There’s no denying that having a child with a difference or a disability, be it physical, emotional or social, comes with its own set of unique challenges and trials. What’s more, the difficulties that your family experiences may be wildly different to those faced by the next family to share your child’s diagnosis.
There was a time before my daughter was born without her right hand when all I could see ahead of her was a world full of “you can’t do that”, “that’s not possible” and “why don’t you try doing this instead?”. In short, I saw a world full of walls and impossibilities and my heart ached for her and for all I feared she wouldn’t be able to do.
My reaction was strong, coming from my inherently two-handed perspective. After all (and there really is no two ways about it) our world is designed to be navigated by two able hands: From the hand towel dispensers in public bathrooms that instruct you to pull with ‘both hands’ to tying shoelaces or even just using a knife and fork.
Fast-forward two years and instead of mourning the opportunities I thought my unborn child had lost, the world looks totally different. The view I see now is one of possibilities. I see a world of “of course!”, “why not?” and “go for it!”. Now I see a future where there is no doubt that she will be able to do whatever she sets her mind to.
Over the last two years, while I would never deny the hard and sometimes painful moments, I have been bombarded with unexpected positives and blessings that my daughter’s difference has brought into our lives. From the small and seemingly insignificant boons to vast and life-changing benefits that have impacted upon our entire family.
I’ve found this blog post uncharacteristically challenging to write; always in the back of my mind is the fact that, when I was pregnant, I would have found this positive outlook quite difficult to accept. At that time I needed to be told that it was ok to feel down and worried, that it was ok to fear the future. I think it’s essential to acknowledge those thoughts, feelings, and emotions. It’s a fact of life that people will always try to make you feel better, and sometimes that comes in the form of platitudes and well-meaning comments. But when it’s you in the thick of it, sometimes these can serve to invalidate your thoughts and feelings.
In writing this post I wanted to celebrate the wonderful things that have come from my daughter’s difference without, I hope, implying that we’re somehow in an enviable situation or that feeling upset or worried is invalid.
A ready-made family
One of the biggest and most long-standing positives of having a child with a difference actually emerged for us during our darkest time, before our daughter was even born. It was being welcomed into the vast, and yet tight-knit community of limb-difference families.
We found the UK-based ‘Reach’ and the USA-based ‘Lucky Fin Project’, for families affected by limb difference, halfway into our pregnancy. The month before she was born we were going to our first Reach family get together. There we met families who we’d never have crossed paths with otherwise. We’re lucky enough to now call those families close friends and will likely remain so for life.
“The community is brilliant, there is an unspoken acceptance and understanding between parents and kids,” one parent explained before adding that her son has made wonderful friends from all over the country as a result of his difference.
Through that community, we have found understanding and guidance from families who’d been through it all before. There are numerous times when you try to explain an emotional reaction you’ve had to a friend, and if they don’t have a child with a difference like yours’ then they often simply aren’t able to understand. Tell the same thing to a parent in your child’s community, and no matter how trivial your worry or how random your emotions might seem to others, they just get it.
“We have met so many amazing children and parents within the community who have become a second family to us. They are always the people I go to first for advice - they just ‘get’ it,” another mum added.
Finding ourselves a part of a ready-made family – that spreads right around the world and gave us so much support in our daughter’s early years - was something I wish everyone could experience. How much easier would parenthood be if we were all given a ready-made team or family who just ‘got’ things the way we did?
It’s not uncommon to hear stories of rude or inappropriate reactions to a physical or social difference from families who’re out and about in public. The sad fact is that, for many of the general public, differences and disabilities are simply not something they come across in their day-to-day lives.
Increased representation and exposure of disabilities and differences in mainstream media are key in improving things. In the meantime, however, having a child of your own with a difference can certainly give you an edge when it comes to dealing with difficult situations or meeting people with differences you’re just not used to.
“I feel able to talk to other parents of children with special needs in their different forms more easily than I would have done before,” one mum explained. “It's opened my eyes enormously to the idea that it’s a person’s abilities and not their not disabilities that really count.”
Since going through our own diagnosis during pregnancy I definitely feel a lot more confident in knowing, not so much what to say, but in knowing for certain what not to say. I know what well-meaning platitudes actually caused pain and upset to me, despite their good intentions. My strongest memory being when an acquaintance smiled and said, presumably with the intention of making us feel better, “well, at least it’s just a hand!”.
“At the library, my daughter asked why a girl was in a wheelchair so I suggested that we ask her mum. We ended up chatting to the girl and bringing her books. I'm not sure this is how I would have approached it before having my daughter,” another mum said. “I probably would have done more of the, "ssshh that's rude!" approach before.”
And what works for us as parents and family members is certainly true of our children as well. My daughter is too young to even notice disabilities or differences, let alone to empathize with them, but parents from the disabled community have reported a huge sense of affinity, graciousness, and understanding in their children.
“I may be wrong, but I think children find it easier to accept and talk about disabilities and differences because of the conversations they've had as a result of their own,” another parent added.
“My kids are definitely more aware of difference. They are totally aware of people being able to do things in other ways.”
Amazing milestones and natural-born problem solvers
Milestones are exciting. No matter what kind of a parent you are and no matter your child’s ability or disability. When you see them succeed at something that they couldn’t do before, or have worked hard to achieve, it’s a heart-bursting moment.
When your child is at a disadvantage to their peers, no matter in what way, it can mean that the reaching of those milestones is even more potent or exciting. When you’ve watched your child struggle for weeks, months, maybe even years, to tie their shoes or to crawl, there’s a fierce pride that only other parents of differently-abled kids will understand. Even more so when it’s a milestone you thought, in your darkest moments, they might never achieve.
“There is a huge pride in watching my boy tackle obstacles head-on and finding his own way of doing things. The latest one was batting in cricket; he’s found his own way of doing it and has been put forward for trials with his team!” a mum proudly told us.
These milestones and successes come as a result of a huge amount of hard work on the part of our kids. They are, by necessity, natural born problem-solvers and we find that this adversity often comes hand in hand with resilience and a tenacity that other kids might not develop as naturally.
No one wants for their child to have to work harder at something or to struggle to achieve something that comes easily to others. But there is no denying the wonderful personality traits these challenges can instill in our children, setting them up for a lifetime of tackling challenges head-on and knowing that they will find a way to get it done.
“The determination that my daughter has is inbuilt into our amazing children, they become determined to prove they can do things in their own way and are relentless until they succeed.”
When we found out about our daughter’s limb difference we wasted a lot of time worrying about what opportunities she had lost. She might not ever join the armed forces (some might consider that a positive in itself!) but I now find it difficult to think of many things she won’t be able to do. She might need an adaptation here or there to make things easier, or more productive, but there is no ‘can’t’.
As she grows we are finding more and more that opportunities will present themselves to her as a direct result of her difference. There are activity days, arranged through the UK’s national limb difference charity, Reach, giving her the opportunity to try tall ship sailing, rock climbing or a myriad of other sports. There will be sporting opportunities, through the Paralympics, that might enable her to compete at a level she may never have had access to as an able-bodied person.
“My daughter has had such a wide variety of experiences at the age of 10 that many able-bodied children haven’t,” a parent of a young Para swimmer said. “The Para-swimming has opened up so many doors for her and will continue to do so!”
Re-evaluating your own ‘I cant’
“I can’t do that I’ve only got one hand,” I used to say as I held my newborn daughter in one arm and tried to open a bottle of water with the other. This phrase was something my husband always took particular umbrage to. Understandably.
When, earlier this year, I fell down a bank and badly broke my arm the phrase started rearing its head again. I was in a cast up to the elbow and in a lot of pain. On my first day home alone with my daughter, I needed to tie back her unruly hair before lunch and I told myself that it couldn’t be done. But then I remembered some videos I’d seen of kids without arms putting up their own hair.
It’s difficult, nigh on impossible, to be part of the disabled community and to witness the methods, strategies, and effort that go into making sure that they can do something, and to still feel it’s ok to bottle out yourself. So get on with it I did. I watched a couple of videos and with one hand, and my teeth, we got my daughter’s hair into something resembling a ponytail. It may not have been catwalk-worthy but it was at least up and what’s more, I had done it myself.
“Seeing my daughter overcome hurdles and knowing that she’s achieving things despite the odds and the disadvantages means that I’m now a lot more reluctant to say that things are genuinely unobtainable. If something isn’t happening for me it’s because I’m choosing not to commit the time to achieve it. It’s not because of a lack of ability; it’s simply a conscious lack of application and commitment. There really is no such thing as ‘can’t’,” one determined dad explained.
Raising a child with a disability or difference isn’t always a walk in the park. You might see darker days than your other parenting peers and your worries might be deeper and your fears stronger. But it’s important to celebrate the positives that we have as a direct result of our wonderful, capable, talented and tenacious young people!
What unexpected blessings have you experienced as a result of your child’s difference or disability? Why not share your experiences in the comments below!