Susan's Blog

Tuesday, June 12, 2012

Nat’s First ISP Meeting

We had Nat’s ISP meeting today, which is basically an IEP for adults. Although there are fewer requirements for the service providers to fulfill for their clients, Nat’s service provider and also his dayhab/day program staff seem more than eager to outline comprehensive goals for him.  Clearly charmed by his intense work ethic as well as his sudden smile and the occasional surprising flash of violet-blue Bambi eyes, his entire team wants to watch Nat soar.

Everything I heard pre-22 told me that Autism Adulthood would be the dregs of the universe, but it has been the opposite for Nat. Yes, it is true that Nat has Priority One funding (because of occasional intense episodes of frustration that can become self-injurious) and so he has enough support in his life. He is lucky in that way, lucky in the way that would otherwise be considered unlucky, for this means that he also has an IQ that measures pretty low. (Although that reality is not shameful, it is nevertheless an acrid, poison-tasting reality that IQ is tallied in a way that is completely anti-autistic in nature. If you don’t see the forest, nor the trees, nor the bark, but instead you are listening to the quietest of animals there, you will presumably have a tough time choosing which thing doesn’t belong. I hate the IQ as much as Theory of Mind. Anti-autistic biases.)

Yes it is true that we live in Massachusetts, the land of choices, open-mindedness, and opportunities. And yes, Nat has a couple of championship fighters in his corner. Ned and I have been through Rocky Balboa-like training, punching everything in sight instead of sides of beef to get what Nat needed.

But, the other side of the equation is that the service providers are indeed out there. Today, I experienced the beautiful reality of that. I walked in, and there was Nat, sitting straight as a rod in neat pink button down and khakis, at an oval table with our DDS liaison, the house manager and direct care staffer we love, the day programs director, and the dayhab coordinator. I sat around that table listening to reports of Nat. S, the program director, talked about how “we haven’t had any concerns, for the first time with one of our workers… he really understands — Nat, you really are very good in the parking lot, with the cars backing up.” (Something like that.)

All discussion included Nat. Although there were times that we lapsed into “he,” we all quickly remembered that Nat was sitting right there. Everytime we remembered and spoke directly to him, he would not only turn towards the speaker, he would strain towards him/her, to really understand what was being said. His brows creased and his eyes focused sharply on the words, and he would answer. Oh, yes, he would answer.  So the DDS liaison directed her questions at him, and though she filled in or prompted him a little too much (because she doesn’t know how to structure questions for him to get his original language and genuine response), he conversed with her in his way:

“What do you do when you go recycling, Nat?”

“Take to the dump. Bottles.”

“What do you wear in the parking lot at the supermarket?”



“Orange vest.”

“And Nat, when you are not working, on Tuesdays and Thursdays, what do you do?”

“Meals on Wheels, recycling… play some basketball, walk the track.”

We also learned about Nat’s homelife a bit, and how he does out in the community with his roommates. Apparently he helps herd them when they are not paying attention! The lovely thing also was that Nat’s staffer always gave Nat the best possible interpretation: “He shows a lot of concern for his roommates. When we had the fire drill he was very good with them, trying to get them to go out.” No one said things like, “He really needs everyone to follow the routine, it can be a problem.”

We set goals having to do with improving communication via the iPad — typing and (well-monitored) Facebook and YouTube. Also, he still needs work on safety skills although we all felt that he does know all about looking for cars when crossing. Still, he doesn’t know about the asshole that goes through the red light when he has a walk sign.

I told them that my goal was for him one day to use his earnings to pay for more job coaching. Everyone agreed that that would be great, although it is hard to keep a competitive job like his in this economy. 🙁  But if anyone can, it will be Nat.  It will be Nat.


Great information. Thanks.

— added by Rob Gross on Tuesday, June 12, 2012 at 4:31 pm

Hi Susan,
Congratulations to Nat and you for a successful Individual Support Plan meeting.
The 766 system sure is different from the adult system and I am happy things are going well.

I loved all I read but was amused by “Yes it is true that we live in Massachusetts, the land of choices, open-mindedness, and opportunities.” Most families and individuals would disagree with that notion as it takes constant advocacy and battles to make things work and get things done as well as be treated with respect and dignity. Massachusetts still does not have a system of self-determination as other states do (thus the REAL LIVES bill) so individuals and families are forced to accept services that do not meet their needs, which in turn is a waste of taxpayer money and the precious time our children and adults have. I am the eternal optimist and continue with many others to effect systems change. It will come some day
Thank you for your blog and my happiness to Nat and your family on a wonderful ISP ! Treasure it ! Ed

— added by Ed Bielecki on Tuesday, June 12, 2012 at 5:05 pm

Your post made me cry with happiness. I remember Nat from a barbeque at Kubi (9 years ago?) and I couldn’t imagine then how much he would grow into the fine young man he is now. You and Ned and Nat are just wonderful!

— added by Donna on Tuesday, June 12, 2012 at 5:31 pm

Well said and Bravo about the I.Q/Forest for trees and alternate ways of perceiving. I’ve been grappling with the same I.Q., Standardized tests lately. Love the way you put this and way to go Nat with the violet blue Bambi eyes. 🙂

— added by Estee on Tuesday, June 12, 2012 at 5:43 pm

Ed, I know you are right about Massachusetts. I don’t have stars in my eyes, I do realize we are so lucky for now. I look forward to working with you and others to improve our state!

— added by Susan Senator on Tuesday, June 12, 2012 at 7:14 pm

Stay positive, but monitor, monitor, monitor. I agree with Ed it requires constant monitoring/advocacy, but remains frustrating to say the least. I schedule quarterly meetings with DayHab staff, including DDS liaison, which we schedule for ahead during the annual ISP. I’ve requested, and get, weekly e-mail updates on activities from dayhab. This enables me to hear about any negative issues while they are fresh, and to provide input to staff re: strategies for successful implementation. I am very concerned about those with autism in the adult system as the ISPs are formed with our guys having to fit the ‘group’, (one-size-fits-all) whereas we need more staff with training in the know-hows for incorporating and facilitating individual communicative styles…as you mentioned above, how to cue; how to provide visuals to include the use of technology, social stories to prep for transitions, etc. and other best practises that make for productive outcomes. With the numbers aging out of their entitlement programs into the adult world, perhaps there will be greater demand toward change. Let’s hope! In the mean time, hugs to you for all you are doing, and may your son continue to do well.

— added by Marlene Ross on Tuesday, June 12, 2012 at 9:23 pm


— added by Susan Senator on Tuesday, June 12, 2012 at 9:27 pm

He always does what he can and it’s so great that what he “can” continues to expand. Way to go, Nat! So proud of you and happy for you.

— added by Shelly Senator on Wednesday, June 13, 2012 at 8:34 am

I am glad that Nat has services needed. I read your blog avidly because my son is following along, but dorsn’t live in Mass. Here on Maine, the state has frozen spending for people with disabilities. Social services are slated to be cut by 40 million. Maine is largely rural, and it is hard to support the needed level of care needed.

At a recent conference on transition, two phrases chilled my mama’s heart…”plan for your child to be poor” and “while you wait” which was a reference to the 3 to 4 year waitlist for day services…housing is a decade out.

— added by Dixie Redmond on Monday, July 2, 2012 at 8:30 am