Our Journey till date

This Blog post is the English Translation of our Journey which was posted in Tamil as below Youtube Videos:

https://www.youtube.com/watch?v=S1svxdUAHK0
https://www.youtube.com/watch?v=c6DPydjmT04

Hello Everybody,

Before mentioning anything, first we take this opportunity to thank all our subscribers, people who have taken time to like, view and comment on our videos and share them with many others as well, and also people who have taken time to email us. This has been our motivation to come this far and go further. When we began the youtube channel we never thought that we would post this many videos till date, we were surprised as well.

We completed 999 videos before this and my wife wanted the 1000th video to be special, so we decided to post our Journey. This took a considerable amount of time than we initially anticipated as a result there was a big gap in terms of time between the 999th and 1000th video. We tried to discuss and chart out details as to what should be shared, but we could not get the time to plan it out in a fashion we would have expected, but we decided the perfect time will never be there, we shall post whatever we remember at this point of time. 

In this post, we wanted to share details about our Family, why we started the Blog and youtube channel, and what we have learned from the Journey in a summarized manner. Ours is not a long journey, our son is 8 years old now, in fact we are still travelling in the Journey very much, so this is just a record/Journal of what happened so far, which may or may not be useful to others.

Why we have not talked earlier

We have not talked in any of our videos till date apart from commands/instructions that are provided as part of activities. This is purely intentional, as we are not experts of any form in the child development field, unlike many parents who have either become a therapist or remedial teacher or professional caretaker or life coach etc. We never did any course or certification on anything related to Child development, so whatever knowledge or understanding we have is purely specific to our kids. So we never had much useful knowledge to speak or offer to others. We read/watch/listen to information related to our child issues, try those approaches on our child, some work some don’t, that is the only knowledge we have. So the information that we have is not re-usable / applicable to others as it is highly specific to one child, unlike a professional opinion where pros and cons are taken into consideration. In this video we are not recommending anything, we are only sharing what we did, this does not mean that we are asking everyone to follow what we did, as there is no assurance that it will or will not work. Also I would love it if parents of children with special needs follow an approach, where you learn about the issue the child has, look for potential approaches that could resolve it, understand what each approach does to the child, prioritize the approach which is most likely to address the issue and work on it.

We do not run any online or whatsapp or telegram groups, we do not assess or recommend treatments, we restrict ourselves to sharing the learnings we have had through our child and apart from that we do not possess any knowledge or intelligence. Honestly I don’t have intelligence of any kind to do all that.

Our approach

Being Educated about what is happening to our child is necessary and not optional. Only when we know what is happening, we shall be able to tell others, make wise decisions, which ensures that the child gets the best care possible. When you do not have the understanding of what your child is going through, you are not really sure as to what is the right or wrong decision. As a result  you will seek out people (Fellow Parents or Professionals, etc) who have that knowledge or understanding to make or validate decisions for you.  We realized this is becoming an issue, as the people who we reach out for help have an understanding of such issues based on their personal experience alone, which may or may not help us. Also we would end up depending on a professional or another parent for decision making all the time, which is not the right way to go. If you would have gained as much knowledge as possible on issues/conditions related to your child, this enables you to make better decisions. We should be aware of the condition that our child has, we should know what are the potential causes of that condition, what are the therapy techniques that can be provided, what each therapy technique does to the child, which therapy technique is safe and offers best results, etc. This knowledge will help us in identifying which approach is relevant for our child, setting a realistic goal, working with the child at home, progressing them to the next level, etc.

At the same time we do not need the knowledge for making assessments, diagnosis, calculating IQ scores, providing ratings etc… This is not our expertise, for parents who are passionate about those things can go further, but they are least important from the perspective of parenting in our opinion. There will never be an end, if you take that Journey of becoming a professional. It is extremely difficult to draw the line as to what is relevant, as we are dumped with an information overload everywhere.

Need behind sharing the Journey

The main reason why we decided to post the Journey even though ours is extremely short, is due to the type or category of kids with special needs whom we are seeing nowadays. It is my personal view that, of all the kids who are getting diagnosed with any form of special needs, the major portion of them belong to the “Mild to Moderate” category of the respective disorder. They are close to being Normal, but in a few aspects they are unpredictable, it is not that they are different, certain bodily/mind functions cannot be managed by them. These are children who are on the border line, who can go either way. Our son also falls under this category. There are multiple reasons why this particular category has a higher percentage of children in it, which we are not discussing here. By providing Intensive early intervention to such children we can bring them gradually towards normal or help them to manage the condition they have, if left behind or not getting enough therapy, may regress them into a severe category.  We need to break them out of their comfort zone, establish a routine, avoid aspects that will isolate them, etc. We believe that sharing what we did to our son might help someone out there, before it is too late for some child, which is the pure intention behind sharing this Journey.  

Inevitable Question – Is he Autistic ?

Before getting in to details, let me start addressing the most frequently asked question by many about our son i.e. “Is he really Autistic? or He doesn’t look Autistic ?”. Now I want to address this question in two ways.

First one is where I take this as a compliment. Be extremely happy that we have progressed to this level, where he does not look Autistic. Only people who have seen him at a much younger age know the progress we  have achieved. 

Second one is on a serious note, “How would you want an Autistic child to look like ?” . The moment you say, he doesn’t look autistic, it only means that you have a stereotype image in mind that needs to match with every Autistic child you see ? Like a Noise canceling headphone, fidgeting toy on hand, loose fit clothes, drooling through mouth, awkward head or standing or sitting position, no eye contact, non verbal, head banging, hand flapping, jumping etc… If a child does not have all these, then he is not Autistic, isn’t it ?

Every child in this spectrum can have a different permutations and combinations of symptoms which are not easily visible to a naked eye, and they do not get triggered to all children in the same way. In addition each of these symptoms present itself with varied severity levels from mild, moderate to severe. It is a neurological disorder and not a physical one that is visible for a naked eye. The symptoms are only seen when there is a need for communication/expression. I feel we still need a lot more awareness mostly among parents on how Autism presents/appears itself among different children. 

About our Family

Myself Karthikeyan and my wife Saranya we have been married for 9 years now, our elder son Swamynathan is 8 years old now studying Grade 3 who was diagnosed with ASD at age 2yrs, we also have a daughter who is 5 years now and a neurotypical. We are born and brought up from Chennai. I am an IT professional, my wife is a housewife. My mother stays with us and my father stays with my brother, so the grandparents swap houses as they like to spend time with their grandchildren and help us out in whatever way they can.

First I need to talk about my mom (Grandmother of Swamynathan) who is now 65 years old. She is the major contributor for the improvement we had in our son. She is the full time speech therapist at home with an unimaginable patience. Everybody has their roles and duties in place in a family, especially mothers and fathers have a lot to do in today’s context. There is a constant travel, restlessness, change of schedules, worrying about future, thinking about past, pressure to earn more, monitor on the spending, satisfying the social circle we interact with each day, etc. which is always on the mind of most parents, with all this going around in the brain when you approach a child for spending time, it will not be productive/happier/satisfying in any manner, as you are totally burned out and you are not in a position to think clearly as your brain is focusing only on the next item on that “To-Do” list. If you do not do it, it will not get done. There are exceptions where you get a few days where your schedule is less and you get more time to spend with the child, but these days are extremely less in number for many. Most of us look forward to the minute where the child gets to sleep so that their brain can now relax. With this context, the person who is not exposed to the outside world, the person who is not under any pressure to perform any task by a given time are typically grandparents. They have a relaxed approach, different perspectives of things, suggestions given on problems we face are at an entirely different level. Not saying they are correct all the time, but when compared to the decision making process, we often take decisions keeping our comfort in mind as we are the person who is going to execute it, so we tend to be partial on the decision making process. But grandparents make decisions based on the issue and focus only on the fix that would resolve it, instead of thinking whether it is difficult or doable or what it takes to perform, which is an input we need when making decisions for our children.

His Grandmother used to take picture books, story books, flashcards on her hand and keep telling him what it is every day, irrespective of whether he listens to her or not, she did this religiously every day for more than a year. As age progressed and when we started seeing developments, she began learning more new English words just for the purpose of teaching her grandchild. This is a critical part of his development, as most parents are impatient when it comes to the outcome or result, every one feels that whatever intervention we did is more than enough to either fix an issue or for the child to show results. His Grandmother approach is totally different, she was patient, she did not look for results/response/fix, she trusted the process and did her part as a duty consistently, which provided a breakthrough at a future date which no one can predict. (This is a law, you can refer to the “The Plateau of Latent Potential” concept from the book  “Atomic Habits” by “James Clear”.). She was his safe corner, where he received nothing but nurture, care, love and affection.

Second, will be my Father (Swamynathan’s Grandfather) who is 74 years old. When everybody speaks about men of the previous generation, we only look at their outdated thought process, narcissist behaviour, rude approaches etc..but no one thinks about what they have gone through. No one discusses the triggers or pain they have gone through, every one lines up to shame the “reaction to the trigger”. Most people have been a victim of this approach. His Grandfather is how men were in the previous generation, where they battled for survival to ensure their generations live a peaceful and comfortable life, instead of saying “thank you” and being grateful, we are shaming them for what the environment made them to become. Still I would say, when you are in a crisis, with all professional help at your fingertips, you will still run to them for help, they represent a mental toughness which I rarely find in people of current generation, as people do not get challenged enough or they easily break down for every little challenge that life throws at them and go hiding.

Now coming to him, he is a man of the previous generation who takes pride in being a provider, irrespective of whether we are thankful for his contribution or not.  Even at his present age, he is still working and earning for their grandkids as he feels it is his responsibility to do so. Same way he looked for ways in which he can contribute to the development of our child, he carries his grandson every day in his shoulder and arms , goes for a walk around the neighborhood, speaks to him, points at things and says to him what they are, every time when walking up or down the steps he would count the numbers, our son has learnt to say numbers because of his grandfather only. Sometimes he says Alphabets as well, which our son used to repeat as well.

We are extremely fortunate to get their help in bringing up our children. They are still finding ways in which they could contribute in spite of their age and physical ailments/illness. The amount of support which we received from them through this Journey cannot be put into words. Initially they were of mixed opinion about therapies and working out at home etc, as it was new to everyone as a family, but they trusted the process and our judgement as we began seeing progress. They saw the struggles which we as parents went through during the Intensive intervention period. They also did question about the things which we do to understand what it is for and how it is helping the child, what is the proof etc.. They are very basic in nature for which we were unable to provide a proper explanation apart from what therapists have said to us. 

Next to Grandparents, the person who played an extreme role in our son’s development is our Daughter i.e. his younger sister. Being a girl child she provided an intensive intervention to our son which no therapy center could have provided in such a short span of time. We know these children are not in the same mood every day, some days they are extremely co-operative, but on some days they are zoned out, stubborn, non- cooperative, where whatever we do to them on those days ends up being of no use. There were many therapy sessions which became unproductive purely because of his mood on certain days. But with a sibling at home, he cannot run away or go hiding from her, she will chase him and never leave him alone, until she gets what she wants. This became an amazing therapy for our son, who disliked socialization in all possible ways and was now forced to socialize with her sister. 

Her contribution is much more than a therapist because she is at home all the time. Our son got used to being around her, adjusting to her non-stop crying when she was baby, managing his possessiveness in sharing parents with another child, got used to the excessive attention she was getting in early ages etc.. All these aspects created an environment , situation, scenario which helped him to read and understand what is happening around and adjust accordingly. Our daughter is like a permanent therapist at home for our son, she will constantly provoke him, stimulate him in every possible way. This helped in socialization, pretend play, fighting, turn taking, sharing, understanding emotions, competing, reading faces, taking revenge, complaining,  etc. When there is no escape the child will learn to adjust and adapt. She did what our developmental pediatrician asked us to do i.e. when the child is in their own world, do not break it, you enter in their world and use that as an opportunity to bring them out of it or look for possibilities to learn / teach. 

At the same time we are not asking everyone to have a sibling, we are aware about the risks and possibility of having a second child who can be autistic as well. We took precautionary measures that were available at that point of time which is to take a NT (nuchal translucency) scan. We took it from Mediscan, which is located in Mylapore (Chennai) next to Citi Center. The results came out stating that we have a probability of 1 in 2500, that this child can become autistic. We also know parents who had NT scan results that had a probability of 1 in 200 where they do an Amniotic Fluid test from the Uterus for further testing, who ended up having a normal healthy child. So nothing is certain. 

Next important family member would be my Elder Brother, we were a joint family till our son was born. Later we moved to a different place.  His contribution to our son is on the religious side. My Elder brother is very religious, he does pooja every day, can speak/ understand sanskrit even though we are not from Brahmin community. He reads a lot of religious literature, visits temples all across India in his busy schedule. He is a highly disciplined person. When we were struggling at one point of time as to what is the next step, his prayers helped us at a right time. The temples he went and prayed for betterment for our son has showed us right directions when we were in confusion state of mind. It provided the clarity or backing that we needed. As this is an aspect of belief, I will not speak much about this in this post. My brother and his family were the only point of socialization for my son, as they have one child older than our son.  Even though my brothers son is 2 years elder to our son, he is the only person who can come down to our son level in order to play with him whenever we requested for, this cannot happen with outside children or school buddies as no other children would like to play with children younger of their age.

Not asking all the family members to provide therapy or be therapists to the child, they can support the parents in many ways who are running behind therapy centers with the child. Providing confidence and motivation to the parents when they feel really down. Help with prayers. When you have an understanding family around you and they all look forward to ways in which they can be of help, the results can go only one way i.e. positive.  We are blessed in many ways because of them.

Why to have a Public Forum (Channel and Blog)

As mentioned earlier, I am reiterating again here that we are not experts or professionals of any kind, we are parents with below average intelligence and nothing more, this raises the question as to why at all we need to have a platform like blog and youtube channel to share when we are not experts of any kind.

Let me explain that here, ever since the diagnosis of our child, the time I have spent on learning more about Autism, Interventions, Brain stimulation, Sensory integration became a major part of my life. I would be either reading a book or an article or a research video or a parent testimonial etc.. to get a multi dimensional view of what it is. At one point this information overload became too much, it was extremely overwhelming as there is no way this process will ever come to an end. Slowly I moved from online information to in-person parent workshops that explained what it is, what can be done at home etc… which was more relatable, specific and doable. But the information again cannot be remembered all the time whenever I want to refer, so I decided to document it somewhere for quicker reference from any device , any location and at any time, hence decided to post it as a blog. This is how the blog (whatautismtaughtus.com) got created.

I use this blog as a ready reckoner for me to document notes I have taken during workshops, conferences, seminars, review of an experience or my own perception of things, so that i can refer to it anywhere any time. 

The blog is not flashy, it is not intended to appeal to a wider audience, it only has content which I feel is relevant that can benefit a fellow parent.

Next is the history behind starting a youtube channel, which was started around Feb 2020, just a few months before lockdown. The youtube channel was started for many reasons:

1) It all started with an idea from our Speech therapist who was trying to teach the concept of “Past Tense” to our son. She tried her best to teach with pictures, stories, ipad videos etc.. but it did not help our son. So she suggested to take a video of an event which he did the previous day and show that video to him the next day to make him understand that what he did in that video happened in the past. So we began doing this as part of therapy, so we recorded videos of all places where we took him and showed it to him the day after to understand the concept, which helped him.

2) In the above process, we saw that he really liked seeing himself on the videos performing various acts. Which gave us an idea to upload such videos to youtube, so that we can show it to him any time / anywhere, without worrying much about phone memory or loss of data. Every child’s motivating factor is different, it is important that we find this at the earliest.

3) Also it was very difficult to get an Occupational Therapy at that point of time, whoever we were seeing had left the job or pursue higher studies or went abroad or began independent practices with unaffordable fees, he was getting less OT like one or two sessions per week, which we felt was insufficient, so we decided to take the job ourselves. (disclaimer here, we are not suggesting everyone to do this)
4) In addition to that, we had this channel for our Motivation. As parents we became more disciplined, purpose driven to try various activities and post them. The comments, views, likes by you provided the motivation needed. We started to look for ideas from youtube, instagram, facebook, pinterest, Google, etc.. and modify the activities according to the materials we have at home and according to our sons level and try it out.

6) Performing different activities provided scope of using new words, this helped in increasing the vocabulary which resulted in improved speech.

7) We also followed a few books, which provided better understanding on the sensory issues the child has and what activity needs to be provided. I will have another post on the books I have gone through and have it on the pipeline.

Why did we name the channel or blog “What autism taught us” ?

Most people have mentioned to us that our child does not look autistic now, so we should change the name to something else, hide the history that he had an Autism diagnosis in the past. We also know people who do not want to subscribe to our channel because of the word autism, as following our channel will give a wrong picture about them to their social network. 

We have no shame in this, we contribute our progress to the openness we had with our son, which created a welcoming atmosphere wherever we went. We did not hide or conceal that we have such a child, misdirect or deceive neighbor’s about his actions, etc.. 

Everything which we have learnt, understood about parenting are purely due to the diagnosis of Autism, we are forever thankful to this diagnosis as it made us better parents. This is a never ending journey, we are going to be learning many more that will help us handle our children in a better way.

So the name “What autism taught us” came up all of a sudden, decided to check for the domain name availability, found it to be available hence registered immediately, all of it happened in 5-10 minutes. We find this name ideal and have no intentions to change it. 

Coming to the History…

Birth Complications

My wife was very close to a full term pregnancy. Due to less AFI (amniotic fluid index) levels we were asked to Induce labor days before the due date. On the day of delivery the natural pain did not occur, induced pain did not help on the dilation, after 8 hours of Struggling/ waiting for natural delivery the doctors came up with the news that the heart beat is getting lower, we had no other choice than to agree for an immediate C Section surgery. Within minutes our son was in my hands. He cried as expected, was breastfed with no issues.

Now the issue that we have faced here seems to be a common phenomena in most hospitals, a higher percentage of soon to be parents are not going to challenge or debate a doctor recommendation, fearing the outcome. For others who do not understand why we have a dilemma to opt for C section, is the basis on which the decision was arrived at. If you had a natural birth, you are discharged in 3 days or less with very limited medicines, but if you deliver through C section, you will be discharged only after 5 days, you will require tons of medicines, dressing, removing stitches, etc. everything happens to contribute towards the Hospital’s revenue.

One should also understand the process/transformation a woman goes through during this, as it has a lifelong impact. Most medicines injected during the pregnancy especially the one put at the back in the spinal cord region causes more harm than benefits in the long run. No woman is the same after a C Section, irrespective of how they look outside. After any surgery normally the person is expected to be taken care of by others, but only in C Section the person who is operated on has to be taken care of and also take care of the baby when they are in no position to even raise their head from the pillow. The amount of medicines which they consume to prevent the infection due to a surgery has an impact on the baby. We are learning now that when a child does not have a natural birth, they miss out on the Vaginal bacteria contact, Primitive reflexes being retained etc. 

Apart from that, he was given vaccinations as per schedule, mothers feed was continued, gave nestum, cerelac etc..We followed practices what was widely followed or had a precedence in our family.

Early signs which we ignored:

As a parent, if you have zero knowledge about child development, milestones, what is usual/expected and what is not, then you will never see the warning signs. We did not see it as well, as we were ignorant. Later when we began reading and understanding more, we found that we ignored many of the warning signs, sharing few which he had:

1) Sensory issues when taking a bath (especially washing his face), high sounds, flashy lights, nail cutting, touching hair, sticky foods, etc..

2) Motor delay issues like skipped crawling phase and began walking

3) Sleep issues – Does not sleep easily, has fixed routines. Any change in routines is a nightmare as he will cry. Putting him to sleep was a difficult task, we used to swing him for an hour until he fell asleep. When we shifted to a different place where we did not have a swing, I used to take him on a car ride at 10 pm in the night, until he sleeps.

4) Auditory issues where he does not like crackers noise, cooker whistle, mixie noise etc.

5) Did not have social smile, had issues in digestion when solid foods was begun

6) Excessive Thumb sucking, lack of bonding with parents, etc.

7) Toileting, bedwetting etc.

8) Other classic symptoms like repetitive actions, above average pain tolerance, No eye contact, No response to name calling, self engaged, lack of socialization, spinning objects or toys, etc.

9) Liking towards Screen time, especially Rhymes.

10) He was non verbal

All this was observed till 2 years of age.

Turning Point

We highlighted this to our Pediatrician on our scheduled vaccination visit. He initially ignored our observations, kept insisting that boys talk late. As we explained more and more, reluctantly he suggested putting the child in play school for a few months and observe the progress. If there is no progress, we have to stimulate the child with Speech therapy.

When he was around 2.3 years of age, we placed him in a play school nearby, within a month the school teachers found him to be different and highlighted all the issues he had like he is always isolated, plays with one toy, does not look at others, he is non verbal, etc. They asked us to take him to a specialist.

We were not sure as to how to process the information and got struck by this thought for a few weeks. It was a confusing stage, as we do not want to do the obvious which is to take him to the specialist just because a school has recommended it. 

Let me narrate how a totally unrelated incident helped us here. One fine day, we saw an advertisement in Nanganallur Times. As we stayed there during that time, there was a 2 day workshop on Eggless baking. As we are vegetarians, I thought of sending my wife to this as it was just 2 days. She, being a very shy, introvert, not open to new experiences, happy to be in comfort zone etc…said yes which was a surprise to me as well. On day one I dropped her in the class, it had 3-4 participants, they had time to chat during the baking process, during the conversation when sharing stories about each other’s family and my wife explained about our son. The person who was taking the class mentioned that our child has Autism or ASD as all the symptoms matched with that, as she has a son who is also Neurodiverse. She gave the guidance which we needed at that point of time. She urged us to start with therapy at the earliest, as our son is at the right age for early intervention. We took the contact details of therapy center details from them, contacted them who mentioned that we need a formal assessment to be done before beginning the therapy services, so we did that.

The pediatrician assessed our son for 45 minutes in a very detailed manner, he sat with him, played with the toys, tested his eye contact, how he played etc, inquired about our family history etc. After that broke the news to us that he is having ASD, and the CARS score at that point of time was 35 to 40. Later we were directed to the therapy center to begin with Speech, Occupational and Special education therapy. We began therapy from the very next day.

Therapy / Therapists

His Initial therapy began when he was around 2.7 yrs of age, he got 45 mins of speech therapy, occupational therapy and 1 hour special education totaling to 2:30 minutes with 15 to 30 minutes of break for lunch or snacks, coming to 3  hrs. We stopped play school and focused on development. so for 10 months straight, he had therapy for 6 days a week and each day was 3 hours. There was no compromise on that.  Therapy center experiences are totally different to us, they are not doctors, not medical staff, but rehabilitation professionals. So we do not know what they are supposed to do and what they are going to do, will it work etc. In less than a month of therapy we saw an improvement on eye contact and he was naming objects in which he was trained in.

The first therapy center we went to was a closed room model, so parents are supposed to wait outside. My wife waits outside the therapy center for 3 hours every day. This is not considering the time taken for,  to and fro travel from home to therapy center. During the waiting time, she got a chance to interact with other parents which was again a learning experience. One parent shared about the improvement they saw due to homeopathy medicine, so we inquired the doctor details and consulted them. We gave homeopathy medicine for a couple of years, though changed doctors in between.

After 10 months of therapy, my wife was due to deliver our second child, so we had to take a break from therapy due to practical difficulties. The break was for 4 months where our son was put into a play school closer to our in-laws place due to non availability of therapy centers there, this really caused a regression. We really did not know what regression was and that regression was possible at that point of time. This was a mistake which we regret till date. But at the same time, change in place/surroundings helped his sleep patterns, adjusted to different food, he adjusted well to sleep with extended family members as well.

We later moved to Neelankarai in Feb-2018 and this is where we are residing till date. Due to relocation we were looking for new therapy centers close by. As time is of essence, we joined a therapy center immediately based on a google search. We began Siddha medicine for a month for Gut issues, which really worked for our son. He never had bloating, no smelly stools, the bowl movement had a routine since that month. But unfortunately, we were unable to continue in that center, as they were also catering to adults and teens with special needs who had made noises, which our son learnt and started exhibiting at home during this period. 

We came to know about another therapy center from an older therapist who was in contact with us, and we joined that therapy center, where we continued for 2 years. This is a place where we saw major improvements, for the first year he was given therapy for 6 days a week for 2.30 hours every day, in the second year it was reduced to 3 days a week by the therapy center. Sometimes we do get  additional or compensation sessions on weekends as well.

Jun -18 onwards we started sending him to school. He started L.K.G, as he was 4 years old at that time. He used to go to School in the daytime and therapy sessions in the evening or afternoon. The routine became fixed.

We saw issues in school like lack of urine control, not being interested in going to school, mood swings, transition issues, etc…at the same time we started seeing improvement from therapy sessions as there was increase in vocabulary, sentence formation, understanding, writing, thumb sucking stopped, sight words reading, He cooperated with therapists well, which in turn motivated the therapists also.

We slowly introduced him to drawing classes, handwriting classes, phonics classes, to find out how he is doing in group classes and also to bring school readiness. We saw improvement on group classes as well due to this. 

April 2019, we did another round of assessment to find out his current level and assess if the approach we are doing is correct or does it require any change. He got a CARS score of 26 which stands for Minimum or No Symptoms of Autism. We wanted a proper assessment report, as it may be required for school admission as well.

Feb 2020 – The day we decided to begin working out at home is from when we saw nothing but only progress. He was 5 years old then. Due to lockdown therapy centers were offering online sessions, which we are not interested in. We stopped therapy during the first lock down. We are working with him at home with what we know. He was so relaxed when we stopped the therapy, there were no forced schedules and he cooperated well on much complicated stuff at home at ease. 

Approach we followed

As we mentioned earlier, we are not experts in any field, we are merely learning through our personal experiences. Honestly, we are below average idiots if you consider our academic achievements. The isolated people who no one would want to interact with. In a way this helped us in many ways, as we did not get much attention or we were not influenced by the social circle around us.

Our decision making style was simple and straightforward as we did not possess the intellectual ability to overthink, over complicate, imagining the worst case scenario all the time, simulate everything mentally, look for medical references, proven therapy practices, parents testimonials and decide. We are more towards action, anything that brings positive improvement is the right approach, whatever it may be. So we took chances, made mistakes, realized it quickly and learnt from our mistakes. This is where we feel most parents are hesitant, as every parent wants every decision they make to be perfect/ideal/cannot be criticized by others, rather than keeping the child as a focus when making those decisions. Again not suggesting everyone to become idiots like us, we are only mentioning what we did and why it worked for us, also this will not be a right approach all the time.

We did not decide an approach and force it on our child, hoping for wonders. Whatever that has worked for him, became the approach we followed i.e. Reverse Engineering / Trial and Error method. Any approach which gives positive progress to your child is the right approach for your child, it need not be traditional or conventional, it could be any.

Trusting a therapist is a difficult job, as we never knew the angle of approach they perform for our child is correct or wrong, we often interrupt / cross-examine, interrogate to the point, they will lose interest in our child. We had trust in the therapists, never interfered with any therapist’s style or their approach, because we did not have the knowledge. We observe what they do and how our child is reacting to it. We do not believe in micro-managing or commanding therapists, they need full freedom to try a range of approaches until they find the right one.  We were also very cautious not showing off the knowledge which we have gained over a period of time, just for the sake of it. We were always at the receiving end of information from therapists, never debated with them.

Now whatever we want to happen to our child, we do it ourselves at home. We see what the therapists are trying and how our child is reacting to it, we try to change the parameters, modify the activities, to find out the combination that works for our child. Our work was always in parallel to what happens at therapy.

We focused more on the exposure, especially outdoors. Physically travelling out with a child having special needs has challenges in many aspects, as a result more parents totally avoid it or keep it to the minimum. A child has to be cooperative, not have a mood swing, should manage his sensory aspects, for children with mobility issues we need to carry assists or have a dedicated caretaker etc… In my opinion more than these things, the thought of what others think/comment about me and my child when we go out is the major factor that has de-motivated many parents in going outdoors resulting in lack of exposure to the child. There is shame which every parent has about having a child with special needs, which is common. But as you analyze why you have that emotion/opinion, whether it is the right thing to do for the child or not etc.. you will come out of it and do the best for your child. We should remember that our Goal is a higher purpose, all these aspects do not even deserve our attention as we travel on this esteemed path.

We have taken our child out more often, especially temples within and outside the city. Also we have been to (almost) all play areas and malls in the city, events etc. The exposure gave a chance for the child to observe what is happening around him/her, everything gets registered in the brain.

We have given more Television time to our son, as we find this has helped in his learning, speech etc. Again a disclaimer here, as more screen time sounds contrary to the belief that more screen time is dangerous to children, I will make a post about this from my perception separately. Screen time / Excess visual stimulation has its negatives on hyper activity, attention, focus which we are not denying. If you are in control of the screen time i.e. the content, duration, etc, then it is not the issue. If the child controls you, then it becomes an addiction. But remember that the children who are born now are living with gadgets all around us, so it becomes inevitable to avoid this. Use it wisely.

Spending quality time with children is extremely essential. One of the Major category of issue which every parent see with the child is Behaviour related. There are different reasons why such issues arise, one of the root cause of many behavior issues is that child does not get enough undivided attention from the parents. By doing more activities with the children we began spending more time with the children, this way we are providing attention at regular intervals this prevented behavior issues that arise due to attention.

We started reading more on parenting, which i believe is the need of the hour for every parent or soon to be parents. Equip yourself with the knowledge and understanding so that you are not ignorant. We did less shouting, more warnings, fewer punishments, fixed schedules, reminders, all these helped us handle our child at different points of time. 

You become a parent when you give birth to the child, but you learn parenting on the go. In a Traditional setup, where you are surrounded by support systems in the form of larger family or neighborhood or community etc.., not knowing anything about parenting was fine. But in today’s context where the family structure is nuclear and living in isolation, you need to learn parenting. As the challenges that are faced today are different from what was faced in previous generations. There is no one size fits all approach here. The more we began to learn about parenting, we understood the mistakes we are making, we understood how the child sees things, we understood the unrealistic expectations we had from our children etc. It is always the adult who has to go down to the child’s level, not the other way around.

When you do not possess the necessary knowledge about the child development or issues which are common for a child during certain stages, you will be dependent on the professionals. Any professional who you meet and ask for a suggestion / recommendation is ethically bound to give you an answer or a fix. The parenting will become more professional dependent as you do not know anything about taking care of the child, this is not a healthy practice.

Children need a welcoming and visually friendly environment for them to play. A house which is clean where things are at its place all the time, does not encourage the child to play/explore. Our house became more children friendly, every wall had stickers, charts, marker boards, toys hanging etc. Invested on toys that are open ended. Exposed to arcade games, we invested in a few therapy equipment etc… So there was a stimulation happening one way or another at the house. A toy by itself is not harmful, it is how you use it that makes the difference. All this helped him getting the necessary stimulation from different sensory aspects.

We do not believe in the statement that “Autism is a disorder, there is no fix to it”, it is highly demotivating and discouraging for any parent to start an intervention for their child with the hope that it will be a lifelong condition. I wish to call the same with a positive attitude, i.e. “I believe that there is a fix to Autism which is yet to be found”. Everyone will get this fix at some point in future. I find medicines have a role to play in Autism. The core of the issue is caused in the brain, and its connectivity with the every other parts of the body or the obstruction in neural pathways. There is a less clarity on what medicine is helpful, when it is helpful, what does it fix, how long does it needs to be consumed etc.. are the places where there is no clarity found. Have seen medicines fix gut, vitamin deficiencies, yeast infections, detoxifications etc.. showing major improvement on a few kids, but not on all. Be is Siddha, Ayurveda, Homeopathy etc.. Biomedical interventions have had its role in showing improvements on issues that can be fixed with medicines and diet.

Like many parents we did everything, there was diet, there was supplements, there was intensive intervention, home therapy, there was outdoor exposure, there were prayers etc., hence we cannot contribute an outcome to one particular area.

We stopped forcing the child a lot, initially we were doing it. Whenever we force him, we saw more frustration, disobedience, resistance gets build up a lot. Instead if we make the atmosphere welcoming, prepare him mentally in advance, plan for transitions, provide warnings and reminders, etc.. it makes parenting a lot easier. Especially on the socialization part, where whenever we see a child of his age we did not force him to look at that child and say Hi to him/her, he was not interested on socialization in earlier stages. But post lockdown we see that he is more eager to socialize and communicate with other children or even adults.

From my observation, i see everything that is supposed to happen to a child is also happening for the child with special needs, but there is a time lag or time delay. Some parents come to a conclusion that if certain things did not happen by certain stage, it will never happen so there is no pointing in trying to fix or provide therapy to work on those. As a result they give up when they still have time.

We are also focusing on aspects of Childhood Trauma, which seems to be the hot topic for a couple of years as everything an adult does today is linked with his childhood. So we are ensuring that they get a happy childhood , does not face fear, does not get traumatized by parents behavior, does not shame him, does not embarrass the child, etc. It is highly important that we do not cause/create new issues for the child, it is more difficult to fix an issue, hence it is wise to prevent such issue from happening to the child in first place.

Learnings from our experience:

1) In our opinion Therapy really works. We do not question it. Any parent who is sharing a success story of a child will definitely had therapy as a major contributor for the improvement. But it takes time. For a child who does not got any stimulation, will benefit from therapy immediately. But a child who is already getting stimulation from his current environment, but it is inadequate, in which case therapy takes time to figure out the right approach for that child. Therapy is a foundation which is not visible, what it does is often reflected in a future period, some times even after stopping therapy services. So we conclude that therapy did not work, or state that things started working when we stopped therapy etc.. It will take its time, will never happen as per the schedule we have in our mind. If you do not have a proper base done with therapy, you will continue to depend on various services throughout the lifetime of the child. When you have a strong base, it will prevent so many future issues from occurring.

2) Diet also has a role. It differs from family to family, so there is no one diet that is going to suit every child. A diet need not be fancy or expensive. The thumb rule is more home cooked food and less processed / packed / frozen/ contained food. We avoided milk products. Cheese and Maida causes discomfort to him. Apart from that we have provided all foods which we eat.

3) Therapy time that you receive in the center alone is not enough. We need to follow a home program as well to see results. Even if you are getting a high number of therapy sessions, there is no guarantee that all sessions will be productive as it all depends on the mood and co-operation of the child. One of the other reasons for opting for home programs is also due to the cost factor, if you calculate the amount that is being spent on therapy services, you would see that 70-80% of our monthly income is spent on them. In addition to it, travel expenditure.

4) Apart from therapy, there is an investment that is being done on a monthly basis to keep the child occupied. Be it a new toy or a coloring book or activity book or coloring stationery, story book, tracing, magic pencil, craft, slime, clay, etc. It becomes a necessity if you want to avoid the screen time or keep it under your control. These things are to ensure that he gets a motor activity, sensory stimulation, brain stimulation, muscle tone, cognition etc.. in his present environment itself. Also it helps in breaking him out of an obsession as these children never limit themselves to anything, they go all in. So we need to distract them with stuffs frequently.

5) More than parenting, we should be aware of what the child needs or would need. It is no longer an option for us to stay dumb and expect things can be done by making payment to a professional al the time. You have to educate yourself on sensory processing, brain balance, primitive reflex integration, rhythmic movements, right brain stimulation,  gross motor, fine motor, bilateral coordination, mid line crossing , brain gym activities etc.. If you do not have knowledge on these, you will depend on the professional where you will spend a fortune.  When you do not have awareness, you will be ignorant, which means the decisions you make from ignorant mindset will not work out as expected all the time. So equip yourself with required knowledge, this brings confidence and helps in better decision making. 

6) Setting up a routine for the child really helps, until 4 years of age, he did not have a fixed routine. After 4 years of age, there was a routine to sleep, take bath, wake up, break fast, lunch, dinner, snacks etc. We saw progress after that in many aspects. When the environment is predictable, there is a sequence to the events, there is a familiarity etc.. all these provides a confidence to the child, so he does not get surprised by any new aspects. They feel like they are in control of the situation and they are prepared for it.

7) The progress is not going to be smooth, there will be ups and downs. There will be times where the child may exhibit more new issues than what he already has, this will put us on a backfoot. There will be times where there will be no improvement from the childs end in spite of all your efforts. It will be frustrating and you will begin questioning every decision you have made. Remember that results are not immediate in many children, it takes time for them to register, process information and respond, hence progress is guaranteed for the effort we have put in. It is only a matter of time.

8) Childrens peak development period of the brain is approximately 6 years of age, where the grasping power is high. Anything which you want to teach the child is easier, with limited efforts. It does not mean children at higher age will not have any progress, the effort what we need to put as the age increases will be twice or thrice. We were lucky that he got most of his intenventions during this phase.

9) Journaling really helps to keep track of your child. List of what he likes to eat, what toys he likes, days in which he gets sick, how long does it take for him to recover etc.. With these kids there is never an isolated event, there is always a link to a trigger which we ignore. Having a record helps you to find a profile of the child, like what is he allergic to, what is his favorties, medicines consumed, supplements etc..

10) Periodic assessment is also important to find out the present condition of our child. Especially it is important when you follow an home program. If you keep following a practice based on a historic assessment, there is a very good chance that you will end up providing over stimulation to the child, which could cause new issues as well. Assessment is a painful process, it is very complicated in the present system, but it is essential. The frequency depends on the severity of the child.

11) You need to have a support system to work with you. Speaking to fellow parents who have travelled this Journey ahead of you is very helpful as well. You will get a picture of where your focus should be. Most senior parents would ask you to focus on Behavior but all young parents will focus on academics, this is why it is relevant to speak to a parent who crossed this Journey.

12) Relationship with Husband and Wife is extremely critical for childs development. There will be issues in any marriage which come and goes, but the challenges in a family with special needs child are multi fold. I am sharing few what we have observed:

a) Fundamentally Men and Women think differently, Men go by Logics and Women go by Emotion, so it becomes a challenge to arrive at a single decision that satisfies the both. In many cases either of them are not fully satisfied, but still if you trust the process then please extend your support to it.

b) Stop with the blame game as to which side of the family is responsible for this, so that one side can wash their hands off. Focussing on what can be done is the right approach.

c) Do not make decisions based on pressure from extended family, in-laws, social circle, neighbors, people at work, etc.. The decisions are taken considering the childs present condition and what will benefit the child alone, be it conventional or unconventional.

d) Do not feel shame of having such a child, do not deny the child the life they require just because you find it tough to handle the reactions received from the outside world. Do not take decisions keeping your comfort in mind.

e) Taking care of a special child requires more than two hands, if either of the spouses are not offering helping hands, the family well being will be compromised. Parents are required to be strong emotionally and physically to handle the stress, manage their emotions, so that they do not compromise the care required for the child.

Remember this, when things go wrong none of them will run towards you to help, so you are responsible for all the decisions you make. At the same time remember that there are no shortcuts. Ensure that you stay happy in front of the child, do your debates and fights when alone or not in front of the child. Parenting is the duty of both.

13) When making decisions, do not keep your comfort as a preference. Focus on the issue and fix , be prepared to perform whatever it takes. When you give importance to your comfort, it means that you are not willing to go beyond that comfort zone for helping your Child, in other words you are preventing a care that could help the child to progress well, just because you do not like to be part of it. Compromise happens in various ways.

14) Another important aspect is what you need to learn and what you need to unlearn. This is a mistake everyone does without even realizing that it is a mistake. We all have an information overload through all formats of media. We have all information required in order to make a decision, which means our decision should be 100% accurate and fool proof right ? But is it so all the time ? For every decision you are going to make, it becomes practically difficult to read all relevant literature on that, understand and evaluate options and then arrive at a decision. So you need to pick areas as to where you will do such in depth analysis work and where you would not. 

If i were to read all literature on autism and draft the best plan and then began working out with my child, nothing would have worked. As i would have wasted years on the research loosing critical development period of my child. Reading literature never ends, as it will always refer to another source, another research, another study, it is a never ending rabbit hole.

Action oriented approach is lot better focussing on issues which we feel needs immediate attention or affects his day to day living. Also we realized that there is no perfect approach, it is decided on various parameters which keep changing frequently. What was an ideal therapy technique few months back, will no longer be helpful to the same child now. Restrict yourself to content which are published from trusted sources. Do not listen to unqualified people. Listen to people who speak common sense. You need to know whom to read instead of how much to read.

15) Motivation is extremely important, whatever motivates you keep doing that. In our scenario we were extremely lucky as my wife is extremely skilled on aspects that are related to art, craft, decoration etc. She does skill thread bangles, paper quiling as hobbies. Her mom and elder sister are tailors by profession so she stiches all her clothes by herself. She also learned new stlyes by joining tailoring classes as well. Also she took tuition to smaller kids for a while during free time. She was never employed, so her world revolves around this. When she was presented with an oppurtunity to teach kids art, craft etc.. it was more exciting for her than to the kids. She becomes a child in the process. It comes easy and effortless for her. From my perspective i love reading books, toys, physical games etc.. so i take responsibility on those aspects. I love playing with the toys which i buy for my child, more than him.  We take our responsibilities with liking, so we never feel worried about it or consider it as burden. We are more excited during an activity time than the child. 

16) Special education is highly relevant from early stages. People often consider special education as academics and tend to ignore it totally in early years, but they all have struggled with schooling at later point of time in one way or another. He got special education since 3 years of age and stopped around 6 years of age, when he became to the level where we can manage at home. It has many prerequisites skills that are relevant for many execution skills. A concept is covered in one angle in occupational therapy, in another angle in speech therapy, in another angle in special education, only then the child will be able to grasp it. A 360 degree view helps the child during initial stages.

17) Our son beneffited a lot from Worksheet based education which is often ignored by many. A concept which was difficult by itself, can be broken in a simple and understandable manner through worksheets. We used worksheets from google earlier, but later we were able to prepare a worksheet based on what his academics or curriculum needs. My wife prepared most worksheets in handwritten format, we took very few printouts.

18) Choose your battles wisely. When your child is presented with many issues, you should not work on all of them at the same time or work on alternate days or schedule one issue one day. You have to pick 2 or 3 issues which are affective him severly and focus only on that consistently to see a progress or improvement. 

19) Try various approaches when it comes to teaching a new concept. It could be flash cards, videos, physically visiting the place, reading story books etc, explore all possibilities and do not restrict yourself to one particular way of teaching all the time. You will come to know which method your child likes the most and follow it consistently. In most cases an approach which is considered as best in paper, does not work out for our child.

20) Decide on the skills that needs to be taught to your child. There are certain natural abilities which a child possess, and few are to be taught. Again not all skills are required to be taught, you decide what is relevant to your child and teach only those skills. Must have skills should always be taught. You will get an indication if you follow the developmental milestones.

21) People often think that our child does activities easily which is why we were able to do this much. It is not entirely true, we have faced lot of struggles to prepare him for an activity. It took lot of time for him to get used to this routine. We realized that more than force, manipulation works.

22) We observed in academics, that in early ages up to Grade 2, we may not see any major issues as they will do extremely well or even appear to possess an above age intelligence. From Grade 3 or 4 onwards, we may see them struggling. It is because in early years they learn aspects that need more memory skills, but at later part they need to be more creative, comprehend etc.. which does not go well with their rigid way of thinking. We saw this in our son, working towards fixing it.

23) Language is another factor which has became an issue. Our son does not speak mother tongue as from early years his speaking was through threapy and all were in english, so he picked up english from the beginning. If your objective is communication, then what language you focus does not matter. He is fluent in English, but at the same time we are working on the mother tongue language in parallel.

24) Acceptance or Fear of Failure is something which we observed in our son a lot. He is more happy to avoid a task as he may fail than trying it out which may end in success. This becames an hurdle whenever we tried to teach him anything new. Then we made him understand that it is normal. I personally feel this habbit or charactersistic will stay forever, we are only working out or making sure it does not impact in his day to day activities.

Conclusion:

As mentioned earlier, we are sharing the Journey details to let others know what worked for us. We are not asking everyone to follow any of our approaches. There is no guarantee that following whatever i mention may not yield the same results to another child. Also we have observed that if you provide an intensive early intervention during early years consistently, the child may not need a therapy services for many years. If you are providing limited therapy time during early years, the child may need therapy as a life long service.

If you look back at what I have mentioned till now, it looks like there is so much work that is to be done. But it may not be the case for every child, some children require more effort, some require less effort. We are just saying what we did, we are not sure whether all children require such an approach or we did too much from our end. 

We considered it as our Duty to provide the best care for the child and not as an option. We never made our children feel bad for what they are, as they are a mere reflection of us i.e. parents . If I expect a change in them, then there is something which I need to correct from my end as well. We also considered this as a challenge given to us for proving our worthiness of having such a child. The more we resist on making the changes, it is some way reflecting on the child as well.

Ours is a very short journey and we do not possess any knowledge or intelligence, we are still learning and trying to understand many new aspects, we are not even sure how many people will find this post useful, however i am of an opinion that a process which has a yielded a result needs to be shared for the benefit of others.

Our since apologies if you get a feel that we went overboard in making any claims in the above post, or sounded harsh or agressive, or have a poor understanding what this disorder is all about or lack parenting skills in general,  etc..  This post is not a thesis or well researched study, this is purely from a personal experience stand point. Hence whatever we have said here is not a standard or benchmark. 

Regards,

Saranya and karthikeyan