Apraxia Awareness 2016 – Roar of the Lion

Dear Noah,

You told me something today:“Some of the kids at prep say I talk like a baby.”

Words cut deep, bub.  I know.  Those words hurt you and they hurt me too.  But those kids just don’t understand that your voice is the sweetest, bravest voice in the world to me.  They don’t know what it has taken for you to be able to say those words to me.  They have never heard the word “apraxia” and can’t see the block that prevents your brain sending messages to your speech muscles.  Your classmates don’t know that you actually have to think through the sound sequencing of each word and the order your words come out and that this is why you speak a little slowly and your intonation is not quite right.

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Noah loves Prep!

You see, buddy, words come easily to most kids.  They don’t have to think too hard to make it happen.  Because of that, they think it should be easy for everybody and don’t realise that it isn’t.  If they knew what it had taken for you to talk, they’d be cheering.  Matey, most of your work and effort takes place behind closed doors.  Only your family are privileged to see what it takes every day to give you a voice.  Only your speech therapist can see the numbers on paper that show the steady improvement in your ability to make and connect sounds.

Only you know the pain of having your words trapped inside your head and being unable to get them out.  Only you and me know the intensity of working for months on end for your first two syllable word and your first sentence – modelling and cueing each word individually over and over again until one day it popped out: “IWANCHEE!” (apraxia for “I want cheese.”)  Only you know the frustration of trying your best, only to have mummy say, “No, try again….No, listen carefully – ve-ge-ta-ble.”  I know the pain you feel when you are misunderstood on something that is important to you.  But, I also know the exhilaration you feel on saying a difficult word perfectly after heaps and heaps of practice.  I feel those things too, buddy.

You sit with me each morning for our talking practice.  You’re getting bigger now and we go for 30 minutes.  Every day, including weekends and holidays.  We have a target sound that we may work on for weeks or months.  Currently it is /j/ in the middle of words.  I model.  You repeat.  We say our new words five times each and cue the target sound with a hand signal.  We then put each word into a phrase or short sentence…and repeat it until that /j/ sound comes out just right.  We keep going until Sally, your speech therapist is happy that the sound has been assimilated into your speech securely without cueing.  We move on to play a game of “Guess Who?”  We practice asking “is” and “does” questions and logical reasoning.  We finish with some phonics, writing on a dry erase board or using letter blocks to make CVC words.  What a work out…and then it’s time to go to school.  Not only that, we weave speech into everyday life, getting you to repeat words or sentences that were not quite right.  As we read, we pick out target sounds and emphasise them in the stories.

You have built up muscles at age 6 that most kids will be working on for a long time yet – Perseverance, Tenacity, Fortitude, Determination, Strength.  The kids don’t yet see the wonderful work that God is doing in your life or the godly man that you will become – fruitful, brave, trustworthy and strong.  They think your sweet little voice is like that of a mouse.  What they don’t know is that it’s really the roar of a lion.

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Noah – Roar of the Lion

Apraxia Awareness Day is coming up soon.  Let’s find a way to help the kids understand what it takes for you to be able to speak.  We’re so proud of your voice because we know what it took to find it.

I love you so much.

Mummy xx

PS.  We visited Noah’s class to talk to the kids about Apraxia.  I made a photo book with a story about Noah and how Apraxia affects him.  We gave out cup cakes with blue icing because blue is the colour of apraxia awareness used by CASANA (Childhood Apraxia of Speech Association of North America).  Here is Noah’s Apraxia Awareness Message for 2016.

Watch Noah’s Apraxia Awareness Message on youtube