My daughter climbed a hill today. Not just any old hill, but a really long, really steep one.

This is a big deal because, just over a year ago, she couldn’t walk.

In May last year we found out my toddler had hypermobile joints. Put simply, we were told her joints were too flexible to support her weight. Imagine a pipe cleaner or elastic band trying to hold up a marble, and you get the picture. 

At nearly two years old my daughter still couldn’t walk and would be left sitting on the floor watching on helplessly as other children played around her, running and jumping. It was painful to watch the side effects of her delayed walking: withdrawal from play, intense shyness in new surroundings and an obvious hesitance to use her very chatty vocabulary the more she became aware of her difference to other kids.

Once physio treatment started we noticed a marked improvement. Her little feet – with no in-step and turned out at right angles to her body – started to move inwards. She was given special Piedro boots to do the job of her bendy ankles and to help strengthen her knees and hips.

Once she was up on her feet and walking, these were replaced with hospital-issue insoles which slotted into normal shoes. She still has these and, we’re told, probably always will. High heels and wedges look unlikely in the future, although our doctor won’t rule out the possibility that her feet will correct themselves at some point.

Just over a year on and I often forget the battles we went through to get Frog up on her feet. The nights where I would worry myself to sleep, afraid to imagine what could be wrong with her, are a distant memory.

I can barely remember the lump in my throat as I watched my baby be held down, screaming, under an X-Ray machine, as doctors worked to rule out hip dysplasia. I have brushed aside the image of my girl clinging to me terrified while a needle was jabbed into her soft skin and blood was drawn, as consultants checked her intense fatigue wasn’t caused by anaemia – or anything more sinister.

The truth is, just over a year on and Frog is OK. She can walk and run and jump with the best of them. Her hypermobility is only really evident when she gets excited – especially if she’s sitting down. That’s because her little body tenses with glee and her legs bend the wrong way towards the ceiling, like a double-jointed picture of happiness. (Incidentally, she also flaps her arms about as if she’d take off, but that’s nothing to do with her hypermobility.)

When I look back on where we were in April and May 2012, I can barely believe what my three year old is now capable of. Although she still often needs a buggy and asks to be carried after a while, she is a determined little person – and strong willed to boot. Today she decided she was going to walk up the huge hill to our house all by herself, and she did.

Who knows, tomorrow she might run up it.

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The picture above was taken around a year ago. Frog’s feet naturally fell at right angles to her body. Her ankle joints were so flexible that her feet caved in, so she was trying to balance on the side of each foot. It’s not surprising she couldn’t stand up on her own.

At the time, it was heartbreaking to see my determined tot trying to catch up with her peers. She visibly withdrew into herself because she couldn’t join in with the games of the other toddlers running around her. People often assumed she had developmental issues or was at least eight months younger than she was. I was angry a lot of the time and became an expert at biting my tongue.

We had three months to wait for an appointment between our initial GP visit and our referral. Once we’d had our referral at the hospital, we had another two months to wait for the first physiotherapist session. By that time, my daughter was almost two years old – and still not walking.

Looking back, the six months between January to June last year were ones of constant frustration. I was a frustrated mum, battling to get information and find a cause to something I KNEW had a cause. Every day saw me bat away well meant advice from other parents whose children “hadn’t walked until they were two” etc. Although these words were meant as a kindness, in my paranoid, ill informed state, I assumed they were trying to tell me nothing was the matter. I knew something was the matter though – just not exactly what.

A year on, and we are smiling. Our toddler eventually got up on her feet and walked all by herself just before her second birthday. She was given special boots (like Piedro boots, but a different brand) just after this, to help strengthen her knees and hips. These boots did the job her ankles were supposed to be doing, helping her gain in confidence.

Once she was properly, confidently up and about, the boots were ditched. We put Frog in hi-top trainers which supported the ankle, or boots from Next. Clarkes were no good, as she wasn’t deemed “ready” for the “big girl shoes” but the soft soled ones provided no support to her ankles. Equally, her tiny feet were too small for the boots recommended to us – Kickers or Timberland. So we opted for a brand called Ricosta. They were perfect at the time.

While I worried about her future footwear and the inevitable battles we’d have over high heels, I was relieved to see my daughter finally blossom into the little girl I knew at home; confident, chatty and playful. The panic in new situations and her habit of covering her face and whispering “scared” stopped almost as soon as the walking started.

Then came October and a final physio appointment, in which we were signed off, with the warning to come back if Frog complained of pain at any point down the line. And we had an orthotics appointment in December, which saw my two and a half year old issued with special hospital issue insoles, to support her ankles and give an arch to her foot which is completely lacking. This means she can finally wear “big girl” shoes.

Today, we received a letter from the Paediatric Orthopaedic clinic at the hospital. It was following up our most recent check up, just over a week ago, confirming that we won’t need to go back. Another department has officially signed my daughter off, stating a “marked improvement” and noticing she is now “walking with an entirely normal gait”. Now it’s just the orthotics team we need to keep seeing, who’ll evaluate her progress with the insoles.

Last year was a tough one. We didn’t know what we were dealing with and there were times when it felt like there’d never be a moment when I’d see my toddler stand up and walk on her own. She has hypermobile joints, possibly hypermobility syndrome. Her joints are so bendy that we’ve been warned it’s unlikely the issue will ever just go away. Although it might.

That’s the thing with hypermobility. You just don’t know. Doctors are hesitant to diagnose hypermobility syndrome until a child complains of joint pain and fatigue. We have the fatigue, but Frog isn’t yet old enough to tell us if her joints actually hurt. All we know is that an active day or a morning at nursery needs to be followed by a rest, or she’ll ask for Calpol and end up sleeping as much as 15 or 16 hours the following the night. As nice as that is for parents who enjoy a lie-in, we’re aware it’s not “normal”.

During the past 12 months I’ve learned lots; how to trust my child, how to be patient, where to search for information and how to shout if I need to. I’ve written articles about what it’s like to be the mum of a toddler with hypermobility and I’ve given a presentation to a room of students training in childcare.

My answer is always the same: it’s not easy, but you get there. You get there, because you have to.

If your child has recently been diagnosed with hypermobility, please know that it WILL get better. There IS light at the end of the non-walking tunnel, however far off it may seem.

And if you need any more information, you’d do well to contact the Hypermobility Syndrome Association.

The post Living with a hypermobile toddler – a year on appeared first on Mother's Always Right.

The waiting room is airless. People mill around aimlessly, waiting for their overdue appointments to see the consultant.

Fraught mothers attempt to entertain their grumpy children, desperate not to be the ones with “that” child. I am one of these mothers. My child does not want to be here. Shouts of “JUICE!” and “WO AWAY!” fill the air.

But then she spies some shoes.

Not just any shoes, either. A box of dressing up shoes. They sparkle and shine, tempting her like a bumper pack of chocolate buttons.

Next to the shoes, sits a kitchen. It’s packed to the brim with plastic fruit, wooden spoons and pretend boxes of cereal. My daughter is in heaven.

There are also rocking horses, three full bookshelves, lego, toy instruments and train tracks. Suddenly, the airless waiting room isn’t such a bad place to be. It’s almost jolly.

And then it hits me: ALL waiting rooms should be this way – not just children’s ones.

Picture the scene – you’re waiting for that appointment with the dentist. Eagerly you reach for the nearest magazine, only to find it’s a 5 year old copy of Gardener’s World. You spend the next 15 minutes determinedly trying not to catch the gaze of the person sitting next to you. You might attempt an awkward whistle to pass the time.

But then you spy a box of Christian Laboutin’s finest. No more awkward whistles! You bond with your fellow waiting room victims over a shared dressing-up experience. You might not be au fait with 6 inch platforms but no matter – it’s just a game to pass the time!

Or maybe you’re not keen on dressing up. How about a spot of adult crafting? For the knitters amongst you there’s a bag of the best wool and a flurry of knitting needles to try out while you linger for your appointment with the bank manager.

And for the gadget fans, you can choose between an XBox or an iPad to keep your mind off that odd rash you’ve come to see the doctor about.

It’s a faultless idea. No more pre-appointment butterflies, no more pretending to read an old Reader’s Digest in order to avoid conversation, no more desperate texting of every person in your phone book. No more boredom.

Until, that is, 83 year old Margot wants to try on the same Laboutins that you have your eye on. Or 68 year old Fred wants to take too long over his turn on Call of Duty. Or Gerald, aged 45, refuses to share the sparkly skirt you wanted to try with those five inch platforms.

Maybe not then.

Lounging: the after-effect of a waiting room full of toys

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Lover of flapjack, creator of mischief, wearer of shoes.

She likes to crayon, play with mud and hide before bathtime.

And she can’t walk.

My 22 month old daughter is hypermobile. This means her ligaments are too flexible so she has problems balancing and holding her own weight. Every day she does a little more, takes a few extra steps unaided, stands on her own a few seconds longer, gains that extra piece of confidence to forget about crawling for another minute. We are hopeful that physio and lots of encouragement will work and help us avoid the dreaded stress fractures and casts.

That last paragraph – the part where I just went into lots of detail about my daughter’s “disability” – is something I find myself explaining over and over again every day.

To the lady in the shop who comments, “Ah how lovely she is. What a cutie. She’s very tall for her age isn’t she?” I launch into full hypermobility syndrome rant.

To the other mums at the various toddler groups who ask, “So she’s not walking yet? How old is she again?” Yep, they get the full hypermobility syndrome rant too.

And to the stranger at the park? Uh huh, you guessed it. The rant.

I don’t know why I feel the need to “explain” my daughter’s lack of independent walking. It’s really no one’s business after all. But people are inquisitive. They’re trying to understand. To place my daughter in a box of explanations. Is she a late walker? Or is there something else wrong with her? She doesn’t look like a baby, yet…. yet… she’s still not walking. What’s wrong with her?

Because, unfortunately, the plain old ugly truth is that they don’t see her.

They don’t see her spark and her sass and her wicked sense of humour. They don’t see the flash of intelligence behind her eyes and her dogged determination.

They just see her wonky legs and wonky feet, that don’t work properly.

They see her lack before they see anything else.

Sometimes I want to shout from the rooftops, “There’s nothing wrong with her! She’s just as clever as your child! She knows every part of her body, can count to five and loves to sing Three Blind Mice! Just because her legs don’t work doesn’t mean her mind doesn’t! Just lay off!”

And other times I want to stubbornly refuse to answer the questioning looks. I want to offer something petty and childish instead. Something like, “Oh she’s only 9 months. Incredibly advanced for her age really. A real child genius.”

At least then we’d escape that second look. The one I dread more than the questioning one. The look of pity.

It’s a funny thing prejudice. It comes in many forms. Never in my life have I ever had to experience any form of prejudice. I’m white, heterosexual, from a middle-class family with no huge skeletons in the closet, other than a bit of an unhealthy crush on Take That.

I don’t know how to deal with the questions. I don’t know how to bat away the pity. I don’t know how to brush off the prejudice.

But I know that I’m going to give it a bloody good shot.

So yes, my daughter doesn’t yet walk. Yes, she’s nearly two years old. And yes, she has something “wrong” with her.

But that is not who she is. So you can keep your labels and your boxes. They’re not welcome here.

We’ll just walk all over them.

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It turns out they’re all wrong.

No matter how well meant these pieces of advice were, they were misplaced.

When you have a child who doesn’t walk, everyone is eager to put your mind at rest. It’s a kindness. It seems that we all know someone who knows someone else who knows someone else who had a late walker. A late walker who just, suddenly, got up one day and ran across the room. (My own husband is one of these miracle children, afterall.) The result can be the false illusion that, actually, it’s totally normal for a child of 22 months not to be walking.

But this is a bit of a fib really.

Because now – finally – we have a clear diagnosis for our non-toddling toddler. She is not “just” anything. It’s nothing to do with laziness or disinterest or lack of willpower. It’s nothing to do with her mental development either. It’s nothing that will suddenly, miraculously, cure itself.

Our daughter has hypermobility syndrome. The hypermobility is exaccerbated by the fact she had correctional talipeze when she was born. We thought this issue had resolved itself, so that her once wonky newborn feet wouldn’t be an issue for her later in life.

As gorgeous as these feet once were….

Photo credit: CP Photography

…they didn’t just correct themselves.

Various milestone checks with GP’s and health visitors told us there was nothing to worry about.

The fact our baby wasn’t steadily sitting unaided at nearly 9 months was shrugged off as, “No big deal”. The fact she didn’t crawl properly until she was 13 months was put down to the fact she was, “Concentrating on her language development instead”.

The thing is, all of these reasons for the lateness in our daughter reaching her physical milestones (in some cases up to 6 months after her peers) could easily have been explained away in a number of ways. I explained them away myself, determined not to enter some kind of baby race competition. I was Earth Mother. Relaxed Mother. I refused to be Paranoid First Time Mother.

I wish I had been Paranoid First Time Mother.

I wish I had listened to my instincts.

I wish I had looked at these feet and hips and realised they weren’t “normal”…

Hypermobile / Talipeze-y wonky feet

Anyway. Wishes aside. We now know what we’re dealing with. We’re looking at some intensive physio. Exercises at home. Lots of swimming. Strapping on her feet. More exercises.

Every time we see our daughter standing with her legs wide apart and her feet splayed out, we have to correct her posture. Clearly, this is intensely annoying for her (so much so that she’s likely to shout NO before attempting to belt the offending person), but we do it anyway. Seconds later, they’re splayed out again. It’s a miracle I could even take this picture really…

Exercises exercises exercises

The strapping isn’t the number one most popular item in our house either.

As I held Frog down on the physio table, she screamed while her wonky feet were strapped up. She shouted, “Hurt! Hurt!” before promptly shouting, “Bye bye!” to the Physiotherapist, not even having the decency to pretend that she was having a good time.

The same happened at bedtime this evening, when we had to reapply the strapping she’d removed herself. There’ll be no one left in this house once she relegates us all with a, “Bye bye!” and “Out!” all shouted at the top of her voice while said strapping is taped on. (As parents, it makes us feel ever so popular.)

Taped foot

All this palava is taking place because Frog’s ligaments in her ankles are too tight. It means she can’t move her feet around in the position they’re meant to be. And because everything else is too flexible she is overcompensating. Her muscles are having to work five times as hard as those with “normal” ligaments.

Without shoes her ankles touch the floor, meaning she’s only using approximately a third of the area of her foot to balance on. It’s no wonder she can’t walk yet. It’s testament to her dogged determination that she’s managed even a few steps on her own at all.

Without the treatment, it’s likely she would suffer stress fractures, apparently. There’s still a chance she may need her feet to be in casts.

Shoes are a problem too. She needs more support around her ankles but, until her feet are placing properly, she’s unlikely to get referred to an orthotics department to be put in the magic Piedro Boots. Kickers boots have been recommended – along with various other brands. But, yet again, we’re up against more hurdles. They either don’t sell them in a size small enough (3.5 – yes, Frog has weeny feet) or they don’t sell them full stop.

The hypermobility also means Frog is extra tired. I suppose you would be if you were attempting to walk around on a third of your foot all day, play, shout at people and make your muscles work as hard as if you were on a non-stop Spinning class. Our 22 month old is now forgiven for behaving in an uncharacteristic toddler manner, asking, “Bed Mummy?” at 4.30pm, and sleeping until 10am the following day.

Caution is another typical trait. The day at the childminder’s last week, when she sat in the corner for hours on end with her hand over her face? It seems hypermobility can be blamed for that little episode, if we so wish. The theory goes that kids who aren’t as mobile as others, tend to feel more vulnerable. Quite literally, they can’t run away. So occasional bouts of shyness and withdrawal make sense really.

In all other areas Frog excels. Her language is spot on. She is as much of a diva as ever, with a wicked sense of humour to boot. Despite what many people imply, the fact her legs don’t yet work is no indication of a problem with her brain. She is frustrated and angry and wants to get up on her feet already.

She wants to PLAY goddammit. Outside. Without her mum.

And one day she’ll get there. One day.

Until then, she’ll have to content herself with being naughty inside instead…

Note to self: don't leave child with unattended pot of Sudocrem

The post The reason my 22 month old STILL isn’t walking appeared first on Mother's Always Right.