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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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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Comments
  1. davidprosser says:

    Sam sounds like a sweetie but we mustn’t forget the ones who help him reach the milestones with help and encouragement. You’re a Star Yvette.
    xxx Massive Hugs xxx

    Liked by 1 person

  2. I have never met anyone who could tell me what entails to live with someone like Sam. I had no idea. I didn’t understand until I read your article. I had to share. What a beautiful little flower 🙂

    Liked by 1 person

    • yvettecarol says:

      I’m so glad you said that, Sussu. I sat down last night, thinking, what should I write about this week? The first line of the piece came to me. I immediately second guessed it, saying to myself, ‘who are you to talk about Downs’ syndrome?’ ‘Who cares what you, only a parent and not an expert has to say about it?’ Then, I thought, as I’ve learned to say with all forms of writing, esp. fiction, just write it down and let’s go with it, see where it leads. Happily, it led to me finding the right words to express some of my journey. Thank you for confirming it was a good choice. You’ve made my day 🙂

      Like

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