The Natural Tribalism in Disability Parenting

A truth about disability parenting was revealed to me in two recent conversations. 

The first conversation was with an acquaintance - someone I don't see very often, but whom I care about very much. Like me, she's the mother of an adult child with disabilities but unlike me, she has had little support over the years. In combination with her own serious health concerns, my friend's path has not been an easy one. 

Yesterday we met and had a long chat. Tears were shed, hugs were freely given. We shared stories of the challenges and transitions we and our kids have experienced over the past year.

Today I met another friend who I don't see more than a couple of times a year. She too is the mother of a young man with disabilities who thrives with some support in the community. Her son has a meaningful, rich life and so does my friend, his mother. Today I mentioned that I'd run into the other Mom yesterday whom I assumed was a mutual friend, because we all live in the same community. It turned out that my friend today didn't know my other friend from yesterday's chat. But there was something else. 

I felt the difference between parents of severe disabilities and parents of children with more mild impairments. My friend who is the Mom of a son with milder challenges is one of the kindest people I know. She exudes natural healing and concern for others. It wasn't that she wasn't concerned for my other friend. She just didn't feel the kinship that I do. 

I recall writing a blog entry a couple of years ago titled For The Secret Club of Extreme Parenting and the opening paragraph read like this:
There is a secret club amongst caregivers.  Sometimes the experience of caregiving is so extreme, painful, dangerous and exhausting that it cannot easily be described to 'normal' friends and family.  And when that extreme experience constitutes family life over time.... years, even.... that is when caregivers become secretive.  They give up on explaining their lives. 

I was reminded today that there are tribes within tribes of caregiving. The extreme end of the caring spectrum is so different, so inexplicable that it's nearly impossible for anyone to comprehend it who is a stranger to it. But I also realized that's OK. We have each other and we belong to many tribes. I was also reminded that caring for someone with severe disabilities is very different from caring for someone whose needs are less apparent. And all of us on some days, just want to be called just kids and Moms, me included!  

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.

THE LIMITATIONS OF LOVE

Nearly two weeks ago, everything was going along smoothly. Writing was coming easily and I'd just had a visit with my Mom in Montreal, buying her fresh flowers for her balcony pots.  I'd done grocery shopping for our holiday at the cottage and the car was packed. I arrived up north and as I opened the old wooden door, I could hear the phone ringing. It was Jim who'd stayed home an extra day because of a cold. "Your Mom's had a fall and she's on her way to the hospital", he said.  My sister was away on holiday and her daughters were managing the crisis, thank goodness. My sister's three girls are not girls anymore - they are adults who know how to pitch in with my Mom.

Quickly, I made a plan. I decided to stay the night at the cottage and arrive at the hospital very early the next morning in order to take over the daily care with my Mom. I knew that too many people in the ER would confuse matters and I knew my nieces needed to work come Monday. I ended up staying with Mom morning till night for a week until I got a call from Ottawa that Nick was sick with the flu. He was vomiting and not tolerating his feeds. Luckily, my sister arrived home from holiday the day I left for home and Nick.

Nicholas is much better now and is back to his normal shenanigans. Mom is still in hospital and waiting for a convalescent bed. Nothing's broken, but she's still sore and weakened by her bedrest. Everything feels fairly calm again. I've just arrived back at the cottage with a plan to travel back and forth to Mom and Nick as needed. In the meantime, my sister is with Mom and Nick's with his carers.

I've been reflecting on the recent crises in our family. No one is seriously ill, but it felt like a crisis to me anyway. I dropped everything to be with my Mom and later with Nick. I thought of nothing else, but had trouble remembering details days later. Life felt extreme in the moment and blurry in the whole. I relished the slow time and open-ended conversation with my Mom. Yet going home from the hospital in the evening, I felt a sense of incompetence and failure wash over me. There was nothing I could do to prevent future falls.  When I received the message that Nick was ill, I felt badly that I wasn't with him. Love alone cannot mitigate the risks of frailty.

I've had to have a long chat with myself. I've had to accept that I cannot protect those I love most in life and I cannot be with them at all times. I've had to accept that there are no happy endings to old age and although love in the family helps, it won't change the final outcome.

Still, it felt good to drop everything, press pause on my life and surrender myself to people I love who needed me. I'm glad I can do it - I just wish I had superpowers to slow aging, prevent accidents and provide protection from illness. Maybe the lesson is that caregiving is about the doing, not the outcome.

CAN DISABILITY PARENTS HAVE A SEX LIFE?

There's something about caring for a child with disabilities that takes the "red" out of "hot" in the marital bed.  The arrival of a baby, healthy or not, can often put a damper on sex in the city.  I remember comparing notes with other young Mums when my kids were brand new - so much nursing and cuddling and living through the needs of a tiny, totally vulnerable person has that effect.  Perhaps it's just nature's way of helping parents keep staring at their vulnerable charge like a biological safety measure to ensure the next feed and change.

But what happens when the needs of that vulnerable charge never really diminish?  We keep our parental eye firmly fixed on our son or daughter with disabilities... we keep them safe.  So, what does it take to keep the romantic fires alight?  I would say that it requires a decision - a decision to look away from your child for a few minutes and look at your partner.  It's difficult, especially when looking only at your child becomes a habit - a habit that eventually feels like necessary breathing.

And TIME is the enemy here.  Most parents of children with disabilities have no respite, especially if their child is complex.  One couple I know who run a home hospital for their 42 year old son have not been out to dinner since 1997.  They cannot trust others to look after their precious son - his care would tax even a well-staffed, state of the art medical facility.

Some couples will have to muster lots of determination to make that decision to remain close.  Many will have to create complicated puzzles for respite plans, however brief.  But once the decision is made to have some physical contact with a partner, the decision is there - it becomes real.  Hands will be held, necks will be stroked, hugs have a chance of leading to something closer.

It takes courage to turn away from a special needs child, even for a minute.  But a little planning to ensure the best safety measures possible for a break of fifteen minutes or a weekend away can make a mother and a father into a couple.

ABOUT SPECIAL DADS

This Sunday is Father's Day.  In the realm of disability and family, we talk most often about mothers.  But today, I would like to say a few words about what it means to appreciate the Dads in our lives.

My own father, James Edward Thomson, was a gentle, kind and funny man who was much loved and died too young.  My Dad was the embodiment of what it meant to be an officer and a gentleman.  He was a terrific athlete and taught me and my sister how to stick-handle like Jean Beliveau and drive a golf ball 300 yards, or at least keep trying.  My Dad passed away in 1975 and I still miss him.

My husband Jim is like my Dad in some ways.  He is loyal, clever, hard working and detail oriented.  Jim helped the children with their math homework when I became mystified by the equations early in their academic careers.  He reviews Nicholas' health claims and finds extra cash by reading the fine print and closely examining our complicated files.  Jim feels the heavy responsibility of single-handedly creating the social safety net in our family by making financial, pension and insurance arrangements that will keep all of us safe and worry-free for our lifetimes.

He watches hockey games with Nicholas and taught Natalie how to ride her bike.  He skied with Nicholas when we were members of the "National Capital Disabled Ski Association" and he rigged a way for Nick to waterski sitting on a windsurf board with a teenaged helper behind our boat.

In her book, "Love's Labor", Eva Kittay talks about mothering a child with severe disabilities as "testing the very boundaries of what it means to be a parent".  But I would suggest that being a father does that too.  I know that my husband feels the entire weight of responsibility for our financial wellbeing.  Today, I want to say thank you to my husband, my own dear father and to all the fathers who inspire and contribute to special needs families today, yesterday and tomorrow.

ADVOCATE NOW TO GET THE HELP YOU NEED!

I wrote this article for Today's Kids in Motion Magazine and it appeared HERE. It's written for an audience of parents of children with disabilities, but the advocacy principles apply to all caregivers. 

They say it takes a village to raise a child, but in today’s climate of government austerity and private consumerism, where are all the compassionate villagers?  Is it possible for families to successfully galvanize community supports to help them raise a child with disabilities?  The answer is YES, if they borrow strategies from professional lobbyists to influence government agencies, community leaders and neighbourhood resources.

There are four things that parents of children with disabilities have in common 1) They are exhausted, 2) They are on at least one waiting list for help with family needs 3) They probably haven’t had a real break since their child was born and 4) They fear the future because they know they can’t survive the long term with the first three realities.  Most families know they should advocate for help with care at home, but they don’t know where to begin.

WHY ADVOCATE?

Parents of children with disabilities perform thousands of small tasks every day.  Each task in itself seems perfectly doable, but over time, parents can be worn down by the weight of caring and constantly seeking support.  Engaging in a coordinated advocacy effort to access help at home might just seem like one more thing to do, but it’s worth it – and you don’t have to do it alone.  In fact, a team of committed family members, friends and community members can do it with you.

The building blocks of advocacy are: ANALYZING what help you already have that is helpful, IDENTIFYING what kind of help you need, RESEARCHING the community for sources of direct help as well as people to help you advocate, CULTIVATING a champion within your target organization, and EXECUTING your request under winning conditions. Professional lobbyists use these techniques to influence government – families can use them too.

WHAT DO YOU HAVE?
To begin advocating for care, it's important to understand the 'givens', or what you already have in the way of support.  Knowing what kinds of help are actually helpful to your family is the first step in deciding what you need. A friend who takes ALL your children for a sleepover is one kind of informal support that may be truly helpful.  A weekend half-day respite programme for your special needs child (formal support) might be too far away, making it more bother than it’s worth.  Begin by assessing what kind of assistance you have for the whole family currently and decide what kinds of help are helpful for YOU. 

WHAT ARE YOUR TASKS CURRENTLY?

Next, make a list of daily tasks that you carry out for your family’s care and wellbeing, putting a star beside those tasks you would assign to an outside person, in an ideal world.  Some families find a weekend away most rejuvenating, while others may seek after-school or dinnertime help.  If a child with disabilities is often ill, parents may wish to spend time at the hospital bedside.  That means assistance with other children and pets at home.

WHAT HELP DO YOU NEED AND WHO CAN HELP YOU GET IT?

Parenting a child with disabilities is an isolating experience.  So it’s important to survey the local community in detail - this means Googling your neighbourhood or city.  There might be a community group, church committee, high school club or neighbour who could provide support.  And that support could be in the form of helping to create a strong advocacy ‘team’.  Local community centres have a mandate to support healthy families and most high school students must complete volunteer hours in order to graduate.  Remember, you are searching for both places that might offer programming AND people who could help you advocate. 

At this stage, an advocacy goal for home help should be formed.  It might be, “one weekend per month respite for my child with disabilities”.  Or it could be, “a teenager to help with homework after school so that I can make dinner.”  Families of older children may be seeking to plan future supported housing arrangements.  Whatever the advocacy goal, a group of family and skilled friends will be required to pull together as a team to locate resources and advocate for solutions.

THE STRATEGIC INQUIRY

Once an agency or resource organization has been identified as an advocacy target, an information process called a ‘strategic inquiry’ begins.  This process involves seeking advice, developing a deep understanding of ‘who’s who’ in the organization and building a relationship with key players.  The objective of the strategic inquiry is developing a clear understanding their objectives.  For example, if respite means having someone with nursing skills for your child, the advocacy target may be the local medical college.  A cold call to the office of the Director to ask about getting help into your home might not be successful.  But, an information gathering appointment (with you or someone who has agreed to help you advocate) will very likely reveal some strategic next steps.  An appointment to ask advice could be the first step in cultivating a senior official to be ‘your champion’ within the target organization.  He or she will represent your family’s interests when budgets are being decided and programming decisions are made.

ORGANIZE WHAT YOU LEARN - THE BRIEFING NOTE

Nominate someone on your team to be the record keeper for your advocacy effort.  Their job will be to organize copies of important background documents such as medical reports, meeting notes and contact details for all concerned.  Your team secretary will also produce a document called a ‘briefing note’ – that’s just a fancy name for a handy, bullet-point advocacy tool.  The briefing note should include a few sentences introducing your child with disabilities and the key supporters in his or her life, such as family members, special friends and anyone else who is active in supporting your child.  A list of needs and supports in point form is next, followed by a brief story or anecdote to illustrate your situation and needs.  Finally, there’s a list of questions with lots of space for note taking during meetings with your potential sources of assistance.  Sample questions might be, “What advice do you have for our family?  How have others dealt with similar situations?  Who else can I speak with about our request?  What can we do for follow-up?”  After the meeting, don’t forget to drop an email to say thank you – in advocacy, a polite expression of gratitude is worth its weight in gold.

Good practice in advocacy will not guarantee outcomes, but it will deliver greater opportunities for success.  And that’s vital, because going without help at home over the long term is not a healthy future plan for any family.

Parents of Kids With Disabilities Don't Get Sick, Right?

This morning, there is a medical appointment in my diary.  It's not a specialist clinic for our son Nicholas; it's for me.  I'm going to review my spinal xrays with our GP.  I've abused my spine by lifting Nicholas throughout his life and Natalie when she was small. Now, I have degenerative disc disease and my neck and back are causing pain that interferes with my happiness and my mobility. I might be a danger on the road because I can't turn my head to see the car behind me! 

All of this got me thinking about how we parents of children with disabilities manage to cope when we’re ill or injured.  We can’t book off our children’s care for a day or two if we get the flu.  So how can we plan for the times when even the most determined and attentive parent will be so sick that help is a necessity just to keep everyone fed, bathed and safe?

Once, I came down with viral meningitis.  Natalie was a toddler and Nicholas was four or five.  At that time, an older teenager called Cali lived with us to help me with nursing and childcare at home.  She and I worked hard to keep my two complicated children safe and healthy.  But when meningitis made me realise that no amount of willpower could get me out of bed, I felt desperate.  I cried to Cali, 'what are we going to do?  You can’t look after the kids by yourself!"  My husband was travelling on business and we were living abroad, so we had no family nearby.

But Cali had a family and it was her mother who came to stay.  Mrs. Roffey came to cook, do laundry, play with Natalie and spread a sense of calm and control throughout our home.  I was lucky that within a week, I was out of bed and back to my usual routine.  I can’t imagine how awful that week would have been if Mrs. Roffey hadn’t been our guardian angel.

CREATING THE EMERGENCY PLAN

A caregiver 'angel' isn’t available to every caregiver, though.  That means it's essential to have an emergency plan in place for when the caregiver is too ill to carry out life-sustaining responsibilities.  For those tag-teaming with their spouse or another competent adult, an emergency plan could be as simple as promising to step in for the other in case of illness or emergency.

For single caregivers, the best place to start in thinking about creating an emergency plan is by making a list of anyone who has been helpful (or offered to be helpful) in the past.  It's a good idea to have a 'Plan A' and a 'Plan B'.  Write a draft email to a couple of prospective surrogate caregivers who have the willingness and ability to care for your child (or learn the ropes quickly).  Explain that you are creating an emergency care plan for your home and you are asking for a commitment of help to replace you, the caregiver, if you become temporarily incapacitated.  Leave no stone unturned to explore other sources of emergency assistance as well.  If you have a social worker, ask what they suggest.  Local community centres and churches sometimes have committees that can handle such family crises.  In the case of emergency care for school age children, schools are a natural partner in crisis scenario planning and so are other disability parents.

An emergency respite plan is a good thing to have.  And beginning that conversation with friends, family and neighbours could lead to greater awareness of your role as a caregiver and your need for regular respite.  The emergency planning might be an opportunity to create a network of care for your loved one.  Either way, like making a will or planning a fire escape route from your home, emergency planning in the event of caregiver illness is a great insurance policy against true catastrophe.