A personal journey of understanding and growth by Gouri Ganti

Read Journey through Neurodiversity: Embracing Autism, Learning, and Leading with Love part 1

Key takeaways:

● Listen to all – do what works for you and your child.
● Surround yourself with experts as per your child development need
● Set goals – prioritize what is that you want for your child to focus on .
● Find experts who alingn with your goals.
● Start basic body hygiene skills very early and keep doing it regularly.

Following Dee’s lead gave me the list of things that worked for her. At the same time it also
helped me build on the list of things that were absolutely non-negotiable for her. Initially that list was a physical one and eventually, over time it has become more intrinsic in nature. For example– pure cotton / modal or hosiery material garments are all that Dee prefers to wear. Silk/ pattu
clothes are not her thing!
She prefers t-shirts instead of button down shirts. She wore orange Crocs for 4 years in a row!
Hence,I had to find her the same color of Crocs with every change in size of her feet! These things were some of her non-negotiables.
While I had well-wishers and family giving me advice and even gift Dee with all kind of garments and shoes to get her used to “traditional wear,’ or getting her used to more than Crocs’ I learnt to listen to everyone but also only did whatever worked for Dee’s sensory requirements. Something that was comfortable and safe for her .

These decision-making abilities were rooted in two things.

●The first one was surrounding myself with experts who were best suited to Dee’s developmental needs vs the benchmarked goals.
●The second was keeping myself constantly updated about various vital topics related to autism and sensory integration.
●This involved a lot of late nights, numerous Google searches and tons of pages of reading
material on top of attending effective training sessions both online and offline!

It didn’t end with this! I also invested in being a part of support groups on Whatsapp. I’m not much of a Facebook person, so I never explored that medium to the fullest.

After failing miserably 3 years at 3 different schools and in 2 different cities,we realized that it wouldn’t work this way. Traditional school was getting stressful for Dee as she saw that she was not included in the classroom or outside. It was heartbreaking to see her crying and having a sensory breakdowns everyday.
My focus was no longer academics
but taking one thing at a time.

●The first target was to improve her motor skills and body
awareness with the help of occupational therapy, rhythm and movement therapy, physical full-body movement activities.

●The second target was to understand her sensory triggers and learn ways to regulate them.

As I understood that unless she had a way around her self-regulation of her sensory needs the learning from the environment or from teachers would not happen organically.
For me it was imperative to teach her in a fear-free environment. There was a lot of mockery from friends and family. I would cry alone or in front of Dee’s therapists but never give into the pressure of what someone else was thinking of “our journey”.
I followed my gut and followed Dee’s lead. That probably was the smartest decision I ever made as that is what translated into a happy and well-settled child.

My kid started academics at the age of 9 and it was a conscious choice to do so.
Another vital area of interest was to teach her daily living basic activities and body related hygiene activities and make her independent.

The first few in the space were :
● Independent Eating ( as per child’s guy requirements or sensitivities)
● Independent Toileting
● Assisted or independent -nail cutting ,hair cutting,bathing and brushing.
● Ability to ask / take regular Sensory breaks
It took me the better part of a year to teach her to eat rice with a spoon and almost another 3 years to work through her oral sensory and dental issues.
During this time we were consulting an expert in OPT ( oral placement therapy) and we practiced all the exercises recommended by speech therapist along with occupational therapist.

So yes, working with an expert while laying out your needs vs a child’s ability to pick skills and doing the work at home as a primary caregiver has been key to our improvement journey. It has not been all rosy but it has been a movement towards progress!

Author Gouri Ganti, a mother and Founder of Maasi Group