I sat with her, desperate for information and scared of what she might say.
It was two weeks before my appointment with the developmental pediatrician. Two weeks before I would hear the words ‘Autism Spectrum Disorder’ applied to my son. Two weeks before our lives changed.
I had asked her to meet me for coffee. We had never really spent time together – we knew each other through a school program. But she knew the doctor we were seeing. She had a child with autism. She seemed to have it all figured out.
We talked for hours. She graciously shared specifics. What her days looked like. How much money can be spent on all the things for perseverations and therapies. The exhaustion. The medications. The constant nagging fear of the future, of life beyond childhood, of what happens when mom and dad aren’t around.
The time I spent with this mom was one of the greatest gifts I have ever been given.
But at the time, I didn’t realize it. I didn’t know.
We didn’t even have a diagnosis yet, much less an understanding of what our future held.
No instead, when I got home and my husband asked me how it went, I said, “I cannot believe how much time they spend in doctors’ offices and with therapists. Their entire week is filled with one appointment or another. I am sure we won’t have to do all that.“
I was wrong.
We do all that and more.
The sheer amount of time and energy spent on dealing with various medical professionals was what impressed me most about that conversation (at least initially). For some reason, that piece of of her life was what stayed with me.
How could one mom spend so much time dealing with so many medical professionals?
Three years, four diagnoses, and eleven doctors/therapists later, I know the answer to that question.
Working with doctors and therapists is part of being a mom of children with special needs – it just is.
It takes up more of my time than even homeschooling my boys.
Doctors, Therapists, and Moms of Children with Special Needs
Phone call after phone call to make appointments, confirm pre-authroization, check to see if the pharmacy carries this type of medicine, check in with insurance companies to question why the bill hasn’t been paid, and to be placed on the waiting lists of recommended therapists.
Waiting room after waiting room.
The endless stretch of time leading up to each appointment, rehearsing the plan for the appointment, the promise of the reward after the visit, the holding of the breath when it is time to go, hoping that he will walk to the car, get into the car, walk to the office, stay in the waiting room.
Meltdown after meltdown.
Blood pressure and weight checks, again and again.
More recommended exercises, more advice for sleeping, more admonishments about what he is eating, how much technology he is consuming, how many medicines he could be taking.
Waiting room after waiting room.
Leaving with more.
More to do.
More to watch for and keep an eye on.
More phone calls to make.
More prescriptions to fill.
More experts to contact.
More appointments for follow-up.
More waiting rooms.
I recognize that all of this is not only because of my son’s autism diagnosis. Add his younger brother’s needs to the mix and his chronic autoimmune disorders, and what you get is three times the medical crazy.
But his autism diagnosis was the beginning of it for us.
The importance of, and at times, overwhelming nature of dealing with doctors and therapists is real.
It is a part of parenting a child with special needs for all of us, in one way or another.
For some of us, it is one of the most time-consuming parts aspects of being a mom.
For all of us, it requires an understanding of how to best work the system, get the optimal appointment times to avoid crowded waiting rooms, make a good impression on the therapist, organize all the medical history and test results for easy access, and learning how to appear calm through it all.
And we just don’t have a ton of resources to help us through it.
Today, I am honored to be a part of the Online Sensory Conference For Parents And Caregivers, speaking about this very topic. The conference is a webinar, featuring top experts in the field as they share tools and strategies to help us help our children with Sensory Issues and/or Autism.
The conference includes the following topics, presented by both parents and medical professionals in it’s offering:
Dr. Elysa Marco: Sensory Processing Disorder Latest Research Findings
Kelly Jurecko: The Sensory Diet – Parents Addition (all about Self-Care)
Shawna Wingert: Working With Doctors and Therapists As A Mom of Special Needs Kids
Lindsey Moyer and Mary Kate Mulry (OT’s): Sensory Needs in Preschool and the Elementary Years
Integrated Learning Strategies: Introduction to Primitive Reflexes
Click here for more information and please let me know what you think!
We can do this.
We are doing this.
The more we learn about dealing with the medical realities our circumstances require, the more we understand, the easier it gets.
And the more our children benefit.