Habits of highly sensitive people

February 27th, 2014

We’re going through an interesting experience with D right now in that we’re trying to find out which sports are best suited to his sensibilities. He has done soccer for the past two years, but we just pulled him out because he was freezing up in a game environment. He’s a perfectionist and very detail-oriented. This is not usual for highly sensitive children. We are not a big sports family, but we believe in staying active and fit and we’re trying to encourage D in finding the right sport for him. This great Huffington Post article talks about the habits and feelings of highly sensitive children, and an aversion to team sports is one of them.

Giving up our slot

September 26th, 2013

Tomorrow we have our last, final, FINITO session with our longtime family therapist, Dr. G. She doesn’t yet know that it’s our last session, but I do. Our son D had his last session with her back in June, but we asked if we could continue to have “parent sessions” through the start of the school year, just to make sure that there was no backsliding on D’s part during the transition to a new class and new grade.

At least, this was the excuse we told her.

In reality, I think we are having a hard time cutting the cord. This woman has been an essential part of our parenting team for three and a half years, and it’s a little scary to contemplate going forward without her. So many times when I felt utterly alone, when my worries for my child were so big that I could see nothing else beyond them, she shined a light on the path ahead of us. She helped us find our way out of the tunnel.

Now, here we are, and there’s no denying the truth: There’s been no backsliding. In fact, D is extremely happy and confident, with almost no traces of the anxiety that used to plague him. I never dreamed he would come this far. So we have to break the news to her tomorrow that this is it. We don’t need to return.

It occurs to me, however, that this may not be a huge surprise to her. Last week, she emailed me to ask if we could move our appointment from Wednesday at 11 — which has always been our time slot, for three and a half years — to a Friday. “I have a new family that I’ll be seeing every other Wednesday at this time,” she told us by way of explanation.

A new family? She has given someone else our time slot. Some other family is moving in to the space once reserved for us, and I can imagine just how they feel. Scared, defensive, hopeful, worried. They will wonder: Is this therapist the one who will help our family? And…will things ever get better?

We are living proof that things do get better. And that, in our case, this therapist was just the right person to help bring our family out of a long period of anxiety and fear. I’ll be forever grateful to her. But I’m ready to cut the cord.

Dylan Can Talk

September 14th, 2013

When my son had selective mutism, we often read a book designed for children with SM called Why Dylan Doesn’t Talk, by Carrie Bryson. This is a true story of a seven-year-old boy with selective mutism written by his mother, which follows him through his days and really gets into how he feels when people talk to him and he can’t answer back. We would read it to our son D and try to open conversations about what he was feeling when he was mute. Sometimes the talks would be eye-opening; other times D would push the book away and say, “I don’t want to hear about him!” I could see how hearing about the fear of another SM child was perhaps only doubling his own. But there were moments when the book would cause a spark of recognition and empathy for all of us — D could see that he was not alone, and I felt less alone too.

Dylan

You see, any SM parent can tell you that having a child with selective mutism means spending too much of your time convincing others — family, friends, even doctors and teachers — that this is a serious and painful condition. (Repeat: It’s not just shyness, and they don’t just grow out of it!)

Connecting with other SM parents meant that I didn’t have to do this little song and dance and explain why D didn’t respond when you talked to him, or why he seemed rude or standoffish, or why he couldn’t go to the birthday party. I found it tremendously helpful, after our diagnosis, to join the Yahoo! support group for SM parents. To my delight, I learned that Carrie Bryson was also a member, and we connected via message board a few times. As much as I had hoped that things had progressed after she published the book, I learned that Dylan was still not talking. He was known throughout his elementary school as the “boy who doesn’t talk.” This was over three years ago.

A couple weeks ago, as kids went back to school all over the country, the SM support group page lit up with messages, as it always does, from parents talking about their kids’ progress (or lack thereof). School is always a moment of big transition, especially for kids with special needs. I scrolled through the messages: “She whispered to her teacher!” “He talked to his friend on the bus!” Or, more likely, “He’s still mute. Sigh.”

Then, out of the messages emerged one with this subject line: “The day has arrived! We’ve waited over 7 years for this!” It was Carrie Bryson, telling us that Dylan, now 11 years old, decided on his first day of middle school that he was no longer going to be the “boy who doesn’t talk.” He screwed up his courage and started TALKING. My eyes filled with tears as I read this, and they are teary now, as I think about it. Carrie’s joy and relief and amazement were palpable, as she talked about all the steps forward and backwards their family had gone through to get to this point. I and many others flooded the message board with our congratulations. We all felt like we knew Dylan, after all.

We are a world of talkers. Everybody talks. Many of us talk too much. It’s as natural as breathing. But there are those children out there for whom talking isn’t natural — not only that, it’s difficult. And when those kids open their mouths to speak, after months or years of silence, it is such a gift. We need to listen to them and listen well. Dylan’s story was inspirational when he wasn’t talking, and it’s still inspirational now that he is.

Wake-up call

August 18th, 2013

There was a time, not too long ago, when I would marvel at how blasé parents were about dropping their kids off at birthday parties, school, extra-curricular activities, and the like. As the parent of a highly anxious child, however, any one of those things would put me on the precipice of a panic attack, wondering how he would do. Would he balk and refuse to go in? Would he throw himself down on the ground? Would he run, literally run, as he had so often done before? I was always armed and ready to do battle, to slay the forces of extreme social anxiety that would rear their terrifying heads in these situations. I never thought I would become that casual, laid-back mom who leaves their kid at drop-off parties or reads their Kindle while their kid plays soccer.

And yet that is exactly what I have become.

D has come so far from where he once was that I have begun taking for granted how loose and easy and brave he is in new situations. New soccer camp this week? Fine! Drop-off party at the local laser tag place? Check. His 11-year-old cousin crashing on his bedroom floor for days on end? No problem!

Social situations no longer scare or stress him. Two weeks ago, in fact, he had his 7th birthday with 15 of his closest friends, and he smiled and laughed from beginning to end. In fact, he has never looked so happy in all his life. There was a time when he would freak out at the first note of the “Happy Birthday” song — even when it was being sung to someone else.

So, where am I headed with all this? Imagine my incredible surprise when D refused to go to his friend Charlie’s birthday party this morning, a backyard splash party, because of a sudden attack of shyness. As D and I walked up to the front door of his friend’s house, D suddenly refused to take another step. His face was red and he had the unmistakable look of fear in his eyes. He wasn’t just misbehaving; he was anxious. I’ve seen it a million times.

“Come on!” I urged him. “It will be fun!” (What a lie. If you’re shy and socially anxious, parties are the opposite of fun.)

“I’m not going!” he said. “I don’t want to be here.”

I made some vague threat along the lines of, if you don’t march up here with me right now you’ll regret it forever. He marched. We made it in the door, and then he stood stock-still in the dining room and refused to go any further. “I’m not changing into my bathing suit,” he said. “I’m not going out there.”

I left him in the dining room and said my hellos to Charlie’s parents. I went back to D to see if I could encourage him to move. No luck. After more cajoling, I got him into the bathroom so he could change into his swim trunks. I exited the bathroom and made more small talk with other adults for five full minutes. When I went to check on him, to my chagrin, D hadn’t changed. In fact, he hadn’t even moved. “I’m not leaving the bathroom,” he said.

I told him that he couldn’t hide in the bathroom all day. He folded his arms and dug in his heels. I had a terrible flashback to another time D had a similar anxiety attack on his first day of tae kwon do, which kept us trapped in a bathroom for a long, long time. In the present, I finally got him to leave the bathroom and told him to at least go out and say “hi” to the birthday child. He refused to do it. In fact, he flipped out and balked and kicked like a bronco. I made hasty apologies and we fled.

I screamed at him the whole way home.

I realize, of course, that that’s not an ideal reaction. While D ran sobbing to his bedroom, I cried in the living room, recounting for Eric all that had happened and how these kinds of situations send me on a stomach-lurching time warp back to our darkest days of selective mutism and social anxiety. It may sound hyperbolic, but there were so many times during those dark days that we felt like we were at war with an unseen enemy (anxiety) that tried to keep our son down at every turn, who threatened his joy — his very participation — in all that life had to offer.

Unfortunately, it’s all too easy in these moments to transfer the anger from the unseen enemy to the thing I can see — my child. And that’s what happened today. I screamed at D and told him how disappointed and embarrassed I was by him and for him.

Eventually I calmed down and Eric and I sat D down between us. I apologized for my horrid behavior and tried to explain why I was so upset. We reminded D of all the reasons why we misbehave — a list we’ve gone back to countless times over the years* — and we conjectured that he might be overtired, worried, and embarrassed. He agreed. Eventually, we got him calm enough to agree to go back to the birthday party, an incredibly brave act given the way we had left it. In fact, as I write this, they are still there.

But this episode threw me for a loop. It was a stark reminder that, despite D’s progress, I still need to be sensitive to his emotional needs. He’s been running tired all week, and edgier than usual, and he may have been a volcano waiting to erupt. School is starting in just a couple weeks, and that always stresses him out too.

You can bet that I’ll be spending the next few days and weeks figuring out how to build D’s confidence, help him rest, and calm his nerves. Anxiety is an enemy that sneaks up on you, whispers in your ear, and takes you by the throat. But I’ve beaten it before, and I’ll do it again. So will D.

* The 12 Reasons Why We Misbehave

(We developed this list over time, beginning when D was three years old, to help him to identify his feelings and figure out the root causes of his actions when things aren’t going well. D has it completely memorized, in order, and it’s really helped us to get past the acting-out stage and into the recovery and problem-solving stage. We find it helpful for us grownups too.)

1. We’re hungry.
2. We’re tired.
3. We’re thirsty.
4. We’re mad.
5. We’re sad.
6. We’re worried.
7. We’re scared.
8. We’re bored.
9. We’re embarrassed.
10. We’re constipated (funny, but true in our case).
11. We’re around too many people.
12. We’re jealous.

New chapters

May 23rd, 2013

In writing this blog for the past three years, I won’t deny that I have thought from time to time that I should write a book about D, social anxiety, and selective mutism. A couple things always held me back from pursuing this, however. First, while we were living with the mutism and struggling to help D conquer it, there was no ending, and every book needs an ending. Now, with D so happy and confident, and our therapy ending on June 19th, we have our happy ending. We’ve learned so many things about ourselves and our child, and I think those lessons are worth sharing.

The other thing holding me back, however, is D’s privacy. He has told me before in no uncertain terms that he doesn’t want me to write about him or his selective mutism. He doesn’t know about this blog and so that alone feels like a gigantic betrayal. I’ve always struggled with the question — is this my story to tell or is it his? So I’ve waited and watched to see if D would ever come around. Recently, I posed the question to him again: How would you feel if I wrote a book about you and your selective mutism? His answer surprised and impressed me. “Okay,” he said, “but only if you change my name.” That I can do. I gave him a hug and told him I was proud of him, as I am every day.

Who knows what, if anything, will come from this new venture? The thought of possibly telling our story in a new public format both exhilarates and terrifies me. As with all things that give us anxiety, it would be so much easier just to not do the thing that scares us. But that’s not what life is all about. It’s not what OUR LIVES are all about. We don’t give in to anxiety, we don’t avoid things we’re scared of. We face them and get past them, and D would be the first person to tell you that.

Graduating

April 23rd, 2013

In February 2010, we started seeing a wonderful child psychologist, Dr. G, because Declan had stopped speaking and had severe social anxiety. We have now made the joint decision with her on when his last session will be, because it is clear that he is absolutely thriving. Every time I think about that upcoming last session, I am torn up. I know it’s time to say goodbye, but it’s also so hard.

You have kids thinking you’re their only parents and then you realize you’re actually just part of a big team bringing them to adulthood. How will I ever thank her?

Another Memorial

April 16th, 2013

It’s April 16th, the one day every year that I mourn a monster. Correction: I don’t mourn the monster he became, but the child he once was.

Six years ago today, on a beautiful blue-sky day when my son was still a babe in arms and innocent of this world, Seung-Hui Cho opened fire on his Virginia Tech classmates, killing 32 people and injuring 17 others before turning the gun on himself. Despite the horrors visited upon us before and since, and as recently as yesterday — when terrorist bombs exploded at the Boston Marathon, killing three — the Virginia Tech massacre remains the worst mass shooting by a single perpetrator in American history. Seung-Hui Cho, as I’ve written before, suffered from depression, schizophrenia, and selective mutism. To me, he is the horror-movie poster child for what can happen, at the ultimate extreme, when severe social anxiety is ignored and dismissed.

When I’ve written about Cho in the past, people have criticized me for associating selectively mute children with a cold-blooded killer. My response is always the same. I didn’t connect the two things; Cho did that when he pulled the trigger. I think it is dangerous to ignore the fact that Cho’s selective mutism, and people’s responses to it, helped swing the pendulum away from healing and toward madness. How I wish that were not the case.

Six years later, my son is now in elementary school, still largely innocent of this world. But cracks are beginning to appear in the armor. He unexpectedly walked into the room last night as I was watching the news, which was filled with images of the bloody streets of Boston, where the bombs claimed the life of an 8-year-old boy, not much older than my son, and two others.

“What’s that?” my son asked, pointing toward the smoke and chaos on the screen.

“Nothing,” I lied, quickly turning off the television.

“What was it? Tell me!”

“No,” I said firmly. “It’s time for bed.”

He turned and complied, but I know he knows that I’m keeping something from him. He’s old enough to understand that bad things happen in the world. He just doesn’t need to know how bad. Not yet. I wish not ever.

The older I get, and with children of my own, the harder it is to hear about another lost child. “He could be mine,” you think, and it hurts in a deep place. I thought that when Newtown happened. I thought that when I heard about the boy in Boston, innocent of this world, watching a marathon on a beautiful blue-sky day. And I thought that about Cho, when my son was first diagnosed with selective mutism.

“He could be mine.”

And you hold your own child tight, encircling his still-small wrist with your fingers, cradling that innocence like you once cradled him, for just one moment longer.

Guest Post on Psychology Today (and A Research Opportunity)

February 11th, 2013

I am so honored and pleased to have coauthored a piece on selective mutism with Marian Moldan, a licensed clinical social worker and an expert on SM, that was published today on a Psychology Today blog. The post deals with raising awareness about SM in the wake of the Newtown massacre and the possibility that the killer, Adam Lanza, suffered from this affliction.

Dr. Amy Przeworski’s fantastic “Don’t Worry, Mom” blog focuses on anxiety in families, and she generously gave us space on her blog to explore the signs and symptoms of this rare and often misunderstand condition. I am forever grateful to Marian and Amy for their wisdom and generosity!

ATTENTION SM PARENTS: Dr. Przeworski is heading up an online research study about kids with selective mutism, social anxiety, separation anxiety, OCD and other anxieties. If your child suffers from any of these anxiety-related conditions and you’d like to participate in this very worthwhile research and fill out some online questionnaires, please visit this site for more information.

No Fear

January 22nd, 2013

One by one, D is slaying all his old demons. Last week, he had his first-ever swimming lesson. There was a time, not too long ago, when it was all I could do to get D to sit on the step at the shallow edge of a pool with his legs in the water. It wasn’t unusual for us to join friends at a pool and have D’s head and torso remain bone dry the whole time. Putting his head underwater was verboten. He really preferred to hang out in the baby pool with his sister.

But I have been preparing him for the better part of a year that we would do swimming lessons after the holidays. He’s 6 1/2, and it’s time. I told him that, like soccer and tae kwon do and reading, the more he practiced at this, the better he would become. I arranged for a very expensive but very private lesson with a local swimming instructor, knowing that it would be easier for D if no other kids (or adults) were around. I emailed her ahead of time and told her all about D’s history of social anxiety and mutism, to prepare her if he balked or stayed mute. She assured me that they would go as slowly as they needed to.

Imagine my delight on the day of the lesson when D happily said “hello” to his instructor and hopped right into the pool. In one half-hour lesson, he did more than I expected him to do in several lessons. He put his head underwater without holding his nose, he paddled and kicked the entire length of the pool using a board, he blew bubbles underwater, and he floated on his back. At one point, the instructor looked over at me and mouthed the words, “NO FEAR.”

Damn straight. No fear.

In that moment, I felt a pang of sadness and regret over my own childhood, which was riddled with fear and anxiety, and wished my father had had the wherewithal to push me out of the nest the way we’ve been doing with D for the past three years. D has come so far, much farther than I had by his age–or even twice or three times his age. I was so enormously proud of him. Again.

But does that mean the old feelings are completely gone? Not at all. On Monday, he had a dentist appointment, another place he’s had anxiety in the past. Unfortunately, he did not speak, even when spoken to, for the first half-hour we were there. Think about that: Thirty long minutes of silence, even when he was spoken to. Whenever that happens, I feel the gaping black hole in my stomach, the one that’s been stitched closed with only the thinnest of threads, threaten to re-open. As I wrote three years ago, way, way, way back on that earliest, saddest day, when your child doesn’t talk–when they can’t talk–it’s a sad, scary feeling. But I know now to trust in the progress we’ve made. And sure enough, Declan eventually started talking to his hygienist and to the dentist.

The arc of progress is long but positive. We have another swimming lesson tonight.

Peace at Last

November 5th, 2012

A few weeks ago, I volunteered to be the “mystery reader” in D’s kindergarten class. Parents do this all school year long, showing up unannounced, and unbeknownst to their child, to read one or two stories to the class. I wasn’t sure how D would react to my presence in the classroom. On one hand, I could see him being excited about it, but I could also see him being embarrassed. D is mercurial, among the many other descriptors I could apply to him. I just hoped for the best.

On my appointed day, I was surprised to arrive to a darkened classroom peopled only by D’s teacher, Mr. McC. Registering my questioning look, Mr. McC said that the kids were all outside at recess but would be returning soon. “When I hear them approaching the class, you can hide in the supply closet and burst out,” he said. Oh boy, I thought. Surprising them was one thing; scaring them, and particularly my sensitive child, by jumping out of a closet was another thing entirely.

Within moments, the kids returned and I ducked into the closet, surrounded by several shelves of Elmer’s glue, construction paper, and small, blunt-edged scissors. I heard Mr. McC tell them to sit on the rug because the mystery reader was coming. From inside the closet, I could hear D’s beautiful voice, chirping in suspense along with his friends. “Who is it?” “It’s my mom!” “No, it’s my mom!”

Finally, on Mr. McC’s cue, I burst out of the closet to a chorus of giggles. I was especially happy to note that D looked positively delighted.

To help counteract any weird feelings on D’s part, I had deliberately chosen to read one of his all-time favorite books: Peace at Last, by Jill Murphy. This is a lovely little book about a father bear who gets the worst night of sleep imaginable. His wife is snoring, his baby boy is pretending to be an airplane, the leaky faucet is dripping. He even tries to sleep in the car, until the sun “peeps in at the window.” On each page, and in the face of each obstacle, Mr. Bear exclaims, “Oh NO! I can’t stand this!”

I asked the class to say it with me each time. “Oh NO!” their little voices roared, getting more lively with repetition. “I can’t stand this!” It was great fun.

After I finished, Mr. McC gave me another book to read about pumpkins, reflecting the season. Then I took questions from the class — about the books, about pumpkins, even about what I was wearing for Halloween — and I was so heartened to see that D was participating just as much as the next child, raising his hand, talking, questioning, laughing.

You see, friends, even though D has been talking for a long time, I don’t think the raw fear of his selectively mute days will ever truly leave me. I’m amazed over and over again at how far he’s come, long after the rest of the world has taken him and his normalcy for granted.

And oh, how far he has come. Overall, D’s had a terrific start to kindergarten, so much so that I can’t quite believe it. When I put him on the bus that first day of school, I felt like every moment of his life, large and small — from his birth to his tiny first diapers, from spitting up and sitting up to preschool and therapy, from playdates to tae kwon do and soccer — had led up to that moment. He was going to school, and he wasn’t mute, and he wasn’t scared. Moreover, he had friends and activities and a desire to be there. In a word, blooming! So much blooming.

But it hasn’t been without struggle. After a high-flying start, D has still faced some acute social-anxiety challenges in the classroom that we’re still working through and that have been highly frustrating at times, for us and for him. Oh NO! I can’t stand this!

Yet, even these lingering challenges are getting slowly better, as all our other challenges have too.

In the book, Mr. Bear finally goes back in the house after his fitful, frustrating night. Mrs. Bear has rolled over and stopped snoring, and Baby Bear has finally fallen asleep. Mr. Bear gets under the covers. “Peace at last,” he yawns to himself, as he closes his eyes.

Then the alarm clock goes off — BRRRRRRRRINNNNGGGGGGG!!! — and it’s time to face another day, with all its demands.

Peace at last. It may only be fleeting, but I’ll take it.