Help by others<\/p>\n
This section is for friends and family. Many close friends feel uncomfortable asking questions about the development or course of your child\u2019s 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.<\/p>\n
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\u2019s 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 \u201chello\u201d.<\/p>\n
How can you respond better?<\/strong><\/p>\n 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?<\/p>\n Emotional support<\/strong><\/p>\n 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.<\/p>\n Practical support<\/strong><\/p>\n You can provide reliable help to parents on a regular basis, such as:<\/p>\n Every family needs a different kind of help depending on the situation. If you don\u2019t know what the parents need from you, just ask them.<\/p>\n Empathy<\/strong><\/p>\n Parents don\u2019t 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 \u201cwalk in the parents\u2019 or the child\u2019s shoes\u201d 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:<\/p>\n <\/p>\n What can I do for you?<\/strong><\/p>\n What can I do for you?\u201d <\/p>\n How should you not respond?<\/strong><\/p>\n 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:<\/p>\n <\/p>\n Deny the disability or illness<\/strong><\/p>\n A reaction such as \u201cDon\u2019t worry, there\u2019s nothing wrong\u201d or \u201cHe\u2019ll grow over it\u201d can hurt parents. No matter how well-intended, you are thereby denying the severity of the diagnosis they have just received. Even \u201cNowadays there is as much as possible\u201d 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 \u201cfellow sufferers\u201d in the form of other family members or friends of a family with a disabled child \/child with a chronic illness.<\/p>\n Show anger<\/strong><\/p>\n 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\u2019s 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.<\/p>\n Express fears aloud<\/strong><\/p>\n After the diagnosis, there is often one fear that dominates: how should it go later? \u201cWhat will happen to this child when he is five years old, or twelve, or 21? And what if I am no longer there myself? \u201cThen other questions arise:\u201d 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? \u201cOther 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.<\/p>\n Criticize the chosen therapy \/ treatment<\/p>\n Because parents often come across \u201cunknown\u201d due to their child\u2019s 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 \u2013 trusted and respected by parents \u2013 even if you disagree with what they do. Your acceptance and support is necessary and valuable for families with special needs.<\/p>\n Finally<\/strong><\/p>\n 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.<\/p>\n Do\u2019s and don\u2019ts for friends and family<\/strong><\/p>\n What you have to do.<\/strong><\/p>\n <\/p>\n What you shouldn\u2019t do<\/strong><\/p>\n Guide for parents after diagnosis Help by others This section is for friends and family. Many close friends feel uncomfortable asking questions about the development or course of your child\u2019s 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 […]<\/p>\n","protected":false},"author":2,"featured_media":2316,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[355],"tags":[],"class_list":["post-12003","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-after-diagnosis"],"acf":[],"yoast_head":"\n\n
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\nIn her book \u201cWhat can I do for you. Support during mourning\u201d, writer Karin Kuiper has collected some wonderful ideas that are very easy to realise and that we would like to share with you:<\/p>\n\n
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\nYou 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\u2019t think: \u201cHow should I respond, how should I handle this?\u201d But rather: \u201cHow do I want to respond?\u201d<\/li>\n
\nReal 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 \u201csaddle them\u201d 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.<\/li>\n
\nParents 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.<\/li>\n<\/ol>\n\n
\nThe child in question can become an \u201celephant in the room\u201d. 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: \u201cDo you want to talk about it?\u201d<\/li>\n
\nBusy parties, joint meals or vacations \u2026 For parents of a child with a disability or chronic illness, those are the moments they often don\u2019t 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\u2019t blame them if more and more often one of them doesn\u2019t come along or if they just stay at home. Try to find other moments to have a good time together.<\/li>\n
\n\u201cI won\u2019t invite them to my child\u2019s third birthday, because that\u2019s too confronting for them.\u201d \u2018Parents 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 \u201cno\u201d for an answer. At least you have invited them in any case.<\/li>\n
\nNo 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!<\/li>\n<\/ol>\n","protected":false},"excerpt":{"rendered":"