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!

Denial and the home remedies - none worked

Denial is perhaps the first emotion that every parent who's child has ever been detected on ASD goes through.

Ditto for us.

We never went back to Dr Jyoti Bhatia. We thought she was too blunt, rather brutal. How could she judge our child in merely an hour? The label of being autistic can be life-long, we thought our child is too young to be labelled autistic. May be she is just a little delayed in a few areas. Otherwise all is well.

How can you recommend hearing test for a child who comes running in front of TV, the minute she hears her favourite song? How can you say that the child is slipping in her own world just coz she likes to play with bottles more than soft toys? How can you say that the child's social behaviour is not appropriate when she smiles often and hugs. These were some of the many puzzling thoughts in our mind as we drove back home, not talking to each other for most of the drive.

No one cried, no one pacified, we were not hysterical, we were not thinking ahead of time (at least not yet)...but we were very irritated and nervous.

We decided that there might be a few problems but we can't jump to a conclusion so soon. We came home. Spoke to family and friends. From close relatives to pure strangers - this was the time to talk to anyone and everyone. I just wanted someone to tell me firmly that Avani has no autism. She is fine and will be talking soon. Elders in the family would say that there is absolutely no problem. Some children speak as late as five years...you are unnecessarily getting worried.

Soothing words did come my way and so did some 'home remedies'. Give almonds daily, chidiya ka jhoota pani pilao, Kauvve ki jhooti roti khilao, badd ke patte pe khana khilao, nazar utarwao, sheetla mata mandir me chandi ki jeebh chadhao, astrologer se milo, play school me daal do etc etc...

I must admit - we did all of it.

Yes, even kauvve ki jhooti roti!!! (Don't ask me how) I guess rationality goes for a toss when it comes to your child. Any parent reading this blog would agree that you don't want to take any risk. You can't take a chance and annoy any God/Goddess. What's the harm if we just visit a few temples or do some charity. No harm in visiting an astrologer and performing a pooja. We did that. Even now Avani wears a green stone around her neck. Can't say if its doing any good but I like to believe that it is.

Anyway, when your first child is suspected to be on the spectrum, you don't really know what exactly to compare with other children. Whenever I compared Avani with other girls of her age, I was told that may be they are talking because they have elder brother/sister in the house, or they have single language environment, or the mother spends more time with the kid (as I had started working by now), or the standard answer - every child develops differently.

Yappy thought Avu is too arrogant to respond to her name because otherwise she can hear and respond to all the songs on 9XM all day! The fact that she was running around so much is because she is a genuinely naughty and active child. We knew that there is something a miss but we were trying to reason out the issues by labeling a lot of them as age appropriate.

Autism was an unknown territory. Until my child was suspected on the spectrum, I had no idea as to what exactly is autism? Why it happens? What's the cure? What should we do?
There is no one on either side of the family on Autism spectrum with whom we could compare our kid (at least we don't know of anyone).

We decided we will give Avani a few more months to pick up language and if even on her second birthday she is not talking, we will do 'something'. A decision that I regret now and I wish I could have started ASAP. But you can't change what has happened.