Susan's Blog

Wednesday, November 16, 2011

Sometimes you need a new paradigm

For a lot of today I was walking around feeling a little like my skin hurt–that’s how bad I felt about Nat’s situation. I called my Mom after I dropped him off this morning and I was barely coherent. I could not figure out why I felt so bad, and I was pausing a lot while talking to her. I know she was getting pretty worried.

So what was it that had set me off? I think it had something to do with our arrival this morning. We were waiting outside the building because we were early. Two clients, a young man and a young woman got out of a van and were so excited to see me. They had that look that many have in Nat’s circles: stained buck teeth, pimples, fat. But their faces lit up when they saw me — and they didn’t even know who I was. They asked who I was; they shook my hand. The young woman kept saying it was time to go in, but the staff person did not want her to come early. But he did let Nat and me in, which was odd. I told myself not to read into it. I went around smiling and shaking hands with clients and staff, and tried to remember names. I wanted to ask question after question: what does Nat do during the day? Are there forks and salt or does he have to bring it? What is he like there? Do people understand him?

I got some answers but I felt so many more questions filling me up, but it was too much and so nothing valuable came out. I kept hearing my thoughts:  this is so familiar, so familiar. Same phlegmy and raw stuff in my throat, dry pain behind my eyes, making my forehead wrinkle. It’s that deja vu of leaving Nat somewhere kind of drab; kind of ugly, leaving with a cloud of uncertainty. The thought Institution sucking out my soul like a Dementor. Like The House at school, like school itself. When back then what I thought I wanted was for him to just be with me, my boy in a bubble.

I think what I wanted, and what I’ve wanted all along was to fix Nat’s life. I see myself as a powerful, capable, bright person. Time and energy on my side, a beautiful husband at my side. Why can’t I create something better than this?

So those thoughts were taking bites out of my insides most of the day. Sometimes while I was riding they cleared away and I healed a little. The Beethoven helped. And the sweet, sweet creamy coffee. I also made myself grade a lot of papers, to make me feel like a Woman With A Purpose, rather than just a watery blob.

I dropped Ben at an appointment and sat in my car with more papers to grade but I didn’t. I cried a lot, so much that my tissues disintegrated. I let it evaporate and went to get Ben, grateful for the dark in the car so he wouldn’t see. In the house, I lay on the couch like a sloth and talked to Ned about what dinner should be. I’m not sure when it was in the conversation but at some point he said, “You know, Sue, that room they’re in? The whole thing; it’s a lot like social group, you know, at the Eliot Center? A lot of guys running around, a kind of dingy old room, some are chatting, Nat’s walking all over the place, and they’re maybe painting pumpkins. This is at least as good as that.”

Social group! Yes. Oh my God, yes.

Sometimes you’re just looking at something and not seeing it at all, like those optical illusion paintings, where first you see the vase in the center and then you look again and you see the two profiles on either side of it. Once you see that you can never not see it again. Here I’ve been telling Nat that DayProgram is work.  Or that it’s like school, kind of.  He tried calling it New School once, but that didn’t stick. That wasn’t it, and both he and I knew it. The thing is, it’s not school. It is much more like social group which we all know is Nat’s absolute favorite place to be.

With that new paradigm in place, I found the energy to get off the couch and start pulling out leftovers and salad.


Oh, Susan, I am thinking of you and sweet Nat tonight.

— added by Susan on Wednesday, November 16, 2011 at 9:31 pm

Oh, I know, I know, I know. Where we are, in Canada, transition takes place at the age of 19. My 19 year old boy (man!) is in an adult program, the very best. Still, I feel the way you feel, the way you perfectly described feeling. You are a great woman and mother. Thank you so much for sharing with all of us on a similar journey, it really helps. So many of your posts strike a great big chord with me. We are doing our best, right?

— added by DeeDee on Wednesday, November 16, 2011 at 10:54 pm

Susan, I’ve got a lump in my throat reading this. We’re all living with that aching “cloud of uncertainty.” Thank you — and Ned — for offering a different way to frame it. As DeeDee observed above, we ARE all doing our best.

— added by Liane on Thursday, November 17, 2011 at 9:58 am

Oh, you are two steps ahead of us but I can see so clearly what you’re talking about. I’ve been trying to explain to my son what life after school will be like but it’s hard to explain what you don’t know. This is a very good way to explain services after high school.

I just got back from a school meeting where we talked about very important things. I’ve got some thinking to do. It’s nice to know I am not alone on this journey. If I were nearby I would make you a giant sweet, sweet creamy cup of cyber-coffee as thanks for sharing.

— added by Dixie on Thursday, November 17, 2011 at 10:49 am

Thank you so much for what you do. I have a 4 year old daughter with autism who was diagnosed at 20 months. It has been such a rough road. Your books have truly encouraged me. I cry every time I reread certain parts because you so profoundly state how it feels in this world. Your survival guide is priceless and I plan to recommend it to anyone on this journey. You have such insight having been through all of this. I thank God for people like you!!!

— added by Holly on Thursday, November 17, 2011 at 12:01 pm

“It is much more like social group which we all know is Nat’s absolute favorite place to be.”

While I have been reading your blog recently, I guess I am not included in the “which we all know.” I get the feeling this statement that “social group… is Nat’s absolute favorite place to be” sounds like sarcasm. Your feelings greatly concern me and I wish I could help you in my old hometown of Brookline (including starting and ending in nearby Brighton from 1970-1996) even though I am now 6,000 miles away in Jerusalem Israel.

Although done here in israel for my own son, one answer might adult school. While “adult school” does not exist in Massachusetts (to the best of my knowledge) it seems to exist provided by some state governments for some adults with autism, for example in California. Michigan seems to provide it for at least 4 years by providing FAPE until the end of the school year in which the person turns 26.

If the day program is really bad, you might have to create your own program. This route may not be as daunting as it sounds because some publicly known parents have already done so in Massacusetts, such as Dr. Barbara Cutler of Arlingotn for her son Robby (now probably in his 40s).

Anyway, you have my sympathy and my good wishes.

Arthur Golden

— added by Arthur Golden on Friday, November 18, 2011 at 6:48 am

Thank goodness for the paradigm shift! And for Ned for seeing. And, critically, your ability to see it, accept it, and embrace it. Thank you for honestly sharing the hard things about the transitions your family has experienced. It is so very helpful. I hope that this transition smooths out soon.

— added by Kathleen on Friday, November 18, 2011 at 7:01 am

Yea for Adult Schools and ASD. I was a language teacher in California Adult Schools before I became an Autism Mom. These schools have many good, affordable programs and an established infrastructure in place which could adapt to adult ASD needs and community inclusion with the right educational leadership in charge.

— added by Sarah on Friday, November 18, 2011 at 1:52 pm

Thanks for sharing, Susan. I don’t understand why these places have to be so drab. I would feel bad dropping him off someplace dingy too. It should be filled with comfy chairs and smells of chocolate chip cookies. It should smell of lemon Ajax and be bright and cheery. That’s what it could be like.

— added by Alisa Rock on Sunday, November 20, 2011 at 7:42 pm

I just stumbled across this site while searching for toys to buy my 7 year old son Jayson, and have reading through different things for close to an hour! First in regards to this particular post, is you should be thrilled at happiness you saw in the clients, that says it all. Although my son is young and I have some time before we will be at the stage you are at, I managed a respite home for both children and adults for close to five years. One of the things I did early on was transport out guests too and from day programs and check in every now and then. What I learned was the mood and energy of the clients said it all about how a place was run, and how those individuals were treated when others were not around. It always stood true, if I arrived in the morning and the majority of those receiving services were happy and excited to be back, when I did a random drop in at a later time, I walked into and environment that was run for the purpose of the individuals and always with there best interest in mind. On the other hand I had a few places I would go and the vibe was not good. Clients would seem agitated and not too happy about arriving for the day. I think it goes with out saying those drop in visits often showed that the agenda was about something other than those there to enjoy themselves and better there lives! On another note, I am very excited to explore your books more, and again even though our children are at different stages I could relate to so much of what I read today, and plan on checking in often! Thank you, for sharing you experiences I think that I would be lost today if it weren’t for parents like you!

— added by Katie Doyle on Tuesday, November 22, 2011 at 4:14 am

I always felt it was important to go with your gut feeling. Susan, if you really feel Nat could be in a better place, you should explore your state’s Self-Determination Program if it is available to you. Here in New York, we have a wonderful program for our young adults with disabilities, transitioning out of school. Marisa, my daughter who is on the autism spectrum, graduated this past June and is doing the Self-Determination program through New York’s ISS (Independent Support Services). She joined Special Olympics. She has 2 part-time jobs. She joined a gym to work out. She is earning money, learning banking skills and shopping for things she needs and wants, and is also actively involved in sports with the aid of her support staff. And for all those activities she has staff that I hired to take her to those activities. All that is paid for by the Office for People with Developmental Disabilities here in New York. The difference between ISS and Day Habilitation is that the ISS program is built around the individuals needs and goals for their future, whereas the Day Habilitation programs set up a general plan for the group. Day Habilitation staff are not teachers. The goal is community integration and social interaction. This is fine if the individual is in a category where they truly are not capable of more. My older daughter Rebecca, is in a Day Habilitation program and I am confident that this is the right place for her to be.
However, if you have doubts, this is the time to explore other options. Yes, there is work involved and hurdles to get past but it’s worth trying. If it doesn’t work, there’s always Day Habilitation to go back to. It’s something to think about, and it’s not too late.

— added by Sherry Rubin on Sunday, November 27, 2011 at 11:11 am

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