012 (16)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.

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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.

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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.

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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.

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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.

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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.

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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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Comments
  1. Angela Clarke says:

    Love that so true

    Liked by 1 person

    • yvettecarol says:

      It always matters what other special mums think! Thanks, Angela.
      Another friend had responded the fluctuations are because of hormones, which I feel could be true. But, then I wonder, would hormones have been affecting him since he was a little kid? Because these mood swings have been around for as long as I can remember.

      Like

  2. lynnkelleyauthor says:

    Never a dull moment in your life, Yvette. Sam’s got quite a personality, and that kid can dance! I love those videos of him dancing. I hope he outgrows the uncooperative phases. You are a saint!

    Liked by 1 person

    • yvettecarol says:

      Never a dull moment is about right. Sam is a character and a half and man, he can be a handful. I always used to wonder, how am I going to handle this kid when he’s physically way bigger and stronger than me? I came to find out. One day, last year, he wouldn’t come with me to walk to the taxi for school. He started to walk the other way. I grabbed his hand with both mine, and he literally pulled me, sliding, in my socks all the way down our hall! Sheesh!

      Like

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