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To those that know him, Freddie is a bright, happy, vivacious and loving little boy whose bravery in the face of adversity overwhelms and humbles us at times.
Despite all of this, life for Freddie is naturally not without its challenges and difficulties. As a result of his condition (congenital bilateral perisylvian polymicrogyria) Freddie has global developmental delay and intractable epilepsy. His poor gross and fine motor skills make simple tasks such as sitting, walking, independent movement, using his hands etc extremely hard for him and he is dependent upon others for all his needs.
Freddie attends the PACE Centre in Aylesbury, Buckinghamshire three days a week. Their principles of teaching are based upon the foundations of Conductive Education. We have found this repetitive, holistic, trans-disciplinary approach so effective in dealing with Freddie’s problems and have noticed a tremendous difference in him and how much he has developed as a result. He receives a tailor-made programme delivered by specialist staff who provide a learning for life through the intense and integrated therapy and this has proved to be absolutely fantastic for him.
Since he began at the centre in 2006 (at the Parent and Child Group, where they educate the parents about best practice at home) he has learnt such things as how to take some steps (with facilitation) pedal a trike a short distance, make choices through eye pointing and vocalisation and use a potty to open his bowels (we’re still working on wees!) and his huge sensory processing problems are constantly monitored and addressed. As a consequence he has become a more independent, outgoing and content little boy with the dignity to be more in control of his life.
As you can imagine, however, this type of education does not come without a price (especially as every child has one-to-one help and facilitation, as well as various therapists throughout the school day there) and unfortunately we receive no statutory funding for this. Our Local Education Authority does not accept the merits of Conductive Education (or sending a child out of its' local borough to receive it) and therefore we have to fund Freddie’s education ourselves.
The Local Education Authority have always been disparaging about Freddie's achievements and are quick to highlight them as ‘infinitesimally small,’ and focus on the things he cannot do. Whilst what they say may be true we have always chosen to celebrate his accomplishments as monumental triumphs and refuse to accept their opinions, believing he has the right to an appropriate education no matter what. We have, therefore instead, opted to keep Freddie at PACE where he is happy and learning and safe and secure in a familiar environment with a small group of children with similar difficulties and learning at a comparable rate.
Consequently, as this places a huge financial strain on us as a family (we have two other children younger than Freddie) we are now in a position to have to rely on the benevolence and kindness of people who may be able to assist us in this plight and to see if we can gain any funding towards the costs of the Conductive Education. Keeping Freddie at PACE, will cost tens of thousands each year and so we would be eternally grateful of absolutely any donation.
As a result of the centre and all they have done (and continue to do for him) we have a changed child. We have been able to transfer his newly acquired skills successfully into the home environment and this all makes us feel so positive about the future no matter how much adversity we may still have to face. Freddie thrives at the PACE centre, and we see his achievements as remarkable. It would not be fair to take this wonderful opportunity from him.
