Tuesday, 29 April 2014

Party time autistic style!

Last year I heard a talk by an non-verbal autistic man. He introduced himself as being non verbal by nature, but he had been told that what he had to say was of interest, and so was happy to share. I am so glad he did, one of the things he said was a typical greeting between 2 autistic people would be to totally ignore each other. That meant that they were each totally comfortable with the other being there. They felt no need for small talk, or any of our social routines. If they weren't comfortable that's when the bad behaviour would come in.

So because of various Edward related issues, we were a bit late to the party. I am so glad we went, because out of the 15 invites, Harry only had 2 friends turn up. They had 3 replies and 1 no show. I am sure this was more of an issue for his parents, because Harry happily played completely independent of his 2 friends, and his friends did the same. They must have only just put the sand out because it still had the moist quality it has straight out of the bag, and Harry was quick to scatter it all over the garden. Edward found the trampoline, and the other boy (how awful - I have forgotten his name!) never left the side of his parents. Harry had a little sister who had a friend over, and she was just as sweet as can be. The parents all spent the afternoon apologising for their children, and the children just did what ever they wanted in their own orbit, other than the sister and friend who played fairy princess. I was so proud that Ed sat and ate some tea while the others ignored it. Over tea and cake we discussed their eating habits, and they were both on the beige diet. I didn't get all alternative on them, because I am beginning to see how unusual I am that I think I can change it. Anyway, Ed ate his tea and then disappeared upstairs and found the hoover. Harry kept taking me by the arm to show me that he wanted me to sweep up all the scattered sand, which I did, and he immediately scattered it again, and then I had to sweep more up and it went on like that till Ed found me walking funny. I knew immediately he needed the toilet which had a lock up high so Harry couldn't flood the bathroom - again, otherwise he would have gone by himself. When we got in I found that Ed had done a pooh in his pants, so thank God for clay because at least it wasn't a runny smelly mess. And so that was our party, 3 apologetic parents, 3 unconnected boys, 2 fairy princesses and 1 pair of pooh pants wrapped up in my handbag. And you know what, I had a great time. Sometimes it helps to see the cards other parents have been dealt, and its always nice to get out and do something normal with him.

But you know the 12 invites that hadn't replied have been eating at me. I just can't figure it out, why would you not even reply? The other family at the party lived in the same village that Ed goes to for his holiday play scheme, and I can tell you those ladies have saved my life many a time. They were unaware that there was even a scheme that would take their boys, and it reminded me of the meeting that I went to where I was the only parent who turned up, 1 parent, 3 professionals. It was there I found out about the play-scheme to include disabled children. As I told them about it they all made up excuses why not to send their children, that they were to difficult etc. And I can't figure it out. And then in the news recently there was that tragic family where the mother has been charged with 3 counts of murder on her disabled children. And I think what it is is that we are drowning not waving. That families with disabled children are so stressed, that the least bit of movement out of their comfort and routine is so stressful that they can't cope. And so their homes become their world, and everything shrinks down to just getting through the day. That I can understand because I was there not so long ago. When your ship sinks you have the choice to sink or swim. The woman who killed her children sank, the families behind closed doors are swimming, and I couldn't face either so I made it to a life-raft. With Gods blessing we will make it to the Island.

So how did I do it? I made the decision to make a change, and I am not alone. Last week I went to a treating autism coffee morning. I thought that it would be full of helpful advice, but most of the ladies were still battling with their children's condition. I had come across a couple of supplements that looked interesting, and this one lady had tried them all and none had worked. It hadn't put her off keep trying. I drove home quite down, can I really do this? And then it occurred to me that while her child may not be a-typical now because of her interventions, she is probably better than she was. Ed is still quite bonkers, but the madness has gone, the self harm has gone, and in his good moments he is a happy, funny little boy, and that is something he was not before. Small steps, small changes in the end will add up to big changes. In the meantime, my heart goes out to that poor mother who saw no other way out other than to end her childrens' lives. Because, truly, until you have walked in her footsteps you can't judge, and for all my brave talk, I would perhaps have done the same thing put in the same situation. XXX

Wednesday, 16 April 2014

Edward makes a friend

One of the hardest things about being a parent of an ASD child is that they are so isolated. With an a-typical child, you normally get invites to birthday parties, play dates, invitations to tea, you know the sort of thing. With an ASD child what you get is nothing. A few years ago, at a meeting for parents with a disabled child, I turned up and was the only parent to 4 professionals all there to help and inform. At this particular meeting, one of the ladies there was from the council, and the point I made above is the one I made to her. Eds whole world was school and home, nothing else, except the odd visit to family. From that, I was put in touch with an after school play scheme, that the lady from the council had just commissioned, that included children with special needs, (thats where he is at the moment). I also shook the tree and Action for children fell out, so Ed has a group he goes to every other Saturday morning, and a one to one respite carer comes every other Sunday to take him out for four hours. So I have done my best to try and broaden his social horizons. But I still wanted more for him.

Just before they broke up for the easter holidays, in his book bag I got this note. It says:


This is an invitation for our son Harrisons 8th birthday party. This year we decided to invite his classmates and friends from school to our house to enjoy party games, dancing, something to eat and hopefully if nice weather to play in the garden.

Due to his ASD he doesn't get to enjoy many play dates with school friends and the fact that the school generally has the children dropped off its difficult to know them and you the parent of his friends. As such your are invited to stay on the day to facilitate a fun time and to ensure your child is comfortable in their surroundings.

We hope you can join us."

You know sometimes you just get wrapped up in yourself and your immediate surroundings, and it kind of made me shed a wee tear that here was another woman going through exactly what I am, and to see it outside of yourself it really brings home how sad ASD can be. Of course I immediately called her, and on the day, we are both going to sit down with our diaries and bash out some play dates together (fingers crossed they get on) so that is a nice little social gathering on the horizon, and it made me really happy.

And then the other Sunday, something else happened that REALLY, REALLY made me happy and cry at the same time. Lauren who takes out Ed on a Sunday had just come back with him from Odds farm. Its a play-farm that I bought two annual tickets for. Apparently he had be playing in the sandpit with out his shoes and socks, and just got up and ran off. Lauren quickly got his shoes and socks and as she turned to run after him, found him hugging a mans legs. The man asked Lauren nicely if Ed had any issues, and she said he was ASD. By this time the mans son had come up to see what weirdo was hanging on his Dad. The man told his son that Ed was like xxx's son. "Oh," says the boy, holding out his hand, "Come on Edward" and they both ran off and played hand in hand. The family must have been meeting friends because more children came on the scene, Lauren heard the boy say "He's like xxx's boy.'' "Oh,'' Say the other children, and just like that they all understood and adapted for my wee weird boy. Both Lauren and I stood crying in my kitchen for the big step that Ed had taken and for the kindness of strangers.

Buoyed by this leap forward, I took him to the park during a play session the local church was running. Edward helped lots of children down the slide and then followed up by two knees in the kidneys as he came down while the other children were still on the slide, and them got stuck up a play-frame that I had to fireman lift him off. I came home feeling like 100!

But at least there are big steps forward happening, and if it happens once it can happen again. At the moment he is a lot more calm, and the ladies from the play scheme have all commented on how much better he has been emotionally and socially.

I had thought that I had cut back on his intervention treatments, but actually I have him on quite a bit. He gets about 5 grammes of benzonite edible clay which has settled his tummy, He has a B12 + 10 other B vitamins patch, he has 2 grammes of VitaminC, a multi-mineral, iodine, Kefir Water, magnesium oil rub and coconut oil rub after school, we are still doing our NAET, and last but not least we have a session of reflexology every other sunday, which he absolutely loves.

Will let you know how the party goes. XXX

Wednesday, 2 April 2014

Horizons 'living with autism'

Well I can only apologise for not posting earlier. Over 3 months and not a peep from me, and I had promised to talk about good fats bad fats before Christmas! Well, I am sorry, but I hope you all had a great time over the holiday period.

Life here has continued, slowly things ease up. I have Ed at a place where I am happy that slow improvements are occurring and within myself have reached a place of understanding of this condition. You may have already guessed that its not the understanding that all the paid professionals have. I have just watched last nights horizon on living with autism, and feel the need to speak. Combined this with meeting another new mother of an autistic boy at her wits end about to put him on Ritalin, and talking with a couple of mums at the horizon sports club for disabled children in Wycombe, and a new post was forming.

So how and where do I start, because I am at total logger heads with the states version of things. But unlike the states version of things, my theory answers all the question they are still pondering and will never answer because their whole starting point is wrong. Its a pretty bold statement I know, coming from stay at home mum who got her degree in colouring in! (graphic design to those in the know.) But sometimes the cleverest people can be the most blinkered, or plain stupid.

Albert Einstein famously said "You can not solve a problem from the same mindset that created it." So when the opening statement on the horizon program contains the words, its a condition for life, you have to have the understanding these professional aren't looking for a 'cure',  the idea that it can be changed hasn't entered their heads, when they talk about genetics and brains being different, they are already set in a mindset that the cutting edge of science has already disproved. Epigenetics has proven that according to your mindset or environmental factors you can switch on and off your genetic makeup. Outside of the autism context of this blog I hope that anyone reading this has a little WOW! go off in them, because it means that you can be whatever you choose to be, you are not fettered by your genetic material, which also means on a side note that everything you hear about, obesity, diabetes, cancer etc is wrong. This mindset is a bit like a little islander, no idea of anything off the island, and not even imagining that there is anything else out there. I thought the program was excellent in trying to portray the difficulties our autistic communities have but they only scratched the surface because it followed the very narrow special interest of the professor involved. Not a soul talked about any sensory issues, or the co-morbid physical issues to mention just two. Its like me thinking the whole world is my little town of Amersham.

There are two main points that I would like to give a different slant to. On the brain scans, the autistic children had very low brain oxygen levels. Hyperbaric oxygen treatment is one of the bio-medical intervention that has a level of success in my alternative world. Oxygen is a funny thing that is overlooked all the time. If you know anyone with cancer for instance I can tell you their bodies are deficient in oxygen. A nobel peace prize was handed out for the discovery years ago that when cells can no longer find enough oxygen to survive they turn to sugar and start fermenting it, this is when a cell turns cancerous. (So why isn't there a cure for cancer yet?) This is why exercise is so good for you, when you exercise your body make new blood pathways in your body to increase your oxygen levels, and oxygen is death to unhelpful viruses, bacteria and fungi. In our modern world of sitting on our bums inside, our oxygen levels are pretty low, we don't even breath properly using only our top half of our lungs. This leaves our bodies uncleansed to a large part of the co2 that we exhale including any toxic gases given off by our modern interiors which are almost hermetically sealed with double glazing and insulation. A quick google search on breathing techniques will show you all sorts of breathing exercises that can help with a whole range of conditions that would amaze you. Why autistic children have this is, is probably due to a genetic disposition triggered by an environmental cause.

The second point I would raise is the different levels of autism amongst the sexes, with boys making up 4:1 in the autistic community. And this comes back in my mind to the fact that autism is a neurological disorder brought about by a toxic body environment. I don't know this for a fact, this is just my logical conclusion, but I believe it comes down to girls being genetically better predisposed to detox than boys, because in latter life they will have the double burden of detoxing the waste from not only their own bodies, but of their unborn children.

We have various detox pathways in our bodies, breathing is one of them. Yesterday the news was full of the Mediterranean diet, and how we should eat not 5, but 7 pieces of fruit and veg to stay healthy. Its almost like they have no memory of history. Our diet just pre-second world war and post second world war, which was almost devoid of fresh fruits and veg, and full of bread and dripping produced a very healthy generation, which totally contradicts the health advice today. So perhaps the mediterranean diet is something else altogether, and heres my thoughts, perhaps its because its nice and warm and sunny, and people spend more time in the fresh air and sunshine, oxygenating their bodies and making lots of lovely Vitamin D (a vitamin whose role in the body has really not been acknowledged).

Another is the sulpha pathway which is why the allium family is so good for you, they are very high in sulphur (again - in the mediterranean diet). Iodine is the master detoxer, which is perhaps why the people of Japan are noted for their good health, they eat lots of seaweed. They also eat lots of fermented foods which produce lots of lovely bacteria. Did you know that bacteria or lovely, or are you one of the millions in the western world waging war on them with your anti-bac this and that? Well, bacteria cell in your body outnumber your body cells 3:1, they actually produce all sorts of necessary things for you, just off the top of my head Vitamin K and Vitamin B12. Vitamin B12 if injected in non-verbal autistic children gets them talking, its vital for healthy brain function, all the B Vitamins are. If you have followed the advice of the health service today, you will be deficient in this vital vitamin. Brain Fog is one of its least side affects. At worst you get pernicious anaemia or to top that you could be diagnosed with MS! And actually its a B12 deficiency masked by fortified cereals using the cheap synthetic variety of Cobalamin. When they do blood test this show up and they think you aren't deficient because its masking the fact that actually you are deficient in methylcobalamin, which is the only form your body can actually use. You find it in whole free-range eggs, outdoor reared cows full fat milk and butter, etc so you can see if your trying to be healthy according to the government guidelines your deficient in it, especially if your vegetarian. Anyway, that all for another day and another post because I am going off piste here!

There are other pathways that our bodies use to detox, and all of them work on building blocks scarce in our modern eating habits, combine that with modern faming practices that our leaving our foods almost devoid of nutritional content, throw in the mind boggling fact that according to a study reported in the lancet in 2006, there are '85,000 different chemical which have been released into our environment (by that I mean food, clothing, paint, plastics etc) which we have little or no idea of their impact on our health.' and you have a recipe for disaster. This explains all the weird differences, the imbalance between the sexes, the sheer variety of different ways autism presents itself, why some children have a 'descent' into autism and why and how, those children with parents pig headed enough not to believe the genetic lie, can reclaim their children and lose their diagnosis. It also explains the explosion our modern day health issues. It also explains why your more likely to have an autistic child the older you are, because you have as an adult a much higher toxic burden to stew your baby in.

So anyway, I was talking to these mums as I said yesterday. One of them had a child with a very rare form of cerebral palsy, her mum said it was a genetic condition. I didn't tell her, but actually its because she didn't have enough folic acid (one of the B vitamins) during the early part of her pregnancy when her babies nerves were first forming. The second has a boy with autism who also has heart complications, he was born with bits missing from his heart and had needed surgery when he was a tiny wee boy. Now I am sure that the medical profession puts it down to genetics, but what if his mother was deficient in Iodine? If you remember my Iodine article there is proof that an iodine defeceint mother is more likely to have and autistic child, couple that with iodine playing a major role in apoptosis (programmed cell death) which occurs in the developing foetus more than at any other time of life, and you can see how perhaps his bodies blue print got a bit messed up.

So where does my Eds problems come from? Well, I was an ancient 42 when I conceived him, I had had some major mercury filling fiddled about with, I suffered from migraines and on my dear Drs advice carried on taking paracetamol during my pregnancy, I got as big as a whale and stayed indoors because I couldn't walk properly (which meant I didn't get any sunshine or fresh air), and we had re-done our house a few years ago with all new paint and carpet giving off god knows what gases etc. Add that to the fact that on my husbands side I think we have poor genetic detoxing, and that I had been following the healthy diet with lots of vegetable oils (which are toxic) and no animal fat and I think thats the recipes that made my Ed. The good news is, that once you know how you got somewhere, you can retrace your steps. So I am trying to detox my boy at the moment whilst introducing a dose of transdermal B12+ 10 other B Vits into him. I forgot to say, that B12, as its a product of bacteria in your gut, doesn't do very well through the digestive system, so pills wont cut it. Really you need to have it sublingual (under your tongue) transdermal ( through your skin) or via injections.

So in homage to the title of this post, I would love it if they ran a sister program, 'living without autism' where they aired those families who didn't settle and took on this disorder and won! But that would bring down the house of cards built on the 'genetic life time condition' lie. Whilst I accept that perhaps I might not be ever able to fully recover my boy, because who really knows what the future hold for us, I have already vastly improved the quality of his life and will strive to continue doing it till he is either better or I am dead!

Again Mum, I apologise for the mental red pen anyone has had reading this correcting my spelling and grammar, and the lack of facts figures and dates backing up what I said, but I really don't have time to do anymore or even read this through to see if it makes sense because tonight I am having a life with some friends coming over - and at the moment they have nothing to eat! So, I hope this all makes sense and you find my mad musing interesting. XXX