Ride the Wave

I wrote the following to appear in the Progress Centre's Fall newsletter:

One rainy Saturday in September I attended Ride the Wave, a Family Forum sponsored by the Nova Scotia Association for Community Living (NSACL), the Halifax Association for Community Living (HACL) and the Progress Centre.   The day consisted of several presentations by parents, caregivers, experts in the field and self-advocates.  There was also plenty of time for discussion and opportunities to talk to others present.  The day was a great opportunity both to learn about how to advocate effectively and to learn more about issues of shared concern.  I want to share with you a few thoughts I have coming out of the day…

When our kids are preschoolers, we are lucky to have the Progress Centre to help support us and introduce us to families of kids with similar needs.  To me, that has been one of the most valuable outcomes of being involved with the Progress Centre.  I worry that when our son enters the school system I will miss those opportunities to connect with other families.  One way to keep connecting is to get involved with an organized group like the HACL. 

However, the parents present at the event spoke of barriers to engaging with this type of group: limited time and the need to focus on dealing with the school system.  They also spoke about their feeling isolated and uncertain in dealing with the school system to get the support their children need.  One idea that was raised to help overcome these challenges is to form special needs parent groups at each school to support each other and share knowledge and information on how to navigate the system and resolve concerns.  What if more than one parent has a similar concern?  Several voices working together are more effective than one voice alone. 

What we need to recognize is that no one is going to organize this type of group for us – we need to get out there and take some action ourselves!  Once your child starts school, reach out to other parents, talk about what concerns you, and work constructively together to solve issues and provide each other with support and encouragement.   Connect with established groups like HACL to see what services they can provide or what advice they have to offer. 

Looking beyond the school years, when my son grows up, having benefitted from early intervention and an inclusive school environment, I want him to be supported to work at a meaningful job in the community and live as independently as possible.  I think that most of us Progress Centre parents share these types of goals. 

I don’t want my son to end up in an institution where he may be isolated, lack stimulation and be more vulnerable to abuse.  And yet that is where some adults with cognitive disabilities still end up.  Nova Scotia, unlike several other provinces, still maintains several residential institutions.  There is no clear commitment to close these places and increase support for community based services.  This is something that we should be aware of and we should be supporting the efforts of parents of older children who are trying to get the message across that institutional care is not acceptable.

There are many challenges facing families of children with special needs that other families do not face.  We need to get engaged, reach out to others and make sure our kids are able to live their lives the way they want and deserve to.

Mary Ellen