Notes on Nolan | When Did You Know? | Written by Amy Mikla
In my mind, I am going around and around trying to remember when things may have started to change.
And people do often ask me, ‘When did you know? When did you start to think Nolan might have autism?’
I have general memories about that time period, but if I’m being completely, 100% honest with you and myself, the timeline is all muddled in the memory sections of my brain.
I think part of it is lost because my husband, Ben, and I were just trying to get through each day with 3 kids under the age of 5, while working full-time jobs.
Most of it is me trying to protect my fragile emotions; tucked away messy and out of where I can’t easily access the details.
I’m not really ready to sort it all out.
I’ve thought long and hard about going through the thousands of pictures and videos I have taken over the years, to carefully analyze what we were doing, how you reacted.
Actually, I have tried.
I just can’t get very far.
As I scroll through the albums, I see a child that is visibly happy, and is interacting, and is going towards the action of his older siblings, as opposed to playing solo.
These are all things that are very developmentally appropriate.
There are parts of me that are actually afraid that I’m going to be able to suddenly see a difference.
One day ‘typical,’ the next, maybe not as much.
And with these images, memories will come rushing back.
And as I’ve said before, I’m not ready to unpack these feelings; the good, the bad, and the life I thought my son would have.
There are some details about this lovely boy’s young life that I do know, mainly from my heart.
I remember when you babbled ‘mama’ and ‘dada’ when you were just 10 months old.
And at 11 months how you toddled across the kitchen floor to eagerly catch up to your brother.
I can remember the first time your toe touched the water of a warm swimming pool, and you smiled from ear to ear.
And the summer we were all swimming at the lake and you leaned over to take a drink. (Eww.)
I remember the hours you spent jumping in your bed at night when you couldn’t calm your body and weren’t ready to give in to the bedtime routine.
I remember when you ate more than 5 foods, and would actually eat any food that was laid across your highchair tray.
And at your ‘Neverland’ themed birthday party with your siblings, where all you wanted to do was wear a lifejacket and carry around the plastic ‘pirate hook’ hands all afternoon.
I remember the handful of times we tried to have a hearing test with you, because you no longer responded when we called your name.
And when they were finally able to drain your ears under sedation, and afterwards you looked towards every tiny sound, as if your ears must have felt like you’d been underwater for months.
I remember when your dad started hoisting you up on his shoulders when we walked in public, because you refused to hold our hands, and would wander away otherwise.
I remember when we drove to Florida that one year, and you found a snorkel at the rental home that you never once let go of for a week. (Yes, you did hold it in line at Disney.)
I remember when you were 18 months old, and at daycare you ran straight into a metal pole, suffered a concussion, and couldn’t stand or crawl without falling over.
I remember taking you for an autism screening at 2 years old, and being told that you did not have autism, and that we should come back when you were school age if we had the same concerns.
I also remember something in me not feeling satisfied with that conclusion, and we kept seeking help.
I remember sitting in the clinic when you were being re-evaluated to receive autism services.
And I remember getting the recommendation on September 15, 2015, that we move forward with intensive ABA therapy.
These are the things I remember, all jumbled and not necessarily in the correct order.
I don’t think it’s simply one single thing that ‘clued us in.’
It’s much, much more complicated than that.
And I’m quite certain that every autism parent has a different story.
For us it was a combination of events, and questions we had, and speculations from the specialists we saw, and needing to have a way to move forward.
I have learned that with knowledge there is also power.
I remember with distinct clarity that once Nolan had the diagnosis, we were able to immediately take advantage of programs and waiting lists that we had only heard about prior to the official write-up.
And through the denial and pain and frustration and sadness, that diagnosis set us free.
As I write this, I’m starting to ask myself whether it even matters how we got here?
The important thing for us is that we’re here now, and we will continue to navigate through this life, trying to make it a better place to exist for our son.
Nolan on his dad’s shoulders. His happiest place on Earth in “The Most Magical Place On Earth.”