Saturday, April 1, 2017

31 cents worth of Autism

It is the beginning of April! This has become a very important month to our little family because we are foot-loose and fancy free for a whole month to share our crazy, nutty, perfect (ish) life with autism in an effort to make the world around us more aware. Here is the thing, the numbers prove that it is nearly impossible to not know someone with autism. 1 in 62 people have autism and that is just the diagnosed ones. It is more common in boys and approximately 1 in 42 males are diagnosed with some form of ASD (Autism Spectrum Disorder). This is the statistically reality. The real-life reality is that daily our little boy meets people who stop, who stare, who don't understand. I was telling a story the other day about being at one of my other boy's basketball games and I noticed two women turn around and do a double take to Garrett. It took me a few more minutes to realize that G was getting excited and he was expressing his excitement with a humming sound and hand-flapping. In order to redirect him, I handed him a hairband to chew on and placed my hand on his head to help him get his body under better control. A part of me wanted to be offended. A part of me wanted to be sad. Another part remembered how I felt the first time I witnessed G handflap. I'll never forget it because Ryan and I and G were at the Klingberg center and our baby boy was  being evaluated for ASD. Ryan and I had talked about what we would hear and I thought we were ready to hear the words whatever they might be. And then, standing right in front of a two way mirror, my little boy started flapping his hands and jumping. I felt a hurt like never before. That sort of mom feeling that you get when your whole life just changed in an instant. I looked over at my husband and simply said that we just got our diagnosis. Hand flapping is definitive sign of autism. It was like watching my world be permanently tilted and realizing that it would never go back to normal again. We did indeed walk out of that 3 hour torturous eval with our diagnosis and a large packet of information and, even though life would never be the same, my little boy was not one bit different to me. He was the same kid that I carried in. The same kid I had known for every day of his life. He was my G baby. I cried the whole way home. I am crying as I type this. I remember praying. I remember calling my mom and saying, "It's not going to be a secret. G is still G and this is going to be ok." I knew nothing about autism. I was unaware. I may have done a double take a time or two. I may have stared for a moment too long at someone else's child, and now that was my life. It still is my life. The difference is that I am now aware and I am so abundantly blessed by that awareness. I wish I could go back so that Ry and I, and, maybe even Parker and Carter could jump right up there beside G, in front of that two way mirror. We could all stand tall and proud and flap our hands right alongside our G. Now,  we celebrate it. On the good days and the bad days, we know that we have been given a gift we didn't ask for and will never stop unwrapping and discovering. One that we enjoy and embrace and love beyond all reason.

I thought that as a kick off for the month I would give you "31 cents of autism". A couple of months ago, G was being observed by someone who works with us from a program for families with autism. We think of her as our autism angel and feel blessed to live life with her on our team. One thing that Peggy has encouraged and guided us in is trying to help G become more self aware of his autism. If he can recognize and embrace it, then he can deal with it himself more independently and become his own advocate. This can be tough to do though because the whole concept makes no sense to his literal concrete mind. He thinks everyone is just like him. We have attempted to help him with this in many ways including reading some great children's books that explain autism and ASD. These tools help him and we share them with anyone who wants them, especially friends, neighbors, and family. We have really seen more  self-awareness from G in the last couple of months, on more than one occasion, G has said that he might have autism (and that I might too), and he has been ok with that. These are major steps for him and us. On this particular day, our friend Peggy was observing G in his classroom and watching him and another little girl playing a math game that included counting coins. G had noticed Peggy and is very comfortable with her and at some point in the game, he looked up after counting out $0.31 and said, "Yeah, I might have 31 cents worth of autism." Self advocay at its finest! I thought it might be fun to give you all 31 thoughts from G, his brothers, and some of our friends who know and love us. Some are funny. Some are sad. All are honest and real. Life with autism requires those two things. You've gotta be honest and you've gotta be real. So here goes...

1. "Autism is when you feel things in different" - C
2. "One thing that I've noticed about autism is that some kids with it can be really normal, like G. Well, until he starts talking like a TV show!"- P
3. "Autism has different degrees and G is a 2-3 with 1 being no signs and 10 being severe"- K
4 "Autism makes you different from others, like care free, you know like G-man. He can run around in his underwear and not care" - J
5. "Mom, I think you might have a little of that autism"-G
6. "When I see others who are autistic, I want kids to be nice to them. I hate it when kids are mean about that kind of stuff." - P
7. "Some folks, like the Stucks and Hendersons, don't even seem to notice. That's a good thing about some people." - C
8. "G looks at life with different eyes. Like we can be seeing the some show but he doesn't even notice it."- P
9. "Autism makes me really good at some things."-G
10. "Kids with autism have a different mindset. They see things differently"-H
11. " The thing I hate the most is when people stare at G." - C
12. "Autism makes some kids see things different and they may tell you no if you ask them to play."-J
13. "It can be a bit socially awkward at times, but we just roll with it." - P
14. "Autism is like OCD." - K
15. "G has autism. I think he is fun loving and playful, nice and very creative. He isn't afraid of what people think of him." - J
16. G is a normal boy. One of his friends -R
17. "I love the fun of G, the nerf wars and being crazy. He has a lot of fun." - P
18. "Having a brother with autism makes us good protectors of G and of all people"- C
19. "It's hard work to get G to listen.  Sometimes it's hard to control him because he can get angry easily.  Sometimes he is very silly just like me." - L
20. " This autism is going to help me win the war against this sickness." - G (when he had strep)
21. "G gets so excited about things, like flapping or making sounds, that sometimes I find myself getting excited and wanting to jump around too!" - C
22. "G isn't really different because I moan too and I am OCD about my nerf guns." - R
23. "We do have one of the coolest houses"- C (read on to find out why!)
24. "For real, swings, gorilla gym, giant bean bags, sand and rice boxes, and all of it INDOORS!" -P
25. "G has autism but he's awesome, creative, and I love having nerf wars and missions with him" - J
26. "G is not like anyone else. He is his own person.  It's like he has his own world." - H
27.  When asked if there is anything odd that G does- "He moans sometimes". - K
28. "A pro of having a brother with autism is that it makes me notice kids with differences. Even like a kid whose mom passed away or a girl who wears glasses or a boy who is a really good builder, and I am cool with differences. I notice them and I think it makes them cool." -C
29. "G doesn't seem to care what anyone else is doing or saying.  I think that makes him special because things that might bother us don't always bother him." - H
30. "I can't imagine our life without autism. G is just G to us." - C
31. "There are pro and cons to life with autism but the pros way out weigh the cons." - P

That folks is our 31cents worth of autism! Stay tuned for an entire month of what we affectionately call "G-isms"!

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