Please note: This resource is meant to provide simple suggestions for parents to try – especially parents who may be facing a new diagnosis or witnessing behavior issues in their child with Duchenne for the first time. These suggestions may not be appropriate for all children, especially those who may be a little older or those with more severe issues. We encourage you to explore the Opposition & Aggression area of PPMD’s website for additional information, and consult with a qualified medical professional who can assess your child and suggest treatment options.
Encouraging positive behavior
You may be able to relate to terms such as the ‘terrible 2s’, the ‘trying 3s’, the ‘questioning 4s’ and on, because at every age, children go through periods of challenging behaviors. Some of these behaviors may include angry outbursts, inflexible thinking, and/or impulsive behaviors which are difficult for parents to deal with.
Children with Duchenne are no exception. Parenting your child(ren) with Duchenne is tough because it is difficult to see them as a ‘normal’ child when we tend to look at everything through the lens of the diagnosis. You may have experienced thoughts like, “I shouldn’t let him do that, but he has Duchenne”, and it just feels like you should give in to whatever behavior is occurring. And it is hard to be ‘tough’ when your heart is breaking.
What you must remember is that your child is the same child that you had before the word Duchenne entered your vocabulary. One of the most difficult things to do is to treat this child the same way you treat your other children, and the same way you treated this child before the diagnosis. You are the parent and families need rules. Without rules and acceptable behaviors, the entire family will struggle.
Children want limits, and they will push and push until they figure out where your limits are. Making rules and following them will help the child know what is appropriate and what is not. Every time the child does something that is not appropriate, make a rule about it and do it immediately after the behavior happens. Rules help take the guess work out of just how far the child can push.
One of the hardest parts of parenting is disciplining – sticking to the rules and following through. Sometimes we find ourselves making a quick statement out of frustration, ‘we are never going to have ice cream again’ or ‘we are never going out again’, statements that are not accurate, made when you are pushed to the edge. Children do tend to push your buttons to see just how far they are able to push the rules and you will often find it is difficult to be strong. Parents often say, “I shouldn’t let him talk to me that way, but I’m sure he is frustrated” or “It hurts my feelings when he yells at me, but using his voice is my son’s only way of controlling his world.”
In the short term, giving in may make your child happy and may avoid angry discussions, but, in the long term, it’s hard to live with a child who’s always been given into and who is allowed to treat the people around him in any manner he chooses. And if the child does not learn ‘NO’ at home, they will never accept rules outside the home. Unacceptable behaviors will make school and friendships ever more challenging.
Parenting is one of the most rewarding, yet challenging things we tackle in our lives. Add in Duchenne, and it can seem nearly impossible. Unfortunately there is no instruction manual. What we do have are some useful tools other parents and experts have recommended that may be helpful for you and your partner. These are ideas that start everyone in the family on a level playing field, with rules that don’t play favorites – something particularly important for the siblings of a child with Duchenne, when the household can feel like it rotates around doctor appointments and other accommodations.
- Rule Wall: This is a list of what behavior is acceptable at home and what is not, and should be visible to everyone. Rules are added over time as situations arise, and they apply to ALL members of the family.
- Schedule Stick: The Schedule Stick is an outline of the activities of the day. This helps to alleviate frustration for the child as he/she understands the schedule and what happens when, as well as helps make transitions from one activity to another easier.
- Visual Timer: A visual timer shows the child how long a given task will take and helps the child anticipate the time involved in specific tasks. Helping your child grasp the concept of time will help them understand what that time has run out.
Positive Consequences & Thinking Time
Such as “If we follow our schedule stick without tears and frustration, If we leave the playground with a happy face, then we get to do… (whatever is positive for your child – special time with mom/dad, special tv show, special choice at dinner, etc.)”
If the consequences described do not work, you might consider utilizing a “thinking chair” or “thinking time.” Thinking time means sending the child to a specific chair or room, a quiet space without technology or other comfort devices, to stay quiet and ‘think’ about the behavior(s) that required time out.
For instance, we don’t get to watch television or have dinner if the rules are not followed. It is ok to go to bed without dinner for one night. It is ok to cry, and should not result in giving in. These are also good rules for the rule wall and make sure all parents/caregivers are onboard (good cop, bad cop does not work for anyone).
For some children, taking away things does not work. Often it feels like nothing impacts them. Sometimes a reward of the very smallest thing makes a difference. It might be time– getting to lie in bed by mom/dad or getting mom/dad to read three books instead of two. Or sitting in a special chair at dinner may be important.
Engaging the Entire Family
If it makes sense, consider letting the child make a family rule and try to engage all family members in decision making whenever possible. One idea may be to consider asking the child or agreeing that the person in the family who follows the rules and has a good day, gets to choose the dinner menu.
In Duchenne, there are often so many obligations – medicines, supplements, night splints, doctor visits, clinical trials, etc. Giving the child(ren) power, enabling him/her to make choices about dinner, dessert, books to read, or even a sleepover for the weekend with cousins or friends, can make a world of difference in the middle of a stressful situation.
Sometimes the things we think are big are often small things to our child. They want our time and our attention, and for us to be proud of them. These are great rewards. But great rewards come only when the rules are followed.
There are other professionals who may be very helpful on this journey, but they may all not be available at your clinic and/or they may have very long wait lists for appointments. It is important you check with insurance to fully understand what is covered within your policy and with your institution to see what resources are available to you/your child.
- A psychologist is a professional who is qualified to assess, diagnose and treat psychological disorders (i.e., anxiety, obsessive compulsive behaviors, depression, etc.). These disorders are general in nature.
- An educational psychologist is interested in discovering how your child learns (their memory, conceptual process and unique learning styles) and how the school/classroom might be able to help them learn more easily. They will be able to assess your child’s history, intellectual abilities, and basic academic skills.
- A neuropsychologist is able to assess, diagnose, and treat psychological disorders stemming from medical diagnoses and conditions. For example, a neuropsychologist can assess the cognitive, behavioral, and emotional issues associated with Duchenne (or other diagnosis affecting the brain). Neuropsychological testing will help to capture your child’s developmental, medical, social, and psychosocial profile, as well as assess their intellectual, academic, attention, sensory motor, language, visuospatial, reasoning and problem solving, memory, and fine motor skills. After the evaluation, the neuropsychologist will be able to give you a comprehensive report of their findings, as well as suggestions for further evaluation and/or treatment.
While you wait, be sure to see what help is available through your school. Most school systems have counsellors and/or educational psychologists who may be able to start the testing process. Getting this accomplished through your school will save you time and money, getting resources for your child that much quicker.
The above information was provided by Denise Gruender, founder of ABC Educational Services in Matthews, NC. Denise has over 20 years of experience working with special needs children.