Getting the right mix

After reading my last blog, where I perceived our journey through autism as a marathon, a friend wrote a comment. She says, "I feel it's not a marathon or a sprint... Its a walk you take with your child everyday, watching them grow, struggle and in pain....and each passing day you will realize the importance of life, small things ...a smile, a laugh, a gesture, a simple beautiful childhood, which we usually ignore in a normal life." I must admit, this is a better point of view. It is very appropriate to call it a walk. 

Avani and I are indeed walking together. In fact, our entire family is taking this walk with us. Those small-small milestones that parents of typical kids take for granted mean so much for a child on the spectrum. I remember the joy we felt when Avani started imitating actions and sounds last year. Our excitement knew no bounds. I could just go on and on hear her repeat mama, papa, nona, nani, dada, dadi after me!!! Even going on to enjoy her repeat silly sounds like 'kee-koo', 'pee-po' blah blah!!!

While we do spend a lot of time cribbing and crying over what we don't have, appreciation for what we do takes a back seat. I get to meet mothers of children with special needs almost on a daily basis. In one of our conversations, a mother of an autistic child said, "isse to acha isse CP(Cerebral Palsy) hota, at least we wouldn't have to worry about cognitive development and hyperactivity." Imagine the plight of a mother who is asking for one disability to replace another. As a parent on the spectrum, the first lesson that one learns is not to judge any parent. We do encounter innumerable difficulties in dealing with our children on a daily basis. May be her child gave her a hard time that day. But my assurance to her was only to be thankful to God for small mercies. Look at the fact that your child has no physical disability. If we work hard on our autistic children, it will be much easier for them to mix up in a crowd of typical children. Don't know how much it worked on her but at least I tried.

Amongst the steps we have taken with Avani so far, I am satisfied on various levels. I know she will do well ahead too. My only fear is that I may end up taking a wrong step in my over involvement in her sometimes. Our homeopath sort of bluntly told me yesterday that I am a 'control freak', he advised that I take a dispassionate view of my child's condition. Yappy complemented his view quite well. He says that if we zoom in on a subject too closely, the picture becomes hazy, zoom out a little and you can have a perfect frame with a perfect picture. 

It holds true for us. There are so many different therapies, medicines and strategies explored all over the world to help children on the spectrum. It is impossible to explore everything for your child. The best solution sometimes lies in the simplest of action. If  a particular program is working well for a child, then there is no need to disturb it. But that doesn't mean that you shut your eyes to anything. You can always learn about new developments and apply some if you get stuck at a certain level. 

I know of so many parents who flatly refuse to get some basic allergy tests done on their children because they fear that if the child turns out allergic to some basic food items, they may have to alter their life style forever! But this is sort of cheating the child and denying him/her a healthy life. We got a complete allergy test done on Avani recently. She turned out allergic to Milk and all dairy products, almonds and even onions!

Unknowingly, we were feeding her things which her system was allergic to. Following a diet without milk, onions and gluten is just going to be a small sacrifice for a larger benefit. That's why it is better to be aware and be prepared than be sorry later. And who knows, may be this small action of diet control can lead me to unravel the hyperactive behavior mystery of my child!

Avani on her first birthday!

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.

Its New Year already?

2014 wrapped up quite early I think. It was only a while back that I was calculating like a mad scientist the right dosage of therapies for Avani. Which therapist to approach, who is not benefiting enough, what line of treatment to consider...

After eight months of continuous intervention, I thought the results were not matching my expectations. I wanted to see what else can we do to push Avu's limits further.

I was not satisfied with the Early Intervention Program Avani was enrolled in. I had a strong feeling that my child's potential was not fully explored. I wanted additional hours of OT, a new special educator and above all a speech therapist. Her OT at the time suggested we try Play Therapy as well.

Time to bug therapists with appointment requests then. I quickly lined up in long Que of parents for a renowned speech therapist in South Delhi, a highly recommended special educator in East Delhi and a young and hard working Occupational therapist for home sessions.

My 'experiments' with therapies and therapists are mostly based on the feedback from other parents. I try my best to keep review meetings and new appointments only when Yappy is with me. It just releases a lot of pressure and gives a sense that we are in it together. But circumstances may not always permit such luxury. It's usually me who decides when is the right time to start which therapy? Who is the right therapist for Avu and why? Hours in which therapy should be cut to increase the other etc. etc. Taking all these decisions is overwhelming at several levels. Is my child a thing to experiment with? Am I playing with her life? What if anything goes wrong or backfires? I will only have myself to blame.

By February, 2014 we were going for 6 sessions of OT (two at a centre and four at home), two sessions of play therapy, two sessions of speech and two sessions of special education. Phew!!! Can't even think of another three year old in my immediate family or friend circle going through such rigorous schedule.

Reflecting back, three out of those four decisions turned out quite well. We are happy with the way Avani has progressed with the new special educator, OT and speech therapist. Only play therapy resulted in a bit of waste of time, energy and money (oh yes!), else all is well :). By June 2014, Avani was attending group therapy sessions as well.

My goal for 2014 was to get Avani some kind of school exposure. The last she had it was when she was only about two and we enrolled her in a local play school near our house, hoping she would learn to talk amongst other toddlers. But it was a waste then, as all Avani gained from that experience was more hyper activity and zoning out in her own world. Thank God I tried it only for three months and got serious about her therapies.

So in all the meetings that I had with Avu's therapists, I kept on insisting on her preparation for a school set-up. Just get her school ready was my only plea. We went for a few school interviews as well by September. To our disappointment, our child was not yet ready for a big main stream school, but her special educator suggested that we can still try another small play school to train her better.

She advised us to meet the owner and Principal of a play school near our house. This lady I was told has worked on an ADHD child in the past and has shown great results. We found Ms Shalini at Beginners Valley school a very warm person. She is not a trained special educator, but she has deep understanding of psyche of children with special needs particularly in a school set up. Unlike, the 'big' schools, she didn't judge our child in what she was capable off as a pre-schooler, instead welcomed Avani to the set up and reassured us with a 'let's try' message.

Since October 2014, we are going to a play school four times a week while therapies continue alongside. I sometimes feel, am demanding too much from my little one. But it is also true, that she only has these initial few years that we can make the most of. I want the best for my child in every sense of the word and I just want her to know that she is not alone in the fight. Mummy is with her, every step of the way.

Life's been a mind boggling roller coaster the last few years. Avani is a lot better from where we started. There have been many ups and downs. Some days I felt wow! (like when she started talking somewhere by August, can count 1-10 in her own accent by now, can say mummy I Love You), some other days it was pure frustration (when she would still not respond to her name seven out of ten times, would run aimlessly, give me hard time in family functions), sometimes sadness (seeing electrodes pasted on her head during an EEG, or hearing her cries for a blood sample).

But all in all, I would rate 2014 as a year in which we covered a lot of ground and lost little.

The goals once again are set for the coming year. Avani's hyperactivity remains our biggest concern, her speech is still very minimal and then there are a  few behaviour issues as well. She needs to be ready for the 'big' schools this year at least. Wish us luck and like I always say please pray for my baby.

Happy New Year!

Socialisation or torture?

SUNDAY PICNIC
 
When a friend suggested that all of us should get together for some old style picnic with family and kids, the first thing that came to my mind was that it will be a fantastic exposure for Avani. I agreed instantly. Luckily, Yappy was back in town on the chosen Sunday and there was no reason why I should deny this opportunity.

So despite a strong breeze on a cold Sunday morning, we headed towards Lodhi Garden with 'socialisation' on our agenda. The three of us reached sharp on time with none of the other families even anywhere close to the venue. We reached at least an hour before others joined. I thought it's good in a way, as it will give us time to adjust Avu to the limitless surroundings of a public park.

As soon as we spotted a place to lay down our mat...Avani was allowed to roam around and explore. My biggest worry was that she will be running aimlessly and not listen to commands. But it turned out that there's another issue. The issue of not knowing what's ours and what's not. Just like us, there were many other families out on a picnic. Avani spotted a family that was busy munching on some bread and snacks...went straight to their camp and tried grabbing the bread! Wooh!!! Thankfully, Yappy is better at running as of now...he grabbed her before she could grab the bread and brought her back to our mat.

But we clearly had a situation at hand and about an hour to kill before our friends turned up! Avani is clearly not the one to give up easily. She tried and cried over the attractive food in others' camps. Things were not looking good for us.

We took Avu for a walk around the park. At one point, she managed to grab a piece of a school boy's roti from his tiffin. We thought she might be hungry and gave her food from 'our' stock. Obviously, this was not going to help. We spotted a place that didn't have too many people around and decided to base ourselves there. Avu started to explore again. No issues till more families started coming. Our friends joined us too in the mean time. We opened our food and snacks, I tried bribing Avani with some apple juice so that she sits in one place. The trick didn't work for very long.

While the kids of our friends were busy playing around football and cricket, my child was not even interested in looking at them. We tried to involve her in a bit of catch and throw but sorry, no interest. She spotted a cycle in another camp and would insist on standing on it. The task of controlling and explaining was getting a little too much. I picked up Avu and stood at a distance watching other kids. The feeling of 'why me' once again overwhelmed me. I gathered myself, told Yappy, we've tried enough and its better to make a move. Left Lodhi Garden within two hours that felt like an eternity!

BIRTHDAY PARTY

Just like Avu, I am also not the one to give up easily. We had a birthday party invite in evening. This was another opportunity to 'socialise'. Again I took up the challenge. But the best part is, this was a birthday party of another autistic child. At least we were not expecting anyone to judge our child for her behaviour here. And guess what! Surprise!

Avani is absolutely fine. We spot a table with wall on one side. She stands on her chair all through and happily licks on some tomato sauce, while we chat with another set of parents and finish our dinner. A good hour and a half of outing later, Avani wanted to explore McDonalds, but it was time to wrap up the party too. We happily marched back home and this time a lot relieved.

But no matter how tortured we feel as parents from these outings, there is absolutely no other way to understand our child's current standing. Unless we expose Avani to such situations, how are we going to know what are the problems? So now the task is set for coming days. My priority is to teach her how to respect what is others' and be satisfied with what is ours'. Any suggestions/advice/tricks/therapies are always welcome.

Avani surprises mommy!

As promised, first an update on Avani's birthday. I could do all of what I had promised myself in those 24 hours. My office, birthday celebration in Avu's school, a visit to children's park at India Gate, birthday party at home, live telecast on skype for husband and even little vodka post dinner. Obviously the last one was not planned :).

Avani was a fantastic baby all day! No tantrums, no behaviour issues. She was splendid in school. When I went, she was sitting with her classmates. She saw me and came out and we arranged her cake. She blew out all four candles in one go, enjoyed the birthday song and loved the cake (but of course!). I was amazed at how beautifully my child has settled in school discipline. She sat on her chair with her plate, finished her cake and distributed gifts. The little boy who was complaining about her last time, even came to the door this time to say bye to Avu!

When we went to Children's Park post lunch, Avu surprised me yet again! She was obviously running around and exploring rides but my girl would immediately respond to my call! Avani's listening skills have improved a lot over the past couple of months. She is responding much better and following instructions at least 7 out of ten times. Its incredible, trust me! I didn't have to make an extra effort to not shout at her on her birthday because I didn't need to!

At home in evening, as soon as the cake was put on table Avani knew she is going to be invited for candle blowing and cake cutting. She loved the attention. My baby enjoyed every moment.

I did cheat a little though. When coke was served, she was given too but her cup was seventy percent diluted with water. Cake was served and guests were advised to finish before she finished hers. I didn't bring home any chocolates, candies or sweets. Cake was our only dessert.

There are a lot of positives that I can gather from her birthday. From three to four years of age, Avani has gone through hundreds of hours of therapy, controlled diet, constant attention, a variety of medicines and what not. Each and every day my baby does lot more than what a 'typical' four year old would do.

I am deeply touched and overwhelmed by the kind of response this blog is getting. At first, I was skeptical that my writing might be seen as an attempt to gain sympathy. But am sure, those of you who know me would vouch that sympathy is the last word on my mind. I am a fighter and so is my daughter. With the help of your prayers and blessings, we are going to work even harder to fight autism. It is not a disease, it is just a different way of growing and living. We are not sure if we can kick autism out of our lives, but at the least we will do our best to make it a part of our life without affecting any other area of so called 'normalcy'. I do feel the impact of the love, prayers and blessings that Avu is getting through this blog. Most of you have not even seen Avani but still you are wishing the best for my child. Thank you is perhaps not enough to summarise what I feel.

Next week, we pick up Avu's journey through this enigma called autism from where we left.

It's my baby's birthday!

As Avani turns four today, am not sure if I should write about the 'unusual' aspects of my baby's birthday or should I just present the birthday picture of a four year old.

Like any mother its an emotional and proud day. But I need to stay upbeat despite the fact that my child doesn't even know the meaning of birthday...

Typically, on her fourth birthday, Avani should be excited...perhaps even counting down to the big day! She should be asking for new clothes, shoes, hair clips...suggesting friends who should be invited for the party and most definitely Avani should have at least asked for a birthday gift.

But none of that happened. Avani is not even aware that it's her birthday today.

Nevertheless, am going to dress her up for school and cut a cake there with her school friends.

Even small children notice that there is something 'different' about her. The other day when I went to pick her up from school...I was made to hear a long list of complaints...'Ye baat nahi sunti', 'Ye humare saath nahi khelti', 'Ye desk pe chad jati hai' etc etc.. I took it all with a smile and tried to reason out Avani's behaviour with them. I think I even managed to convince them to still try and make friends with Avu because whenever I go these little toddlers do their best to help her. One little boy gets her water bottle, a little girls gets Avu's shoes if she doesn't understand herself. And now Avani's birthday is another opportunity to make friends.

For the past ten days Avani is made to practice candle blowing on clay placed like cake by her OT bhaiyya at home. She has learned to blow all four candles together! We sing the birthday song as soon as she does that and today is the day to test.

So the plan is to cut a cake in school. Take a nap in the afternoon, go to Children's Park, where she can run and take rides and enjoy her day. No therapies today, we are going to give her CFGF and sugar free diet a break too. Cut a cake at home in evening with close friends and family. Yappy is out on a tour so no grand party plans and we'll miss him. Just hoping that Avu gets the message that its her special day when she will be treated like a princess and showered with lots of love and blessings.

Will update you in my next post on how it went...fingers crossed!