Tag Archives: parenting a child with special needs

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.

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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.

How an overflowing toilet = gratitude

Last week Blake and I attended the annual Chromosome 18 Registry & Research Society conference in San Antonio, Texas. In between strolls along the lovely River Walk, a visit to special needs amusement park Morgan’s Wonderland and a quick stop at The Alamo, we got caught up on the latest Chromosome 18 research and met children and adults with the same condition as Bennett (18q-).

Who needs an iPhone while waiting for guacamole when there are fish and ducks to watch?

I left the conference feeling both hopeful and thankful. Hopeful, because we met a young man with 18q- who just graduated from high school and will be attending college in the fall. We also shared a taxi back to the airport with a woman with 18q- who lives independently and travelled to the conference by herself. And thankful, because Bennett is doing so well in spite of his challenges. He walks and runs, feeds himself (however messily) and is talking better every day.

But it’s still hard, as I discovered yesterday. His behaviour hasn’t received the memo that, since he’s potty trained and all, he’s a big boy now.

I came home from working on my laptop (I’d hired a babysitter for the day) to discover that Bennett had flooded the upstairs bathroom. I’m not sure if he’d been trying to flush another pair of Nemo briefs or what, but when the water in the commode didn’t go down he’d evidently continued trying to flush until the toilet overflowed and the entire floor was covered in water, according to a bystander’s testimony (that would be his sister). At any rate, water was pouring down through the ceiling into the pendant light above our kitchen island just like a faucet, the upstairs hallway carpet was soaked, the babysitter was abashedly apologetic, and there was Bennett, asking me, “Are you angry Mommy?” Good question.

Was I angry when he accidentally called 911 during this year’s Stampede Centennial and a police van showed up at our house (for the record, I was in the backyard drinking margaritas with a friend. Can you blame me?)?

This is what shows up in front of the house when your four-year-old calls 911.

Was I angry when he somehow programmed our house alarm to go off when I answered the phone?

Was I angry when he caused our friends’ garage door to overheat and stop working from repetitively pushing the button to make it go up and down?

The answer: yes, and no. I get frustrated that no matter how many times I tell him not to do something (“Quit flushing the toilet!” “The telephone is not a toy!” “Don’t play with the alarm keypad!” “Stop pushing the garage door button!”) he lacks the impulse control to change his behaviour. On the other hand, I am glad he is physically capable of doing all those tasks, even if he overdoes them. I am thrilled he recognizes my emotion as anger and wishes me to be happy instead (“Mommy, be happy?” he asked me earlier this afternoon). I am hopeful that one day he will learn that those are inappropriate ways to “play” and that instead of laughing delightedly at the swampy bathroom floor, he’ll stop mid-flush, run downstairs, and tell the babysitter that the toilet is overflowing.

In the meantime, I will practice deep breathing and call some drywallers. In the grand scheme of life it’s a very small thing: wet towels, wet drywall, perhaps a bit of mould. No biggie. He didn’t burn down the house. No one got hurt. As I learned last week in San Antonio, it could always be worse … gratitude.

Bennett achieves a new milestone — negotiating his way from platform to platform — at Morgan’s Wonderland.

When I say my kid is special, I mean “special” special

On the outside, my son Bennett looks like any typical four-year-old boy. He’s cute, has a naughty streak, loves to jump on the trampoline and relishes tormenting his big sister. But all is not as it appears in his school picture.

Bennett also has a genetic condition called 18q- . He’s missing a small piece of one of his 18th chromosomes. This means he has been slow to hit milestones like walking and talking; it also means he has a difficult time playing and interacting with peers. On the whole his symptoms looks a lot like global developmental delay or autism (which he has also been diagnosed with).

Only one in 40,000 children in North America are born with a Chromosome 18 abnormality. When my husband and I decided to try for a second child and play what we used to half-jokingly refer to as “genetic roulette” (because we were, at ages 36 and 35 respectively, somewhat “older”), this condition was definitely not on our radar. And anyway, who really thinks they’re going to have a baby that makes them want to stop reading What to Expect the Toddler Years because he can’t stack blocks, or walk, or put two words together? In those early years, it was easier to put down the book and hope Bennett would catch up, than entertain the thought that something was wrong.

Saying it’s hard to parent a child with special needs is an understatement. It’s a slog. It’s tiring, it’s isolating and it’s scary. We worry about Bennett’s future (will he be living in our basement and bagging groceries at age 30?). And sometimes, because that thought is so frightening and depressing, all we can do is joke about it (humour really is the best medicine). Last week I chatted with a neighbourhood friend at the playground about Bennett and shared that he’s recently been potty trained (yay!) and he lost his first tooth. My take: “We’re so glad he was potty trained before he lost the tooth. I would have been beside myself if he was wandering around in diapers with a big gap in his mouth.” There’s a certain order to milestones, after all.

But joking aside, what happens when you have a child with special needs is this: your illusion of the perfect life with perfect children is shattered. There won’t be skiing at age four and hockey at six and lots of friends. There may not be university or marriage or future grandkids. The not knowing is scary, and sad. So I mourn the experiences I thought I’d share with my son. But I also work hard to celebrate his little milestones, like learning to dress himself, because for Bennett, that’s huge — it’s one small step on his slower, windier road to independence (and one step away from my basement). I also embrace and enjoy the awesome things we do together, like riding the Lake Louise gondola or playing on the beach in Mexico.

I also try and accept Bennett for who he is, and appreciate what he has brought to our life. More patience. More love. Way more hugs and kisses. He may not be skiing next winter, but you can bet he’ll be riding the magic carpet.

We love you B!

Bennett is currently attending preschool at Renfrew Educational Services where he works with therapists on his speech, fine motor and gross motor skills. He has made huge strides over the last two years and he will be attending kindergarten there in the fall. To say thanks and give back, Blake and I are raising money for Renfrew. Read more in Wednesday’s blog.