What do you do all day?

Not too long ago I ran into an acquaintance. We were getting caught up on things and I told him how I had sold my business a year ago so that I could focus on my child’s needs full-time. “But doesn’t he go to school all day?” he asked. “What do you do all day?” he wanted to know. Resisting the urge to punch him in the nose, I put on my best smile and said, “Oh, you know, this and that. It’s a full-time job.” I knew he’d never get it, so I let it drop.

Last Thursday, September 29, 2011, I decided to keep track of my activities and tasks related to having a child with special needs. These are only the things related to the “special needs” part of our lives; I didn’t include the time I spent with my daughter, or grocery shopping, or dropping off a carload of stuff at Goodwill. I squeezed those things into the blank spaces between the stuff below. I think I was too busy to capture every single thing but in general here’s what made it onto the list:

6:30 Wake my son. Hand-over-hand assistance getting him dressed, bringing him to the bathroom, giving meds, bringing him downstairs for breakfast.

7:00 Eat breakfast, physically or verbally prompting him about every 30 seconds to sit down, use his spoon or napkin, take a bite, clear his plate, interspersed with a request to sit on the potty; assist hand-over-hand with brushing teeth, putting on shoes/coat/backpack.

7:40 Wait outside for school bus. After five minutes scramble to get husband to walk daughter to school, because she will be late.

8:00 Call School Transportation to find out why bus is late. “She’ll be there in five minutes.”

8:15 Bus arrives. Smile at bus driver and commiserate on traffic while wondering silently what I would have done if I’d had to get to work.

8:20-9:45 Desk time. As “case coordinator” for my son’s healthcare, services and schooling, the day begins with a perusal of a variety of list serves that help me stay aware of upcoming training opportunities, recreation programs, etc. Today prompts me to email my state senator and representative regarding an upcoming bill and hearing on special education legal issues. Then it’s on to Whack-a-Mole of calls and emails: Five emails and a phone call regarding finding a physiatrist, two calls to talk to a potential guest speaker at our city’s special ed parents meeting, send out an email to same group for an upcoming event, obligatory confirmation call for tomorrow’s endocrinologist appointment, phone call to geneticist office to request blood work orders be put through in time for tomorrow’s visit at hospital, email with son’s school for next week’s home visit.

11:30-12:45 Meeting at pediatrician’s practice. Because of my experience as a parent of a child with special healthcare needs, I’ve been invited to participate in a medical home transformation process. These meetings are weekly and also include a few overnight conferences over the next two and a half years. While I’m not really being compensated for this work, it feels important and meaningful.

2:00 Walk to pick up daughter, while making phone calls for delivery of diapers and shipment of specialty meds. While I am waiting for her to be dismissed, I read a few pages in a book written by other parents of children with special needs.

4:00 Son arrives home and luckily he has an amazing PCA who helps him for 90 minutes each afternoon so that I can get dinner ready and do laundry. This used to be the hardest part of the day.

5:30-5:45 Dinner, with same level of re-directing as at breakfast. Never as relaxing as I expect it to be.

5:45-8:30 Sitting on a stool next to my boy in the bathroom. He’s in a critical phase of potty training: he has figured out how to hold his pee, but not how to go. He has not peed since he woke up in the morning and is rocking and shaking because he needs to go badly. My husband and I take turns sitting with him until finally he declares that he is tired and we put him in a diaper and put him to bed. He asks to get up to go to the potty three more times with no luck, then pees so much within minutes of falling asleep that we have to change him and his bedding.

8:30 More laundry, then get my bag together for tomorrow’s developmental disability fellowship classes. Too tired to do more than toss some dishes into the dishwasher and veg out in front of the TV.

So there, that’s what I did all day. Despite the effort, the to-do list remains long–write a will, special needs financial planning, fill out dreaded re-authorization paperwork for supplemental health insurance, talk to husband about the implications of this new genetic testing; the list is always there.

I would like there to be a more inspiring or insightful closing paragraph for this post; it reads as whiny, self-righteous and needy. On some level, it is — I do find myself often wondering if anyone really understands how much work this is. I can’t even begin to address the issue of the privilege I have in being able to “stay home” to do these things. But there’s more to my life than this, yet alas the blogging time slot on today’s calendar is coming to a close and I don’t have enough time to figure out what exactly that is. Gotta go…I have too much to do today.