My Son, the Iceberg

Copyright@L. Kilion; This article may be printed and shared.

What you see on the surface is not at all the person my son truly is. He fights an invisible illness to which many are blind. But what many people also miss is the strength and perseverance that lie within him.

My son was placed on homebound status at school last November. He is immune deficient and suffers from PANDAS (autoimmune psychiatric disorder) as well as Lyme Disease. He shows a pattern of faring better after receiving an IVIG, then returning to school, only to be bombarded with an army of germs. This leads to a renewal of symptoms plus heaps of stress which in turn leads to more symptoms and school refusal. 

My son's district has about 30 students in each class. But even with a class of 15, an educator would find it challenging to help a child like my son. I know. When he was not this sick, or when we just didn't know better, I took my child to my own school with me. Even then, he had needs: difficulty using scissors (a skill that waxes and wanes depending upon his health,) difficulty tearing paper, challenges with visual/spatial issues (even with fun, creative, artsy projects,) mental fatigue. 

If I were the teacher of a child with PANDAS, how would I view him? What would I see?

I might not know this child had any huge issues if I just saw him occasionally or had just met him. Even family members, upon seeing my boy on a good day, have trouble believing that he's truly as ill as I say. This kind of thinking does a lot of damage, not only to me, who is fighting for his health, but to my son as well, who shows a strength of character that few people will ever possess. Give the kid some credit for being a warrior! 

My son, like all people, has good days and bad days. But his days are so extreme, that he really is like a different person from one day to the next. This is what I might see:

Good Day, Kid A:  

If I were his teacher now, this is what I'd see: Kid A is a sweet, eager-to-please, handsome boy with big brown eyes. On a good day, I'd see that he's a good reader and likes to write. On a good day, I'd see that he struggles with math although he does recall many of his multiplication tables. On a good day, I'd see that he has some challenges with word recall and verbal expressive language. I'd see a child who gets along well with others, who is liked by his classmates, who is responsive to suggestions from me. I'd see that he has many ideas and can take on leadership roles. That he has a sense of humor. That his ideas are above grade-level and that he's a deep thinker. I'd see that by mid-morning, he's tired, and by lunchtime, he's mentally done. And physically hurting, although that wouldn't stop him from going to P.E.

So-So Day, Kid B:
I'd see a child who isn't paying attention much, but in a quiet way. So I might put a hand on his shoulder if he wasn't averse to that. Or ask him about his project. I'd tell him I would check back with him in a couple of minutes. I'd modify his work, see if he needs assistance. I might notice that when working in a group, he's the clown and isn't really doing his share of the work. I would see that his note-taking ability is extremely limited and that his hand-writing looks pained. That he takes many breaks from class. That he can't recall math facts. That he rubs his eyes a lot, which twitch, especially in the afternoon.

But what I wouldn't see on a so-so day is even more important. This child is an iceberg, and an educator just sees the prettiest part. What is below the peak of the giant iceberg is another story. This child is struggling to appear normal on the outside. He's trying to hold back his tics all day and this effort distracts him from academics. What I wouldn't see is that he has OCD and feels totally uncomfortable sitting in his chair with his group, because he must sit with his back to the wall. But because he knows that these OCD thoughts are not "normal," he won't tell anyone. What I don't know is how sad he is and how he's marbleizing his face so that he doesn't cry. What I don't know is that he hasn't slept well for nights. That he has separation anxiety at night and even though he's back to sleeping in his room after being in his parents' for many weeks, he is miserable. What I don't know is that he doesn't eat well; his sensation issues turn him off to many foods. What I don't know is how envious he is of his sister, his peers. How he wants to very much to be the regular kid he pretends to be.

What I might notice is that he hasn't learned that much today.

Bad Day, KID C:
If this child was forced to come to school, this day--and the only way to get him to school is to physically carry him out of the house--I'd see him slapping his arms and legs because slapping himself is a compulsion or tic. I'd hear him yelling out when the sensations, even regular classroom noise, gets too much for him. 

And when I rush to his side (remember, I'm a regular classroom teacher--I can't act like a parent and hold him, rock him in front of the class or privately,) his stress level increases and he suddenly has throat-clearing tics. On a bad day, he gets very angry with another student and declares that this friendship is over, or even threatens him verbally. On a super bad day, he lunges at another student. On a super duper bad day, he leaps from desk to desk and hisses at me. And afterward, cries from remorse.

And of course, on a bad day, this kid can't learn academic subjects.

The only thing he can learn is whether or not he can trust me and the educational system.

I want my child educated. I want him to have every opportunity in life imaginable. It's enough that PANDAS and Lyme have robbed so much of his childhood. He dreams of going to Hawaii and studying to become a marine biologist. Dreams change. I know that. But we still need to believe in him as a student. We need to be able to find a way to meet him where he is and help him find the path to education while his doctors help him along the road to health. I just don't know that our educational system is set up for this. And as a regular classroom teacher, I'm in it. 

Comments

[Joan]

This so perfectly describes the challenges of PANDAS. Thank you. I am sharing this because it is hard to describe to others who mostly see Kid A. KidB makes an appearance more often but Kid C is mostly at home and in private-my son doesn't go out on days like that.