It was late in the middle of the night and we were on our way home from a party. The sky was an inky midnight, speckled with luminous stars. I was almost asleep in the backseat of the car, my head resting casually on the cool window. Suddenly my eyes were jolted wide. Lights were spinning in circles around me and my neck was swaying back and forth unsteadily; I was unable to keep my head straight. I fervently closed my eyes to stop the assault of spinning lights and whooshing sounds, hoping it may give me the clarity to understand what was going on. I was on a roller coaster. But I had just been in a car. My brain didn't understand how to make sense of this. It had never experienced these simultaneous stimulus before. And suddenly my breath held tight was forced to exhale as the car fiercely hit the gray stony bluffs down below, edging the stretch of highway we were driving on.
A car accident, my brain understood in that instant. Scary but a little less horrific based on the fact that I understood what it all was. The reality was so much less painful than the previous moments of terror and uncertainty. I look down, sparkling, broken glass illuminating the perfect light of the moon. Beautiful. I internally assess my body. I was okay. I was alive. I made it.
And that high school experience is the closest I can get to describing how I felt when Greyson was 18 months old. Every cell of my Mothering gut knew something was going on, but my brain didn't know how to make sense of it. It had no past experience to draw from. Everything was so fast and so foreign.
Everyone told me he was fine. Numerous Professionals, friends, strangers I practically begged to also notice the indescribable differences I saw. He's perfectly fine. Greyson is fine. Look at him! He's fine! Fine, fine, fine. I heard the word so many times it began to sound like a nonsensical sound instead of a word I longed to be truth. But unlike the apprehension I felt in the moment I was spinning out of control during the car accident, this unbearable uncertainty lasted a year and a half. 18 months of purgatory from the moment that first tickle of uncertainty until the day the doctor kindly but unwaiveringly told me, Your son fits the diagnostic criteria for autism. And somehow the certainty of the crash, and the understanding of the situation was so much less excruciating than the unknowing and the spinning.
And those memories were jolted loose today as I drove Parker to a school assessment to determine if he did indeed have autistic like behaviors. Since they aren't Doctors that aren't allowed to give diagnosis terms. Time has truthfully given me the gift of past experience. I no longer thought, I hope he does what they ask him to. I hope he passes. He's tired- it's his nap time- I hope that doesn't interfere. Tired, hungry, cranky- none of those things get you an autism diagnosis. Only a box filled with a check next to the appropriate items listed on the DSM-5, The Diagnostic and Statistical Manual of Mental Disorders. The bible used as a diagnostic tool by the American Psychiatric Association.
And all sounds stopped as we slowly walked toward the room I haven't been to in a long, long time. And although I am the same girl, I'm somehow completely different. I entered this room filled with past demons and whispering ghosts, lingering from Greyson's many months of Early Intervention preschool, also, in this exact same room. I recall the many months of uncertainty. I want to go back to the ghost of me, and hold her, and weep. The last time I walked out of that building, I never thought I'd see it again.
And Parker walked right in, and he played. Of course he played. Toys he's never seen before filled the room and he was so happy.
He played in all the ways that make his heart sing. And it turns out, we didn't even need to be there. Isn't that funny? Since we are not sending him to school as soon as he turns three, we don't need an assessment to decide his school placement. He still has to go through the diagnostic evaluation by the state before he turns three in April, but for today- he got to be just a kid and play with his Early Intervention Teacher who usually conducts home visits with him.
And with nothing else to do for a little while, and no where else to be, together we explored.
Your eyes they shine so bright I want to save that light. I can't escape this now, unless you show me how. (Imagine Dragons- Demons)
And I realized as we were leaving, the ghosts were no longer there. I made peace with them. Maybe that's the real reason I was there.
Definitely understand that "purgatory" feeling! One of my twin boys received a "borderline" Autism spectrum diagnosis nearly a year ago... and for the past year we have been doing various therapies (we started Behavior therapy with the help of one of your posts & am now looking into Equine therapy!) Some of Marc's therapists have said they don't agree with his diagnosis, so I struggle with a feeling of being...in between.ReplyDelete
We are going to a school testing next week to determine what services he'll need from the school system once he turns 3 in April. And while I continually pray for his teachers & therapists + for his twin brother Andrew to not feel left out with all of the Intervention work going on with Marc (this fear turned into a reality today as their preschool teachers suggested we separate the twins next year because Andrew tends to act out seeking attention likely due to all of the attention Marc tends to get, sigh), I think this time I will pray for Acceptance, Courage, and for our boys to know they are BOTH Loved beyond words.....
LOVE your pictures and your beautiful way of sharing your family's story with others, Thank you Chrissy!
You are not alone. I have a 4 year old that was diagnosed at-risk at 22 months, and ASD at 3 years (Luca). He has a brother that is 16 months older who is neuro-typical (Micah). We have to work really hard to show Micah that he is just as important as Luca is, and help him understand that Luca needs help with things that he (Micah) already knows. We encourage a relationship between them, where Micah gets to be the big brother helper, and it gives new meaning to his role. Also, our ABA Therapists include Micah in their play
, so he doesn't feel so left out. It also teaches Micah how to better understand, and therefore, interact, with his brother. Also...borderline Autism means that Marc needs some extra help. Don't discount the opportunity to get him ALL of the help you can! The diagnosis is scary, and even a bit intimidating, but it opens the door to the resources that he will need for long term growth.
Chrissy, I am so glad the ghosts are gone! Hopefully the energy you and Parker left there will be a salve for someone else who needs it.ReplyDelete
And I love love love the next to last picture of Parker! Made me smile so big! I wish I had taken more pictures of my kids as they were growing up. When I have grandkids, I resolve to take more pictures! :-)
Lisa from Tennessee/Ohio
An unrelated thought: Have you ever thought how good it is that you live in CA, and can experience the outside - versus St. Louis, where it wouldn't be so easy? I live in Chicago and love seeing all these outdoor shots. Thank you so much for sharing.
You are such an awesome writer, and I seriously think you should consider writing a book. I know that you could positively affect the lives of many, many Mothers who feel what you feel, but don't know how to put it into the words that you seem to find so easily. I admire your honesty and your ability to see the world through the eyes of your boys. This has been the greatest gift from my experience with my ASD son...a new and improved vision! I don't know that I actually SAW the detail of the world around me, until he showed me how. I've said it before, and I'll say it again...this special little man has taught me more than I will ever be able to teach him. What an incredible gift! :-)