When Words Will Not Come: A Journey of Verbal Dyspraxia. ~ Leah Boonthanom

Via Leah Boonthanomon Oct 11, 2013

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At the beach the other day I heard my three-year-old daughter Indica wail for another movie, when what she actually wanted was a banana smoothie.

Another time at the playground I heard my five-year-old son Serentai ask me to go on the slide, when actually he was eagerly suggesting, “You count, I’ll hide. “His happy face deflated when instead of closing my eyes, I dragged him to the top of the slippery dip for a stacks-on downward ride.

Misunderstandings like these are commonplace in our family, but not because there’s anything wrong with me or my husband Steve’s hearing.

Our kids have verbal dyspraxia (commonly referred to as childhood apraxia of speech (CAS) in the United States)—a neurologically based, motor planning developmental speech sound disorder which is most prevalent amongst young children. Their brain knows what they want to say, yet struggles to tell their mouth how to execute it, and praxis means planned movement.

Instead their searching, groping tongue and unsure lips produce adulterated sounds that result in many unintelligible words.

Beginning sounds are easily sabotaged, and middle and ends commonly omitted. For many years milk was “glup” and apple was “gappu” to our son, not to mention the “buh-fie” or butterfly that is still “webbo”—yellow—for our daughter.

There’s no predictability. Their errors are ever-present and inconsistent.

Verbal dyspraxia is unique from typical speech delays in that the child easily understands all that is said and knows how they want to respond, only to be thwarted by their oral motor skills. This also means they often tend toward short two-word demands such as “drink please,” over longer structured sentences.

Dyspraxia presents itself from birth and is suspected to be genetic—although Steve, a surfer and successful marketer, can speak underwater and I too can be vicariously verbose.

How then did we create two beautiful children for whom words will not easily come?

Serentai’s first word, naana, was uttered at 15 months old in the fruit and vegetable section of a supermarket as she was strapped to my back in an ErgoBaby, but it has yet progressed to “banana,” despite devouring them daily for breakfast. Other favored staples—cucumber, vegemite and avocado—similarly elude him.

This difficulty with multi-syllabic words is quintessentially dyspraxic; though he struggles less to summon his beloved indargo (a.k.a. Ninjago) who loyally fights every battle beside him.

When Serentai was 18 months old, we hoped the solution to his missed verbal milestones might be as simple as treating his moderate tongue-tie (a.k.a. ankyloglossia) given the tongue is the most important articulator of speech. While expensive (though in retrospect roughly equivalent to one term of private speech therapy), his frenotomy was performed using laser dentistry because it didn’t require general anesthetic or stitches. It was performed with me nursing him in a suburban dental chair, which made little difference.

Post-surgery our son was soothed with lemonade icy poles as a sugary placebo for his ailing speech. Afterwards I took him to Macquarie University’s audiology clinic to listen for aliens dropping marbles and puppets popping up from the control room, where he passed with flying colors.

At age two he started seeing a South African speech therapist who tried to coax his words with colorful plastic cars, but he struggled to shift into first gear. Shortly before his third birthday, we switched to a speech therapist who visited our home with handmade finger puppets and shoebox houses to encourage specific sounds. It wasn’t until Serentai neared four years that he was formally diagnosed with chronic verbal dyspraxia, and this is due to the complexity of the disorder and the challenges of classifying pre-lingual children.

Despite accepting our son’s speech delay as a long-term condition, it was easy to deny our daughter Indica was weathering the same storm. After all, they say lightning rarely strikes twice in the same place, and verbal dyspraxia affects less than one in 3,000 children—eight times more boys than girls.

At two and a half years old Indica was speaking better than her brother had been at the same age; albeit lagging behind her loquacious peers. Optimistically we hoped she might be mimicking her brother, until three months later her dyspraxia was also clinically confirmed.

The Australian Dyspraxia Association’s website refers to verbal dyspraxia as a hidden handicap because there are no obvious outward markers, but I beg to differ as my kids’ tears, anger, and sometimes shame at being infinitely misunderstood are obvious—even when they try to hide away from the world.

Serentai often gets angry if I ask him to repeat what he said, especially if probed a third or fourth time no matter how subtly or kindly. He explodes at me, darkly imploding on his frustrated self and grinding his teeth so furiously that his father and I fear long-term damage to his jaw.

At other times when talking is too hard, Serentai will simply shut down and turn to his HotWheels, mumbling that what he said “doesn’t matter,” but of course it matters—the thinking, feeling, hurting medium more so than the message.

Indica marches to the beat of her own drum and never likes being told no, yet stubbornly her mouth refuses to acquiesce and produce the words she wants to say.

Simple interaction is seldom simple and she never seems to reach a satisfying full stop—except when hosting tea parties for smiling dolls who expect nothing more than two tiny teddies on their porcelain saucer.

If pressed by real life people to repeat what she said or wants, Indica often claims “I don’t know” when adding “how to tell you” would be more truthful.

Though cavalier when falling over in the playground, being tripped up by her tongue easily cascades tears.

At times I’ll pretend to understand what our kids are saying, nodding my head and cooing, “Really?!’ and “Wow, then what happened?” in order to keep their dialogue flowing and free of exasperated self-consciousness.

Whenever this tactic fails, we flail about in a voiceless void with me trying to comprehend and comfort my children, relying entirely on their emotions. However there’s a fine line between being positive and encouraging, and merely prolonging their pain.

Like a novice deep-sea diver, I’m infinitely equalizing my oxygen tank, and at other times, hesitantly holding my breath.

The great linguist, philosopher and political writer Noam Chomsky believes children are born with the innate ability to learn their mother tongue without being explicitly taught.

Supporters of this theory consider language to be syntactic knowledge, as second nature to children as embryos growing arms.

On the other hand, the renowned psychologist, philosopher and author B.F. Skinner believed language is learned via environmental influences, namely positive reinforcement of words pronounced and used correctly. Supporters of this theory uphold that speech is a motor skill that’s learned like learning to ride a bike.

The prescribed treatment for verbal dyspraxia is intensive speech therapy, ideally every day at home and with some recommended three to five sessions per week with a speech therapist. Often, referral to an occupational therapist for non-speech, sensory or fine motor issues is also appropriate.

In using rote repetition, the aim is to train our children to remember how to produce distinct sounds, (phonemes). Often these sounds are linked to visual cues, such as a snake hissing for ‘s,’ a baby sleeping for ‘sh,’ a puppy panting for ‘h,’ a tap dripping for ‘t’.

Worksheets list words with target phonemes positioned at the beginning, middle and end before progressing to more complex blends. Longer words are tackled by patiently clapping out and counting every syllable.

Our speech therapist of the past two years maintains the key to overcoming verbal dyspraxia is over learning all the sounds.

Many sounds are revisited again and again and again.

/I/ as in ‘lick’ is one of the hardest, and to help coax our children’s tongues up to the right position, we swathe honey or peanut butter on their hard palate just behind their two front teeth.

/k/ as in ‘carpet’ is achieved by laying on the floor to help their tongue fall to the back of their mouth.

/f/ as in ‘fox’ is attempted by sitting in front of a mirror to mimic rabbit teeth biting down on their bottom lips.

Our reflection forms a bittersweet family snapshot; the three of us peering at each other with screwed up Bugs Bunny faces and determined overbites.

Years of doing basic speech exercises have slowly helped to improve Serentai’s articulation, including mastering the phrases “it’s too hard,” and “I’m too shy,” and “I don’t want to do it.” Some days it’s a massive struggle to get back on the bike, which leaves me wondering if I’m not doing enough or—shudder, shudder—pushing too demonically.

When I resisted speech therapy for our son following his frenotomy, our family doctor empathized with my desire to let him develop at his own speed, but at the same time worried he’d fall too far behind his peers without early intervention.

Today, our kids’ speech is still way off what’s considered “age appropriate”—a clinical euphemism that could just as well be referring to their table manners. Our local primary schools—public, private and independent—don’t offer targeted support for students with verbal dyspraxia, so even though Serentai turned five last New Year’s Day he still returned to pre-school.

While holding children back is commonplace in our state, some people—teachers included—tried to persuade us to do otherwise based entirely on his age.

Dyspraxia impacts on a child’s literacy skills, but doesn’t affect their intellectual ability to learn. We remained steadfast in our belief that opportunities for authentic emotional development far outweigh chances for academic achievement.

Thankfully, the past nine months have helped strengthen Serentai’s speech and more importantly his self-esteem.

Last year Serentai’s pre-school received a government inclusion subsidy to assist with his special needs. This funding helped cover around two-thirds of the cost of employing an extra staff member for five hours a day on the days he attended and the pre-school unwaveringly paid the balance.

The goal wasn’t one-on-one hand holding for my son, but a higher carer-to-kid ratio so that everyone—including Serentai—could fully participate in all activities without being waylaid by his additional needs.

This year he wasn’t eligible. Instead, Serentai is receiving the maximum number of speech therapy sessions possible via the Australian public health system, based on the severity of his condition and the fact he’ll start primary school in 2014. Afterwards this government entitlement will forever cease.

Indica, because she’s younger and her dyspraxia is less severe, gets 12.

Our children also qualify for Medicare rebates on five private sessions. Our private health fund, which costs over $250 a month, provides up to $600 a year per child for speech services—not forgetting this maximum limit is quizzically combined with unrelated services such as psychology, occupational therapy, natural therapy and podiatry. Some families simply can’t afford treatment.

Periodically I wonder if their dyspraxia is my doing, despite rationally knowing otherwise.

What if I’d spoken more to them as infants, read more to them as babies, persevered more with mothers’ group play dates, not skipped their speech homework last weekend—overall, been a better mum?

These what ifs moments wake me late at night, so instead I must focus on all I’m doing right today.

Ironically, we gave our children unusual multi-syllabic monikers which, even when pronounced correctly, cause most people to say, “come again?”

Serentai, born of serendipity and my birthplace, and Indica, a wild purple flower, aren’t your average “Joes,” however they are wholesomely Australian; proffering abbreviated versions of their names to those who can’t decipher their spoken longhand.

Our son shyly tells enquiring strangers that he has two names—Serentai and Tai—and once told a child psychologist he prefers the former. But whilst she strived to understand him, others sometimes wonder if he’s speaking another language.

Years ago, we attended a toddler’s speech therapy group course dominated by multicultural mums speaking Portuguese, Japanese and Mandarin. To my surprise, many lamented their three year old readily spoke their mother’s first language but struggled greatly with English—often urged to habla, or 話す hanasu and 说话 shuōhuà; to speak!!!

These fledging bi-linguists had succumbed to the more exotic command; their palates whetted in the womb. I didn’t understand these mothers’ panic—after all, I thought, Isn’t a bird in the hand better than two in the bush?-–until I realized they too felt their kids’ social exclusion.

Maybe having a speech disorder is like trying to converse in your native tongue on foreign soil.

I once tried to buy the contraceptive pill in Beijing, miming a pregnant belly and vigorously shaking my head, only to be ignored. In the context of China’s one child policy, the dismissive pharmacy staff probably thought I wanted RU-486.

Another time, I tried to buy a Delhi belly blocker for my husband during an overnight bus trip to the Taj Mahal. In a little clinic down a dusty alley, a mustached man conferred with some other patients and handed me laxatives.

Was this what it was like for my daughter the time I heard “Mummy, window down,” when instead she was asking “Mummy, what’s that sound?’ Or the time I heard “Where’s my kangaroo?” when instead she was asking “Where’s my ballet shoes?”—except that she didn’t later laugh about it.

Another time I ran out to our backyard upon hearing my son yelling, “Stop, you’re poisoning it,” only to discover he was bossily telling his sister, “Don’t, you’re closing it.”

My racing heart relaxed until he tried unsuccessfully to elaborate.

I hope during their dreams they speak effortlessly, yet I wonder—do they mumble through falling out teeth and scream silently when chased by monsters?

Sometimes I can flawlessly interpret my kids’ jumbled nuances, because after all I am their mother. I understand them slightly better than their father—possibly because rowdy bedtime wrestling doesn’t require precise dialogue.

Perhaps I pre-empt what my children want or think but I hope I don’t presume. Perhaps their words are superfluous. Perhaps I’m simply used to their dyspraxic speech patterns.

Hopefully they take comfort knowing we share a secret language.

They sing their favorite nursery rhymes—Baa Baa Black Sheep, and Twinkle twinkle Little Star in verses only we understand. And when I puzzle at my daughter’s spoken bedtime song requests, she merrily starts singing the opening line to help me at least recognize the tune.

It reminds me of a childhood game I used to play with my brother where one would hum a top 40 hit until the other guessed the title and artist.

Today my children and I enjoy a game where we pick a random topic and take turns improv-style, making up musical lyrics.

My children feel unshackled when singing—a chance at true expression without concern for correction, clarification or chagrin. They are not speaking to be heard by others, but singing to free their conflicted selves.

Of course, I know my children’s challenges could be far worse. At least words are within reach, unlike a deaf child who will never hear the majestic crash of the ocean, or a blind child who’ll never see baby turtles emerging from their nests in the sand.

The prognosis is that Serentai and Indica’s speech should improve over time with dedicated speech therapy, although lingering dyspraxic features and problems with literacy commonly prevail.

Admittedly we are seeing incremental advances. Our son can now not only pronounce the word milk, but also tell us just how much he dislikes it.

Our daughter is slowly unravelling her crumpled yellow wings.

Last night she softly sang Morningtown Ride from beginning to end, with only a hint of inhibition.

There’s still a possibility that one day our children will be great orators and if that never happens, that’s quite okay.

 

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Assistant Ed: Kathryn Ashworth/Ed: Bryonie Wise

About Leah Boonthanom

Leah Boonthanom is an Australian writer who covers a diverse range of genres. Mum to two young kids, she is currently focused on writing memoirs, many of which explore what motherhood and being adopted mean to her. Leah works for Australian Doctors International and has previously worked for the international charity ActionAid in Asia and National Geographic magazine in Washington DC. Despite having a MA in Non-Fiction Writing from Johns Hopkins University, she’s recently started dabbling in writing children’s fiction. In her spare time, Leah loves practicing yoga.

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29 Responses to “When Words Will Not Come: A Journey of Verbal Dyspraxia. ~ Leah Boonthanom”

  1. Lili says:

    Amazing story and amazing parents!! I had no idea this existed and Leah explains it with such heart and soul! Best wishes to this lovely family! Lili

  2. Henry says:

    Absolutely amazing and incredibly expressed with so much love and passion only a mother can. God bless u both in this journey.

  3. Sheila says:

    HI Loving Mother!

    I'd encourage you to google the Let's Start Talking program by Dr. Megan Hodge and/or google and read an article called, 'Managing Suspected Childhood Apraxiaof Speech: A Care Pathway
    ASHA November 20, 2010 Philadelphia'.

    I wish you and your children the very, very best!
    An SLP from Canada

  4. Collette says:

    Your story made me cry, knowing i'm not alone helps. My middle son struggles everyday to get his needs across and when others (other then his family) talk with him, all they do is ask "what" or "huh" and look at me with sympathy, He understands what is being said so when people ask whats wrong with him or say nasty things he knows what they just said about him and he asks why! He is to start prep next year and we have been told he will have support i'm still so worried about how the other children are going to treat him. my youngest son speaks better then my middle but has the same issue. He is on the waiting list to see a speech therapist as of next year. it breaks my heart when I have to ask my 2 youngest sons to repeat what they said as they get upset and my middle son says sorry to me as he knows I cant understand. I try to tell him it's not his fault, but it breaks my heart everyday. Thank you for putting this out there.

    • Leah says:

      Your comment made me cry – especially hearing that your son apologises for not being able to make his words intelligible to you. It's such a burden for our precious little ones. I'm sure you are a wonderful support to them (that's what writing my story made me realise about myself, once I put it all on paper). Keep going and I hope you get access to a speech therapist soon. You need some support, it's too difficult to travel this journey alone.

  5. Amelia says:

    As a Speech Pathologist, it's interesting to hear the heart felt perspective of a parent. Dyspraxia isn't an easy road that's for sure – keep on keeping on

  6. vicky says:

    Thank you for your beautiful, intelligent depiction of life with verbal dyspraxia. My son was diagnosed with dyspraxia when he was young and required many years of speech therapy. Now he is 15, his speech is clear but still effortful when he is tired or has a lot to say. I was touched by all the fantastic professionals who helped us along or journey over the years. In fact, I was so impassioned that I decided that I wanted to help other families who were exactly like us. So I became a speech pathologist myself and I love it. I spend every day helping children and their families communicate. It is the best job in the world.

    • Leah says:

      Hi Vicky, yes we've worked with some amazing speech professionals over the years (and over the years to come too I expect). Once my son starts school in February 2014 we will no longer be able to use the speech therapist we currently use. So a new transition is ahead! Good on you for helping so many other kids and their families.

  7. Helen says:

    Thank you for sharing your journey. I am too on the same journey with my 5 yr old son…after finding next to no help in Australian it went to the CASANA conference in Boston Last year and it was the best thing I could have done I implemented the information given when I returned to both slp and ot and we saw tremendous progress.. It is a long road and now we have school next year I'm waiting for more little issues to shine through..A friend and I have started a Brisbane support group so other parents don't feel so alone..

  8. cjp says:

    Leah, thank you for the article and sharing your sgtory. It made me cry and laugh. I sometimes feel guilty for my son’s apraxia. Perhaps I didn’t take my vitamins, exercised too much or too little. All sorts of thoughts. Is there any conclusive evidence about the causes of CAS.

    • cjp says:

      Meant to say story. Sorry.

      • Leah says:

        Hi thanks for reading my story. There is no conclusive evidence about the cause of apraxia/dyspraxia. We need to stop blaming ourselves (as we certainly don't want our kids blaming themselves either!) A fantastic resource (albeit quite clinical) is the American Speech Language Hearing Association (ASHA's) Ad Hoc Committee on Apraxia of Speech in Children, Technical Report http://www.asha.org/policy/TR2007-00278.htm. Have a look as they wonder about the causes too.

  9. Kylie Capobianco says:

    Wow, my son in 6 with Verbal Dyspraxia – your journey is so simular although I thank my lucky stars that my middle daughters speech is ok, but again I wait with baited breath while my youngest daughters languauge evolves…. Thankyou for your beautifully written honest account of your story, if only I could write my own journey so eliquently. I read with tears in my eyes, as genearally things feel like they are getting better, although there are moments in every day when he so struggles to tell me something that he is excited or curious about and I can not understand….

    • Leah says:

      I so feel your pain when they struggle to tell us something they are excited or curious about. it's so bittersweet, isn't it? thanks for reading my story and good luck with your youngest daughter. at least you know what to look out for, and what to do if it turns out she has dyspraxia (apraxia) too. let's see how my son goes at school next year. i'm excited for him, last year i was filled with dread and i'm so glad we waited an extra year.

  10. Amber says:

    Thankyou for sharing your story. My son is 3 and has CAS. It is interesting to hear your perspective when you are a little further down the road than us. We too speak our own language in our home, 'uga' means drink, 'dagungun' means motorbike. My CAS child is the youngest of 4 children, thankfully none of my other children have any speech issues. It is a very long road!

  11. Belinda P says:

    Great article Leah, I had tears in my eyes reading it. I understood it completely and felt so many of those feelings and experiences. My youngest son who is 3 1/2 has CAS and I'm constantly on a roller coaster of emotions between sad, encouraged, optimistic, happy for small progress, really sad for what lies ahead (I worry about kinder & school), just get on with it , positive, progress is so slow etc. He's such an otherwise happy little boy and sometimes I just look at his sweet little face and just burst into tears because I think it's not fair :-( Thank goodness for the Internet and being able to reach out to other parents going through the same thing. x

  12. Irina says:

    Leah you write so beautifully and passionately about something that is so close to your heart. In the few times i have met your children, they are always so full of life and wonder, that one would not be aware of their struggle to convey dialogue to you.
    You need to feel strong and positive about yourself because you are achieving so much with them and it reflects in the way Serentai and Indica are progressing. Singing and dancing is so enriching and comforting to young children allowing them to express what perhaps they cannot say but feel inside.

  13. Cortney says:

    Leah, Thank you for writing such a beautiful and important article. I too am like you, a speech mom with a daughter struggling with Apraxia of Speech. My daughter is 3 and has com so far, but still has such a long journey in front of her. CAS has made her a strong, determined child, but has also made it very hard for her to be actively social with other kids. She withdraws when she is around kids her own age and it breaks my heart when she comes home from school and tells me her best friend is her teacher. Keep up your hard work an love for your babies and thank you for sharing your story. The more people to talk about CAS, the more awareness and support we can bring to the world.

  14. Michelle S. says:

    Leah…There is so much in your story I can relate to. We have two daughters that have been diagnosed with Apraxia and it has been a long road for our family. We are so grateful to live in a province in Canada that supports families of children with disabilities. Our oldest daughter was diagnosed with speech/comprehension problems at 3 and started an intense 5 day specialized preschool program. She has had in class SLP & OT support with the results being nothing short of a amazing. At nearly 6 she still has a few issues which we now believe are from a series of seizures she when she was 1.5 but she is definitely better equipped to deal with being mainstreamed into our local school system next year. Our youngest was diagnosed first with speech delay at 2 but it was then changed to Apraxia as well. She had the benefit of us learning from her sister so we had her enrolled a year earlier in the same preschool as her sister. This is her 2nd year at the preschool and we have already been told that with her progress she will most likely not receive funding so she will be mainstreamed as well next year. Our journey has been long and sometimes very lonely (as it is hard for friends to truly understand what we are going through when their children do not have speech issues). In the past I have also spent many hours wondering what it was I did wrong possibly while I was pregnant and was I the cause of these problems but have chosen to put my efforts into helping them get the support they will need. while I don't wish Apraxia on anyone it is comforting to know other parents are walking our road. God Bless you on your journey !

  15. Heidi says:

    Hi Leah! A wonderful article that follows on from your manly daily article, that speaks perfectly what we experience in our household everyday. My 5 yr old daughter was diagnosed with verbal dyspraxia at 2 yrs of age. It was bittersweet as the journey then led us 6 mths later to be given the further diagnosis of 18p- Syndrome of which verbal dyspraxia is just one of the resulting issues from a loss of thousands of genes. I suppose at least we know what causes her verbal dyspraxia.

  16. Heidi says:

    We were lucky to get straight into government and private speech therapy and can remember those first few hours with the private speechie, sitting in front of our mirrored cupboard doors in our bedroom, with nutella on our lips, trying to encourage her to feel how she could move her tongue. Her first word at 2 1/2 was mum, and even the speechie was in tears. Fast forward to today and we have moments of clarity and moments of meltdowns as I fail to understand her. It has taken us 2 yrs to teach her "c/k" and still it is not consistent and even the speechie wonders what is going on in that pretty head of hers. But she is so excited about school next year that nothing will stop her, even at 6am in the morning when we are struggling to open our eyes, her fog horn sounding chatter is sometimes bulldozed by us. Good luck in your journey!

  17. Jack says:

    Thank you for sharing your story. I was diagnosed at the age of three with profound verbal dyspraxia. Growing up with verbal dyspraxia was really hard for me because I didn't had a functioning way of communicating with the people around me, it was frustrating and upsetting because I known what I wanted to say, but I just couldn't say it..

    Speech therapy has been such a big part of my life and I wouldn't have been able to communicate as effectively as I do now without having it. Over the years I have formed such good bonds with my speech therapists and I am so grateful for that. I admire them so much and that is why I want to have a career that will let me help people.

    I am now 22 and I am still receiving speech therapy, I am still working on my speech and my communication. It has been a hard and long journey, but I wouldn't change it

  18. Jack says:

    Thank you for sharing. I was diagnosed at the age of three with profound verbal dyspraxia and my speech is severely affected by it. Growing up with verbal dyspraxia was really hard for me because I didn't had a functioning way of communicating with the people around me, it was frustrating and upsetting because I knew what wanted to say, but I just couldn't say it.

    I have been receiving speech pathology on and off since I was 3. Speech therapy has been such a big part of my life and I wouldn't have been able to communicate as effectively as I do now without having it. Over the years I have formed such good bonds with my speech therapists and I am so grateful for that. I admire them so much and that is why I want to be able to one day help other people.

    I am now 22 and I am still receiving speech therapy, I am still working on my speech and my communication. My journey with verbal dyspraxia has been hard and long, but I wouldn't change it.

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