The Loneliness Of A Special Needs Sibling

It’s just after 6:30pm and her brother has just had a seizure in the bath. While her mum pulls him out and dries him her dad rushes upstairs to help.

And she was left alone.

It’s 11am at the retail park and suddenly her brother has disappeared. Her mum shouts his name and runs to the lift knowing her brother loves them, while her dad runs to the door to make sure her brother hasn’t ran into the car park.

And she was left alone again.

It’s 2:30pm on a Tuesday afternoon and she is with mum and her brother at yet another hospital appointment. Her brother’s height is taken, his weight measured and the eye specialist looks into her brother’s eyes while talking to mum in words she can’t understand.

And it feels like she isn’t there at all, even though she is.

Life feels all about her brother. She can only go places if HE is well enough, if HE can cope with it, if there is provision for disabled children. She hears others at school talk about zoos, trampoline parks and ice-skating rinks but she has never experienced those. She could tell them about tonic clonic seizures, communicating with a non verbal brother or what an occupational therapist does. She knows that isn’t what anyone wants to hear about though.

So she just stays quiet.

She does her own thing. She finds her own way of coping. She is the epitome of resilience, the definition of bravery, the personification of inner strength.

But she’s lonely. So very lonely.

She’s typical of so many siblings lost in the shadows while the limelight shines on the sick sibling, the disabled brother, or the struggling sister.

Expected to carry on with homework while her brother screams, to try and watch TV without complaining while her brother has a meltdown, to still sleep while her brother bangs toys throughout the night because he sees no need for sleep.

These are the siblings whose loneliness we don’t like to see. We don’t like to admit that disability affects the siblings as much, if not more, than the child who is diagnosed. It makes us uncomfortable to think we have caused an innocent child to experience mental pain while we care for the physical pain of another child. We hope beyond hope that things will settle and one day we will ‘make it up to them’ for the times we couldn’t make their school play because their brother was sick or in hospital. But that day never seems to come.

So she just carries on.

Until one day she says ‘it feels like I am invisible sometimes.’

Then you realise the utter loneliness, the repeated rejection she had felt and the fear she experiences daily. You vow to change things but nothing, nothing, will take away her loneliness.

I promise you siblings, you are NOT invisible. You are the real hero’s in all this. You are the ones who’s smile keeps everyone going, whose humour brings life and whose strength inspires.

You may feel lonely but you are never alone.

I promise you so many other siblings understand and they have been where you are.

You got the raw deal here and I’m sorry.

This post first appeared here. Do check out my other blogs on Firefly (www.fireflyfriends.com) and my regular updates and thoughts on my Facebook page (faithmummy).

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Blessed with a different child (A caravan holiday in peak season with a disabled 9 year old)

Back home we live in our own world: You go to school in a town far away and I take you to quiet places where few people go, like the park early in the morning or swimming much later after dinner.

Here we can’t do that.

Here it is obvious that I am blessed with a different child.

Caravan parks don’t isolate the disabled children like education does. Caravan parks don’t give you preferential treatment or appointments like the health service does. Caravan park restaurants won’t let you order mashed potato for breakfast like I make you at home. Here you are the same, but different. A bit like the caravans which on the surface all seem similar yet every single one is different.

When we arrive and unpack those around see I am blessed with a different child even before I park the car. There you sit in the back flapping with excitement and chewing on the nose of your cuddly toy. It’s not something 9 year olds do really and you look…odd.

I forget that others see you and stare. It makes me uncomfortable and reminds me why I don’t take you out as often as I should.

Is taking a disabled child to a busy caravan park in the summer holidays the right thing to do?

I think it is.

I take you to the on-site pool. Other 9 year olds are swimming unaided, playing with friends, drying and dressing themselves and doing hand stands in the water. You are lead by the hand by your mum, still using swimming nappies and a rubber ring and you giggle just sitting at the side dipping your feet in the shallow toddler splash pool. You are every bit as happy as all the other children, just in a different way.

I watch you and smile. Being blessed with a different child has taught me to enjoy your happiness every single day. As I look about I notice a life guard watching and smiling. Your different-ness has made them smile too.

I take you to the busy park. Other parents sit nearby chatting and drinking. I am lifting your legs, guiding you to the steps each time, and encouraging you down the smallest of slides so that children 7 years younger than you can take their turn. You make happy baby noises and wave your hands with excitement. Some parents move their children away, some children leave of their own decision but some carry on regardless. I am not embarrassed by my child but I am embarrassed at how others respond to him.

What’s so bad about seeing someone blessed with a different child?

Being in a busy caravan park with a child who is noticeably different to his peers has made me realise something:

My child is not the issue, the issue is how others respond.

I have not helped my son or my community by going to places others don’t. So from now on I promise to change that.

I am blessed with a different child and I won’t hide that anymore. If he wants to swim at peak times that’s where I will take him. If the park is busy what have I got to be afraid of?

I’m done with the isolation. If I can cope with a busy caravan park in summer season with a nine year old who can’t dress himself, can’t speak, can’t jump and still eats with his fingers then I can do the same back home. If he has a seizure in public so what? If he has a meltdown why should I apologise? He is a child just like any other child. He is beautiful, funny, full of mischief and entitled to play just like any other child.

I thought I was making things easier for my son by protecting him from comments and stares but in reality I have made both more likely because children like my son need to be seen more to be accepted more.

I am blessed with a different child and it’s about time the world saw a lot more of him!

I’m so glad I took him to a busy caravan park in the height of summer season. It gave me confidence and delight to be the one blessed with the different child.