'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...

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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...

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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...

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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! Loui...

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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...

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Transition update and links

Ben went to see a pediatric dentist at our children's hospital because he needs work done under general anesthetic (teeth extracted, cavities filled and teeth cleaned). He's turning 17 this weekend, and after setting the surgery date in April, the dentist was quick to point out to my husband that "we won't be seeing him again after that." It seemed a little premature, since he won't turn 18 for a whole year. That's when he's no longer eligible for pediatric services. The generally comprehensive, one-stop services we've come to rely upon will...

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Author of 'Welcome to Holland' speaks

Ellen at Love That Max has posted an interview today with Emily Perl Kingsley (left), who wrote Welcome to Holland in 1987 about the experience of giving birth to a child with a disability. Emily's son Jason (right), who has Down syndrome is now 36. "Savor whatever experience you are fortunate enough to have," she says. "Make the most of the hand you are dealt. Try to find beauty in each day if you can." Ellen's interview with Emily is worth...

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Postcard from Japan: Disability and disaster

Elizabeth Aquino posted a link to this fascinating piece by Suzanne Kamata: Postcard from Japan: Disability and disaster. Suzanne is the editor of Love You to Pieces: Creative Writers on Raising A Child with Special Needs. Her daughter Lilia has cerebral palsy and is deaf and her family lives in Tokushima Prefecture, Japan. You can follow Suzanne on her blog at Gaijin Mam...

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Triumphant return

Ben returned ecstatic from another training session tonight. He spent more time on the treadmill and used new equipment. D'Arcy said Ben really enjoyed it and felt a sense of accomplishment. This is quite a contrast from the 50 per cent Ben received in physed on his last report card. I couldn't understand why he scored "good" in most of the related items (e.g. work habits) but did so poorly if the program is adapted to his disabilities...

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'Our hopes and dreams'

Holly Roos is an American mom to Parker and Allison, who have Fragile X. A group of bloggers in the Fragile X community are nominating her for a CNN hero award, and I have to say I was moved by this video of her: We have hopes and dreams for our children. You can read more about her here, and see how she is giving voice to the hopes and needs of families of children with Fragile X and developmental disabilities. Lou...

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'Just be kind'

Here's a pic of Ben (with brother Kenold) just after his first personal-training session at the club last night. As you remember, I wanted to sign Ben up at our club because his physiotherapy has ended and he really needs exercise. But, I was filled with angst about whether the club would be welcoming to a person with disabilities and whether Ben could even use the equipment because of his tiny stature. Things in general went great last...

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Remembering Zackie

Please stop by Heather Hamilton's blog to read this beautiful tribute to her son Zack. I'm so grateful I got a chance to meet Zack and Heather by chance at Holland Bloorview recent...

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Feel the fear, and do it anyway

When your child has disabilities, there are times when you feel vulnerable and exposed. February and March have been those kind of months for me. It started with Ben’s psychological assessment – something I’m confident strikes terror into most parents of children with learning problems. You hand your child over, not certain what the outcome may be, yet knowing how an IQ score can close doors, lower expectations and marginalize...

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Heavy hearts

I am very sad to let you know that Zack passed away last night. His mom Heather called him 'Zackie,' and his spirit shone through everything she wrote about her family. Read more at Please share your stories about Zack. Thank you for your support, Lou...

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Hold them in your thoughts

Last month this piece on marriage by Heather Hamilton resonated with so many of you. Heather's son Zack (left) is in the cardiac ICU at SickKids right now. Please hold him, his mom and his family in your prayers and thoughts. Lou...

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Life plans

I found this fabulous website called Connectability.ca. It's run by Community Living and has great information for children and adults with developmental disabilities. I particularly liked this presentation about Person-directed planning. In a month, we are doing a life-planning session for Ben with Community Living facilitators. We will be using a tool called Passport. If you go into the presentation above, click on 'launch,' then...

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When friendships fall apart

I met an amazing family here a number of years ago, after their son had a stroke. More recently, the mom of this family shared that the most painful aspect of her son's brain injury was his subsequent loss of friends. I'm very grateful that this parent has put pen to paper to share her experiences with us! Louise It's with great interest that I've been following the stories shared by parents who find themselves filled with...

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Welcome to the club

I'm delighted to share this guest blog from Marcy White (above right). Marcy recently joined our family leadership program at Holland Bloorview. This program sees parents advise on hospital policies and programs, mentor other families and share their health-care story and insights in education forums with staff and students. If you are a Holland Bloorview parent interested in this program, please let me know. Thank...

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Every Kindergarten Kid Matters

Check out Every Kindergarten Kid Matters, a video campaign to ensure that Ontario's move to full-day kindergarten includes the supports and services needed for children with special needs. The campaign is spearheaded by the Ontario Association of Children's Rehabilitation Centre...

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Separate is not equal

Last night we have a visit from a woman from Community Living. We were signing Ben up for an after-school respite program that runs once a week. Ben and two other students from his class will go to a nearby community centre that offers an after-school program of games, sports and arts for youth with developmental disabilities. I’m grateful for this program – and how Community Living has planned to have sign-language interpreters...

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