In February I collaborated with the British Dyslexia Association to survey parents about the emotional or ‘Human Cost’ of dyslexia. The aim was to gain an understanding about how a child having dyslexia affected not only them but also their families in terms of anxiety, interactions with education, family dynamics and the actual monetary cost of having a child with dyslexia. This article is part one of four that reveals what you told us in the survey which was ultimately used to inform politicians at the All Party Parliamentary Group For Dyslexia on the 24th April 2019. Dr Helen Ross (who presented the data in Parliament) and myself will share with you our thoughts about what we discovered.
Why is this survey important?
I have to be honest with you. In my time as a parenting & neurodiversity coach (What you didn’t know that? Find out more, click here) supporting hundreds of families with my online content as well as my work providing one to one coaching sessions to adults and young people with dyslexia, I had come to a number of conclusions about the familial experience of supporting a child with dyslexia. When Helen Bowden, BDA CEO, suggested that we collaborated to try and ‘quantify’ the experiences amongst families, so that we could report that information to the APPG, we thought that we wouldn’t get a huge response! How wrong were we!
The survey covered four topics:
Parental Anxiety & Dyslexia
Parental Interactions With Education
Family Dynamics
Exploring The Cost Of A Child Having Dyslexia
The survey went viral, parents all over the UK shared the survey to other parents and we gained more than 1300 responses and collected more than 2500 supporting comments from parents.
It was clear that you really wanted to get a message to MP’s in Parliament and we took that data and we gave an overview via Helen’s presentation and the resultant APPG Report which was sent to all MPs. You can get a copy of that report by clicking here.
In this article, I am going to show you the results of the yes/no questions that you answered on the topic of Parental Anxiety and Dyslexia and I will do the same for the other topics in subsequent articles. With those results Helen Ross and myself will make comments from an educational perspective (Helen) and from a parental perspective (John).
Read on to find out what you reported about your experiences with Parental Anxiety and Dyslexia.
What Parents Think: Parental Anxiety & Dyslexia
Parents responses regarding parental anxiety and dyslexia in the The Human Cost of Dyslexia Survey February 2019.
Dr Helen Ross
Helen writes:
Parents’ struggles and the stories they told through the survey ‘The Human Cost of Dyslexia’ are heart-breaking. Parents feeling that the only pathway for ‘success’ for a child is through a narrow, mainly academic pathway is discouraging. A parent stating, “I’m told she will be alright once she’s made it through school,” is a significant indictment of a broken system. No child should have to ‘make it’ through school. School should be a place where young people can thrive, no matter their profile. Parental anxiety around a system that values traditional academic achievement and judges schools and learners by absolute, quantitative results alone seems to be to be an incredibly flawed system. Young people, particularly those with SEN often do not make the linear progress currently expected within our current system. This is then highlighted by school data trails by and ‘for’ teachers who then pass this onto parents to try to create a sense of urgency around progress and attainment. Sometimes this is helpful. Otherwise it can be soul-destroying for parents, teachers and students alike. I wish I were surprised that parents were anxious because of their children’s dyslexia and needs within this current system. Unfortunately, I am not.
John Hicks
John writes:
I am sure that most parents dream that their child will unlock their potential and live an exciting and fulfilling life. I know that as a parent of children with special educational needs myself, I found that I relied upon the experiences and attainment of my children within education to inform me about that ‘unlocking process’. How could I not? From the age of 4 through to 18 or perhaps 21, education is a major part of our children’s lives. They learn their social skills at school, their eyes are opened to lots of fantastic subjects through which they can learn about the world and, importantly, themselves and how they relate to the world. But with that process, come judgement. Our children are subjected to rigorous assessment in an education system that focuses on test performance or being able to regurgitate facts and figures in ways that, if dyslexic, are not an appropriate measure of their capabilities. With those assessments, comes results that inform a perhaps distorted view of the potential of the child.
So if a child with dyslexia is struggling with attainment at school, the results reflect that and parents cannot help to be anxious about how their children stack up again the education’s ‘measuring stick’ and what that may mean for their future. In the survey 95% of the participants indicated that they were worried about what the future holds for their children and I am saddened to see that 95% said that the felt that they lacked the skills and knowledge to support their child’s dyslexia. So we see a situation for many, where school results reflect poor attainment and parents feel helpless. Clearly there is not enough good quality information out there to help parents make informed decisions about how to support their children through education and onto their future lives. Heightened levels of anxiety can then effect relationships within the family as well as with the school.
As I have learned more about dyslexia, yes, I see the challenges in education with literacy, focus, concentration, processing, memory and many more, but I also see the opportunities that seem to be more prevalent for dyslexic kids. They are often more resilient, have a better grasp of what they want out of life and how they interact with others, they are passionate about ideas, fixing problems, being strategic and often extraordinarily creative but during their child’s educational development, the focus on the challenges seems to dim the light of the opportunities and in the survey 76% of the participants expressed that sometimes they wished they could ‘fix’ their child’s dyslexia. This says a lot about a parents sense of perspective on dyslexia and how people such as myself, the British Dyslexia Association and many other leading organisations should constantly strive to reflect the good that comes with being dyslexic and provide information and inspiration about what can be done to help a dyslexic child through their educational years.
Personally, I would not ever wish for my daughter to not be dyslexic. She was fortunate in that she was diagnosed relatively early (aged 12) and that she was able to get support throughout education. She is currently in year two of a musical theatre degree and is passionate about acting, dancing and singing, she is focusing on her dyslexic strength of creativity. It give her a sense of purpose and motivation that got her through the tough times at school. The survey reflected that 85% of participants sometimes wished that their child was not dyslexic. It’s no surprise really when the education system doesn’t often recognise the strengths of a child if it can’t be measured in a test.
Other results showed that 80% of the participants worried about what other people might think about their dyslexic child with 64% feeling guilty that their child is dyslexic.
For me this shows how educational professionals should make it a priority to know more about dyslexia and how it impacts on the feelings of the child and their parents. A lot of parents are coming from a tough emotional place as they try to find support for their children.
