Muscular dystrophy and a conductive upbringing.

"The rough with the smooth" by Susie Mallett 20th June 2010

Calling conductors who have experience in this field!

I have some experience having had children in our groups now and then over the years with muscular dystrophy.

While I was doing my training in Hungary, at the Petö Institute, I remember that I was told by a conductor that conductive groups no longer took children with muscular dystrophy as they believed it upset the children with cerebral palsy when they witnessed when the dystrophy children ceased to progress and slowly lost the strength they had acquired in the early years in conductive groups.

I do not know if this really was the policy or not, but while I was there in the late eighties and early nineties I did not meet any children with muscular dystrophy.

As a student conductor I visited many centres in Budapest and in other cities in Hungary that were offering conductive education, all with conductors, some with and some without connections to the Petö Institute. Some centres had supervision by conductors from the Petö Institute several times a year just as many of the centres in Germany still have. Some centres paid for students to study at the Petö Institute and once they were conductors they went several times a year for refresher courses and to work in groups that were relevant to the work in the centre where they worked.

I remember that at one of these centres I observed the work in a group which was made up of both young children with cerebral palsy and muscular dystrophy. I was told that here too that they had decided to change their policy and no longer take children with muscular dystrophy in the groups for the same reasons as I was told at the Petö Institute. The children with muscular dystrophy at this centre remained in the Kindergarten group but when they reached school age it was planned for them to attend another centre.

There were other institutes apart from the Petö Institute in Budapest where these children could have attended classes, it was less easy to find placements for them in the country towns.

At the moment we have children in the integrated Kindergarten and in the Tagesstätte (after school) groups who have muscular dystrophy. One is five years old and another is now fifteen. The younger child is building up his strength and learning how to carry out activities with the strength and skills that he has. this child takes part in activities that he had not attempted before and is delighted to be taking giving it a go!

He has his own scooter and go cart to use when he is outside with the other children and when he is with us in the conductive sessions he is learning the movements he needs to use these and other toys. He is developing his own techniques for climbing and walking and even running. He is building up more control in his body at the same timeas learning all these new skills.

The fifteen years-old child has attended the after-school group since she was seven years old. She is unfortunately not as active as she was as a young child. She still learns during the conductive sessions how she can position her body and use the skills she has to make the most of the strength and abilities she has and how to use these in all her daily activities.

Yes it is sad for her peers to see that this child is less strong than before but this group has been together for so long they are like family for each other, therefore I am sure that they would be sadder to see their friend move to different group than they are seeing her condition worsen.

In my training I did not come across children with muscular dystrophy. All my knowledge in this field I have acquired from asking more experienced conductors, from the observations I was able to make in other centres I have visited, from my own personal experience working with children and of course from reading.

I have a lot of experience with young people with multiple sclerosis and I can call on a lot of what I have learnt in this field when I am working with children with muscular dystrophy.

In my experience often children with muscular dystrophy have been sheltered in their upbringing, protected perhaps a little bit too much and have not experienced as many of the normal things of childhood as they could have done. Families often believe some activities are too strenuous for the children, or that they should not be required to take part in the normal family activities like washing up, baking, setting the table, helping wash the car etc so they can save their energy. When these children are so inactive they often get weaker and do not learn the social and practical skills that they need for their everyday life.

Just as with clients with multiple sclerosis it is important with clients with muscular distrophy to find the happy medium. To encourage and motivate the clients to lead an active life but also to help them to learn their limits, so they recognise when to rest and learn how to relax.

With children with muscular dystrophy it is important to give them activities for a short time and with different movements and energy levels required. We must do this too with children with cerebral palsy, planning activities according to their abilities and stamina levels.

Especially with young children it is important to change the activity often and to make the day interesting and motivating, although it often happens that children will surprise us all by becoming so excited and motivated that they will do something for a relatively long period of time.

When working with children with dystrophy it is important to observe where the limits of their strength are, to try to extend these limits but at the same time preserve enough strength so the child can actively take part in all the other planned parts of a programme and their day. As a conductor we must watch and change activities both individually and for the whole group when necessary.

With adults with multiple sclerosis it is very important that they gradually become aware of their limits and their abilities themselves, and that they seek to extend these but also to learn with our help how to do just enough so that the next day is also as active as the one before and that they do not need to spend it in bed, totally exhausted.

My adult clients gradually learn to tell me when they wish to leave out a couple of tasks because something aches or they are tired, children tend to carry on until they are worn out. With the adults I can respond to their wishes by spontaneously building a few more breathing or relaxation tasks into the routine so they can join in again if and when they wish. When working with children, as a conductor I have to plan the day to accommodate the child or children in the group with muscular dystrophy. We still need a programme that is continuously changing from sitting to standing, from jumping to singing, from lying to walking, from painting to bike riding, water play to lunch break. There must be active times of rest and active times of play, lots of observation, lots of laughter and hopefully lots of progress.

Together with our group and with our Littlie with muscular dystrophy we are doing very well, he is in our conductive group with five nationalities. His mum is doing well too, she comes to visit the group often to learn with us.

As well as learning to speak German our Littlie can now walk to and from the dishwasher carrying the plates and glasses from the table until the table is cleared! He can walk up the stairs without pulling himself up on the banisters with his arms, he even walks along a bank on his own and on top of a row of plinths. He can sit on the floor with his legs in front or with them crossed unsupported by his hands so he can play games and do puzzles and he can throw a ball from above his head with two hands and into the basket-ball net. He can cut his own food and hold a big fork ( they are heavy). He can roll a snake from clay and stir the mixture for a cake and he can reach the tap to rinse his paint brush by standing on tip toes. He also can ride his go-cart without always needing a push from a friend .

That is quite a long list of skills all of which go towards making his day very independent and also full of fun. As he learns to use his energy in the right places and in the right amounts for the job he is doing and as he adapts his movements so less energy is actually needed, at the end of the day he is no more exhausted than the rest of his friends in Kindergarten.

In comparison to my wide experiences working in stroke groups and MS groups, and with children and adults with cerebral palsy and with spina bifida, I have must less experience working with children with muscular dystrophy, although this experience increases too as the years go by.

If any of my readers have something to tell us of their own experiences with muscular dystrophy and a conductive upbringing please do write it here. Either in a comment or in an email for me to publish, or even write it on your own blog.