Tyler

Its Been Rough

2012-01-24T15:01:00.000-05:00

Tylers behaviors over the past 3 wks have been really bad. He is not hitting ME, but he is screaming at me and calling me names. He IS hitting his therapists, kicking his therapists and having full on meltdowns. EVERY session. EVERY evening. And the issue always starts from the moment when he gets home.

Friday I had a senior therapist in here for an interview for his weekend program. She has a PHD in psychology, evaluates and diagnoses, and develops ABA plans for direct care people. She talked to me about Tyler for about an hour. Then Tyler came home and she observed him for 20 minutes. I have described Tylers behavior in general as very controlling and bossy. And he portrayed that during the 20 minutes through snack time with screaming and name calling towards me too. He almost hit the therapist.

The therapist thinks Tyler is portraying significant signs of ODD (oppositional defiant disorder). She said it's pretty severe (and she didn't even get to see the violence). I asked if it was possible that it's autism causing it. She said yes, and it is seen in some kids, but Tylers case is really bad and distinguished. She thinks he needs help with it NOW and feels he is on the road to severely hurting people in a year or two and if he keeps going he will be sent away to a special school for kids with severe behavioral problems. She said "but I can help" and she thinks she can get the behaviors reduced in 3-4 months.

Anyways. The BCBA is coming over today with the lead therapist to work with Tyler and strategize (his weekday program). They need to re-write his behavioral plan. They warned me that the behaviors are going to get a LOT worse before they get better. They have to "peak". Ugh.

-Tylers Mommy

Are The Pieces Really Missing?

2012-01-19T08:42:00.001-05:00

Even though it has been 3.5 years since his diagnoses, I am still rather clueless about my son. As a mother it is only natural to want to know your child. I have known him 5.5 years yet I feel like I don't truly KNOW him. Sure, I can describe a lot of his character and predict possible outcomes in certain situations. I can tell people some of his likes and dislikes. I can predict what may upset him and what may bring a smile to his face. I know all the places we can go to with success and ones that will be trouble. I know the foods he likes and dislikes. Of course there is the unpredictable. A place I thought was "safe" could suddenly become unsafe....But I don't know what puts him together. I can have all the facts in the world about autism but still not understand how he is put together.

My son is as unique as they come. Every medical issue he has is not text book and autism is no exception. In our little world, outside of therapies and professionals, there are either those who raise their eyebrows when my son and autism are mentioned in the same sentence, or there are those who see a major behavioral problem and judge how we as parents react to it. Either we over react as the stress in that day overcomes our abilities to remain calm and orderly in public or we are to exhausted to do much at all and wait until he's hurting someone or himself or becomes horribly disruptive. I can only recall a handful of times where I have received a public acknowledgement for how well I may have handled a situation. You know. The slight nod and half smile. The passive pat on the shoulder (and I am not one that likes strangers touching me). And the verbal "good job mom". Good job? For what? Do you want to know what I REALLY wanted to do? I wanted to scream right along with him. I wanted to scoop him up in my arms and kiss away his agony. I want to make all the people and items that hurt him in this world disappear.

But the outside world does not know that. He doesn't have a physically obvious disorder. They do not know that he reacts that way because of his disorder. I am not ashamed of my sons disorder. It is a part of who he is. I wish there was a way to automatically zap the public with knowledge. The knowledge to detect a child on the spectrum. The knowledge on how to react/respond to it (even though even as his parent I still don't know how to!). The knowledge to understand he isn't spoiled or badly parented. I want knowledge, empathy, patience and understanding zapped into every human living on this earth.

But that is not how life is. Life is full of questions, misunderstandings, ignorance and pain. But, without all of that, I feel as though love would not exist. It makes my love for my son that much more significant and meaningful. That much more full and true. Our love can not be duplicated by any other being on this earth. My bond with him is beyond any other bond and I am so glad we have each other, because we certainly don't have the world. I feel blessed to be able to experience that.

My son is not a traditional autistic or pdd-nos child or aspergian. The general public knows most about traditional autism, and then after that probably aspergers. I have heard people mostly match him to aspergers. The ones that don't know his history or his layers. But it doesn't fit. He has the proper social interest which makes it so much more confusing. But. He does not learn like an aspergian. He lacks interest in learning any traditional academics. He doesn't know how to read. He can't count well. He doesn't care about it. He doesn't care about sea creatures or planets or dinosaurs. He hates books. Does that make him a traditional child with pdd-nos? NOT AT ALL. His father has pdd-nos and they are COMPLETE opposites. His father stays as far away as he can from socializing, but Tyler CRAVES socialization......in a controlled setting.

He is highly controlling. And most people don't "get" what I mean by that. For brief explanations I describe it as bossy. But that's not it. It is not his intent to rule over other people. It is his intent to make sure his life is orderly without disappointment. He needs his environment to be controlled by him to feel safe and secure. So that outburst he has in public because he didn't get what he wants? It isn't because he is actively "being bad". Outsiders view it as inappropriate behavior. I view it as "how can we calm him down so that he isn't disrupting others" and I can only imagine that Tyler views it as "my world is not under control right now and I don't know what to do". Not actually knowing my son, I can only imagine that it's like seeing your favorite ball in the middle of the road with a car racing down and there is absolutely NOTHING you can do to prevent the destruction. Your heart races, your body either freezes (which, in case you don't know, this is when he shuts down and does not interact with people), or you scream even though the driver can't hear you because you know what could happen and you are frightened and you can do NOTHING to stop it (which is a tantrum or panic attack), and I bet there are some that would run right out in front of that car to save that ball (me, the mom, getting right in the middle of the war). Well we know the ladder ends up in more tragedy then there needed to be. Get in-between my child and whatever is "setting him off" or taking his world out of control, and that's when the train derails. There is no "helping" by the time you see that car coming around the corner.....

He is also an attention whore. He desires both negative and positive attention. In a psychological view, this may be seen as a cry for attention. Mommy and daddy do not give him attention. I can assure you that is far from true. We eat breath and sleep Tyler. No. Again. You have to look deeper. Under his layers. His negative and positive attention seeking ways are another form of control. OK, so on the outside he is seemingly acting out because he didn't get his way (his environment is out of his control), so he is going to get angrier and angrier. He will hit and scream. And we know that paying attention to that fuels it. He could suddenly go silly (yet still non-compliant), just his way of, again, getting more attention....which fuels it. Dig deeper. His attention seeking ways are yet another strategic way for him to control his environment. He prefers all eyes on him whether he's behaving or misbehaving. And when he could be in a great mood and he loses your attention, all bets are off and suddenly we are in that tornado of behaviors that make you want to crawl back into bed.

So I can't even break down his diagnoses to try and make sense of him. Autism is currently an umbrella statement that covers a wide spectrum. There are people that can accurately categorize their childs disorder under the autism spectrum...but still are unable to KNOW their child. I can't even "categorize" Tyler. Which is probably the strongest argument for him being placed in the pdd-nos world. Those that state he resembles aspergers most are those who haven't spent the time with him. I remember Tylers preschool BCBA stating within the first few months that he is likely aspergers. Then when we are leaving the school at the end of the second year, she states pdd-nos best suits him....because there is no rhyme or reason, no concrete decisive MARK that places him in either place. His history shows language and global delay, which is not as common in the aspergers world as is with the pdd-nos world. And this is why he was officially diagnosed with pdd-nos when he was 27 months old. Now his language is beautiful, age appropariate aside from typical autism pragmatic issues. He is caught up globally but does struggle to learn. But not due to the capabilities of his brain. It is due to the qualities of his disorder.

I've come to terms with it. It took me a long time to accept his diagnoses in general. Then I hit the grieving stage of trying to make sense of it all as a step to trying to "fix" it. I HAD to tare apart the spectrum to understand where he lived on it. And from there I felt I could better understand WHO my son is. But I came up empty....... He's on the spectrum and he is who he is. I now know that even if he COULD be placed in a specific spot accurately, we still wouldn't KNOW him....let alone know the autism side of him. So I call it "Tylers autism". Society and professionals can be comfortable with saying my son has pdd-nos, and factually I can say that because if you make a graph and check off symptoms and "qualifications" of pdd-nos and symptoms of aspergers, there would be more checks on the pdd-nos side. But what makes it more true, is that a true child with pdd-nos honestly doesn't "fit" anywhere else on the spectrum anyways. They are a beautiful recipe of the autism disorders. Which is why that CATEGORY exists. But really, my son isn't a category within a disorder. As stated earlier, he is as unique as they come. Our children (and when I refer to "our" children, I am referring to children on the spectrum) are as unique as they come.

Despite knowing this information, we do not know how to approach it in the RIGHT way. Why? Because I don't think there is a right way. I can tell you that living like this is not easy and it is becoming detrimental to his future. After writing that I can see how sad and depressing that sounds. I must assure you that there are so many AMAZING and beautiful things about the spectrum. THERE IS! SERIOUSLY! He says some of the most unique but amazingly true things that one would NEVER have connected. He amazed his doctor yesterday by comparing the bulb that pushes air through the tool that looks at eyes (forgive my lack of medical equipment termonology)...... as breathing. She stood there mouth gaping open and said "never in my 15 years has a child said that, and he is right!". When he was 4 he asked me how an air conditioner worked. He asked me if air was STORED IN A BAG inside the unit. He requested a scientific explanation as to why your ears hurt when traveling down the highway with only one window open. My son is amazing and I will never ever deny that.

But reality is ups and downs....and it is the downers, the tough sides, the rough, endless mountains, that DO overshadow the brilliant and amazing. People can sit here and say "grasp that aspect". "Hold on to that". But lets be real here. Logically, that makes sense. And I would more than love to do that. How much EASIER life would be if we held on to the good. But pain is very strong. Saddness can easily control your life. Balance is hard work. THAT is the truth. And as a mother of a child on the spectrum, balance is what we fight for every day. We can only climb over one mountain at a time.

My son needs to learn how to function in our world. That is fact. It's the painful truth. Because the future is unpredictable as is life. He needs the skills to adapt and cope. This is why we are doing ABA right now. Every request is a struggle and a tantrum and life should not be this way. Of course it would be helpful to know how to do it "right". But, no one knows how to do it "right". Because we don't REALLY know Tyler. So we can only go off of what we know works best and what seems to make the best progress. So stopping the behaviors is what we must do through behavioral therapy. Applied behavioral analysis. He must understand that even though his world is out of order, he needs to learn to adapt and cope because our world requires it. IT IS NOT FAIR. IT IS NOT FAIR TO HIM. We should be able to get inside him and understand. We SHOULD be able to decipher how to teach him the RIGHT way.....the way that makes sense to him and does not cause this physical and mental pain to get through each session. But we can't. Because even though he is my son and I know his likes and dislikes, what makes him happy and what makes him said, I still to not KNOW him.

As he gets older I am able to more fully understand why kids on the spectrum are compared to a puzzle. The "missing pieces". But it isn't how it sounds. My son isn't "missing pieces" in the direct sense. He has all HIS pieces. It's the outside world...his friends, teachers, grandmothers, aunts and uncles, strangers, mom and dad.....that don't SEE the pieces. To US they are missing from our view. We can't see the various shapes and sizes because in our vision they do not exist. Just like our inability to see sound or hear certain decipals. They are still there. It still exists. Just because WE can't see them, doesn't mean they aren't there. We can't help but want to find them. As though they are lost. As though they have vanished from the face of this blue and green earth. But we must rearrange our thinking. We aren't looking for a lost item. We are simply trying to see them.

They are all there.

-Tyler's Mommy

ABA Update

2012-01-17T11:55:00.001-05:00

Tyler is doing really well in ABA therapy. And I have to say it has been a blessing in our home. It's not only helping him, but it is helping me too.

They are here 5 days a week, but it will be cut down to 4. They are here 12 hours a week but it will be cut down to 11 due to company policies changing and them not doing therapies on Fridays and instead have Fridays as make-up days. But the help here in the evenings is so wonderful. I don't have to deal with Tylers behaviors on my own. I have help! In fact the therapists would rather THEY be the one to deal with the behaviors. Hey, fine by me! It just makes our evenings SO less stressful.

Tyler IS making good progress. One of the biggest things that he is progressing in is saying excuse me. Tyler is very very very attention seeking. You can't talk to anyone without him rudely butting in. And I don't mean this on a typical 5yo level. This is to the extreme. So we have been working on "excuse me" since the beginning. He still needs prompts every now and then but it is getting so much better. Once he gets down "excuse me" in general, then we move on to him saying excuse me and waiting. That will be a tough one!

They are also working on him having some independence. Again this has turned into a big success too!! They are teaching him to pull toys out on his own, play with them, and put them away...without having to ask me or needing prompts and suggestions and then fighting with him to put the toy away. They do this by him having his own activity schedule. He can chose what he does. The goal is 5 activities but right now we are up to 2. He chooses them and puts them in his schedule. Then he has to follow it. He has to go in order, he has to do each activity. He has to pull them out, play with them and put them away with NO help or verbal prompts from the therapist. If it is an activity that includes people, the therapists can of course play and do them with him.

So far success has been on and off. The therapist has to point to the schedule and that's all she can do. So he can get frustrated easily. They did wean him into it. They started with a different schedule where they did it both together. Picked out the activities, pulled them out, did them and put them back. So he has graduated from that step.

As a result, Tyler has on SEVERAL occasions outside of therapy, pulled out activities on his own and played with them!!! This is the purpose of the goal! So it's working.

They are also working on getting him to dress himself without prompts, whining and crying. They are working on whining and crying and tantrums in general. He has put on quite a few for them. He didn't have these issues at first. I warned them there would be a honeymoon phase. That he would not exhibit these behaviors for about a month. After a couple weeks I could tell they didn't "believe" me. Then BOOM, about the 5th week, the real Tyler has arrived LOL. I'm glad because they work with him THROUGH the behaviors with the goal of eliminating the majority of them.

So that's about it for now. I am very happy and impressed. It won't be much longer that we'll have someone working with him on weekends too.

-Tylers Mommy

#5 of school year 2011-2012

2012-01-16T11:39:00.000-05:00

Tyler got sick again this past Wednesday. He woke up with a nasty sounding yet infrequent cough. He came home and had ABA therapy where he developed a fever.

By 7pm that evening Tyler felt awful and was sporting a 103 fever. Tylenol did not take it down and finally by about 1am, I added motrin and a shower which brought it down to 102 and he was able to sleep. He continued to be sick Thursday and missed school. Same story Friday.

Friday morning I took him into the doctors during walk hours for a school note. They weighed and measured him. He is 43lbs and 47.75 inches. His BMI has dropped down to underweight. I knew he had lost weight over the past month or so as I had noted that he was starting to look rather skinny. The doctor wants him to go in for a weight check on Wednesday and wrote a note for the school stating he HAS to have 30 minutes for lunch to get in the calories and nutrients he needs (he only gets 15 minutes and never has enough time to finish).

Tyler continued to be sick Saturday but his fever let up. His cough got really nasty and I worried we'd not make it through the weekend. I bought a plug in vaporizer and it helped SO much.

Today there is no school for MLK observance. But Tyler is doing much better. He wakes up super stuffy and junky and has a fit over all the junk in his nose. After about 2 hours he's better. His cough is still present but not nearly as frequent (he was coughing about every minute or less on Saturday and it had a bark to it). Hopefully he keeps going in this direction.

I haven't uploaded Christmas photos yet. I haven't even put them onto my computer. I really need to get on top of that! At this rate it will be summer by the time you get to see them!

-Tylers Mommy

Christmas

2011-12-30T09:24:00.001-05:00

Christmas went very well. Tyler woke up and stated it was Christmas and Enzo's birthday. He was excited to see if Santa had come. He ran down the stairs and was not let down at the site under the tree. He saw the hugely wrapped gift and immediately looked for the name tag...that didn't exist! We distracted him long enough to put one on. He found it and was so excited to see it was for him. Tyler has enjoyed all his new things to an extent. We will see as time goes by as to what items are hits and misses. We have had a nice week off together. We took him to Tin Tin. I think he could have been a year older to really appreciate it but it was action packed and he particularly likes the dog in the movie. Yesterday we helped daddy take his stuff down to his apartment and we did a little touring is Connericuit to see where we might live within a year from now. I do not want to offend anyone but I am not impressed with the state. It's just not for us. The cost of living is higher than MA if you can imagine that. They tax everything and house taxes are through the roof. There was tons of traffic the whole time and it was hugely industrial. We are hoping that daddy will be able to transfer when it comes time to move. The company has a branch in the northern part of CT which would allow us to stay in MA and it has a branch in SC which would be optimal. Tyler has had an awful cough. He started antibiotics and prednisone. Yesterday he vomited 3 times from the cough. He was up a lot last night but this morning he hasn't coughed much yet. He is still in bed but is waking. Several people over the holiday has commented that they do already see a positive change in Tyler since starting ABA. Today we hope to get the tree down and out house back in shape. The holidays really did rare it apart. Tyler's poor therapists don't know where to do the therapy lol. It will still take another week to get it all back to normal. Daddy officially leaves for his job on Subday. With family coinciding Tyler is finally grasping what is happening and expresses how he is going to miss his daddy. -Tyler's Mommy

Mommy Went Down

2011-12-19T19:28:00.003-05:00

Mommy was admitted to the hospital this past Tuesday. I got out on Friday. We are unsure of what happened but I had a bad episode Tuesday night while in the hospital. My o2 dropped down to 78 and they had to put me on oxygen.

Anyways, I am home now and finally today I started feeling much better. Tyler took my absense fine. Didn't even really notice I was gone. I have been having to do a lot of catch up. You really do miss a lot in a week. The house is a complete disaster area. I got a little done today but I can't do TO much or I get really exhausted. We should be back in order by mid week.

Tyler received elf on a shelf. What is absolutely amazing is that he TOTALLY gets it. He understood the story and the rules and LOVES it. :)

So far ABA is going well. They haven't started "hard core" therapy quite yet but they will start to this week. Tyler has built a good relationship with the therapists. They are weaning him into stuff and doing a great job.

-Tylers Mommy

On The Mend

2011-12-10T23:27:00.001-05:00

I haven't updated sooner because Tyler has shared his lovely virus.

I did end up taking him to the doctor on Thursday. At the time he had no signs of secondary infections. His fevers stopped Friday and he was back to school on Monday. So he missed 5 days there. I got a lovely letter from the school warning me that he is 11 absences away from the districts allowance and he may not be allowed to move up a grade if he goes over those 11 absences. I think it was an automatic letter though.

He continues to have a cough and some congestion but it is greatly improved. He continued to be short winded and more tired throughout last week but he is slowly bouncing back. I am starting to suspect exercise induced asthma in him. Over the past couple months I have noticed him tiring MUCH faster than his peers when playing and saying things like "I have to get my breath back". Sometimes he will suddenly just plot down where he is to " get his breath back". There is limited coughing from him when he does this and I do not hear wheezing, but I do suspect asthma.

Another cause could be the whole heart thing but I'm trying not to allow myself to think of that. His doctor called me yesterday to go over the cardiology appointment. I did briefly mention his inability to keep up with peers but he didn't seem over worried. He just said we should probably bring it up with the asthma doctor. In the mean time I am going to switch him to maintenance asthma meds daily now instead of only when sick to see if that helps, and maybe give him a couple puffs of albuteral when he's going to go play.

He gave mommy his virus and I have been fighting it for about a week. I didn't get it NEARLY as bad as he did. I had a soar throat and was really run down for a day. The rest of the time I've been congested and coughing and not feeling wonderful for the week. No fever and not entirely bedridden.

This week Tyler started in home ABA. I will write more about that later. Tomorrow we have our annual extended family Christmas party. I worry about Tylers coping skills. He absolutely adores his cousins so I think that will help. But the last two birthday parties we have gone to he has been completely withdrawn and wouldn't leave my side or talk to anyone. I'm hoping that since he loves his second cousins he will come out of his shell and enjoy himself. Word has it that Santa should be there tomorrow!!! How exciting!!!

Well that's all I'm going to write tonight. I am getting ready for bed myself. So much to do tomorrow morning before we head out on our 1.5 hour drive to the party.

-Tylers Mommy

Day 5

2011-12-01T11:40:00.002-05:00

Tyler continues to be sick. He is a little brighter today and doesn't seem as miserable, but the fevers continue so the doctor wants to see him.

-Tylers mommy

Day 4

2011-11-30T00:14:00.003-05:00

It is slightly past midnight and technically Wednesday. We are entering day 4 with the flu. His fever had gone down last night and I thought it was gone for good however by mid day was back up to between 101 and 102. He continues to be very congested and complains of head and ear pain. He wants me to take him to the doctor as he says he thinks that his ears are infected. But I'd rather just see how it goes tomorrow.

-Tyler's Mommy

#4 of school year 2011 - 2012

2011-11-28T22:04:00.004-05:00

First I'll share what happened at the cardiologist.

As soon as we got there they ran a second EKG which showed the same as the first. The assistant did an exam on Ty and asked us some questions. She then sent him across the hall to do a very thorough echo. It took 45 minutes and the technician kept typing "check pause on EKG" so there I am freaking that his heart is pausing.

Long story short the echo showed a beautiful heart working properly!!! The cardiologist suspects 2 reasons for his abnormal EKG. First is that he's thin which makes the EKG more sensitive. Second is his ADHD meds. She explained that the A.M. symptoms make sense due to the electrical impulses of the heart. She doesn't feel it is dangerous and felt that we could give it more time to see if his body adjusts. I spoke with his doctor and he agrees. So far Tyler has not had any further episodes.

So on Saturday evening I noticed Tyler getting a little congested. His friends a 3yo and his 5yo sister just got over a bug. I thought for sure he was gonna get it. And he did. Sunday he woke up with a low fever and snotty. By noon he was sporting a 103 fever, headache, chills, body aches, ear pain, coughing, sneezing, congestion and nausea.....the whole 9 yards. The poor kid was on the couch till bed time. He woke up this morning sicker and of course stayed home from school. Today he had rather significant head and ear pain despite both Tylenol and Motrin. Also the fever reducers were only working for 2-3 hours at a time. I then called his doctor and got permission to double his triaminic dose. He got that at about 6pm and seems to have turned the corner.

His head is feeling better (not entirely but a lot) and his fever is hardly even registering without fever reducers. He's talking and much more perky.

If he continues on this path and does not get any secondary infections, this will be the first time he has gotten the flu (or any bug) and fought it without the aid of prednisone or antibiotics......and fought it in a normal life span. It will be the first time that he will have fought a bug like a NORMAL healthy child is suppose to!!!!!!

Tomorrow I meet with the broker for the autism waiver program. Her job is to write up a "plan". After she submits it, it gets approved and then we can finally start services. As for the ABA.....we are STILL waiting on therapists. This has been going on since SEPTEMBER. I'm ready to seek a different clinic.

-Tyler's Mommy

Abnormal EKG

2011-11-18T10:01:00.002-05:00

Yesterday morning Tyler had another episode. It was extremely mild in comparison. No heart racing. "Just" some mild pain that lasted only a couple minutes. So I called the Dr.

The nurse stated (and I kid you not) "maybe he slept on it wrong". Really??? Seriously??? SLEEP ON YOUR HEART WRONG???? So I had to take her through the history. It was then that she opened his file. The EKG results had not come in. I asked her to please press for it and please tell the Dr. he had pain this morning.

6pm last night the Dr. calls and says Tylers EKG showed a normal heart rhythm however it showed thickening of the left side.

Now...people can tell me left and right not to consult Dr. Google. But. I feel like as a mom, I should be doing as much research as I can. He is MY child and I have to make sure he is taken care of. And what I found was very. very. scary. But I found a lot that isn't scary as well. I read things from heart failure, cardiac arrest to asthma causes and it being normal in kids in general. I ALSO read that EKG's are not considered to be an accurate measure of LVH (left ventricular hypertrophy). It said that mostly, it gives false negatives...BUT....it can also give false positives. So I am going to hold onto that.

So the Dr. said that the cardiologist wants to see Tyler and run some tests. This morning I made the phone call for the appointment. I was worried we'd have to wait until after Thanksgiving. Nope. They got him in for this coming Tuesday morning at 10am. They said it would be a 2 hour appointment and that he HAS to have 2 adults with him, so his uncle is going to come. They asked us to bring asthma medications in if he has them. So I assume they'll have him do some kind of stress tests among others. The Dr. did tell me that the cardiologist wanted to do an ultrasound (echo) of his heart.

So, please keep Tyler in your thoughts and prayers. Pray that the EKG is wrong and that his symptoms are benign. And pray that if there IS something wrong, please pray that it is treatable and that my boy stays strong and healthy and gets through this.

Thank you for all your support. He has been through SO MUCH it is unbelievable. He doesn't deserve all this. He has no clue the severity of what this is all about. I figure we'll cross that bridge with him if we have to, but right now we don't have to.

-Tylers Mommy

Still Waiting

2011-11-14T20:52:00.002-05:00

First off, I was wrong about Ty getting an echo. It was actually an EKG. They said we'd get the results in a week but I highly doubt anything will show amiss. He hasn't had any other episodes since then.

So far his new med regimen is going pretty well. He does say he's tired during the day. I may try him without clonidine in the morning to see how he does. But his tics are starting to get real bad. The doctor says the tics won't harm him as long as it doesn't bother him since he already has them anyways. I kind of want to get a second opinion on this.

I heard from the ABA place last Thursday. He basically said that they were ready to submit their plan to the insurance company for 12 hours a week of therapy. So we need 1) the official approval and 2) to find therapists that can do it. This has been a SUPER long process. Tyler is in dire need of this therapy.....more so socially than anything else.

Tyler has been hugely sensory seeking. Slamming his body into walls, hitting himself and running his body into people, jumping on the trampoline, hanging upside down etc. I feel like the medication is locking it up and it's overflowing so he's kinda slamming it out of his body.

Tyler got approved for our states autism waiver program. Only 80 kids are chosen for the program. And then they had to evaluate him to see if he needed it enough. He was approved and will be able to get a LOT of different things including respite care, someone to help me clean the house once a week, horse back riding therapy, and equipment for the home. Things we are hoping to get are a swing, a better trampoline, a crash mat, 2 weighted blankets, things to sit in and spin and rock in, a bean bag chair and an adaptive stroller for his size.

Anyways. This Friday I have a parent-teacher conference. Very exciting. I did hear from the teachers last week via email. They say he's starting to learn now that he has the medications. He is able to focus better and control his body better. His class has 3 children with autism in it and they have their own aid. But the aid spends most her time with Tyler. I worry if that's fair to the other 2 children.

Anyways. Hopefully getting the ABA therapist in here won't take TO much longer.

-Tylers Mommy

A Lot Going On

2011-11-07T21:21:00.003-05:00

Everything is chaos. Just a lot going on at once.

Today the ABA place called and spoke to me about Tylers goals over the phone. We are now in month #3 that we have been waiting to get someone in here. He will be getting 12 hours a week (which is all we have available for time since they don't do weekends). But they have to find the therapists now to do it.

Tyler had a very scary episode on Sunday morning. He woke up complaining his heart hurt and beat to fast. His heart rate was high and a few minutes later he collapsed going up the stairs. He then tried to drink a pediasure and vomited. It took 2 hours for his heart rate to come down. Yes I did call the oncall doctor. They said to massage his artery in his neck and if his heart rate went over 140 to head to the hospital. Thankfully it stayed just under that. After the episode he was FINE and has been since.

Today he went in to follow up on the episode and they are gonna do an echo cardiogram on his heart on Thursday to be safe. One of his medications has a very rare but serious side affect that can affect the heart so they wanna make sure it all checks out. But it is highly unlikely that anything is wrong and that it was just some fluke episode, or dehydration or a panic attack.

Tylers negative behaviors are on the rise again. We feel this is the result of the medication. We are going to give it more time this time around though to see if his body adjusts. His autism behaviors have been VERY prominent and it is making socializing with peers VERY difficult. The ABA therapy can't come soon enough.

-Tylers Mommy

The Stares and Opinions of Others and OT Update

2011-11-03T23:37:00.004-04:00

Peoples stares and opinions and comments and judgements are really starting to get to me.

I have business cards that I had made a few months ago for circumstances like these. But even handing them to someone makes my stomach flip and it feels awful that I feel it necessary. I am super shy and definitely not confrontational. It says "Autism is my superpower" and then it says hi, my son has autism spectrum disorder. He may talk, walk and socialize differently. He may behave inappropriately and talk loud. Thank you for your patience and understanding...

I handed my first one out this week...

We were at Friendlys. There were 3 other parties at the restaurant. The staff and owner know Tyler. They greet him by name and treat him GREAT. Ty and I were having lunch together. We were having a GREAT time together and it was actually one of those moments where you feel such a great connection with your child.

Tyler is a loud, always moving, mostly happy child. He was laughing and talking loud, as voice modulation is not a strong point for ASD kiddos. He was behaving, he was just loud silly and happy. Every so often, he'd turn around to look at the two women behind him. He does this ALL the time. Sometimes I don't even notice it anymore. But of course I tell him he needs to turn around and eat his food. One time he turned around and did his little Tyler growl and laughs. He was trying to make them laugh. But it scared the women with her back to him. The other women looked at me, scowled at me and said "oh my God". I told Tyler he needs to turn around and mind his own business.

So we get his ice cream and I'm trying to get him to eat gummy bears. I tell him to bite their heads off (hehe). And he thinks its the most hilarious thing. So we take turns biting heads off of the gummy bears. The women facing us keeps giving me dirty looks. Then Tyler turns around and very sweetly says " hi!". The women with her back to him turns around and sternly says "turn around and sit down!". OOOoooohhhhhh noooooooooooooooo. I was so mad. But I am a CHICKEN. What do I do? I finish up eating, pay, stand up, tell Tyler to give them the autism card and book it out of there.

Then my mom and brother visit. Tyler is in shut down mode. He can not tolerate people talking to him or people in his home. He is laying on me with the blanket over him. Gets upset if someone tries to interact with him. After awhile, seeing that they aren't leaving, he starts acting out. Crying squealing, kicking me. He gets sent to his room twice for 10 minutes each as he started to get violent, This went on for a good 2 hours....it is so much easier for people to think that a fully verbal child that can walk and talk and count and play.....as being disabled. So family members are blaming parenting. I should put him in his room for half the day. I don't punish him enough. But....he has no idea that he is doing something wrong. He's just trying to cope. He's in a situation he can't handle. And people just can't understand that.

One of Tylers "things" is that he likes to rub and pull on peoples clothes. We don't know why but it's probably sensory related and a coping mechanism. It IS really really annoying cause he pulls your shirt way out and sometimes he lifts your shirt up from the bottom. It drives my brother nuts. Today we were at OT and the receptionist was in the waiting room. When the kids came out Tyler was super duper hyper like always. She hates how loud and hyper he is and often times it's not just me trying to slow him down, she pitches in, often raises her voice at him. Well today I didn't see what happened because the therapist was talking to me, but next thing I know she's YELLING at me " he just tried to pull my skirt down!". She was VERY upset. She acted like he was being a pervert and trying to embarrass her and see her privates.

Tyler doesn't even know that girls and boys have different private parts yet! I asked how far he pulled it and she showed me like 2 inches LOL. I understand how embossed she'd likely be if that happened in front of everyone....but it didn't. And he did not understand. I told him he can't be touching and pulling on other peoples clothes. She looked at the OT like " that's ALL she's gonna do????" And the OT bent over and told Tyler to go apologize. He did but he has NO IDEA what for. He has NO CLUE what he did wrong. She was so angry and the WHOLE waiting room, who does not know Tyler, sees a very verbal, functional, hyper and likely misbehaving kid...they likely think he's just rotten and perverted or something!!!! I was near tears....by how public it was, by the fact that he did that to someone,by the fact that he has NO IDEA that its wrong....but mostly because SOMEONE ELSE thinks he's a horrible rotten kid. But it's not his fault :(

We are entering into a new realm here. The behaviors are no longer socially acceptable unlike when he was a toddler and viewed as cute. And it's awful :(.

OT Update:

Tylers been in group OT or a little while now. He receives both ST and OT from the same clinic. He was in one on one OT but the schedules changed and until they have a slot again for him, hes been in group OT. Today the OT gave us a little update on how they are doing.

Tyler is the oldest, but the other kids are 4 so he's not TO much older. Tyler has the " best" cutting skills though he still needs some work. But the OT said that Tyler definitely has some sensory issues going on. She said she can't technically work on it cause it's not covered by insurance. This may be wrong though so I will have to look into it. But she said that is a huge problem for him as well as his ability to attend to task. "What do you mean?" I asked....though I think I kinda know. She said that he needs repeated prompts over and over and over to do the activities. Each step has to be stated to him over and over. She said he's super distracted by everything and everyone around him. Boy do I know it! LOL. And I think this problem here is going to be the major reason why when he hits 1st grade, he will likely need a continued 1:1 or 1:2 aid in class.

Guess that's all for tonight. My husband has abandoned me to enter into dream land as I take the time to write this post. And now the font is all messed up and I doubt I can fix it. Ah well...

-Tylers Mommy

Saturday, Sunday, Monday, Today, Focalin and Wednesday

2011-10-25T14:55:00.006-04:00

Saturday:

On Saturday we celebrated Tylers uncles birthday. His actual birthday was Friday. He officially has ONE year left in his 20's hehehehe. Anyways, my brother Tylers uncle, lives with us. My mom came up with my other brother to take Uncle T. out for dinner. Tyler had a very very OFF day. He was not thrilled about the company. He hid under a blanket in my lap whining for quite awhile. On and off he'd do some tantrumming and whining and lashing out. He had a few timeouts in his room. We tried to change his mood by taking him to the park but it didn't work to well at first.

He still didn't want to leave my side or socialize. It took a good half hour for him to lighten up and play. FINALLY, 2 hours later his mood was turning around. He couldn't connect with any of the kids, but he DID try. We then left and went pumpkin picking. We took a hay ride down to the pumpkin patch. Tyler LOVED this activity. He picked out two small pumpkins and I picked out a medium sized one. That boy LOVES his pumpkins. He slept with his two that night!!!

We then went out to dinner at Outback Steakhouse. We ended up being there for 2 hours as service was SUPER slow. Ugh. But it was still a good meal. Tyler was still out of it but thankfully not whiney or anything.

Sunday:

We carved our pumpkins :). Ty actually tried to get some of the seeds and inners out. He got about 4 tablespoons out before he requested that mommy finish it hehe. But that's OK. He loved watching the process and saving the seeds for me to bake. I carved a goofy scary face into the larger of Tylers two pumpkins and daddy carved a ghost into my pumpkin. I baked the seeds, seasoning them with garlic and salt. Tyler had waited ALL DAY for those seeds. He requested them for breakfast and lunch. After dinner I gave him a few, knowing he wouldn't like them. He so badly wanted to like them. He tried on and made a yucky face. He tried it again and his face looked like he was going to cry. I said "you don't like them?". He made a sad face and shook his head. I said "It's OK Tyler, mommy will eat them. You don't have to like them". He talked about his pumpkins ALL day.

Monday:

Tyler requested more pumpkin seeds but I reminded him that he didn't like them. He said "oh yeah". He had gymnastics. He went without focalin yesterday cause I forgot to give it to him. He was totally in lalaland in gymnastics. He did not pay attention what soever and didn't know what he was suppose to do. He still had a good time though.

Today:

Tyler had ST today with the clinics ABA. Last week started out rough but after about 10 minutes and some good ABA techniques, he really did well. Today again he did quite well. I'm thinking it is due to the focalin.

Wednesday:

Is FINALLY Tylers ABA assessment. We have waited since September 1st for this to go through. It took a month for insurance approval and another month due to paperwork issues with the clinic doing the assessment. It is suppose to be about 4 hours long. I hope all goes well!!!

Focalin :

So far Tyler is doing OK on it. In 2 weeks he has had 2 bad days at home and I'm pretty sure they were due to the med. The rest has been OK though. I am playing round with dosage to see if that's the problem. Also we aren't really seeing the eye tic. I am a little but its subtle enough that I can't distinguish it between a medication side affect or his usual eye blinking tic.

-Tylers Mommy

Lice!

2011-10-18T08:39:00.002-04:00

My poor baby had a case of lice. I noticed him starting to itch on Thursday real bad. On Friday we were with friends and I joked he could have lice. By Saturday I thought, oh no, he really could have lice. So I checked. And he did....

He was SO freaked out. I tried doing the combing thing and he hated it. He felt that his actual hair was bugs and they were "snatching" him. We ended up having to shave his head :(. This was 100% Tyler decision. We did make him try the comb, and we showed him pictures of little boys with no hair. And he wanted to have no hair. It had to have been pretty bad because he had wanted to grow his hair out like a boy in his class. It was getting a little long too (for him). The poor kid :(.

We then went to the mall to buy him some hats so that he could cover his head and keep his dignity. We then headed out grocery shopping. But Tyler lost his new hat at the grocery store. We looked and looked and I left my phone number. Not even an hour later we got the call that it had been found! Yay!!!

Tyler went to school on Monday and I called the school to let them know about the lice. I asked that he be allowed to wear his hat until his hair started to grow back in and they said yes, they understand. However when he got home, he told me they did not allow him to wear his hat. So I wrote yet another note today stating that he had permission from the office to wear his hat. I hope they let him.

Here is a picture of my little man waiting for the bus with his new do and new hat:

I couldn't get a smile out of him, but hats totally suit him. He has a hat face :)

-Tylers Mommy

Focalin

2011-10-17T14:39:00.002-04:00

Well, I have nothing to report on last weeks ST session. Why? Because I COMPLETELY FORGOT that we changed our schedule to meet on Tuesdays instead!!! So, I ended up missing the appointment and they slapped me with a $50 no-show fee. I hope they can understand that I have never missed an appointment and never been late. Typically, however, the therapists end up taking Tyler in 10 minutes late every session. Ugh! The receptionist said she'd try and work on it. So, tomorrow is the appointment. We'll see!!!

Tyler started on Focalin last week. As it stands we are seeing no improvements except for maybe a little bit of rebound. My bet is that they need to increase the dose so I'm waiting for a call back for the go-ahead to do it.

On a positive note, he did get several great notes home from school in a row! Heres to hoping todays another one!

-Tylers Mommy

Open House

2011-10-12T21:11:00.002-04:00

What a big week....

Monday was a holiday so we were home with Tyler. He had gymnastics. He is doing REALLY WELL in gymnastics and he loves it. He lacks most of the upper body strength that the other kids have which is preventing him from doing a LOT of the stuff. If he can get some upper body strength he could actually do well in gymnastics!

Tuesday he had school and got ALL 4's!!!!!!!!!! Totally awesome! On Tuesday I got a call that his ABA assessment had to be postponed. I was bummed, but it ended up being a good thing because Wednesday (today) was his schools open house!!

Tyler came home today and handed me the invitation he made me for open house tonight. It was so cute! It was also the schools 50th anniversary so they did a little celebration. Tyler showed me all the work he has been doing. He was SO EXCITED.

Like....TO excited. It was hard for him to control himself. So much so that he COULDN'T. Ugh. It was nerve wracking for me, but he was SO HAPPY so it was all worth it.

Tyler got ALL 4's again today!!!

Tomorrow he has group OT and ST. Cross fingers for another great ST session like last week!!

And Friday he has swim lessons.

-Tylers Mommy

Little Victories....

2011-10-06T20:29:00.002-04:00

....enormously proud.

After 6 weeks of absolutely NO gains, NO progress, 100% non-compliance, angry violent behavior in speech therapy...

Today went AWESOME!!!

He walked in kicking the wall. He stated he did not want to go. That he hated it. He got in there. Stated he didn't want to do anything. ST opened up the two games and showed it to him and from there it just took off!!! We got 45 minutes STRAIGHT of 100% compliance. It was just wonderful!

Today she worked on pattern recognition with Tyler for which he did pretty darn well. I am such a proud and happy mommy :)

He did NOT have a good day at school so I thought we were doomed for ST too. But nope, this boy shocked us all.

-Tylers Mommy

Where to go from here?

2011-10-06T09:47:00.002-04:00

First off, I want to share that Tyler made it to school today :). He had NO fever this morning and only a mildly stuffy/runny nose. Always a good thing!!

Anyways. Tyler continues to not do very well at school. It could be worse, but it certainly could be better. He is currently averaging 20-25% negative behaviors. This change occurred when being taken off of Ritalin, however we are unsure if it also is because the honeymoon period is over. Based upon the notes coming home, Tyler is being 100% Tyler. I am getting the same comments day in and day out. He is being non-compliant, argues, won't do the work, does not follow directions, doesn't pay attention, needs redirection often, needs lots of prompts.

I have been struggling with understanding if this is typical kindergarten behavior....but I think deep down I know it's not. So then I sit here and wonder - how bad is it REALLY? I mean, wouldn't they decide to give me a phone call if things continue this way to meet and come up with a new plan? I asked that question 2 weeks ago. At that time the behavior was at 17%. I was told to give it a few more weeks.

At home there are some good and bad changes since going of rialin. The good: 75% less blinking motor tic. 50% less general sour/unhappy mood. 20% less aggressive/violent moods yet with a 50% increase in verbal and physical attitude such as talking back. However in speech therapy, the aggression and violence continues.

At home, since coming off the medications, he has returned to his normal, silly, hyper self. The house is not quiet at all, he talks like he's on speed, he doesn't make a lot of sense, he is hyper, he doesn't know what to with himself, has no interest in anything at all, is disruptive and physically has little control of his body.

It makes life real tough. We describe our home like a circus. Nerves are always on edge because there is never any calm or quiet (and I mean NEVER). My sanity has returned since I get plenty of time while he's in school, but for my husband who also is on the spectrum and has to spend all day in busy, loud, social-filled classrooms and then come home to an off the wall child, it's just to much for him, as well as my brother who he himself has his own social issues and works all day and desires a quieter/calmer evening. This isn't a kid thing, I assure you. This is definitely an ADHD/ASD thing.

So, Tylers prescribing doctor feels that a stimulant is what Tyler really needs. I have to say that I fully agree on this. He did say we could try straterra however that is not a stimulant and the dr has very little hope that it would do anything. So right now we just don't know what to do. Tyler NEEDS to be medicated. He is suffering as well are we. He could do SO MUCH BETTER in school and of course at home.

We DID get insurance approval for an assessment for in-home ABA. I got a call a couple days ago and was told that we'd likely get that assessment next week. I have a few worries with this as Tyler is typically sweet as cake around new people. SOMETIMES he is evasive....he ignores them and/or gives them major attitude. It would take several hours/weeks for this person to get a REAL perspective of Tyler. But...hopefully they are use to that.

-Tylers Mommy

# 3 of school year 2011

2011-10-05T16:34:00.001-04:00

Ty came off the bus stuffy, "exhausted" and with a 100 degree temp.

Guess we'll see where this takes us...

Tonight is the teddy bear parade at his school. He is acting OK and really wants to go so I will take him.

-Tylers Mommy

Getting Better?

2011-09-28T12:49:00.001-04:00

Yesterday around dinner time Tyler started spiking a 101 fever. That, however, vanished after sleeping for a couple hours. He was up 4 times coughing last night, but a quick couple puffs of albuteral and he was doing much better. His last fit was at 6am where he was coughing pretty bad. He took some puffs and was better within minutes. He woke up for the day an hour later with hardly any coughing. He requested to go to school so off he went. It is now almost 1pm and I have not received any phone calls so it sounds like he's doing OK :).

On Monday he had a speech therapy session with the clinics ABA therapist. She ended up only being able to stay for half the time. They first played a game with him and he only showed little issues. As soon as she stepped out and the gears turned to "work" he started acting up. The ST ran out and tried to grab the ABA therapist but she could not stay. She told me she'd come up with some strategies but we (the ST and I) feel like she needs to see all of the issues so we had to set up another time for her to witness it again. This will happen on Monday again.

-Tylers Mommy

#2 School year 2011 - 2012

2011-09-27T11:04:00.002-04:00

Tyler started getting a cold on Sunday. He went to school just fine yesterday. He also went to the Big E last night (a huge fair). But I think the Big E did him in. He woke up at 3am not feeling well at all and he's home from school today.

So this marks his first missed day. Not to bad! He made it through 3 weeks of school before being to sick to miss it :). That's pretty good...

So hes fever free but has a soar throat and a persistent cough with some wheezing. He says his body hurts a little too. Hopefully he'll be back to school tomorrow.

It is unfortunate that he missed today though, as today is school picture day. There is a make up day in November, but he won't get a class picture :(. That's what saddens me the most.

-Tylers Mommy

He Needs Help

2011-09-23T09:50:00.002-04:00

Another speech session yesterday, another aggressive day.

I met with Tylers autism consultant and classroom teacher yesterday. They state that he is doing really well and "keeping it together" at school. They said that home is probably "safe" for him and that I am probably a "safe person" for him so he can just let it all out. That may be true, but there is something wrong and I can't bare to watch it.

Yesterday at speech therapy he threw a chair out of the room and hit the therapist. The therapist states she is NOT afraid of him but if he were older she would be. He is refusing to talk most of the time, and is having physical outbursts anywhere from stomping his feet, or as I said, throwing a chair. Thank goodness he is not hurting himself but SOMETHING is not right.

Today I am meeting with the ABA therapist at the speech center to discuss whats been going on and come up with some strategies to help him. I also called a child psychologist, one who works with the doctor that is prescribing his meds. So hopefully we can get in to see him some time next week. He also has an appointment with his social worker next week.

Please keep Tyler in your thoughts. My Tyler is gone. Something else has taken over him and I am so fearful for his psychiatric health. I want my child to be HAPPY.

-Tylers Mommy

A Good Day

2011-09-20T23:03:00.002-04:00

Today went well :) I am so happy to be able to write that.

The morning started out with his usual protest of going to school. I explained to him that children stay home from school when they are sick. They stay in bed and rest. Tyler states he is not sick. I said, well, you can still chose to stay home, but you have to stay in bed and rest. "No toys?". Nope. "I want to go to school". Teehee.

No breakdown in the morning.

Today Tyler started on his new doses of meds. He is now on slow release ritalin 10mg and 1/2 tab guanfacine 3x/day. The school nurse called me and told me that his day was "FANTASTIC". Except one thing. He was blinking....a LOT. I have a call into the doctor. One of two things is likely to happen. 1) They will add a medication to stop the tic or 2) They will try a different medication. If they try a different medication I hope it works just as well because the positives seem to be turning out to be great!

When he got home, he happily walked down our street from the bus. Usually he's pouting! He went inside and showed me his hand writing without tears project, the letter E. It was so cute! I praised him to high heavens, as I want to positively reinforce his table top work since he HATES it.

He got to spend some quality time with daddy playing with play doh. He LOVES this time with his daddy. He ate dinner. I got him to eat FOUR green beans! I have decided that we can no longer follow Tylers lead. I give him a little of the foods he likes and a small amount of the foods he doesn't like. I tell him he can have more of the food he likes after he eats x amount of the food he doesn't like. So today that meant he got to eat two chicken nuggets right away. He got one more for eating two green beans. And then two more for eating two more green beans and two bites of rice. Hey, that's progress!

We changed his bed time to 7pm (instead of 7:30). I will admit, this is mostly for my sanity. But also, since the time change, he is awake before me which is what he needs to transition into the day. He needs a good 30+ minutes to wake up and chill in his bed. If I have to wake him up, I have a VERY crabby whiney tantruming child. So this has been going well too :).

Bed time tonight was rather smooth. He asked if he had school tomorrow. I said yes. He pouted but I quickly changed the subject.

Lets hope for another fantastic day tomorrow!

-Tylers Mommy

Autism Mornings

2011-09-19T08:34:00.002-04:00

I don't know what's harder on me as mother. Weekends with an ASD (autism spectrum disorder) child or school mornings. This past weekend was LONG. Tyler had some behavioral problems yesterday. He ended up spending a great deal of time in time out. Saturday was tough, but not quite as bad. It's such a haze that I can't remember much specifics of Saturday but I do remember in involved trying to help someone out but Tyler making it tough because the attention wasn't on him so he was acting out.

So all weekend I'm excited for the school week. It means a quiet house, uninterrupted showers, a quiet breakfast and lunch, and the ability to clean the house very efficiently and effectively while playing music if I so chose (Tyler doesn't like it when we play music) with the bonus of not having my child whine at me for EVERYTHING. OK there is another bonus. The husband is also at school! Not that I don't want him around. It IS nice to have him around when Ty is not here. We get that on some Fridays.

So, I do look forward to the school week. Except for one thing. It hurts my heart when my kid goes off to school crying and begging not to go because he doesn't like it. It makes me feel like I'm doing something horrible to him.

Most kindergartens are excited to go to school. AT LEAST for the first few weeks. My kid? No, he's already protesting. In fact, he started last week. On his 6th day of school. "I don't like doing work mommy". "I don't want to go to school!!!!!!!!".

Right now, they are calm protests. But we've seen this cycle before. It won't be long until the total freakouts begin.

We had a little one this morning over his jacket. The school does not allow you to wear hoods in the school. That means, you can't put your hood on your head. Tyler thinks it means any jacket with a hood is not allowed. He totally freaked and begged for something different. I didn't spend money on a scooby doo light jacket for it to just hang in my house! I made him wear it and assured him it would be OK.

He cried at the bus stop. He cried getting on the bus. I promised him it was OK. But I still felt so bad for him. He was really scared to go to school. I ached as I watched the bus pull away, his backpack in his lap and his head bent over into the backpack, clearly scared and upset. I called the school and asked the BCBA to please explain to Tyler that it is OK for him to wear the jacket. So she said she would. I hope he is OK.

And thats my cue. I've finished typing this up, I've finished my breakfast. The house needs a LOT of attention after a very busy and chaotic weekend.

-Tylers Mommy

2011-09-15T21:32:00.002-04:00

Today Tyler had a complete full on tantrum in therapy. It took 25 minutes and 2 therapists to get him to calm down. He looks so sweet no one would guess that he is starting to get violent. He folded a table in half, tried to throw a chair, attacked the wall, hit and kicked the therapists and head butted and kicked me. On the mommy side, as you can imagine, this is heart wrenching. But I won't give up hope that we can get this to become a thing of the past.

The speech therapist has a hard time getting Tyler to do things. He states " I don't like work". He said this to me this morning before school. He doesn't want to go to school because he doesn't like work. School is NOT going to be a fun journey. The speech therapist has him do table top work. Again, he hates table top "work". He always has.

Today I met with his psychologist and she is going to send in the diagnosing letter for him to start ABA. I hope by this time next month he'll be in ABA therapy. The clinic he goes to for therapy just hired an ABA therapist. The ST wondered if we could get her in a few times. But her schedule does not work with mine. We can bring Tylers eventual therapist in though. Thank goodness!!!

-Tylers Mommy

Star Of The Day

2011-09-13T09:33:00.002-04:00

Tyler woke up fever free :). In fact when I checked on him around midnight last night, he felt cool as a cucumber. This morning he said he was feeling a little better. He is getting the typical cold runny nose and he's still sneezing and stuffy. But hey, that's fine with me!

Off to school Tyler went. And I am so very glad that he made it to school today because he is STAR OF THE DAY! This means that he is the teachers helper and the line leader. It also means he gets to do show and tell today. The item he chose? Well of course it would be bear bear. It was so funny. He was going through his stuff yesterday to chose an item. A key. His cell phone. Hmm what could he bring? We were heading out the door and he wanted to bring bear bear with him. I reminded him that bear bear gets lost whenever he comes with us. Then it hit him. Mommy I can bring bear bear tomorrow! So bear bear was tucked safely into his backpack for show and tell today :). I REALLY hope it comes back home!

-Tylers Mommy

#1 of School year 2011-2012

2011-09-12T20:34:00.003-04:00

Today marks illness number one for Tyler this school year.

I sent him to school.

Technically I shouldn't have. But it was his fourth day and he REALLY wanted to go. He was sporting a fever of 100.2. I sent him and then went into the school after and talked to the nurse. She said it was OK to send him despite them having a 100 degree rule.

He came home with the same fever. He's also sneezing, coughing and stuffy. But he did not want to miss his first gymnastics class. He loved it! He had SO much fun! How do I know? His stimmometer!!!! Tyler has this "happy stim" he does. He jumps up and down, flaps his arms and does this tip toe dance thing. He did it almost non stop. He did great at gymnastics :).

Tonight his temp is doing in the 99's. Hopefully it stays down like that because tomorrow Tyler is Star of the Day at school! This means he gets to be line leader, teacher helper AND gets to do show and tell. Naturally he is going to bring bear bear. I really hope he is well enough to go.

I have a call into the immunologists office to see about starting him on his daily antibiotics. By 4:45 I had no received a call so I called them. I was told the doctor was just now making the calls. Apparently they called at 4:53 but I missed it and then again at 5:10. The ringer on my phone gets turned off all the time due to where the mute button is. It is rather frustrating. The office closes at 5 so I couldn't call them back. Their message said I should call back tomorrow morning.

And so it begins.

-Tylers Mommy

In Darkness

2011-09-11T15:41:00.003-04:00

I am going to make this short.

Things have been bad around here.

Bad with Tyler.

And I am slipping into a bad depression.

Medications are not helping Tyler at this point. There are more negative affects than positive.

He was removed from class Friday. I don't know why yet.

Every day life has been full of crying, screaming and tears from him. Daddy and I can not do anything "right" for him. He is getting worse. I feel desperate.

By the end of the month we should have an ABA therapist in here.

-Tylers Mommy

NOOOOOOOOOOOOOO!!!!

2011-09-09T23:46:00.002-04:00

I have been so caught up with fighting the school for some things (may go into it later when I'm not so TICKED off) that I have forgotten what time it is.

It's September.

School has started...

What does that mean????

It means I must build a bubble around my son to protect him from GERMS. Summer = autism freak out time. He is healthier. He was away all school year with less time to do stuff with peers outside of school. Summer comes and I take him place and I had forgotten how different he is comparatively so I am hit BAM with autism. You get "use" to it. You forget how different your autistic child is when that's all you see and know for 9 months. So, I submerge myself into an autistic state of mind.

Then once school is settled in (or sooner if he catches something sooner!!!) his immune system fails him and I'm on nurse duty. Summer = therapy mommy. Fall and winter = nurse mommy.

First things first. Start the antibiotics!

-Tylers Mommy

Kindergarten

2011-09-07T21:11:00.009-04:00

This morning I woke up and had a kindergartner in my house. How did that happen!!! Where did he come from????

So I found out they messed up the busing and are fighting me tooth and nail. They want Tyler to wait at a regular bus stop to hop on a short bus (short buses are for the spec ed kids). Last year Tyler was picked up at our house, as all spec ed kids are suppose to. But a short bus can't get down our road so they had to send a minivan. Tyler can NOT wait at a bus stop on a busy road. He can tell you, factually, that traffic is dangerous, but when he's IN it, he is oblivious and very unpredictable.

So they are saying that there is no minivan scheduled to go to his school so he can't take one. I have been fighting for two days. As it stands, we are trying to get it on his IEP so it has to be followed. They told me it is seemingly a "small" issue (in regards to getting it onto the IEP) so I am hopeful. She did say she can't promise anything. They were fighting because they (his new school) didn't realize he was on a minivan the past two years. So, I have some hope. Until then I will be bringing him to and from school which is going to be tough but I'll do what I can.

So I brought Ty in today. Here he is this morning getting ready to head out the door:

And here he is in the car ready to go (sorry I have no idea why the font color changed):

I brought him to the cafeteria where he had breakfast. Thankfully the kid loves the school muffins! Who woulda thought!

Even though he prepared the cereal, as usual, he is not a fan:

He was really interested in everything that was going on around him:

Parents were not allowed to go back to the classrooms with the kids so this was the end of the road for pictures. Here he is lined up after his name was called with all the other kindergartners in his class in front of his head teacher:

Tyler is one of the ....if not THE ......youngest....but he's tall, possibly the tallest in his class (it's close with the 6yo's), it helps hide his age :).

I was told he gets 3 specials a week. Tomorrow is gym :)

I am not thrilled with the meal times. He eats breakfast at 8:45, snack at 10 and lunch at 11:45. That's 3 "meals" in 3 hours and then nothing for the other 3 hours. I wrote a note wondering if they were aware of this. I doubt there is anything they can do since they have a set schedule.

Anyways, I still have stuff to share about my boy. Like going to the fair! And our Maine vacation! So sit tight, it will come! Eventually.......

-Tylers Mommy

Autism - For Life

2011-08-31T23:44:00.004-04:00

As the summer goes on we are seeing increasingly prevalent autism in our child. I do not know that I would call it regression, but it is definitely much more "there" and obvious. Life is becoming more and more difficult.

We can attribute some of this due to being out of school the past few weeks. I wonder though how much "regression" can really be caused by being out of school for only 5 weeks. We can attribute some of this to his age. As Tyler gets older, behaviors and mannerisms become less and less socially acceptable. Sure a toddler twirling in circles on his tip toes screeching is cute. Not so much a 5 yo. Let alone a 5yo that looks like a 6yo.

Like last year, as our summer winds down, so do my patience. But this year is different. I do feel as though I am at my whits end, but unlike last year I do not feel like I need to commit myself to the psychiatric ward at the hospital. This is "different". This is more sorrowful. This is less denial. This is more reality. Yes he has tantrums...but they are different. They are very autistic. Over things like...an instruction booklet being upside down when it's not suppose to be. Crying and covering his ears squishing his face into me in the waiting room because 3 children are running around like chickens with their heads cut off and he can't handle the noise or commotion. Having to ask a host to seat us away from the other people and commotion because my child is grabbing my hands and putting them over his ears and pushing into me in tears. Freaking out because he NEEDS to know EXACTLY when we will be leaving for therapy TO THE MINUTE....and then getting frustrated because he doesn't even understand minutes or time. Throwing all his stuffed animals at someone because they continued to talk when he demanded people don't talk. Having to listen to the fact that his battery is dead in his phone for several hours straight in a loop. THIS IS AUTISM.

He is also exhibiting obsessions. Something he never has before. And I don't even know if obsessions is the right term. In some instances it is....but in some cases it's more of a "stuck on" something thing. For example, he wanted to charge his cell phone battery tonight (it has no service). But we didn't know where the charger was. We told him we'd find it another day. He didn't get upset by our response....it was more about him getting "stuck" on the fact that the battery was not charged and it needed to be charged. So over and over in a cycle (going from Daddy to Mommy, saying the same words, and repeating the cycle all night) he'd go over the cell phone battery problem. Over and over. This is a very autistic trait. One that he use to not have.

Today he was very out of control. His body was just everywhere. He was very excited that his friend came to play and he could not control himself. Tyler started Ritalin about a month ago. Even on that and wearing his weighted vest he was out of control. We have seen an increase in focus. A big increase. This is a HUGE pro with this medication. He is having more "there" thoughts, more understandable sentences and conversations. But we wonder if this is causing the "stuckness" and mini-obsessions.

All we know is that Tyler is in full fledged autism. There are not days where he is "neurotypical" as I have described many times in the past. There are no days where I say "see he doesn't look autistic". This has been heart wrenching and worrisome. I worry about our future. Our lives. I fear the constant struggle. It is EXHAUSTING and stressful and hard. I fear LIFE with autism.

-Tylers Mommy

8/6/2006

2011-08-24T19:24:00.005-04:00

On August 6th, 2006 at 7:03 pm, a little boy was born. He weighed 8lbs 1oz and was 19.5 inches long. He was named Tyler Xaviar:

It has been 5 years now, a half decade. And he has grown into a strong and beautiful person:

This child is my son :)

We celebrated his birthday as a family on the lake. Tyler LOVES the lake. He went swimming:

We caught a fish:

Played in the sand:

And had a good time:

We had cake:

And ate it too (well....sorta....Ty took a single bite. He is not a cake liking boy):

He was very cute:

And of course the best part is always PRESENTS!!!!!:

My beautiful boy. My kindergartener My "big kid". I am so proud of you. You lost your first tooth before your 5th birthday and you have lost your second tooth already last week. Time is going by way to fast. But you will always be my little baby and I will always love you to the moon............................ and back.

Thank you for being you :)

-Tylers Mommy

I Need To Catch Up

2011-08-22T10:44:00.002-04:00

We are back from vacation. I have so much to share from this month. I don't want to lump it all into one post. I have to share about his birthday, vacation, new medication and IEP stuff. I have so much to do today that I'm not sure I can write about any of it quite yet. But I will try!

-Tylers Mommy

Whats To Come

2011-08-05T10:57:00.002-04:00

Today we sit at 1 day until Tyler officially turns 5. Where has the time gone? It is just so amazing how 5 years use to feel like a life time to me, and now it feels like the blink of an eye.

Yesterday was Tylers last day of summer school so his summer as officially started. This morning he woke up happy but totally into doors. He found a key and asked me to read it and has claimed it as his own. Thankfully the door to his room is easily opened with a coin. At this moment he is using the key to "fix" my door. He likes the actual mechanisms that push into the door frame that keeps the door closed. Always has. That's what he is "fixing"" with the key. Hey, that's some imagination use there!

I present to you exhibits A and B:

Thats my crappy door right there. He has sense moved on to his door:

And thanks to the flash, I now know that his door needs a good cleaning!!!!

Tyler has had 4 sessions of ST. But last week the ST, who is WONDERFUL, announced she had turned in her 2 week notice. Yesterday was his last session with her. This means that he has to go back on the waiting list! You think that's frustrating?? The OT called me yesterday to let me know that once school starts and his time has to change from 2 to 3:30 or later, he will have to go back on the waiting list for that as well. How frustrating!!!! Both are recommending he be in social skills group therapy where both OT and ST attend. They feel he needs that the most. I agree :) So he's on the waiting list for that as well.

I have about 4.5 weeks with Tyler that I have to survive. One one of those weeks we are going camping so that will help. And I do have a free 1 week summer camp at our local Y. I think we can survive.

On Monday we have an appointment to meet with a pediatric ADHD specialist who is going to help us start medication as well. I hope that will be the key of our survival. It is really that bad, that we have to be thinking about meds, now, and that I have to use the word "survival". I worry about false hope though, as I a laying a lot of faith down on this.

We have a busy day today. It includes going to the ST office to get her final report on Ty, of which his psychologist is requesting. We will then head to the mall to see if we can find a few tee shirts for Tyler since he has officially grown out of 5T and most his summer shirts are to tight and short. Then we will head to the grocery store to pick up food and what I need to make his birthday cake because tomorrow my boy turns 5 and we are having a party!

-Tylers Mommy

Tylers 5th Birthday Party - Friends

2011-08-01T20:21:00.003-04:00

Tyler is having two birthday parties this year. For the first time ever he had a friends party!!!! And it went great :)

We had the party at a local bowling ally. They did a fantastic job with everything. We had our own hostess who was very attentive and catered to everything we needed. The bowling ally played music low as requested and was willing to turn off party lights if we asked. The pizza was decent as well as the party favors.

The best part is that most the kids at Tylers party were on the autism spectrum. They knew each other and "got" each other, as well as us parents. I'd like to share pictures.

Here is Ty attempting to play a race car video game:

Tyler tag teaming playing air hockey for the first time:

Tyler Dancing:

Pizza!!!!:

Tylers Scooby Doo cupcake tower:

Singing happy birthday:

Tyler does not like cake. But he loves ice cream!!!

And presents!!!

And more dancing:

Waiting for his turn to bowl

He was happy and hyper and running around having a blast :)

-Tylers Mommy

Goodbye SMO's Hello AFO's

2011-08-01T16:18:00.003-04:00

In a few weeks Tyler will be done with SMO leg braces and going into the larger/more restrictive AFO braces. Today he had an appointment with Shriners and the physiatrist recommended putting him in AFO's. His hamstring range is still OK and his heel cord range is still OK however the heel cords are tightening a little more and he still has tip toe range in the SMO and we want to stop ALL tip toeing. We are just doing what we can to try to prevent future botox or surgery. He gets casted August 12th.

-Tylers Mommy

We're Gonna Party Today!

2011-07-30T11:10:00.001-04:00

It is exactly one week from Tyler actual 5th birthday. But today we are celebrating!!! (We will celebrate next week too). Today will be Tylers first ever friend party!!!! 8 friends will be joining us for a bowling party! It's mostly going to be bowling themed since thats what comes with what I pay, but I stuck a few scooby things in the mix. Here is a sneak peak!

I know he doesn't look thrilled. He is being very Tyler here. He is watching TV and when Tyler watches TV he zones way out. Its either that or he is going bonkers and super hyper while still watching. We have done the non-ideal parental thing and put a TV in his room. The only thing it can do is stream netflix and only when mommy or daddy put it on....but we have so far found that he is much calmer in here when watching. This is so far seeming to be a great way to calm him before we go out (like to birthday parties!). The only issue with this now is that he doesn't like leaving in the middle of a show. But he is comforted by the pause button hehe. Anyways, wish us luck!!

-Tylers Mommy

The First Tooth

2011-07-29T13:20:00.002-04:00

I am very happy to report that Tuesday ended Tys illness. Can you believe.....only THREE days of being sick????? And only one of those days was bad! I am so stoked!

Anyways, two weeks ago Tyler had told me that he had bit into a rice crispy treat at school and it hurt his tooth. He asked me why I gave him something that would hurt him (awwww). I go to investigate and what do you know....he has his first loose tooth and the new one is growing in behind the baby tooth. The new one had already fully poked through. How did that happen without me noticing?? I thought for sure it would come out by last Friday...but it didn't.

It was tempting to yank it out, but true to this mommys fashion, I looked it up online first hehehehe. No, you should NOT rip a baby tooth out. Baby teeth come out due to the root dissolving. If you tare it out before the tooth devolves, it can cause infection. Who woulda thought? Well of course infection is definitely something we avoid in this house!

So yesterday (Thursday) Ty and I had dentists appointments. We both got a clean bill of health. They were able to get x-rays on him which showed that not one tooth was (and already is) coming, but EIGHT were. I saw the xrays and yeah, the Dr. said the rest would be here REALLY soon!!! I'm not ready for this! He's not even 5 yet!

Anyways the dentist said that the baby tooth was "almost out" and to go home and give it "50 wiggles" . After dinner Tyler started the wiggles and asked me to do it. So I got to 50 and it was so close. I got to 50 again and it still wasn't coming. It was then that I told him he needs to go brush his teeth if he wants me to wiggle the tooth anymore because he had just eaten and it wasn't a very clean mouth for me to stick my fingers in.

So he goes upstairs, brushes and comes back down and as usual says "mommy how does it look?" (he loves showing me his clean teeth after). I look and his tooth was GONE!!!! He didn't even notice!!! We looked everywhere and determined that it probably went down the sink. I was so sad :(. When I knew this tooth was coming out, I feared it would happen at school or in his sleep and it would get lost or he'd swallow it and I'd miss his first baby tooth. And well, I missed it :(.

We both cried because it was gone but then I thought, he's really hurt about this and he shouldn't be. He should be excited. So I put myself together and got excited and told him how awesome this was and he was beaming with a smile. The tooth fairy came last night. Together we wrote her a note that while keeping his teeth super clean for her, it fell down the drain and we were sorry. She still came! And she left him $5!!!!!

And so, I present to you, a cell phone picture of my babies first toothless smile:

-Tylers Mommy

Summer Sickness

2011-07-26T10:51:00.002-04:00

On Sunday morning Tyler was telling me he felt cold. By the evening he said his ears hurt a lot. I checked his temp and he had a low grade fever. Monday he sported a 103 fever all day and didn't feel well at all. Today he's looking a little better with a low fever so lets hope he keeps getting better for his birthday party on Saturday!!

-Tylers Mommy

Bed Time

2011-07-20T09:28:00.003-04:00

This was bed time last night :) Wanted to share his cuteness. As you can see he loves his coins. He checks on them every night and he searches for more. They are one of his (mild) obsessions.

Then he goes on and rambles. This is the part of his language that he's getting help with. He does this when conversing with peers. He's so cute though :)

You might have to turn your volume way up to hear him. Enjoy!

-Tylers Mommy

Summer

2011-07-19T16:09:00.004-04:00

So far summer has been pretty good.

Lets see here. In June we headed to Michigan to watch daddy compete his super mileage vehicle in trying to have the highest mileage car. They "only" got 341 mpg. You'd think that was a lot, but they were trying for over a 1,000 and people got over 2,000. They had problems left and right like their wheels falling off and the windshield falling off. They only made it on the track once so that's the only mileage recorded. But, they still had a great time :) It was a free trip for us as they allowed Tyler and I to come along for the ride. The day of the competition Tyler had a hard time in general. He got in trouble by someone who was running the competition and because of that day, the whole trip was not worth it for me.

Then Ty had his last day of pre-school. I am so proud of him. Not only does he need to learn the pre-academic skills for kindergarten, but he needs to learn all the social skills that most kids have naturally. He continues to work on them but he has come a LONG ways.

We had a great 4th of July weekend. We went to 2 firework displays and 2 bbq's. Tyler had a blast. That boy LOVES his fireworks. During the first display he asked daddy how fireworks work and they discussed it the whole time.

He then started summer school which he loves. It is in the same building again this year but thankfully it is much cleaner and the room is much more organized. The great thing about this is that his head teacher that he has in summer school will be his BCBA next year. So she's getting to know him :). They are having success in getting him to eat, as is proven by him not crying for food when he gets home. They have said they have to verbally prompt him to eat and they have to sometimes take him away from the group, but I am very glad to hear they are doing what they need to to get him to eat. He asks every day if he has summer school. It is very different from pre-k in that both high functioning and lower functioning kids are in the same class. There are TWO autism classes in this summer school for THIRTY kids with autism. Those are JUST the kids enrolled in the summer program in this town between ages 3-5. That is a LOT of children with autism.

Tyler has also begun speech therapy and occupational therapy in the new center. So far I am impressed as compared to where he was before. The therapy is MUCH more hands on and focused and they are strict with Tyler which is what he needs. So far he will receive 1 on 1 speech therapy but they said he will probably go into a group therapy social skills group soon.

We have been spending time at the lake where Tyler has TAKEN HIS FIRST STROKES!! Meaning, he has NO bubble or floaties or life vest and he can swim about 10 feet!!! He has no endurance or stamina which I definitely am sad/worried about, but the important part here is that he is LOVING it and is SO PROUD of himself. He is also dunking his head under water!!! Its hilarious, he covers his face with both hands (think peek a boo) to do it, but he is doing it! Here are two videos of him swimming!:

Tyler is having 2 birthday parties this year. For the first time we are inviting friends from his pre-k class :) It looks like we will have a good turn out. His friend party is going to be at a local bowling ally. We were then going to have a little party for him ON his b-day while camping, but we had to push the camping trip 2 more weeks out so just today I think I have decided to do a little family thing at the beach with grilling and cake and swimming and a fire.

Well, parenthood calls, I must go get Tyler out of the trouble he is causing ;).

-Tylers Mommy

Still here

2011-07-03T03:19:00.001-04:00

I know it's been awhile since I've written a post. I have a substantial amount of stuff to share. We have been SO busy its unbelievable.

Tyler starts summer school on Tuesday. I hope to find time soon to share everything.

-Tylers Mommy

2011-06-17T10:23:00.002-04:00

Tyler only has a few days left of preschool. I can NOT believe it!!!! I am getting quite emotional. I went and visited his new school and was not impressed. I fear for his health actually. It was crowded, the rooms were small, the windows were frosted over so you can't see out, only half the classrooms have a/c and the kids only get 15 minutes for lunch and 15 minutes for recess. 15 minutes of recess a day is NOT enough for a 5yo!!!! It's unhealthy! And they only get gym once a week.

I am very stressed and don't know what to do. His pull out area for extra academic help and social skills is so small and cluttered. It breaks my heart that this school system is so poor. I mean not even the wall clocks worked. NONE of them do!! The teachers had to put up their own. A few years ago, several schools were closed down and those kids were smooshed into the ones that remained opened. I think this is why everything is so cluttered. You'd think that would open a little bit of money to at least put a/c in the classrooms. And the cupboards and furniture in the rooms are literally falling apart and even the walls are cluttered with stuff. It was a place you'd see on TV in the news.

So we are investigating our options. Unfortunately we'd probably end up sacrificing a autism program for a safe environment for Tylers health. His IEP is on Monday. We are requesting speech therapy (he had an evaluation the other day which I will write about later) and a one on one at least for meals, 30 minutes to eat instead of 15 and try to somehow get him 30 minutes of outdoor time a day for fresh clean air.

-Tylers Mommy

Kindergarten Registartion

2011-06-06T11:41:00.000-04:00

Kindergarten Registration is due THIS Friday. Has mommy even STARTED the packet. NO!!!!!

I've had this packet for over a month now and have yet to fill it out. It's a lot of stuff! But, that is my goal for today.

-Tylers Mommy

IEP Time

2011-06-04T22:12:00.002-04:00

I hate IEP time. Hate hate hate it. This one is a real big deal cause it will set the goals for kindergarten.

I want him to have a one on one for meal and snack times.

I want more focus on his social/conversational speech.

I want them to put even more emphasis on his social interactions period.

Everything else sounds good....OT 2x/week, social skills group pullouts 2x/week, academic help pullouts if needed.

I'd like to update his goals for everything.

I think they are going to fight me for the one on one for meals. They kind of already are. His afternoon teacher has said to me that he seems distracted and often doesn't eat before the bus comes. Tyler can even tell me that he doesn't "have enough time". I asked him then what happens? He says "the bus comes". Here at home he takes a LONG time to eat his meals, his PCA helps him out most of the time. I'm talking over an hour, so it would make complete sense that he struggles at school too. I'm really going to put my foot down on this. I wish I had an advocate.

-Tylers Mommy

May 2011 Vacation

2011-06-01T11:16:00.016-04:00

We left on May 13th to begin our drive to Myrtle Beach. We did not stay on Myrtle beach because it's way to busy there for a child with autism. Last year we stayed on Garden City beach, the year before that we stayed on Merrels Inlet, this year we stayed at Sufside city beach. Out of the 3, we prefer Garden City.

Anyways, my husband and I traveled with the intent to go straight through. We agreed we'd stop to nap if need be. We did indeed stop to nap but we only slept two hours. We made it to sc at about 8 am, and we could not get into our condo until 3pm. We were exhausted so we went to a beach located at a camp ground. Daddy and I rested while Tyler played:

I have no idea why this portion is underlined!!

After a long trip and several hours at the beach, we had one exhausted little boy:

We spent most of the week with another family that I met online. She has a 4yo son with autism as well and we all had a great time. Here they are at Broadway at the beach....it was in the 60's and it had finished raining but the kids had a blast with the water spray. You can hear Tyler scream and laugh at the end of this clip:

One place that we all loved to eat at was Waffle House. We don't have them here in MA and it was soooo yummy. I think we ate there 3 times. These two pictures were taken at 9:30pm. Tyler was so hungry and we didn't have any food so I took him out to waffle house:

It took him 5 minutes to clear his plate!

Tyler and Daddy dug a HUGE hole. They made a swimming pool! It ended up being taller than Tyler and they made it kidney bean shaped. They spent all day on it so that the ocean could come and fill it up with water. Tyler and his friend went and played in it after:

Tyler enjoyed playing in the pool but he didn't get to do it to often. The weather was pretty cold at the beach, mostly in the 60's and low 70's, so when we got some short spikes, he hit the pool:

My boy in the ocean:

After our 1 week stay in SC, we then headed to NC to visit some friends there. We stayed a week. We had a great time going to playgrounds, having bbq's swimming in families pools. We headed to an aquarium and I was pleasantly surprised that Tyler really enjoyed it.

Here he is in front of the shark tank, with a diver:

We then went to a place called the Barnyard, basically a place for kids to go and pet some barn animals. Tyler LOVES horses. As you can see in these pictures, I think hippotherapy would do him a LOT of good:

After NC we headed to PA to meet up with another family with kids on the spectrum. On the way there Tyler was not feeling all that great. He hadn't slept much the night before so I gave him some melatonin in the car at about 8am. His cold was returning and he was just exhausted:

We went to a cute restaurant in PA called Rubys. The staff all wore old fashioned uniforms. The kids received some activity cardboard sheets to put together this.....and Tyler really enjoyed doing it with his daddy's help:

The following day, Friday, we left PA and we headed to NJ to meet yet another mother and her daughter whom I have "known" from an online parenting group for about 3 years now. It was great to finally meet her. We played at a really cool wooden park and then ate at Friendlys. We left there about 7:30pm and arrived home at about 11:30pm.

Tyler did suffer the wrath of the sun. It didn't get any worse than this here picture, but he did get a more widespread rash than he ever has with what looked like little red pimples all over his arms, some on his torso and legs:

And finally, my favorite photo. After a full day of playing on the beach, what better way to spend the late afternoon?

Here is a video of Tyler in the ocean. See how much he loves it????

-Tylers Mommy

Home Tomorrow

2011-05-26T23:00:00.002-04:00

I haven't disappeared. We are still away but expect to arrive home tomorrow night. We are having a pretty good trip. Tyler has been superb. He's ending the trip the way he started, with some kind of darn cold but other than that all was good. He was so well behaved and so happy. He had a spectacular time and I wouldn't change it for the world.

-Tylers Mommy

Vacation and Stranger Danger

2011-05-11T00:16:00.002-04:00

As Tyler grows older, his autistic traits surface more and more. One issue we are having is his inability to recognize stranger danger. Tyler is so chummy with everyone, but with women he just loves all over them. Any stranger anywhere. Hugs, kisses, rubbing them, holding hands. This could be dangerous in so many ways.

1) Some adults REALLY don't like this and get quite upset - trust me I know

2) Some adults enjoy it, tell me it's OK when I try to correct it which only encourages Tyler and leads to strangers loving on my boy! Which is creepy!

3) It is an invitation for predators, which of course scares me SO MUCH.

Someone in our neighborhood, whom he has never met and we only know them through a dispute, tried to take Tyler to her friends house (a few houses away). She took him by the hand and tried to lead him there. I told her no I was not comfortable with it. She argued that he was in good hands but of course I said no. Tyler was so upset at me :(.

This issue has been going on for a long time and school works on him with this daily, but it's only getting worse. I wonder if I should push for instruction on stranger danger. The BCBA sent me book recommendations and video recommendations so when we get back from vacation I am going to look into and order some.

Speaking of vacation, yeah, we're leaving on Friday!!! There is some financial issues this year with going, but we made it work. Tyler was begging to go. We really weren't going to do it but he just loves going to Myrtle Beach.

Since his stranger danger radar is broken, I am such a nervous wreck, more so than any other time we've gone. I'm going to have him plastered in ID's. Seriously, two bracelets and a tattoo. Yes I am THAT worried about it. Yes, Tylers pull towards strangers and inattention to what's going on around him resulting in him wondering off is THAT bad and I am truly scared. In addition to plastering him, we will be using the leash in crowded places.

So yeah, that's whats been going on. Poor kid is fighting something right now. I don't know if it's allergies or a cold. He's all stuffy sneezing, and the school told me today that he was complaining of ear pain. As a precaution I'm taking him to get his ears checked tomorrow to make sure they are clear....so we don't go into vacation with an issue.

-Tylers Mommy

Boston Trip, Swimming and Site Reading

2011-05-05T21:44:00.003-04:00

Our ride didn't show so I drove us out to Boston. Wasn't nearly as bad as I thought it would be. Some drama on the way home with Mr. T but I won't share that. Because of the gas prices and parking we decided to suck it up and drive home the same day.

We didn't really get much information, as usual. He still agrees Tyler should be on antibiotics every day. He did some blood work and said he can't really say anything about anything until he gets the labs back. So I should get a letter from him in a couple weeks.

My mom spent another night here and we all went swimming. We went 30 minutes before Ty swim class so that grandma could see Ty in action at swim class. Before swim class....Tyler VOLUNTARILY put his head under water....over and over!!!! He also jumped off the side a few times. However his stamina was VERY low. In swim class he can swim with a double bubble, SOMETIMES a single if he goes a short distance. But when he was with us he could barely handle a triple bubble and we had to hold him up most the time. He must have been wiped out.

Then class came and he did OK till it was time to jump off the wall and he reverted to old Tyler, really really really scared, crying and screaming :(. Slowly...progress happens slowly. One step forward, two steps back.

Then tonight I decided to pull out our box of site reading puzzle cards. He has only seen them one other time. If I put pictures and words out in a field of 3 (and they are 3 letter words) he was able to pick out the correct word most of the time! I was amazed! Astonished! Proud! It was awesome :)

-Tylers Mommy

Boston

2011-05-02T22:37:00.003-04:00

Tomorrow Grandma will arrive at our house and spend the night, and the three of us (Tyler, Grandma and Mommy) will be heading to Boston to see Tylers Primary immunologist.

I am bringing along Tylers illness history from this year as it is quite extensive. Tyler was again sick this weekend. Nothing big thankfully. Soar throat, bad headache, tummy ache and low grade fever Sunday. He was fine Monday but he did go to the nurse in the morning because he said his belly hurt.

My list of symptoms that I think are significant are:

-Back of knee pain

-Wrist pain at joint

-Ankles rolling

-Sun rashes (PLE)

-Frequent illnesses

-Chronic constipation

-Random eczema-type rashes

I think that about covers it? I mean, the rashes are annoying but I can live with those. But I can't stand to see him in pain and sick all the time. I REALLY HOPE they can figure this out.

We will be staying the night there because I think it will be to much on Tyler. Last time he got really car sick and everything was hectic, even when staying over the one night. He had a hard time with the stranger driving (insurance is providing transportation) and it was just tough on him.

So, I shall write when I know (or don't know) something.

-Tylers Mommy

Life with Tyler and Autism

2011-04-30T21:27:00.008-04:00

There are just a few hours left of autism awareness month, but for so many, every day is autism awareness day. I have wanted to write so much but have not found myself able to do so. All the thoughts floating in my head but I've felt to tired to write them all down. But I really want to share with you what Autism is to Tyler.

If you've met one child with autism, you've met one child with autism. Do you know what that means? Do you REALLY know what that means? It's simple. NO TWO CHILDREN ON THE SPECTRUM ARE ALIKE. AT ALL. So get rid of your stigmas. What you THINK you know about autism....well, maybe sometimes some of it is right, but there is WAY more than what you know, there is WAY DIFFERENT than what you know.

There are many children on the spectrum that you may no be able to "pick out". Meaning, you could be in a line at the grocery store and have no idea the little boy behind you who may be acting out, a little odd, or even typical, has a form of autism. Tyler is THAT child. Autism does not have a bodily feature. You may see a child doing something that makes you feel they are special needs, but I highly doubt you'd know it's autism. And I can assure you, that child is probably smart as a whip.

Now, lets focus on Tyler. As I have expressed...all the time....Tyler is "high functioning". He can walk, talk, eat, go to the bathroom, play, learn, love, express love and affection, communicate with others and socialize in some way. His outlook in life is good. Not ideal but it's good if we keep going in this direction. Life with a high functioning child is still very difficult. I know from experience!!!! The functioning of the child does not always relate to the struggles as a family and as it is to parent a child on the spectrum. I've had parents tell me that their lower functioning child is easier to deal with than their higher functioning child, or that their lower functioning child is easier to deal with than their neurotypical child. And I hear that the high functioning child is easier to deal with than the neurotypical child or the lower functional child. Again: IF YOU'VE MET ONE CHILD WITH AUTISM, YOU'VE MET ONE CHILD WITH AUTISM. Of course that does not one bit mean that they so wish and hurt and beg and plead that their child could be high functioning. I can't even imagine what that may be like. But the actual raising of the child can often be very similar.

Lets start from the least bothersome areas of autism for Tyler and work our way up.

So we will start with rigidity. Tyler is not very rigid. He is actually quite flexible. It does take some accommodations, but they are simple ones that work REALLY well. Wait, do you know what I mean by rigidity? Well do you know what it means to be rigid? Well with a child with autism, being rigid can affect EVERY part of their life. The way they eat, sleep, walk, which path they walk in the house, which way the parent drives home, what color clothes they are wearing, what their schedules are and staying on them, etc. Ty is actually quite flexible here. If he does miss something he thinks is going to happen he can get quite upset. Like running out of time for snack at school he comes home telling me about it and can't function until I give him his snack and tells me it's not fair and stuff.

Transitions - Tyler is also a good transitioner. Not as good as rigidity but pretty darn close. He needs a PECS rule card at school if a verbal heads up doesn't work, but usually it does. And it does at home too. You can't just say "ok Tyler it's time to go to swim class" out of no where. INSTANT meltdown. But you CAN say "OK Tyler, we have to go to swim class in 5 minutes" he is usually fine.

Sensory - There are certain situations and environments that are tough on Tyler. His function goes down when he is uncomfortable. He is more easy to spot as a kid with special needs when he's in an environment that's making him scared, anxious, excited etc.

Behaviors - Tyler still has behaviors like a 2 year old. Tantrums and all. They haven't been as bad the past month but if he doesn't get his way he's screaming and kicking. And this goes with not getting his way with other kids too. Discipline = tantrum. Waking up from the occasional nap = meltdown. Getting frustrated because he can't do something "right" - tantrum. Not getting his food fast enough = tantrum. Getting the wrong cup = tantrum. Etc. etc.

Stimming - Do you know what stimming is? It's when a child (or person) does something with their body repeatedly to simulate it. For Tyler, he stims by - jutting his tongue, gaping his mouth, flapping his arms, posturing his fingers or doing finger movements, getting up high on his tip toes, clapping, jumping and sometimes flailing his body. He also does this little dance where he kinda marches in place really fast. Tyler stims a lot in sensory environments, where he feels excited, anxious, scared, upset, uncomfortable etc.

Imaginary/play skills - Again, this rates at about a 2 year old. The good news is that we are FINALLY seeing some progress with this. VERY SLOWLY. I'm still weary of this outcome, but here at home Tyler does NOT play with his toys or do any kind of imaginary play. He does use his music stuff, and he will SOMETIMES do cause and affect things like building a robot from those play fake wood sets with daddies help, building a marble runner and infrequently building with blocks. BUT no toy soldiers, horses, cars, knights,pirates etc. He puts his toys in piles, he studies them, he manipulates them, turns them in his hands, looks at them from different angles, checks out their parts. This is VERY heart breaking to see as a mom. VERY. I want my child to play. Really play, get lost in his imagination. Imaginary play is believed to affect abstract thinking both as a child and later in life. Being able to see beyond black and white is pretty difficult for a lot of children on the spectrum. Again. Heart breaking.

Social skills - As it often is, this is Tylers most affected part of autism. Some children on the spectrum avoid socializing. His daddy is one of them. Tyler does NOT avoid socializing. He STALKS it LOL. He does socialize. But his socialization is in the opposite way.....he OVER socializes. He gets to close to people, stands on top of them, touches them, pets them, lays on them (and complete strangers). He says random odd things, make socially inappropriate noises. Socialization is pretty much the core to what autism is. Ty does not know how to hold conversations with his peers, how to properly approach a child, how to control his body and excitement when socializing, how to play with a child. Sometimes he may stay by himself because he has to work REALLY HARD to socialize. I mean really really hard. Some people have a very hard time with math. Tyler has a hard time socializing. Something that comes NATURALLY to neurotypical people, has to be LEARNED for Tyler, for kids on the spectrum. We have to TEACH Tyler that growling at people, squealing at people, randomly yelling at them, rubbing and petting them, is not socially acceptable. It takes a LONG time. It's hard, very hard for these kids. It CAN be done. But the journey there is harder work than any kind of academic work a child or person will receive in their life time.

Put it all together and you have Tylers autism.

The accommodations for Tyler that helps him to thrive.

Tyler wakes up almost every morning at 8 - 8:20am. He always brings his bear and red blanket into my bed with me. Even if it's just for a minute, this is something he HAS to do. He is then instructed to use the bathroom. Usually he says he doesn't have to go, but usually he has to go. Then it is the dreaded getting dressed. This could go smoothly, or it could be HARD. Things go a lot more smooth if I dress him, but I try to encourage him to dress himself. With a time restraint with the bus coming, I pick my battles. And if he is in the mood of dressing himself, he has one heck of a time staying focused on what he's doing. He gets distracted by EVERYTHING. He goes to pick out his pants and sees the measuring tape sitting on his dresser, picks it up, plays with it, forgets the pants. And so on.

After he's dressed we brush teeth. He usually likes this :). Then we head down stairs. Here I am getting his lunch bag together while I practically BEG him to get his shoes and leg braces ready for me to put on. I have to tell him OVER AND OVER and eventually I just get them. After snack is packed I get his leg braces on and sometimes I can get his coat on before the bus drives up, sometimes I have to do it in a rush. We walk out to the bus ( a mini van). I install his car seat but before I do he HAS to get in first. And he HAS to go over and tickle the other 3 kids. He gets in his seat, he buckles up. When he gets in the bus he almost never talks. He squeals. I hug and kiss him, say I love you and off he goes.

He gets to school and has breakfast. He has a place mat that has PEC icons on it (picture exchange). This helps him stay focused. He gets up, gets his breakfast, places it on the mat. The mat reminds him to use his utensils, his napkin, to eat the food, to stay in seat, and to throw away your trash. The class then ends breakfast and Tyler is shown his rules for that session. They are the same rules every day on a PECS card, one side is a smiley face, one side is sad face. Smiley face is: Use nice words. Use big boy voice (IE no screaming, squealing, wining and yelling). Keep hands to yourself. Listen do directions. You can stay with your friends. Sad face is you did not keep your hands to yourself, did not follow directions, i used mean words, you go to time out. He is shown both sides. And then he goes into the gym where he plays. When he does no follow his PEC card he gets one warning, usually with the visual of the sad face and then he leaves friends and goes into time out. Which has a PECS board too.

He then goes upstairs for video modeling and ABA social therapy. He may receive his occupational therapy here....as he gets one pullout and one in class therapy session a week. Here they learn and model appropriate social relations. How to be a good listener, how to greet/meet a new friend, how to play with toys and use your imagination etc. Every Thursday he has sensory yoga. He has his own weighted vest that he needs on a daily basis to help keep him focused in circle time and group activities. He often needs to sit on the bean bag chair to help him focus and control his body and in circle time a paraprofessional needs to sit near him to keep him on task.

Then he goes to the transition hour between the 2 classes. This is a sensory hour for all kids on the spectrum. He spends 30 minutes in the library with paraprofessionals and an occupational therapist, with the lights down low and low music playing. The kids are encouraged to relax. They may receive sensory brushing, therapeutic massage, back rubs, rocking etc. Tyler prefers to be left alone. Then he moves to the gym where they have sensory stations like rice tables, sand tables, shaving cream etc. Then he goes to lunch.

He has lunch with his second class, his integrated class. His integrated class is not ABA based, there are more kids and less paraprofessionals. He eats lunch, often with great difficulty to keep still, focus, etc. He needs constant reminders to sit and eat. Sometimes he won't eat he's so distracted. Every Thursday he has feeding group. It is feeding therapy for kids with feeding issues. Tyler is a very picky eater.

He is then presented with his PEC rule board again. It follows him. And they head to the gym. Then the go up to the classroom where they do circle time and centers. It is much less structured but he seems to do well. He takes his weighted vest with him (provided by the school) and again wears it for group and circle time. In this class he learns pre-academic skills.

At 2:50 they head down to the cafeteria for snack. Sometimes they aren't able to get down there and when he gets home he is so off and miserable for about 2 hours. I know when snack didn't happen, when his schedule got messed up. He then gets on the bus and heads home.

Sometimes the transition into the house can be tough but it has been greatly improving. If it's a Thursday he has swim lessons right when he gets home. The quick transition is rough for him and sometimes its a lot of screaming, protesting and crying.

At home he has 2 PEC boards. A community board and a home board. The community board goes out with us when we leave the house. The happy face side says keep your hands to yourself, do not wonder away from mom, do not growl at people, keep hands to yourself, keep arms length away from people, follow directions, use good listening and you get to stay with your family. Sad face side says if you don't follow those, you leave family for time out. It's very important that it says "leaves family" or "leaves friends" because THAT is the actual punishment.

His home based card says follow directions, don't hit the dogs, use big boy voice, stay with family. Sad side says did not do the rules so you leave family and go to time out.

Using the PEC board in public can be tough. You get funny looks and with Tyler not LOOKING like he has autism, people wonder what the heck you are doing.

Anyways, after school he kind of wonders around the house, watches TV, paces, manipulates and goes through his toys (doesn't play with them), makes sure I stay in the same room as him and if my attention isn't on him all the time boy does he know. Then it's dinner time and sometimes he will whine until it's in his mouth. He doesn't eat a lot of foods so I often have to make him separate food, sometimes even gerber baby food purees.

Baths are easy and he looks forward to them now. Getting dressed for sleep is always a challenge. But he is a very good listener about bed time. He almost never argues with me. He takes melatonin or he'll lay awake for HOURS in bed. He does not like me going downstairs when he's awake. I am trying to break him of this. He stays in his bed all night. Never comes to me. He doesn't even get out of bed in the morning until I give him permission. I tried telling him many times he can get up to go potty if he needs to at night, he can even call for me and tell me, but he doesn't. He might wake up crying and I have to pry it out of him that he has to pee but that's rare. He's very afraid of the dark and doing things in the house without an adult being in the same room so I don't know if that's why he won't leave his bed.

So, that's our life.

-Tylers Mommy

Why Hello There!

2011-04-25T18:39:00.002-04:00

It has been a little over a week since I have written. Well, you know what they say, no news is good news right? Right.

Tyler had a pretty darn good week off. We took him biking 3 times, swimming 2 times and visited grandma. Behaviors were rough at first but evened out by mid week and I survived!

Tyler has made it through 3 full weeks without being ill. He had some lingering stuff at first but he made it through 2 weeks straight of school and the full week off feeling great :). He should have turned the corner and we should be keeping on this trend now through summer. Knock on wood!!!

I won 1 week free of summer camp for Tyler at our local YMCA and I'm definitely going to use it! I may save it for the end of summer when I am at my whits end.

We had a good Easter Sunday and we hope you did too. He found the eggs the Easter bunny hid and we had pancakes and bacon for brunch. We then headed over to aunties for dinner bbq (despite the rain) and we really enjoyed ourselves. I'd like to end this post with a video of Mr. T on Easter morning :)

http://www.youtube.com/watch?v=OpXFoxDnwuk

-Tylers Mommy

Fixed?

2011-04-13T19:44:00.002-04:00

So they said the braces are probably hurting him because he's still tip toeing in them. It causes the braces to go at a different angle so it can rub his leg. They said he's able to tip toe in them because the back tab is to loose so he tightened it. After that he had Ty walk and he was up on his tip toes (very easily). The guy said "walk on your heels not your toes". Well, yeah, I don't think this is gonna work. He shouldn't be able to get up on the braces.

-Tylers Mommy

Soooooooooo

2011-04-12T21:37:00.005-04:00

This week has been.....fun..... so far. If it's not his health, then it's autism. And this week is autism....mostly.

His asthma/secondary immunologist is continuing his prednisone for two more weeks since night time coughing has returned....and in barking form no less. We see her tomorrow as a follow up. After which, we will then go to the orthotic dude to have Tys braces adjusted because they caused injury to his legs. It doesn't make sense that they did. He has some bruising on the side of his leg, but the brace is real wide up there, they don't press on his leg at all, only if he'd lean that way or kneel on them. But that shouldn't cause this kind of injury. Hmm, maybe I'll show you a picture so you can see what I'm talking about. This was taken right after he got home from school and the braces did this to him (cell phone quality photos). Now they have turned into bruises:

Right otter leg:

Left outer leg:

Yeah, we can't have that. His AFO's back when he was at Shriners did that to him too but actually worse. It rubbed away skin and left a mark for months.

So, because of these appointments, Tyler will have a half day Wednesday. There is no school Thursday or Friday due to parent teacher conferences. I will be meeting with his social skills teacher on Thursday and his integrated teacher on Friday. Then next week he's on vacation! We hope to visit Grandma and spend a few days there.

-Tylers Mommy

So Far So Good

2011-04-05T15:45:00.001-04:00

Ty woke up this morning in a FABULOUS mood. He even dressed himself!!! It was great! I called and checked on him at 1:30 and the teacher said he seemed fine. But when the bus dropped him off, the bus monitor said that he asked to be taken home first because he felt real sick. When I asked him where he felt sick he said his tummy. Mommies tummy has been nauseas all day too. It better not be anything nasty, especially the two of us at the same time!!!

-Tylers Mommy

Ear Again

2011-04-04T21:53:00.002-04:00

Yesterday Tyler was telling me his throat hurt when he swallowed. Today he was saying the same thing and asked me to give him sick medicine (elderberry extract). His nana also gave him a "cold coin" necklace to wear. Apparently you wear it against your skin to help keep sickies away. Tyler has never wanted to wear it. But today he asked to wear it. Awwww. Then at bed time he said his ear hurt again. Looks like we'll be needing another antibiotic. I won't call anyone tomorrow unless he says it hurts again though.

-Tylers Mommy

Birthday Party

2011-04-03T09:50:00.002-04:00

Ty went to a birthday party yesterday. Mommy is sick and I had no voice so I called in his PCA to help me out. Thank God I did cause it was ROUGH. It was held at interskate 91 where it is always busy and yesterday was no exception....

The place was packed and it was instantly over stimulating for Tyler. It took some time to get him to leave my side and stop smooshing his head into my leg. We got him on skates. He has skates at home and occasionally puts them on and gets around the house by holding onto everything. He had been to this place before and skating was a nightmare. I thought since he had a year of his skates at home it might go better. Nope. He struggled to get on the floor with the assistance of daddy as he cried and freaked out. As soon as his feet it the skating floor he started screaming and crying. Daddy took him off the floor immediately.

We got him off the floor and he wouldn't let me leave his side. He had a temper tantrum until we removed the skates. Then he asked for a fake tattoo and we said no. He went into a screaming fit. I had to walk into another room to keep my cool. You could hear the screaming from in the other room. A man was in there and I said "yup, that's my kid". He shrugged at me. Tyler found me and stated he wanted a drink. I went to the birthday table to get water and he screamed no I want the blue drink!!! (Blue icee). I told him no he could have water and that was it. Yup, another temper tantrum. Daddy went and bought him a snack bag of cookies (ugh) and that made him happy for.....2 minutes. Then the PCA came in (she was trying on skates to see if she could get Ty out onto the floor). He walked up to her, hit her and yelled "give me a token now!". Yeah, that was an instant time out filled with more screaming and crying.

Tyler spent the first 1 hour and 15 minutes in tantrums, crying and/or glued to my side. Then it was time for pizza and cake. He sat 2 seats down from the birthday boy and yeah, had a little tantrum about that. Then he started warming up to the boy next to him. He is also on the spectrum. Tyler asked him what his name was and was trying to touch him, sit on him, and invade his personal space. He of course didn't like this. Other than that pizza and cake went OK. He asked for pepperoni pizza like 10 times and the server kept telling him they only had cheese. I thought that was going to be a huge meltdown but it wasn't thankfully.

Then the kids were waiting for presents and Tyler got bumped down on his bum from a skater and he acted like he got run over by a car screaming like a banshee. Then it was time to open gifts and he was standing next to the birthday boy and he got pushed out of the way by a girl and he ran to me trying to cry quietly but he was SO upset. The birthday boys grandmother, a close friend of mine, tried to set Ty up with a "special" chair next to the b-day boy but he wasn't buying it. Then it was time for the b-day boy to get into the box, where they blow air in and he has to catch as many coupons as he can. In the shuffle to get out there, Ty was once again knocked over by a skater. I scooped him up and rushed out so we wouldn't miss the box as he cried on my shoulder the whole time. When the b-day boy was done Tyler asked when it was his turn and I told him he couldn't. Yup, another cry fest.

Thankfully all that was left of the party was for the b-day boy to unwrap a few more gifts. I rushed Ty over to him and he got to sit right next to the b-day boy while he unwrapped the gift from Tyler and a few others. Then we got out of there. It was a nightmare :( I think any other skate parties in the future (ice or roller) we will show up during the last hour to skip the skating parts. A party has never been that rough for him before :(. I was not feeling well and had no voice so I didn't have much rein on the situation and he PCA wasn't helpful either....at all.

Today I am feeling a little better and my voice is back a little. We are hoping to take Tyler bowling.

-Tylers Mommy

Go Blue For Tyler

2011-04-01T12:02:00.001-04:00

In honor of light it up blue for autism, my blog has gone blue for April 1st and April 2nd.

-Tylers Mommy

Still Sick

2011-03-29T21:46:00.002-04:00

Ty is still out of school. He is doing a lot better but he's not sleeping well due to coughing and still has ear pain. Today they switched his antibiotic to cefprozil. Yesterday he went to the asthma doctor and they said his ear was pretty red (on Saturday it was barely red) so they didn't think the antibiotic was working. Trick is to give him one that won't cause diarrhea. He also started on prednisolone for the couch. He won't be going to school again tomorrow. He's so close to being able to go but he's not sleeping at night. Last night he had a 1.5 hour cough fest.

Tomorrow he is getting his 24 hour ambulatory EEG. I fully expect that to be normal and think the test is unnecessary but the neurologist wanted to do it so whatever. No harm done really. This evening he is complaining his stomach hurts, back hurts, head hurts and knees hurt. I THINK most of that is probably due to the continuous coughing. I hope and believe he'll be well enough to return to school Thursday.

-Tylers Mommy

Update

2011-03-27T12:43:00.003-04:00

Yesterday was hard. Tys fever topped out at 104 and his coughing fits were severe causing choking and gagging. Each time I'd rush him outside. During his worse fit he vomited out there. LOTS of mucus.

His legs started hurting him bad so I spent hours rubbing and massaging him. That seemed to comfort him. He could not sleep. He'd doze off and within ten minutes wake up in a coughing fit. Around 9:30pm I gave him some cough syrup with codeine. By 10 his cough was quiet and it lasted about 45 minutes. He still couldn't fall asleep though. Then around midnight he went into another severe fit. Got him through that and he finally fell asleep around 1am.

Over night he'd wake about every 20-30 minutes with some coughing. Around 5am he woke up in a major fit with gagging and heaving. Thankfully he did not vomit.

This morning he woke up with NO FEVER!!! Right now he's sitting at a borderline fever. He did not sweat a lot which is what he does when the fever is gone for good so I don't think he's completely fever free yet but what a difference today. He's up and around more, walking around and not moaning as much. He's still coughing pretty much constantly with bad fits here and there. I don't want to give him the cough medicine unless he needs to sleep because it has codeine in it.

I don't think he'll make school tomorrow with this cough. I think instead we'll be working on obtaining steroids. And that will be absence number 27 from being sick this year.

This time around he is eating a little. He's not drinking enough, but he isn't completely refusing. He's getting in about 6 ounces in a day.

-Tylers Mommy

Sick

2011-03-26T14:11:00.002-04:00

Yeah. Again.

Started Friday when he got off the bus. Looked pale and had ear pain. Took him to the pediatrician and cancelled OT. Pediatrician said ears looked good.

Last night Tyler was up every 20 minutes coughing. Around 2:30am he went into a severe coughing fit. It was really scary. It was close to ambulance worthy. I got the nebulizer out and got him some albuteral and advair. That took the edge off but 20 minutes later he was getting bad again. It's the croup type cough with stridor. I took him outside and thankfully that did the trick.

Took him back to the pediatrician again today. They finally see the ear infection and said he has croup (yeah, I knew that). So stopping the augmentin, going on azithromycin again and then will resume augmentin when done.

He still hasn't eaten or drinken anything today. Working on that.

-Tylers Mommy

Please Please Please Please

2011-03-23T12:56:00.001-04:00

Pppppplllleeeeeaaaasssssseeeeeeeeeeeee don't let him get it.

I'm a mess. I am emotionally unstable. A wreck. Probably abnormal. But half this household has some kind of nasty intestinal bug (daddy and uncle). Ty and I so far have no symptoms. If Ty gets it he's screwed. It's like....a free ticket into the ER and/or the hospital.

I have to pick Ty up for OT. I will try and keep him away from the house, and sick people most the evening so that when he gets home tonight, all he does is go straight into his bed. I will try and keep him away from the upstairs bathroom and ask the sick people to only use that one.....

Trying to hold on to my sanity. Hoping that my stress is for nothing!!!

-Tylers Mommy

Light It Up Blue!

2011-03-22T14:23:00.002-04:00

Autism speaks is running their second annual light it up blue campaign.

April is autism awareness month. April 2nd is world autism awareness day. Autism speaks, and parents and people of autism, are asking people to "Light It Up Blue". We are asking homes, businesses, schools, churches to change their light bulbs on April 1st and April 2nd, to blue bulbs. If you buy them from Home Depot, they are cheap and $1 from each purchase goes towards autism speaks for continued research on autism.

Visit www.lightitupblue.org for more information and some stunning pictures of the empire state building lit up in blue.

What a dramatic and beautiful way to raise awareness.

I will be participating. Will you?

-Tylers Mommy

Feeling Better

2011-03-21T22:22:00.004-04:00

Tys leg is feeling better :). I kept him off it much of the weekend and did epsom salt baths and massages and stretches. He was on it a little on Sunday at the parade.

Tyler was sick Saturday and was still recovering Sunday but antibiotics and motrin had him well enough for the parade. He only limped a little on and of and at one point grabbed his knee and said owe owe owe and I asked what happened and he angrily said "nothing!".

Today he woke up and told me his belly hurt, that he was sick. I sent him to school anyways. Either he was faking or he was hurting due to constipation. He came home sleeping on the bus. The bus drove up at 3:25 and she said "he's been sleeping for awhile" so I dunno if he fell asleep at school. Probably not. He slept till about 5:30. His school note said he only ate 1.5 chicken nuggets at lunch and drank 5 ounces.

Tylers pediatrician called this evening. She said that she thinks he needs to go back to see the Boston immunologist and asked how his drinking was doing. I told her about his afternoon sleeping and crankiness and she said if he doesn't turn around soon we'd have to discuss an NG tube. I definitely didn't see that coming. I thought NG tubes were for people who didn't eat. Tyler eats. Maybe not so much right now as he's getting over this huge period of illness but it's drinking he has issues with, not eating. I asked if there was any way to tell if he really needed it, cause I definitely don't want him to have one if he really medically didn't need one. She said "weight loss". He has lost 3 lbs. But I think that's mostly from being sick so much.

She didn't specify a time frame for improvement. The thought of a tube in his nose...well I can't see myself going through with it. She actually mentioned surgery but you don't have surgery for an NG tube so I'm hoping I didn't mishear her. I definitely couldn't put him through surgery for it unless he was in absolute dire need and I don't think he is at this point. So anyways we will continue on with trying to get him to drink.

-Tylers Mommy

I Don't Know What To Think

2011-03-19T10:08:00.003-04:00

Tylers school nurse and 2 PT's saw him yesterday. His left legs range is at 55 degrees, a slight improvement since January. His right leg is at 45 degrees, which is worse than it was in January (ideal range is 90). She said he's definitely tight and definitely needs the braces. She is also the first person to say that the pain he is experiencing is probably from tightening. He had a hard time again in the morning yesterday and getting off the bus but as the day went on the school said he seemed to be doing better. He got home and had a play date with his friend after OT (which wasn't an OT appointment, I wrote it down wrong!) and he was getting around pretty darn good on it. When standing he keeps the knee bent and the foot on tip toe.

This morning he tried to stand on it and again stated he couldn't walk. He also woke up with a low grade fever, a nasty cough and ear pain. He doesn't appear to be in a lot of ear pain but I'm gonna have the weekend pediatrician take a look to make sure it's not infected so come tomorrow he's not in extreme pain as ear infections can do. If it is an ear infection then it explains the fever. I'm actually kind of hoping it's an ear infection and not another virus. And then I could say the cough is a secondary thing from the nasty virus he had earlier in the week. It sounds very bronchitis like. While we are at the pediatrician I will have them look at his knee.

-Tylers Mommy

What We Are Dealing With

2011-03-17T22:22:00.003-04:00

I wanted to share a video of whats been going on. Now, this is Ty at his best today (which is why he's outside). When he got home he could barely walk. After the appointment which got us NO WHERE we came home, got him to walk around a little, rubbed his leg etc. and after a little while he was walking around like in the video. We've been working on getting him to ride the bike. He's very afraid but we work on it often. Oh and the clips or short cause I took the video with my cell phone.

As for the physiatrist? He didn't know what to think. Tyler WAS at almost his worse walking wise at the appointment but he wasn't in horrific pain like he was this morning. I mean I wish I could have gotten it on video cause I just can describe it. So he doesn't know whats wrong and said to just try motrin. Unacceptable.

-Tylers Mommy

You Can See It In His Face

2011-03-17T14:54:00.002-04:00

There are so many things in our children's lives that affect them negatively. And it breaks our hearts. The flu, another child not liking you, really wanting ice cream and it's so hard but sometimes you have to say no. But the one thing that I can not stand the most, is seeing my child in pain.

For the past few months Tyler has been in a lot of pain. Usually in his knees. It was his left, and now it's his right more. Tuesday evening he was screaming for me to fix it,begging me to take him to the doctor at that very moment. He was also complaining of pain in his thumb. This morning, same thing. Lots of pain. He couldn't walk for the first 30-45 minutes after waking up. He was crying so hard. But he eventually got up and walked. I got him on the bus where he shed another tear. I called the school and asked the nurse and physical therapist to check him out. The nurse said he told the teacher his legs hurt. The nurse and physical therapist took him aside and checked him out. They said he complained his knee hurt and they manipulated it and said it definitely hurt more upon extension, which I already knew.

I then called his physiatrist, feeling frantic because I couldn't make his pain go away. I've mentioned the pain several times to his pediatrician. Their solution? He can bend his knee, so just give him tylenol. But it's getting a LOT worse, where he is refusing to walk frequently. Seriously, there is SOMETHING wrong when a 4 year old can't walk. The nurse has me speak to the doctor directly and he wants to see Tyler today. He wants to make sure the pain isn't radiating from his hips and possibly get xrays. I then called the immunologist and asked if arthritis (a possibility) can cause the frequent illnesses. She said no. Then at 2 I called the school again to see how he's doing. The teacher said he complained at lunch, got around OK and participated in most activities but said he couldn't for a couple cause of the pain.

I know this is a crappy cell picture. This was taken yesterday when we were at an appointment. He was in the stroller cause his leg hurt:

You can see the pain in his face.

-Tylers Mommy

Looking Better

2011-03-16T13:09:00.002-04:00

Tyler slept with me last night. He slept on and off during the day and went to bed for the night at midnight, at which point he was still sporting a 102.3 fever. Around 5am I felt his forehead and he felt COLD. He woke up at 10am and was fever free and is still now at 1pm :). He's still laying around but his color is tons better and he's not crying in pain anymore.

Last night was awful. Nana was here and Tyler was screaming and crying in pain from his legs, begging me to take him to the doctor or the hospital. We have an appointment today at 2:30 with his secondary immunologist to discuss things. I told him we were going to the doctor today so if his knee still hurt he could tell her. Well he hasn't complained once about it today :). Anyways, we'll be discussing these frequent illnesses.

-Tylers Mommy

Flu & Angry

2011-03-15T15:58:00.002-04:00

Ty went to the peds. His ears are clear at this point thankfully. The ped says it sounds like the flu again. He was VERY rude to me.

I was expressing how upset I was as tomorrow marks 25 days absent. He said obviously you wouldn't send him to school like this, but he insinuated that I keep him out for the sniffles. I was so upset. I told him that the schools policy is no vomiting, diarrhea,excessive runny nose, excessive sneezing,excessive coughing and temperatures above 100. He's like "100 is not a fever". I'm like well I know it isn't clinically but that's their policy. He said "so what...do they take his temperature daily and send him home any time it hits 100?". I said no they take his temp if he IS sick. They've only sent him home once when he wasn't sick. He was having significant abdominal pain but it was constipation. I mean seriously, he obviously doesn't know Ty. God knows for my sanity he needs to be in school as much as possible. My poor baby is laying in my bed right now moaning with a 103 fever with bad leg pain.

I had to go back in the chart with the stupid doctor and account for the past month and 14 absences. He's like yeah I guess they do add up.

I don't know what we can do at this point. Tyler is eating and drinking this time around so I'm not worried about any emergent issues but he is sick and miserable and it SUCKS. He's whining for me to make the pain go away at this very moment!

-Tylers Mommy

Day 2

2011-03-15T10:47:00.002-04:00

Tyler is currently in an epsom salt bath. He woke with a 102.5 fever and crying that his legs hurt behind his knees just like last night. They seem to hurt if he straightens them. He also says his throat hurts and his ears hurt. I called the pediatrician and finally got through. He has an appointment for 1:15 today.

-Tylers Mommy

Knocked Back Down

2011-03-14T21:55:00.003-04:00

Yes. That's right. Don't adjust your eyes. Tyler is sick....again. He's showing flu signs....again. 102 fever, moderate body aches, chills, soar throat, some sneezing and coughing, headache. Came on pretty suddenly.

I'm gonna take him in tomorrow, mostly to discuss the crazy fact that this will be absence #24 this year. He did eat a little dinner and took a sip of water.

-Tylers Mommy

Weekend In Review

2011-03-13T22:04:00.003-04:00

We had a pretty good weekend. I was worried we'd be stuck inside all day but the weather was just warm enough to spend some time outside in the 40's. On Saturday I took Ty outside to play. We can't go anywhere because everything is wet and flooded but he was able to play in our ally of a road (completely safe). The neighbors were outside. They have a little girl Tylers age, but usually her mother doesn't let Tyler play with her. I don't know why. Ever since she found out Tyler was on the spectrum it seems like she doesn't let her.

Anyways the little girl was playing with chalk with Ty and her mom saw her and screamed at her. She went back to her house (like a car lengths away). Ty made his way up to her then came back to me. I said "are you allowed to play with her?" he said "she said she can play in her driveway". I guess her mom wants to make sure Tyler doesn't do anything...ASD. That's my guess anyways. Very sad and ignorant.

Then daddy and I tried to go on a date. We went to the movie "Unknown" but on our way there he hit a pot hole and blew a tire on his new car. He changed it really quick but we were already a couple minutes late for the movie. So our 7:30pm date got bumped to 9:30. It was worth it though because the movie was good and we enjoyed ourselves.

Today we all went for a nice walk with the dog. It was a little to chilly in the 40's as the sun came and went but it was still nice. We walked 1.5 miles! Yes, Tyler made it that far!!! Pretty amazing huh? He did start complaining of feet pain....but not till the very end. Daddy only had to carry him about 1/4 of a mile.

However when we got home, Tyler complained of a headache (first time he has ever complained of one before), neck pain, back pain, belly pain and leg pain. He said his whole body hurt. No fever or anything. Hopefully it's nothing. He had times where he just wanted to lay down. I hope he can make it to school tomorrow. At 2:00 I have to pick him up to bring him to get casted for his new braces.

Anyways, that was pretty much our weekend.

-Tylers Mommy

Routine

2011-03-10T22:33:00.005-05:00

We are trying to get back into our routine here. The bus keeps coming early and Ty keeps taking a 2.5 hour nap through dinner time. If the naps keep up through the weekend I might request his iron levels get checked as they can drop after being ill and undernourished for a length of time.

Tylers behaviors also still indicate that he hasn't adapted back to his usual routine. This week was pretty busy though with appointments. Yesterday he saw the psychologist and the OT. We spoke about the drinking a little with the psychologist and we are going to try the let him drive method. If he wants to drink he'll tell us. The OT visit was great. She did a lot of sensory work with him and does not take his crap. That's the kind of person I need working with him. I did the childbrain test again today to see where he is on the spectrum. According to it, he has gotten worse, scoring a 98. In prior times he has scored in the mid to upper 70's. As he gets older his autistic characteristics are becoming more and more apparent. Does that mean he's getting worse? Not in my eyes. Not at all. But as each child grows and develops and learns new things, so does autism.

On Tuesday we returned to Shriners to see the physical therapist. I actually learned a lot from her. First off the "orthopedic specialist" is not actually an orthopedic specialist. I don't know how I missed that one. He's actually a physiatrist. A lot of people had been telling me that Tyler should see one but I did not want to add ANOTHER specialist to his army. Ty has been seeing this man for about a year now and I've liked him a lot. He listens and takes my concerns seriously and he makes sure I'm comfortable with the plan. He has always believed in trying to work with the issue and work towards improvement where as the orthopedic specialist at Shriners told us there was nothing we could do, he'd never "get better". God must have known a physiatrist is what we needed as he gave me when without my knowledge LOL.

The therapist taught me some stretches. She said the notes that were sent to her stated his heel chords were pretty tight, but she found them to be not bad at all and that he could actually get them slightly past neutral (which she said was a good thing). She said his right hamstring was tighter than the right....but it's his left leg that gives him the most trouble. She said neither of them are "bad" but she couldn't get them to neutral.

Added : We are at 23 absences so far this year.

-Tylers Mommy

Sinking houses, Orthopedic, Oh yeah, we're home

2011-03-07T16:43:00.004-05:00

I didn't share...

We came home Saturday. Tyler passed his lovely virus on to me. I felt the fever coming on and the nausea. Tyler drank a juice box around 2pm. 4 ounces. I figured that was breaking the ice. I asked if we could go home based on that and they said yes. I knew I couldn't stay with him that night, I'd be way to ill and I had no one else that could. As we were working on discharge, his teacher came in to visit him. He was SOOOO HAPPY!!! She did turn to me and commented at how skinny he looked. Yeah. He has lost 3 lbs :(.

When he got in the car Saturday he crashed. He fell asleep immediately. We brought him inside and he laid on the couch the rest of the evening. Sunday he was getting a lot of his spunk back. He could go on for 10-20 minutes then need to rest. He ate a pear, 2 bites of chicken, and drank about 6 ounces of fluids.

Today I kept him home and his appetite is really picking up. He just ate a waffle for dinner. For breakfast he had a waffle as well. For lunch he ate 2 bites of a piece of pizza and a few pieces of chicken. He also drank a half cup of chocolate milk and 2 ounces of juice. He has tons of energy now and he is having some major behavioral issues. I hope his return to school tomorrow helps him to regulate this as hes yelling and screaming at us, hitting us, demanding things, and screaming and throwing things when they don't go his way.

This morning he had an appointment with the orthopedic doctor. He now does his clinics at Shriners. I am unclear as to whether he is affiliated with Shriners but I like him a LOT better than Tylers Shriners doctor. He has been following Tyler for almost a year now. I took him in because Tyler has been complaining of knee pain on and off for quite awhile now and I've seen his knees buckle a few times. I end up having to carry him in the mall and in stores which is something I'm just not able to do much anymore as he grows.

The orthopedic specialist said his hamstrings are tight which is causing all the pain and buckling. He will need regular daily stretching now. This is something his PCA can help me out with too. He also saw Tys sneakers and noticed that the tops of them at the toes (not the end, the top) were worn down through the fabric. Obviously from toe walking and foot dragging. He asked me how I felt about him going back in the braces. I haven't had Ty wear the braces in awhile because 1) he was still able to get up on his tip toes and I stopped seeing improvements and 2) he has outgrown them. He told me he thinks Ty needs them full time as his shoes look "concerning". He tried to comfort me by saying "remember this doesn't mean he has to be in them forever".

So Tyler is going for casting on Monday for new braces. I don't know if they will be the same as these (smo's) or if they are going to do AFO's this time.

Tyler also had a pediatrician followup today from his hospital stay. It was fine except one thing. In the hospital the nurse took the time to scoop up one of Tylers bm's to be tested. They checked on them throughout the night and the next day they let me know the lab probably wouldn't be ready till Monday. Well, the doctor said "it never went through". What does that mean???? Did they not put the order in? Is his sample just sitting down there?? Did the sample get lost?? Seriously, I'd like to know what virus put my boy in the hospital.

And last but not least.....

I got home today and saw the fire department at my neighbors house. My neighbors house is one parking space away from mine (yeah we don't have yards). They leave and I go ask what's going on. Her house is sinking!!! She took me around the side and her bottom step is gone and there is a big hole. She isn't allowed to park in front of her house. DPW is trying to determine if she can even stay in the house (yeah I'm not sure of why DPW). She told me that it was heading our way. So we are going to be packing up some bags in case we gotta get out fast. The word is that it's a sink hole. We have some major flooding here. We got 3 inches of rain over night which melted several feet of snow. Our road is the worse in our town and there are no drains. It's pretty bad.

When it rains it pours. It always seems to be pouring here.

-Tylers Mommy

Good Morning

2011-03-05T08:05:00.002-05:00

I got 5.5 hours of sleep last night, thankfully!!!

Yesterday Tyler fell asleep from 5-8pm. So as you can imagine, he was up LATE. A little after midnight he ate some ice cream!!!! He ate 1/2 cup. Unfortunately soon after he said his belly hurt. But it has yet to come back out :). We'll see what happens when he's up for the day.

So, Tys diarrhea smells AWFUL and the nurse got to experience it first hand. She felt because it smelled so foul it should be tested. That was sent yesterday late afternoon and we have yet to hear back on it. Ty woke up briefly this morning at 7am. I asked him if he was ready to eat and drink today and he whimperingly said no and went right back to sleep. The doctors haven't been in yet but I know the plan will be to turn off fluids and see if we can get him to drink and hold his own today. Last night the nurse told me to prepare myself for another night. I have a little feeling we'll be going home. Maybe that's more hope than anything but to me he seemed a little more perky last night.

-Tylers Mommy

Hanging At The Hospital

2011-03-04T14:49:00.003-05:00

We are staying another night. Just waiting for Tyler to be able to drink on his own. He did down an entire hot dog finally at around 2:00 :) but he had diarrhea soon after. At least he ate :). He hasn't touched a drop of drink. He also finally urinated today at the same time he went diarrhea the last time (he has gone 4 times today). He only went a little but at least he finally went.

So, we are just hanging out in the room. Tys is watching show after show. Right now it's Winnie the Pooh. The older ones from when I was a kid :). I'm glad I have my netbook so I can surf the net and write and stuff because I've been watching cartoons for days!

-Tylers Mommy

Update

2011-03-04T10:25:00.002-05:00

So Ty slept well last night but he has just been laying and watching TV. He has refused water, popsicles, grape juice, waffles, toast and bacon. He has had 3 bouts of diarrhea, one rather large one, one pretty small. From my view it doesn't look good for a discharge today. The doctors came in this morning before he woke and sounded positive he'd leave today as long as he ate and drank after fluids were stopped. Fluids haven't stopped yet. They went all night and now all morning and he also hasn't peed yet.

-Tylers Mommy

Admitted

2011-03-04T01:33:00.003-05:00

So the pediatrician ran Tys urine and his keystones were "large" (out of sm med and lg, lg being the worse) and his urine was concentrated. He gave us 2 hrs to drink 6 ounces of fluids. He hadn't by 5 (he did about half that) so we were sent to the ER. At the ER Tyler drank about an ounce of pedialyte. They gave him zofran and a huge dose of amoxacillin for an ear infection (3 times the dose, then a different antibiotic after that). They also gave him motrin cause for about 30 minute he was in severe pain from his ear, screaming, hollering and shouting mommy mommy mommy!

Then around 8pm, the meds had gone straight through him, he had NINE bouts of diarrhea from about 8pm - 12 midnight. They hadn't started an IV yet at that time. The doctors consulted and decided to put an IV in and admit him. They want to monitor his fluid input and output and once it's sufficient he can go home. We didn't get up into his room till about 1am. We just settled in and I'm finally eating my first meal since 1pm. Ty wanted some fries. He ate 3 and said that was enough, his belly hurt. Awww.

Ty isn't allowed to leave his room due to the nature of his illness. I'm thankful for my computer that daddy brought me when we learned we were being admitted and they will send in toys and movies tomorrow.

-Tylers Mommy

Heading to Pediatrician

2011-03-03T13:32:00.002-05:00

And quite possibly the ER. Ty just isn't getting enough fluids in and today he slept till 11:15am when I woke him up. He hasn't left his bed yet at 1:30pm. He drank a pediasure but went diarrhea in his pants. It hurt his belly but it did seem like it went down the best of everything yet. He wants more but it will just go through him. He won't let me move him to my room and he is just laying here. I think he needs fluids. The appointment is in an hour (at 2:30).

So the pediatrician will be able to evaluate him then call the ER so that HOPEFULLY we won't have to endure a long wait in there or any kind of tests. Just plug in the fluids so we can be on our way.

-Tylers Mommy

Sick

2011-02-28T10:07:00.002-05:00

Yesterday Tyler had a big temper tantrum and I ended up putting him to bed at 6pm. He woke up twice between 6-8 saying he was hungry but went right back to sleep. At midnight he woke up and said he was hungry again. I made him a sandwich. He ate two bites and said he was done. He then downed a cup of water, thankfully. He then told me his tummy hurt. He wanted me to rub it, so I did.

This morning he woke up and went potty. I asked him how his belly was. It was at that point that he sat in the hallway saying it hurt. I felt like he was saying it hurt for attention since he hadn't mentioned it hurting till I asked him. He told me he needed me to rub him. I said "well guess you can go to school and see all your friends". He didn't say anything. Daddy said "you don't want to see your friends?" as he too thought Ty might be faking. Ty said "right. I to sick". So I rubbed his belly for a couple minutes. He acted really really tired but that was it.

Then I got a phone call. His school was closing for morning session due to all the freezing rain and light snow. So I asked Ty if he wanted to get his bear and blanket and snuggle. He said yes. He went and got his bear. I said "you forgot your blanket" . He made it outside my room, came back doubled over and said "I can't mommy I to sick". He came back on the bed, looked green in the face. I said do you need to puke? He shook his head yes. I got him off the bed, he walked a step and then vomited all over my floor :(. After he was done he said he peed his pants. I said "is it poop?". He said no, it's pee. So I took his pants off and it was diarrhea. Poor kid vomited and went diarrhea at the same time.

I cleaned him up, put a diaper on him which he wasn't thrilled about but understood. Covered my bed in towels and got him a vomit bucket. He's laying in my bed. He then had another diarrhea episode so I cleaned that up again. My poor boy.

Now I'm off to bleach the floor in my bedroom...

-Tylers Mommy

Vacation and Car Shopping

2011-02-27T11:22:00.002-05:00

This vacation of Tylers is going OK. I kept him busy 3 days with play dates. We had one day just the 2 of us and the rest of the time we have spent car shopping. Just when we think daddy has decided on a car, he changes his mind. Which he has done so again. Today we are going out to test drive another car. I hope/think he'll make his final decision today.

Car shopping is rough on Tyler, as you can imagine it is no fun for most little ones. He does greatly enjoy sitting in the show room cars, playing/studying the doors and their locking mechanisms. He lost his precious bear in one of these show rooms. We will be searching for it today. On Thursday night we were out with a friend and Tyler was acting odd. Very down and out. The next day we went car shopping and he was acting the same. We called upon nana to watch him so we could continue. When we got home he felt warm to me and nana said she noticed too and that he didn't move from the couch. Took his temp and he had a fever of 100.7. He perked up towards evening, went to bed and woke up fine. Very odd.

Now it's Sunday and my patience has run very thin with him. I am totally ready for him to return to school tomorrow. His jealousy over the dog is getting pretty bad, his whining is piercing pain to my ears and his disobedience (hate that word) is getting pretty bad. He has also been super affectionate which has been so sweet and nice. Can't complain about that!

Well, it's off to test out more cars...

-Tylers Mommy

OT Evaluation

2011-02-23T20:38:00.004-05:00

Tyler hasn't been to private OT since October. Insurance required us to take a 2 month break, and then I was enjoying not going so much that I decided to just monitor him and see how he's doing. Well a few weeks ago (before we all got sick) I noticed he was having a hard time coloring/writing/drawing. He holds the utensil OK but it's the squeezing/pinching of the finger that are real weak. I noticed he did not have much endurance and would get frustrated so I felt it was time to give them a call. He had to do the evaluation process again.

He scored well for 3.5 years old and then his skills are scattered beyond that. He has some 4yo skills emerging. She feels there are multiple issues causing his delay. First off, I thought he was regressing. Well she doesn't think he is regressing, but she doesn't think he's progressing age appropriately. Meaning he hasn't had improvements. She said it's really hard to tell where the problem lies because he had so many other issues going on. He was shut down for the first half hour, and hardly spoke a word to her at all during the whole hour. He used his squeals to communicate. Often when she'd ask him to do something he'd go "hyper" or "impulsive". So if she asked him to draw a line, he'd take the utensil and scribble all over the page roughly.

So, she thinks the mix of problems is behavioral, inattentive, and some hypotonia going on. She had a hard time figuring out how much of the problem was hypotonia. She thinks a lot of his sensory and inattentive stuff might cause him to not use his fine motor skills enough to strengthen them/learn them/progress. She said she almost wants to call it "sensory motor delay".

Anyways, she says he's not "horrible". The core problem itself is on the mild side, it's the added issues of sensory, hyper, behavioral, inattentive that cause this to be a bigger issue. Tyler use to see her once a week for 45 minutes. She said this time she's recommending more of an intensive schedule, twice a week 45 minutes each. But when I went to book Ty, she didn't have much available. He can't see her at all next week. He got in for one appointment the following week and then two the week after that. He could get in a second session in 2 weeks but I'd have to pull him out of school. Well he gets therapies in school too so that didn't really make sense to me.

Anyways, that's where we are at. We still aren't meeting our 24 ounce goal. We are right around 18 ounces most days. It's so hard to push him to do it but we will keep pushing.

-Tylers Mommy

Winter Vacation

2011-02-22T00:02:00.003-05:00

Today was day 1 of winter vacation and it was great :)

We got to meet a great family with two children on the spectrum. The 3 kiddos got along great and Tyler had a wonderful time :) I got to talk autism out my eyeballs lol.

Did I mention that daddy got into a car accident last week? It wasn't his fault. He was rear ended by a full sized commercial van. The insurance adjuster was here today and he's pretty sure it will be deemed totaled. Thankfully my husband was not hurt. So we've been looking for a new car.

Anyways, nothing special planned this week. I'm hoping for great behavior from Tyler and lots of time together :).

We are averaging about 18 ounces of fluids a day. An improvement from his average :). But he still needs about 6 ounces more. We are also getting 1 pediasure in him a day. 1 more and he'll meet the 2 a day he needs AND meet the 24 ounces :). It's hard to get him to drink it though. The PCA is trying to push the fluids big time. She tries to sneak them in but he doesn't fall for it LOL. But I'm glad she's trying.

My biggest complaint is my darn head aches. I've been downing my migraine meds like candy. Every single day for the past 5 days I've had one. Today was the worse. I've never had one hurt like today. I'm wondering if it's sinus related triggering a migraine. They really do turn into migraine cause I get nauseous, dizzy and sensitive to light and sound just like my regular migraines.

OK well that's enough for tonight :)

-Tylers Mommy

He Needs To Drink

2011-02-17T15:28:00.005-05:00

So the doctors visit yesterday as a little scary. She said last week Tys urine ketones were 4+. That's the most severe they can be. Dehydrated and his body was literally starving. She said at that level the body starts eating its on muscle. She had Ty repeat the urine and she said it looked a little better (she didn't give me a number). She told me that Tyler needs to drink at least 24 ounces a day. She'd also like him to drink 2 pediasures a day for at least the next 2-3 months.

When Ty is healthy, he drinks about 12-16 ounces a day on average. He has always been this way. He is as picky a drinker as he is an eater. Maybe worse. So when he does get sick, he's already starting off borderline dehydrated. The body needs the vitamins and minerals you get from the things you drink. It actually does not sound all that big compared to what you get in food right? Well it's the fluids that also help you in absorbing the good stuff for your body.

I went to his school and had a little sit down meeting with the nurse and autism specialist. They are making up a chart for Tyler to track how much he drinks. They will be pushing him to drink 12-16 ounces a day just at school, including one pediasure. I am so thankful for this. If they are more successful with him at school than I am at home, I know he will get close to the amount he needs every day. And maybe they could help me out here at home. I know I will have to start a reward system for him here at home. And I think we'll add drinking water to our morning routine. I did this morning and got him to drink about an ounce :).

Yesterdays total fluid consumption was 12 ounces. It would have been only 6 if we didn't start the pediasure. Thankfully he likes the chocolate pediasure. I spent the day finding out if there was any way to get the pediasure covered because it costs $25 a week. Not as bad as his special formula from when he was failure to thrive, but it's still quite expensive. Well not only is WIC going to cover it until April, they are also going to cover 4 cans a day! I am just so thankful for that program. They have helped out so much.

Today Tys note home said they between the 2 classes, the autism specialist and feeding group, they were able to get in 12-15 ounces. That's spectacular! And then at home I got him to drink about 8 more ounces of juice (the juice he didn't drink at school). I'm so happy for him :) and he went to the bathroom as frequently as he's should!

Anyways, that's about all I have the energy to write right now. I was very sad about all this yesterday but with all the improvements today I feel tons better.

Oh, today was his last swim lesson for he session and they moved him up a level! It's the same class, doing the same thing, but it helps his ego cause he has been in pike now for 1.5 years and now he's in eel. He can't go to the eel only class yet until he can swim without a bubble for a few feet and be fully comfy with putting his face in the water, which is definitely is not.

-Tylers Mommy

Wheres Our Normal?

2011-02-15T22:08:00.002-05:00

I'm so ready for things to go back to our normal! My stomach has been very unhappy the past few days. This evening thankfully I feel the best I have since LAST Tuesday. Still real stuffy and coughing up my lungs but I am feeling better.

Today Tyler was just so messed up. I don't know what's going on with him. In addition to rolling his ankles, he began rolling his knees within the past month. Like, they buckle and he stumbles and cries and is in pain. Well now in the past few days he has been complaining of pain behind the knees. It appears to be more apparent on the left knee, but he complains of both.

This morning he had a neurology appointment. He will be doing a 24 hour EEG to rule out seizures (when he sleeps) at the end of March, but she didn't really address any other issues. But the day was just a mess. The moment Tys feet hit the ground he cried out in pain. He bent his knees and went straight up on tip toes, saying his knees hurt. He could kind of stand in place but couldn't get up on the toilet or off. I carried him out to the car to get to our appointment.

He was completely fine then as soon as I got him out of the car seat and his feet hit the ground, same exact problem. I had to carry him into the hospital and grab a wheel chair cause he refused to walk at all. People asked why he was in a wheel chair, all I could say was "he's stubborn". Is that the case?

Anyways we get through the appointment and I wheel him out to the car. Then I drive him to school, set him on the ground from the car and again he is in pain. I carry him into the school, try to put him down and he cries in "pain". The nurse looks at him. Tells him he can't stay if he can't walk. The teachers can't carry him around. She manipulated his legs and got him to stand. He walked downstairs to the cafeteria whimpering in "pain" a little.

We get down there and he's all clingy to me. His teacher comments that he looks real pale. Then I notice he feels a little warm. Well I left him anyways. I go home and 1.5 hours later get a call that he has a little fever. 100 degrees. Have to go get him. I pick him up, bring him home and he tries out the indoor swing we got him. He swings on it for about a half hour, but is irritated the whole time. The comes over to me and lays on me for 3 hours straight. I was getting temperatures from 94 - 100.6. He'd be cold then super duper hot crying about how hot he was and trying to pull his clothes off. By about 7:30 he was on the ground manipulating some play doh toys.

He went to bed nice. So after I heard he had a little fever I decided to call the ped and tell them what has been going on, asking if they thought a close look at him would be in order. They agreed and we are going in tomorrow morning. Part of me is thinking this is ridiculous, most of this is him being dramatic. I mean the school told me he did play in the gym for awhile. He complained of his knees only one time after he got home from school. And, could his weakened pincer type grasp have anything to do with this? Could it have anything to do with him not eating or drinking well yet?

Yes, that's right, he's still not eating or drinking right. I am still more worried about his drinking. Today he drank 2 ounces of milk. Unless he downed a butt load of water in the 1.5 hours of school he had, then that's all he got today. I was with him at lunch and he didn't touch his drink (or food). He did eat a hot dog and a slice of pizza today (yeah, I know, not great. But we were out when we grabbed the piece of pizza and I have to desperately go grocery shopping. I wanted to go today but I felt terribly ill all day). He also did have 1 scoop of ice cream today.

Yesterday I have no idea if he ate breakfast or lunch at school, but for dinner he had 10 croutons and maybe 1 bite of pasta. Could he be deficient in vitamins and minerals? Could that be why he's so pale, feverish and has body pain?

Maybe it's just continued flu symptoms?

I don't know. I partially feel like a doctors appointment is not needed, but it won't hurt either. Put my mind at ease right!

What am I gonna do with this crazy boy???

-Tylers Mommy

The Flu - Still

2011-02-14T00:58:00.003-05:00

Well, we are still dealing with the flu here. Tyler turned into his croupy cough and by Wednesday, mommy was/is sick.

I had to call in reinforcements because I could NOT take care of my sick child and myself, by myself (no, daddy is NOT helpful). So, in comes Nana. Today is Sunday and she is still here...to give you an idea. Another clue how bad this one is? I was about to write Tys whole story with the flu again, completely forgetting that I had already shared it all. Yeah, this one has put me in a daze, barely coherent.

Interestingly, I followed a very similar route as Tyler, minus the dehydration and blood work/IV. Tylers fever was gone, I thought, by the time I was sick Wednesday, but then it popped up again Thursday with the croupy cough. (I so may not have the exact days right). Anyways I went down. I was dealing with 102.5 fevers, body aches, chills. Oh I was sooo cold. And when medication brought the fever down, I was soaking through my clothes in sweat. Seriously. Yeah, I know it's gross, but yeah. And it pretty much went straight for my lungs. By the following day I was already calling for prednisone. I was so glad to hear she wouldn't require to see me to take it. But Friday I ended up going in anyways because it hurt so much to breath.

My lung function was down 25% but my lungs themselves didn't SOUND to bad, so we decided to hold off on xrays till Monday. I continued nebulizer treatments every 4 hours, but added 10-15 minute saline treatments through the nebulizer in between. Those helped a LOT and by the 3rd treatment I felt like an elephant was lifted off my chest.

Saturday I thought my fever had gone but by late afternoon it had returned. I downed some more NyQuil and slept for 3 hours. At 7:30pm I woke, but only because I found myself bathing in NyQuil. This was my second bottle of NyQuil for this flu and I had only taken 1-2 doses of it. Well I did not put the lid on all the way and it was ALL over me, my bed, my bedding. Bright sticky green.

This flu has me so weak I could barely walk up and down the stairs, let alone to the bathroom. When I was at the doctor, they took my heart rate and just from walking to the room it was at 153.

Anyways, today I turned the corner. I'm still dealing with nasty mucus coming from my lungs and constantly blowing my nose and sinus headaches but I'm pretty certain my fever is COMPLETELY gone as are my body aches and chills and sweats. I have a lot more strength now and do not avoid going downstairs. I spent most of today upright instead of flat on my back. The cough is horrible and painful and now the fight begins to prevent pneumonia/bronchitis.

Tomorrow Tyler returns to school. Nana is heading home tomorrow but is going to help me out in the morning to get Ty off on the bus since I am still quite weak. He is well enough to go back but his wet cough is still pretty bad. He is on prednisolone himself. So, hopefully the school will give him nebulizer treatments if he needs it. They hate giving him them because he fights them ....they also don't believe that bad coughing = asthma problems. They are so stuck on only looking for a wheeze...and according to them he gets super hyper after. I don't ever see that at home. I think she just doesn't see him unless he's sick and realizes that he's just naturally hyper LOL.

Anyways, I'm hoping Nana and daddy and my brother do not get this. Because it has lasted me 5 days so far, and Tyler just finished up day 8 (though he hasn't been horribly ill for the past 2-3 days but he's still yucky). I can't imagine another 1-2 weeks of it IN MY HOUSE!

-Tylers Mommy

Flu

2011-02-08T15:50:00.003-05:00

Saturday night Ty was urinating an awful lot and at one point cried out in pain "my peepee hurts! It only hurts if I don't pee". The following morning he woke up and just wanted to lay around. Nana was here and he hung out with her while mommy got 2 more hours of sleep. Then I heard Ty sitting at my door. I called him in and be poutedly said "mommy I want you". He climbed into bed with me. I rubbed his head and found the fever. I was told he hadn't drank anything all morning and he continued on like that all day. He was still peeing frequently so his ped set up a urine analysis, urine culture and blood work. All looked close to normal. White cells slightly off. By evening he was having higher fevers. He was able to sleep from 1am-3am after both motrin and Tylenol. But he woke just 2 hours later shivering/chills and moaning and a 103 fever despite meds. He looked AWFUL.

I waited an hour trying to get him to drink and deciding whether an ER trip was needed. After no luck and a fever now up to 104 I knew he really needed fluids. So on we went. Got there at 4:30am. They got him to eat three Popsicles but he wouldn't drink anything. Around 7am they decided to test his urine and it showed dehydration. IV was started. We were able to get out of there around 10am.

We went home and I had something to eat. I called the ped to schedule our followup and they wanted to see him same day. This meant no sleep. Ty and I slept 1 hour. We went to ped and got home around 3:30. We settled down and I slept from 5:30-9 and Ty slept till 10 (I had to give Ty melatonin though). Around 10pm daddy went out and got Tys favorite Friendlys meal and chocolate milk. Ty refused it. He did eat a Popsicle. At midnight I was able to get down 2tsp of water via syringe. We went to sleep. We both slept till 9am. Ty woke up a couple times moaning. When we woke up his fever was down to 102. I tried to get him to drink. No go.

He ate 1/2 waffle this morning. I put peanut butter on it to try and make him drink. It resulted in one sip. By 11am he still hadn't drank and hadn't peed but once since the ER around 10pm Monday night. The good news was that his temp fell down to 101 without meds. So I called ped and they wanted to test his urine.

I took him down and his urine tested borderline. So no IV yet. I have since gotten him to drink 4 sips of water (it is now 4pm). Thankfully his temp has been wavering between 100.4 and 101. I think we are over the worse of it. He just needs to drink!

-Tylers Mommy

Hyper Mall Adventures

2011-02-04T23:55:00.004-05:00

Today I headed to the mall for several reasons, with Tyler in tow.

First was to look at booster seats. No, I am not going to put him in one but I heard there was a great sale. I was thinking within a years time I'd start training him and if I could get THIS good of a deal on it maybe I should go for it. Well he sat in it and I didn't like it. He just didn't seem ready.

Then it was time to find new pants. He's moving into 5T jeans. I can't believe how expensive little kids clothes can be! I found one pair of 5T jeans on sale for $9.09 so I snatched those up. I looked in the boys department (at Target) for size 5 and didn't find any with an adjustable waist band for my skinny boy. Ah well, one pair will have to do for now.

Anyways, during our whole mall experience, little man was a crazy hyper boy. Hop skip and jumping around. Not listening, running away from me, being loud and rude to people. Threats of time outs were made, raising of voices occurred and maybe a little hair was pulled out. At one point, his knee gave out. He cried out in pain and grabbed it. He whimpered for a minute or two and then was OK. Why are his ankles giving out and now his knees??

Tyler started drinking these nutrition shakes last week. I have noticed a dramatic decrease in his activity level and he is now demonstrating some ability to entertain himself independently. I am not totally sure this is not a coincidence but he did not have his shake today and he was off the wall.

Once his head hit his pillow, he zonked out. No melatonin needed!

We are due for yet another snow fall tomorrow. The last snow fall, a 2-day event, dropped 10-12" the first day and 9.5" (I measured) the second day. There was a LOT of snow and we have no where to put it. DPW has been working on snow removal ever since, carrying it off in dump trucks. Now we are suppose to get a couple inches tomorrow, then several inches in the beginning of next week, and then there is rumors of a significant storm due to arrive around Thursday. We do get snow here and usually 1-2 good accumulations every year. But prior to the last snow fall (the 2 day event) we were already 1 ft over our average snow fall for the YEAR. Now we are almost 3ft over and there is more to come. When this snow starts to melt, we will be dealing with some major flooding that could do some damage. Our basement floods so I assume we will have a little lake down there.

-Tylers Mommy

He Amazes Me

2011-02-01T01:10:00.003-05:00

While I was running errands at my local college, I picked up some pre-k workbooks for Tyler at the book store.

Tonight, going past his bed time, we worked on some pages together. I am started to get quite concerned over his fine motor skills. He had trouble drawing a line to follow a simple maze as well as trouble circling objects. I'm considering calling our OT as we've definitely passed the 2 month mark for insurance requirements, to get back on track. His scissor skills are improving thankfully but his pre-writing fine motor skills are starting to worry me.

He did blow me away though. The first few pages seemed to be at his age level. Then one page asked what does picture 1 go with and it shows 3 other pictures near it. The first was hard for him. Picture 1 was a bee. Then there was a boy, a flower and some other object. He didn't get that it went with the flower. Picture two was a bird and there was a nest, a dog and something else. He got it right :) Picture 3 was a pair of pants and then a boy, a shirt and a window...or something like that. And he chose the shirt :) That blew me away that he figured that out. Then he had to figure out which was different. He couldn't on the first one, but that was harder. But he did it on the second two pictures.

The page that surprised me the most was letters. I showed an apple. A is for apple. Then next to it it had two pictures. Grapes and an alligator. He had to circle the object that sounded like aaaaapple. He got it right! He struggled with B and C but understood, did well with D. That BLEW ME AWAY!!! He has got to be doing some of this stuff in school!

What's that? Oh....yeah....I'm pretty much in the dark with the things he does in school. I don't weekly or monthly notices for his integration class (his pre-academic class). I intend to write to them though requesting they keep me in the loop with what the class is doing and how he is doing with it.

-Tylers Mommy

Cold with Cold

2011-01-24T21:50:00.002-05:00

It has been very cold the past few days. The temps over night have been in the negative and they struggle to come out of the single digits during the day. It is currently, at 10pm, -7F out with a "feels like" of -17. Last night was bitter cold. It got to -20F with a windchill of -25 to -30. There were warnings for frostbite.

I was wondering if they'd close school. I know that there are plenty of places on this earth whom see temperatures like this and well, kids have to go to school. But in January, we are usually in the teens, some single digits. In February we get a lot of single digit temps and some negatives but the wind chill is rarely bad. Our neighboring town 5 minutes away did end up closing.

Tyler was home anyways as he has a cold with a little fever. He may go back tomorrow depending on how he feels in the morning. Hopefully it doesn't amount to anything. This kid went 2 full months without being sick! He had the flu during Thanksgiving and then a couple weeks later a sinus infection as a result, but other than that he ha been great! It has been wonderful :). So this little cold is no big deal at this point :).

He worked on a puzzle tonight. It's a 48 piece Dr. Seuss puzzle. The pieces are huge, like 3-4 inches in width and length. He struggles so much with jigsaw though. You have to help him with every single piece. Not just weather it's an edge piece or an inside piece, but with the matching too. He doesn't get, feet go on bottom, head on top, the green side does not match with the red part here, etc. He tried so hard though and never gave up. About an hour later, with help on every single piece, he did complete it :).

His weighted vest came in the mail today. We gave up on the school getting him one. He has worn it ALL day. He LOVES it. I forced him to take a nap today since he's sick (with lots of tears but once he laid down he went fast asleep!) and he slept with it! He's not suppose to wear it like this. But I don't want him to dislike it because I don't let him wear it know what I mean? I'm hoping the newness will wear off over the week.

-Tylers Mommy

3 Day Weekend

2011-01-21T15:54:00.003-05:00

Well, it's another snow day, so another 3 day weekend. Tomorrow our local YMCA has parents night out. I think I will take advantage of that for my sanity!

Tyler has a birthday party to go to on Sunday. His second invitation! He loved the process of picking out a present. Which reminds me, I need to get a card and wrapping paper. I don't have any girly wrapping paper! This is our first girl party :).

Despite a snow day, Ty has been pretty bearable today :). We played outside in the snow. He loves the snow. He has been pretty mellow today. Unheard of! But very nice. He is currently watching some show on PBS while sitting on my lap. He hasn't watched TV in weeks aside from a movie here and there with me. It's nice to have the quiet and calm.

This weekend it is suppose to be very cold. Temps going below zero in the evening hours, and they say highs in the mid teens if we are lucky. Think I'll be wearing my thermals!

Oh yeah. Today Tyler was writing on a piece of paper. He drew the letter H, I and A!!!!! The H was luck but the other 2 he did :) I"m so proud. Then to top it off, he drew a rainbow! I am just so impressed.

-Tylers Mommy

Snow Days

2011-01-19T12:49:00.004-05:00

I remember as a child that I absolutely loved snow days, as most kids do hehe. But now as a parent, I pretty much dread them. One is OK every now and then, but we've had one last week and one this week. And this week was a long weekend on top of that.

It's to cold to spend much time outside so my hyper boy is climbing the walls in here. Not today, he went off to school today! He could have had a 2 hr delay but his school is the only one that did not have a delay :). But for the past 4 days he has been going nuts.

He has decided that he would like to wear his leg braces. Every single day. Waking and sleeping. Now, this doesn't really bother me, except he wears them without shoes....because he LOVES the tap on the floor!! He walks around the house like usual. This kid does not sit for any length of time. So he walks from the living room to the kitchen, back and forth, back and forth, seriously ALL DAY LONG. And what do I hear with these braces on? Tap tap tap tap tap. Running tap, walking tap, jumping tap. Yes, I can distinguish between them! I about had it at one point and told him to NOT tap in the living room. What does he do? He goes upstairs, right above the living room, and walks around as HARD AS HE CAN. So I hear tap tap tap tap tap over my head for an hour.

And can I tell you how much it hurts to get stomped on with those things? He stomped on my bare feet several times and ooooooh it had me yelling.

In addition to the tapping, he is climbing on me, daddy and uncle T, he is screaming, screeching and growling, he is climbing, falling and whining. Tantrums because I won't let him outside in the hail. He isn't eating much and has lost 2lbs, though I did get him to eat a full dinner last night. And he is acting super sensitive to sounds. He hates it when I use the blender, and I use it several times a day. When I turn on the blender, he covers his ears, runs in a circle and screeches. He hates the sound of my shark steam cleaner, and if he thinks you are going to turn the volume up on the TV his face crumbles, he covers his ears, cries and BEGS us not to. On top of that he has been into LICKING THE WALLS!!! It's driving me nuts and it is SO GROSS. I think he's going through some kind of sensory phase/issue or something.

But, I DID enjoy some great moments with him, during his 4 days home. I learned that he knows the letter sounds of A, B, G kind of, M, and a few others that I can't remember right now. We watched the Sandlot together. He was actually very into it till the last half hour. We cooked many times together, including rice crispy treats. 6 months ago he would have NEVER eaten them. I'd try to get him to but he hated them. But now he will, because he made them :). I did take him outside yesterday while I shoveled and he was so so so so happy to play in the snow. He had this one area up on a pile near a fence. He'd get mad if I put snow up there, then realized that there were clumps of snow in my shovel, which he called "snow balls". He was building a pile and didn't want me to cover it but then he saw the snow balls in my shovel and would unload them onto his pile. Just like inside, he piles and hoards his toys, he did so with snowballs too. It's cute. When he had to go in he was so worried about his snow balls. Last night before bed he asked me if they would be there in the morning. This morning he checked on them and did his happy dance that they were still there.

Every time I ask him to try a food on his plate, he does! Yesterday I got him to try corn! He does what he does in feeding group....smells it, licks it, puts one in his mouth and chews it and really tests and tastes it. Then announces "no, I don't love it" (for him love = like). That's OK I'm thrilled he tried it :). Again, a year ago, he would have never done such a thing :) He really is growing and thriving.

I measured him last week. He's at 43 1/4 inches! He's on the last harness slots of 2 of his car seats (the maestro and the nautilus). I need another frontier but I'm not sure if we can swing it since I pretty much stole the one we have due to a website error (that the company said they'd honor!). So I'm not sure what we are going to do. He is sure to have outgrown them by summer.

Anyways, he's back to school today and both he and I are thrilled for that. He shall be returning in 2 hours. I took a nap and didn't do much today but relax :). My house needs to be cleaned up though so that's what I am off to do next.

-Tylers Mommy

Peachy

2011-01-10T20:34:00.002-05:00

Tylers return to school has come with the return of quiet time, a smiling, regulated boy, and a much more patient mommy. Today was wonderful :) The PCA was gone all last week too but was here today when Ty got home, so that was helpful too.

Tyler has been into making cards for us. It's so sweet and he puts so much effort into it. I promised him I'd get him some more art supplies. He has shown everyone since Saturday that he is out of glue. He shows everyone where the green part of the glue stick is, indicating the glue is gone. The PCA came in, he made another card (for me.....aww) and then remembered his glue....so he ran upstairs, grabbed it and brought it back down to show her the green.

He has also been paying close attention to the stories I am reading him at bed time. He's not ready to try and tell me what happens next. I have to read the same book several days in a row to even try it.

My poor boy had his second over night pee accident ever. He was officially potty trained this past September. A week later I let him sleep with just undies. He had one accident his first week in undies (or was it the second?). Actually, it was one accident in the day, and one at night. And then 3 nights ago, his second one. I have restricted him to no water at bed time (he loves to guzzle some down at bed time, as it delays laying down for sleep). He told me he cried because he had a bad dream, then cried that he had to pee but I didn't hear him. I told him, once again, if he has to pee at night, he can get up and go, he doesn't have to as mommy. He remembered, but he still doesn't do it.

I have to remember to schedule a dental visit. He has only had one in his life. I know...I'm not on top of it. But he really should go in. He's so proud when he brushes his teeth. He stands on the toilet, opens the cabinet so the mirror faces him and he brushes. Then he jumps down (after mommy touches up), runs to the mirror in the hallway and admires his work. He's just so cute.

Anyways, I really should honor my promise of buying his art supplies tomorrow. Lets hope I remember!

-Tylers Mommy

Riding, Play Skills, Back To School

2011-01-05T22:09:00.003-05:00

Today in therapy with V, we talked about horse back riding. Apparently she has heard that our insurance company has been approving kids on the spectrum for riding. I think I will look into it. Ty has been on a horse a handful of times and each time he has absolutely loved it and just seems so much more calm and at peace.

We talked about his play/imaginative skills today. I was told that play/imaginary skills play a big part in a childs development. It is what helps develop abstract thinking and adult relationships. So we are trying so hard to bring out imagination that he almost entirely lacks.

Tyler returned to school Monday and with it he has returned to lip chewing. It was really bad yesterday but thankfully today I hardly saw it. It takes our kids, and well, any child, some time to adjust to returning to school after a break. He had a 7 day school vacation which is 11 days straight without school. He has no school tomorrow for 3 kings day/development day. This can be quite confusing for kids. He just came off from an 11 day break, went to school for 3 days, has another day off, goes to school for 1 day, then has 2 days off for the weekend. For a child that does not understand days of the week, the fact that he goes M-F and then gets 2 days off etc., school just seems random and sporadic.

-Tylers Mommy

More Than Tolerable

2011-01-02T12:41:00.002-05:00

The past few days have been so much better. I had the PCA come use a lot of her hours which gave me a break. We were also able to get a lot done.

I used my new floor steam cleaner, the shark, and they haven't looked this clean in a very long time :). Ty isn't fond of the sound it makes. It's not loud, he just doesn't like it. I took the Christmas tree down and all the decorations. It's bittersweet. So sad to see Christmas go, glad to get my livingroom back.

We've dealt with leaks this season. First our upstairs toilet, then the dishwasher which completely distroyed out floating floor in the kitchen, then the sink upstairs. The downstairs toilet has been broken for a year now. Daddy fixed everything :). And we have a new toilet downstairs.

Last night my cars check engine light came on. First issue since we got it in June. Really hope it's cheap and easy to fix.

So I've had more patience for Tyler with the extra help. Last night was tough trying to make dinner as he was in full blown ADHD and ASD mode. Phew! After he hit me I kicked him out of the kitchen. But that was probably the most severe moment in 3 days :). I'm hopeful today will go well too as it is his last day of vacation.

-Tylers Mommy

Vacation Day 5

2010-12-27T19:48:00.004-05:00

We made it through Christmas OK. Just a very hyper, excited boy with some impulsiveness. But the past 2 days have been tough.

I had lots of help yesterday and most of today but as of this evening I have been left alone with the monster boy. The past 2 days he has been extremely clingy. I can't do ANYTHING. Even trying to take a shower or watch television is pointless. If I try to shower, he sits on the outside of the door banging/knocking yelling mommy and saying all these random things, most of which I can't hear. I mean, he's not having a fit out there, he's not tantruming that I'm in the bathroom without him, but he needs to have contact with me 100% of the time. If I try to eat something, it takes attention away from him and he's in my lap and pulling on me. If I'm at the PC, he's in my lap. He's spilling every single drink and falling constantly. His socks are filthy and are not slip resistant and he REFUSES to change them. He's going on wearing them a week now. He fell twice yesterday, once right on his head, and once today from the socks. Today he also fell trying to climb/stand on his chair and hit his head. He spilled his water at dinner.

He talks just to talk "mommy I got a drop of water on my shirt. Mommy I got spaghetti on the table. Mommy Spock just came in the room. Mommy I'm hungry".

Speaking of hungry. He has been complaining constantly that he's hungry but when I make him something he isn't eating it. It all ends up in the trash. Today I made him pancakes for breakfast and he took 1 bite. This afternoon I made him chicken and gave him some leftovers, not one bite. This evening I made him pasta he ate 2 twirled spoon fulls.

Christmas dinner, he ate ONE broccoli head. That's it. He did eat some pancakes that morning though. I'm not really complaining that he's not eating. He kinda goes through a cycle. But I hate the food waste.

I hear "mommy. Mommy. Mommy I can.... MOmmy can I? Mommy I want...." ALL FREAKING DAY. He hit grandma for no reason, hit daddy for no reason, shot uncle T with one of his xmass presents and got in big trouble for that. He can't focus on one toy and doesn't play with them. He pulls them out and either organizes them or puts them in piles, which keeps him busy for like 5 minutes then it's back to mommy mommy mommy. Yesterday he had one pile on the floor and one pile on the couch. Him and his piles. Seriously.

Don't get me wrong, I know 4 year olds do not hold a ton of independence but he should have SOME. For my sanity! And it's not like I'm not giving him attention. Today I played chutes and ladders with him, memory with him, don't break the ice with him, I sat down with him and built stuff with his lego duplos he got for xmass. Did he help me? No. Did he play with what I made? NOT AT ALL. I took him outside in the snow, I sat and watched 2 30 minute Christmas shows with him. I pulled out his remote control cars. He likes to sit in a different room with the remote and listen to the car moving in the next room. That of course lasts all of 5 minutes. He has broken several of his Christmas toys already.

Think of a young toddler, 1.5 years old....the attachment they have to their mommy. This is Tyler at 4. His daddy is here too but Tyler is attached to me. Add on ASD issues. Yeah, he can manipulate his toys, but he can't actually play with them. One toy is a hit. There is no imagination involved. He can screw screws into a board and unscrew them. He did that for about an hour straight last night with his uncle. But he won't do it on his own. You have to sit with him....he has to sit in your lap. He demands your attention 100% of the time.

I know many people that may read this will NOT understand. You can think you do, but you don't. To you maybe I sound like I don't appreciate my child. Maybe to you I'm complaining about being a mom, something I CHOSE to do. At this age I expect to have some of my own thoughts back. I thought I could urinate without a child trying to SIT ON MY LAP while I do so. I thought my 4 year old could drink out of a cup without spilling it several times a day. He still needs a sippy cup. I try not to give it to him and he hasn't used one in a month but I'm so sick of cleaning up a spill at EVERY meal. I'm sick of not being able to talk on the phone to my mom unless he is either a) in bed or b) literally locked out of my room. I'm sick of my house being so incredibly loud that when people call our home they can't hear me talk so they don't call anymore. I'd like to take a shower without having to listen to a bang on the door every 5 minutes and a little voice whining "moooooommmy".

It has been 5 days so far of him home straight. A weekend is OK. It gets tough by Sunday afternoon but knowing Monday is coming, I can deal. But, I still have 6 more days.

We will probably head to my moms house tomorrow. I plan on staying 1-2 nights there. That will help big time. She has said time and time again, she has NO IDEA how I get through each day with him. She says she'd love to have him over the weekend but she just can't handle him by herself. She says he is just way to much for her. Not that Ty would let me leave him with her....or anyone.....anyways.

So, yeah. Day 5. Thank God for bedtimes!

-Tylers Mommy

Survived Day 1

2010-12-24T10:55:00.002-05:00

I survived day 1 of Tylers vacation yesterday. I know, this must sound so awful. But seriously, walk a mile.

On Wednesday I went and picked my boy up from school because he had psychotherapy. He didn't miss any school but if I had waited for the bus to drop him off we wouldn't make it. I THOUGHT Thursday was the last day before vacation, not Wednesday, so I didn't send in the teacher cards/gifts. I feel awful :(. Ty had a really good session, and I learned a lot but I don't want to share that in this post.

We went home and after dinner Tyler put on his iron man mask and his iron man "glove" (it's a glove that shoots rockets). He went up to the dog and iron man punched him right in the head. My poor 11 lb dog yelped and fell over. Yeah, he lost that toy for the rest of the day and was warned that if he EVER did that again, that toy was going in the trash. It was 100% impulsive, he did not even hesitate or think about it. I was talking to my brother about it and my brother said "I would have also smacked his butt and sent him to his room for an HOUR". I'm like seriously, another person trying to tell me I just need to beat my kid. I told him "yes, he needs to be disciplined for it, but there is a difference here. He had no control over himself for doing it. It was 100% impulsive and as his mother that breaks my heart". He kinda got it.

Then yesterday daddy was taking a shower. Ty had to use the potty so daddy unlocked the door. When Tyler was done he left the bathroom door open. He came to me and I said "I have to go now too" and started walking towards the bathroom. He flew by me, reached around and turned the lock and closed the door. WTH!??!! He glared at me. I don't know why he did this. It was pure mean-ness. What the heck is up with him????

For the first time I pulled the Santa card. It annoys me when people do this. I'm not judging or anything but it does annoy me I don't know why. I don't like threatening him with Santa. But I did!!! I told him that Santa does not bring presents to children that are mean, rude and don't listen to their parents. I told him because he did that to mommy, Santa might have taken away one of his gifts. He was very concerned. So I said "but if you are a VERY good boy for the rest of the day, help mommy out, do a good job when we got shopping etc., I bet Santa would be proud of you and maybe he won't take away one of the toys". He was an angel (well, with the need for a couple reminders, but still).

We'll see how today goes.

Merry Christmas Eve to everyone! Today is a very busy day here for us. I have to clean up the house, do some dinner prepping for tomorrow, I have to sing at church (I'm in the choir) for 2 different services and the services are about 2 hours each, plus my sister in law invited us over to her in-laws for their Christmas Eve party tonight. I have 3 more gifts to wrap as well and I need to do bed time with Ty and put put cookies out with him. I don't know how it will all get done. Magic!!!!!!

-Tylers Mommy

And The Beat Goes On

2010-12-21T21:36:00.002-05:00

We continue to see these less than desirable behaviors from Mr. T. He is having several time outs a day in school and at home.

Yesterday his afternoon teacher did not have time to write in his log so she emailed me that Tyler threw sand in a friends face and that he purposely stepped on another child whom was laying on the floor. Today he had time outs for saying no/talking back to the teachers. That's what he's doing here at home. What's going on with him? I hope this is another one of his phases.

I don't know how much of this I will be able to handle over winter break. It's going to be a long 10 days!

-Tylers Mommy