It's been another week!

Monday Morning dawned with a possible visit from a Nurse, Of course because I was organised and had even swept the floor, (because I had a friend coming later not because the nurse might be), She rang to say could she come next Monday instead! OK not a problem.

My Friend had texted earlier to ask if I had half an hour spare for her to deliver a hug in person instead of over cyber space! Of course, I didnt have to leave the house till 12 so I swept the floor and decided Sue would accept the rest. I sat to catch up on Computer stuff and enjoyed the solitude for a while. Soon there was a tap at the door and I opened it to find not One friend but two! Bethan had come home for a day or so as she was homeless in London, the estate agent/landlord of her new studen flat were being awkward and she did not yet have a moving in date. We had a group hug! Much needed and long overdue!

We were able to sit and chat about nothing and enjoy a cup of tea and sit and chatter some more! David came home and we sat and nattered a little while longer but then it was time for them to leave and me to get ready to head out for Jonathan and the appointment with the Psychaiatrist.

David had been held up for far too long at Kwik Fit getting new tyres on the Motability Vehicle, These things are not straight forward and there was some tooing and froing on the phone with Motability before the agreement was reached and the deed done! So Because there was too much still to achive before starting the school run at 2.45 I went alone and Jonathan's One to One from College came with me with their notes and evidence and oppinions to share with the Dr. So we arrived at the Clinic just about on time. Jonathan was happy and ready to see a new Doctor with no signs of anxiety. His anxiety seems to be towards noise, crowds and unexpected loud noise, a new environment with a new Doctor seemed to hold no fear.

We had the opportunity to describe Jonathan's episodes in fine detail, the Doctor took details of Jonathan's birth and a history of his early life. he asked me how I was when pregnant with Jonathan, his face was a picture when I said I had never been pregnant with Jonathan! he quickly grqasped the adoption and accepted that we knew little about Jonathan's birth family. We were able to then talk through his medical history from coming to us at 6 months old until now. There was plenty to tell.

There are some episodes with Jonathan where there is a deffinite trigger, or a deffinite build up of anxiety before hand. Others come totally out of the blue and are an instant flick from happy chatty involved to a ball of aggression and totally out of control. Then always there is a flick back to placid, afraid, distressed and disorientated, slowly growing back to his normal self.

Dr S was sure that he anxiety was a result of the happenings and had escalated to now also be a cause, however he felt as we do that the episodes that occur with no precipitant are caused by some physical cause!

Jonathan had been started on an anti anxiety medication as he was discharged from hospital and his anxiety was deffinitely less. So Dr S decided that it would be worth increasing that in the hope we could leesen the anxiety further. He was keen to see what the Cardiologist thought later in the week. The non precipitated events could well be due to a cardiac cause.

We left with the intention of another appointment in around 2 months.

Jonathan went back to college with his carer and I went on home to relate to David.

Tuesday morning David and i were heading out to Ikea making an important purchase for the house. We dropped the children at school, Jonathan at college and headed off to Nottingham. Leaving Jonathan at 9.15 we should be at ikea by 11 or soon after, giving us 3 hours before we needed to leave. Plenty of time in the midweek surely!
The department we wanted was busy, the advisors were all busy, they helped us to start setting out what we wanted and came back to give advice when we needed and then told us the next bit would take about an hour! They gave us vouchers for a free meal and we went off to the restaurant. We returned 3/4 of an hour later to find them hard at work on our order. Telling us just a few minutes just need to check with soimeone just need to alter this , then I realised they had made a mistake with a measurement and that bit had to be done again. Eve decided to make things interesting by dropping her sats and producing gallons of secretions to suction. I ended up with her led upside down on my lap to drain her out. Oxygen up to 2 litres and still not looking great! Thankfully I knew I had her Ventolator in the bus we just needed to get out of here and on the way. Eventually everything was sorted and we headed for the tills......Why is Ikea such a long route round! It took us a while to find the tills the queues were long and then when we put in our card to pay they had to ring the bank to authorise the payment.
We needed to be in the bus to go at 2 pm to get bac for the children! It was now 3.15 as we pulled out of the car park! We called College and were assured there was no problem, the manager was there till gone 5 anyway and Jonathan would be fine! I do love Jonathan;s college they could not possibly do anymore for Jonathan they are wonderful!
Joshua and Christina were doing Gym after school and finished at 4.45. There was no way we would get to Jonathan and then to them by that time. I tried ringing the sports hall but no answer. I decided to leave it a while and try again but then I thought about our carer! Already having made an emergency trip to Rosie with a spare tube after hers broke in the morning. Debbie agreed to go collect Joshua and Christina which would give her time to be home for Rosie coming after, after school club and usually arriving home at 5.45.
We got back to Jonathan at 4.45....having met every red light, had every bus on route pull out in front of us and ever tractor be going in our direction! Jonathan had had a great time looking after his manager, he had just made him a cup of tea as we arrived!
We were half way home from College when carer sent a text to let us know they were all home waiting for ROSIE!

We managed to get home in time to have a cup of tea before Rosie arrived home and the evening went on smoothly!

Wednesday morning dawned looking frustrating. An appointment that meant picking a child up from school and traveling 12 miles to and from hospital for an appointment that probably wouldnt help much. Just after David left fro the school run the phone rang canceling the appointment....a welcome appointment free day and all I wanted to do was sit and read and write on the computer....I managed to do just that till David got home at 10am.
There were things to do in town, I headed out to put cheques in the bank, buy meat in the butchers and post letters and a parcel at the post office. Called in at clinic to collect some medical supplies for Eve and pop into the chippy for chips for lunch!
The job David is doing right now was involving some drilling into the masonary, and so to try and get that done before Joanthan arrived home I went on the reverse school run. So much for a quiet day!
Thursday morning we had to take the car in for MOT, Children to school, Jonathan to the hospital for Cardiology and then David wanted to go to Wickes for plasterboard. He was hoping to be back at the hospital before the main cardiologist called us in. We had to go get his device read first and so we booked in, went to clinic and explained about his reveal device and they took us round to the Cardio respiratory department. It took a little persuading to get them to read it as it hadnt been in the statutory 1 month. Thankfully when I explained the reason for its insertion and the fact he has had some events during the time it was in they agreed to read it.

Unfortunately though there was no evidence of a cardiac event at the time of his episodes. The technician was quite excited! "Oh his heart has been behaving itself so thats good news"!
No it wasnt good news, it was the worst possible news, This meant that the cardiac condition we knew about and were attempting to treat was not the cause of this new problem, this could only mean that there was yet another cause to be found, Jonathan has another condition and in order to treat it we have to first find it! I was devastated! We returned to the Clinic to sit and wait! Jonathan was weighed, they did an ECG and we sat and we waited. David returned and we sat and waited!
1 hour 15 minutes after the appointment time we were eventually called in. It was a distressing appoinment and one that left us reeling with this fact, the heart did not change during his epsiodes ove rthe last two weeks. This therefore leaves us with no known cause and the prospect of starting our search again! I became really upset during the appointment, I just want some answers, I want to know what is causing this dramatic change in my boy, I just want our old Jonathan back!
Dr N was very sympathetic, but was unable to give us any idea as to what may be the cause. Our next port of call is the neurologist. His appointment is the end of November.
We took Joanthan back to college and decided to treat ourselves to a lunch at the pub opposite College...2 meals for tenner! bargain! We arrived home with hald an hour before David had to head off again. Thursday night is archery night and so they came in, got changed and headed out again. Leaving me and the carer with Rosie Jonathan and Eve! It turned into a late night as they went back to one of the Club elders homes to get their bows lined up with a lazer! Very nifty piece of equipment by all accounts. It was therefore turned 10 by the time they got home and a very tired Christina crawled up to bed.
Andso Friday dawned. The car needed fetching from the MOT garage, Thankfully it was only minor fails and cost less than £100 to collect. Also the garage is on the way to school so I dropped David off and continued to drop Christina at school. It was a slightly subdued Christina who got out of the car, wearing school Uniform on a non uniform day! Apparantly she had lost her Red Card, the card that teachers sign for misdemeanours and uniform breaches! Christina maintains it was taken from her pocket during PE, these things do happen but she was punished for having lost it by having to wear her uniform! I was a bit cross about it but talked to Christina about the need for discipline and how some children with lots of signatures would "lose" their cards!She agreed and went off with a smile.
We sat in the car in the car park for a while, watching the kids arrive and run as the bell went. Three teachers stand outside school monitoring the late comers and takeing names. When the last pupil walked through the gates the three staff did not turn and come back into school....no they scuttled off round the corner....I was suspicious! I was angry about Christina's misjustice, and frustrated by everything else in our lives. I started the engine and followed them and there, round the corner were three teachers, Care and Guidance team, smoking away! Goodness was I angry! Marking down names of children late for school then instead of heading back into school to continue their working day they sneak off for a quiet cigarette! Not in a break time but in working hours! I turned around and headed back to school! I wanted to talk to the head, unfortunately he wasnt in! Whilst I was waiting for someone to talk to the three came in and the manager of Care and Guidance asked me if I was OK....I was so angry I just blurted out I was totally shocked at what I had just witnessed...."Oh what has happened?" I told her how I felt her and her coleagues actions were double standards I related Christina's situation forced to come into school in uniform standing out as a "naughty" child because someone had stolen her card and there were teachers stealking time from school, three of them together blatantly wasting school time smoking! Coming in to breathe their toxins over the pupils!
She tried to justify their actions, We are allowed to smoke in our breaks, we have breaks and lunch time we can do what we like! I said but it wasnt a break, you were out there to record late comers and rather than then coming in you all scuttled off round the corner to have your smoke before coming in to school. You stink of smoke and are going to be teaching in that state! It is not acceptable. She asked if I would like to talk with the Deputy head,in the absence of the Head Teacher. By this time I needed to get off as Jonathan needed to be in college and Joshua had a hospital appointment!
Joshua's Hospital appointemnt was with the Orthoptist and QTVI. We were talking about how to ensure that Joshua was given an accessible education. Since September both the QTVI and myself had individually gone into school asking them to realise how difficult things were for Joshua with his deteriorating vision. He can no longer comfortably read print, even enlarged font is difficult, he cannot see th eboards at all. he cannot read his own hand writing. So most tasks are having to be adapted for him. He has his new equipment, but this does not turn him into a sighted learner! He needs the work presented to him in an accessible fashion alongside his peers. Yet they are expecting him to use his camera and adapt the work as everyone else is starting to do it! This means he is constantly playing catch up. Often the work needs to be captured by camera, exported into word and then adapted into a document he can type onto. The teachers do not seem to realise how much time and effort this takes and seem oblviious to the fact that Joshua is falling behind due to the extra work involved in all of this. We keep telling them that they need to ensure his work is on the computer, or at least on a Pen Drive ready to install and use immediately, prior to the lesson. We are now almost at half term and this is still not happening. The QTVI has been asking for a date to come in and do some training with the whole group of teachers involved with Joshua, the SENCO is just not getting this organised. We both feel very much like we are banging our heads on brick walls!
So the plan is to approach the Head together to ensure School realise we are working together in Joshua's best interest! E is going to bring the fact that they are in breach of the DDA into her talk with SENCO on Thursday next week and hopefully we can ensure that the Teaching staff beging to work with Joshua to enable him to achieve his potential!
As I took Joshua back to school he was telling me he had two periods that should be PE and he was meeting with the SENCO to do some Computer work and organise other things!
The Deputy head met me as I was signing Joshua back in and told me that the Care and Guidance manager had told her of my concerns this morning! She said she agreed with me that there was a poor example situation but that they could not stop Staff going off site to have a cigarette in their break! I again reiterated that this was not a break, this was after signing children in late they were disappearing round the corner for a cigarette before returning to school This was in the school day and represented a huge double standard issue that was just not acceptable! She then agreed and said that she would take it to the Head and ask they had a deffinite code of practive of acceptable and unacceptable conduct of staff and how they are percieved in the public eye! (I wanted to say I was more concerned about the Pupil's eyes than Joe Public but I desisted! I did say that my first instinct was to take a photo blow it up and paste it to the side of the Bus with a caption of, KMS School Care and Guidance team! She said she was glad I chose to come in and talk instead!
So it was almost 12 midday by the time I got home and time for lunch! A sit down and unwind a little before the weekend started!

it wasnt long before the phone started ringing, a call from someone wanting to know how the boys got on, another making an appointment for next week, and then school! The SENCO, asking me to have words with Joshua when he came home as she had arranged to see him 3rd and 4th lesson and he didnt turn up. I found this really puzzling as I had left him heading off to find her! I asked her if she had seen him since, No! Has anyone else seen him since? I dont kow I emailed staff asking if they saw him to send him to me but noone has!
I was getting worried, many scenarios running through my head, was he really upset after this mornings appointment? Had he fallen somewhere? he has had episodes of low blood sugar recently had he collapsed somewehere? I muttered these possibilities and asked she try to find out if he had been at afternoon registration or turned up in last lesson. I then decided to go to the school and find out for myself so agreed David would go for Jonathan , I would collect Joshua and Christina and hopefully resolve whatever had happened there and be back to meet the bus with the Carer.
Half way to school my phone went off with a text! I pulled over to check it only to discover a message from the carer saying she was not going to make it! ARGHHHH this meant I had to be sure I was back for the bus. So I headed back off and arrived at school 5 minutes before they should be out. Joshua came out first and I pounced on him! Where were you what happened why did you not let Miss K know? I was so cross with him. We spent all morning trying to find ways of ensuring the staff gave him the help he needs and the one time someone had made time to work with him he changed his mind and did PE that he had pleaded to get out of!

Home and time to organise rabbit Cage cleaning before Rosie and Eve arrived! Christina agreed to watch Rosie and the evening went smoothly! Dinner got cooked and Rosie got bathed and everyone was happy! Life returns to normal! Monday is another week!