Just when I thought I knew everything about SPD

In the summer of 2009, it became clear that something was off with Liam's development and I threw myself into research, and most of it focused on Sensory Processing Disorder (SPD).  I learned there are actually 8 senses.  Then Liam was diagnosed with PDD-NOS and I remained aware of SPD but started researching other things as well.

In fall 2010, I became worried about Ben and blogged about it: http://routhierfam.blogspot.com/2010/11/it-is-probably-nothing.html

Obviously, it wasn't nothing.  Ben started Early Intervention and a year later was evaluated by a developmental pediatrician, who confirmed Ben has SPD and is at risk for a future diagnosis and recommended speech therapy, OT, ABA, and social skills groups.  Without the autism diagnosis and without his delays being severe, we have been unable to secure much of the recommended treatment.

While all this was happening, I was trying to potty train Liam, which was not easy.  Around the time, Liam turned 4, he finally became dry during the daytime.  He is still in nighttime diapers and that will not be changing in the near future.  The problem is that Ben turned 2.5 about a month after Liam was finally consistently dry during the day.  Then shortly after he turned 3, we moved from Alaska to Alabama.

Since arriving in Alabama, we have been trying to encourage Ben to use the potty and it has been a dismal failure.  Initially he refused to sit on a potty for longer than 5 seconds as he won't sit still.  Now he will sit, but he has NEVER once managed to produce anything in the potty.  If I let him run around naked, he will pee on himself and deny he has done so with urine running down his leg.  He can poop while doing gymnastics.  When I change his diaper, he asks me if he has peed or pooped.  He seems to have no awareness.

His OT recently left for another job and he has a new OT, and Wednesday she mentioned that Ben has poor body awareness which is why he drools so much and why he is still in diapers.  I knew body awareness was "part" of SPD but I had forgotten about it.  I had confused it with motor planning (which Ben excels at but Liam struggles with) and with vestibular sense (which is why both boys crash).  Body awareness is actually called interoception and what I discovered about caused all sorts of light bulb moments.

This website about interoception had this to say: "If a person is under-responsive to interoception, they may not feel or respond to these sensations appropriately, quickly enough, or at all. They may rarely feel themselves breathing or their hearts beating. They may not feel hungry or thirsty often, so they may not perform these everyday tasks as often as others because they do not sense the need to. They will often be slow potty trainers and may end up developing enuresis because they do not feel the need to eliminate bowel waste or urine before the body begins to perform the task anyway. They may not breathe or sweat when their bodies should because they do not feel the need to."

Light bulb!

Ben happily skips meals and has never been interested in eating.  He didn't nurse often.  I always attributed it to reflux and even SPD and oral defensiveness, but what if he didn't get hunger cues?  That makes a lot more sense, as it explains multiple issues for him.

Then there is this website on interoception.  It affects digestion!  Digestion!  In another website it mentions that individuals with a poor sense of interoception often have digestive problems, such as constipation and/or diarrhea.

Light bulb!

That same websites and others show that much research has been done to connect interoception to mood, as that is the sense which regulates are sense of well being.

Light bulb!

Ben is my child who has always bounced between strong emotions--screaming one minute, giggling the next.  This cycling of emotions has always worried me as I have a family history of bipolar disorder.  It has also made him hard to evaluate as his compliance varies day to day and moment to moment.

I was going to wait until we moved to have Ben re-evaluated but am starting now.  He has a first appointment with a psychologist on February 7th.

In the meantime, I am going to dig out our old brushes and start Wilabarger brushing protocol as I read somewhere that it helps interoception and brushing was quite successful with Liam.  Here is a list of things I am going to look into for improving interoception: http://www.sensory-processing-disorder.com/interoceptive-sense.html  I am also considering buying some musical sensors that go inside a pull up as it sounds like a good way to alert Ben by sound that he is peeing.