Tuesday 22 November 2011


A little while ago my husband looked closely at my face and said: “Let’s go away for a few days.”

Now I am walking along a coastal path with him, holding Betty, who is pressing her face to mine, imparting sticky, snotty kisses while with both hands clutching at the wind in her hair. A seagull flies low overhead and we look up and she laughs to see its downy belly and yellow feet. I feel her arms around my neck and her feet in little boots kicking my hips while I fold my arms under her bottom. Her tiny white sharp teeth and rosy tongue are those of a little animal. I realise how much I adore her and I feel a sudden terrible pang for Grace.

We have left our older children – Grace and her step-brothers J and D -- with their other parents, our former partners – such a modern family, we – and have run away, mid-week, mid-November, mid-term. We are staying on an island on the Atlantic coast in a tiny, exquisite jewel of a house which belongs to a friend of my husband. It is decorated in shades of mushroom and oyster and duck-egg blue. The brass-framed beds are heaped with ivory quilts and white lace cushions. A row of dearly dented copper pans twinkle in the postage-stamp sized kitchen. On one wall is a limited edition black and white photograph of a very young Brigitte Bardot, all hair and mouth. Betty stands in front of it and points and says: “Grace.”

That night, in the bedroom we are all sharing I listen to Betty chatter in her sleep: alternately sunny and stern and anxious. I get up four times to stroke her cheek and smooth her hair when her murmurings take on a more plaintive tone. When I get up the next morning I drink two mugs of hot bitter coffee so strong that it leaves a dry residue on my teeth. Then I go for a run. I have to do seven miles: marathon training starts for real in two weeks and I have to keep up a basic level of fitness. My eyes look like poached eggs and my gait is shambolic after five minutes. My husband pedals alongside me on a rented bicycle with Betty grinning from the back seat beneath a helmet that makes her look like a mushroom.

It is a glorious morning. The sun is bright and the dark blue sea flutters and glitters to my right as I crunch along the white gravel path. The air is sharp with the tang of seaweed and oyster beds. We pass bushes of grey-green foliage. It is almost not credible that we are six weeks from Christmas. I am sweating in my running top and struggling for air. I force myself to run straighter, more upright. I clench my stomach muscles and move my arms like pistons. At elbow height Betty continues to smile cheerily at me. I push away thoughts of how on earth I will keep this up for 26 miles and try to live in the present.

London – dark, cold, rainy, with the hole in our bedroom window and our condemned boiler and my file spilling out reports on Grace -- seems a lifetime away. We are flat broke, but we broke into our savings and bought budget airline tickets to get here. I feel worried and guilty thinking about the money we have spent, that we can scarce afford, to get away from the lifestyle that we can scarce keep up. I think of the cost of Grace’s birthday party in three weeks’ time. I think of Grace. I have left the coast road and am running past white walled streets and out across long flat vineyards where orange leaves tremble on the breeze. My husband calls out exclamations of enjoyment at the day, at the scenery, at the buildings and landscape. We pass a cluster of old men pointing giant, ancient shotguns into a copse where unfortunate fowl are hiding. A little later, we pass a church where Mass is just ending and the last strains of plainsong enchant us.

There is no television in the house and no phone or internet reception. That evening we listen to music and drink wine and watch candles flicker on the exposed sandstone bricks of the sitting room. I am very happy and very in love and I cannot shake the guilt of being here without Grace instead of being there to pick her up from school and ask questions about her day with a casualness that belies an intense anxiety and a mental check-list of how she did in lessons, in the playground, at lunchtime, now. My husband listens patiently while I stutter to him how I am feeling. Gently he tries to tell me in a nice way that it’s not all about me, actually. That I am doing what I can and that I can only do that and that she is getting on fine and that she’s with her dad and things are progressing and that I should give myself a break.

But still, the guilt insinuates itself into my enjoyment of this enchanting place.

The next day Betty is in a grotty mood when she wakes from her afternoon nap. She plays with her dollies on the sofa, trying to cover them up and tuck them in with a blanket that is far too big. Her movements are jerky with impatience and she is muttering under her breath. I listen in and realise she is saying: “fucksake” in exactly my tones. I am mortified and guilty all over again. Is this what I am? A muttering, cursing grouch? I am red with shame while my husband stifles laughter. Ridiculously, the guilt has become yet another thing to feel worried and resentful  -- and guilty -- about. I must find a way to break free of it.

We go for a drive as the sun is setting, our little rental Renault belting along narrow roads the length of the island. Suddenly we leave a cluster of buildings and shoot out into miles and miles of salt flats silently reflecting the damson twilight. The land seems vast and endless; the skies stretch above and around and they are all there is. I feel tiny and insignificant. Finally, I can breathe.


  1. Put on your own oxygen mask before helping others

    Sophie, sweetie, you do not need to feel guilty. I understand why you would feel that way and it’s very natural (I’m a bit of a guilt-expert myself), but in true aspie-fashion, I will try to out-logic you.

    Parents of spectrum kids tend to have incredibly stressful lives. Therefore, it’s really, really important to take care of yourself. Like the aeroplane advice, you must put on your own oxygen mask before helping others, for essentially the same reason. A mother conked out on a plane floor cannot help her child. A stressed-out, tired, miserable parent is not going to be very much use to their aspie. Therefore, whatever is good for you is, by definition, good for Grace. This means:

    You are allowed to be in love.

    You are allowed to be happy.

    You are allowed to enjoy all the good things in your life.

    You are allowed to have some time out.

    You are not the only person responsible for Grace. You might well be the most effective person and her most important person. But you are not the only person. It is not all down to you. There is Grace’s father for a start. And it takes a community to grow a child. You might be extra-competent. But that does not make you extra-responsible.

    When it comes to my very special people, I have found that it’s all about the quality of time, not the quantity of it. Fifteen minutes with my favourite person in the world is more valuable, transformative, healing and useful than eight hours with anyone else. This is very lucky, because I share my favourite person with an awful lot of other people. We aspies do need a lot of support, and probably most of us don’t get all the help that we would ideally like, because this would put an impossible strain on those few people who “get us” and who we really, really need. Perhaps it’s even okay that we don’t get all the support we would like, because this allows us to practice what you teach us and to develop our own inner strength and resilience. We are very sensitive, very vulnerable for so many reasons and life can hurt us very much indeed. But we also have a very strong inner core, which allows us to withstand things that would make other people crumble.

    You can think of us as being on a long leash tied to your heart. No leash at all – now that’s a problem. Been there, done that. But a long leash, where you are not always with us but we can use the leash to find our way back to you... that’s okay. That’s enough. That’s safe. I’m not a kid anymore, at least chronologically if not inside, so my leash can be longer than Grace’s. But I do think the same principle applies. And this does mean that you are allowed things like some time out.


  2. ...cont

    Some parents of spectrum kids don’t feel loved by their kid in any way that they can recognise and therefore decide not to love their kid (after all, they never signed up for this kind of parenting did they?) and, believe it or not, some even physically abuse their kid. These parents have a good reason to feel guilty. You, on the other hand, do not. You are very special and rare and talented with Grace. You are not, in fact, guilty; whatever you may or may not feel. Not guilty.

    If you spend your time away from Grace worrying and feeling guilty, whilst very understandable, that doesn’t make a lot of sense. Your worry and concern when you are not there cannot make any positive difference. It’s self-torture, for no benefit and a potential non-benefit if you come back to her stressed instead of refreshed. Instead, be at peace in the knowledge that you can deal with whatever the situation turns out to be (good or bad), when you get back. Sometimes the situation will be very bad indeed. But the time to deal with that is when that situation comes to pass. Not beforehand, worrying about a hypothetical situation that has not yet happened. Just know that you can deal with whatever it is, when it happens, because you are talented, very empathic, intelligent and you have all the emotional skills that you need. Everything is fixable. I’m a very bashed-up person but I’m now finding that even my damage is fixable. This means I can go away on my long leash, experiment, take risks, screw things up, sometimes succeed beyond my imaginings, other times get misunderstood, offend people and get even more bashed about, and I can feel safe because I know who to come back to, and that they will, without any doubt, put me back together again. You are that sort of person for Grace. So it’s okay for you to have fun and to enjoy your life, because you can make whatever does happen all right again afterwards.

    So, in conclusion, you can feel guilty if you want. But I really wouldn’t bother : ) And as for feeling guilty about feeling guilty – well that’s a very impressive mental state! But I wouldn’t bother with that one either...

    Love Debi xxx


  3. PS. If any of the above looked like empathy, well it obviously cannot have been because people with Asperger Syndrome don't have any empathy. A much more likely explanation is that I have managed to hypnotise you through your computer screen.

    Could this be sarcasm? No, people with Asperger Syndrome cannot recognise sarcasm, let alone use it, so it must be literal...

    Debi xxx

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