Tuesday, October 07, 2008

If I Might Say ...

The world was not rent asunder. There was not a crack in the space time continuum. More importantly, Joe survived. As I've written here before, Joe has a 'get in the car and go until goal' approach to driving. Me, I'd like to stop every now and then to see roadside attractions. We are often a bit at odds when on a longish trip. But I announced to Joe on the way through Buffalo on our way to Syracruse that we would be stopping for lunch at Fuddruckers. They have an amazing swiss mushroom veggie burger, I was determined to get out of the car and actually eat at a table. Joe was surprisingly flexible and agreed that, since it was a short drive, we could stop.

After ordering the food, I spotted only one table that would be comfortable to sit at in the wheelchair. It was vacant, so I headed over to the spot to grab it. Ensconced at my place, I took my wheelchair gloves off, set them on the table and then began to look around the restaurant. My eyes finally setted on a family, obviously not one of great means, sitting several tables away. Mother and daughter sat with their backs to me. Father sat facing me.

The daughter seemed to be engrossed in eating her burger, her back was to me, but even then I could see she was not part of the conversation between her parents. It's hard to guess ages from the back but from her height, she'd have had to been in her late teen years. But something was going on. Mother, beside her was constantly touching her, stroking her, twirling her hair, rubbing her back. A constant flow of touch. I can imagine a teen putting up with that for a short while and then becoming irritated. Being irritated is part of the job of a teenager. I swear to heavens, the thought formed in my head before I even saw her face, "I'll bet she has Down Syndrome."

And, when she got up, I saw that she did. There had been something about the touch which was not quite right, not quite natural, for a typical teen. But worse, when mom took a step away, her daughter cried out as if hurt and then dove towards her. She put her mothers arm around her and snuggled her face into her mothers chest. Mother, looking tired, held her briefly. They walked out of the restaurant with her wrapped around her mother.

Because of my reputation as an 'anti touch' guy (which isn't true) formed through my 'Ethics of Touch' training programme; many will already know my thoughts. I think touch is a wonderful thing, it can represent love, affection (yes and lust), it can show concern and caring, it can communicate sorrow shared and compassion offered. It can do a multitude of good things. But it can also do bad things. I don't need to list those.

In this situation it seemed like a young teen with Down Syndrome hadn't experienced the subtle changes that happen in touch between parent and child as they grow. She was stuck at touch for the age of two. It may have served a purpose at one time to reassure her, but now she seemed addicted to it. But it made her less. It made her child like and childish.

Of course I want parents to love their children, hug and hold their children. But I also want parents to recognize that their children are growing up. That their relationship needs to grow and change. That the touch they get them used to now, will be the touch they expect from others later.

Please be aware that your child with a disability needs their relationship with you to grow and change as they get older. They are only an eternal children if parented to be one.

Expectations of your child are vital.

Expectations of yourself, well, now - that's where great parenting begins.


wendy said...
This comment has been removed by the author.
Tony Osgood said...

These situations are so full of personal meaning, and interpretation so difficult, it is easy perhaps to look away, to not comment, to not say, rather than potentially "offend". Thanks for sharing. It reminded me of an old Alden Nolam poem (forgive the terminology- it is of its time)...

I sit down on the floor of a school for the retarded,
a writer of magazine articles accompanying a band
that was met at the door by a child in a man's body
who asked them, 'Are you the surprise they promised us?'
It's Ryan's Fancy, Dermot on guitar,
Fergus on banjo, Denis on penny-whistle.
In the eyes of this audience, they're everybody
who has ever appeared on TV. I've been telling lies
to a boy who cried because his favourite detective
hadn't come with us; I said he had sent his love
and, no, I didn't think he'd mind if I signed his name
to a scrap of paper: when the boy took it, he said,
'Nobody will ever get this away from me',
in the voice, more hopeless than defiant,
of one accustomed to finding that his hiding places
have been discovered, used to having objects snatched
out of his hands. Weeks from now I'll send him
another autograph, this one genuine
in the sense of having been signed by somebody
on the same payroll as the star.
Then I'll feel less ashamed. Now everyone is singing,
'Old MacDonald had a farm,' and I don't know what to do
about the young woman (I call her a woman
because she's twenty-five at least, but think of her
as a little girl, she plays that part so well,
having known no other), about the young woman who
sits down beside me and, as if it were the most natural
thing in the world, rests her head on my shoulder.
It's nine o'clock in the morning, not an hour for music.
And, at the best of times, I'm uncomfortable
in situations where I'm ignorant
of the accepted etiquette: it's one thing
to jump a fence, quite another to blunder
into one in the dark. I look around me
for a teacher to whom to smile out my distress.
They're all busy elsewhere. 'Hold me,' she whispers. 'Hold me.'
I put my arm around her. 'Hold me tighter.'
I do, and she snuggles closer. I half-expect
someone in authority to grab her
or me; I can imagine this being remembered
for ever as the time the sex-crazed writer
publicly fondled the poor retarded girl.
'Hold me,' she says again. What does it matter
what anybody thinks? I put my other arm around her,
rest my chin in her hair, thinking of children
real children, and of how they say it, 'Hold me,'
and of a patient in a geriatric ward
I once heard crying out to his mother, dead
for half a century, 'I'm frightened! Hold me!'
and of a boy-soldier screaming it on the beach
at Dieppe, of Nelson in Hardy's arms,
of Frieda gripping Lawrence's ankle
until he sailed off in his Ship of Death.
It's what we all want, in the end,
to be held, merely to be held,
to be kissed (not necessarily on the lips,
for every touching is a kind of kiss).
She hugs me now, this retarded woman, and I hug her.
We are brother and sister, father and daughter,
mother and son, husband and wife.
We are lovers. We are two human beings
huddled together for a little while by the fire
in the Ice Age, two hundred thousand years ago.

It's easy to be trapped by the chains of love, harder still for parents to actively break them by giving their kids the tools they need.

Thanks again.

Caroline said...

Well said! With a disabled child as with any other, sometimes what they think they need and what they actually need are not the same and a parent's job is to give them roots and wings, it's a slow job and in this case it sounds as though it should have been started some time back. It must be so hard now, especially as Down's people often find routine hard to change - makes you wonder how a marriage survives with a third person literally in the middle of it for the best part of twenty years too..

Heike said...

Yeah, i agree. Letting go is a big part of parenting. However, another thing i have learned is not to judge too quickly by what i see. There might be a "hidden" disability at work. You know, i used to think "why can't that mother control her kid's tantrum" and then you learn about ASD. So maybe this girl had some other issues beyond the visible DS going on.
But then i, you see what you see, and you comment on it. And i find that you, as a non-parent sensitive to disability issues - are a great guide for me to keep the big picture in mind. Thanks again Dave, for a great post.

Eileen Prior said...

Thanks for this one, Dave. I completely agree with what you say...I think for kids with DS, the situation is made more difficult by the fact they are often - literally - the baby of the family. Unfortunately many families keep them that way, preserved for life.

The young person themselves is less likely to resist and - and as you point out - often is effectively addicted to the inappropriate behaviour. I'm all for kisses and cuddles - I do that with all my kids - but respecting personal space comes high on the list too! You'll have guessed I have an 11 year old with DS, so embarking on the teenage years right now!

Thanks again for all your posts, love them

Ettina said...

I felt sure I'd commented on this before, but maybe it was another post I commented on.
I'm a 19 year old who still sits on her mother's lap and cuddles her. And I don't see anything wrong with that.
I have a lot of respect for you, Dave, but one of the biggest problems I see is that you don't tend to consider whether some disabled people may really have different emotional needs.
I am not a typical 19 year old. I am autistic. My parents have not been holding me back by not trying to phase out touch, but simply responding to my own desires, which are different from most 19 year olds. I think it's inappropriate to assume that because someone is acting 'younger' in a certain area, whatever it may be, that means they have not been given the opportunity to grow up. Instead, it may be that they simply are *not* typical in their emotional needs, that they actually do need the kind of things that younger typical kids need but typical people their own age don't.
Where do you get the idea that what is psychologically healthy for everyone should be defined by the normal pattern? That's the same fallacy that contributed to attempts to make gay people straight. As a gay person, presumably you have different emotional needs than a straight person, in that you need to express your sexuality with a different gender than most men. There are other kinds of emotional differences too.