SIAN’S JOURNEY

Sian was diagnosed with spastic quadriplegia cerebral palsy when just a few months old. Her muscle tone was very high and she had constantly straight arms and clenched fists and was a very unhappy baby. It was impossible for her to lie down on the floor without assistance and her high muscle tone made it difficult to dress her.

Sian started at Advance shortly after her first birthday; as a result she has developed very good head control. She is now able to bend and raise her arms and open her hands where as before they were stiff and she had no control over them.

Her whole trunk control has developed considerably and she can turn her head and beginning to follow with her eyes.
When we started Linda explained that the key to human development lay in the development of the diaphragm (a muscle rarely shown in images of the body) which is a sort of precursor to the development of other muscle groups. 2 years down the road Sian is continuing to develop more control over her body, she weight bears on her legs and is beginning to anticipate walking.

She is also a much happier child, enjoying her time on the floor and now showing an increased range of sounds coupled with greater control of her tongue.
Her school was surprised to find that she eats real food (not pureed) also being surprised that she also drinks well from an ordinary cup.
Although there is a long journey still ahead of us Advance has moved us much further already than was ever offered by her paediatric team.
Advance offers Sian the opportunity of a much more independent and fulfilled life than she might otherwise have had.

By her Mother

Jake’s Story

Jake was diagnosed with CP practically at birth due to the distress he suffered. He was born not breathing and ventilated with very little chance of survival.
Jake survived and from then on we were on the usual round of hospital visits and physio’s and getting nowhere, we found out about Advance when Jake was six and started therapy. We noticed changes immediately.

The day after beginning therapy Jake actually slept through the night for the first time. Within two weeks we noticed his whole rib cage had changed. Prior to starting Advance we noticed Jake’s rib cage was looking more and more deformed, but within two weeks we could see it being to look more normal. His constipation improved. He stopped needing nappies during the day and he told us when he wanted the toilet. Jake continued to make progress in all areas.

The physio had said he would never propel a normal wheelchair so we were provided with a small one until one day we could see his hand, eye co-ordination and understanding were so good we were sure he could do it so we persuaded them to give it a go. Now he whizzes himself about independently now. They said he could never use an electric chair “guess what” yes! He uses one now and extremely well.
Jakes improved breathing has meant he’s much more vocal and he can even say a few words quite clearly. From being shy and withdrawn he has become a stronger character with a whacky sense of humour and an excellent memory.

Recently to my surprise he showed us he could do the exercises to himself and could remember old exercises. His teachers are all commenting on how well he’s doing at school. Which is very different and positive compared with life before Advance.

Now we look forward to Jake becoming more mobile and talkative and don’t put a limit on his potential.

Ben’s Story

By his parents

Ben has always been a mystery to the medical profession. Despite many, many tests and appointments with top specialists in different hospitals, no one has been able to diagnose the cause of his problems. Time and time again we were told that he was unique and unusual. We desperately wanted to know how we could give Ben the best chance in life, but without a diagnosis, no one was willing or able to tell us what the future held for him. He just didn’t fit.

Our initial assessment at Advance was a revelation. Linda was able to describe Ben’s physical characteristics and his abilities exactly, without even examining him. For us, to be told that Ben was the same as other children and that something could be done to help him was amazing.

Before using the Scotson Technique, Ben was a very introverted, often frightened little boy who took very little notice of his surroundings and who didn’t really interact with anybody. A boy with poor balance and posture who struggled to play with his toys. It was so sad to see that the whole world was passing him by. Physically and cognitively he was struggling to make any progress.

Within a few months of starting the Scotson Technique we noticed changes in Ben. We first noticed that his rib cage began to form correctly and his neck extended and his shoulders dropped. This allowed him to have much better head control and more active use of his arms and hands. Ben then continued to change over time as we carried on with the exercise techniques learned at Advance.

Five years on, and the improvements in Ben have been wonderful. He is now very interested in everything and everyone around him. His level of understanding has improved greatly, as has his ability to communicate. His improved posture, balance and strength means that he is now able to enjoy swimming and horse riding activities.

We are certain that the changes in Ben are due to the Scotson Technique exercises. The staff at Ben’s school have been amazed at his progress over the last five years, and have embraced our suggestions to include parts of the Scotson Technique into the daily activities for all of his class.

We all look forward to our visits to Advance. The positive and friendly atmosphere at the centre is an ideal environment to learn the techniques and also to learn about what is happening to your child in an easy to understand way.

Sonny’s Story

Sonny is now 9 years old.

Sonny was starved of oxygen at birth and diagnosed with spastic quadriplegic CP. He was not expected to survive let alone to walk! We started treatment at Advance when he was 2 years and still could not sit unaided. We never looked back.

By 7 years he was thriving at mainstream school but this year 2011 Sonny now 9 years old began to walk independently!

Sonny walks around the school totally independently. He uses his walker at playtimes for stability but rarely uses any walking aid out of school.

His balance is improving weekly. He can walk up and down kerbs and during our last visit to Advance we visited a park where he was able to walk up the steps to a slide using his hands to pull himself up.

In June 2011 Sonny ran his school sports day independently. He has gymnastic and swimming lessons and just completed a horse-riding course.

He is a very sociable and popular boy with loads of friends. He has good age appropriate concentration and no behavioural issues.

At school he is able to write (although a bit slower and untidier his peers) and has developed excellent computer skills.

Sonny always has his exercises done after his bath and often falls asleep whilst I am doing them.

Added to this Sonny Loves having his exercises done.

Review of our attendance at this year’s Autism Show in London

By Linda Scotson, Director of Advance

There is always a wonderful kind of Carnival atmosphere at the Autism Show. Visitors are warm, engaging, curious and the children are out to have fun. We have a stand well positioned a little back from the entrance on the main thoroughfare through so quite soon both families and individuals were surrounding us asking questions, learning about what we do and coming back for more.

Blissfully all four trustees were on our team as well as Ken, Lili, myself and Doran (from whom no one can resist an offered leaflet).

This year I talked at the hub theatre on ‘How to calm the stressed ASD child.’ I recently read a study showing stress (i.e. more oxygen demand than oxygen supply) reduces or kills newly developing brain cells in the areas of learning and memory. This evidence really helps to explain why treating breathing in ASD and so reducing stress has such good results.

My audience had occupied every chair and bit of available floor space and seemed more receptive than ever to the view that breathing plays a truly central role in both the problem and it’s the solution.
Somehow we all still had voices left on our return and already today Monday families we met at the show were already enquiring.

Doran’s recent Daytrip to the National Art Gallery in London

Doran looked amazed with eyes popping out as he gazed up at the majestic classical style of the National Gallery with its eight tall columned portico topped proudly with its magnificent dome. This awe-inspiring sight told him immediately today was going to be an amazing artistic adventure.

His art class was soon to break-up after a few years comradeship. This was the nostalgic last group day-trip to a London Art Gallery we would make together. This time his art tutor arranged for him (and me as his travelling companion) to visit London’s National Gallery.

Despite his admiration for the famous artist Turner, Doran also loves the light and energy of the Impressionists and luckily there was an Exhibition of them he was eager to see.

Generally, on gallery visits the texture of paint fascinates Doran. However, this visit whilst we stood before these wonderful paintings, his eyes began discovering the movement and light depicted by the paint strokes and the interactions of the painted figures. I found myself explaining the importance of perspective and the relationships of the figures to one another as we looked at Manet’s painting of his pupil Eva Gonzalès. This is an interesting area he is keen to explore for both his artistic and social development.

Doran uses sunlight and shadow in his own paintings to create atmosphere so he was really drinking in all the impressions could offer.

I’ve watched Doran’s painting develop so I was keen to encourage him to recognise the need to apply all his senses to an artwork. For example if you paint a musical instrument, it is evocative of sound playing not just visual imagery. Interestingly, Doran does already apply this transformation to the hissing effects he hears as a result of from his tinnitus, which is why he tends to paint waterfalls regularly. He caught the idea that he needed to develop and apply his other senses to his work too.

Afterwards, we strolled into the general exhibition of permanent works. This consisted of many classic Renaissance era artworks including masterpieces such as the Rubin’s Leda and the Swan and Bronzino’s Allegory called Venus, Cupid, Folly and Time and later favourites such as Constable’s Haywagon. As Doran’s paintings also tell hidden stories, he was full of questions and I did my best to interpret the allegories and symbolism in these works for him.

A major highlightfor both of us was seeing the very famous masterpiece by Vincent Van Gough, his Sunflowers.
Next was an equally famous Impressionist painting by Van Gough ‘Lilies under a bridge’. Van Gough is Doran’s hero and he viewed these paintings with a combination of comradeship and awe.

“Doran is in his heart an Impressionist and the vibrant light is something he tries to create in his own painting,” Linda reflected, “the atmospheric quality of the Chagel’s also fires up his poetic imagination.”
This visit allows Doran to explore the reasons why he loves to paint. As we both viewed the National Gallery from the outside departing upon the no. 24 bus after an amazing artistic adventure. Doran vowed we should return soon for further exploration.

Linda speaking recently at Crawley Treating Autism Support Group

Linda recently spoke at the local Crawley branch of the charity Treating Autism (TA). About ten very interested families attended including a London based TA trustee and two members who travelled up from Worthing.

Linda began by summarising the course of her life trajectory, first as a Mum with a special needs child and later a researcher.

Light-heartedly, she included some humorous anecdotes about Doran’s early years, but also emphasised difficulties Doran faced especially in later childhood. These regressions encouraged Linda to think unorthodoxly on her way to becoming an MPhil/PhD researcher.

This research led her to emphasise the little noticed, subtle but far reaching influence that breathing has upon physiological, and cognitive human development.

Linda clearly presented why abnormal breathing in a special needs child became central to her academic research, which forms the theoretical basis of The Scotson Technique (TST).

All present listened intently as Linda articulated – animatedly at times – the important details of why children with ASD are trapped by their abnormal breathing and why recognising this is crucial, relevant to the understanding and treatment of ASD.

She then explained the effectiveness of the very light gentle pressures of TST and how parents can apply the technique at home after training at our Centre in East Grinstead.

At the Q&A session, which followed, she explained how TST can be successfully delivered even to hyperactive tactile defensive children and how parents report its calming effect.

Linda gained an enthusiastic round of applause when she had finished her talk indicating audience approval. The organiser Jo-Anne presented Linda with a bouquet of flowers after the event. Linda pointed out her aim was to provide the necessary control studies to demonstrate that ASD was a treatable condition that could be clearly explained.

Commenting on Facebook afterwards, Jon Daniels, Trustee of TA remarked that it was a, “Fabulous presentation by Linda today.”

Afterwards, we spoke to the families and discovered that a local support group in East Grinstead meets monthly where Linda can speak in the future.

Lillie’s Story by her Mum

Lillie Klawinska-Disson is currently 1 years old. She had a normal birth and an uneventful pregnancy. However, when she was 5 months old her Dad found her not breathing in her cot! He immediately performed emergency resuscitation on her.

When the Paramedics arrived and had examined her they said she was without oxygen for a minimum of 24 minutes, but she managed to be revived at home where she took her first breath. Afterwards, she spent 7 days in intensive care where the outlook was not positive. Doctors were unsure what had caused this, as they could not find any medical explanation. Lillie suffered a near miss cot death. As this is unheard of, her prognosis is uncertain. As a result Lillie now has severe hypoxic brain injury.

Lillie cannot eat and thus requires a peg feed. She further has no voluntary control over most of her muscles and requires 24 hour care.
A few months later, Lillie started at the Advance Centre in November 2014 and since starting the exercises and oxygen therapy we have noticed some positive changes in her.

Lillie is more alert and a lot calmer once she finds the right breathing pattern. She still struggles with her breathing, but like any neurological condition rehabilitation is slow and I’m confident she will improve even more than she has already.

The Advance Centre gave us the opportunity to meet people affected with disabilities in their family, and this was so important to us as disability can make you feel so alone.

Many thanks to Lillie’s Mum for contributing to our blog.

Annual Review of the year by Linda Scotson, Director of Advance

2014 was an exciting year for Advance and we thought you’d enjoy a record. But first, most importantly congratulations to you all. We have been delighted to see how all the children have been thriving over this last 12 months, thank you all for your reports and stories.

You may remember Caudwell Children had a surprise for us at the end of April when we had a call asking if Peter Andre (who is a Caudwell Ambassador) could make a visit and would we mind if they filmed it. Linda Scotson of course didn’t know who he was, but the parents soon enlightened her and somehow the day came Advance was very full. Peter arrived with his partner who is a medical student and with their beautiful 3 month old baby girl.

He just gave his heart to everyone, like a lifelong friend. Peter very considerately listene d to all the parent’s evocative stories and hopes with attentive empathy. He further magically interacted with the children themselves. There were also of course cakes and buns and tea and laughter and a party atmosphere around the therapy with plenty of wonderful photos as souvenirs.

A local prep school Brambletye, known for its generous hearted parents and friendliness of its students and staff made us their charity of the year. David Holden their magnificent art teacher who put us forward is also a runner like Doran.

Doran began attending Dave’s Sunday morning art classes and they ran the Eastbourne half-marathon together in one hour and 36 minutes. Later in June Dave, Doran and his good friend Ross (an Advance father) ran the Seaford half-marathon in 1 hour and 45 minutes. Doran fell a hundred yards from the finish, but notwithstanding bloody knees with his friends help he rose from the promenade and went on to a glorious finish with £2,000 sponsorship money raised. Fundraising is crucial for Advance. We are enormously grateful to all of those who have helped us to help more children and especially to The Tree of Hope and Caudwell Children charities that are always unfailingly there to support our families.

In mid July, Brambletye School held its famous annual art Auction for Advance. Two of Doran’s watercolours went for £50 each and an oil painting of Linda’s which she dug out of the attic went for £100. Gradually more and more paintings by local talented Brambletye staff, artists and ex-Brambletye students, now professional artists went under the hammer for Advance.

Come September the school had raised £15,000! This is not only keeping us solvent, but allowing us to make vital repairs, to buy a new mandatory deluge tank for the HBO chamber and to help more families in different ways.

After weeks of preparation we returned again to the Autism Show for the 2nd year running. Our equipment consisted of mainly flip boards and didn’t weigh a ton this year. We didn’t get lost finding our way to London ExCel Exhibition Centre this time, nothing broke down and the sun was shining. Our display stand was extremely busy with concerned and curious parents finding out about TST.

Significantly, Linda was one of the speakers giving a PowerPoint presentation allowing more families to understand why abnormal breathing underlies so many of the symptoms that surround autism/ASDs.

We were well represented by all three of our enormously dedicated Trustees as well as Linda, Ken, Lili, Doran and Tracey Hall-Roberts and her daughter Tatijana who has used TST herself effectively for some years. We were delighted when Tracey after giving us so much support over the years also agreed to become our fourth Trustee!

Quite a number of families contacted us after the show and we were glad that we had already fitted child gates across our doors.

Since we were booked to attend the Treating Autism Conference at Brunel University during November we decided to produce a comprehensive well referenced booklet on Breathing and Comorbidities in ASD.

In November, Ken, Lili and Doran represented us at the Treating Autism Conference. Doran is increasingly able to engage parents and express himself and all three felt the warmth and courage of the families attending. The phone rang Monday morning upon their return with a family booking after having read the booklet on the train home.

Our next venture is to produce a similar booklet for parents with children with CP and developmental delay which will supply very clear factual information useful for parents themselves and when they are talking to their clinicians or with other parents.

After a long and interesting journey Linda’s MPhil/PhD was accepted by The Institute of Child Health at University College and Linda also gained a new supervisor Paediatric Neurologist Professor Fenella Kirkham. This meant overnight the TST theoretical basis was acceptable academically although the MPhil/PhD upgrade and the viva voce still lay ahead.

A month later in July Linda gave another PowerPoint presentation this time at the University for her MPhil/PhD upgrade. Although rarely nervous when public speaking this time her knees were shaking. When she asked for questions expecting a hard time instead she heard Professor Brian Neville say it’s, “very well written and everything is self explanatory.”Ken who was with her for moral support probably understood she had passed before she comprehended it.

Moreover, Professor Kirkham suggested in putting one of Linda’s studies on the effects of breathing on chest size structure as a poster presentation into the British Paediatric Neurology Conference at Newcastle in January 2015. The poster was accepted. Now only the viva voce lies ahead to achieve her Doctorate next year.
However, on Professor Kirkham’s advice and encouragement Linda has now applied for funding for a cross-over study of TST hopefully to be undertaken next year and once successfully completed TST will be clinically recognised .We greatly appreciate your support.

2014 also saw the Advance Team travelling again. Linda visited Advance South Africa where she was also working with severely disabled children at a respite centre in downtown Johannesburg run by a visionary blind woman called Angie who rapidly became a TST therapist. Unphased by jetlag Janos went to see families in the USA and Dubai. Lili and Linda also spent a January weekend in Spain giving an evaluation and seminar, feeding very engaging stray cats and were very touched by the tremendous warmth of Spanish hospitality.

When six months later Linda returned to South Africa the respite children who had been previously mainly twisted on the floor with little interest in their eyes were transformed into personable individuals now all relaxed and pushing up on their arms taking an interest in their toys and in each other and absolutely loving being photographed.

Moreover, their transformation appeared all the more remarkable having been made partly by their parents who came into the centre in the evening, partly from the staff most of whom had learning difficulties themselves and partly from young people from a school who came in twice a week and delivered the pressures under a “Cheerleader” who chanted out the exercises e.g. down 1,2,3,4, up 1,2,3,4, pause, pause, pause!!
Besides celebrity visits we have many families travelling long distances to see us from Spain, France, Germany, USA, Scandinavia and at least ten families from the Russian federation who have also became part of the family. We enjoy the fun they bring as well as the pleasure of seeing the results of their months of dedication to their home exercises on their increasingly lively and able children.

Around this time Lili began asking you all for children’s stories because we are reorganising our CP website to help families with children with developmental delay and CP children find us more early (our sister site http://www.treatbreathinginautism.com seems to be working well). We are now welcoming undiagnosed children who according to parents reports can clearly also be helped by TST. We have many new wonderfully inspiring stories which are also going out regularly on our blog. We rely heavily on your stories to help other parents find out what the approach can do, warmest thanks to all contributors.

Linda’s next step will be the viva in the New Year, but she continues to research and refine the application of TST so that instructors will eventually be able to teach it consistently across the country.

Recently, Advance visited two inspiring charities developed to help young people with ASDs/CP: The Autism Trust at Polly’s Place in Sunninghill, Berkshire and The Tree of Hope Centre which comprises a cafe and a shop in Tunbridge Wells, Kent. Both locations are ideal for us to work towards an Outreach programme to teach families TST who are unable to travel to Advance and with our charities mutually supporting one another we are planning to make this all happen in the New Year.

Finally, one of our Trustees Sarah Pratten has opened a Facebook group dedicated to keeping TST families in contact. If you have undertaken TST then you are very welcome to request joining the group at: https://www.facebook.com/groups/1530827207177358/

We have all truly enjoyed meeting and working with you over 2014 and are here for your help and support in 2015.

Merry Christmas and a very Happy New Year to you all,
Linda

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Daniel’s Story

Daniel is 10 years old. From the age of two we struggled to control his behaviour and emotional outbursts. Because he never displayed this behaviour at pre-school and later school, it was hard to get anyone to admit he had a problem. We took him to countless appointments to see paediatrician’s and specialists in mental health in children (CAHMS) but they offered little help or support.