Stubbornness and Down syndrome Part 1: Learning to see eye-to-eye.

Wade has many features that I adore. His aquamarine blue eyes. The way he screws up one eye while he thinks. His near-perfect comic timing. There is one characteristic however, that has me beating my head against a brick wall seven times before breakfast. This kid is stubborn…so, so stubborn. But as frustrating as it is trying to negotiate with him, I have come to find it really fascinating and it gives me an amazing view on how he sees the world.

I’ve spoken before about how Wade just is. I’ve spoken before how much I love his unfiltered straight-forward view of the world. But that is also part of what makes him so stubborn. Now, when Wade doesn’t want to do something, he just simply won’t do it. Usually there are no tears, no tantrums or anger. Just a flat-out unbudging refusal…often teamed with a move known as the ‘flop and drop’.

This is because:

His idea is the only idea.

My ideas are bad ideas.

My ideas only become good ideas when he thinks they are his ideas.

Wait a minute…this might be because he is male…

To shift him from this view, I have to come up with a deal that will convince him that my next idea is better than the one he has now or the consequence of not doing it will make him worse off.  I am quietly in awe of the simplicity of it but fiddle dee dee if it doesn’t drive me batshit crazy at the same time.

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I’m no pushover when it comes to Wade. I will not back down on something if he needs to do it but the ball is firmly in my court to come up with the code that will crack the impasse…and that code changes daily or even hourly. Whatever worked-a-treat one day has no guarantee of working tomorrow or even ever again. This locking of horns between Wade and I (a stubborn old Taurean) means we can have a stand-off over getting dressed that can last an hour. I can make it easier if I give him lots of warnings about what he needs to do or some visual cues of what I am asking of him but mostly, if it’s my idea, it’s a bad idea. I can negotiate, yell, cajole, bribe, and reason with him but until he thinks it’s a good deal, he won’t budge.

There is a lot to learn from this world view and it’s one of the things I love about him. He is not driven by the things that drive other kids. He doesn’t want something just because another kid has it. He doesn’t show off to get attention or feel the need to be the biggest and the best in the room. He doesn’t care what people think of him while he is lying on the floor refusing to move. These are really fabulous traits that I hope he gets to keep but the trade-off for some of that is he doesn’t realise how much his actions can impact on those around him. Being 100% sure of yourself and what you want is awesome but he also needs to learn how to understand the needs of others and that the world doesn’t revolve around him…actually. It’s also going to be pretty important if he wants to have and keep friends too.

I’ve been reassured many times that this is very appropriate behaviour for a five-year-old just about to enter school. This may well be true–please let it be true–but I have also spoken to others who describe this type of stubbornness persisting well into adulthood as well. So, while I wait to see if it is a phase he might grow out of, I am also watching it to understand more about how he sees the world and why he does the things he does.

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I started understanding this more while I watched the ridiculous process of ‘standardised testing’ for school assessments. Wade is starting school next year and for most of this year we have been involved in the process of getting him school-ready. Part of this is having assessments done to work out the level of funding he will be eligible for to get the assistance he will need to access mainstream schooling. Don’t get me started on the myriad of ways this has been stressful, heart breaking and a mountain-sized pile of bullshit. But if I learned nothing else from this horrible process, at least I got to see how beautifully different he is when forced to try and ‘pass for normal’. Standardised testing is when someone in a suit and tie pulls a measure of ‘normal’ out of a dark and musty orifice and uses that to determine how much a kid like Wade falls short. Then Wade is given a numerical value based on how crappily he compares to ‘normal’ kids which somehow represents a monetary amount for the help he needs to go to school (to then only receive a fraction of the help actually needed anyway. Like I said–don’t get me started).

This process can be the undoing of a lot of parents. There is a raft of tests that we have to subject our kids to then submit reports in gory detail of all the ways our kids fail to stack up. I consider myself to be pretty stoic in the face of this stuff. I understand that it’s a process and we have to just knuckle down and get it done to access the support that will give Wade the same opportunities as those that the world considers ‘normal’. But there was more than one time I found myself ugly crying knowing that, with a bit of extra help, my child can achieve a lot… but the price of it is a pound of my own flesh dragged out of me as it clings to my insides by the fingernails.

One of these tests is for his fine motor skills. The object of this test is to see how quickly the child can thread plastic cubes onto a length of string. The child is given a set of yellow plastic cubes that have a hole through the centre of them and a red piece of shoelace string with a ball on the end to stop the cubes from coming off the other end. Now, the object of the task is to pick up a cube in a pincer hold with one hand, hold the shoelace in the other hand, then–using proper hand control and hand-eye coordination–thread the cube on to the string, moving on quickly to the next one. The tester places all the cubes out on the table, tells the child what the object of the activity is, then starts the timer.

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Did I mention that Wade cares not a jot about how long it takes him to do things?   There is absolutely no reason for him to do this as quickly as possible. I sat back and enjoyed watching his mind figure out this activity. He saw the cubes laid out on the table and chose all of the cubes that had the hole facing upward.  He took the string and pushed it into the hole, tipped the cube over onto its side, peeked around the other side to see it come out the end, then threaded it onto the string. He moved to the next one with the hole facing upward and did the same thing. After two or three cubes he started to make sure that all the cubes on the string were perfectly lined up as they rested on the table (because that looks better!) before he moved it towards the next block. As he moved the string,  the cubes moved out of alignment so he stopped and straightened them up again. Once he had done all the cubes that had the hole facing upwards, then he picked up the ones that had the hole facing sideways. He threaded one of these on to the string and then set about perfectly aligning all the cubes on the string again into a beautiful, visually appealing line of cubes before choosing another one. All while singing a song and flirting with his OT… Meanwhile the timer ticked away along with all hope of completing the mountain of other activities that made up this complete waste of time test. It was methodical, it was musical, it was beautiful…but it was wrong.

Result? FAIL.

In another activity he was presented with a group of red or white cubes. The examiner made a pattern out of four cubes and Wade was meant to copy that pattern with matching cubes. I could almost hear Wade’s mind processing that instruction…

‘Why would I do that? The last time I played with something like this, my grandad built these blocks into a big tower and we knocked them over and had fits of giggles because it was fun. It makes more sense to do that. We are going to do that.’

…so he did.

Result? FAIL.

In this example, I could see instantly what he was thinking when an unfamiliar person in an unfamiliar room asks him to do an unfamiliar activity with no beneficial outcome to him. And to his credit…I would probably rather build towers (or turn the overhead fan on and off, or tuck all the soft toys into bed under the rug) instead of doing the other activities he was asked to do that day too!

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The key to cracking the code of Wade’s stubbornness often comes from trying  to see the world as he sees it. He seeks out patterns that are familiar and predictable during times when the world makes no sense to him or based on things that have made sense in the past. But also I believe the world DOES makes sense to him most of the time. HIM–not me or the rest of us–HIM. He sees our rules and patterns and requests and thinks, ‘yeah…nah…I’m going to do it this way instead’. Unfortunately for anyone other than his nearest and dearest, cracking the code involves a level of mind reading that isn’t found in many mere mortals because he also doesn’t feel it necessary to articulate what he wants and why…just flop and drop. After being asked to complete silly activities in silly ways, I understood more that he sees our world as silly and the things he is expected to do are pointless to him. While I still want to raise a child who is respectful, well behaved and mindful of other’s needs, I have to ask myself…are us 46ers sure we have the world figured out so well that we get to decide what is normal? I doubt it.

So, while I love the mental yoga I need to do to understand Wade and while I sit in wonderment at the quirky, one-of-a-kind way he works out this crazy world…maybe one day we might get out of the house in under an hour because my idea was the good idea for once!

 

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5 thoughts on “Stubbornness and Down syndrome Part 1: Learning to see eye-to-eye.

  1. Someone told me once that people with Down Syndrome have two speeds; Slow and Slower. I have to double the time I allow for any new task for my grandson Nic. He is 21. He has a lot of opinions about what is right and what he wants to wear. He never did the stop and drop but his mom did. She also had DS. She did it well into her preteen years. It was so embarrassing and frustrating. Especially because it was unpredictable and could happen anywhere. In public, at school, at home…OMG the memories are so fresh. In addition I had two other younger children, one was 8 years younger and the other 4 years younger. So if we were out all together, which was common, and my daughter decided to stop and drop I was left to manage all three children and somehow get to the next step of what ever we were trying to do. During this time I began consultations with a behaviorist. His advise was stop and leave. Ignore the onlookers gasps and go home. Refrain from showing any negative emotion. Any attention for the behavior is positive. I had to practice this demeanor over and over and it was excruciating, but it did work. My daughter is still stubborn and often sucks me into this or that drama because she won’t change her point of view. But for the most part she has learned to self monitor. I must say that because she always attended programs with her “normal” peers she learned many age appropriate social skills and many age appropriate behaviors that children do to get their way. In the end her stubbornness can also be called perseverance. I think she would not have become the woman she is if she didn’t have this quality. She is 51 now and works at a local food store. Her son is a student and an actor. Both have perseverance.

    • Thanks Patti! I think that perseverance is definitely part of it. It’s not embarrassing to Wade because it’s only my problem. He doesn’t see sitting in the floor ass problem in his world. It’s only a problem in my world.’ So it makes sense to ignore it to a point because getting angry or embarrassed makes no sense to him.
      Most of the stop and drop behaviour is at home though for us!

  2. Pingback: Stubbornness Part 2: practical tips (maybe) | Embracing Wade

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