One day… two families… two stories.

 

In the morning with Family 1

 

She’s grief stricken. I can see the desperation in her eyes, in her body language. I can hear the pain in her voice.

 

“When will my child talk? And do you know a good ‘normal’ school that will give him admission? My niece talks so much. Everyone at home pampers her. But my poor son, he can barely say a few words.”

 

“I know the feeling.” I say.

 

“If he talks more and if he gets admission in a good school, everything will be fine.”

 

I portray a calm exterior. Deep within, pain lashes at my heart.

 

This beautiful young woman, sitting across me, doesn’t realize that this is the beginning of a marathon.

 

Just getting her son to speak or go to mainstream school will not be the answer.

 

Later in the day with Family 2

 

“Our son is high functioning. He has different needs. He talks a lot. But of late, he has started developing many behaviors, such as pinching and crying. He throws tantrums pretty often too. If only his behaviors get under control.”

 

“You said he talks a lot. Does he talk to you?”, I ask.

 

“Yes, yes. He answers all our questions. He can read and write too.”

 

“That’s great, but does he talk to you?” I ask again.

 

After a pause, “I think he can have conversations. But he is not consistent.”

 

“Okay, what about interactions at school? Does he connect with people? Does he have friends?” I ask.

 

“We arrange play dates for him. His class mates come home. They play in the same room, but not with each other.”

 

I have all the answers that I need.

 

These conversations could be incidents along the continuum of the same wave.

 

Memories come flooding in.

 

I see myself begging school administrators to admit Mohit to their schools.

 

I watch myself waiting at the bus stop at 4 pm in a windy, snowy Seoul. Shivering, not so much from the cold but from the fear of being told how ‘badly behaved’ my 6-year-old was.

 

I could have been any of these young mothers sitting in front of me.

 

But it’s time to get back to reality.

 

1. The Reality of Respect

 

I don’t like these labels of ‘high functioning’ and ‘low functioning’. In fact, I don’t understand them.

 

 

Every child (and adult) is different and should be respected.

 

Yes, I realize these labels come up in the context of diagnosis.

 

And yet, I’ve seen many parents who put themselves in an exclusive club of the ‘high functioning’. They act hoity-toity around kids who are not like their own kids and openly say, “but my child is not like this, he is high functioning.”

 

Why are we creating divisions and differences amongst people on the Spectrum?

 

We talk about autism acceptance. We want the world to accept autism.

 

We want the world to respect our children, don’t we?

 

Do we ourselves understand the connotations of the words ‘accept’ and ‘respect’?

 

2. The Reality of Success

 

In Autism Land, success is measured by children attending mainstream school and talking.

 

Let me get the speaking and communication angle, which I’ve written about extensively, out of the way first.

 

Reciprocity, mindfulness, emotional sharing and motivation are the foundations of communication. Is your child communicating?

 

Do you know the difference between speech and communication, and how to bridge the gap?

 

Is your child non vocal? Don’t lose heart. He can still communicate.

 

Let me reiterate: it takes 2 to talk. It is about communication and not merely speech.

 

I spent precious years trying to build speech, and failed. It just did not work.

 

Don’t go through what I did.

 

“But what about mainstream schools?”, you ask.

 

It may make you, the parent, feel good. But it may not help the child. Here is how you can find the answer to the above question yourself, and fulfill the role of a good parent.

 

Ask yourself with brutal honesty: “Is my child learning in this environment?”

 

If yes, please continue. Some children thrive in the school environment.

 

If not, find an alternative arrangement where your child will learn and continue to grow.

 

(Feel free to contact me or one of these experts to help you make a decision about the best fit for your child.)

 

Like everyone else, I was gung-ho about this ‘school-speech’ concept.

 

Then… I made a paradigm shift.

 

Today I measure success differently.

 

Let’s call these the ‘Awesome Threesome’

 

1. To live as independently as possible

 

We will not live forever. In all probability our kids will outlive us.

 

Some may be able to live independently. Some may need assistance due to medical or other reasons.

 

Whether our kids continue to live at home, in group homes or communities, we want them to make decisions on their own; we want them to solve problems that arise, isn’t it?

 

We don’t want them to be dependent on others.

 

2. To have meaningful relationships

 

The connection must be in place – first and foremost with parents.

 

Other relations like friendships, relationships and even marriage are built on top of this.

 

3. To hold down a successful job or career

 

If you have a fulfilling job and if your work satisfies you, it has a big impact on the quality of your life.

 

Why should it be different for those with ASD or other developmental difficulties?

 

Mohit is a talented artist. I would be thrilled if this was his career.

 

 

At SAI Connections, we have a Patisserie. Some of my young adults do exceptional work there.

 

This is a great career option for them.

 

Sushma Nagarkar and her team have set up an excellent tiffin service, called Arpan Tiffin Service. (Email: sushama@arpanmbai.co.in or Call: +91 9892 418 057)

 

6 lively, spirited young adults form the team. They provide nutritious meals at reasonable rates.

 

What a fulfilling career to have!

 

It is all about affording dignity to a wonderful human being.

 

There is one simple step that you can take to make the ‘awesome threesome’ a reality.

 

Have a relationship with your child. Create an ‘us’.

 

Do you feel that your child does not understand your feelings? Your joy, your tears, your dreams? Neurotypical children look at the world through the eyes of their parents.

 

Unfortunately, kids on the spectrum don’t.

 

This necessitates creating a bond, understanding non verbal communication, and creating trust between parent and child.

 

The following activities will help create this bond, which will enable your child to navigate the world through your eyes and understand your perspective.

 

Activities for young children

 

1. Jumping into bean bags together

2. Rolling a ball back and forth

3. Blowing bubbles with your child

4. Finger playing with music.

 

In each of these, have a clear role for both of you.

 

Add anticipation. Share your emotions, laugh with each other.

 

Once a back and forth is established, add in little variations.

 

Remember it’s about the process, not the product.

 

Here’s a lovely video of a guide and child blowing bubbles together.

 

 

The child has a clear, well defined role of going to the guide and putting the wand into the bottle.

 

Only then does the guide blow bubbles.

 

Note that there are no instructions given. The child ‘understands’ what he has to do. He knows his role even when the guide moves around.

 

His body has become calm and regulated too.

 

The ‘us’ is being formed here.

 

Note the slow pace, less words and the emotional sharing.

 

Activities for older children

 

1. Ball activities

 

Pass the ball around by rolling, throwing, kicking, bouncing.

 

Join in and play with your kids. Do not be the instructor. Be a participant.

 

Establish a pattern. Then add in little differences – different types of throws, different kinds of balls, changing positions etc.

 

Do not focus on perfection. Focus on enjoyment and sharing experiences.

 

Once simple ball-play is in place, more complex and natural games can be introduced, with different partners and other children.

 
These could include basketball, cricket, squash, table tennis and tennis

 
2. House hold activities
 

What are activities that you do around the house?

 

Putting clothes in the washing machine, drying clothes on the clothes line, dusting/cleaning furniture and cooking are some, right?

 

Involve your child in what you do.

 

Allocate a clear role. Use eye gaze, share emotionally, share responsibilities.

 

Let your children solve problems. Never give them all the solutions.

 

Let them think. Use the 45-second rule, where you wait up to 45 seconds for them to respond to a question or situation or figure out a way to solve problems.

 

Rest assured, they will surprise you with their intelligence.

 

Most importantly, let them make mistakes and learn from these.

 

Note all the above points in this well paced video of putting books away in a book shelf.

 

 

Look at how the interaction flows in this. The guide is purely invitational. The student chooses to overcome distractions and comes back to the framework. The student problem-solves in various situations and takes an active role.

 

Most importantly, no instruction is given by the guide.

 

There is an unspoken understanding between the two.

 

What activities have you tried with your child?

 

Do add to this bank.

 

I’d like to highlight something here. I’m not saying to just do these kinds of activities. These are to build a relationship with your child and get the ‘us’ in place. All these will help with dynamic intelligence.

 

Continue to work on literacy. Get the right academic programs in place.

 

Work on the therapies that your child needs.

 

Expose them to the real world.

 

Remember, your child has to fit into your world and with your family.

 

Let the ‘awesome threesome’ be your guiding star to measure success and growth.

 

It is mine too.

 

Each night before I go to bed, I ask myself if Mohit has inched up a little with the ‘awesome threesome’.

 

If the answer is “yes”, then it’s a day well spent.

 
A pyramid isn’t built from the top down. The apex is attained only by laying strong foundation stones, one by one. The same is true of achieving a lofty objective. The crucial thing is to lay the first stone, to take the first step. – Dr Daisaku Ikeda

 

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