Saturday, June 5, 2010

Sensory Processing Disorder

Maggie kind of reminds me of Dori in Finding Nemo. She doesn't suffer from short-term memory loss, but she is always wide-eyed and entranced by the world around her. She is jolly and easy-going like Dori, but can't focus on one thing for very long, especially if it is something that requires a lot of focus like eating. She might do it for a little while - but then something else catches her attention and it's like she's thinking: ooh there's a big light in the corner of the room I want to stare at or wow, who is that other small person making all that noise across the room?

You might compare it to ADHD or something similar but it's not. Maggie's issues are sensory in nature and, although it's hard to diagnose in babies, most likely she has sensory processing disorder. Also know as sensory integration, SPD is when a child cannot process their senses properly. Here is how the SPD Foundation describes it as:

"Sensory Processing Disorder is a condition that exists when sensory signals don't get organized into appropriate responses. It's like a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. 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. Other children exhibit an appetite for sensation that is in perpetual overdrive. These kids often are misdiagnosed - and inappropriately medicated - for ADHD."

Maggie finds it difficult to eat like a normal baby because she is constantly in alert mode - looking at every light, turning her head toward every noise. Most likely she has these issues because her sensory nervous system was not developed fully when she was born three months early. After all, her eyes were exposed to bright hospital lights when they were still supposed to be seeing only dark, her ears heard loud buzzing and beeping alarms  before they were supposed to hear, and her skin was poked by needles and squeezed by blood pressure cuffs before it was supposed to be touched. So it makes sense that she her sensory system would be a little out of whack. Not all preemies have major sensory issues like Maggie does, but most of them do show some signs of them.

When this all started a few months ago I was feeding Maggie in the den with Mary Lawrence often right there beside me, frolicking around or making normal child noises playing with her toys. Pretty normal for most newborns who have older siblings. Well in Maggie's case I might as well have been feeding her smack in the middle of a SEC football game. Every noise, every movement, every light around her is amplified in her little mind. So of course she cannot sit still and eat; she's too overwhelmed by the world around her. It takes a lot of focus and organization to still sit and suck, swallow, and breathe all at the same time, but it is especially difficult when how you process the senses all around you is different from other babies.

As time went on we eventually learned that it helped sometimes if we fed her while he was tightly swaddled in a dark room with little distraction. Those techniques we learned help her feel "organized."  That term "organized" is used a lot by the occupational therapists who deal with sensory issues. Maggie has to feel "together" and "organized" to be able to perform a task like eating. You know how you feel when you step on something gross or slimy like a worm? You maybe scream or jump up and down or wiggle your shoulders trying to shake off that yucky feeling. It takes you a while to kind of get yourself together and be able to go on with whatever task you were doing. It is sort of similar with Maggie. She needs to get her body feeling together and organized so she can eat.

Now there are people out there who are skeptical of this whole disorder. They say it is all behavioral and you can't prove that someones nervous system is developed properly or not. Well, I might think that, too, if I didn't have my experience with Mary Lawrence. Yes, Mary Lawrence has was diagnosed with SPD about a year and a half ago. (I know you must be thinking what is wrong with her children?)

Children with sensory issues are either sensory-seeking or sensory-avoiding. Mary Lawrence was definitely sensory avoiding. In my "A Crying Wish" blog from October I talked about how Mary Lawrence cried all of the time as an infant. Every time I changed her diaper or put her in the bathtub or snapped her in the car seat, it was like I was torturing her. As she got into her toddler years, I noticed that textures were a big issue for her. She wouldn't touch finger paints or if her hands got sticky from eating syrup on her pancakes she would have a crying meltdown. Bath time every single night for nearly three years was a nightmare because transitions were so hard for. Going from being warmly clothed to being bare-skinned and exposed to colder air was sometimes unbearable for her. I was never been able to put lotion on her and only used diaper cream if absolutely necessary because she screamed so hard you might as well think I was rubbing hot coals on her.  Social situations were also tense.  Mary Lawrence would just cling to me and cry or want to stand a comfortable distance away from the party goers. It's not that she was shy, but sometimes the noise and the action was just too overwhelming for her. For a year and a half I was so disturbed and kept asking my doctor about it, but he just said it was because she was stubborn. But I knew in my heart that something else was going on.

When I finally learned about SPD, it all clicked. All of these sensations were too much for her. Someone likened it to how normal people hate the sound of fingernails going down a chalkboard. For Mary Lawrence, every day sensations were like that for her. On top of that, she was a delayed talker and wasn't able to communicate with me how she was feeling. So she was feeling totally out of control and completely frustrated for not being able to tell me about it on top of that.

At first I didn't want to tell anyone that Mary Lawrence had it because I didn't know what it meant. I thought it meant she might have a learning disorder or may not be like other children. But the more I learned about it, and the more I saw children at therapy who also had this, I realized it is better to talk about than not. Who knows -  maybe help another mother out there is going through something similar. You see the first two years of Mary Lawrence's life were much more difficult for me mentally that right now, because I felt I was doing something wrong as a mother to have a child acted so differently and cried all of the time. Moreover, I didn't know what I was dealing with like I do now. Doctors told me it was a discipline issue. Others told me it was "just a phase." Justin would often come home from work to see me in tears because Mary Lawrence cried most of the day and I had no idea why. It was a really hard time to say the least!

Thankfully Mary Lawrence had great therapists to help her learn how to manage her sensory issues and today she is almost like a different child. Two years ago I thought she was a difficult child that was rarely happy. Now I realize that her personality is actually very sweet and happy, but it was her sensory issues were preventing her from being the child she really was. I am so glad that we realized what it is was at a young age because unfortunately most people don't realize that their children have sensory issues until they are much older. And once children are in their school years it becomes harder to manage and can sometimes affect a child's learning potential.

As for Maggie, we are doing lots of exercises, infant massage, and joint compressions that make her feel more together and "organized." I asked when she will grow out of these issues and when we can begin to feed her as we watch t.v. or take her to a restaurant, but they don't know. It could be an issue that lasts throughout childhood or she may overcome her issues early on. But for now the most important thing is that she eats, and if low stimulation and complete darkness sometimes allow for her to have successful eating, then we will do it as long as we need to.

You can read more about sensory disorders at the link on my homepage. I definitely am not an expert; I just wanted to share our experience.


  1. HI Lee,
    I am so glad you figured this out now. I'm sure the therapist can give you good tips and insight and since you have gone through this with ML, you've had practice. I work(ed) with many children that were 7-9 and just figuring it out and it was really difficult. Keep up the good work and stay strong!


  2. just wanted to stop by and tell you i love you! i am so proud of you.

  3. Thank you so much for sharing!!! My oldest has what we believe are sensory issues although she has never been officially diagnosed with such. It is definitely something that is hard to explain! Chaotic and/or loud situations are absolute torture for her. She is very particular about her clothing - how it fits, what shows, which socks she wears, etc. You explained it all beautifully!

    Hang in there and know that you are being prayed for!