Summer is not for blogging

So many great things happened this summer. I wanted to tell you about them all. But here's the thing: Summer is not for blogging. So, now that it is November and I would like to move on to blogging about Fall and Thanksgiving and soon Christmas, and then HIS NINTH BIRTHDAY, I feel that I should first tell you about the things I learned this summer.

Trojan Elementary has the absolute best staff on the planet. (Ok I already knew this.) But then the principal GOT ON THE ROOF and threw candy to the kids on the last day of school. We hugged and took pictures and hugged and took pictures. These people had my son for three years, but will have my heart forever. 

Applied Behavioral Analysis makes my life... Hard. But good. Easier. But more complicated. I can't even describe it. But Applied Behavioral Analysis gives Waylon a life. These are his people. They get him. They work hard to make Waylon more successful at life. So many sacrifices go into getting this guy to Kids TLC every day, but his life is so much better for it. And the picture they sent me with the sleep mask on? DYING.

We can do anything you can do, better. We went to the zoo with cousins one day this summer- which could have been a real disaster. I had low expectations for a meltdown-free day. Escape routes were planned. Then I went bezerko when Waylon jumped in the train next to Caden instead of me and I had to sit two rows away. (WHAT IF HE FREAKS IN THE DARK TUNNEL?) Turns out, we can go to the zoo just like any other family and ride the train without going bezerko. Caden was totally stoked to sneak two rows away with his brother. These people are just the best kids ever, really. 

Siblings are life. This is also something I already knew. I mean I should be an expert on sibs, after all. My eight siblings {and eleven sibs-in-law} are the bomb-diggity. Any one of them would drop anything for us- in fact, they frequently do. They take Waylon to and from therapy, they keep an eye on him at family events, and they even cut his hair (which is no small feat). Funny, because I think I have ran to my room, slammed the door, and screamed into my pillow "I HATE YOU!" to each one of my siblings at least once in my life. So I know these kids don't come close to understanding how lucky they are to have each other. And I love watching their sibling-ship grow.

Growing up when you have a developmental disability is weird. Every new building is like the first day of preschool again. What if he misses me? What if he can't find the bathroom? What if they don't know he likes chocolate milk instead of white? It's harder to see, but it's really happening- he's growing up. On enrollment day this year, my little guy signed his own computer use agreement. No surfing dirty websites in 3rd grade, dude. 

I'm just not ready to let him go

Some people say autism is a gift. Some adults living with autism even say if there was a cure they wouldn't want it.

I don't understand. 

The fact is: My son, who was a beautifully bright-eyed, interactive, and happy one year old, was taken from me by a disease for which there is no cure, at age two.

Clinging to the "bargaining" stage of grief, we fought and fought and fought the battle. We bought silly expensive therapy videos online that promised our child would start talking within weeks. We invested in supplements that others had claimed "did wonders" for their autistic child. We drove him to a therapy center 90 miles away for early intervention that we knew would help him beat this before he even started school. We would've lassoed the moon if someone had promised it would take his autism away.

Like any disease, he experiences cycles: hints of promise followed by periods of regression. A severe regression last Spring caused him to be removed from school and placed back in a full time therapy program. Just weeks ago we were hopeful that his therapy hours could decrease and he could return to his class, but now the cycle is coming around again and the therapist has recommended an increase in hours instead. 

I'll admit it: I've been in denial. But it's becoming more and more clear to me now that this therapy is palliative. We are beyond early intervention, and although I always knew it was a long-shot, it is now clear that his prognosis for truly beating autism is poor.

Part of me says, "I give." Autism wins. 

But I'm just not ready to let him go. 

Autism is not a gift. Waylon is a gift.

And he is my hero.