A perspective on the world of disability from a mother and an educator. Follow my blog!

Monday, 16 June 2014

A beautiful anniversary.

We've had a few beautiful anniversaries to celebrate of late. Today is another. Today I celebrate my 8 years in Holland. It's been a study tour. I came as a tourist & became a foreign student. I've studied earnestly and learnt more than I could imagine.

Those who know my big girl see the world through her eyes- selflessly, naively, without limitations. After my last blog on hugging, Miss I gave a random hug to a mum in the carpark at school pick up. The mum then sent me a text telling me how awful her day had been and how that one act of kindness brightened her day. This is the way she lights up the world, and how she has taught me to be the same.

She has taught me & many others gratitude. Pure gratitude for the simple things in life. When you see how much harder she has to work just to achieve the same as her peers, it demands respect. She has earned that respect and we are all grateful.

I've never been the sort of person to stand by while injustice occurs, but she has truly given me a focus & direction in my life. She introduced me to my calling and I've been able to help so many others because of what she has taught me.

I was having a wonderful theological discussion with a friend last week when she expressed the stereotype of 'children with DS have such happy dispositions'. I was told that so many times just after she was born that I took photos of her crying just to prove that she was the same as every other baby.

That really does sum up what the last 8 years have been -people having expectations & Miss I smashing them. Milestones, growth charts, personality, academic ability - there have always been people who have stereotyped. While Miss I marches to the beat of her own drum and not to a generalisation, I have fought the good fight, for her, always for her, always in her name. Just to give her and others marginalised like her, the same as 'typical' children.

I know a beautiful mother in the US who contributes so much to her community and has brought so much to the lives of children with DS (like her daughter). She too is made to feel like she still has to fight for basic rights for her daughter simply because of the expectations and stereotypes others hold. It is an experience shared by many.

Despite all this, the constant uphill battle, the tears of tiredness, the lack of emotional regulation, the hours of take up time required.... The future is bright & full.  There is no need to worry about tomorrow, it can worry about itself! We can conquer whatever comes before us! I know we'll still be here in a year's time triumphing over our struggles for there will undoubtably be struggles. Life is hard at times, but always joyful.

Happy Birthday my darling big girl! Thank you for everything.

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Tuesday, 3 June 2014

Hugs and Kisses X0X0

I started this blog as a way of venting. It forced me to articulate what it was that was causing me grief in a way that was socially appropriate. I have been very grateful for it as an outlet. In recent weeks/months I haven't been writing as much and I think the simple reason why is that we have been receiving blessing upon blessing and the anxieties and worries that came into our life thanks to Down syndrome and a chronic illness seem to have abated.

The healthy living course I have been doing over the past four weeks has been very beneficial. Though at times I have sat there and thought 'but I already do this' or 'I already have that thought pattern', I guess that has served to remind me of the joys in my life and that I'm not such a bad egg after all. The greatest lesson I am taking away is about being in the moment. Forget the regrets of the past, restrain from projecting on the future, just 'be' now.

I read an article the other day from a mother who wanted to teach her child with DS boundaries because she was worried about inappropriate hugging when he gets older. I guess I am coming from a completely different parenting  perspective because I encourage all my girls to hug. From a professional standpoint, I have worked with an adolescent boy who hugged as a greeting. He learnt quickly which teachers and students would reciprocate and who wouldn't. I didn't have a problem with him saying hello with and hug....  and I still don't! I'm not his teacher anymore, but seeing him can easily be the highlight of my day as he hugs hello and proceeds to tell me all about his latest cooking adventure.

Here is why I don't have a problem with it. As an adult I can find social situations, particularly greetings, very difficult. Do you handshake? Do I need to hug? I have one friend of my husband who I know is a cheek kisser. In the past I would never initiate the cheek kiss. I guess I simply didn't know how to. Too many awkward cheek kiss misses. Ughhhh. Awkward greetings, I'm not a fan and they can make me feel ill at ease. They leave the whole social encounter feeling awful.  So, back to this cheek kissing friend. I now know that is his greeting style, so I steel myself and preparing mentally. I lean in, offer my cheek, kiss the air near his cheek and.... we're done! Phew! But he's getting married to a friend of mine.... what will be the protocol on their wedding day? Hug? Cheek kiss? In short, the problem is mine, not his.

Now, someone please tell me why my daughter hugging people is wrong, and why she needs to learn 'boundaries' when this man who wantonly kisses the cheek of all he passes is deemed socially acceptable? In reality, we could all use more hugs, couldn't we? Shouldn't we the receivers change our perceived boundaries?

So, back to being in the moment.

I think that worrying about whether or not my 8 year old's hugging will or will not be the cause of boundaries to be crossed in the future is wasted energy. I think that the mother in the above article who saw the actions of another child and projected them onto her own son is missing the 'now'. Surely if my parenting now is the best it can be, my daughter, DS or not, will be the best she can be, now and in the future.  If I can teach her to find self affirmation, then she won't need to seek it from others. Isn't that a better plan than teaching her not to hug people she meets?

A very dear friend of mine has a blog far superior to my own (plus her photography page). She started her journey of motherhood a couple of years before me and she has taught me more than she could realise. Just today she posted about the fear she goes to bed with every night because of her daughter's T1 diabetes. It really put any worries I currently have for my daughter into perspective and maybe the mother in the above article needs a little of that perspective too. I am grateful for the ease and joy which has descended onto our little family this year.

Worrying about what may or may not be in the future needs to be proportionate to the significance of the thing you are worrying about AND your ability to influence it. My friend has every reason to worry each night. Worrying about how a hug may or may not be reciprocated by someone 10 years from now...