On this day when everyone lights it up blue and has autism on their mind, I would just like to say that as a parent of a child with autism, all I want in this world is to understand my son and for others to try to as well.
Only a few short weeks ago, I could not say the word autism without a lump growing in my throat and my eyes welling with tears. In the early days after diagnosis, I couldn’t even so much as utter “Hi, my name is Laurel and I am calling regarding services for my son who was diagnosed with autism,” without totally breaking down while calling providers. Sometimes I couldn’t even make it past my own name and at times, had to hang up and call back later, only to cry again.
While I already knew for many months with everything that was in me, there was nothing that could ever truly prepare me to hear the words falling from the doctor’s lips. And fall they did…those words hitting the walls of my heart like concrete blocks, leaving jagged chunks of what I thought would be, could be, scattered along a path I had laid for my family. For my son.
Since that day, I’ve cried just about every day. Sometimes from sadness, sometimes anger, a lot of frustration, and most often, because of love. You see, amidst the fallen pieces – big dreams, hopes, the vivid picture I could not only see, but feel, like the strokes left behind from the artist’s brush, the texture was smooth in some places and rougher in others. Like the tiny particles remaining from that concrete rock that collided with my version of reality, they were now imbedded in the colors of my painting. As I traced the dream with my fingers I could feel smooth, then bumpy, rough…and I knew this would be forever.
This authentic and lucid dream I had was once again, not mine. It had never been mine to paint – the canvas was surely mine, but the colors and texture were not up to me to choose. I couldn’t ever have imagined the kaleidoscope that would follow…
I’d hoped for once, my maternal instinct had failed me. That the doctor would tell me I was over reacting, that every 3 year old spends incessant amounts of time organizing and perfecting, lining up trains, cars, magnets on a refrigerator. That leaving the house or transitioning activities is a challenge for any toddler. But she didn’t…
After a 3 hour observation and evaluation and an encyclopedias worth of paperwork, our entire lives, our complete history on display, I saw it in her eyes. I knew what she was about to deliver. She did it in the kindest and gentlest way, and I will forever be grateful for her compassion and empathy.
She provided us with some papers, said we were doing all the right things already, told us we could contact her at any time for any thing, gave me the warmest hug, and sent us on our way. We decided to keep it to ourselves for a while longer; we just weren’t ready to tell others.
I think some of that was fear talking. He is still little and maybe with enough therapy we could help him be as neurotypical as possible. “Neurotypical” is the politically correct word for “normal.” I just could not get past the “autism” word. I was stuck and scared.
My brain understood, but my heart hadn’t yet caught up. Even over a years worth of mother’s intuition did not prepare me. Why was this at once, so hard and yet so easy. There was overwhelming relief because – finally! Finally, we were not living this alone; it wasn’t manifested in some version of our own reality. It was real.
It’s been very real.
I’ve gotten him all the help I can find. Speech therapy, more occupational therapy, ABA therapy. I read and read and read, learning everything I possibly can about autism and sensory processing disorder. I joined online support groups where I’ve met some amazing mothers and no longer feel so alone and lost. There are friends old and new who became my angels, and they know who they are – without them, I would have crumbled. I don’t believe most people have even the slightest inkling what autism families go through – I didn’t. Add in additional diagnoses and medical challenges, and it is literally all-consuming in every sense. All day. Every day.
Initially, we were afraid to tell family and friends because we just didn’t want our little boy treated differently or analyzed. This was fear talking and I know now that those fears would have never happened. So we relied on each other for support, but as a scared mom I needed so much more, and found it in my online autism community and among amazing medical professionals I now so thankfully and lovingly call, friends.
You see, when you have a child with autism your biggest fear is the future. Not so much the near future but the distant future. Will he go to college or will he need to be cared for at home. Will he speak or will he be nonverbal forever. Will he ever have a real friend. Please Lord, will he ever call me “mom” or say “I love you” and on his own. Will he learn to point. Will he be potty trained. There’s so much more…
Just because a child does not speak, doesn’t mean they can’t communicate. Just because they don’t make eye contact, doesn’t mean they aren’t listening. If they don’t want to be touched, it doesn’t mean they are incapable of love. If they need to spin, yell, hum – it’s because it feels good, it serves a need – and it’s okay.
Autism is a spectrum disorder. A person with autism can be low on the spectrum (high functioning) meaning they can communicate and have some challenges but with time can usually manage them and live a normal life. Being high on the spectrum (low functioning) is well, the opposite usually. They are usually nonverbal individuals who could possibly need care for the rest of their lives.
It’s hard to define the autism spectrum. As the saying goes, when you meet one person with autism you meet ONE person with autism. They are all different and all extraordinary – ALL of them. They all have different challenges and strengths. Not one person with autism is the same. Please remember that. Everyone – typical or not – is their own unique masterpiece, crafted by His hand.
If I could put Luke on a pedestal, I would. He brings joy to every person he touches. He is just the most beautiful gift God has ever given me and I am so proud to be his mother. I shed many, many tears of joy because of him. My life is richer, relationships more transparent. As if all we had already been through didn’t cause me to recognize life’s value, any remaining scales have fallen from my eyes.
My canvas I thought, was already perfect. What I didn’t see was the full spectrum of colors and how the mixing, the texture, the unevenness, would be the very beauty defining our lives together. Paint poured out like tears flowing, the canvas takes new life.
The white light of soul, prism refracts. A spectrum – a beautiful kaleidoscope of vibrant color – is born. To me, Luke, and every person with autism or a “disability”, is the essence of purest white light refracted. Where life is not distorted, but clarified and transformed. It is innocence and purity, intrinsic honesty and beauty. But to see it, you must surrender your canvas to the Artist’s brush. You must trust. You must have faith.
April is Autism awareness month but for our family, it’s every day. Every day is a chance to educate others because we live in a time where it is estimated that 1 out of 68 children in this country are diagnosed with Autism and the numbers are as high as 1 in 34 in some parts of the country. I think most people know a child or person with autism. If you don’t, the day you do, smile and feel blessed, because you have met the very essence of spirit walking this earth.
I will not light it up blue because to me, autism is a beautiful kaleidoscope of constantly changing and overlapping colors.
Learn what autism really is and how you can involve children and adults with autism in your every day lives. Teach your children about autism. They will be encountering many peers on the spectrum, all different, but all extraordinary. Teach them all this, so they can become adults that will be tolerant of the changing world around them.