Friday, 23 September 2016

Dancing a Tango With Medical Professionals

Today I am in Fort Lauderdale, Florida, at a conference of the American Association of CP and Developmental Medicine.  Yesterday I had the privilege of giving the Chambers Family Lifespan Lecture. It was a big opportunity for me to give voice to the changing relationships between our family and Nick’s treatment team that I’ve observed over 28 years. This conference is about childhood disability, but I believe the lessons I have learned are relevant for any family caregiver working with a team of professionals. 
Here’s a snippet from my remarks:
I’ve been trying to think of an analogy for relationships between families and medical professionals. The image that came to me is a night out dancing with friends. I love to dance!

I try to dance every day, either in a class or at home alone.  Dancing is good exercise, but it has purposeful communication at its core. And it’s a lot easier to do alone.  Dancing in public means that we have to risk the embarrassment of missteps. Going out on the town to dance, everyone prepares carefully for an exciting night out and maybe romance. Let’s extend that analogy to assume that one group of friends consists of clinicians and the other of families. In the 1980’s and into the 90’s, a set of social protocols prevented any intermingling of the two groups. People would nod and smile across the room, but no real conversation took place. Everyone stuck to their group and talked amongst themselves.  No one dared to dance and slow dances were unthinkable. Everyone pretended the night was great, but secretly, they were disappointed.

I’ll give you an example of how this analogy played out in my family. 

After several months of intake assessments at our children’s treatment centre, I received a letter inviting Jim and me to our first case conference.  The letter said we would discuss Nick’s progress in therapy and the results of his cognition testing would be shared.  At this meeting, the team would recommend a preschool placement. Nicholas was just over a year old at the time.

I had begun to understand that often, important meetings about Nicholas took place amongst professionals without Jim or me there. I pleaded with our social worker to include us in ALL discussions about Nick and she nodded sympathetically, promising to communicate our request to the team. On the morning of our case conference, I fixed my eyes on the boardroom door, trying to assess if our team was inside and meeting without us.  Our social worker finally swept around the corner and apologized for the delay in proceedings.  She ushered Jim and me into the boardroom where our treatment team members sat at a table strewn with half full coffee cups and file folders.  I realized the boardroom was between hallways and a second door was where everyone had entered an hour before. Decisions had been made and now they would be announced to us. In this ‘consultation’, my husband and I had one job as parents: to agree with the recommendations. I remember a feeling of dread rising in the pit of my stomach, thinking, “We have given up our child to a system that does not see or hear us.”

All of us reach our goals with the help of others, as a team. It’s no different between families and members of our professional treatment team. But to be a strong team, we have to come together as equals and we have to speak honestly, with kindness and with respect. And if we dance, let it be the tango where hearts are cracked wide open and most importantly, the lead passes back and forth between the two partners. In the tango, there’s no faking feelings or intentions. Steps are complicated, so there’s a near certainty of missteps. But no one minds because each partner is committed to completing the dance.

George Bernard Shaw said, “The single biggest problem in communication is the illusion that it has taken place.” Let's dance together in the real world, under no illusions, for the sake of your patient and my son. 

Wednesday, 14 September 2016

On Embracing Change

We're moving. Today. Four strong men pulled up in an enormous truck this morning and right now I can hear them talking quietly and gasping as they haul sofas and tables down the hall.

We bought this house in 1991 just before Natalie was born. Nicholas' main floor bedroom and wheel-in shower made this an easy environment for our kids to be closely observed, but not crowded. Natalie came home for lunch every day with a chattering group of her classmates and they spread their sandwiches out on the big kitchen table. I eavesdropped on their gossip as I hovered at the sink, pretending to be invisible.

Nick often had friends over after school to play video games or do homework. This house, across the street from the school, was a hub for after-school activities with snacks for friends whose parents worked late. Friendships bloomed.

One year, Jim built an ice toboggan slide on our sloping front lawn. He sculpted piles of snow with buckets of hot water to craft a shiny, rock hard surface that curved and slanted to form a short but fast run. This is our front garden in the winter - not much space for an ice slide, but Jim managed it. Sometimes the kids tumbled off the sled into the hedge, but they escaped laughing and unscathed.

Nick's school across the street has a large parking lot and playing field where we spent many after-school hours playing. In the summer, Natalie attached a skipping rope to link Nick's wheelchair and her bicycle. They set up a slalom course on the tarmac and had hilarious obstacle races. In the winter, we got bolder and tied Nick's recumbent sled to our dog Goldie's leash. Then we threw a tennis ball. Woosh! Off they went across the snowy field, Goldie barking and Nick screeching in delight.

Of course, I remember Christmases here.

We have happy memories in this house, but some painful ones, too. Nicholas experienced his most difficult struggles with pain here.

It's bittersweet to leave, but I am excited for a new chapter in the life of our family. We've bought a new house in the countryside just outside of Ottawa and still close to Nick and to my Mom. Just a short distance away, we will be in the woods with a babbling creek in the back garden. Our latest purchase is a 'bear-proof' garbage storage bin. Nick makes his first visit this weekend and I'm hoping that Natalie will be home for Canadian Thanksgiving. I don't know what our new life will be like exactly, but one thing I can guarantee is that the fall colours will be gorgeous.

Saturday, 10 September 2016

When Caregiving Feels Like War: Learn From the Military

The other day, I was listening to a banker talking about the volatility of financial markets.  She used a term I hadn't heard before - VUCA.  It's a military term used by forces in Iraq and Afghanistan and it stands for 'Volatile, Uncertain, Complex and Ambiguous'.  "Wow", I thought, "that sure sounds like my life!"
So, I googled VUCA and found a website about using military lessons learned for corporate leadership.  And my intuition didn't steer me wrong - these lessons really are absolutely relevant to caregivers.  Because our world is always volatile, uncertain, complex and ambiguous.

  • Always retain a clear vision against which judgements can be made, with agility to flex and respond appropriately to rapidly unfolding situations. (Yes, we do that every day.)

  • Provide clear direction and consistent messaging against a backdrop of continually shifting priorities, supported with the use of new virtual modes of communication where necessary. (We practice this with our paid helpers, with doctors and with members of our extended families. And we use technology to help us communicate our changing needs.)
  • Anticipate risks but don’t invest too much time in long-term strategic plans. Don’t automatically rely on past solutions and instead place increased value on new, temporary solutions, in response to such an unpredictable climate. (This is an interesting one and difficult to achieve. Again, it's about agility, employing the benefit of our experience, and always looking for something new that responds to the NOW.)
  • Think big picture. Make decisions based as much on intuition as analysis. (Caregivers could give the course on this!)
  • Capitalise on complexity. If your talent management strategy is working, then you should be confident that you have the right people in the right place. This will enable you to rapidly break down any challenge into bite size pieces and trust in the specialist expertise and judgement of those around you. (Easy to say, hard to achieve. The caregivers we most admire do this well. They take complex situations and break them down, then work efficiently within a team.)
  • Be curious. Uncertain times bring opportunities for bold moves. Seize the chance to innovate. (Imagination and the drive to get things done quickly and easily makes caregivers natural innovators.)
  • Encourage networks rather than hierarchies – as we reach new levels of interconnection and interdependency collaboration yields more than competition. (Absolutely! We are all interdependent and never more so than in caregiving families.)
  • Leverage diversity – as our networks of stakeholders increase in complexity and size, be sure to draw on the multiple points of view and experience they offer. Doing so will help you expect the unexpected. (I love this one! In my family, we have all been so enriched by relationships we've had with our paid help from different cultures. Even ageing and disability as examples of diversity in my family have enabled us to explore new territory of human experience.)
  • Never lose focus on employee engagement. Provide strategic direction, whilst allowing people the freedom they need to innovate new processes, products and services. (This goes for working with members of extended family and with helping friends, too.)
  • Get used to being uncomfortable. Resist the temptation to cling on to outdated, inadequate processes and behaviours. Take leaps of faith and enjoy the adventure. (This is the zinger. What a nugget of good advice for caregivers!)

Thursday, 8 September 2016

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. 

Saturday, 3 September 2016

The Talk Disability Parents Want With Doctors

In the early days of our therapeutic journey with Nick, it was clear to me that any show of love or grief diminished my power. In meetings with the treatment team, I would try to be 'professional'. I tried to hide my emotions in order maintain my dignity. And I brought a briefcase and shuffled papers in a show of power. It was a sham.

Some days we have feelings, strong feelings. So do our doctors. But we talked around our feelings and I don’t recall ever once anyone asking me, “What do you believe is happening to your son? How do you feel about your treatment choices? How can we support you now, given Nicholas’ realities?” I do remember saying, “I need you to be kind to me; I really need that.” In my way, I was pleading for a compassionate, honest conversation that would enable us to examine each other’s understanding of where we were with Nicholas’ treatment and where we were likely to go. I wasn’t seeking certainty; I was seeking honesty, reassurance, respect and kindness.

So, what are the conversations families really want to have with doctors?

In the period after diagnosis, parents are in shock. I think the first question we have, which is difficult to voice, is ‘can I love my baby?’. I think it’s a deeply human question for parents to ask themselves because suddenly we feel we may not have the knowledge or skills to care competently for a complex infant. Parents need a lot of reassurance that we can love and care for our baby. Soon, questions become centred on our child’s future. ‘Will my child survive?’ becomes ‘Will my child be happy? Will my child be able to learn at school? Will he work and have a family?’ These are the questions that are crucial for families and doctors must address them with great compassion and kindness. 

We are beginning to understand that like illness, disability has a family narrative. Our personal histories influence the way we approach the questions “should I fix my child or should I accept him as he is? What is my moral belief about the human worth and innate goodness of my child as he is?” And these are fundamental questions for CP and developmental clinicians too. Honest answers to those questions shared and agreed between family and professionals should form the foundation for a therapeutic approach. And the periodic check-up questions should be “Is this approach helping our child to do what he wants to do? Is the approach helping our family live the kind of life that we value, given the givens? If not, how we can we change our approach?”

I used to think that therapies and interventions had just pass or fail grades. And that as a parent, I was either a hero or a total loss. These beliefs are false and simplistic. The fact is that all of us have limited potential, but recognizing where our talents and interests lie, we aspire to be the best we can be. Experience teaches us to identify our goals on the basis of Peter Rosenbaum and Jan Willem Gorter’s “F Words in Childhood Disability”: function, family, fun, fitness, friends and future. And we reach our goals with the help of others, as a team. It’s no different between families and members of our professional treatment team.

So here are the questions that I suggest professionals who are treating our children with disabilities ask themselves before speaking with families:

How can I help families develop a concrete plan for intervention based on their personal freedom and choice? How I can support that plan in the clinic, in the home and in the schoolroom? How can everyone in the circle of care be reassured they have an agreed understanding of realities and treatment choices? What protocols can I put in place to keep lines of communication open but not intrusive between appointments? When change occurs, repeat these questions.