Tag Archives: parent

Transition

November 6th, 2017

It still takes me by surprise when my now-young-adult children have been doing wonderful for weeks and months and then all of a sudden the signs start showing. Showers not happening, slow and fast speech and maybe a change in routine of medication or daily activities. As the parent I see this and sometimes it takes me a week or two to know that “the change” is happening. Mental health symptoms coming on strong and can be hard to catch.  They are also not wanted.

Sometimes I’ve taken a break from needing mental health support.  We might have had a break from therapy, hospital visits or even needing provider and state support. But when the change happens you need family and friends by your side.

This is when I reach out to the supports – friends, family, and providers. I get the push back from providers every time saying,” your son is independent and his IAP (Individualized Action Plan) has already been written so we can’t do anything else.” Really? What happened to the days and times that providers would just do what individuals needed to keep them healthy? That is really what is needed. Community includes the parents, the family and the family friends. We do not get paid to take and love our young adult.  We see them as family.

As my son would reach out and show signs of needing hospitalization for hallucinations and ongoing voices and fear, I would call the supports to get the TEAM on the same page. The team did not respond to what I thought or my son felt was needed.  Instead it was , Let’s try to keep him in the community. Really, again? I wonder if they realize that when my son and I advocated for the hospitalization it was a for a tune-up to make life stable and better for 3 more years. I am known asking for people to tell me I am right, and sometimes they don’t.  But really I am looking for people to work with us as a team.

My adult children grow and understand themselves even more.  Independence is exactly what we would like to have with our children. It really is a quality of stability and supports that we want our children to know how to gain for themselves. Whether young adults have CBFS or case management, there are many young adults with parents/caregivers that continue to get the calls from their adult children.

Recently, I was asked by a provider to please make sure my voicemail box was empty. I explained that I empty it two times a day but sometimes with two young adults who call me with their challenges it isn’t easy. This happened at a time that both of them were having struggles and using one of the best coping strategies they have.  That was to call my voicemail only to hear my voice so that they would be ok.

I have also been asked why I continue to meet them weekly as it really isn’t needed anymore.  I want to explain in my family I talk to my mom every morning and prior to that, I also talked to my grandfather daily. I have several friends in the community that do not have children like mine and talk to their child daily. So why are my children different? If anything shouldn’t they have normal happenings and opportunities?

I am working with the my children to be independent and what I need is for the people that get funded with the state dollars as providers, and state systems, to work with me to teach skills like cooking, budgeting, social opporutinies, transportation, how to drive, how to work out things on their own. I am hoping for them to be able to live – and not call 30 times a day because they have skills so I do not have to figure it out with them.

When I ran a group home in my 20s for adults with developmental delays, we took every opportunity to teach to include, to model, to reinforce.  In the Transition Age World we need to teach, model, and repeat skills – instead of allowing people to sleep, be depressed and refuse to do anything just because they have rights.  They have the right to learn and be empowered! Let’s work together as a team to make that happen.

Do you want young adults to add to society, feel good about themselves and help someone else? The time is now to change programming, supports and activities to be right- make a change!

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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Ask me a question, I’ll tell you a story

April 4th, 2016

tell your story 2I felt a wrench in my heart when I stopped running support groups.  It wasn’t the late nights or trying to make each one worthwhile.  It wasn’t even that I had some version of burnout (I didn’t).  It was missing out on the next installment of everyone’s story.  I knew by then that even the parents who seemed to have things under control were often living a version of Mr. Toad’s Wild Ride.

There was Joe, who worked in construction and got up in the dark every morning, yet drove around several nights each week trying to find his 15 year old son.  He knew his son was using a variety of drugs and he also knew if he could keep him safe for a few more weeks, there would be a slot in a program for him.  There was Annabelle whose son, Bobby, tried to jump out of 2nd story school window when he was 9.  She fought to get him in a therapeutic program and when she finally did, her own mental health problems surged up.  There were Rick and Susan, who problem solved like crazy to make sure their daughter graduated high school.  She would only eat one kind of pizza, sold several towns away, so they would drive those miles several times each week to avert the obsessive, restrictive food focus that bled into other parts of her life.

I wondered if Joe’s son got into the program and if it helped.  I worried that Annabelle was so exhausted from fighting for services and wellness for her son that she had no energy left to battle for herself.  I fervently hoped that Rick and Susan – who did so much to get that diploma – got their daughter into a college and that she stayed enrolled.  And I wondered if they all thought about my story and my son’s journey, too.

Support groups are ground zero for telling your story.  There is no wrong way to share it.  You can make it short and hit the high points.  You can ramble, cry, smile and pick up the thread.  You can tell it all at once or in installments.  Others will nod, maybe comment or offer help and you know they are your comrades in arms, fighting the good fight with you.

Talking about your experiences in a support group can be therapeutic.  Others can see where you sailed through and where you were flying by the seat of your pants.  They might jump in and point you to resources you need or suggest strategies you haven’t thought of.  You learn what parts of your story make others sit up and nod and what parts don’t get the same reaction.  While you are getting help, you are also learning to tell your story.

For many of us, there comes a time when you decide to tell your story publicly to someone else.  Maybe it’s a journalist, maybe it’s a legislator, maybe it’s an audience of people who’ve never raised a child with mental health needs.  You want them to understand, to be moved, to feel the injustice, the hurt and the determination to make things better.  You are willing to forgo your privacy and expose your pain in order to help the families coming along behind you.  You want to make a difference.

Storytelling is one of the most powerful tools we have.  It is the medium for translating emotions and experiences into action.  Personal stories can educate about challenges and inspire people to do something about them.  Leaders often call great stories “inspiring” while journalists call them “compelling.”   But most of us have to learn key storytelling skills.  We start by knowing we have a story to tell and it deserves to be told well.

When you tell your story in a more public way, you consider other things as well.  Your time (or print space) is limited, so you focus on what aspect you’d like to tell.  If you want to make a point about lack of services or too-high-to-jump-over barriers, you think of what would be most dramatic things to highlight.  Sometimes you choose the parts that are most likely to help the families coming along behind you.   As Patricia Miles writes, this is the first skill set of family partners: the decision to blend their private story with their public role.

Telling your story isn’t only about touching people or creating change in the system that serves our kids and families.  Just as the stories from Joe and Annabelle and Rick and Susan stayed with me, our stories stay with the people who hear them.  After someone hears a parent tell their story, I am often asked – sometimes a year later – what happened to that youth or those parents?  Did the young person get better or achieve their promise?  Did the parents leave those times of crisis behind and become able to step back a little?  Or if I was the one who told my own story they ask, How is your son doing?  We often have no idea who remembers us and who is rooting for us.  And that’s actually pretty cool.

Change, they say, happens one person at a time.  Just like storytelling.

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Have you experienced patient profiling?

April 12th, 2015

emergency roomHave you ever heard of patient profiling? It takes place when medical–and mental health–professionals make an assumption about someone seeking care based on their appearance, race, gender, financial status or even the kind of illness they have, such as mental health or substance use problems. The first time I came across this was in an article written by Pamela Wible, MD, who recounted patient stories where the personal judgment of a medical person resulted in poorer care. She worried that, similar to racial profiling by police, patient profiling is more common than we want to admit. And it undermines care.

When I first heard about patient profiling, I immediately thought of my younger son. A few years ago (when he was in his early 20s), he woke up on a Sunday morning with horrible vertigo, He couldn’t stand, couldn’t focus and couldn’t drive. I took him to the local emergency room where they asked a series of routine questions: Are you on any medication? (No.) Have you ever experienced this before? (No.) Have you had anything alcoholic to drink? (Yes, one beer last night with friends. I was the designated driver.) Unfortunately, the questions stopped after he said he had had that beer the night before. He was given intravenous fluids, allowed to rest and sent home. The next day, his very irate primary care doctor sent him to a different emergency room where he was treated for inflammation of the inner ear.

For my son, staff at the first emergency room decided that a young adult in his 20s experienced vertigo because he had been drinking. They made a snap judgment and his treatment was delayed. To this day, he feels a general mistrust of emergency room staff.

For children and youth with mental health needs and their families, patient profiling happens far too often. It happens in the emergency room and it happens in visits to medical specialists. One mom, whose daughter had both a diagnosis of depression and frequent migraines – for which she was seeing a specialist – waited four days recently in the emergency room because no inpatient beds were available. She was told that her daughter couldn’t receive migraine medication while waiting because that was drug seeking behavior And it was probably part of the bipolar anyway. The mother was frantic when she called us and very frustrated that her daughter’s care was all being lumped under mental health. She felt the emergency room staff had stopped their assessment of her daughter’s needs after they heard about the bipolar disorder.

This doesn’t just happen in emergency rooms. It happens with medical specialists who think that mental health concerns have caused medical symptoms. It happens when doctors call parents “enmeshed” or “co-dependent” and don’t see them as a resource and partner but instead as part of the problem. It happens when young people are seen as their diagnosis and not as a valuable self-reporter and critical thinker.

That said, there is a fine line between patient profiling that can help or harm. Doctors, nurses, therapists and other workers often form an initial impression based on their experiences or their training. They often need this starting point to determine a course of action. But – and this is the crucial piece – that starting point needs updating as new information comes in. A second impression or a third is often in order. When the initial judgment is incomplete or inaccurate and it is not revised, it can be harmful.

A cornerstone of good care is excellent communication. While this is often characterized as the doctor or medical professional communicating to the patient, it should be a two-way street. Mutual exchange of information is critical but so is mutual listening. In any human interaction, the only way we can truly connect is when we get past our snap judgments and see who is actually there.

When a child is in crisis or when her need for care is urgent, parents are rarely at their best. Most often, there have been many stressful days or weeks before this point which have worn them down. We rely on medical staff to see beyond the diagnosis to the whole child, teen or young adult. We trust them to see our committment and strength in the midst of the frenzy. We hope they will see us as a key member of the team, not as a “less than” parent to be held at arm’s length.

When this doesn’t happen due to patient profiling, we all lose.

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Bucking Conventional Wisdom in Mental Health

February 4th, 2015

strollercliffMy two hot buttons are pushed every time the topics of psychoactive drugs and forced treatment are brought up. The two are interrelated. First, there is an over-reliance and near worship of psychoactive drugs in our culture. The other is the problem of power and coercion, forced treatment intended to be helpful but ultimately damaging.

I am a single mom of two boys, both adopted as infants. They are now young men ages 26 and 20. My 26 year old, whom I’ll call Joe, has big gifts and big challenges. I’ve worked in and around mental health for over 40 years. Not as a clinician, but often in situations that created relationships with people with the life experience of mental health diagnoses and extreme states. As my son’s challenges began to come to light in kindergarten and first grade, I tried to call on that life experience and my optimism for his future. I confess I also tried to “fix” him although I would never have called it that. I thought surely if we get a handle on whatever is going on now, we’ll know what to do!

I came into this journey believing medication was a last resort, and I got a lot of lip service in that regard. However, I couldn’t hold on faced with the countless professionals in all manner of fields who believed medication would necessarily be part of any plan for him. We started medication in fourth grade, took a holiday in 6th, by the end of 7th he was back on them and remained so until he was about 23. I kept a running tally of medications tried for a long time. Not sure I got them all – but I have 27 on the list, often in cocktails of 3, 4 or even 5. He has had 13 years, literally half his life, under the influence of medications. He’s now been off all medication for 3 years.

I decided to write this after another blog about the Murphy bill. It opened with a brief story about a 19 year old stopping his medications wanting to know what he is like without them. I wanted to tell the 19 year old that he can find out what he is like off medication, just don’t go cold turkey. Seeing bad results in 12 days doesn’t mean you need medications for life! If you’ve been on as long as my son was, take a year or even more to come off.

My son’s last drug was clozaril . We both say the best thing about clozaril was it got him off everything else. As the psychiatrist was attempting to bring the dose up, my son began saying no, he wanted to come down. Eventually he just stopped. He calls it cold turkey because there was that final day of “I’m done!” but in truth it was a long, slow taper.

Life hasn’t been without bumps since then. But we have a much better class of problems and he’s experiencing a better range of feeling and functioning than he ever did on the medication – any of them. He has some very dark times that come on him suddenly, but he’s learning to manage those better and better. Connecting with others on the journey, learning about hearing voices (www.hearingvoicesusa.org) and alternative views about his experiences have been powerful and healing. Most important, these so called alternatives have revived hope.

I want to move to another subject and that’s the power dynamics in mental health, and in parenting into adulthood. I don’t feel 18 should be such a cliff. It’s not a surprise. We all know that it’s coming. Joe was the kind of kid who played power trips all along and so I had to adjust and find ways to avoid that. One way for 18 not to be a cliff is to release and become more of an observer and supporter earlier. For me the dance goes on — suggesting, supporting, cajoling and whatever other approaches occur to me along the way. I’ve found the most powerful thing I can do is just be present. We go for car rides in bleak and dangerous times. I might sit quietly in the room with him as he talks things out. It doesn’t have to make sense to me. But curiously, eventually, it does make sense.

Once when I was in an appointment –at Joes’ request– to hear an update on medication, the psychiatrist started talking to him very gently about how critical it was for him to stick with the (medication) program. She told him if he didn’t, he’d lose judgment…he might not even recognize that he was sick. Although this was a stage when I didn’t typically speak, I did speak up. “That hasn’t been my experience. Joe does know when he is struggling more and he reaches out for connection. Sometimes not in the greatest way, but he does know.”

I’ve thought about that brief conversation countless times, and it becomes more important each time I hear it in my head. I think it’s a terrible message to tell someone that they don’t know themselves, can’t know themselves – and believe me, I know when it looks like that! People can make sense of their experience and can be supported through extreme states without force. In fact, I believe force is tremendously damaging and I won’t play that card. No AOT or Roger’s Orders for us. There’s much more I’d like to say, but I’ll save that for another day.

Our guest blogger Marylou Sullivan is the parent of a young adult with mental health challenges. She is the Executive Director of the Western Massachusetts Training Consortium. Ms. Sullivan is a passionate advocate for people with disabilities.

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My Anger, No Longer My Danger

December 22nd, 2014

angrysadgirl4I have been angry for a long time, and I have let that anger overpower me without actually thinking about it. All I knew was that as awful as I felt, it still felt good to have something other than myself be in control, and I held on to it like a lifesaver while I tried to keep from drowning in the sea of heartache, loss and betrayal that became my life. Although I looked to the anger to save me, and even grew to kind of love it in a weird way, it didn’t come without a price.

With that anger came long and severe bouts of depression. Some days I was so desperate to stay home that I deluded myself into believing that I was physically ill, giving me the perfect excuse to cancel whatever plans I had for the day, or the entire week. I cried often, too; at home, in the car, in the grocery store, in my sleep. Everywhere. I knew I was angry and I knew I was in pain, but I didn’t know what I needed to do in order to make it stop, nor was I sure I wanted it to stop. I was comfortable in my misery. Of course, people were concerned and I got the attention I wanted and needed by outwardly expressing my anger. Other times, I was less dramatic, even secretive, and relied on my self-mutilation to communicate to those around me that I was in pain.

Very recently, a family friend took their life, and it was devastating and a real shock. I know what you’re thinking- this was my turn around. This was that life changing moment that made me realize that I didn’t want to be angry and depressed anymore, but that couldn’t be further from the truth. Their death, their choice to take their own life made me think that if it was so easy for them to just end it, then why couldn’t it be just as easy for me?

I started obsessing about the idea of suicide. I didn’t exactly have a well thought out plan, but I thought that if I could just do it, get it over with, everything would be better. So I spent hours on the internet researching everything I could about suicide- the history, famous people who’d done it, different methods. To be honest, I was completely frightened by the fact that I was actually considering suicide, but I was also being extremely willful. I felt like this might be the best option. It was either that or live in pain and perpetual confusion about how I was feeling for the rest of my life.

So I started a Pro and Con list to see whether the pros or the cons about suicide would outweigh the other. Some of the cons: I would never see my family again, never see my boyfriend, my rabbits or my friends. I’d miss the trees, the stars, the moon and Harry Potter. And the pros: no more depression, no more crying, no more hurting my loved ones, no more hurting myself, and best of all, I’d get to see my father. And that’s when it hit me. The reason I’d been so angry everyday for what seems like an eternity was because I was holding on to the day my father died, every day after that and all of the events that transpired due to his death. I was angry at him for leaving me, I was angry because it was, and still is, unfair that I’ll never be able to see him again and I was angry because life was hard without him. So I held on to that anger because it was like holding on to him, and if I let go of that anger, well then I was letting go of him, too. I thought that if I didn’t get upset while thinking about him, if I didn’t cry, then I didn’t care about him, and that somehow made me a horrible daughter.

After a lot of reflection and a lot of talking and exposure, I think I’m starting to see that I can live my life while missing my dad. I still have days that I can’t seem to shake this insurmountable grief that I have, but I’m finding that I am enjoying things that I haven’t been able to in a long time. I’ve ceased my research on suicide and instead replaced it with research on holistic living, something my father also cherished. I wouldn’t say that I’m happy now, that my anger is completely gone, but I’m getting there, and I can’t help but hope that my father would be proud.

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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