For three and a half years I have been writing about Maya, about her challenges and triumphs, about our fears and worries, about school, about therapy and once in a while some politics and a recipe thrown in for good measure.
The other evening Leo and I had an appointment with Maya's occupational therapist from her after school sports/therapy program. It's the first that we've met with the therapist. They have been observing Maya for the past 4-ish months and are putting together a treatment plan for her for this year and wanted to get our input. I will save the details of the meeting for another post but, maybe it is a Dutch thing, but Leo and I never seem to get out of these meetings without being asked, what is it you want for your daughter?
It's both the best and most terrible question you can ask a parent with special needs. The best, because it takes what you want into account and tries to factor it in to the treatment plan (like there's a direct link between putting together sticks and ball puzzles and admission to Harvard Law), and the worst because you always end up giving an answer while blinking furiously and trying super hard to control your voice so the tears you are trying to blink back don't come out your mouth.
Leo and I both have stock answers for this question which have been perfected over time and allow us to be truthful but to largely sidestep an emotional scene (Leo cries at the drop of a hat, ha ha).
Although honestly, we have spit these out so many times, over many years in different ways, that they have essentially become meaningless, the same way that a retail store clerk in the US really doesn't give a sh*t how you're doing today.
Our answers to the question are different, because we are not the same person and although we want the same things for Maya the way we express them is different, largely because of the differences in our anatomy.
Leo's answer: I want to help Maya however we can and hope that one day she will be able to catch up to her peers, go to university and live independently. Man answer.
My answer: I want to help Maya achieve her fullest potential, regardless of how high or low that is.
That about covers it, right?
Still, that question, what do you want for your daughter haunts me. Not just since this meeting, but really the whole time since she has been diagnosed. When you have a child with special needs, you constantly question if you are doing the right thing for your child. Are you doing enough, are you doing too much? Is it the right thing? What about this-kind-of-therapy and what do the experts say now?
Leo and I have taken a balanced approach to Maya's therapy and so far she has made steady progress. That's been a comfort, but no matter what you do or don't do, you don't get a lot of peace of mind.
Like last week, after I posted that blog piece about our balance, I had a few commenters publicly and privately say my approach was dangerous, that I was advocating dealing with autism with a "wait and see attitude" and hoodwinking other parents into believing there is something wrong with therapy.
Well, when I am Jenny McCarthy and can wear a string bikini on MTV and not look like I am one of those Wal Mart people, and can get a job on The View, I will worry about my influence on other parents, for now, I am just me. This is what has worked for us, all other parents out there need to decide what is good for them. Period. I can accept what is good for another child/family may be different than what is good for our family. Accepting another autism reality doesn't threaten me or my approach one bit or denigrate our own journey.
What do I want for my daughter? Well, this is the best I can come up with right now:
- I want her to achieve her full potential. Whatever that may be.
- I want her to understand that happiness is not something that happens to you, it is a choice.
- I want her to understand that everybody goes through difficult times, what matters is not the degree of difficulty but how one can learn and grow through trying times.
- I want her to understand that we all have our challenges, not only her, even those people that seem to have everything have difficulties.
- I want her to be gracious to others and appreciate that even though it may be difficult to see sometimes, there is a lot of kindness in the world.
- I want her to be ruled by her own heart and mind rather than doing what others think she should do.
- I want her to not hold herself to impossible standards and easily forgive herself for the mistakes she will make.
If she can do that, no matter where she ends up, my baby girl will be okay.