In the book Far from the Tree (about how families accommodate children with physical, mental and social disabilities and difference) there is a section on children with multiple disabilities. A mother talks about having her adult child with complex physical and mental disabilities who went into a group home. Her son was provided adequate care – competent and conscientious in keeping him well and safe – but she didn’t feel that there was anyone there who actually loved him.
When I first read that it really stuck a chord, even though we were years from dealing with adulthood. And when I heard Andrew Solomon, the book’s author give a reading, I had the chance to ask him about that passage during a question and answer period at the end of his reading. He agreed that it was powerful and heartbreaking. I cannot recall his exact response, only that it was empathic and yet he had no real answer to this dilemma. And I was left still adrift in my heart imagining that world without love.
Years later now that V is an adult and we are just starting to look at potential homes, that question is omnipresent. We are looking at two homes with openings for one more individual. The agency that manages the houses has a good reputation, and our lawyer encourages us to be proactive as we tour and meet with them. Yes, it may be well managed, there may be adequate competent staff who will help take care of him and hopefully encourage him to keep increasing his independent living and social skills, but who is to say that V will be loved?
And V, with all his challenges – both the ones I have shared here and other worse ones I prefer to remain private – is still, in our eyes, eminently lovable. For all the difficulties and delays he has, he is a charming young man, filled with intelligence and unbridled joy at the simplest things. Even at times when we are too exhausted to be fully engaged, our home is filled with love for him. And who is to say that he will get that any place else?
We feel that he is loved at school, and for that I am enormously grateful. Actually I can’t say for sure that he is loved but he is celebrated for who he is. (The school, after all, is called Celebrate the Children.) He is embraced and accepted. His strengths are emphasized over his deficits.
Since school and home take up most of his time, we know he is in good hands, that he is appreciated for the unique person he is. And when he’s not, like out in public where people can be judgemental, it’s a small part of his life, and besides, it only bothers me. He couldn’t care less.
V is very intuitive. We always describe him as having strong receptive language and limited expressive language, meaning that he cannot talk beyond letting others know his basic needs or mood. I want water, I am happy. Yet he understands so much. We are quick to shift our pronouns from “he” to “you” when we realize he is listening to let him know he is in on the conversation. Because who knows? Intelligence is a difficult mysterious thing to measure. That is one of many lessons I’ve learned on this journey. We all have some intelligence, whether it’s musical and mechanical like V or verbal and analytical like me. V and I test at extreme ends of the continuum, so it is humbling to acknowledge and appreciate where and how he shines. There is no way of assuring that others will see those strengths.
And there is no way of knowing that someone will be loved, in any circumstance. The most loving couplings can come to a bitter end, friendships fade away or fall apart, love is not a guarantee for life. And yet don’t we all want to at least start with, and strive for love in our lives, in some form or another? Whether it’s a romantic partner, or dear friends or family that are woven into the fabric of our lives? Don’t animals bring us great joy and love? There are so many ways to have a world with love in it. We often don’t appreciate when it is there, especially if we don’t have typical family circumstances.Yet most of us are lucky enough to have love in our lives.
So much of the process of getting proper funding for V’s future was emphasizing the negative. Long interview sessions where we were pulling out every painful episode, downplaying all the ways that V has been relatively stable this last school year. Having to tell his school case manager that the disability agency didn’t want to hear about what a great year he was having but rather about the few incidents where he exhibited behavior with which to judge him, to lower his scores and thus receive much needed funding for his future we would never receive otherwise. It was a brutal multi-step process that left me sad and depleted.
So how to shift to the positive, to move forward even though everything, even love, is unknown? I have faith that we can, with due diligence, find that good fit in a residential setting. We can only hope that the direct service professionals (DSPs) who are with V when he is not in school or a day program will be kind, and more that they will, if not love,at least grow to like V and see his charms. But that is not a requirement, and it is so hard to know although I’ve seen many more instances where caring bonds form than not. Many DSPs, whether working with seniors or adults with disabilities, grow fond of those they help, they get to know them, become attached, feel invested in the well being of those who they serve.That is the best case scenario and it happens all the time. Yet what if it doesn’t? Is there a way to know?
Nothing is certain. We just have to hope that our lovable son will be treated well, that he will be shown kindness and respect, and if we are lucky, love.