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Drop the darn house, will you!

lollipop guild wizard of ozYou walk into the therapy session and know that your child is going to do whatever is needed to get that compliment or sticker afterward. When you have a child like mine, they go all out to get even more:  a reaction or someone to tell them that they don’t deserve it.  This is the one who challenges you into thinking that the mayor of munchkin city is the one that should be able to rule the whole office.

Parents like me know the reality of having over 5 different therapists in a single year who give up on a 4 year old. Other therapists are not really sure what to do and that, too, can turn out to be a nightmare for everyone. Reality hits home when people in the waiting room see you coming and tell their children to stay away from the “little” monster coming in.  Do you know what control looks like from a little one all of 4 years old?

The developmental stages of children are used a lot to explain a child’s behaviors to parents.  But they don’t explain that being super bossy and taking charge of other kids your age, or even older, can create social issues. Nor do they explain that if you are telling lies, you are not just “cute” or have a strong personality.  They don’t make it clear that when your  4 year old starts to push kids off swings and take control of the playground, well that’s not about social skills.   I remember telling our therapists these stories when my child was 4 years old.  I kept insisting that these things were not age related and definitely not developmental.  The therapist would say,” It all gets better by observing and following your example.”

What do you do when your child is 16 and it isn’t? What do you do at 18 and it isn’t? Where do you go and how do you explain it now?

Well, the lifesaver is that parents find other parents.  Sometimes it is not the local baseball team or soccer club or even the PTA in your town. Parents like me usually find other parents who are not even in their community, dealing with the same challenges while trying to figure out what to do next.

Did you know what when you try to be the parent you wanted to be you quickly find out that you have to change and adapt to your child’s needs? And while you learn about  trauma, emotional and behavioral health while experiencing it all at the same time, it feels like a never ending tsunami?

I enjoyed the article by Richard Donner that looked at the way parents of children with mental health challenges react to  “Welcome to Holland”  a poem by Emily Perl Kingsley. The poem compares the experience of becoming the parent of a special needs child with landing in Holland, when you’ve planned a trip to Italy.  You have to learn to accept the lovely things about Holland and accept you are not going to Italy after all.

In the article, Barbara Huff, the first director of Federation of Families for Children’s Mental Health, reads the poem and says, “I’d be relieved to know I was going to Holland or anywhere for that matter, but the reality is that the plane I’ve been on hasn’t landed yet and I don’t know where we’ll land. There aren’t any guidebooks and I don’t know what phrases to learn. About the time I think I know where we’ll end up, something happens. I would be happy to land anywhere if somebody would tell me just where.”  Her experience, the article says, is shared by many parents whose children have mental health needs.

It really is very different to wake up and walk out of your home with a child and you cannot figure out what is happening and the reasons on what is happening..

I remember times when I tried to explain to people what was happening and I needed to get them to understand that how my child was acting wasn’t because I was a bad mom.  I wasn’t a mom who did not care or want better for my kids. I remember people telling me that parenting classes would teach me what I needed to know.  Or they’d say that I needed to be more strict, or even put him in daycare with rule.  Yes, that would be better.

Really? I have gone to so many classes and continue to try and try just to get it right.  Sometimes it works for a bit then it shifts . It shifts for the same reason.  My intelligent kid figured it all out.  Even when I was consistent or strict, it didn’t seem like the answer.

So, as Richard Donner wrote, for parents whose children have mental health challenges it’s not as easy as adjusting to Holland.  Even when you plan, a disaster can appear – a runaway roller coaster, a tsunami, or maybe a tornado touches down in my back yard for me.  So, just drop the house and change our lives so that the mayor of munchkin city can be happier and not as stressed and most of all have lots of friends.

Meri Viano is our guest blogger.  She is the parent of two sons and a daughter who continue to inspire her blog posts.

Don’t pass by

sad seated girlWhen I was in middle school and early high school, I would see kids in my grade who were struggling emotionally, and I would turn away, pretend I didn’t see their pain, and not give them another thought. I would feel bad, but I didn’t know what to do with that, and I certainly didn’t want my friends to think I cared about the super weird kid in math class who kept to herself. Teenagers can be cruel, and no way was I risking my somewhat okay level in the middle school social economy by showing compassion for someone who was so obviously different, strange, and maybe even dangerous for all I knew. No, I desperately wanted to fit in, and my status with my friends would not be jeopardized by some “emo kid.”

Three years later, I became that “emo kid” who got words like “bi-polar” and “crazy” and “weird” thrown at them as weapons instead of truths. I had my first episode, though it would be 10 years later before the mention of bipolar was brought up in a clinical setting as a feasible diagnosis, and the world as I knew it fell apart. My friends grew more and more distant as the hospitalizations piled up, and I would have given absolutely anything for a visit from my family. Everything I thought I knew about myself suddenly became symptoms of my anxiety, depression, and mania. You mean not everyone is absolutely terrified of social situations but sucks it up anyway? You mean I’m not supposed to consistently want to die at least half of every day? And you’re telling me I’m not supposed to wake up 8 to 10 times every night with bad dreams? And not everyone’s mood goes up and down as quickly as mine?

I found myself sinking deeper and deeper into depression with all this clinical exposure, and when I wasn’t in hospitals, it became harder and harder to pretend to everyone at school that I was doing well. I had appointments during school hours that I played off as doctor appointments, but were really specialists and evaluators to help with my psychiatric treatment. My grades were starting to reflect my absences as well. I was silently suffering, and no one at school bothered to ask how I was.

If I could change anything about my actions in life, it would be how I passed by that girl in middle school and did nothing as people ridiculed and ignored her. Because now I know what it’s like to not have a friend in the world to count on, and I know what it’s like to feel different and strange and unwanted by everyone you know. And how all you want to do is curl up in a ball and die, but you keep going anyway. Now, I don’t see that girl as strange, or weird, or dangerous. I see her bravery and resilience in visibly fighting a fight that none of us understood, but finding the strength to do it anyway.

Everyone who has a mental health condition, is fighting that fight in some capacity every day. Whether it’s hanging on for one more day when all you want to do is disappear forever, or dealing with those awful voices in your head that just won’t stop and are often very scary. Or going through trauma therapy or trying to get over your anxiety. Or even just talking with someone when you need to, or helping someone you think might need it. These are all very hard steps, and if someone, anyone, at school had stopped for me instead of passing me by, my journey might not have needed to take as long as it did.

It wasn’t until I was in the same shoes that I found my compassion, but it doesn’t need to get to that point. After all, we are all fighting something, some of us are just better at hiding it. Be kind. Be compassionate. Be open to embracing differences, not afraid of them. And don’t pass by.

Our guest blogger is a young adult who wishes to write anonymously.

Slapped by stigma

pointingHave you ever been slapped in the face by someone’s prejudiced thinking about mental health needs?  That’s called stigma.  It first happened to me when my son was seven.

My son spent a lot of his 7th birthday party lying on the floor at Chuck E Cheese crying and saying, “I don’t deserve to live – I want to die.”  Like his friends, he would race excitedly from game to game, then run back to me to say, “Guess what I won?”  Then his mood would plummet and I’d see him drop to the floor, disconsolate.  His friends would stop next to him and try to cheer him. Not long after, he had his first inpatient stay.

A year before, we had moved into a newly built housing tract.  The school district was good, the neighborhoods were designed with curving streets and cul-de-sacs, which made them perfect for families with young children who rode their bikes and skateboards.  All the houses around us seemed to be filled with kids the same ages as my two sons and they were soon traveling as a posse to one another’s houses to play with this game or try out that swing set.  Families invited each other to parties and outdoor barbeques.

After my son’s hospitalization (which lasted nearly a month) he insisted on going to each of his friends’ houses to let them know he was home and available to play.  I asked him what he was going to say.  “They told me at the hospital that lots of kids go to the hospital to have an operation or because they are sick,” he said.  “It’s just like that, except it’s your feelings. It’s okay to talk about it.” I felt that little clutch in my stomach that mothers get when they worry.  But what did I know?  This was a new world for us and if the “experts” told my son it was okay to talk about his hospitalization, then I was going to defer to them.

He set out on his neighborhood journey, going from house to house while I stood a little distance behind him.  He did great, shaky a few times but was met with smiles and nods for the most part.

Not long after we got back home, I got a call from Denise’s mother.  Denise was doted on by her parents and had been born some years after her older brother. They lived cater corner across from us and she played often with my son.  Denise was perfectly dressed, her blonde hair done up in dozens of new ways each week.  Denise’s mother was not all smiles and nods on the phone.  She told me that although she felt sorry for my son, Denise was not allowed to ever play with him again.  If he came to the door, he would be turned away.  If he called, the phone would be hung up.  If he was playing in their neighborhood group, Denise would not be allowed to join in.  In fact, she added, she would appreciate it if I told him when he walked in front of their house to please use the sidewalk on the other side of the street.   The rejection couldn’t have been more complete.

I told my son a gentler, highly-edited version of the conversation and it’s something he doesn’t remember today.  But I do.  My judgemental neighbor went from embracing we-are-all-raising-our-kids-together to making it very clear that there were two groups now, “us” and “them.”

Many people believe that there is less stigma today around mental illness, treatment and even psychiatric medications.  They point to the growing number of stories that people like me tell of their own experiences, or that people with their own lived experiences relate.  These stories don’t just provide a name and face, but details about what works and how it feels to experience the slings and arrows of a very tough mental health system.   But an experience with in-your-face stigma changes you.  You lose patience with slow change. You can’t go back to thinking that it’s lack of education or inherited attitudes.  It’s more than that.  Stigma is an ugly thing.

Researchers say stigma is a term “which has evaded a clear, operational definition.”  It actually has three parts:  lack of knowledge (ignorance), negative attitudes (prejudice) and excluding behaviors (discrimination).  Like many others, my son and I have experienced all three.

Stigma is not just carelessly using words like crazy or psycho. It’s shunning like my son and my family experienced.  One mom told me recently that her child was ostracized by her ex-husband’s entire family, who wished to hide her son’s mental health needs.  It’s seeing your child shunted to the psych evaluation room from the emergency room as soon as they hear the mental health diagnosis.  Another mom recently wrote, that even though her daughter overdosed on pills and was violently ill in the emergency room, “they stuck her in a psych room with a security guard” because they “thought she was faking it.” It’s being denied opportunities like the parent who told me she had to choose between a therapeutic school with a stripped down curriculum, or an academically challenging one with no therapeutic supports for her brilliant, beautiful daughter with extreme mood swings.

The hurt caused by an experience with stigma stays with you for a long time.  You feel a little more mistrustful, a little more righteous anger and have warring impulses between disbelief and cynicism.  I’m hurt, you feel; this is unjust, you think; this must stop, you realize.  We need to keep telling those stories, we need to keep waging our awareness campaigns but we need something more.  We need warriors.

 

Emergency rooms, security guards and silver linings

silver liningAs Children’s Mental Health week begins, I find myself thinking about my journey into the mental health world.  Almost 17 years ago, my husband and I adopted triplet sons. They were 2 days old the first time we held them.  Their birth mother handed them to us on Mother’s Day.  Since that day, I have always proudly proclaimed, “You will never meet anyone who received a more incredible Mother’s Day present!”  I still believe this.  What I didn’t know then was what an adventure the coming years would be!

From birth, my sons have been high need.  They were 6 weeks premature and were delayed reaching their milestones.  They displayed signs of sensitivity and hyperactivity very early on and were all diagnosed with ADHD combined-type before the age of 3.  In preschool, we noticed that they were not typical learners.  They were all diagnosed with dyslexia prior to the start of first grade.  Since then, they have all been found to have dyscalculia, dysgraphia, delayed processing, short-term memory deficits and, two have Tourette Syndrome.  We began advocating for their educational needs very early on and continue to do so almost every day.

They were also followed by a behavioral pediatrician who prescribed various medications for their hyperactivity and focus.  These helped sometimes and other times, the medications just exacerbated their behavioral problems.  Children with learning disabilities often experience anxiety and depression and this was the case with 2 of my sons.   Tourette’s has also caused “rages.”  Throughout the years, I have sought help from mental health providers who, at best, were unable to help and, at worst, just stopped returning my calls, leaving me feeling frustrated and helpless.

Three years ago, as my sons were dealing with adolescence, things began to unravel and eventually “blew up.”  One of my sons went into a prolonged depression, refusing to go to school, rarely eating or talking.  I desperately tried to find some help for my son.  His behavioral pediatrician felt she couldn’t adequately support his rapidly escalating mental health needs any longer.  Finding  an outpatient psychiatrist became an insurmountable task.  Most providers did not accept our insurance and the few that did, did not have openings or had very long waiting lists.  My son continued to deteriorate and when I feared he might hurt himself, I ended up taking him to our local emergency room.  It was a nightmare—the first of many that we have endured since. I am an RN who has worked in hospitals providing direct patient care for 40 years so my sons’ ER visits are viewed through this lens.

My son was 14 years old at the time of this incident. He was depressed and withdrawn.  In the ER, he was required to remove his clothing, including a sweatshirt that he always wore for comfort. He was placed in a “psych room” which was stripped down to a stretcher and a TV which was covered with a mesh screen.  We had no way to turn it on.  There was a camera in the room which was monitored by the hospital security team.  His room was directly across from the bank of screens for the psych area.  Hospital security used this area to socialize with other employees, often being loud and making inappropriate comments.  We heard them making fun of other patients– one of whom was a very young child who had been removed from his home by DCF and they laughed as he painted himself with feces.  I witnessed security guards allowing a housekeeping employee to watch while they all talked about the patients.

When I told them we could hear them and asked them to lower their voices, I was told to return to the room.  When I was leaving the room to make a phone call, the head of security made an inappropriate joke to me about a patient, and, when I gave him a dirty look, he insulted me. When I couldn’t take it anymore, I sought out a nurse and asked her how to get in touch with the Patient Advocate.  Instead, she told the Head of Security I was going to complain.  He then proceeded to follow me around, making rude comments.  I did eventually meet with a nursing supervisor, who admitted that she had no control over security but promised to try to help.  We were moved out of that area but felt intimidated by the security guard who was now posted at my son’s door.

We spent three days in that ER room awaiting a placement for my son.  I still shudder when I recall that time.  Unfortunately, every time one of my sons has had a mental health crisis, he has been taken to that emergency room  and had similar experiences.  I always fear retribution by the security team. There have been many times that I have not called emergency services out of fear that they will call 911 and force my child to go to that ER. Usually it ends up being a very expensive ambulance ride followed by discharge shortly after.

Living in the Boston area, we are very lucky to have some excellent teaching hospitals.  On several occasions, I brought one of my sons to a well-known pediatric hospital but, honestly, our experience was not much better.  One time, after finding my son had destroyed his room and was in his closet and would not respond to me, I called his behavioral pediatrician.  She advised me to bring him to this pediatric hospital to be evaluated (after I refused to go to the local ER).  Instead of helping, I was asked over and over and over by multiple staff members why I asked my son, “Are you safe, are you going to hurt yourself?”  I kept saying that I was concerned for his safety, as was his doctor.  Their focus was entirely on me, not my son….I was confused and scared.  They kept asking me to leave the room and, even before I was out of hearing range, I could hear them asking him if I he was safe with me. At one point, the room had 4 staff and again, they asked me, “What would possess you to ask your son that?”  I responded, “The pediatrician told me to ask him, besides, I’m a nurse and we ask patients that question all the time.”   They all said, “Ahhhh, she’s a NURSE….”  Apparently, that was his diagnosis, “his mother is a nurse” since he was discharged shortly after.   I just wanted to get out of there since we were not going to get any help.  We have had other visits there that were similar.

Most recently, the second born triplet began experiencing a lot of issues as well.  He has also done the ambulance to the local ER scenario, followed by being put in the room across from the security screens…aka the staff’s comedy show.  Nothing has changed, nothing ever helps.  When I brought this son to an appointment at an adolescent clinic to deal with misuse of electronics, he became very agitated and was saying he was going to “hurt his brothers.”  The doctor warned him that he should not be making threats but he wouldn’t back down. (He was mad but he has never intentionally hurt anyone.) The doctor decided to section him and send him to the ER for further evaluation.  Instead of telling me this, they had me leave the exam room under another pretense. When I tried to leave the room I waited in, I was shocked and horrified to see my son being paraded out of the exam room with several security guards, several Boston police and EMTs and put on a stretcher then sent by ambulance to go across the street to the ER (cost= $850!!). His head was down and he looked totally humiliated and defeated as he was paraded in front of dozens of supposed professionals, all gathered around, pushing forward and craning their necks to see “the show.” None of them needed to be there nor should they have been.

In 40 years of nursing, I have never done such an unprofessional, demeaning thing to a patient and I work with adults–not immature, fragile adolescents in an adolescent clinic.  The ER staff was respectful.  I learned later that the doctor who my son was seeing had called ahead to explain the situation and that was why he had not been able to warn me.  Security, on the other hand was invasive– literally leaning into the room and joining in on conversations between my son and I.  Also, to his credit, the clinic doctor e-mailed to check in the next day and, after I told him what had happened with the clinic staff, he said he was planning a staff meeting to review the incident to try to prevent such behavior in the future.

I can’t possibly describe all the visits and interventions.  In general, I have found emergency rooms are NOT helpful but, when growing teens get out of control, I have no choice at times (with police comes the ambulance).  We have been lucky enough to have some very supportive in-home therapists but the turnover is frequent.  We have also had some positive interactions with emergency services though, as my boys have gotten bigger and more destructive, they usually will not come to our home.  I try to avoid calling them as on a couple of occasions they called in 911, forcing my son to go to the ER.

I wish I could say that things have stabilized but they haven’t.  As my sons race towards the age of 18, I worry what will happen when they are considered “adults.”  We are debating medical guardianship and other options.  I research and read and worry.

So, as Mother’s Day approaches, I think about the past 17 years and, yes, it has been a lot of work, and tears and worry but…..I have 3 sensitive, funny, loving wonderful boys who are growing into awesome young men.  I get through the bad times by looking for “silver linings” when things go wrong. This is my version of resilience.  The ill-fated visit to the adolescent clinic happened on a late afternoon. As we were driving into Boston, I was mumbling about the terrible traffic which was only going to be worse on the way home.  I was whining about all I had to do that evening and how long it would take to get home.  Driving home later that evening, after spending many hours in the emergency room, my son, who had been through quite an ordeal turned to me and said, “Hey Mom, I have a ‘silver lining’ for you.  We missed rush hour traffic!!”  I love my boys!

Our guest blogger has chosen to remain anonymous.  She is the mother of three teenage sons, loves music and hopes her story helps others.