It’s been a year since we last spoke, but Sumreen is back—bolder and braver. She takes us into the psyche of a woman who killed her children, speaks out about the pressures from in-laws and strangers alike, and asks us to support, not sympathize.
(Sumreen Rais and Rais Azam are the parents of two autistic children, Zeeshan, 10 and Shahzaib, 14, who shared their incredible story with us last year. Read here if you missed out!)
______________________________________________________________________
What awareness doesn’t know
Awareness we need not just for, ‘OK this is autism.’ But what living with autism and raising autistic children means, what happens to the family when this happens. Change is happening, but as the percentage increases of autistic children, according to that the awareness is not increasing. People come (to autism awareness walks), hold the candle, wear the t-shirt, but they’re not taking it seriously…are still not realizing actually what the problems are.
Living on the brink of disaster
There’s a Pakistani mother who killed her two autistic children (http://bit.ly/i9nkC9). People say the mother’s like this, the mother’s like that; I say, ‘No, the mother is not like that’. Mothers can’t even touch their children; even God says a mother loves like God loves. And so if a mother has hit her children, how much stress must she be in? We need to realize this. What circumstances must have befallen her that she did that; I know that feeling very well.
What happens is when a child is diagnosed—and because I’ve been through these feelings I can feel what that mother must be going through at that time—because when Shahzaib was diagnosed, a mountain fell on me. How that time was for me I can’t even tell you. For a long time I wasn’t normal; I went into depression, and I was frustrated. At that time your children’s future comes in front of you.
So it’s also our fault. We are not counseling mothers like this.
Screaming for help
I’d like to tell everybody that if your child is diagnosed with autism, then before treatment of the child, start treatment of the mother. First treat the mother, the families…because you have to prepare them. Right away put them in a support group or start their counseling. Because you know what happens? The child doesn’t know that he has autism or what autism is. The child just is how he is. But the mother falls apart. It’s at that time she needs support. Right at the beginning, because that’s when she’s hurting a lot. Because then we need to tell her that as you move forward, your problems will keep changing, meaning the problem is not going to go away.
The fine print
If I’m out alone and have to take them to the toilet—they are both grown boys but I have to take them with me to the ladies toilet—and I have to explain to Arabic women that there’s something wrong with them, they don’t realize it; they get angry…problem is on the face they don’t look like handicapped children. I have to keep explaining, and sometimes it doesn’t matter what language you tell them in, if they don’t want to understand, they don’t understand.
Sometimes when I take them to the hospital, I get parking so far away, I have to carry Zeeshan because he’s having an asthma attack, and I’m dragging Shazaib because he’s now bigger than me—so for all this I’m alone. I have applied two times for a special needs parking permit, but they won’t give me one without approval from the health authority, who refuse because my children need to be physically disabled; they don’t understand that hyperactive autistic children don’t have any road sense.
Even for school dealings, I have to be the one who’s there. Then I come home and I have to do work at home. These children can’t help you with things; fold clothes or anything. This is not their fault, right? You get so tired sometimes that inside you get anger. And when this anger comes inside you shout at them; and what happens then is that whatever training you’ve done to teach them, they will get scared and forget. So I have to tie down and keep in my own anger; I have to suppress it.
When all these things get combined, mothers get isolated. I’m home all day and I’m not talking to anybody, am not communicating. At least Rais goes out, talks to people, even if it’s with colleagues, some laughter—but what happens to mothers is we sit at home and we only take care of our children, and the same thoughts go around and around in your mind.
When I think of myself, I know I am a very positive woman. But I’m saying when I’m a woman who is so positive and with so much energy, and even I can get so depressed, then what must be happening to other women…
Support, not sympathy
Instead of giving sympathy, we need to give support. For example if I go to the mall, Shahzaib suddenly wants something and he makes a sound, and what happens is people start looking and staring. When public starts looking, the children know everybody is looking and Mama is feeling embarrassed, they’ll make more noise.
From public I want this support: if you see a child doing this, we are not giving them bad manners. They are special. Just understand that when you look, instead of helping me you are creating more of a problem. On top of that you are making me feel embarrassed, “What kind of mother is this? She hasn’t taught her child manners.”
To the family I say, sometimes why don’t you try and say, “Sumreen, don’t worry, this child is also ours. Just like other children are being raised, he will also grow up well. Don’t worry about his future.” If only someone would say words like that, too. Even if someone says, “Oh there’s a great school here for autism, we’ve nominated your child to be in it. If you come to Pakistan, it’ll be OK.” No, there’s no one to say this to me.
If you want to support then you can also say, “OK Sumreen, today keep both children with me. Go husband and wife today go out.” But no, nobody will give me this support. Nobody will take this responsibility for my children.
So then what right do you have to give me sympathy? And even when you give me sympathy it’s the kind in which you tease me. For this, you have no right. If you’re not going to support me, then don’t say anything.
Family matters
From in-laws and that part of the family, I get a lot of problems. First they criticize a lot; then if they sympathize they’ll do it by saying, “Oh, Allah gave you children like this? It’s better not to have had any children than this…”
My mother-in-law, when trying to show her concern, uses this one word, which means ‘I feel tortured. I feel torture that Allah gave you these children. If he was normal he would have been in school now.’
And I want to say, ‘Why are you tortured? I’m not. I love my children.’ Another family member said to me, “Now what’s you’re life? You have two autistic children and children like this (autistic) don’t even die…”
You see their wording? She’s telling me that other children who have cancer and other illnesses, at least they die. And I’m shocked, ‘What are you saying?! What kind of wording are you using to talk about my children? You’re torturing me.’
Also because in South Asian families, there’s this thing about in-laws: they can understand their own daughters easily, but not their daughter-in-laws. I want to say all this frankly because I want you to realize what is happening to me.
One day Rais’ elder brother said to me, “What do you give to my brother but two pagal bachay (mental boys). How painful these words are to me I can’t explain.
And when I complain of him to my mother-in-law, she agrees. “Yes, they are mental, that’s why my son called them mental.”
Just look at that. If my boys’ first blood relatives are calling them mental, then what should I expect from others?
Fathers, step up
Fathers, just like a mother’s responsibility has doubled, so has yours. If you have time to watch the match, or time to watch the news, you also need to take the time out for your children.
Second thing is if you know your family is saying things about your wife, talking about her, hurting her—then that’s where you need to support her.
You also need to give your wife time, a time in which you only understand her feelings, understand her love, what she needs. You can’t just say ‘Realize the children are like this and get on with it.’ Because just like she has a brain to understand that, she also has a heart. Even if she hears a small word from her husband—of support, of love, of courage—then she feels right away, ‘No, no, my husband’s with me’ and her energy will increase.
