I’m Sorry To Tell You…

…but this is not Michelle writing but her daughter Iona.

Unfortunately my mum passed away on Tuesday night. As most of you know, she had experienced a long eleven year struggle with a complex illness that even I could not start to explain, and I feel she was ready to go home. She never made it to the hospital, but died at home attended by paramedics who did a wonderful, sensitive job. The cause of death is known, but as yet has not been properly explained to us by her GP, so I cannot give you any real information on that.

The family has come together and the children are coping as  well as they can, we hope you will have us in your prayers for the coming days and months, and as mum once wrote ‘if you don’t have a God, borrow one’.

I know that she appreciated the love and support she found from her internet friends and so we all thank you for any advice, kind comments and the faithful readership you offered her in her life.

Love,

Iona

x

Home ed happens anyway.

It’s been rough recently. For dysautonomia awareness month my dysautonomia is making me very aware of it.

This week is a quiet week for home ed. I’ve set music, reading, finishing off work including the Archimedes pack and we’ve started an artists lapbook.

I had a doctors appt to get to today. I was gone a long time. When I got back the children were doing some cooking with Iona. They had finished off all their lessons and watched an episode of SALSA (which they love) before starting some cooking.

It’s really heartening to see how they just continue to do their learning no matter what’s going on around them. They were pretty proud of themselves too 🙂

The plan for me is that I am to go back to the doc on Thurs if I’ve managed to stay out of hospital until then. As it happens half term is coming up so hospital wouldn’t effect things so much anyway. We’ll see. Hospital is no place for sick people – but I am running out of excuses not to go in.

Montessori; body, mind and soul.

I sometimes think our culture hasn’t so much embraced dualism as a kind of tri-ism. While the dualists liked to separate out the things of the body from the things of the soul, leading to some heresies where a “Christian” was told he could either do as he liked with his body, or must ignore it to death. But now we have separated out body and mind and ditched the soul. Montessori is a breath of fresh air in that she sees persons as whole; body, mind and soul. One interacts with the other.

In her education the child is not reduced to some one sitting and learning aurally by hearing the teacher and visually by watching the teacher – all very passive, but participates in his own learning and discovery by doing things, touching, manipulating, tasting, smelling and trying things out. I wish I had read her books while I was still doing my MA. It would have helped me a great deal.

I did my MA dissertation on how to bring children with various severe learning difficulties (especially autism) to the Sacraments. Montessori’s philosophy was rooted in three things (as far as I can see), her work with children with learning and physical disabilities, her Catholicness and her degree in engineering. At first sight you may wonder how they connect. Well, as I see it, Montessori learned a lot from the children she worked with in the hospitals. In my experience such children have amazing compensatory coping skills so that they can get a great deal out of life.

When I worked in a children’s hospice we had, what was called a “multisensory room”. Through light, sound and texture we could arrange the room to suit the child. Sometimes it would be warm, darkish and low stimulation, and at other times the children liked the music, bubbles and coloured lights. The walls were white so that they could be anything from low to high stimulation. Many children with autism in particular need low stimulation. There’s some evidence that children with ADHD cope better with it too. Montessori didn’t have to deal with the fall out from the over bright, shouting, busy stimulation directly aimed at children that we have today, but she understood children needing to learn through the experience of their whole body.

Montessori’s degree in engineering definitely influenced her brilliant idea to introduce geometry as a sensorial activity with very young children. It was a particularly brilliant plan in light of the children who first attended the “Children’s Houses”. While Charlotte Mason had the children under her care learn about the world around them through sensorial experiences with nature, the children in Montessori’s schools were in the slums of Rome. There wasn’t a lot of nature to be had. Even so, Montessori records how they found a piece of dump-land near the flats that the children turned into a little garden. Children feel and run their fingers around the shapes and edges whether of the items in the geometric cabinet or leaves and sticks from outside. The lessons introduce the names of the shapes and the children draw them, touch them, make them fit into place and so their whole selves get to discover the shapes.

So, how does Montessori’s Catholicness fit this? In my dissertation I wrote about how a church can be a multisensory room. (Putting aside the stuff that happened in the ’70s where churches became boxes with benches in them). In a church there are stain glass windows, statues, candles, marble, stone and wood. There is the smell of old incense – and at Mass the smell and sight of new incense. All of the accoutrements of Mass or the church when empty, are one big multisensory experience that does not require the participant to grasp spoken language (although that helps) or to be able to see (that helps too) or even to truly “get it” on a theological level. While the Mass has it all there for the Phd Professor- so everything is there for the severely disabled person. The Church knows that we need to have a relationship with God that is whole. We pray with our bodies, minds and souls just as children need to learn and form their relationships body, mind and soul. Montessori got this. In a nutshell I would say that Montessori produced a method of education based on a philosophy that we all need to interact with beauty.

Being Catholic in a nutshell: Why go to Mass every Sunday? (or every day even!)

I’ve decided to write some short answers to the stuff even Catholics don’t seem to know the answers to. I hear these questions a lot. So here’s the first one:

Why do Catholics have to go to Mass every Sunday? What is the Sunday obligation all about?

It’s like this. On the night He was betrayed Jesus took bread and wine during a liturgical meal (a Passover) and said, “This is My Body” and “This is My Blood” and then “Do this in Remembrance of Me.”

He didn’t finish the meal but went out to the Garden of Olives where He was betrayed and arrested. He was put through trails and torture before taking His cross and completing His Passion – a word that means to pour out – on Calvary, where He was crucified and died.

On the Third Day He rose.

Every Mass is a re-presentation (meaning to make present again but not a re-sacrifice, as that’s not possible or warranted) of that once and for all Sacrifice made by Jesus for us and our Salvation. When we go to Mass we are in a way actually there with Him as He offers His Body and Blood and then we can go forward and eat His Body as He commanded in John 6 so we can have Life in us.

Knowing that at each Mass we are drawn into participation with the Passion and can receive Him in His risen self; Body, Blood, Soul and Divinity then we are automatically obliged to do so under the First Commandment. We must put God first.

So, those who think doing something else is more important than being with God in such a profound way are making something else more important than God.

That’s it in nutshell.

Hospital Appointment – larynx/throat speech specialist

I’m sorry to write two medical posts one after the other but I had my hospital appt yesterday and thought I’d tell y’all about it.

I saw a speech cum throat- especially larynx specialist. I had been referred to her by my Respiratory Consultant who suspected that some of the asthma and other breathing problems may be Vocal Cord Dysfunction.

She took a very thorough history – I was in there for an hour – on NHS time!  We went through the different breathing problems; some obviously asthma, some orthostatic, some being something else. She was interested in the problems I’m having with swallowing and eating – without immediately jumping to daft conclusions.

Then she stuck a camera up my nose and down my throat. This is just the sort of thing a good Catholic girlie can “offer up” 🙂

From this delightful experience she told me straight away that my throat was “cherry red” and otherwise a bit of a mess. So I now have a dx of Vocal Cord Dysfunction (VCD) and EERD (a form of reflux)

In her talk about how VCD works she spoke of it as a spectrum disorder. On the mild end are those who have what I suppose sounds like voice strain; teachers, soldiers and opera singers being the most common patients. (As my Resp Con is a Colonal in the army I wonder if that’s how he guessed so quickly what was happening to me).

On the rough end come those of us with severe asthma and autonomic nervous system problems. She hadn’t heard of dysautonomia as hyperadrenergic POTS or IST but she really quickly grasped the ANS dysfunction side of things for me and how that kicks in with VCD.

I’m to start therapy which will be around breathing exercises and voice control. There’s no cure as it’s obviously ANS related but it can be better managed – which I’m all for.

THIS PAPER IS A VERY GOOD OVERVIEW

Since the TIA last week I’ve had some problems with being upright and breathing. Needing to lie down more often and the bloomin’ stairs are a killer. I’ve set something off that I can’t get on top of right now. What a shambles.

Chronically ill mother’s homeschool approach.

I’ve noticed that sometimes the question of homeschooling while chronically ill is lumped in with pregnancy as if they are the same or very similar. They aren’t. Even if (like me) you have the joy of nine whole months of throwing up left right and centre with some “mummy brain” thrown in – pregnancy is different in one very vital way. No one is pregnant for years on end, and many of the more yukky sides of pregnancy are both treatable and manageable. It is also silly to try and lump pregnancy as an “illness”. It is’t, even if the culture of medical elitism tries to tell us it is.

Chronic illness can be neither treatable nor, at times, manageable – and is way more unpredictable. When you plan home ed through a pregnancy you know there’s a point in which you can pick up again. When you plan through chronic illness it’s a whole different set of challenges.

So, what are the things that you can do if the Boss has called you to homeschool and He’s called you to carry the chronic-cross too? You can tell Him what you think of His plan 🙂 – and then you have to get on with it.

First things first. You see that big pile of guilt you’ve got building up over there. Deal with it. Sort out the fake from the real. Bin the fake and get yourself to Confession for the real stuff. If you are too sick for Confession (and there’s nothing mortal lurking about) you can pray a lot. He’s merciful like that. (even when you’ve told Him how you really feel).

Once that’s done (and yes I know it keeps rebuilding, but keep kicking it down) then you can move on to priorities. Prayer first. You’ll get nothing done without help from Upstairs. He has a lot of friends and relations who can be relied on to keep praying for you too. (Where would I be without St. Bridget of Sweden?) One of the wonderful things about the saints in heaven is that they can still pray, even when you, in fog, confusion and befuddlement can’t. Also we are fortunate that God, who is all wise gets a prayer of “Dear Lord, urdle, flurble mup.”

This little conversation is a good illustration of chronics homeshooling.

An article here asks a mum considering home education when she has chronic illness to think of a few things. It essentially says, pray, have a good husband and get some good fellow home ed mums on board to help out. It’s a good plan.

Yesterday a fellow home ed family came over. I’m still pretty crashed from the mini-stroke last week (TIA) but the mum of this family is completely relaxed around me no matter how wrecked I seem. She makes no fuss and simply does her bit around me. She takes the mic and allows me the space to do stuff when I think I can give it a go. Friendships like this are rare and to be treasured (so thanks Jo!)

This is another excellent article looking at a number of seriously chronically ill mothers coping with home ed

Then you must trust. While riding the trust you can plan for what curriculum you need to buy because you aren’t well enough to make it, teach it or organise it. All I can say on this is God Bless America! The UK has a shorter history of home ed (although it’s been around over 25 years) and has almost nothing of quality home ed resources sadly, (I think the awful national curriculum bares a lot of the blame – thanks Maggie Thatcher!). So, look at the American stuff. There’s a lot out there and yes it’s expensive (compared to making your own) and yes, most of it needs shipping and therefore costs are even higher and add the recent sneaky tax on educational materials in the UK and you’ll be in debt – but God never said debt was a sin; whereas not providing the best education you can for your children can be. You do need to plan your debt so you can pay it off, but I haven’t found a way of importing stuff without needing time to pay it off. It’s still a good option done with prayer, discernment and care.

Find ways to make resources do more than one job. Find ways to make cheaper resources when you’re well enough.  One of the things with most chronic illnesses and even acute ones like cancer, is there are good moments when you are more capable. Use them as best you can. I use those times to make and plan stuff that when I’m too sick I just can’t do.

But wouldn’t it be easier to sent them to school?

Not necessarily. First of all you would need to have a school that meets your children’s needs so you don’t have to undo the damage and do the home ed after school because not much ed has taken place in school. (Been there, done that; don’t fancy a repeat) Then  you’d need the energy to take and collect the children every day and cope with whatever fall-out the day has in store for you. That was hard enough when I was well!

Giving your children the best education you can give them is worth a lot and not having to undo stuff from school is a blessing.

Finally, all you can do is plan, pray, trust and take it one day at a time. I know more than one chronically ill mum who home educates children with some serious educational needs such as severe autism. Let them be an inspiration- not a moment of “Yikes! Why can’t I be that good?”

Language Arts Beginners Lesson Pack download

click picture to go to lesson pack

I have set up a 60 page language arts lesson pack for children aged around 6 to 7 or slightly older. It incorporates Arabella Buckley’s Bird’s of the Air as a listening and basic comprehension lesson. Listening is an important skill that children need to learn to be able to learn other things. Charlotte Mason used “living books” such as those written by Buckley to read to children and have them narrate back in their own words. In the lesson pack there is room for doing that but also simple question and answer format for early writing practice.

I’ve included an introduction to Montessori grammar with cut out sentence strips and cut out symbols at the back.

I’ve tested the pack on my youngest and she did well with it. She is very dyslexic so it does seem to suit children who may have

extra challenges in learning. I do have the proper grammar symbols and Heleyna loves using them, but you don’t absolutely need them.

The set only costs $2.75 so it won’t break even the most frugal budget.

It introduces nouns, proper nouns, articles and prepositions – which sounds like a lot for a 6 year old, but the visual and manipulative approach with the symbols seems to work remarkably well.

Click on the picture above to buy and the sig below to see everything.

Dysautonomia – what did you say that was?

Here’s quite a good explanation of the basics of dysautonomia. I notice she includes CFS (chronic fatigue syndrome) in the list. There is good science behind the idea that fibromyalgia is dysautonomic as it looks to be a form of hyperadrenergicPOTS. But I wasn’t aware that CFS has been included. It’s not that surprising though as some doctors (one in Australia that I can never remember the name of in particular) insist that up to 96% of patients with a dx of ME/CFS have some form of dysautonomia. But as Ramsay felt that a dx of dysautonomia meant a patient couldn’t have ME it’s a bit confusing.

Symptoms are very varied to the point where it has been said that each patient is different and certainly my Cardiologist agrees with that.

Death rates have not been measured although it seems to have a similar rate of suicide to other poorly treated chronic illnesses and there are a number of reports of sudden death similar to those associated with ME/cfs. As many of us have serious lung and Blood pressure problems it doesn’t seem that surprising that deaths happen. Studies in ME/Cfs show that heart failure is the number one cause of death with suicide coming in joint second with cancer – some more unusual cancers being oddly common among ME patients.

Talking anecdotaly I have come across a few people with a single diagnoses usually POTS or IST without blood pressure problems or anything else. The symptoms of POTS and IST can be pretty horrible on their own but there’s definitely a difference in degree compared to those of us with ME/Cfs and/or fibromyalgia to go with it.

Most people I know with ME have some kind of orthostatic intolerance. Mine is pretty bad these days. Can’t stay upright for very long without becoming nauseous, light headed breathless and blacking out (pre-synocope).

I don’t know what the end result of any research will be. There are tentative (poorly funded) moves to separate out the various forms of ME to get more accurate dx and hopefully treatment. It will very likely show that dysautonomia is either a form of ME or caused by ME or isn’t ME, but is dysautonomia.

One day we hope there will be suitable treatments that can put us into remission. But so far, that just isn’t the case.

Saw a GP today and hit the “they don’t know what to do” wall. Back on steroids but feeling pretty fed up. She did say she’d talk to my usual doc but she really wanted to refer me to another (insert very rude word here) neurologist. I refused.  Presently sofa’d – hope the steroids help.

Malala – a true heroine.

Watch as Malala Yousafzai tells Jon Stewart what she planned to say to the Taliban man who came to kill her.

She was shot two years ago when she was 14. She nearly died but the British army flew her out and brought her to my local hospital where she was treated and is looking very well!

Now 16 she is an amazing young woman.

The complete interview is here:

Making the Montessori equipment do more than one job.

Looking at the Montessori online shops like Absorbent Minds it would be far too easy to spend an absolute fortune making sure every lesson on every album ever downloaded was covered as prescribed. So here’s what I’ve been trying to do.

I have not gone back to the online shops. What I don’t see can’t tempt me. I remember that I still owe Josh money for the Montessori stuff I did buy!

I did work out over a long time what we needed for the widest possible work using the least possible equipment.

So. I have a lot of bead stuff. They are good for all the math work the three children do, including the Life of Fred books. They are also useful for geometry.  Heleyna (and the others) can make triangles, and other straight sided shapes with the bead bars.  She can also make angles with them. This means I don’t need the rods and have used a free download of geometric sticks for extensions from Livable Learning.

I’ve laminated a lot of the sticks and added small magnets for work on the whiteboard. If you do this a tip if not to put the magnets too close to the end

of the sticks as you need to be able to overlap the sticks for making shapes and some angles.

A lot of the “flat” Montessori materials are available as downloads to be printed on card and/or laminated. The decisions I have made on this, have been with and eye to the sensorial aspects of Montessori. I have bought things that are important for how they feel as well as how they look so the children learn through their senses and learn to train their senses in things like texture and weight.

I haven’t bought a lot of sensorial materials so I want the children to use other things around the house for that. I bought a set of glue jars  which can be used in various ways; add different beans for different weights. Add hot and cold fluid for baric touch (it’s not quite the same but it works). Different smelly things can be put in them and by  filling them differently with orange lentils they make sound shakers.

We use the trays as work space. Heleyna, in particular is an “all-over-the-place” kind of person. The little rim of the tray gives a gentle boundary to her exuberant nature as she learns.

The box of prisms for the brown stair can be adapted as spindles and rods for measurement of angle. We’ve also use them to make a narrow line for Heleyna to walk along to practice balance.

They are 1 cm² by 10 cm so they make great little measuring rods too. Heleyna has also used them as building extensions with the cubes and brown stair.

I’m sure I’ll have more multi uses as time goes on.

As I have the hollow cubes instead of the pink tower we can use them not only for tower and stair models and extensions but for pythagorian rules and for measurement of volume. They are also good for listening skills as the children can make the tower with the hollow side outwards and then blow into each cube listening for the faint change in tone as they blow from small to large and back again. We also use them for listening by banging them with a stick for different tones. Heleyna like to play a hide and memory game with them too. Memory games are very useful, especially for children with dyslexia.

Finally there’s a great way to save money on Montessori models by making them yourself from play-doh. We’ve been studying the earth in geography. The layers of the earth model is £10 + at it’s cheapest. We made one out of play-doh.

‘Scuze my dd’s scary stare there!

There’s a lot more that can be made with play-doh; I have big plans 🙂

Dysautonomia Awareness month

In the slightly strange world I inhabit I know quite a few people around the net who either have some form of dysautonomia or have one of the many co-mobidities that we have and so know about dysautonomia, even if they don’t have it. This can give me the false impression that everyone has heard of it and at least, has a general idea of what it is.

Dysautonomia isn’t well known and part of the reason is that it is supposed to be rare. The most common form is POTS with NMH; that is postural orthostatic tachycardia syndrome with neurally mediated hypotension. The people with this get tachy when upright and their BP can drop like a stone. A lot of people with this have low blood volume.

Hyperadrenergic POTS is even rarer. We get tachy when upright and our BP will shoot upwards and for those of us on the “combo” end of things it will nose dive and shoot up again. It’s because the normal fight or flight responses are stuck on “ON” mode. This comes with the added complication that while we seem to be pumping out the adrenaline (ephinephrine) which is changed into noradreneline (norepinephrine) it might never really make it to dopamine, or if it does, not much dopamine is made. If it is made the uptake is poor and if the uptake can cope even a little, the re-uptake is bust. This is probably the root of my tremor and possibly the myoclonus too.

The depressed immune system means we have fun with infections.

Then in a small corner of rarity is IST – inappropriate sinus tachycardia. We have tachycardia all the time. In my case it’s around 100 (without meds) when I’m sitting still and can get down to the high 80s if I lie still – but often can’t do that. Upright it can get up in the 150s which is mild compared to some folk.

IST is thought to be a form of POTS but the medical jury is still out on that one. As there is very little research on IST – less than other POTS forms, it seems unlikely we’ll get many answers any time soon.

Other symptoms are brain fog – I hate it – confusion, memory loss, visual changes and auditory sensitivities.

We also get seizures. POTs related seizures are common and horrible. I had a one off the other night – thank God it was a one off. Seemed to be because I was particularly shattered. Not infection related this time. And that’s another problem – we don’t get seizures for one reason, we get them for a load and doctors like to call them “idiopathic” meaning they don’t know what causes them. They don’t respond to anticonvulsants unfortunately, so we are left with no treatment.

Dysautonomia ranges from mild through to severe where people are mostly stuck in bed with NG tube for feeding and sometimes oxygen. On the nasty end dysauto can be fatal; respiratory failure, heart attack, stroke seem to be the lead CoD.

This is a reasonably good article on IST as part of Dysautonomia.

So what does getting aware mean? Well first of all – if you have someone in your life with this disease, say a prayer for them. Be patient with them when they are acting spaced, foggy, tired or just off. Don’t assume that someone who is trying their best to be as normal as possible can keep that up every day. Crash days, weeks and even months happen. Be kind.

If you have money and know a good charity or research thingy then please do donate. We need research if we are ever to get good treatment, let alone a cure.

Archimedes lessons

Having done some of the basic experiments as part of the lesson pack following Archimedes and the door of science (book here) the children have also made the water clock, which is pretty simple to do. You need to make sure the pin holes in the paper cups are big enough for the water to drip though or time will stand still!

From there they have been learning about Archimedes experiments with number patterns. So we have been making triangle and square numbers and then cube and pyramid numbers. It was a good excuse to get out the bead material and the thousand cube box. 

It’s a lovely way to see and present some mathematical concepts.

The children seem to get more out of the lessons when they can stop writing for a bit and make something.

Heleyna tends to join in with those bits as well, so she’s getting a bit of an introduction via the work her older siblings are doing.

Much fun was had.

Home Education: Learning independence through spontaneous activity

I am reading The Montessori Method (free ebook) by Maria Montessori.  At the root of her method is the idea that children will find things out for themselves and that they desire and need independence. By constantly doing things for the children the parent or teacher is undermining the child’s ability to learn those skills for himself.

She has an interesting view that those who require servants are lacking in ability. Her view that the person who needs help because he has a physical disability is no worse off than the prince who needs help dressing because of his social status.

We habitually serve children; an act of servility toward them, but it is dangerous, since it tends to suffocate their useful spontaneous activity.

She differentiates between true service of others, such has assisting them to reach the independence they need and servility which is unhelpful at best and demeaning at worst.

She decries the mother who feeds her child without ever attempting to model eating herself or to help the child learn to hold and co-ordinate the spoon.  I think there’s a couple of things that cause this problem – which still very much exists today – and one is fear of mess. I have seen mother’s who can’t abide the phase where the child is trying to self feed and makes a right mess of himself and anything within a few yards radius.  There’s an underlying fear of dirt, I think.

The other reason for insisting on feeding a child who wants to feed himself is that awful modern thing of being afraid the child is growing up and won’t be a baby much longer. I have seen mothers who, can’t stand the idea that their youngest child is no longer a baby and they have decided (often without a reason) that there can’t be another.

Montessori bluntly calls mothers who won’t allow independence “not a good mother.”continuing

She offends the fundamental human dignity of her son, – she treats him as if her were a doll…”

Ouch!

I have to say, however strongly Montessori words this, she isn’t wrong. I worked with a class of children aged 4 to 5 and then the next year up when they were aged 5 to 6 (just before I got ill) and was amazed that most of the children couldn’t dress themselves. I don’t mean difficult buttons or laces, I mean putting on underwear and pulling on a sweatshirt. They couldn’t do it. The post-PE shambles, of trying to get 30 kids dressed, was astonishing to me.

Montessori says;

Who does not know that to teach a child to feed himself, to wash and dress himself, is a much more tedious and difficult work, calling for infinitely  greater patience than feeding washing and dressing the child oneself?

This is true. I am much more able to get the children to do things themselves when I am more with-it than when I’m so tired it just seems quicker and easier to do it myself. But it’s a bad habit to get into and one that takes a great deal away from the child.

I remember my friend telling me how she had picked up her son’s friend from school one day (they were both 10 at the time) and on the way home in the car the friend announced proudly that at school that day they had learned to cut an apple with a proper knife. Her son was unimpressed as he made lunch most days, cutting and preparing fruit, bread and whatever else was required with the right knives for the job and had been doing so for some time.

Children who are allowed to be capable are capable. But it takes time and commitment from the parents – lots of time, lots of commitment, at least to begin with. But soon enough a five or six year old can do a lot for themselves and a ten year old can do a lot more.

If you take the time and teach your children to be independent in what they do, they will more quickly learn independent thought as well, finding things out for themselves and asking questions about what they find.