Friday, August 24, 2012

Inspiration Comes in Many Ways

I've wanted to write about this for a long time, but the words and where to start have escaped me in so many ways. 14 years ago my oldest son was diagnosed with Autism. At 2 1/2 years old he spoke less than 10 words and did not string any of them together. What would be "typical" at this age is somewhere around 100 words with some simple 2 word strands put together. He would line up his toy cars, throw screaming fits when they did not stay in place, and did not respond to his own name being called (but would dance when he heard music). He did not make any eye contact, and would try to defy gravity with Lego towers arranged in upside down "L" formations, leading to more  screaming and crying fits lasting for hours when this did not work out for him. There was no pointing when he wanted or needed something, only screaming and crying and tantrums. He was almost 2 before he started walking, but once he was walking he was running!
I knew what was going on from reading an article in a magazine, I just didn't have an official word for it yet, given by a doctor in a white coat who was supposed to be an expert.
After months on a waiting list, we finally went to see a specialist. Who, not to my surprise, told me my son has Autism. Okay. Now what? "Well, he may never speak more than he already does. He may not ever want to play with other kids, he may not ever grow out of his tantrums. You can go online and Google Autism and find some support groups, and here's a class you can take about what Autism is. There is no cure." Okay. Really? That's it? That's the best you can do with all of your expertise and your medical training? You are going to tell me all the things you think my kid cannot do and nothing about what is possible? I think the doctor was expecting me to cry. But why? Now that I knew what the issue was we could get to working on it. So what? It's not a death sentence. It just means he learns differently. Now my job was to figure out how. Let me tell you, Mr. Dr., my son will do whatever he pleases. If he wants to talk, he will talk. He will do whatever he dreams of doing, I will not set limitations in the form of can't. That is the one thing I can't do.
So, he got speech therapy with sign language, and once he started talking he did not stop! Rapid talking, non-stop talking, repeating things, laughing, asking me over and over again after jokes, "Is that funny?" Sometimes I missed the silence, but I have always been so happy for the words and the tantrums faded, but did not completely disappear. Okay, barrier 1 knocked down. Anytime I think something is too hard and I can't do it I just go back to this.
But it gets better. Way better.
Sit down, buckle your seatbelt because the rest of this story is a ride you don't want to miss.
Fast forward to about 3 years ago. Let's just say puberty and Autism were an ugly combination for my son. Ugly being a bit of an understatement. So this kid who is "not supposed to" want to play with other kids had become a social beast. He wanted to be in the middle of everything- playing sports and being with all the other kids. P.S.- he had really poor hand-eye coordination and taught himself with hours of practice how to shoot hoops and throw and catch baseballs and footballs. Practice, practice, practice. He would not give up. Well 12 and 13 year olds don't always follow the rules when you play games at recess. This caused meltdowns at school, phone calls for me to pick him up, suspensions, all kinds of mayhem. It was like a repeat of a 2 year old's tantruming but in a big boy body. During this time I could feel my heart literally breaking inside my chest. I did not know what else to do or how to help him. Sadness and despair filled his words and tainted a school year that was supposed to be fun and full of happy memories. My boy who is so smart, silly and full of life and laughter now spent his days asking why, telling me it wasn't fair. I took to reminding him (and then myself) that "it is not about what happens to you, it is about how you choose to deal with it." I would drop him off at school know I was going to get a call to pick him up later that day. My own anxiety level was sky high. I could not breathe. I felt most days like I was going to have a heart attack and my heart was going to just give out and stop beating. I needed to learn patience on a whole new level. This was so unfair. I did not know how to help him. I wondered sometimes how much more our family could take. You know the saying things have to get better before they get worse? Yeah, you could say that happened.
I had to quit my job because the calls to pick him up were happening everyday now. He was getting suspended from school so much- they just did not know what to do with him. This was not for lack of everyone trying, but what happens when a kid doesn't fit the typical mold that they are supposed to squeeze into?  This social issue was a whole new problem for the autism experts. I tried home schooling him, Skyping science lessons with the school from home, and working up to going back to school, one hour at a time, leaving out what would be the problem areas. He would make some gains and then it would become too much again. In the end, he was expelled from school. The district gave us 3 schools to look at. One, a mental institution who told me "kids on the spectrum don't do well here at all.", another that required the kids to self report every hour in front of the whole class and receive feedback in front of everyone about how they did (this seemed spirit breaking and degrading to me), and then another school where the kids seemed happy and had a lot of structure. After a lot of tears and discussions we reluctantly sent my son to this new school. He wanted to be with "lots of kids" and in a big group. This was for sure not that. He was extremely motivated to get back out into the world with the big fish. He had a few bumps but nothing like what he was doing before. Things started to get better. And, in record time, just over a year, he was transitioning back to a regular Jr. High School. He started out  by trying out for the basketball team but got cut, so he kept stats for the Jr. Varsity basketball team at their games. He told his teammates what they needed to do to catch up or to win, cheered them on, told them how well they were doing. He made friends with the kids and their parents, asking who their son was and telling them how the game was going for their kid. The boys on the team voted him "Most Inspiring" at the end of the season. We added classes at the Jr. High, one class at a time. Until we got to 3 classes, and then, ahead of schedule, we added the rest because he was doing amazing and loving school. He joined the track team and was elected one of the 5 team captains by his peers.
I was told his transition was made in record time- that they had never seen a kid transition out of a program so fast. When he makes up his mind to do something, he does it! And now my son is playing football with the high school boys. Because this is his dream. Don't get me wrong, I am super uncomfortable with my tall, super skinny guy running amongst boys at least 2 times his size. But who am I to say "you can't" when already he has shown me "I can, and I will". Every day this amazes me. Regularly I remind him of this. When he tries to tell me "I can't" we re-frame it. Anything is possible. Anything.
On a side note, as everything was falling apart something interesting happened. I realized I needed to find a way to control my own stress, so I could help both of my boys better. This is when I found yoga. From the first class I knew this was what I had to do. For an hour I could breathe, I did not have to think about everything else going on around me. My mat became like a big pit that I could throw all of the stress, anger, fear, frustration and sadness into. I would walk out of class and have messages on my voicemail to pick my son up, but I could use my breath to calm my mind so that I could help my son cope better.  Slowly my heart stopped breaking and both of my boys began to not just survive, but to thrive. My younger son has also overcome many obstacles as well- growing out of a speech and motor delays, and surfing through anxiety issues. He is equally amazing in his own way. The impact of this practice and how my boys inspire me everyday would be a whole post for another day. But as you can see, we live and extraordinary life. Every day, even if there are struggles is amazing. The only way left to go is up. The next time you think you can't, think again. If a 14 year old boy can do all this in his short life, think of what is possible in your own. Then go do it!