of this I had to stay 10 weeks in hospital to stop me going into
labour again. I was given a side ward, which helped but the days were
so long and boring,
1992, I gave birth to Katie, our lovely 11 year-old daughter. I wasn't
told about the fact that Katie had mds until the day before she was
born. Before Katie was born a lady called Margaret (specialist health
visitor to special needs children) from the hospital came to talk to
me about "Down Syndrome". I couldn't cope with all she was
telling me - it was my baby - the baby I wanted. I told her to leave
me alone. I felt as though I wasn't feeling anything. I cried for my
child as well as me. When she was born by caesarean, they rushed Katie
away. I had to see her. I did briefly and she looked like any baby crying
because she was hungry. She had tubes because they were going to operate
to remove the blockage. Katie had an operation to remove it the following
day. Without it, she would have certainly died and she now has a scar
the length of her tummy. Katie was in St Mary's Hospital, Manchester
where the doctors did a blood test which confirmed she had mds - 50%-downs
50% normal. "What's this ? Something else wrong ?", I thought.
What's mds !!!!! No one could really explain with so little heard of
it and it being so rare.
Katie was about 3 months old, Katie's dad and I parted (arguments) andI
was left to bring her up on my own. He didn't have any contact with
her at all after that. It wasn't easy not knowing much about mds. The
family were around but they didn't understand. I desperately needed
to talk to someone who child was the same as mine. Fortunately, I have
since re-married and Bill has adopted Katie. We searched the web to
find someone somewhere that could help us with our child and we found
Bree in 1999 who had set up a mosaic down syndrome site in the USA.
She had a daughter and we were thrilled to find other parents around
the world too. They understood how we felt. We didn't feel alone anymore
but we still felt the health and education professionals didn't really
understand how Katie would develop. She seems to do the same in some
things as our other children, only a little slower.
Katie's early years, the only help given was from the local Special
Needs Centre and from a Portage helper who came to the house once a
week to help Katie with motor skills.
Katie reached nursery age, we decided to let Katie go to private nursery
as well as state nursery. The private nursery gave Katie the chance
to show her how to communicate with other children as well as giving
her a start in early years education. Katie loved going and learnt a
lot about herself and others, and was treated the same as all the other
stayed there until a week before she started mainstream school, where
she has a one-to-one Special Support Assistant for 17 hours a week.
Katie's workload covers all the areas of the national curriculum and
she is currently on level 11 reading and is above average at reading.
Her downfall however is numeracy but does ok in Literacy. She just needs
help with some comprehension. Katie's doing well in school in Art (making
her own slippers at the moment) and likes music, science and geography.
She loves to sit at the computer and type, to anyone who will chat to
her. She has got lots of friends too at school.
is a happy child, very loving but can be very stubborn and defiant.
- She seems very clever and has an answer for everything ! She asks
questions all the time, and loves music (favourite bands are Sugababes,
Westlife, Michael Jackson, Robbie Williams and many more). She loves
fashion clothes and has all the up to date clothes - a right little
loves to go to MacDonalds and loves chinese food - a pleasure to take
out. She has lovely manners too. She likes ten-pin bowling and talking
toher mds friends on the webcam. We wouldn't change her at all despite
her being a horror at times :). She brings so much love to all who meet
her. Feel free to get in touch, I'd love to hear from you.I still feel
the way you do. You learn to live with it but remember - it's a child
first who just happens to have mds. It can be hard work at times but
which child isn't :)