Saturday, 16 March 2013

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!

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!


Amy Dunn said...

Have been wondering how she's getting on, thanks for the update. And a belated happy 4th birthday! Really pleased she's doing so well and good luck choosing a school xx

Kezzaboo said...

I've missed these blog updates!! Lovely read Cath :o) xx