3 Reviews and a CIN Meeting!

It has been a bit of a day today! I think Tia may have a point if this weeks days are anything to go by!

This morning we had Jonathan's Review, followed by transition plan followed by Overview of the provisions of the Sense College we are hoping he wil attend.

His Report for his final year at school tells of a polite helpful interactive young man who tries hard i everything he has set befoer him. A young man who is a pleasure to have in the classroom, who befriends those who seem unhappy in the playground and who is eager to please whoever he comes into contact with throughout his day, be it at school in the community or in any other setting!

A young man who has possibly not made much tangible progress on the Pivot's graph of accademic achivement but who has achieved boundless things where it matters for his future. In his confidence, his independance, his communication and in his personal growth.

His health has remained reasonably stable and his attendance at school has probably been the best of any of his accademic years. His presence within the school will be missed by all!

Moving on then to his Transition plan. The Secular College was happy to write a letter turning down Jonathan's application for a place there. Just in case you are wondering....that was a major result for us and for Jonathan. There is no way he would cope in a mainstream, college without constant one on one support. In that situation he would learn dependance not independance. It would not be a safe environment for him and the hustle and bustle would encourage his withdrawal into his own world again. The Sense college will encourage and support him to be as independant as he can achieve. The Connexions worker has been brilliant, ensuring all the right things are written in the various reports to ensure the funding panel can see the need for this specialist college and not be blinded by finance and decide it is too expencive. Just about everyone who knows Jonathan agrees that Sense is the right place for him and we just hope and pray now that funding will be agreed so that we can strike that concern off of our anxiety list.

Then the manager of the Sense College gave us an overview of their postition, an outline fo the curriculum that they had planned for Jonathan from September and were really enthusiastic about welcoming him into their fold.

So that was Jonathan's needs addressed and we could move on to Rosie. More people arrived and more papers were distributed, we changed gear to look at Rosie's progress report. Asked to describe my views on the school report I was able to form some sensible sentences and say how grateful we were for the schools acceptance of her, their acknowledgement that there was more intelligence within this child than she had been given credit for, we were also grateful that the school was freely ready to accept their faults and put things right, to listen to our views and work with us to meet Rosie;s very complex needs. Our concerns were not about the on paper accedemiv achievment but the hidden skills and learning that went on that was not quantifiable.
THe head then thanked me for my support but was keen to show the amazing progress Rosie had made in accademic subjects that were VERY quantifiable. She had shown progress in EVERY area on the Pivots graph and in some instances had crossed 2 P scale bands.
We moved on to her health issues and really said very little as she has been in reasonable health for the last few weeks and apart from the loss of identifiable cycle to her Epilepsy it did appear that there was more control particularly of her non convulsive siezures and this was probably responsable in some part for her improved concentration and cooperativeness.

Moving on to her Transition plan we looked at the route to College over the next two years, Rosie will leave school in July 2011 and will obviously need a specialist provision. We do not want to look at residential collegeand there was a very light hearted moment when we discussed the need to through the motions of applying for the mainstream college. Notions of taking her and leaving her for twenty minutes with the assessor brough howls of laughter. Rosie will in no way be a suitable client for a mainstream college and it is probable that she too will be seeking funding for the Sense College.

At this point we broke for toilet and coffee. Some people who were only involved in Rosie and Jonathan's situation took their leave and then we reformed to look at the rest of the family. As the AYC worker had another meeting to attend at 1 pm we decide to look at Joshua and Christina. We do have some concerns about their emotional situation. They have both had some major issues to deal with and Joshua in particular has seemd just sad at times. We asked for the AYC support worker to try and find time to spend with Joshua to see if he would be helped by an opportunity to offload away from us. She has rung this evening and made an appointment to take him out on 7th August.

Once we had discussed Joshua and Christina's very different but equally important needs we moved on to Eve. I was able to share with the professionals there the official diagnosis and the results of the sleep study, Everyone shared their experience with Eve and all agreed she was tiring more easily but still maintained her enthusiasm for being at school and experiencing the curriculum activities alongside her peers. I expressed concern over the overly positive nature of her report, the fact that some of the comments appeared to me to be out of date by around six months. The head teacher assured me the reports would only have been prepared in the last four weeks or so but that some of the achievements and records would have been taken from across the year.
There was much discussion around the health issues, the Physio input and the need to find some suitable seating to give her a change of postion from the wheelchair. This is an ongoing concern as the issues around positional apnoea and spinal issues mean that we have really struggled with finding any suitable seating.
We discussed the social care side of things, the continuing care input and the ongoing difficulties for us in meeting Eve's 24 hour a day care needs.
We then went through the statement and although this was only rewritten in March there was much that needed changing or removing completely.
By the time we finished and were ready to leave we had been there for almost 4 hours. It was another long grueling day, facing up to all the concerns and issues as well as celebrating achievements had left me totally washed out! A friend of ours used to say she felt like a pice of chewed string....I think I could totally appreciate her feelings by this time.

In the meantim Rosie's support worker from school had rung to say the gastrsotomy appeared to be blocked solid! I told her there was a new one in the bag and she could either perservere with trying to unblock it or just give up and change it! She was horrified at the thought....thankfully the Nurse specialist for school training was with us at the meeting and offfereed to go over and do a teaching session on gastrsotomy tube changing! Nice one....we had planned to change that tonight and he saved me a job. He rang a little while later to tell me the session had gone well and the tube had been blocked solid with sand!

This evening I had no cpacity left for even thinking about a meal....I am so greatful for the invention of Fish and chip shops!

Good night!