It is Only Fair

A few months back, I wrote about my less than wonderful introduction to the ARD (IEP) process in Texas.  I felt like the process was adversarial and the district's primary concern was not setting a precedent of providing adequate services.  I also shared frustration about the model the Northside Independent School Dirtrict uses to provide related

Why Autism Speaks Doesn't Speak for My Family

It has been about six months since Caroline was diagnosed with Autism.  My heart ached for what the diagnosis meant for Caroline, for our family, and for me.  I immediately went into the information seeker phase; since Caroline's diagnosis I have read Far From the the Tree, Carly's Voice, The Way I See It: A Personal Look at Autism and Aspergers, The Reason I Jump, Look Me in the Eye, The Spark, not to mention countless blogs on the subject of Autism.  And I have followed all of the major advocacy organizations on social media.

Recently, I became aware of a controversy regarding the largest and most influential of advocacy organizations for persons with Autism, Autism Speaks.  The deeper I dug, the more my heart sank. My family has only been on the journey with Autism for a short period of time, but we believe it is impossible to separate the essence of Caroline from autism. In other words, Caroline would not be the same person without autism and even if a cure were to be found, I am not sure how we would respond.  Don't get me wrong, Caroline's life is full of challenges and my heart aches for each of these challenges. However, some of the most defining characteristics of Caroline are those that are a result of autism: her obsessive love of frogs, her sensory seeking behavior, her wonderful laugh--frequently at inappropriate times- are all from autism. Our family's approach to autism is what Andrew Solomon, author of Far From the Tree, would consider the identity model, "Fixing is the illness model; acceptance is the identity model; which way any family goes reflects their assumptions and resources." As logic would follow we invest mightily in resources that will allow Caroline to live the most autonomous life possible (ABA therapy, OT, Speech, music therapy, and opportunities to engage with typical peers).

The more I learned about the mission and agenda of Autism Speaks the more I realized their agenda is based on the illness model. This is demonstrated by the fact that in 2010, Autism Speaks spent just 4% of their budget on providing services to persons with autism. Also, recent comments by their leadership have forced me to realize that Autism Speaks Does Not Speak for my Family.  Suzanne Wright, who co-founded Autism Speaks in 2005, posted a statement (the day before the launch of the Autism Speaks to Washington Summit). Her words were difficult to read.  She describes the 3 million children living in the United States with autism as "lost" and "missing". She then goes on to talk about the struggles endured by the parents of children with autism:

These families are not living.

They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely – 24/7.

Later, she questions:

And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?

Three times in her commentary, she explains horrible situations that are followed in bold typeface by:

This is autism.

It saddens me that Ms. Wright failed to identify the amazing gifts those with autism share with the world. And further that she fails to realize that autism is part of my daughter's identity-not her whole identity but part of it. Finding a cure for autism is not the same as finding a cure for cancer it is much more complicated. As Jim Sinclair has explained autism is not an appendage:

"This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say,

"I wish my child did not have autism,"

what they're really saying is,

"I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead."

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces" (Sinclair).

[caption id="attachment_1166" align="alignleft" width="300"] We want acceptance, not a cure.[/caption]

With autism comes challenges but Caroline comes with autism. During the tough times, I remind myself autism is tough, loving Caroline is easy. My job as Caroline's parent is to give her the tools to be as autonomous as she can be in this world; to allow her to unlock her potential, and to let her decide how how she will use that potential  It is surprisingly similar to my job as Vivian's parent - the only difference is that I need the help of trained OT, PT, Speech, Feeding, and ABA therapists to unlock Caroline's potential which requires tremendous resources.  Ms. Wright's words left me looking for an organization that was more closely aligned with our family's advocacy needs. But when I learned that the Judge Rotenberg Educational Center-- an organization with a documented history of abusing persons with disabilities--tabled at the Autism Speaks to Washington Summit, I almost lost my lunch.  Lydia Brown, an Autistic advocate, provides a complete and chilling history of the Judge Rotenberg Educational Center.  I just cannot conceive of supporting an autism advocacy organization that would endorse this group - a group that uses a form of electric shock aversion therapy -  as a trusted resource.

I want to be clear, I know that I have blogged about how trying it can be to be the parent of a child with autism but I hope that I have also shared the joys it brings. Part of the reason that parents of kids with autism have to work so hard and have such long days is because there is not adequate support or services for our children or families. Another major challenge is finding true resources that will help with autism, but when Autism Speaks considers an organization that has sued for the right to use electric shock aversion therapy on persons with autism as a resource, they demonstrate their true goal of eradicating autism, not supporting persons with autism.  For these reasons and many more, Autism Speaks does not speak for me. 

I Can See Clearly Now

The morning after accompanying Caroline to her sleep study, on a day when our only vehicle is in the shop, and when my to-do list is a mile long is the best day for "it" to happen.  "It" made me realize that the hustle of bustle of simply trying to keep up with my life often causes me not to stop and celebrate the truly wonderful moments in my life. I get caught in the minutia of the mundane, find myself focusing on what I believe has to get done (the SSI application, the medical history form for this appointment or that, applying for this grant, cleaning my bathroom so it doesn't get condemned by the health department) rather than getting done what I can and taking time to enjoy the splendor that surrounds me.

Flashback, at this time last week I was writing a blog about a bout with depression that has been particularly challenging.  I wanted to sit on the post of a while before sharing; sometimes I wonder if I share too much of myself online, the answer is, yes I do.  But I hope that other people benefit for my experiences and my honesty and at the end of the day if someone thinks less of me for sharing a real part of me, I guess that is more telling of them than me.  So here is the post I started writing last week...

There are days that I would rather not engage with the physical world but rather just watch the digital world float past me. On these days, I am most comfortable nestled in my bed, alone, behind a closed door.  I don't mind the sounds of my family enjoying life, they are somewhat comforting-but I have no desire to join in their fun. Despite the guilt, I cannot force myself to clean the house, fill out the mountain of paperwork, or do any of the other million things that are on my list. During the week,  I drag myself down to my office log on to my computer and force myself to respond to emails, write documents, and continue to stumble through my professional day.

I felt the perfect storm brewing so I went to my doctor and began anti-depressants and anti-anxiety medications at the beginning of the summer.  I started the meds just in time, my mood and energy level plummeted just as my stress level soared.  Perhaps the chemical imbalance is responsible for some level of clairvoyance.

I have an established history with depression and anxiety.  At times, when I don't have the energy to move, I wonder if the depression is caused by the many challenges in my life or if the challenges in my life seem greater because of the depression.  When the depression sets in, despite my best efforts, the only thing I can see is the injustice that surrounds me.

I laugh at my life whenever possible, I try to embrace the joy and wonder that surrounds me.  But there are days, days like today, when I can no longer muster the strength to try and convince myself that I am just tired or that I will get a break soon.  I am physically and emotionally exhausted.  Many activities I used to find enjoyable are now a chore.

[caption id="attachment_1157" align="alignright" width="300"] The ladies and I spent most of Saturday at Morgan's Wonderland. It was a great day--a day that allowed me to see the good the surrounds me. Including what an amazing big sister Vivian is.[/caption]Fast Forward.  I told John how I was feeling and as always he rose to the occasion. On Saturday, he suggested that I take the ladies on an adventure and that he would stay home and clean. And then on Saturday night, he told me to go see a movie by myself.  He allowed me enough space to wallow and escape while creating an opportunity to enjoy the wonderful things in my life.

On Sunday night, I was really tired. But Saturday was a good day and I decided that I was going "to fake it until I make it." So I mustered the energy to take Caroline to her sleep study.  It was an experience...Caroline was all over the place, kicking her legs like a mad woman (in her sleep) and took up most of the bed.  But she woke up so happy, so very happy. I hardly realized how little sleep I got because her joy was energizing.

When we got home, I put Caroline in her room to "rest" for awhile...it was only 7 am.  I crawled into my bed planning to sleep for about three hours or so.  When I woke up, I went out to the loft. Kristen was carrying Caroline to her room...so Caroline's back was to me.  I snuck up on her...and tapped her back.  Caroline looked directly at me and said "Momma."  I looked at Kristen--I was so overwhelmed....I loudly told Caroline how happy she made me...Apparently I was too loud because Caroline ran away from me.  But Caroline said "Momma."

The joy that comes with her sweet voice uttering "Momma" with perfect clarity is like no joy I have ever felt.  And perhaps the joy is amplified because it came just as I was emerging from a dark patch.  I write to remind myself how far we have come....this is not just Caroline's journey...it is our family's journey, we share her challenges and her accomplishments.  And despite how much I try to remind myself how much I have grown as a parent, spouse, professional and a person since welcoming Caroline in this world there are still tough days--tough days made harder by depression. But today, I celebrate Caroline's new word, "Momma" and I thank Caroline for giving me the last push I needed to step out of the darkness and back into my life.

Remember How Far You Come

There are days that I would rather not engage with the physical world but rather just watch the digital world float past me. On these days, I am most comfortable nestled in my bed, alone, behind a closed door.  I don't mind the sounds of my family enjoying life, they are somewhat comforting-but I have no desire to join in their fun. Despite the guilt, I cannot force myself to clean the house, fill out the mountain of paperwork, or do any of the other million things that are on my list. During the week,  I drag myself down to my office log on to my computer and force myself to respond to emails, write documents, and continue to stumble through my professional day.

I felt the perfect storm brewing so I went to my doctor and began anti-depressants and anti-anxiety medications at the beginning of the summer.  I started the meds just in time, my mood and energy level plummeted just as my stress level soared.  Perhaps the chemical imbalance is responsible for some level of clairvoyance.

I have a well established history with depression and anxiety.  At times, when I don't have the energy to move, I wonder if the depression is caused by the many challenges in my life or if the challenges in my life seem greater because of the depression.  When the depression sets in despite my best efforts the only thing I can see in the injustice that surrounds me. 

I laugh at my life whenever possible, I try to embrace the joy and wonder that surrounds me.  But there are days, days like today, when I can no longer muster the strength to try and convince myself that I am just tired or that I will get a break soon.  I am physically and emotionally exhausted.  Many activities I used to find enjoyable are now a chore. 

But You Don’t Like to Be Touched

I tried to choke back tears but when that was no longer possible, I sobbed quietly to myself.  In a matter of seconds John paused the movie. “What’s wrong?” he inquired.  We were watching “Temple Grandin” which chronicles the life of its namesake “an autistic woman who became an unlikely hero to America’s cattle industry—and to autistic people everywhere,” as explained by the official movie synopsis.  We had just watched a scene where Temple’s mother was leaving her at a boarding school, when Temple’s mother tried to hug her Temple shied away and resisted. “It makes me sad and scared to think of a day when Caroline might not find comfort in a hug,” I managed between sobs.  And John’s response demonstrates one of the reasons I love him so, “Kacie, you don’t like to be touched.” Hmmm, he makes a good point, an obvious point.  I proceed to amend my previous statement, “Point well made. I guess what I am feeling is twofold: First, I don’t want Caroline to be in a constant state of angst about whether people are going to touch her; and second, self-interest, rightly understood, I want Caroline to find comfort in my hugs.”

This one scene led me down a path of introspective self-discovery that forced to the surface a new awareness that I had been suppressing.  I hoped that by exploring my intense desire for people to respect my personal space (with few notable exceptions) and the equally strong and antagonistic desire for Caroline to be comforted by my touch I would not only grow as a person but I would be better suited to provide Caroline comfort in a way that was meaningful to her.

Caroline currently loves when I hug her because I make hugging a sensory filled experience that involves throwing her in the air or swinging her between my legs. My fear of Caroline not wanting to be hugged or touched is rooted in the understanding that, “there is no single behavior that is always typical of autism and no behavior that would automatically exclude an individual child from a diagnosis of autism” but that many autistic people do not like to be touched. This fear is compounded by the fact that I don’t recall a time when Caroline has initiated or requested a hug. The best way I have learned to comfort Caroline is by distracting with her with a song or one of our many inside jokes.

When my ladies are hurt or sick my heart aches—with Vivian a hug or snuggling is a reciprocated act offering mutual comfort—this is not the case with Caroline. People with autism spend a lot of time in their own world, one of the diagnostic criteria deals with a decreased or inability to share joy with others.  Despite Caroline’s decreased ability to share her joy, she brings a tremendous amount of joy to everyone in her life. Caroline is infectiously happy, I can’t help but to be happy when she is around. I have decided that Caroline does not have a decreased ability to share joy but rather she just shares it differently. And if Caroline shares her joy by being infectiously happy, I should be able to find comfort in by ability to calm her regardless of means.

Do you think it is selfish that I am concerned that one day Caroline will not want to be hugged, especially given all that she deals with on a daily basis?  When I proactively worry about things like this, I feel like I am not only being selfish, but I am doing a disservice to Caroline by stressing about a problem that may never exist.

It Takes a Village

Becoming a parent is a self-affirming experience. When I became a parent not only did my priorities become apparent but I strived  to become the best possible version of myself. I believe this process was aptly described by Hillary Clinton in It Takes a Village, “Parenthood has the power to redefine every aspect of life - marriage, work, relationships with family and friends. Those helpless bundles of power and promise that come into our world show us our true selves- who we are, who we are not, who we wish we could be.” However, when one becomes the parent of a special needs child there is a parallel transformational process that occurs. For me this process, involved accepting that Caroline was medically involved and has special needs, learning that Caroline was "different but not less," and trusting myself and others enough to ask for help.

Asking for help has always been a challenge for me but during some of the darker moments in my personal life I have been overwhelmed by the support and comfort offered from others.  It is not my first inclination to ask for help but I have learned that the collective capacity of my village far surpasses my individual capacity, especially during a difficult situation.  When I learned that the insurance policy offered by employer specifically excluded any services under the diagnosis code of Autism, I was red with fury. But as a parent of a child on the spectrum I did not have the luxury to wallow in my fury instead I had to focus on solutions that would provide care for my daughter now.  I decided that I would use crowd-sourcing to try and raise the funds. I discussed this idea with my husband, John.  "If you think that is the best way to provide Caroline with the therapy she needs, let's do it." But just as happened when I started this blog his reaction was the same, "I did not realize how much of ourselves we are sharing with others." John is a very private person and when we met I was, too. But overtime I have found comfort in sharing my story my others just as I found comfort in learning how others navigate challenging life situations.  John understands the therapeutic value of this to me and therefore is willing to give up a little bit of privacy for may sanity.

When we decided we would use crowdfunding, Giveforward to raising funds for Caroline's therapy, we knew the fundraiser had to be short because we needed the funds to start the therapy. Two weeks. We figured a short break from therapy would not be the end of the world and if we raised for funds for two weeks, we would receive the funds within a month and could start therapy soon after.  I cannot tell you how overwhelmed we were by the kind and generous support of our village. So many people donated funds and even more helped us spread the word about Caroline's fund.  Not only will the funds raised help provide Caroline with the much needed therapy but it also reminded me of the kindness and generosity that surrounds me on a daily basis.  It also demonstrated what a lasting impacting John has had on the life of so many of his students--their kinds words brought me to tears. I know my husband is an amazing man but to see what he means to so many students warmed my heart.  I honestly do not think there are words to express how humbled and thankful John and I are for the outpouring of support.

And while, I have spent a lot of time speaking about the support we received during our recent fundraiser, I want to be clear our village is much larger.  To Chris, Michelle, Dawn, and my parents all who dropped everything on at least one occasion to watch Vivian while we rushed Caroline to the hospital; to my dad for spending nearly 7 months in Chicago caring for Caroline because no schools we could afford would accept a child with a feeding tube, to Lizzie for being a wonderful and amazing date night babysitter for our ladies, to all the therapists who have helped Caroline develop the skills she needs to manage or overcome some of her challenges and to those same therapists for providing me with the encouragement that I needed during some of the difficult days; to Montessori Learning Center of Edison Park for not only accepting Caroline as a student but as a person and for working with us to provide Caroline with an education that was appropriate for her; Caroline's first teacher who knew how to challenge Caroline with overwhelming her; to John's mom for caring for the ladies during two cross country moves and for always looking for ways to be helpful, to Kristen for being the MOST amazing nanny, teacher, therapist, friend, and new member of our family (our Howie); and again to Dawn--for everything. I know I have missed many, many people.  But please know we appreciate everyone who has helped us along the way. And to those who I have been short with please accept my apologizes, l try every day to give everyone the consideration I would like but some days I fall short.

So I started with thoughts about parenting from Hillary Clinton and I would like to end with thoughts about life and seeing the good in every situation from Mr. Rogers, "When I was a boy and I would see scary things in the news, my mother would say to me, "Look for the helpers. You will always find people who are helping." To this day, especially in times of "disaster," I remember my mother's words and I am always comforted by realizing that there are still so many helpers – so many caring people in this world." Thank you all the helpers.

Thank you to everyone who is part of our village.

Thank you, Cigna

I just received confirmation from our good friend, Tim, at Cigna that ALL of Caroline's speech therapy needs will be covered on an in-network basis for the balance of the calendar year, with no additional requirements! Caroline is pleased with the result of my efforts!!

Here is the email from, Tim!

Good Morning Kacie,

I received an update this morning for Caroline's speech therapy. Your employer has approved all speech therapy services to be processed in-network at billed charges for Caroline effective August 15, 2013 until December 2014. You can go ahead and make an appointment with a speech therapist of your choice! I have documented all of the information under Caroline's account. I will be leaving the office this morning until 11:00 p.m. ET, but if you have any additional questions or concerns, please feel free to e-mail me and I will get back to you as soon as I return. Have a great day!

Tim

I texted Tim's email to John and with a note that says, "why you love me." John responded, "I love Kacie and Tim a little."

I am over the moon happy, right now!!!

A Successful Mother

Motherhood has been one of the most enlightening experiences of my life. The time I spend  trying to prevent the ladies from picking up my bad habits is substantial. Yes, I am working I am actually getting rid of the bad habits myself; but sometimes, it is just easier to hide the Peanut Butter M&Ms in my office or to turn up the radio in traffic so they can't hear the my choice of words. In addition to pointing out my many faults motherhood has also taught me many lessons. Perhaps, the most important being that happiness is not found it is created and it comes in many forms.  Caroline had and has her fair share of challenges but she is happy and content.  I don't think I have met anyone with a better disposition than Caroline. Her greatest joy in the world is looking at and talking about frogs, for the most part if someone takes something from her she walks away, and she diffuses intense situations with laughter.  Is Caroline happy because her autism prevents her from caring what other people think or is it because she creates her own happiness and invites others to share it? I like to think it is the latter.

Tonight I spent a few moments thinking about what would make me a successful mother.  I decided I would be consider myself a successful mother, if my ladies:

• Understood that happiness is not found, it is created,


• Know when to stand their ground and when to back down,


• Realize the wisdom that comes with saying, "I don't know",


• Act with kindness and understanding-for you never know what someone else is dealing with,


• Value and act with intention,


• Have a firm handshake and warm smile because a first impression only happens once,


• Embrace the love of learning more than the joy of "being right",


• Can change a tire but know when it is better to call AAA,


• Value friendships, and


• Know how to approach a stressful situation with logic and grace.

What would it take for you to consider yourself a successful parent?

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.

Overcoming My Biggest Fear

Today, on Caroline's third birthday I am overwhelmed with emotion as I look back on all that we have been through and all that she has accomplished. My biggest fear entering motherhood was raising a child with special needs. Entering parenthood, I had already felt the pain of losing a child when my baby sister, Britney, passed away at the tender age of 9 and half (she was 18 years my junior). Thus, I became a mother already knowing and understanding that each day with any child I welcomed into this world was a gift and that tomorrow is not promised.  And to deal with the immense weight of that reality, I worked very hard to create an environment that would allow my children to thrive but also to experience life to the fullest at a young age.  For me the fear of raising a special needs child was two fold: I did not want to see my child live a life filled with pain and discomfort; and I did not know how to create an environment that allowed Caroline to experience life to the fullest given her medical and developmental challenges.

In a previous blog, I explained the challenges of bonding with Caroline as the pain of losing Brit was still so fresh.  And for that reason, it took me awhile to get to really know, Caroline. But now that I know Caroline and I see all that she is capable of I know how to create environment that allows her to thrive and makes her happy.  Caroline has an infectiously happy and curious personality.  Her lack of boundaries allows her to wander in the hearts of many. She is tiny but mighty; calm but excitable; distant but loving; and intense yet passive.  Raising child filled with these contradictions is both rewarding and challenging.  I have realized that by embracing Caroline's passions and following her lead, I can not only provide her the tools she needs to thrive but also the experiences that make her happy.

[caption id="attachment_941" align="alignleft" width="300"] Caroline at the pet store to see frogs as part of her birthday celebration.[/caption]

Today, on Caroline's 3rd birthday I realized that big party was not the appropriate way to celebrate.  John and I spent a lot of time thinking about what Caroline was interested in lately and crafted a weekend around her interests.  Caroline LOVES pizza and garlic bread so we went to pizza place for lunch; we bought her a toy frog that sings and spits water for the bath and allowed her to take an extra long bath, we went to the pet store to look at frogs (her newest obsession) and have plans to go swimming (Caroline has always loved to swim) and to go see a movie (Caroline loves popcorn, music and the bright colors in movies--my little sensory junkie).

Caroline has helped me to not only overcome my biggest fear of parenting a medically involved child with special needs but has showed me how rewarding it can be.  She has taught me that the simple pleasures in life should not be overlooked and just because today is a bad day doesn't mean tomorrow has to be. Caroline has also taught me the importance of asking for help--I am so thankful to the many amazing therapists, teachers and doctors who have helped Caroline overcome so many challenges and achieve so much. Self interest, rightly understood, I am also thankful to these same individuals for offering me perspective, a shoulder to cry on, or a friendly ear as needed.   I understand it takes a village and I am so thankfully for the village that has contributed to and shares Caroline's successes. And of course, when considering all those who have contributed to Caroline's success and growth I cannot, thank my husband, John, enough for always seeing Caroline as perfect; Vivian for being an understanding big sister, my dad for spending months taking care of Caroline and demonstrating a tenderness and patience I did not know he was capable of--there have of course, been many others who share Caroline's success and who have supported our family during the dark times and to each of you, I am forever thankful.

Happy 3rd Birthday, Sweet Caroline--I can't wait to see what you will accomplish this year!

Cigna's Response Highlights the Need for Insurance Reform

After writing my last entry, I tweeted it and shared across several social platforms.  Via Twitter, Tim from Cigna requested that I send him an email so he could further look into my issue. At least Cigna was responsive via social media, I thought to myself as I drafted a quick but polite email to Tim.

As you will see from Tim's response below, he told me what the representative on the phone already told me--so in fact the only thing he did was waste more of my time. I understand he was doing his job and following the standard operating procedures established by executives whose bonuses could pay for Caroline's therapy for a year, but still I am frustrated. 

Tim's response:

Hello Kacie,

Thank you for taking to the time to e-mail me your information. I was able to research your account this evening and unfortunately I do have some bad news. Since you are an OAP member with in and out of network benefits we are unable to complete a network adequacy appeal. I know this is not the answer you were looking for and I tried to see if there was anything I could do internally, however this is a standard operating procedure for PPO and OAP plans in relation to ancillary services. I am truly sorry for the inconvenience this has caused you and your family and I hope that in the future we can establish a broader network of speech therapist in your area. I know that I wasn't able to give you the answers you were looking for with this issue, but if there is anything that I can do to help you in the future please feel free to email me. I wish you and Caroline the best of luck and hope you enjoy the rest of your week.

Tim

Please like this post if you are frustrated with insurance companies.

Cue the Violins

I took today off of work, I was hoping to get caught up on scheduling a lot of Caroline's appointments. Instead I felt guilty about falling behind at work and spent the day fighting with Cigna.  I am MAD, fighting mad--life is not supposed to be this hard.  I try very hard to be helpful to people in every aspect of my life but I feel like that kindness is rarely returned. I know cue the violins---I am totally feeling sorry for myself.

Today, I got a call back from the office of a speech therapist who I would like to work with Caroline.  She explained how my benefits would work for both in network and out of network coverage. It boils down to in network--I pay $0 for up to 100 visits, out of network, I have to pay 40% of each visit which comes out a little over $1,100 a month--this is only for speech therapy.  I called Cigna to find out if there were any in network providers in my area. Turns out there are none, one is listed but it is a wrong number.  So the customer service representative explained to me that I could apply for a network exemption because there are no speech therapists contracted with Cigna in a 40 mile radius--great.  So I call the therapist back and get the necessary information. I call Cigna back, explain to the customer service rep what I am trying to do, she says no problem and transfers me to pre-authorization.  Well, the woman in pre-authorization explains to me that network exemptions are only allowed for specialists, speech therapy is considered an ancillary service.  She actually said, "I don't want to sound rude but you could drive over 40 miles or use your out of network benefit. You know people with an HMO don't have the option of going out of network."

Wow! Just wow! I did not know it was possible to literally blow my top---if I could reached through the phone... Instead I inhaled and loudly asked,  "Do you know how much I pay a month in premiums, much, much more than someone with an HMO. Also if you look at my record you will see that I met my out of pocket max some time ago so you can surmise the cost of my annual medical bills. And the very fact that you would suggest I could drive 40+ miles, one way, at least twice a week, when my daughter needs to receive three forms of therapy on a weekly basis and is currently followed by 10+ specialists shows how callous you and Cigna are. I wonder how do you sleep at night knowing that you work for a company that crafts policies to limit payment of medically necessary services to medically involved children with disabilities because you know their parents don't have the time to fight the system...no really how do you sleep at night?"

She did not take kindly to my question and just kept asking if there was anything else she could do to help me. I made a few suggestions including sending a donation to help pay for my daughter's medically necessary speech therapy.  She did not ask for my current address so I am not really holding my breath for her donation.

I am also gearing up for the second installment of Caroline's IEP meeting.  We have several appointments scheduled with specialists to address a myriad of issues ranging from possible asthma to ruling out vision issues.  There are not enough hours in the day to coordinate Caroline's care, work full-time, and be a wife and mother.   My hair is falling out and for the first time in my life I have high blood pressure. Having said that, I have to say that despite the stress for the first time in a long time, I am happy. Thank you, Lexapro. I am realist--I know when I need the help of chemistry to get by.  I am trying so hard to find balance and to roll with the punches but my body knows how stressed I am, despite my efforts to convince it otherwise.

So today, I am feeling sorry for myself--because I have to spend so much time fighting for the care Caroline so desperately needs--time that I would much rather spend with her, because the money I work so hard for cannot go for a down payment on house but rather will be spent on therapies that insurance should pay for, because I am always so tired, because I don't have time for real therapy so I over-share via my blog, and because I am mentally, physically, and emotionally exhausted.  Tomorrow, I will put the violins away and rally.

How do you keep going? Where do you find the strength to keep fighting?

--written as I pack for a business trip to Georgia.

A Day of Celebration Becomes a Day of Remembrance

I nearly remember when August 6^th was a day of celebration rather than a day of remembrance.  It is hard to believe it has been the latter for five years.  Britney would be celebrating her 15^th birthday today.  Sometimes, I try to think about what she would be interested and how much she would have grown and matured in the five year since she was taken from us—but mostly, I remember her just how she was.

Brit and I had a special bond, one that was not easily described.  I cut her umbilical cord, I helped her learn how to ride a two-wheeler and I held her hand as she left this world.  Sandwiched in between, Brit taught me about the importance of life.  Brit loved like she had never been hurt, danced like no one was watching, and tried until she got it right.  Her insight and perspective was spot-on. I like to think that the way Brit led her life was a reminder that, that which we value in childhood is that which we should value throughout our life.

Today, on what would have been Brit’s 15^th birthday, instead of having a huge celebration- I will gather with my family after work to remember Brit, privately. But as Brit loved to be the center of attention and to know that people were talking about her-I will share this post in her memory. If you remember Brit, I encourage you to talk about her today.  One of the hardest things about losing Brit is the fear that others will forget her so please don’t let my fear become a reality—talk about her, keep Brit’s memory alive. 

In loving memory of Britney Nicole Wielgus-you will forever be my favorite. Rest in peace, my love.

The Good Choice

I consider myself an idealist who is saddled by realism; however, there are times when I feel like realism has beaten any lurking idealism into submission.  I hope the ladies are able to develop and maintain a healthy balance between idealism and realism.

John and I believe it is very important to instill the ladies with strong sense of self.  We want them to be comfortable in their own skin, not overly concerned about their appearance, to be independent, have a strong moral code, and to develop a strong work ethic.  As such, we do not have Disney Princesses or Barbies in our house.  We believe the lessons these icons message are in direct opposition to our values. Of course, Vivian knows who all the Disney Princesses are and will even tell you Ariel is her favorite.  Ariel is perhaps the most offensive of the Disney Princesses to me. Ariel cannot talk until her prince kisses her and don’t even get me started about the symbolism behind the whole mermaid thing.  John and I have been unwavering when it comes to princesses so much so that frequently at the store, Vivian will parrot back to me, “In our house we don’t do princesses.”

All that changed this weekend. I have been traveling a lot and Vivian has been having a rough time at her current school thus the dreaded “mommy guilt” is rearing its ugly head.  John took Vivian to a new swim school to get a swim assessment; she is getting ready to start lessons.  She did awesome!  John reported that Vivian went with the coach who she just met and did everything she was asked.  However, when they were walking out she spotted a mermaid wearing a purple outfit (Vivian’s favorite colors are pink and purple).  She immediately grabbed the mermaid and when John said no, she started to scream and cry.  John told her she would never get anything from us by acting that way and they left without the mermaid-Vivian was hysterical (bear in mind, she has a flare for the dramatic).

When John called to tell me how the swim assessment went I could hear Vivian crying.  John quickly brought me up to speed. I suggested maybe we back off the mermaid rule. In my defense, I will say that I misheard John and I thought the coach had given Vivian the mermaid and John would not allow her to accept the gift, which greatly influenced my initial reaction.  John put me on speaker so I could speak with the still hysterical Vivian about what happened.

Me: Vivian, what’s wrong?

Vivian: I saw a purple mermaid that I really wanted----and Daddy said no.

Me: What did you do when Daddy said no?

Vivian: I cried and screamed.

Me: Is that how we get what we want?

Vivian: No, but I really want it.

Me: Vivian, I am going to skip the headline. I am going to try to help you get it. So listen to me.

Vivian: Okay.

Me: Tell, Daddy that you are sorry for making a bad choice and for screaming and crying.

Vivian: I am sorry for making a bad choice and crying.

Me: Tell Daddy you understand that crying is not the way to get what you want.

Vivian: I know I don’t get what I want by crying, I am sorry.

Me: Tell Daddy why you want the mermaid so bad and ask if you can have the mermaid if you apologize to the lady inside for making a bad choice and crying.

Vivian: I am sorry; I made a bad choice and cried when you said no.  The mermaid is purple and I really want her. If I say I am sorry for making a choice to the lady, can I have the mermaid?

John: Vivian, can you say you are sorry without crying?

Vivian: Yes.

John shared that he was not sure this was a great idea but he was willing to support me undermining him (I am not sure if I would have been as kind if the shoe were on the other foot. I think he understands the whole “mommy guilt” thing).  They hung-up with me and John continued to talk to Vivian.  Apparently, when she first asked for the mermaid, John suggested she could earn it. Instead of allowance, Vivian earns something she wants by making “good choices.”  Apparently, Vivian was listening.  Because when John started talking to her, she said “I shouldn’t get the mermaid today. I should earn it.”

John and Vivian returned to the store. Apparently, the woman behind the counter could barely look at Vivian because she could tell that Vivian was coming to apologize for the scene she had caused.  With a little help, Vivian was able to apologize for screaming and explained she was going to earn the mermaid.  Much to the credit of the lady working, she picked up the mermaid and said, “We will hold her up here for you, so when you come back it is still here.” This made Vivian very happy.

John did a great job of reinforcing was a great choice Vivian made so much so that she was bursting with pride when she called to tell me about her “good choice.”

Vivian and I both learned a valuable lesson from this experience.  Vivian learned the great sense of pride that can come from making the right choice and the value of earning something that is truly desired.  I learned that there are many ways we can instill values in our daughters and sometimes by changing our tactics we can seize an amazing opportunity to demonstrate the values we want them to develop.

Mommy pride!

Sisters

[caption id="attachment_895" align="alignright" width="224"] Vivian "teaching" Caroline how to walk[/caption]

I often wonder what impact having Caroline as a sister will have on Vivian.  Some who know both of my of ladies might be wondering why I don't worry about the impact having Vivian as a sister will have on Caroline. And I do, believe me, I do.

I have talked to other parents who have a typically developing child and a child with special needs and many say the typically developing child is very compassionate, responsible, and understanding.  I have also read studies that cite children who grow up with a special needs sibling are more likely to be overachievers and to have issues with guilt because they watch their sibling struggle with tasks that they come by naturally.

I want both of my ladies to have the opportunity to develop as individuals but to learn from each other along the way.  Vivian is very bossy and a know-it-all but I hope that someday she realizes that while there are many lessons she can teach Caroline, there are also many lessons she can learn from her.  Vivian delights in telling Caroline "criss-cross applesauce," as she places a puzzle in front of her.  When Vivian decides to engage with Caroline she has a captive audience. Vivian is one of Caroline's most effective teachers.  From Caroline, Vivian could learn humility, flexibility, and patience. (To be fair, I could probably learn the same lessons from Caroline.)

I did some deep investigating reporting for today's post.  I interviewed Vivian about what is like having Caroline as a sister.

Me: Vivian, what do you like most about Caroline?

Vivian: When she plays with me.

Me: What don't like you about Caroline?

Vivian: When she hits me, she should not hit me.

Me: What do you like to do with Caroline?

Vivian: I like to teach her things. (This is not surprising because Vivian is bossy and comes for a long line of educator's on her father's side.)

Me: Does Caroline talk?

Vivian: No.

Me: Does Caroline want to talk?

Vivian: Yes

Me: How does Caroline tell us what she wants?

Vivian: Please (as she does the sign for please).

Me: Vivian, is Caroline different?

Vivian: YES!

Me: How?

Vivian: She has curly hair.

After this interview, I realized at the end of the day Vivian sees Caroline as her sister.  Vivian knows that Caroline cannot talk but wants to, but to Vivian it is not a big deal because for the most part Caroline and Vivian are able to communicate without words.  Like any sister, Vivian doesn't like when Caroline hits her. And the biggest difference that Vivian recognizes between herself and Caroline is the difference in their hair.  Vivian doesn't think it is a big deal that Caroline has a feeding tube or that she has a chewy tube attached to her shirt--her curly hair is what makes her different.

So tonight, I will sleep easy knowing that my ladies are sisters, first and foremost. And despite their difference they delight in being with each other-until they don't, which is perfectly normal.

Mommy Guilt

I am not the type of person who cannot , not work outside the home--I tried once, I ended up being named Communications Director of the network of charter schools where my husband was employed. Work is my zen place. At work, I have the opportunity to create beautiful opportunities for individuals to engage with meaningful information that impacts lives.   I am challenged on a daily basis in a way that helps me grow as a person. And while I take my career very seriously at the end of the day it is a job. The moment I realized it is just job, is the moment it became an opportunity to make meaningful decisions that did not have life or death consequences attached.

I think I am good mom-not a great a mom. I am concerned, involved, and mostly available.  The mostly available part is somewhat ironic as when the topic of having children was discussed with my husband (before marriage) he said, "They never go away, they are always there, it worries me." I tried to calm his fears by explaining that is why there are two of us.  I will admit more often than not, in recent months, I am the one more likely to sneak moments to myself or little breaks.

When I started working in my current position, I started working crazy hours. I liked what I did and the company culture was intense. It took me awhile to realize that I was frequently the last to leave in the evening and that I was working at home almost every night. When I finally asked myself why I was working like this---I realized the answer was complicated.

• I wanted to be viewed as a professional not as a working mom or as a working mom of a special needs child. This was hard to pull off because I talked about my kids at work but I thought that I could talk about my kids because I was getting so much accomplished.


• I also felt like if I worked hard enough I would finally get compensated in a manner that would allow to adequately provide for my family, especially Caroline.


• And finally, I felt like work was an environment that was easier to control than my personal life--I needed a place where I could feel successful.

I will be honest at first business travel was a welcomed break from the responsibilities of being at home and an opportunity to be fully engaged with work well into the evening hours. However, now as the travel is weekly, I find myself seeking out creative ways to stay engaged with the daily activities of John and the ladies'.  We Facetime, as much as possible, exchange pictures (in the vein of where in the world is Mommy), and plan for quality time when I get home.  I also still coordinate all of Caroline's care from wherever I am, so if a therapist needs to reschedule I handle it-so John doesn't have to try and figure out the whole schedule when I am gone.

I am a mom and just like most every mom I know, I suffer from the dreaded "mommy guilt". Travel isn't the only reason for "mommy guilt" there is also missed activities, not spending enough one on one time with each of the ladies,  my short temper (especially when there is whining involved), frequently forgetting Friday is Show and Tell Day,  and my lack of  interest in watching "Jake and the Neverland Pirates." But at the end of the day after I repress all that guilt, I think that it is important for my daughters to see their mom as a professional, who has commitments beyond them.  I am happier when I am fully engaged and being challenged professionally, which makes me a better mom and wife. My career forces me to disengage from Caroline's care for bits of time, it offers a mental break from many stressors. This is not to say my career is stress free but professional stress is so different.

My family supports my career because it is important to me. Just as I supported John's career by moving to Texas, and as we support Vivian by providing her opportunities to engage in activities (swimming, dancing, piano), and for Caroline when she expresses an interest (such as going outside) we drop everything to make it happen because she so rarely makes a request.  The headline being, as a family we support each other's priorities.  Self interest rightly understood, when the members of our family are happy it is easier for us to be happy :).

If you are a traveling parent how do you find balance? How do you deal with parental guilt?

--written from Atlanta, GA.

Fear Mongering and Profiteering, Amplified

[caption id="attachment_884" align="alignleft" width="220"] Jenny McCarthy speaking at the 2008 Ante Up For Autism benefit[/caption]

Giving Jenny McCarthy a platform to peddle her predatory, profit-seeking, and fear mongering thoughts about autism and parenting is nothing less than irresponsible, if not negligent. I believe in free speech and I respect her right to share her ideas. However, McCarthy's views are based on discredited science and prey on the hopes and pick the pocket of parents of children with special needs. Allowing her to co-host the The View alongside respected journalists including Barbara Walters provides a platform that both legitimizes and amplifies McCarthy's fear mongering messages about vaccinations and autism. I see inviting McCarthy to co-host The View, akin to giving her a her a megaphone to yell "fire" in front of a crowded movie theater.

I have spent the last three years trying to find answers to the following questions:

• Is there something wrong with Caroline. Yes


• What is wrong with Caroline. Not such a a clear cut answer exists, options include: autism, failure to thrive, severe reflux, severe global development delay, ADHD, sensory processing disorder, mixed expressive language disorder, motor coordination disorder, and an array of other little unexplained medical issues.


• What caused Caroline's symptoms? There is no answer, readily available; however, scientifically backed research suggests children with Caroline's diagnoses benefit from intense therapy. So instead of wasting time looking for answers that might not exist and do not benefit Caroline, John and I focus on treatment options that will improve Caroline's quality of life. Perhaps it is best for us to not know why Caroline is autistic--I don't ask why, every time something good happens--so it follows that I should not ask why every time life presents a challenge.

Knowing that there was something wrong with Caroline's development coupled with regular medical complications was emotional and taxing. I am not going to lie. I cried, I was angry, I was mean, and I battle(d) depression and guilt. I did not want to raise a child with special needs. And there was a time that I mourned for the "normal" child I thought I would have--but I am getting to place where I realize that Caroline would not be the same person absent her diagnosis (the associated challenges, help shape her personality).

At every doctor appointment until May of this year, I would ask: is this a delay or a disability. I also went a tireless search for a diagnosis so we could provide Caroline with the appropriate support to aid her development. I cannot tell you how many doctors said something along the lines of, "There is something definitely wrong but we don't know what. Right now, the best thing to do is treat the symptoms." I have had doctors tell me that we should reduce tube feedings because Caroline may become too heavy to carry, suggesting that she would never walk. I have also had doctors tell me that we need to plan for Caroline's care after we pass away. These were not easy discussions for me or for the doctor. Some of the doctors were wrong but some of them were offering me much needed perspective and advice.

No two autistic children are the same - that is why it called ASD or Autism Spectrum Disorder, because there is a spectrum of variation. However, there are two main categories 1.) children who are delayed from birth or 2.) children who are developing normally and then around 18 months begin to regress. It is parents of kids in the second category who are more likely to attribute their child's autism to vaccinations. I have read article, after article discrediting the fraudulent and misleading study that planted this venomous seed in the minds of many parents who just wanted to know why-or have a direction to point their anger, frustration, and grief . Below is a excerpt from one such article:

"The venerable British medical journal The Lancet has retracted a 1998 study suggesting a link between autism and childhood vaccination with the measles-mumps-rubella MMR vaccine.

The Lancet tells WebMD that it has retracted "10 or 15" studies in its 186-year history. The retraction follows the finding of the U.K. General Medical Council (GMC) that says study leader Andrew Wakefield, MD, and two colleagues acted "dishonestly" and "irresponsibly" in conducting their research.

The Lancet specifically refers to claims made in the paper that the 12 children in the study were consecutive patients that appeared for treatment, when the GMC found that several had been selected especially for the study. The paper also claimed that the study was approved by the appropriate ethics committee, when the GMC found it had not been.

"We fully retract this paper from the published record," The Lancet editors say in a news release.

The retraction means the study will no longer be considered an official part of the scientific literature.

Jenny McCarthy is worth an estimated $14 million not counting the $50 million trust, Jim Carey established for her and her son, or her future earnings as a co-host of The View. McCarthy has the means to provide for her son's special needs-whatever they may be-whatever the cause may be. Many parents are not so fortunate and their limited resources and/or inability to cope with their child's diagnosis pushes them to to look for easy answers. There are no easy answers with autism. Every penny that is used to peddle, McCarthy's unsupported claims about how she "cured" her son of autism is robbing money from research about how to better understand and manage autism.

The cost of raising a child on the spectrum is astronomical. A Harvard study places the cost of caring for an autistic person over his or her lifetime at $3 million. Families shoulder much of that burden, and the limited assistance offered by government programs is constantly in jeopardy. But the first thing most parents do after hearing the words, "Your child is autistic," is seek information. I cannot tell you how many books and articles I have read about autism since May. Many families, even those who are well off, have trouble making ends meet. Costs of raising an autistic child include: extra medical costs, therapies not covered by insurance, adaptive equipment, extra caregiving expenses and so on. The biggest commonality among parents of autistic children is that they want to provide their kids with the best possible life. To do so, many turn into veracious information seekers and the misinformation peddled by McCarthy detracts parents from focusing on scientifically backed treatment options. There is a lot we don't know about autism but we do know that study conduct by Andrew Wakefield, MD was at best misleading and it is time to move the conversation forward. No one is still claiming the world is flat.

McCarthy's misinformation impacts the nature of the discussion about autism from how do we treat and manage autism to what causes autism.

In my opinion, it is irresponsible to give Jenny McCarthy a platform of this magnitude to peddle her unsubstantiated thoughts on autism. I invite your thoughts on the subject.

I Only Play A Doctor

I am quickly learning that one of the biggest challenges of having a child diagnosed with Autism is trying to figure which treatment options to try and for how long. I am not a doctor; I only play one on television and via social media. And while, I don’t actually have a medical degree I do know my daughter. And I am hoping that by following Caroline’s lead we will be able to figure out what are the right options for her.

Now, no judgment when I share what got me to this point. When Caroline went to her new pediatrician she was her normal active self and he suggested we might want to try some ADHD medications. At first, I was resistant. But when he told me that if the medicine didn't work it would be out of her system in a couple of days, the temptation of a moment of calm, got the best of me. Caroline goes nonstop from the moment she wakes up until she crashes, and she doesn't require much sleep. Well, Caroline did calm down once we started the Quillivant, but I fear too much. She has also started collecting obsessive habits, since starting the medicine, that limited her from participating in activities she generally loves. Case in point, Caroline loves to play in the water.  Her physical therapist visited her at school while her class was on the splash pad. Caroline was so focused on picking at her fingers she did not play in the water, barely engaged with her therapist (Caroline is always an active participant in therapy), and showed a decrease sense of balance.

This setback is particularly disappointing because Caroline had such a great couple of weeks: her balance was improving; she was saying more words, stringing multiple signs together, and eating a lot by mouth. Okay, who am I kidding? Everyone who knows me knows that I take every setback hard. I try to roll with the punches but it is so hard when there are so many. Like every parent, I want the best for my kids and it is so hard to see her struggle so.

Fast forward three days, Caroline became increasingly OCD--she would sit and put objects in a container for hours and would scream if we took the container away. When we took her to a follow-up doctor's appointment, Caroline spent 45 minutes wiping down the office with a Kleenex. This behavior was terrifying because we didn't know if it was a new symptom or a side effect of the meds.  We stopped the medicine because the  doctor felt the stimulant in the medication was causing the OCD behavior-thankfully, he was right.

The day after we stopped the medicine Caroline was back to her to her normal, active self. And this led to the single most terrifying moment John and I have experienced as parents.  John was cleaning the kitchen and Vivian and I headed upstairs to play with puzzles.  John thought Caroline was with me, I thought she was with John.  When John came up and realized Caroline wasn't with me, we both bounded down the stairs.  When we got to the bottom both of hearts stopped, the front door was ajar.  Caroline left.  We both ran down the street. Caroline had wandered down the street toward the neighborhood pool.  A family in a mini-van found Caroline.  When we got there, the man said "It was a close call, she was wandering in the street. You should watch your kid more closely."  I looked at the ground and swallowed hard.  Did he think I didn't know what could have happened?

I never want to experience that stomach dropping fear again and we have taken precautions. We have a latch on the front door (like at a hotel), and the door beeps whenever it is opened. However, wandering off is very common in autistic children a study conducted by Kennedy Krieger’s Interactive Autism Network, found that 49 percent of children with autism attempted to wander between the ages of 4 and 17. When this is combined with Caroline's decreased sensitivity to pain, fearless tendencies,  lack of awareness about her environment, decreased ability to communicate, and her hyperactivity her wandering is extremely dangerous.  To the family, who found Caroline, please understand we are forever grateful for the help you offered but we are also keenly aware of what was at stake--more than you can imagine.

I am not sure if we were lulled into a false sense of security by Caroline's decreased activity because of the ADHD's med or if John and I were just off our game that day.  But I learned from this experience is that we must trust our instincts as parents.  I was reluctant to try the ADHD medications but did so because the doctor focused on the possible benefits and did not spend any time talking about the possible side effects-which in Caroline's case were OCD like behaviors.  In the future, I will be doing much more research and asking even more questions before starting a new medication or therapy.

Our Vows are Stronger than Autism

John and I have dealt with our fair of stress even before walking down the aisle.  I naively thought because we had endured so much stress early in our relationship that we met our quota of big stressors. Well now, I am thinking that those early stressors provided us with the tools to better deal with the unique the challenges of raising a medically involved child on the spectrum. John and I are keenly aware of each others triggers and our thresholds.  We know what the others needs to feel supported or even to feel sane.  There is an eerie ebb and flow to our relationship that seems to allow each the opportunity to approach sanity for for small periods of time.

John and I are partners in everything we do, including parenting. John looks at both of his daughters and sees two perfect children.  I am both envious and frustrated by this. I have talked about my evolution of focusing on Caroline's delays to the ability to celebrate her successes but John has always celebrated her successes.  And as for Vivian, John finds her to be entertaining, articulate and wonderful. I too, find Vivian to be  wonderful but also remind him that she is bossy and a bit of control freak (don't know where she gets it from).   But this is just an example of how John and I balance each other.  John is the ladies' biggest fan and I am their biggest advocate. We work together to provide our ladies' the balance they need to be the versions of themselves they can be.  This takes a ton of communication and understanding of what the other's approach brings to our family.  This is not easy and we are not always able or willing to be as supportive of each as we would be if we both got full night sleep and were not both constantly stressed and worried about the other's stress level.  

A recent article by Alysia Abbott in Psychology Today discusses the impact having an autistic child can have on a marriage.  Abbott concludes that having an autistic child does not have to ruin a solid marriage.  I found that fact that this was newsworthy sad.  Since, Caroline's diagnosis I have read article after article about caregiver fatigue and the increased stress associated with raising a child on the spectrum-but the fact that a solid marriage can withstand the stress associated with raising an autistic child is a notation of publishable quality means that divorce is much more common. I  read over our wedding vows, recently, which affirm our mutual love unwavering respect.

My vows to John:

John, you are my best friend. I love you with all my heart. Since we have met our lives have been forever changed and are forever changing. We as individuals and as a couple have grown and changed. These changes are not merely attributable to the normal ebb and flow of life but rather the storm that has altered our perspective of the world. The tremendous support, love, and comfort you have provided through these difficult days has allowed the sun to begin shinning in our lives again.

We have proven to each other and to the world that we are strong enough to withstand the greatest of challenges, brave enough to admit when we are wrong, committed enough to allow our relationship to evolve on a nearly daily basis, and courageous enough to combine our families but given time even Newton (John's cat) and Stewart (Kacie's dog) have developed a special bond. For these reasons and those that have gone unsaid, I want nothing more than to share my future with you – my triumphs and my challenges, my joys and my sorrows. Together, I know we can accomplish the life we both dream of living. 

John's vows to me:

I, John, take you Kacie to be my best friend for life, my companion in sorrow and in joy, my accomplice and my support. I promise to love and take care of you when times are easy, and when times are hard. I will always rely on your fun loving spirit, your passion for your life, your honesty and your generosity. Our mutual respect and delight at being together is the foundation on which we can build a life and a family together. I will always strive to give you what is best for you and to learn from what you do best. I promise to make you chocolate, to watch chick flicks with you, and to hold you as you fall asleep.

Our vows to each other are stronger than the challenges of raising a medically involved child on the spectrum.

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.