A Page of Hope

Posted by Thomas McKean in Self Advocacy on 09 30th, 2009 | one response

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Today as I write I am considering prescription insurance. The “doughnut hole” has kicked in for me and meds have gone through the roof. $781.59 they wanted just for thirty days. No pain pills for Thomas until January.

I have hope that someday it will be like before, and I won’t need them.

During my three years in the hospital, there was a patient named Dennis. He had a severe case of Tourette’s Syndrome and also a lot of OCD. He used to walk around the hospital with his screaming tics and bad words and he HAD to touch every single doorknob he passed. He appeared hopeless to many of us. But as time passed, Dennis got better. It was amazing to see him turn his life around, even if he had to do it with those tiny steps he took. At first they really didn’t amount to much, but with one step after another after another, eventually we began to notice. Dennis used to go into the recreation room and put on the Styx “Grand Illusion” album and sing with it at the very top of his lungs. He did that even later on just before he left. I can still hear his voice:

I’m sailing away. Set an open course for the virgin sea. I’ve got to be free. Free to face the life that’s ahead of me…

Lisa was also there during that time. She was anorexic and suicidal. She got better as well, kicking both her anorexia and her depression. She left a year before I did. Just as her life was better than it had ever been, she was violently killed. I still miss her.

The progress she made before her death (at age 17) is still an inspiration to me.

Dillon didn’t talk much. Or so his mother told me. He was quite the quiet type. Old enough for language, but no language was there. Very common with autism.

But then one random day, a day that started like every other day, Dillon and his mother were in the car. Mama put in JoAnn McFatter’s “Raging Beauty” CD, which I had given her. Then she heard a sound. It was a different sound. One she had not heard before. When she finally placed the sound, she could not believe Dillon was singing along with JoAnn!

I heard the sound of lovers singing, and I wondered at their song. Hopelessly lost in each other, their gazes locked for so long. I longed to know what they knew, but then I caught a glimpse of you…

We finally caught a glimpse of Dillon, who has had language from that day on.

I used to worry that I was a source of false hope. Parents everywhere have told me that because of me, they had hope for their children. I was uncomfortable with that for a long time. I wondered if somehow, just by existing, if I was getting hopes up only to have it be false hope later on. Just because I fought my way through some of this, that didn’t mean Johnny over there was going to.

But then as I traveled I started seeing the miracles. One by one they appeared. The hopeless emerging. Usually it happens just as it did with Dennis. With tiny steps. Even now, on www.neurointegrity.com , still it happens. The posts get positive.

Toby said his first sentence today!

Joey went in the potty today!

Mark told me he loves me today!

Tiny steps the world wouldn’t notice when they are old enough to be passed this, but which still mean the world with autism.

It has happened with other kids and it can happen with yours. When you least expect it, just one tiny step can open a door in his head, and soon those steps begin coming faster and faster.

It is altogether lovely.

I never get tired of seeing it or hearing about it.

Remember there is hope. These kids have a knack for surprising us when we least expect it. Join us at www.neurointegrity.com to read stories of hope and to post your own positive stories to help give hope to others.

Hope is a good thing, and we need all we can get.

Please share the knowledge. Sharing is caring! = )