Monday 19 May 2014

Climbing Everest

I wrote this post nearly two years ago. It's still so, so true - and describes why mums of children with additional needs often feel so isolated.

Today it all really got to me.

Several times this summer we have tried to see friends and be sociable. Not just for the children - for me too, this parenting lark can (as a close friend astutely pointed out last week) be a lonely business. Particularly when you have a child with additional needs. Or two. Or three. But after today I think I will be focussing on the positives and staying home.


It's not that I'm "fed up" with all the issues, (well, I am a bit!!) or that I'm having a self-pitying moment, it goes deeper to be honest. It's hard to describe... which is precisely the problem. HOW do you describe to others the difficulties daily life presents, how normal activities are nigh on impossible some days - so challenging you just want to curl up and not try? That might sound defeatist, but it's this growing chasm of experience which is having such a profound impact, in many ways I feel so far distanced from the majority of parents on a daily basis.

Take yesterday.

A lovely picnic with school friends of K and A before term starts. To start with it seemed straightforward.

  • It was a weekend, so H (who is currently in non-stop meltdown as the new term approaches) could be left with Richard at home.
  • Since it was a picnic the twins should not feel "different" with their food as everyone would be taking their own sandwiches, right?

But kids inevitably share so we had to read sweet labels and draw at least some attention to ourselves. (quietly!) Then the new Mum in the class wanted to know why my two couldn't eat certain things... and didn't understand why intolerances didn't mean small amounts were OK and how their "gut allergies" differ from immediate ones. I mean, why would she? It's not like I'm an expert on anything my kids don't have, if it's outside your world experience you can be forgiven for not knowing.

But that just makes the gap wider. And deeper.


There followed the usual toe curling and futile attempt to give the minimum information about a complex and little known disease and swiftly change the subject! My attempt to downplay the food allergy thing ended with A white as a little ghost telling me his tummy hurt and that he needed to go home -so home we went, to sit on a familiar loo with his favourite cuddly for comfort.

You might think that's no big deal. And I guess it isn't, except that's not a one-off - and neither is it our only issue. Every attempt to leave the house with H and any other combination of children is always almost impossible. And staying at home and having friends here can be even worse! Somedays I think a paper bag over my head could come in really handy when out - because so many people think that it's poor parenting that causes ASD/ADHD behaviours. I've actually been told as much more than once. I've even been told I shouldn't have been allowed children after H because I couldn't control his behaviour. (And not by a paid up member of the BNP...) Even family suggest it is somehow "my fault" for having four children - which is totally missing the point because crystal balls are not yet standard issue or remotely reliable.

It's undoubtedly the combination of issues which I find so challenging and others so difficult to comprehend. Many families have a child with difficulties of some sort, and problems FAR more severe than any one of my children. When I see the suffering of some of the children I know and the challenges their parents face I do feel very blessed. But nonetheless on a daily basis I find myself increasingly dwelling on the same question. Just what are the chances of everyone in one family having the same gastrointestinal problems (to some extent), of two of my children needing strong unlicensed medication to keep them well? AND of having a child on the Autism Spectrum, with ADHD and other issues? It's not exactly that likely, is it?? How many other mums spent the last day of the holidays writing three sets of medical notes for school, getting three sets of medication ready? It's actually quite embarrassing, because it doesn't make sense to us either.

And if I don't "get it", what chance is there of anyone else understanding? The GP certainly doesn't, challenging every clinic letter, every prescription. Sadly denial doesn't work as a useful panacea, I wish it did! Our disabilities might be largely invisible, but I cannot deny their existence. I've tried this, many times, because this wasn't in the Plan. I didn't ever imagine any of my children would ever be anything short of or more than "normal". But the Plan somehow got changed, and the reality is there is a huge part of my life I cannot share with the vast majority of my friends, which increasingly takes over and prevents the rest of life happening as it should. It's isolating, restricting, frustrating and at times desperately heartbreaking.

Which is why, for a little while at least I'm retrenching. Retreating from daily social interaction I can avoid. Sometimes the effort before and despair after doesn't make the attempt worthwhile, and it can be as valuable to enjoy and value what comes easily rather than climbing Everest everyday. The children return to school over the next couple of days and I'm going to do all the mundane, safe and easy non-sociable things on my agenda.

Staying at Base Camp is sometimes more important than aiming for every summit.

22 comments:

  1. dont feel like your the only one hun, we all feel that sometimes, beating them and getting past the issues that are in the way of moving forward are the issues we find somehow hard or difficult at times butits always possible chin up hun x

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    1. Oh I know - that's the point, I'm not the only one, but too many of us feel like that pretty frequently I think. Thanks x

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  2. It must be so difficult for you to have children with a variety of different needs, I can't offer any advice other than I am sure you are doing a brilliant job and try and not it get you down.

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  3. Bringing up children can feel like climbing a mountain at the best of times, let alone when you have special needs that you also have to deal with. Sometimes we have to just step back to help us gain focus and control again. x

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  4. I find bringing up any child hardwork. TBH it is all or nothing for me, parenting doesn't seem to have any middle ground.

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  5. I cant really give you any advice, but I'm sure you do your best to look after your your children, just carry on doing your job and maybe pay less attention to those who question your methods

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  6. I'm sure you do a great job. I find it difficult sometimes and I only have one little one. You have a lot to manage, so give yourself a bit more credit x

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  7. I wish I could give you any advice, the only thing I can do is send you a big hug! Do what you thing is best for you and your kids, even if this means loads of weird looks or questions, by the end of the day your family happiness is the most important thing ;)

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  8. I agree, you know what your children need and are doing a great job on their behalf. I hope you can find something that gives you a little 'me' time though as every mum needs a little escape occasionally.

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  9. Oh this sounds so difficult for you - I can't imagine how hard it must be, dealing with the logisitics of children who have extra needs, not to mention the emotional challenges. I hope that blogging helps - don't forget, we're all here to support you in whatever way we can.

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  10. You certainly have a lot to deal with. I'm so sorry that you have so many issues to handle but you write about your experiences very well and I hope that doing so helps, a little. If it's any comfort, I think we all feel like holing up at home sometimes.

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  11. You are doing a great job and remember, tomorrow is another day. I'm sorry to hear that people can be so ignorant at times. Some times people struggle with what is different to the norm - it shouldn't be that way I know. But you sound like are doing an amazing job. You should be super proud of yourself and your family.

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  12. Gosh that sounds so hard and your poor little one with his tummy ache if he eats something that triggers his allergies :( I know this doesn't even come close to what you're going through but we always have to check ingredients as we're vegetarian and people have given me some really strange looks about it. I'm trying to get less sensitive about it but I hate making ourselves stand out as being different. I hope things are getting easier now - parenting is always so full of ups and downs isn't it?

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  13. I cannot imagine how difficult it is for you, I think we are struggle from time to time!

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  14. thanks so much for sharing, parenting can be such a struggle at times x

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  15. I'm so sorry you feel like this; parenting is so difficult and heart wrenching at times. I can't imagine being in your situation, I really feel for you.

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  16. You are doing such an amazing job. I don't know how i would cope in your situation. You are an inspiration x

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  17. You're doing a brilliant job but parenting is hard work so it's no surprise you have difficult times. Especially when you do what you do every day. It must be exhausting. You are amazing though and as Keri-Anne put it an inspiration to many too :)

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  18. **huge hugs** you do such an amazing job, I wouldn't know where to start in your situation. x

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  19. I am unable to put myself in your shoes...
    After reading your blog for a while now I think you are a wonderful woman and doing a great job, so just keep your head up and keep going

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  20. You have such vast inner strength to keep marching forwards, doing what is best for your children. It can be very lonely and isolating when you have children who differ from 'normal expectations'. You are doing an astounding job x

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  21. It sounds to me like you are doing a brilliant job with your children. People have no right to judge you, but at the same time, just like you said, they do not know what it is like to live with children who have intolerances or are on the Autistic Spectrum. As much as climbing mountains and making every effort to socialise sounds exciting, you are right. Staying at home and enjoying the little things together, following a routine must be much easier and far less stressful. Great post. Mel

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Many thanks for taking the time to comment, I really value your responses.

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