A friend of mine is upset. My friend is a blogger. She is a parent of two children with autism, amongst various other conditions. Today, my friend saw a link, posted on Facebook by a long-standing close friend of hers, pointing to an article, written by a disabled woman, about how parents and parent bloggers are often guilty of oversharing inappropriate details about their children online. This, fairly blatant public slating of my friend’s blogging about her children (and it isn’t the first time the so-called friend has mentioned it) has really stung, not only my friend, but some of us other ‘special needs parent bloggers’.

The writer of the post linked discusses that, although these parents mostly mean well, their writing about the details of their children’s conditions may well be detrimental in the child’s future. She discusses how she would like to see fewer stories about disabled people told by others, but rather the disabled people themselves should tell their own stories and decide what should and should not appear on the internet. She implies that we parents write too much about how our children are burdens, or inspirations, and that this makes her uncomfortable.

Of course, she does make a few valid points. Yes, it’s not a good idea to share absolutely everything about your children and the ins and outs of their conditions; some things do need to remain private – children deserve dignity like anyone else, especially if the child can be identified in any way by others that may know them, now and in the future. Yes, disabled people should be able to use their own voice to tell their own story in the way that they want others to perceive it. If they can. Yes, we need to be very careful about expressing negative feelings and experiences, particularly if other people relating to those can be identified. And yes, once out there on the world wide web, it’s there for all eternity and we must consider the repercussions of this as the child grows and develops their own identity.

However, for this writer to imply that parents should not be writing about their children until they’re of an age to be able to consent to it, denigrates my right as a parent of a disabled child to be a voice for her until such a time as she can advocate for herself.

A meme I made and which has been shared a lot on Facebook, and which I stand by wholeheartedly.

This blog began the day after Tink was diagnosed with autism, when I was feeling confused, worried, doubtful, hopeful, and a multitude of other emotions. I wanted somewhere to let it all out. Surely, that’s my right? Just because it’s my daughter with the condition, it doesn’t make my emotions invalid. Yes, she is directly affected by it, but so am I. So is the rest of my family. And to suggest I can’t share that with the thousands of others out there in a similar boat is, frankly, short-sighted and rude.

If I had not started this blog, I wouldn’t have come into contact with many other parents all living a similar life, particularly other bloggers. I wouldn’t have made friends, both virtually and in ‘real’ life, with many other parents and with whom I can share experiences, concerns and good times. I wouldn’t have received the many messages via the blog and my Facebook page from other parents, thanking me for writing about sometimes difficult subjects that they thought they were alone in experiencing. I wouldn’t have been able to use my online presence to ask for advice from others, both for me and for those that message me asking if I know about this or that. If I hadn’t started this blog, I would most likely have bottled it all up and imploded.

As far as I am concerned, writing about my child is my prerogative. Obviously, I don’t use her real name, because I do use photographs of her. Yes, there are readers of my blog who know Tink in real life and know some of the other people mentioned in my blog, so I try to be careful about what I say. There are things I don’t talk about in great detail, because I know it’s inappropriate for whatever reason. I might mention that Tink has a meltdown, but I would never post a video of it as it’s not something I feel others need to see.

I write to share the ups and sometime downs of life with an autistic child. I do this because not enough people know about it. I write to change perceptions of autistic people; there’s simply not enough acceptance and we need to change society, because I sure as hell am not changing my child! I write to keep those that care about us updated about Tink’s progress (or not, as the case may be!). I write to share the funny things she does, the little things that amaze me or worry me. She’s awesome ausome and I want the world to know!

At this present time, Tink is 4 years old. I can speak for her. I am her mother. I live her life with her every single day. As she grows older, and if this blog is still going, I hope she will contribute to it herself, with her own thoughts and opinions, or, even better, start one of her own. And if she decides she’d rather not discuss her life online for all to see, then that’s absolutely ok with me. But for now, I’ll keep on writing, advocating and sharing.

For anyone to tell me that I do not have a right to do that is denying my child the voice that they’re saying she should have!

Mummy Times Two
Spectrum Sunday
Comments
Defending Parent Bloggers
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25 thoughts on “Defending Parent Bloggers

  • January 15, 2017 at 6:23 pm
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    So well said 🙂 the comment you referred to really stung for me too 🙁 this time last year I felt very alone and then I started my Blog in March 2016 and I was so grateful to link up with other bloggers were going through exactly the same and made me feel a lot less alone 🙂 x

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    • January 15, 2017 at 8:27 pm
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      We’re all here for each other x

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  • January 15, 2017 at 6:49 pm
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    Well said…..I originally wrote a story about my son a few yrs ago for SWANuk and was told I should put it into a blog and I see it as therapy in that I can let my feelings out and also to make others more aware and less ignorant…since joining blogging community reading blogs like yours have actually helped me in many ways xxx

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    • January 15, 2017 at 8:27 pm
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      We all help each other. And we need it, because being a parent it bloody hard, additional needs or not!x

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  • January 15, 2017 at 8:10 pm
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    Yours was the first blog I came across after my sons diagnosis. It has helped me massively. I wish I had the courage to write, as I think I would also find it therapeutic. For now, I am happy to read your experiences- I love to hear of Tinks new developments, and your honesty. Your page has linked me to other pages which I now follow too. These real life experiences you all take the time to share are a huge comfort. I thank you all. x

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    • January 15, 2017 at 8:26 pm
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      Thank you, such kind words x

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  • January 15, 2017 at 10:52 pm
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    If we as parents cannot speak for our children who do not have a voice of their own to use themselves then we have failed and I as a parent to autism sure as hell am not going to let that happen I will speak protect defend till the day my daughter finds her voice and if people find that inappropriate or wrong the n I’m sorry but the problem is in your own life or am I saying or expressing something you see in your own life that you yourself don’t wish others to see ? Thankyou to the person who wrote this article people like you make parents like me realise I AM NOT ALONE so Thankyou . I will never stop being my child’s voice and if people don’t like what they hear then stop listening and give room for the ones who want to listen xxx

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    • January 16, 2017 at 6:56 am
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      You’re not alone! Thank you x

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  • January 16, 2017 at 7:53 am
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    Really well written and you are so right! Its a way of helping others also and yourself by writing it all down and sharing these moments. ‘Ausome’ post ❤️ Xxx

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  • January 16, 2017 at 8:53 am
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    I always think that if people don’t like it they don’t have to read it do they?! Ignore them I say! #postsfromtheheart

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  • January 16, 2017 at 9:45 am
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    I love this post so much, mostly I suspect because I agree. It’s been something that since yesterday has been very much on my mind. My daughter now nine, is very annoyed that I won’t let her be identified on my blog and that I write incognito. She would dearly love to shout it from the rooftops. In fact she’s so adamant that she wants people to know that she has started her own blog talking about her autism. There is a place both for the blogs of people with autism and for parents. The experiences are linked but different. We all need a voice. We all need solidarity and I think also hope for the future. I often wonder if blogs had existed more prominently whether I would have felt less isolated when Number One was diagnosed. Seven years ago, I hunted and hunted for other girls with an Asperger’s diagnosis, both for myself and Number One. I hope that our blogs will make those that come after of us not have to experience that aloneness. Thank you for linking this up to #PostsFromTheHeart

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    • January 16, 2017 at 10:02 am
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      It’s lovely that your daughter is so proud of who she is. Good for her for writing about it!

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  • January 16, 2017 at 11:19 am
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    I’ve heard of people criticizing about parents sharing too much about their children online. I’m on the fence about that sometimes, so I’m trying to reread and edit past posts that I’m worried might be sharing too much information about my children. I think that this is how I found the direction of my blog and decided to share more on multiculturalism rather than just anything about my kids.
    But I agree with the points you raised. This isn’t just a blog where you share details about your child that might comprise your child. It’s an awareness blog. People don’t know enough about autism and that is why you are sharing your real life experience about this. I would definitely appreciate something like this if we were going through the same thing. You see—there you go! One more person who doesn’t really understand what it’s like because I’m not in the situation. But that’s just not fair, because one day my daughters might meet autistic children and I also need to know how to help them adjust, if necessary anyway.
    I’m very touched by your post. I decided to follow your blog via Facebook to learn more. Thank you for sharing this on #Postsfromtheheart. Looking forward to reading more posts soon. 🙂

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    • January 16, 2017 at 11:54 am
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      Thank you Jackie. It really seems to be quite a decisive topic! Thank you for commenting x

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  • January 16, 2017 at 3:03 pm
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    Well said and congratulations for taking a stand. Honestly, damned if you do, damned if you don’t these days. If your experiences with your child can help even one other child/parent in a similar situation, then it is worth it! #PostsFromTheHeart

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  • January 16, 2017 at 5:10 pm
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    Totally agree. I sometimes worry about the things I write about the early days with my son (relationship breakdown, depression etc, etc), but at the end of the day writing helps me a lot and it’s also my story to tell. Our children (if they want and are able) can tell their story when they are older and hopefully by seeing us speak out and share our stories that will help them. #postsfromtheheart

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    • January 16, 2017 at 5:49 pm
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      Absolutely! Thank you for reading 🙂

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  • January 16, 2017 at 8:52 pm
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    A parent of a disabled child has as much of a story to tell as the child.
    Would they argue that a parent of a child who isn’t disabled shouldn’t write about their child until they’re old enough to consent?
    No one writes about their child to cause harm or shame them. Every parent writes, in my opinion, after feeling so alone at some point that they hope they may just help one person.
    There’s always someone with a list of 10 things you shouldn’t say about this or that.
    It’s your story to tell as you wish #postsfromtheheart

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  • January 16, 2017 at 9:52 pm
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    Thank you for writing such a beautiful post. Hearing such harsh comments can really take the rug from beneath your feet and knock your confidence. It has made me feel confident in my decision to blog about our special needs family giving us and others like us a voice. #postsfromtheheart

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  • February 4, 2017 at 1:52 pm
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    Very well said. Thanks so mush for writing. I actually had someone on Twitter tell me to ‘shut up about autism and just get on with your life’. I write to make the world understand, to make it more aware place. I hope when he is grown he will see that, and how much every word I write is full of love for him. Thanks so much for liking with #SpectrumSunday. We hope you come back next time.

    Reply

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