Navigating Your True Course as a Special Needs Parent
"Suddenly, the hopes and dreams I had for my child - and myself - got put on a shelf. I found myself on a mission to find answers and get help. After all, my main objectives were to understand what I was facing and to help my child. I sought a plan, knowing I was the one who must pilot the ship on this journey."
I woke up one day, knowing deep down inside that something was going on with my child. I knew something was not quite right, and others had offered statements of concern, leading me to think about seeing a specialist.
Suddenly, the hopes and dreams I had for my child - and myself - got put on a shelf. I found myself on a mission to find answers and get help.
After weeks, or actually months, of waiting to see a specialist, I finally received a diagnosis. I knew it deep down, but it still hit hard. I remember vividly what it felt like to have the developmental pediatrician walk into the cramped office and announce that our suspicions were right.
I did not want to be right. I wanted to be very, very wrong. But, there it was: autism spectrum disorder. The words filled the room like a thick fog. And that made it hard to see the hopes and dreams we once had. I knew that thereafter I was going to have the lifelong responsibility of caring for a child with special needs.
So, as any parent does who receives a scary diagnosis for their child, I went home and did some research. I traversed websites and gathered cursory information which I copied and pasted into word docs.
The mountain of papers grew almost daily. But, I felt better for having done some research and gathering important stuff. After all, my main objectives were to understand what I was facing and to help my child. I sought a plan, knowing I was the one who must pilot the ship on this journey.
The diagnosis catapulted me into a frenzied state of mind. I read a lot about the “window” that would close at a certain age; according to “experts” I had to figure everything out and pull my child from autism before the “window” shut.
I started making files for everything I was researching. I had thousands of little plastic tabs and two tall, metal cabinets which housed the army green folders. I was determined to organize everything I needed to be successful on this special needs journey.
IEPs came along, therapists came along, medication came along. The amount of paperwork involved was overwhelming. My file cabinets ran out of room, and when I needed something, I had to search folder upon folder. It was frustrating.
And daily life set in, leaving me, as a special needs parent, feeling frazzled and under water.
One day I found myself in the middle of this special needs ocean. I was surrounded by all the things people suggested I do. I was drowning in documents and records and articles and recipes and lists.
Thoughts entered my mind about how much life had changed;
how much my dreams had changed.
It was like being caught in a special needs whirlpool.
As time went on, I grew accustomed to the way life had changed and, perhaps subconsciously, I dropped the proverbial anchor right there.
How I was managing everything, and the way I was keeping it all together, became the only way I managed and kept everything under control. The problem was, only I knew what I was doing. If anyone had to step in for me, they’d be at a loss.
A special needs parent becomes immersed in this challenging yet rewarding world of caring for someone with a disability. Unbeknownst to us, this mooring becomes our point of reference for everything we come to believe about parenting a child (soon to be teen, then adult) with special needs.
The vision we have for our future and our child’s future becomes framed by the label. And perhaps we are alright with that. Perhaps we think, This is how it is…my child’s gonna be okay because I am here…I will take care of him always, and he will be alright. I’ve got this!
Have we, though, stopped to think that maybe this anchor, although grounding, is ultimately going to weigh us down, along with the child? If we become confined by what we perceive as safe, good, and sufficient, we may not even be considering how to steer our lives, let alone the child’s, in the direction of its full potential.
There was so much that I didn’t know in those early days. You don’t know what you don’t know. I had my file cabinets, I had my binders, I had my lists.
Thank goodness though that nothing happened to me, because if someone had to step in and care for my special needs child, she wouldn’t begin to have a clue about his care. Take one single aspect of his life - his dietary needs - and I had nothing concrete and detailed to pass along to anyone who would care for him, whether I was on a trip to New York or a trip to Heaven.
In the world of special needs, well-meaning people say go here, do this, get that. And often times, out of intense love, and possibly a touch of desperation, we stick to those ideas like it’s our new destiny.
What if we tossed the map and charted our own course? Is it time to pull the anchor up and open your eyes to a new perspective about special needs parenting?
One day, more recently than I’d like to admit, I realized that I won’t always be there for my son. I mean, really realized that.
And because I want the absolute best for him, with seamless care, if I was gone, I started searching for something to help me plan. My overstuffed file cabinets and NOTES on my iPhone were not going to cut it.
I wanted - needed - something simple, something effective, that would take all the paperwork I accumulated and all the knowledge in my brain, and put them in one place. A place where others I trusted could go and learn about life for my son. What I found was truly remarkable.
As I’ve learned, every special needs parent wants to pursue their dreams. Every one of us wants to worry less. And, most of all, we each desire a full and happy life for our children.
I realized that if I didn’t pull up that anchor and chart a course for both of us, we’d be stuck for a long time. That wouldn’t serve me, and it surely wouldn’t benefit my son.
What’s priceless is the freedom that comes with deeply understanding this truth: I cannot be my son’s caregiver forever, so while I am still here to control the outcome, I must ensure care for him and make plans so he can live independently from me.
Once this truth sinks in, the freedom comes in taking action. I found the life preserver I needed, and did not know I needed! There is great peace of mind in knowing you have a perfect way to secure the plan for your child’s lifetime. Perhaps it’s time to navigate to a fresh point of view.
Keri Horon - Chief Blogger, Vest
P.S.: I'd love to hear from you. Drop me a line in Comments below!
About the Author:
Keri Horon is a special needs parent and a veteran high school English and journalism teacher turned writer. She enjoys reading, hiking, gardening, cooking, traveling, wine tasting, and practicing yoga. She has a passion for educating people on all things autism. Keri works as Vest's Chief Blogger and Digital Media Manager.