Monday, June 3, 2013

Just because he doesn't speak

There is no doubt that autism is definitely a spectrum disorder. Just look at my kids to see how much of a spectrum disorder autism is.

(For the record, I hate the words disorder, condition, disability, etc. because they are just so negative but they are the ones associated with this THING so I have to use them - but just to be clear, I hate them - okay, end tangent)

Princess is 11. She was diagnosed with PDD-NOS when she was between 4 & 5 years old. She is a very smart child with an amazing thought process. She is completely verbal but has difficulty with social situations. She gets anxiety and panic attacks at times. She is emotionally fragile and any little thing can set her off into either a state of tears or anger. But she is also the best big sister around and oldest child. She is so attentive to the needs of her siblings even when she doesn't want to be. Yes, there are times where she will go off and get aggressive but she's learning on how to control that. Her expressiveness about her emotions is her difficulty as she prefers to lock herself in her own mind and not want to talk about it. We are working on this and hopefully can break her through of it. She is silly and loves to laugh and heck, she can sing! She broke out of her shell and sang at her local open mic night at school this year.

Bug is 10 and high functioning. He is social and loves to be around people but yet he does not act like your typical 10 year old (Another note - what is typical?). He is obsessed with dinosaurs and dragons and those weird card game characters that I have no idea who they are but somehow he does even though we do not buy them for him. He is so obsessed that he can talk your ears off about the differences between dinosaurs and the periods they lived in. He can tell you which dinosaurs were the strongest and even their scientific names. And don't even get me started on his drawing abilities! He is amazing!! He can just take a whole sketch pad and draw the most incredible images. See, here are some examples:

Buddy is 8 and he is moderately functioning. By this I mean he has expressive language and receptive language but they are not on the same level. He can express his wants and needs but sometimes not in the way that he wants to. He gets very frustrated very easily and can have a very aggressive blow-out to the point of throwing, hitting, cursing, biting, etc. He can understand what we say and what is expected of him but processing it sometimes is hard because he has such a difficulty expressing himself that he goes into full meltdown mode. He also has sensory issues with sound and movement. Don't try taking him into an elevator, that is just the end of the world for him. But he is a love-bug. He is my love-bug. He loves hugs and kisses and seeks the attention of others for recognition but yet he prefers to be alone and do things alone. He can write better than most handwriting worksheets illustrate. He walks around with his magna-doodle and is always writing letters or phonics sounds. Heck, he began writing words and sentences at age 3! He would hear a word or phrase and suddenly he was writing it.

Monkey is 6 and he too is moderately functioning. His expressive language is developing. He tries to get his point across but his sentences have words and phrases but not always can you understand what he is trying to say because he throws some mumbles or gibberish in between as fillers. But he's trying. He also has sensory issues with sound but not as severe. He has issues with his fine motor skills and simple tasks like writing or drawing but he's getting better. He still tip toe walks and rocks in the car. He hops and he flaps and he laughs with such excitement and love. He always has to have something in his hands and goes a mile a minute. He gets distracted very easily and is prone to wandering and eloping. He can understand very well and sometimes uses his cuteness to his advantage if he is not getting his way. Other times its meltdown city because he cannot seem to grasp social cues and his receptive language is not as good as we'd like it to be. He has difficulty understanding some simple concepts where as other times he can understand more complex ones. It's the luck of the draw. But he too is a cuddle bug and loves tickles and tight hugs and raspberries on his belly. He can fall asleep to soft tickles on his back.

Baby Girl is going to be 5 in October and she is just - well, a spit fire! She was diagnosed with developmental delays because she was in physical therapy since she was about wow, 2 months old. She had not only severe low muscle tone but also her neck muscles were so tight that she had difficulty keeping her head straight. She had some language delays and even some sensory issues with touch and the added tip toe walking and W-sitting. If you were to look at her now you would never know she had those issues. She is just a dynamic child with so much energy and happiness and smiles and personality and everything a little girl is and more! She's not afraid to play rough with her brothers and be just a girl all at the same time. She is very close to Buddy even though sometimes it doesn't seem that way. I still remember them laughing together when she was first sitting up in her play pen. He would climb in there to be with her - they are inseperable and at the same time can fight like the worst of enemies. She is still having some gross motor issues and is constantly being looked at but I think she'll be just fine.

As you can see, there is one child missing. Silly.

And the reason why I saved Silly for last is because well, he's just, my Silly and he is my enigma, but in a good way. You see, he is 9 but low-functioning. He only talks when he needs to for food, help with the computer and that's about it. And even then, he prefers to gesture or have you try and figure out what he needs before he will use his words. He needs to be reminded to go to the restroom because he won't tell you he needs to go and if he does not know where the restroom is or is too distracted or engrossed in what he is doing, he will go right where he is standing. He also has severe oral sensory issues. Everything goes in his mouth and I mean EVERYTHING! He is picky about what he eats in terms of food but yet I have found string, fuzz, and paper in his stool. I'm worried he might be developing Pica. He giggles and shrieks, flaps and  tip toe walks. Spins and rocks and hits his head or others when frustrated. He cries at random moments and determining the cause is very difficult. But a lot of the times he is on the computer playing educational games and laughing and learning. He loves and he hugs. He comes to you just to sit on your lap and be held like a baby or he will say "Hugs" when he wants his hugs - he'll ask me, his siblings, his teachers...he's just another of my love bugs. But again, he doesn't talk. He doesn't socialize. He is my enigma.

I bring this up because often times people talk around him as if he is not there. They think that he can't understand. I think this is further from the truth. Just because a child is non-verbal and/or has difficulty with receptive language does not mean that he is not there and cannot understand you. I worry about what people say around him because he is taking that in and who knows how that is effecting him. Is it a positive impact? Is it a negative impact? This even includes his oldest siblings who unknowingly joke around because, well, they are kids and they don't realize it. This breaks my heart. For all we know he is taking everything in and that could trigger is crying spells or his frustration and melt downs. I look at my son and I wonder what he is thinking all the time. I wonder what goes on while he has those blank stares at times (He has had multiple EEGs and so far no seizure activity). He is such an enigma that I just wonder.

I came across this story today written by another blogging autism mommy Joslyn of Stark. Raving. Mad. Mommy. A child who was non-verbal and whose parents were told he would never function normally or speak or pretty much do anything is now seeking his PhD in astrophysics. He is 15 now and verbal. See...

Yeah WOW!

I am not expecting this to be my son. Not by any means. I am not expecting this to be any of my children. But it does mean that they are there. They are listening. To everything that is going on around them.

When I read Joslyn's post I just had the urge to put my connection to it with my children. No child with autism is like the other. But they are still people. They still listen. To what capacity - it doesn't matter. We just have to be cognizant of what we are telling them and talking about around them.

He made an interesting comment in his video though - that he was placed in special ed but it was so "special" in that they weren't teaching him anything. How many of our children are feeling this? But yet he began to learn about those things that we mere "typical" people find as setting the time on our VCRs (when we had to do that before everything was all digital and stuff). He is now a mind of immense talent and thought - why are we limiting our children? Their possibilities are endless!!

Just because he doesn't speak....doesn't mean he can't learn and that he is not there.


  1. Wow, amazing video.

    My son has Aspergers but he's not the "genius smart" kind. Sometimes people ask me that when they find out he has Aspergers. "Oh, is he really smart?" Well, he IS but not in that way.

  2. Stop learning and start thinking. What an amazing concept. Thank you for sharing this video and more about your kids.

  3. This is just awesome.
    You are so right. People hear a diagnosis and automatically throw them to the side. They are humans and they can learn. They just need help and there is absolutely nothing wrong with that. We all need help with things. But these kids? They're amazing and they are strong for trudging through trying to learn as much as they can.
    My nephew has Aspergers and his school system is terrible. He's such a beautiful soul. However, they do have him teach math class which is wonderful..


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