Guide for parents after diagnosis

“You are never alone when you have a disability or illness,” people sometimes say. Your child’s diagnosis also has an impact on everyone in the house. When it comes to your first child, you will need to find a new balance as husband and wife. If you already have children, the whole family will have to get used to the new situation. Fortunately, most families quickly find a nice balance again.

You want to help your child develop fully. You may give 100% of yourself for that, but if you focus all your energy on one person in the family, nothing else remains. Therefore, make sure that you create a harmonious home in which everyone receives the love, attention and support that he or she needs, including you!

If you react differently to the diagnosis than your partner does, it can cause tension. If one of you reacts more emotionally and the other prefers to be more practical, give each other plenty of room and keep telling each other how you feel and whether you want to talk about it.

It is also very important to accept each other’s way of processing the diagnosis. Don’t get angry if your partner just cries or if he or she just can’t stop ‘Googling’. Decide together how best to care for your child and family. Make sure that you are clear about your expectations of each other, and keep doing fun things together, even without children. That way you will become a strong team.

When you come home with your new child, the other children may sense from you that there is something wrong and may become a little alarmed to hear that their new baby brother/sister has a disability or is unwell.  How do you explain this to them?  Of course, everyone parent must find their own way to do this, however, here are a few tips that may be of help.

1. Be honest.
2. Be clear.
3. Toddlers.
4. School-aged children.
5. Siblings.
6. You set the tone.

Answer your children’s questions as simple and honest as possible. Don’t know the answer? Then just say that. Children pick up everything that happens around them, so shielding them is not a good idea. If you do not explain why you are sad, children will become more concerned, think they have done something wrong or think something terrible is going to happen.

Don’t know where to start explaining? Then keep the following set-up:

1. A “this is it” statement: “Your brother’s kidneys are not working so well and that is why I feel sad and worried.”
2. Explanation of what is going to happen: “She is not sick and will not die, but she does need help to learn things and that is why we go to the doctor so often.”

How children react to a brother or sister depends on their age. For toddlers the whole world revolves around them. It may be that they are more involved with their toys than their brother or sister. At the same time, they may feel that it is their fault that the baby is “sick.” As a parent, you often feel when you have to leave your toddler alone or explain at his level what it is like.

Older children can react a little differently. Of course, it depends on the sensitivity of your child, but often you see that an older brother or sister is very protective. Incidentally, this concern can just as easily turn to shame about their brother or sister. Sometimes even on the same day, children are simply erratic. The following also applies here: keep talking about what’s going on. Your “that’s it” sentences help your child accept the situation and accept their brother or sister.

Your other children are “brusjes”, or brothers and sisters of a child with a disability or chronic illness. This group of children, who of course are a bit special themselves, receives more and more attention and all kinds of fun initiatives are created for them, such as the Facebook group on www.facebook.com/brusjes. Especially when your children grow up, it can be instructive to read a book about it which contains advice from psychologists, brusjes or other parents.

Both with your “normal” children and with your “special” child, the following applies: you set the tone when it comes to emotional behaviour. How you deal with your child’s disability / illness is a statement and inspiration for the people in your household. The more normal you deal with the situation, the less traumatic or dramatic it will be for them. It is understandable that you cannot always be cheerful, you are only human. And you certainly don’t have to pretend. Just try to stay positive and help your children to live the most pleasant life they can.

The world does not stop turning and you are not a terribly insensitive parent if you adjust the rhythm of your child to the needs of the rest of the family, including yourself! Make sure your child participates in daily life as much as possible. Sometimes he/she will have to adjust to (the speed of) his/her brother(s) and / or sister(s), and sometimes the other children will have to wait a little longer for their turn. But don’t worry, the happiest and most successful adults with disabilities or chronic illness say that their parents treated them just like all other children in the family.

1. Personal attention
   Spend time with every child, even if it is only ten minutes a day. Every child needs undivided love and attention to feel special. Give them your undivided attention and show that you listen and understand your child, by repeating what they tell you.
2. Be flexible
   Balance the needs and wishes of your child with those of other family members. Can you not swim with the disability or illness (because of the cold water or anything else)? Then look for an alternative family outing that everyone can join.
3. Let your children help
   Involve your children in the care of your child who has special needs. This reinforces your children’s empathy and will strengthen the relationship. Let them think along to help your child and give them time to try out their own attempts.
4. Involve other adults
   Share your unique family situation with all adults in your children’s lives and explain what influence your child has on your other children. This will make others understand your child better.
5. Arrange good childcare
   Sometimes you cannot have your child taken care of by your normal babysitter. In this case, make sure you have various childcare options. You can get special babysitters via organizations such as MEE, the national help guide or Per Saldo. Also think of a call among students of physiotherapy, occupational therapy, nurse education or orthopedagogics. Another possibility is to investigate whether you can solve this through the Personal Budget, such as babysitting by nurses. This may be pricey, but it can be an enormous reassurance and you don’t have to arrange anything. Through the interest group, you can get in touch with other parents, who may have tips on how to handle special childcare. Links of the relevant organisations are listed in this series of articles.