Don’t give up-
The challenge to any family with a special needs child is to operate within a society that is structured for normalcy. Children with special needs often don’t come with a handy instruction book or on/off switch that will ensure they are well behaved and subdued as to not disturb the general public. The looks you shoot us wont help.

As Maxs dad I struggle with the idea of inclusion. Inclusion isn’t easy, it’s not comfortable and is often painful and emotionally draining. It’s not that I don’t want to spend time with Max, but if I’m running to the store often it’s just easier to go and leave Max with his mom or grandma or grandpa. So the question to be asked is, does Max want to go to the store? I am pretty sure Max couldnt care less about the specific location or what store it is, but I know he wants to go. He desires to be included, to go places that his
Dad goes and to go the places his sister gets to go. That’s when the fight for inclusion gets personal. Am I willing to spend the extra 10 or 15 minutes it will take to load him up and get all his gear in place. At first glance well of course I am, but day after day, week after week it gets a little more cloudy. Sometimes it’s late, it’s cold, it’s raining, snowing or too hot. All of which at times are concerns, but they are all easy excuses. Really that’s when it gets the most difficult to fight for inclusion is when the excuses are so readily available, friends and family are always enabling and really who’s going to call me on it.

Stores have handicap buttons to open the automated doors, they have handicap accessible bathrooms and elevators. Restaurants have a table or two for a wheel chair to roll up to. All this is good, but none of that helps with the frustration of trying to fit a wheel chair in between isles or table or clothes racks that are far too narrow. The difficulty of employees that are happy to help but much happier to get out of situation. None of it helps when other patrons and shoppers send looks of frustration that their meal is being impacted or the comments asking to ‘get control of your child’. This is the struggle every special needs parent faces, not once or on a rare occasion but every time they leave the house at lease in some variation or another.

I am writing this not for me but for countless parents that have chosen to stay home. The parents that gave up trying because the frustration just isn’t worth it. I can only offer encouragement that it is worth it, our kids they need to be taken out, they need to see the world as well as to be seen by the world. This is our tribe, a tribe of parents that fight through the snow, the rain, and every potential hurdle. If have to climb 5 steps or 50 steps with my son and his 60 pound wheelchair I will but I will not let him be kept from the top of those stairs. Personally I continue to fight to take Max every where any 4 year old boy would go.

Scott

Impact and Honor

What will you do with it? What will you do with the lessons and experiences? What will you do with the seconds and days allotted? Will you own the gifts you have received and live a life worthy of those gifts?

I was discussing my story, more specifically Maxs story and my role in it. As I attempted to described what drives me the answer came to me in a different way. It came in the blink of an eye, I do it to honor Max. I do it to respect the gift of the last 4 years. I do it because the idea of doing nothing is unimaginable.

I think we all are blessed with relationships that change us and that shape us. Friends, parents, grandparents these are the people that we try and honor with how we carry out our lives. I realized in a moment that I am seeking to honor him with my life. In how I help others, in how I stand up for Max and countless others that don’t have a voice. I honor him by not being afraid to take steps without a safety net. I honor him by living a life worthy of the gift I’ve received.

Scott
“living in Max optimism”

The house was dark except for a small lamp giving a shadowy glow over no more then half of the room. The house was free of any ambient noise, free from the volume of daily life.

As I sat gently rocking back in forth, I found I was more present in a singular moment then I had been in a long time. It’s strange days and weeks can pass by and I can honestly say I’m not sure if I was present for any of it. I was of course present in the sense that we are always physically somewhere, but not present in the cognizant sense.

Minutes before Max had cried out the way he often does. He was in pain, not the rush to the hospital pain but pain none the less. The type of pain that can only be comforted by a mom or a dad.

As I held my son in my arms gently rocking it was with an intense presence. I was not thinking about the future or the past, about joy or pain. It was if I was identifying with each second as it passed by. The minutes seemed never ending. It was as if I had unknowingly tapped into a new area of my psyche and emotions. You often hear chefs talk about tasting the individual components of a dish as if they were never mixed at all. They gush about the joy of tasting each ingredient separately on their refined palate, rather then the way most people taste food as the end result of the mixed ingredients. I had become a chef of time, every second seemed to be exploding with life. It wasn’t long before I laid Max back down in bed, the awareness and presence was gone and time began once again moving in its blended form.