“Before I got married, I had six theories about raising children.
Now I have six children and not a single theory”- Eleazar Harash
Having a child is like driving on a liquid highway. You have just caught the direction and whoop – the asphalt runs in another direction and you have to take it. Then, most unexpectedly, the asphalt hardens, the terrain calms down and you say to yourself: “Ah, I got it” and whoop – the asphalt liquefies again, the road changes its direction and, above all, the speed of hardening this path is different… Children grow, change and we adapt with them to meet their changing needs. When children are typically developing, one draws more or less from one’s childhood memories and from the experiences of friends and relatives.
However, having a child with autism is a huge challenge and constant, daily learning.
When there is another typically developing child in the family, the situation becomes even more complicated. The parent begins to juggle many roles and often has to be both an emotional counselor and arbiter in complex relationships… In many ways, having a sibling with autism is like having a sibling with typical development, but with an individual character. In other respects, it is far from the case. Having an autistic sibling in the family both enriches other children, but also presents them with atypical daily challenges. Typically developing children in the family usually have a number of changing feelings about their role in relation to the child with autism.
There are questions that children ask, as well as questions that they seek answers for themselves. Often in practice, parents say to me: “We haven’t talked to the other child about this”, “We are waiting for him to grow up to explain more clearly”, “We don’t want to worry him/her”, “How can I explain something to my child which I myself do not understand and accept”…
Children are often more observant than us adults. When something strikes them, they usually ask.
The difficult children’s questions that parents have shared with me (with changed names, of course): “Mom, why doesn’t Ivo speak”, “…but why is he like that, he’s different…”, “What’s wrong with Eli?”, “Brother will my baby stay?”, “Didn’t you say my sister is autistic? Is that a bad thing?” It is good when children ask – it means that they trust us and are not only looking for information – they are looking for emotional support. Answers saved because of inconvenience, because of an inability to give the necessary information, or because of a desire to save pain, do not close the issue. On the contrary! When the child does not get an answer here and now, he understands that the topic is particularly important and it begins to gnaw at him like a worm. Any stilted response reinforces the child’s anxiety and can lead to a loss of confidence.
Children are spoken to honestly. Of course, the information is served to them delicately, in the smallest possible portions and according to age, but honestly! When you explain autism to children, it will help them understand their sibling and can improve their relationship. Children’s thinking is radically different from ours. There are young children who think you can get autism from sneezing or contaminated food, and there are those who think their bad thoughts about their sibling caused his autism.
When you close the channels of conversation on the subject, you let the unlimited space of a child’s imagination fill the answers.
As children age and understand, they will ask more complex questions about autism, so your answers should be more informative and detailed. Also, try not to make promises or be firm in your predictions. You know that autism is a wide range of manifestations and undergoes development (especially if the child is at an earlier age). You also know it’s a lifelong condition. There are also many other details that you yourself do not know. Be honest when submitting this information. E.g. “I can’t promise that your brother/sister will talk/start playing with you. But I promise you that we are doing everything in our power to make this happen.” Usually when children ask – we respond by giving information.
A good approach when starting such a difficult conversation is to try to find out what your children already know. This way you will judge whether it is good to introduce new information, clear up ambiguities or confirm what they have already learned from another source and/or from their observations.
Try to use words and ideas that your children can understand.
Sometimes children need to hear the same information several times (especially younger ones). Don’t let that bother you – it’s their way of making sense of what they hear and integrating it into their experience. Talk as often as the child needs.
It is also important to use specific examples to help the other child see the strengths of their autistic sibling, as well as clarify the challenges the autistic child faces in everyday life. E.g. “Remember how scared you were when the neighbors were doing renovations and knocking over your bed. Your brother/sister experiences something similar when you turn on your hair dryer or when we are in noisy places”.
Once in a therapeutic setting, a mother cried in front of her other child and he asked her, “Mommy, why are you crying?” She answered him: “I’m not crying – something got into my eye”, then with a look and a gesture she showed me to divert the topic. We all strive to show our children only the strong, coping side. We believe this is how we protect them. We don’t realize how much damage this has done to humanity! We humans are feeling beings, we have our emotional ups and emotional downs! When we show children only the highs, we teach them that the lows are shameful and unacceptable. The signal we send to children is: “You have no right to be angry! It’s a shame to be weak, sad or desperate!”
By sparing them our pain, however, we are not giving them the means to deal with theirs! By sharing your own feelings, you help typically developing children understand that their feelings are normal. For example, you can say that sometimes you feel sad, offended, or disappointed. Teaching them to recognize these feelings and showing them your coping options will help them find their own way to deal with their emotions. Of course, we are not talking about turning your child into a listener and an emotional vent – under no circumstances should he enter into this role!!!
As children learn and adjust to their sibling’s autism, it is possible and completely normal to experience some negative feelings. For example: jealousy (children with autism require more time and special attention), despair (“Will he/she ever start playing with me”), anger (towards other autistic intolerant children), shame (at other’s behavior child in public places), guilt (“Do I love him/her enough? Am I a good brother/sister?”), etc. Usually, in most families, children accept their autistic sibling well. But everyday life sometimes puts them to the test… Emotional outbursts shared by parents: “I hate him, he just breaks my toys”, “Can he not come with us to the playground?”, “I don’t want him to be my brother”.
Emotions, whether expressed vocally or not, need to be acknowledged and supported.
Such situations are an occasion to teach the other child to understand his emotions and to deal with them. E.g. “He breaks your toys. This is disappointing. If I were you, I would be very angry too. You hate those moments.” Or “Sometimes you are ashamed of your brother/sister’s behavior”. You are annoyed when he/she interferes with your games on the playground. It’s normal to feel this way. Let’s think together about how you might deal with this feeling.” Or “Your brother’s behavior sometimes seems to get to you. It is difficult for you to cope in these situations. I understand.”
Sometimes, especially in the more severe forms of autism, it is possible for the other child to feel overwhelmed or damaged by life in the family.
In such a case, it is good to support and stimulate him to find friendships outside the family circle. It is a way for him to find self-expression in a role other than that of a sibling to an autistic child. Counseling with a psychologist and/or joining groups for sharing and mutual support with other children in a similar role is common practice in a number of countries around the world. Social networks also provide opportunities to meet and exchange experiences with peers in a similar situation.
Every child is different. This article covers some general principles and is not intended to provide one-size-fits-all solutions – there are none. In all circumstances and situations, one thing is certain – the manifestation of emotional support, understanding and interest in the child’s questions, thoughts and feelings always brings peace and strengthens his relationship with the parent.
As a psychologist at Karin Dom, Verzhi conducts group and individual therapy with children with various difficulties, applying a family-oriented approach, works with children on the autistic spectrum and their families, consults parents of children with autism. Actively participates in projects aimed at inclusive education and the inclusion of children with special needs in general education nurseries and kindergartens.
Vergie is a certified ABA and PECS therapist. In 2017 acquires a European certificate in psychotherapy. She feels good in the role of a trainer because she likes to analyze and pass on her experience, meetings with specialists from the country and abroad inspire her for new professional challenges. Verzhi conducts trainings for parents and specialists on topics related to the challenges faced by families with children with special needs, the education and upbringing of the young child, adaptation in a children’s environment, unacceptable behavior, etc.
Dear parents, on April 28th at 18:00 we will hold an online webinar on the topic “How to talk with the other child in the family about the difficulties of the child with autism?” The event will be Facebook Live within 40 minutes. on Karin’s home page. You can get involved with questions on the topic to our lecturers Virginia Vasileva (psychologist) and Nikoleta Yoncheva (speech therapist) by sending them by April 24th in the form HERE!
We look forward to your questions! Join the discussion on the topic!
Строим новия терапевтичен и образователен комплекс във Варна