Having fought to catch up with the washing after we got home from Hospice I then let it all go and am currently hoping the piles of mucky clothes spreading slowly across the utility room floor will look more manageable when I get up in the morning as I have no intention of doing anything with them tonight!
So Monday morning Jonathan, Rosie and Eve all headed off to school, whilst Joshua and Christina had an extra day as the staff had a training day. So having had a brief discussion of the options the night before we all piled into the car and headed off to Grantham for a wander around a town we hadnt previously explored. This turned into a cafe crawl, as opposed to a pub crawl in view of the children's ages and David's need to drive home. It was too cold to spend too much time in the outdoors.
It was a nice wander and browse through the charity shops, then we headed to a nice restaurant we had been to on the way home from various hospitals, we had a lazy long lunch before it was time to go home collecting Jonathan on the way. We arrived home to a houseful of carers and Rosie and Eve.
Tuesday Joshua and Christina went off to school Rosie and Jonathan headed off to their school and college leaving me and Eve at home. Eve;s carer was coming in time to bath Eve so I went up for a quick shower before Mel arrived. Road works along the road leading to ours meant that everyone was having to take a detour through the village to get here and so I was actually dressed and ready for dealing with Eve long before Mel arrived. Eve was really pleased to see her and we gave her a nice bath, washed her hair and then Dressed her nicely to go play downstairs.
Whilst Eve and Mel played happily in the lounge I was sorting Washing and arranging appointemnts on the phone and tidying the kitchen and fielding more phone calls, checking the diary and keeping an eye on the frolicking in the lounge. Before long it was 12 and Melanie was heading off.
The afternoon brought an appointment that went better than expected and I arrived home in time for David to head off on the round up of children. Rosie's afterschool club had been cancelled and so Debbie did not have time for any tidying before she was due to arrive, and then the phone rang, the driver had got himself lost trying to find his way around the road works, so it was almost half four before they arrived with her. thankfuly she was finding it all very funnny.
So Tuesday came to an end and Wednesday dawned. I had a meeting at school and then a dash to Grantham with Rosie's deputy head teacher to look at the provision there for Rosie. It was an almost surreal experience. Arriving at the college we had to speak to the Reception via an intercom to get them to lift the barrier to let us in. Then find our alloted parking space removing the bollard to get in. Then report to reception and read a notice about health and safety and fire procedures before signing in and being presented with one visitor badge between the two of us! We were eventualy met by the very nice lady who led the special needs group. She tok us to meet the group and the staff, all very pleasant and obviously loving their job and caring very much for the disabled young people in their care. We then went off with the group leader to look at the kitchen where life skills classed were held, and to view the remarkable Multi sensory learning environment. then on to the classroom. It was all very "nice" But it seemed as though the disabled group just used rooms in the college, rather than being a part of it! I am not sure if or how that mattered, it just didnt feel good!
I could see Rosie being happy, I felt she would be cared for, BUT!
The place where Jonathan is now, where we had hoped Rosie would follow is just so totally right! The whole college is family, it is one! each person is a member of the unit and the staff care for everyone, staff and student alike. They also care about the wider family. We get daily feedback, as soon as there is a concern we are aware of the concern and consulted about the remedy, I cant see that happening from this college.
However, it seems for now that SENSE is not an option for Rosie, (I am not prepared to give up on that but it will be a long hard fight!) So if Grantham is offered then it will be a far better option than nothing! We left with my mind swirling!
I then arrived home to a letter from my rheumatologist with very confusing information, an option for treatment that was not a comfortable one and not much in the way of support through the decision making. I needed to make an appointment to see the doctor. Now that is not an easy thing to do. Our GP's surgery does not take advanced appointments, to get an appointment you must ring at 8 am for a morning appointment or at 1pm for an afternoon appointment. So at 1 pm I was on the phone, engaged, tried again until at last at 1,02 I spoke witht he receptionist, BUT, all the appointments were gone. How could all the appointments that can only be booked at 1pm, be gone by 1,02? I tried to explain tot he receptioninst what I needed but she talked over me constantly and I could not get her to listen. I was very frustrated and unable to think about what else I could do. I needed to talk through this letter from the Rheumatologist but had appointments all the rest of the week and throughout next week so was going to be unable to ring at the allotted time when I had time in that day to get to the surgery! I was resigned to not being able to get there.
During the afternoon I was able to resolve some other problems by phone, had a visit from another professonal, organised a meeting at school for Joshua and then managed to consider an evening meal before the homecoming started. David and Joshua were going out to Archery so I had managed to get a light snack ready for them whilst Christina came in and put together the ingredients for a wonderful spaghetti Bolognaise to eat when they came home. I then spent the rest of the evening helping with her Science homework and helping the carer with Rosie and getting Eve organised for bed. before long it was 8 pm and David and Joshua were home. Where did the day go?
the week has continued in this manic way, I did eventually manage an appointment with the Doctor, he wasnt much help really and basically told me the smae as the Rheumatologist had, I have run out of options and this final option is my only choice! So I have an appointment with the biological clinic for assessment on 29th March, I guess that will be my best hope of further information. Whatever, I have to do something to get my symptoms under control, I cannot carry on like this and keep up the level of care I do.
Friday hmmm I know I have been busy but I cant remember what I have done.....think, think, think!
Oh yes, Joshua and Christina's school, I managed to have three meetings with different staff there, culminating in a talk with the wonderful SENCO who was having to appologise to me for the fact that Joshua had been presented with a day of tests he could not access. The advertisement for his LSA has not yet been put into print, and the GCSE Maths he was told he would be doing this year is now not going to happen because noone put in for his extra time and modified and adapted papers! Angry doesnt come close!
This coming Monday we are taking Joshua and Christina to look at New College Worcester. It is the specialist provision for children with Visual Impairment. It is excelent!
16th March we have a meeting with the LEA to look at how we can enable Joshua to reach his potential. I am really struggling with the concept of sending Joshua to a boarding school.
I would love to hear from other parents whose child has lost their vision in Secondary school. Joshua was learning visually until mid year 8, his vision then rapidly deteriorated from Partially sighted to Severely Sight Impaired. He does use his residual vision but needs font 24 + to access at all and struggles to keep that up for long. Yet he has had not training in tactile learning, and is struggling with much of his curriculum now. I have tonight done part of his Science test with him, reading it for him and scribing for graphs and diagrams. it is a skill he needs to be practicing daily yet there does not seem to be anyone available in school to do this with him. It is hard for me as Mum to read and scribe without prompting him to check, or offering suggestions....my tongue is sore from biting it!
Tomorrow we have to go collet an order from Sprigfeilds, drop Christina at trampoline club, Tesco shoping, collect Christina and get washing up to date so uniforms are ready to take with us on Monday. We are staying overnight on route home then heading back for shool Tuesday morning. Joshua has a mobility assessment at school with guide dogs at lunch time. I have a meeting with the Head and Senco at 2.15.
wednesday and Thursday are full of meetings and appointments, Thursday David has an appointment in Peterborough and Friday at long last Eve has a wheelchair assessment, great way to spend my birthday, negotiating with wheelcahiar services!
The higlight of this week has been getting to grips with hoisting Eve! I must post some pictures soon. Sorry they are all on my phone, I will try and do something about that soon!
All Prayer appreciated!
Tina
1 comment:
Hope all is well with you and your family.
Lisa B
Hampshire, UK
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