Wednesday, October 26, 2011

Waking up to an Asperger’s World

Readers of this space will know that I’ve always guarded the privacy of my family. They will also know that I recently went through a rather difficult ordeal working to obtain services for my child at their public school here in Northern Virginia. While I will continue to guard the privacy of my family, I think it is safe to reveal something that I and my family have known for some time now, though the clinical diagnosis is more recent than the one of the heart. I have a child with Asperger’s Syndrome. I’m fine with it. I love my kids. That said, I hope you will excuse my occasionally ‘more awkward than usual’ prose as I figure out how to navigate the line between productive and unproductive sharing. I thank all of you for your comments on the last post, most of which were sent directly to me. Your thoughtfulness is appreciated. Moving on…

The more I read about Asperger’s Syndrome, the more I find myself disappointed that my dad is not here. Since he’s been dead over 21 years, there have been a lot of moments along the way where I have been disappointed that he’s not around.

My dad had a Master’s in Education from SHU, and I followed him so diligently that I got one from there too. He, however, dedicated his career and focused his attention on adapting the principles of physical education for kids with special needs. He was never happier than when he was teaching the most challenged students, both physically and developmentally, in his district. When he was developing his program back in the 1970’s and ‘80’s, there was debate as to whether it was prudent or appropriate to attempt to offer PE to special needs students. Dad felt that it was not only appropriate, but vital and necessary for the health and development of all kids, regardless of disability or challenge. I feel that history has proven him right on this point.

Dad didn’t talk about school all that much with me, which saddens me a bit in retrospect. I wish he had been more emotive about the great passion of his career and about his frustrations, which would so later perfectly mirror my own frustrations in my own career: I became disillusioned when the people in power forgot about reaching kids, just as he did. But, I was a kid then, and dad was always one to separate home and work very clearly. I wish I hadn’t had to hear stories about his work almost exclusively from other people, but I suppose I am grateful that I heard them at all. He was good at what he did and worked with each child individually to find a way to push them and reach measured goals. He taught them to enjoy sports and exercise and to accomplish things that most people not only said they could not do, but things they would never have dreamed possible for them. I’ve often told the story of the blind girl that he trained to run the 50-yard dash-something I assure you she was exempted from in her IEP. She wanted to do it and he wanted her to as well-and so she did. My favorite part of that story was always how they got started, which involved all the other kids in the class spreading out and lining the lane on the track to help steer her straight if she drifted. Heck of a teachable moment for an entire class. I wasn’t there and I get chills telling the story-I can’t imagine what it must have been like to be part of that moment.

Dad was inducted into the Hall of Fame for his North Jersey school district. Posthumously, of course, but I remember it as a nice event. It was an honor he would likely have rolled his eyes at privately, yet accepted with grace and humility. I know I was very proud that day and somewhat inspired, already a few years into my own educational career at the time.

Outside of all that, though, I do find that I mourn, just a little the fact that he’s not here to interact with my children, one of whom was recently diagnosed with Asperger’s Syndrome. There have been a lot of moments that I’ve felt like Dad and that child in particular would have gotten along really well. Heck, there are times, now that I know more about Asperger’s that I wonder if my dad may have been on the spectrum himself. Not sure it’s that far off to say so. As a grandparent who might have been uniquely positioned to be of help to us now, to provide assistance and help from a career spent working with challenging kids and his own innate talent, I miss him. I regret that dad can’t help us, and I imagine he would have done so enthusiastically, as it is right up his alley. He was not a perfect parent, just as I am not. There were times that I felt he could be quite closed off and distant when I was a kid. That said, I know that he would have stepped up for his grandchildren and I wonder at times what he might have said about them.

As that voice remains silent as it has since 1990, I and mine will do as we’ve always done. We will do our best and make it work. The family and friends who are in the trenches with us now are invaluable and life would be far more difficult without them.

I have learned a lot recently and have found some strategies that started helping immediately. The “When/then” thing I read about sounds so simple: Presenting requests and orders as “When you do this, then this will happen,” etc. It seems so simple, but once I started using it, the results were dramatic. I’ve used it to explain things as well. Just yesterday they were on the computer and my Asperger’s child was getting a little pushy while a sibling was having their turn. I said, “When it’s someone else’s turn at the computer, then they get to choose what they do.” The reply? “Oh, that’s right, I forgot,” and everything settled down and they had a delightful time. I almost fell out of my chair, as in the past, such moments would lead to a meltdown or at the very least an occurrence of the “Boo-boo face” as I like to call it. This time, there was understanding and acceptance and we all moved on.

Another tactic I read about that I have had success with is delineating choices very clearly. I can’t ask, “What do you want for dinner?” That’s too broad a question and simply can’t be answered by my Asperger’s kid in a way that’s effective. So, I give three choices. We haven’t argued about food in days.

One of my other favorites is what I’m calling the “Five second blackout.” If something I’ve asked to be done isn’t getting done, or if something minor has occurred that isn’t really helpful, I’ll say “OK, I don’t like what’s just happened, and I’m going to close my eyes for five seconds, and I’ll bet that when I open them, you’ll have figured out how to make it right.” And so I close my eyes and count to five. And it works. We’ve had a really good series of days.

We are admittedly only at the beginning of this journey and, as great as these tactics might be, they may not work forever. Heck, they may not work when they all get home from school today. But it’s clearly shown me that I can adapt and change and that there are strategies that can help us all navigate the world around us in a more comforting and peaceful way. While I do believe my dad would have had some good ideas and I would very much welcome his insight, I know that there are a lot of parents and children dealing with the very same things our family is facing. The wife and I will do our best and learn everything we can learn from other parents and the copious amount of books and websites dedicated to the topic of Asperger’s and Autism Spectrum disorders.

There will be great days and there will be rough days, and we will face them all as a family. Whatever comes we will manage it, and while I wish I could tell you that I will always do so with grace and overwhelming calm, I think that’s unrealistic. But we’ll face it together.

And I’m again reminded that I have to try and stay healthy as I’d prefer to not have my kids forced to have to write drivel like this about their own lives someday. That said, I am learning to navigate a whole new world and a whole new perspective. And I’m embracing my role as stay-at-home dad with a renewed passion. My other aspirations may return at some point in the future, but for now, nothing matters more than my children and my wife and the life we are making together. There’s a lot to learn, but I’ll be damned if I’m going to be outworked on this one. And I love my family. That helps a lot, too.

Wednesday, October 19, 2011

I can't do it all: why I'm no longer an aspiring novelist

I can’t do it all. Of course, no one can, but I can really only speak for myself right now. My family and I have been through a pretty challenging time of late in dealing with a medical/learning issue with one of the children. I’m not going to get into specifics here, as it’s personal to my child and not appropriate for this space. Feel free to ask me privately if you wish. In the interest of understanding, we are seeking an IEP for one of them, and the process of getting to this point has been at times exceedingly difficult, including a very difficult meeting yesterday at the school. But we are where we need to be at the moment.

In preparing for the meeting yesterday, I called on every bit of experience and knowledge I have from my former career in education. I spent hours doing research and practiced many of the things I was to say out loud and in my head in the days leading up. It was a difficult meeting but the school agreed to begin the process with us, and it would seem that our hard work as a family, through copious amounts of testing and medical appointments, occupational therapy, and all of my preparation for the actual meeting, had paid off.

And it did. But it almost didn’t. It was a fight, tooth and nail, the whole way. I almost failed, and that would have really been unfortunate. So, the extra time I put into preparation was worth it, especially the three hours I spent in the library yesterday morning researching and further organizing my materials. It was time well spent. When I entered the meeting, I felt ready. I was ready. When it was over and I left, I felt like I had been in a 90 minute fistfight. I most certainly got my dander up and fought like hell for my kid. I would do nothing less for my family.

But it almost wasn’t enough. Fortunately, at this point it was, but this is by no means the last meeting of this kind we will have. There will be more and some of them have the potential to be contentious as well. I am grateful to the school for the support they have shown and hope it continues. But I almost wasn’t good enough.

And that leads me to a real reflection and accounting of my life as it is right now. I am a full time parent and caretaker of our home and family. I am now also moving into the role of full-time advocate for the specialized needs of one of my children. Truth be told, one of the other ones may end up needing the same level of advocacy in the coming years, but thinking about that hurts my head right now. So, between full-time parenting and housekeeping and advocacy, and trying to exercise and take care of myself so I’m around to advocate and care for them, I’m realizing that something has to give. And that will be my aspirations to become a published writer.

I imagine no great gnashing of teeth, but it’s a small loss for me nonetheless. While it has long been a dream of mine to write a good novel and share it with the world, and to be interviewed by Terry Gross on NPR, and so forth, I think it’s time to shelve that dream. Maybe I’ll write for fun on occasion, but I think the time has come for me to abandon this aspiration, of acting like a working writer, and realize that my talents and abilities are needed on other things. My attention needs to be on my family. If I had spent yesterday morning hammering out the rough draft of chapter two, I would have failed my child. I would not have been ready. Fortunately, my head and heart were focused.

Being a good father has long been my greatest aspiration. I’m not exactly where I thought I would be at this point in my life, but I’m in a good place. Perhaps I’ll get back to trying to write novels when they are older. But I simply can’t do it and meet the needs of my family and of my own health. There aren’t enough hours and something has to give.

I think I’ll always write and in turn, perhaps putting the fiction away may open me up to write in this space more again. Perhaps that’s a good thing, I don’t know. Not sure it’s all that important right now, but we will see. In the end, my aspirations were mine and they are mine to put aside, so I’m going to stop pretending I’m a writer waiting to happen. Perhaps someday, but not today. Today, I’m going to be a Dad who gets things done and cares for my family.

And perhaps I’ll get back to the gym too. I’m going to need to have my game face on for the foreseeable future.