Unique grass!

It's Reuben's 6th birthday today and being a big fan of Thomas the Tank Engine he asked for a few of his favourite engines as presents, nothing too much, he's very easy to please! Sometimes it's easy to forget that as parents we find it satisfies our own need to want to give our children extravagant gifts but Reuben simply only wants a few select things and anything extra is too much. We used to feel a bit tight by not giving him a lot of presents but it's the worldly pressure to spoil our children which we realise is to blame and so we listen to what Reuben really wants and not what society says we should buy him. Reuben has autism and can become overwhelmed and suffer anxiety if there is too much happening which is new so we try and keep the day calm for him and take things slowly.

At Christmas Reuben received a present of a 'grow your own grass head' - a fab idea but one day before it had even been watered and started to grow it disappeared! Later Reuben told me he had put it in the washing machine and it had gone through 2 wash cycles with detergent! I took it out of the washing machine and it was a funny shape, one ear was missing and I thought it would never grow or do what it should after what it's been through so I was about to throw it away.. but then I thought I'll just try and give it a go, there's no harm in trying to grow the grass and we'll see what happens. I gave it water, placed it in the kitchen and kept watering it when it needed. I wasn't hopeful but then this happened!

 

There is grass growing out of the pirate's nose, his ear and all over the place where it shouldn't be instead of growing from just the top of his head, there are bits missing and it's quite funny looking as the seeds had dispersed through the net while it had been in the washing machine instead of just being at the top, but it's really healthy grass and I think it looks really unique and I like it! I prefer it this way as it's interesting :) It reminded me of Reuben's autism in a way, it's part of who he is and although Reuben might have bits of him that are a bit jumbled up like the grass seeds and different to the other children his age he's unique and I love that about him!

It's easy though to fall into the trap of taking the lazy route where autism is concerned and not trying things because it's the easy option, and not wanting to put a little more effort in because it's challenging - and like the grass head it would have been really easy to just not be too bothered about letting it grow to develop the potential it had but I gave it a chance and it completely surprised me by the results and it was better than I anticipated.

What I'm leading to here is this story about Reuben and water. Last year Reuben had a real phobia of swimming pools, they triggered his anxiety attacks, he wouldn't go near the water or touch it, he completely had a full on meltdown where pools were concerned. When Reuben started year 1 at school we knew they would be going swimming every Wednesday and I had met with the head teacher and we thought it would be a good idea that Reuben stayed at home instead of going swimming as he had so much anxiety where the pool was concerned - the lazy option! Reuben's fantastic TA though said no! She said he was to go with the class on the coach the first week and experience the coach ride to the pool with the class and they would sit in the café while the class went swimming, read books and travel back with the class. He could experience the smells and the sounds of the pool from a safe distance and enjoy being with his class. I was told the goal would be to have him in the pool swimming by Christmas and I thought there is absolutely no way this is going to happen!  After a couple of weeks of sitting in the café exclusively he was introduced to a quick walk along the poolside watching the class for a couple of minutes after some time in the café, the weeks after it was him touching the water with his hand, putting a watering can in, then a few more weeks and he had his feet in, then his legs and one week he got changed into trunks and gone to his tummy in the small pool, the following week up to his shoulders with armbands and then last week he was in the same pool with the other children - what progress!! I was ready to take the easy option and keep him home and he would never have had the enjoyment and experience of swimming with his friends but with patience and giving him the opportunity and the chance he has done really well! It was a big wake up to me that he can do things and we shouldn't just say 'oh he's got autism so he can't' as an excuse not to even try sometimes because it might be hard work, he deserves the opportunity. We rely on other people to tell us things like that because naturally we want to protect him and keep him safe but we have learned to listen to people and take their advice, as parents we just muddle through and we don't know what we're supposed to be doing really, just doing our best so we try and listen to people who know more about autism than us, it's difficult sometimes and we have to swallow a bit of pride every now and then and be willing to adapt when we need to change something! Similarly, in reception class we did take the easy route with the nativity and Reuben didn't take part but this year with the support of the staff, Reuben took part and stood at the front with his class as they sung a song, I would have kept him away from doing the nativity again this year had the TA not ask that he give it a go with her support and it wasn't easy it took time but he did it!

 

Happy 6th Birthday Reuben! Here he was this morning playing with some of his presents

 

 

And some photos of Reuben with Kuiper :)

 

 

 

 

 

 
 

 

We Had A Really Lovely Friday!

This is my post about Christmas (Friday to Reuben!) I thought now the kids have gone back to school and Kuiper is sleeping it was a good time to do it!

Christmas with a child on the autistic spectrum - is it difficult or easy? We made it easy, which was difficult! Well not so much difficult, just lots of planning, lots of logistics and realising that the traditional Christmas Day that people usually have with turkey, sprouts, perfect roast potatoes in duck fat and things like that are not important for a perfect day in our house.

Where we struggled - the week before Christmas Reuben was off school and out of routine. He enjoys being at home but needs a few days to get used to being not at school again. All in all he coped well - except for times when he encountered other adults in shops or out places - the reason why? I've only just realised that it is in-built into every stranger we encounter that they have to approach children and ask if Father Christmas is coming. Christmas is a time of anxiety for Reuben, big trees, flashing lights, new things everywhere, they all set off his panic attacks and the concept of Father Christmas is bewildering to not only Reuben but many children who have ASD. Thinking about a man in red suit, big beard, falling down chimney bringing new presents, it's really confusing for an autistic child to understand. We had many anxious times, Reuben shouting in bewilderment at people who asked him questions, trying to run out of places because strangers had asked him about Santa and him kicking and punching out because he simply couldn't understand about Father Christmas. I really wanted to stop people from talking to us in queues or at the park who felt it necessary to ask the children whether Santa was on his way before meltdowns started and had to create many diversion tactics and anticipate conversations before they started.

We asked ourselves whether the Christmas 'traditions' were really important - big dinner in the middle of the day, sprouts, Christmas tree etc and we decided that most of them weren't and we had simple turkey sandwiches for lunch, sausages and mash for tea and everyone was happy, no-one was being forced to eat sprouts out of tradition! Also - less time cooking meant more time enjoying playing games with the children, watching Christmas television together and enjoying time with Kuiper our puppy which for me made Christmas really lovely, no pressure to spend all day cooking and it was really nice not to have to do that Christmas food shop!

The week before Christmas we invited our friends and  family to visit to enjoy their company and exchange gifts which we opened on each day. This worked well for many reasons, family had the opportunity to see the children open their gifts and they were played with when they were opened. In previous years opening all the presents at once in one day on Christmas day has led to confusion - who bought this and that, big pile of presents and only one thing being played with, usually for Reuben the thing  being played with was an existing toy he already owned as the pile of new things was too much and overloaded him causing him to panic and withdraw to something familiar. So with careful planning we spaced out visits and he enjoyed opening presents on each day. By Christmas day he was familiar with presents, pulling Christmas crackers and the sights and sounds of Christmas.

Reuben only asked for 2 new things for Christmas, 2 trains called Connor and Caitlin and he was very happy to receive them, they are still his favourite presents like last year he asked for 2 trains too. He also asked that we wrap up all his existing trains which he already owns so he could unwrap them which we thought was a brilliant idea and every time he opened a present which was new (satisfying our own parental need to give him things even though they were superfluous to need) he also opened a train alongside the new present so that he had something familiar, really it was just trains he wanted to open - a lesson learned for his birthday in a few weeks, trains it is! We had a few people ask if our Christmas was spoiled because we didn't have all of our presents on Christmas day and I say no - it made it better!  

Reuben relies on his routine and finds change difficult to understand. He uses a calendar with dates and times, and knows when things are happening. When something is going to happen which is new and out of routine we have to use social stories to explain to Reuben what will happen, otherwise he can't understand - simply by telling him verbally isn't enough. Reuben understands by visually seeing the words and pictures and can cope better once  he has seen the order of events written out. These are really crucial for us and help in lots of situations. We are fortunate to have friends at church who are understanding of autism and additional needs who use visual prompts and cards with the children's work and provide sensory toys and resources for children like Reuben who have difficulty becoming overwhelmed in certain environments and situations. Reuben's TA also makes these social stories for us and they work so well.

 

The only slight wobble on Christmas Day was going to the Church Service in the morning. As Christians we attend church every Sunday but this was a Friday and although it was in the social story that we were going to church it was not like a Sunday Service and there were lots of people saying funny things like 'Happy Christmas!'. There was no children's group which Reuben enjoys, but because the Church we attend recognises the importance of continuity for children like Reuben, the additional needs resources were set up for them and we really appreciated the effort it took from James and Sarah to get up early on Christmas morning to set everything up and then pack it away again after so that we felt that we could attend and bring Reuben out of his routine.

Even with the social story and the resources and doing everything we could to prepare him, Reuben still experienced an anxiety attack and to calm him we wrapped him in a specially made weighted blanket which gives him pressure on his muscles easing the symptoms of the anxiety and covered him with a foil blanket crunching the material against him which he finds soothing (he had also taken off his clothes which he does when he is very stressed so has little on underneath the blankets!) By covering his head, his ears and sometimes his eyes and swaddling him in blankets he calms down and the panic attack subsides.

 

 

 

Reuben is enjoying having Kuiper in the house, Reuben often climbs into his bed for a snuggle, I think we will need to get a bigger basket so that they can both fit!

 

 

We hope you had a lovely Friday too! :)

Introducing Kuiper!

Look at that tail wagging!

Today we brought our new puppy Kuiper home to live with us. Kuiper is a Chocolate Labrador Retriever and will be our family pet but will also be trained to be Reuben's therapy dog. He is lots of fun and is already getting to know Reuben and Esther :) 

It took us a long time to choose the right kind of dog and we made sure that he came from a good breeder who was registered with the Kennel Club and the parents were healthy. We had to travel all the way up to Carlisle for him (twice) and hopefully Kuiper will love being part of our family!

People often ask me how we cope with Reuben's physical conditions, his frequent surgeries on his spine and many procedures, appointments and dealing with dressings, physio etc but I always say that the physical stuff is easy, we've been shown how to deal with all of that and it's just routine. For us the difficult bit is dealing with the unpredictability of the autistic spectrum side of Reuben's conditions - many people don't see what happens on a day-to-day, hour-by-hour basis. Reuben suffers from anxiety attacks which can be triggered by things out of our control, a stranger in a shop might trigger off a panic attack simply by being there or the tiniest of changes to routine.

An example of an anxiety attack happened 2 days ago, it was Christmas party day at school. Reuben and all the children were asked to go in party clothes, and because Reuben wasn't in school uniform he quickly became distressed. We had told him for days that Thursday he would be in his own clothes but Reuben still couldn't understand or imagine for himself and as he was walking to school seeing all the other children in their clothes instead of green uniform he started on the 'cascade meltdown' we are familiar with. You can sense the adrenaline which starts running through his body, he becomes very worked up, his arms and legs start kicking and punching out in all directions, he can run and run (fight or flight mode!) and he loses the ability to communicate so can't speak or tell you what is happening but we know by his actions that his body is flooded with panic chemicals sending him into a meltdown. When he arrived at school he was so worked up that he sat on a bench and his body shut down and he fell asleep, this is quite common for Reuben - it's like a computer re-start. The bell rang and I carried him into school asleep where his TA came and he woke up, restarted his body's computer and he was talked through the day of events before anything started. After that he had a really good day, enjoyed the party with some headphones on to dull the loud noises from the entertainer and he won pass the parcel which he was pleased about! He did a bit of dancing and came out of school happy :) 
Just little things like this cause him anxiety frequently and we are constantly planning and evaluating every scenario and talking him through things and writing social stories and writing things on the calendar to help him cope. 
We can't do it by ourselves though and there are many people who we cannot thank enough, especially our friends and family, the support of the children's workers at church and Reuben's new TA at school who has helped us so much this term, going beyond expectations & working to make social stories for him to use at home and helping us all as a family to support Reuben better with the experience she has working with children like Reuben. 
We are confident that this year Reuben will be happy at school and enjoy himself and do well, and also that having a dog in the house will have a calming effect on him and help lessen the anxiety that he suffers.

It's Christmas in 6 days, a time of anxiety for Reuben and we have learned a lot over the past few years about how to make Christmas enjoyable for someone with autism. It's mainly not to overdo things, not too much all at once so we stagger out the family visits and present opening sessions by having them on different days. Reuben can open his presents when he sees family and then he can play with his new toys as he gets them rather than a big present opening session on Christmas day where he's overwhelmed with new stuff and doesn't want to play with any of them! We ask him what he would like and he sees his presents being wrapped so he knows what most of them are and he knows which days he can open them and he's happy with that and accepts it! He has only asked for 2 trains but he has a few other presents which he has seen and is quite excited because he likes them. We haven't put a tree up this year because in previous years it has been too much for him having a great big bright tree in the house so we have bought a light up train for the window and have put lights up out of his reach so it still looks festive! On Christmas day we won't be having a big dinner, just normal Friday foods with the exception of a Christmas pudding for afters (gluten free one for Reuben) and pull some crackers which we will do every day this week so it's not too new all at once.

So that's the plan for Christmas! Hoping Reuben has a peaceful Christmas and also to everyone reading to the end of this long post that you all have a lovely Christmas too whatever you're doing! Just a note too in case you were wondering about Kuiper's name, he is named after the famous astronomer Gerard Kuiper, who the Kuiper belt in the solar system and many other stars are named after :) - pronounced Kyper! He's currently sat on my knee while I type this having a sleep after an exciting day meeting his new family and home :) 

Have a lovely Christmas and a peaceful New Year 2016!

Bouncing Back!

A week ago Reuben went to hospital for his latest spinal surgery, he went to theatre at 5:30 in the afternoon, a little later than anticipated but Reuben managed being nil-by-mouth for the day with the help of lots of bubbles and amazing staff at the hospital. He likes to wait for the bubbles to land on his face and pop!

 
 
Everything went really well, we stayed in overnight and came home on Friday afternoon and his recovery has been better and quicker than previous surgeries, Reuben is back to being his cheeky self again and should be back at school next Monday :) The surgeon did an amazing job, he has lengthened the rods in Reuben's spine by three-quarters of a centimetre and Reuben is healing nicely.

 

Reuben has lots of tubes and wires when he comes out of theatre but they don't bother him, the only thing that ever bothers him is the light attached to his toe or finger, either on the grip or the little plaster they sometimes stick around to monitor his heart rate and oxygen, it's always the red light that he doesn't like being attached to!

 

 I'm enjoying having him at home again for a while before he goes back to school, today we're doing bonfire activities and making chocolate apples - lots of fun :)

What did I make the mistake of doing?.. Buying advent calendars in October!  Reuben thought the first of November he could open his first door... after a moment I just thought well it's my own fault, we'll have a calendar for November and December this year then! I'll have to think of something creative for the 26-30 November but never mind why not! And of course Esther has to have hers too and can't be left out!

Bimanual Synkinesis

 

Reuben has a neurological condition called bimanual synkinesis, or mirrored hands. He's had it since birth and when he moves one of his hands, the other one involuntarily moves the same without him realising. This is a recent video of Reuben writing his homework, notice how his left hand moves like the right. He has had lots of physiotherapy to help him with dressing and doing zips and buttons to help him with everyday stuff and we are working on knife and fork skills which is a real challenge!

2 years on

2nd October 2013 we were preparing Reuben for his big spinal operation to have discs removed and metal rods inserted down his spine to keep him straight. It was a tough decision, as it meant that he would have the initial 10 hour op and then need another 20 operations afterwards which are still on-going now and will be for the next 8 years. The surgeon at the time didn't know before but told us afterwards that during the operation they discovered that Reuben's spine and chest were in such a bad way that they estimated his chest would have been crushed within 2 years without the operation. We're 2 years on now and really glad we made the decision. The surgeons worked miracles that day, we've still a long way to go but Reuben is happy and determined to still run around like everyone else!

 

Reuben at the Forbidden Corner in Leyburn

TAF Meeting,Tenerife and Terrific Talking!

After 4 weeks of being off school Reuben is back again and enjoying the routine! He goes in for the mornings and comes home in the afternoons, this has worked really well but from September in year 1 Reuben will be full time every day. We have recently had a TAF meeting (Team Around the Family) - as usual there was a room full of people! There are lots of different people who work with Reuben and they attend the meeting to see how he has progressed and the next steps forward. At the meetings there are us the parents, Teachers, Head Teacher, Senco, Teaching Assistant, Physiotherapist, Occupational therapist, Speech and Language Therapist, Educational Psychologist, Consultant Paediatrician and this time we were joined by the new TA for next year. He has recently had an assessment done by the educational psychologist and together with the reports from all the other departments and lots of form filling the application for his EHCP has been submitted (new version of the special needs statement). This now takes 20 weeks from submitting to receive the decision but everyone seems confident that it will go through for him.

Recently we went away for a holiday to Tenerife, Reuben loves holidays, airplanes, sunshine and discos and copes with the new routine amazingly well - at home if one thing changes he finds it difficult to cope and we rely on strategies to help him but on a holiday  because everything has changed all at once he doesn't mind, just gets on with things and enjoys himself! We had a lovely time, here are some photos

It was cloudy most days but we did see a little sunshine and it was warm. We had lovely views of the mountains behind us and the sea in front

Reuben's first experience of black volcanic sand!

Reuben loved sitting on the nets at the front of the boat to see the water below!

We saw lots of whales and dolphins out in the sea

The whales and dolphins came really close to the boat!

 

 

 

There has been a big change in Reuben's speech lately and his speech therapist has worked amazingly well at encouraging him and helping us with guidelines, plans and tips, all credit goes to her for how well he's doing! Because of Reuben's autism he finds it difficult to interact with others, respond appropriately and initiate dialogue, he prefers his own company and tends to ignore others around him but through modelling conversations and giving him appropriate responses to questions we have recently seen a big change, especially when he asked someone what their name was and then said hello to them and used their name without being prompted - for us it was a big step and we were amazed!

 

During Reuben's assessment from the educational psychologist last week they identified that he has islands of ability, he does struggle in a lot of social situations and the like but there are pockets of things which he is good at, mainly reading and writing, numbers and shapes - these photos are out of context but they did make me chuckle a little to read - officially 'off the scale' :) His reading age is 9 years 3 months which is really encouraging (Reuben is 5) a lot of the time we only seem to hear that he can't do this or he can't do that so it's nice to be able to say something that's really positive!

 

 

 

A few days ago we saw the dietician - Reuben has IBS, wheat and gluten allergy and an intolerance to citrus fruits but eats a healthy diet, mainly fish, vegetables and foods 5 year olds usually won't go near! He chooses his own fish from the fishmongers and will eat onions, broccoli, salad and things like that but doesn't go near a cake or biscuit! (some of the gluten free cakes are a bit sawdust in texture so I don't blame him!) She would like to see him gain a few extra pounds to match his height on the centile charts so has prescribed some special protein shakes and advised us to add peanut butter to his diet and to add ice cream or puddings to every meal, more cheese for snacks and an extra meal before bedtime, generally just as many calories as we can get him to eat! He has always been low on the weight charts but his weight dips when he has IBS episodes or goes for operations on his spine so we need to bulk him up a bit so if he loses any more weight it's not a big percentage. I think I'd like to be told to eat more puddings! :)

 

 

One more picture of Reuben to leave you with! Bedtime smiles :) See you soon x

 

 

 

 





 







Update in Heart Magazine

12 months ago we shared our story in Heart Magazine and we have a short update in the latest copy on page 9, here's a quick photo of the page and a  link to the whole magazine, have a read!

http://fulwoodfmc.net/2015/05/heart-magazine-summer-2015-planting-potential/

Since the last blog post here's the latest -

Reuben had his latest operation at the end of March on his spine (he has operations every 6 months as he grows) He's fully recovered now, all healed and back to normal and everything looks good so far :) This was Reuben's 5th operation and he will have about another 16 over the next 8 years or so.

Reuben has finally caught chicken pox! Thankfully it was just at the right time, we had avoided him being in contact with it while he was in hospital every 10 weeks for the spinal casting as it could have put his treatment back but he caught it a few weeks after his last operation so everything worked out well and he's been great with it! Only a few spots, dosed up on Piriton and he's hardly noticed he's even had it!

 

A recent picture of Daddy, Esther and Reuben - a nice sunny day at the park :)

 

 

Our ICE cards arrived (In Case of Emergency) these are a great idea, if we're in an accident for example I carry a card with Reuben's medical details on alerting people to his conditions and he carries one on a keychain, there are stickers for the car so that emergency services know we have ice cards on us and they will know what to do. There are different ICE cards available for different conditions, epilepsy, diabetes etc for children or adults, I think they're a great idea, search for them on Google if you want to have a look.

 



Reuben is still at school for mornings and home in the afternoons where we do reading and other activities, often number based! He loves to learn maths and French but enjoys lots of other things too :) We have a team meeting in June with all the people involved in Reuben's care, Speech and language, occupational therapist, educational psychologist, teachers etc and we will talk about what we have been doing recently, and the next steps forward and planning for the next school year.

 

Cheeky boy pinched the best seat in the garden :) Reuben still has those long eyelashes!

Video - Reuben's memory for numbers

I  took this video 6 months ago but forgot to upload it on here - Reuben has a memory for numbers - and the numbers just get bigger and bigger! From September 2014

The Best Of Both Worlds

Reuben's school have been amazing - from about a year before he started really - and probably before when he used to come and visit Esther (big sister) at school and have a look around for his favourite toys, he was allowed time to get to know the school and was given lots of encouragement and friendship by all the staff who met him and everyone got to know him really well. Lots of preparations were put in place for him to attend, lots of meetings, new staff, courses attended for SLT, helping with allergies and lots of other things which were beyond what we could have hoped for in order to settle Reuben in and we are so blessed that Reuben can attend, we can't praise them enough.
In September he started school, he was introduced slowly the same as the rest of the class, first a couple of hours per day and then building up to a full week all day. By October when all the class had settled into full time school it was apparent that Reuben was struggling and so we decided with the teachers that Reuben would do mornings at school and then bring work to do at home the same as the class were doing. This worked really well, Reuben was settled, calm and enjoyed the routine, he looked forward to coming home and eagerly wanted to sit and do his reading and work, and I loved it too! Afternoons of cutting and sticking, colouring, maths, writing whatever it was we were doing, Reuben was engaged in the quiet environment of home and it was lovely having that time with him.
After Christmas we tried to increase the hours slowly towards the goal of being in full time by the end of half term, we tried an extra couple of hours Mondays, then trying to add on an extra day, Tuesday then Wednesday and hoping by the end of half term it would be 5 full days but again Reuben struggled so at the moment we are going back to just mornings again and getting him settled and enjoying the routine of mornings at school and home in the afternoons. The staff at school have been incredible and it's only because they work so closely with parents and everyone involved that we are able to do what is best for Reuben. The teachers have always had time to speak to me each day and we've ben kept informed of everything that is happening - we couldn't wish for a better school. We'll just have to see how it goes when we try and introduce more hours but for now he has the best of both worlds, enjoying a time at school and then time at home!

Reuben has just had his 5th birthday a few weeks ago! He was really excited, he had a calendar and counted the days until his birthday, it's the first time he has understood the idea of birthday presents, and only asked for 2 trains - that was all he wanted so he chose those and was really happy with them, he got a few other things too, but he trains were his favourite and he loves playing with them :)

 

Reuben and his Paddington bear, he went to see the movie and loved it! 

 

One day he will have grown into his uniform! This jumper is for age 3!

 

Reuben's personalised birthday book with his name through it and Esther's name too!

'Can I put my school Uniform on?..'

Before Reuben's birthday I thought I'd best talk about our Christmas! We did Christmas a little different this year, instead of having all the presents and (over)-excitement on Christmas day we carefully planned small present opening sessions with friends and family in the week before and week after Christmas. This meant Reuben could cope better and by opening his presents in stages he could play with them properly and enjoy them rather than having a giant pile on Christmas day and only playing with 1 thing! On Christmas Eve we went to a hotel in the lake district and stayed there until boxing day. Reuben really likes holidays and so this was perfect for him as he can cope better with changes to routine when he is away from home. We enjoyed the lovely food, cosy log fires, bell ringing and carol singing, games & activities, Christmas day church service and the children enjoyed decorating the tree in the hotel and playing games. We carefully planned the gifts for Reuben so he could use them at the hotel in between courses at meal times or in the lounge and it was worth all the planning and preparation, it really paid off thankfully! We had a lovely peaceful relaxing time and came home to enjoy more presents from under the tree and a family get together the day after.
 

 
Every day in the holidays Reuben asked the same question - 'Can I put my school uniform on?'! He loves his routines and knowing what the day involves so a break can be a bit unsettling for him because he doesn't know what to expect sometimes. We're helping him to understand better by telling him what is happening and using the 'now' and 'next' method which works really well with Reuben. It's very simple but effective, 'now' breakfast, 'next' game.. then 'now' game, 'next' playground... so long as we are consistent with this, Reuben understands and is calm and happy! :)
Up until Christmas Reuben had been going to school in the mornings and coming home in the afternoon doing some work at home with me in quiet. We are starting now to introduce more hours in the school day and seeing if, by half term he will be full time again at school but we're taking it slowly and seeing how it goes.
Health wise, Reuben is due another spinal operation to lengthen the metal rods in his spine within the next few weeks, we haven't a date yet though. His IBS has flared up quite a bit over Christmas and he has lost weight but we're trying to help him put a bit of weight back on, it's not as simple as feeding him more food though, we wish it was!
Reuben has been seeing his SLT (speech and language therapist) and he's doing really well, he's engaging in the sessions and learning to communicate much better, use questions and answer simple questions, we've really seen a difference since starting the new program last September. He does have some funny ways of using language sometimes - if he doesn't know the word for something he will think of anything that looks similar and substitute the word; one day he saw that it had started to hailstone outside and said 'Oh look at all the glitter!'

He's starting to get excited about his birthday and counting down on the calendar the days until the 29th, can't quite believe he will be 5! We're excited too!

Buses!

You'll know what I mean by the title - nothing for ages then lots arrive all at the same time! It was like this with Reuben's first term at school, all the departments which he sees decided to let him settle in for a few weeks to see how he managed before starting their work again with him and then after half term everyone seemed to arrive all at once! There have been a few changes since starting school, it became apparent early on that he wasn't able to manage very well and so it was decided that he just does half a day and comes home to work in quiet in the afternoons with me using the same work which he would have done at school sent home from the teachers. This is going really well and we're really enjoying being together at home for the afternoon doing the homework and learning. He has visits weekly at school from the occupational therapy who are helping him reach a few goals with his hands like trying to use cutlery, fasten his clothes and a few other practical things which he will need to learn. The condition he has with his hands called bimanual synkinesis means that it's difficult for him to do these things.
Reuben has a new speech and language therapist who visits him every 2 weeks at school and he has improved communication amazingly over the past few weeks, we have been focusing on questions like what, who and why to help him understand more about the world around him which he finds quite confusing at times due to the autism but he is doing really well and loves to read books which is helping with his communication.
Spinal stuff - Reuben has healed from his last operation and the next one will be late January / early February, so far everything  is going well, he still has a  long way to go and many more operations but we have  an amazing surgeon and are blessed with a fantastic team of doctors and nurses at the hospital who Reuben really likes.

That's just a quick update for now! Just thought I'd let you all know how we had been getting on! Have a lovely Christmas x

All grown up and ready for school!

 

All set for school! This is it here we go on our next adventure! Reuben is excited :)

Summer 2014

Wow where do I start! Apologies in advance, I haven't updated in a while and there has been lots happening but I'll try and keep it brief!

Today Reuben had his latest spinal surgery to lengthen the rods in his spine which are holding his spine straighter as he grows. He needs this surgery done every 6 months. The operation went really well, he is now home resting, very sore and a bit disorientated from the morphine and anaesthetic but he should be back to himself in a few days. Reuben needed the operation to insert the rods when he was 3,  he was very young to have it done, usually it is done when children are a bit older and the surgeon mentioned today that he might out-grow the rods before he is ready to have the final fusion as a teenager, so what they might need to do is change the rods at a later date for a new magnetic rod which will not need the 6 monthly surgery to adjust, instead a quicker non-invasive adjustment done in out-patients. One step at a time though, we'll just wait and see how he does and see what happens.

We said goodbye to a lot of people over the summer who have been with us over the last 4 years, nurses, health visitors, speech therapy, nursery staff and everyone else involved in the pre-school team of wonderful amazing people who have worked so hard with Reuben and us to get him doing so well this far. Now it's time for a new adventure and a new team of people as he starts school in a few weeks! We have met the support worker for the school classroom who will be helping and we have already had several meetings to prepare for when Reuben attends to make sure that everything is in place for him and he will be safe and enjoy himself at school. His big sister Esther will be there with him and we are confident that he will really love being at school :)

A few weeks ago we met with the paediatrician who deals with Reuben's IBS and food intolerances, she's happy that we're managing so well to keep him stable following the diet that she has discharged us from her clinic at the hospital unless he has major problems again, and now he can just be followed up and kept an eye on at the local clinic to make sure that everything is going ok which is good news, that's one less clinic to attend!

A while ago we also saw the paediatrician who oversees Reuben's Autistic Spectrum Disorder, he monitors him regularly and we're really blessed to have such a fantastic doctor who absolutely understands Reuben and his difficulties and has really made sure that he has been getting the very best care from all the other departments like speech and language, physio etc.

Ok I think that's enough writing, here are a few photos from our summer :) xx

 
We had a holiday to Northumbria, Reuben enjoyed being on the beach, looking round the castles and day trips out and about!

 

 

 

Reuben and Esther on the big wheel - Reuben's favourite ride!

 

 

  Reuben's first donkey ride!

 

 Looking for monkeys at Chester zoo!

 

A day out with Thomas the Tank Engine - Reuben loves going on train rides!

 

At Alnwick Gardens - I think Reuben sniffed every single rose within reach - good thing there were no bees around!












Just one more thing to remind myself really in case it's a phase but Reuben at the moment is absolutely the most loving adorable boy and I never want him to grow out of saying 'I love you Mum' to me every few minutes like he does at the moment, and 'I love ya too Dad!' in his very northern accent! He is full of cuddles and snuggles and wants to share them every minute of the day, even if it's 4am I don't mind, he comes and flings his arms round my neck gives me big squeezes and smiles and lots of I love yous - totally adorable and I hope I never get complacent or take them for granted because every time he says it it's beautiful, long may it last! :)

Superhero :)

couldn't resist this t-shirt :) wondering whether to embroider 'concrete boy' underneath (even though he's titanium boy now!)

Reuben in Heart Magazine

Reuben's story has been published in the latest Heart Magazine - you can read it here online

http://fulwoodfmc.net/2014/05/heart-magazine-summer-2014-helping-the-world-one-person-at-a-time/

Quick other news :

• Reuben has been given a school place in the school of our preference :)
• Reuben's latest gastroenterology appointment went well, he goes back in 4 months
• He enjoyed a day out with Thomas the Tank Engine and met Sir Topham Hatt!
• We had a little break for a few days during half term and stayed on a farm where Reuben fed new born lambs :)
• He is missing playing chess with his big brother who is at university
• Speech and Language is improving steadily, everyone is really pleased with the progress he is making
• So far so good with the rods in his spine, everything is going really well and we've had no problems
• His hands still continue to mirror but he can write identically with either hand!
• The paediatrician has now given a final diagnosis of autistic spectrum disorder
• Occupational therapy came to measure his equipment at home, he's had a big growth spurt and needs some new items to fit.

Latest nursery photo from Tempest Photography :)

Rod Lengthening Op

Yesterday Reuben went to hospital for his first rod lengthening operation on the rods in his spine, it was a month early but he had grown quite a lot and needed it done a little earlier. Everything went really well, we were there at 7am for  the x-rays and consenting, in theatre at 9am, he was back on the ward at 11am and recovered so quickly with a little sleep and lunch he was walking about and they let him go home at 1pm :) he's sore and still on pain relief at the moment, he didn't have a good night's sleep but we're pretty sure he'll be running around as normal soon!

He always looks really tiny in the bed! Watching his favourite Ben and Holly's Little Kingdom while he was coming round from the anaesthetic.

 

Reuben will need this operation done every 6 months until he is a teenager, then the metal rods will be removed and replaced with a new structure and fixed with bone graft as a spinal fusion.

 

Reuben is 4!

It's been a while since I last updated so here's just a quick summary of how everything is!

Reuben's spine is doing well, he's all healed up from his operations and we've had no problems, we've had to be careful about him falling or bumping but he's doing well so far. He's back next month for his pre-ops for his next operation in April to have the rods lengthened. 

Reuben survived Christmas time, he had a few wobbles and the Christmas tree had many frustrated times of being pushed over but all in all we managed to keep him calm and  try not to make too much fuss of the whole thing but also make it special for Esther without upsetting Reuben with too much change or new things, as he gets really distressed with things being out of routine or unexpected things happening. He enjoyed opening his presents and he likes playing with his new toys :)

At the beginning of January Reuben saw the paediatrician who is leaning now more to a diagnosis of Asperger's, rather than high function autistic spectrum disorder, we have a TAC meeting tomorrow with all the other departments involved in Reuben's care and we will talk about this more then. At the meeting will be the paediatrician, specialist health visitor, educational psychologist, occupational therapist, physiotherapist, nursery workers, disability inclusion support worker, the head teacher of the school Reuben will be attending in September and us, with apologies from the speech and language therapist who cannot attend but she visited last week and identified areas where Reuben is struggling so we can work to helping him with those - it was things like Reuben couldn't understand other people's emotions or feelings so it's something we can help him with following the episode plan which we will receive soon and this will be implemented at the nursery and followed at home.

Last week it was Reuben's birthday - he's now 4! He enjoyed opening presents and we went to visit family on the day. He likes the minions from Despicable Me 2 so his presents were based around those and the gruffalo which he still adores.

Here is a photo set we had taken of him for his birthday :)