Archive for the ‘Special Needs’ Category

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

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

Being the parent of a special needs child, I really appreciate it when folks do something to help. This is an opportunity to donate your picture books, and gain a review in return. It’s a “win-win” situation!

Source: Calling All Children’s Books Authors – Special Needs Children Need Your Books!