My Red Letter competition 2017 – My daughter’s hero Jackie French

Before I found out that I was dyslexic I thought I was dumb, stupid and not capable of doing anything. I couldn’t read and I couldn’t write. At lunch times I used to tell my friends amazing stories about times past, portals, dragon attacks and other worlds. I have always loved books but I couldn’t read them. I thought I would never be able to go on the adventures that paper and ink holds.

When I was 8 I was diagnosed with dyslexia. Mum kept telling me stories about people with dyslexia and how they achieved. One night she read to me Jackie French’s story about her childhood and her first book. Jackie and all the other famous dyslexic authors gave me back the belief in myself. I now believe I can be an author. I now believe I can do anything if I try.

Jackie has also helped a lot of kids find the key to the door of the world of books. Mum says she does a lot for the dyslexic community.

With the help of my tutor Victoria, I have learnt to read and write. My spelling is about as good as Jackie’s! Mum is always telling me to get off the iPad. But when she tells me to put down my book for dinner she says it with a smile as she could have never imagined I would be so obsessed with books. I am no longer afraid of books. I now write my own. Now I can share my stories on paper for everybody to read.

Here is Chapter One of the book I am writing called The Four Of Planet Earth! One my main characters is dyslexic.

Ben got out of bed to the sound of his alarm clock. He ran down the stairs and put some bread in the toaster.

“Hey,” his older brother John said, “what are you doing up?”

“Couldn’t sleep,” Ben said. “I’ve got exams today. I hate exams!” Ben subconsciously tapped repeatedly on the bench.

“Breakfast,” Ben’s mum said happily, calling from the Kitchen. “Chocolate chip pancakes for all.” Mum scooped the pancakes onto three plates. “Ben you look ill.”

“I’m fine,” Ben said quickly, “I just had a late night.” Ben didn’t feel alright. He had that horrible feeling in his stomach.

Ben grabbed his school bag and walked out the door.

“Hey! Hi!” said his best friend Richard as he waved to him. They always walked to school together since they were eight years old.

Richard’s hair was black and springy, no matter how hard he tried, his hair would always stick up. His uniform was perfect cause his mum always did his tie and dusted his pants. He was great at bike riding.

“Ready for exams?” Richard asked

“No.” Ben admitted, he tried to stay positive as they walked to school. They walked down the corridor to their lockers were and Ben opened it up. A water balloon popped in his face.

“It works every time,” said a familiar voice.

“Annie,” Ben sighed.

“Hi,” said Annie as Ben turned around.

Annie’s hair was brown, messy and it stuck up in every direction. Annie’s eyes were ocean blue and her uniform was messy. Instead of a skirt Annie wore pants and her tie was loose. She was an excellent swimmer and she loved art.

“Where’s Tilly?” Ben asked

“preparing for the test,” Annie said.

Ding ding the bell went.

“We better get to class,” Richard said. Ben sat down at his seat, his hands trembled.

“Hey there shaky boy,” said an unfriendly voice.

“I’m just a bit nervous that’s all,”Ben stuttered.

“Oo I’m just a bit nervous.” The voice teased.

“Leave him alone Steven,” Richard said backing Ben up. Steven walked away.

“Thanks.” Ben said.

“Don’t mention it,” Richard replied.

“Ok guys what happens if l go at the bottom of the class?” Asked a voice behind Ben.

“You need to calm down Matilda, Annie’s at the bottom of the class,” said Richard

“I can’t help that I’m dyslexic,”Annie complained. “I’m going to get a drink from the bubblers.” Annie ran out of the classroom.

“Ok I’m fine.” Matilda said taking a deep breath. Matilda’s hair was bright red, she had plaited pigtails and she wore thick lens glasses with a purple frame. Her uniform was even neater than Richard’s, which was almost not possible. Her tie was always straight and her skirt had no creases. Her tights had no holes, she was amazingly smart, she new every thing.

“Sit down every one!” Yelled Mrs Mater “Miss Caper please hand everyone a test paper.”

“Yes Mrs Mater,” Matilda squeaked.

Matilda handed Ben a test paper. Ben gulped.  Then he heard lots of  screams. People ran down the hallway. “Quickly close the door.” yelled Mrs Mater about 5 seconds later a flood of water rushed past.

None of the kids in the school got Hurt. Annie ran up to them, “Oh my god! Oh my god! Oh my god,” Annie said.

“Where were you?” Ben asked.

“Like I said at the bubblers,” Annie answered. “I ran up to it, there was this rumbling sound and splash a hole gush of water came out.” Annie exclaimed.

“And you didn’t get taken out by it?” Matilda asked.

“What?” Annie cried.

“You didn’t get taken out by it?” Matilda asked again a little louder.

“No it just rushed past me,” Annie yelled frustratingly even louder than Matilda.

“Wow that’s really cool!” Richard exclaimed.

“No it’s not, I think I’ve gone mad.” Annie cried.

“That’s the the most likely cause,” Richard said calmly.

“Oi! You would have freaked out too,” Annie complained, “No way! It’s fine, you haven’t gone mad,” Matilda said.

My daughter is 12 and she finished writing her book over the school holidays. 12000 words. She still has to edit it which will be a learning process with her tutor. Like any good writer she is avoiding the editing stage! She has enjoyed writing it immensely. Only her sister has heard the full story so far. Her sister demands chapters to be read to her!

Click here to read about the My Red Letter Campaigns.

http://www.myredletter.com.au

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The Reasonableness of Reasonable Adjustments!

  • Reasonable adjustments are not cheating.
  • Reasonable adjustments are not so a child can avoid work.
  • Reasonable adjustments are not unfair to other students.
  • Reasonable adjustments are not rocket science.

Reasonable adjustments are essential for students who can not complete class work at a level expected in the classroom. Schools are most certainly legally obliged to implement any adjustment for a child with dyslexia that is deemed “reasonable.” Reasonable adjustments should be adjusted over time and individualised for the student with consultation of parent, guardian and/or student.

Reasonable adjustments are a legal right under the DDA and The Disability Standards for Education. Students, parents and professionals all have a right to be involved in the process of determination of reasonable adjustments. “An ‘adjustment’ is a measure or action taken to assist a student with disability to participate in education and training on the same basis as other students. “Student Diversity.” Student Diversity – Students with Disability – The Australian Curriculum V8.3. Web. 31 Mar. 2017.

“Perhaps the most significant feature of the Education Standards is the introduction of a positive obligation on education providers to make ‘reasonable adjustments’ to accommodate the needs of students with disabilities.[355] The Standards also impose an obligation on education providers to consult with affected students or their associates in relation to such adjustments.[356]” Admin. “Federal Discrimination Law: Chapter 5 The Disability Discrimination Act.” Admin. 16 Dec. 2012. Web. 10 Feb. 2017

  • You should not except a school’s decision that a request is not reasonable.
  • You should not accept a schools insistance that Dyslexia is not covered by the DDA and Education Act.
  • Many schools are not aware of their legal obligations under the Acts and they should be!

Dyslexia is a disability recognised under the Disability Discrimination Act 1992 (DDA) and the Disability Standards for Education 2005 Act. These acts are federal legislation so cover every educational institution in Australia in the public and private sector. The DDA also covers discrimination of the basis of disability in all areas of Australian life including the workplace.
Disability Discrimination act 1992

“disability, in relation to a person, means:
(f) a disorder or malfunction that results in the person learning differently from a person without the disorder or malfunction;
Disability Discrimination Act 1992

You can seek further clarification with the Department of Education, Human Rights Commission or Anti-discrimation organisation in your state.

“To determine if an adjustment is reasonable an education provider must properly consider:

  • The barriers, needs or challenges confronting a student with a particular disability
  • The views of the student or their associate
  • Whether the academic standards or essential requirements of an educational course are affected by the adjustment
  • What benefits or disadvantages the adjustment might have on other people affected by it
  • The costs and benefits of making the adjustment”
    National Disability Coordination Officer Programme, Disability Standards for Education (2005) https://www.ddaedustandards.info/dda-edu/obligation-to-make-reasonable-adjustments.htm

 

Further information on adjustments to the Australian Curriculum can be found at
http://www.australiancurriculum.edu.au/StudentDiversity/Pdf/StudentDiversity

Each child will have different needs in the classroom. Adjustments will change as a child moves through the school system and with remediation. Adjustments are not a substitute for good quality instruction but are essential to enable a student to access the curriculum whilst remediation is being undertaken. Adjustments are even more essential when a child is well behind their peers in Secondary School where the gap has become quite significant.

Examples of possible adjustments to learning

Reading

  • Only ask the student to read aloud if student is comfortable.
  • Allow use of audio books.
  • Allow use of assistive technology such as c-pen and text to speech software.
  • Limit amount of reading.
  • Provide outlines, summaries, vocabulary words and preview questions.
  • Provide texts appropriate to reading age of student.

Spelling

  • Provide digital dictionary
  • Teach the rules and structure of the English Language.
  • Provide word banks.
  • Do not focus on the marking spelling unless it is the goal of the task.
  • Allow use of assistive technology such as predictive spelling and specialised programs.

Writing

  • Allow use of assistive technology such as snaptype, screen shots, predictive spelling and word processor.
  • Allow extra time to complete tasks.
  • Do not expect large amounts of writing.
  • Avoid copying notes from the board.
  • Give student opportunities to express knowledge verbally.
  • Give student scaffolds, graphic organisers and writing frames.
  • Teach explicitly sentence and paragraph structure.

Organisation and memory

  • Break large tasks into steps.
  • Make instructions short, simple and clear.
  • Ask children to repeat instructions back to make sure they have understood.
  • Clarify and simplify directions.
  • Use visual aids.
  • Make allowances for poor memory in terms of handing in notes and in general school organisation.
  • Sit student with a peer helper.
  • Simplify worksheet design.
  • Email parent important information, homework and assessment tasks.

 

See Dyslexia and the Law Fact Sheet link which outlines the education act and Disability Discrimination act and how they apply to Dyslexia and reasonable adjustments. https://www.dropbox.com/s/1sci4cews929j57/Dyslexia%20and%20the%20law%20Fact%20Sheet.pdf?dl=0

 

 

 

 

 

 

Never give up, never surrender

To all the parents who are on the start of their dyslexia journey.

  • Seeking answers.
  • Finding the right path.
  • Fighting for help.
  • Struggling to take a breath.
  • Heartbroken over their child’s suffering.
  • Crying themselves to sleep.
  • Navigating snake oil.
  • Waking in terror of their child’s future.

It certainly feels like I’ve been travelling the bumpy dyslexia road for a lifetime and sometimes it feels like an eternity.

I wish, I regret….guilt

  • I wish I had listened to my inner alarm bells sooner. I was a high school teacher. I trusted the knowledge of the primary school teachers.
  • I wish the school taught explicit systematic phonics and structured literacy better so she didn’t get so far behind.
  • I wish they had identified and intervened earlier with evidence based methods. Reading recovery was a smoke screen which gave us the impression she could read but in its wake was a child who still could not read with no self esteem intact.
  • I wish I took her to a psychologist sooner as I had no idea how bad her anxiety had become. Paralysing her every moment at school and seeping into every corner of her life.

Parental guilt can eat you alive. Don’t let it. It is the school’s responsibility to teach your child to read. They are suppose to do this! They are suppose to know how to do this! The important thing is that you are fighting for your child now with every inch of strength you have.

Arm yourself with knowledge! This is your weapon! If the school doesn’t know what should be done then it is knowledge that will give you power to demand what your child deserves! Every child has the right to an education!

My daughter has come so far that I have to remind myself where she used to be. It is not about comparing her to others but it is about how much she has managed to achieve despite the odds. She is unrecognisable to the scared and broken child she once was!

Dyslexic children can learn to read, love books and be happy to go to school. All I ever wanted was to pick up my child from school and see a smile. Nowadays that happens most of the time. My daughter has dyslexia, dysgraphia, anxiety and maths difficulties. So school is still tough some days. But she is moving forward and we have way more good days than bad days. She reads and writes for pleasure and with enthusiasm.

It has taken a lot of sessions with a structured literacy tutor, assistance and understanding from the school and some wonderful teachers willing to learn and listen! These days I ring and write to the school less! We have far more wins than losses! It has taken over 2 years to build up her self esteem and overcome the learned helplessness. Teaching her to read took far less time than putting her back together.

We used to hear my daughter say frequently the words no parent wants to hear;

  • I am stupid!
  • I am dumb!
  • I can’t do anything!
  • I don’t want to go to school!
  • I hate myself!
  • There is no point trying!
  • I give up!
  • I hate reading!
  • I will never learn to read!

My daughter now believes in herself. She now believes;

  • She is smart and talented.
  • She has strengths and weaknesses like anyone.
  • She is capable of learning anything but sometimes she just has to work harder.
  • She can manage her anxiety demon and push through the hard times.
  • That being dyslexic is awesome and she has been empowered by being a member of an amazing dyslexic community.

You will be proud of them everyday because every little thing they will have to fight for and work hard for! They will come out the other side strong, resilient and capable.

You will cry. You will cry together and you will cry alone. You will cry with each success and with each set back.

One day they will look back on their school days knowing that their parents never gave up on them. They will understand one day how much you fought for them and how you could always see their brilliance!

Never give up on your child! Never let them give up on themselves! They will do amazing things. It might just take them a little longer or they may go down a different road.

Never give up and never surrender! 

Parent Fact Sheet

See the link for basic facts and where to get more help. https://www.dropbox.com/s/wjut52pjgzuf0qd/Parent%20Fact%20Sheet.pdf?dl=0

 

Code Read Dyslexia Network

I have had the great privilege of meeting some of the most amazing Dyslexia advocates in Australia. Through this association I have been involved in the process of setting up a much needed national Dyslexia charity in Australia.

The following information is extracted from the first Code Read Dyslexia Network Newsletter Summer 2018 by Dr Sandra Marshall BMBS FRACGP Chair

This network is the culmination of almost three years work by a group of national and state dyslexia support groups, who saw the need to formalise our groups into one national not for profit organisation that could represent families and adults whose lives are shaped by dyslexia in Australia.

We became official at the end of 2017 with the generosity of many people and organisations, notably the marketing gurus Principals who generously provided our incredible branding and logo, Ashurst who helped us register our NFP and got us off the ground, BellChambers Barrett who have agreed to be our Auditors and our amazing financial backers including David Pescud (who then also joined us a Director) and all those amazing people who have donated to our Crowd Funding campaign, we thank you all!

In 2018 we have a target to establish a comprehensive dyslexia friendly website, continue to create alliances nationally with key bodies throughout Australia, continue to campaign governments, universities and schools for inclusion of dyslexia friendly (& evidence based) practices, establish a National Youth Ambassador Program, con- tinue our work supporting and being the voice of fami- lies and those living with dyslexia.

(Oh and sail to Hobart in a yacht race known as the Rolex Sydney to Hobart)

Our Vision

For all people with dyslexia to be understood, acknowledged , empowered and to have equal ac- cess to opportunity.

Our Mission

• We will raise awareness about dyslexia.

• We will support and empower those with dyslexia and their families.

• We will work with government and other decision makers to improve the education system and work- places for those with dyslexia.

• We will work to enhance the everyday experience of people with dyslexia.

Who we are

We are Australian volunteers who are aware that children with dyslexia are being unnecessarily dam- aged by the education system, as their needs are not being recognised and given the assistance they re- quire. We are not prepared to let the current situa- tion continue when the best practice approaches are already available.

· We include parents, carers, educators, health pro- fessionals and people with dyslexia. Who have all been impacted by dyslexia.

· We support people with dyslexia and their families and we seek to disrupt the current situation.

What we want

· Early screening and identification of literacy difficul- ties including phonemic awareness screening in Pre- school and Kindergarten and a phonics check in Year One.

· Educators that are knowledgeable about dyslexia and how to identify it. And using current evidence based teaching practices.

· Effective evidence based literacy instruction in schools and high expectation for all students.

With an official organisation comes costs to keep going. We would like to ask you or your Company to consider a tax deductible donation. We have an ongoing Crowd- funding Page where donations can be made.

Our Crowdfunding site can be found at:

https://codereadnetwork.org/

and our bank details for direct deposit are: Code Read Dyslexia Network Australia Limited BSB 032582 Account no. 205853

Alternatively if you would like to contact us by mail our postal address is: Code Read Dyslexia Network,

PO Box 493, Curtin ACT 2605

The Directors and Founding members of Code Read Dyslexia Network include parents, carers, educators, health professionals and people with dyslexia. We have all been impacted by dyslexia.

Our Board of Directors/Founding Members:

Chair: Dr Sandra Marshall, Vice Chair: Carolyn Merritt, Secretary: Julie Hermansen, Treasurer: Jen Cross, Sarah Asome, Anita Hellevik, Susan Milner, David Pescud

Additional Founding Members:

Julie Mavlian, Tanya Forbes, Belinda Dekker, Heidi Gregory, Sandra Tidswell, Kelly King, Leanne James, Victoria Leslie, Elise Cassidy, Victoria Hipkin

Please checkout Code Read first newsletter and links below.

Summer Newsletter https://www.dropbox.com/s/twt9a49bmfwzf7m/Code%20Read%20Dyslexia%20Network%20Summer%20Newsletter.pdf?dl=0

Website: https://codereadnetwork.org/

Facebook page: https://www.facebook.com/CodeReadDyslexiaNetwork/?fref=ts

Twitter: Code Read Dyslexia @codereadnetwork

Dyslexia and the journey to the magical world of reading.

Almost every parent who joins our support group expresses fear about whether their child will ever learn to read. By the time they reach our group the education system has failed them and their child. The parents are quite distressed because they have a broken child and don’t know what to do.

The answer we give them is YES, with evidence based intervention, they most certainly can learn to read. With systematic explicit instruction in Phonemic Awareness, Phonics, Vocabulary, Fluency and Comprehension many children would never even see themselves labelled with Dyslexia or require intensive intervention.

My daughter now reads the same books as all her friends for pleasure. A little slower perhaps but she has a slow processing speed. Though the journey to the love of reading was a longer road than it should have been.

My daughter was read to from infancy. Books were how we would calm her, get her to sleep, comfort her when she was sick and bring her out of a rotten mood. We journeyed as parents with her to many far off places. Her first sentence was “read dis book yep!”. She would say this when she learnt to walk and would toddle around the house all day carrying a book and demanding its secrets to be revealed!

So she went to school, with a bounce in her step, adoring books and ready to read! Despite a lovely Kindy teacher she hit a road block. She hit a road block that so many kids will hit,Dyslexic or not, when instruction is not explicit or systematic enough for quick reading development.

Intensive explicit literacy instruction from a specialist tutor in year 3 taught her to read and write. The tutor 2 hours a week supported by daily hone reinforcement achieve what 3 years of school did not. Tutoring by a structured literacy tutor was in no way a quick fix but she finally broke the code needed to make her a reader. Unfortunately because intervention was delayed she had developed a fear of reading. The fear and negative associations that had been fostered by poor literacy instruction in a “Balanced Literacy Environment”.

In the end her love of books and the skills she has learnt from her tutor outweighed her fear of reading. My daughter,at age 12, will now disappear into the world of books quite often. She reads when she is angry, bored or anxious. She reads to help her sleep. She says she prefers books to movies. We have a chuckle every time I have to say “put the book down” because she is late to dinner and school because its always just one more page. We both know how hard the journey has been.

As my daughter now says “books are the portal to magical worlds!” We need to give all children access to the same magic.

Children with Dyslexia, with appropriate evidenced based instruction, can and most certainly do learn to read. Dyslexia is no excuse for a child not being able to be taught to read. If a child with Dyslexia fails to learn to read we should be looking at educational practises rather than using Dyslexia as the “get out of jail free card” for ineffective teaching methods. Children at risk of reading failure must be identified early before secondary issues manifest and before they are so far behind the reading gap becomes a insurmountable chasm.

Please see the attached fact sheets
Structured literacy fact sheet
https://www.dropbox.com/s/jpe9ep1i1e9wc8m/Structured%20literacy%20Fact%20sheet.pdf?dl=0

Tutor fact sheet
https://www.dropbox.com/s/43kificv5c1yxt0/Tutor%20fact%20sheet.pdf?dl=0

Dyslexia and Demons

Facing the fear of school

The vast majority of children with learning disabilities have some emotional problem associated with the learning difficulty” Abrams 1986

I sit here while my children play happily with their friends…..feeling sad, anxious and a little sick. It’s the last day of school holidays and tomorrow is the day we dread every year. The day filled with fear and doubt. The day that marks the beginning of another year I have to face as a mum of a child with multiple learning difficulties and anxiety.

Tomorrow is also extra special as it marks the start of High school. I taught high school so you would think I have nothing to fear…..but I know the reality of what she may face. I know, despite great groundwork laid down by the very professional and caring Learning Support Teacher, that there will be teachers who do the wrong thing, say the wrong thing, ignore all professional advice and make our lives difficult!

Our visit to the psychologist on Wednesday went well. We have great management in place. Cognitive Behaviour Therapy at age 8 gave me back my happy child that I had not seen for such a long time! Last year was the first year since year 2 my daughter didn’t have an anxiety vomit on day 1! She has come so far that her anxiety for the start of the year is somewhere close to within the normal range for any child off to highschool without her main friends. This year she has been quite brilliant and I’m so proud of her!

I still worry. She still worries. Despite great anxiety management, work on her self esteem, strategies to battle the learned helplessness the scars still remain. The mental health side of things holds my child back far more then her learning difficulties.

“Research has shown that individuals with learning disabilities;
_may experience increased levels of anxiety.
_may be at greater risk for depression.
_experience higher levels of loneliness.
_may have a lower self-concept.
_are at greater risk for substance abuse.
_may be at greater risk for juvenile delinquency”

Adapted from Great Schools 2016

It comes as no surprise that children with dyslexia suffer from a much greater rate of mental health issues. The moment they walk into a classroom, where literacy is the focus, they are confronted daily with their greatest area of weakness. The expectation is that learning to read is the initial purpose of school. My daughter first cried going back to school in term 2 of Kindergarten. She had a lovely caring teacher but unfortunately she wasn’t receiving the explicit literacy instruction that she needed.

When a child fails in the primary task of schooling they are forced to judge themselves, are judged by other and live daily in a world of stress. That stress follows them home in the form of homework and adult expectations. Only the most resilient children can survive such a traumatic and constant onslaught. This often results in feelings of embarrassment, humiliation, anxiety, anger, frustration and guilt. Eventually a situation of learned helplessness results as the student will no longer even attempt to do something new or something they have failed in the past. They see no point in trying as they are convinced they will fail. Anxiety will increase the impact of dyslexia leading to a vicious cycle of increased anxiety, decreased motivation, frustration and failure.

My husband in recent years changed companies. For 2 years he battled a job that he hated. He gained weight. Drank more. Was constantly stressed and cranky. So he changed. Yet we ask a child to walk into a place everyday where they are faced with failure. They are tasked with learning the most difficult skill they may ever learn. Reading. Yet if not supported and instructed well they will face 12 years of heartache and failure.

No child should ever be afraid to go to school. Without the feeling of safety and support we are not creating an environment in which learning will occur.

We need to…..

*Ensure all children receive evidenced based, rigorous literacy instruction.
*Identify those at risk of reading failure early, early and early.
*Ensure all children who are struggling receive evidenced based intervention.
*Identify children at risk of mental health issues early.
*Ensure children receive professional advice for mental health.

Please see Mental Health and Dyslexia Fact Sheet also available in Fact Sheet menu. https://www.dropbox.com/s/zvg9ks1y6vzujn7/Mental%20Health%20Fact%20Sheet.pdf?dl=0

References
Abrams, J. C. (1986). On learning disabilities: Affective considerations. Journal of Reading. Writing, and learning Disabilities. 2, 189–196.

https://www.greatschools.org/gk/articles/learning-disabilities-and-psychological-problems/

I don’t believe in Magic cures, Unicorns or pink bunnies!

(My daughter is very unimpressed by this title! She loves unicorns!)

This blog underlies the fundamental principles of my blog and hence my tag line “I take no prisoners!” As an administrator of Dyslexia Support Australia and on twitter I have been viciously hounded for my stance on “alternative therapies”, including appalling private messages and personal abuse. I believe that parents deserve to be given all the evidence, or lack there of, about a potential therapy before making an informed decision. I’ve been frequently called closed minded. But there is no point in being so opened minded that your brains fall out!

Dyslexia attracts more than it’s fair share of magic cures! Some are downright ludicrous and so far from our understanding of Dyslexia that it is incredible that anyone would fall for their slick marketing campaigns. Music to reboot brain waves, camel milk, funny electrodes that you stick on your head, coloured prisms, wiggly lines on computers, balancing on one foot, mental imagery, orientation points and many more! When marketed with enthusiasm, plenty of cash, wondrous anecdotes, and science terminology sprinkled in for good measure, they dazzle parents desperate for a quick solution to their child’s struggles.

Unfortunately the current education system in Australia does not address dyslexia adequately opening the door to a range of Dyslexia “treatments”. Parents are desperate and feel powerless, thus making the lure of well marketed alternative therapies irresistible. Evidence based remediation for reading difficulties can be a long and arduous road making “shiny cures” that promise instant or quick fixes tantalising. Due to a significant lack of understanding of Dyslexia, alternative therapies are often recommended by teachers, doctors, speech pathologists and psychologists who fail to assess the evidence for these practices…..I have heard many parent stories in our support group of “alternative therapy” recommendations from professionals.

But how do we know if the therapy is not a groundbreaking new treatment that is just being ignored by mainstream science. How do we seperate the snake oil cures from the exciting potential new intervention?

Scientific investigation!!

As Barry Beyerstein pointed out “Though most solitary visionaries ultimately turn out to be cranks, every so often one proves to be the pioneer in a new and important branch of science. It is well to remember, though, that the heroes of these rare success stories brought the initially doubting fields around by force of evidence, not mere conjecture and special pleading. It is up to the claimant to support his or her own case and the scientific community is generally well-served by its institutional scepticism.” Beyerstein, B (1995).

Peddlers of treatments and interventions aimed at children with learning difficulties have a moral obligation to support their wild claims with strong empirical evidence. The more exaggerated the claim the greater the need for valid research. There are far too many products on the market that have been around for decades, fly in the face of what we understand about Dyslexia and have been “invented” by someone whose background is not remotely connected to any discipline with expertise in Dyslexia. Even when they believe in the validity of their treatment the onus is on them to prove it works before they possibly negatively affect the lives of so many families. The responsibility does not fall upon the scientific community to unmask the flaws in your product!

“Consumers should expect providers to go to the market with already-tested, replicated, and high-level evidence before they ask people to sign-up to an expensive intervention. We don’t expect cancer patients to organise their own randomised controlled trials of new treatments, so why should it be left to schools (who don’t typically have the appropriate expertise on staff) to stumble around and try to work out whether an education intervention is an appropriate investment above and beyond what they are already doing (or could be doing)?” Professor Pamela Snow (2015)

The failure of such interventions on struggling children wastes not only limited financial resources but can also have a significant psychological impact on children already vulnerable to self esteem issues, anxiety, depression and learned helplessness. The promise of a solution for a struggling learner is tantalising but failure of the touted solution when promises were grand can have a serious impact. Delay in appropriate remediation can be catastrophic as research shows early intervention is paramount.

“While the use of a nonvalidated approach may not pose an imminent threat to the safety of individuals, it could deprive people of exposure to effective interventions, waste valuable time, and provide false hopes that may lead to feelings of discouragement after the approach fails to produce the desired outcome.” Hyatt, Keith J.; Stephenson, Jennifer; Carter, Mark (2009).

Despite scientific evidence to the contrary or the complete absence of research many therapies rely on glowing testimonials and anecdotes. Unfortunately when parents have mortgaged their house and put all eggs in one basket they seemed compelled to convince others of the virtue of this miracle treatment. Not only do they want to believe in the treatment, they need to believe in the treatment. Reliance on testimonials and anecdotes by a treatment intervention flies in the face of scientific theory. Psychological effects of treatments such as the placebo or Hawthorne effect, particularly with struggling children suffering from low self esteem, can produce significant temporary outcomes which need to be accounted for by scientific investigation.

Testimonials and anecdotes are unreliable as they are subject to selective positive memories, bias and self deception. Even in scientific research early investigations can be falsely positive due to unintential bias and enthusiasm by a researcher keen on a new treatment and new research tends to be a small sample size.

The fact remains there are evidence based interventions for dyslexia that have a proven track record of efficacy. Systematic and explicit phonics has held up to frequent scrutiny. Metaanalysis research in 2014 of a range of intervention studies found that “The results revealed that phonics instruction is not only the most frequently investigated treatment approach, but also the only approach whose efficacy on reading and spelling performance in children and adolescents with reading disabilities is statistically confirmed. “Katharina Galuschka, Elena Ise, Kathrin Krick, Gerd Schulte (2014)

To delay effective evidence based treatment in exchange for alternative therapies can have a huge cost. Parents, educators and health care professionals have a responsibility to children in their care to demand valid research evidence for dyslexia interventions. It is time education applied the same standards of evidence as the medical community. Without evidence we are floating children in a world of fairytales and broken promises.

The reality is I could not sleep at night if I thought the lovely parent anecdotes in our support group were the only information parents recieved when making life altering decisions for their child. As heartwarming as a child’s belief in unicorns and pink bunnies is, it is more satisfying to think all kids could read fantasy stories too!

References
http://www.sld.cu/galerias/pdf/sitios/revsalud/beyerstein_cience_vs_pseudoscience.pdf

http://pamelasnow.blogspot.com.au/2015/05/why-not-everyone-is-enthusiastic-about.html

https://www.researchgate.net/profile/Jennifer_Stephenson/publication/236777599_A_Review_of_Three_Controversial_Educational_Practices_Perceptual_Motor_Programs_Sensory_Integration_and_Tinted_Lenses/links/546a68c70cf20dedafd38827.pdf

https://www.ncbi.nlm.nih.gov/pubmed/24587110