Tag Archives: health

It’s Been Non-Stop (As Always)

1 May

No, I’ve not fallen off the edge of the planet; it just seems that way.

It’s been absolutely non stop since last summer, when the children went back to school and Teen Boy went off to college.

Small Girl’s return to school went badly, to say the least. I could not understand what had upset her so badly, but every afternoon and evening, and then the mornings, started to go back to what I thought of as the Bad Old Days, before she had full time support.

She was unable to verbalise anything specific, and I decided it must be “just” a bad transition after the good summer we’d had.

Oh no it wasn’t! I found out after almost three weeks – when we weren’t talking specifically about school – that her PSA (Pupil Support Asst) had been taken away from her! With no notice, and nothing home, not even an email to inform me of this massive change.

The effect on Small Girl was nothing short of catastrophic. Her ability to function in the mainstream environment depended entirely on having her own adapted curriculum and dedicated support from this lovely woman who could read her moods better than anyone outside of the family.

Obviously, I raised merry hell at the school. The poor head apologised that we hadn’t been told (What? You honestly expected a child who you know becomes non verbal under stress to pop out this wee gem at home time?) and then we got the bad news that the LEA had done this across the entire Highland Region. It wasn’t the decision of the school, and in fact they couldn’t cope, i.e. expect to fulfill basic requirements with the additional support they currently had. I said, well no, of course you can’t because my daughter’s full time support has suddenly been axed. Not allowing for anyone else, this was a serious issue.

The biggest problem we had with this withdrawal of support was the very real risk to SG’s physical safety; put simply, if she’s very upset she’ll do a runner. Highland schools are not on lock-down like a lot of English ones seem to be, so it’s the work of seconds to be out the doors and over the fence, straight onto the main road, down the hill, and – God forbid – into the sea (which is a huge draw for a lot of autistic children , SG being no exception.

So, we did the only sensible thing; we kept her at home. I could have decided to take the education department to a tribunal for endangering the life of an autistic child (among other failures) but in the end I thought it simply wasn’t worth the energy it would cost me, and the detrimental effect it would have on her, being effectively in limbo while we fought on. I wrote a letter requesting permission to de-register her from school instead.

There was a nasty moment when we got threatened by some suit at the council, so I promptly sent him a sharply worded email setting out in detail exactly how they were breaking any number of laws by their persistent failure to provide a safe and nurturing environment for my disabled child, and that if they wanted to argue, they could bring it on. I said she was being kept at home as being in school was detrimental to her mental and physical well-being.

I got the permission to de-register a lot faster than the maximum six weeks – what a surprise!

Anyway, since then we’ve been de-schooling, which mostly consists of a lot of cuddles, stories and play doh, with visits to the library and the parks. Small Girl has also done a fair bit of what I’d term “school work” in various work books, and on line, but she’s still scarred from the build up of years of sensory overload, so we’re taking it slowly.

And what of Small Boy? Well, he’s had a tempestuous year so far, I think it’s fair to say. His anxiety is still off-the-charts bad, and my state of alertness to the possibility of a meltdown (and omg they are spectacular in their violence and length) puts me on a level (or so it feels) of a bomb disposal cat who’s used up eight lives. My sleep is fractured as I never seem to be able to switch off, I get a ton of headaches, and I am often grumpy AF, but as we head towards the last ten weeks of his school life, ricocheting from day to day, and his insistence that he can manage the four hours a week he is timetabled for, I am excited to know that from the end of June he will be finished with primary school, and from then on, the education of both my youngest will no longer be anything to do with the education authority. And I’m looking forward to learning all manner of new and interesting things alongside these two amazing kids that we won’t allow the school system to break.

Mental health is often precarious in autistic people, whatever their age, and frankly no wonder. The pressure to conform to neurotypical standards is high, and even some of the special schools just don’t “get” it. They might be able to mask, but eventually the mask will slip, and the fallout is bad, often resulting in self harm, low self esteem and more. If Scotland refuses to accept that the ethos of mainstream for all is damaging, then I can’t use my children as a weapon to prove how badly wrong the system is, not if I want them to stand a chance of being mentally sound and proud to be autistically authentic.

I’m no saint, and I often get it wrong BUT unlike teachers who spend so much of their time keeping control rather than imparting knowledge, and then, in Small Girl’s words “making us sit down and do maths” I can hopefully make them comfortable in their own skins as they branch out into learning what enthuses them. Am I scared? Yup, you betcha. Do I think I can do this? Yes I do. Because what I want for them is not a string of letters after their names (I mean, that would be cool) but rather for them to have enough confidence to face the future being proud of what they’ve achieved. If they are polite, and kind, and know how to cook meals and load the washing machine, and sing along to Korean pop music, as well as add up and read, then I’ll consider they’re doing all right.

So that’s us right now. In limbo with Small Boy and his final few weeks of school, and sort-of still de-schooling with madam. But we’re all still here, and the good days outnumber the bad.

bikes

Here they are last weekend, enjoying being outside for once. At the risk of jinxing it, we finally have some half-decent weather.

 

Do Something Good Today – Morquio Syndrome

29 Jan

Tia2

This little beauty is Tia (no, not the pony!)

Kamal.1

This is Kamal – how could anyone resist that grin?

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And here is Sam, what a cutie.

They all have something in common, they have Morquio Syndrome.

They have what? I hear you say. Well, that’s what I said too, but then I got to know the mum of one of these gorgeous children and the story behind these smiles is a frightening one.

Basically, Morquio is what is termed an Ultra Rare Condition (also known as an Ultra Orphan Disease) and there are fewer than 120 sufferers in the whole of the UK. A person with Morquio starts to show symptoms usually around age 2-3 when their skeleton doesn’t grow at the same rate as their internal organs and problems start. I’m no medical expert so please excuse me for copying some relevant facts about the sort of things people with this condition have to deal with:-

Skeletal deformities
Breathing problems
Short trunk
Heart valve problems
Weakness in the neck
Muscle weakness
Spinal cord compression
Eye problems
Knock knees
Hearing loss
Overly flexible joints
Dental problems
Abnormal walk
Enlarged liver
Spinal problems
Enlarged spleen
Chest deformities
Limited energy
Or, as this paragraph says it:-
Morquio A (also called MPS IVA) is an inherited condition that affects major organ systems in the body. People born with Morquio A are missing or don’t make enough of an important enzyme and, as a result, they can’t break down certain materials in the body. These materials eventually build up in tissues, bones, and major organ systems. Morquio A can cause potentially serious problems, including heart disease, skeletal abnormalities, vision and hearing loss, difficulty breathing, and early death.
Not much to smile about eh? Well, you can see by the photos above that having Morquio does not stop these young people from enjoying themselves. They are just like any other children, they have school, friends, homework, and out of school activities like swimming, drama and football. What they also have is exhaustion, pain, and frustration, and that’s just the tip of the iceberg.
Well, into the mix comes a wonder drug called Vimizim. A weekly infusion of this can – and does – seriously improve their quality of life. Using Vimizim means that they are less tired, less dependent on their wheelchairs, and overall in better shape. It helps them to breathe more easily, and there is a very real possibility that it will prolong life. It’s not some placebo that has been shown not to work, it makes a measurable and encouraging difference to life.
Now, if these children had, say, cystic fibrosis, which unfortunately is quite common, their treatment would be funded. I know with CF that a lot of the physiotherapy can and is done at home, but I also know there are way too many hospital and clinic appointments involved in ensuring that a person with CF gets the best possible chance at a good life, and the treatments have been shown to work, with the life span of CF sufferers rising all the time.
So if I told you that people with Morquio are being told that a life-enhancing and in all likelihood life-lengthening drug is seriously under threat of being withdrawn, what message would that send? Personally I feel that it’s telling people with Morquio (and bear in mind some of these are adults who have independent lives and contribute to our economy by holding down good jobs) that their lives are somehow worth less than the lives of others. How can that possibly be right? Or morally acceptable? These people aren’t asking for fancier wheels on their wheelchairs or anything that could possibly be seen as an “extra”, they just want the chance to live the best and fullest lives they can, in as little pain as possible, and, in the case of the children pictured above and others like them, to have the chance to grow up into the adults they deserve to be.
The NHS has not yet even bothered responding to the drug company, and obviously it is vital that they do so in order to ensure the continued supply of this essential medication.
So I’m asking you to help. To help Tia, and Kamal, and Sam, and all the other 120 people in the UK that live with this condition, and for the time it takes for your kettle to boil, or probably even less, please read and sign this petition.
The more people that have signed, the greater the weight this petition will have, it’s that simple.
If you have Facebook then please use the link on the petition to share it and ask your friends to sign. Please share it on Twitter as well, we need the numbers to make a difference. I’ve heard it said that the way to judge a nation is by how it treats the most vulnerable in its society. Let us show the powers that be that we judge all humans to be born equal and to have the right to what their country’s health care can provide, without prejudice.
Thanks for reading.
Information about Morquio taken from http://www.vimizim.com

Gratitude

23 Dec

We have so much to be grateful for. It struck me tonight as we were all sitting down to a takeaway meal of our choice that for many people, even those with so-called decent jobs, takeaways really aren’t an option. Then it started me thinking about all the other things I take for granted and just how lucky I am.

Food – by most peoples standards I guess our family has unlimited food. As dd1 has noted since she’s gone to university, “I won’t ever say there’s nothing to eat again. Just because I might not fancy what’s in the cupboards doesn’t mean I should moan about being hungry when there are so many options.” And she’s right. Since following the frankly rather wonderful Jack Monroe, both on Twitter and her blog (A Girl Called Jack) I have forced myself to think more creatively about ingredients and not to waste anything. I can’t slash our budget as much as I’d like due to small boy’s serious food intolerances, but that just leads me onto another point:

Health. Or more specifically the health services we enjoy. There’s always a story of a disaster and a hospital making a mistake, but then again news is push-button instant these days. I’m sure there were just as many errors fifty years ago but we never got to hear of them. Two of my children have been diagnosed with autism, and although there have been some serious hiccups in the process at times, my family do have that assurance of some support with the challenges my kids face. And let’s not forget the routine GP appointments for the everyday ailments like migraines, tonsillitis, excema etc; a few minutes waiting in a heated room to see a professional who then gives you a piece of paper that entitles you to the correct medication to make you well again. That is pretty amazing when you look at it like that. And being a mother of five children there have been weeks when I’ve seen more of our local GP than I have of my husband!

Family – there’s another one. I might moan about them, in fact I’m sure I do, but I treasure my family, they’re what makes me “me”. Being a mum was always the one thing I wanted above all else when I hit my teens so finding the Right Man (and keeping him -so far!) and having his children has been what I felt I was made for. We don’t have a very close extended family outside of grandparents and siblings but you know something? That’s OK. Other people who aren’t related have come into our family and they mean so much to us that I struggle to think of them as “just” friends. Maybe the saying that Friends are the family you would chose for yourself is never truer with us.

Where I live. I reside in what I generally consider to be the most beautiful part of the universe – the Highlands of Scotland. Nuff said!

Twitter. Not exclusively twitter as I have met some lovely people on-line through other sites, but on Twitter I have found so many parents like myself, just getting from A to B on a daily basis and trying not to lose the plot on the way. I’m not going to start naming names as it would take me far too long for one post, but I think you probably know who you are as you’ll either be reading this, or commenting, or maybe even RT’ing it. I can share their joys, and also their sorrows, and they share mine, and each time we connect I feel a wee bit closer to them and a lot less on my own, as sometimes I can be. I can truthfully say I love my tweeps! 

Anyway, I could go on all night, I’ve barely started. So I’ll just say I am personally very grateful for Christmas, this year especially, as with one child at boarding school and another now at university, this is a precious family time.

I hope you can all find something to be grateful for too. 

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