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.

 

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!

The Start of the Statement

This week we had our initial appointment with the educational psychologist to start the statementing process for Bee. It was something we'd been looking forward to and dreading in equal measures.

Our appointment was scheduled for the afternoon, after the educational psych. had spent some time with Bee in the morning. Thankfully Foz was off work so we were able to attend together. It can feel a little overwhelming sometimes attending these kind of things on my own while Foz is at work so I'm always grateful when we can do it together.

For those unfamiliar a statement of special educational needs to a document setting out what your child's needs are and what assistance the council/school is legally bound to provide to ensure that your child reaches their full learning potential. We are very lucky that Bee will be statemented automatically, many parents have to fight to get that for their child.

The ed. psych was lovely, very friendly and eager to reassure us that she's on our side and wants to help us get everything that Bee needs. She began by asking us all kinds of questions like how we felt Bee was doing, what areas we felt she needed assistance in, where she was excelling, what things she liked to do, what she didn't like to do etc. Our answer was, of course, that she is flying. Since starting nursery she seems to have improved in every area. She's more confident, communicates more, mobility is better, the list goes on. I found myself having to forcibly stop myself from going on and on about how fantastic she's doing and how proud we are.

Then it came time for the ed. psych's turn. She asked if we minded her giving us some observations she'd made about Bee during her time with her that morning. She was quick to reassure us that her observations were made during a 'snapshot' of Bee's time, there'd be things that Bee would or wouldn't do during the session that she may or may not do at home so we were to take everything with a pinch of salt. 

She began by telling us what a sweet, pleasant, bright and curious little girl Bee is and that we should be very proud of her (which we are!) Looking back it feels a little like that was the sweetener before the bad news.

Next came the observations:

• Bee interacted brilliantly with adults, was able to engage them and knew how to make her feelings/desires clear through language, sign or gesture. But Bee did not engage other children in play. She would play next to other children, but not directly with them. Occasionally she would become interested in something another child was doing and would approach to have a look, but would not make an attempt to join in.
• Bee would sit during group time and listen/respond if an adult was talking to her directly. Once the adult had moved on to talk to another child, or to the group as a whole Bee's attention wandered and she didn't appear to process the information that was being given.
• Once given a task to perform, in this instance filling a bucket with water from the water pump and using that to fill the water play table, Bee could begin to carry it out but struggled to complete. She seemed to forget what she was supposed to be doing and needed a lot of repeated prompts to carry out the whole activity.
• Although very confident walking on smooth flat surfaces Bee was observed to need assistance with mobility during use of the water pump, which stands at the top of a slight incline. She managed well by herself towards the pump but on the walk down the incline she asked to hold the hand of a staff member for support.

From there the ed. psych was able to make some initial recommendations for the statement:

• Bee has severe needs with communication. She has a handful of Makaton signs and some language but the words are unformed and difficult to understand.
• Bee has severe needs with mobility. Although she is able to walk unaided on flat, smooth surfaces Bee struggles with any uneven surface or inclines. She doesn't watch where she steps and will step off edges without realising. She needs an adult with her for supervision at all times.
• Bee has severe needs with learning. When engaging with one adult in a direct conversation Bee will listen and process information she is given. When that conversation encompasses more children Bee struggles to engage in the same way and can't seem to process information she receives. This will have a massive impact on her in classroom learning.

This report for us was pretty devastating. We'd been so proud of Bee and so pleased with the progress that she'd made we'd gone into that meeting a little naively, thinking that the educational psychologist would be equally impressed and tell us that Bee is perfect and would do fantastic in a mainstream school. To hear the words "severe needs" repeatedly was a bit of a shock to the system. Bee is our first child and I think we forget sometimes that although she is doing really well for what we'd always been told to expect, she's not doing so well in comparison to other children her age.

In September Bee is due to go up to 15 hours a week at nursery from 6 hours. We'd been considering our options for that: whether to keep her entirely at the special needs nursery, split the time between a special needs and a mainstream or move her over to a mainstream nursery entirely. We'd been leaning towards splitting the 15 hours between her current special needs nursery and a mainstream, the idea being that she'd get the 1-on-1 she needs at the SN nursery and the 'school' experience at the mainstream. We had been hoping that Bee would have achieved enough to attend mainstream school in September 2013, even if she needed extra assistance to do so.
Since this meeting though we'd reassessed our thoughts on the matter. It would seem that a SN nursery is best for Bee at the moment and we will probably make the decision to keep her there for the full 15 hours in September. We want Bee to achieve her full potential and if that means a special needs nursery and eventually a special needs school then that's fine with us. The last thing we want is for her to struggle and be branded a 'failure' in any mainstream setting.

For more information on Statements: http://bit.ly/aeh4YB