Mel’s Mundane Meanderings

My four-year-old son, Gabriel was recently diagnosed with a type of Sensory-Processing Disorder [SPD](also known as Sensory Integration Dysfunction [SID]) during a visit to an OT (Occupational Therapist).

We’ve known that something was amiss with Gabriel’s development for quite some time. At his two-month-old pediatrician appointment, the doctor measured his head and was alarmed at how much it had grown since his two-week-old visit. She sent us for a CAT scan, and apparently that was inconclusive, so we were sent for an MRI. The neurologist who gave us the results said that he had external hydrocephalus (or external hydrocephaly? I’ve never been able to figure out what the difference is) – which is an abnormally large collection of cerebrospinal fluid (CSF) found on the outside of the brain. The neurologist said that his head would continue to enlarge but that he would “grow into it” around school age (I guess he meant 6 or so?). He also mentioned that he could have motor delays.

I went back home and assumed everything would be fine with Gabriel. He was a handful from the time we brought him home until he was about 4 months old, thanks to acid reflux and a SEVERE gag reflex – he spit up constantly. When he was a bit older, Cheerios or anything solid or lumpy (like Stage 3 baby food, which contains small chunks of solid food) would make him projectile-vomit. He really couldn’t tolerate dry cereal or any finger foods until he was a year old. Today he is extremely picky and still has a bad gag reflex, which can be extremely frustrating. Certain textures seem to set him off. Anyway – all these years, I’ve been concerned, but have ultimately dismissed the food texture/gagging issues as pickiness/over-sensitivity. Everyone always told me that he’d grow out of it.

Another area I started becoming concerned with Gabriel about when he was a young baby was his language – or his lack thereof. He didn’t babble much at all. Maybe a coo here or there, but he definitely babbled less than other babies his age. As he grew, it became very clear that he was lagging behind his peers in their use of language. I would work with him, trying to drill words into his head, but he just seemed unable to make his mouth form the sounds. Everyone told me that he was a boy, and boys developed more slowly than girls. Even the pediatrician thought he’d grow out of it. But I kept having nagging doubts.

Another thing I’d noticed about Gabriel is that he hates getting his hands and feet messy. If his hands get dirty with food, paint, or markers, he will ball his fists up until he can wash his hands. He hates getting messy hands and will cry until they are clean.

He also hates having his hair washed or getting water in his face. I mean, HATES it and will scream like I’m trying to kill him. He also dislikes having his nails clipped and will cry every time I do it.

So, all of these things have been going on for awhile but I hadn’t linked them together in my head … I just thought he was a sensitive child. And possibly slow. At 4, he still has trouble getting dressed, eating with a spoon, and holding a pencil correctly. He had trouble riding a tricycle just a year ago (at 3), and still has trouble throwing balls. And the potty-training! He is just now finally potty-trained, at 4.

Believe it or not, all of these things are related to one another. The more I’ve read about SPD/SID, the brighter the light-bulb above my head has gotten. This is SPD/SID in a nutshell: his central nervous system doesn’t work correctly, so when one of his five senses (hearing, smell, touch, vision, taste) takes in a message, his brain may not interpret it correctly. This is the thing, though: no two kids with SPD/SID are alike. The symptoms of this syndrome vary greatly in intensity, as do the symptoms themselves.

An example – one child may have auditory processing disorder, one type of Sensory Processing Disorder. This child will hear verbal instructions but his/her brain will often not be able to interpret that message correctly or completely. Confusion ensues. Can you imagine how hard school would be for this child?

Other children have tactile defensiveness (Gabriel does, to a degree). Textures may bother them, and a gentle touch might feel like a punch. Their touch-receptors aren’t transmitting the correct message to the brain (or rather, the brain isn’t interpreting the transmitted message correctly … I’m not sure which is the case).

A third child may have problems with every single one of his senses, and it may severely hinder his everyday life.

Anyway, some children with SPD/SID have mild problems, others are severe. The results of these jumbled “sense”-messages can mean delays in gross and fine motor skills, inability to follow directions, social awkwardness and a host of other things.

We’re still making sense of all this. I’m scouring the Web and have just finished reading the ‘bible’ of SPD/SID, “The Out-of-Sync Child.” From what I’ve learned so far, this is how I think this syndrome is affecting Gabriel:

• His tactile sense is out-of-whack. I have just figured out that if he closes his eyes and you touch one of his body parts, he often can’t tell you where you just touched him. So, if his muscles and/or nerves aren’t properly communicating with his brain, that’s why he can’t seem to hold a pencil correctly, button his shirt by himself or touch his tongue to his nose. This ALSO explains his speech delay, since the muscles controlling his tongue are part of this whole problem.
• I also think he has some degree of auditory or visual-input processing issues. I say this because sometimes, he can’t follow the simplest directions.
• The “Out-of-Sync Child” book talks about kids that are over-responsive to stimuli, kids that are under-responsive to stimuli, and kids that are “sensory-seekers.” And apparently, kids can even be a combination of the above things. Gabriel must be, because he seems overly-sensitive about some things (dirty hands, hair washing, nail cutting, certain food textures), and under-sensitive to some stimuli (can’t feel how to grip pencil tightly, can’t button his own shirt, can’t follow some directions). But he’s also a sensory-seeker, because he constantly throws himself on the floor. Intentionally. I mean, he jumps up, and crashes onto the floor. Or climbs on the couch and crashes onto the floor. His occupational therapist said that this is normal and that he will continue to find ways to get tactile input/stimulation like this unless we provide him with lots of outlets for that energy. I asked the teacher if we should get him a jungle gym or a trampoline. She said, “both.” (anybody got $3,000 we can borrow? ha.)

Wow. My brain is exhausted.

The one thing I don’t know, though, is how/if the external hydrocephalus is connected to all of this.

But back to the symptoms – I didn’t give you an all-encompassing list of Gabriel’s problems, because this blog post is long enough already. Suffice it to say, I’ve done my homework and I am convinced this diagnosis is correct. If you are a parent of a child with a speech delay, SPD/SID or external hydrocephalus (or you suspect that your child may have these types of issues), email me and we can talk at length. For more information:

SENSORY PROCESSING DISORDER RESOURCES (I’ll add more soon!)

List of books and videos about SPD

Signs and Symptoms of Sensory Processing Disorder/Sensory Integration Disorder

Sensory Processing Disorder Foundation

Sensory Integration Education and Research Foundation

Sensory Processing Disorder Resource Center

Tactile Defensiveness/Sensory Defensiveness

Proprioceptive Dysfunction

Oral Defensiveness / Picky Eating

Update: For all the blog entries relating to Gabriel’s external hydrocephaly, SPD/SID, Speech delay, etc. click on Gabriel’s Journey.