Monday, July 11, 2011

Do I really want a cog in the wheel?

Noah is so many things. He is bright, intense, funny, sweet, caring, sensitive and intuitive. He has impeccable judge of character, a trait he has possessed since he was an infant. He can focus on and notice the smallest of details. He is a loving boy... one who is suggested might have autism. 

Seeing that in writing sucks. 

We have known for a while now that Noah struggles with his verbal development. It has gotten to the point where he gets very frustrated in his inability to communicate what it is that he is thinking or what it is that he wants. And this child THINKS and WANTS a lot of things throughout the day. Because of this he can be very challenging to deal with at times. I have created an environment where he does not have to hear 'no' and where he can be as independent as he wants to avoid conflict. I still try to gently guide him and discipline him when needed, but for the most part my day completely revolves around him and trying to figure out his wants and needs when he is unable to tell me with words himself what they are. 

Have I mentioned I am pregnant? My patience is close to nil these days. I decided to have Noah evaluated, thinking maybe there was something wrong with his hearing and that was why he was having a hard time developing his verbal muscles. Long story short, the team that evaluated Noah felt that he showed some characteristics of a child with Autism. Upon hearing this, I was a wreck. Sad, helpless, hopeless, lost... 

A child psychologist administered the test. She was on the floor with him, pulling out various toys and asking him to do certain things. Some of them he did willingly but others he did not. In fact, he would just completely ignore her if he did not want to do something. This is not new behavior from Noah, he does the same thing with me. According to her, it is unusual for a child of his age to not do something that is asked of him if he has the skills to do it. Something in his brain is keeping him from putting the blocks back into a box when asked. Of course Noah possesses the skills to put a freaking block inside a large box; the child could thread a needle if he put his mind to it. I swear he just didn't do it because he thought it was boring. 

So because Noah would not do certain things that were asked of him during the evaluation, and because of his verbal delay, they felt that he would benefit from some therapies. I am all for that, don't get me wrong. And I don't mean to sound like one of those parents who is all 'Not my child!', but seriously... they don't know my child. 

I agree that Noah has unique behaviors for his age. For example, he can focus on one task/toy for a very long time. During the evaluation they gave him a baby doll. Mind you, my child is loving and gentle and very much enjoys imaginative play. He held that doll and focused on her hands, which were locked in a fist, I think trying to figure out why they would not open (because hands should be able to open and close). Recently I have been telling him that gently holding hands is a way to show love (love love hands, is what we call it) to prepare him for being gentle with his sister. He loves his new baby cousin Molly who is 11 weeks old, but does not know his own strength, just like any other 2.5 year old. So when he gets overwhelmed with the feeling of wanting to hug on his cousin, I say 'love love hands' and he gently holds her hand. ANYWAY, I think he was trying to do that with this doll. And he was putting her on his blanket, feeding her... he played with her for about 10 minutes. 

But right after giving him the doll the evaluator asked him to put it down and do something else with a new toy. He ignored her and kept going about his business with the doll. She brought out another toy. Same deal. He would not transition to a new task until he was good and ready. And if you tried to MAKE him he would throw a mini-tantrum. 

This, apparently, is unusual behavior. He should be able to switch from one task to another when asked without throwing a tantrum. 

Now I agree that he should not throw tantrums. But I love his ability to focus. I love that he gets an idea in his head and wants to see it through. Why would I want to change that? So he can 'fit in with society' and the mainstream school system? Yes, it is difficult to deal with when he is TWO but I think this character trait will serve him well as an adult. 

There are so many quirks, too many to write in one post, that make Noah who he is. I have a very hard time putting a label of 'autistic' on him because of these quirks. The whole team that met Noah agrees that he is brilliant and, if autistic, very high-functioning. But they all kept coming back to the same thing... some of his behaviors were unusual. And again I ask, why is this bad? Answer: Not bad, but difficult to be successful in the school system when time comes. So we have to work on these behaviors now while he is still young so that when it is time to join the mainstream school system, he will fit in and be a successful cog in the wheel. 

No thanks to the cog part.

Bring on the unique traits, pleaseandthankyou. BUT... I am all for learning, as a parent, how Noah learns best so I can be the best teacher he needs. I do think that he and I would BOTH benefit from working with an occupational therapist to learn how to deal with his tantrums and to work on his communication skills. But really, over my dead body will I let someone change Noah's personality and quirks. It is my job as his parent to take the things that make him uniquely Noah and help him to be the best he can be WITH those traits. 

So I am not sure how comfortable I am with saying 'I have a child with autism'. I certainly have a unique child (I swear if they call him or his behavior unusual again...) but I love his uniqueness. And I don't want this life to be a struggle for my child. So we will work with certain therapists and see how it goes. And I no longer feel hopeless... I have nothing but hope for my child and his future. We just have to get past toddlerhood so he can go ahead and cure cancer already, because clearly, I think my child is brilliant.  

DISCLAIMER: The folks from Early Intervention who did the evaluation were amazing. The coordinator who will be working with us throughout the whole process is very understanding and sweet... NONE of the above has anything to do with their system or the legitimacy of their work. However I will say that I feel autism is very over diagnosed and that those who work closely in the field get tunnel vision when dealing with someone who is outside of the 'norm'. 

2 comments:

  1. thanks for sharing, brynna.. i hear ya. my 3yo would not have put up the blocks either.. :) i think rebellion/independence/the love of discovery is also a huge part of the toddler personality. you know Noah better than anyone. just keep on loving the little dude, praying for him, and being sensitive to him. :) you'll know what he needs when he needs it.. why else would God choose you to be his mommy??? love you!! ali

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  2. Thank you for writing this. I can't imagine what you went through putting it together.

    All I keep thinking with regards to the mainstream school system, etc., is a story that Sir Ken Robinson relays in a TED talk about a little girl who won't sit still in class, who could have been classified and labeled any number of ways. But a counselor/educator watched her and told her parents she wasn't a sit-still learner, she needed to move. She was a dancer. That girl went on to choreograph Cats and other Andrew Lloyd Weber shows and is successful beyond belief. In large part because they didn't try to jam a square peg into a round label.

    It sounds like you have a great attitude and that you all will do fine. I look forward to hearing more great Noah stories :)

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