Posts Tagged ‘Special Needs’

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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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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