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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I’m not going to force him to be nice to people….and there’s a reason for that.

(A big thanks to Nykie of Mistral Photography for these beautiful photos of Wade!)

Recently Wade’s communication has been really taking off, and with it has come a new sense of independence and knowledge about what he likes and doesn’t like. He is more opinionated and his sense of humour is really coming alive! Now that there is a bit of to and fro to our conversations, it’s like he has more ownership in a conversation which is beautiful to watch.

We had a wonderful exchange this morning after he turned on the telly with the remote. It came on to a kids channel showing “Play School”. Wade loves pushing buttons so even though he is watching the show he likes or listening to a song he loves, he will still push buttons to turn it off or change the channel. He played with the remote and the channel changed so he came over to me, handed me the remote, pointed to the telly and said, “School”.
“You want me to put Play School back on?”
“Yeah”

This sounds like nothing but these kinds of exchanges are so remarkable when you think about it. A few months ago, he was just starting to speak, now he is not just copying what I say to him, he is using his words to initiate a conversation and get across how he feels about something. He has gone from the odd word here and there to hundreds of words, relentless attempts to copy full sentences, speaking in two and three word sentences and being so much clearer that people other than his nearest and dearest can actually understand what he is saying (or at least trying to say).

Photo by Nykie Grove-Eades of Mistral Photography

Photo by Nykie Grove-Eades of Mistral Photography

One “fun” aspect of his slowly developing language is the realisation that all those swear words I drop carelessly a into conversation have been softly landing in his memory bank. I discovered this through a recent bout of road rage as I heard coming from the back seat “Ah…SHT”. Now, this is a remarkable achievement for him and I should be celebrating because after three years of teaching him the word “Sheep”, we are no closer to him saying it. I have shown him flash cards, innumerable repeats of “Where is the Green Sheep”, soft toys, songs…all sheep related, all with me repeating the word “sheep” over and over but every time I say “What’s this?” I am told “Baaaaa”
Continue reading

The first light of speech

I’m trying something new with this post. Click the links to see some videos posted on the Facebook page that go with this story

Watching Wade develop is a bit like watching the sun rise. If I sit and watch the sky, I can’t really tell if its getting lighter. Minutes tick by and the world seems pretty much as it was and then all of a sudden I can see it. The sky is different. It’s changing even though I’ve been here the whole time.

Something has shifted in him recently. His speech is starting to take shape and his ability to communicate is coming along. It’s been a long time coming and it has made me doubt myself on more than one occasion. Sometimes it feels as though months have gone by without anything new happening and then all of a sudden I catch myself and say… “When did he start doing that?”

I’d love to know what it is that spurs him on to the next stage. I have a theory about him only being able to work on one thing at a time. (The jury is still out on whether this is a Down syndrome thing or a male thing!). But once he masters one new thing, he very quickly learns two or three more.

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I shouldn’t be so impatient but as I start to see the gradual changes that are inching him closer to full language, I am getting excited about the conversations we might have. Earlier today I tried to put him down for a nap but he obviously had something on his mind. Continue reading

Milestone Rehab

It’s been two months since I wrote Milestone Junkie, about my lack of patience when it comes to working on new milestones with Wade. In it, I wrote about how Wade learns some skills quickly and others take ages and how keeping a sane rational mind about it seems to be harder for me to learn than for him to walk!

Well, my little guy has been royally spoiling me these last two months. The day I described, when he learnt to clap has been a springboard for his communication, confidence and personality. (Not that he needed a boost in personality but the cuteness level has now gone into overdrive…).

The timing of these new milestones and a big surge in his comprehension of the world around him couldn’t have come at a better time. Recently I’ve been feeling a bit frustrated with his developmental delay. Rationally, I get it. I understand all the hows and whys surrounding it. I know he will learn and do new things but lately I’ve been getting impatient. Maybe it’s the winter blues, when getting out of the house and doing things seems too much like hard work…rugging up in 20 layers of clothes, taking hats and umbrellas and staring at the radar to see whether you are going to get caught in a downpour as you venture out of the house. I know we have both been a bit bored around the house and I consider taking him to a play centre or a park with play equipment and then it hits me… Continue reading