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Living with Cerebral Palsy 🍋🍋

Tuesday, 17 April 2018

No place like home?

Recently I was asked to write a review of the disabled facilities at Chester's 'Storyhouse' for the fab website 'Euan's Guide'. Euan's Guide is the leading disabled access review website in the U.K. It is an award-winning sight built by disabled people for disabled people and is also a registered charity.
 Euan's Guide aims to inspire people with limited mobility to try new places. The website was founded in 2013 by Euan and Kiki Macdonald, after Euan became a power chair user following a diagnosis of Motor Neurone Disease. Since Euan's Guide uses reviews from members of the public who have actually visited venues around the UK, it means wheelchair users can get an honest cross section of opinion about the accessibility of venues, rather than just what the 'official' websites for said venues state.
It can be frustrating and time consuming to rely on trial and error when choosing where to visit if you have a disabled person in your party. There is quite a distinct lack of information in general on the web regarding places with appropriate disabled access. Also, what works for manual wheelchairs may not always work for power chairs or mobility scooters and many web pages citing disabled access at their venue don't make detailed enough distinctions.
That's another reason why Euan's Guide is so handy, each review clearly states who was visiting and what their specific needs were at the time. As we are going to Edinburgh in the Summer, I will definitely be trawling Euan's Guide to see the recommendations for families in our situation. Euan's Guide states that is aims to remove 'the fear of the unknown' for disabled people visiting a venue for the first time and I think it has definitely achieved this aim with a wonderful vision by Euan and Kiki. It's not until you stumble across something so useful that you wonder why on earth you never googled it before!
Finally, the reviews on Euan's Guide are concise, honest, friendly and empowering. I would encourage anyone in our position to take a look and more importantly to add your own reviews to Euan's Guide, from coffee shops to museums, hotels, shops and everything in between. Sharing your experience might just give someone an invaluable helping hand in deciding where to spend their down-time in the best place available, wherever they are.
Reviews for Euan's Guide are super-easy to write and upload. The link below is my first review for Euan's Guide, of Storyhouse in Chester. Regular blog readers will be unsurprised that I highly recommend a visit! It is my own home away from home and the first place I found that I not only love in it's own right, but a place I can share with Elin too whenever we want to just hang out somewhere as a family. Not all outings have to be about a big mission or a big day out. Sometimes we want to just go and have coffee in a home away from home- somewhere where there is a supportive and accessible environment to simply watch the world go by in. Thank you Storyhouse for providing that for us. Thank you Euan's Guide for enabling us to share it :-)


Monday, 2 April 2018

Happy Easter!

Happy Easter everyone!
Elin has had a lovely first week off school. She’s been shopping and for a walk by the river. She’s seen family and friends and had a super productive physio session. We can really see that she is making small improvements toward working on her head control and balance now. It feels great to see even more progress by her lately, we are so proud! 
There has been good sitting and not so good sitting. But mainly good!
She has even managed cuddles with her favourite person! Caitlin is home for one week only from Drama College, since she has been asked to assist the current third year group with their dissertations, so she has to be back in London for the majority of the Easter break to rehearse. Their dissertations involve writing ,directing and producing a show from scratch which they then ask a handful of students from the first and second year to perform in. This time next year Caitlin will be preparing to graduate and it will be her putting together her own show! Eeeek! She has come home with yet another amazing termly report and the whole family is so proud of what she is achieving. She is working so hard. I think Elin just  wishesLondon was a little closer! 
Finally Elin had a fantastic session at The Movement Centre with the final fitting for her new standing frame, which we will be using in conjunction with a basic physio programme to gradually encourage and hopefully improve head control. It was a stress free appointment as there was no Dystonia in sight and Elin looked great in her frame. She has had some new boots and callipers which also work really well for her and promote a better foot position when standing than her current splints and boots. So it’s all looking good, now the hard work starts with daily standing frame sessions after school each day. On Thursday, Elin looked ready for the challenge! 
Hope you’ve all had a great Easter weekend despite the STILL appocolyptic weather! Paul and I celebrated our 13th wedding anniversary on Good Friday with a lovely meal out and a red wine list that was a little TOO good, so I was busy feeling the effects of that on Easter Saturday! Oops! But you know what’s good for a hangover? Chocolate eggs 😊 How lucky is that? 
Thanks for reading, have a great week.
Ruth xx

Thursday, 22 March 2018


Elin won the Easter Egg decorating competition!!
With 150 entries across the school, we were pretty amazed that she claimed first prize. Especially when we saw the quality of the others. I mean seriously they were AMAZING. There was an inspired replica of Jack and Rose on the Titanic (which lit up!), a Circus complete with tightrope walking egg (our favourite), a 'Mount Egg-erest" with an intrepid explorer egg, an 'Egg-quarium" with egg fish swimming in a tank being observed by egg children and lots of others which had hilarious egg-puns and all of which had a great deal of time and effort spent on them. It was so lovely that the competition captured the imaginations of so many of the children, I think these are the things you remember when primary school is a distant memory- I definitely remember doing one myself when I was young. The judges were from many different aspects of the school, including some children, and it seems the vote was unanimous. I think ultimately Elin won for the message her Professor Hawking Egg carried, as there was little to distinguish the skill and innovation of all the entries- they were superb. The idea that "It's not our disabilities, it's our abilities that count" I think probably touched the judges, and in a school like Elin's with so many amazing children beating educational expectations of them daily,  I suppose that is hardly surprising.
Anyway Elin was pretty pleased that she won. She was called into a special assembly and apparently when it was her turn to collect first prize the children were all super excited for her, clapping and cheering her. This was soooo wonderful to hear. Elin had been the only entry from Y Canol and I think it was great for the children in that assembly to see that she had taken part just like them. It doesn't surprise me that the children were so supportive of her win, it's what we've come to expect from her school environment, but it still managed to elicit a great big lump in my throat when I heard about it. I guess there are some things you just get used to accepting she will never experience, so then when she does it's just so lovely. She's even going to be in the paper!! I will include that photo here whenever it appears! She won a squeaky chicken toy and a headband and lovely Easter basket. She was proud as punch bringing them home, and we were as proud as punch to see her. A super Monday to kick off the last week of term, after a really gorgeous weekend for Elin. We are hoping the Easter break will be just as lovely for her, and for all of you!
Well done, Elin.

Saturday, 17 March 2018

Egg-cellent Professor

Elin’s had a much better week this week after suffering some pretty prolonged Dystonia last week. It’s been so nice to see her so relaxed again. She did World Book Day last Friday not as Paddington Bear but as Veruca Salt from “Charlie and the Chocolate Factory”. I didn’t think it would be as good but on the day she actually looked amazing!! 
We had a nice Mother’s Day with our first visit of the year to our most favourite place- the Zoo. It was good to get some fresh air and even though Elin’s dystonia was still plaguing her she had a good time being nosey and looking through the new clean glass in the penguin enclosure!
This week brought some sad news with the death of Professor Stephen Hawking. In his lifetime Stephen Hawking did much to dispel pre-conceived ideas about disability. The fact that his body was so affected by his condition, but his mind remained one of the sharpest in modern times, coupled with his spirit, humour and refusal to be a victim made a lot of people consider their own prejudices against anyone in a wheelchair I think. I was saddened to see a great deal of online debate about whether people should be saying he is now ‘free’ of his disabilities. Many disabled people themselves were very angry with this idea, as they believed it to be insulting. They argued it was his wheelchair and voice/computer that gave him freedom. Others believed despite his bravery and attitude in life you could never truly believe he wouldn’t have changed his condition in life if he’d been able- after all, they reasoned, who would really choose to live in such a restricted body? I was just left wondering why everything has to be argued over these days online and why people can’t just have their own opinions without feeling the need to justify them to strangers and get into heated debates via the web. I suppose it’s a very emotive issue and leads to complex questions about what you think about the afterlife. For my part I just felt sorry for the loss of such a great mind and man, but glad that he’d been able to defy early predictions about his life by doctors for so very long and that he challenged stereotypes on a global scale with such style. 
This is why when Elin’s school said they were holding an Egg decorating competition for Easter, we thought we’d pay homage to Professor Hawking with a topical entry entitled “Most Eggs-cellent Professor”.  I’ve never attempted one of these before but was quite pleased with the outcome, as was Elin!  She especially liked the fairy lights in the dark! She worked hard fingerprinting the planets and black holes and title plate. It was really nice to do some craft together. Results are announced next week but by the look on Elin’s face I think she feels like a winner anyway!
Have a great week folks, remember to “Always look at the stars instead of down at your shoes”
Ruth xx
Oh and Elin would like to wish the best Daddy in the entire universe a very happy birthday for Sunday! If the “Beast from the East” can hold off we are hoping to go out for lunch and maybe a nice stroll if her dystonia stays at bay.Either way I know Paul will be happy as long as he has his best friend by his side! (To clarify his best friend is definitely Elin and not me!! Ha!) 
 Playing with an Easter shaker Elin made at school 💛 Thanks for all you do best Dad EVER 💛

Tuesday, 6 March 2018

So why don't you work?

Yes, someone did ask me that outright once and then actually argued with my response as if it had anything to do with them and as if it was their sole mission in life to persuade me to go back to work.
Definitely fodder for a blog post, I thought.

A perfectly average week in the life of us (this is completely mundane information but multiply this by 52 weeks of the year and you get my drift)

Meeting 9:30am school w/Nurse.
Meeting 2:00pm w/Elin's Case Manager.
Scheduled phone call 4:00pm catch up and discussion of needs with Occupational Therapy.
Appointment at home 4:30pm Physiotherapy.
*No appointments!*
Drop off prescription at Chemist.
Phone Orthotist to check on boots progress.
Send email to Elin's case manager with links to upcoming equipment needs.
Chase appointment request with school inclusion officer via school.
Email Ed Psyche to confirm meeting at school next week.
Appointment 3:45pm w/new social worker.
Chase G.P as to why Medazolam medication still hasn't arrived.
Email O.T to confirm physio can meet here with her. Remember to phone school to check O.T can go in before this to see Elin at school.
Phone incontinence service to check when next delivery of nappies due (as we will run out if I miss the fortnight-before order date).
Pick up and check medications from Chemist.
Post Elin's updated school records to case manager.
Appointment 3:30pm Orthotist intermediate boot fitting.
Take delivery of Elin's feeds and giving sets for the month.
Drop off another prescription.
Chase G.P referral for specialist Dystonia appointment still waiting to hear about.
Appointment 3:00pm - Pick up Elin from school and take to Hippotherapy.

Night Diary.
Elin wakes up usually around 2am for a change of nappy and sometimes a  change of sheets too.
Back to bed and pray Elin drops off quickly again.
Possible second wake up around 4:30am, may or may not go back to sleep.

Other appointments on other weeks in addition to those above include:
Cranial Osteopathy.
Dietician review.
Paediatric Neurologist @ Maelor.
Hips/Spine reviews @ Alder Hey.
Orthopedic Spinal etc review @Maelor.
ALAC wheelchair services.
ALAC Orthotics/Splint castings and review.
Specialist Dentist.
Movement centre @ Gobowen/Standing frame fittings.
Hand Splints reviews.
Home hoist and sling checks and reviews.
Occupational Therapy home equipment review.
WAV Vehicle repairs (chair restraints etc)
Bath repairs and review.

Please understand that none of the above is in ANY WAY a complaint. I am delighted that Elin has access to all of the above and forever grateful to all of the professionals in her life for their care and dedication to ensuring her quality of life remains the very best it can be. But I just wanted to share the reasons why I choose to *currently* not add 'work' into this mix, since if I am asked about it I annoyingly find myself struggling to justify my choices articulately. I think I feel guilty. I don't know why. Guilt for not contributing to society in some way? Guilt that I'm fortunate enough to have the option? I don't know.  Then I hate myself afterwards for caring so much what anyone else thinks in the first place. It's taken me a while to realise I don't actually automatically owe people an explanation of why I chose to give up a job that I used to love. This post is definitely not meant as a justification either, but I finally felt ready to honestly and openly share some of the reasons why, as a parent of a child with severe and complex disabilities, going to work doesn't really fit into my schedule at the moment and doesn't for many others. I did it for eight long years following Elin's birth and in the end I couldn't make it work (I made myself ill trying, both physically and mentally). Some people do make it work of course and they are AMAZING. For me right now, the kind of teacher I could be alongside the job of being Elin's Mum is not the kind of teacher I would want to be.  Teaching simply needs more dedication and enthusiasm than I am able to give, especially in the current educational climate (and I could write a whole other blog post on that subject believe me). I loved my job more than anything once upon a time and leaving a school I called home and a staff that were family was beyond difficult even though I knew it was 100% right at the time. It's taken me 18 months to be able to admit "I USED to be a teacher" instead of "I am a teacher" because of some weird misguided sense of shame I carry around about being unemployed. I was 26 years old when I had Elin, I was always going to go back to work full time after having her, I never questioned it. I had a career. I looked sneeringly down from my ivory tower of pregnancy on Mum's who didn't work- I couldn't imagine it (I hate that fact now-maybe that's partly where the guilt comes from). Things change. "Life is what happens whilst we are making other plans" as John Lennon so accurately observed. It will always hurt, always be yet another "Sliding Doors" moment in my lifetime, but I am soooo thankful I have had the ability to make this choice, which works best for us right now.
Perhaps one day things will change again. Learning to live in the moment (as a bona fide control freak and someone who likes to plan)  is something I've been trying to train myself to do for the last ten years. I think I'm slowly starting to manage it.
I used to be a teacher. Now I'm just Elin's Mum.
And I love it.
Thanks, as always, for reading.
Happy Mother's Day to all the Mummy's out there if you work full time, part time or stay at home. You're all heroes. 



Thursday, 1 March 2018

Elin's Diary #8

Last week was pretty uneventful really, as weeks go. But we like uneventful sometimes, especially after a busy half term! Elin had her usual appointments, but swapped Hippotherapy for Orthotics which was necessary but nowhere near as much fun. Boo! I went to London for weekend to visit family. Unfortunately, we think visits to family will have to be done this way (i.e in relay) for the foreseeable future. The journey down with Elin at Christmas was a bit of a nightmare. When Dystonia makes it impossible for her to sit, a five hour car stint becomes pretty impossible. What happens is that she ends up working herself into such a state that you just can't bare to put her through it. Red face, lathered in sweat, breathing even becomes compromised for her. It's awful (and scary) to watch so goodness knows what it's like for Elin. The last time we attempted the train down instead was a nightmare too so for now it feels like there isn't an easy solution. This is obviously really upsetting since a large chunk of our family live in London. We are still waiting for a referral to Dr Lin, Dystonia expert at The Evalina Children's Hospital and it can't come quick enough. Elin's seating issues have affected her life experiences for way too long (meaning forever!) and now she is getting big the issues are amplified tenfold. Simple things like going away for a couple of days as a family can be traumatic for Elin. It's a part of her condition I find hardest to accept. She so loves company and different voices and new experiences but it feels impossible to expose her to these things when she can't sit in a chair or be in a vehicle. We just have to live for the times when she can manage it, and there are times, I just wish it wasn't so inconsistent for her.
Anyway as I enjoyed a lovely night in London (it still blows my mind that I can be in London in a couple of hours from Chester- it literally feels like you've landed on another planet when you get to Euston), Elin played her Daddy up something rotten and kept him up pretty much all night. Oh dear! Paul always says he can never sleep when I'm not here anyway, I think he feels the weight of responsibility of keeping one ear out for Elin waking up (usually my job) but I think it does him good to know what it's like to be 'on call' all night! In fairness he is as wonderful early morning as he is hopeless in the middle of the night so this division of labour means I get a lie in on a Saturday and Sunday and in school holidays which I'm happy to trade for a full night's sleep the rest of the time. I really, really don't like early mornings!
So I got back from London on Sunday and Elin slept really well (ha!) then it was back into the school routine again except this time with the unwelcome guest, the 'Beast from the East' !! Yep, this week we've had snow falling snow on snow, snooooowwww on snoooowwwww and it really feels (as if it didn't before) like a truly bleak mid-winter.
A Dystonia free happy journey in the car to the Cranial Osteopath this week, complete with home made, hand knitted Giraffe hat!! Erm...not by me obviously. I can't even hem my own trousers let alone knit, despite being quite adept when I was around nine years old thanks to my Nan. I think I even made a blanket once. I guess the novelty wore off! Anyway the visit to the Osteopath was a big success, Elin loved it and slept ALL NIGHT afterwards. Worth every penny. We've also noticed she's been breathing better since her visits started in December too. I always err on the side of caution/scepticism when it comes to alternative therapies but I'm open to try anything because I just don't think it can possibly harm. Cranial Osteopathy worked for sure when Elin was a tiny baby and I think it's working for her again, in a gentle and subtle way. Anything that makes her feel relaxed is a bonus in my eyes. I think she deserves a bit of a pamper now and then!
Following this, the weather sort of went off-the-scale crazy. We started to feel like we were in "Dr Zhivago" each time we went out of the door (minus the cossacks). This led to Elin having a self prescribed snow day today and it's not looking good for tomorrow either...
Elin kept toasty warm inside the cottage!! I hate her missing school but in temperatures of minus five and roads to us covered in snow and ice it's sort of inevitable. Sometimes you just have to give in to the elements.
Being off school gave us time to try our "World Book Day" costume on. Elin's school isn't doing it until next week but I thought we might as well have a practise run. I'm glad we did! Her costume looked GORGEOUS ...but it was too small! Arghhhhh!! Also when you have a child that lies/sits pretty much all day a giant stuffed hood maybe isn't a good idea. Neither is a onesie (that's too tight) when you factor in nappy changes. So it's back to the drawing board for me (fear not I have an idea- Don't panic Captain Manering!!) but of course I have to share the photo with you because it's just too cute not to. I think someone special to us who might be reading this would love this costume in particular, such a shame it wasn't to be. You have to imagine it, of course, with a lovely vintage suitcase and a plate of marmalade sandwiches....
How sad that Paddington Drake wasn't meant to be! Tune in next week to find out what the more sensible alternative is (disclaimer: it's not as good). Damn you Cerebral Palsy and your costume restrictive issues! Still, we'll alway have this amazing photo and I got to spend the afternoon cuddling a real life bear so it's not all bad.
Hope you all have a great week, stay safe in the snow if you've got what we have!
Thanks for reading as ever,
Ruth x

Saturday, 17 February 2018

Half Term

Hurray for half term and lazy mornings! Elin has had a lovely week, she even managed to do some super sitting in her chair (and some not-so super sitting too of course!) so we're really proud of her.  The week kicked off very nicely with a visit from Caitlin who was home from Drama School in London to celebrate her 20th birthday.  Of course, Elin was absolutely delighted and had an added treat of actually having Caitlin putting her to bed, which she loved. I felt really sad when I realised that Caitlin wouldn't be there when she opened her eyes again in the morning, Elin just adores her so much it's hard to contemplate what her little mind is thinking when Caitlin is not around. I know that Elin very much lives in the moment and so I try to remember that but still, seeing them together and knowing they have to be split up again tends to make me a bit emotional! I sometimes worry that Elin is a bit lonely on the weekend or in school holidays with only Paul and I to play with.

This is what Paul came back with from the kitchen when I told him we needed a candle for Caitlin's cake!!!!!
Elin so enjoys company and especially being around children- which we saw yet more evidence of visiting our family in Yorkshire again this half term. At the start of the week we spent a lovely (but snowy!) couple of days with Elin's nephew, Gruff,  who you might remember from past posts :-)   Gruff is the son of Elin's big brother, Gareth, and his gorgeous wife Marianne. Gruff and Elin are pretty good buddies :-) Anyway this visit, Gruff was especially loving and Elin was especially happy about it. Gruff did not leave her side, whether he was 'brumming' his cars over her face, playing peek-a-boo with her, or basically just cuddling her to death. It was GORGEOUS!!

Gruff just playing  bit of body percussion on Elin!!

Big cuddles

When we returned from Yorkshire we decided a rainy Wednesday would be a good day to take Elin to the pictures. She hasn't been for ages and with here dystonia playing up a bit lately we weren't sure if she would enjoy it. Wow we were so wrong! She loved it and for the first time EVER she sat in her chair through the entirety of the film! We saw "The Greatest Showman" hoping that a musical would keep her entertained and it really did- I don't think we've ever seen her laugh so much in the Cinema!! She absolutely loved it.
Elin then had an important appointment on Thursday at the Movement Centre in Gobowen. This was an appointment following on from the one I blogged about at Christmas, to be fitted for a new standing frame which she will use for 30 minutes a day at home to do focused head control training. The frame fitted like a glove and Elin looked very straight in it which was lovely. However, we are having massive issues with Elin's feet at the moment. The tendons in her ankles are very tight and it's been increasingly difficult to get Elin's feet anywhere near flat. Her current splints and boots accommodate this curvature but do nothing to correct it. This means because she is so vertical in this particular frame the feet end up resting in a very bad position and the splints put too much pressure on her skin and cause pain and markings. She's basically standing on her toes :-(Staff at the Centre are going to work hard with physio's and the Orthotist at Wrexham to see if we can get some more corrective splints cast just for wearing in the frame, to encourage her foot to be more flat and in a better position. It was a shame we can't start the therapy in the frame straight away but we were all agreed the benefits would be minimal unless her position and comfort are paramount. 

 Elin also managed to visit her Great-Grandad and Great Nanny this week but I stupidly didn't get any photographs! Finally Elin has just been rounding off her busy half term chilling out in her room. We've seen some more good sitting in her house chair (and again, some not so good!) she has managed over an hour at least twice this holiday! Wow!
We even managed to find some time to paint Elin's nails an awesome sunshine yellow colour!! Better make sure we remove it before Monday, even though it does actually match her school uniform. Strike a pose, Elin! 
So, it's been a lovely holiday (even though I seem to have acquired a nasty bug- fingers very firmly crossed that Elin doesn't get it!) but I think Elin will be glad to go back to school on Monday for lots of fun with her friends. 
Just including this picture because of this amazing dress!! It was a Christmas present, what a lucky girl!!

Hope you all have a good week folks. Until next time.

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