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Special Needs - Inside Out

Special Needs - Inside Out

‘Mummy, are you channelling Anger or Disgust right now?’

‘I think Daddy…. Is it Anger?’

‘Mummy, Alex is mainly Sad now, isn’t he?’ (His top lip was wobbling, so I thought probably yes).

Which got me to thinking, has Alex got them all?

You’ll remember that Riley, as a baby, started out with just Joy, who was joined by Sadness and those were the only ones she needed for a while.

Alex, in his sometimes still quite baby-state, had he developed the rest?


Alex has Joy in abundance.

Sometimes I think he feels the whole world is just there to entertain him!

Which, you know, it does.

He delights in the world my little boy.

Toys that squeak and make a noise… going to bed nightlights that play music… everyone who tickles him… splashing in the pool, in the bath…all make him laugh.

And he still – still! – sometimes laughs so hard he falls over backwards.

He is the sunniest of children.



Unless… something upsets him.

Then joy turns to… ‘Waaaaaah!’

Loud noises can upset him… being told off very very firmly can upset him…. Food not coming quickly enough upsets him (though that just makes all of us laugh, which probably doesn’t help).

Waking up in the middle of the night with what I can only assume is a bad dream makes him sad… not feeling well understandably makes him sad.

Not. Getting. The. Out. Of. Reach. Toy.

Makes him Sad.

But we are able to make him feel better.

We can cuddle him, stroke him, tell him we love him, find that toy, feed him quicker and Sadness leaves.

Which is (ssssh!) quite, you know… normal.

But then, beyond those two…


This is primarily directed at anyone trying to make Alex do his physio.

I’ve lost count of the number of times he’s brought out of school accompanied by, ‘He got very angry at me today because we were doing physio!’

By angry, Alex gets very, very red in the face and cries.

But there are no tears.

He’s not upset just really, really annoyed.

And that’s OK with me because – annoying as it is (and it really is) – it’s a developmental stage, a connection; if I do this, they may stop trying to make me do this.

They don’t, but I like his thinking.


Alex walks beautifully holding on to both of my hands.

If I try to take my hand away, he stumbles, desperately trying to find my hand again.

That’s Fear.

Should I try and get him to slide out of bed when he can’t feel the floor with his feet he will slip and slide very slowly.

Very carefully.

Until he connects with the floor.

That’s fear.

He knows that he doesn’t feel safe.

He may not get that it will also hurt if he mis-steps, if he falls, but he realises when he doesn’t like something, when it makes him unsure, and there’s Fear (and a little caution).


Only one word needed here: broccoli.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

As Alex Grows Up

Meet Our Blogger

This is, primarily, a blog about our little boy, Alex. He has an undiagnosed genetic condition which has resulted in global developmental delay with a visual impairment. In reality what this means is that although he’ll be 4 in July, he’s non-verbal, he learnt to sit up properly only within the last 6 months and is now a whizz at spinning round on his bottom to reach things and grabs at anything in his reach – safe or not… He needs help with every single every day activity and sometimes his hand/ eye co-ordination is off. It’s bang on, however, should you offer him a chocolate biscuit… He’s a mystery, an enigma and utterly utterly gorgeous. He’s also cheeky. And funny. We've started this page for you to keep up to date with him, watch his progress and track our fundraising efforts.

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