The Back Story.

I finally fell pregnant with Theo after years of trying, when he was born he weighed a huge 10lb 7oz :) it was apparent from birth that he was not like other babies but it took me 18 months of nagging to get a doctor to listen to me.

Theo was referred to Dr Higgs at Bath, she diagnosed him as ASD when he was 18 months old, I knew this was not all so after persisting and a vary worrying period when we thought he had cancer; we found the answers we were looking for The has the following;

Subependymal grey matter heterotipa

Epilepsy and daily seizures

Autism

Language Difficulties

Poor balance, motor skills, coordination

Significant allergies, eczema, anaphalyxes

Neuronal migration syndrome

Learning difficulties

Sleep difficulties

Adhd

Add

PDA

Variable Scoliosis

Theo also uses a wheelchair and cannot be left alone, he has very low muscle tone which means he cannot do simple things like hold a knife and fork nor do his shoes up, I still wipe his bum.

Theo is a fab little boy, he has a younger brother Jacob (9) but no friends, hes not been invited to a party since he was 5

Theo has the following people working on his behalf;

neurologist

pediatrician

gp

Disability social worker

Lead send worker (who decides ehcp)

Educational Psychologist

SALT

Behavioural nurse (never met him and discharged him)

CHAMS (discharged him after seeing him once)

for 4 years I have been fighting to get him seen by a physiotherapist and Occupational therapist - I'm still waiting

The above specialists have Helped Theo in many ways and his medical team as constantly seeing him, however, it has come to the point in his life that the council's Educational Psychologist, SALT team and OT/PT reports - along with his original Statement of Educational Need has not been taken into account by his SEND Lead worker and their team . They have decided that Theo needs no extra help in school with his education or complex health requirements. Although his original Statement of Educational Need included all of the requirements.

The money raised is being used to help fund all the specialist reports that need to be carried out before I appeal the decision - this case in all likely-hood will go to tribunal. I will win this as Theo will never "get better" and will always need extra assistance, although the council seem to think he will.

for any money raised that does not get used to help pay for the fees to help Theo; they will be sent to North Wiltshire Portage Services who are a charity that employ Early years sen workers to go to children's houses for a couple of hours a week. the children who benefit greatly from this are children with all kinds of Disabilities. They are essentially given the same opportunities as a child would get in pre school but on a 1 to 1 basis and tailored to their specific needs. I have always said that if I won the lottery I would help this charity as it costs 1500 a term per child.

I am not the kind of person who wastes money and if its money for my children it goes to them, so I think this is the best place for any extra funds go x