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A teen’s long journey with fetal alcohol syndrome
Bob and Angie Lipscomb with Jordan.

From hurt to help  |  A teen’s long journey with fetal alcohol syndrome

The year had been a difficult one for Jordan and his parents. The teenager had endured four in-patient hospitalizations, two out-patient hospitalizations, and more than three weeks in a residential facility during 2011.

Nothing the doctors and therapists tried seemed to work. Jordan’s future did not look bright. But his mother was not ready to give up just yet.

“We’re going to do whatever we can,” Angie Lipscomb told her adopted 14-year-old son a week before Thanksgiving in 2011. “We just need to get you out of here right now. It’s going to be OK.”

As a young boy, Jordan had been diagnosed with Fetal Alcohol Spectrum Disorder (FASD), but doctors and other medical staff struggled to find effective and appropriate treatment options.

 

Challenging family conditions
Jordan was born in September of 1997 and stayed with his biological mother until he was 17 or 18 months old.

In his already brief life, Jordan had experienced an often chaotic household and lifestyle. His biological mother worked during the day, and her boyfriend worked at night. During the day, when the boyfriend was asleep, Jordan had no interaction or stimulation: no TV, no radio, little human contact.

On the weekends, his mother would take Jordan with her when she attended parties and other late-night activities.

Jordan’s mother eventually ran into trouble with the law and ended up in jail. Upon her release, she made the decision to give Jordan up for adoption.

“[Bob and I] knew some people that actually had adopted Jordan’s sister, two years older than him, and also adopted his cousin,” Angie said. “[The couple] knew that we wanted to adopt. [Jordan’s biological mother] had contacted them when he was about 17, 18 months old. At that point, she said that she was going to give him up and wondered if they wanted to take him.”

The couple knew that the Lipscombs had an interest in adoption, although they were still early in their decision-making process.

“We had just really started talking about adoption and everything, and then this kind of came right up in our lap, in a way,” Angie said. “You become attached before you really know anything.”

The implications of not knowing everything would become evident in the first several months after the adoption.

 

Reactive Attachment Disorder
The Mayo Clinic describes Reactive Attachment Disorder (RAD) as“a rare but serious condition in which infants and young children don’t establish healthy bonds with parents or caregivers.” It’s a potentially lifelong condition where those who suffer from it constantly struggle with the inability to develop long-term relationships.

In Jordan’s case, the Lipscombs noticed the symptoms nearly immediately after they adopted him.

“I remember when we first came up [to Minnesota] to meet him, he fell down and he hit himself up against the wall,” Angie remembered. “He didn’t cry; he didn’t whimper; he didn’t make a noise.”

Because of his lack of bonding as an infant—no one to comfort him, no one to interact with—crying wasn’t an effective outlet for Jordan. So he didn’t cry.

“The early years were really rough because he wouldn’t want to sit on your lap for more than, like, two or three seconds, and then he’d push you away and then he’d get down,” Angie said. “It was probably a good eight years before he realized we weren’t going away.”

 

False diagnoses
The Lipscombs spent the first several years of Jordan’s life in Kansas City. Before he was 4 years old, Jordan was self-hurting. He would also swing between emotional extremes.

“He would run around and he would either be laughing and giggling and running through the house and you couldn’t settle him down, or he’d be literally on the floor sobbing, saying, ‘I hate myself; I want to die,’” Angie recalled.

The couple had no idea how a child so young could even think in that manner.

One doctor, trying to diagnose Jordan’s behavior and outbursts, believed he had Early Onset Bipolar Disorder.

On May 1, 2002, before he was 5 years old, Jordan got his first dose of anti-psychotic medicine.

“It was the first night he went to sleep without a three-hour crying fit,” Angie remembered. “Literally from the time we got him, he would not go to sleep without three hours of something.”

After the couple moved to the Twin Cities shortly thereafter, a new doctor believed Jordan had ADHD and didn’t believe someone could be diagnosed with Early Onset Bipolar Disorder at such an early age.

The new drugs they prescribed him didn’t work well, and Angie and Bob describe that year as one of the worst they have ever been through.

 

A measure of hope
In kindergarten, the Lipscombs regularly received calls from the principal telling the couple that several teachers had to chase Jordan all over the school or that he had locked himself in the bathroom or that he had disappeared for 45 minutes and no one could find him.

He was even self-hurting, scratching his face and arms.

Jordan’s behaviors were so out of the norm that no one had an accurate picture of what was causing them.

“It was very disheartening for many years,” Angie said.

The couple continued searching for the right doctor and the right diagnosis that would reveal what was plaguing their son.

After their initial visit with the doctor who diagnosed Jordan with ADHD, the Lipscombs went out of their insurance network and saw another doctor who said, “I really think he’s affected by alcohol,” Angie recalled. “Is there any way you have contact with the family to know if the mom drank?”

They may not have known it at the time, but this revelation would start to put everything in place.

Fortunately, the couple was able to contact the birth mother who admitted that she drank during the first three months of her pregnancy, not knowing she was expecting a baby. Several years later, the mother also revealed that she had used cocaine during her pregnancy and that she also suffered from fetal alcohol syndrome.

The problems caused by Fetal Alcohol Syndrome (FAS) vary. It can include physical deformities, learning disorders and behavioral problems, as well as other difficulties, according to the Mayo Clinic. While the extent of the problems varies, the Mayo Clinic is among leaders in medicine who observe that the “defects caused by fetal alcohol syndrome are irreversible.”

While the correct diagnosis was a step in the right direction for Jordan and his parents, many difficulties remained, such as how to treat the disorder with medicine and how to understand and deal with the learning and behavioral challenges.

“[Those with FAS] don’t learn by their mistakes, either,” Bob said. “You have to repeat things not only 100 times but maybe 200 times, and then they might get it after that. With Jordan, in kindergarten he would learn his ABCs and with his brain damage, with the fetal alcohol, he would know it on Monday, but Tuesday he wouldn’t know the ABCs. We couldn’t understand why that was.”

 

Medication and faith
The next several years were filled with more challenges for the Lipscombs. Different doctors and different treatment options often collided. One doctor took Jordan off all his medications and placed him on lithium, which helped noticeably in the short run. Unfortunately, after a few years, the lithium had begun to negatively impact his kidneys.

“That kind of started a downward spiral,” Angie said. “They tried to re-medicate him with something different to take the place of the lithium. He would sit and rock and scream and yell and kick things and throw things and tear things up …. It was like an elephant-in-the-room kind of thing where we would be on the outside of the perimeter of the room trying to keep him from tearing things up. There were times where we would both be wrapped around him to keep him from hurting himself.”

Through all this treatments, the Lipscombs learned that medication often has an opposite effect on those with FAS. What is supposed to calm often has the opposite effect.

The Lipscombs would also learn that 2011—when Jordan would turn 14—would be a pivotal year for them.

His numerous hospitalizations that year had finally brought everything to a showdown moment, one where Angie declared that Jordan’s best chance for success lay outside of an institution. Their decision was one not shared by all medical professionals.

When the couple brought Jordan home on Nov. 18, 2011, they knew he was not going back to a hospital or any other institution.

“We knew it wasn’t going to be easy,” Angie said. “We knew we were going to have outbursts and everything. We just had lots of people praying for us, lots of people praying for him and a determination that it was going to get better.”

The church they attended had known Jordan since he was young, “and they went through a lot of these things with us—the pastor and different people,” Angie said. “The prayer that happened through that church and through our faith in God and just feeling like God was in control, and it felt like He nudged us that we needed to get Jordan out of the hospital.”

 

On the right path
Jordan was now 14 years old and on a new journey, this one away from institutions and toward more understanding and success.

The Lipscombs contacted the Courage Center, an organization that helps those with disabilities. The Center assisted Jordan with occupational and speech therapy.

When he had successfully worked through their programs, the Courage Center staff recommended LearningRx, an organization that works specifically with training the brain.

“He wanted to quit,” Angie said about Jordan as the intensive program got underway. “He wasn’t used to people sticking with him. He was used to people giving up on him and moving on or letting him get out of doing things.”

However, the LearningRx staff gave Jordan three rules: You can’t put your head down; you can’t quit; and you don’t say “I can’t.”

“As time went on, he started realizing that he could learn,” Angie said. “His self-esteem started to go up. He started looking forward ….”

Within three days of the new program, Jordan was able to recite all 44 U.S. presidents from memory. A few days later, he could still recite the list—forward and backward.

By the end of his first semester as a freshman, he had received all As on his report card. At the end of his second semester, he again received all As.

“He’s talking about college, and he’s talking about things he wants to do in life,” Angie said. “Where before it was ‘I’m a bad kid; I don’t deserve anything.’”

 

Encouraging others
Through their journey with Jordan, the Lipscombs have learned to seek out help when in need. They encourage others in similar situations to do the same.

“[I would] encourage them to talk to their pastor,” Bob said. “Open up to their pastor, to their church or to their neighbors or to their families. If nothing else, if they are in a need, ask for help.”

Angie believes that kids “act out” for a variety of reasons, and it’s important to understand those reasons before trying to treat them.

“A lot of times our kids act out [with] behaviors because of something they can’t understand or process,” she said. “We need to find the root of it.”

Most importantly, however, the Lipscombs learned that God was with them during their difficult journey—and will continue to walk with them in the years ahead.

“Prayer and that still, small voice that you hear is telling you not to give up and keep going,” Angie said. “That’s God’s way of telling you He is with you, and He is going to help walk you through whatever it is that you’re facing in life. We all have trials and tribulations. We’re in good company.”

 

— by Scott Noble

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