Empowering Kids with Disabilities, Part Four: Freedom

by jphilo | May 22, 2023 | Different Dream, How-Tos, Special Needs Parenting

Empowering Kids with Disabilities, Part Four: Freedom

Empowering kids with disabilities, as the previous posts in this series have suggested, can be a challenge for caregivers. We have to make a paradigm shift from meeting all of our kids’ basic needs to equipping them to meet their own basic needs to the best of their ability.

This post explores freedom, the fourth of the basic needs identified by psychologist William Glasser in his Choice Theory. Before delving into Glasser’s definition of freedom, you may want to check out the previous posts in the series.

Part 1: Survival
Part 2: Love and Belonging
Part 3: Power and Self-Worth

This post will make more sense once you’ve read the others, so go ahead. Take your time. I’ll be here when you’re ready to go on.

You’re back. Great!

Let’s start with William Glasser’s definition of freedom. Bruce Davenport created a video series about Glasser, the choice theory he proposed, and the five basic human needs he identified. Davenport says that freedom can be defined as “the need for independence, autonomy, to have choices and to be able to take control of the direction of one’s life.”

If you’re a parent or work with kids in any capacity, you have witnessed children expressing their need for freedom. For instance…

We’ve heard two-year-olds stamp their feet and say, “I do it myself.”
We’ve heard tweens say, “Let me figure it out by myself.”
We’ve heard teenagers say, “Leave me alone. I can make my own decisions!”

I could go on, but you get the drift.

Click here to read the rest of Empowering Kids with Disabilities, Part Four: Freedom at the Key Ministry blog for parents.

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Photo by Johnny McClung on Unsplash

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.

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Help for Parents of Kids Who Experience Food Delays

Help for kids who experience food delays such as EA/TEF was nonexistent when our son was born in 1982. Imagine my surprise when I read Jennifer Forman’s guest post and discovered that, all these years later, not much has changed. At least not until Jennifer used her professional and personal experiences and a whole lot of research to create the chart below. It is the help parents of kids with food delays caused by EA/TEF and other birth conditions such as cerebral palsy that necessitate a feeding tube are going to love.

When a parent hears the words “food delay” in reference to their child, questions start swirling around in their head. As a parent you will do anything in your power to help your child to overcome this challenge. My daughter was born with esophageal atresia and a tracheoesophageal fistula (EA/TEF) type C, with her primary surgical repair done on day 2 of her life. Feeding delays are common and almost expected of children born with this condition.

When our daughter was 6 months old, our pediatrician gave us the “all clear” to introduce solid foods. While this was a terrific milestone, I was terrified. I asked countless questions and called her surgeon to see if we should proactively do a swallow study to make sure it was okay.

I met with a GI specialist, and occupational therapist to discuss the best way to approach the progression and what food would be best to start with for an EA/TEF child. To my surprise, there wasn’t much information to help EA/TEF parents. I am sharing how I approached introducing solid foods as one way form of help for parents of kids who experience food delays, including EA/TEF and many others.

Steps	TEF Age range	Examples
Thin baby food cereals & purees	6-7 months	-Rice cereal, oatmeal mixed with milk -Pureed fruits/vegetables *Thin soup/chicken broth consistency
Thicker baby food cereals & purees	7-8 months	-Rice cereal, oatmeal mixed with milk -Pureed fruits/vegetables *Chunky stew consistency
Mashed table foods	8-9 months	-Avocados, bananas, peaches, pears, squash, cooked carrots, cooked potatoes *Easily mashed with a fork
Meltable foods	9-9.5 months	-Puffs, Towne Crackers, Graham Crackers, thawed frozen pancakes/waffles, Fruit Loops, baby cookies *Foods that dissolve with spit only
Soft Cubes	10 months	-Avocado, cooked squash, cooked potatoes, vegetable soup ingredients without broth, peas, bananas *Foods that turn into puree with munching only
Soft foods	12 months	-Fruit breads, muffins, soft canned vegetables, soft pretzels, scrambled eggs, muffins, pastas, cubed lunch meat Foods that break apart in the mouth easily
Soft chewier foods	15-18 months	Mac and cheese, chicken nuggets, French fries, spaghetti, lasagna, thin lunch meats, fish sticks
Crunchy foods	18-24 months	cheerios, pretzels, Ritz Crackers, Saltine Crackers, cookies, chips, raw fruit/vegetables

*Please always consult with your child’s physician regarding appropriate food serving sizes and if this approach would be appropriate to introduce solid foods to your child*

While this schedule worked well for our daughter, it’s important for parents to understand that feeding is not a one size fits all approach. You can have a feeding roadmap that you feel good about, but setbacks are common, and they become a stressful, frustrating, deflating, and sometimes scary endeavor.

Go slow with progression and have a low threshold for reaching out to your medical team if you need guidance. Sometimes when you transition to a new step, it uncovers the need for an esophageal dilation or another procedure, which can hinder progress. When you see other children your child’s age are able to eat whatever they want, it can be difficult to maintain perspective. Help for parents of kids who experience food delays need to take their cues from their kids. Always remember that your child will dictate the timeline and that is okay.

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Jennifer Forman lives in Michigan with her husband Mike and two children, Leila and Abby. Jennifer is a medical professional who has dedicated her career to oncology patients and anticancer treatments. She is an advocate for her EA/TEF daughter who has been her inspiration.