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Joe - Born 1998 Dx Regressive Autism - Improved+

Joe was born on 26th November 1998. Having had my daughter by caesarean section under general anaesthetic, I was determined to be a part of the birthing experience this time around and despite the background threat of a caesarian,  Joe's birth was a natural, gentle, loving experience.  He was bright red for the first week of his life, because he was early, the doctor said, but to me he was the most beautiful baby ever, our longed-for son.

 

Joe was a very placid baby, very happy and contented, I was so proud of him. People would stop me in the street and tell me how beautiful he was, I had to agree with them. My only concern was that Joe was always being sick, the health visitor, and the hospital, told me not to worry, it was reflux, and he would soon grow out of it. Little did I realise this was the first sign of a milk intolerance which would not be diagnosed until some years later.  Despite the reflux, Joe continued to thrive and was a big bouncing boy.

 

 

Joe Aged 8 months - a happy chap!

 

So much so that when he was 10 months old the health visitor told me it would be ok to wean him from breast milk straight to cows milk during the day, which I duly did.   Although I didn?t make the connection at the time, this coincided with Joe suffering a series of ear infections, for which he received antibiotics, and Joe was generally unwell for several months, quite lethargic, with intermittent diarrhoea, losing all his baby fat until he became almost skin and bone. Doctors had no answers and simply told me not to worry, I was being over-anxious, he would soon put the weight back on, it was just one of those things.  And so it seemed, Joe did put the weight back on, although the diarrhoea reappeared from time to time,  and despite a little hesitation, I was quite easily persuaded, as with his other vaccines, to give him the MMR at 13 months. I should add that when Joe was around 8 months old, and still being breast fed, one of my fillings broke, and I had it replaced with a shiny new amalgam.  I had no idea then of the damage this would cause.

 

 

 

 

Joe's 1st birthday

 

 

As Joe grew, nothing much changed.  He was still making steady progress, though I was concerned he was not saying as much as other children his age. The health visitor dismissed my fears, saying he was fine, and I was happy to believe her.  However, concerns nagged away, and I kept asking. Joe had two short hospital stays, once, he suddenly stopped putting pressure on his right foot, reverting to crawling from walking at 15 months. Doctors could find no explanation but mentioned that having had the MMR may be relevant, rubella occasionally caused arthritis in children.  This condition proved to be temporary, and we went on as before.  Then, a month later, Joe had what we later learned to be campolybacter, food poisoning, resulting in another overnight stay in hospital.

 

Returning home from a holiday with her Dad when Joe was aged 18 months, my daughter remarked that Joe had changed, he no longer seemed to know her. My in-laws said the same. I took no notice.

 

Then Sam was born, and Joe became a big brother. Initially he seemed quite interested in his little brother, repeating 'brother' when I talked to him about Sam, but this did not last.  Joe still didn't say much, although at 2 1/4 his peers were now stringing words together. I again voiced my concerns to the health visitor.  She watched Joe pick up a video case, name every  children?s character  on it and then put the video in the machine to watch, standing as close to the screen as he possibly could.  'Oh no, he's fine' she said, and again, I believed her.  By now, watching television was Joe's favourite activity, he showed no interest in the books and toys he once loved, and would quite happily stand in front of the television all day, if he could.  With a new baby, there were days when I would oblige his wish, being thankful that Joe was allowing me time to take care of  his little brother.  Taking the two boys out was quite difficult for me in any event, as Joe was often fearful of new places, sitting down and refusing to move, or clinging to my legs, it was much easier for us all to stay indoors.  I noticed I needed more help than other mums when we did venture out, and felt I was not coping well.

 

One day, my friend Sue called round.  She watched me pacify Sam, upset having just woken up, and saw Joe push over all our garden tables and chairs.  'Why is he doing that?' she said.  The question hadn't occurred to me before.  It was the first time I realised that maybe Joe did things other children didn't.

 

At the baby clinic with Sam and Joe for a routine check up, the health visitor looked at Joe and asked if he was saying any more. He was 2 years 8 months now.  She recommended an ENT specialist,  perhaps he was deaf.  The specialist gave Joe some activities to do - take a toy man out of the bus every time you hear a noise.  He had no idea what the doctor was talking about.  The specialist thought Joe was hearing fine, but suggested further tests. He asked us lots of questions - how is he with other children? Does he make eye contact?  Does he indulge in pretend play?  It was only on the car journey home I realised he suspected Joe had autism.  I looked on the internet for diagnostic information, wanting to find reasons why Joe was not autistic. 

 

 

 

Joe at 18 months - his favourite pasttime

was watching video's

 

I found lots of symptoms I could see in Joe.  I told my husband, he didn?t want to discuss it until we knew for sure.  I went to my GP.  'Well if he is autistic it is very mild' he said. I was not reassured.

 

Joe was diagnosed as being on the autistic spectrum aged 2 years 10 months.  The paediatrician said it was a lifelong condition, we could try various interventions but nothing really worked. He did give us one ray of hope though, he said it was quite difficult to be accurate in diagnosing a young child, and time would tell whether the diagnosis was correct.  In other words, the best we could hope for was that the doctor had got it wrong.  We were devastated.  We mourned what we perceived to be the loss of our son.  Joe's autism was all I could think about, from the moment I woke to the moment I went to sleep. It took over our lives. 

 

 

 

Sam with Joe aged 3, the diagnosis has

been made - Autism

Again, I looked to the internet for help.  Despite the doctor's dismissive response, I looked at changing Joe?s diet, at homeopathy and at early intervention programmes. I asked around and spoke to parents who had implemented early intervention programmes for their children. 

 

I knew I wanted to do everything I could to help Joe, I wanted to do my best for my son.

 

I enlisted the help of a Manchester based doctor, listed as a DAN Dr, who prescribed various mineral and homeopathic supplements.

 

This Doctor told me not to put Joe on a gluten and casein free diet, giving his homeopathic remedies the chance to heal Joe?s leaky gut.  I listened to his advice, a decision I have long since regretted.

 

In January 2002, Simon and I found ourselves in a hotel in Enfield, attending the son-rise start up programme.  We didn't know what to expect, were we going to be brain-washed?  We had the most wonderful experience. We realised we were not alone in wanting to help our son and we now had the tools and the power to proceed.  We were sure son-rise was the right program for Joe, that he would whizz through and be ready to start school as a typical child at the age of  5, 18 months away.  We looked at the Intensive week long course you could book in the States, so much money and anyway we wouldn't need it!  Joe would whizz through, we knew what to do.  I left my job, we converted our garage into a playroom, and our son-rise program began in earnest on April 1st 2002.  Our start was not without hitches. Two weeks before we were due to start our program, I had a telephone call from the LEA.  Joe had been offered a place on an early intervention project run by a UK University. It was run by the top ABA experts in Europe and was worth £100,000. Only two children in the county were eligible, and they had picked Joe.  No thanks, we are doing the son-rise program I said. You must be mad, was the response.  I hesitated. I spoke to the expert running the program. I asked for copy paperwork about the program.  Potential workers were advised not to refer to the child the were working with as crazy, or a brat, when discussing him with his parents.  Repetitive behaviours were stopped, by force if necessary.  I knew this was not the program for Joe.

 

 

We recruited volunteers, Mum and Dad in particular, and ran our program for 6 hours a day, 7 days a week.  We had regular visits from a son-rise child facilitator, whose help and enthusiasm was invaluable in those early days.  We joined and joined and for a while we felt Joe made progress with eye contact and interaction.  After a while this tailed off and we started to panic. Had we made the right choice? Were we doing something wrong? We didn?t know and all the facilitator could tell us was to talk to the son-rise teachers.  Then in September 2002, we heard son-rise teacher was coming to England to work with families in the UK.  We booked him right away and decided we'd better start fund-raising.  The three days Sean spent with us in November 2002 changed our lives. Sean saw the mistakes we were making in Joe?s program immediately and guided us back in the right direction. He advised a gluten and casein free diet, in place of the homeopathic treatments we had been administering without any obvious benefit.  

 

 

Removing casein from Joe?s diet, the day after his 4th birthday, yielded almost immediate results.  Within a week, Joe began to sing again, something he hadn?t done for several months.  Inspired, we removed gluten from his diet on boxing day, and since then, I have made many further modifications to Joe?s diet. Subsequent son-rise outreaches have been just as useful, and, thus inspired, we took the plunge and booked to come to the Option Institute for an Intensive.  We worried so much about flying with Joe but he was absolutely wonderful, and we had a great week. Having been used to seeing the UK son rise teacher the week was not too stressful and we were able to relax and enjoy our time together.  During our week, Joe was able to increase his attention span for an interactive activity to 20 minutes, from a previous average of 3 minutes.  He also started to draw.  Our second visit 18 months later proved just as useful.

 

We took Joe to a cranial osteopathy clinic, on the suggestion of another son-rise mum, the start of a regular visiting pattern that continued for three years. I still don?t know whether or not it helped.

 

The health visitor, who had dismissed my regular concerns so readily, came to see me. She was retiring and felt she needed to apologise to me for not having listened. She wanted to leave with a clear conscience.  I don't know how much of a difference it would have made to Joe had we started his program and other interventions during that lost year, I never will know, but one thing I would like to do when Joe's journey is finished is to educate health visitors on early signs of autism and how to respond.

 

We tried AIT, administered by Aly, a wonderful, inspiring lady who had lots of good ideas for Joe.  Also reflexology, administered by Elizabeth, so helpful, and supportive., and many nutritional supplements, suggested by Diana. But still we were looking for that one thing, that big thing that would make all the difference for Joe. 

 

I changed his diet,to the Specific Carbohydrate Diet, and yes, some small gains, he seemed clearer, somehow.  Then Houston enzymes, and hooray, proper poo in the toilet at last!  All great gains, but still there was more to be done. We are currently trying a low oxalates diet.

 

 

Joe during Auditory Integration Therapy (AIT)

 

Back to homeopathy, with a local homeopath, Jenny,  this time. She was convinced Joe?s problems stemmed from his childhood vaccinations. The homeopathic MMR remedy we gave caused Joe to lose his cradle cap, at last, at the age of 6.

 

Back to the US, for two more son-rise courses for me, I talked to Stuart, whose son is of similar age to Joe.  We talked about chelation, something I had always viewed as scary and extreme. I now know this needn?t be the case.  After much thinking, I booked to see Dr Heard at the Breakspear. I joined internet groups and researched as much as I could.  Joe has now been having MB12 shots for around 5 weeks. He talks more, his eye contact is almost typical and he wants to be with us all the time.  Whenever anyone visits, Joe sits with us in the lounge, looking at us, and our guests, reaching out to us, smiling, just enjoying our company.  Before, he would escape to his bedroom as soon as the front door opened.  Could Methyl B12 be 'the big thing' for Joe?  I am so hopeful - he already looks different, more alive, his eyes have regained their spark.   Next step chelation with TD-DMSA.

 

A newspaper article prompted a visit to Julie, a McTimoney Chiropractor. I watched in amazement as she asked Joe to sit this way and that, lie face up, face down and he followed her instructions to the letter, squealing and laughing in delight as she applied the deep pressure squeezes he so enjoyed. After work on his fingers he wrote his name by himself for the first time. He no longer walks on his toes, he holds his head high and is generally calmer and more focussed. Our visits continue.

 

Our son-rise programme is still going strong, some 3 ½ years later, and my belief in it and in Joe is stronger than ever. We have met some wonderful people along our journey and our lives are enriched as a result.

 

Karen

Proud mum of Joe
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