Thursday, May 14, 2015

Words matter

As a mother, you feel a sense of loss when your child has developmental delays. You lose out on the normalcy of a typical childhood. You feel lost because your kid doesn’t fall into the normal developmental timeline. You don’t know when or if your child will reach his milestones. You feel like you are working harder than most parents with normal kids in a developmental tug-of-war.  You aren’t just guiding them over their hurdles, you are dragging them, kicking and screaming.  Not only is it hard on you, it is also hard on them because they know they are different. There are daily reminders of how you and your family are different from everyone else. There is a nagging sense of loss, no matter how you spin it. 

What I recently realized is that my daughter has felt this loss too. She has shared in the same loss and pain I have felt because we know that Ben is different and sometimes, very, very difficult. Emily is a typically developing (and sometimes precocious) kindergartener who loves her little 3-year-old brother. 

But she knows he isn’t like most kids. 

There must be a disconnect in her brain saying, “Ben is nearly my size, but he can’t talk like me. What is wrong here?” I have caught her musing about what Ben’s voice will sound like and what he will say to her someday. Sometimes she asks me for a normal sibling that she can talk to. (Ouch.) She will ask him if he can say X, Y, or Z and is usually met with a blank stare, like he didn’t hear her.  But he DID hear her and he DID understand. He has difficulty speaking because of his verbal apraxia. Ben desperately wants to talk, and he understands most of what is said around him, but he has trouble getting the words out due to this stubborn speech disorder.

Ben is 3.5 years old and still can’t say his own name. He calls himself “Bee.” He only recently started saying the word “me.” I wondered if maybe he could call his sister “Mimi” as a starting point. We have been working on getting this word out of him for a few months. Just this month he has been spontaneously and accurately referring to her as Mimi. 

You would not believe how glorious this one word is!

When he first started calling her Mimi, she would whip her head around to see if anyone else witnessed this remarkable voice coming from her brother’s mouth. “MOM! BEN SAID MIMI!!” She often turns to him and says, “Awwwwww, you said my name.” She has been waiting so long for affirmation of her brother’s desire to play with her and be with her and, simply, to just say her name.  She has been patiently waiting over three years and it is amazing how important just saying a name can be. Seeing her pure delight in a simple word made me realize that she has felt loss, too. If I didn’t realize it before, I realize it now: words matter.

Words really matter. You might not understand this until you witness how hard it is for some kids to develop their words. I have witnessed countless speech therapy sessions where I see the painful struggle on Ben’s face as he tries to form a word, groping for the right sound. I have had to fight back tears when I watch him concentrate SO hard, scanning his memory for the right motor plan to say “up” or “out” or “yes,” but all he can get out is “hum.”  Each day is a battle to push him beyond his comfort level and get some words out, but not to push so hard as to cause frustration or low self-esteem. Without the push, it just won’t get done. Apraxia doesn’t just resolve on its own. It is time-intensive, slow and agonizing. 

Despite the loss our family feels on behalf of this apraxia problem, we have taken some good things from it. Like I said before, words really matter. It is a reminder to use kind words and to be supportive and uplifting to others, especially to children. I feel a loss, yes, that my child is different. But I also recognize what a wonderfully bright kid Ben is and see how he has the strength to overcome many adversities in life. He has tenacity because even though he throws tantrums in speech therapy, he doesn’t quit.  In addition, my daughter has grown into such a caring and compassionate person.  She stands up for her brother when her friends ignore him or make fun of him. She always chooses him, despite all her frustrated moments with him. And now that he can say her name, well, I am thinking this will be a strong partnership for life.

May 14 is Apraxia Awareness Day-check out

Tuesday, April 21, 2015

Time goes by

Time goes by so fast. Enjoy it while it lasts!"

My heart hurts a little whenever I hear these words because I feel differently. As a parent, time moves so slowly to me. I must be the only person on the planet who feels this way, based on the number of times I have heard the above-mentioned platitude.

Why does time move so slowly? Because my 3-year-old son has developmental delays. 

Everyday I wait and worry.

I wait to see the next milestone. 

And I worry that he’s not there yet.

Ben's first hurdles were medical. He had surgeries and hospitalizations, countless doctors appointments, out-of-state consultations, medications, special formula. As these issues leveled out, we started observing more developmental concerns and had our state's early intervention program help us. Ben has come a long way with public and private therapy programs. He persists with sensory processing problems and speech and motor delays.

Ben's most pressing issue now is called "childhood apraxia of speech," or apraxia. 

It is like having a 1-year-old trapped in a (big) 3-year-old's body. 

He can't get his words out, despite knowing much of what is said to and around him. He has a neurological speech disorder. There is a disconnect in signals between the brain and the motor movements of the mouth. Ben is not stubborn or lazy or "just a boy" or "letting his sister talk for him," like many people like to advise me. This is not something just outgrown with time.

Apraxia is a conundrum. First of all, it is a diagnosis that a lot of speech therapists and doctors cannot easily diagnose because it does not have a universally accepted definition. Secondly, we don't know what causes apraxia. Finally, and most disappointingly, there is no standard, successful therapy for it.

If you aren't a speech therapist, you probably haven't heard of apraxia. I certainly hadn't, despite my medical training. It has been an interesting, grueling, maddening road at times. For the past 2 years, Ben has only gained a few new words each year. I think you can see why time has been extremely slow here. 

We made a difficult choice recently to start over with a new speech therapist and to increase therapy to 3 days per week. These sessions are often very hard for Ben and result in screaming and tears. He uses picture communication cards and a dedicated speech Ipad. We also have Ben enrolled in the school district's special education program, where he gets speech therapy as well as physical and occupational therapies. 

Living with apraxia is very difficult and a constant battle for me to keep pushing Ben beyond his comfort level in order to get progress. But not pushing TOO hard so as to create frustration and low self esteem. Life is obviously difficult for Ben, who just wants to communicate and play like every other kid. Having an apraxic brother is hard on big sis, who just wants to play with a normal kid. I am Ben's interpreter and the kids' referee. I am the 'mender of fences' and keep things as peaceful as possible. It is exhausting on a whole new level-even more so than residency call nights and ER night shifts! Probably because it is an unrelenting stress, with no days off.

I hope to be able to report more progress in the upcoming months...we are already starting to see some improving verbal skills as a result of our new therapist and ongoing commitment to his development. But I wanted to share about apraxia and spread the words about speech and language delays!

Big boy with his daddy

Sunday, March 22, 2015

About that picture....

This photo has been moving around the internet quickly. Apparently it is an emergency room doctor in Southern California, taking a moment to grieve after losing a young patient. The public has really taken an interest in this, highlighting the difficult job of emergency room doctors, EMTs and nurses who deal with this kind of heartbreak everyday. (Maybe every other day. Maybe a few times per month. Just depends.)

A picture says a thousand words...and this one says it all.

I know what this doctor is feeling here because I have been there too. I remember those tearful moments in bathrooms, call rooms, empty ambulance bays, and at home. You don't get the time or luxury to properly grieve and talk about your feelings. Nobody talks about this. It is just assumed with the job. 

You don't have the time to deal with it because you must return to a busy ER, filled to capacity with needy patients, and a large staff you must lead until the end of your shift. 

You don't have the luxury to grieve because usually your thoughts after a death are, "I have so much paperwork to do." "I have to tell the family." "Did I make a mistake?" "Did I document my actions and reasoning well enough so I don't get sued?" 

And so over time, you have to find coping mechanisms to get you from day-to-day. There is a desensitization that occurs when you see horrific things, over and over and over again. You become cynical and flippant. You throw your empathy overboard because it is extra weight on a sinking ship that must keep floating until the end of your shift....and until the end of your career. Death becomes commonplace.

Are doctors provided any kind of tools to deal with death? Courses, seminars or counseling? Not really. It is an on the job adaptation. I've seen a lot of after hour adaptations as well. Alcohol, substance abuse, risky behavior, etc. I've read about the rates of physician suicide in the US (400 physicians per year) and realize that our coping mechanisms just aren't good enough. 

I am glad this doctor took a time-out. I re-posted the picture because the subject is anonymous and it is done at a respectful distance. I hope it gives people some perspective about what ER staff have to deal with. I also hope doctors see it and remember that grieving is normal and necessary.  

Tuesday, February 17, 2015

SOMEDAY I'll be happy...

People ask me why I quit medicine. The short answer is, "I wasn't happy." Here is the longer answer:

No one is "happy" during residency. It is the most challenging (and perhaps demoralizing) time during a physician's training. The hours are long and the work is intense. You know it will be difficult but you also know that it will be over in a few years. I told myself I would happy after residency and would just have to stick with it. But a nagging voice in my head told me it wasn't just a tough residency that made me unhappy. Perhaps I chose the wrong program or wrong specialty. Maybe I should have taken time off. I still am not sure where exactly things went wrong.

I often think about the characteristics that help physicians get through so much school, through residency, and beyond. One of the key characteristics physicians have is the ability to delay gratification. We put so much time into our education because we know (think) it will be worth it in the end. We delay marriage, kids, and life in general so we can get through it. We also delay happiness, which can be very harmful and establish maladaptive living patterns.

And if we are so good at delaying happiness, will it actually ever set-in and happen? Or do we get so good at putting it off, that it remains elusive?

I saw my chance at happiness crumbling as I tearfully handed over my new baby to grandma so I could work a week of night shifts. I saw it crumbling when I missed out on those early milestones. I saw it crumbling as I heard those tears of protest as I left the door for work again...and again. It's the saga that many working moms understand. But it affected me deeply. I was supposed to be happy with this bundle of joy (that I desperately wanted) but I felt like I was even farther from my happiness goal. The puzzle pieces just weren't fitting. Even after residency was over, I knew I was out of place but wasn't sure where I was supposed to be.

When you get used to putting off your happiness, and delaying gratification, I think it sets up a neural network that is HARD to reverse. By the age of 30, I was used to putting in a lot of work in the present in order to get payouts later. I didn't live in the moment.  In fact, living in the moment is still a very difficult concept for my brain. I kept thinking that "someday" we would be happy. "Someday" we would go on vacations. "Someday" I could write. "Someday" I would take care of myself. "Someday" I would enjoy my kids. "Someday" I would have less stress.

But when you keep postponing until someday, it might never happen. I was so glad I had my daughter when I did and realized I needed to move in a new direction. It took a few years after residency, but I was fed up with thinking and planning for someday and never enjoying the journey. I was tired of asking, "how many miserable years do I have to put in to get some good years out?" Quitting clinical medicine was my eventual answer, made very clear after having a second child whose medical and special needs continue to overwhelm me. My career remains on the back-burner and I want to find a way to use my medical knowledge to help people. But my family needs me now, and I need them.

Me and baby E