When my son was 16 we started the application process to ensure that he would be taken care of when he turned 18. My son has brain damage from an illness he suffered when he was two. The process took about a year and a half. I became his official guardian because at 18 the government sees them as an adult.This guardianship included responsibility for his money he would get from the government. This was the easy part.
My son turned 18 in March of 2010 but wouldn't be eligible for housing until August of that year. He was on the wait list and finally found a spot for him to move into. He would be moving in with two other Special Needs individuals, with two full-time Support Workers 24 hours a day. To me, this was wonderful, to my son, not so much. He was upset, scared and insecure about moving into a strange place with strangers.
The day came for him to move and we set up his room, made him comfortable and hoped that this decision would benefit both of us. For the first little while, everything was going well. I would pop in to see him and of course he would let me know how things were going. But our happiness would be short lived.
Over the next year, I would notice how the workers who were there to help my son, would be blaming him for doing outrageous things, and continually say how they couldn't handle him. Now my son isn't easy to live with, he can be very annoying, and tends to say mean things to people when he becomes frustrated. These are issues that I made the workers aware of, but it seemed that they weren't the professionals I had thought they were.
I work in an elementary school and there is a certain expectancy to be professional with your students. Of course, I joke around with them, but I am also a "teacher" to them. Which means I need to not only teach them curriculum but social skills, by modelling certain behaviour. I expected that most people in my line of work would be the same, especially those who work with Special Needs Adults.
After 2 years of battling support workers with this agency, I saw no other way but to go a step further and place Chad in an apartment with a roommate.
The choice to move him into an apartment meant he no longer qualified for 24 care but only 7 hours a day care. Which these support workers were to help teach Chad to cook, clean, do banking and become more independent.
I don't think my expectations were too much, I wasn't asking for the support workers to do anything but their job. Yet again, I was disappointed, and again we decided that Chad would move into his own place. He would not qualify for any supervision, or help from anyone but me. Here I was again back into the position of caretaker. It was up to me to help my son become independent.
Now I'm not saying that every parent is supposed to help their children become independent. But if these agencies are there for our children's benefit then let them be accountable. Let them not make excuses of not enough training to deal with a disabled adult. It shouldn't be my responsibility when there are shortages of good workers. Our children shouldn't have to suffer under others incapable hands.
I wish we would have had a better experience, it was a very difficult time in both of our lives. It may not be the same experience for others, at least I hope.
Today Chad has been living on his own for 18 mths. There has been many ups and down, but also many celebrations. He has taught himself to cook, he can clean his apartment, do his laundry, and pay his own bills. He has made me very proud and continues to every day.
Watch On the Brink a show about what to expect when children with Autism become Adults with Autism.
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