I’ve lost count now of the number of people to tell me my 22 month old daughter will, “Just get up and walk on her own”. Or that she’s, “Just too lazy at the moment”. Or that she, “Just doesn’t have any interest in walking yet”.
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….
…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”…
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…
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.)
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…
I’m glad you’ve got some answers and are now getting the treatment she needs. My friends little girl was walking within 3 months of her treatment starting and she is coming on leaps and bounds!!
I remember my own parents forever correcting my feet (they turned inwards) but I appretiate it now. They still do it when I’m tired but no as bad as when I were little.
Good luck with the treatment and hopefully a more confident and dancing frog will emerge very soon x x
I love the idea of her dancing. She loves music so maybe when the treatment kicks in she’ll be hard to stop! x
ahh Molly it must break your heart to have to strap her ankles up when she hates it so much. She sounds such a little character and I love her little boots…..
oh & there’s a shop on Ebay that as well as selling cute Converse have some little diddy Kickers : http://stores.ebay.co.uk/Harriss-Footwear
xx
You’re a star. Thank you so much for the tip Helen!
Sounds very tough. And you’re right we all like to explain away while a child isn’t doing something when they ‘should’. I guess the consolation is now you know exactly what the issue is and can do all you can to help it. But almost 2 and 2 is a tricky age. 2 year old girls are headstrong and I speak from experience! More headstrong than boys I think. You have your work cut out but you’ll get there as you say.
Diva’s, the lot of them. But we wouldn’t have it any other way, right? *looks around desperately*
you know I know how you feel lovely, but be reassured it will be resolved!
until then I have a lovely non walking two year old who would love to come play
xxx
Non-toddling toddlers are always welcome here!
Oh bless her. I really don’t know what to say as I haven’t really heard of these conditions before but at least you have answers now and it sounds like she is determined to get there. Do you think it would have made any difference if the health visitors had picked up on it earlier? I guess there is no point in wondering that now but it annoys me when health professionals don’t pay more attention to things x
I don’t think I can “blame” anyone, and it’s probably not useful anyway. If I’m going to blame anyone, it’d be myself, for not being more pushy and for just accepting that “She wasn’t ready” etc etc. But yes, you’re right, she’s very determined and she’ll get there in the end. x
Oh Molly, I can imagine how heartbreaking the ‘No’ and ‘Bye Byes’ are.
Frog sounds so determind, so I’m sure she won’t let this hold her back for long.
xx
I have every faith in her. She so desperately wants to walk and the fact she’s trying to do steps on her own every day shows the will is definitely there. x
oh Molly, I can image how upsetting it is for you and how many what ifs you have no you have your answers, I too try very hard to be laid back mum, no worring mum, none forceful earth mum but sometimes being so doesn’t get results quickly but never change to over anxious mum becuase being relaxed will have untold benefits and will make frog much more content and happy in the long run. both you and frog are amazing and I know given time things will work out just fine xx
Thank you for the lovely comment Sarah. We’ll be fine, at least we know the issue now. x
Oh bless her. I love stroppyness in a child when they need to be stroppy, it’ll get her through this.
Its really interesting what you say about shyness and hypermobility. I didn’t walk until 2 and a half and into my primary school years had ongoing issues as I wasn’t good at sport (essential in Oz) and became quite bookish. That explains a lot to me.
Joseph is very similar, whilst he is now walking, he’s 14 months older than F, he is still very wonky and he does the same, retreats away from more physical kids.
It is a bit ridiculous that her feet and hip placement weren’t sussed earlier by the professionals, but she is getting what she needs now and that’s important.
It’s really interesting about the link between caution and hypermobility isn’t it? That was one of the things that stood out for me. Although, once F is comfortable in a situation she’s anything BUT shy. Same as lots of toddlers I’m sure, hypermobile or not. x
HI Molly, nice to make contact – thanks for posting on mine. After reading this I SO feel for you. Anything to do with our children wrenches our hearts about so much. We do our best as mums, but have to keep those run away emotions in balance with all this ‘wisdom’ coming our way and so-called experts fobbing us off as neurotic mothers! I now know that intuition is far more valuable than any of that stuff! That’s easy to say in hindsight though, isn’t it! But if I’d listened to my intuition my baby wouldn’t have been born on the back seat of the car – so I tend to prioritise it now! It seems to have stood us in good stead for getting those babies to teens and beyond now. Enjoy! x
Yep, hindsight is a wonderful thing!
It’s so bloody hard when people give out advice because really they mean well, but we’re crumbling inside and screaming at them to shut the hell up. I’ve had it with Amy, before her diagnosis; everyone knew what was wrong with her yet no one mentioned autism. Until a lovely lady at her nursery pulled me to one side and talked to me about it being a possibility – and then we found out who our real friends were when one by one they backed away – but that’s another story. I guess with the right care and physio she will get there, but it is going to be tough and you already know that the road ahead will be strewn with obstacles. I gave up on GP’s, health visitors and health professionals long ago. I’m not a doctor, but I know a hell of a lot more about my daughter’s condition than the so-called experts do.
Bless you, CJ x
Thanks for the comment CJ, I have total faith that now we’re on the road to dealing with the problem. I’m glad I didn’t just assume it would go away on its own though. x
You have obviously not been doing the moisturising routine after her bath that she got used to with her mar mar! Little madam was just over compensating with the Sudocrem. Love ma x
Little Madam didn’t stop asking where “Mar Mar” was after you left!
Guilt is an inevitable accompaniment to parenting, and it’s inevitable that you should feel it because it’s what we mothers do, but how could you have known, if health workers and the like didn’t spot it? You’ve still spotted it pretty early on (I’d have probably waited until 3 in case GPs thought me neurotic!). I suspect that the ensuing treatment and restrictions will be much worse for you than for her because you’re far more aware than she can yet be of what she’s missing. It’s tough on you all to have this to cope with, but she’s a lucky little girl in many ways to have such a loving mother and supportive environment to help her through it.
You’re right, it probably is far worse for me than her. To be honest, she’s been really happy, outgoing and very funny recently. She’s getting more mobile every day and is desperately pleased with herself every time she manages a few seconds standing without holding my hand!
Well it’s all a bit shit isn’t it? Good you know what it is but I can only imagine the stress of trying to get a determined little girl to have her feet strapped etc. But please keep sharing the updates, love seeing how you are all progressing.
It’s not great, but at least we now have some exercises and a plan for dealing with it. She’ll be fine. She’s a very determined little person! Will write about it again if I have more to share though.
I am glad that you have finally got a diagnoses, and I hope that the treatment starts to work for her. Mr L got diagnosed with Hypermobility last year at the age of 25 and he has messed his body up from doing various things that he should never have done. It was great to finally get the diagnoses but is hard to get your head around things. xx
It’s definitely better to know early on. It may be that once we get her walking she’ll not be affected too much by it. At least we know so can take it into consideration in the future too. Hope MR L is OK. x