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October 11, 2013

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

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

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