Levelling up our limb-difference comfort zone

Levelling up our limb-difference comfort zone

Without even realising it, we’ve been quite happily ticking along in a comfortable little bubble where Hero’s limb difference is concerned. Actually, that’s not entirely true, I’ve written before about how I felt we were in the golden years of her childhood where her difference is concerned; about how she’s too young to even know she’s different. And yet it’s amazing how quickly you can start taking that comfort for granted and accept it as the norm.

Yet it’s often the moment that your happy boundaries are pushed and tested just a little that you become aware of your comfort zone at all. It’s the breaking, the growing and the adapting of those edges that make you appreciate their existence most.

I feel like we had a bit of a limb-difference level up a few weeks ago. If I’d written about the experience back then, all of a month ago, it would have been a very different post indeed. It would have been a lot more emotionally fraught, it would possibly have been a bit tearful. But times have already changed, and what once took me weeks, months or maybe even years to acclimatise to, now takes mere hours or days.

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The golden years

For the last year or so we’ve been blissfully unaffected by Hero’s difference. Aside from a few minor stares or comments we’ve had no negativity. She took to RugbyTots like a nerd takes to Comic Con. She might drop the ball a little more often than the others, but aside from that you would have absolutely no idea that she was at any kind of disadvantage, and it’s been that way since the very start. So there we were, Hero thriving at nursery, excelling at RugbyTots and just all-round smashing it at life.

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Then gymnastics happened.

I skipped along to toddler gymnastics way more excited than Hero, as always with these new enterprises of mine. I had added a note onto the paper work mentioning her hand, with the vague feeling that it might be useful for insurance purposes. I mentioned it briefly to the receptionist too, I always like to make new class leaders aware so we can avoid that awkward “oh!” moment when someone tries to help her with a task and realises. But when we arrived for our first session, it didn’t occur to me to say anything else.

We took our seats in the circle and took the two little wooden sticks we were offered as part of the warm up. To start off the toddlers had to tap the sticks together. No problem; Hero just clamped one of the sticks against her body with her little hand and tapped the other one against it. Check!

Then they had to roll one of the sticks along their outstretched legs. A little trickier, but still, after a bit of readjustment; no problem. No warning bells.

But then they were asked to stretch up high and tap the sticks together above their heads. The kids all leapt to their feet and duly obliged. Hero also leapt up, attentive as usual, and then just frowned a bit as she watched everyone around her doing a task that she just couldn’t adapt for this time. She brushed it off but next they were asked to tap the sticks together behind their backs and my heart dropped a peg or two. There was a little warning bell ringing in my head now.

Seeing her just stand there and watch her peers, wanting to join in and not really registering why she couldn’t was tough. I even had a moment of anger, one I’ve not had since the early days. “Really? Above their head? You get that she only has one hand right?!” I don’t expect the world to adapt to her difference, as rare as it is, but there are moments every now and again where I feel a little more inclusivity wouldn’t go a miss. After you noticed the kid that couldn’t tap them above her head, could you not have skipped the behind your back bit? But it was our first time and I suspect there was a little bit of sensitivity coming out in me, I’m not used to seeing her struggle after all.

 

Your hands don’t fit here

The warm up ended. I beamed and smiled and, as she returned the sticks back to the box, we brushed ourselves off as we skipped off to our activity. When we got there the first thing we were confronted with was two hand prints, set in contrast against the bench, showing the kids where to place their hands whilst practicing this particular move. Now I’m absolutely not complaining, but it did come a little hot on the heels of the Stick-gate Scandal and my heart lost another rung on the ladder.  Look Hero, your hands don’t fit here. I buried the feelings again, as I’m pretty expert at doing (and I know I’m not alone in that) we were really enjoying ourselves despite these little stings along the way.

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Next up was the parallel bars, at toddler height, where the kids were asked to hold onto each bar and lift their feet from the ground. I wasn’t sure how Hero was going to go about it, but I didn’t doubt that she would. As we approached, however, the helper waved a hand dismissively and told us that Hero could “just walk across instead”.

There wasn’t time to reply as we were swept along in the line but inside I felt a bit tumultuous. I was angry at her dismissal, I was frustrated at the immediate suggestion that an activity should just be avoided rather than tackled and of course, the edges of my comfort zone were wobbling dangerously in the breeze. This could have been one of those hypervigilance moments from me; she could have simply meant it because she knew it was Hero’s first session. Maybe. Perhaps. But either way, the result was the same and I have to confess to feeling a little disappointed that Hero didn’t even want to try that activity. I’d wanted so bad to prove that lady’s doubts null and void! Maybe next time!

 

Shaking the boundaries

It might not sound like it, but we actually had a wonderful time at gymnastics, despite the blips, and we’ve definitely been back since. We both had our comfort zones irrevocably shaken. Her’s physically, as she tried to master using her body in ways she’d never done before, and me emotionally as I watched her do just that. As I watched her come up against the very first thing in her life that she simply couldn’t do because of her hand. There was no working around it, no finding another way; she wasn’t about to tap those sticks above her head.

Having your comfort zone shaken, while painful at the time, is not really a bad thing. Instead your boundaries settle back into place, only this time they’re wider and you’re comfortable with just a little bit more than you were before. So when we went back the next week the handprints on the floor didn’t upset me. Mercifully, there weren’t any tapping sticks in the warm up either. Annoying really, as I had an EazyHold cuff in my pocket ready!

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When we started the warm up at the latest session she needed two hands again. Only this time they were using a rope. No problem, we simply folded the rope and hooked the loop over her little hand and held the other two ends in her left. She too could hold it high above her head this time, just like the others. Boom!

So here we are. Three sessions later and we’re pretty cool again. That didn’t take long, did it? I remember a time, when I was pregnant with Hero, when she was a little baby, when the mere sound of “if you’re happy and you know it clap your hands” would make my heart shrivel up for days on end. There was a time when I could feel sensitive about something someone said for weeks, maybe I’d even carry it around for months.

We found that first gym session tough. But we bounced back, we levelled up as a limb-difference family and we learnt that we could cope with a little more than we had before. We came marching back in and now we look for the next challenge. We puzzle out how we’ll overcome it before we get there. We watch how each activity should be done, and we have a rapid power think so that I can offer a strategy for Hero to try if, and only if, she needs it.

They had to hang onto the bar with both hands today and walk their feet up a wall. We gave our shoulders a shake, preparing for the fight, and in we dived. Hook an elbow over the bar and off we go.

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Three weeks ago we were knocked for six a little bit, for the first time in a long time. Three weeks ago is so last season! Three weeks ago we were sheltered in our wonderful world where Hero didn’t find anything particularly hard. Today we know that we can problem solve on the spot. We know that there are things out there that she will struggle with and some things that she simply won’t be able to do. But we also know that we – and she – will be ok. We know that we’ll work hard to brush those moments off and to throw ourselves into the next task without losing heart and without losing our confidence. We got this, she and I; roll on next term’s challenges.

 

 

 

 

Fit for purpose: An amateur’s step-by-step guide to making an adapted lucky fin glove

Fit for purpose: An amateur’s step-by-step guide to making an adapted lucky fin glove

I should start this guide with a little disclaimer: I am not a seamstress of any sort. I’m an enthusiastic amateur who loves a bit of crafting with a purpose.

I love seeing my daughter get stuck in with anything and everything. She loves helping out in the garden and has been struggling to help us carry cuttings and rough objects around the garden with a pair of gardening gloves on. It’s one of the few times we see her get frustrated as the right glove repeatedly falls off of her little hand. She eventually throws the gloves on the ground and declares sadly that she “can’t do it”. The thing is, she absolutely can do it! Give her the right tools and equipment and she can do whatever she sets her mind to.

I’ve always believed that she should have clothes that fit her arm, and not have to feel like she’s trying to fit into a mould that she simply wasn’t made in. When she was small I used to adapt all of her baby grows and she’s incredibly lucky to have jumpers, gloves and cardigans knitted bespoke for her by Grandma and Great Granny!

I couldn’t find a suitable ‘how to’ online and, let’s face it, needing to chop all the fingers off a glove and make it half the size is not something that most people will have need of doing in the course of their lives! So I decided to take some pictures as a went along, with the view that it might be helpful for someone else if it worked and that no one need ever know if it went horribly wrong! 🤫

Happily, it was a success! It only took around 20-30 minutes (which was a shame as I was enjoying myself) and I only needed very basic tools (and skills!).

 

1. Find your tools

All I needed was a pair of gloves, tape measure, scissors, a stitch-picker, pins, a needle and some thread. Simples!

Luckily for me, had my experiment in crafting gone wrong I wouldn’t have been out of pocket too much as I found these kids gloves in the bargain bin at my local hardware store for 75p. With hindsight I should have gotten a few pairs!

I’ve had no luck finding decent baby/toddler gardening gloves, so these ones are still pretty huge on her, but at least she’ll grow into them. In the meantime, glove companies are missing a trick not making gloves small enough for the littlest people! I don’t know many toddlers that don’t love hanging out and helping out in the garden!

 

2.  Remove the fingers from the glove

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3. Unpick the seams

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Turn the glove inside out.  Cut through the cuff, unpick the seams around the hand of the glove and lay it flat.

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4. Cut to the right shape and size

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This is where your approach and mine might differ somewhat! I am not a perfectionist. I am a ‘that-looks-about-rightist’! I did measure my daughter’s little hand to start with, but I have to admit I didn’t do a lot with that information other than use it as a guideline.

I cut about 3cm off the cuff and then cut the hand of the glove into a tapered shape, removing the thumb of the glove at the same time. With hindsight, I should have made the angle on either side a little more even at this stage as the finished article is a little wonky. But it works, and hey, they’re for nothing more glamorous than digging in the mud and mess after all!

 

5. Pin in place and sew

I used a basic running stitch to sew the restyled glove back up. I kept the hem narrow to avoid it rubbing on her little hand and then doubled back along the stitching to make sure it was extra secure, as it’s going to be put through some fairly heavy use.

 

6. Turn the right way out and voila!

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Somebody was incredibly happy to try on her new gloves and to discover that they actually fit! Now all we need is a bit of warmer weather so we can get outside and test them out!

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What does awareness matter anyway?

What does awareness matter anyway?

We use the hashtag #limbdifferenceawareness a lot. We share Hero’s successes and hurdles so openly in the hopes of giving a little reassurance and solidarity to others like us and also to raise awareness for those less like us.

But why? Even I have asked myself why raising awareness – of any difference or minority – is so important.

Symbrachydactyly, the condition that caused Hero to be born with only one hand, occurs in around 1 birth out of 32,000.

If limb differences are so rare, why on earth do the other 31,999 two-handed and ten-fingered babies need to know about it? It’s entirely possible that they will go through life without ever coming across someone with a congenital limb difference after all.

“Oh my god! That kid’s only got one hand!”

Today in the soft play Hero was passed by two young girls, around about seven and nine years old.

Oh my god!” The youngest shouted, causing the other kids near by to look round. “That kid’s only got one hand!”

I tensed. My hackles go up in these situations and I start frantically trying to remember all the brilliant one-liners I had inevitably come up with long after these kind of situations have been and gone. I wasn’t at all angry, it was sheer curiosity. Sure, the girl could have been a bit politer about it, but she’s only seven after all and clearly Hero’s hand – or lack thereof – was a big “wow” moment for her. Despite not being mad, I’m always wary and I do find these occasions difficult, more so because Hero is very shy around her peers and doesn’t like to ever be the centre of their attention. She’s not old enough to understand their curiosity yet, but I really don’t look forward to the day when she is.

The older girl stopped and turned to look at Hero, who was hovering warily by the entrance to the tunnel.

She’s only got five fingers!” The youngest girl continued, pointing.

Oh yeah,” the oldest said, with a supreme lack of surprise or any real interest. “One of my friends only has three fingers on her hand.”

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Heart to heart and hand to hand

And there it was; over. She passed by on her merry way and the youngest girl followed, asking about the three-fingered friend without so much as a backward glance at the kid who’d caused her to stop short a mere moment ago.

The older girl’s cool and calm response, her awareness that not everyone comes from the exact same mould, led to a complete lack of shock or fear and diffused the younger girl’s reaction immediately. It allowed Hero to carry on with her day unbothered by their stares or questions.

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That girl’s comfort in the face of an unusual difference, her complete lack of fear, is why limb difference awareness, and awareness of any differences, is essential. That there is why all babies need to grow up knowing, not just about limb differences, but about anything that might single someone out.

They don’t need to know how. They don’t need to know why – heck, most of us don’t even know why! But they do need to know that it exists. And that it’s totally, completely ok.

The Limb Difference Battle Cry

The Limb Difference Battle Cry

There’s been something of a battle cry raised amongst the limb different community this week. In the wake of a particularly rubbish week for discrimination against people with limb differences many have been raising their voices in a wave of solidarity.

The interesting thing is, while some of the comments our limb different compatriots have received have been pretty appalling, the response has overwhelmingly been one of empowerment and positivity. There’s been a healthy dose of anger, but it’s been channelled into uplifting those around, into raising awareness rather than into resentment and bitterness.

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Check out our buddy Alexis at Stump Kitchen, beautiful inside and out! https://www.facebook.com/stumpkitchen/

It’s not always easy to be the better person. Taking the high road isn’t always simple and sometimes we might want to rage and hurl abuse at those rude enough to share their ignorant and misguided opinions.  And yet that’s the best thing about this fierce and passionate community of limb difference advocates; it’s never about the hatred. They might be handed incredible negativity, but it’s transformed and directed back out into the world as pure, punching positivity.

It’s been a week of mixed feelings as a parent of a limb different little one. I’ve cried as if these insults have been directed at me or mine, and in truth, they have been. In reality, a comment against one person with a difference is a comment against them all and the team has responded accordingly.

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Mother of two-year-old girl born with half an arm told to ‘cover it up’ – DailyMail

Reading all of these posts from such thoughtful, talented and inspiring people at first filled me with a dread I’d not thought about in a while. Over the last three years on our limb difference journey, my biggest fear has gone from all the things I thought she wouldn’t be able to do (if I’ve learnt anything at all, it’s that there’s nothing she won’t be able to do if she sets her mind to it) to fearing the reactions of other people. It hurts like hell when someone passes an insanely insensitive comment about your perfect baby with a difference, it hurts when people stare or, worse, when they point or mock.

But I’m not sure anything will prepare me for the day when someone says something to my daughter’s face, or behind her back, and she understands their intent. I’m not sure I’ll ever be ready to see her face crumple with doubt and hurt. To us, to her family and her friends, she’s perfect. She’s the way she’s supposed to be. She’s talented, she’s tenacious and she’s strong. We tell her this every single day and I can only hope she sees the truth in it and radiates that sense of self-assurance and inner beauty throughout her life.

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If you’re different and you know it, do a dance!

And yet I fear that a single badly judged comment, a single jibe or stare could unpick all of that self-belief. It could tug on a loose thread of doubt and unravel the whole thing. And if that happens, when that happens, when the words of her parents are no longer enough to fill her world, then there’s a whole army out there ready to pick her up again.

There’s an entire community of adults and children alike who are putting themselves out there, who are shouting the loudest, that they – and she – are perfect just the way they are. They’re standing up in the face of the judgements, refusing to hide away and they’re singing from the rooftops that they are capable, beautiful and unencumbered.

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No hand? No worries!

There was a time, not so long ago, when to be different meant you were alone. There are people alive today, some not even as old as me, who once felt like they were the only one. Social media might get a bad rap, but to those with any kind of difference it’s quite possibly the single most powerful tool for building confidence and self esteem in our young people.

The very fact that people like Stump Kitchen, Abshow, Brian the one-handed drummer , The One Arm Wondermom and countless more (I won’t list them all for fear of missing someone out) are brave enough to publish their stories, their successes and their challenges is changing the lives of those who follow in their footsteps. Thanks to them our children will never know what it’s like to feel like she’s the only one. Thanks to them she has behind her the most incredibly loyal and empowering team of cheerleaders. She’s got mentors, teachers, guides and role models surrounding her as she grows.

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When you’ve got powerful friends behind you…

In the glare of these bright lights I hope the naysayers and the hurtful ones are slinking away to hide themselves for a while. I hope they’re thinking about what they said, I hope they are realising that these powerful posts are aimed at them. I hope they’re considering that maybe they were wrong to give voice to their thoughts; I hope they come to learn that good intentions alone don’t negate their hurtful actions.

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We’re looking at you, haters!

There’s been something of a battle cry raised amongst the limb different community this week. The catalyst for the outcry has been painful to read for parents everywhere and yet those ignorant people, the ones who sought to hide or shame our children’s differences, have spectacularly failed. They’ve caused parents, limb different adults and lucky fin children all around the world to shout out louder than ever. They’ve caused a wave of images of celebration, lucky fins held high and taking centre stage.

I hope that one day in the future my daughter is proud enough to shout just as loud. I hope that one day her voice, and her perfect difference, joins the very battle cry that’s already changing lives.

 

Toys: harbingers of a new phase

Toys: harbingers of a new phase

I can’t help but feel that we’re entering into a new stage when it comes to Hero’s limb difference, partly for the better and partly, I think, for the worse – at least for a little while. For the last two and a half years her difference has hardly been noticeable. Except for the odd blip when someone’s said or done the wrong thing, we’ve hardly had any issues at all.  Certainly all of the worries and fears I nursed when I was pregnant and when she was tiny haven’t come to fruition.

But times are changing now; she’s almost two and a half and she’s starting to get a lot more dextrous and coordinated. She’s attempting things in a way she just wasn’t old enough to try before and is beginning to enjoy toys and games that are trickier to navigate with just one hand.


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Juggling the baby

To celebrate the arrival of her new sister Hero was given a couple of dolls and some accessories for them, along with her new babies has come many more requests for help.  Suddenly she’s coming to me a lot more than she used to. Help dressing and undressing her baby, help changing her baby’s nappy and help opening and closing the zip on her bag. Granted, most of these things any kid would need support with as they’re just starting out, but we’re definitely noticing the extra complication that having no right hand brings.

When she’s trying to fasten or unfasten the zip on her baby’s bag, she hasn’t yet figured out how to pin the other end with her little hand in order to give her enough tension to pull the zip across. So while she wants to carry the bag around on her pram, like Mummy does, it is currently inaccessible to her without help. She’s also struggling with baby’s nappy. She can’t yet wrap the nappy around baby with only one hand to grip with, and when she pulls the little fastenings across, the nappy comes with it and she has to start all over again.

As she gets older she’ll figure out ways of doing all of these things, but right now she’s just starting out and her little hand is becoming more of a challenge than it’s been for her before. She now has outbursts from time to time, always short lived, of sheer frustration as her fledgling independence is thwarted.

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D’oh!

 

One-sided conversations

I was watching her play with her dolls’ house this morning, ensconced entirely in her own wonderful world. It was a rare chance to just sit and observe, as usually I’m roped in to play as well. The traditional format is that I have one of the dolls and she has the other and we pretend they’re talking as we hold the little people up to look at one another.

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Playing on her own, however, conversations between her dolls suddenly became a little trickier to orchestrate. I watched her try to figure out how she could move them both at the same time, her little hand kept knocking the second doll over. Eventually, she gave up and laid one figure down on the floor and held up the other one like a floating spirit looking down on them while they ‘chatted’. She didn’t notice anything was amiss and carried on with her game as happy as Larry. Behind her, though, my heart was aching in a familiar way.

 

Horse riding hurdles

Then there was the other mini wobble we had, the worse bit of which was that this one was entirely my fault. Hero and I had been playing with some figures and, without thinking, I showed her how she could hold one of the people on the back of the toy horse and pretend it was riding. She loved the idea and went to do the same only to discover that for her it was impossible. With her little hand she couldn’t hold the figure up and move the horse at the same time. She quickly got frustrated, a little upset and the horse was relegated unceremoniously to the floor.

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These horses are bigger than the ones we were playing with in the incident above. She can fit her little hand underneath these ones and move them while holding the amazing horse riding crocodile on its back! Success!

It was a brief moment, all but forgotten by her within seconds, but I felt dreadful. With a new baby in the mix I’m a little short on sleep and I think I’ve been less in tune than I normally would be, but to actively suggest something she can’t physically do seemed more than a little harsh and it’s played on my mind ever since.  Perhaps as much because it heralds a whole new phase of experiences and frustrations coming our way as because it had been caused by me.

As Hero gets older and learns more about what her body can do she’ll find ways of making things like this work. However, before we get to that happy place I think we’re going to go through a period of trial and occasional frustration, at least for a little while. She’s of an age where she’s ready for the next challenge, but hasn’t quite got the problem solving skills to work out different methods if she can’t emulate the techniques used by her two-handed peers. After all, as her goals get bigger and more ambitious, it will inevitably become more challenging for her to achieve them.

 

Exciting times ahead

While I’m a little apprehensive about this new phase I also know that the whole thing will have more impact on my emotions than it will be on hers, and I take heart from that! I doubt she’ll even remember these little trial and errors.  These changes are also the harbingers of some exciting new times ahead. They’re a sign that she’s growing in skill and ability; a sign that she’s pushing herself forward to new things and will be using her little hand in ever more confident and adventurous ways. These changes are the heralds of a whole wealth of new abilities and skills that I cannot wait to see her master.

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One-handed signing in a two-handed world

One-handed signing in a two-handed world

There is no better example of the emotional journey we’ve been on over the last two years, since our daughter was born without her right hand, than looking at our progress through our baby signing classes.

I started attending Sing and Sign classes with Hero when she was around 8 months old. It’s a superb baby and toddler class, which develops the use of hand signs and gestures as a means to supporting the development of a child’s speech and vocabulary. Hero is a bit of a late talker and so we’ve found the signs an invaluable and fun means of communicating with her and her with us.

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“What’s that?”

 

Sitting in the spotlight

And yet, when we first started I really struggled with the classes. As you can imagine, the class is all about hands and how we use them. The opening song at every class called for the children to hold up their hands and wiggle their fingers. Back then, when Hero was younger and my feelings were all a little more raw, I used to get a twinge of heartache every single time.

Back then I felt like the song lyrics shone a little spot light on Hero and I, I felt like it drew attention to her difference and I’d find myself looking down at the floor and trying to ignore those feelings of being in a goldfish bowl. All feelings I strongly suspect many parents of a child with a difference can understand and empathise with. Also feelings that, I’m sure, weren’t entirely true (see my post about feeling hypervigilant). I don’t really think anyone was looking at us, maybe they were at first, maybe they weren’t. But the reality doesn’t shake that sense of insecurity you might feel inside from time to time as you come to terms with a child’s difference.

However, as time wore on and we kept going to classes I started to adjust. Many of my blog posts have highlighted our journey from worried and hyper-sensitive to accepting and confident; it doesn’t occur to me now that Hero is anything other than one of the Sing and Sign crew. I don’t even notice the words and the lyrics anymore, the ones that at first felt so painfully obvious.

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“Where is it?”

 

Two-handed signs for a two-handed world

Another little hurdle I felt that we faced was in making and expressing the signs accurately when Hero was missing half the tools to do so. Like many things in life British Sign Language, and other signing variants, are designed for a two-handed world.

At first adapting the hand signs, while simple, still sent these feelings of sensitivity bubbling up in me. Sure, we can adapt the signs, but it felt a bit rotten that we had to. Those feelings say a lot more about my own emotional journey as a parent of a child with a limb difference than they do about any real challenges we may have faced using the signs in class!

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“Ouch!”

When I finally plucked up the courage to speak to our class leader, Beccy, about how I felt using and adapting the signs she was nothing but reassuring that any changes we made would not remotely be a problem.

“At Sing and Sign, we don’t teach sign language as such, we teach communication. Communicating through sign with your pre-verbal little one is an amazing window into their worlds. It doesn’t actually matter what signs or gestures you use and this makes signing possible for everyone!” – Beccy, Sing and Sign Chepstow Newport Lydney Monmouth

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“Baby” 

Unconscious little changes

Up until our second term the signs had been pretty easy to adapt and Hero started doing it naturally and unconsciously – not realising she had any difference at all of course. However, when we started learning the British Sign Language alphabet I began to foresee some possible issues. A number of the letter signs require the use of fingers from both hands, something that’s simply impossible when you have only five.

Exactly as I’d done after being told of her difference at our twenty-week scan, I took to the Internet and researched how to use BSL with one hand. I couldn’t find a lot to help me guide Hero. While limb difference is the norm for us, it turns out that it’s not so common that there is an official one-handed signing system! However, I was eventually directed to a young lady’s Instagram account and YouTube videos. Just like Hero,  Elizabeth had been born without one of her hands and despite this has taken up and excelled at British Sign Language.

She had been kind enough to share videos of her one-hand-adapted signing online. She bravely put herself out there and was keen to test how well she was being understood.  She’s been reassured by her viewers and followers that, despite using her limbs slightly differently to make the signs, she was easily and completely understood. I loved trawling through Elizabeth’s videos and I started to use some of her adaptations with Hero in class.

 

 

“I’m always reassuring parents that they don’t need to know the official sign for something. Make it up! That’s part of the fun! Babies and toddlers quite often adapt the signs that you show them anyway and may even progress to making up their own. If signs need to be changed slightly to accommodate differences, then that’s no problem. Consistency is the key!”- Beccy, Sing and Sign Chepstow Newport Lydney Monmouth

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“Rabbit”

Offering reassurance and finding some of my own

When I set out to write this post I was hoping to reassure other parents who might be nervous about attending baby groups or similar style classes with their limb-different little one, having received numerous messages expressing that fear. Yet, as I began writing, I realised that as well as (hopefully) reassuring others, an exploration of our baby signing journey has shown me just how much change there has been in my own mindset, from the worrisome early days when Hero was just months old to now as I wrangle our energetic, tenacious and entirely unstoppable two year old!

From our very first term when I felt self-conscious and acutely different in our two-handed world, Hero now totally rocks these differentiated signs. They were designed for communication and have given Hero and I a fantastic means to understand one another. We’ve been able to have entire conversations using only our hands before she’d even developed the vocabulary to express the same things out loud.

I’ve gone from self-consciousness and a little fearful to confident and certain and, as I’ve said time and time again, it’s been Hero who’s enabled that change in me. It didn’t matter how many times someone told me she would be just fine, I could never quite let the worries go until she started showing me for herself. She didn’t wonder if she should do the signs or not, she didn’t question whether they were different to the other kids’ signs or whether they even made sense. She just went ahead and did it – exactly as she approaches everything in life.

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“More!”

Identifying the difference: a new era

Identifying the difference: a new era

Something happened this weekend that, while seemingly insignificant, to me feels like a huge leap in to thus-far unchartered territory. It feels like a loss of innocence and naivety, which I was hoping to cling to for a little longer.

Hero turned around to me, entirely out of the blue, and pointed to her little hand saying, “baby”. She then tapped her left hand and said, “mummy”.

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Introducing Baby Hand and Mummy Hand

Now, in her world at the moment every single thing fits into the Mummy, Daddy or Baby categories. If it’s small, it’s a baby one, if it’s big its either Mummy or Daddy. This categorisation will apply to everything and anything from leaves, to stones, to sticks, to animals, cars and people. It can be a little embarrassing as she shouts “Daddy!” at almost every random male we pass. “Yes, Hero, that might well be a daddy. It’s not your daddy though!”

A growing awareness

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The 40th Reach AGM and Family Weekend

It’s no coincidence that Hero’s announcement about her hands came when it did, as we spent the weekend with Reach families from across the country celebrating the charity’s 40th AGM and Family Weekend. While the adults laughed and cried our way through the conference, packed full of inspirational and fascinating people including speakers from the fields of specialist hand surgery, neuroplasticity research and TV comedy, Hero was in the Reach crèche run by the ever-awesome team at Freedom Childcare.

I wrote last year about what an odd experience it is dropping Hero off at the Reach crèche. At any other childcare facility or toddler group, experience has told me that she will stand out from the crowd and that, whatever she’s doing, she’ll be noticed (the loss of anonymity that having a physical difference brings was brought up in one of the conference talks, to many understanding nods from the delegates.). But at the Reach family weekend things are different, she joins a whole cohort of limb-different kids and, for a rare day, she’s not going to stand out. She’s one of them and she fits right in.

An unsurprising surprise

While the adults are all learning how our children’s brains might be compensating for their missing limbs and are weeping our way through tales of victories and success from across the limb-different community, it probably shouldn’t come as a surprise that the children are discussing their differences too.

Yet despite this, despite spending the weekend surrounded by limb differences, her pronouncement still came as a shock to me and, I won’t lie, a bit of a heart aching blow. Since her birth, Hero has shown us that her brain knows there’s a difference in her hands – despite what well-wishers might tell us. We’ve watched her try to use her right hand as if it were a fully functioning, five-fingered limb. But what she’s not been aware of is her own difference compared to those around her.

She has never looked at her hands and compared them to her peers, or even to ours as parents. She’s been blissfully, naively unaware that there is anything about her that is different from anyone else.  I’ve said in the past that I think, in some ways, these years have been golden ones. These are the years where her confidence can’t be damaged by her difference, these have been the years when she doesn’t notice if someone is staring or asking questions. These are the years where, to her eyes, she unconditionally fits in.

Her identification of her hands as a ‘baby’ and a ‘mummy’ hand feels like the beginning of the end of those golden years, like the start of something new. It feels a little like her innocence at the world and its judgements are starting to erode away and she will be left more exposed and vulnerable to people’s judgements and opinions.

Please don’t get me wrong, I don’t believe that the end of these golden years of innocence means that her life will inevitably be difficult and a hard from now on – far from it. It’s simply that, over the past years my concerns for Hero have changed from things I thought she wouldn’t be able to do (what a joke!) to how she will cope socially with her difference. What will it be like when she starts school? How will her nursery help her to deal with questions or attention from other kids? What will happen to her self-esteem when she first acknowledges a rude stare or unkind comment?

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Rugby? No problem!

Their hard-earned confidence

The adult Reach members who speak at our family weekends are inspirational, truly. They are athletes, professionals, actors, comedians… they are successful, they are confident in their own bodies. But many of them tell the same story; they tell of the troughs they fell into, they tell of the hurdles they had to overcome in order to be – and to love – who they are today. They tell of the insecurity, and of the fear they battled through to win their hard-earned confidence.

Suddenly, her identification of her difference, while representing an exciting leap in her understanding and awareness, also feels like an opening of a door or a shedding of her armour that will leave her more exposed to knocks in her currently unshakable confidence.

As parents we would do anything and everything to ensure our child felt safe, confident and loved. Yet a physical difference is something that we simply can’t do anything about. If she’s struggling in school I can get her extra help, if she’s struggling with friendships I can support her in building bridges. But I can’t give her a hand. I can’t take away the one difference that she might want to be rid of in the future. I can’t answer the inevitable question of, “when will my little hand grow?” with anything other than a crushing finality. I can answer sensitively, supportively and compassionately even, but not untruthfully.

So for now, as we embark upon the terrible twos and navigate emotions she never even knew existed before, both she and her parents are entering a new era. It’s a era of public tantrums, of our small person learning to express herself. But it’s also an era of new discoveries. An era of learning to understand her physical difference, of noticing when others notice. We’re entering an era when how we react and how we respond will be crucial in helping her to maintain her self confidence and self belief in a world that’s suddenly starting to look very different not only to her, but to us too.

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Breaking out the moves on the dance floor at the 40th Anniversary Reach family ball 🕺