Monthly Archives: March 2012

The Club

One of the most universal memories of my childhood was my mother using the “I love you” sign.  She taught it to my brother and I and used it early and often: out the car window, down the street, on her way out the door.  Although anyone who knew sign language understood what it meant, it felt that like our little family secret.

When S came along my mother taught her how to make the sign at a very young age.  I remember her fingers, still pudgy with baby fat, holding out the sign proudly.  She was now a part of our club.

Teaching E, however, to make this sign was a whole different story.  No matter how hard we tried, no matter how many times we put her fingers into the position, she could not do it by herself.  As we became more knowledgeable about her form of CAS and her accompanying dyspraxia, we realized this was just par for the course.  E was delayed pointing, waving, and clapping.  To this day she still cannot squeeze my hand on command.  She was never able to learn sign language when it could have helped her so, so much.  When a stranger asked her how old she was, not only could she not say the word, she couldn’t even hold up her fingers to show him.

But E has been working with her fingers as of late.  No one is doing any sort of particular therapy about this.  E is just highly motivated to practice on her own.  At times, and sometimes with her left hand holding down unneeded fingers, she can hold up certain fingers on her right hand.  (I think she’s secretly thrilled to be turning five in several months so that she can just hold up her hand with all five fingers!)

In the last week, she has been trying to make the “I love you” sign.  At first it was just her index finger and pinkie.  We were thrilled with that but yesterday and today she has been able to make the whole sign.  She uses her left hand to ensure that her fingers are all placed in the correct spot and then she holds it up proudly.  Today on the way home from speech therapy, at her beckoning I looked in the rearview mirror to see her holding up the sign.  “Is this it, Mommy?  It this right?”  She got it.

Welcome to the club E!

The Good, The Bad, and The Ugly

E’s first softball (t-ball) game was today.

The Good:

(Speech)

  • No issues.  She’s clear enough to give short answers and her sister is on the same team to translate if she says anything difficult for unfamiliar listeners to understand.

(Sensory)

  • She wore the uniform without any complaints.
  • She wore the pants that have two buttons and a zipper.  (She usually can only handle loose elastic pants.)  They were also 3/4 pants with elastic below the knee which she has never worn before.
  • She wore the socks which were probably pretty uncomfortable because when we took them off they had made huge marks all over her legs.
  • She wore her helmet (with a huge face guard).

(Socially)

  • She played with her teammates the entire time that we were waiting around during Opening Day.
  • Between waiting around for Opening Ceremonies and the game we were on the field for four and half hours.  E was as well-behaved as any of the other kids on the team.

(Motor)

  • E can throw the ball pretty well.  She could not throw anything six months ago.

The Bad:

(Speech)

  • Nothing.

(Sensory)

  • Nothing.

(Socially)

  • E played right field and spent most of the time with her back to the game or spinning.  Frustrating for me but most likely due in large part to her age and immaturity.  She is the youngest one on the team.

(Motor)

  • E cannot swing a bat worth squat - let alone make contact with the ball on the t.  We’ll have to work on the swinging motion first.

The Ugly:

(Speech)

  • Nothing.

(Sensory)

  • Nothing.

(Socially)

  • Nothing.

(Motor)

  • E did not want to (nor really understand how to) run the bases and only batted 1 1/2 times.

All and all, softball has been a good experience for her.  She has a lot to work on but she has come a long way.  She could not have handled all this sensory input even two months ago.  She’s growing, maturing, and improving every day.  Her favorite parts today were having everyone cheer for her at the end and getting juice and a snack after the game was over.  Of course, I was a big stress ball the entire game because I was worried about how she would handle everything and about how others would react to her.  She will earn a trophy at the end of the season but I think I deserve one too if I make it that long. ;)

And here’s the letter I sent off to her coaches tonight.  Hopefully, someday I won’t have to write these kinds of things anymore.

——————————————————————————————————————————-

E has Childhood Apraxia of Speech.  I wrote it on her registration forms but it is pretty rare and you’ve probably never heard of it before so I wanted to let you know a little about it.  CAS is a neurological motor speech disorder.  Her brain has a hard time controlling the muscles in her mouth.  Her motor problems are very similar to a stroke victim.  She has been in individual speech therapy two hours a week, eleven months a year, since she was twenty months old.  She has come a long way but her speech disorder is why her speech sounds different.  There are still quite a few sounds that she cannot say.  If you are struggling to understand her, S is usually pretty good at translating.

E also has some other motor difficulties, particularly with her arms and hands.  She just learned to throw in the last few months.  Right now swinging is pretty much impossible for her.  She has a hard time using her arms to cross her midline (moving her right arm to her left side and her left arm to her right side).  She will get it eventually but where other kids might take five times of practicing to understand the concept of swinging, it may literally take E a thousand times.  She has to build a muscle memory for each new motor movement she makes.  We’re working on with this at home too but I just wanted to let you know why she is having such a hard time.

E is very aware of her disabilities and when things get too difficult for her she will shut down and say she doesn’t want to do it.  We let her take breaks but we want her to keep working at it too.  There is nothing the matter with her cognitive functioning and because she is so aware of her disabilities, we try not to talk about them in front of her.  I haven’t had a chance to talk to you alone so I figured I would just email you instead.

She (and S) had a great time today.  Thank you for coaching and managing the team.  I’m sure all of the girls will have a great time this season.

Thanks,

Laura