Light It Up Blue 2.0
It’s World Autism Awareness Day! Here’s an update of our experiences since my light it up blue post last year.
The last year by the numbers:
- 2,000 miles driven for autism related therapies and appointments
- 5 therapists worked with
- 1 autism center quit
- 2 IEP teams collaborated with
- 1 therapy graduation (occupational therapy)
- 1 gajillion forms filled out
- 6 seasons of Parenthood watched
The past year has been a learning experience. We’ve learned that not all autism centers are created equal and that sometimes driving farther to see a better therapist is worth it. We’ve been touched by friends that volunteered their time to watch our kids so we could attend various meetings and classes. We’ve been grateful for good insurance and that we live in a state that has health insurance mandated autism treatment. We are slowly building our “village.”
To many outsiders, we seem like a completely normal family since right now Cooper is often able to hide behind shyness and being young. When I tell people he as an ASD diagnosis half the people are surprised while the other half realize that was the thing they couldn’t quite put their finger on. We aren’t completely sure whether it will become more or less obvious that he’s on the spectrum as he gets older – only time will tell. Often, even we go long stretches where we forget he has a diagnosis, but it always has a way of sneaking up and slapping us in the face. Sometimes it happens when someone mistakes him for a younger child or when a friend posts about the hilarious thing their kid just did. And often it happens when I pick him up from preschool and other kids excitedly spout off paragraphs about what they did as I ask Cooper simple questions based off the cheat sheet his teachers give me every day. In those instances, it’s so easy to get discouraged and forget how much progress he’s made.
Probably one of the hardest moments of the year was when Cooper participated in his first Primary program. It’s one of the best Sundays of the year where the kids provide all the talks and music for our main church meeting. We knew this would be a challenge and were nervous about him being on display for everyone, but were optimistic. Cooper is familiar with many of the people in our church community and the Primary president, a family friend, would be helping him with his part so we really thought we might be able to pull it off. We practiced the part at home and Noel attended the two rehearsals. Additionally, we took him to the church when no one was there and let him practice talking into the microphone and saying his part to an empty room. When the big day came, we held our breath. Every kid (including the ones his age) said their part in the microphone and sang songs in the funny way kids do. Their parents beamed. When Cooper stepped up to the microphone he just stood there stiffly with a goofy grin on his face and scrunched up eyes. When they sang, he flapped his arms, picked his nose, and stared into space. Afterwards, people told me, “It was so cute the way he waved his arms up there!” “He’s shy, but with more practice he’ll get it!” They were all well meaning. I did my best to smile and not cry or yell, “You know he has autism, right?!?!” It could have been worse, it really could have, but still our heart ached that we couldn’t just blend in. And the hardest part? He knows every word to those songs and probably had his part memorized.
The kids have no idea what autism is or that Cooper has an ASD diagnosis. Right now, Cooper just thinks he has special adult friends with cool toys. Honestly, Ellen will probably figure it out before he does. One time when I took Cooper to speech, Ellen turned to him and said, “I’m going with [the therapist] and you’re going with mom, okay?” I told her that’s not how it works, that we come here for Cooper to see his speech therapist. She seemed fine with the answer, but it’s only a matter of time.
Even though there are hard and frustrating moments, sometimes autism can be funny. Ellen was being particularly saucy one day and I asked her, “Are you being a sassy pants?” She replied with, “I’m not being a sassy pants! Cooper’s a sassy pants!” Cooper, who was flying an airplane around the kitchen, paused, looked down at his pants and then looked at me with a puzzled expression. Clearly, his pants weren’t sassy. Through it all, he’s a genuinely sweet kid that’s actually quite intelligent. It’s just unlocking it that’s sometimes the challenge.
As a parent of a child with ASD, we often feel a huge responsibility. I know every parent worries about doing the right things to help their child succeed, but when you have a kid with a disability it’s so easy to feel that if you don’t try the right diet or therapy or eliminate the right chemicals from your lives, your child, and by extension you, will be a failure. It’s a challenge to figure out the balance of letting Cooper be himself (and being okay with it) and getting him the help he needs to thrive in this world. We have the luxury of his autism not being incredibly obvious, but with that comes the burden of figuring out how to share this fact with others. I personally struggle to know how and when to mention his autism, not because I’m embarrassed, but because on some level I feel like I’m betraying him, but at the same time I feel like I’m betraying him if I’m not open about it. I just don’t want the subject of autism to be his awkward life-long icebreaker; I want people to see him as Cooper first and foremost.
Autism is a hot topic right now. While in some ways I’m glad it’s getting attention, sometimes the theories get tiring. As a parent of an ASD kid it can be frustrating to see your child turned into a statistic that gets thrown around whether it’s in scientific studies or stupid articles people share on Facebook. The next time you read an article about autism, just take a second to remember that people stand behind those numbers and that correlation doesn’t always equal causation. (Honestly, this is good practice for most statistics.) I don’t claim to be an autism expert, there’s a lot I’m still learning, but if you ever have a question I’d love for you to ask. Really.
They have a saying in the autism community that “If you’ve met one person with autism, you’ve met one person with autism.” Our experience is ours only. Some experiences are harder, some are easier, but for most of us, it’s a crazy combination of hard and easy.
7 thoughts on “Light It Up Blue 2.0”
Cooper is a fine grandchild. Although I haven’t spent as much time as I might of, if I were to live the lower 48, I still enjoy every minute that I get the opportunity to do so. I have had the luck to spend time with a good number of people who have had some diagnosis or other. I still don’t know any of them to be their diagnosis, but rather a very unique individual with a lot of surprises to offer. Some say you get use to those who have more difficult challenges, but I am always surprised by the unbelievable experience I get to enjoy when I encounter anyone out of the boring norm. Cooper is special to me because of how much I love him, and the DSM V diagnosis that try to classify him leave out more than they entail. Everyone I know seems to fall into some kind of diagnosis. The diagnosis’s exist so that the government can qualify some kind of a number to the needs of us all. Cooper may not be the same as the rest of us, but who is? There is always somebody with their foot in their mouth when they try to predict the productivity of another in this world. I would like to think that I am here to share with the experience of what is possible and to join in with those who have a dream of seeing the impossible. The last thing I would like to say in this comment is to Cooper is that ” Grandpa will always love you” as I should.
Audrey, your parenting posts always strike a chord in my mom heart. You are always so open and real, which encourages me to be more so. I enjoyed reading about Cooper and Ellen’s interactions, it reminds me of my boys. Sam is doing speech this year, and Andrew keeps on both surpassing and then correcting Sam on some pronunciations, while at the same time asking when he’ll be big enough to go to speech with Sam ;). My mom heart also ached during the Primary program when Sam said his lines and some of the older boys started snickering at his pronunciation. There’s that quote about how having a kid is like having your heart walking around outside your body. It’s so true. So I’m so glad for friends, family, and other moms that are there sharing, cheering, and helping along the way. So anyway, thanks for sharing your experiences! This mom stuff is emotionally heavy sometimes and it’s so nice to get away from the picture-‘perfect’ mommy blogs.
It definitely does feel like my heart is walking around outside my body some days. I’m so sorry the older kids snickered at Sam. I’m afraid my inner momma bear might have unleashed!
*And by mommy blogs I’m talking about the ones who always post perfectly staged pictures, kids, make-up, clothes, houses -pretty much unrealistic everything 😉 – aka lovetaza.com
I forgot about that blog and how annoyed it makes me. You can definitely count on plenty of imperfect posts from our corner of the blogosphere.