HAMILTON’S RECOVERY JOURNEY
- 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
- February 2018
- October 2017
- September 2017
- June 2017
- May 2017
- April 2017
- March 2017
- February 2017
- January 2017
- December 2016
- May 2016
- April 2016
- March 2016
- October 2015
- June 2015
- November 2014
- September 2014
- June 2014
- January 2014
- June 2013
- March 2013
- March 2012
- January 2012
- November 2011
- October 2011
- September 2011
- June 2011
- May 2011
- March 2011
- September 2010
I found out I was pregnant with Hamilton the same day I found out that my daughter Winnie (18 months old at the time) had cancer. Needless to say, my pregnancy was a very stressful and emotional one. The doctors told me Winnie had only 20 percent chance of being alive in 5 years’ time and we began a very intense chemotherapy and radiotherapy program which ran the entire course of the pregnancy. To cut a very long story short, Winnie’s treatment was successful and she is now a very happy, healthy 12-year-old who no longer has cancer.
My beautiful baby boy Hamilton was born on the last day of Winnies’ cancer protocol. His birth was fairly straight forward. However, because I was too exhausted to push towards the end, the doctor decided to use a ventouse for the delivery, and his head was very flat and mis-shaped at the back because of this.
For the first few months Hamilton was a very low maintenance baby as he slept pretty much all the time and was no trouble at all. He was developing normally, and my only concern was his very flat and odd shaped head. This worried me a lot. However, the doctor assured me that it would not affect his brain development in any way, so I trusted him that it was just an aesthetic problem and that it would resolve itself naturally over time.
I realise this is controversial to say, but in terms of timing, Hamilton’s health issues and trouble began immediately after his Hepatitis B vaccination at around 6 months. Hamilton got very sick and began to do the most horrendous explosive diaorrhea and at night he would wake up in pain and scream for hours. I knew he had problems with his ears too, as he would hold them as if they were hurting him. I took him to a doctor who prescribed antibiotics, as he said Hamilton had glue ear. Despite 5 rounds of antibiotics and a medicine called Medised, which the doctor prescribed for the pain, he was not getting any better. At the time, I was clueless about the damaging effects of antibiotics and medicines on his gut. Eventually the doctor suggested ear grommets, and this seemed to work, as he was much happier. His gut, however, was getting worse, and friends would jokingly say his farts were the smelliest they had ever smelt in their lives, so something was clearly not right.
Despite all these health issues, Hamilton was still developing normally by hitting his milestones and starting to babble and say a few words. He was happy and sociable, and I have videos of him playing with his sister and toys in a typical way at a year old.
Shortly after his 1st birthday the doctors told me he was due his MMR vaccine. I had heard a few things about the link between MMR and autism and even had a lengthy conversation in a taxi the day before his shots. The driver warned me not to do it, as his daughter had for her son and he had regressed into Autism and was never the same again. This worried me hugely, and I even said the words “the worst thing that could happen after everything we have been through with Winnie would be for our sociable and happy boy to regress into Autism”.
However, despite my concerns the doctors were putting pressure on me and assuring me that there was no link and that it was all nonsense, so I took him along to his MMR appointment and tried to bury any concerns that I had on the subject.
About a week later Hamilton started to regress quite rapidly. He lost all eye contact and interest in people and my dad, who he had previously adored and always been happy to see, became invisible to him. Instead of interacting with people he would spend hours with his nose pressed up against the TV on his tip toes and flapping his hands. He would also spin for literally hours on the dining room table. He also lost the few words he had, like mum, dad, and tiger.
He became very obsessive-compulsive and would sit and line up his toys for hours on end and was obsessed with repetitive rituals. His sleep was horrendous. He became totally wired and would not go to sleep until about 1am and then would wake between 3am and 5am and laugh hysterically at the wall or talk to the furniture. It was a very stressful and scary time, and I did not really know what was going on. I was clearly in denial, as Autism did not even enter my head, even though that was my concern in giving him the MMR.
His health deteriorated rapidly too. His gut problems got worse and worse, and he was so constipated he would often lie over the arm of the sofa trying to relieve the pain, screaming in agony. Sometimes he would not poo for a week. He developed a strange reaction to almost all foods. His face would swell up after food and his tongue would get stuck for hours. He would cry in agony until the swelling came down. He also started to have mini seizures and did strange movements with his eyes and arms.
The best way to describe Hamilton at this time was wired. He suddenly had so much excess energy to burn off and would make me and his sister go around our local park about 6 times a day and when we got home, he would have an angry meltdown if we did not run around the block several times before entering the house. He never seemed to get tired or want to sleep either, so it was exhausting.
He became very hyposensitive, lost all motor function and coordination, and required a lot of sensory, proprioceptive, and vestibular input.
One day I was in a pharmacy and saw a book on the shelf entitled Autism, so I picked it up and started to read the check list and it dawned on me that he ticked every box. I decided to take him to the doctor with my concerns. He looked at Hamilton and said he could not have Autism, as he was too good looking! I kid you not those were his exact words!
I eventually got frustrated with the NHS, and decided to take Hamilton to a private doctor, who diagnosed him straight away with Autism and global developmental delay. The words of the woman who assessed him were Hamilton is a very lovely sweet boy, but yes, he has Autism.
Now when Winnie was diagnosed with cancer, it was of course devastating, and I felt like my world was caving in, but at least a team of experts swooped in with a protocol of how to deal with the illness and you are offered support and direction to get through it.
When your child is diagnosed with Autism on the other hand, you are pretty much left to your own devices. The doctor just brushes you off with ‘oh yes gut issues are common with Autism you just have to live with it’ and so on.
One day, out of the blue, an old school friend I had not seen for 20 years sent me an email with a video of mother talking about her son and how she had recovered him from Autism. She spoke about Autism as potentially reversible and discussed organisations such as TACA and Generation Rescue. I immediately ordered her book and was very excited when I read about her son’s journey, as I recognised similar problems I had with my own son, such as the ear problems, leaky gut, and seizures. My immediate thought was excellent, now I know I can start to recover him, and that was the start of his recovery journey. I will always be very grateful to my friend for steering me in that direction.
I spent months awake until 3am every day researching interventions to help him and was very encouraged to find many videos of recovered kids. I was so excited and driven, as I felt that there was something I could proactively do to help Hamilton with his health issues. I began to google frantically for any avenues that might recover him. I read about GFCF diet, GAPS diet, Biomedical interventions and I ready PubMed papers and books by Harvard Dr Martha Herbert discussing Autism as an autoimmune issue rather than merely a genetic or brain issue. There was suddenly so many options presented in front of me, and I was not even sure where to start. However, I figured the diet might be a good place to begin, so I eliminated milk and the gains were immediate, so I knew I was onto something.
A SUMMARY OF THE KEY INTERVENTIONS I HAVE TRIED THAT HAVE HELPED HAMILTON
I began to read many books on the subject of nutrition and the role of a healthy immune system in sociable behaviour, as well as the brain gut connection and after seeing an immediate and dramatic improvement in sociability and cognitive function after removing all milk from his diet (gluten did not seem to have much effect) I then put him on a low carbohydrate diet for a period of time, in order to heal his gut.
I initially went to a professional practitioner for nutritional guidance and supplements before embarking on dietary and biomedical interventions. I felt it was important to focus on healing the gut before adding in too many supplements.
Gains: Improved bowel movement, fully formed stools, clearing of the fog, less spaced out and more with it, better attention span, less stimming and OCD, better focus, and increased sociability.
Next I began to read books and did online research on Biomedical interventions and attended several TA conferences, which I found very useful and informative. I also met some lovely parents who supported me along the way and will always be very grateful for that.
I did about a year of biomedical intervention under the supervision of two Medical Doctors before I eventually switched to homeopathy.
Hamilton is a very sensitive boy and became very hyperactive and did not sleep well on biomedical intervention, which is why they agreed with me that he would be better off pursuing a more natural and homeopathic approach, as he was already a big responder to homeopathy.
Gains: Hamilton responded well to probiotics, DMG, vitamin supplements and cod liver oils so I have kept him on these.
Homeopathy changed our family’s life for the better and alongside Craniosacral therapy and Reiki has produced the biggest wows so far. I discovered it when Hamilton started to get allergic reactions to all foods. Everything he put in his mouth made his cheeks swell up and his tongue would get stuck between his teeth and he would moan and cry until the swelling came down a few hours later.
Fed up with seeing him suffer (with no helpful suggestions from his GP) I did some research and found a remedy called Apis which is for bee stings and swelling. I popped one of the tiny white pills in his mouth and within minutes his swelling would calm down.
I repeated every time it happened and after a few months he was no longer intolerant and could eat any food. I was hooked from the moment I saw his swelling come down in seconds before my very eyes!
I started to read more about Homeopathy and came across some great books.
The first I read was Amy Lanksy’s ‘Impossible Cure’. ‘My healthy child with homeopathy’, ‘Homeopathic Psychology’ and ‘Autism beyond despair CEASE therapy’ were three books which were also very easy to read and helped me gain an understanding of how homeopathy works and how it could help Hamilton recover from his many health issues.
I then discovered Houston Centre of Homeopathy while reading the Autism File magazine and did a year of that approach. The way it works is you write a very detailed account of your child and list all the things that you feel negatively affected their health. In Hamilton’s case, these even included the radiotherapy and chemotherapy he was exposed to when I was pregnant. CEASE was not an easy process, but I worked closely with his homeopath, and the gains we saw encouraged us to continue.
After doing a year of CEASE therapy I decided to work with a Craniosacral Therapist, Homeopath, and Bio-Resonance Practitioner, who is a wonderful specialist with true compassion and an unrelenting dedication to recovering my son. She managed to clear Hamilton’s high metals (arsenic, lead, mercury, and lead) which testing had shown as high.
We also cleared all 10 chemotherapy meds and radiotherapy that he was around when in my tummy and to my amazement, at 3 years old when we did the clear, his wee stunk of chemotherapy, which showed me that he had been exposed and affected by these toxins when in the womb. I saw lots of gains after clearing those.
Gains: Without a doubt the gains from homeopathy have been incredible. They cured his allergies to foods and he can now eat whatever food he wants with no reaction, his bowel is better, he sleeps 10-12 hours a night with no interruptions EVER.
One day I read in the paper about a talk that was taking place in London by Raun Kaufman who had severe autism as a child, but was recovered fully by his parents and who was now running an autism recovery program. I went along to the talk and found him so charismatic and funny and I knew that was the therapy that I needed to follow to help Hamilton out of his own little world.
I decided to do the 3 week courses, which taught me a lot more then how to help Hamilton. It helped me on my own personal growth journey and changed me in so many ways that it is hard to put into words. One of the biggest things I learnt was that it is important to understand that all the stimming and other odd behaviours that our kids do are coping mechanisms for sensory overload or pain, and therefore it is important not to stop them, but to join them. Joining helps our kids to feel accepted and loved and helps them to trust the people around them and want to interact with them.
I worked with two amazing outreach therapists and then with some volunteers who were all incredible with him and helped him in too many ways to describe in a short summary. Overall I did 5 years of Son Rise with him.
Gains: The biggest gain I had from doing the program was learning how to play and interact with my son and to accept the strange behaviours and work with them instead of against them.
By joining Hamilton in his own world by either lining up pens or spinning in circles for hours and staying present whist doing so he was able to step out of his world of obsessions and OCD and see how much fun it was to interact and be sociable with people.
Other gains: Attention span, focus, sociability, speech, happiness!
Another wonderful intervention was going to California to a Centre called Innovative therapy 4 Kids run by a wonderful Neurologist who runs a team of therapists (speech, OT, PT, ABA) who all work together to help your child to develop in all areas.
Hamilton did an intensive 3-week program which ran from 9am to 2pm every day in which he would do a listening program called LIFT where he would listen to alternating Mozart and Chant music on headphones, whilst going from therapist to therapist to do various movement therapies and speech therapy.
Gains: Within minutes of meeting the Neurologist and her team Hamilton, who was pretty much non-verbal, started to say words, such as necklace and Madagascar and even said his first sentence! They also taught him how to eat with a fork and spoon within a couple of days which made me and my mum cry as his fine motor skills were so restricted after his regression that he could hardly use his hands.
They taught him so much in those 3 weeks and we continued the program back in the UK with one of their therapists who came over one summer to do stage 2 of the program. Finances allowing, I want to go back next Summer for another top up, as it helped him so much.
I was hooked from my first session of Craniosacral therapy and saw so many gains that I later went on to study it myself for 2 years, so that I could treat him myself at home.
At the time of his first visit, Hamilton was lost in his own world. He had been such a sociable, happy boy, but after his regression, he became very severely autistic to the point where he would not make eye contact with anyone and would spend hours engaging in self-stimulating or repetitive OCD behaviour such as lining up his toys or switching lights on and off. When friends or family would visit, he could either be found standing on his tip toes flapping with his nose pressed against the TV screen or spinning for hours on the dining room table. It was heart breaking to see our happy boy now lost in a world of his own and in obvious pain from his chronic constipation and many allergies.
The picture above shows Hamilton at his worst: Vacant stare and no desire to be cuddled or kissed
The Craniosacral therapist, who is now a very dear friend of mine, asked me to lie down first on the massage table myself as she wanted to demonstrate what a session felt like. So, I lay down and she put her hands on my shoulders to tune into my Craniosacral system. As soon as she did, I felt a huge wave of emotion come over me as I released all the stress and tension I had been carrying throughout my pregnancy due to my Win’s cancer treatment. And as I began to sob like a baby, my Hamilton got up off the floor where he had been quietly lining up toy cars in the corner of the therapy room, climbed on the bed lying on top of me in a foetal position and re-enacted his birth!
I was completely overwhelmed, and a bit frightened to be honest, as I had never experienced anything like it. My therapist reassured me it was normal, and that she sometimes witnessed children re-enacting their birth and that I should just go with it.
So, I did—for the next 3 hours Hamilton alternated between so many emotions from laughing to anger then sobbing, however he did not want any comfort from me. The therapist told me it was just a process he needed to go through, so I decided to have faith.
I began weekly then monthly sessions for myself and Hamilton, and eventually decided to study it myself as the physical and emotional benefits for the whole family have been incredible.
As I mentioned above, doctors had used a ventouse during delivery. Hamilton’s head was terribly swollen, bruised and flat at the back. Two weeks after his first Craniosacral therapy session, however, his head started to round and his eye contact and sociability returned, so I am convinced that the ventouse was partly to blame for Hamilton’s sensory processing issues. Having now studied Craniosacral therapy myself, I understand more about the anatomy and biology of the body and how any restriction of the Vagus nerve through birth trauma can result in inflammatory, immune, and digestive issues.
It is my personal opinion that whilst most children can withstand the assaults of modern life relatively unscathed, some children with a weakened immune system or genetic predisposition can and do have neurological reactions to viruses, vaccines, food allergies, environmental chemicals, and other immune triggers. Some studies show this imbalance in immune function can begin in the womb, often influenced by their mother’s health. This might explain why some children are born with autism, as opposed to those who regress later in life when their immune system is triggered and their body’s bucket overflows with toxins that it can’t cope or get rid of. When their toxin bucket overflows, you get a host of symptoms we call autism.
It is impossible to list all the interventions I have done for Hamilton as there have been so many but I have shared the ones that have produced the biggest gains over the years.
Hamilton is not fully recovered yet, as he still has an ATEC score of 29 mainly because of his speech delay, which I think is due to comorbid issues such as dyspraxia and motor function damage, however, he continues to make steady improvements every day in cognition and sociability, and he is generally so much healthier and happier.
I am so grateful for the many improvements from his years of Craniosacral therapy sessions. Alongside therapies such as Son Rise, CEASE, and constitutional remedies he no longer has allergies and can eat any food. Taking him out to restaurants is now a pleasurable experience, as he is always well behaved, sociable, and happy at the table and can eat what he likes. I can take him to the cinema and he recently sat through 2 hours of Star Wars. I was a very proud mum that day!
What I am most grateful for from all the interventions he has done, is he is now a happy healthy boy, who is sociable and loves people and going out. I can take him anywhere without him having a massive melt down or wanting to run off.
He no longer freaks out from sensory overload at the funfair, and I can take him on holiday without having to worry about taking lots of supplements with me or worrying about finding a gluten free restaurant. Every one of my friends, family and teachers have said they cannot believe how far he has come and how sociable, healthy, and happy he is today compared to when he regressed. Overall family life is just so much easier and less stressful and I have great hope for the future.
Alessandra (Hamilton and Winnie’s Mum)