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It's been an interesting and eventful few days for us as a family. Wednesday brought Foz's day off and the afternoon found us at home having some dinner before a planned trip to the park. We left Bee watching CBeebies as Foz brought the washing in off the line and I nipped upstairs. We'd recently got Bee some new George Pig bedding and Bee was very excited as Daddy was bringing it in off the line.

I started downstairs a few minutes later to find Bee halfway up, unattended dragging her George Pig duvet cover behind her saying "me bed, me bed". She wanted to put it on her bed. I said her name and asked her to wait there, stay there, panicked even though I knew she was capable of climbing the stairs. It was the bedding that worried me. 

As I shouted her her feet got tangled and she lost her balance, falling face-first down the stairs. I screamed and dashed down after her, nowhere near able to make it in time and she hit the bottom with her shoulder and the side of her face. I was horrified and screamed for Foz, who came running out of the garden. I picked her up and thankfully she was hysterical (and not unconscious) but her nose was bleeding and a lump was forming on her temple. I was concerned about broken bones and we agreed a trip to A&E was necessary.

Foz held her on his knee, trying to calm her down as I dashed about packing a bag with all the essentials. Within 10 minutes we were in the car and making the 10 minute drive to the hospital, feeling like the worst parents that ever were or will be.

A&E booked us in and we went sent down to Children's A&E to wait for the doctor. Of course once we got there and Bee saw all the toys all she wanted to do was play. Typical. I've lost count of how many times I've said to a doctor "she is ill...honest!"

 After a couple of hours of waiting we were sent home with a head injury advice sheet and a warning to keep an eye on her, like we wouldn't! As she hadn't been knocked unconscious they weren't too worried about concussion and she had brightened up during the wait, even though she was still a little quiet. We took her home and kept her up for the required 2 hours before Foz put her to bed.

The following morning, Thursday,  Bee woke, seemingly o.k but as the day wore on I could tell she wasn't herself. She was quiet and wobbly on her feet, had a very snotty nose with a cough and kept stumbling. Her temperature was on the rise too. Still, there was nothing concrete to justify taking her back to see a doctor so she had some medicine and went to bed at the usual time. 

Just past Midnight I went up to bed and popped my head in to check on her. She was surprisingly already awake and so I went in, sitting with her a while and stroking her hand. She was very hot and snuffly, letting out the odd little cough. After 10 minutes or so she started making the sound that I know means imminent vomit so I sat her up and shouted Foz, who came up with wipes and other necessities. She was sick everywhere and as I stroked her back for comfort she suddenly went rigid and almost flung herself back onto the bed, her eyes bulging and not focused, her arms and legs jerking with spasms shaking her whole little body. She wasn't drawing breath. Foz and I panicked, him trying to hold her to stop her hurting herself on the metal frame of her bed and me screaming her name. I ended up clapping as loud as I could in her face, it was all I could think of to stop her. The whole thing lasted about 10-15 seconds but it felt like a lifetime, those moments where my daughter wasn't breathing and I had no idea what to do, I was helpless. 

After she snapped out of it she was hysterical. Foz and I didn't even have to say anything to each other, he started to comfort her and get her changed from the sick-covered pyjamas and I rushed around packing another bag for A&E. We were on the road by 12:40am, making the 10 minute trip. All kinds were going through my mind, my main concern was that the bump to her head had caused some kind of brain damage. Looking back it was probably a silly fear but I'd never seen her like that, never seen anything so terrifying. 

We were seen fairly quickly at the hospital, although the main A&E was busy there aren't many children need emergency care at that time in the morning. Thankfully it was the same doctor as the day before so we didn't have to try and explain everything, just what had happened that evening. He was concerned and after giving us some Calpol to put down her tube to bring her temperature down he arranged a bed on the ward.

We made the long trek up the corridor to the Children's Ward where we were lucky enough to have a whole 6-bed bay to ourselves. I'd been worried about sharing the space, as mentioned in previous posts, Bee doesn't really understand appropiate behaviour in certain situations and we would have found it very difficult (virtually impossible) to keep her quiet in respect of children & parents around her sleeping. As far as we're aware Bee doesn't know how to whisper. 

By the time the on-call doctor had been round and Bee was able to sleep without being poked and prodded it was getting on for 3:30am. We were all shattered and I left Bee sleeping to take Foz home, he was supposed to be at work in just over 5 hours! We hit McDonalds on the way home, both starving and I stayed at home long enough to eat it with him before heading back to my sleeping Bee on the ward. By this time it was getting on for 5am and as they were due to wake her then anyway (every 2 hours is standard precaution for a head injury) I paced the ward trying to stay awake. Once the check was done, she woke quickly and was alert, both she and I were able to sleep. I curled up in the uncomfortable chair next to her bed, padded it out with pillows and tried to get some sleep.

Home comforts can make all the difference

I was up again by 7am, when the shift change came in. Nurses don;t make any allowances for people sleeping and the ward gets noisy very early. Thankfully Bee slept on, the poor kid was exhausted, so I sat and quietly read my Kindle, waiting for breakfast to come round. My girl must have the nose of a bloodhound as she started to stir just as the breakfast trolley made it to the bay next to ours.

Two plates of toast, a cup of tea for Mama and some CBeebies later and Bee was looking a little brighter. Her raging temperature was gone and she was more alert.



Of course Bee wasn't happy to watch CBeebies in her cot for long so it was off to the play room, which has had a revamp since we were last in-patients. It's very hard to convince a doctor that your child is ill when she's doing this....

Around 10am the doctor came and had a chat with me. The diagnosis: Bee had a febrile seizure brought on her by very high temperature. It was nothing to do with her fall from the day before, it was simply a coincidence.

As heart complications are common in children with Kabuki Syndrome and seizures can be related to that the doctor ordered an ECG for Bee, just to be on the safe side. It came back perfectly clear and we were allowed to go home. 

Having her ECG

We are aware though that seizures can suddenly manifest in older children with Kabuki Syndrome and it's something that we need to keep an eye on. Should she have another one and there's no high temperature we'll have to go back for further tests. As it is we're on the waiting list for another EEG due to her little 'absences', moments of tuning-out.

Overall it's been a very stressful and worrying few days but Bee has come through it all fine, just a graze on her nose, a bump on her head and a bit of a cough & cold. Thankfully she'll be ready for the start of school on Tuesday, she's such a little soldier.

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I want to add here that our NHS is a very important institution in this country. We've needed a lot of support for Bee since her birth and it's always been there for us, without charge. We've always received the best of care and have met some wonderful medical professionals along the way. Sometimes, when headlines like 'hospital lets patients die in corridor' etc hit the news it's easy to forget that these are isolated incidents in a huge network of healthcare that supports our entire nation using world class training, techniques and equipment FOR FREE.

It doesn't seem to really be penetrating the public consciousness yet but the current Conservative government is attempting the sly, secretive dismantling of the NHS and it's very important that every UK citizen who cherishes what we have gets behind the campaign to save it from privatisation.

This is something that is very important to me.
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Shopping

Bee loves to shop.

I mean really loves it.

Whenever I tell her we're off to the shops I get excited squeals, arm flapping and lots of stamping. Usually it's just to Tesco for our weekly food shop, something I often see other kids throwing tantrums about. But not my Bee. She loves to bring her little, pink, Minnie Mouse trolley and find the items we're shopping for. Shopping has always been a great confidence-builder for Bee, she experiences new people, new textures, new situations, and I always encourage her love of shopping as much as I can. 

The downside is: I think I'm creating a money-spending monster! I often joke that if my Bee goes on to marry her husband is going to hate me! 

This week my car had it's MOT (passed thankfully!) so Bee and I got to spend some time mooching around the town center, browsing in the shops. Much to her dad's dismay I can never seem to come away empty handed and we managed to pick up a pack of Peppa Pig Bath Jigsaws. However when we got home they sneakily went away for her birthday in September and she's forgot all about them.

In one of the empty shops in the shopping center is a very large 'what's on' advert for Liverpool Echo Arena and who should be up there but the one and only Justin Fletcher! We walked past this multiple times during the course of our trip and each time we had to stop when Bee excitedly chattered about it and tried to tell anyone passing that Justin was up on the wall! She loves him so. 

We know Justin is on tour and seriously considered buying tickets, despite them being £40ish for adults and children alike (shocking). However after much thought we decided that Bee probably wouldn't get out of it what we want her to. The Echo Arena is just that: a huge arena. If we're somewhere near the back or even just the middle Justin would be tiny on stage and I don't think Bee would really follow what was happening for a full 2-hour show. The show is also billed as 'Justin & Friends' and features a whole host of characters form the CBeebies channel that she isn't really interested in. So, we'll leave it and go for 'In the Night Garden Live' again later in the year.

Of course we couldn't leave the shopping center without a go on the "Pi Pi rye", a highlight of Bee's day every single time!

Bookworms

Anyone who knows me will know I have a deep and abiding love of books and reading. It's something my parents instilled in me as a child and even now there's not much I'd rather be doing than reading a good book with a cup of tea. Rock and roll.

I want Bee to enjoy books as I have, to get the same pleasure from them and have her world opened by a love of reading. She owns a lot of books but for the last few months I've been taking Bee to the big library in Warrington town center. It's something I used to do as a child and always loved spending time there, reading and choosing books to take home. She's been very much enjoying it although I think is still getting her head around the concept.

Me: "So are these the books you want to take home?"

Bee: "Me pay"

Me: "No honey, we don't need to pay, we can borrow them for free"

Bee: "Why?"

Me: "Because the library will let us take the books home to read for free but then we have to bring them back for someone else to borrow"

Bee: "Why?"....

This is a conversation we've had more than once at the library so far. I suppose for a child who's so used to shopping, visiting a library can seem an awful lot like a bookshop and understanding the differences can be a little challenging. She loves the whole experience though.

My only challenge during our visits is keeping Bee calm in the pram while I browse for myself. She has a habit of shouting "out Mama! Me out!" over and over until I release her. Of course then there's lots of running around and squealing loudly in excitement, to which I follow trying to shush her and explain about our "quiet voices" (yeah right!) 

This week we came home with (amongst others) a Peppa Pig christmas book and an In the Night Garden christmas book. It doesn't matter to Bee, if she sees Peppa or Makka Pakka she's sold! We brought another handful home too as well as all of the ones Mama chose!

New Play!

We've had some lovely new play experiences last week, starting with a visit to Warrington's new Play & Sensory Center. It's a purpose-built soft play center for disabled children and adults, which opened in the summer of 2012 after a lot of hard work by disability organisations in the town. We haven't visited before so when we got a letter from Bee's nursery a few weeks ago with a permission slip for a trip I was very excited! Happily the visit fell on a Wednesday so Foz was able to come with us. He misses so much with having to work so when the opportunity arises for him to be included I'm really pleased.

Last Wednesday morning was similar to lots of others recently: bitterly cold, strong wind and snow flurries. We'd booked on to the coach for the trip as Bee loved the recent journey to Underwater Street and doesn't get to travel on buses very often, it's almost an adventure in itself! She was very excited about this trip in particular as K, Bee's favourite teacher, was accompanying us. She'd been frantically using her hand sign for K all morning, wanting reassurances that she would be there.

After meeting at nursery we boarded the coach for the 10-minute journey to the play center. Bee loves to look at the window and is especially watchful for buses, even though all we mainly see are cars, houses and trees! Weirdly enough (considering where we live) there is a boat in a driveway on our journey to nursery from home, Bee always loves pointing that out. Thankfully by the time we arrived at our destination the snow had stopped and the sun was doing it's best to come out. No matter to us though, we were off inside for lots of climbing, sliding, jumping and fun!

Warrington Play and Sensory Center was wonderful! Bee has always loved soft play but has needed a lot of support moving around as she's not big enough to climb the structures herself and doesn't have the strength due to her hypotonia. I also find that Bee is best suited to the 'under 3's' section as she very gentle, can't yet run or jump yet we still get dirty looks from other parents are Bee is clearly over 3 years old. Yet she can't manage the big frame, both in terms of her ability and because the older children running and being rough is too much for her. We stopped attending soft play as it became too stressful. Warrington Play & Sensory Center is built around easy access and everything is at a height she can climb unaided. It's perfect for Bee, everything she needs, heights she can manage and no judgement from the other parents for using equipment that might be too 'young' for her. Even so Bee still wants an adult with her at all times and isn't yet moving off to play on her own or with other children. Generally she's happy to have myself or her dad by her side but for this trip only 'K' would do. Bee has a habit of forming strong attachments to certain adults and will stick like glue to that adult whenever she's around that. So far that's always been family members, namely my mum, Foz's mum and my Auntie Jane. 'K' has been the first person outside of family that Bee's become this attached too. 'K' was brilliant and happy to spend much of her time with Bee, even though I felt bad that it meant taking her away from sharing her attention with the other children. Still, they all had parents/carers there as well as the rest of the nursery staff so I suppose I shouldn't feel too bad.

The session was over far too quickly and, even though she was extremely tired, Bee did not want to leave. We had to deal with a small tantrum, which dissipated as soon as she realised we'd be getting back on the bus. We really enjoyed the new soft play center and would definitely chose there again over any other soft play locally. The small things, like Bee being able to climb unaided, make such a difference to the overall experience. It enables her to become more confident in her own abilities and not rely on us so much for support.

That afternoon we took a trip to the Trafford Center for a bit of a mooch around and a nice meal together. Bee loves to shop, it's one of her favourite pastimes and sometimes I worry I'm creating a monster. When she's a teenager and demanding the latest designer handbag or shoes I'm sure I'll look back at this time and curse myself. Still, just to see her charging up and down the aisles, helping fill the trolley and interacting with the checkout staff is worth it.

The Trafford Center doesn't really have much that interests us, it's full of fancy shops like Selfridges or brand name clothes shops. The main thing we visit for is Disney. No matter what interests come and go Bee still has a deep and abiding love for Mickey Mouse Clubhouse and especially Minnie.   

Before Bee's birthday last year we'd tried to buy a Minnie car mat (with matching Minnie and Daisy cars) from the Disney shop but sadly they'd sold out and we haven't seen them since. We tried other stores and online, nothing. So I was thrilled when we went in last week and found *just one* on the shelf. It wasn't the Minnie one but the Mickey but Bee loved it just as much. It turns out it was a return and the only one so we snatched it up, there was no way I was missing it a second time! 

Bee was very pleased with her new toy!....

We spent some time sat by one of the large fountains, having a drink and gave Bee some pennies to throw in. She didn't throw so much as gently push them in, she can be a funny thing. This particular fountain shoots a giant jet of water towards the ceiling every few minutes, which Bee loved....from a distance! Every time it happened she would back away from the fountain, scrunching her face up as if the water was coming at her, still with a big smile though!

 After the soft play in the morning, a lot of walking round The Trafford Center in the afternoon along with a meal Bee was exhausted. She began making that steady moan noise that we know means she's ready to give up. She had some cuddles with her daddy while we finished our food then we headed home. It was straight to bed for an early night!

Bee has recently discovered Baby Jake (from CBeebies) and has fallen in love, which we think is an extension of her love for dolls/babies generally. So a few weeks ago during a mooch round Toys'r'Us we bought Bee a Baby Jake board game. We haven't yet started on board games with Bee, they've seemed a little developmentally advanced, not to mention our struggles with Bee's attention span. However this Baby Jake game stated the target age at 3-5 years and the pictures on the box showed a game which looked reasonably easy for her to master and short enough not to become boring.

So one recent afternoon I got it out of the packaging and set it up. Bee was extremely excited and it took a few minutes to calm her before trying to explain how to play. The basic premise is to roll the dice and move your counter to the finish line in order to 'launch' Baby Jake's rocket. Getting Bee to roll the dice was the easy part, trying to explain that she could only roll once each turn was slightly more difficult. Then we couldn't stop her constantly trying to press the button that launched the rocket or picking up the counters to chew on them. Turn-taking is a skill Bee is still acquiring and I think it's going to take a little more practice before we really master the art of board games! 

Poorly Bee

I've got a very poorly Bee today, she's had a lot of sickness and pretty much just wants to cry. Towards the afternoon I was able to settle her with some CBeebies and her beloved Mr Tumble. Hopefully she'll pick up after a good night's sleep.

Mr Tumble

My little Bee has a slight (massive) obsession with Something Special on Cbeebies. When I say 'obsession', I really do mean that Mr Tumble occupies her every thought, every hour of the day. I'm sure she dreams about him. When smaller, Mr Tumble would be the only thing that would calm her during her bouts of extreme illness, even now sometimes only Mr Tumble will do. She can't yet say 'Mr Tumble' but can sign it with a vengeance. 'Mr Tumble' has become the standard answer to every question.

Do you want some toast?
"Naow", signs Mr Tumble

Shall we do some colouring?
"Naow", signs Mr Tumble

Do you want to go outside?
"Naow", signs Mr Tumble
 

You get the idea. She can be relentless and in her desperation to ask for Mr Tumble she sometimes ends up hitting herself in the face. Yes, incase you were wondering, I am a terrible mother and can't help but giggle when she does. Honestly Bee absolutely adores Mr Tumble. This adoration used to extend to the whole Something Special programme but just recently she's even started getting impatient with the 'Justin' parts of the show and will continually ask for Mr Tumble during the non-Mr-Tumble sections.

Mr Tumble

 For those without kids, outside the UK or living in a remote cave in the Himalayas - Something Special is BBC programme aimed at special needs children and is presented by Justin Fletcher and his alter ego, Mr Tumble. The programme teaches Makaton (a communication aid that's a little like sign language) in a fun and absorbing way. As it's educational for Bee I don't mind indulging her. We've always concentrated on introducing signs slowly with Bee, 3-4 at a time and always ones that are useful for her day-today routine, like 'more', 'yes' and 'no'. 'Hello' was one of the first Makaton signs she mastered, and was one we hadn't been teaching her. She learnt it from Mr Tumble. That man is a wonder beyond price.

Late 2010 we discovered that people were selling small Mr Tumble soft toys on eBay. Apparantely they'd been given away free with a copy of Cbeebies magazine that summer and were now selling like hotcakes on the web as the BBC don't actually produce any Something Special merchandise. It didn't matter what it took, I wanted one of those dolls. I 'watched' many on eBay but just couldn't justify the £30-40 they were going for. Crazy considering they were given away free with a £3.50 magazine. I persevered though and my vigilance paid off when I spotted a newly-listed one on a buy-it-now for £15.99. Yes please! I hit the 'purchase' button and didn't look back. I knew that no matter how much we spent on Bee that coming Christmas, this little Mr Tumble doll would be the most treasured thing she recieved.

Bee with her £££ Mr Tumble!

Fast forward to early 2011, only a few months after we bought the Mr Tumble doll (which went down a storm) and we find out Something Special is to have it's own magazine! Wonderful! Of course, what's given away free with the first issue? That same Mr Tumble doll I'd paid £15.99 (plus P&P) for! Still, the important thing was that Bee had one, regardless of how we'd come by it. We bought two issues of that initial magazine so we had spare Mr Tumbles, should anything happen to the original. Since then we've had a Something Special magazine each month, each time with a lovely little freebie to add to Bee's growing Mr Tumble collection. I don't see the obsession abating any time soon! So you can see why I was so over the moon with excitment when I discovered we'd won the tickets!

The show was to take place at the BBC's new MediaCityUK at Salford Quays (http://www.mediacityuk.co.uk/) in The Piazza, a large open space bordered by the BBC buildings. The FAQs stated that the show would be outdoors, with no seating and hopefully evoke a 'festival-type' atmosphere. With that in mind, we planned to get there early, well before the stated 11am 'doors open' time. Clare and Isla were coming with us and I couldn't have been any more excited!

The few days before I'd been racking my brain trying to think of something special to do for the girls and I eventually settled on making 'Mr Tumble' bowties. My sewing skills are pretty non-existant and I thought they would be simple and effective. With that in mind, on friday I headed to TP Textiles to make my fabric purchases so I could get home and get started.

I take Bee's walker everywhere now and encourage her to walk, which is unneccesary much of the time as Bee demands to walk. TP Textiles is on the first floor, so up we went in the disabled lift, with Bee pressing the buttons for me and shouting out an excited 'wheeeeee wheeeee' all the way up. After much browsing, umming and aahhing and deliberating over colours I finally made the purchases I needed. Bee had chosen that moment to throw a tantrum and refused to walk so I picked her up, grabbed the walker and started down the steps, back to the car. Reaching the bottom step I went over on my ankle and almost fell, managing to just about stay upright and keep hold of Bee. I dropped the walker as I stumbled and managed to lower Bee to the floor before collapsing on my hands and knees in a ball of agony. Bee, of course, thought it was all some kind of hilarious game and sat there laughing and signing 'more'. Very helpful.

After a few minutes of sitting alone in the small foyer at the bottom of the stairs I managed to lever myself to my feet and get myself, Bee and the walker to the car. It was extremely painful but not unbearable so I figured the pain would wear off through the afternoon and thankfully I drive an automatic so no problems in getting home. Through the 10 minute drive home my foot and ankle had started to throb and, once home, bearing my own weight was agony. I hopped to open Bee's door, lifted her out on one foot and placed her on the floor. There was no way I could carry her into the house. Thankfully now she is cruising so I managed to encourage her along the car, then helped her cross the gap between the back of the car and the front door step. I was home. Mission accomplished. But we had Mr Tumble Live the next day and it was a standing event. The timing couldn't have been worse.

When Foz got home a couple of hours later and the pain was getting worse I decided the best thing to do was head to A&E as I knew, although it was just a sprain, I could loan some crutches to get me through the Mr Tumble show the following day.

So, that evening, crutches collected and cup of tea made, I settled down to make the Mr Tumble bowties. I'd initially intended on sewing them but with my limited skills and rapidly diminishing time frame I decided to wonder web the lot. Even if they hold held together long enough to go to the show it was enough.

The following morning we had a very early wake-up call. The doors to the event opened at 11am and as there was no seating we wanted to be there mega early to make sure our girls got near the front. Unfortunately that morning had dawned overcast and rainy so it was a wrap-up-warm-and-load-the-pram-with-raincover kind of day. It's only a short journey to Manchester and traffic wasn't too bad with it being a Saturday. We arrived and met Clare and Isla in the multi-storey car park, got bow-tied up and and headed to the site.

Mr Tumble spotty bow-tie!

We were very early and there were approximately 10-15 people in front of us. Perfect! All we had to do was wait. Easier said than done of course, in the rain with two toddlers and me on crutches! We'd brought Bee's walker with us and for a while she contented herself with toddling about the huge open space with me hobbling beside her. Every so often she'd stop to say hello to someone, or point at the larger-than-life Mr Tumble on the side of one of the buildings. But then it would rain again so back into the pram she would go.

Finally the gates opened we made our way inside. We'd already decided that they should leave me behind and make a dash for the front, I'd hobble along behind. The early start was worth it: we were able to get a great vantage point! Then it was only another hour to wait. Unfortunately the weather chose not to co-operate and it tipped it down. Relentlessly. By the time Justin took to the stage we were soaked through.

Hello Mr Tumble!

That was all it took though: Justin taking to the stage, to make everything seem brighter despite the bucketing sky. The show was lovely. The first half was Justin as himself, doing some singing, skits of his various characters and generally interacting with the audience. There was a lot of cheering, clapping and screaming (and that was just the mums!) Bee coped very well, especially considering all the noise, although I don't think she really understood what was going on. Despite our best efforts to direct her attention to the stage she seemed to spend a lot of time watching the giant screen to the side of it. I'm not sure she really understood she was looking at the real Justin Fletcher and thought we'd just brought her to see a giant television! Justin even noticed Isla and her spotty bow-tie! He pointed at her and said "I like your spotty Mr Tumble tie!" Clare and I were thrilled!

Look! Mr Tumble!

Once the first half had finished the was a brief interlude from Rastamouse (another Cbeebies show) who performed a handful of songs from the show, then the second half, all Mr Tumble, began. Unfortunately it seemed like they'd turned the volume up during the interlude as when the voice over started with the 'MR TUMMBBLLLEE" Bee started to cry. It was just too loud. We tried to distract her by explaining Mr Tumble was coming but all we got was a very distressed "bam bam". Pram. It got slightly better as Mr Tumble appeared but Bee remained upset on and off. Thankfully the rain had stopped by the interlude and we were able to put away the umbrellas. Mr Tumble did lots of gags, slapstick and songs. It was lovely to hear the whole crowd singing the 'hello song' and 'goodbye song'.  

Afterwards we hung around, hoping to catch a quick smile, wave or even a photo from our beloved Mr Tumble. We knew there was a second show a couple of hours later but hoped against hope that he would make time for some of his little fans. After 10 minutes or so of waiting he walked past, talking to some assistants/crew. He would have walked straight past until Foz shouted "Justin can we have a picture?" He turned and started to say he was in a rush but then relented mid-sentence and acquiesced with a "a quick one then". It was so rushed that I hobble over on my crutches in time to get a decent picture before he was gone. What could have been our only chance to meet the wonderful Mr Tumble and it was gone in a flash. There was no interaction with our two girls, just a quick lean over the fence, a smile, then gone. I was bitterly disappointed. It happened so quickly I don't even think Bee and Isla understood what was going on, a real shame as the whole point of the trip was for them. In retrospect I understand he'd done a tiring show, was pushed for time and had everyone clamouring for his attention. But those things don't matter to two little toddlers who worship him.

Our 'blink-and-you'll-miss-it' moment

 Sadly that wasn't the only thing about the day that had been disappointing. Overall I feel the event had been very badly organised by the BBC. Something Special is a show aimed at disabled children. Now I know Mr Tumble appeals to all children but it shouldn't be forgotten that his core audience are children with a variety of abilities and needs.

My first issue is with the choice of venue. Outdoor with no formal seating made it a very difficult and uncomfortable experience. Our girls fall in that awkward area of being unable to walk but being too big to hold for too long. Yet they are too young to be considered for a wheelchair, which means they had to remain in the prams if they were not being held. Without wheelchairs we were not welcome in the sectioned-off disabled section at the front, yet being in the main part of the area meant the girls couldn't see in their prams. Which means we had to hold them. I know the weather was not the BBC's fault but anyone who's lived here more than a week knows you can never rely on sunshine in a British summer.

There was very few facilities at the venue. Outside the fenced-off area of the event there was a cafe in one of the larger buildings, with toilet facilities. However, once admitted into the show area there was no pass-outs and 4 portaloos along the edge. No baby-change or facilities to change a profoundly disabled child.

The sound was particularly loud, all coming from great big speakers at the front. I admittedly don't know anything about speaker systems and sound at concerts but I do know a lot of Mr Tumble fans will have sensory issues. Certainly my Bee does, and she just couldn't cope with the noise coming from those speakers. I couldn't help but feel it may have been better if the sound had been pumped at a lower volume from speakers dotted around, rather than so loud from one place. If that's even possible.  

All-in-all the show itself was wonderful but the overall experience of the day left a lot to be desired. For a TV show that's aimed at disabled children I didn't feel disabled children were catered for. Our disasterous meeting with Mr Tumble was just the icing on a very soggy cake. By the time we were being ushered towards the exit by security (in a friendly way!) the cold was starting to set in and my ankle was agony from taking my turn holding Bee and Isla. At least the rain had stopped.

It hasn't stopped us watching Mr Tumble though or abated Bee's adoration for him, that continues apace! Justin Fletcher is a wonderful presenter who helps change the lives of special needs children across the UK. His MBE is more than well-deserved. I hope one day we get a better chance to tell him in person.

For more information on Something Special click here: http://bbc.in/CoGbd

For more information on Makaton click here: http://www.makaton.org/