I have always had open discussions with my children about the
differences in our world. We’ve always discussed things we struggle with, as
well as things that make us awesome. I make mistakes publicly and process anger
verbally so my children understand these things are OKAY.
As a veteran EC teacher, my children have had the
opportunity to interact with my students of varying abilities - from nonverbal
& wheelchair-assisted to having mild learning disabilities. However, most of
my classes have been self-contained settings for students with autism. The
advantage for my son Tanner is that he is aware of autism and recognizes my students
as having autism. The DISadvantage for Tanner is that he is aware of autism and recognizes my students as having autism.
You see, Tanner has associated autism with children that are
non-verbal, flap wildly, make strange noises, and/or do inappropriate things (despite
my best efforts to point out otherwise). In fact, at a recent “Autism
Fundraiser”, he asked why we were raising money for “kids who can’t talk”. Again,
I explained the giant spectrum of autism and all the cool things about it.
Obviously, Tanner is not yet aware of his diagnosis. It worries me that he doesn't have a broader understanding of what autism is, because he will one day learn he is on the spectrum. Having said that, we have
not found the right time to discuss it with him, nor have we felt it necessary
at this age. He knows he is different, but aren’t we all?
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| 3993 Cute Photos |
Unfortunately, there comes a time in every EC parent’s life
when they are faced with the inevitable, dreaded “talk”. I now find myself editing a former draft for my blog from how I would tell my son about his autism to how I DID tell him. Luckily, our story of
how we told Tanner was not much of a “talk” at all, but the
answer to a 6-yr-old’s burning question.
It went down TODAY like this:
Tanner has recently begun to discuss, in great detail, the differences
he has and the difficulties he’s experienced. He can describe in glaring
clarity his movements, obsessions, and uncontrollable urges which make him him. Tanner’s main issues at school involve
high levels of stimulation (he has always
violently stomped his feet in rapid patterns on the floor, rocked
forward/backward, and stuck his hands between his legs to avoid flapping his
hands too much). Luckily, he has an understanding teacher who allows him to
be himself in these scenarios.
Tanner also HAS to say whatever pops into his mind, regardless
of the appropriateness of the setting or topic. In fact, when asked to be
quiet, he will continue to see his conversation through to completion, despite
the consequences. This is a common
autistic social faux pas, but one that cannot be ignored, as it has begun to
impede his learning and that of his classmates. And, while Tanner’s teacher has
the patience of Job, there has to be some consequence and understanding of
the rules, especially when it involves interrupting teachers or blurting out during
tests.
Tanner has been feeling down on himself lately for “getting in trouble for
flopping and being wiggly”. He has recently made comments like, “I wish I would
die” or “I just want to be a normal kid”...
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| www.markramseymedia.com |
We will fast-forward through the requested classroom observations
and OT screeners and move on to the part where I felt an obvious tug in my
heart to not only tell Tanner he wasn’t weird or bad, but to offer an explanation.
The past few years, I’ve sought “professional
advice” to prepare for this moment. The burning question for all EC parents is “When?”
"When do I tell my child he/she is different?" I know, I know, we are all different...but there will be a time when a child with special needs realizes it's something more... They are different different.
I asked several friends, teachers, and therapists their
opinion, and while hesitant to answer, most felt he may be too young to truly understand.
At a conference, I personally asked Debbie Meringolo and
Nancy Tarshis, of “Social Thinking” notoriety, the same question. They went into a
detailed discussion about how Tanner never needs to know a “label”; he only
needs to understand and accept that all people are different (grrr, there's that word again).
A school psychologist, while explaining it is a “parental judgment
call”, suspected that a “talk” at this age might increase his chances of
depression...
Ironically, whenever I turned to the autism community (the real experts, after all), the consensus seemed to be that discussion should occur as soon as
your child is ready...
I recently read an article in “The Spectrum” by Jennifer
Cook O’Toole, an adult with Asperger’s (who also has an Aspie husband and three
Aspie kids) who urges parents to tell their children as soon as possible,
because “your kiddo already knows she is different than many other people. Give
the difference a name that is free of shame, and you’ve given a young person
answers, relief, tools, and hope.” This
made me feel sooo much better about the prospect of having to reveal to Tanner at
an early age that he has a diagnosis.
Yesterday afternoon, as we exited my classroom after school
and started down the hall, Tanner made a profound comment out of nowhere. “Mommy,
when I grow up, I want to find out why I am so hyper and wiggly. I want to
become a scientist and find a way to check everybody to make sure they don’t
have what I have.” WOW. Perhaps the time is drawing near, I thought to myself.
Today, we were obsessing over a “Plants vs. Zombies” plush toy
he had been saving for. After checking our chore charts and adding our money, Tanner insisted I immediately order the toy. After an additional 30 minutes of making sure we had the
exact plush he was saving for, I urged him to “take a break” so I could place
the order (I was clearly the one who needed a break!).
He voluntarily explained
that “I know other kids wouldn’t care about watching you pay for it. But, I
think the whole thing is interesting…Ya know how I’m so hyper and wiggly? I
also have this thing where I have to see someone do something they promised.
Like, when you promised to order that zombie, I have to see you do the whole
thing. My brain has to watch you do it even though you promised you would (long
pause)…I wish I knew why I was so different.”
Uh-oh. There it was.
I always envisioned an evening sit-down
involving my husband, out of earshot from my youngest son - sort of like the
Parenthood episode where the Bravermans sit Max down to a teary-eyed
explanation of his recent Aspergers diagnosis.
(While I could not find the actual clip of the sit-down with Max {without paying for it},
I did find the Bravermans' follow-up with the child psychologist:)
...Scary stuff.
Luckily, it did not go down like that. No plan. No script. My son was looking for answers. And so it began:
“Tanner, do you remember yesterday when you
said you wish you could find out why you were hyper and wiggly? Why did you say
that?”
“Because I want to know what I have so I can stop it and
just be a normal kid.”
“You are a normal
kid, Tanner. You are a smart, normal kid. You just do some things differently...If Mommy knew why you do some things different, would you
want to know?...(head shakes yes)...I don’t
want you to be sad. It’s just a name. Just like brother has SPD or daddy has
OCD or mommy has ADD?"
(Be it right or wrong, I have tried to “label” things to prepare Tanner for any "labels" he might have, and to make him realize that a label is not a “sentence”…God, I hope that
wasn’t a mistake.)
“I get it, mommy. It’s
just a name. It doesn’t mean I’m bad or anything.”
“Right. It’s just a
way to help other people understand why we do certain things, and for doctors
and OTs to know how to help us when we need it.”
“Do you know what I
have Mommy?” (wide-eyed and excited)
“Yes…Do you remember this book about the kid Danny that has
Asperger’s?”
(picking up the book “What it is to be Me!” off the shelf)
“Yeeeah…so I am an Asperger kid?”
“Mmm Hmm. Here is a website we can visit to learn more about
Danny.”
(we visited www.aspergerkid.com)
“I want a website so I can tell people all about me and they
can understand!!!”
“Actually, Tanner, you kinda do. Do you want to see it?”
(head shakes yes)
(I take him to my “Octagons and Chicken Fries” blog, a place
I usually only access during his sleeping hours)
“Why is that picture of me on here?”
“Because I love you and I want people to see you’re the
reason I like to write about this stuff. And the reason there is an autism
ribbon beside your picture, is because Aspergers is a kind of autism.”
“So, if I’m Asperger, I’m autism?”
“Yes. There are many kinds of autism, and you are a very,
very smart kind.”
“Let’s write something on your blog right now!”
“Do you want to talk about how you feel being an Asperger
kid?”
“Nah…let’s just start with the basics.”
________________________________________________________________________________
Here is what Tanner wrote by himself, and the pictures he
chose to go along with them:
Tanner’s site. Helped with mommy.
Tanner is a really cool kid. Here are some things about him:
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| www.fatpebble.com |
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| www.burtsbees.com |
-
he Loves the
show Annoying Orange
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| photo from Game Spray |
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| www.amazon.com |
- he likes to use his imagination
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| www.kidzartblog.com |
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| www.amazon.com | | | |
