Finding Balance

One of the things about raising a child with complex issues is that you are constantly questioning everything. You question your judgment, your thoughts, your feelings. Everything.

It is never easy accepting that something could be wrong with your child as acceptance would only confirm these fears. But yet you don't want to ignore something either because doing so could have disastrous consequences. It is about finding a middle ground, somewhere between neurotic and dismissive. However, this is not as easy as it sounds.

I have talked many times about Giovanni's issues with sensory processing. Sounds, textures, lighting, all of these things have the ability to switch this internal switch, causing him to meltdown into this out of control tiny human. The only way I can think to describe it is as an invisible taser. Imagine constantly being hit by this taser when you least expect it. The most excruciating, unbearable sensation that you can imagine. The only thing that you can do is either to try to escape from it, or drop to the floor and scream, praying that it will stop. The one caveat is that no one else can see this taser. These awful things are happening to you, yet no one else can see them happening.

There have been many things that we have chalked up to this, including some bizarre behaviors that we can't otherwise explain. Giovanni has these moments where he all of a sudden loses touch with reality. He does not know who anyone is, cannot respond or interact, does not make eye contact, and rolls on the floor moaning and shrieking. We never considered it seizure activity because it doesn't fit the mold. There is no eye deviation, no unresponsiveness, no staring.

A few weeks ago our Speech Pathologist mentioned something to me that got me thinking, but not enough to freak out. Giovanni has started this new thing where he yells and runs away every time a therapist comes to our house. Considering he gets therapy 8 times a week, I can't say I blame him. Anyway, on this particular day he was grabbing onto me screaming, yet he would not let me hold him. There was nothing I could do to comfort him. It was like he didn’t know I was his mom. This went on for a good 5 minutes, when all of a sudden he looked at the therapist, calmed down, and ran over and gave her a hug. She said that it was like he didn't know it was her until that instant.

Fast forward to today.

During therapy with his special educator he did something very similar. He was just about to play his music for her when all of a sudden he started moaning and crying, rolling on the floor. He would not make any eye contact, wouldn't respond to verbal interruption, and would not let you touch him. The whole episode last 5 minutes or so, until he rolled into fetal position and laid quietly for a minute or so. Then he sat up like nothing ever happened, and continued on with his music. The therapist said that what we are seeing is definitely something neurological. Seizure? Abnormal brain activity? Not sure.

We have a message into the neurologist, as we don’t want to ignore something that needs attention. It is so hard knowing when to react and when to wait it out. God forbid you make the wrong decision. I could never live with that.