Tag Archives: special needs parenting

Goodbye GoodNites!

Sleep has always been a challenge for Bennett, so much so that we make sure nothing disrupts it. We’ve done the same bedtime routine for years, complete with having him wear a bedtime diaper, reading him two stories and giving him two big sips of water right before lights out. We keep the bathroom light on, the room temperature cool, and hope that he sleeps through the airplane noise.

Bennett asleep holding Peppy, his lovey.

Bennett asleep holding Peppy, his lovey.

Before he started sleeping through the night at age seven, nighttime potty training wasn’t even on our radar. It seemed cruel to take away the GoodNites and give him yet another reason to wake up — soaked through and smelling like pee, no less — in the middle of the night. Not to mention I didn’t fancy stripping sheets in the dead of night, either.

And yet, despite his new sleep awesomeness, for the past year we’ve continued buying Bennett nighttime pull-ups because he woke up every morning with a wet diaper. I just assumed he wasn’t ready to ditch the GoodNites. He certainly wasn’t showing any of the “signs of readiness” I had written about for a recent assignment. And because Bennett’s expressive language is delayed (a function of his autism and a genetic condition called 18q-), he never said, “So Mommy, you realize that I’m holding my pee all night, only to wake up in the morning and take a giant whiz in my diaper, right?”

We suspected that was his M.O., but we had no proof. And anyway, the routine was comfortable and it worked. I feared that taking away the diaper and the bedtime water — two crucial parts of the nighttime routine for Bennett’s autistic brain — would be cataclysmic for all involved. Picturing the bedtime meltdown, I was okay with buying GoodNites for eternity.

But one night last week, Bennett botched his plan to continue wearing nighttime pull-ups into adulthood. He was having a hard time settling and he ended up using the bathroom (No. 2) at about 9:30. At that point I checked his diaper and saw he had already peed in it (while awake!), so I put him in a new one. When he woke up at 6:30 the next morning his diaper was dry. There it was, proof that his bladder is mature enough to hold urine all night long. And also proof that when given a diaper (and water at bedtime), Bennett will pee in it rather than the toilet. It’s like we’d been enabling him.

Not wanting to squander our window of opportunity, we acted quickly. At afternoon snack I announced the new rules: “Bennett, now that you’re eight and such a big boy, you don’t need to wear a bedtime diaper anymore. And since you won’t be wearing a diaper, the new rule is no water after dinner.” (I didn’t bother getting Bennett’s buy in for this daring diaper experiment — as my Today’s Parent story suggested — because I knew if I asked him, “Do you want to wear underpants to bed instead of a diaper?” he would just say, “No!” We’ve learned many times that we have to the architects of Bennett’s developmental milestones — he’d probably still be wearing daytime diapers if we hadn’t taken them away four years ago.)

At bedtime, Bennett was not down with the new rules. He refused to put on underpants or his sleeper (I had to mostly dress him for bed that night) and even ran to the bathroom to try and fetch a GoodNite (I had hidden them). When it came time for the bedtime water, I reiterated the new rule and was met with resistance: “Water, Mommy. Please. Please? I want water! Please, Mommy!” I mean, it was rather sad, like he was approaching dehydration in the desert, but mean Mommy wouldn’t let him slake his thirst. It wasn’t the tantrum I had envisioned, but it did take him a good two hours to fall asleep, and then he was up about three times in the night and he peed in the toilet at about 1 a.m. I imagine the GoodNites had become a sort of security blanket and he was scared to sleep without one. He awoke nice and dry in the morning. Success!

It’s been a week now and Bennett has only had two accidents, both early last week — one because we weren’t strict enough with the water rule in the evening, and another because he had swimming one night and I think he swallows a lot of pool water. The crazy thing is, he now wakes up dry and goes about his morning of watching Super Why and eating breakfast without using the bathroom first. Mr. Iron Bladder can evidently hold it for 10 or 11 hours. To think of the money we could have saved if only we’d said goodbye to the GoodNites earlier!

I jest, of course. Who knows if Bennett would have been ready even six months ago? As the week has gone on he’s accepted the fact the diapers are gone and that water ends at dinner, forming a new routine in his head. He’s settling better at bedtime and sleeping through the night again. Really, it hasn’t been as painful as I thought, and I can breathe easier knowing I won’t have to source astronaut-sized diapers for Bennett in a few years’ time.

 

 

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Life according to the schedule

When I was a teenager and into early adulthood I was a maker of lists. Grocery lists for the store, homework priority lists, bulleted resolutions every New Years Day, and even “Lists of Men” in university (guys I thought were hot, in order of their hotness). Making lists made me feel on top of things and in control during a fairly chaotic time in my life: the transition from child to independent adult.

Now that I’m a grown-up I make far fewer lists. I still write down daily work-related tasks like interviews and blocks of time for writing, and about once a month I put effort into the Superstore list, but for the most part, life is so predictable I know what’s coming next and what chores I need to complete so there’s no need to write it all down.

The irony is that just as I have become liberated from schedules, Bennett has become a slave to them. We are now the owners of three sets of visual schedules that help our autistic son do everything from choose an activity during free play, to put his pyjamas on at bedtime.

The orange strip shows the get-dressed task in order from first (go upstairs) to last (put on socks). Breaking "get dressed" into four separate tasks (underpants, pants, shirt, socks) helps Bennett remember every item and the order they go on.

The orange strip shows the get-dressed task in order from first (go upstairs) to last (put on socks). Breaking “get dressed” into four separate tasks (underpants, pants, shirt, socks) helps Bennett remember every item and the order they go on.

Many kids and adults with autism benefit from visual schedules. These are binders filled with little pictures of things my son might do during the course of the day. The idea is to plot tasks out for him visually on a velcro strip so there won’t be any surprises and to ease transitions between activities. Since he can’t yet read, pictures work best.

The idea of the visual schedule was introduced last year when Bennett was in the Specialized Autism Services program through Renfrew, his school. His aides used an activity schedule to direct his play and get him doing things related to the speech, fine motor, gross motor and behaviour goals in his Individual Program Plan. The teachers at his school also use them in the classroom. You can’t just tell Bennett, “Now we’re going to do a craft,” because he’ll say, “No, I don’t want to.” But if you show him a schedule with the craft icon, he’ll do it. The schedule was like gospel.

Bennett brushes his teeth on cure from the schedule.

Bennett brushes his teeth on cue from the schedule.

I started using one in the mornings for getting dressed, and in the evenings for bedtime, to motivate him to brush his teeth, put on his pants, etc., without having to constantly nag him. With the schedule to refer to, he knew what was expected of him.

Happy, happy, joy, joy, right? Well, kind of, sort of, not really. Life under the rule of Bennett’s schedule is constricting. The older he gets, the more he gets set in his ways. We are now at the mercy of, and rely on, the schedules. They really are like gospel in that if we don’t follow them, behaviour hell breaks loose.

For example, Bennett is currently obsessed with the cartoon Super Why. In the fall he got in the habit of watching Super Why once in the morning and again before dinner. The problem was he would watch only the same two episodes over and over again. I could suggest different episodes, but no. Following the advice of his school psychologist I finally resorted to creating a Super Why schedule. I printed off images that represent every episode of Super Why and I cut them out into little schedule squares. Now, I give him two different Super Why choices to choose between. The strategy worked to get him watching different episodes, but I fear he’ll be watching Super Why FOREVER (case in point: he wants to go as Whyatt from Super Why for Halloween, a holiday that’s eight months away!). If there’s no Super Why, if for some ungodly reason Netflix is NOT WORKING, Bennett turns into Linda Blair from The Exorcist.

Yes, we now have a schedule exclusively for Super Why.

Yes, we now have a schedule exclusively for Super Why.

Other routines he’s stuck in (but that we don’t have a visual schedule for) include: eating cheesy eggs for breakfast every Saturday morning, watching Joseph and the Amazing Technicolor Dreamcoat every Saturday afternoon, and playing hide-and-seek every night after dinner. He starts planning the weekend on Thursday, trying to get me to commit to cheesy eggs and Joseph well in advance. It limits our ability to be spontaneous (pancakes for breakfast? Forget it!). It’s also exhausting. I would love to be able to tell him to go get dressed and have him run off and do what he’s told, just like that. (The one saving grace is when we travel we leave the schedules at home — outside of the ordinary, his need for routine lessens considerably.)

But for Bennett at home, these routines and rituals are a life-saver. I can’t imagine what it must be like to be inside his brain. I think that to him, the world must be a confusing, overwhelming place filled with words, body language and nuance he just doesn’t understand. I sometimes think that when I open my mouth and tell him a bunch of stuff all at once, he hears the woman from the Charlie Brown telephone, “Wha-wha-wha-wha-wha-wha…” So those simple pictures on a velcro strip translate the hieroglyphics of the spoken word into commands he can understand. Like my adolescent and young adult lists, Bennett’s visual schedules bring order to his world.

The road ahead

As I sat in one of the Adirondack chairs at  Nellie Breen Park this past weekend, cold beer in hand (civilized, right? And thanks again fellow Inglewoodian who shall remain nameless), watching my children play completely unassisted while I chatted with neighbourhood moms and dads, a thought occurred to me: I have arrived!

It was the first time I was able to actually relax at the park, without worrying about Bennett falling from the top of the slide platform, or him needing my help navigating across the boulders by the gazebo or balancing on the spinning ring apparatus. Meanwhile, Avery played with a gaggle of her girlfriends; occasionally Bennett would chase them down and they would run off screaming. For two hours this went on and I think I stirred from my chair maybe four times. It was liberating.

I love this adapted bike from Renfrew -- makes it a lot easier to learn to ride. At Nellie Breen park in Inglewood.

Gotta love this adapted bike from Renfrew — makes it a lot easier to learn to ride. At Nellie Breen Park in Inglewood.

Bennett and I returned to Nellie Breen on Tuesday morning with his physical therapist, who brought along an adapted bicycle for Bennett to ride. Apart from his habit of looking in every direction except straight ahead (and thus veering off-road), he did great. She’s thrilled with his progress this year and can’t believe all the things he can do by himself (I’m a proud mama). The fact that he’s five and just learning how to ride a bike is a non-issue — I’m happy he’ll even try. And I’m ecstatic that he wants to climb on everything. Hooray!

After my story in Swerve came out last week I was inundated with supportive e-mails from family, friends and strangers. Some people shared their own stories and struggles with me; everyone wrote words of encouragement. My sister-in-law, a social worker, wrote this:

“I ran a support group for a couple of years for parents dealing with “ambiguous loss” (as I called it); mostly those who adopted children and later found out they had FASD and were mourning the “loss” of their dreams/expectations of that child’s future. Very hard. We talked a lot about how the child may be completely happy in their future world they and their parents created for them, but it was the parents who had to change their expectations of what the child’s future “should” look like, as “normal” may not be the reality for them or make them happy. However, “normal” is different for everyone (and usually only an illusion anyways)… Whatever works the best for the child to reach his full  potential in life is all we can hope for. They are all  so different, and I’ve heard of so many “hopeless” cases that have turned out fabulously with futures with jobs, great homes, even marriages and children. So never lose hope.”

I love her perspective, and found it fitting that one of my mom friends whose daughter also has autism, chose to share this inspirational e-card yesterday:

We're travelling a different path, adapted bicycles and all, and I'm choosing to embrace it.

We’re travelling a different path, adapted bicycles and all, and I’m choosing to embrace it.

The road ahead looks clear — if different than I dreamed it would be — and, hopefully, easier to navigate than it’s ever been.

Some horse therapy at Tanque Verde Ranch

Sitting atop his horse at Tanque Verde Ranch east of Tucson, Ariz., Bennett looked relaxed, cool, collected even. And when Jake started walking around the corral after Bennett made a kissing sound (and thanks to some encouragement from Bennett’s instructor and Buckaroo camp counsellor, Emma Anderson), he grinned the biggest smile I’d seen in awhile.

I had heard that horseback riding is great for children with autism. Called “equine therapy,” the benefits of sitting astride a horse range from vestibular sensory stimulation and bonding between horse and child, to gross and fine motor skill strengthening thanks to balancing to stay on the mount and steering with the reins. So when Bennett had a chance to go horseback riding at a dude ranch I suggested he try it. No argument there — he couldn’t get his helmet on fast enough.

Bennett was super excited to horseback ride and he loved it.

Bennett was super excited to go horseback riding.

“My horse is Jake,” he told me before Emma helped him into the child-sized saddle and adjusted his stirrups. “I am going to ride him!”

I half expected Bennett to chicken out and want down, or to bounce around precariously when Jake began a slow walk around the corral, but he just smiled and went with it. The coolest part was that Bennett was actually holding the reins. It would be a stretch to say he was steering Jake (the well-trained horse just followed Emma around), but the longer he rode the more confident he became.

“He’s a natural,” Emma said as we walked around the ring with Bennett and Jake. “Just look at his seat.” A “good seat” on a horse is maintaining balance without grabbing an aid like the mane, and staying grounded in the saddle during the ride. Emma said some kids clutch the saddle horn or get jostled around. Not Bennett. He even rested his hand on his hip like a weathered cowpoke.

A natural rider? Well, why not. Some things should come easily.

A natural rider? Well, why not. Some things should come easily.

When Emma asked Bennett if he’d like Jake to go faster his immediate response was, “Yes!” It took a lot more encouragement to get Jake trotting (Emma had to pull on his lead while jogging), but the result was priceless: Bennett absorbed the movement easily all while giggling.

After trotting several times Bennett finally said, “I am all done riding.” I asked him if he’d like to ride Jake again later in the day and again his answer was clear: “How about yes!” I can’t say if Bennett bonded with his horse or even whether horseback riding helped his motor skills in any way. I do know it gave Bennett great joy to ride a horse and it’s one of the few things he’s tried that has been effortless, so that’s good enough for me.