TAKE THAT Speech Delay!

October 27, 2012 cl/cp, Education, IEP, public school, speech delay, speech therapy, velopharyngeal Insufficiency, Wife of the Prez 4 Comments

Never did I imagine even a year ago that our just-turned 7-year-old daughter would be preparing for a big solo on the rather large stage at our church.

Never did I imagine even a few weeks ago when the children were told they could try out for solos and/or speaking parts in the 1st and 2nd Grade Christmas musical, never did I imagine our big girl would tell her Daddy on the way home that evening that she planned to try out.

Never did I imagine a few weeks later that she would actually go through with the audition, and from what I hear from the unbiased judges, she WOWED them all. Now I’m biased, but they aren’t, and they were VERY impressed with her singing and her signing.

Never did I imagine she would go in that room and sing her heart out as she sang “Sing, Sing, Sing” and put signs to it as well, and that she would not only come out beaming but telling me she did so well and she just knew she would get to sing a solo!

Never did I imagine that I would be so thankful to hear a child be a bit boastful, but if you’ve ever parented a child who at one time never spoke outside the walls of her home because “no one understands me anyway” … well you’d be proud of her boasting too I promise!

She has battled hard against a special need it seems not many people talk about or rather one that is often glossed over: Expressive and Articulation Speech Delay along with a repair of lip and palate after age 3 (which means no one-on-one catch up early intervention services are available).

When we met Li’l Miss in September 2008, she was 35 months old and very sick from her unrepaired heart disease. She was also living with an unrepaired unilateral cleft lip and very wide cleft palate. In the last 4 years, she has endured 9 surgeries. Out of those 9 surgeries, 6 involved her cleft lip and palate or secondary needs related to it (ear tubes, dental issues, velopharyngeal insufficiency).

When I say this girl has FOUGHT for every SINGLE SOUND she makes, I mean she has fought. At times she has willed her way through. Other times she has muddled her way through. And yet other times she has sulked her way through all while practicing those sounds over and over and over again.

She rarely complains, though sometimes I can see the frustration on her face as she has to practice sounds that come so easy for so many. I can see her sadness as someone looks to me for help in deciphering what she has just said. I can see her shutting down all too often when she realizes her words do not hold weight when they are not understood by others.

I have to say if your child speaks with ease, please don’t ever take it for granted. I know I never will again.

Speech Delay is H.A.R.D. It has affected our sweet girl’s every day. Many moments of her every day. Many milestones of her every day. Many moments that she missed because of her speech delays.

So when we found out last Sunday that our Li’l Miss would not only be getting a solo to sing in front of hundreds, but also a 9-stanza solo in the song that headlines the musical?

Y’all, I did immediately think “TAKE THAT Speech Delay! TAKE THAT!”

I asked Li’l Miss if I could share this story on my blog and on another blog which helps people learn more about different special needs, and she immediately got a big smile and said, “YES! Mommy! Yes!”

I asked her if I could interview her, and she was very excited for this. Here are a few questions she answered for me today:

1). What would you say is the hardest part of living with expressive speech delays and articulation delays?
Li’l Miss said: When people don’t understand how I talk. I have to repeat words a lot. It just hard when your friends not know what you saying.

{Editor’s Note: If you’re thinking I should have edited this better, I wrote it just as she said it because this is such a perfect example of expressive speech delays. Our Li’l Miss often leaves out those helper words such as “is” and “are”. We are working hard on it, but old habits die hard and this one is hanging on for dear life!}

2). What do you think other children with speech delays should do if they are frustrated or sad about it?
Li’l Miss said: Just keep trying. Don’t give up. And try even harder. You can learn to talk because I did.

3). How excited are you about your solo and are you nervous at all?
Li’l Miss said: I am very, very excited. I cannot wait to sing on the stage. I am not nervous at all. It will be so much fun!

Now aside from the fact she just turned 7 years old and couldn’t say most of the words in her solo even 18 months ago, seriously, I am just so moved by her strong spirit and her determined resolve to never give up.

While I will never tell anyone from our personal experience that speech delays and cleft lip and palate are easy or minor needs, I will say this: if you are blessed with the privilege of parenting a cleft-affected child, you will see determination from depths you didn’t know possible, a strength in one’s spirit that is at times supernaturally given, and a willingness to work harder than even they thought possible.

Looking forward to December 2 when our big girl will debut on that stage, I can only imagine how many tissues I’ll use as I cry tears of joy for all this signifies for her and all of the other children who thought they would never be able to speak much less sing in front of hundreds of people on a “big stage!”

TAKE THAT Speech Delay! You’ve got nothing on our GIRL!

4 responses to “TAKE THAT Speech Delay!”

  1. Eileen says:

    CONGRATULATIONS!! What a huge accomplishment and I love that she’s so clearly seeing the results of all her hard work and can encourage others! It’s hard to keep a Kunmingster down!

  2. Stefanie says:

    Wowie WOW! Such fabulous news for your Lil’ Miss… you must be positively bursting with pride 🙂 I hope she is, too, can’t wait to hear all about the concert!
    So many wonderful lessons she has learned in perseverance and hard work that will be such a blessing to her as she grows up. No doubt, God has BIG plans for her!!

  3. Leanne says:

    Thanks for sharing! I am deaf and wanted to let you know that the sentences she spoke are normal in American Sign language, with pronouns left off. ASL helps with understanding concept, especially in school. It’s not unusual 🙂 and Wonder if you would videotape her solo? Will she be signing?
    I have a nephew age 4 who has cleft, and he talks pretty good. I would like to hear update on how she did! I know how hard speech therapy is, it is exhausting, and feel like criticitsm at times. So, its great seeing how her self esteem is where it is at! 🙂

  4. Lindsey says:

    As an SLP, I want to say thank you for this post. 🙂

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