Saturday, February 23, 2013


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?
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”...

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:
  • he Loves  video games

  • he Hates chapstick
  •   he  Loves the show Annoying Orange
photo from Game Spray
  •     he  Likes to read
  • he likes to use his imagination
  • he loves stuffed animals
  • he loves to draw

Monday, February 11, 2013


WOW - It's been a while since my last blog entry. (Turns out my 4-yr-old's sensory issues are more time-consuming than my 6-yr-old's autism...GO FIGURE!)

Anyhooo...I just happened upon this AWESOME blog today, and thought I'd share. It's called Snagglebox, "a place for honest, practical and encouraging help from someone who knows there's a light at the end of the tunnel but still remembers how fricken' hard it can be to find it". LOVE IT!!! They have a webpage (www.snagglebox.com) and appear on Facebook (under "Snagglebox - Autism Parenting Support"). 

Their most recent post is entitled, "17 Things The Princess Bride Taught Me About Autism Parenting". Being the Princess Bride cult follower I am, I just had to check it out.

As blogger etiquette would have it, you must visit this link to read the whole list, but I took it upon myself to highlight a few of my favorite quotes and add some anecdotes of my own: 
"You rush a miracle man, you get rotten miracles
If there's one thing I've learned as a mother and teacher of kids with special needs, it's patience! I've never considered myself a patient person. Just ask my family or coworkers - I'm known for getting overly-excited about something (DIY projects, new lesson plan ideas, new exercise program), only to be "over it" two weeks later. However, when it comes to my kiddos (biological or otherwise), I have to be patient. There is no choice in the matter if our special little guys are going to succeed.

“Patience is waiting. Not passively waiting. That is laziness. 
But to keep going when the going is hard and slow - that is patience.”  
- author unknown (from thinkexist.com)
"Don’t believe the hype"
OK, this one can get me in a lot of trouble, but here it goes... Whether you're on the gluten-free train, the heavy-metal detox wagon, or drinking the Jenny McCarthy Kool-Aid, stay informed. Don't rely on one organization or public figure to persuade you into what is right for your child. You know what they say, "if you've met one child with autism...you've met one child with autism"! Each case is unique. Parents can become desperate when looking for a way to communicate with a nonverbal child or stop an aggressive child from hurting himself. Unfortunately, there are people who will prey upon that desperation. Be Smart.

"There’s not a lot of money in revenge"
There will always be that teacher that doesn't agree with the diagnosis, that family member that thinks your kid is just weird, or that stranger that thinks your kid just needs a "good old-fashioned butt whoopin'". Forget the haters.
And finally...
"Optimism can get you through the fire swamp." 
Sometimes all you can do is laugh. If your glass is not half-full, you're gonna be one thirsty bitch.