Parenting a Differently-Abled Child? Don’t Forget Yourself Too

We need to talk about the mental health of caregivers.

Mental health of caregivers is just as important as that of those they are caring for.

(Photo: iStock)

I haven’t stopped thinking about the seven-year-old girl in Bengaluru who was flung from the terrace of her apartment only to be picked up and thrown again as she did not die the first time. She was a child who couldn’t talk coherently, who wasn’t able to communicate how she felt, what she wanted, who stayed home the whole day, didn’t go to school, and had no friends.

A helpless, incapable, dependent child bore the brunt of frustration.

I also can’t stop thinking about the mother. Calm and composed, she changed her clothes after pushing the child off the edge of the terrace twice. You have to be possessed by insanity, extreme anxiety, and misery to be able to kill your own child.

They say god gives his hardest battles to his strongest soldiers. Not always.

Parenting a differently-abled child is a tough job. According to a research, mothers of adolescents with autism have stress levels similar to that of combat soldiers. Depression and helplessness are common side-effects.

Frustration, irritability, and anger gushes out often on their self and sometimes on the child. It’s hard to admit, but it’s a reality. I am a proud mother of an 8-year-old boy with ADHD (Attention Deficit Hyperactivity Disorder) who also falls in the autism spectrum.

He is the joy of our lives. But, am I always happy, spirited, and optimistic around him? The answer is no.

Also Read: How do you know when your child has it

The Caregiver Needs Your Support

Studies show mothers with autistic children have stress levels of combat soldiers.(Photo Courtesy: Mugdha Kalra)

When my son’s symptoms started to surface, we were in denial. We hoped it was just a case of delayed development.

Faced with a full blown diagnosis, we had little option but to come to terms with reality. It took us four years to accept it, but we did eventually.

Much needs to be done for the mental health of the caregiver – in this case, parents of a differently-abled child. When the condition is diagnosed, therapies and interventions are advised and prescribed for the child, but no one tells the caregiver, ‘hey, you may also want to meet someone to talk to.’

A parent needs to be counselled to understand their child’s condition and move forward without fear, doubt, blame, and self-pity. And, if the parent is already diagnosed with a previous history of depression or anxiety, then their condition need to be recognised and addressed.

Also Read: I write about you, not him: Autism Day Special

Don’t Lose Your Identity

I had a fairly successful career as a television news anchor before I took a sabbatical to focus on my son. It’s the same story of a dozen other mothers who quit their job to become ASD mommies. Our self-esteem was directly proportionate to our jobs, and without a professional identity, we felt we were nobody.

I researched the subject immensely, blogging about it, being part of support groups. I felt like I needed to justify my sabbatical. I didn't have to though.

I dreaded answering what I did for a living every time someone asked me. Women face their first setback here. The ones who quit work understand why they need to do it, but are never completely happy with it. The ones who can’t quit live with constant guilt that their child could have perhaps improved faster if they stayed home. But, if you can work while taking care of your child, then you must.

Give yourself a break. Make time and don’t always put yourself last. (Photo Courtesy: Mugdha Kalra)

Developing patience for a special child is perhaps the most gruelling task. Many autistic children – whether in the spectrum of mild, moderate, severe, or pervasive – find it very difficult to communicate and have sensory overload that makes them indulge in repetitive behaviour, screaming, and shouting.

How did I deal when my son randomly screamed about three years ago? I just got used to it. My ears became immune to the noise. Once I accepted it, we moved on to finding a solution.

I needed music to calm myself down and drown his noise. Surprisingly, music kept him calm too. One has to find their healthy zone-out tools, whether it is meditation, music, walks, hobbies, or occasional breaks. There are so many days when you feel like having a drink after a hard day’s struggle, much like after a hard days work for ‘regular folks’. Yes, we make a distinction between ‘regular folks’ and ASD parents.

As ‘ASD parents’, we need to find a healthy ‘what-makes-it-better-for-us’ tool rather than succumbing to smoking, liquor, or drugs.

I didn't think much about my health until the day a dear friend’s word changed my life. She has a daughter with down syndrome. Over a cup of chai, she let it out: “We need to live longer for our children, so we better take care of ourselves.”

You need to stay healthy to be able to cope with the stress, to feel good about yourself, and yes, to live longer for your child. Sleepless nights are a routine for parents whose children have sleep disorders or a history of seizures. You need to make sure you get at least six hours of sleep.

Co-Parenting Takes on a Whole New Meaning

Support from the spouse is the most important factor in helping you keep it together. Unfortunately, in many cases, mothers are left to deal with parenting the special one.

Co-parenting assumes a whole new definition when it comes to raising a differently-abled child. You have to take turns to give the other some time off. You have to share chores. While I understand that one of the parent steps out to earn money, it is still important to share the emotional load. The child is as much yours as it is hers.

Another study suggests that parents of autistic children are more likely to separate or divorce. The cumulative strain of bringing up a child with autism results in their parents being more likely to divorce as they gets older. A marriage or a companionship suffers immensely if the individual drowns themselves in the agony of their circumstances. Life becomes about complains, bitterness, blame games, and venting out anger.

As a rule, my husband and I try not to vent out our frustration on each other. A therapist is a good option if you don't want to saddle your loved ones with your pain. And if your family and friends have the patience for your rant, than consider yourself lucky.

Having a differently-abled child is not a curse. It is just tougher than regular parenting. But, the joys and fears are all the same. Modern day interventions have made it possible to overcome these shortcomings and manage these conditions well. It is a mindset, a will to heal, and sense of self-preservation that makes it easier and even purposeful.

(Once a news anchor, now a full time mom. Foodie, avid reader, film buff, and erratic blogger, Mugdha Kalra writes about living with a nonconformist)