One of Elliott’s favorite songs is “Copperline” by James Taylor. It’s not one of his better known songs – its post treatment 1990’s stuff, but for some reason, it connected with Elliott several years ago. Sure, he loves his share of Katy Perry, Lady Gaga, & especially Sara Bareilles, but even amongst the more current stuff, he often requests “Copperline”. I like that song too, as it is the story of a man revisiting moments from his past and his youth. I can relate to that a lot as certain smells or songs will take me right back to different times and places in my past, i.e. certain dirt smells remind me of my summer bean field walking days, or any “Supertramp” song reminds me of being in my high school after hours painting banners with my fellow Cheerleaders. I don’t know what kind of memories are forming for Elliott (though I’ve no doubt they will be fascinating to hear about in years to come), but for now I’m glad we share a common love of music.
It feels like everyone in our family has been in a reflective mood as of late, and with good reason. Last weekend, we hosted a “Celebration of Elliott” party at our house to mark the end of his home-based therapy journey, and did our best to include every therapy related person we’ve ever had the good fortune to work with. Wow, that’s a lot of people considering we started home-based therapy for Elliott more than 7 ½ years ago.
Technically, Elliott’s therapy journey ended in late June, and perhaps we should have hosted a party then. But let’s get real – it was me that was not yet ready to celebrate because I was scared out of my mind. This is one of those “apple doesn’t fall far” situations as change is very difficult for us – especially me. For our family, starting home-based therapy was life changing and life-saving. Even now, I can’t bear to fully go there, because it is just too painful, but suffice it so say that Elliott struggled tremendously following his diagnosis in September of 2003.
What I remember, most of all, was the complete isolation we felt. We quite literally could not leave our home for fear of Elliott hurting someone. And in our home, it felt like a war zone. I remember crying all the time – it was completely out of control, and in the beginning we were so ashamed and embarrassed by what was happening in our world, we felt that there was no one we could dare share the deepest and darkest ugliness with. Slowly, our world just kept collapsing around us – we got kicked out of a playgroup (no judgment – they were protecting their own children, and I can’t say I would have handled it any differently had roles been reversed), we could only venture out to a park when no one else could possibly be there, and if someone showed up, we had to leave ASAP.
The most painful stuff is still too raw for me to revisit for more than a second – I just can’t. Maybe someday I will, but I’m just not certain that’s a place I’ll ever be able to go again. It was our rock bottom – and because Elliott & Henry (Ada was not yet born) have no memories of it, Tom & I need to thoroughly and thoughtfully consider how much we will ever share with them as they become old enough to understand and contemplate their early days. It is enough to say that while Elliott was the person with an autism diagnosis, we were all hurting, and we needed help.
Cue the music . . . we started home-based therapy, and for us, it was a life-changing miracle. As long as I live I will never forget the first day that our new friends, Sheryl & Bill, came to visit and to do intake data on Elliott. They were so kind, but for me, it was humiliating. I remember collapsing on my bottom step and sobbing as I watched my beautiful little angry boy chase Sheryl, screaming & hitting everyone & everything he could – climbing, jumping, biting, grabbing knives, etc. It was a kind of raw pain that I hope I never feel again as our worst nightmarish hell was exposed. We’d gone to great lengths to keep our world private and hidden, and now we were inviting people into our home to witness the chaos, and it was unspeakably painful.
To her credit, Sheryl knew something about me and my kind (slightly off-center autism moms), and intuitively knew how I felt and what I needed. She sat down next to me, and told me “You’re doing the right thing – it’s a lot easier dealing with these challenges at 3 than it is at 13” – and she was right! Within 3 months, our attractive, yet feisty little boy went from over 100 aggressions a day to less than 5 a week, from 7 spoken words (including clock without the “L”) to testing in the low average range for his age, and became toiled trained! Life. Changing. Stuff.
It was this flood of feelings that I kept returning to when, now, nearly 7 years later, our friends from the Lovaas Institute sat down with us to chat about slowly fading Elliott’s home program. To their credit, they were incredibly patient and understanding – even when we didn’t deserve it. While Elliott still faces his share of challenges, there are a variety of alternative ways and services to help him outside of home-based therapy. He had told us, for a year or more, in his own way, that he needed to be done with therapy, and to move on with his life in new and different ways. Looking back now, I think everyone heard him except me – his own Mother. In many ways, I was still that Mom, sitting on the bottom step and sobbing – I just wasn’t ready to let go of what felt like a lifeline.
Thankfully, Elliott was ready enough for all of us! He handled this transition with grace, excitement, and an eagerness for lies ahead. He had a terrific summer – as did Henry and Ada. We did things we’ve never been able to do, and had some great times. The collapse of our world that I had so feared never happened. Sure, we’ve had our share of ugly days, but that’s just life – right?
Finally, as the end of summer neared, Tom & I sat down with Elliott, (on the red couch, of course) to talk about what it would be like to have a “Celebration of Elliott” party. We told him how proud we were that he had accomplished so much, and that we were grateful to have had so many amazing “big friends” over the years that had helped our family. We spoke about how it might feel to see some people that he had not seen in years, and what he remembered about each individual. At first, he was mostly interested in planning the menu (cheese balls, hot tamales, Pizza Hut & licorice), and placing an order with Oriental Trading, but as the weeks passed and the party neared, we would take the invitation list out each night and fondly remember someone we looked forward to seeing.
Alas, party day arrived. It was a beautiful day, with lots of sun. Elliott’s Pizza Hut order arrived on schedule, and the Inflatable Cactus Limbo kit from “Oriental Trading” was inflated and ready to go in the backyard. At exactly 5:00 p.m., when the party was due to start, Elliott was out in the driveway, wanting to know where all his big friends were. He was concerned no one would come to his party. Just another opportunity to chat about social skills, yet, he was also making sure no one ate cheese balls before party guests arrived. Ever the rule follower . . .
Soon, the house was filled with people, and as we greeted each person, I was fighting back tears. To put into words the impact of each person we’ve had the great pleasure of working with is not possible. To say we have gratitude just seems so hollow. We have all been through thick and thin together. I didn’t expect my emotional reaction, and despite a margarita, my head was spinning with memories of car washes, over-correction, learning to read, finally finding a way to teach categories that worked, peace-out, playing jail, truly bonding with siblings, family fun nights, and a million other things all at the same time. It was amazing and crazy and most of all a terrific reminder that there is so much good in our world.
Elliott was amazing. At one point, he ran up to his room for a few moments to collect himself, and then reappeared, chatty & excitedly offering Pizza Hut to everyone. Though at times, it was just a lot for him to take in, we could not have been more proud of him. He was genuinely excited to see people, and is still talking about conversations and moments he enjoyed now, more than a week later.
And so it is that just like Elliott, I find myself reflecting on so many of our amazing experiences throughout this crazy journey. 8 years ago, this month, Elliott was diagnosed with an autism spectrum disorder, and we had no idea what his future held. Today, it feels more and more that Elliott is in charge of his own destiny. That’s pretty awesome considering where we started all those years ago.
As I’ve said for many years, if it takes a village to raise a child, then it takes an amazingly talented and large village to raise a child with autism. The “big friends” we’ve had along the way are our village, and while there may never be a way to say “thank you” adequately, perhaps Elliott having his own hopes and dreams and working hard to make them come true will come close.