~ THE ROAD LESS TRAVELLED ~

I got caught on the hop this week. I discovered on Tuesday that I was due to give a speech at Toastmasters the following day, and I had to come up with something in a hurry. I thought about Sam, my sixteen-year-old with Downs’ syndrome. In the four years I’d been in Toastmasters, I had not tackled the big issues. I’d spoken about all kinds of major things, but, I hadn’t had the courage to talk about Sam, and Downs’ syndrome, or anything about my life as a “special” mum. I still haven’t had the courage to talk about about my youngest son, who has Congenital Heart Defect, and the life and death surgery he went through twice at the tender age age of five. Similarly, I have yet to give a speech about my grandmother’s death, or those of my parents (both deceased within the last four years). I didn’t feel I could do them justice.

But, when Toastmasters asked me to do my first speech of the year, I decided the time had come to delve a little deeper and share more of my personal stories. In Toastmasters, they say that personal stories are the most powerful, they are the speeches people remember. I decided I would share the story of Sam’s arrival in my life and being a parent of a special needs kid. The speech title, ‘The Road Less Travelled,’ comes from the last verse of one of my favourite poems, The Road Not Taken, by Robert Frost

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.

I opened my speech by recounting the story of Sam’s birth, in more or less these words:

When I was pregnant with my second child, I was thirty-six. My doctor recommended I take an amniocentesis test, which tests for any abnormalities in the child. I agreed and booked in for the test.

But, the night before I was due to go into the hospital, I woke up at exactly 11 o’clock at night, with an epiphany. I sat up in bed and asked myself,

‘What would you do if there was something wrong with the baby?’

I knew I could not go against my moral code and abort it. So, literally at the eleventh hour, I cancelled the test.

Some months later, after a difficult birth, my midwife handed the baby to me with the words, “I’m sorry, but I believe your son has Downs’ syndrome.”

My world, my life as I knew it up to that point, ended, and a whole new life began in a whole new world. It was one I knew nothing about, and I had a lot to learn!

Downs’ syndrome is a genetic condition which results from a third copy of the 21^st chromosome.

One in six hundred babies are born with Downs’ syndrome every year in New Zealand. The condition entails delayed development, low muscle tone, and this combined with a large tongue makes it very difficult for many Downs’ syndrome kids to talk clearly. 70% of girls with the syndrome will be understood by anyone outside their immediate family and that figure drops to 40-50% for the boys.

The things that our normal babies take for granted, like sitting up, standing, walking, none of these things come easy for a special kid. Every step is hard won. Sam was three-years-old before he could crawl, five before he could walk, eleven before he was potty trained during the day and thirteen before he was dry through the night.

We special parents say, ‘it’s like taking one step forward, two steps back.’

Therefore every milestone achieved, every hurdle crossed, with these kids is such a triumph. You feel so proud of them you could burst. I know how hard Sam has worked to learn how to do every little thing.

Being a special needs parent has enriched my life. Sam has taught me so much; I have gained so much from his example. He’s taught me humility, patience, tolerance, compassion, forgiveness and how to care for the underdog. I would say most of all, he has taught me how to be present. For Sam, there is no future. He doesn’t have the ability to look ahead and imagine outcomes, there is only right now.

Sam is always present. That lesson in itself has been a gift.

The road less travelled by continues to reap dividends, and I am so grateful I accepted the challenge.

Thank goodness. Imagine what I would have missed out on!

Talk to you later.

Keep on Creating!

Yvette K. Carol

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“There’s not one path. There’s not even the right path. There is only your path.” – Nietzsche

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~ BAD BEHAVIOUR ~

What a week! There is this thing kids with special needs do sometimes, which myself and friends who have special kids like to call, “running with Diablo.” It refers to those inexplicable times that come around with cyclical regularity, when our kids go off the rails for a short time.

Overnight, they go from sweet and obliging to fickle and resisting.

I’m not sure what sets Sam-the-man off. Our fifteen-year-old with Downs’ syndrome will periodically become impossible to deal with. What causes it? I’m not sure.

It never lasts more than a few days, yet while it’s here, he can cause merry havoc.

Sam’s been running with Diablo this week. Yesterday, his teacher rang to say he’s not listening to any of the teachers in class. The day before, the taxi driver had to move him to the back seat, because Sam kept taking his shoes off and putting them in her face as she was driving. On Tuesday, my neighbour came to tell me Sam was in his school uniform lying on the grass verge. We ran down and there he was. He must have gotten off the taxi outside our house, as usual, but instead of walking up the drive to the house, he’d walked along the street and lain face down on the grass verge. Luckily he was unhurt. I thanked my neighbour and brought him inside, thanking our lucky stars as well.

The rest of the time, Sam’s a model child! He will do everything he’s asked. He knows his daily routines, though he still needs a parent there to keep him on task. He can do everything for himself with guidance. It’s taken a lot of work and patience over the years to get him to this level of independence, but we’re here and so proud of his progress.

Sam’s doing really well in school and in general. He’ll happily sit and do his homework for an hour with his carer supporter in the evening. He’ll do anything he’s asked with a smile on his face that melts your heart.

Then overnight, Sam is the exact opposite, he won’t do a thing I say, and he won’t go along with a single thing the family is doing. He plonks himself down and refuses to move. It’s like a switch is flipped. I talk to him a lot at these times, to explain why he has to do a thing. If he hears enough that makes sense to him, he’ll cooperate.

Next week, I’m attending another child behaviour workshop run by Sam’s school. A special needs mum needs tools in her kit!

The best tip I ever heard was “Distraction! Distraction! Distraction!” and it’s the parental trick I use with Sam most often.

They say the mental health of someone with Downs’ syndrome is five years younger than their physical age. Therefore, Sam is mentally around ten.

When his behaviour derails, and he’s sitting on the floor refusing to get up and walk to the taxi, I divert his attention, “Oh, did you see that bird?” “Did I tell you about the thing we’re doing this weekend? Come on, get your shoes on and I’ll tell you.”

And the second best tip would be momentum. Once you’ve got them moving in the direction you want them to go/doing what you want them to do, KEEP GOING, do not stop!

Momentum is your friend.

A friend asked, “How do you cope?” Some days are harder than others.

Sam-the-man tests me sometimes to be more resourceful, and he keeps all of us on our toes. There are times when he’s locked us out of the house, or taken something important, like the remote for the garage or a personal device or car keys, and hidden them.

We’ve lost many tv remotes and devices over the years that the phenomena even has a name, we call it a “Sammy special.”

The fact is it’s not easy, and as a parent I am tired a lot of the time.

I’m not sure whether his cyclical bad behaviour is a childhood thing he will grow out of or not. I remember my father asked me a couple of Christmases ago, “How much do you think Sam will grow up?” And I said, “I don’t know.” That’s the thing. The future is unknown. We’ll find out when we get there, I guess.

Meantime life is never boring, and I wouldn’t trade Sam for all the money in the world.

Talk to you later.

Keep Creating!

Yvette K. Carol

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There is no end to the adventures that we can have if only we seek them with open eyes. ~ Nehru

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~ The Gifts of Disability ~

Our fifteen-year-old Sam-the-man has the face of a flower and the temperament to match. People love him. ‘He has something special,’ said a friend, ‘he’s open.’ At the same time, the fact he has Down’s syndrome means he is five years younger mentally than his actual age. So, while his physical self might be fifteen, his mental self is 9-10-years-old. And just as when you have a small child, when he leaves to spend the weekend with his father, the first thing that needs to be done to restore the house to sanity is to clean up.

Having a child with special needs is like raising a perpetual child. There are joys and there is continuous work to be done.

As the parent to a special needs child, there is only the unknown instead of a finish line in sight. I use the metaphor of ‘the child who can never grow up’ to try and share my understanding thus far.

Sam’s our Peter Pan. God love him, he does a chore when I ask but, as the eternal child, he simply also creates a mess wherever he goes.

There’s always a sea of crumbs extending out from where he’s been sitting and sometimes funny smells, I find old bits of food, sticky patches on tabletops, writing on the wall, or the furniture, and globs of unmentionable things. The bathroom always needs a good clean.

Sam has no concept of keeping track of things or the consequences of his behaviours. Sometimes, I find a random object has been broken, or – as I did yesterday, I literally walk into a sea of orange juice and discover that Sam had spilt his drink. He’d put the cup away carefully in the kitchen and then moved to a room where there was no sticky juice spilt all over the floor and started playing happily there. He would have been completely oblivious to the possibilities that could follow leaving a sea of liquid on the floor. Luckily, I was barefoot and ran away for a mop and bucket.

I looked into Sam’s guilt-free, innocent eyes afterwards, and I marvelled at him anew. His motivations are never vindictive, his motivations are always pure. He doesn’t have a mean bone in his body. He’d never hurt someone on purpose. His mind doesn’t work that way. It’s not preoccupied.

Sam doesn’t worry about things, he doesn’t anticipate harm. He’s always right here now in the present moment.

A year ago, it took me six weeks; from the moment the first bruise appeared on his legs, to realise someone was harming him. I discovered the boy called James next to him in the taxi, was a serial abuser, who had a reputation for hurting other kids. Sam had suffered this boy’s advances, an hour each way, to school and back every day, and never said a word, never showed any change in the way he felt about going to school or coming home.

And he’s intelligent, Sam is smart. He can read, write, use a computer, he can use any device after watching someone use it once. He’s not dumb. Although he can’t speak clearly, he can get his message across. No. It wasn’t about being unable to communicate the fact he was being bullied every day. Rather, it was his ability to take anything in stride and to be in the moment. The bullying didn’t exist the instant he left the van or prior to getting back into it, simply because it wasn’t happening before of after.

Yes, Sam teaches me every day.

Anything that happens in his life, he’s able to take it in stride. It’s like living with a mini guru.

I remember when Sam was born and we found out all the facts like one baby in 600 is born with Downs’ syndrome, they still don’t know why. We found out the official name is Trisomy 21 which stands for the extra chromosome.

Being classed as a “severe disability,” the embryos can be aborted right up till birth.

His father and I had no idea then, the amazingly transformative journey which lay ahead of us, raising Sam: through all the trials and the tribulations, through the years of watching him struggle, taking one step forward three steps back, to achieve every little milestone other children take for granted.

It took Sam a year to be able to sit by himself, four years to learn to walk; it took him till the age of ten to be able to walk down a flight of stairs, and thirteen years to become fully toilet trained. Everything he’s learned has been hard-won. Yet, that has made every goal achieved much more satisfying. To watch Sam today wash himself in the bath, dress himself, shave his own stubble, and walk confidently to the taxi in the morning, I brim with pride, because I know how far we’ve come. And I also know how far we have yet to go.

It’s not easy but it’s a real privilege to raise a child with Downs’ syndrome.

Talk to you later.

Keep Creating!

Yvette K. Carol

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What’s so dreadful about Downs’ syndrome? ~ Sally Phillips

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~ Who’s Human? ~

Back in 2002, when I was expecting my second child, I was 36-years-old. My doctor at the time advised me to have an amniocentesis test, which is the form of pre-natal screening we have here in New Zealand. The doctors test for Down’s syndrome by inserting a long needled into the womb and extracting amniotic fluid.

I panicked. I thought what if the results come back as positive? It was a decision I simply couldn’t make. I decided against taking the test.

In New Zealand, we were told at the time, one in 600 babies were born with Down’s syndrome.

In the UK, between 1989 and 2012, 20,000 babies were diagnosed through the new non‐invasive prenatal testing (NIPT). Of these, 92% were aborted. And, being classified as a ‘severe disability’, abortion can take place right up until birth.

I’m so glad I somehow found the strength to resist the pressure of the medical professionals around me at the time, because my second son was born with Down’s syndrome. Sam-the-man, The Sam. As my mother said at the time, he has more God in him than anyone else. It’s true. It bothers me deeply to think of the pressure I was put under during the early stages of my pregnancy to get tested.

The NIPT is expected to drastically improve the rates of diagnosis of Down’s syndrome in England, which they project will result in 102 more babies with the syndrome being detected each year. When abnormality is detected, the only counselling offered to women after diagnosis is usually heavily pointed towards abortion. In Britain, the only counselling charity the National Health Service directs women to is, Antenatal Results and Choices, formerly known as Support Around Termination For Abnormality.

These sad facts came to light recently, through actress Sally Phillips recent BBC documentary; ‘A World without Down’s syndrome?’ The acclaimed actress, mother to a daughter with Down’s syndrome, dared to ask the question, ‘What’s so dreadful about Down’s syndrome?’ Phillips travels the world and speaks to various people, including, ‘Emma’ who despite having been firm in her decision not to be tested for the condition ‘had to constantly justify her decision to medical practitioners.’

Why do we need to justify wanting to keep our unborn child?

On the award-winning Down syndrome blog, Downs Side Up, Hayley Goleniowska has a mission. That of ‘Gently changing perceptions of Down syndrome from within people’s hearts.’

This mama is speaking my language.

Hayley: My mission is now to inspire new parents, show the world that many incredible things are possible for our children, and shout out that Down’s syndrome truly is wonderful and that life will carry on, there will be challenges, but you will not regret or wish to change any of it. 

You go, Hayley!

Her daughter, Natty, was the first child in Britain with a disability to appear in a Back to School Campaign.

Our youngest daughter Natty is a clothing model, pioneering for children with disabilities everywhere. She is a true ambassador in her own right, opening doors and forcing companies to be more inclusive in their approach to advertising.

The writer, Ciarán Kelly commented sagely on the issue. ‘The new NIPT test has its roots in the Idea that some people’s lives have little or no value and therefore should be screened out from society. This is profoundly wrong. Unborn children are perhaps the most vulnerable people in our world and need to be protected. All human beings are made in the image of God and have a special, intrinsic value regardless of how young or how old, how able-bodied or disabled they might be. This does not apply only to those with Down’s syndrome. Neither does it apply only to those whom parent, family or society has deemed ‘makes a contribution’. It applies to us all.’ ~ Ciarán Kelly

http://www.affinity.org.uk/downloads/The%20Bulletin/issue-33/4)-a-world-without-downs-syndrome.pdf

Exactly. When something happens to one of us it happens to all of us. I had an incident happen within my own family this week, where I had to stand up and defend Sam against a member of the general public. And it made me aware once again of how little people really understand about these amazing gentle people. It’s such a shame. We are none of us, not Trump in the White House nor Natty the child Down’s syndrome model, any better than the other. We are all equal. That’s what my son reminds me of every day. We are all human. We all deserve to be here.

What are your feelings on who gets to be human?

Talk to you later.

Keep on Creating!

Yvette K. Carol

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#justaboutcoping, #worldwithoutdowns, #worldwithdowns

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‘The value of human life does not lie in its contribution to society at large, or even to the happiness of a particular family’ ~ Ciarán Kelly

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