'I'm happy'

The two-hour session to craft a bit of a vision for Ben's future is coming up.

We're using a tool called Passport, developed by Community Living. I like its concepts. Sections include My Story; The Suitcase (the positive qualities the person brings); The Scroll (current supports), The Globe (the person's dream of what a good life will look like); The Yield Sign (barriers); An Action Plan; and The Road (the people who will offer support).

I want Ben to contribute to the discussion so thought I'd set up these sections on his communication software on the iPad.

Recently, Ben has made it clear that he's not interested in using the Proloquo. He's deleted the software a number of times and when encouraged to use it, says "it's boring." After all my efforts to get this functional, I think I need to rethink his options for expression.

But yesterday, I realized the Proloquo may be a neat way to have him contribute to the planning day. I created a "My story" category and asked him: "What would it be important for people to know about you?"

"I'm happy," he signed. So I typed in 'I'm' and he typed in 'happy' and I asked him to choose a photo that would go with this description.

He immediately clicked on the pic above of him fishing at camp.

I know he's not always happy, and his disabilities cause him great frustration and anxiety. But my heart lightened thinking that he still views himself -- overall -- as a happy person.

Maybe this process will yield other surprising results.

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Two pet rats -- and one syndrome

A delightful children's book landed on my desk today. It's called Melanie & Tommy have two pet rats and one syndrome.

It's narrated by Tommy, 6, and follows his adventures with sister Melanie, 9, as they push their pedal car around their Ontario farm and rely on two pet rats to get them out of trouble.

Tommy came up with the book idea when friends made fun of his sister, Melanie, who has Cornelia de Lange syndrome, a genetic condition.

Listen to this CBC radio interview or visit the family at http://www.2petrats.com/.

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Silent Sunday

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17 years tomorrow

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Wholehearted

I've written recently about parents who take planned breaks from caregiving as a means of respite and regeneration.

Today, a mom at Spirited Blessings posted about her own retreat, which included watching this video The Power of vulnerability. In it, University of Houston social worker Brene Brown talks about how her research into shame led to a surprising discovery: people who embrace their vulnerabilities believe they are worthy of love and belonging.

Among people who have a sense of worthiness -- as opposed to those who never feel 'good enough' -- she found these common attributes: they had the courage to be imperfect; they were kind to themselves, and then others; they were willing to let go of who they 'thought' they should be in order to be who they were; and they believed that what made them vulnerable made them beautiful. Vulnerability was seen as a necessary way of life.

These findings, Brown says, were in stark contrast to her belief in the ability of science to 'control and predict.'

When talking about courage, Brown uses the original definition (when the word first came into the English language from the Latin word coeur): To tell the story of who you are with your whole heart.

People who believe they are worthy of connection she calls wholehearted.

I think this has interesting implications for how we view disability, which is a visible form of vulnerability.

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Pediatrics article: How to get a copy

The editor of the Pediatrics article has told Barb that anyone can e-mail her to ask for a copy, and she can send them a PDF. So ... if you would like to read this journal article about the ethics of heart surgery in infants with Trisomy 18, please e-mail Barb at:

anniefarlow@gmail.com

Thanks! Louise

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Should babies with Trisomy 18 be treated?

Many of you remember our interview with Barb Farlow, who lost her baby daughter Annie (above), who had Trisomy 13, after she was rushed to hospital in respiratory distress. Barb later read Annie's medical records and learned a "not for intubation" order had been written without consent.

This month Barb co-authors a fascinating article in Pediatrics -- the official journal of the American Academy of Pediatrics -- that address the ethics of offering heart surgery to the parents of a baby with Trisomy 18. Most children born with the condition die in the first year of life.

In An Infant with Trisomy 18 and a Ventricular Septal Defect, Barb and two North American neonatologists respond to questions about whether heart surgery should be offered and, after a surgery results in complications and the child can't be extubated, whether life support should be withdrawn over the objections of his parents.

The article concludes with these comments from Editor Dr. John Lantos:

Cases of trisomy 13 or 18 highlight an area of deep disagreement. Most parents would not want an infant with these conditions. Many of them are grateful for the prenatal diagnosis that allows them to terminate an affected pregnancy. Others choose a different course and either forego prenatal diagnosis, or, as in this case, use the information to make decisions about obstectric and neonatal care. Doctors are similarly deeply divided; some feels that aggressive treatment is futile and should not be offered, and others defer to parents. Drs. Okah and Janvier reflect this professional disagreement. Ms. Farlow speaks for the parents who come down on the side of treatment. These cases raise the most fundamental questions about the value of life, the meaning of personhood, and the limits of parental and professional authority. Deference to parents is generally the right course unless the infant is clearly suffering from ongoing treatment that is unlikely to be of benefit. The doctors in this case did the right thing: they worked to find common ground. As often happens, the infant surprised everybody.

Read the article and tell us what you think. Louise

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