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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Tuesday, April 11, 2006

 

A Perfect 10

It was Adam’s fourth birthday today. He began the day early at 4:30 a.m. and despite the fact I just want to lie down and rest, the day, the thoughts, moved on. Adam started his day by typing his first and last name on the computer. I wrote that he was four years old, that it was his birthday. We got dressed and sauntered down the steps and moved in our usual way toward breakfast. I gave him a magnetic calendar for his first present – he knows all the months and I would like to use it functionally. I was excited to give him a gift, trying to make a connection between the word “birthday” and his day. He tore open the paper to my delight, picked each month and recited it, in between a few bites of egg, sunny-side-up. I rustled about the house as usual, getting ready for school. We packed up our knapsack and chocolate cake for his friends at snack time, and I bellowed “Adam school time, go get your shoes.” He headed for the door, but insisted on bringing the number 10 from the calendar. It was quite an issue – he wouldn’t let go of that number 10. I didn’t want him to lose it – the calendar wouldn’t be the same without it. I tried to trade him the number 10 from the calendar for a 10 of spades from a nearby deck of cards. He liked that, took it, but still wouldn’t give me that other 10, holding it with all his might in his tiny fist. I told him that he couldn’t take that 10 to school, and felt my temperature rising as he yelled and protested. I told him we were going to school and he could see that 10 when he came back home. Eventually, reluctantly, I got the 10 and stashed it away before stuffing ourselves into the car.

It’s hard to set boundaries with any child, not to mention one who has autism. It was his birthday, and I wanted him to be happy, not sad. I know he used to get stuck on numbers, but I also knew that I just gave him a new toy and any child would be a little obsessed with something new and not want to let it go.

On the drive, I opened the window for the cool spring breeze against my reddened face, the route always the same -- the only difference in the change of season, the winter that finally turned to spring, the new brand gleaming convertibles on the road, the rising gas price. I wanted to cry, I don’t know why for sure. The dull yet calming repetition or our day? Our upset? I thought how if I called someone to give me advice, perhaps they would treat Adam’s protest as a “behavior,” that if I mentioned the incident, he would be the targeted culprit and not the fact that I stupidly gave him a gift at a rushed breakfast right before school. The “behaviour” would be addressed with rigorous, unwarrented “procedures." At the same time, as he continued to yelp in the car, on and off, I wondered who was there to support me. No answer would suffice this morning. As a parent, if you ask for help, you don’t always get what you want. If you don’t ask for help, you feel alone. I often don’t want to hear those answers that never quite fit the situation, so I tend not to ask unless I'm in a more resilient mood. Often, if you ask a simple question, you receive a deluge of unsolicited parenting-of-autistic-child advice. Sometimes it’s just better to sit with all your mixed up feelings until the answer comes to you. Sometimes, it’s better to just be a temporarily confused parent -- feelings, guilt and all.

I have another birthday party for Adam on Saturday with four other autistic boys and a couple of other friends from the class and the neighbourhood, my first big Passover Seder to host tomorrow, art installations, and lots of other things on my plate, like us all. When Adam begins to protest, it’s usually when I’m too busy to be as patient and attentive as I would like. When I’m too busy, it is a sign to slow down and attend to Adam and the things that agitate me.

Adam and autism certainly leave me with lots of questions, problems to solve, people to manage, convince teachers and others about ability, programs to coordinate and more. The questions can be overwhelming at times, Adam’s will and protestations a little frustrating. Yet, weighed within the context of life itself, Adam, and our lives, are still a perfect 10.

(Oh.. and he loved his cake at school!)

18 Comments:

Blogger Kristina Chew said...

Estée, don't be so hard on yourself about "stupidly" giving him the gift. As well as we try to know our kids, we don't know a lot. Charlie (like Mom-NOS's Bud) sometimes does those 4/4/30am wake-ups, esp. if he knows something "special" is going to happen and then he's tired and anxious all day.

I try to see the "behavior," if I may use that word, as the thing to zero in on, and to just see it for what it is. And make some plans.

Hope he did all right with the 10 later in the day.

9:47 PM  
Blogger Melissa H said...

Conor wanted to take a can of asparagus to bed with him tonight.

We all know that if it wasn't the number 10 today, it would probably be something else another day. Like Christina said, don't be so hard on yourself.

Happy birthday sweet Adam!!

9:59 PM  
Blogger Anne said...

What a wonderful birthday morning! There's nothing wrong with having to struggle with leaving your brand new, beautiful number 10 home from school. Happy birthday to Adam!

10:11 PM  
Blogger Bronwyn G said...

Happy birthday Adam!

Hope you had/are having a great day!

10:33 PM  
Blogger Zilari said...

Happy Birthday to Adam!

Sometimes it’s just better to sit with all your mixed up feelings until the answer comes to you.

Indeed! This is independent thinking. :) Discussion is good, but individual processing is equally valuable and necessary in anyone's life. We all need to be able to form ideas about information uncluttered by exterior bias.

And sometimes when we form our own ideas, the original situation that prompted the idea-formation starts to look very different in retrospect. So then it's easier to discuss more accurately and objectively.

10:42 PM  
Blogger SquareGirl said...

Happy Birthday Adam!

"When Adam begins to protest, it’s usually when I’m too busy to be as patient and attentive as I would like."

I think this is an important thing that people forget to look at when there is a strong reaction (is that an appropriate alternative to "behavior"? I sincerely would like to know as I tend to think of "behavior" as a neutral word, smiling for example is a "behavior" in my mind) is what are the possible causes for the reaction. I often notice that attatchemts to specific things are stronger when there is a heightened sense of emotion, energy, anticipation, change in routine (no ones fault, just life). When days are a little more excited, sometimes children feel the need for a little more security via a stand-in security blanket and become a little more attatched to it than usual.

I realize you didn't want opinions and advice, and I apologize for providing my two cents. I have seen this kind of atatchement quite often and often notice a correlation to the amount of changes in the environment.

Have a wonderful birthday week with your sweet Adam and keep in mind he might be looking for some added "security" this week as we all do when things are just a little different than usual.

11:32 PM  
Anonymous Tera said...

Happy birthday, Adam! April is a lovely month to be born in.

Though now I want some chocolate cake.

11:47 PM  
Blogger Camille said...

Nobody's perfect. Estee, I just want to applaud you for thinking to give him a calendar. What a fantastic gift. You are a good mom.

There's a saying in psychotherapy... (ignore it at will much in psychology is bunk) that "it's all grist for the mill." You don't want to provoke an argument, but you had a reason to try to get the 10 from him, and he had a reason (a good one) to keep it. He learned to let go, you learned to pick your fights. Maybe you'd do the same thing next time, maybe you wouldn't.

No one is perfect, but you are a good mom.

I didn't see any behaviors there. I saw a mom and a little boy learning to get along on a busy morning.

12:34 AM  
Anonymous mike stanton said...

You are so right when you say

I thought how if I called someone to give me advice, perhaps they would treat Adam’s protest as a “behavior,” that if I mentioned the incident, he would be the targeted culprit and not the fact that I stupidly gave him a gift at a rushed breakfast right before school. The “behaviour” would be addressed with rigorous, unwarrented “procedures."

In school I always try and deal with the situation rather than the behaviour. Easier said than done, I know. It used to be a lot harder at home with my own autistic son than it is in a classroom with other people's autistic sons and sdaughters.

4:33 AM  
Anonymous Emily said...

Happy birthday to Adam!
My 2nd son will be 4 at the end of this month.
I know so well what you have just described. Most of the time when one of my chidren, autistic or not, is 'badly behaved' it is just their way of responding to a situation,usually caused by my poor planning or whatever. It bugs me too that people could judge my son especially. They would just see a naughty child and not one who is at all times making huge efforts to communicate and express himself in a difficult world.

5:18 AM  
Blogger Estee Klar-Wolfond said...

Thanks everyone...I will tell Adam how many people wished him a Happy Birthday. We are overwhelmed!! :)

7:06 AM  
Anonymous Bonnie Ventura said...

I hope that Adam had fun playing with the calendar when he got home and that he had a great birthday.

Does the store where you bought the calendar have any more of them? I'd suggest buying an extra calendar or two. That way, if Adam carries around the numbers and loses some of them, you can replace them easily.

7:35 AM  
Blogger Jannalou said...

The former client about whom I wrote this post used to have a therapist who would document every single "behaviour" on the ABC charts and then say that it needed to be tracked and a behaviour plan needed to be developed so that it could be dealt with effectively.

The problem with that?

The "behaviours" she was writing up were things like random screaming (which we all knew this girl liked to do for the reactions it got her), crying (sometimes this was for attention - the child is quite a little actress - and sometime it was for real... you can tell the difference if you know her well enough), laughing inappropriately (as we all should know by now, that often just happens with these kids), and so on and so forth. Most of what this girl was writing up were escape behaviours - this child was trying to get away from her - that nobody else on the team was seeing. Add to that the fact that a "behaviour" would be written up on its first appearance, and... well... oy.

The family will continue to stand behind their autistic daughter, who will be twelve this September. Her mother has discontinued the "home program" in favour of using tutors as necessary and employing community aides for things like art classes and swimming lessons, so that the only "programming" she is getting now is happening at school.

I have told her parents that, if they or her siblings are ever unable to continue caring for her, I will take her. That is how close we have become, over the years. She is the only client for whom I would offer such a thing.

12:10 PM  
Blogger Ian Parker said...

Just a thought on the behaviour. I usually pick my daughter up from school at lunchtime, and since the weather has been getting nicer I've been taking her to the park to go on the swings.

She loves the swings, and despite the fact that I clearly count down the time for her before we have to go, I invariably get a protest when it's time to leave. The thing is, I don't consider the protest an 'autistic' behavior to be managed (e.g. dealing with change, etc.), but rather the normal protest of a 2 year old having something taken away from her that she doesn't want to lose. My point is that while she is autistic, she is also in many ways just a normal child. Sometimes we can lose sight of that.

Happy Birthday Adam!

3:34 PM  
Anonymous kyra said...

happy birthday dear adam! four! such a big boy! we are sending our best wishes northbound from our tiny corner of the newly springing earth, for a beautiful passover seder tonight and for a wonderful party on saturday. you are a fantastic mom, estee!

4:12 PM  
Anonymous Anonymous said...

The mornings are such a rush for any child. You are a terrific Mom Estee. Don't be so hard on yourself.

Scorpio

7:52 PM  
Anonymous jparker said...

"Sometimes, it’s better to just be a temporarily confused parent -- feelings, guilt and all."
HA! By temporarily do you mean 0-25 years of age? Happy Holidays and glorious birthday celebrations to you and Adam.

6:09 PM  
Blogger Wendy said...

Happy belated birthday Adam! I hope it was a spectacular day!

6:35 PM  

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