Out-of-Sync

 Of course. 

Why wouldn't he be.  

Instead of floating in the dark cocoon of a womb for the third trimester, he spent those three months poked and prodded under flourescent lights.

Instead of my heartbeat he heard the sound of alarms. 

Of course his undeveloped nervous system was compromised and thus his ability to integrate sensory input.

When I wrote about Elias squeezing his sister in the car, fellow special needs mama and blogger, the always wise Niksmother, submitted this comment:

"I don't recall if Elias receives any sensory-based OT; what you've described in these posts makes me think so keenly of a sensory processing issue —DEFINITELY NOT A VIOLENT CHILD. The intolerance for the crying, the hard squeezing of Tonz (and of poor Olive!).

Have you explored sensory processing disorder (SPD)? There are many books and websites out there which can explain it better than I can. (Carol Stock Kranowitz is the "founder" or developer of SPD treatments. http://www.out-of-sync-child.com/ and http://www.comeunity.com/disability/sensory_integration/carol-kranowitz.html)

It sounds like Elias has difficulty in gauging how much strength he needs to use and that he may have some auditory sensitivities, too. There are lots of things you can do at home to help with this.

Ask your OT about a "sensory diet" of activities which can help Elias with proprioception, vestibular and auditory regulation. Sensory-based therapy has made a *world* of difference for my son, Nik."

Aha! 

I don't know if you remember the long list of Elias's diagnoses, well number 14 reads:  Sensory Modulation Disorder: Processing sensory information.

When your child has multiple disabilities, and you are more of a poet than a scientist, its almost impossible to sort through it all; so since the senses are invisible, until now I've let this one go, focusing more on the obvious like breath, vision, movement, communication, and growth. And yet all of these areas are also affected by the far and near senses.

So my research begins.

After checking out the two websites Niksmother suggested,  I drove to Title Wave, our local used book store, and picked up a copy of The Out-of-Sync Child by Carol Stock Kranowitz.

In the chapter about problems with the tactile sense, Kranowitz discusses kids who experience an under-responsiveness to touch, and she could have been describing Elias. Little to no reaction to pain from scrapes and bruises, unaware of crumbs around his mouth or a runny nose, the need to touch things and people.

And this: May hurt other children or pets during play, seemingly without remorse, but actually not comprehending the pain that others feel.

Oh Elias. 

Not malicious. Just unaware.

Unable to fully process different sensory input. To know the difference between rough and gentle. To regulate his movements, to know the amount of strength needed for a hug verse a tackle.

So I have more reading to do. More terminology and resources to sort through.

Of course.

Comments

[Meg]

When I read about this disorder, I think this is what my son, Casey, has as well. He has qualified for therapy to treat issues around taste and smell, touch and auditory processing, but the doctor hesitates to attribute all of his delays to this...so autism is also thrown in for good measure. He starts therapy next month for the sensory processing dysfunctions and I hope this will make his world a little bit easier.

[Jessica]

((((HUGS))) I bet it is hard to learn yet another thing about Elias' diagnosis. I am glad you do though. I would LOVE having someone so knowledgeable (or willing to get knowledgeable) being a mama to some of my students.

[Heather]

"The Out of Sync Child has Fun" is a good companion book with TONS of games and activities, most of which you can do at home. We've used it quite a bit here :)

[niksmom]

So glad you are finding those resources useful! Can't wait to read more as you research, discover, experiement. Hugs. (GENTLE ones! ;-) )

[Noel Dennehy]

Wow-these blogs are so important for mothers who need other mothers to help them- where doctors can't know it all. It is just so beautiful this bonding, giving, etc that I wish had been around when I was struggling with my child 25 or more years ago. You are so lucky, so keep writing and reaching out...
lots of soft hugs

[DiVaughn]

Oh, wow, Christy, I had no idea you didn't know or understand sensory issues. They're practically a given for preemies.

"Sensational Kids" is a more recent book, but I think "Out of Sync Child" is still the gold standard. Evan's kindergarten teacher had it on her desk (with post-it notes stuck in it) on Open House night. She'd heard Evan was terrified of the bell and went right to work. We loved her! {{hugs}}

[DiVaughn]

Hi Christy~

I'm sorry, I didn't mean to sound like a know-it-all in my last comment, or to dismiss Elias' new dx. I know I have read things that I contributed to Elias' sensory issues, but I've never said anything. I guess I just assumed you knew. It's amazing that with the long NICU stay, and all of the follow-ups and therapies that Elias has had, nobody mentioned to you that Elias could have sensory issues. Maybe everything else was just more important. I'm sure you're already providing sensory input for Elias just as a matter of course...there's no way he could be as old as he is without you compensating in some way by instinct. :)

There are so many things you can do. Let Elias draw on the dishwasher or an easel with dry-erase markers. Let him practice letters and numbers on a cookie sheet covered with shaving cream...mix salt into it for more texture. Get a tote box and fill it with dry beans. Hide small toys in it and have Elias dig around for them. Wrap him up tightly in a blanket, or make him a weighted quilt with large washers or rice in the squares. Sit him on a yoga ball and tip him from side to side, and let him bounce up and down. Get him a ball pit and encourage him to just flop down in the balls, or if you have one of those little slides, stick that in there and let him slide into the balls. Let him hang or swing from a chin-up bar or trapeze. Let him swing or do the merry-go-round or the rocking horse (or chair) as much as he wants. Wrestle with him as much as possible.

The Willebarger brushing protocol would probably help him a lot. Have an OT at therapy or at school show you how it is done. You use a soft, bristly surgical scrub brush to brush Elias' skin (in one direction only) followed by joint compressions. This will help "wake up" his skin. Good luck...sensory processing disorder isn't life-threatening and it's fairly easily managed once you know what you're up against. :)

[Erin]

It seems a bit weird to say this about yet another diagnosis, but that's great! Knowledge has been your best tool. I bet this eases some (a little?) of your worries.

A while back, I came across this tutorial for making a weighted blanket:
http://craftnectar.com/2009/09/03/calming-the-senses-with-weighted-blankets/
(to make in all your free time, haha... or I'm sure you could purchase one online)

[Sara]

Dang, I think I need to look into that for Toby. He is highly sensitive to loud and sudden noises, and pain takes a while to register. He modulates his hugs well etc. but still.

That neighborhood rink - wowow!!! I would be there daily ;)

[A Friend]

And there it is - something of a relief.

[Christy]

Oh DiVaughn, you didn't sound like a know-it-all and I have always known about his sensory issues but in an abstract way, I've never taken the time to really research it. And the good news for me is that we've been addressing sensory issues with a "sensory diet" of sorts in therapy and as a consequence at home without putting a lot of thought into it. Now I feel like I can be more intentional.

Knowledge is always good, even when it's hard.

Thanks all for the thoughts and ideas here!!!!

[DiVaughn]

The good news is, now that you're more intentional, and the more modulated he gets overall, the better he will be with the loud noises. It just happens as a matter of consequence as his nervous system finds a baseline, although it could take a long time. That's why you don't address simply the tactile deficits. :)

[Kathy Sue]

Just got a flier for a workshop on creating sensory diets--A full day June 14 or 16--$179 if you register before June.

http://www.regonline.com/builder/site/Default.aspx?eventid=855799

[Christy]

Thank you Kathy Sue!!! I will attend for sure!