On parenting a child with disability

I guess I don't know much about parenting. I haven't tried it. What I have tried though, is growing up with a disability. And I have worked with children, with and without disabilities; I have met their parents. So dear parents, this is for you. This is not medical advice or science, nor is it based on politics or heavy theory. This is just me telling you to really see your child and stay positive. And please be proud.

The power you possess as a parent – no matter where in the world

This article is a result of discussion and sharing of ideas between two completely different countries and cultures. Ines Musabyemariya from Rwanda asked my friend Christian Karlsen for advice, and Christian wanted me to help reply. But actually it turned out Ines was the one giving me advice. She reminded me of how important it is to look to the parents. How can you expect a child to have a good life if the parents can't provide for it?

Obviously Rwanda is far from Norway, both measured in distance and in differences. You can read more about my reflections on cultural differences and similarities in the article «Norway vs. Rwanda». But for now, let us put obvious differences aside; let's not talk economics or politics. Let us talk about what power you possess as a parent, how you can choose how your child sees herself, how you can decide whether your child's disability is really a disability – or rather an ability.

What do you see; disability, or ability?

Understanding disability

Parents in Rwanda struggle because they don't fully understand their child’s condition. Ines worries this will affect the child psychologically. No doubt: it will. But does that just go for Rwanda? Absolutely not. Even in Norway, where we have all the resources and the best medical advice, parents don't necessarily comprehend everything. It makes me incredibly sad to admit, but even in Norway parents experience shame. Some might choose denial; some will hide and some will be overly cautious, scared and worried all the time. All of this will affect the child.

As a parent you do in fact have a lot of influence on your child's mind. Your child looks to you to understand and learn. It is through their parents' behavior, reaction and knowledge children learn the most of the world and themselves.

How your child sees him-/herself

The way you look upon your child becomes the way your child will look upon herself. Therefore it is of course important to educate and inform the parents of their child's disability. Not only to transfer the knowledge, understanding and acceptance to the children, but also so the parents treat their children in a nurturing way that is in line with the situation.

I prefer not to differentiate between the mind and the body. Human beings are complex and wonderful in the sense that we can process and monitor our own impressions, thoughts and feelings. What we think and believe will manifest in our behavior and our capabilities. Children who are constantly being reminded of differences and limitations may risk believing they are more disabled than what they really are. If a child believes he or she cannot climb the stairs (even though she actually can), she may end up not trying at all. Don't let your child believe and behave as if her disability is more prominent than it is. A negative approach will not only affect the child's capabilities, but also her life satisfaction, giving her tougher struggles or making her feel more helpless.

Mirror mirror: I see someone strong and happy

The way you act toward and nurture your child is decided by your understanding and degree of acceptance. If parents see their children as more fragile than others, they may care for them very gently and carefully. In some cultures parents view children with disabilities as a curse, or something that may cause the family harm. As a result they may act towards the children in a more hostile manner, with resentment.

How you see your child will result in different behaviors. This will in turn affect how your child understands his or her self worth. If you treat your child with support and care, she is likely to grow up to be strong, resilient and psychologically healthy. In general children look up to their parents in many ways; they listen and learn, and quite often end up living by the same thoughts and values as their parents. Never underestimate a child's ability to adapt to both negative and positive attitudes and behavior.

Finding acceptance

Every person has to find acceptance and peace with their own situation. This especially goes for a child with a disability. To always strive for a way to remove ones disability won't bring joy or happiness. If as a parent you don't fully accept your child's condition, you might not recognize his or her needs and behavior. This may lead to a lack of adjustment or accommodation for the child either at home, school or other arenas. Your child might actually benefit from aids and facilitation. If your child is pushed towards meeting the «normal» expectations and standards, this could harm the muscles or body even more since the child may receive further strain rather than relaxation. Not considering the disability can lead to exhaustion, malnutrition and other health problems. And it will most certainly affect the child's mental health and wellbeing. The better choice is to explore what abilities the child does in fact have. Positivity, safety and joy are keywords. Rather than striving for something that might not be realistic.

It is easy to list all the negative effects from parents misunderstanding, or lack of knowledge. And it is likewise easy to say the parent's need to be educated. The hard part is to encourage towards having an open mind and spend time to learn and understand. My point of view is that this is hard no matter where in the world. We all wish for healthy children that will live rich lives and be happy. Anyone is entitled to feel a slight disappointment, or sadness, when they realize their child might go through life with more struggle, even in Norway. But yes, it is harder in countries like Rwanda, no doubt. And that is exactly why I wish for every Norwegian parent to feel thankful, rather than helpless.

Parvati grew up at an orphanage, and with a disability. When I met her she just kept on smiling.

Happiness regardless of borders and diagnoses

The thing about happiness, or life satisfaction, is that it has very little to do with money, property or place of residence. The common assumption is that with more wealth, security, and especially better health, one is happier. This isn't all the way true. Happiness doesn't rely solely on how much money you have, where you live, or what abilities and opportunities you are granted. All of this does affect your happiness, yes. But I believe, and have seen, that people can be happy regardless of their (dis)abilities, where they live and what they own.

Even though a child with disability might need extra care, aid and accommodation, I would like to emphasize that the child is not primarily the diagnosis; he or she is above all a child. If you keep your child sheltered, without the opportunity to explore much of the world, this will affect the child and disrupt their development of motor, social and cognitive skills. Most importantly, it will keep your child from being a child. Children can have different sets of capabilities but still experience the same amount of happiness. A healthy child is not synonymous to a happy child and vice versa.

She cannot walk or talk. But she can smile.

Push and acknowledge at the same time

I know it is hard, to find the balance between protection and challenge, – your child shouldn't be treated too differently from other children, yet he or she might have different and more extensive needs. The key is to let your child explore her own challenges and limitations, and take part in the journey. You might have to push, but make sure it is in the right direction, for the right reasons. Don't push towards fitting into the «normal» standards, and don't push towards changing who they truly are. The more your child is encouraged to learn about the world and herself, the better and stronger she will grow, to face the struggles she might meet. Let your child be the whole person that he or she is. Let her find what interests her, find her inner motivation. Your child might turn out to be different from what you imagined, regardless of weather she has a disability or not.

While your child learns, stumbles and falls, make sure you acknowledge the strength and courage it takes. Instead of focusing on his or her pain, sadness or difficulties, focus on how tough, brave and resilient she is for trying, managing and living with her struggles. By reminding your child of her strengths rather than weaknesses, it will in turn make her stronger and more resilient and increase her life satisfaction. And you know what? It doesn't cost a penny, it doesn't demand education or research. It is really so simple. Yet some how difficult.

Let her fall, but encourage her to stand up straight.

Do your best

Remember, you are not the one living with the disability, your child is. And I can imagine you would like your child to be as happy as possible. Well, you can make this happen. Your positivity and care may transfer to your child's feelings and behavior towards the disability, possibly making her train and care for it more, while also experiencing a better life.

The way I see it, no parent could ever understand exactly how his or her child's condition is, especially not psychologically. Only the child itself, and possibly others with the same diagnosis, know what it is like. As a parent you probably have to accept that you might never be able to understand fully. Your child has his or her very own lived experience. What is crucial is that parents try to relate, and try to help the child figure out a way to comprehend and accept the situation. As a parent you of course need to gather as much information as possible about the diagnosis. But then you have to get to know your child as a whole person, not just as a result of a diagnosis or an illness. A diagnosis is only a part of who your child is. A child with a disability is above all a child.

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