Integration at school

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As a parent, you can often be concerned about your child’s development, school skills and behaviour. As a parent of a Duchenne child, that concern can become your number one priority. You can see so many obstacles in your child’s way and you want to be proactive in making their school experience as positive as possible.

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As a teacher, care coordinator or school manager you may also have concerns about having a child with Duchenne in the class. The fact that you are looking for information is a good start and shows that you are open to offering all children, no matter who, opportunities to develop at both at school and socially. As parents, we want to say a big thank you! The support we get from schools in integrating our children into society means the world to us.

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In this section, we want to provide information about that difficulties that arise in regards to school abilities and behaviour in general. The key word here is “ability”. Like all children, children with DMD can be very different and every child is unique. Therefore, what follows is a general guide and may not be applicable to all children with DMD.

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It is our hope that we can contribute to the awareness about possible problems that can occur so that they can be recognized and corrected as needed. Clinical research and experience have shown that learning and behavioural problems are more common in DMD boys than the general population. We therefore want to address these issues and how to approach them. 

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In order to provide a child with DMD the best chance for a positive school career and social integration it is very important to have a good and constructive cooperation with all parties involved; teacher, parents, care coordinators, and GON and CLB counselling. Open and honest communication is essential

Intelligence and Duchenne

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Intelligence is the ability to act purposefully, think rationally and deal effectively with the environment. An Intelligence Quotient (IQ) test is a way to determine a value for intelligence. Such tests can be administered by the CLB. The average IQ in the population is 100 with a standard deviation of 15. This means that approximately 70% of the population has an IQ between 85 and 115. A score of 90 – 110 is considered average intelligence.

A large-scale review of all Duchenne intelligence studies over the past 40 years included over 1200 boys showed that the average IQ was 80 points. This is considered to be low to average. Thirty percent of all DMD boys have an IQ score of 70 or lower indicating that there is a significant intellectual disability. There appears to be a wide variation in IQ among DMD boys and scores can vary from 14 to 134 points. Therefore, there are some boys with DMD with very high to very high intelligence scores.

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The total IQ score is subdivided into verbal IQ (VIQ) and performing IQ (PIQ). The VIQ covers language and reasoning in terms of language (like matching words e.g. piano and trumpet are similar). It is given orally through questions and answers and determines part of the intelligence score. The PIQ covers visual thinking and motor skills. It is the deliberate action part of intelligence.

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Contrary to the decline in muscle strength, the intelligence of boys with DMD remains stable. The VIQ score is significantly lower in boys with DMD younger than 9 but after the age of 9 it increases until it matches the score of the PIQ. Language is more problematic at a younger age than an older age. Language-related problems tend to decrease was DMD boys grow older.

Cognitive profile of DMD boys

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While not all children with DMD are faced with cognitive problems, it has been shown that specific cognitive issues can be associated with DMD. While every child is unique, there is a certain neuropsychological and cognitive profile seen that is independent of their IQ and degree of motor skill limitation. There are three major areas where problems can occur. It is possible to deviate from the profile below this is a risk of underestimating or overestimating the child with DMD.

Practical tips

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Some boys may have problems with their mental flexibility. This means that they can be rigid in their thinking. They are often of one mind and do not deviate. This also means that they are often struggling with transitions in activities, changes in expectations, and that they can be quickly frustrated if things go in a way other than they expected.

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The follow tips can help:

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• Make it clear that the rules apply to them consistently.

• Set clear limits and expectations in behaviour.

• Prepare for new events: Explain what will happen and what is expected of them.

• Do not use vague terms like “be good”.

• Be positive and appreciative when they do well.

• Prepare a warning that there is going to be an activity change (eg: in 5-minutes we will brush our teeth and sleep or if when the timer goes off, we will clean up.)

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Emotional problems are a normal part of growing up. In addition to normal stress situations, DMD young people are also prone to illness-related stress.

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Some tips:

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• Really listen to the boy. Try to see it through their eyes.

• Help the boy learn to recognize and name his emotions. By naming them they can become more manageable.

• Solve problems together. Search for a solution together or find a few options and let him chose.

• Set limits to his behaviour. Make clear that his feelings are not a problem, but some behaviours based on those feelings are not acceptable.

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Duchenne behavioural disorders

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Attention deficiency and hyperactivity disorder (ADHD), autism spectrum disorders and obsessive-compulsive disorders appear to occur in Duchenne muscle dystrophy slightly more frequently than in the general population. Nevertheless, one should not lose sight of the fact that most of the DMD children do not have these conditions. Be careful not to jump to premature conclusions. If in doubt, the child can be tested at a specialized centre. These concerns can also be discussed with the treating clinicians of the NMRC, which may be referred to for testing.

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Autism spectrum disorder (ASD)

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ASD occurs in 3% of DMD boys compared with 1% of normal population. ASD causes disruption in three areas particularly:

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1) social interactions

2) verbal and non-verbal communication

3) imagination

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Typical possible behaviours include:

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• Limited interests and repertoire of activities

• Repeating the same behaviour (stereotyped behaviour)

• Difficulty with change

• Focused on details

• Focused on themselves

• Cannot move or move others

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ASD is neither preventable and nor is it curable. The problems persist throughout life. An important point is to adapt the environment to the person with ASD. Treatment is primarily aimed at preventing exacerbations.

Further information can be found here: http://www.eurekaonderwijs.be/leerstoornissen/autisme

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Attention deficiency with hyperactivity disorder (ADHD)

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A study showed that 11.8% of boys with DMD receive ADHD diagnosis versus 3% to 6% in the normal population. ADHD is also the most common behavioural disorder in children. There are 3 types, namely a hyperactivity disorder, an attention disorder (ADD) and a combined type.

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In ADHD, there are problems with:

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• Emotional regulation (self-control)

• Stop single-use behavior

• Flexible thinking

• Planning and troubleshooting

• Learning own mistakes

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Further information can be found here:

http://www.eurekaonderwijs.be/leerstoornissen/adhd

http://www.eurekaonderwijs.be/leerstoornissen/add

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Obsessive-Compulsive Disorder (OCD)

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Obsessive compulsive disorder is categorised as one of the anxiety disorders. It is characterized by compulsive thoughts and forced acts designed to relieve fear and worries. This may explain why OCS is more common in boys with progressive disease like Duchenne. In the normal population, OCD occurs in 2.3%. In DMD this is about twice as frequently. But this means that it occurs only in a small percentage (4.8%).

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Talking about Duchenne at school

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For both parents and children with Duchenne, confidentiality is very important! For parents, it is often very difficult to figure out what exactly they tell their son about his illness. Do not just assume that the boy knows everything about his diagnosis and what it means. A meeting before the start of the school year is important to discuss with the parents how to deal with the condition in the classroom and what is told to the other students. For older students, it is also important that they agree with what is told to the class. They must be left free and should not experience any pressure to say anything. In addition, they must be able to choose whether to be present at this conversation or not.

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A general discussion about diversity can be a good reason to address this topic. In younger children, it can be said that everyone has their own needs. Some need glasses to see properly, others need extra help to learn to read or write, some need a wheelchair because their muscles are not strong enough. Young children do not have to receive too many details and certainly no future references.

Children who understand what is going on, can help and defend their classmate rather than bullying. An open, honest communication within the confines of the parents agreed confidentiality and sensitivity is therefore essential! It may also be possible to assign a buddy that helps open up heavy doors, carry book bags, ... This can easily be made into a kind of job.

 

Addressing practical challenges in the classroom

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Since Duchenne is a progressive disease, needs will change over the years. Therefore, we divide these issues out by age. The progression of the disease is not uniform and can be faster or slower in some boys than others.

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Ages 4 to 7:

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• Pulling themselves up into a sitting position

When needed, make sure your student can grab something to support them when they try to sit up. This is particularly important in toilets. A Certainly in toilets this is not an unnecessary luxury. A large toilet space can also be handy. Maintaining balance and sitting up are much more difficult for a child with DMD.

 

• Standing up from the ground

Standing up from the ground is very difficult and tiring for them. The best support is a sturdy, well-supporting chair with armrests. Even so, the number of activities they are asked to do on the floor is best limited. When there is an activity on the ground, try not to isolate the boy by placing him alone on a chair.

 

• Lifting objects, opening heavy doors, carrying bookbags, ...

A student with DMD is already experiencing muscle weakness and can easily lose his balance. A buddy can help him if needed. Try to make the 'buddy' job something fun and special so it will be a job and not a chore. It is also important to listen to whether the child asks for help. Sometimes they will want to do certain things themselves, which is important for their own self-worth.

 

• Walking long distances

Try not to force a student with DMD to walk long distances. Keep in mind that 'long' has a different meaning here than for a healthy person. A pupil with Duchenne uses up his energy much faster than a healthy person. Their energy should be stored for playing and participating with the other children in class. A wheelchair can be used for covering distance, even when the student is still able to take steps. Most children want to play so much that they often go beyond their limits. If they have to exert themselves even more, for example to travel a short distance from a playground to a car, this may not be possible. They may then suddenly complain about pain in their legs. This may appear that he is trying to exploit the situation but this is not the case. The desire to play drove them too far and when that motivation goes away, they can suddenly "feel" that their energy is gone. A child with Duchenne may want to move but cannot force his muscles because they do not recover well.

 

• Stairs

At every age, stairs should be avoided for children with Duchenne. Stairs increase stress on the muscles, causing muscle damage to accelerate. Make use of elevators or sloping surfaces wherever possible.

 

• Play time and physical education

Maintaining balance and climbing is difficult for children with DMD. Parents, counsellors and physiotherapists can often give advice on what can be done and what cannot. Often the child himself with have a good assessment of what he can do. They tend to fall a lot and often become cautious. Let children play but do not force them. Falling presents greater risk to them than for other children.

 

• Special hand grips for pencils

These can be a great help for writing

 

Ages 7 to 11:

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• Changes in posture

During this time, the pelvic muscles become weaker. As a result, balance becomes increasingly difficult. The boys will compensate for this by adjusting their center of gravity. As a result, his posture changes when he walks and he will look for support from the wall. This often seems unusual to other students, which can lead to questions and comments. A sensitive conversation between student and classmates help ease this tension.

 

• Getting up out of a chair

This also becomes more difficult and the boys will often need of something to hold when getting of a chair. In the toilet, this is particularly important.

 

• Getting up off of the ground

This is now really difficult for him and is important to keep in mind. Do not try to isolate the student, but think about an activity in which everyone can participate equally.

 

• Age-appropriate information

It's important to provide age-appropriate information to your students so that understanding, inclusion and friendships are encouraged. Keep the confidentiality agreement with the parents in mind though.

 

• Physical education

Because of the increasing muscle weakness and the disturbed balance, it may not be possible to participate in a normal way. It might be more useful to schedule a physical or occupational therapy session during this time. It is difficult to think of other ways to include them in these sessions.

 

• Difficulties with long note-taking sessions

The student may have to use a computer in the classroom.

 

• Slower in setting up for class

Getting and preparing books or closing books needs more time because of the muscle weakness. Keep this in mind. A buddy can also help with this.

 

• Decreased breathing function

Breathing becomes more difficult, and at night there may be oxygen shortage. This can result in symptoms such as headache, concentration disorders and fatigue. If you notice this, please report it to the parents in case they have not noticed them. It may be necessary to intervene with night breathing support. Be aware that colds and flu, due to the reduced respiratory muscle strength, can lead to pneumonia. A DMD student therefore will stay at home sooner to take care of these diseases.

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Ages 12+:

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• Mobility

Try to provide adequate space so that a wheelchair or scooter can enter the classroom easily. Hallways can be very busy, so you can consider letting him in and out of the class before the rest of the students. If you go on a class trip, try to plan a trip that is wheelchair accessible.

 

• Stairs

Stairs should be avoided. Sometimes it is difficult for boys to accept help at this age even though they need it. If he still persists in trying to use a staircase, for safety reasons he should be accompanied by an adult.