Wednesday, November 4, 2015

I'm A Believer

Monday at 3 o'clock  I suddenly believed. I believed from the core of my soul. Prior to 3 o'clock I would have said I believed and would have thrown information at you in order to make you believe as well. But deep inside where you hide the things you don't want to think about ....I doubted. I doubted that Sensory Processing Disorder was real. I secretly wondered if one day we were going to find out it was all made up, like immunizations and autism.  I doubted myself and my ability to pick quality doctors who would tell me the truth. I still believed that it was my parenting that had messed John up. I believed that it was me that had screwed my own son up so badly he has four separate diagnoses.

And then 3 o'clock  happened.

We needed to leave for John's OT appointment and he was still in his pajamas.  I told John to get dressed in his clean clothes and I walked away.

 He came screaming down the stairs, red faced, hot tears wetting his shirt collar. He was jumping in the air, flopping like a fish out of water, spinning and grabbing, yelling something over and over. Finally I understood: "It hurts."

He was out of control. He would jump and his entire body would arch backwards as his feet left the floor. He was clawing at the inside of his legs and shaking uncontrollably. He started to hit himself in the head. He started pulling on his penis. His face was pulled into a grotesque mask of pain.
 I started trying to get the clothes off of him. In my head I was a frantic fool, repeating,  "Off Off Off. Just get it off off off why doesn't he just tear it all off? Where are the scissors? Can I rip the pants? OFF." Finally I was able get my arms around him and squeeze him long enough that he could take a breath and tell me that he couldn't take the clothes off, because he had to go see Miss Beth, his OT. I suggested he wear his pajama's. That was not acceptable and everything began again.

At some point I just sat back and looked at him. I looked at my perfect and wonderful child and saw the pain he was in.  I saw him pull his beautiful blonde hair. Leave welts on his rosy skin. See his collar turn deep blue form his tears. I saw him curl up in the fetal position on the dirty floor and just sob.  This was my baby. The baby I helped and soothed through feeding therapy, through asthma and pneumonia. The baby I could soothe then. But could not now. This was pure pain, all centering in him, in his body, in his nervous system. This is was John's own personal pain.

And I couldn't fix it. Taking the clothes off meant we weren't going to see Miss Beth. Keeping the clothes on meant we weren't going to see Miss Beth. We couldn't win. I called the office and tried to tell them we'd be late, with John yelling in the background. I started to cry. Here I was, my child needing to come to them - for real- and we can't get there because we are so beyond help. I talked with Miss Beth and she had some suggestions. She talked low and calm to me, asked me to go to a dark room, sit on the floor with him, squeeze as he would tolerate,  and would it be helpful if she wore her pajama's? I already think the world of this young lady, but my respect for her grew ten fold.

I was doing everything right. Nothing I was doing was making it worse or causing it. We were in a dark room, I was barely speaking and when I did it was a whisper. I was holding him tight when he pressed against me and releasing him when he leaned away. I was pounding him on the back the way he likes and offered the swing, weighted blanket, trampoline and chewy. I WAS DOING EVERYTHING AND STILL NOTHING WAS WORKING. This wasn't poor parenting. This was my little boy who desperately wanted to see his OT, but his pants were setting his legs on fire. He was so distraught that he began pulling on his penis; of which he has no memory. This was my child who's legs were on fire but he couldn't wear his pajama's out because that is embarrassing. He couldn't wear shorts because it's now fall.
THIS is not poor parenting.
THIS is not my child wanting control.
THIS is not my child being difficult.

THIS is my child with a Sensory Processing Disorder, along with ADHD, anxiety and Dyslexia.
THIS is what he looks like. THIS is how he feels. THIS is real.
BUT. This isn't WHO he is.
He is the child who suffered on the floor, yet dragged himself to the van and made sure we got to see Miss Beth. She greeted us with warm smiles and soft voice and took us to the smallest room where she knew John would feel most comfortable, even though he normally prefers the largest. She had the lights low and was ready. He was subdued, she respected that. She provided suggestions and helped him into equipment that wrapped against him and gave his body the input it needed. He is the child who pushed through and climbed ladders he couldn't in May. He is the child who dashed up the slide without one misstep. He is the child who designed a series of traps, then maneuvered himself through it in a way he could not have done 3 months ago. He is the child who craves this sensory time he has with Miss Beth and somehow pushed the pain aside long enough to see her, play with here and then come home to quickly shed the painful clothes. Miss Beth did her job. But to me, as she helped my son, it was so very  much more

It was a terrible day. Worse than any day where he 'just' rages. I saw him in pain. Undiluted, uncontrolled pain. And I couldnt' fix it.
And THAT is the worse day.
(And if you are wondering about this OT angel, Miss Beth, she works at All The Difference here in Wilmington. It's the only facility like it in the area and a gift from God)