A Ventography!

Just two moms letting off some steam




My great hope is to laugh as much as I cry.

Maya Angelou

A friend told me she recently went on a cruise with her husband and left the kids at home with their grandparents. I said, “Wow,  that sounds amazing, how was it?” She told me the cruise was great but preparing to leave almost finished her off. 

She proceeded to tell me that she wrote a manual for her parents and in laws detailing how to take care of her daughters. Most of the manual was written about her oldest daughter, Ellen. Ellen has autism. 

The manual had several tabs such as: diet, clothes, places it’s safe to visit, places to absolutely avoid, how to handle Ellen’s inability to sleep through the night, and a dictionary of “Ellen-isms” (some of her daughter’s favorite phrases and how to respond in order to avoid a melt down).

For example, she explained to the grandparents that if they dare take Ellen to Target they must follow a very specific route.  Ellen will say, “I want Little Teapot”. My friend cautioned, this does not mean go to the toy section and buy her a teapot. This means go to the section where you can listen to samples of the various children’s CDs and push #9 for “I’m a Little Teapot”. Then you must listen to the song in its entirety before moving on to your next required destination…books. 

Ellen will pick a book and get in the cart to look at it. You then have 10 minutes to get the shopping done. If you take longer than 10 minutes, somehow Ellen knows the time elapsed and a melt down will ensue. You must end your visit to Target with the purchase of a cookie from Starbucks which Ellen likes to eat in the car (not the store). That is the routine for Target. She wrote a completely different script for Walmart, Kohls, etc.

Under the “Ellen-isms” tab, my friend also explained that if the grandparents take the kids to Moe’s (a Mexican restaurant), Ellen will eat her food then declare, “I want the restaurant”. Fearful that the grandparents would try to reason with Ellen that she is already in the restaurant, my friend explained that what this actually means is that Ellen wants to eat her sister’s left overs. If they give Ellen the food, all will be well and DEFCON 1 will be averted.  

As my friend told me about her manual, I laughed so hard I had tears in my eyes. 

Later, I realized I also felt a little sad for all of us who have had to write a book just to leave for a day or two. Can we even truly enjoy a vacation if we are worried about our child’s behavior, their schedule not being followed, and the resulting consequences we’ll have to deal with when we get home?

Spontaneity is dead. 

For many of us, every day requires extreme plotting, planning, and a rigid schedule. Often, things that used to bring pleasure (e.g., shopping, eating at restaurants, going on vacation, holidays) are no longer as fun as they used to be. It’s true…nothing is ever easy but try to laugh at yourself, find the humor in it all, and know that you are not alone. 

Author: A Ventography!

A Ventography is about: 1. Encouraging and empathizing with other parents on the autism spectrum. 2. Recycling and simplifying information on the latest autism news and health and diet tips. 3. Asking thought provoking questions designed to make us rethink what we've been told about autism. 4. Helping connect the dots that show, in some cases, autism is more than a brain disorder. 5. Challenging parents to rethink what they've been told, refuse the status quo, and escape the whirlwind of confusion.

8 thoughts on “R.I.P. SPONTANEITY

  1. In the past 8 months, I have been to Ontario for 2 weeks of vacation, a last minute 50th birthday holiday to san Fran and Napa Valley that my partner planned for me and recently for a week to Mexico.
    I too thought spontaniety was dead, but actually I am at a point now whereby I can go guilt free. The routines may not be the exact same, but they do.
    It will come, I promise you. It’s taken me 18 years but some spontaniety has returned.


  2. Keep up the good work. We all need to learn more about autism.


  3. That is hilarious but so true. So so very true. Same here with our Christian and his required “pizza” (a taco bell quesadilla with no sauce) and “hot dogs” (mini corn dogs) we all have isms.


  4. This is so timely for me…thank you. I am so grateful that someone else shares my reality 🙂


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