This is my daughter.
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.
my love, feeling the rant for you, it’s quite understandable and must be very hard not to lose patience with perfect strangers but equally you will more than walk all over the labels and when your gorgeous and highly intelligent (really she counts to 5 and she’s not 2…I think she might be a child prodigy!) little lady runs about you will remember these days hopefully with humour and knowledge that they didn’t do any harm….in the long run, you know what I mean! Anyway I’m thinking of you – I guess things will only get easier…? here’s hoping that’s the case.
Thank you for such a considered and lovely comment. I think that things can only get easier, yes. As long as those blasted fractures stay away. I’m incredibly lucky really, other parents put up with ten times this and more and retain an air of non-ranting dignity. Yet again, I watch in awe!
What gorgeous pictures! I’m certain that in the first instance people, like that shop lady, see a beautiful, beguiling little face before they start to wonder about the feet. I remember a disabled student at university who staggered about with crutches on improbably bowed legs. His best friend used to call him, affectionately, Cripple and make jokes about his condition that appalled me. But the disabled man told me this joshing was a blessed relief – made him feel normal – because he felt so diminished by the pity, spoken or unspoken, that everyone else felt.
I can understand that. It’s funny, I think I’m ultra sensitive about it, because I’m her mother, and I’m tired and anxious and juggling lots and trying to put a brave and happy face on it. But I think I’m also soaking up all the stuff that runs off her, because she’s so little and doesn’t understand any of it yet. Sometimes I feel like a cornered lion, so protective of my cub. The roaring and the anger doesn’t suit me, I hope I grow out of it soon!
Oh Molly,
Personally I think it is totally normal to not walk at two, I also like your dads Arse so sometimes my thoughts are not rational.
I think we become very conscious of our child’s disability, I explain libs cast before people see it, when people talk to her I answer saying she doesn’t speak3 yet she has delayed language. I am a bit silly.
Frog is a bundle of personality and she doesnt need to walk to shine (or to throw a paddy)
Ignore the odds one who do stare inappropriately and chat freely to those who are interested. Talk to other children they only see a playmate or a potential toy thief their eyes work different to grown UPS.
And stop teaching her to count, libs can say two!
If all else fails bring her to mine they can crawl together and we can drink gin
X
You are a lovely and treasured friend Jane. And so wise. x
This reminds me of when I bought Smidge out of hospital and people would stare at my four and a half pound baby and say ‘awww….there’s a tiny one! she’s not very old is she?’ and then i’d have to say… ‘well actually, she’s five months’ and watch their faces drop. then next would come the questions and….. *yawn* the stories about someone’s friend who knew someone who had brother who had a baby born that size blah blah blah…
With hind site, i think i would have spared myself a lot of the ignorant attitudes if i’d just said as little as possible but then the stubborn and angry side of me wanted to challenge these perspectives and make people see that just like you, i was extremely proud of my daughter.xxx
It’s so hard isn’t it – I know half the time people are just curious and interested. They don’t mean any harm. But it’s the relentlessness of having to explain that gets to me after a while.
Ah, everybody has a rant from time to time, even those mums with ‘super-average’ children. It’s good to get it off your chest, and doesn’t really matter who’s in the line of fire if they say the wrong thing at the wrong time… they’ll get over it! It’s so true that other children don’t really see the differences like adults do, especially if they learn to grow up with differences all about them. As mums we all worry far too much; it comes as part of the job. Sure Frog is happy and that’s what counts, right?! Oh and Take That are NOT a silly crush. They are the best band in the world.
You’re so right – kids DON’T notice. And yes, that’s the most important thing. x
Amazing-keep doing what you are doing lady. What an amazing mother you are. Vx
I didn’t feel like it last night – smothered in sudocrem and snot, chasing my daughter around the house trying to get her in the bath! Standard. x
I think I might say something like ” No, but look how gorgeous she is!” (‘Cos she is) That’d stop them in their tracks.
Not easy and in your shoes I’d probably feel the same. But in their shoes I’d feel like I was showing an interest and then I’d be embarrassed that I asked, not from pity, but because I would know it was bound to have annoyed you. There’s no easy answer is there?
That’s a really good point – that people are just wanting to show an interest. I think I’m probably guilty of being a tad over-sensitive about it at times.
It strikes me that for those of us who read your blog, hearing about F’s “condition” does not at all colour our perception of her. I’m sure the same will be true of any actively interested in her and in you. The rest simply aren’t worth the energy.
Yet again, you are so wise Adele. Thank you. x
Your post made me quite sad, its so awful to see your children being prejudiced. I like you am a white, woman and had never experienced such negativity…. until my children were bullied at school for being half chinese.
http://www.mummy-tips.com/2010/06/shocked-to-core.html
Your daughter is a ray of light. xx
This makes me so sad. Thank you so much for sharing. And thank you for the comments about my daughter – although she’s not so much of a ray of light when she’s trying to delay bath and bedtime! x
I am feeling exactly the same as you but for the opposite reason, where your child can’t walk but talks beautifully, mine at 22 months has been walking since the week after she turned one but I get a lot of people telling me “She doesn’t say much, does she?”. I get so angry, she flipping understands two languages at 22 months, she says a few words, she may only say the English or the Spanish word but knows the meaning of both, and you can see her taking in all in with great determination for when she is ready to blurt it all out. She also already has her mother’s stubbornness so she will do just fine. I just tell everyone she is bilingual and bilingual kids can take longer to talk. But I feel my blood boiling sometimes.
As Adele wisely says above, it’s people who don’t know you or her well, passers-by, people who are not important in your life. Those who matter will take time to observe how brilliant she is in every respect.
I went through the badge stage already when I wasn’t able to breastfeed, I consider sticking something from my changing bag saying: “Mummy wasn’t able to produce milk but she tried, she really tried, now she just wants me to be healthy!.
I may do an “I understand 2 languages already, how about you?”.
Ppl aren’t good about anything different. My son didn’t speak til he was three, we used signs. That was different, but most of the time it doesn’t show. I’m half deaf, that doesn’t show. We home educate, that mostly doesn’t show. But let anyone get hold of any part of it and I get the third degree, and sometimes I do just want to tell ppl where to go. Hang in there, your daughter is beautiful and you love her, that’s what counts.
I have just the comment for those who make pitying comments and don’t see my gorgeous girl, but I don’t think it could be printed. Just in case you can’t work it out it begins with f and ends with off…..Don’t let NLM see this as he already knows his ma in law has a “toilet mouth”, how quaint! love ma x
Trample all over it does it for me! (your words) X
Nice point!
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Hi Molly – Your little girl is beautiful. My 19 month old is not walking yet either and loads of people ask me about it. .One lady suggested it was my fault for carrying her all the time!!! She has been checked by the doctor and all her blood tests are clear, her muscle tone is good and she is fine with all her other milestones and saying a lot of words. She is going to start physiotherapy soon as they said she is hypermobile but didn’t really explain what that is/means. She doesn’t like to stand up at all and ‘walks’ on her knees or crawls.
I know exactly how you feel, though I doubt that will be much consolation. It’s a very tricky time (or at least that’s the way I found it) but it does pass, I promise you. You’ll probably find physio really helps your daughter and it’s great that you’re on the list and able to get it so early. F was two by the time she started hers properly and the wait was quite frustrating – for both of us. Have you contacted the Hypermobility Syndrome Association? They have some fantastic advice and support for parents. It’s still a relatively unknown condition and you’ll have to grit your teeth and ignore the ignorant comments people make about it. Many simply don’t understand!