Apr 23, 2019
By: Kristin Leger
Kristin is a wife and mother to four boys. She enjoys running, traveling and spending time with family and friends. She works part-time at her family’s interior design business and husband’s law firm. However, her greatest effort and hope is to raise her sons to be respectful, hardworking and kind individuals.
In November of 2009, we had a family birthday party at McDonald’s for our son, William. William was born 7 weeks premature three years before that party in November of 2006 and had been developmentally delayed since. It was at that birthday party that my husband would be the first to acknowledge the possibility of a developmental disorder, more than the typical premature delays. William (we call him Will for short) was not playing with his cousins nor did he seem excited about any of his gifts.
He was there but not the way other kids his age were there. I wanted to live in denial of the possibility but, despite those feelings, I decided to ask the pediatrician at our upcoming well check.
What did that mean?
I didn’t know all of the implications of that diagnosis but I did know that the very utterance of “autism” rocked my world to the core. I was scared, upset and I didn’t think any of it was fair. When I found out I was pregnant shortly after, I couldn’t help but fear for my unborn baby.
I found all of the information I possibly could including additional diagnoses from various doctors/clinics, the “First 100 Day Kit” from Autism Speaks and a list of opinions on therapies that could be beneficial.
And that began my experience as an “autism mom.”
I was keenly aware of the signs and differences in my child and I spent time researching therapies for Will. It was my responsibility to do my research and figure out how I was going to handle my new reality. All of this while trying to be present for my other three boys plus maintaining a healthy pregnancy caused me to feel overwhelmed altogether.
I was mentally exhausted.
William was difficult. He was not only a toddler (who that alone can be hard) but he was also nonverbal, not potty-trained, and completely unaware of danger. He threw tantrums, had difficulty eating, struggled to sleep and didn’t know how to connect with his family and friends.
Over the next several years we became more familiar with what autism looked and felt like in our lives. Autism was different for us than it is for others living with it. We became involved with an insurance mandate reform, ABA, Floortime, Occupational Therapy, speech therapy, hippotherapy, camps, family training, sibling camps for our other boys, and every resource available that we felt could help us.
Our family ran races promoting autism awareness and did our part in promoting the conversation. We have been and are involved on a daily basis with this world (though at times, pull back a bit to readjust).
Will is now 12 years old. There have been too many tears to count over the past 10 years. There have been moments so hard, I have found myself resenting autism and what it meant for Will and my family.
Amidst all of it, we have experienced little pieces of pure bliss. I’ve learned so much and I’m still learning every day.
What I Wish I Knew 10 Years Ago
It IS going to be okay and you will find a “new normal.” Autism is not a curse or punishment but, in fact, a blessing and something that will help each member of your family learn to be more compassionate of others.
I AM strong enough to handle autism and the hardship that comes along with it.
There will be good days and bad days, and also every other kind of day in between. You will learn to be flexible. You will become stronger emotionally, but know that it IS always ok to cry. It’s ok to become a “Mama Bear.” It’s ok to advocate for your child. You are the only one that will. He is counting on you.
There will be people that will help guide and educate your child. There will be doctors and therapists and counselors — all of which will help your child in some way, but nobody will care the way you do…or as much as “I” do.
He needs you—and YOU need him.
No amount of wishful thinking will change the diagnosis and who Will is meant to be. He is a beautiful boy the way he is who doesn’t need changing, only extra understanding.
Slow down and enjoy him. Enjoy his innocence and love. Take advantage of his cuddles before he gets too big. Focus on the little moments. Every small victory. Enjoy his childhood.
It will be hard but try, try, try to find the joy. It is there.