Tuesday, April 5, 2016

Thoughts On Autism {re-purposed}

Originally posted April 2014

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:

  1. Less than half (44%) of children identified with ASD were evaluated for developmental concerns by the time they were 3 years old.
  2. Most children identified with ASD were not diagnosed until after age 4, even though children can be diagnosed as early as age 2.

PJ was diagnosed with Autism shortly after his second birthday. Pete and I had already utilized an evaluation with our state Early Intervention program, which allowed for PJ to have nearly six months of therapy under his belt by the time we received the official "Yup. It's Autism." I think about how lucky we were to be surrounded by supportive staff at our pediatrician office, who didn't say things like, "Well, he's a boy." or "It's not that he can't talk, he just won't." 

I don't think that the people who say things like that say them out of malice or ignorance. Not at all, and I am sure there are some amazing physicians out there who just aren't alarmist, and might not recommend action when a milestone has just been missed. PJ was hitting all of his milestones late- rolling, walking, teething- so when he still only had a few words at 15 months, we were concerned but not alarmed. It was pure instinct that led us to follow-up again when nothing had changed by 17 months, and I am very, very thankful that our physicians trusted that instinct and gave us the correct information, allowing us to follow through with our concerns. 

Autism is on the rise, and while it's certainly something to be concerned about, it shouldn't consume you. If someone was dumb enough to ask me for advice, I would say "Enjoy every minute with your baby. That baby is yours and wonderful and perfect. Don't obsess, but always trust your instincts, and try to work with people who will understand and respect those instincts, be that your spouse or pediatrician or pre-school teacher. You are, always, the people who knows your child best and the strongest and most qualified advocate for that child." 


We are thankful for every second of therapy PJ has had. Seeing PJ grow and learn and stretch and love has been all the reassure that we need. It is never too late to start therapy- not by a long shot. But it is never too early, either, and it's up to us as parents to decide which road to take.  

Every child develops at his or her own rate, and it is up to you to decide if that rate is the right one for your child. Watch carefully, listen to your heart, and in the meantime, love, love, love those babies. Emphasis on the latter. 



Through the door, what do I see? 
 Something is happening, is it for me? 
Is it for me? 
Toad The Wet Sprocket- Is It For Me

Friday, April 1, 2016

Autism Awareness Life

I was out for a walk with PJ last night, thinking about a million things while he rode on his scooter ahead of me. His blonde hair was sticking out of the top of his helmet as he scooted along. We are coming up into my favorite time of year, when there is enough light and warmth for a walk after dinner.



One thought was that is was March 31st, and that the next day would be the start of Autism Awareness Month. I watched PJ riding along and thought about how, at this time last year, he didn't have the motor skills to ride a scooter. Foot planted, using other leg to push, steering; it was all too hard for him to do. PJ's scooter skills still need some work, but he happily moved himself along as fast as his legs would go, straightening himself when he stumbled. Not only that, but this year, his new-found scooter skills were accompanied by his telling me "Mommy, I can ride my scooter! Mommy, I can DO it! I can do it by myself!"

That's new, too.

It's a little difficult to lend any attention to Autism Awareness Month because, of course, we are living Autism Awareness Life. The month simply gives a spotlight to voices who are making noise every day of the year. Parents who are advocating for their kids to be have the tools they need to learn, doctors telling scarred moms and dads that their child isn't simply "quirky" or "different" (something that is happening at an alarmingly increasing rate), and adults who have Autism wanting to make a living and live a life like their "typical" adult peers.

We walked and scooted through the neighborhood, PJ using his developing verbal skills to try and convince me we should go to the playground, and I basked in his voice. I don't always bask because OMG can you stop talking about the characters from Cars for a second? Just because the words have been hard fought doesn't mean that they aren't annoying sometimes! But with the air on our faces and the spring flowers blooming, I couldn't help but think of how much PJ had bloomed himself.

It's all hard work. I had to wait a long time to write PJ's first word ("Cake!" down in his baby work, and each word after that was a victory, earned by endless hours of Early Intervention, school, and other therapies. It was certainly time I would have spent simply playing with my child, but it pays off in dividends on an night in early spring, when he's motor skill-ing and talking and being his best self. The moments that are easy are so much sweeter, so much more valuable, so noticed and that is one thing I will be endlessly thankful for, the gifts of slowing down and taking things as they come. Would that mean as much if we were rushing through a typical life?

At any rate, we have this whole month to share and reflect and do what we can to tell our story, a story that we share with so many other families. And it's not just families directly affected by Autism who are walking this walk. Anyone can "Light It Up Blue," and make donations to amazing organizations like Autism NJ. You can also just ask me about PJ. You can learn a little bit about things like inclusion education and realize that it doesn't just apply to kids like PJ but is beneficial to all children. If PJ is losing his shit at the playground, don't look away. Awareness isn't as hard as it seems. It doesn't really need a spotlight. It just means you hold a little space in your heart for kiddos like PJ who need it.

"Shine a light, shine a light..."
    - Philadelphia Freedom, Elton John