A new School Year New Battles to Fight

Christina headed off on her first day at secondary school more excited than nervous over all and has come home feeling OK about it. Joshua's Second year there seems to have got off to a bright and cheery start. School Bus arrived for Eve and Rosie, Eve's heart rate raced up above 160 as soon as I sat her in her chair! I have spoken at length to the Metabolic Nurse who has in turn talked with the Consultant and we are just dealing with genreal Leigh Disease issues and nothing is going to make it better other than rest and time. On balance we all agreed that Eve would have some benefit from going back to school and so long as they let her sleep when need be then she should be fine to go. So off she went! Rosie has been having loads of seizure activity over the last week despite regular rescue medicines, no idea what was going on as she didnt really seem ill but very tearful at times...then yesterday morning she started her period! So that explains all that then! But she was still agitated tearful and not able to control herself very well. Getting on the bus this morning she kicked out at the escort who got quite cross with her, that made me really upset as Rosie is not just being nasty! I felt too cross to say anything so just came away in tears. Once the girls were on the Bus we heded off to take Joshua and Christina to school then on to take Jonathan to meet his staff at college and for a chance for David to actually have a look round. Jonathan is due to start on Monday. We have worked hard with him to help him understand he has left school and will be starting college. This mornings visit was aimed at him having a better understanding and acceptance that he will be going to college on Monday. The visit went well. Jonathan went off with his mentor and one fo the teachers he will spend a lot of time with. David and I went round with the manager. It is so obvious whilst walking round t his place that the clients come first in everything everytime. Once we were back chatting in the managers office one of the staff who ahd been with Jonathan came in to ask if Jonathan had Music on his time table? He didnt, She asked if there was anyway that it could be incorporated as she felt it would be really good for him to have regular Music Lessons. The manager looked up with a twinkle in his eye and said. We usually leave and adjusting of the timetable to after the kids have been here a few days! We all laughed and then they both looked through Jonathan's time table realised it was really simple to make a three week rota with him and two other guys and give him Music every third Tuesday! Simple Done! At some point we came to realise that no one had organised the transport for Jonathan to get to college. I left clutching a phone number for the connexions lady who should have organised this. I felt confident she would put it right. Fast forward to this afternoon. I spent two hours on the phone between Connexions and the Education Authority trying to sort something out. Connexions were really appologetic hands up it was there fault, very gracious but did not really go far towards sorting the situation out. That was down to me! Transport services were very Blaze, they would send a form for us to fill in and return then they would get to it eventually and organise transport it would probably take 10 working days! Not a lot of use when he is expecting to start on Monday. I asked if he could be reinstated on the bus with the girls and then taken on to college two miles from school once the girls are dropped off? No they cant arrange transport without the form and information about the child. But you have it all from last year nothing has changed since then other than the placement. But his entitlement ended in July. No he is still entitled, your provision ended in July No without the information we dont know if he would be entitled now. UUUM He has not recovered from Down Syndrome, He has not recovered from Congenital heart and Lung disease, nor his hip issues. He has not suddenly become fully independant over the summer. Well we cannot do anything without the correct paperwork. Please put me through to someone who can make that decision please. I will put you through to my manager. Repeat all of above plus a bit about responsability to the student, and not being able to arrange transport by a phone call, I explain that I am only asking them to put back in place what was in place last year...not send him with another service provider or expect them to take someone else out of the seat. The bus is dedicated to our kids, no other child travels on it and they cannot put anyone else on it because of Rosie and Eve's needs. The bus has 7 seats and only takes two wheelchairs, Jonathan would not be compromising anhyone. No they cannot do that. Please put me through to soemoen with authority! I then get onto pupil services At last spomeone seems to have a tiny weeny bit of comon sense and runs through the paperwork with me over the phone confirming everything is the same. and changing the placement details. She promises to get it through to transport services today, but they wont do anything without the check for our contribution to the transport costs. I remind her that is an illegal charge, she says, oh we have had this conversation before havent we, I agree. I point out the law in great detail and she tells me I need to take that up with someone else, the trasnport wont be arranged without it. I agree to send the check but also assure her I will sue for the return of it. Still though it will take the transport people 5 days at least to get the transport reinstated! We seem to have ben running round in circles for three hours! I had planned on a sleep this afternoon having been up with Rosie since 3.15 am! It is now 3.50 and the bus is arriving on the drive! Eve is looking very weary, apparantly she managed to be awake for a total of 1 1/2 hours at school but was happy to see folk. Rosie was OK and had a school set of clothes on. Escort seemed OK and was keen to help with Jonathan issue. They can see no reason why they cant take him. So tonight I have rung the TAXI Firm and they are happy to take him if LEA agree. We will pay the cost of taking him from school to college until the transport is in place. Hopefully they will just add Jonathan back to our own transport. Please pray for this outcome, it is the best option for Jonathan. Hugs_________________