Susan's Blog

Monday, May 13, 2013

Dignity and the Day Program

I am in love with Nat’s Day Program provider, ASA (Autism Services Association). I went to their 50 year celebration today, and I was surrounded by ASA clients and staff. I also was sitting next to my old friend Margaret Bauman, who was one of the speakers (along with ASA Founding Parent Barbara Cutler and Martha Zeigler, two other Autism/Intellectual Disability Community Glitterati).

When I walked into the chaotic, bright room, my eyes connected with Nat’s immediately. How does that happen? It’s like our bodies know the other is in the room before our minds! I sat down next to his lovely and lively job coach, Michele. She told me how great a worker Nat is. Then Chuckie joined us, another ASA client. Chuckie talked to me nonstop; I had to tell him a few times that we should listen to the speaker, but finally I gave up and just chatted with him. Mostly he told me about all the things he was proud of (his new cap, his work award, his name being called, and his sister). Sometimes Jimmy from the next table tried to poke Chuckie, but we were all able to handle it. Chuckie was pretty good at self-advocacy. He would tell Jimmy to stop. He would tell me what was going on. And then he would call over any of the very animated staff who would help out. I like the way the staff people interact with the clients: sort of a mixture of camp counselor, friend, and authority figure. I think it was perfect: dignified yet also at a simple and straightforward level that the clients, mostly autistic, intellectually or developmentally delayed, could understand. This crowd of people was pretty intensely disabled. A lot of rocking, shouting, humming, and a good deal of the language around me was labored. I really could understand most of what was going on, because the clients (like Chuckie and Jimmy) were so welcoming of me, and not at all annoyed that I had to keep asking them to repeat themselves. Usually, I find that if I just relax and settle in with the person, catch his eyes, maybe read lips, I can get what’s going on. It’s really not rocket science.

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Nat sat very quietly. Dr. Bauman said again and again how she could not get over how independent and composed he was. And handsome! (Nat does not have to work hard at handsome at all. That’s one thing that comes easily to him –that, and charm. I am not at all biased, even though I am his mother…) I’m not sure what he could hear or get out of today’s program, but I know he loved having his name called, and collecting his award as an excellent and committed employee. He came back to his seat with the certificate and a chocolate bar, and he looked at me for permission to eat it. In that sense, I am still his go-to person for learning the ropes. Although I want him to continue to connect and bond with others out in the world, I am so pleased that I’m his Mommy, The Great and Powerful.

I had a chance to catch up with Dr. Bauman and I asked her if she thought that the next generation of people on the spectrum were going to be different from Nat’s fellow ASA clients. She said, “I think what is here today is really different from when I was a resident. Back then, so many of these guys would not even be called autistic; they were ‘mentally retarded,’ or had ‘childhood schizophrenia,’ or whatever they were calling it at the time.” She felt that they had come such a long way from that era, because of public education and early childhood services. Then of course I had to put in a plug for the late developers in the autism population: “And you know, some of these guys bloom later in life, and then they have no school to attend. Nat really blossomed after 17.” And of course she did know that. She said, [I’m paraphrasing] “Not that they’re necessarily ever going to cure this, but there are going to be more and more types found, and we will also then know how to treat each type.”

With the current autism paradigm, you get the feeling of being in a simmering stew. There are all these rich ingredients floating around –research, studies, theories, homespun wisdom — and each thing is infusing everything else in there. The surface is bubbling, but it is just not ready. But soon, soon. We will have our answers as to best practices and we will have our programs that are worthy. We will then be able to do even better by these people.  For as great, humane, and creative as ASA is — and it is, I say that a year and a half later —  there is always more that can happen. Specialized community college programs, for starters. Greater independent living training. A better awareness of resources and funding streams out there, so people can maximize what the system has to offer. Someday we will feast, but for now, all we can do is stir the pot.


Such a hopeful piece, Susan. Thank you for sharing the experience and Nat’s accomplishment.

— added by Shelly Senator on Monday, May 13, 2013 at 10:20 pm

So many of my dreams for Justin rolled up into this piece! I often hear from my friends in Jersey how dismal things are for their older children- your post gave me hope that it all can work out in time. Am very impressed with the services Nat has. Hoping for similar down the road for my boy!

— added by kim mccafferty on Thursday, May 16, 2013 at 9:05 am