Keep holding on

I had a dream once. I was in the laundry room, and a snake flew out of the washer and landed on me. It was a two-headed snake, poisonous, and electrified, like an electric eel, I guess. In my dream, I had to hold on to both heads, since letting go of either one would mean certain death. At the same time, I was receiving a constant electric shock. Even though I wanted to let go, I held on to the snake until it died and I was safe.

Over the years, I have come back to this image. It somehow gives me courage to hold on.

Up to now, I have not shared my son's name. I don't want to use his name in this blog, so I'm going to call him "Alan." Alan is struggling now to become a successful adult.

Over the last year, we have moved Alan from an ICF/MR (Intermediate Care Facility for the Mentally Retarded) to a Medicaid Waiver program. And ICF/MR is like a nursing home, in that it is staffed much like a nursing home, and the office of long-term care is its overseeing body. 24 hour nursing staff, several clients in one building - anywhere from 10 to 15. He is now in an apartment in a small community of apartments. He has a roommate, shares a bath and kitchen, and can make his own coffee - something he is still very excited about. Alan is given the benefit of a staff person to work with him one-on-one Monday - Friday for 12 hours, and Saturday for 6 hours. On Sundays he is responsible for getting himself up, dressed, shaved, etc.

When Alan started out at his apartment we gave him a television to keep in his room. After a couple of months, it became obvious that he could not manage the television and work on becoming a productive citizen at the same time. Alan would stay up all night watching TV, then sleep all day. He would not cooperate with his staff assistants in getting up, shower, get dressed and go to classes or work. We tried lots of incentives - lunch out, money for every hour he was cooperative - but most of these incentives were limited at best. As anyone who has a child will tell you - and especially for parents of children with developmental delay - these extrinsic motivators go only so far. At one point, we even used coming home on the weekend as an incentive, but decided against that long term, as we wanted his time home to be on a separate playing field from his weekly responsibilities.

As his guardians, we were able to remove the television. He was very sad, stayed in bed for a couple of days, but gradually, he began to sleep all night most nights, and is now consistently cooperative and moving toward more independence. It's the weekends that are troublesome for him now.

We want Alan home with us on weekends, at least on Sundays. We have always gone to church together, and then spent Sunday at home relaxing, or going to a movie, out for a picnic, or a walk. However - and here is where my "holding on" dream comes into play - we've had to set conditions for Alan coming home. He has to be showered, clean shaven, teeth brushed, and have on clean clothes. This weekend, we were going to come and get him for lunch. I called him in the morning - "Alan, we're coming to get you for lunch at 12:00. Be showered, shaved, and have on clean clothes." When we arrived at noon, he was still in bed, disheveled, messy. He was ready to go - except that we could not take him home since he had not complied with the conditions. I have such a hard time keeping to that, as I am really willing to wait and let him shower. But we told him we would come back at 3:00pm, at which time we would take him out for a milkshake, and do some shopping.

At 3:00 I knocked on his door. He opened it with a grand flourish. He was smiling, shaved, but obviously had not showered. When I told him he would not go, he begged for me to wait and let him shower. (Now my heart is breaking - Alan loves to go out, spend time with his family.) I said no, hugged him, and left him there.

I am holding on to that snake. I am hoping that I can keep holding on. I hope my iron will holds out.

My son is in his 30's. Since he was a small child, I have had to force him to shower, have on clean clothes, etc. I am still doing that, and this is what is sometimes so exhausting about being the parent of an adult with developmental disabilities. Your child is an adult, but not in every aspect. Our Alan is still a child in some ways. It is a challenge to relate to him as an adult, to give him the freedom to be himself, but still set expectations.

For those of you out there experiencing the same things, keep holding on!


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