Rejection

Her dancing brown eyes, beautiful curls and playful smile make her irresistible to me. The way she sneaks into a room I have just left to see if she can find my phone and steal a couple of minutes of YouTube (almost) always make me laugh.  And her fun-loving spirit that allows her personality to overcome her inability to speak makes me wonder how anyone who meets Caroline could summarily dismiss her once they hear she has autism.

Now, I know a mother’s love hides a lot of imperfections and that Caroline can be a lot to handle but she is so much than a label and deserves to be treated as such.  I frequently explain that John, my husband, is the ladies biggest fan; in his eyes they are perfect. I am their biggest advocate.  This is an important distinction because as their biggest advocate not only do I make sure that the ladies have what they need to be successful in life, including room to fail but I also need to be aware of their shortcomings to make sure we are addressing them in an appropriate way.

One of the most trying experiences of my life thus far has been trying to arrange care for Caroline.  When she was about a year old and I first started looking for a daycare setting no one would accept her because of her feeding tube. So we had to hire a nanny.  When Caroline turned 2, the school Vivian attended agreed to accept Caroline but that was after I visited over 18 schools. The schools that would accept Caroline were WAY over my price range and would only accept her conditionally. The schools I could afford removed her from consideration from the word “feeding tube.”  Then when we moved to Texas and added the label of autism the rejection got even stronger…at least three centers told me that there are special schools for kids like Caroline.  Yes, yes there are special schools and most of them have waiting lists that are at least a year long.  But everything worked out in Texas because we found Kristen.  Now fast forward to the search in Cleveland Heights for care.

First, I posted adds on Sittercity and Care.com for a nanny. In the first ad I mentioned that Caroline has a developmental delay and her primary form of communication is sign language but failed to mention autism.  Two people removed their application as soon as they heard the word—without meeting Caroline.   Then we found a grad student who was studying social work and has a brother with Asperger’s—she seemed to get along with Caroline—I was ready to celebrate!  Not so fast. After one day, she said “Kacie, I don’t think this is going to work. I didn’t realize how stressful and physically demanding it would be to keep up Caroline.” Ummm okay, I thought has my heart simultaneously sunk to my stomach and burned with anger.   I asked her if she could finish the week so I could try to find a replacement. “I have IBS and the stress of caring for Caroline is causing a flare up—today will be my last day,” she responded.  Okay, I really don’t want someone spending time with Caroline who doesn’t want to but this left me in a very tough position. I interviewed 5 more potential candidates who I didn’t feel were a good fit or who ended up accepting other positions. I called the school that we want to enroll Caroline this fall to see if they would accept Caroline immediately—they would not—could not because of staffing. But at this point, rejection is rejection.

This rejection hurt more than not getting asked to the Homecoming dance my freshman year of high school and not getting that job I REALLY wanted combined.  As a mother, I am pretty sure it is always harder to deal with your kids’ rejection.  This rejection is particularly harsh because the admissions’ staff is not rejecting Caroline but rather their idea of Caroline which is predicated on the premise Caroline is nothing more than an autism stereotype or focusing on her feeding tube rather than her.  When you know one person with autism, you know one person with autism.

Autism is not only isolating for the person with the diagnosis but I am learning it can be very isolating for her family.  I don’t think Caroline minds the rejection in fact I am pretty sure she doesn’t but I mind.  But I do and I am fairly certain when Caroline is rejected I feel the pain enough for both of us.

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!

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.

What Does it Mean?

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

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

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

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

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

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