2013
New Year 2013
Ruben has a great Christmas and enjoyed his break from school. Wish I could say he is looking forward to going back to school! Ruben is going through a stage where he does not want to go to school. We will need to explain that this is not an option and having to explain the consequences of not going to school and hope that this eventually gets through.
February 2013
Moorefield's hospital Ruben was quite excited about going to London to his appointment he was looking forward to going in the lifts! Prior to our journey we had to give Ruben a commentary on which route we were taking which he seemed very interested in. However on route there was road works and we decided to take a de tour to avoid this and continue at a speed on our way. However once we explained to Ruben we had come off route he was very distressed and got very upset. He could not understand why we had told him one thing and then completely changed the plans. Ruben asked if we were joking and almost seemed that if we would of said yes we are he would of quite easy calmed down, however I thought that he needed to know the truth and have to deal with this which to be fair was quite difficult as it is not nice knowing he is so upset but at the same time we want Ruben to be able to deal with change unexpectedly. We discussed this further with Alison salt whom is the consultant down at Moorefields, we also explained that a the QVTI at Rubens school had referred him to the communication team as she had concerns with his behaviour and social skills and informed her that they was due to return once Ruben had settled into reception which had not happened to date. We were asked our thought and we again felt that it was very difficult to know whether these behaviours were due to the visual loss. We asked for Ruben to be referred to Great Ormand Street as they have a specialist devoplmental team that can assess children with VI or whom are blind. We were told that we may have to wait a few months but feel this is a positive move and look forward to having some answers. Personally we as parents still feel that a lot of Rubens behaviours are due to the visual loss and the fact that he is so young he is still so immature to understand.
March- Ruben’s school assembly.
I was a little apprehensive about how Rubens was going to behave as he had been quite disruptive throughout some assemblies so this was going to go one way or another! I was delighted with how patient Ruben sat through this play and it was a delight to watch him get excited about his role which he had to speak into a mike and say a few lines. What was so lovely was Ruben knowing I was in the room as he could smell me! I always wear the same perfume which is quite strong and Ruben is always able to know when I am around which is important as the other children see their parents entering the room and are able to get excited and it is sometimes really difficult when you can see Ruben asking the teacher I am there so this works so well for us.
April Ruben helps mom with her Braille!
I managed to get a volunteer through the RNIB to support me to learn some basic Braille. I was delighted as I have been after this for years. My Teacher is really friendly and very good at Teaching. Ruben has really enjoyed helping me and it has been a great way of encouraging Ruben to practice and do some homework himself. Ruben likes to pretend he is the teacher and I have to say he is doing so well with his reading and writing we are so very proud of him.
May – Wales
We went for a long week end in Wales where we stayed in a caravan, Ruben really enjoyed this. We were lucky enouugh to get dry warm weather so visited quite a few beaches where both Ruben and Theo enjoyed paddling and making sand castles. Ruben enjoyed the bungee trampoline and the go carts as well as pony riding. Overall we had a lovely weekend.
June - Burnham on sea
Again we were very fortunate to be invited to a weekend away with Theo,s football team. Ruben really enjoyed this as he knew a lot of Theo,s friends and enjoyed spending time with them around him. The weather was fantastic so we enjoyed the outdoor pool, the fair at Bream, the market, beach and club of the evening. Theo was off playing football with his friends most the weekend so he really enjoyed himself. Again we had a very eventful and exciting weekend.
July - Review at school
July Review at school we were given half hour to plan for Rubens following year in school! The meeting was a shambles to say the least... we had a few issues that we were hoping to resolve which in our opinion were totally dismissed and the response was totally appauling...without going into to much detail a further letter was sent to the head mistress whom is aware of our thoughts and feelings. We have since referred Ruben to an Occupational Therapist.
July – Birmingham Canal Trip
Ruben has been asking for a while to go on a long canal boat and so we all went up to Brinley place in Birmingham. We had lunch on the canal side which was really nice and enjoyed a tour around the canals of Birmingham. Ruben was hoping to hear & feel more than he did, but overall he enjoyed the experience. Probably prefer a speed boat!! More feedback for him...
August-Holiday in Turkey (marmaris)
Ruben was totally excited and on a count down to our holidays, as usual! We stayed at a place called Club excelsior which was very nice lot,s of day and evening entertainment good kids club and a nice pool for all ages. Ruben and Theo struggled for the first part of the holiday trying to adjust to the immense heat which was reaching over 100 most days! However once we got familiar with the surroundings we ventured out and used the local water Taxi’s to visit lot,s of places such as Icemeler which was a very nice day out, we also went to a place called Trunch where we went around the local market, and ended up spending the day relaxing on the beach. We also went on a few boat trips which were great fun where we stopped off for swims in the sea and visited some lovely beaches. We had lunch and relaxed on top deck taking in the beautiful sun on the big boats, whilst being entertained by the staff on board. We met some friends called Helen and Mark, Ruben really enjoyed Helens Company and we managed to meet up for a nice meal out and few cocktails before our holiday ended. We have a great holiday in Turkey and will definitely be looking at going back very soon :)
September-
Ruben returns back to school year 1. Ruben was very excited about returning back to school but at the same time I know he was very nervous. Theo was our main focus as he was going into senior’s school year 7 so we all including Ruben was wishing Theo the best of luck on his new big school! Ruben also had a lot of change, New Teacher, new class, new TA and a new Taxi driver! So massive changes for him also. Ruben has struggled to settle in and at the moment has not wanted to go to school, just says it is boring! I think he is now realising that school is not for playing it is actually about learning Lol and he is just not impressed :( having to really encourage Ruben to get out of bed it’s a bit of a nightmare at the moment, fingers crossed he will settle down.
October ;
Ruben continues to not want to go to school and is not settling as well as we had hoped. Having been to parents evening we were shocked to find out that Ruben is having a lot of behavioural problems which is impeding on his learning and we were saddened to hear that if he did not comply with the rules, that mainstream may not be an option! We were mortified! Not a very happy parents evening to attend L Ruben is happy in himself at home and the behaviours he is displaying are based around having to go to school. It seems such a shame that Ruben has gone from really enjoying school to now really not liking school. We know that Ruben has struggled with the changes which have in our opinion been to much too soon, as he ahs new class teacher, new Teaching assistant and a new QVTI, the transition process did not support Ruben as he was not able to familiarise himself with all the changes due to him being off sick with chicken pox!
October- Holiday to Olu denez Turkey
Having had such a nice holiday in Turkey in August we were fortunate to return back to Turkey and visit Olu denez. Theo went away camping with his friend and family Lisa, Cain & Sean . Although Ruben was sad that his big bro was not joining us he couldn’t wait to return back t turkey and again looked forward to the flight more than the holiday! J Ruben again enjoyed the flight and on arrival inspected his nes surroundings which he was happy with and settled for the evening, The next day we got to familiarise ourselves with the hotel which was beautifully set amongst the mountains where paragliders were setting off over the hills, very tranquil place. Whilst spending the week we spent alot of time around the blue lagoon which was like paradise the waters were crystal clear with fish swimming beneath you and shallow waters that Ruben could walk out and be safe and enjoy time playing for hours in t he sea. We also took the dolmus up the mountain to the next village called hissaronni which was the lively resort where the bars and discos were mainly located. We done our shopping amongst the shops where we bought presents for Theo and Nan & Grandad Graham.
November 2013
Things are not going well for Ruben in school it seems to be going from bad to worse, Ruben just does not want to go school literally in rears most mornings and then having being told he is being restrained which is devastating to hear, it is time to involve external professionals to get to the bottom of the problem.
I have spoken to Great Ormand street whom are keen to visit Ruben in school and observe him.
We have requested education psychologist, an occupational therapist and a referral has been made to an organisation that support families and children with emotional problems/ behavioural.
It is becoming more apparent that the school are no longer able t meet Rubens needs and having had several reports form GOSH and other professionals it seems that Ruben has sensory processing needs that need to be addressed and this may not be possible in a mainstream school, Ruben needs to have regular breaks and at the same time it has also been recognised that academically Ruben is two years above his age and therefore finds work to easy which leads to him being bored and frustrated. This all contributes to his negative behaviours along with the fact that Ruben is aware that he is different to his peers and is finding this challenging.
December 2013
Ruben was very happy to break for Christmas and to get him in the festive mood we bought a new Christmas tree which was musical and produced snow falling which went down a treat! The only thing Ruben wanted for Christmas was a battery operated car that he would be able to drive himself!! God only knows where he got this idea from but was adamant that this was all he wanted Father Christmas to bring him.,,,
Christmas 2013
The big day come and Ruben woke early to trail downstairs to discover that all his dreams had came true and having found his car he then decided to give it a whirl around the living room! The car was perfect and had all the luxuries of a real car, such as horn, indicators, radio, accelerator and breaks!! Rube was one happy chappy, the bonus was that the car was also parental control and therefore in times of need we were able to take over, thankfully. However Ruben was very good listening and taking instructions and directions for safe travel J. Ruben was happy to help his brother Theo find and unwrap his