Thursday, May 14, 2015

Words matter

As a mother, you feel a sense of loss when your child has developmental delays. You lose out on the normalcy of a typical childhood. You feel lost because your kid doesn’t fall into the normal developmental timeline. You don’t know when or if your child will reach his milestones. You feel like you are working harder than most parents with normal kids in a developmental tug-of-war.  You aren’t just guiding them over their hurdles, you are dragging them, kicking and screaming.  Not only is it hard on you, it is also hard on them because they know they are different. There are daily reminders of how you and your family are different from everyone else. There is a nagging sense of loss, no matter how you spin it. 

What I recently realized is that my daughter has felt this loss too. She has shared in the same loss and pain I have felt because we know that Ben is different and sometimes, very, very difficult. Emily is a typically developing (and sometimes precocious) kindergartener who loves her little 3-year-old brother. 

But she knows he isn’t like most kids. 

There must be a disconnect in her brain saying, “Ben is nearly my size, but he can’t talk like me. What is wrong here?” I have caught her musing about what Ben’s voice will sound like and what he will say to her someday. Sometimes she asks me for a normal sibling that she can talk to. (Ouch.) She will ask him if he can say X, Y, or Z and is usually met with a blank stare, like he didn’t hear her.  But he DID hear her and he DID understand. He has difficulty speaking because of his verbal apraxia. Ben desperately wants to talk, and he understands most of what is said around him, but he has trouble getting the words out due to this stubborn speech disorder.

Ben is 3.5 years old and still can’t say his own name. He calls himself “Bee.” He only recently started saying the word “me.” I wondered if maybe he could call his sister “Mimi” as a starting point. We have been working on getting this word out of him for a few months. Just this month he has been spontaneously and accurately referring to her as Mimi. 

You would not believe how glorious this one word is!

When he first started calling her Mimi, she would whip her head around to see if anyone else witnessed this remarkable voice coming from her brother’s mouth. “MOM! BEN SAID MIMI!!” She often turns to him and says, “Awwwwww, you said my name.” She has been waiting so long for affirmation of her brother’s desire to play with her and be with her and, simply, to just say her name.  She has been patiently waiting over three years and it is amazing how important just saying a name can be. Seeing her pure delight in a simple word made me realize that she has felt loss, too. If I didn’t realize it before, I realize it now: words matter.

Words really matter. You might not understand this until you witness how hard it is for some kids to develop their words. I have witnessed countless speech therapy sessions where I see the painful struggle on Ben’s face as he tries to form a word, groping for the right sound. I have had to fight back tears when I watch him concentrate SO hard, scanning his memory for the right motor plan to say “up” or “out” or “yes,” but all he can get out is “hum.”  Each day is a battle to push him beyond his comfort level and get some words out, but not to push so hard as to cause frustration or low self-esteem. Without the push, it just won’t get done. Apraxia doesn’t just resolve on its own. It is time-intensive, slow and agonizing. 

Despite the loss our family feels on behalf of this apraxia problem, we have taken some good things from it. Like I said before, words really matter. It is a reminder to use kind words and to be supportive and uplifting to others, especially to children. I feel a loss, yes, that my child is different. But I also recognize what a wonderfully bright kid Ben is and see how he has the strength to overcome many adversities in life. He has tenacity because even though he throws tantrums in speech therapy, he doesn’t quit.  In addition, my daughter has grown into such a caring and compassionate person.  She stands up for her brother when her friends ignore him or make fun of him. She always chooses him, despite all her frustrated moments with him. And now that he can say her name, well, I am thinking this will be a strong partnership for life.

May 14 is Apraxia Awareness Day-check out