Now there’s a fairly unusual blog title – bet you won’t find anyone posting on that this evening….

Every week the Cheetah Keeper gets homework on a Friday to be handed in, ideally on the following Monday (but you have until Thursday really).  I could ramble at length on the pros and cons of giving 5-6 year old children homework and how, especially nearing the end of term, you kind of get the impression that homework is being set because something has to be set rather than shocker of shockers, giving the children a week off when there isn’t actually anything useful to set.  Oh, and please don’t get me started on the “find how many little words you can make from the word Christmas Celebrations” homework as that is clearly a test of parental skill, not that of the child.

Anyway, this week the Cheetah Keeper and his class have been learning about capacity and measuring liquids.  Millilitres and Litres that kind of stuff – ideal on those hot summer days (ahem) when the class can be outside measuring with water.  Hmmm.  The Cheetah Keeper has been quite taken with this concept and was asked, for his homework, to find things at home, draw them and show how much their held, in mls or litres.

When it came to it though, the Cheetah Keeper looked around the kitchen for things that you measured liquids in and was drawn to the one thing he knows best.  Syringes and medicine.  Not the ketchup, or the washing up liquid, or the squash or the measuring jugs we use for baking – no, the two things that are the most constant and most likely to have your mother falling to pieces inside as you mention it.

It ticked every single box of the homework, he loved it because nobody else had done what he had.  He carefully drew the brown medicine bottle and labelled it with the carefully copied name.  He willingly wrote it all down (this is unusual, writing is hard).  Then we went around the kitchen, collected up some syringes that we don’t use any more (too small) and carefully sellotaped them to the homework.  He was thrilled and presented his “3D homework” with the greatest pride this morning.

All while his mother crumbled inside but enthused as he’d done his homework, with enthusiasm about something that is special to him, but his mother wishes she could make disappear for ever.

The post Capacity Homework appeared first on Cheetahs In My Shoes.

This Ranty Friday thing is becoming to be a bit of a habit – maybe it’s not healthy spending the week going “oh that really annoyed me, I’ll blog it on Friday” – maybe I should spend more time looking for frolicking unicorns or indeed what special offer is on Malteasers this week.  After more than 9 months of recurrent chest infections, sinusitis, strep throat and major surgery, my tolerance levels are low.  By low I mean barely scraping above zero tolerance of most things.  This is progress – last week I had no tolerance at all and if I’d been back running Brownies last Thursday, Tawny Owl (yes, I am) may have swooped down and torn apart some unsuspecting child more doing anything more than breathing.  Progress is being made.

Moving on…

Two weeks ago (is that all???) we were enjoying the sunshine at the National Trust property that is Beningbrough Hall, just north of York.  That big yellow round thing in the sky that makes it all warm was out (don’t think I’ve seen it since), we’d had a lovely picnic, the activities for the children were great, we’d been made to feel incredibly welcome and it was, well lovely.  Looking up at cherry blossom with blue sky is a proper ‘warm your cockles’ moment

The Hall itself is currently home to a large collection of the portraits from the National Portrait Gallery in London.  No photography allowed but suffice to say it’s pretty amazing – although the children were most confused by why the men had such big wigs and funny hairstyles.

The whole site at Beningbrough is wonderfully accessible – as much as the Cheetah Keeper is fully mobile and can walk, when he puts his mind to it, a fair old distance, he finds new places with uneven surfaces stressful and hard work.  Beningbrough is probably the best National Trust property that we’ve been to so far for getting around when you have a small boy who isn’t keen on stairs – especially going down them.

As part of his physio (and general well-being) we try and get him to do as many stairs as we can when we’re out and about.  However, if a lift is available, I am not adverse to diving into it – either to avoid him getting over tired, stressed or kicking off.  He’d made huge progress with stairs in half term – for the first time ever going downstairs one foot after the other – admittedly with one hand on the banister and the other in mine but he did it.   So we big him up when he does it – masses of praise, high fives the whole lot.   It has taken so long to reach this stage, I don’t want him to think it hasn’t been noticed.

But what was noticed more was us praising him so much – and people give you funny looks, hence the title of this post being “Jumping to Conclusions”.  It really annoys me that people feel it is perfectly acceptable to shoot sideways, quizzical and disapproving looks at me as I praise my child for a monumental achievement.  That look of “he’s just walked down a flight of stairs, why the @*@* are you praising him like that?”.  I am praising my child for doing something that I know is incredibly difficult for him – get over it please.  It does not, as far as I’m aware, make me a bad parent.  I am not causing offence, a public nuisance or committing a crime.   I may have been guilty of being a little over emotional and we may have slowed the people behind us down a little, but really, there wasn’t a great deal else to accuse me of.

This breakthrough had been made at York Castle Museum the day before we went to Beningbrough.  The Cheetah Keeper had been really worn out by it and as soon as we’d arrived he’d fallen in the carpark, split his elbow and bled everywhere.  It had taken a huge amount out of him and despite two long(ish) car journeys he wasn’t quite back up to full speed.

The displays at Beningbrough are over 3 floors and the Cheetah Keeper got his head down and climbed (one foot after the other again which he finds really hard) both flights of the servants stairs to reach the top of the house.  The main staircase has much shallower steps but to preserve the beautiful parquet floor they’re not open to the public.   The views from the top of the house are gorgeous but somehow you have to get down, so we used…

are you ready for this…

really….?

the lift.

To ensure that my tired boy who had achieved so much in the past 48 hours didn’t hold up too many other visitors, fall or get overly stressed out and tired going down those stairs again.

Radical huh?

The looks we got from other visitors (more mature I may add) for using the lift were soul destroying.  The flaming daggers being shot in my direction for using a facility that was open to everyone, with a child who looks completely normal were horrid.  It’s nothing new.  Shocker of shockers I often park in the Parent & Child spaces in Sainsburys with my 8 and 6 year old children (spaces are for parents with children up to 12 years old) who happen to be much taller than the average child.  Not only are they children, the Cheetah Keeper finds it hard to get in and out of the car without the door fully open – how much do you value your paintwork other driver?

I admit to throwing a ‘look’ in the direction of someone parking in one of those spaces without children at all, or nipping into a disabled space so  they don’t have to walk as far in the rain.   Those spaces are there for a reason, and my kids, despite their size, are one of those reasons.

I digress (as usual).  Back to the National Trust.  I want to make it really clear that this was not a member of National Trust staff or a volunteer who was so disparaging, however, if they want to remind their staff that some medical problems don’t show they’re more than welcome.  The team at Beningbrough were absolutely delightful and I thank them for that.  What I do want to say is that all sorts of medical problems don’t show, just because you see something that looks a bit odd, doesn’t mean you should jump to conclusions without finding out the true facts.

The post Jumping to Conclusions appeared first on Cheetahs In My Shoes.

May Half Term brought a much needed break as the Cheetahs, their Keeper, his sister and his parents headed up to the Haven holiday park at Reighton Sands which is just into North Yorkshire on the coast.  The Sealion Keeper had been counting the days since her birthday and had been wanting to pack for a good 3 weeks before we went, despite the small detail of it being her brother’s birthday in between.  The Cheetahs had been rather excited about getting away and the prospect of running on a beach, especially little SpagBol and his new friends the (imaginary, obviously) Owlies.

I suspect it’s the mixture of excitement and uncertainty that brings the Cheetahs out in such fine form but they certainly had a good run along the white lines of the M1 and resorted back to all their old tricks that first came to light almost 3 years ago.  The Owlies tend to prefer perching on shoulders and hiding in pockets (burrowing owl tendencies I suspect) and don’t seem to be as confident on the motorway network, clearly.

We’ve stayed at Haven parks before, each time thinking that it will probably be our last as the children grow older and become more aware that Rory the Tiger is in fact someone in a costume (sorry, have I shattered an illusion?).  Then we mention it as a holiday idea and the children beg us to go back.  They love it, they love Rory the Tiger, Anxious the Elephant (who seemed this year to have overcome a fair few of her confidence issues), Bradley Bear, Greedy Gorilla, Naughty Ned and Polly.  They love going to the character shows in the evening, the love having a swimming pool on site, they thoroughly enjoy the sporting activities and they love the fresh air and the seaside.  We’re getting pretty good at the packing process, how we manage the self catering aspect and how we plan our days.  It’s good and although I crave some proper sunshine, our trips around the Haven parks have shown us some of the most beautiful parts of this country – and there are many.

Back to the Cheetahs – they, as ever, do like staying in a caravan.  Especially one with lots of cupboards to hide in and space outside to run around but not be too far away.  They also really, really love the beach.  Running on the beach is apparently even better than running on the motorway – and when the beach is long, sandy and pretty empty you can’t really blame them.  They’ve also taken up surfing.

Spot the Cheetah

The waves on Reighton Sands are the biggest that the Sealion and Cheetah Keepers have ever come across.  Not huge by any means but the North Sea rolling in produced some decent surf.  The Sealion Keeper would go in the sea even if she had to break the ice and was in within minutes…

Our investment in wetsuits for the children has been worth every penny (ebay…) and she was quite happy throwing herself around in the water for at least an hour.  The Cheetah Keeper is slightly more wary (and certainly feels the cold far more than his sister) so plays in the shallows – although remaining upright is sometimes a bit of a challenge…

The Owlies do like flying around on the beach – although I think steered well clear of the cliff at the end.  Bempton Cliffs are an RSPB reserve and home to gannets, razorbills, puffins, herring gulls and all sorts of other nesting sea birds at this time of the year.  The white dots on the picture below are not your screen good reader, they are all birds… (more pictures over on my photo blog)

It seems the Cheetahs (except the oh so loyal SpagBol – maybe he doesn’t like flying?) have had to go on holiday again today as it’s just not nice or warm enough for them here (subtle Cheetah Keeper… as a brick) so the Owlies are here for now – most of them apparently in my fleece pocket today because it’s warmer for them there.  Oh, and they might like a sandwich at lunchtime.

We’re off to Devon in the summer – I wonder what the Cheetahs will think of the beach and surfing opportunities there?

Just to make this really clear, this is not a sponsored post – we just really like Haven holidays and had a jolly fine time at Reighton Sands.

The post The Cheetahs go to Reighton Sands appeared first on Cheetahs In My Shoes.

This week I received a parcel from Hotter Shoes with a beautiful pair of their Goretex Trek Boots to review.  These ones to be exact

Now, it being June, I was a bit doubtful whether I’d get a chance to give them a good try out, seeming as it’s the *ahem* summer and it’s supposed to be warm *nudges the weather as a reminder*.  So, today, being the 9th of June the temperature had reached the dizzy heights of 14C by lunchtime and with it being Open Farm Day it seemed an ideal chance to don the boots, get out there and give them a go.

Last year we’d been out to Annables Farm and had a lovely day there.  This year it seems many more farms have opened their doors, including our very local one, linked to Oaklands College here in St Albans.  Oddly enough, it’s Oaklands Farm.  I used to go to the “Oaklands Open Day” as a child (I’m talking 30ish years ago) and it seemed a lovely opportunity to get the Cheetah Keeper & Sealion Keeper outside even if it wasn’t too hot and possibly indulge in a nostalgic tractor and trailer ride.

The college and farm had embraced the whole Open Farm Day concept and mixed it (with a splash of entrepreneurship) with their summer fayre.  I was however determined that this was not to be a day of being begged to go on bouncy castles and merry-go-rounds, and this determination was not at all necessary anyway – first thing the children asked was to go and see the animal and the ‘real farm’ bit.

So the boots got a trip across a field, down a road and then into the equine area.  We then watching the show jumping display which captivated the children – they have fond memories of seeing the equestrian events at the Paralympics.  On my feet for 45 minutes in the new boots was a good test – they were very comfy.  Good start.

The children then (for a donation to Riding for the Disabled) got to have a go on a pony.  They loved it.  I welled up.  I’ll post more about that soon.  The boots got to go in the riding ring which was made of I have no idea what – my feet were dry and that was good.  We spent nearly 3 hours exploring the farm, visiting the animals and enjoying the stalls.  No request at all for bouncy castles.  The children can’t decide which animal they liked seeing best – and with a choice of pigs, alpacas, chickens, ducks, geese, peacocks, sheep, cows, horses, rabbits, guinea pigs and exotics to choose from I can understand why.  I really thought that the Cheetah Keeper was going to be scared but he relished every moment.

Lamb at Oaklands Farm Open Farm Sunday 2013

Lamb at Open Farm Sunday at Oaklands Farm St Albans photo by http://cheetahsinmyshoes.com

Peacock at Oaklands Farm

Peacock at Oaklands Farm St Albans. Open Farm Sunday 2013 photo by http://cheetahsinmyshoes.com

Bee Keeper at Oaklands Farm

Bee Keeper at Open Farm Sunday 2013 at Oaklands Farm St Albans. Photo by http://cheetahsinmyshoes.com

Train Ride Oaklands Farm

Train Rides at Oaklands Farm St Albans. Open Farm Sunday 2013 photo by http://cheetahsinmyshoes.com

European Eagle Owl at Open Farm Sunday Oaklands Farm

European Eagle Owl at Oaklands Farm St Albans. Open Farm Sunday 2013 http://cheetahsinmyshoes.com

Pony Rides at Oaklands Farm

Pony Rides at Open Farm Sunday 2013. Oaklands Farm St Albans http://cheetahsinmyshoes.com

Hotter Trek Boots in CherryBerry

Hotter Trek Boots in CherryBerry from Hotter Shoes

Horse Jumping at Oaklands Farm

Show jumping demonstration at Open Farm Sunday Oaklands Farm St Albans. Photo by http://cheetahsinmyshoes.com

Grey Horse at Oaklands Farm

Equine Centre at Oaklands College & Farm. Open Farm Sunday 2013 photo by http://cheetahsinmyshoes.com

All in all a top afternoon out.  The boots from Hotter were brilliant – and for me, Mrs Picky Shoe lady, that is a complement.  I’d ordered a larger size than my feet actually are to accommodate my orthotic insoles – it’s my usual tactic and it worked beautifully.  My feet were comfortable, they weren’t too hot and my daughter wants some.  I’m quite prepared to pay a bit more for comfortable shoes that fit and these would come under that heading – I’m really looking forward to going out on some of our National Trust adventures (read about them on my photography blog Just Photos By Me) in them as I could have really done with them when we were away in Yorkshire for half term.  Long live the inclement weather!

Disclosure.  As I’ve said, the boots were sent to me by Hotter to review.  They are available from the Hotter website for £110.  Our trip to Open Farm Sunday was just a really good chance to try them out.

You can read how another Jennifer from Jennifer’s Little World got on at her local Open Farm Sunday here and how Joanne got on here.  You can follow Open Farm Sunday on twitter @openfarmsunday

The post Open Farm Sunday 2013 with Hotter Shoes appeared first on Cheetahs In My Shoes.

It’s Friday – it’s Ranty Friday with Mummy Barrow and this week I’m posting on behalf of my mother (shocking, I know..)

Picture this, you’ve ambled into a shop, not a supermarket or any other shop the size of a small county and you’re having a mooch around.  Potentially eyeing up the next absolutely ‘must have’ gadget that you’re saving for or indeed on the hunt for a particular product that you know this particular retailer stocks.

You’re happily going on your way – possibly even in the right direction and you are yet to get to the point where steam is coming out your ears because you can’t find what you’re looking for.

And then…

A trained within an inch of their lives well meaning store ‘colleague’ comes up to you, and in that slightly rising in tone at the end of the sentence way says the dreaded words…

Are you alright there?

Your options are limited….

Firstly, you can’t really ignore them – maybe a brief nod will suffice but it’s one of those questions we’re programmed to respond to…

Secondly, if you say “yes thank you” you’re essentially ending the conversation (woohoo) which is exactly what you want but the store ‘colleague’ doesn’t want (or has been told/trained not to want).  There’s going to be more to this conversation and even though you’re ok, there’s going to be that awkward “well if you do need any help, I’ll be just *here*” conversation which makes you think that they’re watching you and actually you’d rather shop in peace…

Or thirdly, you’ve got the trump card, the “well actually I’m not” reply.  This generally confuses said colleague who is so used to being fobbed off or ignored that they don’t quite know what to do next (laugh to yourself at this point).

You’ve got to choose your tone – do you say “No!” and strop off in a flounce or do you say “no” and wait for the engagement that the colleague so desperately wants to make in order to show that they’re meeting their targets and are following their training programme to the letter and therefore lay your self open to ‘help’.  You’ve also got the “no I’m not alright here” reply (the slight rise at the end of the sentence is compulsory, obvs) which always baffles a newly employed teenager.

I’m making this more into a sport now, not what my mother wanted in terms of a rant.  She’s all for the highest possible quality customer service – she agrees the “do you need any help?” or “is there anything I can help you with today?” questions are creating a negative response in the shop which isn’t great.  Digressing a little – it always crosses my mind to say, “well actually, there is something you could help with, can you pick up the prescriptions, collect the kids, get 4 pints of semi skimmed and drop everything back at my house while I shop?” but I’m not sure that would help.

Anyway, if you have to reply ‘”no” to a question you’re making yourself look silly, vulnerable, stupid, nagged or confrontational.  By saying “no” you’re highlighting that whatever is going on in that shop isn’t easy to understand or find and actually you’re pretty bloody stressed it all.  Not exactly a positive experience.  “No” is not a good start to a conversation where someone then has to find out how you need there help.  You’re instantly on the defensive (not wanting to looking silly/vulnerable/stupid etc) and your tolerance to how the situation is resolved is lowered.  Great customer service isn’t about asking the same question time and time again, it’s about reading a situation and responding to it.

Rant over – are you alright there?

The post Are you alright there? appeared first on Cheetahs In My Shoes.

As you will have understood if you’ve read my other posts about Ehlers Danlos Syndrome, I’m not a medic.  I am someone who has Ehlers Danlos Syndrome and as such have set about to find out as much as possible as I can about what it does to my body and to the bodies of my children.  So I’m going to try and answer a few questions about the Syndrome, hopefully in a way that you’ll understand.

First of all, what is Ehlers Danlos Syndrome?

There are actually several types of Ehlers Danlos Syndrome – they are categorised by Roman Numerals.  It’s also been called “Benign Joint Hypermobility Syndrome” although the term Benign is seen as somewhat strange by many people with the syndrome.  It’s not cancerous but is certainly doesn’t mean it sits there having no effect on the body.

All types of EDS are genetic conditions – something in our DNA isn’t quite right.  There are great amounts of research going into the genetics here in the UK at the moment and I suspect over time, more and more types of EDS will be discovered – or may even be given different syndrome names.

I have EDS Type III with a genetic Type IV marker.  I say that as if I know what it means… essentially in means that my EDS is atypical, I have the symptoms of one type with a genetic fault indicating another.  It’s up to the research team to work out exactly what that means and they have my DNA samples to work with.

What is affected by the genetic problem?

In EDS, the ‘faulty’ gene affects our connective tissue and the collagen within it.  In some cases it means that you have a ‘normal’ amount of collagen but it’s poor quality and in others you have far less collagen that normal.  Collagen helps hold everything together and if it’s not good quality or lacking, things become more lax (bendy).  This isn’t limited to joints, it includes anything that has connective tissue in it – skin, blood vessels, muscles – all sorts.

The main thing that I want to emphasise is that everyone with EDS has it in a slightly different way.  The symptoms we have all vary – the effect of that genetic malfunction is working with an individuals genetic make-up that has formed through the generations.  Put us all together and we’ll certainly empathise with each other and share a fair few symptoms, but everyone will have their own particular presentation of the condition.

So it’s Hypermobility then?

I believe that there is a real difference between hypermobility and EDS and how I explain it is this:

Hypermobility is the ability to extend joints further than they would ‘normally’ go with no pain and possible with beneficial effects – for example most gymnasts and dancers are hypermobile and that’s how they reach the heights of success.  Repeated hypermobilising of their joints may not do them much good in the long run (for example, it may be linked to arthritis) but there are no symptoms of pain or malfunction at the time.

EDS may bring similar degrees of hypermobility in some joints but it seems is found in so many other places in the body too.  It comes with other symptoms, often pain, fatigue and other related medical issues (that I’m not going to go into here).  I suspect that the geneticists will find many more links with EDS and already recognised diseases and conditions in the future – time will tell.  EDS is something that has a full on, and often detrimental effect on every day life.

Having spoken to others on an EDS Facebook group, something that echoed time and time again is that with EDS it is not “just” hypermobility and being double jointed.  It is a complex, unpredictable group of conditions of which relatively little is known and is completely and utterly real.

Can you fix it?

In a word, no.  At the moment (and I suspect for a long time to come) fixing a genetic problem is not possible.  People with EDS may present with conditions that others recognise in themselves or have seen in others and that have been ‘fixed’ with surgery, drugs or otherwise.   The ‘miracle’ surgical cure that has resolved a ‘dodgy’ knee or repaired a joint after an accident isn’t necessarily an option with EDS.  Surgery has its place (for example my recent Ulnar Nerve Transposition) but it will not resolve long standing laxity or repeated dislocations.  Not only that, those with EDS tend to scar badly (and those scars can stretch) so in the long term the mixture of anaesthetic, scarring and the required rest after surgery can do more harm than good.

Drug treatments can make life easier, but in many cases, painkillers do not work in the same way as they do in people who don’t have EDS.  There is a thought that our bodies process the drugs far too quickly and they just don’t get a chance to do their job.  Long term use of drugs to manage pain is an incredibly difficult balance to strike for both the person taking them and those prescribing.  Alternative treatments may offer some relief but again, when you’re dealing with something that is caused by a problem with DNA it’s not at all straightforward.  Things that relieve some symptoms (for example painkillers) may aggravate other problems (for example gastro ones) so it’s never an easy “just take xxx” process.

What (not) to say to someone with EDS

Those with a diagnosis (or a potential diagnosis) of EDS will have probably been experiencing symptoms for some time.  It is not a condition we would wish on anyone; it is painful, often debilitating, life changing, worrying, exhausting and all encompassing.  It is not something that is made up nor created for attention – please don’t imply that it has been.  Thanks.

Although those with EDS can get their bodies into all sorts of odd shapes, being asked to do ‘party tricks’ to order isn’t a favourite thing!

The normal human response to empathise with someone in a difficult situation can be easily misinterpreted – “oh I’m hypermobile too” is not necessarily a helpful comment, neither is “oh, can’t you have it fixed” or “oh my friend had that and took this and it got better…”.  EDS is not a condition that will ‘get better’.

‘Rest’ is not necessarily a good thing for those with EDS – resting makes our already lax connective tissue (muscles) even more bendy.  Keeping going may be painful but the better of the two options.   In many cases, taking to bed would seem a wonderful idea, but would do more harm than good.  It’s a balance – one that we have to master and we may not get it right, but please don’t rub it in!

You don’t have to do the thing when you tilt your head to the side and say “how are you?” like someone has died.  Nor say “oh bless” when discussing a child with the condition.  We are not dead and to be honest, will probably tell you the answer you want to hear when you ask rather than the truth.    Personally, telling me how rough I look is never a winner – however, offering me a brew should I want one is wonderful, as is feeding my kids.

Sorry if that seems a tad blunt – but that’s what it’s like.  I’m still Jenny, as sarcastic, cake loving and gin drinking (when allowed) as ever – I work, I look after my kids, I bake, I write – and I have EDS.  It’s sometimes really crap, but that’s how it goes.

I don’t know how you do it

You know what?  Neither do I.  But I don’t have a choice so I do it.  You just may find me zonked out in a corner somewhere talking rubbish every now and again or taking a 1000 photos at the zoo to take my mind off things.

So – what else would you like to know?  Ask me a question in the comments and I’ll do my best to answer it.  What is Ehlers-Danlos Syndrome?  It’s a rare condition and we don’t know enough about it yet.  Now who’s got cake?

The post What is Ehlers Danlos Syndrome? appeared first on Cheetahs In My Shoes.

Today the Sealion and Cheetah Keeper finish school for the May half term holiday.   When they return there will be a mere 7 weeks and 3 days until they complete this academic year.  As much as the beginning of 2013 has been, shall we say, “tough” for us, that time has flown and the plans for “transitioning” to the next class are beginning to bleep on my radar of “must do” jobs.  Transitioning being moving up to the next class in old money – for my two it’s about planning, explaining and implementing the changes that occur as you move to a new teacher and a new classroom.  It also requires the handover of all the medical files, details and plans.  My heart is sinking as I type – I have yet to find it the straightforward process that it suggests itself to be.

This week the Sealion Keeper made it onto the “Excellent Writing Board” for the first time.  Her name will get mentioned in the class newsletter.  She is very proud.  I am very proud.  She has made massive progress this year (although has also been having extra literacy and maths support out of school for a year and her improvement has been marked since starting that) – her writing is pretty legible, joined up most of the time and on the line.  I cannot emphasise how much of an achievement this is for her – the girl who had “failed to make any progress” between Easter in Year 1 and Easter in Year 2.  That time has passed and I have to let the bitterness that this causes me go, but it goes to show (to me at least) that with the correct input and awareness of what her Ehlers Danlos Syndrome was doing to her ability to write, she wouldn’t have essentially written off a year of her early education in terms of literacy.

She still struggles processing it all, to be able to sit, hold her pen correctly, get her other hand to hold the paper, think of the ideas, apply the grammar (the girl knows more about grammar now than I did when I got to secondary school), remember the spellings and then get it all onto the paper in the right order is often beyond her.  She has the ideas, the messages leave her head correctly but by the time they get to the paper it can all be one big jumble.  She will get there but it’s taking so much effort at the moment she can barely speak when she gets home, the exhaustion is so great.

The target in Year 3 in writing is to ‘earn’/be awarded a pen license.  This little bit of card with the child’s name on means that they have graduated from having to use a pencil for everything to being allowed to use a handwriting pen.  The criteria for the award seem to be a little hazy – but as far as I can work out are very much based on achievement.  At a recent SEN meeting I was told, at great lengths, about how important it is for the effort of a child to be recognised, over and above the achievement.  So, if on a ‘pre-test’ of spellings a child gets 1/10 and then, after a week of learning, comes back and gets 7/10, that is ‘better’ than a child who got 9/10 on the ‘pre-test’ and improved to 10/10 at the proper test.  I get that – I’m not sure the business world will, but I get it.  I can see the advantages of rewarding and praising effort – it means that once you get to the point that education does become a challenge it won’t be a crashing shock and instil feelings of failure.  Putting in 100% effort to be the best you can is a very healthy mentality.

However, if you are going to preach/deliver that ethos it needs to be consistent.  The Sealion Keeper has worked her hardest all year – she is known and loved for the amount of effort she puts in to everything.  She is so tired she has fallen every day at school for a week in the playground.  She still doesn’t have a pen license because she has not achieved the correct requirements in her writing – her additional needs and the amount of effort she is putting in have been completely ignored.  She feels a failure because she hasn’t got her pen license and is cross with herself for having the syndrome that means that she’s not in the same ‘gang’ as her friends.   That does not help me in the slightest.  She needs to accept herself for who she is, complete with Ehlers Danlos Syndrome and what it brings.  Not have the point emphasised that it makes her different.

As for the spellings, thankfully this year the ‘super spellers’ boards have been removed from the classroom windows.  Those who achieved 10/10 (or indeed 20/20) each week were on the boards as recognition of their score.  In Year 2, the Sealion Keeper would be rewarded with a treat from the teacher after a set number of 10/10 scores had been achieved.

This again, completely ignores the effort part of the equation.  When you have spellings that include ‘opaque’, ‘translucent’ ‘iridescence’  and ‘transparent’ (aged 7) and you have difficultly sequencing, writing, have speech and language issues that mean phonics has been a complete waste of time (shall I go on?) and you’re tired, getting anything out of 10 is an achievement.  To go from perhaps being able to spell 1 word to 5 words in a week is a massive achievement and yet you would never make it to be a ‘super speller’, despite working your backside off.  Is that a harsh lesson in reality or is that really not making the effort to see that not just the education but the physical and emotional well being of every child matters?

I’ve written this post to support Ehlers Danlos Awareness Month and am linking up with Mummy Barrow’s Ranty Friday too.

The post Pen Licenses and Super Spellers appeared first on Cheetahs In My Shoes.

What’s a ‘normal’ or ‘average’ day for any family?  Get up, breakfast, school/work, home, eat, bed?  With the normal essentials of washing, homework and ‘jobs’, hopefully something cool/relaxing/engaging to do in free time and generally having the chance to just ‘be’.

With 3 of us in this household with Ehlers Danlos Syndrome – Type III we don’t really have an ‘average’ day.  Yes sure, we get up, have breakfast, go upon our merry way and end up in bed at some point but the actual realities of making a day happen are a bit different.

Here’s a bit of an outline so that if you happen to see an EDS child in your classroom or a parent of an EDS child at work, or someone with EDS at work, this is what might have happened to get them where they are that day…

Firstly, for many of us (possibly most of us?) Ehlers Danlos Syndrome makes us tired.  Really tired.  You go to bed exhausted, you wake up tired.  Subsequently, essentially we are not ‘morning’ people.

We try to have a relatively gentle start to the morning, it takes to work out what joints are doing what, what hurts, where upright is.  Some days it’s easier than others, for all of us.

Getting dressed is a bit of a challenge most days.  Children with EDS can find the everyday tasks of getting things on really tricky,  Muscles that don’t do what they want them to just makes things difficult, joints that bend backwards, fingers that struggle with the fine motor skill tasks like buttons and fastenings.  Sometimes the process of getting dressed itself is so much that remembering the sequence that everything goes in becomes a massive obstacle.    For adults, it’s the fiddly bits (try doing up your bra when your fingers bend in the wrong direction) or the balance that you need to put your trousers on.    For anyone with EDS that you see dressed, they’ve probably adapted, cheated or worked their way around something that causes them pain or difficulty – or had some help.

Breakfast.  Some people with EDS will have tummy problems so their breakfast may well be tailored to suit that.  Other than that you’ve got the challenge of actually getting the food into your mouth.  It’s a combination of fine and gross motor skills – getting your spoon to the cereal, the cereal on the spoon and the spoon into your mouth is a high risk exercise.  Some with EDS will have no problems with this at all, others (and I’m talking my house here) will be wearing their cereal, will have dropped their toast and possibly spilt their drink at some point in the morning.  Most days.  School uniform is rarely spotless but as it’ll come home covered in lunch and then be covered in dinner, life is too short to change!

Getting to work/school – it all sounds so straightforward.  In the 300 yard walk to school the chances are that one of us will trip, stumble or drop something.  Add something ‘cool’ like taking the scooter to school (thinking as a parent, ooh, a bit of extra physio = win) can make the journey so protracted you may have well left the day before.  Our record is 30 minutes to do 300 yards.  Others won’t be able to do that walk because they are in too much pain.  Being able to drive assumes that your joints are in a fit state to do so and medication doesn’t impair your judgement.

I wrote last week about children with EDS in the primary school setting and how important it is to understand what they may need or be going through.  You can read that post here.  At work there is a job to be done and in order to keep that employment, the job gets done.  For those with EDS, a job that another, non EDS employee finds routine may be utterly exhausting, painful or time consuming.  For a parent of an EDS child, the working day is punctuated with a generally long ‘to do’ list that somehow has to be completed in the same working day as which you are employed.    Finding an employer who understands the constant round of appointments, surgery, assessments, school meetings and such like is a truly wondrous thing.

NHS appointments lack flexibility – there are an awful lot of people that need to be seen and those much valued health professionals have their own lives and families.  There generally isn’t the option of saying “oh, could I come next Thursday afternoon instead of on Monday morning”, Monday morning it will be if you want to see that professional.  For a service we are so fortunate to have, Monday morning is generally just fine but you have to juggle working hours, education, transport and all that goes with getting there.

Today I’ve been following up a call from our physio team and block booking a number of sessions for a combination of physiotherapy and occupational therapy.  To be done after a certain amount of schooling and on the day when both our therapists can work together.  It’s a 1 hour window.  Then a quick meeting at school to make the plans to make this work – coming out of school for that window without interrupting too much learning or assessment time.   The maintenance of the lines of communication between everyone involved is an enormous task as is keeping track of all the paperwork involved.

Children with EDS fatigue so much faster than their peers.   Their peers are tired after school so the natural pattern would be to come home, chill out on the sofa and enjoy some downtime before dealing with the challenges of homework, spellings, more physiotherapy, occupational therapy exercises and such like.  However rest isn’t always good so extra activities, especially physical ones are seen as great in terms of building up muscle strength and therefore reducing the fatigue.  I may have uttered the words “vicious circle” before now.  There can also be extra tutoring and educational support to help the children keep up with their learning because they are unable to in the normal classroom environment.

Then after all this you’ve got to try and get food in your mouth again.  Get undressed, washed, into pyjamas and into bed.   Except you’re so tired that keeping your balance to get legs into the right holes is really hard.  Administer or take the correct drugs, make sure whatever ‘kit’ you may need during the night is in the right place.  Then lying down hurts because you’re body is so tired that the joints won’t hold in place.  So you won’t necessarily sleep well, and then you’ll wake up, yes, you’ve guessed it, tired again.

Having EDS doesn’t mean that life stops.  It doesn’t mean that it’s all doom and gloom and that what you can do is overwhelmingly limited.  It’s just our day is a bit more challenging and perhaps a bit more painful than what someone else might call normal.  Going to the park, going to the pub, socialising, holidaying, pretty much whatever you like is, with a bit of planning and perhaps a few adjustments quite possible – just like other people do in their ‘normal’ day.

This adventure playground was a test of stamina and gross motor skills. He was utterly exhausted when he’d done it, his hips were hyper-extending so much his feet turned out and he was so tired he could barely speak. But he did it, and loved it and it did wonders for his confidence. Just a ‘normal’ day really,

The post A Day in the Life of an Ehlers Danlos Syndrome Family appeared first on Cheetahs In My Shoes.

It must be really hard being a SENCo (Special Educational Needs Coordinator) at a Primary School.  On top of your normal teaching and management responsibilities you have the responsibility of overseeing the care of a collection of children who specialise in being as un-straightforward as they possibly can.  Some may come with a condition with a name that you know and/or recognise.  Perhaps you’ve ‘come across one’ in your career or have knowledge from a training course, a friend, an article…something.  And then you get my children with Ehlers Danlos Syndrome – and atypical EDS at that and a blood disorder that doesn’t have a name.  It can’t be easy and I can’t imagine you get up in the morning thinking “wooohooo, I’ll be dealing with x today” (if you do, I salute you).

The thing with EDS is that essentially it doesn’t ‘show’.  If you haven’t got a limb strapped up, in a splint or obviously bending backwards, it’s often not an easy call to spot the child with it.  You wouldn’t notice that their skin is probably a bit (or indeed, very) doughy – like well kneaded bread before it rises.  You may not notice that they hold the pen in a different way, you may not notice their bruises don’t get better very quickly nor do their playground scrapes heal well.  You might just notice that they crash into things and fall over a bit more than the other children in their class, but the younger the child is, the less this will stand out.

You might notice that they can’t keep up as well in PE, that their gross motor skills aren’t quite the same as their peers and that their sense of balance is erring towards the decidedly unbalanced.  You might notice that their fine motors skills aren’t quite there but you couldn’t put your finger on what was wrong.  Their parent might tell you about some odd tummy symptoms or that their child reports pain in joints, despite you not seeing any injuries or excessive use.

But on the other hand you might not.  The thing with EDS is that it pretty much presents differently in every person who has it.  Some people can do amazing ‘double jointed’ partial disclocation of joints tricks; “put their shoulder ‘out’”, “put their ankles behind their necks” – often with absolutely not pain or discomfort at all.  Other things like yawning may partially dislocate their jaw and be excruciatingly painful or just carrying a bag or walking upstairs may be stomach churning.  It doesn’t show though – unless you see an hand hanging off a wrist at an interesting angle and the owner of said wrist either looking very pale or saying “hang on a moment, I’ll just put my wrist back”.

A primary school child may be too young to have a formal EDS diagnosis but if it’s mentioned, there is probably a strong chance that either the parents or medical professionals are just biding their time.  It’s not a condition that, at an early age, can warrant an instant diagnosis.  All children are hypermobile to some extent and as is well documented, all children develop at different times.  The difference between a diagnosis of ‘hypermobility’ and ‘Ehlers Danlos Syndrome Type III’ is a tricky one as EDS is sometimes known as Benign Joint Hypermobility Syndrome.  Benign in that it is not cancerous – not that it doesn’t really do anything.  It can be completely and utterly debilitating both for body and mind.

EDS is a hereditary condition but doesn’t present consistently through generations.  For example my main problems are joint instability, pain management and mental health issues.  My children present with immense fatigue, some joint pain, severe hypermobility and joint instability but only in some joints and gastro oesophageal reflux.  How this in time will change I don’t know.  I am aware that there is research going on into the significantly increased chances of children with EDS having mental health issues due to the way that some hormones travel through connective tissue in the body.  Therefore, in the primary school setting, keeping a careful eye over the way that the child is integrated into the school setting, included in activities and how friendship issues are managed could be key to helping that child avoid some of issues that may arise as they move towards puberty and continue into later life.

What you might not see is the file of letters at home that the parents have from numerous hospital appointments and assessments.  You may not see the diary packed with before and after school appointments.  You may not realise that the child is doing extra physiotherapy and occupational therapy and has been doing so for months or years to get them to the place where they are when you first meet them.  You probably won’t see the specialist cutlery at home, the weights tucked away under the bed for exercises or the little adaptations that the child has to make when going up or down the stairs that you don’t have at school.  You won’t see the kitchen cupboards that look more like a pharmacy and you won’t see the parents up at night comforting a child in pain.

EDS patients are well known for their coping strategies.  We find ways to do things.  Some of those things will see us through life with no problems, others need to be corrected – but with gentleness and compassion.  Trying to make your body do something it isn’t used to is not easy.  When the message leaves your brain correctly but gets confused on route to where it’s going that’s frustrating and, if not well managed, demoralising.

The thing is, the chances are that the child that you see won’t be failing.  They won’t necessarily fall into the bottom slot of your statistics, the demographic that causes most concern to you in terms of welfare.  That child may be taking part in a ‘normal’ school routine.  They probably won’t admit they’re in pain or struggling and their concerns will quite often be completely ‘normal’ for their age.

That’s not to say they don’t need support.  No child should have to fail before they get support (go and read this article by Renata from Just Bring the Chocolate on that very subject) and the question that should be asked is not ‘is this child failing?’ but ‘is this child reaching their full potential?’.  Is there something you as the SENCO could do to make life better, easier, less painful, more inclusive?  They might be able to take part in sports day, unaided but how much pain will they be in afterwards, how will they feel about coming last?  More practically, they may be able to sit their assessments in a ‘normal’ time frame but is pain, fatigue or their coordination difficulties going to mean that they don’t achieve their best?

Resources available for EDS patients and their parents aren’t great.  It’s really hard to write manuals and guidance on a condition that varies so dramatically between patients.  If you have a look on my Links page there are various organisations who can help.  Having a child diagnosed with a rare condition is horrible – having a child without a diagnosis is even harder.  It’s not ‘just’ the child in your care that lives with the condition – it’s their entire family.  Other siblings may also suffer, as may the parents.   Leaving your child in the care of someone else is a daunting prospect, let alone when medical conditions are involved.  Add in the pressures of academic achievement and your role of SENCO becomes even greater.   Even though the condition may not be visible on a daily basis.

I’ve written this because May is Ehlers Danlos Syndrome Awareness Month.   It’s a condition that isn’t well understood so ask questions, ask the parents, ask other professionals, ask the child, encourage honesty, be transparent in what you do and admit that you don’t know…  I can’t give the answers, every child is different but more importantly, every child matters.

Doughy skin, poor muscle tone, hypermobile, poor fine motor skills, poor sequencing, physiotherapy requiring for strength and gross motor skills, occupational therapy requiring, speech therapy requiring, podiatrist requiring Ehlers Danlos Syndrome Type III patient. Can you tell?  Thought not.

The post Ehlers Danlos Syndrome at Primary School appeared first on Cheetahs In My Shoes.

It’s been a while (like, well, the last 6 months or so) since I looked out the window and saw the most beautiful of sunsets.  Although we’ve had some lovely winter sun, the sunset tonight seemed to herald the beginning of summer (sorry for whatever curses I’ve now brought on us all, if it rains, it’s not my fault).

My Facebook feed has been full of pictures from fellow bloggers and friends who’ve been out instagramming, with their camera phones and with their whizzy cameras capturing the beauty of it.  Wispy cloud, pink skies – here’s to some more beautiful evenings in 2013.

The post St Albans Sunset appeared first on Cheetahs In My Shoes.