Mini pedestal?

I’m emotionally spent trying to keep up with the flood of videos in my timelines. They all proclaim to highlight positive stories of kids and adults with Down syndrome like here’s a video of a kid with Down syndrome playing the violin!Here’s one who has just been crowned prom queen!Here’s one eating a sandwich!!!!Ok so I may have made the last one up. I get what they are trying to do-for so long people with Down syndrome were given no chance whatsoever, they were given up on at birth and shut away from society. I understand that by celebrating their achievements, we are helping to change perceptions of what they are capable of. I just wonder are we always doing the right thing?

I used to take part in a weekly linky where new milestones were celebrated.It’s a lovely idea and one that’s full of positivity but some weeks I would be struggling to come up with some new skill/task that Mini had mastered. I would feel deflated, as if I had failed her by not providing a stimulating enough environment for her to flourish in and acquire a new skill. I also felt as though she had somehow failed me. It was an awful feeling.

This feeds into something I have been struggling with for all of Mini’s life and something that on the outside must look like I’ve dealt with completely but up until recently (far too recently I am afraid to admit) I have not truly been happy that Mini has Down syndrome.
I’ve always tried to show it in a positive light and regular readers have commended me on it,but in truth I’ve felt a bit of a fraud accepting such plaudits. Some people think Down syndrome is what makes Mini who she is and they’re right to an extent. But it’s not all of what she is.There are those other 46 chromosomes hard at work making her a truly unique individual. At times I thought they were trapped in constant battle with the rogue 47th one.Like when I would see Mini struggle to pick up a crayon or a marker, failing to implement that pincer movement that comes so naturally to other toddlers.Or how she would ask me something and I wouldn’t have the faintest notion as to what she was requesting. She would become frustrated and I would wish that 47th chromosome would somehow detach itself from its cellular home and evaporate leaving behind clarity and understanding.
So sometimes, I wished for my little girl minus the Down syndrome. And when she would finally master a new skill, I would think the 46 chromosomes had triumphed over that rogue 47th one. A lot of that had to do with comparing myself to others.An absolutely futile action I know but I just couldn’t help myself.

It’s taken such a long time for me to accept the “Mini” pace of things but once I did I never looked back. I don’t feel the need now to make a big song and dance over Mini’s latest achievement. Mini will learn when Mini wants to and when she’s ready. Is that such a bad thing? Why should we, as parents of children with special needs feel the urge to celebrate every single accomplishment of theirs?In doing so, I fear I will always put Mini down subconsciously. It’s like we’re putting these kids down in order to raise them up, something I don’t think helps anyone-not the people who are trying so hard to be accepted into society or the people on the other end who are welcoming them without judgement. The point I’m trying to make is that by making such a big deal about things that are within the normal ability parameters of kids without Down syndrome,we make the gulf between them all the greater and I don’t think that’s right.

What do you think?


0 thoughts on “Mini pedestal?

  1. Wow this was a great post. You really got your point across. Honest and articulate. As a mother of four, with not a Down Syndrome child in sight, I understand your post, because some of our children also have a little something which stops them reaching their potential, it may be anxiety, shyness, dyslexia, depression, but definitely something.
    And like your Mini, they will find their way, eventually
    As the mother of older children I read posts of younger mothers and I usually think, ‘Sure what’s the rush’. I don’t think any differently about your mini, but I do know she needs a bit more of your time to get her there. ( where ever ‘there’ is)

  2. I was invited to take part in the same linky and I can’t because these days my daughter rarely makes new milestones. Just looking for them reminds me of all the progress she hasn’t made. At the same time I agree that making a huge celebration out of milestones in special needs children that we take for granted in other children is a double edged sword. On the one hand we’re telling the world everything that our kids can do — and as I’m sure you know most people underestimate that, but on the other I agree that we’re widening the gulf too. Very thoughtful post x

    1. That’s exactly what it is-a double edged sword. I find it hard to strike the balance between celebrating our kids and “normalising” their achievements

  3. I meant to comment on this great post last night Aedin but I think I was really really stumped for something to say that isn’t either patronising or simply bleurrrrgh.
    Most simply I’ll say this. There will be obstacles for all our children – whether they are developmental, intellectual, physical, mental or heck even personality based. I don’t know what they are for my three but you can be absolutely certain they are there.
    Like you I’ll want to fix any problem heal it, make it go away, and like you I won’t be able to. And then, like you, I’ll go back about my business helping my little people be who they want to be inspite if it.
    Sure what the feck else can we do?

  4. Aedin, I love reading your blog, you constantly challenge and make me reevaluate the way I think. like in this post. Like Helen, I’m struggling to not sound patronising but I wanted to send you lots of positive thoughts 🙂

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