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.

New Year, New Start

I found this post this morning from a year ago, the start of 2012.  It was interesting to read back on it. Some things I got wrong: Ben is not daytime trained and has never once peed on a potty.  Travel is not easier as evidenced by Liam staying awake for 48 hours straight during our move from Alaska, despite being given 4mg of melatonin.  Other things I got right..... I DID come to acceptance of our therapy schedule and life and I did start exercising.  I am proud of me.
Here is the year old post:
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I went back to re-read my summary of the year 2010.  Thankfully, my summary of 2011 is much more positive, and thank goodness 2009 and 2010 were tough years, and I needed a break.

2011 was the start of a new chapter for our family.  Liam changed so very much over the last year and is now such a talkative, social little guy that it is hard to remember where we were at 2 years ago.  Liam finally became daytime potty trained.  He has finally started to answer questions and after the age of 4 F-I-N-A-L-L-Y started to ask questions!  Ben stopped nursing this summer and seems to have mostly stopped spitting up, and he was weaned off reflux medicine.  It wasn't all roses as Ben has been given several diagnoses this year: Sensory Processing Disorder, Mixed Receptive-Expressive Language Disorder, and Early Childhood Developmental Delay, but having travelled the special needs/special education path once, I feel more peace the 2nd time around.  As for me, I met many of my goals for 2011, and have spent the year enjoying my boys, reading, hiking (though not as often as I hoped), and trying to find happiness in everyday moments.

2012 will bring more change....another move for us....it will be Liam's 4th house and Ben's 3rd.  It will be Dave's 5th assigment (6 if you count the deployment) since Liam was born.  Ben will start preschool and our years of raising a baby will be over for good.  This is the year I say goodbye to all things baby related.  Liam might or might not (I keep changing my mind) start Kindergarten in the fall.  We are at the cusp of entering the stage of childhood where we can more easily travel and our boys are independent enough to participate in activities.  Hopefully at some point this year we will finally have two children that can talk. We should have two daytime trained boys at the end of this year.  I would like for me to gain an acceptance of our therapy schedule (for Liam--speech 2 days a week, OT 3 days a week, ABA 2 days a week, special education 5 days a week; for Ben--Early Intervention-1 day a week, speech--1 day a week, OT--1 day a week, Social Skills group--1 day a week, and Floortime 1 day every 2 weeks).  I hate the non-stop going but both boys have made so much progress that I need to accept it as something that is needed at the moment.  When Ben starts school, I want to start an exercise schedule.  I have tried to exercise regularly over the last year but fail at it as I seem to have no free time (see schedule above).
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2013 will bring yet another move.  For 2013, I am again hoping for two daytime trained boys and an end to diapers.  I'd like to keep going with the exercise routine I started.  I'd like the boys to have re-evaluations by a developmental pediatrician and school evaluations for IEPs.  Maybe I can even start thinking about what type of part-time work I can do.