There was a lot of devastation, hurt, blame, denial and grief that followed this time. But now when I think about this, I think; why?

Why would having a disabled child ruin my life?

Oscar was born prematurely and was very poorly when he was born. We did not know if he would survive. If anything had have happened to him, that would have ruined my life.

I will admit that I did not want this for Oscar, no parent wants their child to be ill or disabled, but, Oscar has only made our life better. He is so beautiful and special.

There is not a day goes by where I am not thankful for my son as I know that some people who have been in similar situations are not as lucky as me.

Some people do not get to take their babies home.

I cannot think of anything worse than this.

Oscar is my absolute pride and joy, the love of my life. Despite everything he is such a happy and loving little boy. Although, at times things can be challenging, we just have to get on with it. Nobody said life would be easy. And, even when times are difficult, a smile from Oscar makes everything worthwhile. Oscar’s smiles can melt even the hardest of hearts.

For me, I would not change Oscar for the world, as he would not be Oscar. To me he is perfect, even if the world sees differently.

But, would I change things for Oscar? In a heartbeat.

At the end of the day it is Oscar who is disabled, not me.

If I was not prepared to do everything I can for my son including looking after him for the rest of my life, then as far as I am concerned I should never have been a mum.

So, no, having a disabled child has not ruined my life.

I am honoured to be Oscar’s mum and I couldn’t be more proud to say that Oscar is my son.

 

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.

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!

That was so rude!  I should strangle her with a G-Tube. No, come on. Calm down. Calm down. Deep breaths, count to ten.

1…2…3…stop grinding your teeth…4…5…they didn’t mean it, they just don’t understand….6…7…but what a stupid, insensitive…NO! no, just breathe…8…

Let’s hope that parent makes it to 10.

In fact, let’s hope every parent can keep their cool when somebody makes a rude comment about their child’s condition.

It happens far too often if you’re the parent of a child with special needs.

Some people with typically-developing kids can say all sorts of stupid stuff, which may not be aimed to hurt you but can still land a sickening blow.

We asked some mums of kids with disabilities – Stacy Warden, Lenice Heffernan, Dawn Hamilton and Julie Brocklehurst – to tell us what people say that boils their blood:

1. “He looks so normal”

2. “You are so lucky you don’t have a child who can talk back”

3. “You’re lucky you don’t have to chase after her”

4. “Isn’t there a vaccine for what he has?”

5. “God only gives special kids to special parents”

6. “You’re a saint, I could never do what you do”

7. “When is he going to start talking?”

8. “My child learned to read by the age of 1, I am raising a baby genius”

9. “Oh, how sad for you. Maybe you’ll get it right the next time”

10. “Is he your only child? Are you going to have another one?”

Do you hear these comments on a regular basis?

But you know something…you can’t!

And I can’t either, we can certainly work hard at it but to be honest I don’t have a problem because this is me and it’s just going to take time and if it happens, super!

So I thought I’d share a few ideas to help us get over this together, and get back to having fun.

Apart from thank you and I love you… this is what I am saying to you when you gaze into my eyes looking for a response.

Don’t Sweat the Small Stuff

My morning therapy sessions, hospital visits, mealtime routines and massages before I go to bed can be a pain for both of us, but you know what?

I enjoy your company, so much!

You are my best friend. So don’t stress, focus on the good times. Life is good!

You Only Think You Have Problems  

A problem is a solution waiting for us to find it.

Remember all the times when we go to the shops and do stuff together. I am always so proud to be with you, and I know you are delighted to be with me too.

Life’s great. Let’s celebrate it together.

Remember there are people out there who have bigger problems than we do, just look at the news daddy makes us watch every night!

Genuine Happiness Isn’t Out of the Question

Happiness is always possible because happiness is in the mind and not the body, and we feel the same things although we are not the same.

Everybody is different and I love you for what you are.

I know you cant tell sometimes but you make me so happy Mum!

I Am What I Am

Like I said I am me and all I ask is that you love me for what I am and don’t feel awkward any time, you give me 100%, all of the time.

The biggest gift that you can give me is acceptance of me, just the way I am. I have no problem with this.

I see your heart sinking at therapy sessions sometimes. It doesn’t matter what the world thinks or that people stare at us in the street or at the restaurant.

At the end of each day I look at you and I am so thankful I have someone as wonderful as you in my life. Not everybody has a ‘you’ in their life!

Family Participation is Possible

Since you bought me the GoTo Seat I feel part of everything and involved in our family life because laying on my back and in my wheelchair most of the day is, well pretty boring to put it mildly.

We all have issues. This is why we have families, we can share them with and care for each other.

Family participation has never been better, I feel more included now than ever, we can go to the swings in the park, I can sit at the table and play with Thomas and even go on the bicycle cart with daddy as driver!

Never Give Up on you or me

The other thing I want to ask is that you never give up on me.

Believe me I know it’s difficult when I see the concern and worry on your face.

We have each other and that’s all that matters.

We are in this together, for the long haul. I am trying!

Don’t Tell Me you Can’t

The other side of that coin is I know I can’t give up either.

The doctors and therapists may find something new around the corner and you know something, maybe they won’t!

I see you looking for hope on the Google machine everyday, sometimes you find it, sometimes you don’t.

Sometimes you read something and smile, sometimes you read something and cry.

Please don’t stress if I stumble sometimes. Be proud of me that I keep on trying. Because I am proud of you!

You can do this, we can do this together.

Smiles Are Free

In return I’m going to promise you that I’ll always try my best to greet you with a smile no matter what the day throws at us.

I want to tell you how I perk up when I see your smiling face.

For someone who is always worried about money… smiles are free.

Let’s give them away to everybody, free of charge!

I think it actually freaks people out that we both smile at them when they stare at us.

I love how it makes them feel awkward.

Life Is Too Short

It really is you know, and that’s for all of us! I just want to put my best into everything every day and give something back to everybody.

I appreciate what you guys do for me every day, even my younger brother Thomas, who feels like second fiddle sometimes.

Please don’t be mad when he gets frustrated either.

I understand why!

I Have a Disability, I Wish Other People Would Get Over It

I mean this in the nicest way.

The other night I heard you and dad arguing about my progress at therapy and what the therapist said.

Please let’s accept what happened and move forward, it is total acceptance of everything which will help us all move forward.

We can’t turn back the clock can we?

We will all have our good days and bad days, we just have to live with this, its part of who we as a family are.

Thanks for listening to me Mum.

I hope I didn’t say anything that brought tears to your eyes because you look so pretty when you laugh.

Let’s throw our problems out the window, and go exploring in the garden, I love when we do this!

In what ways does your child inspire you and others everyday?