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Recipe for Disaster with a Happy Ending : Sibling Advocacy for Our Daughter With Severe Intellectual Disabilities

I love mashed potatoes, there – I’ve said it—boring, white, fluffy, buttery mushy mashed potatoes, steaming from the pot. My eldest daughter, Jessica, also loves mountains of mashed, earthy potatoes. Jess is unable to chew functionally due to a rare chromosome deletion and developmental disabilities. When her food is not a proper consistency, it can be a Recipe for Disaster. Mashed potatoes are her ideal food.

Recipe: Mashed Potatoes

Ingredients:

  • 4 pounds of russet potatoes
  • 2-3 cloves of garlic, optional
  • 1/3 cup butter melted: salted butter optional
  • 1 cup of milk or cream (confession – I use water or vegetarian vegetable broth)
  • Salt and pepper to taste

Jessica needs assistance with all the ingredients of her daily life. Think of every single thing you do, from waking up to the moment you go to sleep, and that is what Jessica needs help managing.  

Recipe for Disaster
NO ISSUES WITH DRINKING, MOM! WELL, MAYBE SOME SPILLS 😊

Jess is 43 years old, and at age 25, she moved into a group home for individuals with developmental disabilities. Her home is two miles from our house.  The five women-friends-housemates have round-the-clock staff who assist, including preparing food with the correct texture and consistency.  Jess will choke if there are large, chewy, hard, or chunky pieces.  Her food is ground up in a processor.  As parents, my husband and I must have daily faith that her staff members pay attention to the details — all the ingredients. Food that is not prepared correctly can be a recipe for disaster.

Speaking of Recipes

  • Peel and quarter potatoes in a pot of cold salted water. (I use Imagine No-Chicken Broth instead of water to boil the potatoes.)
  • Add cloves of garlic (if using) and bring to a boil. Cook uncovered for 15 minutes or until fork-tender. Drain well.
  • Heat milk on the stovetop (or in the microwave) until warm. (I save some broth to moisten the spuds instead of milk.)
  • Add butter to the potatoes and begin mashing.
  • Pour in heated milk or the broth a little at a time while using a potato masher to reach the desired consistency.
  • Season with salt and pepper. Serve hot.

Thank You, Alex

Mashing potatoes always reminds me of the day my son, Alex, visited his sister, Jess. This was before our current house manager and staff.   Jess seemed off that day – her eyes were bulging and watery, and she was congested – yet it was more than that.  My son couldn’t put his finger on her symptoms.  He mentioned his concern to the staff, who replied that Jess was fine. Staff continued to say that Jess looked like she was getting “sudden” congestion.  Huh?

Call 911!

Alex wasn’t satisfied with that response. He called me at work and said I should go to Jessica’s house immediately. 

I arrived fifteen minutes later and knew instantly that Jess was in crisis; she was choking.  “Call 911,” I screamed to the aide.  By then, my husband, Mitch, had arrived in a separate car.  Jessica’s pulse-ox (oxygen level) was good, but her watery, bulging eyes revealed more than simple sudden congestion.  

The EMTs arrived and whisked Jess into the ambulance while Mitch and I followed in his car.

Once we arrived, Jess was quickly moved to triage, and that is when miraculously, mysteriously, magically, Jess loudly coughed and threw up a friggen, fully intact red potato.  It looked at first as if she had expelled an organ! Yes, I have photos, and no, I will not share, or you will never eat potatoes again. We still do not know why her oxygen level was good or how she was able to breathe with a solid spud stuck in her throat.

RECIPE FOR DISASTER
PHEW!!!!

Mashed

The physicians monitored Jess for a bit, and eventually, she received the all-clear from the hospital and returned home that evening, back to her smiling, humming-a-tune self. I cannot say the same for the rest of us—we were like mashed potatoes from the stress of the event and all the “what could have happened.”

We rely on family, friends, and caring, observant staff to protect from Disaster

Our son was a hero that day. His instincts rose above the staff’s dismissive reply, and we are forever grateful.  

New protocols were implemented at Jessica’s home. Jessica’s food is carefully monitored for texture and the size of the pieces before being served. This incident occurred in 2012, and we pray it will never happen again. We are fortunate to have our current house manager and staff, who are always aware of Jessica’s dietary consistency needs. And we rely on family, friends, and caring, observant staff to protect Jessica from harm. It’s a daunting thought; if I dwell too much on it, I can drive myself nuts.

Consistency and Attentiveness

Even though Jessica is in a group home, she is still our daughter and still needs intense family involvement. 

Mashed potatoes are still my favorite food, and always a reminder of how things can change in a moment. Consistency and attentiveness are essential when mashing potatoes and caring for those who cannot care for themselves.


Bon Appétit

Your Turn! Would love to hear your comments

22 thoughts on “Recipe for Disaster with a Happy Ending : Sibling Advocacy for Our Daughter With Severe Intellectual Disabilities

  1. Anonymous

    It’s trite to say, in light of the seriousness of your story, that I also enjoy mashed potatoes. I haven’t had any for quite some time but did have a baked potato on Friday night but mashed it up as always. I love my cousin!

    Reply
  2. Victoria

    Oh, dear one. An intact red potato? Sweet Jessica…oh my goodness.
    I hear you about leaning on caregivers…hoping they understand all the “ingredients” that go into making life safe. So much faith in their hands…and what a gift that Alex was near – and aware! Much love to you…and please….tell Jessica that mashed potatoes are my faves, too. When you wrote “a mountain of mashed potatoes” I smiled. Nirvana!
    xoxoxox! 🥰💕🥰

    Reply
    1. Vickie Rubin Post author

      Another thing we have in common, Vicki! A Mountain of mashed potatoes- things don’t get much better than that!!! 😉😊

      Thanks as always for your beautiful comment , encouragement and support.
      XOV

      Reply
  3. Anonymous

    Kudos to your son and you for being so observant and in acting so quickly to save Jess’ life !

    Your writing always pulls the reader in and tells an amazing yet not so simple story most people would never know about. You are educating folks about the needs of many and sensitize them to the world of those with special needs and their families in a positive, simplistic and sometimes humors manner.

    In today’s world there are public officials who only care about themselves, their own personal wealth and not the masses of the populations they claim to serve. The public needs to hear stories like this to realize the role of society and government to help those in need of supports to have a quality of life. Keep writing Vickie!

    Reply
    1. Vickie Rubin Post author

      Oh how I wish I knew who wrote this!!! it says anonymous. Thank you so much for your heartfelt and meaningful words.

      We feel fortunate now for the current manager and staff who are very cognizant of Jessica’s food texture. ❤️

      I try ,with my writing, to highlight stories that many people wouldn’t be aware of. Thank you so much for highlighting that.

      Vickie

      Reply
  4. Ab

    Thank goodness your son had the instinct and judgment to call you then call for help! 🙏 What a scary chilling ordeal that must’ve been. Glad Jess was able to breathe through it all as well. I’ll never think of a red potato the same way again!

    Reply
    1. Vickie Rubin Post author

      Thank you so much for your comment and I am truly sorry for ruining red potatoes for you and maybe others whoever read the blog. I am very thankful for the current manager and staff who are very cognizant of Jessica’s food texture. ❤️

      Reply
  5. Anonymous

    Praise God for all who showed great concerned and love for Jessica especially your son Alex who was there with Jessica at the right time. God’s timing is awesome. Thank you Jesus.

    Reply

Your Turn! Would love to hear your comments