The pandemic changed a lot of things for a lot of people. And, while change is inevitable, most parents didn’t realize at the beginning of 2020 just how much remote learning and working would create dynamic shifts in the basic family structure. While most families have been dealing with societal challenges for obvious reasons, first-time RedLily® contributor Erin Schneider has been managing a different kind of modification within her household—one that’s much more life altering. Please take a moment to read this insightful reflection from a Colorado mom who continues to face the pitfalls and possibilities of her son’s autism diagnosis, which has ultimately transformed the way she lives, works, and helps other families going through the same.
“How My Son’s Autism Diagnosis
Became My Life’s Work”
In April 2020, as our family struggled to adjust to the new realities of COVID-19—quarantine, virtual school, etc.—and life as we knew it coming to a halt when we received some difficult news. My son, Henry, was diagnosed with Level 2 Autism Spectrum Disorder. But, the news of an autism diagnosis was not entirely unexpected.
Ever since he was a baby, my mother’s intuition sensed that something wasn’t quite right. His first year was filled with sleepless nights and hours of crying and frustration. We saw countless doctors in search of answers, but there never were any. We would have months where we thought maybe everything was fine, and other months where we thought something was terribly wrong.
Henry was speech delayed, and we got him into a state-funded early intervention program that helped him quite a bit. He received speech therapy, occupational therapy, and other support. We would occasionally wonder about autism, but there were always rationalizations to have us look another way.
In 2019, our naturopath encouraged us to have Henry tested. We hesitated. We didn’t want the label for our little boy. But eventually we decided to move forward, hoping for more answers. We got on a wait list in October of 2019. By the time his assessment actually came up, it was April of 2020, in the middle of COVID lockdown. We had our assessment with Children’s Hospital through Telehealth, a relatively new and novel concept at the time.
When we finally received the official diagnosis, I was ready. Something in my heart told me that it was coming. It was difficult news, to be sure, but I am a problem solver, and my first instinct was to get to work doing everything I could to help and support my son.
What I found was a dizzying and confusing road, filled with overwhelming amounts of information, countless choices and no real guidance. All we were given were raw, long lists of providers and a vague idea of what services to explore. We had to find our way, in the dark, through a dense, twisted forest.
That is just what I did. I spent hours upon hours, days upon days, making phone calls, sending emails and seeking answers. There were endlessly long and confusing applications, interviews with potential providers and hours of research. All of this was on top of trying to keep our family afloat through a pandemic, and dealing with my son’s wild mood swings and behaviors. It was exhausting beyond anything I could imagine.
In the end, I found providers that understood our son, and could help. Through research and listening to other parents with children of disabilities on various social media groups, I began to learn about ways Henry could qualify for government programs to assist his therapy and support.
As I fought all the administrative battles, we saw our son grow and blossom, working with the right therapists employed by providers who matched our own family’s philosophy. We were all working hard, Henry in particular, and we saw real and inspirational progress.
There were parts of this journey where I asked myself, “how can other parents do this?” There is so much to learn and understand. Some of the application forms are so difficult and confusing, they border on cruel. My husband and I are both educated people with degrees in English, and the forms could be challenging for us to understand.
A welcome change
I became inspired by the idea of helping others realize the same support and success for their children as we have seen with Henry. That is where early inspiration for my business Mountain Summit Consulting came from.
Naturally, I started to talk to providers of all kinds because I wanted to understand what they offered. As a result, I decided I wanted to help other families realize the same success we’ve had. This is where my challenge—the months of phone calls, voicemails, emails, frustration and battle—became my career.
Now that I know the path, its possibilities and pitfalls, I want to put that experience to use helping other parents. I know how scary and confusing it is to get that diagnosis for your child. It rocks your world in a way that only a parent can understand.
But if I could go back in time and talk to myself then, the biggest message I would have is that things are going to be OK. Help is out there and there are better days ahead.
We got the right help for our son. We aligned with the right providers for our needs. As a result, the progress Henry has made the past year has been nothing short of remarkable. I want to help other families realize the same success.
Following a new path
The good news is that I recently launched my new business, and it has already been an extremely rewarding experience. I offer hands-on consulting to families with children with disabilities. I want to work with families of all kinds, so they can have the success that my family has had, without having to struggle for direction or overcome the hurdles we had to.
My professional experience demonstrates that I am a person who gets things done. I’ve worked in sales, I’ve run my own business as a dog trainer, and I’ve managed customer service as a vice president in an online startup. In each of those roles, I was known as someone who cut through the fog, got to the answers and made things happen.
And that’s what I look to do for families now. I fought my way through the maze of confusion to support my son. Now I can use that experience and understanding to help others like us find a more direct path to success.
All parents have so much on their plates. We are all doing our best to support our children every day. A diagnosis of disability can feel frightening and overwhelming. I want to help those families instead see the possibilities, and help them find their way to better times, as we have. Truly, my challenge became my career and my passion. If you or someone you know has a child with a disability and needs help, visit mountainsummitconsulting.com.
About the Author:
Erin Schneider is the founder of Mountain Summit Consulting, a firm whose purpose is to help the families of children with disabilities find the best services and support available. She is the mother of an autistic son and Neurotypical daughter and knows the challenges families face getting the right help for their children. Erin is an experienced problem-solver and advocate and lives with her husband, children, and two Norfolk Terriers in Westminster, CO.
*Note to RedLily® Readers*
Have you got an inspiring story to tell? Perhaps you want to share an important “giving back” initiative, or a passion project that means a lot to you, or a personal experience that has touched the lives of many. We’ve all gone through things that have made a difference in our lives and resulted in incredible learning or healing. We’d love to hear from you!
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We know what it’s like to go through certain things (whether personal or professional) and release them into cyberspace knowing that other like-minded individuals will reap the benefits of your bravery and courage. Creating this platform is the least we can do to help you do the same.
The RedLily® publishing team