My Journey to Developmental-Behavioral Pediatrics

Marisa Toomey, M.D.

If there is one thing that has been a constant in my life, it is the fact that my father does not cry. It is not that he has ever been one to grunt monosyllabic answers or greet my dates with a shotgun. He bakes, he likes independent films, and he always reminds me “your mother is the one in charge.” Still, he has never openly shed tears. Thus, when I saw him cry in public a few years ago, it sent me into a bit of a tailspin.

My parents and I were at a dance for my younger sister Devon and other adults with developmental disabilities. At the time Devon, who has Autism, was twenty-five. Unlike most of the other individuals there, Devon does not live in a group home. She still resides at my parents’ house.

She was diagnosed in the late 1980s, when the only pop culture reference was “Rainman” and when no one had a puzzle-piece, ribbon-shaped bumper sticker indicating their awareness. I cried all of the time back then. No one understood her, and everywhere we went, other children taunted “freak” and “retard” at her. My father always reminded me that all that mattered was that she was my sister and that we loved her just as she was.

He cried now, over twenty years later, because the hope he felt back then was gone. He saw a future for Devon that none of us wanted. An inevitable group home once my parents become too old to take care of her. A social circle of individuals who cannot always respond to my (highly verbal and incredibly outgoing) sister’s pleas for friendship. A lifetime of wishing she could be a part of something more.

For several years, I had begun to feel the same way. I had applied to medical school with the sole intent of becoming a developmental-behavioral pediatrician. I had always wanted to be my sister’s doctor, and I had always believed that my personal experience with Devon gave me an insight that would make me a more compassionate physician.

As the years passed, and as my sister left the organized world of special education and drifted into the nebulous territory of adult services, I began to wonder if it would all be too difficult. It was clear that Devon was unhappy leaving the friends she had made at her school and being forced into an adult services day program, where many of the people are older and non-verbal.

I began to think that I would be the worst kind of developmental-behavioral pediatrician if I had no hope for the future of the children of whom I took care. I convinced myself I should do anything but developmental-behavioral pediatrics and began to ponder what other field in pediatrics would better serve me.

These thoughts turned into a sensation of shame as I sat at the dance and watched my father hurriedly attempt to mask his tears with a mumbled “there’s something in my eye” as he rushed off to the men’s room. What had become of my dreams? I had let frustration and fear turn my goals into regrets. When did I give up on my sister…and myself?

As I sat at the dance that night, I saw my future as a clinician who was happy at work but never truly inspired. I saw my sister’s experience becoming a secret I would keep. I saw myself forever abandoning any attempt to advocate for changes for the better for individuals with developmental disabilities.

And then I looked over at my sister on the dance floor. She was with my mother, and it was very clear that she enjoyed the music as she swayed in time to it. I realized that I was the one who had decided the situation was completely hopeless. Devon still keeps dancing.

My passion never died – I just became scared for the future. It is not easy, and I am not going to pretend that this essay should have a neatly packaged ending. My father did not come back bright-eyed, and we did not all dance joyously together as a happy, hopeful family. The situation is very difficult, but that does not mean I should relinquish my goals of advocating for individuals like Devon so that the future can improve.

I cannot cure my father of his tears, but I can try to do something that helps individuals like Devon.

04-23-2015

Reprinted from AAP section on Developmental and Behavioral Pediatrics, Development and Behavioral News. www.dbpeds.org. SODBP Spring 2013 Newsletter.

Dr. Marisa Toomey will complete her Fellowship in Developmental and Behavioral Pediatrics at the Children’s Hospital of Philadelphia in June 2015.

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4 thoughts on “My Journey to Developmental-Behavioral Pediatrics

  1. Cathy Correia

    I’m writing thru a blur of tears. What a beautiful piece, Marisa! Congratulations to you and your family — with your compassion, I’m sure your future is bright.

    Reply
  2. Che smurf

    There are so many hidden families. I hope you stay with your goals because there is great need. Thank you for this article. Best wishes.

    Reply
  3. Janice Lynch

    Wow….Wonderful article. Devon is fortunate to have a family so devoted to advocating for her needs. Good luck to you in your future endeavors and good luck to the families fortunate enough to come into your practice.

    Reply
  4. kcar

    I am sobbing reading this- so thank you! I am not alone I see— I lose hope regularly and drift back for my 8 year old autistic daughter who is very verbal and longs for friends, playdates and a regular life. Her twin brother who is neurotypical helps me immensely. Mom, why hasn’t Clara had a playdate in a while. Mom just find one for her…He sort of gets she has few friends but still pushes me to ‘try’. I feel so sad when I get the no email backs or the occasional yes’s and rarely return invite. Since we moved last May not 1 girl has invited Clara to play although she is in a fully integrated 2nd grade class. As I keep trying, I keep crying. I am honest with my kids… some days I say, guys I just can’t have anyone over and my son complains but I literally can’t because it breaks Clara’s heart and I can’t do it more than once a week for him. I am trying to find hope, I am trying to find a ease to my everyday life and while our family has acceptance for Clara, she wants more! She wants to go to college, she wants to know why she was held back, she wants sleepovers, friends, movie dates and to ride her bike by herself. But the coping and safety skills are just not there. I wake up regularly at night checking on her, hoping she’s in her room and not wandering around unsafely. When parents of typical kids wonder about me, I think they’ll never know this feeling of uncertainty, angst, worry and incessant love and hope, the letdowns, the emotional coaster and the guilt that I should be doing more…I am pretty sure this post is not inspiring but it is our reality, and I am thankful for having my kids just the way they are. I am thankful I take so little for granted everyday. Some days just getting them to sleep safely and soundly is my big ‘win’, knowing I tried that day and praying and hoping for a better tommorrow… thank you~~~~~~

    Reply

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