Downs Syndrome - My Brother

My mother was not offered an abortion when she was carrying my brother. For one thing, it was illegal, for another, they didn't have ultrasound in 1968/69 and the tests available now had still to be devised.

When my brother was born, the doctor ordered the crib to be put in the room with my mother instead of going to the Nursery, as was usual in those days. He hoped that, after four other babies, she would notice something was a bit different about this one and so she wouldn't have too much of a shock when he gave her the news. The terms commonly used, in those days, was "mongol" or, "mongollian idiot". This was due to the epicanthpic fold of the upper eyelid which is similar to asiatic races.

Dad was with her when the time came, and the doctor pointed out the characteristics that identified my brother as being a baby with Down Syndrome. The question was asked as to whether or not they wanted to consider having him placed in an institution, but the answer didn't even have to be discussed. Both said "No". Institutionalising babies such as my brother, to hide them away, was considered normal in those times. Now they simply hide them by aborting them before birth.

When our parents told us the news, they were met with a blank stare. We didn't know what the fuss was about, he was our baby brother and,after almost 12 years, we were excited to have another baby in the house. By the way, I was 15 at the time, five months off 16.

Our baby brother was just awesome. Our younger brother lost his status as the only boy in the family and the youngest all in one go: as in "You are always picking on me because I am the youngest/only boy in the family". He was commonly called "Boy" by us girls. Now we had to use his name. BTW, that's me with the flower in my hair. Sixties, Flower Power, Woodstock, and a baby brother with Down Syndrome! I wasn't sure if I was blessed or cursed.

Despite that, my brother (No 1) used to push his baby brother all around the neighbourhood in his pram, when he was old enough to sit up, and, when I had baby-sitting duty, he was put in the back seat of Mum's VW Beetle and off I would go. No seat belts in those days either, just the basinette in the back seat. Just as well I was such a good driver, eh?.

He was our pride and joy and, as our house was the drop-in centre for our friends because our parents made everyone welcome, he had plenty of attention and stimulation in those early years. Being rather rough and ready, we never babied him or treated him as "different". I believe this helped his development immensely.

When he was born we lived in Whangarei but within three years had shifted to Auckland. Dad was a marine engineer, coming into port for three days every three and a half weeks. Mum worked in a commercial laundry and, at 18 I was living away from home and was dating my future husband who thought my little brother was sweet. Sweet?!

The kid was a brat! And this was when he was only three.

I remember my sister telling me about one Saturday morning when Mum had gone to work and she was having a lay-in. The brat came in and wanted her to get him breakfast. She re-assured him a couple of time that she would get it soon, but Ohhhhh noooooo. That was not good enough. He came back to her room, pulled back the bedding and scattered cornflakes on top of her, making it impossible for her to stay in bed.

Non-verbal communication was a strong point with him.

If he wanted a bottle of milk he would go to the cupboard, get the glass bottle, put it in the empty aluminuim jug that Mum used to heat it in hot water (no microwaves) and RATTLE it while we were watching TV. He had absolutely no sense of priorities for his teenage sisters, let me tell you.

Dad did not escape either. Once, when Dad was in port, he was watching something important on TV, probably the News, the brat wanted something and was told to "wait a minute". His older siblings would have recognised the fact that we would have to wait for an ad break. Not this kid. He went and got a little wooden hammer and hit Dad on his bad knee with it to get his attention.

You might think it was a lucky hit, but not me! I lived with that kid. Here we are a week before my wedding at age 19. Darcy was four. (I'm on the right).

Wandering Off
Down's kids tend to wander off at a whim. My mother may remember more, but three stand out in my memory. I think Down's kids have the mental awareness of a very young child and get easily distracted but, because they are bigger in size, people expect more mature behaviour from them and aren't as careful in monitoring them.

1. My parents had a house bordering a Golf Course. The Brat wandered off, found a ranch-slider that was open and sat down to watch cartoons. The home owner was simply flabbergasted and didn't quite know what to do with this strange kid that was totally outside of his experience.

2. And this is funny... He went for a walk down the road early one morning, not far, and found the local supermarket door unlocked. In he went - no alarms going off - and started shopping. I don't know how many carts he filled before the manager arrived that morning. The guy flipped! But hey! He should have been more concerned that the security firm he was paying to check his premises hadn't done their job. He could have been burgled big-time.

3. Back living in Whangarei, he fell in love with Sarah Brightman singing Music Videos on TV as Christine in The Phantom of the Opera. He wanted to marry her. I had to disillusion him and tell him she was already married and her husband wouldn't appreciate his attentions.

Our brother was driving from Onerahi into Whangarei that morning when he saw Darcy walking along the road in the opposite direction. He arrived home with him about the same time as Mum and Dad were beginning to panic.

As a young teenager, Darcy went to South Bend in America, participating in the International Special Olympics Games. Despite instructions to the media that participants should not be interviewed without a caregiver present, he was targeted and did the Haka on American TV, This was why he thought he knew how to get to America to propose to Sarah Brightman.

Sportsman of the Year Award
After the Special Olympics,and all the medals he returned with, my brother was to receive a Special Award at the Northland Sportsman of the Year event. My Dad had had another coronary so couldn't attend and, as Mum was looking after Dad, they asked my husband to take the second ticket and attend with my brother.

When he was called up on stage to receive the Award, he grabbed the microphone off the celebrity presenter, NZ cricketing legend Jeremy Coney, and proceeded to take-over. My extremely embarrassed husband had to go up, wrestle the mike off my brother and drag him off the stage.

I swear, if he didn't have Down Syndrome, he would have taken over the world!

His 30th Birthday
We decided to throw a surprise birthday party when he turned 30. It was a pot-luck BYO and we had quite a crowd, family and friends.

After everyone had a plateful of food, I was to start telling stories about his childhood and youth and everyone else would follow after me.

No Way!

He made me sit down and be quiet while he proceeded to go around the room, singling out every one there and did a quite superb "roast". We were almost wetting ourselves with laughter.

My parents were involved with the Disabled Persons' Assembly at that time, and he was also on the committee. He roasted Ray, in his wheelchair, and Don with Parkinson's shakes.

The crowning moment was his comment to my son's girlfriend: "I asked you to marry me! You said 'No!', what can I say?" He is such a drama queen!

How My Brother Affected Our Family
I have a retentive memory, and I remember very clearly how our family was before my brother was born. We were all starting to go our merry way. For me, and my sisters, at 13-16 it was "the hippy generation", sex, drugs and rock and roll. For Mum (and me to some extent), it was Women's Lib.

Dad had a job that offered world travel, ie. freedom. Mum had a part-time job. My brother changed all that.

Over time, because of my brother, my parents became involved with, first, the IHC (Intellectually Handicapped Children), then the DPA (Disabled Persons Assembly) - which provides advocacy for people with either intellectual or physical disabilities. Mum has a hearing disability and Dad had a hearing and physical disability.

Partially because of my brother I became aware of the abortion issue and worked in the area of Crisis Pregnancy Counselling.

One sister has learned NZ Sign Language to work with deaf children, the other works with adults with special needs.

Because of my brother, our family members have become people who are aware of the special needs of others in our community. I believe we are better people because of him.

My Kids
I bought a movie called "My Name Is Jonathon" about a boy who was institutionalised by his family. My teenage boys watched that movie and one of them said: "I would so love to have a kid like that."

Why would he say that?

Because these kids are so full of love that they are love personified. I truly believe that my brother is the greatest blessing God could ever have given our family. He has enriched our lives in ways we could never have imagined. He has enabled us to be aware of the needs of others, instead on focusing on our narrow, self-centered lives.

My children have grown up with my brother. He is older in years, they are older in intellectual ability. He is their superior in his ability to love unconditionally, without all the complications that make it so difficult for them. Instinctually, they recognise that. Their friends and potential partners are judged by whether or not they are at ease with D'Arcy. The criteria for judgement is "love".

DS Kids
If you have a test which tells you that your child has Down syndrome, trisomy 21, or trisomy G. Please take the time to calm down. Medical professionals often paint the "worst case scenario" for various reasons. There are organisations around the world that can give you practical information about living with and raising these little bratty kids,

If you don't feel strong enough to raise them yourself, I can tell you that there are so many desparate adoptive parents who are longing and willing to do so.

New Zealand Down Syndrome Association

Auckland Down Syndrome Association