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  • About Holoprosencephaly
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    Community Voices

    Why No One Understands My Sister's Disability

    My younger sister has four diagnosed disabilities, autism and #Holoprosencephaly being the primary two disabilities of her diagnosis and playing the most significant effects on her life.

    Autism is a commonly known neurological #Disability that affects mainly social development and commonly physical development with gross and fine motor skills. Autism is lifelong, nonprogressive, with main struggles being communicating, forming relationships, and using language and abstract concepts (for example, sarcasm). Autism is a spectrum disorder meaning it affects each person differently with different circumstances and consequences.

    Holoprosencephaly (HPE) is another neurological disorder where the brain doesn’t develop into two separate hemispheres during pregnancies. Since the brain doesn’t fully form, there are commonly facial defects in the eyes, nose, and upper lip (and can also be accompanied by other disorders like cyclopsy). Other than these facial defects, common side effects of HPE also include seizures and mental retardation. Since facial defects are a trademark of this disability, her disability is often seen right through.

    Growing up, it was never easy going out in public with my sister. During the phase of my imaginary audience, it wasn’t hard to believe everyone was dealing a critical amount of attention on myself, my sister, and the rest of my family. Maybe they were, maybe they weren’t.

    Firstly, she was super clumsy due to her hemiparesis diagnosis, meaning one side of her body is stronger than the other along with her generally poor motor skills from her fourth diagnosis which covers an umbrella of disabilities being Global Developmental Delay. This made her clumsy, she’d trip and fall a lot, she didn’t start walking until two and a half years of age, and she wasn’t very coordinated in general. That part was tip of the iceberg since the bigger part of her diagnosis focused on poor behavioural and social development.

    It was mildly embarrassing when I felt strangers stare at us when my sister would be having a melt down. We’d get weird looks because my sister was a grown child, and bigger than her age, but causing a scene in public like a toddler. This wasn’t easy to deal with as an adult but especially since I was a preteen with my own problems as well. That was one example of when my sister was judged based on assumptions she was neurotypical, it was never easy to explain she had a disability because telling anyone that she has autism isn’t being entirely faithful since some of her HPE symptoms contradict those of autism.

    Sometimes these things were as simple as getting looks fro people who didn’t understand why my family got to park in disability permit spots because everyone in our family looked normal. In reality, we were granted the parking pass because my sister was deemed a flight risk. Or in odd occurrences like when we went to the Toronto Zoo and surpassed the standard admission line because my sister got a discounted pass and didn’t understand waiting in line because she was young. We got odd looks from people because we didn’t have to follow standard admittance and got to go in easily on a busy day. It was all the judgemental glances my family got, in public I was often embarrassed. I didn’t like being centred out and in my youth, I always preferred to fade into the background especially after the negative attention we got with my sister.

    She didn’t have it easy at school either. In the beginning, the school refused to give her an educational assistant (EA) until they were provided a formal diagnosis despite her obvious struggles. She wasn’t potty-trained until five and continued have accidents up until second or third grade.

    With the help of a friend, she helped my mom find the proper resources to find a diagnosis for my sister after noting the early childhood similarities between my sister and her autistic daughter. She helped my mom recognize that my sister’s development wasn’t the same as a normal kid’s and opened her eyes to the possibilities.

    It was during second grade my mom pulled my sister out of school for majority of the year. Even with the diagnosis, the school was failing to provide sufficient support for my sister and her classroom teacher was already infamous among the neurotypical kids in the first place.

    This is when my mom began to suspect my sister was having silent seizures in the classroom due to the lack of support. My mom took her out of school and fought with the school and school board.

    After a few months, the school board offered my sister a tutor she’d meet with at a library every week day. More often than not, I’d be the one sitting a few couches away with a book or homework at the library waiting for my sister to finish her hour of tutoring every day. I’d do my homework, typically in my school uniform since I had little time to change between school and supervising her at tutoring, and used it as time to study as long as my sister wasn’t having any issues.

    We continued with this until the end of the school year, and brought her back supervised during the last week to see her friends. Being withdrawn from school slowed her social development and socialization with other children her age, on top of her disabilities already holding her back from a neurotypical child’s social development.

    My family’s focus on my sister’s education situation often made me feel like I was in the background, and I didn’t understand it fully at the time. My mom told me that even though my sister was however old she was at the time, she was socially and mentally, at least three years below that.

    To this day, I don’t get defensive when strangers give my sister judgemental looks in public, I pity them because it shows me that a lot of people still judge before they understand. In the end, I realize that I want to see change. I want to see the change I had in myself occur in other people. I want people to understand, and treat people and especially children with disabilities with respect even though their disability might not be visible to the eye.

    It might be a lot to ask for, but with hope and open hearts we can be the change we wish to see.

    Samuel Purdy

    What Has Helped Me Accept the Inevitability of My Son's Death

    There are times I resent the labels attached to my son: disabled, special needs, developmentally delayed. There are times, however, that I fall back on using these quick phrases to quickly make a point. This is usually when I am frustrated, emotions are running high, and energy is running low. Sometimes what I need to convey in those instances is that my baby boy may not live as long as other children. During my child’s two and a half year life, and during the months before he was born, the spectre of his death has frequented my thoughts and has been a part of the conversations my wife and I have shared. When we first received confirmation of his diagnosis, a brain condition named semilobar holoprosencephaly, my wife’s doctors let us know if he made it to his birth, he would likely not live through his stay in the NICU. We struggled to find out information, any information, about our son’s diagnosis and struggled to balance mourning for our son, navigating the medical system, maintaining employment and graduate school, caring for our older (but still toddler-aged daughter), and preparing, hopefully, to bring our child home. My older brother gave me one of the sweetest, most tender and heartbreaking offers I have ever received: he would pay for my child’s funeral if it came to that. After bringing our son home, I was constantly asked two questions. First, How was he doing? I wasn’t equipped yet to answer that as a father. In my mind the script went something like “Fine I guess? I mean, he’s not sick but he’s missing parts of his brain. So…”The second question was some variation of: “How long will he live for?” These were well intentioned people who loved us, and we loved them, so my wife and I reserved our comments about how we felt about that question to our private, and often tear-filled, conversations. I had an answer prepared for it, though: “Fifty percent of babies with his condition won’t make it to a year. After that we don’t know.” My wife would tell people my son had a terminal condition during this time. “He’s not dying,” I’d tell her, purposely rolling my eyes publicly, “You make it sound like he’s about to go any day.” That sarcasm made myself feel better about what she was saying. But all of the medical professionals around us were agreeing with my wife. By my son’s 1st birthday, however, we both agreed he “wasn’t dying.” Having found a support network of parents and families also impacted by holoprosencephaly, we saw that these children, and their families, could thrive and be happy for decades. I adopted the label “medically fragile” to get across the severity of my son’s conditions. “Medically complex” has replaced “medically fragile” as the companion label to disabilities. After all, my son has numerous symptoms and many medical specialists who we had to manage, but his immune functioning and overall health was fine. My son isn’t fragile at all. I still don’t know how to answer the question “how is he doing” to most people except a “he’s doing great!” Sometimes it feels like it masks the work it takes for him to make even small developmental gains or the joy we have in those gains. Even though “terminally ill” has been replaced by “medically fragile” and then “medically complex,” death is still a part of the background of our lives. Other beautiful children like our son, in families like ours, succumb to sudden onsets of pneumonia, develop life-ending complications from seizures, or even just slip away in the middle of the night without a known cause. These thoughts used to sneak up on me and leave me feeling debilitated and helpless. After bringing my son home from the hospital I checked on him every morning before I left from work to make sure he was still breathing; to make sure he didn’t leave us in the night. After I forced myself to stop this ritual, the drive to work became very difficult for me. I was alone with my thoughts on my drive, and at least once a week I found myself gasping in my car in the parking lot of the elementary school where I worked, wiping tears from my eyes so I could be ready to go and take care of the children and families who needed me to be emotionally and mentally present. I’ve gotten to a much healthier emotional place in the last few months. A much healthier place. First, I stopped pretending I wasn’t devastated by these thoughts. I had tried (poorly) to keep how I felt from my wife, not wanting to burden her with my emotional well-being or bring her down, too. I had to remind myself to share when I was starting to have pervasive thoughts about my son’s end of life with my wife or a few others who “got” what it was like to have this sort of spectre in the home. Second, my wife and I took the time to set real priorities for our family. What we wanted ourselves, our parenting, and our day-to-day lives to be like now, and in the future. We wrote it down and then made a list of priorities as a couple. What this allowed me to do is to stop avoiding looking at building positive memories, habits, routines and rituals with both of my children because I was afraid of what the future would bring. Third, I faced the idea of death head-on. These other two steps, paired with over two years of trying to keep the thought of my child’s death out of my mind and failing pretty miserably, let me be open when I stumbled across a youtube channel called “Ask a Mortician” created by Caitlin Doughty. Although morbid at times, I was lured in at first by a few videos sharing frank and fascinating facts about the death care industry. Caitlin’s philosophy of death, however, touched me. It was tender and beautiful, frank and grounded in reality. She advocated for all of us to look at death as a natural but inevitable part of life; that avoiding thinking, talking and planning for death creates more anxiety about its existence and robs us the meaningful final moments we may have with a loved one. That anxiety has robbed me plenty of moments with my young family already. Learning to face the realities of life, including death, is helping me to live a fuller life. Somewhere in these past two months, I’ve found the space to forgive myself for two great shames I’ve been holding on to: that I felt so devastated about the potential of my son’s death despite my religious convictions; and that I allowed myself to wish, in a moment that’s stuck in my memory, that he would pass away quickly after being born so we wouldn’t have to experience the pain of getting to know and love him first. Holding on to this shame isn’t helping me be happier, or be better, just like trying to force away the thought of death hasn’t. My son may well live for another 30 years. I hope he does and more! It is an emotional burden knowing it is likely he won’t. But by learning to accept death and plan for its inevitability I am hoping, and finding, that it helps me to accept my life more, too. We want to hear your story. Become a Mighty contributor here . Image via © Gloss Photography Studios