When I stopped and considered the subject of this article, one obvious and repeating word came to mind: Chaos. It was not difficult for me to recall the emotions and overwhelming feelings of disorder and chaos in our world when we began seeking help for our first toddler, Megan. “How will we pay for treatment? What is the best kind of doctor to take her to? When will we have time for therapy? Does our insurance cover this? Will our child live a normal life? Can our daughter still attend public school? What will our family say? I’ve had three doctors tell me three different things – who do I trust??” AAAARRRRRGGHH. Many questions, fewer answers it seemed to me. Chaos at home. Chaos at the doctor. So it’s OK to embrace it, to a degree, and just breathe through the moments as they come and pass.
One surprise we did not anticipate was the challenge at the pediatrician level. Get pediatrician buy-in from the beginning. It is incorrect to assume your pediatrician is well-versed in the recognition and treatment of ASD children. Regardless, the pediatrician’s office is often the front line for ASD diagnoses. Even if your doctor is able to spot and help diagnose autism in your toddler many times he/she will not know where to send you next. We were very much left alone to figure out next steps and where to go from here. So please, make a point to get as much support and buy in from the pediatrician’s office as possible because their role is so significant in terms of ongoing care, support, and clinical coordination.
Another shocking revelation to us when Megan was first being diagnosed as a toddler was the glaring lack of a Plan Of Care (POC). Everything about our journey seemed entirely d-i-s-j-o-i-n-t-e-d and frag/ment/ed; no one seemed to be in charge of coordinating OUR care, nor OUR next step, nor OUR long-term direction. We had no apparent nor readily available “roadmap” for this. I learned autism was not like treating other clinical conditions where long-beaten paths of treatment and coordination have been tread, such as cancer, diabetes, broken limbs. Trying to figure out what to do next and where to take Megan was thoroughly exhausting, a constant effort of getting one office to talk to another to talk to another and just HELP MY CHILD GET BETTER!
Out of this frustrating experience grew my dream to create PediaPlex, an all-inclusive diagnostic and therapeutic clinic where ASD patients AND families can engage a collaborative and comprehensive treatment environment unlike any other. If you are fresh in your journey with autism or perhaps just seeking a diagnosis for your young child my hope is you will lean on my early experiences to help you adjust and even on some days, help you brace. Next month I’ll share a few insights regarding navigating the water of ASD with pre-teens.
Thank you so much for being part of our family!
Founder of PediaPlex