I haven't blogged much lately, probably because I knew that I needed to do this particular blog you are reading and it is not an easy one for me to write. I want to be honest without hurting feelings, and even though Eddie and I are an open book, sometimes things hurt to talk about....not saying that we are not open to talk about them, it just stings a little. Here I go....
Edwin and Tobey have a lot iin common, they are the only boys in a large group of girls, they both wear clothes 3 sizes smaller than they should for their age, they both have great hair and brown eyes that make the girls fall in love. They are both goofy and huge fans of chicken nuggets and mac and cheese, and like every other member of our home they both love the Beatles. And last but not least they are both on the spectrum....and that is where their similarities end.
I can pass off Edwin as "normal" if I bribe him, prepare him and be careful where we are going. Edwin has freinds wherever he goes, and has not been turned away from any activities because he is Autistic. I have never been told that there is no hope for a therapy to work for him, or that things that I want to do to help him would be a waste of time. I have never been kicked out of a restaurant for his behavior, or felt that burn from people staring with him. At the school's field day I heard kids chanting his name when he did the tug of war, I get a real report card and he doesn't have to sit at a special table in the cafeteria. He has a chance to have his own life someday, a job to support himself...who knows? Maybe, a family of his own. There has never been a limit placed on him. I can honestly say that it is an honor to see how much Edwin has grown and changed with all the work and love put into him.
And now Tobey Jude, to be honest it is getting tougher seeing him get bigger, and he still is kinda stuck at this level. It is so hard being told time and time again that he can't do things. I can not change Tobey, no matter how much I have tried to "fix" his speech or stop him from doing all of his "quirks". I have this dream of changing the world, I want him accepted. But I can't.
The other night I was watching Secret Millionaire, and they showed a day program for Autistic adults and I lost it. I don't want that for him, I don't want him to be that guy that you see and it makes you uncomfortable. I want him to live an incredible life, but that is so hard when you are not given a chance. I don't want to just give Tobey a pill to help him with his problem...I want to FIX the problem! I want normal, I crave normal....but it is not going to happen. I would give anything for a note from his teacher saying that he was in trouble for mouthing off, instead of him needing pull-ups and telling me that he is not doing well with his new meds. The other night when I saw that show, it showed me his future and it made me sick to my stomach. Every parent wants to give their child the world, but sometimes it won't make any difference. But, you keep trucking on and looking up if hyperbaric chambers will make a difference, or you you-tube those inspirational videos of people overcoming their medical problems. You try and figure out what you can do to aid them with harnesses, medications, chewy tubes and you try your darnedest to ignore the staring and you put a smile on your face and you keep trucking on.
Side story...We have perpetual food and water dishes for the dogs. Tobey took the tank off the water dish, took it to the sink, filled it, and put it back on the dish. I was so PROUD. Maybe we can get him a chore, and maybe this will be the start of something normal! I left the room to get my camera, and when I got back, Tobey was on all fours next to the cat drinking out of the water dish. :P
Seriously, though, Tobey will never be normal. He will never not be stared at. He will never be on his own.
And, He will always be autistic.
Those last sentences tasted horrible coming out. They have been stuck in my mind and my heart for a while now. I keep avoiding saying or writing or thinking them, hoping that somehow, they would not be true. But, they are.
And, I have to accept that. I have to accept that Tobey is Tobey and the world is the world. And, sometimes the world sucks.
I think that is why I am so passionate about disability ministry and kids with special needs. Special needs kids and adults alike have to try SO MUCH harder than the rest of us. And it is up to us to help them through.
And the problem is not getting any smaller. In fact, it is getting exponentially larger. Recent studies show that autism affects as many as 1 in 88 boys, 1 in 110 kids altogether.
Not to mention Down's Syndrome. Multiple Sclerosis. Emotional disability. Birth Defects.
I want to be able to help all of these kids AND adults to live a great life! A life rich in experience and joy. I want all of them to know that Jesus LOVES them. That is my passion.
I think that's why I get so upset with Tobey. I see him struggle with daily things you and I take for granted. Like talking. Focusing. Learning. Reading. I am sure it kills me more than him to see him struggle with these things. I HATE seeing Edwin have to get his 21 day penicillin shot, all because he did not possess the proper verbiage to communicate that he wasn't feeling well.
Well, I have ranted and raved enough. Until next time. See you later!
