Monday, April 29, 2013


Those are the perfect imprints of my child's teeth on his hand. 
This was the result of him feeling frustrated about not knowing what was next in the morning routine.

This is why I will not be quiet and smile and say that autism is a blessing.

This is why I say that I would be first in line if they ever found a way to rid my child of his autism.

He is not his autism.  

Autism makes him hurt himself.

No mother should have to see their child in this sort of pain.

No child should feel so lost and out of control and unable to communicate that they succumb to this.

As of tomorrow, Autism Awareness Month is over.  

But for families like ours it's just on repeat every month of the year.

Saturday, April 27, 2013

Gluten Strikes Again

Things have been really good.  So good that Brian has attended things like Colin's gig and a hockey game with very little meltdown behavior.

In fact he danced the night away at Colin's gig.

And his brother and cousin used the noise-cancelling headphones way more than he needed to at the hockey game.

He actually stayed in his seat for the entirety of the hockey game, rather than taking me on tours of every hallway and room in the arena as he has done in past years.

Things have been going really good.

So when they go bad, you notice.

It started when we had to leave the house around 11 this morning.  I had told him several times we were leaving.  However, he started screaming the second I handed him clothes to put on.

But it got really bad when he had to turn off the television.  He's been really into watching his shows by streaming them through the PS3.  However, he hasn't figured out how to turn off the PS3 properly.  When I tried to stop his routine to show him he threw himself on the floor and screamed like I was hurting him.  Then when I insisted the controller be plugged in so it could charge he ran across the room and threw himself into the wall and then proceeded to bite his wrists.

I got him out the door eventually, still in tears.

We got to our destination, an outdoor park where I was meeting friends to discuss a fundraiser we are doing for our dear friend who just found out she has cancer AGAIN (side note: she needs all the support she can, she's only 32 and this is her second round, no insurance as she's a self-employed massage therapist- you can help here!).  I had brought their kites for them to use and that seemed to calm him and I even got a few smiles.

Sadly, it was short-lived.  He started to drink off a friend's sippy cup when I inquired if it was okay my friend said, "Of course, it's only apple juice."  I ran across the park to take it away.  No apples for my boy.  That set off another meltdown.  Not a self-injurious one, thankfully.  But one that required needing to be held in my arms until the tears subsided.

We left the meeting earlier than planned as he sequestered himself to the backseat of my car soon after the apple juice incident.  The rest of the afternoon was met with tears as I tried to work in the yard and he wanted nothing more than to run, scream, and flap in the middle of the street.  Tears, throwing himself against surfaces, and just general sadness. When he wasn't sad he would go immediately to a manic stage where he would scream, laugh, jump on me, and flap his hands against my cheeks.

I finally gave in and succumbed to allowing him to zone out to television for the rest of the afternoon, where he watched the same fifteen seconds of three different shows over and over again.

At 6:00 he was passed out.  I can't remember the last time he fell asleep before 8.

The kicker to this whole story is this.....

This morning when Corbin went to grab the only leftover piece of his pizza from the night before he realized it was missing.  After checking with Colin that he wasn't the culprit, we all realized that Brian had eaten an entire slice of glutenfied pizza.  You can all say what you wanna say about diet therapy.  But today was the worst day we have had in months and the only day he had gluten.

Sunday, April 21, 2013

Touching Strangers

It was surprisingly quiet in the grocery store for a Sunday afternoon.  Generally I despise and loathe those big Sunday grocery trips so I was pleasantly surprised at the peacefulness.

I was able to let Brian's invisible tether grow a little and I felt my own grip on the handle of the cart loosen.

Brian was dancing around the aisles as he usually does, trying to tap shelves or make sure his toes touch each square on the floor.

At one point an older woman giggled as they did a dance together as she tried to reach the pepperoni behind him.

Yes, she giggled.  I laughed back and said, "He loves to dance in the grocery store".  She smiled at him and went along her way.

A minute later he jumped across the aisle and placed his hands on a two-year-old's cheeks while giving her his biggest smile.

I ran across the aisle, hoping she wouldn't burst out in tears from this big boy that appeared out of nowhere and was touching her.

Her grandparents looked quizzically at me as I loudly asked him, "Did you want to say hi to the little girl?"

I held him there, yet keeping a safe distance so he wouldn't squeeze her cheeks again, and said, "You can say hi to her."  He jumped, flapped, and said "Hi baby!!".

I looked up at the grandparents and quickly said, "I'm so sorry.  He has autism and doesn't understand the social graces that come easily to the rest of us.  And he just loves 'babies'."

At this point I was making it into a big scene, using my loud teacher-voice.  Several people had turned and watched the scene.

But everyone smiled.  The grandparents just nodded and urged their granddaughter to say "Hi" back to him (she still looked like she was shell-shocked, hopefully that wore off).  And we went off, with him smiling and repeating "baby, baby, baby" over and over again.

The situation made me smile.  No, he shouldn't be going around squeezing toddler's cheeks but everyone was so kind and accepting that it gave me hope.

Don't worry, I did give him the job of pushing the cart to avoid any more instances of touching strangers.

Thursday, April 18, 2013

Happy Reunion

When my boy comes home after being gone for an extended period of time there is no doubting his excitement.

It had been five days.

When he spotted me in the parking lot he started giggling and emitting those happy squeals.

He started to skip/jump/race to me with his hands and fingers flapping so fast they were a blur.

He jumped into my arms where he just smiled at me.  A smile so bright it's seared in my memory forever.

Screw those people who think people with autism are emotionless.  In fact I often find it the opposite.  He can't hide what he's feeling whether he wanted to or not.

Obviously he is able to show many emotions ;)

Saturday, April 6, 2013

Making A Difference: One Second-Grader at a Time

Yesterday, Corbin and I took on the role as educators as we did a presentation on autism for a room of 15 second graders.

I've been meaning to do this all year but as always time flies by.  Days are filled with work, sports teams, appointments, therapies.  There's never enough time.

Finally, I was motivated.  I was motivated by Autism Awareness Month.  I was motivated by the eye rolls I saw peers do when he flapped his hands.  I was motivated by a teacher overhearing someone saying that Brian didn't know anything.  I was motivated by the stares he gets when he makes a vocal outburst.

The presentation had four main focuses.

One: What the heck is autism?

Two: Taking a Walk in Brian's Shoes.

Three: Despite all the Difficulties and Differences, Brian is Just Like You!

Four: How to be a Good Friend to Someone with Autism.

I was shocked to see only three hands out of the 15 go up when I asked, "Who here has heard the word autism?"

I really felt like I have not been doing my job.  How are there a dozen kids in Brian's class that hadn't even heard the word "Autism"?  I'm not one of those parents that are shy of speaking of the diagnosis.  I have educated my fair share of parents and children at playgrounds, the children's museum, and the zoo.  Why have I neglected to do so at the place he spends the majority of his time at?

However, guilt aside (the never-ending guilt of the autism parent is a post all in it's own), the presentation as a whole went extremely well.  The kids were amazed at how senses could be processed differently.  We did some fun stuff with fire sirens and imagining that all the noises in our environment were that loud for us.  We had to try to read words in a jumbled, messed up page.  We imagined what it would be like to have to use the bathroom but not being able to ask to leave the room.

The kids were very focused and into the presentation.  They shared a lot of stories with me of things Brian has done and things they have done for Brian.  I left their room feeling like they were able to understand Brian a bit more.

I ended up shadowing Brian for the remainder of the day and when we went back to his regular ed classroom I was blown away with his classmates making an effort to come over to talk to him.  I listened as one child said something, paused, and then asked again more slowly and clearly- a point I had made in our presentation.  I watched another give him a high five out of nowhere.

Children are kind at their root and it's our job to educate them so they continue to be kind to those that are different.  If my son's peers don't even know why he can't talk, there isn't much hope for them understanding and accepting him.  So yesterday, I like to think, that Corbin and I made a difference.