Warning: Don’t Give Your Parental Power Away

My heart went out to the young, pretty mother sitting in front of me.
She talked about her daily struggles with her young autistic child.
She wasn’t happy with his regular school and wanted to know if she should opt for a change. Having moved to the city for better education prospects for her child, her entire time was spent in taking care of his needs and her home.

As we went deeper into the conversation, I realized there were more pressing issues than the choice of schooling for the child.

She was giving away her power to other professionals working with her child. So much like the young Kamini with the little Mohit.

Flashback… 25 years ago in Mumbai

I was in a session with a Speech Language Pathologist who demonstrated an activity to work on. Amidst this activity, Mohit started to cry. I reached out to console him. I looked up to see the therapist staring at me disapprovingly. “You shouldn’t have done that. He’s doing that for attention.”
My mind screamed aloud. “I want to hold my child when he’s distressed.”

I felt inadequate.

Flashback… 23 years ago in Los Angeles

We were at a world famous Clinic. The supervisor was teaching me to run drills with Mohit. He was on a GFCF diet. She insisted we reinforce with M&Ms. “But he’s on a specific diet.” I protested. She continued to reinforce him and then turned around to tell me, “See- it works! He did so much better.”

I felt violated.

Flashback… 21 years ago in Seoul.

I waited for a low down on Mohit’s behavior at school from his principal.
She shook her head. “I wonder why we take such students in our school when we can’t handle them,” talking like I didn’t exist.
I wished the ground would open up and swallow me.

I felt like a non entity.

Those feelings of violation and rejection were extremely painful. I get that sick feeling in the pit of my stomach, thinking of those days.

Then I breathe a sigh of relief. Thank God, I overcame the situation.
I turned it around by empowering myself.
To all you lovely mothers out there- you can do it too.
It’s not easy but if not now, then when?

Follow these steps to grow into the person you’d like to be. Be the mother (or father) your child needs.

1. Understand the depths of autism

Educate yourself. Autism is not about speech or behaviors solely. Think about the underlying core deficits. (hyperlink)

Autism results in the loss of the back and forth guiding relationship between parent and child. This feedback loop just did not take off like it does in typical development.

It is not your fault or your child’s fault. You did not do anything wrong.
It’s due to lack of neural connectivity.

Thankfully neural connectivity can be developed- at any age.

2. Become the main guide in your child’s life

When Mohit was little, we lived in Seoul, South Korea.
I had an SLP (Speech Language Pathologist) and Special Educator coming home a couple times a week.
I always felt something was missing- till I got trained.

It was difficult and cumbersome. Initially, I had to travel every 6 months to the US. I had to video my work with Mohit and send it for review. Back in those days we didn’t have the luxury of YouTube. I remember shipping those big, black video tapes every month.
It was all worth it.

Once I started putting in a few hours with Mohit everyday, I no longer relied on anybody else. And the feelings of inadequacy slowly disappeared.

Those weren’t even the techniques I would recommend today.
But I became empowered to teach my child. I was self sufficient.
I became the best teacher for my child.

After a few months, the special educator and SLP noticed the change in Mohit and they adopted my style of work. We became a team.

3. Do less- not more

Your time is limited.

Do what is necessary. Take guidance from professionals and implement that yourself. Trust me – you have it in you.
I have never seen a mom who didn’t have it in her.

Calculate how many hours you spend driving your child around from therapy to therapy. By all means, go for therapies which are necessary. But you don’t have to do everything that’s out there.

Use the saved time to interact with your child. Play with him. Have a typical parent- child relationship. Do not carry the autism label so heavily.
Remember, life doesn’t come to an end if your child has autism.

4. Be consistent

Put in an hour everyday.
Don’t overdo it with putting in 5 hours one day and 0 hours the next.
It will not help your child. Besides. You will burn out quickly.

One hour of focused, 100% effort will take you a long way.
It’s about the quality and not quantity.

The result of this will be what you’ve been aspiring for.You will become empowered. You will know and understand your own child, like nobody else.Therapists will hesitate to give you advice about your child.Instead, they will take your input while working with your child.You will no longer feel inadequate and insignificant.You will occupy the place in your child’s life that is rightfully yours.

Many situations in life will challenge you.
I experience challenges too.
But I remind myself, “You overcame it then, you can do it again.”

source

Your autistic child is here to teach you about life.
About your inner strength and courage.
Are you ready to listen and learn?

You have a choice. You can hand over your powers to others working with your child.
Or you can grow to your full stature and be the parent your autistic child deserves.

Always remember you are the queen of humanity.
Regal on your treasure throne.
Blessed with a world rich in color.
Strive to concentrate on your mission.

Dr Daisaku Ikeda