Regardless of who you are or what you do in day-to-day life at some point before you had children you thought about, no imagined, what being a parent would be like. And no matter how grounded or practical you are, you imagined the Kodak moments. Perfect pictures hanging on the walls of boo-boo free smiling kids, middle of the night serenity fixing a bottle for your sweet smelling bundle of joy, 10 toes and fingers. In other words perfection. Nowhere in that Kodak moment did you imagine a label or that your child would be a statistic.
Now fast forward to reality. You know the one where the kid with stitches in his forehead from falling off the bed cuts the other’s hair the night before pictures, where you pretend you don’t hear the baby crying in hopes that your significant other or the baby fairy will get up and give the baby a bottle, and you routinely leave the house with baby spit up running down the back of your shirt. Also imagine your blue eyed wonder who can’t stand to have the curtains open, who lines up everything he can get his hands on from books to cars to legos to blocks, screams in absolute terror when a stranger comes close to him, doesn’t seem to recognize people outside of the context in which he usually sees them such as the babysitter in the grocery store, and stops using the two dozen words that he once said with perfect clarity.
You plead with the pediatrician for testing and then sit through days of absurd tests and seemingly endless piles of forms. You alternate between thinking the process is ridiculous and that no 2 year old should be expected to know or do these things—how crazy are these doctors---and desperately hoping that they will come back with a diagnosis because you know something just isn’t right. Then someone comes in and tells you that your child has a condition and then suggests that you contact your local resources asap because most agencies are understaffed, severely under budget, and often have months long waiting lists. You can’t imagine how this will be a problem because you have insurance only to soon find out that insurance doesn’t pay for most of the therapies associated with this condition and that providers are in short demand.
You start to do your research only to learn that your therapy options include programs that demand 60-80 hours of extremely regimented work 7 days a week, medication options, supplement programs, dietary change, in-home interventions, facility based programs, speech therapy, occupational therapy, physical therapy, music therapy, listening therapy, metal detox programs, hyperbaric chambers, horses, dophins, and the list doesn’t end. If you are starting to feel like you are drowning, now add in the fact that no one can tell you which program is right for your child although many will criticize any options you choose and all will tell you about the “crucial window.” If this window closes before you’ve acquired language, your child may never be verbal. If this window closes before you’ve figured out how to help your child bond with others, your child may never be able to have social relationships. Welcome to autism.
For us the world only stopped for a few minutes in November 2008 and then we went into action mode. We quickly realized that we had to pick therapies that we believed in and those that matched who we were as parents. With that label everything but nothing changed in our lives. When we walked out of the therapist’s office we still had a beautiful blue eyed little boy who adored his big sister, who loved Christmas lights and Thomas the Train, and who made us smile and laugh every single day. We still had the perfect toddler who loved us unconditionally even if he couldn’t say it and who we loved unconditionally and told him so every moment of every day. We also though had a daughter with a life threatening medical condition that we were pretty sure Caden had as well and we knew routines weren’t going to ever work for our lives. We knew that strict adherence to schedules that made both of our kids unhappy wasn’t going to work for us either. We decided that we wouldn’t work with anyone who didn’t believe as fully in our son’s potential as we did and we have gone through a lot of therapists over the last few years, not hesitating to move on when a provider failed to meet our expectations for our son. In the spring of 2009 we learned about autism service dogs. We knew it wasn’t a cure but it fit with the importance of animals in our lives and our belief that a service dog could provide safety and consistency for Caden in a gentle and unconditional manner. Now we are less than a month away from meeting our doggy angel and learning all that training entails. 10 days in a hotel room is going to be a challenge with a little boy who doesn’t like to be away from home for more than 2 or 3 days. Being away from Ryley on her 11th birthday (a birthday doctors said she would never see), even though she’ll be being treated like a princess at grandma and grandpa’s, is going to be agonizing. But through it all I’ve managed to hold to my Kodak imagination….want to hear about how I picture Caden and his beautiful service dog instantly recognizing each other in the chaos of kids, families, and dogs and running across the room to meet each other in a moment of instant love. What can I say, label or not, we parents are hardwired to dream in perfect details.