Every now and then, a therapist or other professional has told me I need a vision for my son's future. Without such a vision, they say, it's impossible to set up goals and know if you've reached them. For example...
Will he live at home, in a supported group home, or independently?
What kind of job will he have?
What kinds of skills will he need to live the life I envision?
Quite honestly, I hate this kind of thinking. While there are, of course, skills and abilities anyone needs to function as an adult, the idea of preplanning my child's life strikes me as just plain wrong.
How in the world could I know what my child will want, need, or be able to do years or even decades into the future? And how many limits will I be placing on my child by predetermining his abilities, interests and challenges? If I decide "he will be living in a group home doing basic sheltered work," will I be cutting off opportunities for him to discover a true passion or a real career opportunity?
On the other hand, without parental preplanning, a child with autism can easily wind up finishing school with no prospects, supports, or opportunities. All too many families lack a "transition plan" to ensure that their child will have the abilities, supports and opportunities he needs to move smoothly from school, IEPs, and free support programs to appropriate housing, support, and work opportunities.
And far too many teens and young adults with autism lack the skills to do the basics: daily self-care and hygiene, food shopping and preparation, house cleaning and the like. Without these skills, they wind up utterly dependent on others to fix a peanut butter sandwich, lock or unlock a door, or use email.
My personal belief is that, while life skills are absolutely essential to any young adult - and particularly important to a person with autism who is unlikely to just "pick them up" on his own - placing limits on possibilities is simply limiting. The more your child or teen with autism can experience the world, discover interests, and build on abilities, the broader her horizons!
What's your take on this parental conundrum?
Lisa, so much agree with you;limits can be falsely confining. I believe in hope.
Also practicality. The more someone disabled can do for themselves; laundry, peanut butter sandwich making, getting a glass of water, taking a shower independently; the better.
And sometimes finding some kind of employment is possible in adulthood if it is a good fit, even if someone has multiple challenges.
Have been reminding myself lately, (and thank you for your other article discussing this) to keep encouraging independence in my youngest son.It does sometimes get too easy to help too much.
And when one really looks at it, most of the chores like laundry, (You put things in a machine, you press some buttons, you take them out and put them in a dryer, you press some more buttons)or opening up and heating a can of soup in the microwave are actually potentially easier to learn than say, getting dressed. And far easier than potty training.
( Okay for my youngest son with his contracted fingers, I’m not sure if he will ever be able to manipulate a can opener, but will start looking soon for adaptive devices to start him learning with.)
Of course safety is an issue, and everything has to be judged based on what your individual child is able to learn, but I think sometimes therapists tend to underestimate what is possible.
Knotty, delicate, snf important issue. On one hand, one can envision a too heavy hand from parents or caregivers that limits choice and independence for the disabled individual. On the other hand, not planning ahead can result in rounds of bad decision making and crisis management, which is rarely (if ever) a preferrable ourcome.
My own sense is that many schools overdo transition planning at the expense of promoting the most inclusive academic experience possible. I think the pathways they offer are also too limited. As one participant at the Advancing Futures for Adults with Autism put it, we’ve have to look at “possibilities beyond food, filth, floweres or folding”, which are the bases of school transition planning. Here is the consensus of the recent National Town Hall. It’s worth a read.
http://www.afaa-us.org/atf/cf/%7B3A65C524-1EB0-4098-97F5-88AB429252C6%7D/Preliminary%20Report%20AFAA%20final.pdf
Lisa,
It has been my experience as a family trainer in the autism field for 17 years see: http://www.myarchway.org (click Life Planning) that many parents will not be open to lifespan planning for their children with autism until the kids reach their teens. That is because in the early years, parents really are still hoping that their child can eventually live in the typical mainstream independently. As years pass, most parents begin to become more realistic and when that occurs, they realize it is time to start planning.
Unfortunately, that is late in the game for the financial planning part of life planning. But better late than never.
Using a person-centered approach, it is perfectly appropriate for parents to develop a comprehensive life plan for their teens, as long as certain parts of the plan are revamped annually.
As the child learns more about their tastes and talents that might lead to vocational choices or options, that certainly needs to be kept up to day.
Most special needs life planners believe that a plan should be reviewed and updated once a year, and for legal documents, once every two to three years.
Let’s face it, none of us knows what tommorrow is going to bring and what life changes are just around the corner for the parents of children and adults with autism. By having a detailed written plan, should something suddenly happen to you and someone else needs to quickly step into a guardian role, having a written life plan document is crucial for the well being of your child.
To get ideas about how to develop a detailed life plan, readers can go to http://www.myarchway.org and click on the menu choice called Life Planning. This site not only offers much advice on how to develop a life plan, it also offers links to special needs attorneys and financial planners across the US.
Probably one of the most difficult aspects of life planning is finding quality housing for adults with autism. On this same site, click on the menu choice called ARCHway, and there is a wealth of information on developing community housing options for adults with autism
The spectrum is so broad. What would your advice be to parents of a young elementary student who has a diagnosis of PDD-NOS who has definite autistic characteristics but who is thriving in an inclusion setting at this point? Our knee-jerk is to take it a step at a time because our developmental pediatrician is saying there’s a big question mark about where our son will be in 10 years. We want to be optimistically realistic. Any advice?
Christie – going by the old adage “if it ain’t broke, don’t fix it,” I’d say stick with what you’re doing until and unless you see a problem!
Lisa
Lisa, I’ve been scanning the web for information and ran across your blog. I have just written a book, Autism-Believe in the Future, from Infancy to Independence.
My daughter is 39 years old, has two jobs, drives her own car, lives in her own condo, has a boy friend, and is a part of her community.
Take a breath – after high school your journey is just beginning. I detail how we made adulthood work for Robin in the book – must can be learned from the web site.
I’m excited there are parents thinking of the future. They’d better because they can make the difference.
Ann Millan
My husband and I discuss this all the time. Of course, we dont have the luxury of worrying whether or not Alex is sent down the ultimate road to true happiness…he is a very low functioning autistic, and we aim just to help him survive.When you are faced with our kinds of challanges preplanning isnt wrong at all. I was pre planning when Alex was 3. Not that it helped any, cause when he turned 21 I discovered that all bets were off and theres very few options for kids at his level. Thats why we came up with this idea, and hope other people can see the wisdom in it. It provides housing and training for low functioning individuals as well as many employment opprtunities for the higher functioning group. Anyone evoloving to the point where they could graduate to the real world is then ready to go off on their own…if not, they have a safe sanctuary.
http://www.disneyshercs.com/FORTHANCOCK.htm