Joel, Max, Holly and JakeI can't tell you how immensely proud I am of our little boy Joely this week
We have had a very good weekend and have done weekend things that a parent may do with their children and don’t think twice about it; riding in the morning, a good trip to the theatre on Saturday including sitting quietly for tea and cake in the interval, and to church on Sunday. All activities which may get a little noisy and frantic especially in church if faced with small children; but nothing in the league of doing these things with a child with autism believe me.
When faced with a child with autism to do these things you would usually come out of them in one of these states :-
a) leaving very early because your child can't cope with this level of noise/sensory input ie if a baby screams Joel would bash his head on knees and start crying and shouting. Not a good look in a quiet church.
b) having heart palpitations, incredibly stressed, upset and on the verge of tears if not already in tears and
c) thinking this is never going to get better, especially when it’s re-iterated with sympathetic people around saying ‘it must be very hard’. Yes it’s incredibly hard but somehow when you hear that it’s even harder.
A year ago I ticked all of these boxes with Joel on a bad day. On a good day I ticked one of them but a box was always ticked. This weekend I didn't tick one box. A mini miracle to me in the world of autism where nothing is taken for granted.
The theatre trip was amazing. It was to see Seussical the musical and Joel initially sat there with his hands in his ears and requested the 'toilet' in the first act (we ignored him as this is his way of getting out of things). But within minutes he was laughing at the show and very excited to be there. I had to take this all in: my family were sitting in a row enjoying a show! A year ago we were in the same theatre watching Annie and Joel lasted five minutes (to the delight of his father who really was not looking forward to sitting through this so I can’t really blame him there). But the point is he could not have sat for very long without getting very upset and agitated and we usually had to jump ship. It’s a bit like being on a constant journey with a child with autism as you can’t sit still for long as usually you’re on the move. This weekend we were on a mini break in the autism world. Is this what it’s like living in a ‘normal’ family?
In the theatre interval Joel had his toilet break and then sat beautifully to have some tea. At church he sat very well and smiled throughout though did need some rice cakes to keep him quiet and some books and a Thomas train. Jake took him for a country walk to end the weekend and came back saying they were singing in the car and how great it is that Joel’s so happy. In Jake’s cynical way he said it’ll probably all come crashing down and I understood this as sometimes you move forwards and then it somehow goes backwards again in autism I can’t describe it but you can’t get complacent as when we’re on good runs it usually does come crashing down. This has made us both slightly jaded. But a bit like doctors and nurses our humour has become more cynical and dark and somehow you have to see the funny side of things when you’re in the thick of it.
This little boy with autism is like he is today because of what therapy he receives (ABA therapy at his school) and what intervention we are doing with him bio medically to help heal his gut.
We are still on the biomedical path with Joely age nine since the age of about three. Some parents decide to do this when they're on a mission to help recover their children from autism and some don’t think it works and some haven’t tried it. But we’ve seen differences in Joel since helping to heal his leaky gut and certainly he’s a lot happier.
Lots of children with autism are damaged on the inside which affects their brains but it's not really talked about as it’s a controversial subject with vaccinations mentioned. But there are parents who can see the damage being done to their children quite literally in front of their eyes.
I saw the lights go out out after a standard chicken pox vaccination. It was weird; I saw it so clearly and I thought how could this happen that my son who was developing ok and saying some words and actually getting somewhere just being turned off very suddenly. He was quiet in the car on the way back from the GP and I kept saying Joel are you ok Joel? Joel what's up? There was blankness in his eyes as he was staring into space and I had lost him. I swear I had and you can tell me different but I am his mother and I saw it I wanted to ignore it I had too much on with new-born Holly it couldn't possibly be could it? He'd had the MMR jab quite late (age two) as I was pressured into getting it as the nurse said there was a measles outbreak in Sydney (I later discovered there wasn't). But he had survived that ok. So he was doing ok. I was seeing some progress but as the paediatrician told me later some kids just can get pushed over the edge if they have too many jabs especially if they have bad guts and have had lots of antibiotics as a baby and ear infections these kids are more vulnerable. I didn't know any of this. Well we're not told this as first time mothers are we? This is why some in the autism world are trying to petition for tests being carried out to all children before vaccinations so that the more vulnerable ones don’t get vaccinated and pushed into autism. I’m not saying this was what caused all of Joel’s autism and he always had issues but I’m saying it pushed him over the edge. Slowly we’re getting him back.
To get him back it amounts to giving him lots of supplements including vitamins and aloe vera to heal the gut lining as these are usually damaged and the gluten/dairy free diet can help some children. In fact Joel came out of the fog when I took away gluten and dairy his pre-school teachers asked me what I'd done as he stopped falling all over the place and seemed to wake up.
It sounds bizarre but gluten and dairy can be like taking drugs for some kids with autism and it actually releases opiates in the brain which can make them appear spaced out and as if they are on something. I read somewhere it's like them being on opium. I have never experienced this but from looking at Joel it sure didn't want me to ever take any. Joel was always bumping into things and lying down as if he was on acid so when we took away these things he was addicted to - he would only eat wheat and dairy based foods.
The first time I exchanged a bottle of dairy milk with rice milk he was so furious with me he hurled it across the room and my heart broke it was like he was having withdrawal symptoms. It was so hard and I was living in paradise near the beach in Sydney yet suddenly with a two year old who was so far off the Richter scale I had to do something. I also had newborn Holly in the mix who would be bundled along with Joel and me going a million miles an hour to get to ABA sessions across Sydney and other places. Chiropractors, kenesiologists, homoeopaths you name it Joel was first in the queue usually kicking and screaming. Holly had a few of these treatments too which did her some good and she had no vaccinations when I realised the effect it had on Joel. She has benefitted from taking fish oils since a baby and she’s a very bright vivacious girl but this was really meant for Joel’s eye contact as it’s recommended for kids with autism. His eye contact is great these days.
Some children are loaded with heavy metals notably mercury and this can be chelated by giving these capsules which bind to the mercury which allows the body to get rid of it. It's been a while since we wanted to do this as we had to get Joel's gut right and we have waited a few years for the nutritionist to give the go ahead for this but we have done three rounds of chelation which for us involves a three day course every eight hours giving him a capsule in juice to drink. He’s amazing and does it as I think he’s used to drinking the supplements we give him so just gets on with it and I think he knows they are to help him.
So far so good and I have noticed he’s doing a few more things and is more alert. It can take over a year to see anything as the mercury doesn’t get out of the body for a year or I was told but it contains sulphur which I was told is good for them so the benefits can be seen sooner.
We’re on a long road and have just started it with this chelation business. Funnily enough my sister recently handed me an article from the daily mail about parents who had ‘cured’ their son of autism (don’t judge the paper at least they are writing about this unwritten subject) :-
http://www.dailymail.co.uk/health/article-2271608/Can-really-cure-child-autism-With-parental-devotion-pioneering-treatment-Jamies-behaviour-transformed-So-experts-sceptical.html
Their son had ABA (intensive programme of 40 hours a week at age 3) and also given capsules of a drug called dimercaptosuccinic acid. This is what lots of parents are doing with their children who have had tests which show they have really high levels of mercury in them which Joel had too. Some theories link autism to mercury poisoning in the environment and vaccinations. So we’re at the beginning of chelation and have a long way to go. It’s tiring but it’s worth it I think. If we don’t try it we will never know. And already I’ve seen the lights come back on.
