“Oooh! She is so adorable, so pretty,” a voice raved, gushing about a toddler dressed in her fuchsia dress, walking her new found steps. “How old is she?” Another voice came. The proud mother replied with a glint in her eyes, ” 10 months.” Wow! She is very active for a 10 months old, walking already!” the first voice marvelled again, shaking her head in disbelief!
You tend to ignore such casual interactions taking place at a shopping mall in kids section but when you notice another mother of a young daughter with Down syndrome, standing within close proximity of that conversation, trying to pretend of not hearing anything at all; your heart goes all out for her and for that child. Especially if you too have a special someone waiting for you at home. You feel angry when people just look through your child or that child because if you are a special mother, every special child is yours, period!
I know, before Aarshia was born, I too used to look at the disability as if it was meant for others. While I still believe I was extra sensitive but never really cared to know more.
And I am also sure that a lot of people who do not have any special need person in their inner circle, do get uncomfortable in their presence. It is not always because of insensitivity, but more because of lack of awareness. A lot of people still don’t know how they are supposed to behave or what should they say or do, when they see a special needs child in a market place, theatre, road or in their neighbourhood. It is more common in developing countries because the awareness here is still at a nascent stage and it is only a few years that people are bringing their special kiddos out of their homes.
I am no expert but from a mother’s point of view there are certain things that definitely hurt. And while there are many articles available to address this issue, no guide book for common sense was easily available. So I decided to write a quick guide for all my friends, their friends and others to give you simple directions on what to do/say or what not to do /say, when you meet a parent of a special need child. ( All the things I have shared can’t be universal and some of it might just be Country specific )
First the things that you rather ‘Not’say!
1. I am sorry– Don’t be! We as parents are not. Smile instead and say ” Good morning or he has beautiful eyes!
2. What’s wrong with him – Trust me it’s a very very bad question to ask. Our kids have extra needs but there is nothing wrong with them.
3. God only gives responsibility to those, who can handle or I couldn’t have handled it– With all due respect, this explanation really hurts and its not the expression, its the feeling like thank God ! its you, not me! definitely not needed.
4. Did you consult a doctor? – Really? Doctors and hospitals are the most frequent places that the parents of special needs children pay visit to. Sometimes these are the only places they go to especially for first few months or years. A question like this can bring a lot of negative emotions. Stay away!
5. Can she get married? – somebody asked me this and I completely lost it. She had just turned 5 and I ended up giving that somebody a big piece of my mind. Come on, getting married is not the sole aim of every human being on the face of this earth. There are people who can justify their existence without reproducing, unlike lot of others asking this question. ( can’t believe I actually said this 🙂
6. My son could walk at one and talk at two- I know some two year old can count till 100, write alphabets, make castle with legos and a few of them are building a space rocket as we speak. But hold your horses! My 6 years old is still struggling with lot of things. While It doesn’t mean that we parents get jealous but it definitely means that please spare us with the enlightenment every now and then. Please understand, when we are still struggling with that pencil holding skill, the last thing we need is boasting about your ‘over achieving, rocket building child’
7. No small talks puhlease! Statements like Poor thing! this could have been worse or This is the best disability to have, are not meant for small talk or any other talk for that matter. ” Why didn’t you have an amnio? Or was your pregnancy ‘normal’? We know most of the time, your intention might be perfectly in place but the new situation your friend or family member is in, can make them extra sensitive and extremely vulnerable so try empathy not sympathy.
Things you can say to “New Parents of children with Down Syndrome or other disability”
Action convey better than words. Try to be a good listener and do something that will matter to the parents. Give them a hug, baby- sit for an hour ( if possible), offer help, take meals along. Do mean the help that you are offering. Initial few months are heart breaking for parents, so be there if you care.
Try to read some information about the diagnosis. You don’t need to be a research scholar, just knowing small things would be helpful and parents would know that you are concerned.
Sometimes new parents can be sad for an extended period of time. Try to Bring conversations about ordinary things.
You can try saying…
• Compliments on things like her hair, eyes, skin or resemblance to parents.
1. She has great hair.
2. Her skin is so soft.
3. What an infectious smile.
4. She looks just like her dad!!
Show your concern by holding the baby or taking the sibling for a walk to give parents some time.
You can also say things like-
1. I know it is difficult but I am sure this time would pass.
2. You have my support.
3. I can imagine what you are going though. I wish I could help.
As I always say, it is the intention that matters. A lot of times, the worst words don’t hurt as much if you know the intent was not to hurt and at other times, a simple question with insensitive tone can ruin a relationship, so if you have a friend, a family member or a neighbour who have got this special someone recently in their life, extend help, offer support and be genuinely happy in their happiness.
Remember all it takes is a smile.