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Julia knows firsthand that every family is unique

Meet Julia Hanigsberg, the new president and CEO of Holland Bloorview (in photo with daughter Rachel). Julia comes to us from Ryerson University, where she was vice-president of administration and finance. Here she tells us more about her own family's experience with disability and how she's learning about the hospital "from the ground up."

BLOOM: What does your experience as a parent of a child with disability add to your role here?

Julia Hanigsberg: I think it gives me a perspective on the complexity of the lives of our clients and families and a real appreciation of how every child—and every family circumstance—is unique. I think that’s even more the case in childhood disability than in other medical settings. Our client population has so many different vulnerabilities and exceptionalities and I have a real sense of that and of what families go through in trying to achieve the best opportunities for their kids.

BLOOM: Can you tell us a bit about your daughter?

Julia Hanigsberg: Rachel is 18 and we’ve been through a journey of diagnoses with her. She was born prematurely at 29 weeks and has global developmental delay. Then 15 years later there was a new diagnosis of autism. She also has some associated mental health issues like anxiety. I know that the diagnostic world for our kids is often longer and not so straightforward. There are layers, and things emerge over time as our children change. The world in which we operate is not a ‘one-size-fits-all’ world.

Rachel is in high school and she’s a very typical teenager who loves YouTube and her music—very loud music—and her privacy and space and wants to be independent. Her school is a great fit and she’s very enthusiastic about starting co-op because she’s excited about the world of work. She loves to shop, so she thinks working in stores will be lots of fun.

BLOOM: What’s been the greatest challenge parenting Rachel?

Julia Hanigsberg: Two things. One is navigating the system and knowing what to do when. Knowing that you’ve explored all the possibilities, you haven’t left any stones unturned. It’s a two-edged sword because when they’re little, and even now, you don’t always know what the possibilities are. The nice thing about having a teenager is that they have their own ideas about what they want to do.

The other challenge is moving into the adult system and that transition point is a very serious concern. Rachel’s 18 now so we are right in the heart of that—thinking of what the long-term future holds. School will end and that will be an enormous point of transition for her. As long as your kid is in school you know that they’re well taken care of for a good chunk of the day. The path for my daughter after school is less clear.

I’m conscious of the fact that my experience as a parent is just one parent’s experience. For example, our experience is very different from a parent who has a child with an acquired brain injury—where in a moment everything changes for their typically developing child. I gave birth at 29 weeks and we had a long time to move into the world we were in.

I’m also very well aware of the privileges I have. English is my first language and I don’t have a job where taking half a day off for my daughter’s medical appointment isn’t an option.

BLOOM: Can you tell us about your background?

Julia Hanigsberg: I’m a lawyer by background. I think that’s a fantastic educational background for being a problem solver. You come out with a structured way of thinking about problems. Very little of my career has been spent as a traditional lawyer. I spent 10 years in the provincial government, mostly with the Ministry of the Attorney General and in the Cabinet Office doing policy and legislation-focused work. I was chief of staff to a cabinet minister so I have a broad view of the workings of government from a civil service, policy and political perspective.

Then I went to Ryerson and spent five years as the general counsel and secretary of the board and five years as vice-president of administration and finance. It gave me time to understand how big organizations work and how you make difficult decisions within the context of large organizations. One thing I took from my time as a trustee of the board at Holland Bloorview and applied at Ryerson was related to client- and family-centred care. Family leaders here are involved whenever there’s a big procurement decision. At Ryerson, we never would have involved students in that kind of decision. So when Ryerson put out a request for proposal for a new food management company I suggested we have two students on the selection committee. It was fantastic.

BLOOM: Why do you believe that social media is important in your role?

Julia Hanigsberg: Two reasons. One is giving people an opportunity to get to know me as Julia and as the CEO of Holland Bloorview and demystifying the role. People who follow me on social media and talk to me in the halls will see there isn’t a big disconnect. As much as I’m trying to meet every person, it’s hard to do that, so I want to find other ways to expand how I connect with the team that works here and with clients and families. The other is to be part of the ecosystem of sharing of quality Holland Bloorview information that I can disseminate out to the world. My experience with social media is that you frequently make connections online that result in incredibly valuable personal and professional connections. There is a richness there that not everyone appreciates.

BLOOM: Research shows that parents of kids with disabilities are at greater risk of depression and anxiety and physical problems. What strategies have you used in your own life to take care of yourself?

Julia Hanigsberg: It’s a struggle that every parent has, period, and our parents have much more complex families. The other area we read about is resilience—in our children but also in ourselves. Building up capacity for resilience is like building up a muscle. I think that’s quite inspiring and something to be really thoughtful about.

A lot of what we do personally is the normal stuff—eating well and exercise—because you know you’re going to have to absorb and do more. We’re very lucky in that we have a lot of family around us. Respite is so important. We do a lot of that here at Holland Bloorview for our clients and families. In my family, we have nephews and nieces and grandparents who are really involved. So my husband and I can go away for a weekend, pretty infrequently, but we can do that. The support of family also means we can spend time with our other kids. I have 14-year-old twins. So it’s building resilience for the whole family.

BLOOM: How can the hospital best support parents so they feel able to advocate for their child?

Julia Hanigsberg: I’ve been really impressed with our Family Leadership Program. I think the hospital’s investment in the leadership of families is extraordinary and they can take that into the rest of their lives. When I joined the board of trustees the family advisory used to meet in the boardroom but now they meet in the conference centre because they can’t fit in the boardroom. We’ve trained over 100 family leaders. There are also more informal ways like our Parent Talk groups where parents can create networks that help them learn.

BLOOM: What would you like our parents to know about your plans for the hospital?

Julia Hanigsberg: It’s too early to talk about plans for the hospital. Right now I’m learning and listening and focusing on having experiences as the way I learn. People have been incredibly generous in sharing clients and families with me, encouraging me to participate in clinical team meetings and huddles, to help me better understand how the hospital works from the perspective of families and our extraordinary team of staff. My orientation is to learn the place from the ground up, not from sitting in this office.

BLOOM: What do you see as the hospital’s greatest challenge? Greatest strength?

Julia Hanigsberg: I don’t think it would surprise anyone to know we’re challenged financially, and, but for money, there’s more we would do. Space is an emerging challenge. We’re not there yet, but at a certain point we’ll want to do things and be limited by the lack of space. I think the hospital has made smart, economical and efficient use of its resources.

Everyone in the place has huge ambition and that’s an enormous strength. Everywhere I go, people want to do more and better and I think my role is to find the path that allows them to achieve their ambitions for Holland Bloorview. I don’t need to set out the ambitions. Talk to anyone who works here and they’re excited about what they do and have a huge vision for what that could be.

For a window into Julia's first weeks at the hospital follow her on her blog or on Twitter @Hanigsberg.

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.

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.

Sister story: Daniel makes me who I am

By Anna Penner

As the youngest child in our family, I grew up accepting my brother Daniel's differences as a given.

I don’t remember Daniel ever being able to walk or communicate. I don’t remember a time when he was progressing developmentally. I don’t even remember the time he almost died. For me, Daniel has just been Daniel, the way he is.

Our older brother Andrew does remember Daniel before he started to lose his skills. Andrew used to pray that Daniel would be healed. Then he’d run to Daniel’s side, only to find that nothing had changed. I don’t remember ever praying for healing.

In fact, I was so accustomed to disability as a young child that I walked into the home of some new family friends, looked around, and asked my mom “where’s the handicapped person in this family?” Disability has always been a part of my life and it has had a huge impact in forming who I am today.

Daniel has Batten disease, which is a neuro-degenerative disease. He functions like a six to nine month old. He can’t talk or walk or feed himself, and he wears diapers. We can tell if he is happy or upset but we can't discern what he wants or what would ease his discomfort.

When I was in second grade, our brother Andrew moved away and I assumed the role of the oldest child. Soon I was changing diapers and feeding Daniel through his g-tube. By high school I was taking my parents up on the offer to babysit Daniel to earn money, rather than go out with friends.

The year I entered college, Andrew and my parents became legal conservators for Daniel but I was left out of the process. The legal team suggested that the court would look unfavourably on an 18-year-old taking on this role.

Ten years later I became a legal conservator and the weight of my responsibility for Daniel was simply made official. I feel this responsibility in different ways.

For example, when I think about where I might move for my career, I think about how that will affect Daniel. When I start dating a new guy I wonder if he can ever fully understand the responsibility we will carry for the rest of Daniel’s life. I wonder if the guy carries the gene for Batten disease and if our children could have it. When we plan family vacations we'll have to think about the type of car we rent and where we're staying to make sure it can accommodate a wheelchair. It’s just part of life with Daniel.

The few times a year that I am in town, I go visit him in his group home. Most of those visits are not what I would call enjoyable. I feel obligated to go visit him, and guilty if I don’t. I feel guilty that I don’t visit more often, but after visiting I come away feeling like he probably doesn’t even care. When I walk into his home and call out his name he often turns away and ignores me as if to show his displeasure for my prolonged absence. And yet I continue to subject myself to the torture of simultaneously feeling guilty for "not doing more" and "not wanting to do more."

But even with all of these mixed emotions and uncertainty about how to be the best sister to Daniel, I wouldn’t change it.

Do I wish he could communicate with us? Absolutely! Do I wish he wasn't in pain? Of course! Can I imagine what my life would be without him? No way!

While my friends probably wouldn’t call me a patient person, I know I'm far more patient than I would be if Daniel had developed typically. I know I'm much more understanding and empathetic to those who are overlooked and misunderstood. All of these experiences led me to enter a graduate program in Sociology so that I could look at how children are affected by having a disabled sibling.

My early findings show that in the United States, girls who have a brother or sister with disability tend to get half a year less schooling than their female peers with typically developing siblings. For boys there doesn’t seem to be a difference. While these are raw statistics and do not fit any one individual perfectly, they reveal a disturbing trend.

Every time I see the disadvantage that girls with disabled siblings face, I realize how fortunate I am that I'm even in graduate school and that I have never felt like my parents expected me to care for Daniel more than our brother Andrew—just because I'm a girl.

My parents don't expect us to be responsible for him financially when they pass away. When I browse message boards for adult siblings I realize how truly fortunate I am in that respect. While there was a lot going on behind the scenes that I didn’t know about growing up, my parents did the best to give each of us the best family life possible.

My parents also pushed us to perform to the best of our abilities and not take anything for granted. While I sometimes felt the need to make up for Daniel’s deficits, that was never something I felt my parents expected of me. They wanted me to use the gifts that I had and realize that they were just that: gifts. I could just as easily not have had those gifts. They also helped me use those gifts to be a blessing to others. If my experiences, good and bad, can help other siblings out there, then it is all worth it.

With this in mind, I started looking at how siblings fare as they grow up. Although some sociologists have studied children with disabilities or their parents, we siblings have gone largely unnoticed. We recognize that a child with special needs requires additional therapies and that often takes up the family’s time and money. But how does that affect their siblings?

When I look back on my childhood, I can’t think of anything my parents could have done differently. They did not take my commitment to Daniel for granted. They did their best to make sure we were not held back by Daniel’s limitations but also made sure we were engaged in the community as a family. My parents would bring Daniel to my basketball games and I was expected to attend his field day at his special school. This was just what family did. Daniel supported us and we supported him. My parents didn’t make a big deal about it; that’s simply the way it was.

I keep a photo next to my work computer of my family from when I was three years old, right before Daniel almost died. I look at the children in that photo who have no idea what life has in store for them. Andrew and I don’t know what additional struggles we'll face because of our brother's disability. We don’t know how quickly we'll have to grow up compared to our peers.

Next to that old photo I have a recent picture of me with my brothers. In this one we are grown up. The photo captures our personalities. We are happy people. We aren’t jaded by the experiences we did or didn’t have growing up. We easily integrate the wheelchair into our pose. It is just who Daniel is, and that is what makes our family our family.

When people ask what it was like growing up with a special-needs brother I don’t always know what to tell them. It is the only life I have ever known. While I would not wish the pain of it on anyone, I also know that Daniel’s laugh is the sound of true, unbridled joy, and that all of our experiences together—good and bad, easy and hard—have made me who I am. I wouldn’t trade them for anything.

Anna Penner is in the second year of a PhD in Sociology at the University of California, Irvine.

Star-studded 'Serenade' benefits Beverley School families

By Julie M. Green

What does indie music have to do with children with special needs?

Toronto singer/songwriter Hayden Desser and his wife Christie Greyerbiehl worked tirelessly to marry the two for one extraordinary night last Saturday.

The result was Dream Serenade—a concert at Massey Hall to benefit children with developmental and physical disabilities at Beverley School in Toronto. The evening was spectacular, with performances from Feist, The National, Sarah Harmer and Billy Talent, to name a few.

Like many of us, disability wasn't on Hayden's radar until someone he loved—his daughter—was affected. And while much has been done to raise awareness of disorders like autism, there's a glaring lack of funding for therapies and family support.

Three years ago my son was diagnosed with autism at Holland Bloorview. Aside from a block of publicly-funded speech therapy, any support he's received has been paid for privately, by us. Friends and family are staggered when they learn that this is our reality. I know of too many couples forced to re-mortgage their homes or cash in life savings (assuming they're lucky enough to have savings) in order to afford programs for their children.

With my husband’s family overseas, and my own family living several hours' away, respite is virtually non-existent. And our son's needs are such that we can't get the neighbourhood babysitter to look after him while we take a much-needed break.

Demand for public services outstrips supply. Many children simply aren't getting the help they need, when they need it. Some are rejected for programs they should qualify for, while others sit on wait lists for years, missing out on early interventions so vital to their development.

When searching for childcare for his daughter, Hayden discovered firsthand how hard it was to find an appropriate program. Today, his daughter is a student at Beverley.

Hayden created the annual Dream Serenade to support this cause close to his family's heart.

Proceeds from the inaugural event will fund assistive technology and a custom green playground at Beverley School and also provide respite services to families.

When artists lend their voices to meaningful causes, the result is a thing of beauty. On Saturday night, the atmosphere at Massey Hall was electric.

But oddly, the highlight of the evening wasn't the Barenaked Ladies goofing around on stage. It wasn't the haunting tones of Matt and Aaron from The National, or the audience singing along to Feist's hit "1, 2, 3, 4." It wasn't even Hayden's moving tribute to his daughter in a new song.

No, the highlight was video footage of the lit-up faces of the Beverley kids during an impromptu jamming session with the performers the day before.

See you at next year’s Dream Serenade!

Julie M. Green runs a special-needs blog at Yummy Mummy Club. Check out the photo of her below with her son. Photo of the concert above by Farida Peters.

What do you think about 'slow code?'

Here Dr. Brian Goldman describes a "slow code" or "Hollywood code," when doctors are slow to respond to a "code blue" that signals a patient in cardiac arrest because they believe the intervention is futile.

"Slow code" is an example of the hospital slang Dr. Goldman, an emergency room doctor and CBC broadcaster, writes about in The Secret Language of Doctors.

I posted this on our Parent Voices at Holland Bloorview Facebook group yesterday and there was a discussion about the ethics of not being upfront with families that a full code won't be performed.

Doctors are obliged to do a full code unless the patient or next of kin say it's okay not to. Sometimes families insist on full intervention even when doctors recommend against it, which is what causes the dilemma for professionals.

I tweeted this question to Dr. Goldman:

:

@NightShiftMD -- how often is slow code called w kids w complex medical needs/and or developmental #disability? http:/

He replied:

‏@NightShiftMD

@LouiseKinross no data just anecdotal observations. It happens in that group of patients.

Check out the discussion on Parent Voices and leave a comment here.

Joy and grief: The dance

By D. Christine Brown

Three years ago today our son Lucas’s high fever and subsequent seizures sent us by ambulance to hospital where he suffered severe brain inflammation.

Thankfully he survived and is recovering nicely, albeit with brain injury that includes significant developmental delay and autism.

Every single day I juggle the intense feelings of joy I have with my son with immeasurable grief and resistance to the difficult reality of parenting him with his acquired disability. I feel left out of the real world of raising children when I see "typical" school kids everywhere.

This last week has been especially trying on my husband and me as parents. Lucas had a few minor "accidents" that required some first-aid attention which triggered Lucas's hospital memories of being poked and prodded.

Three years ago, Lucas was forced to endure endless IV changes and needles for bloodwork, screamed for hours on end with his steroid treatment, would get wound up in his IV from trying to spin out of the discomfort, shrieked in terror as the student eye doctor checked his eyes, and the list of horrors goes on...

So his new coping mechanism to deal with daily routines that involve touching him—such as changing diapers, bathing, brushing teeth or tending to "boo boos"—is to scream at the top of his lungs, kick non-stop and squirm. This means both of us have to physically hold him down while he shrieks in distress.

He transmits such terror in his prolonged screams that I fear the police will show up at our door. I worry that our neighbours must think we’re trying to beat him. Luckily, a script from his current favourite Thomas and Friends song has provided some relief. We tell him "Accidents happen now and again, sometimes just by chance!"

We both agree that Lucas’s resistance now is more about fear than pain, but it rips at my heart strings nonetheless.

This makes me reflect on our own resistance to Lucas's new life, post brain inflammation.

As parents, I believe we’re resisting the overwhelming responsibility of parenting Lucas after his brain injury—a degree of fear, uncertainty and change that most parents don’t face.

Since leaving Holland Bloorview as inpatients, each week brings new challenges, and we are worn down. We want a break from watching our child suffer needlessly, even if the suffering is sporadic. We want just the good and to leave the bad aside.

Instead of embracing the new and heightened responsibility, we feel burdened by it. We’re so relieved when finally things start to flow again, just to get slapped down by the next cold, fever, scrape, sliver, or trip to the dentist. Every normal life event brings such trauma into Lucas's life. We don’t know if it’s because it sparks memories of his hospitalization, or if it’s his autism or just his personality.

Lucas’s resistance to our helping him cope with daily activities makes me think about our own resistance to the reality of parenting a child with an acquired disability. And just as his resistance appears counterproductive to us, perhaps fighting our “new normal” makes things harder than they need to be. Reflecting on this three-year-anniversary, it strikes me that life has ups and downs. Ours are just more extreme, in both directions!

I believe my own current favourite Thomas and Friends song says it best: Every Cloud has a Silver Lining

Life is full of surprises, full of ups and downs

And so to have a silver lining, first there must be cloud

Every cloud is silver-lined, even when it rains

So don't get too downhearted, as things are bound to change

All you've gotta do is wear a smile and you will find

Your sun will shine

When you're feeling down it doesn't help to wear a frown

Never lose hope, you're sure to cope and you can carry on.

Just as Lucas resists what is uncomfortable, so we resist the discomforts of feeling responsible for Lucas's suffering.

We know we need to accept and take responsibility for our son’s behaviour while he’s at this developmental stage. But we can't allow ourselves to feel responsible for his or anyone else's feelings. We just have to keep doing what's right and show him the path of joy.

We have to be tolerant of life's ups and downs. This will in turn teach Lucas to accept his own ups and downs, and the fact that we can only control how we react to what life throws at us.

As I sit in this restaurant today waiting to pick up my son from school, writing this blog, the two songs that just played couldn't be more timely: That's Amore and L-O-V-E. I feel that it is fate—or my late grandmother, from somewhere in the universe—reminding me that our life with Lucas is all about love. Focusing on the joy and love will get us through the bumps in the road.

Lucas's mom has written for BLOOM previously: I am warrior mom: Hear me cry and roar. Follow Lucas's progress on twitter @LucasRecovers.

In the community, but alone

By Liz Lewis

What does it mean to be part of a community? To recognize oneself and be recognized as a member of a social group, neighbourhood, or everyday world? As an anthropologist, these questions are standard fare. As the only sister of a woman with disabilities and deafblindness, they are deeply personal.

On paper, my adult sister has a great setup. Katie receives government funding to live in a home five minutes from my parents, with a lovely roommate and conscientious caregivers. Yet my sister lives in near total isolation, with no friends, activities or hobbies. And I know that as an adult with complex disabilities, she is not alone.

Katie has a genetic condition called CHARGE syndrome and needs 24-hour care. She’s never communicated verbally, although she knows some signs and her expressions of happiness and dissatisfaction are easy to read.

Katie can’t drive, cook, or really care for herself, although she can feed, bathe and dress herself with a little assistance. As the mother of a toddler, I'd say that she and my son operate on similar levels. Although I'd prefer to write something lighter and more optimistic, the truth is that Katie can’t do most of what able-bodied adults, or even children, can.

These complex disabilities mean that independence, communication and social connections look different for Katie. She finds agency in deciding what she’ll have for her snack, for instance, or whether she’ll relax with television or ask to go for a ride in the car. She asserts herself by refusing to participate in an activity or by showing joy and excitement over trying something new. She expresses love and caring by sitting quietly next to someone, giving hugs, or simply smiling. She likes to pat my son on the head, but has been known to pinch him when she’s fed up.

It can take time and patience for people to learn how Katie expresses her needs, preferences and desires. Yet again and again I have witnessed her win over caregivers, professionals and acquaintances with her unique charms. This makes it even sadder to me that when I visit my hometown, where I no longer live, my sister is largely alone.

Among adults with intellectual and developmental disabilities in the U.S., Katie is considered one of the lucky ones, meaning that she neither lives in an institutional setting nor in her childhood home. Her access to a high-quality home and staff ensure that my parents don’t bear the brunt of Katie’s lifelong caregiving needs, which will become more complicated as we all grow older. Still, as both an anthropologist and a sibling, I am disturbed by what I see.

When I visit my sister, I can't help notice her neighbours’ lowered gazes as they quickly shuffle from their driveways to their own homes; we've never exchanged a word other than “hello.” I can only imagine what the children and teenagers on the block think of her house. Katie does not go for walks—indeed, I don’t believe her street even has sidewalks—so her only time outside is when she walks the 10 feet to a waiting car to take her somewhere, typically to a park or the drive-thru of a fast food restaurant. Katie might be in the community, spatially speaking, but she is not there in any meaningful way.

Even more disturbing is my sister’s lack of activities and hobbies, which would provide a sense of accomplishment and give her new social connections. For several years, she loved attending weekly equine therapy classes, but then the program lost funding and eliminated its offerings for adults with disabilities. My family investigated volunteer options, such as sorting food containers or recycling for nonprofits or donation sites, but came up short. One well-known local organization even told us that they couldn't let Katie volunteer for them because she might harm herself, offering paternalism as a thinly veiled substitute for blatant discrimination.

The longer Katie lives like this, the farther she seems to withdraw into herself. She loses skills she once had and, at least to me, seems less able to connect with others. She develops essentially anti-social behaviours, such as eating with her hands instead of a fork, which would likely be interpreted as a product of her disabilities even though they are completely new. Although I now live in another state and can no longer participate actively in my sister’s daily life, I am consistently saddened by what I see when I visit. And this is in a state that rates average or above in disability inclusion. To be sure, the situation is far worse in many parts of the U.S. and elsewhere.

The inadequacies of the current independent living and social inclusion movement are more than disability rights issues. They also connect closely to individual safety and public health. We are all safer when we have networks of people—family, friends, coworkers, neighbors and acquaintances —looking out for us. Katie has very few of these. Similarly, there is increasing scientific evidencethat social isolation is bad for our health. How might it look if we as a society began to approach social engagement for people with disabilities not as a luxury, but instead as a pressing public health issue?

While great strides have been made in recent decades regarding the integration of people with disabilities, there's much more work to do. The need to rethink what we mean by inclusion is urgent. In the U.S., only 13 states plus Washington, D.C. have closed all of their institutions and, thanks to changes in federal lawsuch structures will soon be a thing of the past. According to United Cerebral Palsy’s most recent annual study, The Case for Inclusion, since 1960 over half of our existing institutions have closed, and 16 more are slated to shut their doors by 2016.

Why not seize this transitional moment to prioritize a new approach to community services and opportunities that make social inclusion a reality, such as increasing access to recreational and employment programs for adults with disabilities? The challenges are large-scale and will require a powerful effort to effect change in existing structures, practices and assumptions. It must no longer be acceptable to equate integration with community living services. Families, self-advocates and allies must demand a more holistic, respectful form of inclusion that acknowledges the social rights and needs of people with disabilities. I, for one, think the time has come.

For more on community living and inclusion, refer to the University of Minnesota’s Research and Training Center on Community Inclusion and to United Cerebral Palsy’s The Case for Inclusion 2014. The Center for Human Policy, Law, and Disability Studies at Syracuse University also has an extensive listof relevant resources.

Please follow Liz on her fascinating blog Disability Fieldnotes or on Twitter @LizLewisAnthro. Her last piece for BLOOM was Disability was home: From big sister to anthropologist.

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