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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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Where have all the experts gone?

May 18th, 2015

expertHave you ever wondered where all the expertise in children’s mental health is hiding? The experts are probably out there but they seem harder and harder to find. For parents whose child with mental health needs is “complicated” or “serious” or even both, expertise is critical to good care. There are far too many families reporting that while they’ve had care for their child, that child’s symptoms have not improved nearly enough.

When my son was nine, he had a still-learning psychiatrist, Dr. G, working with him. Fortunately, Dr. G was supervised and mentored by someone extremely experienced and knowledgeable. My son hid, terrified of unspecified things, under the chairs in the waiting room and became manic and rather wild at other times, even rampaging through Dr. G’s office one day. Appointments were never the same twice. When Dr. G left to go to a different position, he said, “Thank you for the opportunity to work with your son. I’ve never met anyone like him before.” While that was somewhat unsettling to hear, I’ve always hoped that he could help the next child and family that much better.

When we saw Dr. G, I expected that he would observe certain behaviors and say, Aha! I know what that means. I thought he would see my son’s fear, mania and depression and have effective, wise advice. But he was learning right beside me. What made the difference was that he had close access to a very experienced clinician, who had helped complicated, serious children before. While there was a measure of trial and error, we had the benefit of someone else’s expertise.

This isn’t always the case for many families.

There is a real mental health workforce shortage here in Massachusetts as well as nationwide. In an Annapolis Coalition report authors note that there is a critical shortage of individuals trained to meet the needs of children, youth and their families. As one example, the federal government has projected the need for 12,624 child and adolescent psychiatrists by 2020 while the projected supply is 8,312. In addition, there is a growing lack of racial and ethnic diversity in the workforce.

The number of therapists is declining while the need grows. We are identifying more children through screening and a focus on early childhood mental health that need mental health care. But these numbers only focus on access. What about expertise?

In April 2015, the Congressional Research Services issued a report on the mental health workforce. “The quality of mental health care, they wrote, is influenced by the skills of the people providing the care, while access relies on, among other things, the number of skilled providers available.”

Expertise matters. Many families search for a therapist, clinician, psychiatrist or program for weeks. They then find that the wait to get in is often even longer. When they get that first appointment or walk through that door, they are looking for someone who recognizes their child’s symptoms or behaviors and can say, I’ve seen children like this before. Or if they haven’t, they have a colleague to consult.

When my son was a little older, he was in a therapeutic school where there were clinicians on staff. They took one look at his mental health record and wisely matched him with a very experienced psychologist. She was patient, smart and skillful. She understood how to help both his teacher and me create an external structure (routine, limits and predictability) when his internal self was in chaos. She never ran out of strategies and used whatever resources were at hand. She explained to me that medication was to help him become more available for therapy and therapy was to help him manage his illness. She had seen children quite like him before.

Many families hold child psychiatrists in high regard, believing them to be the best trained and most knowledgeable. But their appointments are limited by insurers to short increments of time and are usually focused on medication management not detailed observation or strategy sessions. They are also in short supply. As a result, psychiatric nurses often prescribe and see children who need medication. There are psychologists, social workers and bachelor level therapists out there as well. But families report that many are early career, just starting out. Does a lot of time and less experience work? Or does greater expertise but short appointments work better for children, teens and their families?

When my son was nine and I moved back to Massachusetts, I made 16 calls before I found someone who was willing to see a complicated, serious, hard-to-treat child. I found someone by calling hospitals and other institutions because they knew where the expertise was within their walls, although they didn’t know what was in my community. That first person I found led to the second and then a third, who was Dr. G. I had to track down someone like a bloodhound follows a trail. I don’t think it’s easier finding expertise today but I’m willing to be proven wrong.

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My parent network – a web of resources

May 11th, 2015

web with raindropsIt’s interesting that when you become a parent you think of all the places you want your children to find. You imagine them joining the local soccer and baseball teams or the dance class. Perhaps your kids will do things with other kids from the neighborhood or the community or be part of a church group. You think about the local fundraising entities in the schools like the PTA, The Mothers Club or the Principal breakfasts. You also hope to connect to parents who are waiting for the famous, “Book of parenting “that you swear you ordered.

Reality hits. Oh, here comes the curve ball. You have a unique child, maybe one, maybe two or even more than that. You are different. Your life becomes a world of IEPs, clinical appointments, books about parenting “different children”, internet searches and even a parenting class or support group designed for people like you. Yes, your child is unique– society would call them complex. As a parent, you also become unique and different. What you imagined you would connect to doesn’t match your needs. Now you have to search to find something else to connect to. What is it? What do you call it? Why can’t you google to find it?

I did that one time and when you google “parent network” you’ll probably find groups of parents whose kids have serious medical illnesses, sometimes chronic, often long lasting, that may end in something terrible.

Is this supposed to give me strength?

Whether you are a first time parent, a beginner or an advanced or crisis parent, let me give you my understanding of what will help. It’s a real parent network. I call it the Web of Resources, my web of strength and the group I hold close to me to help me stay on track. There is one thing to remember when you join: they will be like no one else. Your best friend, biological family, therapist, doctors, siblings, and sometimes your partner, spouse or long-term relationship may not know them, need them or use them. But you – the advocate, the ally, the resources, the finder of information- you will need them more than you know.

You build the Web of Resources one by one, connection by connection because you need them all.

For me, this is how it began and continues until today. I met my first two fearless advocates in Connecticut. They were from Massachusetts and knew what a psychotic break was, which caught my attention. I continue to keep them close and they have helped me survive. I call them my Western Mass group. Second, I found peers that had experienced school issues and education. They will remain in my life forever. One from Massachusetts, another from Michigan while a third is from Alaska. Next are my medical friends, many from Family Voices, local in Boston, and then more across the state. Finally, are my friends from the mental health and residential worlds — thanks to you all in many different locations. Some have written books, others just stay local and run support groups, and others remain on speed dial for me. You have to give back what you take in this web, because the food that you give each other is nothing more powerful than knowledge, laws, and strategies.

The web is growing. As my children become adults, I reach out in a new area to peers like them to teach me how to be involved with my adult child- because they will remain my children. That being said, I follow YouthMOVE Massachusetts and they are the last of my parenting resources and important in my web.

For me the Web of Resources is about feeling whole. Without it, I would feel incomplete. I would not be nourished again and again so I can walk down the path of parenting. This is my long overdue “thank you” to the many people who make that web for me. They have helped me learn who I am and what I can and cannot do for my children. Turns out, my children will be okay. And so will I because of all of you.

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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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