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.

The Estimation of Success

Caroline has the heart of fighter. She works hard, damn hard, to do things that come naturally to most people. Caroline is happy and content despite being medically involved and all that comes with that--pain, sickness, medical procedures, and in her case, severe developmental delays.  I have learned so much about life by caring for Caroline. But it is from how Caroline lives her life that I have learned many secrets of life.  She has taught me to preserve--she is my tortoise; she has taught me that a smile and a good sense of humor goes a long way; and finally she has taught me the "why" doesn't matter nearly as much as the "now what". 

It is with these lessons in mind that I will continue to fight and advocate for my daughter.  I have such confidence in her ability to set this world on fire because the obstacles that she is overcoming today are ingraining the qualities that will propel her to future successes: hard work, perseverance, good humor, humility, and spirit.  

I will never underestimate my daughter nor will I allow anyone else to do so. 

Transition

Transition has become a state of being for me and my family but I don't think that is terribly uncommon in modern times.  And I will readily admit, our pursuit of the American Dream has contributed to our state of constant flux. However, like any good parents we obsess over how every major decision we make will impact our ladies. And for the most part our choices have served us and our family well.  Our move to Texas allowed John to peruse an amazing professional opportunity, did not interrupt my career, and allowed us both to significantly decrease our daily commutes (mine went to nothing as I now telecommute).  But when we made the decision, what we really considered is how would this move impact the ladies: is Texas where we want to raise our kids, what kind of services will be available to Caroline, and is this a community where our family could thrive...

Well, it looks likes some of those questions will receive answers soon.  On Friday, we have a meeting with the local school district to find out how much support Caroline will receive.  To this point, we have been overjoyed with the support of the Early Intervention Program; however, as Caroline ages out in less than 2 months it is easy for them to give us what we want. I know Caroline will need services beyond what the school district provides but the early intervention is key to her success thus I do not want her spending her a large portion of her day in an environment where she is not receiving the intense therapy that she needs. Her Developmental Pediatrician suggested Caroline should be receiving 25-40 hours of therapy a week.  It remains unclear as to much of this medically necessary therapy our insurance will cover. What is clear is that if Caroline does not receive a reasonable amount of services from the school there are not enough hours left for her to receive the necessary therapies.

On Friday, when we have Caroline's transition meeting we will gain a great deal of insight as to whether or not we made a good decision moving to Texas. We will also learn if the school district will truly be a partner in providing my daughter with the access to education that every child deserves. I am cynical and am preparing for a fight but I would love to be pleasantly surprised.

Any tips from other parents who have successfully secured services through an IEP are more than welcome.

Illness to Identity

I knew as my eyes began to well with tears halfway through Andrew Solomon's TedMed Talk that this moment, this experience, would forever change my thinking.  The talk was amazing, the content thoughtful, and the delivery eloquent; but for me, the opportunity to hear this talk live just before Caroline finally received a diagnosis offered me much-needed perspective.

For a little over a year, I had been working very hard to overcome many of the emotional struggles that go along with being Caroline's mom.   Caroline is medically involved and developmentally delayed; a combination that until recently had not been explained by a medical diagnosis.  Thus I spent countless hours going to doctors appointments, researching specialists, working with therapists, and even more time worrying about her future.  The first year of Caroline's life was spent getting her healthy enough to live and the second and third years were spent searching for a diagnosis. For me, I spent Caroline's first year of life worrying, the second year focused on her delays and challenges, and it was only in her third year that I was able to let go and become her mother. It was during that time that Caroline and I developed our inside jokes and gained a deeper appreciation for each other.

It was really hard for me to bond with Caroline. She was fragile at birth and the loss of Brit was still fresh.  When Caroline came home she cried for 16 to 18 hours a day and I didn't know what was wrong but  despite what the doctors were telling me I knew something was wrong.  By the time Caroline was 4 months old, I was spending over 30 hours a week managing her care and talking about her "deficits" with various professionals. This does not even speak to the challenges associated with trying to feed Caroline--I would literally spend 90 minutes  trying to get her to drink an ounce of milk by mouth.

Today, Caroline eats about 80% of her calories by mouth, can walk-can run, uses over 20 signs, is starting talk, can pretend, and has the most engaging personality.  Her smile lights up a room and her laugh is infectious. Caroline is tenacious, loving, and thoughtful.  And today, I appreciate Caroline for all that she is and all that she can do.

Andrew Solomon's talk captured the essence of my relationship with Caroline and how her diagnosis shapes not only her identity but that of our family.  Regardless of the label, the set of traits that combine to produce a diagnosis for Caroline are part of who she is--just as her struggle to overcome or live with those challenges will be defining parts of her personality--and for that reason Caroline's illness is her identity.  Caroline's diagnosis may shape her identity but she is so much more than her diagnosis.

Turning Texas Blue

I am doing my duty to turn Texas Blue- I moved to San Antonio.

I will be completely honest, Texas was on my list of places I never cared to live. However, when the opportunity to be principal of Anne Frank Inspire Academy was offered to John--what was going to say--Texas?!, Hell No! Of course not. I did the responsible thing, what any loving wife would do,  I encouraged John to follow his passion and after he accepted the position and there was no turning back, then I started to complain.  I am only human, he wanted me to move from Chicago to Texas.

I have been pleasantly surprised by several things in Texas.  First, almost everyone I have met has been super friendly--but so much so that it is turn off. I love our new house, it has a huge yard and plenty of space for the ladies. Also, we decided last minute that Caroline needed to take advantage of her Early Intervention benefit before she aged out of the system.  We have already had an intake interview and services are starting on Friday!

So while Texas is never a place, I intended to raise my family--I will admit I have been pleasantly surprise thus far.   But you know me, here are some of the downsides--No Portillo's, I haven't found a park or playground yet, and it is humid!

Caroline's Mom

Caroline was born in Arizona. In Chicago, I became her mother.  Bonding with Caroline was difficult-I was not allowed to hold her until she was a few days old, it was nearly a week before I was allowed to try to nurse her, and she was fragile.  The pain of losing Brit was still real, I was scared to bond with Caroline until I knew she was going to be okay.  I held her while she cried for hours and hours, I tried to feed her, I took her to doctor after doctor, I advocated for services before most parents would admit there was a problem, and I reinforced the therapy at home.

In Arizona I worked full-time but mostly from home (I accepted a pitiful salary in exchange for Caroline being able to attend meetings with me). In Chicago, I began to work at an office. When I left Caroline the first day, it was so emancipating. I  realized just how much time I spent focused on all that Caroline couldn't do or her medical involvement. This was partially because of the countless hours spent every week speaking with doctors, therapists, and care coordinators.  However, when I took a break from constantly thinking about her challenges--I was able to transition my thinking.  I was able to enjoy my daughter, to play with her without thinking about how the play might help her achieve a certain milestone.  I was able to enjoy her joyful, loving, and spirited self.   I was able to become Caroline's mom.

I have always told doctors, "I need to know if we are saving for college or for Caroline's care after I die."  It is a lot of responsibility being Caroline's mom. I am working on realizing that I am also Vivian's mom, John's wife, a friend to a few, and someone with needs of my own.

Tomorrow night, the ladies and I will board a plane for San Antonio and start the next chapter of our lives.  During this chapter, I will learn to ask for help, not allow those who add unnecessary chaos to be part of our lives, and will share my journey for me,  for  fellow travelers and for those who just want to laugh and say, "I can't believe she actually put that in writing."

What Does it Mean?

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??