Archive for the ‘Downs’ syndrome’ Category

Raising children is a fantastic journey, with lovely highs and wicked dumping lows. There are certain things that can and do happen along the way every parent dreads: the scrapes, the bruises, the childhood ailments and other tales of woe.

As a parent, you go along and everything flows nicely, and then, suddenly you get hit blindside by a really bad day.

You get that letter from the teacher, asking if they can phone you, (for a chat about your child’s bad behaviour). Or you get that phone call from the nurse at school, to say your child is sick in the sickbay, they’re not looking well, and could you pick them up straight away. Or your normally ravenous child looks pale and doesn’t want to eat breakfast. You get that horrible sinking feeling.

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The bad day started when I noticed the middle son wasn’t eating.

I asked him what’s wrong. He said, “My back.” As he has Downs’ syndrome and can’t communicate clearly, that was all I could get out of him. Of Downs’ syndrome people, 70% of girls can be understood by anyone outside their immediate circle, and of the boys, that number falls to only 50%. In my son’s case, he doesn’t speak clearly at all and the amount I can understand is limited. I left a message with an osteopath, requesting an appointment to help my son today, if possible.

There was no response for most of the day, and in that time there was still work to be done. I couldn’t leave my son at home alone, so I had to take him with me. He seemed fine, he helped me doing the list of things that needed doing today: glasses fixed, running errands, doing the week’s grocery shopping.

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Halfway through the supermarket, the osteopath rang with an appt. for late afternoon. I was relieved he was able to fit us in.

We came home with the groceries, and son ate a treat of hot chips. From that moment on, his condition started to decline. He was sitting in his chair, white faced, groaning slightly. Feverish, he wiped sweat off his face with tissues.

I tried to get an appointment with our G.P, but they were fully booked. So, I thought we’ve just got to wait it out till we can see the osteopath. Poor son vomited the chips. However, the colour did come back into his cheeks after that, so maybe it helped.

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The middle son’s “carer supporter” is a nice Korean man. He arrived to do his usual two and a half hour stint with us. Upon hearing middle son had a sore back, he asked him if he could touch his toes. Son could only go down halfway before he said, “Ow.” So we knew where the pain was.

In the osteopath’s clinic, he gave him an adjustment and said my son had twisted his pelvis. He said, “He should feel much better, but if there are any issues, come back again in a couple of days.”

The middle son looked happier, and said he felt better. Thankfully, he seemed to have turned a corner for the better. But this is the thing with children, you never know when they’re going to really recover or go downhill further. I found the whole thing today with my boy quite terrifying. Because he couldn’t tell me what was going on for him, I had to read his cues, and test his temperature and check on him all the time.

But, I have learned to be vigilant with my kids’ health, because they’ve each had serious health issues.

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The latest with my youngest son has been his hearing. He has been the subject of much speculation in the family, over the years, as to whether his hearing was 100%. I decided to have him tested in January of this year. The appointment finally came in, seven months later.

We rocked along this week, and I was fully expecting that they were going to say, his hearing was perfect. It would turn out he had been choosing to ignore me all these years. But no, to my surprise, we learned that he has hearing loss in one ear, and the other side appears to have a “retracted eardrum.” We have been referred to a specialist and also given another appointment for a follow-up with the same hearing clinic. We’ll see where we go from here.

Everything that happens to your kids has the power to hurt you, too. Adulting sucks sometimes.

Still, I wouldn’t be without my kids for the entire world. What about you?

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Talk to you later.

Keep on Creating!

Yvette K. Carol

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The darkest night is often the bridge to the brightest tomorrow. – Jonathan Lockwood Huie

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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.

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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.

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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!

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

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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!

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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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From the time he was small, my son Samuel has had episodes of erratic behaviour. Talking with my friends who also parent Downs’ syndrome kids, I discovered this can be part of the syndrome. Small stints of bad behaviour seemed to come about in cyclical fashion, and among our circle, we called it ‘running with Diablo.’ Our kids would run wild every now and again, and then it was over as fast as it started. No problem.

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Sam’s episodes have always been doozies though. I put that down to his being a strong, forceful character, a little volcano that needed to let off steam like Mt. Vesuivus. From the age of five-years-old to ten, Sam’s mischievous escapades were epic. He once carried the entire contents of the fridge and freezer into our living room and spread it out on the floor while I was putting out the washing. He once escaped the house by climbing out of the living room window at two o’clock in the morning. One time, he was walking along nicely beside us as we went to school and on the turn of a dime, he burst into running full tilt across the road in front of a Kenwood truck. In the latter two cases, Sam was lucky not to have been killed.

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Sam is no longer a ten-year-old. Now, he’s fifteen, and he’s bigger and stronger than me. His behaviour this year has steadily deteriorated. Tonight, he decided he was leaving with our carer supporter, who had spent a couple of hours helping Sam with homework. Neither the carer supporter, nor I, could stop Sam’s focused march down the drive as he repeated, “Good morning, Sam” over and over. He refused to listen to reason.

For the first time, I felt really afraid, that we’d lost control over him. I couldn’t see the boy I knew in his eyes anymore, his eyes looked blank, and the pupils widely dilated like that of a cat with the wind in its tail.

Then, I remembered something said by a friend whose child is autistic. Her child’s behaviour had gone off the rails at the onset of adolescence. Medication had helped, though it had been trial and error to get the medication right. I grabbed onto this idea like a lifeline. I sent her an email.

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I also remembered a neighbour telling me, her autistic child had started eating chalk and wire. However, medication had stopped the behaviour and he was attending a normal school. Maybe there was hope we could come out of this ditch, too.

The thing is, when Sam was small, he was diagnosed by a specialist as having a dual diagnosis: Down’s syndrome and Autism. But, somewhere along the way the ‘Autism’ tag got dropped. Tonight, I realised, Sam is autistic. He is a dual diagnosis. It might have gone into a latent period, for some reason. And, potentially, in Sam’s case, the trigger for setting it off again was my father’s death. Sam’s behaviour has been totally unpredictable ever since dad died.

I looked up Autism to read about it a bit, to see if my hunch was correct.

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This from Wikipedia: Autism is a developmental disorder characterized by troubles with social interaction and communication and by restricted and repetitive behavior.[3] Parents usually notice signs in the first two or three years of their child’s life.[1][3] These signs often develop gradually, though some children with autism reach their developmental milestones at a normal pace and then worsen.[9]

Tick, tick, tick. All these things applied to my son.

Then, from HELPGUIDE.org I found some tips on How to help your child with Autism thrive

*Provide structure and safety

*Find nonverbal ways to connect

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*Figure out the motivation behind the tantrumIt’s only natural to feel upset when you are misunderstood or ignored, and it’s no different for children with ASD. When children with ASD act out, it’s often because you’re not picking up on their nonverbal cues. Throwing a tantrum is their way of communicating their frustration and getting your attention.

*Create a personalized autism treatment plan

*Find help and support

I decided to reach out for support.

I had joined the Crippled Children’s Society years ago, so there would be someone to advise me on things to do with disability, when needed. However, I never used the service. Tonight, I sent an email to my advocate at CCS, titled, ‘Help.’

We need to see a specialist and sort out a treatment plan. Wish me luck!

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Talk to you later.

Keep on Creating!

Yvette K. Carol

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“Don’t waste a minute not being happy! If one window closes, run to the next window – or break down a door!” – B. Shields

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Subscribe to my Newsletter by emailing me with “Newsletter Subscription” in the subject line to: yvettecarol@hotmail.com

It’s time for this month’s group posting with the Insecure Writer’s Support Group! Time to release our fears to the world – or offer encouragement to those who are feeling neurotic. If you’d like to join us, click on the tab above and sign up. We post the first Wednesday of every month. I encourage everyone to visit at least a dozen new blogs and leave a comment. your words might be the encouragement someone needs.

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OPTIONAL IWSG Day Question: What are your ultimate writing goals, and how have they changed over time (if at all)?

That’s a brilliant question because it really made me sit back and think. My goals have changed a lot. When I started penning kids’ fiction as a seventeen-year-old, I was far removed from the reality of being an author.

Believe it or not, when I started out, personal computers were not yet a thing. Although some people had them, no one I knew owned one. And the internet was just a twinkle in the eye of a brainiac, somewhere. I spent the first decade writing the good old fashioned way, with a pen and paper. I was a teenager, starting out in the 1980’s, just following the thread of what interested me in terms of subject matter and genre.

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I worked a string of other jobs and often second jobs as well. Writing stories was what I did in my spare time, and it still is.

When I started out at seventeen, I wasn’t thinking of publication. I was impelled to share my creativity through children’s stories, so I followed it. It took me another ten years to start submitting to publishers. My ultimate writing goal at the age of twenty-seven was simple, to get published and make money.

I have an old book of ‘Intentions,’ which I write up each year like resolutions. I discovered that by the age of thirty my ultimate writing goal had morphed into: “I want my books to be a huge success like Harry Potter.”

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Wow, I sure didn’t aim low in those days. I was quite surprised by the audacity of my intention.

I admit I’ve reduced my ultimate writing goals as I’ve gone along. Which I think boils down to figuring out what you really want to do with your time. As you grow older, time becomes more precious. The entry for 2017 reads: I raise people’s awareness and bring joy, inspire and make people feel better through the power of story.

And with age, you get more realistic. I might not be the next J. K. Rowling.

These days, I’m a stay-at-home mum and caregiver to my thirteen-year-old and my middle son who has Downs’ syndrome. I write part-time. I have two stories published and two books which I self published. My wish list these days tends to focus on more meaningful things like wanting joy, and a sense of fulfilment.

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These days my ultimate writing goal is to write more of what I love.  However, the series I’m writing is anthropomorphic fantasy fiction about insects. It gets some strange reactions at times.

I’ll never forget the response of one assessor to my book,  The Or’in of Tane Mahuta. She said, “Great story, but lose the insects!” I couldn’t lose the insects, they were an integral part of the machine of the story.

One day, I will move on to new fields in fiction. For now, I want to see this series out and do the best I possibly can.

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One of the authors I like is Lee Child, author of the Jack Reacher novels. He’s a real storyteller. Asked to give a tip recently for writers, he said, “Ignore all the tips. It’s got to be 100% your own product. As soon as you start thinking about what you should do, there’s a compromise and the spark goes. You’ve got to do what you want to do.”

Child really gets it. He’s talking about listening to the gut and the heart of the story. I love it. I’m ignoring all the tips. It’s 100% my anthropomorphic fantasy fiction about insects. If I want little critters creeping and flying and turning into human hybrids, I must write them. You’ve got to do what you want to do, right?

I wonder what my intention for 2019 will be? I think it’s going to be something along the lines of ‘I just want to be myself and enjoy the process!’

What about you? What are your Ultimate Writing Goals for 2018? Have you met them yet?

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Keep Writing!

Yvette K. Carol

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In a totally sane society, madness is the only freedom. ~ J. G. Ballard

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Subscribe to my Newsletter by emailing me with “Newsletter Subscription” in the subject line to: yvettecarol@hotmail.com