That means that it's now World Autism Awareness month. Obviously this means a lot to me. These boys make life interesting and chaotic and worth living every day. Watching them grow and learn and change, and being there to help them do that, is, well, honestly indescribable.
I know a lot of mom bloggers with Autistic children are starting the month off with posts about what Autism looks like. After all, it doesn't have a look. It's not like some disorders where you look at a child and say "That child is Autistic" or "That child has Asperger's".
On a side note, why is it a child IS autistic and a child HAS Asperger's. Why isn't it one or the other? They are both on the same spectrum, have some of the same things going for them. Afterall, if Asperger's weren't called that, these Aspie kids would be considered high functioning autistic. Then they'd go from HAVING to BEING.
Anyway.....what does Autism look like to us? A whole mix of things, that's for sure. You have all of those "classic" autism things with Izzy. You get all of those social oddities and speech repetitions and "little genius" speak from James. But that's not how it looks, that's how they ARE.
I took Izzy to the store with me this afternoon. I needed to pick up some basics for the week and to get some specific stuff for dinner tonight. I don't usually take Izzy with me, he can be hard to manage, but he's getting better. He loves to sit in the cart, but he's too big to do that now, so I made sure to get a cart he couldn't sit in, that removed the issue right there. I put his hands on the handle, which was low enough for him (thankfully he's a bit big for his age) and I guided the cart, while staying close by him.
We walked through the store to where the dairy is. We've been learning signs, thanks to our extensive collection of Signing Time videos. Izzy doesn't speak. Well, that's not quite true. He speaks very little, and what he does say comes across as though he has a mouth full of marbles. Cheese is one of his favorite foods, so we signed cheese as we were picking out shredded mozerella for home made pizza later this week. A little further down, we needed some cottage cheese. Again the cheese sign, and he put the containers in the cart. We needed a gallon of milk (we go through at least 2 a week) so I signed milk and held the door open to the cooler by our kind. Izzy grabbed the gallon and put it in the cart.
Next on the list was chips (Pringles) and Chicago style popcorn. Down the snack aisle we went. I signed chips, and handed Izzy the containers to put in the cart. We found our popcorn, signing it of coarse, and put that in. Next was Daddy's soda. I don't know the sign for soda, so I used juice. I put that in because it's heavy.
We needed hamburger buns for the pulled pork and a loaf of bread (something else we go through quite a bit of each week). I signed bread for both because I don't know the sign for buns. And apples, everyone loves apples (we easily go through 2 3lb bags of them a week).
All through the store Izzy kept his hands on the handle of the cart, only letting go to put food in the cart and to try to sign what we were getting. Looking at him, you couldn't tell that he was autistic. Maybe deaf because of the signs and the fact that he was speaking. While in the check out lane, he let go of the cart to put the groceries on the belt. Then he did his jumping/arm flapping/squealing thing. THEN you *might* have seen him as autistic, if you were familiar with autism.
My point is that the entire trip to the store was a simple task to pretty much anyone, but to Izzy it's not. It's a time full of extreme stimulation where any one thing *could* be the final thing that adds up to being too much for him to handle any more.
Admittedly, Izzy is pretty adaptable. He was upset to begin with when he couldn't ride IN the cart, but he was content with holding onto it. While we walked by the other customers (and it was BUSY because it's Sunday) no one would have seen the autism, they would have seen a mommy and a little boy at the store on a Sunday buying groceries.
That's very true, that's what we were. A mommy and a boy at the store on a Sunday buying groceries. But we were SO much more. My autistic child was able to walk through the store and was learning and not overwhelemed to the point he couldn't handle it. This little boy was trying to communicate with me, and he was watching everyone else too. He was OK with walking down the different aisles and looking at all the foods.
I will say that I made sure to avoid foods that he would REALLY want (like candy, cookies, and cereal). I kept the trip as short as possible. I talked to/with him the entire time. Telling him what I was looking for, what we were getting next. In my way, I was trying to keep him informed so he wouldn't get to feeling lost or overwhelmed with all that was going on. I wanted him to stay focused on what we were doing, why we were there. By doing that, I was hoping that it help him feel secure, even with so much going on around us. I'm happy to report that this time it worked. Maybe next time it won't, but that's just the way it goes sometimes.
Autism doesn't look like anything, unless you are familiar with it. Another mom of an autie may have recognized what I was doing. I know I do. I was in Barnes and Noble one evening with Jenn. There was a mom who was working with her teenage/adult autistic son about picking out the item he wanted. He was having a very hard time narrowing it down, he kept telling her he wanted to get his thing and also that he wanted to go home. She was in line in front of us and ended up stepping out of line so her son could, once again, go back and look at what he had in mind. Some people may have seen a mentally challenged boy. The way he spoke sounded vaguely familiar to Forrest Gump. However, I KNEW. I saw more than the way he spoke. I saw the arm flapping. The frustration that was so clear on his face. I smiled at the woman. I wanted to say something else, but I wasn't sure what. I've had those same evenings with James. Taking him to pick something out and sitting there for 20 minutes while he made up his mind and changed it and made it up again and all the time getting more and more frustrated because it's HARD to take it all in. James is better able to speak than this young man was, but that doesn't make it any easier for him.
I often wonder what autism will look like as these boys get older. How will puberty go for them? What about dating? College? Jobs? These are all so unknown. I know more and more people are dx'd as autistic (or on the spectrum somewhere) every day. It seems like it's almost an epidemic.
I think part of it has to do with how many different things are classified as autism. I think it also has to do with how people are more willing to ask for help with their children and figuring out what is going on with them. I also think it has to do with how our society has moved from being a hard physcial labor all day to one of leisure and sitting and wasted energy. A child like James, about 100 years ago, growing up on a farm would have worked hard from sun up to sun down. He would have been too tired to get too worked up over much of anything. And if he had gotten worked up, more work would have been given to him. As for Izzy, he would have been placed in an institution as being a dumb mute and left to rot. He wouldn't have been given a dx and therapies and help. Neither would have James.
As I sit and look at our society and how it is now, I see the improvments for those with any kind of difficulty. And I see how so many people are still ignorant and unwilling to accept those that are different in any way. I know every person that drives by my house at night wonders why I have blue lights out front instead of the white ones like everyone else on the block. I know that people wonder why I homeschool my kids instead of putting them in the one size fits all institution that's "normal".
My family is different. In more ways than can be seen. I'm OK with this (usually, even I have my days, as does everyone) and I feel like everyone else should be too. Sadly, they often aren't.
We are told that we should accept everyone for all of their differences. The focus of years past has been skin color. In more recent years it's been sexual orientation and even more recently it's been religion. I want to see people get up in arms about acceptance of people are different mentally. Who are challenged by every day things in some way or another. I want to see the parades for their rights. I want to see the issues talked about on daytime shows and on the evening news. I want to see headlines about the fight to ensure that my children have the same rights, the same chances that everyone else gets.
Sadly, they are pushed to the back, beause it makes so many uncomfortable that it's "easier" to do it that way. Sure, we have laws that say we have to do it, but so many people just DON'T do it. Why is that? Why should I have to explain when my child has a tantrum (or runs away as James did once) in the middle of the store that he's autistic. Why shouldn't it be assumed that something MORE than just bad parenting is going on there?
Stop and ask yourself that. Do you hear a child screaming/crying/carrying on in the store/restaraunt/library and automatically think "If that were my kid he wouldn't behave like that"? Did you ever stop to think that no matter what I have done has NOT helped this child calm down and they are now throwing themselves on the floor/running away beause it's just too much for them to handle? Next time, alter what you think. Put yourself in that person's place (admittedly it's usually a woman, a very tired frustrated sad looking woman) and think how YOU would feel if everyone were staring at you and thinking EXACTLY what you are even though there is NOTHING that can be done.
Today was a success with Izzy at the store. Next time might not be or it might be James, who is "too old" to be throwing a tantrum like that. I don't feel that I should have to wear a sign or explain to everyone that he is autistic and can't handle what is going on that day.
All of this to say this....Autism doesn't look like what you think it should. Autism looks like what it is and for every child who is on that spectrum, it looks different. Don't close your mind, or your heart, to what autism is. It affects so many more than you know, the numbers should prove it if nothing else does.