Sunday, January 23, 2011

Chandler's 8th birthday, the toy store, and the worst toy ever...

Toys R Us is a like an alternate universe in a childhood dream. They have things I would have begged for as a child, given up all my piggy bank's insides for, and stared longly at while passing by hundreds of shelves of gorgeously dressed dolls with golden curls and velvet dresses, glistening red fire trucks with real sirens, puppies with soft fur that bark, and shiny boxes of colorful wonder everywhere. The lights, colors, and textures would have been overwhelming in an incredibly exciting way. This is not my sons experience, nor is it mine any longer. I am no longer transported back to my youth, now I am a shrewd critic, weeding through everything in despair and disgust, with just a sliver of desperate hope that I might find something he will "play" with.
I was mindlessly wandering the aisles for his birthday present, discarding this thing and that, maybe a book, maybe a puzzle, OH MY LORD!!! NOT this puzzle! They sell a puzzle I find appalling for any child, and it happens to be a hook and latch board. Now, for the naysayers that might read this, I get that it might be used for fine motor skills, but do I really want to help my children open hook and latches, and dead bolts?!! I think not. Shaking my head and staring in humorous disbelief, I was about to give up, and I rounded the corner. Aqua sand. Well......this gift is going to his dads...It was the "polar playground" and it has little penguins that go down a slide with a pump you push to make a real waterfall! Cool. Done deal. I made my purchase, and left this frustration center.
Fast forward to after dinner. Going out for ice cream instead of cake has become tradition for Chandler and I love to watch him enjoying a typical kid moment, trying to lick the drips from the cone. My sweet, perfect angel. Where have eight years gone? Is this little boy really the baby that wouldn't stop screaming, the toddler who carried only balls for toys around, and made me read goodnight moon 30 times a day? The preschooler that I was sure would never grasp potty training or say my name? The same little boy that had words that just sat on his lips without coming forth? Fighting tears, I watched him smile and offer the cone to his dad, to me, and use his napkin, and say "all done". I don't have enough blog room to detail all the progress he has made over eight years. He is growing up to be a very handsome boy, and he has this aura around him, that makes people notice him. He is sensitive, and sweet and knows when I am feeling sad or sick.  I hope people take the time to get to know my son, he is amazing with a kind heart, and a beautiful spirit.
Fast forward to play time with the polar playground....I called dad to see how it went, and he said it was a semi, short lived success. One of the penguins was missing, and he was quite certain Chandler made off with one to squirrel away in his hiding places. For that I am glad. So my gift was loved not for the cool waterfall, and colorful sand, but for the tiny black and white smiling penguin wearing sunglasses.....Perfect. I love you Chandler. I will never stop advocating for you, educating for you, and being proud of you no matter what. I am not wanting you living up to my dreams or expectations, but creating your own. Teach me, and we will show the world that what they think about autism is wrong. Happy Birthday to my amazing child!

Monday, January 17, 2011

Sticky wicket

A sticky wicket is a term used in the game of cricket. Basically if the pitch is altered by rain or moisture, it creates a spot where the ball bounces erratically or in an unpredictable way. The metaphorical use is to describe a difficult situation. I will now explain my SW story.

I like to think that I have a lot of fantastic people in my life that are angels, helping me out on my journey with autism. Some are hidden, and some are in plain sight.  I put a lot of faith and trust in the people that teach and work with my son. I haven't had a lot of problems with therapy or school because we all seem to be on the same page. Encouraging and giving a gentle push here and there, and we all celebrate when Chandler reaches a milestone, no matter the size. Last week was a scheduling nightmare. I returned to school, and the kids were on week two back from Christmas break, and the weather was snow, and more snow and cold. Everyone was just out of sorts.  I found myself on edge, snapping at the kids, my husband, the remote for not channeling the way I wanted because I'm entirely sure I pushed the right button in my rage. I was at least ten minutes late to every class I went to, but Friday finally came and I rushed out of the house after my shower with wet hair because I needed to go to Zumba. Ah Zumba. My 50 minutes of letting the music control my body and clear my mind. I can let the power of Salsa, Merengue, and Cumbia take all my stress and replace it with joy, clarity, and calm.
I left Zumba feeling like I had my brain back. I was centered and energized. I got to my monthly Autism support group just in time, and as usual, the room was inviting and buzzing with familiar voices. I poured a coffee with hazelnut cream and bit into a macadamia nut cookie (so much for the calorie burning). I heard my name and looked around. Another mom with a child in my sons class was calling me over. She looked serious when she asked if she could talk to me. Her concern was a story about our children's class and a para who had apparently been not taking my son outside, texting while caring for him, and basically letting him "do his own thing". The coffee tasted bitter in my mouth, and I must have looked more upset than I thought because she was apologizing and telling me she didn't know what to do, but she felt she had to tell me what she knew. My concentration now broken, and although I always love listening to the parents in group talk, my thoughts kept going back to Chandler and this para professional. Why wasn't he going outside with the other kids? Don't they have policies about texting? What was he learning or doing with her? Why was she robbing my baby of his education and his opportunities for growth? What kind of training does she even have? I felt betrayed. Heartbroken that my son comes home every day and I ask him "How was school baby?" and he can't tell me. He can't say "I didn't go outside today mom", or ask me why he wasn't doing things the other kids were doing. The worst thought popped into my head. Does she even talk to him? I held back hot tears until I was in my car, and they fell in streams. I trust you with my son! He is locked in his own body, and might be crying out to communicate with you, and you are texting, and acting like this isn't the worst thing you can do by not engaging my son. What makes this even tougher on the mind, is that I am not even supposed to know this information. I might never have known.
As of now I haven't met with the school, or the para, or even spoken with them over this long weekend. I am glad I have the time to consider what I will say. But my rose colored glasses about school have been shattered. My wonderful experience thus far has been tarnished, and I am a cricket ball bouncing unpredictably on a sticky wicket.