Susan's Blog

Saturday, June 4, 2011

Broccoli Days

So we learned yesterday that Nat has been designated a Priority One by the DDS (Dept. of Developmental Services) which means that in all likelihood, the state will fund an adult residential placement with 24/7 care.  Nat, in the macabre irony of the world of disability, is lucky that he is so severely disabled.  He will have a home and caregivers for now and especially for when we are no longer able to do it.  What will his home be?  That is still the question.  If I can get all the pieces to come together in time for his transition out of school in November, then he can live in my envisioned group home, the one I’ve been working on for nearly a year.  But if that doesn’t work, there are a few back-up options, like another group home that is just beginning in a nearby town, or one that is already up-and-running.

That is excellent news.  As the DDS Liaison put it, “He will be safe and fed.”  Basic needs met.  But the salad days of public education entitlements are ending, the days of fully-scheduled, mind developing endeavors, the era of the intricate skill-heavy IEP, finit.

But this post is not about that.  I’ve been thinking about Max these days.  My feelings with regard to Little, Little (his very first nickname, which even then was said with irony, my 100th percentile baby boy).  The other day I brought up something at dinner that we’d talked about months ago, about NYU and the Tisch School, where he’ll be going.  When I started asking him about it, he said, “I don’t want to talk about it.”

I said, “But is there something — ”

“I just don’t want to talk about it.”  His face was red, and very sharply outlined, which is how he looks when he’s mad.  I felt this mild remonstration like a fingerpoke in my belly, and my face felt hot.  Here was Max, my gentle giant, setting a boundary with me in a really direct way.  Pretty rare occurrence.

The rest of dinner I ate quietly, feeling anxious that it would happen again, that anything I said would be snapped at.  And I wouldn’t know when it would happen or why.  I felt sad.

When I woke up this morning, it all didn’t seem so bad.  Max has to do this.  He and I have a great relationship, but we are still mother and son, and so this is how a happy-well-adjusted teenage son breaks away from a loving, supportive mother.  No matter how great the relationship, it has to happen.  Max is setting the boundaries, and I have to stand behind them.

I got to thinking about how different it is with Nat.  I have to set Nat’s boundaries for him, and the way I do that is by having him not come home several weekends a month.  I am doing that to teach him independence.  I have to do it for him, because he cannot do this on his own.

I think that’s why it has been so hard for me.  It is hard enough having Max changing the rules and dynamics between us.  But with Nat, I have to do this difficult and alien thing myself.  I have to make myself do it, the way I sometimes force myself to eat broccoli.  It tastes terrible, sometimes makes me almost vomit, but it is the healthy thing to do.

He’s not here this weekend, can you tell?


Don’t worry about Max. I went 1.5hrs from home to Univ, could have gone farther and got accepted at those programs. BUT, it was far enough I could be without my Mother watching and close enough when something went wrong…. I had help. He’ll be fine. He’ll screw things up, but he’ll either sort them out himself or ask for help.

Congrats about Nat’s placement. I appreciate the “it’s great he qualifies but…” part. There are days I wonder with the younger by teaching as much as I do if I’m actually doing more harm in the long term than helping.

Hope you’re enjoying your weekend.

— added by farmwifetwo on Sunday, June 5, 2011 at 8:29 am

“the days of fully-scheduled, mind developing endeavors, the era of the intricate skill-heavy IEP, finit”
Susan it doesn’t have to be that way! The ISP and DHSP’s (Day Hab) can be full of many activities and skills for Nat to learn. If he goes to a Day Hab, which it sounds like he might, at least part-time, the goals and objectives are mandated by Mass Health (the Day Hab funder) to be skill building and measurable. This has all take place in the past 2 or 3 years, which is a major improvement over the past. The goals that I write are very similar to the kids IEP goals, we just can’t write “academic” goals with that as the end result. There are so many skills that Nat can continue to learn and grow with, throughout his life. We are accountable, we write 5 year goals with 1 year objectives from year to year, with monthly progress reports and quarterly reports (these go to parents/guardians). You’d be pleasantly surprised. Although I find the amount of paperwork completely overwhelming and sometimes redundant, I appreciate that it makes adult services a more comprehensive, learning environment. The residential piece is a bit different, but as Nat’s parents and guardians, you can have as much input as you want into the goals that are put into place. Michele

— added by Michele on Sunday, June 5, 2011 at 1:43 pm

Michele — What can I say? Bless you.

— added by Susan Senator on Sunday, June 5, 2011 at 1:52 pm

I’m glad that Nat has found a safe place to be, for the both of you. And I imagine your Max is just nervous about going away. Kudos to all of you for reaching safe places.

— added by Alisa Rock on Sunday, June 5, 2011 at 8:11 pm

Glad he qualifies for a lot of support. I can’t imagine what those teen years will be like, with either the NT son or the non-NT sons. Good luck with all those changes!

— added by Alice on Sunday, June 5, 2011 at 11:50 pm

Michele: I wish I could clone you a million times over. How better our world and children would be. How I do (continually) grieve to have someone like you in my son’s life. I can’t even get the Regional Director or her assistant to return my call. And paperwork? Forget it, they couldn’t be bothered at the group home where my son lives, although he is now on Medicaid. I feel as though it is the old “put them in an institution and forget about them” routine. I have to keep reminding myself that there are dedicated people like you in the world.

— added by Sharon Jones on Monday, June 6, 2011 at 1:16 pm

I can only imagine (because I’m not even close to being there yet) how hard this must be for you and your husband. I’m so happy he has a home, and so extremely happy for you to have some peace of mind, and some time. I’m certain this has come about in large part to all of your hard work (second full-time job, perhaps?). Congratulations, and hope you did enjoy this weekend!

— added by kim mccafferty on Monday, June 6, 2011 at 1:51 pm

Sue, I am just finishing your book Making Peace with Autism and wanted you to know it was a balm for my soul..My Nat (Natalie, age 14) is fairly high functioning living with an ASD and the way you honestly portrayed your journey with your Nat was like sitting in therapy and being validated. I haven’t been to professional therpay as you have but I am pursing it now. I was also incredibly impressed with how you and your husband function so well as a team. I’m glad to know you have a blog as it is helpful to identify with a community of women on the topic of our different children and strategies to help them reach their greatest potential.

Thank you for your raw honesty. Your love for your family is energizing!


— added by Jamie on Thursday, June 9, 2011 at 8:15 am