"You laugh because I'm different. I laugh because you're all the same."

Tuesday, January 19, 2016

17 months later...

It is 1:40am and I am unable to sleep. Not for any reason at all. And that's a good thing. I haven't written in almost 1.5 years. So much time has past. I read my last to posts and I am so very happy that this post brings a lot of positivity and good news.

I didn't stop fighting and as a result we finally have improvements for Tyler. Where do I start??  Tyler continued to struggle for over a year past my last post. It was such an incredibly hard year to watch my son deteriorate. He ended up regressing in almost all areas. In March 2015 I went to our special education director expressing concern over Tylers regression. She really did not want to deal with me and did not say anything helpful. My husband and I started thinking about a new school placement for him. The school he was in is great at what they do. But they don't do severe language learning disabilities. They were fantastic at rehabilitating him emotionally and teaching him a lot of life skills. But he still was not learning how to read and write.

His fatigue continued. He quit all activities outside of school. We added a second seizure medication that is also suppose to help with headaches. That helped the headaches tremendously. We saw a slight improvement in fatigue around Christmas time in 2014. Then Spring came and I thought I was seeing some seizures. They did an EEG. No seizures were captured but discharges were indicating seizures had occurred or has the potential to occur. As a result his dosage for his primary seizure medication was increased. He had another horrible summer.  At this point I felt it was time to try another medication to see if the problem was the drug. But his neurologist disagreed and would not switch him. Finally in the summer I asked that his blood be tested for medication levels. The results came back indicating his medication level was borderline toxic. His neurologist was away on vacation and the covering neurologist was hesitant to do anything. But she then said how about you go down to the lower dose until his neurologist gets back. So we did. And it helped but it didn't fix the problem.

During this time we are also battling the public school system. We made the decision to switch Tyler to a school primarily for language learning disabilities. The spec Ed director was not in favor of this but she did eventually agree to send out packets. I won't get into the mess of all that. It was a hard decision on our part because he was still dealing with fatigue and we were so worried about his emotional well being. But we had to look at it this way:  Tyler will likely be able to live independently as an adult with his level of autism. But. He will NOT be able to do so if he also can not read or write.

We met with the neurologist some time in August and we argued over trying another medication. He agreed to allow it. This began a several month wean off of one drug and titration onto another. The result has been nothing short of miraculous. My Tyler slowly but surely started coming back to us. By October he was 100% the silly, goofy, hyper, active child that he was before the seizures began. I can not even begin to express the change, the relief, the happiness.

Tyler started his new school in October 2015. I will not share the fight to get there because it is just to draining on me. But we did persevere and Tyler is now in a school that focuses on dyslexia based programs and they are provided throughout his entire day. They started completely over with teaching him how to read. Less focus has been on writing but that is something we will discuss in our annual meeting in June. So far they are doing the best they can to support the autism side of things. There is some struggles there but I can honestly say they are working together, and with me, to accommodate him in those ways as well.

Tyler is now on the YMCA swim team!!  This time last year he was on the pre-swim team. They met twice a week and he struggled to get through an entire practice, often having to leave early and skip many practices. We eventually pulled him out. Then in October when he was at the end of the medication transition I enrolled him again. He did so much better. He made it through all practices and attended almost all practices. So we decided to step it up. He was enrolled in swim team this current January 2016. He goes 3 times a week!  He will not be competing this time around. I enrolled him mid-season and it ends in March. I do not want to push to much at once so for now, no meets. Just practicing and learning and focusing on being there most of the time.

My own life has greatly improved. I have been on a major weightloss and fitness journey. So far I am down 100lbs. I have 50 more to go. I feel wonderful and healthy and so much happier. I just can't believe how much different life looks right now compared to 1.5 years ago. Tyler has also been doing great with illnesses. I wonder if part of that has to do with his newest school having absolutely no carpets. It is January and he hasn't needed steroids once yet this winter!  He's had a few colds and a few nasty viruses but he has recovered from them all on his own with no medical intervention. So even that had been wonderful for the 2015/2016 year. Knock on wood!!

Anyways. I should try to sleep now!  Can't be tired tomorrow. I have things to do!

-Tylers Mommy

Monday, August 18, 2014

Struggling



I finally came into autism acceptance a couple years ago.  By acceptance I mean that I do not question his diagnoses.  I use to question it daily.  It was a stupid, stressful way to be.  I am someone that wants facts.  Definitives.  I hate hearing "maybe?", "we'll see", "borderline", "not sure" "atypical presentation".  There is no blood test to diagnose autism.  It's entirely based on the opinions of specialists.  Objective.  And everyone's opinion is different.  So despite autism specialists diagnosing and then rediagnosing several years down the line, autism, I had the nay sayers.  Some school personals.  Friends.  Family.  Other medical providers.  It made for a confusing time in my life.  But one day I just said yeah, this is high functioning autism.  He is not neurotypical.

But it's not just autism that I have to accept. I have been in pity mode all summer. I didn't even plan my kids birthday party until after his birthday. I've gone on some camping trips and beach trips and while I am physically there I am not mentally there. My child's autism is not severe at all. It affects him in several ways all on a mild plane. He's very social, his speech and language is great, especially for a child on the spectrum. He is a huge sensory seeker but that is mostly portrayed as being all lovy dovey touchy feely with people which at age 8 is STARTING to look socially awkward. But it's the pile ons that compound his battles. I have no clue if these other struggles are in part due to autism. But I am struggling right now with the fight. I am endlessly fighting everyone in our lives to respect him, provide for him, listen to him and support him in all of the areas that are trying to road block his development.

The hardest part is school. His school is now amazing. I couldn't ask for anything better for him. They have had him now for 5 months and done their own assessments and they have validated every single thing I have said. That he is not a behavioral child. That he is one of the sweetest children they've ever met. That he is a big sensory seeker and needs a LOT of breaks. That he can not tolerate a large classroom. This past year as a second grader he was one of three students. Typically he'd move on to third grade this coming year and into a classroom with a max of 6 students and a mix of 3rd and 4th graders. But they aren't sure he is ready for that.  So his classroom placement for the coming year is still unknown.  Last I heard they were going to a 2nd and 3rd grade classroom with maybe a 4th student.  I guess we won't know for sure until he returns from his week off next week.

They have accommodated every single angle and side of him. He even has a nap time once a day due to the fatigue he is experiencing with the seizures. We aren't even sure that the fatigue is all due to seizures :(.  I am so sad though. Because this summer his academics have regressed. They accessed his reading and it is again below 1st grade level (the test doesn't go lower than that) and his writing is awful. They are pulling in an iPad this month that can read and write for him. I hope it can work miracles. But even his strongest subject, math, is now suffering. He is struggling to do single digit addition without a number line. He has anxiety attacks when math is placed in front of him where he gets hot and sweaty, nausea's, and cries. I was living in this fantasy world that if he was placed in the right setting with the right services and supports he would take off soaring. So we do that and then he starts having 50+ seizures a day. What. The. Fuck.

So I am asking myself. At what point do I decide this is how it's going to be. It won't get better than this pace. There aren't any more services or resources to try. We've done it all. He's working at his own rate but I am struggling to accept that. Because his IQ test says he is capable of performing on grade level. Then why can't he???  Why is he suffering through adults pushing him non stop day after day to learn. It shouldn't be suffering. I get that school is challenging in general. But he is suffering. And don't tell me children with autism do not suffer. My child cries every day and wishes he could stay home and sit in my lap all day long while I hold him because he is hurting, confused, and says himself that there is something wrong with his brain. If that isn't suffering I don't know what is.

I know it could be worse. He could be dying. I know there are different degrees and thousands of children his age that can't even pick up a pencil let alone write legibly. But it doesn't mean this doesn't hurt.  They describe him as going from silly and happy to  now muted. What causes that in a child???  He has been having a lot of headaches and when I took him in to school today he looked awful. He laid on the couch in school with his head on his bear ready to sleep. He told his case manager about what his body and mind experiences when he tries to do math. His rote memory is awful. He can't even memorize the words to Twinkle Twinkle Little Star. Why???? Why doesn't he understand that when an instructor says "ok everyone gather around I want to teach you how to aim" does he not understand that "everyone" includes him?  And he just stands there alone until they realize he hasn't come over and he requires direct individual instruction to join the group.

I wanted my child to be able to experience the joys of team sports, earning awards for accomplishments both academically and otherwise. I wanted him to sit in a classroom of 25 kids and learn how to do fractions with them. He can't even ride a bike right now or swing on a swing set because a seizure could occur. Am I just suppose to accept all this?  Let it go?  Say well so he slept half the day at school and cried the other half. Oh well. Give him a hug and say try again tomorrow  it is what it is??  It's getting to the point where I feel like there is nothing else I can do. There's nothing else to fight for because he has so much support. And so there is no more fighting and now I just sit back and "enjoy the ride"?  First and foremost I want him to be happy and healthy and I don't want him to hurt or experience anxiety or fear or failure. There is way more anxiety and failure in his life than anything right now. I do my best to oogle over the work he brings home as his councilor instructs. I tell him how amazing and creative he is every single day. He is so proud of his archery. He is loving it.

He loves archery, but he doesn't have the energy to go.  A 5 day summer course, 1.5 hours each lesson is to much on him.  By the 3rd lesson we had to FORCE him to go because he was to tired and worn out.  So in September we hope that going down to once a day will help.

Why can't he walk through a museum without having to ride in a stroller that is way to small for him?  Why is he so fatigued that he gets wiped out after 1.5 hours at a childrens museum and then has to lay down the rest of the day?  I am going to continue to try and figure out what this is.  But part of me doesn't want to anymore.  All these appointments and tests are so hard on him and no one knows whats going on.  Do I just stop?  And accept that my child just can't stay upright for a full day anymore?

I am feeling so much anger, frustration, fear and hopelessness right now.

-Tylers Mommy

Wednesday, August 13, 2014

Update - Seizures

It has been a long summer.  So much stuff has happened.  A lot of it tough.  Tyler has been in school all summer, as his new school is a year round school.  He got a week off at the end of June and he will get a week off at the end of August.

At the end of April, his school started to report to me that Tyler was being very very spacey.  They said often times calling his name a few times would "bring him back".  They felt it was an ADHD thing.  Day dreaming.  And well, my boy can be a day dreamer.  I didn't think anything of it.  Then he started to become fatigued.  He wanted to lay down a lot.  He was droopy and mopey.  The school was reporting the same thing.

This continued into May and I started to get concern.  At first I tried to explain it away by a growth spurt.  Then we said well maybe he's getting so much more attention at school that it is tiring him out.  But it slowly got worse.  I finally took him to the doctor at the end of May.  I wanted to make sure he wasn't anemic.  He has been anemic once before.  She ran a bunch of blood tests from anemia, blood sugar levels and even mono.  The only thing that came back abnormal was his blood sugar.  2 hours after breakfast he was hypoglycemic.  I got those tests back on I believe it was a Thursday.

That weekend I recognized a seizure for the first time.  He was standing in front of me in the living room and mid sentence he stopped talking, turned to the left, his eyes went to the left and up and he just stared.  It only lasted a few seconds but I was pretty certain I knew what it was.  From then on I was of course hyper-vigilant and as each day went by I noticed more and more every single day.  I called his pediatrician on Monday and she saw us that day.  She had an EEG ordered for that coming Friday and we were to leave for a beach trip to Virginia Saturday morning.

The EEG only lasted about 20 minutes.  The technician tried to induce seizures by flashing lights and hyperventilation but she was unsuccessful.  I thought great, it's not gonna happen during the test, as usual, and I'm gonna look like a nut.  Towards the end of the test Tyler spontaneously had the same kind of episode I saw in my living room.  The technicians attention changed instantly.  She called his name no response.  She said "peanut butter sandwich".  No response.  When he "snapped out of it" (only about 6-10 seconds later), she asked him if he could hear her.  He said yes.  She asked what did she say, and he was able to repeat it.  So, I thought nope, that wasn't a seizure then.

When she was cleaning up and taking the electrodes off I stated "so everything looked good huh?".  She said "I am not allowed to say anything".  I stated that we were going away tomorrow for a week and we would be at the beach.  I just want to make sure he is safe.  She said "I would not leave his side for even one second near the water.  He will probably need a 24 hour EEG".  Well, that told me that something did in fact get picked up.

We left the next day and that week was awful.  I was seeing 10+ "episodes" a day.  I called his pediatrician on Wednesday looking for results and she didn't have them.  By Friday he was more and more fatigued, laying on the ground suddenly and just laying there doing nothing.  He had done things like walked off from our side without even knowing it.  I was a wreck.  I called the pediatrician again and she wanted him to be seen at the local ER to make sure he was safe to travel.  So we took him to the ER.

In the ER they performed another EEG.  Again, it was 20 minutes long.  During that time they were able to induce 3 "episodes" and he had two spontaneous ones.  The neurologist stepped in during the EEG and witnessed the episodes and read the EEG.  My baby boy was indeed having seizures.  Lots of them.  They said he was having 3-4 an hour, 50-100 a day.  He prescribed Tyler seizure medicine that he started taking that night.

When we got home we went right into the pediatrician who by this time had the EEG results.  The first EEG he had actually detected two spontaneous seizures.  One of them he was counting to 10 during (as instructed) and there was NO sign what so ever that he was having a seizure.  No pausing, no looking away, no convulsions, nothing.

The seizure medicine is working SO well.  I see maybe one seizure a week and it is SO hard to tell if it is a seizure because he doesn't completely go unconscious.  He has both typical and atypical Absence Epilepsy.  It is atypical when you are able to someone respond to your surroundings.  On our vacations he had several of those kinds of episodes where he seemed confused and disoriented, but he was able to talk a little, sounding somewhat drunk and not making much sense.  And I see an episode like that about once a week.

Despite stopping the seizures, Tyler continues to struggle with fatigue.  We don't know if the fatigue is now due to the medication because he had fatigue prior to the medication as well.  The school describes him as going from silly and hyper to "muted".  We do not know what is going on but the school is monitoring him.  He had a sleep study last weekend.  I haven't gotten the results yet but I suspect they were normal.  He is going back to his pediatrician first week of September to discuss the problem.  My son has gone from hyperactive to sluggish, lazy and mopey.  Simple activities are exhausting to him and he doesn't even care about participating in fun activities at school . He now takes a "nap" every day at school (he doesn't actually sleep, it's a quiet rest time on the couch).  He has been having a lot of headaches and he is down on himself.

So.  We fight more.  On and on.  He is thrown bomb after bomb and we are constantly trying to dismantle them.  This war has been exhausting and heart breaking.  I often wonder when my breaking point will arrive.

-Tylers Mommy

Saturday, May 24, 2014

Final Autism Educational Post Part 2.5 of 3

I know I know.  I suck at writing on a regular basis.  *shrug*.  I don't have any good excuses.  Sorry.

2nd Grade:

Oh where to begin.  2nd grade was awful.  Purely awful.  School started the last week of August.  I don't recall this ever happening around here.  School typically starts first week of September and ends mid June.

No IEP meeting set yet for the rejected portions.  However, Tyler is brought down to a 1:2 shared para instead of a 1:3.

The first day was tough for my boy.  So many rules.  And so much anxiety over following those rules.  The teacher describes the use of hand signals to indicate needing to use the bathroom, to get a tissue, or to get a drink of water.  On top of that the kids are required to sign themselves in and out including writing down the time.  SO much anxiety for my boy.  He came home crying.  Crying that he can't figure out what hand signals to use and he can't write and he can't read the clock etc. etc.  He CAN read a clock, but he can't generalize.  This means, he can read the teaching clock at home, but he can't read a clock in other settings.  Children with autism have a hard time generalizing skills.  The teacher then uses signals to respond.  Yes you may, no you may not.  Tyler said he has no idea if she's giving him permission or not.

So.  Day 2 we have our first meeting.  Ha.  They say they will help him sign in and out, and he can just raise his hand and verbally express a need and the teacher will verbally state yes you can or no you can't.  OK.

2 weeks in, my son is a mess.  He's crying frequently.  He describes the classroom as loud and the teachers as "talking to loud".  He uses the word "yell" sometimes to describe the tones of voice used by adults in the room.  He says his para is harsh and snaps at him.  He says he can't do the work and he hates being there.  When confronted, I am told that the teacher has to talk loud so the whole class can hear, but Tyler is probably perceiving it as yelling.

4 weeks in and he's completely falling apart.  He is still not getting ANY of his pullouts.  Tyler doesn't just need pullouts for their intended use (academic support, OT etc.).  He needs them for a break from the classroom.  A classroom of 27 kids.  He's having breakdowns at home saying he can't be in the room, that he can't learn there is to many kids.  That they don't "help me".  That they take away his recess every day.

Tyler describes similar incidents as this example:  He's walking in line to music class and he's "not looking forward, he's looking at the bathroom door" and his para yells at him to pay attention and walk.  He cries.  She makes him stand outside the classroom to cry while everyone else goes in.  Another time, again at music, the teacher wants the kids to listen to the tempo and volume of songs and write down if it's slow, fast, loud or soft.  Tyler can not multi-task like this.  He is trying to process what he just heard.  And again, he can not write.  So the teacher is way ahead and he's still stuck on #1.  His para starts yelling at him that he needs to DO HIS WORK.  He tries to explain that he doesn't understand, but she cuts him off saying she doesn't want to hear excuses, do it.  He cries.  She sends him to the door to cry alone.

I make the decision to remove Tyler from school until something is done.  I want a different para for my son.  One that is more experienced in learning disabilities and autism and one who has a gentler approach.  I get his doctors blessing to hold him out of school for his psychological well being, until something is done.  The principal asks to speak to me.  It is clear she does not want to hear ANY reason as to why I have chosen to hold Tyler from school.  I even have Tyler tell the principal face to face whats going on.  She is highly dismissive, states that I have no proof that he is being mistreated, and that she will call social services if I don't have him back in school.  She indirectly accuses me of lying about a note from the dr, because they had not yet received one.  The doctor only works twice a week.  He hadn't gotten around to the note yet.  But they didn't believe me.  She threatened to call social services 3-4 times before I left.  She refused getting him a different para.

I also asked why he wasn't getting his pullouts yet.  The principal said she wasn't here last year so she doesn't know what he's suppose to get, and it's the beginning of the year, they need time to get everything in order.  It's been FOUR WEEKS. Kids on IEPs are suppose to be receiving ALL of the supports on those IEPS from day 1.  These kids depend on these services.  Not receiving them can be costly.  My son is not the only child that can be significantly emotionally and psychologically harmed without these supports.  Can you imagine sitting in a classroom of 27 kids and being the only one that can not read what the teacher wrote on the board, and can not write your assignment?  And being harassed because you "aren't doing your work?".

Thankfully the school is able to get the IEP meeting within a weeks time.  Tyler misses 7 total days of school and of course I get that letter.  At the meeting, I find that someone entered his IEP into the computer system wrong.  Someone put it in as a fully rejected IEP (vs. partial rejection).  This means that the reverted to 1st grades IEP, and therefor he was actually receiving NO support whatsoever.  The assistant director of special Ed attended this meeting.  They went over the lack of speech therapy and without argument, gave Tyler speech services.  The speech therapist was obviously in disagreement, and the way she treats Tyler later in therapy is indicative of this.  In this meeting, the teacher also stated that Tyler is now reading at a D/E level.  He has some how jumped from a C to a D/E (there is a large jump from C to D).  We say we disagree but there is not really an argument over this.

So Tyler is returned to school with these supports.  His language arts specialist is AMAZING.  SHE is what a teacher is suppose to be.  She provided 3 hours a week of 1:1 specialized reading and writing programs.  She accommodated Tyler during her time with him by using a visual schedule so he always knew what was expected that session.  She always started with something that was multisesnory and a confidence builder.  She worked FAST so that his brain did not have time to worry about whether he'd be able to do what she presented to him.  He UNDERSTOOD the programs and within 2 months my son learned all his letter sounds.  He LOVED this teacher and she is the ONLY REASON he went to school....so that he could see her.  He told me that he was afraid that the school would try and punish him by not allowing him to see her!!!  Doesn't that make you want to cry????

This reading specialist allowed me to sit in and observe a few times.  I saw a fully engaged child that was excited to learn, knew exactly what he was doing the moment he walked into the room, and completed all tasks 100% with no issues at all.  The teacher was soft spoken but engaging, always sounded excited to work with him, and loaded him with praises.

This reading special also did some of her own assessments.  His spelling and writing tested to be at kinder level and low and behold, using the same reading test, found him to be at an independent B reading level, an instructional C reading level.

But everything else was still awful.  His para was doing most of his work for him while he sat there doing nothing.  In that meeting in September, our advocate suggested that his para scribe for Tyler.  However, they went from one extreme to the other.  From no help, to doing everything for him.  Tylers home behavior therapist observed one day and she said the para was not only doing everything for him, but she was not engaging him and answering the questions herself as well.  She said Tyler was bored out of his mind and his body was never at rest.

Tyler comes home almost every day saying he was yelled at and/or punished, that he hides under his desk and his para tries to drag him out by his legs. That he has a hard time hearing the teacher and para and that the para pulls him across the room by his arms.  He says his teachers don't like him.  He says they yell at everyone.  He says he hits himself but they aren't reporting it to me.  When I confront the school they deny that they see any anxiety in him nor self harm.  Yet even his school bus had to make reports of self harm and freakouts.  Lies.  I am told by various parents and others in the school that they hear stories about Tyler.  About him being under his desk and about how he's always sad.

During the week that I held Tyler out of school, we went to the park.  When there, one of his classmates was there.  He is on the spectrum too and was out of school for an appointment.  They had a conversation.  A conversation that told me that everything my son was saying was true.  He told Tyler he doesn't like his para, that she yells at him to much.  He says that Tyler can be on his "team" at recess so he won't be so sad.  It's hard not to ask this other child questions.  I say "Tyler is sad at recess?".  The boy says "he doesn't play with anyone.  He's by himself.  He can play with me so he's not by himself".  That was when I knew, for SURE, that my son was being mistreated and that he was not respected or understood AT ALL.  But how do I prove this???

Tyler is not receiving most of his pullouts.  He received almost ALL of his pullouts with the reading specialist, OT and ST.  He says his ST talks to fast and snaps at him.  But he is also suppose to get small group pullouts with the spec ed teacher 6 times a week for 30 minutes for reading and writing.  He's lucky to get this 1-2 times a week.  Social skills group is suppose to be 2 times a week, he's lucky to get it once a month.

Despite receiving the 3 hours a week from this awesome reading specialist, the skills are not being generalized and by Christmas, Tyler has made NO PROGRESS in reading or writing.  It was in I believe January that his reading specialist did that reading test that said he was still at a B/C reading level.

Between the lack of academic progress and the declining mental health and mistreatment of my son, so begins my plight to get him removed from this school.  Yes.  I'm going to turn this into a part 3 of 4 because, this is a long story...... as exhausting as it is for you to read, it is for me to write.

-Tylers Mommy

Thursday, May 1, 2014

Final Autism Educational Post Part 2 of 3

First Grade:

First grade was a joke. There were now about 8 kids with autism in the classroom with two paras.  That is not enough para support.  His classroom had a substitute teacher from the second week of September until January. The classroom was often out of control and not receiving the same academic services as their neighbor first grade classroom. By November I was seeing that my son was not making any academic progress at all. I met with his substitute teacher and his special ed teacher multiple times. The substitute teacher would start to say that she is concerned about him and needs help and the special ed teacher would cut her off and say "no I see this all the time one day it will just click he will be fine". There was obviously bad blood between us after our multiple arguments over him losing all academic support between the meetings that we had for him going into first grade. The special ed teacher was on a power rush and would not budge her stance. By January my son was still at the same reading level that he was at when he left kindergarten and he was doing less than 1/4 of the work presented to him daily.

 I had meetings with the BCBA because they were taking his recess away from him frequently for not doing his work and having breakdowns. He was yelled at constantly and he started to deteriorate emotionally.  He made comments that his teachers didn't like him.  They were singling him out.  By mid year he began self harm.  I tried to explain that he complained that the classroom was to loud, there was to much to "look at" (the walls are covered floor to ceiling with "visuals"), and the work was to hard.  The spec ed teacher kept insisting it wasn't the work, it was his non-compliance.  She would make comments that he did better on his ADHD meds (he had really bad side affects and she had no clue we had taken him off them a month prior to us telling her, she only started making comments AFTER she knew!!!).  They put some sensory strategies into place for him which were helpful and they updated his behavior plan with very specific ways on how to handle his behaviors without punishing. This was all helpful however they lacked consistency with it.

The teacher that they finally placed with the class in January was a paraprofessional who had just gotten her degree. She did not know how to run a classroom and was thrown into a classroom of chaotic kids. We had my son observed with her multiple times and we were told multiple times that the teacher did not know what she was doing and had no control over the classroom. She was also a close friend of the special education teacher.  Tyler continued to deteriorate both academically and emotionally.

I took matters into my own hands and in January I got my son evaluated for learning disabilities. That evaluation determined that my son has dyslexia, dysgraphia and word retrieval disorder. I was also advised to take him to a neuropsychologist because a neuropsychologists evaluation would back up this evaluation and hold a stronger case for the school. We had that evaluation in March. It showed that he had a low average IQ, was borderline for language processing disorder, was significantly behind in reading and writing, reconfirmed dyslexia and dysgraphia along with autism, ADHD and anxiety disorder. After I received those reports I hired an advocate. Though costly, hiring this advocate was the best thing I could have done for my son.

I didn't have all of the reports until April and I turned them in after our advocate went through them. We had his yearly meeting at the end of May and we brought our advocate. By this point Tyler's case was so complicated and full of disagreements that the school system had to have the assistant director of special-education attend the meeting.  Walking into the meeting the school was proposing some academic support for 2nd grade. After discussion and thanks to the assistant director, we agreed to almost the equivalent of an hour of reading and writing support a day. Some of that time would be 1:1 with a specialist and some of that time would be small-group with a special education teacher whom we were assured was trained in the specialized programs Tyler needed. At the time it was my understanding that his current special education teacher would not be working with Tyler in second grade because she is only for kindergarten and first grade.  When Tyler went into second grade the school decided to bump his old special education teacher into second grade so now she was in charge of three grades. She is NOT trained in these programs and she already greatly disliked my son. I was horrified.

Back to that meeting.... Our advocate also made sure that they were clear about him needing frequent breaks throughout the day and that he received the sensory support that he required.  There was one thing the school would not supply for my son and that is speech therapy.  His evaluators said, both in the reports and at the meeting (that we had to pay for), that he needs speech therapy for his word retrieval disorder. They argued that dyslexia programs were designed by speech language pathologist and meant to be delivered by speech language pathologists. This argument went on for about a half hour but they wouldn't budge.  We could see the assistant director processing stuff but he didn't really contribute.  He just kept the argument from escalating.

Directly after the meeting our advocate spoke with the assistant director of special education and the assistant director told her that Tyler would receive his speech services. I received the IEP about a week later and speech services were not on it. I signed the IEP with rejected portions which were that he did not have speech services on there. Rejecting the IEP, partially or in full, means another meeting HAS to occur.

This is all I am going to write for part 2 because part 3 is also very very lengthy.  2nd grade was both the worse part of this story, but becomes the best part.

I want to close this post with this:

How does a school system deny a child with a diagnoses of autism, a child that has a history of academic struggles, access to much needed support?  How could they watch him for an entire year (1st grade), making literally ZERO progress, and do NOTHING.  How can they sit there and tell me meeting after meeting that he doesn't NEED help when he made ZERO progress?  How can a child leave 1st grade stuck at a mid kindergarten level in reading and denied any and all support, a child who can't write, and barely copy a simple sentence, and deny any support?  Why did I have to spend $2,000 to get him evaluations that the school should have done?  WHY.  My son isn't the only one.  Far from it.  It is so so so stressful on the family emotionally, financially....and think of the damage it does to a child who knows and understands that he is not able to do the things other children his age is able to do.   How must it feel to think that your teachers don't like you?  It can ruin a child.  Forever.

-Tylers Mommy