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!

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