Sensory House Adventures

If you’re a parent, you already know that being overtired or hungry can launch a child into an epic meltdown. It’s even common knowledge among non-parents. When my child is mid-meltdown in a sea of onlookers, I can simply announce “He’s hungry” or “Time for a nap” and I’ll be met with understanding faces.

In addition to hunger and tiredness, there’s another sensation that I’ve noticed that has an extreme effect on my children’s behavior that most people find surprising.

When my oldest was 2 years old, I started noticing a correlation between negative behaviors and needing to go to the bathroom. At his second birthday party, toward the end, he started hitting a friend with a Matchbox car. This was pretty out of character for him and soon it hit me – he’s past due for a trip to the bathroom.

Fast forward a few years and I noticed the same thing with my second child. Then the 3rd and 4th.

One of my kids would be in the throes of a meltdown and I couldn’t find any rhyme or reason for it. Then it would hit me. He hasn’t been to the bathroom in a while. I’d ask if he needed to go and he’d deny it. I’d finally convince him to try, and as the pee flowed out, I could see the tension and agitation in his body melt away. He’d walk out of the bathroom a different kid.

One of my children becomes particularly aggressive when his bladder is full. The same child also has night terrors that are triggered by a full bladder. Over the years, I’ve learned that the only way to stop the night terror and to get this child back to sleep is to hold him over the toilet until he pees. The agitation dissipates before my eyes, I place him back in his bed, and he drifts off to sleep like it never happened.

Why do some kids simply go to the bathroom when they feel the need arise and others appear to not recognize that sensation and let it wreak havoc on their little bodies and minds? The answer is interoception.

Interoception is one of the body’s lesser known senses that allows us to feel and recognize our internal bodily sensations, such as hunger, thirst, fullness, pain, a full bladder, body temperature, and even emotions. If your child has sensory issues in other areas -either under responds or over responds to various sensations like sounds, smells, touch, etc. – or has difficulty regulating their body or modulating their response to sensory inputs, difficulty with interoception may be another factor to consider that may be contributing to meltdowns or other challenging behaviors. One person may feel his or her bladder filling up and recognize the fullness and resulting discomfort and simply go to the bathroom to empty it; a child like mine, however, will not feel this gradual increase in bladder fullness. His body will react to the discomfort by triggering agitation and even aggression, but he won’t be able to tell where this feeling is coming from or why or what to do about it.

My kids need external cues to pick up on these body signals. I sometimes talk out loud about how my body feels and what I’m going to do about it. “I’m getting pretty hungry. It’s making me feel lightheaded and stressed. I’m going to need to eat before I lose my mind. I can help you with that after I eat.”

Or “I can see you squirming. It seems like your bladder may be full. Can you feel that?”

I’ve recently learned that there is even a book written on this very topic called Interoception: The Eighth Sensory System by Kelly Mahler, MS, OTR/L. My kids are apparently not the only ones who struggle with this! It seems to be common among those with neurodevelopmental conditions including autism, ADHD, and even anxiety and eating disorders.

Some day I’m sure they’ll be able to pick up on these feelings on their own. Right now, we’ll continue to work on it and I’m thankful to sometimes have a “quick fix” for challenging behavior in the form of a trip to the bathroom!

Today we started with a clean house (acceptably clean, at least) so the “only” thing I needed to do today was take care of four kids.

I ONLY had to make breakfast for 5 people, clean up after breakfast, and clean up the shredded cheese that the twins somehow got out of the fridge and scattered throughout the house.

I ONLY had to wash, dry, and put away three loads of laundry to keep the pile from growing out of control and overwhelming me.

I ONLY had to pour milk, pour juice, pass out string cheese, peel and slice apples, make peanut butter and jelly sandwiches (two crunchy, one creamy), make pepperoni sandwiches, clean up after lunch, wipe up 17 spills, sweep the kitchen floor three times, change diapers, wash hands, wash faces, and intercept the “potion” making with my cleaning supplies.

I ONLY had to break up fights, apply band-aids, check temperatures while praying it’s “just” a virus, wipe noses, and coach kids as they attempted unsuccessfully to blow their own noses because they only know how to breathe in and not blow out.

I ONLY had to give hot baths in epsom salts to make them feel better, rub backs, massage necks, pray there’s a simple reason for the headache, stretch muscles from head to toe while answering the question “Why are you stretching my leg if it’s my head that’s hurting?”,  hold, snuggle, rock and walk, and throw in some manual therapy and make mental notes of everything else the PT in me wants to work on.

I ONLY had to wash a load of dishes in the dishwasher and a sink or two full by hand. I ONLY had to get more orange juice, more pepperoni sandwiches, and more apples. Check more temperatures, apply more band-aids, and change more diapers. Wash more hands and wash more faces.

I ONLY had to listen to a sick child whine and cry for 6 hours straight and hold myself together because I’m sick too and want to whine and cry with him.

As much as I needed to rest, I ONLY got him to take his medicine and fall asleep in time for me to sit down for five minutes and then it’s time to get dinner started. Then I’ll ONLY need to prep dinner, cook dinner, clean up after dinner, and then start the bedtime drill. All while continuing to break up fights, pass out drinks, pass out snacks, change diapers, wipe noses, check temperatures, wipe up spills, read stories, brush teeth, and pass meds as needed.

I’m only approaching the end of the first of my three 8 hour shifts of the day and comparatively, it’s an easy shift or I wouldn’t even be writing this. Inevitably, by the end of the week, someone is going to ask me some variation of “So what do you DO all day?” and I’ll add them to my list of people who will never understand. The work of managing a household with 6 people living in it and trying to make life seamless and keep yourself and everyone and everything else afloat is non-stop and the type of work that’s only visible when it’s not done. The mental and physical load of motherhood is overwhelming and never-ending. Add in the extra needs and challenges brought on by neurodivergence and the mental and physical load is absolutely crushing.

I could never pay someone to do what I do. In fact, one person couldn’t do it. There aren’t enough hours in the day. The work conditions would not be tolerable. The pay could never be enough. No one will work for 24 hours. No one can be on call at all times. There are no built in sick days. There are no vacation days even when on vacation. If a capable person existed, I could never afford to pay what the care and work and time and skill are actually worth.

Yet, there are people who believe this work doesn’t matter. That it’s not enough. That it doesn’t count. That it’s not as valuable as paid employment. That maybe it doesn’t even exist, I mean, how hard could it be? How much time could it possibly take? They wonder why it takes all day. Why there are no breaks. Why you can’t do the things they think you should be able to do. The things that they do. The things that can be done when a parent is not so outnumbered. The things that can be done when life and brains are typical and the challenges are not so all consuming and overwhelming. What do I do all day? Only everything.

Looking back, it was the perfect storm, and I should have anticipated the challenges we would face that day. Hindsight is 20/20, as they say, but I was trying my best as a mother to four young children to make some Christmas memories. You clearly were not feeling the Christmas spirit yourself, or I suspect you would have demonstrated even an ounce of kindness to a family visibly struggling.

We had just left a school Christmas event. It was an early dismissal day and I learned after the fact that despite there being a school concert immediately after noon dismissal, the children did not eat lunch at school that day. My child was also anxious that morning, and as a result, did not eat breakfast either. He then performed on stage – another anxiety provoking experience. By the time we left the school event, walked to our car, loaded up all four kids, and drove to the mall, we were already at 2pm, 19 hours past my child’s last meal. If you don’t have kids, maybe you don’t know, but low blood sugar meltdowns are a thing. If I had known that his packed lunch would go uneaten that day, I would have brought a snack for the ride to the mall as I frequently do for the ride home from school. I am a planner. I plan sensory activities and snacks throughout our day to prevent my child from becoming dysregulated. That day, I thought we could push through and make it to the mall food court. I was wrong.

After parking in the cold, wet parking garage (it was raining that day, so add wet clothes to my child’s sensory experience), we walked excitedly to the mall food court. We’d have a nice lunch together and then – the big event – we would go see Santa! I knew my child would need to eat before seeing Santa (which he was excited about, by the way). I thought I was being smart. I thought I had planned well. Remember, I didn’t know he didn’t eat lunch at school. I didn’t know he hadn’t eaten in 19 hours.

The mall was packed that day, as can be expected the last Friday afternoon before Christmas. The food court was no different. There were people everywhere. It was loud. There was Christmas music playing in the background. The low roar of the crowd combined with the Christmas music and the smells from each of the different restaurants in the food court and the low blood sugar and the wet clothes and the residual anxiety from the school Christmas performance and the disruption of his usual routine and possibly the anxiety of his upcoming visit with Santa was too much. His previously composed, excited demeanor deteriorated into the worst public meltdown I have ever experienced in his 6 years of life.

I don’t usually get embarrassed anymore when he has a meltdown in public. I am a believer in neuroscience and I understand why he loses control now. I know he’s not being “bad”. I understand that his nervous system has become dysregulated due to multiple stressors and that the best thing I can do is remain calm, provide emotional support, and in the process, ignore the stares and the pointing and the crowd gathering around. But, then, I saw you. While I have experienced obvious judgement, eye rolls, rude comments, and stares, I had never experienced it quite to the extent that you decided to dole it out that day. I don’t remember everything you said or did. The details are a blur. I do remember the awful look you gave me. Quite literally, the dirtiest look I have ever received from someone in my life. I remember the “Oh. My. God!” that you repeatedly gasped. I remember the pointing that was combined with the dirty looks as you pointed us out to your companion that day. I couldn’t make out everything you mumbled to us and about us. I was too busy supporting my child.

I especially remember how you made me feel. Your words and actions were successful that day. You saw me at a low point and decided to dig in and it worked. You made me feel worse than any other person has ever made me feel in my entire life. How does it feel to know that when you could have offered kindness or a helping hand, the actions you chose only added to another person’s pain?

I know what you thought. I know because you said some of it, but I also know because I’ve heard it all before from strangers, family, and even “friends”. You thought my child was a spoiled brat. (Those words come up often for us.) You thought I was a shitty parent. You thought I didn’t know how to control him. You thought he needed his ass busted. Maybe you thought he didn’t belong at the mall or that WE didn’t belong at the mall. That we should leave the mall food court for families with quiet kids. Kids who can maintain their composure in such a hectic environment. Kids who are “well-behaved” and don’t deal with the challenges my son deals with. You thought you knew what the problem was, but here’s what you don’t know.

You don’t know that my child has struggled every single day of his life. You don’t know the things that I have done and the things that I do every day to help him not struggle. You don’t know that, in fact, my life and the lives of my other children revolve around his needs. You don’t know that that trip to the mall that day to see Santa was one of our very few attempts this Christmas season to even try to do the things that “typical” families do for the holidays. You don’t know how badly I wanted to give my children – all four of them – just one simple Christmas outing that they would all enjoy.

You don’t know how far he’s come. You don’t know that he used to have meltdowns that lasted 8 hours per day because he would become so dysregulated with just normal everyday sensations and experiences. You don’t know the work that I’ve put in over the past 5 or so years to help him. You don’t know the hours he spent with Birth to Three. You don’t know how many visits to outpatient occupational therapy he has had and how our life for years has revolved around appointments. You don’t know about the doctors and professionals we have seen and the ones that have helped and the ones that were a waste of our time and money. You don’t know about all the miles we’ve traveled to seek help because there is very little available locally. You don’t know about the money we’ve spent to help him. You don’t know about the sensory diets and the one on one time and the floor time and the collaborative problem solving. You don’t know about special diets and the supplements. You don’t know about the routines and the schedules and the work we’ve done to get him to sleep like a typical child. You don’t know about the tears, mine and his. You don’t know about the worries and the fears that we face.

You don’t know that he’s gone from essentially melting down nonstop to just a few small meltdowns per day to a few per week and then to only having ONE MELTDOWN IN 41 DAYS (not that I’m counting). You don’t know that I -a shitty parent in your eyes- likely spend far more time working with my child than any other “good” parent you know. The fact that he recently went nearly a month and a half without becoming dysregulated, which used to be a multiple times per day occurrence, is proof to me that I am doing something right. That my approach to his challenges is working. Of course, you know nothing about that and only judged us based on your five minute observation.

It didn’t occur to you to offer support, or kindness, or grace, or a helping hand. You only offered cruelty to a mom and child who were already struggling despite doing their best. I know what you were suggesting with your response to our struggle, but your response was no indication of what kind of parent I am. Your response, however, speaks volumes about what kind of person you are.

Thanks for joining me! Stay tuned for adventures from our Sensory House.

Good company in a journey makes the way seem shorter. — Izaak Walton