Stubbornness Part 2: practical tips (maybe)

Following on from my last post where I waxed lyrical about why I think Wade behaves the way he does when he is being stubborn, I thought it might be a good idea to list some of the practical things I use when trying to get him to cooperate and move out of the flop and drop stage. The other thing to remember: he is a child. Children are often stubborn and the world is a confusing place for all children.

The important thing about this list is none of them are my ‘guaranteed-to-work’ solutions. Some of these things might have only worked once, or only worked for a short time before never working again. Some of these things might only work for Wade and no one else because I know what his patterns are and what will crack his code at different times. What I have found is that when I have lots of different things to try, it is more likely that Wade will think he has come up with the idea to move on himself. *wink*

  1. Give warnings and time limits.

This is not always possible but Wade’s stubborn refusal often comes when he is not given enough time to prepare for the thing I want to him to do (like get dressed), or stop doing (like put down the iPad). I can pretty much guarantee that if I walk straight up and tell him what to do, he will refuse, dig his heels in, and not budge. I can try to prevent this by talking a lot about what we are doing and why, or by giving him some time warnings such as telling him that he can watch the iPad for another five minutes and then he needs to put it away. I will then remind him at two or one minutes. Another thing I might do is give him an egg timer or a stop watch which is set to go off after a number of minutes. Now, this doesn’t actually work for me…Ha!…What I mean is, even after repeated warnings he still will not voluntarily put the iPad down or jump up and start getting dressed but it does reinforce what I want him to do, when it is going to happen and why. This means he is more likely to cooperate with the next round of things I try.

2. First/then

This is a simple concept that gets me through a lot of minor refusals (only the minor ones mind you…). Sometimes just explaining to Wade what he needs to do first before he can do the thing he wants to do is enough to help order his thoughts and stop a sit-down protest. A lot of the time, I think he just needs to know what is going on and when we are going to do it. For example, if he thinks we are going to the park but I am asking him to put on his shoes (so we can go to the park) he cracks it because he is being asked to something that is not ‘go to the park’. So, if I say, ‘shoes first, then the park’ it is enough to get him over the line.

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3. Use visuals

I didn’t use many visuals with Wade when he was young for his speech development. I found the tools like Boardmaker, PECS and PODD to be awkward and cumbersome for me. Rushing off to find boxes of pictures, flip books and boards to complete a simple sentence meant Wade usually lost interest and the moment of spontaneous and genuine communication was lost. I found that Wade responded better to music, rhyme and song for speech so I left them by the wayside.

The one aspect of these visuals that we did miss out on though was the use of pictures to help create a sense of order for Wade’s mind. Children with Down syndrome can often struggle with mental planning and the ability to hold complex instructions or sequences with many steps in their mind as they move through an activity.

So, I have come to this late, but adding pictures into my instructions is really helping now.

Here are my top 3 methods:

Pictello – This is a social story maker app and has worked wonders for us. The reason I love it is because it uses our own voices, pictures and videos to illustrate a set of instructions for Wade. I use it to show a sequence of steps like getting dressed or highlight an important concept like not going outside the gate at home.

I love that he can help make them and I often record his voice in some of the steps. I can also make them silly or funny using our in-jokes so they are more engaging and he can look through them in his own time because they are all in the one place on his iPad.

The other benefit of these stories is that I can record the audio using words and tones that Wade is familiar with. One down side of this has been, that if I use it too much, he can get a bit fussy about the way the real life activity needs to look if it differs too much from the example we filmed in the making of it. I recommend using it as a part of many strategies instead of making it the only thing you use.

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Finished board – I use these boards in the one place in the kitchen and only for a couple of different activities, namely eating meals and getting dressed (my two most dreaded times of the day). My finished board is a very simple home made affair: Two laminated A4 pages stuck on the wall with blue tac, a whiteboard marker and a couple of pictures that I found, cut out and laminated representing breakfast, dinner, getting dressed and brushing teeth.

If there is something that he wants to do that is stopping him from getting dressed or eating his meals, I put that at the end of the board. I just draw a picture of it with the marker instead of having to have infinite pictures representing whatever he might feel like doing.

This way he can see the things he needs to do before he can do his fun thing like helping grandad water the garden or read a book in bed or go to the park etc.

The second board is the ‘finished’ board. Once Wade has eaten his meal, or got dressed or brushed his teeth, he puts the picture onto the finished board; visually counting down to the fun thing.

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This photo is from when I thought I could use a favourite toy as the reward…it worked once then never again so now I just draw a picture of what he wants to do after the sequence.

Pad and pen – This is the same as the first/then concept in a way but sometimes I grab a piece of paper and draw how many mouthfuls I want him to eat before he can move on from the table, or quickly draw a first/then sequence in front of him so he can see what I am trying to say. I also have a notebook in my bag that opens out like a book (earlier picture) to reveal side by side pages so I can do a quick first/then drawing of what I want him to do if we are out and about and he is overcome by the bob-goblin of stubbornness.

Another cool visual thing that works well at dinner time is a placemat that has the numbers 1-10 with different animals for each number. 1 hippo, 2 giraffes, 3 turtles etc. I ask Wade whether he wants to eat 6 snails or 7 jellyfish or 10 frogs and let him pick what he is going to eat. Then with either a whiteboard marker or a book of stickers, I cross off or put a sicker on one of the animals as he eats each mouthful. He keeps a very close eye on my accuracy with this and makes sure I don’t miss any mouthfuls “accidentally”. By giving him the power to choose whether he will eat ‘elephants’ or ‘frogs’ and making sure I don’t “forget” to mark one, he often ends up eating his whole meal while trying to prove me wrong. *wink*

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4. Make a Deal

This is basically a combination of all of the above but a high-end-UN-level-negotiation-type thing where we run through verbally what I need him to do, what will happen if he does the thing, what consequence will occur if he doesn’t do the thing. Then I give him some options for how he is going to do the thing (choosing his own clothes/shoes/toothbrush–whatever lets him think it is his terribly good idea), what rewards are on the table and so on. This also includes giving a bit of ground on things that aren’t that important. Which is why we often eat breakfast on a picnic rug with a few toys or dinner out of a muffin tin or he wears a superhero costume out of the house for the day. I get a win because he has eaten or he is dressed. He gets a win because he feels like he is calling the shots.

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5. Rewards

They work. It’s a fancy word for bribery. I use them liberally when he does the thing I am asking. It might be that grandad gets up and does the chicken dance after he eats a vegetable, it might be hugs and kisses for getting dressed all by himself, it’s often ice cream and chocolate because sometimes that’s what it takes. I’m sure all the good parenting books say that this is wrong and children should be rewarded simply by the innate joy of ‘doing the right thing’ and ‘being a part of something larger than themselves’ but unsurprisingly (if you have read my last post) these sorts of things are just not on Wade’s radar. So I use whatever motivators I need to reinforce the thing I need to get done. I often need a range of things to choose from but #whateverworks

6. Keep calm and stick to the deal

My biggest weakness in all this is the necessity to keep calm. The minute I get frustrated, angry or prone to punishment, I have lost. I am not going to pretend this doesn’t happen. Did I mention he is stubborn and I’m a Taurean?! I definitely lose it but I know it is futile. If I stay calm, stick to the deal and quietly–without shame or anger–follow through on the reward or consequence, then he does understand and will usually come around…I’m not going to say it happens quickly…but we get there in the end. I usually give him a couple of chances to stick to the deal, then I do a countdown which triggers the consequence (read more about that here). The consequence is usually missing out on the thing we are working towards.

Even if he really wants to do something, for some reason he just won’t do the steps in between to get there. Getting dressed and leaving the house is a big one. We could be going to a circus on horseback dipped in chocolate and rolled in fireworks and he still won’t put on his shoes…so he misses out.

My absolute favourite is when–after an hour or more of this negotiation, deal brokering, visual scheduling and every trick up my sleeve to leave the house–we get to the countdown and is misses out.

Then he says, ‘Mummy, I want to go to the [circus on horseback dipped in chocolate rolled in fireworks]’.

So, I say, ‘No worries, put your shoes on and we can go.’

‘Ok mummy!’ He says like I am suggesting this for the first time, puts his shoes on and jumps in the car…

**Aaaarggghhhhhhh!!!!!!!!!** I think to myself.

‘Good job buddy’, I say to him.

7. What else is going on?

I nearly didn’t post this ‘Part 2’ because, although I thought I had some handy tips, nothing…and I mean nothing!…has been working for the last couple of weeks. It took me a while to realise that he is not coping too well with being on holidays. He has no routine, no structure, his usual activities have all stopped for the year and he is drifting aimlessly a bit. I have been really frustrated because now is the time when we get time to go and fun stuff that we don’t always get time to do, like museums and visiting friends, but for him, this puts him out to sea a bit. Sometimes I just have recognise that while I have (in my mind) an amazing day planned with activities or fun, he might just want to stay at home and make his own puppet show out of two sticks in the garden because it is familiar and comfortable.

As I said in my last post. Wade’s stubbornness can be both beautifully illuminating and incredibly frustrating for me. On the one hand I understand that the important things to me and the rest of the world are not necessarily important to him. That he experiences the world differently. I understand that often he can see through pointless rules and ridiculous requests. But on the other hand, there are things we still need to get done and he needs to do them on his own. There are things he needs to learn to stay safe and to join in with other groups of people. And finally, even though I recognise that he is entitled to walk to the beat of his own drum, he doesn’t get a free pass to behave however he likes whenever he likes. We both need to do a bit of work and meet each other in the middle.

So, I hope some of these ideas are helpful and I am happy to hear about other people’s ideas to add to my arsenal.

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An Unexpected Motherhood – the story of a woman with Down syndrome who has a child of her own

*This story was originally published in Voice The Journal of Down Syndrome Australia, Issue 1 2016 and republished with permission. I am the author of the original article* Times are changing rapidly for people with Down syndrome as every year more … Continue reading

For Nicholas Love

Many years ago I met a friend’s little girl for the first time. I’d say she was about 9-12 months old. Cute was an understatement but there was more than that.  She was very present. I held her in my arms and felt an overwhelming sense of peace. She reached out and touched my face and explored its features. She was calm and contented. I said to myself — I want to order a baby just like this. She didn’t have Down syndrome, I didn’t know anyone with Down syndrome at that stage. I was years away from having a child but in that moment, I felt taken over by a feeling that I didn’t understand at the time but I am very familiar with now. I thought it was the cute baby that affected me…but I now know there was something else.

I read a lot of different views about disability and difference.  Some of them I agree with some of them I don’t. Over the past few years I have certainly come to the realisation that our kids are just themselves, not angels sent from heaven or burdens on the world or anything in between. They just have extra genetic material causing some characteristics that many share and some medical conditions that affect some more than others.
Logically I know this.  My reasonable, rational mind thinks about this and knows it to be true….

 
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…but every now and then I am caught off guard by that something I can’t quite put my finger on.  The advocate in me says it can’t be true. Our kids aren’t miraculous or unicorns personified. They aren’t sent here by a higher being to transform us mere mortals into exceptional versions of ourselves.

…and yet there is still that thing I can’t quite align with my rational mind.

There is something. It’s there fluttering away quietly in the deep recesses of my heart.  It’s the feeling of breath leaving my lungs with joy. I have tried so hard to explain it over the years and I can’t. It’s a purity, a soundness, a deep rooted sense of connection I have with Wade. He sees me and gets me.

This is obvious though. I am his mother. I grew his tiny human form inside my human form and it’s obvious that we share some deep physical and emotional ties that linger long after the cord is cut…like any mother and child.

But…I see it with others too.  Wade has a light that people don’t know they are looking at. Like a black light lamp that can only be seen at certain frequencies, people are drawn to him without really knowing why.
Early on I was sure it was only because he had a disability and everyone was just kind enough to be !!!SUPER NICE!!! to me because obviously I would need some extra ‘big ups’ to get through my day….(sarcasm font) but as time passes I know there is something more than that.  They are seeing his light and are drawn inexplicably.

Over time I have learnt to accept it and not try to find an answer for it. He has something…something precious and different and captivating.
I know this because now I am caught breathless when I see the same ‘whatever it is’ in other children too.  My heart literally swells when I see it in their eyes.

When I was pregnant I saw a photo of a young boy around 4 or 5 years old in a book of stories from other parents in the Down syndrome world. The book had photos of many children who were all beautiful and charming but when I looked at this particular photo, my chest tightened and tears began to run down my face.

I hadn’t met Wade yet. I didn’t know he would have the same blonde hair, the same eyes and the same look. That…something.  The peace, the contentment, the feeling that life just is. The look that says ‘Hi. I’m here… that is all.’

Beyond that look is his smile. A whole body, whole spirit, shine of joy that melts you with one look. A cheeky grin that tells me that no matter how naughty he is trying to be, his nature just won’t let him step into the realm of actual bad behaviour. He might try it on but I know he has to work really hard to cause actual grief and harm to someone. It’s just not a part of him.

…and then there is Nicholas…

 

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Photo from mumma-love.com

A few days after I started this blog, I received a comment from Annie Love over at Mummalove.  My pregnancy story reminded her strongly of her mental journey through a Down syndrome diagnosis. I checked out her blog and there was Nicholas…with that look. Our boys are the same age, the same blonde hair although Nicholas’ is a number of shades more brilliant blonde. The same blue eyes…the same look. I knew just by looking at his photo that Annie would be experiencing the same stop-start motion I did every time I went shopping, with people smiling and saying hi. I knew that Nicholas would be drawing the world in with one flash of that infectious smile. I knew that people would be loving him and wanting to be near to him without really knowing why.
I knew how Annie would feel as she accompanied her boy out into the world; as though you carry a flame at the end of your hands and the moths draw in one by one and jostle to be near to the light.
I don’t know if it’s the extra chromosome or not but I know a bright shiny light when I see one and Nicholas has it.

When Nicholas fell ill a few weeks ago, I couldn’t really wrap my head around it…so he will just spend a few days in hospital and then he will be home…right?
As the days moved in to weeks I tried to imagine his light dimmed and smothered by a rampaging infection.  I just couldn’t believe it. Yet those dark clouds marched on, wrapped themselves tightly around that light and took it from the world.
Waking on the Monday to hear of his passing took the floor from under me. I sobbed freely.
“Oo ok mummy?”, came Wade’s sweet voice from beside me and I sobbed again.  I tried to explain why I was crying and he reached out and squeezed my hands.

Some people have a light that spills from them. It bridges the gap between souls and lights a path that not everyone gets to see. It’s not necessarily a Down syndrome thing but I see it a lot in our community. I see an uncluttered unfiltered light reflected on the faces of those who are lucky enough to really see it.

Nicholas your light was so bright, it made your beautiful family shine. It shone beyond your home and out into the world warming the faces of those who followed the measured and calm words of your mum Annie.
It was so bright it lingers after you have gone and stays with us in the hearts and memories of those who held you dear.

In a world like this, we need more lights like yours. Not less. It’s not fair that you are gone but I am grateful you were here. I have some idea of how your mum felt having you in her life but no idea what it must be like without you.

My heart breaks for you Annie but you made a beautiful light for the world who will always be a part of you and your family.

All my love

Leticia

Click here for the beautiful tribute to Nicholas’ life.

 

Passing the Baton on…the importance of sharing the lived experience of raising a child with Down syndrome

This week, as I was scrolling through my newsfeed on Facebook I noticed a screen shot posted by a friend of mine in America. His name is John and he is dad to the very adorable Owen, who has the coolest flop of wavy hair and also happens to have Down syndrome. After I read this screen shot, I was taken over by a moment of lovely clarity and enormous pride. My mind was cast back to when I first met John online and the enormous impact he had on me when he got in touch.

John and Owen - photo provided by John

John and Owen – photo provided by John

I started this blog back in March 2013. Wade was 14 months old and I was just starting to find my way in this new world.
Having an unconfirmed prenatal diagnosis for Down syndrome meant 9 months of complete unknown. Life consisted of percentage chances of this or that and a long list of maybes that may or may not be relevant.
I remember being consumed by wanting to know what my future would look like. On the whole I was comfortable with the idea of raising a child with Down syndrome but it was a process to go through all the ifs, buts and maybes about what that would entail. Some days were easier than others and some days were harder but when I looked at the roller coaster of emotions I had been on during my pregnancy, I realised that I had come out the other side relatively unscathed and with a positive outlook for my future.
I was probably a bit naive to some of the challenges ahead of me but once I met Wade, I knew I had been through an experience that you could only understand once you had done it yourself.

Once I came out the other side, I wanted to pass that information along so that other people might find a story they could connect to as well. While I expected that family and friends would be curious and want to know a bit more about my story, I was really hoping to reach other parents who had received a prenatal diagnosis like me and were looking for a story they could relate to.
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How do children learn about difference?

I want to tell you a funny story about what happens when two kids who are incredibly advanced for their age interact with a kid who is developmentally delayed. I want to tell you this story because,

A) it was absolutely hilarious.
B) it’s a story of what happens when competition, ego and status don’t influence relationships.

First a little bit of background.

My sister and I are an interesting pair. Basically we are the same person but we couldn’t be more different. What I mean is, at our core, we hold the same values, same ethics and same outlook on life but we have always been a bit opposite in how we ended up there.

Growing up we fought like cat and dog. Only 18 months apart in age I was never quite older enough to assert full dominance of my superior age all over her and we were fiercely competitive in every mundane aspect of our lives. Who got to sit in front seat of the car, who got to push the trolley, who did our parents love more….(yes, I actually asked them that once)

I was the one who found school work easy and didn’t have to try too hard to get good marks whereas Sammy found it more difficult. Yet, she was the one who had a million friends by lunchtime and I was still working out how to keep the two or three I’d had for years.

She was short, blonde haired, blue-eyed and adorable and I was tall, lanky, and well….I guess my neighbour summed it up when she said to us...”Sammy will always be pretty, but one day, you will be beautiful”.

Thanks…
I think?

(I spent many years wondering if that “one day” had arrived yet!)

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We didn’t become friends until I moved out of home. As we moved into our separate lives as adults, married and became parents, we became incredibly close. Basically…we grew up…and now we understand who the other one is. I don’t talk to anyone like I talk to Sammy, both in a good way and a bad way! We still drive each other batshit crazy in the way we do things but deep down there is respect and an unbreakable bond.

She often gets the faltering voice on the end of the line saying “Have you got a minute to talk?” And I also answer the phone to hear “I just need to vent!” She is the one who tells me to get a grip when I’m losing rational thought and acting like a crazy person and I am the one who tells her that yes…on this particular occasion, I think you were wrong and you might need to suck it up.
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Because not doing it is harder.

My thoughts and emotions have been spiralling all over the place today. Today I read that an Australian couple chose to use a Thai surrogate to birth their baby conceived during IVF.  The surrogate was actually carrying twins, a boy and a girl and four months into the pregnancy, it was discovered that the baby boy had Down syndrome.  The Australian couple asked the surrogate to terminate the pregnancy but she refused.  After the twins were born the couple took the girl home to Australia leaving the boy behind with the surrogate.

Compounding the whole situation is the fact that the baby has a congenital heart defect.  Around half of all babies born with Down syndrome have a heart defect.  It is quite common and, in Australia, it is quite easy to fix.  The surgery, while major, is considered routine here with extremely good outcomes. 
In Thailand however, this surrogate is unable to afford the operation. A vulnerable woman tempted by a dodgy surrogate agent to make some money to pay off debt, is now left with a child that is not hers, a child she had no plan to raise without the resources to provide for him.  Without the operation, the baby will most likely die.  
There are so many horrendous issues surrounding this story not least of which is the practice of using impoverished and exploited women to birth a baby on the cheap… 
Telling the surrogate to abort the “unwanted” baby against her own religious and moral beliefs…
A dodgy surrogate agent refusing to pay the surrogate for the baby the couple didn’t take home…
The list of aspects to this story that breaks my heart goes on and on but the one part of this shitstorm that hits me the hardest is this…
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What’s the point of personal stories?

A couple of weeks ago I asked the question whether posting my story online is useful to my readers or just mere entertainment. I asked it for a couple of reasons, not least being that I had seen another blogger do something similar and I thought it would be a really interesting exercise. I was curious to see what my readers are taking away with them and if the reality of their experience differs greatly from my expectation. I was particularly interested in inviting readers from outside the disability world to contribute and see if my story has an impact on those with little to no experience of Down syndrome.

I already suspected that publishing personal stories does have a positive impact on the people who read them (or else I wouldn’t publish mine!) but it was interesting to read why from other people’s perspective. I was thrilled to receive comments from a wide range of perspectives. You can read the comments at the bottom of the post here. https://embracingwade.wordpress.com/2014/06/24/is-my-story-just-a-story-or-is-it-useful/

A common thread that came through the responses was about finding stories that speak to us. A personal story can move us in a way that facts and figures just can’t.
We can read all the stats we like about improved quality of life and health outcomes for people with Down syndrome or how encouraging meaningful work options makes good economic sense for everyone but nothing gets a message across like reading about the reality of a situation through the eyes of someone who is living it. No matter how different our lives may feel, reading a personal story can make us find common ground we didn’t think existed but it can also help rationalise overwhelming thoughts when we read about others walking the same path as us. Continue reading

Behave…everyone is looking at you.

I was in the supermarket the other day and I saw a woman up ahead with a child in the trolley. The child was about 2yo and was crying.

Look around…” the mother said, “… you’re the only one crying here…

I am not judging this woman. I understand that there is often A LOT going on in the lives of others that bubbles up to the surface and comes out as frustration when someone is at the end of their tether….

….it’s just that I hear this kind of thing a lot.

It takes many shapes and forms;

“Behave!, everyone is looking at you”
“Don’t do that, you’re embarrassing me”
“Don’t wear that, it will make you look fat/skinny/daggy/whatever….”
“None of the other kids are being as naughty as you”

It always gets me thinking…. People are often terrified of what complete strangers think of them. It is so common for parents feel embarrassed by their kid’s behaviour in public or use the spectre of public humiliation to encourage better behaviour from their kids. Whenever I hear something like this, I find myself asking the question…. Continue reading