It really was a simple enough plan. Ben was scheduled for a consult with the doctor on Thursday morning in Birmingham, AL and then surgery on Friday. The drive from Orlando to Birmingham should have taken 9-10 hours with breaks along the way. I had a hearty breakfast, knowing that I would be driving all day, and then went to pick up Ben and Sara. After some wrangling to get Ben out the door we were on our way north by 10:30. Smooth sailing!
Five months ago Ben got sick. Well, he was sick before that but not visibly so; it was five months ago that he wound up in the hospital with non-stop vomiting. Since then it has been multiple hospital stays, three endoscopic procedures, and months of waiting. Today we leave for Birmingham, Alabama to see a specialist. Friday Ben will have major abdominal surgery to remove part or all of his pancreas, and to transplant the islets into his liver.
I really don't have much to write about this week, except to talk about the wait. Ben has been back to school, today is his seventh consecutive school day. After being out for so long (basically from June of 2013 until January of 2014, so effectively seven full months) he is not performing well. He is physically able to make it through the day, but he steadfastly refuses to do any work. Some of that may be him being physically uncomfortable and worn out from the ongoing pancreatitis. Most of it, though, is just him being smart and cunning enough to pretend not to understand what his teachers ask of him. Tasks that he could easily complete in the classroom last spring he now pretends are insurmountable puzzles. He'll play "no habla englais" in one moment, and then when he thinks nobody is looking he will be visibly satisfied with his deception. He's not a dumb kid. But he is still miserable most of the time, with only tiny reserves of energy.
Keeping in the spirit of World Autism Awareness Month, here is another book I came across recently that I really quite enjoyed: the boy who saved my life: walking into the light with my autistic grandson
by Earle Martin. As the title suggests, the book recounts the way in which a young boy with autism became the catalyst for lifting his grandfather out of depths of depression. I expected a novel similar to the one I mentioned last week (There's A Boy In Here
) or like my own, a straightforward narrative about an autistic child and how he effects his family. I was pleasantly surprised, then, to find instead something closer to a tone poem.
The month of April has been named Autism Awareness Month, and yesterday in particular was World Autism Awareness Day. Some pretty cool things happened all around the world, particularly with the Autism Speaks Light It Up Blue
campaign. The Empire State Building in New York City was illuminated blue, as was the Sydney Opera House in Australia. I saw a fair amount of activity on both Facebook and Twitter related to autism awareness, and it was pretty nice. And weird. I mean, I'm already aware of autism. A friend of my wife, who also has two autistic sons, commented that it was "Me Awareness Day" and that just about sums up my feelings.
It's funny, I have spent the majority of the last two decades dealing with autism on a very personal level. It has quite literally circumscribed my life. Every major decision I have made since Ben was born has passed through the filter of "how will this effect my son?" I have done my level best to be a good father, and I guess if you ask the people around me they will tell you that I have been successful. But the weird thing is, a part of me feels like a complete failure because I have not gone all Lorenzo's Oil
on autism and spent all of my waking hours searching for a cure. My wife once commented that she thought it was kind of odd that I wasn't more involved with autism support groups or online communities and such. The truth is, I just don't have the energy. And because of that, I feel guilty. That probably sounds crazy, but there it is.
It seems almost impossible to imagine, but Ben turned eighteen this past December. For any family this is an important milestone in the journey to adulthood. For families with special needs children, however, this is a particularly thorny milestone. Once your child turns eighteen they become an adult in the eyes of the law, with all of the rights and privileges associated. I am aware of cases where higher functioning young autistic adults have been coerced into doing things like purchasing a brand new car or signing contracts and leases, often by unscrupulous salesmen who are fully aware that the person they are speaking to is clearly not competent. The more common issue, however, is that medical professionals are no longer required to discuss your child's healthcare with you -- in fact they may be prohibited from doing so by privacy laws. This is where Guardianship comes in.
Any parent knows that having children means that you will spend a certain amount of time dealing frequently with all of the various liquids and solids that will erupt from your child's body, often without warning. You know it is coming, you prepare yourself, and you spend the first couple of years handling it as gracefully as possible until you can get your little bundle of joy potty trained. It's an oogy couple of years, that gets offset by all of the magical milestones (and truth be told, also gets minimized by your near-perpetual sleep deprivation). So when Ben was born in 1993 I was completely aware that I would be spending the mid-90's dealing with a reasonable amount of poop. I never imagined that eighteen years later my son's poop would still be dominating my life.
The first half of 2012 was very trying for Ben from a gastrointestinal perspective. I’ll will try not to be too explicit here or revel in the scatological details, just suffice to say that from somewhere in mid-2011 up until last May my son had an ongoing toileting issue. It was extremely unpleasant for everyone involved, and was a major regression from previous behavior. It hand taken us up until 2006, when Ben was thirteen years old, to finally get him out of diapers. Then after half a decade of general peace and happiness in the bathroom arena all of a sudden Ben seemed to be making a strong and concerted argument for going back to diapers. This was not something we even wanted to begin to consider.
Before I start the actual story, I need to specifically thank three people who made this all happen. Carl Bond is the Area Manager for Entertainment at Epcot, and it was his initial involvement that got the ball rolling. Without his help none of this would have ever happened. Scott Cook is Carl's counterpart at the Magic Kingdom, and he jumped into action as soon as Carl contacted him. Finally, David Storm is one of the lead Dream Team members at the Magic Kingdom. He really took this story to heart, and created an event that so far exceeded our wildest imagination that I cannot even begin to thank him enough. All three of them will be getting personal letters of thanks from us this week, both directly and to their supervisors so that they can get the recognition they deserve. Yesterday was simply an amazing day all around, a piece of magic that neither Ben nor the rest of our family will ever forget.
Buckle up, folks, this is going to be a long one.
Last weekend between Saturday and Sunday, Ben rode Snow White's Scary Adventures 33 times - bringing his running total to 987 and effectively ensuring that this weekend would see his 1000th ride. Everybody was very excited about this but Ben, who probably thinks in binary and doesn't see any particular value in the number 1111101000.