Tuesday, 8 May 2018

CELEBRATING DISABILITY MOMS THIS MOTHER'S DAY


I am delighted to host this guest post by Dr. Yona Lunsky. Dr. Lunsky is a Clinician-Scientist in Adult Neurodevelopmental Services and Director of the Health Care Access Research and Developmental Disabilities (H-CARDD) Program at the Centre for Addiction and Mental Health. She's also a Professor in the Department of Psychiatry at the University of Toronto. Yona is all those things, but she is also a sibling of a beloved sister who has developmental disabilities and she is a daughter. This is Yona's Mother's Day reflection on her own family and on the role of disability Moms everywhere. 


Through my work over the past several years, I have had the honour of getting to know many mothers of youth and adults with developmental disabilities. I hope we can celebrate these mothers this mother’s day, for their creativity, passion, persistence, and wisdom as well as for the love that they give to their sons and daughters with disabilities. But in this blog, I would like to celebrate my own mom, and by doing so, celebrate mothers like her, who helped to create the fertile ground for moms of today to further push the envelope and lead to change. 
My mom would not describe herself as a leader or an expert. But as a mother of 4, including my older sister, who is turning 50 with a developmental disability, my mother has been both. When my sister’s disability was diagnosed before the age of 2, my mother was advised to place her into institutional care  but she did not listen to that advice. My sister remained at home. My mother found programs when she could, and when she couldn’t find them, she made them.
My mom was convinced that my sister could learn more from children without disabilities if only she could spend more time with them. And it didn’t make sense that she should spend a big part of her day traveling to a special school when she had a program right in our neighbourhood. It was a pretty strange idea at the time, but my mom convinced another mother, who was also the school kindergarten teacher,  that maybe my sister could spend some time in this classroom setting with children a bit younger than her,  for a few hours each day.
My sister’s first segregated class experience in elementary school was a difficult one. Her teacher did not understand her needs, and did not seem particularly open to change. At that time, many parents would have been grateful to have a program at all and would have left it at that. It was difficult to speak up before we had special education advisories and parent advocacy groups. But my mom advocated to find a different program for her, where the teacher was ready to listen to my mom and work as part of a team, before this was commonplace. In the new school, my mom volunteered in the classroom once a week, which the teacher allowed and appreciated, and which also helped my mom to learn what was happening in the classroom, so she could better help my sister at home.
My sister continued in segregated special education classes until graduation from high school when she was 21. But my mom was thinking about ways to prepare her for what happens after that time, and she pushed the boundaries again to create programs when there were none. What if there could be funding for an assistant to support my sister in a few regular classes? Could she spend time with her peers who did not have disabilities? Could my sister get some time outside of the classroom to learn work skills with the support of an aid? This was not standard at the time. In fact, it was just a pilot, to see if it could work. But people were willing to try and my sister had both some inclusive education at her public high school, and she was able to develop work skills in a co-op placement, just like students without disabilities.
My mom understood that my sister needed more than what she could be offered during the school day and so she helped to start several programs for my sister and other kids at our local jewish community centre.  Eventually there were several evening programs, weekend activities, and a summer camp, which ran along side the summer camp for kids without disabilities, and sometimes my sister joined me in the activities  I was doing. It meant that there was a single drop off and pick up so more activities for each of us. Even though I was never able to go to the same school as my sister, when it came to what we did for fun, we got to do these things together. 
One of my sister’s favourite activities was day camp. She loved the songs and the dances, the cheers, and the competitions. What if she could be a counselor in training? My mom approached a local summer camp which has begun to include younger children with disabilities in their regular program. My sister was too old to be an integrated camper, but would they be willing to integrate a staff? It fit with their mandate of including kids with disabilities as campers and could model to kids and families that people with disabilities were valuable staff members as well. Somehow, my mom’s creativity won out again. My sister worked at that camp for many  years and earned a plaque recognizing her as an honorary life staff member. Staff supported her to do her job at camp and they also included her in evening social activities outside of camp. Since that time, many other individuals have transitioned from a camper to staff role, thanks to my sister and my mom, her advocate.
When my sister was diagnosed, there were no online resources or Facebook groups. You were on your own. Initially, my mother found some informal parent to parent support through the programs she participated in. She met a few other mothers in similar situations at a nearby church which held a nursery program.  And on Saturdays, she started to get to know some mothers of daughters in the change room at adapted swimming lessons. Swimming was not just a drop off program because all the kids who went needed their parents in the change room to get them ready and the lesson itself wasn’t that long, so they waited around during the class. This little bit of time with other mothers was helpful (at this time it was mainly mothers and not fathers who were involved in these activities) but no one had much free time  How else could parents spend time together and learn from one another?
My mom started a special needs parent group for parents from all backgrounds, which met once a month at our local jewish community centre.  Parents wanted to learn information, so there were different speakers who came, in addition to the parents helping each other. No one had very much free time, but people knew this was important and many tried to come. My mother also helped other parents when it came to IEP meetings. It was a small thing, as my mom explained it, but she would volunteer to go to the IEP meeting of another parent, so they would feel less alone, and be able to speak up. 

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My mom was a family advisor before they had family advisors. She did this work unpaid, and even though it ended up helping others, it started because she needed to help my sister. It was not respected work at that time, but it was the sort of work that mothers like her did because they knew their children best and they wanted to make things better. If it wasn’t for moms like mine, I am not sure when deinstitutionalization would have happened.  Inclusion at school and at work, it only occurs now because people like my mom spoke up and showed us how to make it happen.  So this mother’s day, lets thank these mothers. We can all learn from them, to inform what we push for today and tomorrow.  And an extra big shout-out to my mom who is pretty amazing.
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