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Full of broken thoughts I cannot repair...

{stream of consciousness}

Autism can rear it's head at the most inconvenient times, none so much as at a family gathering to celebrate the birthday of my niece.

Newly 11 and lovely as can be, Riley is one of the best kids I have ever met. PJ adores her. We arrived at the party with a bag filled with UnderArmor and birthday wishes for this beautiful girl.

The kids (all 9 cousins, ages 1-13) played, presents were opened, and soon enough dinner was ready to be served. PJ might have been fine with dinner had he not spied the cupcakes, but once they were in his vision it was all he wanted. Lasagna and sausage, usually a favorite, were rejected as he repeatedly asked for a cupcake. His request became more and more urgent and a few minutes later, he was in Complete System Failure, punching my arms and pulling my hair while he sobbed and gasped for air. I walked him out of the dining room to the hall, trying to contain his flailing limbs and calm with with deep, firm hugs.

PJ's face was filled with sadness. I can never pinpoint his exact emotions, but he looked exhausted and frustrated. If a limb came free from my arms, he used it to pull my hair or hit. We danced the dance for nearly twenty minutes before he finally calmed down. We made a deal: Walk like a big boy into the dining room, and ask Aunt Shelly nicely for a PB & J. If he did that and ate it, he could have a cupcake. With a wavery voice, still tearful and congested, he did just that. The rest of the evening continued without indecent. He inhaled his sandwich, he sang Happy Birthday with glee, and helped his beloved cousin blow out her candles. I downed a beer, chatted with family, and tried to fix the piece of me that breaks every time my baby loses control.

It might sound strange to say but, most of the time, Autism isn't even on my radar. Of course we deal with school and therapies and such, but most of the time I am just drinking in my son. I forget that our reality is sometimes much different from other families until PJ has a meltdown in a different setting. Then the reality train comes screeching into the station. Watching a child struggle is hard. Watching the child that you love more than anything that has ever been or will be is torture. His father and I do everything we can to try to settle his uneasy little body but, sometimes, it just doesn't seem like enough.

It was a tough day. The tough ones can sometimes act as smokescreens, making me forget that so much of our time is good and fun and easy and bright. Today PJ went to school with a smile. He played in the snow with his Daddy and ate every bite of chicken on his plate. He ate ice cream we made from snow and watched cat videos on YouTube, laughing so hard that no sound came from his mouth. He asked for "fast kisses" from Mommy and Daddy- kisses to be delivered in rapid-fire succession on his cheeks from both of us simultaneously. This version is my son, just as the angry, unsettled version from last night is my son, and I love them both to the moon and back.




Comments

Jenn said…
I love this and really needed to read it today!
What a beautiful post... you clearly are such a wonderful mother. Days like that can be hard.
Nadine Renee said…
I totally understand. Thanks for sharing!
Shell said…
I so get this. Beautifully written.

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{...stream of consciousness}

Today is April 2nd, World Autism Awareness Day, and it is Autism Awareness Month.

The month begins on the heels of news from the Centers for Disease Control and Prevention that Autism is on the rise. 1 in 68 children in the areas followed by the CDC are identified as having an Autism Spectrum Disorder, up from 1 in 88 just a few years ago. In New Jersey, the numbers are far higher then the national average at 1 in 45. 

You can view a summary of the latest CDC report here, but there are two points of the report that stood out to me:
Less than half (44%) of children identified with ASD were evaluated for developmental concerns by the time they were 3 years old.Most children identified with ASD were not diagnosed until after age 4, even though children can be diagnosed as early as age 2.Content source: National Center on Birth Defects and Developmental Disabilities
PJ was diagnosed with Autism shortly after his second birthday. Pete and I had already utilized an e…