I remember the day vividly: it was the day before Christmas and our genetic counselor called to tell us our son's official medical diagnosis. We had waited over three years to find a cause of our son's multiple health issues and she immediately began the phone call apologizing profusely for the medical term she was about to use. As she went on, she informed us our son had a mutation in the UBE2A gene causing an "x-linked mental retardation syndrome", now known as "UBE2A Deficiency Syndrome". I was not offended by that term in this specific instance as it was referring to a medical term. Instead, I was relieved to finally have a name to call what had affected my boy's life since the moment he came into this world. I had a name to call "it" - that thing that had caused him to be globally delayed, have seizures, self-harming issues, and absent speech. The "R-word" is not not something I use to define my son but I am also not afraid or ashamed that it is on his list of medical diagnoses. Since we began this journey, I have noticed that even within the special needs community people act as if having a cognitive issue is somehow "lesser than" other diagnoses or people assume that it somehow makes him "unable to communicate or understand anything". I've been to meet-and-greets with other special needs parents who, upon introduction to an entire room of people, felt the need to share that their child is NOT affected cognitively as if it is a dark dirty thing that needs to be concealed or hidden away. It was spoken as if they were waiting for the crowd of people to usher a sigh of relief for them when many of us were probably biting our tongues. It is sad that even within the special needs community, children with intellectual disabilities are put in that "other" category at all. By acting as if an intellectual disability is something to be mad or ashamed about only further perpetuates the entire idea that having it is something unsavory. To assume a child with intellectual disabilities cannot understand or communicate with people is so far off base that I want to scream. I refuse to not speak up when I hear things like this. I have found that even those who are supposed to be closest to us say hurtful things about our son's intellect, his inability to speak (for now) and/or how he behaves. For years we were made to feel as though we were "crazy" or that we were making up what was going on with our son. Now that it is more obvious to everyone we have people asking "He will he grow out of it, right?" or "He just needs more time". Seriously, please just stop! Don't say those things to me, my husband or to anyone else with a special needs child. Please stop acting as if having an intellectual disability as a diagnosis is something to shush or fear. Abram is who he is and he has worked incredibly hard to do all the things that most people take for granted. As an infant we were told he may never walk so the fact that he is not only walking but running, jumping and walking up stairs with assistance is basically nothing short of a miracle for him at 5 years old. Abram's list of diagnoses is quite extensive and intellectual disability is just one of many on a long list - but out of all of them - having an intellectual disability is the one that people can't handle. Saying he needs more time just takes away how hard he has worked at his therapies for the last four years! Just because Abram cannot speak does NOT mean that he cannot understand you, your intentions or your tone. Just because he an intellectual disability does not mean that he cannot comprehend or communicate in other ways. Just because he has "intellectual disability" as part of his diagnosis does not mean that you get to limit his worth as a person! It is not okay or funny to joke about any part of the things he can not do, period. My little boy changed my life and my world and brought into it the best gift I could have ever received: the ability to take joy in all the little things. In our house, we celebrate milestones in inches and we find joy in the the little things most people find mundane. Having a child with an intellectual disability is the best thing that ever happened to me and I wish that people would stop acting as if his diagnosis will hinder the things he wants to do. Abram will be able to do all the things he wants to do, just like everyone else. Diagnoses do not define a person. Words, cruel personalities and unkindnesses do. |
About MeHello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis. MOST POPULAR BlOG ENTRYJOIN US
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