Set me on fire..

There are few things as powerful as the fire of a special needs parent. Sometimes that fire is a burning anger, fueled by an injustice discovered. That fire produces advocacy that can go toe to toe with any giant. Sometimes that fire is a burning passion, fueled by the recognition of a potential breakthrough. Sometimes that breakthrough is a small, but significant step forward on a road of a thousand footsteps. Sometimes that breakthrough is life altering. Sometimes it reveals a path that was there all along, but only now becomes as clear as crystal.

Noah’s diagnosis lit a fire under me that eventually could no longer be contained. For years I knew I had to work with kids like my son. I was trapped in a job that I hated. I was self-destructive, in part because I knew I was on the wrong path and I had no idea how to get off of it. Eventually, after many mis-steps and failures, I found myself standing inside an elementary school, outside my comfort zone as a 30 something guy with zero experience with kids outside of my own. I was starting over from scratch as a part time para-professional. Yikes. What now? I was finally able to gain control of that burning fire and manifest it as a holy discontent.

Two years later, I am now a first year special education teacher and grad student. I’m trying my best to juggle life while beat down by the regulations of the state and stretched extremely thin by the unexpected removal of many support staff in my school. The fire dimmed..

The fire roared back so profoundly and was so all-consuming that it nearly took my breath away. I was attending a conference alongside my wife and we caught the same fire at the same time. We were listening to a presentation from St. Vincent’s Home. SVH is life changing program that helps adults with disabilities. They help navigate the cliff of ending services that exists for adults with disabilities at age 22. We were planning ahead for our 11 year old. The fire had other plans.

We had long debated the merits of staying in our current town or moving closer to SVH. We’re an hour from this amazing program. Should we uproot and move closer to resources for him as he heads towards adulthood and a looming removal of the supports that the public school currently provides? It suddenly dawned on us. We could have both. Why couldn’t our more rural area open a branch of SVH? We have a string of about 5 significant towns within a half hour that includes two relatively major universities. Our area could support such a program. Our area needs such a program. Our county is particularly in need of a program like this. Recent stats show that we have more than twice the state average of severely disabled kids. Where do these kids go when they hit 22? They certainly don’t have access to the incredible support that SVH provides. They don’t have employment training, day programs, skill training, therapeutic consultation, support groups & social activities like SVH.

The fire burned clear. I need more experience teaching. I need to complete my master’s degree and acquire my full teaching license. We need to buy our house and commit to connecting 100% with this area, rather than always having 1 foot out the door. At least then, we’ll be available and somewhat qualified to do everything we can to serve and love the young adults that the world has mostly forgotten about.

You set me on fire. Burn me with your love so bright, so that I can light that fire in others..