Lately I have been thinking a lot about hope.
The more I think about it, the more I realize that I'm really grappling with the difference between hoping and wishing.
We always knew that something was up with Kimball. He had some brain damage when he was born, so his delayed development and general quirkiness never really raised our suspicions. Anahí was really our key to seeing that something else was going on. For months Betty tried to tell me that something was wrong with Anahí. I couldn't see it. When Betty mentioned autism I flatly refused to entertain the idea. I'd seen kids with autism. They flapped their hands and rocked themselves in corners and most of all they had NO emotional attachment to the people around them. Anahí was weird, but I felt so much love for and from her that I felt there was no way she could have autism.
As I look back on it, though, I realize that deep down I knew that something was up, but I hoped -- or rather wished -- that it wasn't so. It took several months for me to come around to the idea that something was going on. Once I realized that, it was natural to talk to her pediatrician and then to get a diagnosis.
I say natural, but not easy. We had some of the same concerns that I see in other parents who worry about getting a diagnosis for their child. Specifically, we worried about Anahí being pegged as disabled and then having people either treat her differently or using it as an excuse. I'm so glad that we pursued the diagnosis. There is an enormous difference between thinking that your child might have autism (which also means that there is hope or a wish that your child might not have it) and facing the reality that there is something going on with your child that you don't understand and that you need help.
After Anahí and Kimball were diagnosed I immediately found myself being more patient and understanding. I was able to put a name to this thing that was making our life hard and I was able to fight to try to understand it. The head-in-the-sand wishing that there was nothing wrong had completely turned into boots-on-the-ground hoping that there was something I could do to help my kids to be happy and successful.
Since then I have seen people approach autism from a variety of angles. Some people deny that there is anything wrong and tell us that we should just love the children as they are. Some people describe the condition as a disease and hope to find a cure. I find myself somewhere in the middle. I love that my kids are unique. I love to think that they have a special gift and are able to see the world in unique ways. I would never want that to change. But autism is also brutally hard to deal with sometimes. I believe that even the most accepting of parents would want to help their kids to at least be able to cope with the tough stuff that comes with having autism. I don't care, for example, if Anahí or Kimball have a million friends. I do want, however, for them to know the joy of friendship. I don't care if they have a million dates in high school, but I do want for them to be able to find someone in the future who will love them and be their companion for forever.
After our kids were diagnosed, we tried a bunch of different things to try to get them to make progress. We paid loads of money for a psychologist to tell us that we needed to make a reward system based on candy to train our kids into good behavior. That just felt wrong. We are still paying for the ABA therapy that Anahí received in Orem. It was helpful, but as soon as it stopped, she regressed. Both of these approaches treated the problem of behavior from a standpoint of behavior. We were training our kids like dogs.
Then we found Brain Balance, a program that offers hope in the most terrifying way possible. They suggest that autism is not a mysterious disease caused by unknown pathogens, but that it is a condition if not caused by at least largely exacerbated by the environment and lifestyle in which we parents have raised our children. As a parent, that is tough to hear.
I often hear parents talk about autism as if it were a terminal illness about which they can do nothing. If that is the case, the best you can do is make your child comfortable and mitigate any damage they might do to themselves, to you, or to your family. I called the cable company the other day to cancel our subscription (it's a lot of money to pay for a family that largely doesn't watch TV anymore), and I told the lady that I was cutting because we have children with autism and we have decided to not watch TV anymore. She replied by telling me that she has an autistic child and that all the kid does is watch TV. She acted like I was a crazy person or cruel for not letting my kids watch TV. It told her that I was involved in a program that was changing my kids life forever.
So Brain Balance offers hope. Why do I call it terrifying hope? Because with hope -- real hope, not wishing -- comes responsibility and realization that the things we do impact our kids. When you really hope that you can change the trajectory of your child's life you also have to take on the sometimes terrifying but also empowering thought that if you don't act appropriately you will someday be held accountable (if only by yourself) for failing to unlock your child's potential. You realize that you are going to have to work harder than you have ever worked at anything. You realize that you are going to have to change your own habits so you can be an example for your kids. You realize that there is active work to be done.
It would be much easier to plop the kids on the sofa, fill them full of junk food, and take a break, telling myself that they are the way that they are and I'm helping them to be happy and comfortable in a world in which they will never fit. It is much more difficult to turn off the TV, put on our exercise clothes, throw the junk food in the trash (where it belongs), roll up our sleeves and get to work on this long road without any real guarantee of how much payoff there might be. With Brain Balance, as with anything really valuable in this life, there are no guarantees, but there is hope based on experience.
When I see the kids doing their exercises, it is not always clear exactly how Brain Balance is helping. I'm not a neurologist and I can't always see a direct line connecting an exercise like Cannonball and improved social interaction. But Brain Balance more than anything else we have tried helped us to see that we have a part to play in all of this. We are not victims, and we are not bystanders. As parents our job is not damage control it is construction. Our faith and hard work have already led us to see huge miracles — including years of development in a period of a few short months — in the lives of our children. Now our hope is turning into something stronger. We have seen that our efforts pay off. We have seen that these kids can make huge strides if we give them the right environment.
We can only hope for more.
As always, please feel free to comment on and share this post with your friends and family. We hope our story helps other people working with children and adults with autism. Feel free, as well, to click on the thermometer and donate to help us pay for the Brain Balance program that has done so much for us. Every little bit helps!