Whose blog is it anyway?

There have been a number posts and discussions over the past weeks and months about parents of disabled children and their decision to blog.

Do they invade their children’s privacy?
Do they try to speak for their child?
If their child could communicate somehow would they be happy with what their parent had shared?

Do they – really – have any right to share this much online as who, really, is it benefiting? and, shouldn’t they – we – just be content to parent? I paraphrase that last one, but you could read it that way.

I can only speak for myself.

Blogging has given me the space to think about my – our – life and how – not so much Alex himself – but how much Alex’s disability affects and shapes our lives.

Blogging has allowed me to connect with friends and family, people who don’t live our every day, and enabled me to share with them – you – how our life works. This has been so important to me because I know people don’t like to ask too many questions, but that they wondered how we’d cope, how we’d manage, what the fall-out would be and I wanted to show that it was gradual, that we changed, but that we survived, developed, grew and almost re-formed into a different family unit than that which we’d envisaged but one that functioned and thrived. That we were happy.

Blogging has given me the opportunity to talk to and connect with other parents of children with disabilities. To compare experiences… to let each of us know we weren’t alone and to support one another as we came to terms with our own feelings, with those of the people around us… and also how to deal with the strange behemoth that is The System that tries it’s best to support us and the very particular needs that our children have. And that sometimes that system is slow… as it tries to alleviate some of the pressures that our children’s situations inevitably put upon the rest of the family – however far that extends.

Before the internet… I never would have had those opportunities. I’d have been so incredibly isolated. Here I have you all to support us. And the overwhelming love that comes through to us and to Alex was something I hadn’t anticipated but is so appreciated. I don’t feel like we are walking this road on our own.

I am careful not to share too much. I barely talk about my husband. He is so involved in every aspect of Alex’s care, he advocates for him, is his champion in conversations, but he is a private person, doesn’t like social media, and I respect that. This is not his story. And Emma. Emma is at the centre of my thoughts. Will her peers read this? How will they react? And so I try to be careful not to involve her too much, though she loves to be a part of Alex’s story, always wants to know what I’m writing about and is happy to have her pictures included. And sometimes… what she says is so important because it shapes my thinking as well. Because all children make us think in a different way. Their leftfield approach is invaluable.

And Alex. What would he think?

Here, I can only guess. If one day he can tell me he’s not comfortable I would stop. But in the mean time…

I’d like to think that he knows his Mummy is happier telling our story. That by sharing it she feels a sense of cathartic release that you could see as selfish, but she knows to be overwhelmingly beneficial. By sharing she hopes she has arrested her family’s drift towards isolation… that it has helped people to understand how life is in their home. And how important it is to have people around them. He’ll know that people understand some more about not only their life’s challenges but also it’s happiness too. That by talking to other parents his Mummy has learned so much, has gained in confidence to advocate for him and, therefore, all of his family.

He’ll be glad I don’t talk about poo very much :-)

Ours is only a very small story in a very small part of the blogosphere. But it’s our story. And I’m happy telling it our way.

And if I didn’t share it I’d never be able to show you this video – look at my boy move! (and yes, those are more xmas pyjamas…)

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7 Responses to Whose blog is it anyway?

  1. Mark Devaney says:

    I’m so glad to hear how much you gain from blogging – clearly it’s a very imortant tool for so many reasons.

    And as a worse than poor friend who should pick up the phone way more than he does (i.e. once would be a start!), I for one look forward to reading your blog Helen, and hearing something about how you all are. You write so eloquently and I’m sure Alex is proud of his Mummy. So please carry on. If you don’t, I might just have to call ;-)

    Love to you all
    Mark x

  2. That look of fierce determination,and pride-sports scientists could learn a lot from our children don’t you think?(My other thought was-wow isn’t her white floor clean!)

  3. …exactly my thoughts too pearliejqueen!…plus, I bet you’ve also noticed that the plants get watered at Alex’s house too! Totes jealous :-) Great post, as always…and well done Alex! xx

  4. Pingback: Whose blog is it anyway? | SWAN UK

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