I was asked by someone close to me why I am continuing therapies when even after 2.5 years sonny boy is still not able to communicate. The question made me realize that there are many such things which are being asked and though most of the words are well-intentioned, beautiful sometimes are overwhelming.
My responses to some questions which are asked generally to parents with kids on the spectrum.
1. I am so sorry!
Please do not be sorry. I am proud of my son, am not worried about the condition. Yes, he needs help doing certain things. But he also is awesome at many things. I choose to look at positives.
Instead, say that you would like to know more about my baby and about autism.
2. It is karma!
No, I refuse to believe that a young child should face consequences of karma. Don’t bring karma up. Ever.
3. It was the wish of almighty.
I don’t think so. When you say this, you imply, without meaning to, that we as parents and our kid as a child deserved this.
Instead, just say – have faith.
4. Is he mentally disturbed/retarded? Or thank God he is not mentally retarded!
When you say this, you are breaking many hearts in one go. You are belittling MR and trivializing their issues.
Choose your words with kindness
5. He was given to you because only you could handle him God gives special kids to special people.
I know you mean well and really think highly of us. But know that we are doing what was handed to us. We are not heroes. We are just ordinary parents in not so ordinary situation. Anyone in our place would have done the same. It’s not heroism. It’s motherhood.
And while I say that, an amazing parent doesn’t need a special needs child to show that they are amazing and then there are parents who do suck at the job of parenting. It happens.
I have and mothers like me have lost their shit many times, we cry, we scream, we scold, we give up, we hide, we do what any mother or father does. Yes, this is hard. And at times we need to step back.
Instead of saying that we are amazing parents, and we will be able to manage things, step up and offer help. Acknowledge that we might be tired and out of our minds and need a break.
6. He doesn’t look autistic. But he is very good/normal looking. Hey, he just responded to me! He knows his alphabets! Hey, he can sing! Hey, my kid was also like this at this age. Hey, my uncle/father/sister started talking at the age of 5!
What do looks have to do with his conditions? Neither has age any role to play. It’s been tough for us, especially the initial years. And when we have to explain or defend our actions and what he is doing and how it is part of autism, it’s draining.
ASD is a spectrum disorder. The nomenclature itself shows that there is a range. And that range is dynamic. If a child has been diagnosed as being mild, after 2 years he can be moderate or out of the range. It differs.
Autism is not about his actions, his stims, his noncompliance, his behavior, his inability to communicate, or about his looks, height, gait etc.
Instead be kind and show an interest. Know about autism. And if you don’t want to know about autism then do not comment how he doesn’t look autistic.
7. Have you seen this person, he is a great baba.
Stop. Think. It’s insensitive.
A parent is already doing whatever it takes. If babas and pandits and maulvis could “cure” autism then there would have been no autistic child. It would have been a matter of just taking the child to the baba. Having faith and having blind faith are two different things.
Do not wash away all efforts a parent is taking in helping their child by saying all this could be done by a visit to a baba.
However, blessings from someone who believes and worships God is something different. Because blessings always help.
8. Is it evil eye? Did you try taking away the evil eye?
Think for a moment. In today’s world who had the time to put an evil eye on an innocent child. And what does evil eye has to do with autism. No, I don’t do “Nazar utarna.”. His grandparents did and his autism is still there.
9. Don’t take him near peepal tree, put a knife under his pillow, etc etc
Lets cut all the peepul trees and likes and eradicate autism!
10. Why does this happen? Did someone in the family have it?
Why shouldn’t you ask? Because no one knows. And since no one knows, a sense of uncertainty and guilt come in the mind of parents.
I have seen kids on the spectrum from joint families, nuclear families, with regression, born with it, no history of developmental delay in the family, with developmental delay in the family, in cities, in villages, kids of stay at home moms, kids of working moms, a mom who breastfeed, moms who don’t. No one knows why this happens. So asking this is irrelevant.
11. Did you try this cure?
It’s okay, you mean well. But if the parent tells you that they are fine with traditional therapies then don’t pursue the topic. They must have done their research, they must have consulted experts and there must be the reason why they don’t want to go for dietary restrictions, homeopathy, bio-med, Ayurveda or stem cells or hundreds do other alternative treatment options.
Instead, ask how therapy works and how it helps the kiddo.
12. It’s already been so many years, I don’t see the therapies working.
Yes, it’s been months and years but it takes time. Appreciate the patience. Don’t fill the minds of parents with doubts. Be supportive.
13. Oh, my son/granddaughter does this too!
Do not trivialize. Yes, our kids are kids at the end of the day and their way of expression may be the only thing that is different. But when you see a child being aggressive and a mother struggling to calm him while trying to protect herself simultaneously, do not say “oh my baby does this too”. Be there. Ask if you can help in any way.
14. Will the study? Will he get a job? Will he marry? Will he be a genius?
I don’t know. I don’t think any parent does. However every parent hopes.I hope too. And parents like me hope as well. it’s hope which moves the world after all. As for if every kid on ASD is an idiot savant, no it’s not true. It’s not the Rainman. Kids like that are there. They are extraordinarily gifted. Some make awesome paintings, some are genius with numbers, some are creative, some make apps. But it may not be true for every kid on the spectrum.
15. Silence is more painful than any of the above. Feeling of being left alone, being ignored is highly disturbing. Even if you feel awkward and don’t know how to approach. Still, do, and ask how can you help.
We would love if people ask questions because questions want us to look for and provide answers. Ask as many questions you have, even if you feel that those questions are idiotic and silly because no questions can be… Because by asking questions you are including us in your circle.
Be more open more accepting. Don’t widen your eyes, raise your eyebrows and take a hasty step back. These are kids you are looking at. Not animals at the zoo. Don’t be scared of them don’t panic when you see their “behaviors”. Love them, respect them, respect their caregivers, their therapists and teachers. And again. Ask questions. Read. Learn. Research. Google. Babysit. Invite. Offer to cook. Call up. Don’t take offense if they don’t talk. Accompany to a therapist. Offer a spa night. A movie night. Support as you would support any friend.