When Jonah was evaluated by the local B-3 center, I knew he was most likely autistic, but we didn’t “officially” have a diagnosis.
It is a very difficult spot. On one hand, you want Jonah to NOT have autism, but on the other hand, you think to yourself “but what if he does? Early intervention is ESSENTIAL to his development! There are so many great programs that he could get into …but… you must first have an “official” diagnosis. We would make all these early-intervention plans, extended programs and the like all hinging on an “IF” his diagnosis came through.
Other people and specialists would hesitate to use “when” it comes through with us. I guess, they didn’t have the authority to give him an “all-access autism pass” but it made us feel as if one outcome were “better” than the other. And that, my friends, is a tough pill to swallow when you know deep down it isn’t the “favorable outcome.”
In reality, one outcome is just DIFFERENT than the other.
But when you are in limbo, you don’t have a real communal identity. On one hand, he wasn’t technically “Autistic” [yet], and on the other hand, he wasn’t like his other peers either, and obviously developmentally behind.
We weren’t part of the “autism” community yet because we didn’t have our “Official Diagnosis All-Access Pass,” but Jonah was clearly far from neurotypical, so we were in more of the “he’s the problem kid” category.
When I took Jonah to the gym, I would have to come get him out of childcare 5 out of 6 times after Jonah lasted about 15 minutes.
We would get parental advice based on other parent’s experience, and it was (and still is) appreciated. But most times, just not applicable to Jonah.
The kid beats to his own drum.
When Jonah was diagnosed with Autism a couple weeks back, I felt a bit like a ship without a harbor. I could count the number of autism families I knew on one hand.
I realized I didn’t know ANYTHING about being an autism parent… about the autism COMMUNITY really, except for a Ted Talk by Temple Grandin…and watching that Ted Talk, she said this:
There’s going to be about half the people on the spectrum that are not going to learn to talk, and they’re not going to be working Silicon Valley, that would not be a reasonable thing for them to do. But then you get the smart, geeky kids that have a touch of autism, and that’s where you’ve got to get them turned on with doing interesting things.
I got social interaction through shared interest. I rode horses with other kids, I made model rockets with other kids, did electronics lab with other kids, and in the ’60s, it was gluing mirrors onto a rubber membrane on a speaker to make a light show. That was like, we considered that super cool.
And that resonated with me. I don’t know what end of the spectrum Jonah will end up on, but I can do super-cool things with him. I can find his interests and his passions, and really unlock them so his potential is unleashed into a bigger world than he can possibly imagine. And if that is my role, I will show him a whole new world.
An awesome world.
So I made this blog. And a Facebook page. I researched what other autism parents are dealing with, I networked with other pages, I found articles and videos and data, and support groups all looking to build a better community and raise awareness for our ausome kiddos who grow into ausome adults.
The outpouring of support has been astounding. In just 2 weeks, over 300 people have come to support us. Friends and strangers alike.
There are autism Dad’s trying to figure out how to potty-train their non-verbal toddler… Autism moms who deal with broken noses, broken bones and uncountable bruises on both child and parent from violent meltdowns. Families dealing with a vast array of different ailments in addition to Autism, all walking this path together.
And they aren’t looking for pity.
They aren’t looking for a nice “Autism Awareness” tagline. Because it doesn’t apply to them. “Raising Awareness” is for people who AREN’T AWARE.
These autism families WILLINGLY go through torture and hell of non-verbal screaming violent meltdowns, the agony of developmental regression and celebrate little victories most people take for granted EVERY SINGLE DAY.
No, these people aren’t looking for pity. They are looking for the same thing I was looking for.
Community and support.
Because in when you are in community, you are not battling alone.
When you are in community, dealing with a meltdown is a million times more bearable when you know that thousands of other families are also dealing with them at the same time and will have your back.
When you are in community, you can vent, rage, cry, celebrate, or WHATEVER and know that at any given time, a hundred, even a thousand people are right there doing it with you.
Community and support. Over years and years.
Do you know what I call that?
So thank you, family.
Thank you to my nuclear family who have been there since Day 1.
Thank you to our extended family around the state. I know we only see don’t see each other as much as we’d like, but we always appreciate the outpouring of love and support.
Thank you too Grandpa and Grandma who live out of town, but will still take the kids and send me and my wife out on a date, watching ALL 6 of their young grandkids, (including Jonah, whom they don’t see often).
Thank you to Papa and Grammy who will watch my boys at the drop of a dime, no questions asked…and the boys LOVE seeing them.
Thank you to Auntie Jana, who invests so much herself into developing them into problem-solvers, and encouraging them to be world-beaters.
Thank you Mrs. S. and Mrs. H. who have been more than just nannies to both my boys.
Thank you to teacher Claire, teacher Peggy and teacher Teri and the countless others who provided invaluable developmental services for Jojo in the past year, where we saw him make LEAPS AND BOUNDS.
Thank you to my friends and facebook friends who have stuck by us. I apologize if I’ve flooded your news feed with autism-related material. That is where I am at in this stage of my life. Thank you for your patience.
Thank you to my church family and my life group, who have provided me with continual prayer cover and support throughout the entire experience.
Thank you to my wife who works tirelessly taking care of people at a hospital and then comes home, taking the brunt of Jonah’s ire simply because Jonah doesn’t see her as much as Daddy.
Thank you to my oldest son Jonny, who taught us how to love unconditionally and how be parents.
Thank you Jonah for loving us and wanting to be loved in return. For showing us happiness everyday. For teaching us endurance. Thank you for the little snuggles, for the hugs, and yes, even for the late nights, because you want to spend them with us.
Thank you God for giving me such a loving family.
And thank you, my new ausome family, for accepting us into your lives.
We are in it together, for the long haul.
Thank you for community and support.