It’s Not Okay To Stare! Braving the World of Special-Needs Parenting

February 22, 2016

As parents, we hope that people look at our children with kindness, understanding and admiration. Being stared at by strangers (and sometimes even by people you know) and judged for what they perceive as bad parenting is not something you can get used to easily.

My friend just texted on our WhatsApp chat group. Today, she took her daughter out to a shopping mall. Her daughter was diagnosed with severe autism. She just turned 13, and she can now speak in short sentences and make her wants known. I have seen the progress she has made over the years, and it is an incredible journey — a far cry from the days when she was non-verbal, extremely hyper, aggressive and uncontrollable. Now, she is a happy, smiling teenager who loves pop music.

My friend is an incredible powerhouse of a woman. When she sets her mind on something, she is unstoppable. One of the smartest, bravest and most resilient people I know. Who else do you know who never skipped a single AC chelation dose and maintained a strict GFCF diet with a full range of biomedical protocols, whilst staying on a wooden boathouse with no electricity in freezing winter on a family vacation at the India-Kashmir border en route to the Himalayas? Like I said, she’s unstoppable.

She brings her daughter everywhere; she doesn’t hide her away from society. She wants her child to be exposed to as many experiences as possible. Society will never learn to be accepting of children with autism unless they get to know them.

Today, she took her daughter out by herself, alone, just the two of them. Her daughter loves to stroll and window shop. She doesn’t ask for anything to buy; just looking at the sights and festive decorations makes her happy.

Today, her daughter was not at her calmest. There were verbal stims and behaviours, puberty hormones struggling to find equilibrium. And there were stares — lots of stares from other shoppers on this busy weekend. Feeling overwhelmed, my friend had to rush out of the shop, pulling her daughter along.

This was a harder day than most. My friend says she couldn’t cope with it. Not today.

She wrote “Even after 10 years, I’m still not used to it. I’m tired. So tired from running away. How am I supposed to get used to it? Just look at my daughter.”

She then posted a photo of her 13-year-old daughter sitting in a brightly coloured coin-operated helicopter. She’d squeezed herself in, head and shoulders bent over in the small seat designed for children one-third her age. I wish you could see her smile, a smile of complete happiness and at peace in her world. It’s a scene that makes me melt with joy from that beautiful happy face, and a huge undertow of ache pulling at my heart.

“I don’t know whether to laugh or to cry,” she wrote.

Another friend replied “She looks so cute in the helicopter. Don’t cry. Look at her smiling away.”

I replied “Don’t blame yourself if you can’t cope. It IS damn hard. The fact that you brought your autistic child out alone is an immense testament to how good a mother you are, okay? You take her out because you love her and you want to spend more time with her doing what SHE loves. And that makes you a wonderful mother my friend.”

By the end of the conversation, everyone in the chat group was crying a little bit. We all understood. We’re all autism mums. We’ve all been there.

As a mother to two children who were diagnosed with autism, I got used to the stares. Somewhat. You know the stares I’m talking about. Strangers looking at you when your child has a meltdown in public, or is stimming, lost in their isms. Generally, children with autism look like typical children, until they behave in a manner unusual to most. Everyone reacts differently when confronted with a child displaying unusual behaviours that are typical of autism. Some people feel fear, disgust, or shock; some find it humorous and even laugh. Some people get extremely judgemental, often a result of ignorance or prejudice. Some people feel pity or compassion. Sometimes people feel compelled to give unsolicited advice that sometimes borders on insulting. “That kid needs a good spanking!” and “Learn how to raise your kid properly!” are commonly heard.

My elder daughter, Mei, was a runner. She was very fast, silent, and completely unaware of danger. Thank goodness I had quick reflexes and I could bolt after her. Unfortunately, I’m not a natural runner: sciatica; a full bosom — busty girls know what I’m talking about here; general uncoordination; also, I usually wore pretty-but-impractical shoes for running. Imagine Kermit the Frog running in drag. I finally resigned myself to unattractive-but-sensible shoes during the remainder of those autism years.

Nine out of ten times I’d catch her immediately. The other times? I’m grateful that miracles do occur. Mei was fascinated by water, as many children with autism often are. She could spot a puddle from far away and ZOOM! Away she’d go. Those days, I was fairly oblivious to the stares of strangers, who would stop and stare at this frazzled mum screaming her kid’s name at the top of her lungs and running helter skelter across a busy mall. Usually, I only had eyes on my kids. I dared not take my eyes off them.

The few times I did raise my head and actually take the time to look around me, yeah the stares were there. Usually it was the judgemental look, which was easier to deal with as I really don’t care about what judgy morons think about me. Though it was a lot harder when people looked at my children and judge THEM — as if they were naughty, undisciplined brats who needed a good spanking. But generally, I didn’t let it bother me too much because I knew that my children were wonderful — wonderfully different. The world couldn’t cope with seeing and hearing a child with autism screaming in unholy terror and thrashing about trying to get out of my arms because being in a supermarket was sensory overload for her. Melting down was the only way she could process it.

What would you do if your child was terrified, scared, and unable to express herself? How would you cope with a child who can’t comprehend what you’re saying, who doesn’t understand that you’re trying to help her? And all this happening in a public place with a dozen people eyeballing you.

Sometimes I’d get a few smiles, maybe a nod of compassion and solidarity from another fellow parent, often older people who, I assumed, were grandparents themselves, the “hang in there” look. Often times I’d smile back, probably not my best, most sincere smile, usually a wan, lacklustre, “oh well” look, but still, full of gratitude.

Judgemental stares and smiles of solidarity, fine. I knew how to deal with that. I had my coping mechanism down pat.

Unless it was the dreaded pity look.

They’re the worst. Having complete strangers looking at me with pity . . .  How did I end up being a pitiful sight? I’m not a “feeling sorry for myself” kind of person. When people looked at me with pity, for a split second it made me feel sad for my life. And that made me angry with myself because my life was NOT sad. It was and is a life filled with love, joy, and wonderful children. Yes, there are crappy moments that come with autism, but in no way does that define my life as sad.

I do not wallow in self-pity. I seriously did not know how to process pity from others. That was hard to take. What was worse, they looked at my children with pity too.

So I usually kept my head down and tried not to make eye contact with strangers.

On one memorable plane ride, I got the whole spectrum of stares from all 120 passengers and crew members of the flight. Mei was seven months old. She had a lot of sensory issues from birth and was a difficult and fussy baby. Imagine being trapped on a 3.5-hour flight, with a baby who screamed inconsolably for the entire duration of the journey. I was travelling with my husband, my parents, and our helper. Five adults could not calm her down. If you heard her screaming, you’d think she was being tortured. The entire plane was deathly quiet, everyone watching us struggle, sensing our utter helplessness. A few days later, a few passengers from the plane recognised us as we were out and about. “Oh you’re the ones with the noisy baby!” said the nice older gentleman, who had sat a few rows behind us. He and his family were there on vacation. He said that she was probably feeling hot on the plane and we should have sprinkled some water on her head. Oh well, at least he was kind about it.

Going out was always a struggle back in those days, I dared not go out with the children without my husband or another person along to help me. I could not control even one child alone when we were outside. At home, it was okay; I was mother of the year. But when we went out? I needed the whole entourage of spouse, nannies, grandparents, uncles, aunts, cousins, anyone I could rope in to help basically.

My elder daughter was a licker, she’d lick anything she could find. One day, to her joy, she found a puddle in the supermarket. By the time I reached her, she was lying down and licking the puddle off a filthy supermarket floor. I didn’t dare look up at the nearby shoppers, stopped in their tracks by this surreal scene. I could just feel the waves of disgust and judgment emanating from the growing audience. I quietly picked up my struggling, screaming daughter and left the supermarket, shopping trolley abandoned and forgotten. From then on, I took her out less and less.

My younger daughter, Min Min, was still a baby at that time, and unlike her sister, she was quite happy to sit in the pram. But when she turned two and regressed into autism, taking her out became hugely challenging. Going out with both Mei and Min Min usually culminated in an ugly, ugly mess, often ending with me driving home crying through the traffic. Oh, the looks, the stares, boring into me as I walked past with two hysterical children. It took everything I had to hold my head high and not let the tears spill down.

Most days, I learned to have a thick skin. But on some days, a stare from a judgmental stranger could bring me to my knees. Other days, I felt like at staring back at that rude stranger looking haughtily at me and my child with disapproval on her face, and I fantasised about screaming in her face, “It’s not okay to stare! My children have autism!” But I did’t.

Special-needs parents are used to these reactions. We are used to the stares, the looks, the ignorant remarks, the open mouths that some people do not realise they have when they see our kids in the middle of a behaviour in full-blown mode. Generally, we parents can cope with it. A rude stare from a stranger is hardly the worst thing that happens in our day. Acceptance has some ways to go; we get it. It takes time for people to get over their prejudices and ignorance. But some days are harder than most. The wrong kind of look could trigger a whole set of emotions I was so not ready to deal with yet.

The next time you see a parent struggling with their child, whether it’s a toddler or an adult child, before you judge them too harshly, consider that it could be a special-needs child. Instead of staring, here are some things that you CAN do:

• Give them space. Having people crowd around can make things worse for the child.
• Don’t drag your kids away as if the child is contagious. It hurts our feelings.
• Offer help if you feel so inclined, but do it in an unobtrusive manner. Maybe you can offer to carry their shopping bags.
• If the parent declines your help, respect their wishes. It’s nothing personal. The parents know their child best; you don’t.
• Know that we are trying our damnable best to get the situation under control.
• Look kindly upon them. Maybe say an encouraging word. For it could be the first friendly face they’ve seen that day.
• Send hope and strength to the parents, they will need it.
• Send love, peace and calmness to the child. He will respond to it.

I’ve had my fair share of stares. You know the saying “what doesn’t kill you makes you stronger”? I’m not sure whether it made me a stronger person, but it did teach me how to hone my coping mechanism. For one, I’ve perfected my resting bitch face. It came in handy. And apparently I have a scary stare, or so I’ve been told. No one dared utter a word against my children in my presence, so that was cool.

It takes a special kind of bravery to be a special-needs parent. The challenges thrown at us — well, sometimes it makes us weep from the sheer exhaustion and frustration. But equally, our children bring us such tremendous joy that makes it all worthwhile. Our children are beautiful, inside and out. We just hope the world sees them through our eyes.

Now, both my daughters are fully recovered from autism. They still face some health challenges, but they no longer have autism. They are the most awesome, amazing children, and I am so blessed to be their mother.

I still get stares, but they are now stares of delight and admiration for my children.

~ Dragon Slayer

About the writer: She is a mother of two children who are recovered from autism. She is the President of The Thinking Moms’ Revolution and co-author of Autism Beyond the Spectrum. She is the co-founder of Brightstars – Life Skills for Exceptional Kids, a holistic school for children with autism, ADHD, and learning challenges in Kuala Lumpur. She lives in Malaysia with her husband and children. And she wears pretty shoes every day now.

For more by Dragon Slayer, click here.