Missing in the depths of action!

Sorry, lots of people asking if all is well because I have not blogged in so long.

Well no all is not well and it is hard to know how much to blog as it is possibly very boring to most people.

Eve has been uwell, Rosie has been unwell, Rosie has decided she cannot multi task, ie sit up and breathe and the same time. This has meant she has been home for almost two weeks solid, with a brief visit to the hospital via ambulance from her school transport last Monday.

We are currently waiting to see if New Life Charity can help us to find a wheelchair she can travel in on her side and will accomodate all her equipment. We are also haveing to give thought to the prospect of a tracheostomy. It isnt a certainty nor is it imminent but it is taking a far lesser degree of unwellness before she is struggling to maintain a patent airway without a lot of extra effort.

Rosie is having much more frequent Tonic Clonic Seizures at the moment and each one seems to be longer and more complex than the one before. There are things in place to try to address this but we so far seem to have swapped Tonic Clonics for none convulsives, I am not convinced that these are a good swap.

I succumbed to an horrendous Chest infection at the beginning of last week, my GP wanted to put me in hospital but that really was a non starter, so mega doses of Antibiotics and inhalers have kept me going, just. I am now much better but still doing a fair impersonation of a Seal Barking on a regular basis.

I have also had an appointment with the Biological Departments Rheumatology Nurse about my treatment options for my Lupus and Rheumatoid Arthritis. I really am not convinced that the treatment options are the right way to go. I know I need my pain and swelling under control but not at the risk of other equally debilitating problems. I have deferred for now pending another meeting with my Rheumatologist who has so far refused to discuss this beyond, do you want me to try and make things better?

I have asked for a referal to a respiratologist but he is not keen to do that.

We are still in deep discussions/arguments with the LEA over Joshua's Statement. We had a meeting at his school with the SEN officer from County, the QTVI, her boss, Head teacher, SENCO, myself and a representative from the NBCS and our Minister. This became quite heated at one point over the need as we see it for a link with New College Worcester.

The discussions went on for a long time. Ourselves, the head teacher, the SENCO and the NBCS rep all stating vociferously that a link with NCW would be hugely helpful. The QTVI saying she was unsure that she could actually give an equivalent service with her visits, her manager saying the expertise was available in county and the SEN officer just making copious notes but saying very little.

They all went away to discuss this with various people in the LEA and we went off to prepare our case for tribunal.

I had understood that they were meeting at County to discuss this on the Friday 18th March. The Final Statement was due on 17th March but I acknowledged that it could not be issued until after that meeting so was expecting it Monday 21st.

Thursday 17th March was Jonathan's 21st birthday. It was a difficult time in some respects as Jonathan does not cope with lots of people, unexpected noise, parties etc. So how do we celebrate such a milestone. We decided it was Jonathan's day and making it a happy pleasant day for him was what mattered. Jonathan wanted Roast Turkey for dinner, Like Christmas!

So we planned a Christmas dinner, all the trimmings he liked, including Sprouts!

His carer came early in the afternoon to decorate his room, Balloons, Banners, sparkly trimmings and lots of little 21's spread over his surfaces. It looked beautiful, we really hoped he would like it. Jonathan does not spend much time in the lounge or kitchen so it was more appropriate to decorate his room and put his cards and presents on display in there.

Jonathan enjoyed his birthday, he loved his room and just asked for the 21's to be moved from his computer table. He loved the meal and his cake and the indoor fireworks. It was a lovely evening with him.

During the late morning the phone rang, it was the Sensory Impaired Service Manager. She was asking if she could come to talk with us about the issues that were brought up at the meeting that were not addressed properly. I assured her that I was happy for her to come but I was not prepared to enter into my arguments in that situation. I was happy to listen to what she had to say but not to enter into confrontation. We agreed a time for Wednesday 30th March.

The Final Statement should arrive Monday 21st, It didn't! Instead on Tuesday I got an email from the SEN Officer to say she had been given an early spot in the Joint Agency planning meeting to request funding for New College Worcester. This would be the 25th March. I was frustrated but felt I could not really do anything. It did sound as though she was going to the meeting to request funding rather than to give reasons why it shouldn't be funded! All I could do was wait for the decision and hopefully the Final Statement so we could start to formulate our Tribunal Case.

I also rang through to speak to the Head of SEN to request to attend the meeting on Friday. She did not feel there would be a problem and would get back to me.

So Wednesday 30th dawned. I still had not received the final statement, nor had I had a reply to my request to attend the meeting. So I emailed the Head of Children's services direct, reminding them I had a terminally ill child at home and needed time to arrange care if I was to attend.

The SIS manager and senior teacher arrived promptly at 12,30. I once again reiterated that I was not prepared to voice my concerns and views but was wanting to just listen to what they had to say and only comment where I felt a need. The manager accepted that and went on to introduce the senior teacher and to tell me that the existing QTVI had tendered her resignation after the meeting on 16th March. This senior teacher was going to be taking over and taking part in some joint sessions with the existing QTVI prior to her leaving at the end of May.

They talked about their plans and the Senior teacher showed me a file of various adaptations and at the end I did express my concern that for the last 3 years their service had not facilitated the school to meet Joshua's needs, how could I begin to believe that suddenly that was going to change for the better enough to allow Joshua to reach his potential? We still strongly feel that he only way Joshua is going to achieve in his GCSE's is to have the ongoing support and time at NCW.

Fast forward to 6.10pm tonight. I receive an email from the head of SEN.

It is felt inappropriate for you to attend the meeting on Friday, as the aim of the meeting is for the SIS manager to present your views from today's meeting at your home!

So tell me am I being too suspicious here?

At no point has anyone told me that there was a connection between the two meetings, the SIS manager had at no point told me she needed my views. The meeting with SIS manager had been set up before the JAP had turned down the funding and the Meeting with head of service and head of SEN was supposedly et up because the JAP had turned down the funding.

Jonathan enjoyed his birthday, he loved his room and just asked for the 21's to be moved from his computer table. He loved the meal and his cake and the indoor fireworks. It was a lovely evening with him.

Friday, the day we had expected the Education team to be discussing Jonathan, Eve became very breathless and blue just before her school bus arrived. Deciding fairly rapidly against sending her to school, despite being dressed as the princess and the pea for Book Character day, I was quite concerned when we could not get her SATs to stay above 84%