Read an Excerpt
Introduction:
Enjoy Life, Even if Autism Is Along for the Ride
Like most women today, I do a lot of things. But mostly, I'm a mom. Various other words have been added to that description over the last ten years: I'm a mom of three. I'm a mom of twins. I've been a working mom and a stay-at-home mom. I can be a kind-of-strict mom and a sometimes-silly mom. I'm a mom who cooks. But perhaps the label that defines me best is that I am the mom of a child with autism.
My son was a little shy of two years old when he was diagnosed with autism. My experience was not much different than that of a lot of other parents I know. My pediatrician missed the signs even though we pointed out concerns. We beat ourselves up for a long time for not getting him diagnosed sooner. And I was in my last month of another pregnancy (twins) when the psychologist said "that word." No matter what my husband and I thought when we stepped into the office that day, we were not ready to hear it.
It changed everything. And I'm sure it changed everything for you too. Even if your child is not on the autism spectrum, if he or she has special needs of another kind, you've entered into that new world where your family falls outside "the norm." There are a zillion things you are supposed to be doing along with everything you already do. And there is never enough time or money to do it all.
We need to change the way we see ourselves, the ways we parent, our immediate future, and our long-term future. But we go on. We put it into some kind of perspective, and we change. And almost immediately, we get busy trying to overcome it. Every family has different experiences and outcomes with therapy or intervention. But every single one of us works hard to procure and provide something therapeutic every single day.
Every child with autism is completely unique, so all of us modify our lives to accommodate the particular variety of autism that affects our family. I know that my child's issues aren't the same as your child's issues. But no matter how different it is for us, we have a lot in common too. One of the biggest things we have in common is how much we worry. We don't know what the future holds for our kids, and there is a lot to worry about.
There are difficult days, exhausting days that sap all of our resources. We spend so much time arranging and performing therapy, finding funding, driving from appointment to appointment, researching, furthering battles with insurance companies, continuing dialogues with caseworkers, and negotiating with school districts. And of course there's everything else that parents do, like grocery shopping, working a job, housecleaning, pediatrician and dentist visits, and so on. But every routine thing is a lot harder than it ought to be, harder than we expected it to be. Even as years go by and things get a bit easier, they will never be as easy as they are for everyone else, not by a long shot.
The impact of all of this is that each day is hard. We're spread too thin. There are days when autism feels like a lifetime punishment for an unknown crime. We look at friends who are arranging playdates, signing up for summer camps, or planning birthday parties with ease and can't help but wonder: Why isn't it that way for me?
I went through a stage when every little boy I saw made my throat tighten. I had to look away from every child I saw in the supermarket because every little boy in the world seemed to remind me of what my son was missing, what I couldn't give him. Instead of running around exploring the world and drinking in life, my little boy was working endlessly and painstakingly to learn concepts that seem to come naturally to everyone else.
But the biggest mistake we can make is to put family fun at a low priority. It is easy to be consumed by the role autism forces us to play. We are caretakers, therapists, nutritionists, nurses, taxi drivers, and so much more. But for the sake of your child and your family, having fun needs to form a central part of any intervention and therapy you pursue. The best way to increase your child's connectedness and ability to form attachments is to make sure that spending time together is as rewarding as possible. So often when treating autism, the term "reward" is used to describe a tangible or fleeting benefit provided by an adult who is trying to coax a desired behavior. There are styles of therapy built on the premise that controlling rewards leads to desirable behavior. But the feeling of reward that comes from access to a toy or earning a sticker is nothing compared to the feelings of joy and satisfaction associated with having fun with the people who are part of a child's life every day. In order to teach your child that connecting with family is rewarding, you have to make it rewarding. It has to feel pleasurable, warm, and gratifying-not momentary and fleeting and immediately followed by another demand. Pay attention to what your child considers fun and then put as much effort into enjoying a day together as you do into procuring therapy. Because the pursuit of fun is therapy in its own way. And it has outrageous benefits for the rest of the family too. Having a child with autism in the family pushes us to seek out interests that are off the beaten path, to find experiences that especially might work for our spectrum child. Setting out on the popular family fun activities probably won't fulfill us, because they have been generally manufactured to please the most typical kind of family, and we can't be called one of those. We need to modify usual destinations to work for us or sometimes avoid them completely. So we need to get creative, try new things, and take chances. If necessity is the mother of invention, creativity is the maiden aunt of autism. (You may not have to include her in family time, but when you do, it is always more fun!)
Try to enter weekends with an open mind and a sense of adventure. Discover new experiences together and activities that work on some level for everyone. Of course you can continue to enjoy and repeat the tried and true...but try to add one new thing! No matter what you decide to do, if you approach your time together with a sense of fun, it will bring your family closer. Running from appointment to appointment is real work, for you and for your child. It is work for his siblings too, whether they go along to wait or simply miss out on their parents' attention. There have to be times when you turn off the work and relax and enjoy each other's company.
And even if a little voice in the back of your head is saying, "Wow, this might strengthen trunk muscles" or "this encourages language," turn down the volume on your internal therapy voice as low as it can go. It should be drowned out by another voice in your head, the one shouting, "Whoopee! This is FUN!"
