Diagnosis, Shmiagnosis.

Today, Melissa and I enjoyed a conference in Denver put on by CARD, or The Center for Autism and Related Disorders (www.centerforautism.com). There, one of the speakers was Joe Mohs (joeslivingproof.com), a young man who is considered to be recovered from autism. He showed a few videos from his childhood, proof that he was indeed autistic. He told his story, and answered many questions at the end. It was interesting. As I was observing him, I found myself looking for signs that I'm so used to with Brody. Discomfort with eye contact, unusual speech patterns or tones, even things like posture or how he rested his hands on the podium. Nothing odd, he seemed to be quite typical. Very nice to see, encouraging... and somehow discouraging at the same time. Let me explain.

The program he went through is called ABA, or "Applied Behavioral Analysis". I'm not going to take up your time explaining what ABA is exactly (that's why I provided the link!). Suffice it to say that it can be a very intensive program, depending on the needs of the individual. 40 hours a week of one-on-one therapy for months, even years. For Joe, it worked. He started at about 3-1/2 years old, and by the time he was ready for school, he was mainstreamed. They didn't even have to tell the teachers that he had previously been autistic. Judging from the videos we watched, he was easily on the same neurological level as our son, maybe even worse. So it is impressive!

The discouraging part about ABA is that it's crazy-unrealistic-expensive without coverage. They interviewed a few parents who had seen great success with ABA, and this is probably a snap judgement, but none of them appeared to be middle or lower class. Recently, things with insurance companies have changed, and it seems possible that you could get it covered, but it would still be difficult. I'm sure there are grants available as well. We may look into it.

Which leads me to the importance, or rather, the unimportance of the diagnosis. We decided to pursue the diagnosis in 2008 (as I mentioned previously), and it was a mixed bag. In my opinion, the best thing about it was an awesome day at Disneyland that we wouldn't have had otherwise. But there is this idea out there that you can be cured, or recovered, from autism. If we wanted to, we could have Brody evaluated again some day, and it is possible that they might change his diagnosis.

Some people are offended by the idea of being cured from autism. I'm not, but I can see the reasons to feel this way. After this much time, we have come to appreciate the brilliance Brody possesses in his unique mind. We recently discovered that he has something called "perfect pitch" (more on this in a moment). He has such a fascinating perspective on things. He is a wonderful reader, he's great at math and spelling. He has a great sense of humor, even if telling a joke or recognizing sarcasm isn't his thing yet. These are all things I would have to assume would be diminished in someway if he were more of a typical kid. So, I think we learn to embrace what makes him special, and the thought of him being any other way is really kind of foreign. Who cares what some doctor says? We love our kids, and every single one of them deserves to feel appreciated for who they are.

Brody recently was taking a group music therapy class, and the therapist noticed that Brody has a knack for recognizing notes. She suggested we meet with a CSU music professor, and she confirmed that Brody does have perfect pitch. He can recognize or even sing any note you tell him to. He can tell you what key a scale is in. He can recognize two notes played at the same time. He can hear a few notes, and sit down at a piano and play the same notes. He is already reading sheet music. And this is with probably less than 8 hours of one-on-one lessons.

A couple of months ago, even before we got him started on one-on-one lessons, he told Melissa that our Food Saver played 2 different notes on low, and 2 notes on high. Now, I would never say that I am a musician- but I know how to play several instruments a little, and I can't even fathom the raw ability he has. So, we hope we've found something that will be a way for him to express himself artistically, and gain some of that all-important self-esteem. We just bought an upright piano, something I never thought we would buy. Ah, the things we do for our children!

To update you on where Brody's progress is at: He is currently in 2nd grade, with minimal assistance throughout the day. He is advanced in spelling and math, but behind on comprehension and anything related to abstract thinking. His biggest deficit is still social interactions. He does have friends at school, the girls especially seem to enjoy his company- although I feel a little concern that he is not really viewed by them as a peer. He loves to play video games, we find that is his favorite reward and motivator, along with the occasional treat. He is currently getting speech, occupational, and music therapy. It is obvious that he continues to have issues with recognizing where his body is in relation to everything around him. He has trouble sitting still. He has improved greatly with writing and art, so it is encouraging to see his fine motor skills making progress. He is still gluten-free, but we occasionally allow other foods that he used to be restricted from. His gastrointestinal health is the biggest of our medical concerns (specifically constipation), although he does require less supplements than he used to.

Probably the most helpful thing I heard at the conference today was something I've already talked about here, but I have not applied it completely. These kids are capable of so much. You must keep your expectations high. We partially applied this in the sense that we would not allow him to use inappropriate behaviors for any reason (something I learned from Temple Grandin). But you have to look at the positive ways that you keep up your expectations. It's easy to say, "He can't interact properly with other people because he is autistic." But the truth is, he should be expected to try, we just have to give him the tools, and put him in the right situations to accomplish what we expect of him. You must expect a lot out of yourself as well.

There are some online resources for do-it-yourself ABA therapy, and we will most likely pursue that avenue. We still struggle with the school system- it seems you must be the squeaky wheel to get anything truly helpful accomplished. Home schooling seems to be in our future, we just do not know how soon. Feel free to post any questions if you are curious about specific parts of his progress.

Brody continues to be the greatest part of my life, and even though things are difficult at times, we always have fun together, and I would never want him to be any other way. I just want to give him a chance to one day be a happy adult, and even though it is a lot of work, stress, and anxiety, it is worth every second. ;)