'We just fell in love with her at first sight'

Catherine and Trish Emmons and daughter Priscilla, 3, are the focus of our new A Family Like Mine video.

Priscilla, known as Cilla, was born dependent on drugs to a mother who couldn't care for her. She spent her first month in the neonatal intensive care unit in pain, on morphine, inconsolable. At nine months, Trish and Catherine adopted her.

"When we first brought her home, we noticed that she would have huge temper tantrums when we would leave her," Catherine recalls. "And I don't mean by leaving the house. I mean she would be in the living room and we'd get up to get a cup of coffee and she would start having a temper tantrum because she was so distraught that you were going to leave her. Because a lot of people don't realize that kids, babies, suffer loss. They think 'Oh, they don't remember.' But at that point she'd already suffered from two major losses. One from her birth mom, and one from her foster mom."

This is a remarkable family with great insights on parenting, adoption and celebrating differences. Thank you to social worker Barb Germon for suggesting them.

A Family Like Mine is a video series about diverse families raising children with disabilities. It's incorporated into the curriculum for second and third year medical students at the University of Toronto.

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What I consider when writing about my son

By Kari Wagner-Peck

My book Not Always Happy: An Unusual Parenting Journey comes out on May 16. Yes—I’m one of those people who finds their life experience so interesting I wrote a book about it. But first I wrote for several years on my blog about my husband, about me and mostly about our son Thorin who lives with Down syndrome.

I started the blog because I didn’t relate to much of what I was reading about Down syndrome. I didn’t fit the typical profile myself. I was 49 years old when I became a first-time mother, married to a man 14 years my junior. We adopted a boy with Down syndrome who was in foster care. I quickly realized if I wanted to read about someone like me, I would have to write it. I knew it would be funny, angry and not about how I felt about Down syndrome, but how Thorin felt about everything. About 60 per cent of the time I don’t actually write about Down syndrome. I write about us and have found that even with our quirks we are not that different than any family.

My most consistent dilemma is—is it really okay to write about Thorin? You can Google Thorin and find countless links to on-line content including photos. That thought fills me with concern and sometimes outright fear. So what over-rode my concerns to write about my son? And what restrictions do I impose? I have some thoughts.

Social justice narratives and social commentary are important

Social justice narratives and social commentary sounds stuffy, not fun and lecturing. Two things happened that made me not see them that way. When I was 12 years old two books showed up in my family’s bathroom: The Grass Is Always Greener by the Septic Tank by Erma Bombeck and Dick Gregory’s *igger. I read both within days of each other. I learned from Gregory that civil rights stories could be told in a personal, funny and sharp tone. From Bombeck I learned that the isolation of parenting in the status-conscious suburbs could be viewed in a good humored way—in spite of the fact that I was 12 and raised in a working class family.

At the beginning of this journey I justified my decision to write about Thorin because my narrative challenged existing perspectives about raising a child with a disability. I couldn’t relate to the idea of grieving a Thorin without Down syndrome. I objected to the notion that Thorin is an angel from heaven. I had no time for a laundry list of things Thorin will never do. This quote has been on my blog since day one: “I exist as I am, that is enough” from Walt Whitman’s Song of Myself. That was the premise. I told myself that by writing about Thorin I was helping to change the narrow view ascribed to all people with Down syndrome. I stick by that and I hope it is true.

Thorin is not emblematic of Down syndrome

I’m writing about Thorin to try to change a bigger world view about people with Down syndrome, but he is not a symbolic character. This one is trickier and thornier. I wrote about telling Thorin he had Down syndrome by explaining to him that he had a super power called Down syndrome and one of his powers was farting. I wanted him to know he was like everyone else.

Just days before our talk, Thorin, then 6, wore his Thor costume to the screening of the film Thor. If he loved My Pretty Pony as much as The Avengers I would have said he had a magic power and that’s likely how a Brony is created. Some mothers were reasonably upset because they assumed I was suggesting all people with Down syndrome have super powers. Some were also upset that I said farting was a super power. I should add that my husband thinks farting is a super power. Soon after I gave Thorin the genetic description of Down syndrome. He grew bored and utilized another super power by telling me to stop talking. Our original conversation would play out for years to come and in fact is the book’s epiphany.

The stories I choose to tell aren’t about Thorin’s Down syndrome but instead about who he is as an individual—his love of taking photographs, his obsession with The Avengers, his struggles with communication, his anger with being treated like a baby, his kleptomania and his storytelling abilities—take for example I Love You Eyeball Cheeseburger.

Thorin’s past is off limits

Thorin was placed in protective custody. That’s the most people know. One can assume that sort of thing doesn’t happen if a family has had a bad day, but when something harder and more tragic transpired. That information is at Thorin’s disposal when he is an adult. It isn’t for public consumption. Related to that is the fact that I want to be as respectful as possible of his biological family for Thorin’s sake. Thorin has made, for now, an evolved peace with his past that I cannot fathom, and with his “ex-mother,” as he refers to her. What I do share is the Byzantine process of state adoptions because it isn’t the typical story of family-making or even adoption. If you want a great story on how Dunkin Donuts Munchkins got us our adoption worker, you’ll have to read the book.

I do not write about my parenting frustration or wine consumption

I chose to be a parent at what is considered to be an advanced age. I didn’t expect it to be a picnic all the time or a shit show. I was grateful I had a chance to do what I had wanted for decades. My frustrations are mine. Same with all my relationships. My point of difference is not what an asshole my son is or how disappointed I am in my husband. Instead I write about my own perceptions and mistakes. I don’t find writing about parents who drink funny in general. That’s right I’m judgey. In fact I’m imperfect. I exist as I am. That’s enough.

Thorin has say in what I write about

In the early years of the blog I made those decisions for myself. Now I ask Thorin what I can write about. Consequently, I don’t write as much as I did. Lesson learned. He is a burgeoning tween—with feelings, experiences and ideas about what he does not want others to know. That’s his right and I respect it. He has crushes, but I’m not allowed to talk about on whom. He feels strongly, but I can’t always say about what. He has some ideas that are private. I’m doing a reading at a book launch party next week at a local bookstore. At first Thorin had said he wouldn’t go. When his best friend, Ella, said she wanted to attend, he said he would go but would leave while I read about him. Tonight leaving theatre class I asked, “Would you help me pick out what I read? Can I suggest stories and you decide?”

“Yes.”

“Do you think you will go outside with Daddy?”

“I do.”

Kari Wagner-Peck is a social worker and writer who homeschools her son Thorin in Portland, Maine. You can follow her at A Typical Son.

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How to build a family

Nine years ago Robyn Sheppard welcomed a son into her family through adoption. It was Deion, 7, a student she’d worked with as an educational assistant at the Bloorview School. She and her husband Norman would later adopt Benjamin, also a student in the Bloorview school, as well as their daughter Skylar. BLOOM spoke to Robyn about adopting two children with disabilities.

BLOOM: Tell us about how you met Deion.

Robyn Sheppard: I originally met him when he was two in the Easter Seals daycare where I was doing a college placement. I was only 18, so I wasn’t in a position to adopt anybody. Then I met him again when he was in Grade 1 and I worked as an EA at the Bloorview School. He was going through a hard time. He’d been apprehended from one foster home and moved to another. He missed a month of school and when he came back he was sad and said: ‘I just want a family to love me.’ I would go home and tell my husband about this kid. We were just planning our wedding at the time. ‘Maybe we should look into adopting him?’ my husband said. He’s got a big heart.

BLOOM: How old is Deion now?

Robyn Sheppard: He’s 16 and in Grade 11. He goes to a mainstream high school. He loves Pokémon and he loves to draw and play video games. He has a few close friends he spends his time with. He’s very independent—he manages all of his own self-care and own laundry. He has very mild cerebral palsy and ADHD. He’s a really good kid and we’re very lucky.

BLOOM: How did you meet your son Benjamin?

Robyn Sheppard: Less than a year after we’d adopted our daughter—we adopted them out of birth order—I met Benjamin when he was in junior kindergarten at Bloorview. He was four and not very verbal and just learning to walk. He had a lot of trouble regulating his emotions and his behaviour. He was adorable. He was a little monkey who got into a lot of trouble and had a hard time of things. But he had an amazing smile and was really interested in cars and trucks and police officers. He’d recently moved to a new foster home and wasn’t happy there. We were at an AdoptWalk event and one of the children’s aid workers came up and said: ‘Did you know there’s another child at Bloorview available for adoption?’ We said, no, we can’t do another adoption.’ But the seed was planted and of course we couldn’t just leave him.

BLOOM: Was disability a factor in why your boys were placed for adoption?

Robyn Sheppard: I believe it was absolutely. I think a lot of birth families that have children with disabilities are already struggling to raise children and when you add in the disability factor and the extra care, you can’t do it. They tugged on our heartstrings and we saw these beautiful kids and didn’t want to walk away. It seemed everyone had been walking away in their lives. It would be nice if other people were interested in adopting kids with disabilities because there are so many of them.

BLOOM: What kind of a kid is Benjamin now?

Robyn Sheppard: He’s a funny guy. His interests have changed and he’s into sports and fashion. He has cerebral palsy and uses a wheelchair for long distances. He needs assistance with all of his healthcare and dressing.

BLOOM: What was the most challenging part of your adoptions?

Robyn Sheppard: Just figuring out how you’re going to raise these kids who have already had such a hard start. They’ve already had so many influences in their lives and all of a sudden we’re new parents and we don’t really know how to parent. It was a big learning curve for sure. When we first got Deion we’d never been parents and all of a sudden we were parenting—things like knowing how to enforce rules without being too strict. I think we were too strict.

Ben had had a harder start to his life so it was difficult for him to adjust. He brought new challenges with a lot of difficult behaviours and we still have challenges with him. We think he also has fetal alcohol syndrome and it’s affected how he can process things. When we adopted him he was still going to school at Bloorview and we live in Whitby and I’d drive him every day. He’d have major, major meltdowns in the car.

The mental health support in this province is non-existent and we can’t find help that is appropriate for Ben. They look at his physical disability and dual diagnosis and say send him here for this aspect, and send him there for that aspect. But we can’t separate him up. He’s 120 pounds now, so if he does get out of control I’m not physically able to handle him. It’s really difficult. He had hip surgery in March and was at Bloorview for four months. That was a long, difficult road for him and he’s still experiencing a lot of pain.

BLOOM: How do you manage when you can’t seem to find the mental-health help for Ben?

Robyn Sheppard: We take it one day at a time, to be honest. Some days it’s really overwhelming.

BLOOM: What kind of changes have you seen in the boys?

Robyn Sheppard: They’ve both developed more confidence. Deion has his own personality and he’s comfortable with that. He feels secure and loved and he knows that he’s good—that’s the biggest change for him. Benjamin’s personality has really come out. He’s always singing and he wears bright gold shoes and loves to talk about baseball and basketball.

Love goes a long way, but you also need other supports.

BLOOM: Are you able to get help?

Robyn Sheppard: Ben goes to Holland Bloorview’s respite program once a month for a weekend and that’s been a great physical and mental break for us. He loves the nurses and rec programs.

A lot of people don’t know that children’s aid provides an adoption subsidy that is not necessarily income-based if they’re placing a child with significant needs who needs extra support in the community. They give you a daily per diem that adds up to be quite significant. It makes a big difference in being able to meet those extra costs. Just the months that Ben was an inpatient at Holland Bloorview were very expensive months for us. It’s made a big difference in what we can provide for our kids.

I wish there was more emotional support. They say there’s post-adoption support, but whenever I’ve reached out to the children’s aid they haven’t had anything for us.

BLOOM: Your adoption is interracial. Have there been issues related to that?

Robyn Sheppard: There have been some. When we first got Deion I had no idea I had to bring him to a special barber. I took him to First Choice and that was a disaster. He was culturally raised in a very white foster family and at this point he’s not interested in his roots but we would love for him to learn about that in the future.

Ben is much more culturally black. He would like us to be really into all of the black basketball players and he wants to dress like them and have his hair done like them. I don’t even do my own hair and I’m not very fashion savvy. So that’s been a bit challenging. We incorporate his culture into our lives as much as we can and encourage connections in the community.

BLOOM: What advice would you give a parent thinking about adopting a child with a disability?

Robyn Sheppard: Take it one day at a time. Just because they have a disability doesn’t make them any less valuable. They have a lot to give.

BLOOM: How has adopting children with disabilities changed you?

Robyn Sheppard: It’s been eye-opening to understand more of what other parents experience every day and how hard it can be to navigate the medical system and the mental health system, not to mention schools and IEP meetings. There are so many more things for you to navigate every day. It’s overwhelming. I wish it was easier to keep it all under one umbrella. But there’s one piece over here and another piece over there.

The biggest change is that I used to be very quiet. I didn’t really seek out people. I was very introverted. You can’t be introverted when you’re raising kids with special needs. It brought out the mama bear in me and made me face things I wouldn’t have before. It brought me out of my shell.

BLOOM: Do you think differently about life now?

Robyn Sheppard: Yes. The things my kids have been through and they’re still smiling every day. It’s humbling. Some people look at adoption and think all the problems go away. They don’t. Their early experiences affect every aspect of their lives.

BLOOM: Had you planned on adopting prior to meeting your boys?

Robyn Sheppard: It was something I’d always wanted to do eventually, but it wasn’t on the radar. But these situations presented themselves.

By Louise Kinross

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It's hard to tell when special-needs parents are 'drowning'

By Tina Szymczak

In 2010, our darkest times as a family, I began to use the analogy of a swimming pool to describe the difficult parts of our adoption and disability journey. I hope the analogy will strike a chord with other people who struggle to care for another family member, young or old.

When my husband and I decided to pursue adoption, we never expected it to be easy. However, there was no way to know how very hard it would be, until we’d experienced it ourselves. Throughout the adoption process we were told again and again that to bring an older child into our home from the foster care system would be a huge leap of faith.

I now picture the adoption process as a huge leap into a swimming pool. In the adoption classes everyone stands around the pool. During the home study process and disclosure you get your feet wet. If you want to adopt after that, you better be willing to jump into that pool with your child, whether you know how to swim or not.

When we were given information about our son we did what we thought was due diligence. We asked all the right questions. We jumped in the pool knowing that our son couldn’t swim, but convinced he would learn, with us there with him. We were naïve and thought that if we needed services we’d just advocate for and get them (try not to laugh at me—I’d been working in early intervention for years and should have known better).

After a while we grew tired of holding our son up. We had to face the reality that he wasn’t learning to swim, no matter what we did. We called in more experts. They blew us out of the water when they told us he’d never learn. We grieved and reeled from this new information, but refused to give up.

We called for back-up, but what we got was a bunch of people standing around the pool. They wouldn’t get in with us. Some would sit on the edge and get their feet wet and give us helpful suggestions. That would buoy us for a little while. Most refused to sit. They’d stand in the distance and judge us and occasionally ask us if we were ready to give up and give him back.

People would come and go. Occasionally we were left with no one. A few times some amazing soul would come along and, when no one was looking, jump in the pool and hold up part of my son. Then their boss would come along, or it’d be the end of their work day, and they’d have to get out.

Our son’s diagnoses kept piling up—first Tourette syndrome, ADHD and obsessive compulsive disorder. Then later, autism and sensory-processing disorder. Then the biggest one: bipolar disorder.

After many years our son got bigger and he grew frustrated by his lack of progress.

We no longer cared if he ever swam on his own. We just wanted him to enjoy being in the water again. We knew we needed help to find other ways to accommodate him in the pool.

We looked around. We yelled for help. People came back to the side of the pool, shaking their heads and questioning how we’d ever managed to keep him afloat for so long. We politely but firmly asked for help. They asked if we wanted to give him up, send him back. They wanted us to admit defeat and get out of the pool, leaving him there. That was the only way the system could help us, they said.

We refused. We began splashing and making all kinds of noise. We blew whistles and got the attention of the people in charge. All the while though, I was beginning to drown. All those years of holding my son up had taken their toll: my body was failing.

Some wonderful people jumped in and lovingly took our son, but I was drowning. I couldn’t even begin to tell others what was happening. I later wondered how so many good, well-intentioned people never recognized what was happening to me.

Then I read an article called Drowning Doesn’t Look Like Drowning.

“The Instinctive Drowning Response—so named by Francesco A. Pia, Ph.D., is what people do to avoid actual or perceived suffocation in the water. And it does not look like most people expect. There is very little splashing, no waving, and no yelling or calls for help of any kind.”

Drowning, from the surface, is quiet and undramatic.

Isn't it like that for us as parents? People look at us and see the “together” image we’re trying so hard to portray. We hide our weakness and fear—often times because we know people won’t take us seriously or our child won’t receive something—an intervention or placement—they need. Even as we’re unravelling, sobbing or screaming on the inside, we dress nice, fix our hair, arrive early and sometimes even bring cookies.

We keep on top of referrals that need to be made, reports that need to be sent and IEPs that need to be revised. We deal with meltdowns, illness and messes at home. We cry at night when our children are in bed because during the day we need to hold it together. If we don’t do it, no one will. We find the strength to call for help for our children. But we can’t do the same for ourselves.

We drown silently.

It wasn't until my son went into a therapeutic residential placement that I finally had time to take a step back and sort out what was my need and what his was. I realized that I needed to go back to therapy and I needed to reconnect with my friends that I'd let fall by the wayside. I also needed to take care of myself. I had cancelled and rescheduled appointments for dental, eye care and physicals so many times I'd lost track. Probably the biggest thing I did to stop drowning was to lay it on the table for my spouse so we could figure out who would be responsible for what. He turned out to be a great supporter and partner.

I don’t want to imply that our whole journey has been horrible (I’d jump in the pool again for our son, without hesitation). There have been many more loving, touching, heart-warming times. But I’m writing about the periods that are very difficult. As my friend and fellow parent wrote: “Yes there’s an idealistic tropical paradise pool and there is also a shark scenario, but reality is somewhere inbetween.”

As I assist other families and work in our community to change services, I’ve tried to pinpoint common “drowning” signs in families like ours.

If the parent is avoiding social events, holing up in their house or crying all the time, then you need to gently step in. Listen to them. Be non-judgmental and ask questions, so we know you're listening and interested.

It can be hard to know how people are doing if they don’t share their struggles, but you can always do the following:

Make meals or give gift cards to order food. Don't ask if you can do it. Just do it.

Offer to take the other children when parents have to take their child with a disability to appointments.

See if your employer will let you donate vacation or sick days to your coworker. We tend to use up a lot of days for sick kids, or when our kids are kicked out of school.

Come over and do a couple of loads of laundry.

Drop a card or quick note to let us know you’re thinking of us.

Let us vent about our kid or a particular situation that’s developed. Don't judge us.

Remind us that no one expects us to do it all alone

In addition to teaching people what to look for in parents who are barely treading water, perhaps we could adapt the pool and hire trained lifeguards to get in with us.

You can follow Tina Szymczak at Spirited Blessings.

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Happiness is parenting a special-needs child

By Val Lusted

I never thought I’d be writing my very first blog with this title!

However, when 2015 appeared on the horizon, I decided to start journaling on the concept of “happiness.” I used the 22 lessons from a film I’d seen called Hector and the Search for Happiness as my template, noting when I felt happy. Simple right?

It’s eight months into my New Year’s resolution now and as I look back I find it
interesting that most entries relate to my role as a mom to Evan, 15. My husband Rick and I adopted Evan from the Republic of Georgia when he was five months old.

We were about two years into our journey as a family when we started down a scary, unknown path of diagnoses for Evan. A path which would deeply influence the way I view the world and my role as a parent.

Evan was born with complex neurological issues that resulted in an array of diagnoses including microcephaly, ADHD, learning disabilities, hearing loss, significant oral-motor and speech and language articulation challenges. Most recently he is showing signs of social anxiety.

All of these challenges will impact Evan’s future and ours.

But back to my “happiness” journaling. Here are a few excerpts.

Lesson 2: Happiness often comes when least expected

“…the look of shocked surprise on Evan’s face, followed by a smile, as he watched the puck enter the net to provide the Hawks with the winning goal against North Toronto. His gaze followed the puck, then scanned the nearby crowd of fans until he found my eyes. Looking at him and smiling back, ear to ear.

That evening game, the win, the goal, the resulting burst of confidence, seeing my son fully engaged in the play—it had followed an equally blessed and unexpected social invitation earlier in the day. Evan had been invited to join some of his teammates at an Air Canada Centre Juniors hockey game. The boys had travelled together via subway to the arena. Evan had been afraid to go, fearing another anxiety episode might erupt. But Rick and I had talked him through it: offering the usual reassurances, rehearsals and a review of his other anxiety-management strategies.

We asked him if he trusted us (and his teammates) that there was no way he was being set up for failure. He acknowledged how important it was to continue to face his fears.

Evan had gone. He’d had fun. He’d survived. He’d felt like he belonged that day.

Today has been a good day. And that has made me feel happy.”

Or

Lesson 16: Happiness is knowing how to celebrate

“…On the way home, I reflected on the session [with Evan’s psychologist] and noticed how my body, my shoulders, felt lighter. I felt like I had just met a new ally. I felt hopeful. I remembered the text I’d received earlier in the day, along with a voicemail message from Evan. He’d gotten 75 per cent on his music test. Yup. Time to celebrate. I bought a dozen doughnuts to share with my family.”

And

Lesson 14: Happiness is to be loved for exactly who you are

“...I had the good fortune to spend five whole days with Evan, away from work, household chores and other day-to-day stressors. We shared the time with extended family members at my sister’s cottage, initially garage sailing, napping, lounging, visiting and eating before a local music festival began on the weekend. Because the main cottage was full of occupants, Evan and I were offered accommodation in The Loft (the teen hangout, above the garage).

I have to tell you…the five day visit was so good for my relationship with Evan. I felt so much more relaxed, I was able to actually have conversations with him. I was able to enjoy his sense of humour! It was such a great bonding experience. I felt so blessed that he didn’t seem to mind spending time with me, his middle-aged mom!

How many moms of teenagers have that gift?

At the festival or at the cottage, he’d go off to spend some time alone or to explore some of the vendors. These are moments which I think nurture his sense of independence and 'typical teen time.'

Next year, Evan is even hoping to invite a hockey teammate to stay in The Loft with him, instead of me. Now that would be a wonderful gift sure to enrich my sense of happiness.”

Try googling “happiness is parenting a special needs child.” You’ll find lots of like-minded people to motivate you to continue on your journey. The BLOOM blog and other online resources are equally inviting and inspirational.

Tonight, I am practising gratitude for all of the gifts Evan continues to give to me.

I will continue to journal what makes me happy, using the 22 lessons as my trusty template of positivity, even though I know there will be tougher times ahead.

Val Lusted is a social worker in the Specialized Orthopedic and Developmental Rehab Unit at Holland Bloorview Kids Rehabilitation Hospital.

 
































Words of Wisdom from Hector and the Search for Happiness

Lesson 1: Making comparisons can spoil your happiness.

Lesson 2: Happiness often comes when least expected.

Lesson 3: Many people only see happiness in their future.

Lesson 4: Many people think that happiness comes from having more power or more money.

Lesson 5: Sometimes happiness is not knowing the whole story.

Lesson 6: Happiness is a long walk in beautiful, unfamiliar mountains.

Lesson 7: It’s a mistake to think that happiness is the goal.

Lesson 8: Happiness is being with the people you love.

Lesson 8b: Unhappiness is being separated from the people you love.

Lesson 9: Happiness is knowing your family lacks for nothing.

Lesson 10: Happiness is doing a job you love.

Lesson 11: Happiness is having a home and a garden of your own.

Lesson 12: It’s harder to be happy in a country run by bad people.

Lesson 13: Happiness is feeling useful to others.

Lesson 14: Happiness is to be loved for exactly who you are.

Lesson 15: Happiness comes when you feel truly alive.

Lesson 16: Happiness is knowing how to celebrate.

Lesson 17: Happiness is caring about the happiness of those you love.

Lesson 18: The sun and the sea make everybody happy.

Lesson 19: Happiness is a certain way of seeing things.

Lesson 20: Rivalry poisons happiness.

Lesson 21: Women care more than men about making others happy.

Lesson 22: Happiness means making sure that those around you are happy. 

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BLOOM media roundup

If you haven't seen the first video in our A Family Like Mine series, covering diverse families raising kids with disabilities, check it out. Rob and Dave, above, are a married couple who adopted Owen, who has autism. They talk about their adoption journey and how Owen has settled into their family and thrived.

And in other news:

'I didn't feel strong enough' The Telegraph
Brilliant animated account of a dad whose daughter is born with medical problems and diagnosed with cerebral palsy.

When it comes to disability, is it better to look 'different' or 'normal?'
BBC Ouch podcast
Adults with disabilities talk about pressure to improve their appearance. Should a woman with a prosthetic eye wear dark glasses? Should a woman who is a double amputee wear skirts? "It's the people staring that really gets on my nerves," one says.

Guinea pigs are autistic child's best friend The New York Times
When playing with guinea pigs at school, children with autism spectrum disorders are more eager to attend, display more interactive social behavior and become less anxious, according to a series of studies.

Anesthesiologist trashes sedated patient—and it ends up costing her
Washington Post Listen to the degrading comments two doctors and a medical assistant make about a patient who's receiving a colonoscopy. The conversation was recorded on the patient's phone. Shocking and makes you wonder.

For disabled people like me, cuts spell the end of independent living The Guardian
Penny Popper, a British writer and performer, writes about the end of England's Independent Living Fund, which covers the cost of attendants.

Comedian with a stutter gets the golden buzzer from Howie Daily Best Like
A baseball injury damages a young man's vocal chords, causing him to stutter. He performs as a comedian on America's Got Talent.

Esme can read The New York Times
The mother of a child who can't speak, point or sign writes about realizing her daughter can read.

Texas to require cameras in special-ed classrooms Disability Scoop
"We heard testimony from students with special needs and parents whose lives have been forever changed by mistreatment in the classroom," state Sen. Eddie Lucio, Jr., who authored the legislation, said.

Is special education racist? The New York Times
"Black children face double jeopardy when it comes to succeeding in school," write two researchers. "They are far more likely to be exposed to the gestational, environmental and economic risk facts that often result in disabilities. Yet black children are less likely to be told they have disabilities, and to be treated for them, than otherwise similar white children," according to a new study.

When doctors become patients A Better NHS blog
Amazing accounts of doctors who become patients and how it transforms their practice.

New theory suggests disability played critical role in our evolution Daily Mail
British anthropologists argue that disability is what made us human, promoting our social, empathetic and flexible natures.

TDSB school asked my autistic student not to attend graduation Heart Learning Centre blog An after-school program writes about a kindergarten child with autism being asked to come in later one morning so that she misses graduation ceremonies.

Holly, Alex and Jaxson 1,000 Families Project
A gay couple begin the adoption process with one request: They want a child with Down syndrome.

Doctors go online for medical information, too Wall Street Journal
When a child has a rare condition, doctors look to online groups for families who can shed light on their experience. Our BLOOM contributor Barb Farlow is referenced in this article, as is a paper she and two doctors published in Pediatrics on the experience of parents of 272 children with Trisomy 13 and 18.

Horrified family finds daughter's photo on prenatal screening ad CTV
Without the Canadian family's consent, a photo of a girl with Down syndrome that had been posted on her mother's blog was used in a building-size banner advertising a Swiss prenatal test to detect Down syndrome.

Why isn't it the right time for NEO Kids? Northern Life
An eye-opening editorial about the obstacles a proposal for a pediatric hospital in Greater Sudbury is facing, despite widespread parent and medical support. Includes disturbing statistics about the health of children in Northern Ontario vs the Ontario average.




 
 

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Does disability make us human? Or is it a threat?

By Louise Kinross 

In the last couple of days three stories on social media jumped out because they portray such different, opposing, pictures of what disability means in our culture.

Last night CTV reported that Swiss genetic lab Genoma used a family photo of a child with Down syndrome belonging to a Canadian family in a building-size banner to promote their prenatal test for diagnosing Down syndrome in a fetus.

The photo was used without consent or knowledge of the Canadian family.

Genoma says it acquired the image legally through a stock photo company and is taking legal action against them.

It's both horrifying and not surprising.

Horrifying that a parent would find a beloved photo of their child in an ad suggesting that a child like her should be aborted. And not surprising in that a company is trying to illustrate in its ad the reason for, or 'benefit,' of their test.

What is surprising is that a company wouldn't think twice about purchasing a stock image of a living, breathing child and using it to promote public questioning of the worth of children like her.

It reminded me of when a Duke University researcher contacted me last year to let me know that my son's rare genetic deletion was now on the list of disorders identified by microarray analysis of a fetus’s DNA. I wrote about how that felt, a bit of a knock-out punch, here.

Earlier this week The New Family posted this story about two Canadian moms who set out to adopt with one request: they wanted a child with Down syndrome. This is how one of the moms, Holly Graham, explains it:

"Rewind 25 years to when I was a little girl. I had a best friend named Mandy who just happened to have Down syndrome. She was fun, loving, friendly and magical. I always knew Mandy was different, I didn’t know why, and it didn’t matter. I just knew that I loved every single thing about Mandy. One day I came home from school and proclaimed to my mom that I was going to have a baby just like Mandy one day!"

And now Holly and her partner Alex are the proud parents of Jaxson, age 1, who has Down syndrome.

On the one hand, you have an entire industry devoted to preventing the birth of a child with Down syndrome. And on the other, you have a couple who choose to parent a child with Down syndrome.

And finally, there was this piece published a couple of days ago, which I read this morning, about British anthropologists who suggest disability itself is what made us human from an evolutionary standpoint, promoting our social, empathetic, flexible natures. This line of thinking fits with the views of French geophysicist Xavier Pichon, who helped create the field of plate tectonics.

As Xavier told BLOOM in an interview: "What I discovered is that the major difference between human societies and other societies of living beings is that humans have a capacity for empathy, which leads them to take care [over the long term] of those who have been affected by major suffering and handicaps. I was very impressed by studies of skeletons of 100,000-year-old humans which demonstrated that these people took care of heavily handicapped people [for decades]. This is most remarkable as these people were nomad, hunter-gatherers who lived in groups of 20 to 25 people at most."

So where does the truth lie?

Earlier this week my team met with Dr. Peter Rosenbaum, a former chief of medical staff here who heads up the CanChild Centre for Childhood Disability Research at McMaster University. Yesterday Peter, a developmental pediatrician and children's rehab researcher, was awarded Holland Bloorview's Medal of Excellence in Childhood Disability.

He noted that medicine has swung too far to a biomedical, science side focused on "cure," forgetting that the most important quality in a health professional is human "care."

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'You get the one you're supposed to'

By Kari Wagner-Peck

When my husband Ward and I started dating I was 42 years old and he was 29. Yeah, I have a trophy husband.

We eventually wanted a child. We briefly explored fertility counselling, but after I cancelled our introductory appointment with the clinic—twice—I had to explain to Ward that I didn’t want to be pregnant. A biological child wasn’t important to me. Understandably, it took a while for my husband to come to terms with the fact that adoption would be our path to a child.

We couldn’t afford to adopt internationally so we decided to go the route of state adoption. It was simple really: we wanted a kid and the state had free ones through their foster-care program. We attended their classes and entered into the Byzantine world of state adoption.

What followed was months of excruciatingly close calls and near misses: we kept hearing about children who might be available for adoption—but turned out not to be.

Almost nine months to the day our adoption classes ended we stood next to each other in our dining room listening to a voicemail from Cathy, our foster-care worker. It went something like this:

“Hi guys! I met someone today who may be a match for you. He is a beautiful boy who is two years old and (pause) he has Down syndrome. Let me know what you think.”

What? Hadn’t we made it clear the biggest disability we were capable of handling was a child who was left-handed or colour-blind? We were first-time parents and we weren’t sure of our skill set (of course you don’t need a skill set, you just need to love your child, but we didn’t know that then!).

“Did she say Down syndrome?” I asked Ward.

“We better listen to that message again,” he said.

We played it six or seven times, until we were absolutely convinced she had said Down syndrome.

“I don’t know why, but that doesn’t bother me,” said Ward.

“Me neither,” I said.

We were silent for a few minutes.

“Do you feel calm?” I asked. “Because I feel strangely calm.”

“I do, too” he said. “Everyone has something. We just know what his something is.”

He was right. Everyone in foster care—and really in life—has something that makes them more vulnerable.

We talked a little more and realized there must be a reason we both felt this sense of calm. It wasn’t logical. It wasn’t planned. Something had happened that made us calm.

We decided to trust it. That was the extent to which we considered Down syndrome at that moment.

I called Cathy back and told her we were interested.

Then I started researching online. Googling ‘Down syndrome and adoption’ brought up mostly Christian adoption websites. Many people who choose to adopt an infant or child with Down syndrome do so as a part of their religious practice. That wasn’t us.

I was shocked by one fact I learned in my search: upwards of 90 per cent of women who discover they’re pregnant with a fetus that tests positive for Down syndrome abort. I had no moral judgment about their decision. I did, however, find it interesting that we were considering an option most people would reject.

I called a couple of friends who I remembered talking about families they knew with a child with Down syndrome. Without exception, the first thing anyone talked about was grief. These stories were essentially the same: they were about parents not getting the child they had planned on—the one without Down syndrome.

I spoke to a woman who had a teenage son with Down syndrome. She was shocked we would consider this: “I love our son,” she said, “but I wouldn’t seek it out.” She added: “I wonder if you will end up grieving who he could have been, too?”

“What about who he is?” I wanted to say.

I’d known about our kid—as I’d started to think about him—for only a few weeks then, so I was surprised that what she said made me angry. I was already feeling protective.

When we shared the news of our adoption with friends and family we found out what people really think about kids with Down syndrome. No one said “Hey, awesome you found a kid!” Instead, we heard “Why do you want to do that to yourself?” or “That sounds hard” or “Don’t do that, please.”

These reactions got to me and I started questioning things. I shared my concerns with my husband. He wasn’t moved by any of it. But I just couldn’t stop. Every few days I had some new tidbit of negative information about what to expect when you’re adopting a child with Down syndrome.

The last straw was when I told Ward that I’d talked to a woman who said she and her husband still changed their son’s diapers—at age 13.

“So, do you think you could change a 13-year-old’s diaper?” I asked, baiting him. “I mean, really, could you?”

“If it was just any 13-year-old boy, no,” he said. “But, if it was our son, I could.”

That was the heart of the matter. This boy wasn’t just any boy. This boy would be our son.

“Hearing all of these doubters and reading the information is frightening,” I said.

“So stop listening to it, kid,” Ward replied.

And that’s exactly what I did. I stopped my online searching. I stopped listening to other people’s fears, anxieties and doubts. Instead, I began to wonder about the emotional life of my son, who I hadn’t yet met. Children in foster care don’t get there by having stellar families. I thought a lot about how we might help our son overcome his own feelings of anxiety and fear and loss.

A social worker who was a 20-year veteran of state adoptions told us early on in the process: "You get the one you’re supposed to."

She couldn't have been more right.

This post is a compilation of pieces originally published on Kari Wagner-Peck’s blog A typical son. She’s now homeschooling her son Thorin (in photo above centre, with Mom and Dad), who became part of the family at age two and is now eight. Kari has a master's degree in social work and is a freelance writer and development consultant. She and her family live in Portland, Maine.

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'You are going to be Dads'

At a recent BLOOM event I met a new dad, Rob Foslett. Rob's face lit up when he told me that he and his partner had recently adopted a young boy with autism. Of course I wanted to see pictures, so the next day Rob e-mailed me some. "It's been a great 39 days since Owen came to live with us and he has made our lives so much better!" he wrote. Of course I wanted to know the WHOLE story, so Rob wrote it and here it is! Louise

By Rob Foslett

I have a great life.

But three years ago, at age 46, this nagging feeling that something was missing in my life and relationship took hold.

My husband David, my best friend and soul mate, and I had a plan: We’d retire early, move back to Nova Scotia where I grew up, travel and get involved in community life.

But still, I felt alone and empty. I quit my well-paying job and spent a couple of months trying to figure out why.

I made a list of 20 things I wanted to achieve in my life. Number 20 turned out to be adoption. I realized the emptiness I’d been feeling was a sense of incompleteness that we weren’t a family.

David and I had been a gay married couple since 2004. I knew David was happy with our relationship and liked our life plan, but I was about to totally turn his world upside down by contemplating parenthood.
 
I love a challenge and I love change, but was David the same? This would be a true test of our relationship.

The first time I mentioned parenthood David stared at me like I was on some illegal drug. “No, I am serious,” I said. “We would make great parents and help out a kid who really needs us.”

I think he thought we were too old to do this, but I felt we had a lot of love and support to give.

David and I started the process by reaching out to Toronto’s Children’s Aid Society. We went through the phone screen and the in-home visit without a hitch. Then David went to the Adopt Ontario website and showed me a boy with a smile that left me speechless (more to come on that later).

The adoption process is long, soul-searching and intrusive. It includes being assigned a worker, education classes, police checks and interviews. We learned so much in the classes we took. We had three great presenters and they made us think about why we were adopting and how to parent—especially how to respond to a child who had experienced neglect and how to parent the child through the loss of their birth family and foster family. I started our adoption binder.

Were David and I ready for this leap? We decided we were. And we decided to adopt a child with special needs. My nephew, who is now 17, has a disability and I couldn’t ask for a better nephew, one who’s more loving and caring and focused on retrieving a pamphlet wherever he goes. My nephew has won awards at science fairs and his big thing is collecting brochures on everything. Last count he had over 5,000, all in order and on his computer.  

David works as a civil servant so his resources were vast and he had some experience with special-needs kids, so his comfort level was high. David knew lots of people who understood children with special needs and could talk to us about parenting and how to find resources. And answer every little question we had, like "Do they need round-the-clock care?"

I couldn’t get that little boy’s smile out my head.

As we progressed towards completing our homestudy with our social worker Susan, I sent for information on that little boy with that smile that made me smile.

It turned out that Owen had autism. You would think it would scare me. It didn’t, nor David. We had been reading up on applied behaviour analysis and the familiar traits of children with autism. The more I looked at Owen’s picture the more I felt this bond developing and I needed to know more.

February 9th this year was a date I’ll never forget. We were invited by our worker to go to a presentation that was being held by the various Children’s Aid Societies in our region. In the first part we heard real families who'd adopted and were living day to day now with their new child. They gave a very insightful look at adoption from the perspective of the adopting parents and the foster parents. After the presentation we had lunch and were told we could go through some rooms to see profiles of the various children up for adoption.

David and I walked around and found Owen’s profile. My heart stopped. And I mean that. It felt like we were so close to hugging him, but it was just a picture. It was nerve-wracking. The non-adopting world needs to understand that this experience for adoptive parents is just as much of an emotional rollercoaster as the traditional route of trying to have kids.

Would we be accepted to the next step? Who else was interested in this child? What would the interview process be like?

All these thoughts flooded our minds.

But I didn’t care about any of that. I saw him and knew he was the one. I turned to David.

“He’s the one,” I said.

David is the most supportive guy I know. But this time I could tell he was a little scared. And so was I. We had questioned becoming parents at our age, and being two guys, many times, but Owen took hold of our lives through that one picture.

Blondish brown hair, big smile, bowler haircut and red t-shirt. I still have the picture.

We filled out 12 more pages of paperwork and gave it to Owen’s worker. This paperwork was supposed to determine our true interest in Owen, and to demonstrate that we would be fit parents who could support him now and all his life.

Our worker e-mailed to say we’d been chosen to come in for an interview by Owen’s resource team, along with another couple. My heart sank at hearing there were other prospective parents. I felt alone, but I didn’t want to tell David as we were supporting each other. We didn’t talk about the other couple but instead we prepared for the presentation. It was on May 16th at 10:30 a.m.

I bought a pair of lucky runners—Adidas Retro High Tops—and we felt good. We walked in and Owen’s resource team was waiting for us. We learned that the other couple had decided not to go forward with their application for Owen. I was still nervous yet happy.

I gave everything I had and the meeting lasted about an hour-and-a-half. We were told we would know the team’s decision within 24 hours.

We decided to go to the nearest Canadian Tire and pick up a few things. I remember standing with the cart as David shopped, getting tears in my eyes, just thinking and fearing that maybe Owen wasn’t going to join our family. We drove home and got up to the steps of the house and heard the phone ringing.

“It’s probably a telemarketer,” David said. I picked up the phone and Owen’s worker was on the other end.

“Are you sitting down?” she said.

“Yes,” I said.

“Well, you are going to be Dads.”

I cannot put into words what I felt at that moment: a thousand emotions all at once. David and I hugged each other and cried.

And now the rest is history. We met Owen and now have more videos and pictures then we can count.

Owen is in school and has been accepted at the Geneva Centre for Autism for further therapy. I am actually right now sitting with him on the sofa as he watches his favourite thing on his iPad—subways. Owen is totally fascinated with subways and we have a Saturday ritual where we go each Saturday on the TTC and ride them. He can tell when a new subway car is coming, and when it’s an old one. He can tell the difference in ring chimes and knows what stops are most important: like David’s work, the Eaton Centre and our stop for home.

We have been challenged by him at home. One of Owen’s autistic “focuses,” as I call them, is doors. His outlet for overload of stimuli is opening and closing the front and back doors. We have tried to redirect him, as we say in the autism realm, by allowing him three specific kitchen cabinets that he’s allowed to open. We weren’t worried about him bolting out of the house as much as we were worried that he would catch pneumonia. You see, Owen would stand on the porch with just his pull-ups on and watch the door open and close if he could.

I guess it’s a good sign that he challenges us. A child with special needs I believe needs to be understood for who he is—for his strengths, but most of all for the love he can give. And Owen gives a lot.

I love my son. I cannot explain in measurement or precise words, but when I look at him I have the biggest smile and feel true happiness. David takes Owen on Jeep rides. After riding the subway, Owen’s favourite thing is to ride in the jeep to the park and go on the swing.

My most cherished memory of the three of us happened at our local splash pad. We’re laying on our blanket, the sun is warm and shining and the trees are gently swaying. Owen’s cuddling with us and looking at pictures of us on our iPhones.

“Is that me and Dave and Rob?” he asks quietly. 

“Yes, Owen,” Dave says. “That’s us. Are you happy, Owen?”

Owen replies with the hugest smile.

“Where’s Toopy and Binoo?” he asks. Toopy and Binoo are characters on a cartoon from Montreal and he loves them to death.

I guess that’s as good as we’ll get from him, I think. 

Then, out of the blue, he says: “I’m safe.”

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'They are each so valuable and perfect'

By Nikki Cochrane

I never thought that at 24-years-old I'd be a mother to seven children with special needs, but that is exactly where life has taken me. I live in India with my best friend and serve with Sarah’s Covenant Homes, an orphanage for abandoned children and young adults with special needs. I'm a foster mother to seven children aged five to 16 with a variety of diagnoses, including cerebral palsy, autism, blindness and HIV. I can’t imagine my life without these seven little people in it.

Leading up to my time in India, I worked at March of Dimes in Toronto in the Conductive Education program and did my Developmental Services Worker school placement in a Grade 1 class at the Bloorview School. I was able to see a life where children with special needs are children first—where they are loved and accepted and given the tools they need to thrive.

Here in India life is very different from what I experienced back home. My kids were all abandoned by their birth families. They were sent to a government orphanage as babies and many never left their beds. My five- and six-year-olds, whose only diagnosis is blindness, can't walk or talk due to the neglect they experienced in those formative years. My kids came under the care of Sarah’s Covenant Homes in 2009, and this July, we moved together as a family; the first real family they've ever had.

We do therapy on the balcony every morning, and we have seen huge strides. In the past week, with the help of a set of ankle-foot orthotics donated from America, one of my little guys stood all by himself for the first time. He can now stand for over three minutes and tries to high-five everyone who watches him. My little girl, Jasmine, who is blind, has learned how to feed herself and is no longer dependent at meals. 

We don’t have fancy equipment. With no wheelchair for Molly, we improvise the best we can with chairs, using scarves as chest straps and pillows to keep her positioned properly. 

Many Indians believe that people with disabilities are cursed, and so our kids aren’t widely accepted in their community. Lily, whose cerebral palsy makes speech difficult for her, and who is unable to walk independently, is very bright and would thrive in school. A school accepted her last year, but kicked her out shortly after. We are homeschooling her in the hopes that if we get her to a certain level, they will see her potential and be unable to say "No." I hate that anyone would not see the potential in my kids, because they are each so valuable and perfect.

Last week we took the kids to the park. Parks in our city are gated and the gates open at 5 p.m. Old men come to sit on benches and children and their parents flock to play on the equipment. Of course, none of it is at all accessible, but our kids have so much fun, and it is one of the only places with grass in the city, which our kids love to feel and smell.

I waited in line for the swings with my little girl, and finally it was our turn. Not wanting to sit her on the swing by herself, as she may fall, I sat down and put her on my lap and began to swing. She threw her head back in joyful laughter, which was stopped short when the park "watchwoman" stormed over and demanded that we take our group and leave.

I ignored her and kept swinging. She yelled again. She reached out to grab the swing to hold it still, pointing to the street. Not knowing the words in Telugu that I wanted to tell her, I began arguing in English, telling her that my children have just as much right as any other child to be here and to play. Some parents stepped in. Some on her side, pointing to the street, and others on my side, translating what I was saying. Eventually, she waved her stick at me in a threatening manner and then went back to her seat, glaring. We kept swinging, and the laughter continued. My babies got a chance to be kids and to have fun that day, but nothing is without hurdles here in India.

My kids are loved now. I love them as I’ve never loved anyone else. They get warm baths at night. We dress them in their pajamas, pray together, and cuddle in bed. They are available for adoption, and I pray for mothers and fathers for them—parents who can give them more than I can, and who live in a country where they'll be accepted.

Every night we read the story “I Love You Through and Through.” I know it by heart now and the kids laugh when it comes to the part where we pretend to eat their fingers and toes. They fall asleep in our bedroom, where we cuddle with all the beds pushed together, and they wake up safe in our arms. My kids may not have the equipment they need, or the ideal therapies, or even the ability to go to school, but for the first time in their lives, they are loved in a family. We are working on everything else, but I am so grateful for where they are now.

Please read more about my life as a mama to my kids at my blog One Tiny Starfish.

You can sponsor a child at Sarah's Covenant Homes.

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