Approximately 2% of children in the United States are living with autism. (Recent data estimates between 1 in 45 and 1 in 68 children are diagnosed.) The prevalence of autism has also increased by 6-15% between 2002 and 2010. ASD (autism spectrum disorder) is a complex developmental disability that affects individuals in varying degrees. While early diagnosis and intervention can help, ASD entails a myriad of specialists, doctors, therapists, teachers, and parental supports that one can never really know until they are thrust into the thick of it. This is the story of one of those amazing parents.
When I first heard the word “autism” it felt like my world was crashing around me. My two-year-old son was not going to be the little boy I thought he would be. I had spent two years planning all of the things he would do and all of the milestones he would reach… and the time frames in which he would do so. Now, what was I going to do? I went from wondering what college he might one day go to, to wondering if he would be able to functionally speak, all in a matter of seconds.
In those early days, Myles’ therapists and doctors praised my husband and I on being such a great team. (We would later learn that a great deal of parents splinter upon diagnosis; one parent in denial and one parent fighting an uphill battle alone.) Meanwhile, I knew that my husband was carrying the team while I was hiding in plain sight. After Myles’ diagnosis, I had an extremely hard time keeping it together. (Today I can’t explain why…) I refused to tell anyone about his diagnosis, opting instead to isolate myself. I made it through my day at work only to fall apart as soon as I reached my car. This was my routine for a few weeks, until one day my husband had decided he’d given me enough time to process.
When I arrived home one evening he asked me, “On a scale of one to ten… how much less do you love Myles now?” He didn’t say it with any malice, but completely matter-of-fact. And well…when I thought about it…I didn’t love him any less. I’d have thrown myself in front of a bus for him a few weeks earlier and I would easily do the same then. Only I’d actually have to prove it. (Those of you who have hired advocates and lawyers and have sat through PPTs trying to oppose school districts, you know what I mean…and I’m sorry that you do.)
While my husband probably won’t even remember saying those words to me, I will always remember that moment as a turning point for me. That was the moment I decided to stop mourning what wasn’t going to be and start fighting for what could be.
Four years have flown by in seemingly an instant. Myles began speaking functionally at around 4 years old. He told me that he loved me for the first time as casually as someone might ask for a glass of water, a month shy of his 4th birthday. Our family has grown and Myles now has a younger sister who, though 3.5 years his junior, has been another (language) teacher for him…sometimes teaching him language that I could do without, quite frankly.
We are still trying to beat the clock every day and every birthday brings with it joy, but also panic that our window closes a little bit each year. I will always worry that the decisions I make could have lasting consequences for Myles.
Today I don’t even remember the little boy that I had planned for because I feel so fortunate to have a son who is such an inspiration to me. Over the years I have stressed and I have worried about an uncertain future, and (I hate to admit it) I have felt alone. These same days Myles has woken up with a smile, a positive attitude and boundless enthusiasm. All of which have helped him overcome obstacles most people could only dream of. I’ve spent years talking to doctors, geneticists, therapists, and teachers trying to help him be more like us. The irony is not lost on me that the world might be a better place if we were all more like him.
But I digress…After 4 years as an autism mom, people often ask me what advice I could give to a parent of a recently diagnosed child, and yes, there are a million PPT pointers and therapist recommendations I could give, but the piece of ‘advice’ I could have never lived without back in those early days was that singular moment of perspective from my husband. When everything is overwhelming and you are barely able to make sense of all of the new acronyms that are now your vernacular… ask yourself, “How much less do I love my child?”
And if I could give a second piece of ‘advice’… I would say, ‘It’s going to be OK.”
Thank you, Brenda, for sharing your story! We love you, Myles!
Photography credit: Autumn Studios