“Chynna,” she said. “I am so sorry. I just got Jaimie's results back from her sensory questionnaire. According to what I see here, Jaimie's form of SPD is quite severe. I would never have jumped right in the way I did if I'd seen these scores first. We'll do things a bit differently next time, okay? I promise we'll reach her.”
I was relieved she understood but also quite angry that we'd have to start all over again. Before hanging up, I said: “One thing that upsets Jaimie more than anything is touch. So we have to ask you to remember to use touch with her as a last resort. And don't hug her or ask her for hugs. When she's ready, she may do it on her own but if she feels pressured, she won't want anything to do with you.”
“Got it,” said Donna. “Thanks for telling me that. I'll remember.”
That evening, things weren't any better. Jaimie was out of sorts from the moment she got up from her nap until we put her in bed. She refused to eat her dinner, she threw food at Steve, she shoved Jordhan over twice and yelled right in her face, then she had a complete meltdown while we tried giving her a bath—she cried because the water was too high/warm/ wavy; the tap was dripping; she didn't want her hair washed or brushed and we had to force her to brush her teeth. After getting her out of the tub, kicking and screaming, it took me another 45 minutes just to get her diaper and pajamas on. I was so exhausted that I questioned whether the effort to help her was worth the results.
The tension in the house seemed to elevate once Jaimie started therapy. We knew the situation would get worse before it got better—maybe we just didn't think it could get worse. Steve and I fought more than we talked, which was not normal for us. We were a couple who'd always discussed everything because we'd believed that yelling solved nothing. When things were really testy with Jaimie, no one spoke at all. Nights like I described above were more common than not and it was painful.
Jaimie's SPD diagnosis made us better parents because we understood why she acted the way she did. It wasn't bad behavior causing her to act out—it was her reaction to how her surroundings made her feel. We stopped trying to discipline her and, instead, offered her comfort and helped her try to work through the tough times. But Jaimie's needs became our primary focus and we inadvertently paid less attention to other things—like ourselves, individually as well as a couple. And Jordhan was greatly affected by our situation too.
Jordhan didn't even seem upset by Jaimie's behavior anymore except for when Jaimie yelled right in her face. In fact, Jordhan started picking up on some of the things Jaimie was doing: she started throwing things, yelling, and hitting. I knew I had to keep trying with the therapy, even when things were tough.
It ripped us apart at the seams and I wasn't sure how much longer our little family could coast along this way. Something had to work.
It just had to.
~~~
The following week, on Jaimie's appointment day, Donna called first to ask Jaimie's permission to visit. Jaimie eased by the time we hung up the phone. Donna was much more cautious: She knocked on the door because the doorbell upset Jaimie; she wore dull colors; talked in a low quiet tone; and let Jaimie choose what she wanted to do.
Donna still worked with Jaimie the entire time, I could tell—slight touches here, occasional questions about feelings, telling Jaimie to say, “Help please.” whenever she got frustrated, and flourishing her with praise when she did something right. After a few weeks, Jaimie started trusting Donna and became more receptive to the therapy.
Jaimie responded to Donna in ways she'd never responded to anyone else, including me. Jaimie allowed this woman into her little world and I couldn't help but feel jealous. And maybe even a bit hurt. But the fact that Jaimie responded to someone was, for us, a miracle.
Maybe it was also because we all worked together as a family to make changes, not just making Jaimie change. We got a yoga ball to roll Jaimie on and we each took turns too. We got an air mattress for her to jump on for times she needed to stay on the move and we all laid on it when Jaimie had to do some of her sensory exercises. We set up a little pup tent for her where she put her favorite things—Tigger, her pillow, her favorite book and a little stereo—so she could hide somewhere for alone/quiet time. And we learned different activities Jaimie needed for her “Sensory Diet” to help her feel the world around her without always being afraid.
As Donna explained it to Steve and I, the Sensory Diet was more than what we tried giving Jaimie to eat. It involved various activities to calm, organize, or alert Jaimie's nervous system so she'd feel safer doing the basic things she should have been doing. Once we began seeing what we had to do for her as a diet—part of her basic needs—it all came naturally and made sense.
Some of our techniques involved: deep pressure massage, joint compressions, stretches, rolling/swaddling her in a blanket, getting her to snuggling/squeeze a foamy chair or body pillow, rocking/swaying her or getting her to rock herself in a rocking chair, tight or loose fitting clothing (depending on sensitivity level), weighted vests, soothing smells (like vanilla or lavender), sucking (straws, lollipops), blowing bubbles, squeeze/stress balls, pulling or pushing heavy objects, eating crunchy foods (apples, Cheerios, popcorn, granola) or just letting her spin or run.
Once we realized that knowing about SPD and understanding it were two different things, we became full participants in therapy. We finally had options to help her. We knew if she was “up” we had to give her activities helping her work through her overstimulation and when she was anxious, we had to do more calming activities. We knew when certain activities were a good choice and when others shouldn't be tried. It could still be confusing, of course, because she was different from one day, one hour, and even one minute to the next. But we at least had options.
Finally!
~~~
After a couple of months, Donna noted that very positive changes bloomed in Jaimie too. “I am so impressed with her eye contact,” she said. “It's not long but she looks at me when I talk to her. That's very positive and look at this,” Donna pointed to Jaimie's foot touching her leg, “that would never have happened a few months ago.”
Jaimie had finally learned that Donna's presence wasn't harmful and that she could be trusted. Jaimie allowed Donna to enter her world of strict routines, need for repetition, and, most importantly, no physical contact. Jaimie still struggled with eating, toileting, and personal hygiene (mostly teeth brushing, hair brushing, baths, getting dressed, and diaper changes) but we all learned ways to cope. Even with all the positive results, she was still having terrible fits.
“When you leave here, she just has a total meltdown,” I explained. “She's particularly bad on the day you leave and she doesn't start to come down until the day before you are coming back. Then it starts all over again.”
Donna sighed. “Your little girl is very good at holding it together when she has to. It seems she knows how to act in front of people, and then lets loose once they're gone. It's a compliment to you, as odd as that sounds. She feels safe with you and so feels that she can express her true feelings with you. I sure hope it isn't anything specific I'm doing. We'll have to really pay attention to her triggers so that we can call them when we see them and, hopefully, reduce the severity of her reactions later on.”
Jaimie enjoyed Donna's visits, despite her reactions. Perhaps Jaimie felt there was finally another person in her life besides me who understood her and liked her in spite of everything. Donna had patience with Jaimie and helped her express in words what had always been trapped in her mind.
Please, God, I prayed every day. Please allow this to continue.
~~~
December snuck up fast and Donna would be on holidays until the New Year. Jaimie decided she wanted to give Donna a Christmas card. She picked one out of the card box and drew lines and circles on it.
Jaimie smiled, showing me her artwork. “I give to Donna today?”
“Yes, you can give it to Donna,” I said.
Donna didn't do anything thera
peutic with Jaimie for their last visit of the year. She brought over a Water Doodle for Jaimie and Jordhan to try and a Christmas Wreath craft. Suddenly, Jaimie jumped up in her usual animated fashion and ran to the kitchen. We heard her stomp back and she waved Donna's card in her little hand.
“Dis for you, Donna,” Jaimie said.
“Oh, my,” Donna said. “This is for me? Did you draw this yourself?”
“Yup,” said Jaimie, pointing to herself.
“This is beautiful, Jaimie,” said Donna, then looked at me. “And what beautiful lines.” I nodded and gave her a wink. “Jaimie, I'm going to put this on my desk at work for everyone to see.”
Jaimie's big smile lit up her whole face and she let out a little giggle. “Yeah, on you desk.”
“Jaimie, I'd really like to give you a hug and kiss for this, can I do that?” Donna asked.
I looked over at Jaimie and her beautiful smile had faded. She sat on the couch, clutching her beanie Tigger, and whispered: “No. No hugs. No kiss. No.”
Her head bowed down as her lip quivered. My eyes stung with tears and Jordhan fidgeted in response to Jaimie's facial expression.
“Jaimie, it's okay if you don't want to,” Donna said. She tried to keep talking but I ushered her out to the front door.
“I'm really sorry,” she said with tears in her eyes. “I thought it would be okay to ask. Things were going so well…”
“I know. It's alright.” I said.
“Please call me and let me know if she explodes okay? I can help you through it.” I gave a weak smile.
When Jaimie heard the door shut, she wailed. I tried some of the techniques Donna showed me—squeezing her, rubbing her arms and legs, giving her Tigger to hold—but I only made the situation worse. My heart sank as Jaimie threw herself backwards onto the couch and screamed in her familiar coping strategy.
“I can't like it, Mama,” she screamed.
“I know, honey,” I said. “I know. Mama's here.”
Jordhan came over to offer Jaimie her Tigger but Jaimie grabbed it and hit her with it. Jordhan didn't cry but cowered behind me.
“It's okay, Jordy,” I said. “Jaimie just doesn't feel well. Here, let's go have a rest.”
After putting Jordhan in her bed, I went back down to get Jaimie so she could go to her own bed and release the rest of her pent up anger in privacy.
As I started to close the door, she said, “No, Mama. No leave. Stay with Jaimie.” My first instinct was to pick her back up but I knew I couldn't. I had to let her try to calm herself down.
“Mama can't stay with you right now, sweets,” I said softly. “But I'll be right downstairs if you need me. You try to calm down and have a rest. Then I'll come get you.” I closed the door as she continued screaming for me.
I don't know what made me turn the baby monitor on because I heard her just fine without it. Her screams echoed through the tiny machine and as I heard her head banging on her headboard—which she hadn't done in weeks—I closed my eyes and prayed.
~~~
Jaimie slowly regressed back to how she was even before we'd begun her therapy. Steve and I were devastated. We decided to end the sessions with Donna because they simply weren't helping anymore. Jaimie's reactions to the therapy got so severe that we spent more of her waking hours calming her down.
But before leaving Jaimie's life completely, Donna performed one last miracle for us: she completed a detailed report on Jaimie. In the report, she discussed Jaimie's SPD questionnaire results, the areas in which Jaimie was most affected and what therapy methods she had tried. Things may not have worked out with Donna but her fabulously detailed report helped get us an assessment with one of the best community programs in our city.
The most significant statement in Donna's report was where she said, “…the above mentioned sensory preferences may not be the only factors that influence Jaimie's behavior. Follow-up home visits, phone messages, and consultations with Mom and clinical observations suggest that there may be other influences that contribute to Jaimie's inability to function appropriately within her environment. I concur that further exploration and explanation is essential. Perhaps, then, Jaimie no longer needs to ask if anyone loves her.”
God bless Donna and the hard work she did to get Jaimie the help she needed. We'll always be grateful to her for what she did. Thanks to her, and her willingness to listen to us, we got further than we ever would have on our own.
Because of her efforts, we had a place continue with.
7
Chynna's Story:
Loving with a Musical Touch
As you already know, I noticed in the hospital shortly after giving birth to Jaimie that she fussed more when we, or the nurses, held her than when she was left in her crib. The nurses all assured me that most babies fuss when they're picked up at first because they aren't used to the sensations.
“It's normal, if you think about it,” one night a nurse said. “Imagine how you'd feel if you were in a nice, safe, quiet place only to be shot out into a loud, bright place with dozens of faces shoved in yours. I think I'd be stressed out too. Just give her some time.”
Just give her some time.
Those words became like our theme. Time was all we could give Jaimie, under the circumstances. I wanted to give cuddles, kisses, hugs, and love. I wanted to look into my daughter's beautiful blue eyes and feel her soft skin as I stroked her little cheeks or her strawberry blonde downy hair. But whenever I'd tried doing any of those normal signs of Mommy love, she turned away from me or cried.
Jaimie's extreme aversion to touch has been excruciating for me. I'm sure my pain is no more intense that Steve's—just different. Jaimie has never rejected me completely, as she did with him, so I can't even imagine feeling his pain. But I do understand what it's like to share my body with a baby: to feel her move, to see her restless form on the ultrasound, to hear her heartbeat, and to feel her exit my body as I pushed her into the world. And because of all of that, I understand the pain of having to love my child from a distance.
It's not that she didn't love us; we knew she did. She just wasn't able to express her love the way other kids do. When she was a baby, she let me kiss the top of her head. After a while, that wasn't tolerated anymore. So then I was permitted to kiss or hug one of her stuffed animals who'd give it to her for me. After she turned two, Jaimie hugged by sticking her head out and saying, “Hug.” And she only did it if she initiated it. Now, on days where Jaimie's sensitivity isn't too bad, she'll ask for me to hug her. The hardest part, though, is waiting for her to ask because if I initiate it, she'll reject me. So, I learned other ways to help comfort and share loving moments with Jaimie even though we can't touch.
One thing I am so grateful for is my gift of music. I may not have had a relationship with my own mother but she blessed me with many creative gifts, such as music, an appreciation for art and a love for writing. I started playing piano singing in choirs at the age of four and was lucky enough to have a piano around. My grandparents had a gorgeous, black-lacquered baby grand in their living room and Mom had her stand-up Steinway.
Mom was a sought-after piano teacher with an awesome reputation for her singing and other musical abilities. These are her incredible accomplishments that people often forget about because she also suffered with bipolar for which she refused to get treated and coped with it, using alcohol and drugs. It made living with her difficult and scary at times. But the one way you could relate to her was through music.
No matter what state of mind Mom was in, when we sat at the piano and played a duet, or sang together, or even threw a Beatles album on the stereo and reminisced, she seemed calmer. It was as though the music soothed the inner beast which she couldn't tame any other way. And I used it to calm myself and get me through some of the bad times too. That's why I used it with Jaimie too.
Whenever Jaimie woke up from a night fright or she melted down—especially from noise or too much activity—I'd put her Baby Einsteins casset
te on—preferably Baby Mozart—or a Beatles CD, and she calmed.
Even now, we use music to dance our sillies out, get rid of bad feelings, or to practice our calming exercises. At least during those times, I felt I was being her Mommy and I was helping her to feel better. I reminded myself of those times when I watched others working with and helping her.
I'll admit it. I had a real problem with accepting outside help at first. It wasn't because I was trying to control everything (as some people thought). It was because she was my daughter and I wanted to be the one to help her. And it hurt that I couldn't. After awhile, I knew if I didn't accept help from others, Jaimie would never thrive. And I couldn't live with that.
So I watched from the sidelines as other people watched her, assessed her, diagnosed her, prodded her mind, and reached her in ways Steve and I were never able to. Those experts—those strangers—came into our home (or we went to their offices) and taught Jaimie how to communicate, express herself, and cope. I watched as they earned her trust and even made her laugh, things we had to work our butts off to receive on a daily basis. I was jealous. And it stabbed me right in the heart every time.
But, bit-by-bit, positive changes in Jaimie's little personality blossomed as she slowly allowed us in too. Perhaps she finally realized that there were other people in her life—besides me, and then Donna—who understood how she felt inside and liked her in spite of it. And maybe she needed to see and feel that for herself before she was willing to let us in.
Most importantly, she saw there were things she was good at and she could do even if SPD lurked somewhere in the background. That's an awesome thing because SPD is often called a “hidden disorder.” You can't see what's wrong in a child's little face, or on their bodies, like with other disorders. The only thing that told people something was wrong with Jaimie was her overt behavior and her severe reactions to things. But I wanted people to see her for more than that.
Not Just Spirited Page 7
