Life Skills & Independence: On Adolescence
My friend Bonnie Sayers recently wrote a post on BellaOnline about toilet training adolescents on the autism spectrum. Bonnie has two sons on the spectrum; her younger son, Matt, is 14 years old; next year he will be in the eighth grade and in middle school. Bonnie writes that he wears Good Nites underpants and has since he was 5 years old. Her insurance will no longer pay for name-brand diapers; she received 'very large generic winged' adult diapers instead in her last delivery but due to these being so different from what he is used to, Matthew has 'indicated' he won't wear the new diapers. And Bonnie would like him to start high school (as he will, after his one more year of middle school), without diapers, and brought up toilet-training as a self-help goal at a recent IEP meeting for Matthew. I'll quote what she writes:
The feedback I received at the IEP was that the Middle School has never done toilet training before so they did not have any information to proceed with. The teacher stated the time taking Matthew to the restroom would take away from his school work. An example of Matthew’s school work is he sorts chips, nuts and bolts and does puzzles. I think toilet training is a life skill that is more pertinent to his independence than spending another year doing the same thing he has done for many years thus far. The IEP team also brought up special education centers, which is not an appropriate school setting for Matthew.
But she also notes that most of the information on this topic is geared to children who are elementary school age. And that's all the more reason why I wanted to write about this very private matter of toilet-training adolescents—older children—on the spectrum. Bonnie is right-on that 'toilet training is a life skill that is more pertinent to [Matthew's] independence than spending another year doing the same thing he has done for many years thus far'—being able to handle wearing underpants and to stay 'dry' especially in different settings (school as well as home, not to mention public places) makes a huge difference in a child's, and his or her family's life and activities. It's not 'just' about being able to go into the bathroom and do what needs to be done, but about 'quality of life,' independence, the extent to which one can be 'aut and about.'
And Bonnie's post also reminds me how there's a lot more to be done about addressing the needs of older children on the spectrum. Susan Senator has written about some of these concerns (a recent post was about her son Nat's final IEP meeting—gulp) and Laura Shumaker recently wrote about adolescence on The Thinking Person's Guide to Autism. There's plenty out there about Early Intervention and 'getting started,' but much less about, as Bonnie notes, subjects like toilet-training an adolescent—because people are saying to themselves, that ain't gonna be me? If we don't have toilet-training by kindergarten……? Sort of the way I used to think, if Charlie is still in special education when he's five, what are we going to do?.
Well, Charlie has never not been in a special education class and now he's in a special education center, no longer among 'typical' kids his age. It's a school placement that has its disadvantages, particularly no interaction opportunities with 'typical' students, though (to be quite honest) Charlie had none when he was in an autism classroom in a public middle school, so this is something of a moot point. One advantage of him being in a center for kids with disabilities is that the various 'behavior issues' that kids on the spectrum may have can be addressed in a space in which those 'issues' aren't considered 'weird' or 'stigmatizing,' but the sort of things that need to be addressed. And bathroom business is certainly one such issue.
Without going into excruciating detail—I think it's necessary to maintain a sense of dignity and decorum in addressing this topic for an older child—Charlie was toilet trained at the age of 3 using the 'intensive' ABA 'potty party' method: You stop doing everything else and have your child sit (diaperless) on the toilet all ding-dong day so he learns, that is where that goes. We did this when we lived in a one-bathroom apartment in St. Paul after which we indeed said good-bye to diapers.
I'd like to say that was the end of the toilet-training business and we went about our merry way dealing with numerous other 'issues' for the next ten years.
Well, of course not.
As with many skills that Charlie has been taught, basic 'mastery' was just the start. Keeping the skill and maintaining it: We've been working on this for years and I think (but I could be wrong) that Charlie is pretty much independent in this area.
Not that there hasn't been a lot of laundry to do along the way.
Even after he was trained and out of diapers, every time Charlie started in a new school program (and, by the time he was 5, he had been in four different ones, with four different sets of staff, not to mention having had 3 different teams of in-home ABA therapists) required long discussions with everyone involved. There'd always be talk of 'taking Charlie on a schedule' and efforts to have him learn to 'initiate,' by placing numerous PECS cards with a toilet icon around the classroom, for instance. Accidents were not unheard of and every year (including now) I send in a bag with a full change of clothes, couple pairs of underpants and socks, and everything labeled. (Though now that Charlie has been growing so much, one year he came home wearing someone else's sweatpants 'cuz he'd outgrown his extras.)
In fact, for years I've carried a good-sized bag, so I could have an extra change of clothes (and a plastic bag) at hand for Charlie. (I confess, I've rolled my eyes when hearing someone talk about how glad they were to get rid of the diaper bag.) Gradually I only did this when we took longer, car-less trips (as we used to on the train into New York). These days, our longest trips are to the beach so I have extra clothes packed for Charlie anyways.
Too, for years, every teacher and therapist had to be told not to ask Charlie 'do you need to use the bathroom?" When he was about 5, Charlie—no doubt due to all the attention cast on this particular issue—had one standard answer to that question: 'No,' and even if there were other quite obvious signs of 'no' being not the case at all. (I'll leave those signs to your imagination.) For some years, prior to leaving the house or before Charlie went to bed, we always said 'let's go to the bathroom,' a gentler sort of command but not a question. Eventually, those requests were met with 'no,' too.
In other words, this whole business about bathroom use is in many ways about Charlie and us negotiating for control, and Charlie asserting himself—which is, indeed, a positive thing. After all, so much is out of Charlie's control due to his limited speech and communication and much, much else.
And then this past year, Charlie has pretty much taken the whole matter under his own purview. At home, we never tell him to go and he's been taking care of it himself, thank you very much. As there are some moments when it does seem somewhat more than clear that something needs to ensue, we've had to learn to exercise some parental control and not keep urging or asking Charlie to go; indeed, to let go and let be. Let's just say, he gets himself where he has to be now; he's not inclined to want to deal with the aftermath of what happens should he not make it.
There are many academic skills (reading, for one) that Charlie has a long long way to go with. But he does seem to have gained almost full independence in this particular area. Mind you, just a year ago while in the public middle school program, Charlie was back to having picture cards with a toilet icon in his schedule and to having to go into the bathroom at set times.
Life skills aren't 'just' life skills. They take learning, problem-solving, thinking, planning ahead, negotiating, strategizing. For instance, some days Charlie adamantly refuses a walk; while we're hanging around the house, he'll stop doing what he's doing (watching a video, perhaps) and get himself up to the bathroom. Afterwards, he often requests a walk or bike ride, now that he's ready.
As for me, I still tend to carry a largish bag, its interior filled up no longer with extra clothes for Charlie but with my own work files. And maybe, too, a book.