On June 9th of 2016, Liane Kupferberg Carter published Ten Commandments of Special Needs Parenting in The ProsenPeople. Each of the commandments listed in the article stirred strong emotions deep within me due to the origin of its paradigm—autism. I do not list or comment on all of the ten commandments; however, I believe they are of equal value.
Thou art the biggest expert on thine own child.
The first commandment, “Thou art the biggest expert on thine own child,” generated thoughts of all of the proactive strategies I have incorporated into our daily lives which ensure success for Hannah, my eleven-year-old with autism. Executive functioning challenges serve as an Achilles heel to many individuals with autism spectrum disorder—almost disabling them.
This manifests in Hannah with initiating a task, estimating how much time a task will take, completion of projects, inability to multi-task, transitions, processing verbal sequences, ability to verbalize emotions, and understanding others’ feedback and then incorporating it into her work. Identifying these specific struggles and incorporating tools to counteract their undeniable pitfalls has led to more independence and success for Hannah.
It all flows from the first commandment: Because I know my daughter better than anyone else, I can see what she needs and fight to get it for her.
Thou shalt not talk about thou child in front of him.
As Hannah grows older, Liane Kupferberg Carter’s third commandment, “Thou shalt not talk about thou child in front of him,” has become increasingly important to her. Just like Hannah will not tolerate others speaking uncomplimentary about anyone else in front of her, she expects the same in return.
I’ve struggled to remember and honor this because interventionists were in our home around the clock for a few years. Their sole purpose was to work on Hannah’s challenges. Communication between the therapists and me was vital, so I spoke freely about Hannah in front of her. Maybe I didn’t notice the negative impact because Hannah herself was nonverbal for so many years.
This history of needing to communicate clearly and freely with experts to get Hannah accurate diagnoses and assistance trained me to speak openly even with Hannah in the room. But that’s no excuse. I know I need to curb that. Hannah’s latest struggles seem to flow out of me in order to receive much-needed advice from others, but I understand how important it is to stop this. Completely.
I resolve not to speak about Hannah in front of Hannah so she can maintain a healthy self-confidence and self-value.
Thou shalt always remember that behavior is communication.
I learned when Hannah was only a baby that Liane Kupferberg Carter’s fourth commandment, “Thou shalt always remember that behavior is communication,” meant that if Hannah was behaving in an unexpected way, there was always a trigger or antecedent for that behavior.
Unusual behavior signals that something in her environment is bothering her a great deal. As a baby, Hannah would cry while being held because of her sensitivity to touch. As a toddler, sock seams would elicit pain while on a bigger scale, crowded children’s venues would provoke sheer meltdowns.
Currently, while on summer vacation, lack of a schedule or routine increases her anxiety. Hannah is trying to communicate by her behaviors—not misbehave. She just can’t find the words.
As parents, we need to listen and adapt their environment to best fit their needs, while providing support to help them overcome these obstacles.
Thou shalt accept that ketchup may indeed be a vegetable.
Without Liane Kupferberg Carter’s explanation, I’m not sure many outside of the autism community would understand her sixth commandment, “Thou shalt accept that ketchup may indeed be a vegetable.” Carter’s son, Mickey, has sensory issues and ketchup is the only “vegetable” he’ll eat.
Hannah, like Mickey, has oral defensiveness. She has struggled with food aversions since she was just over a year old. Textures aggravate her to no end. Her oral motor strength is also very poor. She can chew on a piece of steak for five minutes and still is not able to get it down.
After reading Carter’s commandment, I asked Hannah what it is about ketchup that causes her to add it to a number of foods it’s not typically eaten with? I was stunned when she got tears in her eyes from embarrassment and said, “Ketchup is tangy and smooth. Tangy masks the texture, and because the ketchup is smooth, I know I won’t choke.”
I have my answer.
Liane Kupferberg Carter’s book also shares the title Ketchup is my Favorite Vegetable.
Honor thy fellow autism parents.
Reflecting on the seventh commandment, “Honor thy fellow autism parents,” I agree there’s a bond formed by being able to understand one another’s journey.
Our children’s autism is always heavy on our heart; however, we don’t want anyone’s pity. So we try hard not to share our challenges and triumphs with those who wouldn’t get it.
The mothers that have already traveled in our shoes are a source of support and experience that allow us validation for our emotions—not to mention they speak our language, understanding terms like: joint attention, stimming, receptive and expressive language, parallel play, echolalia, executive functioning, and many more.
We fellow autism parents need each other.
Thou shalt take care of thyself.
Carter’s tenth and last commandment, “Thou shalt take care of thyself,” always came in last for me until a few years ago.
Like so many parents, with all of the therapies and doctors’ appointments for our children with special needs—not to mention some of us working full-time outside of the home—I always came in last. In fact, I didn’t figure in myself or my needs at all.
I was worn-out, my immune system was down, and I seemed to “catch” others’ illnesses very easily. My body was showing many signs of exhaustion. I knew I needed to start taking care of myself. I got on board and started to eat right, exercise, and allow myself more rest.
I do wish I would have done this more during Hannah’s earliest of intervention. I know I would have felt much better, but I didn’t feel there was any time.
Please be sure to open Liane Kupferberg Carter’s article and read in its entirety. I imagine you will be able to relate to her words as well as I did. Her experience aids our journey and gives words to an experience that sometimes we don’t have the time to pronounce.
If you could add to Carter’s list of commandments, what would you include? I’d be interested to know—just drop them in the comments below.
Take care,
Lori