Susan's Blog

Tuesday, September 20, 2011

Idle Thoughts

“Well, that was school.  I learned a lot.” This is what Ned once imagined Nat might be thinking as he rode home from his very first day of school, back in 1993.  The school was located in a junior college in the adjacent town; it was a mixed-disability class, as well as having typically developing children.  Ned told me that he had no idea what Nat might make of school — it was such a big concept to understand for a three year old, especially one with “Expressive Language Disorder and Autistic-Like Symptoms.” (This was his very first diagnosis; I almost like its quaint and evasive character, in the way that I can look back on almost anything from that long ago with fondness:  awww, such a little innocent naive diagnosis.)  Even though we prepared him with a Nat Book (known to most people as Social Stories, but the Nat Books were invented by me; I did not know about Social Stories back then) complete with pictures of the teachers, classroom, building, and bus, Ned wondered if Nat might think that “school” was just that one day.

Ned stayed hidden in the hallway those first few days of Nat’s preschool.  He hid so that Nat could forget about him and get used to the teachers there.  He stayed a long time, listening to Nat cry.  It broke his heart, but he knew that they both had to get through it.  Plus those first few days were just for an hour or two, of transition, so Ned recently realized that he must have been staying in the corridor for a while because the schoolday was so short.

“Debi [the teacher] finally got Nat to look at her and stop crying, by quoting the commercial from the MassMillions Lottery,” Ned reminded me of this fact recently.  I had forgotten that Nat was entranced by the lottery commercials back then, and he got the words “MassMillions” mixed up with “Maximillian” in that Nat way of his that was wrong yet made sense.  “And the winning Maximillian number is…”  Nat has always had terrific teachers.  Except for one or two bad apples, the entire bunch was pretty much wonderful.

Will, Nat’s current teacher, called me the other day to set up a meeting so we can discuss the transition process for Nat’s graduation from school.  The school is always so thoughtful and mindful of process.  I remember how terrific they were getting Nat accustomed to the idea of living in The Residence.  They used souped-up versions of the Nat Books, they used countdown calendars, they set up visits and dinners to The House.  Nat was comfortable with the people and the place by the time move-in came.

His last day will be November 11, 4 days before he turns 22.  We chose this day because it is a Friday, and Fridays make the most sense to be end days.  We can then have his ceremony and party that afternoon.  He will most likely spend his first days of Autistic Adulthood living with us at home, while we get the Group Apartment ready.  We have settled on a 3-roommate group home in an apartment nearby.  We have two other young men that we are hoping will become Nat’s roommates; their parents have to figure out how they themselves can prepare for this big change, as well as their sons.  Our service provider is about to start recruiting a live-in caregiver.  We have chosen Nat’s Day Program, in a nearby town.  This program has many ties with local businesses like Shaws Supermarket, and we imagine Nat will have a lot of worthwhile stuff to do with his time there.  I’m pretty sure the day program would likely begin the following Monday, November 14.  Unless we decide to take Nat on a little vacation first, to celebrate his achievements.

Tonight Ned and I were talking about Nat’s imminent graduation, because we realized it was the same day as a friend’s annual dance party.  We figure we can do both.  One year we brought Nat to the dance party, and he loved it, of course.  The way he dances is to hop straight up and down.  “I wonder what Nat’s going to think that day,” Ned said.  He paused a beat and then said, “Well, that was school.  I learned a lot.”

We both laughed.


Could you tell us how this is being funded and if you have to contribute your own money to his rent or services. Will this be funded for his entire life? Wondering what the process is.

— added by Pat on Tuesday, September 20, 2011 at 9:50 pm

If it all works out, the live-in person will receive food and rent for free, and a stipend paid for by Medicaid (a program called Adult Foster Care). The apartment will be acquired (rented or bought) by a service provider, (organizations throughout the country that run group homes) who will apply for a Project-Based Section 8 from our town to get the rent subsidized. I expect that the three families will be contributing in terms of weekend activities and personal involvement, though the caregiver will be there at all times that the tenants are there. When the tenants are out at Day Programs, the caregiver can be out (M-F 9-3).

The key programs utilized here are Medicaid’s Adult Foster Care program (the roommates must all be found eligible), and Project-Based Section 8. Also, it is necessary for the service provider to find an inexpensive enough apartment that would be covered by the Section 8 support.

— added by Susan Senator on Wednesday, September 21, 2011 at 6:53 am

Oh, my gosh, reading this post (the part about school ending, and Nat moving to the apartment), my heart started racing. I can’t imagine all the feelings you must be having! I’m glad you found some roommates (hopefully) and a place nearby. We need some social stories written for the parents. Well, I suppose your blogs and a few others are my “Nat stories”.

— added by Alice on Wednesday, September 21, 2011 at 11:55 am

Sounds very exciting. A bit mystified about the live-in person. There is only one? What happens if that person gets sick, wants to go on vacation, or out to dinner with friends, or quits without notice?

— added by Ohio Mom on Wednesday, September 21, 2011 at 7:52 pm

The service provider is equipped with a lot of respite staff and they would provide the substitute in case of illness or, God forbid, quitting. Otherwise things like vacation and days off are worked in to the schedule. We have not gotten to the nuts and bolts of the schedule yet, just the broad strokes like the funding and the group itself.

— added by Susan Senator on Wednesday, September 21, 2011 at 8:02 pm

Okay, now I understand.

— added by Ohio Mom on Thursday, September 22, 2011 at 8:55 am

Congratulation Susan! It’s a big step.

— added by Kate on Thursday, September 22, 2011 at 4:31 pm

I love the bookends of this post; Nat HAS learned a lot from school. And I’ve learned a lot from readying about his journey. Thanks for giving us a window into this huge transition for you all. I hope the arrangements with Nat’s roommates implement smoothly.

— added by Kathleen on Friday, September 23, 2011 at 9:16 am

These events must bring up so many mixed emotions, both for you and Ned. Just remember what a wonderful job you’ve both done (I know, with help!) for your son to be able to live outside of your home, and function well in a day program too. I hope a decade or so from now I’ll be writing a similar post. Truly, a huge accomplishment, and congratulations!

— added by kim mccafferty on Monday, September 26, 2011 at 2:56 pm

I think Nat diserves a celebratory trip, just like his parents!! This is really the culmination of a LOT of hard work and effort, on all your parts. Hooray and congratulations!! Lisa

— added by lisa on Monday, September 26, 2011 at 3:38 pm

Susan, you’ve been working on this for as long as I’ve been reading your blog, (years) so I say a huge congratulations for seeing this finally come together. My guy is 14, almost 15 and hopefully one day I will be able to do the same for him. Heaven knows what funding will be like eight years from now. But, this is wonderful news indeed.

— added by Sharon Jones on Wednesday, September 28, 2011 at 7:59 pm

Thank you so much for telling your story! So many parents worry about what they will do when their child grows up. Showing how YOU did gives us all hope!

— added by Laura Shumaker on Thursday, September 29, 2011 at 4:17 pm

Would love to share your awesome blog. Am I able to do this at our site?
If you have a moment, pls check us out. We have been in business for the last 4 years. Our goal is to empower and encourage our parents. We have a facebook and Twitter page (autism resource). Please let me know.
Thanks again for all your sharing. My son is 19 with Fetal Alchol Syndrome and lives at home with us currently. (Plays golf 4 days a week!)
Sisters in caring,

— added by Sharon Daugherty on Thursday, September 29, 2011 at 4:50 pm

Sharon: please do! Thanks!

— added by Susan Senator on Friday, September 30, 2011 at 10:45 am

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