I had a revelation the other day. I was talking with the fifth parent of the week who had just found our support group.  She had just been told her child had “sensory issues” by a physician and given no further explanation. I started out by sharing the Sensory Processing Disorder (SPD) basics with her and what it can look like in a child. I explained that we had more than just the obvious senses in our bodies. We have hidden senses, such as all the information from our interoceptive system. She had an “aha” moment when I mentioned how hard it can be for our kids to potty train and sort out those internal signals provided by this “hidden” sensory system.

I often hang up the phone after speaking with new parents who are new to the SPD world, and I feel worried that I overwhelmed them with too much information or that I didn’t explain things clearly enough. On this particular night the mom had to go into another part of her home to talk to me about the difficult time she had with her child regarding potty training, bed wetting, constipation and other issues pertaining to her child’s gut. Her child had been within earshot and out of respect for him and his pride, she had to leave the room so he couldn’t hear what she was saying. As most of us know, this is one of the most embarrassing issues for our kids with SPD, especially as they grow older. The interoceptive sensory system has been given the nickname the “hidden sense”, thinking about this it dawned on me that it has a double meaning. It’s hidden in the sense we can’t see it and therefore aren’t always aware of it, but it’s also hidden because we don’t talk about it. The interoceptive system impacts private subjects that both kids and parents don’t want to speak to just anyone about.

The interoceptive sensory system is the internal talk in our body. For example, do you feel hot or cold, are you in pain, feel sick, have to go the bathroom? The “hidden” sense is what tells you those kind of things. In our SPD kids, this is the sense that tends to be at the bottom of the totem pole when it comes to developing and functioning normally. It’s only when all of the other senses are regulated and in check that our body is quiet enough to listen to what those internal signals are telling our brain. Therefore, it’s not uncommon for a child with SPD to experience problems with toileting. By the time the brain gets the signal that the bowel or bladder is full, it’s too late and an accident happens. In some cases the brain doesn’t get the message at all or doesn’t know how to make sense of the message.

The other day I was talking to our pediatrician who is amazing at identifying SPD in her patients. She mentioned that it’s rare to find an SPD child that doesn’t have some sort of problem with interoception. Oftentimes it results in low self- esteem with kids as they age. They can’t go to sleepovers as they have to wear incontinence undergarments at night instead of normal underwear like other kids.  It can cause chronic constipation to the point that it stretches the bowel out and can cause hemorrhoids, anal fissure. Urinary tract infections can become common as well. This all can result in requiring the intake of fiber or stool softeners and painful bathroom trips.

Just stop for a minute and think about what it’s like to us, neurotypical people to use the bathroom. We don’t have to think about it because it’s so normal for us. You and I can do it in under a minute, especially if you’re a parent with kids running around the house!  When you break it down though, it’s actually incredibly complex.

First, your brain gets the message from the bladder or bowels that you have to go and you head toward the bathroom. You often have the ability to wait a bit until you are back home, near rest stop or in the middle of something. We don’t develop anxiety over the feel of the toilet seat, the loud sound it might make when it flushes or the fact that you have to line your body up to sit on the seat and not fall off or or be scared that you might fall in. We don’t have to think about unbuttoning or unzipping our pants, we just do it automatically and without looking down. Once seated it doesn’t take any effort for us to put our interoceptive sense to work and tell our body it’s ok to “let it go”. Then comes the task of cleaning up afterward and we have the skills to spin the roll to get that right amount of toilet paper off.  Once we determine we’re clean, the process reverses and we stand up, pull up our pants, zip or button and flush. We go to the sink to wash our hands which itself requires multiple steps. We do this many times a day without giving it much thought.

Now think about the entire process from the perspective of an SPD child it’s a huge problem. Imagine you might or might not get the signal that it’s time to go. If you do, it’s a flashing red light at this point and you have to run to get there in time. The next problem is the difficulty of getting your pants unzipped or unbuttoned. Think of having thick gloves on and trying to do this. Your vestibular sense is off and you are tactile sensitive so the toilet seat is hard and cold and that hole in the middle is HUGE!  How are you ever going to sit on it and keep your balance? If you do manage to make it in time there’s the problem of getting your body to go. If you’re constipated that takes great concentration and effort and it may be very painful. Then follows the act of cleaning. You’re already in a panic mode with a self flushing toilet. What it if makes that horrible loud sound before you get up and out of the way? The sight of the toilet paper makes you gag along with the smell and you lack the motor skills to clean yourself adequately. You still have to get your pants back up and fastened again, and then to the sink to wash your hands and the list continues. It’s overwhelming to our sensory kids when you think about it that way.

Is it frustrating to parents when kids can’t potty train easily? Absolutely. Is it out of their control? YES! Well meaning people throw out advice like putting round cereal in the toilet as a targets and to use a reward system, but this advice frustrates me and I have to laugh. I wonder how many boxes of cereal SPD parents have dumped in toilets and are way past that by this point? Here’s what I can promise you. With a good sensory therapy plan in place and in action, this whole issue can be resolved. It may take more time than you’d like, but the SPD child will eventually get it.

I completely understand why none of us want to talk about this to others because we would never intentionally embarrass or humiliate our kids. That being said, know you’re not alone if you are dealing with this. It’s part of our world whether we like it or not. For parents who deal with this, the key is looking at uncovering the hidden sense as another step in patience, understanding, and empathy for our kids. It’s one more example of the uphill battle that our SPD children fight everyday, but they will overcome and so will you as a parent. Hang in there!

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

Meggin has recently achieved a long term goal of founding a non-profit organization, Sensational Hope (www.sensationalhope.org), which provides community awareness about SPD in the Kansas City Metro Area. It connects families as well as assists children with SPD in the purchase of needed therapy equipment. Meggin resides in the Kansas City area with her husband of 15 years, Erich, her two sons, Bryce and Jackson, her two furry children (dogs) Chance and Sadie, two Rabbits (Max and Bailey), and last but not least, 10 fish.  Meggin is honored to blog for the STAR Institute and is looking forward to connecting with other SPD families.