Armadillo update

Thanks everyone for your wonderful ideas and links.

Alas, I was not able to come up with an armadillo costume. I did call some costume places and Ben and I went to one today in the hopes that they would help us piece something together that could pass as an armadillo.

No luck. We were told that that unusual-looking creature would be a "custom-build" and would require lots of advance preparation.

So, instead, Ben has decided to be a musketeer. He has one of those cool hats (see above) and a burgundy cape, some red gloves and a flintlock pistol replica (I think that's what it's called).

What are your kids wearing??

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Armadillo anyone?

Ben has been 'thinking' on a Halloween costume. It had to be an animal, he said.

Today he decided. At first he told me it was an anteater -- he told me this by finding a Zoboomafu show about anteaters.

Then, just as I was putting out word that I needed help on an anteater costume, he brought me the voice software on his iPad to let me know that it wasn't an anteater after all -- it was an armadillo that he wanted to be.

Even though Halloween is Ben's favourite holiday, I always find myself about a week away from the event in the same situation: in search of an unusual costume. Where on earth do you find an authentic looking armadillo costume -- one with scales that look like armour?

Ideas? Anyone?

There is a Halloween dance at Ben's school this Friday and he wants to go.

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No more accidents!

Many of you remember Tommy Glatzmayer (left) and the book he wrote with his mom Nathalie Wendling: Melanie and Tommy have two pet rats and one syndrome.

Nathalie just sent me this exciting update on her daughter Melanie (right), 11, who has Cornelia de Lange syndrome. For years, Nathalie has tried to toilet train Melanie. This summer it happened. Nathalie tells us how:

Over the summer, I desperately tried to toilet train Melanie -- as I do every summer.

She has not worn a pull-up since 2005, but we needed to bring her to the washroom every two hours. She would have a few void accidents weekly, but most of her bowel movements were accidents. In August, I decided to duct tape a night-time potty training buzzer mechanism to her underwear during the day. She would wear a normal pair of underwear and then the second pair would have the duct-taped mechanism, so it would not touch her skin.

At first, I was very depressed, as the device was ringing all day. I was convinced her brain was not capable of sending the signals. But I decided to leave the mechanism there anyway. It was relieving some stress from my life. I didn't have to force her to go to the washroom -- the buzzer was doing my work. After 15 days, Melanie was completely toilet-trained. Suddenly it was September and back to school.

I tried meeting with the teachers to explain about our success and the buzzer, but no one had time to listen. No one wanted to listen. I was made out to be some kind of crazy mom with a crazy agenda.

The staff continued to bring Melanie to the washroom every two hours and they wouldn't stop. It was confusing her brain and she was having many accidents.

We pulled her out of school at the end of September and set up a meeting. Our team consisted of a psychologist and a speech pathologist with some medical evidence written by a doctor that Melanie was physically capable of knowing when she needed to go to the washroom. Both professionals have known Melanie for over six years and believed she was capable of requesting to go to the washroom

What we discovered was that Melanie was terrified to let people at school know she had to use the bathroom. She didn't know how to interrupt the teacher or interrupt her friends. Melanie can barely communicate, never mind find the confidence to interrupt.

After a few meetings, some professionals from the school board got involved and the board said it would make a plan of action for all staff to follow by the end of October. 

We sent Melanie back to school last Monday on the condition that they follow our plan of action until their plan had been formulated. It was so difficult for Melanie. She was so stressed. We rehearsed and rehearsed and rehearsed every single scenario at home. I spoke about fear, friends, teachers. I spoke and spoke and spoke. I wondered if Melanie understood any of it.

I had not slept in two months. I knew this was my last chance of ever training her. The school board could decide that Melanie wasn't ready and order her back to the washroom every two hours. This was it. The time was now. I could smell, feel and taste Melanie's success. I knew she was ready, why would no one believe me?

This was a very important week in Melanie's life. Melanie had to find the courage: the courage she never had before, the courage she did not know she had.

October 17 - Melanie went to the washroom once.

October 18 - Melanie went to the washroom once.

October 19 - Melanie went to the washroom once.

October 20 - Melanie went to the washroom four times.

Ocotber 21 - Melanie went to washroom five times.

Melanie found the courage and she loved it. What a show off! She was so proud. We are so proud.

Is it finally my turn to walk out the front door with no diaper bag? Has that time finally arrived for me? Is it real? Is it really happening?

My advice to other parents? We have tried three different buzzers. The best one is available at Costco pharmacy. It has a rubber tip (this part is taped to underwear). You must order it at pharmacy counter and it is ready for pick-up next day. I would recommend doing this intervention during the summer as the students and staff at school found the buzzer to be very distracting and apparently even psychologically disturbing. 

Please learn from our mistakes and schedule a big meeting with all school staff before introducing the buzzer in the class environment. All staff and students need to be properly informed and prepared.

I am convinced we would not have had success without the buzzer. I desperately tried everything for so many years. The buzzer enabled Melanie to make the connection.

We took this picture this morning. The buzzer is kept in a little pouch (cell phone holder). The pouch is pinned to her pants with a large safety pin.

Melanie was very excited to take this picture today. She understands and is proud of her accomplishments.

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The Anti-Romantic Child

An excerpt from this book appeared in Newsweek a few months ago and was blogged about on the Chronicle of Higher Education. Here's what Publisher's Weekly had to say about Priscilla Gilman's new memoir. Have you read it? Louise 

The daughter of literary agent Lynn Nesbit and the late theater drama critic Richard Gilman crafts a beautifully sinuous and intensely literary celebration of the exceptional, unconventional child. Her son, Benjamin, was born when she and her academic husband, Richard, were in graduate school at Yale, where she was still working on her dissertation on the Romantic English poet William Wordsworth. As "Benj" grew older and failed to hit the usual milestones of children his age, exhibiting brilliant but "odd" behavior such as an obsession with numbers, aversion to physical affection, fastidiousness, inability to feed himself, and echolalia, Gilman realized these were "uncontrollable manifestations of a disorder," namely hyperlexia. Falsely reassured by their well-intentioned pediatrician, the couple finally sought professional therapists, and after they relocated to Poughkeepsie, N.Y., where both got teaching jobs at Vassar, Benj made marvelous progress in school. Throughout her narrative, Gilman extracts from many of Wordsworth's poems, which comment on innocence and loss and gave Gilman tremendous succor during Benjamin's early development, making for both charming and studious reading. Her thoughtful memoir involves the breakup of her marriage, rejection of an academic career, and move to New York City to work in her mother's literary agency as much as it delves lyrically into the rare, complex mind of the unusual child.

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Goodbye mom, hello therapist

A Ryerson study of 20 mothers of children with autism looks at how mothers sacrifice their roles as parents, spouses, friends and professionals in order to become full-time 'therapists' to their children.

"Parents are talking about this, but it's still not highlighted in the literature," said Dr. Nancy Walton, an associate professor at Ryerson's School of Nursing and ethicist who was speaking at a Bloorview Research Institute presentation yesterday.

Through qualitative interviews with 20 women, most of whom identified themselves as their child's primary therapist, Walton uncovered the following themes:

While professionals tell parents early intervention is key, an autism diagnosis typically meant that publicly-funded therapies were cut off, and the child was wait-listed for services. One mother noted that in order to get her child help at the age of four, he would have had to be diagnosed in utero. Another said that her non-verbal child had been on a wait list for speech since 20 months. He remained high on the list and was about to turn five.

Mothers took on the role of active therapist because publicly-funded therapy was rationed in inconsistent blocks or non-existent and they felt time was running out; they saw their child as a unique individual that they knew best; and through networking they heard about positive results from other parents who delivered most of their child's therapy. A therapist who wasn't able to provide the amount of therapy the child needed would offer to 'train' the parent to do the therapy at home. In addition to therapists, mothers viewed themselves as case managers in co-ordinating their child's team of physicians, specialists and therapists. Fifteen respondents did not work outside the home and a number described therapy as their new 'career.'

In order to deliver a gruelling 48 hours of therapy a week, moms integrated therapy into their everyday life, often dedicating a room in the house to the task. Interaction with their child no longer involved any 'down-time.' Every activity became purposeful and therapeutic, "making it difficult to be a mom," Walton said.

Respondents described their therapy role as more than a full-time job. They felt guilty if they weren't teaching their child every waking hour. The moms reported exhaustion and an inability to fulfill their role as spouses and to provide any one-on-one time to their other children. The respondents had no social life outside the home and considered their child's therapy their work life.

On a positive note, doing therapy often gave the moms the first effective way to interact with their child and when their child made progress, they felt rewarded.

The respondents identified the lack of resources to help mothers address exhaustion and take care of themselves.

They felt decisions about services and cut-off dates were arbitrary and ad-hoc. Walton, after analyzing the data, expressed concern for vulnerable mothers of children with autism who were new Canadians, didn't speak the language, had low literacy, or were single parents or isolated.

Dr. Evdokia Anagnostou, a neurologist and clinician scientist who focuses on autism at Holland Bloorview, asked whose mandate it was to protect the mental health of parents given the high levels of stress.

Walton said that the mandate may fall within our commitment to delivering family-centred care.

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Notes from a dragon mom

Don't miss this piece about parenting a child with a terminal illness in the New York Times:

Notes from a dragon mom

"No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t."

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Listen to the children, ethicist says

We underestimate the ability of even young children to participate in health-care decisions and need to recognize them as part of the decision-making team with their own preferences, said Franco Carnevale, a Montreal nurse, psychologist and clinical ethicist speaking at the 2011 Canadian Association of Pediatric Health Centres Annual Conference yesterday in Ottawa.

“The child has not been on the radar as a recognized decision-making agent,” Carnevale said. “I’d like to see a paradigm shift from adults making decisions about children as moral objects to seeing children as moral subjects with their own insights and perspectives on what’s right and wrong, what’s just and unjust, and what’s good and bad.”

While he doesn’t view children as independent decision makers he says physicians and parents have an obligation to provide them with information adapted to their understanding in an attempt to solicit their “willfull cooperation” in a treatment plan.

“We have a tendency to underestimate children’s capacities to participate in decisions,” Carnevale said. “Those decision-making abilities can develop better in children if we engage them earlier on, and children appreciate having a say about their treatment plan.”

Carnevale said professionals tend to overestimate or underestimate the burden of a particular treatment for youth. For example, he spoke about a 4 1/2 year old girl on long-term ventilation who viewed her pap machine in the same way as an adult might view eyeglasses. “She called it ‘her pap’ and she likes it and is happy it made her feel better.”

On the other hand, he spoke of a 15-year-old teen who opposed having a defibrillation device implanted in his chest because the resulting bump would harm his body image.

By tailoring information to different levels of understanding and listening to the child’s wishes, we communicate an “underlying respect for the child’s dignity,” Carnevale said.

This is important whether or not the child has a developmental disability or can verbalize their wishes, he said.

Carnevale was speaking during a town hall that was moderated by Dr. Brian Goldman, host of the CBC show White Coat, Black Art.

Dr. Margaret Lawson, a pediatric endocrinologist at the Children’s Hospital of Eastern Ontario, echoed the importance of children and parents to healthcare decision-making and said “families are the most underutilized resource."

She spoke of a shared decision-making model in which two-way communication occurs between two experts: the doctor and the family. “You need expert knowledge about the condition... and you need to know how the family feels about risk and what their preferences and values are.

Lawson said a decision tool developed at CHEO “helps take families through the process of making an informed decision that is consistent with the family’s values.”

This includes identifying treatment options, benefits and harms, and the family’s values, including which benefits and harms matter the most to them.

Dr. Lawson emphasized that patient engagement is not just ‘parent’ engagement and the child’s voice is essential.

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