SpecialJanuary 30, 2013
Every so often I cry in the shower. That’s where no one can hear me, my eyes don’t get red and my face doesn’t get puffy. That’s where I can hide my tears and stand in there and let it out as long as I want to and as long as I need to. I don’t cry because I am sad. I cry because every few weeks I need to let it out.
I have no idea what I am doing.
If you live in the world of Autism Spectrum Disorders and Special Education and Special Needs you know what I mean. Let’s be clear however…. on the spectrum of all of these spectrum’s I have it easy. Our son is verbal, high functioning, social. He is in 6th grade and probably just a grade or two behind. He does not exhibit what we call in this world “behaviors”… meaning he doesn’t act out, does not hit, does not have meltdowns (he used to).
I have fought the educational system and won. I have fought the medical system, the insurance companies, the stereotypes, the bullies. And I have won. We are now at The Norman Howard School where….. well where magic is happening. It took taking one of the biggest school districts in our part of the state to court…. and in two years I am going to have to do it again. And when I do…. I will win again.
Again, my battle is easy compared to everyone else I know who lives in this world. I see the amount of fight and energy that I have to put into all of this and I am stunned at how much more other parents have to.
I cry because I don’t know what the hell I am doing.
If I had to choose this path again I would. I don’t want our son to be anyone except for who he is. He’s been my greatest teacher. He has taught me what it means to love and what it means to fear. He has taught me what it means to stand up for what you believe in.
He has taught me what it means to have faith and what it means to believe in someone so much your soul aches. I believe in him more than I believe in anything else in the world. It’s a feeling that I can’t explain or articulate. It’s just there.
I don’t have a mentor or an advocate. When I called the Advocacy Center they told me this “Sounds like you don’t need us, you do a fine job on your own.” and that was the last straw. That’s what you get from many places that are supposed to be there to help you. Long ago I gathered up records and documents and everything I had and made a decision.
I am going to run this ship and I am just going to pave the damn path.
I have collected advisors if you will. Our pediatrician. A specialist. Friends. Family. People on the spectrum. Earlier this year by fate I met one of the most amazing behavioral specialists I have ever met… someone whose clinical experience and knowledge knocks the so-called-experts clear out of the park. I work with her as a colleague but she’s lent me guidance. Team Luc is comprised of an eclectic group of people who may not even know they are on this team.
That’s how I operate in life though. I pull who I need. You get put on the team. You don’t get asked. You sometimes don’t even know. But you become my go to people.
There is no directions for how to navigate all of this. I work well with protocols. Grey is a hard area for me and it’s the exact place I have been inventing. I don’t have a clue of what I am doing. I am making it up as I go along. What I do know is there is a world full of experts who have told me that Luc will never learn, never excel in school, not have a future and won’t be independent.
Maybe you want to come watch as he tests for his green belt in Taekwondo? His Taewkondo teacher (or whatever I am supposed to call him) would completely dismiss you if you attempted to tell him what Luc can not do. And then Luc would simply show you a roundhouse kick that would stun you.
What I do know is that in our new school he’s growing and he’s learning. While he is learning long division and multiplication tables he’s created power point presentations and can give a presentation to his class without being nervous. He’s joined the ski club and is learning how to snowboard. He’s joined the cooking club and the Art Club.
He’s going to a career day in a few weeks. He talks of being a policeman, a fireman or even going into the Army.
I still cry because I don’t know what I am doing. Like I said I am one of the lucky ones, I don’t have it nearly as hard as many others do. Nonetheless I am navigating through a maze with a blindfold on. A maze where there is no right or wrong way….. because no two kids are the same. I cry because I don’t know what to do with the feelings of being lost and at the same time being found. I don’t know what to do with the feelings of fighting so much and then relaxing. I don’t know how to handle all of this so I do what I always do.
I smile. I forge ahead. I assure him that we got this…. because we do. I continue making this all up as we go along because there is no set rules and set definitions. Hard as they try to tell me how it’s going to be….. they can’t.
I don’t cry because I am sad, or because I am upset or even because I am tired. I cry … just because.
Then when I am done and the cup is empty… I smile. Because this amazing child who is now a young man is the most amazing human being I have ever known.