Managing my child with ADHD made me think about resolving issues parents of children on autism spectrum face
He was 2 years old when I realized he didn’t respond to my call unless I used a ‘stress’ word. The diagnoses followed and I was told that my child had ADHD. He didn’t focus on any one activity for long and was fidgety. At the same time, he had very clear and evolved communication. Most of my time was spent on managing my child who would mostly resist whatever was asked for. For a parent who had had a late child and had relinquished her career with dreams of raising the most brilliant child, it was a definite setback! One can deal with roadblocks through hard-work but find it impossible to manage indifference and defiance. My child refused to study or eat healthy or engage in any activity that I knew was essential for healthy childhood. While I tried making sense on my own of what was transpiring, I also realized the need of professional help of occupational therapists and special educators.
It was at the therapy centers that I got exposed to the different facets of autism spectrum. There were children who couldn’t speak clearly, and sometimes not at all, even at the age of 5. There were those who had never called their moms, ‘mom’! The children on spectrum were easily disturbed with slightly above normal light, sound, and while some others were extremely sensitive to others’ negative facial expressions (Yes, some are excellent at reading expressions!!). No, one can’t be angry or rude in their presence! They get impacted. There were children who couldn’t communicate their most personal needs, leave alone use toilets on their own. Yet, the moms would promptly observe and trudge the child to the toilet, along with the huge task of cleaning and washing ahead of them.
My child was my absolute focus and I soon realized that none of the other moms would accept any less either. All were engaged in enormous balancing acts, adjusting and sacrificing all that once defined them. Looking after a child with autism is a 24×365 commitment!!
Questions of my own wellbeing became questions for the concern for all ASD moms – How long will she sustain this zeal? Is this a satisfying responsibility? What’s her biggest concern? What are those things that will bring some respite to her? What can be done so she can get some rest? Will she ever have a normal career? What will a single mom do if she has a child on spectrum? Do people have resources to care for a disorder that lasts a lifetime? How does one provide dignity and esteem to children on spectrum and their parents? These were some questions that haunted me.
Thus, was birthed BloomBuds – an initiative to create an accepting environment for ASD children and as importantly, for the moms and dads engaged in this unrelenting journey to care for their most precious. After 5 years of intense observation, research and diligence, we are in touch with a large community of parents and caregivers in several countries, sharing their daily concerns about autism spectrum disorders. We have now designed a holistic program that could bring a sea change in the way autism is currently managed in India. We are BloomBuds parents!!
Monica (Managing Editor) is the quintessential researcher - she thrives on showcasing overlooked aspects that form the foundation blocks of people, places and issues. She is a social scientist by profession with masters in Economics and loves to travel.