When you fail to plan, you plan to fail. R. Schuller
Dream Plan for Aaron: 1981 (Part 1) (click here) talked about Aaron when he was age 6 and Tommy age 4. In Part 2 I will talk about when Aaron was in Junior High. In 1989 Aaron was 14 and Tommy 13. In a later post, I will describe exactly how we tried to implement this dream plan. The successes and attempts that failed, er, were learning experiences.
Dream Plan for Aaron: 1989 (Part 2)
Each day Aaron will get a hug, a song, a tickle, opportunities to exercise and to help someone.
He will have choices in each activity and environment which fills his life space (community, school/work/vocational, leisure/recreation, domestic domains).
He will have the best adaptations, supplementary materials, communication system and other modifications so he can be as independent as possible.
He will at least partially participate in all of his life activities, with the constant goal of increased participation.
But the most important part of the dream is for Aaron to have people who love him, and who he can love–a strong circle of friends.
Community Connections and Networking
Aaron will have increased opportunities to be around people who are NOT PAID to be with him.
He will be part of several groups/clubs which are composed of persons with and without disabilities. These groups will be for people about his same age, who share some interest.
They will get to know each other over time, and will have many shared experiences. There will be a formal “Circle of Friends” session to outline people and goals to achieve community connections.
This networking will include each of their families and friends so there is a community of people who care about Aaron.
School Domain:
Because Aaron has the label of autism and mental retardation, we know he will learn fewer things than 99% of the population.
We know it will take him longer to learn them,
We knowhe will forget and lose skills he doesn’t practice.
We know Aaron needs adaptations, modifications, etc. to even partially participate in activities; and,
We know he will need direct /indirect supervision at all times.
Aaron has been in school 13 years he has only 8 years to go:
In school, Aaron will have a functional curriculum (vocational, recreation/leisure, domestic and general community functioning) which looks at he needs in his life spaces. This will carry over in all parts of his life–all year long (including summer school).
It will be arranged around activities which are jointly decided by Aaron, his family, friends and professional team.
Vocational/Job Domain:
Aaron will continue to build his job resume. During his last year of school (age 22) Aaron will be placed on the permanent job he will continue after graduation. He will have the communication system and other adaptations he will need.
Aaron’s employment may include paid and unpaid hours. It may include 4 hours/seven days each week because of Aaron’s love for routine. It may include the same job (loading pop machines, emptying waste baskets….. in several sites. It may include a variety of tasks (so he doesn’t get bored) and could require a co-worker with complimentary skills so Aaron and he/she could share a job.
It should be a job he likes and around people who will get to know and like him for a long period of time. The ongoing support of the Butler County Adult Supported Employment Services Division will be in place because of a well developed transition plan for vocation and independent living between the school and adult services.
Domestic Domain:
Around age 22, Aaron will move to a shelftered apartment/condo or co-op housing unit in his community (West Chester).
He will live with one or two other people with disabilities or in a foster family/shared-parenting arrangement. He will recieve supported living personnel from BC Residential Semi-independent Living Services.
Aaron will actively participate in his own shopping, cleaning, cooking, yard work and personal grooming needs. He will use the communication systems he learned in school.
The home, as close as possible, should match the lifestyle of the neighbors/community and be near his natural family.
Leisure/Recreation Domain:
Aaron will have supported recreation/leisure activities in his community and will join some community groups/clubs; tandem bike riding, bowling, YMCA, Exercise, horseback riding, swimming, etc.
Long Term Supports:
Financially, Aaron will be dependent on SSI and Medicare. An insurance trust will be set up to supplement his basic needs, activities, clothing, recreation/leisure and medial care in the case of his parents passing away.
Tommy will be Aaron’s guardian and though not providing direct care, he will oversee the quality of care. This will work if the trust is large enough when the parents die.
We know 99% of people with severe disabilities are either physically, emotionally or sexually abused or neglected.
We know Aaron is especially vulnerable.
We hope to surround Aaron with people who care about him, love him and at least a few people who don’t have to be paid to be around him.
We want to give him varied opportunities to make choices and be challenged to increase skills in all his environments and activities.
Though dependent in many ways, Aaron will have self esteem and confidence in the things he does– and be a contributor to his family, his extended family and society.
Judith Snow urges us to “Dream more than plan. Plans tend to become hardened–they lose the capacity to change. If you take the first step toward a dream, the dream will change as you go along. The dream will be changed by reality, but the dream will also change reality.”
Beth Mount, et al. What are Learning about Circles of Support 1988.
Speak Your Mind:
When you were in Junior High, what kinds of dreams did you and your parents have? How were they alike and different than our dreams for Aaron? Could you see the evolution from the 1981 Dream Plan (Part 1) to the 1989 Dream Plan (Part 2)? What do you think Aaron’s life might look like in 1998?
Keep Climbing: Onward and Upward
All my best,
Mary
Part 3 will be a list of Aaron’s likes and dislikes we gave to the residential staff when Aaron moved into his own place at age 25.
Good write-up, I am normal visitor of one’s web site, maintain up the nice operate, and It is going to be a regular visitor for a long time. “He who seizes the right moment is the right man.” by Johann von Goethe.
Wow Mary. Thanks for the compliment. While I am grateful for the few accomplishments in my life. The Divorce family thing is a) a really big area and I would ideally have to narrow it down. b)I’m neither a lawyer(God protect me for them.) or a psychologist. So how would I be able to help?
But once again thanks for the compliment I do appreciate it even if I can’t for the life of me figure out what to do with it if anything.
Have a great day.
Just keep your eyes, ears and heart open Gary. There are so many people in need of kind words–I’m sure you will find the right people.
Gary, it sounds like you just found your niche. Maybe you could help other families who are going through a divorce? Just believe in yourself and all your accomplishments.
Thanks Mary the Creator was looking out for me. The reason I even brought up such an awful thing is that as I was reading the comment about manipulation it reminded of the divorce. I mean really I was 5 and Bill was 2. Now if it can happen to one person then with the massive divorce rate and the reality that most of the time the divorces are dirt ugly. How many children with various disabilities had that to complicate an already complicated life journey.
Since few people see disabled children let alone raise them there is not a lot of experiential knowledge out there. Coupled with the role models in our current society of be absolutely perfect or else. Think Mattel’s Ken and Barbie. So as I see it there is a great need for not only the touchy feely kinda blogs that I have seen on raising a disabled child but a dialogue between parents/guardians, current disabled children, educators of various formats and those like me who lived through it have enough verbal skills to share their experiences in a way that the others groups can work constructively with.
Well that is how it is hitting as I write.
Have a great day everyone.
Very ticky I suppose. One other angle is as in my case when my father divorced my mom(he had the captain Kirk syndrome)I soon learned that his folks wanted me to be as helpless as possible. While my mom and her family wanted me to be as independent as possible.
Also the fact a came with a check and my brother didn’t had an affect even during the divorce proceeding. My mother tells me that in this case the judge saw right through them and said something like.”I awarding custody of both boys to the mother because it is apparent that the only reson you want the older child(that’s me)is for the SSI check.
So I imagine that manipulation is even within and between families.
Just a thought.
Oh Gary, I’m so sorry you were in the middle of your parent’s divorce. That must have been so hard on everyone. Your mom did a terrific job, the fates were looking out for you.
Gosh, the first sentence just struck me! Wouldn’t it be interesting if *every* parent went through this kind of process for every child. I don’t think I’ve given my boys either a hug or a tickle or a kiss today yet. And they are not here either of them.
As for relationships, I saw this in my own family. It is tricky and particularly so when you feel that someone is manipulating and taking advantage of your disabled family member who is likely not worldly-wise depending on the extent and type of disability and the attitudes of the family of origin towards their relationships. How much independence do you give them? Tricky.
One of the gifts Aaron has given us is getting to the basics. It’s tricky indeed, but we can do it.
Sorry Mary I do tend to have this strange way of asking or thinking about things that are complicated. Don’t know why that is maybe I have to much time on my hands for my brain to have the ability to just throw this stuff out.
Your answer however are problably right on. I never have been a parent so I can only watch from a perspective that is strangely enough closer to the students than to parents, teachers, and busybody administrators climbing the corporate styled ladder.
Thanks for putting up with my quirky questions and comments.
I think that is what teed me off the most during my volunteer years.(God did I just say that in the past tense.) It seems that most of the parents didn’t even want to know who their children considered friends. As a result I noticed that for example: Richard and his girlfriend Sandra were separated whenever the Sandra parents were around so as not to offend them.
The same thing could be said of me and Maria. Even though Maria tried to show them to me and I guess get us interacting. Her parents just ignored her actions. One time she even set up the seat belt in their car so I would get the hint to come along with her. This is amazing as she was not taught or encouraged to be taught how to use a seat belt.
So you tell me what is wrong when most parents don’t seem to want their disabled offsprings to have genuine human relationships.
As Always have a great day.
Gary you asked some complicated questions.
1. Many parents are reluctant to see their child grow into an adult sexual being. And that is parents of “normal” kids.
2. Many parents and cultures think of people with disabilities as either “asexual” and/or “eternal child” which further complicates things.
Mary you do a great job of showing people like me what it is like on the other end of the stick. I am fascinated by the way you set it this up like an IEP report.
Kathy is absolutely right it is about relationships. The circle we are surrounded by. From my perspective ,biased as it might be, we are in great need of powerful healing in this domain as a species. But with regards to those of us with physical or intellectual impairments it is even more so.
I very much like how you wanted people who wanted to be with or loved him as a human being regardless of $$$$$ coming their way.
Have a great day.
Thanks Gary. You are right, the relationships and friendships are everything.
As always, I appreciate your perspective.
Hi Mary,
Wow, this is an interesting lens through which to explore changes in expectation and assumptions. In some ways, we’ve moved forward, particular in terms of home life. In other ways, such as education, we’ve regressed to some extent. The area I’m most curious about is “relationships.” To what extent do families today articulate the importance of relationships? Parents like you brought their importance to light. Thanks for sharing this.
Kathy
Welcome Kathy,
You’re absolutely right. In some ways we have moved forward, but in many ways, unfortunately,–we are worse than we were 20 years ago. I wonder if anyone even talks about “domains” anymore?
The relationships are what it is all about. Thanks for pointing that out. I wish I had worked harder on that part.
We had so many hopes and dreams. I guess we did the best we could. There were many success stories.