Unique Challenge?

Adults with Down Syndrome, Down Syndrome, Family Challenges, Independent Living, Parents, Siblings Add comments

Billy is a hoarder. We always called it a “pack rat” and thought it was somehow connected to his having Down Syndrome. I located an entry in my journal dated January, 1999.

John is on the way to build shelves in Billy’s study for his media center. We have worked for weeks to empty this tiny room with 17 years’ collections in it.

When we moved two years later, much of Billy’s “stuff” mysteriously disappeared. However, we moved into a larger house and like a carp thrown from a fish bowl into a pond, Billy’s stuff adapted to the size of its environment. The TV Guides, 8 track tapes, and xeroxed copies of Jane Fonda were no longer there, but the system grew to include video tapes, Peoples Magazine, and DVD films. Again, with the help of Billy’s siblings, we sought a solution to the unwieldy collection.

Tom spent most of last week converting a rarely used garage adjacent to Billy’s apartment into a new media center. It contains many shelves, a place for a spare bed, niches for Billy’s desk and his stereo player, and a spot for his exercise machine. In his usual manner, Tom created a beautiful room, professionally built and thoughtfully made to accommodate Billy’s treasures. Needless to say, Billy is thrilled with the results and is moving slowly to make it a true media center. Mary hauled trash (my term), purchased materials, cooked meals, and was on hand for any errands.

Ironically, in Sunday’s newspaper, I noted that one of the TV stations listed about four hours of programs about hoarding. I watched some of the stories and was amazed at the gravity of this compulsive disorder. Apparently there are around three million people in the United States who are living in dangerous, unhealthy situations created by hoarding. In the recorded versions the treatments required a clinical psychologist or certified organizer plus dozens of vans to haul away things people had saved. In one situation it was revealed by the children that before their father died he had for years removed his wife’s collections on a regular basis.

I no longer regard Billy’s disorder as a “unique challenge.” The unique aspect is the remarkable and loving help from his siblings.

Billy’s new Media Center takes shape.
Our family’s greatest gift is the ability and desire to work together.
There was excitement, some tension, and a few cross words.
But mostly there was love.

Please share how you deal with your unique challenges.

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