Sunday, March 3, 2013

Starting again, and Emeline's request

Wow. So I haven't written a blog post in 9 months. If the saying goes, "Time flies when you're having fun," then I guess I am having a blast, because if you would have asked me, I would have replied in embarrassment, "Oh, it's been 2 or 3 months since I last blogged." Huh. Well, rather than lament what can't be undone, I'll just do what I *CAN* do....Try again, starting today. So here we go...

In the last few weeks, I have felt the niggling in my stomach. I have felt the need with building urgency that writing here (read that "writing here with some degree of consistency and regularity") is something I *NEED* to do. Not for me, but for Emeline. She is growing. She is changing. Growth and change are exciting, but at times they can be scary, too. Being stretched, expanding one's comfort zone is not always easy nor comfortable, but it is a part of life, and well, that's what this blog is about--Emeline and her life.

So over the next few posts, whether they show up in a matter of days or months (hopefully days!) I want to share my heart with you, but more importantly share Emeline's experiences and her heart with you.

What's new with Emeline since the last post of May, 2012? So many things! New medical challenges, a new educational setting, some new extra-curricular activities, some new friends, and some exciting growth and progress! I will update you on all of those areas in the next few days (yes, I am forcing myself into commitment here, am I not?) but for today, I want to share just one quick story.    

The other day we were out, running some errands in town and everything was fine, or so I thought. But as we were driving home, I looked in the mirror and noticed Em's eyes were full of tears. She wasn't crying, but she looked like any second the dam would break. I said, "Emma, what is wrong?" as I racked my brain, trying to remember anything that could have happened that would have upset her so. Her answer, in all of its simplicity was very profound. "People never wissen. Say how are woo, but never wissen." (Translation: "People never listen. [They] say how are you, but [they] never listen.") It has taken over 7 years for her to get to this place, a place where she not only has something to say, but she also finally has the ability to say it. And she wants to be heard. But I suspect that because her speech is still sometimes garbled and/or unclear to those unused to communicating with her, people look away and/or disengage when they don't understand her.  I completely know what she is talking about.  We can be at the grocery store and see someone we know.  Invariably, they will say, "Hi, Emma!  How are you?" and two things will happen.  One, if Em doesn't immediately begin replying, the person will initiate conversation with me, effectively cutting Emma off from responding altogether.  Or, if they DO allow time for Em to respond, quite frequently they won't understand her and instead of saying, "Could you say that again?" or "I'm sorry, I didn't understand what you said, Emma" they will immediately initiate conversation with me with, "How has she been?  How is she doing?" which again cuts her off from the opportunity to respond.  Unfortunately, as evidenced by her tears of the other day, Emeline realizes that's what is happening.
And clearly, it makes her sad.  And that makes this momma's heart sad.

So what is the point of my sharing that story?  It's certainly NOT to discourage people from talking with Emeline, or any other person with intellectual disabilities.  Emma, and others like her, are usually thrilled to be treated like everyone else and included in real life experiences, including conversation in the grocery store or at the library.  If I am there with Emma, (which 99% of the time, I am---she certainly isn't driving herself anywhere yet! LOL), I try to "translate" for the person what Emma has said, if I see that they aren't understanding her *WHEN* they give me the chance.  On a rare occasion, people do.  But a great majority of the time, people don't.  They immediately begin addressing me, and unfortunately it would feel awkward (and probably comes across as quite rude) for me to say, "Hey, may I ask you to let my girl answer your question, before you begin talking with me?" So yeah, I don't say that.  But I am blogging about it today, because it matters.  You cared enough to ask how how she was; thank you for caring enough to let her answer you.   While it may not be a big deal to you, it really does matter to a little girl who at seven years old just wants to be heard.  


  1. Barb, this is something that I have never really thought about. As I've been spending time with a couple of children with some intellectual challenges lately, this is really making me think. I know I have been guilty of cutting off their voices. Thank you (and Emeline!) for posting this and making me aware of it!

  2. You are a very astute mother to notice that Em's feeling are being hurt as would ours when we get ignored. Kiss her for us and tell her I love her. Just because a person is challenged in their vocal speech does not mean that the mind is not recognizing all around them. I could not talk for 3 months when in the hospital and it was very frustrating to try to get people to understand what I was trying to say. So Good for you and don't worry about coming across rude to people, as your little one is depending on you. Just look at them and say I believe Em wants to answer your question and I will translate if you need. God Bless you.