In this powerful and eye-opening episode, Valerie reconnects with Ishan Manerikar — a witty, fiercely independent 24-year-old student living with Spinal Muscular Atrophy Type 2. Diagnosed at 18 months and raised alongside a younger sister who also has SMA, Ishan grew up with a family who encouraged independence at every turn — even when it required a little ruthlessness.
At just 18, Ishan made the bold decision to move out of his parents’ home — not into a group setting or institution, but fully on his own. Now living in an accessible university residence, he manages his own care team, juggles a psychology and philosophy degree, plays power hockey, and navigates daily life with equal parts strategy and sarcasm!
This episode offers a rare flip side perspective — not from a parent advocating for independence, but from a young adult with a disability who demanded it for himself.
Key Topics:
-Understanding SMA (Spinal Muscular Atrophy) Type 2 — Ishan breaks down the different SMA types and how modern treatments have shifted life expectancy and expectations.
-Growing Up Independent (Whether You Want To or Not!) — How his parents fostered capability, confidence, and competitiveness between siblings with disabilities.
-Why Moving Out Was Never Not an Option — Even when few peers with his level of disability had done it before.
-Finding & Managing Caregivers — How he recruits support workers on Kijiji (with hilariously honest ads) and why he prefers hiring people with little to no medical background. (See Transcript for full ad)
-The Housing Dilemma — The harsh realities of finding accessible housing on a budget — and why student residence is currently his lifeline.
-The Hidden Cost of Independence — The emotional realities of living alone, the isolation that comes with autonomy, and the limitations of government support programs like AISH.
-The Broken Support System — Candid commentary on navigating healthcare funding, caregiver limitations, and why “playing the game” determines survival for many adults with disabilities.
-Independence can be empowering and isolating at the same time — both truths can exist together.
Final Thoughts from Valerie
· This episode is a raw and real reminder of why I do the work I do with Forever Home Consulting. Parents need guidance — yes — but young adults like Ishan also need agency, dignity, and pathways to chart their own lives.
· If you’ve ever wondered:
· “But will my child really want to move out? And what would that look like?”
· …this conversation gives you an answer — straight from someone who’s living it!
Live with Intention - Embrace the Journey
Connect with Ishan
Facebook: https://www.facebook.com/ishan.manerikar
Instagram: @man_in_a_car
Connect with Valerie
Music Acknowledgement: Audio Coffee - Denys Kyshchuk
Editor: Scott Arbeau
Link for book: The S.H.I.N.E. Principle: The special needs mom's path to strength, hope and happiness by Valerie Arbeau
https://www.amazon.ca/dp/B0CW18ZXGX (Canada)
https://a.co/d/03hFdZI4 (United States)
Learn more about your host at:
https://coachingwithvalerieanne.com/
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