A Good Day!
As the number of adults with autism and developmental disabilities rise, many professionals and parents ask me what I am looking for? Will I ever be satisfied? Is it just a pipedream or can we really build an inclusive community around a person with severe disabilities? Can there be a combination of natural supports and paid supports? Does the family have to do it all? Can an adult with autism have a decent quality of life and be happy?
They tell me it doesn’t really make any difference to Aaron, my son with severe disabilities and autism. Their logic says that since Aaron can’t talk, and therefore can’t complain, it is only the mother (me) who has these high standards and expectations and Aaron is just fine and the mother is well, you know, ….
Many times, they tell me how lucky we are… Aaron has a Medicaid Home and Community Based (HCBS) Waiver when there are thousands of people on the waiting lists; Aaron lives in a nice house close to his parents–not in an institution in another city….
The media is full of stories about desperate families of adults with autism and intellectual disabilities: abandon your child to get services — To the parents and professionals who want to give up or “re-institutionalize,” Can we prove inclusion in the community can work?
Many nights these tapes play in my head over-and-over keeping me awake. I ask myself what else I can do to make Aaron’s life more inclusive. I count my blessings.
We are lucky. We’ve worked hard to be where we are, but there is still much to do.
But last Sunday, I went to bed and smiled: “Today Aaron had a good day!”
We usually bring Aaron home with us on Sundays. Here is what this inclusive day looked like:
Aaron’s dad picked him up at 9:30 AM from his house. He talked with Kevin, Aaron’s long-time caregiver. Kevin knew when Aaron had had his last BM. Kevin had given Aaron his breakfast and he was dressed in his Sunday clothes—hair combed, shaved and teeth brushed. He looked like a typical 38 year old.
Aaron came to our house and immediately got his favorite books from the closet. His dad and I sat on couches near him in the living room. Aaron put his books on the coffee table where he turned the pages in two books at one time. When he wanted more books, he went to the closet, chose his books, and carried them to the table. (I know this doesn’t sound like a big deal but because of Aaron’s severe motor and balance issues, this is something we have worked on for years and years.) He also went to the fridge and when I ask if he wanted the pitcher of ice tea or the juice, he pointed to the ice tea.
When he got tired of the books, he went into the kitchen, sat at the kitchen table and we ate our spaghetti lunch together. Aaron put his dishes in the sink.
At approximately noon, Tommy and Isabella (Aaron’s brother and niece) came over. We all changed to our swimsuits, lathered up with sunscreen and walked to the pool at our condo.
Dad started with Aaron in the deep end and Tommy stayed close to Isabella with her floaties. Sometimes we were apart, sometimes we all played ball together and Isabella would swim between Uncle Aaron and Grandpa.
The other families each did their own thing, but we all crossed paths in a friendly community sort of way. There were about 8 other neighborhood kids and their parents in and out of the pool. They all said hello and though we didn’t really know any of these neighbors (it’s a big complex) they were friendly to Aaron and interacted as anyone would. I introduced myself, Tom, Aaron, Tommy and Isabella and hope we will see them again next week.
After about an hour or so, we headed back home, changed clothes and everyone had a drink and ate cheese and crackers.
Isabella wanted to play Hide and Seek in the house (her favorite place is under my desk) and Aaron and I would count to ten and then go and find her. Isabella loves to hide, but then she giggles so much it is easy to find her. Aaron enjoyed the game the first couple times, but then Isabella wanted more and more and so he just sat back on the couch with his books and watched.
About 4 o’clock, Tommy and Isabella left to meet Ana, her mom, who was getting off work; Tom, Aaron and I took a ride to the post office and grocery.
At 5:30 we took Aaron back to his house and Kevin and his wife were waiting for Aaron to take him to King’s Island, an amusement park. We took him to the bathroom, washed his face and hands, checked his shirt and hair and again exchanged some details about how Aaron likes the Octopus and train ride and …
Aaron got in their car and they were off for the evening. Tom and I went back home.
Too much to ask?
Now, I ask you… is this really so difficult to visualize?
If it was only paid staff, Aaron’s parents are dead or out-of-town, could the staff figure out how to fill up a weekend afternoon with some friendly faces and meaningful activities in the community?
Would Aaron be groomed and the staff person double-check his toileting schedule so he is comfortable? Would Aaron be in status-enhancing clothes that were clean and age-appropriate so he could blend into the community?
I know Kevin can do it, because he and his family have known Aaron for years. But I can’t understand why other staff don’t get it.
Aaron is currently between roommates, so right this minute, he has 1-1 staff. This is the best opportunity of his life for getting out into the community, when he gets a roommate it will be 1-2 people and much harder to take them out.
Focus on the positive
Today I have a reason to feel good about Aaron’s life. We all shared a pleasant summer day. Aaron and our family did what many other families were doing all over the city. Aaron was surrounded by people who love him and care about him. We celebrated his self-determination to make choices and do the activities he likes. Aaron used the skills he learned in his 22 years in school and therapy. Aaron had staff who were willing to try and give him a good time. Aaron was healthy and happy. I only saw him bite his hand one time all day. The activities were in his home community. There are future opportunities for building a network of long term support and acceptance.
And this is inclusion. This is our vision for Aaron. This is the future we hope for our son. This is all we are asking for. Carpe Diem!
Come on, share what you are thinking. Am I being unreasonable to expect these kinds of days? Should I just accept “reality”? Do I just count my blessings? Do you have similar experiences? Should we go back- and re-institutionalize?
Keep Climbing: Onward and Upward
All my best,
I agree.. That’s a great mindset.. Focus on the positive and everything will follow..
That sounds like a lovely day, Mary. Aaron has some stamina, I think I would have declined the evening activity at the amusement park! It doesn’t sound so hard to have that kind of day every day but I know from your stories that it is all too rare.
It is good to have a goal, and to visualize that goal. By telling this story you are helping us visualize, then hope, then act.
It was a lovely day. Not so hard to understand and yet you are right it was very rare.
But once the “support staff” GETS it! then it can occur with more frequency. Last Sunday K- took Aaron to his family reunion. “So he gets paid to be at his family reunion?” some people ask. And I answer thankfully, YES!
K-‘s family has known Aaron over many years. His daughter used to call him Uncle Aaron. Aaron’s behaviors are accepted sometimes better than at his own family reunions. And, like any parent who has a young child, Aaron will still need to be watched, taken to the bathroom, have his food cut up… Kevin will be working–but what a wonderful inclusive accepting evening for Aaron around people who know and care about him.
Great stories, Mary! Aaron’ s a lucky guy to have parents that care so much and keep plugging away to educate the community and include Aaron in it. I’m working on getting Neill to a Lauren Alaina concert. She’s been asking Jess to have Neill come. She’ll be in Lucasville ( no, not the prison!) in a couple of weeks!
Thanks Mary Ann, you will always be an inspiration to me. Neill is one lucky kid too. Now Jessica’s contacts with the American Idol community even include Neill. That is one great story about building community and using your individual circles of friends. Let me know all about it. Call me, let’s get together soon.