Who rescued whom
I talk a lot here about how incredibly blessed our family has been to have a formidable team of professionals supporting Brooke. Some are teachers, others are therapists, others still are school staff members who take the time to see her and, in so doing, become some of her greatest fans.
And then there’s Dr. Castro.
The first time we walked into his office, I knew we were in the right place. I already knew his professional reputation. I knew that he was one of the best neuropsychs in the field. I knew that his evaluations went far beyond the cookie cutter reports that we’d been handed in the past and I knew that his insights had been invaluable to hundreds of other children and their families. But that day, I saw far more than a doctor with the expertise that we needed, I saw a man with the heart that we needed.
From moment one, Brooke was “our little one.” At five, she was little indeed, and she was struggling. So were we. For the first time since beginning our journey to and through an autism diagnosis, I exhaled. For the first time, I felt like we had someone in our corner who got it. Who got her. Who got us. And who would help guide us.
Six years later, Rafael remains a steadfast presence in our lives. I’ve called him in a panic and he’s been there. From the death of Brooke’s first pet and the frightening aftermath that I didn’t know how to handle to our first inkling that Brooke had epilepsy. From rancorous IEP meetings and drawn out debates over contractual language to major educational decisions. He’s been there to offer sound advice and, best of all, perspective.
When we met not too long ago to talk about Brooke’s middle school placement, I was a wreck. He talked me off the ledge, as he does, and steered us in what I am now certain is the right direction for her. As we were parting, he told me that he’d written something and he wondered if I might read it. He demurred and said, “I’m no writer; it’s just something from the heart.” I assured him that there is no better writer than the heart.
With permission from “Teddy” and his family, he has generously agreed to share his story here. A story of collaboration, care and respect.
I’ve always loved that clever bumper sticker meant to promote animal rescue – the one that reads, “Who rescued who?” Although often I’ve wondered if it shouldn’t read, “Who rescued whom?”
I know I am missing the point, but as a non-native speaker, you are expected to pay attention to such things. I think it’s fair to say that one’s language assimilation borders on the cum laude if, amidst the accented traces of your mother tongue, you are sophisticated enough to use the elusive personal pronoun.
I digress, of course, just as my patients so often do, finding their inner reveries vastly more entertaining than that which is tangibly in front of us.
I have been working with children on the autism spectrum for over two decades now, since long before the current explosion of this diagnosis. Startlingly, some of the little ones who first toddled into my office at the beginning of my career are now beginning to learn to shave.
Not long ago, it was time for my yearly visit with a young man whom I’ll call Teddy. My first encounter with him was when he barely reached to my knee. Now, nearly twelve years later, I have to flex my arm upward to guide him as we walk down the hallway. Both his brother and sister walked through my office in diapers on those early pilgrimages. These days they assist in bringing Teddy to the waiting area while their parents deal with paperwork at the front desk.
Over the years I have seen Dad with a Beatle’s mop top and a crew-cut, sporting a goatee and clean-shaven. I’ve seen Mom as a brunette, a red-head, jet black, curls and straight, as styles changed over the decade-plus that I have served them.
The three of us know that we have more than once teared up together with unbearable sadness, but also with occasional joy. Despite the appropriate deference, our greetings every year now feel more like those you share with old friends who know the good and the not so good in your life than a mere courtesy.
Along the way, Teddy has helped to introduce a number of professionals in our agency to the intimacies of his developmental condition, one that is now common among our children. Verbal language is not his forte, but he always remembers my name (and its cultural pronunciation) and recites the addresses of all the other sites that our agency has or has had, bemoaning the fact that we should have met in the one in which we last saw each other. On this last visit, my junior colleague held tight to her papers to suppress her startle response when, in the middle of an activity, Teddy decided to serenade her with an operatic version of a children’s jingle. Not unaccustomed, I sat back and enjoyed the beauty of such irreverent unpredictability. But, as with Teddy, this refreshing trait in children with autism can have a far more challenging side.
Some of our children with autism can develop, fully out of their control, incredibly challenging behavioral problems. Increasingly, Teddy has exhibited periods of uncontrollable rage in which he aggresses indiscriminately, lashing out at those most dear to him, often followed with inconsolable bouts of sadness and, we assume, most likely correctly, remorse and regret once the damage is done.
Not even his father can safely contain the episodes that once were quietly kept private to safeguard the reputation of what is otherwise a benevolent personality. Everything has been tried for Teddy, from therapeutic support in the home to pharmacological interventions to relentless efforts on the part of his parents. Nothing seems to help. They now have a “safe room” in their home in case Dad is not home – a place to which the rest of the family can run while they call for help. Their local police officers know Teddy by name and are well-versed in how to help.
In the same manner that the rest of us prepare an emergency plan for a storm, so too does Teddy’s family has to prepare for the hurricanes that brew in their midst. There is, however, no off-season.
Soon, I knew, we would come together to review the findings of this year’s evaluation with the knowledge that Teddy’s parents had truly done as much as they possibly could have within the confines of the options currently available to them. Sadly, we will stare down the possibility of placing Teddy in a residential facility for children with similar challenges. An unbearably torturous process will then begin for his parents, who will have to consider making the heart-wrenching decision to separate themselves from their child and their child from his home.
Some will resist the process, pounding their chest piously in the name of what they believe to be least restrictive philosophies while others will ignorantly pass judgment, not having even the most remote idea of what it is to walk a mile in either Teddy’s or his family’s shoes. But anything short of this level of support will likely fail not only to allow Teddy to advance, but to keep him and his family safe.
The cost of such support, for him and for others, will take more than a village, it will take a nation and beyond. But there is nothing more worthy of our efforts. So many of these children and the adults they are quickly becoming, no matter how complex their needs may be, are talented and gifted, and go on to enjoy and reciprocate the love that they are given. It may take time, but I have no doubt that their wonderful contributions will one day soon be made plain.
Like many others who share his neurological make-up, Teddy loves elevators. Fascination is what we non-autistic folks call it, but the word really fails to capture the all-encompassing rapture that people like Teddy seem to feel for their esoteric interests. Any of the popular video sites can attest to this faithful commitment. Simply type “elevators” into any search engine and myriad videos will come up, each with thousand of views, a testament to the ever-growing ranks of folks like Teddy, searching for ways to quell their hyper-focused insatiable curiosity.
The videos themselves are fascinating. The perspective of the filming is as unique as the content. You never see those who provide the footage, but you hear their amazement at the beauty that they perceive while adoringly rubbing their fingers over the indentations on metallic plates of names like Thyssen and Urbis. A sacred message seems to be conveyed through their tender movements, a message that the rest of us cannot yet understand
Teddy and I have a secret covenant: he obliges to my requests to perform what I am sure he sees as absurd attempts to ensure his progress and I take him on rides in the elevator in our clinic building. This week’s visit was no different as we paid homage to our long-standing tradition. We went, as we always do, for a ride. I have no doubt that the rest of the story will test the limits of my credibility and some of you might choose to interpret it as literary largesse, but I was there. I saw it, I heard it, and most poignantly, I felt the waves of awe on my own skin.
After riding for a while, Teddy and I had visited the top floor, the lobby, the ground level parking lot, and the lower level parking lot. It was clear that Teddy knew the subtle differences between the two lots from prior visits – nuances that I had forgotten and, tragically from his perspective, could not fully appreciate.
At one point, he got on his hands and knees to check the elevator’s safety inspection certificate, which reminded me that none of us do that as a matter of course when we venture in these contraptions. His lack of reactivity made feel secure that the dates and seals checked out with him and we were both safe. Then I could no longer resist. I asked the question – the accumulation of years of curiosity about Teddy’s infatuation and that of all those other little ones of mine whom I have taken for elevator rides for all of these years.
“Teddy, why do you like elevators so much?”
We waited out his usual latency until he responded, which he did without looking at me. He was seemingly still, but I swear I could see him channeling his entire being into living that exalted moment to the fullest. Normally, I would simply attribute his lack of eye contact to autism, but I felt that on this occasion it was more – it was his attempt to spare me the discomfort of being clued into a self-evident but overwhelming truth.
“Because they have their ups and downs,” Teddy declared with silencing aplomb.
Nothing else was said. There was no need; on either his part or mine. As we walked back through the lobby, I had one more opportunity to guide him by the shoulder. I don’t know if I will get another one, but this one will endure indelibly in my memory.
Weeks later, I met with Teddy’s parents again with the task of finding an appropriate placement for him, one in which he could truly thrive. I told them what I firmly believe: that residential care in no way represents an ending for him, but instead, if done right, can and will be a wonderful beginning. Right now, Teddy needs more than he can, or any child could, get at home. He needs a place that will allow him to safely blossom. To live the ups without having to fear what might happen in the downs.
They left that day with a sense of direction and I was left with hope that their beautiful family would all find their way together, Teddy shining his light and his abiding love for elevators, and for them, long into the future.
And that’s when it came to mind. The bumper sticker.
Who will rescue whom?
Dr. Castro is the executive director of the Integrated Center for Child Development (ICCD). He received his doctorate in Clinical Psychology at Florida State University. He had a staff appointment at Children’s Hospital, Boston as a supervising psychologist for a number of developmental clinics including the Center for Autism and Related Disorders (CARD) and the Preschool Clinic. Highly experienced in the evaluation of a wide range of children, Dr. Castro specializes in the assessment of preschoolers, children with developmental disabilities and Spanish speaking children. Originally from Spain, he is bi-lingual and the father of four young children. Dr. Castro founded ICCD.