A Cup Of Chai And A Perspective On Life…

This is a post by a mother with a child on the spectrum. I dont know Suja personally. But it really is a wonderful perspective.Suja…I love this post.

A Mom's Tryst With Autism

This incident happened about two years back. We were on a road-trip from Delhi to Nainital and enroutewe stopped to have chai at a small tea stall. While we had chai, the tea stall owner asked Gopan if Dhruv had any issues!

Gopan very candidly said yes; the tea stall owner sighed and said that his 12 year old daughter too had some issues!! He had taken her to many doctors, but sadly nothing had worked. She was going to school yet kept getting distracted and forgetting things a lot.

I heard him speak but said nothing as there was no way I could help him. I sensed his sadness and realised in that moment he was actually unburdening and connecting with Gopan, one parent to another.

I looked at Dhruv sitting peacefully on a chair and thought, yes, he has Autism but he is lucky we can provide…

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Intention in Inclusion

It’s been a while since I blogged. Just a lot going on in the head, as the new academic year for my kids began in August. We decided to opt for in-person school despite the Covid 19 concerns. Once we got used to the routines, I got myself thinking about the best ways to enable my son to get into a good steady pace for Grade 3. And amidst all this I knew if I do get to blog, I am going to definitely write about Inclusion.

Inclusion is a much talked about topic. Every one of us has an inherent need to be accepted, to fit in, feel wanted, to belong and not be left out. This is also the case with our children. The places that a child spends most of the time is home and school. It is therefore but natural for us to want that our child is accepted wholeheartedly by his teachers and peers at school.

While it is easier to cater to the needs of neurotypical children it’s quite a different ball game when a school takes upon the responsibility to be inclusive- which ideally means you accept responsibility to teach and nurture a child who is differently abled or has special needs. With responsibility, if there is true intention then the spirit of the child gets the much-needed boost. We found this intention in our child’s present school.

The background: When he was doing nursery in a preschool nearby, I thought of trying for admissions into the big school. However, after engaging with my child they informed me that they will not be able to support our child adequately in kindergarten. Their support facilities like Occupational and Speech therapy and Learning support team were all available only from Grade 1. The school advised me to think of a remedial environment which my child could benefit from and when he is ready to transition to mainstream (regular learning environment) they could consider our application again. However, we didn’t find enough options in the remedial setups for kindergarten age group. So, I decided to find options that could help my child assist him in his pre-school and at home. This is how we found the Applied Behaviour Analysis therapy. Within 6 months into therapy, my son had progressed from being in a shell to being interactive and with better fine motor skills.

One night I found the email trail from my last interactions with the school I wanted my child admitted in. With absolutely no optimism, I requested the same school to observe my child again and explained how with home sessions and school facilitation our child was coping much better. To my absolute surprise, the school agreed to re-evaluate the situation. The counsellor, who observed my child actually believed that with fair amount of facilitation there is a good chance our child could get the right kind of stimulation in this school due to the structure of their program. This was the counsellor’s vision. We are forever indebted. This school’s program required the child to engage with peers, in reading and writing workshops (not subjects) and was not really into the desk-chair-blackboard format. 

I absolutely loved this school when we got to see all the classrooms and facilities. It was just not like the other mainstream schools. Little did we know that there is more in store and we were only about to meet our angel. The kindergarten teacher was the “intention” personified. Her love, care and understanding for our child, along with the environment she cultivated in the classroom-of kindness and goodness helped our son forge ahead. As he moved to a higher grade, the number of angels in his life increased. He loves it at school and hates to miss even a single day. Just a few days back I had a meeting with the Grade 3 teachers and when the teacher listed out my child’s strengths, I realised that I need to give myself time to look at my child as an individual with many enjoyable traits. I felt blessed that my son was in good hands for most of the day.

A form of intervention:Considering the hours our child is at school including the bus travel, school is the biggest intervention that has helped him in more ways than one. Children learn so much from their social interactions. For a child on the spectrum who is mostly visual and need peers (to model for them), it becomes easier in a mainstream environment rather than in a remedial set up where the likelihood of learning from peers is quite inadequate. They learn the appropriate behaviours and responses by observing their classmates. My son’s rigidities to conform to sudden changes in schedules hardly ever surfaced at school and when it did it didn’t last long as he wanted to do everything just like his friends! The inappropriate responses and meltdowns just decreased with every passing year. This is testament of the fact that most children with learning differences and behavioural challenges can with adequate accommodations, find success in regular school.     

What are accommodations? The school took up the responsibility of our child and the teachers showered their best intentions. The actionable steps taken to help him thrive at school are the accommodations. I am listing a few for clarity. In kindergarten there was a stationary kit ready for the facilitator to grab and go with, to a room next door to work in, if my son had a meltdown. Our son was allowed to be facilitated. The facilitators gave him one-on-one support to complete his tasks. The teachers worked with the facilitators to make visuals and checklists so that his reliance on facilitators decreased. They gradually faded out of some sessions as he followed instructions and did tasks by himself. The school also helped create individualised learning plans for the year which involved assessing the child for the first month or two and then creating goals that the child should strive to achieve for the year. In Grade 1 for example, the goal for retelling a story was accommodated as allowing my son to sequence the pictures of the story in the correct order. In grade 1, his teacher gladly used an OT brush to rub his back with if he was fidgety. This helped him focus better. He was allowed to choose his reading spot that was least distracting. He could go for a run to get the silliness out! These were apart from the brain breaks and free choice that is applicable for all kids. Now in Grade 3, the learning support team is simply incredible and is pushing for complete independence. I can’t wait to see how this year turns out to be.

Flash back:I am almost certain that many of us cannot remember having seen a peer getting support of this nature during our school years and this is probably so because there weren’t as many cases of autism then and if there were learning differences weren’t actually noticed! Of course, the resultant behaviours were highlighted leading to eventual labelling of the child as a dull, slow child or an aggressive ill-mannered kid or a stubborn kid. If we did notice autistic children, they would be the ones at the higher end of the spectrum who looked odd,showed visible quirks or stims and went to a different school where all kids appeared to have issues and hence the word autism meant disability and sadness. Now there is greater knowledge of various learning differences and how there are kids on the spectrum who can be accommodated in typical school settings. They don’t have to always be sent to remedial or special needs schools. There is more in-depth knowledge of autism now and with schools trying to be inclusive, what is also required is –inclusion in the mindset of the larger community.

 As a parent, I have begun to realise that certain ‘accommodations’ need to be made at home, in school and other places for my child. Say for example -playdates, birthday parties, restaurants, airports, malls etc. Now I speak for mom’s with kids, who have more sensory and anxiety issues because of which they miss out on a lot. What can we as a larger community do for these parents and kids?

  1. Educate yourself about what autism is all about, so you can help your child be empathetic to the autistic peer.
  2. If you know one child on the spectrum you know only one child on the spectrum. This is because while two children have the mild autism diagnosis, they may turn out to be vastly different. Hence do not undermine the efforts of the caregivers. The less judgemental you are, the more you and your child will be open to understanding the autiustic person in question.
  3. If you intend to have the autistic child over for a playdate at your home, may be ask the parent how best the situation/transition can be made easy for the child. May be the first playdate includes the parents having to socialise too as the child feels secure enough to explore the new surroundings with his parents around. Maybe you have a familiar snack or fixation ready so the child feels at home. Everything is in the “intent”. I was very fortunate that I found good friends in moms to my son’s typical peers. I was open about my child’s needs and before I sent my child over, I requested for theirs to come over a couple of times. When the playdate concept was familiar, I sent him for a short while to his peer’s home. Now he is happily going to various friends’ homes and while I don’t tell them about his diagnosis, I tell them to let me know if they face any issues. Yes, a year back I would rather let the other mom know that my child is on the spectrum but we have come a long way since.  I just have to send along some gluten-casein free snack as that’s not usually available at most homes! Until now, its all been smooth and everyone finds him fun and friendly to have around.
  4. What could you do when you see a child lying on the floor screaming in a busy airport, with the mom standing there fazed? You could ask if you can be of help-get something from the shop on her behalf as she possibly couldn’t get to the store, herself? You definitely don’t want to talk to the child or address the child as the mom, probably is allowing the child to get through the meltdown and wouldn’t want strangers worsening the situation.  You definitely don’t want to judge her or advise her. If you didn’t have the time you could walk past and not stare. I remember how while waiting to board the plane in Delhi airport, I was finding it hard to keep my son from running away and a co-passenger came over and asked me does he have a mental problem. He was actually being polite to me by not using mad or insane! I must admit I was shocked to react then. Unfortunately there are people out there, who out of their curiosity say the most random things.
  5. Small gestures like allowing a parent to move forward in the billing queue because their child is unable to handle the waiting time, or giving some time to the child who is repeatedly running around a table in the restaurant, before you decide to talk to the caregivers, would make a world of difference.

If there is intent shown by all of us towards a child with needs, we can foster inclusion. I am my child’s advocate and I take this upon myself. However, if it was not me who was always seeking these accommodations and if it’s the larger community that says – Do you think this accommodation could help your child? Can we do this for you? I think inclusion just gets a whole new dimension.

Cleanliness redefined

Cleanliness is one of the first lessons of our life that our caregivers teach us. It is engrained that being clean is as essential as what food and water is for our bodies. As we grow, we may stumble upon concepts such as – having a clean mind and pure soul. There are spiritual gurus, various tools and apps out there to get us to do some soul searching and guide us to positivity. I believe that most of us are trying to be positive individuals and we are aware it is the need of the hour. With this we have touched 2 dimensions of cleanliness- external and spiritual. This post intends to create awareness around the third one which is -cleansing the body off the various toxins. is what this post is about. It is called Detoxification. In the past, for me the word detoxification meant green teas, lemon teas and saunas. I was oblivious of the effects of detoxification and its importance until the time I began to help my child. I realised or must I say I became conscious of the fact that there are toxins of all kinds that we are constantly exposed to. And during our time in this world our body and its amazing mechanisms take upon these exposures and works hard to keep us healthy.

What are these toxins and where are they? Some toxins like gases, vapours, mists, dust, vehicle exhaust are inhaled by us. The moment we open various detergents the bottles emanate vapours and gases constantly. Some even fall in the category of neurotoxins which means they can affect the brain. Its safest to keep the detergents in the part of your house that is least frequented. Also, it is best to use air-fresheners with caution. Buying unscented and fragrance-free options could help reduce the exposure in a small way. We consume some toxins like pesticides, fertilizers, glyphosate, chemicals from industrial waste when they find their way through our food and water. Processed food in itself has substances that have adverse effects on the body. When I see beautiful orchards along the freeways or highways, I can’t stop myself from thinking what the fruit on my plate was subjected to until it reaches my plate! Cosmetics like body lotions, creams and antiperspirants enter our body when absorbed by the skin. Soaps and shampoos too expose us to chemicals that aren’t always safe for the body. Then there is exposure to heavy metals like Mercury, Lead, Cadmium and Aluminium. These according to me are the big 4 to watch out for. Cadmium is high in vehicle exhaust and is used along with lead in coloured plastics and glassware. Also seen in the gold designs on the dinner sets. Aluminium leaches into our food through the cookware and foils used. Most vaccines other than the live virus ones have Aluminium in them as it is used as an adjuvant to increase effectiveness of the vaccines. Actually, since Aluminium is so abundant it is but natural that it enters us. Mercury enters our bodies through amalgam fillings and consumption of certain fish that have accumulated mercury. There are other heavy metals too and it is not possible to avoid all of them at all times. Another set of toxins are the biotoxins. Biotoxins are toxins in our body that are produced by bacteria and viruses. If we have constant exposure to mold in the places we frequent we inhale mycotoxins that also fall into this category.

How does the body handle toxins?The body uses its excretory systems to remove the toxins on a regular basis through sweat, urine and stools. The liver plays a vital role in detoxification. It has a substance called glutathione which is an antioxidant. While glutathione is present in all cells, it is more in the liver. Glutathione transforms the toxins into water soluble form which facilitates excretion through the urine. By drinking lots of water and having good fibre in our diet we support the excretory systems. There is also the theory that a pregnant mother tends to pass on most of the toxins to her first child in the womb. And this continues while breast-feeding the child as the body has found another route to excrete toxins! In the case of biotoxins our body tries to fight it off with inflammatory responses. Our bodies therefore have genes that trigger the proper functioning of the detoxification systems in our bodies.

Impaired Detoxification.  How does the information above connect with Autism Spectrum Disorder? When the detoxification process is impaired, that is when the glutathione is not being produced in sufficient amounts by the body, not only are the cells of the body under oxidative stress but the liver isn’t getting enough aid to flush out the toxins. Over time toxins start accumulating in kidneys, liver, lungs, brain and lymphatic system. This study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4017810/ ascertains how impaired detoxification can be one of the underlying factors in Autism Spectrum Disorders. Even other chronic illnesses stem out of impaired detox system in our bodies. From our son’s OAT (Organic Acids Test) report, we saw that in the Indicators for Detoxification section all the markers were in red. This meant that our child’s body wasn’t producing enough glutathione. We actually took time to get started on the treatment for this. I did hear about some really brave moms getting their kids to take intravenous glutathione IV shots but I needed guidance and didn’t want to take any invasive approach. Just wasn’t brave enough perhaps.

 Interventions Used. Apart from the glutathione IV shots, other invasive means that uses Chelation therapy involves injecting certain substances (EDTA) into the blood stream or it can be taken orally like DMSA and these bind with the heavy metals and is flushed out in the urine. In my humble opinion, I would never go for invasive chelation therapy options; they are too invasive and can do more than what they are meant to do.

Binders and Nutritional supplements While I was looking for non-invasive healing options for my child I found a holistic practitioner, Luminara Serder from USA (https://www.autismtransformed.com/services/) who was into an energy and informational healing protocol called the NMT-Neuro Modulation Technique. The protocol involved a step by step approach that made things very clear for me. It was mostly natural supplementation. Simplistically speaking the protocol used NMT to find out which areas/pathways to heal while the body gets supplements and binders in phases. There were homeopathic drainage remedies to support the various organs like liver, kidney, blood, gall bladder, spleen, lungs and lymph. We supplemented our son with nutritional supplements and binders like activated charcoal. These binders are substances that bind heavy metals and get excreted through stools. These need to be taken with a gap of at least an hour or two from food or nutritional supplements as they bind with metals and minerals without discriminating. There are products to help remove Aluminium. Selenium and broccoli sprout were added in later stages of the protocol. These help increase the glutathione production in the body when taken in right quantities. We have moved on to some binders from a company called Cell Core which work very differently from the usual binders like charcoal. These helps bind and remove the biotoxins, heavy metals and the environmental toxins. Over and above, they restore the cell functions. It is not an easy path to take. Most supplements have only dosages instructed for adults and is not really recommended for your kids by the physicians.  But we need to start somewhere. We have seen slow and steady progress. This is because removing toxins from inside the affected cells takes time.  

Footbath Cleanse To further support the detoxification pathways, we added AMD’s IonCleanse Footbath into our son’s weekly schedule. It’s a tap water footbath with an electrode array placed in it. The child has to just place the feet in the water. While it is not clear if the toxins may be pulled into the water from the soles of the feet, it has been seen that the body finds it easier to flush out toxins through the excretory systems after the cleanse. You will get conflicting views if you were to google. I first joined the Facebook group “IonCleanse by AMD for ASD” and when I felt I had enough reason to believe this could help my child we decided to buy it. Click here to view the presentation by a mom to an autistic child and who is a doctor herself https://m.youtube.com/watch?v=R2uM5GZiBfY&t=2059&feature=youtu.be. Here is the link to the study done by the thinking moms revolution group. https://thinkingmomsrevolution.com/wp-content/uploads/2016/02/TMR-Study-2-Whitepaper-ATEC-Changes-with-the-IonCleanse-by-AMD.pdf It was not easy for us to believe an expensive product but it comes with a 60-day, 100% money back guarantee and we thought- why not. Within weeks of using the Ion Cleanse we saw a drastic decrease in “silly” behaviours.  My son started at 20 mins and now he keeps his feet in the footbath for 45 min. He has never refused it and I believe he knows it helps him feel better.

Some important points:

  • Detoxification should be one of the first steps after or alongside the diet changes. In our case our son was already on a low-oxalate GFCF diet details of which are in the blog The Autism Diet .
  • Before a treatment plan, we need to ensure the child is in the habit of drinking lot of water and is not constipated. This is essential to excrete the toxins which are mobilised and bound by the binders
  • To start with supplementation if your child can swallow pills, it will help. Fortunately, my son had learnt to swallow pills with the help of his ABA therapists so the process was fairly stress-free. If this is not the case some of it would have to be mixed with food or water

We continue to use the supplementation and footbath. We intend to eventually bring it down to a maintenance regimen as exposure to toxins will always be there and some amount of regular detox is essential. I am not certain what impairs the detox systems in our kids but I do know that this causes the cells to be under stress. Move this roadblock and their body’s inherent healing powers will come into play. They will respond much better to the developmental interventions you already have in place. Over this last year and half as we helped our son detox, we saw him become more aware of the environment, there was more spontaneous speech and fixations were more manageable.We could not have done these treatments without the support and guidance from our holistic practitioner, Ms Luminara Serder. I wish every parent gets a guide who can steer them forward. I signoff with this note- For our children on the spectrum and for our own health, lets redefine cleanliness and bring in mindful choices into our lives. Let us not burden our bodies anymore rather let us help it detox.

Catch it early

How early should an early diagnosis of Autism be? Is there hope if it’s a late diagnosis? Once you have a diagnosis -late or early- the mix of feelings usually are the same – Feeling lost with all the innumerable questions, feeling guilty about all those things that happened in the past, regret for not having caught on to things early on and profound sadness.

When we are a first-time parent, we just enjoy the bundle of joy. Our world revolves around this precious life and we are looking for various new things that the baby is learning to do. We don’t actually think about what our baby isn’t doing! But it is a very different experience when we are parenting the second time round. We constantly compare and wonder why the child isn’t doing certain things that the older one did. So basically, the first time round you don’t have a reference point.

Babies grow so quickly. Every month in the first year is an event in itself. Every little milestone is actually an indication of growth and development. The time when your baby grasps your finger and doesn’t seem to let go is a very emotional moment but we don’t really understand that this is actually a reflex which has to develop further and integrate over time. Integration in this example means to grasp an object or the caregiver’s finger when the baby wants to do it and let go of it when not required. This is just one of the many developments that happen in that little body. I don’t think any new parent is aware of all this.  We just know the baby should crawl in some months’ time, should walk by 1 + year, and talk by 2+ years of age. And if they don’t, we are told by people around that we should just give the child a little more time. After all every child is different! Off course, if issues are more evident like weird repetitive actions, head banging or hitting we are more likely to be at the paediatrician’s office looking for answers. The problem is, if this is not the case and the challenges aren’t as distinguishable.

Based on our experience, these are learnings that we would like to share.

  • Parental Instincts must rule. We now know that it’s a good idea to just go with our own instincts. When we used to share our experiences, people around us would say “It’s going to be okay. He will grow out of it” or “He is too small, just give him some time” or “Don’t google. You are over-thinking” or “All children are like that”.  When in doubt its best to consult the paediatrician and rather than being doubtful be firm about your apprehensions. Try to ensure your child has the same paediatrician for all the early years. We were in Nigeria and didn’t have a paediatrician for our child. We mostly visited a GP for his ailments and vaccines. We didn’t go beyond the medical services that were available and find a paediatrician.  On one vaccination visit while in India, I remember how unsure I was when I told the doctor that I didn’t understand why my son doesn’t talk when at his playgroup, why he talks so little and the doctor said it’s probably just his personality. My child was 4, and I had so much trouble getting him to wait for our turn with the doc but when inside he was very happy to be compliant. He also said a bye to the doctor and the doctor said to me, he looks just fine. It is important to take your instincts seriously and to have a doctor who has been assessing your child through the early years; a random visit is not going to give the paediatrician any clear indications. It is also best to use the M-CHAT or Modified checklist for Autism in Toddlers  and approach a developmental paediatrician if you have any concerns.
  • Milestone tracking. Best to track the milestones and be on top of it. The Centres for Disease Control and Prevention in United States has a comprehensive list of milestones that we can keep track of. https://www.cdc.gov/ncbddd/actearly/milestones/index.html. Your paediatrician too will be able to provide the list. Ensure you use it as a reference but not something to stress about.
  • Earlier the better. For kids as young as 18 months to 3 years depending on case to case basis doctors don’t give a diagnosis early on. They may in some cases be able to point out development delays and hint the word “autism” to the parents. The parents can with proper guidance reach out to experts. They can quickly do the required interventions like Applied Behavioural Therapy, play therapy or speech therapy for a child who is non-verbal or minimally verbal. Occupational therapy could be started for a child who has sensory processing issues. Food sensitivities and immune issues can be tested for and diets can be modified early on Without a diagnosis but just with clear pointers, parents can get started on bridging the gaps in development. If we set out to do the interventions early on, in some cases if there is a diagnosis at 18 months it may not hold good by the time the child is ready for school. In other cases where there is a likelihood of an ASD diagnosis, with early intervention you may just be lucky to prevent it. The gentleman Raun K Kaufman (https://autismbreakthrough.com/) is just one of the many who have recovered from the ASD diagnosis.  For more hope and inspiration, you can look up the TACA website. https://tacanow.org/category/family-stories/recovered-from-autism/. An early diagnosis is effective only if it results in early effective interventions. These interventions should manage and treat autism.
  • Acceptance is key. In India the teachers in the playgroup didn’t have concerns but in South Africa, the school we enrolled our child into picked on our son’s development very quickly. However, we were just not able to accept it quickly enough. Being in denial doesn’t help at all.
  • The search. In some countries to find good quality special needs therapies is challenging. Registering with parent groups for autism can be one way of finding information on resources. For information on therapies and qualified personnel in your area, connecting with other parents with similar challenges will be the best. Finding experts to guide you is another challenge. There is help out there in the form of naturopaths, homeopaths or holistic practitioners. It is important to be organised about all the interventions and well planned in your search. You do not want to take on more than what you can handle.
  • Better late than never. Our son was 5 years when we realised, he had developmental delays. While the tantrums didn’t look easy to handle by this time, other developmental delays were subtle. We were also slow in getting started on the effective interventions as the actual diagnosis came in by age 6. We regretted that we may have lost some crucial years because it is true that the human mind and bodies are very malleable in the early years. The greatest growth and changes can be seen with interventions when they are applied early on. So, is that it? Will we not be able to recover our child? There is increasing research in areas such as neurogenesis, brain plasticity and the gut-brain connection. There are also articles on how homeopathy has been able to deal with autism symptoms. I believe that given the right interventions it is possible to be off the spectrum. It may take longer because it is a late diagnosis. Someday, I hope to post a blog that reads-” The Diagnosis is finally Lost”!

The most ideal scenario would be to catch it early and get on the recovery path quickly. However, despite the late diagnosis our son has made tremendous progress.  The recovery journey is hard-work but that’s a lot better compared to the other option -which is to live with the autism symptoms for life. I believe that the Autism Spectrum Diagnosis is a warning and our reaction to it can determine if it is here to stay with our child or not. Don’t let the diagnosis limit you or define your child. God forbid, if an early warning comes your way, be thankful -earlier the better and have your fighting gear on!  

The Visual Learner

Couple of days back I was looking at the instruction manual for a new intervention that we started for our son and I was trying to be very careful as I was handling the expensive device. Mid way through the process I realised I was hardly reading the text and relying so much on the pictures – how the amplifying unit should be charged, and what cable must connect to which point etc.

Difficulty transitioning. I was reminded of the early days when I photographed my child doing things in the daily routine, took prints and laminated them. Then I would sequence them and hang them up as morning routine and evening routine. There was a sequence of pictures for brushing as well. I even had pictures on the bathroom door, to remind him to shut the door when he entered the bathroom. You may think I got tired of telling him what to do or not to do, so I found a way out to get things done. No, I wasn’t tired. Yes, I definitely got things done! It seems so strange that every morning you wake up your child and he just doesn’t seem to understand that he needs to go through his bathroom routines and then get dressed, eat and leave for school. Being sleepy, being lazy, not wanting to go to school, giving excuses for not being able to wake up are what kids would do normally. Frustrating but at least I could identify with those. However, this wasn’t like that. And during brushing, he didn’t seem to remember how to get through with it despite it being the nth time. In the mornings, for some reason there is always less time and our tolerance levels are way lower. The struggle to transition had become just another part of our morning routine. Then ABA therapy entered our lives and I was told that most autistic kids are visual learners.  The first visuals I made were for the morning routine and the teeth brushing sequence. He would look at each step and copy the same. I think for the first few weeks every morning and night, I would stand next to him while he is brushing and he would see the visuals and when done feel so happy. It was slow but we were happy that it was smooth and there were no meltdowns.  I was already thinking about how I would have to carry these visuals everywhere I went! And then a month or two went by and we were having guests at home so I took off the visuals for that evening. Next morning, he was brushing his teeth and I realised I had forgotten to put the visual back on. He did all that he was supposed to do perfectly. I only realised then that he wasn’t using these visual routines anymore. He was actually relying on his own memory and skills. We get so caught up with new problems we don’t see the older ones getting resolved!

Countering Anxiety. Another big one which we managed to resolve was our child’s excitement every time we were boarding an aeroplane. While it is a good thing to be excited, for us it turned into a worrisome start   to (and end of) an otherwise good holiday. From when he was around 2 until now, this extreme desire to be on the plane has not changed. From the time we are near the airport, it is like we have a bomb ready to explode. He finds it difficult to queue up to check-in the baggage. At the immigration/emigration checks he would have tears rolling down as he can’t wait. During security clearance he found it difficult to part with his toy aeroplane and the meltdown starts. The excitement has now changed into high level of anxiety. And then it’s impossible to sit in a café or buy a beverage as he won’t allow it. We just prayed that the flight wouldn’t be delayed. We tried everything from favourite rhymes to videos but they could only distract him for a few minutes. We would walk pretending that we haven’t reached our boarding gates while he stayed distracted by the aeroplanes taking off or landing. Every flight from age 2-5 has been so stressful. The irony is, on the flight when all other kids are restless, ours is the best. On one occasion I had a couple sitting close to us compliment us on how lovely our boy was in the flight. They definitely didn’t see him at the time of boarding and I hope they didn’t see him at the baggage collection. We always had to deal with another meltdown at the conveyor belts as he would want to run back to board the plane we just got off! From the fifth year, for all our air travels I had a laminated visual checklist. I was so proud of myself after seeing how effective it was. It had images from google of every step of the entire airport routine until we landed and got into another taxi. Then a picture of the place we are visiting followed by the next flight back home. He got to check the box every time we finished a step and this lowered his anxiety. Of course, Rome wasn’t built in a day, and our problems too took time to resolve but what mattered to us was we saw a marked decrease in his anxiety with every travel me made. I reused the same checklist until he turned 7 after which I stopped. For all travels in the last one year or more he has been very comfortable with the queues and wait times.

Removing dependencies. At school, the facilitators noticed that after every step, in readers workshop, my son would approach his teacher to inform her he finished the particular instruction and would ask her what he needed to do next. Even if she told him what the next couple of steps were, he would still go back after each step. So, she put in place a checklist of the instructions/ steps and a stamp size laminated picture of our son. Every time my son finished a step in the process, he would put his picture against the next step indicating he is working on that step and on completion he moved the pic to the next step and so on. He no longer needed to check with the teacher at each stage. This helped him do the entire task independently. Overtime it also gives a sense of awareness that he doesn’t need help all the time and can attempt tasks on his own. This is very important because children who are facilitated in class room environments tend to be habituated or feel dependent on their facilitators. Having checklists like these, helps remove unnecessary dependencies.   

Evoking response. Social Stories are quite an important tool for children with ASD. These are basically visual stories custom made to the child’s needs. A story a day is definitely better than a monotonous lecture every day! We had many written for our son. From helping him get rid of his habit of squeezing his fingers, to staying on track in music sessions at school to seeking help if someone is mean or bullying him, we outlined many visual stories and read it out regularly to him so we can instil a certain response. Often social stories end with what the child’s response should be. And a visual story has the best effect. Pictures from the child’s own setting is preferred so the child can connect easily to the story.

Tips and tools. Visual tools like visual reminders, visual routines, visual checklists, visual schedules can really help your child deal with stress and anxiety due to new tasks, new places, or new people and also help in transitioning difficulties. These visuals should be placed or hung on the wall at the child’s eye level.  To give a sense of control and accomplishment, you can have your child use a white board marker to check the box next to the activity when it is completed. I would say that very often we need to be prepared to let go of the aesthetics of the house for the benefit of the child! When we started exercise routines with our son, I had pictures of exercises laminated and we would just re-arrange the pictures for our sessions as it wasn’t always a fixed routine. While Velcro is often used, we found Prestik (a reusable putty like adhesive) which helped put these visual aids in play. It’s always a good idea to make aids that are reusable. The more effortless it is, the more we are inclined to use it, thereby evoking better responses from our children. There is also an app called ASD Tools which really helped our son get through changing routines and tasks with ease. It allows to click pictures and you can make a sequence of tasks that need to be completed. Your child then gets a visual schedule (First-Then-Next) and you have the option of introducing the picture of the reward at the end of the task. For the child the processing of instruction is a lot simpler and you get to make the visual on the go with this app based on the needs of your child.

It is easy for us to assume that a task is simple enough for our child. But it is possibly not the case for our child on the spectrum. It is probably more or as difficult as it would be for you to install something the first time round without a manual. It is still not an apple to apple comparison as your neuro-typical skills help you manage the scenario but that’s not the case with the ASD child. Why limit the power of visuals to just the school or ABA sessions? Why not use it to tackle situations at home and see how it can empower you and your child.

The Core Issue

We all know and use the word “core” very easily in different contexts and the oxford dictionary gives us many definitions for this word; nevertheless, I want to put two of them out here as is.    1.The muscles of the torso, especially the lower back and abdominal area, which assist in the maintenance of good posture, balance, etc.  2.The part of something that is central to its existence or character.   While both these definitions are different usages of the word core; I want to say that by building our son’s core muscles we helped elevate his quality of existence! The core strength literally proved to be beneficial in building his character. Following post is how it all began….

OT Assessment. In the first assessment done by the Occupational Therapist, we saw that our son was developmentally affected in many areas. The language in the report was so new to us. Apart from low postural muscle tone and poor shoulder stability he had sensory processing disorder (SPD), which meant that he got overwhelmed if there was too much information for the various senses to process. He had an impaired proprioceptive sense as in, he isn’t aware of his body relatively speaking; example- he couldn’t with closed eyes use his left hand to touch his right knee. He had bilateral integration issues and he couldn’t cross the midline which meant that the left and right hemispheres of the brain were not coordinating effectively and he had poor motor planning or dyspraxia.

What this assessment meant. In our son’s case, we received concerns on fine motor skills being very poor; way below peer-level. Picture this, a child of 4 years trying to use a pencil or crayon to trace a dotted curvy line. His shoulder and wrist are not stable so his attempt looks like a hair that’s fallen on the paper! However, he notices that his peer next to him is having thick lines on his work and is quicker than him. The next time the task comes to him what do you think will be his response? A young child isn’t going to talk about his problems, instead he or she is just going to try every trick in his little kitty to escape- crying, tantrum, running away, and in some cases may have a meltdown. There is a good chance he will not pick up the pencil, or he will wait to be supported. The teacher or parent may consider this as being stubborn, because if they just put their hand on his he writes the letters! Until we saw the OT’s report, we didn’t know that his shoulder muscles were affected. By placing our hand on our child’s hand, we actually give support to muscles that are lacking strength and stability. We also received feedback that he was very distracted and the teacher noticed he was very fidgety. Sometimes he would attract attention by making funny voices or shouting and would end up getting the naughty chair (timeout). All this because he can’t sit upright due to poor postural tone. Bilateral integration and Midline crossing issues come into play when the child has to use both left and right sides of the body like in scissor work, bead work, tying shoe laces. Often if a child isn’t working hard enough or doesn’t seem inclined to do these activities before judging their behaviour, it’s best to check on these underlying factors.

Information is everything– During the 2018 Autism summit, there was an interview with David S. Geslak, the founder of Exercise Buddy http://www.exercisebuddy.com/.He explained that exercise does wonderful things for children on the spectrum. It has been made into an Evidence-Based-Practice that helps autistic children and he had a free 10-day access to the videos on how to execute the exercises. We felt there was so much to be done and from our understanding of the OT activities we decided that we will get our son into an exercise regimen incorporating animal crawls and build muscle strength. We hoped that it will address some of the concerns like fine motor skills by building stability around his shoulder joints and attentiveness by building core stability as it would able him to sit upright in class for longer durations or get through ABA(Applied Behaviour Analysis) therapy sessions with more ease.We understood that physical inhibitions that are not so evident can have behavioural implications.I feel a sense of guilt that I didn’t catch these pointers early on. It’s not just early diagnosis that’s the key it’s also how we understand the diagnosis and what we can do about it, that matters the most.

Exercising our way through. When we started out, we didn’t have gyms that catered to kids. There were group yoga classes and group karate sessions but we needed more one-on-one type intensive sessions. I consider our son’s exercise regimen as not just a practise but as an intervention.  As first steps, we got monkey bars and a trampoline installed in our lawn. We requested my husband’s gym trainer to help us with our child and despite being a trainer for adults he obliged us. My son did 40 min sessions for about two times a week and we saw gradual gains in his core stability. Another important point is that, we had already begun on ABA, GFCF diet and homeopathy before starting on making exercises as part of our son’s routine. It wasn’t a conscious decision but in retrospect it couldn’t have been a better sequence of events. He wasn’t as sick as he used to be before the GFCF diet so we could get him to exert. We got our son’s compliance through the use of ABA techniques. We used visuals to explain exercises so that he transitioned well and was not irritated by too many instructions. In the beginning, most exercises were tough for him and we had to use many fun elements and games to get through them. We then indulged him with tennis, swimming and horse riding. When the kids’ gym opened, he was instantly a member there. Since he had Mon-Fri packed with school and ABA sessions, we had to pack all the exercise regimen into the weekend. This clearly meant more commitment from our side as parents. Then recently we restarted his one-on-one exercise routines again with the help of  the exercise specialist at ‘My World Ahead’ https://www.myworldahead.co.za/services/. What I like about this program is, it is very specific to skills development, and mostly intended for children on the spectrum. The program looks at strengthening his core muscles, increasing stability, endurance, balance, coordination and response times. Even with the Covid situation this is one aspect we haven’t given up on. We do zoom sessions and we participate with our son!

Did we achieve what we set out to do? Yes, indeed and more! Exercising is in general good for the moods. It releases endorphins which help relieve stress and pain. Brain chemicals like dopamine and serotonin are also released which help in the sleep cycles. Our son was sleeping better and sleeping through. We noticed he could focus better after the exercise routines. He does 3-hour ABA sessions without any behavioural issues. We could never have imagined he will sit on the same seat and work for so long in a Zoom session. I have absolutely no involvement and he takes minimal breaks. His confidence in ball skills has increased. His balance, fine and gross motor skills are all in place. His love for hiking is what motivates us to try the difficult hikes. He never complains of being tired and feels a sense of accomplishment when he finishes the hike. He is a confident swimmer when compared to when he started. In the 800m end of year running event at school, he showed his stamina and confidence by being amongst the first three in the entire Grade 1 to complete the run. He knows he can write and is quick at it too so he persists despite his inability to imagine and articulate. His handwriting needs improvement but he can write 2- 3 pages without getting tired. Since the motor skills are better, he can go about his work independently. Before he would need help to fill water from the heavy jug into his narrow water bottle, now he did rather do it himself. Sometimes we find him trying out some stunts on the bicycle and we see stability, control and coordination in play. We know we have come a long way. These may be little achievements but he is proud of them.

Self-esteem goes a long way for anyone and more so for a child on the spectrum. Getting through a normal day is a lot of work. Social interactions are too heavy to handle. We have with exercise managed to raise our son’s self-esteem- the wind below his wings. Rather than be anxious and insecure, this inherent strength helps him stay motivated and happy.

The second plunge

The decision to take the plunge into motherhood or may I say parenthood is usually a very conscious one. Sometimes you know you are ready for it, sometimes you don’t but you still go for it, sometimes it all happens by accident! Readiness of the mind to step into a new responsible role, where you are in your relationship, your career, and the economics are often important factors in this decision-making process.

The turning point. Oh! I missed one important factor- Encouraging relatives!! When I was told by relatives to have my second child, I was always hesitant and I didn’t feel ready. I felt I was struggling as a mother. We had not received any diagnosis and frankly we felt our son just needed more time. I feared that if it is some dominant gene playing out, I may have to go through the grind of tantrums and outburst all over again with my second. However during this period when I was in India my cousin visited with her 4-month baby who was just trying to crawl. My son was 3+ years then and he was sitting a bit away, pushing his favorite little Lightning McQueen towards the little baby and excitedly talking. He even walked right beside me very concerned, while I was consoling the baby. Those moments are still so vivid; his excitement and warmth were something I just couldn’t stop noticing. At that moment I felt I was ready to go through the grind all over again. The expressions of care and concern I saw was not something I had witnessed before. I knew then he would be an amazing brother.

The albatross. After reading my post the- Atypical Calling, I got messages from mothers who had children on the spectrum tell me that they are not finding it easy to take the plunge, second time round. It is too scary; too risky. If it is in the genes; it will show up again! Even if we try and be as positive as possible, the fact that we have to constantly be there emotionally and time-wise for our child with ASD, just makes it a challenging decision. How can we divide our time and energies without feeling guilty all the time? In my case, it was pure luck that I didn’t have to be at such crossroads. I was just into the pregnancy when we recieved the report from OT and eventually the autism diagnosis. The second plunge was done! What followed was quite atypical. I used to google “what causes autism?” rather than do a recap on what to expect in the trimesters! From nourishing food to supplements to keeping away from EMF radiation as much as possible; I tried my best to do everything right. I tried to stay away from everything that would otherwise stress me out. I didn’t go to my son’s Occupational Therapist and I read the assessment report in bits! It was during that time that I actually offloaded my first child and his needs to my husband. At the time our son used to have an average of two tantrums a day and as the pregnancy progressed it wasn’t easy to be near him with all the kicking and hitting. The possible genetic predisposition to autism was like an albatross around my neck. The burden of my elder son’s diagnosis only became more after the birth of my second child. Every milestone of my second son was being tracked. To be sure I didn’t miss anything I got him enrolled into playgroup at 18 months and constantly asked teachers about his development. Though I felt guilty, I enrolled him into an after-school-activity that used all occupational therapy kind of activities and I tracked his progress with the instructor there. We kept him dairy free and gluten free by almost 80% until he was 3 years of age. We gave him all the vaccines but didn’t want to take any chances with the MMR. Whether reports were true or not about MMR vaccine injury we decided to delay this vaccine until he crossed 3 years of age. He will be 4 soon and by the grace of God, is very neuro-typical. I feel a lot lighter now-no burden!

The connect. My elder son has been a wonderful brother right from the moment he had his sibling in his arms. He loves his little brother and finds his anchor in him. He is amazed by his litle brother constantly exploring, questioning, cooking up stories, and wanting to try every food he sees! The presence of his sibling has helped him in more ways than I could imagine. For children on the spectrum lying, strategizing is not as natural as it is for their neuro-typical peers. When the younger one lies to get away with his prank, it is an absolute revelation for the elder one! Understanding social cues and responding to them is another huge issue for my son and we now have enough oppurtunities to expose him with! The birth of our second child was an intervention in itself; I think the best intervention of all and we feel blessed.

Yes, it is definitely not the easiest plunge and the albatross will hang too. You don’t need the encouraging relative nor the skepticism; you only need your instincts to rule you.                                                                       

The Autism Diet

Really? Is there any such thing as an Autism diet? It would be ideal to have a prescribed diet and   recipes for our little sensory and picky eaters. But, as I keep saying in most of my posts, autism spectrum disorder is as broad as the number of children with the diagnosis! So, the reality is there is no one-size-fits-all diet that can take this diagnosis away. However, there is definitely a lot that you can do by just changing up things in the present set of foods that your child on the spectrum is consuming and you will not be able to believe the kind of changes you may see. As always, I will begin with our own example. If you have read my post on Managing Vs Treating Autism, you are already thinking of Autism as a medical illness with neurological and developmental implications and not as a mental illness with nothing else to do. I hope that the post has been a good starting point for you to understand that treating autism is as important as managing it with speech, Occupational or ABA therapies.

What is gluten and casein? We started with treating our child with an intervention which is as non-invasive as it can get, that is the GFCF Diet (Gluten free and Casein free)!! Gluten is one of the proteins in wheat and Casein is one of the proteins in dairy that is cow’s, goat’s or any other dairy milk and milk products. If you research you will read that these proteins are broken down into peptides by our stomach and then these peptides should ideally be broken down into amino acids by our small intestines. These amino acids get absorbed into our blood which then nourishes our bodies. So, gluten and casein are good stuff. However, in some bodies like our kids’ with ASD, this whole digestive process for these two proteins is messed up! They seem to have something known as the leaky-gut syndrome. Gut being the intestines in our body. The small intestines seem to allow these peptides to move into the bloodstream without being broken down into amino acids. And these peptides in the bloodstream make the children react and behave differently. Please note that not all paediatricians will tell you this as this is still in theory or taken as a hypothesis. It takes years to heal the gut lining. We made the shift to a gluten free diet after being extremely hesitant and after pondering over it for almost a year. In that year we only did the ABA or Applied Behavioural Analysis Therapy. I would say that we only managed the Autism and couldn’t get started on any other intervention. I was asked by the ABA supervisor if my son had food sensitivities and she mentioned that his dark circles, redness of eyes and constantly having a stuffy nose could be indicators. Since we had just moved into Johannesburg, I assumed these were environment allergies and was not aware of food sensitivities. He was on a paediatric antihistamine to manage the symptoms.I spent the year absorbing all the information from the DAN, Defeat Autism Now, Dr Woellers Website and then sending our child’s blood, stool and urine samples to the Great Plains Laboratory in USA. We did the Organic Acids Test(OAT), the Metals Hair Test, Comprehensive Stool Analysis and the IGG Food Allergy Test. There are more on the Great Plains Laboratory website, but these were enough to get us started.

The love and cravings for gluten and casein Until the reports came, I was just not prepared to change my child’s diet. He loved Nutella sandwiches, pasta, pizzas and Indian rotis (Indian bread). He would gulp down a whole glass of plain milk with nothing added to it and always made sure he reminded me to give him a portion of cheese every day. He is a very picky eater, and his foods have to be of certain textures or more specifically not a mix of textures! With regards to beverages he only had plain water, strawberry milk shake and plain milk. We would try everything from juices to chocolate milk to variants of milkshakes and have only tantrums and gagging so we didn’t force him. I mostly pressure-cooked vegies and it was blended into rice or mashed into roti rolls. The recipes on Dr Woellers’ website were super healthy, gluten and casein free recipes and I just couldn’t see my son eating any of it.

Implementing the diet..I was hoping to get off the hook if the lab results showed a negative on food sensitivities to gluten and casein. But that was not to be! The graph was clearly off limits. He tested very high on gluten and a little lesser than that on cow’s milk. He tested high on oxalates; he was sensitive to eggs as well. (There was other stuff which needed to be addressed from the other reports but we needed an expert for those aspects.) To us this meant that all of his favourite foods were to be removed. We didn’t have the heart so we decided to do it in phases. We first targeted to being GF i.e. gluten free while alongside we reduced consumption of dairy products. We are now 100% gluten free and it was much easier than I thought. We got gluten free all-purpose flour to make our own cakes, pancakes and cookies, we had gluten free ‘atta’ to make Indian breads, we found gluten free pasta and pizza joints that served GF pizzas. Being from the southern part of India, where rice and lentils are staples, it was easy for me to get back to native foods and slowly we got my son to take a liking to them. Foods like idli and dosa made from fermented rice and batter replaced bread and butter! There was a time when we were going steady with the gluten free diet and on a visit to India, we indulged him with butter naan and butter chicken a favourite combination, for two consecutive lunches and he got sick. He was all stuffy nosed and teary-eyed, and from then on there was no looking back. We never lapsed. There was no room for weakness. We started to teach him what foods he could have and what were gluten free. At school if there is a class celebration, I am informed by the teacher so I can send an extra gluten free cupcake or a favourite gluten free snack that he can enjoy with his peers while they have their goodies. He is now in a position to ask if the food he is being offered is gluten free or not.

The results Around the same time when the reports arrived, our son had a bad upper respiratory tract infection and the entire area was inflamed, before administering meds we had done an IgE test and the indicators were very high for dust mite, for Bermuda grass, certain plants and dog hair. We therefore decided to use hypoallergenic pillows and sheet protectors for his bed. I requested the gardeners to mow our lawn in the morning when he is at school. We took little steps that made a huge difference in reducing his allergies. The doctor asked us to use a non-sedating antihistamine on a permanent basis that will keep him off chronic inflammations. When we got on the gluten free diet, within a month or two, we just didn’t feel the need to use the antihistamine again! It was a very big deal; the ABA therapists were reporting that his focus levels were much more just because he wasn’t distracted by his stuffy nose! Actually, there is more to this. There was something that our son used to do – which is lie on his stomach for a while mostly after eating a meal. This actually is an indicator that something isn’t really right with how he was digesting food. He wasn’t consistent with his bowels either. He didn’t sleep through the nights and with being consistent with his 100%GF and almost 90% CF diet we managed to get his bowels and allergies in control. He still spends a lot of time on grass and outdoors but he doesn’t have the sort of allergic reactions that we saw earlier. Most parents with children having ASD now do the GFCF diet without doing the tests. That’s how good the effects can be. There are others who report they didn’t see changes but I believe they are a really small percentage.

Evaluating the intervention There is something every parent must do before taking up any intervention. It is called as the Autism Treatment Evaluation Checklist https://www.autism.org/autism-treatment-evaluation-checklist/ or more commonly known as ATEC scoring. This is basically a questionaire (which most of us parents are used to filing up) that has many questions on how your child is presently fairing with regards to social skills, speech, cognition and basic stuff like sleep,etc. The lesser the score the milder the symptoms of autism and the higher the score the more the impairment or autism suymptoms. If a neurotypical child is being score most likely the score will be less than 10. So an ATEC score less than 10 means your child has recovered!! As the name suggests it helps us analyse if the intervention a.k.a treatment is working for the child or not? So we score the child before starting the intervention and we score the child again after about a minimum of 30 days of doing the treatment. If the score is lesser it means the child has shown improvements with that intervention else you can choose to wait for more time and score or find a new intervention that ‘clicks’ with your child. This scoring system is very helpful because often the changes are very subtle and we fail to acknowlege or notice them. Like before starting on the ABA intervention my son had a score of 80+ but after 3 months of ABA he had 56. After implementing the GFCF diet for 6 months, we were down to 35. The ATEC is my best friend. It gives me hope and keeps me on my toes. We continued further with other interventions and we are now down to 28 and yet 10 seems so far!

What to watch out for? .While going on the GFCF diet it is very important to note the ingredients on say the GF flours or GF pasta. If it is mostly corn based, its best to stay away from them as corn these day is mostly genetically modified (GMO). If you are able to source GMO-free and organic products it would be healthier options. These days more lentil-based gluten free products are available which an be better substitutes. Along with gluten and casein sensitivities, there are foods that are high in salicylates, histamines and oxalates which the children aren’t tolerating well. If the child is on a GFCF diet but is also taking foods rich in any of the three- salicylates, histamines and oxalates, you will see mood swings, out bursts and inflammation. If you are unaware of these factors you may assume the GFCF diet isn’t working! Histamine and oxalate tests are also available these days so based on that you will have to eliminate or at least reduce their intake. For instance, we took our child off spinach and used tomatoes, almond flour and almond milk moderately as they are high in oxalate. Google can easily provide you with the oxalate, salicylate or histamine food lists. Also say No to additives, preservatives, MSG, and food flavourings and colourings. The website  https://nourishinghope.com is very informative and is mostly intended for parents who have kids on the spectrum.

When will he ever be off the GFCF diet? I don’t know. I can only conclude by saying “It’s a diet worth all the troubles and the food we eat is what we are. What our kids can be is therefore in our own hands.”

Our Tryst with ABA

Before we deep dive into this subject, I want to alert you that this is going to be a long read. It will be better with a cup of coffee or tea perhaps! I will start with a refresher on the phrase “carrot and stick”. In our growing up years, I think we got a lot more stick from our parents than carrots when it came to being productive at school work or other tasks that required us to be fruitful! Ring a bell? Yes, carrots = rewards and stick =punishment! I think parenting has evolved to be more mindful and sensitive about the exposures that children have these days when compared to earlier. So, as parents we walk on a delicate balance of managing rewards and enforcing consequences (the word punishments seems so archaic now). We are mindful of our children’s interests and desires. We try to inculcate good healthy practices so that children are motivated from within to do everything right! However, that’s an ideal scenario and every day is not going to be ideal isn’t it? So, may I say we still resort to the carrot and stick principle as it gets us through the day?

With that perspective, let’s dive into ABA or Applied Behavioural Analysis Therapy. It is one of the evidence-based therapies that has existed for a long time. Simplistically speaking, it is about teaching the autistic child the skills that they are lagging in, with respect to their peers. They include every skill you can think of-fine motor, gross motor, visual tracking, cognition, comprehension, executive skills and many more. In our case they even taught my son to gulp down capsules and from then on there were no more struggles when it came to administering fever meds or supplements.

Some of the skills are taught at school by teachers too, so why is ABA required?        Firstly, this is a one-on-one therapy and mostly requires a lot of ‘repetition’. Every little thing taught is repeated till its ‘mastered’. So if the child has very weak fine motor skills, the therapist will begin teaching in small steps with different ‘prompts’ as in first by helping completely-say hand on child’s hand, then slowly just having hand on child’s arm and then may be just put the hand on the shoulder and then just no help at all or ‘fading out’ the prompt completely. This is sort of like how you will aid a one-year old child to walk. But for every step above, the child will do multiple repetitions and for every good attempt or a set of attempts as the case may be, will get a ‘reinforcer’. Yes! Reinforcer= Carrot which is basically anything the child loves most at that point in time. ABA is based on the premise that reinforcement of the correct behaviour will increase the occurrence of that behaviour. Why all the repetition? Its not because our kids aren’t intelligent but their grasping power has been affected by various underlying conditions that would best be addressed in another blog!

Can a parent be an ABA therapist? Sure why not! If the parent understands the importance of structure, is well-versed with the techniques of ABA like token systems that help obtain your child’s compliance, has plenty of patience, can devote a good amount of time, is able to make the required resources which include all kinds of visuals and aids, is ready to get work done even if the child is having a bad day and has the tool enlisting the comprehensive age related skills you need to teach the child, it is definitely possible for you to turn therapist. I somehow couldn’t see myself justifying that role, so we took help from an academy which provided therapists trained in ABA.

ABA status in our household. Before we started ABA intervention, when our son was 5 years,we had approached a premier school and the admission was denied with a suggestion from the principal that we should try a remedial school first but we were not in favour of a remedial setup and we began ABA instead while he still attended the preschool near home. Within 8 months into ABA, I again requested the principal to consider my child and he and the counsellor were very surprised by the growth. They were doubtful but decided to take my child into KG, and asked us to have the ABA team facilitate him in school and it’s been 3 years since. There has been tremendous growth; this year in Grade 2, when I saw him comfortably multiply with 2-digit numbers, I was reminded of the days when he struggled to use his fingers to do simple addition in Grade 1. There are areas of concern but he can now work independently and facilitation in the classroom is slowly being faded out.

Our concerns about ABA   1:Initially I found it difficult to trust the process and the therapists.  2: I felt it was crazy that my child had to be given lollipops or smarties (something like M&M) for say, just writing a letter A. Will he be always dependent on external motivators?                                                                                 3: I was afraid they will fail to see my son as an individual. He may be a child on the spectrum but the autism spectrum disorder is as broad as the number of different children diagnosed with it so each has a unique personality.    

Measures taken. While I write about what measures we took to address the concerns, I thought it would be nice to blend in some ABA jargon as well.    (For concern 1) I talked to the therapists constantly and it got easier to trust them with my child. The client- therapist relationship was more on paper and we worked like a team. The supervisor of the team was an incredible young lady with good amount of experience and an expert at her job. She recommended the website- Institute for Behavioural Training (https://www.ibehavioraltraining.com/ibt/parentelearning).  Completing the online training modules, not only helped me understand autism and ABA better but how my son needed things to be. It helped me understand and gain confidence in what the therapists were doing with my child, how they set expectations with him and handled him. I ensured that my husband and I will provide a sense of sameness by following similar strategies in our day to day interactions with him. It is important to note that most kids on the spectrum love structure, pattern, routines and rules. They thrive well if things are familiar. They feel safe and self-assured if they know what to expect. After doing this training,I got myself a printer and laminator and we had reminders and visual schedules all over the house. There was an automatic decline in tantrums and as parents we felt we were back in control.  The team lead would always give me a quick tip or two whenever she frequented my home. While, I could approach the team for advice, my suggestions were also well received.    With regards to using the stick, they followed guidelines and always kept me in loop if they had to bring in a ‘consequence’. A full update on what happened and activities done, was communicated after every session. This helped because in the event of my son losing his reward, we would need to be prepared for all kinds of unregulated behaviour. ‘Response cost’ a technique where rules and tokens are set; child loses tokens if rules are broken and if tokens are still remaining on completion of task, the child gets his reward. I saw this as a beautiful visual indicator for my son on how his actions can take his reward away and conversely how his actions can get him his reward.  We must remember that these techniques cannot be seen as merely training a child to react but being a visual indicator, this technique aids the child. Our children with autism spectrum disorder have challenges with auditory processing – either they can’t follow multiple instructions or they tune out information. So, if we go the usual route- constantly giving reminders about rules to work efficiently or even talking a lot while teaching can actually burden the auditory related processing. So, these consequences help get more compliance and children learn more quickly.  

(For concern 2) The biggest concern was regarding the premise of ABA which is the use of external reinforcers like 10 min of favourite videogame or cookies or a lollipop or chocolates as rewards for doing tasks. Will he ever be motivated to do a task without rewards? Will he ever do anything without wanting rewards? This is also what the ABA controversy is about -Are they training our children like how one may train a dog to do tricks? What kind of individual will my child grow up to be- someone who looks for constant external motivations to do tasks? I choose to talk about this with only my child’s experience as a reference. The team of therapists we had, were trained from an academy that complies with the C.A.R.D (Center for Autism and Related disorders) rules. It is an organisation that ensures therapists don’t just do their own versions of ABA rather stick to the guidelines. This team of therapists was able to win my child’s trust and mine. They continuously brainstormed for reinforcers that were healthy for his growth. They also did their bit in weaning-off the reinforcers that I wasn’t comfortable with. They used his obsession for a toy ladybug to teach about ladybugs, they made token systems and games around ladybugs. They used baking, board games and fun physical activities to teach language and academic skills. Today, especially after the COVID situation, where I have to help my son finish his school work, I can safely say that he is not dependent on rewards(carrots!!) to do tasks. Like his peers he is motivated by his interests and has the urge from within to do better.

(For Concern 3) Our child means the world to us and we want everyone to see him that way too. We want that his individuality is not compromised irrespective of what the guidelines of any therapy is. I believe that any form of therapy cannot be bigger than who it is meant for. So, if something needs to be bent/ customised to my child’s needs then it should be. At least that’s how my thinking is. The supervisor tailored my son’s learning program to cater to the demands from his school while still keeping sight of the gaps in my son’s growth and development. Even though team members changed, I made it a point to let them know who my son was. I created a document that I call “team induction bootcamp” that they got to read before they worked with him. I feel this helped them understand my son’s personality and get onboard quickly. They also taught skills on the go. It wasn’t like my son was always seated on a chair to be learning! Infact it wasn’t just the “classroom” but our entire home and its premises that were used to run sessions. It wasn’t easy days but in retrospect it helped the therapists do their task with a more compliant child. They were flexible enough to give him some control on how a session would play out like he could say the order of the activities and the breaks. It is possible that not all ABA therapists are as accommodative and flexible to the way you want your child to be dealt with. We got lucky with our team of ABA therapists who were very loving and caring and that’s why I say this- ‘Our tryst with ABA’! An effective intervention is one that doesn’t use the one-size-fits-all appoach.

There are some concerns raised around how ABA tackles kids who stim (flapping of hands, spinning objects or other repetitive actions). We didn’t have to deal with this aspect as our child didn’t stim. However there was a point where my child’s obsession for a particular button-sized ladybug toy was hindering his ability to focus and when the therapists were trying their best to keep it away during the sessions with timers or ignored his repetitive talk about bugs, I did intervene and asked the team if we could indulge in his obsession instead, -basically acknowledge everything about the bug-talk and move on with the task. I was reading the book “Autism Breakthrough” by Raun K Kaufman at that time. This gentleman has been cured of his autism by the interventions used by his parents who later went on to develop the Son-Rise program. This program is for parents who want to learn how to manage their child’s autism. They believe that by indulging and truly enjoying what the child loves to do (even if it’s the most ridiculous thing) you will be able to find a way into the shell that your autistic child has created around himself and from there you can lead him out into the typical world. Basically, it focuses on building a relationship with your child. Their premise is that a child’s learning can take place only in a safe and fun place within the context of a social relationship. I realised that the more we indulged our son’s perseveration or obsessions the more he engaged with us, the more he communicated and eventually the obsession lasted for a lesser period of time. I think this was because he felt reassured that he was being heard and we took interest in what was important to him. In all autistic children some aspect of their social skills is not developed. If it is not developed naturally, to teach it would be a herculean task. So for those parents who don’t see eye-to-eye with ABA, I suggest looking up the Son-Rise program at https://autismtreatmentcenter.org/ as well.

Controversy or no controversy, I believe that it is not the means (ABA or the Son-Rise or Floor-Time or Play therapy) we use but it is how we execute it that matters most. Are you just going to be a bystander expecting the therapists to do their job and you do nothing beyond their sessions? Then you will also see that the progress is limited. The more actively you participate -time wise, emotion wise, information-wise; the more will be your returns.

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.