How to be a mind reader

fullsizerender.jpgWho is this ‘not-so’ little girl in front of me?

She’s Tilly of course, my daughter, but who is she?  What goes on in that complicated brain of hers?  When she isn’t ‘present’ in our world, where does her mind go?  What does she think about?  She can’t speak, but does she have an internal commentary, a silent dialogue with herself, that I’m not party to?  Is she able to create words in her head, but unable to vocalize them?

How does she feel when she sits in the bath, her favourite activity, splashing the water?  Is she trying to create more bubbles, or is she simply fascinated with the way the water moves?  How it looks as it changes when it’s splashed on the side of the bath, or on her skin, or thrown over the side?

I’d love to know what goes on in her head when I play certain music to her – songs that are slow and melodic, the type that help to ease stress.  Does she find them as relaxing as I do?  She can become so absorbed in them that she looks into the distance and, other than the occasional twitch of her fingers or toes, looks entranced and utterly relaxed.  Does she feel the intended effect of the music, or is this one of those episodes when she’s drifted off into her own little world, unaware of the music or her surroundings?

When her brother plays with her and looks her in the eye to tell her or ask her something, is there a part of her that wishes she had the ability to answer his question or to tell him something about their game or their day?  Does she feel sad that she can’t have a reciprocal conversation with him?

Does Tilly feel the frustration (I think) I see in her when she attempts to play a game, such as a jigsaw, and can’t put the pieces together?  Or am I projecting my own frustration on her?  The smile on her face and the eye contact she makes when she succeeds at something tells me that she shares my joy of her success.  But does that work the other way?  Does she understand when she is unable to do something or does she just move onto the next activity without giving the first a second thought?

I’m asking myself these questions because today, rather than jump out of the car when Tilly & I arrived home from school, we sat for a few minutes listening to the music I was playing (Holocene by Bon Iver and Wait by M83 for anyone who is interested).  I watched her.  Then when I put her into the bath, I didn’t walk into her bedroom to tidy up and listen to her splashing from a distance.  I watched her.

As I’m sure so many of us are guilty of,  I spend too much time just ‘doing’, without actually stopping for a moment to look at the here and now.  Mindfulness I believe it’s called – something I’ve tried several times and failed at!!

But our children are growing up so fast, and there is so much I’m not really ‘taking in’.

For her brother, it’s about enjoying the innocence he still has and listening to the stories from his wild imagination, or hearing him talk to his cars and toys as if he’s recording his own ‘YouTube’ video.

For Tilly, its about learning more about who she is rather than seeing her as my daughter with the additional needs that I need to fight and campaign for.  She is a person, with a wonderful little personality, but there is so much more that I can learn about her if I just stop and watch her more often.

Here’s to more watching and listening, and less running around and doing!


It’s sometimes a difficult journey

I’m the mum of a child with special needs, and I struggle with depression.

It’s not easy to admit that, but to be honest, I’m tired of hiding it.  Because truth be told, it’s exhausting; I’m 8 years into this journey and though I have had many good times, and try to remain positive, I have also had plenty of bad times which leave me struggling to get up in the morning and face the day.

I’m currently going through a low period, so I thought it would be a good time to write an open and honest post about why I’m struggling, in the hope that it will help clear the dark clouds hovering over me, and so that it can perhaps help others to talk about their feelings too.

Firstly, I don’t want you to think that I’m depressed because I have a daughter with special needs.  I accepted that a long time ago, and feel thankful that I have such a special bond with my strong, beautiful and courageous little girl.  Nor am I depressed because this life isn’t the one I thought (pre-children) that I’d be living.

I believe that I’m depressed because I’m actually emotionally and physically knackered! Don’t get me wrong, I know that parenting in itself has that affect on almost every parent or carer out there.  But there is a big difference between my parenting experience for Elliot and for Tilly.  It’s not only that she is harder work because she still wears nappies; needs help to get in/out of the bath/car/bed; can’t communicate her needs and wants easily; and needs constant supervision.  It’s that I rarely get a chance to have a sustained period of not thinking about the next battle I have to fight for her….or the next appointment or meeting I have to attend to discuss her…or the next report I have to read…or the next form I have to complete…or researching the latest therapy we should try.

It’s the things that draw you into an internal battle between your emotions and your duties to be your child’s advocate – a constant pushing and pulling scenario that, after several weeks of the same, can leave you rather broken.

That has been life for the last few months.  A lot of the enjoyment from being Tilly’s mum has been removed, or at least bruised, because I’ve had so many of these battles to deal with.  I’ve been struggling to find the energy to pull myself up, shake myself off and enjoy my journey with Tilly.”

I wrote this a couple of months ago when I was having a tough time.  But I didn’t finish it, and didn’t feel ready to publish it.

But having reread it, I’m reminded of how difficult life on this journey can sometimes be.  And I do want to share it now.  Because it’s not always that difficult.

Right now, it’s not all that bad (touches her wooden table for luck).  We’ve had a lovely Christmas break, Tilly and her brother have been playing together more than ever, she’s been going through a fun (but mischevious!!!) stage, and many of the fights I had to embark on have been won…more will follow on that soon.

I’m at a stage in our life where I’ve started to focus on myself a bit more.  I’m enjoying fitness again, which was always a big part of my life and is a great tool for helping me deal with depression, but was put on hold when Tilly was born.  I’m also not having to attend meetings and appointments several times a week and actually have some free time.  So I’ve taken the plunge and have signed up to study for 6 months in preparation for my grand entrance to the world of employment again.

There will be tough times and battles to be won again – life has a funny way of throwing the bad stuff at you – but the longer this journey goes on, the more armour and ammunition I am building up so that the battles will be easier to fight.