Explaining 'Different, Not Less' to a 4 Year Old

"Why doesn't Caroline talk like a big girl," Vivian asked at dinner the other night.  This was followed later in the evening with Vivian sharing her growing frustration with Caroline's response to excitement which includes, screaming, flapping her arms, and kicking.  I knew the day was fast approaching when Vivian would notice that Caroline was different.

I explained to 4 year old, Vivian, "Caroline is different, she has something called autism. Caroline's autism makes it difficult for her to control how loud she speaks and many of the movements her body makes.  And Caroline is starting to talk like a big girl she is saying "night, night" and we can communicate with her using sign language."

Vivian took a very thoughtful pause, I could tell something was weighing on her, "So because Caroline has awesome she doesn't have to use her inside voice..."

"No, we still ask Caroline to use her inside voice but it is much harder for Caroline to use her inside voice. You remember when you were sick a few weeks ago and you were sneezing? Well you could not stop your body from sneezing and sometimes Caroline cannot stop from screaming or flapping...does that make sense?"

"I guess but I don't like when she screams all the time."

"I know, Vivian. But we have to be understanding. I don't think Caroline likes to scream all the time."

This conversation was both a lifted weight and an added weight. I want Vivian to feel comfortable asking questions and to share her frustrations but it is also hard knowing that she is now frustrated by Caroline for things Caroline has no control over. How do I explain the concept of "different, not less," to a 4 year old?

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.

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.