One Foot In Front of the Other

Alan has had no incidents of difficult behavior, problems, uncooperative episodes for six weeks now. This medication change has been nothing short of a miracle. Like all miracles associated with autistic adults and children, I think this one may have a shelf life. We rejoice in the "spendor in the grass, glory in the flower" for now, because we know nothing stays the same. But right now, it's glorious!!

We received an e-mail from Alan's caseworker. This one line made my heart happy. "Alan continues to be awesome."

We've recently had a couple of great changes in the way we are managing our son's health and behavior. DHS and a new psychiatrist have really come through for Alan. One of the issues we have had come up over and over is medication management. For a person on Medicaid, finding a psychiatrist who is willing/able to take a Medicaid patient is difficult. We have recently stumbled onto such a person, and what a great find he is! Alan has had so many behavior issues in the last several years. We have tried to find a good mix of medication and staffing, but to no avail. We have provided DHS with a long, detailed narrative of the behavior issues, hoping to get approval for 24/7 staffing. We are on the road to that approval. Provisionally, we have about 18 hours a day of one-on-one staffing. Now to the medication part. It is so hard to make changes to your child's medications. Many times, there is a lot of fear that willy-nilly changes (and we have been subjected to them...

I watched the movie Temple Grandin again with the staff from my school. I've spent a few days in our self-contained SPED classroom in the last couple of weeks. I've been thinking that as inspiring as Temple's story is, there are so many autistic children who will never achieve what she has accomplished. Although I think most autistic children have unique and marvelous gifts, many times behavior and lack of social skills keep them from the kind of independent life we envision for them. Alan has a wonderful memory, the ability to "see" the US interstate system, and he can plan a trip in his mind. However, he needs 24 hour a day support to live independently. His behavior is the issue. Try as we might, we can't get enough of a grip on it to help him go any farther. I think the lesson to take away from Temple Grandin's life is that it is so important that we treat our children as equals. "Different but not less." That means that, as far as th...

This last week, Alan called me so upset his voice was shaking. "Mom, I want to move out of here!" These were the first words out of his mouth. He had tried to call me several times that day, and was obviously very agitated. As I questioned him, his chief complaint was that "people keep asking stupid questions" and "sometimes they get in front of the tv while I am trying to watch it and I don't like that." We talked for a while, and I told him we needed to have a meeting so we could talk with other staff about his complaints. His dad called him later that night, and by then Alan was calmer. The next day was a repeat. Alan tried to call several times, and I was finally able to take the call. "Jim is touching me and I don't like it!" Jim is one of the staff at Alan's residential program. Alan does not like to be touched. I was not worried that Alan was not safe, but knew he was getting very upset. He was locked in his room and...

When you are the parent of a developmentally disabled adult, you measure successes in increments. Last week, Alan called on Sunday to find out when we were coming to get him for Sunday dinner. We discussed a time, and I was getting ready to remind him to shower, shave, and have on clean clothes when he said, "I know...be prepared. I can use the word 'prepared' because it means ready. I am using a new word, 'prepared.'" It made me happy all day because he is still trying to do new things, however small. Thinking back over the last 30 years with our son, I see this ebb and flow of emotion. I have written many times about the ups and downs as a special needs parent. My mother and I were reminiscing this week about the intense nature of our parenting journey. I had a few episodes of deep depression - the kind where you cry all the time and can't stop - as a result of dealing with the constant difficulties in raising a young man who can't control h...

The Justice Department of the United States had filed a lawsuit against the state of Arkansas last year. In that lawsuit, the USJD had alleged that the Human Development Centers in Arkansas violated the rights of individuals with disabilities because the residents of these HDC's were essentially kept out of the community. This last month, the lawsuit was dismissed, without prejudice, essentially because the Justice Department had violated its own rules by filing the lawsuit before the state had a chance to rectify the problems cited. This does not mean that it is over, since the merits of the case will be reviewed soon, and the suit may be refiled. Today in our state paper, it was reported that one of the oldest and largest HDC's was going to move their children to private facilities throughout the state. This HDC serves 460+ adults, and 50 children under the age of 18. The thinking of the state is that these children are deprived of an education by being housed in the HDC...