Autism Awareness Month– Helen’s Story

Monday , 15, April 2013 1 Comment

In honor of Autism Awareness Month, PSMB will be featuring stories from local mammas who have children with Autism.  We hope you take a moment to read their stories.  We’ll start with Helen.  Please enjoy.

 

 

 

In honor of Autism awareness I wanted to write about our journey with Asperger’s.

I never noticed anything too different or off with Tristan when he was younger. He was my first child and I really had nothing to compare him to. Both my husband and I worked fulltime and he was in fulltime daycare. When he was about 3 or so one of his teachers approached us with some concerns and Jeff met with her and we dismissed it as “she doesn’t know what she’s talking about” as this also coincided with him coming home and saying “I am a bad boy”. When questioned about this of course the teacher denied that was ever said there at the daycare and suggested “maybe it is just something he knows from within.” Needless to say we got him into another preschool. He continued there and was ready to start Kindergarten. His teacher at the preschool was a retired Kindergarten teacher and had taught for 20+ years. When I asked her if he was ready for K she replied he was defnitely ready academically but not socially. We didn’t delve into this any further and again I dismissed it and didn’t think too much about it. Tristan was extremely bright and that is all we ever heard from his teachers so in my mind being very bright = nothing wrong.

He started K in a private christian school in a class of around 13 kids. His teacher stated that even with the small class size she could not give him all the one on one he needed. He was having a hard time with transitions and socially he was only doing “parrallel play” which is typically 2-3 years old behavior and he was 5 years old. He had no interest in interacting with the other children and was generally just hyper and a handful. A speaker came to the school and spoke to the teachers about sensory integration dysfunction. Our nervous system recieves messages from the senses (sight, taste, smell, touch, sound etc) and turns them into the appropriate responses. When you have sensory dysfunction these signals don’t get organized into the appropriate responses hence struggles with sensory issues. Some examples of what Tristan struggled with – tags in clothing, socks and shoes not “feeling right” (I bought so many new shoes that went to waste becase they didn’t “feel right”) loud noises, textures in food, having such a sensitive scalp that at times he would cry when I cut his hair, just to name a few. There are countless sensory issues that can manifest in lots of different ways. Anyway his teacher approached me about this and said it sounded to her like some of the same things she saw Tristan struggle with at school. When Jeff and I read up on it we agreed with her and decided to get some Occupational therapy for him. It did improve things but in no way “fixed him.” We did exercises with him at home many times a day and I would go to the school and do these exercises and “brush” him (google it 🙂 ) In the middle of the school year we had a meeting with the headmaster and teacher and were basically told not to bring him back the following school year. I was completely devastated and heartbroken. We were in shock and Jeff stated “if this is christianity then I don’t want anything to do with it” which of course made me even more sad. Then even more humiliating was having to finish out the school year there. Since it was the middle of the school year all of the private schools had already accepted enrollment and we decided to send him to public school.

He started 1st grade at public school and the very first day of school I got a phone call from school. He was not listening, cooperating, crawling under tables, not wanting to stand in line, just not follow directions in general and they wanted a meeting with Jeff and I the very next morning. Again I was heartbroken and devastated and just didn’t understand what was “wrong” with my son. Then I had to turn around and go cut someone’s hair and act happy like the phone call hadn’t even happened, it was so hard 🙁 we met with about 9 different people the next morning and got some plans in place to try to make him be successful etc and they wanted to test him to get more answers. He wasn’t tested till the end of the school year because of the waiting list of kids and once we finally got the results I took them to his pediatrician who stated that he had ADHD and we promptly put him on meds. My biggest regret came here – there was a section of the testing on Aspergers. I had never heard of this and didn’t think it applied to Tristan as he was still young and some of the Asperger characteristics were not fully manifested like the social issues etc. When the teacher filled out her portion he tested “highly probable” for Aspergers and under what Jeff and I filled out he was leaning towards Aspergers also, can’t remember the exact wording. It was dismissed by us and the pediatrician never even acknowledged it.

He got through 2nd grade and had the same teacher for his 3rd grade year so she knew him pretty well. She said that she was seeing some behaviors in him that to her were not “ADHD behaviors” – his monotone way of speaking and one time when finished with testing he was playing with a calculator and pushing the same button over and over for 45 minutes, things like that. I sought the help of my older brother as he is a psychiatrist and he told me to take him to a child psychiatrist which we did. At this point Tristan had developed “tics” which I believe were triggered by the medication he was taking. The psychiatrist of course slapped him with another medicine to reduce the tics 🙁 she diagnosed him as being on the Autism spectrum but as it wasn’t her specialty she couldn’t give a name to it exactly and referred us to TEACCH which was an Autism program that did diagnostic evaluations among other things. This is the point where again I heard Aspergers and after educating myself about it I knew that is what Tristan had. We were on a waiting list for months and when he was finally diagnosed and she stated “we believe your son has Asperger syndrome” it was both a shock and a relief. I finally had an answer to all the why’s. Why doesn’t my son behave the way other kids do, why does he act the way he does, why does he react to this this way, why why why. It was like I finally had the missing puzzle piece which I did.

We took Tristan off the meds as it was having terrible side effects and I haven’t given him medication since. I know some medication can help reduce anxiety and the other side symptoms of AS but I chose not to go that route for our family. He started 4th grade and struggled but had the most awesome teacher who worked with me so much to help him be successful. At this point he was doing some speech and OT and were working to get an IEP in place. We also sought the help of a naturopath and changed his diet and gave his body the supplements he needed to benefit him. He was in a regular classroom and was being pulled out to a resource room for his core subjects so he could work one on one with a teacher. He made it through 5th and 6th grade but it wasn’t till he started middle school that I really believe he flourished. He was bused to a school that was 30 minutes away from us in order to attend this school that had a program for AS/high functioning Autism. The teachers there were phenomenal and were instrumental in getting him through his middle school years. We moved to Greensboro and he did well with the transition and new school and honestly was such a blur as that was when we had the addition of our 2 little girls. Since then we moved to Atlanta and he again had to go through a transition with a new school etc. He has gotten more flexible through the years and able to take on more and more which is why we decided to have more children in our later years lol. We still have our struggles, still with transitioning, being obsessed with the computer/Roblox and not wanting to do much else, making friends, just to name a few. He is a great kid and looking back I know we were in God’s hands the entire time. I can honestly say now looking back that everything happened for a reason and I am glad everything happened the way that it did.

One of my “low days” was probably when the preschool director at church asked to speak to me after Sunday school. She just stated all the issues that Tristan was having and how she wanted to move him to a different class. It’s just not fun to have to listen to all the things your kid does “wrong.” I was getting it from school, now church. I leave there and catch up with my parents who were waiting for me and my dad starts talking to me about Tristan, when he comes to their house/spends the night, that they don’t know how to “handle him.” I cried all the way home. I guess the biggest struggles were that he looked “normal.” I struggled with what people thought of me/us – that Tristan was a brat, we were bad parents, he was spoiled, we didn’t know how to parent, he’s a bad kid, WE WERE BAD PARENTS. Honestly sometimes I wished that I could hang a sign on Tristan that said “my son has a form of Autism” so people wouldn’t think bad of me/us out in public. I think I just cared too much about what people thought, at least that is what Jeff said lol. We also struggled with when he would have these bad behaviors, where do you draw the line between he needs to be disciplined/punished because he is acting out versus it’s Aspergers and he can’t help it. Those were probably my 2 biggest issues. It was and still is a learning experience. I would probably tell those new to this journey that it is not your fault, and you didn’t do anything wrong. Let yourself grieve and mourn for the loss of what you thought your child was going to be, surround yourself with lots of family and friends and find a support group whether online or in real life. It really, really helps to talk to others going through similar experiences so you know you are not alone. Remember you have loved your child thus far and educating yourself and being your childs advocate is just another way of loving them.

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One Comment
  • Harvey says:

    Helen, thanks for sharing your story! I commend you and Jeff for your determination and success in not giving up in the face of difficult circumstances.

    You and Jeff are great examples of Parenting for others with similar challenges.

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