“Are You Okay?” – The Question Special Needs Parents Always Answer With a Lie

“I’m fine,” I said, “we’ll get there.”

I change the subject.

It’s the same answer as always and I’m still not really sure where ‘there’ is, perhaps it’s being happy.

What I could say is this…

“I woke up in the morning and I’m more tired than I was before I went to bed.

This was because Bella was up for 3 or 4 hours in the night and we still had to get up at 6.30 for the school run.

My husband works away and if I’m lucky I’ve had four hours sleep.

I’m trying to let Bella feed herself independently but I can’t bear to take Oliver into school late again so I feed her and I change her instead of allowing her to do it herself.

We run out the door all bickering.

Perhaps I should get up half an hour earlier – perhaps I am greedy wanting my four hours.

We had a hospital appointment; an hour’s drive each way.

I sit and tell the new paediatrician everything about Bella, she pokes her and says the same as the physio, Bella urgently needs Botox and new AFOs.

I know, we are still waiting for the appointment to come through.

She says she’ll see us again in 12 months.

If I’m honest I’m not sure what we have achieved, I feel deflated.

All I really want them to say is, you’re doing great, you’re doing the right thing – keep doing what you’re doing.

Well done!

On the way home Bella wants to go to the park.

My heart plummets, I’m too tired to carry her around the equipment, but we go anyway.

I carry her up the slide, down the slide.

I carry her along the monkey bars and over the bridge.

I ignore the children staring, Bella doesn’t notice.

I push her on the swing for twenty minutes and try not to be upset when the mum I tried to start a conversation with politely leaves.

I remember when trips to the park were fun, but this is exhausting and painful because I watch the other children running around and for a moment I feel jealous and incredibly angry that Bella cannot and will never do that.

At home, I desperately want to sit down but we need to do an hour of stretches and exercises.

Bella screams at me, she doesn’t want to do it, she says I’m horrible, I try to explain that I’m helping and we eventually get it done.

I get a phone call…

…the AFO’s that have taken 9 weeks to make have gone missing; our appointment the next day to pick them up has to be cancelled.

They’ll be in touch.

It doesn’t sound like a big deal but Bella can barely move in her current AFO’s and if she can’t put them on she can’t use her walking frame, or her standing frame and she is about to start school.

Stretches done, we collect Ollie and we have a lazy hour doing homework and watching TV.

I feel guilty Bella has had a boring day, I feel guilty I didn’t get time to do her reading or pencil practise and I feel selfish and guilty because I’ve had enough today.

When I put Bella to bed (after dinner and bath time and two stories), she grins and says I loved going to the park today mummy, you’re the best mummy ever.

I realise how lucky I am to have such a wonderful happy girl.

I have just an hour with Ollie, today we talk about our day and I try to keep my eyes open while he tells me about his computer game.

I feel guilty because I’m tired and I miss him so very much.

I haven’t spoken to an adult today, I haven’t had a moment to myself.

So when my friend comes over and asks me if I am OK, I say I’m fine because we have a few precious hours together and I want to talk about my favourite TV programme, or plan a girlie day trip out.

So, friend, please be assured that this is a very important part of my day, you are a wonderful friend and I need you to help me remember who I am, because otherwise I’m just a tired, grumpy mummy.

I am broken inside, I grieve for the child I never had, I am terrified of the future everyday but that’s why I see a counsellor – what saves me is being normal and googling funny cat videos with friends.

One day you’ll ask me if I am okay and I hope to be able to say ‘I’m good, I’m there’ and it will be very much thanks to you.”

Did Having a Son With a Disability Make Me a Better Parent to His ‘Typical’ Brother?

I’ve never said this to anyone but, boy, can my typical 4-year-old drive me crazy sometimes (most of the time).

I suppose I feel I can’t really say this out loud because I should just be so happy (and relieved) that he is just that, a typical 4-year-old.

Don’t get me wrong – I absolutely am!

But my goodness, no one warned me that he’d ask questions incessantly.

Or that he would have the ability to destroy a tidy room in seconds; that he could empty cupboards at the speed of lightening; that he would be so headstrong and determined; he’d knock my ironing pile over, just as I’d emptied the basket; or that he’d say the most embarrassing things in front of complete strangers.

And nobody warned me that it would be just the tip of the iceberg.

He drives me to distraction, but I love it and I wouldn’t change him for the world.

Every little bit of mischief, cheekiness and downright naughtiness is always under-pinned with a feeling of sheer joy that he is doing all these amazing things with such ease.

Things that his older brother can’t do and probably won’t ever be able to do.

I definitely think having my disabled child first gave me ‘something’ – I don’t quite know what – skills, patience, a different outlook…to parent my typical child differently than I would’ve if he’d been my first.

I imagine myself shouting, snapping and losing patience easily but life takes on a different perspective with a disabled child.

A tidy house, an immaculate garden, worrying about other people think – it just doesn’t matter anymore.

Our home is about fun, laughter, and games – who cares if we chip the paint on the walls playing wheelchair tag or we use the wrinkled bed sheets to make a den big enough for an amazing little boy, his big brother and his wheelchair.

The 3 People I Always Meet When I’m Out With My Disabled Child

Over the past 5 years I have noticed the number of strange encounters I have when out with my disabled child far outweigh those that I have with my typical 4-year-old.

Actually, I’d go as far as to stay nothing strange or out-of-the-ordinary ever happens when I venture out with my youngest child.

However, strange encounters are certainly a weekly, if not daily, occurrence when I take my 5-year-old out in his wheelchair, whether it is for a walk around our neighbourhood or just to the local supermarket.

I tend to put the people we meet into three quite distinct categories (it just keeps me amused).

The Nice

Firstly, there’s the people who don’t bat an eyelid at a little boy in a red wheelchair, flapping his arms, making strange noises, and shaking his head wildly.

They nod, smile, pass a polite comment ‘cool wheels’ or ‘great smile’ – they’re my favourite type of people.

Life is normal when we encounter people like that.

The Terrible

The second group are those people that even in the 21st Century still seem amazed that disabled children are allowed out into our communities.

These are the ones I have most fun with.

There are the ones who stare, not just looking for slightly longer than is polite, I mean they really stare, they stare so intently that they walk into lampposts, cars or other people.

I’ll often exclaim very loudly to my son (who is completely oblivious to this by the way) “Oh my goodness that lady in the red coat thinks you’re gorgeous!” which causes much embarrassment to them and amusement to me.

Along similar lines are the parents who quickly pull their inquisitive children away from my child.

I’d like to tell them it’s not contagious, and in fact if they stopped and explained to their child a little bit about disability that might help them grow into well-rounded and accepting young people – but these people are normally gone before I get a chance.

The Terribly Nice (emphasis on ‘terribly’)

And finally, there’s the group of people who consider themselves to be so ‘disability friendly’ that they make a beeline for me and my child.

These people are the worst type of people to meet and they have the ability to spoil our days out.

They tell me about some random, distant relative with a learning difficulty; they ask inappropriate questions about my child’s disability and his future – questions I struggle to contemplate myself let alone share with a complete stranger.

They wax lyrical about how amazing we must be (we aren’t), they ask how do we cope, without waiting for the answer.

They cause my child to get distressed as they try to hold his hands (which he hates) and make me stand still (which he also hates) – they upset my day.

On one occasion, a man brought his dog up to my son and said ‘he’s brilliant with kids like yours, he used to be one of those therapy dogs’.

The dog then started barking loudly and snapped at another dog walking past resulting in a sensory meltdown from my little boy and an abandoned family day out at the beach!