Checking The “Disabled” Box

Last week I was trying to get our taxes done and normally it’s not a big deal.  I didn’t think this year was going to be any different. I just wanted to get this heap of information entered and be done! There was one difference between this year and every other year previously.

This year included checking the “disabled” box for our little man. It’s a fact and it didn’t really ever bother me before that one day. Even when we got the letter that he was declared “disabled” I was ok. I felt like that was what we needed to help him. We needed that to be eligible for some of the Autism programs in our state. This one click of a box made me feel like I had just been kicked in the stomach.

It’s no secret that we didn’t have an all supportive response from people in our lives when they found out about Aiden’s diagnosis. The lack of support still is the same now, one of the many reasons I don’t share Aiden’s “disabled” status. It is an indescribable pain to know that people judge and mistreat your child because of something he had no control over. I also don’t want him to be treated like he can’t do something. He is so bright and making so much progress.

Once this comment was made “he may not make a whole lot of progress and may be like this forever”. He was not even three yet and I didn’t listen to that thoughtless comment for one second. I just knew that I was going to spend the rest of my life working as hard as I could to help Aiden and to prove those ignorant people wrong. Since that day, he has continued to prove every doubter and disbeliever wrong.

This afternoon Adam & I have Aiden’s IEP meeting and for some reason I am feeling uneasy about it. Last year I went into it with hope and feeling good. This year I feel like moving him to the 4k from early childhood is going to be like throwing him to the wolves. I am so worried, and didn’t sleep much last night. Fingers crossed we all can work together to do what is best for Aiden.

I am determined to help my little man in any way that I can, whatever his status is! That one word does not define him or limit his possibilities!

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Extraordinary Little Boy

"If he even has half of your determination then he will prove everyone who ever doubted him wrong!"

I woke up this morning knowing today was a big day for us. Adam and I had Aiden’s IEP meeting this afternoon and to say I was a little nervous would be an understatement. The one thing I knew going into it was that no matter what was said during that meeting, that the other people on this team had his best interest at heart. They wanted what was best for Aiden, just like Adam and I do. I will save you every detail and comment from the two hour meeting and give you the highlights.

They went around the table sharing with us Aiden’s strengths. The areas where he is excelling and all of the areas that they are amazed with his progress and accomplishments. They also kept mentioning how they could not believe how well we knew him, his needs & how much we have done to help him. I don’t know why we wouldn’t. He is our son, there isn’t anything that we wouldn’t do. According to them having parents like us is rare. 

We then talked about areas of concern & the areas that we need to work on. Nothing they said was a surprise to us, we know from everyday life that there are many areas that Aiden struggles with. This time was different though. For one of the first times in a very long time I felt like someone saw the Aiden that we knew. They saw Aiden as a little boy who yes, needs some help & learns differently but that he a bright, bubbly, happy, sweet little boy. They didn’t let his diagnosis define him.

For the first time too we had some concrete answers. We know the exact areas that he is struggling, we now have a much clearer plan on how to help him & we now have a team in place other then the long list of doctors and specialists on his team to help him reach our goals. We now know what we need to work on with Aiden’s speech and language. We know that even though he had been excelling with OT there are some clear areas that need some improvement and work. We also now have yet another conformation of what we already knew & what some have doubted. Aiden does in fact have autism and he also qualifies for educational autism.

Moment of frustration: Don’t get me wrong, I have seen Aiden make a lot of changes in the past year that he has been doing speech therapy and OT. With that being said though it is frustrating when as parents who have no education in autism, speech therapy, occupational therapy, etc have done more for him then people who are coming into my home every week and getting paid almost $200 an hour!

It is also so incredibly frustrating when the one person who has constantly been in my ear nagging and making comments about how Aiden doesn’t have autism because he is making too much progress, his food allergies are the problem, she has never seen anyone like Aiden have autism … the list of reasons could go on forever. Well she wasn’t at this meeting because she is leaving on vacation tomorrow. Really?! You knew about this meeting for WEEKS and then less then an hour before the meeting you decide that you can’t make it because tomorrow you are going on vacation! Cop out. I would have loved to see her face and hear her reaction when every other professional [not a general social worker] who has worked with my son not just read a report about him … be told that he does in fact have autism. 

We set Aiden’s goals for the next year & to be honest I am so excited to see all of the progress he is going to make! He has only been to school three times & already doing so well and making so much progress. We could not be happier with how well he is doing!

He will start just before his birthday, so the girl’s first day of school after spring break will be Aiden’s first day of school! So in the same week our sweet little boy will go to his first day of school, ride the bus all by himself and turn 3! I better stock up on kleenex!

Thank you so much to everyone who has supported us through this journey. We can’t thank each one of you enough for your love, support, listening ears when we were beyond frustrated & feeling so helpless. Thank you for each supportive phone call, tweet, email & facebook message.

This may be a crazy, busy life but it’s our life & I wouldn’t change anything about it!