Wednesday, November 14, 2012

Talking About Autism, Disability, & Hygiene

Shannon Des Roches Rosa
www.squidalicious.com

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 a disability, but hygiene doesn't have to be the skunk cabbage in the parenting bouquet -- not if parents do their best to understand why hygiene can be complicated, take cues from self-advocates with insights parents and professionals cannot provide, encourage self-care, recognize that not all hygiene needs will be rooted in disability, and help make self-care part of a routine.

Circumcision is a standby topic in parenting circles. Arguments both for and against the snip invoke culture, religion, sensation retention, or wanting Daddy to have a penis twin. But few mention the possibility of conditions like cerebral palsy or the fine motor challenges that often accompany autism, and how those affect uncircumcised penis care.

I certainly didn't dwell on disability when I was pregnant, so parents-to-be should consider this: some boys don't have the fine motor skills to retract their foreskins, while others lack the motivation for proper penis care. Some parents might have preferred, in hindsight, for their boys to be streamlined -- not only to simplify hygiene for the rest of their lives, but also because of 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 self-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 most parenting circles. Advice from self-advocates and professionals 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 practice and patience on both his part and his dentist's 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."

Still, his dentist wants him to have periodic full dental exams, 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 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 some of his friends, who have oral sensitivities and dental care aversions so pronounced their families use anesthesiologists twice 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 parents' number one hygiene concern -- they tend to expend far more mental energy on toilet training. Parents want children to achieve as much autonomy as possible, and do their best to support them thoroughly. Yet the path to children's toileting success is not always intuitive for parents who do not have a disability or who are not autistic themselves.

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 kids with autism and other disabilities abound. I recommend sticking to plans with thorough readiness evaluations, plentiful ideas for keeping children engaged and motivated, and 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 hygiene can hopefully avoid discouragement (an attitude children will likely sense). If you're having trouble persevering with your child's toileting, be sure to reach out for advice and support.

Since kids with disabilities can need more support than their typical peers, parents need to be cautious about unwittingly undermining self-care abilities. Parents should evaluate for and encourage any and all self-care skills within their children's abilities, such as bathing, wearing deodorant, toileting/wiping/flushing, managing menstruation, and understanding the steps required to wash hair. In cases where some physical or verbal support is needed, parents need to be extra-careful about resisting the urge to take over hygiene tasks for expediency's sake. 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..." Parents have to be ever watchful for those sweet spots where kids' abilities not only need but thrive on cultivation, and let them grow.

If kids push back about hygiene matters -- refusing to shower or use deodorant or Clearasil because they have no interest in what others think of them, needing reminders about toilet flushing, and openly discussing wearing pullups at night with classmates -- then parents need to tread carefully, and decide which battles are worth the effort. This is also an area in which consulting with willing self-advocates can be invaluable, because there may be additional considerations parents might not grok. A self-advocate friend recently recommended that we install a mirror to help my visually-oriented son see whether he'd lathered or rinsed his hair properly. I would never have thought of that mirror on my own.

Parents also need to remember that kids' hygiene needs aren't always subject to special needs complications -- they can result from typical development, too. A friend once 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, but her son needed  benzoyl peroxide, not a prescription. Not in that case, anyhow.

What else can parents do to help kids master hygiene self-care, besides letting them know that they're backed by full support and faith? One option is attaching tasks to a simple visual or written schedule, and so making them part of a routine. For kids who bristle at such obvious supports, consider apps like Epic Win, which transforms to-do lists into a role-playing game. Most critically, remain open to insights not only from parents and professionals but from the people with insiders' perspectives on these matters -- willing self-advocates. It's all part of supporting kids in what they usually want as much as parents do: achieving an appropriate level of hygiene independence.

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A version of this essay was previously published at www.blogher.com.