Twitter and how it’s helped me – April is Autism Awareness Month – Day 19 of 30

I can’t remember the exact date I joined Twitter but it was sometime after Children In Need last year (2011).

My sister-in-law (bless her) was my first follower and up until then, I had only pottered around on it. Had a look to see what my favourite writer and singer were up to and that was it.

And then I thought I’d have a little search under #autism and I’m so glad I did! The #youmightbeanautismparentif hashtag was just starting up and very soon I realised that this was a way of connecting with other parents/carers of individuals on the autistic spectrum.

My post below – which I wrote in February – is still as relevant, if not more so now:

“PENNY FOR YOUR THOUGHTS: (Feb 2012):
In a pensive frame of mind today. Now that I’ve been part of the twitter community for three months or so, it’s take stock time.

When I first signed up on twitter, I started off by following my favourite singer (and teenage crush lol) – no I’m not naming! Then a writer who’s work I always enjoyed reading. Left it like that for a while. Made one reply to a celeb’s tweet and when I didn’t get a reply, thought “humph, bit rude” it’s only when you look at their profile and follower numbers that you realise they are probably
absolutely bombarded by replies every time they tweet. Even if it’s something like “run out of milk”.

And then you get a bit more confident, you start searching for people who share the same interests or, in my case, have a child with autism. You reach out to them and they respond.

The first time I started have a twitter conversation with someone who also had an autistic child, I remember thinking “is this for real, how does she know how I’m feeling – how scared I am for D’s future, how much pride I take in the little achievements that she makes, how does she know?” You swap photos of your children and think “wow, I’ve found a kindred spirit here”.

And then leads on to following more people, having more people following back. People that make you laugh with their antidotes and jokes, people who make you cry with their life stories, people (bless their souls) who aren’t around any more due to the cruel and non-discriminating disease called cancer.

I changed my user name from Bluecrisps to reflect more of why I’m on twitter, I started blogging and am so pleased when someone comes back and reads it and says “yes, I identify” or “we’ve been through that and this is what we did”.

None of us know what the future holds for our children and, if I’m being honest, the way the Government is trying to cut and disregard the disabled community really really scares me. Any parent of a special needs child has enough to worry about. We need to take notice of the Welfare Reform Bill and DMS5 proposals as it will affect a lot of our special needs community. Sign up for Pats Petition if you haven’t already, singularly we aren’t powerful, put us together and we have a voice demanding to be heard.

I’ve unfollowed quite a few celebrities, I’m not interested if they’ve run out of milk anymore.

My only regret is that I miss out on the tweets from America, Australia etc because I’m asleep (if D let’s me sleep that is).

So, to every one of you that reads this, thank you.”

And one year on…it’s amazing, the special needs community is wonderfully supportive. There is always somebody around, of course it’s not telepathic, you have to reach out/reply but advice/support/virtual hugs, it’s all there and available if you want it.

If someone had said to me this time last year “you’re going to start blogging and eventually you’ll have a website”, I would have said they were joking. Because I am incredibly un-technical but the beauty of my little phone is that there is a WordPress app so I can literally blog “on the move”. There have been some great people who have advised on the best blogging platform to use; given their feedback on the theme chosen: added widgets when I couldn’t (I said I was un technical!) and assisted me greatly in setting up the website. Very very grateful.

There’s been a couple of low points: trolling, both very unexpected occurrences – click on the links to read The Dark Side of Twitter and Spam, Ham and Rotten Eggs – but I’ve learnt now to “block and ignore” if necessary.

I have some more plans for the website and, potentially another one. I can see the need for the second one, it’s putting it into practice. Watch this space!

I have come to realise that autism awareness isn’t enough for me anymore, acceptance is what’s needed and with one diagnosed, one in process child at differing ends of the spectrum that need isn’t going to disappear any time soon.

I am very appreciative of every mention/RT/blog comment and I try to thank each one.