A phonecall this afternoon:
Hi, I’m calling about your appointment on the 19th?
Yes?
It’s been cancelled. He needs to see a Paediatric Opthamologist, not the regular one.
I think: You knew how old he was when this appointment was booked. You knew he was a baby, why all of a sudden did you realise the need for a Paeds Specialist?
I say: Oh, okay. That’s fine.
It doesn’t matter, we still have to go into the hospital that day anyway, both children are having blood tests to test for the gene that causes Coeliacs. A minor annoyance, compared to the Ehlers Danlos Syndrome, but one they want to follow up with.
A letter in the mail:
When I first saw Isaac, he was sitting at the 10th percentile for gross motor development.
That number, 10th percentile kicks me in the guts. I knew he was delayed, but 10th percentile?
Since then, he is crawling and pulling to standing. He is now at the 30th percentile for gross motor skills.
30th, I think, that’s better, right? It could be worse.
Then I kick myself for thinking that it could be worse, because for some people, it is worse. Some children are off the charts, never to fall back on them again. Some children are at the 1st, 5th, 10th percentile still.
I was warned that both children would be slow with their gross motor skills. I know that Amy was, I watched Isaac lag behind his peers also. It didn’t bother me, knowing that walking would be late, that things were going to be a little harder for them.
Seeing it on paper however, 10th percentile, 30th percentile, even as I tell myself that the numbers mean nothing, that hurts. Because on paper, all they are is a number. No one sees how well Amy talks, or how Isaac is clever and works out how to do things differently, that he is determined and that she is amazing. They’re just a number somewhere, a statistic.
Traversing the realm of doctors and genetic testing and blood tests and physio is harder than it sounds. It’s a stretch of my already limited energy, but it’s something that needs doing. They need the physiotherapy and the follow-up care and the specialists.
And I’m grateful, I truly am.
I’m grateful for a diagnosis, I’m grateful for the Australian Medical System, that means this, all of this, it costs me nothing. I’m not likely to go bankrupt providing the children the care they need.
I’m grateful for the quality of care we are receiving, even when not enough is taught about EDS in med school.
But sometimes, I wish that the children didn’t have to be just a statistic. Even if that statistic is, in my opinion, deeply flawed.
Okay, I have to delete my comment and go look at your older posts, because I could SWEAR you had pictures of Isaac standing a couple of months ago and he’s just now turning one, right? I swear I thought he was much more mobile than either of my kids, who didn’t roll until after 9 months and didn’t walk until 14-15 months.
Delayed? by who’s standards??????
He started pulling to standing a while back, and he’s been rolling over for months. I think it’s his poor muscle tone and his general floppiness (plus his tendency to just go FLOOMP and collapse) that made up the percentiles as well.
And then there is the other side of the coin, those people that choose not to see how difficult EDS makes your lives.The pretending that EDS is a made up thing and that it surely cant be that bad is what gives me the absolute fucking shits.
Coeliacs is a walk in the park compared to EDS.
Yes, that’s the other side of it. The ones who assume that because I can smile about it, that it’s no big deal and not worth worrying about.
Hugs.
Somedays I think it’s all hard. Lucky they have you as their Mum, a person who truly understands because you live it every day. You are the best advocate there is.
As for the numbers, I know it is like a slap in the face
but even the doctors say those numbers are flawed. not that that makes anything easier or better.
Stupid numbers can’t change the fact that they are gorgeous and amazing little people.
Ok i know I said I wasn’t commenting but can’t help it and am doing it with one eye shut so please forgive both spelling and grammar and all htat crap.
Scuse my language but bollocks to the percentile stuff. In my humble opinion Isaac is doing really well, as his muscles get stronger his flopping down again will get better, especially if he swims. If this helps my non EDS son, failed his cycling proficiency test and yet he can ski really well – so there to that milestone. He doesn’t have EDS apparently!! although not actually seen the Professor man who knows about these things as he doesn’t present as very bendy but apparently his elbows are but they are not on the scale that defines EDS so thats of no consequence. He is floppy was born floppy but apparently thats the dispraxia or they say now possibly the epilepsy. He can’t write to save his life and thats fine motor skills – daughter with EDS was all over the place with milestones but she can write really well just in a very bendy way and it hurts. So I say – bollocks to milestones – throw away that chart and the labelling that goes with it. My left handed husband still puts his clothes on back to front and other bizzarre stuff – I haven’t met half my milestones and I am 45 I am reliably told by my family which is a shock as I thought I was far younger!! Don’t worry and just look at your lovely lovely children. The thing is with us EDSers is we are born fighters – we adapt – if our milestones aren’t quite right we make up for it in other ways. Veronica I look fine with my invisible EDS too. Although I must admit in photo’s I do look really floppy.
Bollocks to the milestones. I agree EDS is not a walk in the park by any stretch of the imagination. But that milestone stuff is labelling I can’t stand.
Can you tell I am not in a very good mood about EDS today.
Big virtual hugs to you Veronica and truly – milestones who f’ing invented them in the first place. Some sad git I think.
Veronica, Your children are as amazing as you are! They are thriving under special circumstances! The drs only have standardized tests to use to evalulate ALL kids – not the ones who live outside of their box! As long as your kids are happy and proud of themselves – God knows they know how MUCH they are loved! – they are going to be awesome adults with so much to give along their journey of life… please don’t be hurt by the standardized testing, unfortunately it won’t be the last one of those! My 11 yo grandson, Leavi, who I have been raising since he was 18mos, was classified as a slow reader at school. He went to remedial reading classes (I figured it couldn’t hurt) and was still slow by their standards. I told them I was not worried about it because his comprehension was good…. speed would come when he was ready. Now that he is a 6th grader, they have figured out what I have always known.
chin up 🙂
Pooh to the numbers. Isaac and Amy are amazing children and very clever too. Many kids don’t walk until 15 months anyway. When mine were little I read a baby book that told me to expect baby to start pulling up on the furniture sometime close to or soon after the first birthday. (Ha Ha.By one they’d been walking for quite some time). Books and statistics mean nothing or very little as far as I’m concerned. Babies developments vary so wildly I’m surprised they can be charted.
Challenges or not, they are beautiful, adorable and charming blessings. And you’re a GREAT Mom!!!
I had no idea they had things were this difficult for the children! Wow!
No, I don’t think you rose-coloured it; I think maybe I just didn’t see it. Hm.
You know, this kind of annoys me actually. I really believe that in most situations waving percentile rankings in a parents face is pretty pointless. It used to be the done thing but these days many health professionals try and steer clear of it because it can be so distressing, misleading and also subject to such dramatic change. This is especially true in areas like gross motor milestones which are so variable.There are much more constructive ways of demonstrating to parents how a child is developing. Between clinicians percentile rankings can be useful but they should remain in a clinical setting. Rant over.
It’s all a load of piffle.
My eldest walked at 5 months, 2nd walked at 14 months and geek child just ran everywhere.
Every kid is different and the numbers mean jack shyte 😉
girl, I know.
I know.
Hugs for you babe.
(and Boo couldn’t sit up unaided until he started getting physio WHEN HE WAS FREAKING FIVE ARRRRRGGGGHHHH and now you wouldn’t even know. You got em in early babe.)
The thing about milestones and numbers…they are averages and baselines. They are a shortcut and a tool for doctors, who don’t get to watch kids from day to day, and who meet endless mothers who all think their kids are exceptional. (Because they are. But not in medically relevant ways, perhaps.) They can help identify children who might need more help or have issues. And it’s a starting point. That Isaac was at the 10th percentile and has moved up to the 30th means he is growing and improving and doing great. That it may be taking him longer, or that he is taking a different path, than average kids, means nothing. You are not an average or ordinary person, and so you could never have an average kid.
The sad reality is that we all tend to be statistics and numbers and charts to doctors, because they don’t have the time or the luxury to get to know each patient. And, honestly, to protect themselves. They cannot get wrapped up in each person they see, they have to have that disconnect, or it will burn them out. My very good friend worked with kids that were institutionalized for mental health issues, and she eventually had to move on to another field of psychology. She just got burned out on the tragedies and the sad stories and the terrible realities for these kids.
I think instead of seeing Isaac as at the 30th percentile, you should focus on the fact that he has improved according to their charts. It doesn’t matter that he started out at the 10th. Just gives him more room to grow.
It is harder than it sounds.
I had a brief experience with this with my daughter – we have dislocated hips in the family and she was diagnosed with it at birth but fortuntely she outgrew it.
It was a hard year for me 🙁
Strength to you and the little ones who have to go through it all too!
We discharge from speech here at 16th percentile as it’s considered to be in the average range, 1 standard deviation…
Don’t pay attention to the ‘statistics’ – they’re bollocks. Your children are clever, and beautiful, and we all know it. Fuck the doctors. *hugs* xx
Oh darling nobody wants that for their children.
If it helps I didn’t notice anything different when I came up to visit. Emily and Isaac played on the floor happily. Amy and Jordon played outside. They are beautiful children. It’s going to be one of these things that you will be teaching your children how to cope with, and trying not to make a big deal out of it, or single them out but all the while helping them.
I know you can do that for them and so will Nat and your families.
I think yesteray I may have gone from the 10th percentile to the 90th percentile in ability to walk for someone my age. It was weird, by 3:30 this morning I was walking better than I have in months… But I had to go to bed, so I got to start from scratch today again.
stupid percentiles.
‘There are lies, damned, lies and there are statistics!’ I think percentiles fall into the same category.
Your children are happy and loved, they are achieving everything at their own pace and that is ALL that matters.
I tell myself it’s ‘good to be different’ … who wants their child to be the same as every other boring kid?? But then sometimes when ‘different’ means a lower score or a worrying ‘thing’… sometimes we’d be so darn happy with normal boringly average! *hugs*
I pretty much want to say what Marilyn said. Word for word in fact.
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