Susan's Blog

Friday, March 13, 2009

Strings Attached

I still torment myself with what I don’t know. I’ll never know, I guess, how Nat feels about living away. I still feel terrible every now and then about it, when I let myself. Today I let myself. I was with him in the afternoon when we took Ben to an appointment, and sometimes when I’m with Nat I feel lonelier than when I’m alone. I’m so sorry to feel that way, but I do. I wish I could always just feel all of his sweet Nat-ness, but today I just couldn’t. I still feel worried that he is sad not to live with us.

At times like these it doesn’t matter all the strides he’s made. Everyone tells me that, and they also point them out, like there’s a big checklist in the sky that is proof that we did The Right Thing.

But my heart doesn’t care about checklists. It just aches for the way things were. I know things have to change, children are supposed to grow up and move out, but some children feel more fragile than others, less ready. But it came upon us, this placement. We had so many terrible times together, with Nat scaring me and with my inability to understand what was bothering him. Some autistic people respond well to keyboards and PECs and stuff, but I truly believe that Nat often does not want to communicate, period. He wants to be unto himself. Well, don’t we all, at times. But the thing is, he just gets so irritable and out of control. He goes from zero to 60 over things that I can’t predict.

He has been so happy and calm these months. Why? He’s ready, says the crowd. The knowing crowd.

But I’m his mother, and I still don’t know. Sometimes it feels like maybe I don’t want to know. Knowing would be a letting go, and that feels like abandonment and I will not do that. That string, that string that he always loved to twirl in the sunlight; that string is tied around my heart and will always be there.


Yes it will and that’s okay.

— added by Sue on Sunday, March 15, 2009 at 5:06 am

You will always be there.

— added by Someone Said on Sunday, March 15, 2009 at 8:11 am

I think one thing to remember, and this is hard, is that we are older than our kids, and there is no guarantee how long we are going to live. Sorry to be morbid, but if he never learned to live apart, what in the world would he do if you both die?

Right now Chuck and I are dealing with his parents who will not take care of themselves anymore. They both need assisted living, but they are fighting it bigtime.

It’s morbid, but Chuck and I say to ourselves after conversations with his mother, we are never going to do this to our children and we need to find a nursing home that will take Charlie, too.

Now, that’s just joking, but the serious problem is and always will be with kids with special needs — what happens if something happens to me? You are preparing him for that and that’s super hard on you.

Keep on and don’t feel bad about feeling bad about this. It’s something that will take time,but he’s turning into a man and he needs these skills.

Take care and feel better, Sue.

PS. We are sending Charlie to a week long sleep away camp this year. I doubt that I would have had the courage without you showing how Nat loved camp.

— added by Jan on Sunday, March 15, 2009 at 9:45 am

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