All in all the plans have come off and we feel we have made some progress in some areas. In other areas we have agreement from professionals that the things they should have done have not been done, and that things have gone wrong and they have failed. OK so we haven't got corrective things in place yet and there are areas where apologies and acknowledgement of failure are not enough, but so far no one is disagreeing with that.
This last week has been a mixture of business and relaxation. Achievement and frustration.
On Monday Joshua met his potential Guide Dog. Norris! They got on well and the Guide Dog Trainer was going back to recommend a match. We are now waiting with baited breath to know when the training will start.
Tuesday I had a hastily rearranged appointment with the cardio-respiratory department for lung function tests. By the end of the two hour appointment I had a better understanding of how tiring Eve finds breathing! I dont think I did very well, Apparantly the tests after I had had some inhaler were significantly better. In fact they were so much better that within haf an hour of me getting home I had a phone call saying they had contacted my GP to organise an inhaler for me! I have my appointment back with the consultant on Friday so we will see what they come up with from there.
Wednesday I had to take Jonathan, Rosie and Eve to Grimsby to the hospice. Bethan came home to come with me, it was a great opportunity for her and I to spend some time together we have not had the opportunity for that for quite a while. We collected Jonathan and then went to the fish and chip shop for some lunch, delicious, it was all freshly cooked to order so was really hot and fresh. We drove on to collect Rosie and Eve and then ate our lunch in the layby. Then on the way to the Hospice. Rosie was so excited as soon as we pulled into the road. She knew exactly where we were.
I had spent hours preparing written care plans for all the children and had emailed them to the hospice prior to our admission. Yet the nurse booking us in still spent an hour going through the medication and the consent forms. Much of it was unnecessary and eventually I got up and said it is all in the plans and we are going now. Thankfully she was happy for us to go and no further deliberating. I have since expressed my concern over this with our liason.
So Bethan and I headed home, stopping just over half way to have something else to eat and then home. It was good to have that undisturbed time together. Not for any deep and meaningful conversations but to have the companionship of good friends.
Thursday morning David Joshua and I had to be up and ready bright and early as we were heading off to Worcester for Joshua's assessment at New College Worcester. Christina was staying with Iris, Iris always arrives at 6.45 each morning. This morning though the phone rand just after half past six. There had been an accident on the A 17 between Iris and us and the traffic was being diverted round the back roads. It was therefore turned 7 before Iris arrived. We were ready to jump in the car and go. A quick thank you and check on some important bits and we were off. Not long onto our journey we heard about backlogs on the roads we were heading too. A lorry overturned and a shed load, causing long tailbacks on the M1 and M6 in our direction. Thankfully Tom Tom was able to direct us the scenic route and we were soon making good progress. It was however 10.30 before we arrived, whereas we were hoping to arrive between 9 and half past.
Joshua was soon heading off with the teacher and we were settling into the parents flat. A welcome cup of tea and a relax. Then we headed off to Worcester for lunch, maybe a wander and then we found a hairdressers and both stopped to have our haircut! Such a welcome relax and wind down. A lovely hairdresser really sounding interested in the children and things we were telling him. He knew about NCW which was good as it gave us something in common to start with. Both happy with our new look we headed back to the car and then back to school and our accommodation. On the way back to the car we passed a market where a van was selling fresh meat, we bought some steak for tea and in the shopping mall bought some potatoes before finally getting back into the car.
David went to rest on the bed whilst I say and watched TV. Then we had our meal before both heading to bed before 10pm. we slept peacefully, although I still woke at 3am, I was so wide awake by the time I got over my panic of not hearing Eve's machinery, I decided to have a cup of tea before trying to go back to sleep. This worked and I managed to sleep again then until 6.
Once we were both up and sorted we wandered over to the school to hand our keys in and check that all was OK. The receptionist told us that Joshua had made a good impression on everyone. We headed back towards the door and the Deputy Head was coming up the corridor, he stopped to chat a while and then the SENCO came along and wanted to tell us how things were so far. We headed into her office and she was enthusing about how well Joshua had settled in. The other children were really taken with him and he was dragged off from his rest period to join them in the celebration assembly, He had been playing on the PS3 with a lad most of the evening, and the staff were all impressed with how he was so intense on listning and responding to what they were asking of him. He apparantly had a double session of braille and made great progress. So all was going well. There was one odd happening though. We have not hidden this assessment from the LEA, indeed I have spoken to both the VI teacher and the Special Needs Officer at the council, yet someone from the LEA has rung NCW to try to find out what the purpose of the assessment is and what was being asked of NCW. Very odd...why didnt they ask me before?
So we went out to discover the delights of Hanbury Hall, National Trust. Only when we got there it was closed on Fridays! Thankfully they had a list of other nearby properties that were open on Friday and we decided on Croughton Court. It was delightful. We spent the remainder of the morning there until about 1.30 and then we headed back towards school where we had spotted a two eat for £8, restaurant which sounded good. It was extremely good!
All too soon we were back at school waiting for Joshua to come out. He seemed to have enjoyed the time but was very tired.
It was 8pm before we arrived home tired but feeling we had achieved much, quality time together as well as knowing we were making the right decisions for Joshua.
It will be 10 days before we receive the full report, but hopefully the time between we can pass in some of the information gathered and the two schools are already making moves towards sharing information and Joshua;s school is gaining expertise.
Saturday Morning we were off out again to meet the coach from British Blind Sports Archery division. He had come a long way to spend the day working with Joshua. We met him at the Pub near the hospital and then took him over to the Club Field.
It was a useful 4 hours, he gave Joshua a lot to think about. Some of the tips made an obvious immediate difference others are going to take a lot of practice and perseverance. One thing he did show us was a lube tube...a little pot that you can push the arrows into to lubricate them to make them easier to remove from the Boss. Previously being advised to use a silicone shoe polish pad this was a great move forwards!
Joshua felt the session was really beneficial, things that he had never realised he was doing wrong, put right and a dramatic visible improvement to his grouping!
By 2 pm Christina and I were ready to move on and spend some mother and daughter time together. This inevitably meant a trip to Oldrids for a drink and a bite to eat. Then a look in a few nearby shops, spending in the charity shop and making a move towards home.
I am so glad Christina thinks cooking dinner is fun, I am exhausted and really have done very little, I am glad I can sit and relax now until the morning, Off to Grimsby to collect the other three. Having Promised Joshua and Christina a day in Cleethorpes before we have to fetch them.
Sorry I think this is a fairly boring Blog. Just an offload of the last few days. The upcoming week holds appointments everyday. Then the weekend is looking blank....blank is good!
Just one thought to end on.....a very dear family has today lost a "father, Grandfather, Father in law"....please hold them in your prayers.
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