Tag Archives: family support

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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Everyone needs a posse of parent warriors

April 23rd, 2017

Somehow, you can never escape the influence of your mother.  Yet, sometimes you don’t see it for a long while, especially if it shows up in a different context.  Often, in fact, both the influencing and not-seeing can be a very good thing.

My mother believed in the solace and wisdom of other women, especially other mothers.  She grew up in a generation where woman shared secrets-that-weren’t-secrets only with each other, like whether you colored or permed your hair.  Women always went to the ladies room in twos or more in public places and spoke in low voices about “women’s problems.”  She had a group of women friends, kind of a posse, who knew each other for a long time.  Among this group, if there were child-rearing, marital, drinking, health or other issues, those too were shared and kept quiet about.  Besides this group, her sisters were her most precious resource, keeping family connections and, sometimes family secrets, intact.

Although I thought it was silly and even wrong, this secret keeping cast its shadow for a long while.  I was uncomfortable talking about things that were personal, claiming that respect for privacy was the only thing that motivated me.  Once, I came down to breakfast in my college dorm, to find two friends arguing hotly about the merits of Clairol versus L’Oreal hair color.  I put down my food and was quiet for a while, not joining in, not knowing why.

But I believed in the importance of a posse, a group that you could trust and seek out for their knowledge and comfort.  I believed in the value of other mothers.

Then my older son got sick.  He was only in first grade when we emotionally fell off a cliff.  He went from being an anxious child to one who was hurting himself in a few short months.  There was no mistaking that we were the family dealing with significant mental health issues.  Some of my friends drifted away, others stayed but were bewildered.  Still others offered help, advice, a listening ear and most of all the knowledge that whatever I shared, our privacy would be respected.  I found I needed that, because it gave me some space to try and understand how my life was changing and search for a new equilibrium.  It wasn’t secret keeping exactly, but my close friends closed ranks and I felt a little safer, more protected.

I needed that feeling of safety, trust and comfort the first couple of years of my son’s illness.  Like many parents whose children have mental health issues, my life often felt like it was in freefall.  If we planned an outing, it was tentative, making sure my son was okay minutes before we left, so that he could manage without being overwhelmed.  If not, we changed our plans. Heck, if I planned a meal, I never quite knew if we could make it through the entire thing or if there would be a meltdown.  Uncertainty became my daily companion.  Sometimes there were good stretches but there were lots of time when the school would call, his meds would suddenly stop working or he’d develop new fears, obsessions or even frightening behaviors.  I alternated between changing my battle plan to throwing my hands up in surrender.  There were few spaces where I felt like someone had my back.

Then one day came when I started talking about my son’s struggles as well as my own experiences complete with triumphs and disasters.  First I talked at a support group I attended and later in a support group I ran.  Other parents commiserated, cheered me on and never judged.  We would often continue our conversations in the parking lot, treasuring the sharing.  One mom, Theresa, had a son with a mood disorder, who was also using substances.  He was unpredictable and sometimes stole cash from her wallet.  She’d been widowed a few years before, about the same time her son began showing symptoms of bipolar disorder.  Her family thought she’d indulged him too much after losing his dad and that she should have thrown off her own grief earlier.  Theresa would come into the group and pour out her heart and her shoulders would relax, her face would open up and she’d feel the power of the posse. Dave, whose son had ADHD and was going through a difficult divorce, would come week after week, not saying much, but listening hard, nodding often and brought little bakery gifts.  It was his posse, too.

Motivational speaker Jim Rohn says, “You are the average of the five people you spend the most time with.”  Sometimes that’s family, but often it’s your group of friends. Your posse can have a big influence on how you feel, what you think and even what steps you take.  The people in it can support you and believe in you, but they can also shake their heads at you and nudge you in a different direction.  It’s not a rubber stamp, letting you off the hook.

Today my posse is filled with parent warriors.  They are advocates and influencers, passionate and strong.  They give me support, challenge me and believe that we can make a difference in children’s mental health for our families and lots of others.  I believe in them, too, and am sure they are right.

My son is an adult now, still dealing (mostly successfully) with his mental health symptoms and he’s doing okay.  But that wouldn’t be true without years of advocacy on my part and the part of others.  I wouldn’t have been able to push, to share my stories publicly and keep going without my posse of parent warriors.  Nobody does this alone.  My mom was right about that.

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