I will try not to brag but....
(we are really very proud and need to celebrate.)
Natty came rushing home clutching 2 precious sheets of paper yesterday.
On one she had written the entire alphabet, independently, for the very first time:
On the other she had written random numbers up to 15 on the whiteboard as the teacher had asked her to:
Now every child develops at their own pace and has strengths and weaknesses in different areas. Natty just happens to love writing, tracing and copying, so we harnessed this. That said, this process has taken all school year to master, using Jolly Phonics actions to start with, then Ruth Miskin picture flash cards to visualise each letter with a writing action and lots of sensory activities, drawing in the air and on backs too.
Read our Tips for Writing here for more information on seating, pencils and activities to try.
Kristian is the close friend of a friend, a hardworking single Dad, a gaming expert, a cheeky comedian and the nephew of a man who has Down's Syndrome.
Please read his heartfelt words about his Uncle Martin who is nearly 50, and how times have changed for those with the condition. But have we got our priorities wrong?
Uncle Martin
My Uncle Martin is
approaching his 50th Birthday. He was my grandparents second child,
following a gap of almost 10 years after his sister (my mother). They had
already started their family later than many at the time following my
Grandfather’s enlistment in the Army during WWII. There were no controversial
screening programmes back then so they didn’t know he had Downs Syndrome until
he was born.
I don’t know exactly when
it was that I became aware that my Uncle had Downs. As a child yes labels do exist, but until
you understand them they aren’t how you define something or someone. To me he
was always just Uncle Martin. The one who would sit with me for hours watching
The Dukes Of Hazzard and Knight Rider, amongst others, and get the same excitement
from them as I did. Always picking me up for hugs joining in with whatever game
I’d decided to play.
He has not achieved what many would consider great
things in his life. He has no qualifications. Has never been the face of a
brand or broken down barriers. Has never had a job and he has never lived
independently. Aspirations I’m sure many of you reading this will have for your
child. Sadly they won’t all achieve them. But does this mean their life will be
unfulfilling? That they will not be happy and content? Ask Martin.
He was born in the mid
60’s. A very different time for people with disabilities. Most of his education
came from my grandparents at home. He attended little if any mainstream school.
Certainly nothing beyond Primary level. His interaction with other children
beyond the neighbours was done at groups and centres where all the other
children were similarly disabled or were siblings of children with a disability.
Into adulthood he attended day centres which were not just about respite for
my grandparents. Working alongside other people with disabilities he would
normally attend Monday thru Friday, transported to and from the building by
mini-bus. From what I understand it was almost like a normal work environment. They
would produce jigsaws and similar products that were sold to help raise funds
for other activities. Sadly over the
years, government funding for things like this has all but evaporated. He still
attends a much more limited version to this day, although it is now only two part
days per week.
In late 1988 my
Grandfather, who had been providing sole care for Martin since the death of my
Grandmother only a couple of years earlier, died suddenly. For a while his
older brother who lived close by took Martin in. However as a man of nearly 70
in deteriorating health himself, this could never be a long term solution. My
mum was in no position to take him into our home as a single parent with two
children under ten. Much as I could see, even then, that the alternatives were
limited and not very appealing to her as his sister.
Thankfully, through a
friend’s recommendation, she found a place at a very, very special residential
home. It was family run and catered for people with a variety of mental
disabilities. He would have his own room and be encouraged to live as
independently as he wanted to. Residents were offered the opportunity to take
part in the preparation of all of the meals that would be eaten together. In
the grounds of the house the owners kept chickens and grew vegetables, which
again were activities that everyone could be involved in.
He has lived there now for
24 years, many friends have come, and sadly gone in that time. It very much
feels like a family when you visit as familiar faces greet you and ask how you
are. He has been very lucky to find such a warm, family orientated environment.
Whenever I see him he always has something to tell me about what he’s been
doing or what he’s looking forward to doing. He takes great pride in taking
part in community events where the home opens it’s doors to the public to sell
excess fruit and veg grown in the ever expanding corner of the garden dedicated
to that activity.
Even now his sight is weakening and his legs give him all
sorts of discomfort there is always a smile on his face and a practical joke to
be played. He doesn’t like it that I’m now the one who picks him up for hugs
though...
I’m sure that many of you
who read this will be horrified by the thought of your child ending up in a
residential home. That there is no way that is something you could/would ever
contemplate. My grandparents would certainly have been too. But for me, the years
he has lived there have been the happiest and most inclusive of his life. He
operates more independently now that I ever believe he would have had he
continued to live with family. He comes out every Saturday and spends the day
with my mum and now my son, who my mum provides childcare for while I work. I’m
proud to say that he, like me, doesn’t see the label. He knows Martin as the
one who watches Doctor Who and Transformers with the same excitement as he
does. I supposed in that sense Martin has achieved barrier breaking. My son
will be more understanding of disabilities as a result of their time together.
So, back to my point. The
reality is that despite all the wonderful, positive changes today in how
it is handled, not every child born with Downs will achieve everything their
parents aspire for them. Certainly I feel that including people born with the
condition in mainstream education with support and encouraging them to play
whatever part in society they want to is the right thing to do. Who knows what
a difference having that opportunity would have made to Martin’s life. But do I
think that not having those chances has made his life any less fulfilling and, for want of a better word, ‘happy’? No I do not.
And for me, that last part
is the most important. Surely that is everyone’s dream? To be happy. Not just those that are
not as able as the majority.
When I imagine the worst possible sub-species of opinionated troll, I simply have to cast my mind's eye back 20 years to my ex Mother in Law.
She was the personification of everything I am not. A domineering parent. A woman who always felt compelled to unthinkingly voice the strongest of opinions on every subject imaginable, with little forethought, background knowledge or consideration for others. One who played her family like puppets.
As a young 20 something I listened to the homophobic, racist drivel, cringed inside and distanced myself from her and ultimately the son she had irrevocably damaged. Today, I would have countered her bigotry with something a little more challenging.
And so, it was with this type of minority reader in mind that we set up an interview in the Mail on Sunday for an article designed to question the increasingly accurate and routine use of screening for Down's Syndrome in unborn babies. They were in fact the only newspaper to run a story that didn't simply hail the arrival of the new test as a miracle. (For more background information on this subject read DS Screening: A Few Cautionary Thoughts.) It is a controversial subject, so we were prepared.
But we trust the freelance journalist Alison who we've worked with on Natty's modeling stories. We understood she would present both sides of thinking about the test. I think the main aim was to make parents realise that the test is not compulsory and will only bring anxiety with it. That termination is not the only option, that life with a child with DS is a real and wonderful path to take.
I think the article did achieve this. The headline was questioning, inviting a rethink, Natty's beaming face shining out from the page. The enduring image of the piece.
Of course you can nit pick over semantics, and we parents might have written the article differently, but it was the Trojan horse inside which we got our concerns into the heads of the more unquestioning Readers.
And if just one of them steps back and has a rethink, then we have reached our goal. I believe in choice and want support for all women whatever their decisions, but we need to stop and think about what and why we are testing.
Many comments that accompanied the online article, which you can read here were unpleasant, friends have told me. We didn't look. We didn't read. The trolls were out in force. But then we knew they would be.
So to the ex MIL I thank you for teaching me how to ignore the opinions of those who don't warrant my attention. A valuable lesson in life indeed.
And a final thought. In all matters such as this, we must remember the wise words of Daddy Downs Side Up:
"Everyone is entitled to his or her opinion.
However opinions are like, well, ummm, bottom holes.
I haven't actually had the pleasure of meeting Sarah Gordy in real life yet, but she has had a huge influence on me and is a great inspiration not only to our family, but to thousands of others.
Sarah is a beautiful, talented, humorous actor, (you may have seen her in Upstairs Downstairs or Holby City), a charity ambassador, a public speaker and a campaigner.
Sarah also has Down's Syndrome, but is is not all she is and she does not let it define her.
Sarah recently agreed to let Family Downs Side Up interview her. Mia (M), Natty(N) and I(H) wrote some questions for her:
Sarah, when did you first discover a talent
for drama? (H)
At school my teachers said I made the other
children feel confident on stage so I always got big parts. Kaleidoscope Theatre were traveling around
the country auditioning people, a friend was going and I went along for the
ride. I joined the Company. Later Granada TV were searching for somebody
to do three weeks filming for Peak Practice.
Carousel Theatre said they didn’t have anybody who could do it but they
knew somebody who could. That was my
first professional job.
Snooty Fox Images: Sarah Gordy
Where did you do your training? (M)
My mum’s kitchen table really! Mum, Catherine (my sister) and me. Mum would
ask ‘what ifs’ and we would have to imagine. When we had a story we had to
think how the people felt that sometimes made us change the story. We learned nursery stories to train the
Little Grey Cells. I also did a course in drama at Sussex Downs College but I
learned the most at home.
What’s it really like when you see yourself
on TV? (M)
It is not really me, it is the character
and it is nice to feel the character again.
If it is an interview then I am watching myself, weird but
interesting. I was so disappointed because I didn’t get
copies of Live with Gabby or This Morning. I would like to have seen them. I have seen
other interviews though.
Can you tell us anything about your current
project? Or is it top secret ? (H)
‘The Colour of Light' is being filmed in
August. The main role is played by
Shobna Gulati (“Anita” in Dinner Ladies, Dev’s wife “Sunita” in Coronation
Street) I play “Gracie” I went to Wales last week to shoot a teaser scene and
some still photos. Funding is there for
the film but we need some more we want to make it brilliant. Will tell you about crowd funding later. “Gracie” is a beautiful role, she makes
people feel good.
What is a typical day in the life of Sarah
Gordy? (H)
Great question, you know what happens if
you are filming or doing a play so I will tell you another day. I will exercise to one of three tapes. I will look at Twitter if I have time. I am Director/Trustee of The Oyster Project
which is run by disabled people for disabled people of all types. I help run
Oyster Drama Group and we do films and plays. Lately we are also doing dance
with James Dunbar of Chicken Shed Theatre.
This takes a lot of my time. Sometimes I help out at British Heart
Foundation shop when I have time. I have
to do my share of the housework too.
I know you and your sister are very close
too. How would she describe you in 3 words? (M)
Energetic
Passionate Happy
What’s your favourite cake? (N)
A BIG one. Chocolate. I love most cakes!
Have you got a pet? I have a Chihuahua. (N)
No.
When we were little we wanted one but mum has asthma. Dad said we had to choose. Keep mum or get a
dog. He joked that mum could cook and a
dog cant.
You are an enormous inspiration and a role
model for young people with Down’s Syndrome and their families across the
country. How does that make you feel? (H)
Great.
I want people to be happy and not limit themselves. I feel wonderful if I make people feel
encouraged.
I
talked to a Junior school assembly on Thursday (made the kids laugh and adults
cry) about how we dream about what we will do when we grow up. I said your dreams more likely to come true
if you are fit and healthy and I told them about skipping songs their great
great grandparents would have had. I had
toured a play called “Walking On Water” with Theatre Centre to schools which
had a lot of skipping. I get asked to do
a lot of talks but I need to earn a living.
Wish somebody would make a film it would tick so many boxes.
What issues would you like discussed/raised
by families and support groups working with individuals with Down’s Syndrome?
(H)
Mum and I have been talking about
habits.
People with Downs Syndrome stick
to their habits. My friend is a good worker at Waitrose. He will always do
things the way he was taught you can trust him. Another friend got really upset
when she came with us to the cinema. We
take a yogurt or a sandwich a bottle of water or juice. Her cinema habit is loads of chocolate &
popcorn and cokecola. She thought my mum
was cruel. I love her but she has
diabetis and can hardly walk. Habit
learned is for life.
What is Your Dream Sarah? (Sarah's bonus question)
To get a role on TV as a real woman not a
‘Downs Syndrome’. In the old days a black
man was just black he could hold a tray, dance etc. I have played complicated characters on stage
and the critics liked it, but TV is conservative.
You can watch one of Sarah's inspiring talks for TedX here.
Thank you Sarah. I look forward to meeting you one day soon. H x
There were MAD bloggers galore new faces and some seen before. it was a chance to meet before the big night and thank our families for their support.
Hayley, Natty and Mia from Downs Side Up
That surreal gulf between knowing an avatar
and spotting someone in reality.
I missed many, for which I kick myself.
I promise to learn names, blogs and Twitter handles.
I will!
New friendships were forged. puppy love blossomed. children were nervously chased
as conversations remained half finished.
Natty's day out; eating doughnuts
Too much sugar was consumed adrenaline made us squeal. boundaries were pushed new experiences devoured.
We jumped queues with our gold status
collected badges along the way
our lanyards the souvenir
of a fabulous day..
Reluctance to end each ride drops of rain, plastic ponchos tears at the 4D film we negotiated our lows
Allowing safe risk, letting go takes practice for me. feelin sick with each twist and turn we watched Natty and sis devour the day with gusto.
Up, up and away
"By myself!"
Soon climbing wasn't enough
Natty wanted the exciting stuff!
My phobia of rollerscoasters
had to be concealed.
(As you can see I hid it perfectly!)
Fun at Legoland
So we ended on a high!
The kids got me on a roller coaster
all the while protesting that I have been pushed screaming bravely jumped out of an aeroplane for charity once and that I have nothing to prove!
Home we came,
Natty snored all the way
and woke this morning chattering
"Mummy scream, Mia scream, Natty scream, Daddy scream."
