Parenting A Child With Autism? Here's One Thing You Can't Afford To Forget

25/11/2015 8:59 AM IST | Updated 15/07/2016 8:25 AM IST
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(AUSTRALIA & NEW ZEALAND OUT) Kevin and Katherine Stevens with their autistic son Carlos at their Newtown home, Sydney, 10 October 2006. SHD Picture by ANTHONY JOHNSON (Photo by Fairfax Media via Getty Images)


It was 1992. Mohit, my son, was diagnosed with autism. The doctor told me that 1 in 10000 children is diagnosed with the condition. I had no idea what autism was. I was shaken emotionally, mentally and physically. I had a newborn daughter to look after. Thankfully, I have a very supportive family, who helped and supported in every way they could.

Basically, I jumped headlong into any therapy that offered even a wee bit of promise. I did not think of myself or other family members. They could take care of themselves, couldn't they? But I had to pull Mohit "out of autism" and I only had a "five-seven year window" to do this. I travelled every year to the US and tried everything that the Western and Eastern worlds had to offer - biomedical treatment, swimming with dolphins, sensory integration, ABA (applied behaviour analysis), auditory integration therapy, vision therapy, homeopathy, natural treatments, ayurveda, Korean natural herbal medicines... there were many more. I have just lost track. I spent five hours a day working with Mohit on a strict ABA Discrete Trial Program. All I could see were goals, objectives and data sheets.

"I remember putting in five hours of therapy per day besides Mohit's school hours. The days that I didn't get the five hours in were hellish."

Those years of my life passed in a haze. They were the prime years of my life; years which I lost to grief. And it was not until much later that I realized that I had carried the grief of this diagnosis for too long.

Yes, if your child is diagnosed with autism, you will experience grief too. It's normal, because you have a heart. But will you know what this grief looks like? What are signs that you should be looking for?

Signs You Need Help

1. You feel guilty

You feel terrible about enjoying anything. Going out for a meal, watching a movie, meeting a friend -- they appear like luxuries and you constantly feel that you should be doing something to help your child. If you are a mom, this feeling of guilt will be intensified. I remember putting in five hours of therapy per day besides Mohit's school hours. The days that I didn't get the five hours in were hellish.

2. You stop taking care of your appearance

What you wear and how you look no longer feel important. You start neglecting your body, your hair, your clothes. Gradually, the person in the mirror seems more real than the person in your wedding photographs. Everything is only about your affected child.

3. Binge eating, shopping, drinking

All these are means to numb the feeling. You feel stressed out. (If you are feeling stressed, here are five ways to overcome it instantly.)

4. You feel overwhelmed by sadness and anxiety

I remember being extra-sensitive to any comment made on Mohit. I spent countless sleepless nights worrying about the future. Many other nights, I cried myself to sleep.

5. You feel spaced out

You hear what people are saying, but you are not really listening. You are looking at somebody, but your mind is elsewhere. You are present, and yet you are not.

Have you experienced any of this? If yes, take this post as a big warning bell. If this grief is not addressed, it could lead to depression, bouts of anxiety, or panic attacks.

As parents, we must prepare ourselves for a marathon. Unless we are physically and mentally in shape, we cannot participate in it.

I want you to avoid my mistakes. I want you to do the one thing that I should have done, and you probably have forgotten to do if your child is diagnosed with autism or any other learning disability: Take care of yourself first.

Get in touch with a mental health professional, a counsellor, or anyone who can help you -- NOW!

Also, make sure that you make certain changes in how you use your time.

How To Take Care Of Yourself

1. Me time

Exercise, meditation, any spiritual practice that you enjoy is a must. What are your hobbies? What do you enjoy? I love to read. But I'll let you in on a secret: For many years, while attending to Mohit, I stopped reading. I lost touch with myself.

Don't do this to yourself. Pursue your hobbies. They will keep you connected with yourself.

2. Us time

This is time that belongs to you and your spouse. When was the last time that you both went out together? I ask this question to every parent who visits me. It's not uncommon for them to have no answer. Your marriage has to be rock solid to withstand autism. If somebody can babysit the child, both of you should take the time to catch up with each other.

"I love to read. But I'll let you in on a secret: For many years, while attending to Mohit, I stopped reading. I lost touch with myself."

Start over coffee. Then get into a meal, a movie, a concert - anything that you enjoy doing together. Keep the spark alive.

3. Family time

From a young age, involve the child in what you like, or what interests you. A family outing, a meal together, with parents and siblings -- all these create shared memories. Don't forget to take pictures of these happy moments.

Later in life, you'll be glad that you did.

4. Sibling time

Your other child feels the pressure too. In fact, I will go out on a limb to say that they feel more stressed. They feel neglected. They feel that the child on the "spectrum" hogs all the attention. Make that special effort to make the sibling(s) feel special too. Sometimes it could be mom, dad and sibling (without the affected child).

This is important to make your other child feel cherished. The mental health of siblings plays a significant role in this fight against autism's limitations.

5. Time with friends

I can't emphasize how therapeutic spending time with your friends is. With friends, you can let your hair down, talk about things not related to autism. It gives you the breather that you thoroughly need and deserve. Just like charging your batteries.

Surround yourself with people who bring out the best in you. We certainly don't need people who pity us or our children. Steer clear of negativity.

Once you are in a fairly stable state, start looking for information about autism.

Again, you will be deluged with advice from "well wishers". You will be swamped by information on the internet. I want to sound out another warning bell to you here. Take everything with a pinch of salt. Don't rush into things. Take your time to make wise decisions. There are some myths that are widely circulated, so be careful about what you believe in.

The journey is arduous and the terrain very rough. A trusted guide will help make your life easier. You will need a qualified professional who is able to look at the core deficits of autism, as displayed by your child; someone who will guide you and set objectives that remediate autism and empower you as a parent. Attending parent training is of paramount importance.

"Mohit is 26 now. He has taught me lessons like no other. I have emerged stronger. I have emerged a compassionate, connected person."

Mohit is 26 now. He has taught me lessons like no other. I have emerged stronger. I have emerged a compassionate, connected person. My perspective about life has deepened.

Today I love life. I cherish living in "Holland" (I hope you have read the piece by Emily Perl Kingsley). It doesn't have the fast pace that "Italy" has, but it has beauty, simplicity and depth. And by the way, next year I will be visiting Italy with Mohit.

If you feel like I can help you and your family, please feel free to get in touch with me. I would also love to hear your thoughts, your stories, challenges and victories.

P.S: A workshop on 'Finding the missing pieces of the Autism Puzzle' is being conducted in December, with international consultants coming to India to speak on the topic. You can find out more about it here.

A version of this post had earlier been published on the SAI Connections blog.

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