Today we had a nice crowd at the Chestnut Hill Library to hear from our invited speaker, Heather Bowditch, an Occupational Therapist with some extended preparation in clinical psychology (i.e., one of the good guys for parents :-) -- after our typical round of brief but important introductions, Heather began by reviewing some of the existing literature on how parents (and families) cope with the issues surrounding disabilities in the family.
Heather noted that some believe the way people cope with disabilities is related to similar stages used to cope with death (Kübler-Ross model): namely, denial, anger, bargaining, depression, and eventually acceptance. There was much discussion about this topic among those in attendance, with a consensus that while there is some similarity, there is also difference (e.g., non-linear, many stages are repeated, some experienced concurrently).
Many also reported that since there is really no time to grieve, many simply grieve in a "functional" way -- in other words, either the feelings are experienced while we are caring for our children, or they are addressed quickly (if at all).
Certain stages, like anger, can provide "apparent power" to cope with a sense of powerlessness; we debated on the effectiveness or the appropriateness. Then there is acceptance, a final destination for those grieving about death, but somewhat different when there is no known end in sight. One person noted that acceptance needs clarification and context; we accept the disability, but not for such things as level of service or ignorance.
Personally, I was glad that Heather provided much space for discussion throughout her presentation. I was also very happy that there were great sandwiches available before the meeting so I could concentrate on the discussion :-). Heather can be contacted by email.
My wife wanted me to make sure everyone in the group knew about the C2P2EI workshop on advocacy for our families and kids, it's a few hours from Philly but a worthwhile opportunity to network and to learn.