Guide for parents after diagnosis

This section is for friends and family. Many close friends feel uncomfortable asking questions about the development or course of your child’s illness. They also often feel powerless because they do not know how to help you. Do you notice that someone who is close to you and cares about you finds it difficult to talk to you or offer help? Then have them read this special article.

The most important advice for the environment of a family with a child who requires more care is: do not be afraid to ask questions about the child’s disability or illness. Openly tell them that you want to know more. Follow the development of the child together with the parents. Remember that they have less time to do fun things than before. Do not compare your own children with the child who has a disability / illness. Provide emotional and practical support where possible and make it a habit to regularly call just to say “hello”.

Parents of children who have disabilities or chronic illness expect that they will be supported by people who are close to them, both emotionally and practically. How can you help?

Listening is important. Be available, take the time and listen actively (so ask open questions, reflect and summarise) and be attentive. Make more time than usual to do something with the child. The limitation / illness can mean that tasks take more time and / or can go slower. For example, it may take longer to get in and out of the car or the house. Offer to go to a doctor, therapist or care provider once to get a better understanding of the child and the condition / illness.

You can provide reliable help to parents on a regular basis, such as:

1. Shopping.
2. Taking care of the other children or do household chores.
3. “Being there” to take care of the children during an emergency situation.
4. A weekly visit at a certain time and doing the laundry, tidying up or helping out in the garden to reduce stress.

Every family needs a different kind of help depending on the situation. If you don’t know what the parents need from you, just ask them.

Parents don’t want sympathy! What they want is empathy and it takes quite some effort from you to understand how they feel and what they go through. Therefore try to “walk in the parents’ or the child’s shoes” for a while. Perhaps the list below can help you to understand the stress, on top of the daily hassle, as described by parents of a child that requires extra care:

1. Frustration due to uncertainty about what will happen to the child in the longer term and difficulties in finding clear answers.
2. Feelings of guilt because you have to divide attention between the child who has extra needs and the rest of the family.
3. The continuous question why the child has the disability / illness and whether it could have been prevented.
4. Dealing with the chronic sadness and loss of the ‘normal’ child that the parent does not have.
5. Worries about whether the child will be accepted by the environment.
6. Worries about future plans for adulthood (education, work, family life).
7. Worries about the severity of the condition.
8. The fatigue associated with the continuous giving and arranging of daily care, which goes beyond the normal expectation pattern for the child for the coming years. Families may have difficulty feeding, dressing, toileting, bathing, heavy lifting, playing, therapy, putting on splints, eating, playing, etc. In addition, arrangements and “battles” with municipalities over facilities, transportation, etc.
9. The pressure of attending many therapy sessions per week, plus the appointments with specialists, hospital, results and tests.
10. The infinity of it all …
11. Less freedom of choice and freedom of movement because you always have to think about the special needs of the child.
12. Sadness and frustration because the child is not going to roll, crawl, sit or walk, or because it is not talking, cannot do everything it wants.
13. Possible marital problems because your partner does not accept the child, does not understand you or does not help you plus extra stress such as lack of sleep.
14. Dealing with the effects on brothers and sisters. How do they feel and how do they deal with the difficulties?
15. Other children cannot understand why mom and dad spend more time on the child with … Feelings of guilt, rebellion or rivalry.
16. Uncertainty about a new pregnancy. Can it happen again with the next child?
17. The feeling of being “trapped” due to physical exertion and the extra organisation needed for outings (from simple picnics to longer planned vacations). There are concerns about sufficient space in the car, finding a place with good facilities, accessibility, toilets; accommodation; problems with eating out and specially prepared food. All of these factors make it difficult to plan in the long term and make it less likely for the family to make a spontaneous decision to go out.
18. Always putting one’s own needs aside to meet the extra needs of the child.
19. Financial problems (home modifications, special cars, medicines, facilities, special toys).
20. The doubt or inability to return to work due to the treatment and special needs of the child.

“What can I do for you?”
In her book “What can I do for you. Support during mourning”, writer Karin Kuiper has collected some wonderful ideas that are very easy to realise and that we would like to share with you:

1. You can help by “being there”. Call, stop by, go out or a coffee, send a card.
2. Take parents with you for walking, cycling, dancing.
3. Help out during birthday parties. This way the real hostess / host can catch up with the guests.
4. Ask about the interview with the director / doctor.
5. Stop by on special days or send a card / call to let them know you are thinking about them.
6. Secretly plant flower bulbs in the parents’ garden.
7. Take the children to buy a surprise for their father or mother or make a beautiful “work of art” with them.
8. Offer to go to the recital at music school, the competition at the gym club, the cup competition at the football club or the school musical.
9. Offer practical assistance in the form of cheques that can be exchanged at the issuer.
10. Send a card with ten self-written compliments.
11. It is easy to maintain intensive contact with one person. But for someone with a child with a disability / chronic illness, it is not easy to keep a whole circle of friends / environment happy. Be generous in maintaining the friendship.
12. Reach out on wedding days and the children’s birthdays.
13. Make sure that you are just pleasant company.
14. Take a freshly pressed smoothie with you when you come over. Tasty and healthy!
15. Talk about the fun and less fun sides of your own life. The world keeps turning and in the end everyone wants to move on with their life. It’s nice to stay involved in the lives of others. That way you prevent loneliness.
16. Call in the first few weeks after hearing the diagnosis.
17. If a parent cries, don’t pacify them, but touch them gently to show your support.
18. Do not break the friendship without explanation. The children will not understand where everyone went. This will cause confusion.
19. Take the dog out for a walk (or take the parent out for a walk).
20. Give / borrow the book that you recently enjoyed so much yourself.
21. “Being there” means listening without judgment. Listening is paying attention with your mouth shut. Let them cry or get angry. It can be nice to let the emotions go. Listen and offer a shoulder and some recognition.
22. Eat together regularly.
23. Send a regular message to let them know what’s happening in your life. Send photos of holidays, children and grandchildren or places of interest, nice videos or websites.
24. Give a medium with your favorite music. Go to a concert together. Give a medium with your Top Ten of tear-jerkers. Forward links to YouTube videos, videos and internet sites to share the music of your favorite artist.
25. Ask again how the reports were, whether the exam was passed and whether everyone was “over”.
26. Spontaneously ask parents for a picnic in the woods or on the beach. Go fly a kite with them.
27. Offer long-term disaster relief assistance with leaking gutters, flooding washing machines and defective dishwashers and such. Give a voucher that can also be redeemed in five years’ time – then parents will know that they may also ask for help in a while.
28. Offer to go to the swimming pool or amusement park – the expedition will really be a trip!
29. Arrange an evening of film – and also arrange the babysitter!
30. Call on the parents’ help every now and then.
31. Take over the daily life of the parents for three days and send them out to recover.
32. Give something beautiful. A bouquet of flowers, a special photo in a frame, a beautiful plant, a separate postcard, a tea cup with hearts.
33. Help with the preparations for birthdays and holidays.
34. When visiting a hospital, send a “goodnight” text message, or “a success today in the morning!” – message.
35. Mourning and processing are not a bleeding finger that needs a patch, not a wound that is quickly closed or leftover. Take the sadness and the process seriously. Accept that it will take a while before it gets “better” and the other person becomes cosy and cheerful again.
36. When parents come to visit, pour the juice into a wine glass and set the table festive for a simple lunch.
37. Tell an inspiring story about your “hero” or your hobby.
38. Wash their car (unsolicited) for them.
39. Offer specific assistance. “Next week / time / holiday I’ll be careful” “Shall I cook for you tomorrow?” “Can I help you with the garden?”
40. Provide a warm house and a bunch of flowers, or a Welcome Home card, when you return from the hospital.
41. Find a ridiculous photo of the parents or yourself, and show that it can always be worse!
42. Give parents the chance to sit on a couch all day long with a book, film, magazine or laptop and a pot of tea. No shopping, cleaning up or care obligation for them.
43. Organize an egg hunt at Easter.

Of course every comment from a good heart is welcome. Certainly, if you know each other well and know what it means to you. Yet it is better not to respond in the following ways:

1. Deny the disability or illness.
2. Show anger.
3. Express fears aloud.
4. Criticize the chosen therapy / treatment.

A reaction such as “Don’t worry, there’s nothing wrong” or “He’ll grow over it” can hurt parents. No matter how well-intended, you are thereby denying the severity of the diagnosis they have just received. Even “Nowadays there is as much as possible” is a form of denial. Not everything can be solved with medical treatment. It is possible that you deny the seriousness yourself, which is a sign of compassion. First, try to deal with your own sorrow. Or look for “fellow sufferers” in the form of other family members or friends of a family with a disabled child /child with a chronic illness.

It is sweet and understandable to get angry about the diagnosis that your friends or family have received. But venting your anger towards the child’s parents, even if it is aimed at a doctor or hospital, for example, has a negative effect. Anger is not an emotion that parents can use, so try to keep this to yourself.

After the diagnosis, there is often one fear that dominates: how should it go later? “What will happen to this child when he is five years old, or twelve, or 21? And what if I am no longer there myself? “Then other questions arise:” Will he ever learn? Will he be able to go to school? Will he be able to love, live and laugh and do all the things we had planned? “Other unknown things also cause fear. The parents fear that the diagnosis of their child might be the worst. Fear can paralyze them. Therefore, make sure that you do not feed the parents in their fear. Listen to it, say you understand, but do not participate in predicting or discussing doom scenarios.

Because parents often come across “unknown” due to their child’s disability / illness, the advice of professionals is very important to them. They can also opt for a not yet known or alternative therapy, or treatment. As a family member or friend, it is important that you support the advice and efforts of professionals – trusted and respected by parents – even if you disagree with what they do. Your acceptance and support is necessary and valuable for families with special needs.

It may be clear: a child with a chronic illness or disability brings stress, sadness and fatigue with it. Fortunately, parents do not always feel this stress continuously or equally. As in any other family, feelings of happiness, achievement, pleasure and satisfaction are certainly also experienced. The most important message for friends and relatives is to consciously see how life can be for the family. And how you can help by continuing to talk, by offering practical help and by showing the same love or friendship as before.

What you have to do.

1. Be yourself
   You do not suddenly have to behave differently because the child of your friends / family has a disorder or a chronic illness. Are you the friend that makes harsh jokes? Then you do not suddenly have to be more responsible. Are you the sweet overprotective mother? Then do not suddenly become tough or strong. Try to find your own way in helping the parents. Don’t think: “How should I respond, how should I handle this?” But rather: “How do I want to respond?”
2. Show how you feel
   Real love and friendship mean: being happy when the other is happy and being in pain when the other is suffering. By showing your own emotions about the diagnosis or the problems with their child, the parents can feel moved and strengthened. It is not the intention to “saddle them” with your sorrow, (and that they should comfort you instead of the other way around), but you certainly do not have to hold back your tears. This way you show that you understand somewhat what they are experiencing and that you have a lot of sympathy.
3. Sound the alarm on time
   Parents with a child with a chronic illness or disability can feel so much stress that they go beyond their limits without realising it. As a good friend or family member, you can see how things are going from a distance. Keep in mind that the situation can be ten times more difficult than the parents would have you believe. Do you see that they keep too many balls in the air, are exhausted or almost never smile again? Take them apart to talk about extra help. Whether that is more babysitting or a conversation with a psychologist or family therapist.

What you shouldn’t do

1. Avoid the subject
   The child in question can become an “elephant in the room”. They can be that subject that is not being discussed, in order not to ruin the atmosphere or because you think it will make the parents unhappy. Sometimes parents actually find it nice not to talk about it for a while, but often talking can be a relief. Just ask: “Do you want to talk about it?”
2. Think that everything stays the same
   Busy parties, joint meals or vacations … For parents of a child with a disability or chronic illness, those are the moments they often don’t like. They are usually more concerned with their child than enjoying the company and socialising, or there are too many incentives for the child. Don’t blame them if more and more often one of them doesn’t come along or if they just stay at home. Try to find other moments to have a good time together.
3. Thinking for the parents
   “I won’t invite them to my child’s third birthday, because that’s too confronting for them.” ‘Parents of a child with a chronic illness or disability can end up in social isolation. Therefore, always keep communicating openly and do not be afraid to get “no” for an answer. At least you have invited them in any case.
4. Not give a baby shower gift if there is a danger that a baby might not live
   No matter how serious the situation is, it hurts when people assume the worst, while parents themselves hope for the best. So, nevertheless give a gift, go on a maternity visit and stay in touch!