Autistic Spectrum, Kabuki Syndrome, Spina Bifida, SLD

“Everyone was amazed how well Mary coped….”

A Brainchild group member

R & I found the Brain Child Programme interesting & entertaining. Mary found some of the exercises quite difficult, due to the extent of her learning & physical difficulties, but tried really hard at home and loved the ‘wobbly jelly’ and ‘bug watch’ exercises

We all enjoyed the Saturday sessions, meeting other families and sharing experiences.  Mary particularly loved to watch the other children and then copy the activities at home.

Life with Mary has always been very demanding, needing 24/7 care.  Mary has severe & complex learning difficulties, suffers with high levels of anxiety and is on the Autistic Spectrum.  She was diagnosed with Kabuki Syndrome several years ago.  Mary also had major corrective bowel surgery at birth, scoliosis and mild spina bifida.  Starting the BrainChild Programme was very important to our family, it gave R, myself and Mary’s two elder sisters something to focus on and a programme of exercises to share with Mary.  Support  in all areas had been limited in the past and starting the Brain Child Programme was a breath of fresh air.

Last year Mary’s behaviour and anxiety levels were at an all time high, we were trying all kinds of support networks, but with little success.  Mary’s hormones and physical status were causing her great distress (a teenage girl trapped in the mind of a toddler). Meeting Viv and starting the Brain Child sessions was a positive step towards helping Mary cope with everyday life.

Mary often finds it difficult to learn new things and it took her longer than most children to complete a series of exercises.  We all feel that Mary is calmer now, will sit quietly for short periods of time, and has just started to interact with other teenagers (especially boys!).  This in turn has helped all the family to feel more relaxed in the company of others.  This weekend we spent a weekend camping in the lakes with around six other families, some of whom Mary had never met before.  Everyone was amazed at how well Mary coped with all the events which took place over the three days.  The relaxation exercises Viv prepared for Mary have been great and we’ve adapted them to meet Mary’s profound and difficult needs (sometimes I use them myself!).  All of the support we’ve received has made a difference to our daily lives.

A big achievement has been Mary being able to spend a little time away from the family and occasionally spends time away in respite care.  Her anxiety levels are calmer, she tries to let me know if she can’t cope with a situation, this in turn helps us all to support her when she feels sad or scared.

Mary allows us to sit with her more and spend more time together.

We all try to feed into Mary’s moods better and try to understand when her anxiety gets out of control, and we all use similar strategies to bring her back down to a lower arousal state.

This will always be difficult, but we use many of Viv’s techniques to help us all cope.

Mary has found many of the exercises difficult to master, but with patience and perserverance we have developed our own series of exercises that work for our family.  We intend to spend time each day on certain exercises which Mary increasingly responds to.  Thank you Viv for all your hard work and support with our special children.

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