Choices and words of wisdom (ahem)

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

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About museandchat

Busy woman, 45, feminist, married, one daughter, wannabe PhD, discovering new sides to myself all the time! Proud mum of a daughter with Dandy Walker Syndrome, community activist, passionate about history, love to read, write, cook, garden and craft.

Posted on January 18, 2012, in Parenting, Special Needs. Bookmark the permalink. 12 Comments.

  1. Excellently written blog, I too hate those comments too

  2. Some people come out with such stupid comments. A great blog post x

  3. I love your blog!!! I too am a Mum(41) of a 16 year old teenager with a severe physical disability!! I have 3 other children too!! I can relate to so much you have written above!! I wish I could say I was only sometimes frazzled and occasionally snappy!!! It is the silly things that make you mad especially from people you think that should know better. I wish there was more awareness about disability. I think it should be a part of the curriculum, not a taboo subject!!!
    Wishing you lots of happiness with Fionnuala!

    • Hi Lorraine,
      Thanks for your lovely comments – yes making disability awareness part of the curriculum would be a huge step forward. Not going to hold my breath though – hope all well with you and your family.
      Cheers,
      Tracey

  4. That is so true, schools could teach children some skills in interacting with others who are in wheelchairs or who have obvious disabilities, oftentimes people say things with no thought process put into their words. I had all those things said to me when I was pregnant and knew our child was sick, you’re great and so on, but as you say the reality is that disability and illness happen to every imaginable type of person and they all deal with it in different ways, some better than others. Your ideas of what to say are perfect and if people were educated as to what to say and do I think a lot of hurt feelings could be averted. Great post!!

  5. No-one seems to understand unless they’re living with it unfortunately. Even my best friends and family will on the one hand tell me I’m amazing, then on the other tell me how much free time I have while the kids are in school – failing to understand everything that I have to fit in during those hours…

  6. I used to be one of those people saying those things. Now im a Mum and my eldest has Autism and I get to hear those comments. They drive me nuts at times even though I know people are just trying to find something to say that they think will be supportive. Comments such as “sure he doesnt look Autistic” or “is it because you breastfed for too long” do not help!!

  7. I’m also constantly irritated by the notion I did something special that made me ‘deserving’ of a special needs child, rather than just it being an unfortunate mix of genes. Thank you for speaking out honestly on the subject. We muddle through like everyone else in this world. I understand the comment is meant to offer comfort, but to me, it doesn’t. Of course I’ve also had the opposite end of the scale, “You must have done something awful to deserve this punishment.” I try to explain it’s neither a punishment nor a gift. It simply is what it is.

  8. Very intreresting blog. It was very relavant. I was looking exaxtly for this. Thank you for your effort. I hope you will write more such useful posts.

  9. This article has helped me tremendously! I have said these comments, not out of spite, just to fill a gap in the conversation and to somehow express (very Poorly) how sorry I am that my friends have this similar heartache..I will from now on, grab their hand or hug them, give them a smile and offer to help in any way I can but most importantly, keep my mouth closed!! Thank you for letting me know that I had hurt someone with my stumbling words..

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