September 13, 2009
Sandy Lewis in the Sunday Times
In a shameless plug for family success, we would urge you to read Sandy and
Max Lewis in the Sunday Times today. We've written about Sandy and Max
before when we featured Sandy's book Living With Max, which is a heartfelt
account of the highs and lows of bringing up a child with Downs Syndrome.
Sandy is Amanda's sister. The book goes from strength to strength and Sandy
and Max have done a summer full of daytime TV appearences, book signings and
other media stuff.
Somehow getting in The Sunday Times seems the very best thing and we are
immensely proud of them both. We have been reading Relative Values in the ST
all our lives, so to see your sister and nephew featured is beyond exciting
and a little awe inspiring. It's been a hard struggle for Sandy, her husband
Paul, Max and his brother Charlie, but they have all done so much to raise
the issues of Downs Syndrome and the need to change attitudes towards all
disabilities. Go sis!
Sandy and Max in the Sunday Times
http://women.timesonline.co.uk/tol/life ... 829601.ece
SANDY: I had no idea I was having a child with DS [Down's syndrome]. I was
29 when I had Max, and I never had a test for abnormalities. But I knew
something was not right. He didn't move in the womb - or maybe just once a
day, so I knew he was still alive. But I never told a soul, not even my
husband, Paul. To verbalise such a fear would have made it real.
Max came with all the hope and wonder you expect with your first child. I
feel I was robbed of that by society's perception of DS. It started at the
hospital. Some of the nurses couldn't look me in the eye, as if they felt
unspeakable pity for me. Someone even said: "Why don't you put him in a
home, then you can try for a baby you want?" That didn't even come into my
mind. He was my baby! From the moment I saw him
I had that lioness pride and bond. Max was born with a hole in the heart,
and talipes - club foot. We didn't want them to operate, as anaesthetic
poses a further risk, so I did manipulations of his feet to correct them.
Paul's a very hands-on dad, but I felt a lot was down to me, so I gave up my
job as an insolvency administrator to care full time for Max.
We didn't have any advice. All I met was other mothers with perfect babies,
which was so painful. They were bleak, frightening times, and 18 months
after I had Max I fell into a paralysing depression. I was given
antidepressants but I'm terrified of medication, so I stopped them and
started running, which helped.
I wasn't in denial, but when your child is late in sitting, talking,
walking, standing, you can think: "If I buy that, or send him to mainstream
school, it'll be okay." So off he went to Brookland, a mainstream school.
The other boys were lovely to him, but they were streets ahead. And as he
got older, the gap grew wider and he got more depressed. We moved him to a
special-needs primary, Northway, and the change was dramatic. He was so much
happier.
Max has a powerful personality. Charlie, his younger brother by three years,
had a hard time. He's very reserved, maybe because Max is so forward. Max
loves people and parties and being the centre of attention. He is a natural
performer. When he was seven someone suggested we put him down for
Chickenshed, the north London theatre company. We went along, and it was
perfect for him. He's had lots of roles, from a punk fairy to a mouse. It's
a fabulous company, and it welcomes everybody.
Max had no problem learning lines: we simply read them out to him. His
short-term memory is bad, but his long-term one is astonishing. Many of his
favourite memories revolve around food. We thought he was reading
beautifully; in fact he'd learnt the Biff and Chip storybooks by heart. We
saw he needed extra tuition, and he's had a tutor, Julia, for some years.
Our life was pedestrian, a daily grind of caring for our sons. So when Max
auditioned for a part in the film Notes on a Scandal in 2005, and got it, it
seemed some magic had come our way. Cate Blanchett and Judi Dench were
lovely to him, and he really hit it off with Bill Nighy [Max played his son,
Ben]. He wobbled a bit during filming, which can be boring. And he doesn't
like change, so when the director, Richard Eyre, said, "Let's change this
line," Max got cross and said no. They let it stay as it was. At the
premiere none of the big stars could be there, which was a shame for the
film but fantastic for Max, who got lots of the attention.
With acting, Max has chosen a profession that's tough for anybody, so it's a
good job he'll have a go at anything. He films himself a lot, talking and
dancing, in his bedroom.
When it comes to sex, he's as interested as any 16-year-old, and he's had no
trouble getting a girlfriend. He has two, Hannah and Inessa. Hannah and his
ex, Sarah, both have DS. But Inessa doesn't. He does a lot of snogging! It's
good he's had girlfriends. We can have conversations like "If she doesn't
want you to put your hand on her, you have to respect that," and it's not
all theory.
Max has been our entire world, though recently we've been able to leave him
on his own for an hour, and that's a big step for us. He's fine at dressing
himself - if he looks ridiculous, I tell him, but most times he'll decide,
"I'm going to change." It will take him 10 minutes to assimilate that, as
his thinking is slow. Other things, especially visual ones, he's fast to
process.
If he's interested it's remarkable how able he is - he can reel off every
West End musical - but otherwise he couldn't care less.
Having Max has bonded Paul and me. But we've lost quite a few friends,
through our choice - they just didn't get Max. He's taught us the right way
to live, but being with him 24/7 is a challenge. We could all be accused of
pampering him. Until recently he had a doorbell by his bed that he'd push,
and then Paul, not me, would go and give him a goodnight kiss. Max rules the
roost.
In two years he'll go to a special-needs college in Wales. It offers
performing arts, computing, cooking, caring for animals. It's going to be
his High School Musical experience. These days, with better nutrition and
medical help, people with DS can thrive, and Max could have a long life. Our
worry is what will happen to him when we're not around. He can't live on his
own; he loves people. There's a community in Israel where they breed dogs
and make toys, and I'd like to bring that model here for people with DS.
I hope I outlive Max. Or I hope we go within five minutes of each other. But
if we've set up a community where he can be self-sufficient, he could have a
very good life.
MAX: I remember Brookland, my first school. I wasn't well, and Mum took me
to the homeopath. She helped me get better. I've got a hole in the heart. I
get it checked all the time.
At school they let me do what I wanted. I had a helper, Jackie, and Mum used
to come in. We had shows, Cinderella and Wind in the Willows, and I had to
work for it. I've been bullied at school. Kojo slapped me. Jacob pushed me
down and I cracked my tooth. My dad picked me up and I went to hospital. I
wasn't friends any more with him. Sean called me fat. He stole my money but
we're friends again. I remember Eastholm, the house we lived in, and my
birthday parties. I had an entertainer, big cakes, a green iced boat. I
loved that cake, I had green all over my face. Mum got me a Scooby-Doo cake.
It was chocolate, but my favourite is madeira. I love burgers. And chips.
And pizzas. And on Charlie's birthday, I had a bouncy castle in the garden.
I had too much chocolate, then I had a tummy ache.My birthday is March the
9th.
Afterwards we got two cats. Chutney was my cat, Pitch was Charlie's. One of
the cats pulled my mum's shoes down. They were so cheeky. I loved them. I'm
fond of animals but I get scared of barking. I would like a dalmatian and a
labrador. One day I went to see a show, All about Dogs - fantastic! Britain's
Got Talent had a dog in it - he did a tap dance.
One of my favourite shows is X Factor, and my favourite sport is wrestling.
I love musicals. I went to see Grease. Fantastic! And we went to see
Priscilla Queen of the Desert - on the first night, in the first row.
I met Jason Donovan and Ray Quinn. They know me from Notes on a Scandal, the
film I was in. That story - a bit nasty. I liked the line where I say "Up
your bottom". On the table, my favourite supper: cheesy pasta. I was 13
then. I had a trailer, a toilet, a table, some food. And a cake. And a DVD
player. I had a letter: "Welcome to this company." And I had an assistant,
my mum.
I had to go to the house when everybody was in bed. I love that bit of the
film. Cate Blanchett - I loved her. I would swap her with my mum. I would
swap my grandma with Judi Dench. She was nice. I was in the car with Bill
Nighy. I loved him. I had a hug from him. My cousins came to the film
[premiere]. We had burger and liverwurst. And afterwards Richard Eyre said:
"Here come the cast - Max Lewis!" I ran on, and people asked me for my
autograph right at the end of the film.
My mum, she's cute, a bit like a doll. She tells me off, always. I like
girls who look like my mum, with long blonde hair. Mum's not as attractive
as Hannah, my girlfriend. I've known her since I was seven. She has Down's.
She came for tea on Sunday. Then we watched Mamma Mia! I have another
girlfriend, Inessa, who's at school with me. Annalee loved me a long time
ago. Then she dumped me.
I don't want to talk about it.
Mum is not one of my best friends. Dad is. When Mum's away, I miss the fun.
And her cooking. And the music. Mum arranges youth club for me. She tells
good jokes. And she gives me croissants and macaroni cheese. I love it that
Mum wrote a book about me. I like going on TV with her. On This Morning, I
was introduced to Phillip Schofield.
Clowns I do not like. On TV they are fine. In real life, in a circus, I'm
scared of them. One of my favourite comedies is ChuckleVision. My favourite
TV programme is Total Wipeout. And Gladiators. And Crystal Maze. I like Mr
Bean, Doctor Who and Torchwood. And Fawlty Towers. I go to Chickenshed all
the time.
I was a pirate. And in The Night before Christmas, I was Jacob. I'm in
Pinocchio this Christmas. When I grow up I'd like to do more acting, or be a
serious singer, like Will Young or Gareth Gates. Or in a boy band. My
singing is okay. Terrible dancer. I'd like to be a director in films and
theatre. I'd like to be in a musical. A part in Billy Elliot. That's my
dream. I like being on stage. I get a bit nervous before. On stage, I just
relax s
Living with Max, by Sandy Lewis, is published by Vermilion at £12.99
Health, Hope, Joy & Healing :
May you Prosper, even as your Soul Prospers 3John 2
Jennifer Ruby
Email advice is not a substitute for medical treatment.
http://www.rubysemporium.com
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