Monday, March 23, 2015

Letting go

By Madeleine Greey

“Okay ladies, here’s your homework. Figure out what you’re willing to let go of. Make a list. Then prioritize it over the first year of your daughter's independence.”


I looked over at Margaret and her jaw hung in awe.

I locked eyes with LIGHTS senior facilitator Laura Starret who had just dropped this bombshell. She returned my glare with a happy little smile that said “Good luck with this one!”

It’s that happy little smile that kept us going.

Margaret and I—two single moms—had signed on for a momentous task: assisting our adult daughters into supported independent living.

My daughter Krystal, 25 (above right), has Down syndrome. Her roommate Karen (above left) is 26 and has Kabuki syndrome. Both young ladies are bright, able, courageous and developmentally delayed. They knew they wanted to move out of home but couldn’t do it alone. Via LIGHTS—a program in partnership with Community Living Toronto
that supports innovative housing options for adults with intellectual disabilities—our two families connected and figured this out.

LIGHTS is dubbed a for parents planning independent living for their adult children and on a cold, winter evening last year, Karen and Margaret, Krystal and I, all found ourselves at a LIGHTS meeting facilitated by Laura. In fact, we collided on a bulletin board. Each of us had placed a neon-coloured stickie on the “ready to move out in six to 12 months” section.

Krystal and Karen had attended the same high school and while they weren’t really friends, those stickies got them wondering if they could be roommates. They wanted so many of the same things, like a downtown, east-end apartment with laundry facilities that was walking distance from the subway and grocery shopping. Plus, they wanted a third roommate who didn’t have an intellectual disability but was their peer—someone who could be a role model and mentor and was interested in getting free rent in exchange for about 10 hours of support every week.

How did they know this you might ask? The answer lies in umpteen LIGHTS meetings, incessant planning and lots of visualization. 

Pragmatic and impatient, I found this process maddening, but did manage to spot magical balloons of progress float and pop along the way. Laura knew just what to say to get both of our daughters talking—unleashing a torrent of ideas, fears and dreams that neither daughter would have felt comfortable sharing had Margaret or I piped in. We all learned to listen and wait, until that fateful day in June when it was time to start hunting for an apartment. became our best buddy. An aggregate search engine, PadMapper provides listings in the neighbourhood of your choice. We got to know the rental market quickly. Seeing the apartments made it less abstract for Krystal and Karen who were better able to say what they liked and didn’t when standing inside the real thing. The more we looked, the better we knew what we wanted.

Laura had warned us that the process would jump into second—if not third or fourth gear—once we started hunting for an apartment. Margaret and I were quickly overwhelmed with rental applications, negotiating leases, credit checks and securing tenant insurance. It was a steep learning curve that landed us a lease on September 13th for a three bedroom, renovated duplex apartment a block away from Woodbine subway station. It seemed only apt to call it KK House (in honour of Krystal and Karen).

But KK needed their third roommate before they could move in. We started an active email campaign posting our ad throughout the disability community, U of T Housing, plus colleges offering disability studies or support worker programs. CVs began to roll in and we conducted half-a-dozen interviews at the dining room table of the yet-to-be furnished KK House.

Maggie, our chosen mentor, is a York grad student with no background in disability. She's into theatre and English and is a dramaturge and playwright. She found out about the job through her church.

On Halloween, Krystal, Karen and Maggie moved in. They doled out trick or treat candies to their neighbourhood’s little goblins and started to get to know each other over dinner. Boxes were unpacked, milk and butter went in the refrigerator and posters went on the walls. Margaret and I had done our homework and knew what we were ready to let go of. Everything was planned out but nothing had been put into motion until that night.

Of course, things were bound to happen once the independent living began. The smoke alarm went off, the toilet handle broke and there were squabbles over what was shared and what was not in the kitchen. Both Krystal and Karen expressed freedom from “The Tyranny of Mother” in private and individual ways.

We all expected some bumps ahead.

But what we didn’t foresee was the power of dinner together. Maggie, Krystal and Karen had agreed to planning, shopping and making three budget-conscious meals together per week. While brainstorming over recipe ideas, delegating shopping errands and manning the stove, the three have become a family learning a lot more about each other than food preferences.

Two poster boards went up in the kitchen: a monthly calendar where everyone entered their commitments outside the house and a big white bulletin board announcing the week’s meals and menu, along with quick questions and reminders to one another.

Maggie deftly straddles the dual role of mentor roommate and contracted employee/tenant. She has learned to recognize and mentor Krystal and Karen’s varying needs without becoming a caregiver. In other words, she shares a home with them, offers guidance and leadership, but has her own busy, independent life too. Margaret and I meet with Maggie weekly or bi-weekly to review, plan and strategize. All of us have come to realize that regular and thorough communication is the oil that lubricates this machine. Whenever there’s a problem, we all try to talk about it, no matter how uncomfortable and while we don’t always find instant solutions, progress is usually made.

Back to the homework Laura assigned months ago, that business about “letting go.” It’s been the single most difficult part of this project, hurting more than any one of those airless, suffocating budget meetings or the packing up of Krystal’s childhood bedroom and putting it in a moving truck. The grief ran deep and terrified both of us, bringing up painful memories of her father’s death five years ago.

Parenting a child with a developmental disability is one hell of a job. We invest years of pain and joy in the process and letting go of it doesn’t just happen because you complete your parental homework—or not. Every time my daughter accomplishes another independent task, be it turning off the smoke alarm or taking pride in a meal she prepares, I can let that thread between us fall a little slack while knowing where the real bond lies.


I wish that so many that so many programs and services weren't divided into the categories of "Globally Delayed" or "Physical Disability". For, some challenges may differ, in terms of care, but several daily needs remain the same. We all share this planet.

Great Story!

Matt Kamaratakis

Agreed Matt! That drives me crazy. I believe it stems from the division in funding -- but that division is also problematic. We need to be coming from the perspective of people!

Way to go KK! I am so proud and happy for you -
and of your moms also! Love Linda. -I am going to send you my favourite mac and cheese recipe (from my mom).

All of you have so much to be proud and happy about! Just look at what you've created! I've seen you all work so hard for your collective dream - and it's paying off! This is just the beginning - never stop reaching for the stars...there's so many up there with your names on them! Everyday is a pleasure walking this journey with you - thank you ladies!!

Fabulous! Kudos! This also shows the importance of supports such as LIGHTS to help individuals and families move forward. How can we reproduce this LIGHTS process in other parts of Ontario?

Thanks Madeleine. You have captured our story so well. I feel so grateful that we (Krystal, Karen, Maggie, Laura, you) have taken this journey together. Everyone has been wonderful to work with.

To Amy Baskin's question (above)...LIGHTS is happy to share our blueprint with agencies in other communities. We encourage agencies to contact us and inquire how they too can get started supporting families using this successful model!