Most of us at some point in our lives have met people who are clumsy or uncoordinated. They may have bad handwriting, cut vegetables in a very untidy manner, not be able to learn driving or may not be able to catch a ball to save their lives. It is possible they may have Dyspraxia, and no you don’t have Dyspraxia just because you have a bad handwriting!  

When Dhruv was 4.5 years old, we took him for an assessment to a child developmental centre where the Occupational Therapist told me she felt that he has Sensory Processing Disorder and “Somatodyspraxia” (another name for Dyspraxia). He was diagnosed with Autism only by the age of 6, as he did not possess the classical markers of Autism. I was fascinated by the word “Somatodyspraxia” and wondered if she was speaking Greek or Latin. She then asked me to read “The Out of Sync Child” to know more and that’s how I started my journey of reading books related to developmental disorders.

Dyspraxia or ‘Developmental Coordination Disorder’ is a hidden disorder which impacts your coordination and motor planning. According to Dr Jean Ayres, the term Somatodyspraxia describes dyspraxia (difficulties with conceptualising, planning and executing motor actions) that is associated with poor tactile (touch) and proprioceptive (body position and awareness) perception and discrimination.

Confused by that definition?

Let me simplify it.

Imagine, if you woke up one day and found it difficult to do regular day to day stuff like wearing slippers correctly, brushing your teeth, spitting, washing your face, having a bath on your own, getting dressed (buttoning your shirt or zipping your jeans), wearing shoes, writing, eating, riding a bike the list goes on…how comfortable would you be ? And remember you also have Autism and are facing another set of challenges with it!!

Let’s start with the “simple” task of brushing. If you think about it, there is a lot of planning and execution required before one can brush one’s teeth. How to hold the brush correctly, how much pressure to exert while holding the toothpaste tube and how much toothpaste to apply? Do you brush upwards, downwards or sideways? How many times to brush before spitting?

Spitting too isn’t that easy as you and I take for granted. One has to learn how to spit. How to fill water in your mouth, how to cup your palm and hold water, how to make an ‘O’ with your mouth and spit it out and rinse your mouth. It doesn’t come easily for a child with motor planning difficulties; for instance, Dhruv learnt to spit only by the time he was 8. He still cannot cup his palm and fill water the way we do to wash his face or mouth and uses a tumbler.

Watching him struggle with these simple activities of daily living, made me realise how much we, the so called “normal” people take things for granted.   Living with Dyspraxia and Autism, challenges Dhruv to no end and yet I see try on a daily basis, somedays he succeeds and somedays he fails, yet he does not give up and tries again. As parents, we marvel at this spirit in him and it inspires us to do our best for him.

Some key points regarding Dyspraxia: –

1. For starters, a diagnosis is essential. A well trained and experienced professional should be able to diagnose it and suggest an appropriate intervention plan or strategy.
2. Many children with Dyspraxia struggle with esteem issues. Therefore, it is very important to bolster his self-esteem by working with his strengths to overcome weaknesses/ difficulties.
3. Children with Dyspraxia experience difficulties with both fine and gross motor skills. Hence, Sensory Integration and Occupational Therapy, aimed at improving the child’s motor skills are necessary. 
4. Integrating both sides of the body (left and right) or crossing the midline can be challenging for them. Make them do activities which use both sides of the brain. I have found “Brain Gym®” to be quite helpful; be it tracing the lazy 8 using both hands one by one, double doodles and many more.
5. Make the required accommodations for the child. Writing is a huge challenge for Dhruv, so we switched to typing. If shoes with laces are an issue, switch to shoes with Velcro, Crocs or Slip- Ons.
6. As they have poor body awareness, teaching them daily living skills can be challenging. Focus on one skill at a time by breaking it into steps. If teaching a skill involves 4 steps, you do the first 3 and make him do the final step independently. It is akin to him adding the ‘last piece’ to a jig-saw puzzle and thus completing the picture. This will give him a sense of accomplishment and keep him be motivated to try again, till the skill has been learnt in its entirety. This is called “backward chaining “.
7. Give simple short instructions for the child to follow. Always praise the child when he does something correctly.   
8. Children with Dyspraxia turn into adults with Dyspraxia, so it is important to understand their challenges. Some challenges they may be able to overcome with regular therapy, while some may last a lifetime.
9.  It is important to think, how useful will a particular skill be for a child for life and then work on it. For instance, taking a bath on his own is something he has to learn and is non-negotiable. On the other hand, if he does not pick up driving, it is not the end of the world !!!

For parents who suspect their children have Dyspraxia, the book “Dyspraxia” by Dr Amanda Kirby would come in handy.  The book “Out of Sync Child” by Carol Kranowitz would also help in understanding the sensory issues of the child.  

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

From time immemorial, dads are expected to bring home the bacon while moms are seen in a more nurturing role, caring for the family and bringing up the children. A mom could be running a company, yet she would be the one to figure out what’s for dinner or help her child make a chart for his science project. Coming to Autism, we hear of many moms who are doing such great work with their children and helping others too. Rarely do we hear about Autism dads, though there is a popular Autism blog “The Autism Dad”.

Autism is a life-changer and parents, be it a mom or a dad go through a journey of different stages till they reach that ideal state of “acceptance”. It is a journey one has to undertake alone and go through the various stages of shock, pain, grief, anger, frustration and finally acceptance. There are no short cuts in this and one would take his or her own time depending on who they are as individuals and their life-experiences.

An Autism diagnosis can be extremely difficult and trying for a family. It could shake the very foundations of a marriage like nothing else; some marriages survive, some do not. Many a time, dads may not accept the child’s disability and become estranged from the family. Such dads miss out on the pain and the joy of bringing up such a child and also the chance to discover their inner strengths.

Some dads could be part of the family, yet plagued by “acceptance” issues. They incessantly worry about their image, society and the stigma attached to any kind of disability. These dads try their best to keep up the pretence of “normal” for their child. In their efforts to hide the disability, they miss out on discovering the innocence and beauty of their child. Instead of looking at the beauty of the rose, they only see its thorns. Some of these dads do eventually accept Autism while some may remain in denial for life.

Then there are these dads, who no matter what the pressures of life, ensure that they make the child their number one priority. They bond with the child, spend quality time giving them unconditional love and support. These dads are on a different journey – seeing things from their child’s perspective, slowing down their pace, and discovering a new meaning to life.     

I have been able to do a lot of things like attend workshops, travel, write, take breaks and more because I know Gopan will hold the fort and take care of Dhruv. He is my go to guy and the one person who apart from me, truly knows and understands Dhruv with all his strengths and challenges. The father and son have their own “boys time” and do a lot of fun things together. I thank my stars that Gopan is super supportive as a dad and a husband. There are many more dads like him and sometimes I feel they don’t get enough credit. So here’s to all the Autism dads who support their families, YOU GUYS ROCK 😊

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

There is a memory that is etched in my brain. I was in school and had fared miserably in my bete noire Physics. I have always been a dreamer so while I loved English and History, the Sciences remained a mystery to me. My sisters are incredibly bright and always topped in school and my mom could have easily made that a talking point. Instead she simply told me, “It is ok, everyone cannot come first, right? Someone has to come in the middle and someone at the end… you will do better next time”

My mom had not read books or attended workshops on parenting like so many new-age moms, yet she instinctively knew what to say to soothe the crushed spirit of a young girl. She knew I was upset and instead of berating me, she showed wisdom and sensitivity. In my mind that was mindful parenting, though she wouldn’t have known its name.

Mindful Parenting…

These days, I am trying to consciously do mindful parenting with Dhruv.  

Many a time we assume things, make snap judgements and jump to conclusions. When you see a child who is non-verbal, you assume he does not “understand”. Similarly, when you see a child who looks “lost” you assume he is not “listening”. There were times I would be on the phone and since Dhruv used to be so quiet, I would actually forget he was there. The downside being I would end up discussing him and his challenges while he was in the room…listening!

My perception of Autism started changing once I read posts by Autistic people. Of course, Dhruv himself made me realise this crucial aspect when he started to speak and share details about places and events from memory. I realised a child with Autism may not speak, communicate or could even look “lost” yet, they could be “listening” and “absorbing”. It is a different issue Dhruv still struggles to communicate and the other day when I asked what makes him sad, he said, “Sometimes it is difficult to share ☹” That for me was another huge insight into his mind.  

A young adult with Autism shared in his blog how miserable he felt when he was talked about and ignored in spite of being in the same room, it was like he was invisible! I was horrified to realise I was making the same mistake with Dhruv and should not discuss him, if he was in the room; unless I was including him in the conversation.

While Dhruv struggles with comprehension and may not get all that is said, he is able to gauge the tone of the conversation from my facial expressions, which by now, he has learnt to read. I realised one should always presume competence in him since I don’t know what all he actually understands.

I then realised this is a common mistake made by a lot of ‘special’ parents. Ever since I started writing about Autism a few years back, I have had many parents call me for counselling. No, I am not a professional but as a parent bringing up a child with Autism, I have learnt a lot about this puzzling disorder and now I understand it to some extent. So, I share strategies that worked for us, in the hope our experiences may help other families.

Many a time during the call, I would hear the child in the background and the mom would be telling me of all the issues challenging her child. Once I realised my mistake, I started advising parents not to talk about the child in his/her presence. Apart from that, I too started taking such calls in private when I knew I would be discussing Autism and probably Dhruv too.

We are all very mindful when we talk to our family and friends, it is important we extend the same courtesy to individuals with Autism and treat them with dignity and respect irrespective of whether they are verbal or nonverbal. They are much more intuitive than you or I and can guess your attitude towards them which in turn affects their self-esteem and progress.

If you think of it, it is pretty simple, treat someone with Autism the way you would like to be treated, and yes always presume competence on their part.

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.

Haircuts! One of those things in life which we take for granted. If you need a haircut, you just go to your preferred hair dresser and get one, that’s about it, no big deal. Yet for individuals with Autism, getting a haircut can be a nerve-racking experience, especially if they have sensory issues. Some may not be comfortable with the sound of the hair trimmer, scissors, hair dryer or even the water spray. A lot of preparation goes in to ensure they have a smooth experience and more importantly they are willing to go back the next time!

Though Dhruv has sensory issues, over the years we had got him accustomed to the ritual of a haircut every two weeks. For five years, we took him to the same barber uncle, then we moved cities last year and he got introduced to a new barber uncle. He started getting used to him and then the lockdown happened.

The internet has lots of home haircut stories but I did not attempt it. As a result, Dhruv had started sporting a thick mop of hair and with the advent of Summer, it was irritating him. Yesterday after two months he finally stepped out to get a haircut. In the morning Gopan had stepped out to get a haircut at the salon and to assess how safe was it to take Dhruv. He came back and reported that Malhi uncle who normally cuts Dhruv’s hair wasn’t there, instead Gulzar uncle would cut his hair.

Due to his Autism, Dhruv likes routine and any change in it can cause anxiety and he has to be prepared for it. Over the years, we realised that writing and breaking things into simple sentences helped him process better and prepared him for new situations. He could then read what was going to happen and more importantly what was expected of him. So, we wrote in his book and explained the sequence of events.

1. Dhruv has to wear a mask and go to the barber’s shop with Achan (Dad).
2. Malhi uncle is not there but Gulzar uncle is nice and can cut his hair.
3. He would start by spraying a disinfectant on Dhruv’s clothes.
4. He would spray sanitiser on Dhruv’s hands.
5. Dhruv would sit on a chair.
6. Achan would hold Dhruv’s mask while Gulzar uncle cut his hair.
7. Once the haircut is over, Dhruv and Achan will go to City Super Market.
8. Dhruv could have a bath after coming home. 
9. Is it OK ? (This part is the most important bit of communication in this entire process as I am asking his permission, is he is ok to go ahead with this.)

I wrote down this sequence and made him read it a couple of times. He takes time to absorb and I felt a little apprehensive. He was going to wear a mask for the first time ever and face a new barber, that’s two new things at one shot, a toughie! The duo went off and came back a little later, Dhruv sporting a smart new haircut. I checked with Gopan, apart from his mask being a little loose, it went off well. Mission Successful 😊

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.

 A few years back Gopan and I got a chance to attend a workshop on Autism conducted by Dr Wenn Lawson. What was so special about him ? He had travelled across the globe to conduct the workshop and he has Autism ! Apart from his dreamlike academic credentials, which include a doctorate, he has authored 16 books ! We listened to him in rapt attention, totally mesmerised. He spoke of his life with Autism and his challenges. Listening to him speak and engage with the audience, sparked hope in my heart and I thought if he can overcome his challenges, so can Dhruv ! People like Dr Lawson or Dr Stephen Shore (another amazing autistic individual ) constitute a really tiny percentage of the Autism world, yet the fact they exist, inspire Autism parents and give them hope !    

“Hope”, the most precious commodity in every Autism family…

Today, my daughter will speak her first word,

And call me mama.

Today, my son will brush his teeth on his own,

And maybe, just maybe even spit.

Today, some kid will play with my son in the park,

And hopefully, not call him names.  

The list goes on and it varies depending on the child, the family and the severity of the condition.

Hope…

Currently there is no cure for Autism. However, there are many avenues for parents looking for the slightest glimmer of hope. Alternate therapies are the most common, and while none of them cure Autism, some may bring relief to certain issues that often manifest in individuals with Autism. These could be hyperactivity, anxiety and gut issues to name a few. Recently, I even heard someone suggest that Autism could be cured through prayers. The suggestion was received with a lot of gusto and many parents seemed interested in it as it gave them hope. The harsh reality is that many parents resent Autism in their lives and will do anything for a miracle “cure”.

I thought, “if indeed there is a cure for Autism, wouldn’t it be in the market by now”?

As an Autism parent, “hope” is my best friend, although she goes off on her little jaunts now and then leaving me alone. Yet even on my darkest days, I am not looking for a cure. You may wonder why! Once you accept Autism, you understand Autism is woven into the very core of your child. Every cell of your child is intertwined with Autism; into the very essence of his being. So, Autism and your child are inseparable from each other.

If we start believing in cures, all our energies will be focussed only in pursuing them and lose precious time which could otherwise be utilised to work with our kids and bring them up the curve. Kids on the spectrum are very intuitive and have heightened senses. If I start thinking that my son is “suffering” from Autism, I have to “cure” and make him “normal”, he will pick up those vibes. He will sense that I am embarrassed/ ashamed of him and lose his self-esteem. Rather than focussing on his deficits, we could try to focus on his strengths and the joy he brings to our lives just by being him. We are not looking for a miraculous cure but trying to make him independent and teaching him the ways of society so that he can lead a meaningful life.

We all are on different journeys and our thoughts and actions are guided by our life-experiences. Every individual with Autism is different and so are their challenges. For some, the severity of their child’s condition can shape their actions where they are willing to do anything to make their child’s pain go away. There are a number of parents who believe in fixes, cures in the hope that someday their kid will be “normal.”  In this journey, I have learnt not to judge as ultimately every parent best knows what is needed for their child. They are not answerable to anyone for the choices they make, however crazy it may seem to the rest of the world. If you are convinced about something, go ahead and do it. However, just ensure you do enough research and talk to people who have undergone a similar treatment for their kids with favorable results before you try it out.

“If you’ve met one person with Autism, you’ve met one person with Autism”

Dr Stephen Shore

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.

   

It has been 8 weeks today since Dhruv’s school closed and within a few days of the school closing the lockdown set in. A lot of parents are struggling with their kids in this phase of lockdown. Kids with Autism struggle much more as their routines go for a complete toss and they find it difficult to fathom what is going on. I am sharing some strategies I used with Dhruv, hope it helps other families.

How to tackle the lockdown :

1. Explain why schools are closed – My son’s school closed on 11 March so I explained to him now schools are closed and will open only in June due to Corona Virus. It is important we are transparent with them and help them understand the situation and set their mind at rest. In Dhruv’s case it also answered the question why he could not go out at all.
2. What is Corona Virus– the first point logically led to answering this question and I used a visual of Corona Virus and explained how it was dangerous and hence everything is closed and we cannot go out. Each child has a different level of comprehension hence it is important to simplify and explain in a manner your child gets it. 
3. Why should one wash hands and how many times– A visual, a video and writing about it helped Dhruv to understand why it is imperative he washes his hands and maintains hygiene. As he loves counting we make him count from 1000 to 1030 while washing his hands thus ensuring he washes his hands for 20 seconds.
4. Giving him predictability – I created a daily schedule and gave him some structure. Both Gopan and I started doing activities with him in the morning and evening. We also ensured he got enough breaks to do what he enjoyed which was listening to music apart from a mandated time for his music practice.
5. Teaching Life skills – Once the house help vanished, we involved Dhruv in all the chores at home right from taking out clothes from the washing machine, carrying the bucket, sorting clothes, sorting vegetables into bags, dusting, cleaning the house and more. He is learning essential life skills and also enjoying doing new things.
6. Teaching Equality and Dignity of Labour – It is important that we inculcate the right values like equality and dignity of labour to name a few at an early age and the fact that all jobs can be done by men and women. He got used to seeing both Gopan and I take turns in washing the dishes, sweeping the floor, making the beds or cleaning the house.
7. Online Sessions And Therapies At Home – We had never thought or imagined he would be comfortable with online sessions and would cooperate. To our delight he took to online classes like a fish takes to water! We also took inputs from his OT and started doing occupational therapy at home along with working on his communication and comprehension issues. 
8. Handling the rough days – There are days where he feels overwhelmed and gets upset easily. We realise how tough it must be for him to communicate his emotions, thoughts and feelings. Journaling is a tool that is helping him share his thoughts though it does not come easily to him and we need to give him prompts to share.
9. Unleash your inner child  – Group hugs, Tickles, Cuddles and lots of laughter is the norm in our house. We become kids ourselves and do kiddie stuff with him. The other day we took out all his cars and each of us had to pick up one car and describe it and then we assembled all of them on top of his toybox, I think I enjoyed the most! So go ahead and have fun with your child even in the lockdown 😊

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.

“A worried mother does better research than the FBI”

– Author Unknown

A few days back an Autism mom messaged me after reading one of my posts. She said that she was struggling with her child and I must be an awesome mom as I was doing so much with Dhruv. There was a lot of angst in her message and I could identify with it. This post is for her and for every parent who has ever doubted themselves in their journey with Autism.

The internet is filled with stories of Autism Supermoms. Who are they?

Well, they are Autism moms who are doing everything possible from managing their careers to smoothly running their households while effectively working with their kids and steadily bringing them up the curve. They are teaching them all possible skills from ‘Activities of Daily Living’ (ADLs) to Academics, Baking to Coding, Jewellery-making to Web-designing. A small percentage of these kids manage to do schooling and a smaller percentage even go to College. ( For a long time I ran after academics, it took me sometime to realise not all individuals on the spectrum are cut out for it.)

Initially when I started reading about these Autism Supermoms I felt awe mixed with inspiration. Then came frustration because somewhere I started feeling I was not doing enough. I woke up thinking Autism and went to sleep with Autism on my mind. We were spending a lot of money on therapies, books and workshops on Autism. Yet, however much I tried, I could not keep up with these supermoms. To make matters worse Dhruv refused to let me work with him and I felt like a total failure.

How were these supermoms so sorted and keeping it all together?

For me, just managing a day without losing my sanity seemed to be a challenge.

I started fretting and worrying like crazy, and one day, Gopan pointed out that most of them would have kids who were diagnosed early, say between 2-3 years. With Dhruv the psychiatrist was hesitant to confirm Autism even at 4.5, and we finally got a diagnosis only at 6! So, obviously they had a head start with their kids, but hey, we were doing fine despite a late diagnosis. Gopan’s words comforted me, and somewhere down the line I stopped worrying and started living!!!

Over the years ,I met many supermoms, some are dear friends and this is what I learnt from them :-

1. Beacons of Hope – Let these supermoms inspire and give you hope. Remember, they are not you and their challenges and journeys are different from yours. They have struggled against all odds and have achieved a lot due to their hard work, sweat and tears, and so can you.
2. Never Judge – Every Autism family has a different journey and one never knows how much of support those supermoms have. Some maybe single moms, some may have spouses in denial, some may have health issues with co morbid conditions and unsupportive families so never judge.
3. Avoid Comparisons – We may know Supermoms with kids on the spectrum who are doing well and end up comparing our child to theirs. That is totally unfair as each child is different, with different aptitudes and challenges. It is important to avoid comparisons and work with your child’s deficits and strengths.
4. Different Goals – Every mom including supermoms have clear and different goals for their children. Your child maybe verbal and yet struggle to communicate so getting him to communicate maybe your goal. Another mom with a non verbal child maybe working very hard with the speech therapist with a goal to have her child call out and say “mom” !
5. Appreciate Your Child – Most supermoms diligently track their child’s progress and appreciate the smallest victories of their child. Think of where your child was when you started your journey and look at where he is now and appreciate how far he has come. My 10 year old recently started eating fruit with a fork ( 2-3 year olds do this very easily but it was a victory for him and we were over the moon ! )
6. You May Be A Supermom – Sometimes without realising it you may end up inspiring another parent and that’s what a true supermom does. You never know but another mom maybe looking at you and thinking,” She is so sorted, I wonder how she does it.”
7. Be a Happy Mom –  I realised my son only needs me to be his mom, a happy mom who would enjoy his company, play with him and just be there for him. Never forget that for your child, you are the centre of his universe. Enjoy the time with your child, in his eyes you are a supermom 😊

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.

As I sit in my bedroom,

I can hear him play the keyboard.

I listen to the beautiful notes

And muse on who he is.

He is so much more than just a diagnosis or a label.

A child who breathes music

And regales us with his singing.

A boy wanting to make friends,

Play and have fun.

A child who tries his best at school,

Home and therapy,

Just to see his parents happy.

A boy who tries his best to write,

Dyspraxia be damned.

A child who has learnt to calm himself,

Even in the face of sensory overload.

A boy in love with alphabets and numbers,

Trains and buildings.

A child who loves tickles, hugs and laughter

And spreads sunshine with his happy smiles.

A boy who wants to be accepted for what he is

And tries his best to communicate.

Sometimes succeeding and yet at other times

Looking sadly and saying, “it is difficult” or “you don’t know the words”.

He is Dhruv, the child who came to teach us,

That Autism is a life long journey of love, hope, courage and miracles,

While discovering the road less travelled.

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.

Yesterday I had a rough day.

Yesterday I cried.

Correction, yesterday I bawled…like a three year old in the confines of my bedroom.

Maybe it was the culmination of a lot of events happening in our lives over the last few months.

Maybe it was the lockdown.

Maybe it was exhaustion.

Maybe it was the uncertainty of our lives which hit special need parents from time to time.

Maybe it was watching Dhruv struggle yet again to understand a simple concept despite Gopan patiently explaining it to him multiple times trying different tacks. I normally tell Dhruv when I am sad/upset/happy/angry as a means to teach him about feelings but yesterday was not the day. So I called Gopan aside and told him that I was upset and had no clue what to do. He gave me a hug and said, “Don’t worry things will get better.” He then went back to Dhruv and the duo continued working together. I was to chat with my sisters on a video call but somehow did not feel like it and messaged them that I would connect later. Experience has taught me that sometimes when you are having a really bad day, platitudes do not help and a good cry is the only way to go, ergo the bawling.

I managed to compose myself and focussed on making dinner. Feeling Dhruv needed to be more independent, at dinner time I told him he could eat on his own (the last few days we had been feeding him as he eats more if he is fed). This upset him and he had a meltdown. He also sensed I was upset, so he said, “Amma not ok, Amma is crying” and since my nose looked like Rudolph’s nose (remember Rudolph the red nosed reindeer? ) he got upset even more and commented, “Amma nose red”.  I told him I had a bad cold hence a red nose.

Dhruv put in a lot of effort to calm himself and started eating dinner on his own. He then looked at me and said, “Give Amma a hug and then Amma will be ok.”  After dinner, he promptly came up to me and gave a tight long hug, holding me in a comforting way.  This action of his made me think; who says kids with Autism have no empathy? Dhruv sensed that I was upset without me spelling it out to him, just by looking at my face. Also, he knew I needed comforting and believed all I needed was a hug to make me ok and guess what !!!!!

His hug was truly the magic potion I needed to lift that dark cloud away 🙂

As I started feeling a little better, I thought : If it is tough for me, it is definitely much tougher for Dhruv. He lives in a world where being “different” is frowned upon and one is expected to conform, yet he faces every day with a smile. The current situation we all are facing with Covid 19 and the lockdown was playing havoc with his routine yet he was adapting beautifully. It crossed my mind Gopan and I are lucky to have this child in our lives, somewhere his innocence, purity and courage to face life inspite of his challenges is giving us a fresh outlook and perspective to life.

Cheers,

Suja 

“ Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.”

JK Rowling

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.

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

Author unknown

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

We all have precious memories we cherish, like fun with friends and family, falling in love, our first job, getting married, the birth of a child. And yet, it’s amazing how they quietly fade into the background at that instant when you’re told your child has Autism.

Autism…a six-letter word that changed my world and life forever.

I still remember the day we got the diagnosis; my mind was trying to absorb what the Child Psychiatrist was saying and maintain my poise while my heart was struggling to hold back the tears. I have a child who is happy and friendly most of the time, so this cannot be right, he cannot be talking of Dhruv…..screamed my inner voice.

The diagnosis brought mixed feelings; at one level, I felt relieved that we finally knew why Dhruv was behaving differently. At another level, it unleashed feelings of sadness, shock, anger, frustration, guilt and a loud repeated cry of ‘Why us’? I felt incapable of handling both, the situation and my emotions. Was broken, shattered and kept wondering if I would ever feel whole again.

Autism was new to my family so I could not fall back on family wisdom. In India, with the stigma attached to disabilities in general, parents with kids on the spectrum too were not comfortable sharing their experiences. I felt alone and clueless, went into self-doubts, started questioning my parenting skills and had quite a few pity parties. I don’t even know when those feelings started to abate and acceptance kicked in. But they did and I slowly started to heal.

I realised that Autism was not the enemy. It was intertwined in my child’s DNA and was an integral part of his being. This realisation led me to discoveries, learnings, re-learnings, reaching out, understanding, appreciating, recognizing and a host of other emotions and experiences that I didn’t even know I was capable of. I decided to empower and equip myself to deal with my child’s condition.

My largely fictional reading was completely replaced with books on autism, I attended workshops and training sessions, I connected and bonded with professionals online and offline and continuously explored ways to understand Autism better. As my knowledge of Autism grew, so did my understanding of Dhruv. This helped him progress better. I started writing about my experiences. Besides being therapeutic, my posts starting to help other parents as well. 

Autism has made me question and unlearn a lot of things I thought I knew. The hardest thing for me is to watch my son struggle with something I take for granted. Dhruv has Autism as well as Dyspraxia, so he struggles not only with social communication but also with activities requiring motor coordination. It is a mystery to us how he can have an amazing affinity to music, perfect pitch and yet not be able to write, brush his teeth or button his shirt. While he started reading very early, it’s upsetting to watch him struggle with even basic comprehension and grasping very little of what he reads. So, I teach him using games and books more suitable for a child half his age. 

My journey of discovery and dealing with Autism and Dhruv has had both – frustrating challenges and some incredible moments of cheer.  And that’s what I want to share through my blog. I hope they help parents who want to do the best for their child and yet sometimes get overwhelmed by the mixed information and signals from families, friends and society at large.

Autism means living with thunderstorms and rainbows. Some days I feel on top of the world and some days are really tough. Sometimes all I need to get through a rough day is a chat with a close friend and if I am lucky, I manage to get a hug from Dhruv 😊  

Living with Autism is not easy. All we can do is to be prepared to learn to live with hope, anxiety, meltdowns and lots of unconditional love.

Hugs and cheers

Suja

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.