The autism “rollercoaster”…
July 20, 2011
[Gil has been complaining about his complicated life; Grandma wanders into the room]
Grandma: You know, when I was nineteen, Grandpa took me on a roller coaster.
Grandma: Up, down, up, down. Oh, what a ride!
Gil: What a great story (dripping with sarcasm)
Grandma: I always wanted to go again. You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled all together! Some didn't like it. They went on the merry-go-round. That just goes around. Nothing. I like the roller coaster. You get more out of it.
[Grandma wanders out of the room]
I have to tell you I love the movie Parenthood. Hands down a top 5 favorite of mine. The movie beautifully reflects the humor and hardships of well, parenthood and family life. Many of the scenes felt like they were filmed in my kitchen.
The movie came out before my son Jeff was born. Our roller coaster ride started when he was born, and got scary when he started to regress and lose skills at 2 1/2. And I don’t mean “ooohhh, what’s going to happen next” fun-scary. The ride had become torturous and all I wanted to do WAS GET OFF.
The tough part on our family was the transition from “normal” busy to frantic; all of us helplessly watching Jeff slip away while test after test produced no answers. Not only were his behaviors unpredictable, he had no sense of safety. If there was an open door, he was gone. He would run straight into the street, unaware of oncoming cars.
Just when we thought the ride was unbearable, it got worse. Jeff’s health changed dramatically. He stopped sleeping more than 2 hours a night, basically surviving on midnight naps for years and transforming me and my husband into zombies during our work days. Other issues cropped up starting with a ‘mobile’ rash that would start one place at 9 am and land somewhere else by noon! His stool patterns changed – dramatically (typing this feels like the biggest understatement of the world.), alternating from severe constipation to seemingly endless diarrhea.
Does the ride end soon?
It didn’t. The professional clinical evaluations came back with age equivalencies and percentiles of a 6-9 month old infant. What’s worse, all his acquired language and known words disappeared. He was 3 years old.
This incredible feeling of loss was coupled with fear. The rollercoaster kept jerking and croaking and gaining speed. We had no idea what to expect and, because we were told there was nothing we could do, we felt sentenced to a terrifying ride with no end.
In the midst of these horrifying twists and turns, my amazing husband Glen in all his calm wisdom had a brilliant idea. “If there is nothing we can do, why don’t we become the experts in ‘nothing we can do’?” And suddenly the rollercoaster began to lose just a tiny bit of speed. Glen and I scoured the internet, traveled the country and called countless folks. Some people were no help and some unlocked small pieces of the puzzle, one at a time. As it turned out, there WERE things to do – LOTS of things to do. Suddenly we emerged from the dark tunnel and we became less frightened.
We started first with traditional therapies - applied behavioral analysis, speech and occupational therapy. Jeff worked more hours a week at the age of 5 than most adults I know. Watching him work so hard inspired me to work by his side, looking for more answers.
Next we tackled his medical issues, which we slowly controlled through changes to his diet. As he started to feel better, he began to sleep through the night once more. His acquisition skills started to pick up. Soon the roller coaster started slowing down.
With all of the small victories there were also steps backwards, which often seemed more frightening than the original dark, scary roller coaster ride. When Jeff lost ground, a dark cloud covered our world. During these times I was comforted by a wise friend, who told me “If he had the skills once, he will get them back.” Soon we saw the steps backwards turn into large leaps forward.
It’s all about keeping my eyes on the prize. While the parenting roller coaster is hard for everyone, autism throws some wicked curves on the track. But hanging on- especially for that precious child I am raising -is worth the effort and the fear. There are dips on the track when my motivation fails and the fear overwhelms. But then I throttle back, find some courage and wait for the day when Jeff learns something new, smiles at me, throws a big hug around my neck, makes a new friend, or asks his dad when he can start dating girls. And I remember what a huge accomplishment it is that he can do ALL of these things, when there was a time we were told he would do none of them. Ever.
And the roller coaster becomes fun again.
Shoot – anyone can ride a merry-go-round.