In my defence I don’t come from a generation
that has grown up with technology and social media I come from the era that if
you wanted to see a friend you went and knocked on their door and asked if they
were coming out to play or as you got older to chat about when and where you
were meeting to go to the disco, yes I am that old, and I find that I still
prefer engaging with people face to face. Come and have tea with me in the
garden or come indoors and have a frothy coffee or hot chocolate on colder days, there'll probably be cake as well as I love to bake, and I’ll chat with you for ages.
Don’t get me wrong though I’m not saying that I’m pants at blogging
because I can’t use the technology or don’t enjoy using social media and
connecting with people I would otherwise be unable too I’m pants at it because I
have really good intentions that I don’t carry through. I have a list of things to write about as
long as your arm but do I actually get around to organising myself and writing
and posting any of it on any sort of regular basis, apart from the odd bit on
Instagram and Facebook, the answer is a very clear NO I DON'T! I start to
write stuff, I have notebooks full of notes, masses of photos and plenty of
part started draft blogs that I've started fully intending to complete but then
I either lose my train of thought or get distracted by something. I
really do admire people that can discipline themselves and keep focused on
a task, my creative brain just seems to have a habit of trying to go onto the
next project, or try to work on several at once, before the current one is
finished, this really can be most frustrating at times as I often tend to
have quite a few partially completed projects on the go. I know that
somewhere I have an almost but not quite finished hand sewn patchwork quilt
that I started when my youngest daughter was about twelve, she's now forty-two
as I said I can get distracted quite easily and things don't always get
completed.
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| Sammy when she was about 3-4yrs old |
When I first started writing about life with Sammy it was my intention
to have some sort of pattern to the things I wrote starting with her early
life and then sharing the things we'd experienced as she grew up before writing
about where we're at and how life is now as we both grow older, which is yet
another new experience. Like so many things in life though it hasn't gone
quite to plan and I tend to write and post random blogs every now and then
which is certainly not a great way to gain myself a large following if
that's what I was really interested in. All I really hope for from
my random blogging though is that somehow something I write may help someone else
somewhere on their journey. Having companions on a journey even if just for a while can often help to
make it so much more fun and a bit less lonely. I have a lot to experiences to share as Sammy will be forty-eight in a
couple of weeks and being born at a time when the life expectancy for people
with Down's syndrome was low and the expectations of her being able to achieve
anything were also low it’s safe to say that during those forty-eight
years we've encountered quite a bit. There's been highs there’s been lows
we’ve been stuck on plateaus and we’ve had our scary times too. One of the scariest was when Sammy’s
personality quite suddenly changed and she went into an Unexplained Early
Regression, but that and the story of her journey back is a subject that deserves a post all of its own and one I
will write one day. There are also the
times when it's felt as if we have been steering our way through uncharted
territory full of mud without any sort of light to guide us the times when it
felt as if God was holding onto the tips of my ears to stop me going
under. I’m glad to say though that those times
pass and it certainly hasn't all been mud and darkness in fact far from
it. Life with Sammy has been and still is an
adventure with lots of different twists and turns that have taken us to some
unexpected places as she continually reminds me and others that people who have
Down's syndrome should never be underestimated and assumptions should never be
made about what anyone may be able to achieve.
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| A member of the local Girl Guides |
People with Down’s syndrome have now become so much more visible than
they were when Sammy was growing up and there is hopefully no longer the same
segregation and very low expectations that were there when she was young as the myths,
fears and barriers are being broken down. I love seeing the success people with Down’s syndrome are now having as
actors, dancers, models, TV presenters, campaigners and business owners as well
as in other areas. It is so important to
be able to see yourself positively represented within society and to be able to
have dreams and aspirations, historically something that has been denied to
people with Down’s syndrome. Sammy is not someone who is ever going to hit the
headlines, but you know that’s okay she is perfectly her and exactly who she’s meant
to be. She has had a part time paid job
in Pizza Hut, until the one she worked in closed, and before the unexplained
regression she’d mastered independent bus travel on a route that required changing
buses, she lost a lot of skills with the regression but I don’t and never have measured
who she is by what she does or doesn’t achieve as she is just perfectly her in
all she does. I can remember a time when
she was a child and marched everywhere because she wanted to be a Grenadier
Guard, something she was never likely to achieve but her dreams were never
squashed. It’s probably not a bad thing
that she moved on from that aspiration though and on to other things as even now she
would be likely to disappear underneath the bearskin (hat).
Sadly though society still so often tends to try to make us believe that
to be a success you have to be able to do certain things, behave in a certain
way or achieve certain qualifications.
This just isn’t true! all of us fly at different heights some will soar
like eagles while others like emu’s or ostriches will remain on the ground. The thought of a flying ostrich is interesting
but maybe I won’t go down that train of thought right now as an ostrich isn’t
meant to fly high any more than an eagle is meant to be able to run at great
speed across open land but each is very successful at what it does. It’s the same with people too we’re not all
meant to be able to do the same thing in the same way as everybody has a
uniqueness that needs to allowed to shine through. What is important though is that the
opportunities, understanding and support are there for people to be able to follow
their dreams, work towards their goals and aspirations and be allowed to be perfectly
themselves within an inclusive and caring society that doesn’t try to set
limitations on them or make them feel less worthy because of a condition they
have.
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| Sammy working Pizza Hut |
*All opinions are the authors own.
