Grounded

Elijah has always been an exceedingly cautious child. He avoids the tops of stairs (I actually have always been very glad about this!), he will not walk on uneven surfaces or surfaces with unfamiliar textures, he does not like being moved out of a vertical position (upside down or sideways, for instance), he won't walk up or down stairs unless somebody is securely holding his hand and he avoids situations where he is not in control of what is happening with his body (this is why swim therapy was such a scary, awful experience for him).

I recently talked to Elijah's physical therapist about these things and she told me that he is the textbook definition of someone who has "gravitational insecurity," which is a sensory processing disorder involving the vestibular system. (You can read about gravitational insecurity here and here and here.) I have done a little bit of research on it, and without a doubt, it describes Elijah to a T.

He will not step onto playground equipment that other children are playing on because he doesn't know what they might do to make him fall or stumble or feel out of control. Most of the time he won't go on playground equipment even if no one else is around because I think he feels like bad things could still happen to him. A few months ago we were at the park and a little girl ran up the stairs of the playground equipment so she could go down the slide. Elijah yelled after her, "Be careful, little girl!" :)

His situational discomfort is something we have had to be really sensitive about. We have tried to find a good balance between encouraging him to try new/scary things while very much respecting his fears. When Elijah is forced into a situation that he is not physically comfortable with, he has a really tough time emotionally.

We are just getting him to ride his bike again after a long hiatus. He gets scared when he rides over certain parts of the sidewalk that are even slightly sloped or curved. During his biking hiatus, I would consistently ask him (in a non-pushy way) if he wanted to ride his bike. If he said "no," I would say "ok!" If he thought about it for a second, I would try to gently encourage him. For most of the summer, he would not get on his bike unless he stayed within a five-foot, FLAT radius in our garage. Just in the past week he has slowly started trying it again (very cautiously) on the sidewalk and I am so proud of him!

Because he has lived such a "grounded" life, I think his body (or brain) craves controlled movement. Swinging is a really good source of controlled movement for him and this is why we cannot get him off the swing once he is on it. His PT has given us other exercises to do with him that can satisfy this "craving" so we can try to keep his vestibular system as happy as possible (without scaring it).

This is just my personal opinion, but I also believe this is why he flaps his arms. It is a safe, controlled movement that is somehow satisfying an innate need.

I worry about what all of this means for him and whether or not this will cause even more anxiety for him than is already present in his little life. It already affects the way he plays and interacts with other kids because he constantly wants to make sure he is in control of his body and his surroundings.

One thing that does give me peace is to think about the progress he has made. A year ago, he wouldn't reach one inch out of his comfort zone for a toy. He screamed through every physical therapy session. He had no desire to walk. He has come a really long way, and I have faith that he will continue to make progress.

I have been doing a whole lot of thinking about everything I have written here. It has been one gigantic puzzle that I have been slowly piecing together for the past six months. I feel like I finally have a good grasp on this part of Elijah and like we are finally starting to understand the reasons for some of his actions/non-actions. Although, I do feel like there is still one hole in the puzzle. I am still trying to figure out what caused him to become so gravitationally insecure.

Why do sensory issues seem to follow a lot of children who have major medical conditions? Could some of Elijah's gravitational insecurities stem from his non-movement for the first fourteen months of his life (which was the result of having such low blood-oxygen saturations)? Lots of things yet to ponder and research!

Now when somebody questions some of Elijah's behaviors or asks why he is hesitant to try certain things or why we don't always push him to try things he is not comfortable with, I will point them to this post!