Why We Need a Hand
My son James is now almost twelve years old, and he was first diagnosed at 15 months. He has a Partial Trisomy on his 10th Chromosome (Partial Trisomy 10q) and a resulting Autism diagnosis that came about two years later. I have been navigating the muddy waters of health insurance, services, rights, scares, and medical teams for approximately 125 months. And let me assure you, these can be lonely months if we don't have the support we need.
When James was first diagnosed, I had NO idea what this disorder was. I couldn't understand it biologically, comprehensively, behaviorally, I didn't know a thing. After I felt my insides turn to hopeless dust, my next thought was simply, "okay, how do I help him?" We received a packet from the Unique Chromosome Disorder group, this helped. It was a description of the experiences of other families and the limited medical research from this particular disorder. It was next to nothing in terms of content, but it was all we had, and it was a help. But then it was a lonely search for where to look next.
I marched through the channels recommended to me by the one doctor who was helping me find my way. He told me to start with my Pediatrician, who would refer me to Early Intervention. They would evaluate him and start services. Then each therapist became a resource. Then each resource led to more resources, all of which were found with digging, insurance battles, and dead ends. But the more people I asked, the more people I found, and I kept myself an open book about James and his needs. I talked to everyone with whom he worked and was examined by. Every doctor sent me to another doctor. Every therapist sent me to another resource.
And I think back now to 125 months ago, and the years that followed, and I think about how I closed my eyes in prayer and hope for a place to go, just one umbrella under which I could have asked my questions; a team of people filled with parents, doctors, therapists, educators, social workers, and even people with special needs, to just have in my hand as I walked the lonely and scary and unchartered pathways of my new role as a Mom of a child with special needs.
With so much help, and so many amazing people, we created that place, that umbrella, that safe haven. Ask any question. Have any need. If Hand In Hand doesn't know, we will find out who does, and we will return to you with a response. This is the resource I wanted myself all those years ago, and this is the resource with which I empower everyone who asks. We should never have to walk these paths alone. There is no reason to, when so many of us have walked them before. Others have carved the way, done the research, banged down the doors, and sat hours on the phone on hold to find out what is available, how does it all work, where we need to go, and who needs to write the referrals. Never walk alone, you will always have a hand in yours.
~Toni-Ann Yates