Tag Archives: family support

Is hope a difference maker or something we give lip service to?

July 22nd, 2019

It was one more meeting where I described my young son’s extreme moods.  It shouldn’t stand out in my memory, but it does. It was a tedious meeting in a way, telling his story and mine one more time.  Yet, I was comfortable, too, painting a picture of his days, some wild and hyper-charged, others filled with pain and darkness.  This was a familiar task for me at meetings, at intakes and when someone new was providing care.  It was an emotional landscape I knew very well.

On the ride home, I thought about his moods, which were often two (or more) wild and crazy extremes.  I had a moment of clarity when I realized that part of my comfort was that our lives – his brother’s life and mine — had those same extremes.  We rocketed from periods of hope and expectancy to times of despair and darkness. Sometimes they mirrored my older son’s trajectory, but not always.  Describing my son’s swinging moods was the same as portraying our roller coaster home life.

I’ve thought a lot about hope and darkness, two emotional states we lived with over many years, so that it felt sometimes like they were additional family members.  Sometimes the jump from one to another was abrupt, like someone came and changed the paint on the walls from stormy gray to sunny yellow overnight.  Other times, it was like a dimmer switch that was slowly moved from low to bright light.  Some days my son would emerge from hours-long, pain-filled crying along with waves of outbursts and I’d see in his eyes that he was back.  He was lost and had re-emerged.  Those days I’d feel a flare of hope. My mood mirrored his.  Other times, my feelings of hope or darkness had less to do with him than my own feelings of passion or inadequacy, determination or exhaustion.

Hope and darkness were regular companions for me for a long while, just as they are for many parents raising children like my son.  We require ourselves to act calmly, firmly, knowledgeably or passionately around our volatile children and at meetings when we ask for help.  Sometimes we actually feel that way, though many times we fake it.  Inside, we are nurturing hope or battling dark thoughts.

Hope is a funny thing.  We talk about it a lot in the children’s mental health world and sometimes it’s even written into care plans. We don’t teach people how to nurture it or grow it, however.  We don’t recognize it and remark on it in others or ourselves very often.  We don’t reward it or know very much about strengthening it.  Often people believe it’s the child who needs hope, when their parent needs it just as much.

Hope is not reciting platitudes such as ‘everything will turn out for the best.’  It’s not little sayings or making wishes.   It’s something much more durable.   Chris Hedges, American journalist, writes, “Hope is not comfortable or easy. Hope requires personal risk. It is not about the right attitude. Hope is not about peace of mind. Hope is action. Hope is doing something.” For me, hope is made stronger by a sense of expectancy.  Not expectations, which regularly got blown up, but a feeling that something positive and satisfying might happen. And then doing something, even a small thing, to move life in that direction.

Parents are pragmatic people.  Our hope is anchored in real things, even if they only occur in small doses.  I pinned my hope on concrete things like the doctor saying his brain would change at age 14, letting him observe himself and be able to use those observations to participate in his own care.  I felt hope when I heard about the pipeline of medications that would be available in a few months or a year, when we’d exhausted all our options.  I was hopeful when I discovered programs or ideas to help my younger son, whose needs were just as important.

When those things actually happened my hope stayed steady for a while, chasing off the dark thoughts.  Sometimes I carried the embers of hope for all us, my sons and me.  I would see that spark of expectancy in my son’s eyes when he found something to look forward to and never want it to dim.   That was his hope joining with mine.

I got hope from other parents, too.  Parents ahead of me on their parenting journey, who had weathered emotional tsunamis and earthquakes. I heard how they got through it. They offered me ideas and strategies as well as laughter and understanding. They were parents who had figured out a way to grow hope.  Parents are practical people.  They don’t offer platitudes or empty promises.  They know the value of realistic hope.

Sometimes we are afraid to hope.  Sometimes our hopes are dashed.  But hope is a persistent thing if we let it be.  And we need it.

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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.

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Is it a support, education, leadership, networking or advocacy group?

December 26th, 2018

June came over to me and announced, “I think you should start a support group.”  I looked at her, thinking, “Me? Are you out of your mind?  I don’t have any qualifications for this.” She continued on, “You’ve been to support groups, right? And you’re a leader.  That’s all you need.”  I mumbled that I’d think about it, hoping she’d simply forget it.  She didn’t.  She was PPAL’s first director, trying to grow the organization, creating new groups throughout the state.  I looked like a pretty good prospect.

A few weeks later, I found myself in a room with 8 or 9 other parents, who all assumed I knew what I was doing.  I was excited at the turnout, feeling like an imposter but determined I’d make the time we spent worthwhile.  It turned out the group was that rare combination of valuable and enjoyable, that night and many, many nights to come.

Although we called ourselves a parent support group, it was much more.  We had only three “rules,” one around privacy (what’s said in the group, stays in the group), one around blaming (no blaming, especially not yourself) and one on ownership (the group belongs entirely to the group).  Because of rule #3, group members became very proactive.  They scolded one another when someone said their child’s behavior or illness was all their fault.  They’d point out that you can’t find solutions when you are blaming yourself, or someone else.  They’d come with resources and new ideas for people they’d met the time before. They cared about labels and words and how we spoke about our children and families.

Someone would point out regularly that the group was about more than support. It was advocacy, problem solving, education, outreach, stigma busting and trying to change the way systems treated our children and us.  “Calling it a support group,” one mom used to say, “sounds more like a pity party than what we really are.”  Whatever we called it, it continued on for years, adding new members and saying goodbye to others as their children became adults.  Since then, the rules have grown for support groups, but what parents need from them has stayed the same.

Originally, support groups were never intended to be a service.  They were a place where people learned from one another, not just the how-to’s and the go-to’s but emotional learning.  Anger was shared and so was grief and we learned that they were okay, everyone felt them push insistently into our day no matter how we pushed them back down.  Sometimes you let those feelings flood you and then you’d release them (at least a little) and other times you learn to harness them and use them to make changes or challenges barriers.

Support groups were a place where leaders were born and then nurtured.  Someone would develop expertise, hard won almost always, in special education or insurance advocacy or navigating the courts and they would teach and lead others to success.  Someone else would be a little further along in their emotional journey and learn how to change minds with their story or create change with their advocacy.  Another would know where the resources were, such as a resale shop so your child’s expenses didn’t break the bank this week or a community class where your child would be welcome.

I never thought I would be a leader but I took it on.  I shared my experiences and was nakedly honest about my failures as well as my successes. A group member would say, “I never thought I could say that in a school meeting.”  Another person would muse, “I never thought of it that way.”  Maybe the best comment of all was, “When you said that, it must have changed the meeting.” A good leader has to be vulnerable as well as strong, I found, and a perpetual learner.  There is practically no chance we can ever learn everything we need to know.

Originally support groups were created to connect with families, connect families to one another and nurture parent leaders.  To make leaders, to encourage people to go forward, they need a safe spot to come back to, to tell their story and received cheers or sympathy.  They need others to have their backs and simply care.  Sometimes they need to regroup and brainstorm for the next step.

Social media has impacted both support and support groups and created new language as well.  There are threads on Twitter, where patient advocates take cutting edge medical or psychiatric information and get it out to people who have few other ways to access it.  (Who among us subscribes to medical journals?) There are Facebook pages with varying degrees of privacy and varying levels of member screening.  You might, for instance, find the person liking your post is not another parent after all.  People with similar diagnoses or problems to solve meet online, private message, email, face time, Skype, watch YouTube videos and blog.  Their goals may range from sharing information to sharing strategies.  They may offer support or mentoring. Like everything on the internet, you can access amazing and invaluable information or support or find the quality not worth your time.

About 3-1/2 years ago, I was at a health bloggers conference and met Susannah Fox, an advocate and scholar of peer-to-peer health care and a former chief technology officer of the U.S. Department of Health and Human Services.  She writes that one in four people in America receives information or counsel from someone with a similar condition, often online. “Few of us,” she writes, “can read everything about our condition. Those who have gone before us can help sift through the mountain of information for what’s most useful.” She is a strong proponent for patient advocacy or peer-to-peer healthcare and posits that we are in the midst of an online health revolution.

If June were to come over to me today, would she ask me to start an online support group?  Or maybe a series of videos or a chat platform? I wonder if it would be the same.

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Don’t call me an enabler. Or anything like it.

August 24th, 2018

Let’s talk about enabling.  Or rather, let’s talk about being accused of it. Happens quite often to parents like me.

The first time I ever heard the word “enabler,” and later its sister words co-dependent and over-controlling, was early in my son’s mental health journey.  He was doing progressively worse each day, exploding over minor things, threatening to hurt himself daily and I went looking for support and help.  I made a long series of calls and finally got what I thought was a sympathetic and wise person on the phone.  She listened, asked a few questions, then pronounced that I was an enabler.

My son was 7 years and, as it turns out, about to have his first psychiatric hospitalization. What I needed was help, not a label.

It also turns out that she knew diddly squat.  It took me a while to figure that out.  I took that word out and turned it over and over and even shook it a few times to see if it would change into something else. It didn’t.  It stuck in my mind, adding to my doubt in those dark moments when I wondered if I could parent my son with his enormous needs.  It undermined my pleasure when I found a moment, all too rare, when I sat with my son and we both enjoyed the moment, the hour or the afternoon.

About a year later, I found a group of parents who all had children like mine.  Some had teenagers (and their stories scared me), some had girls, some were strict and some weren’t.  At a meeting, I told my story of the phone calls and being called an enabler.  They laughed, they scoffed and they said it had happened to them as well. I felt a weight lift and some of the guilt leave.  I wasn’t ready to laugh along with them though.  The woman on the phone had been so certain.

What I had started to do from the very beginning was use a mashup of techniques that actually work for those of us trying to parent a really challenging child.  I was letting behaviors go that weren’t absolutely necessary to deal with right then and there. I was trying in a thousand ways to accept and support a son who the world was rejecting when they saw him in his bad moments.  I was adjusting to our new normal. The lady on the phone asked me what I did when my son had meltdowns and I told her I was letting the unimportant go and accepting my son no matter how he behaved.

When you parent a child with mental health needs, you are very focused on finding what works for your child.  You can’t afford a lot of trial and error and it may look controlling when you say no to things you’ve tried before or you just know are unlikely to work.  You also learn how to manage the details.  My son would have a meltdown if we walked through a store with images of zombies or monsters on t-shirts, DVD covers or books so we got good at avoiding those sections.  Sometimes his younger brother would walk 10 steps ahead and turn over the images so we could only see the backs of those items.  Yep, you bet we controlled the environment and even where he walked sometimes.  We made it easier on him, but also on us.

Enabling is described as excusing, justifying, ignoring and smoothing things over for a person who is addicted, has a mental illness, has out of control gambling and so on.  The enabler thinks things like, “If only I can keep this person going through their current crisis, it will buy us another day.” If I had been asked if that definition or self-talk fit, I would have raised my hand in a heartbeat.

When I stopped talking (much) about the details of my son’s life to people who didn’t know us, or had little expertise in children’s mental health, I stopped hearing words like enabler. The therapists, psychiatrists and special education teachers who had experience with mental health issues in children simply got it.  They were using the same techniques I was and comparing notes with me.  My hard won knowledge and experience in what works were seen as just that – expertise.

I’m pretty sure, however, if I looked at the notes from the early IEP meetings or therapy visits, I’d see a word like enabler in there somewhere.  And that’s the problem.  Those words get put in the notes and the next person sees them and maybe wonders or believes it to be true. One casual observation from someone who has a little knowledge and more judgy-ness can have an outsized impact.  So, please don’t call me an enabler.  You’ve got that wrong.

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Five things that parents need you to say

July 16th, 2018

There are memory moments you take out, hold up to the light and bask in for a minute or two.  They give you a little spark of brightness, a lift or bump of energy.  Those are moments you hoard and take out sparingly because you know you’ll need them again.  You don’t want them to lose their impact.

When my son was nine, I had such a moment.  It was a particularly tough time when nothing was going right.  He was diagnosed with depression but the succession of medications made him wired, rarely sleeping, acting on nearly every impulse that crossed his mind.  I was taught behavioral strategies which were pretty worthless and the word “no” reliably caused meltdowns or worse behavior. I was tired, discouraged, often near tears and holding on with a grit-my-teeth determination.

During an appointment with his psychiatrist, my son flipped through every mood, touched everything in the office and was headed for a major outburst.  I don’t remember what I did – talking, rubbing his shoulder, bribing or distracting but it worked for a few minutes.  The doctor looked at him, then at me.  He said, “You two are a very good fit.  Your son is lucky to have you.”

I replayed those words over and over again that day and would take that moment and those words out and relive them over the years.  I never doubted them and felt more confident.  They always lessened my discouragement (at least a little) and became a kind of touchstone.  Every parent raising a child with emotional, behavioral and mental health needs simply should have one of those moments.  Two or three, or even more would be even better.

Many appointments are focused only the child or youth and have little time for conversation, except for giving directions for follow up.  Sometimes parents call, email, facebook or contact someone for help and the entire exchange is focused on problem solving.  We are all thinking about the needs of the child, not the parent.  We give lip service to the notion that a parent is the most important part of a child’s life, but that’s about all.

Parents raising children and youth with mental health needs have learned to take a smidge of encouragement and run with it.  It’s usually in short supply.  Whenever there is a chance, it’s important for all of us to hear these five things.

1.  Your child is lucky to have you. Parents hang in there and do the best they can. We are blamed, judged and excluded regularly and many times don’t feel lucky at all.  Our efforts go unnoticed though we are the ones dealing with the aftermath of the latest meltdown or shopping for a rigid eater or anticipating the next crisis.  Without our advocacy for services and school supports or our willingness to live one day or one hour at a time, things would be a lot worse.  It’s really nice when someone notices that.

2. It’s not you, it’s the system. Our children don’t get approved for services or we have no idea what’s available.  A program or treatment is stopped too soon or we wait for it forever.  We do our damnedest to parent well, to keep our child on an even keel and then the system simply doesn’t work the way we are told it’s supposed to.  It feels personal.  It’s nice to hear it’s not.

3. I like the way you said that. Parents often have a unique way of looking at things and they coin their own phrases or create funny names for things.  My son and I made up names for our pointer dog and she was the stand in for a lot of family jokes.  Parents shouldn’t need to learn jargon or acronyms (though most of us do) and we often use words that make things sound less intimidating.  Instead of talking around us or “above” us, appreciating our point of view is worth a lot.

4. You’re doing everything right, even if you’re not seeing the results. Thomas Edison, they say, failed 1,000 times before creating a successful light bulb. All the diets, discipline and many treatments we try often don’t work.  We take the blame on ourselves too often or wish we were better at this. We are often doing it right but the results don’t point that way.  It’s nice to hear it said out loud once in a while.

5. You’re doing a good job. It’s a tough job, raising a child with emotional or behavioral issues. People are quick to judge (why can’t you control him?) or offer platitudes (it’s only a phase).  There is still a lot of stigma out there around mental health issues and many parents feel it’s not getting any better.  Even professionals who say they are strengths based in their approach only offer suggestions or new things to try without taking the time to notice our good work and herculean effort here and now.

Parents are great at detecting what’s authentic and what’s not.  One of the reasons it meant so much when my son’s psychiatrist said he was lucky was because he truly meant it.  If you say one (or more) of the five things, you’d better really believe it .  On the other hand, if you truly mean it, it might be one of those moments a parent like me takes out when the going gets tough to cherish and make their day a better one.

 

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