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The Invisible Disability - Dyslexia

Our daughter is 8 years old, she was diagnosed as dyslexic, 1st percentile, last August. We had an idea her brother was diagnosed aged 12, he's now 22 years old. What we weren't prepared for was a stagnant education system that has failed to move forward and progress in the 10 years between our son's diagnosis and our daughters. Nothing has changed, nothing at all. Trying to access supports through the school and SENO (Special Needs Education Officer) is an impossible task. The school blames the Department of Education for the lack of progress the SENO keeps referring us back to the school and so the cycle continues. To date, we are waiting for 5 months for the correct supports to be put in place for our daughter to attend school. We have a path worn to the school, nothing changes. We've had our daughters learning support hours reduced she hasn't received consistent weekly learning support since she returned to school last September. Our daughter is ostracised in school. She can't access the course curriculum without the assistive technology she's been granted by The Dept of Education. The school has yet to purchase it and upload the school books in digital format as outlined in her diagnosis report.

At times I wish my daughter's disability was visible. If she was in a wheelchair the school would have to provide ramps so that she could attend school. If she had behavioral issues she'd get an SNA in class. Because my daughter's disability is invisible she is expected to attend school daily without the correct supports in place. Dyslexia robs children of time and ostracises them from their classmates. Not being able to access course content just like the other children in your class is demeaning, distressing and unconstitutional. The fact that any school would expect a child to show up under these circumstances is disturbing, to say the least.

In our case, Dyslexia has not only robbed us of time with our daughter in the evening (it takes hours to do homework) it also robs us financially. I've had to reduce my hours to part-time and we struggle to pay for private tutors, Assistive Technology, APPS and workshops to build self-esteem and help our daughter to understand why she is been given a worksheet in school while the other children in her class access the national curriculum. That's the hardest bit, being a parent and watching your child's self-esteem being ripped apart piece by piece, bit by bit, day by day. As a parent the sense of hopelessness, loneliness, sadness and sheer despair at your child being treated in this manner is akin to grief, suffering a huge loss. As you watch them lose their identity and struggle to fit into a world that's linear, everything has its place, except them. They don't fit in the classroom, they think visually, they specialize in mental or sensory imagery and are primarily picture thinkers. Their brain works differently and because of that, they get a worksheet to color or word search to do while the other members of their class carry on with their education with gusto and speed. Imagine for one second how that must feel to an 8-year-old little girl? Imagine the anxiety, the frustration, and fear.

It's paramount to any child's wellbeing, particularly a child with dyslexia that they are fully supported immediately in their education after diagnosis. Expecting a child to wait months for support fuels their anxiety, frustration and excels their fear. Fear of being different, fear of being bullied, fear of rejection, fear of being cast out and called stupid. Our daughter is not stupid. In fact at the time of testing her IQ was higher than the average 8-year-old. However, because her literacy and reading skills were so bad it reflected her IQ score. I want my daughter to reach her full potential but she will never do that while she stays in an environment and school that does not understand dyslexia and how important it is to be fully supported as a child with a learning disability. Dyslexia is an invisible disability which in turn makes the child invisible in the classroom. I can list famous people with dyslexia who have achieved great things in life and some exceptional influencers. Richard Branson, Whoopi Goldberg, Keira Knightley, Steven Speilberg, and Dr. Maggie Aderin-Pocock to name but a few and I'm sure just like her brother our daughter will make her mark too. But why make it so so difficult? The reason these people have succeeded is because of the obstacles they've had to overcome as children. Being dyslexic is tough, it takes longer to write instructions/text down, listening and writing down notes is difficult, organizational tasks are difficult, the isolation and low self-esteem are all-encompassing. Imagine that was your life, your reality every single day. Now imagine you are 8 years old and being forced into working in inappropriate ways (not dyslexic friendly) because that is the way the school system works.  It's exhausting, for children and parents alike. When friends and family visit and they ask how your feeling, you smile, but inside you are screaming! This is what hell looks like, every single day is a struggle.

Now imagine a world where design, problem-solving, creative skills, interactive skills, and oral skills are developed? That place is at home. We are now into the 3rd week of homeschooling our daughter because the education system has failed her. Her school has failed to teach her to read, write and basic maths. How is that even possible given she's shown up for school for the past 5 years? Home is a place where there is no anxiety, fear and where you are fully supported being dyslexic. Home is where you become a unicorn at least until the rest of the world recognizes your uniqueness, potential and is fully supportive.

I invite you to help my daughter receive the education she deserves, in doing so creating awareness about dyslexia. You can help by sharing this article with anyone you feel can help us fight this injustice. Stop these children becoming ostracized and invisible in the classroom. Help them to access consistent, structured supports based on their needs and within a timely manner so that they can reach their full potential. 

If a child can't learn the way we teach, then maybe we should teach the way they learn.

Thank you for reading and sharing. Share with politicians, influencers, school teachers and parents, share so that they know what it's like living with dyslexia and trying to access supports. Just don't be like the establishment and do nothing.

Useful Resources

Dyslexia Association of Ireland (DAI)

Educational Welfare Service Office Contacts

Home Education & Education Recognised Outside Schools

Space Scientist, Dr Maggie Aderin-Pocock - MBE

Update:

Tues 5th FEB, Hannah started school yesterday morning in St Josephs NS in Kilmuckridge, Co. Wexford. Our family home is in Tallaght, Dublin 24. Hannah has been refused entry into 10 local schools so far, we continue to source a place for Hannah. The Dept of Education and Tusla are aware of Hannah's predicament and we are hoping they will help and assist Hannah secure a place in a school locally. No child should have to leave their family home to attend school. Hannah has not only had to leave her home but leave her county. It's not just the healthcare system that's in crisis the education system is failing children like Hannah.

Update:

Tues 30th April, Hannah remains at St. Joseph N.S. We attended 2 Section 29 Appeals in the Department of Education at the beginning of April. We are awaiting the outcome and hopefully, Hannah will be offered a place locally for September 2019. We got zero help or assistance from Tusla, EWO or the NCSE. We have contacted the Children's Ombudsman with regards to the lack of help, support and assistance we have received from the organisations that are set up to help and assist children and families that need support. What is there purpose? In our case, they are not fit for purpose as they did nothing to help Hannah. Hannah continues to commute 114 KM's to school. We don't live in a 3rd world country so why is a 9-year-old little girl expected to make this journey to school for education? Why is a 9-year-old little girl with a learning disability receiving no help, assistance or support from Tusla, Education Welfare Officer or the NCSE? Our politicians know about Hannah, the Minister for Education Joe McHugh is aware of Hannah and our situation and yet they do nothing. When the councillors knock on your door canvassing looking for your vote for the local elections on 24th May ask them what they are doing to help Hannah. Ask them to help this little girl reunite with her family, friends and social clubs. Ask them why there are not enough places in Reading Schools for children like Hannah. Ask them why is the funding not available for these children to receive an education on an equal basis. Ask them why are they not being afforded the opportunity to participate in education on an equal par as their peers? Ask them what they propose to do about invisible children in our education system, invisible children just like Hannah.


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