Elliott is my first cousin - my dad's sister's son. We have always been very close with my aunt and her family, and have spent summers in Cape Cod with her since before I can remember. She had kids later in life, so when she had her first adopted son, I was ten years old. In an irony that is not all too rare, when she adopted her first son, she was actually pregnant with her second. And approximately six months later, her second son, Elliott, came.
I was in love with both boys. I was at the age where I was just beginning to feel maternal, and confident and cocky enough to "take care of them." I changed diapers, I gave bottles, and I held them. I remember my sister and I fighting vigorously over who got to hold the "bubba" first.
|My sister and I with Bubba #1, David. Check out those glasses!|
Thankfully, there were two, so my sister and I could hand off. I have vivid, clear memories of holding my cousin Elliott, the younger one. He was so smiley, so happy, and made such good eye contact. He was such a joyful baby.
|Elliott at 6 months - happy, smiling, and looking right at me.|
I was young, so I don't remember the details, but I do remember my dad telling me that they thought Elliott might be deaf, because he wasn't talking. They were going to do some testing, and take him to doctors. And some time after that, he received the devastating diagnosis. I didn't really understand what that meant - back then, autism wasn't a mainstream diagnosis that one encountered, or worried about. And really, if you have never seen an autistic person, how can you really know what it means? For me, I learned about autism by being with Elliott, year after year.
At first it wasn't completely obvious. Lots of kids don't talk, and lots of kids have tantrums. But as Elliott got older, the diagnosis of autism began to take form. He learned to talk, but would not engage in conversation. He would not look anyone in the eye. He would have complete meltdowns over the most random of things - bananas, cold water, loud noises. As he grew taller and got acne and his voice grew deeper, his mental state lagged. While his contemporaries were moving on to girls and friends and sports, Elliott still loved playing with toys and watching Barney. And in any event, he had no interest in friends or girls. As Elliott likes to say, he prefers a "party of one." And now - at the age of 25 - he hasn't changed much. The toys, the shows, the tantrums - the epic tantrums - they've all remained.
I can't even begin to imagine the struggles my aunt has gone through to raise Elliott and give him all of the care that he needs. There are no breaks, no respites and no end ever in sight. Elliott requires constant care and supervision, and my aunt has devoted her life to making sure he receives only the best. She has endured a divorce, a lawsuit against the state to get Elliott the care he is entitled to, and countless aides/teachers/therapists in and out of her home on a constant basis for the last quarter of a century; not to mention the hundreds of thousands she has spent on his therapy and care. Her life revolves around Elliott - plain and simple.
But through it all, she loves him more than life itself. And so does our family. Some of our favorite all time stories are ones we call "Elliotisms." Ones where he would pick food off a stranger's plate at a restaurant, where he would walk past kids on the dock in the pond and push them off (!), where he would blow out other people's birthday candles (including mine!), and where he would eat 10 Dunkin Donuts in one sitting. We've all learned the lesson that if you don't laugh, you'll cry. And Elliott can be pretty hysterical and charming.
The amazing thing about Elliott is that there is more to him than meets the eye. He is smart - crazy smart, in that weird savant kind of way (give him a date, he'll give you a day of the week). He is emotional - he used to be obsessed with weddings, and took home a copy of my wedding video and watched it over and over again. And whenever I see him, he hugs me. Mostly out of obligation - he has been taught how to be polite and how to mimic social customs, but I also know he cares about me and feels comfortable in my presence. For Elliott, that's a small circle, and I feel privileged to be a part of it.
And then there's the recurring dream... The one where Elliott and I have a conversation. I never can recollect what the conversation is about, so I don't think it's ever been something super deep. But that feeling of able to connect with him - to talk to him, to make eye contact him, to understand him... I do yearn for that. So I suppose that's why I have dreamed about him so often, for so long.
As my aunt gets older, the inevitable questions arise. What will become of Elliott when my aunt is gone? I won't even get into detail about the pathetic state of services for adults with autism, but suffice it to say they don't exist. And so, as my aunt has done for all of Elliott's life, she is taking things into her own hands.
A couple of years ago, my aunt founded the Greengard Center for Autism, in an effort to address the needs of autistic adults. Located in Portsmouth, New Hampshire, the center offers a day program (and soon to be residential program) for young adults with autism to receive ongoing education, access to recreation, a social community, and opportunities to find meaningful work.
My aunt has recently leased a property for the center, but it is in desperate need of renovations. She has started a Go Fund Me campaign to help cover some of the costs.
I've always made it a point not to use my blogs as a means to plea for solicitations, for whatever cause, but for this I need to make an exception. This may be a small center, in Portsmouth New Hampshire, for a handful of autistic adults. But what it stands for is so much more - autistic adults need services, assistance, and support. And now, the autism epidemic is coming to a head. All of those children diagnosed in the past 25 years - 1 in 68 (1 in every 42 boys) - they will all become adults. As a community, and as a society, it's our job to ensure they are taken care of - because their parents will not be here forever to take care of them. My aunt's hope and dream is that this center will serve as a model for other communities across the country (and world).
Look, the world is crap these days. ISIS and guns and a fascist Republican presidential hopeful. But if you are willing, a donation to this campaign - no matter how small- will make a real difference.
Elliott, my aunt, and my whole family thank you!
|My aunt and Elliott, at our house this past Thanksgiving.|
Here's the link to the Go Fund Me Page - https://www.gofundme.com/greengardcenter
Update: Thank you so much for your generous donations! My family and I are truly humbled. In an effort to ramp things up, the person in the DC area who donates the most gets a night out for cocktails with me (drinks on me!). You can email me at firstname.lastname@example.org with your donation amount and email address. AND THANK YOU!!!
Like this post? Like me on Facebook by clicking here!