Frank Talk About Special Needs and Hygiene

Most parents fret about their kids' hygiene and how it is affected by factors like circumcision, tooth brushing, or toilet training. Said fretting escalates when the kids in question have special needs, but hygiene doesn't have to be the skunk cabbage in the special needs bouquet -- not if parents do their best to understand why our kids' hygiene can be complicated, encourage self-care, recognize that not all hygiene needs will be rooted in special needs, and help make self-care part of a routine.

Circumcision is a standby topic in parenting circles. While arguments both for and against the snip invoke culture, religion, sensation retention, or wanting daddy to have a penis twin, few mention the possibility of conditions like cerebral palsy or autism and how those affect uncircumcised penis care. I certainly didn't dwell on the possibility of special needs when I was pregnant with my son, so parents-to-be should consider this: some of our boys don't have the fine motor skills to retract their foreskins, while others lack the motivation for proper penis care  -- even if they can understand terms like phimosis and balanitis. Some of us parents might have preferred, in hindsight, for our boys to be streamlined -- not only to simplify hygiene for the rest of their lives, but because our sons already struggle with the social rules contradicting Janice Joplin's blissful mantra, "If it feels good, do it." It is so tempting and so easy to pull on a foreskin from the outside of one's pants! Who can blame a kid for taking advantage of such an opportunity? And who outside our community of parents, peers, educators, and advocates won't judge them for doing so in public?

It's fun to pepper a post with the word 'penis,' but I have to admit that dental hygiene is a far greater concern than circumcision in my parenting circles. We resent furry teeth stereotypes, and do everything we can to avoid having them apply to our children. We are not without allies; lots of people want to help keep our kids' teeth healthy and strong, including the U.S. government, and autism advocates, and their advice is usually sound: Talk to the dentist beforehand, see if they'll let your child come in during slower times and tour the office. Have your child practice sitting in the chair. Have them watch another child's dental exam. Don't force them. Use social stories about going to the dentist. Get specialized toothbrushes.

This advice has stuck for many quirky kids I know; their attitudes towards dental hygiene are now indistinguishable from the typical little shirkers who avoid toothbrushing because it's a chore and chores suck, and who can be convinced to tolerate dentist visits.

But some kids with special needs will not submit to the dental care they need, despite their parents' efforts to reassure or accommodate them. They may improve like my son Leo, who now lets us brush and floss his teeth, and whose fear of the dentist used to result in screams as soon as he walked through her office door -- but who, through years of carefully managed behavioral baby steps, will now sit in the unpredictable up-and-down chair, has developed enough muscle control to keep his mouth open for almost a minute, and will usually allow the dentist to probe his mouth with her fingers. He's never tolerated any other dental procedures, not even the lightest of cleanings. We've been lucky; he has what his dentist calls strong healthy horse teeth.

And now that he's suddenly almost nine years old, his dentist wants him to have a full dental exam, with x-rays, cleaning, and teeth sealing. Since he can't sit still for these procedures and would likely find them terrifying, we have no choice but to put him under general anesthesia so his dentist can finally give him a thorough dental evaluation plus the treatments kids are supposed to get every six months.

Leo's dental needs are not uncommon or even particularly intensive compared to a friend's child's. His oral sensitivities and dental care non-compliance are so pronounced that his family uses Leo's anesthesiologist two times each year to get their son's teeth the care they need, including lots of sealing. Despite being medically necessary, such "voluntary sedations" are often not covered by insurance, have to be scheduled well in advance for limited time slots, require several hours without food (so fun with perpetually hungry boys), and have to be cancelled if the child has been unwell during the previous two weeks. But it's either that, or no dental care at all except fluoridated water.

Still, dental care is not hygiene concern #1, at least not among my rareified set of parent friends. We expend far more mental energy on toilet training. Though we know not all of our kids will become fully independent, we want them to achieve as much autonomy as they can, and we support them thoroughly.

Sometimes there are obvious physical hurdles to self-toileting, as with cerebral palsy or other motor conditions. Sometimes the barriers are less apparent, and require a willingness to decipher seemingly illogical behaviors -- as when children with autism engage in toileting noncompliance for sensory reasons. What if the thought of sitting over a toilet's enormous bowl filled you with existential horror? What if you lacked the verbal skills to express your fears, and could only scream and lunge for the door each time an adult tried to coax your exposed bottom atop the dreaded porcelain void? What if you thought it felt great to sit on a big warm poo? What would be your motivation for using the toilet then? What if your body wasn't yet able to tell your brain when it was time to urinate or defecate? What would be the point of trying to toilet train a child in any of these scenarios, without first understanding why they were resisting?

Experts and ideas about toilet training our kids abound. I recommend sticking to plans with thorough readiness evaluations, plentiful ideas for keeping your child engaged and motivated, gentle reminders that the process could take months, or even years. Parents who have been coached to be attentive, informed, and realistic while helping their child learn toileting hygience can hopefully avoid discouragement, though occasional disappointment is understandable. We're on year five of our plan, our son continues to make real progress, and we still beam with pride each time he hits a milestone. If you're having trouble persevering with your child's toileting, be sure to reach out for advice and support.

Since our kids can require so much more care than their typical peers, we have to be cautious about unwittingly undermining their self-care abilities. It can take Job's patience to encourage skills like bathing, wearing deodorant, wiping one's own bottom, and washing hair, especially when those skills are acquired slowly or progress seems to stall, and when it's so much easier for parents to handle the matter themselves. The folks at Down-syndrome.org say that "95% of [Down syndrome] teenagers can brush their own hair but only 45% actually do so each day. This suggests that parents still find it quicker and easier to brush their teenager's hair for them..." We have to be ever watchful for those sweet spots where our kids' abilities not only need but thrive on cultivation, and let them grow.

We also need to remember that our kids' hygiene needs aren't always subject to special needs complications -- they can result from typical development, too. A friend recently had to laugh after a nurse informed her that her son's adaptive equipment-based skin infection was actually typical adolescent acne. She came in expecting antibiotics or another medical approach, when her son needed a trip to the toiletries or beauty aisle for some Clearasil pads, not to the pharmacist. Not in that case, anyhow.

What do we do when confronted with new hygiene needs (like acne care), or hygiene skills are mastered and we want them to stick? Attach them to a schedule, of course. Make them part of a routine. It's all part of supporting our kids in what they usually want as much as we do: working towards hygiene independence. I'll leave you with some examples and thoughts on the matter, from a friend with an eighth-grade daughter:

My middle schooler is very routine-oriented. The Down syndrome community actually has a name for it, "GROOVES." With that in mind, my daughter repeats patterns.  Brush your teeth, water pick, medicine. If you need to add anything, for instance, a fluoride rinse. You would just add it into her "groove." She knows how to tell time, so by 8:15 PM. everything begins like clockwork. Same thing in the morning. At 7:20 a.m. she goes into the bathroom and brushes her teeth, cleans her retainers, and puts them in. My job is to make sure everything is accessible to her. If her toothbrush is not there, it all falls apart.

As for hygiene, the same thing goes. She takes a shower every other day (she has extremely dry skin). Again, her groove. Everything needs to be accessible to her. She washes her hair and then starts washing her body from top to bottom. If she is having her period, I put a pad out for her and she takes care of herself. If the pad is not there, she knows where to find them.

The same thing goes for breakfast in the morning.  She has 2 to 4 pills she takes.  We put them in a pill container with the days of the week on the container. I always set in on the table with her glass of orange juice. Her groove is taking her pills with juice everyday before she eats. If we need her to take a new pill, we just put it into the container and explain to her what it is for.

When she was younger, 3 or 4 years old, we used a visual chart showing the steps on getting ready for bed. As she got older, we dropped the visual charts. Now she can follow verbal directions.

Having a routine for something that NEEDS to be done on a daily basis is a must for us. Even brushing her hair in the morning. After her teeth are brushed she gets her shoes on and brushes her hair while we wait for the bus. On the weekends, she has  left the house without brushing her hair because we have no bus to wait for. I guess we need to work on that!

Shannon Des Roches Rosa frets about parenting and special needs in this very space, every other Tuesday. She frets more frequently at www.squidalicious.com. She also coordinates other folks' fretting about the social scenes of school days past, at www.canisitwithyou.org.