“I’ve learnt to take life because it comes,” Sejal Shah tells me after I ask her how she navigates the ups and downs of life whereas mentioning Viha, her 23-year-old daughter who lives with a number of disabilities and traits of Autism.
The Mumbai resident appears to have unshakeable resolve as she talks about embracing life as it’s, powering by challenges day-after-day, and the learnings she has had since Viha’s beginning.
From Viha’s early years till 2009, Sejal’s routine was fixed, to say the least. Each morning the 2 would make their solution to the Helen Keller Institute at Byculla, Mumbai, the place Viha can be educated within the nuances of fundamental expertise, talking, interacting with others and day by day duties.
Owing to her disabilities, Viha had by no means been admitted in a mainstream faculty. The Helen Keller Institute was her ‘house’.
However this was about to vary. Because the institute knowledgeable Sejal that day, it might not be capable to proceed serving to Viha past the age of seven. If Sejal was eager to proceed Viha’s particular schooling with them, she must transfer her to the Vashi department.
“Travelling to Vashi day-after-day with a disabled little one isn’t conducive,” Sejal shares.
However what she noticed as a hurdle on the time turned out to be the greatest milestone in Viha’s — and her personal — journey. The dilemma of how she might proceed Viha’s schooling led Sejal to talk with different dad and mom whose children attended the institute and had been additionally aged seven.
She wasn’t alone in her considerations. They, too, wished their children to have entry to particular schooling in shut quarters.
It’s why in 2009 Sejal joined arms with different dad and mom to type Mariposa Basis, situated on Grant Street in South Mumbai. That is the dad and mom’ endeavour to assist their disabled youngsters to proceed studying, rising and having a protected house.
Having mentored over 25 youngsters with numerous disabilities Sejal says, “The teachings simply preserve coming.”
She shares these with The Higher India.
1. ‘One strategy doesn’t match all’
On the Mariposa Basis, no two children are the identical by way of their incapacity or the way in which they address it. Whereas one little one wants assist with a process so simple as brushing tooth, one other wants assist with artwork. “They belong to completely different age teams and are at completely different phases of their particular person journeys,” Sejal says, urging that folks ought to preserve these individualities in thoughts after they information their youngsters.
2. ‘The main target shouldn’t be on teachers alone’
After Viha was born, Sejal took her justifiable share of time to return to phrases with the physician’s analysis. “It’s regular,” she assures different dad and mom who could undergo the identical factor. “However you will need to make peace with it.”
Taking her personal state of affairs for instance, she says she realized early on that Viha doesn’t want teachers, however as a substitute coaching in day by day practical duties.
“Don’t measure your little one’s progress by way of levels.”
3. ‘Perceive your little one’s growth’
As youngsters filter in by the doorways of Mariposa each morning, there’s usually a brief alternate of phrases between Sejal, who’s ready to welcome them, and their dad and mom. These transient interactions open her eyes to the bonds that completely different dad and mom have with their youngsters.
And if she might say one factor to them, it might be to be gentler with the kids.
“Disabled youngsters evolve in another way with respect to the modifications occurring of their our bodies and the way in which their brains understand issues. As dad and mom, all we are able to do is perceive and settle for.”
4. ‘Allow them to categorical themselves. It’s stunning’
A heartwarming sight greets anybody who enters the muse at 1 pm. All the kids sit in a circle singing songs, saying prayers and reciting poems. The exercise, aptly known as ‘Circle Time’, encourages the kids to work together with others and categorical themselves in a approach they know greatest.
Sejal shares how pretty it’s to observe them say “hiya” to one another or greet their buddies earlier than they proceed to do the different actions with their mentors, who’re with them all through the day.
Sejal’s methods of interviewing her potential mentors and volunteers is exclusive. Bypassing the same old questions on {qualifications} and ebook data, she asks, “Are you prepared to like these children the way in which they’re?” This and a week-long statement kinds the bottom for hiring.
Elaborating on the benefit of this follow, she shares, “When coping with disabled folks, what issues greater than being nicely versed with textbook phrases is the way you work together with them and the tact you employ.”
5. ‘You’ll be taught to have unimaginable endurance’
There are occasions when Sejal teaches Viha a easy process, and Viha doesn’t choose it up instantly. Typically, weeks cross by earlier than she reveals indicators of progress. “However that’s fully okay,” Sejal argues. She encourages dad and mom to not lose hope, as she agrees it may be demoralising to coach your little one in a process and go months with out seeing constructive indicators of recall.
“In instances like these imagine that your little one is studying. The day will come after they show that to you.”
6. ‘Adapt your strategies of educating’
So as to add to the earlier level, Sejal advises dad and mom to change the methods they’re utilizing to show their children day by day expertise. “Some days I attempt music, some days I attempt artwork, and different days merely love,” she says.
7. ‘Decelerate’
“When Viha is taking time to chew, I can’t inform her to rush up as I’ve one thing else to do.”
Sejal provides, “I’ve to attend till she has completed.” These and different experiences have taught this mom the artwork of slowing down in life and of taking every second because it comes.
8. ‘Unconditional love exists’
When Sejal is having a nasty day, she doesn’t assume that Viha will perceive that by her behaviour. However generally Sejal is shocked by how Viha will come to her and simply keep nonetheless, as if displaying her she isn’t alone. Sejal says the dynamics of emotional bond between disabled youngsters and their dad and mom exist — they simply could also be completely different.
“That to me is unconditional love.”
9. ‘Don’t count on’
Hardly ever do ideas like “Will Viha look after me in my outdated age?” or “What does the longer term appear to be?” cross Sejal’s thoughts.
She says she has come to imagine that she must be sturdy and reside a life with out expectations. Though these questions are regular for any mother or father to have, Sejal factors out that issues change when you’ve a disabled little one. “You may’t reside with expectations for the foreseeable future. You are taking life because it comes.”
10. ‘Blanket recommendation is of no assist’
When dad and mom of disabled youngsters share their struggles with Sejal, she empathises however doesn’t dish out recommendation on how they need to be doing issues. “Households are completely different by way of the ethical assist they provide the mom or the type of consciousness there’s about incapacity… I really feel blessed to have the ability to run a centre and advocate for what my daughter wants. However I can’t ask each mother or father to do the identical.”
Edited by Divya Sethu
