Friday, March 30, 2012

One child, 10 conditions, no diagnosis

One child, 10 conditions, no diagnosis
By Julie Drury

Our daughter Kate (above) had 10 medical conditions but no diagnosis. Episodes of repeated vomiting, pain and racing heart rate sent us back to the emergency room -- over and over and over again.

Imagine arriving for the 10th time, your toddler presenting with the same unexplained symptoms. Armed with a binder that contains your medical journal, a list of countless specialists and ever-changing medication schedules, you tell your story to the triage nurse, then a resident, then a doctor. After hours of waiting, you move to an inpatient ward, where you repeat your child's complicated history again – to a student, a nurse, a resident, an attending physician and many specialists.

No one knows your child and no one knows what's wrong. You're afraid, frustrated and exhausted.

This was life for our family.

At nine months, Kate became acutely ill with episodes of cyclical vomiting, pain, lethargy, high heart rate, low oxygen saturation and severe anemia. Our family doctor seemed overwhelmed with her symptoms and began treating her for reflux. His advice was to take her to emergency at the Children's Hospital of Eastern Ontario (CHEO) in hopes that they would identify the underlying problem. We rushed there more than 20 times in the first 2.5 years of Kate’s life and had many hospital admissions.

In addition to serious medical problems, Kate was losing her hearing during this time and was eventually diagnosed with global developmental delay. To address this, we added rehab professionals to our long list of specialists: occupational, speech and physical therapists, auditory-verbal therapists, psychologists, a developmental pediatrician, integration support workers, school board advisors and community care access staff. On a daily basis, we juggled therapy, clinic visits, tests and chronic illness. Every six weeks or so, Kate became seriously ill and we'd rush to emergency.

Kate’s severe episodes often happened in the evening and escalated throughout the night. In the early days, my husband and I would take Kate to the hospital. We needed two sets of arms to cuddle and comfort her. We needed two sets of ears to listen to the doctors and understand how they were going to treat her. Over time we settled into a routine of me taking the lead and my husband taking the night shift during hospitalizations. Every hospital trip involved asking friends and neighbours to care for our older son.

With no diagnosis and no doctor overseeing Kate's case, I became Kate's medical advocate and coordinator. I tried to ensure that all of her specialists were up to date on the approaches pursued by each. I kept a detailed journal and concise medical summary because her enormous medical chart wasn't always available during clinic visits. And it was too long to be read and absorbed during an emergency room visit or hospitalization.

After two life-threatening events, I worked with a discharge planning coordinator to pull together case-conference meetings about Kate. We wanted better coordination of care, and a solid plan to support Kate and our family when we showed up in emergency.

I was taken aback when our simple request for a triage letter outlining Kate's conditions and protocol for care was met with reluctance. None of her specialists wanted to take the lead. Each felt uncomfortable being the point person for a child with a complexity of medical issues.

We couldn’t keep this up.

Then, during a long admission in February 2010, we heard about a new pilot program at CHEO. The Coordination of Complex Care Program (CCCP) aims to improve care for children who are medically complex and fragile. The team supporting a child includes a 'most-responsible physician,' a nurse and family-care coordinator, and a nurse practitioner. These professionals ensure that information is shared and coordinated among specialists, the community pediatrician and community organizations (integrated support services, community care, therapists, schools, social worker).

A single point of contact for hospital admissions meant that someone finally 'knew' Kate. For us, that someone was Dr. Natalie Major. Dr. Major knew Kate's medical history, had a protocol in place to treat her, and could adjust it as necessary. We weren't constantly repeating our story and trying to educate different doctors.

The CCCP has changed our lives and, most importantly, changed Kate's life. Shortly after being admitted to the program, a major health crisis due to poor medical coordination was averted. It’s been two years since we joined the program, and we’ve seen many benefits.

We make less emergency trips. We have a medical protocol in place to ensure Kate’s efficient and effective care. We have a triage letter that explains her condition and outlines how she’s to be treated. There is better communication and collaboration between her specialists. Because procedures are coordinated, Kate has fewer pokes for bloodwork. If she needs a general anesthetic, Dr. Major leads a full case conference to ensure all aspects of her complicated condition are considered.

Our family -- once incredibly alone and burdened -- now copes with solid medical support.

The reality is that children like Kate, who are medically fragile and complex, are living longer. While they make up 12 to 18 per cent of the population, their care produces up to 80 per cent of the health-care bill. They have chronic conditions and are usually dependent on technology. They spend a lot of time in emergency rooms and hospitals. Their health can be improved – and pressures on the health-care system reduced – by putting programs like CCCP in place.

I’m happy to say that Kate’s health has stabilized over the last 12 to 18 months. She continues to have her acute episodes (26 to date). But because of Dr. Major’s early intervention, the episodes are handled efficiently and quickly. This minimizes our trips to emergency and the need to hospitalize Kate. Since joining the program, Kate’s underlying diagnosis has been confirmed. She has a rare form of Mitochondrial disease.

Families who can’t access programs like CCCP are suffering. They shouldn’t have to experience fear, frustration, burn out and financial ruin. Their children shouldn’t be at risk for medical error or omission because they are so complex. They shouldn’t have to consider moving to another part of the country to get the services they need.

Innovative programs like CCCP demonstrate that there is a way to keep these children out of hospital. But in Canada, these programs are few and far between. Our program – a two-year pilot – now has one year of project funding. We will continue to fight for funding and recognition of its importance. Medically-complex children – who weren’t part of our community only a few short years ago – deserve this essential care.

Learn more about Kate Drury and her family at Caring Bridge.

Thursday, March 29, 2012

Three children, no voice

Tuesday, March 27, 2012

Links

Monday, March 26, 2012

Party 1

Thursday, March 22, 2012

I say 'gobbledygook!'












I know nothing about philosophy in the academic sense.

And, after reading this paper published in the Journal of Medical Ethics, I have no interest in knowing anything about it.

In After-birth abortion: Why should the baby live? a philosopher and an ethicist argue that killing newborns – before they have neurological self-awareness – is ethical for children with disabilities, because it's assumed they would be an unbearable burden to their families and society. They also argue that infanticide is ethical for a healthy baby with no disabilities, if that baby might compromise the psychological, social or economic wellbeing of parents, siblings and society.

In a nutshell, Alberto Giubilini and Francesca Minerva argue that if a newborn is disabled, not wanted by his or her mother or too expensive, it's ethical for doctors to kill the baby.

In their article, the academics attribute the right to life only to individuals who can appreciate their existence and have ‘aims’ or dreams for the future, so that depriving the person of that life would be experienced as a loss. If individuals can’t value their life and plan for the future, because their brains are in the newborn state, or because they have a disability, the philosophers categorize them as non-persons who would not be harmed if killed.

“Merely being human is not in itself a reason for ascribing someone a right to life,” is how they so eloquently put it.

The philosopher/ethicist duo say that killing newborns who have severe mental and/or physical disabilities is ethical if the parents would have aborted the child in advance – if only they had the knowledge.

An example given is Treacher Collins syndrome, a rare genetic condition that Giubilini and Minerva describe as causing ‘facial deformity’ and physiological ‘failures,’ including potentially life-threatening respiratory problems.

Hmmmmmm. I thought. I remembered the name Treacher Collins because when my son was a toddler we visited an ear-nose-and-throat specialist at a world-renowned children's hospital who mentioned the syndrome in passing, noting that some of the facial differences were similar to those seen in my son. In fact, when telling us about Treacher Collins, the ENT said that Sylvester Stallone had the condition, and that while people with Treacher Collins had facial differences that required reconstructive surgery, they were intact intellectually and led full lives.

That doesn't seem to line up with the journal article's description of 'physiological failures' and life-threatening respiratory problems.

I did a quick search online and came across this blog by a young woman with Treacher Collins who is a physician in internal medicine, pediatrics and sleep medicine. She is also married and from the looks of the blog, loves her life.

Guibilini and Minerva note that people with Treacher Collins have typical intelligence so they would be aware of how ‘different’ they are and of all of their problems (seeming to imply that this would make death a better option).

They also tell us that 'many parents' would choose to have an abortion if they found out their child had Treacher Collins prenatally (not sure how they produce evidence of this claim, since it is not a standard syndrome tested for).

It seems to me that our philosopher and ethicist were looking for a syndrome that's not part of the regular prenatal testing battery to give an example of a situation in which parents don't have the option of aborting because they don't know of the diagnosis. Unfortunately, they didn't take much time to actually research Treacher Collins or speak to people living with it.

They lament the fact that in 18 registeries in Europe between 2005 and 2009, 'only' 64 per cent of ‘Down-syndrome cases’ (remember, we’re not talking people here), were detected prenatally, and that 1,700 babies with Down syndrome were born to parents who learned of the diagnosis at birth. For some reason, the philosophers don’t make the leap of understanding to consider that perhaps the parents of those 1,700 babies chose not to have prenatal testing because they decided to carry a child to term whether the child had Down syndrome or not.

They end this section with this bizarre statement: “Once these children are born, there is no choice for the parents but to keep the child, which sometimes is exactly what they would not have done if the disease had been diagnosed before birth.”

In this statement I can hear my 13-year-old son whining "It's not fair," and myself responding, "There are lots of things in life that aren't fair. But that's life."

Hello! Who said control over our circumstances is attainable in this life? Coming to grips with our vulnerability is part of the growing-up process which seems to have been lost on these academics. How would these philosophers ‘solve’ the problem of our mortality? Because I am sure there are many people who might not choose to die either.

But back to the article.

Giubilini and Minerva note that euthanasia in infants has been proposed by philosophers for children with severe abnormalities who meet two conditions: their lives are not worth living (they don’t define this – although we can assume from earlier comments that they equate an unworthy life with intellectual OR physical impairment that limits a person’s ability to envision or achieve their aims or dreams). The other condition is that they are experiencing unbearable suffering.

They tell us it is reasonable to predict that living with a severe condition is against the best interest of the newborn. They don’t say on what they base this prediction, but it’s interesting to note that while economists analyze quality-of-life years using models that assume low quality of life for people with chronic illness and disability, large-scale studies of self-reported satisfaction in people with disabilities paint a different picture.

Dr. Chris Feudtner, a pediatrician and director of the department of medical ethics at the Children's Hospital of Philadelphia went to great pains to describe this in a talk he gave at the Montreal Children's Hospital last year.

But our philosophers were not listening.

The article is full of contradictions -- on the one hand mentioning studies that find people with severe disabilities are happy, on the other, creating an image of the same people suffering unbearably.

Which one is it?

 They argue that the interests of ‘real people’ – who they define as parents, siblings and society at large – come before those of the newborn, who is a non-person, whether disabled or not. In fact, they suggest the term ‘after-birth abortion’ be used, rather than infanticide, because they compare the newborn to a fetus rather than a child.

“Actual people’s wellbeing could be threatened by the new (even if healthy) child requiring energy, money and care which the family might happen to be in short supply of,” they write.

And: “If a disease has not been detected during the pregnancy, if something went wrong during the delivery, or if economical, social or psychological circumstances change such that taking care of the offspring becomes an unbearable burden on someone, then people should be given the choice of not being forced to do something they can’t afford.” Since they believe the newborn does not yet exist as a person, they perceive the newborn as expendable.

Can't you hear that voice of my 13-year-old: "Why do I have to? It's not fair!"

Guibilini and Minerva even go so far as to say that a healthy newborn could ethically be killed rather than being placed for adoption because the idea of adoption might be more psychologically distressing to the mother.

The killing of disabled newborns would take place within a few days of the birth, they say, which they believe is enough time for the doctors to detect abnormalities. Further, in the case where a child is healthy, the killing can take place outside of any time threshhold as long as neurological assessments determine the child is not self-aware.

Minerva is quoted in the Daily Mail as saying: "This is not a proposal for law. This is pure academic discussion.”

The picture that runs with the piece shows a young woman (20-something?) who was formerly at Oxford and is now at the University of Melbourne.

Perhaps Minerva would like to consider the psychological 'harm' done to the wellbeing of 'real' families like ours who have to read her drivel? We can only hope that in the next few years she gains some life experience, is humbled and comes to her senses.

The editors of the Journal of Medical Ethics defended publishing the article in the name of intellectual freedom. I'm more interested in intellectual rigour.

Hope for school inclusion!

This is a brilliant NPR piece about an elementary school in Boston. Thirty per-cent of its student body has learning disabilities, and these kids learn alongside their peers. Watch the video!

Wednesday, March 21, 2012

Party boy















The other night Ben told me he wanted a birthday party (his birthday is Monday) and he wanted friends to come (two index fingers interlocking then trading places).

Given Ben's lack of friends, I was stumped.

"Well, I'm not sure who I would invite?" I said, trying to mentally manufacture some friends. "You're going to be going out with Sallyanne (worker) and Matt on Sunday. Let me think about it."

I turned to D'Arcy -- out of Ben's sight line -- and signed the word 'sad,' fingers drawing down my face like tears.

Ben hasn't made solid connections at his new school and he doesn't have contact with friends he had in elementary school. He does enjoy a couple of kids who are younger than him who sometimes go on group outings with his workers. In particular, there was a boy who petitioned to have him come on the recent Niagara Falls trip.

So I called Marjorie and asked if she thought this boy might be interested.

The next day, Ben was dropped off after school at Holland Bloorview for an orthotics appointment. He shares a cab to school with another boy he met when he was at Davisville/Metro School for the Deaf.

As I opened the door, Ben burst out, signing 'party,' (two letter V hands pointing down swaying back and forth like dancers). He then turned back and gestured at the boy, indicating he wanted him to come to the party.

I was speechless.

My son was going to show me who he wanted at his party. He was going to take matters into his own hands.

"You want Liam to come to your party?"

Vigorous nod.

I showed Liam the 'party' sign.

"What do you think about that, Liam? Do you think you might like to come to Ben's party?"

"Yes."

My chest hurt, but in a good way.

Ben is isolated at school because he has anxiety that manifests itself in compulsive skin picking and nose-blowing. I mentioned his wish for his party and I received this e-mail from a teacher last night.

"Today I asked a few of Ben's friends if they would like to attend Ben's birthday party. A few of the boys said yes! They asked for an invitation. Could you send an invitation to school with Ben tomorrow?...Today after discussing Ben's birthday party together with his friends, Ben came up and hugged me and a couple of others!"

The teacher wrote that when she mentioned the party, "Ben became alive!! He was so happy! Ben mentioned that you are serving pizza and cake! All got excited!"

We hadn't talked about the pizza and cake but I guess Ben felt they were solid standbys.

I then had a call from Marjorie to say that she had spoken to the boy who went to Niagara Falls with Ben and he was very excited about attending his party. And we thought about a couple of other boys who might be interested.

Today I was talking to a colleague about how we get so hung up on what constitutes a 'friend' -- particularly during childhood and the teen years. How is it that I can have friends who are significantly older or younger than me, but when it comes to children and teens we follow an unspoken edict that they must be 'the same age.'

It got me thinking that friends can come in many shapes and sizes, and friendship can be made richer by differences and diversity.

Bloom speaker: Redefining success


Tuesday, March 20, 2012

The upside of going downhill part 2!


















This piece is written by a member of Holland Bloorview's family advisory committee. Thank you to our FAC!

Before children, my husband and I took yearly ski vacations. We looked forward to getting away and enjoying the great outdoors. We travelled near and far. We flew and we drove. We’d go anywhere where there was snow. We lived for these vacations. We liked the sport, the sights, the food and the culture. We eventually took our ski vacations in Italy because it was cheaper to ski in Italy than to ski in Western Canada. What a great lifestyle.

Then we had kids. Screeching halt to skiing! Then we found out that one of our children had cerebral palsy. We thought our ski days were over.

Not so.

Our children’s nursery school teacher told me about a sit ski that allows people with physical disabilities to get out on the hills. Maybe one door for a certain type of vacation had closed, but another door had opened.

We went to the Toronto Ski and Snowboard show and asked reps from different resorts if they had an adapted ski program. We also asked if their childcare program could care for a child with disabilities. We had to think of logistics: Could we push a wheelchair from the parking lot, hotel or gondola to the daycare centre or wherever else we needed to go? Because a wheelchair doesn’t go through snow.

The responses from the resorts were varied. We concentrated on those with a good daycare program because we knew that our kids (then three years old) would not want to spend the whole day outdoors. We found out which places would offer us a one-on-one worker for our son. Some places you have to pay for the worker and some places you don’t.

The first year, we went to Silver Star in British Columbia. The kids enjoyed the daycare while my husband and I went skiing.

The next year, we went to Sun Peaks (also in BC) and our able-bodied daughter took a ski lesson while our son (the one with CP) was happy to be pulled around in the toboggan.

We found that we were treated better by the airlines when we flew with a wheelchair than when we were travelling with a stroller. In addition to boarding the plane first, they quite often had someone meet us at the gate when we arrived at our destination to offer assistance and escort us to the next gate or baggage claim area. You, of course, have to show the airline personnel how to release the wheelchair brakes! We also didn’t put a lot of “stuff” on the chair such as bags, knapsacks etc.

When we were at Sun Peaks it was at the same time as the Canadian Association for Disabled Skiing Festival and the Para-Alpine Canadian Championships. There were skiers from all over the world with different disabilities: blind skiers, sit skiers, amputees. It was inspirational to watch these athletes compete. They didn’t let their disability stop them from enjoying the sport so we tried to learn how we could do a family ski vacation too.

The Sun Peaks adapted ski program took our son out for a couple of runs in their sit ski. A sit ski sort of looks like the sled used for dog sledding. It was an exciting and emotional experience to ski with our son for the first time because what we thought wasn’t possible was possible after all! The adapted ski people were so kind to us that we decided to continue taking family ski vacations.

On the Internet we found out that Vermont has an adapted ski program -- Vermont Adaptive at Pico Mountain. We started going to Killington Mountain for March Break. The Friendly Penguin Daycare supplies us with a one-on-one worker for our son at no extra charge. The first worker happened to be a nurse. There was also a doctor who had recently graduated working in the daycare. They don’t guarantee this type of worker but all the workers we’ve had in the past three years have been excellent. The daycare said that they will take kids up to the age of 13 even though it's aimed at children who are five and under. They will supply a worker unless the child has behavioural issues. The parent has to give any necessary medications. Our son required diapering and help with feeding. We let the daycare know in advance what kind of help we needed and they did their best to accommodate us. The more information you share with the daycare, the better your child’s experience will be. Information such as what your child likes to eat or play will make for a better vacation for all.

Vermont Adaptive has a pediatric-size sit ski. Considering how much one of these things costs, I was amazed that they had one. Since we ski at Killington, we pay a small fee for Vermont Adaptive to bring the sit ski from Pico to Killington. We book the sit ski sessions in advance through Vermont Adaptive. It costs more if you book the same program through the resort.

Vermont Adaptive sends one or two volunteers to take our son out for as many runs as he'll tolerate. We learned that our son gets cold quickly in the sit ski, even though he normally runs hot, so we put on his regular cold weather gear and then a blanket on top of everything at the beginning of the session. You need to have two people to lift the sit ski onto the chair lift. So my husband helped the Vermont Adaptive volunteer lift the chair. I don’t know if the ski lift operator would get involved. Bring your own helmet unless you don’t mind your child wearing a loaner helmet worn by many other people.

In our son’s case, the sit ski is held from behind (like a dog sled) and is controlled by an able-bodied skier. We went down the regular ski runs so you have to watch out for other skiers.

Our son is verbal but not always able to express himself well. But we know that he enjoys skiing by the smile on his face. We hope that if you dream of a family ski vacation, you too will find a way to make it happen. Good luck and happy skiing!

Monday, March 19, 2012

Mom sells house to find right school
















“And did you get what you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself beloved on the earth.”
― Raymond Carver

My youngest son G is in Grade 3 and has Down syndrome. He goes to a local school, and this year has been The Year of the Mighty Struggle. So much so that we have placed our beloved home on the market, and are moving to a different neighbourhood for a school that we hope/trust/pray will be more inclusive. This got me thinking: what factors have to be in place to create an inclusive setting for kids with special needs? I think of inclusion as being an alignment of a number of indicators. By inclusion, I mean both social and academic inclusion in a regular school classroom.

I’d love to hear your thoughts. Since we’ve bombed out of our current school, I’m obviously no expert. The tricky part about this is that you can have all positive indicators one year, and then a principal or teacher changes the next year, and the deck of cards comes crashing down.

Indicators for Inclusion

Leadership: The principal affects the culture of the school, plain and simple. If the principal doesn’t believe in the education of all children, regardless of needs, from the bottom of his/her heart, this trickles down to the rest of the school.

Teacher: Teachers change year to year, so this factor has wide variation. Does the teacher believe my son can be successful? Or is she merely tolerating him until the end of the school year when she can be done with him? G was labelled by his teacher early in the school year. Once she’d pigeon-holed him, there didn’t seem to be anything he or we could do to change her mind.

I wonder if the era the teacher was educated in makes a difference? Today, universities teach ‘special needs’ to all their teachers, when in the past, you only learned about kids with differences if you were in the special-needs stream of training. However, G’s Grade 1 teacher was fabulous and she was close to retirement age! The key was she was willing to learn and grow as a teacher to support G’s success. So does age matter?

Teaching Assistant: This is the person who works most closely with my child, and is supposed to execute the adapted or modified curriculum for him. The TA has the greatest effect on my son because they spend the most amount of time with him. Is the TA stapled to his hip? Then social inclusion will not occur. Children do not socialize with children who have adults hanging around them all the time. All year, despite our protests, the TA sat in a little desk beside my son. He wasn’t left alone for one second because of ‘safety issues.’ How many class birthday party invites has G had? Zero. How does he spend his recesses? Playing with the TA, who is a 45-year-old woman.

Approach by TA makes a big difference too. Is she kind and compassionate, with common-sense? That will bode better for G than a TA who believes in continuous behaviour correction and punishment instead of positive reinforcement.

Children: I believe in the early years, children’s sense of humanity is shaped by their families. That kid who is mocking the kid in a wheelchair? He learned that from his parents. The boy who is especially kind to G in Grade 1? He has an uncle with Down syndrome. My hope for the world is that with successful inclusion, kids will grow up with other kids who are different, and with each passing generation, there will be enhanced kindness and tolerance. At this point, I feel very Pollyanna saying this. But I have to believe it is true.

Parents: Parents bring a boatload of personal values to the school. When an influential mom announces she would have terminated her pregnancy if she found out her baby had Down syndrome, your kid probably isn’t going to be invited to her house for a playdate. I’m curious as to why some parents ‘get’ G and others do not. I suspect it has to do with previous exposure to people with disabilities – whether a family member or through work – or simply possessing an open heart. With parents, I’ve learned the 20/60/20 rule works. Twenty per cent are friendly to G (make eye contact, say hello), 60 per cent are neutral (are not unfriendly, but are unsure how to approach him), and 20 per cent do not get it (no eye contact, and their children show general disrespect towards G). The last 20 per cent? Forget them. The first 20 per cent? Nurture those friendships – they are your champions and islands of hope. The 60 per cent? Smile and say hello to them in the hallways. Invite their kids to your kid’s birthday party. They might come over to your side.

Size of school: I used to think a tiny school was best, because all the kids would get to know G, and he would feel a sense of community. What I found out was that a tiny school means there are no options. If there’s only one class of each grade, and you get a non-inclusive teacher, your next 10 months are going to be misery. Tiny schools do not typically have many kids who have special needs. G has been the only child in the entire school for the past two years who has a TA. That means the school does not have to be inclusive; they merely have to tolerate my son. More kids with TAs? The culture of the school slowly tips into inclusion because they are forced to.

School diversity: We picked this school because it was culturally diverse. While I love the variety of cultures represented, being culturally inclusive does not translate into being receptive to special needs. Children who arrive at the school not knowing English are put into ESL classes to get them speaking English and assimilating as quickly as possible. The goal is to make everybody the same. G will never be the same as everybody else, no matter what they do. Truly embracing differences goes beyond the annual Multicultural Day.

Living in 'the hood:' G’s school is one neighbourhood over (Our local school is an academic excellence school – you can imagine how welcome G is there). We don’t live in the school’s neighbourhood, so we will forever be outsiders that way. I wonder if living right in the neighbourhood makes a difference for acceptance? You see folks at community league events, and are seen to have ownership in the neighbourhood. People get to know you not only as mom to the kid with Down syndrome, but as mom to other kids, and the mom that lives in the house down the street.

Neighbourhood demographics: I’ve heard that inclusion is more challenging in higher socio-economic neighbourhoods. Is this true? G went to a pre-school that had many moms who drove luxury vehicles. Social inclusion was challenging there too. But was this a factor?

My role: Finally, me. I recognize that I have a big role to make inclusion successful for G. In order to avoid the ‘us vs them’ mentality, I need to ingratiate myself very purposefully as one of ‘them.’ I need to belong to the school community so I’m valued (and hopefully, vicariously, G is valued too). My husband served as Treasurer on Parent Council for three years, to demonstrate our commitment to the school. I’m not sure that helped. I did extend out to the school community very heartily the first two years. I smiled to people in the halls, said ‘hello,’ volunteered at every opportunity, invited kids over for playdates, and invited the entire class to birthday parties. I said ‘thank you’ over and over to the principal, teacher and TAs. I remembered teacher’s birthdays and brought flowers, dropped off chocolates in the staff room at Valentine’s Day and brought back small gifts to the TA every time we travelled. But when the road got rocky last year, my perseverance waned. I shut down, and extended out only to people who were friendly to G. My mouth hurt from smiling so much, and my enthusiasm shrivelled up if playdate and birthday party invites weren’t reciprocated. I slowly gave up.

I hope I learned lessons from this school experience, and can give a fresh perspective to G’s new school in September. But I’m open to new ideas and inspiration to keep soldiering on! I wish I could sign my real name to this piece, but I can’t. Word on the Internet spreads quickly, and I need my son’s next three months at this school to be tolerable. I’m terrified of being flagged as a ‘difficult parent’ at the new school. But I’m tired and worn down. I feel the system has broken me, and most sadly, is starting to break my sweet, gentle son.

Kind BLOOM readers, what is your advice to create an inclusive setting for G at his next school? How do we nurture a school environment so he truly belongs?

Thursday, March 15, 2012

Of interest













Ashley treatment on the rise amid concerns from disability rights groups The Guardian reports that 12 families have carried out, or are in the process of undergoing, controversial medical procedures to limit the growth of their children with severe disabilities.

We all care: A glimpse of devotion in Cat Island, Bahamas The Four Walls of My Freedom author Donna Thomson shares a moving account of her meeting with a mother of two children with disabilities on a remote island.

Things adult medicine could learn from pediatrics "In adult surgery, it is not routine to promise that someone can be with you in the operating room till you go to sleep, or to have family members a standard part of recovery room care," writes Dr. Perri Klass in a New York Times blog. But that, says the doctor, is what patients -- adult or child -- need.

Parents of disabled children seek better documentation in restraint incidents Parents and disability advocates say Kansas schools don’t comply with current voluntary guidelines. Parents want to know when their child is being secluded or when teachers use restraint.

TASH responds to AASA position supporting restraint and seclusion

World 'split' over Olympic Games merger






















This BBC story reports that people from 19 countries are split on whether the Paralympics should be integrated into the Olympic Games, according to a poll of more than 10,000 people.

Some 47 per cent of those polled favour merging both Games, while 43 per cent want to keep the Paralympics separate.

A majority of people in six countries -- including China, the US and Australia, which won the largest gold medal counts in recent years -- opposed a merger.

Eight countries, including France, Chile and Egypt, wanted to merge the games, while the remaining five countries were split on the issue.

The question asked was: Should the Paralympics stay separate?

In Canada, 55 per cent of those polled said yes and 42 per cent said no.

Read the story and tell us what you think. I don't understand all of the implications, but some Paralympians quoted were against a merger.

Polling was conducted for the BBC World Service by GlobeScan.

Wednesday, March 14, 2012

Why do you read BLOOM?


















Nathalie Wendling, mom to Melanie and Tommy, sent me this lovely note:

BLOOM has helped me in ways that are difficult to explain. It has helped me understand myself better: my frustrations, my stress, my negativity, my jealousy, my worries, my exhaustion. Why we obsessively do all the things we do.

Reading about all these other parents with so much courage, strength and valuable advice helps me feel supported. As parents, we stress, looking for ways to improve our children's life with different therapies and new technology. Your blog has also taught me to stop and enjoy Melanie for who she is and her ways...I love Melanie's invisible friends and her pretend world. They make me laugh so much.

Thank you Louise...you have opened my eyes to a whole new exciting, fun-loving chapter. In this chapter we are going to enjoy Melanie as Melanie. I can't wait.

P.S. Melanie is not talking to Hello Kitty (see above). Apparently Hello Kitty said something mean to the Grinch.

From boy to boy-man

Sometimes I wish Ben had more age-typical interests. I wonder whether I should be 'pushing' him into common teen pursuits and 'discouraging' some of his favourite pasttimes.

Here's a pic of Ben at a comic book conference last week. He went with D'Arcy and had a blast. For the last three days he's been on a trip to Niagara Falls with Marjorie, Sallyanne and two other boys. They visited the falls, went to a bird sanctuary, played glow-in-the-dark bowling and golf, went on a ferris wheel, checked out the wax museum and enjoyed hotel life. A highlight at the bird kingdom was a free-flying aviary where Lorikeets landed on the boys' heads.

My boy is about to celebrate the birthday people associate with becoming a man. He will be 18. Yet he is the size of a child. And when we packed for his trip to Niagara Falls he asked if he could take his Halloween Town 2 DVD and I suggested we slip Jessie (the Toy Story character) into his bag. He wouldn't have asked to take Jessie, but I knew he'd like to find her when he opened his bag.

Unlike Ben's cousins and peers, his romantic interests at the moment centre on Jessie and other red-headed leads in Scooby Doo (Velma), The Secret World of Arietty (Arietty) and The Lorax (Audrey).

He loves to pull up Jessie's When somebody loved me song on the net and profess his love for her. And yet I hope for him that one day he will know some kind of romantic love, if that is something he desires.

Sometimes I feel the urge to censor what I write about Ben; I don't want to depict him as too child-like. Goodness, we all know how dangerous it is not to 'act your age!' There's always that social pull to 'fit in' -- whether it's about us or our kids. That's why I admire the way Making Peace With Autism author Susan Senator writes about her son Nat, a young man with autism who just moved into his own house. She writes about the whole person.

In a recent post, she notes that Nat, now 22 , is a man, who wants some kind of romantic love, or sex, albeit one who still "(sucks) his thumb, eyes wide and blue like a Disney elf." She can hold those two conflicting concepts of her son in her mind -- Nat as grown-up with adult desires and Nat who still needs to be protected, who lives in a group home. They are not mutually exclusive. Nor should they be. Aren't we all a hodge-podge of contradictions?

Susan links to a blog by Landon, a man with Asperger's, and this piece called They Don't Care How They Kill the Part of You That is Different:

They don't care how they kill the part of you that is different.
They'll train it out of you if they can.
They'll try to make you just like them
Indistinguishable from your peers
And maybe it will work.
And maybe it won't.
And if it doesn't, they'll try to get you to hide yourself away so no one has to think about you.
If you don't, they'll do it for you.
Or try to make you hate yourself so that you kill yourself...

And it made me think of how we try to change/reshape our children in the hopes of helping them to better fit in, be accepted, NOT stand apart, NOT be excluded. But at what cost? By stifling a part of their essence. By stamping out a part of them that is different but no less real, credible, valuable.

And I was glad I'd packed Jessie for the trip to Niagara Falls after all. My son's life is different -- and it always will be. But different and wonderful can coexist quite nicely in this life, if we only honour who a person is, not try to hide it.

Worry






















"When we move in jagged and hurried ways, it becomes impossible to see, recognize or drink deeply from any beauty, wonder, or grace in anything or anyone in our path.

Worry comes with an implicit promise that abiding in its company will ensure that our problem will be solved -- that we can somehow actually worry it away, fix it before anything bad happens. But worry is a false promise, a Trojan horse, a wolf in sheep's clothing. While neither healing nor repairing anything at all, it saturates us with stress and uses all our attention to project fear and weakness into every possible future disaster.

More importantly, worry steers us away from trusting in our own essential wholeness, wisdom and strength to be able to handle, in the moment, whatever we are given."

A Life of Being, Doing and Having Enough, Wayne Muller, 2010

Tuesday, March 13, 2012

How it feels on the inside














I was struck by the honesty of some recent posts about parenting children with complex developmental and/or medical needs.

6 things you don't know about a special needs parent, which was apparently inspired by

5 things you should know about a special needs family

How we do it: Part IX in a series

Unfair monsters

Sit back and enjoy the ride!














View 100 stunning photos and 13 videos that chronicle life at 12 Easter Seals camps in eight provinces across Canada. Twenty-five videographers and photographers and one editor put the multimedia project together as a PhotoSensitive exhibit. This one is of a camper on a zip line at Camp Squamish in British Columbia. Taken by photographer Andy Clark. Trust me -- Kids Who Can is breathtaking.

Letting go on BBC 1 tonight










Our British viewers should check out this new documentary on BBC1 tonight at 10:35 p.m. GMT.

Letting go follows Rosa Monckton and her daughter Domineca as Domineca leaves school and takes her first steps into a more adult world. And as Domenica prepares for the challenges of independent life, Rosa meets three other young people with learning disabilities, and discovers how they are managing their transition to greater independence.

The filmmaker -- Rosa Monckton -- has already produced a powerful series of films about the challenges of raising children with disabilities called When love is not enough.

Hope one of our British readers can fill us in on the new documentary airing tonight!

Thursday, March 8, 2012

Links














We often talk about the unhelpful things people say when our child receives a diagnosis. But what words help? Read How far do encouraging words go? at Adapting Creatively.

I liked this piece on Spread the word to end the word day by Erika at Flight of our Hummingbird: To me...Retarded means that a group of doctors shows up at your hospital bed and you know from their awkward stances, smile-less faces and pitying looks that your world is about to fall into little pieces but you try to hold it together as the list of grave medical terms penetrate the heavy silence in the room.

And I somehow fell upon this blog by the mother of Willa, a child with Costello syndrome who died as a toddler from cancer: Living in Invisible Cities. This is eye-opening writing: the images used to express the writer's experiences are powerful and original.

And a few other pieces:

A disabled adult child, and an always uncertain future

Disabled adults more likely to be victims of hate crime

The art of distraction

Parenting adults with autism

'Doctors should have the right to kill unwanted or disabled babies at birth as they are not a real person' claims former Oxford academic

Choosing to have a child with Down syndrome

Wednesday, March 7, 2012

Spread the word

In light of Spread the Word to End the Word day, Ellen Seidman at Love That Max has posted this video about her son Max.

Tuesday, March 6, 2012

Inflamed













You know how they say we hold emotions in our body?

This morning I was trying to resolve an issue in which I felt my son had been rendered powerless – not once, but twice. As I sat at my desk typing, I noticed my neck was sore. I ran my fingers under my chin and felt a large protrusion on the right side. A lymph node had suddenly ballooned out, inflamed. “Like a golf ball,” a colleague said. That’s odd, I thought. I don’t feel otherwise sick, and yet the swelling in my neck couldn’t have been a better metaphor for the bind I felt in not being able to effect justice for my son.

Friday, March 2, 2012

No more excuses!






















It hit me when I was speaking to researcher Anne Snowdon about her study on the social isolation of youth with developmental disabilities. She emphasized that the findings weren't just about the youth: "It's not just the child that has no or few peers," she said. "It has a ripple effect on families. The families report high levels of stress over years, the caregiving demands are high, and it's hard to engage in their communities. I question whether after a certain length of time parents don’t just give up or don't have time or energy to maintain friendships."

Now, I'm not personally concerned about friendships (maybe I should be!), but I am worried about finding ways to squeeze in stress reduction. I know it's a necessity for parents of kids with disabilities. But recently I've let it fall by the wayside.

When stressed, which is pretty much everyday, instead of going outside or working out at the club or calling a friend -- I have fallen into eating treats and drinking Americanos or hot chocolates. The more I don't exercise, and the more I eat, the more I don't want to exercise: I'm too tired. I can't fit into my clothes. I don't have time. What if that lady at the club asks me if I'm "chubbing out" like she did a few years ago?

So today at lunch I popped over to LuluLemon and picked up two funky tank tops and a sweat shirt (a size up from the last time). Now I have one less excuse.

How do you fit in exercise or other ways of reducing stress? Really? What do you do? When? Please share with us. I believe it's so important.

Thanks! Louise

Youth, families isolated, study finds















Over half of 166 youth with developmental disabilities in three Canadian cities reported having no friends or only one friend in Anne Snowdon’s recent study. Only 1 per cent spend an hour a day with a friend and 78 per cent don’t participate regularly in community programs. The study looked at families with older children – most were teens or young adults – who had autism, global delay, intellectual disability, cognitive and physical disabilities or Down syndrome. In addition to few friendships for youth, parents reported a ripple effect that left the family isolated. Snowdon has a PhD in nursing and is a professor at the University of Windsor's Odette School of Business. The research was led by The Kids Health Foundation, also known as The Sandbox Project. Holland Bloorview was one of several partners.

BLOOM: Why is this study of personal interest to you?
Anne Snowdon: I'm a nurse by training and very early in my career I started to work with families of children with special needs. The children had phenomenal challenges but incredible resilience and I thought it was important to advocate for them. Then my nephew was born with a severe disability and his entire life has been no end of challenge. So I've experienced this from the lens of what families go through, and also from the research and clinical lens.

BLOOM: Did the results surprise you?
Anne Snowdon: I have long known of varying degrees of isolation that these children and families face. As a researcher, I didn't go into the study with pre-conceived notions. What we found was that a significant gap in peer networking and relationships continues to be a challenge for these children. What's unusual about our families is that the children were an older age group. There has been significant progress in early-intervention programs for young children up to the age of six. There isn't nearly the progress in programs for older children and youth and these findings suggest we need to improve in that area. Often, our systems are not well integrated for children as they get older. For example, once children become 16, and sometimes even 14, pediatric hospitals don't consider them children, even though youth with developmental disabilities may be best served in a children's setting. We don't manage these older kids well.

BLOOM: Why are childhood friendships important?
Anne Snowdon: There are massive amounts of literature – in child psychology in particular – that look at the critical importance of peer relationships for child development. As children move into middle childhood their centrally important relationships shift from families to peers and the influence of peers is substantial. The way children – with and without disabilities – learn to form relationships in communities is very important to their long-term growth and development.

BLOOM: Why is it so hard for teens and young adults with disabilities to maintain friends?
Anne Snowdon: When I look at the qualitative responses of the parents and youth, two themes are very common. One is that social relationships are easy and well developed in younger ages. But as children move toward the preteen age group, the social relationships they had start to disappear. Parents would describe, over and over again, 'They just stopped calling.' One of my thoughts is that as children move toward the preteens, peer friendships become so influential – in terms of who they want to spend time with. Whether you make the team or not is a major issue and whether you're friends with the 'in crowd' is really important. And it may be that it's no longer cool to be friends with the kids with disabilities anymore. If a child can't engage easily or participate 'on the team' or in a peer group, the child falls off the radar.

The other thing is that community organizations need to help support peer networks for everyone – kids with and without disabilities. It's not okay to always be separated in a small group with other disabled children. And, do we make sure that programs aren't only physically accessible, but that we provide supports to fully integrate people? Do we have the resources to pay for assistants for a child who needs that to participate? When we don't support families to access these programs, it starts to seed the lack of friends, because if you're not out in the community, you can't form good social relationships.

BLOOM: I noticed that the youth you studied were more likely to have an intellectual disability. Do you think it’s harder for kids with developmental disabilities to make friends?
Anne Snowdon: I think I would have said that that played a role before I published. But then I was doing an interview with CBC and I was interviewed with a young gentleman with significant physical disability. He said: "Because of my disability being visible, I'm not treated the same way as my able-bodied peers. I’m not welcomed or engaged.’ He said these studies apply to him as much as anyone else. Generally there’s a hurdle to be crossed. In addition, it’s interesting that even the way social and health agencies are organized has segregated these two groups. There are agencies that tend to focus just on kids with physical disability or just on kids with cognitive disability. It would be interesting to do a study to see if their experiences are qualitatively similar or different.

BLOOM: I grew up on a dead-end street with 30 kids and we spent our days playing outside on the street. What is the impact of these children being largely friendless?
Anne Snowdon: I think there's a huge social and emotional impact of having no friends and that’s another study. It's so important to have engagement with many people in a community to learn the ways of the world and how to find your place in the world and when you remove that in the young and older teen age group, I think the impact is pervasive. You spoke about growing up on a street where 30 kids played. Imagine what it would be like to remove that network? You'd have to rely entirely on siblings and parents or maybe family and friends. And when I asked in this survey the degree to which family, friends and neighbours engage and support these families, the numbers are very low. It's not just the child that has no or few peers. It has a ripple effect on families. The families report high levels of stress over years, the caregiving demands are high, and it's hard to engage in their communities. I question whether after a certain length of time parents don’t just give up or don't have time or energy to maintain friendships.

BLOOM: I know it's a common experience in families of children with disabilities that extended family and friends don't step up to the plate.
Anne Snowdon: We asked about support from specific people. In support from children's grandparents, more than half gave a ranking of five or below on a scale of one to 10. Over 70 per cent said support from aunts and uncles was low, and 82 per cent said support from close relatives was low. Half of the participants gave neighbours a 1 out of 10 in terms of support. I think we've done a much better job at looking at ways to support families with younger children. We haven't made nearly the same progress with older children.

BLOOM: Why is there such a lack of support?
Anne Snowdon: I think our study generates far more questions than findings. I don't think in communities generally we spend much time helping each other learn how to be supportive. We tend to shy away from it. I think of my nephew having an incredible meltdown tantrum in the grocery store and throwing himself on the floor. You don't see people jumping in to say 'Oh, don't worry, my child did the same.' Instead, people tend to look away and walk away. In schools, I don't think we socialize children well enough so that they're in a position to be comfortable spending time with kids with special needs. I think we have a lot of work to do with able-bodied children and families to help them understand how they can be supportive and why it's so important.

BLOOM: What happens to these youth when they leave school?
Anne Snowdon: My nephew is 22 and he’s out of school. The school system creates a natural environment and my nephew looked forward to that every day. Without the school structure you have to create your own structure. My sister says parents are on their own. You either figure it out or your child sits at home.

BLOOM: How can we address the lack of social supports?
Anne Snowdon: There’s never one answer but a series of possibilities. I think at a higher, system level, health systems and social services and non-governmental organizations need to think more creatively about how they interface with each other so we don’t rely on the family to figure out how to build their son or daughter’s community structure.

One of the stories a parent shared with us was about a young woman in her 30s who was attending a private school. She’d been there since she was six. This was a well-educated and well-resourced family and they saw no other options for her. That to me is a red flag that the health and community and social services need to come together and look at seamless integration.

One mother said it requires a tremendous amount of energy to access programs or to create your own supports and some parents just don’t have that energy. They’re exhausted.

We need to work with groups in the community that are in silos to get them working together. We need to create more integrated, easily navigated systems to make sure children have the opportunities they need for social development. Families in the study identified the importance of social networks. One little girl said ‘When I’m online with my friends, people see me just like they see everyone else.’ She doesn’t have to overcome the biases, the judgment, and the stigma that come with face-to-face relationships. It was noted that at a certain age getting transportation was no longer provided so if you can’t afford transportation, you don’t go out anymore.

BLOOM: What are next steps for you?
Anne Snowdon: Our deliverables were to develop the tools that can mobilize and help communities build capacity for supporting social development. A simple one was developing integration-focused programs. How do we get these players together so that families can go to one or two places for what they need, and not 75? A number of players – Variety Village, Ability Online, Community Living and Special Olympics – have come to us and we’re working on ways they can share information with families and integrate their services more closely.

We need to develop social networking tools for families. There are lots of support programs for children with needs, but one requirement is that you can’t spend support money on computers. So for families who don’t have computers, imagine the further isolation they experience? A simply policy could address that.

Thursday, March 1, 2012

Kids Who Can






















Check out Kids Who Can, a black and white photo and film exhibit that captures daily life at 12 Canadian Easter Seals camps. This PhotoSensitive project, sponsored by Canon Canada Inc., runs from March 6 to 16 at the Allan Lambert Galleria, Brookfield Place, 181 Bay St. in Toronto.

“It’s the best camp in the world,” says Kyla Young, above, at Camp Tidnish in Nova Scotia. “I love it. I’m going to go until I’m too old. And when I’m too old I’m probably still going to show up.”

Photo by Scott Munn