I was reading an article this morning on RNA interference when the following quote by a pharmacology professor caught my eye – “A lot of excitement for RNAi was irrationally high to begin with, and now is irrationally low.”
It reminded me of how I have felt each and every time we have gone to South America for one of Emma’s stem cell treatments. In the beginning I am elated, sure this will be the thing that causes her to crawl out from beneath the fog of her autism. Then after we’ve returned home, I am guardedly hopeful, watching, waiting and after a few more weeks I’m convinced the whole thing was an exercise in heartache, stress and worry.
I go from the extreme high of wishing myself into believing this will prove a miracle to the low of believing it’s a complete waste of time or worse. What I have not managed as well is that whole grey area residing between those two states. Which is why the brain scans are so essential. Though I have moments of disregarding those as well. If I relied entirely on my perceptions, often clouded by feelings, desires, wishes, expectations, I would be making some very poor decisions.
We have been working with Emma on her handwriting and teaching her to type using a program developed by a literacy specialist. It has proven to be quite an incredible experience. Emma is now writing legible letters and is able to match two and three letter words. She is also learning to type on a computer keyboard.
A couple of things I’ve realized:
1) Most written words are written in lower case letters, yet most writing programs teach upper case letters first.
2) All the letters on a keyboard are in upper case, making it very difficult for a child to translate the letter from lower to upper or vis a versa. Something I had never “noticed” before until we began working on typing with Emma. She is getting the hang of it, but it’s been interesting.
3) The letters Gg, Qq, Ee, Rr, Bb, Dd and Aa are completely different depending on whether they are in lower or upper case.
As I am not a teacher – these rather obvious items I’ve listed are something I had taken for granted until now. I am amazed how well Emma is doing. She seems to understand the same letters can look different and yet are the same. But, and I do need to say this, Joe and I have been working with her for a number of weeks now and I was feeling discouraged that she wasn’t progressing as well as she should. She still has trouble writing the lower case letter e. K is often difficult and she makes her lower case s too big. We needed to tape one of my sessions with her to send to the literacy specialist who developed the program (Joe did a great job taping) and Richard was the one who transferred it into a file we could email.
When I got home last night Richard said, “I edited the tape. Emma’s doing really well!”
“Do you think so?”
“Oh yeah. It’s amazing!” Richard’s excitement was so authentic, it made me wonder why I wasn’t “seeing” it.
“Really?” I asked again.
“Yeah! She’s doing great!”
That conversation was one more example of how two people living with the same child can view that child’s progress very differently. My expectations are something I need to constantly keep in check. If I look at the tape of Emma and how she is moving forward in a number of ways, I can see the progress and it’s impressive.
If I then compare Emma to what Nic was doing at her age, I am back in despair.
“So don’t do it,” a friend of mine said the other day when I related this.
And that’s really the point. Living in the grey is sometimes a lot harder than one would think.
Emma's Hope Book 