Not Just Spirited Page 5

  As she'd kicked her feet at him, screaming, “No! Want Mama!” I remember walking faster toward them, then running as fast as a woman could at thirty-five weeks pregnant. By the time I'd gotten to her, she was too far gone for me to calm. There we all were in the middle of the field, Jaimie screeching on her back with her legs and arms flailing; Steve staring at her with his hands on his hips; and me on my knees waiting for an opening to try to get her to listen to me. So I did the only thing I knew that worked: I sang to her Paul McCartney's classic song “Blackbird.”

  She didn't calm down completely but I saw in her eyes that she'd heard me. When that didn't work, I sang Wiggles songs, hummed Mozart; heck, I even threw in a Michael Bublé song or two. After about half-an hour, she calmed enough for us to take her home and put down for a rest. Once I put her to bed, I laid down too. I didn't tell Steve this but after my sprint in the field, I started experiencing cramps and false labor (and continued to until I went into full labor a couple of weeks later.)

  After that incident, I silently promised two things: That I'd always be there for Jaimie, even if I had to give up my own things; and second, if I couldn't figure out what was wrong with her, I'd do what I could to calm her. And boy, did we need to do a lot of calming over the next few weeks.

  We tried our best to prepare Jaimie for the arrival of the new baby. We did all the regular things they'd recommended in the parenting/baby magazines. We tried getting her to choose small items for the baby's crib; put her in charge of choosing the outfit to bring the baby home in; and even helping Daddy put together the baby's bed. But, seriously, you can only prepare a not-even-two-year old so much. How much did she truly understand?

  All Jaimie knew was that whatever was in my tummy prevented me from doing things the way I used to. And she didn't like it. Whenever the baby moved in my tummy, we tried preparing her by saying things like, “Look Jaimie! Baby is moving. Do you want to feel it?”

  But whenever we'd put her hand on my tummy to feel the baby move, Jaimie jumped then smacked my belly. She didn't understand. She was just reacting to the weird feeling of a something squirming that she couldn't see—I knew that. But if she reacted that intensely to the baby when it wasn't even with us yet, how was she going to react to a newborn's cries? Or to dirty diapers? Or to the fact that Mama would need to pay a lot of attention to the new baby? The entire situation ripped me apart every day.

  I never even got to enjoy being pregnant. I was riddled with guilt: about being pregnant; about not being able to be the Mama I'd been before I got pregnant; about not being there for Jaimie when I'd had to go into the hospital to give birth; even about bringing home the new baby into our chaotic world. Heck, I even felt guilty bonding with the new baby. Those thoughts simmered inside of me throughout the entire pregnancy. Despite everything, Jordhan, our second daughter, arrived on October 1, 2004. And it was during Jordhan's birth that I was reminded there were other things I needed to pay attention to.

  I thought about Jaimie the entire time I was in the delivery room. I left for the hospital in the middle of the night—right around when Jaimie woke up with a night terror—when my contractions got so bad I wasn't able to stand up through them. I remember I'd looked in her room just before running downstairs to catch a cab, thinking, “Please God. Please let her be okay with everything. Help her to allow Steve to take care of her.”

  I knew Steve would do his best to care for Jaimie. And he kept telling me they'd survive. That didn't make me feel any better. I didn't want them just to survive. I wanted us to be like every other family who only had to worry about a bit of sibling jealousy. I wanted to feel good about leaving Steve with his daughter. And I wanted Jaimie to feel good about being alone with her daddy. None of those things were a reality for us, though. And I didn't know what to do about it or even how to try to fix things.

  Even though the labor and birth was a much easier and shorter process the second time around, Jordhan went into distress because her umbilical cord was wrapped around her neck. The doctor had trouble getting her unwound. For a good five minutes, I laid there panting with the oxygen mask on my face as the doctor tried as quickly and gently as she could to free Jordhan. At one point, my nurse prayed for Jordhan because they'd lost her heartbeat—just like what had happened with Jaimie! Finally, I was allowed to push again and felt a wave of relief as Jordhan slid out of me.

  When my doctor placed Jordhan in my arms, I was finally able to enjoy her. My love bubbled up and overflowed as I cried for several minutes. I even got to cut Jordhan's umbilical cord because the birth happened so fast, Steve missed the event. All of these things I took as signs of good things to come. Right then, I knew there was a reason for Jordhan being in our lives. It was a miracle we'd had Jaimie and Jordhan's presence was no less of one.

  “I don't know how, my little Jordy,” I said to Jordhan as she gripped my thumb. “But, I just know you were meant to be here. And I have a feeling it's for Jaimie. I just hope she sees you that way.”

  A few hours later, Jordhan and I were taken to a hospital room where we waited for Steve and Jaimie. I was so nervous. I'd called Steve after I'd had Jordhan and heard Jaimie screaming for me in the background. He'd told me she wouldn't even let him get her morning cup of milk or let him get her dressed. But I guess, with some prompting of being able to see Mama and the new baby, she eventually let him because they'd gotten to the hospital safe and sound.

  I had my lunch tray sitting on a table and Jordhan slept soundly in her bassinette. As soon as Steve opened the door to my room, Jaimie sprinted toward me and leapt up onto the bed. The first thing she did was crawl toward the bassinette, pulled herself up and leaned into it. As Jaimie moved closer down to Jordhan's face, I moved to grab her but then I heard her little voice, “Hi baby. I Jaimie.”

  I was stunned. The only other words Jaimie had said before that were “Mama,” “Soodee,” (her name for her pacifier), and “Ducky Guy.” (One of the Wiggles’ dancers.)

  “When did she start saying that?” I asked Steve.

  He smiled. “Just now.”

  Right then, I knew Jordhan was there for Jaimie. I'd always felt Jaimie needed another person to help her feel safe in her world; to make her see that things don't have to be so scary all the time; a friend—besides me—who'd make her feel brave. In the years to come, my early prediction solidified but it took quite a while for Jaimie to see Jordhan as an ally and a blessing.

  Jaimie wasn't able to handle Jordhan's crying. Whenever Jordhan did cry—and thank goodness it wasn't often—Jaimie sat in the middle of the floor, rocking with her hands over her ears screaming until Jordhan stopped. If we changed a diaper, Jaimie coughed and gagged for almost an hour after the event. And when I fed Jordhan, Jaimie got very angry. In fact, it got to the point where we'd have to cover Jordy's head whenever Jaimie came around because Jaimie tried to punch her in the head. And if I paid more attention to Jordhan than Jaimie felt necessary, she tried pulling the baby right out of my arms. But it wasn't always so bad.

  Jaimie loved running to get diapers or outfits for Jordhan. She liked lying on the floor beside her for floor fun time. She even enjoyed climbing into Jordhan's crib with Jordhan when I got her after a nap. But what amazed us was even though Jaimie wasn't able to handle most things about babies, Jaimie only smiled or laughed with Jordhan. And she was the only person Jaimie gave hugs to.

  I also finally had more proof for Jaimie's doctor. Jordhan was a very different baby than Jaimie was. Jordhan loved to be kissed, hugged, and cuddled. She laughed and cooed. She interacted with us and made eye contact with us right from the start. She seemed interested in the activities going on around her and, most importantly, she loved being with her Daddy. Jordhan was exactly how babies were supposed to be. Sure she cried once in a while and was cranky but it was tolerable. Normal. We finally knew for sure something was wrong with Jaimie.

  Unfortunately, things had to get worse before they could get better.

  5

 
The Last Straw

  In July of 2005, we'd outgrown our tiny two-bedroom apartment and decided that we'd make the move into a three bedroom townhouse. Moving can be a stressful situation for anyone. For someone who's moved many times during her life, I can honestly say the best thing about moving was unpacking. The worst parts are over: finding a truck, packing up, loading, finding friends who'd actually be willing to help you on a long weekend—which it was when we moved. But once you can unpack your stuff, you're home. Of course, that's the best-case scenario for people who move without toddlers. And without a toddler who'd developed an intense need for things to stay the same.

  Packing with Jaimie around was a nightmare. Every time I wrapped something up and put it in a box, she came right behind me and unpacked it.

  “No!” she said. “No go.”

  Then she put whatever I dared to pack away back where it belonged. We had to do most of our packing when Jaimie was asleep; then we sent the packed boxes over to a friend of Steve's who stored them in his garage until move day. I felt so sorry for Jaimie. First, we brought this new baby into the house she had to share everything with; then we were packing up all of our things into a brand new home.

  In the end, Jaimie handled everything okay. We distracted her by allowing her to drive our things with Steve in the moving truck. She liked that. But when we got to our new home, Jaimie demanded her stuff come out first. And we had to put everything in her new room exactly as it had been set up in her old room. That wasn't the end of it either.

  Even though the rest of us had settled into our new home, Jaimie still struggled with the changes. Her need for routine and what was familiar to her became even more intense. In fact, if we were going through her bedtime routine, we needed to do the entire process from the start if we missed even just one step. It was exhausting. Even if I did everything exactly the way she wanted, she still got up with night frights, or wanted to be with me.

  Shortly after our move, I began researching for more information on Jaimie's behavior. I've always been a person who can handle anything as long as I have all the resources and information to draw from. When I had cervical cancer, I talked to other women and I researched it so it wouldn't be as scary. When I found out about my bicornuate uterus, I read journals and asked endless questions to my doctor so I'd know what was going on inside of me. But without knowing for sure what was going on with Jaimie, all I could do was research her behaviors or symptoms and match them to…something. I certainly didn't want to label my child but, darn it, I needed to help her. How was I supposed to do that when I didn't know what I was fighting?

  I sought out other mothers of autistic children because, until then, all I knew about autism was how it was represented on television or in books: a socially recluse child, rocking to calm him or herself and freaking out to any sort of effort someone makes to interact with him or her. Of course, this was as wrong as anyone who'd made snap judgments about Jaimie's behavior. So, I read more about it and asked many questions.

  I was immediately embraced into this cyberspace community of mothers having children with special needs. They gave Steve and me things we'd never had before then: acceptance, guidance, advice, and direction. It was a true relief for me, most of all, to know that there were people who got my concerns and never once made me feel crazy for feeling the way I did. And, even through the Internet—without never having met me or seen Jaimie—felt my concerns were justified enough to need extra help.

  They sent me wonderful resources and books, which I eagerly read. The only two things I found even close to describing the way Jaimie acted was, again, autism and another neurological disorder called Asperger's. There are literally hundreds of books and other resources on these two subjects. In the newer resources I'd found since I'd last researched the subject I read that children with autism usually display varying degrees of the following signs and symptoms:

  Expressive and receptive communication and social deficits.

  Insistence on routine and resistance to change.

  Appearing to be “off in their own little world.”

  Resistance to physical closeness, such as hugging.

  Attachment to “odd” toys, such as kitchen utensils.

  Parallel play (playing beside other children rather than interactively with them) and lack of imaginative play.

  Sudden and apparently unexplainable angers and tantrums.

  Repetitive behaviors and obsessive-compulsive disorder.

  Splinter skills (excelling in a particular skill that is above the apparent IQ level.

  Appearing to have sensory overload in normal situations.

  (Taken from The Everything Parent's Guide to Children with Autism by Adelle Jameson Tilton)

  This list was much more informative and geared to the layman so it was easier for me to relate them to our situation. All I could think of after reading that list was, “Wow! This is totally Jaimie!” But the more I researched autism, the less sure I still was that it was Jaimie's problem. What I didn't know from my earlier research was that in order for children to be categorized as autistic, they also had to display deficits in other areas, such as developmentally and cognitively, which Jaimie didn't show. In fact, she was developmentally ahead in many areas. Then, I read all the information about Asperger's Syndrome.

  In that disorder, a child has to be impaired socially in more than one of the following areas:

  Impairment in the use of nonverbal behaviors (such as eye contact, facial expressions, and gestures) during social interaction.

  Lack of development of relationships with peers.

  Failure to seek to share enjoyment, interests, or achievements with other people (for example, by not showing objects of interest to others.)

  Failure to reciprocate emotions or social gestures.

  On top of that, a child also has to demonstrate “restrictive repetitive and stereotyped patterns of behaviors, interests and activities,” in at least one of the following areas:

  Unusually intense preoccupation with one or more stereo-typed interests.

  Obsessively following specific, nonfunctional routines or rituals.

  Repeated motions, such as hand or finger flapping or twisting.

  Unusual preoccupation with parts of objects.

  In both cases, their behaviors have to be significant enough to interfere with normal living. One thing I found confusing about these disorders was that there are so many different versions underneath the headings of autism or Asperger's making one feel like a new branch was created whenever a child showed signs or symptoms that didn't fit neatly in a specific category. I decided at that point that shoving what I'd learned to the back of my mind again and putting my focus on what I could do for Jaimie was more important than trying to give her a label.

  My greatest fear was because my mother had bipolar disorder and her birth father died of Alzheimer's Disease. Did Jaimie have something wrong with her brain? What if I'd unknowingly passed something on to my child?

  I wanted to pay closer attention to what she was doing, how she was or wasn't functioning to see what direction we could go in. One frosty morning, about three months after we'd moved into our new home, it became crystal clear we were losing the battle of trying to care for Jaimie on our own. Whatever tried grabbing control of our little girl came out in full force. And it scared the hell out of me.

  I just knew that day was going to be a huge challenge from the moment we'd woken up. As usual, Jaimie had woken up before six a.m. Her eyes bore dark purple circles under them as her sleep had been interrupted by hourly night frights.

  It had taken forever but she'd finally chosen clothes that felt right—no tags, zippers, buttons, or funny feelings. When she'd gotten downstairs to the living room, she'd seen her milk in her sippie cup, as always, and the television on the weather channel. She never actually watched the television but some days she needed extra noise in the room to block out the noises she couldn't handle, such as Jordhan's budgie-like squeaks and giggl
es.

  Jaimie's tired blue eyes darted back and forth from Jordhan to the television. I knew I needed to get her away from that environment for a while. I'd decided that a walk before lunch was the best way to cool us all off and clear our heads. It had taken us over half an hour to get ready for the fall weather: jackets, shoes, mitts, and several diaper changes. We'd finally left the house. But no sooner had we turned the corner of our block than Jaimie froze in her tracks saying, “Mama, my bum tickles.”

  At almost three years old, Jaimie still wore diapers because she wasn't ready for the toilet training process. Actually, she was ready and we tried many times. She knew when she had to go so it wasn't that she didn't understand the process of going to the bathroom, or that she wasn't able to control her pee or poop. The problem was that she controlled it too much. She wouldn't allow herself to go—even with her diaper on. She was stuck between not liking the feeling of going but hating a wet or dirty diaper. So she held it. And that, of course, created even more discomfort.

  Her wearing diapers never bothered us. A lot of kids were difficult to toilet train. But it was a huge battle to change her too. From the moment you ripped the diaper tabs to open the diaper she covered her ears and screamed. Then she kicked at you when you wiped her. A person only needed to get booted a few times in the face before giving up! And because you couldn't clean her well enough she complained that she was itchy. That must have been what happened that day.

  I'd taken a deep breath and said, “Jaimie, honey, I wiped you several times before we left the house. Let's keep going. I'm sure the feeling will go away.” Jordhan whined, not understanding why we'd stopped.