Hello,
This is Owen, Beth's son. Follow my mom's blog please.
Hello,
This is Owen's mum, Beth! We are pretty excited about the "bionic pancreas" and wish the trials would be expedited. Patience Prudence.
Monday, 16 June 2014
Tuesday, 3 June 2014
Gardening (and life pro) Tip: To encourage healthy growth, sometimes you must lift the manure from the tender shoot struggling into daylight.
I feel pretty wrung-out after more than a year of wrangling with inflexible, institutionalized-bullying systems and some of their minions. We have wonderful supporters within those systems. The fact is we advocate and advocate for physical and mental illness and we get such a subjective, varied response that once again we are made aware of how vulnerable all but the "strong" are in the schools. And rather than making right the wrongs that have been incurred around these issues, we are dogged for notes, notes and more notes and reminded incessantly by letter and robo calls from the high school that we need to improve attendance. Sigh. You know, the thought had never occurred, we haven't seen our daughter struggling to go to school despite great intellectual potential and thought to discuss the issue with her. The form letters and daily form call, one size fits all, just hurts the families of ill teens and children - keeps those wounds open as their peers and friends carry forward in the usual way. I am pretty sure we can do better than this, particularly if the statistics are accurate and 20% of us are mentally ill (all Canadians have been touched by it through family, etc.) or another percentage of us have a chronic illness, etc.
On the one hand we provide a doctor's note (immediately upon request) that indicates illness and after prompt submission we receive a terse reply from one official stating that as the note did not indicate an inability to do the class work, so we must set up a schedule, blah, blah, blah, the note fairly screamed. I am so pissed off at this point my hyperbole is creeping back in. Then we receive a form letter from a teacher that is so cold, I need to use tongs to hold it - just an impersonal reminder to improve attendance, no mention of project-based work that could supplement the final exam as her other teacher provided without hesitation. My daughter is an A plus student and even if a student's marks were poor, she/he deserves more consideration than a rude form that does not acknowledge the illness. We can and should do better to honour sick students.
We are considering home schooling our son until September - not because that is what we absolutely think that is what we want or our son should have at this point - but because the UGDSB is so concerned about attendance issues despite mitigating circumstances, that if my son is home for health reasons, "THEY" are likely to show up at our door in SWAT uniforms and stick us in prison for life without parole because they lost the note that we provided in triplicate on yellow paper (not kidding, one of the forms "must" be printed on yellow paper) or because someone just didn't like the cut of our jib. Subjectivity is not an equitable premise from which to treat students and their families - one principal or school should not be a haven from the others. There is an underground subculture that naturally responds to oppression (inflexibility that does not reflect the natural course of real life results in pockets of humanity that fills the void) - and we are finding it in regard to mental illness and juvenile diabetes. Think how challenging it must be for the ones who don't have the resources to find the underground railroad for the archaic UGDSB protocol refugees.
Our son's principal "gets us" and all of the people who, like us, don't fit that one idealized student model that the system seems to be based upon. In choosing home schooling, if we go that route, we are insulated from insensitive, and frankly, actionable behaviour at the hands of some employees of the school board while we teach our son from home when he is feeling well and let him recover when he is ill. This will be a respite from the pressure - letting the seams out as it were, because until there is a cure for Type 1 diabetes or depression, we remain flexible while others are not.
- It is estimated that 10-20% of Canadian youth are affected by a mental illness or disorder – the single most disabling group of disorders worldwide. (www.cmha.ca › Media)
On the one hand we provide a doctor's note (immediately upon request) that indicates illness and after prompt submission we receive a terse reply from one official stating that as the note did not indicate an inability to do the class work, so we must set up a schedule, blah, blah, blah, the note fairly screamed. I am so pissed off at this point my hyperbole is creeping back in. Then we receive a form letter from a teacher that is so cold, I need to use tongs to hold it - just an impersonal reminder to improve attendance, no mention of project-based work that could supplement the final exam as her other teacher provided without hesitation. My daughter is an A plus student and even if a student's marks were poor, she/he deserves more consideration than a rude form that does not acknowledge the illness. We can and should do better to honour sick students.
We are considering home schooling our son until September - not because that is what we absolutely think that is what we want or our son should have at this point - but because the UGDSB is so concerned about attendance issues despite mitigating circumstances, that if my son is home for health reasons, "THEY" are likely to show up at our door in SWAT uniforms and stick us in prison for life without parole because they lost the note that we provided in triplicate on yellow paper (not kidding, one of the forms "must" be printed on yellow paper) or because someone just didn't like the cut of our jib. Subjectivity is not an equitable premise from which to treat students and their families - one principal or school should not be a haven from the others. There is an underground subculture that naturally responds to oppression (inflexibility that does not reflect the natural course of real life results in pockets of humanity that fills the void) - and we are finding it in regard to mental illness and juvenile diabetes. Think how challenging it must be for the ones who don't have the resources to find the underground railroad for the archaic UGDSB protocol refugees.
Our son's principal "gets us" and all of the people who, like us, don't fit that one idealized student model that the system seems to be based upon. In choosing home schooling, if we go that route, we are insulated from insensitive, and frankly, actionable behaviour at the hands of some employees of the school board while we teach our son from home when he is feeling well and let him recover when he is ill. This will be a respite from the pressure - letting the seams out as it were, because until there is a cure for Type 1 diabetes or depression, we remain flexible while others are not.
Wednesday, 23 April 2014
A sample of cross-cultural approaches to mental health policy in education and employment.
The Organisation for Economic Co-operation and Development (OECD) has researched employment policies, mental health and how various societies manage the integration of education and employment for their citizens (http://www.oecd.org/health/theoecdmentalhealthandworkproject.htm). Below, I include quoted excerpts that summarize their recommendations for Belgium, Denmark, Norway, Sweden, Switzerland, United Kingdom; and later in 2014, Australia, Austria, Netherlands will follow.
The OECD recommends to Belgium to:
The OECD recommends that Denmark:
Assure that ongoing social and labour market reforms, such as the
reform of the scheme of subsidised flexjobs, will deliver also for
people with a mental disorder.
Minimise school dropout and improve the transition to secondary
education and employment for adolescents with a mental illness.
Tackle mental ill-health in the workplace with a focus on people
facing performance problems but not yet taking relevant sick leave.
Aim to identify widespread mental health problems among clients
of municipal job centres, and address these problems with a range of
both health and targeted employment interventions.
Improve work-capacity assessments for disability benefit eligibility
including an identification of needs, especially for claimants with a
mental disorder, and introduce periodic reassessments.
Develop employment-oriented mental health care, and experiment
with ways to integrate health and employment services.
MENTAL HEALTH AND WORK: DENMARK © OECD 2013
The OECD recommends to Norway to:
Take action to avoid sickness absence of workers with mental
health problems as much as possible and instead solve the
problems at the workplace.
• Expand the Employment Support Centres of NAV to fill the wide
gap between general prevention and rehabilitation by introducing
and expanding early intervention measures.
• Stop the fragmentation of services in mental health care and
rehabilitation and the disconnection between treating physicians
and NAV by developing integrated support models.
• Minimise school dropout and improve the transition to employment
by defining clear responsibilities for on-going individual follow-up
for students at risk.
MENTAL HEALTH AND WORK: NORWAY © OECD 2013
The OECD recommends to Sweden to:
Increase resources available for school health services to identify
and provide support to pupils with mental health problems early on.
Provide adequate support to early school leavers and NEET with
mental health problems to promote their transition into higher
education and employment.
Reform the disability benefit scheme for those aged 19-29 who tend
to access the system with a mental illness, with much greater focus
on active measures to avoid an early exit from the labour market.
Provide greater support to small employers to retain workers with
mental health problems; to prevent them from moving onto sickness
benefits; and to reintegrate sick employees.
Ensure that adequate employment and health services are given to
sickness benefit recipients with mental health problems at an early
stage of the sickness spell to facilitate their rapid return to work.
Develop employment-oriented mental health care and experiment
with ways to integrate health and employment services.
MENTAL HEALTH AND WORK: SWEDEN © OECD 2013
The OECD recommends that Swiss policy makers:
• Strengthen the prevention and management of sickness absences at
the workplace in order to foster greater job retention.
• Move the disability benefit system closer to the work sphere with a
focus on the role of employers and workplace-oriented early
interventions.
• Enhance the capacity of employment services and social welfare
offices to deal with the frequent mental health problems of their
clients.
• Broaden inter-institutional co-operation by including the health
system as an equal partner, building networks with employers and
strengthening the financial incentives to co-operate for the main
actors.
• Assure that the well-resourced mental health system delivers better
employment outcomes also by promoting a better allocation of
resources toward adequate doctor training and treatment practice
with an employment focus.
• Place a greater emphasis of the education policy on ensuring that
students with mental health problems do not leave the education
system early as a result of school drop-out or through the take-up
of a disability benefit.
MENTAL HEALTH AND WORK: SWITZERLAND © OECD 2014
The OECD recommends that policy makers in the United Kingdom:
• Assure that reforms underway to improve intervention in the early
phase of a sickness spell, in order to avoid the transition from
sickness into disability benefit (Employment and Support
Allowance), are implemented effectively.
• Increase the attention to mental health and its impact on
employability and work capacity in all parts of the welfare system,
including Employment Support Allowance, Jobseeker’s Allowance
and the new Universal Credit.
• Further refine the outcome payments for employment service
providers to promote better employment outcomes for the most
disadvantaged customers.
• Invest in active labour market programmes more generally to be
able to provide adequate support for clients with mental health
problems.
• Build on recently improved integration of health and employment
services to make sure that successful pilot approaches are widely
available.
• Further expand access to psychological therapies for those with a
common mental disorder and boost mental-health knowledge of
general practitioners who play a key role in the UK health and
benefit system.
MENTAL HEALTH AND WORK: UNITED KINGDOM © OECD 2014
The OECD recommends to Belgium to:
• Further integrate children and students with special needs in
mainstream education and improve the transition to employment.
• Rigorously implement and monitor employers’ obligations with
respect to psychosocial problems and increase sanctions for noncompliance.
• Systematically involve occupational health specialists in the
retention and reintegration of sick employees.
• Systematise the co-operation between mutualities and public
employment services.
• Develop employment-oriented mental health care and experiment
with ways to integrate health and employment services.
MENTAL HEALTH AND WORK: BELGIUM © OECD 2013
Danish policy makers see the need for stronger action to
prevent people from dropping out of the labour market due to mental illness
and help those with a mental disorder to find sustainable jobs. Denmark is in
a good position to tackle the challenges of mental ill-health, as it can build
upon a number of system strengths. These include, for example, a good
municipal structure for following up on youth at risk as well as for providing
employment services to everyone in need of help. It also has an accessible
health system that widely reimburses psychological therapies. Nevertheless,
change is needed in order to improve the situation significantly. Changes
should include a better implementation of existing regulations and more
generally a stronger focus on mental health in current health, social and
labour market policies and ongoing welfare reforms.
Assure that ongoing social and labour market reforms, such as the
reform of the scheme of subsidised flexjobs, will deliver also for
people with a mental disorder.
Minimise school dropout and improve the transition to secondary
education and employment for adolescents with a mental illness.
Tackle mental ill-health in the workplace with a focus on people
facing performance problems but not yet taking relevant sick leave.
Aim to identify widespread mental health problems among clients
of municipal job centres, and address these problems with a range of
both health and targeted employment interventions.
Improve work-capacity assessments for disability benefit eligibility
including an identification of needs, especially for claimants with a
mental disorder, and introduce periodic reassessments.
Develop employment-oriented mental health care, and experiment
with ways to integrate health and employment services.
MENTAL HEALTH AND WORK: DENMARK © OECD 2013
The OECD recommends to Norway to:
Take action to avoid sickness absence of workers with mental
health problems as much as possible and instead solve the
problems at the workplace.
• Expand the Employment Support Centres of NAV to fill the wide
gap between general prevention and rehabilitation by introducing
and expanding early intervention measures.
• Stop the fragmentation of services in mental health care and
rehabilitation and the disconnection between treating physicians
and NAV by developing integrated support models.
• Minimise school dropout and improve the transition to employment
by defining clear responsibilities for on-going individual follow-up
for students at risk.
MENTAL HEALTH AND WORK: NORWAY © OECD 2013
The OECD recommends to Sweden to:
Increase resources available for school health services to identify
and provide support to pupils with mental health problems early on.
Provide adequate support to early school leavers and NEET with
mental health problems to promote their transition into higher
education and employment.
Reform the disability benefit scheme for those aged 19-29 who tend
to access the system with a mental illness, with much greater focus
on active measures to avoid an early exit from the labour market.
Provide greater support to small employers to retain workers with
mental health problems; to prevent them from moving onto sickness
benefits; and to reintegrate sick employees.
Ensure that adequate employment and health services are given to
sickness benefit recipients with mental health problems at an early
stage of the sickness spell to facilitate their rapid return to work.
Develop employment-oriented mental health care and experiment
with ways to integrate health and employment services.
MENTAL HEALTH AND WORK: SWEDEN © OECD 2013
The OECD recommends that Swiss policy makers:
• Strengthen the prevention and management of sickness absences at
the workplace in order to foster greater job retention.
• Move the disability benefit system closer to the work sphere with a
focus on the role of employers and workplace-oriented early
interventions.
• Enhance the capacity of employment services and social welfare
offices to deal with the frequent mental health problems of their
clients.
• Broaden inter-institutional co-operation by including the health
system as an equal partner, building networks with employers and
strengthening the financial incentives to co-operate for the main
actors.
• Assure that the well-resourced mental health system delivers better
employment outcomes also by promoting a better allocation of
resources toward adequate doctor training and treatment practice
with an employment focus.
• Place a greater emphasis of the education policy on ensuring that
students with mental health problems do not leave the education
system early as a result of school drop-out or through the take-up
of a disability benefit.
MENTAL HEALTH AND WORK: SWITZERLAND © OECD 2014
The OECD recommends that policy makers in the United Kingdom:
• Assure that reforms underway to improve intervention in the early
phase of a sickness spell, in order to avoid the transition from
sickness into disability benefit (Employment and Support
Allowance), are implemented effectively.
• Increase the attention to mental health and its impact on
employability and work capacity in all parts of the welfare system,
including Employment Support Allowance, Jobseeker’s Allowance
and the new Universal Credit.
• Further refine the outcome payments for employment service
providers to promote better employment outcomes for the most
disadvantaged customers.
• Invest in active labour market programmes more generally to be
able to provide adequate support for clients with mental health
problems.
• Build on recently improved integration of health and employment
services to make sure that successful pilot approaches are widely
available.
• Further expand access to psychological therapies for those with a
common mental disorder and boost mental-health knowledge of
general practitioners who play a key role in the UK health and
benefit system.
MENTAL HEALTH AND WORK: UNITED KINGDOM © OECD 2014
Tuesday, 22 April 2014
T1D Documentary Proposal
I wonder if anybody would be interested in collaborating with me on a documentary that illustrates the challenges that families with children living with chronic and mental illnesses face hourly, daily, weekly, monthly, yearly. Before my son was diagnosed with juvenile diabetes, I had no awareness of the lifestyle that the immune disorder demanded - or the challenges that doing simple things like attending school or having the flu would prove to be.
Similarly, I see how the life of my daughter (who is now thriving as a teen with a mental illness) is made more difficult by an archaic education system that still does not recognize depression and anxiety - and the roller coaster ride of finding the right medication - as reasons for missing school. So many kids are dealing with their health problems on top of the usual angst associated with school - fitting in socially, getting good grades, poor teachers - and that is not even considering the junk they may have to deal with at home - which could include dysfunction and abuse.
It is important to educate people about the daily lives of kids who have so much to think about. Otherwise, without anybody else sharing the burden that children carry, they can only survive and not thrive. I was inspired by the March 9th, 2014 CBC article (http://www.cbc.ca/news/world/psychiatric-community-care-belgian-town-sets-gold-standard-1.2557698) that discussed Geel, a Flemish town in Belgium where the mentally ill have been fostered by families, sometimes multi-generations, as a social fact of life for 700 years. The Toronto Star has also had a series of articles devoted to the triumphs and troubles faced by the mentally ill that I have found informative and poignant. We make it very difficult for people living with chronic and mental illnesses to work part-time while receiving subsidized income - we cut them off at the legs by clawing back earnings despite the hardships endured while working. There is no dignity in this punitive and inflexible system. We can do better as Canadians - we know through cross-cultural analyses that other nations have more success with their societal approach to illness.
Similarly, I see how the life of my daughter (who is now thriving as a teen with a mental illness) is made more difficult by an archaic education system that still does not recognize depression and anxiety - and the roller coaster ride of finding the right medication - as reasons for missing school. So many kids are dealing with their health problems on top of the usual angst associated with school - fitting in socially, getting good grades, poor teachers - and that is not even considering the junk they may have to deal with at home - which could include dysfunction and abuse.
It is important to educate people about the daily lives of kids who have so much to think about. Otherwise, without anybody else sharing the burden that children carry, they can only survive and not thrive. I was inspired by the March 9th, 2014 CBC article (http://www.cbc.ca/news/world/psychiatric-community-care-belgian-town-sets-gold-standard-1.2557698) that discussed Geel, a Flemish town in Belgium where the mentally ill have been fostered by families, sometimes multi-generations, as a social fact of life for 700 years. The Toronto Star has also had a series of articles devoted to the triumphs and troubles faced by the mentally ill that I have found informative and poignant. We make it very difficult for people living with chronic and mental illnesses to work part-time while receiving subsidized income - we cut them off at the legs by clawing back earnings despite the hardships endured while working. There is no dignity in this punitive and inflexible system. We can do better as Canadians - we know through cross-cultural analyses that other nations have more success with their societal approach to illness.
Friday, 11 April 2014
Easy Peasy Lemon Squeezy
Well, the week is over and another full day at school for Owen - wonderful. We are all signed-up for pizza and sub days, book orders, diabetes training for the staff, volunteering, making quilts, going to see a dam, using ipads, making new friends, playing with good friends, etc. He is so excited by all of it. It really highlights how important the right atmosphere, the right fit, at school can make or break the experience. I am also only beginning to realize how damaging this past year and a half has been for Owen and for us with so many negative forces acting against us.
This beautiful weather today has helped so much verdant life pop up and burst with green and purple. Time to make some food!
This beautiful weather today has helped so much verdant life pop up and burst with green and purple. Time to make some food!
Thursday, 10 April 2014
Old friends, new friends, forgiveness, chess, M&Ms and the whole day at school!
Owen spent the entire day at school today - he forgave a bully and had the opportunity to play chess with his friends and the principal at lunch. It was an amazing day and we are going to celebrate with some pizza and one of Emily's closest friends tonight.
I have gotten away from the idea of posting about food, but I hope to include some recipes in the future. I recently made a sausage risotto; savoury caramelised red onion jam and extra old white cheddar whole wheat bread with sesame seeds; black sesame seed and cheese bread; budae jjigae 부대찌게with roasted ham rather than Spam ... Yummy and one of my favourite Korean dishes. We went to a Korean market in Kitchener recently and picked up some great ingredients. It amazes me that in two years Korea became my home and I miss it so much. Our friend Sanghyo ryu from Yeonggwang, S.K., who I call 동생, for little brother and he calls me 누나 (big sister) and Steve 형님 (brother), recently sent photos of his new son born in February. We went to The Bookshelf to buy him a favourite book of ours, Goodnight Moon, made a card and sent the package off in February. I am so happy that it arrived and just like we did with our two, Hyun min will be read to sleep with the soothing, comforting words and images of a venerable English bedtime story.
I have gotten away from the idea of posting about food, but I hope to include some recipes in the future. I recently made a sausage risotto; savoury caramelised red onion jam and extra old white cheddar whole wheat bread with sesame seeds; black sesame seed and cheese bread; budae jjigae 부대찌게with roasted ham rather than Spam ... Yummy and one of my favourite Korean dishes. We went to a Korean market in Kitchener recently and picked up some great ingredients. It amazes me that in two years Korea became my home and I miss it so much. Our friend Sanghyo ryu from Yeonggwang, S.K., who I call 동생, for little brother and he calls me 누나 (big sister) and Steve 형님 (brother), recently sent photos of his new son born in February. We went to The Bookshelf to buy him a favourite book of ours, Goodnight Moon, made a card and sent the package off in February. I am so happy that it arrived and just like we did with our two, Hyun min will be read to sleep with the soothing, comforting words and images of a venerable English bedtime story.
Don't Let The Man Get You Down
One of my favourite movies to watch with our kids is School of Rock with Jack Black, Joan Cusack and others. I think I identify with his character and the prevailing message throughout the movie is to embrace the unique person you are, each of us. I guess I am a little haunted by our negative UGDSB and CMHA experiences of the past year and well before that if I am being honest here (and I am!). I had some pretty disturbing nightmares in the wee hours this morning. They reflected my frustration, anxiety and feelings of helplessness in protecting my kids from tunnel vision, narrow thinking and just plain mean spiritedness at the hands of The Man (insensitive institutions at large). It is easy to feel intimidated when phone calls, letters, emails all tell you that you despite everything you know is right, you must do this THING, this THING that if you do not do it, will result in this OTHER BAD THING. Ach.
Wednesday, 9 April 2014
Empathy is alive and well in Guelph!
A great step forward today. Owen has begun attending the school where his friends attend and where his sister attended. I used to wheel Owen there daily in his run-behind stroller to deliver Emily to school and then proceed to huff and puff up and down the steep hills in that neighbourhood for my daily exercise. The school admin remembers our daughter and I! Feels like going home. I don't expect people to always agree with me, but I have to say that after a year of feeling like we were speaking into a void, the principal at Owen's new school has already connected with us in a way that feels right and very human. I hardly know what to do with myself. I will administer Owen's insulin at lunch daily, but my morning and afternoon until the end of the school day is mine to work. I think I will take each day as it comes for the next bit, give myself the space I need to percolate some ideas and thoughts - avoid the UGDSB battleground that has been my life since Owen's T1D diagnosis and our daughter's struggles with depression. Sadly, I did find a message on our machine after returning from Owen's school this morning and it was a person from CMHA asking how Owen was doing. I am not going to concern myself with that right now. For the moment, I am enjoying the peace.
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