Friday, 31 December 2010

How Was Your 2010?

So, it's the last day of the year. How will you remember 2010? Was it a rollercoaster of fun and frolics or really just a bit blah?

I have to confess that for me, it's been an odd one. I've not really touched on this much because people who know me *in real life* read this. But, I have sometimes struggled with being a parent to a disabled child.

When Lyla was diagnosed with autism two and a half years ago, I was exhausted from dealing with her challenging behaviour and getting no sleep. Plus, I have a serious hereditary illness, which is progressing and I was (and am) getting more and more anaemic and tired.

The thought that this wasn't just an extended toddlerhood, but a condition where I may never get a reprieve nearly finished me off mentally. I'd been running on empty, assuming that things would pick up someday soon.

How foolish!

In the first days after the diagnosis, my first thought every morning were 'How am I going to get up and put up with the violence today and then start all over again tomorrow? This is too much. I'm miserable. I don't want to wake up anymore'.

This was quite a bleak time and I made the decision that if I was going to cope I would have to take antidepressants. I was under such unbearable stress, had no help and I thought this would probably be the only way I could cope.

Around this time, I also collapsed from a stomach ulcer and other stress-related illnesses, which I'm sure were related to the shock of coping.

So this was all way back in 2008.

I find it quite hard to convince people that I've suffered from depression- I think I'm one of the people that doctors call a 'happy depressive'- somebody who looks fine, has a smile on their face and does their best to carry on as normal, but inside is going quietly mental.

I carried on, tried my best to understand autism and find a way to help Lyla with her behaviour. Things improved and in early summer 2010, I decided to stop taking the tablets.

This wasn't as easy as I'd hoped:  the autism hasn't gone away.  And I had two years worth of pent-up grieving that'd been put on hold whilst I was in the coping-zone.

This had to come out, but eventually the tears stopped and I've started to appreciate what wonderful children I have.

I also came to a realisation that half the time I thought I was miserable, I was actually just exhausted- I needed to DO LESS.

But family-life and doing less doesn't happen on it's own- it has to be a conscious choice.

For autism mums particularly, there's a big pressure to 'help' your child and not just in conventional terms (like Social Stories, Pecs symbols, speech therapy exercises, OT exercises, medication, changing the way you speak to and teach your child, which professionals just expect you to do on top of everything else!) but a whole wealth of other therapies like intensive ABA which promise big improvements.

You really need a salaried staff to do all this, but most (actually, probably ALL) mums do it alone. The difficulty is that the more you do, the more you feel you ought to do. And this can become an exhausting vicious circle.

So, however hard this is, in 2011, I'll be giving myself a bit of time-out from autism.

I'll still be living happily with Lyla, but I need some time to myself, a bit of time to recover from the last seven years.

So how can you do less when you feel that just to do the things you DON'T want to do (laundry, taxiing kids, cooking, cleaning anyone?) there needs to be about five different versions of you buzzing around like worker-bees?

Well, these are some of the things I've started doing:

  1. Bought DVD box sets- cos I HAVE to sit down and watch them now, right?!
  2. Got out a pile of books that fascinate me from the library and put them next to a comfy-chair
  3. Booked in dates with friends to do something fun when I have days off rather than spend the time catching up with the laundry/ shopping/ cleaning/ interminable to-do list
  4. Joined a gym on a cheap off-peak deal, where I can spend a bit of time exercising, but much more importantly spend time SITTING about in their spa
  5. Allowing myself to sit down when I eat lunch, rather than eating on the run
  6. Have a slush-pile for autism correspondence, articles etc which sits there until I feel up to dealing with it
So these are a starting point. No dazzling checklist of acheivements, but I survived 2010! I'm now holding back from bursting into a Gloria Gaynor-inspired chorus at this point....

What do you plan to do in 2011 to keep body and soul together?

Thankyou for supporting the blog in 2010, Wishing you all a Very Happy New Year!!!


  1. I love reading your blog - you're always so wise. One of the things I plan to do in 2011 is spend more time reading blogs - a real emotional lifeline!!

  2. Thank you for being so honest and sharing about your depression. My son was diagnosed with ASD in September and I too just started depression/anxiety meds. Cheers to you for taking the important time for yourself! Your blog is inspirational and I look forward to your postings. Happy 2011!

  3. You are inspiring and so on the button Rachel. I am sending you a BIG hug and lots of love. And please please, if you are able to have some me time on Sat 8th Jan, will you join in with my birthday celebrations? xxxx

  4. Do ALL Mums of children with ASD go on anti-depressants I wonder? I am still on mine, I must admit to being a bit scared to come off them - I think we are aiming for this summer. It took me some time to convince people I needed to go on them as well, always putting on an 'outside' appearance. We had a dreadful start to the year, but things have got better, or at least we are learning to cope better. You have a good list. We have DVD box sets as well, and I must admit that actual sitting down to watch and have a laugh is something that keeps us going at times.

    All the best for 2011 and all that it brings.

  5. The most powerful trait anyone can have is to admit when they need help. Rachel you are so very strong. Living with a life changing condition is one thing, but to also have your child have one too is very very hard.

    Find time for yourself and enjoy it. The world wont stop spinning just because you have taken a time out, something I learned the hard way too.

    I hope 2011 will be a good year for us all.


  6. I got caught up in that vicious circle at one point and then stood back from it, telling everyone that I was his mother and I wanted to be his mother, not his multi-therapist. Yeah, I feel guilty sometimes, but if I get sick then who looks after everyone!! Enjoy your treats and I hope 2011 is a wonderful year for you and your family :) Jen

  7. It hasn't been easy for you, but it will get better. You need time out, just like Lyla does. As mums we often think we're super human, but really we're just human beings trying to live an every day life with all the pitfalls, challenges and obstacles that autism throws at us. But we do cope. We have no choice to cope.

    Take care of yourself. It will get easier.

    CJ xx

  8. Thanks for all your lovely comments- it's so good to know that you relate to this!

    @bbsmum- sounds like an excellent plan!

    @Heather- wishing you a better year this year, it will get easier from now on :)

    @Concetta - yes please!

    @Serenata- LOL!- I wouldn't be at all surprised if this were true, bring on the box-sets!

    @Gemma- thankyou as always for your wise words :)

    @Jen - this is so true Jen, I'm going to keep the word 'multi-therapist' in my head, just in case I go back down the slippery slope! Being a MOTHER is so much more important!

    @CJ Very wise words- I'm most definitely going to take my superwoman cape OFF this year- and BURN it!!!!

    Wishing you All A Fantastic 2011

  9. Thankyou for sharing your thoughts. I also got to the point last year when I felt really unwell and exhausted. Now my son is back in school I'm trying to take a bit more care of myself; I'm gradually feeling stronger but still struggling to break the chocolate habit! So enjoy your break.

  10. My doc doesn't believe in anti depressants and there are times when I wish he did. Like you I plan more me- time in 2011, I need to get out more and take more exercise, but I think I'll still need lots of coffee and chocolate to get me through. Hope 2011 is a good year for you x

  11. Good for you! I hope you will give us an update in a month or so and tell us that you have stuck to the plan and not gotten sucked back in to the autism vortex!

  12. It must be so hard to not just be a mum, but have to be an advote for your child constantly too. I hope 2011 beings you more peace

  13. it's taken me a mo to catch up but here I am. What a great post. You do so unbelievably well Rachel I have the utmost admiration for you. I know the toughness although each of our ASD stuff is different. But I fight back tears and depression and as you know use art for this. I am so happy to have met you and shared some fun time via e-courses, library books, coffee's and more. I am really looking forward to Concetta's craft day and the experimental photo-day and meet up and hope you are coming :)

    I will def come to the spa with you and look forward to more creative adventures in 2011 to cheer ourselves up!

    I am intending to build a super fun art website as part of my MA project that gets myself and others laughing and playing, because I have found these things more tonic than anti-depressants. So much 'rubbish' came out of me from stopping drinking alcohol and the brief brush with anti-depressants this year.

    here's to more fun in 2011 :)



  14. Well done you for your list of things to do and also for taking a huge step and coming off the anti-depressants. I am glad things are looking up for you and you are right you have wonderful children. Enjoy taking time for yourself, even if it is only a quick half hour a day. I have a rocking chair in my kitchen and sit for about 20 minutes when I get up in it, shut away from the rest of the house and have a cup of tea and if I don't get this now for some reason it throws me!

  15. I have an Aspie son, who is transferring to senior school in september and that is weighing on my mind along with a host of other life crap. So today I am going to the drs because I can no longer cope with life as it is.

    You are an inspiration xx

  16. Thanyou- I hope we're all managing to carve out little pockets of space for ourselves somehow and @Claireymck, good luck, I hope things look up for you very soon :)


  17. i m soooo impressed with you
    love your post
    I hear you on simplifying
    Its my resolution too and its not as easy as one would think


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