Dhruv, Communication, A Javed Ali Concert And A Few Lessons In Patience

Last week Dhruv very casually mentioned that he wants to go to Phoenix Market City on Saturday. Since he sounded very definite I asked him why ? Pat came the answer, ”I want to go for the Javed Ali concert 😊”

So we booked the tickets and turned up on Saturday at the venue. The concert was to start at 6, we were let in at 7 and till 8.30 it was just adverts by the sponsors and some fashion show. Finally at 8.30 Javed Ali came on the stage and what followed was 2 hours of music magic before he finally wound up at 10.30. We then proceeded to have dinner.

So what was so great about the evening ? Dhruv heard about the concert on radio and from all that he heard on radio, he was able to pull out the most valuable information that there was a Javed Ali concert happening and secondly he was able to communicate his desire to watch the concert which in itself were two huge milestones ! The concert itself was amazing with lots of music, josh and Dhruv thoroughly enjoyed himself, happily singing along with all the songs.

More importantly it was a lesson in patience and while I was losing my cool waiting for the concert to begun, Dhruv did not lose his patience even once but sat quietly waiting. His dinner too got delayed yet he did not crib. That was yet another huge milestone as its not easy to wait yet he did it better than us ! I felt happy he is growing up to be one mature patient soul.

Here’s to more such concerts, have a great week ahead folks 🙂

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A Roadtrip and some learnings

Today is 2 years since I started this blog and I decided to share some experiences of mine on a roadtrip. About 6 months back in October we decided to take a road trip and travel from Bangalore to Kasauli yup you read that right a distance of 5000 kms ! Gopan’s course was having their 30 years reunion at Kasauli and we thought well why not ? Ok I will admit Gopan was super confident of us handling this well but I had quite a few worries which we talked and worked out. Don’t get me wrong, we all love travelling and have done innumerable road trips but just not so much in one shot.

We prepared Dhruv well and set off. Given the covid scenario we were adequately masked, sanitized and followed covid appropriate behavior all the time. Apart from Kasauli we stopped at a few places and did some sight seeing including Delhi and Gwalior. We met lots of friends and some bit of family as well.

Travel is an amazing way to learn about the ways of the world and we had a lovely time doing some banter, listening to music in the car and watching the world go by. I also realized how lucky we city types are when we travelled through remote villages where there was not even a chai ki tapri for like hours together forget a restaurant. So the ladies in those villages had no option but to cook 365 days a year whether they liked it or not…made me feel grateful we have options.  

Sharing some of my learnings

  1. Dhruv’s socialization skills improved drastically and he was elated to meet people and totally at ease enjoying the parties hosted at the reunion and meeting new uncles and aunties.
  2. His life skills improved as well, previously eating out meant I had to feed him now he insisted on eating independently or “apne aap” as he termed it !   
  3. At restaurants he even started going to the washrooms alone under our watchful eyes from afar, more independence coming in.
  4. For a child who loves routines he became extremely flexible and adapted very well to the challenges one sometimes faces with road travel. We passed through many Indian states, some  had a lot of eating joints while some had nothing for hours on end so there was no set time to eat lunch unlike home where he has a fixed schedule.
  5. As we are doing homeschooling with him we would stop to show him nature and I think one of the best sights we saw was windmills dotted all over in a couple of states and corn on the road.
  6.  Inspite of his love for routines and peckiness for food he managed well. In South we gave him curd rice or dosas and in the north he enjoyed dal rotis or his favorite paneer depending on what was available.
  7. We travelled for 17 days before we came home and this boy of mine did not get overwhelmed with new places, people or situations and was truly enjoying himself singing songs and laughing…a reminder to myself we need to travel much more and meet more folks.  
  8. The only unpleasant experience came while we were in a restaurant in Gwalior and this lady kept staring rudely at Dhruv as he was stimming, flapping his hands and singing, I stared right back at her but didn’t stop my son from enjoying himself…I realized one cannot change the world and there will always be some people who stare because he is different and expresses his happiness differently.
  9. The most amazing learning came from Dhruv himself who told us that he doesn’t want to travel by aeroplane or train again only by road and he is waiting to do another road schooling trip again 😋

Disclaimer: The views expressed are my personal thoughts and are not meant to offend anyone’s beliefs and sensibilities.

Autism Awareness And Inclusion

Two days back we went to get Dhruv vaccinated as vaccination has started for children in the age group 12-15. We went to a government centre as private hospitals are yet to begin vaccinating the above age group.

We had carried all the documents and when the doctor learned he was differently abled with Autism he refused. We were a bit shocked so he told us it’s better we take him to a hospital as he was scared in case something happened to the child, then he looked at Dhruv and said he’s too thin also.

I panicked but Gopan kept his cool and told him we are not going anywhere and we want our child to get vaccinated and as the father of the child he would be responsible if anything happened.

Poor Dhruv was anyways petrified of the injection in spite of being prepared and after lots of tears we somehow convinced the child and got him vaccinated.

We came home and it struck me a basic right of my child like protecting him against a lethal virus like Covid was denied in a government set up just because the doctor had no clue what his disability meant.

A much more meeker family than us may have cowed down and left without getting the vaccination.

Sometimes I wonder how much do we keep fighting for basic rights for our kids ? I hope healthcare professionals are trained to understand having a disability doesn’t mean they are aliens ! They are people like you and I and deserve respect and to be treated with dignity. Its high time the medical fraternity includes a curriculum for its future doctors about the different kinds of disabilities and some sensitivity training too !

Disclaimer: The views expressed are my personal thoughts and are not meant to offend anyone’s beliefs and sensibilities.

To Blog About Autism Or Not

I have been blogging about my son and our journey with Autism for a while now. Unlike what many believe the intention is not to make money, take undue advantage of his autism, become famous on social media or even be an object of sympathy, pity or be put on a pedestal for raising a special child.

I blog to help parents and raise awareness in society about Autism. Reading blogs by other parents has helped me much more than advice from professionals coz just knowing there are kindred souls out there who are going through the same turmoil as me helps. Many a time someone else’s journey has helped me.

My family and close friends have told me on innumerable occasions they understand my son and his challenges better after reading my posts.

Personally I try to share the little victories which come easily to a normal child but which comes with so much of a struggle to a child with autism and dyspraxia. It is also to give hope and a silver lining to other parents.

I think of a world where no parent ever blogs or writes books about their kids and their autism coz well you are infringing on the child’s privacy, the internet is filled with predators and a zillion other reasons.

In that case we would never know what all our children can do. So called ‘normal’ people would only continue with their misconceptions about Autism and they would never see the courage these kids possess.

They would only assume they have disabilities and never ever see them beyond that label.

Other special need parents would never have something to fall back on in their days of despair.

Autism has made me a better person and I am super proud of my son for all that he is teaching me about life. He knows I have an autism blog and in fact I took his permission before starting it,not sure how much he understands but as a parent it is my responsibility to protect his interests and I do so by blogging sensitively.

There are days when I feel I should stop blogging and then I get a message like this from a parent which makes me go on and feel somewhere I am making a tiny difference through my writings…

Disclaimer:- This is a personal blog and the views expressed are my personal thoughts and are not meant to offend anyone’s beliefs and sensibilities.

 

Life Lessons From My Son

Being an adult does not always mean you are in control of your emotions –  there are good days and bad. Life teaches us that we have to make the best of what is with us!! Autism is not easy. There are times I look at my son and think, if I am struggling as a neurotypical adult, how much more would he be struggling trying to understand whatever is happening around? Yet, like a Zen master he handles it pretty well on a daily basis.

  1. He wakes up with a smile – No matter how good or bad the previous day has been, Dhruv always wakes up with a smile which in turn is pretty infectious thus setting the tone for a pleasant day.
  2. He never holds grudges – I could have scolded or yelled at him for doing something. Previously while he used to cry, these days in a mature manner he says, “Amma don’t shout at Dhruv !” He doesn’t sulk or hold a grudge because of the yelling.
  3. He lives in the moment – He cannot hide his emotions. So, if he is really enjoying something or finds a situation funny, he laughs out aloud. He is happy singing silly songs and being in the moment, unlike me worrying about the future.
  4. He is transparent and cannot lie – He is brutally honest so if he does not like something or someone he makes it very evident. Many a time, we try to be politically correct just to avoid hurting someone’s sentiments, so it must be so liberating for him to be himself and say exactly what is on his mind.
  5. He is by nature a content soul – I am a born shopaholic!!! So, I find it amazing my inherent greed has not trickled down to him, he seems content with what he has! While I go gaga in a toy store/ book store he seems happy just absorbing the sounds and sights.
  6. His passion for music – He sees music everywhere and hence is perhaps never lonely! There are times we communicate through songs. If it is a Hindi song, he most often knows the history behind the song right from the name of the movie, year of release, music director and singers.
  7. He keeps trying despite his many challenges – Apart from Autism, Dhruv has Dyspraxia which makes anything involving motor coordination challenging.(Activities such as brushing, spitting, having a bath, writing and many more which we take for granted are tough for him). Yet, he is there, trying everyday and does not give up even when he fails.

These are a few life lessons from my little Zen master.  Who do you think inspires you?

Disclaimer: The views expressed are my personal thoughts and are not meant to offend anyone’s beliefs and sensibilities.

What I learned From Professor Tony Attwood

I have not blogged for a while now but today it has been 5 years since I came out in the open about Dhruv’s Autism. It started with me writing an article for Children First ( Dhruv’s therapy centre ) after attending the Tony Attwood workshop. This started my journey of sharing our experiences on living with Autism. I am sharing the article as I wrote it then but if I were to write it now, it would be a different article simply because I have learnt so much these last 5 years. I honestly did not anticipate the kind of challenges and struggles my son would actually have to go through.

Today I don’t believe in levels of Autism like high functioning or low functioning as they either set too high expectations completely ignoring the child’s challenges or they set very low expectations completely ignoring the possibilities of the child having any kind of abilities, both do a huge disservice to children with Autism.  

What I learnt from Professor Tony Attwood

Jan 2016,my six year old was diagnosed with Asperger’s Syndrome & Sensory Processing Disorder. I remember sitting in Dr Amit Sen’s office, hearing the diagnosis and blurting out, ‘‘That is Jerry from “Boston Legal”(the character of a brilliant lawyer from a popular television series who is considered odd due to his quirks.) I had some reference point to Asperger’s Syndrome!

Our son had been in therapy for one and a half years prior to the diagnosis with a vague assessment of mild autism and SPD. We had been told to wait till he turned 6 to get a more formal assessment. After the initial shock, a wave of relief washed over me as we now knew what we were dealing with. Of course there was a lot of pain and heartbreak too but my spouse and I decided no diagnosis was going to change our love for our son. Once acceptance had set in not only by us but also by our families, we started looking at a future course of action. We started intensive therapy at “Children First” and also notified his school on how they could work with him. Being an avid reader since childhood, I turned to books for knowledge, solace and comfort. One of the earliest books I picked up after the diagnosis was ‘The complete Guide to Asperger’s Syndrome” by Professor Tony Attwood.

Feeling like Alice in Wonderland, I started reading more books and attending workshops. I started bonding more with therapists to understand this new universe that was suddenly a part of our lives. It was all new, scary and interesting too and many a time the thought came to me if it seems terrifying to me, imagine his plight!

I came to know Professor Tony Attwood would be in Delhi for two days conducting a workshop and I knew I just had to attend. What were the chances the world’s leading expert on Asperger’s Syndrome decides to come to India for the first time…right after we got a diagnosis for the same! It seemed like destiny ! Attending the workshop and meeting Professor Attwood was an amazing experience. Knowledgeable with an amazing sense of humour, he was like a beacon of hope for all of us present there. Being a parent himself (his son has Asperger’s Syndrome) it also meant he was sharing practical experiences ,living with it. I was fortunate to interact with other parents and also met some adults with Asperger’s Syndrome. I have tried to share some of it though I have only touched the tip of the iceberg.

What I learnt from Prof Tony Attwood

·  Asperger’s Syndrome is another name for high functioning autism. Autism is a different way of thinking, learning and relating. They have found something more important than socialising and they are a minority in a world of social zealots .It is a difference in ability and not a disability, a difference in culture (How positive does that sound!)

·  The contradiction in their behaviour and abilities is really confusing. How can the child play music brilliantly and yet not be able to brush his teeth? How can the child read at three and learn to spit only by seven!

·  Known as Aspies, they have been around for a long time and now many adults are getting diagnosed with Asperger’s Syndrome. They feature in a lot of books, movies and popular literature as well. Think Sherlock Holmes, Hermione Granger & Sheldon Cooper

·  Unlike classical autism they get diagnosed only after they start school,boys in primary school and girls even later.

·  As kids they want to make friends but they may have different interests from their peer group. A regular child wants to discuss cartoons while the aspie wants to talk weather! So he goes to adults for information and soon starts talking like an adult!

·  It is difficult for them to make friends as they cannot pick up social cues, get overwhelmed by facial expressions and look away to process & think.

·  This is also the reason why they find it difficult to work in groups as they don’t get group dynamics or cues.

·  They are intelligent and good at academics though sometimes it may not be obvious as they take time to process and do not fare well in exams.

·  Most aspies use so much mental energy at school reading a book, the teachers’ face, managing emotions and just keeping it all together that at home they may explode on the slightest pretext. Anxiety is part and parcel of being an aspie. They are totally unaware when a meltdown is imminent.

·  They cannot handle more than half an hour of homework. Handwriting maybe difficult for them so many schools use computers and I-pads.

·  As he becomes a teenager, the peer group comes into play. They want him for his knowledge and not his personality. They want his help with their math homework but find him a little odd and tease/bully him thus making him feel lonely and isolated. Some kids become depressed and some escape into a world of imagination and end up writing books.

·  For teenagers in high school friendship is like a bucket which energises them while for the aspie it is like a cup and they need to empty that cup to energise. Socialising tires them and they need time to themselves to recharge. They don’t socialise as much as regular teenagers and sometimes they don’t have any friends at all.

·  There are books to help them with everything including bullying, job interviews, dating and relationships. Yes, they do get educated, get jobs, find love and lead fulfilling lives

·  An aspie can be whatever he decides to be and they are in every profession especially at the Universities – Prof Attwood

·  Today there is more awareness, better facilities and support so my biggest takeaway from the workshop was the feeling of Hope with a capital H ! As a parent I celebrate my son daily as he has taught me so much and I am proud to be an aspie mom !

Disclaimer: The views expressed are my personal thoughts and are not meant to offend anyone’s beliefs and sensibilities.

Image taken from the internet

Some AHA Moments And Dhruv

So I am blogging after a while and sharing a few AHA moments that I noticed about Dhruv over the last few months which made me feel pretty happy.

1) Empathy– He was always empathetic and now it’s increasing ! If I am unwell, he asks me if I am ok, have I spoken to my doctor or taken medicines ?

When Gopan’s mom had a fall, he asked her,” Muthashi are you in pain ?”

If he sees me looking sad, he promptly says,” Amma don’t be sad, pls be happy 😊 ”

2) Connected– One of the issues kids with Autism face is being connected to people. Dhruv connects beautifully to Gopan and I. He does live in his world but it’s easy to get him to cross over to our world, one call and he wants to know what we want. At times he and I sing silly songs together, laugh or he does masti with Gopan and he is totally involved in it.

3) Motivated – He is super motivated to do things,be it studies or yoga or music practice ! In fact during his study time he ensures my wi fi is switched off and will tell me.”Amma now let’s study !”

4) Socialisation – He loves doing phone calls and video calls with family and will start rattling off everything happening in his life now! Definitely one of the most social kids in front of family while he doesn’t share as much when it’s just me and him.

5) Language – While he still doesn’t talk in full sentences at home unless we compel him, he is picking up Malayalam beautifully and converses so well with my in laws or my aunt.

6) Generalisation – Many kids with autism have this issue that they can’t apply what they learn to the general environment. The other day it rained a lot and we were stepping out to go for a walk, he promptly asked me “Amma umbrella ?” So he is thinking and using logic to figure the environment.

7) Eye contact – Many kids with Autism struggle with eye contact. Dhruv has shared on multiple occasions it is difficult for him to ‘look with your eyes’ ( his exact words ) though he does make eye contact most of the time.

8 ) Stims – Stims are repetitive movements or sounds made by children with Autism. He loves to flap his hands and jump especially when super excited. He shared he does this when he is happy.

9) Challenges – Many things are still challenging for him but the good thing is he is opening up and saying, “Amma/Achan pls help !”

Looking at him I see a child who is enjoying and having fun inspite of his challenges

I shared this so that parents who are struggling with kids with Autism know that our kids do improve with patience and over time.

Have a great week ahead folks 😎

Disclaimer: The views expressed are my personal thoughts and are not meant to offend anyone’s beliefs and sensibilities.

Dhruvisms : Hope in times of the Pandemic

We are living in dangerous times. People are losing friends and family to the virus which seems to have mutated into stronger strains. Who would have thought a virus would bring the world to its knees and wipe out millions of lives. Masks have become an integral part of our attire akin to wearing shoes when we go out. Corona like a modern day Thanos ( the villain from the Avengers series ) seems hell bent on ruthlessly wiping out the human race !

The uncertainty of it started getting to me and I thought of some interesting moments with Dhruv over the last 2 years which made me smile. Sometimes, hope can be found in the laughter and innocent chatter of a young boy. These are super precious to me as the boy doesn’t really share his thoughts too easily, hope you enjoy them.

Some Dhruvisms 🙂

## We had moved from Delhi to Bangalore and Dhruv had just joined a new school. His teacher looked at his surname and asked him if he was a Malayali. He promptly replied,” No, I am a Hindiyali !” ( And we have a new word to add to the dictionary ! This is what happens when a Malayali spends 5 years in Delhi, no wonder the child assumed we are errr Hindiyalis 😎 )

## Once he was asked by his Special Educator what was his dad’s name and he promptly said,” T.P.Gopan.” So she asked him if he knew what T.P stood for ? Without batting an eyelid he said,” Tiger Pisharody Gopan ”  (I did not get any such interesting name, it was reserved only for the dad !)

## I was reading ‘Goldilocks and the Three Bears’ as a bedtime story to Dhruv. I asked him who came to the house of the three bears ? He replied,” Corona Virus !” And that’s how you give fairy tales a modern twist 😊

## Me sitting with Dhruv all set to teach him while humming a song.

Dhruv, ”Now focus on brain gym !”

We start doing this game called ‘Word Wheel’ where he has to make words. He realized the mom still isn’t focused enough, looks at me and says,” Can Amma study ?“

Wondering who is the student & who the teacher 😎

## Dhruv make a sentence with Autism. Promptly he goes,” Amma has an Autism blog.” ( Yes he knows about the blog and before starting it I explained I would be writing about him and asked if he is ok with it.)

## And the latest on Covid

“We can’t go out because of Covid.

We watch news on NDTV 24*7

I wear a mask before going out.

Government is telling…( didn’t know what else to say!! )

Maya Sharma is in Bangalore ( The NDTV journalist who reports from Bangalore )

We have to wash our hands.

You have to spray sanitiser

Narendra Modi is telling.( Again doesn’t know what to say!!)

## And his favorite these days,” Amma don’t discuss Dhruv !!”

Stay safe folks !

Disclaimer: The views expressed are my personal thoughts and are not meant to offend anyone’s beliefs and sensibilities.

The boy with “Tiger ” 😎

And the blog turns one :)

It has been a year since I started blogging.While I had been writing on social media about Autism for a while now,this blog was created to gather all my thoughts and writings in one place and share my experiences with my son Dhruv in the hope it helps others too.

The messages and comments that keep coming in makes me feel grateful that people are reading and somewhere it is making a difference.

So a big thank you to everyone who has been reading my blog.If you are a regular reader keep reading my posts and if you are a new reader do start reading them 🙂

“There are moments which mark your life,moments when you realise nothing will ever be the same and time is divided into two parts : before this and after this.” Author unknown

I read this post sometime back.I am not sure who the author is,but I know it is a quote all Autism parents will instantly relate to…

Sharing the link to the first ever post of this blog

Autism Spectrum Disorder

Autism And What Works

Today is World Autism Awareness Day and I am sharing an article I wrote for my son’s therapy centre “Children First” many years back.

When my son was four and a half, he was assessed with Sensory Processing Disorder. The psychiatrist asked us to wait a while before going in for a diagnosis. It took another year and a half to get a formal diagnosis of Asperger’s Syndrome ( now it comes under the umbrella of Autism). For about a year leading up to the assessment, my spouse and I met about four or five doctors to figure out what was wrong with our child. He had speech delay & echolalia but we were assured speech delay affects even normal children & there was no cause for concern.

Why did it take so long to get an assessment ? We were blinded by his exceptional abilities in reading and music and hence the fact that he was not developing as well in other areas was overlooked. The signs were there but we missed reading them and so did our doctors. How could that happen? The reason is simple. Autism awareness is practically non-existent in our country and regular paediatricians are not trained to detect early signs of autism. If the child has eye contact and is friendly they rule it out, as simple as that! This is exactly what happened in our child’s case. The gut feeling that something was amiss with our child persisted and ultimately it led us to a Child Guidance Centre and assessment. 

What Worked For Us :

Early Intervention And Therapy

Once we got an assessment , we started off with regular and sustained therapy on a war footing. If you are a parent, watch out for milestones and if there is a delay, consult a specialist instead of procrastinating. If your child has delayed speech, take it as a red flag and meet a clinical psychologist. The earlier you detect autism and start early intervention, the better your chances of managing it. Therapy works wonders and we have seen amazing progress with our child. It is also important to have faith in the therapists and build a relationship with them.

Acceptance

As parents we all want perfect children but if there indeed is an issue and you get a diagnosis of autism, accept it. Acceptance is half the battle won as it means acceptance of your child along with his/her autism. It is sad but I have seen many parents in denial and even refuse the child the required intervention. Children are very good at picking up vibes & if you have not accepted them, they sense it and progress in therapy becomes that much more difficult.  

Support

Autism is a lifelong condition with no cure currently available. However, with the right intervention it can be managed well and many people go on to lead productive and fulfilling lives. As the autistic brain is wired differently it presents its own set of challenges on a daily basis and there are good days and bad days. Hence it becomes all the more important that you have some sort of support be it friends or family, ideally both. It also goes without saying that it is very important that spouses support each other and be equally involved in the child’s life.

Schooling

Schooling is an important aspect of every child’s life and you need to figure out the best way of educating your child as every child is different. It is important to be transparent with the school about the child’s condition and interact with them on a regular basis. A recommendation letter with some pointers on how to handle the child goes a long way in making the teacher and the child comfortable with one another. Maintain open channels of communication and build a rapport with your child’s teachers and special educators so that they connect with you and your child.  

Society & Stigma

In India any kind of disability is considered a stigma and hence many families hide the fact that their children have ASD and are undergoing therapy. This can only change when parents start opening up and educating people that autism is not a disease. Some of the most brilliant personalities in the History of mankind were rumoured to be autistic including Albert Einstein, Isaac Newton and Amadeus Mozart. Remember people who care will always support you.   

Enrich Yourself

Once you know about your child’s condition, try to learn as much possible about it. Talk to your child’s doctors, therapists and teachers. Attend workshops, read books and articles so you know how to tackle it to the best of your ability. Autism is not your enemy and the abilities you see in your child are partly due to autism. Accept the fact that autism and your child are inseparable and embrace this reality.

Exposure

The more exposure you give, the better the processing develops in the child. We try to give our child as many different experiences as possible & pluck him out of his comfort zone. We go for movies, use public transport, do road trips, socialise and try to lead as regular a life as any other family. This has helped us considerably in increasing our son’s flexibility.   

Rest And Recharge

It is crucial that you take time out on a daily basis to recharge your batteries as living with Autism is extremely exhausting and tiring. Do what makes you happy and never for a moment feel guilty, after all you are doing your best for your child and you can do that only if you are well rested .Listen to some music, read a book or watch a romantic comedy. 

Celebrate your child

Maintain a daily record and try to look at the positive aspects even if it has been a bad day. Every little step our child takes forward is a cause for celebration for us. We try to give him a lot of laughter & love. I have seen parents get so bogged down by autism that they forget the child. All kids, autistic or otherwise have a right to a happy childhood so enjoy your child & make happy memories.

Disclaimer: The views expressed are my personal thoughts and are not meant to offend anyone’s beliefs and sensibilities.