I looked
through my blog recently and decided to re-publish this post below as I
enjoyed it so much –
These
are all new experiences that have been built into the conductive programme to
be worked on this last week
- Surfing the net
- Booking tickets on-line
- Reading up on the Net about possibilities for
museum visits
- Remembering pin-numbers and learning how to use a
bank card, in a machine and in the shops
- Travelling together by bus
- Travelling alone by bus
- Using mobile phone to organise lift home from bus
stop
- Arriving home in one piece
- Taking own shoes with splints to be altered
- Ordering food and eating it in a restaurant
- Going to the theatre
There
is still the old list. The list that contains all the things to practise until
they can be done alone
- Vacuum-cleaning
- Preparing lunch
- Shopping
- Tying shoes
- Taking medicine and tablets with no help
- Mixing paints
Then
there is the list to practise every day because it is a part of life
- Clearing and preparing the table
- Filling and emptying the dishwasher
- Tidying and cleaning the bedroom
- Drinking quietly
- Getting ready for work alone
- Walking five kilometres, not every day but
sometimes
- Painting
- Sweeping the workshop
- Talking to people in the street
In
the bag? It all depends on the mood!
The last list is a list of experiences that are all in the bag, but actually doing
some of them is still dependent on Lust und Laune, being in the right mood
and frame of mind.
It is difficult growing up in a family with four children who are all expected
to do their bit, the bit each one is capable of at the age they currently are;
the bits that keep their everyday family life running smoothly.
The client for whom the lists above were written spent most of his childhood
not being able to do much to assist in the smooth running of family life,
except to look after himself. He learnt to wash and dress completely alone and
to eat and drink. He can spread and cut, and mix and stir. He can climb the two
flights of stairs alone and many other things. His contribution to the family
life for many years was being as independent as he could be freeing up other
family members’s time for other things.
Over the last few years things have been changing, he is capable of more and
more. And now that he is more able it is incredibly difficult for him to adjust
to having to do things for the rest of the family and not just for himself.
As soon as his siblings realised that their brother could walk and at the same
time carry things safely, even put things in and out of the dishwasher, that
was it. He was roped into the evening ritual that the rest of the children had
of preparing the Abendbrot and clearing away afterwards.
Teenage squabbles
Not only was their Brother part of the helping household, he was also part of
the accompanying ritual of arguing about whose turn it was.
It is wonderful to hear one of the best things that I can imagine experiencing
in my work within a family – siblings arguing. I mean all of them arguing, including the one with a movement disorder and
a speech disorder too!
It can get very loud!
I recently heard, from a floor below, the younger sister
really having a go at her disabled brother. He thought that because he had just
finished work he was exempt from helping in the kitchen. Sister had only just
got home from school so she wasn’t having any of it. She knows as well as
anyone what her brother is capable of and they argue about it just like in any other
family. He always helps in the end but only after resisting for a while. His
help is needed more than ever these days as there are only the two siblings at
home during the week and they have to share the work between them.
Tough
love
Little Sis is tough. But not always. She is the sister who would creep into her
brother’s bedroom when they were younger and secretly help him to put on his
socks. She always told us that he had done it alone, but we knew and we turned
a blind eye to this sisterly love!
This Little Sis wasn’t always there when he “needed” her so he often had to do
it himself, and therefore he learnt despite the sneaky help! As a child she
would stand up for him and defend him if he had been naughty. But now she is a
teenager and the one sibling at home with him all week and she is really tough.
It is the twin brother who now as a young adult helps
with showering and dressing when help is needed. They have a special kind of
relationship, not so much a saying No
with these two, more a saying "Yes, you can do it, if you try hard
enough".
It is interesting to observe how relationships change in this big family. The
behaviour of these teenage and adult siblings of this motor-disabled young
adult is different to their behaviour when they were children. As they become
more and more independent themselves, they expect their disabled brother to
become so too. They take on part of the role of their parents and also of
teacher. Sometimes even protector.
It is even more interesting to observe this when it is happening in a family
where all siblings have been involved in a conductive family life as children,
and its still going on now even as they become young adults.
Sibling
experiences
I have been told by the twenty-one year old big sister that as a child she
didn’t really take much notice of the comings and goings of her Mum, younger
sister and brother when they went on ‘therapy trips’. Of course she missed her Mum while they were
all away on the various trips that they made, but she was usually happy to be at
home with the rest of her extended family, going to school and carrying on with
the daily routine. Nothing much changed for her, not as it did for Little Sis
who always had to go along with Mum.
As a teenager and young adult Big Sis became more involved in the life of her
brother.
Big Sis tries to give her 20 year-old brother some of those teenage experiences
that he would otherwise have missed. Physically he is now able to join in more
activities than he was even five years ago, so he is trying to catch up fast.
Big Sis does a good job she takes him places that a nineteen year old doesn’t
wish to be taken to by a parent and does things that are hard for the twin
brother to do.
Of course the twin brother could physically do them but psychologically it is
very difficult for him, so Big Sis does as much as she can to make a social
life possible.
They go to parties together with her crowd of friends; they have days out with
the same group at the lake. And you know what she finds most difficult on these
trips? Not looking out for her brother so much as dealing with the reactions of
friends and strangers who they meet.
Sometimes her motor-disabled brother over-estimates his capabilities, often he
just wants to have a go and decides for himself that he is very able. He has
been brought up to believe in himself and to have a go but he often takes on
too much. He knows that when he is out with his sister not everything is
allowed. Sis does not want to have the responsibility of something going wrong.
Some activities are just not allowed and she makes that quite clear.
I was told the story of the day that her brother disappeared and was spotted
out on the lake in a paddle-boat without a lifejacket!
When things like this happen she is angry, brother understands and apologises
and promises never to do it again (till next time!).
What she finds difficult in this situation is not being tough on her brother.
He was, I suspect knowing him well, expecting it even as he sat out on the lake
in his paddle-boat, proving to himself that he could do it alone. It is the
reaction of her friends and of the strangers looking on that is so hard for
her.
She thinks that they feel that a teenager with motor
disorders should not be reprimanded, should not learn what is allowed and what
is not, should not hear the word No, should not learn that Big Sis is not
prepared to take quite as much responsibility as her parents do.
Big Sis thinks that the onlookers are being very critical of her and she
wonders what it must have been like for her parents when they were all young
children. All four children were treated exactly the same, I know this to be
so, as I witnessed it. There were probably many strangers, and
not-so-strangers, with their critical looks and even comments.
Big Sis follows her parent’s example, she doesn’t let anything go. If No needs to be said, she says it but it
is nevertheless hard when she sees onlookers shaking their heads.
Transformation
Children grow up, even those with a motor disorder. Over the past five years I
have been asked to work in several centres to advise on the opening of adults'
groups, as suddenly the very first ‘Pető’ children have became adults.
In a conductive upbringing at home this is not such a sudden realisation,
especially when there is a house-full of children. All grow together. Activities
change and the routines change. Roles get swapped and new skills are learnt.
Sometimes old ones are lost. When the end of playing on the floor with heaps of
Lego comes, it is so often also the end of the skills that go with it – being able to
move around on the floor, standing up and crouching down also often get less
practice and therefore becomes difficult.
When games are no longer played there is the danger that fine-motor skills will
cease to develop. It depends on what takes their place. Toys are not around anymore,
but there is always the razor and the deodorant, the lap-top and the mobile
phone to deal with. Cooking lunch, baking cakes, vacuuming and washing up,
playing kicker and snooker are the new activities.
As the conductive upbringing continues into adulthood it gradually transforms
into the clients' conductive way of life. Different people take on different
roles, carers and siblings begin to take on the roles that the parents had. As
for all young adults, parents should naturally be taking a less prominent role
in the lives of their disabled children. Sometimes this happens, as in the
family that I am describing, very often it does not, or cannot. There are not
always the people available to take over the role of the parents, or it is also
often not what the family wants.
It is always hard to stand back and let adult children go their own way but
when one of those children has still so much to learn before being independent
it is much, much harder. Because then it often means handing over or sharing
the role of upbringer with someone else, just like on that first day at
Kindergarten.
