Cards and comic books

A short while ago Max came home from school with a pack of baseball cards that he and my dad had picked up from a local card shop on their way home. It was a grab bag of different cards from the early 90’s, as I scanned through them many I had when I was a kid. Max had been learning about baseball in school that very month and was very excited about being able to look through the cards with me. Seeing Maxs excitement Brandy said that would be a great thing for he and I to do together, we could collect cards. Max loved that idea. Over the next 24-48 hours I however did not share the excitement. Within 2 days I had went out and purchased some comic books because I felt that was a better use of our time together. A comic book can be read and well it’s only so much fun to read the back of a baseball card. I worked to sell the idea to both Max and Brandy, describing how it would work and how we could collect them.

What I missed was everything important about the entire interaction. In my task oriented nature I had to justify our time. I had to see a beginning and an end. It’s as if the thought of doing something without a start point or an end point was foreign to me. I missed the very heart of the matter.

I found myself questioning my actions, why couldn’t I let Maxs joy be enough to guide me. If Max is excited about collecting cards with his dad why couldn’t I be excited about collecting cards with him?

It seemed that I again found myself consumed with buying into the idea that what you’re doing even matters at all. All Gracie and Max want is me, not what I give them or the things that surround or frame our time together. As I have come to realize how much Max seems to like baseball, I realize my errors in being so caught up in being task oriented. As parents we can spend days, weeks and months doing things but failing to redeem the time missing the heart of the matter completely.

I originally posted this in 2011, I am reposting in honor for all those without a voice.

The short bus

I am the father of a special needs child, that rides a special needs bus, and goes to a special needs school.

The special needs bus is a bus filled with hope, filled with redesigned dreams. As a parent of a special needs child that bus represents life, it represents a struggle that encompasses every hour of every day.

The special needs bus is filled with kids that have faced and beaten odds that most people will never have to think about let alone face. Kids that were never supposed to make it, that had been counted out.

The parents that walk or wheel their kids to that bus are parents that have walked the darkest halls and been deep in the belly of hopelessness. I am inspired by the parents I’ve met that for decades have lived the life of a special needs parent. The lack of understanding, the countless looks and the stares.

The thing about being a parent of a special needs child is that it’s tough to keep your shoes clean, from the tears of pain, the tears of joy, the sanitizer that spills from the countless hospital rooms, and the dust that is kicked up while walking your son or daughter down to the special needs bus.

Scott what do you think about it?

Recently I found my Facebook page overtaken by post and reposts about a family that has a child with autism and the horrific experience they had at a local salon/spa. The recounting of the story has invoked an entire spectrum of emotion. The most recent number I had heard was that the story had been shared over 26,000 times and pages have been started to boycott the business.

As someone squarely in the middle of the world of having a child with special needs some folks have inquired about where I land on the situation? I will say as I read about the events as they unfolded I was both broken hearted and angry. I know how painful it is to find yourself in the midst of a world that few really understand and that some could care less about understanding.

I don’t know the owner of the salon nor do I know the family that was impacted, and in no way want to minimize what happened. However the situation is one that is much common then it seems the general public seems to realize. The only difference is that no one was there to write about it, the families at time feeling too embarrassed to even recount the story and just want to forget that it happened. The thing I believe that has sparked such outrage is the very public arena this all took place in. I know thousands of people that I’m sure have both made scathing comments about the owner and taken the moral stand that they would never do something so outrageous. Yet to a family it’s not always the grand public situations that cut the deepest. Often time it’s the sideways glances, the stares. It’s the eye rolls and huffs. It’s the look of frustration on the faces of passengers sitting on a bus, a tram or some other mode of transportation as a wheel chair is being loaded. Having to ask someone to please move in order to navigate a wheel chair in a crowded restaurant and the over exaggerated motions that follow. Know this the heartbreak for a parent isn’t just in the big things. I don’t need to have someone yell at me to be disgusted by society. At the same time I don’t intend to vilify anyone, so much of this is because of a significant lack of education and a lack of compassion. On any given day many people will use the term ‘retard’ or ‘retarded’ as a normal part of their vocabulary. The belief that it’s such a common phrase that no one would be offended or hurt by it anymore. The mindset seemingly being ‘Why should I have to change the way I talk so I don’t hurt someone’s feelings… I wasn’t talking about anyone specifically.’ Its commonplace in comedic routines for someone to play the role of societies stereotype of a person with mental disabilities, we laugh at these are actors and comedians… because well they aren’t real people.

The story circulating broke my heart, but it didn’t surprise me. The outrage is well intentioned, but I wonder if it ever moves beyond this point of intense attack on one spa owner. Will any of the 26,000 people who have shared be more compassionate next time they are in a store or a restaurant? In a month or two with the situation has cooled, and the posts are no longer spreading like wildfire will anyone still be concerned about the rights and the treatment of the families in the special needs community. The family impacted will never be able to forget this incident, my concern is that most everyone that has spread the story and signed up for the boycott will.

Sb

The moments when I’m acutely aware of my own failures, are the worse. When I feel like I’ve become a fraud, fearing that I’m moments away from being exposed.

I question who I’ve become as a father, I question my capacity to adapt. The road has changed, the pedestrian sterile path is gone, replaced by a grinding rarely traveled path. No wider then needed, the fullness of the forest closes in on those not strong enough to carry on.

It’s not my ability to physically proceed but my soulish desire to go back. I fear I’m not strong enough mentally and emotionally to continue the journey. Some days the light cuts through shining the most amazing light, others the clouds seem to create a haze so thick its virtually impassable. All I can do is sit and wait, providing just enough time for my mind to twist and turn. Everything comes into question.

I know I’ve got no choice but to carry on. One proverbial step in front of the other. Ignoring the selfishness within, trying desperately to hold on to the joy of the journey.