- CALL TO ACTION: MENDIP HOUSE RESIDENTIAL CARE HOME ABUSE SCANDAL
- Treating Autism statement re Mendip House scandal, NAS-run care home for adults with severe autism
- Identifying health problems in autism 1 December, London. CPD educational event for parents and professionals.
- Autism Research Should Be Financed Like Venture Capital
- London Support Group Meeting 18 October
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Dougie was born a week early after an uneventful 8 hour labour. He was a healthy weight and all the signs were looking good until trying breastfeeding for the first time. He didn’t seem to know what to do, and of all the things I was worried about beforehand breastfeeding wasn’t one of them! After some hours of concern and a gloopy blocked breast was discovered he was given some formula as his blood sugar had dropped (with a type 1 diabetic father alarm bells rang). At home with a constantly crying baby and frantic breast-pumping ended with mastitis and Dougie’s first dose of antibiotics (“they only affect the one breast” said the GP). Colic was diagnosed even though he didn’t quite fit the picture.
At six weeks and now on formula the first signs of eczema appeared on his leg. We had very little sleep (1½ hours at the most), his legs were always moving in the Moses basket. Dougie finally started to sleep for up to 5 hours and then came the injections (DTP etc). After the second round he came out with a rash across his torso and the eczema really started to take hold. The sleep deteriorated along with his skin. He constantly rubbed together his wrists and ankles and the material on his rocker chair had to be replaced twice because he had rubbed a hole through it. Night-time was the worst with fitful sleep and the constant rubbing making his skin bleed. Despite his lack of sleep he was very bright, met all his milestones, hardly crawled, got up onto his feet by 12 months and he was away. And I mean away. I ran everywhere with him on reigns. Life was very tiring and lonely. I joined toddler groups where I couldn’t enter the room if anyone was already there, tried to go out for picnics but he would just take off and I would have to run after him. By this time he was covered in wet wrap bandages and emollients, when we eventually did make it out of the door it was time to turn around and come home again. On the up side he could count to twelve (the number of steps in the house) and he could not only recite the alphabet but name an object or three (a is for apple etc). If I gave him an instruction such as “get the ball from the chair” he would do it straight away. I hadn’t noticed that he didn’t say ‘mum’ and spoke in phrases i.e. “on the floor”. His first words were “granddad”, “upstairs”, and “breadstick”.
It was at this time that I kept hearing the word “Autism”. There was a documentary on the TV and I have a cousin who I now believe is Autistic.
Dougie was seeing a homeopath who was a retired GP. At home as he ran up and down the room tracking the dado rail (a daily occurrence) I decided that I wouldn’t give him his MMR, and the homeopath said she would support my decision. When he reached 18 months he came down with a really heavy cold/flu. His eyes were streaming, high temperature. Just a virus the doctor said (consequently I believe that this was sub-clinical measles). During the next few months he lost the language that he had (over 125 phrases and many more single words). I saw him staring at his alphabet blocks struggling to pronounce their sounds as if he had never spoken them before. He stopped responding to his name, and 6 months later ended up with 3 interchangeable words. He had two parties for his 2nd birthday; when the toddler group children arrived he completely ignored them, stepping over them in order to carry on watching his obligatory Teletubbies videos which I took everywhere to keep him calm. The other family party was when the penny finally dropped. He was having a nap (he always went to sleep easier in the day) when everyone arrived and woke in his usual sweat with the shakes which abated after the bottle of formula. He was obviously distressed as I carried him downstairs towards the sound of people talking. When we got to the bottom he wriggled free of me and went as far away as possible into another room and rocked from side to side babbling. He looked truly emotionally disturbed. These were all people he saw regularly but he refused to go near any of them.
He was due to go to nursery the following January and I could not imagine him surviving. However, he picked up some kind of bug during the kids party and ended up with diarrhoea and sickness. I gave him plain bio-yoghurt and ripe bananas and loads of yellow mush came out of him and he seemed a lot better after that. He started nursery and coped. The health worker came to do his 2 year check (2 months late) and asked if he could name some plastic animals. No he couldn’t. Not one. Every day we had walked to the village and named the cows in the field. Not anymore. He used to love the little pram book that he could name all the objects in. Not anymore. He didn’t even want to look at it. He didn’t stop to say the letters and numbers on the car registration plates or stop at the road names either. Not anymore. When the health visitor quizzed me by asking if I asked him to go and get his shoes from the kitchen would he, I replied “I don’t think he knows where the kitchen is let alone what his shoes are”. “He might be tired” she said calmly, “I’ll come back in 2 weeks”.
That word “Autism” came straight to the forefront of my mind. Thank God for the internet. In the year 2000 it was the best resource I could have wished for. All my questions were answered. Everything from food limiting to anxiety, new situations/places to loud noises, it was all there. We were devastated but relieved. Two weeks later I told the Health Visitor “I think he’s Autistic”. She stalled saying “well, he’s imitating” – Postman Pat was on a video (another valuable asset in my video armoury) “hello Pat” said Dougie. He was starting to repeat words from videos and retaught himself the alphabet and numbers over the next few weeks (to my great relief). Luckily we got an appointment at the Child Development Centre very quickly, but first they came to us when Dougie ran up and down the garden laughing manically whilst consuming his 3rd banana in a row (he doesn’t like bananas now). We were scheduled for a week’s observation but after the second day they said there was no need, the panel (doctor, psychologist etc) were all in full agreement and a diagnosis of moderate to severe autism was handed out.
Fortunately from the January to May we had avidly read every available piece of research, bought every book, started a GF/CF diet and even started to put in place an ABA programme. There was little bio-med info at the time. Just enzymes imported from the USA, probiotics and nystatin. We joined all the internet sites and followed with interest Billy Tommey in the Autism File. We were lucky, we quickly got results from taking out casein (skin started to clear, eye contact back), the gluten took longer and we were still left with wet wrap bandages as we negotiated our way through a multitude of other food intolerances. Dougie’s ABA programme produced stunning results where he gained 500 plus words within the first few months and he had started to draw, paint, read and write by his 3rd birthday. However, we still faced a intestional challenge not knowing how to fix his problems. During the ensuing years we have battled against yeast, clostridia, numerous gut bugs and parasites. We have tackled vitamin and mineral deficiencies, viruses and heavy metals. Under doctor and nuitritionist supervision we have tried many, many different therapies and approaches.
Here’s a list of some of the treatment approaches we have tried (nutritional and education) with a one to five star rating;
ABA/VB (incorporating the Reading and Writing Programme) *****
Probiotics (VSL being the best) ****
Sea Greens/NDF plus/Nano Detox*****
Fish Oil/Omega 3:6:9 *****
The Listening Programme **
Visualising & Verbalising *****
DAN (vitamin/mineral supplementation) ***
Yasko (SNP specific supplementation) *****
Diet (GF/CF/Low Oxalates/Food Intolerance avoidance/Rotation) *****
Cranial Osteopath ***
Craniosacral therapy *****
Triple treatment (parasites) *****
MB-12 vitamin ****
Transfer Factor *****
Dougie is now 13 years old. He has been in a mainstream school since he was 4 years old with 1:1 support. His early hyperlexia (fascination with letters and numbers) stood him in good stead until he reached year 4 when he started to struggle with abstract ideas and subsequently fell behind academically and suffered a loss of self-confidence and self-esteem. Mainstream school is a dream for many parents with Autistic children. For us we always felt it is a compromise. You hope that there will be gains that compensate for the lack of an individual education. However, we now feel the disadvantages are outweighing the advantages. We want more for him than a mainstream school are willing/able to offer. We have a short window in time left to make sure that he reaches his full potential so that he can go on to choose a career that will fulfill him. We are currently looking to take him out of mainstream education in order to home educate to help fill that gaps he still has. Bio-med still plays a big part in his recovery.
Our biggest gains have come through following the Yasko protocol. Dougie is a tall, handsome young man with a lovely, happy disposition. His diet is broadening making holidays/days out easier. If anyone is wondering if the past 11 years have been worth it… Most definitely! We will continue to look for therapies and treatment that suit Dougie and ourselves. He wants to be a test driver for Top Gear. Look out Stig – Dougie is coming!
By Dougie’s MumVisit this page for more Parents’ Stories of Hope
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