Book - My Brother Mark

I wrote My Brother Mark Has Down Syndrome in 1990 as if our elder son Paul is the writer, although it is actually my own words written in a style that a child might write. I asked Paul before writing the book what he might say about Mark but he was unable to express any ideas, although after reading it he really liked what I had written.

By writing this book I am trying to express some of this thoughts and fears and frustrations. To tell him it’s ok to be angry sometimes, while still loving Mark. To point out to him the good things about having Mark as a brother, and what a special person Paul is too.  

I am looking for a publisher for my book which I hope will help teach other children about Down Syndrome, and to tell other brothers and sisters that they are not alone in having to cope with a disabled brother or sister.

The first draft of this book won first prize for the Outstanding Children's Book presented by a student in the Teacher Assistant Certificate Class of 1990 in Bunbury, Western Australia. 

My Brother Mark Has Down Syndrome

By Jill Harrison – for my sons Paul and Mark – 1990

April 1987, Paul 8, Mark 5 1/2 years

Hi! My name is Paul and I live in Bunbury in Western Australia. I am eleven years old and I am interested in dinosaurs and building things with Lego.  I play soccer on Saturdays and go to Scouts. 

I have one brother, Mark, who is eight years old. Mark has Down Syndrome.

I was only two when Mark was born. I didn’t know it at the time, but Mum and Dad were very sad for a long time after Mark was born. They didn’t know if he would learn to walk, or talk, or feed himself, or write his name, or read a book, or ride a bike, or play football, or learn to swim, or anything.

Mark has learnt to do all these things, but he still has trainer wheels on his bike.

I just knew I had a baby brother and I thought he was great.

Perhaps I should tell you what Down Syndrome is.  It isn’t a disease. You can’t catch it from anyone. It happens when the baby is being made inside the Mother. Something doesn’t go right. The Mother doesn’t know it’s gone wrong and she doesn’t mean it to happen. It just does.  No-one can do anything about it to make it better.

So the baby is born and the Doctor can see by looking at the baby that something is wrong. He takes a bit of blood from the baby, and tests it, and the test tells him the bay has Down Syndrome. Then he has to tell the parents. That’s when the sad part starts, because the Mum and Dad were hoping for a perfect baby.

Down Syndrome is called an intellectual handicap. That means it is very hard for them to learn, and they need lots of help, but they do learn in the end. Maybe not as good as you and I might, but they can learn and do lots of things that we can. Mum and Dad had to teach Mark just about everything he knew before he was old enough to go to school.

Mum tells me I can help Mark to learn too. Mark thinks I’m great and he copies everything I do. That can be a real pain sometimes but it helps Mark to learn and I can teach him things. So that’s OK.

Like the time I taught Mark to ride his three wheeler bike. Mum had been trying for ages to teach Mark to ride his bike. But he wasn’t getting anywhere. So one day I took him outside to try and help him. And hey presto, what do you know! He suddenly leant! Mum was so thrilled and so proud and pleased with me for teaching Mark to ride his bike. I was really pleased to see Mum happy.

There are lots of things Mark can do.

Mark goes to school at South Bunbury Primary School.  He is in Grade Three. I go to school at Eaton Primary School and I am in Grade Six.  My school is near out home so I ride there on my bike. Mark’s school is in town and a bus picks him up from our home to take him there and bring him home again after school.

Mark goes to a different school to me because at South Bunbury they have three Educational Support classes for children like Mark who need extra help to learn. There are only eight or ten children in each class, and sometimes the children go into the regular classes for things like music, art or sport, and they can play with the other children at lunch time.

When Mark started school I used to worry a lot about him. What was he doing? What were the other children in the class like? Did he have friends to play with at lunch time? Could he open his lunch box and get his sandwiches out? Could he turn on the tap to get a drink? Was the teacher nice?

It used to worry me a lot and I got very upset. So Mum and my teacher and Mark’s teacher arranged for me to go to Mark’s school for half a day so I could see what was happening and that he was alright.

I was Ok after that and didn’t have to worry any more because Mark was having a great time, he had lots of friends and he was learning lots of new things.

Mark really loves going to school.  At South Bunbury the children with learning problems can learn from the normal children, and the normal children can learn about being caring of other people.

The first year Mark was at school he got the class citizenship award for his class at the end of the year school concert night. His teacher said he was very special and brought out the best in everyone. We were so pleased and proud. The crowd cheered and Mum cried. I wonder why Mum’s cry when they’re happy.

Mark loves sport. He loves watching it on TV and playing it. Even though he’s not very good at it, he keeps going back and trying. One day he got a certificate after the school sport’s carnival for “Determination in Sport”.

In the winter Mark plays Freeball and in the summer he plays Kanga Cricket. He also goes to swimming lessons with regular children and is up to Stage Four, which is really good. He has always loved swimming. He swims under water with a huge smile on his face.

Mark also loves music and he’s really good at imitating things he sees on TV, especially the commercials. Mum says she thinks he’s going to be an actor when he grows up.

Mark makes lots of people happy. He is very friendly and talks to everyone. Nothing bothers him much for long. He always cheers up again. He notices when you’re sad and puts his arms around you.  He always seems to enjoy himself.

Of course he can be a real pain at times, can’t we all? Sometimes he is naughty and stubborn and does not do what Mum or Dad ask him to do. Sometimes he makes me angry and I get mad at him. But most of the time he’s happy and loves everyone. I love him too. 

Anyway, that’s about all I guess. Down Syndrome people are regular people like you and me. We just have to remember to be kind and considerate of them and not make fun of them. We should look at what they can do, not what they can’t do.

Mum and Dad still feel sad sometimes about Mark. Sometimes I get sad too. We don’t know what will happen to him in the future. Mum says he’ll probably get a regular job, look after himself, perhaps get married. Just like me. Most important, he’ll probably always be happy.

That sounds pretty good to me.

How can I tell you what love is?

                Love is bearing a precious little child.

How can I tell you what sorrow is?

                Sorrow is knowing this child will never be what we planned.

How can I tell you what pain is?

                Pain is a felling wrenched from the heart

A feeling that goes on and on.

How can I tell you what happiness is?

                Happiness is seeing this child grow every day

How can I tell you what joy is?

                Joy is watching every new step he takes.

How can I tell you what sunshine is?

                Sunshine is something this child spreads around him

every day of is life.

Sorrow ends

Pain slowly fades

But love and joy are ours forever

Reflected in the smile of our child.

Jill Harrison

10 October 1994

Update September 2010

Since I wrote this book Mark has made a number of achievements. He completed Year 12 at the Education Support Unit at Australind Senior High School, he was a member of the Eaton Scouts group, played football as a member of the Australind Junior Football Association, works at Activ Timber Products (sheltered workshop) for 2 days a week and open employment at Aristos Waterfront Restaurant in Bunbury for 2 days, ran in the 2000 Sydney Olympics Torch Relay through Brunswick in Western Australia, won a Children of Courage Award in 1996 presented at Government House in Perth, has competed equally as a member of the Forza Dragon Boat Club since 1997, works out at Zenith Gym 3 times a week, and was a groomsman at Paul’s wedding in 2004 and said the toast to the bridesmaids.

Mark is well accepted and much loved.  He teaches everyone around him about people with Down Syndrome. At Paul’s wedding, Paul made special mention of Mark in his speech, saying that Mark “inspires me with everything he does”.

Mark loves football and is an avid West Coast Eagles supporter. He is a keen movie watcher, enjoys doing “Word Sleuths”, takes photos with his digital camera, and his latest craze is his “Wii” machine.  Mark has travelled extensively with his family throughout Western Australia, and to Canberra, Sydney, Melbourne, Tasmania and to Uluru and Alice Springs. Mark has also travelled to South Africa, Singapore, Mauritius, Langkawi, Kuala Lumpur, Phuket and Bali.

Mark has brought our lives many special gifts.  And I know that Paul is the wonderful person he his partly because of his experience having Mark has a brother.

Jill Harrison, 13 September 2010

Down Syndrome is the most common form of intellectual handicap in the world, occurring approximately one in every eight hundred births. It is of genetical origin caused by faulty cell division of Chromosome 21 at conception. A child with Down Syndrome has 47 chromosomes instead of the usual 46 (23 pairs). The effects are both physical and mental, though the degree of handicap is varied as with abilities in the general population.

As more is learnt about the Syndrome, educational opportunities and acceptance within society is increasing and more people with Down Syndrome are realising their full potential and capabilities. As a result greater opportunities for people with Down Syndrome are opening up within the general community.


 Update March 2014

 "Now I See" book project. Edited by Angela Blakston. An anthology of stories by Australian and New Zealand parents for parents of children with Down Syndrome. My story about our son Mark "Inspiring Achievements" is on page 117. 

Now I See is a non-profit group. Book proceeds will be used to print more books to give free to new parents and health professionals.
To read inspiring stories about people with Down Syndrome and their families and to buy a copy of the book, please click here - Now I See Project