As Told To essays allow members of our community to share their stories, often for the first time, with the help of mater mea writers. Here educator Alaina Hicks tells Tonya Abari about her experience with toilet training her son, Cannon, who is on the autism spectrum.
Please show compassion and understanding. Each parent has their own journey—this is one family’s story.
Intuition guided me to my 9-year-old son Cannon’s room in the middle of the night, but thankfully there was no sign of an accident. I gave a cursory look around the room and beneath the bed sheets—everything was fine so far.
And yet, I was still anxious.
As I tiptoed to my own room, I somehow knew I’d make my way back to Cannon’s bed before the sun’s rays peeked through my blinds.
I was paranoid. I sent Cannon to bed in a Pull-Up and two-piece pajamas. Cannon and separates? Well, those two are like coconut oil and water—they just don’t mix! There is a high likelihood that if Cannon goes to bed in two-piece jammies, we will all wake up to a glorious shit storm—from the windows to the wall, from the bedroom dresser to the doorknob.
A POOP EXPLOSION
After a more-than-decent night’s rest, my husband and I awoke to the stench of hours-old poop smeared throughout Cannon’s bedroom. No poop-free night for us!
There’s no manual for parenting a child on the spectrum…
Since these poop storms started five years ago, we’ve gotten faster at wiping up the mess. What once took us hours, now takes about 30 minutes. Still, it never gets any easier.
Cannon was diagnosed with Autism Spectrum Disorder (ASD) at two years old. There was some confusion on exactly where he fell on the spectrum because I often found myself stretching the truth during many of his assessments. I have an unyielding love for my son, but if I’m being honest, I must admit that I was initially in complete denial. When doctors inquired about Cannon’s development, I often found myself lying. Even though he showed signs of delay, I wanted to believe that Cannon was reaching developmental milestones regularly. He wasn’t.
Since Cannon was nonverbal, we didn’t even attempt to potty train him until he turned 4, and that was a disaster. After a year of trying, we decided that Cannon was just going to wear Pull-Ups until he couldn’t wear them anymore. In my mind, there was a possibility that could mean forever.
But as I pulled the poop-filled Pull-Up from Cannon’s body, I realized that he’s not going to be able to fit into these store-bought training pants much longer.
Poop explosions, although routine, were getting old. It was high time we tried toilet training again.
NO STRUGGLE, NO TRIUMPH
Functioning on the lower end of the spectrum and currently still nonverbal, Cannon is unable to articulate his wants and feelings. While we have hope that he will someday be able to communicate verbally, this makes toilet training even more difficult.
Toilet training is just a microcosm of the worry that I have in general for my autistic son. As a Black boy on the spectrum, I worry about how the inability to communicate transcends beyond the bathroom. Right now, he can’t articulate his desire to use the bathroom, but what about communicating his needs when he is in danger? Or when a teacher places him in a box because of all the tasks he can’t do instead of praising all that he can do? I believe Cannon’s abilities are limitless, but I am aware of the many limitations that others will place on him strictly based on a diagnosis.
Available resources on toilet training on the spectrum are few and far between. What works for one child is no guarantee of success for another. I didn’t know who to ask for help and the local resources on toilet training a child on the spectrum are sparse.
Thankfully, my cousin Corrin Johnson took off an entire week to come assist in the toilet training process. (Corrin is a licensed Applied Behavior Analysis (ABA) therapist who specializes in developmental delays in autistic children.) Within the week, Corrin had gotten Cannon to use the bathroom on his own using a strategy of frequent bathroom visits and a reward system using his tablet. Now, Cannon is about 90% toilet trained.
AN UNEXPECTED SURPRISE
Despite an initial hesitancy to do so, I created an Instagram page to share my son’s journey. I wanted a unique space outside of my own personal page to share our journey. I wanted a space to share not only Cannon’s experiences, but a space where others can see what it’s like for me as a Black parent of a child on the spectrum. The obstacles and the joys.
In sharing my frustrations about toilet training, I received an unexpected surprise from our village. When I posted about a recent poop explosion, I received so many compassionate responses from parents near and far. What I didn’t expect was the outpouring of love to our mailbox. In the days following the poop explosion, Cannon received over 20 pairs of one-piece pajamas. Our village wanted us to know that we were truly not in this alone.
ESSENTIAL TOILET TRAINING ON THE SPECTRUM TIPS
I’d like other moms of autistic children to know this: You are not alone, either. Toilet training on the spectrum is difficult, but it can be done. Here are some essential tips that have helped us on our journey.
1. Be kind to yourself and to your child during the process.
I’m hard on myself and there are times when I feel like I am failing as a parent. With my second child (who is now 4), I didn’t have the confidence to potty train based only on my experience with Cannon. I needed to cast away fear and doubt. I needed to be kinder to myself.
I did this first by focusing on my own self-care. That meant getting adequate sleep, staying hydrated, eating balanced meals, and blocking off time for exercise and meditation. Being kind to Alaina helps me to be kind to Cannon.
Next, I made sure to connect with other parents of children on the spectrum. I joined parent groups on social media. Attending local workshops to meet new people is golden. Face-to-face interactions with other parents of children on the spectrum allowed for incredibly meaningful exchanges. It can feel like you’re the only one navigating these processes, so just hearing about others’ experiences provides a sense of ease.
It’s also imperative to show compassion towards your child. Tell your child “I love you” often, and even on your most difficult days, reassure your child that he or she is doing a great job. I also constantly must check my voice. Using a kind tone and keeping those pouts to myself goes a long way.
2. Exercise patience.
Parenting a child on the spectrum is a beautifully, exhausting experience, and additional fortitude is necessary for toilet training. I must plan everything every day. Spontaneity––a characteristic that I used to pride myself on—no longer works, and that’s okay.
To be candid, patience is an area that I continue to work on daily. In particular, I struggle with Cannon being nonverbal because deep down, I know that he understands what I’m saying. It’s really important that Cannon doesn’t see my visibly stressed, so I’ve incorporated these daily tangible practices to help:
Find a place to breathe. I often escape to the bathroom in order to decompress. A few minutes alone provides clarity and a necessary recharge to help me continue.
Phone a friend. Talking to a family member or friend during challenging moments helps big time.
Turn up the volume. Music is calming for all of us. Sometimes it helps to turn on music, dance around, and regroup.
3. Set small, but attainable goals.
If you begin toilet training with the mindset that your child will be fully toilet trained in one day, you’re setting yourself up for failure. When toilet training Cannon for the second time, my ABA therapist cousin Corrin helped us to identify feasible micro-goals.
Our first goal was to have Cannon sit on the toilet for approximately five minutes. (We used a timer.) If he sat on the toilet and peed, then he received a reward. For each session, I held onto Cannon’s favorite toy. After he used the bathroom, I gave the toy back to him as a reward. We also incorporated this method overnight with longer stretches in between the timer. (I woke up three times at night to escort Cannon to the bathroom.)
…but it’s my duty to find the joy in every moment.
The next goal included increasing the amount of time Cannon sat on the toilet for actual bathroom use. Using the reward system, Cannon’s “dry period” expanded rapidly. He was going every 30 minutes, which gradually increased to every hour or so over the course of the week.
Finally, towards the very end of the week, we set a more ambitious goal for the following week: independent bathroom trips without any parental guidance. To do this, we knew we’d still need to verbally direct Cannon when the timer sounded.
All of these short-term goals worked and Cannon is now going to the bathroom at home without our help. Overnight, however, we are still using the timer and parental assistance. A poop-free night over the next few months is an added bonus.
Ultimately, we’d love to see Cannon using the restroom independently throughout the day and night and in any setting (and without a timer).
4. Enjoy the process.
Cannon’s toilet training development is still very much a work in progress. Even on the toughest, most poop-filled days, I am very blessed to love and grow together with our son.
I have learned over time to turn shit into roses. There’s no manual for parenting a child on the spectrum, but it’s my duty to find the joy in every moment. That means celebrating both the wins and the obstacles.
My husband and I have found that we cope better when we retell stories in a humorous way. Cannon poops on the wall? No problem. We are going to find a way to bring light to the matter.
What about Cannon’s periods of regression? I’ve learned to roll with the punches. This is my best advice to anyone toilet training a child on the spectrum: There will be ups. There will be downs. The quicker you can accept that, the better off you’ll be.