Tuesday, December 1, 2015

For Kate

Julie Drury has written a number of times for BLOOM about raising her daughter Kate, who had a rare mitochondrial disorder. Most recently, Kate had a bone marrow transplant. Kate passed away last night. She loved pink. Please hold her and Julie and their family in your thoughts.

Monday, November 30, 2015

BLOOM media round-up

By Louise Kinross

Last week we posted Ho, ho, humbug about how toy shopping can be a difficult time for parents whose children have disabilities.

Every year Ellen at Love That Max creates a list of regular toys that may work well with children with special needs, based on recommendations from therapists and parents. She just posted her 2015 list.

We had a comment on our post about how expensive specialty toys can be, particularly for a single mom. If you have any ideas on how to find great deals, or perhaps gently used toys, please comment below.

We also heard from Holland Bloorview family leader Susan Cosgrove about how she changed her gift-giving routine to make it manageable for her son with autism. 

Although it's in a different way, the holidays are a challenge around here too. I think it's hardest on Liam who is 12 and autistic. He gets so wound up about his Christmas list and wondering if I will be able to find the things he's asked for. He's not being greedy... But surprises and unpredictability stress him out.

Last year I let him choose and purchase his own gifts. One month before Christmas I give him a $100 budget. We purchase his gifts together (sometimes online). This year he chose Toys R Us on a Saturday. 

I wrap his gifts and put them away. He knows what he's going to get and plans what order he will open his gifts Christmas morning. For my own sake I wrap up a few surprise gifts, but we don't talk about those beforehand. 

It's amazing. It reduces his anxiety by 90 per cent, easily. He knows what's coming and plans his Christmas morning. I think it's a great system and could work for most kids who have anxiety. It's a small thing but it's been life-changing for us. 

Let us know if you have other ideas for making the holidays merrier. Here are some links you may find interesting.

Ontario's sheltered workshops to close forever, The Toronto Star

How one Paris start-up is becoming an Uber for people with disabilities Mashable

Don't get angry, and don't get even Paul Levy, former CEO of Beth Israel Deaconess Medical Centre in Boston, on why anger in negotiations doesn't work on the world stage or among senior clinicians in hospitals.

Study says disabled face clear job bias Boston Globe

How high-paid bosses blew it The Toronto Star
"...While the Community Care Access Centre bosses were getting massive pay raises, many of the therapists, personal support workers and nurses who actually provide care to patients were earning less than $25,000 a year and hadn't seen a pay raise in years."

Special needs traumatic stress disorder Seizing Hope
This parent notes that there is no P (post). "We get up and live these scary moments every day."

Wheelchair users 36 per cent more likely to be killed in traffic than pedestrians The Atlantic CityLa

Thursday, November 26, 2015

Ho ho, humbug? Toy shopping is hard for special-needs parents

By Julie Brocklehurst

There's a natural desire to pass family traditions down to the next generation, and I always thought I would… until my son, Brennen, came along, rocked my world, and changed how we do things, including the Christmas holidays, entirely.

For the first couple of years of Brennen’s life, I would dread going to toy stores. Who am I kidding? I still do. I avoid them at all costs, knowing that there is very little available that Brennen can “play” with.

Christmas shopping has become a challenge, and though I try to resist it, every year I inevitably find myself in a toy aisle, tears streaming down my face with the realization, once again, that I am living in a starkly different world. While I dream of wrapping up the one thing my child will adore, the one thing that will attract his attention, ignite his creativity and give him opportunities to play and learn and grow, it is unfortunately not that easy. 

Finding products and toys that will work for Brennen is difficult. I look at items, analyze their potential, and ultimately decide that they are not suitable—that he can’t physically manipulate them on his own, and will be a complete waste of money. Sometimes I will purchase the toy anyway, in hopes that some miracle will happen and his skills will improve. 

Sometimes I just want to feel like any other parent shopping at Toys R Us, who can pick out a present for their child without having to stress about whether or not it will be used for its intended purpose, or be added to the pile of stuff that goes into a closet and never comes out.

Christmas is different with a child with special needs. Brennen can’t write a letter to Santa. He can’t tell me anything that he would like to ask for, or what he hopes to find underneath the tree on Christmas morning. He can’t get up in the middle of the night to exclaim his excitement that Santa has come, and he can’t unwrap his own gifts. 

I don’t even know how much he understands about Christmas or Santa Claus or traditions or magic, but we do it anyway. We bring Christmas into our home and we celebrate with all of the things that a little boy should have around him—love and light and wonder and joy. We do it for him, and we do it for us, as a family. 

It is important for Andrew and I to carry on with some of the things that meant a lot to us growing up. We love Christmas! I still get giddy thinking about my favourite Christmas songs (so many I can’t pick just one!), favourite Christmas movie (It’s a Wonderful Life), and favourite Christmas treats (my Mom’s (used to be Nan’s) apricot raisin cake).

My most cherished Christmas memories from when I was a child are never related to a present. They are memories of going to mass on Christmas Eve with my father and grandfather, Dad reading The Night Before Christmas to my sister and I no matter how late it was (every year until we moved out), having turkey dinner on Christmas Day with my Mom’s family, and a sing-along at my parents’ annual blow-out Boxing Day party (that is still a tradition today!). My favourite memories revolve around people, family, spending time with loved ones and celebrating the holidays together. This is what matters most to me, and this is something that I can continue with my own little family. 

Brennen enjoys the sights and sounds of Christmas. He loves to look at the twinkly lights on the tree, and we have Christmas music playing constantly. He is happy when he is surrounded by people, and he certainly knows that he is loved.

We have also started some new traditions. On Christmas Eve, instead of going out, our family and friends now come to our house to see Brennen before he gets tucked into bed for the night. Our schedule of events now includes the Janeway Children’s Hospital Christmas party, Easter Seals Breakfast with Santa, and the Rainbow Riders Live Nativity. These have quickly become our favourite and most anticipated events of the season!

We don’t go overboard with gifts. On Christmas morning, we take time to help Brennen unwrap each one, enjoying the sound of ripping paper, and the anticipation of what’s coming next! We focus on the importance of what the holidays are truly about—family and togetherness, kindness and giving, magic and wonder. 
If I were to give advice to parents of children with special needs this Christmas, I would have to say not to put too much pressure on yourself, and don’t expect things to be ‘perfect.’ 

The holidays are stressful for all parents, but our children’s special needs add an extra degree of difficulty. Try not to get caught up in the details, and just enjoy the time with your family. It may not look the way you had envisioned it, and it may not run as smoothly as you had hoped, but it can still be special. Focus on the positive things, and think of all the things you are thankful for. Find happiness in your child! 

Bruce Templeton, who has visited with 1,500 children dressed up as St. Nick, writes in The Man in the Red Suit: "It's your presence with your family that matters a whole lot more than anything that's under the tree. It's your presence, not presents that counts."

Julie Brocklehurst is a writer, an advocate and a mother to a little boy with cerebral palsy. She created her blog Tiptoeing Through as a place to share some of her thoughts and feelings about life, love and the unexpected journey that is raising a child with special needs. Every month in her Tulip Tales series, Julie features a child with special needs from Newfoundland and Labrador and shares their amazing story. Julie is a director on the board of the Cerebral Palsy Association of Newfoundland and she runs a child care program for children with disabilities.

Wednesday, November 25, 2015

A letter to my Bubbie

Laura Rosen Cohen has a teenaged son with a rare genetic disorder. This is a letter she wrote to her late grandmother, who was and remains a formative and towering figure in her life and who sadly passed away too soon.

By Laura Rosen Cohen

Hi Bubbie,

I started this letter to you a hundred times or more in my head, and each time, I started crying, so I had to stop, and try to focus on the positive until my breathing became more rhythmic, my limbs a little more heavy and relaxed, giving me a chance let my body and mind rest, and sleep away my worry for a blissful few hours while I have help at night.

When morning comes, and the sun returns to its rightful place on the new day’s horizon, my fears start creeping in again. I wake up, generally thankful and truly grateful for the new day and its blessings. But I confess, I look into the mirror and see a middle-aged woman looking back at me. That woman no longer has a special needs child, she has a special needs teenager, who will soon be her developmentally disabled adult child, a dependent adult different from other adult childrenalways. 

We had our first “transition” meeting, and I guess that has been sort of a trigger. The road from disabled child, to teen to adult is a bumpy one and I have to admit how scared I am to travel upon it. I’m driving into unchartered territory, toward the time in my life, to a destination called No Empty Nest, and will stay there for as long as my husband and I are well and able. I wish you could have met him, and my kids.

Even though I know you’re with me all the time, watching over me, I wish I had you here to talk to, really talk to. I wish I could hear your voice, really hear it out loud, and not just in my head saying “Laura, you are going to be OK, you can do this.” I wish you would make me a cup of sweet, milky tea in those white tea cups with the pretty purple flowers on them, and your banana bread, and we could sit in your kitchen, and let me feel your soft hands, and you would be humming old songs, and giving me more bits of wisdom that would carry me through my fears now as they did even then.

I guess what I’m saying, Bubbie, is that I’m scared. I’m scared of finding adult services and programs and doctors. I’m worried about how independent he will be even though I know worrying will not win any more independence than what he is actually destined to achieve. 

I’m concerned about making it as easy as possible for my other children to lead full and rich lives, with as much support as my husband and I can possibly generate to give them as much freedom and peace of mind as possible for when they start to navigate my son’s life on his behalf when we are no longer able.  

I’m worried about him having a meaningful life. And I’m sometimes tired, sometimes I grow weary from the constant need to project strength, to lead by example, to express a general sense of optimism and gratitude for what I have to others even when my reserves become low themselves or in the moments when I find myself momentarily and regretfully bitter, or even sadlyresentful. Yes it happens. These moments are fleeting, but they do happen. 

I wish I could sit back in your den and talk it out with you. If I close my eyes I can feel the fabric, and see the sun shining through the windows and hear a few notes on the organ, and hear you singing.

I know you know exactly what scares me before I go to sleep so I’ll be talking it out with you frequently, even if only in the peaceful no man’s land between consciousness and dreaming, when the line between your voice and mine converge into a dreamscape, as I try to retain and remember your sage advice and our conversations as dawn breaks and a new day begins.

Tuesday, November 24, 2015

Why home nursing is not respite for one mom

By Marcy White

It looks good on paper.

After a year in hospital with machines helping him breathe and tubes sucking out mucous that clogs his airway, my 13-year-old son Jacob, who has a rare neurodegenerative disorder and is prone to respiratory infections, was discharged last summer with 24-hour nursing care in our Toronto home.

But aside from the fact that nurses can cancel at a moment’s notice—leaving parents like me to pull all-nighters so my son doesn’t choke to death—we’re facing alarming incompetence when they do show up.

Jacob has had registered nurses care for him every night since he was discharged as a three-month old baby. In those days, our challenges were nurses who fell asleep, a nurse whose eyesight was so poor she had her driver’s license revoked, and the one who was arrested for shoplifting at Winner’s when she hid items behind my son’s back on a walk.

Talk to a family whose child relies on home nurses and most have a story or two about workers who fall asleep during night shifts (I’ve never heard of anyone being disciplined because of it). 

But in the last few months, the mistakes nurses have made while caring for my son at home have alarmed me beyond measure.

One fell asleep at 3 o’clock on a Saturday afternoon. When I woke her up, she apologized, saying: “I’m sorry, I took too much codeine.”

Another nurse placed food from her fingers in Jacob's mouth, despite the fact that Jacob has always been fed through a stomach tube because of life-threatening breathing problems. At the time, he also had a collapsed lung and required frequent suctioning and oxygen. “Everyone should be able to taste food,” she explained.

There’s been a nurse who couldn’t speak English, one who repeatedly poked him in the eye and accidentally wrote on his face with pen, and one who’d never suctioned a patient before.

Another nurse thought 140 mg of medication was equal to 1.4 ml of liquid. She didn’t realize that one measurement was for solids and one for liquids. She thought they were interchangeable.

A day ago Jacob fell out of bed onto a hard tile floor because the nurse had him too close to the edge and the railing was down. Aside from a lot of crying, I’m not sure how he didn’t break something. When I reported this to the director of the nurse’s agency, she responded: “Thanks for letting us know. We will log it in our risk file.”

The nurses I'm writing about still work with the agency that’s the largest provider of pediatric nurses in Toronto. Prior to welcoming them into my home and introducing them to my son, I was assured that they had the qualifications and experience necessary to safely care for Jacob.

We have met a handful of wonderful, caring and skilled nurses. But although we’re funded to receive round-the-clock nursing, we can’t get consistent, competent care. Everyone involved knows this, but excuses are constantly made.

Until something as serious as death can be attributed to the malpractice of a home nurse, I’m afraid the system will continue to ignore the danger faced by the most vulnerable patients like my son.

Because of Jacob’s medical fragility, he is always at risk of choking. His breathing problems are constant and we rely on the skills of proficient nurses to clear his airway and administer oxygen and other medications when he turns blue. There is little room for error or hesitation when his oxygen levels plummet to dangerously low levels.

It’s safe to say that I’m barely hanging on at this point. I actually parked my car on Avenue Road the other day and as I was going into the bagel store I realized that not only did I leave the keys in the car, I left the car in park, running! A few days ago I went to pick my daughter up at gymnastics at night and ended up at her school by mistake. I am exhausted. I even have dreams about being tired. Perhaps it will be me who is hospitalized next.

Despite families like ours receiving funding to cover round-the-clock nursing, there’s no respite when you’ve witnessed many serious errors in your child’s care and a nurse “no-show” (with no backup) is just a call away.

Marcy White is the author of The Boy Who Can: The Jacob Trossman Story. You can follow her on her blog at Cure PMD. Marcy is a family leader at Holland Bloorview.

Monday, November 23, 2015

How does disability enter into care decisions about preemies?

By Louise Kinross

Last week I read this post called One Size Does Not Fit All about “shared decision-making” between parents and medical staff in a neonatal intensive care unit. It’s written by a Winnipeg neonatologist. Kate Robson, who is the parent coordinator in the NICU at Sunnybrook, posted a link to the piece on Facebook.

In looking at challenges to agreeing on whether intervention should be offered to a small preemie, the doctor gives an example of a woman who is in advanced labour at the hospital at 24 weeks. At 24 weeks parents are given the option of resuscitation or no resuscitation. 

The doctor notes that he has about 15 to 30 minutes to share information and a pamphlet.
“…we do our best but don’t for a minute think that shared-decision making has occurred.
” he says. I don’t believe this is possible unless the family has prior experience with a preterm birth or perhaps is a health-care provider working with newborns or children with disabilities themselves.”

I posted a comment saying that he makes a good point that parents with no intimate experience with disability will have a hard time predicting what the experience will be like if their child is diagnosed with disabilities. But so will health providers who've had little exposure, over time, to families raising kids with disabilities. 

“In the same way that a parent who’s had no firsthand/intimate/long-term experience with disability can’t accurately predict what that experience will be like, neither can a health provider who lacks that kind of exposure,” I wrote.

Annie Janvier, a neonatologist at the CHU Saint-Justine Children’s Hospital in Montreal, responded to my comment on Kate Robson’s Facebook page).

“…and providers only see children and families when they are not at their best (sick, in hospital, ER...),” Annie writes. “They do not see them during their family life, at school or birthday parties. In the literature, you will find we, physicians, are very pessimistic when it comes to disability. 

“When I hear another physician/nurse/provider tell me ‘parents have no clue what disability is’ I often tell them ‘I don't think you do either.’ We have to teach families about adaptation, resilience, coping. While other areas of medicine (cancer, amputees, spinal cord accidents, colostomies) have examined that, we haven't. Parents want to know about happiness, functionality, family life, friends and relationships, love, regrets, etc., not a list of diagnoses.”


Katharina Staub, outgoing executive director of the Canadian Premature Babies Foundation, posted this comment.

“Having given birth to preterm twins at 27 weeks of gestation has been a life-changing experience for me. I remember the prenatal consultation very well, even seven years later. It was full of statistics, negative outcomes and I was alone late in the evening. I was 25 weeks—the consult left me bewildered, fearful and stressed. It was actually not a discussion, I was given information.
“‘Partnering With Parents, One Size Does Not Fit All.’ I do agree with this title. Each family is different, comes from a different place, has different values and expectations when they end up in a delivery room unexpectedly at 23 or 24 weeks gestation. 

“I think what needs to be looked at is what shared decision-making means. What does it mean to provide ‘pertinent information’ to families? Is it giving a lot of statistics? How do health-care professionals decide what information is to ‘be delivered’ ? 

“I believe that in a shared-decision model, there is a discussion about this babythe family’s hopes and dreams. This does not have to be a two-hour discussion, but knowing about the family, their hopes and dreams, will help in guiding the ensuing discussion. Do we need to discuss all potential outcomes at this time? I don’t think so.

“A number of parents and I have written an article on this topic in June, 2014 in Acta Paediatrica: Our child is not just a gestational age: A first-hand account of what parents want and need to know before premature birth. The recommendations we make to health-care providers are as true today as they were then.”

Wednesday, November 18, 2015

I wish I'd seen the beauty of sign language years ago

By Louise Kinross

Last night was fun. I got to tell a story in American Sign Language (ASL) about a funny incident that happened when I was a teen. I was doing a test for a sign language course and we had to to tell a story about growing up. 

Mine involved my 16-year old self, my best friend, a bottle of rum that our old babysitter bought for us, and an encounter with the police late at night as we lay on the grass looking up at the stars.

In preparing for it I got to look up many signs on Handspeak, which is a wonderful site where you can watch video clips of different signs.

I also typed out my story, but in the word order that is used in American Sign Language (ASL), which differs from English.

When my son was young, I tied myself up in knots over whether to use signs in English or ASL word order.

"ASL is a language completely separate and distinct from English," according to this description from the National Institutes on Deafness and other Communication Disorders. "It contains all the fundamental features of languageit has its own rules for pronunciation, word order and complex grammar."

Instead of recognizing the beauty of ASL as a rich language that stands on its own, I was always translating signs into English and then fretting that it wasn't "proper English." How would this affect my son?

So, for example, to ask someone's name in sign language, you use signs that translate as "You name what?"

We ended up using ASL signs, but in English word order because we were also speaking at the same time we were signing.

This meant we were never fully immersed in ASL and deaf culture. 

We were, as they say, sitting on the fence.

I think this happens to a lot of families when their kids with disabilities are young. They are bombarded with different therapies, techniques and approaches and advice from professionals and other parents and just about anyone on the street who will chime in to give their opinion.

What if I make the wrong decision? What's the right decision? 

Meanwhile, all those years ago, in terms of communication, I was conflicted about whether we should use sign at all. It isn't generally recommended by therapists who prescribe augmentative communication (voice devices, picture boards etc). "No one in the community will be able to understand him," I was told.

And it wasn't something that my son naturally took to because of his weak fine motor skills. On the other hand, most of the "words" my one-year-old daughter had were signs she'd learned from us signing to our son.

When we were out and about I felt self-conscious about signing. I wanted to blend in like the rest of the young families in our neighbourhood. I still "cared" about what other people thought of me (ha ha, how times have changed).

We tried to do everything: sign, pictures, a voice device, years of speech therapy. 

There are so many value judgments about all of these things, and even value judgments about approaches within each area. 

Of course speech is the most highly prized, which can push parents like myself to pursue it for years and years, even though the child is not showing any functional gains (or maybe that was just me, maybe I just didn't see the light).

My son has chosen sign language as being the mode of communication he's most comfortable with, and that is most efficient. He's still limited in what he can express because of his fine motor issues, which means we can't get a really rich understanding of his thoughts. But it is his language. 

A few months ago a person who's helping us with life planning suggested that we needed to get on board with sign language in a bigger way. I think she was surprised at just how little signing my husband and I did (and our other kids, despite going to sign language camp for years, do none. It had stopped being "cool").

So my husband and I took a course and a couple of our workers did too (when our son was very young, we'd gone to an immersion program and also had weekly lessons from a tutor).

I adored my sign language teacher this time around. 

She told the most amazing stories that always had us in stitches. Part of it was how visual and dramatic sign language is. It's so much more than hand signs, it's facial expressions and body movements and sounds. It's often like theatre.

I began to see how full and fun this language was.

The other day we went by our favourite party shop and my son was very upset to see a sign that said the store was moving.

He was looking in the window when one of the staff came out. She recognized him as he loves costume gloves and has bought many pairs there. They were selling everything at half price before their move, and she said she'd found a box of gloves in the basement that she wanted him to have.

This was like Christmas for our son.

But what was so interesting to me was after we left, he signed: "New building where?"

He was asking me where the new store would be located.

What stunned me was his use of the sign for "building," which I hadn't seen for years.

In the last couple of months, since we've begun consistently signing with him, he's starting to string more signs together in a sentence, and to surprise us with signs. 

In the past, we've often expected him to express himself in silent sign while we, and everyone else around him, "talk, talk, talk." 

Now I realize that we weren't entering fully into communication with him. We weren't giving him the message that sign language was this rich, credible language that was worth using. We kind of expected him to use it as a default, while we never learned more than the basics (which spoke volumes), and kept on chattering.

I'm excited about where things may go from here.