Towers of Pillows

Anybody who has a child on the spectrum or with SPD probably took one peak at that title and shook their head in understanding.  “Yep, my kid does that too” you’re saying.  Sometimes I look at Andy and just think, if only he could talk like a normal kid, he would probably be a genius!  He is such a little scientist.  I love to watch him work sometimes and try to see things from his perspective.

It was maybe just a year or two ago that I started really trying to notice what he was doing. What the autism community calls stimming (repeated self-stimulating behavior), I call him being a mini research scientist!  Having that in my bones (and wanted to act on that someday in the future), I started approaching my view through the lens of a researcher. What is he thinking?  What is he trying to figure out? What scientific phenomenon is he discovering today?

I think it started with the tower of pillows.  Now, he’s been doing this off and on for YEARS! In fact, I remember when he was around 5, we were creating a PECS system of cards for him and the therapist asked what some reward activities might be and building towers of pillows was definitely one he enjoyed.  It got its own picture card.  He loves piling the pillows up on top of each other as high as he can possibly go, climbing up to the top of the tower and then crashing down to the couch and burying himself in between the pillows. This is what we call in the Sensory world, a seeking behavior.  He is seeking heavy input. At times like these, he is in need of the pressure of the pillows around him. Maybe because he is having a hard time feeling where his body is, so crashing into a pile of pillows gives him that input he so desperately needs.

Eventually, he got hurt one time as he grew taller (seriously, what are we feeding this boy? He’s going to turn into the Green Giant!). We put a stop to the towers of pillows because it was getting dangerous.  But then he discovered BOXES.  Towers and towers of boxes. Now I know that most kids can build towers with boxes and you may be saying what is so special about that?  What is amazing to me is that, when the boxes have been played with so much that they start falling apart, he still has some uncanny ability to layer them on top of one another, move them ever so slightly, getting them to balance precariously, just so. And voila, he has a tower of 6 or 7 boxes that would make an architect proud!  I mean, sometimes, the towers he makes would put the Leaning Tower of Pisa to shame.  Of course, the whole point of the tower is to make it crash, which gives him that “controlled” loud noise that has always brought him so much joy.  I love hearing that boy laugh.  He has always been such a happy child.

Lately he has been back to doing the towers of pillows again, which is fine by me because I know he is just needing to get some input on his body.  He is having trouble with being aware of his body so he needs that to help him feel his muscles and feel where his body is in relation to the world around him.  So we let him and just take it with a side of caution, making sure he’s not hurting himself.  Maybe it’s because he is growing so quickly right now.  We haven’t quite hit puberty yet, but by the way he’s eating, we must be getting close to the raging hormones so maybe he’s feeling a little unorganized or unsure of himself.  So the towers are back and he’s as happy as ever with the building and crashing. Hey, at least it helps him sleep at night!

What do your children to for proprioceptive input?

Katie’s New Diagnosis

Dan and Katie May 2015This is an overdue post.  We’ve now been in the Cincinnati area for over a year and we have been slowly getting the kids settled into their new team of doctors at Cincinnati Children’s.  After meeting with the endocrinologist, neurologist and neurodevelopmental specialist, we decided to start the full testing for Katie.  Since she was about to turn 6 and was entering Kindergarten this year, we thought it was time to get the ball rolling.  We had suspicions of ADD/ADHD and of course knew about the speech and cognitive delays.  What we weren’t sure about was if she would test on the Autism Spectrum.  We had also started seeing some eye fluttering and she also lost her balance one day while trying to pull her pants down to go potty, so we scheduled an EEG just to be sure.

So off we went to a regular speech evaluation, an ADOS (Autism Diagnostic Observation Schedule) speech evaluation, an ADOS psych evaluation and an EEG.  Overall, based on my own observations, I thought she had some pretty good imaginative play skills and not a lot of stimming behaviors.  While I do see the sensory processing problems with her, I have never thought that her skills were on the spectrum.  Ultimately, the doctors decided to go with the diagnosis of ASD and Intellectual Disability.  Her Developmental Pediatrician explained to me that, though they know her delays and sensory issues are caused by the genetic mutation, giving her the diagnosis of ASD opens up therapies, grants and insurance payments that might otherwise be unavailable to her.  The doctor explained that she has enough of the markers to place her in that category.  Of course, as a mother, I had to have my good little cry on the way home from that appointment, but I finally accepted the fact that it does open up services that she needs to move her forward.

As for the EEG, she was having Absence Seizures.  The data showed that for the 45 minutes that they were monitoring her, she had several seizures.  The doctor agreed that there was enough evidence that waranted her starting medicine.  She is now on 4 ml of Ethosuximide (generic for Zarontin) to help control her seizures.  We haven’t seen any side effects.  One benefit that has been associated with this medicine is that she is finally sleeping through the night almost every night now.  Whether or not that is an effect of the medicine, the result of increasing her glyburide, the seizures stopping or just getting older, it’s hard to tell, but we’ll take it!

So to summarize, Katie now has full-blown DEND syndrome, a diagnosis of ASD and intellectual disability.  However, we are seeing an increase in her speech and a decrease in her melt-downs, but that is for another post.

What kinds of diagnoses does your loved one(s) have?  Were you surprised?  Dissapointed?  Relieved?  Feel free to share in the comments.  I love to hear about what other people are going through.