Archive for the ‘Down Syndrome’ Category

School started again this week. Talk about from “whoa” to go. We went from sleep ins and no schedules, to waking at the crack of dawn for exercise regimens and sports practices before school, multiple appointments for everyone, and extracurricular activities after school. I feel like I’ve been running since my feet hit the floor at 6 a.m. Monday morning. It has been an utter madhouse around here.

The youngest son sprained his ankle at the end of last term. We’ve been doing a regimen of exercises each day and attending physiotherapy each week. The middle son needed an eye exam on Tuesday and new glasses.

The guy turned up to finish the trimming of the hedges leaving me a piles of branches to dismantle.

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There has been a bombardment of emails from schools, sports coaches, music and dance teachers. A lot has been going on.

One of the things I did this week was to take my sixteen-year-old son with Down syndrome to the University, to take part in a study on Keratoconus, the degenerative eye disease which can often affect those with Down syndrome. If the disease goes undetected, the changing shape of the cornea can lead to progressive vision loss. I was told my boy has two lumps on one cornea and one on the other. So we will be screened again to monitor changes. We were lucky they picked it up. And since the study being done will be of worldwide significance, it was a win-win situation to participate.

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By Wednesday night, I was exhausted. Yet, the youngest and I had to stay up late and bake the scones he takes to school each day in his lunches.

Yesterday, I had the kids to organize, a full day of errands, plus the grocery shopping. I was feeling dispirited.

It’s at times like these that I miss my mother, who passed away in 2015. Ma had an uncanny ability to tune in when I was going through difficult times, and she would give me a call. When I visited my parents in their small seaside town every five weeks, mum would have flowers in a vase in my room and a hot water bottle heating up my bed at night. She surrounded me with love and a feeling of being of cared about.

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I remember there was this one time that happened six years ago. After working on my middle grade story for years, I had submitted the manuscript to an international story competition, the prize offered was book publication. As an unpublished author at the time, the prize was considerable. On the official website, they said, those who don’t hear back are the finalists. I didn’t hear back so naturally I was jubilant. Until upon further enquiry, I discovered that not only had I not made it into the finals, but the organisers had not received the manuscript at all, due to my fatal error in calculating the time difference between the countries. I’d missed their deadline by a day.

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In my mind, I had thought I was close to breaking through the glass ceiling. Instead I was back at square one. Devastated, I fell into a black hole that lasted for seven days. At the end of that week, I got a phone-call. I heard my mother’s voice. She said, “The darkest hour always comes before the dawn. You may think all is lost right now, but it isn’t. This is just the start of great things opening up for you. You’ll see!” I remember I wept. Even though my mother was failing in her later years, she always knew when to ride in on the silver horse.

Yesterday, there I was going through the motions of my to-do list and feeling weary. I wished I could turn back time and pick up the phone to hear Ma’s voice saying something wise and knowing and caring.

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Then, as I went about doing the family grocery shopping, I began to find a gold coin here, a gold coin there on the ground. And I thought of Ma. My mother was famously generous with her cash. She was always slipping me a fiver, that sort of thing. It was almost as if Ma was giving me little gifts from heaven. I don’t know if it was true, but it helped put a smile on my face again.

Sometimes it doesn’t matter whether a thing is “true” or not, it just matters that you believe it. Sometimes it’s that small leap of imaginative faith that gets you through to the other side of things and you feel better. Onwards and upwards, I say.

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Talk to you later.

Keep on Creating!

Yvette K. Carol

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No man can ever appreciate the debt he owes his mother, but sometimes a little thing may come up to set him thinking. ~ Edwin Robinson

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012 (16)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.

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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.

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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.

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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.

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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.

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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.

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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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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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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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.

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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.

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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.

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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.’

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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.

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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

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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?

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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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15 September, 2002

The worst night yet for aches, pains, difficulty turning over and lack of sleep. I woke at 4.22 a.m. with the conviction the Braxton Hicks (false labour pains) had changed nature and were stronger. Fortunately, I remembered to breathe.

Some people dismiss keeping journals, however when you’re looking back at one of the major events of your life, after a period of fourteen years has elapsed, and you think, I’ll look that one up, you realize the wisdom in keeping a record of every day.

You have notes on the milestones in your life. This forms a precious record of your thoughts and words at that moment in time. Not sanitised by the mind, not romanticised by distance, but the fresh, raw “moment” captured.

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At this particular point in my life, 14 years ago, I was newly married to my second husband, expecting my second child. My first born child had been delivered when I was a teenager, under crisis circumstances. I’d always had the dream of getting to experience a planned pregnancy, in a family situation.

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It was great to have my husband here, because I felt like a ‘space cadet.’ My head was spacey, my belly felt firm like a melon, my whole body seemed to be vibrating, the cells skittering. Throughout the day, the contractions fluctuated in time and intensity, sometimes bearable, sometimes unbearable. I didn’t feel afraid. Rather, I felt joy; at the “second chance” I’d been given.

Whew. This excerpt takes me back so clearly to this day.

After a long, difficult and traumatic birth, I remember, I climbed from the birthing pool into bed, at last. My husband and I waited for the baby to be cleaned up and examined.

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I wrote in my journal, Instead of our emotions rushing into euphoria, we both felt there was something wrong with the look of his face. Our midwife said she had to tell us, she thought our baby might have Down Syndrome and our emotions rushed into shock and fear instead. We held him and looked at him. He was born at 1.26 a.m.

My own words bring it all back so clearly.

I sit here shedding a few fresh tears at the memory of how devastated we were at the time.

The day followed in a blur of visitors, texting, breastfeeding, and talking, and at the end of the day everyone left.

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After dinner, I wrapped Sam in blankets and lay him on the bed in front of me, so I could sit with my legs stretched out on either side of him.

Watching my baby and stroking him, I began to truly connect for the first time and feel my heart start to break free of its bonds to stretch towards him.

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At 9 pounds 11 ounces, and long-bodied with it, he was a lovely plump size. And his nature was beautiful, compared to the other babies I could hear wailing and crying, Sam never cried at all, he radiated a gentle sweetness.

From that moment on, Sam and I began our mother-son bond, a connection that has steadily built with every day.

It has been a long and interesting road these last fourteen years with my middle child, my special boy.

We went from the grief and devastation of the early days, to the dawning realisation we’d been graced with a little Buddha in our midst.

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This masterful character who has a heart as pure as driven snow, a spirit as unbreakable as steel, and a wisdom that is as earthy and real and grounded as you’re ever going to meet, has changed us and our lives for the better, forever. None of us in Samuel’s immediate family or even range of influence altogether will ever be the same again.

Little did we know, in our “green” state back in 2002, the miracle that had taken place on that day.

On the 16th September, at 1.26 a.m an angel was born to us. And, we had been forever blessed.

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16 September, 2016

I woke this morning and my first thought was of my middle child, my wonderful son, Samuel, who turns fourteen today.

Happy Birthday, my darling son

You are perfect in every way

You teach me every day how to slow down, how to listen and be happy

Thank you

I love you!

Mama xxx

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Talk to you later.

Keep on Creating!

Yvette K. Carol

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The hero’s redemption (and ultimate victory) hinges on their transcending their self-concern. And it rarely happens unless the writer brings the hero to the point of despair. ~ PJ Reece

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