One Foot In Front of the Other

The summer is nearly over. I will soon be back in school, but our family has enjoyed some wonderful time together in the last couple of months. Alan went with us to visit family this summer. What fun he had! He joked and laughed with us, was engaged most of the time, and enjoyed all our sightseeing and family meals. Alan slept all night and was awake all day during our four days on the road. But on our way back, he slept all the way. This is not unusual, since he tends to sleep when he is facing a major transition. When we got him home, he wanted to go back to his apartment. I was a little worried, and for good reason, it turns out, because he has had some behavior incidents in the week since we have been back. For a while, he was doing really well, and this is probably not a major setback, but I still get this feeling of dread in the pit of my stomach when Alan acts out like this. Here are the issues I find we face over and over: Alan sees the world as revolving around him, wh...

We had Alan over to our house for dinner on July 4th. He was very quiet - unusually so. No pacing, talking, clapping. He was able to talk with us, have a great conversation. We cherish moments like this. As we sat at the dinner table, eating his favorites - barbeque, corn on the cob, squash - we started talking about our upcoming vacation to Wichita, KS. Alan spoke up. "Dad, I've been thinking. We could take 412 West to Interstate 35, then go north to Wichita. That's the route I think we should take." There was a moment of silence. "Alan, that's a great idea," my husband replied. "That's exactly what we will do!" Alan spent most of his childhood studying maps, particularly the US interstate system. He hasn't looked at a map in a while, so I asked if he had been studying maps to figure this out. "You know I just know this, Mom," Alan said seriously. "I don't have to look at a map anymore. I just know it....

Today is Alan's 32nd birthday. I went to see him yesterday. He was excited about his birthday, and the family celebration we will have this weekend. "This is my last day to be 31 years old!" Alan was grinning from ear to ear. I hugged him, saying "I just want to hug the 31 year old Alan one last time." This pleased him. Today, I will deliver his ice cream cake to the support center, and his dad and I will return this evening to share in the celebration with his friends. Tomorrow, we will take him out to eat at a restaurant of his choice. No, he does not want to spend the night. He wants to get back to his home. I've been looking at pictures of Alan all week, thinking about the changes we have seen in the last 29 years. He has gone through ups and downs. Our family has enjoyed periods of great joy and devastating defeat. Alan has struggled every day of his life to do his very best all the time. We are proud of him. He's 32!

It is my experience as the parent of a child with developmental disabilities that my husband and I have experienced grief and hope in a repeating cycle. I don't think our experience is unique. When we adopted Alan, we were idealistic and believed that through sheer force of will and unfailing love, we could help Alan overcome some of the challenges he faced. Many times we would hear of a person who was able to lead a very independent life with the support of caring parents/family. We believed God had entrusted us with this beautiful child because He was going to show us what to do for Alan, and that this would lead to wonderful things. Of course, it DID lead to wonderful things, but not what we had envisioned. As Alan grew older, his disability was an increasing challenge for him and for those around him. School was a nightmare more or less. My husband and I shed many tears over the frustration of trying to fit Alan into the limited resources the public schools had to offer....

When Alan was about 8 years old, he was diagnosed with Tourette Syndrome (TS). Although he had all 14 signs of autism, he also had the motor and vocal tics associated with TS. Tourette Syndrome is getting lots of press right now because the US soccer team goalie, Tim Howard, has TS. As with many people who have Tourette Syndrome, symptoms can be managed with the right set of medications, and symptoms sometimes disappear during activities that require intense concentration. This is good "PR" for a little understood syndrome. Like autism, TS is a neurological disorder. Unlike autism, TS is thought to be linked to at least one faulty gene. Autism has yet to be linked to any genetic abnormality, although some believe a link exists. We did extensive research into TS when Alan was diagnosed. His odd behavior and motor/facial/vocal tics could be attributed to TS. At the time, City of Hope Medical Center in Duarte, California was the premier research center for TS. (The Tou...

I read with interest the article in this last Sunday's Parade Magazine about golfer Ernie Els and his family. Ernie and Liezl Els' son was diagnosed with autism, and the family, through the foundation they founded, is building a Center of Excellence for children with autism - a school, medical, research, and recreational activities. Children whose disabilities fall under the Autism Spectrum Disorder do benefit from specialized therapy and education. I am happy that this facility is being built, and hope that many more like it will be built around the country. While our son had many good experiences in public school, sometimes it was the private therapy that made the difference. I've included a link to the Els' website.

For most of our time as parents, we have had to fight for Alan to get what he needs. We have heard, over and over, words like "He just doesn't fit in." or "We don't know what to do with him." or, my personal favorite, "Can you tell us what works with Alan?" Our answer usually goes something like this: What works? If we had the answer to that question, we would be living the high life on the money we made from giving answers to parents with children who have these deficits... We have struggled to get our son into a setting that we believe will allow him to achieve to his potential. We don't know what heights he will reach, as we have had to modify them sometimes day by day, but we know he can do more that what he has done in the past. We have been very happy with this latest placement, because we see growth in independence, not in every area, but in ways that matter to us, and in ways that make Alan feel good about himself. I got a call t...