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

 

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.

Finding Noah’s Voice – Rainbow Lorikeets

Dear Noah,

In later years, I hope you will have memories of warm autumn afternoons under halcyon blue skies, spent in our garden, simply enjoying all that God has created.  Halcyon.  What does that even mean?  Peaceful, gentle, calm.  Happy and carefree.  All that I hope your childhood will be.  The English language has so many words of subtle difference in meaning that allow us to express so many shades of an experience.  And I wonder what you would express…if you could.

I sat with you in the sandpit, fingering the sand while you moved diggers and dump trucks and used a bucket and spade to create a quarry, accompanied by the sound effects that only four year old boys can make.  I looked up at our Bottlebrush tree, the bright red flowers and deep green foliage standing out against the blue of the sky.  Soon a flock of rainbow lorikeets arrived, chattering excitedly as they fed on the nectar of the bright blooms.  I pointed out the ‘rainbow birds’ to you, their colours and how they got their food from the flowers.  You can’t ask ‘Why?’ yet, so I try to guess what you would ask if you could.

091

Rainbow Lorikeets

 

You were entranced by the beautiful birds with their feathers of green, red, blue and yellow.  Jumping up and down, you waved your arms in wide circles to tell me that you wanted to be picked up and put in the tree to be closer to them.  I explained that this would scare them and they would fly away.  The best way to see them would be to crouch quietly by the tree and just watch.  I went inside, leaving you to play.  Cheeky boy!  You didn’t follow my instructions.

Soon you came in side, visibly upset.  Usually a game of ’20 Questions’ follows as I try to work out what has happened.   Yet this day, you said,

”Bird….wings (making flying movements with your hands).  Fly…away.”

A simple, yet breath-taking moment.  You communicated, for the first time, an experience that I had not been on hand to witness.  I understood without needing to ask further questions to clarify.  The rainbow lorikeets had flown away and you were upset about this.

I don’t believe anybody outside our family would have caught the words.  But I did.  Spending more time with you than anybody else, has made me attuned to your way of communicating.  I intimately know your speech patterns at any point in time.  Without words, I’ve had to tune into your moods, tone and expression, gestures and demeanour.  In many ways, I realise I am still your interpreter, deciphering those imperfect, yet precious words of yours for other people.  You understand so much, but are still unable to put most of your thoughts into words.  Little by little, your brain is learning how to send signals to your mouth muscles to form speech.  The thoughts held prisoner in your head for so long are starting to be set free and take flight, much like the rainbow lorikeets.  I’m looking forward to discovering more of the beauty that is you, Noah.  In the meantime, I’ll hang onto this precious bond we share – learning a language that doesn’t need words.

I love you, buddy!  Here’s to many more afternoons spent under those halcyon skies…blue skies…or as you would say,”Boo ky”.

Love Mummy

Beth and Enwah – PNG and the fight for life

Papua New Guinea lies on Australia’s doorstep.  I have visited twice now and will be returning later this year.  Increasingly I find myself thinking about PNG and her people, especially those that I have met and talked with and briefly shared life with.  Beth, a young mother, and her newborn son, Enwah are two of these people.  Enwah, like many babies in PNG began his fight for life very early.

My time in PNG was spent with a medical ship that takes health professionals to remote areas along the southern and eastern coast where basic medical care is not easily accessible to most people.  PNG is mountainous and covered by thick jungle.  In the Gulf Province and Fly River system in the west, most people travel by dugout canoe along the intertwining river systems.  Roads are few and far between and often in poor condition.  With 88% of people living in rural areas and health facilities sparsely distributed throughout the country, most people with a serious health problem will not have the chance to be treated in a hospital.

Jungle along the Oriomo River

Jungle along the Oriomo River

In 2011, I was part of the primary health care team on the ship.  This was my first journey to PNG.  The ship sailed 27 hours from Port Moresby to the Western Province where we anchored off Daru, the capital.  Each day we would travel by zodiac (inflatable motor boat) from the ship to a village or settlement where we would set up our clinic for the day.  Our role included seeing and treating people for a variety of medical conditions, vaccinations and health education.

The last two days of clinics were to be spent at a village named Abam, well up the Oriomo River.  The only way to reach this village was via the river.  Floating debris had to be skirted carefully to avoid catching the propeller and resulted in many a disappointed attempt to spot a crocodile!  Along the way we passed dense jungle, traditional villages and smiling families in dugout canoes.  The people of this area hunt, fish, harvest sago and grow vegetables, much as their ancestors have done for centuries past.

We received a warm welcome from the villagers who helped us unload our gear and mount the steep banks.  They gave us the use of their school house for the clinics, a two storey building made from traditional materials and surrounded by lush green lawns.  There were dirt floors, blackboards and desks with benches made from planks of rough wood.  Most of our patients presented with conditions seen frequently in Australian general practice – respiratory infections, diarrhoea and musculoskeletal problems.  However in PNG, a flu-like illness could easily be malaria or a chronic cough, tuberculosis.

On our final afternoon, riotous laughter drifted through the school house windows as some of our team played with the children on the lawn, turning skipping ropes and blowing bubbles.  Not long after, I was called to see Beth and her newborn baby, Enwah, only 10 days old.  Enwah nestled in a colourful blanket, crying weakly, skin taut across his tiny skull, with the wizened appearance of marasmus.  Beth and her parents had left their village, further up the river at 5am that morning, having heard about the visiting medical team.  We settled Beth into the storeroom with our team leader, Jennifer.  I advised them on how to express some breast milk and syringe feed the baby.  While Jennifer helped Beth to feed Enwah, she told us her story.

Jennifer feeding Enwah

Jennifer feeding Enwah

Beth had been attending high school in Daru, capital of the Western Province, but became pregnant at age 19 and returned home to live with her parents.  She worked hard and ate little on the advice of her mother in the hope she would have a small baby and easier delivery.  Beth received no antenatal care.  Eight months into her pregnancy, Beth became ill with a fever and went into premature labour.  She delivered a baby boy, Enwah.  After a few days, he became ill and stopped feeding at the breast.  Beth tried to spoon feed him for the next six days; however Enwah took very little orally and continued to grow weaker.  Enwah had now been ill for six days and had not fed for 24 hours.  He was severely dehydrated and malnourished.  Beth and her parents were distressed about Enwah’s condition.  The nearest healthcare facility was in Daru.  Their only mode of transport was dugout canoe.  It would take nearly two days to make the journey to Daru, paddling day and night.

After discussion with Beth and her family, it was decided that mother and baby would return with us to Daru for transfer to the hospital.  Beth’s parents would follow in their canoe.  This journey would take 1 ½ days in dugout canoe from Abam.  The same trip would only take one hour in the zodiac.  We prayed for Enwah as we set out for Daru.

Dugout canoes, Oriomo River

Dugout canoes, Oriomo River

Jennifer accompanied Beth and Enwah to the hospital and visited them the next morning to check on their progress before our departure for Port Moresby.  The doctor’s initial attempts to insert a drip into Enwah’s collapsed veins were unsuccessful.  Overnight, he developed vomiting and diarrhoea and continued to be syringe fed with breast milk.  Eventually an intravenous line was inserted.  By morning, he was crying more strongly.  It seemed as if Enwah had turned a corner and the doctor was more hopeful of a positive outcome.  I believe Enwah would have died if unable to get to the hospital.   Another day, he would not have had this chance.

Maternal mortality rates in PNG are among the highest in the Pacific at 250/100 000 live births1, compared with 8/100 000 live births in Australia2 (2009).  Child mortality is also high in the under 5 age group at 68/1000 live births1 compared with 5/1000 live births in Australia2 (2009).  It is not my aim here to address solutions to this problem, simply to share the story of Beth and Enwah, who for me have personalised the challenge of delivering health care to remote communities.  After our return, Jennifer tried to find out what had happened to Enwah.  The only information we were able to find out was that they weren’t at the hospital anymore.  We don’t know what the final outcome for Enwah was, only that he was given a chance that day that normally would not have been available to him or his family.

  1. Global Health Observatory, World Health Organisation.  Papua New Guinea – health profile (2009).
  2. Global Health Observatory, World Health Organisation.  Australia – health profile (2009).