The beauty of the internet

The beauty of the internet

The internet is an opinionated old place. Opinions are thrown about as quick as look at you. If I had to rank where they fit in the scheme of things, I’d put them right up there with funny cat videos and Kardashian news. Maybe more so, as both of those things generate more opinions as well.

Playing in this online world, which I do both in my spare time and for a job, means I’m used to reading a lot of opinions. Ones that see me nodding along, others that make me throw my mobile phone and crack the screen. True story.

Over the years I’ve learned to let most of them wash over me. Ebb and flow, without touching me. Let’s call it self perseveration. Yet despite my best of intentions, my focus on just doing my thing over here in this tiny corner of the web, occasionally something stands out.

Usually it’s because it’s resonated strongly with me. Like this piece, which is, maybe ironically, all about opinions, and how just because you have one, doesn’t make you right. Doesn’t mean your version of the world is the correct one.

Sometimes it’s because challenges my thinking, and not necessarily in an enjoyable way, like this one. Which while not about opinions, is still someone’s opinion. Someone’s opinion on whether it’s ok to share the bad, along with the good, of raising a disabled child. Comparing oversharing to shaming. Stating that she’d like to see less of parents sharing stories of their children online.

It’s probably no surprise that, as a parent, as a blogger, as someone who shares glimpses into our lives on the internet, that this annoyed me. And even though I tried to let it wash over me, let it go, it is just someone’s opinion after all, I just couldn’t.

So after sitting on it for a few days, tossing it around and trying to reconcile it with my own views, I commented on that bloggers Facebook page. Shared my thoughts and offered a differing perspective. And she deleted those comments, before blocking me altogether.

So here my thoughts are. An extended version. On my own little corner of the internet, where I get to share my opinion, rightly or wrongly…

My daughter is the centre of my world, my moon, my stars and my everything in between. Autistic or not. And I wouldn’t change her for anything.

But some days being a parent to a disabled child is fucking hard. Actually, scratch that, some days it’s fucking hard being a parent, full stop. And I’m not going to lie, when we started our family, we never thought we’d be here.

Our journey is very different to the one we had planned, and there is a grieving process that goes along with that. I’m assured by professionals that this is normal. In time we’ve discovered a whole new world through our girl, with our girl, and we’re probably better parents and people as a result.

And I’d suggest that admitting it’s hard publicly demonstrates that it’s ok to say so. That it’s ok to ask for help, to reach out and say you don’t have it all together and you’re overwhelmed. That doing this might make it easier for someone else to do the same.

When Poss gets older, I hope that she knows it’s ok to say something is hard, that she’s scared and needs help. That sometimes she doesn’t have all the answers and that there are people – online or otherwise – who will be there to support her through that, just as they have me.

To hide these things away, to only show the good bits, the shiny happy bits, is bullshit. It’s not real. It’s like a Kardashian Instagram account. Sure it’s fun to look at, but we all know it took a makeup team and a bunch of stylists to create that post.

Instead, I’ve found that the amazing moments in life are so much more, so much richer, when you know how hard won they are.

So I share. I share the hard bits, the meltdowns, the hospital visits, the moments where I feel like I’m doing a terrible job. I share the bits where I have no idea how I’m going to make her world better, how I’ll guide her into being the amazing adult that I know she’ll be.

I share these bits alongside the moments of overwhelming joy and exploding parental pride, as well as the mind-numbing tediousness of the day to day. Because that’s my life. The good, the bad and the boring.

I desperately try to only share my story, not hers. I’m am very aware of speaking for her, and how she has her own voice. But the reality is that so often our stories are completely intertwined, like breathing in and breathing out. One is half of the other. So sometimes the lines get blurred, despite the best of intentions.

Some might call it oversharing. Some days, those fucking hard days when I’m scared out of my mind trying to just get through the day with us both intact, it probably is.

But I’d argue, I will argue, that it’s my call, our call as a family, on where that line between sharing and oversharing is, and not a single other persons.

At some point, Poss and I will probably argue about the things I’ve shared online. So far, she’s accepting, happy even, that this opinionated internet is part of our world. She poses for photos on the good days, and reaches out to others she’s met through my blog on the not so good ones.

I asked her this week “do you think I’m a bad mummy for talking about Autism, specifically your Autism and our family on the internet?” Her response?

“No mummy, you’re the bestest. Together we get to help people when you talk about Autism. Not everybody gets to do that.”

We’ll keep having those conversations; it wasn’t the first and it won’t be the last. But for right now, that’s enough for me.

And if you don’t like it, guess what, it’s just my opinion and you can just click away and find a fun cat video, or write a blog post of your own. That’s the beauty of the internet.

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Comments

  1. Well said!!!
    As an ABA therapist of over 10 years, I’ve seen a lot of families & how they cope..,
    I think you do a fabulous job in all of your roles in life! Good bad & boring!
    Warm regards,
    Marcie

  2. I particularly lile that you put thought into what you write. That your are conscious of the power of your words and (or so it appears) choose how to say what you want to make sure that it serves a purpose. Even jf that purpose is just to have someone know that they need to ring you and tell you that it will be okay.

    I think what you write has so much impact because you dont share everything. I gather thats becuase you would like some modicum of privacy. And it also has the effect of giving people enough of a glimpse into your life that it is impossible to feel fear or pity or irritation. It leaves people open to feeling curious, and empathetic and inspired. Which is a very awesome way to advocate for your daughter in the real world.

  3. Renee, do not underestimate how important your blog is…you speak for those of us on the same side of the fence who are (in my case) much less articulate and far more overwhelmed to put down in words the struggles and joys of having a special child!! I cannot tell you how many of your blogs I read, nodding, crying, laughing…it is so affirming to know that someone else “gets it”. In my opinion (ha), your blogs are so much more authentic and readable because they are from the frontline. Thank you for sharing your story, I love your posts. Kathryn.x

  4. If it wasn’t for you and others writing about autism, it would never have occurred to me to get my son assessed. Or indeed to consider that I might have Asperger’s. As it is, we both do and it’s your blog and others like yours that help me see that we are our kind of normal. That there are other people like us in the world.

    I haven’t written much about my son’s autism, mainly because it doesn’t really affect our lives that much and also because he’s at an age (12) that he doesn’t appreciate me telling everyone what he’s up to, or what difficulties he faces. He doesn’t feel disabled. He has embraced his autism with open arms and it’s given me an understanding of his and my behaviours. It’s just what makes us special.
    Dorothy recently posted..Would you like to Move It, Move It? Giveaway!My Profile

    • Thank you so much for commenting Dorothy and taking the time to share your thoughts. I really appreciate it, and I’m so pleased to hear that my writing, and others, have inspired you, even if it’s just in a small way.
      Renee recently posted..The beauty of the internetMy Profile

  5. It’s crucial that our stories and struggles are not silenced because ‘they might offend someone’. Children do matter. Carers matter too. Pretending everything is dandy and “there’s nothing to see here” helps no-one.

    What you do is create community, amongst a group of people who very much need it and can’t easily find one another. I read your posts and I nod, and I feel kinship. I don’t feel like I’m in this alone. Heck, I feel like you “get” me, even though we’ve never met, and you talk whilst I “like”.

    In order to the be the best parent I can be, I need support, understanding, and community. And you give plenty – thankyou, and keep it coming.

  6. I did read that article and I was REALLY astonished, but mostly very disappointed and sad. I discussed it with my husband at length who felt the same.
    1. I thought she advocated for tolerance and acceptance of people with disabilities. So why single out parents of kids with disabilities?? Why not all parents, disable or not, that share every embarrassing detail of their kids. Or funny home videos!!! I see no difference.
    2. To criticise already vulnerable parents ( ESPECIALLY as someone who doesn’t have kids) is a bloody low blow. I can go ages without seeing the light of day and other PARENTS sharing has kept me going.
    3. To read that your comments were deleted is absolutely appalling. If you feel strongly enough to post about a subject, at least have the backbone to accept debate on the matter. Agree to disagree. That just shows immaturity and a complete lack of respect of others. Or the lack of skills needed to substantiate a debate.
    4. I truly hope that no parent read that and has decided not to post about their kidlets.

    Thank you Renee for opening up your world to so many. I often have read posts where you have not seen eye to eye with a reader and you’ve always dealt with it in a respectful manner. I will continue to share and read many blogs a parents sharing their children’s stories.

  7. I’m so glad you have your space. A very mature and dignified response, Renee.
    Deb @ Bright and Precious recently posted..Bali Part 4 – I Dream of Jimbaran BayMy Profile

  8. Everyone deserves a voice and the opportunity to be able to share their own experiences. If it’s at someone else expense then it’s not quite so simple.
    But…our experiences as parents of kids with a disability COUNT. We are not by-products of disability – we live it each one of the 24 hours in a day. Just as our kids carry around a part of our heart, we carry their challenges with us. No, we don’t have the lived experience of disability (and those voices are incredibly important, of course), we have a different perspective, no less valid. We are advocates, and how we think and plan and care for our kids has an enormous impact on their lives. I’ve learnt so much from other parents, things I would never have even considered if I didn’t read a few (very few) well chosen blogs.
    So thanks for putting your thoughts out there, they help, they count.

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