First Day of OT

Charlie's first OT session was yesterday. He had a one hour session with Miss Megan. Things went pretty well. This was primarily a get to know each other/get acquainted session where Miss Megan can start to get to know Charlie and what he is and is not capable of as far as fine and gross motor skills. He did exhibit some selective hearing, but she quickly learned it was not because he did not understand, it was more that he wanted to keep doing a certain activity and did not want to move on (especially the ball pit, which, apparently he liked a lot). They worked a little on drawing and writing. He much preferred the gym (no surprise there). Charlie will go twice to OT next week and will then go pretty regularly on Mondays and Thursdays.

Addison and I stayed in the waiting room while Charlie had his session. So much fun to be in a waiting room for an hour with a very busy 19 month old! Actually, Addison had a great time "playing" with all of the kids in the waiting room and going around handing all the parents/grandparents toys, books and pamphlets.

I am getting quite an education through this process as I am being exposed to a population I knew nothing about before this. I know I've said it once, but I will say it again (and probably again and again), it amazes me how alike, and yet so different, kids on the spectrum are. While waiting for Charlie there was another little girl in there, who I later found out is in second grade, waiting for her session to begin. She reminded me a lot of Charlie in certain ways -- she was singing songs and repeating some things, she definitely preferred to play be herself and when Addison approached her to try to play with her or take her toys (which she did repeatedly), she either ignored her or was very passive with a barely audible "no." But she loved to watch Addison and I playing on the other side of the room. She would watch us with a little smile on her face. Then, one of her schoolmates came in that she knew and she was almost a totally different kid. She took off her sunglasses and visor (I assume she has some sensory issues to light and that's why she was wearing it) and was almost flirting with this little boy and flashing smiles. She started talking about how Addison was so curious and getting into everything. It was really quite cute.

There was also a little boy in there who had some serious anger management issues. He was building a tower, and, of course my daughter knocked it over. He ran into the corner and screamed and shook and just looked like he would generally explode. His grandparents had to take him outside repeatedly because he would not calm down. Yikes. Such a wide array of personalities.

On a personal note, I read a wonderful essay the other day by Jack Zimmerman, the husband of Dr. McCandless, the author of Children With Starving Brains. Boy did this hit home for me as he voiced an internal struggle I have been dealing with since we first found out about Charlie's likely diagnosis. . . and that is the whole concept of "fixing" or "curing" your child. No matter what, I think Charlie is perfect. More than ever, this experience makes me question societal ideals of "normal" or "neuro-typical," etc. Fact of the matter is, I don't care that Charlie is a little different, I fight with myself over this idea of intense treatments to heal him. Isn't this placing our ideas of what is normal or socially acceptable on this little boy who can't really voice his opinion? When I really think about it, I don't know that many people, if any, who are all together "normal." We all have our weird quirks about us, some more so than others. While I cringe at the idea of Charlie having a hard time, I also think this will open up doors for him and present new opportunities that would not otherwise be possible. It's strangely exciting to think of how he may see the world. Is he really visual? Will he be able to see things that we "neuro-typical" people cannot? Or maybe he will just have a different interpretation that may shape a whole new way of thinking. He will have struggles that "neuro-typical" children won't have, but in the end, I think this only makes him a better person. And I want to ensure that we provide every possible mechanism to allow him to be happy and successful.

Zimmerman concludes that, yes, we have the right to "heal" these kids, if and only if, we agree to make a life change that is just as profound as they are making through the healing process. I could not agree more. I think this has already begun for me. I see the world very differently now than I once did. I have learned the lesson of acceptance and a whole new dimension to the emotion of love. Zimmerman wrote the following poem about his granddaughter Chelsey, who is autistic. I think it is beautiful and summarizes some of these issues quite well:


INVITATION
a poem written by Jack Zimmerman
Come, take my hand
So I can find you in the eye of the whirlwind
Calling medicine back to its spirit home
And welcoming the lost tribe of children
Our little adept among them
As you keep reminding me, we need to work from another level
Which means creating an entire heartscape, nothing less
Chelsey is waiting—I see the message in her big browns
“Only full surrender satisfies my mission.”

Take my hand—again
As at our birth when you led me out
Of a flat world into the delights and shadows of Eros
Now, our toes curled around the edges of the past
We hesitate, seeking a still greater revelation of Love
Are we too heavy with treasured wounds and attachments to fly
Or is it fear of the demons at the doorway to ecstasy?
No matter, our courage will soon rise to the new occasion
Since it always starts with, “Gramma--Grampa will you dance with me?”

And so leaps of faith and healing are merging movements
Connecting you and Chelsey inside the Mystery
That we touch as well when our trust is great enough
To fall more wildly into Love’s uncharted forests
And then to guide us into the clearing of our hearts
We can create similar shamanic celebrations
To re-awaken our unrelenting messenger
And so embrace her healing with enough persistent passion
To wholly feed that starving brain

This enlightening of our aim to cure
Will see through the harvest of impaired immunities
Into the innate wholeness of each ancient soul
So too our little Buddha, our Christ Child, asks for recognition
I heard the call again the night I phoned to celebrate her tenth
She said, “Hi, Grampa” in that soft and rounded voice
That opens my heart and wild eyes to smiling
She waits for us to leap and doesn’t need fixing
As much as being met half way with laughter

“Here, take my hand”
Excites the biggest grin of all
Since she’s been longing for our commitment
To meet in Rumi’s field together
That consummation meets her challenge
To claim our fullest lives while still embodied
“But words don’t matter,” she says, “The joke’s on you
“You jumped a long time ago and have been falling forever
“There’s nothing else to do.”
February, 2004