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Friday, 29 November 2013

what about mum?

Think back to a really busy time in your life, where literally you were in a whirl. When you look back, do you see it with a different perspective, see things in a different light to how you felt they appeared at the time? Well, I kind feel like I am just coming out of my whirl.

Yesterday, Eds school had organised a tasting of a new menu for dinner time. Due to budget constraints, the dinner ladies who have faithfully served our children their lunches over the history of the school, will serve their last Christmas dinner in a few weeks time. The food will now be from a central provider coming hot from a 'hub' school. Of course with the digestive issues that most special children have, I wanted to go along and make sure that they weren't being served - well - crap!
So mid-day finds me shooting off up the motor way to this tasting and question session. The school secretary of the hosting school greeting me with kind perplexity. After about 5 minutes enquiry she informed me very nicely, that I was at the wrong school! They were the hub provider, but, for some reason the tasting session was in Marlowe, another 20 mins down the road. How had I so grossly misunderstood that school letter? Well, I am just recognising quite how high my stress levels are/have been.

A few weeks ago, one of my darling brothers married his long time girlfriend. We set off about 8 in the morning for a noon wedding. Even though I was 'having the day off' (because Lauren had very kindly agreed to look after Ed till we got back the following day), and I was spending time with all my family - who I adore, my black mood (which had settled on me with the stress of getting out of the house) didn't lift till my darling sister appeared at the reception in the same dress as me. Long story short, for some reason we thought it would be a good idea, but she had changed her mind. But, seeing her in that dress,  I just laughed and laughed and had the best of times imaginable. On the drive home, I was going over why had I been so miserable in the morning. This along with lots of other 'little things' has really made me question myself. So there I was, at the wrong place right time. 'Bugger it', thinks I.  On the drive home, the mud settles and I realise that for a few weeks now, Ed has just been amazing compared to his normal self. I can see just how stressed I really have been, but when your right in the middle of it, you just put your best foot forward and get on with it. Over the past few weeks as home life has been less mad, my adrenaline has obviously stopped pumping. I feel like a bear in autumn. just want to eat chocolate and hibernate. I thought about my role in the family, dragging everyone through the day, and thought 'hang on a minute - what about me?' So I had a bath and washed my hair, which may not sound like a big deal, but honest - I can't remember the last time I did that.

You may be thinking what are you saying liz? Well, to those who deal with the families of disabled children, be kind. Just because you told us, doesn't mean we remember. We need constant reminders, clear directions and instructions to cut through our fog. And for my readers, from now on, I intend to publish informative pieces. Because I have been told it helps to back up my finding (as they are generally contrary to everything we are told) it takes up quite a bit of time. So, from January onwards, I intend to publish just once a month. To catalogue the important nuggets that have brought me to the point where I can actually see Ed behave normally - sometimes (and hopefully more often in the future). What about me? I have finally committed to become a certified NAET practitioner. This monday I started on the diploma course which will take me there. I will no longer be so emotionally involved in the outcome of my family -  horse to water and all that! Will still drag them through the day, but have my eyes on the prize of fulfilling my life as opposed to others.

As I have been writing this, Ed has come home. My lovely escort who does such a great job of getting my wee boy to school and home again, told me that the teachers had asked him to tell me that Ed has been great all week. That just goes to prove to me what I had already concluded. My whirl is on the final rinse and spin. The child that had brought me to the very brink, is now slowly becoming a source of joy. He came in happy as a sand boy, changed into his PJ's by himself, is eating his raisins and apples, having dug the Room on the broom DVD of the shelf, and is watching it like any other normal child. As I have less stress from him, its becoming obvious how much I am out of whack, back to the ben and holly analogy of the sun and stars, Ed being the sun of all stress and calming down, all the other ones are becoming visible. Living with 3 boys and a husband, it sometimes feels like I have 4 disable sons. Well, rock on tommy, I am ready to face whatever comes. To all those families still in the bunker battling daily life, take heart. Face your problems full on with faith in your ability to win and you will.

Now, I promise to post next week one about fats just in time for christmas. So, when your pouring your double cream over your clotted cream, and smothering everything in yummy butter, you can feel like your feeding your family a wholesome diet - instead of clogging their arteries! That's just a hint of what to expect. X

Friday, 22 November 2013

labels

This Wednesday I went to the monthly Space meeting, it's a self help group for careers/parents/anyone interested, of disabled persons. I have to confess that I don't really like going there, they come from a different place to me, although I am not dissing them, the service they provide it's great if that's what you want. Now that sounds terrible - what I mean is, they listen and understand, and then give you hints to deal with whatever situation your in, so that's great, it's also where it ends. But where I differ, is the why? and what to do about that. They are all coping with their situations and God I admire them for that because you see, I can't spend my life just coping, and that's what has sent me on the mission to find out the why? you see, when you know that, sort that out, then your situation is changed - does that make sense? Anyhow, they have a great resource of books, so I turn up and borrow them.

So, I had borrowed a book just before the summer, and needed to return it, and on the day I turned up, they were doing a show and tell, where anyone confident enough told their story. By the end of it, I felt so sorry for these women ( where are the men?) just as I had at the early bird session I attended at the beginning when Ed was newly diagnosed. None of their children were in special schools, and all their woes were from lack of understanding from school - and lack of their understanding that schools just aren't geared for their children. Their children weren't half as mad as Ed, they didn't have half the problems I have, yet, I felt sorry for them. Ed is 'bad' enough to warrant a place at a special school where he gets all the understanding and support the state can provide, their children slipped through the cracks, and ended up at schools where they are causing havoc in the classroom and then bringing that home - but are just about coping with the academic burden. So, this Wednesday, this lady plain out asks for help. Her son has just moved up to secondary school, sounds like a nightmare, has put two children in hospital, she and her daughter are scared of him, he barley sleeps and is in a constant state of agitation, yet all the professionals have nothing to offer - except pharmaceutical products. And she isn't willing to give them to him!! So here is her dilemma, there is obviously something wrong with her boy, but until she knows what it is, she has nowhere to start to help him, and she has no idea where to turn for help because she has no idea what it is that needs help, a vicious cycle if ever there was one.

When Ed was two and a half, he started pre-school at the same sweet place I had sent Tom. He was a nightmare to leave, the staff had to peel him off me. He rarely settled, I remember turning up an hour early. I was going to have a walk, but when I drove into the playground, he was stood by the door, just looking out for when I arrived. There was also a time, he got the key and let himself out, thankfully, another mum found him and brought him back inside! He played with the toys in an inappropriate way, was unengaged with the staff and children, was completely non-verbal (except for no and mum) and it was obvious that all was not well in his garden. It wasn't till he was just gone four that we had a diagnosis, though looking back it was as plain as the nose on my face. It wasn't till I said to the paediatrician "Do you think that he could be autistic" that she replied 'Well if it looks like it and smells like it, then it probably is" and that was that, diagnosed and rubber stamped and all the services that he had needed from the get go were in play. Now sure, that word brought me to my knees, or rather the 'its genetic, he'll be like that for the rest of his life did,' and I spent the following months weeping on the sofa - but! It gave me answers. When he melted down at the playground I could say to the disapproving faces 'Sorry, he is autistic' and those faces changed to understanding. I could do the same in the supermarket and so on. The label also, when I was ready to stare it full in the face, gave me a place to start. Any weird behaviour he had like toe walking, went into google 'autism and toe walking' and so on, till I reached that place where I finally feel like I KNOW what happened, what is happening to him and what I can DO to reverse it - which is what I have done. And while he is still as mad as a box of frogs, he is a million miles away from the poor little thing he was. And every now and then, I am getting little glimpse. You know this week, we haven't had an angry front door slam, the telly slam, he hasn't hit anyone, and last night - please God don't jinx this - he slept right the way through and woke up in his bed - happy.

There seems to be this 'thing' that labels are bad, but you know sometimes, labels are good. As long as the label isn't written in permanent marker pen, they can be really helpful for all of us. x

Tuesday, 19 November 2013

2 rashes and an allergic reaction

A week ago on Friday, Richard came in with his usual bags of Friday rubbish (that we all look forward to) and whilst scoffing away on all the yummy things he bought (none of which can be classed as food) I noticed Ed had developed a nasty red rash round his mouth and cheek. It was still raised red and hot when he went to bed, so in the morning I managed to book a slot with Ann the NAET lady. In the morning the rash had gone down thankfully, and in Anns office I listed all the rubbish he had been eating prior. 'Sounds like MSG allergy' so she tested him and sure enough, he showed a week muscle response in contact with her MSG sample. That day was a 'lets not wear any clothes day' for Ed, so he lay there being treated in his pants and vest. As soon as the MSG sample came in contact with him, his entire body burst out in goose bumps, it was an obvious reaction. He lay there and was treated like a little angle, and sang all the way back home.

The following Friday, none of the crap he ate caused him any bother at all. On Saturday, after Saturday club, in him came. Went straight to the fridge and climbed up the inside shelves to get at the cheese and chowed down on great lumps of cheese and cranberry and kefir water. Well, blow me down if the very same rash didn't appear. Thankfully, Ann had a half hour that was un-booked, so off we went for another treatment. This time, I had an idea of what it was and took samples of the three suspects. It was obviously the cheese, weak muscle response to my cheese sample and strong for the cranberry and kefir. Ann thought it was probably the cultures and moulds they use to make cheese, I said 'But you already treated him for moulds!' but apparently there are loads of them and cheese has a separate list of them. So he lay there and was treated like a little angle again, this time in clothes so no idea if he went all goosey, and happy all the way home.

Well the past week has been reasonable, nothing out of our ordinary. On Sunday, I got the day off to spend it with my niece on her 21st. To add to the days delight, I got to drive down to Wiltshire with my lovely sister, and my Mum and Dad were there too, what could be better. We had a great day together, and I was so glad to get the time off to spend it with my loved ones without the constant distraction of my ginger ninja. However, when I got home (and here dear reader Ed should have been in bed - albeit bouncing) all the lights were blazing. In I go and find a very cross Richard complaining about the products I buy. To cut a long story short, my husband (bless him) takes no notice at all with the interventions I have with Ed. He has no clue what we do, because in his down time, he shuts the door and its him, a Carlsberg and catch up TV or Rome Total War. Instead of Epsom Salts and lavender oil, he poured in about half a bottle of imperial leather citrus burst shower gel, and Ed looked like his body was covered in bubble wrap he was so bumpy. Thankfully, he was in a good mood, and apart from trying to remove his skin, was fine. I had some cream for nettle rashes and stings, so I rubbed that all over him and eventually gone midnight the little fella managed to fall asleep - sorry to all his teacher for that Monday morning! Well, the following day when I clean out the bath, there are still bubbles in the bottom of the bath, and where there was water remaining in his toys, bubbles! No wonder he had such a reaction - so, no prizes for guessing where we are going this weekend!

Here my point is you need to be on alert all the time. You need to know what they are eating and drinking and rubbing up against, and you need to be alert to any change in their mental or physical state. As the list grows of things that he has been treated for, it is getting easier to see the things he reacts to, so at the moment it looks like he is more allergic than he was before. However, before we started this process, its a bit like daylight. During the day, the bright light of the sun blocks out everything else, but once it's night time, the light of the stars are visible - they have been there all the time. (Thank you Ben and Holly for that analogy) So now all the major players have been eliminated, all their little friends are visible playing havoc with my boy. I have them in my sights x



Friday, 15 November 2013

A dog for Edward

A few weeks ago, Richards Uncle came to stay for a night. With him he bought 'Clooney" - named so because he is so gorgeous - a working cocker spaniel. Well, you should have seen Ed. Imagine the most excited boy in the world x 1000 and you are about there. "dog! dog! dog!' Poor Clooney was pestered to within an inch of his life, and what a lovely dog, not once did he do anything other than get up and try and get away.

In the morning, Ed woke up in our bed instantly in a bad mood. He sat up, made his 'I am in a really bad mood' noise, was about to kick off when he stopped himself, 'dog!' says he, and down he goes in the best of moods. Here a little glimmer of light shone in his mothers life, because for over a year now, I have been on the waiting list to get on the waiting list for a dog from Dogs for the disabled. A wonderful charity that trains dogs for disabled children and children with autism. In two weeks time, I was almost at the top of the list, which meant a visit from them with a dog, to see how a much bang for their buck they could get placing a dog with us. Clooney showed us at least, there would be a lot of bang! Finally, after a full day of pestering, when Ed trod on his tail, the dog finally growled at him, and Ed kept a better distance.

So when the happy day came for the people from Dogs for the disabled to assess us, it was lovely again to see how Ed reacted. Well, I was told that it could take 6 weeks for them to make up their mind whether they thought one of their dogs would help us, but yesterday, after just a few of weeks, I got a letter saying we had been accepted onto the waiting list - Yeah!! So now, I am just waiting to be 'matched' to a dog, what an amazing difference it will make to our lives, I just can't wait. Through out the assessment, things happened and things were said that I kept apologising for, "Don't worry Mrs Oke, we have seen it all" "Don't worry Mrs Oke, we have heard it all" they were so nice. Finally it came to questions from me.
"We all dress up in fancy dress on Christmas day, as its your dog, would you mind if I dressed the dog up to?"- the pair of them looked at each other,
"We haven't heard that one before!" Oh, how I laughed, but the good news is, as the dog will already be used to wearing a jacket, I would be allowed to dress it up, but just for Christmas.

What will this dog mean for us? Well, as I said, it comes with a jacket. I hold it on the lead, and Ed holds onto a handle on the dogs jacket, so it feels like he is walking it, but in case he runs off (a behaviour know as bolting) there is a belt round his waist that clips to the dog. As the dog has been trained, it means it has the same right of way as a blind dog, so I would be able to take it anywhere, with Ed. This means, that if they find a dog they think matches us, our whole lives are about to make a quantum leap in possibilities. And, as its a rather large dog, (because it needs to put up with a bouncy autistic child), it means I will have no excuse but to walk it and walk off my big belly that has appeared along with my third son.

So all in all, things in our mad household are moving forward. Since I started Ed on the Iodine, he has started coming out with more words ( only at school ) and is slightly more calm. His business end has improved also with the introduction of the kefir water, and touch wood, we haven't touch cloth for a while. The other night as I was rubbing him with coconut oil after his bath, I really looked at him, and noticed fully how has he changed. A year ago, I started him on NAET, at that time he had alopecia (loosing his hair from stress) was pulling his hair out as well, I think from pain, was so skinny you could see his kidneys (not really but you know what I mean) scratched himself till he bled, had dry eczema skin, could s**t through the eye of needle and then would spread it, would bang his head against the floor, would scream and shout randomly, would hardly eat anything, and would bounce all night long if given the chance. Now, most of that has changed. He has thick, glossy hair, beautiful soft skin, has even grown a wee tummy to match his mum, the head banging which is most distressing has stopped, his bum whilst still a work in progress is so much better, and now by about 10-11pm he is all bounced out. He is still as mad as a hatter, but his physical condition gives me hope that as that improves, his brain will start to clear as well, which hopefully, with the new words he is coming out with at school, is already happening. As I have said in previous posts, it has been noted by his short break workers, that he is the only autistic child improving - the others just add more layers to their onion. So to all those warrior mums out there, who have swallowed the party line that they will be like that forever, take heart. It doesn't need to be that way, even if we can't recover them completely from the fog of autism, we can make improvements in their lives and our own x

Thursday, 7 November 2013

ABA

Sorry I haven't written for a while, been living my life! The good news is that the lady a mutual friend mentioned (its in an earlier post) who has a wee boy newly diagnosed -  got in touch, and from now on she will be know as 'my new friend'. So I have been quite busy with my new friend who I just think is amazing. She used to work in a special school, so she recognised the signs and managed to get her son diagnosed at two and a half. She instantly set about doing what she could, and put him on a GAPS diet,  and has also managed to bully her GP into action to do some tests on him so she knows where to target her attention. Its been about 4 months since his diagnosis and her interventions, and on re-meeting her Psychologist, this professional said that she was doubting her diagnosis the change in him was so great! I put this in just to illustrate how important early diagnosis and intervention is, as opposed to our NHS policy of "lets leave it as long as possible in case they grow out of it so we don't have to spend any money." This wee lad has - as most ASD children have - bowel problems. She described a particularly nasty pooh to me, saying her Dr's response was that this was normal for her son if thats what was normal for him. I mention this, because our ASD children seem to get the rough end of the stick. Things go for them that wouldn't otherwise go for anyone else. What comes out of the backside of most of our kids is not normal and points to part of their problem, but because this condition is so little understood, it seems like professionals like to sweep these things aside to concentrate on areas that they do know about ( though I doubt they know much at all). This brings me to my topic today of ABA, applied behavioural analysis.

My sister asked me to write my opinion on a programme the BBC ran this week. I had come across ABA in my search to help Ed, but to be honest, it was so labour intensive and didn't seem to answer the question why he was like he was, that I never took it up. But recently I heard a couple of things that made me feel better about this, the first was from our new head at Eds special school. I took him some literature that the charity Treating Autism had produced, and some of my own ideas! I got such a nice feeling from this man, he is really knowledgeable, forward thinking and kind. As we chatted, before I could mention ABA - he brought it up and dismissed it. His reason were basically the brutality of it. The other thing I heard about it was from a talk given by a man with ASD, who referred to it as torture, and the two things combined made me feel ok that my natural laziness hadn't pursued it further. But you know, none of that prepared me for the programme.

My first thoughts were, why are they rewarding them with such rubbish (sweets), and why are they feeding them such rubbish, a burger and fries isn't food! If these children have bad eating habits, why don't they do something useful and introduce them to the joys of real nutritious food, because these children are like the carrot tops you can put in a dish of water - they will only grow so much before they die. The fact that they have such problems with food point to part of the problem. Given a zinc supplement, the sensitivity in the mouth settles down to a point where they are happy to eat. It all brought me back to breaking Eds beige diet, and zinc was one of the things I gave him. Why didn't they  try addressing the why, before pushing forward with the ABA agenda.

I can feel a rant coming on, so do forgive my writing. There was a Swedish couple with their teenage son who they had treated with ABA. He appeared quite normal, you would never have thought that he was anything other than an atypical child. When shown the footage of him receiving his ABA training, with him in tears and the trainer just keeping on till he complied, the boy couldn't watch and asked for it to stop. He said he couldn't remember any of it, and his family and trainer used this to justify what they had done. They had the result they wanted and the boy couldn't remember any of it - but you know, I kind of think that he could, it was more the fact he decided to not remember it than it was forgotten. Watching the children on the end of ABA, the thought really went through my mind that for any other child this would be child abuse. Bullying of the worse kind. An adult in power, and with trust, bullying a younger powerless person. All with the best intent, although you would have to be a special kind of person to do it - I couldn't. And that brings me to another point, the type of person that this therapy attracts to practice it, is there any test they go through to make sure that they aren't sadists because I would think that if you were that way inclined, this would be a top job for you.

There is ample medical evidence to show that ASD children undergo a ton of stress at a cellular level, and that this is part of the vicious cycle that needs breaking in order to re balance their damaged biology. ABA just looks like something that piles on the stress. Head banging is a common feature with ASD children, there again is plenty of evidence that head banging comes from actual pain, seizures are common in ASD, but because a lot of them do it - the 'professional' see it as normal. For any other group of people it would be investigated as a symptom and treated, however for our children its ignored and seen by ABA as unpleasant for us to look at, and so one of the things it seeks to stop like the stims that our ASD children have. These stims are funny physical things they do, like jumping on the spot, hand flapping, spinning - weird odd behaviours that make them look really strange. ABA completely misses the point that our children don't do anything for without a reason. This are self calming measures our children have discovered for themselves to make themselves feel better. There seems to be lot of information out there backing the idea that some people with ASD have no idea of themselves in space, that their senses are out of whack. The hand flapping or what ever movement they make gives them an indication of where their body actually is, so stopping it doesn't make sense. ABA just seemed to mask behaviour, I see behaviour as a clue to what is going on. ABA demands that children look at the 'therapist' - research indicates that some ASD children senses are so overloaded that they can't look and hear at the same time - hence they don't look at you in order to hear you, or they look at you and read your lips because they can't hear you if you get my drift. My heart just bled for the parent and the children. The parents are doing the best they can, they just want their children to be normal and happy - no one who hasn't lived with an ASD child has the right to judge them, and those of us that do know they are just doing the best they can. I watched this program and thought that it typified our western approach to health. Completely ignoring the fact that underlying ASD is the fact that western medicine and industry has poisoned our children, that their little bodies need nourishing with nutrients and love. Not the love that wants something out of the deal, but unconditional accepting love. That they need to be rid of whats causing their systems to malfunction, and rid of the stress of trying to be something they can't be (something which is relevant to all of us.)

You know I have been treating Ed with pro-biotics and iodine, well the other week I put back in earth. Yes, medical clay, I give him about a teaspoon a day hidden in his cranberry juice. Yesterday, he came in so happy from school, he went straight to his pepper pig computer and played with it without stripping off his school uniform for at least an hour. I gave him some organic grapes (organic because grapes are one of the dirty dozen, and grapes because of the reversatol in the skins) which he ate - first time in a long time! He sang, he laughed, he played with hoover - what ever makes him happy, he ate his dinner, we went for a drive, he wanted a bowl of porridge which he had before his bath and up he went happy. This morning he woke happy, ate a bit of ham for breakfast, and whilst we were waiting for his taxi he was playing with his pepper pig ABC thing. It took me a bit to notice, but pepper kept saying 'look for the letter C as in candy cat' at that point the child is supposed to push the button with the C on it ( and the picture of candy cat) and Ed kept getting it right! Pepper would ask for another letter and Ed would get it right again - even if the thing was upside down. I know its not splitting the atom, but its a sign that Ed is in there, fully functioning and fully present. Its our job to help tear down the biological barriers to him being fully himself, and not our job to make him what we want him to be. To sum up ABA I will quote from my new friend 'Its brutal - but it works.' As far as I am concerned, anything that's brutal and involves children isn't right, and anything that is brutal that involves vulnerable children is wrong. I think that in the future we will look back on ABA a bit like the electric shock treatment given out for depression, as something to be ashamed of, but like I said earlier, don't judge the parents who don't know any better. Judge our professional - who should. x