Homecoming: it's bittersweet

Remember I said we had 30 stairs? I was wrong. It's 29. And the ambulance drivers had never seen anything like it. There was no point getting the stretcher out because they couldn't carry it up the stairs. So they picked Ben up in the blankets he was lying on and carried him in what, from a distance, looked like a body bag.

It was exciting to see him make his ascent today, but once we had him in the medical bed in his room -- beside the reclining wheelchair which will be his other main destination for six weeks -- reality set in.

D'Arcy took the other kids out for a treat and I got panicky. I put my back out at the hospital yesterday and Ben's like deadweight in a heavy body cast. He needs to be repositioned frequently. Because of the way he was casted, he can't sit on a toilet so he has to use a bedpan and urinal and we've had some accidents. He's bored and uncomfortable and at times demanding. "I hate my cast" is one of his favourite comments on his iPod.

I'm struck by all of the parents who need to lift and physically care for their children all day long. How do you do it?

The stress and exhaustion of the last week are playing out between D'Arcy and I. We seem to have fallen back into the "roles" we played when Ben was much younger and had repeated health problems and hospitalizations: I magnify everything, and he minimizes everything. I feel he isn't taking things seriously enough, and he thinks that if I'd just calm down, everything would be fine.

There isn't any redeeming quality to physical pain. I know we've talked a lot about accepting our children with disabilities, but that can never mean accepting pain. Ben had periods of terrible pain this week. I listened too many times to other children on the unit crying out: "No, stop, you're hurting me" for what seemed like an eternity. It made me feel so small and weak.

At one point I sat in the hall when a team was having great difficulty catheterizing Ben, who was being held down by D'Arcy, and I tried to do Tonglen meditation, which you may be familiar with if you read Buddhist nun Pema Chodron. I breathed in all the pain and fear, and I breathed out peace and comfort. In and out.

But Ben screamed till he was hoarse and finally I had to go in and say "I can't do this anymore." They gave up and called the urologist.

Pema talks about using our pain to develop greater compassion for ourselves and others. Perhaps that's possible for adults. But when I was in hospital this week, pain in children seemed crushing, not character-building.

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He made it

I wrote this post yesterday, but had trouble with the photo. Ben continues to do well today although he's already asking when he can get "up" and unfortunately that won't be for six weeks! He still has an epidural infusion which is keeping him pain-free and an IV, which he can't wait to be rid of. He was able to sit in a reclining chair for a while and had some pizza tonight.

He made it

My son Ben had his hip and knee surgery today and I'm very grateful to be on this side of it! Here's a picture of him after he was taken from recovery up to the room he'll be in for a few days.

I wrote about how anxious I was before this surgery and many of you sent kind wishes, prayers and encouragement. Thank you for your support!

Ben was receiving excellent pain medication (an epidural) when I left tonight and he was very mellow and comfortable and enjoying watching movies on his portable DVD player (D'Arcy is staying with him). He has a large cast around his trunk (I call it "armor") and a mix of cast and bandaging on his leg that's huge. It was overwhelming to see him in the recovery room because he was also catheterized, which I didn't expect, and had so many wires and leads. Apparently he got very cold during the surgery so they had him under what looked like a giant inflatable mattress that was heated. When we first came to his bed, we couldn't see his head.

Surprisingly, Ben's biggest concern in recovery was whether he could go downstairs to the playroom to use the computer and what he was having for dinner (unfortunately, nothing but clear fluids!) He's also anxious about when the catheter can come out and when he can go home (hopefully Friday).

The day was challenging early on when Ben's surgery was delayed two hours. It wasn't a big deal for Ben, who was absorbed with video games, but it was hard for us old folks.

When it was our turn, I accompanied Ben into the operating room to be put to sleep. It was terrifying for both of us. Ben's always gone on his own in the past, but when he had a recent CAT scan, I was allowed to rub his back while he inhaled the anesthetic medication through a mask. I've never been in an OR before and I was taken aback by how massive it was, the imposing lights, the technology, and all of the frightening "materials" laid out waiting. Ben was scared and refused to get out of his wheelchair. We negotiated that I would bring him a surprise when he woke up later. We went to pick him up and transfer him to the bed and the anesthetist accidentally banged his head with her stethoscope. Unlike the CAT scan folks, who took time with Ben and showed him all the equipment first and cheered him on, she pulled the mask out from behind his head without showing it to him. Of course he balked. I tried putting the mask on Ponda Babba, his favourite Star Wars character (wearing the orange jacket in photo above), but the staff weren't patient and placed it on Ben's face. He resisted and it was horrible to force him to inhale while he shook his head and thrashed around. When he passed out we lay him down and I bent over to kiss his cheek and breathed in the foul smell of the anesthetic. They took his hospital clothes off and it was wrenching to leave him lying there so vulnerable.

I wonder why they aren't able to put children to sleep in a "safe" room and then take them to the OR? So much is done to make the rest of the hospital child-friendly, but it's cancelled out by the trauma of the OR.

The operation took about five hours and the surgeon was pleased with how it went. They removed the benign bony growths, called exostoses, and repositioned and realigned the hip that wasn't growing properly because of the mass inside. The doctor was a very caring person and reassured us that things had gone well.

The medical fellow who spoke to us in the waiting room said dozens of exostoses all over Ben's body showed up on the CAT scan. It's possible the ones they removed today will grow back. However, hopefully that won't be in a matter of months, but years.

The nurses in the recovery room and on the unit were professional, skilled and compassionate.

Thank you so much for all of your well wishes. They are truly appreciated!

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Dad wins disability funding appeal

In February, an Ontario tribunal ruled in favour of Peterborough resident John Wood after funding for his daughter’s medical needs was cut based on an income cap related to the Assistance for Children with Severe Disabilities (ACSD) benefit. The ACSD program helps parents with extra costs of caring for a child with severe disability – such as travel to doctors and hospitals, wheelchair repairs and assistive devices. The benefit ranges from $25 to $440 per month. John’s daughter Grace, 11 (above), has DiGeorge syndrome, multiple disabilities, and life-threatening heart, lung and airway problems. Extraordinary costs for Grace’s care totalled almost $23,000 in 2009 as a result of multiple trips to Alberta for surgery that wasn’t available in Ontario. I interviewed John about his appeal.

BLOOM: Describe the unusual costs related to Grace’s care.

John Wood: I’m a factory worker, and when I take Grace to Toronto for one hospital appointment I have to take the entire day off and that day’s pay is lost. When we’re going two to three times each month, those expenses add up fast. Grace is on a bipap at night, and she has one mask that’s replaceable each year under the Assistive Devices Program, but the masks don’t last that long. A new one costs $140 and my health insurance only covers a small portion. Next week we’re flying to Alberta for Grace to have an airway surgery not available in Ontario.

BLOOM: When was your funding cut and why?

John Wood: Last year we were told that our funding of $430 a month was being taken away because we made too much money. The current income cap for a family of four is $63,421 – that’s gone up less than 5 per cent in 12 years when inflation has increased 26.2 per cent. The Ministry of Children and Youth Services was well aware of our extraordinary expenses and its decision was cut and dry: no benefit. The first step was to request an internal review. As a result of that, they gave us back $25 a month and a drug benefit card, but I have good insurance at work so the benefit card didn’t help us. I got so angry I said I’m not going to let this go and I filed my appeal.

BLOOM: How difficult was it to prepare your appeal?

John Wood: I did it on my own. I asked the Ministry several times for a copy of their guidelines and they wouldn’t supply them. I found the Ontario Disability Support Program Act and read the ACSD section 224/98 very carefully. I based my appeal on the law.

BLOOM: What did you learn about the difference between legislation governing the ACSD benefit and eligibility guidelines set up by the Ministry?

John Wood: Guidelines are bound to law and law is not bound to guidelines. In order to qualify under the ODSP Act, there are four criteria: The child must have a severe disability; reside with the parents; the parents must be primary caregivers; and the parents must have extraordinary expenses. Subsection 3 (1) of the ACSD Regulation 224/98 says that the director shall consider, among other factors, household income. It doesn’t set a ceiling for income in order to be considered eligible. Income is only one consideration in determining eligibility for the benefit and the Act clearly states that all factors must be considered. So income alone does not preclude eligibility.

BLOOM: Has the Ministry taken steps since the ruling to make parents aware that income doesn’t dictate eligibility?

John Wood: No. I met with Minister Laurel Broten two weeks ago and I told her that hundreds of Ontario families are being squeezed out of this program simply because they’re not adjusting the income caps with realistic values. I thought I was making ground, but the next day the Minister’s assistant was quoted in our local paper saying the outcome of the tribunal and my meeting would not result in a review of anything.

BLOOM: What advice would you give families who’ve been turned down for the benefit based on income?

John Wood: It’s a two-step process. Keep the letter that denied the benefit, because it has a file number on it. Request an internal review from the Ministry in writing. You can get the address from their website. State why you believe the denial was wrong and be very specific about why your expenses are extraordinary. If you are again denied the benefit or if you’re given a ridiculously low amount, apply to the Ontario Social Benefits Tribunal for a formal appeal. Once you register with them, you’ll receive a kit to fill out. I strongly advise parents to request a phone hearing because the in-house hearings can take a year or two to be scheduled. I’d be happy to talk with any parent about this. We’ve got to be strong advocates for our children right now. We have to keep our eyes open and read and know what’s going on. I find some parents are reluctant to claim dollars for an expense related to their child’s disability because they feel they’re begging. These are benefits we paid for through our taxes long before our children were born.

BLOOM: How did you feel when you got the result?

John Wood: I was extremely pleased. I felt vindicated. Within two weeks the benefit was paid back retroactively.

As part of its ruling in John’s favour, the Ontario Social Benefits Tribunal wrote: "The (income ceiling) chart is a self-imposed guideline and is not law. While an income table may be relevant in some circumstances, the Tribunal is not bound by it and must consider the whole picture. In this case, it is better for the health of the child, the family and society as a whole that the child continues to receive the medical care necessary.” When he has time, John writes about parenting at Dance With My Daughter. Thanks John!

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Preparing for surgery

Last weekend, I was weepy. "I don't have enough courage," was all I could tell my husband. I had no patience and snapped at my kids.

I woke in the middle of the night on Wednesday with a sore throat and panicked. I can't be sick, I told myself. I CAN NOT BE SICK. I went to the washroom and grabbed an anti-bacterial mouthwash I'd been given for a prior dental surgery and gargled like a maniac.

I kept eating. Even when I wasn't hungry. I'd go downstairs and take out the lemon loaf and cut myself more slices. I munched on smart popcorn and bars of chocolate. When I'm eating my mind is busy. I can pretend I have something to do and really I'm not worried about the surgery my son is having this Tuesday.

Ben has had more than a dozen operations, but many of them were minor.

His surgery on Tuesday is to remove two benign growths of bone – one sticking out of his knee, the other on the inside of his hip. Both are painful and the one in his hip is pushing it out of of the socket, causing him to limp. We carry him up stairs on our backs now. The knee surgery is straightforward, but the hip one is complicated. I'm not sure how they take out the hip bone so they can excise the growth on the inside, then put it back in, and I don't want to know. The OR is booked from 10:30 to 5, which seems like an awfully long time.

He'll wake up in a spica cast the full length of one leg, around his trunk, and possibly down part of his other leg and he'll be in bed for six weeks, till the cast comes off. This wasn't clear to me until we met with a child-life specialist who came to prepare Ben this morning. I'd been told he couldn't put any weight on his feet, but no one had explained that in practical terms, he'll probably be propped up on a medical bed, unable to use a regular toilet.

Ben will be at SickKids for three days after his surgery. He could go to Bloorview as an inpatient following that for a number of weeks. "When home?" he keeps signing, and I didn't have the heart to tell him about the potentially long stay at Bloorview. "Three days at SickKids," I said, "and then you may go to Bloorview, or you may come home, we'll have to see." It makes me cry to think of him out of his comfort zone in hospital when he can't speak and advocate for himself. I'm hoping we may be able to get a medical bed and other equipment into the house (did I mention we live in a house on a hill up 30 stairs?).

The child-life specialist showed Ben a chart with a row of 10 faces. On one end, a happy face indicated no pain, and on the other, a distraught and crying face indicated extreme pain. When asked to rate the pain in his leg, Ben surprised me by immediately pointing to the most extreme of faces, sad and crying. He's been asking to have his leg "fixed" for months. For a while we were giving him Tylenol every four hours – as directed by a pain specialist – but it didn't seem to have a noticeable impact.

The main goal of the surgery is to alleviate pain. There's always a chance that the boney tumors will grow back. And he may need hip replacements in the future. Ben has pointy bones instead of balls at the end of his hips. When D'Arcy saw them on an x-ray, held up against a picture of a typical kid's hips, he couldn't fathom how Ben walked.

D'Arcy and I had a "black humour" moment the other day. We imagined the surgeon coming to us in the waiting room mid-operation to say he'd discovered something unusual. This happened when Ben was having a surgery to widen his nasal passages. The doctor came out to tell D'Arcy that Ben had anatomy he'd never seen before. He was baffled and said he wouldn't touch the extra tissue he was referring to. Anyway, there's always a fear lurking that surgeons will go in and discover something so structurally unusual that they can't do what they intended, or it doesn't turn out the way hoped.

"I think we'll have to amputate" we imagined him saying, and we laughed, because in a bizarre way nothing surprises us anymore.

Note to self: Try the meditation tape.

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Seeing ourselves in media

Happy Wednesday!

Here are some interesting items about film, TV and news related to disability or difference.

"When Carl Met George" is a new storyline in the PBS television show Arthur that features Carl, above left, a new friend of George's who has Asperger syndrome. The first episode aired April 5. Did anyone see it? Tell us what you thought!
Tying Your Own Shoes is a beautiful, animated documentary about the lives of four adult artists who have Down syndrome. This Canadian film "combines self-portraits with first-person narratives to challenge widely-held stereotypes." Read more or purchase it at the link. My wonderful friend Madeleine shared it with me.
Six men and women speak about living with an autism-spectrum disorder in this New York Times Patient Voices series.
A new study of people with facial paralysis related to Moebius syndrome finds that people with the disorder had no trouble at all recognizing others’ expressions. Lead researcher Kathleen Bogart, who has the syndrome, talks about the study in: Seeking Emotional Clues without Facial Cues.

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Neckband turns sounds into computer clicks

Corvin Cioata (above right) is many things: An explorer, a skier, a Scooby Doo fan. Like his mother – a software developer – he’s nuts about computers. But until last year, the nine-year-old couldn’t use one.

Corvin has involuntary movements related to cerebral palsy that make using a mouse impossible. He tried finger and eyebrow switches but couldn’t control them consistently. An off-the-shelf, microphone-based sound switch misfired in noisy environments and exhausted him because it only responded to loud vocalizations.

Then Corvin tried the Hummer – a novel switch developed at Bloorview that detects vocal-chord vibrations when a child makes a sound or hums a tune and turns them into computer functions. “It was the first switch he could easily access,” says his mom Varinia.

Wearing a lightweight neckband, Corvin demonstrated the switch while using a story-making software. The program scanned different storylines related to a princess on an adventure. Corvin clicked his choices by making a sound such as “uh” or “oh” when they appeared on the screen – and showed his pleasure with an awesome smile.

“Certain sounds we make and hums cause the vocal chords to vibrate in a pattern that recurs at regular intervals,” says Tiago Falk, a postdoctoral researcher in biomedical engineering at Bloorview and the primary inventor (in photo above).

A sensor the size of a nickel embedded in the neckband sends signals to a microcontroller that detects the pattern and activates a mouse function – such as turning a page in an online book, clicking an icon on the screen, or moving the mouse left or right.

The Hummer is perfect for children who don’t speak and have physical disabilities that make conventional switches challenging.

A big advantage is that the sensor doesn’t respond to background noises, coughs or other user-generated noises – which can cause false responses in microphone sound switches like the one Corvin initially tried.

Vibrations are produced naturally during voiced speech or hums – no matter how loudly or softly the child vocalizes – so even quiet sounds or silent hums activate the Hummer. In contrast, microphone switches can fatigue users because they require speech of a certain volume.

The current Hummer is a single switch operating one computer function.

A new version is in the works that will allow users to activate a variety of functions based on differences in the pitch and duration of what they say and hum. For example, a quick, low hum might move the cursor right, whereas a slow, high-pitched word would translate into a click.

In future, the system could be used to control voice technology and electronic devices like a TV and lights and to drive a power wheelchair.

“In the short term, it allows Corvin to do school activities like reading and journal writing,” Varinia says. “And in the long-term, it opens the door to a communication device and to accessing environmental controls so he can be more independent.”

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U.S. funds Bloorview trial of Oxytocin in autism

Given World Autism Awareness Day on Friday April 2, here's some exciting news about a clinical trial set to start at Bloorview. Louise
U.S. Department of Defense funds autism research at Bloorview
Bloorview has received an $805,000 grant from the U.S. Department of Defense to conduct a randomized clinical trial to see if Oxytocin – a hormone released during women’s labour and milk let-down – improves social functioning in teens with autism.

The United Nations hopes to raise awareness of the disorder as a global health crisis on World Autism Day April 2.

The Oxytocin grant is one of four Bloorview-funded trials targeting social function, learning, motor skills and global functioning in autism – the only clinical trial program of its kind in Canada.

Animal research and pilot studies in adults with autism suggest Oxytocin plays a role in social memory, trust and attachment.

“Given that people with autism have difficulties in those areas, and we’ve had no success with other medications, it’s time to look at whether Oxytocin has therapeutic potential for improving social deficits in autism,” says Dr. Evdokia Anagnostou (in photo above), the child neurologist who heads up the clinical research program in autism at Bloorview.

The first phase of the three-year study will identify the optimum dose of the hormone. The second will be a randomized control trial of 60 adolescents with autism aged 12 to 18, who will take the hormone in a nose spray in the morning and afternoon for three months. Thirty teens will participate at Bloorview, and 30 teens will take part at the University of Illinois at Chicago. “The Chicago folks have a lot of expertise in measuring Oxytocin in the blood and in doing genetic studies of Oxytocin in autism,” Dr. Anagnostou says. “We have more of the clinical trial research expertise, so it’s a nice partnership.”

Traditionally, research has looked at symptoms that autism shares with other disorders and borrowed medications used to treat those disorders to see if they work in autism. “It’s easy to be sloppy in matching and to gravitate to what is easy to do, what you know is feasible to do, but not really what the relevant question is,” Dr. Anagnostou says.

“We’re looking at the basic science data as it pertains to autism and translating those findings into clinical research. We start with genetics and animal models and control trials to understand what regulates normal social function. Then we study how the system is disturbed to produce abnormal function, and how it can be manipulated to mediate the disturbed part. It’s a completely different approach.”

Dr. Anagnostou is cautiously optimistic about the study. “This won’t cure autism. But if at the end of the process we’ve found a compound that has a direct effect on social function and social skills – and that can make existing social-skills interventions that much more effective – the impact will be huge.”

Dr. Anagnostou is author of a small pilot study in press that shows Oxytocin improved social cognition and repetitive behaviours in adults with autism.

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