One Foot In Front of the Other

I received one of those "make and wish and pass it on" e-mails today. They are usually meant to be encouraging. Most of the people who send me these e-mails are my friends, and we trade them around to say "you're important to me" or "you make a difference in my life." This one today includes a quote - like a prayer for your friends - that I like. I thought I would include it in my post today. "May today there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content with yourself just the way you are. Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us." Alan, my husband, and I are where we are supposed to be. It is no...

Home, for Alan, has always been the light at the end of the tunnel every week. He could come home, eat with us, watch tv in his room, visit extended family. Since his placement in the waiver apartments, we have been encouraging him to participate in activities with his peers. We have a monthly activity schedule and go over it every week to see if there is something he is interested in. It has always seemed that he felt that this was some sort of punishment. This Thursday morning, at 5:10 am, Alan called. "Hey Mom," he said breathlessly, "I don't want to come home this weekend, I don't want to do that. I want to stay here and hang out with my friends. And I need $20 for our trip on Sunday. When will you be bringing that?" I was surprised. I told him it was fine for him to stay there, and that I would bring the money after work. When I arrived at his apartment, he was putting his clean clothes away, having finished his laundry. His waiver staff told...

With all the news about the international adoption gone bad, I have been re-living the first few weeks with Alan. Adoption is not always the "warm fuzzy" that is portrayed in movies or on television, nor by some adoption agencies. When we adopted Alan, we had several months of adjustments. We did not know each other, and were trying to create a family while having no shared history. Alan did not speak, so we could not know what he was thinking, and even if he had been able to talk to us, I am not sure he would have been able to give voice to his feelings. I remember waking up in the middle of the night the first night to check on him. He was sitting up in his bed, silent tears falling down his cheeks. Of course he was frightened. Two near strangers had taken him somewhere he had never been, and it was very frightening. We had adjustments to make as well, learning to watch out for a little one when it had been just my husband and I for nearly 6 years. We had to learn w...

Autism is a disorder with many facets. For Alan, it is a fascination with time. This morning at exactly 6:16am, the phone rang. "Hello, Mom? I got my shower at 5:09am. I am ready to come home for the day. When are you coming to get me?" Honestly, I was still in bed, but awake. I told Alan that we would be at his apartment to pick him up at 11:30am. This would give us plenty of time to get there and not be late. It is very stressful for Alan if we are late. "Ok, Mom, 11:30am. You will be here to get me...Alan...that guy...at 11:30am. I will be shaved and dressed." Alan often refers to himself in the third person. Alan also has some quirky sayings that we have actually picked up and use pretty often. An example: he likes to say "and be doing that" to mean a continuous action. Pretty good use of the phrase if you ask me. He ended our conversation with this: "I will be here, and ready, so we can go home, and get my soft drinks, and pace and ...

As Alan grew up, we began to consider the options for him as far as independent living. We put off thinking about his long term future too long. I tell parents of middle school children that it is not too early to begin thinking about what they want for their child. I think we felt that we didn't want to hurry Alan out of the house. So he was almost 18 before we realized we needed to find a placement for Alan - and fast! At 17, Alan was big, and he was bored. He had graduated from high school, and was working in a local sheltered workshop. But he was often belligerent, and sometimes aggressive. I believe that he really wanted some independence, but he didn't know how to ask for that. The organization that served our community had many group homes - ICF/MR facilities - and some assisted living apartments, but the waiting list was long. So we widened the scope of our inquiry. We found a great setting for Alan, but it was about 2 hours away. Eventually, we decided to pu...

Occasionally, our son would say something, or do something that was so 'normal', we were delighted. These are stories we tell over and over, because they are so typical of any child, and because, coming from Alan, pretty extraordinary. Alan was in 4th grade when his self-contained class at school was having a ice cream sundae party. Alan was supposed to bring two cans of whipped cream to school that day. I bought those two cans, and on the day in question, put them in his backpack. He boarded the bus, and I waved to him as I always did. The bus traveled down the road, then abruptly stopped. And didn't go on for a while. Somehow I knew that those cans hadn't stayed in Alan's backpack.... Yes, whipped cream had decorated more than one student on the bus that morning. I was serious when the school called and told me of the incident. Of course, we would talk to Alan, I promised. Of course, we did not condone such behavior. In my heart, I was laughing. It was ...

What is "normal?" With a disabled child, normal takes on a new meaning. When Alan was young, I absolutely refused to give up any "normal" activities just because we had a child with developmental disabilities. Let me say that I grew up in a home where we were always told the sky was the limit. My sister had some learning disabilities, some physical challenges, but as a family, we forged ahead. My husband had been raised the same way. In our minds, there was no limit to what we could do - what we SHOULD do. The truth is, idealism got us only so far. The result was pure misery. In those early days, I imagined that, if accounts were written of us, we would be heralded as the family that "never let disability slow them down." Gradually, however, the push to be that normal family took its toll. Two events gave us the insight we needed to stop the mad rush toward failure. First, we went on a three day, two night camping trip with our church. It was a l...

When we adopted our son, I was so thrilled to finally have a little person in the house. I smiled when I stepped on dinosaurs in the bathroom. I loved it when Alan fell asleep while I was reading a story to him. I treasured singing to him when he went to bed at night. Alan didn't say much when he was young (another feature of autism and developmental disability). He had a few words, but for a long time, he would not say "Mom" or "Dad". However, he did go around the house whispering. Finally, I got close enough to hear what he was saying - it was my name: "Debbie Goff". Hence, my husband and most of my friends call me "Debbie Goff". Hey, it could be worse! Finally, Alan began to talk, and liked to record himself on a cassette tape. One of his favorite things to do was to make, to put it delicately, "bodily function" soundtracks. Alan would make a rude noise - or several at once - then say " 'cuse me!" (for ...

Alan spent the night with us last night, and slept all night long - a first for us in several years. He woke up early to tell me about three dreams he'd had. Easter is a time of hope, and one of my favorite holidays. I am reminded that Jesus rose from the grave, and that all things are possible. Alan often says that when Jesus comes back, everyone will be well, and no one will be sick, or blind, or deaf. I am looking forward to that time. For now, I am looking forward to a blessed Easter day, and a wonderful meal with our entire family today. Alan is happy. On CNN this morning, I saw an interview with Karl Taro Greenfeld about his new book "Boy Alone". He is the brother of an adult with autism. I included a You Tube interview on my links list. Check it out.

Yesterday was autism awareness day, and this morning on CNN there were lots of stories about parents and their children who have autism. For the parents of adult children of severely autistic children, as with any parent of an adult child with developmental disabilities, there are concerns about what lies ahead. I know the title of this post might be shocking to some, but every parent I have ever met who has an adult child with developmental disabilities expresses this sentiment. The title comes from a quote reported on CNN this morning, and it resonates with me. I heard a parent say once, "I am praying that I live at least one second longer than my child." I often feel that way. The terrible tragedy is that these developmentally disabled adults are so vulnerable to abuse. Alan is so easily manipulated sometimes, he might be coaxed into doing something he shouldn't do. He has no concept of money, so he could be convinced to give his banking information to someone. ...