Learning, Behaviour, and DMD

Learning

For this page, the term learning describes the way a child’s brain can take in information from the world around them (talking, pictures, sound, etc.) and make sense of it. It also describes how their brain can use this information to plan and produce a response or action. Sometimes your health team might use the word cognition or cognitive- which has the same meaning.

Different brains will learn differently. It can be useful to learn about how an individual child’s brain learns as it can tell us the best way to give them information, to allow them to be successful in achieving goals and participation in daily life.

Behaviour

On this site, behaviour describes the way a person acts or conducts themself, it may also be described for children with the word engagement.

A child’s behaviour is what we see them doing as they interact with the world around them. It may be how they participate in tasks, communicate with others, the way they move their body, complete activities, speak or respond.

Behaviour can be used in a negative way but this is not the case for this webpage. It is a descriptive word, without judgement. See the next question for more details.

No.

All children will have times when the behaviour that they show us is difficult or not what we would want to see. However, the information on this page assumes that a child has a reason for the behaviour they are showing us. It may be said that the behaviour we see is the child’s way of communicating to us that they are having difficulty with something.

For example – a child may be frustrated, not understand what is expected of them, feel overwhelmed or anxious and "act out" in response.

The purpose of this page is to offer some strategies to help families of children with DMD to figure out:

1. Why they may be seeing certain behaviours from their children
2. What may be causing these difficulties for their child, and
3. Where they can get support to help build their skills and cope with learning and behaviour interactions throughout their day

Behaviour versus Engagement

Engagement is perhaps a better term to use than behaviour because we are simply discussing the way a child interacts or engages with the world around them and what that looks like.

For example: A child may have more difficulty engaging in some situations- such as the classroom where they may be getting into trouble. However, they may engage more easily in other situations- such as playing freely with a favourite toy at home.

The term behaviour is being used on this page as it is more recognisable.

It is common for children with DMD to also experience some issues with learning and/or behavioural regulation. It can be useful to learn how your child’s brain functions close to their time of diagnosis. This will help you and your support team build a plan to support your child, setting them up to succeed as they move through all aspects of their life.

In DMD, we know the missing protein (called dystrophin) plays an important role in both muscle AND brain function. The exact details of how it impacts the brain are still a little unclear but there are 3 areas that may be more challenging to young people with DMD:

1. Organising information received from the world around them

When there is a dystrophin problem, as in DMD, organising information can be more difficult for some children. It can be particularly difficult for some children to perform when asked to manage lots of information at once or when they are expected to complete a task in a setting that is busy or loud.

For example: trying to follow a physio assessment in a busy environment or to sound out a complex word or sentence at school.

2. Language and communication skills

People with DMD may have difficulty receiving, understanding, and processing verbal (spoken) information, particularly when it’s more complex or when it has multiple stages (eg, “do this, then that, and this” etc). Children with these difficulties can get frustrated and tired trying to understand what they are hearing and may seem like they are ignoring instructions or actively refusing to follow.

For example, you may say “Go upstairs, brush your teeth, put your pyjamas on and get into bed.” Your child might find this too difficult to follow and do only part of the task, get distracted, forget or refuse to do it altogether.

A person with DMD may also have difficulty telling the difference between different speech sounds. They may have difficulty repeating verbal sounds accurately or learning to read.

3. Social interaction, attention and mood

In some cases, people with DMD may be more immature than their peers or have difficulty in social settings.

Behavioural and (occasionally) autism spectrum features occur more frequently in children with DMD than what is expected in the general population. However, these may only be mild behavioural issues that do not lead to a formal diagnosis and in most cases will respond to supportive strategies (detailed below).

Children with DMD may be more likely to have difficulty with attention, and/or mood, as with anxiety and depression which are likely to be aggravated by fatigue, both mental and physical in nature.

All of these challenges can make it more difficult for a child with DMD to settle into new, challenging environments like kindergarten and school. They may have to work harder to understand, concentrate and interact socially. Providing additional support can be enormously useful to ensure they settle in well wherever they are through their day.

A reminder: support is available

In Australia, we have expertise, funding and support to help children with DMD who are experiencing any of the above difficulties. Communicating with their healthcare team and school/kindergarten is important to access the support which can set them up to succeed and fully participate with confidence in all aspects of their life.

(This answer was compiled with help of the PPUK Learn and Behaviour toolkit for DMD, which can be accessed in full here: Toolkit-spreads (gosh.nhs.uk))

As your child’s carer or parent, you are likely to be a good judge of whether your child would benefit from extra assessment and support with their learning and behaviour to achieve their best.

However, your child’s school, kindergarten or health care team are also a very good source of guidance. They may reach out to you but if you are not sure, don’t hesitate to reach out to them.

Another indication might be if your child is frequently expressing concerns about school. For example: telling you that they “got in trouble” at school, that they dislike school, or are reluctant to attend.

Preschool-age

Some specific things to look out for:

• Delays in speech and language
• Difficulties follow spoken instructions, ignoring or resisting you or becoming frustrated
• Limited eye contact
• Lacking interest or falling behind in early reading
• Difficulty coping with change in routine
• More than a normal level of tantrums or outbursts of aggressive behaviour
• Passive behaviour, difficulty communicating with others, unwillingness to socialise or make friends

School-age

You may find that your child is:

• Receiving negative feedback or being disciplined regarding behavioural incidents at school
• Overly tired toward the end of the school day
• Not wanting to go to school or wanting to be picked up early
• Developing a dislike of learning,
• Being disciplined frequently at school with detention, time-outs, even suspension

Or having difficulty:

• Engaging in class or following instructions
• Sitting still
• Socialising or making friends
• Frequent social conflicts
• Regulating their emotions

The above are some possible signs that your child may benefit from additional support to build their skills in learning and positive behaviour.

(This answer was compiled with help of the PPUK Learn and Behaviour toolkit for DMD, which can be accessed in full here: Toolkit-spreads (gosh.nhs.uk))

A good place to start is with your lead doctor (usually a GP or neurologist) and your child’s school/kindergarten to build a picture of your child’s learning and/or behaviour challenges.

Your doctor may recommend any of the following depending on the most appropriate direction for you and your child:

1. Referral to a Paediatrician:

May be useful to evaluate if:

• a diagnosis is apparent which may help plan ongoing support and management
• medication may be useful to your child

2. Referral to a Psychologist

May be useful:

• to access a cognitive (learning) or neuropsychological assessment
• to understand how your child’s brain learns and responds

3. Referral to a speech and language therapist

May be useful:

• to evaluate if communication difficulties are playing a role

4. Request that school refers for a cognitive assessment:

• As an avenue to access learning assessments required to apply for funding for additional teaching support at school (eg, a teacher’s aide)

Depending on the recommendations arising from the above referrals, a management plan can be built to work with your child and provide the support precisely where they would benefit from it.

Support around learning and/or behaviour will look different for each child and family. It will be influenced by both the reports from your child’s family and school/kinder, along with the results of any learning assessments.

Your child’s doctor (neurologist/GP/paediatrician) and allied health therapists** will work with you and your child to build a plan based on your child’s learning and behaviour goals.

A paediatrician may identify a diagnosis, recommend allied health therapy** and, if appropriate, discuss the role that medication could play in supporting your child.

Allied health therapists** will use results from both assessments and discussions with you and your child to build a plan to work toward your child’s lifestyle goals.

School-based assessment may use results to apply for funding to increase teaching support for your child at school- usually in the form of a teacher’s aide.

What might allied health therapy look like?

Your allied health therapists** may provide ongoing therapy which is specific to you and your child’s goals. It may consist of individual strategies, resources and/or skill-building therapy targeting areas such as:

• Positive behaviour support
• Communication
• Emotional regulation
• Routines and planning
• Confidence and independence with everyday activities of daily living
• Social skill development
• Improved mental health and anxiety management

Funding

Allied health therapy** is most commonly funded through the NDIS scheme. Talk to your specialist healthcare team for more information about this.

**Allied health therapy may include, but is not limited to: psychology, occupational therapy, speech and language therapy, positive behaviour support therapy, play therapy, physiotherapy.

Preschool is the ideal time to begin considering whether your child may benefit from additional support with their learning and/or behaviour.

See "How do I know if my child would benefit from assessment into their learning and behaviour traits?" (question above) for more details.

Starting the process

1. Talk to your child’s neurologist or regular doctor regarding your concerns
2. Talk to your child’s kindergarten staff to get their impressions
3. Consider what behaviours you see at home and how your child is coping with daily family life

I think my child will need learning and/or behaviour support at school

If you have met with a paediatrician or psychologist:

• request that they provide a letter to the school at enrolment requesting this additional support with learning. The school can direct you from here.

If you have not met with a paediatrician or psychologist:

• it is important that you request a cognitive assessment from the school when you enrol them in your chosen school (if one has not been completed already).

The school may require supporting letters to get this process underway. Therefore, it is recommended that you discuss your concerns with your kindergarten teachers and doctor before enrolment as soon as possible, they may be able to provide important supporting documentation.

Note: this information may vary from state to state. This article was written in Victoria.

It is recommended that any concerns that arise related to your child ‘keeping up’, ‘fitting in’, or engaging at school are taken seriously and responded to quickly and respectfully.

This is done by communicating.

Encourage open communication between yourself, the school and your healthcare team about any challenges your child has with learning and/or behaviour.

Some questions you could ask?

• Where does the school, family, healthcare team feel your child is at with their learning and/or behaviour skills?
• Where or when (if at all) do the difficulties arise?
• Does your child have enough support to engage in their learning at school?
• What would the school need to lodge a funding application for increased support (if it is needed)?
• Previous assessment:
  • has your child received a cognitive assessment before?
  • When were these assessments done and what sort of support plan was devised?

See "Who can help my child build their learning and/or positive behaviour skills?" (question above) for more details.

When you and your child are referred to see a psychologist, you will work together using what the psychologist knows about the brain and what you know about your child to brainstorm ideas to manage the challenges your child is facing.

There will be a particular focus on your child’s strengths and what is important to your family.

Common concerns addressed by Psychologists include planning, organisational and attention difficulties at school, behavioural difficulties, memory difficulties, and fatigue management.

Learning and behaviour assessments

Cognitive and Neuropsychological (neuropsych) assessments are performed by a trained psychologist and are described below.

Cognitive assessment: is a less extensive testing process that is used to determine general thinking and reasoning abilities (also known as intellectual functioning or IQ).

Intelligence testing can look at different areas of your child's learning abilities including:

1. Verbal comprehension: understanding spoken information, thinking in words and expressing thoughts in words
2. Perceptual reasoning: the ability to use visual information, and to solve visual problems
3. Working memory: ability to hold, understand and respond to verbal (spoken) information
4. Processing speed: ability to scan, process and identify information accurately.
5. Fluid Reasoning: the ability to find solutions to new problems without having practised or experienced them before.

Neuropsychological (neuropsych) assessment is a more extensive and comprehensive testing process, usually looking at whether there is a medical diagnosis to explain the challenges a child is experiencing.

This assessment is conducted by a specifically trained neuropsychologist. It can take most of the day (6-7 hours), is expensive and can involve a long waiting-period to access. A discussion around funding and referral for this assessment with your health team is useful to support this process.

Both assessments

Both assessments can help to determine a child’s strengths and challenges to guide the development of a treatment plan. Your healthcare and school teams can guide you on which is best and refer you accordingly.

Only psychology support, without formal assessment

Sometimes a formal assessment performed by a psychologist is not necessary, but the parents and/or child can still benefit from meeting with the psychologist for some problem-solving.

Steroids help people with DMD stay stronger for longer and delay the complications of DMD such as needing a wheelchair, scoliosis and problems with the heart and breathing.

However, steroids may cause side effects that require monitoring, some of which may include changes to behaviour and mood.

Behavioural problems which may include your child being more emotional and active than normal or an increase in temper tantrums and explosive behaviour, can appear in the first six weeks after starting steroids and often settle down after that period. If they do not, the team can suggest strategies to minimise and manage this problem, as detailed on this webpage.

Main message

• Keep open communication with your neurologist about what behaviours you are seeing day-to-day and what you are finding challenging.
• Concerns about your child’s learning and/or behaviour should always be taken seriously, and responded to quickly and respectfully.

Communicate:

Talk to your healthcare team and outline these challenges. They may be able to build a plan to make it more achievable to participate in clinic appointments. Some hospitals already have a Behaviour Support Plan process in place for this purpose, if not you can build one on an individual basis with your team.

Community allied health:

It can be useful to work with your allied health therapists** to build a plan for attending clinic appointments. This may include resources such as social stories, schedules, or sensory tools. They may also work ongoing on strategies or skills to get your child through the experience with confidence.

Your therapists may also be able to provide the clinic with a sensory profile or behaviour support plan which if it can be accommodated, may put your child at ease during their visit. Talk to them about this for more information.

Resources:

Visit Extra resources for families and children for a library of resources that can assist with your visit to clinic. This includes:

• Social Stories
• Read-together fact sheets
• Diaries
• Clinic passport