Skip navigation

Calls to Action

What my son's autism diagnosis taught me about myself

This post is by Kate Cortelyou who resides in Nashville with her husband and two young children. She is a retired giraffe keeper turned stay at home mom. Her son was diagnosed with ASD in the spring of 2017. His diagnosis instilled a new passion in Kate who has been busy educating herself on special education rights and disability rights. She hopes that the future will allow her to be an advocate for those in the community who need a stronger voice. 
I’m still very new to the special needs parenting world. My son was diagnosed with autism last April after a year of secretly wondering to myself what I was doing wrong with him. It was a lonely and guilty feeling. Being a mother is something that I don’t feel came easy to me. I had months to prepare myself during pregnancy and it took just as long after James was born to feel like I was getting the hang of it. When he was diagnosed just after his 3rd birthday, I was pushed backwards into this incredibly confusing world. First meetings and evaluations with doctors, therapists and school professionals left me feeling totally naive and completely unfit to take on this exceptionally important role as an autism mom. IEPs, SLPs, ABA, SPED, OT, IDEA, ADL: what did all of this mean? These people were letting these abbreviations roll off their tongues like it wasn’t totally foreign to them. Everything I began reading on autism and parenting was pretty much the EXACT opposite of what I had been doing.  I felt like I was constantly going against traffic. Everyone and their children were going in one direction and here I was, attempting to part the commotion and congestion in order to make room for my son.

After a heated evaluation and eligibility meeting with the public schools, I was given the choice for placement for my son’s IEP. I picked one that has turned out to be a great fit. The only downfall is that it is on the complete opposite side of the city from where we live. Twice a week, we pack up the car and drive 30 minutes to a school in a neighborhood very different than ours.  I’ve started grocery shopping while I wait for him because is there anything more glorious in motherhood than shopping without kids? After a few visits to the store it dawned on me how much shopping in an unfamiliar grocery store is so similar to parenting a child with special needs in those early days and weeks after a diagnosis. Nothing is where it should be. I wasted time wandering around looking for things that should have been in aisle 3 but I found it in aisle 12 on the bottom shelf, hiding out of plain sight. Everyone is walking the opposite direction and I’m constantly excusing myself or apologizing for being in the way. 

James has now been at his new school for about 7 months and thriving. I recently called an IEP meeting to change goals and request more services. I would have been unrecognizable to the scared mom that sat in his evaluation and eligibility meetings. I was the one leading the meeting, citing special education law and using phrases and words that a year ago I had never once uttered. When we left the meeting, my husband looked at me in disbelief and told me he couldn’t believe how knowledgable and in control I was. Being handed the role of autism mom is not one to be taken lightly; it comes with great responsibility. There was no other option other to throw myself into this world and learn as much as I could.
 
Now, when I grocery shop while he is in school, I know where to go. I know where to find things, I recognize the employees and they recognize me. I’m no longer flustered when I leave the store. Being a special needs parent takes time to adjust to. Learn as much as you can and continue to enter this foreign world, no matter how uncomfortable it makes you feel. One day, I hope you will look around and realize that you have found your place and are no longer a stranger. I hope you will feel more comfortable and better equipped to take on the task ahead. One of my favorite quotes by Robert Tew reads, “The struggle you're in today is developing the strength you need for tomorrow. Don´t give up.” This role has changed me and if you allow it, it can also change you.
 
 

Do you know a family who just received an autism diagnosis? Share our informative first 100 days tool kit bit.ly/100DayKit

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.