Tag Archives: family support

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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Transition

November 6th, 2017

It still takes me by surprise when my now-young-adult children have been doing wonderful for weeks and months and then all of a sudden the signs start showing. Showers not happening, slow and fast speech and maybe a change in routine of medication or daily activities. As the parent I see this and sometimes it takes me a week or two to know that “the change” is happening. Mental health symptoms coming on strong and can be hard to catch.  They are also not wanted.

Sometimes I’ve taken a break from needing mental health support.  We might have had a break from therapy, hospital visits or even needing provider and state support. But when the change happens you need family and friends by your side.

This is when I reach out to the supports – friends, family, and providers. I get the push back from providers every time saying,” your son is independent and his IAP (Individualized Action Plan) has already been written so we can’t do anything else.” Really? What happened to the days and times that providers would just do what individuals needed to keep them healthy? That is really what is needed. Community includes the parents, the family and the family friends. We do not get paid to take and love our young adult.  We see them as family.

As my son would reach out and show signs of needing hospitalization for hallucinations and ongoing voices and fear, I would call the supports to get the TEAM on the same page. The team did not respond to what I thought or my son felt was needed.  Instead it was , Let’s try to keep him in the community. Really, again? I wonder if they realize that when my son and I advocated for the hospitalization it was a for a tune-up to make life stable and better for 3 more years. I am known asking for people to tell me I am right, and sometimes they don’t.  But really I am looking for people to work with us as a team.

My adult children grow and understand themselves even more.  Independence is exactly what we would like to have with our children. It really is a quality of stability and supports that we want our children to know how to gain for themselves. Whether young adults have CBFS or case management, there are many young adults with parents/caregivers that continue to get the calls from their adult children.

Recently, I was asked by a provider to please make sure my voicemail box was empty. I explained that I empty it two times a day but sometimes with two young adults who call me with their challenges it isn’t easy. This happened at a time that both of them were having struggles and using one of the best coping strategies they have.  That was to call my voicemail only to hear my voice so that they would be ok.

I have also been asked why I continue to meet them weekly as it really isn’t needed anymore.  I want to explain in my family I talk to my mom every morning and prior to that, I also talked to my grandfather daily. I have several friends in the community that do not have children like mine and talk to their child daily. So why are my children different? If anything shouldn’t they have normal happenings and opportunities?

I am working with the my children to be independent and what I need is for the people that get funded with the state dollars as providers, and state systems, to work with me to teach skills like cooking, budgeting, social opporutinies, transportation, how to drive, how to work out things on their own. I am hoping for them to be able to live – and not call 30 times a day because they have skills so I do not have to figure it out with them.

When I ran a group home in my 20s for adults with developmental delays, we took every opportunity to teach to include, to model, to reinforce.  In the Transition Age World we need to teach, model, and repeat skills – instead of allowing people to sleep, be depressed and refuse to do anything just because they have rights.  They have the right to learn and be empowered! Let’s work together as a team to make that happen.

Do you want young adults to add to society, feel good about themselves and help someone else? The time is now to change programming, supports and activities to be right- make a change!

Meri Viano is our guest blogger.  She is the parent of two sons and a daughter who continue to inspire her blog posts.

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Random thoughts from a loud black woman

June 4th, 2017

It seems that it’s always a white person who is asking me about my views on race, racism, culture and disparity.  Today that question was posed to me by a black person and although I gave my usual answer, “my culture is my community”, today for the first time in a very long time,  I am giving some real thought to how race(ism) affects the work that I do in my community (my culture)

Although my standard answer is truth and what I believe, I had to think about where this response is coming from.  Not answering for every black woman or person of color has something to do with it. I personally have experienced racism and disparity in health care. It was very difficult for me and my family to accept and yes, I did do something about it. But when I talk about my personal experience, how does this help others? Am I only sharing my experience because it happened to me or am I sharing because it helps others? Did my reaction to my own situation help others? Of course I’ve thought if this happened to me, imagine how many others it’s happened to and what did they do about it?

Another reason I may be hesitant to speak loudly on this issue is because when working with so many disadvantaged  families over the years,  I fear I have become so accustomed to the disparity that all families of children with mental health issues face (distressed children= beached whale) that I have become desensitized to  my own ethnic group.

I’ve also experienced racism in other areas of my life, for example at the store and on the job.  But is this different from health care disparity? Do I have a problem talking about racism I’ve encountered in these environments? When I talk about these incidents, do I speak for myself or for a group of people?

I think the response lies in the role I am in when the question is asked. I have become mindful of not speaking for a whole group, the difference between being an ally or an advocate. Today I was reminded of the power of support. I am not the only black woman or parent of color who has experienced racism or disparity in health care. It is okay to speak on behalf of others who have experienced the same.  I spend a lot of my time teaching parents how to advocate for themselves and subconsciously, I believe I do spend more time teaching parents of color not only how to advocate for themselves, but what it means to be an ally.

So bottom line is this:  Yes, racism and a lack of cultural competency does impact families of color when it comes to accessing mental health services. Black families are not treated with the same respect, our expertise as parents is not valued; we are often treated as hostile vs passionate and negative assumptions are made about our social-economic status and level of education. These statements I have just made are based on fact; personal experience and relayed to me by other African American families in my community. True, many families face these same adversaries’, but for black families it is different because it is not personal, it is prejudice.

What do we do about it?  Training in cultural competency is one thing, but to be culturally comfortable is a life style.  Providers need to be comfortable in any environment. They need to be comfortable speaking to, with and among families of color the same as they would with their peers. Let’s not make excuses such as “I don’t see color” but rather acknowledge differences and respect those differences. Instead of being insulted by my language or lack of, learn what the words I speak mean, just like I learned yours.  Don’t assume my mannerisms are ignorant, accept that they are mine. Don’t dismiss my knowledge; my education may not be as rich as yours but I am educated.

Dalene Basden has been a PAL Family Support Specialist in Lynn since 1998.  She is the parent of two boys, both of whom have mental health challenges. Affectionately called Noni by many in her community, she prides herself for being known  as that loud Black woman. 

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