Jakobs Journal

February 15, 2011…More Than Hope…


We’re getting into that time of year where I become a sappy mess. I cry, I love people, I get possessive and protective and I feel like such a part of a community that I’m almost overwhelmed with emotion. Which is big for me since I have always done everything in my power to avoid heavy emotion.

But when it comes to Jakob, other Autism families (especially my Moms) and everyone who loves, accepts and understands our kids, I can’t help it.

Here is one of the many blessings that Jakob’s diagnosis has given me…friendships and a feeling of unity that I know I never would have experienced without Autism being in our lives.

And I’ve been experiencing it on the “light” side for the past few years. When we began our Son-Rise Program, we began doing something so drastically different than the mainstream Autism community, I’m not sure if most of my peeps knew what to do with me. I was weird…even for weird people. I became a bit of an outcast amongst the already outcast. At least that’s how I felt. May or may not have been true but it was certainly my perception. And it was all good. Each of us has our own journey to take. I realize that now.

But I never stopped loving this Cincinnati Autism Community and wanting the best for everyone in it. I still want that so passionately that I’ve spent the better part of this afternoon sobbing like a baby. I’m exhausted from it.

Remember the kid who was the manager for his high school basketball team? The kid with Autism whose coach let him dress for one game? He played for 4 minutes and scored 20 points? It was all caught on tape and became a national story? His name was Jason McElwain and that was 5 years ago.

Jakob and I were one year into our Autism diagnosis at the time. I was highly medicated (prescription and otherwise), his father and I were separating and I was terrified for so many reasons. But this kid, his 4 minutes, 20 points and the world’s reaction to him was enough to startle me out of my self-induced coma. This kid rocked me.

When the word on the street was “Autism is a lifelong disability with no hope of recovery” and “there’s no known treatment” and “this may be as functional as he ever gets”, that kid on the basketball court gave us all a glimmer of hope.

And now as I watch that footage again from the game, I still think his 20 points are amazing. But what rocks me 5 years later is all the people surrounding him. From the coach who gave him the chance, to the players who passed him the ball, to the students who were cheering in the stands to the community who picked him up and carried him around the gym on their shoulders. Wow. I wanna live there. I want Jakob to be surrounded by the people in that town. That’s the world I want him to know.

Five years later, I know that’s what it’s gonna take for us to connect with our kids . We have to change. We have to be like the people in that video. That’s why our kids are here. They’re here to teach us. Not the other way around. They’re not broken, we are.

We’ve forgotten kindness, understanding, patience and unconditional love. And once we get it, once we remember what it’s like to live that way, then they’ll no longer have the need to be soooo different and they’ll reunite with us.

It’s time for us to wake up. This small town in New York did. Now five years later, here’s where they are. There is so much more to this story than just hope…