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.
-->
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.
No comments:
Post a Comment