Steve acknowledged that Jaimie was ornery and that she seemed indifferent to him but he felt I was being overprotective. I knew in my heart he was just as afraid as I was but he'd chosen to deal with it by not dealing with it. And his reaction made me feel even more alone.
“It's becoming exhausting taking care of her, Steve.” I said after one of Jaimie's two- hour fits following her bath. “I don't do anything right: she screams all the time; she won't go to sleep unless I rock her and rock her, and I fight with her just to change her diaper. I just don't think this is normal. We should tell the pediatrician about all of this in detail. We need to let him know just how bad things really are.”
“And say what?” Steve said. “‘Oh my daughter hates her Daddy and everyone else around her’? He'll just tell us that she's making strange or whatever that's called. Isn't that normal for her age? You're the one taking Psychology.”
“Look,” I said. “These are just textbooks filled with descriptions of abnormal psychological disorders. They don't tell us about Jaimie. There's something wrong, Steve and it's getting worse. I can't even leave the room because she's scared to be apart from me for more than a couple of seconds. I'm really worried.”
Steve eased. He cupped my face in his hands and said, “Let's just give it a bit more time, okay? She's getting all these teeth and is just…frustrated. If things don't get better after her teeth come in, we'll tell the doctor.”
And we tried. We sat in the pediatrician's office every two months—with Jaimie koala bear-hugging me, screaming at the top of her lungs—trying to convince the doctor something was wrong with her. The scene was the same every time:
He said something like, “You have a very healthy little girl there. Do you have any other concerns?”
I responded with, “Yes, actually. How she's acting right now is a concern. This is how she is most of the time.”
He'd answer with, “A lot of children react this way to coming to see the doctor, Chynna. I'm sure you can hear the other little spirited ones down the hall before I come in here.”
By that point I would be yelling so the doctor heard me over Jaimie's screaming. Although Steve and I were used to doing it by then, I'm sure the doctor didn't appreciate it. “It isn't just when she comes here. It's at home, at the park, at the grocery store, in the bathtub…”
The conversation always ended with him saying something like, “Chynna, you and Steve are good parents and Jaimie is a very healthy little girl. She's just a little spirited. That's all. She'll grow out of it soon enough.”
Just spirited! What really ticked me off during that time was that people weren't listening to us. By listening I don't mean we were dealing with people hard of hearing that we had to repeat ourselves to until they heard us. I mean people simply weren't listening to us. Even the professionals, like Jaimie's doctor or my circle of psychologist friends, weren't listening to us.
Jaimie's behavior was either explained away by the developmental stage she was in at the time or Steve and I were accused of seeing things that weren't there because Jaimie was physically healthy. I just couldn't fathom how people thought we were making it up or even that we were reading more into it. Then Steve hit the nail on the head:
“None of those people live here with her to see what she's really like.”
Bingo. Nobody else saw Jaimie getting up—and staying up—every night with night terrors or saw that it took two of us just to change her diaper, or her clothes or witnessed her two to three hour long fits, or saw our pain at not being able to comfort her. Nobody else saw how it ripped Steve's heart out every time Jaimie screamed whenever he got near her. And none of those people had to walk on eggshells not knowing what next event sent Jaimie throwing herself backwards onto the kitchen floor, banging her head into it when she was fine less than one minute earlier.
But how could we convince people that something was wrong when they didn't live with us and only had our word to go by? We needed to prove to them something wasn't right. I had six photo albums full of pictures of Jaimie from when she was born to a year old and in only one of them was she smiling. The others showed hiding her face, screaming at us to put the camera away or, crying. But pictures weren't enough.
We needed more solid proof.
~~~
As Jaimie approached her first year, my heart broke watching her struggle with things other children seemed to enjoy. Most one-year olds explored and were curious about people and what surrounded them. Jaimie did have specific toys that she liked. She enjoyed books, she loved music, bubbles, balls, her soother, and a little beanie Tigger I'd given to her one night in a feeble attempt to calm her. That was pretty much it.
She didn't like most of the stuffed animals she'd gotten. Any toys that were too loud, moved on their own, too bright or had weird textures, she ended up shoving them under her bed or in her closet. And she refused to look at books that were “Scratch-and-Sniff” or textured. When she was very small, she seemed more drawn to odd things like my Tupperware containers or a choo-choo I'd made out of empty Diaper Genie containers. And holidays? Forget about it. Anything like birthdays, Halloween, Easter, and especially, Christmas, where there were decorations involved and changes to things around her, she simply cried inconsolably. She just never seemed to allow herself to enjoy the fun things that other kids did.
I felt so guilty constantly comparing her to other children we saw but what else could I do? Our doctor wasn't seeing what we were and without any other children, who had struggles like Jaimie did, all I could do was take mental notes of what other healthy children were doing. I was desperate to find a solution because Steve and I both noticed Jaimie slipping further into her own world but neither of us knew what to do to draw her back into ours.
I took advantage of my psychology connections by doing research on her behavior. Being a psychology major gave me access to many resources but it was both a blessing and a curse. As a blessing, I could talk to professionals and be given direction for research most other people didn't have access to. As a curse, however, I saw Jaimie's symptoms in every psychological, neurological and emotional disorder out there. One disorder I read the most about was autism.
There were many definitions of autism out there, depending on where one did their research. I learned that autism affected the normal development of the brain, specifically those involved in the areas of social interaction and communication skills. These children showed difficulty in verbal and nonverbal communication, social interactions, and leisure or play activities. Autism also interfered with the ability to communicate and relate to the world around them and the people in it.
Additionally, I learned that children with autism could exhibit repeated body movements (hand flapping, rocking), unusual responses to people or attachments to objects, and resistance to changes in routines. Most worrisome to me was when I read how, in some cases, these children practiced aggressive and/or self-injurious behavior. And that they may experience sensitivities in the five senses (sight, hearing, touch, smell, and taste.)
I was almost positive that Jaimie wasn't autistic. Yes, there were many signs and symptoms she displayed that were similar to children with autism but it's what Jaimie didn't have that convinced me it was something else. There were times I looked deep into her ocean blue eyes and saw she was in there. She seemed interested in her world; she just didn't seem to understand how to relate to it. She wasn't speaking but she understood us and did acknowledge us when we spoke to her. And even though she rejected my affection, I felt in my heart that she longed for it.
But the signs and symptoms of autism nagged at me for years later. And, of course, I worried. Each day that passed, Jaimie inverted deeper into herself. And her reactions to situations, experiences, and people grew even scarier.
By the time Jaimie turned one, Steve and I were paranoid to take her anywhere or to allow people to come around her because we didn't know what or who would trigger her fits. It got to the point where dealing with her fits were
so exhausting and emotionally draining, we'd have rather avoided situations entirely than to deal with the aftermath—which could linger for days, sometimes up to a week, after an incident.
By then, we had the sense that it was mostly noises, smells, and things touching her that set her off. The problem was we never knew exactly what those noises, smells, and touches would be as they seemed to change from day to day. Or her tolerance was different, one way or the other.
We actually had to debrief people before they came to visit: “Okay, here's a list of Do's and Don'ts when dealing with Jaimie. Pay particular attention to numbers one through ten as they involve touching and that's a big no-no. You can't even touch something you want to give to her—you have to just leave it on the table in front of her or give it to Chynna to give to her for you. And for God's sake, don't hug, kiss, cuddle, tickle, talk to, look at, or otherwise interact with her…”
That's a slight exaggeration but I'm sure that's how it must have felt to visitors. Imagine how devastating it was for her Grams who lived two provinces away from us, and only able to see her granddaughter twice a year, to be told to come visit but she couldn't talk to Jaimie, sit beside her, touch her in any way, or even give her something because she'd freak out! And if/when people weren't willing to listen to us or respect Jaimie's space, they simply weren't allowed to come. We just didn't have the patience, energy, or time to explain over and over ‘why’ when we didn't even know ourselves.
I'm sure people thought we were controlling but we were only trying to keep things calm both for Jaimie as well as for ourselves. Other people just didn't understand that Jaimie couldn't deal with their presence. They didn't understand that it took up to a week, depending on the duration of the visit or the visitor, for her to get over it. And they didn't understand that it was me who had to cope with her reactions on my own since she no longer wanted anything to do with Steve.
I decided after Jaimie's first birthday that I was going to do everything in my power to find someone to listen to us, someone who could give us direction. We simply couldn't do it on our own anymore.
Someone was going to listen to us, damn it!
2
“Just Spirited”
Are You Kidding Me?
The period of time between Jaimie's first and second birthday marked when her reactions to things, people or situations peaked. In fact, her reactions to things became so severe they interfered with everything in her life: eating, sleeping, playing, socializing; even the simple act of changing her clothes or diaper was a battle that took both Steve and I together to achieve.
It was a time of both relief as well as complete frustration. Our frustration stemmed from her becoming completely dependent on me—the one and only person she trusted. I couldn't even go to the bathroom without her crying inconsolably until I came back out. But on the other hand, other people finally witnessed Jaimie's behavior and agreed that something might have been wrong. But her doctor still wasn't convinced.
He still told us not to worry and that she'd grow out of her spirited stage by the time she was two. Was he kidding us? At every doctor's visit, Jaimie's behavior seemed to worsen. It took every restraint inside of me not to grab him and scream, “What is wrong with you? Surely this behavior isn't typical of all of your patients!”
We knew that without the doctor's acknowledgement and recommendation we'd never have access to the community resources we needed to find out for sure if something was wrong with Jaimie. Most community assistance places in Canada—at least here in Edmonton—needed a doctor's referral and without the doctor's referral, we were stuck. Even more frustrating was that the things we were most concerned with were always explained away by something ‘behavioral’ or ‘developmental’:
Her slow weight gain: “She's always been long and lean. That's just how she is.” (Jaimie was always in the 95th percentile for her height but only between the 15th–25th for her weight.)
The fact that she refused to eat foods she used to like: “All children become pickier as toddlers. She's just exerting her independence.”
The fact that she didn't sleep at night: “My children didn't sleep through the night until they were almost five.” (Yes, I thought, but did your children wake up with night terrors every night? Or wake up in the middle of the night and stay awake until the sun came up?)
Her severe reactions to smells, sounds, or touch: “Again, she's just trying to be independent. She'll grow out of it.”
Her fear of pooping or peeing: “We'll just give her some medicine to help soften her stools; then she won't be able to hold it. As for peeing, just give her a lot to drink and she'll have to go eventually.”
Her need for routine and familiarity: “All children need routine and prefer what's familiar to them.”
The odd way she handled objects: “Some children simply are fussier with what they choose to play with.”
Her aggressive resistance to us trying to get her to do basic hygienic activities, like brushing her hair or teeth, giving her a bath or getting her dressed: “Once again, we can chalk that up to her spiritedness. Most children don't like getting their teeth brushed. These are things she needs to do and will get used to it eventually.” It took both Steve and I to do any of these activities, especially getting her dressed. Sometimes, her resistance was so strong, both of us ended up with bruises, bite marks, or scratches all over us.
How she'd hurt herself when she was confused, angry or upset: “Her reactions stem back to her spirited nature. Just be strong and start to administer disciplinary actions.”
You get the idea. We were made to feel that everything we were going through was all in our minds. That in order to get Jaimie the help she needed, something very serious had to happen to her or that we at least needed documented proof to convince him. It was angering and my heart broke for poor Jaimie who tried telling us in her own way that she was suffering but no one understood her. That's when I decided to record absolutely everything that went on with Jaimie in a journal. They wanted proof? I made sure they got it.
Essentially we kept track of all of Jaimie's fits—that's what we called her tantrums since “tantrums” didn't quite describe how serious they could be—when they happened; their duration and intensity; what we tried doing to calm her; what worked and what didn't; and, if we were able to figure it out, what triggered them.
That was one of the most difficult chores. Not only did we have to re-live the experiences, we'd read over a situation and think, “Oh my God. This reads like a horror fiction story. Is this really our child?”
It hurt. But at least we felt we were doing something proactive and not just watching from the sidelines. Even though we still didn't have any solid answers, we were able to pinpoint several areas of difficulty and where patterns were established:
Eating: Although Jaimie was never an adventurous eater, she at least tried different things. But as she approached her first birthday, she refused to eat. In fact, it wasn't long before the only things she ate were plain pasta (and it had to be fusilli), a specific kind of chicken pie with all the veggies removed, apples, and vanilla yogurt. For a girl who had trouble keeping weight on, this was a huge concern for us. We'd noticed that she refused foods based on their smell, color, or the way they looked. Whenever we gave her something—even something she'd tried before—she smelled it, poked it, and manipulated it in her hands. If it didn't smell or feel right, she wouldn't eat it. And if we did get her to try something she spat the food out, gagged on it, or threw up right at the table.
Eliminating: The whole process of peeing or pooping seemed to terrify her. If her diaper was even just a tiny bit wet or dirty, she tugged and scratched at it to get it off and would continue tugging and scratching until she was changed. Later on, she'd get us to keep wiping her repeatedly until she felt things were clean enough. It took up to half a wipe box on really bad days!
Pooping was the worst. After she got to one year old, Jaimie held her poop for days. This was a concern n
ot only because it caused discomfort but also because we knew how unhealthy it was. The entire process—whether her poop was soft or hard—terrified her. We knew whenever she needed to go because she ran and hid and when she couldn't hold it any longer, she cried from the moment she started until the moment the clean diaper was back on her.
Later on, toilet training her was a nightmare. She was well over four before she didn't need the Pull-Ups anymore and allowed herself to poop in the toilet. It got to the point where if two full days had passed without her going, we made her sit on the toilet until she did. Of course that never worked—she sat there for hours if you let her. Then we threatened to use a suppository. At three days, we used one and let me tell you…it took days for her to get over that scene. Then, of course, the cycle continued: a feeling of going, holding it for days, threatening, carry through with the treat, fear of going again…
Sleeping: Again, she never slept well. Even as an infant, she needed movement and “white noise” to fall asleep. All I can say is thank goodness we didn't pay for our water in our first apartment because she needed to be rocked by running water to fall asleep!
Starting at about six months, Jaimie started waking up in the middle of the night, screaming and babbling. Because of her age, we'd assumed it was because she wanted a bottle. But there were nights where the action of picking her up to give her one made her screaming worse. By a year, we noticed that sometimes during these awakenings (as we called them), her eyes were open and she looked around but she wasn't really awake. It was disturbing. By two, Jaimie did things like digging, piling her stuffed animals in one part of her bed, or throwing them out, or even covering her ears and screeching. Once she was able to talk, we listened to the frightening conversations she had with someone called, “The Man” who she said told her that terrible things would happen to me if she fell asleep.
Not Just Spirited Page 3