My child met all his benchmarks, he walked early, he talked early, he could rhyme, tell a joke and a ripping yarn and for a long time I th...

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18:40:00 My Red Letter Dyslexia Awareness 0 Comments

My child met all his benchmarks, he walked early, he talked early, he could rhyme, tell a joke and a ripping yarn and for a long time I thought he was learning to read.

When he started school, football cards were all the rage and every time my bright little boy read a story we gave him a pack of football cards, we had albums and albums. However, what I didn’t know was that, in fact, my child could not read. He could not recognise words, he couldn’t spell and he couldn’t write.  Our son, our clever little boy, had managed to get us to read him his little books, he would memorise them and pretend he was reading them to his teacher. It wasn’t until I asked him to read me a new story that I realised that in grade two he was in fact illiterate. I went to the school and asked for help, they made him sit at the front of the class. And then he started to misbehave in the classroom. My son started to become the class clown.

It wasn’t until the school took it upon themselves to assess him for ADHD that alarm bells started going off. If it wasn’t for a part time temporary teacher who told us that the Principal had briefly observed him in the classroom to make an assessment, we would have been none the wiser.  Steadily we began to lose faith in the government education “system”.  Lots of our friends told us to, “wait, he is a boy, he will read”, “it’s ok he can do a trade, he will be fine”.  These were normal comments from parents who had children who were reaching their academic benchmarks, but what if my child wanted to be a Geologist? For three years we plodded along, we employed an ex-school Principal to tutor him. We paid $4,000 for a non-evidence based program. We continued to use non-evidence based programs until we realised despite all our efforts nothing was improving. I felt like such a failure. I love books, I worked at the State Library of Victoria for 15 years, I worked in school libraries, I felt like the worst mother on earth. I could not teach my child to read.

Finally, when he was 8 we decided to have him assessed by a leading centre for gifted children and despite my son having a decoding score on the 5th percentile the University failed to diagnose dyslexia, but they did tell me he was gifted! For 6 months I searched for a solution. Eventually, due to my persistence my child was diagnosed with dyslexia by an American Paediatric Psychologist.

Through the Australian Dyslexia Association we found an evidence based tutor who started to work with him two days a week. Then, my son started to get bullied at school. My son stopped enjoying school he couldn’t understand why these kids would do this to him, and in grade 4 one particular child started calling him a “failure”. My happy child was no more. The school took it upon themselves, without telling me, to send my son to Reading Recovery, a program that should be banned in all school as it fails to help dyslexic kids and is not an evidence based system.  This was an extraordinarily stressful time for our family. Not only did we have the expense of paying for a tutor we decided to remove him from the school and send him to a private school.

It was about this time that I Founded the Dyslexia Melbourne Support Group, now known as the Dyslexia Victoria Support - DVS. 

I wanted to turn my experience into a positive I needed to find a way to help parents find their way through this maze, and stop the waste of time and stress. It is something that I work all my spare time on.  Supporting families for free. Listening to familiar stories of distress, and shame, embarrassment and anger.

Last year I formally complained to the University that failed to diagnose my son and they reviewed his diagnosis against the DSM-5, he now has a diagnosis of dyslexia and a difficulty in written expression from a recognised University. I told the psychologist on reviewing his assessment that had it not been for his mis-diagnosis I wouldn’t have started up the DVG.  Now he also has a diagnosis of dysgraphia from an OT. 

My son is 13, he enjoys his new school and still receives support. His handwriting is gradually improving as he learns to spell and his reading is still slow and inaccurate.

Writing this makes me so sad and so very, very angry. Why in this century, 96 years after the term dyslexia was first used, do we struggle to get help for our children? Why as parents are we humiliated by schools, dismissed and shamed, made to believe we are at fault for not reading to our children often enough. Our schools are failing our kids, our Politicians, despite all the reports by world renowned academics (and we have some of the best in Australia), fail to make the obvious changes necessary and move towards a society, where we support our children with evidence based programs? Why are parents left to pick up the pieces of our broken children? 

Here is my wish for children entering school. Please give them the opportunity my child did not.
• Introduce early screening for dyslexia and intervention using evidence based methods
• Make it mandatory for all Universities who train graduate teachers to provide evidence based research and change from whole word methodologies
• Make it mandatory that every teacher attend professional development for learning difficulties
• Mandate explicit teaching practices and synthetic phonics across all primary schools.
• Ensure that VCAA hand down its findings with regard to accommodations in year 11 and 12.
• Ensure that all primary and secondary school children have access to school counsellors and speech pathology services.

Heidi Gregory

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