Friday, 30 August 2013

eye poking, toe walking, osteoporosis and Vit K

Well we have had a really exciting week. My dear sister and mum and dad, came over to look after Ed for a day while the rest of us had some 'normal' family time which we spent with my dear brother and sister-in-law on their amazing boat - great fun. The good news was that Ed was apparently really well behaved and all had a good time. Latter in the week I took Ed and Tom for a visit to my parents, after all, Ed appeared to have turned a corner. How wrong can you be, he was so destructive, pulling things down, throwing things on the floor, screaming and crying for reasons unknown, the house and garden looked like a bomb hit it. In a weird way I was kinda glad, because it reminded me how he used to be everyday, and the difference now is extraordinary - not all the time - but its growing. I used the time at my parents to go to the 'farm' and buy some lovely raw milk. I mention it because milk will be my next post, and whilst I was there to calm him down I took a walk round the farm, as they suggested on a poster on the shop door. It was just heavenly, Ed had space to run off which he did happily. And we had a nice little wander around looking at their organic harvest and chickens. What struck me other than the peace and all the Little creature was the smell. I have been round cows and they stink, but not here. All I could smell was warm meadows and chamomile, even treading through the cow muck, it was unbelievable how nice it smelt. The reason is they feed their cows on grass and hay in the winter, not corn like the rest of the milk you buy, and trust me when I say it, their s@*t don't stink! In the world of autism, as you may have noticed, a lot of attention is paid to what comes out because its a good indication of what is happening inside. Well what is happening inside these cow and their milk is different to your normal intensively farmed animals.

Now on to a subject that literally made the hair on my neck stand on end with an eureka moment.

I talked about sensory things very briefly last post, two sensory thing Ed did that I didn't mention where toe walking and eye poking. Just as it says, he would walk on tiptoe even in shoes, and poke himself in the eye really hard, not in the eyeball but between the eye and eyelid. To see this behaviour is very distressing - because something is obviously very wrong, but the powers that be just say, well, some of them do it. It was at this time I found that google did a better job than the NHS. As I researched it I came across blood crystals, the bodies of our autistic children are very different inside, and the blood works done on some of them show crystals slightly smaller than a blood cell. This really got my interest and I research blood intensively. Apparently our blood cells are shaped in the way they are so they can bend and twist through very tiny capillaries in our bodies to nourish all of us. In autistic children, their blood cell are sometimes not so flexible and have a hard time moving round, they also have these weird crystals floating around, from what I read it was common in our children. This got me to thinking, if these crystals pooled in your feet like fluid does in all of us, wouldn't they pool in the bottom of your feet? would this feel good? or would it feel like walking on broken glass? and if you had to walk through broken glass wouldn't you do it on tiptoes? Also if they were moving round round the wee vessels in and around your eyes wouldn't it hurt and maybe you would poke it to ease the pain. If you could get rid of the crystal would this behaviour go? So me and google got together, there are all sorts of ideas about why these crystal form, but the one I went with actually made the hair on my neck stand up when I read it, it was a scholarly article written about the many roles of vitamin K. I spent some time this morning to find it but couldn't, so I will post the link to it latter when I find it (and by that I mean when the children are back at school!)  In the meantime, the main thrust of the article was that calcium leaks out of the bones if there isn't enough Vit K to keep it in place and forms crystals in the blood. If you have enough Vit K, it escorts it back to your bones. Now, there are some natural sources of Vit K that you eat, but generally its something that is made in your body not by you, but by your friendly intestinal bacteria. The sources of food you find it in are animal fats, cream, full fat milk, lard (not the crappy store bought rubbish but the nice homemade stuff) etc. So, lets look at not just our autistic childrens diet, but the diet that we are all being recommended which is low fat, hence low in Vit K. I have a 30 year old friend with the bone density of a 60 year old, it's something that modern women suffer from today, its called osteoporosis, where there isn't enough calcium in the bones to make them strong. Even if you take your calcium supplements if you don't have Vit K, it will just leach out of your bones. We are not making it ourselves anymore because our internal gut flora is messed up with anti-biotic and unhealthy diets. Dairy is the one of the first foods you are recommended to remove when your starting an intervention with an autistic child, and by doing so, you are cutting out the main supply of Vit K. Within those animal fats you also have all your fat soluble vitamins that your eyes and teeth need to be healty,  just look around at our children and you can see they are not getting enough. I haven't put this very well, its a complicated interelated subject, but I hope you can all think round this  and see how far reaching and important it is. I completely understand that some people are intolerent of dairy products and so can't eat them, and to them I urge you to supplement this important and overlooked nutrient, I am sure as time goes on they will discover all sorts of other functions that its does.

So Richard was very happy when the clotted cream was back on the table, instead of telling him he was going to have a heart attack, I was telling the other children to eat up because it was good for them. So the full fat milk and proper block butter in a butter dish came back. The roast potatoes went in goose fat, and that was all about a year ago. I also introduced Vit K and Vit D supplements (because the two work together, and by the way, you dont make Vit D with sunscreen)  in Eds diet to give him a boost, and the eye poking stopped and hasn't come back. The toe walking stopped as well, very rarley he will toe walk in the morning, but not for long. I see it as proving exactly that the toe walking was because the crystals were pooled in his feet, which is why if it happens, its in the morning. I don't supplement anymore with these vitamins, just rely on a natural source and I don't put sunscreen on him unless he will be out in the sun all day. Believe it or not, I just rub virgin coconut oil in my red headed angel, and dispite the fact he is out more than he is in, he hasn't burned this year. I read on one of my many heatlh blogs that other people have found that they have stopped burning in the sun once they started consuming these animal fats back in their diet. So, next time you go shopping, don't feel guilty putting that butter and cream in your basket, look at those poor folk doing what they are told, eating their awful margarine getting fatter and iller and feel sorry for them. X

As a post script, sorry for the grammer - I think it and type it, and spell check isn't working again!

Monday, 19 August 2013

sensory issues

Okay, so as promised some real info. I thought the best place to start was on sensory issues, as its a topic anyone can relate to and it explains a lot of some of the more bizarre autistic behaviours. A few months after Ed had been diagnosed, I spoke to the wife of one of Richards friends who just happened to work with autistic children. I can still hear her voice, 'Liz, you have to sort out his sensory issues before you can do anything.' My ignorant reply was 'I am really lucky he doesn't have any.' 'Liz, he has, you just don't know what they are!' How right she was.

So you have five senses, taste, touch, hearing, seeing, and smell. There are two other ones I had no idea existed till autism hit us, they are vestibular and propriception. Vestibular is the sense of where you are in space, all the wee bits and bobs in your ear tell you if your up or down, propriception is a little more difficult to explain, but its knowing where all of your body parts are in space. So, if you were getting in a boat from shore, you would need to know whereabouts in space you were and where all your  body parts are as you negotiate getting in a wobbly boat. If this doesn't explain it fully enough tap it in google, there a books written on the stuff.

When you experience through these senses there is a kinda volume button. You have hypo-sensitive and hyper-sensitive. Hypo would be the sound all turned down, so it doesn't register, and hyper would be the sound cranked all the way up to past bearable. On this volume button, just to make things interesting, you can be anywhere between the two extremes and to make it more interesting, you can have a mix of both. For example, Ed is hypo-sensitive to cold. He needs to be getting to frost bite cold before it registers, but he is hyper-sensitive to hot. So now you have seven senses with a range of perceptions and you can start to see how it affects them. I have heard of children who have such sensitive noses that they can smell everything in the house, parents have to be careful with what they cook and throwing things out. Imagine smelling everyones body odours. I have heard of children who have such sensitive ears they can hear your heart beating. Imagine being that sensitive and being in a super-market, with the noise of the chiller cabinets, the freezers, the noise of the overhead lighting let alone the music and noise of the customers. I have heard of children who see everything in its entirety in a room. This doesn't sound to bad, but let me tell you of an experience I had during my art foundation years. We had just had an intense session on typography, on the way home all the letters on the shops and posters and car number plates were all jumping out at me, it was almost painful. I had to look at the floor to get home till my brain calmed down. Some children who are dyslexic have difficulty reading because the words literally jump around the page. Children who are so sensitive to touch that they can't bear to be touched, imagine wearing clothes when you feel like that, what would a woolly jumper feel like? Those are example of hyper-sensitivity which I think is the worst, but on the other hand you get behaviour aimed at just feeling anything - which generally verges on the dangerous. Also, if you can't feel it, how do you know its time to run to the bathroom till its to late. Its only when the pooh is actually coming out of his bum that Ed is aware of it, thankfully, those days are ending with the kefir water. So just let that all sink in. What you get from that in terms of behaviour is hand-flapping, spinning, jumping, climbing, hanging, switching things on and off, eating only crunchy food, eating only smooth food, eating spicy food, or bland food, eating only food that is green, or yellow or whatever - see where I am going, the result is weird behaviour. So you need to track down their behaviour to see why they are doing it, and then you will start to understand their sensory needs. Quite often, the sensory overload is so great that they can't cope anymore and this results in what is know as a melt-down. A melt-down is a normal childs worst behaviour - but on crack-cocaine! So its important to understand your childs sensory needs to prevent this. And so, to offset all this craziness, to feel safe, our children really like routine, something they know. So, we go this way to school, down this road, past this thing, maybe we like all our things just so, or our food laid out in a certain way or whatever. Something predictable in their unpredictable world. You see, they experience life in a totally different way to a normal person, and they each experience it in a unique way. Yes, this is true for all of us, but for them its more extreme.

Edward is hypo-sensitive to touch, so he likes to be in tight spaces. He like to get between the bed and the wall, if you sit down he puts his hand under your bum. He likes to feel the very end of his hair because its spiky, he likes to feel grout between tiles. I guess that's why he used to smear his pooh, because it was gritty. He likes to climb and hang off things, curtain poles for instance, this gives him a nice feel of his propriception faculties through his arms. See when you know why they do something, you can be understanding, and help. You may have seen children round town with great big headphones on to protect their ears, or glasses to cut down on what they see, or grown children jumping for no reason and though, that's weird. Well now you know why, and looking at just this one issue, maybe you can have a glimpse of the minefield the parents of autistic children tread everyday, one miss step and MELTDOWN! BOOM!

Thankfully, with the interventions I have put in place, ie, NAET, homoeopathy, supplements particularly zinc for this, Epsom salt baths, kefir water and coconut oil rubs, Eds sensory issues are coming under control, and at the moment, things are good - well, good for us. This is a very complex issue, hope I have made it a little clearer. xx

Sunday, 18 August 2013

2 steps forward 1 step back

Sometimes even as you say something you know you shouldn't in case you 'jinx' it. And so it was on Friday. I had just bashed out my last post before trotting off for Ed. I arrived to find him licking the mat at the very front of the school - not a good sign. He seems happy once he sees me, and I thank all the staff till next holiday (when I darken their doorstep again) and pick up his stuff. Attached to his changing bag is tied a plastic bag - again - not a good sign. We get home, happy enough, just as I am putting his kit away I hear splashing water on the floor of the utility room. I rush in to find its not water but wee, Ed is standing there peeing on the floor, as he does so he pulls the back of his pant down to reveal a great big pooh which I am too late to do anything about. As it hits the ground it breaks in two, as he steps forward to get to the toilet, he treads in half of it with his feet covered in his trousers. Bloody marvellous, at least now I have a full load.

Spent the weekend thinking about this, sometimes you really wonder why you bother. Then today he spoke two new words. Sat on the toilet waiting for another pooh (anyone envious yet!) he clearly says 'pooh' twice. And in bed, after reading him 'Freddie and the Fariy' as he was turning the pages and reading it for himself with his own funny noises - he started making monkey noises at the picture of the monkey! Yeah! it may seem a little trifle of nothing, but in our world, even just looking you in the face is something to treasure. From little acorns grow big trees, hope is still alive.

Tomorrow, he has a fun day, promise to post something informative as opposed to just what we got up to. xx

Friday, 16 August 2013

the end of the pooh pant bucket?

I know I don't normally post two days in a row, but I am putting off an awful job, and that awful job is washing out all the pants in the pooh bucket of disinfectant - so who can blame me! Yeah, I know, I haven't talked about pooh for a while and your all missing it. Well, the funny thing about my pooh pant bucket is - that its not full. It just has a few pairs of pants from a while ago which have been forgotten because I haven't been putting in the 2, 3, sometimes 4 pairs of pants in a day. See, I like a full load, then I wash them with disinfectant again, and then put them on a really hot wash. And I don't have a full load yet. And the only reason I can think of is my new thing - water kefir. My medium boy has had a bit of a runny bum recently, but I think I over dosed him and myself because it tastes so nice. Ed on the other hand has about an inch in the bottom of a cup of cranberry juice, more or less every time he has a drink. The effect is that the other day he did the most perfect pooh which left his bottom clean as a whistle. (Are whistles that clean?) And that was a dear diary moment.

He has also been a lot more calm, I mentioned in my last post he has been singing. I also need to say, that yesterday though, I found him at the front door of the holiday club he goes to in the summer, only wearing his vest and pants. He was upset that he couldn't turn off the x-box the other children were playing with, so he was in a very cross state, licking the mat that everyone walks on when they come in! So if he doesn't end up with the runs, this stuff is really working. The lady who gave me the kefir grains, puts them in a cupboard to do their thing, however, I have moved mine to the window sill. I love watching them bubble and bits float up to the top and then down again, its like a living lava lamp. I think that other than the fact all people dealing with dealing with autism, say first thing is to restore the bacteria in the gut, that the magic of them is lost. I read somewhere that one of the things that our friendly bacteria do is produce B12. B12 is the energy vitamin, and the one our brains need to work. Of course it does a lot more but that is it in a nutshell. So, I kinda think in a funny way to most people - the apple doesn't fall far from the tree - I thought is that why we are suffering with dementia like we are. People start off normal, anti-biotic slowly kill all our friendly bacteria through the Dr and our hormone injected anti-bacteria treated industrially produced meat and dairy. We have anti-bacteria this and that in the home which only kills 99.9% of germ (that other .1% always bothers me, if that's the one we cant kill, what the hell is it!) and slowly slowly our internal flora dies, the weeds take over. The yeast, unfriendly bacteria, parasites etc and our B12 stops and slowly slowly we fade away. We have stopped eating food as we have done for centuries, gone is the raw milk and cheese and butter, gone are the fermented veggies we stored for over winter, gone is the sour-dough bread. I know I am starting another rant, but something deep inside tell me that our autistic children are a symptom of something that has gone awfully wrong in our modern world, and that the rise in their number is linked to the rise in all our modern day woes, cancer, dementia, diabetes, obesity, addiction, the list goes on.

I follow a lady who produces a blog about cultured foods, she was really sick and bedridden. These bacteria rich foods brought her back to health. She say that each of them have different types of bacteria in them, and to reap the real benefits you need to have kefir, cultured foods and komboucha. I have already seen the benefits form kefir, I know that's the only thing that's changed over the past weeks, we haven't had any more NAET treatments - yet. So, I think I am going to try my hand at culturing some food and hope he eats it.

Next week is the end of his holiday club, and we have a full week of NAET treatments booked. Look forward to posting something amazing at the end of it - fingers crossed xx

Thursday, 15 August 2013

for the newly diagnoised

As we are coming to the end of summer, we seem to be plauged by wasps. I just had the wasp man out about 3 weeks ago to get a nest right under Toms window, they were getting in under the lead flashing and at night when all was quiet you could hear them eating away at the ceiling. I thought it was a neighbour who had another nest, but no its us again. This time they are in the roof and back under the lead flashing. So anytime we leave the back door open in they come, big nasty things that kinda face you down. I have a technique where I summon up the godess in me ( a technique the dog whisper uses!) and shout 'out!' at them pointing to the door. Mad as this seems, it works 9 out of 10 times. Yesterday I was there in the kitchen shouting 'out!' in my most commanding voice, when a little peewee voice starts up. It's Ed, saying out and pointing at the door! He was copying me, and I really felt a connection with the little chap. Generally he suits himself, we all fit in round him as he wanders round in his own little Ed world filled with all the mad stuff he likes and does. But for that small moment we were together 'outing!' a wasp, and I felt like it was another step forward for him away from the nightmare place we started from.

One of the men that Richard works with asked him if I would mind speaking to a friend of theirs who has just had their eldest child diagnoised at two and a half, they have just had another baby. In his words they are 'devastated' and he wondered if I could help them. Of couse I said yes, though I doubt they will contact me. I spent the last weekend wondering how was the best way to go about talking to them, and remembering how it was for me, and even though its a few years ago and we are on a road to recovery, I don't mind telling you the tears flowed again. How do you tell someone to kiss the life they once pictured for their child and themselves goodbye and face down the spector of autism? How do you tell a young mother with a new baby that she is going to have to dig so deep that there will be little left of her, that she has the fight of her life on her hands - that she has to fight it and win it? How do you do that and give her hope that it can be done and it is within her to do it? Well I have been pondering that for days now and still have no answer, but these early weeks of having a diagnoisis I think are so important. Its a time of greiving for the life lost, and planning for the life given - and there is no doubt in my mind that the 'state' needs to do so much more at this time than they do at the moment.

I absolutley believe that we are all stronger than we can imagine. I always knew I was a strong person, but autism has shown me just how strong I am emotionally. Ed is fiercely strong physically, I often contemplated what made him SO strong and my conclusion is that he doesn't know he is not. Because he doesn't think like us, if he wants to move something he does it without thinking that he can't. Have you ever watched the pictures of those great big men climbing Mount Everst, and how pleased they are with themselves? Have a look behind them and you will see men half their size climbing that mountain with a mountain of gear on their backs that those great big fellas are unable to carry. How is this possible? I think it's just because they believe they can do it and those big fellas think they can't. Henry Ford had a saying "If you think you can do it, you probably can. If you think you can't do it, you probably can't." In those wise words you have a blueprint for life. Because most medics think that autism is genetic, there is nothing to be done about it. Those that do nothing, get the same back. Those that believe they can do something - and do it, get something back. Its all in your attitude and action. So, my advice for newly diaganosed is 'Educate yourselves' there is a lot you can do, but what you do needs to suit you and your family and the needs of your autistic child - which just to make things more difficult, are all different. And in your quest for knowledge, don't just believe anything, test it. Does it make sense, does it feel right, does it make a difference, and if so do it. Pray for guidance, this thing has come to you and you can find a way through. You know this week has not only seen Ed "out!" a wasp, but he has started singing, the noises are the same that you'd expect from a baby, or maybe a zombie movie, but there is no doubt that he is singing. Can't wait to hear what he has to say. x

PS Spell check isn't working so sorry for the mistakes x

Friday, 9 August 2013

this little piggy went to ...

Well, I apologise for my rant in the last post (though I'm right!) but just to finish up, what about the brainiac who put a nuclear reactor on a well known fault line, just above sea level in a tsunami area? How could I forget that one?

But hats off to the inventor of Velcro, the washing machine, hoovers, fridges, and decent sanitary ware for women.

Apologise also for my poor grammar. Even my 14 year old has complained about it! Well, I am a child of the '60's and we were just taught to write, which is exactly what I do, I sit down, type, spell check, post, job done.

So, whats new in our world. Ed has had a series of unfortunate events. On Sunday, whilst washing out the latest offering of poohy pants, he came out of the living room like a bat out of hell, screaming. He ran around all the house upstairs and downstairs screaming in obvious pain. I had no idea what had happened and being non-verbal he couldn't tell me. Eventually I managed to get his thumb under a cold tap, it wasn't cut but he held it tightly in his hand then wrapped it in his top. He calmed down eventually, but, don't touch my thumb! As the day drew on, I thought maybe he had broken it? what should I do? Well, I slept on it, and it seemed a bit better in the morning, and I think that he probably got stung on the thumb by a wasp. On the following day, I had the most wonderful time. We dropped Ed off at his holiday club, and I spent the day basking in the glory that is my sister. We pottered about town till it was time to get the lad. Thankfully we were early, because there he was crying at the front door. What a disaster, he had bitten a member of staff, pulled some children's hair, and then spent the rest of the time crying by the front door. The sweet lady who runs it said she knew I was having a nice time with my sister so she wasn't going to call me. So we had to pick up Ed, who wouldn't walk or put his shoes on. When we got home, I noticed he was walking funny, trying not to put weight on his big toe. So my darling sister held him down while I had a look and it just didn't look right, it was swollen with a big blister above it. Thankfully I have a wonderful Dr, who gave me an emergency appointment, and told me to my surprise that his toe was infected and the blister was pus. He gave me anti-biotic and off we went, now the infection was out, Ed was much happier, but still not walking on his toe. Well, that explained his bad behaviour which made me a little happier, though there was no way on this earth he was going to take his medicine. The next day was with children in action who had a fun day at Thames valley adventure park. This place is just heaven for Ed, its a fantastic playground just for special needs children and what they don't have isn't worth having. I knew he would have a great day, so I just warned them about his toe and off I went. Latter that day, when I went to pick him up I was puzzled to find him sat in a buggy. The sweet girl who was looking after him had apparently been pushing him around for an hour or so. As I looked at him, I asked, "what happened to his toe?' Well, he had scrapped all the skin of his little toe just above the nail on the same foot as his bad toe. Poor little chap, three things in three days. Thankfully, I had been back to the DR and picked up some anti-biotic cream for his toe! Now, my rant on my last post was spurred on by the pain in my toe. I had been pushing the shopping out to the car when I kicked the back wheel of the trolley. God it hurt. I thought no more about it, till it felt wet in my sandal. Looking down I had really hurt myself, the nail on my little toe is no more, hence when I sat down to post something, with 40mins till the boy came home from his last day off school, things didn't come out quite as they would have under more favourable circumstance.

On the whole, our summer holiday is working out OK, minus the odd toe and finger x