— Barbara Kingsolver Animal Dreams
I would like to believe that people are fundamentally good. Although I admittedly find much of the population to be somewhat annoying; I really don’t think that man is for the most part intrinsically ill-willed. Particularly doctors. It seems reasonable to assume that people become doctors because they have the desire to help others; and it follows that those who go into the specialized fields of developmental medicine and pediatric neurology likely have the best intentions to serve our children.
So I will give them the benefit of the doubt and presume that when they try to moderate our expectations around what our children will be able to achieve, they do so for what they believe are the right reasons.
HOWEVER, no one has the right to take away hope. NO ONE. Capitals? Bold? Underlining? How best do I make the point that this is something that needs to be shouted from the rooftops?
No one has the right to look at my friend’s five year-old boy and tell her that he will never have language. No one has the right to tell a parent that there is no point in pursuing further therapy. No one has the right to look at a three year-old little girl and tell her parents that she will likely live a solitary life.
Didn’t that last sentence sound absurd? I ask you to read it again.
When we initially had Brooke evaluated, it was by a very well-respected doctor at a well-regarded facility that is associated with one of the most highly renowned hospitals in the nation. When the doctor first delivered the news of her diagnosis, Luau and I were reeling, as any parents would be. As we fought to regain our balance, we asked whatever questions we could manage. Some of them were practical. Some of them were theoretical. All of them were born of the shock, confusion and terror that comes with hearing that your three year-old daughter has autism.
Luau asked the doctor, “What does this mean down the line? What does this mean as she gets older – let’s say at ten? At eighteen? What will her life look like? What does this mean for her as an adult?”
The answer to all of those questions should have been, MUST have been, “I understand your concern and your desire to prognosticate; but I have no way to tell you what she will be like at any of those points in her life. There are myriad strategies and therapies to employ. There are endless variables. There is no way that I could possibly look at an untreated autistic three year-old and tell you what she will be like as an adult, no more than I could look at her older sister and tell you what she will likely do for a living.”
Luau’s questions were as completely understandable as they were totally unanswerable.
However, the well-respected doctor in the well-regarded clinic attached to the well renowned hospital looked at my husband and said the following,
“She will likely live a very solitary life. She will not be comfortable around people and will most likely live alone.”
How dare she? Let me say that again. How dare she? Which document on her wall came with a crystal ball?
I knew in my gut that she was dead wrong. I knew from the moment she said it that it was NOT the Brooke that I knew that she was talking about. My baby loves people. She craves social interaction and her desire for it couldn’t be more obvious to anyone who is looking for it.
Back then she had absolutely no tools to interact appropriately; but I’ll be damned if she wasn’t trying. She would say half a word and then eagerly wait for us to fill in the other half. THAT was Brooke’s dialogue. From the very beginning, she was trying to reach out.
When we entered the school system, Luau and I presented at the very first IEP meeting fresh from that evaluation. I choked up as I tried to tell the roomful of educators that this is what we had been told but that I knew that the doctor was wrong. “She just needs the tools,” I said. “I know the doctor is wrong.”
I will never forget the moment when the school’s staff looked at us knowingly and in a chorus of affirmation said, ‘We have a whole shed full of tools and we’ll teach her to use ‘em all. We live for proving doctors wrong. It’s our favorite thing to do.”
Brooke’s preschool celebrated their last day of the regular school year today. Although she will continue at the school through the summer, it was still a momentous day and the teachers did a wonderful job of commemorating the year. The lead teacher gave each of them their own handmade ‘yearbooks’ showing their (astounding!!) progress and then created award certificates for each of them.
There was an ‘expert block builder award’ and a ‘best trampoline jumper award’. Each child received a special certificate detailing and celebrating their particular strength.
Brooke won the award for the ‘most caring friend.’ She was described as sweet and compassionate and an amazingly caring and concerned friend. Well, guys, you proved that (expletive deleted) doctor wrong in spades.
Together we all proved the insanity of extinguishing hope.
We must not – we can not – let anyone make us doubt what we know is possible. Our children deserve more than that. My ‘most caring friend’ sure does.