~ AN INTROVERTS WAY OF DEALING WITH CRISIS ~

2022 has been a fascinating rollercoaster ride so far. Three weeks ago, the middle son – Samuel – who is nineteen and has a dual diagnosis, Down syndrome, and Autism, began to exhibit certain worrying behaviours: not sleeping, not eating, talking incessantly, flicking light switches on and off, and so on. I existed on little to no sleep. The stress levels were through the roof. I sought professional help, and we ended up seeing a behavioural specialist.
We managed to link Samuel’s behaviour issues to the many changes going on in his life and a simple error on our part of not fully explaining things to him as we went along. Because Sam is non-verbal, we can sometimes forget to include him in the conversations about what is happening in our family. It is easy to overlook that he is affected by every decision we make and therefore needs things explained to him every step of the way.

Frankly, a lot of things have altered lately. Sam’s father decided he would sell his house, intending to move to the countryside. He started renovating the house, and his flatmates moved out. Sam’s younger brother (and best mate) stayed at dad’s house for three weeks, helping him to paint the exterior. All these major events were going on around Sam without his understanding. No wonder he started acting out.

We sat down, and I talked to him about the entire situation, moving house, the renovating, and so on.
The behavioural specialist said until the living setup and routine fully settle down, Sam may continue to exhibit erratic behaviours. “But you understand it now. It’s his way of controlling an uncontrollable situation. Let him do his little things and know that it will eventually pass.”

Heartened, I told various family members and my closest friends about what we had gone through around here for the last three weeks. The general reaction was shock. My sister said, “Tell me while it’s going on, next time. Why don’t you let me support you?” And my friends told me off similarly. One of my oldest buddies said to me today, “You know, it helps to talk about difficult things. That’s what friends are for.”
I hear what they are saying, and I get it. What they don’t understand is this is the way introverts deal with the big stuff. We live through it, figure out the answers (often with the help of professionals), contemplate the circumstances and what we have learned. When we have the issues resolved, we share the carefully considered results.
It doesn’t mean we don’t appreciate the offers of help. We do. We do things a little differently from the majority.

According to the site Introvert, Dear, an award-winning community hub:

We introverts make up 30 -50% of the population, and most of us share these characteristics:
We’d rather stay home most nights than go out to one social event after another.
We enjoy quiet, solitary activities like reading, writing, gaming, gardening, or drawing.
We’ll usually choose the company of a few close friends over a wild party.
We do our best work alone.
Many of us will avoid small talk or other unnecessary social interactions.
We usually do our best work alone.

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And, from my personal experience, when the major events take place in our lives, we wish to sort out our business by ourselves first, before we include loved ones.
Apart from irritating my family and friends with this introverted trait, I am happy to report that the worst of the crisis is over. Samuel is sleeping and eating again. So am I. Huzzah! His father and I have made a point of talking with Sam about each new thing. There are fewer erratic behaviours and more of the son we know and love.

Currently, I’m floating in a state of utter relief and bliss. My patience has returned. I can feel my face again. Now, I want to spend time with those around me and talk.

Family and friends of introverts know this. Talking to you after rather than during a crisis does not mean we don’t need you or love you. We need to process our experiences in a private way before we share. Is that okay?
To my fellow introverts, I say: It is essential to honour your real self and what you need for bliss. The world needs more contemplative, calm people. It is fine to be an introvert and do things your way.
Let us celebrate our differences.

How do you process the big stuff? By talking it through with folks (extrovert) or talking about it after the fact (introvert)?

Talk to you later.
Keep creating!
Yvette Carol
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“Learn from yesterday, live for today, hope for tomorrow.” ~ Albert Einstein

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~ IWSG: MEANWHILE, IN NEW ZEALAND ~

It’s time for another group posting of 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. Every month, the organisers announce a question that members can answer in their IWSG Day post. Remember, the question is optional!!!

April 1 question – The IWSG’s focus is on our writers. Each month, from all over the globe, we are a united group sharing our insecurities, our troubles, and our pain. So, in this time when our world is in a crisis with the covid-19 pandemic, our optional question this month is: how are things in your world?

We’re in the North Island of New Zealand, where the whole country has been on lockdown for nearly two weeks, with two weeks still to go, unless the end date gets changed. It’s been so strange, almost haunting, as if one had gone back in time to one’s youth. The air is clear of the usual traffic fumes and jet exhaust and smells different. Clean. The streets ring with the sounds of children playing and adults talking. There are more cyclists than cars on the road, and there are families out walking along the footpaths in droves.

It reminds me of growing up here in the 1960s.

Yet, it’s not like the memories I keep of my childhood because this bucolic idyll is fraught with tension and a keyed-up state of general anxiety. As my friend said the other night, in our virtual drinks, re the Covid-19 virus, “I could have it, you could have it, we could all have it,” and that’s the uneasy truth we’re living with. Every visit to the supermarket, every outing, we feel we’re literally risking our lives. And we are.

Those of us who are parents are also trying to help our children deal with the stress. I have three boys. My two younger boys, my nephew and I are in our “bubble” over here, and my eldest is in a bubble with his own little family on the other side of town. At present, I’m worried about my eldest and his twenty-two-month-old baby. My darling granddaughter has a fever and they’re not sure what it is yet. I’ve been receiving constant updates and staying in contact with them.

Thank goodness for the Internet.

My youngest son has immersed himself either in online schoolwork or in gaming and watching anime. He practices the trombone and drums. He’s not worried about a thing, he is as happy as a sandboy.

My seventeen-year-old Sam has Down syndrome and does not understand the pandemic or anything about lockdown. All he knows is that everything is suddenly different. His weekly chart of activities went from being full with school every day, and extracurricular activities, dance class, gym training, and basketball at night to being stuck at home on endless holiday. For a special needs person, they thrive on routine, and they like things to be the same every day. All Sam knows is the personal disaster of everything changing and becoming different suddenly. His reaction is to act out, to do silly things, or to freeze up and refuse to cooperate with even the simplest of requests. As Sam can’t speak, bad behaviour is his way of expressing himself. However, he’ll get used to the new normal given time.

I’ve been enjoying the virtual meetings. I’ve been attending Toastmasters’ meetings via Zoom every Wednesday. They’ve been a lot of fun. It’s so nice to see everyone and see they’re doing well. I think connecting in whatever ways we can is uplifting. I also attend Friday night virtual drinks with old friends, via Zoom. We’ve known each other since schooldays. We’ve called our soiree “cocktails & pigtails,” and we wear our hair in pigtails, too, for the laughs. I’ve been so grateful for my friends, and I’m on the phone daily with my family. We’re checking up on one another.

I’ve been busy, more so than ever, since lockdown. I’ve been an editing machine and in two weeks, I have edited the entire manuscript of my work-in-progress twice! I’ve also been communicating with the book designer and figuring out how we will redo my first two books and do the design for the third. With luck, I’ll stay on target for publishing The Last Tree by June. I’m still going after my dreams, despite my insecurities, virus or no virus, lockdown or no lockdown.

What about you?

Keep Writing!

Yvette K. Carol

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“Life is the love that reaches out, building bridges across gulfs of uncertainty to touch hands, hearts and souls in the experience of union,” – P. Seymour

~ SCHOOL’S BACK ~

The school year is off with a bang! It’s like going from zero to sixty in a matter of seconds. I’m ready for a holiday already. I’ve been running around like a headless chicken as the school year typically begins with a list of the kids’ “required items,” uniforms, stationary, sports uniforms, footwear, school fees, sports fees, and there are endless emails to read from schools, sports clubs, teachers, and coaches and so on. In the last two weeks, between the two boys, with the school gear and stationary lists, and the various items needed for camp, I’ve been on the phone, online, making purchases, making lists, dashing out to the shops, going here and there, buying things and finding obscure items like heavy duty gumboots, insect repellent and aquatic shoes.

The youngest son began his second year of high school last week. In that time he has already impressed his math teacher by being the only student in the classroom to figure out the difficult math puzzle he put to them. That night when he was telling me about it, he said, “Me, big brain,” which made me laugh. He has that dazzling self confidence that young people do before life has bashed them around a bit. My nephew is always telling him, “You don’t know everything, you realize that?” I think it’s a great and admirable thing about youth when they believe anything is possible. I like to emulate that. He has been away with the other Year 10s on a school camp this week. The house has been resoundingly quiet without him. I never realized he made so much noise.

Sam-the-man, my seventeen-year-old with Down syndrome started his first week at the Transition Centre. He loves it, thank goodness. Parents of special needs kids always feel trepidation approaching any change in circumstances for their children like changing schools, moving houses, or taking on a new carer supporter. You never know whether your child will flip out this time or display a delayed reaction by “acting out” later at home. As one of the two students from his high school to be picked last year for the coveted positions at the Transition Centre, I wanted him to be ready, but I still wasn’t sure. He seemed too young and immature to be at what is essentially the special needs equivalent of a university or a job training facility. Was he ready? I didn’t know.

On Monday they picked Sam up in a big Mercedes bus taxi. On board were a small crew of able-bodied young people with special needs aged between seventeen and twenty-one. They were the other kids going to the Transition Centre from around our neighbourhood.

According to the timetable, they spend their days working at local farms and tree nurseries. Some days, they do fitness, swimming, arts and crafts, and literacy and numeracy classes. It’s a far more grown up week. Even after his first day, Sam came home looking more confident. His teacher tells me he worked hard and “he responds really well to praise.” I gladly put my fears away, because Sam comes home each day with a new sense of purpose in his stride. He was ready for the step up.

Sam’s dance class began their first term of the year on Tuesday. As the night of the class has changed and it no longer clashes with my schedule, I take him. It’s a great excuse to sit and read for an hour while taking peeks at his progress. Sam picks up the new moves quickly. The other girls in the class seem to take him and his sometimes quirky antics and lapses into freestyle in stride, and the teacher carries on teaching! It’s a tolerant environment for him to grow as a dancer. And he’s started going to the gym on Wednesday nights again. I’ve been providing the taxi service for the various activities.

As the summer holidays draw to their end, I always think the kids going back to school will be a cinch. With all your beach days behind you, you can take anything life brings. Then the first week of school happens and you feel as if you have been “run over by a truck.” The first week or two back at school, the boys and I are exhausted and grumpy. It takes a little while to get the cogs greased and the wheels of the school bus turning again. However, the challenges of the New Year arise and we have to grow to meet them. It’s a process.

We’ll get there, aided in no uncertain terms by good music, family, friends, meditation, and good food.

Talk to you later.

Keep on Creating!

Yvette K. Carol

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My mother had a great deal of trouble with me, but I think she enjoyed it. ~ Mark Twain (Samuel L. Clemens)

~ What a Week ~

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.

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.

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.

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.

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?

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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~ 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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~ TOP TIPS FOR RAISING TEENS ~

The stage that I’m at now with my kids, the eldest has his own family while I still have two teenagers at home. The youngest is halfway into his first year as a teen. He’s navigating new waters of social interaction with his peers. He’s figuring out how to stand on his own two feet. The middle son is special needs, with Downs’ syndrome and Autism. But, if you take some broad sweeps of the brush, there are many ways in which adolescence is universal.

Being a teen is confusing

Life suddenly becomes more complex. For instance, the youngest has become embroiled in intrigues and dramas at school between the groups of friends. He’s stuck as mediator and counsellor and he’s trying to unravel seemingly endless knots of disputes. There’s tension in every section. He comes home from school, more often than not, frowning, talking to himself; chock full of “teen angst.”

It’s pressure-filled

You would not believe the amount of pressure these new teens put each other under to ‘find a girlfriend or a boyfriend.’ By the second term, the youngest had gained a “girlfriend.”

It’s a rollercoaster ride

Luckily, he doesn’t expect me to help. He only tells me the occasional insight, the shortened update that comes after he’s figured something out. I’m glad for that. Even the précis of his adolescent spats, are so convoluted they could suck all time for productive worthwhile endeavours into them like teenage black holes.

I do not envy my boys this stage in life. I wouldn’t go back there for a million dollars.

What can I do, as the parent of these teenage boys?

I’m constantly juggling balls in the air, balancing the day-to-day stuff of running a family, while walking the knife edge of constantly gauging their wellbeing. When you’re the mum in such a situation as this, you learn to spot fires and put them out before they get out of control. If you don’t want World War Three in your house, you get to vet the teenagers’ emotional, mental and spiritual wellbeing throughout each day.

I think parenting teenagers is just as exhausting as the pre-school years. It takes every ounce of savvy and screws every drop of resolve out of you, and as with all parenting, it requires your time and doesn’t let up for a minute.

With the middle child’s recent diagnosis of autism, I’ve learned to apply the rapid salve of one-on-one time. Instead of waiting for the teenage angst to send him to Mars, each time I notice him becoming restless, I suggest we do an activity together.

We’ve played cards, board games and balloon tennis. He’s responded wonderfully to this diversion tactic, and there have been less aggressive outbursts.

While having one-on-one time works with my special son, it doesn’t work as well with my youngest son, who is starting to value hanging out with his friends, on line and at school, above spending time with mum.

I googled ‘tips or how to raise teens.’ These are my own versions of the tips which have worked for me, so far:

Let them grow up

A bit of trust goes a long way. Teenagers want to be respected. I’ve given the youngest more rope this year than he’s had before. This year, he’s started to stay late after school, and visit friends on the way home. He’s got a later bedtime and has more freedom.

Set out the guidelines

I’m a firm believer in letting the kids know what the rules are in the house.

Give them more responsibilities

Let them do more around the house and do their share.

Have consequences

When the rules are broken, it’s time out on their own for ten minutes and they can’t return to the family until they’re ready to apologize.

 

Have an open ear

I try to be as open minded as possible. If he feels safe to talk to me, and knows he can trust me, we’re on a good footing.

Talk about risks, discuss game plans for dangerous situations

I try to teach the youngest on how he can protect himself on the internet and in public. On a practical level, it’s important for teens to have a plan for what to do if they need help.  I always make sure the teenager has a cell phone with credit, and that we run through game plans ahead of social situations. I let my teen know that he can call at any hour, and I’ll come get him. The best I can do is provide the information and the safety net. And, pray like crazy, of course.

Hope that helps!

Talk to you later.

Keep on Creating!

Yvette K. Carol

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‘…if you have raised a few teenagers you will understand that there is some point when sanity is questioned (yours not theirs).’~ Ann Kaplan

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~ I THINK MY SON HAS AUTISM ~

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.

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.

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.

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.

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

*Figure out the motivation behind the tantrum. It’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!

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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~ 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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