Friday, October 19, 2012


I read this book a long time ago, have I ever said?  It was by .. Sue Miller, I think and I always think it was We are the Mulvaneys but it's not, but it's like that.  It's about a family with three or four kids in Chicago and the couple gets divorced and their one son has autism.  He is pretty non verbal and I remember the mom sings a song to him to the tune of Oh Danny Boy, called Oh Randall Boy.  Anyways, he is 1970's autistic, you know, the dad wants him to go live in a home and the mom doesn't want him to.  Eventually he goes and lives in a home and he gets hit by a car while on an outing and he dies.

So I always think about that book and that character and I always think I don't want Anthony to get HIT BY A CAR.  I mean, it's crazy, of course, that that would happen to Anthony because it happened to some character in a book but it has stayed with me and I think about it all the time.

Lately I have been putting Felicity in some clothes of Anthony's and it's killing me.  I was changing her into his outfit today and I was telling her it used to be Anthony's and I got all upset.  I feel like he's gone, like I am grieving some baby who died or something and he is RIGHT HERE.  It occurred to me today that I am grieving, and while I am not a person who buys into the whole 'where did my son go when the autism came and got him' type of thinking, I guess I am grieving the loss of how I thought it was all going to go.

We had such a great day yesterday, Anthony's speech therapist wrote  and said he is moving to the next stage of PECS which is when he comes home with his book and we use it here so that's exciting.  I mean, I was really excited!  And then when I went to pick him up his therapist seemed sort of sad and she said that they had had a bad afternoon, that he was grabbing at her and yelling.  Then he did the same thing to Mike and then me and I was so scared.  He is strong and he is only SEVEN and ay yi yi, I do not want him to beat me up!  I can't take it!  I can barely take it when Felicity pinches me and that's by mistake.

I mean, I know he's not going to do that.  Logically I know that it's just a phase, a bump.  He is doing so great with these PECS, I mean, I think better than anyone anticipated.  I'm sure that doesn't come without some behaviors, if I know Anthony.

Last night I was doing some google searches on autism and grabbing and I found this article about a teacher in Florida who got fired for grinding a shoe into an autistic child's face because he wasn't listening to her.  Can you imagine?  Mike and I were talking this week about how people who work at group homes are paid like barely over minimum wage and they are the ones taking care of people like Anthony.  It makes him want to live forever, Mike said, and I agree.

So even though I try to take things one day at a time and sometimes one HOUR at a time and even though I am grateful to God that I have Anthony and that we all have Anthony, some days are very hard.  And today is one of them.


Stimey said...

I think all those unknowns feel so scary. I'm sorry you're having a tough time right now. Love to you.

Doing My Best said...

This is a hard thing, but you are doing GREAT! You will keep doing this one minute, one hour, one day at a time. YOU CAN DO THIS! (hugs)

Anonymous said...

Sending hugs and prayers. Doesn't seem like enough, but i hope it helps. I understand this blog and my heart goes out to you guys. It's not the same, but remember when you helped me "grieve" for Christian? I'll never forget it, and hope you never forget I am here for you..ALWAYS! xoxoxo to the kids :) Love and miss you~ Aly