Q: Our first child, Allison was born at 38 weeks and died within days. We have 3 children now, 9, 6 and 4 years old and have never discussed their sister Allison with them. I feel torn as to tell them about their sister or to shield them from such a sad experience. Even after 10 years our loss is still difficult to talk about without crying. Thank you for any thoughts you can offer.
Conshohocken, PA

dear Brigitte,

I am so sorry for your loss and how painful that ache in your heart must be.    

First, bear in mind that your grief has probably already been felt by your children as they are quite skilled at sentencing the emotions of their parents.  But this is not necessarily a problem as children are rarely upset by their parents’ sadness or even tears.  What has the potential to harm children is when parents swallow their feelings and they come out sideways like over protectiveness toward creating a terribly busy life to avoid the sadness.  So with that as the background.

 Begin any discussion about death with children by asking questions about your child's understanding of what it means to them.  Almost all young children have some experience with death even if it is only seeing a  dead bird or hearing about a friend's grandparents.  If you ask them if they have any questions of you, you will get a sense of how ready they might be. Now you can give them the information they are ready for.

Of course, what information you give them depends on their age and your own emotions and beliefs.  I doubt that you would do this, but you don't want to overload children with your emotions.  So it's okay to show sadness and even talk about it.  But it's not okay to ask children to behave in a certain way so that you can feel better.  That gives them too much power and too much burden.

Whenever you have this discussion, answer all of their questions honestly. And, in keeping with being honest, please don't pretend to have all the answers.  Keep your answers brief and simple.  And most of all, don't let your own anxiety interfere with your ability to listen to their questions and their emotions.

Today's chat will be about living life while facing death and finding meaning in the process.  Today's guest will be psychologist James Coane who specializes in trauma and has a special interest in existential aspects of personality.

Sometime around age 6 or seven, most children realize something about death.  Often it's the death of a grandparent or a family pet.  But pretty soon children figure out that their parents could die.  And then there is a flash of realization that they could die. 

This death anxiety usually goes underground because it is just too much for us to deal with.  And it stays underground for a long time.  But it is always there and often revisits as we age more when we become ill.  Such is the case with Ken.

On Tuesday's blog, we will be speaking about living life while facing death and finding meaning in the process.  My guest will be psychologist James Coane who specializes in trauma and as special interest in existential aspects of personality.   

Dr. Dan:  I just turned 50.  I developed a case of health anxiety (which I guess is ultimately death anxiety) after a pulmonary embolism episode two years ago.  At one point, they thought a tumor might have caused the clot.  Thus, I had to endure the mental anguish of several tests and body scans, etc.  Fortunately, I came out of that episode fine physically but a month or two later I started getting severe health anxiety and cancer phobia.  I've seen two therapists, one who pushed "thought records" on me so I'd think more rationally.  Intellectually, it helped but emotionally I was still messed up.  The next therapist said I needed to "expose" myself to my worst-case scenario (terminal cancer, wasting away, leaving my young children and wife, and an early death).  This made me cry several times and I eventually "habituated" to it but the fear remains. 

\I believe my challenge is dealing with my ego and living by my Soul.  

 I believed this even before the clot episode.  Now it's even more important in my mind.  You talk about managing the ego and opening your heart and living from that space. I would greatly appreciate any recommendations you might give me regarding how to address my ego/fear issue. 

 Dear Ken,

Yes, the anxiety you describe is called existential anxiety and it is both ego-based and universal.  You see, the ego cannot tolerate the idea of no longer existing, so it drives us to form this big identity, leave our mark or "be all that we can be". The ego's demands are relentless, and in a way, inevitable.  "You have to be somebody before you can be nobody" is a well-known Buddhist saying.  It's really saying that we have to see how big and how strong we can get before we can let go of all of those ego-based acquisitions.  But that's easier said than done. Because we might age, but that ego doesn't necessarily make sure along with us so that the demands continue.  "After all" the ego might say "I cannot imagine this world without me in it." 

 Cultural anthropologist Ernest Becker wrote a seminal work in 1973 called "The Denial of Death". In it, he suggested that all of our social structures are about protecting us from death anxiety.  Certainly all organized religions address that anxiety by promising us some form of afterlife or rebirth.  So we struggle to make sure we are important, leave a mark, or make sure people are dependent on us.  I recently accepted a lecture invitation for a year from now and jokingly said to someone that I have this obligation so I cannot die before that!  Of course, I was playing with my ego because the ego wants us all to think we are important.  I have good news and bad news.  We are not, so we can stop fighting that battle.! So what now? 

I have been thinking about these things for the last 30 years since I've become a quadriplegic.  And in those 30 years, I have faced death many times.  And as I age, I feel it getting closer.  That's beyond knowing that it's getting closer, I feel it.  And because of that, I can answer the question "so what now?"  Live.  The facts of your life can not change.  You are older and more fragile than you want to be, and death moves closer.  So between now and then, your job is to live your life as fully as possible, mourn what you have lost, love what you have and who you have and consolidate the wisdom you have accumulated over your years.  Then teach your progeny is what you've learned in life and how you've learned it.  That could be your way of saying thank you for this wonderful journey.  Remember, you fear death because your life is precious to you, but when your mind races to the future you miss out on your life.  So when you feel anxiety, just let yourself feel it until the next emotion crops up in a few seconds.  But also notice the temperature in the room moment by moment, noticed your breath and the way your body feels.  Notice the color of the sky and when you get quiet, simply notice how sadness and joy and fear and love all dance around inside of you moment by moment and none of them last very long.I wish you peace

Critical self judgment is an issue I am sure we can all relate to.

This web chat will be about dealing with our harsh internal judge. 

My guest for this chat will be Dr. Michael Baime, head of the Penn Program for Stress Management.

Since this is autism awareness month, many of us in the media have done many stories about autism. As a matter of fact, my show tomorrow (WHYY FM 12 p.m.) will be covering research and policy around autism treatment. But nothing captures the experience of being a parent of an autistic child as well as Amanda Radcliffe did in the following essay:

Have you ever been caught in a maze? Winding around a corn field, in a themed haunted mansion, or at the house of mirrors on the boardwalk? Remember Harry Potter’s adventure inside a maze in his last tale, Harry Potter and the Prisoner of Azkaban? We all know the feeling. Lost and wandering, not knowing which direction to turn, or where to go, thinking we’re home free, only to find a dead end and the need to return all the way to the beginning. So many hopeful paths explored often leading to only disappointing turn backs. Usually there’s a lot of backtracking before you find your way.

That’s what living with autism is like.

If I had a nickel for every time someone’s asked, "why does your son do that?" Maybe he’s screaming, flapping his hands, walking on his toes or throwing a tantrum like a two year old. He is six. Maybe you’ve asked him a question and he just looks away. Truth be told, I don’t know why he does these things. I have yet to find a doctor, therapist, teacher, or psychic for that matter who can tell me exactly what’s happened with my son Callum, how he got this way, and what on God’s green earth is the best thing to do about it. So, when I’m asked, "why does your son do that?" I often respond that I simply don’t know. That modern science hasn’t figured it out yet and I’m just a worried mother trying to love him and raise him the best way I can. Finding our way, lost in a maze.

Autism is a neurological disorder typically appearing in the first three years of life and primarily effects social interaction and communication skills. It is what’s known as a spectrum disorder which means it can be mild or quite severe in its manifestations.

A primary challenge of having a child with autism is that no one has the answers for you. No one can tell you what the best course of treatment is for your child. How to best help them reach their potential. Each child’s symptoms and needs can be so different. So we wander. We educate ourselves as best we can. Here, I must simply interject to all of you kind hearted souls who call the mom you know who has a child with autism when you see a snippet on TV, trust me, we’re on it! You learn more than you ever imagined about something you couldn’t possibly dream of touching your home and your family. Education encompasses so much in the world of autism; gluten & casein free diets, auditory processing, sensory integration, supplements, B12 shots, chelation of heavy metals, drugs galore if you are willing, therapies such as floortime, RDI, ABA, IEPs, IUs, Special Education and the list goes on and on and ends somewhere around swimming with dolphins and Zoloft!!!. These are the choices we’ve been making when the ones we should be making are little league baseball or spring soccer, bicycle or skateboard, Power Rangers or Batman?

So we work our way slowly through, always wishing for that bird’s eye view to the finish. So many agonizing twists and turns. Some have been helpful and some have been incredible wastes of energy, money, and most importantly, time that we don’t have to waste. I now fully acknowledge that a jerk can sell a desperate mother just about anything. There is no price tag on hope.

We are fortunate to have excellent professional advice. A phenomenal DAN (Defeat Autism Now) doctor, a therapeutic team leader who’s as vested in our son as we are, teachers who care, a wonderful supportive family, our sense of humor, and genuinely good hearted friends who call when they see that snippet on TV. We are grateful.

On good days, when Cal is talking, laughing, playing with his sisters, and had a great day at school, I think for a moment that just over the hedge, I might glimpse the way out. A spot of daylight is there, visible through a small opening. Normal, or officially known as "neurotypical", boys are there playing happily, waiting for Cal to join them. And then like Harry Potter’s infuriating maze, the way closes off and we step back again. On bad days, when he’s hit and bit and barked and screamed, I am lost, huddled on the ground in a corner weeping and wondering what will ever become of my son. Will we ever escape the cruel labyrinth of autism?

We stood at the daunting entrance three long years ago and still we fight every day to find our way. I’m a smart and reasonable woman and I realize we may never find the exit, but we’ve made progress. Hedges hurtled, obstacles crossed, demons exorcised, paths blazoned, we keep fighting forward, two steps ahead one step back. After years of hard work, primarily his, Cal is tremendously better than he was at the age of three. We still have far to go and there is no time to rest for the weary.

I gotta run, I think I spot some light just around the next corner…"C’mon Callum! Let’s keep going! That’s it baby… one more step."

Of course opened, honest dialogue is good no matter who we are talking with. Our children want to know our truth no matter what age they are.  They want to know our dreams and fears, what makes us happy and what hurts us.  And they want us to know that about them.  Most of us devote a great deal of energy protecting them from our "real feelings".  And we wind up protecting them from intimacy and honesty.  Look forward to " seeing " you tomorrow!  On the web chat tomorrow