Tag Archives: parenting

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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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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Don’t call me an enabler. Or anything like it.

August 24th, 2018

Let’s talk about enabling.  Or rather, let’s talk about being accused of it. Happens quite often to parents like me.

The first time I ever heard the word “enabler,” and later its sister words co-dependent and over-controlling, was early in my son’s mental health journey.  He was doing progressively worse each day, exploding over minor things, threatening to hurt himself daily and I went looking for support and help.  I made a long series of calls and finally got what I thought was a sympathetic and wise person on the phone.  She listened, asked a few questions, then pronounced that I was an enabler.

My son was 7 years and, as it turns out, about to have his first psychiatric hospitalization. What I needed was help, not a label.

It also turns out that she knew diddly squat.  It took me a while to figure that out.  I took that word out and turned it over and over and even shook it a few times to see if it would change into something else. It didn’t.  It stuck in my mind, adding to my doubt in those dark moments when I wondered if I could parent my son with his enormous needs.  It undermined my pleasure when I found a moment, all too rare, when I sat with my son and we both enjoyed the moment, the hour or the afternoon.

About a year later, I found a group of parents who all had children like mine.  Some had teenagers (and their stories scared me), some had girls, some were strict and some weren’t.  At a meeting, I told my story of the phone calls and being called an enabler.  They laughed, they scoffed and they said it had happened to them as well. I felt a weight lift and some of the guilt leave.  I wasn’t ready to laugh along with them though.  The woman on the phone had been so certain.

What I had started to do from the very beginning was use a mashup of techniques that actually work for those of us trying to parent a really challenging child.  I was letting behaviors go that weren’t absolutely necessary to deal with right then and there. I was trying in a thousand ways to accept and support a son who the world was rejecting when they saw him in his bad moments.  I was adjusting to our new normal. The lady on the phone asked me what I did when my son had meltdowns and I told her I was letting the unimportant go and accepting my son no matter how he behaved.

When you parent a child with mental health needs, you are very focused on finding what works for your child.  You can’t afford a lot of trial and error and it may look controlling when you say no to things you’ve tried before or you just know are unlikely to work.  You also learn how to manage the details.  My son would have a meltdown if we walked through a store with images of zombies or monsters on t-shirts, DVD covers or books so we got good at avoiding those sections.  Sometimes his younger brother would walk 10 steps ahead and turn over the images so we could only see the backs of those items.  Yep, you bet we controlled the environment and even where he walked sometimes.  We made it easier on him, but also on us.

Enabling is described as excusing, justifying, ignoring and smoothing things over for a person who is addicted, has a mental illness, has out of control gambling and so on.  The enabler thinks things like, “If only I can keep this person going through their current crisis, it will buy us another day.” If I had been asked if that definition or self-talk fit, I would have raised my hand in a heartbeat.

When I stopped talking (much) about the details of my son’s life to people who didn’t know us, or had little expertise in children’s mental health, I stopped hearing words like enabler. The therapists, psychiatrists and special education teachers who had experience with mental health issues in children simply got it.  They were using the same techniques I was and comparing notes with me.  My hard won knowledge and experience in what works were seen as just that – expertise.

I’m pretty sure, however, if I looked at the notes from the early IEP meetings or therapy visits, I’d see a word like enabler in there somewhere.  And that’s the problem.  Those words get put in the notes and the next person sees them and maybe wonders or believes it to be true. One casual observation from someone who has a little knowledge and more judgy-ness can have an outsized impact.  So, please don’t call me an enabler.  You’ve got that wrong.

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Five things that parents need you to say

July 16th, 2018

There are memory moments you take out, hold up to the light and bask in for a minute or two.  They give you a little spark of brightness, a lift or bump of energy.  Those are moments you hoard and take out sparingly because you know you’ll need them again.  You don’t want them to lose their impact.

When my son was nine, I had such a moment.  It was a particularly tough time when nothing was going right.  He was diagnosed with depression but the succession of medications made him wired, rarely sleeping, acting on nearly every impulse that crossed his mind.  I was taught behavioral strategies which were pretty worthless and the word “no” reliably caused meltdowns or worse behavior. I was tired, discouraged, often near tears and holding on with a grit-my-teeth determination.

During an appointment with his psychiatrist, my son flipped through every mood, touched everything in the office and was headed for a major outburst.  I don’t remember what I did – talking, rubbing his shoulder, bribing or distracting but it worked for a few minutes.  The doctor looked at him, then at me.  He said, “You two are a very good fit.  Your son is lucky to have you.”

I replayed those words over and over again that day and would take that moment and those words out and relive them over the years.  I never doubted them and felt more confident.  They always lessened my discouragement (at least a little) and became a kind of touchstone.  Every parent raising a child with emotional, behavioral and mental health needs simply should have one of those moments.  Two or three, or even more would be even better.

Many appointments are focused only the child or youth and have little time for conversation, except for giving directions for follow up.  Sometimes parents call, email, facebook or contact someone for help and the entire exchange is focused on problem solving.  We are all thinking about the needs of the child, not the parent.  We give lip service to the notion that a parent is the most important part of a child’s life, but that’s about all.

Parents raising children and youth with mental health needs have learned to take a smidge of encouragement and run with it.  It’s usually in short supply.  Whenever there is a chance, it’s important for all of us to hear these five things.

1.  Your child is lucky to have you. Parents hang in there and do the best they can. We are blamed, judged and excluded regularly and many times don’t feel lucky at all.  Our efforts go unnoticed though we are the ones dealing with the aftermath of the latest meltdown or shopping for a rigid eater or anticipating the next crisis.  Without our advocacy for services and school supports or our willingness to live one day or one hour at a time, things would be a lot worse.  It’s really nice when someone notices that.

2. It’s not you, it’s the system. Our children don’t get approved for services or we have no idea what’s available.  A program or treatment is stopped too soon or we wait for it forever.  We do our damnedest to parent well, to keep our child on an even keel and then the system simply doesn’t work the way we are told it’s supposed to.  It feels personal.  It’s nice to hear it’s not.

3. I like the way you said that. Parents often have a unique way of looking at things and they coin their own phrases or create funny names for things.  My son and I made up names for our pointer dog and she was the stand in for a lot of family jokes.  Parents shouldn’t need to learn jargon or acronyms (though most of us do) and we often use words that make things sound less intimidating.  Instead of talking around us or “above” us, appreciating our point of view is worth a lot.

4. You’re doing everything right, even if you’re not seeing the results. Thomas Edison, they say, failed 1,000 times before creating a successful light bulb. All the diets, discipline and many treatments we try often don’t work.  We take the blame on ourselves too often or wish we were better at this. We are often doing it right but the results don’t point that way.  It’s nice to hear it said out loud once in a while.

5. You’re doing a good job. It’s a tough job, raising a child with emotional or behavioral issues. People are quick to judge (why can’t you control him?) or offer platitudes (it’s only a phase).  There is still a lot of stigma out there around mental health issues and many parents feel it’s not getting any better.  Even professionals who say they are strengths based in their approach only offer suggestions or new things to try without taking the time to notice our good work and herculean effort here and now.

Parents are great at detecting what’s authentic and what’s not.  One of the reasons it meant so much when my son’s psychiatrist said he was lucky was because he truly meant it.  If you say one (or more) of the five things, you’d better really believe it .  On the other hand, if you truly mean it, it might be one of those moments a parent like me takes out when the going gets tough to cherish and make their day a better one.

 

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