To Share or Not To Share

Allowing your emotions to flow on paper in itself can be difficult at times and allowing them to be out there in the open for every one to see, is quite something else. I could have easily decided that I will share what I have learnt about the autism world without it being personal. It would have looked liked a well-researched article perhaps. The thing is, when I started learning about autism at the time we recieved the diagnosis, I got a lot of information but it was the blogs with first hand accounts and personal experiences that energised me.

Not to Share
The part of the world I come from, its not easy to share that your child or grandchild has developmental issues or has disabilities. The word autism is like a stigma that is best not uttered. Infact I almost sense that this is something people are ashamed about and want to hide. And if, like in our case the child looks as typical as his peers, parents may be in denial for longer than they should be and they would prefer that it is not addressed! I have heard from mothers of children with ADHD(Attention Deficit and Hyperactivity Disorder) that the father usually finds it difficult to come out of the denial phase. This is because children with ADHD may be good in academics and communicate as well but lack social skills and/or have difficulty self-regulating. So often its easier to say ” He will grow out of it”. This causes so much tension in the households and there is significant delay in managing the autism. When in denial, the question of sharing is out of scope! What if my child is not asked for play dates or invited for birthday parties? This fear that our child may be alienated, deters parents from being open about the diagnosis and they loose out on the benefits of sharing.

To share As parents we sometimes tend to seek validation or want to be heard out without being judged or simply want to brainstorm on domestic problems. Parents caring for children on the spectrum really want more such oppurtunities but instantly feel the lack of it because friends and family in most cases can’t really identify with their situation. This so called Autism Spectrum is as broad as the number of kids diagnosed with the disorder. It just means that within the autism spectrum, each child presents unique challenges. Yes, there are some broad categories but if two mom’s with the same diagnosis were to discuss, they would find that their children are so different. So this makes it even more challenging to seek specific answers to manage the situation they are in. However, if more parents were to share and information got more specific, imagine how helpful that would be. Just as helpful as all the parenting sites you register with when you are expecting your first child. Apart from sharing within autism groups, being open about your child’s challenges, gives a chance to parents with neurotypical children( another word for typical or normal children) to accept and make accomodations for your child. While it is difficult for them to understand all of our challenges atleast we offer them a chance to sensitise their children to the needs of our children. This allows for more social interactions which is so essential for our children. When I shared my first blog, I was asked by a family member-“Is this going to be read by everyone? Why let everyone know about your child?” Yes, I am writing about how I am helping my child and my world revolves around him but the focus in these blog posts will always be the process and not my child. Sharing the process especially if you think it works well, I believe is a good thing. We are all familiar with how sharing of best practices, be it in workplaces or businesses has only been beneficial, so why not put it into play in this aspect as well?

To my fellow-moms When Prince Hamlet said “To be or not to be” , he was deciding whether to stay alive or escape from his troubles by dying. To share or not to share, is synonymous in the sense that it it is about deciding whether to help, enrich and live positively or choose to be in a shell that gets hard for you to handle in this long haul.

Managing Vs Treating Autism

Here I take off on a note from my last blog –The Denial, the Realization and theĀ Setback. I received some feedback saying “Its sounds like you were marketing for Dr Woeller’s website”. So with this post I would like to clarify that.

Imagine this: Day 1- You get a headache, you just deal with it or sleep it off. Day 2- You wake up and you still have a headache, you head to office and people around you seem all insensitive and loud. The work that comes in seems like a burden and you did rather get to end-of-day as quickly as possible.If you are unlucky, you may even have an argument with a boss or colleague. You pop a pill and hope the headache subsides. Day 3 – Voila! No head ache, just a bit groggy, but feeling so much better after all the sleep. Days go by and Day 6- The headache is back. Damn! Now you start thinking- Is it lack of rest, am I not hydrated enough, is it a vision issue , is it the cold weather, is it a case of indigestion? From all the probable causes lets say it turns out to be vision-related. Great!You now know where to go and what to do.

May I rephrase the above – You tried managing the symptoms by popping a pill and when you went after the root cause you were actually thinking of treating it. Treatment, need not necessarily be in the medical context. It can be anything which is healing, or anything that is therapeutic.

Now consider: A young child, 2-3 years old, with underdeveloped language skills, looks pretty much like the kids his age, has some weird requirements that seems to hassle the parents a lot and has tantrums that cannot be explained. This is not the terrible twos or tantrum threes that is seen usually in typical kids that age. This is basically some physiological problem presenting itself in the form of a tantrum or rigid behavior or trying to escape situations.

Now compare for yourself– The adult with the headache got away with his behavior at office, but the 3 year old child got the autism diagnosis and did not get a treatment for his behavior!!!

When I didn’t get answers from the medical community closest to me, I was told by the director of the academy providing the ABA therapy, to consider biomedical intervention. She herself, is a mom to a non-verbal child and believed that while ABA therapy can help in behavior management, skills and language development it would be more fruitful if as parents we also try to find out the root cause(s) and eliminate them. So the way I see it – play therapy,speech therapy,applied behavioral analysis therapy, occupational therapy and the likes will help you manage the symptoms of autism but you need to start on treatment to see the effectiveness of the therapies.

So how do I find the root cause and if I want to get my child the right treatment where do I go? As I said in my earlier blog, most pediatricians dont offer much autism-wise and that is why I owe it to websites like that of Dr Woeller where I understood the need for testing for food allergies, I understood the importance of heavy metal testing, the need for the GFCF(gluten free, casein free) diet and the need for supplementation. You may choose not to go to this website and try to find another resource elsewhere, but its important to find the resource that can guide you! Please be rest assured no marketing gains whatsoever!

Now that I have started, I will also mention that the Facebook lives of Dr. Jared Skowron is super-informative. He is also associated with Spectrum Awakening that has supplements made for kids on the spectrum. I will forever be indebted to the annual Autism Hope Alliance summit and the Autism Recovery summit for allowing me to sit in the comfort of my home and listen to the various interviewees who talk about managing and treating autism with evidence-based interventions that may be considered controversial; supplements suggested may not be child-specific but parents are trying these and seeing results. There were nights, I haven’t slept as I needed to catch up on the interviews while they were still free! They kick-started this Atypical journey in 2017 for me and every year since, during the April-June period I am rejuvenated by all the information they have to share.

Look out for our experiences on interventions that we used for our son in the future blogs.Until then, dont just manage; treat as well!!

The Denial, the Realization and the Setback

I remember the comments of the junior nursery teacher,when I would go to pick up my son from his school.–“Your child is unable to cut along a straight line”. “He doesn’t answer anything”. “When I asked him to pick up the paper and put in the dustbin outside, he just looked at the window instead”. “He cant sit straight and slumps backward.” I even sent her videos I recorded at home to let her know that he actually knows the alphabets, numbers and shapes that were being taught. She was surprised but continued with the comments.

At the time, we had moved to South Africa from India and my son was 4 years old, starting school with kids from various parts of the world and teachers with new accents. I was pregnant with my second child and I didn’t want to be stressed by a teacher! I felt the teacher was judging the child too fast and her remarks didn’t go down well. I was clearly in DENIAL-NOTHING IS WRONG WITH MY CHILD! The teacher’s comments still ring strongly in my ears because had I known the seriousness then, we wouldn’t have lost a full year and would have looked for concrete solutions sooner. Anyways, that is life and I just felt myson needed a teacher who could hug him, warm up to him and not be as distant as this teacher was. So my husband and I put him in a preschool kind of environment where there was more play, more color, less rules and more importantly hugs!

The first bad news came in the form of the first term report card where the ticks against the learning goals were marked mostly in the last column and now I had alarm bells ringing in my head and the teacher suggested Occupational Therapy. So we got the OT assessment and the report was filled with problems– poor bilateral integration, poor gross motor planning, fine motor skills affected, auditory processing affected.There was nothing positive and strangely no mention of autism! We also rushed to a pediatrician who couldn’t say much as my son wouldn’t comply with him. Since I was in my last trimester, I just let the dad and therapist do all the discussions. The OT sessions began and we conveniently waited as if the therapist had the magic wand that would wish away all of our son’s problems.

There was however no magic seen in the end of year report card. He clearly needed more one on one interaction at school and the Occupational Therapy wasn’t helping as expected. The experience with OT taught me that it needs to be done everyday for a good amount of time and NOT like how we did – 30 minute sessions just 2 times a week. In countries where therapy doesn’t get covered by the insurance or the medical aid, parents find it economically taxing in addition to the emotional drain. Children with developmental delays need continuous and constant therapeutic interventions in those initial years for you to be able to see results.

Delivery done and my second child out, I could re-focus on my first!! I was frantically looking for extra support in school when by sheer coincidence I heard about Applied Behavioural Analysis. Their assessment report clearly stated Autism Spectrum Disorder- Severity Level 1. It was like all hell had broken loose. The word autism to us meant something else altogether at that time….and it was impossible to see our child in that way. We were enlightened by this particular academy of ABA therapists that things can get better. I was given documentation and that was when I came out of denial.

The realization happened. We began to understand our child. We no longer found him stubborn or lazy, we just had to make ourselves interesting for him to participate. Tantrums during transitions got replaced by visual schedules. We reacted to situations differently and we just changed! Things can only get better right? Oops! No, its time for our first setback. We needed validation, guidance and support from the medical fraternity so we went to them and the diagnosis is confirmed by all kinds of pediatricians namely- neurodevelopmental and the developmental. All they had to say was- “You are on track…Keep doing OT and the ABA. That is all there is to do.” Visiting them was just a complete waste of time, effort , emotions and of course money! The answers you want as a parent are only in the RESEARCH. The reading and researching started and it continues until today.

I hope I didn’t loose your interest with a rant that long? This atypical journey is one of hope and recovery and I want the post to end on that note. So while you figure out and juggle between speech therapy, physiotherapy, applied behavioral therapy, occupational therapy and the likes, its also important to know that there are DAN (Defeat Autism Now) doctors out there- Yes, unfortunately they are so few, that one may mistake them to be quacks as your pediatrician is completely oblivious of them and is almost certain there isn’t a cure for Autism.BUT these DAN doctors believe that “Autism is Treatable“. They give hope and parents see results. Their work is driven by their experiences in finding the root cause , their insights that look beyond the symptoms and not on what the medical community otherwise is driven by -medicines and symptoms. I was lucky enough to get guidance on the website of one such doctor- Dr Kurt Woeller. My child was not a direct patient; I started on this path to recovery by seeking information from his website – autismrecoverysystem. He has elaborated the steps involved in the biomedical intervention and what it requires of you. If you are in the US and you can access these doctors its great but if you are in another continent you really have to be sure as to how much you can take up. I say this because some of these steps require you to don the hat of a nurse or doc giving shots and meds to a very young child! And the responsibility of your child lies in your hands. While I started warily on that front, I did use the knowledge to take a slightly non-invasive path.I was able to get some very important tests done with my son’s blood,urine and stool samples and the test results guided me through.

It will take a while before pharma and the medical community can provide us with the much needed help but with the number of autism cases rising to 1 in 59 children in the US alone, its only a matter of time that what the DAN doctors are practicing will be more widely accepted and pediatricians will have more to say than they do now!

Atypical Calling

“Roops”…..”Roopa” …”Roopika aunty”…..”Mama”….”Mommy”….these have been the words my eldest son has addressed me in the past 8 years of his life. Now as he begins to approach his 9th birthday, I hear “Mama” all the time and I feel a sense of pride to see how much he has grown. If you belong to the typical world, you must be thinking – What’s the big deal here? I have been addressed in many ways by my kids too. The point is your child called out to you in different ways showcasing their love and creativity while for my child he was merely addressing me the way his father or his grandparents or his peers would address me!!! Now that is neither creativity nor love but what a child on the spectrum deals with —SO MUCH CONFUSION, SO MUCH TO PROCESS…so he takes the easy way out…to mimic!!

So here is me, posting my first blog ever to share my musings and learning from this absolutely roller coaster ATYPICAL journey! Who am I? I am a stay-at-home mom to two lovely boys enjoying both —every atypical challenge my first child presents to me and with the birth of my second child in 2016, I get all the typical experiences that I missed the first time round!!! I juggle between the mundane household chores to being a parent to being a teacher to being a therapist whose loyalties swing between the ABA (Applied Behavior Analysis) strategies and the Son-Rise program strategies to being a researcher constantly looking for interventions that would steer us to recovery. Oh! I missed one more role which is- I need to help my child gulp down binders and supplements that go beyond vitamins and minerals.Even though I consult a holistic practitioner who guides me through, the decision to continue or discontinue these will be based on my observations of how my child reacts to these so I do what I think ideally a pediatrician should be doing! So that would be a short description of me and how my day spans out. Most mothers to autistic children or children with special needs or mothers to children with autism spectrum disorder will identify with this and I have just one thing to say, ” We can choose to be in this together and make things easy or make this long haul tougher by being in our shells”.

What can you expect if you visit my blog? You will see my anxiousness, my rants and helplessness but most definitely you will see my observations of life around with my child as reference point, some insight into those interventions that my child benefited from, some links to people and summits that helped me focus and stay motivated towards my goal. Yes, I believe completely that I can get my child to a point where his diagnosis will no longer hold good and he will not be distinguishable from the other typical kids he goes to school with.

This post will definitely be incomplete without a reference to the star in my life, my eldest son who is a very happy, kind and generous child. While he is described as weird and funny by his Grade 2 peers, he is absolutely oblivious of his diagnosis which is – ASD( Autism Spectrum Disorder) -Severity level 1 which is sometimes referred to as Mild Autism. He is the child who cant get the humor in a funny story but he would join in the laugh as he loves to see happy people around him. He is the child who cannot lie convincingly, the child who cannot understand why a classmate can be mean, the child who is so excited to see a friend that he would fail to greet and start talking about planes instead!He is a child working hard, putting hours on therapy and other skills development after school while his peers are enjoying free time. He is the child who has pushed me to put my best foot forward…. This is my calling- an atypical calling !