One Foot In Front of the Other

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...

This morning came a little too early, as we were up rather late last night. It is a bright a crisp day, and a new year with great possibilities. Alan is going out with staff today. He doesn't want to come home, just wants us to stop by to say hello. I am thankful this new year for friends and family, for the little gifts that make life satisfying. I am thankful for celebrations and for quiet evenings at home. Thankful for wonderful memories, and the opportunity to make more. Happy New Year!

The old year is nearly over, with possibilities for the new year coming tomorrow. I was reading Romans 8 today. This is one of my favorite chapters in the Bible, as the words within have seen me through many a rough patch in my life. Although the last year has seen its share of ups and downs, I am renewed when I read that nothing can separate us from the love of God. No matter what happens, I am persuaded that God loves all of us, God has Alan in His hand. We are not separated from Him when things go badly, or life presents challenges. I realized that I define myself in many ways as Alan's mother. Sometimes I see myself apart from him, but mostly he is my concern every day of my life. I forget so easily that I need to depend on the grace of God to help make decisions, weather difficult circumstances, find joy in dark places. Our family has always depended on God to give us wisdom, and to guide us in day to day life. I am renewing that dependence, in my heart and mind, on t...

During a Christmas dinner this last week, my husband and I were able to reconnect with a long-time friend. She, too has had to navigate this uncharted territory of parenting an adult child with developmental disabilities. We asked how her daughter was doing, and where she was living. She told us that her adult daughter - who is several years older than Alan - was in a Human Development Center (HDC) in the eastern part of the state. "Angela" was finally in a placement that enabled her to live a productive life, while also maintaining the level of supervision she needed. Her daughter had experienced difficulties with living in a less restrictive community setting until her placement in the HDC. Although the thread of our conversation was interrupted several times with other topics and the usual diverse conversations at a dinner table, we returned to it again and again. It was as if we were grasping at a life raft in a sometimes turbulent ocean. Having someone else share ...

I haven't blogged in a LONG time, school getting started, and all the time it takes for me to just sit down in front of a computer. I wonder sometimes...will I ever get to the point that I can take "bad news" well? Another set of difficulties for Alan, some medical, some behavioral. Every time I hear about it, I want to go in a corner and hide. I feel that I have been kicked in the gut. I feel overwhelmed and wonder "what if" we can't get the behavior and the health issues under control. Our Thanksgiving was wonderful with family and friends, but Alan did not sleep at all while he was at home. I think I am getting older, and it is so much harder to deal with the non-stop behavior issues. We signed up for this, and I don't regret a moment, but I sometimes want to wave a magic wand and have this all become simpler.