Feature story: Meryl & Toby Hayes

“I hadn’t realised how deficient our relationship had been” says Meryl, mother of 14 year old Toby who, for the first time, held a ‘real’ conversation with her following the start of a new treatment programme. “It was wonderful. You don’t notice these things day to day, but when Toby and I conversed, and I mean properly talked for over an hour and a half, it was magical and something I found that I had unknowingly been craving for a long time.”

A simple conversation with their child is something that most parents take for granted, however Toby has always been a very special child, requiring a huge amount of support and attention to enable him to achieve his full potential. Although there is still a long way to go, each day Toby and his family are finding new ways of treating and maintaining the improvements in his condition so he can lead a ‘normal’ life.

From the day he was born in a peaceful birthing pool in London, it took nine years to begin to get a full understanding and ‘label’ on the various challenges Toby experienced. As is the way with such conditions, each one is not brought on in isolation: dyslexia, dyspraxia, asthma, eczema and many ADHD and autism behaviours are often diagnosed in clusters.

“I am convinced that Toby’s problems started on the day he was born,” continued Meryl. “Although he had a drug-free birth in a calm birthing pool, I had a very long second stage labour and when Toby was born, although breathing, he was considered to be very floppy. He was quickly taken to a resuscitation table where he was given air.  When he was given back to me he was gurgling, which the midwife didn’t think was right, so he was taken to ICU where he was diagnosed with a burst left lung (pneumothorax) and given a cocktail of antibiotics and painkillers, as well as fitted with a tube through his belly-button to check the oxygenation from his aorta. He also had a drain from his lung to support his breathing efforts until he recovered. After four days in ICU he returned to the ward but had developed jaundice and had a sun lamp trained on him night and day.”

Thankfully, little Toby made a speedy recovery and was home within a week to start life with his new family; and there seemed no more immediate cause for concern. He suffered with eczema on his face and body from two weeks old until he was around four, but he carried on growing and developing as any  baby would be expected to. It wasn’t until Toby hit 12 months old that Meryl started getting concerned about his development.

“He could sit up when I sat him up, but not get himself to a sitting position on his own. He was also very behind other children of his age in terms of language development and seemed to have no intention of crawling, let alone walking. Most of this was dismissed as being very common, but we had him tested for glue ear just in case, which was all clear.”

It was over two years before Toby walked on his own (he had always been a ‘bottom-shuffler’) and the family noticed that he exhibited some odd behaviours while at nursery, such as finding it difficult to switch between toys easily and share with other children, and it seemed that bright lights, touch and noise bothered him. It was also around this time that Toby experienced his first asthma attack and was taken to hospital.

At three years old, Toby started at pre-school but despite having been very well socialised as a younger child, was painfully shy around other children. His language started to solidify around this age too, but he was frustrated that he found it so difficult to verbalise his needs as eloquently as others. Again, concerns were raised, but no medical intervention was prescribed as no obvious problems were diagnosed.

“We lived in London which is very polluted, and with Toby’s asthma we wanted to give him a better quality of life so decided to move. We had been looking at France as a place to relocate to just before I became pregnant with Toby, so we picked up our plans again, and made the move. Toby was three and half when we went, so he was enrolled in a French maternelle (kindergarten) where he started to learn the language. He seemed to be getting on very well, but efforts to communicate were, so it seemed, heeded by the language barrier, putting Toby on a back foot against his peers.

“It wasn’t until he started at a primary school at six years old, that a teacher highlighted to Meryl that she thought he may need some psychological support. Although very eloquent, she had concluded that he was too divided between the UK and France. This was evident in his confusion over ‘home’, drawing two pictures of where home was.”

Toby had a home tutor each Wednesday who concluded that Toby might be dyslexic and require some additional support in certain areas. Although the school agreed to fund a home tutor for Toby, they did not support the idea of a teaching assistant in class to help Toby to learn better. So, after five years in France, the family moved to East Sussex to provide Toby with a better-suited education.

“From day one, Toby was visibly shocked by the noise and sheer number of people at state primaries that we visited. He was totally overwhelmed and so we took the decision to send him to a private school for the remainder of his ‘primary’ education.

“Due to the fact we had spent time in France and his language skills were not sufficiently advanced, the school placed him in the year below his age category to help him to catch up. It was the intention of the school to move him back up to his year group, however he remained a year lower and at the age of nine, was finally diagnosed with dyslexia and had access to a special dyslexia tutor to give him the support he needed. Due to the provision already available at the school for another child, he was treated as an Asperger’s child would be treated, which seemed to help him greatly. Although following tests in this area, his score was not sufficiently high to get a formal diagnosis of Asperger’s.”

A very sensitive boy who was still very shy and found it hard to make friends, Toby experienced some psychological bullying at his English school. Unable to sufficiently verbalise his frustrations or have the tools to retaliate, he would have ‘crises’ which would involve running away and panic attacks. Bullying formed a significant part of Toby’s early school life and only seemed to exacerbate his condition.

“As the school was originally created as a girls’ school, the provision for boys’ sport was limited to football; something that Toby hated. He had never been able to catch a ball due to poor coordination, however it was at the school that he was first diagnosed with dyspraxia and again, support was given and an alternative sport (swimming) was introduced, which Toby loved and excelled at!”

With the help of the school, Meryl arranged for a child psychologist to observe him in lessons and at play for half a day; she also tested Toby on a range of cognitive areas. He scored ‘poor’ or ‘low’ in almost all of them, apart from ‘perceptual reasoning’ where he scored in the high 90s. Literacy and comprehension was one of the lowest, scoring only 2-3%. He also tested poorly for social understanding, meaning he struggled to read non-verbal cues and subtleties in the voice. Word-finding, slow processing and social challenges formed part of the same condition. A diagnosis of ‘Autistic Spectrum Disorder’ seemed to fit him, although no such formal diagnosis has ever been given by the official bodies.

When nearing the end of his primary education, Toby wanted to attend the local mainstream community college, and was accepted on the condition that he missed Year 6 and returned to the appropriate year group for his age. “The college has a fantastic learning support department, one of the best in the country. Toby could attend all normal lessons, but a ‘gentler environment’ was created for children under the care of the department via their own playground, peg and locker space. They also had their own language therapist, although there was an 18 month waiting list to see her!

“After Toby had been diagnosed with dyslexia, I started buying him some over-the-counter fish oil supplements and gave him some multi-vitamins when he started at secondary school as he stopped school dinners. It wasn’t long before I noticed an improvement in his dyspraxia; he enjoyed successfully throwing and catching a ball whilst on holiday!”

In spring 2011, on her ongoing quest for more information to support Toby, Meryl was introduced to a woman in her village who set about a chain of events that would eventually see a turn in the tide for Toby’s development.

“She was telling me about the theory of ‘retained reflexes’ where children who suffer with many of the same symptoms as our children, never lost many of the reflexes that should fade after birth. So I started researching on the internet and came across Dr Robin Pauc and The Tinsley House Clinic. Having read his book, ‘Is that My Child?’ we decided to get Toby an appointment.

At first, the exercises that Dr Pauc gave Toby to do seemed really strange. They involved balancing on one leg and brushing teeth with your left hand and such like. The idea was to stimulate parts of his brain that were less developed. Later, there was a computer programme for him to use each night to correct the difficulty he had with eye convergence (very common in dyslexia); he also made a clear point that diet was one of the most important factors and that from now on Toby was to have a cooked breakfast each morning, reduced  sugars & carbohydrates and where these were eaten they should be whole wheat (brown) carbohydrates and potatoes should preferably be new potatoes, as these were more easily digested.

“Processed foods were to be avoided as much as possible, along with all bad E numbers; to help with this Dr Pauc recommended a fantastic little book, ‘What’s Really in Your Basket’ which lists all the E numbers, their names and effects. I try to always take this with me when food shopping; it’s alarming and invaluable.  He was to have limited use of his laptop (1/2 hour a day) and the Wii computer, (except for Wii fit and balance exercises which are helpful) and only one TV programme a day. Dr Pauc also recommended that I start Toby on Vegepa supplements as soon as possible, which we did in autumn 2011, when our old pills had run out.

“From the start of secondary school, Toby had been put in the lowest maths group, which we were always unhappy about as we felt his maths wasn’t bad, but his sensitivity and difficulty in reading the questions was holding him back and the lower group was a smaller class and had a teaching assistant.  We were so relieved and excited when after Christmas, in January 2011, Toby was so improved that he was moved to the middle maths group and is now near the top of that. It wasn’t just that his maths and English had improved, he seemed able to cope with the bigger class sizes, no longer needed a teaching assistant and was so much better with noise and touch.

“The turning point for me with the Vegepa supplements, was when Toby ran out of them and didn’t take them for a few weeks. His behaviour deteriorated rapidly, and he regressed into some old traits. He became moody and I found him constantly interrupting me when I was speaking to other people. My husband and I wondered whether he was going through puberty and that his behaviour was perfectly normal for a pubescent boy, until one day he had one of his crises, and just ran off. Later that evening he was crying to me and talking of suicide as he couldn’t understand what was happening to him.

“We quickly established that he hadn’t been taking his supplements for a few weeks; as soon as he was back on them, his behaviour improved noticeably. He talked of his body aching and having pains when not taking his Vegepa which he partly attributed to his behaviour deteriorating.”

Meryl concludes, “Parents are having to find all this information for themselves and most GPs and relevant government services are difficult to contact and hold very little up to date information. GPs are not routinely trained in nutrition in this country and those that are, can make diagnoses but not offer any useful treatment. Basically, it’s one big struggle and the clock is ticking as the child’s brain gradually loses its elasticity. I really think Toby is not able to get the nutrition he needs from his food and that is why the Vegepa is so crucial. I also think whilst he needs much more EPA than DHA, he also needs DHA supplemented. We have been trialling 3:1 EPA:DHA  and he has shown further improvements. He is also following the Lumosity brain training programme under the guidance of Dr Pauc.

“I think nutrition is key to the whole thing (further to reading ‘Gut and Psychology Syndrome’ by Dr Natasha Campbell-McBride) and I really think we are on the cusp of a big change.”

It is certainly onwards and upwards for Toby, with improvements in his development all the time. Recently he rode a bike for the first time and to celebrate, his grandpa is buying him his very first one so he can continue to practise. Friends are noticing a real change in Toby too, describing him as much more engaged and involved in play and conversation.

It has been a long road for Toby and Meryl and there is still some way to travel, but through the combined and cumulative effects of the broad range of research, treatments and supplements, Toby is on the way to finding a solution that really works for him and will continue to enable him to not only lead a ‘normal’ life, but develop the tools to converse and communicate – which, as Meryl found out perhaps a little later than most, makes life as a mum so very special.

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