Together We Can

When I first realized that there was something “wrong” with Caroline, I did not tell many people the extent of the problem. John and I suffered in silence. We did not stop volunteering for extra responsibilities at work, we did not bow out of bringing homemade snacks for Vivian’s class, and we did not sleep.  I did not want people feeling sorry for us.  But as things progressed and we could not hide some of the challenges we were facing-I became an open book. I felt like others could benefit from my experiences and my candor, so I shared.

I have navigated four different insurance policies and social service programs in three states since Caroline’s birth. My previous professional experience working for government and in nonprofits came in handy as it offered me a fundamental understanding of bureaucracy and advocacy.  This week, I hit a brick wall in terms of my ability to provide for my daughter.  You may have been following my attempts to get Caroline’s speech services covered by Cigna. I thought I had been successful; however, I learned this week that under the insurance policy offered by my employer Speech, OT, PT, and ABA are not services currently covered for those with a diagnosis of Autism.  I called Cigna and pleaded my case; they suggested I call my employer.  So I did just that, I called the VP of Talent.  He very politely explained that he could not make exception to allow these services to be covered for Caroline at this time. But he could offer a silver lininig: OT, PT, and Speech would be covered as of January 1, 2014.  I took a deep a breath and referenced the research that spoke about the importance of early intervention and intensive therapy—I choked back tears as I explained this decision could be the tipping point between my daughter, Caroline, being high functioning and being institutionalized as an adult. I explained that these four months are essential and that it would cost me $15,000 out of pocket to pay for Speech, OT, PT, and ABA.   He explained that as a parent he understands how difficult and emotional this must be but there was really nothing that could be done. Now logically, I know you catch more bees with honey but I also know I don’t have time to beat around the bush.  My employer was either going to be helpful or they weren't. I needed to know immediately so I could figure out my next move.

I have learned the hard way that having a child with special needs turns life into a game of chess. Every move needs to be calculated. One must always be thinking about the consequences of each and every action and this must all be done in a sleep deprived, highly emotional and stressed state. And believe me I know, life can always be worse. Today, I read a story about a loving mother who killed her severely autistic son because she could not receive the support she needed to treat the medical condition that exasperated his autism symptoms. Four years ago, I would have judged that mother and questioned her humanity--today, my heart aches for her son and for her.

In the moment,  when I was told there was nothing that could be done to get my daughter the medically necessary therapy she so desperately needs and I felt like I had exhausted all options I was mad, so mad. I was seeing red.  I could not think straight and I could not hold back the tears-strategy was not top of mind in that moment. All I could see was Caroline in an uncontrolled fit of rage because she was frustrated by her inability to communicate.  We had come so far, I had fought so hard every step of the way to make sure that Caroline was receiving the services and the support she needed—only to be shut down now. Now, that she was starting to really eat by mouth, now that she was saying “bye-bye” and “more”, now that she could walk up the stairs. We have overcome countless surgeries, feeding tubes, and daily therapy since she was six months old. I was not the parent who put her head in the sand when I saw a problem; I searched for an answer and for the best treatment options for my daughter.   I thought about taking FMLA so I could work with Caroline using some of the strategies I observed but I realized that we need the money I would receive from selling back my sick days.

I am angry and frustrated but mostly worried about Caroline’s future. I don’t where to point my anger anymore. Is it my employer’s fault, Cigna’s, mine, the government’s—who knows?  During this moment of crisis it is not prudent to wonder why this black hole of care exists—one that will likely bankrupt my family and many more like us. But rather, I need to focus on solutions that will allow Caroline to resume receiving much needed therapies.   

To help Caroline receive these much needed therapies donations can be made via giveForward.

Diagnosis

I wrote the following a few days after Caroline was diagnosed but was to not ready to share:

The words stung like nothing before and that is saying something as I am no stranger to tragedy or adversity.  I had been asking the question for nearly three years but now that someone was willing to answer the question-I wished I would have never asked.

Is it better to know?  Of course, it is.

Will I be able to come to terms with it? In good time.

What are the next steps? Fight, fight like I have never fought before.

Caroline is engaging, hardworking, funny, and joyful.  She also doesn't sleep often, is fed through a g-tube, has over a 40% developmental delay, and is medically involved.  And now, one of the best developmental pediatricians in Chicago feels like, "Caroline is on the Spectrum...she is not a typical presentation but she is on the Spectrum."

When I heard those words, the first thing I thought was at least we have an answer. But I didn't stay there long, I immediately drifted to do I agree with diagnosis? And have been stuck at what does this mean...for Caroline, for our family, for me??

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Today, I wrote:

Autism (moderate to severe), Mixed Expressive Language Disorder, Motor Coordination Disorder, Sensory Processing Disorder, ADHD, Failure to Thrive, Reflux, and Severe Global Developmental Delay. Everything preceding Failure to Thrive, we learned about in the last month.  At first, I wasn't sure about the Autism diagnosis but in the time since the diagnosis Caroline has picked up several obsessive behaviors, her need for sensory input is rarely met.

There is no time to process what this means.  The books tell me that I need to "grieve" for the loss of the parenting experience I imagined when I first discovered when I was pregnant; however, they also admit no responsible parent with a child who has received this diagnosis has time to do so.  Don't get me wrong, I find time to cry and places to direct my misplaced anger--sorry John and any telemarketer who calls me.

Ever since the Autism diagnosis was confirmed I have been mobilizing.  Our amazing developmental pediatrician recommended intense therapy around 40 a week. 40 hours a week! All the literature says early intervention is key to her success, it can make the difference between high functioning and not so high functioning.  I have been trying to get a straight answer out of my insurance as to what therapy is covered and how much therapy is covered for weeks. Based on the information, I have received the ideal amount of therapy would cost about $100,000 out of pocket for the first year alone. This does not count doctor appointments, prescriptions, eternal feeding supplies, medical equipment (weighted vests, etc), or transportation to all these activities.

Caroline is amazing. I want to give her the opportunity to reach her full potential and I will move the world to do so-but I also realize that resources are limited and we have to make tough decisions. I am coming to terms with the diagnosis but I am having a hard time coming to terms with the fact that we will not be able to provide her all the care and support she needs and deserves.  I spend countless hours researching programs, doctors, hospitals and just as much time reading books about kids who have had amazing outcomes trying to figure out how we get from here to there.

My last thought, everything does not  happen for a reason.