First Fundraising event went off with a bang!

Head of Step by Step school Donna Fidler with me at the Fundraiser curry event for the school

Am so proud to announce that the fundraiser event I put on with a few other parents from the
Step by Step Parent's Association in East Grinstead near Joel's school on 17th March was in one parent's words 'beyond Step by Step's wildest dreams!. 

The 130 seats in the restaurant was full and the atmosphere was buzzing and people were being turned away!   I can't believe we did it and are now able to put this money towards a white board or other games/ipads which the school needs which is what I set out to do in a blog you may have read a few months ago after I'd been to the AGM meeting at the school.  It hit me that this school really does rely on charities for equipment and other things apart from running costs and staff fees.  So  thtat's really quite a lot of stuff they need.

Earlier on in the organisation to get this curry on the road I had Hyacinth Bouquet on the phone to me from the church I attend who was concerned my lunch was falling on her Lingfield lunch day, but I had to keep my date firm as we'd booked it with parents and actually it was my loss as she has a regular following. 

She called me the day after the lunch and was quick to give me her dates for the year for her other lunches as she'd heard my lunch went very well.  I was even quicker to point out that I had a child with severe autism and I didn't know if I'd be doing another lunch in a year let alone six months time!!!  I don't know if you realise it but it's a big thing to just sort out some paperwork on your desk if you have a child with autism and a few others let alone try and get into competition with other charity lunches in the area!  I didn't know if I'd get 20 people to this gig never mind the 130 lovely people who all turned up !

I am so thankful to all the local businesses and other businesses who sponsored this event and gave to the raffle prizes.  Also thank you to everyone who came along and those who just sent money to the school who couldn't come.    Thanks to Charlotte, Carmen and Claire some other mothers who helped to make this event run so smoothly and to Saleem at Nizam who has offered me a job in marketing!!

I hope that this will be an annual event for the Parent's Association and am happy to have helped this wonderful school and these amazing children who some of them sat so well at the event and this is all because of the school they go to.  Thank you Step by Step!!!xx

When the Lights Came Back On...

Joel, Max, Holly and Jake

I 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.

I 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 things that may get a little noisy and frantic in church if faced with small children but nothing in the league of having 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 if 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 mentioned 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. Now 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.

Seeing the lights Come Back On

Letter to Peter Huhne from Joel's father

Dear Peter,

In response to your comment that your father behaved like an autistic piece of s**t. I would like to say that while I have sympathy for your plight you should be reprimanded for the offensive and ignorant nature of this comment.

I am the father of a child with autism with knowledge of many other such children and for the record neither my son nor any child in his condition demonstrates the cold, lying and manipulative behaviour of Chris Huhne.

I appreciate that it is hard for you to come to terms with a father who has behaved in such a deplorable fashion and it may be easier to reconcile this by badging it with a condition but in doing so you have created a lazy and misleading stereotype.

People who suffer from autism and those that love them have a tough enough time without this kind of negative and entirely ignorant association being made.

Yours sincerely,

Mr Jake Gordon-Clark, father to Joel, 9years old and an autism sufferer.

Autism Book Review part 2 For the Love of Ann - Story of an autistic child

Adding to my earlier review on autism books here's another one which I said I'd read after Joel's swim instructor said it was pretty amazing how a very autistic girl grew out of her autism and seeing as there was an article recently about how some people with autism can grow out of autism it seems quite topical. BBC News - Children 'may grow out of autism'

The book that Joel's swimming instructor suggested I read is called for the Love of Ann - The True Story of an Autistic Child' about a girl called Ann who was born in the 50's and brought up in a time when autism was really not around.  The parents were told to put her in a home but they fought for her to have an education eventually and with the help of a very understanding head and with the work they did with Ann at home they succeeded in teaching Ann to talk and then to read and write. 

The parents and two brothers adored Ann and the love they gave her really does shine through the book.   This gives me hope as my husband and I think that love has a big role in Joel's development and people love Joel not just his family.  He has the effect on some that immediately get it and him and there are some who just don't get him.  For the ones that do get Joel I adore you.

The thing about this book which sets it apart from books written about children with autism today is the unpolitically correct style in which it is written.  The way these parents taught Ann to do things was by smacking her into submission if she did something she shouldn't be doing ie getting up all the time during meal times.  They didn't tell anyone what they were doing as they would be considered cruel but they kept on smacking her until she did what she was being taught ie holding a spoon at the table and using it.  When she finally understood this task she was rewarded with lots of cuddles.  The training was reward and punishment and it worked for this family but not sure this is recommended these days.  In fact people may be shocked at this method they used and I was a bit taken aback but I could understand how desperate they were.

You have to read the book to see how hard this family tried with Ann and not judge them for it as they weren't given a handbook about autism and there were no services out there to help and no ABA schools  for children with autism. Thank God we have the school and the knowledge of specialist tutors who have been trained in ABA methods which is very much based on re-enforcement and rewards for getting things right and ignoring bad behaviours.  So the techniques this family used was similar to techniques used with Joel apart from the smacking.  This book was written in a different era where disability was seen as shameful and where the parents were told either institutionalise her or drug her so they took it on themselves to help Ann and treat her at home and they came through it with a girl that clearly loved them back and could eventually tell them and laugh with them. 

Ann grew out of her autism and became a model and secretary but am not sure what happened to her.  The book was certainly inspirational as these parents got through the tough times and came out the other end so it was interesting to read how parents coped in the 60's living with autism - not very well and all behind closed doors as far as I can work out and I think these parents were an exception to the rule.  I'm grateful we live in a more accepting time but know that it's still difficult to understand even if you have all the books and guidance you can still get confused about what it's all about. 

It's the times when I see small gains and improvements with Joel that I have hope for him and his future.  When he said to me 'turn it on' and handed me the ipad the other day I was gob smacked and immediately turned it on and it made my day to hear him.  I can hear his voice these days even though it's very quiet and very low.  It's still a voice and as long as he has one I will do my utmost to let him be heard and be instantly responded to so that hopefully he might realise it can get him somewhere.

Joel's school Curry fundraiser Buffet

 

 

Am very excited to announce we are going to have our first Step by Step school Parent's association Fundraising event which involves eating lots of curry!

 

This is open to EVERYONE to come along to East Grinstead in West Sussex and support Step by Step School for children with autism and come and help raise money to go towards the two whiteboards needed which cost £2,500 amongst other things they needed for the school.  You may have read my post before that Step by Step rely heavily on charities for costs other than running costs of the school and staff salaries.  All the extra costs come from charities. 

 

So if you'd like tickets then do call or email me and will get them to you.  All  very welcome and the more the merrier.  Please help this first event go off with a bang! 

 

Currently looking for raffle prizes.  I don't mean that green looking liquor from fairs of old but talking about luxury spas/weekends away/hampers etc.  If you think you can help then I would love to hear from you!

 

Alice xx