And So....

....tomorrow 'Operation Potty' begins

New Words

Gate (as in baby) = diit

Bethany = Bee

Aspiration Difficulties

Back in June I blogged about our experience at Bee's repeat video fluroscopy (http://bit.ly/sh76iW) and the results we were given by the speech therapist: we could start with puree consistency and thicker, but no liquids. Bee still aspirates liquids.

So we stuck to it. Kind of.

Bee still will not tolerate puree. She won't let me feed it to her and won't feed herself with it. So instead of starting with that we moved straight on to what the SLT calls 'bite-and-dissolve' food: sponge cakes/fingers, Wotsits, wafers etc. That went much better than the puree so we moved on to food that's easy to swallow like biscuits, crisps, bread, potato, pastry, crumpets etc.

So far it's going very well. Bee loves to eat and will try all kinds of flavours, we've found very little she doesn't like. For a child who's never really eaten she's surprisingly unfussy.

We've hit a little snag with her technique though. Bee can bite down on food with a straight up and down motion (although she prefers not to and will tear off small pieces to put in her mouth) but she hasn't developed the 'round and round' jaw motion involved with chewing food. She never eats anything that could be called a substantial amount, usually a biscuit's worth or a 1/4 of a sandwich, which is probably down to two reasons: we don't think she really understands the idea that the food is sustenance, more sees it as a type of toy or thing to play with and she's never hungry. As she's tube-fed regularly (every 3 hours) I don't think Bee understands the feeling of hunger, or that food can alleviate it. But we can't stop tube-feeding her as that's where she gets her nourishment and daily intake of goodness. So how do we solve the problem? Bee seems to be stuck in a limbo of wanting to eat but not moving any further forward with her technique and understanding of food.

Our problem is complicated by the fact that Bee understands that other people drink and she doesn't. She is constantly asking 'mama ah', which in Bee-speak means drink. It's the sound we taught her to make to pretend she was enjoying her cuppa during 'tea parties'. The guilt eats away at me and I'm dying to let her have something to drink, though I know that her enthusiasm doesn't change her body's inability to deal with liquid.

Bee's Dictionary Updated

Bee has a handful of new words, our favourite being 'knee'. She likes to come over, point at your lap and say "mama knee". Who can resist!?

Our word total is now up to 38, a massive achievement! 

*NEW*

Knee                                Knee

Nappy                              Da-pee

Shoes                              Sues

Boots                               Booo

Word                                Sounds Like

Yes                                  Yeah

No                                    Naow

Ta                                    Gaa

Thank you                         Guy-or / Guy-oo

Car                                  Bum bum

Ball                                  A-bawl

Monkey                             Ooo ooo

All gone                            Uh gnnn

Baby                                Ba ba / Baby

Hello                                Hey-yo / Hiya

Bye bye                           A-bye / Be bye

Dog                                 Uff uff
Food                                Num nums
More                                Moh

Bubbles                            Bu-bull

Door                                Dior

Up                                   Up

Keys                                Daa

Bag                                 Ba

Play-Doh                          Bawl

Bed                                 Ba

Chair                               Ka

Book                               Booo

Outside                           A-hide

Boat                               Ba

Me                                 Me

Pram                              Bam

People                             Sounds Like

Mummy                            Mama

Daddy                              Da-de / de-de

Grandma                          Gam-ma / Gram

Great-Grandma                  Noo noo
Great-Grandad                  Dee Dee
Clare                               A-Ka
Gem                                Dem


Makaton Signs
Yes
No
More
Book
Finished
Bubbles
Bed
Please
Thank you
Mr Tumble 

Who've also had another wonderful language development: Bee has gone from saying 'baba' to 'baby'! We're so thrilled with that as it's a real progression for her. Well done Bee!

International Kabuki Syndrome Awareness Day

Today is International Kabuki Syndrome Awareness Day, please help us spread the word.You can use this image on your Facebook/blog page or share the link to our UK resource, Kabuki Stars:
http://www.kabuki-syndrome.co.uk/

Alternatively please have a look at our friends around the world:
 

Supporting Aussie Kids with Kabuki Syndrome (SAKKS) - http://www.sakks.org/

Kabuki Syndrome Network (Canada) - http://kabukisyndrome.com/

Association Syndrome Kabuki (France) - http://asso.orpha.net/ASK/cgi-bin/

Japanese Kabuki Site - http://www003.upp.so-net.ne.jp/kabuki_j/

Kabuki Synrome Network (The Netherlands) - http://www.kabukisyndroom.nl/

A special 'HAPPY KABUKI DAY' to all the special KS families out there, I hope have a special time with your loved ones.

Makaton Monday

Partay!

Three has come around so quickly, it almost hit us by surprise. Practically overnight our baby girl has turned into a bright, happy, cheeky, demanding, crafty and tantrum-throwing toddler. Her understanding, speech and mobility is improving all the time and we're confident that it won't be much longer before she's catching her peers.

 
We wanted to spend Bee's birthday doing something she would love, which meant soft play, soft play and more soft play! We chose a sensory play centre about 40 minutes away from us. The pictures on the website looked really good and (as we wanted to take advantage of the last of this summer's sunshine) we planned a picnic in a nearby park for afterwards. So with my mum, brother in tow we set out to meet Clare & Isla.

Photo courtesy of http://www.dfosterphotography.com/index.html

Unfortunately the soft play we'd chosen wasn't as good as the website suggested and it was a long way to go for something that we could have done on our doorstep but our girls had a great time anyway. 

Photo courtesy of http://www.flickr.com/photos/gimbulate

 After an exhausting play session (for the adults!) and a slight detour (thanks sat nav!) we went for dinner at a local park. Thankfully the sun was shining and we found a nice shady place under a tree and by a lake. We munched on sandwiches, crisps, cakes and chocolate.... with some token apple slices and grapes thrown in.

Photo courtesy of http://www.dfosterphotography.com/index.html

 

 

 


 
Each year we have promised ourselves that the next birthday Bee will be able to have some of her own birthday cake. And this year we were finally able to keep that promise! On her third birthday Bee had her first slice of birthday cake!

And it went down very well!

Especially the icing! I think my girl has a sweet tooth!

Isla was also very impressed with her slice of cake and even had a good go at helping Bee with hers. Then they both had a go at each other's soggy leftovers. Lovely!

 

 We finished the afternoon with a walk through the park, Bee on her walker and Isla with Bee's new baby pram. Both girls are doing so well with their mobility. At one stage I could never have imagined walking through a park with my girl walking next to me.

To see her now, so independent and confident, makes me marvel at her strength of character. She inspires me every single day.

Happy Birthday!

Today is Bee's 3rd birthday. It's such a cliche to say that time flies but it really does.

Three years ago today, at 5:12pm, I was being delivered of a tiny bundle that would change our life. Bee had a difficult start: SCBU, feeding problems, breathing problems and even when we got her home she was still in and out of hospital with illness. She missed milestones and we despaired, confused doctors with her undiagnosed problems and still managed to melt everyone she met with her constant smile, curly hair and big brown eyes.

Two years ago today we were throwing a big party in honour of that first difficult year coming to a close. We had answers and medical interventions and life was finally becoming slightly easier. Bee couldn't sit unaided, much less toddle about like others her age but she still tackled every challenge thrown at her with aplomb.

One year ago tomorrow Bee was crawling, making sounds that sounded suspiciously like the beginnings of words and understanding more and more of what was going on around her.

Now, as she's turning 3, Bee has a vocabulary of over 30 words, is flying on her walker and has impeccable manners. She charms everyone she meets and grows in confidence every single day. We still have challenges with feeding and some sensory issues but after her severe developmental delay the fact that she's almost caught up with others her age just blows me away.

Today we spent a lovely day at a soft play centre then a picnic in the park in the glorious sunshine. Bee's Grandma and Uncle Chris came along, as did our lovely friends Clare & Isla. We've had lots of family around to visit and Bee has been spoilt with cards and gifts so thank you to everyone for your thoughtfulness.

Happy 3rd birthday Bethany May.

We love you all the world xx

Playdate

We got to spend an afternoon with Bee's best friend Isla this weekend.We shared cuddles, giggles and lots of cake!

Mmmmmm crisps!

My little Bee managed to wheedle her birthday present out of Clare early. Although, if I'm being honest, it was more at the urging of a rather over-excited Clare! And what a wonderful birthday present it was!

 

Bee is in love. Tuesday she had to take her new bag to nursery with her, along with her little 'Mi Moo'.

We finished our afternoon with lots of cake and a lovely time was had by all!

Yum yum!

A Walk in the Park

This weekend Bee and I spent a lovely afternoon on Sankey Valley Canal with my Mum and her dogs. The sun shone down and, despite the dogs, Bee did lots of walking. Her confidence around them is getting better, although she's still very afraid if they come too close and hysterical if they bark.

We did lots of walking and helped Bee collect found objects to put in her little In the Night Garden tin. It's a great game to help combat her tactile defensiveness.

That may well have been the last of the meagre sunshine for this year so I'm glad we got out and enjoyed it!

Nursery

Well, we've done it! Bethany has survived her first session at nursery. And her second, third and fourth! Equally as impressive: I survived them too!

Heading into nursery

Her first session was only an hour long and my Mum and I, who I had took along as Foz had to work, were able to stay. Bee was able to play with the nursery assistants while I did a lot of form-filling and boring stuff like that. Every so often Bee would come scooting over with her walker, just to check I was still about then she'd scoot off again, eager to find the next new toy! It was a lovely session, the nursery introduce one child at a time so we had the full attentions of the staff while we were there. They were able to start getting to know Bee and we were able to get to know them, very important for a parent like me who's never left her child with a stranger.

The nursery is wonderful. It's a long, low building split into 3 sections. At one end is the private nursery, in the middle is the mainstream nursery and at the other end is the special needs provision nursery. Bee's nursery is split into two rooms: a carpeted room with the main bulk of toys plus a kiddie play kitchen, reading corner and such. There there's the craft room with lino floors, tables and chairs plus my favourite part: an interactive projection on the floor that responds to the childrens touch. There's also a dedicated sensory room that the children have free rein of and an outdoor area that is completely covered from the elements and has sand & water tables, ride-ons etc. Each of the three connected nurseries has a similar garden of their own and all three open out on to the main garden, which runs the length of the entire building. It's a massive expanse of grass with winding pathways marked out like roads and, in the middle, a giant sand pit with a huge play structure. In the back corner is a small, innocuous-looking shed which turns out is the 'den-building shed', full of chairs, sheets, brooms and other vital den-building supplies. What more reasons do I need to love this place!?

Our hour seemed to pass very quickly and by the time it was up Bee was not ready to leave, I had to bribe her out to the car with promises of Mr Tumble when she got home!

The second visit was scheduled to be a longer one, an hour & a half in length and this time there were other children there. I was supposed to leave her for a short time during the session but only as far as the staff room for a cuppa, just far enough that she couldn't see me but I was still on hand incase she got hysterical. There's one-way mirrors so I was able to watch what Bee was up to without her being able to see me. Turns out she had a blast and barely noticed I was missing. I was so proud of my confident little girl although a small treacherous part of me felt a little disappointed that she hadn't cried and clung like a limpet around my neck.

That second session went so well that I was actually quite looking forward to the third, her first full 3 hour session when I would bite the bullet and go home. Although her behaviour so far showed all the signs that I wasn't going to have any problems. So I was surprised when we pulled into the carpark and Bee started to cry and say "no" over and over. Here was what I had dreaded: guilt-inducing hysterics on nursery drop-offs. She wouldn't walk into nursery, wouldn't take her coat off, wouldn't allow me to put her down, wouldn't look at any of the toys.... here was my disappointment about not feeling wanted the week before coming back to bite me in the ass. After a few minutes of crying and telling me "no, home" I managed to encourage Bee to sit next to me by some toys. One of her teachers came over to play with us and as Bee's attention turned slowly from me to her I managed to sneak away. By 'away' I mean outside of the room to sit and watch her through the one-way mirrors. It took all of 20 seconds for her to notice I was gone and the hysterical crying resumed. This time interspersed with "mama home". Oh the guilt.

I've never felt anything like it, like I was abandoning her. Even though I would only be in the next room I kept thinking how it must appear to Bee: like I'd just left her with complete strangers and not coming back. What a bewildering experience it must for children when their parents drop them off and walk away.

Thankfully Bee's teacher managed to calm her down with a variety of distraction techniques and I went to sit in the staff room with a fortifying cup of tea. Every so often someone would come in and let me know that she was ok and play with this toy or that toy or, at one point, in the sensory room. Occassionally I would sneak a peep through the one-way mirrors at what she was up to but I tried to keep this to a minumum. Bee had settled and was playing happily, I needed to do my own version of the same. It was decided between myself and the staff that we would shorten Bee's time at nursery for that session, give her the chance to realise I would come back and not leave her there. She was all smiles when I appeared, shouting "mama" and showing me the doll she'd found to play with. What a wonderful feeling when your little one is so full of excitement from their day, makes all those tears worth it. So although not a completely sucessful third session it finshed better than it began.

The day of session four dawned and I tried to prepare Bee early, so when we started getting ready for nursery it wasn't a shock. "We're going to nursery today honey, going to play with all the toys..." etc etc. Each time I mentioned it I got a very firm "no", not a good sign. Still, it had to be done. So 12:30 found us pulling into the nursery carpark. There was no tears this time although a lot of "no" in a distinctly wobbly voice and she wouldn't walk either, had to be carried in. We had the same battle over getting her coat off, by the time I succeeded you'd have thought hanging a coat on a peg was the most exciting game ever!

Bee's teacher took her hand and led her into the room, moaning though she was at least it wasn't outright hysterics. I followed them in as Bee kept checking I was behind her, I wanted her to settle before I left. It wasn't long before she was engrossed in the toys so again I snuck away. She began to cry when she noticed I'd gone but it only took a matter of a minute for the staff to settle her and she was happy again. This time I felt secure enough to leave her, so I came home for a cup of tea. The staff had assured me that they would ring if Bee became too upset and we agreed I would return after an hour to check on her and see if it was suitable to leave her for the remainder of the 3 hour session. When I popped back I could see though the one-way mirror that Bee was quite happily playing with the toys and chattering to herself so, without letting her see me, I snuck away again and returned home for the remaining hour, comfortable that she was being looked after and not distressed at all.

Our next session is tomorrow and I'm hoping that Bee continues to improve on the drop-off. I know she loves the time at nursery - this past saturday she specifically asked to go, she just needs to get over that initial separation anxiety. I think her nursery is going to be a wonderful place for Bee to grow and develop. Their facilities are second-to-none and the staff are so supportive and inclusive. The children from all three nurseries get to spend time together through the sessions so Bee will get to mix with children of different ages and abilities. I'm so excited about the next two years she will spend there.

Makaton Monday

Mmmmmm cake! In two days time it will be Bee's 3rd birthday and we can't wait for her to have her first taste of birthday cake this year!

Makaton Monday

Bee likes to give her pennies to the person at the till when we go shopping. She doesn't really understand the concept of money and paying for things yet but I think it makes her feel important and involved to take part in the shopping.

Makaton Monday

Minnie Mouse

Bee has a new word:

Cutest. Thing. Ever.

Makaton Monday

One Week and Counting...

Today marks one week until Bee starts nursery.

Feeling: apprehensive, nervous, excited...

In so many ways next week can't come quick enough but I could wait forever. I've never left Bee with anyone who wasn't close family and so the thought of leaving her in the care of complete strangers is terrifying. Even if it is only for 3 hours twice a week. I know her quirks and foibles, her likes and dislikes, her tolerances and what she means when she's only making sounds. What if the staff don't understand her? What if she's unhappy? What if she doesn't make friends? What if she's left out or left behind?

Despite my worries, every day it becomes more apparant that Bee is ready for nursery. In part I can't help but feel she's being held back by being at home with me all the time. There's only so much I can teach her before she needs the interaction, encouragement and friendship of her peers. Even in group speech therapy she dives right in and doesn't look back, watching the other children intently and pushing herself forward to be included.

I'm so proud of her, of her confidence and willingness to join in but my heart aches at watching her leave the baby years behind and I just want to cling on and not let her grow up. Then I remind myself that if I did that I'd be missing out on all the wonderful things to come. Her first school play, learning to ride a bike, doing homework together, first boyfriends (despite what her Daddy says!) and those special Mother/Daughter moments that I cherish so much about my relationship with my own Mum.

I don't want to be a Mum that holds her child back because I'm scared of losing the special little person she is now. Instead I'm going to watch her run from me into the next stage of her life and I'm going to smile and wave and encourage her to go. I might cry but my tears will be short-lived. I'm going to love every second of watching her grow.

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/

Bee's Dictionary Updated

Bee is gaining new words slowly but surely and we have some new ones to add to the pile...

*NEW*

Me                                  Me
Pram                               Bam

Word                                Sounds Like

Yes                                  Yeah

No                                    Naow

Ta                                    Gaa

Thank you                         Guy-or / Guy-oo

Car                                  Bum bum

Ball                                  A-bawl

Monkey                             Ooo ooo

All gone                            Uh gnnn

Baby                                Ba ba

Hello                                Hey-yo / Hiya

Bye bye                            G-bye / Be bye

Dog                                  Uff uff
Food                                Num nums
More                                Moh

Bubbles                            Bu-bull

Door                                Dior

Up                                   Up

Keys                                Daa

Bag                                 Ba

Play-Doh                          Bawl

Bed                                 Ba

Chair                               Ka

Book                               Booo

Outside                           A-hide

Boat                               Ba

People                             Sounds Like

Mummy                            Mama

Daddy                              Da-de / de-de

Grandma                          Gam-ma / Gram

Great-Grandma                  Noo noo
Clare                               A-Ka
Gem                                Dem


Makaton Signs
Yes
No
More
Book
Finished
Bubbles
Bed
Please
Thank you
Mr Tumble

Makaton Monday

Marching On

Yesterday morning we attended Bee's weekly group speech therapy session. As usual she scooted through the door with her walker and didn't look back shouting 'a-bye mama' all the way. I rescued her discarded walker and left her to sit with the books while waiting for the session to start. Every so often she would look up and say "mama? Boooo". Mama, book. Beautiful.

As the session started she scooted her bum towards the therapists, ready and eager to join in. The sessions can be a little overwhelming for Bee, she's never done structured group learning and here the other children are older, mobile and much more boisterous; shouting out answers and bouncing around. She tends to sit, wide-eyed and slightly open-mouthed, watching all the goings-on around her and taking everything in. Although the SLTs do take turns with each child, giving them an opportunity to interact.

Yesterday's session seemed a little different. Bee was a little more confident this time and joined in a little quicker. Sporadically she would turn to me with a big smile on her face but it was fleeting, her attention soon turned back to the myriad of toys coming out of the SLTs bag and the other children clustered around them.

Then it hit me, right there in the session: I was looking at my little girl as she will be at nursery, only two weeks away. Eager, alert, a little apprehensive but willing to try new things and join in. My heart ached to look at her, ached with love and a sense of loss for that little baby that is melting away right in front of my eyes. But most of all it was pride at the confident, strong and cheekily infectious little girl that is emerging from the cocoon.

Every day I feel overwhelmed with love for her

Every day she makes me proud of what she achieves

Every day I dread that inevitable march towards adulthood

And every day I look forward to the person she'll grow into along the way

I love you my beautiful little Bumblebee

Love and sloppy kisses (coz they're the best kind)

Mama xxx

Space and Steam!

Last week we visited The Space Centre with Families United. It's a multi-sensory centre for special needs children and we had a wonderful time!

Bee loves soft play anyway but when you throw in some funky lights, bubble tubes, sensory wall and a great big slide, she was in playtime heaven!

The moment she got a peep through the door the the centre beyond she wanted to be away. She wriggled so much to be off and playing that it took me a minute to get her shoes off!

Once in she wasn't still for a minute and headed straight for the bubble tubes, discovering a box of musical instruments on the way. Of course, she had to give them a good nibble but then made some lovely music with the shakers.

We climbed the padded stairs and tried the slide, although she would only go down with Mummy or Grandma, never solo. Bee has never been keen on slides. She's always struggled to hold herself in a sitting position and seems to be afraid of lying down on one. Still, with Grandma or Mummy holding on it's much more fun!

Bee's favourite has always been the ball pool. She loves to sit in them, throw the balls around and shout "ba!" Today was no exception. It was a very deep pool, she got a little overwhelmed every time she started to sink and would ask to be taken out. Consequently we spent a lot of time in-out-in-out-in-out of the ball pool. 

That's a girl having a good time

Sadly our session was only an hour and it passed way too quickly. At the end I don't know who was more tired: myself, Bee or my Mum!

We'd already decided to go on and do something nice after Space, so we spent our afternoon on the Ribble Steam Railway. It's a little gem tucked away near the marina in Preston with a lovely steam train journey, museum, workshops and cafe. Your (very cheap) admission price gives you unlimited train rides and access to the museum and we got an even better bargain as Bee was free and my Mum and I got in for the 'carers' price! Win!

I've never been on a steam train before and I wasn't prepared for how much I would love it. The smell of the steam, the sound the train made, it was a wonderful experience. Bee seemed to enjoy it too. She knocked on the windows, waved at the pedestrians we passed, pottered up and down the carriage using the walls for support... it was brilliant to watch her enjoy it.

Enjoying the view with Grandma

The journey was a lovely one, winding past the marina and running parallel to a river for a mile and a half before returning the same way. Bee managed "ba" for boat but train has proved a little more elusive for her. So far "bum bum", meaning brum brum, is as far as we've got. The 't' sound of train is something Bee has mastered yet though, most of her words are 'soft' sounds like 'b, m, p', she has very few 'hard' sounds.


We had enough time before they closed to have two journeys on the train. The first we spent in a carriage at the back of the train where Bee enjoyed standing on Grandma's knee and looking out of the window. I tried standing at the open window with her but she became a little agitated by the feel of the passing breeze on her face.

For our second trip we tried the 'Harry Potter' carriage: the posh little compartments further down the train. It was actually quite exciting, really like travelling in a by-gone age. Bee was happy sat by the window for a short time but her inquizative nature got the better of her and she was off the seat and cruising towards the door. Interested to see how confident she would be walking down a moving (and unfamiliar) train I opened the door and let her go for it! There was no stopping her then, she made it all the way down the carriage by following the walls then onwards through the next carriage to the end of the train! Success! Not only a fair distance to walk with only the wall for support, but on a moving train too! After that it was a breeze for her to walk back and forth, back and forth between the compartment and the end of the train, with a little door-playing in between!

Waving to Mummy

So all-in-all it was a fantastic trip out and my little miss was all tuckered out by the end of the day!