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

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.

 And I am back 🙂 Its been a while since I blogged as we were going through a lot of transitions in our lives. This is a post I wrote long time back but had not shared on this blog and thought it may benefit some parents hence sharing.

When Dhruv was little, he started getting fascinated with alphabets and numbers. He would pore over books looking at the images and words. By the age of 3 he was reading and by the age of 4 he was making words with his magnetic alphabets. I remember Gopan and me being stunned and so proud of him. He would be assessed with autism only by 6 but we already knew our child was “different”.

There is a lot written about Autism but very little about Hyperlexia. In simple terms Hyperlexia is a syndrome where a child could be fascinated with numbers or alphabets and has a reading ability far ahead of his peers and age. They also have difficulty in understanding and using language and many a time it is accompanied by Echolalia ( repeating others’ words and sentences ) which was the case with Dhruv. It is normally not a stand alone condition and is accompanied by some other disorders. In the case of Dhruv along with Hyperlexia, he has Autism Spectrum Disorder and Developmental Coordination Disorder or Dyspraxia.

The child starts reading by himself without being taught but struggles with comprehension. This makes life tough for him especially in school as teachers would think if he is reading beyond his age he must be comprehending as well. Even today Dhruv struggles with comprehension though he can read anything from stories to billboards with ease. Many a time when we meet someone new I introduce them by name saying this is an aunty or uncle and he manages to zap us by spelling their names at that instant and most of the time he gets it correct !  

Dhruv’s sense of phonics and auditory memory is very strong so I don’t have to teach him spellings, when he hears a word he instinctively knows how to spell it. He struggles with writing due to his Dyspraxia but used to love studying for spellbee with me for his earlier school by practising writing as he probably felt a sense of achievement by writing correct spellings and earning praise on a job well done. At times if he is not sure of a word he asks,’ What is the spelling?” and if he gets it wrong he knows it is wrong and will promptly tell me, “Mistake ,I want to erase it.”  

Over the last one year home schooling Dhruv I have managed to work quite a bit on his comprehension by working on one sentence stories then increasing the scope to two sentence stories etc. Wh questions used to throw him in a tizzy and if you think about it, our social conversations revolve around wh questions…where did you go, whom did you meet, what did you do etc. So imagine how lost you would feel if you cant fathom any of this plus you have Autism and anyways find it difficult to navigate this world ! Nowadays when he hears a new word he wants to know what does it mean or in his words “means”?( He makes a complete sentence only when he feels like, yes language is still a challenge ! ) There are times I catch him reading the sub titles while I am watching a movie 😎 I look at Dhruv and feel very proud of him that he still wakes up with a smile and tries his best though we now know how hard it must be for him !

I am sharing this photo so that you can see the handiwork of a child with Hyperlexia. Dhruv was just about four years old and wanted to create ‘telephone’ with his letters. He was in a dilemma as he had one E but needed three so he just used a bit of creativity making telephone with one E and a 6 and a 9 ! I seriously hope that apart from being awed by their abilities people are more sensitive towards people with Hyperlexia as their struggles are real. The second image is taken from the internet.

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

When we were in Delhi, we used to take Dhruv for therapy to this wonderful therapy centre called “Children First”. “Children First” hosts an annual event called “Imagine” which tries to create awareness on different social issues like mental health, disability and other related issues. Last year the theme was “Parenting With Courage” and I was asked to write a post on it, so here goes…

Parenting with courage is…

­…discovering the innate survivor and superhero in me.

…realising our lives are far richer because of Dhruv.

…understanding Autism is not the enemy, it’s part of Dhruv and working on understanding him.

…a life long journey of love, hope, courage and miracles while discovering the road less travelled.

…a family dealing with dementors on a daily basis and yet finding hope, magic and laughter in the little joys of life.

…experiencing an amazing abundance of love from a child who is handling the challenges of being ‘different.’

…creating beautiful narratives of hope, courage and love.

…dealing with dark thunderstorms and rainbows and having the courage to believe and focus on the rainbows.

…a journey of self-discovery and realising the world is indeed beautiful from a ‘different’ perspective.

…discovering a beautiful world through my child’s eyes.

…learning to live in the ‘now’ with my child and living life king size.

…learning to appreciate the wide eyed wonder in my child’s eyes and the hugs that come my way.

…learning to live with hope, anxiety, meltdowns and lots of unconditional love.

…pushing the boundaries for my child.

…making my child the most important priority of my life.

…feeling like an avenger and fighting a different ‘Thanos’ on a daily basis.

…accepting life with Autism is tough and there will be good days and bad and we will survive them all.

…heartbreak at seeing my son struggle with things I take for granted.

…having the wisdom to know when, where and how much to push my child.

…feeling a lump in my throat when I hear an ‘I love you’ from my son who struggles to communicate. 

…celebrating every little milestone of my son knowing it came with a huge amount of effort.

…feeling blessed to hear my son create some amazing music.

…feeling amazed at this little boy of mine who struggles on a daily basis yet laughs it off and tries again…true symbol of courage ! 

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

 

 

I read somewhere, change is the only thing that is constant; and yet most of us get affected by it. While some changes like a promotion, falling in love or getting married affect us positively; others like a break- up of a romantic relationship or the death of a loved one does affect us adversely.

Individuals with Autism love their routine and get affected much more by any changes to their routine as compared to the non-autistic people. As life is all about transitions and changes, it is important we teach children with Autism how to handle them. Sharing some strategies which are working for us…

1. Prepare, Prepare & prepare – Dhruv has accompanied us for lots of social get togethers; and as part of preparing him for such events, we let him know the people who would be there, known and unknown to him . As he is a child who prefers proper meals as opposed to snacks, I have, on many occasions, fed him in advance before going for social get togethers where I knew the food would mostly be snacky and not proper meals.
2. I have found that talking and writing about the change helps in preparing the child. This writing trick has been so helpful that when Dhruv gets overwhelmed he actually tells us “Amma/ Achan (Father/ Mother) will write “! It is his way of letting us know when he is overwhelmed and needs help to make sense of the chaos around. So, we break-down what is happening, into simple sentences and this helps him calm down.
3. Always Complete the Loop – When you plan to go to a Mall, prepare them with relevant information like which mall, what we intend doing once there and the approximate time of return home, so that the loop is complete in their minds. I still remember some friends dropping by unexpectedly at our home and much to our embarrassment Dhruv quipped, “They will go home after ?” Thankfully they were good sports, and we all had a hearty laugh about it 🙂
4. The time needed to prepare a child depends on how big is the transition. While any change in routine can be challenging for someone with Autism, cancelling a family outing to a favourite restaurant is a small change compared to a huge transition like moving cities, a new school and a new home and would need months or weeks of planning.   
5. It also depends on the child. Some children need to be prepared months in advance for big transitions. With Dhruv, preparing him too early meant he battled with too much anxiety ! While planning our move from Delhi to Bangalore, I only told him a month in advance, and gave him a chance to say bye to his teachers, didis and friends at school as well as his therapy centre.
6. Does it affect the child ? Some events may have a great significance for you, yet they may not really matter to your child. A beloved relative passing away may be painful for you but if your child does not yet understand the concept of death or has never met this relative, it has no significance in his life.
7. Try to break the routine once in a while to increase flexibility. Introduce the idea of “surprise” where anything can happen ! Take a break mid week or say we are trying something new and introduce a new food or a new restaurant. ( Err the restaurant idea can be tried after the pandemic 😀😀)
8. Lastly, if there is a huge transition in your life which affects the family, make sure you prepare yourselves too along with the child. Moving from Delhi to Bangalore, Gopan & I spent so much time preparing Dhruv that we forgot to prepare ourselves for the transition ! We then went through a phase where we missed Delhi like crazy while we tried to adapt to Bangalore and the transition !

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

We live in a society where any kind of disability is viewed in a negative way. There are times we speak about a person with Autism, even when he is there in the room, as if he is invisible ! They may have difficulty in comprehension and communication but they do assess your attitude from the tone of your voice.

There is a word used widely in our society in connection with disability and it is very distasteful for parents. In Malayalam it is called ‘pavam’, ‘bechara/bechari’ in Hindi and it means “you poor soul” in English, with huge amounts of pity thrown in. The speaker assumes that he is empathising with the parent by saying, it is your karma that you have a child with disability or whatever theory he feels fit to dish out !!

The funny thing is, Gopan and I have never felt we are ‘poor souls’, “burdened” with a child because of the zillion reasons suggested by people ! We just feel blessed to have Dhruv in our lives.

A child with Autism has a right to be treated with dignity. He needs to feel loved, and cherished for who he is, and not for who his parents want him to be. He is perfect being himself and doesn’t need to live up to some ridiculous standards set by society which can be taxing even for normal kids!

A few strategies to treat your child with dignity 😊

1. Treat him like a regular person – While we are aware of Dhruv’s challenges and are sensitive to it, he gets his fair share of pampering and reprimands as well! It is very important to look beyond the Autism diagnosis and respect the child as an individual in his own right.
2. Treat him like an adult – We are staying in a rented house and plan to move soon into our own house. As Dhruv is attached to this flat, he was upset on hearing we would have to move someday. Gopan gave him our rental agreement to read and though he didn’t understand the whole thing, it did sink in, this flat isn’t his and belongs to our landlady 😦
3. Make the child feel loved – Children with Autism may not be able to articulate themselves well but they are aware they are “different”. Thus it is important we make them feel accepted, loved and safe. No matter how the day has been, we end it with hugs and by telling Dhruv how much we love him.
4. Focus on the Strengths – Every child with Autism is not an Einstein or a Mozart in the making. They can however be taught vocational skills depending on their interests so that they become independent. Dhruv loves music and is pretty good at it so we are trying to build his education around it.
5. Involve the child in all major decisions – Recently, Gopan took voluntary retirement from the Indian Navy after some seriously long innings, to be a ‘stay-at-home-dad’ and be more involved with Dhruv. We started preparing Dhruv months in advance, that soon, Achan (dad) would be home all the time.
6. Give choices – It is important the child feels he has a say in matters pertaining to himself and that he is not being forced to do something. Be it an outing or choosing the clothes to wear, Dhruv gets to choose and some days he even plans trips himself or a special meal on a Sunday 😊

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

Both Gopan & I love to travel and explore places and soak in the local Culture and History. When Dhruv came along, he too got habituated to us taking off on road trips and experiencing new places and doing the touristy monument hopping. As he started growing older and communicating with us, I realised he could recognise monuments and compare something he hadn’t seen with something he had. Since we lived in Delhi for 5 years, he had seen India Gate a lot so when he saw a picture of “The Arc De Triomphe”, he promptly quipped,” It is like India Gate!”  

Now that I am doing home schooling with Dhruv, I decided to introduce him to History and the last few weeks we have been reading about different types of monuments. After reading we would do a virtual tour of the monument and if we had visited a particular monument, I would dig out our photos and show him so that it is a more personalised experience for him. A few days back after we had done a few monuments, I asked him to let me know about them and he made a list which stunned me.

Sharing his list after taking his permission 😊

Dhruv’s list :

1. Museum is C Minor ( Not sure which museum though )
2. Taj Mahal is C Sharp Minor
3. Agra Fort is D Minor
4. Red Fort is E Flat Minor
5. Wagah Border is E Minor
6. Buland Darwaza is F Minor
7. Jaisalmer Fort is F Sharp Minor
8. Fatehpur Sikri is G Minor
9. Cubbon Park is A Flat Minor
10. Lodhi Gardens is A Minor
11. Humayun’s Tomb is B Flat Minor
12. Qutub Minar is B Minor                                                                                               

He has seen all these places except Jaisalmer Fort. He gave each of those monuments and gardens/parks a musical note as their identity!  Since he breathes and sees music everywhere, he had widened that to include these old structures too 🙂  

Individuals with Autism are wired differently and hence have a different perspective. While I don’t really understand exactly how he views monuments through a musical lens, it is enough for me to know he is finding beauty in them in his own way. It was a learning experience for me to get a peek into his mind and I discovered a more fun way of looking at things and suddenly History has character and music as well 😊

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

“If they cant learn the way we teach, we teach the way they learn” – Igncaio Estrada

In our society there is a lot of pressure on children to do well in academics and in doing so, we forget there could be many other facets to a child, apart from scoring 100% in Maths!! If these are nurtured well, the child could turn into a brilliant painter, football player or musician! We may see these talents in our children, yet in our bid to ‘put square pegs in a round hole’, we sadly end up squashing their creativity. Some of them conform to their parents’ expectations, and eventually end up leading a life of mediocrity rather than realising their full potential.       

All these years, like any other parent, I too obsessed over academics; after all in spite of Autism, Dhruv was happily going to an ‘inclusive’ school. However, we could not ignore the fact that he was struggling with academics. After discussions over a fairly long period of time, Gopan and I decided to home school him from this ongoing academic year. We took this major step, as with Autism and Dyspraxia, he has multiple challenges. We also need time to work on his life skills and activities of daily living and most importantly focus on his strength Music. In Dhruv’s case, music is his ‘core’ subject being acquired through proper classes, while the rest of the teaching/ learning content comprises skills essential to survive and function in this world independently.    

I started with the idea of following the NIOS curriculum, but very soon discovered that actually unschooling was more effective instead of following a prescribed curriculum. So, I read him stories, encyclopaedias and do more of experiential teaching. If we read about trains, we watch train videos and take a virtual tour through the biggest railway station in the world, and even talk about his experiences of travelling in trains including metro trains. Now, it has become more interactive and he is indeed sharing more. To be honest, I too am enriching my GK along with Dhruv 🙂   

My take-aways on home-schooling.

1. Think carefully why you want to home-school, and go for it only if you are truly convinced that’s the best option for your child.
2. It is a big commitment, especially in terms of time. So, you and your spouse need to be on the same page, else it will not work in the long run.
3. You need to figure out, are you going to do it alone, or will there be others teaching your child? Are you and your spouse going to take turns teaching the child, or is it a one man/one woman show?
4. There is no ‘one size fits all’ rule in home-schooling. Just as each child is different, each family is different so choose what works best for you, as a family.
5. Is your focus on imparting life-skills/ vocational learning or academics? You could combine all of them or just focus on one aspect. If it is academics, which Board are you going to follow? Apart from the other boards, NIOS is a very popular option among home-schoolers, as it offers more flexibility compared to the others.
6. You also need to work out, how to integrate socialisation in the scheme of home-schooling so that your child learns to mingle with people.
7. You need to plan out each day and have a precise schedule, even if it is in your mind. This schedule should include leisure time for you as well as the child. 

After reading the above pointers if you feel convinced go ahead, home-schooling is great fun and a fabulous way of teaching your child at his pace 🙂

Click on the link below to read my earlier post on “Autism & Home-Schooling”

https://sujapisharody.home.blog/2020/10/13/autism-home-schooling/

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

Dhruv joined playschool when he was 2.5 years old and from that tender age, started going to school by the school-bus. Gopan was in a transferable job and Dhruv got used to different schools in different cities. As he was diagnosed with Autism only by the age of 6, he attended only mainstream schools ! His shy and sunny smiles, despite his challenges, made most of his teachers, peers and even the ‘ayahs’ (helpers in schools and school-buses) bond with him 😊

Going to school was something he looked forward to, and we ensured he took the school bus/van, in our bid to increase his socialisation. Leaving Delhi after 4 years in the same school was pretty emotional for all of us. His teachers spoke about their time with him and how he made a difference in their lives, some wept and some gave him gifts to remember them by !  Felt so touched that he had been lucky to experience this kind of love.

After Delhi, last year we moved to Bangalore and he got admission to an inclusive school. We expected him to go to the next class as per natural progression, but the school, after assessing, put him down by 2 classes as they felt he was not ready! Although, this was a big blow to us, we still admitted him as the school seemed sensitive. To give the school credit, they even allowed him to use an I-pad as he has writing challenges due to Dyspraxia.

As Dhruv is a verbal child, many teachers assumed he could handle academics, without realising he has comprehension issues. As parents, it hit us all too soon that though he was going to school happily, he was struggling to keep pace with his peers there and also in academics. Learning was not happening at his pace. It was a huge dilemma for us and we wondered what to do. The big plus, however, for school was socialisation, if you ignored the bit of bullying too that happens in school life especially if you are ‘different’. Having said that, Gopan & I sat down thinking, if indeed it made sense to continue sending Dhruv to the School, just for the sake of saying “my child goes to an ‘inclusive school'” ?

There are a number of kids with Autism who are verbal/ non-verbal with no comprehension issues. These children can cope with academics, even clear the exams/ boards (may be with a few accommodations which are permitted by the rules); so mainstream schooling works for them. Dhruv on the other hand needed an environment which had to be tailor-made for him. So, we started exploring options, and eventually zeroed on to home schooling. It was not an easy decision, and first “we as parents” needed to be sure ourselves, before convincing the child.

I have a B.Ed degree, and have taught kids in the past, but thinking of Dhruv being at home 24 * 7 was a little tough to digest. Could I do it ? Unlike those Hindi filmi moms, think Nirupa Roy, Reema Lagoo, I am no martyr, and definitely need my “me time”. So, how would that work ? What about his socialisation? Gopan was convinced much before me, and after lengthy discussions and multiple SWOT analysis we decided home schooling it is.

Home schooling has given us a chance to work at his pace, work on his life-skills and also focus on his musicality which is one of his strengths. This decision also led to another very important decision, and last month Gopan took voluntary retirement after his long innings with the Indian Navy, as he wanted to be part of this exciting new journey of home-schooling Dhruv.

Just as we were wondering how to explain home-schooling to Dhruv, the pandemic struck and suddenly the world over, every child was studying from home ! Do note there is a huge difference between home schooling and studying from home online but it made it easier to explain to Dhruv why we were home schooling. As he was learning music from “The Bangalore School of Music” ( BSM), we just told him his regular school was over, and now his school is BSM and of course learning with Amma!!!.

The last 6 months we have been home schooling Dhruv, and I am happy to report that he has actually become more social, increased his repertoire of language and now can converse in Hindi and Malayalam apart from English! During this period, he has also learnt many life-skills, wearing clothes properly and not inside-out, taking a bath, sorting his clothes, etc. His slow, but steady progress towards gaining independence in doing his own things by himself, is a huge milestone !

More info on home schooling and what we actually do, coming up soon 😊

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