I’m standing here in my backyard, phone in hand, scrolling Facebook and clicking ‘like’ on anything that brings a spark of happy to me. Anything to distract me from my racing emotions; fear, confusion, anger. I’m standing here while my brain is pacing and I’m waiting. I’m just waiting here, in my backyard for the day to end.
It’s been similar to the tale of the turtle and the rabbit. More of a turtle story and not so much of a race but… It feels like that story. We are the rabbit, the kids and I. The government, is the turtle. I want help now. Yesterday! It’s not fair that my son, a boy with talent, wit, charm, sarcasm and intelligence, isn’t thriving at the age of 20. It isn’t fair that this sweet boy, whom always put others before himself, who was always concerned with society and the wrongs being committed against people, is alone. He’s alone in his mind. A place that has insulted him, talked down to him and lead him astray. For the most part, my boy lives in his head. His facial expressions and body language speak much louder than any words. I am so mad. Furious even. He has been regressing. He doesn’t talk much these days. It breaks my heart to say that. In fact, to be brutally honest, learning to accept and understand my child and his differences, accepting that he is labeled disabled and will most likely need care and supervision for life, tears at my heart strings in ways I’ve never felt, I never imagined I could feel so much emotional pain.
Despite his recent regressions, we have found more answers. A new diagnosis added recently, has given insight into what is going on. “Hyperkinetic Movement Disorder” or “Stereotypy” explains a lifetime of ‘jumping’, ‘clapping’, ‘tapping’. The restless legs. Wikipedia describes it as, “a repetitive or ritualistic movement, posture, or utterance.” Also associated with “stimming” in Autism Spectrum Disorder.
We’ve met two great doctors here in Fresno. The first, Dr. Matthew House, got us off to a great start. After talking with Jake and I, going over his history, he concluded this was Autism with perhaps another underlying condition that was either contributing or just a symptom of the Autism.
Dr. House suggested we do a full set of evaluations and directed us to Alliant University, Fresno. After 15 hours and three weeks, we are still awaiting those results. It suddenly became critical to obtain Jakes pediatric records to show the symptoms he presented with as a child in order to complete the “puzzle”. This fact, that his baby records have become so crucial, has lead me to understand a lot more about what happened in Dallas and how we were lead down a very dangerous path, but I digress, more on that later. Obtaining those records has been very difficult because of his age. Also because we moved around so much. Having to track down records from three different pediatricians hasn’t made it any easier. We were able to get his records from TX and I have an appointment set with House next week to go over them and finally close this chapter. A chapter that should have been titled “One”.
The next chapter has us moving again. Hopefully sooner than later. Don’t get me wrong, I’ve found the beauty in Fresno. It’s not easy to see at first and it took me a while but it’s here. Mostly in the people. The few rare angels that have been placed in my path to guide us and welcome us; to ease my worry about the gang statistics and overwhelmingly awful air quality that fills my lungs with the same toxins I recently fought to rid myself of by giving up my beloved Marlboro lights. I’d rather take the cigarette thanks.
I have our sails set for Ventura county. I’ve recently had the opportunity to talk with and receive advice from a wonderfully nice lady with “Autism Ventura”. They have a community of resources and services. In particular, social gatherings and planned events for young adults on the spectrum. He will have the opportunity to make friends and find common interests with his peers. I also learned, the community colleges are already equipped with the necessary services to accommodate those on the spectrum. Something we never had in Texas. He will have a life again. This amazing man that I call son, will finally have a real chance. A real, true shot at making a happy life for himself.
Regarding the turtle, aka government. It’s being talked about and it’s always been on my agenda for the future. We, other spectrum parents, are going to do something about this. Start something in the Dallas area and soon. For a state that leads the way in so many areas, to be falling behind so critically in this area, something needs to change and it needs to change now. It’s just a dream right now and all we have is that, so that is where we will start.
Thanks for reading.
Stay tuned, it’s about to get good. 😉
