There was a time, not too long ago, when Billy never asked a question. NEVER. Then, around the age of 3, he started SOMETIMES wondering about stuff that was missing: “Where’s Mama?” or “Where’s Daddy?” or more likely “Where’s Thomas and Percy and Gordon and Rheneas and…?” And another year passed.
I watched other parents roll their eyes as their toddlers badgered them with questions in the grocery store: What is that? What is that? What is THAT? But WHAT. IS. THAT?!
I wasn’t sure if I’d ever hear that kind of passionate curiosity from Billy.
Asking questions can be tough for autistic kids. To ask someone else a question, you have to first be aware they are in the room. Second, you have to understand that they have information you need. And then you need to be able to verbalize your need for information in the appropriate form. It took us several years to make our way through steps one and two.
The floodgates were opened. (Considering the location, maybe that’s an unfortunate choice of phrase on my part. Still, you know what I mean …)
Questions remain difficult. Sometimes they’re quirky and frequently oddly phrased. Sometimes he wants information that I simply do not have. Neither does any other human being on the planet Earth. His curiosity, now unbridled, runs the gamut of its own spectrum. But I take each question, however difficult, as seriously as possible and give him the best answer of which I’m capable:
BILLY: Can I watch Berenstain Bears for one hundred minutes?
ME: No, but you can watch TV for 10 minutes.
BILLY: Is brown angry?
ME: That’s a good question. (Is it? I don’t know, but I’m buying myself time.) Brown is not a very happy color, it must be said.
BILLY: Who was the man on “The Small World?” (We rode “The Small World” 5 times at Disney last summer, and unlike my son, I do not have perfect recall of everyone who rode with us.)
ME: Sorry. I don’t remember. If we see him again, we’ll ask.
BILLY: Can I have one hundred M&Ms?
ME: You can have ONE M&M when you sit down nicely for homework.
BILLY: Why is homework? WHY?
ME: Homework helps us learn new things.
BILLY: Can I have a gun?
ME: No.
BILLY: Can I have a lemur?
ME: No.
BILLY: Can I have one hundred lemurs?
ME: Definitely not.
BILLY: What are YOU feeling?
ME: A lot of things. Love, a little anxiety, humor – that means something is funny – and happiness.
BILLY: Can we go see Colin Powell?
ME: Sure, buddy. After homework. (Thank you, YouTube.)
If anyone had told me this moment would be possible even a year ago, I wouldn't have believed it. But autism or no autism, we have no idea what is possible ... Life is a spectrum, yes, but it is so much more. It has dimensions we can't see and takes us on a journey that has as many ups and downs as it has steps forward. Ask a parent to describe a moment so joyful that she can't swallow the tears fast enough, and we realize how inadequate words are to describe life. Luckily, we have more than words. We have iPhones. And we have music ...
When I first heard the “A-word,” I was devastated because I thought my child was going to turn into some kind of robot. That he would refuse to hug me, become incapable of laughter, never have friends, never know love. That's what I thought autism meant. Because at the time, I had no idea what life on the spectrum would really be like ...
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INT. BEDTIME – LAST NIGHT
Billy is tucked into bed. My hand is on the light switch when he starts whimpering.
Me: Billy, why are you crying?
Billy: I’m crying because, because… because Mama is leaving.
Me: I’m just going to my room. I’m not going very far.
Billy: Can you hug me?
Me: Of course I can hug you.
And I jump up on his bed next to him and give him a big bear hug.
Billy: (muffled, into my shoulder) Can you hug me for a hundred minutes?
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We didn’t hug for a hundred minutes, but we hugged for a long time, long enough for me to remember how afraid I’d been that he would lose this, long enough for a tiny little spark of fear to tickle at the back of my mind: Would a day come when he wouldn’t want to hug for a hundred minutes?
Of course it will. And most mothers fear that day.
If anything, Billy's autism is more about a surplus of emotion, and how to deal with it, rather than a lack of emotion. Most of the autistic kids I know seem to be that way. Billy's emotional maturity is closer to that of his 2 1/2 year old sister than his kindergarten peers. He can go from zero to sixty -- happy to to miserable -- in about three seconds flat. But he usually gets over it just as quickly.
And he’s becoming more independent every day. This new wave of separation anxiety is caused in part, I think, by the fact I’ve been working more. I'm a working mom now, and there are a couple of afternoons each week that I’m not the one to pick him up at school. I put in a full work day each Friday now, and a wonderful grad student in the speech pathology program at FSU walks him home and plays with him for a couple of hours.
I worry about being away from him. I stress that he stresses. I debate about the cost-benefit of having more money to put into therapy and extracurricular activities vs. being home with him full-time.
I’ll be honest: Working is good for my sanity. When I stayed at home full-time with both kids – which I did until fairly recently – I was a crazy person. I am not cut out for that job, because I got steadily crazier with each passing day. I never felt like I was doing a good job, never felt like I finished anything … before it got covered in something sticky and I had to wash it or glue it back together or throw it away when no one was looking. Anybody who thinks stay-at-home parents have an easy job needs a punch in the face ... and a week spent as a stay-at-home parent.
Unlike parenting, at the office, each project has a beginning, middle and end. Even the hardest job just seems so ... easy. Occasionally, I get told, “That’s really good work!” instead of having a small, running, naked person scream, “I don’t want to poo-poo!!” at me. To date, no one at my office has screamed at me because they didn’t want to poo-poo.
Of course, none of them want to hug me for a hundred minutes either.
Billy and his baby sister are thick as thieves these days ...
Reader Comments
Mr
Good day! I could have sworn I’ve been to this blog before but after browsing through some of the post I realized it’s new to me. Nonetheless, I’m definitely happy I found it and I’ll be bookmarking and checking back often!
Snippets 'N Stuff
Sweet. :)
Total 2 comments
Billy has become really interested in feelings lately. "Mama, how do you FEEL?" is a frequent question.
And he squints his big blue eyes and seems to really concentrate as I give my answer.
He seems dubious of simple emotions lately: happy, sad, silly and tired no longer cut it.
So I've tried to introduce slightly more complex emotions like frustrated, peaceful, confused, etc.
Which brings us to ...
INT. BILLY'S ROOM - NIGHT
It's bedtime. We've just tucked in, had a final story and he has said his prayers.
BILLY: Mama, what are you feeling please?
ME: (thinking about it) I feel peaceful. That's a quiet kind of happy that's good for bedtime.
He squints his eyes as though he doesn't believe me.
ME: And hungry. I have to go have my dinner now. How do YOU feel?
He considers this for a moment, staring thoughtfully at the ceiling. Then his eyes return to mine.
BILLY: I'm concerned.
ME: Concerned? That's a big word. Do you have a problem?
BILLY: Yes.
ME: Tell me about it. What are you concerned about?
BILLY: (emphatically) Mascara.
A beat.
ME: Mascara? Why are you concerned about mascara? Do you not know what it is? Do you not understand what it's for?
Another beat. He considers.
BILLY: Yes.
ME: Well. Mascara. It goes on ladies' eyelashes to make them ... um, darker and longer ... it's kind of like ... paint?
Billy's look has evolved from concerned to what I would call "alarmed."
ME: It's dress-up. Let's just leave it at that. No cause for concern, OK? Absolutely nothing to worry about with mascara.
Then I kiss him on the head and turn out the light.
BILLY: (in the dark) Mama? Are you peaceful?
ME: Yes I am.

very good
Monday April 30 2012 02:57:30 pm
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I debate about the cost-benefit of having more money to put into therapy and extracurricular activities vs. being home with him full-time.Nice information, many thanks to the author. It is incomprehensible to me now, but in general, the usefulness and significance is overwhelming. Thanks again and good luck..
Mr
Tuesday March 13 2012 09:22:35 pm
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Good day! I could have sworn I’ve been to this blog before but after browsing through some of the post I realized it’s new to me. Nonetheless, I’m definitely happy I found it and I’ll be bookmarking and checking back often!
Friday December 09 2011 11:15:13 am
Paula Kiger
I just found your blog (thank you Twitter! Thank you FSU Film!). This is a very heartening recount of your "hug" time and it made me feel like I was right there experiencing that wonderful moment with you. Will send supportive thoughts as you continue on your "working mom" journey. I still struggle with it every. single. day. (And my kids are 12 and 15). We all just have to help each other out!!
Mr
Thursday November 17 2011 02:31:18 am
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I'm the stay-at-home parent here, and you sound perfectly sane to me. Despite all the chaos, you are all to well-grounded in reality.
MR. Jen
Tuesday November 15 2011 10:09:16 am
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I think you are right about parents that have never been at home full time.....
Mr
Tuesday November 15 2011 01:54:10 am
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I'm the stay-at-home parent here, and you sound perfectly sane to me. Despite all the chaos, you are all to well-grounded in reality.
Friday November 04 2011 03:35:40 pm
Shannon Connaughton
I miss you guys! Hopefully I will come to visit tally soon and be able to see the kiddos!
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Tuesday October 25 2011 11:20:49 pm
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Well...Congrats on creating me get all teary eyed at the start of this post and then ending it on a cheerful note that place a smile on my face.
Total 13 comments