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The things that upset you as a special needs parent

The things that upset you as a special needs parent

Just because my child is disabled doesn’t mean I can’t sympathise with you.

There is a feeling, I think, that - because I have Alex - anyone else’s troubles are insignificant… trivial in the face of my life… and his life… and where we may be headed.

If you want to complain that your child isn’t sleeping… I’m happy to hear this.

If you want to tell me you’re worried they don’t know their colours yet or are late to walk or say their ‘y’s oddly… I’ll listen.

If you want to talk about the fact that they just won’t stop talking, or moving, or making a mess and never giving you a minute’s peace and you’d just like a break… I’m happy to lend an ear.

Because. I’m human. Because. I can empathise. Because. Your shit is your shit.  And my shit is my shit.

What I find hard to hear is ‘Oh, I shouldn’t be complaining to you’, or ‘Anyway, you don’t need to hear this’ because, although I utterly know it’s said with the best intentions… what it actually feels like you’re saying is: ‘Oh goodness, your life is so much harder than mine, really this is trivial, I have no reason to moan (you on the other hand really do)’.

And I have to tell you that I count my blessings every day.   I love my son.  I love that his is a sunny disposition… that if he’s upset I can usually figure out what is wrong…  That when he’s ill he wants cuddles. That he tries – every day – to move his little body the way he wants it to even though it doesn’t always want to cooperate…  I love that his sister and he have the most amazing bond. I love that he makes us laugh, I love that he is as he is.

And though I can’t honestly say hand on heart that I don’t wonder how he would be – where we would all be – if he was a typically developing 5 year old – I do wonder if he would be this same delightful boy.

And this journey of ours has taken us to places I never would have visited and we’ve made friends – good friends – I never would have met.

One thing I’ve learned from having Alex is that the moment you enter another person’s world you see that there is always something… a wayward sibling, a dying parent, an ill spouse, a redundancy looming… something to worry about.

For no-one’s life is ever perfect.

The parts of your life that are upsetting to you are the parts of your life that are upsetting to you.

This isn’t a competition.

So talk to me.

And I’m so happy to listen.

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.

View Helen’s Profile

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