Hello Goodbye

Happy Autumn! The "season of mists and mellow fruitfulness" is definitely my favourite time of year. I adore the beautiful leaves, the first coal fire, the roasted chestnuts, the shining conkers outside our door, the apples, the pumpkin picking, the fading sunlight, the chunky knits, the cosiness of it all. I love it. I think Autumn is also feels special to me because after years in the education system, my brain processes the year as September to September. So the start of this month almost feels like New Year when it rolls around. It feels like a time for fresh starts. Sometimes, it also feels like a time for goodbyes.
This month we have experienced one huge fresh start and one sad goodbye.
Yesterday we attended the funeral of Paul's Aunty Brenda. Depending on how long you have been reading this blog you may remember pictures and mentions of her. She was one of Paul's Mums sisters. The three Golden Girls. She was a second Mum to Paul as he grew up and left a lasting impression on him and in later years me, too. As Paul's mum had sadly passed away when I was pregnant, Brenda and younger sister Sylvia came to mean a lot to us as the matriarchs of the Woods/Drake family line. Brenda was unendingly kind, gentle, selfless and possessed that great vintage "scouse humour". Everyone who met her adored her. She in turn cared for everybody and in particular had a huge soft spot for children of any age and description. She loved Elin as she did all her great nieces and nephews and I believe Elin most certainly inherited her strength of character and resilient nature. At her funeral I was in awe of, though unsurprised by, the outpouring of love for her and the continuous tales of her good humour and huge heart. It was inspiring. As we were told in her Eulogy, perhaps when leaving that sad day behind us, the greatest debt we could pay to her memory was to try, where possible, to just be a little more 'Brenda'. It would certainly make the world a better, brighter, place.

May 2019 

Brenda (right) and Paul's other amazing Aunty, Sylvia (left)

As Brenda made the world a brighter place, so Elin continues to shine her light on those who surround her! I am SO PROUD of my sunshine girl this past fortnight. She has experienced a giant change, an enormous new start- that of beginning her new school. She has definitely been very 'Brenda' through this transition- serene, happy and taking absolutely everything in her stride without fuss. I'd like to say I'd been the same but instead I've been typically emotional about the whole thing. I just can't believe my baby is in Year 7!! Seeing Elin settle so happily at her new school thus far has provided the necessary antidote to my acute sentimentality though. Elin's New Year consists of meeting and creating a whole new school family and support network to enjoy over the next few years. She is so lucky. My New Year consists of quelling waves of grief and strange feelings of loss with the wonderful positives of the past fortnight and the knowledge that Elin is entering an amazing new chapter of her life which she is going to love.

As a final thought as we enter this open book of the 'next stage' in Elin's incredible life, it struck me last week just how many messages of support we had and wishes of good luck from friends before she started school. I have always known this love for Elin exists but big milestones in her life make it so much more apparent. She is one lucky girl. We are one lucky family. It brings it home to me that Elin is not the only one with an incredible support network surrounding her and I am eternally grateful for that. So going forward, my New Year's resolutions are that I am going to channel my inner bravery more often, take my lead from my girl, always focus on the positives and as much as I possibly can, just generally "be more Brenda".

Happy "New Year" folks

xxxxxx

The End of an Era

In a few short days,  Elin is leaving the class she has resided in for over eight years and in September, is moving to secondary school.

Someone once told me they thought we were really ‘lucky’ that Elin had a school she could go to. That there were schools ‘around’ that catered for children with her needs.

No.

Elin and her friends have a right to expect an education (a good education) just as much as any other child. Its not luck, it’s a legal requirement.

What IS lucky is that school happened to be Ysgol Y Canol. That, to me, was lucky. There was no choice for us back in 2011 when we were looking at schools. There was only one in the area which would come close to meeting her needs. I found this really difficult, because it was obviously not the school I had planned on her going to. She was supposed to be going to the school in our village, which we had naturally just always assumed our child would attend, which I had attended, which my Mum still worked at. It was all going to be so perfect, Mum would be there after school for her, or if she needed someone, and we could even take her down there on her bike when she was old enough.  Realising Elin was not going to attend this school after all was like a yet another punch to the gut, so before Elin even started school there were huge emotional connotations for me surrounding the subject.

Despite our teaching backgrounds, neither of us had any real experience with ALN schools/units. When we went to look around Ysgol Y Canol we didn’t know what to expect, I was really nervous.  I was acutely aware if we weren’t sure about it that we had very few other options, which added extra pressure to the situation.

However, regular blog readers will know how this story turned out.  From the moment we got through the door it was pretty clear this was not a school, it was a home.

Just as a home is not a home because of what it looks like, but instead who is inside it, so a school cannot in the end be measured by its facilities, but by the staff.  The staff at Elin’s school are her family and we are devastated to say goodbye. “As many hands build a house, so many hearts make a school”.  This is so true for Y Canol. The love there was palpable.

From that day when we arrived full of trepidation about handing over Elin to strangers for the first time ever, to her last emotional couple of weeks, Ysgol Y Canol has provided us with nothing but excellence, believing that nothing but excellence was what Elin and her friends were owed and deserved. When you have a child with complex needs, a good school can be life changing.  To the Y Canol staff-  you changed Elin’s life. You gave her something we couldn’t, you gave her independence, you gave her a meaningful experience each and every day outside of the family home. You taught her so much, showed us what she could achieve and, early on, how her life could be. Right from our first visit, we could see there was no room for sorrow in this school. Only celebration. Nobody commiserated us, nobody patronised Elin. We were made to feel like we belonged there. For the first tile in Elin’s life our family experience was a normal one. You gave us as parents the most incredible understanding, support and care over the years too. She was two when she came to you, we were still traumatised from our lives being turned upside down following her birth. You helped to heal our family, you helped to mend two broken hearts. School quickly became something I could cross off my list of things to feel sad about.  It was a big one to be able to cross off.  I can never fully express my gratitude for this. School has been the constant anchor in the years of stormy seas we have weathered together as a family. You grounded us.

Now Elin is leaving for secondary school and we can hardly believe it. She is so ready for new challenges and has a fab secondary school to go to. We are excited about the new chapter in her life. But Elin leaves a tiny piece of herself behind at Y Canol- a piece of her heart, and we leave a piece of ours too.

We will miss you beyond measure and we will never, ever forget what you did for Elin and for us.

Thank you all, for everything.

Ruth xx

A dedication.

Q. When is a 1:1 support worker not just a 1:1 support worker?
A. When she is a Lyn.
Next week Elin's support worker at school, Lyn, is retiring. She has been by Elin's side every single school day from 2012, following an awesome grounding by previous support workers Laura and Louisa and has been way more to Elin than 'just' a 1:1 support.  She has been her second Mummy. I can't imagine Elin going back to school in September without her, or rather I can, but I don't really want to because it just makes me cry. We know the rest of the staff at school are fantastic, there is not one person there who I wouldn't gladly hand Elin over to each morning, so Elin is still going to receive the very best care possible and will continue to thrive and have the most fun ever :-) But wow, are we going to miss Lyn.
If you are reading this and you have children in mainstream school you will think I'm nuts. It's just so impossible to fully articulate what having a good support worker for your child with special needs can mean. Along with the head, senior leaders and class teacher, a dedicated 1:1 support who really knows what they are doing can literally create an entirely different life for your child. This is what has happened for Elin in the years since she started school. Maybe my constant praise of the school might seem over the top if you haven't been in my position. It's just a school after all! Except it isn't. It's Elin's second home, it's the only place she goes to without us. She cannot tell us what kind of a day she's had or what she has done. The trust you have to put into the staff and school as a whole is immeasurable. I can't tell you how hard it would have been when she first started, had we not quickly realised just how good the school actually was. A school, though, is just bricks and mortar after all, it's the staff that make a school a home. It was the staff that impressed us most back then, in Elin's first few weeks of school- unwavering support, dedication, commitment and an unparalleled amount of knowledge about children with PMLD. Elin was, and has always been, in safer hands than we could ever have hoped for. So when you have a child with profound and complex needs like Elin it very quickly becomes really hard to see staff as 'just' a head teacher or 'just' class teachers or 'just' support workers, especially with Elin staying in the one class for her whole school career. Actually, they become like a family.
We have always had a combination of amazing staff at Elin's school and I've blogged about it more than once before. This particular post though, is dedicated to Lyn, who has been Elin's constant for six full years now- almost her whole time at school. She has been her rock, her support, her encouragement, her challenger, her carer, her nurse, her physiotherapist, her entertainer, her educator, her second Mum and most of all, her best friend.
It's impossible to give a proper thank you to someone who has cared for your child in your absence like you would. As I've said, obviously the trust involved in handing over your non-verbal, profoundly disabled, tube fed, medically precarious child to someone else for six hours a day is enormous and terrifying. Also, if you get the wrong relationship everything for both the family and the school can be very difficult. We are indebted to Elin's head teacher back in 2012 for pairing Lyn with our girl. It was a match made in heaven. From the word go Elin loved Lyn with all her heart and I think the feeling was mutual. Most importantly, Lyn, in addition to the love and the cuddles and the fun, has also has consistently refused to sit back and accept mediocrity where Elin's learning was concerned. She has pushed her way more than I would have thought possible, knowing what Elin was capable of. This has led Elin to achieve, over the years, the many targets set for her by her teacher and has made all of us prouder than we ever could have imagined. Lyn just has never, ever given up on her and believe me Elin can be really hard work-especially in the older, horrendously dystonic days. The girl we have now is completely and utterly different to the girl who first went to school aged two. She has improved in herself and is now doing things beyond what we ever could have wished for. A large chunk of this is down to Lyn. I can never thank her enough. But I'll try.
Thank you Lyn.
Thank you for being you. Thank you for your sense of humour, so matched with Elin's (and ours!) Thank you for being there, for constantly going the extra mile, for being so instinctively good at your job and thank you for saying (and meaning!) that you don't want or need thanks for doing your best for Elin. I hope you realise how you have improved her life. Thank you for being Elin's voice, her eyes and her hands and her safety net for the last six years. Thank you for the dignity you have always granted her and for being her ultimate champion and protector. I hope you know what you have given her and what you have done for her.
I hope you know what you have done for me.
As a massive bonus, you also became Elin's bus escort this past couple of years and this was a true blessing. She literally went from our arms to yours and back again. What a lucky girl she has been. What a lucky Mummy I have been.
I hope you enjoy the retirement you so deserve and I know this isn't the end of the story for you and our girl!
Thank you Lyn- my words will never be enough.

Elin and Lyn- Best friends forever :-)

Elin’s Diary

Welcome to ‘Elin’s Diary’ which I’m hoping to update every Sunday reflecting on the past week of adventures! (Perhaps with the odd post in between, too). It’s been overall a good week for our little sunshine girl. She has been slightly off colour - something I’m putting down to the flu vaccine last weekend but is more likely just a little cold or virus with all the excessive secretions that have been plaguing her.  She even had a rather long nap at lunchtime in school more than once this week! Oh dear Elin how sad! She’s not done that since she was a tiddler.  Apparently she was snoring all over the classroom I’ve no idea where she gets those bad sinuses from! (Me) Although we don’t think she demonstrated appropriate remorse! I think detention is the only way forward.

On Friday I missed an apppintment in the athsma clinic for the THIRD time. I can only conclude that my sub conscious being really, really doesn’t want to go or that any *rare appointment that I have for myself with a healthcare professional just never quite arrives on my radar, even though it’s repeatedly written on my calendar! I’ve never once forgotten an appointment of Elin’s so why I can’t muster up the enthusiasm about my own health to remember a five minute check up is beyond me- maybe I’m scared somewhere in my psyche that I’ll be told red wine causes wheezing!! But I do think that the seemingly endless amount of appointments for Elin in the last six months or so has created a bit of a brain malfunction on my part. Perhaps you can carry around too much information in your head and you sort of short-circuit. I feel a bit like I’ve short-circuited! Yesterday for the first time ever we ran out of one of Elin’s medications. I had forgotten to pick up the new bottle from the Chemist. I rooted through the cupboards in disbelief of my own idiocy even though I knew they weren’t there. As I turned the bottle upside down and shook out every last drop, like in that Tomato Ketchup advert from the 80’s, I felt totally gutted. Elin is so vulnerable and reliant on us being on top of everything. Feeling that you let her down even in a tiny way is horrible. Yes we all make mistakes but being wrong is not one of my strongest points! Luckily for us we managed to elicit every last drop out of the bottom of this medicine bottle- taking us up to first thing on Monday morning where the new bottle will hopefully be waiting patiently for me in the Chemist. This barrage of appointments for Elin we seem to have been experiencing is not necessarily a bad thing though, I’m not complaining, she has an amazing team of professionals around her ensuring that she gets the very best care from all angles and for that we are forever grateful (I just wish my brain cells would stop feeling so frazzled and start working at full power again-if they ever have been)

For example, on Friday Elin got to start ‘Hippotherapy’ again. Sadly this is nothing to do with actual Hippo’s (shame!) and instead is a horse riding therapy for the disabled. Elin’s muscles, joints, spine, head control and pelvis are all given a good workout whilst on the back of a mechanical horse with a physiotherapist. One day she may migrate to real horses, but obviously there is a risk there now she is so big and a lot of responsibility for the back-riding physio to keep her safe. So a mechanical horse it is for now, which mimics the movements of a real horse. Elin loved it! It’s so wonderful just to get her doing something new that she enjoys and if there are physical benefits then all the better. 

 

The Clwyd Special Riding Centre is an amazing place which would never run without donations and volunteers. It blows my mind that this sort of opportunity is open to Elin because people are willing to give up their free time to make it happen. The generosity of the human spirit never cease to amaze me. We are very much hoping this is something Elin can continue to enjoy for some time to come.

Elin’s also had a really lovely weekend because it was her Great Aunty Brenda’s 90th Birthday Party! Wow! That’s quite an age and Elin was absolutely delighted to be out at night! In fact she was so good and so pleased we began to wonder if she thought the party was for her! It was a special treat that big sister and all round favourite person Caitlin travelled back from London for the weekend to sing at the party. She brought the house down as usual but what was lovely for me was to see how excited Elin got when Caitlin started singing. She just adored it. Usually I would shy away from taking Elin out at night because I don’t like to upset her routine (or things just aren’t suitable for her) but I’m so glad we did!!! I realised that I get used to going out in the evening without Elin and you always feel like you are missing a limb. It's a feeling you make yourself get used to for practical reasons but it never really goes away. So it was so good to see the extended family together and have Elin there alongside us. I’ll leave you with some pictures of Elin trying to steal Aunty Brenda’s thunder and wish you a really good week. Thanks for taking an interest in our miracle girl 😊
Ruth x

 

   

 

Xxxx

Why I love Elin's school

Recently Elin came home from school with a photo which reminded me of just how much I love her school. Having a local school like hers is just a crazy stroke of good fortune. It's the sort of school that, if you have a child with PMLD, you'd be getting on 'Right Move' and looking to up sticks just so that your child could attend. So we are enormously grateful that it just happens to be in our town and that Elin was enrolled at two and a half years old.
Regular readers of the blog will know that I have waxed lyrical about the school many times in the past. It's hard to describe what they have provided over the years for Elin with their ethos of inclusion and high standards of education. Each child, regardless of ability, is fought for, nurtured, encouraged, developed, taught and most importantly, loved.  This ethos was initially created by one of the most dedicated champions of the rights and needs of children with PMLD in education as you are ever likely to meet. Wendy Jones, the Head of Elin's school until her retirement last year, quite literally created (down to designing the new building of the school herself a few years ago to suit the children in the best way possible) a place where children like Elin could flourish and never ever be seen as less able, less important, less in any way. She spent her whole career cultivating a place of equal rights, of celebrating children with severe disabilities, of pushing boundaries and making children the best they could be. In fact, the school's motto is 'Working together to be the best we can be'. The Head accepted nothing less than excellence when it came to the teaching of her children at the school and we parents observed nothing less than excellence as a result. The staff too are amazing and if you ever want to see the epitome of 'Teamwork' just pay them a visit. It is not a school, it is a family. In addition to the outstanding teachers (that's official, ask the Estyn inspectors) there is an army of teaching assistants, each one assigned as a key worker for every child, each one like a personal guardian angel. The work they do day in, day out on a 1:1 basis with the children is sometimes incredibly difficult for them but always beyond compare. We joke about Elin's key worker being her second Mum. But when you consider the hours Elin spends at school every week, she actually is. There's nobody we'd rather hand the reigns over to outside of family for six hours a day in terms of caring for our girl.  It's little wonder to me that years ago the school became widely regarded in the circles of special needs education as a centre of excellence and somewhere that people came to observe good practice from all over Wales (and probably further).  The Head of the mainstream part of the school, Mrs Thomas, has also for years and years worked equally hard to create an excellent and revered environment for learning. She values and has carefully fostered the partnership with the special needs unit above anyone's expectations. This part of the school, too, has been named as outstanding and rightly so. Along with the incredible senior management team Mrs Thomas is just as dedicated as ever to maintaining this reputation and continuing to work in the very best interests of the children, since the sad retirement of Wendy last year. I would like to say this is the 'norm' for special needs school's but I know for a fact it isn't, though of course it should be. We know how lucky we are.
One of the most important things the school holds dear is inclusion. I have blogged about this before. The Christmas concert and Sports Day being examples of when I have seen it in action (find my post about the Christmas concert and the why I love the relationship between the children here). But the truth is there is a dedication to inclusion that runs through each working week at Elin 's school. I have been frequently told that the children from mainstream have been desperate to come and play with Elin. I know that sometimes in the past coming to play with Elin has been a chosen 'Golden Time' reward. These children are CHOOSING to play with Elin in their own time. The staff encourage the friendships as equal, in no way are the children like Elin seen as people they should feel sorry for. They get as much out of playing with Elin as she does. It's not even a big deal to them.
But it's a massive deal to us.
The nature of Elin's school is that the children in her class are not really able to interact in the usual way with one another. Although they clearly enjoy being around each other and regularly take part in activities together, most are non-verbal. This means that Elin only hears adult voices. She only really 'plays' with adults. That is until the children from mainstream come in. Children bring with them an energy, an innocence, an exuberance that Elin absolutely thrives off. If it wasn't for these kids she would be missing out on that. But in the true style of her school they won't have her missing out on anything. So along they come, reading to her, talking to her, playing with her. She is just one of them.
It's difficult to describe how this makes you feel as a parent. We all know the benefits of inclusion for children, it goes without saying. But nobody talks about the benefits for the parents. That we get to see Elin doing exactly the same as the other children. That she doesn't need to sit out of Sport's Day, that I can proudly show off the Sport's Day photo's like all my Mum friends. That she is not segregated by the fact she has wheels where her feet should be. She is in the school play and her class are taking part in the careers day, or the World book Day fancy dress, or taking part in imaginative play together, or the fun day at the end of term.
How can you explain what that means, as a Mum? Something that really upset me when she was a tiny two year old going off to Nursery was that everything I knew about primary school would be 'different' for Elin. Everything would feel 'alien' and she wouldn't get to do all the things my friend's kids were doing, the things I did when I was young, the things I was doing with my classes as a teacher myself.  But it turns out I was wrong and I can't explain how happy I am that I was wrong. Elin hasn't missed out on a single thing. I can't say anything meaningful enough to convey what Elin's attendance at this school has meant to us over the years. Her inclusion and her worth there. But I can say thank you.
Thank you for working together as a school to give my daughter moments like this, which make us cry when we see the photo in her home school diary because it's just so wonderful. Not only for her, but for us too. Look at the faces of these lovely boys during a "Grease" dress up afternoon-they are so proud to be with Elin! There is zero pity there. I've been told that one of them in particular has been her friend since they were tiny, actively seeking her out to 'look after' during shared school time.You see, when we see photograph's like this, we just don't feel so very different. We feel included.

***EDIT***  Before publishing this blog, I wrote to Mrs Thomas to ask permission to use the above photograph. In a move that typifies the thoughtful attitude of the school, I did not just receive a letter or phone call back from her. I received a phone call from all four boys pictured. As they took it in turns to come onto the phone and speak to me an EXTREMELY large lump formed in my throat! They told me that they would be 'very happy' for their photo to be used in my blog. They said they were proud to know Elin, that they felt lucky to be part of such a school, that they looked forward to visiting Elin and her friends. Playing with Elin and the other children is one of their favourite things to do at school they told me. One boy said, and this is a direct quote 'When I see Elin her smile just brightens up my day'. 

Wow.

Her smile brightens up our day, too.

Thank you.
xxxxxxx