Tag Archives: transition age youth

The imminent demise of parent voice, sort of

January 4th, 2015

Talk to the handThe other day I opened my mouth and my mother came out. This happens to most of us as parents whether we expect it or not. There are phrases that you heard over and over again as a child and you find yourself repeating them. Maybe it’s a prediction (Someday, you’ll be glad you had to say “please”), maybe it’s encouragement (You can do anything you put your mind to) or maybe it’s just the way you say “I love you” to your child. What all of them have in common is that in your family, this was parent voice. It’s passed down from generation to generation.

Parent voice became a growing part of children’s mental health services through the persistence and persuasion of parent leaders. It grew from an individual voice to a collective voice asking for a role in our child’s treatment and a seat at the governance table. Progress was slow at times and while some providers and decision-makers embraced family involvement, others said to themselves, Aren’t parents part of the problem?

The amazing thing was that parent voice incorporated what families said was important, not what others thought should be in it. (Note: it’s often called “family voice” to include grandparents, foster parents and others raising children, but it still comes from the same set of experiences.) Parents said that each family is unique and their strengths should be the centerpiece of any care plan. Parents said that they didn’t want others raising their children, even if they were in out-of-home placements. Parents said to respect their culture, their decisions and their expertise. Models such as family-driven care were developed and parents became trainers, evaluators and colleagues.

In many ways, parent voice had its heyday in the early 2000s. There were still too few services and many remained deficit based. But parent voice was recognized in many places as unique and indispensable and more and more attention was paid to it.

Most parent leaders (like me) thought that there was room for parent voice alongside adult consumer voice, youth voice, provider voice and professional perspective. We often tolerated being the token parent representative and advocated for more parents in various roles. We partnered with others who had “lived experience” to promote its value. We advocated, we collaborated and we thought we had claimed solid ground.

Initially, we argued with adult consumers, often in their 40s and 50s, who had worked to retain control of their treatment decisions, take back their strength and gain respect. Some were uneasy with parents, especially when their own parents had made decisions about their care that they felt was harmful. But we talked and found common ground. We explained that children are not little adults and do better when their parents are their advocates, their supporters and often, their voice. Parents have their own unique experiences, too, which often galvanize them into seeking changes in the system that provides services for their children.

Then along came youth voice, which we also promoted. After all, in most families you want your teen or young adult to be a critical thinker, have skills to deal with complicated systems (including behavioral health) and craft a life that has meaning and makes them happy. That’s what parents do, right? My own son used to watch and listen as I talked to his insurer or argued with his school. “I want to be as good an advocate as you are,” he would say. The original metaphor for family driven care was a van, with the parent driving behind the wheel and various professionals, educators and other providers giving directions and expert advice. Eventually, as the child grew, he or she became the student driver, then the sole driver of the car. But the parent was still there, often riding shotgun.

So what has happened to parent voice? Well, sometimes the very things we work for and want to see happen create changes in unexpected ways.

In the introduction to Family Peer to Peer Support Programs in Children’s Mental Health: A Critical Issues Guide, three types of family support are identified. They include the family partner, often seen in wraparound; paraprofessionals, who augment the role of providers; and family peer support which provides support, information and advocacy. The Guide points out that family peer support – which strengthens parent voice – is at a critical crossroads. This remains true today.

In Massachusetts, as in many states, family partner roles have grown exponentially. They are well defined and often incorporated in mental health services. Clinicians are becoming more accustomed to working with family partners (which is excellent). These roles are well defined and family partners coach and assist parents in using their family voice to help determine their child’s care. But there it ends. Here, parent voice is about individual treatment, not advocacy or systems change. Family partners are essential but they are also becoming the way we do business. They are just one perspective among many in their organizations; a note in the melody, sometimes a minor chord. We worked hard to grow the numbers of family partners but their role is not robust enough to carry parent voice into systems advocacy.

Ten years ago, youth voice was a fragile and new sound. There were a handful of youth in the public arena and no one was sure if their experiences were unique or represented hundreds of others. Family voice included parent voice and youth voice and while they weren’t the same, we were all used to that. After all, our own families included both types of voices and we somehow made it work. Organizations like mine fostered youth voice and listened in delight and awe as it grew.

In some discussions about policy and practice, youth voice is now stronger than parent voice. It is still unexpected, often unedited and startling. But there is a subtext at times that when parent and youth voice don’t align, everyone must choose which to hear and honor. It reminds me of those early times with adult consumers when we saw parent and consumer voice having too little common ground. In our families we expect different voices and each is important. The same must be true in public conversations as well.

Parents have also recounted their unique experiences in raising youth transitioning to adulthood. Sheesh, I know this one well. It’s a kind of dance with your son or daughter where you step forward to embrace and support and cha-cha backwards to create space for independence. I recently heard the phrase, “parents as adult allies” where parents were tossed in with other adults in a young adult’s life as supporters and cheerleaders. This worries me. Parents are unique in their son’s or daughter’s life. Their relationship has many layers and textures and nuances that no one else can come close to. We all have a learning period – sometimes a long one – where we find out when to offer advice, when to listen, when to be emotional and when to use your poker face. Sometimes we are allies, sometimes we aren’t. But we are always something no one else can be—parents. Parent voice needs a recognized place during transition to adulthood.

Parent voice has changed. Sometimes it is institutionalized. Sometimes it is muted. Sometimes it is seen as relevant to individual care but not needed for program design, evaluation, policy work or systems reform. Wherever we find it, we should listen. Parents continue to experience the behavioral health system in ways no one else does. Each week I talk to a parent who wants their journey and their story to mean something; to make it a little better for the parents coming after them. When I open my mouth and my mother’s voice comes out, it says “You can be anything you want to be.” Parent voice can change the world too. We need to value it enough so it does.

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Don’t let it consume you

September 19th, 2013

file0002108422738When I was in the hospital I felt very alone, in need of comfort. I had asked myself many questions and I wondered if God was forgiving or if I was going to hell. I was in a lot of pain, physically and emotionally.

The staff didn’t understand my mental illness.  I think it was either because they didn’t try or (this is what I believe) they didn’t know how it felt. The staff was pretty ignorant and mostly, thought about their paychecks, as they informed me. I do realize now how hard it is to understand someone else, but it felt so self centered.

My peers and friends made me feel better because they would be there for me. They understood me and my illness. They were like me, in a way and that really helped.

I got most of my support from my peers and friends because we were all in the same boat: we all had a lot of the same problems and experiences. The only real help I got was from them. They were the ones who got me through.

My friends understood me because we had a lot in common with one another and we could talk to each other like trustworthy friends do. We all needed each other in this scary foreign place.

What I learned in the hospital was that life had meaning. God was with me and would guide me through. You can find friends where you don’t expect to. Life has twists and turns but that is what gives it purpose. Life is worth living, it is a gift and you can choose how you use it. When people say mean things to you, it doesn’t really matter. All that matters is what you think of healing yourself — just ignore them.  And don’t let it consume you.

I learned an important lesson about people who have mental illnesses, people like me or the people I met in the hospital. We are just like everyone else and can be the best friends you’ll ever find. We don’t deserve abuse or neglect. We deserve love and understanding. We have needs and they are SPECIAL needs.

Our guest blogger, JesseRou,  is a high school student who loves sports and wants to work with animals.  She feels close to her family and connected to her religion.  She writes about her anxiety and her experiences with the hope it will help other youth.

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Lapse back into depression

April 25th, 2013

Sleeping teenI am widely known for my past experiences with mental health. Since the age of 15, I have been very outspoken about what I’ve been through, what I’ve been diagnosed with, what medications I’ve taken, what works, and what doesn’t. Everyone knows that with the help of my parents and a large support team I’ve gone through hell and back, survived and become an advocate for youth like myself who don’t feel like they have a voice. I have been told that I’m one of the lucky ones, brave, and most often, strong. These days, I feel anything but.

For the last year and a half, I’ve been battling a severe bout of depression, striving to remain resilient, but slowly sinking back into the all too familiar pit of despair that I’ve grown to hate- and woops! I’ve forgotten my ladder, so climbing right back out isn’t an option. I’ve been trying to claw my way up the hard way but without much success.

It’s not hard to discern when or why I became depressed this time around. One of my biggest supports and best friends was my father and he died unexpectedly in April 2011. Following his death, it seemed like everything fell apart- my family, my structure, my life, my sanity. For the first time in my life, I became a caretaker, as my disabled mother became my responsibilty, and I had little-if any- support in taking care of her. My boyfriend and I moved into an apartment with her in an unsafe neighborhood where we endured a lot of family drama, multiple break-ins, and all the while, I tried to find healthy ways to mourn the loss of my father. It was impossible because I found that I was so busy taking care of everyone and everything else that I forgot to take care of myself too.

For me, this lapse back into depression feels like a slap in the face, especially remembering how hard I worked to get out if it in the first place. I have to remind myself often that sometimes this does happen, and that I can’t beat myself up over it, but that’s hard to do when I get mad at myself for staying in my pajamas all day, wrapped up in a blanket and refusing to leave the house. I know I can’t live in my bed forever, and it’s going to take a lot of effort on my part to find the motivation to function again, so I’ll continue to live day to day, one step at a time.

Chandra Watts is our guest blogger.  She is a young adult who draws on her own life to change how the world sees mental illness.  She is one of the founding members of Youth MOVE Massachusetts.

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Heartache By the Number: My life with Dyscalculia

March 19th, 2013

staring-25819-mdys·cal·cu·li·a  (Diss- Kal-cue-lee-ah) n. Impairment of the ability to solve mathematical problems, usually resulting from brain dysfunction.

It can be very hard for me to speak openly about the struggles I have endured because of my learning disability, but in the interest of giving others like me hope, I have decided to really speak out. Ask the average person on the street what dyslexia is and most of them will have at least a general idea and acknowledge it as being a legitimate disorder. Ask that same person about dyscalculia, and they will usually not have a clue what you are talking about. When you try to explain, often they will just wave it off and say “Well a lot of people are bad at math.” But, what I’ve come here to explain is: it is so much more than that.

Since I was very little, I was always ahead of my age in terms of reading and writing. I was the type of kid who was reading Stephen King novels by the time I was ten, and constantly trying to write down my own stories and poetry. But if you asked me to do my multiplication tables on command, I would literally burst into tears after a few minutes. It isn’t that I didn’t want to learn. I actually really enjoy learning new things, and I understand how important mathematics is to living in the real world.  I just plain couldn’t. It doesn’t just stop there either. To this day I can’t read an analog clock, I often have to have my younger brother or another family member help me count up my money, and to date, I have never passed a single math class. I’ve gotten through school by using class substitutions and working around requirements with my IEP plan, but that can only take me so far.  One way or another, the phantom that is math will find me. Bus schedules tend to make me dizzy just looking at them, and I have to have a special application on my phone that does the math for tips at restaurants because I am terrified of not doing the math correctly and offending my server.

It’s hard to live in such a number-based world when numbers cause anxiety at every turn. Out of habit I am always early for appointments because I am in constant fear of being late.  I have to be careful to count my change well when I go to the store so I don’t get ripped off, and people are constantly annoyed with me over how I have to count on my fingers, and how slow I can be at that. But before even those things became the big issue, my self esteem was what took the biggest blow.

I didn’t get an official diagnosis until I was in senior year of high school. I was told by teacher after teacher that I was lazy, I wasn’t paying attention, I wasn’t studying hard enough or sometimes even that I was just plain stupid. The other kids would laugh at me. They didn’t know that I would stay up all night before tests crying over my textbook, or that I would constantly get into fights with my parents because they would get so frustrated when they tried to help me with my homework. I used to hear, “You’re so smart, and this really isn’t that hard. I don’t understand how you can memorize all 151 Pokemon but you can’t tell me what 8×12 is?” And the truth is, neither did I. I had no answer for anyone, I legitimately believed that I was just dumb, and I was doomed to be dumb forever.

I can’t really explain what it’s like to someone that doesn’t have it, but imagine that every single time something having to do with numbers comes up in your life you freeze like a deer in headlights. Your brain goes blank, you sweat, and eventually you cry or scream, or maybe you walk away from the counter in shame even though you really needed to buy that cough medicine, or you really need to pass this exam. It is paralyzing, it is humiliating, and it feels so hopeless sometimes that it can be hard to get out of bed, knowing you have to face the world. Knowing people might laugh when you get an answer wrong in class, or scream at you when they ask you what time it is and you’re not sure because you don’t have a digital watch on you.

On a whim one night, I got so frustrated I googled “Why am I so bad at math” and there was my answer: Dyscalculia. A learning disorder! I took a short test on a website and brought it to the school, begging them to give me a test. They scoffed at first, telling me that clearly this was just some internet thing someone made up, and I was making excuses. My suspicions were right, and I can remember crying from relief when I realized for the first time in my life that I wasn’t some inferior person.  I was just struggling with something that is so little known and so misunderstood that even the special education department wasn’t aware. The irony is that it is just now being more widely discussed, and it is possibly a very common problem which goes unrecognized in so many people  for their whole lives like it had in mine. I sometimes wonder if I’d made this discovery earlier, how much it might have changed my life.

Of course I still struggle. This will be a lifelong issue and I will always be different because of it. However, it is my hope that with advocacy and research, I can do my part to ensure that maybe in the future no kid will have to go through so much pain. Nobody should have to feel inferior because they have a mind that works differently, and I end this blog with a message of hope for those who are aware and struggling, and a call to the world to do your research. We are not lazy, and we are not making excuses. Our disorder is legitimate and painful and we would like to be treated accordingly.

For people who are curious they may have this learning disability, or that their child or student may have it, this web site has a treasure trove of information on the subject.  That site may have saved my life when I was in the lowest point, and I can only hope it will change yours as well.

Brittany Bell is our guest blogger.  She is a 24 year old youth advocate at Youth MOVE Massachusetts who is studying to become a youth counselor.  She hopes to bring awareness and support to the learning disability and mental health communities by sharing her experiences. 

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March 4th, 2013

He was worriedMy son has been in St. Elizabeth’s Hospital for more than a month, but he can’t stay there forever. We are faced with a couple of choices, neither of them good. He can go to jail for the charges pending against him (two assaults, three stolen cars, destruction of property) or he can go to a locked IRTP, an intensive residential treatment program. For six months he wore an electronic ankle bracelet which was supposed to keep him out of trouble. But he repeatedly “forgot” to charge it, kept pushing its geographic limits, then finally managed to pull it off and fling it somewhere in the park, never to be found again. Now the District Attorney says that to keep society safe, he has to be locked away.

“He’s not a bad person,” I tell our attorney, as though he needs convincing. He stole three cars in a three week period. Why? Because he met a boy at a dance who lived an hour away and he needed to see him. He assaulted program staff when they set limits which he didn’t think were fair. Or he imagined they set those limits, it wasn’t clear.

And all of it, deep down, stems from trauma. When he likes someone, even if he’s met them only once, he becomes obsessed, he must impress, make sure they like him back. He won’t give them a chance to reject him (diagnosis: borderline traits.) And if a staff sets an unfair limit, it feels like a horrible breach, the end of their relationship. He loses it, attacks (bipolar I; impulse control disorder.) All so he doesn’t have to feel that initial pain again (PTSD.)

He was sixteen, the first time staff pressed charges for assault. Instead of adult court, there was an administrative hearing. We sat in comfortable chairs around a gleaming oak table: the lawyer I’d hired, my son, the staff member of his residential program whom he’d assaulted. The staff passed around photos of his injuries: a hugely swollen eye, purplish bruises, ghoulish; a bump on the back of his head where my son had “grazed him“ with the fire extinguisher. “He could have been killed!” the magistrate boomed at my fidgety son, who was looking alternately scared and bored. I averted my eyes from the staff, though his face was healed.

It feels more shameful to have a child who hurts others than to have one who is “just” mentally ill. My son’s probation officer promised to “get him,” claiming he wasn’t disturbed at all. I worry that people think I am trying to keep him from jail because I condone his behavior. I know the staff thought I over-indulged him. But there is a ninety-three percent recidivism rate for teenagers who are sent to prison. I feel as if I am trying to save his life.

So we wait. I need to fax psychological reports, past hospital discharges, proof that he has “major mental illness” to DMH central office. As I collect the best documents–meaning those which make him look the sickest–I feel like I am trying to gain admittance to the country club or get him into college (I wish!) It’s a scary race. Will he get into the IRTP before St. Elizabeth discharges him?

Postscript: I found out this morning that he got into Center Point, the IRTP. Now we begin a new chapter.

Our guest blogger, Randi Schalet, is a psychologist and an adoptive mother of her twenty-two year old daughter and eighteen year old son . She credits her ability to carry on with parenting her challenging son to the support of friends, family and, especially, other parents.

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