This is article three of four sharing the data gained from a collaboration 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 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.
The survey covered four topics:
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 “Family Dynamics” 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 dyslexia and Family Dynamics.
What Parents Think: Family Dynamics.
Helen writes:
Parental guilt and feeling like they’re being pulled in too many directions cannot be an easy thing to navigate. The data show such difficult dynamics taking place in homes across the UK. That parents feel they are neglecting siblings, are concerned about what other family members feel or have experienced negative reactions to their children’s dyslexia is devastating. The one place that I would hope a young person would be able to be themselves is within their family, and where parents feel able to share their own difficulties with wider family. I feel for parents where family members are, “not particularly supportive with the route [they] took to get the right education” for their children.
One of the benefits I currently have through self-employment is that I am freer to make some recommendations to parents or to suggest non-traditional pathways to them so that their children can flourish. However, this shouldn’t be necessary. Families need support to understand the strengths dyslexia can bring and how to support it using technology, alternative methods to reduce emotional/academic burdens at home. We should allow for differences in our expectations as part of a more accepting, diverse education system.
John writes:
Let’s face it! Parenting is hard work. As parents we don’t get an instruction manual on how to bring up our kids and often with families with more than one child, the parent will spend a lot of time being referee between siblings intent on winding each other up or competing for your attention. We of course do our best to be as fair and as supportive as possible, but often it can feel like a thankless task! Added to that challenge is managing what a child having dyslexia means to the family.
In the Human Cost of Dyslexia Survey, your feedback on Family Dynamics told us that you sometimes feel guilty that your dyslexic child gains more attention than their siblings. So often the emotional burden that comes with having dyslexia is enormous for a child. They may well need a higher level of encouragement or affirmation than their siblings. Their emotional needs could well be greater in comparison. We know this, but we still feel guilty, of course we do. What makes this harder is that 74% of the responses indicated that parents feel exhausted by dealing with their child’s dyslexia and it maybe that as parents in that exhaustion we may struggle with the balance of giving out attention between siblings. When exhausted we can sometimes lose sight of the bigger family picture and maybe we feel like we are in a situation that we are struggling to control for the best of everyone in the family. This explains why 76% of participants reported that they sometimes lose patience with their dyslexic child. It seems to me that as parents we absolutely need to look after ourselves so that we are in the best frame of mind to not only meet the needs of our dyslexic kids but also their siblings too, however, the added stress that comes from challenges presented by our education system in supporting dyslexic learning will be exacerbating the emotional burden for the dyslexic child and thus putting pressure on the family.
Your responses also show that sometimes as parents we do spend more on our dyslexic children compared to that of the other children in the family unit. This could be spending on tutoring or nurturing hobbies and interests as well as many other reasons. This is another area of potential stress within the family as siblings may perceive that spend in a way unintended by the parent.
The data collected in the survey about family dynamics further compels me to stress how important that parents and teachers work together positively to support a child in the school as well as in the home. We do have a flawed education system which makes it imperative that all supporters of dyslexic children do their utmost to positively work together.