Some scars fade, some never will

I’m excited to announce a new partnership with Holland Bloorview’s family advisory committee (FAC). The FAC works with staff to ensure that the needs and priorities of families shape Holland Bloorview services. In order to build the capacity of our blog, a number of FAC parents have agreed to participate as BLOOM bloggers. I’m excited to introduce our first FAC guest blogger, Lori Beesley. Lori and I learned...

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Leaving an (adult) child for the first time

Another great post on the NY Times Motherlode blog today. A mother writes about leaving her adult son -- who has autism and a seizure disorder -- for a week's trip to Paris to celebrate her and her husband's 30th wedding anniversary: At home, I am the all-consumed mother of a disabled child. In Paris, I become an art and history lover. A bon vivant. A flâneur — one who saunters. In Paris, I feel young... We have never left Mickey for a week. He has left us, of course, to go – reluctantly – to a special needs summer program for three weeks. But...

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Ignoring 'typical' siblings

The New York Times Motherlode blog has an interesting piece today about a family with 4-year-old twin girls who are conjoined (right). Ignoring 'typical' siblings questions how parents of children with disabilities or medical problems balance the needs of their other children. You may want to leave a comment about how you do just that -- or try to! A much longer piece about the twins is the cover story in this weekend's New York...

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Hopeful parents, Ben's new love and links

I'm over at Hopeful Parents today: A letter to myself. Guess what? Ben is in love. With Jessie, the red-haired, cowgirl in Toy Story 2 and 3. He likes to listen to her sing that sad song "When somebody loved me" and carries an enormous Pixar coffee table book around so he can look at her picture. He also likes forwarding the Toy Story movies to the places that correspond with the photos in the book. And although he finds typing...

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Brothers

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Inclusion part two

I thought about my my last post over the weekend. Because it was written under the typical time constraints, I can see that Gina's comment was unfairly positioned as the one example of "inclusion -- or else" -- when in fact I was writing about a number of experiences I've had or discussed with other parents. It was the comments that followed Ellen's post about the merits of special-needs or mainstream camps that made me feel parents can be strident...

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Inclusion -- or else!

Months ago I wrote to a BLOOM reader who has a daughter reaching adulthood. I had just done an interview with filmmaker Dan Habib about inclusion and felt horribly guilty that Ben was in a segregated school. “Ah yes,” the mom responded. “The inclusion – or else – debate!” Now Dan never made me feel judged because my son isn't integrated. He understands the barriers. But too often I find people who promote inclusion have zero...

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The downside of special

A few weeks ago Sue Robins e-mailed me a copy of The Downside of Special: Parenting a Child with Special Needs. 'Stress, guilt and uncertainty are the norm for parents of children with developmental disabilities,' reads the deck. 'But instead of doling out pity and those can’t-you-control-your-kid? glares, one mom asks for your support and a little understanding.' Sue, a recent chair of the Canadian Family Advisory Network, told...

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Dads and depression

The story below is from Disability Scoop, an excellent online resource for issues related to developmental disability. I think the mental-health impacts of raising children with disabilities are still a bit taboo. And I was just talking to one of our dad readers about how it's harder for dads to connect with each other -- for information and emotional support. Thoughts? Louise Autism takes heavy toll on dads By Michelle Diament, Disability Scoop More than 30 percent of fathers of grown children with autism experience symptoms of depression...

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A letter to Mrs. Zhuang

Many of you read the news last week that Ran Zhuang of Boston was awarded a $7 million settlement because her daughter was born with a genetic disorder. Zhuang says she would have aborted the child, who is now 3, if she'd been offered prenatal testing. I asked Amy Julia Becker (above with daughter Penny, who has Down syndrome),  to respond, and she did, with the following letter to Mrs. Zhuang. Let us know what...

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A weekend escape

Joanne Barker wrote to me about a Moms' Camp run by Easter Seals in London, Ontario. "I'm a mom of a special needs child and I can say honestly that the Moms' Get Away Weekend is the one real break I get every year. It really is a chance to connect with other moms that have 'been there.' We let loose a little, get the much need rest we've been missing and build friendships that last." It sounds like this model would...

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She shoots, she scores!

I received this moving story from David and Carol Fisher who run a hockey team in Peterborough, Ont. for players with physical, emotional or neurodevelopmental challenges. David and Carol have two adopted sons with disabilities and their eldest daughter, who has cerebral palsy, attended Holland Bloorview's nursery school years ago. Check out a very special moment in hockey history, described below by the Fishers...

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Repetitive strain

I've been diagnosed with repetitive strain in my hands and wrists, so I'm hoping to get speech-recognition software! When I thought about the diagnosis -- repetitive strain -- I couldn't help thinking that the words 'felt' a lot like the experience of raising a child with disabilities. And the strain doesn't come just from the child's challenges, but from attitudes and physical barriers and cultural expectations about what matters. I...

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BLOOM one of best non-profit blogs

BLOOM is named one of the nine top non-profit blogs by Mark W. Schaefer, a well known blogger at {grow}, social media educator at Rutgers University and author of The Tao of Twitter. Mark partnered with  Helen Brown, whose company teaches non-profits how to raise funds, to "examine more than 250 blogs from some of the largest and most important charities anywhere. We looked for the blogs that...

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Happy Mother's Day!

Ben took this shot of D'Arcy and I at Cherry Beach! The other kids refused to get out of the car (there was an infestation of bugs). Happy M's Day! Louise ...

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'I'm not no one, I'm his mom'

I think the most engaging presentation at the patient- and family-centred care conference in St. Louis was by Jim Conway, a lecturer at the Harvard School of Public Health. Jim has held senior positions at the Institute for Healthcare Improvement, the Dana-Farber Cancer Institute and Children's Hospital Boston. Jim talked about an experience in the 1970s that woke him up to the essential role of parents in the care of hospitalized...

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What disabled children teach us

Read today's New York Times book review of Ian Brown's The Boy in The Moon. Ian is contributing a piece to the June issue of BLOOM. What disabled children teach ...

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BLOOM on NY Times blog!

Part of my recent blog "In each other's eyes, we are enough" was posted on the New York Times Motherlode parenting blog this afternoon. Please visit and leave a comment to support their coverage of families of kids with disabilities! A Perfect Baby Do we all think our babies are perfect? Did nature build us that way? Louise Kinross thinks so. Ms. Kinross’s son Ben was born with a rare chromosomal deletion that makes him look different....

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Day 1 at family-centred care training

The conference in St. Louis started with breakfast at 7 a.m. this morning. At a table for family advisors I met two parents who have been working for change for a long time: Nancy DiVenere, president of Parent to Parent USA and Juliette Schlucter, the former project consultant for FCC at the Children's Hospital of Philadelphia. Nancy told me her 35-year-old son had a stroke at birth, but was now a special-education teacher who was married. Juliette has three young adult children, two of whom have cystic fibrosis. One of the latter just...

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