She Is Not Deaf

My daughter is joyful, jovial, sweet and crazy smart.  She is also a nonverbal sensory seeker who flaps her arms and screams uncontrollably when she becomes excited or frustrated.  Caroline is autistic; she is not deaf and she is not without feelings.

 I am Caroline's mother, caretaker and biggest advocate.  I am not deaf and I am not without feelings.

On more than one occasion a seemingly typical but curious adult has asked—within hearing distance of Caroline—What is wrong with her.  My visceral response: "Nothing is wrong with her but I question your upbringing and manners.  And to be clear when I say nothing is wrong with Caroline, I meant there was nothing wrong with her before she heard a total stranger ask: What is wrong with her."

Different, not less. 

My Medically Involved Daughter Is Not Trampling Your Pursuit of Happiness

“Two things that happened in 2012. We had two AOL-ers that had distressed babies that were born that we paid a million dollars each to make sure those babies were OK in general. And those are the things that add up into our benefits cost. So when we had the final decision about what benefits to cut because of the increased healthcare costs, we made the decision, and I made the decision, to basically change the 401(k) plan.”

Tim Armstrong, CEO of AOL

The actions of AOL under the leadership of Tim Armstrong are extremely disappointing and epitomize not only the current state of corporate greed but also that of the wealthiest 1%.  Mr. Armstrong makes $12,000,000 annually; however, he cited the $2,000,000 of medical expenses incurred by two newborn babies as the strain on AOL’s resources necessitating changes to employee benefits rather that his own compensation.

Deanna Fei, the mother of one of the “distressed babies” wrote a blog in response to Mr. Armstrong’s comments during which she eloquently spoke to the harm of  Mr. Armstrong’s greed ridden comments, “Our daughter has already overcome more setbacks than most of us have endured in the span of our lives. Having her very existence used as a scapegoat for cutting corporate benefits was one indignity too many.”

I cannot agree more with Ms. Fea’s comments that express her frustration and dismay that Mr. Armstrong felt it appropriate to not only lay blame for changing AOL benefits on the Fea’s newborn born daughter but also the insinuation that it was the Fea family who was greedy rather than Mr. Armstrong:

“Let’s set aside the fact that Armstrong—who took home $12 million in pay in 2012—felt the need to announce a cut in employee benefits on the very day that he touted the best quarterly earnings in years. For me and my husband—who have been genuinely grateful for AOL’s benefits, which are actually quite generous—the hardest thing to bear has been the whiff of judgment in Armstrong's statement, as if we selfishly gobbled up an obscenely large slice of the collective health care pie.”

Deanna Fea

[caption id="attachment_1212" align="alignleft" width="239"] Caroline, my distressed baby, shortly after being released from the hospital.[/caption]

The physical, emotional, and financial toll of giving birth to a “distressed baby” is great.  Our lives were forever changed by Caroline’s entry into the world.  The medical bills, lack of sleep, and endless medical appointments were overwhelming. We had to figure out how to close the substantial gap between insurance and the medically necessary care that Caroline required. I cannot begin to imagine what it would feel like if the medical care Caroline received was cited as a reason my employer chose to change our benefits package. Especially since one of the benefits of employer-sponsored healthcare is that there are lower premiums when all employees (not just the sickest employees) secure benefits…meaning that by creating a large pool of insured the risk is shared among many so when the unexpected happens—giving birth to a “distressed baby”—the burden of the cost is shared.

I also find it interesting that employer-sponsored health insurance was offered as a way to entice potential employees when the federal government instituted wage controls during World War II.  Essentially, fringe benefits like sick days, health insurance, and the like were not considered compensation so they were in affect a loophole that allowed employers to skirt wage controls. Fast forward to today as healthcare premiums are rising quickly many employers are doing everything they can to reduce healthcare benefits. Both commonsense and research dictate that access to healthcare insurance leads to less time off of work just as increased access to sick and vacation time increases employee productivity and engagement. But for some reason, most employers are not willing to learn from the examples of the few responsible employers who have managed to be very profitable yet provide employees with access to benefits that increase productivity, loyalty, and employee satisfaction—Google, SAS (Statistical Analysis Systems), and the Boston Consulting Group  to name a few.

To be fair, AOL and Mr. Armstrong are not the only examples of corporate greed trampling not only the livelihood but potentially the lives of the medically fragile members of the workforce (and their family members)—who are the backbone of industry and progress in America—they are simply the most recent example.  It is my hope that as a collective we will demand that corporate America treat those who keep America running with the respect and dignity we so rightfully deserve and in doing so allow the American workforce the ability to pursue their happiness or version of the American dream.

And to Ms. Fea thank you for speaking up and sharing your story.

Missing Brit: 6 Years

[caption id="" align="alignleft" width="223"] Brit snuggled with her baby blanket. This picture was taken the summer before she passed away, when she came to visit me in Northern Virginia as part of the celebration of her 9th birthday.[/caption]

It has been six years since that painful night when I held Brit’s hand as she left this world.  When I remember that night, I think about how her baby blanket was nestled close to her face as it was almost every time she slept. That image of Brit—with her baby blanket on her death bed—is an image that both comforts and haunts me. It is always unsettling to lose someone you love but particularly so when she slept with baby blanket.

For those who want to know more about Brit's medical battle, see here.

The flashbacks from that night are vivid and real, I can almost touch them. I remember the moment; I realized I would never speak to Brit again. I was standing in her PICU room, after she just had just been connected to ECMO, think heart and lung machine.  One of the nurses looked very concerned.  I asked her what was wrong.  She explained that even though she was pushing fluids, Brit’s blood pressure was not increasing.  At that moment, I knew.  I knew everything, I feared since I got the phone call from my mom telling me that Brit had an infection in her brain that required immediate surgery was about to come true.  I was overcome with waves of emotion that included immense sadness, sorrow, and relief. Yes, relief. It was excruciating to watch Brit experience so much pain and being so scared—so I felt relief, relief that Brit was at peace and would no longer have to endure the torture of inconclusive medical tests and medical procedures that in the end proved to be ineffective.

Over the years, the images have changed.  I am thankful the image of Brit seizing on full life support is one that does not enter my mind as frequently as it once did. When I think back to the days following Brit’s death I am more often reminded of family, friends, colleagues, and strangers who offered support to me and my family during our darkest hour.  I rarely think about having to track down Brit’s body as the hospital was slow in releasing her remains to the undertaker. I don’t think about how painful it was to write her obituary, the program for her funeral, and her eulogy but rather I remember that when I sent the order to Office Depot to be printed the manager not only printed the programs for free but created a beautiful poster of Brit that still hangs in my parents’ house today.

I still miss Brit every day. But I am now in a place where I allow myself to takes breaks from the pain of missing her and for brief moments relish the joy she brought to my life.

I still feel an immense responsibility to keep Brit’s memory alive.  I still talk about her and appreciate when others bring up her name because it means they remember.

So today, on the sixth anniversary of Brit’s passing I encourage all who knew her to share a story about her, to remember her, and to be thankful for all that she brought to this world.  As for me, I will share clips from the memorial video that played during her wake—a picture is worth a thousand words. Here are some tidbits as to why Brit was so special.

My favorite exchange with Brit:

Me: I am going to tell you a secret, you are my favorite.

Brit: I am everybody’s favorite.

In loving memory of Britney Nicole Wielgus, Aug. 6, 1998-Feb. 9, 2008, a life that was cut far too short.

Tracking Our Kids with GPS

As a former ACLU staffer who worked on privacy issues and the mother of a young nonverbal daughter with autism who wanders, I feel uniquely qualified to weigh in on the bill proposed—“Avonte’s Law—by Senator Schumer that would provide funding to the US Justice Department to pay for voluntary GPS tracking devices for children on the autism spectrum or who at risk for flight.

When I first heard of how Avonte Oquendo, a 14 year old, nonverbal, boy with autism wandering from away from Long Island school my heart sank.  How could the school let this happen?  But then I remembered I am only responsible for only one nonverbal child with autism, who wandered away from my house. The day Caroline wandered away was the scariest of my life.  What happened to Avonte is a tragedy and unfortunately it is a tragedy that almost every parent of a child with autism fears.

Children with autism are at particularly high risk for wandering, as many parents well know. It's estimated that half of children with autism are prone to wandering, according to a 2012 article in the Journal of Pediatrics. The majority of fatalities—60 since 2008—have involved drowning.

The press has largely referenced the Justice Dept. program as being for children with autism, though it is also for kids with other conditions and developmental disorders that put them at risk for flight. Devices can be worn on the wrist, clipped onto shoelaces or belt loops, kept in a wallet or sewn into clothing.

So while, I have professionally advocated for privacy rights for both adults and minors; and while, I was horrified to learn the public school district where my daughters will likely attend school was experimenting with RFID chips; I do support “Avonte’s Law”.  My family will likely be one of the families taking advantage of the program—given the opportunity.  However, I will share that I do have some concerns—mainly that the tracking devices will lull caregivers into a false sense of security.  It takes less than a minute for a child to drown or be hit by a car.  Having said that, I think the devices are a step in the right direction and further will provide an opportunity for local law enforcement to learn more about autism.

As is too often the case, it took a tragedy that captured the public’s attention to bring about change.

Explaining 'Different, Not Less' to a 4 Year Old

"Why doesn't Caroline talk like a big girl," Vivian asked at dinner the other night.  This was followed later in the evening with Vivian sharing her growing frustration with Caroline's response to excitement which includes, screaming, flapping her arms, and kicking.  I knew the day was fast approaching when Vivian would notice that Caroline was different.

I explained to 4 year old, Vivian, "Caroline is different, she has something called autism. Caroline's autism makes it difficult for her to control how loud she speaks and many of the movements her body makes.  And Caroline is starting to talk like a big girl she is saying "night, night" and we can communicate with her using sign language."

Vivian took a very thoughtful pause, I could tell something was weighing on her, "So because Caroline has awesome she doesn't have to use her inside voice..."

"No, we still ask Caroline to use her inside voice but it is much harder for Caroline to use her inside voice. You remember when you were sick a few weeks ago and you were sneezing? Well you could not stop your body from sneezing and sometimes Caroline cannot stop from screaming or flapping...does that make sense?"

"I guess but I don't like when she screams all the time."

"I know, Vivian. But we have to be understanding. I don't think Caroline likes to scream all the time."

This conversation was both a lifted weight and an added weight. I want Vivian to feel comfortable asking questions and to share her frustrations but it is also hard knowing that she is now frustrated by Caroline for things Caroline has no control over. How do I explain the concept of "different, not less," to a 4 year old?

Lean In: When Life or Caroline Bites

“Ouch, that REALLY hurt! No biting, it is not okay,” I loudly exclaimed after Caroline viciously sunk her teeth into my flesh.  At the time Caroline was finishing an ABA session, her therapist did a great a job of not letting on that he thought I was being dramatic, “Kacie next time she bites you lean in, so you force her to release without doing anything that reinforces the behavior.”

Caroline’s attack was not unlike the vicious attack I had been receiving from life over the last eight weeks or so.  Just before, we left to celebrate the holidays with my family in Arizona; a notice was posted on the front door of the house we rent informing me that the property had been foreclosed on.  Later that same day, Cigna informed me that Caroline's enteral nutrition supplies would no longer be covered and to add insult to injury, Cigna would be requesting that I reimburse them for two months of supplies. Caroline is also in the midst of what seems like an endless cycle of medical appointments and tests—she has developed a mysterious limp, her feeding tube site is very, very irritated, and she is having a series of studies to look into several instances of observed seizure like activity (the seizure like activity is not as bad as it sounds, she kind of freezes for up to a minute or so).   And some other stuff happened - but I don't have to tell you people everything.

It seems like “lean in” is trending advice, lately.  Not only did I receive this advice from Caroline’s therapist but also from Sheryl Sandberg regarding my career. Okay, to be fair Sheryl and I are not close personal friends but she advised me and every other professional woman to lean in, in her bestselling book: “Lean In: Women, Work, and the Will to Lead”.  So if leaning in was good advice to defend against Caroline’s sensory seeking teeth and to achieve my professional goals—I thought maybe it couldn’t hurt with addressing the rest of my life.

So I leaned and I leaned until I almost fell over.  I was taking Caroline to appointments, filling out paperwork for doctors, fighting with the insurance company, applying for social programs, looking for alternative educational environments, pouring myself into my work, and trying to work on New Year Resolutions…ha I know!  I felt like I was getting nowhere fast.

I gave up.  I stopped making calls and became disengaged from the perils that are my life. I bonded with my electric blanket and caught up some mindless television.

A week or so later, Caroline got accepted to a charter school for children with autism that offers much better services than the public schools.  We are still trying to decide if we will accept the spot. Caroline has an absolutely amazing teacher and all the therapists who she works with are wonderful but the district will not provide Caroline with the frequency of services she needs.  Needless to say it is good to have choices.  Later that same day, we got a call that Caroline was accepted to a program where students at UTSA under the supervision of their professor would provide Caroline with ABA therapy for an hour and half, four days a week (for a semester) at almost no cost.  The challenge here is that the only time available was during Caroline’s school day so we may have to pull her out of school.  But again, it is good to have choices.  And then we found out that we might have unlimited speech therapy benefits with demonstrated medical necessity.  So if the speech therapy comes through we could put together a pretty good program for Caroline for the rest of the school year. Again, on that same day I had a call with some members of the community soliciting my professional advice for a nonprofit organization---this made me feel like a part of the community. And it also allowed me to step out of the monotony of my daily life to think about something beyond my family and beyond my job and to use my talents to benefit others.

So while everything is not perfect and there is still a lot of uncertainty, I am doing my best to lean in whether  Caroline - or life -  bites.  To be honest, I am not sure if leaning is the right strategy for me. I feel like I lean so far in that I regularly flirt with my tipping point. But in this moment, I don't know if it is possible to avoid my tipping point. If I do tip over I will have John write a post a share a picture :)

Dark Days

The darkness that surrounds me is my only friend, it is quiet, soft, and holds no expectation. I am stumbling through my days; I expend so much energy trying not to be overwhelmed. I desperately want to be someone who handles a time like this with grace and dignity. But then I think… what does grace and dignity look like during a time like this…does simply surviving count?

I crave stability which is strange because for so long it has been absent in my life.  Over the last several weeks, I have been nearly crippled by a series of events that, if occurred independently, I could completely manage but collectively they are enough to overpower me. What does it take to overpower and overwhelm Kacie?  It takes:

• The house we are renting to be foreclosed on a week before Christmas;


• John’s job being in a jeopardy for a variety of reasons, none of which are his doing;


• Cigna has decided to no longer pay for Caroline enteral nutrition supplies;


• Cigna (despite lawsuits finding against them) still refuse to pay for Caroline’s ABA therapy;


• Caroline is requiring numerous medical tests since it is the beginning of the year we need to pay for all tests out of pocket;


• Caroline’s school district is not providing her with the services she is entitled to have a “free and appropriate” education;


• The six year anniversary of Brit’s passing is coming up, always an emotional time of the year;


• And though, I know I need more help I don’t have the time or resources to get said help.

For weeks, I have been working on a post titled, “If Your Child or Life Bites, Lean In.” As the title suggests, I have been trying to lean in, to focus on solutions.  But that is getting increasingly difficult.  I am having trouble turning my mind off at night so I am not sleeping much.  It is also hard to prioritize which challenge to work on…should I worry about housing or paying for Caroline’s enteral nutrition supplies?  Should we pull Vivian out of school to save money?

I love my daughter and will stop at nothing to get her the medical and educational care she needs and deserves. But I also love Vivian and need to provide an environment that is appropriate for her, too. And, John is under just as much stress as me.  We lean on each other and when the going gets tough, I can get mean.  Essentially, I don’t where to focus my energy: Cigna, Caroline’s school district, our former landlord (who still has not returned our deposit), or trying to help John find stable employment.

Here’s to hoping that karma exists.