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Case studies
April's story by her mother, Liz
I’m Liz and my daughter is April. She has been diagnosed with microcephally and cerebral palsy. Her teacher, her auxiliary, her physiotherapist and her physical education teacher all play a large part in implementing her MOVE programme.
In thinking about what I would like to say about the MOVE programme I wrote down the letters M, O, V and E, and came up with a word for each letter that helped describe what MOVE had meant for April, I and our family:
- M = Motivating
- O = Open to all
- V = Vital
- E = Encouraging
Motivating
With MOVE it is so easy to become motivated. It is simple to use and the demands on the carer are not overwhelming. For me it is not an exercise programme that is isolated from everyday activity, instead it is integrated into normal family life. In the past we have had an exercise programme to do each day. Quite often it would go well on Monday, Tuesday and Wednesday. It would fall by the wayside on Thursday, be passed over because of guilt on Friday and even though you managed the programme well on Saturday and Sunday your achievements would be marred by failure and the sense that you were an awful mother!
However with MOVE, the targets are sensibly broken down to allow you to start your child at a level where progress is achievable. They also aim to work well in the home environment or school. Thus teachers and carers (usually busy mums!) find that they can work away at the targets without noticing that they are even doing so. No particular set time in the day is required to work towards targets; instead MOVE is just a way of life. To mums it is a happier and more natural approach, since it is exercising for a purpose, e.g. to be able to sit in a comfortable chair and watch television with the rest of the family.
Open To All
With MOVE everyone can start somewhere, since the targets are so sensibly laid out. As a parent it can be so distressing when well meaning, but insensitive individuals ask “How is April doeen then?”(We live in Inverness remember!) “Is she walkeen yet then?” What you really want to say is OF COURSE NOT, it took two years for her to learn to eat from a spoon, how do you expect her to have learnt to walk in the two months since you last saw her! Of course, instead you mutter a quiet and embarrassed no. However, now that April is working on MOVE, we can reply “No not yet, but she is now sitting on a chair without support and can help herself up to standing if she holds your hands”. MOVE…A happier outcome for everyone…and the preserver of many a friendship!
Vital
…For the health & safety and future movement issues of the child and carer. MOVE is a programme which combines independent movement and movement with support. Some programmes/attitudes in the past have taken the line that if Johnny can walk independently, then he walks, otherwise he is wheeled about inappropriately. The same attitude is applied to standing and sitting and is the source of some injustice, for example:
Denying the child/adult the right to use what physical ability he or she has, even if very limited. For April this would have resulted in her never having the opportunity to help herself in and out of the bath with support (thus saving my overworked and ageing back) or to zoom around the corridors of her school, nosing into activities in other classrooms! This of course has cognitive implications since there is such a strong link between sensory experience and cognitive development.
Unnecessary work such as lifting and hoisting by carers. With the MOVE programme in place the carer and cared for individual can work together as a team. It prevents the child/adult from losing independence and gives him/her a chance to regain the right to ownership of his/her own body. For example April is now able to sit independently at her table, on her little yellow bench. After working with her there, since she cannot yet pull herself up to standing, you would be inclined to lift her up (well I would - sorry!). But now that one of her MOVE targets is to get herself from sitting to standing with support, all I now do is say to April “Let’s stand April” and with a little support to her hands we are “free” to move onto the next activity, with April using her own body to take her where she wants to go.
Encouraging
These MOVE activities have not only had an impact on her physical development, but now that she knows her body belongs to her, her mind has followed! She is no longer the passive little girl who just lets things happen to her, but she has realized that she has the right to make her own choices and she practices it regularly! The sense of achievement she gets, from simply doing tasks for herself, is evident in the raising of her self-esteem. For example April regularly claps her hands with excitement when she feels that she has done something well. It is worth using MOVE just to see such a happy scene.
Well Done April!
This story was written in 2001. April has now graduated from MOVE and is able to sit, stand, walk and step independently!