It's a marathon not a sprint...

When you finally come to accept that autism has hit your family, the first thing you wanna do is dig out the reason. You are constantly bothered by the 'why me' question. Was there anything wrong in the way I carried my baby during pregnancy? Did I eat anything wrong? Did I unknowingly expose her to harmful chemicals or rays? Is it my genes? My husband's genes?

The sad part is that there is no clear/100 per cent/convincing answer to it. A condition (autism) that has turned your world upside down is so cruel that it doesn't even tell you why you are the 'chosen one'?

This question doesn't leave your head even when you start with therapies. But you need to start and start early. When we met Dr. Amit Sen (Child and Adolescent Psychiatrist), we were sort of calmed down by him. He came across as a very learned, easy going doctor, who knows exactly what he is doing and what is he talking about. After an hour long session with him, we were guided to a few therapists and were asked  more questions about Avani to determine all the issues at hand.

It turned out that Avani has some sensory issues too (more on that later). This means that she has to be started on a sensory integration therapy which will be a part of Occupational Therapy, speech therapy and special education will constitute her Early Intervention Program (EIP). Now consider this - You know there is a problem with your child, you have been educated about the best possible 'cure', but you still can't start! Why? Because each therapy center has a long waiting list of children who need help!!!

So we waited and bugged therapists with our request to enroll Avu for a few weeks, before we finally got a call to join EIP at Milestones in Kalkaji. It started with 45 minute sessions of OT thrice a week. Avu would be placed on a baby seat in the car while I drive her to the center. So the first task at hand was to get her to sit on her seat and wear the belt! Not so easy as it sounds. I have driven to Kalkaji in maddening traffic trying to bear Avu's kicks and screams on one hand and maneuvering the car safely at the same time. Her tantrums wouldn't just end at that. For the first six months at least, Avu just couldn't adjust to the therapy schedule. At least twice in a week, she would cry out loud for the entire 45 minutes of a session. Not willing to obey, not willing to sit in one place, not willing to part with a toy, not willing to sit on a swing, not willing to do a certain exercise. Her screams would reach the waiting area for parents loud and clear. People would generally discuss, who's child is it and my hand would go up immediately to cover up for the embarrassment.

When you start going for therapies, you see positive changes in your child on a daily basis. You start believing that its just a matter of time that your child will be back to 'normal' and this gruel will be over. But then you meet parents who are coming to the center for several years and are still waiting. You see children at various points on the spectrum. Some are not even verbal, some have physical difficulties, a lot of them have a lot of issues from as small as bad hand writing to as big as no understanding.

You need to quickly accept that this race is not going to be a sprint it is a marathon indeed. But by this analogy, there has to be a finishing line! And am running...

Entering the world of Autism

Sometimes I wonder what is MY mark in bringing up my child. For about two years now, I am just going by what therapists or doctors  tell me to do. How to talk to my child? How to modify a certain behaviour? When to ignore her? What to feed her? Which school to put her in? None of these decisions are MINE! When Avani grows up, will there be anything in her character that resembles her mother's personality? Am not sure.

Autism is a complex neurological disorder. While some children are born autistic, it can affect others any time from birth to about three years of age. It is also a spectrum disorder, which means that it affects every child differently. While some autistic children are highly functional with very few affected areas, some others may be severely affected with physical disabilities too. That's why it is believed that if you have seen one autistic child then you have seen only one. Based on the diagnosis and progress of one child, you can't predict how the other would respond.

Between 15 months to two years of age is when all sings of autism in Avani came roaring at us. We were watching her very closely, spending more time talking with her, giving her less time alone and monitoring all the habits. And of course Googling.

Some of my first few searches were "17 month old not talking"..."Toddler not responding to name"..."Milestones from birth to 17 months"...all of these searches would lead me to autism one way or the other.

In a general autism red flags check list, we were overwhelmed with the number of ticks our child got!

1. W-sitting - yes
2. Walking on toes - yes
3. Bad eye-contact - yes
4. No speech - yes
5. No interest in peer group - yes
6. Fixations like rocking, spinning - yes
7. Lining of toys - yes
8. Doesn't acknowledge parents presence or absence -yes
9. Excessive tolerance to pain- yes
10. And of course Hyperactive - yes yes yes

How could I miss all of this?

On Dr. Jyoti Bhatia's recommendation, we also took a hearing test when Avu was 17 months. I remember each and every moment of that day. Before going for the test Yappy and I were secretly hoping that Avu fails it. May be she is 'just' hard of hearing that's why not responding to name and commands, may be there's just some wax accumulation in the ear drum and it can be sorted soon. These would have been relatively 'smaller' issues to deal with.

Seeing all those electrodes pasted on our toddlers skull for about an hour was one of the many heart breaking moments ahead. Within a couple of hours the test report was out. Avu has NO hearing issues. She can hear every sound at every frequency. Her brain responded to it.

Right...so there is no hardware issue, there's a software issue here. She can hear everything but still not responding to most of it. Why? Because her nerves are not sending the right signals to her brain to extract a response. 

We were recommended speech therapy for her. We were back home with more questions than answers once again. I started talking to a lot of people.Colleagues, friends, pediatricians. I spoke to a very senior development pediatrician. She is not practicing anymore and I have forgotten her name unfortunately. Her advise was simple - TRUST YOUR INSTINCT.

She said, a mother's instinct never goes wrong. If you think there's something wrong with your child, then do something about it. Don't listen to anyone else, just listen to your instinct.

I started taking Avani for speech therapy at ASHA Speech Centre in a few months. I had given advance fee for ten sessions but I withdrew her after four sessions only.

For the entire one-hour session, my child would just cry non-stop. The therapists' approach was to get the words out of Avani's mouth by luring her to a toy or candy or anything that she likes. But it was just not working. Those four sessions were perhaps the most torturous four hours of my motherhood so far.

I decided that even if Avani needs help, this is not the place or therapist where it's coming from.

A friend forwarded us the link of a homeopath in Chandigarh who claims to treat Autism. We went to meet him and started with his medicines ASAP. But by this time we were aware that only homeopathy is not going to help. We needed therapies and we needed to meet the right people.

I spoke to a former colleague who's daughter was also on spectrum as a toddler. His guidance I cherish dearly and without his help perhaps, I would have struggled a lot more and wasted more time.

He told us to meet Dr. Amit Sen of Children's First and get Avani's correct diagnosis. That was summer of 2013 and there is no looking back since then.