Still Here!!

I know.  I am not writing much lately.  I may return to writing again as my days have calmed down and actually become semi-boring.

First, I'd like to recommend a book.

"I Wish I Were Engulfed in Flames".  By Jeni Decker

The book is HILARIOUS!  You should know that it is about her two sons, both on the autism spectrum.  But her writing is REAL.  Seriously, some days can be SO BAD that all you can do is laugh.  And there are times you say and think such awful things.  The stories are so real and I know MANY....if not all...families with children on the spectrum can relate.  She has a child on the higher end and lower end of the spectrum.  I have not finished the book thus yet.  It is actually great to have when your in a waiting room bored out of your mind or when your down and out and having a bad "autism day".  You are not alone!


An update on Tyler:

Health wise;

Tyler has been fairing well.  He has had a string of colds over the past 2 months that has put him on prednisone twice.  THANKFULLY my fast acting mommy radar went into action at the first signs of danger and BOTH times he turned around really fast.  This last time was the worse and his lungs didn't sound great and his breathing tests looked awful.  But on day 2 of his constant cough I decided to take him in instead of wait till Friday like I usually do.  24 hours of steroids later and he was TONS better.  Yay!  Silly boy does seem to be having some allergy symptoms though of itchy eyes and runny nose.  And occasionally post nasal drip. 

Autism - wise:

We are kind of in a back and forth right now.  For a few weeks straight he was actually doing REALLY well but we are currently experiencing an increase in violence and defiance.  We'll get through it.  He is starting to become unusually scared of bugs.  Like to the point where at one time we were crossing the road at the grocery store, Tyler holding on to the cart, and right in the middle of the road, a beetle lands on the cart.  Tyler SCREAMS and runs off.  And of course when there are several cars around.  I had to abandon everything and catch him.  We are going to try and educate him on bugs, hoping it will cut the fear down :). 

His imaginary play is coming along SO well!!!  He is coming up with things all the time :).  We can't always understand what he's saying.  Often times they are real words that don't outwardly make sense to us.  Sometimes it is a bunch of made up words.  Sometimes the whole "scene" makes 100% sense.  We are so so so so happy that he is doing this. One of the most painful things as a mother is to watch your childs play and see how unusual and "different" it is.  You want to sit there and smile as you see his imagination take off.  So when there is zero imagination and all he is doing is running a golf ball along a door, it can really hurt your heart.  Sure, you can adjust your mind and smile at that, because it IS making him happy.  He IS content to do such things and his happiness is above all of most importance.  But c'mon.  I'm a mom.  Reality is that it DOES hurt.  Case in point:




But don't let that fool you.  Tyler IS easily redirected when he "gets like this" and it does not interfere with any life skills.  It's just something that he enjoys.  My guess is it provides sensory input.  He has even told me he likes the way it sounds :).




Tyler School Wise:

Tyler is doing well in school!  His reading is "OK".  He is a smidgen behind at this point.  They have put him in an intervention reading program because as he gets older, reading comprehension is likely to be a big challenge for him.  The program is pretty awesome and I am so glad that the school he is in identifies our spectrum kids as having difficulties in these areas and taking upon the task of CHANGING THE WAY THEY TEACH so that our kids can learn :). 

Tylers 3-year re-evals for his IEP happened this year.  His IEP meeting is June 5th.  I have been a nervous wreck about it since the end of April.  His OT evaluation actually came out pretty good.  His weaknesses are more in the sensory area and some visual tracking issues.  The eval is recommending that in the coming year they continue to work on tracking with his eyes (he has difficulty catching a ball), and some sensory therapy.  The problem lies in whether the school will determine if that is "enough" to keep him in OT.  He is doing well with his fine motor skills, but he takes longer than his typical peers to finish assignments that involve writing or the use of his fine motor skills.  So even though he can do it, it takes him more time.  The OT is recommending that even though he TESTED as yes he can hold a pencil correctly, can draw lines and shapes and write some letters, that he takes a lot more time than he should to do it and therefor should continue getting services.

His autism evaluation was a little nerve wracking too.  His teacher scored him only a few points UNDER the autism "line" for her questionnaire.  I spoke with the spec ed teacher about it.  I did agree with a LOT of how his teacher scored him, but there were a few that seemed off to me.  Such as no repetitive movements.  My son is a tip toe walker and hand posturer.  The spec ed teacher said yes I see that too.  Maybe his teacher thought she was scoring on whether or not it affects his ability to access the curriculum (which this test is not intended for).  She also scored him as that he plays appropriately with peers.  But she also scored him as having more difficulty then most with sharing, turn taking, game playing and conversational skills.  Contradicts each other!  There were 1-2 more questions that were off.  I agreed with about 80% of how she scored him but those few that I disagreed with (as well as the spec ed teacher), he would have scored several points into the autism range.  Why does this mean something?  Well, the autism specialist has to use that assessment as part of Tylers evaluation.  Despite the scores, he IS recommending Tyler stay in the autism program at the school.  He says Tyler still needs the behavioral plan, still needs social skills training, academic support etc.  He is basically recommending that his program stay exactly the same.  It is WORKING for Tyler.  He told me that he foresees Tylers need for a para diminishing, likely before middle school and he foresees Tyler not needing an IEP by high school.  All very cool things. 

But that test, it is ONE questionnaire that his head teacher (a typical kinder teacher) fills out.  There was no eval done by the autism specialist.  He doesn't really need to do one anyways because he knows Tyler.  But we don't know how much weight the school will put on it vs. what the autism specialist says.  We ALL know it takes way more than a quick questionnaire to determine the needs of a child.  In meeting with the specialist, he assured me that it's only a small piece of their evaluation and he will need to remain in the program.  Mama bear is of course frightened.  I know he needs to stay in the program.  But I also know that despite what the autism specialist says, schools DO tend to put a lot more weight on test scores than on specialist recommendations.  Not always.  But often.  So.  We will find out in about a week. 

So, those of you who do not have a SN child may be asking why I am fearful of a test that has shown an improved outcome.  One that rates him just slightly off the educational autism line.  Well 1) the test is not accurate and if it had been done 100% accurately he would have scored into the autism range for the school.  2) I see the great improvements Tyler has made.  Leaps and bounds.  It is so awesome to see this as a parent. ......but..... 3) Despite those leaps and bounds, we have lived a life of intervention.  Period.  We know that his progress has a lot to do with his intervention.  We want to see our kids move forward, not backwards.  So the FEAR of him regressing due to a decrease in services that your parental instinct says your child still needs, can eat you up and tare you apart. 

So.... the fear is not INTENDED to overpower the positives.  We have to work hard at putting more of our emotions into the positives rather than the negatives.  Why?  Because sometimes the positives will disappear and it is heart breaking to see it happen.  We want our children to continue in a constant steady forward/upward movement.  A zig zag pattern of ups and downs is torturous and stressful, and also very hard on a child.  A continuous climb upwards is what we want.  He is getting that right now BECAUSE of the program he is in.  Take that away and he WILL experience that zig zag on a line graph.....or worse, a constant downward slope.  The idea of ONE QUESTIONNAIRE, a mere 2 pages long, taking away his upward slow and steady travel is frightening.  I know his team at school sees this.  I know they TELL ME and put it in writing that he needs to stay where he is.  But in the end, his "fate" lies within ONE person, the team leader.  Will she lean on ONE questionnaire, or will she "put it all together".  My instinct says she puts it all together.  I have been assured she does.  Deep deep down I know it will all be fine.  But, just like when positives are often drowned in worry and stress, my 2% of doubt somehow overcomes the 98% of certainty. 

He had a psych eval this past week.  I do not know the results.  I know that the psych conducted the WIPPSI on him, an IQ test for younger kids, and she stated that he is "very bright".  Well of course he is.  He's my son :p.  Hehe.  But despite an overall IQ score, this test can do way more than that.  There are sub tests within the test (saying she did those, I am nervous she didn't!).  It can find dips that will show which area Tyler may struggle with.  Such as...processing speed.  So even if he has an IQ of say.... 120.....  his processing speed could be quite low and could have a major impact on how he learns and therefor despite him being "super smart", he could struggle in school.  Getting this kind of information will help the school to see HOW he learns as well as help them to strengthen the weak areas so that he can perform at his best.

So, I guess I'll end with that for now.  I will share this last video of my boy.  Despite him being afraid of bugs, he IS showing interest in learning about them.  Remember, I said if we teach him about bugs, he might become less fearful.  His classroom had a cocoon and he was taught all about it turning into a butterfly.  He talks about this a LOT and at the park, here he is being a butterfly :





If that doesn't make you smile, I don't know what will.


-Tylers Mommy

April is Autism Awareness Month!!!

I know the month is already half over and I have not done my duty as an ASD mother to promote awareness on here.  I DID participate in light it up blue and I have been wearing my bracelet and pins.

My son has been just wonderful lately.  He has been super duper hyper because of not having his meds in about 3 weeks due to insurance issues, but it's being worked out.  He paces the house non stop, and is craving body input like crashing into things and being physical constantly.  He is getting in a little bit of trouble at school, it is affecting his ability to verbally express thoughts and ideas, and the confusion on our part (the parents) is stressing him out and causing some big tears and tantrums.  But I don't blame him for this!

This month he has been more fixated on things, but I have also noticed he has been happier as well.  I am able to easily get his attention away from the fixations so I'm OK with that.  I'm happy when he's happy ;).

Anyways, take the time to do some research regarding autism.  Educate yourself and learn to be more patient and understanding out in public when you run into a child struggling or tantruming because you never know if it is autism related, especially with the rates now 1 in 88.  With those rates, it is hard not to encounter a child on the spectrum at least once a week.

-Tylers Mommy

Saint Patrick's Day Parade

This past Sunday was the Saint Patrick's Day Parade.  In this city, it is a BIG deal.  People come from all over to watch this parade.

Last year, it was a little bit of a let down.  The parade was much shorter last year and well....kinda boring.  I had never been to one around here that was as bad as last year.  But they sure did make up for it this year!

There were TONS of people this year.  I think it broke records!  And it was so awesome to go with friends and family.  Mommy had a little to much to drink ;)....     Tyler was overwhelmed until the parade actually started.  He wanted to be left alone in his chair and didn't want anyone talking to him or touching him.  He fell apart into tears a few time for no obvious reason.  I've never seen him so shut down at a parade before, but I've also never seen that many people at the parade before.

After the parade started, he finally let lose :)  He got out of his chairs, danced, played with parade toys etc.  The parade lasted about 3.5 hours, not including the hour we got there ahead of time (we saved our seats 2 nights before).  We all started feeling exhausted by the end of hour 2.  Its nice to live in the town that this event takes place as we know the side roads to get home in a timely manner :)

Anyways, here's some video clips from the parade.  Enjoy! (I repeat, I had been drinking!!!).

Improvements

My Health:

Magnesium continues to be the key to helping my headaches.  The improvement is astonishing.  I am not good at all with remembering to take pills.  So if I go more than 2 days in a row without them, my head starts to hurt.  Or if I miss to many days in a week.  I just had a migraine a couple days ago.  But really, they have been reduced by a huge 75%.  I have been feeling SO much better.  I have also been going to the gym 5 days a week, am eating less and am LOSING WEIGHT!  I fear even sharing this.  I fear that I am jinxing myself.....   but I am doing it!

Tylers Health:

Tyler is currently taking an antibiotic for a sinus infection but this winter CONTINUES to be awesome!!!!  All the crazy bugs I keep hearing about has thus far skipped over us!  BOTH of us!!! Even I haven't been sick to much!!  One big change we have made this year is not using humidifiers.  His immunologist has said that humidifiers harbor bacteria. There are other possibilities.  But all I know is that it has been wonderful.

We continue to watch Tylers weight.  His BMI is sitting at 16% which is OK.  The Dr. is trying to get insurance approval for pediasure because I have had to buy it over the past week because his weight dropped pretty low.  I managed to get it back up with the help of pediasure and fattening non-ideal foods.

Tylers Behaviors:

I think I can comfortably say that we have hit the peak and gone over.  Now we are in the ups and downs stage.  He is crying a lot more which to me is replacing a lot of the aggression and violence.  We are still seeing incidences 5-6 times a week but they are less intense and don't last nearly as long.  We are on the right track.


Tyler continues to absolutely love gymnastics.  It's just so good for him.  The physical input is PERFECT for him.  He was suppose to start back at swim lessons last week but it ended up snowing so he will start this Wednesday.  We have been to the pool a few times this winter and he just seems SO weak.  Even my friends have commented on how much weaker he seems.  I have been thinking about having him do real exercises to strengthen his body.  But hopefully weekly swim lessons will help too.

So I guess that's about it!

-Tylers Mommy

And the beat goes on

Tyler continues to be doing better behaviorally. He had a pretty good weekend with us and he had a good morning this morning. The past 2 says he has shown pride in dressing himself with only being asked once. I hope it continues! Tyler's 3rd tooth is almost out!!! It is just barely hanging on. He wiggled it so much saturday that it got all swollen and irritated. But it looks better now. I STILL can't believe my child is losing teeth let alone already on his third and fourth. I'm glad it's not scary to him and he actually feels good about it. -Tylers Mommy

Still Good

We are still going good!  We have daily issues, several daily issues, but the "level" has been brought waaay down!  Today the lead therapist even noticed a difference :).  He continues to have rough days in school.  Today he did well though.  Lets hope this keeps going :)  It is much more manageable for his mom.

-Tylers Mommy

Two Steps Forward?

Though I am weary of the impending 2 steps back, I do feel joy in being able to share that the past 4 days was a little better. Ty did get in trouble every day at school. It's not entirely his fault as I really need to come up with a better way to remember his medication. But the issues weren't violent and that is good.

Though he had infractions daily in therapy, they were to a much lesser degree then weeks prior. We continue to work on hitting and spitting. But overall his outbursts and tantrums were short and manageable. Though my stress this week was high, it wasn't just over current occurrences. It was more the bigger picture. But the past few days have given me hope. The changes to his behavioral plan are going well.

We had an exceptionally good weekend with great behaviors from Tyler :). We visited grandma on Saturday and dealt with some small behavioral issues that I very calmly dealt with and the new method resulted in him gaining control of himself and adjusting his behavior. So no meltdowns, tantrums or screaming. He was just such a joy to be around. Tomorrow starts a new week and I hope that it is a good one.

 -Tyler's Mommy