I read this online column a few days back, and it gave me lots of food for thought. In it, a neighbour asks if it's appropriate for her to call Child Protection Services (CPS) on parents who provide care for their severely disabled child at the expense of their infant daughter. Has anyone else read it?
Holy freakin' cowbells.
I am glad to see that several people emailed in after the initial post to provide some more balanced responses, because the advice columnist's initial response was to affirm a call to CPS. I thought the first commenter (on page 2) echoed my thoughts -- the concerned party should get the parents in touch with support services first.
Now, how many of the general population know (1) that it's there and (2) how to appropriately effect a connection between the two parties? Very few, I am guessing. In part because services and protocols vary so wildly across cities, counties, regions, and states -- there is no consistent way to discover their presence. The larger organizations (like Autism Speaks and MyAutismTeam) try to connect to the more local groups, but keeping on top of what's current is a very difficult, time-consuming task.
Strengthening my conviction of this special needs 411 bewilderment are the instances
this year in which I got a taste of the frustration of those close to
special needs families who want to help, but don't know where or how to
start. I was contacted by a couple of people from my daughter's school district and some friends who know my particular situation and wanted info to pass along to someone they knew. I found out that, as little I know, it's a lot more than some officials. It gave me incentive to create a services pamphlet that, while neither comprehensive nor official, is a fairly decent first step to connect those in need with services and support in our area.
How disconnected we all are. There are so many fantastic people, groups, and services out there, and still so many who do not know they are there. So while the original writer's question made my blood pressure rise, I am glad it put this very important topic out there, so more are aware that services do exist for special needs families.
Most of my information came from our North Bay Regional Center and the professionals who worked directly with our son. Until we were in this situation, I had no idea that special day preschools, developmental therapists, and respite care were available to families on the spectrum. Every week I learn something new. It makes me wonder -- from whom did you hear about services and how did you get the information that helped your family?