Someone recently asked me what it was like to live with autism. While I would have loved to have given her a simple and concise answer, it’s just not that easy. I’m not sure that I could describe autism by the hour, let alone generalize to a week or even a day. Of course my tongue-in-cheek answer would have been maybe you should read my blog—it’s not called Caden’s Tale for no reason but after some reflection the second part of my answer (for OUR family) would have to include:
Living with autism means that you find some of your best support in people that you’ve never met. This isn’t meant as an insult to any of my “live” friends but let’s face it you have lives outside of autism. You also just don’t always know what to say, justifiably so, because it isn’t an experience that you are living (hint though, the answer doesn’t start with “Oh such and such was a late talker too,” “Maybe he’s just shy,” “Have you tried discipline?” “He looks okay to me,” “I bet he’ll outgrow it,” and well you get the idea…right, you get the idea, don’t you? Please tell me you get the idea because well, see the above point about being really tired.) “Friends” online are sometimes the closest I get to finding someone who really understands or talks about poop, sensory friendly clothing, lack of sleep, wandering, overload, meltdowns, wuzzles, IEPs, never-ending therapy, chewies, and how precious a single word can be as much as I do. These online friends also save you from having to listen to me rant, moan, scream, and cheer over the same things seemingly over and over again. Speaking of friends…
· Living with autism means that sometimes life gets lonely. Finding a babysitter that you can afford and who you trust to leave with a child who can sometimes be exceedingly frustrating and difficult to communicate with is usually next to impossible. Spouses have no alone time and friends get tired too. Eventually the invitations stop coming and I totally understand that. Most days I’m okay with that because I love spending my time with my husband and our beautiful kids. But once in a while I find myself imagining a “date” night with my fabulous husband or a message on voice mail inviting us somewhere with someone for something.
· Living with autism means that sometimes a disaster gives you the chance to create something new that’s better that you could have imagined. For example, a few years ago trying to take the Christmas tree down was a total and complete disaster. Caden had gotten use to the lights and he looked forward to turning them on in the morning and again at night. We eventually gave up and just took the decorations off and redecorated for Valentine’s Day, St. Patrick’s Day, and Easter. Then we put our house on the market and our real estate agent made us take the tree down. We don’t leave our tree up year round these days but we do decorate our family room for every holiday and season you can think of (including a few we don’t even celebrate). It’s fun and playful and makes the family room a special place to hang out.
· Living with autism means that sometimes you wish you weren’t. Interestingly it usually isn’t the big stuff in our lives that gets to me. Let’s face it between autism, sensory processing disorder, asthma, allergies, gi issues, and the immune deficiency we deal with a lot of big issues so these are (as strange as this is going to sound) rather routine for us. It’s the little things like never going out to eat, not having professional pictures taken, not going on playdates that sometimes sneak up and kick a person when they are down. It’s not having a Santa or Easter Bunny horror story or trying to fill out the “kid book” that hammers home how un-normal our lives really are.
· Living with autism means learning another language. This language seems to be made up of an infinite number of letter combinations that everyone in the autism world seems to expect you to know. Days are filled learning all about the benefits of EI, if you are ABA or no, if you have enough hours of PT, OT, and SLP, agonizing over IEPs and IDEA, and knowing that you are truly living ASDs and SPDs.
· Living with autism means that you look forward to and dread the future all at the same time. I can’t wait to see the person who Caden becomes and all that he can accomplish in his life but I worry about who will take care of him if he doesn’t progress far enough to be able to be independent. More often though I find myself wanting to slow time so that he can just have a few more minutes to work on a word or a skill or a behavior because I believe with my whole heart that he’s going to be this remarkable man who has a profound impact on those around him. He’s going to be happy and surrounded by people who love him almost as much as I do.
· Living with autism means that I don’t focus on autism all that much and instead look at Caden as Caden. Other than a label and access to some resources, nothing really changed in that moment when the team said “you probably already know this but it’s autism.” He was and is my beautiful blue eyed child who has an incredible sense of humor, can add and subtract in the thousands, will sing at the top of his lungs when he doesn’t think anyone is around, and who loves his Ry Ry and Elf more than anything in the world (although blankie and pacifier are close runners-up).
I’m pretty sure this wasn’t the answer that she was looking for when she asked me what life with autism was like but this and probably a hundred, no million, other things describe our daily lives. Like I’ve said since I started this blog—Some days the stories are adorable, some days they are horrific, but it is all just a part of Caden’s tale!