My own private gate

I'm back from holiday and delighted to share with you a guest blog from Jennifer Graf Groneberg (photo above, with her twins Avery and Bennett), author of Road Map to Holland: How I Found My Way Through My Son’s First Two Years with Down Syndrome, a memoir that provides practical insight and emotional support to parents of children with special needs.


Thank you Jennifer for this beautiful reminder that we are families first and foremost, and sometimes the focus on disability, difference and rehab has to take a back seat.


I'd like to know how other parents close their own metaphorical "gates" when they need a breather from the intensity of special-needs parenting. Louise


My own private gate
By Jennifer Graf Groneberg


I live at the end of a twisty gravel road in the mountains of Montana in a simple house, just two bedrooms, originally built by a man and his wife as a retirement home. They also built a gate across the driveway. It’s a thick wire strung between two steel posts sunk deep in the ground. When you pull it tight and hook it into place it feels final: gate closed.


We’d lived in this house for almost five years before I felt compelled to use the gate. It was the fall that the twins came home from the Neonatal Intensive Care Unit; the first fall we’d been living with the news that our middle son Avery had Down syndrome. I was tired, then, so tired. I didn’t want to explain anything anymore to anyone, I didn’t want to put on a brave face, or not put on a brave face. I wanted time to get to know my new family, time away from the well-wishers, time out. I put up the gate.


Just the act of stretching the wire across the driveway made me feel powerful. I had some say here. I could close the doors, if I needed to. We could have a break, now and then. I could say no. It was incredibly freeing, and I haven’t forgotten that feeling. The gate, and the lesson of the gate, have stayed with me.


When I am feeling low, or overwhelmed, or simply out of answers, I put up the gate. I play with my children, I bake cookies, I listen to music. We read books. We dance. We wear our pajamas all day. I sometimes cancel our therapy appointments. I say the kids are sick, or that our car has a sudden, unexplainable flat. I feel a bit guilty about these lies, but what I get back is worth it to me—space. A place to reconnect with my family. A place to stop being the mother of a child with Down syndrome, and simply be Mom. It’s so easy, with the gate up. Our family behaves as a family. Everything is natural. I sometimes forget that there is any trouble here at all.


But of course life moves on, as it must. The gate comes down. We go out into the world. We resume our activities. I reschedule all the appointments. I carry on as the mother of a child with Down syndrome. It’s okay. Most days, I am fine. Most days, I can bring that feeling of normalcy out into the world, and try to swing things a bit more toward acceptance. It’s what I do; it’s what we all do.


But when I am not feeling up to it, I know what comes next. I pull the wire tight and start canceling things, until it feels like time to get back into the fray. My own private gate, temporarily up while I’m under repair.

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What makes the night beautiful?

BLOOM reader Sarah Leal sent me a message that I think captures the inherent beauty of our children – which in no way depends on what they can or can’t do, on which milestone they do or don’t achieve.

It’s a reminder to open our eyes to the wholeness of our children – which is always there – but which we sometimes lose sight of when we get caught up in the “fix-it” mentality that dominates our culture. Thank you Sarah for this beautiful image!

It is so important to know when you are a new parent that amazing things can happen. It fires our resources to reach for the stars.

And it is equally important to know when your child ages that the stars are amazing, but they are not the only thing that makes up a beautiful night.

It is fantastic that BLOOM can provide that realness that we as parents need.

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Does your child struggle with keyboarding?

Touch typing isn't the answer!

I wasn’t great at sports growing up, but I did excel at piano, so it wasn’t a surprise when I aced my Grade 9 typing class.

Our elderly teacher made two rocket ships out of bright construction paper and placed them on a wall chart to track our collective typing speed. She divided the class into two teams and I helped propel our rocket to the top with my 90 word-per-minute scores.

Back in those days we were taught touch typing, memorizing the place of each key and the finger that should strike it, so that eventually we could type without looking. We placed our fingers on “home row,” then did meaningless drills, such as using our right index finger to hit “j” repeatedly.

Touch typing is still the gold standard for keyboarding instruction, but for children with fine-motor problems, it’s a recipe for failure, says Cynthia Tam, occupational therapist at Bloorview.

“Children who struggle to use a pencil to print are not able to move and isolate each finger, which is the basis of touch typing,” Tam says. “When children have fine-motor difficulties, we want to give them a computer to take away the fine-motor challenge. But touch typing simply adds another barrier.”

A Bloorview study of 15 clients with physical disabilities in 2003 found that a “hunt and peck” approach with one or two fingers – where children scan the board for the key they want and hit it – was more effective.

Based on their findings, a team of Bloorview occupational therapists and rehab engineers developed an interactive, game-based typing program that focuses on getting kids to type functional words rather than practise letter combinations using all 10 fingers.

Thirty-two children aged six to 12 with a variety of developmental and physical disabilities have taken the 10-week program. Each week, they begin with a group activity such as typing bingo, or chatting live with each other or online through Ability Online, a community of children with disabilities and illnesses. Then they learn a new typing game.

Bloorview occupational therapists Jennifer Mays and Mary-Beth Sophianopoulos created 10 types of games with multiple themes. For example, in Type Your Own Adventure, children type phrases or sentences to direct what happens next in an illustrated story. In Colour by Typing, they type the names of colours to fill in areas of a picture. In Wacky Stories, they type silly words into a story.

“We try to use high-frequency words so that they become automatic at typing those words,” Mays says. “And the games are interactive – they’re typing something to get the computer to do something, so it’s engaging.”

Children do 10-minute challenges each day as homework.

By the end of the program, students on average increased their word speed by three-and-a-half words per minute, and accuracy and punctuation improved. “Some parents reported that they were doing better with spelling skills and were more confident with computers,” Mays says.

The goal isn’t that children become speed typists, but that they acquire a speed that’s faster than they could print. “Only a secretary needs to type at 80 to 100 words per minute,” Tam says. “A lot of adults type with one or two fingers, at 30 words per minute, and they’re functional at work. We need to make parents aware that children with fine-motor problems don’t benefit from touch typing. Instead, we see significant gains when they do fun, engaging typing activities for 10 minutes each day.”

Chatting with friends online and using e-mail are great examples, Tam says.

Next steps are to expand the vocabulary in the Bloorview typing games so children of other ages can benefit, and to make the curriculum available to a larger audience. The Bloorview typing program is offered in the spring and fall. For more information, call 416-425-6220, ext. 3639.

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To infinity and beyond!

He caught his first fish. He climbed up a 10-foot ladder in harness and roared down a zip line – like Tarzan – giggling all the way. He paddled a canoe and got a black eye when his sail boat tipped. He rode Velvet and Jack. In a speed boat, the wind took his breath away. He explored an island and collected bugs. He made friends.

He made friends!

The ordinary rites of summer for most kids, but a new world for my son Ben, who just spent his first week at overnight camp at age 15.

Ben has multiple disabilities, and we’ve never been able to find a sleepover camp that could meet his needs. Many are targeted to typical kids and aren’t physically accessible. Others are open only to kids with a specific disability.

Ben went to Camp Kennebec on Bull Lake, a “non-competitive, inclusive” camp for children with attention-deficit hyperactivity disorder, learning disabilities, behaviour issues and autism.

He was the first camper with physical disabilities who didn’t speak, but they were willing to make it work for Ben, who attended with a support worker fluent in sign language.

The camp isn’t fully accessible, so we borrowed an all-terrain wheelchair from Bloorview and they put Ben in the cabin closest to the eating hall and lake. The boys in his cabin were significantly younger than him, but closer to his size (he’s tiny) and developmental level.

I was a nervous wreck after we dropped him off – the first time we’d been separated in six years. But soon I received an e-mail, and then another, from Ben’s worker Coco, and what I read astounded me.

Everyone has taken Ben under their wing and have been going out of their way to include him.

Ben is a different person while riding. I think he really loves being up high.

Today he…went down the zip line. Getting him up there was orchestrated by no less than five Camp Kennebec staff with me down below shouting up and taking photos.

After that we went for a super fast speed boat ride. I don’t think my photos can possibly show you just how much he loved it.

Yesterday we were on the sailboat, when a big gust of wind took over and we tipped! We are all okay but Ben did get a goosebump on his forehead. He was cracking up laughing.

Today’s was Eric’s birthday. He is in Ben’s cabin. Ben was so excited about the party (ice-cream sundaes and cake).

Ben has earned two merit points.

We’re taking a trip to an island tomorrow. The wheelchair probably won’t work so one of the stronger staff is going to piggyback him up.

Ben went fishing and after many seaweed ‘fish,’ he caught a real sunfish. He was so excited.

Tonight at announcements I got a little emotional. Ben told me he wanted to tell everyone about catching his fish. He stood up and I knelt in front of him to interpret. He clearly signed: “Today I go boat to island. I go fish and I catch fish. I’m happy.” He got a big round of applause and Donz and I started to cry. I explained that I was very moved because I love seeing more of Ben meaning what he is thinking.

When we arrived to pick Ben up, every camper had a story about him. “Ben was my little buddy,” said one, putting his arm around Ben. An older camper proudly described how he “saved” Ben when the sailboat tipped.

Coco caught a beautiful moment on video of Ben on the trampoline. He doesn’t really have the strength or coordination to propel himself up and down, so he likes to lie down while the others bounce. Ben giggled insanely as a teenager bounced higher and higher and higher. The teenager, who has a developmental disability, then turned to a counsellor and yelled, beaming with satisfaction: “Look, I’m helping. Look, I’m helping.”

Camp Kennebec surpassed all of my expectations and dreams. The first thing the counsellors said when we pulled up was: “Can he stay for another week?”

Another staff member talked about how much the staff and campers got from Ben – seeing him succeed at so many things despite great obstacles.

“If I could give Ben the most wonderful surprise,” one camper said, “I would give him a voice.”

It wasn’t apparent to this camper, but Camp Kennebec had already done just that: for one glorious week, Ben was successful, included and heard.

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TV bad for baby, growing body of science shows

From 24-hour “Baby’s First TV” to Baby Einstein DVDs, it’s hard to fault parents for getting the idea that sitting their infant in front of a screen may prod development.

The “baby-brain” business – educational toys and DVDs that promise to make your baby smarter – is the largest growing toy sector in Canada.

But growing research suggests screen time doesn’t promote cognitive development and may hinder language in children up to the age of two, says a pediatrician in the developmental pediatrics training program at Bloorview.

“We now have hard data to show that children under the age of two should not be watching TV,” says Dr. Michal Begin, a pediatrician from Jerusalem who is studying at Bloorview.

Begin and Dr. Joelene Huber presented a review of the literature on the impact of TV and DVDs on babies up to the age of two at a recent Hospital for Sick Children Grand Rounds in Toronto.

They found the average kid these days starts watching TV at five months – compared to four years in 1971 – and it’s not unusual for baby to have his or her own TV.

When asked why they give babies screen time, a survey of 1,000 U.S. parents found that “about 20 per cent say it’s good for the baby’s brain, another 20 per cent see it as a babysitter, and 20 per cent say it’s because the baby enjoys it,” Begin says.

Products for children as young as six months claim to teach preschool skills like the alphabet, shapes, colours, numbers and counting. “The implication is that if you don’t do it, your kid won’t be as smart as the other kids on the block,” Begin says.

In fact, according to two large American studies published in the journal Pediatrics in March of this year and August of last year, watching TV before age two has no cognitive benefit, doesn’t promote preschool skills and can actually harm language development.

“Infants who watch TV before the age of two have a smaller vocabulary than kids who don’t, when both are tested at age three,” Begin says. “It certainly doesn’t make kids smarter and isn’t good for the brain.”

Young babies aren’t able to grasp the meaning of what they see on TV, Begin says, because they don’t understand symbols. “If they see a ball jumping on the screen, their ability to understand it’s a ball, and that they were just holding a ball, is very poor. When they watch TV, they see moving images with no meaning.”

Begin says that studies have found that when the TV is on, parents and babies talk less, and when parents do talk, they tend to use one word rather than sentences. “The babies are listening, but they’re not using language,” Begin says. “Infants don’t learn language from TV as well as from human interaction.”

A screen also can't provide the multi-sensory input babies and toddlers need to grasp basic concepts like bigger and smaller, Begin says.

Rich interaction with parents – talking, singing, playing, listening to music or reading together – and everyday, hands-on activities, like playing with pots and pans, is still best for early child development, Begin says.

“And it doesn’t cost anything!”

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'It's normal to be different' competition

I'm back from a week's vacation and wanted to let you know about this contest for children and youth ages 5-21 to be part of a media awareness campaign called "It's Normal to be Different."

The International Association for Life Quality is looking for songs, stories or poems that break through stereotypes about people with disabilities.

Submissions can be about any type of disability – developmental, physical, learning – and can be written by a youth with a disability or without (e.g. a sibling or friend).

They're open to Canadian entries.

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Locking kids up, tying them to chairs

A chilling article from the Atlanta Journal-Constitution crossed my desk yesterday. It’s about Jonathan King, 13 (right), a boy with ADHD who hung himself in a “time-out” room in an Atlanta, Georgia public school for students with behaviour problems.

Georgia is one of 19 states that do not regulate restraint and seclusion in schools, and don't have to report when and why they use them.

Following an investigation into their son’s death, Jonathan’s parents were shocked to learn that “time-out” meant confinement in an 8 by 8 concrete-block room where he spent hours alone, with no windows, furniture, bathroom, food or water. In a 29-day period in 2004, Jonathan was placed there 19 times, for an average of 1 ½ hours, and as long as 7 ½ hours. The Alpine School – which serves children with behaviour issues related to emotional disturbance, autism and brain injury – never told his parents about the seclusion, because they didn’t have to.

Although Jonathan had threatened suicide twice, school staff placed him in the room with a rope he had been told to wear because he didn’t have a belt. He used it to hang himself.

As a parent, I had my own experience with the unreported use of restraints at an Ontario school for children with physical disabilities 11 years ago.

My son Ben was in junior kindergarten. Most of the kids were bussed to school, but I drove Ben. I noticed another student was often put in a wooden seat with straps that came up and over her hips. The chair was designed for kids with poor motor control who couldn’t sit unsupported.

However, this child had no trouble sitting – in fact, the opposite. She was hyperactive and the chair was used to restrain her.

One day I went to pick Ben up at lunch and the kids were sitting in the class after lunch watching Barney. This girl was tied into the chair, thrashing around and sobbing. “Is she all right?” I asked the teacher. “It helps her to calm down,” she said. I left with a sick feeling in my gut.

I was horrified to walk into the class a few weeks later and find Ben sitting at an activity table in the same wooden chair.

When he saw me and tried to stand up, the hip straps pulled him back down.

I could feel the press of them against his legs. I was speechless, my eyes stung and I could hardly see straight.

"The children were told to go to one activity table and stay there, but Ben didn't listen," the teacher explained. "He kept moving from one table to the next." She undid the straps to release him. "We didn't want to give him a time out because then he'd miss out on the art project."

“What?”

Is this what my son had been reduced to? A child who was tied to his chair? He was four years old. What if I hadn't walked in then?

Ben can’t tell me. Ben can’t speak.

“This must never happen again,” I said slowly, grabbing Ben and leaving. I put him in his car seat and sat in the front of the car and sobbed. Is my son so terrible that he must be tied to a chair?

Ben was swatting at his ears, a tell-tale sign of his recurrent ear infections.

Instead of driving home, I drove to our pediatrician. Sure enough, Ben had two roaring ear infections. I was too ashamed to tell the doctor that I found my son tied to a chair.

The next morning I kept Ben home.

I called the principal about the incident and he apologized, said it shouldn’t have happened and that he would talk with the teachers right away.

“Does the school have a written policy about the use of restraints?” I asked.

“No.”

Putting a child in that chair is no different than giving a child a time out, he said.

“Yes, it is different,” I said. “The straps prevent him from moving, from standing up.”

The principal talked about a school he worked in where they had large kids with severe behaviour problems and had to “physically take them down” to the floor. In his mind, this was small potatoes.

“What about the blonde girl in the class?” I ask. “Do her parents know she’s regularly put in that chair to struggle and sob? What kind of message are we sending to the other kids about how to treat people?”

“The parents know about the chair and are in full agreement with its use,” he said. “She's hyperactive and there aren't enough adults in the room to ensure that she isn't a danger to herself or the other kids.”

“Lots of kids are hyperactive and they don't get tied to a chair,” I said. “Can you imagine if this happened in a regular school with a child with ADHD? Can you imagine a parent walking into their neighbourhood school and finding their child tied to the chair?”

“This wouldn’t happen in a regular school because a hyperactive child would have an assistant,” he said, “whose primary focus was to ensure their safety."

In other words, the thought of tying a kid to a chair isn't in the realm of the possible for a more "normal" child.

“Do the teachers document every time they put her in the chair?”

“No.”

“How do I know that this won't happen to Ben again? Ben can't speak, he can't tell me when something bad happens.”

The principal assured me it would never happen again, and we moved Ben to a different school at the end of the year.

I assumed things had changed in the ensuing years, so I was surprised to go online today and find a 2006 resolution by the Ontario Minister’s Advisory Council on Special Education calling for the Ministry of Education to develop a provincial policy that outlines accountability, training, reporting and use of physical restraints as a last resort in schools. It notes: “There is no existing policy with respect to…use of restraints, resulting in widely inconsistent or non-existent policies across the province.”

I just spoke to Alison Morse, a parent member of the Minister's Advisory Council on Special Education, and she told me they hadn’t been able to make headway on a Ministry policy.

It’s been 11 years since my 4-year-old son was strapped – unbeknownst to me – into a chair so he couldn’t stand up. Had I arrived a little later, would the teachers have told me that they put him in the chair? They weren’t obligated to.

How can regulating the use and reporting of restraints and seclusion in schools not be a priority in every jurisdiction in North America?

Of schools like the one where Jonathan King died, an Atlanta lawyer in the Atlanta Journal-Constitution article says: “They’re essentially lawless.”

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