There’s hope and then there’s desperation. Often I am not sure which one is pushing me more. The feeling that with each year Emma grows older, the farther she is from her neuro-typical peers or the knowledge that others have progressed and come so far, therefore so shall she with various interventions. At what point does hope turn into desperation? At what point do you say, okay this is crazy, let’s stick with what we know works and stop pursuing the next treatment option. How do you quell that irritating voice that is always urging you on? Or am I being presumptuous? Perhaps that voice is MY voice and not shared. I always look to the couple of parents I know whose children have made massive leaps in progress. The ones who have bypassed Emma, what did they do, that I haven’t? And many times it seems to be a combination of things they did, often things we’ve tried, but that haven’t helped. I even found myself saying this morning – I’ll keep this appointment with the thyroid doctor, but after this, no more! That will be the last alternative thing we try. But I’ve said this before. I said that after the stem cell treatments. I said that after the QiGong Master and again after the homeopathic doctor. I’m pretty sure I said that after the Cranial Sacral/Shaman too, but I can’t remember for sure. It’s my own version of Emma’s carousel. Around and around we go, where will it stop, nobody knows.
This morning I stood in the shower with Emma, coaching her on washing her hair and body. We’ve done this countless times before. “Okay Em. Grab the shampoo.” Wait while she takes the bottle of shampoo, opens the top and pours some into her hand. Wait to see if she will lather the shampoo all over her head or just on the ends. “Good, Em. Now make sure you get the shampoo all over your head too.” Wait. “Go like this Em. Do what I’m doing.” Demonstrate how to get the shampoo lathered all over, including the hair just behind the ears. Wait to see if she’ll do this on her own. When she does not, help her. “That’s great Em. Now rinse the shampoo out of your hair.” Wait to make sure she gets all the shampoo out. “You have to rinse it all out, Em. You have to make sure you get the shampoo out up here too.” Point to her scalp. Wait. Try to ignore the urge to do it for her. “There, now rinse.” Wait. Wait some more. Wait to see if she will do it on her own. Try not to help if it isn’t needed. Try not to do things for her because it will be easier, faster or because I’m tired or just don’t want to watch her painstakingly try, only to still require help.
At what point will these instructions no longer be required? And then the question that is a lesson in futility and despair, the question that always manages to creep into my thinking, even though I know better than to ask it because it’s a waste of time and only makes me feel the beginnings of panic – What if that point never comes?
Don’t go there – I tell myself the minute that question enters my mind. Do not go there.
So I won’t.
A friend of mine’s husband was just diagnosed with Alzheimers. “This story isn’t over yet,” she said to me the other night.
And neither is ours. Not by a long shot. Emma has her entire life ahead of her. An entire life of one day at a time, one step at a time. And that’s where there’s hope.
There is always hope.
For more on Emma’s journey through a childhood of autism, go to: www.Emma’s Hope Book.com