“Episodic epistolary events.” by Wyn Evans


Oh, hello! It’s been a bit mad here this summer. As a full-time dad my days have been spent keeping The Girl happy, busy, and challenged. It’s meant that my ‘writing-space’ has  changed – from having whole days to give to it, this piece has been written episodically, when something interesting happened. Here are some of our summer’s snippets.

21 July. When you are shopping with your daughter and you say a happy “Hello!” to a man and woman you’ve never met before, just because their son has Down Syndrome.

23 July. Good morning from Aberystwyth’s Marine Hotel. Fab meal last night at Gwesty Cymru, lovely walk across miles of sea front, some nice pics, comfy room, no dogs, lie in. The Boss ‘n me are minted! And now we get to see our Girl who was sleeping-over with one of her Besties. Life is good.

25 July. HuffPo blog! My first blog for the Huffington post can be found here1. PS please like/follow my huffpo blog page if you get a couple of seconds spare to let them know the piece has some readers and followers. Thanks.

26 July. Sports and Speech Therapy course: The Girl is two days into a week-long course run by the excellent “21 Plus” supported by Sports Disability Wales. There are some fifteen or so kids with Down Syndrome, aged from toddlers to kids in High school. There are two OT therapists there all week, four speech therapists, fifteen or so speech therapy students (one to each child) and specialist instructors in various sports. There is something truly joyful about seeing the young people together playing and supporting one another. There is a lot of laughter, and the kids look out for each other – all those who ‘look like each other’ whilst also looking as individual as the independent little fellows they are!

27 July. Routinely special: This morning The Girl said this to The Boss: “mammy, yesterday I hurt my elbow in sports club, can I have some magic cream [germolene] please?”. I didn’t think twice. She’d scraped her elbow and it did indeed need some antiseptic pain-relief. It was only a few minutes ago that I realised that I had taken a very very big thing for granted. There’s still much more to do to generalise and deepen her vocabulary and correct usage, but this was a long sentence, with correct use of tense, conveying information and seeking redress. The only thing I can cavil about is the use of ‘can’ for ‘may’ (and I haven’t taught her that yet!). Do you all do that too? When positive growth and development passes you by under the radar and only later slaps you in the chops?! A year ago I’d have been singing that sentence from the rooftops. Our wonderful kids who continually take us by surprise.

29 July. Sports and Speech Therapy course (2). Well, the wonderful week-long course ended this afternoon. I spent today on it too and received feedback from the speech therapist, based on the therapist’s week-long interactions with The Girl and on observation of her interactions with her peers. Insightful aint the word. More like “WOW! how did she see that and how did she draw that inference and how can it be so spot on?”. So much learning and so many useful pointers for The Boss and me over the next few months. I learned that good speech therapy isn’t about phonemes and vocab and pronunciation (all of which it IS also about of course) but about helping prepare your child for the next stage in her life, emotionally, intellectually, everythingly. It is about drawing the correct inferences from your child self-talking – to know when it is ‘normal for DS’ and positive, and also to know when it might be suggestive of upset or difficulty. Scales fell from eyes today and we were pointed towards tools that can help build on the positives and tackle the negatives.

29 July again. Speech therapy and sports camp (3). I just received this email from [The Girl’s] speech therapy student 1:1 helper at this week’s camp: “Hi, I hope you’re well, I just wanted to send you a quick email to let you know how much I enjoyed spending the week with [The Girl]. It was a pleasure being able to make her giggle every time we played Rock Paper Scissors because we both picked scissors, or being able to take part in the games she played with her friends. It was nice to see her grow in confidence as the week went on (even though I felt a little lost at times when she would do things independently). I thoroughly enjoyed this experience and commend you for raising such a kind, thoughtful and well mannered girl. I have no doubt that she’ll grow into a strong and successful woman and I’m grateful to have been given the opportunity to have helped her for a short period of time and I hope to see her again next year. Best wishes”.

31 July, a conversation. “I told you!” – Saturday morning.

Boss: come on you’ll be late for judo.
Girl: not going to judo.
Boss: you love judo. Take your dress off and put on your judo clothes.
Girl: No.
Boss: come on we’ll take your clothes and you can change when you get there.
Girl: only if I can come home if I don’t like it.
Boss: ok.

The Girl loves judo. 3/4 of an hour later, after first half of judo class. Snack break… The Girl: Bouncing and grinning: “see! I told you I love judo!”

2  August, practical science. “It works!” Mid morning today. The Girl had gone upstairs to play. It seemed very quiet so I wandered up to check things out. She is sitting in the middle of the master bedroom floor with the cold-air fan on full power blowing into her face and chest. Me: are you OK? Were you too hot?” Girl: I’m testing out my new fleece – it works! And, as she said, the fleece she bought yesterday kept her warm and beat the fan.

8 August. If you believe that those with Down Syndrome are valuable and complete human beings – just like the rest of us who do NOT have an extra (3rd) copy of our 21st chromosome, read this:  ‘Appeal to the United Nations to stop discriminatory use of prenatal genetic screening aimed at eradication of people with Down Syndrome and other groups.’2 For me this is a must-win fight

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10 August. When things you’ve said come back to bite you! “Come on dad, get a move on. Don’t just stand there. We’ll be late for swimming!” (Though we weren’t late!)

10 August, again.

The Girl: I be older I have a baby.
Me: WHEN I AM older I WILL have a baby.
Girl: When I am older I will have a baby.
Me: Will you? A boy or a girl?
Girl: A girl, called Lucy. My mum be her Nanna. You be her grand-dad!
Me: I’ll be her grand-dad will I? And mam her Nanna?
Girl: Yes!
Me: Do you think I’ll be a good grand-dad?
Girl: [Hugs me] YES!!

I very much hope that she will be able to have a child and that I will be here to help her. And The Boss too. Two things The Girl has consistently wanted are to be a ballerina and to have a baby. She is so full of love and learns so quickly.

11 August. Went to the park took pics of The Girl posing.

12 August. “Hi Dubai!” The Girl and I were just getting her a gingerbread man from the bakery at Sainsbury’s when we were approached by two ladies and two pretty girls aged about 10. “Excuse me interrupting you but I follow your Blog, from which I recognise you. We live in Dubai and my daughter has Down Syndrome”, said Clare, introducing J**** and H***** and their Nanna, who lives in Caerphilly. Immediately, The Girl and J**** gave each other a hug. Thank you Clare for following us! Hope you have a great stay and a safe journey home xx

August 16. A moving story? The ‘for sale’ sign is up so l guess we really do intend to sell our house3. We don’t have another to move into as yet (as and when ours sells), but hope to be in the position of ‘cash buyers’, without a chain to worry about. With the diagnosis of my Parkinson’s has come the realisation that staying on top of a three-storey house will prove increasingly problematic. So it’s time to trade down and make life easier for ourselves. With luck, it will not take forever to sell and we shall stay in our ‘beloved CF23’ (as our friend, Ed, puts it).

So there you have it, a snapshot of our summer. And, next, we go to Bluestone in Pembrokeshire for a week, so wish us good weather!