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20th January 2009-Happy New Year Ruben!


Well the festive season is over and the New Year begins! Ruben had lots of wonderful Christmas presents however enjoyed playing with the wrapping paper instead!!Typical, he just loves the different textures and the noises the paper makes.Unfortunetley Ruben was poorly with Bronchilitious all over Christmas and the New Year so it was a very quiet and chilled out time for us all. After the year we have had I am happy to see the New Year in! Ruben had 3 month review and all goals achieved on his individual education plan. Ruben is now mimiking more words and continues to cruise around. He is also getting more confident at nursery and friends and family houses on getting around and exploring. Rubens new trick is when asked to stand still as long as he knows he has something or someone in front of him he will find his balance and raise his arms in the air with the biggest smile waiting to hear applause for his effort! It is so lovely to watch him do this it is such an achievement for him to feel so confident in himself. What a star you are Ruben! We are now working on meal times, Ruben is happy most the time to sit in high chair now we are introducing new spouted cups and letting him hold his own spoon. He understands totally what the spoon is used for but just needs to work on the co ordination process. Ruben continues to be happy most the time in nursery and continues to receive support from the SSS sue she is so good with Ruben and also Alison whom is starting to work with Ruben as Sue will retire this year unfortunately. Ruben has been referred to the educational psychologist and mobility team and we hope to visit special school for the blind. Still trying to push for more 1-1 hours for Ruben @ nursery but no joy as yet..


5thFebruary 2009 - Confidence


Fantastic news, following Rubens IEP meeting I have finally got the hrs one to one I had hoped for its amazing how a lot of persistence can go a long way! I also think Rubens VI teacher Sue pulled some strings and the nursery is very supportive. This is one step further for Rubens developmental stage as he is so confident at the moment on venturing into places within his own home and others. He is so curious and it is so good to watch him explore new surroundings in family and friends houses. Having more hrs in nursery will enable him to continue to explore without putting himself at risk.




8th February 2009 Teething probs!


Rubens cut his two bottom teeth , however has cut his fang teeth which is so funny to see they call it cross cutting!! Today I noticed that he has also cut one of his front top teeth, looks like they are all going to drop at once, bless him. He has suffered on and off for few months now so hopefully he is almost over the worse!


13th February 2009 Visit priestly smith special school.


Today Sue Ruben’s VI Teacher picked us up to take a look around Priestly Smith School. We were met by the head mistress that asked us about Ruben and then she happily took us around the School. Overall we were both very impressed. We were advice that this school does take on VI and blind children as well as other additional disabilities. This is something that we need to be mindful of as these children will be Rubens peers. We have another option and this is Worlds End School in Quinton which is mainstream with a resource base for the VI which sounds like a good option for Ruben I really hope we like this School otherwise it is any mainstream School with support, which I am not at all convinced that this is the best for Ruben. However I have asked Sue if she would be able to take us to a Mainstream school where there is a blind person with the support from the VI service so we can see how it works for ourselves and maybe meet the parents, speak to the Teachers children etc. This is a very stressful thing to think about however it is important that we make the right decision.




19th February 2009 Moor fields


Ruben had an appointment today at moor fields for a general check. We had Professors Moore’s assistance and she was ok however confused us a little. When she looked into Ruben’s eyes she told us that she felt he had some light perception as he reacted to the light she felt. I did tell her that proff more told us that he had not and also the ERG test proved that however she still felt that he had some light perception, which was very reassuring. She explained that our DNA results had not been sent off as yet as they need to wait to send a batch which she said was almost ready. She went on to talk and answer questions. I asked her if they found that the defective gene was the rpe 65 would Ruben be able to have gene therapy she said yes! Which contradicted prof moore again and I told her this she went on to say that Ruben could have retina transplant. I asked her what the procedure would be for this. She told us that they would have to grow a retina in a dish from Rubens stem cells and then plant them. When we asked how long this treatment would take to come to the UK she told us that it would be happening within the next five years. Both Rob and I were delighted on hearing this however I feel we need to not get to carried away as we have done in the past with the whole stem cell treatment! Alison whom works at moorfields was very happy with Rubens development overall. We will return back to moorfields in a year’s time.




22nd February 2009 concerned..


I have been so worried thinking about this whole School thing it is stressing me out. So I have been trying to talk to parents and have been in touch with the RNIB to see if they have any advise they said they have a lady whom would be happy to talk to me and that she has had the experience of going to both. I had this conversation with a lady named Andrea whom was a very nice friendly and honest person. I felt better for chatting with her however as I thought she advised that adhere are good and bad points about both and that it is our decision but not to beat ourselves up as we can always change if we feel we have not made the right choice. Basically she said that she loved mainstream until she got to 11 this is when she struggled with the work load and the whole social thing. She went into a special School which she loved, however when she left this School she found it such a struggle to fit into society as she had pretty much been constantly around VI and blind people for so long. She told me that it took hear while to build up her confidence to be able to get into the big wide world and socialise with sighted people. She felt that a school with a resource base sounded like a good option as it has the best of both, so hopefully we like this School and get a good feel for the place. I am hoping to visit this school soon.




8th March 2009- Rubens Development


Ruben is now 15 months old and is doing very well. Still attending Nursery he continues to build up relationships, confidence and trust. Ruben is happily getting around the lounge independently and has mapped out the whole room from each corner! Ruben is also happy to sit and amuse himself at Nursery and has stared wandering around there also .Ruben will stand unaided and requires applause from whoever is in the room!! He is very cheeky. He is mimicking everything you say and his speech is very clear. He is now able to say granddad perfect so he is very happy with himself and he can also string a few words together. Get down, and get up granddad! Along with a whole list of key words. Ruben is now learning to understand different parts of his body and is very quick on the intake. Ruben has also learnt how to move to different nursery rhymes "wind the bobbin up" he will roll his hands around, which is so cute!! Ruben has a very good understanding of what he can do get people’s attention. If there is something he does which makes someone laugh he will do it more and more to get more feedback. He is very confident and does love the attention!!


9th March 2009 - Cane


Today we introduced a cane to Ruben, he held it and was happy to for a while. I just want him to be as independent as possible so I feel the earlier he has this better for him. I will continue to offer this so he gets used of it.


13th March 2009 - Friday the 13th!!


What a terrible day for Ruben. I went to collect him from nursery and was informed that he had an accident, a bump to the chin. When I observed Ruben he looked fine and seemed ok in himself. I was informed that he had been sat in a chair at the table after lunch and he pushed the table in front of him of which his chair moved back and slipped forward. When I got to the car I then had the shock of my life to see that Rubens front two teeth of which he had not long cut had both been damaged!! One almost gone and the other were chipped! I was so furious that I ended up shouting and rushing off to get Ruben see by a dentist which was not the best time 4 on a Friday! The dentist told us that Ruben appeared not to have damaged tithe nerve however to keep an eye on him. I was so anger that this had happened I could not sleep thinking of why he had been left unattended in the chair in the first place. I spoke to Sur VI teacher whom was not to happy herself and agreed to meet me at the nursery to discuss this further with the manager. Poor Ruben must have been in agony and nobody had even noticed that his teeth had been damaged. I am so gutted and it has really knocked my confidence and trust of which I had built up over the last 6 months!! I can’t believe this happened as I really was so happy with the nursery and the officers that support Ruben; we will see what Monday brings...


16th March 2009 - Meeting


I received a phone call this morning from the nursery manager explaining that she had just been informed of Rubens accident and she apologised and asked if I would like to go in and talk about this I said I was coming in to see her anyhow. I went to the nursery and poured my heart out!!I think my anger had turned to pure emotions and I explained how the trust and confidence had been knocked out of me. We had a good lengthy meeting and it was quite clear that the nursery staff working that day was at fault and did not follow the correct procedures and this was addressed and again apologies were made! I was asked if I would bring back Ruben and what would make me happy and make me feel better if I should choose to bring him back. I requested that his Previous support worker comes back to work with him Dawn which was granted and that clear guidelines are in place of what is expected of the issey worker and there hours when working with Ruben. I agreed to bring Ruben back and go through the whole settling in period process! All was agreed and I felt better for getting to the bottom of this. It is just so sad that this had to happen this was totally avoidable should of Ruben not been left on his own!! Hope this has been a wake up!!


20th March 2009-VI reference group


Attended the VI reference group today with Bham city council it is the special support service whom Ruben is supported by weekly. This is a great opportunity to have an understanding of what is going on in Birmingham for VI children and also a good place to gain knowledge and meet parents too and professionals. I had a lovely surprise form the Vi service they had got me a Braille this is something I have been asking for for many months to Rubens teacher Sue and she kept telling me lack of funds however they managed to purchase one and loan it to me, so this is fabulous as know I can start to learn Braille!! Ruben has been going to nursery most of this week and has not appeared to be upset or anxious at all about his experience with his teeth. So thankfully this has made me feel so much better about leaving him. Dawn is so good with Ruben she just has such a lovely warm character about her and Ruben loves her!! I am happy that she is back.



27th March - Visit to School with resource base for the Visual Impaired



This is a mainstream school locally to where we are living and basically has a resource base which offers support and specialism to blind and VI children. When I first got to the school I thought straight away that it seemed crowded and quite hectic especially after looking at the special school at Priestly Smith. But as I started to see more and ask more questions I began to think that I actually quite like the whole ethos of this school. The children seemed very happy and the blind children looked well supported and were included in all the sessions which were adapted to meet their needs according to what level of understanding they were at. The atmosphere was really relaxed and it was a happy place for children to strive in. Both I and Rob were very happy with what we saw and we will visit again but feel that this is the right place for Ruben. We think he will fit in very well with the children at this school and he will have the right level of support. We are very happy with this outcome as it is also close to home.




17th April - Temper Tantrums! / Development


Ruben is certainly living up to the terrible twos he is showing his behaviour by head butting whatever he can include me! This is bothering me as he will really bang his head off the floor. He is doing this out of frustration as our can see he constantly needs your attention and is knowing that there is more out there now so wants to be on the move all the time. Ruben is walking more but does not like it much he tends to get very angry and upset but we have to keep on persevering as he is just getting too heavy and also reliant on being carried which will end up with him being quite lazy. Ruben’s speech and language is above his age he has a whole heap of words that he can pronounce very well and is also stringing sentences together. He is such a character he loves to be the centre of attention all the times and should he realise that he is making you laugh he will continue to do whatever it is that is making you laugh in the first place. Ruben very understands of what is being asked and will respond to most. Ruben has an assessment with a family centre this week so will be interesting to see what they have to say and if they are able to offer any advice or support. I am not holding my breath, seems like I am always hoping someone can tell me what I should or could be doing but this is never the case it is just a matter of procedures!




4th May 2009 Ruben meets Daniel Kish!


I was so excited to learn that Daniel was back in the UK on business delivering his flash sonar workshops to many cities including Birmingham! I was even happier when Daniel informed us that he would like to come and meet Ruben and Theo and we were delighted that Daniel accepted our offer to stay with us for the weekend. I was very excited however once I learned that Daniel was a vegan I got into such a state wandering how I was going to cater for his needs.Immedietly we were on the internet searching for dietry needs of a vegan! Well I managed to get in a few bits and bob from the supermarket and just hoped that would be ok. Daniel arrived on the Friday evening and met my Mom and Dad, Theo and Ruben. It was so good to see how Ruben warmed to him so quickly, and watching how Daniel approached Ruben was truly fascinating. Ruben does not warm to strangers very well and it usually takes a lot of time for him to approach anyone however he was so interested in Daniel and every time he found and touched Daniel he said very clearly "Daniel Kish" we all had to laugh. We talked for hours and enjoyed a Chinese takeaway which Daniel was very impressed with especially the Fritters!! We decided to take Daniel to Stratford as the weather was pretty good and enjoyed a walk along the river Daniel was very chilled and relaxed. Daniel advised us on how to encourage Ruben to walk more and tried to get Ruben to hold onto his cane as we walked, Ruben seemed to become very interested in his own cane however proffered to walk pushing the pushchair which Daniel was happy with him doing so. He advised us that it would be good if we could speed up the walking to get Ruben into a rhythm, this seemed to work quite well and it certainly tired Ruben out he slept nearly 13hrs that night!! We decided to take Daniel to our favourite Indian restaurant those evenings he had enjoyed the Chinese so much the night before. We talked about how Birmingham was famous for the Baltic dish and again Daniel was very impressed with his food. All the worrying I done about catering for Daniel and it just all went so well. Daniel was due to fly to Glasgow so we went for a walk with Ruben over our local park and Daniel again advised us around mobility and working on stimulating Rubens Auditory skills. Daniel tried again to work a little using the cane with Ruben, it was not the best of weather, so windy and it was clear that Ruben was slightly too young to be expecting anything from him. However the whole weekend was so interesting and enjoyable having Daniel around and Ruben certainly took a shine to him. We will keep in touch with Daniel and hope that in the near future we will meet up in the states and do more work with Ruben...


21stMay - Ruben passes his level 2 in


Swimming lessons!!


Today was a real achievement for Ruben after his 12 week swimming course he successfully passed his level 2! He has gained so much confidence in the water and loves the whole experience of actually going swimming; this is fantastic as we have our first holiday abroad with Ruben to Greece in few weeks so ii am sure Ruben will be constantly in the swimming pool!!I am a very proud Mom today of my little boy Ruben....


22nd May - Visit mainstream school with support from the SSS..


Today both I and Rob were taken to a mainstream school by Sue Ruben’s VI teacher. This was the final option of choosing a school for Ruben. This was a school in Acocks Green we met a little girl of 5 whom was totally blind. She seemed happy and was getting 1-1 from a classroom assistant whom was quite clearly fond of the little girl, and a teacher from the SSS was there supporting her. When i started asking questions to the VI teacher it seems that they share thier time visiting the school and giving advice and helping with resources. However this is only 3 times a week and for only an hour each time. Thereafter it is left to the classroom assistant, whom is learning on the job with things like Braille and guiding etc..Both I and Rob feel that this would not be the best option for Ruben as I feel there is quite a big gap when it comes to support and resources and experience. I like the idea of mainstream however would like to know that all the resources are in place and the specialism is there within the classroom. We feel that Ruben would benefit more from the mainstream with the resource base school. I will request a further visit to the school to make sure we are making the right decision.


26th May -Hospital general check up


Today we had an appointment at the children’s and this was such a waste of time really and very stressful for all especially Ruben. He was forced into having the eye drops administered by a student who was quite forceful which was not nice and after all the waiting around we did not even get to see Rubens consultant who I was annoyed about we saw his assistant! Who looked at Rubens eyes and told us nothing that we did not already know!! After this visit both Rob and I have decided that we are no longer going to Put Ruben through this pointless procedure unless it will have any benefit for Ruben as this is just checking for what I do not know as I don’t think we are going to see anything different! I have requested that Ruben has the ERG tests carried out after his 2nd Birthday in Birmingham. We will visit both the children’s and moor fields each once yearly from now onwards.




20th June 2009 - Rubens first holiday abroad!


This holiday was planned last year to Zante an island in Greece. Zoe, Roy, Marcus and Remi and baby Cade was joining us on this holiday. I was concerned that Ruben would not like the flight and would miss his own environment. I also thought that he would not be able to cope with the heat, food and all the different noises and smells. How wrong was I!! We had an early flight so I think this helped. Ruben sat on my lap when we were seated on the aircraft and as soon as the engine started he literally fell asleep on takeoff. However when Ruben woke up he did wander what was going on but did not really complain he was very relaxed and I did at times have a walk up and down the aisles reminding him that we were on the aeroplane. He also enjoyed the coach trip to the hotel and whilst we were on Holiday when we ventured out on many day trips out. The apartments were quite small, Theo and Ruben had their own room and Ruben had a cot in which he was comfortable with as he did sleep well every night. Ruben called the apartment his holiday home!! So when we were out until late and Ruben was tired he would say "holiday home" go into cot!! Ruben lived in the water whether this be in the pool or down on the beach in the sea. Ruben absolutely loved being in water every day. I believe that the sound of the waves and children laughing and playing in the water, the whole beach experience was srelaxing.Ruben was accepting the fact that he had to wear a hat everyday as it was hot and very sunny and also enjoyed the whole experience of having his cream applied. We also managed to get Ruben to relax and tolerate his pushchair a bit more which makes life easier for all as we don’t have to carry him so much now. The resort was family friendly therefore most bars or restaurants we visited had swings, slides etc so Ruben was kept occupied. We also met some friends whom were staying next door to us from Oxford. Their names were Jess&Ross and their two girls Gabriella and Thea, Ruben really took to the girls and was happy to have them around which was lovely to see him making new friends. Ruben was extremely happy also the fact that he had Baby Cade to look after! Marcus and Remi also built up a good relationship with Ruben. Theo spent most of his time off with the boys and in the water too he was having a great time. We managed to get around the island as Rob and Roy hired a car and we visited all the beaches and also went on a boat ride into the blue caves and to a beautiful spot called the ship wreck. Ruben was fine on the boat and was happy to touch the walls in the caves! We also went to the water park this was great for Ruben as he had showers and slides to keep him busy. Overall we had a fantastic holiday and although it is hard work at times with Ruben as he does tend to get more frustrated with age and also weighing two stone now this tends to have an impact on your back, But we would do it all over again..We enjoyed the company of Zoe Roy and the boys and have planned to go away again next year, which we will be planning very soon..


10th July 2009- Feedback from Children’s




A Teacher named Sarah from the assessment centre that Ruben had previously attended visited the nursery today and gave us feedback. Overall they said that Ruben was doing very well and had no major concerns. The obvious developments of a blind child were mentioned Re mobility. However they were very impressed with his communication skills and his speech and language which they said was over and above his age. They gave the Nursery a few ideas on encouraging Ruben to access books and where to get funding from and how to create tactile books. They were very impressed with Daniel Kish Assessment of Ruben which I was happy to know that Sarah had taken the time to read and she was very impressed and very interested in the recommendations that Daniel had suggested. Sarah went to meet Ruben again and was suppressed that he had come on more since she last met him. Ruben really took a shine to Sarah as she did have the right approach on the offset. She sang and was very gentle with her approach. Ruben really did take to her therefore when he heard Sarah’s voice he remembered straight away and was happy to cooperate with her. I asked Sarah if she would be able to support me with the referral I made to the occupational Therapy as I believe and Sarah agreed that the sooner Ruben can independently access railings up the path outside and inside this will minimise some of his frustrations.




15th July - General Update.


Ruben is making more progression with his mobility and is happy to walk a little further more and more. Ruben has taken a few steps on his own today whilst at Nanny and Grandad Graham,s. This was with a lot of encouragement from my Mom, but it is clear that he just not confident to let go and he is still a little unsteady on his feet. Rubens vocabulary expands by the day and his brain is like a sponge. He picks up rhymes so quick and can also count to 13 which I think is a great achievement for his age. It is very obvious that Ruben is approaching the terrible twos!! He is still head butting and has also learnt that he gets a response from pinching and now his new behaviour is biting. I am trying to manage this by removing Ruben to his own space and giving him no attention, however this can be difficult at times as he tends to head but the floor so I have to intervene. We have Rubens IEP meeting on Friday and also the Educational Physcologist will be attending to observe Ruben i believe. This is the start of the statement process which will enable Ruben to have the right level of support throughout his education. Ruben has settled back into his routine however he does keep asking for "holiday home". In fact that much that I thought it would be great if we could do it all over again when I break up in the School holidays. So we are off again to Costa Bravo in six weeks. The countdown begins!!


23rd July 2009 - Ruben walks alone!


Today Ruben gained enough confidence to take his first steps alone. He was visiting his Nanny Cath when he just went for it and was very proud of himself!


Back at home he was extremely happy to pace up and down in the living room accepting a round of applause from both Rob and myself. What a day to remember this is a real achievement for Ruben and I am very proud of our little boy he is such a joy to watch. We really need to encourage Ruben to protect his face by telling him to reach out his hands in front of him when he is walking. The next step will be teaching Ruben to use his cane...


10th August - Stem Cell Awareness day Manchester


We have been in touch with many families of children with visual impairments or Blind and follow quite a few blogs where some of these children are going out to china to get Stem Cell Treatment. One of these families are from Dublin and have a little girl named Dakota whom has recently been in the public eye through media and a documentary. Well we have made contact with her parents whom kindly invited us to this stem cell awareness day. We met lots of families most of their children had optic nerve hyploplasia. We did not meet anyone with Lebers. We met some of the reps that work for Beike Biotec and they did not have much information in regards to anyone receiving this treatment for lebers, however did say that they would speak to some of their consultants and feedback to us. We met a lot of families whom were fundraising for the funds to enable them to take their loved ones out for this treatment. There were a few people including Dakota whom shared their experiences and thought on stem cell treatment. We are still a little apprehensive about the whole thing however I am excited to think that it is working for some and feel happy for those that are seeing some differences in their children as Dakotas’s parents had. We met a few friends whom I would like to keep in touch with and are following some blogs of some of the children that are out there now. We still do not think that this treatment would be of use to Ruben as yet as there is no evidence that anyone with Leber,s has had this. However we will continue to research and stay positive.




2nd September- Holiday to Costa Bravo


We have just returned home from a week in Costa bravo, a place called pineda de mar. Ruben was absolutely fine on the flight, I believe he thought he was on the coach as he kept saying were on the coach now going to holiday home! this is something that he has remembered from our last holiday in which he enjoyed as he got to sit on our lap’s and enjoyed the whole up and down experience. I did constantly remind him that we were on the plane and I think by the time we were coming home he understood that we were up in the sky flying high!! We arrived late and were able to settle Ruben into his new home for that week. Ruben got frustrated as he was looking around for the fridge and it was clear that he thought he was back in the same holiday home. We had to reinforce that we were in Spain and that it is a different holiday. We stayed in an all inclusive hotel of which we were on the 2nd floor and therefore had to get the lift which Ruben became totally obsessed with. It was great that he did not fear them anymore as he used to get very shaky and cry when we were in a lift, he became the total opposite. We eventually had to sometime use the stairs as otherwise we could spend up to half an hour going up and down! Ruben was also excited about going swimming but again the pool was located on the roof top so it was all about the lifts again!! The pool was also very crammed with people and I did not feel that it was very comfortable for us to be able to relax so we did venture out to use other hotels and there facilities. This was great as we got to see quite a bit of the place, and the good thing about where we was is that the train station was on our doorstep so this was a nice experience for Ruben to travel around on the train. We were also quite fortunate as on the strip where we were staying was a massive fair, which kept us busy most nights. Ruben went on lots of rides some which I was a little worried about but he absolutely loved them, the faster the better for him. We did visit the beach on several occasions however Ruben did not like the feel of it as it was tiny pebbles and was not at all comfortable on your feet, Theo seemed to be coping better than all of us with it. Also the sea was far too rough and very deep so we were unable to take Ruben in the sea. I did try several times but Ruben could hear the waves and was not happy to come in so we did not push it, overall this was a nice holiday, hard work at times but worth it..


October 2009- Oxford


We were invited to stay with friends we met whilst on Holiday in Greece in Oxford. Ruben was very excited when we told him we were going to meet up with Jess&Ross,Thea& Gabriella. He remembered their names straight away. Ruben did get a little confused as he kept saying holiday home ! We spent the night and the following day in Oxford and Ruben was very settled and enjoyed being in their company. He took a real liking to one of their dogs named Myone. The dog was very chilled and Ruben was able to stroke and approach Myone without being knocked over or licked all over! We spent some time in the garden which was really nice as they have Chickens and cats and lots of wildlife nearby which Ruben enjoys. We also sat around the duck pond and watched Theo and the girls fishing and having fun playing in the pond. Ruben slept very well and overall had a very enjoyable weekend with the family.




15th October-NBCS Article on Ruben and Daniel Kish


Received a copy of the latest newsletter for the NBCS and it was great to see Ruben in there with Daniel Kish. There was a picture of them in the park where Daniel was guiding Ruben around the slide and also they had taken clips from this journal which was headed Days of hope and some of Trudie, s inspiring thoughts. Feel like we are famous now!


4th November 2009 -Statement Process


Having recently attending an IEP meeting for Ruben it was suggested by me and Sue Ruben’s VI Teacher agreed that we should begin the statement process. The educational Psychologist was happy to contribute and go ahead and that day we went through a document called a CRISP which forms part of the statement. All that know Ruben were welcomed to write reports and Daniel was happy to contribute which was very kind of him. We have now received the proposed statement of which we need to discuss further to understand the content but hopefully this will support Ruben throughout his education whilst in the nursery setting and for schooling. We attended the resource base School today and were greeted by the VI Teacher. She was very informative and helpful and was very experienced around working with Blind children. We had a good look around the School and were shown different adaptations that were put in place for the blind children to access the curriculum. This was excellent how they prepare and present this information to the children and we really feel that Ruben will fit in to this environment. It has a real warm feeling and the children that are blind look very happy and well supported by a well established team that have a lot of experience which is important. We have made a decision that this is where Ruben will attend Nursery and infant and juniors. This is such a relief to know that we have this and it is not too far from us. It was lovely to see how the blind children that both Ruben and I have met at the VI playgroup are settling in and progressing. The peers within the classrooms were so helpful and just watching them it was so natural for them to just help the children along in whatever they were doing by passing them items and just chatting and laughing together, which is what every parent wants really for their child to be accepted and for them to feel happy of which I think Ruben will. Now we just have to ensure that the statement is right from the start.


Ruben is doing very well and is more confident in exploring new environments and is keeping his hands in front of his face without prompts which is excellent. We have not been pushing the cane to much as we need for him to be safe moving around as we don’t want him to lose his confidence right now.


It surely is that time "Terrible Twos” for Ruben! He is becoming more aware of what he wants and when he wants it and how to go about getting it...He is displaying the usual behaviours to get the attention from adults such as biting,headbutting and pinching, this has been addressed and monitored as it really needs to be nipped in the bud now. I do believe that a lot of this can be prevented by removing certain toys that frustrate him until he has more of an understanding and also educating others on how Ruben needs to be approached as this has happened a few times in nursery and I think that it may be that he is a little startled as it seems to be when children approach Ruben and this has happened where the children have not pre warned Ruben. This is a difficult one as babies and Children are not used to this as well as Adults but this is small simple steps that whomever is supporting Ruben to raise awareness both to Ruben and any others approaching. Also it has been discussed that Ruben is so attached to his key worker Dawn that it is not healthy and needs addressing and therefore the nursery are slowly moving her away so that Ruben builds other relationships with staff. I understand the need to do this however I know Ruben will find it difficult as it takes so long for him to build that trust in people but it is only for his own good. He loves Dawn so much and she is also very fond working with him and she will hopefully do some shifts with Ruben so they can still enjoy there relationship.


22nd November - Rubens 2nd Birthday!


I can’t believe my baby boy is 2 today! Where does the time go...? We decided to celebrate Ruben’s Birthday at home with friends and family as Ruben is not really at the age where he would enjoy a party as such. He is not really keen on the wacky warehouses so we decided to decorate the house and get some party bits in and wait for all to turn up. It was a very enjoyable day for Ruben he had visits from the following people:


Nanny & Granddad Graham


Nanny & Mark


Grandad and Annette


Auntie Selina


Dawn from his Nursery which made his day!


Becky & Jake,Jade,Sian,Loui


Auntie Claire&pop and Sophie&Rosie





Ruben was more aware that this was his special day and was excited about opening his Birthday presents, he had a ladybird that he sits on and it spins around he liked this a lot after I helped him sit on this and spin him around a few times Ruben turned to me and said thank you, this was one of those moments that you will never forget it was so sweet and just showed how Ruben is understanding more and being able to express his own emotions. Ruben had lots of nice presents and some lovely clothes and Nanny Cath had the most amazing cake which was themed on Jungle book it was very tactile and all edible. Ruben must have had over 30 cards and they were all very nice. Overall Ruben had a lovely Birthday day.




November 2009 weekend in Teigmouth for Christmas celebrations with the NCBS


Again we were fortunate to be invited to the Cliffden hotel for a Christmas celebration with the NCBS. After a 3 hour journey we arrived safely to the hotel. Having only stopped once on the way for a ten minute break, Ruben was very patient although having said this we had to listen to ABBA all the way!! Theo was not at all impressed with this but we had a pleasant journey. When we arrived we were greeted by the team and then shown to our room. We had been given the large family room which was located on the front of the building. This was a huge room with a large balcony overlooking the beautiful sensory gardens and having the most amazing view of the sea, it was very nice. After we had settled ourselves in it was time to go for diner. It was nice to see that all the same friendly staff was still working there and nice to see some families that we met last year plus meet lots of new families.  After dinner we joined all in the bar for meet and greet. On Saturday we decided to brave the weather and go for a walk along the peer and into the town. We stopped of on the way to let Theo enjoy some time in the arcades, when we decided to head back the weather had got worse. It was torrential rain with high gusty winds, not nice we all got back to hotel drenched through! We relaxed and joined all the families for Christmas dinner, this was lovely the food was very nice and the atmosphere was nice




Christmas 2009


 This was Ruben’s second Christmas and he had a feel for the whole festive period. He enjoyed exploring the different decorations we had in the living room especially the Christmas tree. We staggered giving Ruben his presents as he found the whole experience of opening present a bit too much, he loved ripping the paper off his presents but wasn’t interested on the content maybe he had too much too soon. So we introduced him to his presents over a 5 day period which worked for him a lot better. We had dinner at Nanny & Granddads Grahams house where Theo and Ruben had another mountain of presents to conquer which wore Ruben out and by the time we got to Granddad Rupert’s on the evening Ruben was completely worn out overall l though we all had a wonderful day...



 New Year


 We all spent the day celerbrating, s Theo, s Birthday whom was 8 today. We all went out to have a Chinese meal @ Buffet Island which is in Erdington near Zoë’s house. Theo chose to go here as he really enjoyed it last time he went with Rob. Theo took Cane his friend form school. Zoe & Roy, Marcus, Remi, Cade met us there and we had fun. Ruben was very adventurous trying different types of dishes and seemed to enjoy the day out. When we got home Nanny & Granddad Graham popped around to see Theo who had more presents and he also had a birthday cake which had a dinosaur on it Ruben was able to feel this as it was a raised figure on the cake! We all had a little rest before going around to Grandad, Rupert’s house where we always end up with the family to bring in the New Year. Auntie Selina, Claire and Rosie, Sophie & Pete came amongst Annette and all her family we had a fantastic night bringing in the new year there was lots of nice reggae music and lots of Annette fantastic food not to mention the fireworks that pop had brought round to let off. Ruben really enjoyed this sometimes he was feeling in secure and at times the bangs made him jump however he was reassured at all times and enjoyed partying until the early hours!! Happy New Year Ruben’s




 Ruben is over all reaching the milestones of a typical 2 year old in some areas Ruben is over and above his age. This being his speech and language skills, his listening skills and communication skills. Ruben is trailing fantastically around familiar places and is confident more in unfamiliar places however needs reminding to protect his face when walking around. Rubens mobility has improved immensely and is walking at a very good pace and his gate is coming more together as it should be for his age. Ruben will walk with his cane more so and we are trying to encourage Ruben to use it more effectively, we have been emailed some video footage of a toddler in the states from Daniel Kish whom is receiving early cane skills from a trained mobility officer and she is doing very well. We are trying to use the same learning techniques with Ruben which is making the whole experience interesting and fun, therefore we make it in to a game and sing rhymes such "side to side nice and wide. We also get him to use his orientation skills more by reminding him of where he is and which way we are going how many steps we are using and different land marks such a post box, shops, etc Ruben is at his best and very happy to be out and about and is no longer happy or content to be playing in doors with his selection of toys. Our aim is to use more public transport this year and do more walking. Ruben does a lot of walking with his Nanny Graham and this has built up a lot of Rubens stamina and confidence, Nanny Graham is soon to get her free bus pass so maybe Ruben will travel on the buses a lot with Nanny as she loves to get out and about.