Susan's Blog

Thursday, November 13, 2008

The Post-22 Sword of Damocles

I still do not know what to do about my missing Nat so much. This feeling makes me want to bring him home, take him out of there, even though they seem to love him and care for him well. It has nothing to do with them. It is about me, and this unresolved pain. I can’t stand it. It still flares up, every single day. Planning his birthday is especially hard. Thinking about Chanukah, and what to do for the eight days. Wanting him home, then seeing him just lie around on the couch when he’s here.

Sometimes I do not know where I end and Nat begins. I cried to Ned last night, lying on his shoulder, the best bed on earth. “I want him back, I was wrong to send him away,” I said. “Can’t I have him back? We promised each other that if one of us was unsure…”
Ned waited a moment, as he does, measuring his words carefully. “We can,” he said at last, “but I don’t think we should. He’s doing really well there.” Then: “Does he seem sad to you?”

This made me cry some more. My nose was flooding, disgusting. I think Max and Hannah could hear me down the hall. “No,” I said. But it did not make a difference. I just kept crying. “I shouldn’t have done it,” I said. “Why does it have to be this way?” It. It was this way, meaning, there is no good solution. It means that there were times when Nat really scared me, and his brothers. There was a time, a year ago, when he could not be calmed, he was anxious all the time, and he would fly into rages, running out of the house, pinching us, scratching. As if he were telling us he could not stand to be here, either, with our unpredictability, our inability to understand him, our noises, our lights, the stupid weather, sudden changes of plans. What could I do? I could not handle it. I can only do schedule boards and penny rewards and calendars and stay organized for so long. I’m naturally sloppy, changeable. I could not help him. Why did it have to be that way?

And then even when things improved in Nat’s attitude, there was the Sword of Damocles, the post-22, the end of childhood to consider, ready to drop upon us. There was the matter of the state’s cruel radar screen. The bureaucracy that determines who gets funding as an adult and who does not. The legend that goes around, that if your kid is in residential, he is more likely to get housing and supports as an adult.

It’s good for him, it’s good for him. Meanwhile I hear from others I know, adult autistics, about how they hated residential, how they hate Risperadal, ABA, all of these approaches we take in the name of helping our children. And I get so scared that once again I am on the wrong path. I had this child whom I love more than my own life, yes, that is true, I have to say that. And I feel sometimes like I have failed him because there are no real answers, there is no one I trust except Ned, and he’s telling me to hold on. So together maybe we’ll duck the Sword and the five of us will get out of this alive. I hope.


My heart aches for you. Your words are so clear and the pictures you paint just hurt my heart sometimes, you are so honest and raw. Being a mother can be so very painful. Sending you hugs. Nance in texas

— added by Anonymous on Thursday, November 13, 2008 at 7:53 pm

I know you’re hurting like more than anything over this.

Ned’s right about him doing well there. I mean, phone conversations! Hold on to them.

Trying to add brevity…

“Wanting him home, then seeing him just lie around on the couch when he’s here.”

Sounds like a Mom and her kid home from college 🙂

Hang in there.

— added by Someone Said on Friday, November 14, 2008 at 7:32 am

I think it is important to express yourself through your posts and if someone doesn’t like what they hear or read then not to read the blog.

I am going through the very same issues with my daughter (as you know) and it hasn’t been very long. When I write posts in my blog it helps me deal and come to grips with my life and decisions—namely, Meghan and residential.

My daughter was so much like your son—her behaviors were so extreme and hard to predict that I really had no choice, but knew that it was the best thing to do for her—education, therapy, and behavior plan-wise. I think I once wrote in a blog that I love her enough to help her in this way, it’s not about me it’s about her and her future.

I also know that Meghan is not crying and screaming to come home and that is a good thing. I will never forget the horrible day that she entered the school—I was very brave because I needed to be, but inside I was fighting a war. I cry just writing about it, including now, but I know that it is the best decision for our whole family not just for Meghan. You are right; it is for their future and getting into the better programs. But they know we love them.

— added by Holly Nappi Collins on Friday, November 14, 2008 at 9:45 am

Hang tough Susan, because it’s the best for your family. I am your friend, and the brutal truth is that Nat should not come home to mend your heart. Your feelings are honest and understandable, but Nat is learning and spreading his wings outside your loving hearth, and based on your descriptions (that sound oh-so-familiar) of life a year ago, that’s a miracle.

Can you get together more with Nat at his house? Seeing him at your home reinforces the void when he leaves, but maybe seeing your young man in his new environment might reinforce all the things he’s learning.

You and Ned have done such a wonderful job with all your boys, I have tremendous respect for you both. It gives me hope that Jared will achieve even more great things in the years to come. Hug your boys and be proud. Lisa

— added by Anonymous on Friday, November 14, 2008 at 10:32 am

I think you are doing the right thing. I hate watching you struggle, and can only imagine how you must feel. However, from an outsider’s point of view, I think you are doing the right thing. You have given him wings. You are letting him fly. It hurts, but it’s what you all (all 5 of you) need, and despite all the pain, it HAS been a good thing.

I agree with ned. Just hang on. Day by day, minute by minute, it will get better.

— added by ASDmomNC on Friday, November 14, 2008 at 10:37 am

At least he is at The May rather than NECC. The May sounds like they actually care about the children. Looking at documentation that is published out there, NECC kicks out those out who “fail” in their residential and refers them over to Judge Rotenberg. Unbelievably disgusting if you ask me.

— added by Anonymous on Friday, November 14, 2008 at 2:14 pm

Be thankful they don’t throw the kids to the lions like this place does. There is no excuse for this in my opinion. No kid should end up at Rotenberg.

Summary of Cases Presented in this Paper
Students who Attended the New England Center For Children (NECC), Southboro,
1. J.B. attended NECC between 1997 and 2005, between the ages of 7 and 15. In
March 2005, NECC referred him to JRC. His Discharge Summary explained the
reason: “At this point, behavior-control medication and treatment approaches
based on positive reinforcement have been generally unsuccessful in producing
long-lasting decreases in J.B.’s behavior. This suggests that J.B. may require
alternative interventions than those normally used at NECC, for example,
mechanical restraint or contingent aversive stimulation.” He enrolled in JRC,
directly from NECC, in April 2005 where he has been successfully treated ever
since. Skip to the complete account.
2. C.M. attended NECC between 1997 and 2001, between the ages of 10 and 14. On
October 25, 2001 he was referred by NECC to JRC because, as one of his IEP
documents states, “his behavioral issues are becoming more significant and
putting his safety at risk…NECC have given the district until Feb 1, 2002 to
transition C.M. to another placement.” Another IEP document records the fact
that “NECC has requested that C.M. transition to another program that can better
address his significant behaviors.” He entered JRC in 2001 and has been treated
successfully there ever since. Skip to the complete account
3. A.M. attended NECC between 2000 and 2003 when he was 14-17 years old. A
referral letter to JRC from the Boston Public Schools says. “A.M. currently
attends the New England Center for Children. As a result of his last IEP meeting
it was decided that a more appropriate residential placement be found to address
A.M.’s complex needs.” A.M. enrolled in JRC in 2003 has been successfully
treated there ever since. Skip to the complete account.

— added by Anonymous on Friday, November 14, 2008 at 2:57 pm

I totally agree with whomever wrote “Hang tough Susan, because it’s the best for your family. I am your friend, and the brutal truth is that Nat should not come home to mend your heart.”

I can’t help but think that if you did bring him home, you would lament that he wasn’t thriving like he would be in The House.

It appears that everyone agrees that Nat is where Nat should be. I know that doesn’t make it easier for you, but sometimes a Mommy has go to do what a Mommy has got to do. — Cathy in CT

— added by Anonymous on Saturday, November 15, 2008 at 7:45 am

I wonder. . . . which is a way of saying I have a thought experiment. What if Max and Nat’s ages were reversed?

I suspect you would (understandably) feel angst about your oldest leaving the nest. But your support group and experience would be much broader – many families deal with this stress every year.

Nat isn’t typical. You don’t have the same assurances that other families have that it will all work out.

So that’s my thought question. How much of your angst is Nat-related, and how much is bird-leaving-the-nest related? I trust your instincts more on the first question, and a bit less on the second question.

Back to the thought experiment. I wonder, if you’d already had a bird leave the next, how would you be dealing with Nat’s new house? I’m sure you’d be stressed, but how much, and in what way?

I’m posing questions. I don’t pretend to have the answer.


— added by Dan Dunn on Sunday, November 16, 2008 at 5:55 pm

I saw this in a Mother Jone’s article. Clearly written by someone who used to work at NECC. At least you can be sure that you picked the right residential placement. These other two places sound sickening.

Both Gina Green and Brian Iwata are hypocrites because they both have been affiliated with the New England Center for Children (NECC), which is even worse than the J. Rotenberg Center (JRC). At NECC they have a staff-intensive unit for children with self injury – the problem is that most intakes into the staff intensive unit come from other least restrictive units at NECC. That means that they are the ones reinforcing self-injury. Then after they have built up a huge history of reinforcement for these behaviors over the years, and the kids become bigger and the behaviors less manageable, who do they call to take these children? – The Judge Rotenberg Center.
Posted by:VinnieSeptember 8, 2007 1:50:12 PMRespond ^

— added by Anonymous on Monday, November 17, 2008 at 12:25 pm

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