Tag Archives: family involvement

Residential: It will never be home

May 25th, 2015

boy listening to musicResidential was four years of my life. It was a place where I had to lay my head at night. It’s not a home and it’s not my home. It’s a place I had to be to get some help. They called it treatment. But I called it help. I was 12 years old when I walked in there and 17 years old when it ended. The hardest part for me was feeling like I lost my family.

It was not easy living in a place that had strict rules given to you by multiple staff. Some gave you the rules stronger and some safer than others. It was hard getting to know all the roommates, the clinicians, teachers, doctors, staff and new house mates. It was hard getting to know the other “clients.” That’s what they called us: the “clients.” I hated being called that.

They told me that I was going home to visit. I really hated that. Home is not a place you visit – it is your home. There were things that over time I figured how to teach them to change. You have to understand I was one of the only kids that had a parent that came to visit me again and again. Others had social workers, probation, or agency people. I was different. I had a parent.

You get the hang of it when you live there long enough. You learn which staff like you, what teachers believe in you and which ones drive you nuts. Everybody thinks that going to a residential is a bad thing. Personally, it was what helped me get help. I was able to deal with my emotions, deal with my trauma and deal with my parent. I learned how to connect. We both learned to be honest with each other. We both had to work hard, but we needed people that would work with us too.

I had a ton of hospitalizations before residential. I had run-ins with the police. Residential was much better than getting locked up. I needed residential. I was angry at first for sure. I was lonely, scared and felt alone. One important thing that I learned was how to talk about my experience with others such as clinicians and staff so that they could learn how to help other kids and families. I feel there were a few things that made it work for me. These are the top six.

1. My parent could visit anytime.
2. My psychiatrist listened to me about what I thought I needed.
3. I was given outside walks and time to move when I needed it.
4. My siblings were treated with support. They could come visit me anytime too.
5. There were no specific times for phone calls — when I needed to make one I got the chance.
6. I had the same clinician at the residential, at my home and with my siblings.

If you are a professional working with kids, remember that you are their support for a bit. But you are not their family.

If you are a parent, don’t give up on your kids. Keep trying and be sure to visit and call often.

If you are a kid that needs help, remember you can do it. Just take care of you and you will make it. I didn’t think I was going to make it but I did and so can you.

Our guest blogger is a young adult who experienced residential treatment and wanted to share that experience anonymously with others.

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Don’t call me an adult ally, I’m a parent. Always was, always will be.

May 3rd, 2015

Mother and teenage sonOne day, 17 years and 364 days after his or her birth, your child goes to bed and wakes up the next morning a legal adult. You have a party (okay, maybe just a cake), give presents and feel a flutter of anxiety in your stomach. For many young people, being 18 doesn’t mean much these days. They can vote, sign a contract and register for the draft. They have already been able to drive a car, see an NR-17 movie or consent to sex for at least a year. They have to wait until age 21 to legally drink, purchase a firearm or adopt a child. But if your son or daughter has mental health needs, when they turn 18 you are relegated to a special category. Now you are an adult ally.

Yes, that’s right. When your child went to bed, still age 17, you were a parent. But when they woke up as a young adult, your status changed to adult ally. Or in some mental health circles, that is what the current thinking is. Adult allies, the definition says, partner with young adults, view them as valuable resources and ensure they can speak up and participate.

However, parents are parents and have a completely unique role in their children’s lives. It’s part of parenting to try to balance how we support, interfere, teach, back away or say we are proud, disappointed or relieved. Sometimes we get it right and sometimes we don’t. But that’s part of it, too – learning, adjusting, making mistakes and doing it better. No one gets a handbook as if your child is an appliance; there’s an art to parenting that simply cannot be captured precisely.

Sometimes it’s your job as a parent to be the “not-ally.” Instead of allying, you disagree with your son or daughter. It’s learning how to do it while respecting their right to make mistakes and being clear that you disagree with their decision or position, but still love them. That’s the trick. Like all skills, this takes practice.

But there is another reason to choose words that describe the parent role carefully. Parents know how they feel when certain terms are used. Some words make us feel respected while others feel derogatory. Some terms take away power while others make us feel powerful. Describing a family as dysfunctional, for instance, robs parents of their strengths. They feel judged, unworthy and unable to change that perception. On the other hand, when a family is described as a “resource” for their child or a “strong” family, they feel empowered and valued. Unfortunately, lumping parents into a category of adult allies shifts us out of a unique role and into one that limits us.

Not long ago, I told a colleague of mine, who has children in elementary school, about this idea that parents become an adult ally. She listened to me in disbelief and said, “I put my heart, soul, time and money into my children in a way that only parents can. If someone told me that I am suddenly not a parent, but an adult ally, I would be pissed.” When she heard this term she felt it lessened her role, not enhanced it.

There were days and weeks while my son was transitioning to young adulthood (we are on the far side of that now) when I would have happily relinquished my role as a parent to become an adult ally. It would have been far less demanding and a much clearer role. But what he needed was a parent, someone who had known him forever and knew his strengths and foibles. I would say things like, “That sounds great. You are a hands-on learner and this would work for you.” I’d also say things like, “That makes me worried. Sounds like you are putting yourself in harm’s way. ” Sometimes he’d agree and other times he would think I was wrong. But we’d talk it through together, because that’s our mother son relationship. Sometimes the conversations were heated or exhausting but they worked for us.

When providers, emergency services and mental health providers ignore parents of young adults, it can send a message. When adult mental health systems exclude family involvement, that message is even stronger. The message I hear when this happens is, We don’t value parents and family involvement. If I am hearing it, my son or daughter probably is as well. Sure, there are privacy concerns and it’s important that young adults learn to take the lead in treatment and life decisions. But they may not want to do that every time. Sometimes we all need a team and parents can be valuable team members.

Other adults in a young person’s life should be encouraged to be an ally. The Free Child Project encourages adults to be “allies to young people when they work with, connect, partner, and unite with young people in personal relationships.” They encourage adults to take on a partnership and support role and offer guidelines to do it well. But parents are not just any old adult. They are the only ones who can do all the things only parents can do. Why would we want to prune their role and stuff it into this thing called adult ally?

There has been a lot of recent attention, research and thinking about young people who are transitioning to adulthood. We understand better that the prefrontal cortex of the brain doesn’t fully mature until the mid-20s. We now understand that transition is a unique time between adolescence and adulthood. And so, the thinking goes, if this is a unique time, then parents should behave in unique ways. But is that true? Should we just be version 2.0 or 15.0 of the parent we’ve always been?

I am not saying it’s easy to figure out your role when your child turns 18. It’s not. But it doesn’t easily fit into a slot either. Sometimes you are an ally and sometimes you’re the one saying, “Wait a minute here. “ Sometimes you are amazed and astounded at what your child knows and sometimes you shake your head and say, “Really, that’s your decision? Okaaaaaay.” We used to call this a generational gap but it’s more like an experience gap. Our experiences change how we look at things. It can make us cautious or cynical. Youth can have a fresh perspective. We sometimes have to remind ourselves how wonderful that is.

There is room at the table for many voices. Those voices change in tone, in volume and in how often they speak. Transition to adulthood is a time when that happens. As parents, we learn to be less the authority and more the coach or mentor. Sometimes we are not either one but simply the observer until we are asked to participate. That’s okay; that’s what all parents have to learn. What’s different for parents of young people with emotional and behavioral challenges is that we have to learn to set our anxiety or need to impact the outcome to one side and have faith our son or daughter will be okay. My father used to say, “You can’t learn to ice skate without falling down.” We need to believe it’s okay for them to fall down and just be there, when needed, after the fall. That’s what parents are for.

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How PPAL has Helped Me

March 4th, 2015

leaveshouseI know that Youth MOVE and PPAL are specified as a non-therapeutic group. That is because clinicians are not allowed to attend the groups or meetings. There is no therapy involved, yet they have helped me through a lot. They gave me a place to go when times were tough. I looked forward to going to the Youth Groups and attending the conference each year. That was possibly the only thing that kept me looking forward.

I’ve been home schooled for the past 2 years of my life because of issues with bullying. I remember being so afraid the first time Lydia and my sister Bella, also an intern, talked me into going to one of the youth groups. I hadn’t been close to kids around my age for awhile. I remember saying to Lydia that I was too scared and shy to be there.  Their exact words to me were, “Oh good, you’ll fit right in!” So with that I went into that youth room scared out of my mind but came out a completely different person.
I started to get excited to go to group each week! If I missed one on my own accord I’d feel bad – like my week wasn’t completed. It gave me a sense of hope in myself. I thought I’d never get to go into a place with other teens and come out alive. Without PPAL I may never had been able to fully go to a place surrounded by people and actually feel safe.

I started my internship at the age of 13.  I was glad I could be a help to the staff there. Lydia, Meri, Britt, Beth, Chandra, Pawel and others are all like a family to me. I’d gladly spend more time at the office than sitting around at home! I did simple things such as fold brochures, set up the room for group, make copies, clean up after group, and yet I was always thanked with so much enthusiasm.  It was nice to finally have something to do and I actually felt useful for the first time in a long while.

The main way PPAL has helped me is the support they have given me. I was able to pick myself back up thanks to the support I got from PPAL and Youth M.O.V.E.  I never could’ve accomplished so much without knowing that they were right there cheering me on.  Also, another important fact is they provided a place to go to get out of my house.  So to those whom it may concern, I do not go to the group for the pizza. I don’t even really like pizza. I go to see the family I have made there.

Ally C is an 8th grade student from Worcester, MA. She has been writing since a young age. Some of her hobbies include writing poetry and drawing. This is her first blog for PPAL.

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You know it when you see it

October 10th, 2014

hands2When my son was 9, we had our first in home therapist.  This was a brand spanking new idea at the time so we could– and did — invent the service as we went along.  My son had had 6 hospitalizations, tried 20-something combinations of medications and gone to countless outpatient visits at that point.  Some of these treatments were quite successful — for a while.  Some were pretty ineffective.  But it was all the system had to offer and all my insurance would pay for.  I used to grumble that our choices were inpatient, outpatient and see-you-later-alligator.

Then we were offered this new thing — someone who would come to my house and work with all of us — my son, me and his brother.  What a concept.

Ian was a social worker cast from a different mold.  He talked about his own experiences when it seemed important or to build common ground.  He suggested new approaches and things to try based on his observations and sometimes, his best guess.  He listened to my ideas (herbal supplements, meditation tapes, yelling at ‘the voices’) and helped me implement them. He didn’t insult me by suggesting star charts or baffle me with gobbledegook.  Instead, he partnered.  He shared, he asked and he listened.  He was respectful and interested.  He wasn’t afraid to admit to bad ideas and applaud the ones that worked.  He was eager to hear about resources I found and learn about strategies that were new to him.

In short, he really and truly partnered.  He wasn’t the leader and me the sidekick.  He wasn’t the expert (though his expertise was wonderful) and me the learner.  It was clear from the start that we were doing this together.

Several years ago, when the children’s mental health world talked about partnering with families, we focused on defining what the family member would need in order to be a good partner.  We worked to ensure that their voices were heard and their participation was supported.  The word was out: families were welcomed, accommodated, included and recruited.  We changed the environment and the team composition. But here’s the catch.  Parents have always come to the table–whether it’s the treatment, IEP or policy table–and they always worry they might feel blamed or mistrusted or seen as unsuccessful (what parent has not been unsuccessful?).   Being included is not being asked to partner.  In order to partner, a parent has to feel they have a meaningful impact, not just  a role. Parents can’t make that happen by themselves.

What hasn’t been done so well is define what the professional, the provider, the state agency person (or whoever it is) looks like when they partner.  Some, like Ian, know how to do it and do it right.  For others, it’s not easy or intuitive.

There are a lot of ways to define partnering and to measure it.  One of the best lists I’ve seen is from Brian O’Neill at the National Park Service. In his 21 Partnership Success Factors he notes that partnership needs to be a way of thinking that includes trust, leaving your ego at the door and respecting the right to disagree.

We talk about systems partners and family partners.  We discuss parents partnering in primary care, behavioral health and education.  But while the frameworks have grown and the opportunities are there, we have a long way to go.

A lot of the partnering we do comes from a head space, a thinking space; somewhere made of definitions and verbal structures.  But it’s not something we experience from the outside looking in.  It comes from trust and from hope and from belief.  Trust in one another and trust in the path forward.  Hope that we can accomplish something, maybe even something small, that will amaze us, and fortify us and validate us.  And belief that even in a still-broken system and the experience of many failures that there is a near future and a far future that is better than right now.

Once you’ve been a full partner, nothing less will do.  And to be fair, it’s a more demanding role for parents too.  We have to do the work we’ve committed to even when we are tired, listen with the same respect and interest that we want in return and often stretch beyond what we thought we knew.  When we look around the table to see that parents are participants and stakeholders, we need to up our game and expect that meaningful partnerships should be the norm for all of us.

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A worthwhile way to spend a day

June 1st, 2013

people at conference 2012Friday marked the 3rd anniversary of the PPAL Conference and this year it was a celebration. More than 500 of us got together to celebrate the work we do, whether as youth or parents or professionals with our own experiences of the system from the inside. I can report that I came away completely invigorated and I can’t wait for next year.

There is power in a room full of people pulling in the same direction. When I was growing up, we hid mental health needs as much as we could. There were after school specials about cutting and teen pregnancy and health classes to tell us not to drink or smoke, but the real support for kids in crisis was pretty thin. This conference room full of people today, all there to talk about children’s mental health and family support, represents a huge change.

We go through life being told the limits of every situation, but the unofficial theme of today could have been, “Know that you are not limited as you think.” The featured presenter, Marvin Alexander, President of the Board of Directors of Youth M.O.V.E. National, shared his story of being hospitalized for the first time at seven years old. While that sounded like an inauspicious start, he stood in front of us as a mental health professional explaining the details of how youth can and should be included in their own processes. He overcame his difficult start and inspires others to do the same. In short, he made it!The keynote speaker, Fletcher Wortmann, was equally inspirational, but his style was completely different. He walked us through his battle with crippling obsessive-compulsive disorder and was emotional about admitting that he still battles. The fact that he went through a lot of treatment and still went on to graduate from Swarthmore College gives me ammunition for the families I work with who are afraid that their children will never get to college because of the mental health support they get. This young man lives with a mental illness, and is choosing to live his best life anyway.

Youth were well-represented this year. I don’t remember being as conscious of Youth M.O.V.E. at last year’s conference. Good stuff. I was reminded of one of those inspirational posters you used to see everywhere. “Don’t walk in front of me. I may not follow. Don’t walk behind me. I may not lead. Just walk beside me and be my friend.” We were reminded that we need to walk beside youth, when it comes to their mental health care.

Grace H. Scott is a Family Partner with Riverside Community Care.  Growing up, she helped hide her mother’s mental illness.  Now a mother of three herself, including one child with a complicated duel diagnosis, she does what she can to challenge the secrecy and stigma associated with mental health needs.  In that vain, she wants it known that she has Chronic Anxiety Disorder herself and has experienced depression intermittently.

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