Does blogging about SEND really make a difference?

Many times I am asked why I blog, what’s the point or my personal favourite – am I just in need of having my ego stroked? Does blogging about SEND really make a difference to families?

Does blogging about SEND make a differenceDoes blogging about SEND make a difference?

When my eldest son was first diagnosed, back in 2005, with hydropcephalus, I googled it.  Or more accurately, I searched on MSN.  The results were terrifying.  The majority of sites I found only detailed the medical side of hyrdrocephalus.  If any parents were mentioned, it was usually with a very negative tale of the horrors they had faced.  I could not find one single post or site with something positive or personal.

I cried.  And cried and cried.  I sat with my husband and said “how on earth are we going to cope with this – this awful life-changing frightening diagnosis”

Less than a year later, my twins arrived very early.  As a result, my youngest son was diagnosed with Retinopathy of Prematurity.  Again, we googled it.   Now we found some positive stories but they were for children with ROP Stage III or less.  J had ROP stage V.  And could we find anything about this online?  Nope.  All the sites recommended you speak to your ophthalmologist.    Again, I cried.

Those first few years were so dark.  I remember visiting a nursery for children with a sight impairment, however, it was obvious that the children’s lack of vision was a secondary issue for many.  I felt like I had no one to turn to who would really understand what I was experiencing or who could give me the support or advice I needed.

Finding my tribe

Then in 2007, Facebook really became my friend and I found a group of parents who had children with ROP stage V from across the world.  One of them also had a son with a shunt.  (She also has the same sense of humour – and use of colourful language – as me and even though she lives in Canada, I class her as one of my “go to” people).

I found a group of parents who had children with hydrocephalus.  The joy of being able to chat to someone who understood VP shunts was beyond words.

I was finding my tribes.

Then slowly the parents, in these groups, started sharing blog posts from different parents in the States and Canada, talking of their experiences – the good and the bad.

As I read these posts, I felt like someone had given me a key to the cage of isolation. 

Here were parents saying what I said, thinking what I thought and making me realise I was not alone.  I was reading stories that could have been written by me.  Stories that made me genuinely laugh out loud, stories that gave me new ideas of things to try, stories that made me think about the future, stories that told me of things to beware of, stories that made me realise how far we had come and these stories helped me immensely.  They helped me to get out of bed each day with renewed hope, they helped me to challenge the medical model and to insist on the social model (didn’t even know they existed before I read some blogs).

They were the best medicine I could have asked for.

All of the information I wanted or needed was there.  Most importantly, I could dip into it when I wanted.  It wasn’t a course I had to attend, it wasn’t a whole book I had to read nor was it written by someone who said they understood but at the same time managed to get more than 3 hours of sleep per night.

I could find different views, different tactics – it became clear that what worked for one didn’t always work for others.

The burden I had felt of not being “good enough” or “informed enough” started to lift.  I felt like I knew these people; I felt for them when their day went badly and cried tears of joy when they shared good news.

Now, when I write blog posts, I think back to those days.  I write to share my experiences with others, not to say this way is the only way, but to say “have you tried”.  I write to ask people to give me ideas when I have tried everything I can think of.  I write so that someone coming across our blog will find something of use to them, something they can take away and try, or just something that helps to unlock that cage of isolation.

It’s not about the number of views or the burden of trying to be the best, the biggest or the be all and end all.  It’s about one parent reading it and thinking “It’s not just me, I am not alone”.

Some bloggers now work cohesively to raise awareness of issues and to help inform policy.  Some bloggers challenge the “this is the way we’ve always done it” mentality.  Some bloggers inform parents – without the jargon – of their rights, what the law says, what they are entitled to, etc.   Some bloggers now are regulars on the key speaker circuit – speaking to practitioners, politicians and decision makers about family experiences.

Each and every blogger is making a difference, whether that is to one other parent, to themselves (blogging about your experiences can be therapeutic) or informing policy.

So yes, I believe blogging does make a difference.

Start Blogging

My passion now is to get parents of older children, those who have years of experience and knowledge to share, to start writing.  Whether it is their own blog or guest posts for other blogs (Bringing Us Together are always happy to share guest posts – anonymous if necessary – just drop us a line).

Even 12/13 years ago, blogging was not as mainstream as it is now, so the parents of older children probably shared info with their immediate network but possibly not via a blog.

Is that you?

Or perhaps you have a younger child and you have considered writing a blog but have no idea where to start?

If you have considered it and then thought you have nothing different to offer, then you need to appreciate that you are the difference that you can offer. We can all relate to others but our stories will be different, our voice will be different, the people we deal with will be different and attitudes will be different. Every one has a story to tell, how you choose to share it is up to you.

Sign up for updates.  We are going to be writing a few posts to explain the different types of blogs, share some blogging tips and also links to some amazing sites that share their blogging expertise if you want to take it a step further.

If you want a bit of inspiration, maybe a chance to see what other parents blog about, then check out our SEND Bloggers page.  We know there will be something there for everyone.

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Debs is one of the co-founders and Directors of Bringing Us Together. She is mum to three child with a variety of SEND and has a great husband.

BuT Site Admin

Debs is one of the co-founders and Directors of Bringing Us Together. She is mum to three child with a variety of SEND and has a great husband.

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19 Responses

  1. I think SEND blogs raise awareness and help to remove the negative stigma attached to some areas of SEND. They support other parents who may be struggling and offer advice. The importance of this shouldn’t be underestimated!

  2. Hana says:

    Absolutely!! SEND bloggers finally stopped me feeling so alone. And the baps were great fun!

  3. I blog because I feel my children are ignored, forgotten and voiceless and I want to change that. I want to help make the world more aware in the hope they grow up in a society that is more tolerant and caring. Their lives are of value and they have so much good to offer.
    I also blog because my life as a carer is one so few seem to care about. I refuse to sugar coat my life or my feelings because people need reality and they need to know they are not alone.

  4. Ray says:

    I’ve made so many friends and people I can count on through blogging, and so I can only imagine that SEND blogs are simply invaluable!

  5. Jenni says:

    At first I started blogging purely as a form of therapy to get all the thoughts in my head out…then when I finally let people read it they said it helped them to understand a bit about what life is like for us. Also to help others to know they aren’t alone

  6. Emma says:

    Blogging really is a great way of connecting with new people and for me as a sort of therapy.

    Sometimes it’s easier to write your feelings down and put out into the universe then talk to someone close to you x

    • BuT Site Admin says:

      I totally get that. Sometimes I start writing and then realise I obviously had issues about something and hadn’t always realised.

  7. wendy says:

    We all blog for different reasons, yet our goal is the same that is to help others. Great post Deb

  8. Laura Moore says:

    The reason I blog is mainly to help people. It seems to be in my genes that I just want to make life easier for people and my blog is definitely an extension of that. Plus I love writing so it’s a nice way to spend some time.

    • BuT Site Admin says:

      Laura, I think we can all assure you that your blog is definitely making life easier for people. I love your passion for making a change.

  9. Steph Curtis says:

    Yes, all of this is why I blog too! And the more of us out there blogging, the less of a minority we become. Great post x

    • BuT Site Admin says:

      Thanks Steph – I love that minority comment, it has started the old cogs whirring as it has given me an idea for another post

  10. I had a message from a lady in Canada the other day saying that my blog has inspired her to campaign for Changing Places toilet facilities in Canada.

    That is another great reason to write. So many parents, for so many years, have just struggled on without asking for things to improve. But if we don’t ask, nothing will ever change.

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