What Moms of Special Needs Children Do Not Want to Hear

This weekend was really difficult for us.   Jon, Rory and I went to a local K9 Festival and had a great time seeing all the dogs.   There was only one problem; Rory's shoes were quite a distraction for many people.   She was in her bike/stroller so if people saw her from one side, they would only see her one big shoe. We had so many people come up to us talking about her shoe; the usual comments: how they have never seen platform shoes for babies, if she has trouble walking in her platforms, where they can find heels for their babies, and of course how cute it is.   Jon is better about shaking things off than I am, but after a while these comments start to get to me. Which brings me to today's post.   There are a few things that people have said to me that have made me feel nothing less than awful.   I just want other people to know.

  What did you do to cause this?  

I know that as a mother of a child with special needs, I have guilt about Rory's leg.   I know that there was nothing I could have done differently during my pregnancy that would change Rory's getting Congenital Femoral Deficiency, but I still have the motherly feelings of guilt that there was something I could have done; because she was in my womb.   The last thing a mother wants to here is that they did something to harm their baby- trust me, they have enough guilt, even if they had no control over what happened. I remember the first time an older woman said this to me (at a church no less).   It killed me, I came home and cried for hours.   I wasn't sure if she expected me to say that I smoked during my pregnancy or what (I did pregnancy by the book) but I do know how much it hurt. All I know is that if I could have done something to prevent Rory from getting this, I would.   I would cut off my my leg and give it to her, I would do anything I could to help that little leg grow to be the same size as the other leg; so for someone to ask me what I did to cause this…It just hurts.

 It's so cute! (whatever the disability is)

I know Rory is adorable, and that everything about her is adorable; but sometimes it is really hard when people tell me how cute her shoe is.   Having people tell me about how cute it is makes me feel like people think it is a privilege to have a special shoe.   That her shoe is some fancy accessory, other people want to have.   I wish that Rory would never have to wear her shoe lift again, that we could go to any shoe store and pick out any kind of shoes there and Rory could even wear them home. I know people want to just try and make me feel good, but hearing about how cute it is is difficult to hear.

The last thing, isn't saying anything- it's an action: a stare.  

I   am pretty sure any mother of a special needs child would much rather have someone ask a question about their child’s condition than have someone stare.   Sadly, many of the stares come from adults, other kids seem to always ask. When we were leaving Florida from one of our visits to Dr. Paley, there was a husband and wife couple across from us in the airport.   The wife couldn't take her eyes off Rory's shoe.   After a few minutes, she nudged her husband and whispered, look at that baby's big shoe.   Just what every mother wants, people looking at your child like she belongs in the circus.   I was a few feet away from her and would have much rather her ask me about the shoe. I always welcome questions about Rory's condition because I want to make people more aware of her Congenital Femoral Deficiency.   I think other mothers of special needs kids would much rather answer a question than have their child being stared at.   No one wants their imperfections pointed out (I am not sure if imperfection is the right word, since Rory is completely perfect in my eyes…but for now it will have to do). Just remember: Mothers are extremely sensitive with their children.   Before you say anything to a mother with a special needs child, just think about if you would want someone to say that about your child (or loved one).

It is hard to be a mom….especially when your child has special needs.

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