An Ordinary Night

I just gave the babies a bath (with bubbles and colors, of course!) and carefully brushed out Juli’s hair, just like I have done so many times before. Tonight seems like an ordinary night.

Everyone is in warm jammies and ready for bed.

Nobody is crying or screaming. Nobody is scaring us with their lack of tears while crying. Nobody is throwing up. Nobody is unresponsive when I ask a question.

It just seems like an ordinary night…

With the sheer amount of stress chemicals that have flooded my nervous system for the past week, this sudden return to normalcy is jarring, a shock to the system. I still feel like I’m in “fight or flight” mode. There are no life and death decisions to be made tonight, only the choice between Minnie Mouse or Hello Kitty pajamas (she chose HK, by the way).

I was combing Juliette’s hair, reflecting on how long it’s getting, how beautifully soft it is, looking at her funny little cowlicks in the back, just thinking…..”what if I never got to do this again?”

What if? What if? What if?

I could have lost her.

A friend had commented on my facebook post that her son had once also been hospitalized for a week with dehydration due to a stomach virus, and that it hadn’t really hit her emotionally until they got him home. I think that is where I am right now. It’s hitting me now.

I could have lost my baby girl.

I had no idea, when I picked Lennon up from school on Thursday afternoon and he handed me a note scrawled on a red post-it that said, “Lennon threw up at school today. Just thought you should know so you can keep an eye on him…”

I had no idea that this would set off a chain reaction of events which would include all three of my children becoming so violently ill and so dehydrated that over a span of several days, we would have three separate ER trips for IV fluids, and Juliette would be transferred to Children’s Hospital, poked 21 times in search of a usable vein, and be unable to walk on her own or get out of bed for several more days.

Can I just say that my husband was AMAZING through all of this?  He was.  Truly amazing.  He even took care of me – as well as the babies – the one night that it was my turn to puke my guts out (and have massive panic attacks due to my emetophobia).  Even though I have felt a bit disconnected from him during this whole ordeal, since we were alternating shifts at the hospital while the other slept or took care of the boys, this whole experience has brought us closer together.

All five of us are back together as a family again.  My babies are all here with me right now.  We are home.  There is laundry to do (oh, so much laundry), phone calls to make, work and therapy and school to go back to.  Yes, it just seems like an ordinary night.  Things are returning to “normal.”

Why do I feel like I may never be the same?

{ Image is a profile view of Juliette, sleeping in her bed at Children’s Hospital, next to a rainbow-colored sock monkey that was given to her by her Nana.  She looks impossibly beautiful.  ❤ }



The Empathy Fallacy

Even if you know very little about autism, I’m sure you have heard that one of the main symptoms is a marked lack of empathy.

If you take just one thing from my blog, let it be this: the lack of empathy thing is complete and utter BULLSHIT.

Autistic people have trouble understanding facial expressions, body language, and other forms of nonverbal communication that make up a lot of how neurotypical humans relate to one another.  However, this does not mean that we do not understand, experience, or care about the emotions and thoughts of others.  All of the autistic people I have ever known were extremely kind, fair, loyal, and caring individuals.  How could one possess those traits without having any empathy for their fellow man?

Autistic adults describe, time and time again, how they experience a sort of hyper-empathy.  They sense the emotions of those around them and it can be extremely overwhelming.  Personally, I have recently been diagnosed with mild Autism Spectrum Disorder (aka Asperger’s) and I consider myself an empath (this means someone who takes on the emotions of others as if they were his/her own).  As a child, I was always described as “highly sensitive.”  If I am in a room with lots of people, I pick up on everyone’s emotional states, or what I think of as their “vibes.”  These emotions come rushing in at me from all angles, and I don’t always have time to fully interpret them.  I might sense that someone feels angry, and misinterpret it as anger toward me.  Milder emotions such as slight annoyance feel HUGE and stifling and scary to me.  At the same time that I am trying to filter through and process all of the “vibes,” I am also trying my hardest to act “normal.”  I struggle through small talk (“OMG what am I supposed to say?  What was that person’s name again?  Is it my turn to talk?  Oh shit, I just interrupted her!  Am I supposed to keep looking at her while I talk to her?  Maybe I should just look down….but she’s still looking at me.  Why is she looking at me like that?  Do I have something on my face?  Oh crap, what were we talking about?!”)  Basically, 90% of the time that I am interacting socially, I am terrified and completely overwhelmed and trying very hard to act like that is not the case.  Even minor social interactions, such as making a phone call to schedule an appointment, require a lot of mental preparation and “scripting” in my head beforehand, and also a lot of recovery downtime afterward.  Only when I am alone can I exist with only my own thoughts and feelings.

I am never unaware or uncaring of other people’s emotions.  I am TOO aware, and care TOO much.  And this experience is not exclusive to me.  Autistic people continually describe similar experiences of hyper-empathy.  Just because we experience the emotions of others differently – by somehow sensing them or absorbing them into our own emotional realm, rather than inferring them based on eye contact, tone, or body language – does not mean we are not empathetic.  A common slogan for autism awareness is “different, not less” and I’d say that definitely applies when it comes to empathy: we simply experience a different form of empathy (one that is more intense, confusing, and overwhelming), not less empathy.

I’ll give you an example of an autistic child showing his amazing capacity for empathy:

My youngest, eighteen month old Baby Roland, recently got very sick with croup.  He was having a lot of difficulty breathing, so we decided to take him to the Emergency Room on a Sunday night.  My oldest, seven year old Lennon, insisted on coming along.  We were in the ER for five hours, and Baby Roland had to get a steroid shot and a nebulizer treatment, which he screamed at the top of his lungs through.  Poor Lennon was pretty freaked out, and basically cowered in the corner through the whole nebulizer ordeal.

On the way home, we had a talk.  Lennon and I have our best conversations in the car while I am driving.  I think it’s because there’s no pressure to maintain eye contact with me or attempt to decipher my facial expressions.  He can just look out the window and think things over at his leisure.  We have had some really fantastic discussions while driving, and this one was no exception.

We started talking about how glad we were that Roland was feeling better (as he snoozed in his carseat behind me, his inaudible breathing like music to my ears).  I mentioned how the nebulizer had helped him so much, even though he had cried and fought me on it.  Lennon hesitated, then said, “that was scary, Mom.”  I nodded in agreement.  “Yes, it was.  I was scared too.”  Lennon interjected, “But – Baby Roland was the most scared…”

I told him that he was absolutely right.  Baby Roland was the most scared.  And he was counting on me – his mother – to be in control and to help him through it….even though I was scared as well.  Being a parent is a big responsibility.  Lennon reflected on that for a moment, then said, “that must be really hard for you.”

Again, he was absolutely correct.  And again, I was blown away by the sensitivity, empathy, and insight of a small boy.

I told him how some of the scariest moments of parenting, for me, have been when my babies were sick or hurt.  I described what happened when Lennon was born, how he’d had collapsed lungs and was rushed to the NICU.  For four days, I watched my baby struggling to breathe, hooked up to oxygen and wires and big, scary, beeping machines, feeling so afraid and helpless.  He was my first baby, my special baby boy that I had wished for.  And he was STRONG.  He was a fighter.  He got better quickly, and in four days, he was ready to go home and be with his family.

Lennon listened to my story, gazing out the window, reflecting.  He murmured softly, “Mom….I’m sorry I did that to you….”

Tears sprang into my eyes.  “My son….you didn’t do anything to me!  This was not your fault.  It was just something that happened.  We helped you through it.”

He said, “That’s what family is all about.”

Yes, it is.

Yes, it is.

Now…..tell me again how autistic people don’t feel empathy?

{ Image is a photo of Lennon and Roland in the Emergency Room.  Lennon is smiling and leaning toward Roland.  Roland looks very sick. }