Parents’ coaching at the CEC du Gard- Active lifestyle in isolation with handicap, is that possible?

Living in isolation is not something that we were prepared for, nor something that we were expecting to experience one day. Families with children with motor disorder may find this situation particularly hard to live with, as all therapies and services are closed down. There is an on-going national survey interrogating French families, who have children with a handicap, about their experiences during isolation (ECHO) - the result is quite devastating so far. Many parents feel that they are left alone, they witness their child’s regression as a result of the lack of stimulation and mobilisation. This could be a source of stress and frustration for parents who are helpless… However, this situation could be lived differently. Conductive Education with parental guidance (parents’ coaching) may be a powerful tool to assist families in any type of situation, where there are only family members around, and children are in a challenging situation, testing their level of independence. Our own feedback about lockdown is very different from the results seen above (ECHO survey). Our parents in this unknown situation were able to set up their own short-term aim for the isolation time, they know how to motivate, stimulate and assist their children in the everyday life with all self-care activities, how to position them correctly, how to communicate with them, how to guide them to change place or posture. They sent us many testimonies and photos-videos about their active isolation life, and that made us even more convicted that our choice of the project parental guidance was the right one for our families.

At the CEC du Gard, parents’ coaching has been the main project with a Conductive Education program provided all year round as well as in sessions. Conductive Education is a system that integrates all human qualities to create a well-balanced personality and an active lifestyle. The activities of our daily routine are assisted in our conductive centre by the trained conductors and assistants. But it is also a lifestyle that can and must be continued in the home situation as well. Parents’ coaching creates a bridge between centre based conductive pedagogy with professionals and education / re-education in the everyday family and social life. Parents are learning different ways of assisting and positioning their children within the frame of an active daily schedule, and they get more and more confident doing it at home as well. The conductor leading the program establishes a positive teaching-learning environment. We encourage the parents as well as the child to learn the ways of changing place and posture, to coordinate their movements, to manipulate, communicate, improve at self-care activities, and to play and learn as their pairs. We motivate, guide and assist parents to learn those actions and movements necessary to be as active as possible at home. All that, of course, with an on-going guidance and correction of the conductor, especially when the assistance seem to be a bit more « technical ». We provide this « coaching » not only to the parents with very young children, but to all families coming to our program, mainly at the beginning of each session. When families go home at the end of the session (or at the end of each term with children enrolled for all school-year) they understand our aims and tasks for the child, and they can assist their child to live a life at home with an active daily schedule, that enables them to use the learnt skills without difficulties.

Parents are very keen to assist their children correctly. They want to witness the progress with their child and play an important role in the education of their child. In an everyday situation they must assist their children already several times each day to eat, to change place, to sit, to communicate or to use the toilet – this being without any particular situation such as COVID-19. At the CEC du Gard conductive education centre we strongly believe that not only the child with motor disorders has the right to be well assisted in his/her home environment, but also their parents have the right to know, how to install, assist or encourage their child in the everyday life situation. That way, they know how to carry on with those, every day caring and educational tasks in a way which is more appropriate to the age and developmental-level of their child.

The conductive Centre CEC du Gard has developed a so-called Key Item Score « KIS » system to assist the families participating in our program since the opening (2015). This is a list of individual aims and tasks containing 4-5 personalised aims for each child, which is a very realistic goal to achieve. There is one aim for each key point of their development. Key points are different with each child, but they come from all domains and aspects important from the child’s overall development. These key points are communicated and well explained to the parents in individual meetings and a written document is given to the families at the end of each school term or at the end of the block courses. This is a document that parents use all the time, and it’s reviewed at the beginning of each new term or new block course.

The parents from our centre are able to assist their children at home, but lots of them are looking forward to coming back to the centre in spring 2020 to put their goals and tasks to the next level! All block courses were cancelled during the isolation period, so the usual break between block courses became unusually long.

For those families who we were expecting during the isolation period for block courses, we provided an individual Visio-meeting on Skype to discuss any issues they are facing and to review the aims and tasks. Parents appreciated this way of assistance and they sent us testimonies with photos and videos about their active lives in isolation. The CEC team remained available for questions and discussions, and we have had many interesting exchanges with the parents.

We organized meetings with the parents, (which we named « Tisane des parents ») and a virtual afternoon tea for the children too using the amazing new technologies for multi-screen conferences.

To make sure that children always have activities adapted for their needs and abilities, we made short videos called « Challenges » and presented a couple of them each week on the centre’s Facebook page. We received a lot of photos about children completing the challenges!

For those families with long experience in our centre-based program with parents’ coaching, we organized mini-group visio sessions on-line with our conductor for 4 children maximum at a time. As these parents know how to assist their child in the program, we gladly noted that it was a success! We continue to believe that physical presence of the conductor is extremely important to motivate, guide and assist the children, to observe and improve the task series and to teach the parents. However, with experienced parents and care-givers zoom sessions seemed a satisfying alternative solution for the lockdown period.

We prepared a survey to ask our families about their experiences during the isolation and also about their plans for returning to the centre, we processed the information collected. The results show that parents who attend regularly our sessions with parents’ coaching are confident with the ways of assisting their child. The average level of confidence to assist children with all gross motor skill tasks was a sunning 8.1 at more experienced parents, while less experienced parents it was only 6.2 on a scale up to 10. They expressed a high level of overall serenity, and noted that the wellbeing of their child was unexpectedly good and stable despite of the difficulties of the lockdown situation. 100 % of the families would recommend conductive education with parental guidance for other families with a child with motor disorder, after this experience.

All these documents, surveys and many more were prepared by regular weekly team meetings, because life doesn’t stop behind the doors. The director-conductor-assistant work meetings were held on Skype or Zoom, and each time we worked hard on the centre’s projects.

Of course, all that wouldn’t be possible without the work of our board of trustees, volunteers and with many online meetings during the lockdown of the centre! It was not an easy task to follow the guidelines and decide of each aspect of the life of the association and centre. Now we can say that life is going on even with the doors half way still locked, we started the individual session parallel to the Zoom-sessions that we will carry on for another couple of weeks. We will soon welcome back our well missed kids with a strict and well-prepared sanitary protocol, and a conductive program in mini-groups (4 children maximum in a group) with a lot of actions and project for the rest of the year! We hope to “get back to normal” centre life in September 2020, fingers crossed… What an adventure it is to use our capacities and skills in this never before experienced situation! It’s up to us now, how we can use these experiences!

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