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Sanjana’s Journey

As told by her parents

Our daughter Sanjana was diagnosed with a rare chromosome disorder at five. At around two and half years she took her first steps, and her first words were only after she turned 5. Despite intensive Speech/ OT/ PT, her milestones came painfully slow.

In the following years, she went through inclusive schools; and by the time she was fifteen started attending a pre-vocational skills center. Her pace of progress was painfully slow, but steady, nevertheless.

She was still not reading or writing without substantial help. The snail-paced progress and constant repetition were tiring us both out. It also affected us emotionally, not just physically.

When she was around seventeen, a compassionate fellow mom shared with us about her experience with NACD. We promptly went online to read details and case studies, and with a lot of hope in our hearts, contacted the NACD team.

After the first evaluation, we realized we were working truly hard to teach her, and she was working very hard to learn—but her brain was not ready for any learning! Her processing was at an extremely low level, and it was as if we were simply barking up the wrong tree.

Then came the program. At that point, I was also running a full-fledged design studio and had my hands full. I kept thinking about how I was going to implement this with our already overflowing schedules. But hope is powerful. It makes you stretch and do things you may not think you could do otherwise. We started the program, and just then covid hit India. Suddenly I was at home all day, her Center went online, and I could see her learning and her struggles, and we could manage our time better.

After regular rhythmic work daily, we saw growth pace had picked up. We saw that the otherwise snail-paced progress changed to seeing significant change every 4 months. Her processing level went up substantially and so did her learning! Improving her processing and acing the math facts gave her a much-needed base to proceed further. The reading, which was an activity she would dread and despise because of her intense struggle to perform the activity, changed to her enjoying the process. She still needs help to read, but it is with less struggle, more willingness and joy.

I now realize the value of a home program and chose to sell my design studio to be more available for Sanjana. While she is progressing well on the academic path, what helped us most is NACD’s focus on chores, independence, and skills. She’s independently doing many chores at home, picking up most skills needed for independent living.

We honed her love for arts and crafts into being a soap artist. She makes lovely natural artisanal soaps which we help her sell through her website www.thebluelephant.in. She’s independent in making soap, inventory logging, and many other tasks around it.

However, her biggest love is coffee and food☺. She is now a trained barista who makes amazing coffees and is currently pursuing a baking course. Her coffees are popular in the neighborhood, and they often drop in or order her coffee on weekends. Her signature is Orange Coffee!

We are constantly looking for creative ways to build skills in the most normative ways possible. Towards this, Lyn, our coach, gave us a fabulous idea to implement a home economy system where we transact at home to buy food and coffee, etc. This is slowly building her confidence and literacy around money.

In recent times, everyone who meets Sanjana can’t help but notice the change in her confidence, communication, comprehension, and independence.

As parents, what boosts our morale the most is the increased pace of progress and her ability to manage emotional outbursts. There was a time when meltdowns were frequent and would turn violent along with crying and screaming. Now not only have they dramatically reduced in number, but they are also more manageable. She can communicate even through those difficult moments and self-regulate to an extent. It is such a huge relief that they are no longer moments of insanity.

Lyn, our coach, and the team have just been phenomenal. Her advice and motivation keep us going on the right path. We are blessed to have them in our lives. Blessed to have found this wonderful program—NACD. And blessed to be able to hold this wonderful dream for Sanjana’s future of her living an independent, dignified life.

            • Reprinted by permission NACD Newsletter, July 2023 ©NACD

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