So I asked a mom with a special needs child here in our community to put together a Wish List for us. For some perspective. I mean, what are we needing to accomplish to be useful on a local scale?
- van with lift/ramp, tie-downs in spot for chair, and at least five other seatbelts
- new manual chair
- power chair (within the next three years)
- remodeled bathroom into "wet room" with roll in shower, wheelchair friendly sink
- remodeled kitchen with wheelchair friendly sink, counters, cabinets, and appliances
- stair lift
- ramps for back door and garage
- replace carpet with hardwood throughout house (wheel-friendly)
- professional hanging of TV on universal mount for maximum range (eyesight)
- new dining table that better fits wheelchair
- modified light switches and door locks
- new stander/walker with better support
- "exoskeleton" that would actively assist my child/s body in achieving what plans his brain has (motor planning issues)
- head support equipment
- arm supports for communication work and self-feeding
- wrist weights
- adapted utensils
- replacements for malfunctioning switches
Home maintenance and repair (including dryer vent cleaning on the roof, cleaning of washer gasket, dryer lint trap, replacement of hoses to washer, drain and test hot water heater, heavy lifting in the garden, washing second floor exterior windows, replacing exterior wood trim that's rotted out, thorough cleaning of vacuum, remove and replace caulking, etc.)
Wheelchair and WIKE maintenance
Equipment cleaning and repair (wheelchair, meal set-up space, walker, humidifier, special needs car seat)
Errands (I have to be able to track and organize meds, appts, laundry, and food prep - never mind the needs of the siblings. I frequently run out of hours. On the other hand, sometimes it would be nice to just be able to go take care of mail or shopping without it costing some other part of the schedule.)
More coverage of personal care hours by skilled and empathetic folks.
More time and energy for to do lists (updates to install for communication device, need to reconfigure physical set-up, reorganize home areas to better assist in home therapy efforts)
More predictable self-care (working out - have to be able to continue to lift 55lb kid and 65lb chair, massage and PT, sleep - my child needs repositioning every couple of hours most nights, regular and nutritious meals, time for medical appts for myself, time with friends)
Enough cooperative outside help to let my brain recoup and go easily toward creative solutions, vs. merely patching things together on the fly. Being the only adult in a family which includes a kid with fairly involved developmental disabilities can be exhausting. And I miss reading.
$$ for online training/seminars for the communication device ($25-$50 per, depending), and someone to help with other obligations so I could attend at scheduled times (usually running to therapy or taking someone to medical appts when they're in session)
Well. I don't have a van in storage. Neither do I have a box of a full night's sleep. It all seems very daunting and so very BIG until I remember I do have something to contribute...time . And a skill set that allows me to provide something very personalized for mamas that would like to feel taken care of for just a few minutes and get a little dolled up, even if it's simply to go to the grocery store. Out of the Gray is about meeting women right they are...right where *we* are, with what we've got. There is a big need out there for some big stuff. And then there is a need for exactly what I can fill. If wishes were fishes, we'd all cast nets. Or maybe it would really stink around here.