All posts by Lisa Lambert

Eeyore

My Connection to Eeyore – Depression and Friendship

EeyoreI always felt a connection with Eeyore when I watched Winnie the Pooh as a child. He was my favorite character, and I’d always get very quiet when he would come into a scene. I would watch him intently, and would listen closely to the words he spoke.

I never gave much thought as to why he was my favorite character. Now that I am older, I feel the reason I loved him so much is that he was depressed and although at the time I couldn’t put it into words, I was also depressed.

He was always feeling down and seemed to have a negative view on the majority of things, even in the magnificence of living in the Hundred Acre Wood, surrounded by all of the people who loved him. He had friends who loved him dearly, and yet, he was still depressed.

I feel that the only difference between me and Eeyore, truly, was that he had friends while I did not. Sure, I had family, but I didn’t have any friends or at least didn’t have friends who could understand my feelings and love me anyway.

Eeyore is still a character I can relate to. I still feel trapped in this endless cycle of depression, even after all these years. The thing that is much better is I now have friends who I can share my experiences with, and they love me no matter how depressed I am. They listen and they empathize with me.

I guess what I am trying to say is, I still have depression, and I still have a negative view on certain things. However, I came to terms with the depression, and through that, met and befriended people who have similar experiences to my own. We share, cry, laugh, and make each other feel better. So, even though I’m still depressed, I am still here due to the love and acceptance I have found in others.

Rachel is a young adult who has aspired to be a writer her whole life, She lives at home with her mother, father, and 6 wonderful animals.

Breach of trust, breach of privacy

“I was walking down the aisle of the grocery store,” Greg said, “and in the next aisle I heard my son’s teacher telling someone the details of his abuse.”  I was driving Greg, a dad of three, to a local radio station where we were going to be on a talk show about children’s mental health.  We had only met over the phone and quickly told each other the brief version of our lives:  how many kids we had and what kind of mental health issues we grappled with.  The conversation quickly turned to our war stories, the stories of hardship and crisis, partly to prep for the interview.  That’s when Greg told me about overhearing the teacher.

Greg was a single father of two boys and a girl, all of whom had different diagnoses.  His second son, his middle child, had the most on his plate.  He’d had several psychiatric hospitalizations, rotated through several medications and bounced around among therapists.  Right now, Greg was trying to get his school system to see that the child they had enrolled a couple of years ago was a far different child with more serious needs.  He had debated with himself, then told the school the details of his son’s story, hoping it would create an “aha” moment.  I’m sure it did, but it also led to a privacy breach.

Greg and his wife had divorced when the children were small and they had gone to live with their mom and her new boyfriend.  He saw them irregularly.  Greg moved in and out of the state, had several jobs where he tried out a few things.  Some were successful, some weren’t.  Then one day he got a call saying there had been charges of physical and sexual abuse against his ex-wife’s boyfriend and could the children come live with him?  He immediately agreed, somehow thinking that his children would be the same as when they were preschoolers, just older versions of the children he had lived with every day.

They weren’t.  Each of them had been through a lot and expressed it differently.  His oldest son kept saying everything was fine but had nightmares at night.  His youngest, his daughter, was clingy and didn’t want to let him out of her sight.  His middle child had received the brunt of the abuse and alternated between hurting himself and exploding with pain and anger.  Greg, bless his heart, had to learn three different styles of parenting in very short order.

The day he heard the teacher telling someone the graphic details of his son’s abuse, the child was with him and heard it too.  The boy began sobbing and curling in on himself.  Greg told him to wait with the grocery cart and stalked over to the next aisle where he had a few choice words to say.  He felt a little better but he couldn’t unhear it and neither could his son.  Neither could the person who was told the story.

Parents tell me over and over again that they simply don’t trust school staff with their child’s mental health information or history.  They worry – without knowing Greg or his son – that something similar will happen and they fear it will hurt or infuriate them.  There are exceptions to this – parents report that they trust special education teachers and school nurses to a great degree.  Sometimes there are individual teachers who “get it” or have raised a challenging child of their own.  These are the people who translate the symptoms, like Greg’s son’s meltdowns, into working diagnoses and unmet needs.   But they seem to be a small group.

Things happen to children through no fault of their own, resulting in trauma and difficult behaviors.  Sometimes things happen within children, too, that are beyond their control, such as overwhelming moods or crushing anxiety or ping-ponging thoughts. Until they learn tools and strategies, behavior is often their only way to let others know how they are feeling and what their needs are.   In savvy schools, teachers, guidance counselors and aides can be “first identifiers” and spot the things that should concern us and raise the red flag.  In schools like the one Greg’s son attended, that seldom happens.

Parents worry a lot about privacy.  Information about us is collected by everyone, or so it seems, and your children’s information is gathered without their consent. (Often without a parent’s consent either.)  Some information doesn’t intrude into our lives very much so we shrug it off.  For instance, I really don’t care if my transponder tells EZPass how many times I’ve crossed a toll bridge or driven a certain highway. But other information is much more sensitive and can shape how people see us.  Personal mental health information still carries a powerful amount of stigma.

Some mental health advocates say that we should all tell our tales of mental health and mental illness openly. It is, they argue, the only way we will reduce stigma and raise awareness.  Every time I hear that, I think of Greg.  He thought by telling the school about his son’s trauma that he would create compassion.  He expected that the team working with his son would respect his privacy.  The day he heard the teacher talking in the next aisle and watched his son sobbing, he changed.  He learned to tell just enough but not everything.  He learned that sometimes the risk of sharing his story can be too great.  He learned that while our stories can create powerful change, emotional safety matters too.

Serial waiting

I read a report last week about the complicated and onerous waits for outpatient mental health care in this state.  It was a thoughtful report from the Blue Cross Blue Shield of MA Foundation, thoroughly researched.  It told me what many parents already know:  we wait far too long for mental health appointments for our children (and ourselves).  In fact, if you add up all the days and weeks and months you spend waiting, you’d have a nice chunk of time all to yourself, or to rescue homeless kittens, or learn how to use an InstaPot.

It struck me that even the best reports fail to capture an experience most of us have.  I call it serial waiting.  It’s waiting first to get an appointment with a therapist.  It’s waiting to get an appointment with a new therapist when that one leaves.  It’s waiting to get an appointment with a psychiatrist so you can see if medications are part of the answer.  It’s waiting in emergency departments for an elusive bed.  We don’t wait once, but again and again. Serial waiting takes its toll.

The first part of your wait is that long process where you get a list of names, wade through them, cross some off and wait for calls back from the ones who work with children or take your insurance. At this point, you think anyone who works with kids will fit the bill – you are no longer willing to be picky.  Later, as you understand how complicated  and unique your child is, you again go through the process of finding a match, this time looking for someone who has experience with bipolar disorder or school refusal or sensory issues.  Then you wait once again for a slot.  You wait next for a neuropsychological evaluation or an appointment with a psychiatrist.  You get frustrated, impatient, angry, argumentative, cajoling and persistent.  But if it shortens up that wait, you feel okay with getting emotional.

When my son was 12, his psychiatrist went back to Kansas where his roots and family were.  We looked for a new doctor and were turned down by a major institution because my son needed frequent visits and their scheduling didn’t allow that.  We were turned down by a another doctor who thought my child was too complicated, by another who was not taking new patients and still another who only saw children who were 16 or older.  The wait stretched on and on before we finally got an appointment.  The psychiatrist who finally agreed to treat him was awesome, unfazed by his complexity.  I told myself she was worth the wait.  Lucky for us, she really was.

Serial waiting has nothing in common with serial killers, except for one thing.  Serial killers have a pattern where they kill, have a cooling off period and then start up again.  This pattern is a lot like serial waiting, except there is no killing involved.  (Sometimes you feel like you are uselessly killing time, but that’s a different thing.) We have that cooling off period, too, then we find ourselves frustrated and waiting once more.

Not a lot helps shorten the waits.  It’s not a matter of being more skilled or doing more research.  Most of it is out of your control.  There simply aren’t enough clinicians, doctors and mental health workers to meet the demand.  When we look for the next person to provide care for our child, we go to the back of line each time.  Personally, I’ve never become better at waiting.  As a parent, you feel it’s your job to get care quickly, especially once you’ve identified the need.  Many of us pay a hefty amount each month for health insurance, expecting that treatment will be available when needed.  We know that waiting a month for therapy or four months to see a psychiatrist is a huge chunk out of a child’s life.  Once you make it through the wait the first time, wait #2, #3 or #ManyMore are even less appealing.

In the medical world, they talk about uninterrupted treatment.  People with chronic illnesses like asthma, diabetes or heart disease are told firmly not to discontinue medication, lifestyle changes and other care.  In the mental health world, uninterrupted treatment is like a unicorn, aspirational and mythical.  In reality, waiting for a new therapist means that the parent becomes the quasi-therapist.  Waiting for a new psychiatrist or nurse practitioner means cobbling together a prescribing plan to span the gap.  We do this again and again – it’s another component of serial waiting.

Serial waiting wastes a lot of time.  What’s more it squanders our faith in the mental health system (such as it is) and our hopes that while the process moves slowly, the results will be worth it.  Earlier this summer, I asked a lot of parents what waits for care was like for them.  Parents said they had to wade through lists of practices that didn’t take kids, practices that did take kids but weren’t taking new patients or no longer took their insurance.  One parent said several people on the list provided by her insurer had died. If some politicians worry about people who have died voting in an election, aren’t insurers worried about people who have died offering therapy?

 

youth

Abuse Doesn’t Define You

youthPeople say that growing up with a hard life makes you a hard and difficult individual.  One, that is absolutely not true.  Two it’s all in how you make life the way you choose it.

I didn’t choose to be physically and sexually abused but I couldn’t control my birth parent’s ways, reactions and other addictions.  I guess being the oldest one of two, it just came that way. Also having to feed my baby brother as a toddler shouldn’t be the way stuff happens. Like I said, I couldn’t have all that control.

I wish that kids, youth, young adults shouldn’t have to go through some of the crap that goes on in our early life and sometimes struggling lives. But like I said, we can’t always control what goes on in this world. But there’s one thing that we can do and that’s control ourselves.

I control who I am, what I do, and how I make it too the next day and the next. And all you have to do is keep your head held high and walk away and you can do anything: change the world, be a doctor, lawyer or whatever you want. You just have to remember one thing and that is JUST DO IT.

Our young adult author would like to remain anonymous.

Transition

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.