Extra-Ordinary is changing its name to The Odd Sock Diary (and other stories), to reflect that it is the personal blog, or diary, of a mum whose child has Down’s Syndrome (and who occasionally gets a bit of writing done). Here’s how the new ‘About’ page reads:
My existence is one that many people would reject as too dismal to contemplate – simply because it involves being the full-time stay-at-home mum of a child who has Down’s Syndrome: but I’m defiantly happy with my “terrible” life (yes, I do mean defiantly).
Because it isn’t terrible at all.
I didn’t expect to become a mum again at the age of forty. When the doctor told me that my new baby had Down’s Syndrome I DID expect developmental delay and learning disability: I DID NOT expect a lively and inquisitive little boy with a well-developed sense of humour.
But that is who we got – Freddie: full of beans, full of mischief, affectionate and bright. Yes, bright – if bright means having an inquiring mind and being keen to learn; developmental delay and learning disability notwithstanding.
Something else I did not expect, after having a child with Down’s, was that I would become a graduate at the age of forty-eight (Creative Writing, First Class, with Honours, and taking the prize for Outstanding Acheivement), or that I would launch into a career as a freelance writer, which allows me to work from home, and when it suits me, so that I am always available to care for Freddie. I’ve written for as long as I can remember: even before I knew how to hold a pencil and form letters I made up stories in my head. The difference is that now I have the credentials to prove I’m reasonably competant at it.
Life has changed for the better in many ways since Freddie was born, and I would definitely number myself among the 79% of parents who report feeling MORE positive for having raised a child with Down’s Syndrome. So, if it’s martyrdom and misery you’re looking for, you’ve come to the wrong blog.
In The Odd Sock Diary I share my everday experiences of being mum to Freddie, hoping to help dispel some of the misconceptions surrounding what a diagnosis of Down’s Syndrome means to family life. Because so far, life with an extra chromosome has been pretty … ‘normal’. I also share my writing life, too – which is almost certainly rather less normal.
The ‘odd sock’ of the title was inspired by a visual representation of the Karyotype for Down’s Syndrome – the chromosomes look like pairs of stripy socks – but on the 21st chromosome there are three socks to the pair.
I do not pretend to be offering learned information or wise advice. I am not an expert on Down’s, or anything else. I leave that to the professionals.
This is only one woman’s story. As such it will not, can not, reflect everyone’s experience.
I think I was judged yesterday – we were judged I should say. I was in a cafe with Freddie, and he was acting up as he often does at mealtimes, but I was dealing with it in the way I find works best, which is quite low-key.
I heard a voice somewhere in the cafe declaiming (obviously to a child), rather louder than seemed necessary: “… but you’ve been good enough to get presents from Santa, haven’t you?”
Probably I was just being paranoid – so I’m glad I disobeyed my first instinct, which was to stand up and say: “Good job Santa’s not a judgemental ******* like some, then!”
Santa takes individual circumstances into account. Which is what I have to do; so, although with my older children, if they had acted up, I would have threatened to cancel that afternoon’s visit to the Panto if they didn’t behave, I didn’t do that with Freddie.
Freddie wouldn’t be in the least concerned with that. If anything he’d be quite happy to be taken home; he’s a proper home- body and, if anything, needs to be gently encouraged out of his comfort zone to try new things.
As it happened, once we were out of the cafe he was as good as gold. He walked really well from there to the theatre, he didn’t flop and drop once.
We were on our to the first ever ‘relaxed’ matinee performance of the Regent Theatre’s annual pantomime, in Stoke-on-Trent.
During a ‘relaxed’ performance, the house lights are left on low, strobe lighting can be removed, loud noises are reduced or removed, and making noise or moving about during the performance is not discouraged. There was even a notice in the toilets said that the hand-dryers had been switched off for the duration of that performance.
Before Cinderella got properly underway, Ugly Sister Beyoncé (Christian Patterson) came on stage to explain to the audience the special effects that would be used during the performance: each one was demonstrated, and the crew responsible for them introduced. He explained the cast understood that some people might need to get up and leave, and come back, and that was OK, they wouldn’t be offended; and if some people needed to watch through iPads or phones that would be OK too, provided they weren’t recording. Then a screen came down, and there was a countdown to the start of the show.
There was, perhaps, slightly less audience participation, and the pyrotechnics were toned down a little, but apart from that the experience differed little from the traditional Panto experience. There was visual humour and slapstick galore, and, as always, some jokes that worked on a second level for the grown-ups. Certainly the magic and that distinctive pantomime ‘feel’ were maintained throughout (my favourite bit was the flying horse that pulled Cinderella’s pumpkin carriage into the air above the stage).
It’s the magic moments like this, the Christmas pantomime, that new parents look forward sharing with their children, and these are the kind of things that ‘special needs’ parents can feel cheated out of. Being able to go to the theatre might seem trivial to grieve over in the grand scheme of things, especially compared to the challenges that the families of people with additional needs and disabilities can face; but sometimes, when a child’s life is made tougher by those needs, such things, positive quality experiences, take on an added significance. Everyone enjoys the magic, of course. But we need it.
The audience wasn’t made up entirely of children and their ‘carers’, though. There were adults, too, for whom the ‘relaxed’ performance was more comfortable. Among these adults were some very elderly people. I saw a group of them later, being assisted into a minibus outside the theatre. It struck me that perhaps they were residents of a facility caring for those affected by dementia. This called to mind a talk I attended recently as part of the LiveAge festival, on literature and ageing, and how traditional, well-known poetry and song, the rhymes and tales of childhood learned by heart, can be therapeutic for elders whose memories of long-ago are sharper than their grasp on present-day reality. Panto falls well within this catergory – although they are reworked and updated to include topical matters, the basic details , the tropes and traditions, remain, and may recall those memories carried in the heart, long after the mind has unravelled.
There may well be sound economic reasons why not every performance can be conducted in this way, but I do hope that it will become standard practice to conduct some performances from each run in this way.
Panto is a form that both reaches back into the past and forward to the future. And is perhaps the great theatrical leveller – it has something for everyone, and therefore, should be accessible to all. So I’d like to say a very big ‘Thank you’ to the Regent Theatre, and to the cast of Cinderella, for making the magic of pantomime accessible to more families this Christmas.
Freddie was as good as gold throughout; what’s more, it held his attention – no mean feat in itself. We both enjoyed the Panto immensely , and I particularly enjoyed the feeling that our outing was ultimately a success – Freddie had tried something new and loved it, and I had been able to relax with no fear of being judged by others, and if I’m relaxed, Freddie is more likely to be relaxed and reasonably well behaved.
I think the fact that I didn’t witness any disruptive behaviour is significant – the whole atmosphere was designed toto minimize the causes of such behaviour. And that makes a neat point about how society itself is equally as disabling as any ‘condition’ or ‘disability’.
So, that’s Freddie packed off to school for the last day of term, a turkey dinner with his chums from Class 3, and his FOURTH Christmas jumper day (all fundraisers). Oh well, at least he’s getting his wear out of it. And he does love a Christmas jumper – here’s an old post about Freddie and his Festive knitwear: https://kerryfender.wordpress.com/2016/10/06/fashion-advice-for-the-nipt-generation/
I swear Freddie is the easiest member of my family to deal with. He is often by far the most attentive and sensible of the lot.
Back in October Grandad announced his plan to order a (rather extravagant, I thought) gift for Freddie’s headmistress, since Freddie would soon be leaving the school. I pointed out that the school year runs from September to July, that he has another three years in the school after this one (that had only just started), and in any case has less to do with the head than many other members of staff. But my words fell on deaf ears, because Grandad turned up a couple of weeks ago bearing said gift, with instructions to present it to her as soon as you like. It has been sitting in my kitchen ever since while I get around to composing the required explanatory note, and to buying the gifts I now feel obliged to provide for his actual class teachers.
I don’t usually buy gifts for the teachers at Christmas, I just send cards, otherwise it all gets a bit expensive.
Anyway, I found some rather nice looking, but inexpensive chocolate teddy bears in the local shop that I thought would be acceptable. But upon digging out Freddie’s class list so that he could write cards out before helping me wrap the teacher presents, I discovered that there are actually four members of staff in the class, not three as I thought, leaving me one teddy bear short of a festive picnic. That’s four members of staff to nine children – I’ll just leave that piece of information there for anyone who thinks I’m selling my son short by choosing SEN school.
Feeling crummy and in need of an early night, I asked Daddy if he would please go and get another one of these from the shop.
Off he went without a mumble or a moan, bless him, he is good to me; and I got on with feeling relieved that I’d be able to get them wrapped and sent in tomorrow, because Sod’s Law dictates that if I don’t Freddie will come down with whatever lurgy I’m developing and be off school for the rest of the week. Only a few minutes later, Daddy was back.
‘They didn’t have any rabbits,’ he shouted up the stairs.
‘So I got a Santa.’
‘But I’ve crushed it’s head.’
How? It’s in a ******* box?This is why Freddie is the only one allowed to help me pair up the clean socks.
This is my boy enjoying life – enjoying the life that some women ‘selflessly’ choose to ‘spare’ their unborn children from. If images of people with Down’s Syndrome being happy offend you, you need to ask yourself: ‘what is it about their happiness that offends you?’ ‘What is it about their happiness that you fear?’ Are you afraid that they, with all their perceived imperfections, have achieved something that YOU are not capable of?
Or is it something else?
Go on, ask yourself …
When your candlestick becomes a carousel …
Freddie is ‘suffering’ from more and more frequent bouts of imagination.
We’ve been waiting a long time for this skill to develop (trust me – imaginitive play is a skill, and an important one). I did worry that he might never develop it, especially since he tends to choose to play alone rather than cooperatively with other children, although we, and his school have tried to encourage this: he will play quite happily alongside others, though.
I have spoken to the LD nurse from CAMHS about the possibility that Freddie could have autism traits. She brought along the basic assessment that her Psychologist colleagues use, and we went through it at home. Afterwards we both agreed that it’s design didn’t really take into account children who already have developmental delays and communication difficulties due to other, specific causes.
I asked her what the likely plan of action would be if he did have autism traits. As CAMHS are already involved, and Freddie already attends SEN school, she explained, then any course of action wouldn’t differ much from what we are already doing. So we decided not to pursue a definitive diagnosis at this point in time.
I’m not sure whether his lack of play skills is attributable to autism tendencies, or to his developmental delay, which is more profound, perhaps, than it first appears to be. I not sure whether or not the distinction matters, now that we know that he can develop these skills.
Some people take time to grow into their play skills. Others take time to grow out of them.
#notsuffering #worldWITHdowns #lego #downssyndrome#mummyblogger #pblogger #SENblogger