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Parent support is a basic need

When my son was 9 and his brother was 6, we moved back to Massachusetts.  They were both born and raised in southern California (up to then) and we liked it there. The weather was great and we had friends (though the number had dwindled because of my son’s mental health problems). But I was going through a contentious divorce, getting care for my son was a full time job and frankly, the most important thing in the world right then was support for me.  My own family was in Massachusetts and they offered support with open arms.

I was lucky, having a supportive family.  At times they were bewildered by my son’s behaviors and sometimes disagreed with how I picked what to ignore and what to stand firm about.  But they believed in me, believed I was a good parent and that a family’s job is to accept you. It made a world of difference.

Support is a small word that means a constellation of things.  It can look like education and information.  It can be advocacy and walking shoulder to shoulder.  It can be acceptance and non-judgement.  It can come from groups or be given one on one.  It can come from family and friends, formal parent peer support and sometimes, professionals with skills and compassion.

In children’s mental health, we talk about the needs and strengths of families.  Many families have basic needs as well. When we list basic needs, we usually talk about things that can be measured or delivered such as housing, food, utilities, transportation and clothing. Sometimes personal safety makes the list and sometimes legal help does as well.  Most of what is listed under basic needs is about survival or accessing things necessary to survival.

I think parent support, for those of us raising a child with behavioral health issues, is a basic need too.

I have talked to lots of parents who feel as if they cannot take another step.  They find it hard to get out bed, or feel profound sadness, or feel like they are one step away from emotional collapse.  I’ve known lots of parents who need therapy or treatment themselves and say they would have been okay without this emotionally exhausting experience.  I have even visited one or two parents in an inpatient unit.  I’ve met parents who go before the court and say,”Just take him, I can’t do it anymore.”  Please don’t say to them, ‘God doesn’t give you more than you can handle.”  It sure doesn’t seem that way to them.

Parent support doesn’t fix things when you get to that point.  But it sure helps. Often, it helps a lot.

When things are dire, or seem like it, parent support from someone who has been there is pretty wonderful.  Even though you intellectually know you aren’t the first to be in this position, you still feel pretty alone.  You’re not sure there is a route to a better situation and you have no idea how to break it down into small, doable steps.  You doubt yourself. Just like someone without shelter, you are out in the cold. Someone who has been through it has credibility, skills and compassion, all in one package.

Even though formal parent support can be superb, informal parent support can come from many places large and small.  It can be a reassuring story from someone who is a friend of a friend.  It can be a generous gesture.  Before I moved back to Massachusetts, I had a smaller move at a time when my son was having epic meltdowns 3 or more times a day.  Some people from my church took control of the details of my move and even ordered in pizza.  One of them said, “Your son needs you more than he needs you to pack or lift boxes.  So we will do that.”  I felt supported, cared for and able to keep dealing with my impossible day-to-day life.

When parents have support, their kids do better.  Mine sure did.  Pick up a book on self-care and you’ll read something along the lines of “put on your oxygen mask first.”  There should be an equal emphasis on “Let someone get you coffee” or “Let someone show you the ropes” or “Allow someone to tell you how lucky your child is to have you.”  The last one is the one I needed to hear most, because I rarely said it to myself.  It’s one of the things I make sure to say to other parents regularly.  They need to hear it just as much as I did.

When a parent raising a child with behavioral health issues doesn’t get her basic need for support met, she can’t parent the way she wants to.  If you are emotionally depleted, you can’t give any child what he needs, let alone your own child who needs megatons more.  You can’t do that do-si-do where you step in to nurture and step out again.  You’re not replenished and you simply just can’t. “You can’t give what you don’t have,” the adage goes.

Parent support is not a luxury or optional, it’s a basic need.  Systems need to build it in and parents should ask for it often.  We wouldn’t be shy about other basic needs, would we?

Googling parents like us

Have you ever googled yourself?  After you weed through the other yous, the ones you never knew were out there, you might find of things you had forgotten about.  Maybe you have an old My Space page still up.  It could be there are pictures online you had all but forgotten.

If you self-google, you might also find the other people who share your name.  In my case, the “other Lisa Lamberts” include a murderer, a dog trainer, a composer, a small business owner, a tarot card reader, a bartender, a banker and someone with my name who parties a lot.  Some of those are scary.  Some of those are intriguing, like the Tarot card reader.  Do you think I could I get a free session based on our shared name?

There is actually a name for this online activity.  It’s called egosurfing.  Some people do it for entertainment, some to find others who share your name (guilty) and some to see what information is out there that’s all about you.   Mostly, this kind of information is easy to find and can be part of how people form impressions about us, whether we are aware of it or not.

Have you ever googled something like “parenting a child with mental health needs”?  I have, because that describes me too, maybe more than my name does.

Most people are familiar – a lot or a little – with the facts about children with mental health needs.  They might have heard that 1 in 5 children has a mental health condition.  They might have read somewhere that 50% of all lifetime instances of mental illness begin before age 14. They might have seen in the news that suicide is the 3rd leading cause of death for children and young adults. Those are sobering and worrisome facts.

Not a lot of people stop to think that children live in families.  And that having a child with mental health problems has a huge impact on families.  They are the ones seeking help, dealing with the symptoms (behaviors) and worry, begging, advocating and persisting. The statistics about families are pretty compelling too.

Unlike when you egosurf, the facts and information about parents of children with mental health needs can be tough to find.  It’s not a subject that receives a lot of study and researchers aren’t elbowing each other out of the way to gather information and data.  But there are still some pretty compelling things to know.

Parents of children with emotional and mental health needs have the highest divorce rate of parents whose children have special needs.  Not really surprising is it?  We argue about whether to okay medication and what parenting strategies to try.  We spend so much time and energy just dealing with crises, schools, treatment and meltdowns that there’s not much left over at the end of the day.  We experience those stages of grief, anger, loss and denial at different rates and never in the same sequence as our partner.

The national survey of children with special health care needs reports that we are more likely to lose our jobs or live in poverty than other parents.  For many years, I used all my sick and vacation time to go to school and treatment meetings, visit my son when he was hospitalized and take him to the one pottery class that was willing to have him there.  I tried not to listen to other parents telling me about vacations that we wouldn’t be taking or how relaxing a three day weekend was. I remember one dad telling me they got an unexpected small inheritance from a great aunt. They had intended to set it aside for college, but ended up spending it on all the things insurance wouldn’t pay for.  Others give up promotions or stay in jobs they’ve outgrown because they need the flexibility and understanding their present job offers.

What does this mean?  A lot of us are single parenting and many don’t have the economic power we hoped would be ours.  It also means that parents are throwing most of the resources their family has – time, money, energy, other relationships – into the mix to see if it will make a difference for their child.

Googling doesn’t capture this at all. Search engines are wonderful for finding people, facts, images and so on, but not these particular facts or this specific information.  If you could google “parenting a child with mental health needs” and get a result saying, this is what your life probably looks like, it would probably surprise people.  Especially those other Lisa Lamberts next time they self-google.

3 questions for the ‘program kid’

Why don’t you like doing the things you once loved? Why do you shut down over seemingly basic things? Why does the GPS say 30 minutes but it takes you 45? These are questions I sometimes hear people ask me. The answers lay deep rooted in the long history of my life.

My name is Tom and I am a “program kid”. Over the past 11 years of my life I have been in over 20 residential settings, and over 15 schools. Some of them were good, some of them I can’t even begin to explain the trauma that has come from them. I won’t get into details, names, or locations. Though I hope to answer 3 questions I am often asked.

Question 1: “Why don’t you like doing the things you once loved?” When you arrive at a placement, they will try and get to know you and the things you enjoy. The first few times that was an easy question to answer. By the 7th or 8th program I didn’t want them to know me, and I didn’t want to know them. I’d had enough times doing the things I enjoyed and either being punished for it or judged. Unfortunately this only made me feel worse. I do enjoy the same things I once loved, but for much different reasons. I still love going fishing, for example. Not because I can be with my dad, but because I can be alone, in a quiet and peaceful environment. I still like wind in my hair because the white noise created by it rushing past my ears distracts me from the countless triggers around me.

Question 2:  “Why do you shut down over seemingly basic things?” You see, hear, and experience many things in program life. Most of it can be scary for a 7+ year old. So, when I hear glass breaking in the distance, “suddenly” my face goes ghost white and I can’t answer any questions. And when I hear someone scream or yelp in pain yet I’m the one in shock.

The best way to explain these happenings is with what I call a “time machine day dream” or better known as a “flashback.” It is as if I am picked up right out of my seat and placed in a program where glass shattered all over you and blood is everywhere. Screaming at night when a strange man walks in your room, but to no avail. I am barely able to write this, let alone experience it daily. This is why these seemingly basic things set me off.

Last, Question 3: “Why does the GPS say 30 minutes but it takes you 45”? The roads you take, I have been down. I will not, and cannot drive past that broken home one more time. The railroad tracks that are a simple non-occurance for you, remind me of a time I wish would be wiped from my memory. That pond over there? I almost drowned in it. This, and my photographic memory, consequentially make me extremely good with directions. I may be late, but I show up in a good space and ready to achieve the purpose of my visit.

I hope that these questions, one day, I will not be asked, and if so, my answer will be a simple, I do, I don’t, and I took 28 minutes, not 30. Until that day slowly comes, I hope that this gives some insight into how I live, and why.

Thomas Stewart is a member of Youth MOVE Massachusetts who enjoys creative arts and helping others.

Pain that frays the ties between us

“I can’t feel it, I can’t feel it,” my son wailed.  He was nine and just coming out of a meltdown.  He had cried and screamed, knocked over furniture and hurt himself, but that was the least of it.  His eyes had changed and when I looked at him, the boy I knew had disappeared.  He could hear me, he could talk but he was overwhelmed with his psychic pain.  It was like he was lost somewhere inside himself.

As the meltdown came to an end, I held him as I always did.  Touch worked far better than words but I spoke anyway.  I told him I was there and loved him.  He cried as he often did, “But I can’t feel it.”  My mother’s heart was breaking. At times like this all I could do was love him through it.  If the medications and therapy and all the rest weren’t working, I hoped that would be enough get us through it.  But, would it, if he couldn’t feel it?

Some mental health problems in children (adults too) fill them up so completely with pain that it overwhelms them.  I understood that.  But that inner pain could also sever him from me and everyone else at times.  You could see his eyes change so that even the visual connection was broken. His everyday self simply disappeared. Without that emotional connection, no matter how frayed it feels, you feel helpless and I felt helpless then and many other times. In those moments, I worried that I would lose him completely.

It’s common to say that someone is “suffering from mental illness” but we don’t use the word suffering in our family.  We do talk about pain, however We also talk about what we should do next or how much we love each other.  We recast psychological pain as a temporary thing (even if temporary lasts for months) that will respond to new approaches and cannot erode our constant connection to one another.   When he was nine, I knew that children and teens change often, outgrowing and leaving behind yesterday’s mood, whim or obsession and I hoped that time and change would be on my side

Physical pain gets far more sympathy than psychological pain. We wince or gasp when we see terrible wounds or injuries yet often look away from someone’s emotional suffering. Doctors are more comfortable when you come in with a medical problem, asking you to rate the pain on a scale of 1 to 10.  There is no such scale for psychological pain.

The McGill Pain Questionnaire, created in the 1970s to help people talk about their pain to doctors, provides lists of adjectives. Pain can be described as throbbing, tingling, suffocating, agonizing or flickering, to list just a few options.  Many people use this language of physical pain to describe the pain of psychiatric illness. It’s helpful, I think, once your child is older and their vocabulary grows.

My son’s pain during these childhood meltdowns was like a tsunami, overwhelming him and separating him from friends and family.  He would feel a constant, lower level ache or sadness or even despair, then an earthquake would come along creating jagged rifts in his life.  Afterward, he would often be limp and exhausted as he slowly came back to himself. He always did come back, almost as an act of will since I couldn’t tug him back through feelings he couldn’t feel.  I would watch him closely, worried he would remain separated and adrift. Worried that I would lose him.

He had bruises afterward though.  Bruises I couldn’t see, even though I could see them slowly healing.  The meltdowns, outbursts and emotional storms leave wounds and after effects just as real as a car accident or an awful medical illness.

Psychological pain still doesn’t get the serious acknowledgement that physical pain does.  David Biro writes in his article, “Is There Such a Thing as Psychological Pain? and Why It Matters” that science often relegates “psychological sufferers to second-class status” largely because scientists and doctors who study and treat pain “consider the experience a strictly physical phenomenon, in the sense that it can only be caused by injury to the body.” Yet people who have experienced both physical and psychological pain frequently say emotional pain can be far worse.

Some studies show that the same part of the brain lights up when we feel psychological pain as when we feel physical pain and something as simple as taking a Tylenol can lessen mental hurt.  I’m not too sure that would have been the answer for the kind of pain my son experienced, but it’s good to know.

Children and teens (who are we kidding? adults, too) express their feelings through behavior more often than through words.  They rage, withdraw, weep softly, sob hard, lash out, hurt themselves or put up walls to deal with psychological pain.  As my son’s mother, I felt his pain keenly and constantly.  It hurt, but it was part of our connection.  Those times when it overwhelmed him and separated us were the hardest times. Pain can isolate but, if we are lucky, love and support builds bridges and keeps those bridges strong.

Including parents should be part of effective trauma therapy

Some mornings as I drive to work, my mind wanders through my family memories.  I often wonder if my life is at all like other people’s lives.  I always think about my children first and then think of the many families and young people I have supported as they needed it. At times I think about all the kinds of therapy, services, supports and various medications that I have tried out. I think of the binders filled with IEPs, treatment plans, timelines and photos that I have taken to remember it all, and wonder if I remember all the facts. It can be hard with three children.  They are all unique and different but share one  thing – trauma.

Trauma is now looked at more and more with children (and adults) and there are lots of conversations about new supports, new research and new ideas. I have tried the Trauma-Focused Cognitive Behavioral Therapy approach, Eye Movement Desensitization and Reprocessingsensory dietAttachment Regulation and Competency and therapy after therapy. And you know how it works best? Including the family, especially the parent.

My child has received therapy in the residential setting and the community but when I have not been taught and included in the treatment, it really hasn’t worked most effectively.  Many therapists told me to focus on my trauma and they would focus on my child . The reality has always been that my trauma has already been worked on and the PTSD that I have incurred from going through the ongoing issues with my children has been just as hard.  The reality is that the one therapy where I was included resulted in both my son’s greatest gains and his ability to maintain his skills and improve in his journey.

Trauma has turned out to be so common that it is something more and more systems are identifying and seeking better outcomes. Is anyone noticing that when you include the parent, the treatment improves? Are we making sure the skills are taught to the parent so that the approach can be done during home time, day trips, holidays at home and more? Do people see the parent as an investment or a problem?  I would love to see more outcomes that look at how including parents helps the child. I absolutely know that improvement for the child is very much tied to the connection to the parent.

An underlying piece of the onion that no one sees and no one wants to understand continues to be the things many parents and caregivers do to make it feel safe for their child. It takes patience, understanding, empathy and sometimes just someone to show that they hear the parent and see them as the expert.  It has been the one area in my children’s life that has been a mystery to figure out.

As the brain develops things change, memories change, and behaviors to deal with it change too. My oldest son and I talk now about what memories we have and how we continue to feel lucky to be able to talk about it and how we are going to deal with it. Trauma comes up when you least expect it.

For us the biggest trigger is fire.  We remember a house fire that we were in. We are triggered by seeing the burnt house we drive by, a candle burning in a house, smell of smoke, a fire alarm and at times just people lighting a grill. It comes up and each of us deal with it differently. I approach it with a mindful approach, my middle son using the Attachment Regulation and Competency approach and my oldest using the Trauma-Focused Cognitive Behavioral Therapy approach. They are all correct and all okay- but without my understanding and embracing what works for them it would not work.

I appreciate being asked about trauma and talking to people about their approaches. It doesn’t go away. It is not the last peel of the onion for us– it is actually near the outside.

My last suggestions are the following:

  1. Include parents in your treatment model- teach them and include them
  2. Ask the parent what has worked and not worked
  3. If a parent asks for assistance to get outside support for trauma, help connect them
  4. Talk about positives that are possible so that parents know it gets better
  5. Remember that it doesn’t matter how large or small – if people use the word trauma LISTEN

Let’s change trauma to something we talk about and help.

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