Tag Archives: family engagement

Redefining family

January 8th, 2017

It’s been hard having to deal with a diagnosed mental health challenge for most of my life. Every day I have to be aware of where my emotions are heading, how low is “too low” and the difference between seriously wanting to die and just having a really bad day.  I have to have the recognition that, at least right now, one of the major reasons for my prolonged stability is taking the right combination of psychiatric medications consistently every day.  Having to deal with all of that, and adding a clear lack of family support on top of it, made my journey to my now-almost-four-years of stability a much harder place to get to.

Growing up in a big family, a relatively happy person in a relatively safe small town, family was important to me. Being adopted, I already knew family didn’t have to be blood-related, but as far as I was concerned being part of a family, even an adoptive one, meant that we all looked out for each other. And that even if we had challenges or conflicts, that family was family and you never turned your back on them.

That all changed when I hit an all-time low in my mental health journey when I was 19. I’d been hospitalized off and on about six times before that over a three year period, but I was always able to change a medication, continue therapy, and get back to my life in the community. That year, though, I was hospitalized 13 times, had been admitted to and decided to quit my partial-hospital program twice, and had switched therapists multiple times. On top of all of that, all of a sudden, the little emotional support from my family that I had been receiving was taken away.

I was in the lowest emotional spot I’d been in my life, and now even my family couldn’t stand being around me anymore. In this particular circumstance, I was told by my parent during an inpatient hospitalization, during a three minute phone call, that I would not be welcome to come back home after I got out, leaving me effectively homeless. This one phone call extended that admission for over a month due to my increased suicidality and hopelessness.

Four years later, I have learned some valuable lessons about family through the few rough years that followed that phone call. I’ve learned that family is however you want to define it, and whomever you want to include in that definition. It doesn’t have to be blood-related, or a legal bond, like adoption. It can be whomever you feel is your family.

For me, I now have a self-made family that is my most important support system. It’s made up of close friends from all walks of life who I have chosen to become my family. They’re the adult supporters who cheered me on when I became homeless and supported my decisions in my mental healthy journey. They knew that I was capable of more and stood by my side to help me achieve it. They’re former clinicians who went above and beyond their job descriptions and to this day maintain a connection with me. And they are peers from all walks of life and age groups who sat by my side and heard my lamentations and knew where I was coming from because they’ve experienced challenges too. Peers who would validate my situation, but also wouldn’t let me drown in the despair because they knew all too well the dangers of dwelling too long in the deep end.

I think one of the hardest lessons I’ve had to learn for my own mental well-being is the recognition that even if people are supposed to be family, it is unrealistic to expect support when  that person is not capable of being that supportive person for you. And for me, in my individual journey, that recognition also meant forgiving those people for past hurts, and not holding on to those negative feelings within myself and letting it taint my interactions with them today.

Because for me personally, if I’m still letting those past hurts inform my present, then I’m still being held back from being the best version of myself that I can be. And me not becoming the best version of myself isn’t something I’m willing to risk.

Dani is a 24 year old college student and mental health advocate living with bipolar disorder.  She enjoys writing poetry and singing, as well as being the proud parent of 2 adorable felines.

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How PPAL has Helped Me

March 4th, 2015

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

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

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

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

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

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You know it when you see it

October 10th, 2014

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

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

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

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

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

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

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

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

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

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

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What’s in your wallet?

February 21st, 2013

6417415359_c09182877eNot too long ago my youngest son and I went off to Walmart to get some much needed supplies.  We each grabbed a cart and our plan was to meet at the checkout aisle in 30 minutes.  Little did we know that three hours later I would be supporting a mom whose daughter was having a mental health crisis and having trouble accessing mobile crisis services.

The store was filled with shoppers and lots of noise on this busy Saturday.  Every aisle I visited had at least two people, sometimes many, in conversations.  There was one constant sound in the store, though, and it was a young girl screaming about a doll. At first I ignored it, thinking it would stop when she got tired or her parents left the store.  I remembered at times my boys would cry because I would not buy them another toy while we were out shopping.  So I had learned to tune those sounds out.  But I couldn’t tune this out ….it was different.

The yelling was getting louder and closer with the little girl now screaming “I want that doll.” Then the chase began.  The little girl ran right by me screaming, chased by her crying mom who was walking fast to catch up with her.   This went on for a long time and I kept thinking that the manager or an employee would offer the mom some help or even call the police to help calm the situation down.  But no one did anything.  When my son and I got to the cashier, we started unloading our carts.  I could still hear the mom crying so I looked for her.  When I saw her trying to restrain her daughter and being bitten, I knew I had to try to help.

I bent down and said to her “I don’t know how I can help you right now but I would like to try. Please let me know what I can do”.  By now there were at least 20 people watching us and not one said “I’ll help too.”  She said that she could not pick her child up because she was biting and kicking her and she needed someone strong to help.  As I stood up to see who I could ask, a man entered the store and came right over to us asking how he could help. The two of them carried her out as she was trying to hit and bite them.

The mom asked the man to put the girl in her car seat so she could not hit or bite anymore. The girl was stiff and rigid and it was impossible to get her in her seat.  The man restrained the girl and the mom and I began to brainstorm ideas.  She told me her five year old daughter had ADHD and saw a clinician. When I asked, it turned out she had the clinician’s crisis number.  She called and explained that she could not get her daughter into her car seat and need them to come to Walmart and help her.  She was told she had to bring her daughter to their office.  They offered nothing else and that was the end of the call.

I then asked her if she knew about mobile crisis services and she did not. I explained, then asked if she wanted me to call for her.  She said yes but please, don’t call the police.  I said I would not.  So while the man was still restraining the girl, I ran into Walmart to use the phone and call for help.

First, I called directory assistance.  I had the address and knew the kind of service but they replied they had no such listing and even though we tried to brainstorm, it got me nowhere.  I then called the local hospital’s emergency room for the number.  No luck. Next, I ran and got my purse out of the cart because I thought I had the mobile crisis business card in my wallet.  I didn’t. I ran to my car to see if I had it in my briefcase but again, I didn’t.

Finally, I ran back to the mom’s car to find the little girl was still so out of control that the man was not able to let her go.  I felt like a failure and said to the mom, “I can’t find the number.  Do you want me to call a relative or someone?”  She told me her husband had just picked up her message and was trying to find a ride.   I told her I thought she was doing a great job of staying in control and handling the situation. I gave her my card, told her about PPAL and said to please call.   At this point, the young girl’s father arrived.  The girl was still crying, but exhausted now and it was easier to get her in her car seat.  They thanked us and off they went. It had been almost two hours since the crisis began.

I went back into Walmart and talked to the manager.  She said they usually call the police when there is an incident, but didn’t feel it was the right thing to do with a young child.  I explained that the police shouldn’t be your only option.  Later that day, I returned with a stack of business cards that I asked her to pass to her employees and leave at the service phone.   I put a few cards in my glove compartment and several in my wallet.  Now when I am in a store I give the manager one and ask her to post it by the main phone and let their employees know what it is.  I would never want another family to have problems accessing a service that is intended for this purpose.   So, will you be ready to help someone in crisis in your community?  What’s in your wallet?

Beth is the mother of three young men with mental health and medical challenges.  She is a strong advocate and involved with several groups and initiatives around genetics, medical and mental health.  Beth is the Training Coordinator for PPAL.

  

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A mission to make “normal” memories happen

May 15th, 2011

Today’s post is by our guest blogger, Meri Viano. **** As I look around and see all the parents in my community raising their kids, I often wonder what it is like to experience “normal” school activities. As I raise kids with emotional needs, I try to teach my kids that there is no such thing as “normal.” But let’s be real here:  there are many times during the school year that we bump into a situation where we have to decide what kinds of “typical” experiences we need to make happen and which ones to let go of.

I am not the type of person that usually gets caught up in this, but  sometimes the differences between what my children experience in a therapeutic school and what other children experience in public school has to be thought through.  The other day, my son and I had a conversation and of course it turned into a mission.  My kids attend “private” schools (as they call them) and  I am fortunate to have found two great schools with parent support.

Mission 1:  My oldest son asked the other day, “Mommy can I get a class ring?”  I immediately said sure, then thought quickly, “Let’s GOOGLE it,” since it’s not something provided by his school.  I was amazed to find a site dedicated to class rings and even more surprised that you can engrave the name of your own town on it.  My son deserves the same special opportunities as other kids but I’m the one who has to make sure it will happen. I know this is important to him and is one thing that he will remember.

Mission 2:  My younger son has been attending a “private” school for 2 years.   He came home his first year and told me he was having school pictures taken. I remember saying, “Really?  That is great!” The director of his school, an amazing woman, takes photos of all the students in the school. If you have money or not you get a picture! However, my other son reminded me recently,  “I haven’t had my class picture taken for 3 years”  True–and how did I miss that? With all the other stuff, it just happened. Mission number 2 has been accomplished because the school director made this happen.  While demands such as MCAS had crowded it out, knowing it was important to the students put it back on the “to do” list.

Mission 3: I love volunteering in the school. To go on field trips, to make a project, to do a fundraiser with the students in the school – I love it!! I remember when I joined the PTA in my town.  It was an amazing opportunity to have parent voice front and center. But in “private” schools you are lucky if you even come across parents. Either no one is allowed to volunteer because of privacy issues, or you are the only parent asking because so many children are in care and custody of the state. When my kids were in public school, I made gingerbread houses,  was there for teacher appreciation day, and also field day! While I hated being the parent whose child needed a one-on-one, I loved being there.

At therapeutic schools, it is a new “concept” to have parents involved. Families, parents, siblings, grandparents are not often not visible there or attend activities.  In public school, you are invited to many things, and they know that parent involvement is necessary to have “active” supports for their students. In “private” schools it is “different” to ask parents to be involved.   Both of my boy’s schools are trying very hard to include parents.

Family involvement is really not anything new for schools to accept. However, it is hard for some schools to understand that even with obstacles and challenges, we want involvement. We just need to be asked and told that we are wanted.

As I thought about the differences in public and “private” schools, other milestones came into my mind:  prom, high school graduation and then the bragging and boasting about where your child will be going to college.  My kids will grow and understand that it may be a bit different, but it will be unique, special and amazing. 

I am extremely lucky to have two kids that will teach me how to advocate for “normal” childhood memories. Hopefully, they will have many more of them and know that they are worth just as much as any kid that goes to public school.

The picture is of a school zone sign from the Ottawa County Museum in Kansas.  It was taken by Chris Murphy.

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