It's Finally Here

Well tomorrow is the big day, Bee is starting school. It's the ultimate cliche but I can't believe the time has passed so quickly. It seems only yesterday we had the summer stretched out in front of us and now school has crept up to surprise us and I'm not ready. I'm not ready to let her go.

For nearly 5 years it's been just me and her, while her Daddy works I've been the one at home. She's my kid, my star, my monster, my Bee, my everything. I've seen every moment of development, every achievement she's made from the small to the huge. She's my constant companion and my best friend. Spending these precious years with my Bee has meant everything to me.

Tomorrow everything will change. Things will never be the same once morning dawns and school beckons. Tomorrow marks the day Bee will start making large strides away from the security of my side to the uncertainty of the wide world. We'll have weekends and holidays but no longer will we have our little daytime world of two. From tomorrow a complete stranger will have care of Bee for more hours a week than I will.

The house is going to seem so empty without her little voice. I'll miss the constant "mama, mama, mama, mama, why, why, why, me too, what you do?"

Foz tries his best to be supportive but I think it's harder for him to understand as not much will change on his end. Bee will be here as he gets home from work as always and they'll have their weekends together.

I'm worried about how she'll cope. I'm worried the days will be too long for her, I'm worried she'll get knocked over and picked on, I'm worried she won't cope with the lessons, I'm worried she won't sit at mealtimes, I'm worried, I'm worried, I'm worried... 

Aside from the worry (and the self-pity) I'm very excited about the challenges that lie ahead for Bee. I know that no matter how difficult or prolonged the 'settling in' period is that eventually Bee will loved school as she loved nursery. I'm excited about some of the things Bee's new teachers have planned for her and I'm very confident in all of them and their ability to help Bee thrive. 

 

The first day of school marks another milestone in my Bee's life and already she has achieved so much more than we could have dreamed. She makes me proud every day.

I love you Bethany May and wish you so much joy and happiness in your new adventure xx

Sad Goodbyes

Well it's finally happened. Bee has left nursery.

Bee started at Sandy Lane two years ago, still a baby and overwhelmed by everything about such a new environment. It took her a long time to settle and not cry at every drop-off. Yet despite the inauspicious beginning, she thrived there. The facilities and staff were incredible, as proved by there repeated 'outstanding' OFSTED reports. By the time her second year rolled around I couldn't drag her away. We've had so many wonderful times there, from farm trips to Sandy Lane's very own Forest School...

 

Sadly Foz had to work on Bee's last morning so my Mum and I collected her at the end of the nursery session. We'd prepared handmade gifts for all 11 of her teachers and it was an emotional goodbye with more than a few tears from all of us. Nursery gave us a lovely folder with lots of pictures and text about all the things Bee had done over the last two years, it's very special as parents don't get to see what their children get up to otherwise.

After leaving nursery my Mum and I took Bee to McDonalds for her favourite treat of chips! She's so spoilt!

I can't speak highly enough about Bee's nursery. The difference her from the baby she was to the little girl she is now is in large part down to their wonderful care and support for us a family.

Thank you Sandy Lane, we are eternally grateful. You have done a incredible job preparing my girl for the next stage in her life. We'll miss you and Bee misses you. Every time we drive past she says "mine" and signs 'nursery'.

The Decision

Last week was a crazy one. It was my 30th birthday on the Tuesday (which I spent in Wales with Foz and Bee - more on that in another post) so literally every day that week was spent visiting various family members to celebrate the big occasion. Friday brought one of our favourite events of the year: Magic Weekend. 14 Rugby League teams, 7 games, 2 days, 1 stadium. It's always amazing! Before I dropped Bee at her grandparents on Friday afternoon I needed to get our packing done and do a little bit of shopping.

At nursery that morning Bee's teacher had asked if we'd heard back from our school appeal yet, which we hadn't. It's been over a month and I'd rang the council a couple of times and left messages but still nothing. Bee's teacher assured me it shouldn't be anything to worry about, the council seem to be behind in the statementing process with a lot of families.

So Friday afternoon brought me mooching around Tesco with Bee, picking up some bits for Magic Weekend. My phone rang and I answered it to find someone from the Inclusion Team at Warrington Council on the other end. Firstly she apologised for taking so long to get back to us. She went on to say that after reviewing Bee's proposal statement and our appeal the council would be happy for Bee to attend Bewsey Lodge Primary School. What!? WHAT!? I had to ask her to say it again. I never once thought that we would receive our answer over the phone like that, I'd expected her to confirm when we'd receive a letter with the decision! The woman went on to say that the proposal statement would be amended and sent out to us soon to confirm. I ended the call and stood for a moment in the bread aisle of Tesco, unbelieving. Then the tears came. I was so happy, so very happy. I hadn't realised what a weight it had been, the waiting for an answer.

So there it is: in September Bee will attend a mainstream primary school in a supported class. We're so thrilled! 

The Wait Is Over

It's finally here. I've been dreading and looking forward to the day in equal measure for months.

Bee's statement arrived yesterday morning.

I heard the big thud on the doormat when the postman arrived and I just knew what it was. We were not expecting any parcels and the only thing that would make that kind of noise is a great big envelope full of a great big report.

It's been about a year since this process was set in motion and each month that's passed has been a worry. What type of school is right? What if we can't choose? What if she's not happy? What if she doesn't cope? Will she get bullied? The worries just go on and on and on. Based on the copies of reports we've seen from Bee's medical professionals I'd convinced myself that the council would recommend the local special needs school. Which would be the worst possible outcome as we've decided we'd like her to go to a mainstream school with designated provision for SN children. For the last few weeks other parents at nursery have been talking about the statements starting to come through and I've been dreading that thud on the doormat. Would we get what we wanted? What if we didn't? Would it be right to fight it?

As I picked up the A4-sized brown envelope I noticed the Warrington Borough Council stamp and knew what it was. I deliberated whether to open it. Bee and I were getting ready for a day out with Uncle Stu and I knew I wouldn't have the time to really digest it before we had to leave. But knowing the council's recommendation of school was just a thin envelope away I couldn't leave it unopened and skip off out for the day.

I ripped it open, a little daunted by the thickness of the papers within, hoping that I wouldn't have to scan for too long before I found their recommendation. Thankfully I found it at the bottom of the opening letter, very convenient. As my eyes took in the words my heart sank: "I can indicate that the Local Authority currently recommends that the appropriate provision to meet your child's special educational needs will be at Green Lane Special Needs School."

Devastated.

So what now? I read on and discovered that this is a draft statement. They've included a form for us to fill in where we can "make representation regarding the information contained in the proposed statement" or complain, to put it in layman's terms. It also includes a box where we can specify the school we prefer, which we've already done in the report we sent for the draft statement to begin with but they didn't seem to take much notice then. Not a good sign. I sent Foz a text message to let him know and finished getting ready for our day out. The rest of the statement would have to wait.

We had a lovely day out with Bee's Uncle Stu, which I'll do a separate post on over the next few days. The sun shone down gloriously for what seemed like the first time this year. We ate good food, looked at beautiful homewares and plants and Bee spent a ton of time on the park.

Back at home the statement beckoned and I sat down to read it through properly. I was surprised to find that the statement itself was only a small handful of pages. To be honest it was smaller than the *ahem* large report I'd sent towards it. The bulk of the envelope was copied reports from Bee's medical professionals they'd used to write it. Which was useful as it allowed me some insight into the process they'd gone through to decide Bee's educational fate. These people who make this decision will never meet Bee. They will never know my daughter as I do. They won't even know her as her therapists and medical professionals do. A panel of people will read reams and reams of paper about what she can and can't do and they'll make a decision based on those pages. Even if there's a challenge to the decision and possibly even a tribunal, they still will never meet her. Only us, if it goes that far. The whole process seems a little crazy to me, the people who ultimately make the decision are no better than strangers.

As I read the statement, listing what Bee could and couldn't do and what the school should provide, it occurred to me that I didn't disagree with anything in it. Everything they've said about Bee is right. But the conclusion they've come to is clearly very different to ours. I moved on from the statement to the reams of reports that the panel had used. Most I'd seen before as we're automatically copied in on reports anyway, the one we hadn't was the educational psychologist's final report. As I blogged about back in May 2012 (http://bit.ly/KFskPi) the educational psychologist has always been very accurate about Bee's abilities, even if it's hard to hear sometimes and I trust her judgement. This final report was very similar to the draft ones we'd seen through the previous 12 months but it was still tough to read. The content of the report, with the words "severe needs" all over the place had us both questioning our decision to go for mainstream with designated provision. Were we wrong?

Foz and I have both read through all the documents sent with Bee's statement and spent last night discussing them at length. Do we agree with the reports? Are we pushing for a mainstream school because we don't recognise the severity of Bee's needs? Are we pushing for mainstream because we preferred the school rather than because it's more suitable? Are we being unfair on Bee and pushing her too hard by pushing for mainstream? Are we being unfair on Bee and not giving her an opportunity by agreeing with the council's choice? We agonised over it. Really agonised. Never have we faced a choice that we've struggled so much with. And we only have 15 days to lodge our complaint, should we choose to make one.

After a long discussion and not a little soul-searching we came to the same conclusion: we're going to push for a mainstream school with designated provision. It may seem a little like we're completely ignoring the health professionals (who surely know best) but we feel in our hearts that we're doing the right thing by giving Bee a chance to shine in an environment more challenging for her. With a designated provision (DP school) Bee will be a small class of approximately 8 children, with 2 or 3 members of staff. There will be progress reviews every 6 months that assess how well she is coping and the minute she isn't the staff or ourselves can request that Bee move to a school more suited to her needs. Of course this in itself is a worry, Bee doesn't like change, but we feel it's worth taking the chance. In a DP school Bee will be surrounded by children at almost every level of ability and will have ample opportunity to model learning, play and behaviour. A huge part of our decision is something that not a single one of the health professionals touched on in their reports and so something the council will not have taken into account: Bee thrives when with children either older or developmentally further than she is. If you put Bee with a group of children like her she won't interact, talk to them, play with them. But with children who can 'lead' the interactions she happily moves away from us and copies their behaviour. Opportunities for her to do this is really important to us.

So what next? The council seem to be coming at their decision from a different angle to us, which of course is unsurprising as they don't know or care about our daughter in the slightest. So now our job is going to be challenging their decision. We've a form to fill in where we can "make representation" about disagreement with their choice, which I think means explain why we disagree. We can also name the specific school we would like. we have already done this so I'm not hugely hopeful that the council will listen. If they don't agree with us they will go ahead and produce the final statement, at which point if we decide to persue it we'll have to go to a meeting/tribunal to make our case. The thought of that is a little daunting but we're prepared to fight for our girl and what we believe is right for her.

 

Why?

One of Bee's main challenges is her lack of language skills. A little while back when I collected Bee from nursery a member of staff mentioned they were really pleased as Bee had used a couple of words they hadn't heard from her. They then went on to say that she was now up to a handful of words she was regularly using. Which was great, except at home she was using dozens...

So over the Christmas break, while she was with me all day, every day I decided to make a list of the words she was using and how she was pronouncing them. I'd lost track of my old lists when she hit 50 words and it concerned me that, although we knew she could use a lot, nursery wasn't hearing them from her. By the time nursery started again in January my list had over 90 distinct words, yet within nursery she was only using 5/6. Of course, nursery isn't unique: Bee doesn't talk much at all outside of home, regardless of where she is. She especially doesn't do well if put on the spot. I decided to keep on with my list, adding to it whenever I heard a new word from Bee. We're now up to 143. Compared to the average toddler milestones (a 2-year-old should be at around 200-300 words) Bee is still quite a way behind but she's progressing and her language seems to be on a steep learning curve at the moment. The words can still take a little deciphering though: "ba" could be bath or bag and we rely a lot on context.

My favourite at the moment is "pi pi dee dee" for Peppa Pig DVD and I'll always love the way she calls Mr Tumble "beebul".

In the last two weeks she's found a new word which was thrilling at first and now I just want to gag her. This was a conversation earlier today:

Bee: "Mama, Pi pi dee dee"

Me: "Not at the moment"

Bee: "Why?"

Me: "Because we're going to get Daddy from work soon

Bee: "Why?"

Me: "Because he's been working all day and now it's time for home"

Bee: "Why?"

Me: "Because Daddy needs to go to work to earn pennies"

Bee: "Why?"

Me: "So we can pay our bills and buy nice things for Bee"

Bee: "Why?"......

.......and on it goes. And on and on and on. I don't really have any experience of it (Bee being our first) but I feel most kids would reach a natural stopping point when there's no longer a reason to ask why. We don't get that with Bee. We get to a point where we go round in a question/answer circle as there's sometimes just no answer for "why".

It's a wonderful development, we're genuinely thrilled that Bee has reached a level of curiosity about the world and the things going on around her, enough to ask about them. However she does have a habit of being very, very repetitive. We often have the same conversations and the same seems to be true of "why", it comes after every single statement/comment/answer we give. Earlier today we had a conversation that went like this:

Bee: "Mama, play doll"

Me: "Of course we can play dolls honey"

Bee: "Why?"

Me: "Well, because you asked to"

Bee: "Why?"

Me: "Well I think because you want to play dolls"

Bee: "Why?"

Me: "Because you like your dolls"

Bee: "Why?"....

....And so on. Sometimes I think she asks as a matter of routine, rather than a genuine curiosity as to the answer. The above conversation doesn't seem to make much sense as she's asking me to explain why she wants to do a certain thing. Still, Bee asking "why" all the time is opening up more conversational opportunities with her and we don't seem to be stuck as much in the same topics that she will normally stick to. Which can only be a good thing!

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! 

Underwater Street

Having a drink on the coach

We went on a nursery trip to Underwater Street in Liverpool today, a play and activity center.

Bee has been showing a lot of interest in buses recently and when she sees one asks "boo rye mama?" - bus ride mama? We've not had the opportunity recently so she was very excited today to be going on a coach. We had to meet at nursery first to be organised into groups and have the required safety talks but soon enough it was time to leave. Bee's nursery had about 90 children on this trip so it was a little like organised chaos with lots going on plenty of noise. I was a little worried about how Bee would cope but she did champion.

After a half hour coach journey we arrived in Liverpool and Bee was very ready to get off the bus, she hadn't enjoyed admiring the beautiful Liverpool architecture as I had! Underwater Street is right on Liverpool Docks, in the building next to the famous Liver Building, in the lower level.

Bee was very happy to see lots of boats floating in the docks and it's occurred to me that a trip around the docks on something like The Yellow Duckmarine might be a good idea, or maybe even the famous Mersey Ferry!

On arrival we congregated for another quick safety talk and then the children were all turned loose to play. It was like setting off a bomb, kids fair exploded out of the meeting and scattered far and wide across the center. Bee was so beside herself with excitement that she couldn't decide what to do first. I knew there was a pretend shop so I led her in that direction.

Bee loves to shop, she had a ball. She even, without prompting, interacted with the little girl manning the till and they packed Bee's shopping together!

As much as she loves shopping Bee couldn't maintain her focus on the one activity for long, there was just too much to do! Next it was on to the small ball pool with the diggers, then the water play, the sand pit, the dressing up.... it was crazy but so much fun!

We stopped in the middle of the trip for a bite to eat and a breather. Recently Bee has been enjoying raw carrot and it's lovely to see her munching away on something that, not so long ago, it would have been unimaginable for her to eat.
 

In the dressing up room Bee chose a lovely sparkly dress then proudly wore it round the center for the rest of the session. I was a little worried about whether she'd make a fuss about taking it off but she was a star.

She had great fun in the water play, pouring water from container to container and then into a water wheel, she spent by far the most time here.  

Water play

It's me!

One of my favourite moments was watching Bee discover herself on the TV in the 'newsroom'. She would see the back of herself on the TV then turn to find the camera, before realising that if she did that she couldn't see herself! It was very funny and very cute!

Painting a passenger window

In Underwater Street there's also a Mini, a full-sized Mini car. It's in it's own section and it's for painting on. Clearly the staff don't clean the painting from it that years of children have done and so it's a wonderful, multi-coloured, car-shaped blob that kids can paint all over. It almost blends into it's surroundings there so much paint everywhere! Bee loved it!

By the time the session was over Bee was more than ready to go home. She's been ill recently and so much activity had really tired her out. It was harder to get her interested in the view out of the windows on the way home, she mostly made her tired, moaning noise and chewed on her Peppa Pig toy. By the time we reached Warrington and then made it home poor little Bee was falling asleep. I put her to bed early, just after 5:30pm and she was out like a light.

We had a wonderful day and Bee coped much better than I thought she would with all the children, activity and noise. She joined in with painting, making, building and climbing. She constantly surprises me with what she's capable of.

Catching Up

Wow, it's been a while since I last blogged! 8 months! It's been a busy time with lots of crazy family-goings-on, Warrington Wolves winning *another* Challenge Cup and a break-in, not to mention our little Bee turning 4 years old! It's strange how all of a sudden she seems so grown up, like it's happened all at once. Now we have a proper little girl with a personality and sense of humor, who likes to tell us "now" when she wants something and has started choosing her clothes for the day; a right little madam!

We've seen many changes in Bee in the last 8 months, across the board. Her development is progressing well and we think a huge part of that is increasing from two afternoons at nursery per week to five mornings. 

Her learning and cognition has improved vastly and we think her understanding educationally has really come along. Although she's not quite at an age-appropriate level (her speech therapist approximates 3 & 1/2) we know she understands a lot of colours and the numbers 1-10, a big achievement.

Speech-wise Bee now has a vocabulary of over 90 words and is gaining more by the week. Many of her words are just syllable sounds and can sound the same but she understands and attempts them. She recently said 'guitar', which her daddy was especially thrilled about!
We saw the cleft palate team at Alder Hey again in December but unfortunately she still hasn't got enough clear speech to make a decision on her submucosal cleft repair. It's not something we'd even consider unless the surgeon could guarantee us that it would benefit Bee.

 Since Bee became mobile and left her walker behind there's been no stopping her. Although she still tires fairly easily, she chooses to walk in most situations. She can even navigate curbs with a little support! She's a little unsteady on gravel or uneven surfaces but her strength improves every day.

We had concerns recently about Bee's feet turning out when she walks and the way she dragged her left foot when she became tired. We know hypotonia is still an issue for Bee so I booked another appointment with the physio to see if it's anything we should be concerned about. Now, five weeks later Bee has a lovely pink pair of Piedro orthopaedic boots which we're slowly noticing is having a beneficial effect, she's much sturdier and we've not noticed any dragging of her feet.

Bee still likes her routines and can be upset if things are different than what she's used to but she seems to be needing rigid structure much less than she did at a younger age. I've always felt that Bee used structure and familiar things to feel secure when she's lacking in confidence. As she grows so does her confidence and she seems to not need the refuge of routine as much.
Similar can be said of her fear of texture. No more does she panic when on grass and we've even witnessed her playing in a sandbox! Major progress! We feel nursery have been a massive part of this change in Bee, her confidence has soared since being there.
The biggest example of this was before Christmas at a local garden center. We'd gone for a meal & a browse and I noticed they had a table set up for facepainting. Now, we've tried this before. It was an absolute no-no. Not only does it involve someone touching Bee's face, it's them touching her with something cold and wet. She freaked. So consequently I didn't have high hopes for this time. But I asked her anyway and surprisingly she insisted she wanted something done. The girl doing it was very nice, she tried asking Bee what she would like but of course Bee just kept trying to show her her doll. I thought it was best to start small so I gave Bee a choice between a flower or a bumblebee on her cheek. She chose a "bebe" - bumblebee.

Aaaannnnnd..... voila! 


She did it! Bee actually sat still and allowed a complete stranger to not only touch her face, but touch her with something cold and wet! I was so proud! Of course I had to keep stopping her from poking at it or trying to take the brush off the girl, as you can see in the picture her hand is sneaking towards one of the paints! But overall it was hugely successful and she spent a fair amount of time afterwards admiring her new "bebe" in the mirror!


Just recently Bee had another video fluroscopy. We had one towards the end of 2012 but unfortunately Bee would not cooperate and drink the white liquid so we came away frustrated. She's understood for a long time what 'drinking' is now and we've been offering her water, which she readily accepts. We're desperate for a positive video fluro result as it will be the beginning of trying to wean her off the mic-key button. And so recently we finally received our appointment through for another. Of course we get to the appointment and Bee refuses to sit in the chair, not a good start. She initially refused the drink this time too but I managed to persuade her to take a small sip. When she realised it wasn't water she immediately spat a majority of it back out but the speech therapist was able to see that some did go down her throat and.... she didn't aspirate it!! Wonderful news! Of course this was tempered somewhat by the fact that some aspirators can only aspirate 1 in every few swallows so the team were not able to give us full permission to start her on liquids but they are happy for us to continue with water. When we and Bee feel ready to move forward onto other liquids, juice for example, we'll have to go back for another video fluro and get a comprehensive positive result. But I'll worry about that in the future, for now my girl is drinking water and it's amazing.

Bee turned four years old in September 2012. Four. I still find it hard to believe that I have a four year old. She was spoilt for her birthday and got two lovely days out. The first we spent at Eureka, the national children's museum in Halifax. It's a wonderful place with absolutely tons to do and Bee had a blast even though much of it was beyond her. She's not ready for leaning about how science works and what our blood vessels do just yet but the 'mini town' section was well worth the entrance money! There's a bank, shop, post office, garage and a house. One of Bee's favourite games is pretend play so she had a ball playing 'shops' and posting letters. We would definitely go back there!

Eureka!

Our second day out took place on Bee's actual birthday, we went to Blackpool Sealife Center and then down the front to see Blackpool Lights. the Sealife didn't turn out to be the best choice, Bee was not impressed by the fish and spent most of the time wanting to leave. We got an equally indifferent reaction to the lights, I think by the time we started (when night fell) she was too tired to really be bothered. She did enjoy the flashing light stick we bought her off the front though! I think her favourite part of the day was the meal we went for between the Sealife and the lights. She got to eat chips (her favourite!) with ice cream and a share of daddy's chocolate brownie for dessert! Winner! 

 Over the last few months one of Bee's favourite things to do is bake with her daddy on his days off. She's getting very good at mixing and I've been treated to some very yummy fairy cakes, biscuits and cookies recently!





Our biggest change is that Bee will be starting school in September. School. I can't believe it. It's been a long and confusing process and we still haven't chosen our final school. There are 6 to choose from: 2 special needs schools and 4 mainstream schools with developmental units, which is the fancy way of saying special needs class. We started this process knowing that Bee wouldn't be in a mainstream class but we've kept our minds open as to the other possibilities. We've now had a handful of meetings with the Educational Psychologist and copies of reports from a few of Bee's therapists, we have a good idea of what will be going in her statement: that Bee has complex learning needs and significant developmental delay. She will need a lot of support in an educational environment and ongoing intervention from her therapists. But we know that Bee is a happy and very sociable child, she thrives on attention from others and benefits greatly from interaction with her peers. Her nursery have said she loves being in the 'garden (mainstream) room' and plays brilliantly with the children in there who are a little ahead of Bee developmentally and can model behaviour for her and help support her play.

Of the 6 schools we ruled out two immediately, one for being a faith school and we're not a family of faith, the other as we believe it provides for children with more significant physical and learning needs than Bee. That left us with 4 to choose from; one special needs school and three primaries with development units (or 'designated provision'). We've been encouraged by everyone to view, view, view the schools and find the one we're happiest with so that's what we've done.

We started with the special needs school, which has an outstanding Ofstead report and is located close to Bee's Nana & Grandad's house. The school is great and one of the biggest positives for us is that it caters for children aged 5-19, which means if Bee was to attend there she wouldn't have to move again until she was ready to end her education. This is a big plus for us as Bee really struggles with settling at new places and we're already very stressed about what September will bring. They use Makaton and the PECS system and the teacher/pupil ratio is great. I really couldn't pinpoint any fault with them at all.
But it just didn't feel right.

Over the following few weeks we visited the 3 primary schools with designated provision. one of our main concerns about this choice for Bee is that she would struggle to cope. We loved all three of the primary schools we visited but all the children seemed so much more advanced than Bee. Still, that was something that could be counted as a plus as well as a minus. Bee really benefits from watching and interacting with others, especially children who are ahead of her developmentally.

We came away from the viewings no closer to a decision and decided to go back and look at them all again, but take Bee with us this time. In part this was because we hoped seeing Bee in the environments would help us get that feeling about 'the right one' that everyone said we would get. In was also in part because we wanted staff at these schools (especially the mainstream primaries) to meet Bee and reassure us that they could support her needs and help her thrive. 

The special needs school was first and Bee spent some time with the reception class while we toured the playground/outside space with the headteacher. She had a blast and didn't want to leave but we were not keen on the classroom facilities and felt that the structure of the session we saw was a little too like a nursery. Of course we only saw a snapshot of the day but we came away unhappy.

Next was the primaries. Foz's favourite was first. It's hard to judge this school on it's facilities as it's in the process of being knocked down and rebuilt before September, so will have brand-new everything. Although I suppose that counts as a plus but it doesn't help us imagine Bee attending! We both really liked the teacher at this school, she talked very passionately about her pupils and her job. Plus instead of spending the entire time talking about the school (which others did) she asked us tons of questions about Bee and told us how she (and the school) could support her needs and make the setting suitable for her.
Bee spent about an hour with the class in this school. The minute we walked into the classroom she was gone. She did us a beautiful painting while we spoke to the teacher (which is currently adorning our fridge) and had a ball with all the toys.

The second primary we visited again had been my favourite on our first viewing, I liked the facilities and the staff and with all the schools being so similar in lots of ways it had come to down to minute things like whether or not we liked the teacher. On this visit Bee spent about an hour with the class, while we stood in the background and watched. She sat at the table with them and had some cake and water (they were having some kind of celebration - we timed that well!) and, although she didn't say anything and just watched she didn't look lost or left out. Many of the children went out of their way to try and include her, asking her questions and offering her cake or more water and she didn't seem she or withdrawn. She looked tiny in comparison but not out of place. After cake she followed the other children outside for a 10 minute playtime. She even, I saw it with my own eyes, played throw-and-catch with another little girl! It was a struggle not to cry!

After that second visit Foz and I decided that our final selection was between one of those two. We've decided on a primary with designated provision (rather than a special needs school) as we feel that Bee will really benefit from being among others who she can model behaviour and learning on. She thrives on interaction with others, especially children who can help support her play by leading. Basically, we want to give her the chance to cope in slightly tougher environment. Plus we have the reassurance of knowing she'll have 6-monthly progress reviews and if she's not coping as well as we hope she'll be able to move to the special needs school.

Now all we need to do is decide between our final two!

Nursery Meltdown

Bee loves nursery. Loves it. Every single session when I drop her off she toddles straight in. No clinging to me or crying. I even have to remind her to say good bye sometimes.

Bee's nursery is split into four rooms: the sensory room, the carpeted 'play' room, the 'messy' room where all the arts & crafts are done and the outdoor/indoor room, which is essentially part of the garden with a roof and roller doors that can be lifted up. Our usual entrance is into the carperted 'play' room. We have the same routine each time: coat off and on Bee's peg, find her picture on the board and place it on the 'I'm Here Today' board, kiss for mama and off she goes!

When I dopped her off for today's session her teacher was waiting at the door to the 'messy' room. "We're using this entrance today as we're going to the park" - oooo wonderful! Bee loves the park! We walked through into the room and I crouched down to give her a kiss bye bye. The minute I bent down I could tell by her face something was wrong. Her little mouth was starting to turn down at the corners and she had that look in her eye. She put her arms around my neck and clung like she hasn't since she first started nursery, and I could feel her starting to cry.

It was the routine. The routine had changed. We come through the wrong door, into the wrong room. There was no peg for her coat in this room or board with her picture on it. Her teacher came over and I explained the problem, we decided the best way to deal with it was to take Bee out and back in through the route she was accustomed to. She readily released my neck and held my hand as I asked if she'd like to go and find her picture on the board. The tears stopped almost immediately and she willingly accompained me out of the room and down the corridor to the door of the usual room. We had no coat to hang on the peg (the weather is scorching at the moment) but we had her nursery bag to place in the box and her picture to find on the board. With those tasks two accomplished Bee happily walked into the usual room and didn't look back.

We're starting to notice these little autistic-type moments more and more and they can have an impact on our day-to-day life. We're still struggling between accomodating them and encouraging her to be more flexible. Today I felt it was better to accomodate and ensure she had a good session at nursery, than force the different entrance on her when it was only a one-off.