JJ -- Heather Christensen's 'incredible privilege' and challenge of a lifetime
Heather Christensen gave birth to Jessica Jaylene--"JJ"--on August 24, 1993, at 11:53 p.m. She was delivered three weeks early and weighed 7 pounds, 10 ounces.
JJ's scream filled the night air. Rubbing her eyes, Heather reached over to the crib, trying to sooth her red-faced baby. Rubbing her back, Heather wondered if she, her husband, or baby Jessica would ever be able to sleep through the night. It had been the same routine for the Christensens for two years.
Jessica would hardly sleep through the night, but Heather and Todd didn't think their infants' behavior was at all unusual. When JJ wasn't crying she was very happy and extremely bubbly. She acted from one extreme to the other.
"She was my first baby. I didn't know how first babies were supposed to act. It had been a while since I babysat and I didn't know what to expect with my first child," said Heather with concern in her eyes.
Jessica, known as JJ by relatives and close friends, was a fast and hard baby to deliver. During the first three months of JJ's life, Heather noticed that she would always look out over the heads of those in front of her.
"I always assumed she was looking at angels," joked Heather.
Throughout the first three months of her life, JJ didn't seem like she was progressing like she should. While other babies were sitting up by five or six months old, JJ was acting like she did when she was three months old, and didn't sit up until she was 11 months old
"We kept asking doctors and they said, 'Oh don't worry about it, every child develops at their own pace,'" said Heather, shaking her head.
Listening to the doctor, the Christensens raised JJ the best way they knew how. JJ didn't crawl until she was 18 months old and didn't walk until she was 26 months old. Even when she began to walk, Heather and Todd had to help her by moving or prodding her legs.
Heather and Todd knew their child had developmental issues and thought they could help until another visit to the doctor four years later.
"We took her to the doctor when she was five years old and finally got a diagnosis." Heather's eyes glisten, recounting the story: during the hard and fast delivery JJ's top vertebra got pushed into her brain stem. As a consequence JJ has problems with depth perception, autistic tendencies and hypersensitivity.
"We didn't find that out until three years later when someone told us to take her to the chiropractor. He finally x-rayed her and it was the first time anyone had x-rayed her, and by then the damage was done. He was able to manipulate it back into its regular alignment and things got a little bit better after that, but again the damage was done!" said Heather in unbelief.
Through a mother's intuition, Heather knew her baby was going to be an incredibly strong woman and that she was going to be incredibly privileged to have JJ in her home. "I also think knowing that made the whole difference right there in how I dealt with everything. I think everyone has their own challenges that they grow into and I have grown into mine."
Heather remembers spending many hours bent over the bathtub, washing clothes that had been soaked in vomit, because she didn't own a washer and drier. At the time it was a tedious job, but now Heather looks back laughing, grateful for washers and driers.
"She didn't swallow very much and she had a reflux, so she would throw up every time I fed her," said Heather laughing, making a disgusted look.
JJ was a hard baby, but Heather just thought that was the way it was supposed to be. Many challenges were presented when JJ was born but through the years, Heather learned how to deal with these problems because she didn't know any better. Heather looks back at her experience as a new mother laughing and smiling.
"I felt and continue to feel very honored to have JJ in my home. It was difficult because I didn't know what was wrong with her and I didn't know it was supposed to be this way until later. But I do know that she is very special and very important and I had a witness later that she was my angel sent to help me out. She helps me learn patience and hope and all those things."
JJ is nine years old now, and has the mental capacity of a 5-year-old. Heather tries to teach her new concepts everyday, but it is more than just teaching new things one day at a time, it is a lifetime of teaching.
"It takes a regular child normally a few hours or a few days before they learn something new. But with Jessica it takes a whole lifetime, and this is with continuously teaching her new things every day. So if I want her to be independent, I am going to have to start teaching her new things now. And keep doing it every single day so that she can remember," said Heather.
Heather says the experience with JJ has been joyful and sorrowful. Most of all, Heather remembers the good times she has had with her family.
For the first few years of JJ's life she didn't act like other babies; she was resistant to Heather's touch. Heather had always dreamed about being a mom and being able to cuddle with her baby, but JJ didn't want anything like that. JJ would push her away all the time and screamed at her.
Heather admits the hardest thing about raising JJ has been learning how JJ wanted to be loved.
"It was getting to the point where I thought she hated me. And she always loved her own daddy. Daddy was the one who could swallow her in hugs, comfort her and take care of her. It wasn't until years later that I realized that she has Sensory Integration Dysfunction," said Heather.
JJ has many hyperactive tendencies, and her balance and depth perception are off. She is not aware of her joints, especially in her fingers, which affects her writing ability. JJ is able to write letters and numbers. She recognizes her name and can write the letter "J". She also lacks in her motor skills. She will look at something she wants on the plate in front of her and her brain can't tell her to pick it up.
"She will look at it, but won't be able to tell her hand to reach out and grab it: she has to have instructions from me. 'Do you want that? You can have it. You have a hand. Take your hand and pick it up.' Then she knows she can do it," said Heather.
Because some of JJ's senses are hypersensitive, if someone touches her head or her back with light touches, she is bothered and starts fighting the touch. She knows that someone is touching her but she doesn't know where she is being touched.
"It is hard for me to take Jessica places because she goes ballistic. With her Sensory Integration Dysfunction, you take her to a restaurant, the cool air will get to her and she will get overexcited. The music will also bother her because she can't hear very well," said Heather. "So when you go into places that have fans--Wal-Mart drives her completely insane--or big places like that, she likes going because it is so much stimulus, but that's the problem, it is so much stimulus that she doesn't know how to handle it."
As a full-time student and a father, Todd Christensen has been really good with JJ. Because of JJ's sensitivity to touch, she likes deep pressure and that is why she loves being around her dad. Todd gives her bear hugs and cuddles her by holding her whole body and giving that pressure she needs.
"Todd has taught me a lot about myself and about loving JJ," Heather said with admiration in her eyes. "I finally learned how to give her hugs and touch she likes. I you were to see us today, you would have never known we'd had such challenges."
JJ does well with consistency. She does well when she knows her environment and what's going on and what is going to happen next. Heather creates a schedule for her because she does a lot better when things are scheduled out. Heather says that most of her college peers think of her as a 'control freak' during school or outside of school.
"It is true, I have become a control freak. Everything has to be just so, in a schedule, because of the way I have had to raise JJ," said Heather. "Her teachers have learned this about her too."
JJ goes to Adams school where she is enrolled in classes alongside those who are not disabled. In order to ease the difficulty of learning for handicapped children, the Special Ed program incorporates what is learned in the classroom into the program.
"Her teacher, Ernie Rivers, is such a wonderful teacher. He treats her like his own daughter and they mainstream her into the regular classes," said Heather. "Many times in the past, when I have taken her through the school programs and she is meeting teacher for the first time, the new teachers seem to look at me and say, she is not my project."
Heather remembers going to an Individual Educational Plan (IEP) meeting. There was one teacher who asked her, "Is there anything I can do to help out?" Heather said, "Just love her."
"It was like this light came on inside of this teacher and I said, 'You know what, she is here to teach us.' Then this teacher treated her different from then on and it was like she respected her more," said Heather.
Heather often comments that she feels very privileged to have JJ in her home, and says JJ has been the teacher in their home more than anyone else.
"With JJ in our home, we get reminders everyday of how important people are, period. We don't forget that you are always supposed to treat individual what they are worth."
Happiness shines through
The sound of '80s music drones through the Korea House restaurant, and the smell of soy sauce and fried rice fills the air as Heather tells of the worry and concern she had for Jessica. Side plates of fried rice, teriyaki beef, and kimshee seem to beckon for an approving taste.
While experiencing different spices and tastes, Heather's infectious laugh fills the air. Recalling several experiences, Heather lights up with every mention of her family. Her appearance and manner suggest she is the happiest woman in the world, though she admits the stress in her life.
"My appetite gets very large when I am stressed. Not only do I have to worry about my school responsibilities, but I have to carry out my responsibilities as a wife and a mother of my children, including the responsibilities of raising a disabled child," said Heather through a bite of fried rice and beef.
Heather was born and raised in Erda, a tiny town located on the outskirts of Tooele, Utah. Heather's father owns five acres of land but he is a hobby farmer, growing only what he needed to support his farm animals and eight children. Heather grew up around some farm animals. She remembers being a total tomboy, always jumping fences and scraping her knees.
"I was the arm-wrestling champion in 6th grade, you know. I was a tough girl," she says, laughing.
>From Erda, Heather went to Snow College for two years and graduated with an Associate of Arts degree in 1990. She was 20 years old when she met her husband, Todd, within the first month of attending USU. They got engaged two months later and were married April 5, 1991.
"A year and a half after we got married, we both just stopped going to school because we weren't passionate about it and we didn't like what we were doing. He got a job offer down in Salt Lake and I lost my scholarship because I had a miscarriage. I lost the baby four months into the pregnancy." Heather looks down at her plate.
Jessica was born about one year later. After the birth of their second child, Kiara, Todd had two back surgeries. After the first back surgery, Todd was 50 to 75 pounds heavier and was green and bloated with the liquids they pump into a body during surgery. Heather hardly recognized her husband. At times he would stop breathing, causing a rush of panic to sweep over Heather.
"I was worried that I was losing my best friend," said Heather. "And the first thing that went through my mind beside the fact that I was going to lose him, was how am I going to take care of my kids? I thought, 'No one is going to want me, I just had a baby, I am 45 pounds overweight and I have a child that is disabled.'"
This experience altered Heather's life. After Todd was home and in good health, Heather decided she was going to pursue her education.
After walking away from school 10 years ago with only a quarter left, Heather and Todd decided to go back. Adjusting to the school scene was hard for Heather, but now she welcomes any challenges with open arms. Heather and Todd have set goals for themselves as they have both gone back to school.
"After Todd had 10 years working experience, we realized more what we wanted to do." Heather laughs, adding, "Finally, now we know that he wants to consult and he would like to teach for a while as we build up our consulting business. I would be his technical writer. That is our ultimate goal."
Heather is used to having days that are a lot less strenuous but there are also days that are extremely demanding.
"There are times when I really go insane, completely and totally," she said. "When I am home, JJ is right there with me all the time and it is mostly physical pushing right there on my leg or shoulder. She is anal-retentive and has obsessive-compulsive behavior. She does things over and over and gets caught in loops. It's a lot of mental more than physical work involved in raising her."
Though some days are more demanding than others, Heather made it very clear that her family will always come first.
JJ and Kiara are the best of friends. Kiara feels like she is JJ's protector and just like any other sisters they fight like cats and dogs, but they are so cute when they play together.
"Kiara is seven years old and really looks up to her older sister. She is so good with JJ. She is a little bit of a control freak too, like me; I have probably taught her that. But JJ likes that in her sister," smiles Heather.
Besides their constant schedule there is really no special way to do things around the house. Preparing the girls to go to bed is one thing Heather has learned she just has to do without hesitation.
"There is no special way to brush her teeth or her hair or bathe her, you just have to do it. You prepare her for it in advance so that she knows. If it is a bath or brushing her teeth, I prepare her in advance. If someone is coming over later, I don't tell her until the minute before, because then she will get excited about it, and then she will be anxious about it, and if they aren't there yet, she gets very upset and starts banging her body against things. Then she throws tantrums."
As most parent know, children through temper tantrums, but Heather calls JJ's 'mega tantrums.'
"She is an angel from one extreme to the other. I thought she was hard to handle when she threw temper tantrums when she was 3. She would all-out fling herself at me and kick, hit, scream and scratch. But now that she is 9 she is huge, and so it scares me a little bit. But the tantrums don't happen all the time. Half the time she is very happy and sweet and easy to love."
Advice for parents
Heather read a book called Parents Speak Out. She recalls reading a story that made her heart plummet. One mother, who is a doctor, said, 'We didn't choose to have a disabled daughter. We decided right then and there that we would focus more on our other children.' The comment killed Heather because this woman didn't realize that she had a special child in her house, a child who would teach her more than anyone else.
"My advice is that the special child that you have is there to teach you about life; things that you can't learn in any other way," Heather points out. "They will help you grow and gain more understanding about other people's lives. They always teach you not to judge quickly. She makes me think that there is some reason why a person may have acted rash or harsh toward me today and know that no one is perfect. When I see JJ, I am reminded of that."
Heather knows that JJ is one of the best teachers. If she treats JJ with respect, JJ will in turn treat Heather with respect. JJ has taught Heather a lot of patience. JJ is very strong-willed and will want to do things by herself. With Heather's encouragement, JJ is able to accomplish little tasks like putting on her seatbelt. It is only through love and encouragement that JJ is able to progress everyday.
"I am glad to live in a world where disabilities are a lot more accepted than they used to be. It is hard sometimes, but it is through those hard times that maker her stronger and me stronger. I hope she can forgive me for my mistakes," smiles Heather. "I really hope I can live so that one she will turn to me and say, 'Thank you for being there during the heard times when it seemed we were along. Thank you for having patience when I wanted to do something on my own and I made you wait. Thank you for not getting mad when I push on you because you understood I was frustrated. Thank you for loving me as me.'"