Tag Archives: transition age youth

Why do we still say the same things to transition age youth?

July 18th, 2017

My then-17 year old son went to bed the night before his birthday and woke up an adult the next morning.  At least that’s what everyone told him.  Neither of us could see too many differences.  We had often played a game about birthdays while he was growing up.  Just before his 8th birthday he said, “When I’m 8, I am going to like sprinkled cheese on my spaghetti.”  And he was sure, (picky eater that he was) that he would and, so he did. Before he turned 12, he told me, “When I’m 12, I will get over my fear of roller coasters.” And he was determined and made that happen.  I’m still not sure how.

Turning 18 was different.  He couldn’t declare, “When I’m 18, I will have all the skills and knowledge to make my life happy and be able to navigate the mental health system to boot.”  Just because someone proclaimed him an adult, he didn’t actually have all the wisdom and tools he needed.  Because he had a mental illness, there was a lot to know, a lot to manage and a lot of complicated decisions to make.  Saying, “When I’m 18….” didn’t make that happen, whether he said it or a provider said it.

Yet, lots of the time the people working with young adults tell them things like, “You’re 18 now and can make that decision for yourself, “ or “You don’t have to share this information with your mom or dad.”

The Pew Research Center has a lot of data about millennials (ages 18 to 36).  36% are living at home and 59% get financial support from their parents.  Only 25% are married (compared with 30% in 2007) and 48% say their parents most influence their voting.  They account for 20% of all same sex couples in America and 74% say they appreciate the way other cultures impact the American way of life.

Kind of an interesting group, aren’t they?  This data includes all millennials, whether they have mental health issues or not.  Here is what the norms for their age group are not: to get out of the house at age 18, find a spouse, start a family and don’t listen to others.  Yet, in the mental health world, that is often the party line.  Our young people are provided with a version of “normal” that’s often based on outdated data.  Wouldn’t it be great if our starting point was what is “normal” for this generation and then individualize that?

I really like the data on how many young adults say their parents influence their voting.  My son and I have lively conversations about the ballot questions each election. They’ve ranged from charter schools, to humane treatment for animals to “death with dignity.” This last election he had strong opinions on marijuana legalization, but he wanted to hear mine, too.  I don’t think I changed his voting but he got better explaining his stance the more we talked.

We live in a complicated world.  My father carried around cash most of the time and he pretty much knew where each dollar went.  It was visual and even tactile – he could see and feel it being spent.  My son’s bank account, on the other hand, got hacked recently.  Some unknown person went into his account and withdrew and withdrew until everything was gone.  He knew what to do because we’ve talked about and rehearsed this kind of thing before (did a walk through on something minor)  and he went to his bank and filled out fraud forms.  But he needed to get that knowledge before he could perform the action.  This is true for most young people.

Parents can – and usually do – take on a lot of roles.  We can be insurance advocates, emotional supporters, medical historians, the local ATM, encyclopedias, life coaches, navigators, experts on benefits and often, advice givers.  Some of us are better at some of those roles than others.  We can also tailor the information and help to our child, because we’ve been doing it for a long time.  What I don’t get is why many who  support young adults don’t automatically assume that parents have some pretty good stuff to offer.   If you find out they don’t, take it from there.  But don’t make that your starting point. Parents can have a variety of roles which is not pointed out often enough.

When my son turned 18, I asked him what roles he wanted me to play.  He hated the idea of having to call insurance for a prior authorization.  He liked the idea of being in charge of his treatment, but having me on speed dial for medical history (yes, I still have a list of all the meds he’s tried).  This was our conversation, not one with providers, though it could have been.  We made it clear for ourselves where we wanted to start and we agreed that not everyone knows everything they need to know.  And that’s okay.

It never goes smoothly.  There were times when I was bossy and times when he was determined to reject help.  There were times when we both couldn’t figure it out.  There were times when I had a hard time giving up my old roles and there were times he didn’t want to take on any new ones.

We kept figuring it out and still are.  What made it harder were the times his providers said, “You don’t have to talk to your mom” or “You need to make this decision,” without asking him if he wanted it that way and letting it be okay whatever he chose.  Young people with mental health needs become independent, but their path can be full of curves, needing comfort one day and distance the next.   It might include getting advice and support from their parents, just like the rest of their generation.  Nothing wrong with that.

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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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Reaching Out

April 27th, 2015

rowofkidsReaching out and helping youth and young adults is very important. To give us attention shows us that you really care. Reaching out and helping is one of the best things that anybody can do. Look at all the trouble that happens to youth on the streets every day or that’s caused by youth and young adults.  We search for support with our actions. We speak out to you with no answer. It’s our cry for help.

I am amongst the youth and have done things in the past in an attempt for attention and support. I have set fires and even fought at school. I’ve been to different programs in three different systems. I stuck with a few programs for a while but eventually ran or decided they were not for me. One program has been helping me for five years now. I think they will always be there for me.

I have been going to PPAL and Youth MOVE for five years. It is a wonderful placed to go that reaches out to you. They talk to you, ask you how you’re doing, and offer you help whenever they can. PPAL has helped me a lot. Helped with things such as getting my ID, helping me find a job, and given me people I can talk to.  PPAL has groups every week for youth and young adults. It’s a good place to talk because it’s not run by doctors or people sitting in the corner with a clipboard, it is just youth talking to each other. We have dinner together. I can also hang out with other youth and young adults that are around my age group and listen to their experiences. I can get feedback about how I can deal with some of my experiences in the past or even problems I have now.

Before coming to PPAL I was really scared to talk about anything and when I opened my gates and started talking, I felt so much better. I began coming constantly and kept getting support emotionally and now I help as well. I help set up the groups and run parts of the meetings. Sometimes I stay away for a while and am worried about going back. I worry about how I might be judged. PPAL doesn’t judge me for why I was away. They welcome me back and help me get back on track. They offer to help.

I am a troubled youth just like a lot of youth. Many of us feel alone and like we have it the worst, but you are not alone. Talk to somebody. Open up. You might find somebody who is reaching out to you. I can personally say that a lot of people at PPAL know what they are talking about. We don’t fake it. We know how you feel. We will help.

 

This blog was written by a 19-year-old young adult member of Youth MOVE Massachusetts. They have lived experience in mental health, child welfare, and juvenile justice systems. Their strengths include leadership skills and writing poetry to name just two.

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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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Same law, divergent practice. Why is that?

February 19th, 2015

files-and-foldersLast week a friend described a recent visit to her home by an emergency medical team. Her 20 year old daughter, who lives at home, has a longstanding heart condition. Her treatment wasn’t working, she needed emergency medical help and a decision about inpatient care. Upon the arrival of the emergency team, they consulted with my friend, gathering information about when her daughter had eaten, if she’d taken her medication, what symptoms she’d shown and so on. They considered this good medical practice and so did she. In fact, so did her daughter, maybe in part because she’d always been told that this was the best way to make sure she got the most effective care.

But that’s not the way it goes in the mental health world.

When another friend, this one with a 19 year old son who has bipolar disorder, called the mobile crisis (mental health) team, her experience was vastly different. They arrived at her house and told her, “We can’t talk to you.“ They refused to hear that her son had discontinued his medications the week before or that he was barely sleeping or even that he was threatening suicide. Instead, they interviewed her son, who argued that he was fine. After they left, her son slammed out of the house and was picked up by the police a few hours later. “Why didn’t you tell them what was going on with me?” he asked his mother. “None of this would have happened.”

There is a federal law in this land called HIPAA or the Health Insurance Portability and Accountability Act of 1996. HIPAA protects the privacy of our health information in all its forms (verbal, written, electronic) and mandates that providers of care, payers of care (insurers) and health care clearinghouses comply with it. HIPAA also gives us all rights – the right to see, access and correct our medical records and to decide to share or not share our health information. Overall, HIPAA is a important law that ensures our privacy. Before it was enacted, some doctors and pharmacies sold patient lists to pharmaceutical companies. In Florida one disgruntled public health worker sent the names of more than 4,000 people who tested positive for HIV to two newspapers.

But HIPAA seems to play out differently for young people with mental health needs and those with medical conditions. That difference in practice has an enormous impact on families, especially those where young people are living at home.

Today, record numbers of young adults are living at home with their parents. That includes young people with mental health needs like my friend whose son is 19. Data from 2012 shows that more than 32% of young adults 18 to 34 are living at home. A lot has been written about how young people (18 to 29) are generally taking longer to grow up and neuroscience tells us the part of the brain which affects planning and decision-making is not mature until the mid-20s. What’s also important is that young adults have a strong instinct to push against authority and forge their own way. What we end up with is a perfect storm consisting of the need to make good treatment choices, a still developing brain and a desire to push back against anyone telling them what to do.

Now add a discussion of rights into the mix. Once young people become 18 – and sometimes before that – many conversations about mental health care seems to begin with a discussion of their rights. They often hear they have the right to keep information private, refrain from consulting parents or other family members about health decisions and the right to refuse treatment. Unlike my friend’s daughter with a heart condition, they usually don’t hear that involving their parents and others can help get them better care. I used to think the goal was to make good medical and mental health decisions. Sometimes you would think that that was not true; that instead the goal is to make decisions bereft of the input of family and friends.

When my son was 19, he needed an adult primary care physician, a transition many parents dread. The one person who has known your child since infancy is replaced by stranger who you hope will care just as much. I went on the web, found 3 doctors that met his criteria – male and under 40 – and I called each one (with my phone on speakerphone) to see who was comfortable with serious mental illness. We debated and my son chose one and made an appointment. After some discussion we agreed that I would be there to share the family history, then he would finish the appointment. It worked out well. When his mental health problems are acute, my son needs someone to help figure out what might work since his critical thinking skills go out the window. Sure, the line can be a thin one between making the decision for him and laying out the options. But parenting teens and young adults is often about walking a fine line. Parents get pretty good at it.

Last year the U.S. Department of Health and Human Services clarified that HIPAA does not cut off communication between health care providers and the families and friends of patients. In their online guide it is clear that health care providers do not have to unnecessarily withhold a patient’s health information from their family or others involved in their care. The caveat is that this guideline applies only if the patient (read young person) does not object. When we talk about communication between providers and a young adult’s parents, is our starting point going to be a recital of your right to decide by yourself (or refuse treatment) or is it a discussion of the way to get the best care and support?

Knowing when to stand alone on your own and when to accept help comes with experience. We’ve all let someone else talk us into something we weren’t comfortable with or simply confirm what we already knew. We’ve also had the experience of feeling like you know just the right thing to choose without help. We usually have a default that works for us – some combination of asking others to help us or pulling up the drawbridge until we are ready to listen. For decisions where the stakes are high, such as making a choice about crucial care, most of us consult with those who know us best. HIPAA isn’t supposed to prevent this. Why can’t mental health providers see that?

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