Confessions of a home educator

Like most home edders I get the usual reactions from strangers who ask why the children aren’t in school. “We home educate,” I say and one of the set questions that comes back is ,”Are you a teacher?” And I always answer “No,” because strictly speaking I am not a teacher. I never did a PGCE or achieved QTS, so I’m not a teacher. However, just between you and me, I must confess I did teach.

I worked in a primary school Reception to year 1 (that’s pre-k to K for American equivalency). I was taken on to support one child for five mornings a week, but in fact had 8 children with quite significant “special needs” each morning, leaving them with no extra support in the afternoons.

I taught teens who had been expelled from school, or had been in YOIs or prison; many of whom had genuinely been missing education, some since primary school. At the same college I taught adults and supported adults who were deaf, blind, lacking limbs etc.

I also taught at the University.

So, yes, I’ve done a bit of teaching and so I am sure some people will believe that’s the experience I rely on when home educating the children. Well, it isn’t. In fact it has been more of a hindrance than a help as we set out to home ed. I had to unlearn quite a bit.

The first lesson I had to learn was school standards are meaningless.  The huge temptation to wonder if my children were at the “standard” or “level” of other children their age became rather silly when I realised that each child was a mix of “average” and advanced or behind, depending on the subject and that they studied so much stuff that wasn’t part of school life that they couldn’t be measured against the school standard. It’s not easy to let go of these deeply rooted ideas about what constitutes a standard of education, but honestly, it needs to be done.

You may object. “Surely,” you might say,  ”Refusing to bear in mine standards and targets, can lead to allowing the children to slide into ignorance and never learn anything.”

I suppose it’s possible that someone would decide to home educate and then simply not bother to do so. But that’s not me. There may be occasions where home ed families are keeping up with the Joneses on grade books and whatever, but most of us are using so many different  curricula, methods and resources that it isn’t possible, and that’s before you add in the gifted and SEN kids that are part of the groups.

I have had to learn that it’s no good trying to make a child fit a method, I need to make the method fit the child. This is how I’ve ended up with such an eclectic approach to educating the children. Each child is different and each child is, as Charlotte Mason reminds us, born a person. As soon as you respect the personhood of your child, you ditch all the extraneous things that treat your child as a cog. It’s not as easy as you might think. I’d spent a long time learning to teach to the crowd and stick to the formula. Now I had to work alongside, rather than teach at a person and quite often learn from them.

I love the way the children will go off and learn something completely independently and then come and tell me about it later. I love that their learning is so mixed, and I especially love that they are not embarrassed to be enthusiastic about what they learn.

There are times when I think we aren’t getting very far and they give the impression they aren’t learning anything. But just as I am thinking, “It’s all a waste of time, they aren’t learning anything!” one of them will come out with something I was sure s/he hadn’t remembered or understood.

Of course that’s the other confession; I so still sometimes think home education is about filling my children with knowledge about stuff, when in fact, home education is about teaching my children how to learn, so they can learn for the rest of their lives.

So many ways to learn, like this very funny Three Little Pigs with some Classical pronunciation Latin words…enjoy.

Ivabradine for Inappropriate Sinus Tachycardia 7.5mg BD: 1 month on.

I’ve been on Ivabradine (aka Porcolaran) for three months now, but only on the full dose of 7.5mg twice a day for a month. So, what’s happening?

Most of the time my standing heart rate is below 115. Sometimes I get spiky days when it’s up to 120 but I haven’t seen anything more than about 120/122 even on bad days.

Resting HR hasn’t been as good. It’s still often around 95-100 but I have had some lovely 75-80 days.

Unfotunately, for some reason, my OI symptoms are worse. I am blacking out more often and simply can’t stay upright for much more than ten minutes at a time without presyncope, severe breathlessness, blood pooling and other nasties. I have no idea why this is so when my HR is coming down to more sensible levels.

My tremor is much worse when I’m upright too making me wonder about those standing dopamine levels I wish they’d check on. Gravity and I don’t get on very well.

My mid-afternoon crash is getting worse too, where I have to half lie down on the sofa because it’s hard to keep my head up. Not every afternoon, but more often than I used to.

I don’t know whether this is the Dysautonomia side of things or the ME side. My BP is still generally high. It’s a bit annoying that the one side effect of Ivabradine  I could do with -lowers BP – I am not getting!

It’s still early days and there’s more the Prof is going to do with me. Although the OI is worse I still think that as my HR is lower this is a good thing. Perhaps if I get the BP sorted out some of the OI will be sorted too.

If getting the drug cocktail right can at least halt the downward slide, I’ll be happy. I can’t take beta blockers so Ivabradine is it for the IST. The only other thing I can think of for OI might be L-dopa, but we’ll see.

Overall I think, so far so goodish.

READING: NB although many people with POTS or IST can take Ivabradine, it is not safe for patients who also have NMH (Neurally mediated hypotension)

Ivabradine; A Ray of Hope for IST

Ivabradine; Clinical Efficacy in IST

Ivabrdine in the treatment of OI - oh the irony when my OI is worse!

Radiofrequency Cath. Mod Ablation for IST. So far the studies I’ve read on ablation or IST show mixed results with more not working or making things worse than working. In my case I don’t expect to be offered ablation as my lungs are shot. anaesthetics don’t suit me. If your doc offers ablation think and read long and hard before accepting or refusing.

(some) Reasons to Home Educate.

There are so many reasons I am home educating that I could probably write a book on it. Not a particularly coherent book, probably, but certainly a very big one.

There are certain parts of my children’s academic education that I think are very important and are simply not properly covered by the National curriculum if they are covered at all. I want them to learn critical thinking. We have approached this with visual perceptual skills to start with and then thinking skills and analogies. From there we will look at Logic, fallacies and ordered thought processing.

In Maths, as much as I grouch about the shocking cost of Math U See, it is very ordered and sensible in it’s approach so the children grasp concepts well before building on them with the next ones. It’s a different and more logical approach than what the NC offers.

In science they don’t get as much hands on work as I would like (and they used to get) but from what I gather, they still get to do more genuine finding out type work than is available in schools.

But there’s more than just the academic side:

Socialisation: Yes, the S word. Like most home educators who have been doing this for more than a week I have noticed my children have good social skills; better than I would have expected. Sibling relationships are so much better than I could have hoped for and the children have learned to have patience for youngsters, gentleness with babies and respect for children and adults who are “different”. That’s if they even notice. In our home ed group we have children who look different because of a rare genetic disorder (It is Ectodermal Dysplasias Awareness Month) and a mother (me) who uses a wheelchair and sometimes twitches and jerks about a bit, or gets breathless and can’t speak. The kids don’t care. They all take it as part of life.

It makes me laugh when I hear people say that home educators are shielding our children from “real life”. We are giving them way more real life than they would ever get in school. They see mums pregnant and see the baby soon after birth, they see disability, different ages and all kinds of life in the community.

Quiet time: We live in a busy, loud and rushy-abouty culture. Children need quiet times. They need time to simply be, to read or sit and think. Adults need this too of course, but children especially. The constant full-on activity and noise levels at school are horrible, even for kids who aren’t sound sensitive.  (The number of stories I’ve read and seen and even know personally or children on drugs – usually Ritalin – just in term time should raise a whole bagload of concerns)

When Avila was still very sick, she used to need to go and lie down quietly. Sometimes I’d continue a lesson while one of the other mums would take her off somewhere quiet and read her a story.

Child centred learning; Instead of imposing a pre-packaged system on my children, I am able to tailor their learning to their needs. Ronan gets a more Classical approach and Avila a kind of Charlotte Mason cum Montessori approach while Heleyna gets Montessori with the slow and repetitious approach that she needs while she battles her dyslexia.

I know, from experience, that if Heleyna was in school now, she would be failing.  Her short term memory is very bad (a common thing in dyslexia) and so we need to repeat and work slowly through things quite a bit. She needs plenty of hands on work and plenty of break times to get through. Even a good SENCO would struggle with that when s/he had so many children with SEN to deal with. I had 8 SEN children in one class when I was working and their needs were so different it was impossible to offer them what they needed. One of those children really needed one to one all day every day and he was lucky to get 10 minutes a week with me alone.

Reading books: Perhaps because four of my children have some level of dyslexia, but also because I think good literature is good for the soul, the mind and life in general, I want my children to read. I want them to read whole books from beginning to end and I want them to enjoy reading. Charlotte Mason put forward the method of narration where the child would discuss what s/he had read. This can be made formal or better yet, an informal chat where the children, having loved what they have read will automatically want to tell you all about it.

The other side of this coin is I get to help them choose the books they will read. This means I can get them to stretch themselves with a book or two which isn’t as easy as they might otherwise choose to read. It also means I can avoid letting them poison themselves with nasties. As it happens bad books haven’t been an issue with us so far. There’s a lot of good stuff out there, some of it old and some of it new, and more of it coming onto the market; so there’s no time for rubbish books thankfully.

Home Ed meet ups: As is the nature of things, home ed groups vary. But the one we attend these days is just a lovely group.

There’s a whole LOAD of reasons I don’t want my children to go to school. I try not to be too anti-school, but so many parents tell me so many things and I remember well the ridiculous targets and boxes to tick even in Reception classes.

One other thing that has been bugging me is the medical papers I’ve been reading recently. I am astonished by the appallingly bad standard of much that gets published. I can’t help wondering if this is the standard Journals think is acceptable, what kind of education have these people had? I went to a working class comp and frankly, I could write better articles than some of the ones I’ve seen. I certainly want my children to have a better education than that.

I love the flexibility of home education. I love that the children are not interrupted by bells and moving to new classrooms when they are settled and interested in their work. I love that they have friends of different ages.

The other thing I’ve noticed and love is that the home ed children play together and there is no gender separation. Boys and girls are happy together and respectful of one another. On a side note, but one that I think pertains to Home Ed, I’ve seen and heard the argument against girls as altar servers, saying it puts boys off serving. At our church boys and girls, men and women, serve together without a problem, and my boys have never said they don’t want to serve with the girls. If any son of mine did say that I would have to have a little chat about respect. But I don’t think (I certainly hope) that this won’t be an issue as it’s simply not an issue with the home ed children we know.

My time with them: I hadn’t appreciated this until quite recently. But the fact that I am around them all the time means they can tell me stuff, ask me stuff and we can just cuddle up and talk together.  The importance of this becomes more evident as they get older.

These are just some of the reasons to home ed. There are so many more.

Drug Juggler (pt II) and CfSAC testimonies for May 2013.

A lot of people get to the point when they just wish they could ditch all the meds. I’ve seen people insist that their body will be able to deal with whatever is happening and self-fix. I wish that was true!

Too many people have bought into the superstition that “science knows all,” and “science will solve all.” This, much like the Cottingley Fairies doesn’t bare too close scrutiny. There are few doctors (my GP is a golden exception) who like patients reading the research. Many people think it’s because doctors like the mystique of looking like they know something we don’t. This may be so, but the more research and peer reviewed published papers I read, the more I think doctors don’t want us to read the stuff because so much of it is shockingly badly done! The standards for publication are so bad it makes me wonder if these papers are actually read by the “peers” who reveiw.

On top of that, diseases like ME and FMS are sucked into shoddy political situations meaning there is little to no research funding and then what is done is deliberately skewed to suit political ends. Science done honestly might have some answers, but vested interests, power grabs and pure corruption mitigate against this.

I do think you should read the research on the drugs the docs are telling you to take even if the research on your disease is difficult to wade through or judge.

inhalers; things you should think about. Even adults do better with a spacer or volumatic. If your doc hasn’t given you one, ask. I have a small one that fits in the bottom of my drug box. You sh

ould also have a peak flow metre and I recommend a pulse ox meter. I’ve had O2 Sats at 73 without really noticing the drop. I’ve mentioned before that steroid inhalers can have side effects, such as voice loss so drink water and gargle after use. If you are treatment resistant like me, most docs advise using Salbutamol inhaler regularly before the steroid. This is because it is supposed to relax the airways so that the next inhaler is better absorbed. (Montelukast can cause voice loss too apparently.)

Amitriptyline: Low doses of drugs like Amitrip or Nortrip have pr

oved very useful for the management of neuropathic pain. The side effects can be pretty yuk even at low doses. I’m on 50mg which is on the high side of low. To quote Dr, Patrick Woods whose research into FMS has shown the dysautonomic and hyperadrenal side of it (he sees FMS as a form of hyperadrenergic POTS) “wake up a fat zombie.” Yup, that’s about right I’m afraid. Add in steroids and you wake up a very fat zombie.  I have been fortunate in the zombie side hasn’t been too bad once I got used to the drug. Opiates on the other hand were horrible

and didn’t really help the pain that much either.

One of the other side effects of Amitrip is hypertension. At antidepressant doses (over 75mg) hypotension is more common, (at least it was among the depressed patients I nursed who were on antidepressant doses back then. Now Amtrip is rarely used for depression). It is likely that part of my hypert is drug induced because of Ami and the steroids.

One of the noted side effects of Ivabradine is hypotension which is why it isn’t prescribed for people with POTS and NMH (neurally mediated hypotension). Unfortunately for me the Ivabradine hasn’t produced this side effect. Typical!

The other commonly used drug is Gabapentin which, as the name implies, regulates gaba in the system. The drug has the added advantage of being an anticonvulsant. I haven’t changed to it as yet because so much else is going on and I haven’t had a seizure since last summer.

The other reason I haven’t changed is the Amitrip is working for me and it took a very long time for me to get pain levels to manageable.

Over the Counter stuff: I take CoQ10 and Magnesium.  A lot of studies have shown ME patients have low levels of both, hence the high number of heart failure deaths and poor immunity. It’s even hit the MSM

Maybe one day we will have access to drugs like Ampligen and Rituxin and actually get our lives back. Until then, we must mix our cocktails and get by.

Some reading: This excellent article Some Inconvenient Truths that shines and uncomfortable spotlight on the “Wessley School”.

THIS is a great overview of the Spring 2013 CFSAC meeting You can read Jenny Spotilla’s excellent and rather heart breaking testimony HERE as she shows a severe drop in funding for ME/cfs which is beyond shameful as more info is coming through showing how sick many people are, and how many are dying of this horrible disease.

Amy Squires Testimony

Jeanette Bermeister’s Testimony where she refused to use the term CFS (good for her) and speaks of how well she got thanks to Ampligen which the FDA have refused to licence for ME even in the light of recoveries (Bob Miller springs to mind)

Mary Dimmock’s testimony

Also READ THIS especially the quite frankly weird remarks by Dr Unger who thinks doctors are too dim to understand the CCC. WHAT? Even I understand it!

While a lot of what happens at CFSAC meetings are obviously American centric, it would be a mistake to think that those of us in other countries are not effected by what happens, and doesn’t happen, as a result of these meetings. Interestingly it was raised at the 2011 Nov meeting that Wessley, White et al were working for the Medical Insurance companies when they began their harmful campaign to label ME as some kind of somatosatation disorder, thus reanimating the corpse of Freud with all the nasties involved.

ME/cfs awareness month ends tomorrow. But the disease goes on.

Finally here is an amazingly good and easy to understand lecture on dysautonomia POTS, NMH etc from a biochemist who has hyperPOTS and NMS It’s nearly 2hrs long so I recommend watching it in bits. But you will learn a lot!

The vid maker and a discussion of the vid is found HERE at DINET

I am still awaiting tests for hyperPOTS to go with the IST.  As I’m already on Ivabradine I guess there’s no rush.

ME/cfs, Voices from the Shadows.

Today is the last day of ME/cfs Awareness month. I’m posting the introduction video for the documentary “Voices from the Shadows” that tries to give a voice and raise awareness for those with Severe ME. Please pray for those at this end of the disease and for all of us who are heading that way with some serious trepidation.  The Intro is less than 5 minutes. Watch and pray.

If you know someone with ME please take the time to watch this. Don’t listen to the MSM. They have no idea.

Later I’ll post part two of drug juggler.

The hedgehog came in from the cold.

On Sunday Alex and Anna walked home from Mass and found a hedgehog lying in the driveway looking a little worse for wear. As they were off at an unearthly hour the following morning for their Honeymoon they couldn’t take care of him. The RSPCA were not available so they brought him to us.

To be honest, he seemed fine when he arrived. He mooched around the rabbit hutch happily and tucked into some cat food, licking his lips and polishing his nose enthusiastically. We gave him some tepid water as the Hedgehog Rescue info said not to give cold water. He enjoyed his drink and went to bed.

As the following day was a Bank Holiday we continued to care for him and although he occasionally closed one eye and dropped his head to one side, he didn’t seem that sick. He squeaked in his sleep, but we didn’t know if that was normal.

So on Tues we were to phone the Rescue Centre hoping they’d check him out and if all was well, we could release him back near where Alex and Anna live.

I’d lost my voice again and Iona was out so we waited for her to get back. Montague, as Anna had named him, had slept all day and not eaten the night before. He was restless, getting up and then falling asleep again, but hedgehogs are nocturnal so we weren’t too fussed. As it was raining and he had come out of his bedroom to sleep I kept going out to check him,

Iona came home and said she would take him to the vet up the road. But when we went to check him again, poor Monti had died.

It may have been a virus. It was sad and Avila cried a lot, poor kid, but we gave him a warm bed, good food and a safe place for his last couple of days, rather than him dying at the side of the road.

So Montague, R.I.P.

Autoimmune diseases on the rise rapidly. No one seems to know why and CFSAC meetings…

Reports have been bandied around for some time now showing that autoimmune diseases such as type 1 diabetes, Lupus,  and celiac are on the increase across the globe. Type 1 diabetes has increaed by 23% between 2001 and 2009.

Asthma is another disease that has not only increased rapidly over the last 30 years but according to Dr Gailen D. Marshall of CFSAC the complications of asthma are increasing. I am now one of those patients with steroid resistant asthma.  Those of us with this form of asthma are supposed to be rare, but “rare” is becoming common it seems. I have IST which is supposed to be “rare” but there’s a lot of us out there.

The usual “blame the patient” stuff is rolled out as “high salt diet” and “junk food” and “alcohol abuse” etc. gets bandied about, but this falls flat when you realise the increase is global and so that includes areas where such diets and lifestyles either aren’t there or aren’t even available. Not to mention the fact that most of us don’t tick those boxes anyway. It is a cause of irritation for me that when a history is taken and I don’t smoke, eat junk or abuse alcohol the view is that I can’t be ill then.

This goes along with the number of research outcomes that show an autoimmune aspect to ME. Whether ME is purely autoimmune or a nasty mix of stuff isn’t clear. It won’t be made clear in the foreseeable future thanks to the shameful lack of research funding but the clues are there.

I’ve been watching last years Youtube vids of the CFSAC meeting 2012 with a growing sense of despondency.  I am awaiting this years meeting vids to go up but going by some of the reports from those who attended, it may be better if I never watch them.

I am saddened by the same stories from patients told over and over which seem to be words aimed at walls not people. But the news that Dr Unger believes that the Canadian Definition of ME is too complicated for poor doctors who are “frightened by it’s complexity!” Seriously!!!

The call for the Canadian and International criteria to be made the criteria for the disease goes on.  It needs to happen. Thankfully the biomedical research is showing promise. It shows that excellent results can come even where there is so little funding.