How long does it take to make a judgement about someone? Almost no time at all. We see them and instantaneously we have them pigeon-holed. Fat, middleclass, expensive hair, worried, ugly, gorgeous, nice shoes, fanciable, not fanciable, haughty, trashy..........Usually we either instintively feel good about someone or bad. We are comfortable in their presence, or not. We want to be nearer or keep our distance....our radar is constantly on the alert.
What about our children? How long does it take for people to make a judgement about them? Almost no time at all. They are the ones who are screaming in the supermarket, pulling down their pants in public, saying out loud "that lady's got a big belly". They are the ones standing too close to the next person in line, grabbing a spade in the sandpit, staring at the shop assistant. And the judgements? Naughty child, bad mother, she makes me uncomfortable, can't they control him? And we feel bad.
When someone has a visible disability, we see it instantly.
When someone has autism, we don't, but we still make a judgement.
When I am out with my daughter, I hold her hand. Why? She is fifteen and she is not a runner. I don't need to hold her hand. But I do. It took some soul searching to understand why I do this. I would like to think that I do it for safety. Well, partly, when we cross the road. Perhaps I just never got out of the habit from when she was little? Possibly, but that's not all. I realise I do it mainly so that people have an instant filter when they see us. "Teenage girl ... looks normal ....but having her hand held by woman old enough to be her Mother.... must have something wrong with her.......I feel ....disdain/compassion/understanding/distanced......"
It works. I reckon it takes about a second and a half for "the dawning". As soon as the "this person is different" thought kicks in, we are in differnt territory. I am lucky. We live in a small town so usually that territory means kindness and allowances made for her "oddness".
But what for the children who look "normal" but who are simply unable to act "normal".
There is no "dawning", just judgement.
And it is a brave parent who can cope with that.
Thursday, 24 July 2008
Sunday, 13 July 2008
Why Won't the Sun come out?
I live in the North of Scotland. It is very beautiful. Tourists come from all over the world to enjoy our Highland scenery. There is only one problem, (don't tell the Tourist Board...)
The sun doesn't shine. The sun doesn't shine in the Winter - that's OK, I don't expect it to. The sun doesn't shine in the Spring or Autumn - well, it does a bit, but allow me a bit of poetic licence.
The PROBLEM is that the sun doesn't shine in the Summer. Never. Not one tiny incy bit. Not a sliver of hope peeps out from behind those grey clouds. At least that's what it feels like, and as far as I'm concerned, that's my reality. And what happens when its Summer and the sun doesn't shine? I get in a mood.
Summer sunless mood = "I can't cope......", "I wish my life was easier......", (ssh.....whisper this one), "I wish my daughter was normal so we could have proper holidays....." and creeping up behind my ears, my old friend, "Its not fair...." And all because of the weather!
But here's the thing, I don't think I'm the only one thinking these thoughts. I know for a fact, because I have friends worldwide who share these things, that there are people in Arizona and Australia, India and Indiana, who also have these thoughts. Perhaps not exactly the same, but similar, "wish it were different", "its too much" thoughts. Mmm. But its sunny in their summer! If I'm feeling bad because its not sunny, shouldn't they be feeling fabulous in their sun-drenched climes?
Perhaps I have to face it, again. Its not the sun, or lack of it. Its me. I am making myself feel bad. I am creating my own reality.
So my thought for today is,
"I can choose to be happy whether the sun shines or not."
I feel better already.
The sun doesn't shine. The sun doesn't shine in the Winter - that's OK, I don't expect it to. The sun doesn't shine in the Spring or Autumn - well, it does a bit, but allow me a bit of poetic licence.
The PROBLEM is that the sun doesn't shine in the Summer. Never. Not one tiny incy bit. Not a sliver of hope peeps out from behind those grey clouds. At least that's what it feels like, and as far as I'm concerned, that's my reality. And what happens when its Summer and the sun doesn't shine? I get in a mood.
Summer sunless mood = "I can't cope......", "I wish my life was easier......", (ssh.....whisper this one), "I wish my daughter was normal so we could have proper holidays....." and creeping up behind my ears, my old friend, "Its not fair...." And all because of the weather!
But here's the thing, I don't think I'm the only one thinking these thoughts. I know for a fact, because I have friends worldwide who share these things, that there are people in Arizona and Australia, India and Indiana, who also have these thoughts. Perhaps not exactly the same, but similar, "wish it were different", "its too much" thoughts. Mmm. But its sunny in their summer! If I'm feeling bad because its not sunny, shouldn't they be feeling fabulous in their sun-drenched climes?
Perhaps I have to face it, again. Its not the sun, or lack of it. Its me. I am making myself feel bad. I am creating my own reality.
So my thought for today is,
"I can choose to be happy whether the sun shines or not."
I feel better already.
Tuesday, 8 July 2008
The Day I Lost My Daughter
Actually, I didn't lose her- but it felt like I did.
How?
For the first time in many, many years, she was away from home. Not just for the day, but for the night, five nights in all. What to do with myself? In the morning, I padded by her bedroon quietly, so as not to wake her. Wake her? She wasn't even there. When I walked up the street, I kept expecting the feel of her hand in mine. It was strangely empty.
After about the 4th time this jolt of emptiness came to me, I realised why this was familiar. It was the same as after my Mother died- the oh so familiar just wasn't there. I had lost my daughter.
At the same time, my other daughter, my neuro-typical daughter, was also away from home. As it happens, for 3 months, not for 5 nights. But did I miss her in the same way? No. Not that I didn't miss her- an empty nest is an empty nest. But not in the same way. I trust that although my eldest daughter will always need her home, her path is to journey out into the world on her own. That's what growing up is all about. I trust that process. But it seems that with a "special needs" child, the umbilical chord is much stronger, or at any rate, twists in a different way.
When one has a child dependent on one, hour after hour, day after day, week in, week out, one becomes part of that child and s/he becomes part of us.
When s/he is away, who is really lost? Her or me?
How?
For the first time in many, many years, she was away from home. Not just for the day, but for the night, five nights in all. What to do with myself? In the morning, I padded by her bedroon quietly, so as not to wake her. Wake her? She wasn't even there. When I walked up the street, I kept expecting the feel of her hand in mine. It was strangely empty.
After about the 4th time this jolt of emptiness came to me, I realised why this was familiar. It was the same as after my Mother died- the oh so familiar just wasn't there. I had lost my daughter.
At the same time, my other daughter, my neuro-typical daughter, was also away from home. As it happens, for 3 months, not for 5 nights. But did I miss her in the same way? No. Not that I didn't miss her- an empty nest is an empty nest. But not in the same way. I trust that although my eldest daughter will always need her home, her path is to journey out into the world on her own. That's what growing up is all about. I trust that process. But it seems that with a "special needs" child, the umbilical chord is much stronger, or at any rate, twists in a different way.
When one has a child dependent on one, hour after hour, day after day, week in, week out, one becomes part of that child and s/he becomes part of us.
When s/he is away, who is really lost? Her or me?
Saturday, 5 July 2008
The Fishing trip
Today I went fishing in the ocean of the Internet.
Hour upon hour trawling autism sites, forums, groups, seeing who is out there in the world.
My haul was huge, we are huge.
Whole shoals of moans and groans, piranhas of no hopers, a sea of exhaustion and despair. My net caught children lonely in the playground, standing on the edge, year after year, with their parents weeping enough salt tears to make a new ocean.
Of course there were flying fish, shimmering streaks of silver stories, a smile here, a word there, but not very many.
All over the world, parents are going to bed exhausted- too many battles, so little help.
Perhaps I won't go fishing again for a while.
Hour upon hour trawling autism sites, forums, groups, seeing who is out there in the world.
My haul was huge, we are huge.
Whole shoals of moans and groans, piranhas of no hopers, a sea of exhaustion and despair. My net caught children lonely in the playground, standing on the edge, year after year, with their parents weeping enough salt tears to make a new ocean.
Of course there were flying fish, shimmering streaks of silver stories, a smile here, a word there, but not very many.
All over the world, parents are going to bed exhausted- too many battles, so little help.
Perhaps I won't go fishing again for a while.
Friday, 4 July 2008
Heaven and Hell
Today I finished the final day of an amazing 6 day dance workshop.....
At one time, I felt so alone and so lonely all I could do was weep. After a while, another dancer came up to me and joined me in my dance until I had moved through the emotion and was joyful again.
Another time, I was feeling so vibrant and alive, I couldn't imagine ever feeling bad again- until a partner closed their eyes all the way through an exercise about connection, and I immediately felt separated and judgemental again.
The name of the workshop? "Heaven and Hell".
The swing of the pendulum from that which feels good to that which feels bad and how we always want the "good" and shy away from the "bad".
Isn't that how we are with our children? When we have a child with special needs, we are desparate for the good days, the possibility of "cure", the times when we are loving and accepting. And yet the reality is there are many "bad" days when everything is too much, when we believe there is no hope and we are angry and resentful. And we beat ourselves up, thinking we should be "good parents", all the time.....
In our class, we learnt to find our centres, literally how to find the calm place of equilibrium between Heaven and Hell. How? By not shying away from the "good" or the "bad", but to feel it equally and honour it and allow the acceptance to bring open heart.
If it works so well in a dance class, how would it be to accept ourselves and our children exactly as we are, "good days" and "bad days" and learn to love it all anyway.
How would it be to accept our own Heaven and Hell?
At one time, I felt so alone and so lonely all I could do was weep. After a while, another dancer came up to me and joined me in my dance until I had moved through the emotion and was joyful again.
Another time, I was feeling so vibrant and alive, I couldn't imagine ever feeling bad again- until a partner closed their eyes all the way through an exercise about connection, and I immediately felt separated and judgemental again.
The name of the workshop? "Heaven and Hell".
The swing of the pendulum from that which feels good to that which feels bad and how we always want the "good" and shy away from the "bad".
Isn't that how we are with our children? When we have a child with special needs, we are desparate for the good days, the possibility of "cure", the times when we are loving and accepting. And yet the reality is there are many "bad" days when everything is too much, when we believe there is no hope and we are angry and resentful. And we beat ourselves up, thinking we should be "good parents", all the time.....
In our class, we learnt to find our centres, literally how to find the calm place of equilibrium between Heaven and Hell. How? By not shying away from the "good" or the "bad", but to feel it equally and honour it and allow the acceptance to bring open heart.
If it works so well in a dance class, how would it be to accept ourselves and our children exactly as we are, "good days" and "bad days" and learn to love it all anyway.
How would it be to accept our own Heaven and Hell?
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