One Foot In Front of the Other

Today I read in our local paper that another of the HDC's in Arkansas at Booneville was under investigation. A resident died over the weekend, and an investigation of the death is ongoing. Editorials in our paper predict that Arkansas will have to overhaul how they house and support citizens with developmental delays and other handicapping conditions. The waiting lists for these HDC's are very long. People wait years to have a place to go. These are some of our most vulnerable citizens, and we have very little in the way of community support. Some families make their own way, keeping their children at home, making their child's life their life passion. Although we have chosen to try to place Alan in some kind of community setting, we are still very hands on parents. I wonder what would happen if he was a ward of the state, as so many mentally handicapped adults are in Arkansas. Who knows what will result from the Justice Department probe of Arkansas' Human Devel...

I am recovering from surgery now, and have had quite a lot of time to read about some news that affects many families in my state. Arkansas has 6 Human Development Centers throughout the state. These are places where children and adults with developmental/physical/mental disabilities are housed. A generation ago, when a child was born with such disabilities, he or she was immediately placed in one of these HDC's and lived there for life. This month, one of these centers is closing. There are many reasons for the closure, but the most pressing one is the loss of Medicaid funding. According to the newspaper, the loss of funding was due to the conditions the residents lived with. In addition, the state and the other 5 centers are being investigated by the U.S. government for the lack of alternatives for these clients, and the way in which most of them are cut off from the community. I have visited three of these centers. Alan has been in one of them (during a much needed 3 week r...

I will be undergoing surgery this week. On Mother's Day, we picked up Alan and went to my mother's for lunch. I have this bracelet on my left wrist - from type and match for blood - and Alan noticed it. "Did you go to the hospital or something?" he asked. I explained that I would be going into the hospital for surgery this week. "What kind of surgery? Like when I had my nose surgery?" I told him that it would be different, more extensive. "You had gall bladder surgery when I was little." Alan said. I was surprised - but shouldn't have been. He remembers everything. He was quiet for a minute. "Will you be able to see me next weekend?" he asked. I told him no, that I would not, but that his dad would see him. Although the questions were very matter of fact, I could tell he was a little worried. "Do you want me to call you this week, after my surgery?" I asked him. "Yes, Mom, I would like that. I would like to ...

Erma Bombeck was someone I admired. Today, on Sunday Morning, there was a retrospective of her career and life. I think the quote that is the title says it all. I have found that there is something funny in just about everything that happens - if not at the time, then later. Yes, there are plenty of tragic moments when you have a child with disabilities. But there are also so many moments that make for funny memories, even hilarious ones. Alan has provided us with so many memories that make us smile. Like the time we were traveling to a different state, and entered a new time zone. Alan was panicked - the time on the clock in our car was not correct. Time is one of the most important things to Alan, and he is quite disturbed if a clock is slow or fast. Alan just sat in the back seat and pointed in horror at the digital clock on the dashboard. In a real burst of genius, my husband said, "Oh, that's the correct time. But local time is one hour earlier." Alan rela...

I'm going to say that I have been hoping that Alan would become more independent. We want him to have his own life, his own friends, be in charge of his own activities. He is beginning to do that, and I am finding that I am lonely. It seems that suddenly - and I know this has been gradual - Alan has decided that he does not want to come home. If he does, it is just for a few hours, then he wants to go back to his apartment. This is of course because he has settled into a routine that he likes. We have always been such hands on parents. We have supervised Alan's every move, made sure he had everything he needed, hovered behind the scenes barely breathing as he took tentative steps away from us and toward independence. And now that he is like most 30 somethings, and does not need to see his parents every weekend, I am left wondering what to do with myself. I miss him. I want to see him and have him at home. But now, for him, home is his apartment. We love our son. He ...

This week I attended a quarterly meeting to see how Alan is progressing toward achieving his goals. We had mostly really good news. We finally have a good staff mix for Alan, and he is responding well to the people who have direct contact with him. He is getting up in the morning, showering, shaving, brushing his teeth. All without prompts. His room is staying tidy - again without prompts. What I glean from this is: He is happy, and his happiness is manifested in his desire to have a clean and tidy environment. But, with an autistic adult (or child for that matter) there is often a disconnect from reality, as there is with Alan. He sees something and wants it, even if it does not belong to him. The fact that it does not belong to him only enters his mind AFTER he has taken it. Lots of his friends have lost their soft drinks this way. I know that this can lead to him taking things in other settings, which could potentially be very problematic for him. He believes that all pe...