Tom Born 1998 Dx Regressive Autism (HF) Age 3, Regressed Further Dx Severe Autism Age 5

If you're looking for a story that ends 'and then he said "Mummy I painted this picture for you, because I felt you'd like something I made for your birthday "' then this is not the Story of Hope for you. At least, not yet.  If you're looking for "He continues to surprise us with the amount and variety of words/phrases/songs and also the length of time he can maintain social interaction" from his special school home school diary then read on.

I was quite flattered when 9 people rushed into the delivery suite for Tom?s birth.  I thought it must be a quiet night at the Victoria Hospital or something. Tom was induced, 2 weeks late, after I'd developed a moreorless head to toe rash.  He was failed ventouse, then forceps and a total cone head.  However, his head seemingly pinged back into a normal shape by the next day and everyone breathed a sigh of relief, his first check pronounced him 'perfect'. 

It seems hard to remember but Tom was absolutely perfect for at least 2 and a half years. His red book is full of 'speech excellent', he had a best friend, no skin problems, no bowel problems, had a very wide vocabulary, could read (yes, really!!), had an incredible memory and was beginning to spell words on the side of the bath using sponge letters.  He had empathy with other people's feelings.  Parents of other children we knew were urging us to get him  into nursery early to hot house his obvious genius.  We enrolled him into nursery when he was 2 years and 5 months old.  He'd had all his jabs, no problems, no reactions. He ate well and a varied diet (perhaps an addiction to Shreddies but that didn't seem sinister at the time). 

Within 3 months it all fell apart.  I picked him up one day and casually said to the teacher "isn't it a bit strange that Tom's not playing with the other kids?"  "YES!" she said, "we're all really worried about it". Not worried enough to mention it to his parents however. We called our health visitor and she said she'd go in to see him. Her first visit she said 'no worries at all' but said she'd visit another day just to make sure. The second visit she was worried. We were rushed onto a diagnosis programme - we are some of few parents who really can't argue about the speed of diagnosis - he was diagnosed four months after our initial worry was aired. ASD - High Functioning.

What happened next is a nightmare. He lost more and more skills over a period of about 18 months.  From seeming totally normal he regressed and regressed and regressed until he could no longer feed himself and had no language at all.  He lost all interest in other people.  He had therapy from the age of 3 years 3 months, he was assessed again by a top centre for autism.  He did have access to good help but nothing made any difference.  His one to one teacher told us one day that she'd never known a child lose as many skills as Tom. And she's been working with autistic children for many years.

We started doing Son Rise with Tom which made him feel valued and loved.  It's child led - he was in no place to be challenged.  If it was scary for us it must have been terrifying for him.  We did a one week Intensive at Son Rise institute in Masachusetts which really boosted him and us, in fact it changed our whole attitude which was a life saver and then got him into a brilliant specialist school.  Where they freely admit, they found him an enigma. He loved his new school but other than some success at toilet training he seemed incapable of learning. Each new skill he picked up another dropped off the end. And I should stress that these people really know what they're doing. All the other kids were learning stuff - just not Tom.

In despair I typed late onset autism into Google and found a woman called Doreen in the US. She took the time (bless her) to explain what they were doing and how her kids had been transformed. I bought info from the US on Ebay that introduced me to Autism-Mercury. I remembered the hair testing kit I'd bought that summer and sent off Tom's hair sample.  I only did it to eliminate toxicity from our enquiries. I think in some ways at this point we'd kind of given up.

His test came back with alarmingly high levels of lead, antimony, arsenic, aluminium, tin.  We started on the biomedical road that day.  We supplemented Tom from February 05 to April 05, then added TD DMPS.  Tom is a long, long way from recovery but here is what has changed:

• Before it was like having a small demanding lodger in your house. There was little interaction and no affection.  Tom is more smily, more cuddly and just more 'present'. He initiates play now not just wanting food.
• Tom is now singing whole songs with lyrics. So his memory is coming back and his ability to form and express words
• Tom has used a few short phrases - Open the cupboard, Too hot, Don't want to go to school.  He tends to need to be stressed to talk but some language is coming out.  (Including some swearing, but we'll gloss over that!)
• Tom has finally grasped matching line drawings with pictures and objects.
• Tom is now much more aware of his disability. This is not a blessing but it does demonstrate more self-awareness.
• He can now copy a face you pull
• He is dumping toxins (according to his second hair and fecal tests) at a pretty incredible rate. It's as if the tin, antimony and lead are pouring out of him.
• Tom now actually watches videos and actually plays his drum machine. That sounds very little if you have a high functioning child but Tom had the concentration span of a gnat.  He can now be engaged in a task for minutes at a time rather than seconds. As I said, Tom has a long long way to go.
• His pica is almost cured. This child would eat non food items constantly, he craved them. 
• Comments in his home school diary include 'what good communication', 'very vocal', 'happy, on task, joining in', 'he took me by the hand so he could have a turn', 'for the first time ever we have been able to continue a song by taking turns, just like a conversation'.

We're finally now able to consider a more challenging therapy for him. He's 7 years old. It's as if we've all lost 4 years of our lives. But I really think we're on the right road and so does Tom?s school. Every day his home school diary is full of new things he's doing, so it's not just our wishful thinking.  It's also wonderful to have people working with Tom every day that are watching for any signs.

What's made the most difference?  I think zinc for Tom was the first key.  We were tempted to do just supplementation but now we know how much heavy metal he's dumping we're glad we chose chelation too.  I think supplementation helps straight away and chelation takes much longer to show positive effects.   SCD diet is also pretty vital - although it's a real nuisance to stick to. Whenever Tom sneaks sugary or glutenous food he literally flies up to the ceiling.  His system just can't handle it and he turns into a raging, laughing monster. Brainchild vits and mins are fantastic.  I should mention here that we have a younger son who was not developing normally until he started on Brainchild.  Then within 3 months he was reading, toilet trained, role playing - and able to shop on the internet. We're trying to reverse that last one!!  We've done a raft of tests on Tom and I don't think any of them have been a waste of money - they've all proved that he wasn't absorbing any good stuff from his diet just the rubbish.  We'd supplemented him with Eye Q for 18 months - none of it was being absorbed! Now we think his whole system is bucking up.  His blood tests now show normal mineral levels. 

What have we discovered?  Tom had thimerosal in his DTP jabs.  Our younger son had thimerosal in half his DTP jabs (the doctors switched brands).  Tom had MMR (but honestly we saw no reaction) our younger son did not have MMR.  We started supplementing Tom when he was six years 5 months.  We started supplementing our younger son when he was four years 5 months. If I could turn back the clock I would.  All we can do is keep plugging away - it will take at least two years for Tom. We?re now six months in. Check back in six months and we think he'll be further along the road.

What triggered it?  We know he was injected with mercury and suspect he should have been gf since birth.  But really we have no idea whatever. I remember going to get him from his room one morning and him walking straight past me instead of stopping to be picked up and kissed. Did he have a minor fit or something that night?  He had nothing but organic food and breast milk for the first year of his life.  Perhaps we were staving off autism without knowing it.  The last jab he ever had was December 00 - Meningitis.  In February he started sliding backwards.  But as far as I know there's no link between this jab and autism. Perhaps his toxic level just got too overloaded.  Watching the videos it's so clear - one month playful, interactive, cheeky. Two months later "Tom! Tom! Look at the camera, oh he's gone again.  Tom?"

Here is the weirdest thing - the song he sings most frequently is 'I do like to be beside the seaside'.  He didn't learn this at school or at home.  He learned it at his child minder's when he was less than 2 and a half years old and heard it recently on a party tape.  It's as if he's been captured in amber and is only now very slowly beginning to plan his escape.

Mum and Dad of Tom