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?

New Tests, New Diagnoses, New Pills

It’s been an absolutely crazy busy month which is why I haven’t posted anything in so long.  Andy graduated from Kindergarten on Friday and the last day of school was Monday.  We are trying to find a house to buy (if we get approved) while also looking for a place to rent just in case we can’t get everything closed by our lease end (hello, NOT paying $2200 a month to stay here!).  Add to all of that a job search for summer and a teaching job hunt and I’m already exhausted.

Andy has once again added something to the mix of his symptoms for us to dig into.  Back in February when he was having those bad lows, I started noticing some unusual behavior.  He would just stop all of a sudden whatever he was doing, stare into space and his eyelids would flutter.  This all would take place within about 5-10 seconds and then would be over as fast as it started.  The first one happened when he was having a low so I thought it might just be a reaction to his low blood sugar.  But when it continued to happen off and on at varying times, I started to get suspiscious.  One day, I happened upon a documentary while channel surfing called “Autistic-Like” and many of the symptoms of this little boy were very similar to Andy.  When they mentioned having an EEG and finding out that he was having Absence Seizures, the light bulb clicked over my head.  As I listened to them describe what they saw as the EEG recorded the seizures, it sounded just like what I had been seeing in Andy.  Since Epilepsy is part of the syndrome he has (DEND syndrome) it has always been in the back of my mind, but I always just equated epilepsy with the grand mal type of seizures that were very obvious.  I had never heard of any other kind.

So I put on my research cap again and got down to finding out as much as I could about it.  When he had his yearly check-up in April, I mentioned it to the pediatrician.  She said it wasn’t an emergency, but that we should get it checked by the neurologist when we see him next.  I’ve mentioned it to our Neonatal Diabetes support group and got a few other parents responding that they have seen and/or been diagnosed with varying types of seizures.  So now, we are checking into it.  The neurologist told us that we needed to do an EEG to get a better picture of exactly what type of seizure activity he could be having since the treatment for different types can actually make one worse if you get it wrong.  So off to another test we go.  We are scheduled for Monday right now, but it may change as I have to coordinate with dear hubby with his job.  I also think he would be better as a support for Andy during the placing of the probes as he is much better at calming Andy down.  I’ll update when I can.

We are also starting Andy on some medicine for ADHD tomorrow.  After a year in Kindergarten and a discussion with the IEP team and all of Andy’s doctors, we have decided it is time to explore some medicine to help him calm down a little so he can focus.  Of course, with Andy’s reaction in February to the amoxicillin, the endocrinologist is very cautious about trying any new meds.  I’m a little scared too so we have decided to get him hooked up to a continuous glucose monitoring system (CGMS) for about a week.  It’s a pretty small sensor, but we do have to go to the clinic for the nurse to insert it somewhere on his body.  Andy hasn’t had anything permanently attached to his body since he was 21 months old so I’m curious as to how he will react.  He’s now 20 pounds heavier and much more muscular so I hope it won’t be too much of a struggle.  But it will give me peace of mind and that’s the most important thing.

With all of that going on, we are also finally starting some speech therapy for Katie.  It’s actually a class we are attending for 8 weeks this summer so I’m hoping to learn a lot.  Luckily, they were more than happy to have Andy join in and yesterday’s class seemed to go well.  At least the kids group leaders didn’t have to come get me in the middle of class, so I’m thinking that’s a good sign!  We are also attending a playgroup on Thursdays for toddlers.  Katie has been going for 2 weeks now and is doing well and the great ladies at the hospital agreed that Andy could come in too.  Today will be the first day for that.  We’ll see how it goes.  The main think I worry about is his size compared to the toddlers in the class.  Hopefully he can behave and maybe even learn a few things about social interaction.  Say a prayer for me to have patience.

Summer Has Begun! 🙂