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One Parent’s Perspective on Dealing With Ignorance

My name is Tina, and my son is Adam. Adam is a beautiful 13 year old with bright blue eyes and a huge smile. Adam lives with special needs. He was born early, as a result of his early birth, he lives with multiple medical needs and developmental issues.
As a parent of a child with complex special needs I have seen people react many ways when they meet my son. When he was younger, I had a harder time explaining or reacting to people, but by now I am comfortable in my role as the mother of a child with disabilities, and therefore I am able to let things go a bit more easily than I used to. I feel okay about educating others when I am in the mood. There are times, however, when I choose to be in a “parent” role and not advocate or educate.
I am often amazed at the percentage of our community that just doesn't “get it." But then, when I really think about it, before I had my son, I may not have really "gotten it" either. I have to remind myself of just how much I have learned from my son. There are times when it may be helpful to describe your feelings and needs to others who may not "get it."
It’s important to take a step back and remember that friends and relatives whose lives do not revolve around a child with special health care needs have not had the same incentive to understand. They may make insensitive or uneducated comments. Keep in mind that they may act this way because they do not have the knowledge you have. As much as our children with disabilities need understanding, so do our friends and relatives – to a certain extent. We are not the only ones who experience human limitations. People need time and education to understand new things, and even then it might take them a while.
For the first 8 years of Adam's life, we lived in a city in Utah with no other family around. All of our extended family lived in Florida, Iowa and California. Shortly after his 8th birthday, his Grandma and Grandpa, Uncles, Aunts and Cousins relocated to Utah. Over the years it has taken longer for some family members to warm up to Adam, simply because they do not know what to do with him. I am happy to say, his Uncles now scoop him up and tickle him (in his own way) just like they do all of the other kids. They truly enjoy him, but also know when he wants to be left alone. I have come to see, that for most people, understanding and acceptance takes time.
The ignorance of the general public, however, is another animal. It can be challenging enough to discuss our children and our lives with the people we are close to and with whom we have ongoing relationships, but the ignorance of strangers we meet at the grocery store or at the library, or out to dinner, can be infuriating.
Many times I have felt like I had to explain to someone why my son was acting a certain way, or why he has a tracheostomy. Depending on my mood, and how busy I am, I might choose to answer their questions. When I do have time to answer questions, I always ask my son if it is okay that we talk about him. His privacy is important, and there are reasons to talk about his disabilities, but just because someone is curious is not necessarily a good enough reason in your child's opinion. Educating the public is important, but it is not always our job in the midst of our already busy lives.
We just go about our lives most of the time with no problem. Sometimes we catch someone staring at us, and I usually just smile and nod. I have grown very comfortable in my own skin, and don't feel like I owe any stranger an explanation, especially if they are rude. I even have a few come-backs for some of the more frequent, rude questions we get in public:
  • Question: "What's wrong with him?"
    • Answer: "Let me ask - Adam, is there something wrong? - He says nope!"
  • Question: "Why does he shake his head and flap his hands all the time?"
    • Answer: "He is so happy, he dances all the time."
  • Question: "What is that thing in his neck?"
    • Answer: "It's called a trach, it's like a nose, but on his neck."
It is not my intention to hurt or insult anyone who asks a question, even if it seems rude. My answers are simply to make the person stop and think. I feel like it is ok not to have to explain our situation to everyone. After telling our story to doctors, nurses, therapists, teachers, and everyone else, sometimes having a quick, clever answer is just the perfect "easy out."
With all of that said, I have to say – it is a good time for disability awareness. I am seeing awareness, support and understanding more and more in our communities, on television, and with social media. All in all, there are plenty of people out there who do "get it". With increased awareness, acceptance, and support, our children will grow up in a world where disability is no longer considered different, but the norm.

Authors

Author: Tina Persels - 8/2013