Today is World Autism Awareness Day. Some people want to call it Autism Acceptance Day. I will take either/both. If awareness and/or acceptance can be spread, I am on board.

First, some awareness, with a quick overview from the CDC with info you may know:

• 1 in 68 children (1 in 42 boys) has been identified on the spectrum.
• There is often nothing about how people with Autism Spectrum Disorder (ASD) look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people.
• The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged.

Now, here is the Fitz Fam overview, with some awareness about how Sam’s doing specifically:

• Sam is making great progress in Kindergarten. His school is a wonderful fit for him. His teachers are making necessary accommodations so that he can learn. He is reading at nearly a 1st grade level, he is mostly keeping up in math and is integrated with a “regular” Kindergarten class about half of the time. {Endlessly grateful for all of this.}
• We continue with speech and occupational therapies outside of school. We believe these are helping him… slow and steady.
• As of Christmas (he was 6 years, 3 months), his receptive language (what he understands) was at a level typical of someone that is 4 years, 9 months. His expressive language (what he can express to us) was at an age equivalency of 4 years, 2 months. With these increased language skills, the screaming Sam would do in the past has gone down substantially, and he can now identify others’ feelings. (Nothing quite disarms an angry parent like a kid pointing at your face saying- Mom is CROSS!)

This is all great news — we are moving in the right direction.

But to keep the picture nice and clear, many challenges are still with us. Sam will still rarely respond to a question (unless you’ve got his undivided attention), conversation is almost non-existent, and there are many quirky (and sometimes disruptive) actions and reactions that make people look twice, misunderstand, and cause us to try to stay one step ahead on everything. There’s still some screaming, of course, and socially… things are just rough.

C’est la vie.

Acceptance?

We’re definitely working towards it.

As we see Sam and his personality and specific little quirks more clearly come out, we are starting to form a NEW vision. For him and for our family.

(A quick aside for those who have never spent time with actual kids.) Before you’re a parent, you have this grand vision of PARENTING. You see some version of: flying a kite at the park… followed by a picnic… followed by sweetly holding hands as you walk home discussing something significant. You will patiently teach your child everything they will need to know.

Sooooo… Captain Obvious: it’s not like that. At all. In reality it’s 0.005% flying a kite and the-rest% yelling at your kids as they fight about who got more goldfish crackers at the picnic. Then, you leave the park because everyone is melting down. The walk home takes 10x longer than it should and you’re just trying to keep them from running out into traffic at this point. I could keep going. This is honestly tame because I’m always afraid I’ll scare people away from procreating.

And that was a really long aside. 

What I’m trying to say is: You have a vision. Your vision is wrong. With Sam, our first born, only boy, the vision was way wrong.

So, at first, we’re desperate to fix it, fix it, fixxxxx iiiiitt. Anything to make him “typical” and fit the grand vision.

And now… slowly… a new vision is starting to appear. Yes, I’m still nervous about his future, but I’m also hopeful… and curiosity is building…

Now I’m understanding that the world needs all kinds of brains. And Sam’s brain is pretty interesting to me… I am curious about how it’s working and how it thinks differently and sees differently.

Acceptance. 

We keep pushing Sam to change, and here we are, changing all the time, too.

Happy World Autism Awareness/Acceptance Day from the DSM Fitz Fam.