Jaimie's breathing had gotten faster. “No. Can't do it. My bum tickles. My need to go home.” As usual, I didn't understand what to do to help her.
“Jaimie, please…,” was all I'd gotten out before Jaimie covered her ears, threw herself on the ground and screamed. Then Jordhan joined her. Angry tears filled my eyes—partly because it had taken so long to get ready and then we had to go back already and partly because I simply had no clue what was wrong.
I grabbed Jaimie's arm. She made her body go limp like a rag doll. It had taken all my strength to hold her so she wouldn't whack her head on the cement. I yanked her to a standing position then dragged her back to the house kicking and screaming as Jordhan screamed in stereo from my hip.
I'd unlocked the door continuing to drag Jaimie back into the house. I put both girls down, and then decided who to help first. Both girls screamed at the top of their lungs: one reaching out desperately to me while the other lay on her back kicking the floor and pulling her hair out.
“Wipe my bum, Mama. Make itch stop!” Jaimie screamed.
I took Jordhan's shoes and jacket off so she wouldn't overheat while I dealt with Jaimie. Then I approached Jaimie slowly, telling her exactly what I had to do: “Mama has to take off your jacket and shoes, Jaimie. Then I can stop the itch, okay?”
“No! No touch me!” she shrieked. She'd never talked to me like that before. I was frightened.
“Mama has to touch you if you want me to stop the itch, Jaimie. So, just…” I was silenced. Jaimie kicked me in the face. A metallic flavor flooded my mouth. I wiped my mouth on the back of my hand, which left behind a trail of blood.
“Noooooooooooo! No touch me!” Jaimie screamed again. Poor Jordhan was so upset by the whole scene her cries were almost silent.
I'd forced Jaimie to face me by grabbing her arms and I said, over her screaming, “Calm down, Jaimie. Just tell me what you want! Why can't you just tell me?”
My actions only made things even worse as I'd done the forbidden: I'd touched her. I'd managed to get her shoes and pants off before trying to take off her diaper. No sooner had I gotten it off, Jaimie stood up and urinated on the carpet.
“Jaimie!” I yelled. “There is no excuse for that!”
“AHHH!!” Jaimie threw herself backwards; then repeatedly whacked her head against the floor. I scrambled, searching for something to cushion the blows as the hits got harder and harder.
“Ah…ah…ah….ah…” she grunted with each strike.
I'd found a towel close by and shoved it under Jaimie's head. She let out one long scream as though she'd been exercised and the demon left her body. Then she just lay on her back, staring at the ceiling.
In that moment, I saw things from the outside for the first time. There was Jaimie, with her hair soaked and matted to her head from sweat, her tears and her nose running all over her face; Jordhan, screamed herself almost to sleep, and cowered in the corner of the room; and me, nursing a fat, cut lip and urine on me and the floor.
It was clear that Jaimie was not just a spirited little girl and something needed to be done.
No more procrastination.
~~~
After getting both girls down for a needed nap, I sat with my hands wrapped around a nice hot mug of chamomile tea waiting for Steve's daily after-lunch phone call. My lip stung, my eyes burned and my heart ached.
I interrupted the phone's first ring. “Hello?”
“Hey gorgeous. How's it…” was all I let Steve get out before I burst into tears again. I recounted what happened, then waited for his response.
“Hello? Are you still there?” I sniffed. I was sniffed at in response.
He spoke in a loud whisper. “Oh my God, hun. What are we going to do?”
“We need to help her, Steve,” I said. “And we need to do it now. No more waiting. No more excuses.”
“Call the doctor,” he said. “I'll get the time off work.”
As I dialed Dr. Morriarty's number, I remembered the urine drying into our carpet and I still hadn't changed my clothes.
Nothing else seemed to matter.
~~~
I got an emergency appointment with Jaimie's pediatrician a few days later. Steve and I shared our concerns but we couldn't look at each other—our tears would have made it impossible to get the story out. I told the doctor what had happened a few days before and he finally agreed Jaimie needed help.
“Sounds like she has a bit of a behavioral problem,” he said, writing notes on Jaimie's chart.
That was it. I'd had it. “A bit of a behavioral problem?” I said. “Getting angry because I won't let her have candy or a toy is a ‘bit of a behavioral problem’. Kicking me in the face, hitting her head on the floor until she practically passes out, refusing to get dressed because tags hurt her, not wanting us to touch her—these are more than just behavioral problems. And just look at her”—I gestured to my lap as Jaimie sat with her back to everyone, cling to me— “this is how I spend most of my damn day.”
Steve squeezed my hand. The doctor stared at me for a second, and then cleared his throat. “I'm so sorry. Let's get you some contacts to call, okay?”
“Thank you,” I whispered.
I filled out information forms for programs Jaimie could get into and the nurse gave me a phone number for an Edmonton Early Intervention Program (EEIP).
“You poor thing,” she said. “This must be so hard on you.” She squeezed my arm, assuring me she'd fax off the papers to the facility that day and someone would contact me soon.
I hoped ‘soon’ was the next day.
~~~
An early Intervention Program Coordinator from the EEIP (Edmonton Early Intervention Program), named Maria, came over the following week. It was just Jaimie, Jordhan, and me because Steve couldn't get out of work. It marked the first of many meetings we'd have on our road to finding Jaimie help.
How it worked was that a coordinator was usually sent to assess the severity of the situation; then a recommendation for treatment was made. Maria asked me what seemed like hundreds of questions. I didn't mind though; it was such a relief having someone listen to me. After I told her about Jaimie's struggles with eating and going to the bathroom, she stopped writing in her notebook and said, “Poor Jaimie…to struggle even with the basic functions of life. Why didn't you come to us sooner?”
I broke down. “Because I didn't know about you. Plus, we needed a doctor's referral and he didn't believe there was a problem until recently.”
She shook her head. “Did he know Jaimie barely eats anything and, if she is given food, it has to be set a specific way on her plate?”
I nodded.
“Wow,” she said, rolling her eyes. “Unfortunately we hear that a lot. If something can't be reduced to a medical explanation, it's psychological. Don't worry. We know about Jaimie now and we'll do the best we can to help her.”
After we chatted a bit longer, she told me she wanted to set up another meeting with one of their top occupational therapists, (OT) Donna Gravelle. We set up something for the following week to give Jaimie some time in between visits.
On the OT appointment day, Jaimie ran to the door to see Maria. But when Jaimie saw Maria wasn't alone, she ran back to the living room. After introductions were made and Donna played with Jordhan for a bit, she entered the living room to introduce herself to Jaimie. Maria observed the interactions from the couch and I stationed myself on the floor with Jordhan where Jaimie could still see me.
“Hi Jaimie,” Donna said. Jaimie ignored her. “I'm going to do a few things with Jaimie to see how she reacts, okay?” Donna whispered to me. “I won't do anything that hurts her, I promise. I just want to see her tolerance level.”
“That's fine,” I said. Donna sat beside Jaimie on the floor, who played with her trains, talking to herself. Donna brushed her hand against Jaimie's. Jaimie withdrew her hand but didn't cry. There was no break in Jaimie's talking or playing—it was as though none of the rest of us were there.
Donna pointed a few things out to me as she worked with Jaimie. “Watch this,” she said moving closer to Jaimie. Jaimie talked faster and her movements were more rapid the closer Donna got to her. As Donna moved further away, Jaimie's speech slowed down and she seemed more relaxed.
“Did you see that?” Donna asked.
Jaimie's reactions were more than familiar. “Yeah,” I said. “She's been doing that since she was a baby. It's gotten worse since Jordhan has become mobile and tries to go over to try playing with her. What does it mean?”
“I can't make a solid diagnosis right now but I have a suspicion of what's going on here,” she said. “I'm positive Jaimie has Sensory Processing Disorder.” (Note: At the time of Jaimie's diagnosis, SPD was called Sensory Integration Dysfunction or SID. Because of the confusion between SID and SIDS, it became Sensory Processing Disorder or SPD. This name change also symbolizes the recognition that it's an actual disorder effecting overall daily functioning and not just an illness or dysfunction.)
Those seven words punched me right in the stomach. The demon inside Jaimie—who'd lived with us for the past two-and-a-half years, and I fought with every day—now had a name.
Now we can fight you fair and square!
The only thing was I had no idea what SPD was. “What is this SPD? Is it a form of autism?”
“No,” Donna said, “Although autistic children do have sensory sensitivities. The best way to explain it to you is like this: For most of us, sensory integration is normal. That's when our brain takes in information from around us, processes it then sends messages to the body on what to do with that information. Jaimie, here, doesn't have this sensory integration. When her brain takes in the information, it gets ‘scrambled’ and it doesn't understand how to read those messages. Because it can't read them, it doesn't know what to do with them, which causes confusion. And that's why Jaimie breaks down.”
I supposed I looked totally confused because Donna laughed and said, “I know it's a lot to understand. All you need to know is that it's my job to help Jaimie learn how to cope with her SPD and to help her to learn the tools she needs to be able to do things that other kids enjoy…just in a new way.”
I eased. “Will this go away?”
“No,” Donna said. “She'll always have SPD. But it seems to be the worst during these preschool years when the communication skills aren't quite developed. Once she learns how to communicate better, things will feel safer to her and she most likely won't break down as much.”
She handed me a book called, The Out Of Sync Child: Recognizing and Coping with Sensory Integration Dysfunction, by Carol Stock Kranowitz. “This will give you a lot of the answers you need. Try to read it over before the next time I come and if you have any more questions then, we'll have a chat. Never be afraid to ask me anything, okay? That's what I'm here for.”
Donna cupped my hand in between hers. “Now, I'd like to arrange sessions with Jaimie to see if we can figure out some roots to Jaimie's struggles. I'll see if I can help bring everyone some peace. Especially to your precious jewel.”
I smiled. At least we were on the right path now.
“Will your husband be joining us for the sessions?” she asked, taking out her appointment book.
“No, unfortunately not,” I said. “He'd love to participate but he can't take extra time off work. I think he feels more helpless than I do. Jaimie wants nothing to do with her Daddy. He jokes about it but…I can tell he's deeply hurt.”
Donna looked at me over her librarian-type glasses. “I'll bring extra information along with me which you can pass along to him then. That way he'll at least feel he's a part of it, okay? Oh! And we'll have to get you to fill out these questionnaires. These will just give us an idea of Jaimie's tolerance level with various sensory activities. The final score will rate the severity of her SPD. You and I can go over the results next time?”
“Thank you,” I said.
I just hoped we were doing the right thing.
6
One Step Forward,
Two Steps Back…
Donna began weekly visits with Jaimie, who had no interest in this strange woman invading her turf. She made Donna's first few visits very difficult.
When Donna arrived on her first day, Jaimie sat coloring at the kitchen table.
“Hi Jaimie,” Donna said. “Is it okay if I sit beside you?” Jaimie nodded, keeping her eyes glued to her paper. She repeatedly drew circles, gripping her crayon so hard that her knuckles turned white.
“Do you want us here or in the living room?” I asked as Jordhan squirmed to be put down.
“You can carry on like usual,” Donna said. “It may be good to see how she is with Jordhan here too.”
Donna turned her attention back to Jaimie. “Those are some nice circles, Jaimie.” Jaimie continued ignoring her.
Donna tried everything she could to get Jaimie to respond to her. With every question Donna asked, Jaimie ground her crayon into her paper even harder. Donna looked at me and nodded—just as she did with the “close to and far from” experiment on her first meeting—then grabbed Jaimie's hand and forced her to draw lines instead. Jaimie froze but she didn't do anything. No screaming, yelling or throwing herself off the chair. She just allowed Donna to move her hand around the paper. Then Jaimie handed Donna a crayon of her own.
“I like circles too, Jaimie,” Donna said. “But lines are fun too. See?”
Jaimie looked at the paper where Donna drew her lines then drew circles on top of it.
Donna muffled a giggle. “Okay, let's try something else.” She reached into her huge bag of fun and pulled out a bunch of craft items like feathers, pompoms, glue, cut out pieces of paper, and safety scissors. “We're going to make a picture of a turkey that you can show your Daddy.”
Jaimie seemed interested in the brightly colored pompoms but when she touched the feathers she pulled her hands back. Donna grabbed Jaimie's hands and forced her to create a picture. Donna wouldn't let Jaimie do anything the way she liked to, causing her to get more and more agitated every passing minute. To make things worse, Donna couldn't understand Jaimie's speech so I had to interpret. Jaimie tried telling Donna she needed to wash her hands.
“Mama, my hands need clean,” Jaimie said, her voice trembling.
Donna looked at me with a frown and I told her Jaimie wanted her hands washed. “Not yet, Jaimie. When we're done.” the OT said.
“No, now,” said Jaimie.
“No,” Donna said firmly. “Not now. When we're finished.”
I chewed the inside of my lip as Jordhan studied Jamie's face; then started whining. “Don't worry,” I whispered to Jordhan. “Jaimie's fine.”
I knew what Donna was trying to do and I respected it. She wanted to try helping Jaimie to experience different sensations and not be scared of them. It was called Sensory Integration Therapy. I'd read about it in The Out Of Sync Child she'd given me on her first visit.
From what I understood, different sensations were supposed to be introduced through play so the child learned to associate “feel good” feelings with the sensation instead of fear. Once that happens, the therapist can then teach the child a better coping tool to deal with the sensation. And sometimes, if the child seemed more resistant, the therapist tried incorporating those sensations into activities the child already enjoyed…to make it easier.
So, since two of Jaimie's favorite activities were drawing and crafting, Donna tried using those activities in her therapy approach. And, even though I knew what Donna was trying to do, and I understood the reasoning behind it, I knew what Jaimie's reaction would be so I tried making things better.
I sat Jordhan on my hip and scooted out to the living room for the wipes so Jaimie's could clean her hands. When we came back Jaimie seemed a bit more relaxed because Donna had allowed her to draw circles on her picture.
“Jaimie, I'm going to talk to your Mom now, okay?” Donna said. Jaimie nodded without looking at her.
; Donna turned back to me. “Okay. I've stirred up her little world today. I introduced many things and did tasks using all of her senses. How do you think she's doing right now?”
I looked at Jaimie drawing her circles. “I won't know until later,” I said. But I already knew I was in trouble.
“I'm going to call you later on and see how things go, okay?” With that Donna packed up here stuff, said goodbye to Jaimie and left.
Jaimie heard the front door shut and sat still. “She go?” she asked.
“Yes, Donna's gone,” I said. “Do you like Donna?”
“NO! I can't like her!” Jaimie screeched, throwing her crayons. Jordhan's lip quivered then she let out a muffled cry. Jaimie covered her ears and screamed, “‘Top! ‘Top it Dordee.” Jordhan cried harder. I closed my eyes, took a deep breath, and then left Jaimie screaming in the kitchen to put Jordhan down for a nap.
When I got back down stairs, I found that Jaimie had ripped up the turkey picture, broke every one of her crayons, and laid face down in the middle of the mess crying. When I tried rolling her over to pick her up, she rammed her head into the floor.
I gathered her in my arms. “Jaimie, honey,” I said. “You need a rest. I promise this will never happen this way again. Come to Mama.”
She turned to me with blood trickling from her nose. She touched me with her head then said, “Okay, Mama.”
Jaimie let me clean her face—sporting a nice shiner and fat lip—and put her into her bed. I was livid. I phoned Donna, telling her we needed to change our strategy.
“You need to gain Jaimie's trust.” I said. “Look, I don't want to tell you how to do your job. You're the expert with this SPD thing. But I'm the expert with my daughter and I know what works for her. You can't come in here and take away her routine—it's the only thing that keeps her calm. Isn't there a way to work within her routine and slowly change things as she feels safe? If you don't work more slowly with her, she'll reject you completely then we'll be back where we started.”
Not Just Spirited Page 6