Tag Archives: family advocacy

Rookie therapists, rookie family support

June 26th, 2019

“Thank you for the opportunity to work with your son,” the therapist said at our last appointment.  “I’ve learned so much.”  He had been a good therapist but a very inexperienced one.  The old therapist had moved out of state and my son needed an appointment with no lag time, so we traded off waiting for someone experienced with having someone quickly.  I knew from the beginning that he was a rookie, but the advantages outweighed that, or so I thought.  He had grown in his understanding of us and the next person would reap that benefit.  Just not us.

My complicated son was a challenge to even the most experienced therapists.  His laundry list of diagnoses and symptoms didn’t fit neatly into any slot.  But inexperienced therapists mistook his anxiety for ADHD and his meltdowns for conduct he could be enticed to control with star charts.  Both were untrue. We had to wade through these tentative, by-the-book steps each time we had someone who was a rookie.

Complicated kids with significant mental health problems get matched to newbie therapists every day.  Veteran parents talk online or in support groups about ways to speed up their learning curve.  We share our hard won knowledge with them and try to temper their faith in the system with our practicality.  Sometimes it works.

The very best match is for a complicated child to see an experienced therapist.  That therapist draws on their book learning, just like rookies do, and knows when to throw some of it out the door.  They pull strongly on their own hard won knowledge and have a really good idea of when to stay the course or try something new.  They often see parents as allies, bolstering our belief in ourselves.  They get it.

Many years ago, I heard Robert Brooks, a child psychologist, speak about children and building resilience.  Although I was fascinated by the topic, what I still remember was that he said he should probably go back and apologize to the patients he treated early on in his career, which was an unexpected thing for a psychologist to say.  There was so much he didn’t know, he had realized.  He gave his then-best in those early days, but lacked the wisdom, experience and empathy he gained over time.  Those are precious components in the work of therapy, ingredients that are built steadily and slowly, which make an enormous difference.

Recently, I had a chance to co-author a chapter on family advocacy in a handbook for the American Psychological Association with Kathleen Ferreira.  We wrote about the work of family partners and family support specialists and how their impact is unparalleled.  We were enthusiastic about promoting the importance of family advocacy in a volume that will probably be used to educate new psychologists.  We paused midway through and talked about the mismatch we both see between complicated kids and inexperienced therapists.  “It happens with family advocates, too,” I said and we immediately saw the parallels and went on to toss that idea about several times.

Most professions recognize that the beginner, the one who has the initial required qualifications, still has a long way to go.  In sports and law enforcement, the newbies are called rookies.  Other professions, like social work, have different levels of licensure, which indicates both experience and education.  In other occupations, such as being an electrician or plumber, there are well-defined levels of expertise.  This is also true in professions as diverse as musicians and carpenters.  A light bulb went off for both of us and we decided to apply this to family advocates.

At the novice level, we wrote, there is a great deal of enthusiasm, but also “well meaning mistakes.”  Next, at the apprentice level, the family support person has greater skills and is beginning to understand how tough the system can be to navigate.  At this stage, people often realize that while they did everything right, they didn’t get the results they intended.  Third, at the journeyman level, the family advocate has more good days, better results, has seen more and is becoming adept.  Finally, at the master level, we wrote, the family support person or family advocate “does not guess, but rather knows what to do. The advocate has skills that often make the work look effortless to others, and that is reflected in the results.” This is the ladder to mastery – from novice to expert.

Family advocacy or family support work is still pretty new and we are all still trying to find ways to talk about it.  When my son was young and we were trying to educate a rookie therapist, I noticed that my fellow family support specialists were all over the map in terms of expertise.  Some had it all together with mountains of knowledge and skills.  They were comfortable helping families whose children had significant mental health needs navigate through special education, call their insurer or make their case to state agencies.  Others knew some of that, but not all.  Still others were rookies, enthusiastic, knowing their own experiences could help the families going down the same road.  But they had a lot to learn like any newbie does. When this work was new, we were quiet about our learning curve.  We were working toward acceptance, endorsement and validation of our work.  It was the right thing to focus on then.

That was then.  I’ve been the novice, apprentice, journeyman and master.  I’ve faked it, hoping no one saw my skill gaps and I’ve said, “Let’s figure it out together.”  Like that rookie therapist my son had, I’ve learned from every parent who was gracious enough to teach me what they knew.  In the end though, complicated kids and families do better when there is expertise.  Rookies, please learn quickly.

Tags: , , , , ,

Posted in Blog Posts | 5 Comments »

Without advocacy we cannot change a damn thing

November 20th, 2016

lily-tomlin-quoteWithout advocacy we cannot change a thing.  Heaven knows there’s a lot that needs fixing, changing and bettering in our world today.  Sometimes the changes are small and just need a little push.  But many times, a small push won’t cut it.  Big changes require big advocacy and advocacy requires boldness and bravery.

When I first started advocating for my son, I believed that the school and mental health systems were built to provide services for kids like him and that those services would be delivered quickly and match his needs.  I paid – still do – a hefty sum each month for insurance (surely that would open doors?) and I knew I could make my case.  I figured I could rely on the goodwill of the people who were concerned about him.  I absolutely knew in my heart that these were the necessary ingredients for success.

I know you’ll be just as surprised as I was to find out that’s not how it works.

I lived in Southern California when my kids were young. When my son was seven he was in a regular second grade classroom.  He had already missed the second half of first grade because of phobias, depression and suicidal behavior.  He had had one pretty lengthy inpatient stay.  The school suggested that the school psychologist, Maryellen, evaluate him.

When Maryellen and I met, I felt nervous but sure that we would see eye to eye.  She ran through the test results and agreed with his diagnoses.  She added that he was very, very smart – his IQ was in the near genius range.  She looked me in the eye and said, “High IQs tend to run in families.  His father must be very smart.”  I felt sucker punched and barely heard her say that she felt his high IQ more than compensated for his mental health challenges and therefore he didn’t need any help.  Later I realized I had experienced disrespect as a tactic to change the meeting outcome.  On that day an advocate was born.

Moments like these change things.  You realize the world doesn’t work the way you thought, people don’t act the way you imagined and instead of a straight path from point A to point B, it’s more like a hiking trail over rocky stretches, across streams, in rain, sleet and snow.  It can scare even the most intrepid hiker, but here you are taking the first step.   You learn not just to advocate, but to become an advocate.

It’s unlikely that you’ll get what your child and family need in the mental health world without advocacy.  People don’t rush to suggest services and insurance companies don’t agree matter-of-factly that you should get that treatment you identified.  You find out you have to make it happen.  You may become an advocate eagerly or reluctantly, by immersing yourself in knowledge or fighting every step of the way, but you change yourself.  You change your expectations, you change your definition of success and most of all, you change who you are.  As one mother said to me, “You become the parent your child needs, not the one you thought you’d be.”

Advocacy can be uncomfortable.  For those of us who didn’t raise our hands for the teacher to call on (because then everyone would look at you) or make waves or dig in their heels as a matter of course, it doesn’t feel natural at first.  Advocacy is something done publicly.  It is played out in a setting that is very different from many other things we do.  You do it in front of an audience, sometimes big, sometimes small.  While some nod their heads along with the points you make, others assume a “show me” stance.   When you get them to nod their heads too, even a little, you feel pretty fine.

You learn that advocacy does not have to be adversarial.  It is sometimes, but many times it’s not.  Lots of times it’s about being articulate, passionate, persistent and even patient.  It’s also about being prepared and being stubborn.  It’s about looking for options and sometimes creating them.

Without advocacy, people assume we are okay with the status quo.  Without advocacy they don’t hear us or overlook our perspective.  Without advocacy, we cannot make a difference for our family and for other families.

For many families, figuring out how to go about advocating is like playing a Jeopardy game.  You know the answer you want and you try to figure out the right questions to get there.  Advocacy is a skill, or set of skills, just like playing Jeopardy.  If you hone those skills, you might get the jackpot instead of the smaller prizes.  But even if you are a terrific player, there are still heartbreaking consequences if you make a misstep.  You have to trust in your skills when you cannot trust in anything else.  Unlike Jeopardy, there are days when you do everything right and you simply don’t win.

Advocacy is also about picking yourself up and going to the next meeting, the next discussion and bringing your A game one more time.

When I first began talking to other parents about my son and how we worked to get the services and treatment he needed, some would say, “I didn’t know you could say that” and a light bulb would go on.  Others would share their own stories.  Some would ask me to help.  When I did, I learned that if you help one family, you only help one family.  The barriers remain and the rocky stretches, treacherous streams and bad weather are there for the next person.

Individual advocacy for my family and other families was important, even crucial. But nothing changed for the families coming along after us – they were likely to hit the same snags and experience the same hazards.  Systems advocacy – working to change policies, laws or practice – changes things for many more families. The first time I sat at a policy table, I realized that here was the place to bring all those family stories, the skills I had learned and the hard won expertise.  Here too, you sometimes fight to have your perspective heard but when it is, it doesn’t echo anyone else in the room.  It’s why you are there.

My son watched me advocate over the years first for him, later for families like our own.  One day, he said, “I want to listen and watch.  I think I can advocate, too.”  Great, I told him.  And he has.  It’s a big undertaking to become a self advocate, with emotional fist pumping moments and moments of deep disappointment.  He understands that, too.  One day, when we were talking I told him, “Advocacy is our family business, you know.  Some families have stores or restaurants or trades where the children learn a lot about the business from an early age.  Just like you’ve learned about advocacy.”  He grinned and nodded.  “I’m okay with that,” he said.

Tags: , , ,

Posted in Blog Posts | 3 Comments »