Monday, September 30, 2013

ABCs of Autism - K

To know, know, know him, is to love, love, love him, and I do, and I do, and I do.

Can you know someone if they never talk to you?  On Survivor or Big Brother, or any of the shows wherein someone votes out someone else, sometimes one says to the other, I had to vote you out because I don't even know you, we've never even talked!  I read this blog about a girl who doesn't talk, her mom is the one who has really inadvertently guided me on communication devices, and she said one time that if her daughter didn't have a communication device, she wouldn't know her at all.  It really struck me because I think I know Anthony and I think he knows me.  His receptive language is always better than I think.  I tell him all the time that I love him and that I will take care of him - that I'm proud of him and that his father and I will always be here to take care of him.  I think he knows that!

He is just starting with the iPad as a communication device and while I am really excited, and I know it will mean a lot for him, I don't feel like I KNOW Anthony better because he can tell me what he wants to eat, or that he wants to watch his favorite video.  I can't say I feel like I know Maria or Veronica better than I do Anthony - I feel I know him really well.  One of the things I always used to say in those IEP meetings with the public school was that I may not know anything about autism, but I know everything about Anthony.

Friday night, I was at work and Mike texted me "call me ASAP".  My phone's battery was almost dead so I tried to use our work phone but THAT didn't work and by the time I went back to my cell phone, Mike was calling me.  He told me he was on his way to the ER with Anthony, he said he had thrown up after his bath and that he couldn't sit up, he couldn't stand up, and that he was, like, listless and drooling.  I left work and drove the hospital, the longest drive of my LIFE.  I was thinking, what could it be?  Did he eat something that poisoned him?  Mike said and I had seen that he was FINE at 5:00, Mike said he ate well, he was climbing on that damned fence, perfectly normal.  I forget what else I thought it could be besides poison but I was convinced that I was just going to find Mike at that hospital, and that he was going to tell me the worst.  I am dramatic by nature, I guess, and I also - I feel like once we got that diagnosis about Anthony, those years of worrying about him have taken a toll on me and that toll is that I'm a crazy person and always convinced he is going to die, that I'm going to lose him.  Anyway.

So Mike texted me when I was still on my way and said they were back in a room, so I thought that was good.  Unless, I thought, Mike just didn't want me to drive off the road with the bad news, but I just put that out of my mind.  He was lying under a blanket when I got there, his temp was around 96 and he was super pale.  They said they were going to do a CT Scan to rule out appendicitis, that his stomach seemed tender.  They also said they were maybe going to do a catheter and I said that it had to be an absolutely last resort thing - UGH I mean, COME ON!  Anyway, they never had to do it because the doctor said he thought he smelled strep on him when he looked at his throat and it was strep.  Isn't that crazy?  I don't know how it happened so fast, but man, it was a giant relief that he could just take five days of antibiotics and be fine.  We are on Day 3 of them now and although it STINKS to give him the medicine, it's the best news we could have gotten.  I was so worried and we were home by 10:00!

Of course he has been a crazed lunatic since, he feels better, I guess.  I wish that he could tell us if his throat hurt, or his stomach, or something, so that we would know better how to help him, and so that we could avoid ER trips like that.  I don't know if this is something that will come with the iPad.  So far, he seems to only request his Wagon Wheel song that he likes so much.  But I'm confident and hopeful that as he uses the device more, he'll come to know that he can tell us anything, not just that he wants to hear that song.  Ha, we KNOW that for sure!

I feel like I know Anthony really well and I hope he feels like he knows me, knows Mike, the girls.  I may have to look harder than other moms but it doesn't feel like it.  As with everything else regarding Anthony, it feels completely normal to me until someone points out that it isn't.

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