THE BLOG

How Other Parents Helped Me Realise A Learning Disability Is Nothing To Fear - In Fact, It's Brought Joy I Could Never Have Imagined

01/12/2016 16:29 | Updated 3 days ago
Getty Images

I'm a dad of three - my two sons, Harry and Joe, and their younger sister Rosie, who is five and just so happens to have a learning disability.

My wife Karen and I knew prenatally that Rosie would have Down's syndrome and the diagnosis marked the start of the long, wonderful journey our whole family continues to cherish. That's not to say things have been straightforward - I remember the emotions well when we were given Rosie's diagnosis; deep shock and anxiety, as well as a fear of the unknown.

When we were first given the diagnosis, I remember going through lots of outdated, clinical information we'd found online, but what I desperately wanted to know was how the day-to-day looked, raising a child with a learning disability. I wanted honest opinions from parents like me, and I wanted answers to all the questions going through my head: What if Rosie can't ever walk? What if I can't help her reach her full potential? What if she's bullied and picked on?

Some of my feelings which I have kept locked-up (until now) were not only irrational but completely selfish, even disturbing to me at times. Perhaps they say more about the person I was then, or perhaps (more likely) they are a perfectly normal part of the rationalising process the mind makes when trying to digest such life-changing news. Whatever the reasons, they were real and I really valued hearing from other parents who felt something similar.

In short, I wanted to know the things she would be able to do rather than a list of the things she might not, which is something I kept coming up against.

A recent survey of parents of children with a learning disability, from Mencap, showed that 39% of parents said other parents of children with a learning disability were the most valuable to them for emotional support, when their child was born.

This doesn't surprise me. Family and friends were extremely supportive when Rosie was born, but from experience, being able to speak to other parents and hearing their experiences and simply, words of encouragement and support, is invaluable. That's why I started my blog, 'The Future's Rosie'. I wanted to connect with other parents - particularly dads - who found themselves in a similar situation to my own.

Sadly, that same survey also revealed that some parents are still without this vital emotional support. Of the parents who said they received no emotional support when their child was born, 26% said other parents were the group they thought would have been most helpful in providing emotional support. That some parents are dealing with such life-changing news alone, and may be experiencing some of the same scary thoughts and emotions I did - fear, confusion and worry - is desperately sad.

Online tools such as Mencap's new online community are invaluable in connecting parents and family members of people with a learning disability, and enabling them to share their thoughts and worries, no matter how unsettling, uncomfortable or confusing they may be. It means someone is there to pick you up, offer advice and comfort, and share firsthand experiences, to show you, you are not alone.

When I think back now, I feel ashamed of the things that went through my head when Rosie received her diagnosis. My daughter is more special than I could ever have imagined. Becoming her dad is a life lesson that has enlightened me in such a positive way.

No matter how frightened, confused or worried parents of a child with a learning disability may be, I can guarantee they're not alone and these feelings are totally natural. At some point, the time will come where you see past the diagnosis and see the person - the beautiful, unique child that looks more like you as parents than someone else with Down's syndrome.

Over six years since her diagnosis, Rosie is in mainstream school, she's got lots of friends and the highs she has brought our family have far outweighed any of the lows. I still have fears for Rosie's future of course, but I have them with my sons as well. The 'what if' questions are still there but that's just part of being a parent.


Mencap's new online community FamilyHub provides peer-to-peer support for parents, family members and carers of people with a learning disability

Comments

CONVERSATIONS