The day you received your diagnosis, it was no surprise to me.
Most would say it was a long time coming.
Some would say we did things backwards.
You see, you have been stubborn since the day you were born. Literally. You took your sweet time despite the fact I was induced. So much so, the doctor was ready to take me in for an Emergency C-Section because you did not want to cooperate. You were given a deadline and if that was not met, I no longer had a choice. They were going to intervene. Little did I know, that was just the beginning of the never-ending deadlines we would be given for you. The running joke is that you are a Heffner. It is in your blood; you’re stubborn like your Daddy.
You took your sweet time to start crawling. Why wouldn’t you? You had Mom, Dad and Sissy at your beck and call.
The doctor told us that if you were not walking by 18months we should have further evaluations done.
Two days before that 18-month mark, low and behold you walked across the living room at Grandma’s house, with an audience, to get a piece of cheese.
So we waited.
We went through early intervention.
We waited again. You would make just enough strides to keep us on our toes guessing what the next move should be. After all – you were just being stubborn, right?
In the beginning, Autism was never brought up. I knew little about the topic. We knew your cousin has autism, but you two seemed so different. How could that be?
One night I was scrolling through my Facebook, and I saw an ad for a company hiring ABA technicians. Paid training, flexible schedules; I was already working full time, but for some reason I was intrigued.
At this point, your dad and I were working really hard to get on the same page, and we were discussing the prospect of further evaluations to help your development. We decided that this was a good way for us to be more educated, and to see if this was something we should investigate further.
So, I applied. I was offered the job, and I enthusiastically accepted. After all, it was an opportunity to be educated and bring in a little extra income. Why not?
I started my training.
I sat and learned.
I also started to slowly sink into my seat.
The signs were all there. Everything.
I knew it was time.
I talked to my boss, who also had a child on the spectrum, for recommendations on places to get an evaluation done.
At this point, there was no doubt in my mind.
My sweet and stubborn boy has Autism.
How did I not know sooner?
I’m his Mom, shouldn’t I just automatically know these things?
I was so sure I was doing the right thing by waiting and letting you figure things out. I guess looking back, I could identify that as denial – and I certainly see it today as a source of regret. I wish I’d seen it sooner.
I made the call, and the evaluation appointment was set.
It was no longer a question. I was certain what was coming ahead. It was now a formality that needed to be done to move forward, so that we could get you the therapies you needed and deserved.
Three evaluation appointments later, there it was.
Autism Spectrum Disorder.
I knew it was coming, but the sting was still very raw. Your dad and I will never forget that day. My denial quickly turned into a “ready to fight” stance.
All the training I just went through taught me the signs, and how to work with children with Autism.
However, I learned nothing about the diagnosis process.
Maybe I still had some of that denial hiding in there, as I was trying to hold it together and stay optimistic for what she was about to tell us. Your Dad, sitting next to me, asked, “I know it’s a Spectrum. Where does David fall?”
This Doctor was good. She so very gently responded, “While I couldn’t get a full assessment due to the lack of language, David is not mildly Autistic. He, at the very least, is on the severe end of moderate Autism.”
I took a deep breath, and I swallowed hard the lump in my throat.
There it was; I’d heard what I needed to.
Through the quiver in my voice, I asked, “What is next?” Then, I got my pen and paper lined up and started scribbling as fast as I could, writing down everything she rattled off.
We left the office, and as we walked out your Dad and I instantly switched places. He immediately felt the grief of what we were just told; I was ready to go to battle. It was time to get down to business.
Maybe it was the guilt in me for waiting so long to get to this point. Now I felt as though we were so far behind.
Maybe it was the Mama Bear in me ready to get down to business.
I suited up, and I was now ready to attack the stacks and stacks of notes I had taken. I started making the phone calls to get the ball rolling.
Everywhere your dad and I called, we heard the same thing. “We’ll put you on the waiting list, and we’ll give you a call if anything changes.”
Then, we found a place that had an opening. They were close. They had a center. They did social ABA. It sounded too good to be true, and it was. Paperwork had been signed, and we were beginning the scheduling process – only to get a call that one of the BCBAs quit, and they no longer had a place for you. We were absolutely heartbroken. Now what?
We kept working. We were not going to give up on you.
We finally found a company we loved for you, and we knew it was the right fit from day one.
No matter how much research I did, no one could prepare me for all of the heart wrenching evaluations that followed the diagnosis to get you into therapies – and then every six months thereafter, to get a re-approval for insurances. We have to prove that you deserve help. Everything constantly focuses on what you CAN’T do.
No one in this journey – but us – ever puts focus on what you CAN do.
I couldn’t be more proud than I am today to watch you grow.
Right now, you’re in a stage that I refer to as “verbal but not conversational”. You can tell me what food you want to eat, or what movie you want to watch. However, you can’t tell me how your day was or how you’re feeling. Those are struggles for both of us right now, but we know they’re temporary.
You amaze me every day.
You have a determination like no one I have ever seen.
You walk around with not a care in the world about how people look at you.
That is something I truly admire so much about you; and wish I could learn to do. I struggle with it daily.
You are smart.
You are funny.
I wish so badly so many people would look past the Autism; see past the behaviors, the meltdowns, the stimming – and get to know the amazing kid that you are.
They have so much to learn; just like I did.
You have taught me so much, and you have truly made me a better person.
You have taught me patience.
You have taught me to slow down, breathe – and appreciate the small stuff.
I share your story, because it is my hope that by doing so it will bring awareness. Maybe educate even just one more person about the Autism world, and to bring those who don’t understand to a level of understanding that allows them to accept you for who you are.
To help one parent who may be where I was, not that long ago.
Because, Kid, you will move mountains.