Conductive upbringing thirteen years on, and a bit more on saying No

"Spring rain", by Susie Mallett, 25th March 2010

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 about possibilities for museum visits on the Net
• 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. This contains all the things to practise until they can be done absolutely 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 kilometers, 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 are experiences that are all in the bag, but actually carrying some of them out is still dependent on Lust und Laune, feeling in the mood.

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, the bits that keep that 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.

Over the last few years things have been changing, he is capable of more and more. 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 Brother part of the doing he was also part of the other accompanying ritual, 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. 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 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 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 children she would stand up for him and defend him if he had been naughty. Now she is the one at home with him all week and 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. Teenage and adult siblings of a motor-disabled young adult behave differently to how they did when they were children. As they become more and more independent themselves, they expect their disabled brother to become so too. They take on a Little bit 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 still now as 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. Of course she missed her Mum while they were all away on the various “therapy trips” that they made, but she was 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 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 brother those teenage experiences that he would otherwise miss. 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 giving her brother as many teenage experiences as she possible can. Taking him places that a nineteen year old doesn’t wish to be taken to by a parent and doing 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 when she does so.

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 the being tough on her brother. He was, I suspect, expecting it even when 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.

Big Sis follows her parents 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 “Petö” 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 with heaps of Lego comes, so often the end of being able to move around on the floor comes with it, 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 any more, 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 doesn’t. 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 roleof upbringer with someone else, just like on that first day at Kindergarten.