Finding your Dyslexic Tribe is priceless

And Yet again I find myself in social media defending the usefulness of identification of Dyslexia. Also this week I have had to counteract a teacher saying learning difficulties don’t exist but that is another story. This has come at a time in my daughter’s life when she has finally found her tribe. As my daughter has just become a teenager and suffers from anxiety fuelled by multiple learning difficulties it has become so important that she feels like she belongs in this world. That she feels she is valued for who she is and what she can do. That there are other kids like her. Teens need to feel they belong as they navigate a difficult time in their life. As a high school teacher I have seen many times the sheer pain of the kids who don’t find their tribe.

My daughter attended a high achieving primary school where many kids are heavily tutored from preschool age and academic success was the number one priority for most of the parents. She had some lovely friends who valued her for her storytelling at lunchtime, her quirkiness and her kind heart. They would defend her endlessly when casual teachers had a go at her and make sure she understood her work. But one thing her friends could not do is understand what it is like to walk into a classroom everyday and struggle surrounded by children who seem to learn effortlessly.

Having me as a parent has given her access to a strong Dyslexic community and she has met many kids with Dyslexia which helped putty some of the holes in her self esteem battered by years of failure. She has the great privilege of having a tutor who has Dyslexia and is friends with her Dyslexic daughter. Her tutor says that her greatest qualification as a tutor is her Dyslexia and her ability to understand her student’s struggles. Not being able to read in year 5 and going on to get a Masters from Cambridge shows her students anything can be achieved if you work hard enough! Having adult and older teen Dyslexics to look up too is so important.

High school this year has brought many challenges, especially leaving friends who she has relied on for so long. But thanks to a school, who has a brilliant transition program for kids with difficulties, my daughter made some friends who get her before the start of the school year.

My daughter spent the holidays bonding with her new Dyslexic friends. She said to me E has a brilliant mind and she is even more awesome when she is not taking her ADHD meds. I said that must be lovely for her to hear that someone appreciates her for who she is. Her reply was that I know you tell me all the time how creative I am and how good my mind is but you are my Mum and you have to say that. For kids the same age to appreciate me for who I am it makes me feel good about myself. If she fumbles over her words she knows her friends will not judge her.

On the way home from an awesome time with one of her Dyslexic friends I said to her “You have found your tribe haven’t you?” Her reply was the biggest smile I have seen in a long time.

Her new friends all forget things. They all actually forgot that they had memory issues and laughed hysterically at that. They struggle through their work together in class. They go to learning support together. They complain about the teachers who don’t get it and praise the awesome ones that make school bearable by actually implementing their adjustments. They giggle when they can’t add up while playing games rather than hiding their weaknesses. While other kids in class are calling them dumb their friends are telling them the opposite and appreciating them for exactly who they are.

Through our support group my daughter also writes to another year 7 kid with Dyslexia who was feeling alone. They use snail mail. Her pen pal has lovely writing and she told her. She also told her she types because she has dysgraphia and her handwriting is not so good. They share struggles but also write about normal stuff. They both know no one is going to judge them for their spelling or grammar. My daughter actually smiles when she sees a spelling mistake in her pen pals letters.

The word Dyslexia has also as a parent allowed me to find my parent tribe. I have met some of the most brilliant Dyslexia advocates through my volunteer work. Determined mums mostly who are fighting to get the system to change after watching the horrible toll illiteracy has on our children. My daughter’s tutor has become a firm friend. She is one of the few people who get it when the days are hard and simple things go really wrong. We listen to the daily struggles of our kids without judgement and we know the other gets it!

It is quite lovely (I’m not sure how to describe it) to be around school mums who get your child’s struggles. Nothing gives me more pleasure than to sometimes be able to give advice and help to my new parent friends. Funnily enough last year I chatted online through our support group to one of the mums. Giving her advice about tutors in the local area. Then our daughter’s went to the same school and became friends and neither of us realised we had talked online and by then we had met in person. I know I’m not going to have to get embarrassed about grades. I know I can complain about my child’s resistance to getting her assignment done. I know I can talk about having to help my child structure her essays, research and edit without judgement. We were all feeling a little sick at the idea of an end to school holidays.

With these school Mum’s I don’t have to listen to what they think are their parent struggles when having just those struggles would make my week awesome. Like  parents endless turmoil choosing between schools with the greatest academic rigour. Oh the pure joy of a decision like that. Whilst at the same time I am meeting with learning support at the local High School grilling them with questions. Trying to find a high school that my daughter would be able to survive was my main goal. A high school where she didn’t come out with worse mental health and some of her self esteem still intact.

Other parents don’t really understand what it is like and nor do most of the relatives. Don’t get me wrong other parents have been supportive in the past but you can never understand the constant battles or the daily management needed with a child with Learning Difficulties particularly mixed in with the inevitable mental health issues. I know because I have another child who passes through life with a smile on her face and is absolutely adored by every teacher who has ever had her. She does not approach task with trepidation and the scars that constant failure bring. She approaches everything with determination and persistence.

Talking to my daughter’s new friends parents the other day I mentioned that one of her best friends dumped her and joined the “popular group”. They asked why and I said its because she is a little odd and quirky. She also couldn’t cope with the anxiety which turns her sometimes into silent and no fun. Their reply was to them she was normal and she should fit right in. They also get the anxiety thing. One friend was reluctant to sleep over as she doesn’t know me well. My daughter and I made sure she didn’t remain anxious. Because we can see it, manage it and understand it. Whereas at times I’ve felt embarrassed when my daughters anxious behaviours make her look like a brat child or an unfriendly one.

My daughter’s friends are the only reason that today on Day 1 of Term 3 going back to school is bearable. Last night and this morning the hand wringing and crankiness started with the rise of school anxiety. Better than it used to be. Doesn’t happen for a week and no longer any vomiting. So when she goes to school today she knows her Dyslexic friends are probably feeling the same. So don’t tell me we shouldn’t identify kids with Dyslexia or use the label. In my other blog “The Dirty D word” I have addressed all the issues. But this blog is from the heart. So don’t lecture me until you have walked in my shoes. You will never be able to understand the positives the Dyslexic community brings to these kids or families

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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