For us ”accessibility” sometimes would be a high fence

The other day it happened; Vanja ran away from school.

Thankfully, she was found short after – she had crossed the building and taken the elevator to another floor. She was never worried herself, but of course the teachers were. As well as me and John when we found out about it.

Already since she was three years old, this has been something I have constantly been worried about; her interest for taking off in all kinds of different settings and surroundings. She clearly wants to explore things and to be more independent than she can handle on her own. Visual or physical boundaries (like in this case three doors, one long corridor and an elevator) won’t stop her.

Before Vanja was born, and before I had met other kids with Down syndrome, I had never given this with runaways a thought. Of course, I know every single parent worries about their 2 or 3-year-old, and that they find it stressful to go with them in a mall or at an amusement park. But in this case it is something totally different. Because our girl, and many other children with Down syndrome in the same age, has an interest for running away or taking off on their own, also way up in age. And this interest, together with the challenges of sometimes understanding the consequences of your own actions, can become quite troublesome.

So for us, as I have written before, a mobile door alarm is one of the most important things that we always carry with us. At home we have a security chain on our door, and we also have bought a gps watch for Vanja, so that we can keep track of her in case she takes off. But since we can’t be around all the time, gps-watches aren’t 100% reliable and we can’t keep her behind locked doors – different types of ”safety tools” are needed in other surroundings too.

I believe that when people hear and think about the word ”accessibility”, they seldom think about a high fence or a door alarm. But for us, that is what true accessibility looks like. If there could be a school in our area with a schoolyard surrounded by a fence, if there were ”closed” playgrounds in the parks of the city centre, places would be a lot more accessible for us.

Just a few weeks ago there was a guy in a Swedish town, a 12-year-old boy born with Down syndrome, who had left his home on his own and didn’t come back. The days that followed the biggest search for a missing person in Sweden ever took place. It was really overwhelming to read about how 3000 persons participated in the search, of course dedicated to find him alive. To receive the tragic news that his life in the end couldn’t be saved, that he had been found drowned in a nearby river, left me totally devastated  and in tears. 
Every parents’ biggest fear.
And we live so close to it all the time.

Of course, to live life means there are risks. For everyone. But we have a society where we are good at preventing risks. We also have a society striving for increased accessibility. And with this post I just want to give some reflections on that word and what it can mean. Accessibility for sure means building inclusive playgrounds and parking lots and getting rid of thresholds in public spaces. But it should also mean creating ”safe zones” for some chronic, very curious and determined explorers. For their safety first and foremost. And also so that their parents (and teachers) can sit down and take a deep breath, at least for a few seconds, to save up some energy before heading into the next ”unsafe area” (which is pretty much everywhere)…

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”I want to live in a world where disability is not the exception, but the norm”

I have seen this Ted Talks by Stella Young before, but came across it again the other day, and just felt the need to share it once more. It is simply brilliant and SO true. And I love her title: ”I am not your inspiration – thank you very much”.

Because of course, people with disabilities are not around to be non-disabled people’s inspiration. I guess most people would agree with that, but still those types of comments are all over internet and social media all the time…

Watch it.

 

Yet another day at the playground…

… and all of a sudden I realize that maybe, before we even know it, those times that have seemed to be never-ending aren’t that never-ending after all.

From now on I promise myself that I will do my best to totally enjoy every single moment at the playground every time!

(I am pretty sure that I usually look more bored at the playgrounds than in those photos…  BUT – not anymore! : ) ).
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A life ”like a Spanish movie”

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There used to be a time in my life when all I wanted was to live more like in a Spanish movie. Like the movies made by Pedro Almodóvar. With drama, emotions, chaos and sensations.

Not because I wanted to live a life exactly like the characters in those movies, but probably because of some kind of longing to feel a wider register of feelings. In a way; to experience more of life I suppose…

When I first discovered his movies in my teens I got totally swept away. I just had to go to Spain!!! (and so I did).

However, this was long before kids. Long before my everyday life experience with emotions like rollercoasters and thunderstorms. With chaos in doses of small cyclones, with rains full of tears and with sunshine purely full of love.

Sometimes I think to myself that I really didn’t have a clue at that time when I was 17 and for the first time said to myself that I wanted my life to be a bit more like a Spanish movie…

Because we are certainly four individuals with a wide register of feelings in this family right now. Working on our patience and trying our best to give each other space. Space for everyone’s different emotions and space so that everyone can explode under the same roof at the same time.

We’re like a mixed box of fireworks. And I think we are contributing quite well to the mix all the fours of us. But Vanja is certainly the most talented one when it comes to fully living out her emotions at every single moment. And it’s a true skill for sure. I am really amazed to see her navigating between all those different types of emotions and reactions. Full of drama. But for real.

So all of a sudden I don’t have to go to Spain at all. It is fully enough to stay at home in the kitchen and try to cook a simple dinner, while one single scene most likely will include the deepest downs and the highest heights within seconds. There is always someone in the house with a mood that needs to explode and be put somewhere outside the body. In forms of tears, slamming in doors, cryouts while lying down on the floor, happy dance moves, high fives, hugs or kisses.

And I love it. ❤ 

But nowadays it also happens that I sometimes think about that pale and dull colors in the movies by Roy Anderson. Calm and boring. Just for a day or two – maybe it could be nice?

Pedro Almodóvar vs Roy Andersson.

Sharing some thoughts in the ”Life-with-kids”-podcast!

This summer I participated in a podcast together with another mum, and the topic was ”Welcome to Holland” – a dialogue about how life change (and doesn’t change) when you become a parent to a child with a disability.

Or special ability, as I also prefer to call it :).

You find the link to the podcast here! (in Swedish)
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https://podtail.com/en/podcast/life-with-kids/080-valkommen-till-holland/

Off to school!

On her way to her first day in the new school! She has been there to visit the teachers two times before, but she doesn’t know any of her classmates in the new class.

She is wearing her new backpack and we take the tram together all the way to the school. As we get near the building she looks at me and says:

The sun is awake. What a great day this is!

Ah, my little sunshine!

So ready for this new step in life.

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(That’s the short and most important story. The longer version is that the mum is really nervous and also a bit stressed about this big change. Therefore, for a few days, she moved her office to the café right across the street from school… haha. )

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