It goes everywhere

Many of you asked for the make of this all-terrain wheelchair yesterday. I spoke to the vendor today, and it's a Terratrek by Motion Concepts, available in Canada and the U.S. (and I'm not sure where else).

I've been able to push it through sand and across the shallow part of a rock-strewn lake and I know it was used in all kinds of conditions at camp. Ben is very light, so I'm not sure how challenging it is to push with more weight. For us it's a smooth ride and the big wheels just pop on and off.

Now for a couple more links:

Here are some fascinating paper and poster abstracts that will be presented at the fifth International Disability Studies Conference at Lancaster University Sept. 7-9. Has anyone ever attended this conference?

Tekeal, from Bern, Switzerland, recommends Yo, tambien (Me too). This film, about a university graduate with Down syndrome who falls in love with a colleague, "is one of the most surprising films of the last year with two spectacularly good protagonists," according to the website of the International Film Festival in Rotterdam.

And my wonderful cousin Pamela in Bath, England, recommends this BBC documentary: Small Teen, Big World, about a teenager with dwarfism.

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This and that

This all-terrain wheelchair goes everywhere! It's the one the Sunshine Foundation rented for us for Ben's time at camp. It's got thick wheels with big treads. It's a dream to push and I've been able to drive it over sandy beach, muddy path and in rocky water. We've rediscovered Cherry Beach on Lake Ontario and it's awesome to be able to walk through the rock-strewn water wearing a pair of flip-flops and pushing Ben. Our dog, Mr. Dumpling, likes it too. The wheels pop off for easy transition into the car -- even I can do them!

There is so much great content out there on disability issues. Here are a few things that caught my interest:

Wretches and Jabberers looks like a fascinating film coming to some theatres in the U.S. this fall. Two middle-aged American men with autism embark on a tour of Sri Lanka, Japan and Finland to change attitudes about disability and intelligence. Both men were socially isolated with limited speech until they learned to type as adults. Click on the picture of the globe to watch a mind-bending trailer.

Love that Max is one of my favourite blogs, and today Ellen continues her series on children with special needs around the world with a focus on Greece, where Emma writes about life with her son Dimitri, who has Angelman syndrome. What struck me was the lack of publicly funded accessible school services in Greece, necessitating private school and a four-hour total journey! Four hours in transit! However, I should note that our public school board has okayed kids with special needs spending up to three hours a day on the bus. Can you imagine what would happen if parents of typical kids entering kindergarten were told their kids would be 'bussing it' for three to four hours a day?

A touring gallery of Outsider Art, which includes work by people with disabilities, is on show in Turin, Italy.

Surprising revelations from a woman who finally gets to know her middle-aged brother, with an intellectual disability, after their mother dies: My brother's keeper from Modern Love in the New York Times.

Creative, non-fiction essays by young people 13 to 30 with disabilities describing growing up with a disability are being sought for a book-length anthology.

Kidneys and Eyes is written by 'the other' Julia Roberts, mom to two children who have had kidney transplants and long hospitalizations (and also have an eye disorder). Talking About When He Could Die is a recent sobering post.

Classics professor Kristina Chew is writing a book about raising her 13-year-old son with autism. Her blog, We Go With Him, chronicles some of the marathon bike rides dad and son go on. She explains more about her blog in Autism: Not exactly heaven on earth, but not a daily hell.

And Woodbine Press sent me Managing My Money, a workbook for teaching youth with intellectual disabilities banking and budgeting skills. I think this could be useful for all my kids.

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'Where dreams are made of'

My daughter and I were in the car when rapper Jay-Z's "Empire State of Mind" came on.

In New York,

Concrete jungle where dreams are made of,

There's nothing you can't do,

Now you're in New York,

These streets will make you feel brand new,

the lights will inspire you...

"It's Salamander's song!" I gasped, remembering the young man who hung out with us in the teen lounge when Ben was an inpatient. My younger son confused his name, so he became Salamander to us.

Salamander would sit at the computer, swaying endlessly to "Let's hear it for New York;" Ben would click away at a Playstation controller, being Indiana Jones; and my daughter would message friends on Facebook.

"I miss the hospital," my daughter said, with a puzzled expression, and part of me was shocked and part of me felt the same emotional pull in my chest.

Here are some of the things I will never forget about our staff and what they do:

The receptionists. They're frontline ambassadors for the hospital, like a mini-cheering squad for your child. When it's the weekend and you're bringing your child back after a visit home and the last place you want to be is a hospital -- they greet you like family.

Compassionate, skilled, hands-on nurses, who mentor exceptional, eager nursing students. They take the time to know my son, even though it's hard for him to communicate.

Handmade heating packs: wrap three damp facecloths in a blue pad, secure with orange hospital tape and heat for a minute in the microwave. They were soft, moulded to the body and carried a bit of nursing magic. Flannel blankets, fresh sheets, comfy towels.

Medicine 'care packages' when you first go on LOA. A nurse would disappear into a room behind the nursing station and reappear with multiple medicines apportioned out in tiny bags, each labelled.

Spotless inpatient floors and rooms. The cleaners never stop. Some call my son by name.

Take-charge physios who are able to be tough when parents would quake, pushing a child's rehab forward. An occupational therapist who fits Ben for a reclining chair and other equipment.

Child-life specialists who gave my son a sense of control when he was in a body cast, powerless: calendar countdowns; a Wii game; skeleton gloves to add to his collection ("I knew they'd come in handy at some point," she said).

A team of nurses and child-life specialists who calm my son in a specially-designed room when the orthotist cuts off his body cast so that oozing surgical wounds and bed sores can be treated. His favourite Star Wars movie plays on a big screen, flickering strings of fibre-optic lights are draped over his chest and, to my surprise, he's deeply relaxed. The body cast, cut in two, is raced up to the orthotics workshop where staff repad the inside and sew on multiple velcro straps so that the two pieces can be refastened as one.

A pharmacist who brings handouts on a medicine's side-effects to the patient's room. A doctor who comes to my office to consult on an issue.

Recreation staff who stop by each day to tell us what fun activities are on: a movie, a starry space-simulation in the Snoezelen room.

Artists who bring clay to the bedside so my son can grow his family of ghosts. Raised, accessible gardening for kids in wheelchairs on the terrace. A therapeutic-clown duo who act out a famous Star Wars scene -- on the fly, in the hallway -- for Ben. Closed captioning on the television so that my son, who has hearing loss, can comfortably watch his favourite shows.

Putting on bathing suits in your hospital room and taking the elevator down and being transported into a small heated pool where the lights are dimmed, a kaleidoscope of butterflies turns on the wall, a jet pummels your back and a gentle spray rises from the water like mist. You breathe.

The lifeguard who uses sign language. The music therapist who calls to say she'll be working with my son.

Everything under one roof. Ben even got in a trip to the dentist on the 2nd floor.

These are just some of the things for which I'm profoundly grateful.

Ben can walk a few steps now. He's weak and limps. But he does it. They've got him walking on a treadmill on bi-weekly visits to the rehab gym. He can climb stairs holding a hand. Two months ago, I couldn't imagine him ever walking again. Holland Bloorview is a hospital 'where dreams are made of.' They may not be the dreams of those who flock to Jay-Z's NYC, but they are dreams, nonetheless.

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Worlds apart

I'm happy to let you know that I've been asked to write once a month for Hopeful Parents. You can read my piece Worlds apart there today.

Hopeful Parents is an online community of parents of children with special needs. You can read a variety of posts by parents just like you or chat online with them.

I like the way Hopeful Parents describes its mandate for writers:

Let's start with what we're not about, because that paints a clear picture: we're not about providing solutions, we're not a how-to site, we don't give answers on why a condition exists or how to treat it, we don't do product reviews, we're not a news outlet or a source of information.

So what's left?

We are about YOU. What is it like being your child's parent? How do you feel when your son or daughter succeeds or fails? What affect does parenting a special needs child have on your marriage, on your relationship with other family members, on your own sense of self?

Of utmost importance at Hopeful Parents is WHAT IT FEELS LIKE TO BE THE PARENT OF A CHILD WITH SPECIAL NEEDS.

I'm honoured and privileged to introduce you to Hopeful Parents. I'm sure you'll find much there of value and comfort! Louise

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Parent presence at induction: An anesthesiologist speaks

After my last post supporting the option of parent presence when a child is anesthetized for surgery, many parents and a reader with a disability shared their experiences and opinions.

I wanted to hear the perspective of an anesthesiologist, so I posted a query on the pediatric anesthesia forum run through SickKids in Toronto. This online forum draws questions and insights from children's anesthesiologists from around the world.

I was delighted to hear from Dr. Matthias Konig of Cincinnati Children's Hospital Medical Center. Our correspondence appears below (my initial message has been shortened to omit an explanation about BLOOM). Dr. Konig directed me to an excellent review of the literature, but I need to obtain permission to post its findings. However, you'll get the gist of the results from my response to his message. Louise

Pediatric Anesthesia Forum

General Pediatric Anesthesia => General discussion => Topic started by: LouiseKinross on August 17, 2010, 06:09:31 PM

Title: Parent presence at induction Post by: LouiseKinross on August 17, 2010, 06:09:31 PM Given a CAPHC report showing parents overwhelmingly want to be present when their child is anesthetized in the OR, but wide variation in 16 Canadian hospitals surveyed as to when they do or don't allow parent presence, I would be grateful to hear comments from anesthetists as to whether you support, or don't support, parent presence, and why. In addition, I am interested in knowing if any hospitals have a separate, "safe" ante-room where children are put under before being taken to the OR. Operating rooms are horrifying places (massive lights, boxes of technology, frightening tools, people in masks). When so much effort is expended on making other experiences in the hospital child-friendly, I'm surprised that so little has been done to reduce the trauma of being taken to the OR and having a stranger put a mask over your face. I am communications manager at Holland Bloorview Kids Rehabilitation Hospital here in Toronto, and write a blog on parenting kids with disabilities. I wrote a blog related to the new report re parent presence and my own personal experience with my son, who has had multiple surgeries. We've had a number of parent replies but I want to hear from anesthetists! Why do you, or don't you, support parent presence? Does anyone have positive experience with a safe ante-room where kids are anesthetized before being taken to the OR? Or with other initiatives to make the operating room or induction less traumatic? Many thanks! Louise Title: Re: Parent presence at induction Post by: mwkonig on August 20, 2010, 01:57:41 PM Certainly a controversial topic and there probably isn't a single "right" answer to all aspects of this. One of the problems when discussing this topic is that we need to differentiate between what the parents want and what is beneficial for the child. It is easy to show that parental satisfaction increases when they are allowed to be present during induction of anesthesia. Despite the parental perception that they "help" their child during this phase, it is actually not at all proven that parental presence in fact benefits the child. This issue has just recently been reviewed in a Cochrane study and the author's conclusion was that parental presence is not superior to induction without parents, and likely less effective than premedication (see Yip et al.: Non-pharmacological interventions for assisting the induction of anaesthesia in children" Cochrane Database Syst Rev 2009: CD006447). That being said, ultimately a lot of other factors come into play, many of them simply concern the logistics involved in providing the "parental presence option". Depending on OR layout, number and type of cases, available personal, additional expense, etc., bringing all parents into the actual OR for induction may be difficult and impractical and therefore parental presence may not be offered routinely at some places. At my hospital we have induction rooms for most of our OR' so bringing parents in for induction is relatively easy since they dont have to change into a "bunny suit" or scrubs. As a consequence of this culture, parents here ususally expect to be able to accompany their child, even in cases where theit would certainly not make much sense, such as in the case of a small infant or an immature and tearful teenage parent. So many of us would like to sometimes limit this practice a bit, particularly when it seems unlikely that the child will get any benefit from it or when oral premedication with midazoloam seems more effective. Matthias Konig Title: Re: Parent presence at induction Post by: LouiseKinross on August 22, 2010, 11:31:02 AM Dear Dr. Konig: I'm immensely grateful for your message and insights. Thank you for referring me to the Cochrane review, which I read. I was surprised that in the eight studies assessing parental presence not one showed parent presence reduced child's anxiety (vs induction without parents). I did have a few thoughts. The review notes that most studies excluded children with a history of chronic illness or developmental delay. Some excluded children who had received previous surgery. I think this is precisely the population in which parents are most insistent that they be present: children with chronic conditions who endure repeated surgeries (going to the OR is not a discreet/one-time, quickly forgotten event in the life of the child/family, but occurs multiple times a year, over years) and who may have developmental disability/be non-verbal (unable to advocate/parent is their only voice). Perhaps it would be useful to study this specific population by tracking physiological indicators of anxiety at time of induction when parents are present vs. non-present. I think we also need to look at long-term impact of parental presence for this population. The studies are telling me loud and clear that my presence is not reducing my son's fear in the moments of induction. What they are not gauging is the long-term psychological impact of him knowing that I am there. Yes, he went through hell, but mom was there. What does that mean for the level of trust between a vulnerable child and parent over time? What does it mean for the parent to be able to say: I couldn't take away the fear, but at least I was witness to it. He didn't do it alone. (of course this may be irrelevant for the healthy, verbal child going in for the one minor surgery he'll have in his entire childhood). The Cochrane review notes that most children find induction very stressful. My son has had more than a dozen surgeries and it was only recently that I learned he could be given a sedative in advance (and you note that premedication was shown to be superior to parent presence in one of the reviewed studies). A parent wants full information that puts them in the best position to choose a course of action that will reduce their child's stress. The review is positive in noting that child-focused interventions (therapeutic clowns, hypnosis, a quiet, low-sensory environment, and hand-held video games) can reduce anxiety. I hope we see more studies of these interventions with the most vulnerable children -- those who have repeated surgeries and those with delays who may not be able to speak for themselves. How was the rationale made at your hospital for separate induction rooms that accommodate parent presence (given studies suggest it does not benefit the child)? Again, thank you very much for taking the time to educate me about the Cochrane review and shed light from the perspective of an anesthesiologist. I will share our correspondence with the parent readers of BLOOM who I know will find it invaluable. Cheers. Louise

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In the OR he wanted me -- not his fire hat

I remember when I first purchased my son's medical records how wrenching it was to read how he had reacted to being 'put under' when taken to the operating room.

Dec 20, 96: Anxious but cooperative.

April 14, 97: Teary-eyed 3-year-old (I wept when the record noted that he carried his beloved red fire hat).

May 27, 97: Cried on induction (Fire hat and butterfly net in attendance).

Dec 15, 97: Cried on induction.

Of course I didn't see these reactions because I wasn't given the option of being in the operating room while he was put to sleep.

So I was heartened to read a recent report on parent presence at surgical induction (and recovery) by a group that includes parents and professionals from the Canadian Family Advisory Network, the Canadian Association of Pediatric Health Centres and the Canadian Association of Child Life Leaders, as well as youth.

I found the report on Sasha Bella Stein Blumberg Forever -- a blog created in memory of a little girl who died from serious heart and liver problems. Her father Jonathan writes the blog and her parents started a fund to support family-centred care at SickKids hospital in Toronto.

Jonathan writes that an anesthetist describes induction without a parent like this: “A stranger picks you up and takes you away and puts a mask over your face and you wake up in pain."

The full report is posted on the Sasha Bella site and includes these findings:

97.3 per cent of 121 parents surveyed said it was very important or important for them to be present at induction, but about one-third had never been present.

Parents noted that they felt they had to "fight hard" or "battle" to be present at induction; that to be denied access made them question hospitals' stated commitment to family-centred care; that preparation for parents who attend an induction was essential; and that parent presence was particularly important when a child had developmental or other chronic conditions.

Just over half of 32 teenagers said they wanted a parent present with them at induction to make them feel safer, more comfortable and less alone.

A survey of 16 Canadian hospitals found wide variation in whether parents were allowed to be present. One hospital said it "always" gives parents the option, five said they "usually" do, eight said they "occasionally" do, and two said they "never" do.

Research suggests that being present does not necessarily reduce anxiety in patient or parent at the time of induction, but may reduce anxiety or other negative outcomes from the experience over time. Overall, the report says, there is agreement that parent presence is usually helpful when the child is undergoing repeated surgeries or has a mental health or developmental condition.

Recommendations included: that hospitals consider the benefits of parent presence and learn about the experiences of hospitals that have established programs; that CAPHC make information about member hospitals' policies available on its website: that parents be informed in advance whether they can be present, and, if they can't, why not; that where parent presence is offered, parents be educated in advance about what to expect and how to support their child.

I believe preparation is essential -- and can't be done on the fly in the OR. When I accompanied Ben for the first time more recently it wasn't till he was sitting on the table that a nurse said: "He may fight it. He may fall back, so I want you to be prepared. His eyes may fall back in his head."

In addition to preparing parents for what to expect -- and perhaps having a child life specialist present as a child/parent support -- it would be great if children could be put under in a "safe" adjoining room -- without the technology and tools visible -- or if hospitals looked at how to make the OR more child-friendly. Much effort is expended on the latter in other parts of children's hospitals, only to be negated by the frightening scene that awaits in the OR. The room Ben had his hip surgery in was massive, with imposing lights and boxes of technology and equipment that reminded me of power tools.

We've had anesthetists and nurses who took the time to explain equipment, cheer Ben on and reassure me, and others who just wanted to get the job done: they pulled the mask from behind him, so he didn't see it, then placed it on his mouth and held it while he thrashed.

It's painful to see your child's body fight, then slump, then become lifeless. Last time the anesthetist and nurses looked up at me expectantly -- as if to say: "This is your exit lady." I bent over to kiss his cheek and breathed in the foul gas still billowing from the mask. They took off his hospital gown and I left him there, unconscious and naked.

It's disturbing, but I wouldn't have it any other way. A child deserves to have a parent with them through that kind of horror.

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Wanted: Your stories

Last year Columbia University launched the first graduate program in Narrative Medicine, noting that "our modern medical system has all but forgotten the critical importance of stories: stories of suffering, stories of healing, stories of the relationships that tie patients to their clinicians."

In an earlier Journal of the American Medical Association article, Dr. Rita Charon, founder of the new program, describes Narrative Medicine like this: "Along with scientific ability, physicians need the ability to listen to the narratives of the patient, grasp and honour their meanings, and be moved to act on the patient's behalf."

The new masters program -- targeted to doctors, nurses, social workers, therapists and other health professionals -- includes study of literature, reflective writing and interpretation of illness narratives with the goal of better listening to, and understanding, patient stories.

I think "disability" could be substituted for the word "illness."

Here's where you come in.

If you're a parent:

1. Describe the best experience you had with a doctor, nurse, therapist or other health professional working with your child.

2. What did the professional do (or not do) to make this a positive, empowering experience?

3. What could other professionals learn from this to improve care?

If you're a professional:

1. Describe the best experience you had with the parent of a child you were working with.

2. What did the parent do (or not do) that supported you in providing the best care?

3. What could other parents learn from this?

I can't wait to hear your answers and would love to share some in the December print issue of BLOOM. Let us know where you're writing from. Thanks!

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Camp week 1

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