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.