The Greatness of Family

This is the face that breaks my heart. It is the face of sadness, fear, anxiety, and social withdrawal. It is the window to Ian's feelings of inadequacy, of being different, of being alone.

Ian's summer has been difficult. We've been using this time to try to determine which medication will treat his bi-polar disorder the best and have the least side-effects. We've seen plenty of those, from facial tics to stimming. Even he realizes things are different. He is scared.

There was a man in the first autism support group I attended 3 summers ago, whose son had severe bi-polar disorder in addition to his high functioning autism. When he would tell us about the monumental difficulties he and his wife had with their son, I felt so sorry for them all. The cabinet full of medication that must be administered precisely on time to prevent complete chaos from erupting was only one factor taking its toll on them. The father was exhausted, as was the mother, and the boy seemed to feel tortured within his own body and mind. At the time, I was grateful Ian only had Asperger's and sensory issues. I had no idea that my own family would one day face the same scenario. Strangely, I don't feel the same way about us.

When we first arrived in Denver on July 3, the kids were tired from the long drive, yet energized by the cool, dry air and soft backyard grass they had to run in at my aunt's house. They did pretty well for the most part. The next day, when we returned to the same spot after our family reunion at a park located close to Columbine High School (yes, the very one), Ian felt easily overwhelmed. The tic that caused his mouth and jaw to grind wreaked havoc on his sense of self-confidence, and he took refuge in a dark corner of the house to play with toys. At one point, he got into a scuffle with an older cousin over a nerf rocket. Steve had to physically restrain him from attacking the other boy. Ian started growling like a vicious wolf and scratched, kicked, and bit Steve. He was going over the deep end quickly.

I stepped in, slid my arm gently around Ian's waist, nodded for Steve to let go, and glided him slowly to the ground. After positioning him in my lap like a baby, I began stroking his hair and rocking him, until his body went limp. I wasn't about to let my son alienate a cousin over a piece of foam. The sooner he was calm, the less damage would be done. If there is one thing I have learned in 40 years, it is that cousins in my family will love you and accept you no matter what you do or how dorky you are - as long as you don't throw a punch. Ian needs to feel that kind of acceptance.

The rest of the evening went well for Ian. For the first time in his life, he stayed awake to watch the fireworks.

He sat in my lap on the cool grass, watching the colorful explosions, and thought they were the coolest things he had ever seen. Every once in a while he would squeeze my arm, partly out of surprise at the loud cracking and popping, and partly as a way of letting me know that moment was as special to him as it was to me.


Watercolor entitled: "Cool Canyon Morning"

When Life Gives You Lemons

Welcome to the week from hell. Some days it doesn't matter what you do to make a difference, nothing will help because it's the weather's fault. It has rained every day for almost a month, and my kids have had enough already! Especially Ian. He has always needed sunshine to keep his moods in the happy range. Rain makes him intolerably blue.

The tricks we have for snapping him out of these moods are not working. Steve and I think the new medication, Geodon, has something to do with it. There is a new mouth-thing that he does, sort of like mouthing words he isn't saying aloud. He taps his finger tips together a lot now, something he never used to do. At the beginning of the week he seemed very stable and happy. Now he can jump off the deep end unexpectedly. When this happens, Steve and I look at each other, he rolls his eyes and I do the silent "oh, shit!" We take a deep breath and try to get Ian through this rant without any major damage occurring.

During the calm periods of the week - there have been a few - Ian and Ainsley have been playing with the Thomas and Friends train set almost non-stop. They build tracks and make up their own versions of the movie Thomas and the Magic Railway. Although neither of the kids seems capable of explaining why the sudden rejuvenated interest in this particular toy set, I have a couple of theories.

Thomas has always been a source of comfort to Ian in uncertain times. Before the initial diagnosis over three years ago, the trains were his obsession, the one thing he could talk about with authority. He could line them up and make them do the same thing over and over again. The Island of Sodor was his safe place. I remember one summer he begged us to take him there. We could not make him understand that it was an imaginary place, that it didn't really exist beyond the table in our playroom. He cried. He pleaded. He wanted so desperately to be among the trains that he understood and that most certainly understood him. I think that now, as Ian is experiencing chemical changes in his body because of the Geodon, perceptual changes of the world in what should be a calmer state of mind, and the uncertainty of a long summer with camps, vacations, down time, and the wonderment of second grade before him, Ian is retreating back to the Island of Sodor where he knows stability and comfort. Life is simpler there, and he can control what happens. Actually, I wouldn't mind joining him.

Now that Ainsley is not only interested in the trains but also capable of participating in the creation of stories, Ian has a ready playmate who is eager to please. She defers to his knowledge and goes along with his ideas most of the time. But get out of the way where Lady is involved. Nothing starts a fight between the two of them quite like possession of the "Lost Engine" who runs on gold dust.

This morning Steve and I heard quiet coming from upstairs and were unsure if this was cause for alarm or celebration. So we poured two bowls of cereal and took them to the media room where the kids were sitting in the dark watching "The Thomas Movie". As we were leaving the room, we realized they had started watching at the last 10 minutes of the story. Ian said it was so they could watch the chase scene. Oh, brother! Guess they needed a refresher so they could recreate the destruction for real.

Then Steve and I looked at each other, and both of us thought simultaneously, "We have 10 minutes. . .get downstairs. . .FAST!"

It's funny how you learn to take advantage of those moments.