Friday, April 19, 2013

Lupus and Sensory Processing Disorder Don't Mix

I was published on

I woke up this morning to the rambunctious sounds of my little men bouncing off the walls and into each other, with the under current tones of prodding reminders from my Knight in Shining Armor husband trying for all he is worth to keep the boys on some semblance of routine as they try to get out the door for school. I slept through the moment of waking.

It’s one of those mornings. The kind that requires medication and slow movement as I climb out of my soft cozy bed. And even then I’m in a fragile state.  Twenty minutes proves the ability to move around without too much ache. Unfortunately there is more to this flare up. I try to help with the boys. But this type of flare up just compounds to normal issues ten-fold. This one messes with my head. You see, I have Lupus. An autoimmune condition that randomly attacks organs of the body. Today it chose one of the vitals, my brain.

And this is how it plays out: Jakob, 8 years old and diagnosed with SPD is told for the millionth time to go brush his teeth. He has five minutes before he needs to be out the door. He walks into the bathroom as I walk out. I have just checked to make sure there is toothpaste and a toothbrush in the tin. Somehow I know that he isn’t going to see them. This is where my struggle started. I should have just gone in to ensure that he would see them and encourage him calmly to keep looking if he didn’t. He battles classic SPD where sometimes he just can’t see what’s right in front of him. Instead I chose to forfeit all reason and stew within my mind how frustrating “he” is and how this task should be so reasonable at his age… And amidst this three second train of thought he exits the bathroom asking where the toothbrush and toothpaste is. Enters Lupus Brain: Loud and with as much adolescent  irrationality as remotely possible, the raging mama bear responds “It’s in the tin on top of the toilet! Right where it is EVERY time you go into the bathroom! SeRiOuSLy…!” Naturally he gets defensive. Then reality clicks and I look at my poor husband, a look of sadness in his eyes.  With that I yell, ” I can’t handle this!”  -Uhh, yeah, ya think’!-  He takes over and I climb back in bed. Uggg!

Somehow I manage to get myself together enough to attempt to help again. They’re running late. This time I try to take on Caleb 4 year old. I need to get him grounded enough that he will be able to function at school. I go to the fridge and pull out the Bach Rescue Remedy drops. We sit on the couch together and I calmly remind him that he needs to find his space today. I remind him that he needs to find his teachers voice and follow what she says. It seems to be clicking. Surely the drops will help as well. He walks away calm enough that I have hope as I turn to help his older brother tie up those cursed shoes.  Again I allow myself to wonder why this has to be such a difficult task. Just as we are getting past the initial frustration and reluctance to even try, Caleb walks back in the room and without warning smacks Jakob up side the head. “ARE YOU SERIOUS!?”  Papa scoops up Caleb and takes him to his room until Jakob is out of the house.  With Jakob  curled up on the couch sobbing. Again I let myself think “how old is he!?” But at the same time I feel empathy and understanding of the situation and we work together to get his shoes on and tied.  Finally we get Jakob out the door.

Now it’s Caleb’s turn to leave for school. I gather his little ball of energy into my arms again and remind him of his space. Calmly I rub his Serenity doTerra essential oil on his back and behind his ears. With that he begins to kiss everything and everyone around him. “Do we kiss our friends Caleb?” I ask, knowing that his kisses weird out his classmates and sometimes even the teachers. “No.”  ”Who can we kiss Caleb?” “I can kiss you, Papa, or myself” comes his reply, in between kisses to the whiteboard on the wall. Lovely. “Caleb, if you feel the need to kiss something you can kiss your arm at school, ok?”  ”OK.”  With that I turn to Leif and tell him to let Caleb’s teachers know that Caleb’s big need lately has been to kiss things, and the trigger word for Caleb is, “arm.” They’ll know what I mean, I assure as they walk out the door.

Truly, this morning was one for the record!  FYI: Lupus and SPD Don’t Mix!!


Dawson Family said...

It seems to me that you and Karin and your guy's children were dealt the same deck of cards huh? I am so sorry for your and your children's struggles. I would say something like "hang in there" but I have no idea what you are going through so I will say, you are in prayers.

Harmony said...

So sorry that you are not feeling well. Every difficulty is magnified ten fold when you are sick and SPD sounds like it would be challenging on the best days. You are in our prayers too.

Related Posts Plugin for WordPress, Blogger...

Popular Posts