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‘Special Needs Parents Don’t Need Your Judgement, They Need Help’

It's not easy being told that your child is not like other children, and will never be like other children.

Updated
Fit
4 min read
‘Special Needs Parents Don’t Need Your Judgement, They Need Help’
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Don’t get me wrong, but I kind of get why she did it.

It isn’t easy being told that your child is not like others and will never be. It isn’t easy to understand why you were chosen to have a child that is different.

It isn’t easy to figure out why the child is crying non-stop or not responding to what you are saying. It isn’t easy finding support or even asking for help.

Your marriage is strained, you give up on your career, on your health, on friends, and life.

You are lonely, scared, anxious. You can’t live in the moment because it suffocates you and you can’t think of the future without fear. And when you look at the past it is just with deep regrets. Regret that this ever happened.

Your anguish about what your life has become is much deeper than the love you feel for the child. You suffer silently.

And then, one day, you snap.

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This isn’t the first case and unfortunately, I can say it won't be the last. Bangalore itself saw a similar incident a few years ago where a mother threw her child off the balcony and on finding the child still alive brought her up and flung her down again.

How, one wonders, can someone be so heartless, ruthless or evil? Ask a special needs parent like me and we wonder how depressed, miserable, dejected, and deranged must she have become to have let insanity take over.

There were red flags. Oh, there were red flags. She had abandoned the child before. She was clearly giving signs but was anyone taking them?

They say parenting isn’t for everyone. Well, special needs parenting is a whole new universe where even those cut out for parenting, struggle. They are exhausted and frequently become depressed.

Only the ones who understand the importance of self-care thrive and the rest just soldier on. Talking of which, University of Wisconsin Madison monitored stress levels of a group of special needs mothers and their research read- ‘Autism moms have stress comparable to combat soldiers’.

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On an average, I speak to at least two parents of a newly diagnosed child with special needs in a week. And my question always is, “How are you doing?”.

I try and learn about their families, the backgrounds they come from, the level of acceptance and maturity of handling a diagnosis. It tells me how easy or difficult this journey is going to be for this family. On support groups, I often encounter parents who are always angry or always sad.

The ones who ask too many questions or the ones who worry if they are doing enough. But these are folks who are in a support group and perhaps have found their community to vent, lash out, cry, share, laugh, and seek help. But for the majority, it is a lonely battle.

Recently a department of NIMHANS Bangalore, asked me to speak to their new counselors about a special needs parent’s journey so they could better understand how to be a team and help the child. And all I could say was first work on the parent.

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The burden of acceptance is huge. In their cycle of grief parents get stuck on phases that need to be crossed to get to acceptance.

The grief, denial, resentment, fear is overwhelming and add to that; lack of awareness, lack of acceptance, societal apathy and judgement.

It is very hard to deal with your own anxiety when you are trying to find how best you can help your child. And in the process, you forget yourself. Melancholy becomes life.

It is much tougher for women for they become the sole caretaker. Fathers find their outlet working and stepping out as providers. For most women there are no breaks.

And so, the first most important thing is counselling of the parent and finding support for the family.

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Deep understanding of the diagnosis with awareness ensures that they start to feel that the child may be different but if given the right skills will thrive in their own way.

The child has not known any other life to make comparisons so they will bloom where they are sown with love and support.

Much can be said about the support our government can provide to families with special needs but that’s for another day.

For now, just go back with a thought that if this woman had found counselling support or intervention at the right time perhaps this wouldn’t have happened. The law will decide what happens with her but I do hope someone hears her out before that.

(Mugdha Kalra is a Special Needs Parenting Coach and Co-Founder of Not That Different, an effort to talk to neurotypical children about neurodiversity.)

(At The Quint, we are answerable only to our audience. Play an active role in shaping our journalism by becoming a member. Because the truth is worth it.)

Read and Breaking News at the Quint, browse for more from fit

Topics:  Bengaluru   Autism   Child Abuse 

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