My happy post about leisure activities and “Adaptive sports”

This one I will fill with photos. With Our Normal we have just done some interviews with families about their kids’ leisure activities – so I felt that I wanted to share some photos from what Vanja likes to do as well. As I wrote in my other post it isn’t always easy to find the right types of activities, but I am happy that she has found some things in life that she really likes to do.

To participate in weekly activities has been important for her already from an early age. This since she really likes routines and to know/foresee a bit of the things what will happen. And we have been lucky to find things she really likes to do; like dancing, swimming and gymnastics! Her new biggest interest however is cooking, so that’s something we try to do together at home more and more often.

(The photo of winter sports however, I must admit, doesn’t fully give a true picture. This is still more of a passion from other family members, but she really likes the huge stuffed animals that tend to hang out in kids’ areas of the Swedish ski resorts 🙂 ).

 

Vanja likes to paint

 

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My less happy post about “Adaptive sports”

One of the hardest things for many parents of children with disabilities, and special abilities, is to find the right type of sport / leisure time activities.

This is partly because the range of activities being offered out there is limited. This is especially true if you don’t live in the bigger cities – but even in bigger cities like our there can be long queues to join a class or too little “adaptive activities” to choose between. Here the simple solution would be for the municipalities to take on a bigger responsibility and simply offer MORE.

But another reason is that “adaptations” simply aren’t that easy to do. I experienced this myself the other day together with Vanja. We have recently joined a new swimming school. Vanja, who loves to be in the water, is a bit like a fish already. She dives into the water full of energy and wants to have challenging tasks to do. If she gets bored she starts to dive repetitively and finally swallows too much pool water. That behaviour of hers is completely the opposite from some of the other peers in her class. So how do you plan for such a diverse group if you are a swim teacher?

To teach adaptive sports/adaptive leisure activities, if the clustering of the group is simply “adaptations” in general, must be one of the hardest things you can do. Because to think of everyone’s needs and find a “golden mix” of activities supporting and challenging every individual sure isn’t an easy task. Still I more than once have come across poor planning and preparations in those types of activities. The attitude is a bit that anyone can teach in those groups, like if it would be less serious?!

Yesterday in the swimming pool was one of those occasions when I got really tired of it all. Vanja got bored, started to do her own things and I was expected to stop her.  Because in “adaptive sports” parents take part. We are together with our child in the pool, at the gymnastics, in dance room, at the music session etc etc. Wherever we join an “adaptive” session it is expected that the parents are there participating together with their child. And of course I understand the reason for that; my daughter needs my support. But I am also starting to get tired of being expected to be not only the supporter, but also the teacher/instructor as well.

Sometimes I feel that what I am really jealous of when it comes to “typical” parenting that’s exactly this; that they don’t need to be anything else but parents. That they aren’t expected to be supporters/assistants during every single activity and to also be the “on field instructor” because the real instructor’s adaptations don’t fit for their child.

I realize that it is a difficult equation to solve. But I dream of that time in the future when we finally, hopefully, find the right activity, with the right type of adaptations, the right engagement from the instructor and the right attitude from everyone around so that I can be ONLY a parent. Then I happily would sell socks, bake cookies, engage in the association’s board committee and everything else other parents do!

The launch of the Our Normal shop!

I got really quiet for some time. Simply because I was so busy with the launch of Our Normal shop! And it was so much fun – we launched it to support the big Swedish campaign ”Musikhjälpen” this year focusing on Disability rights and Inclusion.

I let the photos do the talk. Emma Jutemar (@nordlyckan on Instagram – check out her beautiful account) did an amazing job with all the photos!

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)…

”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! : ) ).

A life ”like a Spanish movie”

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.