Bridge Building

[Guest guest]

Hi All,

Thank you for all the prayer and support that has been ongoing for us over hte last three weeks or so.

I did go to school yesterday with my letter for the nurse, In the letter I explained that my decision to come and try to resolve our differences was born of the funeral on friday, I explained that my heart felt very heavy for her as there would be very few people understnading the grief she bore. I then went on to ask if in the light of the struggles this child had overcome surely we could surmount our own difficulties.

When I got to school the head teacher met me which was a bit of a shock, I had hoped to sneak in with paul unseen and plant the letter on 's desk with a note to say I was in the coffee morning if she wanted to talk, However was nowhere to be seen and I ended up in the Bizarre situation of hosting a coffee morning at which the head teacher of the other school was coming to talk to parents! The last time I saw this man I was saying how there was no way I would set foot in this school again and had no faith left in the system in place there, pleading with him to take my children at his school a term early!

However It all went fairly well, despite my nerves having me making several visits to the ladies. at the end of the meeting the nurse called me to talk with her in her room. She admited she had called the meeting because she felt we exagerated the children's illnesses and always saw our cup as half empty rather than half full! She felt the need tot alk with other professionals who dealt with the family and see if they saw the same thing. She informed me that as a professional she cannot take a parents word for anything and must have proof from other professionals! I was quite taken aback but determined to keep on trying to build the bridges nesecary to continue working with this woman. I manaaged to keep my temper and keep putting out my side of the situation. I expalined that I always wherever possible got her the written informatiuon she asked for, she admitted that a lot of the communication problem was between professionals and that everything we had ever said was backed up in the children's notes. I still cannot understand why as a school nurse she feels she has a right to any further information than what we want to give her. We do get written reports for her from the ward and the clinics but they come from the doctor to us to be passed to who we want to see them. I think she would rather have them sent to her without our knowledge. That will not happen while I can help it.

I feel that I have laid the foundations and it is now up to her to accept them as good foundations or not. We have sent the children back to school, we have spoken with the teachers and the physio, the physio had forgotten that we had got clarification from Mr that was to be discouraged from active exercise. I made her get the file out and pointed out to her the letter she got from him followed by the letter I sent him followed by his response to me. She did back track and appologise.

I have explained to the teacher that is not benefitting from being too exhausted once he gets home to participate in home life. There has to be some balance. We are asking that they make some sort of job for him to do in the playground like tending the plants or looking after a wheelchair bound child, something that enable him to feel important whilst keeping him safer.

I was horrified to discover that the physio had gone and ordered another pair of pedro boots for Rosie, these cost in the region of £90 a pair, Rosie hates to wear shoes they take the skin off her feet and we are always getting cross because they have made her wear shoes. I never put shoes on her outside of school as she requests not to, Why then pay so much money for an instrument of pure torture?

I am still unhappy about them being back at school but have to wait it out now and see what happens. I saw a program on the TV the other night that showed a nursery that has web cams everywhere so you can log onto the site and see what your child is doing, I wish we could do that with school!!!

I am desperately hopig this all works out, I have to keep moving forward in faith and I certainly believe I have done so so far. Please continue to pray that this works out.

Much LoveTina Hillier Mum to , 12 years old and possesor of an Extra Special Chromosome. Rosie 10 ( who enjoys a life enhanced by the Joys and Trial of CdLS) 6, A budding Artist and Singer, Famously ignoring the fact that his eyesight is deteriorating. And who is 4 years old and a big school girl now!

Isle of Wight UK

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