Equipment Nightmare

We have five children, each of them has a specific set of needs. Some are obvious others not so. Some are fairly easily met, others aer not.



It is obvious Rosie and Eve need wheelchairs, it is reasonably obvious Jonathan needs a chair, it is not so obvious that Joshua has his own individual mobility needs.



Wheelchairs are dealt with by the wheelchair service, assessing the girls needs is not straight forwrad and can lead to difficult conversations and falling out with professionals, but they each have a chair that serves a purpose, both also have needs that the wheelchair service are not so keen to meet. Rosie because it is more of a social need to be a part of the family and able to enjoy her thrills at speed attatched to the back of a carers bike...this is sort of being met by another area of funding...only the company we purchased from have had a slight problem...the wrong courier picked up the wrong parcel and now noone is quite sure where Rosie's Kimba Cross Frame is! Apparantly the parcel has our name and address on it so hopefully it will arrive here at some point, hopefully before the weekend!



Rosie and Eve have other fairly obvious needs, for suction, feeding equipment, oxygen equipment....these needs are fairly automatically met by the Health Authroity, until of course we decide to go away....then we have to make specific arrangements with the different companies who supply the products/equipment and make sure that they have the correct order on the correct from with the precise details of where we are going...it sounds fairly simple until you start making the phone calls! The minutiae of detail needed is enough to drive a saint to drink!

So what happens when your child starts to lose their sight? not one of the children who already has a multitude of problems and is already in the Special Educational needs sector, but the one who is flying high in education and doing well in many subjects and suddenly cannot read the white board even when sat at the front of the class. Who cant read the teachers comments on his work and then cant read his own handwriting. Font 18 was good size to read and now he struggles to read 22. Suddenly the child who was recently registered partially sighted is now legally blind!

Coping in a mainstream school where there is very little understanding of VI, no previous record of teaching a child with VI and in some instances not even the comon sense to realsie that when a child says he cannot see anything on the interactive white board, enlarging nothing does not make it easier to see. Teling a child struggling to find an interest in History that you make it an exciting visual lesson, is not going to help when that child is blind!

Having an assessment for equipment that can photograph the white board, download it to oyur Lap Top enlarge it, change it's colour and even convert it to an MP3 file and then read it to you is fantastic! Then discovering that the LEA are not able to fund it and the Sensory Impaired service do not have any funding, and all the chairties you approach who do have open books do not accept children without life limiting conditions, is not really very helpful.

Having the knowledge that there is equipment out there, marketed by a company only 12 miles from your front door, is somewhat frustrating when you just need £5,000 to buy it with!


So we have an email out to the LEA telling them that this equipment HAS to be in place for Joshua during the holidays so he can access the curriculum effectively by Day One of the new term.
We have feelers out at a couple of Charities who may possibly open books in the near future.
And we have prayer!

Maybe you could join us in prayer that Joshua gets the Equipment he needs funded in time for him to enter year 9 with confidence.

Thanks!