This has been a rough winter. And no, not because Stella stopped by and dumped tiny glaciers all over Brooklyn. And not due to anything in my life (for once).
Politically the climate is wonky. Outside the climate is wonky. And us as a people have no clue how to move forward in one cohesive unit in order to balance out either.
My break from this reality until I can figure out how to make a difference? Retreating to my microcosm and experiencing full on happiness for the first time in my life. I have been truly happy. People and art and places have made me happy. But never have they done this across the board. A friend can make me thrilled but then I could go home after that and deal with an asshole. Or I can experience writer’s block even with things moving in a steady direction (which I haven’t been experiencing writer’s block this last month, I just haven’t written to you guys [and I apologize for that]).
There are forces at work in my life that are finally coming to some sort of agreement on a baseline for my heart beat. Sure there will be times in my life my heart will beat fasting with fear or anger. Things can not be perfect all of the time. But I have spent 29 years on a roller coaster I never bought a ticket for but was willing to try out. And there were several times where I wanted to jump from the coaster, but didn’t. If I tried to ignore the ride, I would just close my eyes for extended periods of mistakes in my life and stick my fingers in my ears to drown out everyone else. And somehow the ones sitting around me would change on a loop and I never understood how relationships worked so I just kept closing my eyes.
Then Scar took a seat next to me and my perspective began to evolve. And I felt like I began to evolve. And I didn’t want to close my eyes anymore. I wanted to take control of the ride, stop it, and jump on a tea-cup because the chaos was too much for me and will serve her no purpose.
In the midst of this, I began to understand people, and love, and relationships, and self-worth, and it has finally led me to a place in my life where I can stop and breathe in the air around me, though I had to stop breathing a few times in order to get it. I feel like I can tackle basically anything thrown at me, especially where Scar is concerned. She has been improving almost daily, even with minor setbacks (expected ones, ones that provide us all with a learning experience). I can honestly say that the child from last year and the child from this one are two different people and I am so proud of her (an myself; never downplay the role you have in your child’s life, especially if you are on your game).
Scar is also on her way to preschool graduation and a successful future in kindergarten. We got through the kindergarten IEP and survived, coming away with everything we need and more consideration than the first time. I only attribute that to the fact that I am much more educated than I was the first go, it wasn’t the fault of the person I was working with. Seems to be the case that those who try to work tirelessly for educating the autistic population have fewer resources than the parents do. They are trapped in the confines of a system, a system that involves money. Parents need to go rogue. Always go rogue. Call everyone. Bother everyone. Get to know everyone. We are coming up on a year that we have left our old world behind for this one and I feel like we have been warriors and not a small family in Brooklyn, NY. And we are winning.
I have actually considered trying to get into autism advocacy so that I can educate as many people as I can on how to get what you need for your child. I keep digging, I keep learning. Eventually I will figure out how to get out there. And now I have someone to share these dreams and ideas with. Someone who is just as dedicated to assisting those like my daughter and finding ways of improving quality of life for them. He has certainly improved it for us. His name is Michael and I am fairly certain that if there ever was a knight in shining armor, it is him.
I think I finally emerged from the tunnel that I have been exhaustively searching through for the last few years. Searching because I always knew there was something more than what I was used to before. Something more true and meaningful. And what I have built and what I have seen the last two or so years has been my way of acknowledging the light at the end. And now here I am.
It is so beautiful out here.