My first ever teacher was called Mrs Green. Or as I secretly called her, “Grisses Mean”, and by that I meant that I viewed her as a perambulating vinegar cruet*, a shameless child-hater and a nasty bigot; I just didn’t have the words for it when I was five.

 

I cried on my first days at school. I was scared and not happy about being separated from my mum. I’d lived a life full of change and unusual events up until then and I guess I wasn’t the most secure of five-year-olds. I’d lived in Singapore, Poland and Egypt and it was in Egypt that we felt the threat of war and had a rabies scare. Our pet dog got the virus and attacked us all. We had to have hideously painful shots in our stomachs every day for weeks. The memories are still vivid.

So being dropped off at my first school on that September morning in 1976 wasn’t my cup of tea at all. Especially since I was delivered into the hands of Grisses Mean. I played truant that year to cope with the horridness.

“Stop crying, or I’ll give you something to cry about!” were among the first words she hissed at me. I didn’t really understand the saying back then, but there was no misinterpreting the threat.

 

My school was also attended by local Romany families, whose encampment was nearby. Christopher was a young boy from the encampment and given his unkempt appearance, probably didn’t have access to the laundry and bathing facilities the rest of us took for granted. But he was nice enough and the children treated him no differently. On the other hand, Grisses Mean and the other Reception teacher, Miss Humble (no, she wasn’t), were awful to him. When Miss Humble announced her engagement, we all rushed to congratulate her, Christopher included. He, like many of the other children, gave her a big hug. Grisses Mean turned to her and said, “You’ve probably caught something nasty now!” and they both laughed. You can imagine the effect it had on Christopher.

I’ve had lots of great teachers since then (and some terrible ones), but I paint the picture of Grisses Mean to highlight one particular point. You see, I was one of the lucky children that just took to reading and writing like a duck to water. I was doing both proficiently before I even entered the World of Mean. She taught me NOTHING in terms of literacy, and the thought of her somehow claiming that she did makes my skin crawl.

I’m not the only child who was literate before school entry. Quite a large number of children achieve this easily and many more achieve it with minimal guidance. This is why weaker, lower quality methods of literacy instruction still exist. For some, it doesn’t matter how badly you teach, they’re going to learn anyway. How good does that make an inefficient teacher look?

 

That’s why, if you show me a bunch of beautiful writing samples, you fail to impress me. Those samples prove nothing.

In fact, I think it’s somewhat creepy that any teacher would consider reveling in phony glory over achievements that mostly had nothing to do with them.

For every one of those samples, I can show you samples of children in all grades, all the way to adulthood, who slipped through the net of poor instruction and ended up illiterate.

Show me instead, your outliers: the ones whose odds are already stacked against them, the Christophers of this world, the ones from backgrounds that don’t support literacy development or the ones who got first prize in the dyslexia lottery (not a great prize, I can tell you).

Six year old boy after one year of ‘balanced literacy’, 3-cueing and analytic phonics.

The same boy after one year of systematic, synthetic phonics and structured literacy.

 

 

 

 

 

 

 

If you want to make an impression, show me the samples of those who struggle and the difference you’re making to them over time. Show me them two, three, four years up the track. Show me how you’ve passed them on to their next teacher with a meaningful learning plan and the intention of checking back on them to make sure they’re progressing. That’s something that takes expertise and excellent tools. That’s impressive.

If you can make a difference in their lives, you have my attention. If you understand, campaign for and demand a better deal for them and the thousands all over the world like them, you have my respect. A better deal means higher quality teacher training, phonics screening and decodable reading material that matches the sequence of your systematic synthetic phonics teaching. It means understanding the Simple View of Reading and the Big Five of literacy.

As for those who were going to read and write anyway, try to remember this: it’s not because of you and it’s not about you. Put your samples away. I’m not interested, and neither is anyone else in the field who has the slightest understanding of how literacy acquisition works.

*I stole this insult from an excerpt of a 1922 will.

Amanda BugieraFirst in the series of parent/practitioner perspectives, Walking the Line is a useful guide to approaching schools to advocate for your children. Amanda is a specialist dyslexia tutor here at Lifelong Literacy. She has three dyslexic children, all at primary school, and has successfully navigated a path through the dyslexia minefield for all of them.

Amanda Bugiera: advocate extraordinaire

Walking the line between being one of ‘those’ parents and being an effective and assertive advocate is a tricky part of the journey for any parent of a child with additional needs. We have all been there and had to mask our emotional fury, disappointment, sorrow or resignation to the futility of it all, while attempting to bargain for the best deal for our child.

There is inevitable inequity and power dynamics at any school meeting or negotiation.

Firstly, the match is on home ground for school staff. This is their arena and at the end of the day they call the shots. Even the information about what goes on within the classroom is provided to you at their discretion. It may leave you feeling like the outsider despite the fact that this is your child.

Secondly, you may feel intimidated when the teacher, Vice Principal/head of special education and other members of the school team outnumber you. They may tag team in response to your concerns. They may fail to respond, and wait for you to push the issue. I like to call this phenomenon ‘the path of least resistance’. If they ignore the issue and it goes away, in their minds it did not require a response, as the problem resolved itself.

After all ‘your child is one of many students!’ I’m sure you have been fed that pointed reminder before. This does not mean that your child’s potential and rights are any less important than those who aren’t struggling. Polite non-acceptance of this implication goes a long way.

At the end of the school year, the school also holds power in the teacher lottery. Revealing next year’s selection at the last minute leaves parents with little time to dispute any class allocation.

Here are some key skills required to gain the most out of any school interaction:

ACT PROMPTLY

If you are concerned about class allocation, an incident at school, accommodations not being implemented act immediately (though after you have slept on it can help to provide emotional distance).

 

LET THE RESEARCH DO THE TALKING

Go in armed with information; research, studies, articles. Prepare, prepare and prepare again! What is it you are asking for? What evidence do you have to that supports your request?

 

USE YOUR FORMIDABLE ILP FOLDER

You are the expert and almanac of information regarding your child!

For in-person meetings, take your ILP folder and any resources you use from home to share with the school (you never know what you are going to need, and if nothing else it proves your dedication and organisation and willingness to collaborate).

 

ENSURE CONTINUITY

When emailing, refer to reports and recommendations previously provided by you to the school regarding your child.

 

INCREASE YOUR NUMBERS

Take an advocate with you. Equal out the numbers. This applies to meetings but also emails. CC your literacy specialist/tutor or partner into your emails.

 

STAY CALM

You are going to get nowhere fast if you do not put your perspective forward calmly. Being calm helps you provide your best argument. Be calm but assertive. This takes practice. You may cry, but don’t let it disarm you. If nothing else it’s hard to be attacked when you are temporarily defenceless.

 

FORM A TEAM

Be realistic, find common ground and acknowledge the reality of their position: ‘I understand it may be hard to implement initially, and my child is one of many students, but my child needs this to allow him/her equitable access to the curriculum. I want to form a team for my child that collaborates to provide the best education and outcome for him/her. I am sure we can all agree on that being imperative.’

 

IF AT FIRST YOU DON’T SUCCEED TRY, TRY AGAIN.

Rome was not built in a day. Start small, ask for something they are unlikely to refuse and build from there. Small and frequent steps will propel you towards the end goal.

 

END ON A POSITIVE NOTE

After all you catch more flies with honey. If you are pleasant to deal with the school are more likely to involve and approach you in the future.

Amanda has a specialist advocate role at Lifelong Literacy and is now taking bookings from families to help with the following tasks: Organising ILP/IEP/ILEP folders Helping to construct achievable, measurable goals for children, parents and schools to work on Attending meetings with schools to assist with gaining the best outcome Please contact us for an initial consultation with Amanda and to enquire about her hourly rate.

 

The word ‘demand’ can certainly raise some emotions in people. I have been using it liberally lately in my writing and presentations and I’m finding that there is a little bit of knee-jerk, if not deliberate, misinterpretation of the term.

Let’s start with my quote, recently uploaded to Dyslexia Support Australia and Dyslexia Victoria Support on Facebook. It comes from my next book, Reading for Life:

“If you want to make a difference in your school, demand decodable readers and campaign to have levelled reading systems and predictable readers eradicated.”

If you wanted, you could choose the following OED definition:

“Demand

ask authoritatively or brusquely:

[with direct speech]: ‘Where is she?’ he demanded

[with clause]:the police demanded he give them names.’

Contrast that with the definition that actually fits the context, and was, of course, the one intended, as anyone who doesn’t want to set up a straw man can see:

“Demand

[with object] insist on having: an outraged public demanded retribution”

So, when I say ‘demand’, I don’t mean march into the principal’s office, brandishing swords and flaming pitchforks. I don’t mean be unreasonable, brash, rude, arrogant, selfish or aggressive. I simply mean insist on having better resources, better quality teacher training and a better deal for everyone.

Demand has a direct effect on supply. If you do not make your demand known, then suppliers of low quality resources are free to keep supplying them.

Because what is the alternative? A quiet request? A suggestion? These too have their place, but we have huge ideological, economic  and political barriers to overcome if we are to achieve reading success for all. Unless we as parents and educators take a forceful stance, we will have little or no impact on the quality of supply. It requires demand. According to the OED:

“[mass noun] the desire of consumers, clients, employers, etc. for a particular commodity, service, or other item: a recent slump in demand”

You can demand a better deal by doing one or all of the following things:

Sign the petition for decodable readers in Victorian schools or start one in your state/country. Support and advance non-profit organisations like LDA, SPELD and Code Read Dyslexia Network. Offer research-supported strategies on your child’s Individual Learning/Education Plan as an alternative to guessing, multi-cueing and other balanced literacy methods. Team up with other parents to increase the power of your voice (see the rope below).

 

 

 

 

 

 

 

 

 

 

 

 

And don’t be afraid of the word. Demand and diplomacy are not antonyms.

“In real science, one is eventually influenced by the evidence.” Keith Stanovich (2000)

 

In response to some absurd notions floating about on social media this month in the wake of the #PhonicsDebate, I have published this article. It is actually an expunged chapter from my next book, Reading for Life: How to demand and supply high quality literacy instruction for all.

I never really thought I’d have the problem of having to cut whole chapters from a book, but there is so much to say about the subject that I found myself going 15,000 words above my agreed-upon limit. It also serves to answer my recent Twitter detractors one at a time, most of whom are muted due to being in one or all of the categories below:

Shrill (but still wrong) Illogical Abusive

I’d also like to thank whoever it was who published my teacher training workshop prices from my website on Twitter. This publicly available information does need to be disseminated, and as a result, enquiries and bookings have increased this week.

The flat Earth

Once upon a time, it was widely believed that the Earth was flat. Many ancient cultures portrayed the world as being a flat surface and this belief survived until Pythagoras and the like started proving otherwise in the 6thcentury BC.

Through the cumulative efforts of cosmologists, philosophers, mathematicians and astronomers, to name but a few, a vast body of knowledge about the shape of the Earth has developed. The competing view has taken something of a back seat due to the sheer weight of evidence against it.

There is however, even in this day and age, a group of people who cling dogmatically to the flat Earth ideal and they are called, surprisingly enough, Flat Earthers. Many are influenced by religious literalism and strong suspicion of the government, and most are mocked or ignored by the rest of the world.

If only the science of reading had similar clear divisions between itself and what has come to be a pseudoscience of reading. Reading science doesn’t lack a weight of evidence, and yet false theories continue to exist.

Flat Earthers do very little harm, although indoctrinating children is somewhat abusive, especially if that indoctrination causes them to reject science. Pseudoscience in reading, however, has racked up an extensive list of casualties, not least an incarcerated/disenfranchised underclass in every English speaking country.

A brief history of reading science

Back in the old days, when functional brain scans and the internet didn’t exist, three major theories about how children learn to read emerged. These were known broadly as phonics, whole language and whole word.

Phonics can be regarded as a bottom-up approach, starting with the smallest units, i.e. letters and sounds, and building up towards words, phrases and sentences. Whole language and whole word are top-down approaches, in that they start with larger units such as meaning and whole words, and work their way down to the smaller building blocks of language incidentally, if at all.

The three major theories of reading

 

Scientists in numerous fields have spent the best part of the last century testing the theories. Some started off supporting one theory, and found that they had to change their mind about their notions of learning to read.

Keith Stanovich talks about this in his highly acclaimed book Progress in Understanding Reading: Scientific Foundations and New Frontiers. He says:

“We did start out with a theoretical bias, one consistent with the top-down view. But in real science one is eventually influenced by the evidence, regardless of one’s initial bias, and the consistency of our findings finally led us away from the top-down view.”

This kind of hypothesis-testing is how we concluded that he brain was, in fact, not the organ we pushed blood around our bodies with. It’s how we found out that the heart wasn’t the seat of thought. It’s how we came up with useful ideas that stuck, like hand-washing before and after performing surgery.

The act of testing is called research. The result of testing is called evidence. These are very important terms to understand when selecting teaching methods. The words research and evidence are thrown around a little too much in the education arena without being properly defined.

Testing and re-testing, over time, by different scientists and coming up with predictable results produces a theory. When various scientists agree on a theory, we have what is called scientific consensus. When scientists from various fields come to the similar conclusions, this is known as convergence. Psychologists, linguists, educators and speech-language professionals have done so on the subject of reading.

A century of testing and evaluating evidence has resulted in a consensus and a convergent understanding of the processes involved in achieving skilled reading and writing. Here is the conclusion:

Systematic synthetic phonics is currently the most effective method of initial reading instruction. Systematic synthetic phonics is a necessary step in the process of literacy acquisition, but is not sufficient on its own to guarantee literacy for all. Timely and appropriate instruction in phonological awareness, fluency, vocabulary and comprehension is also necessary to ensure literacy for the largest possible population. Reading is not a psycholinguistic guessing game. Learning an alphabetic language by memorising whole words in the absence of blending and segmenting their parts is ultimately impossible for most people.

The problem is, claims that children can learn to read using context and whole words, like the claim that the Earth is flat, are not so absurd that anyone can dismiss them out of hand. There are enough instances of children learning to read in spite of poor instruction and there are enough examples of the Earth being seemingly flat to give these theories some weight.

Why are whole language and whole word methods like the flat Earth?

Whole language and whole word are very seductive theories, and still enjoy enormous popularity worldwide. They tie in with the trendy, but ultimately empty idea that children’s creativity, personal interests and individual sparkle should be at the forefront of all teaching.

Now I’m all for individualistic and sparkly children, but nothing loses a sparkle quicker than a child entering their third year of schooling still unable to read/write/count. No one enters my practice to get help with their creativity, collaborative abilities, critical thinking or play-based skills. They want to learn to read, write and count as a result of not being well taught at school.

The casualties of top-down ideas are everywhere. The remnants of whole language are deeply and firmly entrenched in the collective educational psyche.

Words are not independent objects to be learned by sight like people’s faces or the flags of the world’s nations. They contain a limited set of parts that can be combined and recombined to form many and varied wholes.

Methods which ignore this truth have been shown repeatedly to be less effective, but, like the flat Earth theory, they don’t seem to go away.

Maybe it has something to do with the fact that when whole language and whole word started to gain popularity, like the Flat Earthers, their proponents didn’t have the research to verify their claims, but either did anyone else.

And so the three camps became ever more distinct from one another and rivalry, bitterness and vitriol ensued. But there’s one very important point that often gets missed, and that is that whole language and whole word proponents failed to advance their theories. Most of their time was spent furiously defending their position or trying to merge with the other two.

Not so the majority of phonics proponents. Theorists, researchers and practitioners in this field continued to refine and build upon phonics. They realised that phonics is necessary but not sufficient for fluent reading with comprehension.

The most effective practitioners use appropriate and timely instruction in the keys to literacy. Systematic synthetic phonics should feature most heavily within the framework of those keys, especially in the early years. This is widely acknowledged by authors, publishers and teachers who understand the evidence base. But more has to be done to get children reading and writing competently.

One of the greatest problems faced by people who understand this is that there is no standard name for this set of principles. They are denigrated by whole language and whole word proponents, despite vindication by science. Their work is referred to only as ‘phonics’. I myself have even been, hilariously, accused of being a ‘phonicator’ or ‘phombie’ for supporting and advancing the notion that systematic synthetic phonics is important.

Name-calling and misrepresentation of this set of principles implies that those who support systematic synthetic phonics are basing their stance on philosophy. Therefore, if it’s philosophical, the competing view must be equally valid. Research evidence is ignored.

A further problem emerges because reading scientists are just that: scientists. They tend not to use their energy to create user-friendly explanations of complex processes. They are generally busy conducting and publishing actual research. So we have a vacuum, and into that vacuum creeps the philosophical brigade, whose time isn’t spent in the lab, and so they are free to spread disinformation in order to cling to comforting falsehoods.

A grudging recognition of the importance of phonics has started to seep into some corners of education and a new beast has arrived on the scene called balanced literacy. It is touted as a mixture of low-pace, analytic phonics, whole language and whole word; the worst of all possible worlds, in fact.

Top-down proponents say that children should be taught to read using the following strategies:

Being read to Guessing at unknown words Using context to guess unknown words Using picture cues to guess unknown words Learning ‘sight words’ by memorizing their shape or visual features Looking at the first letter of a word and moving to the next word (this is the balanced phonics part)

These methods fail to serve a large number of children and have indeed been shown in laboratory conditions to be the strategies employed by poor readers who have not yet mastered the alphabetic code.

Yet balanced literacy and whole word proponents maintain an illogical attachment to these methods instead of advancing the field by admitting they were wrong. To admit that would be painful and challenging. It would require the author/teacher to face that they have made a mistake that has likely done a disservice to many children.

Top-down methods sound plausible and are often strongly argued. Politicians, education bureaucrats and the general public do not, and often cannot, understand the data put forth in the research. Therefore they are swayed by the most emotive, strongest argument.

Unfortunately, whole language, and to a lesser degree, whole word proponents are far more advanced and well organized than Flat Earthers. We would laugh them out of the geography lecture theatre if they tried to put their views forward in a tertiary setting. And yet I don’t hear anyone laughing at teacher training colleges when the psycholinguistic guessing games or sight word lists spring up.

If you are a teacher or a teacher in training, your acceptance of flat Earth reading theory could make the difference between literacy and illiteracy for countless children. This open letter to student teachers might provide some insight as to how to demand better training.

References

Stanovich, K.E. (2000). Progress in Understanding Reading: Scientific foundations and new frontiers. New York: Guilford.

Intensive care: the new normal

Mrs Chips in happier times

There have been times, when at my most rational and pragmatic, I’ve contemplated my life’s end and its implications for my eldest daughter. During these times, I confess I’ve hoped that her life didn’t extend much further than mine.

Chloe (nicknamed Mrs Chips) is profoundly dependent on others for all her care needs. She does not walk (without assistance) or talk, she cannot chew food and wears nappies. I constantly wonder what her life would be like without me and my conclusion is never a positive one. This extremely vulnerable person is emotionally attached to me, just as my other two daughters are. But the difference is that Chloe is not just reliant on my emotional support. She also survives on my interpretation of her signals (which can be learnt, to an extent), and my understanding of her history and past experiences (which cannot). I’m her external hard drive, if you like.

The only other person who carried this context was her father, and he has been dead nearly a decade now.

Her life now hangs in the balance as she lies in intensive care, suffering the culmination of a long decline in the form of an acute illness. The pragmatist in me recognises the positive side of this. But my inner pragmatist is no match for my breaking heart.

She started ailing about three years ago. Small things, like starting to receive hand-me-downs from her two younger sisters, crying in pain for no discernible reason, being less keen to get up on her feet, began to indicate something was not right.

I took her to her paediatrician who confirmed weight gain of a mere two kilos in three years. And thus began the long and winding road of testing.

Severe iron-deficient anaemia was the first diagnosis, and on that basis she was admitted to hospital. I was glad we’d found something, and the small voice in my head that would sometimes say, “She’s dying”, was temporarily silenced.

Cut to several months later and I’m suddenly asked into a small room by the consultant paediatrician for the ‘do not resuscitate’ chat. Hospitals are very sensitive in their dealings with parents, and it was emphasized that this was ‘just a chat’ and no indication of her future, per se.

We have, however, been descending through lower and lower circles of hospital hell ever since.

Just for clarification: the hospital Chloe is in is absolutely wonderful in every way. Apart from the fact that Monash Children’s Hospital is brand new, with state of the art everything, the staff, from top to bottom, are kind, gracious, intelligent and professional. We are unbelievably lucky to be there and mere words cannot begin to express our gratitude.

Circles of hell nonetheless. The first circle is admission itself. After a rather thrilling ride in an ambulance when Chloe’s temperature and pain spiked in reaction to an abscess on her back, we spent five hours in the emergency department. This isn’t bad at all, by modern standards, and we were well looked after. But it’s gruelling and uncomfortable and we were so glad to get onto the ward. When I say the ward, this place gave us our own room, with a bed for me and an ensuite bathroom. This is the public health system in Australia. We are very, very lucky.

So began the first new normal: the rounds, the food, the new routine. I tried to make her smile, make her laugh, let her do mischief like throwing the vomit hat to the floor. I stayed there constantly to make sure she knew she was not alone and that her needs were met. The new normal became being wistful about the plants I’d received for my birthday and knowing they were probably going to wilt. The new normal was worrying that the dog was going to get fat without his daily walks, that the other two girls were having some pleasant times in their Easter holiday. The big question was, “When are we going to get back home?”

We descended into the second circle when the antibiotics didn’t yield the results we were hoping for. Surgery became the next option as the infection spread through the muscles and tissue of her back. The new normal became admission to the intensive care unit and the suspension of all work and play. I knew she didn’t feel like smiling, but she joined in the “let’s pull the scarf off Mum’s head” game like a champ. The big question was, “When are we going to get back on the ward?”

The first time I heard the word “dying” in a sentence containing my daughter’s name, I went into shock. It was a Sunday morning and I’d gone home from ICU to catch up on much-needed sleep and family time. She had had another operation on the previous day to try and locate and clean the multiple infection sites in her back. The consultant was talking me through the troubled night she’d had and his grim words made my heart thump and my body shake uncontrollably. I cried with uncharacteristic gusto. This was more than a DNR chat now. I was being asked about her quality of life and the voice in my head from so long ago was being echoed in the words of the experts.

The new normal became daily meetings with medical teams (Infectious Diseases, Plastic Surgery, Adolescent, ICU), with her slipping in and out of consciousness, barely recognizing me. The big question was, “When do you think she might be able to come off the breathing tube?”

The next circle was the friendly contact from the palliative care team, “just to touch base”. We have delineated certain conditions under which resuscitation will not proceed. She waxes and wanes like the moon. We have settled on active treatment as long as she remains out of pain and distress. The new normal is constant scrutiny of her vital signs, making sure that everyone has said goodbye, a slight flutter of joy when she moves her arm. The big question is now, “How much is too much?”

Her sisters, 12 and 14, need constant reassurance, but that’s something no one can give. I use the analogy of a tight-rope walker. She’s treading carefully on a fraying rope. The medical staff are doing everything in their power to make that rope stronger, but she could fall off at any moment. It will be a long, long time before she’s on solid ground again.

People have been kind, sending thoughts and sometimes prayers. I could be described as a secular humanist, so I find the idea of prayer bizarre, but people need to feel they are contributing, so I don’t question their beliefs. That’s also the new normal.

The big question now is, “Did she make it through the night? Is she out of pain?”

Hours tick by, life goes on, deadlines loom. I’ve promised myself I’ll finish my next book on time, no matter what happens. It’s easy to see the hardship in the two hour round-trip to hospital, the unpaid bills, the undone housework, the other children, the animals and the plants. What’s harder to perceive from the outside is the enormous, exhausting effort of keeping total despair at bay. But I can if you can, Mrs Chips.

Which brings me back to my thoughts of what happens after my demise. I’ve been given the choice, at any time, to say, “Cease treatment”. Problems of her future could disappear. The new question has become, “When do I let her go?”

My only answer is, “When she herself decides.” I have opted for active treatment because I’m aware of the immeasurable determination my girl possesses. Though she can’t speak, my interpretation of her struggle is that she will make her own decision about when she’s had enough. Several times she’s gone very low, and several times she’s rallied. I can’t kick the legs out from under her now and I’m surprised I’m being handed that power.

All her problems would disappear and the question of her life after my death would be moot. But if I were standing in front of two buttons that said “live” and “die”, I couldn’t imagine a scenario where I’d press the latter. Perhaps that’s the next circle. I hope not.

UPDATE:

Our precious and beautiful Chloe died peacefully in her sleep last night (12/4/18). Thank you everyone for your kind words and support.

Why an over-focus on “blends” could be slowing reading and spelling progress.

Working 1:1 with primary school children allows me to monitor teaching trends in my local area. This micro-sample is often an indicator of general tendencies in teaching on a larger scale and I try to confirm, as much as possible, the extent of what I’ve observed.

In the early years of this millennium I started noticing my students incorporating the letter y into their lists of known vowels. I also saw a rise in simplistic but no less positive sayings like ‘every word needs a vowel’ and ‘every sentence needs a verb’.

These are pleasing trends and give me much hope that linguistics is making some headway in schools. On the downside, however, there is quite a bit of false information and teaching trends which negatively impact students. Because I work with children who struggle as a result of these trends, I am especially aware of the damage they do. The children who come to me are like educational bellwethers, since they are the most affected both by good, and more frequently, bad teaching.

Recently I’ve been noticing an upswing in what I call unwelcome intruders and missing persons. To clarify, unwelcome intruders are sounds a student makes when reading a word, even though the grapheme for that sound is absent, e.g. reading ‘blend’ for bend. Missing persons is the opposite, when students omit a grapheme in spelling, even though they say it, e.g. ‘bend’ for blend.

I work with a population whose phonological awareness (PA) is typically low, so these two phenomena are relatively common, but I’m seeing it more frequently and in a wider group containing children whose PA scores are average or above.

I have a suspicion about the origins of this change. Of course, it’s a theory at this stage, but I’d like to get to the bottom of it nonetheless. It concerns the teaching of blends.

A blend can be defined as two or more adjacent consonant (C) graphemes before or after a vowel (V) in a single syllable. A blend can be represented thus:

C C V C  for example:

S T O P

C V C C for example:

G I F T

C C V C C for example:

S T A M P

The phonemes in a simple syllable are relatively easy to segment, perceive and represent. A consonant-vowel-consonant (CVC) pattern, like bat or mug presents no significant difficulty in reading or spelling, especially if the phonemes can be represented with one letter.

But as soon as a little bit of complexity is added, all hell breaks loose.

Take a CCVC pattern for instance, e.g. stop, fled, or trip. Much greater effort and skill is required to perceive and represent that pattern.

One of the reasons for this is that sounds change a little bit when they appear in clusters. Their edges adapt to the sounds around them so that they can be said in a continuous stream. This is why clusters of consonants are referred to as blends, like blended coffee beans or blends of wine. The difference between consonants, coffee and wine though, is that consonant blends can be pulled apart again.

This pulling apart, or segmenting, is as important as blending and yet seems to get short shrift. By the way, shrift is an example of a relatively uncommon CCVCC pattern.

Teaching blending in the absence of segmenting is like teaching addition without subtraction. And yet I see it all the time.

Children and parents are increasingly reporting to me that their school is placing emphasis on blend work. One boy recently told me that first thing, every morning, his teacher plays a slideshow from a commercial reading program that shows a series of blends in isolation (e.g. bl-, cl-, dr- etc.) and the class has to recite each blend rapidly as one continuous sound.

Many of my other students are seeing the same thing. I asked if they were also taught to segment and they said they weren’t.

Now, many children will learn to read and spell independent of the quality of the method used to teach them. This is fine. But many won’t. Many rely on expert, explicit, systematic teaching of the structure of words to help establish a foundation for fluency, vocabulary and comprehension. This is referred to as systematic synthetic phonics. Teaching blends as one sound is not this.

Here is what I am seeing as a result of this blend teaching:

Missing persons: My students (most with some form of developmental language disorder) are increasingly prone to pronouncing a two-phoneme consonant cluster as one continuous sound, e.g. /b/ + /r/ as a rushed and indistinct ”br”. When they come to spell b-r words, they say the two phonemes but represent them with the initial grapheme only. This results in words like bring  spelled as “bing”. Unwelcome intruders: When reading CVC words, my students have started to insert consonants that aren’t there. For instance, twice last term not one but two of my students said “black” for back in a paragraph they were reading. There was a distinct increase in this behaviour last year, especially among my newer students. Teachers handing out worksheets use the term blend, diphthong and digraph (often referred to as “diagraph”) interchangeably or erroneously, e.g. “The blend ch is followed by the diphthong /oi/ and then the diagraph ‘ce’ in the word choice”.

So how do we tackle this problem?

Teacher knowledge is the key. Blend training is done with the best intentions, but when the evidence base is lacking, the vulnerable suffer. There is no research evidence, as far as I’m aware, that teaching a blend as one sound is good for students, and a study here has shown no additional increase in word-reading speed when poor readers are taught blends.

Firstly, let’s untangle the definitions commonly used interchangeably:

blend – two or more adjacent consonants, either written or heard before or after a vowel diphthong – a vowel sound (not a symbol) made using two places of articulation but requiring only one impulse of the voice, e.g. /oy/ begins with round lips and ends with lips stretched back digraph – a written symbol, which uses two letters but represents one sound, e.g. sh, ch, ph

Secondly, let’s make sure we’re giving children plenty of practice in segmenting the sounds in words as well as blending them. Presenting ready-made blends and blend worksheets is folly. There is no evidence to show that this increases reading ability or speed, and I’m seeing the fallout on an all too regular basis.

Instead, have students generate their own blend sheets by systematically taking each consonant of the alphabet and figuring out which consonant goes with which other consonants. Have you noticed the pattern? When you and your students do notice the pattern, can you figure out why this is the case? This is so much more productive and generalizable than serving random blends up on a plate and treating them as one sound.

I’d love to hear from other practitioners about their experience with this phenomenon. I’d also like to hear from teachers about what they do in the classroom concerning blends.

One of the best aspects of my job is when I get to observe other practitioners in action. I’ve been very lucky to have such generous colleagues. This is the story of the first time I saw someone using Reading Recovery. Yes, it’s a story, an anecdote, and therefore not data, please bear that in mind. If you would like the science on Reading Recovery, you can find it here and here for starters.

When I started my private practice, one of the programs I kept hearing about was Reading Recovery. It seemed like every child who came to me for intervention had had this teaching.

Most of the local schools had a Reading Recovery teacher and every workshop I presented would have a of couple Reading Recovery-trained people there.

I found this slightly odd, as, from what I could glean, it was meant to be a long-term, highly effective intervention for struggling readers. Why did these children, who had accessed this program, then need further intervention?

At this point in my career, I was fairly unaware of the deep divide in theories of reading, known as the Reading Wars. I was on neither side of the fence, since I had no idea the fence existed. I had come straight from a linguistics background and into a working environment that was basically an uninterrupted flow of logical information put to good use.

I had already watched hundreds of children and adults become readers and I really didn’t think that helping people learn to read was a big deal. It was relatively easy to do and my colleagues and I spent our working lives fully expecting our students to read.

The hardest part of my job was getting people to spell well and write fluently. It still is. Spelling and writing are extremely complex processes. They make reading seem easy by comparison.

What caught my attention at this time though, was that Reading Recovery-taught children behaved differently to those who had not had access to the program. I observed three distinct habits in these children that others tended not to have:

When getting ready to read aloud to me, the first thing their eyes would do would be to search around the page for a picture or ask me what the story was about. I use pictureless texts in my clinic because I want the children to decode the letters, not use comprehension strategies to guess words. My training and experience all pointed to this being logical and effective. When actually reading a text and coming across an unfamiliar word, their eyes would leave the word and start scanning around, again, looking for a picture clue. When they weren’t doing this wild, panic-stricken scanning, they would sometimes blurt out a word that began with the same letter as the unfamiliar word and carry on reading. For example, if I had a dollar for every time a child said ‘house’ for home, I’d be retired by now.

Not only did these children need explicit instruction in the alphabetic code, in sequencing, in segmenting and in blending sounds in words, but they needed to spend time undoing the awful habits 1-3. Their time in the clinic sometimes tripled because of the re-learning they had to do.

I began to be able to identify a Reading Recovery child at 50 paces. This made me very curious about how their lessons were conducted. To help gain a more informed opinion, I decided to take a look at the program and its underpinnings.

I started finding answers by observing a Reading Recovery session. I was invited to do so by a friend and colleague who worked in one of the local Catholic primary schools. I had the greatest admiration for this friend. She was a caring, intelligent person dedicated to doing the best she could for her students.

Taj was a seven year-old boy who had made no progress in reading and writing in two years of schooling. As such, he qualified for Reading Recovery. Surprisingly, no formal assessment had been given and no diagnosis had been made.

He had been informally assessed using the Observation Survey and several Running Records from Reading Recovery itself, but this was hardly an indicator of his underlying deficits and gave no instruction about how to tailor his intervention. Instead, he was put at a certain ‘level’ and the goal was to move him up to the next ‘level’.

Marie Clay, the author of Reading Recovery explains:

“For Reading Recovery we do not need an elaborate definition of reading difficulties. One simply takes the pupil from where he is to somewhere else.”

Oh if only that were true. But such a scattergun, vague approach is folly. We have the tools and knowledge to pinpoint a wide range of cognitive and linguistic deficits that impair reading. Good assessment is a gift to any practitioner. I found it disturbing that none of these had been used to gain a clearer picture of Taj.

Still, he was there and my friend was trying to help him. And besides, I’d watched many sessions with other practitioners and had been to dozens of professional development seminars, and I had never failed to come away with some good ideas about how to improve my practice. There was always some nugget, or innovation or something I could learn from watching others in action.

This time it was different. This time I sat there in shock and surprise. As part of my job as a mentor at Lindamood Bell Learning Processes, I would sit back and evaluate other clinicians, so I was used to novices making rookie mistakes. That is not what this was.

I myself have had observers suggest a slightly different approach for a problem encountered by a student and I have embraced that approach with success; a need for tweaking you might say. That is not what this was.

It was quite evident that my friend had spent many hours practising the elements in the lesson. She was no rookie. She delivered clear and precise instructions with confidence and ease. Her pacing was flawless, her manner was perfect, her equipment was organized and on hand and she really did come across as a seasoned professional. She and Taj had an excellent rapport and she genuinely cared about him and treated him with gentle deference at all times.

But for the first time in my career, I spent my observation time holding myself back from screaming, “What are you doing?! How is that going to help this child? What on Earth are you doing?”

I have not reacted so strongly to any teaching I’ve witnessed, before or since (except other Reading Recovery sessions on YouTube). Let me take you through it as well as I can remember it. The order of proceedings may vary from a standard Reading Recovery session since I’m recalling from over a decade ago, but these are the parts that stood out.

Taj came in and pulled out a book they had been practising. It contained surprisingly complex words but was predictable and repetitive with great big pictures and he read it from memory. I thought that this must have been some kind of warm-up, since nothing useful was being taught or learned. I was looking forward to the “enchantingly interesting” texts coming up that Clay talks about in her guidebook.

The teacher then pulled out a new, equally predictable book, but instead of getting down to reading the words, she asked him to point out the front cover, the back cover, and other things about the book that he plainly knew. Time was ticking away and still no teaching or learning had taken place.

The teacher then did the most incredible thing. She told him what the story was about and what was going to happen in the book. Spoiler alert! I don’t know about you, but if you want me to throw a book on the bonfire, just tell me what happens in the story. It’s the same with films. Tell me the plot and I can guarantee I’ll never watch it. You will have spoiled it for me.

So now there is a child sitting there with a big frown on his face, fidgeting, about to stumble his way through an already boring story that he knows is going to go a certain way and who, ten minutes into the lesson, has learned nothing.

More incredulity followed when the teacher, after some lengthy talking about the book, opened it up to the first page, pointed to the picture and then asked him to find a certain word. My memory won’t deliver the precise word to me, but let’s say she asked him to look for the word tree. Here is the dialogue:

Teacher:    There is a tree in this story. What does tree begin with?

Taj:            …umm, t.

Teacher:    Good, now find the word tree.

Taj:            Points to top.

Teacher:    No.

Taj:            Points to tree.

Teacher:    Good.

Me in my head:   Wait. What? Why aren’t you getting him to read the sounds in the word top and comparing it to the word he’s looking for? Why would you leave that opportunity to teach him to read just sitting there? You’re just getting him to guess based on incomplete information. What on Earth are you doing that for?

And so, after a bit more of this pointless shilly-shally word-searching, and after looking at all the pictures, page by page and talking about each excruciating plot point in the story, this yawning boy is directed to the first page again and told to read the book.

He came to a word he couldn’t predict. For the life of me I cannot remember the word, but he made a clear error of omission, in that the second letter, an embedded consonant like the t in stop, wasn’t pronounced. The teacher let him continue to the end of the sentence and then the crazy questioning began. For the sake of an example, let’s say he read ‘sap’ for slap. The dialogue went as follows (with me climbing the walls trying not to interrupt):

Teacher:    Let’s look at this word here. What does it say?

Taj:            Sap

Teacher:    Would that make sense?

Taj:            I don’t know.

Teacher:    What do you see in the picture?

Taj:            (Mutters something about the picture.)

Teacher:    What is the first letter of the word?

Taj:            S

Teacher:    What would make sense here?

Taj:            (frantically looking at the picture): I don’t know.

Teacher:    What other letters do you see?

Taj:            (naming the letters) l-a-p

Teacher:    Can you see any words inside that word?

Taj:            No.

Teacher:    (pointing to the l) Okay, what is this letter?

Taj:            L

Teacher:    Do you know the sound it makes?

Taj:            /l/

Teacher:    Good. So what does this word say?

Taj:            Sap.

This went on for precious minutes until the teacher told him the word and moved on.

Afterwards I asked the teacher if she was aware that Taj couldn’t perceive that he was saying ‘sap’ for slap. And that saying each sound in sequence and being aware that he had to articulate an /l/ sound straight after the /s/ would have helped him. I asked her if she was planning to do any follow up work on embedded consonants with him. She said she wasn’t planning to, no.

Then it was time to write a sentence. Again, I can’t remember if Taj wrote the sentence or the teacher wrote the sentence, but they did the funniest thing with it afterwards. They cut it into pieces, word by word, and Taj had to reconstruct it. It had to be the most pointless ten minutes of teaching I have ever seen. It was the kind of mindless busy-work a casual-relief teacher dreams up in order to take an unofficial break from teaching.

They also played about with some colourful magnetic letters, sorting them into groups based on their colours (!) and naming the letters, but making no reference to the sounds they represented, again, with no real purpose, sequence or system.

This was truly the worst reading lesson I have ever seen, even to this day. Taj was not being helped in any significant way. His needs were being overlooked. The causes of his difficulties were being ignored. The strategies he was being given were nonsensical and went against everything I’d ever learned about literacy acquisition.

And it wasn’t the teacher’s fault. As I said before, this was a friend and a colleague; a nice person with the best will in the world, highly trained and experienced believing she was helping him. It was bizarre.

I read everything about Reading Recovery that I could get my hands on. I spoke to countless Reading Recovery teachers and watched more excruciating Reading Recovery lessons on YouTube to make sure that this teacher was not an anomaly. Indeed she wasn’t.

What I found most disturbing was that she believed she was being helpful, and with no valid pre or post testing, nothing was contradicting her. Taj may very well have progressed through the program, memorizing and predicting the books, but I shudder to think where he is now.

It saddens me to see this execrable program being so widely embraced. Part of the reason is that Reading Recovery is incredibly systematic. Marie Clay wrote with clarity and authority. Her books, from a prose perspective, are a pleasure to read (provided you don’t know anything about teaching reading).

Its adherents are rigorously trained and the organisations behind it have means to distribute it that are staggeringly efficient. It’s just that it’s wrong.

Moves are afoot to rid schools of it in some districts. It’s very expensive and some in power recognize its ineffectiveness, but remnants of those techniques are everywhere; a story for another day.

Some approaches to reading instruction are more likely to bring success, while others bring an unacceptable rate of failure, no matter how well they are designed and implemented.

We need to begin with a better approach than Reading Recovery and its whole language cousins, and we need to ensure that teachers are trained to implement this better approach with the greatest skill possible. It is not enough for teachers to believe they’re helping children to read.

I love music. I always have. I especially like punk and Indiepop from the 80s. My obsession with The Smiths and Morrissey led me into worlds of art and literature I would otherwise never have entered. Punk taught me about politics and animal and human rights. I can honestly say I’ve benefited from my love of music and my life is good because of it.

My messy Morrissey and Marr corner

If you don’t like music, you obviously have a worse life than me.

 

Or perhaps I’m being silly. If you happen to be indifferent to music, as many people are, how would you feel if I sincerely made statements like that?

 

Is it condescending of me to assume that I lead a better life than you because of my hobbies and interests?

 

How about I express pity at your music-empty life and tell you, with concern, that I hope you find a song that hooks you one day? Would you welcome my pity?

 

So why are statements like the one below accepted?

 

“If children develop a love of reading, they will have better lives.”

 

I recently had a small Twitter spat with a librarian who proudly quoted this as her ‘why’ (whatever that means). The source of this quote is a disgraced education pundit called Rafe Esquith.

 

I know many people who don’t read. I have two children who have not developed a love of reading. How dare anyone comment on the quality of their lives? In response to the quote, I wrote:

 

“My literate but non-literary daughter would beg to differ. She lives a rich and full life but does not enjoy reading.”

 

The librarian misunderstood my statement and continued to press the preposterous point by saying:

 

“Does she ‘read with her ears’ audiobooks? Does she enjoy being read to? Maybe she will fall in love with reading later.”

 

The fact is, she has a developmental language disorder, known as dyslexia. Reading is laborious, time-consuming, unpleasant and effortful for her. She can do it. She’s a fluent reader with excellent comprehension, but it takes gargantuan effort.

 

My response:

 

“Nope. She likes sport, films, music. Of course she’ll listen when I read books aloud, but my point is, why should she HAVE to love reading?”

 

At this juncture, another librarian chimed in (I had no idea they hunted in packs):

 

“She doesn’t. I think you’re misunderstanding the quote. Studies show readers vote at higher rates, volunteer more, more involved civically.”

 

Yes, I’m sure those who can read are more likely to vote etc. This has nothing to do with loving reading. So I asked for some sources:

 

“Could you point me to the studies which show actual causation between a love of reading and those attributes? Again, my daughter would deny.”

 

I’m still waiting for those studies. In the meantime, the second librarian had more to say:

 

“The quote doesn’t mean the inverse is true. I hope she finds her ‘hook book’ someday.”

 

I replied:

 

“She feels patronised and condescended to by such a hope. As do I.”

 

I may have hit a nerve, as the next response attests to:

 

“I don’t understand your negativity. I can also say: children who develop a love of exercise will have better lives. Would you object? Peace.”

 

Yes I bleeding-well would object actually. I hate exercise. So does my youngest (the bookworm). We like dancing and tennis and swimming in the sea. These activities give us exercise, but we don’t do them for their exercise value. I have to force myself to go to the gym because I know it’s good for me, but there isn’t a personal trainer in this universe who would be able to make me love exercise.

 

You know that feeling you have when you’re doing something and you think, “This. This is the purpose of my life. This is what I was born for.” That’s the feeling I don’t get when I do housework. I hate housework. It puts me in a very very bad mood. My two younger children know not to ask me for favours if there’s a laundry basket or a broom in my hand. As infants they had extensive vocabularies but when I once showed them an iron, neither of them had a word for it.

 

So, I can do exercise and housework, but there are six million other things in the world I’d rather be doing. Would you really call your life better than mine because my house is messy and I can’t touch my toes? I would call vapid smugness if you dared. So I said:

 

“Actually, the negativity stems from false pity of those who don’t share your love of reading.”

 

The original librarian decided she wanted the last word by saying all she was trying to do was share her passion for inspiring children to love books.

 

This is a noble passion. I love books too. I work with children to help them become readers and writers and if they become readers for pleasure, I’m very happy for them. But I wouldn’t dream of sharing my passion for books through condescension. This would be very uninspiring indeed.

 

I’m perfectly happy with my daughter’s stance on reading for pleasure. She is literate. She gets good marks in all her subjects at school. She chats away on social media, shops online and does all the other things a literate person does. She just doesn’t like books. She, like many people in this world, simply prefers other things to reading.

 

I did a quick Facebook survey of my friends and received many interesting replies. The survey said:

 

How many of you are prepared to come out of the closet as non-bookworms? How do you view statements like: “Children who develop a love of reading have better lives”?

 

Here is a list of other people from that survey who don’t like reading:

 

Illustrator – “I get bored easily when I read, I lose focus and can’t follow the story.”

 

Chemical engineer (a very successful, senior chemical engineer)- “I never read as a child or even a teen and I think I’m doing okay.”

 

Mum of a very bright pair of twins – “One of my daughters doesn’t like to read, I have one book worm twin and one non book worm twin. It won’t stop her from doing well, she just prefers to learn from doing not from reading.”

 

Photographer and disability care worker – “I no longer read fiction. After growing up in a family of bookworms and being one myself until my mid 30s, I often found myself reading until the wee hours of the morning, even when I had to get up for work early. I finally made the decision that I simply don’t have enough time to spend hours of each day in other people’s fantasies. I read fiction to my children for half an hour most evenings but my personal reading is focused entirely on text books and factual information.”

 

When I asked him if his early immersion in fiction gave him a better life he replied that it didn’t, though it did help him escape some horrible reality for a while. We all have means of escape: films, hobbies, friends. It doesn’t have to be books.

 

Another photographer (with, might I say, one of the most enviable lifestyles I know) – “I’m such a non-reader!! I plan on staying that way, so happily. Yep that comment is as stupid as my opinion that children who horse ride live happier lives….oh hang on…no that one is true!”

 

Mum of very bright ex-student of mine – “He reads to learn about the things he’s interested in, he can follow diagrams and instructions that baffle me. He has an organised, sequential approach to putting complex machines together.”

 

Mum of an accountancy student – “She rarely reads, doesn’t enjoy it and finds it a real struggle. She only got diagnosed as dyslexic last year though, which kind of explains it. She has an awesome life, she’s studying accountancy and loves maths! She is also a brilliant artist and rides her mountainbike really fast! People who ride bikes have better lives than those who don’t! FACT!”

 

Translator at the European Commission – “For the record, I’m still far from being an avid reader as an adult. There are other things vying for my attention and by the time I do pick up a book in the late evening I rarely get through more than a page before I fall asleep. This doesn’t make my life any better or worse than anyone else’s.”

 

Graphic designer – “Non reader and my life is frickin’ awesome! I was married to an author for nearly 10 years, so books were a huge part of our lives. I read a lot for a while there, probably because I thought I should. I loved those books, but it never made me thirsty for more… one crappy chapter and I was gone…”

 

Disability support worker (yep, I know a few) – “I hate reading. Give me pictures any day.”

 

I know many more people who don’t love reading, including a screenwriter, a hedge-fund manager and several successful business people. I’m sure we all do.

 

One comment did pluck at my heartstrings though, from the mother of a little boy:

 

“I guess it makes me feel slightly anxious as he doesn’t enjoy reading at all and me and his dad absolutely love it. It was the background to both our childhoods.”

 

It’s that sort of fear and anxiety that makes me cross with the ‘better lives’ statement. Make no mistake, being literate is an essential part of being able to function in a complex society. But a love of reading is a personal thing, not a quality of life deal-breaker. Parents all over the globe fret about their children reading for pleasure because of this fallacy. For goodness sake, relax. Literacy and love of literature are two completely different things. The former is essential and the latter is personal.

 

I do think, though, that you should give Hatful of Hollow (second down on the left of my picture) at least three listens, and if that doesn’t change your life for the better, then you might very well be dead inside.

My 16 year old daughter doesn’t want designer clothes or brand-name devices. She eats everything on her plate, always has. She’s never begged me for new pets, holidays or toys and she’s never had a boyfriend or been to parties or tried tobacco, drugs or alcohol.

 

The downside is that she also can’t explain symptoms of illness or injury or retell anything that’s happened to her outside my supervision. For that reason alone, I confess I have persevered with unproven methods of communication well beyond my very strong doubt.

 

Chloe’s genetic disorder, Cri du chat syndrome, has caused her to have multiple disabilities, including the inability to talk. Her brain cannot control her mouth, which also means she can’t chew.

 

Back in her younger days, I had boundless optimism and very little experience. This perfect mix led me to the doors of Rosemary Crossley at the DEAL Centre in Melbourne.

 

Rosemary was charismatic, articulate, personable and funny. She appeared to us as something of an Australian grand dame who took no nonsense, boomed instructions and spoke most convincingly about her successes with Facilitated Communication (FC).

 

As a lead in to FC for Chloe, Rosemary showed me how to hold Chloe’s arm and hand and help her touch pictures in a folder in order to express simple thoughts. I can’t remember what those initial pictures were now, but I think they bore some resemblance to the PECS (Picture Exchange Communication System) cards she currently has in her classroom.

 

From the very outset, Chloe was extremely reluctant to participate in the FC sessions. She constantly withdrew her arm and looked everywhere but the cards. We took a folder home to practise with and she was intent on crumpling the pages and throwing the cards.

 

Nonetheless we persevered and received funding for an electronic communication device. The device consisted of a board with buttons representing a simple vocabulary, e.g. eat, drink, play outside, watch TV etc.

 

We were able to record our voices for each button and change the pictures, in order to tailor-make the device according to Chloe’s particular vocabulary.

 

The goal was to start with broad concepts and introduce finer ones over time with a view to having Chloe type out her thoughts and wishes on a modified keyboard. I hushed the nagging voices in my head saying, ‘How is she ever going to learn to spell?’

 

I tried as much as possible to let Chloe push the buttons by herself, as her physical disability didn’t prevent her from doing so, but I was advised that holding her arm and watching her eyes would help her express herself more clearly and quickly.

 

Chloe was having none of it. She angrily pulled her hand away and pushed the device to the floor whenever she could. I had seen that behaviour before when we used to try to get her to paint or draw by placing her hand around a brush or a pencil. She would instantly relax her grip, but if you persevered, she would grip the instrument then bite down on it viciously before spitting it out.

 

The consistent message was: Chloe will not be directed and she will not perform. We abandoned FC altogether. Though saddened by the realization that this technique would not help Chloe ‘find her voice’, I was proud of my girl for standing up for herself.

 

This is also why we are very amused by the well-meaning ‘artwork’ that her schools send home at the end of every term. There is very little of Chloe’s effort in any of the wonderful pictures or collages the put into her schoolbag, but I appreciate their effort to get her to participate.

 

What did jar me fairly recently, though, was a note that came home from a very young, very new speech pathologist at the school who had met Chloe for the first time. She took it upon herself to send home a note saying, ‘I think Chloe has a lot to say.’ She was asking my permission to allow to Chloe to embark on yet another PECS cards program. Over the years, I allowed the school to use PECS with Chloe, but she made very little progress and we all accepted that.

 

It was the statement ‘I think she has a lot to say’ that kept running around my mind. The implication was that perhaps if someone did a little more to help her express herself, then we might all be pleasantly surprised. I know that the speech pathologist’s comment came from a good place and a good heart and I respect her optimism, but that statement made me uncomfortable.

 

I’d like to make this very clear: Chloe is not trapped inside a disabled body. She is our beautiful, funny, humorous, affectionate, profoundly disabled Chloe. She is not a tragic figure and I entertain no mawkish Stephen Hawking fantasies about her or her potential. I know there are other disabled people whose expressive language is well below their receptive language, but Chloe is not amongst them.

 

Chloe doesn’t care if people stare at her and in fact is quite adept at choosing the best moments to engage in a type of full-throated, open-mouthed shouting that we affectionately call ‘flip-topping’ – after a famous advert for toothbrushes in which a character had a flip-top head that allowed him to clean his back teeth properly. The toothbrush in question was marketed as an alternative to having such a head. When Chloe shouts, she opens her mouth so wide that it almost looks like the character in the advert.

Some casual flip-topping

Chloe’s flip-topping is usually reserved for libraries, cinemas, heartfelt speeches and restaurants. We have learned not to be too mortified, but do employ an array of distraction techniques to minimize the sonic damage.

 

Chloe isn’t aggressive or mean in any way, but her behaviour is like that of a toddler. She will pull off her hat or hood even if it’s raining, she’ll dive into any puddle she passes if not restrained, she would stay underwater for too long in the pool if you let her, she would play with the contents of the cat litter tray if she could find it, she’ll throw vases, plates and glasses off surfaces for the sheer sensory thrill and crawl across the shards if you’re not fast enough. She once even burned her eyelashes on some birthday candles on her cake at school when one of her teachers failed to heed my one great warning: ‘Her arms are longer than you think and she’s faster than you think.’

 

We don’t normally refer to toddlers as ‘adults trapped in a child’s body’. We have expectations of their learning and growing based on what we know about them and other children.

 

I have formed similar expectations of Chloe, based on what I know about cri du chat syndrome and her progress over the years. I never thought I’d say this, but I’m pretty certain she has reached her potential. Long, laborious effort will not result in any significant improvement in any of her skills. She will not become less dependent on others.

 

Chloe likes being warm, fed, comfortable and entertained. After 16 years of trial and error, observation and routine, she and I have basically established what that means. All the PECS cards in the world are not going to make a difference. Hours are spent on teaching Chloe to differentiate “I want my sandwich” from “I want my banana” – but the distinction will not allow her to live without full supervision. And anyway, she basically just wants to eat, because she likes food. Just give her some food. I can guarantee you that will make her happy.

 

Chloe is a broad brushstrokes kind of girl (though she’ll eat the paintbrush and the paint if you let her). She has no concept of the future or art or literature. She likes music but her preferences aren’t particularly nuanced. She is not interested in animals but is deeply suspicious of birds. I think she must have been flapped at rather distressingly on some outing her respite carers took her on.

 

She will accrue some additional likes and dislikes on her way and will lose some of her interests. She was once intensely entertained by the clothes dryer. The combination of warmth, noise and spinning gave her hours of entertainment for months. Then one day she refused to give it a second glance and that was that.

 

I have been accused by some of abandoning hope. I haven’t done anything of the sort. I have high hopes for Chloe. Of course I do. I hope her scoliosis doesn’t progress to the point that her lungs become crushed. I hope she doesn’t get a fatal infection. I hope that when I am no longer able to care for her that she gets to live her life with plenty of heat, food, comfort and entertainment. I hope that she doesn’t suffer abuse from her carers, which I might never really know and have very little control over. I live my entire life in hope.

 

So the message for people in the field who want to help Chloe ‘find her voice’ is this: she has already spoken. Please try not to spray-paint her with your wishful thinking. Instead, have a conversation with those who know her best and pay attention to her history. I’m not trying to get anyone to abandon hope, but I do recommend embracing reality.

Several people have sent me links to the new Weird Al Yankovic song “Word Crimes”, thinking I’d enjoy it, being in the business I’m in.

You can watch it here.

Nothing could be further from the truth. I cringed all the way through it and though I consider myself easy-going and open-minded, I was genuinely saddened by it. I think the time has come to make a statement about it.

I sit opposite children and adults day in and day out who have language disorders. They courageously struggle with the task of getting words on and off the page. They often work many times harder than those around them just to keep their heads above water in the classroom.

 

“Writes like a spastic” apparently. Nice.

This song, which threatens physical violence towards people who don’t use a prescriptivist version of English is just plain nasty. I have a daughter with dyslexia and to think that some people find that funny, or her written output amusing, or her attitude ‘lazy’ or ‘stupid’ is beyond belief!

People have argued that it’s Al’s satirical take on people who are overly prescriptive, the so-called Grammar Nazis, but let’s not fool ourselves. The target of this song is clearly those who don’t use English a certain way, not those who correct them.

A very well written piece on the subject can be found here.

By the way, I also have a 12 year old profoundly disabled daughter who does in fact drool. Thanks, Al, for bringing international ridicule and disdain to two thirds of my children.

Yes, thanks Al, she is out of the gene pool.