Additional Needs

A Better World For My Daughter With Special Needs

Posted by Ceri-Ann Brown on 5th September 2018 Additional Needs, Advice & Support, Disabilities

Share this article

I'm not sure if it's something I've learned since becoming 30, or a mum, or a mum to a special needs child... or all 3.

But I realised recently that all I really want is for the world to be a better place.

I know that sounds cheesy, a bit like when pageant contestants claim that all they want is world peace, but really, wouldn't life be cool if everyone was just a bit nicer and compassionate?

One of the biggest mental struggles I've faced since having Amy is why can't the world be more accessible.

The lack of facilities for people with severe mobility impairments is utterly ridiculous.

I was in a supermarket recently with Amy and she needed a nappy change.

We got physically stuck in the door trying to get into the baby changing facilities.

I was enraged.

The baby changing table was suitable for ages 0-5, and the disabled toilets had only a little extra room and a grab rail.

Nothing at all for people like us.

I managed but it was a huge struggle.

I know that in year or so’s time this won't be an option and our only choices will be to:

1) go home

2) never leave home

3) change her on the floor or

4) change her in the van.

It isn't acceptable.

Shops having steps in the entrance that are not wheelchair friendly.

Get a ramp!!

Or when the disabled entrance is round the back as if people with disabilities are some sort of second class citizen... and why should they have to travel further and go out of their way?

Surely, they should get the same access as everyone else.

The other struggle I have is people's perceptions of us.

Staring happens, it's inevitable.

But it doesn't make me hate it any less.

Thankfully I don't think Amy has noticed yet as people unabashedly stare at her, then to me, then back to her... eyes starting at her splints, moving up to her tubes, then to her face and arms watching her uncontrollable movements. JUST SAY HI!!!

Or stop looking!

Depending on my mood, this can either make me feel very snappy and upset,

or, I can calmly use it as an opportunity to raise awareness and promote inclusion.

If someone is staring I will say, "Look Amy, that lady is looking at you... are you going to wave?" and try to politely bring them into the conversation.

Hopefully they leave the encounter having learned something... namely that:

1) people are people regardless of diagnosis

2) smiling and saying hi can make the world a better place

3) yes, we can see you staring, you are not discreet.

Recently as someone was gazing at her mouth agape I said, "I know right? She's absolutely beautiful, isn't she?" to which the person immediately stuttered and became flustered but then couldn't agree more and then eventually went on to have a nice chat with us.

It's amazing also how a nice gesture, like taking a little time out of your day to help someone can make such a profound impact.

Recently, I became very burnt out.

Trying to sustain the level of activity Amy expects each day through the summer holidays is truly getting to me!

A few days ago, I could hardly get out of bed.

I pleaded with Amy that we just have a calm quiet day watching TV and being happy.

She was having none of it.

She screamed and cried and eventually was sick everywhere.

It was awful.

I felt guilty for not being able to be what she needed me to be, but also a bit resentful as we've been busy everyday this holiday.

It was truly one of those days where anything that conceivably go wrong - it did.

It was the child being sick, it was me accidentally washing a dirty nappy, it was me smashing a cereal bowl, and it was the bag of raisins that flew out of the cupboard and poured all over the floor.

You know the type of day.

You're kind of just waiting for a letter to come through with a huge unexpected bill, or for the iPad to die.

My mum came to the rescue!

She arrived in her car, and took Amy into town on the bus.

She was out for 3 hours.

That time enabled me to go to the doctors to sort out my anxiety medication and also to catch up on a couple of chores and, most importantly, consume a hot beverage.

My mum will probably never realise how truly grateful I was for this gesture.

I know how hard it can be pushing that heavy chair, dealing with various behavioural tantrums and so on.

Whilst I was out at the doctors, a friend had left me a little surprise by the front door (not meant to sound awful!).

As I approached the door I could see a carrier bag, and a beautiful rock with a llama painted on it.

Inside the bag was a bunch of flowers, a bubble machine (presumably for Amy but I love it equally), a light up wand (again, both big fans) and chocolate.

The reason for this?

It wasn't my birthday, no.

It wasn't a get well soon, or a thank you gift.

It was simply a random act of kindness to brighten my day and let me know that I'm doing a good job in life.

How incredible is that?

So, you see, the world is a better place when we do what we can to make it better for others.

Even when your day is dull and storm clouds surround your every being... there will always somewhere be that little glimmer of sunshine peeping through urging you to carry on.

It helps me forget for a moment how much is wrong with the world - lack of access, people parking in disabled bays when they shouldn't, people judging me or my child and so on.

It reminds me that there are still good people in the world that care and don't want your perception of the world to be shattered.

Those moments come in many different forms.

It's your other half giving you a hug when he knows you need it.

It's your dad saying, "Hey, let me push that chair and give you a break", it's even just a neighbour smiling and saying good morning.

It's your child for the first time in weeks going to bed without a fuss... smiling at you, and rolling off into a gentle slumber, happy with her day.

I wish I could make the world a much better place for Amy.

In my own little ways, I am trying every day by trying to get better and be the mum she needs me to be.