Sunday, January 22, 2012

Bee-Worthy Share

I read... ALOT. I have an online file chocked FULL of stories, information, and lovely readings to share. Here is one I stumbled upon this morning; one that as parents to children with extreme medical necessities, living with hydranencephaly, we can all relate to. For those of you who cannot fathom, please read this... it is mostly for you:

Choices and words of wisdom (ahem)
Posted on January 18, 2012 by Musings and Chatterings...of a busy mind.

I am a Mum. A mum who is 40 years old, who is getting more grey in her hair, who is carrying a couple of extra stone. I’m a mum who loves red wine and chocolate, who loves to chat to friends, who loves to read and write, cook and garden. I have one child, my adored daughter Fionnuala who is 4. Sometimes I can scarcely remember a time when she wasn’t in my life. She is my absolute pride and joy and at times also a complete headwrecker. Just like most 4 year olds!

Fionnuala has a significant level of disability. She cannot walk yet or talk although she is very vocal and has a couple of words she uses correctly. She crawls and bumshuffles and can pull to stand at furniture and cruise along. She can get up and down the stairs on her own. But she is still in nappies and can’t use cutlery. She has regular appointments for physiotherapy, occupational therapy and speech and language therapy. She goes to a local pre-school two mornings a week and in September she started at a special needs unit 2 days a week. That unit is 23 miles away and there is no transport available, so that’s more driving for me.

Her condition inevitably means she requires more hands on care than other children her age and she has lots of appointments for various therapies and to see various medics. I have never been ashamed to admit that at times I find it very hard, somedays overwhelming. But most of the time I can cope fine.

None of the driving and travelling to collect nappies or make appointments or pick up equipment bothers me, its just a part of our lives now. Since Fionnuala was born – in fact since we got the bad prenatal diagnosis over 4 1/2 years ago – we have found that our outlook on the world has changed. Inevitably we have greater awareness and understanding of disability issues, of the problems that people with disabilties face trying to access services and just to live in this increasingly busy and stressful world. Like so much else, this has become part of our lives.

But one of the things I have NEVER gotten used to are the probably well-meant but ultimately hugely annoying comments like “God only sends special children to special people”, “‘You must be a saint, I couldn’t do it”, “She was sent to you because you can cope with it”…… and many more of the same type.

Now, I fully accept that most people – thankfully – have no idea what being a parent to a child with special needs is really like, and I hope they never have to find out. BUT what do these people think they would do if it happened to them? Hmmm? Leave the child in a hospital? Hide away from the rest of the world? I’m sure that these kind of instances do happen. But I bet they are extremely rare.

My real gripe in all of this is the notion that I’m some kind of saint for managing Fionnuala’s condition and needs and appts. Eh no. I’m a mum, a busy, sometimes frazzled, sometimes impatient, occasionally snappy Mum. I’m a mum whose heart breaks a little bit every day when I see another challenge for Fionnuala or when I dwell on what her future holds and the life choices that will not be open to her.

Like every parent of a child with special needs, I do have days where I feel unable to cope. And at those times in particular it really doesn’t help when people go on as if I’m doing something superlatively wonderful – I don’t have a bloody choice.

I’ve ranted about this to friends before and some have asked me what suggestions I would make to people who don’t know how to respond or react to a child with special needs. Well, all I can offer are these few thoughts- and this is really aimed at casual acquaintances and people we meet out and about (not at friends who know us better):
Don’t tell us parents our situation is a tragedy (yes, that word has been used).
If you don’t know what to say, thats fine. And its ok to just smile or to say that you don’t know what to say.
If you have children with you and they want to know why the little girl is in a wheelchair, don’t shush them and look embarrassed. Just tell them that she needs help getting around. If they want to come look at her wheelchair with the big orange wheels thats ok
If you see a harassed, stressed parent whose child is screaming or having a meltdown, please don’t tut-tut and mutter something about bad behaviour. Our children can’t help it.
A smile and making eye contact does wonders to lift the spirits of a parent who might be feeling especially sad or worried or tired that day.
Above all else, accept that people with special needs are part of the community. Don’t go out of your way to make a big fuss, but please be understanding that we might need extra space in a coffee shop, or that if you occupy a disabled parking space “because I’ll only be a minute” that means we might have to drive a good bit away from our destination to find a space we can easily use.

And thanks for taking the time to read this x

1 comment:

  1. Hi there!
    Thanks for sharing my post about attitudes, I guess the experiences are the same the world over.
    All the best to you all in Virginia from us here in Ireland


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