How to support parents after their child's diagnosis?
A guide for family and friends.
Parents in crisis – how to understand them?
Phases of the crisis
The behavior and emotions of a person who has received information about their child’s special needs may sometimes be incomprehensible to you. Experiencing a crisis (and the grief that sometimes results from it) consists of various phases that can occur separately or together, in the order given below or in a different order.
shock
denial
anger
depression
acceptance
Other reactions
In addition to the reactions listed above, other reactions may also occur, such as:
blaming oneself or others
avoiding the subject or reluctance to talk about anything else
a sudden surge of energy or, conversely, powerlessness and helplessness
clinging to any source of hope, even irrational ones, or giving up completely
Unmet needs
In the first days or weeks after their child’s diagnosis, parents are often not yet aware of their needs or are not ready to talk about them. However, as they gradually find their feet in the new situation, they will become increasingly clear about what they need. It is also important to remember that over time, their fatigue may increase, as may their feelings of isolation and helplessness in the face of new challenges.
How to support parents?
Remember to always ask whether the form of support you choose is appropriate for the person in question.
For example, some parents may not want to receive additional information about their child’s illness because they are already overwhelmed by the knowledge they have received from other sources. Others may not appreciate spontaneous visits, even if you have the best of intentions. The basis of wise help is, above all, communication. Talk honestly with your loved ones about what they need. Don’t be afraid to tell them that a request is beyond your capabilities.
Below you will find practical tips to help you support your loved ones who are facing their child’s diagnosis wisely and empathetically. You will learn what can bring them real relief and a sense of support, as well as what to avoid so as not to burden them during this difficult time.
Emotional support
- Allow your loved one to freely express all the emotions they are feeling. Try to accept different reactions and emphasize that they are completely natural in the current situation.
- Regularly let them know that you are there, that you care, and that you are interested in how the situation is developing and how they are feeling.
- Suggest going for a walk together or prepare a warm meal.
- Notice and appreciate the child’s progress and recognize their qualities other than their illness or disability.
- Appreciate the skills and qualities that have become apparent during this difficult situation (e.g., patience, curiosity).
- Sometimes, a silent presence and acceptance of difficult feelings mean more than a thousand pieces of good advice and words of comfort.
- Do not force the different stages of grief.
- Do not criticize, judge, or fear what you hear, even if some words or emotions may be shocking or incomprehensible to you.
- Do not try to comfort your loved one at all costs by convincing them that “everything will be fine.”
- Do not suggest that the child will grow out of something or that the parent is exaggerating or inventing problems. Only doctors can give a reliable opinion on medical issues.
- Try not to make your loved ones into heroes or martyrs. They are normal people who usually did not choose the situation they find themselves in and do not have sufficient resources to cope with it.
Information support
- Create a place where you can share knowledge about your child’s diagnosis or contact details for recommended specialists or support organizations (e.g., a Facebook or WhatsApp group).
- Help find parents in similar situations so that they can support each other. Sharing experiences, emotions, and practical tips can bring enormous relief.
- Avoid information chaos and help organize knowledge and contacts.
- Don’t overwhelm parents with too much information—give it to them gradually, depending on their needs.
Logistical support
- Bring warm soup for everyone in the household once a week, or prepare or order frozen dinner portions.
- Offer to help tidy up the house or pay for a cleaner.
- Offer to help with transportation, e.g., to specialist appointments, school, or children’s activities.
- Don’t leave your parent alone with organizing doctor’s appointments, paperwork, or daily chores.
Material and financial support
- Give the parents useful products – diapers, interesting toys, medical products for the child. First, of course, you need to find out what is most needed.
- Organize a fundraiser among family, friends, or at work to cover the costs of diagnosis, treatment, rehabilitation, or specialized equipment.
Do not organize material or financial support without the knowledge and consent of the parents—respect their dignity and privacy.
Respite support
- Take some of the burden off parents when it comes to caring for their child and give them some space to rest, go on a date, or take care of important matters.
- Pay for a massage (or other form of relaxation) for a loved one and look after their child while they are away.
- Find an experienced caregiver who can look after a child with special needs for a few hours so that the parents can leave the house, take a bath, or get some sleep.
Don’t assume that parents can manage on their own – don’t wait for them to ask for help, offer it on an ongoing basis.
