More breakfast table talk

About a year ago I wrote about a brutally and beautifully honest conversation that I had with my daughter about her brother’s developmental disability. A wise friend commented that our conversation would be one of many “periodic check-ins.” She was right.

Not surprisingly, the last few weeks have created a need for more conversation.

A couple of months ago we started toilet training our son for the umpteenth time. It required intense amounts of attention, all landing during the winter holiday break, keeping us close to home and all eyes and hands on our boy (and his laundry). While he’s made great progress, apparently she’s “had enough of it,” according to the sign on inside of the bathroom door:

bathroom sign

In my defense, good ergonomics are a critical part of his success, and he’s in the bathroom every 30 minutes, so it’s less work to just leave the potty seat and footstool in place. But I get it. She puts up with a lot, and this was the last straw. Needless to say, we’re trying harder.

Then there was the breakfast table comment she made after all of the media attention that I have been getting these last couple weeks after the Huffington Post article about his complex needs. She had seen a copy of the care map on the laptop in the kitchen. “Mom, you know that web thingie that you made? Did you know that the G is for Gabe, and that he’s in the middle? Just sayin’.” Point taken.

It’s so much easier to deal with this now that we’re talking openly about it. I can imagine that not too long ago, sibling frustrations were never voiced and parental guilt just festered. Not too long ago, we didn’t acknowledge it either. But giving everyone’s experience some air and light is so much easier than denying it.

I’m so curious to hear what others are doing to support all their kids.

"Mommy, me and Daddy" according to my daughter  (age 3?)
“Mommy, me and Daddy” according to my daughter (age 3?)

Water, water everywhere

I’ve been quiet, but life hasn’t. Returning from some back-to-back conferences, I dive into our latest round of potty training my 10-year-old son, who confounds us by being successfully able to stay dry at school but not at home. You can imagine that by now, we’ve tried nearly everything. Quitting diapers cold turkey, sitting on the toilet every five/10/30/60 minutes, sitting on the toilet until he goes, sitting only when he asks, rewarding him when he sits on the toilet, rewarding him when he goes, rewarding him when he stays dry—stickers, M&Ms, iPad time—as if we’re one ingenious bribe away from getting this to work, potty books, social stories, pretending to ignore it completely.

We’ve received advice from countless experts: behaviorists, toileting clinicians, gastro-intestinal specialists, neurologists, developmental specialists, pediatricians, other parents, teachers, day care providers, nurses, grandmothers. It’s not like we’re trying to solve world hunger, but it’s a complex problem to us. Our school says that he’s the most complicated toileting case they’ve ever worked with.

Every few months we pump ourselves up for a renewed effort, one that requires patience, detachment and strong legs to make the trips up and down the stairs to the washing machine. This latest effort started yesterday. We’re trying something new this time, getting help from the behaviorists at school who have agreed to come to our house after school through bedtime to help us do what is working successfully for them. Less than 24 hours later, we’ve had major success—bringing him to the bathroom an hour after he fell asleep actually worked—and a morning filled with tantrums, flopping, crying, refusals to sit on the toilet, and refusals to walk to the bathroom. After my husband lifted our son from the breakfast table to take him to the bathroom, my daughter welled up in tears and said, “That doesn’t seem like a very nice way to treat a child.” Ouch. And with that, I remember every other time we’ve stopped trying.

Sitting down to write today, I wondered the point of today’s post would be. I like to have an insight, a solution, a resolution. But today there is none. There’s lots of ambiguity—can he really do this? Can we?

I’m getting used to this ambiguity. Often special needs parenting (and living in general, as you all insightfully point out) is about learning to thrive in that in-between feeling—being clear about what you want, having faith that you’ll get there, but not being attached to getting there. It’s like floating. I let go of the shore, on my back looking up at the sky, not getting too caught up going in any particular direction, occasionally paddling my feet to steer me in the generally right way, but not so much that I get a cramp. Just being. Just floating. Just appreciating being wet.

Do you float? How? When?

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.