Guide for parents after diagnosis

There you are, in the hospital corridor, with the diagnosis still echoing in your head. Maybe you already expected it, maybe you are in shock, but the big question is: how do you deal with this and how do you tell your family such as grandfathers and grandmothers? In this article, we try to answer those very first, sometimes overwhelming questions.

You may feel enormously protective and loving towards your child but you are extremely angry because your child has this condition or chronic illness. You may continue as if nothing is wrong, or act as a “stand-by” zombie. All these feelings are very normal. It could take a month to give your child’s disability or chronic illness a place in your life, but also years. Yet parents say that the intensity of grief diminishes over the years. You will have good days and bad days, but most will be normal, just like in any other family. It is very normal to have feelings of:

1. Denial.
2. Confusion.
3. Powerlessness.
4. Disappointment.
5. Rejection.

“The doctor must be wrong.”

You do not understand what has happened and what is going to happen. You may not understand what the doctor or specialist is talking about, worry a lot, sleep poorly and therefore have trouble making decisions during the day. In short, you are confused and that is very understandable.

Your child has this condition or chronic illness and you cannot do anything about it except incorporate this fact into your life and adjust your life accordingly. However, you would like to know what you can do and in your opinion, you do not get enough tips from professionals.

Of course you are disappointed because this has to happen to your child, or because your child got this diagnosis and that hurts.

It is not uncommon to initially reject (the disorder or chronic illness of) your child, so you certainly should not feel guilty about it. However, it is possible to not only reject your child, but also your family, friends or specialists.

Everyone has their own way of handling violent or emotional situations. We call that ‘coping’ strategies. You will find that some ways of handling things work better than others. If you notice that a problem or worry is diminishing instead of getting worse, you know that something works.

1. Talk.
2. Cry.
3. Read.
4. Pray.
5. Contact with other parents.

For many people, talking and sharing helps to process the diagnosis. This can be with your partner, but also with family, friends, or a social worker. Talking to other parents who have just heard the diagnosis can also help.

Many parents suppress their feelings because they see it as a sign of weakness. However, even the strongest parents of children with a disability or chronic illness should not be afraid to show their emotions. So don’t be afraid to cry if you feel like it. Learn to deal with natural feelings of bitterness and anger. It is normal to feel this when you have to let go of your wishes and dreams that you had for your child. Recognize that anger and try to let it go. If this does not work, seek help. Even though you cannot imagine it now, life will get better and you will feel more positive again!

Some parents read everything about what is wrong with their child. They Google around a bit, visit a Mytylschool and ask professionals thousands of questions. Collecting information about the condition or illness and preparing yourself for the future is a great way to deal with the diagnosis. But some parents also choose to limit the flow of information to what they can handle. So don’t feel cowardly or weak if you don’t want to confront the future.

In addition to praying or meditating, actively talking to a spiritual supporter can also help. Call, write or visit the person you trust or get along with well. It is nice to share your pain with someone who is positive about life. Do not feel bad that you “normally” do not actively practise your religion and now suddenly ask for help. A minister, pastor, rabbi, imam, or pandit is there for you unconditionally and can give you the support you need.

Sometimes it is nice to talk to parents who have an older child with the same disorder or illness as your child. They can tell you what they encountered in the beginning and how they solved practical or emotional issues. Select someone as a “mentor” to help you through the most difficult periods. Blowing off steam or receiving a pep talk over a cup of coffee or over the phone can make the difference. This can also be a parent of a child who has a different disability / illness, because care, processing and practical problems are often the same. They understand you in a way that your best friend, parents, brother or sister can never do. After all, they have been in the same position once … And of course, you can always contact a patient interest group that can get you in contact with other parents.

When you hear the diagnosis, first of all you will feel sad about it. But the people who love you usually feel the same pain, fear, confusion and disappointment. They worry even more than you sometimes. Therefore it is not always easy to inform family and friends and to take them with you in the process. Your own parents, brother, sister or close friends can disappoint you. For example, because they are afraid to pick up or babysit your child. That’s a shame, but remember that this happens in all families. Part of that disappointment is also in the grieving process of these family members, such as the difficult denial and anger. The best thing you can do is clearly tell what is wrong with your child and how you want to deal with it yourself. For example: “He is likely to develop slowly and may not be able to do everything, but we love him and treat him exactly like our other children.” Send photos just like you would with a “healthy” child. Make it clear to everyone that you have a nice child that you are happy with. Then your environment will behave accordingly. Do you have a lot of trouble with the limitations of your child in the beginning? Indicate this honestly and explain that you still have to process it yourself. Anyway: send a clear signal of how you want people to deal with the situation.

Are you deeply troubled by the diagnosis or do you notice that you can hardly complete any daily tasks like working or looking after your family? Then you probably need more than extra support of another parent, friend or family member. Fortunately, a lot of professional help is available. In the article about how others can help, we discuss who you can turn to if you can’t handle it anymore. From the general practitioner and psychologist to special bodies.

Crying, laughing, talking, praying … everyone chooses their own way of coping. For example, your partner may respond in a completely different way than you do. Remember one thing: there is no right or wrong way to handle your child’s diagnosis and sometimes it takes years before you can come to terms with it. Allow yourself some peace and the time to find out what works best for you.

The people who love you and sympathize with you, feel many of the same emotions that you feel: pain, fear, confusion, disappointment or worry. Finding a way to provide information to family and friends without being overwhelming, is not always easy.

It is useful to teach family members how to see change / progress in your child. Because he/she may respond, but not always, unlike the other children they raised. Only when they understand – and learn to wait for – reactions that might come slower or differently than with other children, and learn to see your child’s subtle signals, will they become less frustrated. Communicate clearly what the diagnosis will cause for your child and include them in your child’s development.

Remember that family members are also “extra” eyes, ears and hands. They might surprise you with their ingenuity as your baby or child grows and needs certain things, such as toys that you can operate with one hand. These may come from the shed of that handy uncle or from the sewing machine of that sweet aunt! But also think of a babysitter if your child cannot go to school again.

As soon as your child develops differently or looks different, you will also have to “raise” strangers. A simple question like “What’s the matter with your child?” can be very annoying on some days. You may receive even more confrontational are comments such as: “Oh well, it could have been worse,” or “You get the child you can handle.” Always remember: people mean well, but they just don’t understand. They do not understand that even though it could have been worse, you must deal with what could have been better at this time. They do not understand that you do not know at all whether you can handle it and they don’t understand that sometimes you want to scream or flee from them. And what do you say when they ask ‘What does your child have?’ That depends on the moment, whether you have time to answer and whether you want to answer. Because you don’t really have to be a saint, you can choose not to answer and walk away.

Perhaps it deeply touches you how people respond to you or your child. But many people’s reactions to serious problems are caused by a lack of understanding or fear of the unknown. Many people do not know how to behave when they see a child with a (visible or audible) disability or visible aids. Sometimes they say something strange because they’re nervous. Although you cannot determine how people react, you can determine how you deal with looks or questions. Try not to worry about people who are unable to respond in ways you might prefer. As a parent of your child there are better ways to use your energy.

No matter how you decide to respond in a certain moment, remember that nobody wants to teach the rest of the world. The condition or illness is a part of your child, just like the color of their eyes or hair. However, it says nothing about who your child is.

1. Live day to day. Don’t let the fear of the future paralyse you. Live day by day and try to enjoy what is going well today. Worries about the future can exhaust you, and you already have less energy than other parents. Moreover, it is a waste of time, it is impossible to predict the future.
2. Keep talking to each other. Over the years it appears that many parents do not talk about their feelings. Sometimes they make themselves appear stronger than they are (especially towards each other). But the better couples (and their other children) can communicate in more difficult times like this, the greater their joint strength.
3. Be realistic. Try to accept life as it is. Recognise that there are a number of things that you can change and some things that you cannot change. The trick is to learn which things you can change and then only do something about these things. You can let go of the rest.
4. Avoid pity. Self-pity, pity from others, or pity for your child is actually always a hindrance. Pity always points out the negative. If you notice that someone (or yourself) is constantly emphasising how sad you or your child are, say something or do something about it. Sympathy for the nasty and the fun moments is, of course, nice, but make sure that those feelings are balanced.

1. What’s wrong with him? Children in particular will often ask this on the street if the restriction of your child is (becoming) clearly visible. For example if your child is going to use an aid. It is handy to have a standard simple answer ready. For example: “His muscles do not work well, but he just understands everything.” Or: “He understands less than other children. But he is very happy. “Or:”He gets tired a little faster, but he is very happy!”
2. Isn’t it great, all the things they come up with nowadays? Of course you are also happy that there are all kinds of technical possibilities for your child, if necessary. But many bystanders think that everything will be fine thanks to the technology. Don’t feel like nodding “yes”? Then let it be understood that you really don’t have to be extra thankful for effective technology: “Well, we couldn’t live without our laptop or Google Maps anymore, could we?”
3. Did you not know that in advance? Many people think that you “should prevent” getting a child with disabilities. You can still perform all kinds of tests during your pregnancy, right? Before you know it, you end up in a complex discussion after such a question. Fortunately, it is easy with various diseases / disorders, which you cannot detect at all in the belly. So ”no” (and just keep walking).
4. Will you be reimbursed for everything? It might sound stupid, but with such a question it seems a bit like they are asking about your salary slip. Although it is often asked out of concern, you do not have to explain your financial situation. You can answer honestly: “That depends on the Social Support Act civil servant or the municipality.”
   Is that YOUR child? If you walk on the street with your other child or children, nobody will ask if they are yours.
5. hat would be an absurd question to just ask a father or mother. As soon as you push a wheelchair or walk with a child who is “different”, it is apparently permitted. The best way to answer is to ask a question, like “Yes, why?” Or “Why do you ask that?” You make people think about what they actually asked about.
6. Do you get paid for it? If people know that you receive a Personal Bound Budget you can get this question thrown at your feet. Unfortunately, we know from experience that if you answer this question with yes, you can quickly get a skewed relationship with the person asking the question. What bystanders can also express are comments such as “You get a lot of tools for free.” Some people unfortunately only see the “benefits” of a disability or chronic illness. For convenience’s sake, the disadvantages are sometimes forgotten. However, you do not have to be ashamed or accountable in any way if you receive financial support for the many hours you spend on your child. Just like you do not have to account for the medical or paramedical aids that your child needs to be able to simply participate in society.

N.B. The answers above are just examples. Find answers for yourself that are close to your situation and that suit you. And always remember that you do not have to answer if you do not want to and that it is also fine if you sometimes do not answer so “politically correct” …

1. Time is on your side. Fortunately, the cliché is true: time heals many wounds. Of course, it may not be the case that your child’s life will go without its challenges, but over the years you will discover different ways to deal with these challenges.
2. Take care of yourself. In times of stress, everyone reacts in different ways. However you respond, the most important thing is to keep taking care of yourself.  Get plenty of rest, eat well and take time for yourself.  It is equally important to create a good network of people you can rely on. This can be a good friend, family member or a fellow parent to talk to.
3. Stay positive. Staying positive in spite of everything is your best “weapon” against the challenges you will face. By focussing on the positives rather than the negatives, you will find that you will far more easily cope with any difficulties that come your way.
4. Enjoy your child. The fact that your child is different from other children does not make your child less special. Your child is a unique individual,  so enjoy the love you share for each other as well as spending quality time together.
5. www.schouders.nl: Experience Center for parents is an umbrella foundation with a cross-disorder platform for and by parents of care children (children with a physical disability, mental disability, chronic illness and/or developmental disorder). Many questions within these families are not limited to disease-specific themes. Disorder-transcending themes that these parents struggle with – and have found solutions for – often relate to the family situation, relationships, finances, relaxation and education,  Within the Parents Experience Knowledge Center, parents can benefit from each other’s experience and the group can target group needs.