Susan's Blog

Sunday, July 20, 2008

Stayin’ Alive

When I was little, and I was going off somewhere with a friend or something, my dad sometimes used to say, “Oh, stay home with me and be my pet!” I would laugh, because we both knew that was ridiculous. I tried to picture me, a puppy or something. I wasn’t a pet! I was a kid with a life to live. But Daddy always joked about everything, even about the things that made him a little sad. I mean, he was happy to see that I had a life of my own, but he missed me, too.

I was dozing off today, tired from my run and wanting to close off my head a little. I have had this big, oppressive ache about Nat that just doesn’t go away. A heart migraine.

As my eyes closed, the thought came to me: You don’t have to do it. You can keep him home with you. I remembered how I wanted to do that when he was three and everyone was telling me he needed school, and a full day, full year at that. I wanted to keep him home, to keep him away from this stupid, demanding world. I wanted to teach him everything myself. I didn’t want to deal with special education laws, bureaucracies, methodologies, professionals. I didn’t want to deal with my fears and sadness. I especially did not want to deal with his difficulties with the world.

Ned was the cool washcloth on my feverish brow. Or the splash of cold water in the face. “You can’t do that,” he said. “You would never be able to be his teacher. It’s a huge job and you’re tired as it is.” Something like that. I sent Nat to school, and got used to it. So did Nat. He never once expressed anything negative about going to school. Not once.

All day today I have felt the secret relief of knowing how I can sabotage everyone’s plans. If I don’t like it, he doesn’t have to go. And if he doesn’t like it, he can just come home. I don’t care what anyone says or thinks. I am Mommy, hear me roar.

As I was driving Nat home from social group, where he attended a production of Bye, Bye Birdie, I suddenly realized that I did not know what Nat himself thinks about his move-out, now that he knows. My heart felt like it was splitting in two as I considered the fact that I really had to find out what he was feeling, now that he had a beautiful calendar and booklet that his teacher had made. And I was afraid of what the answer might be. But I had to know. I had to hear him say he didn’t want to go (“No X House!) (name changed to protect the innocent) so that I could comfort him, and me.

“Nat,” I said, turning down the radio, “do you want to go to X House?”

Nat stared straight ahead, and said slowly, “Ye-es.”

I have my own system of testing the accuracy of Nat’s responses — he has been known to default to “yes,” just to get people to stop asking him questions. I have to mix up the question and ask it again in a different way. Sometimes several times if I’m not sure.

“Nat, are you happy to go to X House, or — “

“Happy,” he interrupted.

“Happy or sad you’re going to X House?” I repeated.

“You happy you going.”

“Oh!” I said. I was about to say something wise and comforting, but when I looked at him he was smiling. I turned up the BeeGee’s Stayin’ Alive, a song I’ve always hated, but which he seemed to be enjoying, and felt my pain shrink down so that now it fit only me.


I am sitting here in front of my computer, staring at the monitor, awashed with a rollercoaster of emotions on your posts on Nat’s imminent departure from home. My mother’s heart aches too, fearful of that one day in the future when my son will have to open his wings and soar, yet strangely, I feel my heart puff like a balloon with pride at all that you dare dream is possible for your son.

I wish you many days of grace and peace. Your love for Nat echoes keenly through these pages, and I am blessed to witness this love in action always.


— added by Kittymama on Monday, July 21, 2008 at 4:07 am

It can be wrenching to watch your eldest child leave but necessary so they can fly!

It would seem you are one of the fortunate few that your son is funded for residential services under age 22. This is a gift. The brass ring.

Many people older than your son are living at home with aging parents and no residential funding.

— added by Anonymous on Monday, July 21, 2008 at 10:00 am


But the funding will stop after age 22. What’s a parent to do then?

— added by Anonymous on Monday, July 21, 2008 at 12:24 pm

I’ll tell you what this parent is going to do: everything I possibly can to secure Nat housing and independent living supports. I am making connections right now with other parents in similar circumstances and who knows? Maybe we’ll create out own group home for our kids!

— added by Susan Senator on Monday, July 21, 2008 at 12:27 pm

And what is the housing like after age 22 in Mass.? Who runs it and staffs it? It is scary thinking of what staffing would be like for the adults.

— added by Anonymous on Monday, July 21, 2008 at 12:42 pm

I suppose the staffing is scary in some places; like everything else, it depends on where you look. Nat’s school runs some adult homes. They’re probably well-run, but I’d have to check it out when the time comes.

I’m not going to pretend there are adequate services or funds — there aren’t. It is scary. But right now I’m dealing with my own version of scariness, just in sending Nat off to school housing.

— added by Susan Senator on Monday, July 21, 2008 at 12:48 pm

I am the first anon to respond here. Does your son have a 688 plan for when he turns 22? It would seem DMR would assume his placement at that point.

— added by Anonymous on Monday, July 21, 2008 at 1:16 pm

Yes, we started the whole 688 process just around when Nat turned 18. We’ve met with the DMR and we’ve made eligibility for services. We are going to file for SSI soon. And that’s about all we can do for now, but I’ll stay on top of it!

— added by Susan Senator on Monday, July 21, 2008 at 2:19 pm

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