First of all, welcome to this section of our website. Like many things in life, the more prepared you are to care for your child, your family and yourself, the more empowered you will become.
The rollercoaster (in the dark)
The rollercoaster (in the dark)
Families tell us that having a child with medical complexity feels like being on a rollercoaster… in the dark (think Space Mountain at Walt Disney World!). You probably did not ask for a ticket on this rollercoaster (and perhaps you have a fear of heights) but once you are on it, getting off is a challenge. This rollercoaster ride involves:
- Ups and downs, sometimes quite steep
- Abrupt, surprising curves, drops and lifts – and because you are sometimes in the dark, you cannot always see what is just ahead…
- Trying to comfort your scared, anxious child (and other family members) – while you are feeling the same yourself!
- And hopefully, with time… moments of joy and happiness
The truth is that many children and their families stay on the rollercoaster for a long time. How do you make the journey as smooth, safe and joyful as possible? In this section, we provide practical tools and tips on surviving, sometimes thriving, on the rollercoaster ride. You do this by becoming empowered.
Empowerment is a complex process, where an individual becomes strong and more confident, usually by living and learning through stressful experiences and strong emotions, like the ones we describe below. Very few parents of children with medical complexity start out being empowered, it is a skill that most parents develop over time.
When you first learn that your child has a serious medical problem, you probably will have a jumble of emotions; sometimes all at the same time! This is often overwhelming. There is no rule book or set process for coping, each person works through these emotions in their unique way. Click on the link here from the US Centre for Children with Special Needs to watch videos (English only) of other parents discussing:
How will I ever do this?
What is my role on the healthcare team?
Where do I begin?
How will I change over time?
Stay tuned to hear the viewpoints from Quebec and Canadian families (in French and in English).
We know that some emotional states are more functional than others – meaning that even while feeling strong emotions you are able to get up and care for your child, your family and yourself. Other states (like Shock and Anger, below) can paralyze and handicap you if they last too long or don’t leave room for positive thinking. It is hard to make balanced decisions for your child if you are too angry to learn more about what is going on.
There is no easy way to avoid most of these emotions (some parents try – that’s called Denial… another paralyzing place if you stay for a long time) and you will want to find ways to work through these strong feelings.
Shock: No matter how calm and collected your personality, almost everyone feels the jolt and then the numbness of learning that their child has special needs. Be careful! When this is your main reaction, it is very difficult to listen/learn new information and it will be challenging to complete even the easiest daily tasks. While the initial shock is inevitable, it is not a very functional state for a parent to stay in for a prolonged period of time.
Denial: Sometimes a little bit of denial can go a long way in building hope and positivity; in small amounts it may help you get through your day. In large amounts, however, denial, by ignoring or avoidance of true facts, can be dangerous to you and your child. Denial of your child’s actual health status and prognosis is rarely a conscious decision; some parents find a dysfunctional refuge in this coping mechanism. It is easier to fall into this pattern when your child does not have a specific diagnosis. Like shock and anger, spending a long time in denial does not benefit your child or yourself.
Anger: This is a common and very understandable reaction. Parents tell us that they are angry about so many things – from the many gaps in our healthcare systems to having to “fight” for their child to anger over the diagnosis itself (or lack thereof)… the list goes on and on. Some anger, if it is respectfully channeled, can be a motivation for change. On the other hand, anger can be extremely damaging if it translates into any of the following:
Disrespectful communications (shouting, name-calling, threats, etc),
Physical threats or actions,
Impacting on personal or professional relationships.
Fear, guilt, confusion, helplessness: These are all common reactions that parents experience, all related to the uncertainty which defines the lives of many children with complexity. Fear of the unknown often exceeds fear of the known. Two main positive coping mechanisms that exist are Building knowledge and Acquiring skills, discussed in more detail below. Guilt can be a pervasive emotional reaction, especially in those who feel that they are falling short of meeting their responsibilities and even if this is far from reality. With uncertainty, fear and confusion it is not surprising that most parents experience periods of feeling helpless – feeling that a situation is out of control. While this is common in families “new” to parenting a child with medical complexity, it may reoccur during acute deteriorations, for example, during an intensive care unit hospital admission.
Sadness, disappointment, loneliness: These emotions exist for many parents at many different levels. Families (and sometimes the children themselves) may feel sadness and grief with their day to day realities, compromises or longer term prognosis. When a situation is focused on what the child cannot do, especially in comparison with similarly aged peers, this sadness can be quite acute. To avoid this, families may purposefully isolate themselves, limiting situations that are likely to bring on sad emotions. Loneliness also arises because parents who have a child with complex medical needs ARE BUSY! Even if they are able to find homecare support, raising a child with special needs requires an enormous amount of work, on a daily basis. (We have not yet met a parent of a child with medical complexity who tells us that they are well rested…)
Gratitude, joy and love: Last but certainly not least, parents tell us that they also experience these powerful positive emotions. Children, with their resilience and courage, are inspiring to their families and their healthcare teams; often this is what sustains parents through challenging times. Optimism and paying attention to the positive are effective coping strategies for many parents.
There is a lot written about how parents can become empowered; the basic themes are shown below. The best resources are those written by parents like you. See Links of interest to connect to a variety of trusted resources including messages from other parents. The path to empowerment is not a straight line. Between family members, there may be large differences in how each person is dealing with the stresses of caring for a child with medical complexity. Each person has to find their own path. Your family, friends and healthcare team can also help to empower you by supporting you and helping you build capacities in:
Developing a sense of self-awareness
Identifying, setting and accomplishing realistic goals
If you are struggling to cope with your day or find yourself overwhelmed with sadness or anxiety, please speak to a healthcare professional and ask for help.
Meeting your basic needs. In general, empowerment starts with being able to meet your basic needs (and that of your child and family). That is, it starts with having food and clean water, shelter and clothing. Having a source of income, especially through some sort of meaningful work, builds a sense of autonomy, a feeling that you are capable of taking care of yourself and your family.
Developing a sense of self-awareness usually happens as parents slowly adapt to their new reality of caring for a child with specialized needs. Parents quickly discover their strengths, sometimes surprising themselves with their own resilience. Stress (and chronic fatigue) also expose our intrinsic weaknesses within ourselves as well as in our pre-existing relationships with others (like in a marriage). Self-awareness means that you are aware of your emotions and how your emotions are influencing your behavior and decisions – this is powerful.
Defining your values, like being aware of your emotions, is a step towards being able to set realistic goals for yourself and your child. Values are the things that you deeply believe in, for yourself and for your child. The more that you know exactly what your child needs and your own priorities, the better able you will be to advocate for your child.
Building knowledge, like acquiring needed skills, is a gateway to empowerment. The more knowledge that you have about your child and your child’s conditions, the better you can help your child. Your healthcare team can help to provide you with information and to navigate the materials. Many children’s hospitals have a library or a family resource centre where a librarian can help you find what you are looking for. With knowledge will come the confidence that you are doing what you can to support your child. Helping you build knowledge and skills is what this whole website is about!
Acquiring skills. Many parents start their empowerment journey here because, practically speaking, their child has special care needs on a daily basis and these needs must be met. For example, if a child is dependent upon nasogastric feeds, then that is a strong motivation for a parent to learn how to insert a nasogastric tube and how to use it safely. Many parents are scared and anxious at first, and are worried that they will not be able to learn how to safely care for their child at home. That is one of the reasons that we developed these standardized, evidence-informed methods of care which explain the different types of care with simple steps. They are meant to be used as a support for the hands-on training that is provided by your child’s healthcare team.
Most hospital teams now use mannequins or models so that parents can practice as many times as they need to build confidence and skill. If you find that you are very anxious about learning a new type of care, it may be helpful to speak to another parent who has also had to learn how to provide that care. Speak to your child’s healthcare team to learn more about acquiring skills.
Rarely, parents are upset or angry that they are expected to provide some or all of their child’s care. Homecare supports vary from region to region but in all parts of Canada, parents are expected to provide a substantial portion of their child’s daily care. This may mean that at least one parent must stay at home to care for the child on a fulltime basis.
Almost all parents eventually become experts in their child’s care. Ironically, because they are doing the care on a frequent, often daily basis, they develop a high level of skill through repetition that often surpasses that of the healthcare professional who may provide that care much less often. (This can sometimes cause conflicts when a child is re-hospitalized… see the section Collaborating and communicating for tips on how to handle a situation like this.)
Lastly, acquiring skills also means maintaining and updating your skills as time goes by. Be prepared to brush up on your skills when there are changes in your child’s needs, the methods or equipment of care.
This is a portion of the website that we hope you will visit often. We have provided links to trusted resources, many of which have pioneered by parents for parents. Don’t hesitate to ask your healthcare team for specific resources that match your needs. Contact us if you find a resource that you believe is worth sharing with other families.