The Things People Have Said…

We’ve all had them. Thoughtless, insensitive and sometimes, the downright rude comment or question. We’ve also experienced the complete opposite of this — individuals who say and do the kindest, most caring and breathtakingly beautiful things.

I’ve often wondered — what is the source of this difference in perspective? What possesses one person to think that it is OK to walk up to a complete stranger and say something harsh, critical or exceptionally intrusive to the parent of a child with obvious medical challenges? Why does another walk up with a smile on their face, a friendly wave and share a heart filled with compassion and kindness? Is there something that can be done to encourage the former to emulate the latter? I really wish I knew.

So I thought I would take some time here to share an inside view of how careless comments can come across to families with special needs children and hopefully provide a little help to anyone looking for insight. We’re really not that scary to talk to and we honestly love talking about our children when we are approached with courtesy and genuine interest. Keep in mind that when you first approach us, we may be a little gun shy, but friendliness and a kind smile will go a long way. For the most part, it’s just common sense and empathy — taking the time to think before speaking and pausing to put oneself in the other person’s place.

Below are some actual examples of things that have been said to my family:

Did you drink or do drugs while you were pregnant?

This one really should never be said. Ever. While the person asking the question might put it in the category of harmless and curious, to the mom it is a knife to the heart. As special needs moms, we spend a lot of time — too much time mulling over that question. Could I have done anything, anything at all differently to have made things better for my child? I’ve never in my life consumed alcohol or drugs, but that didn’t prevent me from torturing myself over the unknown chlorine levels in that glass of tap water I had while pregnant, or household cleaners I may have come in contact with, or times I may have stood too close to a running microwave, and on and on. Parents of children with special needs really don’t need help beating themselves up over all of those “what if’s” — it’s not fair to anyone. If you have an established relationship with someone of a special needs child and want to know if there was an external cause for the child’s condition, it is much better to ask, “Is there any known cause for this condition?” We love to share our knowledge to those who want to learn and understand.

What does she have on her face?

Our daughter was born with a rare birth defect called a lymphatic malformation which manifested itself as a large mass on the right side of her face and neck. As a general rule, it’s not a good idea to ask questions about someone’s appearance unless you have already established a line of conversation on the topic. In other words, this question might be OK in the right context, but it should never be used as a conversation starter. Even as a question, it could be phrased more tactfully: “If it’s not too intrusive to ask, what is your child’s diagnosis? What do her doctors say about her prognosis?” Phrasing the question like this conveys genuine interest and concern for the child. The former, while essentially asking the same question, comes off as more callous — more like something one might ask while examining a bug under a magnifying glass.

What were you thinking? Why didn’t you have an abortion?

Approaching a special needs parent with personal opinions (particularly one you don’t know well) about the topic of abortion is never appropriate. This is the wrong place, the wrong time, the wrong person to initiate this form of conversation with. We love our children fiercely and a question like this is equivalent to saying to us, “I really don’t think your child deserves to be here.” If the intent is to just learn a parent’s opinion on the general topic of abortion, care should be taken to phrase the question in general terms and to avoid a judgmental tone. “What do you believe about abortion?” would be a much better phrased question than “Why didn’t you have one?”

What on earth is wrong with you? What would posses you to overfeed a child like that?

These questions were shrieked at me by a woman I had never met who approached me from my daughter’s right side at a grocery store when my daughter was two years old. She had seen an episode of Oprah on the topic of childhood obesity. She saw the mass on the one side of my daughters face, jumped to a conclusion and only backed down when I turned my daughter so that she could she could see the other side of her face. Moral of the story? Don’t assume that you have the whole story. In our situation, it was easy for the woman to see she had made a mistake. But what about making a split-second judgment about that horribly behaved child and that incompetent parent you just saw in the department store? Maybe the child has a sensory processing disorder, autism, Tourette’s, or any of a number of medical challenges. Maybe that parent is anything but incompetent. It’s one thing to call your cousin onto the carpet for letting his perfectly healthy kids run wild at your child’s birthday party — it’s entirely another to assume the worst of someone you don’t even know. If you think you know the whole story, stop and think again. Then give us the benefit of the doubt.

Do you mind if I unabashedly stare at your child? (Actually, nobody has ever truly asked this — they just do it)

We’re used to people taking second looks. That’s not what I’m talking about here. I’m talking about the stop-in-your-tracks-slack-jawed-five-minute stare. Not appropriate. Not ever. If you catch yourself unintentionally staring, try adding a friendly smile, wave hello, stop and introduce yourself. Think ahead of time of something kind to say in situations like this. Compliment the child’s eyes, smile, outfit — anything. Who knows? You might make a new friend.

Do you mind if I allow my child to stare or make fun of your child while I sit here and do nothing about it? (No one has ever actually asked this one either..)

We’re parents. We know that kids sometimes say and do things that they shouldn’t. Ours do too. But don’t make the mistake of just ignoring what your child is doing in respect to others simply because you’re embarrassed. Correct them. Show them how to be polite: “Timmy, it’s really not polite to stare and point, we smile and wave instead. Why don’t you come over here with me and introduce yourself to this nice little girl…”

Do you want to hear my unsubstantiated advice on what you should do about your child’s behavior or my boundless knowledge on the latest and greatest naturopathic, homeopathic cure for whatever condition that I, in my ultimate wisdom, have deemed your child’s diagnosis to be?

Please, please be careful with this one. Even when coming from a family member, this is not a great choice of topic for a conversation with the parent of a special needs child. It’s really better not to take on this subject. Most of the time it just comes off as if you think you know more than we do about our child’s condition and what to do about it, making us feel like you believe we are doing a sub-par job and that you could do better. We have had things said to us like:

“Well, in MY day, they didn’t have feeding tubes. You ate your dinner and that was that.”

“A little mustard plaster would shrink that thing on her face right up. Why haven’t you tried it? Here, I’ll write you out the recipe…”

“Swelling is caused by toxins, I bet all she needs is a good herbal detox. You could probably use one too.”

“All of this feeding-tube allergy stuff probably wouldn’t have happened with her if you had breast-fed.” (Breast-feeding advice — yet another example of a topic to avoid assuming that you have the whole story on.)

Basically, as in most other situations in life, it’s best not to give advice unless it is solicited. We’re all happier when this basic rule of courtesy is followed.

Wouldn’t it be better if you just kept a child like that at home?

In our case, this question was generally intended to imply that no one really wanted to see another person’s physical disfigurement and that we should just stay home so that no one would have to look at our child. I’ve heard similar things said to other parents too though — parents of children with behavioral challenges and other conditions that are no fault of their own. We live in a diverse world and civilized society requires that we respect those differences in each other. If you are uncomfortable around someone with behavioral or physical differences to the point that you have these sort of thoughts, it is much more appropriate to acknowledge it as a problem that you personally have difficulty dealing with and remove yourself in a quiet and unobtrusive manner from the vicinity without saying or doing anything unkind. It also might be a good idea to take some time to consider the reason that you have thoughts like this about others and attempt to take steps to change your point of view. An exercise in empathy would be a great place to start.

Is she brain damaged? Retarded? Autistic?

This sort of question has always bothered me for a whole host of reasons. Primarily because they are all labels — labels that really aren’t appropriate in this sort of context even for someone carrying these specific diagnoses. People who notice my daughter’s asymmetrical face and the nerve damage that causes her expressions to be unbalanced her right side sometimes attempt to further pigeon-hole her as having some sort of cognitive impairment which essentially says to me, “I don’t care about taking the time to get to know your child, I just want to know how to label her.” It is equally inappropriate to make comments implying that an autistic child is always going to act out behaviorally, or to assume that someone with Down Syndrome can’t do something because they are “retarded”, or to assume that someone with cerebral palsy cannot communicate.

Why? Because it’s likely just not true. My daughter is six and tests out with the vocabulary of a seventh-grader even though she can’t smile straight. People with Down Syndrome have run marathons, graduated from college, become actors. People with autism have become artists, mathematicians, musicians. People with cerebral palsy have written books and become scientists — I know a little girl with cerebral palsy who dances ballet like an angel. Don’t make the mistake labeling an individual based on a diagnosis. If you do, you are the one who will be missing out. Instead, if you catch yourself doing this, stop and take the time to get to know the person you are making the assumptions about . I guarantee that you’ll forget all about your desire to label someone when you take the time to stop and laugh over the same joke with them.

We’re really not as different from each other as we might think…

Find out more about Michelle
Read Michelle’s weekly column
Meet Michelle here each Monday for Magic Marker Monday
Questions? Please feel free to email Michelle at childlif[at]gmail[dot]com or come and visit her at In The Life of a Child

Michelle is a stay-at-home mom, wife to her wonderful husband, and mother of their two adorable and much-loved children. Through her blog, In The Life of a Child, Michelle has grown a passion for supporting families who are parenting children through extreme medical challenges. Her oldest child was born with a rare birth defect known as a lymphatic malformation and was also diagnosed with cyclic vomiting syndrome. Michelle and her husband share a common goal as parents: To treasure every moment and raise their children to be extraordinary individuals.

Michelle

View all posts by Michelle
Michelles website