Meeting: Life, Interrupted

[caption id="attachment_848" align="alignleft" width="300"] Panel discussion about social media and digital story telling.[/caption]

On Saturday, I had the distinct honor of serving on a panel discussing social media with Suleika Jaoud an amazing young woman who blogs about her experience as a young adult with cancer. Her blog, entitled, "Life, Interrupted," discusses the many complications being diagnosed with cancer in her 20s. This intimate snapshot into the interruption of Suleika's life offers her readers a unique understanding of the person she is and how her experiences in dealing with her diagnosis has shaped her identity.

I will admit I was a bit start struck when I met Suleika. She is a hero because she uses her gifts and life experience to increase awareness about the struggles of being a

[caption id="attachment_847" align="alignright" width="300"] "Suleika Jaouad recently spoke at the Leukemia and Lymphoma Society’s Federal Mission Day about the costs of cancer treatment for insured patients."[/caption]

young adult fighting a life threatening disease and advocates for resources.  Her most recent, blog, discusses the cost of cancer.   Like many young adults with  a chronic illness she worries about what she will do when she is longer eligible to be on her parents' insurance.  And what's more she brought up a point, I myself, have often overlooked.  Patients are reluctant to talk with their doctors about the cost of cancer treatment, she references a recently released study that found cancer patients are hesitant to discuss the steep cost of cancer care with their doctors.

Her comments made me think of my experiences with the costs associated with raising a medically involved, special needs child.  I ask social workers about programs that might be able to offset costs, search for grants, but I too, rarely talk to doctors about the cost of care.  My husband and I are both well-educated professionals, we make a decent a living as such we feel like we should be able to meet the medical and developmental needs of our children.  However, we are quickly realizing that meeting the medical and developmental needs of Caroline is a costly endeavor given the unwillingness of insurance companies to recognize proven treatment options for autism, such as ABA.

 There are many common bonds that link millions of Americans who are at risk of or are crippled by medical bills. And it is sad that in this modern age, when worrying about a life threatening or life altering condition we must first think, "Can I afford to treat this condition?"

Thank you, Suleika for sharing your story, your beautiful spirit and for helping others learn how to do the same. It is only through humanizing policy decisions that change will occur,thank you for being a citizen lobbyist.

Going to War: An IEP Meeting in Texas

A process wherein the recommendations of very well regarded doctors and therapists who have worked with Caroline for years are disregarded and I am asked to "trust" Northside Independent School District because they are the self proclaimed best district in the State of Texas is a terribly broken system.
Let me give a flavor of some of  the brilliance that was shared during the IEP meeting (in Texas it is called an ARD ):

• You are living in a big city now, San Antonio. Yes, that's right you might not have heard of Chicago.


• There is some controversy over whether oral exercises and feeding will encourage verbal skills-the research is out of Boston. Any accommodation, I request must be an established, researched supported practice linked to an educational goal. Thus, do not attempt to substantiate why a support will not be provided because "emerging science is creating controversy in the field." 


• Caroline has not demonstrated that she needs that level of support, yet, so we cannot provide it. Heaven forbid, you actually do what is in the best interest of my child. And yes, she has demonstrated she needs that level of support you just haven't seen it with your own two eyes.  
  


• Caroline will learn a lot from being with peers. Did you miss the part of the evaluation where it was explained and even demonstrated that Caroline does not acknowledge her peers. A screaming child came into the room and Caroline did not even look in his direction.


• The PPCD teachers and aides are very good at integrating therapeutic techniques into the classroom environment. That is all well and good but I believe OT, PT,and Speech therapists all have advanced degrees because they work as professionals in specialized fields requiring advanced training. When the techniques they suggest are applied through another untrained individual--it is in effect creating a funnel--and reducing the effectiveness of the services received.  


• You need to give us the gift of time. The gift of time?! Lady, have you read the literature 25-40 hours of therapy a week. You want me to give you time? That is a very valuable gift.

Not enough time was allotted for the meeting. The administrator who was present, I believe was called the day before because I was labeled as "difficult" parent.  There were many tense moments during the meeting. The meeting was held on Friday afternoon.  On Sunday night, I sent an email explaining that we planned to appeal the IEP because we did not think it provided Caroline with the level of service that would ensure her safety or ability to fully engage in her education. I was invited in for another meeting later that day to discuss my concerns.

During the meeting, the district representative apologized for the poor timing of the meeting.  She offered to reconvene the meeting before school started and she suggested that some changes could likely be made to Caroline's services. But the overall theme of the meeting is that Caroline was not going to get the level of service that her therapists from Chicago or her developmental pediatrician felt was appropriate.

Northside is a HUGE school district with amazing resources. I know they get extra money to educate Caroline because of her level of disability. Call me crazy for thinking that money should be used to educate my child.  Conversations with the district will continue because they have a responsibility to provide Caroline with an appropriate education. We, of course, will supplement with additional therapies but we will demand that public school provide Caroline with all they are supposed to-to free up our resources to for supplemental therapy programs. In other words, Caroline's time is valuable, very valuable, I don't want her wasting time in a classroom where she is not capable of being fully engaged.

Stay tuned for more tales as Kacie takes on special education in Texas. I am thinking about writing the "Art of an IEP Meeting" a Sun Tzu inspired volume with tips of how to navigate this awful process.

Please feel free to share your ARD or IEP experiences, especially with Northside.

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??

-------------

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.