‘This resource is going to be a game-changer for schools, giving them the tools to truly make sport and PE equitable for everyone. I have already started sharing this with the families I support here at Great Ormond Street and I highly recommend it to all Physios, OTs, teachers, TAs and educational professionals who care for someone living with Duchenne.
The guide not only gives the schools a greater understanding of the physicality of Duchenne, but gives you a clear and easy to implement programme of adaptations to activities which I am certain will prove to be a great benefit to the children and young people living with Duchenne. “
Marion Main, Lead Physiotherapist. Great Ormond Street Children’s Hospital.
Each child or young person living with Duchenne muscular dystrophy will have a Physiotherapist and/or Occupational Therapist as part of their care team. It is important to discuss each child’s individual needs with their own Physiotherapist or Occupational Therapist.
Since Newly Diagnosed Duchenne families may be on a waiting list to be allocated their Physiotherapist and/or Occupational Therapist, some students may not have physiotherapy input yet. In this situation parents, carers and education professionals should seek advice from the Neuromuscular service.
The purpose of this guide
The following information is designed to be a guide for use in schools. The best inclusive PE practice comes when there is an open discussion between the student/teacher and his or her peers; quite often classes can come up with very clever ways of overcoming difficulties and ensuring the student with additional needs is included.
Things to consider at school;
- Be aware of fatigue and watch for patterns over the week; for example is the child more tired the day after PE?
- You can make some simple adaptations to allow the student to have fun and be included.
- Remember the student should warm-up before undertaking any activity and cool down afterwards.
Further reading
Further guidelines for teachers
You will need to discover your student’s interests and work with them to make participation appealing and accepting.
Remember to empower the whole class and help develop their problem solving skills. Be sympathetic to the student’s needs. They are never going to be a top athlete or football player but its hard if they are always made to feel “the worst”.
Avoid allowing children to pick teams as students with DMD are often left out and if they pick the team, there can be children who verbalise their dissent. Teams can be picked by age, day of birth, height, alphabetical order and all manner of things that can vary. Teams can be changed during games.
Praise and encouragement are essential in motivating them to be involved. It is important to have an understanding of which muscle groups are more severely affected and which movements are possible.
You should ensure that their exercise program does not demand too much muscular exertion and should always avoid overwork or the “wrong” exercises as this can damage muscle.
Special attention should be given to stretching tight muscles to prevent contractures. The primary objective is preventing hip flexion and ankle plantarflexion contractures (where the young person cannot stand with their heels down).
This allows you to concentrate on what they can do rather than on what they cannot. Through this, their abilities will be strengthened and realistic goals will be obtained. Do not underestimate what they can do.
Playgrounds on slopes, slopes or steps to play/field area, fields, gym a long distance from classroom, returning when tired, and the weather are all factors that need to be considered.
Falls and getting up from the floor or a seat.
Students may fall or be knocked over easily. They may have more falls if very fatigued or during a growth spurt. With DMD it is rare to trip or fall forwards, their legs tend to give way and they are suddenly down on the floor.
While younger boys can get up without assistance, the older the students get, the harder it becomes. If they are falling frequently during a PE class they may want to sit out.
Help should be offered by an adult to get up rather than a peer. And as the boys get older, they will also find it harder to stand from a chair, from the floor and from some equipment. A higher chair or seat is better than a low bench or stool.
Encourage activities involving:
- bilateral movements (e.g. both sides of the body do the same action)
- elbow extension
- wrist extension
- forearm supination (palms turned toward the front of the body)
- Stop start activities are perfect, taking turns and having time out
Discourage activities such as:
- Rugby or very physical sports (martial arts can be encouraged in a controlled way by a knowledgeable sensei)
- Running – As the student will often be the slowest
- Walking or standing on toes
- Hanging by their arms
- The use of trampolines
- Jumping off gym equipment
- Very asymmetrical activities
Pacing to prevent fatigue. While the student can keep going for longer than expected, that is only when at their own pace. They will struggle if rushed. The student must feel they are allowed to ask to sit out or rest breaks should built in to every lesson for all children.
Motivate the student with DMD to participate as much as possible. When the other students go for a jog around the oval or run a cross country event, encourage the student to drive around in their wheelchair with them.
Put some thought into how you can modify further sporting activities to allow even some types of participation of the student with DMD with the group.
This is important because as their peers are expanding their experiences and skills in sport, they’re progressively becoming limited in their movement and therefore experiences and skills.
The whole class can also be involved in setting the rules so the student with DMD can participate. In this way competition can still be maintained and the student with DMD will be accepted by his peers.
Duchenne muscular dystrophy progresses at different rates. Each child’s journey is unique and therefore each child will have a different degree of muscle weakness.
If you have brothers in your school with the same condition – do not plan for the younger sibling to follow the same progression/timeline as this is not always the case.
Safety issues
Some games could possibly be modified for the student with DMD, but because they are in a wheelchair it would be dangerous to have him on the field competing against other students for the ball. Therefore safety of the other children must be considered alongside that of the student with DMD.
Remember:
- Balance is easily lost.
- Fatigue is a serious hazard.
- Only moderate exercise should be done.
- No strain should be exerted.
- Strength exercises are contraindicated.
- Consultation with the student’s physiotherapist or parents is recommended to ensure that activities and planned modifications will have no adverse effects.
Although safety of the student with DMD is essential, it does not mean that they should be over protected. All students with DMD are likely to fall at some stage but unlike other individuals they may not recover quickly.
Warm up activities
If it is not possible for the student with DMD to participate in the whole PE session, it is important for them to be involved for a short time in pre-game activities. Therefore a few activities that specifically involve the student with DMD and help teach skills to the other students has been suggested. However, these are only examples of how activities can be modified.
Inclusive PE training
To continue the momentum and create a lasting legacy for disabled people after London 2012, the four Home Country disability sport organisations and Sainsbury’s, with support of Paralympics GB and the Youth Sport Trust, have joined forces to develop Active Kids for All Inclusive PE training, based on the UK Disability Inclusion Training (UK DIT).
Primarily designed to support PE teachers in mainstream schools to include young disabled people within PE curriculum. However, the principles used can be applied to a number of settings and can be of benefit to all young people.
The training can also be used to support other teaching staff, trainee teachers, classroom assistants, learning support assistants and special educational needs coordinators.
Youth Sport Trust
The Youth Sport Trust equips educators and empowers young people with the vision of creating a future where every child enjoys the life-changing benefits of play and sport. By running inclusive and innovative programmes, bringing together communities of educators and providing practical tools and resources.
Clothing
- Plimsolls are not suitable footwear for games and PE. They are not supportive enough and the boys should be allowed to wear trainers.
- Getting dressed and undressed is much harder and slower for some students. If they can come to school in their PE kit or have their PE lesson at the end of the day and go home in their kit, it saves one lot of dressing/undressing. They should also discreetly be offered support.
Inclusive/adapted activities for PE
Badminton
- Use balloons or foam balls
- Use shorter, lighter rackets with larger heads
- Reduce size of court and lower the net
- Use various targets on floor with or without a net
- Velcro the top end of the racket frame and the shuttlecock for easy retrieval
Rounders or tennis
- Use soft, lightweight balls for safety
- Use light weight bat- look for rackets that have larger heads .
- Hit off a tee or hit ball off lap/tray
- Use a catapult or tennis ball launcher to put the ball in play
- Using foam ball practice hitting ball at target marked on the floor
- Hit a ball on a string
- To overcome weakness in shoulder movements, advise your student to hold the bat with one hand and swing their wheelchair around. The force of the swing to hit the ball will come from the wheelchair momentum, not the strength of their arm.
- To make it possible for them to reach first base rule that the ball must be thrown to 2 people before it reaches first base.
- Use a lighter bat or possibly a tennis racket with a greater surface area. Muscle weakness may prevent the pupil from swinging the bat – get the bowler to throw at the face of the racket.
Bowling
- Use bowling ramp, large tumbling wedge with light weight ball, or mini ball.
- A ramp, can simply be made by cutting plastic guttering pipe in half.
- A pendulum bowler frame allows the student to swing a ball on a frame to knock down the skittle.
Football
- Use any light weight football
- Throw for accuracy or distance
- Play table top football
- Allow students to shoot ball toward goal (throw ball, use ramp, push off of lap or hit off tee)
- In wheelchair, can dribble the ball forward using footrests or with feet (with footrests removed)
- Construct “box bumpers” for wheelchairs to keep balls out from under the chair
- If physically possible, allow student to do throw-ins and be an integral part of the game
Table top cricket
The Lords Taverner’s have invented a table top version of cricket to ensure students with complex physical needs can still enjoy cricket.
Boccia
- Pupils must determine whether they are going to throw or become a ramp player.
- Pupils need to practice various throwing and rolling techniques to determine which is best for them.
- Players may need a longer time to deliver the ball if they have difficulty in grasping or releasing the ball.
- Some players may need a place to rest their elbow in order to steady their throw.
Volleyball
- Use lighter and softer balls (beach ball, balloon etc.)
- Reduce size of court and lower the net
- Allow student to hit ball held by peer or hit ball off tray; then have peer pick up ball and pass to other teammates.
- Allow student to be close to net for play (for serve and hitting over the net)
- Play sit down volleyball
Kite flying
- Secure kite string to wheelchair, if student is unable to hold onto kite
- A good cooperative sport for small groups of students.
Catapult
- Use for launching tennis balls to buckets/ bins or have a peer catch the tennis balls in a dip net
- Launch beanbags to floor noughts and crosses/ target
- Launch beanbags to knock down bowling pins or stacked plastic cups
Hockey
- If the pupil has poor grasping skills attach the stick to the wheelchair, either at the side or in the middle between the feet.
- The hand with which the pupil drives the chair is their best and strongest one.
- Pupils may lack physical strength but they can help you to adapt the equipment to suit their needs – ask them!
- Hockey sticks needs to be light in weight and flatter and longer than the average stick. (like an ice hockey goal keeper’s stick)
- Balls may need to be bigger and brighter – easier for control.
- Rules may need to be simpler and shorter.
- Playing area may need to be smaller at the start until the pupil is able to get control of the ball and stick
Golf
- For a higher functioning student, position them forward in a wheelchair to make access to hitting the ball possible.
- Support their arms to make shoulder movement easier, and if necessary allow them to use lightweight hockey stick.
- For a lower functioning student limit golf to putting only.
- Use the practice green at the beginning of the golf course or put the ball at the edge of each putting green and score the amount of hits it takes them to get the ball into the hole (so he does not have to drive it down the range).
Orienteering
- This is a great sport for students to be involved in because it does not require much modification. Because of this all students are made to feel a part of the group and can compete against the other students on the same level.
- Prepare well. Organise the course so that a wheelchair can get around it. Have simple codes at each checkpoint that can be copied by all students.
- Allow students to go out in pairs. Encourage the student’s partner to allow them to do as much as possible. A compass can be fixed to the arm of his wheelchair with a suction cap or some blue tac. The map can be laid flat and stuck to his table that fits into their wheelchair.
Balloon Volleyball
- This game should be played indoors on a wooden volleyball court.
- Divide the group into 2 teams and have each team stand down their side line except 1 player who stands in the centre of the court with a badminton racket.
- Play starts when 1 player hits a balloon over the net.
- After playing he runs to the end of the line and the person at the beginning of the line runs on to the court to play next.
- Meanwhile the player of the side must try to hit the balloon back over the net.
- If that player does not get if over the next person in line tries. The side has 3 chances to hit the balloon over.
- Play continues until one side scores 11 points
Beanbag Hockey
- This game should be played indoors on a wooden court.
- Divide the group into 2 teams and give each student a number.
- Use rolled up newspaper for 3 hockey sticks, a beanbag, and 2 chairs for goals.
- Place the beanbag and 2 hockey sticks in the middle of the chairs and then call a number.
- The people from each team with that number run to the middle and aim to score a goal for their team by hitting the beanbag under their chair.
- Allow the student with DMD to hold a hockey stick so that they don’t have to reach down and pick one up when their number is called.
Target/toss games
- Check current physical education equipment catalogues for these games (foam dice game, toss-um, jarts and velcro darts)
- Place targets on floor, if student unable to toss at wall targets
- Choose age appropriate games
- Use safety suction darts and throw or drop to floor targets
- Foam croquet set.
- Use paper airplane, frisbee, aerobie, football, kooshball, or any age appropriate lightweight projectile
Marbles
- Have students play various marble games at a table
- Build marble run’s
Remote control car
- Races for time or against peer with another car
- Obstacle courses for time (around courses constructed by peers, around objects, knock down pins, etc.)
Teaching Umpire Skills
It is understood that modifying games may take away a sense of competition for the other students. Therefore games will need to be played without the student with DMD being physically involved.
However when this occurs engage him in other ways. Encourage them to know the rules well and become a good umpire. Take time to teach the student with DMD the rules of each sport. This can be done whilst explaining the rules to the other students. Give them a set of rules and go through these with the student to make sure he understands.
Video replays of the television coverage of sports is another way of teaching sporting skills to students and umpiring skills to the student with DMD. Student’s learn by example so while the student with DMD is learning what is required to be a good umpire, his classmates are learning specific skills such as footwork and racket swing. Umpire with the student with DMD until they are confident. Give encouragement and praise. An alarm (for example, a self defence alarm) may need to be used if the student with DMD cannot use a whistle comfortably as they may find it difficult to continually bring it up to their mouth.
The student with Duchenne can also act as ‘helper’ in a variety of activities, such as freeze tag, where they can be the ‘unfreezer.’Keeping score, refereeing, serving as announcer, and other non-physical roles are other ways for the student to participate. Make sure that ground rules for their authority are in place if he is a referee. Be sure that they feel included, not isolated, in their role, whatever it may be.
Circuits
The beauty of using circuits in PE classes for all children with mobility or fatigue issues is that it is “stop-start” with rests. Activities are timed so harder ones can be shorter, and the variety of games that can be added is endless.
Any piece of equipment can be used in any manner of ways. Two minutes may be suitable for some activities while one may be the maximum for the next and each activity has a rest period before going to the next.
Swimming
The fantastic team at Cure Duchenne have put together the following information about the benefits of swimming for those living with Duchenne muscular dystrophy.
The benefits:
- Buoyancy to reduce the stress on muscles and joints
- Mild resistance for low grade muscle work
- Respiratory exercise to maintain or increase capacity and breath control
- A great place for social interaction with others
- FUN!
It is important to monitor the physical demands of any pool program and consult a healthcare professional as needed.
Depending on an individual’s level of ambulation, getting in and out of the pool can be tricky. This blog covers safe transfer techniques.
Activities:
Gliding
- Have the individual clasp their hands above their head and push off the wall to see how far they can glide with one breath or until their body floats to the surface.
- To decrease the work for the shoulders, have them place their hands at their side before pushing off of the wall.
- While gliding they can pretend to swim like a shark, frog, dolphin, snake, etc to get more mobility in many directions (up,down,sideways) and make it more fun!
Breath Control
- Encourage the individual to take the biggest breath they can before playing any of the following activities.
- Search for pool toys under water but instead of swimming deep or far to retrieve them, place them within arms reach and give them an order that they have to pick them up. eg: say, “Go under and get the red, yellow and then the orange rings then come up”.
- Sing songs or yell while sitting together under water. See if you can identify what each other is singing/saying.
- Practice bubbles under water until breath runs out. For a breath control activity, see if they can let one big bubble out at a time.
- Float face down until he runs out of breath and roll to a back float position. Take some deep breaths working on rib expansion and then roll back to a face down float.
Relaxing and Stretching
- While floating face up, do “snow angels” slowly and with the full range of motion of their shoulders and hips.
- While they are floating with their hands above their head, hold their hands and slowly pull them across the pool in a zig-zag line creating a snake-like motion of their body.
- Using the steps, they can do their calf and hamstring stretches with ease.
Thank you
To the team at Redbridge SEATSS for sharing this information, which is based on their professional experience of working with students who have Duchenne muscular dystrophy, and Marion Main, Lead Physiotherapist at Great Ormond Street Hospital for Children for sharing her knowledge and expertise.