Day Five

So, what do you want to know about infamous conquistador Hernán Cortés? (Spoiler - he was a bit of a bastard). 

What about waterfalls? I can tell you all about how they’re formed (and have executive produced my son’s very informative video for you at the end of this blog. HARD ROOOOOCCCCKKK!). 

Essentially, this enforced home schooling lark means that I am smashing the Year 6 curriculum (as well as my head against the wall at my son’s avoidance tactics). 

I’m also carrying out my own science experiment: Does lockdown cause exponential grey hair growth? (initial examinations indicate yes, yes it bloody well does).

I’m doing less well with my daughter’s learning.

My 21-year-old should be at college, on her Steps To Independence course, learning life skills, doing work experience, participating in tutorials, and being helped and encouraged by experienced staff in a safe setting with her friends. 

It’s specialised and tailored to her needs, because she - like everyone with Prader-Willi Syndrome - has learning difficulties.

As with several of the characteristics of PWS, the level of learning difficulties varies from person to person. Some are only mildly affected and are even able to take some mainstream exams, others have a reading and writing age many years below their own.

My girl falls somewhere on the mild to medium spectrum, illustrated perfectly by the fact that the vast majority of my 11-year-old son’s work is too difficult for her.

It’s hard. It’s hard to keep both kids focused and happy. So I’m winging it a bit. I’m cherry-picking little bits of online college work and letting her loose on BBC Bitesize lessons for much younger children (one science quiz involved a cartoon pug, which sent her into paroxysms of joy. If you don’t know why, you have obviously never met her, because if you had she would have shown you her tattoo of a pug in a doughnut).

I’m including her in some of my boy’s ‘wellbeing’ exercises and discussions, and I’m getting her to write film ‘reviews’ (which turn out to be laborious retellings of the entire plot, in the manner of: ‘and then this happened, and then this happened, too’. (Ask me about every frame of the movie Hotel For Dogs, go on, ask me...). 

She's doing word searches, watching Emmerdale, and going to the park on our daily walk, where she throws the ball for our labrador to fetch, and where she points out - every single time she praises him - that she loves him, but not as much as a pug.

She may not be like other ‘typical’ 21-year-olds when it comes to academic performance. But I think back to the painstaking efforts of some of the many professionals who have helped her throughout her life: the portage nurse who taught us games to help us stimulate her as a baby; the speech therapist and Makaton specialist who taught us how to use simplified sign language to encourage her to make her first sounds and talk; the teachers who used visual aids to help her communicate her needs and make sense of her day; the TAs who learned how to circumnavigate her stubbornness and find a different angle to get her to engage with a lesson, the volunteers at the Prader-Willi-Syndrome Association UK who were on the end of the phone when I was at the end of my tether. I look back and wonder and feel all the feels and thank all the thanks, and love all the love.

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Video is my boy's guide to how waterfalls are formed. HARD ROCK!!!!!!

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page. THANK YOU to everyone who has already donated! If you can spare just 26p, it would be help. £2.60 would be brilliant. £26 earns you special 'personal' rewards after this crisis is over. And I'm mulling over doing something silly at the end of this blog challenge if I am incentivised by enough donations. Hopefully this thought is far enough down in the small print to be forgotten about if I chicken out...

Book

PICTURE: Some of the Makaton symbols we used with our daughter

It’s hard to believe now - particularly on a day when my daughter tries out the ancient form of torture on me known only as Death By A Thousand Questions - but she had trouble speaking when she was little.

Prader-Willi Syndrome comes with a whole bundle of symptoms, one of which is hypotonia (low muscle tone). This can affect speech, as you need good control of your jaw, tongue, lips and palate to be able to speak clearly. (By the way, if you’d like me to, I can accurately demonstrate how a lack of muscles in this area can affect speech and cause unintelligible slurring - all you have to do is feed me a bottle of red wine).

When my daughter learned to speak, it wasn’t just physical hurdles she had to overcome. With a learning disability, she also needed more stimulation and tricks and techniques to encourage her understanding of language.

So my girl, already quite the social butterfly with her visits to her paediatrician, endochrinologist and physio, had to make room in her diary for speech therapy. And we all had to learn Makaton. 

I’d never heard of it. Annoyingly, though, every time someone mentioned this new word, all I could hear in my head was the music from that washing machine ad: “Ariston...and on...and on...”

Makaton turned out to be a kind of simplified sign language for children and adults with learning difficulties. It used hand actions and pictures to encourage speech.

I couldn’t get my head round it at first. How was using a sign to express what you wanted going to help you talk? Surely it would actually replace the need for talking?

I didn’t understand. And for a few months, after learning simple signs and pointing to symbols when we talked to our daughter, it didn’t seem like it was having the desired effect.

But of course the specialists knew what they were doing. They’d drummed it into us: don’t use the symbol without saying the word. So we didn’t. And although we started to feel like we were wasting our time, we persisted, and our daughter quietly took it all in. 

Then one day, she uttered her first word. Or rather her first part of a word.

She placed her palms together, and then fanned them open, looking up at me as she did so, saying: “Buh...buh.” She’d mimed the Makaton sign and sounded out loud the first syllable of her first word - book.

Video is the Ariston advert from 1987

Video is 60ft Dolls - Talk To Me