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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.
You can find more information here:

The Farm

Following on from the 'make the most of our last days' trip to Eureka! last week, this week we visit the local pick-your-own farm for some veggies. I knew from the website that they still had some peas left and as the weather was so beautiful I decided to take Bee down to pick some. I was a little uncertain as to how successful it would be as Bee really doesn't like many textures and outdoorsy things.

I'd spent the morning explaining to Bee that we would be picking vegetables to eat while we were at farm, in preparation for the difficulty she may have with it. When we got there she was raring to go, we collection our plastic tray from a staff member and made our way out to the vegetable fields.  

Although there were lots of vegetables to choose from I knew I'd have the best chance of getting co-operation out of Bee if it was something she really liked, so it was straight to the peas. All they had left were sugar snap peas and mange tout, which was good enough for us. 

Bee was happy enough to walk down the narrow, uneven aisles between the pea plants although she was a little concerned by the greenery brushing against her bare legs and insisted on holding my hand. Something silly Mama didn't think about. Sadly, as we're quite late in the season, many of the 'easy pick' peapods were gone and we had to dig around towards the base of each plant to find anything. This was totally beyond Bee from a sensory standpoint and so I did my best to find pods then manoeuver the stem towards her for plucking. This worked quite a few times and we were even lucky enough to find a few missed ones towards the top that Bee could manage by herself.

After a little while the amount of stressful texture around her all got too much and all she wanted was to be carried. Which is lovely, except when you're stuck in the middle of a field, with 2 heavy bags, a carton of peas and a very heavy toddler in the unrelenting sun. I managed by carrying Bee for a short distance towards the end of the aisle, plonking her down in a space while I looked for more peas then carrying her a little further and so on. She was happy to stand and wait while I looked, so long as she didn't have to move through the plants. She quite enjoyed standing and munching on peapods!

 

When we had a tub full of sugar snap peas I carried Bee back to the pram at the end of the aisle, where she sat eating peas and drinking water, ready for some quiet time after the stress of the greenery. On the walk back to the farm shop to pay for our haul we passed the broadbean section, I grabbed some of those and a raw corn on the cob from the maize field, which Bee loved eating! 

By the time we'd purchased our veg (with a few extra fresh corn on the cobs from the farm shop) Bee was refreshed and ready for the park. Sadly it's not very good, consisting of just a tall, ladder-accessed bridge and slide. Not at all suitable for Bee. After lots of asking "why" she couldn't play on the park she contented herself with sadly watching from the sidelines and chewing on her doll. My heart ached for her.

Sad girl

I managed to persuade her away from the park with the suggestion of playing with her ball on the field. Eventually she agreed and we went hand in hand back to the car to find her ball.

We took a picnic blanket and her big Minnie Mouse ball and had lots of fun playing catch and chase on the field. The park became a distant memory, all disappointment forgotten. Soon it was time to collect Daddy from work, well timed as my girl was beginning to flag. She was quite happy to continue her veggie picnic in the car though!

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'.

School Visits

Since receiving confirmation that Bee will attend Bewsey Lodge Primary School in September she's been invited for three hour-long sessions to help her get to know her new classroom and teachers. I'd been a little worried about how Bee would cope without us in her new class but I needn't have been. 

Each time she's been excited on arrival and recognised her new teacher, Mrs J. She's left us at reception without a backwards glance and despite us waiting around for the full hour each time, not once has she needed us before her session had finished.

I'm thrilled that she likes her new teachers so much and seems very comfortable both with them and in the new classroom. My only concern is that currently an hour session is like a fun playtime for her. When September rolls around she'll be going from 9am-3pm. A huge leap.

 On the way home after the first of her 3 sessions (one a week) we visited the local park as the weather was beautiful.

Holiday Book

We've booked our first family holiday for September of this year and I'm so very excited about it! It's Bee's gift for her 5th birthday and we're off to Peppa Pig World in Hampshire! It's in the New Forest, right down near the south coast and we're staying at Hoburne Bashley Holiday Park. 

We're only planning one day at Peppa Pig World (unless Bee really loves it) and have 4 other days to fill with fun and adventure. We're thinking maybe a car ferry over to the Isle of Wight or a visit to Beaulieu Motor Museum in honour of Bee's obsession with buses and trains, exploring the New Forest, maybe an animal park or farm, the seaside... there's going to be lots to do.

Since booking I've been worrying about how Bee would cope with the holiday. How do you explain to a 4-year-old with learning difficulties that you're staying away from home for a few days in a big box on legs? Or that for a few days she'll have to cope with a complete change to her normal routines? Bee always copes best with change when she's had some preparation so I decided to tell her about the holiday early. Of course the unforeseen problem with this has been balancing preparing Bee with her complete lack of understanding about things happening in the future. She's very excited about Peppa Pig World and asks me most mornings if we're going. Thankfully when I say "not today" the worst I get is a few whys? before she moves on!

To help with the preparation I thought some pictures would help so I emailed Hoburne Bashley and asked for a brochure that we could sit and look through together. Unfortunately when it arrived there were not many 'useable' pictures, just lots of information. I cut out the few I could use and got searching on Google images for generic pictures I could use to complement the few I had.

There was a lot of information I wanted to include about our holiday so there were two pages about where we would be staying, a page for Peppa Pig World, a couple of pages for activities we might do and a page for out trip on the way home.

Bee has loved sitting and sharing the book and I've found it a really helpful tool for talking about our holiday together.

Celebrations

Well it's been an interesting month or so. I turned 30 at the end of May and spent a busy week with family. My uncle has a birthday a few days before mine and we had a lovely day with Bee, my mum, auntie and uncle at my grandparents house, enjoying a joint celebration with lots of presents and munching on two lots of cake! 

For my birthday I'd chosen to spend the day in one of my favourite places: Wales. I'd wanted to visit Llanberis for a long time and even though it's a long drive my birthday was the best opportunity.

Sadly the morning of my birthday was overcast and rainy but we packed the car up anyway, making sure we had lots of warm jumpers and coats. It's about a 2-hour drive to Llanberis so we set of early, grabbing a McDonalds breakfast on the way. Yummy!

LLanberis is beautiful. It's a small village at the foot of Mount Snowdon, within the incredible Snowdonia National Park. It's the site of the famous Welsh slate mines, both the abandoned and still working. Slate quarrying is very wasteful, only approximately 10% of the slate is used and the rest is discarded.
So much of the landscape is shaped by the huge rock faces of the quarries and mountainous piles of waste slate.

An interesting historical note (I'm fond of those) is that the two lakes running along side the quarries were once significantly bigger but were infilled by thousands of tons of slate and the newly-created land built on. 

  One of the reasons I'd chose Llanberis, aside from my love of that part of Wales, was because there's a lovely steam train that runs along one of the lakes and a ruined castle to explore: perfect for Bee.

She got very excited once she saw the train arriving and couldn't wait to board. We had lots of fun playing with the old-fashioned window before setting off!



The journey took us along the two-mile stretch of Llyn (lake) Padarn then back along the same route once the engine had turned. We watched the steam from the funnel fly past our window, listened to the chugging sounds, counted the boats and the lake and took lots and lots of pictures. Even Bee wanted to help!

After the train journey we took a walk into Llanberis village for some dinner, we were all getting hungry. We'd promised Bee something nice and she kept repeating "nye eat ow" - nice eat out. She can get a little impatient and doesn't always understand that when you say something is happening it doesn't mean it's happening immediately!

We ate at a local hotel and during the wait for our food Bee had a mad 10-minutes. She just charged round the space (thankfully there were no other diners) jumping and hiding, screeching and playing with the toys we'd brought. Of course, her hypotonia brings her back down eventually and her little body can't keep up with her enthusiasm. Of course once food arrived (sausage and chips in Bee's case) she was up and back at the table in a flash. With ice cream to follow it was a big winner!


The rest of our visit we spent exploring Dolbadarn Castle, beautifully located on a rise between the two lakes, giving fantastic views. thankfully by this point the low-hanging mist and grey skies had disappeared and all we had was sun!

Part of the path up to Dolbadarn Castle involved crossing a stream with a sheep gate. Bee was very proud that she navigated it all by herself! She continued this all the way to the summit of the rise, without once asking to be carried. Every steep, uneven and rock-strewn section of the path she managed with aplomb, needing only the smallest amount of hand-holding to get through it. I think it was the ice cream that fortified her!

There isn't much left of Dolbadarn Castle, just an empty circular tower with steps spiraling up around the outer wall and the crumbling remains of walls that once formed part of the whole castle. It left plenty of open space for Bee to play chase and catch with her Peppa Pig ball although she wasn't impressed by all the sheep!

By the time we'd explored around the castle it was getting late and Bee getting tired. I knew with a 2-hour+ drive ahead of us it was time to leave. We'd drove the A55 expressway for speed on the morning but on the way home I wanted to drive the longer route through the Snowdonia National Park. I couldn't be that close to that beautiful place without seeing some of it. And it was totally worth the extra 30 minutes or so on our drive home!

I really enjoyed my 30th birthday, it had been everything I wanted: spending time with my beautiful little family in the most beautiful place on earth.

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! 

An Afternoon of Sun & Shopping

We had a lovely day out yesterday at Bents Garden Center with a family friend, Bee's Uncle Stu.

We usually start with something to eat in the amazing (if expensive) restaurant and today was no exception. Moroccan pancakes for me and hot beef sandwich for Stu. The sun was beaming down and, although there still a cool edge to the wind, we decided to eat outside. This weekend we've seen the first real sunshine of the year and it's been wonderful to share great company and food under the clear blue skies. Bee had a plate made up of bits from both mine and Stu's and did a sterling job of tasting all the different foods. She stuck to the broccoli and peas in the end. That's my girl!

Of course Bee finished way before and was soon mithering to be set loose on the playground she could see from our table, pointing and  asking "me play here mama?" and "me pah, me pah". She meant 'park'. I made my impatient little miss wait until we'd both finished eating. I can't let Bee loose to play unattended. Firstly her danger-awareness, anything from surface level changes to strangers, is zero. Secondly she often needs assistance on play equipment as her gross motor skills are under-developed and she needs to be lifted on and off or helped in other ways. After 10 (torturous for her) minutes Stu and I were ready and we headed over to the park.

She spent much of the first 10 - 15 minutes running around the various pieces of equipment, deciding which to go on. she's get so very excited that she runs and screeches, flapping her arms and flitting from one piece of equipment to the next, not being able to commit to one thing or another long enough to actually go on it. Once she's calmed down she becomes more willing to actually use the park!

Bee's first choice is always whatever climbing structure leads to the slide, although she rarely will use the slide until we've been on the park for a while. Her confidence in her mobility needs boosting much of the time and she requires a familiar adult to be near her at all times. If she moves ahead she will stop and turn around until I reach her, or take my hand and pull me along with her. Sometimes, on days when I'm having a bad day, I'm feeling tired or stressed, I envy those parents sitting around the edges. Those parents watching their children run around while they drink their coffees and chat. Then I look at my girl's beaming face as she takes my hand and says "me up mama" and I remember that I'm the lucky one. They're the ones that should be envious.

To begin with I had to lift Bee up to the 'bridge' level on the main climbing structure for her to walk back and forth, waving and giddy to be up there. A couple of times she sat down at the top of the slide but no amount of encouragement could get her down and each time she backtracked and moved back to the bridge where she felt more secure. It didn't last long, she wanted to be off exploring the next piece of equipment so I lifted her down and she was away.


It wasn't long before she started asking for the doll I'd been carrying around. Something that always helps is having a doll on hand. Often Bee will participate more if she can use her doll to do the activity first then follow and do it herself, almost like she's using the doll to 'test the waters' and see that it's safe. She pottered around for a bit, deciding what to go on before she headed back to the slide. She started up the steps, putting one foot on and using the bars to pull herself up but her courage left her and she froze, refusing to continue up by lifting her back leg on or moving off the steps by bringing her front leg back down. I used the doll to climb the steps, trying to encourage her but nothing. Bee wouldn't move. Until a small girl, much smaller than Bee, came charging past and climbed straight up the steps. Bee watched her and as soon as the girl gained the top step Bee was straight up after her and followed her down the slide! It took one tiny tot 15 seconds to accomplish what I'd spent 5 minutes trying to do. This little moment is one of the reasons we are so keen on Bee going to a mainstream school with special needs provision. Bee thrives around others that can do things she can't.

Once she'd climbed the steps and gone down the slide once that was it, there was no stopping her. She looked back for me less and charged ahead by herself more. 

After almost an hour we decided to give Bee a break and have a look around the garden center. She was starting to stumble and had already fell over a small, raised wooden bridge after not noticing the level change.

Bents is a beautiful place, full of beautiful (if waaaay out of our price range) things and I always enjoy a mooch around with Stu. On this trip we spotted something that I couldn't leave without: a Peppa Pig ball! Bee fell in love and it didn't leave her grasp for the rest of our day out. Even on our second visit to the park she took the ball around with her instead of the doll. The ball went down the slide first, the ball was pushed through the tunnel...

Bee's Peppa Pig ball created a lot of interest from the other children on the park. Every time Bee dropped or threw it there would be another child racing to pick it up. As first I kind of hovered behind Bee as she went to retrieve it, ready to pounce if she got into communication difficulties but as time passed I started to hang back. Bee will be going to school in September and regardless of what type of school she'll have to learn to deal with other children of all abilities. As always she made me proud, handling the situations with aplomb and more confidence than I'd expected, even though she did come back to me for reassurance occasionally.

We had a lovely day out in the sunshine and Bee had a brilliant time. By the time we were ready to leave she was so tired, both physically and mentally. I think she'd run her little legs to water with her double session on the park and exhausted her mind with all the stimulation and interaction with new people/situations. We made the 15-minute drive back into the town center to pick up Foz and headed home, where Bee was straight to bed and, unsurprisingly, straight to sleep!

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.

 

Boo Rye

Bee very much enjoyed our recent bus ride and I wanted to share some of my pictures. As I drive we don't travel on buses very often but when my car was in for an MOT recently we got to ride the local bus home. The whole thing was a new (to her memory) experience for Bee. She loved being in the bus station, I thought her heart might explode with excitement when she saw all the buses lined up in the bays.

Luckily ours hadn't arrived and we were able to watch it pulling in, with much squealing and flappy arm-waving. Bee helped pay for my ticket (she goes free) and, once I'd parked the pram up, I let her choose the seats. I think she'd used up her store of new-experience confidence for the day and used chose the nearest seats possible to the pram. I helped her on to the seat next to the window and we spent a very enjoyable 10-minute journey home watching people and traffic, counting houses and naming colours of cars. Even though she insists everything is pink.

Since getting the car nearly 3 years ago it's become all too easy to rely on it and not worry about struggling on public transport. As Bee enjoyed her bus ride so much I'm determined we will take more short journeys on a bus. Watch this space!

Whoops

It may have been a mistake to walk past this section of the toy shop...

Cute Factor

I have nothing of interest to report today, I just had to share some cuteness from over the last few days.

In our town center shopping mall there a two very special rides that Bee loves to have a turn on each time we shop. She calls them her "Pi Pi rye". A couple of days ago we nipped into town to collect Foz from work and couldn't pass one of the rides without having a turn!

(Please excuse the pyjamas, she had a poorly tummy!)

Happy squealing and screeching is something Bee does a lot when she's excited, she also does lots of flapping with her arms! She's a very demonstrative child!

Bee's grandparents bought her a lovely gift this week, a Disney Brave doll. Bee is convinced the doll is her as they have the same hair so she calls her "me doll". I think her gift went down well...

Winner!

Our visit also coincided with my auntie's birthday and we'd bought her a cake. After the 'happy birthday' singing and while my auntie posed for a photograph I just captured my Bee deciding she didn't want to wait for her share any longer...

 

She'd taken herself into the kitchen, got a bowl and spoon out of the drawers and coming running in saying "me eat up!" Cheeky princess!!