Sensory Processing Disorder (in Infants and Toddlers)

When Sophia was 15 months old, I was directed to the Sensory Processing Disorder Resource Center's checklist for SPD in Infancy and Toddlerhood (which can be found by clicking here).

I was about 5 months in to a 10 month period (10 months old - 20 months old) of the worst sleeping habits possibly ever seen in human behavior. I was baffled, and exhausted. I had touched lightly on the subject of sleep in past blog posts but let me make one thing very clear: sleeping was a HUGE issue. We were pretty miserable. And now I see that it was a huge red flag. But at the time I thought maybe it was something *I* was doing. Even the doctor at the 12 month well check-up expressed that Sophia "was just one of those kids who doesn't need a lot of sleep."

At the 15 month check up, I brought along the checklist that I had filled out because I had some concerns (and really, wanted a sleeping cure, or at least explanation). Of course, she wasn't walking yet so that took priority and while I can see NOW how those two things go hand in hand, at the time I was just a zombie mommy that probably shouldn't have been driving to these appointments anyway! (I kid, I would never put Soph in jeopardy).

Our SPD concerns were brushed off. Sophia doesn't present any of the typical symptoms (not sensitive to noises, bright lights, clothing; not a risk taker, has excellent fine motor skills). We started "traditional" Physical Therapy through early intervention. (strengthening and training of the muscles) Progress stalled and we started OT/PT at the hospital.

Where I was expecting heavy equipment, possibly walkers or othotics, instead we got buckets of beans and "super suits" (previous post mentions TheraTogs, SPIO)

Here is a full SPIO suit (in PINK!!)

Our new PT believed that Sophia had Sensory Processing Disorder (SPD for short).

So we, as humans, "Receive And Perceive Sensory Input Through Sights, Sounds, Touch, Tastes, Smells, Movement and Balance, Body Position and Muscle Control." 

"Sensory Processing Disorder - also known as Sensory Integration Dysfunction - is still in the process of becoming widely accepted and treated by all professionals."

So it's unlikely that you will walk in to your child's pediatric office and receive a diagnosis.


PS: FRONT PAGE OF THE SPD RESOURCE CENTER: "Ever wonder why you can’t seem to calm them down or get them to sleep?" *cough cough, general practice pediatricians, cough, cough*

The SPD Foundation states: "Sensory Processing Disorder can affect people in only one sense–for example, just touch or just sight or just movement–or in multiple senses. One person with SPD may over-respond to sensation and find clothing, physical contact, light, sound, food, or other sensory input to be unbearable. Another might under-respond and show little or no reaction to stimulation, even pain or extreme hot and cold. In children whose sensory processing of messages from the muscles and joints is impaired, posture and motor skills can be affected. These are the "floppy babies" who worry new parents and the kids who get called "klutz" and "spaz" on the playground."

When we look at Sophia, she specifically has Motor Planning issues; ie., right leg is NOT talking to brain or vice versa. She has a couple little "quirks" as symptoms that therapy is helping her out tremendously with, but of course our overall goal is to help her get up on those two feet and walk. (falls under body position/muscle control SPD criteria)

Her vestibular system (motion/balance) is off or not quite yet fully developed- the world is scary when you don't know which way is up and which way is down.  Sophia stays low to the ground to control her environment and to keep herself safe. Sophia prefers not to take risks involving heights or mobility- she doesn't want to fall and is extremely scared of heights. She also gets car sick in the car if she is reading a book or doing an activity and not paying attention to her surroundings.

Sophia has hypermobility. (Body position/muscle control) The term double jointed is often used to describe hypermobility; however, the name is a misnomer and should not to be taken literally, as an individual with hypermobility in a joint does not actually have two separate joints where others would have just one. Some would say that the fact that she can stand up and hold it there is pretty impressive. Walking requires a lot more thought. This is something that she will never grow out of, but hopefully early intervention will give her the strength that she needs for everyday life skills.

So, put those three together and you have our daughter:

The love of my life

Early Intervention + Starting Hospital Therapy

Sophia had Physical Therapy once every 2 weeks through the Early Intervention Services in our state, Birth to Three. B23 comes to your house for the therapy, the idea being that the child will be more comfortable in their home environment.

Home therapy consists a lot of going up and down the stairs, using pillows to challenge balance, swinging her side to side in a blanket, and having her sit in her little armchair and standing up in a forward motion. (Jump to the future a bit: now that it's warm out, we are outside- swinging, walking with a tool called a walk-a-long {more on that later} and playing with things like a parachute).

After a couple months of Physical Therapy (and OT) Sophia wasn't making much, if any progress. A friend mentioned that her son enjoyed his therapy at our local children's hospital. I've mentioned before that we were willing to try anything and everything, so we made an appointment for evaluation there.

At the hospital, they have a large gym devoted to Occupational and Physical Therapy. Sophia was evaluated in the open gym part and demonstrated her scoot. She went up and down standard stairs and little bitty stairs. She had to use a bench to pull up to stand, and reach for crayons out of her reach. She was just about to turn 19 months, and she qualified for therapy solely based on her gross motor delay. They write out a "prescription"- she was prescribed 12 hour long sessions (once a week for 12 weeks) and given a diagnosis of low muscle tone. The intake nurse video taped our session because of the "novelty of movement Sophia presented".

Starting PT at the children's hospital was a whole different experience. For one, they have all the equipment anyone who "walks" in there could ever need, and more of a multidimensional approach.  I can only assume our PT watched the video of Sophia and came to the conclusion that she was a little jumpy, a little cautious, a little leery.... so she talked to me for awhile while Sophia explored the room. Then, Sophia sat in a bucket of (uncooked) kidney beans for 45 minutes, I kid you not. That was her therapy for the day. Digging in beans! And she loooooooved it. Now, as you read this you can already tell my bias. I obviously like one therapy hour over the other.

At both, we talk a lot about "mid-line" and how Sophia is asymmetrical. She has to think about crossing her arm or hand over her body. We play to the left a lot, since she always gravitates to the right. Things like that to help her correct her stance. She always tucks in her right leg, and we have to say "straighten your leg" or even move it for her. She is allowed to sit legs straight out or criss-cross-applesauce (aka Indian style). The first two or three hospital sessions Sophia sat in the bucket and practiced pouring beans to the left with her right hand, and vice versa, and we put beans in her toes, and on her head, and all sorts of silly things.

We then moved on to something called the Theratog suit, a kind of weighted suit that makes you think about the muscles you are using (and think about them again, in a different way, when taken off).

We've personally had more success with the Spio suit, which is best described as a wet suit like a scuba diver would wear. It's just clingy (clinically called compression) and makes her feel secure (I guess).

The PT at the children's hospital believes that Sophia has Sensory Processing Disorder. The next post will be all about SPD!