“Do with, not for”

I remember when I first started to get my head around intervention.  It was the night after my Kiddo’s sedated hearing test and I knelt by his bed in the dark room, rocking and sobbing, unable to wear out the frantic energy that I’d been running on since receiving the diagnosis that day.  My child had auditory neuropathy and combined with his cortical visual impairment, he was deafblind.  We had a formal diagnosis for what we had always known.  In the darkness, silent except for my crying, I couldn’t explain why the scientific naming of what I already knew made such a difference.  I don’t remember how long this lasted, but it felt like an eternity as I went through my own childhood memories, trying to find ones that did not include either visual or auditory stimuli.  I do remember when it ended.  A little body propelled itself out of bed and my son climbed into my lap.  This little boy, who couldn’t see me and couldn’t hear me, had felt the vibrations of my rocking and wished to capitalize on a snuggling opportunity.  Once the surprise passed, complete with minor trepidation over whether my mini-human would be in agreement that it was definitely time to be sleeping, we rocked together.  I remember the smell of baby shampoo from the head nestled into my shoulder, the slight drag of his footie jammies on the carpet, the constant beat of his heart against my chest, and, gradually, his tightly hugging little arms loosened as he drifted back into sleep.  I settled him back into his bed, his blankie clutched in his arm, the blankets (velour, corduroy, and fleece) pulled up to keep him warm, his head on the slippery satin pillowcase that he loved.  That night stands out as one of my most tactile and vibrant memories.

Why do I share one of my most personal stories about living with deafblindess?  Because in a lot of ways it was my “light bulb” moment for intervention: do with, not for.  I learned from my child.  Whether he could name it or not, he had experienced my grief through its tactile process: from the initial moist, sobbing, shallow breathing, heart racing, body rocking intensity to the slowly calming, and finally deep breathing, if slightly sniffling moments.  On the other side of this experience, he was the same beloved child that night as he had been before his hearing test, but I realized that he had still learned about grief from all the non-auditory/non-visual elements of my grieving process, notably for a child that had never been part of either my son’s or his mother’s life.  I was part of the meaning making for his learning about grief/sadness; a memory that I cherish and that changed my understanding of both Deafblindness and experiential intervention.

The beliefs for intervention are fundamentally tied to accessibility and equity.  As a mother of a Deafblind child (cultural identification), I wholeheartedly subscribe to the belief that my child lives a difference in experience, but not a lesser experience.  Being the parent of a child that lives outside the milestones and social norms?  It is terrifying, it is difficult, it is sometimes sorrowful, it is freeing, it is unique, it is understood only by those that live it, it is tactile, it is attention to detail, it is joyful, it is motivating, it is an opportunity for constant learning, it is my life and I would not change it.

Intervenors are a key part of this lived experience, both for my son and for myself.  When people ask me what I look for in an Intervenor, they are often a bit surprised by my response.  I do not tell them about the character traits or my educational expectations rather, I tell them that I generally look for prominent tattoos.  Yes, I know that sounds superficial and completely irrelevant, but it’s not.  I am looking for individuals that are comfortable with not fitting society’s expectations and that are comfortable being stared at and will be unfazed.  Because, let me tell you, my child’s exploration and information gathering guarantees stares and onlooker whispering/questioning.  If that is an uncomfortable experience for the person supporting my child’s meaning making, then that’s not the right fit.  I want the person supporting my child’s exploration and learning and meaning making to be okay with living outside the milestones and social expectations.  I want someone that is unfazed by discomfort because how my child learns and gathers information can be uncomfortable and generally seems to involve a lot of dirt, water, sticks, leaves, and all kinds of griminess.  For example, when learning about drain systems and where all the water goes that doesn’t get stored in the rain boots (note to self, always store rain boots soles up or risk a moist surprise when stepping into them!), he gets into the puddle or gutter, down on his hands and knees, feeling the water running down into the drain spout, exploring as the water pulls twigs and leaves and little bits of gravel into the drain.  I want my child to have every opportunity to learn, to have his endless curiosity encouraged.  He deserves to have his fascinations and interests supported; even if I wince every time I watch him walk over his Legos with his little bare feet, screaming with excitement and amusement at the prickliness of it all!  What I look for in Intervenors are people that look for the multi-sensory opportunities in every experience; the greatest Intervenors are those awesome professionals that take as much pride in supporting my son’s experiential learning as he delights in the process.  I am very fortunate to have had a number of truly exceptional Intervenors in my son’s life and I am profoundly grateful for both what they have given my child and for what they have taught me about who my son is: scientist, artist, Lego-fanatic, Google Maps reading mastermind, daydreamer, friend, stubborn over-achiever, and genuinely caring mini-human.

Elizabeth Fennelly
Elizabeth Fennelly is a mom, paralegal, social worker, and lifelong student (sometimes in the formal education system). She is extremely grateful to have the privilege of serving on the boards of the Canadian Deafblind Association - Ontario Chapter as well as the Ontario Association of Social Workers - Eastern Branch.  Her greatest pride is in being Shawn's mom with its opportunities to support Shawn's meaning-making and advocate for equity.