Tuesday, October 1, 2013

It's Not Real Autism

This is going to be a vent post. My blog, my vent. I'm allowed, right? So here goes:

Both my boys are diagnosed with autism. When my oldest was diagnosed, at 26 months, we were told he was severely autistic and probably mentally (intellectually) disabled. We were devastated. Fast forward 10 years, and Coby is doing amazing! He exited from his IEP last years, plays two instruments, has friends, and is a straight A student in gifted classes. Is he still quirky? Sure! Does he still have social conundrums? Absolutely. Does he still have autism? YES.

Enter little bro. I knew Liam was going to be diagnosed with Autism when I was pregnant with him. Just a mother's intuition.  When he was 6 months old I was sure. By the time he was a year old I would have bet my house on it, and he was officially diagnosed right before he turned 3 (though he started therapy much earlier.) He has a host of issues. He's got severe Apraxia, which makes him extremely difficult to understand. In fact, he had no words as of January of this year! Now he's got lots of words but is still hard to understand. He's very rigid in his play, likes to line things up, and is only now developing pretend play skills. He has sensory processing disorder, which in him is manifested by food issues.  He gags on many textures, still needs all of his fruits and veggies pureed, and only has a few foods that he eats consistently. Right along with that, Liam has fine motor issues. He still can't feed himself with a spoon or drink from an open cup, and forget about teeth brushing (from a gagging and a "doing" standpoint.). Oh, I forgot to mention the flapping. When he gets excited sometimes I'm sure he'll fly away! 

BUT, Liam is also very very smart, just like his big brother. He can read probably about 50-60 words at this point, and spell about half of them when given magnetic letters. He knows all his colors, shapes, numbers, etc. He points to what he wants in addition to using words to ask, dances, claps, and loves hugs, kisses, and cuddles. He can work an iPad better than many adults too! And when it's on HIS terms he'll share with you...he's got pretty good joined attention (he'll do something then look at me to make sure I'm looking and to see if I give him a smile, or praise, and will smile in return). 

I could point out many more issues and many more positive traits of both my boys. But I did (do) have a point to all this. There have been many times that parents have looked at my kids, especially Coby, and to my face argued that my son doesn't have autism. I'm not looking for sympathy--far from it, in fact. But I can't deny that my kids have autism. No, their autism isn't as severe as many others', but it doesn't, and shouldn't take away from the fact that as a family we struggled, and still struggle every day. My struggle is my own-and should not be compared to others. We work SO hard to give our kids everything possible to help them succeed, and we are fortunate to have the means to do so. Every parent who has a child with special needs does their best. But when I get on my online forums or FaceBook, and complain that I have had a hard day, or that Liam has had another never-ending tantrum, it gets very frustrating when people look down at me and shrug off my problems because my kids aren't as severe as their kids. My struggles are my own-and I have a right to vent just like anyone else does.

The same goes for bragging on my kids. To some people I'm not allowed to complain, nor am I allowed to brag. I'm not to complain because my "problems" aren't really problems, and I'm not allowed to brag about my kids' accomplishments because it makes others uncomfortable, since their kids maybe don't get good grades or struggle in school. I just can't win. Well--no. That's not true. I CAN win, and I have! I won two amazing boys, with all their struggles and accomplishments, and I won an amazing husband and daddy to my boys who is there for us every step of the way. And those who can't handle that have no place in my life or that of my kids! 


2 comments:

  1. Honestly, I did not know Coby had autism until a very few years ago. With that said, I'm sure you have many struggling days. No matter the struggle, we all have the need to vent. And no matter the accomplishment we all get to BRAG. They are our children and we relish in their accomplishments. Brag away and if someone gives you flack... I think you've got a palm heel for that!

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  2. I have said this before - and I say it again. You are by far one of the best mothers I have seen. It takes a hell lot of guts, love, determination and effort to do what you are doing with your boys - you always had the option of doing nothing and blaming fate. You chose to change their lives for infinitely the better - nothing can compare with this. The kids are your legacy and they will shine.

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