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What is the Secret of Happiness: Security for My Special Needs Adult

Joined: 5/13/2016
Posts: 1
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Only minutes after 2 year old Kevin’s diagnosis as a person with autism (PWA) I questioned: “Who’ll take care of him when we are gone?” We agreed that as soon as the right placement came along for him, we’d accept it. But the likelihood was that there’d be no spot until we were well into old age. We went to work on creating the life he needed.

Following were a stream of stressors: locating a home program for preschool PWA (special education rights run from age 3 to 21), the search for a school for people with autism, relocation, parental disability, financial and personal sacrifices and difficulties--even trips to Marian apparition sites in search of a miracle. To be sure there were many blessings in our life too. Still, there lurked the increasing fear of the great unknown: what happens to him after age 21? How do we assure his happiness and security? And ours.
We were fortunate that his school maintained an adult day program into which he was welcomed. Some parents are forced to search their area to find just the right program, and they often end up settling for lack of choices. With 18 years under his belt at the school, we knew we were in a safe place and we were not settling. But where would he live if we should die? Who would look after him? We parents provided no full or half siblings to undertake that responsibility and we would choose not to burden them with his care if we could.

Being in New Jersey, where the State maintained a housing list for its people with developmental disabilities, we expected never to see him move up the list. Parents describe it as an emergency list, one your child quickly rose to the top of when one or both parents suffered some grave life event. It was not promising in the least. Our expectation was that he’d live with his mother and me as he had in the years since our divorce. “Maybe when one of us hits 70”, we thought, “maybe then he’d move up the list. But would the place designated be the perfect one we dreamed of--or a nightmare?”

Eighteen years later and prayers answered. Like a bolt from the blue, the State called unexpectedly with a placement for Kevin. The group home was geographically close and the program seemed perfect—down to the house manager, transportation and activities. We were ecstatic (at a relatively young age, under 60) that we would see Kevin, age 22 today, placed into a proper living environment to coexist as a family with his roommates and staff. All of this allows us the luxury of observing him for a period of years before we depart this earth, secure in the belief that he is happy in a safe place.

Security for my special needs adult, that’s my secret of happiness.
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