Today, I modified Charlie’s stroller for tomorrow’s outing. (I’m still waiting on coverage for an adaptive stroller.) When I had finished the upgrade, I was pleased with myself and thought, “I’m getting pretty good at this.” I was reminded of another blogger’s post written about Motherhood Merit Badges. I think there needs to be Special Needs Parenting Merit Badges. This is what I would include:
MacGyver Badge: For the parent that can, at a moment’s notice, fashion adaptive equipment out of items on hand. Be it feeding equipment, mobility devices, or anything else normally special ordered… If it’s not readily available, this parent can make a working version for temporary use.
NICU/ Hospital Expert: This is the parent that knows the best places to eat, quietest hospital lounges, quickest way to the NICU/pediatrics from the parking garage, alternate hallways in the hospital to avoid crowds, available resources, every hospital and NICU policy, the names of every other long term NICU/peds parent, the on call rotation, and best times to visit. This parent is usually more helpful than the hospital staff.
Automatic Denial Victor: This badge is earned the first time a parent successfully appeals an automatic denial.
Red Tape Guru: Parents who earn this badge have successfully applied for durable medical equipment coverage, insurance reimbursement, Medicaid waivers, and/or other state and federal programs.
Office Staff Diplomat: This badge is earned after repeatedly dealing with incompetent medical office staff and yet remaining cool. These parents are masters at getting what their kids need despite confrontation with ungracious office staff.
Honorary Nursing: Parents who learn what are otherwise considered nursing skills earn this badge. Feeding tube maintenance, injections, and airway maintenance are a few of the skills encompassed by this badge. Included in the badge is all the jargon, esoteric language, and knowledge a parent has to learn about their kid’s medical condition.
Impromptu Therapist: This parent is always inventing ways to incorporate every day activities into speech therapy, OT, or PT.
IEP/IFSP Whiz: No obstacle, school system, or official stands in this parent’s way. They know how to quickly and easily obtain appropriate accommodations at IEP/IFSP meetings without breaking a sweat.
Which badges would you earn? What badges would you add?