Three years ago I hosted a series of guest posts for Down Syndrome Awareness Month. One of them was by Sarah Stevens, who has kindly given us an update.
A LIFE LESS ORDINARY – WHAT HAPPENED NEXT…?
Time.
It flies by, in the blink of
an eye.
In this increasingly bonkers world that we live in, days merge into
weeks, weeks into months and before you know it, it’s Christmas again. How is
it possible that the subject of my original blog turns eight next month?
EIGHT!!!
I must confess that the writing of
my original post had more or less completely vacated my headspace. Then by
the power of Facebook it suddenly popped right back in there - ‘on this day’
inviting you to review and share your memories.
There it was, staring up at me from my shiny iPhone6 (latest toy, still
rather precious about it…), along with all the wonderful comments and praise it
received at the time. I clicked the link and read it again, for the first time
in three years or so.
And a single tear rolled down my cheek. Not because it
made me sad, for I am still proud of it as a record of those early days of this
special needs journey. But just because it made me realise how much all our lives
have changed since then – and once it was shared again, an update was soon
being requested by all and sundry - so here goes….
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| George is now 7! |
Here he is.
George David Stevens –
now 7 years 11 months old and on the cusp of entering his eighth year in this
world. Someone asked me recently whether he is what I expected. What a stupid
question. I’ve never had an almost eight year old child with Down’s syndrome
before, how am I supposed to know what to expect?! What I do know is that it is
almost pointless to read any sort of ‘official’ literature surrounding Down’s –
we threw the textbooks out when it came to George a long time ago.
He remains
something of the enigma that I described in my original blog; his reading
ability is astonishing - put anything in front of him and he’s away. But ask
him a question about what he’s read and – unless it is a Spot story or The
Gruffalo – he will hide his eyes and say ‘ERM’ very loudly. Like any child his
age, he’s got the avoidance strategies cracked. He can recognise three and even
four digit numbers (particularly if the latter if his new high score on 100 pin
bowling on the Wii), yet ‘more than’ and ‘less than’ often still evades him.
His skill in navigating the iPad puts all of us to shame, and if he can’t make
himself understood through speech or signing then he instead offers to tap what
he wants into Google to give us a clue. Google. WHAT?!?! I didn’t even know
what an e-mail was until I went to University. He would spend hours on (a
filtered version of) YouTube if we let him. But he still likes watching ‘In the
Night Garden’ and ‘Bing’; thank the Lord we’ve finally moved on from ‘Something
Special’ (although Justin – if you happen to be reading this – thanks for all
the free babysitting mate!)
His school journey has also been something
of an interesting one so far. Those of you that read the original blog may
recall that we chose the mainstream option for George. He started at our local
infant school, with a full time Teaching Assistant that he truly and utterly
adored – he still loves his Partridge. Down’s syndrome is quite probably one of
the most complex forms of learning difficulty that you are likely to
encounter in a mainstream school; indeed, his Reception teacher could simply
not fathom how this child could read, recognise number and letter sounds, yet
was still wearing nappies and could not string more than two words together
consistently.
He very
definitely didn’t fit the ‘mould’ of what the school was used to, and this
caused a problem in itself. All of a sudden different resources, strategies and
outside agency help was called for. Some of this was embraced, some not. Some
staff were willing to just go with where he was and mark progress, others
worried because he wasn’t matching the attainment of his peers. I’m fairly sure
he spent more time ‘velcroed’ to his TA than should have strictly been the
case. But he was happy, he did make progress and came out the other end three
years later.
Much praise here has to go to the
fabulous bunch of kids that he’s with. They have been together now since
Reception, and have known George from the very beginning. Obviously as Year
Threes they are now very aware of the differences; but not once have I ever
heard a derogatory word, cruel comment or seen them be anything other than
fully embracing of him and what he brings to the table. He still has his harem
of adoring girls wherever he goes, and one young lady in particular who looks
out for him in the most affectionate but non-patronising way. She comes out of
school with him, making sure he spots whoever is picking up and gets to them
safely before skipping off to find her own mum. They have at least one kiss
every day.
It’s quite a different experience so
far at the junior school. Willing to work with where he is, rather than trying
to force him into somewhere that he’s not comfortable. He’s got the Year Six
girls wrapped round his little finger. Working with a different TA but still
full time support (who he still likes to kiss and cuddle at the end of every
day), but now a far more independent and more mature young man – “I can do it
myself” being the current phrase of choice.
Even silly things like they’ve
managed to get him away from insisting on a toilet seat to sit down and have a
wee, and now doing it standing up. Little things and all that. I hear how well
behaved he is – and how incredibly polite – and then in his home-school book it
says how he was told off for spitting at his friends. Damn. Although I didn’t
really know whether to be secretly pleased about the spitting, as I had been
trying to teach him to spit out after brushing his teeth – was this not solid
proof that we had achieved that?! Hmmmm…
So school is currently going well.
Starting to have preliminary thoughts about what to do when we get to Secondary,
but I’ll cross that bridge when someone drags me across it kicking and
screaming, dragging my nude heels behind me.
So what of everything else?
Again,
those who read the original will know that at that time I’d just given birth to
a second baby, this one having only the regular number of chromosomes. Fast
forward to now and I have an ever so slightly quirky three and a half year old,
obsessed with dinosaurs and who can spin you a tale as long as your arm. I
still find it bizarre that all these words can come out of the mouth of someone
so little. Although he’s not actually that little at all, having just gone into
age four to five clothes and with legs up to his armpits.
Toby adores his big brother
and the feeling is very much reciprocated. In fact, the recent improvements in
George’s speech have, I believe, been largely down to the quite frankly
ludicrous conversations that they often have. They rough and tumble, and I take
heart from the fact that George knows exactly how to wind his little brother up
– just like big brothers should.
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| A narrow escape for Toby's dinosaurs |
Toby is also towing the family line of not
being particularly fussed about coming out of nappies, recently quite happily
just announcing he’d weed on the floor when I dared to attempt a day in pants.
He moved his dinosaurs out of the way first, though…
But much else has also changed.
In
the last couple of years we have moved house twice and I bought my own place
for myself and the boys last summer. Ironically, it is my dream house and what
I always wanted as the home for my family. Just the ‘family’ looks a bit
different to that which I envisaged in the picture in my head. Thanks to good
old Slimming World, I shifted almost three stone and then landed my dream job
working as a special needs co-ordinator in a large primary school. I absolutely
love my job. LOVE IT, LOVE IT, LOVE IT. Most of the time. But it has made me
more stressed than classroom teaching ever did. I work with some truly amazing
people that keep me (relatively) sane. And it has given me an insight into how this
whole school experience is going for George – and where we might head next. I
have also just started my Masters degree – beginning with the national award
for special needs co-ordination, and then… well, who knows????
I am sat writing this and happened
to glance over at the sideboard where my Mother’s Day cards are propped up,
waiting to be opened in the morning. I still sometimes find it ridiculous that
I am a Mum at all. A mum is someone like my Mum. A more ‘adultier’ adult if
that make sense. I have never needed my Mum or Dad more than in the last couple
of years, and they have quite literally been life savers on more than one
occasion. I couldn’t have done any of this without them, and I will be
eternally grateful. They’ve let me make my own (quite often massive) cock ups,
and caught me when I’ve fallen. My mum still comes to my house and cooks our
tea most Saturdays. The boys have such a close bond with their Nanna and
Grandad, which is something that I always wanted for them and I know it is something
that they will cherish forever.
I’m going to look forward to
re-reading this in a few years’ time, when it pops up on my news feed –
although with technology going the way it is, it will probably jump right out
of the screen and smack you round the face by then.
Who knows where we will all
be? Having launched myself back into the world of 21st century
dating, I have become something of a cynic romance wise – to quote the lovely
Julia Roberts in Pretty Woman, ‘I want the fairy-tale’. After dabbling in the
murky world of online dating (there’s another whole blog post in itself…) I am
now *FAIRLY* certain that the fairy-tale does not exist. There’s always a
compromise, if you think it’s worth making. I dream of getting married again,
and I dream of the perfect man (whenever you’re ready, Mr Beckham…) – but if
he’s not out there, then one who will love me just for being me, show me
respect and take me and my boys just as we are will more than suffice.
Then we
can carry on this life that has become just a little bit more than ordinary.
Sarah x
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