Another late night stream of consciousness, this time, about autism and its joys...
Here's the thing about Autism. It sucks. It really does.
I can say that, being a parent of a 2 year old who was diagnosed last year, and us only beginning to see the effect it has on our son.
Here are some things that a
...gives us things upon request
...engages in pretend play
...uses 50 or more recognizable words in talking
...asks "what's that?" and "why?"
...points to body parts like ears, nose and eyes upon request
...draws lines with a crayon
...walks up the stairs using railings
And also, he can't say "Mommy" or "Daddy". He can't say "wuv you" to us. Our two year old has the developmental skills of a 10 month old. And its tough.
We met with a therapist tonight who works with autistic children... and she really gave us a good rundown of what we are doing right (some), what we are doing wrong (some), and what we need to be doing going forward (a lot).
But she did toss in this little nugget: "He's not severe... he'll be fine with some work."
Besides development, its a sensory thing too... when the TV is on the wrong channel, and its just a big blue screen, he can't handle it and freaks out... he has musical toys he puts right up to his ears and walks around so he can hear the music... we were told that when you walk down a hallway at a brisk pace, and feel the wind on your arms as you walk--he doesn't feel that... or at least, he doesn't know he does, because his brain doesn't know how to understand his senses... as quick as he tries to eat, we aren't sure he can even taste some things he eats, because we aren't sure his taste buds are connecting with his brain yet... its a weird thing.
And yet, we are blessed... many other autistic children as far below where Campbell's development is. Our son has more opportunities than some children will ever have, and more hope for a better future.
That still doesn't take away the sadness of what we want him to be right now.
But then, that's selfish, isn't it? What WE want HIM to be?
Could it be... or how about, it IS that Campbell is exactly who God wants him to be right now...
It's when we realize that young Campbell Isaiah is who he is for God's glory. God's ultimate glory is to glorify Himself, and what is best for us is to glorify Him. Campbell will be used to glorify God now, and in the future. We know it.
We then have the power to step back, and stop mourning the things Campbell cannot do... and start celebrating the things he can do, start reveling in the things he does every day...
...give kisses to us when we take his pacifier out
...climb up in your lap and just lay back and watch TV
...roll a big red ball all over the floor, giggling and laughing as you roll it back to him
...dip peas out of his bowl, shoveling them into his mouth
...eat just about any fruit or vegetable you put in front of him
...sing along in a high pitched wail when he feels the urge
...fill a diaper like you wouldn't believe... wait, that probably is not a good example...
...give you high fives upon request
...watch WWE Raw with Daddy and love it... wait... no, that was a great example...
Perhaps these are all things that any
Campbell has Autism. Autism doesn't have Campbell. He's not severe. He'll be just fine, with some work.
(That sounded like the world's worst bumper sticker... terrible...)
Also, check out my friend Alanna's blogpost "GENIUS", in which she writes, better actually, on the same topic concerning her family and her son Aiden, who is on the Autism spectrum.
Here are other links on our autism journey with Campbell...
Learning the A-Word, written right before his diagnosis (8/22/13)
The Journey Begins with a Grin, a sweet story of Campbell, letting us know it'll be alright (8/24/13)
My Kid Has the Autism, written a week after his diagnosis (8/29/13)
To Campbell on His 2nd Birthday, my second birthday letter (12/4/13)
(8,631 words written for #20KWords in March... 11,369 to go)
What a great post David. I think every parent needs to meet their kids where they are at, adoring them for what they are rather than mourning what they aren't. I look forward to learning this lesson with our baby girl on the way.
ReplyDeleteI also appreciated as an uncle of a sweet boy on the spectrum (not fully Autistic, but he's got the sensory part). It requires a big mental shift.
All that being said. I am looking forward to your book, whenever you get it written!
I love this post so much David. So thankful to call you my friend and watch your family's journey and all that God is doing through you guys.
ReplyDeleteThis past week was a rough one for Aiden and I started to slip back into that place of comparisons. Yesterday I thought to myself that I needed to go back and read those words from Genius to remind me that all of us are different and that Aiden is going to be just fine. Just hours after those thoughts he picked up his bike and started riding it for the first time. As you know that was a huge deal. All of these things together, it's like God whispering again that everything is going to be okay :)
That's the trick, ain't it? We have our own set of milestones, our own set of triumphs that parents of typical kids may not see as important. I know you struggle with Aiden, I read up on you here and there--you'll get it. He'll get it. You guys are awesome.
Delete