Interesting column by Lisa Jo Rudy from About.com. While her intentions are good, am just wondering if she and her husband are really thinking long term? By living in a supported residence or an apartment -- receiving supports as needed by direct support professionals -- wouldn't this be increasing Tom's independence and better preparing him for the day his parents can no longer care for him?
Today, my husband was chatting casually with an acquaintance who knows our son Tom. Tom is 14, with high functioning autism; he's verbal, pleasant, but clearly "different." The acquaintance had heard about a nearby residential setting for adults with autism, and mentioned it to my husband. Her thought was that it might be a good option for our son sometime in the future.
My husband thanked her, but let her know that it's our intention to have our son live with us, at least for the foreseeable future (unless he winds up going off to college or making other educational or career choices that take him out of the area). If it seems to make sense, we could certainly help him to find an apartment or other living situation nearby, and provide supports as they're needed.
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I have a thirty-seven year old autistic son who lives on his own. All the professionals deemed it impossible. Due to his success, I became an independent living coach. I help parents work through their personal blocks and fears when it comes to helping their children grow and eventually go. No one knows what the future brings for any child, but especially our children with autism. Each child is different, but most parents concerns seem to be somewhat the same. Fear and more fear, which holds the parents back from making choices out of their comfort zone. No risks no gains said Anna, a woman who has worked with autistic adults for the past thirty-one years. She is right. We must focus on what our children can do not on what they cannot do. If I did not address my fears and my own blocks I would have never had the courage to allow my son to live independently. The first year wasn't easy; it was extremely difficult for my son and me. But as the years passed it did get easier and we both learned along the way. How else does one learn if they don't have the experiences? We all want our children to live the best life possible. That is every parent's dream. Let us work together and make our dreams come true.
ReplyDeleteThis is interesting. You're right, in that we are not thinking VERY long term (20 -25 years down the pike) except in general terms (perhaps he'll stay in this house, or we'll find him a smaller condo; we'll access local or state funded in-home supports for finances, home repair, etc.; we'll set up a trustee-driven fund for his ongoing welfare; etc.).
ReplyDeleteThat's partly because we really don't feel we want to limit our expectations of our son: who knows what he may be able to accomplish; whether he'll go on to college or conservatory; whether he'll marry or find a life partner. So it's true: we're thinking about a more or less ten year plan.
But we also don't feel it's "limiting" to live with family as opposed to living with strangers or all by yourself. It seems to me that our insistence on lonely living is a cultural norm that's been around only since about 1947 - and I don't really subscribe to it.
I guess I'm just not convinced that "the best life possible" is necessarily "a life in which you are living at a significant distance from the people you love most and with whom you are closest."
Lisa Rudy
I am all in favor of whatever works best for each child. I never expected Brandon to want to live alone, but that was his dream. I helped him accomplish his dream. It is all about matching the child/adult according to their desires and abilities.
ReplyDeleteHi Lisa and Amalia,
ReplyDeleteThanks for sharing your perspectives. I totally understand both views -- Lisa not looking too far down the pike and Amalia coming to grips and letting go to let her son go. And, of course, there is no one-size fits all solutions. Recognizing on the abilities of each child/adult and building on that to fulfill hopes and dreams is the key.
Lynn