Thursday, August 20, 2015

The Right Words

A friend and I were talking the other day and she told me how much she likes this blog.  Then she asked me if I could write a post about the things I wish people wouldn't say to me as a special needs mom and the things I wish they would say.  And the truth is, I've thought about writing a blog like that for awhile now.  But the reason I haven't is because I know that most people who ask about Ellie or make a comment about her actually have their hearts in the right place.  They are curious or concerned or want to offer words of encouragement but they just don't know what to say and end up saying the wrong thing.

And truthfully, I feel like I do this all the time myself.  I mean one thing but it just doesn't come out right.  So I can absolutely relate to this feeling of concern that someone would have in fearing they will say the wrong thing.  But the truth is, I would rather someone ask something in the wrong way then to not ask at all.  I do, at times, feel like people avoid us or avoid asking about Ellie because they don't know what to say.  Here's the thing though, all moms like to talk about their kids.  And all moms are proud of their kids.  Moms of special needs kids are no different.  In fact a lot of moms of special needs kids have amazing stories to tell and if you don't ask you might miss out on the opportunity to hear about a real life miracle that's right before your eyes.

With that being said, there are certain thing that I do like hearing more than others.  And while Ellie doesn't seem to pay much attention to what adults are talking about, eventually she will and she is a person with feelings just like the rest of us. So the following are some of the things people have said to me that I'm not especially crazy about and examples of things I really like hearing.  I will note that these are just my own personal preferences and so I can't speak for other parents of special needs children.
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1.  I'm not a big fan of questions or comments that use the word "normal".  For example, "I hope she gets back to normal soon" or "Do they expect her speech, cognition, hand use, etc to one day be normal?"  The questions and comments aren't wrong in themselves but when you throw the word "normal" in there, it gives me a sense that you think my child is something other than normal and to our family, Ellie is just as normal as everyone else.  I won't really expand on this because I already did in a previous blog post.

What I would rather hear instead:

"I'm still praying for Ellie."  I love this one.  If you could say one thing to me that would mean the most, it's this.  I believe in the power of prayers and to know you are still praying for my daughter means the world to me.

"What do her doctors think about her speech, cognition, hand use, etc?"  See, you don't have to use the word "normal" and by asking the questions, I know you care about my daughter.  It doesn't bother me one bit to talk about.

2.  "She's going to be just fine."  There's a mom I know who likes to say this to me.  I know she means well.  But I have noticed when she thinks something is wrong with her daughter, she doesn't say this.  When something is wrong with her daughter she is concerned, as she should be.  The thing is, Ellie's doctors don't tell us, "She's going to be fine".  On the contrary they tell us, "If you ever think anything is wrong you need to call immediately".  So how can she be so sure that Ellie's going to be fine?  It also feels like it invalidates the constant concerns that Charles and I do have for Ellie's health.

Instead she could say:

"She is such a miracle!"  

"You must still be so concerned about her."  The last thing I want is anyone's pity but I do think it shows how much you care if you are willing to put yourself in my shoes for a minute and realize that having a child with a serious illness is not easy.

3.  "What's wrong with her?"  In general this question doesn't bother me because I know what the person really means and I know that just asking shows that the person cares.  What I do have a problem with is when this question is asked where Ellie can hear it.  Because while I understand what you are asking me, she doesn't need to hear that someone thinks something is wrong with her.

You might think it's children who ask this question but that hasn't been my experience at all.  I've been asked the question in these exact words 3 times and all have come from adults.  I think children ask better questions in this instance.  Children ask, "Why does she wear a helmet?"  "What's that on her stomach?" (asking about her G button), and "Is that a leg brace?"  A lot of little girls start out with, "I love her helmet!  Why does she wear it?"  Children get it right.  Simple and to the point without the negative implications.

4.  Please don't compare Ellie to your typically developed child.  When people compare Ellie to their child, it is always done in an attempt to encourage me but it in fact does the opposite.  The times this has happened, it has been people comparing Ellie to their child that is younger than she is.  "It's okay, Carson doesn't talk much yet either.  I really don't think she is much behind where he's at."  When this happens, I can't help but in my mind compare Ellie to their child for the rest of the time we are together and every comparison hurts.  Carson runs, Carson jumps, Carson climbs, Carson calls for his "Mama", Carson asks for "wawa" (water), Carson can make animal sounds, Carson can answer "yes" and "no" questions...... You get the idea. 

This doesn't mean that I don't want to hear about your child.  Because I do.  I want to hear about all the amazing things that they can do because I can relate to the feelings of pride as your child meets milestones, grows, and learns new things.  As long as we aren't comparing our kids, I can be happy for your child's accomplishments just as I am happy for my own children.

5.  "I can't even tell anything is wrong with her."  I never really know how to respond to this statement.  Should I point out for you all the ways she is different from other children her age?  Usually I just kind of agree and move on because I'm sure the person is just trying to be encouraging even if their statement minimizes everything Ellie has been through and continues to go through.  And just like the problem I have with the world "normal", this too indicates that the person thinks something is wrong with my perfect little girl.

It's much nicer to hear:

"She sure is a determined little girl."

"I know you must be very proud of her."

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I want you to talk to me about Ellie, whether you know the right things to say or not.  When I have Ellie with me and we meet someone new, I actually feel more awkward about the situation if that person doesn't ask me about Ellie than if they do.  I don't know if they just think they aren't supposed to ask or if they actually don't want to hear about her.  And since I find it awkward, I will oftentimes go ahead and tell the person all about Ellie, whether they wanted to hear about her or not.

I'm still learning the right and wrong things to say myself.  Recently Payton saw a man in a wheelchair and she blurted out, "Maybe he had a stroke!"  Being the mother of a child who has had strokes did NOT prepare me to be able to respond to Payton's comment.  I didn't know what to say!  He acted like he didn't hear her and so I acted the same way.  I hope people will forgive me for saying the wrong thing or not saying anything at all when I just don't know what to say.

I think the best advice is to always speak from your heart and then the person listening will know your intentions even if your words don't come out right.  The intentions behind the words are far more important than the exact words you use.  So to my friend who asked me to write this blog, thank you for caring enough about my feelings to ask me to write about this topic.  You are careful with your words and on top of that, I know your heart and I know that you only mean good in the things that you say.  I think most people mean good whether they use the right words or not.


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