A Diagnosis For My Boy

Four years ago I watched you from my son’s bedroom window as you went back and forth with your colleague in your car– attempting to convince her that my son had autism. You both had just evaluated him. I understood the urgency– I knew that you understood. 

I didn’t have a fancy job title and didn’t have an outwardly impact on our society. I didn’t possess any powers and my neighbors didn’t know my name. I didn’t have anything to give or anything to spend other than being the best mom possible. I am everything to my children and in turn everything to society.

It is my job to raise my children and my job to hopefully create independent, respectful and happy adults that will give back to our society.

This is my giving back to society.  Whether it is as simple as offering a seat to someone or picking up litter– or knowing to smile when someone walks by. I will do everything for my children. 

I watched and bit my nails down to the skin. I knew that my son, just like his sister, had autism. There was never any doubt.  I also knew that society still thought of the typical signs of ASD rather than the others.

How can a child who makes eye contact and speak be autistic? He can.

Knowing that I not only had to swallow the fact that my son had ASD, navigate years of his behaviors, spend future years advocating for him but that he may not be found eligible because of one person—that his future lay in the hands of one Speech and Language Pathologist who was overcome by his words nearly toppled me over.

It made me want to vomit.

I wondered if I begged, if I cried— would she help my son?

Parents who do not receive a diagnosis (not because their child isn’t autistic but because the resources are scarce and professionals are pushed to refrain from diagnosing) spend years fighting for their kids.

This fight is stressful and expensive– it takes the parent away from the child. It has a toll on the marriage. Every PPT leaves you second guessing yourself and your sanity. It is like sandpaper continuously grinding down on a tooth. 

A toll on the mental health of the caretaker.

The child who is growing becomes more aggressive, frustrated because of their inability to communicate effectively. Receiving a ‘speaker device’ at an early age and being taught how to use it effectively is key to a child’s progress and peace at home.

Early Intervention is key.  SLP, OT, PT, SPED services are key.  Communication is key. 

By the time you came back in from your car, I knew that your colleague had not budged. So, I began the all too familiar battle in my head where I try to rationalize and accept what is to come.

When you have a child with ASD there is not much time to dwell on anything– it is either you accept, reassess, quickly shift your expectations and adapt or…well, you never want to make life harder… always make it easier.

This is something autism has taught me and this was not my first rodeo.

You sat down at the table, the one I had received from a ‘Free Cycle’ site and dragged it into the house while my son was throwing toys in the living room. Sitting across from you at that table, I felt such shame, angst and I felt extremely little.

I felt pathetic for asking you for help. Above all, I felt profound sadness for my child. 

But then you spoke and you told me that my son had autism and that he was eligible for Early Intervention Services. The feeling I felt in that moment was greater than any medal I had ever won. It was greater than any goal I’d ever scored because I knew that my son would get help.

I cannot express to you how grateful I was at that very moment for you and how grateful I am now.

It’s silly because as a parent you don’t want your child to have autism but I had long known that he did and the only way to move forward is to accept what’s at hand and work with it. There is no luxury for time or feeling sorry for yourself (only after bedtime) because it takes you away from being proactive. 

I dared not look at the SLP who was fuming next to you.

Later, she would raise her voice and say this: “You do realize what this means? His autism diagnosis will stay with him for life. People will define him by it—it’s not something to be taken lightly.”

She was wrong.

My children will never be defined by a diagnosis. My children will receive the help they need and do amazing things in this world.

Here we are, four years older and that little boy who was throwing blocks in the living room is turning six next month and he is going through a difficult time now.

His triennial PPT is coming up next week and the team is looking through your initial diagnosis. He may lose his IEP and he may not. It will be another battle. 

Thanks to you my son has spent the past four years receiving the services he needed. Instead of being completely shut off from the world during the Covid-19 Pandemic he was seen by BCBA and ABA trained professionals daily. 

Thanks to you my son has made great strides. Thanks to you the battle has been easier. Thanks to you, my son has had an IEP. Whenever my son is going through a difficult time such as right now I don’t need to prove anything or fight any harder than I already am.

Thanks to you I have been more available to my children and I can use the scarce resources that we have toward them. I wish you knew the impact that you had on this little boy’s life. 

You spoke up and you pushed for this little boy…and I am forever thankful. When life gets hard I remind myself that there are people like you. There are people who fight for what is right and speak up. To your colleague who said that my son’s diagnosis would define him, let me tell you about my son: 

He just lost his second tooth.  He loves Checkers, Chess, Trouble and Sorry.  He plays soccer and rooted for France during the World Cup. His favorite cartoon is Gabby’s Dollhouse. He still loves cars and trucks but his interests have grown. He is still loud and wild and he adores his older sister. My son has friends and this weekend we are going to a classmates birthday party.

No one ever labels him. No one ever refers to him by his diagnosis.  

My little boy is loved, amazing and he has autism…and that’s okay!