Thursday, March 31, 2011

I'm Aware

April 2nd is World Autism Awareness Day this year. If you see buildings with blue lights shining on them April 1st and 2nd you'll know why.

There weren't any "Light It Up Blue" (click for events near you!) backgrounds for our blog, but I wanted to participate anyway. I thought I'd just briefly share some of the times that I have been especially aware of autism.

One tiny little moment shines through as a moment in which I was truly aware of autism. We had been visiting Saba and Savta (Hebrew grandma and grandpa) and were on our way home. Avi truly loves them and really enjoyed being cuddled, fed and spoiled. As we walked past the windows of the other apartments in their building I saw an older man open the door and a boy who must have been his grandson come rushing in with all the force of childhood excitement. He ran into his grandpa's open arms and squeezed as tightly as he could. I looked down on the verge of tears realizing that while Avi loves us his expressions of love may never be as exuberant and may never be as obvious. My heart hurt to think of what he and his grandparents were missing. Even thinking about these two strangers locked in an embrace they probably don't even remember is enough to bring me to tears.

I was aware of autism on a hotel shuttle to Disneyland when a mother, angry with her child for being excited and wiggly turned and snarled, "What are you, autistic?!" I was aware then how many moments Avi may be forced to feel different and even bad.

I am aware of autism every time a bagger asks Avi how old he is and looks at me questioningly and then with pity when he pays them no attention whatsoever.

I am aware of autism every time I look at my beautiful son sleeping. When I wonder how, just by closing his eyes, he is so changed. His hands finally calm. He no longer feels the need to flap or finger flick. His silent mouth is silent still, but now it is expected. His closed eyes hide their secret inability to look into anothers. His feet that never stop moving are relaxed. An observer who didn't know him would never guess how he struggles each day.

Finally, I am aware of autism every time I think about the future. Every time I wonder when Avi will be, how he will get along without me and whether our efforts today will make a meaningful difference for him tomorrow. I am aware of autism when I answer the question, "How is he doing?" with a smile instead of with tears.

Thank all of you for being aware with me.

Monday, March 28, 2011


Avi woke up around 2:00 this morning...again. He sometimes has trouble sleeping. I was already awake and reading having sleeping problems of my own. Normally when he wakes up so early I'm trying every strategy I can think of to get him, and me, back to sleep. This morning though I was in no hurry to get back to bed. He just cuddled up between me and my book and relaxed. Finally I could see he was getting tired again so I put the book down and turned off the light. I spent the next half hour or so watching him slowly drift off to sleep.

It reminded me of when I was younger. My family had a big white van. That van was the scene of many family famous stories. There were trips to grandma's where the Christmas tree would be hidden behind a mountain of gifts and the return trip would include bags and bags of new toys, books, clothes and other Christmas spoils. There was the summer trip to California. And who could forget the last van story, Great Van Fire of 1990. But my favorite of all the van stories was my scam. Sometimes when we would be out at night I would pretend to fall asleep. Then my dad would come, pick me up and take me to my bed. I loved being carried to my bed. This morning I got to be on the other side. I got to pick up a little boy (who wasn't pretending) and carry him to his bed. I loved it just as much as I loved being carried.

I just hope Avi doesn't tell Itai about it or I'll never get any sleep again!

Sunday, March 20, 2011

The Luck of the Irish

We're Irish...kinda. But everyone is Irish once a year right? This year Avi's Irish luck provided him with a lucky change.

A few months ago Avi's occupational therapist (OT) told Debbie that she didn't think she (the OT) was helping Avi and she didn't think she should see him anymore. She gave a referral and wished us luck. We were pretty bugged. We have been ditched by therapists before who have said the same thing. We just wanted someone to say, I'm not sure I'm helping him, but I'm not giving up. Since that didn't happen we took her referral and met with the new OT. She was kind and was careful not to push Avi too hard too quickly. She wanted to build a good rapport with him. She also wanted to know where he was and what we wanted him to get out of the sessions. Once she got a good feel for his situation she was off and running. She decided to use tokens so Avi would know how many tasks he has to complete, i.e. puzzle pieces he had to place, things he had to count, etc) he wasn't exactly excited about it at first.

She said she really wanted to find out what would get him most regulated because she believed that he could do any of the tasks once his sensory needs were met. She tried a few different things. Swings, ball pits, slides whatever she could think of. Her efforts were met with little success at first. Finally she pulled out the layered Lycra swing. At first he was going wild, loving the feeling of being lightly squeezed in it. Then she changed his position in the swing. The change was immediate. He calmed down completely. She started swinging him in figure eights. The calm that came over him was powerful. Eventually she told him it was time to work. He sat in his desk and put the elephant toys together, tail to trunk, one at a time without any verbal or physical prompts. He even handed her the tokens. His OT said this is why helping him learn to regulate his sensory needs himself is so important. We couldn't be happier that this OT did not give up even though it wasn't easy!

So Avi is now on a "sensory diet." He has to lift heavy things, swing, get rolled, get squished, blow through a straw, or doing deep pressure exercises. So far it has really helped him. He's able to sit longer and understand our instructions better.

Monday, March 7, 2011

She's Back

Debbie is finally home, but she forgot to bring the warm weather she enjoyed with her. It is snowing...again. I've been so sick since she got home that we really haven't seen much of each other or done much of anything.

I'm feeling a little better everyday and hoping we'll get to do some fun things soon.

The last thing I did before Debbie got home (other than get food poisoning!) was rush my photography assignment. I really struggle with this class. Composition seems to come naturally to most of the other students while I'm making things up as I go along. Anyway, here's what I turned in. I was surprised that me teacher more or less liked my submissions.

Flash fill photo (with the sun behind and the flash bringing back some detail and color)Long Exposure (15 sec)- You can see the little airplane/helicopter streak in the sky...or maybe a UFO!
"Creative Light" Assignment. I wanted to make the trike a magical toy.
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