Facing my fears: Thinking about school

Facing my fears: Thinking about school

Sometimes things just seem to fall into place and what we were once afraid of doesn’t turn out to be so serious after all. It’s a bit like waking up in the morning after an all-consuming fear has hijacked your night, only to discover that the worry isn’t quite so mountainous in the morning light.

I might be thinking ahead a bit, but the idea of my eldest daughter starting school for the first time next year scares the hell out of me and, in all honesty, it’s not just because she’s missing a hand. I’m sure that I would feel the entirely the same no matter how many hands she had. However, there’s no denying that your child having a visible difference can magnify or exacerbate these totally normal worries.

Not only is my summer baby heading off to school mere weeks after she turns four next year, meaning that her baby sister and I will miss her horribly during the brightest hours of the day, watching her walk into school for the first time will be akin to watching her walk out into that big wide world.

The world is full of wonders, adventures and beautiful moments, but it is also full of unkind words, fear and upset. Sadly I know all to well that if I even think about trying to protect her from the bad then I would be robbing her of much of the good as well. Knowing that, however, doesn’t make the prospect any less daunting!

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Venturing out into the world

I’ve been known to be a bit hyper vigilant from time to time when I’m out and about with Hero, sometimes this has been a misplaced awareness and on other occasions my caution has been bang on the money. Sometimes kids have stared, or grabbed at her little hand in order to get a better look. Sometimes they’ve asked blunt questions and I’ve had to step in as she wasn’t old enough to stand up for herself. I’ve often worried about whether I’m responding the right way or modelling the right reaction to her, but wondering if I’m doing it right is less frightening than the idea that I won’t be there to do it at all.

Living in a beautiful bubble

To my overprotective mind, sending her out into the world is leaving her open to the influences of others. She lives right now in a bubble of friends and family who all love her very much and who don’t even notice her hand. Her hand isn’t ‘a thing’ at the moment and the irrational side of me wishes it would never be a thing. Opening her up to the opinions of others means accepting the possibility that someone might hurt her. I know that these are fears that many, if not all, parents share when it comes to their little one’s growing independence. We all want our children to be happy, to be liked, to be accepted.

I know all too well that I can’t stop any hurtful things from ever happening to her, even if I did hover over her like a helicopter (which, for the record, I don’t), but the idea that someone could and might make a comment about her hand – about the one thing she has no control whatsoever – makes my heart plummet.

With the view of allaying my fears (Hero’s not worried at all of course – she doesn’t even know what school is yet and naturally, she would love to go if she did) we decided to visit our local school last month. She currently attends a wonderful nursery in the town where her dad and I work. She loves it there, but she’s not with children who will be in her catchment area when the inevitable happens and she starts school in 2020. So as things stood, starting school would not only mean a change of venue and a change of friends, it would mean meeting a whole new community of people to whom her hand might have been a surprise.  To my mind, the idea of starting school with an entirely new cohort was going to make my worries for her worse and possibly her own experience more of a challenge.

So off we trundled to our local primary to tour the school and also to visit the preschool that sits alongside it.  The vast majority of the preschool children go on to attend the primary– so for us that meant that Hero would be making friends with her future classmates; children who are currently too young to care that she might have a difference. If she could start school with friends who already knew her, then I felt it would be half as scary for both of us!

Fabulously unfazed

As part of our tour of the school, we wove our way between the flock of chickens and the duck with the wonky wing that roam the playground and made our way into the reception and year one classroom. The children stopped to look at the newcomers to the room and as we crossed the floor to the door on the other side I felt a bit like a goldfish in a bowl. One little boy in particular stared at Hero at she passed. He kept staring, turning his head in comic slow motion to follow her progress across the room. I had that little bristling feeling, like an angry bird puffing up my metaphorical feathers and getting ready to square my shoulders. Just before we reached the door, this little boy stepped forward, crouched down and patted Hero on the head.

“Well you’re super cute, aren’t you?” he said, beaming at her before skipping back to his table.

I couldn’t help but grin. I’m not sure I’ve met many cuter kids than that lad! He was so brim-full of welcome and delight at the small person who was even smaller than himself, totally unfazed by any differences.

Right before we left the room I spotted one little girl with a vibrant pink brace on her left leg and there was another with a colourful headband holding her cochlear implants in place. So Hero was far from being the only one with a visible difference. Those children and that little lad were welcome reminders that personality shines out far more than any physical difference.

The things they don’t see

A little later on our tour and Hero was hanging out in a tent with another little girl who already attended the preschool.

“Look at that!” the little girl said to the nursery manager.

“Yes, that’s the new girl,” the manager replied.

“But she…” The little girl frowned and looked intently at Hero, clearly puzzled. My feathers started puffing up again.  It’s almost impossible not to feel a little on edge when these conversations happen; inevitably all those kind sentences and snappy one-liners that you came up with at home immediately abandon you.

“But look…. but…” the girl was having trouble articulating the problem she was having with Hero. Even the nursery manager was looking a bit unsure now.

And then she at last burst out; “But she’s got short hair! I’m a girl and I’ve got long hair and so does Sarah!”

And there it was again, another little one – in the school we were thinking of sending our daughters to – who just didn’t see Hero’s limb difference. They didn’t see odd, they didn’t see unusual. They saw cute and they saw style choices that have little consequence.

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All I need to know

When I got home that evening, Hero’s dad asked how the tour had gone. He asked if we’d talked about her hand at all and it was only then that I realised – it hadn’t come up in conversation once. Somehow I had always imagined needing to explain it to her teachers or discussing how we’d like it handled. Yet when the time came I hadn’t needed to ask any questions, I hadn’t needed to bring it up at all. The response and reaction from the children in the school and the nursery were enough to tell me all I needed to know about that place.

And just like that, my worries about Hero starting school suddenly came out into the daylight and found they weren’t as big as they’d been pretending. After one tour, where Hero asked to be left behind while her sister and I went home, I had gone from fearing the oncoming march of time to actually looking forward to it.

Now when I think of school I think of the excitement she’ll feel going into the classroom for the first time, running out to play and meeting her new teacher and friends. I think of how darn cute she’s going to look in her school uniform and of all the wonderful things she’ll learn while she’s away. I no longer seem to fear the unknown assailant who might cast a flippant comment her way. Sure, it might still happen. But somehow, I just can’t see it happening at that school, in that community. Not the one with the duck with a wonky wing waddling about the playground and greeting the children as they come in.

 

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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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