I only forget the little things. More or less.

March 10th, 2019

“Oh, no!” I groaned inwardly.  “I can’t believe I forgot this again.”  The dentist’s office had just called to let me know that I was supposed to be there for my appointment.  I had intended to go, I’d even mentally reminded myself the day before.  But my son refused to get on the van for school that morning and it had been another horrible morning.  Until they called, the appointment had vanished from my mind.

This happened quite a few times when I was parenting during the really tough times.  While I forgot my own appointments from time to time, I was religious about taking my son to see his therapist and psychiatrist.  We were late a few times, but didn’t miss even one.  I might forget to pick up my allergy medication, but never forgot to get his prescriptions. I missed haircuts, the dentist and even vet appointments for my dog.  I would kick myself mentally and do better for a while.  Then my son would get worse and I’d forget once again.

One time, when my son was about six months old, I stubbed my toe and began to fall while carrying him outdoors.  I was walking on our scorching hot driveway in July and I frantically twisted my body so I would take the brunt of the fall. I crashed down but held him aloft the entire time.  I ended up with a badly scraped leg and elbow but he was just fine.  Forgetting my appointments but never his, was a version of this.  Keeping him safe, getting what he needed was the top priority.  Sometimes it was the only priority.

One day I came across an article about stressful life events which mentioned a stress inventory test.  Any article that had the word “stress” in the title drew my eye immediately.  According to the test, events that caused major stress included the death of someone close to you, going to jail or getting a divorce.  I also noticed that high stress events included happy things such as marriage or pregnancy.  Experiencing many stressful events resulted in a high score and a high score meant you were at risk for stress-related health problems.  Although parenting a child with mental health needs isn’t specifically on the list, items like change in financial state (check), increase in arguments about child raising (check) and change in health/behavior of a family member (double check) certainly are.  What happens, I wondered, when you get a really high score year after year after year?

Parents of children with mental health needs have a dark sense of humor and this become one of my go-to jokes.  “My stress points must have hit 1000 and it’s only March,” I’d say, or, “I’d like to get some points for a happy event this month.” A few times, I’d jokingly tell a friend that I was getting close to setting a record for stress points and I sure hoped I’d receive a great vacation instead of getting sick.  Neither happened.

However, I did get small, strange physical symptoms of stress.  A few times, I woke with my upper lip swollen like I had been stung by a bee.  It would usually go away by the next day. Another time or two, my eyelid would twitch on and off all day.  I was sure everyone else could see these strange twitches and swellings but for the most part no one really noticed.  I learned, however, to pay attention. If I didn’t, they came more often or lasted longer.

Caregiver burnout is when the stress of caregiving results in physical, emotional or mental exhaustion. But this catchy term doesn’t begin to describe the impact of raising a child with mental health needs.  Partly, it’s the unpredictability.  Each new medication might work a little, a lot or not at all.  Even worse, your child might have miserable side effects.  A new therapist might not click, might last only a short time or be wonderful.  Same with school programs, treatment protocols and hospitalizations.  Or even several of these things at once.  And, just when you think you have a thing or two under your belt, you find yourself with a new cast of providers, a new diagnosis or new behaviors you’ve never seen before.  You rarely reach a state of equilibrium.

Weddings, births, work changes and even mourning a death have different rituals attached to them to help you understand what’s happening and what to expect next. They may be stressful, but others have gone through this and tell you what to do and what to avoid.  For most of us parenting a child with mental health needs, there’s no marked trail.  If this were an item on the stress inventory test, it should be right up there with a weighty number of points.  It certainly had an impact on my memory and me.

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Looking at the eyes while parenting

February 15th, 2019

When my son was born, the nurse in the hospital told me he was an old soul.  She could tell, she said, just by looking in his eyes.  My mother backed her up.  She said she could see all the wisdom and acceptance he was born with and wasn’t it a shame that he would lose that as he got older.  All babies have this pure, precious gaze she noted.  Me, I just cherished those moments when I was holding him and he would look deep into my eyes, absorbing me, letting me absorb him.

Fast forward to elementary school.  By the time my son was seven, I was talking about his eyes in a very different way.  I told his therapist that his eyes changed when he was having a meltdown.  That it was as if a different child was looking out, one I often couldn’t reach.  When he would have panic attacks, fly into rages or harm himself, his eyes would change before, during and for little while after.  I watched his eyes to predict how intense it would be and whether I had a chance of averting what was coming.  Sometimes, though not often, I did.  And when things had returned to normal, the look in his eyes did, too.

The eyes don’t lie.

Later there were mornings when I’d wake him for school and when his eyes opened, I’d just know.  In some ways, they looked like his mischievous toddler eyes, sparkling when he was about to be silly. There was a light to his eyes, but it wasn’t always innocent.  He would want to take chances or ignore danger.  He would charm people into breaking the rules for him.  Sometimes, he seemed like a ticking bomb or a piece of fragile crystal.  I could tell by his eyes to handle him with care.

Then there were the times when he wasn’t wild, just angry and hurt.  Not a normal anger rather, a rage that burned out of control, tantrums that lasted for up to two hours or more.  Not just a normal hurt instead, the kind where, as he used to say, “I want it to hurt as much on the outside as I do on the inside.”  His eyes didn’t sparkle, they were flatter, darker and sometimes cruel. He might say awful things to me, he might be destructive.  More than once, I would watch a room get dismantled – chairs overturned, sofa cushions thrown across the room and anything small enough hurtled through space.

Then he would come back to himself and his eyes would be his own.  They would soften, they would be clear and they would provide a connection instead of a wall or shield.

I thought I was alone in this.  Then one mom told me how her son’s eyes would change and it was as if he vanished somewhere.  “It’s like I’ve lost my child,” she told me.  “When that happens I am always on my guard because I don’t know what he’ll do.”  Not long after another parent echoed this saying, “I always watch her eyes. When they begin to change, I brace myself.”

Julie A. Fast, author of “Loving Someone with Bipolar Disorder” writes about this phenomenon for BP Hope.   She writes that depression and mania both profoundly affect the entire eye, from lids to lashes.  She has observed that there are three clues to recognizing mania in the eyes. (My own guess is that parents, who are the supreme experts on their children, observe many of these changes when their child’s mood shifts, even if no one has clinically named it mania.)

Clue #1 is when you see sparkling eyes, maybe even with shimmering flecks in them so they light up.  This was the look my son had when his eyes would sparkle and he would ignore signs of danger.  On one school field trip he said he could walk across a busy Boston street and be unharmed because the cars would simply avoid him. We had to hold on tight to keep him from testing that theory.

Clue #2 is when you see the eyes become darker and for some, the pupils become wider.  This is what my son’s eyes looked like before he had rages, when he hurt so much he wanted to hurt everyone and everything around him.  It’s when his eyes almost looked mean and flat.

Clue #3 is when you notice the eyes changing shape.  They can widen with euphoria and narrow with suspicion.  The person sometimes doesn’t look like themselves.  You wonder, looking at your child, if it’s really them in there.

Throughout his childhood I was told my son had beautiful eyes with long lashes.  I smiled because I was always pleased to have his strengths noticed, beautiful eyes among them.  But it meant they were observing his eyes, even if it was in a quick glance.  When I was told this, I would always turn my head and focus on his eyes.  When they were his own clear eyes, I’d smile.  But sometimes his eyes were clues.  Those times,  they were the best early warning system I had.

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Giving trust, losing trust. Does it make a difference?

January 28th, 2019

I remember that moment when I realized that there was no way I could do this without help. I had tried every technique I knew, been patient, yelled some, loved my son with all my heart and absolutely nothing got better.  He was only six, I thought.  Maybe there is one more thing, something overlooked, that I can try?  But there wasn’t.  I had exhausted what I knew and needed help.

I took him to our pediatrician who said it was time to try therapy and maybe medications.  I made an appointment and waited. And while I waited, my son got worse.  He was anxious at school; now he hid under the desk for hours.  He was sad; now he cried often and was inconsolable, sometimes saying he wanted to die.  He was going to school intermittently; now he stopped going altogether.  That first appointment couldn’t come too soon.

Like many parents, I walked into that first therapy appointment with vague but powerful hopes.  I hoped the therapist would know exactly what was going on with my son.  I hoped he would have smart and effective things for me to try.  I fervently hoped there was a path to wellness that would be short and have regular signposts so I would know I was on the right track. I hoped I could trust the therapist, trust the steps we were taking and trust the safety net I was hearing about.

There is a bargain parents enter into when they use mental health services and it’s simply this.  You give over some decision making and in return, you are expected to trust.

For the most part, we are happy to make that bargain at first.  We long for others to “get us” and define what our children need.  We long to trust that therapists, teachers and doctors have great intentions, a mountain of relevant knowledge and a strong base of experience.  We often begin with an uncritical kind of trust.

There are many kinds of trust ranging from blind trust to a “trust but verify” stance. While some of us find it easy to give our trust, many of us find it much harder. “What are we trusting?” we wonder. Expertise, good will, an attitude of “do no harm” or a commitment to our child’s mental health?   These can vary widely.  My son has had therapists, doctors and teachers who were experienced or newbies, skilled or blundering and some had a kind of humility while others were wrapped in arrogance.  I know I’m not the only parent who has been told a certain program, medication or approach is a perfect fit only later to hear that “we’ve never met a child quite like your son before.”

I read that Suzanne Massie, an American writer, met with President Ronald Reagan and taught him the Russian proverb “Doveryai, no proveryai” or “Trust, but verify.” She advised him that the Russians like to talk in proverbs so he should know a few.  He used the phrase often during important negotiations over treaties.  It’s also a phrase I wish I’d learned far earlier.

We think that the bargain we make, giving trust in exchange for help with decisions, access and healing, will be short term.  We learn that the next set of services, the next program, the next relationship asks for the same kind of trust.  Trust is defined as the belief in the reliability, truth, ability, or strength of someone or something. Sometimes that reliability or strength comes through for us.  Other times, not so much.  That makes it harder to keep trusting.

Doubt creeps in and it stays.  And it shows in our demeanor, our attitude and our body language.  I know it did in mine.

The unexpected can happen, too.  One therapist apologized to me when staff handled my son’s very rigid obsessive eating patterns with discipline, instead of understanding at his therapeutic school.  She then made changes so it didn’t happen again.  Another time a psychiatrist told me he regretted not listening to me about a medication choice.  I’d told him that we’d tried it before and it had been useless.  He insisted and had the same results.  Saying he chose wrongly made up a lot of lost ground.

It’s also awkward that therapists and other mental health professionals know so much about our lives from the trivial to the awkward to the things that make us feel vulnerable.  Yet, we often don’t know much about theirs.  When they share something, it can help our trust return.  The psychiatrist my son had in his teens (maybe the 6th one by then) had pictures of her children and dog on her desk.  I knew she was a parent and she let me know one day that her child had ADHD.  I already liked her but I could feel a part of me relax and trust a little more.

Part of parent’s job is to make decisions for their child as well as their family.  You might consult others, but in the end you decide, adjust and live with the results.  When your child has mental health problems, you are faced with a different paradigm.  Instead of consulting, you share or give over decision making.  Instead of adjusting, you rely on others to make changes.  You still live with the results.  Most of us want to believe and trust.  Sometimes we are glad we did.  But other times, it’s hard.

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Is it a support, education, leadership, networking or advocacy group?

December 26th, 2018

June came over to me and announced, “I think you should start a support group.”  I looked at her, thinking, “Me? Are you out of your mind?  I don’t have any qualifications for this.” She continued on, “You’ve been to support groups, right? And you’re a leader.  That’s all you need.”  I mumbled that I’d think about it, hoping she’d simply forget it.  She didn’t.  She was PPAL’s first director, trying to grow the organization, creating new groups throughout the state.  I looked like a pretty good prospect.

A few weeks later, I found myself in a room with 8 or 9 other parents, who all assumed I knew what I was doing.  I was excited at the turnout, feeling like an imposter but determined I’d make the time we spent worthwhile.  It turned out the group was that rare combination of valuable and enjoyable, that night and many, many nights to come.

Although we called ourselves a parent support group, it was much more.  We had only three “rules,” one around privacy (what’s said in the group, stays in the group), one around blaming (no blaming, especially not yourself) and one on ownership (the group belongs entirely to the group).  Because of rule #3, group members became very proactive.  They scolded one another when someone said their child’s behavior or illness was all their fault.  They’d point out that you can’t find solutions when you are blaming yourself, or someone else.  They’d come with resources and new ideas for people they’d met the time before. They cared about labels and words and how we spoke about our children and families.

Someone would point out regularly that the group was about more than support. It was advocacy, problem solving, education, outreach, stigma busting and trying to change the way systems treated our children and us.  “Calling it a support group,” one mom used to say, “sounds more like a pity party than what we really are.”  Whatever we called it, it continued on for years, adding new members and saying goodbye to others as their children became adults.  Since then, the rules have grown for support groups, but what parents need from them has stayed the same.

Originally, support groups were never intended to be a service.  They were a place where people learned from one another, not just the how-to’s and the go-to’s but emotional learning.  Anger was shared and so was grief and we learned that they were okay, everyone felt them push insistently into our day no matter how we pushed them back down.  Sometimes you let those feelings flood you and then you’d release them (at least a little) and other times you learn to harness them and use them to make changes or challenges barriers.

Support groups were a place where leaders were born and then nurtured.  Someone would develop expertise, hard won almost always, in special education or insurance advocacy or navigating the courts and they would teach and lead others to success.  Someone else would be a little further along in their emotional journey and learn how to change minds with their story or create change with their advocacy.  Another would know where the resources were, such as a resale shop so your child’s expenses didn’t break the bank this week or a community class where your child would be welcome.

I never thought I would be a leader but I took it on.  I shared my experiences and was nakedly honest about my failures as well as my successes. A group member would say, “I never thought I could say that in a school meeting.”  Another person would muse, “I never thought of it that way.”  Maybe the best comment of all was, “When you said that, it must have changed the meeting.” A good leader has to be vulnerable as well as strong, I found, and a perpetual learner.  There is practically no chance we can ever learn everything we need to know.

Originally support groups were created to connect with families, connect families to one another and nurture parent leaders.  To make leaders, to encourage people to go forward, they need a safe spot to come back to, to tell their story and received cheers or sympathy.  They need others to have their backs and simply care.  Sometimes they need to regroup and brainstorm for the next step.

Social media has impacted both support and support groups and created new language as well.  There are threads on Twitter, where patient advocates take cutting edge medical or psychiatric information and get it out to people who have few other ways to access it.  (Who among us subscribes to medical journals?) There are Facebook pages with varying degrees of privacy and varying levels of member screening.  You might, for instance, find the person liking your post is not another parent after all.  People with similar diagnoses or problems to solve meet online, private message, email, face time, Skype, watch YouTube videos and blog.  Their goals may range from sharing information to sharing strategies.  They may offer support or mentoring. Like everything on the internet, you can access amazing and invaluable information or support or find the quality not worth your time.

About 3-1/2 years ago, I was at a health bloggers conference and met Susannah Fox, an advocate and scholar of peer-to-peer health care and a former chief technology officer of the U.S. Department of Health and Human Services.  She writes that one in four people in America receives information or counsel from someone with a similar condition, often online. “Few of us,” she writes, “can read everything about our condition. Those who have gone before us can help sift through the mountain of information for what’s most useful.” She is a strong proponent for patient advocacy or peer-to-peer healthcare and posits that we are in the midst of an online health revolution.

If June were to come over to me today, would she ask me to start an online support group?  Or maybe a series of videos or a chat platform? I wonder if it would be the same.

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Our family’s path to recovery from trauma

October 16th, 2018

My children and I are currently in recovery after leaving a domestic violence situation back in 2010.  Both my children and I have PTSD, but we are on the path to recovery.  Both of my children also have high functioning autism, complicating treatment and their recovery.   It has been a long haul to get where we are today.  Not all of the treatment that we have received was helpful or effective.  The biggest thing that has helped us is knowing that we have friends and family that care about us.  I am sharing our story because what has helped us may help others.

When I initially left my ex-husband we were extremely isolated, and that made it difficult to leave and heal.  I am originally from the North Shore, and my ex moved us to Lowell, which isolated me.  I didn’t know anyone in the area.  Luckily, we found a program that allowed their social workers to visit me frequently.  They provided the support that I needed to push me to follow through with leaving my situation.  This experience has taught me that we truly need the support of others  There are some things that we cannot do completely alone.  Raising children is one of them.  It really does take a village.

After leaving my ex, my family immediately started therapy with a big agency in Lowell.  This agency taught me how to restrain my children, triggering them in the office to have me practice restraint.  I now know this was a completely inappropriate thing to do.  Restraint should always be a last resort.  This agency, like many in the Lowell area, has a very high turnover of staff.  They also overmedicated me.  I luckily had a friend point this out to me.  Snowing me with medication was not a good solution, and it slowed my recovery.

For me to move forward, I needed to feel the pain I was feeling and move through it.  Taking a pill for depression and anxiety is not a fix.  Sometimes medication is needed, but overmedicating patients isn’t acceptable. Patients who live with anxiety and depression and/or who are recovering from trauma need to develop skills and foster their strengths to function fully.

I am very fortunate to have a circle of friends who care deeply about us.  One of my closest friends is a social worker who pointed me in the direction of Dr. Ross Greene’s, Collaborative Problem Solving (CPS).  I changed from a traditional consequence-based way of disciplining my children to listening to them, and looking at why they behave the way they do.  With this approach, I have been able to help them develop skills.   Attachment Regulation and Competency (ARC) is a trauma informed treatment approach (similar to CPS) that is beginning to be implemented in the Lowell area.  When working with children with mental health and behavior issues it is important to focus on building their skills and self-esteem.

My family continues to work on managing emotions.  We have had to work on accepting that sometimes emotions are not fun.  The zones of regulation have been helpful for teaching my children to identify what they are feeling and assess what they can do to calm themselves down.

There have been times when I have thought I couldn’t manage the job I was given, parenting two high needs kiddos.  When one of my children was younger, they had a habit of running off, and both children had explosive outbursts.   There have been very challenging moments where my friends and community support have been all that has gotten me through.

There was a time that I thought my history of depression made a less qualified parent.   I realize now that my own trauma history and my struggle with depression make me the best qualified person to raise my children.  No one else will love them, empathize with them, or fight for them the way that I do.   I luckily was reminded that the one thing that correlates with children recovering from trauma is their having one constant person who loves them.

There are times that all we can do as parents is put one foot in front of the other, slowly pushing forward.  We need to cut ourselves some slack and accept that we are not going to be perfect.  All we can do is our best.  We can learn from our own trauma experiences and give our children the best life we can!

Christle Roberts is the mother of two children with complicated needs.  When she is not parenting, she loves to crochet, knit, cook, and teach English Speakers of Other Languages (ESOL).   She hopes that sharing her story will help other parents who are raising high needs children.  

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