Are There Limits To What We Will Do For Love in Caregiving?

A couple of days ago, I saw a play that made me ask the question, "Are there limits to what we will do for love in caregiving? If so, what are they for me? Are there limits to love in care receiving?"

The play was Kill Me Now by Brad Fraser. Billed as a black comedy, it's the story of a close family in which every person is flawed in particular ways. Joey, a young man with severe cerebral palsy, lives at home with his father Jake, whose promising writing career has been on hold since the birth of Joey. Jake's sister Twyla visits often, as does Joey's friend Rowdy. Rowdy has fetal alcohol spectrum disorder. Twyla drinks too much and finds intimacy painful. Jake locates solace in the arms of his married lover, Robyn. But as playwright Brad Fraser says in the program notes, "This is not a play about disability. It's a play about love and courage."  He went further in the pre-show discussion by explaining - "This is a play about saying goodbye to one's parents. It's about the limits each of us will go to for the sake of love."

As I watched the story unfold in the play, I found myself reflecting on how we choose to exceed limits in caring for those we love every day. As we set new limits, they remain intact only until the next time our loved one's needs change. This is true of our loved ones too, as Fraser sensitively portrayed in his play. They have limits of what they will give and receive just as we do. Their limits are equally challenged by the messy business of family life and everyone's changing needs.

The poignant end of the play in which father and son reverse their caring roles drove home to me how we are all compelled to constantly push the limits of what we will do to care for the people we love.

Are there limits to the loving care I will provide to my family members? Certainly I haven't experienced any limits to my love; not yet, and I don't believe I ever will. But I have experienced hard limits to the care I could physically provide in spite of my love.  Exhaustion and sometimes illness prevented me from giving the care my family members needed. In Kill Me Now, Joey's father Jake is stricken by debilitating spinal stenosis. Back pain so severe that it completely incapacitates is the trigger for everyone to re-evaluate the limits of love and care in this particular family.

Brad Fraser is a distinguished Canadian playwright who writes poetically about the alienated and the marginalized - outsiders. It's no wonder then, that he chose themes of disability and caregiving to examine in this new work. One reviewer clearly understood our daily dual realities of the mundane and the Shakespearean when he wrote: We’re seeing a troubled household here, but not a classically dysfunctional one. It’s certainly imperfect, offering sightings of flabby human bodies and the smell of pee. Fraser, a naturalistic playwright of the sort who would shudder at the thought of writing a traditional drawing-room comedy, finds his most comfortable spiritual home in the world of the alienated and marginalized....Cory Wojcik’s outstanding performance gives us a Jake who proves to be far more courageous, complex and tragic than the sagging, pot-bellied failure we initially take him to be, but even his resilience falters in the face of unexpected new challenges to the already shaky equilibrium of his existence. The abiding constant, however, is Wojcik’s truthful and heartfelt portrait of unreserved paternal love. It’s one for the memory books.

This could be the story of any one of us.

Fetal Alcohol Resource Program and International FASD Awareness Day

Every year on September 9th, International FASD Awareness Day is observed.  Proclamations are issued in countries, states, provinces, and towns all around the world.  Bells are rung at 9:09 a.m. in every time zone from New Zealand to Alaska.  People all around the world gather for events to raise awareness about the dangers of drinking during pregnancy and the plight of individuals and families who struggle with Fetal Alcohol Spectrum Disorders (FASD).  The first FASD Day was celebrated on 9/9/99.  This day was chosen so that on the ninth day of the ninth month of the year, the world will remember that during the nine months of pregnancy a woman should abstain from alcohol.  Anytime is a good time to raise awareness about Fetal Alcohol Spectrum Disorders (FASD).

To help increase awareness of ways we can support the FASD community, I interviewed the three FASD program coordinators in my hometown of Ottawa (Canada), Nancy, Janet and Tanya:

1) What is FASD and what causes it?

Fetal Alcohol Spectrum Disorder is a permanent physical disability caused when a mother ingests alcohol during pregnancy. FASD is a spectrum and affects each individual differently, but there are many common characteristics. Prenatal alcohol exposure causes permanent brain injury; damage to the central nervous system; and has been linked to over 400 co-morbid medical conditions. Alcohol affects the developing fetus at all stages of pregnancy: there is so amount or safe time to drink alcohol during pregnancy.

2)  What are the effects of FASD? 

The damage to the brain results in characteristics including learning disabilities; anxiety; difficulty understanding cause and effect; ADHD type symptoms; and developmental age significantly below chronological age. Most individuals with FASD have tremendous difficulty with time and money management and most will require supports with daily living throughout their lifetime. FASD is a full body disorder, and can cause damage to organs such as the heart and liver, and can cause a myriad of health issues such as arthritis and seizures. These issues are exacerbated by the fact that most individuals with FASD process medications differently and tend to experience extreme side effects.

One common misconception is that there are visible facial features with FASD. This is only true in about 10% of people with FASD. 90% will have no visible characteristics: it is a true invisible disability.

3) How common is FASD? 

Newest research indicates that 2-5% of the population in Canada and the U.S. are affected by FASD, though many are undiagnosed or misdiagnosed with disorders such as autism,ADHD, and Oppositional Defiance Disorder. Rates of FASD are significantly higher in our prison populations, as those affected frequently get in trouble with the law due to their impulsivity, inability to learn from consequences, and vulnerability to predators. This does not mean that people with FASD are dangerous: it means that we are criminalizing a brain based physical disability. We need to find a better way to support those affected.

FASD is very expensive for our society, estimated as costing us $1.8 billion a year. 

4)  What is most challenging for FASD caregivers? 

Raising a child with FASD can be exhausting for caregivers. It is a 24/7 job. Supports are few and FASD knowledge is minimal, especially in the school system. Caregivers tell us they are desperate for trained respite providers. There is no cure for FASD and it is a lifelong disability, so caregivers worry what will happen to their “children” after they are gone.

Individuals with FASD do not qualify for many government funded supports such as Ontario’s Passport Program, as these programs are largely based on IQ. Most people with FASD have an IQ in the normal range, but their executive functioning is impaired. Government assistance programs need to put more weight on adaptive functioning measures and less on IQ.

Raising a child with FASD is expensive for caregivers, with added costs including medications, occupational therapy, psychological services, speech therapy, private tutoring and respite. Parents have to undertake careful financial planning including setting up trusts and buying RDSP’s, as most people with FASD will never be able to fully support themselves.

Siblings are also affected by the stress in an FASD household. They worry about having to take over the parents’ role after the parents are gone.

5)  How can we support FASD caregivers? At home, in school, in society? 

We need to begin by addressing the stigma associated with FASD. No birth mother sets out to cause permanent brain damage to her child. 50% of pregnancies in Canada are unplanned according to Stats Can, and the damage of alcohol may have been done by the time a woman realizes she is pregnant. The birth mother may have been misinformed, or may be dealing with addictions issues. We also need to reduce stigmatization of individuals affected by FASD, and of their caregivers, since many are raised in adoptive and foster families.

We need GP’s and Obstetricians to give consistent guidelines to their patients that no amount of alcohol is safe in pregnancy. Our team is learning first hand that many physicians are still saying that alcohol in moderation is okay. We need our physicians trained in screening for possible FASD, and taught how to sensitively speak with a mother they suspect of having a child with FASD.

We need to support and replicate programs like our Fetal Alcohol Resource Program across Canada. Through education and community leadership development our program draws together resources, skills and knowledge that exists in Ottawa and provides community navigation for individuals affected by FASD and their families. We are a pilot project, and with support and funding, our program can be replicated across Canada to improve the lives of more families with FASD.

Within our communities, we can all support those living with FASD. Learn how you could offer respite to a family. Ask them what would be helpful. Listen. Offer to take the siblings on a special outing. Invite the whole family over for dinner. Educate yourself about the characteristics of FASD and don’t judge the child or parents for behavior issues that arise. Regular parenting guidelines don’t work with those affected by FASD. Include their children in birthday parties and outings. Teach your children about neuro-diversity. Spread the word about FASD to work toward prevention and reducing stigma. Support fundraising and awareness initiatives in your community including your local International FASD Awareness Day campaign.

6)  Tell us about some of the new research that is giving families hope. 

Hope is badly needed in the FASD community. Valuable research is being done, but some inspires fear and sadness instead of hope. A recent study indicated the life expectancy of someone withFASD is 34 years. This is shocking and unacceptable. One of our program partners and advisors, NeuroDevNet, is undertaking promising research in many areas, including innovative technology research; brain imaging; and developing an eye movement test to aid in FASD diagnosis. Their “Strongest Families” program is teaching us how we can better support our FASD families. They are collecting research data on our Fetal Alcohol Resource Program with a goal of having it replicated in other cities. 

If you would like more information about support for children and adults with FASD as well as research into treatment, you can click on these links. 

http://www.citizenadvocacy.org/fetal-alcohol-resource-program/

http://www.citizenadvocacy.org/mocktail/

https://www.facebook.com/FARP09092015/

http://neurodevnet.ca/research/fasd

September 9th is FASD International Awareness Day - A Great Chance to Learn More!

Tomorrow, September 9th, is International Fetal Alcohol Spectrum Disorder (FASD) Awareness Day.  FASD is the only wholly preventable neurodevelopmental disability - we need to create awareness in order to eradicate the devastating effects of alcohol consumption during pregnancy.  I've blogged about FASD before - and I hope to continue telling stories of families effected by this range of disorders.  If you are an FASD caregiver or you know someone who is, google FASD International Awareness Day and your city.  I sit on the NeuroDevNet Board of Directors (NeuroDevNet is dedicated to supporting research in the area of children's brain development) and we are helping to spread the word HERE!  Here in Ottawa, where I live, this is what we're doing!

Launch of new initiative in Ottawa for people affected by Fetal Alcohol Spectrum Disorder

What    Fetal Alcohol Resource Program Launch

When   September 9^th, 2015 at 9:30 am

Where  Wabano Centre for Aboriginal Health, 299 Montreal Road

Who     Brian Tardif, Executive Director, Citizen Advocacy Ottawa,         

FASD Coalition of Ottawa and people affected by FASD and their families

Why     Citizen Advocacy Ottawa is launching a two-year project with an overall aim to increase capacity to identify and meet the needs of children, youth, adults and families affected by Fetal Alcohol Spectrum Disorder (FASD).

September 9^th is International FASD Awareness Day when people all around the world gather for events to raise awareness about the dangers of drinking during pregnancy and the lifelong challenges of individuals and families who struggle with fetal alcohol spectrum disorders. The first FASD day was celebrated on 9/9/99. This day was chosen so that on the ninth day of the ninth month of the year, the world will remember that during the nine months of pregnancy a woman should abstain from alcohol.

Citizen Advocacy Ottawa is a small but powerful registered charity and is one of the few organizations that support people of all ages across the disability spectrum and their families – those with physical, intellectual, developmental, psychiatric and age-related disabilities.

Not Exactly As Planned - A Must Read Book About Family and Disability

It was months ago that I added to my reading list 'Not Exactly As Planned: A Memoir of Adoption, Secrets and Abiding Love' by Linda Rosenbaum.  But it was just this morning that I turned the last page and regretfully said goodbye to the Rosenbaum-Christmas family of Toronto Island.

Linda Rosenbaum and her husband Robin Christmas have two adopted children, but only one, Michael, who struggles with the effects of Fetal Alcohol Syndrome Disorder, or FASD.  Michael Christmas is a young man now, an accomplished wood carver who has learned how to be in the world through the love of his parents and sibling - a love that is imperfect but unwavering as in all the families I know who are raising children with developmental disabilities.

I cannot tell you how much I loved this book.  Linda Rosenbaum doesn't just tell us the story of her adoption or of raising a child with learning and behaviour challenges.  She tells us the story of her life and what meanings her family disability narrative held for her.  We learn the secret of Linda's maternal grandmother's mental illness.  We learn the vital importance of rites and rituals in bringing calm and order to families burdened by chaos and unpredictability.

But there's a more personal reason that I loved this book.  I too have a family history that impacted the way I felt about Nicholas' diagnoses.  Witnessing my father having a post-stroke grand mal seizure when I was 17 made me paralyzed with fear when Nick received a diagnosis of epilepsy.  I too struggled with serious depression and anxiety when I was a young student (I blogged about that part of my life HERE).  We are all a product of our experiences and that fact is revealed in harsh light when mothers and fathers struggle to be good parents to their children with developmental disabilities.

So many of Rosenbaum's words resonated with me.  Take this reflection, for instance:  "Parents often differ, but with a disabled child, the stakes feel higher.  We continuously wanted to 'correct' or teach or model.  We we had the power to 'fix'.  Every move counted."

Or this:  "I began sobbing.  What if my tears never stopped?  This is something for serious criers like me fear: that once we let ourselves go, we may never come back.  Shouldn't we know by now that crying, like life and a good story, has a beginning, a middle and an end?  Yes, perhaps I should have known.  But it's hard when I never know where the story is taking me next.  I kept crying."

I wager that every mother of a child with disabilities has experienced the panicky, out of body experience of sobbing long and hard, fearing it will never stop.  I have.

This book is not just about Fetal Alcohol Syndrome and it's not just about adoption.  It's about family, personal histories and the effects of disabilities on our children and all who love them.  I urge you to buy this book and then to look at Rosenbaum's website as I did this morning.  Her family photos and stories are a wonderful adjunct to her book.

NOTE:  I am honoured to serve on the board of NeuroDevNet, a Canadian Centre of Excellence that funds research into neurodevelopmental disabilities, including FASD.