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Seven Rules for Surviving Stigma

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Sumreen Rais, mother of two autistic sons, shares with other parents the seven rules that help her overcome endless challenges.

1. Allow yourself to feel grief.

That time (when I first found out my son was autistic) was a really bad one for me. The way I came home and got tense, took so much stress—and obviously, when we are able to educate a child in a good school, we can afford everything for them, and then something like this happens, admittedly mentally it hurt really bad. And I stayed like that for many days.

2. Educate yourself.

I hadn’t even heard of the word autism, but through the Internet I got a lot of knowledge about it. There is a California autism centre and I worked there; I went and looked at the children there. I put Zeeshan (my son) in a 0-6 group there and I went and looked at how they trained him. I’d have to go to the teachers and get training, and ask, ‘What are you teaching them? And why are you teaching them? I didn’t know what eye-hand coordination was, what muscular movements were—all these things I had to ask and learn. Then my interest was born, so if there was a course I’d take it, if there was a workshop, I’d go.

3. Fight negatives with positives.

In some places where I can’t take the children—social gatherings, or someone’s funeral—people who don’t know anything about autism, or special needs, try to guide me. “What you’re doing with your children is very bad. You don’t bring them to places like this. This is a bad thing. For your own pleasure you left your children and came.”

First I used to get hurt. Now I laugh it off. I tell them, “Never mind, we’ll take the children to another public place. They are enjoying in a place even better than this.” So by giving them a positive answer, it’s a way of ignoring it. Just because we’re getting hurt, hurting someone else won’t help.

4. Never blame yourself.

I never felt like because of me this happened. Because any mother, no matter how selfish, although a mother can never be selfish; or even a mother who only does what she wants or thinks, even she won’t be able to do bad for her children. Every parent wants to give their children the best. I don’t think any parents should blame themselves.

5. Seek help. Isolation won’t solve your problems.

It’s really very necessary for parents to get counselling. Especially mothers, because fathers are at work and mothers are usually at home. Both socially and emotionally people blame mothers, and mainly also because if children need to be given the right guidance, the mother is usually the one who has to give it. In reality, mothers are hurting a lot from the inside.

There is Islamic counselling—it’s not just for crazy people. It can help a lot. You can get a lot of issues off your chest. The relaxation you gain from that is great. Counselling is very, very necessary.

6. Take a break.

Taking breaks is necessary. Taking time out for yourself is very necessary. If you don’t make time for yourself, how will you be refreshed? If you are fresh then your children will be set. Sometimes I give Rais (my husband) the children and I go out with my friends. Sometimes I send Rais to go out with his friends. This is very necessary. Every healthy mind needs a change and relaxation.

7. Stay positive.

Parents must be positive. Many parents say, ‘Oh look this happened to us. We are so unfortunate.’ I tell everyone, ‘You are special, that’s why God gave you this hard target. You are a chosen parent for this work. Do what you can do, leave the rest to God.’ You should think only positive. If we keep thinking ‘What will happen after us?’ and we sit with this grief, then we won’t be able to do anything right for them now, forget about after that.

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One Response to Seven Rules for Surviving Stigma

  1. padma July 13, 2010 at 11:57 pm #

    Hi Sumreen,
    I like your seven rules for surviving the stigma. I know it takes a lot to Keep upbeat sometimes. How old are your children.
    padma

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