When the month of April comes to a close, along with Autism Awareness Month, I always feel a sense of loss. Our family is the 1 in 59 affected by autism, and our journey doesn’t stop at the end of the month but continues 365 days a year.
We want to make autism awareness a priority in our community, every day. I am incredibly private about my family and personal life, but I knew I would have to come out of my comfort zone in order to give a voice to our families and promote love and inclusion.
My son, Jack, was diagnosed with autism 11 years ago, at the age of 3. This was before autism was featured on TV shows, splashed across magazine covers and in newspaper headlines. In fact, I was so blissfully ignorant that my primary exposure and knowledge had come from the movie “Rain Man.”
In order for me to get through our story without turning into a puddle of tears, I decided to write a letter to him and outline our experiences on our personal journey with autism. It also gave me the opportunity to give a truer picture of the challenges of autism and the effect it has on the entire family.
My hope is that our story might speak to one person and encourage empathy and acceptance for those who don’t fit the “typical” mold. I have witnessed the evolution of the autism movement over the past 10 years. We’ve gone from awareness, to acceptance and, now, inclusion. The next decade might even replace “disability” with “neurodiversity.” Variety is the spice of life, right?
As long as I can remember, all I ever wanted was to be a momma. You made that happen on Aug. 28, 2003. From the moment I saw you, I was deeply and profoundly in love with you.
By nature, I am a planner. I like to know what’s happening and what to expect. I had big plans for you, too. You were my whole world, and I dreamed of all that you would do and accomplish.
Nothing can prepare a parent for an autism diagnosis. I sat next to your father and heard the words coming out of the doctor’s mouth but was unable to absorb our new reality.
For the next six months, I lived in a state of constant anxiousness and exhaustion. I experienced sadness so intense that it was difficult to catch my breath. I had to accept that something much bigger than us would determine your path, no matter how much I had planned.
Your diagnosis came at a time when autism wasn’t as understood or talked about, especially in the area where we lived. I was terrified and unsure of what to do or how to help you.
We spent our savings that first year getting you every therapy and intervention we could get our hands on. The road was tough and lonely, and I questioned every decision that I made for you. We were denied coverage for your services, so we sold our home, I left the children’s shop I had opened a year before, and we set out on a journey that would change the course of our lives.
You were blessed to spend your elementary school years at Briggs, where you were accepted, nurtured and loved. I know the past two years of middle school have been tough, especially growing apart from your two childhood friends who were by your side from kindergarten through sixth grade. It breaks my heart to think you are missing out on all of the fun experiences of middle school, or that you feel excluded or lonely. All I want is to wrap you up tight and protect you like I could when you were little.
The past year has brought many changes and challenges for our family. You were my inspiration to leave the safety of a secure job with Habitat for Humanity and take the huge leap of faith to join All 4 Autism. Thank you for giving up your playroom for our first make-shift office. I was so proud of how you and Sammy stepped up and helped with Max when I was spending long hours at the office, often working seven days a week.
I made a promise to you years ago that if I ever had the opportunity, I would open a place where families like ours could receive the support and resources they needed. The autism journey can be reclusive and overwhelming, and we wanted to give our local ASD families a soft place to land, an ear to listen and a hand to hold.
On April 25, 2017, we opened the Autism Resource Center of the Pee Dee, the first and only in our region. Watching you finally have “your moment” took my breath away. I see you, Jack. I see how hard you try and how much you want to connect. The strides you have made, the challenges you have overcome and the impact you have had on our family is a true testament to God’s unfailing love and grace.
I’ve told you a million times how much I love you, but I also want you to know this:
>> 1. You are more than your autism. God made you in his image, and that makes you perfectly made. Autism is a part of who you are but doesn’t define you.
>> 2. You are worthy. God will put people in your path who appreciate and value your friendship. You have so much to offer, and someone isn’t doing you a favor by being your friend. Your friendship is a privilege, not a favor.
>> 3. We love you just the way you are. It takes courage to be yourself. Continue to follow the beat of your own drum. Embrace the spectrum and the gifts that come with autism that make you unique. Don’t allow others to dim your light. Seek out and surround yourself with secure, honorable people who value and accept the differences in all God’s creatures.
>> 4. Most important, we are proud of you. While your peers were in play groups and joining soccer teams or bonding at summer camp, you were spending countless hours in ABA, OT, speech and various other therapies. It broke my heart to see you miss out on the typical childhood experiences that we take for granted. I have watched you overcome more obstacles in the first 10 years of your life than most of us see in a lifetime. For that reason, you are my hero. I pray that you will keep God close and seek purpose for your life.