Friday, June 14, 2013

When we can't take the pain away

A week ago I took part in a think tank to develop simulations that could be used to teach rehab professionals aspects of family-centred care.

I sat at a table with another veteran parent and half-a-dozen professionals and we shared personal stories about health-care interactions where communication broke down.

By looking at some of these challenges, we hoped to come up with ideas for how to share medical information in a timely, clear, non-judgmental way that was useful to the parent given their unique story.

Mona Lee, an occupational therapist at Holland Bloorview, talked about how difficult it was to tell the parents of a young child that they needed to consider a wheelchair for the child when the parents still hoped the child would walk.

It was easy for me to imagine this scenario because when my son was young there were times when I refused to let go of a dream I had for him, even when presented with evidence that it was unlikely.

What I hadn’t really thought about was how it would feel to be the professional in that interaction. Thanks Mona! Louise

When we can't take the pain away
By Mona Lee

I work with children in our integrated education and therapy program in the Bloorview School. The program integrates therapy and self-advocacy into kindergarten and Grade 1 to ready the children to be successfully included in their neighbourhood school in Grade 2.

When students come in junior kindergarten, their parents typically have big hopes that daily therapy will boost their child’s mobility. If the child has been in private therapy, the parents have often been given the idea that their child will eventually walk without assistance.

What parents often don’t understand is the degree of independence a child needs to participate in a regular school class: to walk long distances, including outdoors or on a field trip, and if using a walker, to be able to move on their own and safely, without the assistance of a therapist.

By the end of JK here there are some children who haven’t made the functional gains that would suggest they’ll have this mobility. Their parents need to consider getting the child a wheelchair. We like to plan this so that the child has the whole of Grade 1 to “work out the bumps and glitches” and get comfortable using the device they’ll use in the community school.

We know that when students move to their local school the amount of support they get plummets.

Suggesting to parents that they consider a referral to seating for a wheelchair is the most challenging talk I have with parents.

Some parents have strong spiritual or cultural beliefs that support their hope that their child will walk. These parents may do yearly journeys back to their home country, pray and engage in other spiritual activities to keep this hope alive.

They may not hold Western values about the importance of independence. In fact, they may not realize that full independence is an expectation in our neighbourhood schools. In their culture people with disabilities may not be seen publicly, so it may be hard for them to picture their child using a wheelchair in the community.

In other cases, parents may be convinced that with just a bit more practice their child will be able to build the endurance needed to manage at the community school.

Whatever the case, I always feel anxious and almost afraid to bring up the topic of wheelchairs. Part of what we learn in school is that we’re there to encourage hope, not take it away. We’re there to support and provide what the client and family needs to keep moving forward and feeling empowered and enabled.

But sometimes I feel that I’m imposing our Western values on families. This is Canada, and here a child isn’t supposed to have a caregiver with them 24/7. If they can’t get around independently, we give them a mobility aid. But maybe the family is from a culture where there is greater interdependence. Maybe that’s their only reference point.

As a professional, it’s part of my job to explain to the family the parameters the child needs to function within in a regular school, and to explain what the reality will be in terms of the lack of supports.

As human beings we relate when we can share personal stories and be vulnerable to each other, but as a clinician I’m regulated by a college with very specific guidelines. I have to maintain a professional stance and use objective wording and that part I find hard.

Some parents are able to hear what I say, and acknowledge that we’ve tried many things over the year but their child’s present function isn’t where it needs to be.

Parents may be quite tearful and emotional, but say they knew this talk was coming.

Other parents say they’re not ready to consider a referral to seating. Some will take the referral but not attend the appointment.

Sometimes parents are at different places of acceptance and need time to come to agreement.

Sometimes we need to wait and then come back and reassess the parents’ readiness. Sometimes as the child grows larger, the parents recognize the physical reality of the situation: They can’t as easily just scoop their child up to move them.

Some children may be vocal about wanting to try a wheelchair.

I think the most important thing is that I accept what I think the parents are feeling when we have this conversation. I need to work with that, and not go in there thinking I have the magic-bullet solution, because I don’t. It’s that touch of humility. I know I can’t take the pain or struggle the parents are experiencing away.

I think this is a place where families and professionals can meet. It’s a place where we both have that mutual understanding that there isn’t a quick fix.


How well I remember the first wheelchair. An announcement to the world, instead of the anonymity of the stroller. And an announcement to my psyche, of course. One of the many moments of pretending to be plucky, upbeat; inane cheer over the color of the frame. My little girl. Trauma.

I remember when I asked my husband whether he thought our daughter would ever talk. "Sure," he said. He always carried the hope in the family. "When do you think?" I asked, idly. "By the time she's five or so," he answered. She didn't ever talk, and I don't remember the exact moment when I knew she never would.

Thank you for this wonderful interview and essay --

Thank you for this post. I, too, have never thought about what it feels like from the other side. We didn't do a lot of sign when my son was preschool age because we really wanted him to talk. (He has Down syndrome, apraxia and who knows what all else working on the speech). I really regret that now. He got an augmentive speech device 3 years ago. That was very hard as it felt like the therapists & teachers were giving up on him. It felt like *we* were giving up on him. He hated it and pretty much refused to use it. His therapist at the time wasn't familiar with devices at all and pushed us to go back to picture cards. All this technology and we're going back to picture cards? Now we have yet another new therapist and he's got an iPad and a different speech app. He uses it at school but we still struggle to get him to use it at home (the speech app I mean, he *loves* the iPad). I think because we understand him so it's not as frustrating for him here at home, he doesn't have to work at it. I'll admit, we don't push him as much as we should be to use it at home. Some days I feel like we're all going backwards.

Oh, this is such a familiar story. It was heartbreaking when we heard our daughter should be fit for a wheelchair. We knew the day was coming, but we were so scared. It was absolutely petrifying to loosen our grip on the dream that she would be able to walk. It is so hard. It will always be hard. We love our daughter and she amazes us every day, but we will always dream that she'll walk some day.

My son was fitted for a wheelchair at 8 years old after he had 2 strokes. He had been an athlete to this point so we had never seen him unable to do anything let alone walk. The conversation we had with his therapist was immediate (he was too big to carry!) and painful for both of us. She had only been a therapist for a very short time and we were one of her first patients. She worked very hard to maintain her professional composure despite my deluge of tears and this definitely challenged both of us. Anyway, there was no other choice and we both got through it. My son was roomies with two other fantastic boys and all three of them quickly bonded over their chairs and became known as the 3 Muskateers at Bloorview. Although my son did manage to eventually walk again with the help of a brace, I'll never forget the anguish I felt every time one of his team had to break more bad news to us. They have a very tough job!

Thank you for sharing this post with us, Mona. As parents, it's easy to forget that news that is so painful to hear is also incredibly difficult to share. I know that the college may have their guidelines about what language you are supposed to use when breaking such difficult news, but when you come alongside us in our humanity, it does make a huge difference. Truly.

Mona Lee, you are wonderful and thank you for sharing this with us parents. My son has been a part of the Bloorview School family for the last two years and he has made gains with the help of dedicated and loving professionals like Mona, who understand how the parents feel and present such matters with the utmost care that it deserves. My wife and I had such a hardline approach to any equipment but seeing the sheer delight in my son, as he experienced freedom in his wheelchair, washed away any fears that we had, however deep rooted they were. Over time I realized, as parents we must move forward and remember that in this existence, our children need whatever is necessary to improve their quality of life. Our egos and preconceived notions must get out of their way.

"Our egos and preconceived notions must get out of their way." Yes, that's important, and can involve some pretty tricky lessons. My daughter began dismantling my ego
when she was an infant. I used to tell myself it was a unique opportunity to put myself back together differently, consciously. Not saying I've succeeded, decades later.

My experience with the therapy at bloorview is that it is very palliative in nature-i believe the therapist my son had lacked the experience to help my son acquire the motor skill acquisition necessary for walking-without private therapy my son would not be walking today-we are currently working on running and jumping--he is eight and did not take his first steps until he was 5-conductive education makes sense it is a wholistic approach that believes a person is designed to move in whichever way possible-to put a person in a wheelchair all day does not make sense-western values or not-sitting all day is physiologically terrible for the body-thinking has to change-sooner or later as we age most of us will lose our independence and hopefully our caregivers will not seat us in a wheelchair all day cause my legs and hip flexors get tight driving 2 hrs to the cottage!!! western thinking sucks......

When my son was 2, I took an article into Bloorview showing that children with language delays benefit by being put into a power wheelchair. The seating clinic staff just laughed at me.

6 years later, I finally got him a power wheelchair through the CCAC. He loves the independence and yes, after having the chair for a year his language skills did indeed improve.