Thursday, November 20, 2014

Why is it so hard?
















By Louise Kinross

"Let me get this straight," my chiropractor said.

"You've had this pain in your neck and shoulders for 28 years, but you've only got $250 to fix it with?"

"Yes?" I said, with a plaintive expression on my face.

I sat on an examining table with my legs dangling in the air, like a child, and the doctor sat in front of me. I'd seen him for a series of sessions a year ago when my knees got really bad. Now my neck and shoulders, which I've had ongoing problems with, were burning. 

The night before I had to lay down on my back at 7 p.m. 

"It hurts too much to carry my head around," I explained to my husband, who was sitting in the other room. 

Shortly after that I called out: "I can't pick up my cell phone." 

"Why?" 

"It's too painful. I'm lying here with nothing to do. But it hurts too much to hold up the phone."

"Do you know how pathetic that sounds?" he said.

The chiropractor had taken a video of me to show that when I thought I was sitting with my shoulders down and even, they were completely wonky: one was way up and the other way down. When he felt my spine he said it wasn't "where it should be" and he wanted me to have an x-ray.

Why had I let things go so far? 

Just the week before when I saw my therapist I told her I was burnt out, even though I was taking a vacation day. "That's what you said the last time I saw you," she said. 

I was into the fifth week of a very exciting research project at work: nurses from across our three inpatient units were coming together for 90 minutes a week to write and draw about their emotional reactions to working in children's rehab. I was running the groups with two amazing researchers from the University of Toronto: one the illustrator in residence of the medical school, and the other heading up a new series of humanities courses at U of T, who was also  a Phd in English.

But it was something extra, on top of my regular work.

Sometimes I'd do a fantastic interview for BLOOM at work and I'd get so excited about it that I sat up late at night to finish it at home. I was also doing some personal writing at home, so after a long day of writing I'd come home with the intention of "writing" some more. 

"No wonder your shoulders are hurting, hunched over like that," my husband said as I sat at the dining room table tapping at a laptop in a distinctly unergonomic fashion.

In the morning there was the ritual of putting my son's brace on his leg and pulling him up to sit on the couch at a 90 degree angle. If I didn't take the time to lift properly, I wrenched my lower back. My husband had done this one too many times and refused to do it again, so we were no longer alternating.

"You can't keep adding more and more things to your plate," the therapist said. "You're already working full out at work and with the extra demands of your family. How about for the next three weeks you don't do any writing at night? Instead, you recover. You take a nap, or you read, or go out or do something that is completely relaxing. You take care of yourself and let yourself recover."

"Three weeks?" I said, already in a panic. "I don't think I can do it for three weeks. No, that won't happen. I'm 50 years old. Time is running out. Perhaps I can tell myself that I will pick certain days when I go home and I don't do anything at night. That sounds more realistic to me."

The therapist looked at me with a sad, knowing smile.

That night I got the stomach flu, and the next day I lay in bed, unable to go to work or do anything. It took me all weekend to recover.

A few days later I was sitting at the chiropractor's, telling him my sob story about my shoulders and neck. And it was sinking in that perhaps there wasn't a quick fix to running myself into the ground like this.

Two years ago I had a similar experience of being 'forced' into slowing down when I broke my arm badly

I know the research showing that parents of kids with disabilities have higher rates of physical and mental health problems. 

When my neck and shoulders seize up, I start to project pain into the future. If it hurts this much at 50, how much worse might it get? That freaks me out, because I have to be there to care for my son. I can't afford to be out of commission.

So here I am, 20 years after my son was born, recognizing that I still haven't learned this lesson properly. You know, the one where they say if you don't take care of yourself, you can't take care of anyone else?

And I need to.

Tuesday, November 18, 2014

'I do feel sad sometimes, but Kate isn't'


Last week I shared a new comment written on our most popular post The Invisible Mom by Sue Robins. The Invisible Mom is about how mothers of kids with disabilities can face the same social exclusion their kids face. Julie Drurie, mom to Kate, 7, who has a rare mitochondrial disease and took the selfie above, wrote a thoughtful response on her blog Searching For Solid Footing. We've reprinted it below. She made me think about how my perception of my child's exclusion may differ from my child's perception. Interested to hear your thoughts. Louise

'I do feel sad sometimes, but Kate isn't'
By Julie Drury

The first time I read The Invisible Mom I didn’t think that was me. I understood it and felt strong empathy for Aaron’s mom, but I didn’t think I felt the same pain and angst of exclusion as she.

But then I started considering how Kate is ‘included’ and ‘excluded,’ deliberately or not. I reflected on the moments where her differences stand out so starkly and where I hustle to make excuses for her…

…“she can’t hear you.”

“yes, she’s 7…but she’s more like a 3-4-5 year old.”

“she is signing or saying this that or the other thing.”

“well, she could come to the party…but maybe I should come too…to help…and she’ll probably have to leave early.”

She’s the kid who leaves early from school, is often sick, wears the funny helmet, has a tube in her nose, doesn’t speak, sometimes hits the other kids, is often in her wheelchair stroller because of fatigue, runs away and won’t come back, doesn’t understand when you ask what her favourite colour is (but she can tell you her name and how old she is!!). Some (few) make an effort to include Kate, but playdates, birthday-party invites and get-togethers with the girls are not really part of her life, sadly.

She loses her peer group annually as others grow and mature and learn and she is left behind. Her reality is that adults are her friendsand the few children whose parents facilitate them staying engaged with Kate.

Do I feel left out? Sometimes, yes.

Am I sad? Yes, I grieve ‘loss.’

More importantly, does Kate feel left out? No. Is she sad? Nope. She has her friends at school that will change year to year, but that she values nonetheless. She has her friends at Rogers House (Myah, Moon Pie, Buffa, Mat-teww), and her adult friends (Christine, Kat, Erin, Kara, Adrienne, Vanessa, Steffi, Tall Steve, and more) that she loves. She is developing her own friendships and through those connections, I am finding my peer group of moms and friends as well. A different peer group than what you would expect, but a very valuable one.

I don’t think I am an invisible mom. I think people see me. If they don’t, I usually make them see me and Kate.

I wish for so many things for her. I wish for playdates and friends and movies and outings and independence.

I do feel sad sometimes. But Kate isn’t. Not yet. For now she is happy. Like Aaron’s mom I hope she never has to understand or become aware of the pain of invisibility.


Sunday, November 16, 2014

'Who is teacher?'

I just read this exquisite piece by Kari Wagner-Peck, above with son Thorin, 8. Thorin attended Grade 1 at public school last year in Portland, Me. Kari is a fabulous writer who blogs at A typical son about raising her son with Down syndrome. Make sure to bookmark her blog. She always has a unique perspective. I can't wait for the next one in this series! Louise

By Kari Wagner-Peck

We started homeschooling or unschooling or what you might call practising loving and respectful learning in September.

This is the beginning of the next chapter in our lives. How we got to THAT is a whole other story I have not wanted to write about. Expect a post on that soon entitled something like: It Was Not Just One Reason.

When I explained to Thorin we were homeschooling he had two questions. The first was easy to answer:

“I call you Kari?”

“If that’s important to you, sure you can,” I said.

“Thanks you, Mom.”

The second question was difficult and painful and probably at the heart of learning at home:

“Who the teacher?” he asked.

“No one is the teacher,” I said.

“No! Who the teacher?”

“We could both be the teacher?”

“No!”

“We are both the student?” I offered.

“No! Who the teacher!” he screamed.

“You need to learn reading, writing and math. I have to figure out how to help you by learning how to help you. Confusing, right?”

Silence.

“Thorin, I am not sure what I am doing, yet.”

“No!!!!!!!!”

“I am your mom. I am learning, too. I don’t want to be a teacher. I want us to be a team.”

Silence.

“Can we be a team? See if that is okay?”

Long silence.

“Can we try?” I asked.

“Okay, Kari.”

THEY say start with what your child loves. So, Thorin and I are writing a book together. My co-author and illustrator (see below) does not want to share anything but the central characters in our story although we have a title, character names and a plot. As a team member I have to honour his request.

Thorin’s word use has quadrupled, reading and math levels have increased more in two months than the entire first grade. Most importantly he is happy again.

I have learned that the greatest teacher is: belief.

Expect more on all of IT.


Illustrations by Thorin.



Wednesday, November 12, 2014

Left out

I want to share a comment written last week on our most popular post.

The Invisible Mom, written by Sue Robins, has had almost 22,000 views and generated 80 comments.

It's about how mothers of kids with disabilities can face the same social exclusion their kids face: "In the foyer of every elementary school there's a gaggle of moms standing in a tight circle, waiting to pick up their kids," Sue writes. "In the 10 years I've parented my son Aaron, I’ve never cracked that circle. I've walked past that circle hundreds of times and nobody has ever shifted—ever so slightlyto give me room to join in."

And not only do these 'typical' parents ostracize parents like Sue, she writes, but they seem to sanction 'leaving the kid with disability out' when it comes to their child's birthdays and other get-togethers.

Sue wrote her piece over a year ago, yet listen to how it hit this parent.

Do parents of kids without disabilities have any inkling that this is reality for many of our kids? If they did, would they care? Louise 


Thanks for writing this. It has been in my heart for years. Yes, I know too well the gaggle of moms and dads. Like a gauntlet to run every day.

Every year I have hosted a birthday party for my child, every year something fantastic: a bouncy castle, paid entertainment, tons of loot. Every year the kids came, sometimes even ones not invited. But the reciprocal invitations never arrived. This year, he turned 12, and only one child showed up, despite the party being held somewhere all kids love. And this one kid probably came because I pay him to do yard work. I guess at 12 they are all too cool to go to the "retarded" kid's party. My sweet loving boy spent his birthday in tears. How do you explain it to a child? I don't know
.

Tell us your story

What do you want people to know about being a special-needs parent? 

What do you wish people understood about parenting a child with a disability or chronic health condition? 

Tell us in the comments! Louise

Tuesday, November 11, 2014

Community Living looks beyond adult 'group homes'

By Louise Kinross

Several years ago Chris Beesley wrote a BLOOM piece about how raising his son Mitchell, who has Fragile X and autism, had changed his life and career aspirations.

I met Chris last week in his new role as CEO of Community Living Ontario. I wanted to talk about options for housing for adults with intellectual disabilities.

Next week 100 of Community Living’s executive directors are coming to Toronto to brainstorm ideas that move beyond the traditional group home. The group will hear updates from an Ontario Developmental Services Capacity-Building Task Force on Housing, the federal program My House, My Choice, and a partnership between the Ontario Ministry of Community and Social Services and MaRS research hub, which issued a challenge brief to develop creative housing solutions for people with developmental disabilities.

Earlier this year an interim report from the Select Committee on Developmental Services noted there were 12,000 Ontario adults on a list for group homes with a wait of 20 years. TWENTY years.

So with my son now 20—as is Chris’s son—I wanted to hear about possibilities for change.

BLOOM: What is Community Living Ontario?

Chris Beesley: We support individuals and families in creating full citizenship for people with developmental disabilities. That means living where and with whom they want to live, inclusive education, work—either paid or volunteer—and recreational and social connections. Everyone needs to have friends.

BLOOM: Can you update us on new provincial funding for developmental services as a whole?

Chris Beesley: In the provincial budget $810 million dollars over the next three years was put into developmental services. The Ministry of Community and Social Services currently has a budget of about $1.7 billion. When this is rolled out in its entirety, it will bring the ministry's budget to a little over $2 billion per year. The net result is that there will be an extra $372 million annually in the system.

BLOOM: It sounds like a lot of money, but given the needs, it isn’t.

Chris Beesley: The money will be used to eliminate the wait list for Special Services at Home and Passport funding, and to cover new people coming into the system. They’ve also committed to 1,400 residential spaces.

BLOOM: But if 12,000 people are on a wait list, 1,400 spaces is just scratching the surface. What kind of residential spaces?

Chris Beesley: Some will be group homes, some will be individuals living with a family, like a foster situation, and some will be supported independent living. Our goal is to see government support individuals in their residence of choice in a flexible way. Eventually, we’d like to see residential dollars flow through Passport funding. Passport is individualized funding, but it’s currently capped at $25,000 and can only be used in the community, not for overnight support. Right now there are individuals who receive hundreds of thousands of dollars for residential support a year, but it flows through agencies. We’d like the option, where appropriate, to unbundle that from the agency and give it to the individual, so the individual is in control of where they live and who supports them.

BLOOM: What’s an example of out-of-the-box thinking?

Chris Beesley: Twenty five years ago 10 families came together to create an intentional community in Pickering. They accessed federal and provincial funding to construct a housing co-op with 115 units, seven of which would be occupied by their sons and daughters. They pooled the support funding their children received. 

BLOOM: How has it worked out?

Chris Beesley: It’s worked very well. But the parents have had to do a lot of the heavy lifting. Those parents are now in their 70s and wondering how they’re going to keep this up. We’d like to see better coordination and planning across government ministries, municipalities and agencies, so parents aren’t the ones trying to make all the connections.

BLOOM: What are you discussing at your housing conference?

Chris Beesley: We want to hear from our executive directors about what they’ve done, or seen, in their communities, that’s promising. What’s working, what isn’t, what are the barriers and the opportunities? We want to get a lay of the land so we can look at moving beyond group homes. We want to identify practices and models that the government may want to invest in.

BLOOM: Is there anything new you can share with us?

Chris Beesley: I just learned about how Community Living London has been successful in finding investors who want to buy houses, so that the agency’s money doesn’t get locked up in the bricks and mortar. They have 30 homes and 21 of them are owned by investors.

BLOOM: Do these investors have a connection to disability?

Chris Beesley: No, not necessarily. They’re people who want to buy a house as an investment and they want a reliable tenant who won’t skip out, and we’re able to provide reliable tenants. Community Living London has become known as a facilitator for matching great tenants and investors.

BLOOM: How can parents learn about what comes out of your conference?

Chris Beesley: Once we’ve had the event we’ll write a report that we’ll post on our website There's good stuff going on, but our challenge is to create the space for this conversation and to bring all of the parties together.

BLOOM: What ideas are you thinking about in terms of Mitchell moving out?

Chris Beesley: We’ve thought about selling our house and buying two townhouses, so we're close: one for Mitchell and one for my wife Lori and I. Maybe we'll move near a college or university so we can find a student who can live with Mitchell for cheap rent, and in return would agree to be there every night and morning.  Of course we'll need be part of the support, but this is a model that works for others so it's definitely something we'll explore.

Thursday, November 6, 2014

Wanted: Your ideas on how to make services better

Ontario youth with disabilities and chronic health needs have a unique opportunity to tell government what they need to live a full, satisfying life and how children’s services can change to better support them. The I Have Something To Say project by the Provincial Advocate for Children and Youth seeks submissions from children, teens and young adults who’ve used pediatric services. The deadline to contribute is International Day of Persons with Disabilities on Dec. 3. BLOOM interviewed Janis Purdy, child and youth advocate, to learn more.

BLOOM: What’s a simple way of describing the Provincial Advocate?

Janis Purdy: We elevate the voices of children and youth to ensure that their wishes and perspectives are considered when decisions are made about their lives. Our mandated areas are youth justice; children’s mental health; child welfare; children and youth with special needs; and First Nations children. Youth with special needs are in our mandate because they receive services in hospitals or through service providers or the Ministry of Children and Youth Services.

BLOOM: What is the I Have Something To Say project?

Janis Purdy: It’s a project designed to enable children and youth with special needs to participate in and lead changes to programs, services and legislation. It gives youth access to decision-makers and enables them to influence policy and social change.

BLOOM: Who would you like to hear from?

Janis Purdy: They might be children with cognitive or developmental disabilities or any kind of physical or complex health concerns. They might live in a facility or be in the care of their family. We are looking for children and young adults of any age who have had experience with the child and youth system.


On our I Have Something To Say youth advisory, we have youth with really diverse backgrounds. Some have medical issues, some are living with autism, some have physical or developmental disabilities, some are siblings or family members. They are under and over 18. Some participate with the support of caregivers and some come on their own. They seem to be connected to each other in a really special way and want to make change in Ontario.

BLOOM: What issues do you want to hear about?

Janis Purdy: We want youth, with their lived experience, to tell us what they think needs to change. What services are good, what aren’t good and where are the hot spots?

So far, we’ve had youth express concerns about moving from children’s to adult services and the lack of services after age 18; about not getting supports they need to live with family, so they have to move into a more institutional setting; and about the education system. One student with autism wants to be in a regular classroom with accommodations, and doesn’t want to be bullied and isolated.

Many youth feel invisible and they want people to know more about their lives. Some want the opportunity to find their voice. They say 'Our whole lives we’ve had doctors, nurses and therapists telling us what we should do and must think, and sometimes it feels like I don’t even know if I have a voice.' One boy wants people to know what it’s like to live with his painful disease and how his parents have to fight every month to get the money he needs for bandages.

BLOOM: How can children and families participate?

Janis Purdy: There are several ways. We have a youth advisory committee that runs every month on a Saturday and works on projects in between. For kids who can’t reach us, we have a narrative project where we’ll come to your house to do an interview. The plan is to eventually compile these narratives into a book because it’s really the stories of children’s lives that are most interesting. Provincial Advocate Irwin Elman will make recommendations to government ministers and decision-makers in Ontario, and every recommendation will come from the kids. The book will be presented to decision-makers as a resource guide to learn more about these families and how change is possible.


On our website we’re gathering submissions from youth. They can be in any format: a video, a piece of art, an audio recording, something written by the child, or by their parents, or words transcribed for the youth. We are making an effort to listen in every way possible. Also, Irwin is available to come out to speak to groups and youth can contact him directly at irwin.elman@provincialadvocate.on.ca.

BLOOM: What if a child can't communicate in conventional ways?

Janis Purdy: Contact us and we’ll find a way that suits each child and family best. Tell us how we need to listen, or who we need to listen to, and we’ll do it. I’ve already done interviews with families whose children can’t speak. We have a sibling on our youth advisory who feels like she’s participating on behalf of herself and her brother, who died last year. She says: ‘I’m here for the two of us.’

BLOOM: When would we expect to see outcomes from this project?


Janis Purdy: There’s no ‘end’ to the project because we’ll keep doing this as long as youth in Ontario say there’s a need for change. Sometime later in 2015 Irwin will take everything he’s learned in different forms in a public way to decision makers.

To make a submission, go to the
I Have Something To Say website or e-mail nikie.tentoglou@provincialadvocate.on.ca. To share your story in our narrative
project or to join our youth advisory call Janis Purdy at 416-325-5669 or e-mail janis.purdy@provincialadvocate.on.ca. Everett, pictured with his mother Rhonda above, and Joshua, below, are both youth advisors.