When kids are not born “perfect”

Who is perfect?
Who is perfect?

Since I am occupied with mental health, within the last years I have often participated in conversations having as subject kids who were born with some physical or mental abnormality and how their parents behave to them. Frequent questions that can easily come up during these conversations are: “Isn’t a life with a kid who has a permanent problem more difficult?”, “How can you raise a sick child? Is everybody able to do that?” or “If you know that you are pregnant to a child that is not completely healthy, are you going to give birth to it or not?”. It is wonderful to have this kind of conversations. It is really pleasant to talk about this subject and I feel really happy when I see people wondering about these things and they have not decided yet. A person who wonders is less hard, more open to new ideas, opinions and experiences that can change your life. I always feel sorry for people who don’t have any questions, they don’t desire to learn something new and they don’t worry about various social subjects. Probably they believe that the subject we discuss now it is not of their interests. But seriously, this kind of people can really frighten me!

The subject of having and raising a non “perfect” child it is not simple at all. If somebody says the opposite, he/she obviously lies or he/she doesn’t understand how serious and responsible you should be to bring up such a child. This doesn’t mean that we will discourage all the optimistic people to think in a positive way. But we can ask them to view this subject with more skepticism.

The truth is that I have never met somebody who told me that it would be no problem to raise a child with special needs. Every sensible person tries to give a balanced answer in a subject like that. They don’t want to say something that could be rude, they try to avoid looking like cowards or cruel to the others. On the other hand they want to be honest and they don’t afraid to express with a phrase or a move the trouble they feel to answer clearly about such a serious subject. So, they try to say “No, I don’t want this for me” in a kind and soft way. There are some other and stronger people, which they will say “I don’t know if I want something like that”. There are various answers regarding this subject and there are many factors (i.e. personality, age, gender, previous experiences) which can influence these answers.

Except of different and various opinions of people, we should search for the real truth, which is always hard – harder than many people can accept. Yes, raising a kid with special needs, a kid that is not “perfect” is something really difficult, tedious, painful and expensive. But is it possible for somebody to experience the whole procedure as something really beautiful, creative, special, and constructive? Maybe a parent who takes care of a “special” kid feels his/her life as more meaningful and full of love or maybe some parents need these special kids to be sure that they really love.

I was wondering about all these things, as I was watching this video. The main character of this short movie is Joshua, a 12-year old boy with Asperger’s syndrome. One day Joshua decides to interview his mother. Trust me; it was one of the best interviews I have watched in my entire life, probably because Joshua’s mother is an unbelievable pedagogue and an amazing interviewee.

Yes, bringing up a kid who will never be “perfect” is something really difficult. Moreover, if you are early informed (first months of pregnancy) that your kid is not totally well, then you have to make a big decision: whether you will let your child to born or not. I don’t know which is the right or the wrong decision here, as there are not right or wrong decisions in life. Probably, some people would say that it is better to prevent this child to be born, because he/she is going to live a “half” life with two parents always tired and sad, who will always wonder how their child will survive when they will pass away. However, there are some other people who will answer that we don’t have the right to refuse to a child to live, to take his/her own direction, to be unique – as everybody else – and why not, to be a good example for every person that tries to improve his/her life. And parents who decide to stop their child’s coming; maybe they will lose the opportunity to be more intelligent, wise, complete and full parents.

3 years ago, I had a conversation with a friend who is psychiatrist. We were talking about the heredity in schizophrenia. Until now, many studies have shown that the heredity in schizophrenia is high (from parent to child), so many health scientists are wondering if it is better to advise people with such serious mental problems to avoid having children. “Maybe scientists of mental health should advise their patients to avoid having a new family” I said to my friend as I was thinking that this is the best option if we want to protect patients from having more responsibilities (a whole new family) which could make them feel more stressed. Additionally, a control of proportion of the disease could be succeeded. My friend smiled and he told me: “Yes, you can advise a person with schizophrenia to avoid having children but in this way you are somewhat prevent the universe to create another Hemingway, a better Nash or a greater Van Gogh”. I was thinking his answer for many days.

Instead of an epilogue

I don’t know what it would be my decision if I was suddenly informed that my future baby is not completely healthy. And I say that I don’t know because I am really not sure: Maybe I would keep going with my pregnancy or maybe I would stop it. Until now I have figured out that there is not point to expect from myself or the others clear answers regarding notional, non existing subjects. Until something is real and a fact that should deal with it, we should not torture ourselves for any reason. Yes, we can wonder and think about it and that is what makes us humans. But there is no point to answer or to make decisions in advance, while we can – and we have the right – to change our minds. I don’t know if there is a most honest answer than “I don’t know” especially when you cannot know. So it is better to make a cool, rational decision when it is really the time to decide about something.

P.S. A book that I will never stop to suggest – really related with our subject – is the “Memory keeper’s daughter” by Kim Edwards. I didn’t make a decision by reading it, but I wondered many times if I am still the human being I think I am and my mind got really bright and full of many beautiful thoughts.

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2 thoughts on “When kids are not born “perfect”

  1. Interesting…I was always afraid of having a special needs child–specifically, the only “type” I knew about was mental retardation. JUST BEFORE my Scottie was diagnosed with autism, I met and became very close to a father of an 18-year-old down syndrome son. He was telling me a story and suddenly I realized that his son was an eternal child and suddenly I was no longer afraid. I looked back at that moment after Scottie was diagnosed and realized–again–that an angel had whispered in my ear yet again to show me it’s “okay” (the first time was at the 9 1/2 month mark of my pregnancy for which I was SO SURE I was having a girl and I had a really awesome dream about a little boy–my son…and I KNEW I was going to have a boy at that moment and knew it was okay). Would I have discontinued the pregnancy if I knew Scottie was autistic before I had him? Heck NO! I had a miscarriage before I had him and almost committed suicide…I was so afraid I’d never be able to carry a baby…never have a son or daughter…that was the most intolerable thought which was almost my demise. I’m probably the only mom in the world of a son with autism that is actually happy he’s autistic. The first WRONG diagnosis was adrenoleukodystrophy — genetic and terminal…I’m happy with autism–he can live with that and indeed he has lived! 🙂 My greatest challenge has become my biggest blessing!

    • Thank you so much for your wonderful comment and because you decided to share with us your special story. I am so happy when I hear or read about people who found true hapiness in hopeless or unbelievable places/situations. This is actually what true hapiness is: finding your own purpose, your own life meaning. Give a big kiss and a hug to Scottie from me. I wish you all the best! 🙂

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