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Showing posts from March, 2010

"I did not know I was lost."

In addition to our son's developmental delay, he also has autism. This diagnosis was discussed very early on in his life, but for many reasons, he was not formally diagnosed until he was an adult.

Alan was diagnosed with Tourette Syndrome (also on the autism spectrum) when he was about nine. Because there were so many mixed signals in the process of an accurate diagnosis, it was hard to put a finger on what was going on with our son. Kind of like the forest and the trees. The individual trees (symptoms) were so diverse and myriad, the forest was invisible.

The first time we saw Alan, he was spinning a pair of scissors on the floor, crowing with laughter. His attention was completely on those scissors, and the motion was obviously very engaging. Did he look at us? No, and not for a long time. But he would go back to scissors, or a lid from a jar, or anything that would spin, and be completely enthralled.

There are 14 signs of autism. Alan had every single one of them...

He…

Keep holding on

I had a dream once. I was in the laundry room, and a snake flew out of the washer and landed on me. It was a two-headed snake, poisonous, and electrified, like an electric eel, I guess. In my dream, I had to hold on to both heads, since letting go of either one would mean certain death. At the same time, I was receiving a constant electric shock. Even though I wanted to let go, I held on to the snake until it died and I was safe.

Over the years, I have come back to this image. It somehow gives me courage to hold on.

Up to now, I have not shared my son's name. I don't want to use his name in this blog, so I'm going to call him "Alan." Alan is struggling now to become a successful adult.

Over the last year, we have moved Alan from an ICF/MR (Intermediate Care Facility for the Mentally Retarded) to a Medicaid Waiver program. And ICF/MR is like a nursing home, in that it is staffed much like a nursing home, and the office of long-term care is its overseeing b…

At Sam's club

Well, you see alot at Sam's Club. Yesterday, shopping at our local Sam's, I saw an older woman and her daughter. The daughter was developmentally delayed, probably in her late 30's or early 4o's, but with that innocent look. The daughter was not verbal, but definitely let her wishes be known - she struck out on her own, away from mom, pell-mell thru the warehouse, headed for the door. Mom runs after her, and leads her back with a promise "We'll go home soon." Daughter grabs the first friendly person she sees, obviously pleading with someone to take her somewhere else. Lots of stares, a few disapproving looks, some folks obviously filled with pity. Mom was very patient, and helped to focus daughter on something else. It's times that those that I want to walk up to the person and say "I know what you are going through, I know you are doing your best, it's ok, who cares if people watch?" It takes guts to just live your life. That&…

Six word memoir

My friend, Sandra, asked all her adult friends to post the "six word memoir" - your life (or a portion of your life) condensed into six words. If you read this, feel free to respond with your own memoir.

Technically, a "memoir" is a snapshot in time, not a life story.

Gray hair, blotchy skin - yep, 50!

On the other hand...

If you ever watched Seinfeld, you can remember Jerry often musing over a situation. He propose one course of action, then say "On the other hand.."

There are many of the "other hand" scenarios in my family.

I love seeing my son on weekends. Its great to spend time with him, and to talk with him to the extent he is willing or able to talk with us. On the other hand, he is usually so excited about coming home, the first night he is here, he paces all night, talks to himself, gets into our stash of soft drinks or milk, spills said soft drinks or milk on the carpet. No sleep that night. The next day, he paces up and down in the living room, singing to himself and clapping, unable to really interact with us except to walk around us as he paces. I've actually witnessed him pacing about 24 hours straight.

On the other hand, if he spends more than a couple of nights with us, he gets into our routine, sleeps through the night, and begins to relax. We can end up ha…

Faith and the realities of life

When my husband, son, and I began our journey as a "special" family, I met lots of folks who were devastated by their child's situation. We are unique in that we adopted our son, aware of some of his disabilities, but certainly no more prepared that the average special family for the obstacles and trials we would face. The fact that we are a family formed by adoption is the only difference between our family and others who face similar challenges.

Our deep faith has guided every one of our decisions and has formed our perspectives on disability. In light of our assurance of God's love and His desire for all people to experience a full and meaningful life, I have some very rock solid beliefs.

I truly believe our son was not an "accident of nature", but that he is of great value in God's eyes, perhaps of greater value than we can fathom. If I accept that a child born with superior intellectual understanding, great beauty, or talent is a gift from God, …

Beyond Amsterdam

If you are the parent of a developmentally disabled child you have heard this one:

You booked a flight to Paris - it was your dream destination - but somehow your plane landed in Amsterdam. Now, Amsterdam is not Paris, but it has its points. There is beauty there, you can see things you never imagined, you are entranced with its flowers, the lovely buildings. No, it's not Paris, but it's still great. And you feel richer because you have visited a place that you would never have chosen, but which has brought you great joy.

This story is used to explain the initial confusion, but eventual joy in the experience of being blessed with a developmentally disabled child.

It is a wonderful analogy, and certainly does capture the experience of a parent who is living a different parenting life than was imagined or dreamed about. However...

Your child is now an adult. As comforting and empowering as the Amsterdam story is, it does not capture the experience of the parent of an adult c…