Feeling slightly under the weather...... I feel a slight cold coming on, first cold I have had in 2 years, training went slightly skew today as well..... priorities of priorities took precedence.
However Its time to tell you about the Charity Brainwave, who there are and what they do and how they have helped my son Bastian.
Having a glass of water
or simply being able to write your name is taken for granted, please help those
to experience what you automatically do every day. On behalf of Brainwave,
Water for Kids & me, may you all be blessed abundantly & know that your
monies do make a difference.
After 4 years of research and struggling for information after being told by leading consultants and therapists that my son would not amount to anything, one day in the early hours of the morning I stumbled upon Brainwave's website, shortly after 2am in the dark and still of the night/morning and unable to sleep and armed with only key words that I thought describe my son, boom there it was, Brainwave, finally what I read before my eyes, seemed to all make sense, FINALLY, suddenly I felt overwhelmed yet relief all at the same time. Brainwave work with children like Basti and with new and emerging conditions all the time.
I am glad to say, that last year early November, I got a call from Bastian's geneticist with the most amazing news ever; as Basti is part of the world wide data base and also part of the CAMBRIDGE AND OXFORD MEDICAL RESEARCH TEAMS AND PROGRAMMES, they have finally found the defective gene and or complication. Basti is now 1 in 4 in the world (all boys) with this syndrome. The research is due to be published in the BMJ and World Wide Research Medical Journals in the next few months, we are just awaiting ethics and formalities to be processed. I cant wait to meet the other children and am looking forward to seeing what the outcome is.
Brainwave is an amazing charity that specialises in Children with an un-diagnosed condition. Brainwave have not only helped my
son but continue to help Basti who suffers from Agenesis of the Corpus Callosum
(neuro damage). They help him with muscular,
neuro processing, speech and daily functioning developments with a personalised
home and school programme. They continue to help and support children like Bastian enabling them to lead as ‘normal a life as possible’.
Bastian was 7 when he
first attended Brainwave’s South East Centre in September 2011. Bastian has a diagnosis
of agenesis of the corpus callosum and developmental delay of unknown cause, defect genes, as well as other daily motor and sensory functioning.
Bastian attends mainstream school however follows his own curricular, because of his agenesis, he is unable to read or write; I wanted to help Bastian
with his development, and to complement his current provision. At his initial
assessment, it was noted that Bastian was able to comprehend tasks; however he
did require additional time to process information. He was better at processing
information if instructions were simple and not overloaded with detail. Bastian
appeared to have some difficulties with sensory
processing, which was affecting his general development. He seemed to be
showing signs of sensory defensiveness with regards to tactile input. He was
under-responsive to proprioceptive input and appeared to have some body awareness
difficulties.
Bastian’s Challenge
Janet and Bastian
went home with a programme of exercises to strengthen his core muscles, improve
his extension against gravity, improve his motor planning and problem-solving
skills and to improve his body awareness. His programme included a brushing
technique and weight bearing activities (proprioception) to improve his processing
of sensory input. Bastian attended for his first reassessment in May 2012 and
showed improvements in his fine motor skills. His pencil grip continued to
improve and he was more willing to engage in written work. He showed better
concentration and attention since his previous visit and was more able to
listen and follow instructions. He now needed support to increase his self
esteem and confidence, as well as using everyday functional skills in a range
of settings. Bastian continued to have some sensory processing difficulties
with decreased awareness to proprioceptive and vestibular input. To help him
cope, it was suggested that Bastian incorporates more proprioceptive activities
throughout the day, such as weight bearing through the joints and pushing and
pulling activities, known as ‘hard, heavy work’. Bastian and Janet then
returned in January 2013 for his latest reassessment. Bastian was a lot more
confident and was more willing to try activities than he had been in the past.
Bastian had continued to make progress with his language skills, and it was recommended
that he continued to develop these skills in his everyday settings. Bastian was
provided with certain physical exercises to continue to develop his overall physical
strength and stability, as this will support the development of his fine motor skills.
He was also given activities to improve his concentration and alertness to help
him focus at school. When asked to provide a quote for this case study Bastian
dictated the following “Look at my muscles mommy, I am stronger now. Julie
helped me get strong. If my teachers forget about my Programme I go and get my
peanut ball straight away and I do my exercises myself, are you proud of me
mommy?”
Brief History of Brainwave
Brainwave
came into being when two people left the British Institute for Brain Injured
Children (BIBIC) to set up their own charity. In October 1982, the Charity was
incorporated under the name of the Kerland Foundation. It was not until 1995
that the Charity changed its name to Brainwave.
During
the 1980s and 1990s, Brainwave’s scope was wider than it is now. It ran two
trading companies: a Sports & Lifestyle Clinic and a mobile breast
screening service. The latter was contracted with the local health authority
and ran for nine years, finishing in 2000.
The
Sports & Lifestyle Clinic achieved local recognition, acquiring Referral
Centre status by the Somerset Physical Activity Group and was invited to tender
for ‘further healthcare work’ in 1994. This resulted in winning a substantial
GP referral contract the following year. The service was sold to Avalon Leisure
in 2000.
During
this time, Brainwave provided services for adults as well as children. These were
mainly people with brain injury, particularly those who had had a stroke. In
1999, a service to provide rehabilitation and respite care was launched. In
the 2000s, Brainwave refocused, dropping its adult provision. In 2008, it
started to implement a pilot to support children with Autism. Today,
Brainwave states that it aims to improve mobility, communication skills, and
learning potential, through a range of educational and physical therapies.
Brainwave no longer concentrates
exclusively on children with brain injuries but a whole range of conditions
including Autism and genetic conditions such as Down’s Syndrome.
Monies raised through my run will be split 50/50. I cannot thank Brainwave enough for their support, my 'Guardian to Bastian' and all the girls who so warmly support Basti and myself all the time. Were it not for Brainwave I would still be trying find a solution for my son's future.
With love and #blisterfreewishes
Jani
#UltraMarathonVirgin
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