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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Our family’s path to recovery from trauma

October 16th, 2018

My children and I are currently in recovery after leaving a domestic violence situation back in 2010.  Both my children and I have PTSD, but we are on the path to recovery.  Both of my children also have high functioning autism, complicating treatment and their recovery.   It has been a long haul to get where we are today.  Not all of the treatment that we have received was helpful or effective.  The biggest thing that has helped us is knowing that we have friends and family that care about us.  I am sharing our story because what has helped us may help others.

When I initially left my ex-husband we were extremely isolated, and that made it difficult to leave and heal.  I am originally from the North Shore, and my ex moved us to Lowell, which isolated me.  I didn’t know anyone in the area.  Luckily, we found a program that allowed their social workers to visit me frequently.  They provided the support that I needed to push me to follow through with leaving my situation.  This experience has taught me that we truly need the support of others  There are some things that we cannot do completely alone.  Raising children is one of them.  It really does take a village.

After leaving my ex, my family immediately started therapy with a big agency in Lowell.  This agency taught me how to restrain my children, triggering them in the office to have me practice restraint.  I now know this was a completely inappropriate thing to do.  Restraint should always be a last resort.  This agency, like many in the Lowell area, has a very high turnover of staff.  They also overmedicated me.  I luckily had a friend point this out to me.  Snowing me with medication was not a good solution, and it slowed my recovery.

For me to move forward, I needed to feel the pain I was feeling and move through it.  Taking a pill for depression and anxiety is not a fix.  Sometimes medication is needed, but overmedicating patients isn’t acceptable. Patients who live with anxiety and depression and/or who are recovering from trauma need to develop skills and foster their strengths to function fully.

I am very fortunate to have a circle of friends who care deeply about us.  One of my closest friends is a social worker who pointed me in the direction of Dr. Ross Greene’s, Collaborative Problem Solving (CPS).  I changed from a traditional consequence-based way of disciplining my children to listening to them, and looking at why they behave the way they do.  With this approach, I have been able to help them develop skills.   Attachment Regulation and Competency (ARC) is a trauma informed treatment approach (similar to CPS) that is beginning to be implemented in the Lowell area.  When working with children with mental health and behavior issues it is important to focus on building their skills and self-esteem.

My family continues to work on managing emotions.  We have had to work on accepting that sometimes emotions are not fun.  The zones of regulation have been helpful for teaching my children to identify what they are feeling and assess what they can do to calm themselves down.

There have been times when I have thought I couldn’t manage the job I was given, parenting two high needs kiddos.  When one of my children was younger, they had a habit of running off, and both children had explosive outbursts.   There have been very challenging moments where my friends and community support have been all that has gotten me through.

There was a time that I thought my history of depression made a less qualified parent.   I realize now that my own trauma history and my struggle with depression make me the best qualified person to raise my children.  No one else will love them, empathize with them, or fight for them the way that I do.   I luckily was reminded that the one thing that correlates with children recovering from trauma is their having one constant person who loves them.

There are times that all we can do as parents is put one foot in front of the other, slowly pushing forward.  We need to cut ourselves some slack and accept that we are not going to be perfect.  All we can do is our best.  We can learn from our own trauma experiences and give our children the best life we can!

Christle Roberts is the mother of two children with complicated needs.  When she is not parenting, she loves to crochet, knit, cook, and teach English Speakers of Other Languages (ESOL).   She hopes that sharing her story will help other parents who are raising high needs children.  

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Alternative facts, fake truths and mental health: are you kidding me?

September 24th, 2018

When my son was 8 years old, his psychiatrist taught me to say, “My eyes don’t see that, honey.”   I said it when he confused his imagination and reality.  I said it when he wasn’t sure what was real.  I said it when he needed to know what was rock solid actuality and what was not.

His uncertainty about what was real had begun when he was in preschool.  Some days I would pick him up and he’d ask me to sing a song we had learned together in preschool class.  I’d say, “I wasn’t there, remember?”  He’d think for a minute, and sometimes he’d agree.  But not always.  It was cute but also a little worrisome in its frequency and his intensity about it.  It didn’t go away as he got older.  It simply changed into different forms.

He would insist that he personally knew characters in cartoons or on television.  He was quite sure he had lived events he’d only heard about.  Then came the day when the numbers on his math paper turned into piranhas swimming on the page.  It terrified him so much, he couldn’t touch the desk. He was eight.

He was a little boy with a big, scary mental health problem.  Sometimes the doctors said it was psychosis, sometimes they said it was mania.  Some even said he had a vivid imagination, but they stopped saying that after a few months.

He needed the people he trusted to say that, “No, there is no monster with one eye looking at us. That must be your eyes seeing things I don’t see.”  He needed people he loved to say, “That villain in the movie did not appear in the living room.”  Instead, I said that the villain was not allowed to leave the movie screen. He needed certainty and unshakable facts.  Without them, his fear and anxiety paralyzed or incapacitated him.

I never knew when a fact had to be verified for him and verified in the exact same way.  But I got good at it, keeping it simple with no embellishments.  I got good at telling him that the truth was the truth just as moms everywhere do.  Except we weren’t talking about little white lies that a child might tell, we were talking about something far more important.  He needed my certainty to become his so he could trust his world that day.  We all got on the same page on this, his teachers, his therapist, his doctor and his family. Without that, his anxiety zoomed to the stratosphere.

Not long ago, I saw someone I know on a national television show.  She has a brother with schizophrenia and yet she talked about alternative facts as if they were a thing.  A real live, acceptable, incontrovertible thing.  I looked at the television screen dumbfounded.  Yet, it’s easy to let terms like “alternative facts” or “fake” or “fake news” slip by us with an eye roll or shake of the head.  Or let them weasel their way into our vocabulary, like the person I saw on television.

Parents of children with emotional and mental health issues live with uncertainty and ambiguity every day.  We don’t know when our child opens his eyes in the morning how the day will go.  We don’t know if this service will actually work or that treatment will make a real difference.  We chafe against this kind of uncertainty but we learn to accept it (mostly) as part of our everyday life.

But we need all the knowledge, statistics and facts we can get. We hang on to them as we build our new normal.  We learn to discern true expertise and, when we find it, we are thrilled by it.  We might not always agree with it, but we respect it and are glad it’s there.  We don’t heap scorn or contempt on it as if it’s ‘only’ someone’s opinion, say about climate change or the value of a work of art.  We know that expertise is a close cousin to facts, yet not quite the same since it has the expert’s perspective woven into it.  That’s okay since we have our point of view too.

I’ve always been a huge believer in telling the truth even when it’s hard, inconvenient or unpopular. After my son began having problems I realized his mental health and his ability to trust depended mightily on it.  I also came to understand that my expertise was built on a combination of hard won knowledge and experience. There is a lot of value in both my expertise and the experts we rely on to provide care.

Truth is not negotiable for me or my son.  It shouldn’t be negotiable for any of us.  There isn’t any alternative.

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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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