Sonja Mensch

9 General introduction and outline of the thesis GENERAL INTRODUCTION This thesis is focused on the development of an instrument that measures motor abilities in children with severe multiple disabilities. Children with severe motor abilities are characterised by severe or profound intellectual disability and they have very limited motor abilities (Veugelers et al., 2005) (Mergler et al., 2012) (Rieken et al., 2011) (Putten van der, Vlaskamp, Reynders, & Nakken., 2005). Currently, evaluation of motor abilities in children with severe multiple disabilities is often based on subjective evaluation, experience with this group or on instruments developed for other groups of children with motor disabilities (e.g. Gross Motor Function Measure (Ketelaar, Petegem van-Beek van, & Visser., 1999)). Physiotherapists needed a standardized instrument to evaluate the motor abilities of these children clinical practice. The instrument that we intend to develop aims to evaluate the efficacy of therapies and monitor changes in motor abilities throughout time. My interest in this group of children started in 1992 when Jeroen, the son of a friend, was born. Although Jeroen’s parents were worried about some abnormal features they observed, the doctors told the parents that everything was normal. After three months, Jeroen had his first severe epileptic seizure and this event started the medical process. Jeroen was diagnosed with the West syndrome, which manifested itself by the occurrence of infantile spasms. From the moment the epileptic seizures started, his development stagnated. Jeroen never learned to talk or to move and he seemed to have no expression in his face. If you knew Jeroen very well, you would be able to see in his eyes or other small body signs how he felt. I started working as a nurse with Jeroen when he was a little boy of one year old. In that time I studied physiotherapy and worked as a nurse. Besides nursing Jeroen I accompanied Jeroen in a couple of his holidays acting as his volunteer. In all these years I have come to know Jeroen very well and learned so much from this beautiful boy. He taught me things such as to enjoy the small things of life and to explore the meaning of his subtle body signs. In 1999 I started working as a physiotherapist at the children’s day-care centre Jeroen visited. My interest in this special group of children was growing every day and it still is. This severely disabled group of children, mostly suffering from major health problems, is a great challenge to work with. For example, a challenge is focussing on possibilities instead of disabilities, which are aimed at positively affecting quality of life. For example, Jeroen had severe motor disabilities; he was not able to e.g. move around, maintain a sitting position or to roll over. However, Jeroen also had some motor ‘possibilities’ or abilities. Support from others or support from an assistive device can help in facilitating a certain motor ability.