Tag Archives: family support

My adoption, my mental health and my community support network

March 4th, 2017

I was an African American child adopted by a white mother and there were several things that came up for me in my childhood.  They were things that a biological child may not have had to deal with. Some were easy to see and identify like the color of my skin versus the color of the rest of the family’s skin. Others were not so easy to identify.

I remember at one doctor’s visit they asked if there was a family history of cancer, diabetes, or any other health issues. I had to say “I don’t know, I’m adopted.” That meant that the doctors were unable to see a complete picture of my health in order to provide me the best healthcare possible. That also meant that extra tests were important so any issues could be identified and would be caught.

Of course, I had the same experience with mental health questions.  When I visited a psychiatrist’s office they would ask me questions like, “Is there a history of mental illness in your family?” Once again I would have to answer “I don’t know, I’m adopted.” That meant that the mental health providers were also unable to see a complete picture of my mental health without a lot of testing.  Which is what we did.

I remember having a lot of different kinds of tests and assessments, and many were just to rule different things out.

Some issues are more common to people who have been adopted. Some of the most common (but not only) issues that adopted people face are based around trauma and separation. PTSD  can be one issue, as well as reactive attachment disorder, both of which can affect someone in variety of ways.  Being aware of and sensitive to these common issues is critical as they can have direct and long lasting impacts on your loved one and your family.

Besides the impact that adoption can have on an individual, it is also important to recognize the impact adoption can have on other family members such as siblings and even parents. Providing the proper supports for all family members is truly important.

We were really helped by several agencies and organizations dedicated to bringing awareness to and support for families involved in adoption.  My mother found an organization that provided support for single parents who have or were thinking of adopting a child. This became a support network for my family and they did more than just support us emotionally. They provided my mother with a chance to network with other parents experiencing similar struggles, attend informational seminars and workshops and share resources and learn about available local and national resources.  More than that, it provided us with a real sense of community. I remember spending holidays with the same (for the most part) group of kids and families. I remember going on vacations with these other families, building lasting and deeply felt friendships and connections (many of which last to this day). These experiences came to me only through this organization.

My mother was a driving force in the quest to better understand and support my mental health. She knew it was important that she take charge of my mental health care and continuously advocate for all of the needed tests and assessments.  She pulled things together to provide me with the support I needed so I could be the best me possible.

My mother did a lot of research on mental health and behavioral health, attended support groups and became involved in a support network of other parents raising kids with mental/behavioral health concerns. They shared information, resources, tactics and strategies and told each other what worked or didn’t work. They shared stories of struggles, failures and frustrations, but they also shared stories of success, joy and hope. They supported each other, through both good times and the difficult times.

All of this was vital to help supporting me both in terms of my emotional well being and accessing the best education possible. I went to public school most of my childhood but there were a couple of times when it was suggested that I attend a school with more emotional and academic support. I only had access to these schools and programs because of my mother’s push to identify and treat unknown mental/behavioral health concerns, and advocate for me to get a proper and appropriate education.

By becoming involved with a community of people who were experiencing similar struggles, we had support and the chance to interact with others in a nonjudgmental environment. We had the opportunity for sharing and learning about resources and mental health care system navigation. Navigating the mental healthcare system can be daunting and frustrating but my mother learned early on that if she didn’t advocate strongly for my mental health care and education, nobody else would.

Josh Schram is our guest blogger.  He is the proud parent of two children who have each experienced mental health and/or behavioral concerns at different times in their lives. Josh was adopted by a single parent and enjoys using his past experiences to help other families in need of support and direction.

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Asking “Do you need a toothbrush?” can be a small bridge to support

February 7th, 2017

When you take your child to the emergency room in any part of the state, you know you’re there for a bunch or reasons:  unavailable doctor hours, urgency, crisis, and most of all, acute evaluation to get you connected to admission. For parents, it feels pretty overwhelming the minute you step through the door.  You are scared, devastated and shaken and it feels like you need everyone there to get you through it. If your child needs to be admitted to an inpatient bed, you also look to connect to the doctors, nurses and staff.  Sometimes, you begin to trust and lean on them.

That is especially true for psychiatric emergencies. Here in Massachusetts we have mobile crisis and community supports to hopefully guide the process.   There might be a family partner, a person with lived experience, who knows what this all means and can explain to you or support you as you walk through it.  That person can listen, increase how comfortable and connected you are.

Emergency rooms and hospitals can be a pretty different experience, especially when you have a child with mental health needs. When your child is a young adult over the age of 18, it’s even harder and there is extra anxiety and fear.  I remember sitting with my son who had requested that I stay with him as he was being seen. He had turned 18 and I wasn’t allowed in – unless he asked me. Fortunately for me, it was a time when he was not in a psychotic state and could invite me to support him. My fingers were crossed and  I was thankful his level of paranoia and hallucinations was low so that we could remain a united front — a family of an adult child with an adult mom.

It was different and it was scary. Adults who had overdosed were there and some were detoxing.  Adults with acute psychiatric symptoms were there and some were screaming or violent. Some people had been waiting for days for help.  There were 2 or 3 who were locked in another room or tied down and medicated to be quiet. They were being managed, but not treated.  Where do you go? What do you do?

I felt like I was reliving the noise, visions and memories that I’ve had when I have supported families across the state who need mental health treatment for their child. But here, it was so hard to make the connection with people so they’d understand that the reason that they were waiting 7 days, 10 days or even more in an emergency room for care wasn’t them.  It is the lack of beds and the multiple other people waiting to get treatment too.

As a parent you wait, sleep and walk back and forth trying to count down the time that is passing. You are trying to remain the strong wall for your child.  You are there. You crave conversation, you crave a break, you have to ask many times for a toothbrush, food, water and to use an outlet to charge your cell or use someone’s phone to call and check on the rest of your family.   You wonder why they make waiting so tough on parents.

If you are in the emergency room for medical care,  you are offered these things. When you are there for a psychiatric crisis, it’s different.  Mental health has stigma, blame and judgement woven into the approach sometimes and it spills out on the young person and the parent.  I smile when people talk about “complex children.”  Myself, I call them the ”unique children” who need support and so much else.

Who are they, these unique children and their families? They are children and youth with autism, violent behavior, eating disorders, gender identity concerns, and sexualized behaviors. They are children who are sometimes hard to treat successfully.  They are children who burn out their parents and often their siblings. They are the children that need support ASAP, not waiting in the hospitals until someone or something is asked or pushed or goes the extra mile to get that kid in.

When I first began to advocate for my child’s education program, I never thought I would have to learn the special education laws or strategies to use them.  When I first brought my child to treatment, I didn’t realize I would need to learn to call the insurance company and even appeal.  Most of all, I thought that if I could get medical care for my child with mental health needs it would be much easier to get care for his brain!

In Massachusetts and across the country, we are talking about integrating medical health care and mental health care to create a brave new health care world.  This is exciting.  It’s going to be quite an undertaking and will need the voices of youth and families to work and tackle the problems.   It also is going to need all that stigma and  judgment and blame to go away and have real empathy for  what families go through and that the heart and brain are equal in care.

One way to start is that if your see a family waiting with their child or young adult in the middle of a psychiatric crisis, show that caring right now.  Ask, “Do you need a toothbrush, a phone charger, some water or something to eat?”  We have to start somewhere to make this happen.  Let’s start first in treating all people like humans in the emergency room and teach the system that the brain deserves respect and understanding.  The parents, youth and young adults do too!

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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7 tips from a support group fan

January 23rd, 2017

Okay, I’ll admit it.  I’m a support group fan.  I think groups can do lots of things all rolled up in one place – support (of course) and hearing about resources you never knew were there.  But other things, too, like receiving high fives for getting through a tough school meeting or finding shortcuts to strategies you need.  Through it all, you know you aren’t alone.

So what’s the draw in this age of social media?  Online, we can congregate, stay in our sweats or PJs and never leave the house.  It has to be worth it to venture out.

I started out as a support group member.  My son was seven, having meltdowns three or four times each day and I was overwhelmed and fresh out of ideas. I was running to appointments, talking to the school every day.  Regular errands, like going to a grocery store were a surefire way to add in more fireworks, turning a half hour task into 90 minutes or more.  When I looked in the mirror I saw someone who was discouraged and depleted.  She needed help.

I had my own therapist, as did my sons, and they were great.  But they hadn’t lived what I was living.  They didn’t know the mixture of dread, fear, sadness, anger, guilt and exhaustion I lived through each day.  I went looking for someone like me.

I didn’t find her. Instead, I found another mother who was just as overwhelmed and depressed but had great ideas on how to fit in some mental health breaks during the day.  I found parents whose children had a range of special needs and they had a menu of strategies for success with their insurers and their schools.  I heard about books to read, movies to watch and experts to seek out.  I met people who reminded me to laugh. Evem better. they were all in one group. My knowledge increased and what’s more, I learned to see value in the little successes and try out new ideas – often ideas I hadn’t had myself.

We moved a year and a half later and it was brutal losing that group.

Not long after, someone asked, “Why don’t you start your own group?  You’ve been a group member,” she said.  “It will be a piece of cake.”  Not knowing what I was getting into, I said yes.

The first meeting seven people showed up.  They weren’t sure why they decided to come and I wasn’t sure what I could offer.  At the end of two hours we were laughing, sharing stories, eating food and rooting for each other.  We were all parents who had children with emotional and mental health issues, some with diagnoses, some without.  By the end of the second month, people were talking and meeting outside the group.  By the end of six months, they were going to hospital and school meetings with each other.  One mom broke her ankle just before Christmas and another went shopping with her, carrying bags she couldn’t manage on her crutches.  “It’s not even my holiday, the other mom told the group. “I’m Jewish.”

Every support group has a kind of individual chemistry and a lot of that comes from the facilitator.  If you are kind and compassionate, your support group will be too.  If you like rules, it will be orderly and if you like laughter, people will share their humor.  If you are curious, hopeful, determined, accepting and friendly, those qualities will show up.

Although we had a short list of group “rules” two were repeated often by group members.  They were, “what’s said in the group stays in the group” and “no blaming.”  A third rule – the group belongs to the group – was taken as a given.

One mom, Mary, would come to the group regularly with her husband.  She had a teenage son with bipolar disorder and told us he got it from her.  She felt so guilty, she said, that she passed on the bipolar.  Another group member put a stop to that.  “There is no blaming here, not even blaming yourself.”  Once Mary came and was frazzled, spoke rapidly and had difficulty staying still.  “I’m off my meds, she told us.  “I’m worried I might be pregnant and I don’t want to take a chance my psych meds could hurt a child.”  She couldn’t afford a pregnancy test until the next paycheck.  Another group member grabbed her car keys, ran to the local Walgreens and bought a test.  She and Mary disappeared, then came back with the results, which were negative.  Mary promised to start her meds again that night – she did – and group members called to be sure she was back on track.  She was supported and directed but never judged.

Tell me, can you do all that online?

Another member, Maureen, found a way to make us laugh no matter how dire things got in her life.  Her nine year old son had tried to jump out a classroom window.  Instead of agreeing that he needed special education, the school system moved his class to the first floor, so he wouldn’t have far to fall.  Her son also saw things that weren’t there.  One day, she told us, he ran to her and said there was a man in his room and the man was jumping on his bed.  “Honey, she responded, “I should be so lucky.”

I began a second group a few months later and both lasted for seven years, until I began a new job and couldn’t do it anymore.  It was even harder leaving those groups than it was my first one.  Each meeting was like watching a soap opera or a reality show and I would be drawn in, rooting for people, holding my breath at other times.  I was left wondering what happened next to everyone.  Occasionally, I would hear a snippet, get an email or connect with someone online.  Considering what they had braved, most everyone was doing pretty well.  They certainly deserved it.

I’ve thought a lot about what makes a group work, because when it does, there is nothing like it.  Here are my top 7 tips.

1.  Create a community, not a group. Groups have a set time, specific rules and guidelines.  While those are important, they don’t make a group successful.  When members feel like this is their community, things take off.   Communities are built on a sense of belonging, shared experiences and knowing what you can expect from each other.

2. Share the emotional connection. The members of the group will come looking for someone just like her, or him.  Like me, they won’t find it.  But their experiences will echo one another’s.  In one group, a mom described her son’s intense depression and how isolated he was.  “At least he doesn’t use drugs,” she said.  The next mom said, “My son uses,” and went on to describe his isolation and how it tore her heart.  They connected that night and sat next to one another for the next several meetings.

3. Emotional safety is essential. Parents live with chaos at home and frequent unpredictable behaviors. When a group has group rules, a lack of judgement, a commitment to honesty, clear boundaries around confidentiality, members can breathe.   Sometimes you don’t get all the rules right, though.  I was terrible at ending on time, often finishing a conversation in the parking lot.

4. The facilitator must have personal experience raising a child with emotional and mental health challenges. Some experience with support groups is pretty important, too, as facilitator training alone doesn’t do the trick.  Culture matters a lot as well especially when groups draw from communities that are diverse.  Remember, the facilitator is not the authority, but should be the catalyst for creating a community.

5. Foster networking and mutual support.  Parents often feel pretty alone.  They are like Atlas holding up the sky, not able to let go of the responsibility.  Groups work when the group doesn’t just support the members, but the members support one another.  I knew one group leader who did a lot of one-to-one work with parents.  When she formed a group, the members tried to continue their individual relationships with her, instead of forming new ones with each other.  It didn’t work out very well. Some group members will cook for the group, make calls, form carpools or even advocate for one another.  It’s their group so they know what works.

6. Continue to grow the group. Group members come and go, but if you’re lucky you have a mix of long time members and newer ones. It’s hard for parents to locate groups, so facilitators have to get creative when marketing.  I took a lot of calls from parents before they ever stepped into a meeting.  They’d say, “Do you think I’ll fit in?” “Do I have to talk?”  Facilitators have to reach out – often by phone – before meetings, afterward and in between.  Connection fosters community.

7. Nurture future leaders. When you run a group, everyone at the group watches you.  It can be unnerving at times, but this is how we all learn.  When someone offers good advice or brings in a new resource, sit back and smile.  They might be doing this too someday.  We’ll need them.

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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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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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