“This is the fear, this is the dread, these are the contents of my head.”

For the last year or so, I’ve seen lots of lighthearted Facebook updates from my mom cohort jokingly complaining about how their kids won’t stop asking questions.  At around 3, most kids hit the infamous “why” stage, memorably reinacted by Louis CK in the clip below:

So, my friends would post examples of the endless questions their preschoolers were bombarding them with, and I would laugh and reply with “shut up and eat your fries!” because it’s funny, it really is.  But every time, a little part of me would deflate and wither, because my preschooler had never asked a “why” question in her life.  There would occasionally be other questions (“are you” “is that” “can i” etc. etc.) but very few “wh” questions and literally no “why” questions.  I looked online and found that this was very common in kids with high-functioning autism, even kids who were highly verbal, like D.  This was heartbreaking for me, both from an obvious developmental standpoint and a…well, look.  You’re dealing here with two parents who have an absolutely silly number of post-secondary academic semesters between us.  Asking questions is the foundation of learning.  Inquiry is so important to both of us.  It was hard to wrap my brain around the idea that my child might lack the ability to question.  How do you learn without that curiosity?  Was she just innately incurious?  Or was she dying to learn more but had no idea to even go about pursuing such a thing?  The whole concept was anathema to me.  She is clearly very intelligent, but without the ability to question, she would lack the necessary motivation to pursue knowledege.

Back in the winter, we started D in private speech therapy.  Just one session a week, alongside her occupational therapist, in what they call a “co-treat”.  The goal was to work on pragmatic, or social, language.  We also made “wh” questions one of her measurable goals in behavioral therapy, so her line therapists would actively model question-asking in an effort to encourage her to follow their lead.  I had gotten so frustrated with her inability to understand the logic behind question-asking and -answering.  If/then, why/because…it was all topsy turvy. Imagine this conversation, over and over again, for two years, trying to “parent with love and logic”:

Me: “Do you understand why I’m upset with you?”

D: “Because you yelled!”

Which of course just made me want to yell more.

It came slowly, and it took me a while to notice.  There were little things, just moments where she would show interest in others.  One day she pointed (pointing was also a big challenge — non-verbal communication skills are almost universally delayed in kids on the spectrum) out the window at her therapist’s van parked on the curb.  “Is that your car?” she asked.  It wasn’t a “wh” question, but it was a question that she had clearly constructed from scratch on a topic that had nothing to do with her.  She was randomly curious about someone else’s life.

Then there were more and more.  “Where are we going?” “Who is Kat?” (about my friend who she knows as Katherine but who I almost always call Kat) “When can we (x)?” “What is (x)?”

And then the Whys came.

I can’t even remember the first why, but they’re here now.  They started out as “Why can’t I (x)?” but moved on to “Why is (x)?” “Why does (x)?”…they still haven’t reached “shut up and eat your fries” territory, but more and more she wants to KNOW, she wants to UNDERSTAND.  And even though her fundamental comprehension of big ideas like time and space are still more delayed than other kids her age, she’s suddenly more eager to learn.

And it hit me a couple days ago that parenting is about to get so much more complicated.

I was spoiled by the fact that I could talk about things in broad terms and she would never ask for more specifics.  I tried my hardest not to talk about her like she wasn’t there any more than any parent has to; I presumed that she was listening even if she didn’t seem engaged.  I presumed she understood.  I presumed competence.  But I totally took for granted the lack of follow-up questions.

Suddenly I’m realizing that I will have to have all the big confusing conversations with her that most parents have with their kids.  Conversations about death, about sex, about how things work in this world.  Part of me honestly thought she might just never want to know, or at least she would accept what I told her and not push me to explain at more depth, or debate my assertions.

One day, one day much sooner than I was prepared for, I will have to explain to her why she takes her pills.

One day, I will have to explain to her what autism is.

I am split between ecstatic joy at seeing my child exceed our expectations and abject terror in the face of having to explain something like that to a little girl.

“Your brain works differently.”

Yes, but how?

“Certain things in life will be more challenging for you.”

Yes, but WHY?

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4 thoughts on ““This is the fear, this is the dread, these are the contents of my head.”

  1. This entry brought tears to my eyes. I want you to know that you are doing a wonderful job. D is lucky to have you as her mama. The insatiable curiosity you and your husband have will be the key to her being happy and healthy.

  2. My best friend has two children. One daughter, M, now 16 (every bit of the cynical know-it-all 16 year old grrl – it’s killing me) and one son, D, who just turned 8. Her daughter was highly verbal as a youngster, asked a ton of questions about a ton of things you wouldn’t expect from a kiddo. Like the time she threw a temper tantrum at age 3 because the cable got turned off and she couldn’t watch C-Span and she spent the next hour explaining to us all of the things she was missing, or the time we had to explain property taxes to her when she was 7 which lead to a discussion about democracy and civilization and social duty, or the time she asked for her own subscription to the Oklahoma Bar Journal because who knows, she might consider being a lawyer at some point. She’s a really super smart, unique kid. Then we got D. Cute as a button and cuddly when he wanted to be, but he didn’t talk until he was 4 (he would mutter under his breath whatever it was he wanted to say, in impeccably clear speech, as if practicing for the real thing just not ready to do it) and he wailed uncontrollably every time the landscapers ran the mower at their apartment complex – even when it was across the parking lot – because of the noise. He was FINALLY diagnosed high functioning autistic this past year (which is going to change a lot of things at school, thank goodness) and my bestie finally found him a fantastic therapist who works with D and with her and seems to really get it. D doesn’t ask very many questions. Certainly not as many as M did when she was his age. But when he does ask them, and this is the whole point of my lengthy rambling, he always gets the truth. The age appropriately worded truth, of course, but the truth nonetheless. There are times when he cries because the kids at school are beginning to pick up on how different he is and how malleable he can be in social situations. It’s really hard for him to understand. Sometimes he’s not really sure how to ask the questions that will get him the answers he’s seeking. Sometimes he just gets frustrated and doesn’t know that asking a question or talking about it will bring some understanding. But my bestie talks to him, very calmly and very respectfully. She’s not the best at “nurturing” – that’s really her husband’s job and he does it splendidly. She’s the one they talk to, not really the one they cry to. And I think the best thing she does, for both of those kids, is be as honest as possible. Because at the end of the day, and she and I talk about this a lot, we can’t protect D or M from the big bad world or the jerkface people in it. But we CAN be someone they trust, she and her husband can make their home the safest place in the world for their kids to be themselves. And in this big bad world that can make a world of difference to a kid who feels the isolation of being “different” without really being able to verbalize or understand it. I love your heart and your brain. Your kids are very lucky to have you for their own.

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