Finding Noah’s Voice: I Can See The Mountain Top

A 165-meter zip line through the rainforest, mountain tops, views to the coast.  That is the day we planned to celebrate Sam’s ninth birthday.  Only the GPS ‘short cut’ led us down some beautiful country roads that became more and more countrified, finally ending in a dirt track with a sign stating ‘4WD access only’.  One problem – we didn’t have a 4WD.  We could see the mountain top, the place we wanted to be, but we had to go back and take the long route, up the winding mountain roads.  It was frustrating, time-consuming and the atmosphere in the car was not conducive to family fun.  However, once we arrived, we could laugh again.  The views were amazing, the rainforest rich and the excitement of two little boys whizzing down the zip line priceless.

dsc_2415

Noah on the zipline!

The road to speech has not been an easy one for Noah.  It has been much like scaling a mountain.  Despite vigorous effort and weariness from the daily, repetitive slog, the goal of articulate, fluent speech seemed to move further away at times.  Lately I have felt that we are almost there.  And so has Noah.  One day while we were waiting for his speech therapist, Noah said, “I think I don’t have much Apraxia any more.”  His speech therapist was delighted to overhear this and said I should put it on my blog

Noah has certainly made a lot of progress in these last 12 months.  He started school this year and it has been wonderful to see him making friends, talking with his classmates, answering questions in class and rarely being bothered by his Apraxia.  He is aware that sometimes he is difficult to understand, but he has the confidence to keep trying.

Noah’s class gave a presentation in chapel today.  A few weeks ago, I did my roster day in class and the kids were asked to put up their hand if they thought they could say a prayer in front of the whole church.  Noah’s hand shot up.   Today Noah got up on stage with four of his classmates to do the closing prayers.  Clear enough for everyone to hear, he said, “Dear God,  Thank you for sending Jesus to die for us.  Amen.”

Three years ago, this was what I wrote on the blog:

We know he will face a number of challenges yet such as interacting with his peers when he reaches school, having to speak in front of a class, learning to read and write which is generally a struggle for children with speech apraxia.  Yet we have hope for Noah – we know he has God given gifts and abilities that even now are flourishing, we know that sound by sound, syllable by syllable, word by word, he will learn to talk.  We know that as Noah learns to speak, we are being refined too – learning lessons in patience, grace, kindness, perseverance and hope.   Yes, I often wonder why it has to be so hard for him and I worry about school and the future.  But then I look back at how far he has come in 12 months and I remember the promises of God.   Jesus enabled the mute to speak and so Noah will too.  And one day we will hear him praise God himself.

Well, one day has arrived.  Now we do hear Noah praise God for himself.  In our Kidz Blitz program at our church a couple of kids are chosen to pray each week.  Last year, Noah was always eager to be chosen.  The only problem was no-one could understand him but me.  That’s no longer an issue.  He is also reading.  With daily work on phonics, the little boy who couldn’t tell me what he wanted on his sandwich three years ago is now reading me my bedtime story!

dsc_2357

Family Day Out on the Mountain – Noah, Mummy and Sam

Recently, our other son, Sam wrote about his little brother.  Sam is a great encourager of Noah and I thought this was very sweet.

Noah is my little brother.  Noah has Apraxia which is a speech disorder.  Noah is a boy and he really likes Lego. It took a while to build up Noah’s speech but it was worth the time.  Now he talks and talks and talks.  I think Noah has worked very hard at his speech.  I love Noah.  I think Noah is a very nice little brother to have.  (by Sam, age 9)

 I think Sam is a very nice big brother for Noah to have.  As a family, we have learnt a lot over the last few years.  I have definitely learned perseverance.  We had a child without a voice.  Now we have one who ‘talks and talks and talks’.  Having just completed another round of speech testing, we can see the huge growth over the last year.  So we press on.  The mountain peak is in sight.  A few more sounds.  More work on grammar.  Work on inflection and prosody.  It won’t be long and we’ll be waving from that mountain top and praising God for bringing to completion this journey to find Noah’s voice.

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.

Painting

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.

633

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

 

The Least of These

MMay the weak say I am strong,

May the poor say I am rich

May the blind say I can see

What the Lord has done in me.

This is the song that for me shows the extent of God’s love for the whole world and reveals the need everyone of us has for Christ, no matter where we are from.  Where ever we live and where ever we go, God calls us to join Him in reaching out to other people, even when the needs are overwhelming and we feel our contribution is inadequate.  I love that God has called me into the third world to serve and I love that God has called me into my home town to serve.

I see the mother, ravaged by AIDS, with a nursing baby and five-year old daughter lying on a bed in a remote Papua New Guinean hospital.  No support.  No help.  Waiting to die.  What of her children?  Who will help them?  Truly these are the weak and the poor.

IMG_3621

A suffering  mother and her 5 year old daughter.  Gulf Province, PNG.

I see the woman nursing an ailing husband at home.  There is oxygen tubing running to his nose, morphine liquid by the bedside, ready to be given when the desperation for breath becomes too much in a body fighting lung cancer and emphysema.  A palliative care team comes each week.  A well equipped hospital is nearby.  Still, this cannot keep at bay the heart sickness of a woman who will soon lose her best friend and life companion.  This is right here, in my neighbourhood, my everyday work.  The weak walk beside me.

I see the mother struggling to carry her six-year old son, concussed, drowsy back to our clinic.  I met the father earlier – proud of his family, eager to get his children immunised.  He is prone to rages and threw his eldest boy from the window of their hut on stilts. Across the field I see a woman struck to the ground by her husband with a heavy stick.  She makes no cry, simply gets up and walks away.  This happens frequently enough that no one takes any notice.  This is the ugly side of beautiful PNG.

IMG_3809

Transporting a 6 year old boy with concussion to hospital.

I see a mother, struggling with lightning pain shooting from her neck to her fingertips as bone and disc press on nerve.  I see her shadowing her grown schizophrenic daughter, dreading the harm she could do herself if left alone, fearing a call from the police, patiently accompanying her to appointments and hospital admissions where improvement is painfully slow in coming.  The daughter begs mum for alcohol and seeks comfort from men who only abuse her.  This is the pain of a mother in my home town.

I see myself struggling with what I can do to help in a world where so much is wrong.  I too am weak.  I can’t do much by myself.  But, I can do all things through Christ who strengthens me (Phil 4:13).  I can’t supply Papua New Guinea with a health system where all can receive treatment and welfare is provided to support the poor.  I can’t cure cancer or schizophrenia.  Yet I can do a little.  I can listen, pray and learn more.  I can bring some physical and emotional comfort, using my medical skills.  I can go to PNG and teach on health and health care.  I can encourage someone with suspected tuberculosis or AIDS to go and get tested…and treated…and perhaps their life and livelihood will be saved.  I can be part of a team bringing the love of God to people in remote areas by providing health care.

IMG_3641

Doing clinics in a hut.  Babaguna village, PNG.

IMG_3658

Women’s health talk. Demonstrating the birth process with the model placenta. This produced lots of giggles!

Whatever you did for the least of these brothers and sisters of mine, you did for me (Matt 25:40).  Where ever we live and where ever we go, we will encounter the ‘least of these’, the poor, sick, lonely and grieving.  We may find ourselves becoming the least of these when our own circumstances become desperate.  The wonderful thing about being a part of God’s family is that we can share the love He has given us in very practical ways.  God’s blessing is released through people willing to be His hands and feet in a hurting world.

IMG_3690

New friends – Irimuku village, PNG.  Elizabeth (white and blue shirt), age 16 wants to be a nurse.  She shyly watched me all day before I went to chat with her at the end of clinic.

 

Finding Noah’s Voice: Tears and Penguins

My little boy is brave. I was reminded of that today and the fact that he is a little boy. He has carried a burden that I sometimes forget is his burden, not mine.

Coolum 2015 173

Noah, age 5

Recently Noah started school. Most kids just have to get ready for school and go. Before we even leave the house, Noah has done a 20-30 minute session with me doing ‘talking practice’. Apraxia of speech means we have to do daily practice, practising words and sounds over and over. We do try to make it fun and most of the time Noah gives it a good go. Of course, we do have our off days where he’d rather do anything but speech or spends more time with his bottom in the air than on the ground! But most of the time little Noah works well, persistently and patiently.

I picked Noah up from school to drive to his weekly speech appointment. It’s a one-hour drive and we discussed why trucks have two tyres on either side to balance the load and the impact of failed brakes or a flat tyre. We went early so that he could play in the park and enjoyed a game of cops and robbers.

Today Noah went in, eager to get a game out and chose one where you need to balance plastic penguins on a teetering iceberg without tipping it over. He was so keen to play it properly and frustrated by being redirected to do his speech words. After all, that’s why we go to speech therapy! Today it was minimal pairs – L vs Y words, lamb/yam, lot/yacht. Apraxia means it can be hard for Noah to move his tongue into the correct position to make certain sounds. The will is there, but the message just does not get from the brain to the muscles. Until he has practised the movement over and over, it doesn’t come naturally and requires a huge mental effort to make it happen, visual prompts and verbal encouragement. Today he was told,”Tongue up, tongue up.” Or my version,”Lick the lollipop behind your top teeth.” These are the prompts for the L sound.

After a whole session of repeating L and Y words, sometimes correctly, sometimes not and trying again, it became a bit much for my little guy. On the last word pair – lard and yard, his tongue just would not cooperate and he cried. It’s the first time I’ve seen Noah cry in a therapy session in the last three years. He also cried,”When do we get to finish the game?” He just wanted to play the penguin game. This was a stark reminder that here is a 5 year old boy who just wants to play. He has carried the burden of his apraxia for at least four years. Talking comes naturally to most kids. They don’t have to spend hours and hours and hours of their childhood doing speech drills and games and therapy. This little boy must work every day. We’ve had many victories and seen big improvements in his speech. We are incredibly grateful to the speech therapists who have helped Noah to get this far. Today I wanted to cry with my little boy, toss the speech work aside and play penguins.

So what will we do? We will encourage Noah. He has been doing so well. We will let him rest and play and run and laugh. Although we do therapy every week and speech practice daily, Noah has plenty of time to play as well. Tomorrow we will give it another go at home. We will keep it relaxed and make a game and a joke of it. We’ll call out,”Naughty tongue!” when his tongue won’t go up. We’ll practice licking lollipops behind our top teeth. By next week, that L sound will be in good shape. And this weekend, we will go play the penguin game. I’ve seen the same game at church and Noah can have the joy of toppling all those penguins off the iceberg without any flash cards in sight. We will laugh instead of cry.

PS. We tried again today (the day after this post was written) and Noah rocked it.  A couple of slips of the tongue, but pretty accurate L and Y sounds, a positive attitude and no tears.  We did our practice out in the garden for a change of scenery.

The Miracle of the Amazing Dust Particles

Noah: Mummy, Mummy!  Where are you Mummy?

Me: Here I am.

Noah: Come quickly.  See something AMAZING!

Me: What is it Noah?

Noah: The dust is swirling round and round!

Noah has noticed dust particles, highlighted by the sunlight streaming through a window.  The dust particles are moving in circles, caught on invisible currents of air, just like the eddies we see in the water of a stream.  I pause to watch and wonder – a beautiful moment, perhaps occurring everyday and long escaping my attention.  I pause to laugh – this boy!  This boy who could barely put two words together two years ago.  This boy who has struggled to speak.  This boy who proudly told everyone just 12 months ago, “Merry Tismas e-ry body!”  This boy who is expressing his thoughts and showing me the world he sees.

Coolum 2015 176

Noah, Coolum Beach 2015

This boy.  His name is Noah.  He is five years old.  He was born with severe Childhood Apraxia of Speech, a neurological condition that impacts on his brain’s ability to send messages to his speech muscles.  He has long struggled to communicate and has now completed three years of speech therapy.  We have celebrated new words, two word phrases, the first sentence, the first lie, the first whys, the first stuttered stories.  And now, Noah has moments where he speaks like the little boy in my dreams so long ago, the little boy who chattered without difficulty, clearly and easily telling me about his day.   The little boy who caused my heart to leap with joy, only to be crushingly disappointed when I awoke to the reality of a toddler who could only cry over his frustrated attempts to talk to me.

This boy.  Noah – you are amazing.  You persevere.  No one I know has worked as hard as you to speak.  You get better everyday.  You are finding sound combinations more easily.  We are moving into the territory of grammar.  You speak your sentences as best you can with the words you have.  Slowly we are working out the intricacies of language – how to phrase questions versus answers, personal pronouns, plurals and tense.  I correct you as we practice, “She is climbing.  She climbed.”  You try again and say, “These sounds are tricky.”  You are right.  I hug you.  You try so hard and we push you more.  You’ve been corrected more on your speech than any child of your acquaintance, but you take it so well.  You accept our efforts to help you speak more clearly.  And it makes we want to cry sometimes.

I want the journey to be over.  I want to say apraxia is behind us.  But it’s not.  You’ve gone from severe to moderate and I am elated.  I can’t wait to announce that you are mild, one day in the not so distant future.  Each step forward in communication reveals a new challenge…and another…and another.

Let’s not dwell on that for now.  After all, there are dust particles to admire.  There are Santas to talk to. There are stories to be told.  Stories of helicopters, pirates, Papua New Guinea boats, space ships, police and robbers and more.  There are songs to sing – the ones you make up so beautifully.  You praise God in your own sweet voice, making up words that express your love for him. God is good.  We’ve prayed and hoped for so long to see you come to this point of freely communicating and we have seen those prayers answered.

Miracles do happen.  Mostly these are not spontaneous healings where the touch of God is like a bolt of lightning.  Most miracles unfold slowly, like the petals of a beautiful rose.  These miracles are only revealed when we pause to reflect on a long journey, appreciating the touch of God that has helped us to persevere through times of seemingly little progress, looking back to see how far we have come and celebrating what has come to pass.  For nothing is impossible with God (Luke 1:37).

In just two months, Noah’s speech has greatly improved.  I couldn’t believe the difference in Noah’s speech in a video I took about 2 ½ months ago compared to one I took a couple of weeks ago.  Here he tells us about some of the Lego helicopters he has built up.  Below I repost the original video for comparison.  I hope you enjoy it as much as we did!

Noah – September 2015 (video 1)

Noah – November 2015 (video 2)

Me, Mum and the Scuba Diver

Dear Noah,

We are reaching a strange stage in our apraxia journey.  Progress is both poignant and a little painful.  You are expressing yourself much more and piecing together descriptions and explanations.  You are also starting to let go of some speech patterns that are so cute and make you seem younger than you are.  Our little boy is growing up.

Noah, age 5. Gone sailing!

Noah, age 5. Gone sailing!

For many months, you have said ‘me’ instead of ‘I’ and I have constantly reminded you to say ‘I’ instead of ‘me’.  “Me want biscuit.”  “Me going outside now.”  Now a few days have gone past and I realise I haven’t corrected you on it once.  ‘I’ is the new ‘me’.  No more,”Me love you, Mummy!”  In fact, I got,”I love you, Mum!”  I’m not sure I’m ready to be ‘Mum’ instead of ‘Mummy’.

Now I stop and marvel every time you explain something you are learning or thinking about.  You were watching a video about scuba divers with Daddy the other day and you were able to tell me all about it.

“Scuba diver has camera on his wetsuit.  Can take photos underwater.  Send to scientists…and police…and news people.”

This is new territory.  The grammar isn’t perfect.  Pronunciation of longer words is difficult.  Yet we can understand so much more.  I can still see you working and concentrating so hard on getting each word out when you’re talking about a more complex topic.  You have to concentrate on the word order and the motor planning of each word.  You think through words that need a consonant sound on the end and add it emphatically.  “The boa-t is in the water.”

It turns out you have been taking in a lot of information and storing it in your mind.  You distinguished that Mummy is a “hoo-man doctor” as opposed to an “animal doctor” when I came to talk to the kids at kindy.  You told me about breathing,”Need air.  Need o-y-gen [oxygen].”  You also gave me the low down on toilet hygiene,”Need to wash hands when I do a poo.  Poo has lots of germs.  Wee has not much germs.”  Good job!  I take a little professional pride in seeing you putting germ theory into action.  You hold way more vocabulary in your mind than you are able to say correctly.  Now that you can sequence many more sounds and syllables, you are giving these words a crack.  Sometimes we have a game of 20 Questions to work out what you mean because sound substitutions mean some words sound like other words eg ‘blue car’ versus ‘gui-tar’.  We have to beg for clues sometimes so we can get the context.  We often get berated with,”No! Not talking ‘bout …..  Talking ‘bout ……”  We just have to make a joke about our ears not working properly and work it out.

We are so proud of the progress you are making, Noah.  I can’t believe your first sentence was 18 months ago.  What a long way you’ve come!  I am happy to be hearing your voice, not the voice I used to dream about, but your voice.  I love your stories and joining in your imaginary games.

Love Mummy

PS. Below I have included a video of Noah telling me about the helicopter he is making.  I can understand most of what he says.  He talks about the rotors and how it makes the helicopter fly, how the scuba diver can go out the back door to swim in to the ocean for his mission and how the submarine can take photos and go down to look at a pirate ship that sunk long ago.   We realise Noah’s speech is difficult to understand if you are not used to hearing it.  We celebrate each little gain he makes.  Enjoy!

Noah with his finished lego helicopter

Noah with his finished lego helicopter

I’m all effed out. The c says ‘k’. The best speech appointment ever.

New term.  New goals.  New sounds.  Thank goodness.  As I told Miss Sally, your speech therapist, “I’m all effed out.”  Yep.  Been doing /f/ words for too long now and I’m sick of saying, ”Bite and blow.”  F-initial, f-middle and f-final.  Time to move on.

Miss Sally tells me we’re going to try /k/ because that will increase the intelligibility of your speech.  But it could take two years to master as it’s a tricky sound for kids with apraxia.  She pulls out a tongue depressor and pops it on the front of your tongue and asks you to say /k/.  After a few goes, you can do it!  In fact, you grab the tongue depressor and start pressing down on your tongue with it while repeating /k/, /k/, /k/.  You’re like a gym junkie pressing weights.  Miss Sally then gives you a few words with the /k/ sound on the end.  The tongue depressor gets popped into your mouth at the end of the word to elicit that elusive /k/.  And you do it well.  You are very happy when you are given your very own tongue depressor to take home to practice with.  Within a couple of weeks, we don’t even need the tongue depressor anymore!

Noah enjoying a sail on grandad's boat

Noah enjoying a sail on granddad’s boat

Miss Sally also decides to try some /s/ blends.  Usually your /s/ gets dropped at the start of words with an /s/ blend, so ‘snake’ becomes ‘nake’.  Up to this point you have never been able to produce blends.  Yet with the help of a picture of a snake to remind you to say /s/ followed by another picture, you are soon saying a few words with /s/ blends – spot, spoon, snow, sneeze, sneak.

I leave feeling real proud and elated.  You, my little superstar have reached two speech goals in one session – a difficult throat sound and your first blends.  I want to tell everyone, but know they will think I’m crazy to be so excited over these little steps in your speech development.

I think Childhood Apraxia of Speech is like a puzzle.  Each piece of the puzzle is a different speech sound.  At the start, we only had a handful of pieces.  We’ve had to find and add in more pieces along the way, gradually building up your repertoire of sounds.  Each piece may need to be worked on and fine-tuned for weeks or months before it fits securely into the puzzle, only to pop out again at obscure times.  Then we have to link each sound to the others, creating all the sound connections needed – /m/ is not learnt in isolation.  We also have to practice /ma/, /me/, /mo/, /moo/.  Initial, middle and final sounds must all be mastered in simple CVC words.  Two and three syllable words are practiced slowly to get the right sound transitions and later to get the right emphasis.  All the puzzle pieces are intricately connected in an even more complex way than those 3D puzzles.

Mummy and Noah

Mummy and Noah

The intricacy of speech.  I think it’s amazing.  I never realised how complex the movements are that our mouths, tongues and lips do to produce speech until I had you, Noah.  It’s a wonder any of us ever learn to talk without intense help.  We’re so unaware of the complexity of speech when it comes easily to us.  But you’ve had to learn the intricacy of the movements from scratch.  At the start, you had vowels and /m/ and a lot of /d/ – so many words were “da”.  Whilst the puzzle is not complete yet, we’re adding more pieces and making more connections with the guidance of your speech therapist and the hard yakka of daily practice.  In years to come, you may not even remember the struggle or the hours of practice.  You’ll simply have the completed puzzle, perhaps with a few missing pieces and the ability to produce speech as effortlessly as most people.  I will smile and remember the work that went into putting that puzzle together and the special bond we’ve had because of it.  Together we’ve learnt a language that goes beyond love.

Through the Kindy Gates – Apraxia Awareness 2015

Dear Noah,

I arrive at your kindy, midway through a Wednesday to pick you up for your weekly speech therapy appointment.  As I go to ring the doorbell I have a glimpse of the children playing in the garden through the metal railings.  I hear uproarious giggling.  I see a flash of green shirt darting under the fort to hide.  It’s a game of chasey.  And it’s you, Noah.  Playing with other children and laughing.

A year ago you would be quietly playing by yourself in the dirt pit.  Digging, building, always gripping the toy tool box as if your life depended on it.  Today, I’m told you agreed to share the tool box.  You no longer cart if everywhere with you during play time as a security blanket in a world where you cannot verbally communicate.  That’s no longer your world.

Your world is opening up.  Words are coming thick and fast.  You’re mastering sentences and sounds.  You’re gaining confidence and talking with other children, not just the teachers.  And you’re showing us so many things you have learnt.

Noah and his Training Buddies

Noah and his Training Buddies

Another day you are out on the verandah making play dough.  Your teacher is showing everyone the recipe.  I’m about to leave and hear her ask, “Does anyone know what number this is?”  I hear a little voice pipe up, “Four!”  It’s so clear.  There’s an /f/ sound at the start – a sound we worked on for weeks this year and weeks last year.  I pop out to see who answered as I wasn’t sure it was you.  Your teacher smiles and says you picked out the number four.  It was you.

You are no longer that two year old boy, crying, frustrated and unable to make your mouth cooperate with what you wanted to say.  You’ve worked hard to develop sounds, syllables, words and phrases.  You’ve put up with Mummy drilling you again and again.  “Say it again.  Bite and blow.  No, bite and blow. F-f-four.”  You’ve tolerated my hands on your face, showing you how to position your lips, teeth and tongue to produce different sounds.  You’ve followed and copied hand signals that cue target sounds.  We’ve worked our way through 5 scrap books of speech activities provided by your speech therapists…and you still ask for the ‘tool one’ which was one of the first!  I know you get tired of it sometimes, yet most of the time you suck it up, give it another go and cooperate to get better at something that is so difficult for you – talking.

We hear you, Noah.  At age 5, you amaze us every day.  Tenacity.  Perseverance.  Creativity.  Focus.  Cuteness.  You’ve got this and more.  We know we still face a lot of challenges and much more speech therapy to get those missing sounds, tricky sound transitions and clear multisyllabic words.  As a wise person said, “Apraxia is a marathon, not a sprint.”  I’m happy to be your training buddy.  We all are.

Love you lots,

Mummy

PS.  Noah’s video message for Apraxia Awareness Day May 2015 – this is the first year Noah has had enough speech to attempt a video.  He said his first sentence on Feb 14, 2014.  This was done May 12, 2015

Finding Noah’s Voice: The Carpenter

Jesus was a carpenter.  Before he began his ministry, this was his trade, taught to him by his earthly father.  Noah was amazed to hear that Jesus was a carpenter.  When I first told him this he looked excited and said,”Really?” Noah is five years old and loves tools.  He always has, ever since he could pick them up.  Early presents of toy tool boxes and a tool bench have been his favourite toys.  He takes every opportunity to siphon off tools from Daddy’s toolbox to add to his own collection and is often found undoing screws with a real screw driver.  Bunnings is his favourite shop and he is always asking for another toolbox – the bigger the better.  When he grows up, he wants to be a ‘tool-man’. Recently, Grandad got a new shed.  Noah is very impressed with his new structure.  This Grandad has never really been a big handy man; more a potterer.  However, in retirement he has realised a dream – a man cave, a place to play with tools.  Noah has already been over to help construct his very own mini tool bench out of scrap wood, old nails and finished with a coat of white paint.  He couldn’t be happier with the result.  As long as he can swing a hammer, line up a ruler and draw a line or screw something together, he is happy.

Noah at work in Grandad's shed

Noah at work in Grandad’s shed

We appreciate the ability our little chap has with his hands, a wonderful strength when contrasted with his speech difficulties.  He is still working his way through the challenge of developing clear speech and working out the rules of expressive language.  Noah was born with Childhood Apraxia of Speech which means that his brain has trouble planning the precise movements that are needed for speech.

Over the last three years Noah has been a work in progress as we gradually accumulate the tools and skills needed to help unlock his voice and ability to communicate. This is a complex process because this is a severe speech disorder that affects the ability to produce every sound and every sound combination.  Each sound has to be separately learnt and practised – in isolation, then in combination with other sounds, moving onto words, short phrases and finally sentences.  A sound that is mastered on its own may be lost when Noah tries to say it in a word or a sentence.  We painstakingly practice each word and then through hand signals and touch cues help him to say it in a phrase or sentence, gradually removing the cues until he can say it on his own.  Noah has gradually added more sounds to his repertoire, but is still missing some key sounds.  These get substituted which makes it difficult to decipher what he is saying at times, especially with longer words or sentences.  This can lead to frustration because Noah has so much he wants to ask and say now.  Even though I understand him better than anyone, I still get stumped.  But Noah is resourceful and can find other ways to get his point across.

For example, yesterday we had this conversation.

Noah: Show me pi-ture of tar-tle?

Mummy: Turtle?

Noah: No!  Tar-sle.

Mummy: Dark Stool?!!

Noah: runs to get a piece of paper and draws picture of castle.

Mummy: Oh – castle!

Noah: Yes, with tur-et!

We then googled pictures of castles and discussed turrets, battlements, moats, royalty and knights.  He has been fascinated by castles lately.  Today we built one in the sandpit using broken bricks for turrets.  I got to be the princess! Noah and I have to be patient with one another as we continue to work on his speech.  I have to listen and reflect back what I hear and help him correct his articulation.  Noah has to try again and again to communicate if I don’t get it the first time, or second or third time. The work for Noah is not yet done.  The final piece will be amazing, no doubt.  He is learning to speak his mind.  We are learning to listen and rejoice because he is talking, imperfectly but beautifully.  Beautifully because we waited so long to hear his little voice.  He will grow up to work with his hands and take his place in this world.  So I finish with a prayer Noah recently offered up, simple but beautiful.

“Dear Dod (God),

Help me make things when I grow up.

Help me be dood (good).

Amen.”

Noah is in the hands of the ultimate carpenter who is able to do a work in each of us more amazing than a physical healing because His work lasts for eternity.

Finding Noah’s Voice – The Christmas Gift

We started the year with one question: Would this be the year that you would talk?  Really talk.  200 words.  That’s what you started the year with.  I know.  I made the list and counted them.   Some of them were even being put into two word phrases.

I dreamed a dream.  You spoke.  Not just a word or two, but sentences.  Flowing sentences.  In my dream I heard your voice and I was happy.  Until I awoke and realised it was just a dream.  I was yet to truly hear your voice.

Well, somewhere in the course of the year, the miracle happened.  You started to speak.  Who could forget the first sentence:  IWANCHEE.  I want cheese.  This followed months of practising the phrase,”I want …” with each word being individually prompted.

We prayed and this is the verse God spoke to me:

1 Chronicles 28:20

Be strong and courageous and DO THE WORK.  Do not be afraid or discouraged, for the LORD God, my God is with you.  He will not fail you or forsake you.

We buckled down.  We’ve done the work each day – repeating sounds, words, phrases again and again.  And work turned into magic.  You started to talk, putting together phrases and sentences to tell us what you needed, what you wanted and then simply to tell us what you thought.  We’ve been discovering you.

We now know your favourite colour.  We know when you’re unhappy with your brother and why.  I know that you love me – you said it.  I know what you do when I’m not with you, because you can tell me.  We even know that you want a jackhammer for Christmas!

What a year, beautiful boy.  You’ve done it.  You found your voice.  Now we hear you.  What a wonderful Christmas gift and blessing and we thank God for that over and over.  And so, from all of us and especially from Noah, unprompted and with his own voice: “Merry Christmas everybody!”