Stephen King would have made a lot of money with book ideas in our house during that time. The pattern we found was that the more stressed her day was, the longer she stayed awake, and the worse the awakenings.
Playing: For me this was devastating to watch. Children are supposed to enjoy playing, exploring, and interacting with toys. It's the best part of being a kid! As mentioned earlier, there were certain sorts of toys Jaimie avoided. She stopped playing with toys that made loud, shrill noises; popped up; anything with Velcro; anything that had a scent, or stuffed animals that weren't made from the soft plush material.
She also didn't like sand, dirt, dust, and fluff from carpets or recycled rubber pieces that are sometimes laid down at playgrounds. Oddly, she did like playing in the snow. Even when her hands got red and ice cold, she loved playing with it—and eating it! She wasn't very explorative or adventurous. She stuck with toys that were familiar to her and that she knew what to expect from them.
Dressing: When Jaimie was tiny, the only times she didn't scream when we'd dressed her was when we put her in a onesie (those are the short-sleeved shirts that snap up between the legs) and socks. That's it. If you took her socks off, she wouldn't walk on the carpet. If you put pants on her, she screamed until they were taken off. And certain fabrics—like wool, corduroy, or overalls—drove her crazy.
As she got older, it got more challenging to find things she was willing to wear. She refused to wear anything with holes, buttons, zippers, snaps, Velcro, bows, heavy patterns, or bright colors. She wouldn't wear shorts, overalls, skirts, or dresses. Her socks had to be brushed cotton and she would only wear sweats with fleecy insides. And we had to cut the tags out of every single item of clothing—including underwear—or she ripped at the clothing until it was removed.
There were times when Jaimie and I sat on the floor, surrounded by piles of her clothes, as she screamed in frustration with me crying right beside her. By the time she turned two, the only things she allowed us to put on her were tights, long-sleeved shirts, and socks—even in the hottest weather.
Socializing: Quite simply put, she didn't socialize. In fact, if she wasn't who initiated any sort of contact with someone else, she ran away. It didn't matter if it was a woman, man, boy, or girl. I can't tell you how many times I had to run after Jaimie when she sprinted away from the playground just because another child said, “Hello!” to her.
Nevertheless, she seemed interested in people. She pointed at other children playing, or at people doing interesting things. But if they got too close or tried interacting with her, she seemed to panic. Worst was when people actually touched her—that would be when she ran. We thought, maybe, she was just painfully shy but she reacted the same way even to Steve. Sadly, she rarely laughed, smiled, or made eye contact, even with me.
Hurting herself: This was the most upsetting and terrifying part of everything we dealt with in relation to Jaimie's behavior. The main reason I knew something was wrong with her at three months was because it was when her temper surfaced. Even at that young age, Jaimie seemed determined to do things and got extremely angry when she wasn't able to.
I remember watching her, at about three or four months old, trying to crawl—which, according to the baby books, was a bit early. She got up on her hands and knees, rocked back and forth, and then hurled herself forward, landing on her face. After a few attempts, she simply lay on her side and screamed with her little body stiff as a board, her fists clenched and her skin a bright crimson. Then she rolled back over and kept trying. She did it but her fierce determinism was disturbing… almost obsessive! And it got worse as she got older.
By the time she was a year old, Jaimie resorted to clawing her skin, scratching her eyes, pulling her hair out in clumps, even smashing her head into the floor, wall, or her headboard. Usually it stemmed from frustration but we noticed her doing such things after we'd touched her or if her clothes bothered her or even when we cooked certain things. And if we got a new toy that was too noisy, moved too much, or she otherwise didn't like, she simply threw it into her closet.
Her anger and aggression almost never resulted from her not getting her way but more from what surrounded her.
Communicating: By the time she was two, Jaimie had hardly spoken a word. I'd taught her some simple sign language gestures to indicate things like, “drink,” “tired,” “hungry,” “soother,” and similar words. But she didn't even use the gestures much. A lot of times, she simply went and got what she wanted/needed, except, of course for things she wanted to eat or drink. When we tried getting down to her level to ask, “What do you want, Jaimie? Do you want ____ or ____ or____…” she got even more upset.
Yes, there was the frustration of not being understood on her part but it was as if our response to her, our interacting with her, upset her even more. In fact, when she got too upset, she simply shut down. She completely zoned out—as we called it—not even acknowledging us. In that state of mind, she was unreachable and unresponsive. It was frightening.
Aside from the above instances—and even though she wasn't talking—there were times where life with her seemed almost normal. As mentioned earlier, she loved books. She also loved drawing and doing puzzles, both of which she was able to do from a very young age. She found great comfort in music (especially classical, jazz, the Beatles, and the Wiggles) and danced along. And when you spoke to her, you could tell she heard you and absorbed your words. She just never responded.
Clearly our Jaimie was intelligent and found enjoyment in certain activities—which is why I'd always questioned her being autistic. So the question I asked myself was: What was causing her to shut us out?
I had to find out, even if I didn't like the answer.
3
Steve's Story:
“Daddy Loves You”
Daddies are role models to their sons. They help to guide boys to be respectable, hard-working men. To their little girls, Daddies are the ‘first man’ in their lives. Girls learn how men are supposed to treat them and what will and won't be tolerated. There are so many men out there who miss out on being a father to their children—either by choice or because they're prevented from playing that role. So, it was important to me to be with a man who would take his role as a father very seriously. Steve was that man.
Daddies are a very important part of their children's lives. As a girl who grew up without her father, I felt very much what I must have missed as I watch Steve with our four children. Steve is an amazing father. It may have a lot to do with the fact he didn't enjoy a close relationship with his own father but he's always tried to be a hands-on Dad. And, believe me, it's been a difficult journey for him at times.
There's something about Steve that Jaimie wasn't able to handle. In fact, we still haven't figured out what it might be. Whether it's his scent, the tone of his voice, or the feel of his skin, but after spending any small amount of time with him, she ends up screaming, “Daddy, go away!” The worst part has been watching him withdraw from his own child because he didn't want to make things worse.
When we first brought Jaimie home from the hospital, Steve did everything: diaper changes, walked and rocked her to sleep, even dealt with projectile vomit situations. But at around three months, when Jaimie started teething, things changed. She simply wanted nothing to do with him. She screamed at his touch; turned her head whenever he spoke to her; and wouldn't even take her bottle if he tried feeding her.
How awful it must have been for him to only hold her for about five or ten minutes to give me a break—and, even then, he had to hold her with a pillow between them or she tried wriggling out of his arms—before having to give her back to me. Of course, as soon as she was back with me, or he put right down, she settled. When she got older—between one and two years of age—she was more aggressive about her feelings towards him. She pushed him; yelled at him to leave her alone or to let her go; covered her ears when he spoke; gagged when he got too close; and threw her cup at him when he tried to just giv
e her juice or milk.
We didn't understand why. It was one thing to prefer one parent over the other, as our physician stated happened often. But it was just not normal for a child to reject a loving parent outright. And Steve gave up. He basically backed off and let me deal with her most of the time. In his mind, it was better to have stayed in the background than to have made things even worse.
After a while, I wondered why we'd even had a child when we couldn't share in raising her or even loving her. But I admired Steve's strength. Most guys would have said, “Why the hell even stay, then.” and left. He didn't. He did his best with what he could do, even when it hurt. God love him.
After Jaimie's SPD diagnosis, when she was about two-and a half, we began therapy as a family. It taught us how to communicate and relate to Jaimie as well as helped her learn more effective coping tools to deal with us. Unfortunately, Steve often felt like an outsider both because Jaimie still rejected his ‘Daddy-ness’ and also because he wasn't always able to participate in her one-on-one therapy sessions.
One evening, not too long after Jaimie began her in-home therapy with her occupational therapist (OT), Steve and I had made a date to catch up. We hadn't seriously talked for quite a while and things between us seemed…strained. He'd always been so quiet and had never been very open about his feelings. But I knew he'd been hurting even if he'd never shown it outwardly. He simply hid behind jokes.
After having done Jaimie's bedtime ritual three times, until she felt safe and satisfied, I came downstairs for our chat. Steve sat on the couch, hiding his face behind the newspaper.
“You want to talk now?” I asked.
He put his newspaper down. “Yeah, sure. Tell me what's going on.”
“There's not much to tell, really,” I said. “Donna, Jaimie's OT gave me this questionnaire to fill out. I'm supposed to rate Jaimie's reactions to situations, people, and other stuff. God, I don't know about this. I hope we're doing the right thing.”
“We have to try, hun,” Steve said, picking his paper back up. “What's the questionnaire for?”
“It's something we're supposed to do together,” I said. “It's going to tell us what Jaimie's tolerance level is for her environment so we know what sort of treatment to get her.”
“Great,” he said from behind the front page.
I shook my head at him. “No wonder Jaimie is so indifferent with you. You show absolutely no interest in her well-being. You know what? Forget it. Read your paper and I'll just take care of it by myself. Like always.”
He threw the newspaper to the side, startling me. “What am I supposed to do,” he bellowed. “I can't touch her or she screams. I tell her I love her and she says ‘no, only Mama.’ I can't even comfort her and my being around just seems to make things worse. Tell me, Chynna, what do I do?”
I had seen him cry just three times in the ten years that we had been together: when his grandmother died; when Jaimie was born; and right then. For the first time during all the madness, he'd finally let his emotions flow. I was proud of him.
I sat beside him, guiding his head onto my lap; then stroked his hair as I said, “You tell her you love her even if she doesn't want to hear it. You give her your support even if it's from a distance because she can't handle your touch. And you tell her you're here for her even if she doesn't want you to be. You're her daddy and she needs to know she can feel safe with you. You can't be afraid to show your feelings—that won't help her. Show her it's okay to be scared or angry or sad and that you feel those things too.”
I wasn't sure if what I'd said made him feel better about the situation. How does one make someone feel better about their child rejecting them? You can't. I had been the only person in Jaimie's world whom she'd trusted near her to do the things she'd needed done. Even though I'd never received physical love from Jaimie either—because hugs, cuddles, and kisses were out of the question for a girl who couldn't handle touch—she'd never pushed me away. I could only imagine how difficult and painful it had been for Steve. I'd felt helpless for years—stuck between the two people I'd loved most in the world and not being able to help either of them.
Then at bedtime the next night, I guided Jaimie up the stairs to her bedroom. Steve reached out to her as she'd rushed past him on her way to the stairs and he said, “Goodnight, Jaimie. Daddy loves you.”
Jaimie stopped dead in her tracks, her eyes widening. “No, you don't say that. You don't love me. Only Mama.”
Steve held his ground—he didn't back down nor shied away. “Yes, Mama loves you, Jaimie. But Daddy loves you too. It's okay if you don't want to hear it but Daddy wants to say it.”
To this day, Jaimie still hasn't told Steve she loves him. But she knows her Daddy loves her. And she shows him in her own ways: she draws pictures for him, she tells him about her day, and asks him about his and will even sit in his lap—facing away from him, but still a huge step.
One day, she'll be brave enough to say, “I love you too, Daddy.” Until that day, Steve knows in his heart how she feels. And he never lets a day go by that he doesn't remind her of his love for her.
4
…And Baby Makes Four:
The Confirmation
Shortly before Jaimie turned one, Steve and I talked about having more children. It was a concept that terrified both of us. Aside from the usual concerns of whether we could afford it or if we had enough room, we asked ourselves a lot of other questions: What if we had another child with the same temperament as Jaimie? Would we be able to give the same attention to both children? Could I handle caring for an infant when Jaimie needed me so much? And, what concerned us most was whether Jaimie would be able to handle another baby in our house.
We were told that because of the level of difficulty we'd had conceiving Jaimie, we'd have to start early for another child as we might have the same problems. Imagine our surprise when the stick turned blue after just two months of trying! I was so shocked I had to do the test again—twice! Elation swept over me, then despair. What was I going to do?
I left one of the positive pregnancy tests on top of Steve's dresser for him to find when he came home from work that day. I just couldn't bring myself to say the words, “I'm pregnant.” Of course, he never saw it. We carried on an entire conversation about his day until Jaimie reached up on her tip toes and tried grabbing it.
He took the test from Jaimie's hand, and then took a closer look at her find. “Really?” he said, looking at me.
I nodded then burst into tears. I don't know why. I tried never to cry in front of Jaimie because it scared her. It wasn't hormones. I started thinking about how life would be when the baby came when I was already drained, tired, and stressed. Not a good way to start.
He came over and gave me one of his famous bear hugs. “Oh, honey,” he said. “Everything will be okay. I'm sure. You should be happy. I'm the one that should be ticked off. I only got two tries in before it worked. That's so unfair!”
Leave it to Steve to turn my frown upside down. I knew we'd be okay—eventually. And I also knew it wasn't good to worry so early on.
I was very sick for the first five months of the pregnancy. This was unacceptable to Jaimie, who was used to me jumping to her every need when it was demanded. As my baby bump grew, so did Jaimie's tantrums and our concerns for her.
One night, about five months into the pregnancy, I was awakened by a steady thumping noise on our bedroom wall. It was similar to the sound of a bouncing ball. I crept into Jaimie's room, as that's where the sound came from, and found Jaimie in her crib ramming her head into her headboard. I had no idea how long she'd been at it but her head-banging was so strong she had moved her crib practically across the room.
Night frights were nothing new. Nor was her banging her head on the wall. But doing it in her sleep was new and it scared me. I rushed over to shove something between her head and the headboard only to find everything in her bed on the floor. The weird thing was her bed toys weren't just tossed around; they we
re neatly lined up beside where her bed had been. The head banging got harder so I instinctively tried shoving my hand between her head and the headboard only to curse out loud at the impact.
I must have startled her because she stopped suddenly and turned to me. I'll never forget the look on her little face: eyes wide open, a goose egg – the size of a large marble – on her forehead and her face shiny from tears and drool. She screamed, stood up, then head-butted me in the belly. She knocked the wind out of me but, at the time, I was more concerned that Jaimie would knock herself unconscious than whether she'd hurt the baby.
After about an hour, it was over. She lay back down and I watched her until I saw her back slowly raise and fall. It was then that I realized I hadn't felt the baby move since before I went into Jaimie's room.
I lay on the couch for several minutes until I finally felt a hearty kick in my side. Then I cried until the sun came up. In the morning, I told Steve everything that had happened and I'm not sure whether he completely believed me. But he was scared too, especially for me and the baby.
“That's it,” he said. “There's no way she can be allowed to do that. What if next time she hurts the baby? Or you?”
“It's fine,” I said. “Don't worry about it. She didn't do it on purpose. She was asleep.”
He shook his head at me. “What if next time she does it when she's awake?” he asked. “You can't do everything all by yourself. Not right now.”
I knew he was right but what was I supposed to do? The only time I'd left her with Steve since she'd been born was when I had to write an exam for university. And although they survived, it didn't go as well as I'd hoped it would.
When I'd gotten home from that exam, there was a note that Steve had taken Jaimie to run around in the field behind our apartment building. We'd done that a lot whenever Jaimie had trouble napping or seemed to need to work off some excess energy. I'd gone out to meet them. From a distance, I'd seen Steve walking a safe distance behind Jaimie as she ran around in circles with her arms flapping. Steve had tried picking her up and she'd reacted by throwing herself backwards, screaming.
Not Just Spirited Page 4