There's a lot going in North Carolina regarding the statewide 1915(b)(c) Medicaid Waiver and CAP I/DD / mental health reform / overhaul... more than any one person (be it parent or professional, or I dare say, legislative member) can keep up with.
As a short-staffed working mother of a DD teenager and new "typically developing" kindergartener, I often find it difficult to keep up with posting even the basic important stuff between "regular life" and "special life"...
I mean, as working parents of school-age children, we all know what it's like running the rat-race juggling our routine responsibilities, meet deadlines, pay bills, grocery shop, squeeze in the occasional doctor or hair appointment, and lug our kids around to various activities, play dates and so on... I do all that too.
But to put things in perspective for those working parents fortunate enough not to have to deal with the struggles and challenges of caring for and protecting a child (or adult) with Intellectual Disabilities, here's a breakdown of my extra "special" obligations so far for this calendar year:
But to put things in perspective for those working parents fortunate enough not to have to deal with the struggles and challenges of caring for and protecting a child (or adult) with Intellectual Disabilities, here's a breakdown of my extra "special" obligations so far for this calendar year:
- 1 three-day hospitalization,
- 22 (usually day-long) medical appointments with doctors and specialists (to include: dental, endocrinology, behavioral, neurology, gastroenterology, ophthalmology, orthopedics, medical rehabilitation, and physical therapy),
- 2 (2+ hour) IEP's (last calendar year there were 5 or 6),
- 3 CAP-related meetings (not including countless phone calls), and
- 5 other special DD involved events, meetings, and happenings.
Those are just the appointments and meetings specially relating to the specialized care, well-being and education of my daughter and does not include sick days, Miracle League baseball games, legislative assemblies, meetings with Senators and Representatives, DWAC meetings, other advocacy meetings and rallys, nor does it include any of what most of us would consider "routine" responsibilities as a grown-up and a parent, such as extra-curricular activities and appointments for my "typical" child, nor for myself (as if I had time for me)...
Which is why I've frequently been asked, "When do you sleep?!" Well, I don't, much.
That's just how we special parents roll.
But because the future of our children and their peers during this transition period is so vitally important and there's a great deal of important information to get out, explain, break down, dispel, and share with others, I've invited fellow Special Mother and Advocate, Anna Cunningham, to join in the blogging fun.
It's not uncommon when I'm out banging cans and preaching my cause to be asked if I know Anna or for someone wanting to connect us... I mentioned that to Anna when we spoke regarding sharing the voice of the World Wide Web; she laughed and said the same thing happens to her about me. ;-)
