Ten years ago today, my son, Elliott, was diagnosed with autism. September 29, 2003, I walked out of that clinic holding my little boy’s hand and a piece of paper that would forever change our lives. I still remember what he was wearing (light brown corduroys and a light-weight earth tone patterned sweater), and I still remember what it felt like parking our van that lovely sunshine filled morning, and how the leaves crunched beneath our feet as we walked into the building. I remember the anxiety and pain that I felt from not knowing for certain what we were dealing with, and yet, fearing what the certainty of knowing might mean. I remember with clarity exactly how the clinical team worded it, and how I felt a mixture of relief & heartache & discomfort & sadness & anger & love. I remember, even in that moment, as I tried to compose myself and to keep Elliott entertained in a small space, that I was grateful to the evaluation staff for what must be a challenging job to day after day deal with Mom’s like me. I remember walking out, holding Elliott’s hand, crunching through the same pile of leaves, and feeling like everything was somehow different, and yet, somehow not. I remember the sounds that Elliott made on the drive home, and wondering if I would ever get to know what his voice actually sounded like. I remember wondering why someone would ever dream up a name like PDD-NOS, and what the heck those initials meant, and would I ever really figure it out? But of all the memories I have of that day, what I remember most clearly was feeling so vividly what being Elliott’s Mom was really all about, and a sense of purpose like none before. 10 years later, I feel the same way.
Wow – a decade of autism. That’s still hard to wrap my head around. In some ways, it feels like it was just yesterday that little 2 year, 11 month old Elliott & I had that appointment, and in some ways, it feels like forever. Over the past decade so much has happened, changed, evolved, morphed, gone-away, reemerged, and stayed the same that it’s impossible for me to even begin to tackle the enormity of the impact of autism on our family in one blog post. Can’t do it. Wouldn’t do it justice. Blah, blah, blah (just had to throw that in there as it’s one of 5th grade Henry’s favorite sayings, so when you read it, think cranky, snarky 11-year-old.)
This time of year is always difficult for me – as the anniversary of Elliott’s diagnosis is just a “trigger” for me. Even after a decade, it still hits me in ways I wish it wouldn’t, and my feelings of sadness for what could have been, and what things won’t be cloud my gratitude for what we’ve done despite challenge, the many accomplishments we’ve worked so hard to attain that at one time seemed impossible, and most of all, compassion for the struggles we all face in the world of autism and beyond. Admitting that is hard, because I work hard at being a glass half full kind of person (while never losing my slightly pessimistic, inappropriate edge) and most days I feel grateful for the heap of good stuff we have to celebrate, but I own that this time of year brings back some painful feelings that can overwhelm the good stuff.
So instead of focusing on the fear and the scary stuff that we felt so consumed by 10 years ago, let me share some other things that I remember from the last decade.
I remember starting home-based behavioral therapy, and that 3 months after beginning his sessions, Elliott went from speaking approximately 10 words (one of which was clock without the “l”) to testing in the low average range for speech. And I remember the very night that Tom & I tucked him in and told him we loved him, just as we did every night, except that this night he said “Mom, I love crackers” and how I cried and cried because I knew, based on his true passion for crackers, that he really understood what love meant (later, he told us he loved us too – priorities, you know).
I remember the first time Ada let my animals in the barn during her imaginative play program, and while perhaps a bit reluctantly, allowed me to have my pig fly from the roof of the barn while her horse shopped at Old Navy. Then we (as in our animals) shared a snack, and talked about our respective experiences. Now I’m invited to play all the time, and even got to dress as old, out-of-shape Robin to her Batman last Halloween. Remembering how unnatural it felt in the beginning for her to play for 15 seconds when she disliked it so intensely, and realizing how it’s now one of her favorite things to do and such a huge piece of who she is seems surreal.
I remember the very first full-length movie we attended (successfully) as a family – “Toy Story 3” – free from meltdowns, excessive trips to the restroom or exceptionally loud whispering “is it almost done”. Instead, we had harmony, laughing and “getting” what was going on in the movie by everyone, and shared joy amongst the siblings on the way home about their favorite parts of the movie. Ok – the popcorn and twizzlers were also kind of awesome. Now, there are many more movies that are options for us, and hopefully, this only continues to evolve, but we still all love to watch “Toy Story 3” once in a while.
I remember when Elliott told me, after watching “Toy Story 3”, that it hurt him when Andy left for college, but not hurt him like a scratch on his body, but hurt inside his body, and I recognized that he was holding his heart, and describing his own empathy in the most eloquent way imaginable and that his world changed that day in a beautiful way.
I remember the hundreds of professionals, educators, psychologists, medical professionals, other families with autism and beyond that have made such a profound difference to our family over the last decade, as not only does it take a village to raise a child with autism, it takes an exceptionally large, talented, patient, and compassionate village. We are all better people for having this amazing group in our lives, and while I would do anything to take away the struggles that autism has caused for my children, it has been a true gift to learn from them and with them in this journey, and I feel so grateful for the many connections/friendships/lifelong memories we’ve made together.
I remember to appreciate the small stuff because in our world – learning something like not having to be the person to open the garage or have your hair in the exact same pony-tail style every day is no small feat for my people. Recognizing the thousands of hours that can go into accomplishing a new skill or task that most learn naturally is easy to take for granted if you can. But the sense of accomplishment for achieving something that has taken months or sometimes years is overwhelmingly cool when viewed from this side of it. When E made it through a whole check out at the grocery store without staring at the register and instead bagging, and then told Helen (his favorite check-out lady) “I have autism, and not staring at the register is really hard for me, but I did it!” well, how can you not crack open a Sprite in celebration!
I remember Henry starting Kindergarten, being so shy he barely spoke for 2 months, and then coming home one day and announcing “how am I supposed to find a wife in Kindergarten when girls don’t kiss?” Ok – that’s not really a decade of autism memory, and yet it is. Because Henry is a champion of champions in the sibling department, and when Tom & I worried that he and Elliott would never have a true brother connection, we sent them off to summer camp with the most amazing counselors around and they came back a week later wearing respect beads and the ability to appreciate one another’s strengths and challenges like never before. Life. Changing. Stuff.
I remember cousin dance parties, trips to the Dells, gradually becoming more and more able to fully engage in family holidays and gatherings, and the joy our trio feels taking part in their community and the connections they are now making more and more on their own. This is scary, sometimes hard, and in many ways, new for all of us, but it is yet another example of how far we have traveled over the last decade. Wow, I think this makes me most proud. Sure, we could refrain from asking Great Grandma how much longer she’ll be able to walk up the stairs because she’s so old, but the excitement they feel about getting to see her, and the fact that she loves them exactly as they are is kind of above and beyond awesome. What could be better than that?
10 years ago, I could never have imagined that we would ever get beyond being scared, overwhelmed and isolated. But if we’ve done anything well on this autism journey, I feel like we have learned to face our fears, and put one foot in front of the other, even when the ugly stuff feels overwhelming. Likely, there’s a “Journey” song to help you through those times, right? (The E man kind of loves Journey).
So – here’s my goal: To spend the next year focusing on a few of the lessons I’ve learned from my first decade as an Autism Mom in hopes of inspiring some of you to think about your own journeys, perspectives and lessons that you’ve learned along the way (autism or not). My experiences are unique to our family, and the joys and challenges we face may be different than yours, but my guess is we all have more in common than not.
But for now, I’m off to start making memories for our next decade. No doubt, we will have our share of awesome, awkward and unusual experiences, but they will be our awesome, awkward, unusual experiences, & I’ll gratefully accept them just as they are . . .