Friday, March 1, 2013

What Sky Wants You to Know About ASD

As you probably gathered from my meltdown post a couple of days ago (link), Sky's been going through another regression. I always know it's bad when his teacher, typically the model of patience and tact, sends an e-mail with the subject head "Sky's Week."

Especially when it's only Wednesday.

I'll spare you the gory details, but suffice it to say he's been out of sorts and disruptive, and I've been spending a lot of time this week writing e-mails and meeting with teachers and therapists to try to figure out what's up.

Often, Sky acts worse when he 's worried that people don't understand how hard he is trying, so in an attempt to help alleviate some anxiety, I encouraged him to write a story to share with his teacher and classmates.  I gave him a couple of prompts, but he created most (95%) of this story on his own. He hopes it will help people understand what it's like to have a "special brain" like he does. I hope it's just the beginning of him learning to advocate for himself and for others with Autism Spectrum Disorder.

"I have autism. It's very hard sometimes for me to control myself. It feels like I'm gonna to explode!!"

"I do things that I'm not supposed to do. For example, I kick my shoes off at school at the wrong time (Editor's note: Is there ever really a right time to kick one's shoes off at school?). I take my shoe off when I sit in class."

"I get mad at my sister sometimes because she sings, whines, yells, or cries. I get so mad that I hit her sometimes."

"It's very hard to concentrate on stuff like 'Rocketship Math' (Editor's note: Catchy new name, but same old math facts) at school. It's hard to listen, too. Like when I am listening to someone else, I start getting distracted."

"I like to hear crashing sounds and see pieces break, so Angry Birds is perfect!" (Editor's note: It's true. It's as if the game was made especially for him--killer for the iPhone battery, though).

"Here's something I wish everybody could understand: that it is the hardest thing to control myself. It takes up all my energy." 

"So, I told you the story about how I feel sometimes, and my baby brother, too, has a special brain. But, that's another story. THE END!"

This last one kind of cracks me up. Pink P is convinced that Stow has asthma and food allergies like she does, and Sky thinks Stow has autism like him. As for me, I'm hoping he finds different ways to commune with his brother and sister. Oh, and I love, love, love Stow's pants in this picture.

For other illustrations by Sky, click here and here.


Jewel said...

Great way to describe it. Makes us not special folk understand a bit better! Thank you Sky!

Mom on the Edge said...

Thanks! I'll tell him. He was excited that people were going to read his story today!

FMBMC said...

Tell Sky I loved his story! Also, don't tell him this part, but the whiplash effect in the picture where he's pushing Pink P is pretty funny.

Unknown said...

What a very concise and truthful way to explain something that is very hard for those who have never experienced it to understand! He is a wonderful teacher!

Mom on the Edge said...

I thought the same exact thing about that picture. Very realistic. :)

Princess Morag said...

My son just discovered Angry birds this weekend. We had serious meltdowns when we tried to get him off the computer!

Anonymous said...

I love it! Great idea to have him do this. The part about liking to hear crashing noises and pieces break totally reminded me of some of the kids I taught back when I was an aide in ASD class. One of my favorite students always spoke like he was describing a cartoon - with all kids of sound effects and vivid descriptions of things exploding or breaking.


Mom on the Edge said...

You just described Sky to a "T."

Mama D said...

My spectrum-like child often tells me how hard it is for him to behave appropriately. He isn't breaks my heart. It's great that Sky has a forum in which to vent that also has educational value for his peers!

Chocobi said...

"I get mad at my sister sometimes because she sings, whines, yells, or cries. I get so mad that I hit her sometimes."
I'm so sorry for Pink P! But I'm afraid I really feel where Sky is coming from in this. I'm an adult woman with severe sensory processing issues. In my mind, I know it's unreasonable for me to react with fury at the producer of the painful "assault" on my ears (my husband very sweetly vacuuming for me, or a friend's adorable three year old daughter shrieking with delight), but it's such a piercing, stabbing pain, that noise that's being made, it leaves me feeling like I've been attacked. And that "assaulted" feeling and the memory of the pain stays with me for days, weeks, sometimes even years. I wince whenever I remember a time 7 years ago when my mom loudly scraped metal against metal, for example! I don't know what the answer is, even for myself. Sound-blocking headphones, maybe? My daughter, who suffers from sensory issues, too, showed a LOT of improvement after doing an extended course of therapeautic listening/modulated music on CDs. She used to be constantly covering her ears and crying, but she doesn't do it at all anymore.

Mom on the Edge said...

This comment helps a lot. Thanks! It's hard for me to remember how differently he senses things. We have the therapeutic listening CDs but haven't been using them much lately (because he says they don't help). After reading this, I decided to try them again. What course worked best for you with those?

Chocobi said...

I'm so glad! I wasn't sure if I should offer my two cents or not. :-)
The sensory processing thing, for me, feels like the whole world is happily and cheerfully scraping their fingernails down a giant chalkboard, and then looking at me like, "What's your problem? Relax! Don't be so uptight."
Our OT used the Vital Sounds "modified" CDs for Therapeutic Listening. ( They apparently aren't available for online purchase. They have to be administered by a trained therapist, the website says. (We NEVER could have afforded to buy them on our own, anyway!) Having our daughter listen for 30+ minutes a day, twice a day, with bulky headphones, was a sensory nigtmare in and of itself, but we pulled through, and have seen a HUGE change in her. We followed the program to the letter, and made sure the volume was up loud enough so she could catch all the different frequency modulations. The Sony CD Walkman w/ Car Accessories, D-EJ017CK ($40 at Walmart), worked great, because it had the "shuffle" play feature, and we got the professional-grade headphones through the OT from Vital Sounds. We rigged up a little fanny pack for her to wear the CD player in so that she could move around freely, and we put a knit cap over the headphones so they wouldn't slide or fall off.
I tried using the CDs myself, but they actually seemed to make my issues worse. The OT said that can happen with adults--that several courses might be necessary, and it might get worse before it gets better. I'll have to try the course again for myself!
Hearing the TV hum from two rooms away... LOL! I sooooooooooo get that! (Me: What's that horrible noise? Everybody else: What noise?) And I soooooooo get him wanting to take off his shoes in school! He explains it all so well. Very articulate and expressive!