‘Your child has been diagnosed with…’ – these words sound like a sentence. Whenever parents hear them, they may feel like the ideal child they expected is gone, and that things are never going to be the same again. The parents have to rebuild their everyday lives. Now their lives will always centre around their disabled child, regardless of the type of disability.Subject literature sometimes compares the process that the parents go through after their child is diagnosed with developmental dysfunctions to the Kübler-Ross’s model of grief.
After the diagnosis, the parents can no longer foster their vision of a perfect child. For a child to develop correctly, they need to accept the limitations that come with dysfunctions and disability. The extent to which the parents have accepted the diagnosis greatly affects their child’s rehabilitation, education and therapy. However, information about the particular stages of grief may prove helpful to those parents who want to understand their own emotions and feelings. The length of each phase is different for each person.
1. Denial. A stage dominated by incredulity and the conviction that there has been a mistake.
We may feel that what is happening is just a bad dream and that it cannot be true. A likely response is automation, that is, we perform all our everyday activities normally, but we tend to distance ourselves from the situation, as if it does not concern us at all. This way, we try to separate ourselves from the information that has turned our lives upside down. We think about other, often more trivial, matters. We do not plan for the future.
What to do?
It is important to try to go through this stage as quickly as possible so that we do not postpone collecting the documentation needed to begin rehabilitation or therapy. We must confront our child’s diagnosis and stop running away from information that causes us to have negative emotions, such as fear, anger or helplessness.
2. Anger. During this stage, we keep thinking: Why has this happened to me?
I did my best. Everything was fine. Anger and appears next, along with the awareness that we are unable to undo the diagnosis. We are angry at everyone and everything. Negative emotions can be caused by other parents, who have ‘healthy’ children, our spouse or partner, if they dare to do something else, or even by us ourselves, if we start thinking that it is our fault that our child is suffering. We may blame fate, a higher power, the environment, the civilization, or the technological progress. We do all this to explain the situation to ourselves and to protect ourselves from terrifying emotions and, most of all, from feeling helpless. Searching for an explanation is a natural human habit. The situation is easier to tackle if we know the cause of our child’s disability. Consequently, we may begin to believe even the most absurd explanations. It is important to allow yourself to openly express your negative emotions. If you feel like crying, cry. If you feel like shouting, find a good place and shout. If you want to talk, meet up with someone who is close to you, someone you can comfortably share your true feelings with without pretending. Building up negative emotions only destroys us psychologically, and may lead to health problems, such as psychosomatic disorders. Extreme emotions do not make us evil or aggressive. Rather, they are a natural reaction, and as such, we should not fear them or be ashamed of them.
What to do?
It is important to allow yourself to openly express your negative emotions. If you feel like crying, cry. If you feel like shouting, find a good place and shout. If you want to talk, meet up with someone who is close to you, someone you can comfortably share your true feelings with without pretending. Building up negative emotions only destroys us psychologically, and may lead to health problems, such as psychosomatic disorders. Extreme emotions do not make us evil or aggressive.
3. Bargaining. At this stage, we are convinced that we can ‘change’ the child.
We actively look for ways of working with the child, throwing ourselves into a frenzy of new activities and classes. We collect the documentation needed to participate in them. Many parents go beyond a single type of therapy and seek various alternatives. Sometimes, we even hide the fact that our child takes part in other activities. We hope that by doing all this, we will be able to miraculously ‘cure’ the child. We desperately wish that everything that has happened so far would turn out to be a mistake. Unfortunately, our motivation is misplaced. We risk overtaxing our child with too many different activities, and our will to fight for the child’s well-being and good functioning may cause an interest in many therapeutic options or trends that do not work together at all. Excessive effort may cause stagnation or even regress in the child’s functioning. We are also likely to put faith in experimental or unconfirmed methods of therapy. We act as if we are possessed. On the surface, we have a lot of strength and are full of optimism, but at the same time, our actions cost us a great deal of effort.
What to do?
At this stage, it is worth seeking out support groups and reading the stories of parents whose child has a similar dysfunction to our child’s dysfunction. We also should not forget about our own lives. We dedicate most of our time to our child and to providing him or her with care in every aspect of functioning. However, we should also give ourselves some time for our favourite activities and meeting with friends and family. Importantly, any failures or difficulties we experience lead to the next stage, which is…
We feel completely exhausted. and, sometimes, burned-out. Support from our community is very important at this stage. We are overcome with regret and sadness. We feel lonely and wronged by fate, and that others do not understand us. We lack the motivation to take action, which we may consider pointless. Sometimes, we discontinue some activities and stop noticing our child’s progress. We do are not happy about our child successes, because we expect the effect of our work and sacrifices we needed to make to be spectacular. As a result, we think with great fear, anxiety and pessimism about the child’s future. We refuse to acknowledge any advice or encouragement. This attitude may cause us to gradually distance ourselves from other people.
What to do?
We should not hide or quash our feelings, but rather, we should be open to them. We can successfully enter the next stage (acceptance), only if we fully realise the cause for our feelings, that is, the fact that we have finally let go of our vision of a completely healthy and correctly functioning (according to the accepted standards) child.
5. Acceptance. We consciously acknowledge that ‘Yes, my child has problems and is different, but I love them, and I must do everything to help them be happy and be themselves as much as possible’...
Rather than obsessively filling the child’s time with classes and therapy sessions, we should spend time with the child and be there for him or her. We should find out how many hours of support our child needs, and how much support he or she is able to bear. It is worth asking a psychologist, a pedagogue, or a therapist for opinion. This does not mean that we are going to only feel unconditional love towards and acceptance of our child throughout day and night. Rather, this stage means our acknowledgment of the fact that we may experience a range of emotions (which we are fully entitled to experience) in response to the various situation we encounter in our lives. Acceptance also involves the ability to ask for help, whether for the child or for ourselves. We come to terms with the fact that, even though we put all our efforts into the matter, we are not always able to objectively assess what is best for the child. Acceptance means first and foremost the ability to talk about the child’s health and dysfunctions truthfully, without the (natural) tendency of parents to exaggerate our child’s abilities. This way, we can be sure that any actions we take ourselves or any actions other people take to help the child will be effective.
The above five phases, which we go through during the extremely difficult period of life that is the acceptance of our child’s disability, are not absolute truth, that is, exceptions can happen. Still, these five phases are observed quite often, and being aware of their existence can help us cope with our emotions.
You have the right to make mistakes – no mistake can ever erase what you have achieved before it. Everyone can sometimes be exhausted or have a bad time; what is important is to begin each day with willingness for action and to keep on developing your child’s potential as much as you can.