My mum recently asked me exactly what it is I do. I realised I can’t have ever explained it very well! So I’m writing it down. Ma, this is for you. (And you asked, so you’ve got to read every word of it! xxx)
Anyone else, I won’t be offended if you skip bits of it. Or lots of it. Or print it out to read on the loo. Other people’s work isn’t necessarily interesting.
A bit about paediatric physio
(It's not teeny tiny tennis elbows or brats with bad backs)
You’ll understand that children have many significant milestones as they grow up. Their first word, their first independent steps, their first day at school, the first time they ride a bike etc. The vast majority of children develop naturally, beautifully (with support from people around them) into fully functional and capable young people, without any need for professional help.
Paediatric physios work with children who have problems with the physical side of their development. They may or may not also have problems with other parts of development e.g. learning, speech, social skills. Physical disability is NOT synonymous with mental impairment. Kids with disabilities are just people (personalities, spirits, if you like) who are being held back by uncooperative bodies.
The type of things that can cause problems in children’s physical development include:
- general developmental delay
- brain damage due to problems during pregnancy or around the time of birth (cerebral palsy), or accidents
- spina bifida (a problem with the development of the baby’s spine during pregnancy)
- spinal injuries
- brain or spinal tumours
- problems with nerve signals, or with muscles
It’d be impossible and unrealistic to aim to ‘cure’ children with these types of problems. Neither can we aim to ‘make them normal’. Instead we aim to help children develop life-long functional skills. We do this by looking at what they can do, and at what physical or planning problem prevents them from achieving the next thing, and then carefully planning activities, positions and games which will help them get there. We suggest practical things, which fit into everyday life, so that therapy isn't too much of a chore.
For example;
- if a child has tight, overactive hamstrings, which affects their walking, we’ll suggest that when they watch TV or play games, they sit on the floor with their butt against the wall and their legs stretched out in front of them
- if a child has tight adductor muscles which pull their legs together all the time, we’ll think of positions and activities which help to stretch them. Here I've got children sitting on the family buffalo in the garden, sitting helping a parent preparing food with their legs kept apart by a wedge (made of cardboard and straw), or sitting astride their parent’s motorbike
- if a child has problems because they have weak hands and arms, I’ll ask them to help with everyday things like washing and wringing out the clothes, or filling the vat of water in the kitchen with a bucket, or scraping the corn off the cobs they’ve just harvested)
- to improve a child’s core strength and ability to sit upright, we’ll make a game of sitting on a big log, or a parent’s knee or back, or again, riding on the motorbike or buffalo
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Simple things like making sure children have seats and tables at the correct height can make a massive difference. Taking my penknife to the legs of plastic tables and chairs was quite an event, although it took the centre directors a 2 hour meeting to decide that it was OK to do it.... (As a result, two children who could barely sit up 6 weeks ago are now sitting drawing pictures and starting to feed themselves.)
When families commit to incorporating this type of therapy into daily life from when a child is very small, the child is given the chance to develop far more independence and a better quality of life. This equips them better for adult-hood and the inevitable time when their parents are not around to take care of them. Movement and activities also help children avoid problems such as deformity and pain later on in life.
There are challenges in this work which you'll find the world over;
- If people aren’t convinced about the potential benefit of doing something, then they don’t do it. It can be very difficult to convince people to commit to slightly inconvenient action NOW, in an immediately pressing world, for an unquantifiable, undefinable, un-guaranteable long term effect. Anyone frustrated by procrastination, buck-passing and excuse-making on climate change will recognise this....
- Apparently it can be very hard work being a parent. Being a parent of a disabled child is even harder work. There are good parents and not-so-good parents. There are natural teachers, with endless patience, and there are people who aren’t, and who don’t.
- Some people really struggle to adjust to having a disabled child. Some never do. Denial, over-protectiveness, anger and frustration are all natural feelings which have to be acknowledged and overcome before a parent can help their child to grow up with pride, independence and a positive attitude.
- Caring attentive families want to do everything they can to help their child, but in order to learn new skills children need to be encouraged to do things for themselves. Parents and grandparents whose whole existence revolve around caring for a child’s every need have a really hard time NOT helping them.
- Choosing developmentally-appropriate activities, positions, and games requires constant adjustment, mental effort and several layers of thinking. Without any disrespect, not all families are capable of this.
- Habit. It’s really hard to change habits. Try getting a mother to carry their child on the ‘other’ hip. It just feels wrong. And people forget things quickly when they’re busy. My work here in Vietnam
My job description is to improve the knowledge, skills and confidence of the therapists, volunteers and families who either attend, or receive visits from, three rehabilitation centres in the Quang Nam province of central Vietnam. These centres are jointly run by an American Veteran organisation and local committees, with some input by the Government Department for Labour, Invalids and Social Affairs (DOLISA).
Quang Nam is an incredibly beautiful, but very poor, farming province. It has no special schools or state-run centres for children with disabilities. Almost everyone works on the land. During the three-times yearly harvest periods, it’s all hands on deck for a month each time. Very few people have cars in the area, so children who can’t be transported somehow on the back of a motorbike / bike stay at home. Everyone is poor, but families with disabled children have additional financial difficulties. Healthcare is free for children under 6 years old, but after that families have to buy medicines, pay to see the doctor, pay for operations, equipment etc.
There are some specific cultural challenges in my work here in Vietnam.
“If he can’t walk then what’s the point?”
Generally (although of course there are sad exceptions) it seems that Vietnamese families love children born with disabilities, and care for them in terms of meeting their basic nutritional needs and keeping them safe. But there often seems be a deep sense of resignation. A lack of hope or ambition for them. You can unfortunately see how this attitude arises when you consider that children who can’t get around independently can’t go to school, and that people here depend on physical work to farm the land. But the devastating result is that many many children spend their lives lying on their backs, under-stimulated, fed and washed and carried about by a long-suffering parent or guardian, developing deformities, and with no prospect of anything different throughout their adult lives. It’s heart-wrenching. Until people can be convinced that children can achieve a lot even if they can’t walk, it’s an uphill battle for these kids.
Effective therapy needs creative and flexible thinking Choosing the right kind of activities needs firstly a good understanding of the child’s problems, and secondly the ability to think creatively, flexibly and practically to figure out what will help them. The process is not formulaic, and every child needs different activities as they grow and develop. Dare I say it, and I really don't want to sound patronising, this doesn’t come naturally to most Vietnamese. In Vietnam the education system is very formal and teacher-centred. There are a lot of rules. Children are brought up to obey authority without question. This unquestioning mentality continues to be fostered in adult life. Vietnam is a single-party state and people are not free to question the government.
Paediatric physiotherapy training in the colleges seems to be as I've heard it was in the UK maybe 40-50 years ago. It consists of passive exercises that parents do TO their children ("hold their leg like this for 10 seconds, repeat 5 times, 5 times a day"), or using gym-type machines (quads press, hamstring curl, arm weights etc), which are completely inappropriate because a) they don’t teach any functional skills b) they’re really boring, and c) teaching parents and children how to use these machines is pointless as they can only use them at the centre.)
(I promise I didn't ask him to make a sad bored face!!)
So it’s understandable that the kind of thinking needed to plan an appropriate, effective and malleable therapy program is difficult for therapists and families here. I’m not saying they’re not intelligent enough, it’s just a completely different way of thinking.
(Having said this, I recently spent some time with 3 experienced paediatric therapists from Saigon, who have studied overseas (including the Bobath concepts). These guys were committed, thoughtful, had immaculate handling skills, and demonstrated a very practical, problem-solving approach to therapy. They were an inspiration, and backed up everything I had said at the centre. I look forward to working with them again.)
Let's NOT agree to disagree!Thanks to my years working in the Black Country, I'm used to people saying exactly what they think. If a parent doesn’t believe or disagrees with what I say, I’ll (generally) know about it (often in no uncertain terms). Here in Vietnam, people like to agree. It is considered rude or disrespectful to disagree. So I’ll talk to a family or therapist, and think that they undersand and agree with my idea, and then see what they do and it’s completely different (it’s either that or my interpreter is not doing her job very well!) Also, it is generally considered very ‘bad’ to make mistakes. So people will be evasive, or make irrational, impractical decisions, in order to ‘cover up’ mistakes. It’s pretty hard to adapt to working in this type of culture, but understanding it at least helps to reduce the frustration!
Feelin’ hot hot hot...
Think about how your body feels when you’re cold; how your muscles tighten and tense up. In the UK, a lot of the children we work with have problems with high tone, short tight muscles and deformity. Here in Vietnam it’s really really hot, averaging around 25 degrees, with humidity around 70-80%. Think about how you feel after a hot bath. Everyone (disabled or not) is pretty relaxed and lethargic and floppy. Most of the rural population sleep sprawled on the floor or in hammocks for an hour or two every lunchtime. It is no surprise to find that lots of children with physical disabilities are floppy, low-toned, and like to lie splayed out on their backs.
Lost in translation...?Whilst I’m trying very hard to learn Vietnamese, all my work is done via an interpreter. Who has no experience of therapy. And despite being an English teacher had never actually spoken to a foreigner before getting this job. But she’s lovely, and learning fast....
But enough about the problems...
Time at the centre is fun and full of laughs. I feel lucky to spend time there.
1) My first work has been to try to get the therapists and volunteers to appreciate the value of stimulation and therapy activities for the kids. If I’m going to have any impact here then I need them to be committed and comfortable with discussing the concepts with families. (I’m going to try to produce a simple story booklet describing two children born with similar disabilities, but very different outcomes depending on their family’s commitment to therapy and activity. Any artists / illustrators.... let me know if you have any free time! David Werner has done similar stories as part of his fantastic book ‘Disabled Village Children’ – which is available free online, and was the book that first inspired me to work overseas. He’s my hero.)
2) Teaching (and demonstrating, and writing out, and drawing, and putting pictures on the computer, and the walls...) some practical ways to help children to develop physical skills and avoid deformity. I’m trying to adapt the techniques I learnt whilst working in the Sandwell Paeds team (thank you and miss you guys!) to fit life here. See the examples above.
3) Training the staff and volunteers on the concept of ‘building blocks’ of physical development, and the need to focus on the ‘next block’ rather than jumping ahead (i.e. work on head control, then core control, then rolling and sitting, then crawling, rather than taking a floppy child (who can’t hold their head up), hoiking them up under their armpits and ‘walking’ them round the room for hours on end).
4) Families here can’t afford specialist seating. So I’m exploring and teaching ways of supporting children in a sitting position using materials and objects found in the home or the nearby environment. When a child is sitting up they can see what’s going on around them. They can interact with the people in the room. They start to develop head control. They can be fed without choking (try eating or drinking lying down or with your head tilted back....) There is a lady doing some inspirational work in Africa making seating out of glued together sheets of cardboard – I’m planning to try the same thing here....
Mum.... mum!... MUM!!! wake up!!!
Anyone else that's got this far, you are a true friend. And definately deserve dinner when I get back. And I promise the next post will be utterly un-serious. And will include the beach. And beautiful Vietnamese people. And, er, more recipes...
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