We Tried Normal – 2e Family Stories: Chapter 5

We Tried Normal – 2e Family Stories: Chapter 5

Jeremy

Despite knowing their son, Jeremy, was gifted, Anne and John were confident in their public school and felt it was important to support their school community. Jeremy was an early reader with an insatiable appetite for knowledge. He wanted to know all the details about everything he encountered, but would get extremely frustrated if he couldn’t access the information on his own. Anne acknowledged that Jeremy had never been a good learner in a typical classroom. From day one of kindergarten, he hated the worksheets and the rules. He wanted to work on his own projects. He was bored with the content and frustrated by the whole learning environment. He did not like art and was distressed at how much art was in the daily curriculum.

books2A few weeks into the school year, when Anne picked up Jeremy from kindergarten, he had a big goose egg on his forehead. The teacher told Anne that he had started to violently bang his head against a wooden bookcase and hit his head several times before they could stop him. When they restrained him from hitting his head, he told them he wanted to kill himself. Even though Anne and John knew this behavior was unusual, they didn’t realize at the time how different their son was from a typical kindergartener. He was their first child.

Jeremy began regularly to attempt to hurt himself; head banging, biting his arms, and slamming his body into walls. He mentioned wanting to kill himself several more times over the next few weeks. Anne took him to their pediatrician who referred them to a pediatric psychiatrist. After lengthy interviews and testing, Jeremy was diagnosed with anxiety disorder and depression, and prescribed SSRI[1] medication. Anne and John began to take Jeremy to see a therapist and solicited support from Jeremy’s teacher. Anne said they were lucky. Jeremy’s kindergarten teacher had a son who was diagnosed with depression, so she was empathetic and tried very hard to accommodate Jeremy’s needs.

During the next two years of his elementary education, Jeremy had mood swings and bouts of depression. His ability to behave in the classroom was erratic. During this time, Anne reported that his first grade teacher was willing to accommodate his high intellect and differentiate the curriculum, which often kept Jeremy engaged in his work for long periods of time. Anne also worked tirelessly to try to resolve issues at school and support the teacher in her efforts to help Jeremy.  This allowed them to complete the school year without major incident. However, Jeremy’s second grade teacher was not able to work with him successfully and he began to be labeled as a serious behavior problem.

As his good days became fewer and farther between, a student study team of teachers, administrators, and the school psychologist was convened. The school personnel recommended that Jeremy be given another psychological and intellectual evaluation by the school psychologist, to see if he could be accommodated under an Individualized Educational Plan (IEP), which would allow them a broader range of intervention options.

Once his IEP was complete, Jeremy was designated as emotionally disturbed and determined eligible for special services. He was moved to a special education classroom full time. Rather than improving the situation, Jeremy’s behavior took a turn for the worse. He refused to do any of the work, was defiant with the teachers and classroom aides, and verbally abusive to his fellow students. Eventually, he began to regularly refuse to go to school. Anne and John increased his therapy to two days per week, but his behavior continued to deteriorate. On two occasions, he was physically violent and aggressive when he felt he was backed into a corner. More and more Anne and John turned to their psychiatrist for solutions.

As Jeremy’s behavior problems increased, so did Anne and John’s marital discord. John began to distance himself from Jeremy and had lessening interest in meeting with therapists or participating in Jeremy’s care. Anne pressed John to continue to participate; eventually, John moved out of the family home.

After John moved out, Anne decided to look for a private school for Jeremy, in hopes of finding some support for herself and her son. She tried to get Jeremy and his younger brother, Liam, into two private schools for gifted children. Both schools told her that Jeremy’s issues were outside of their ability to accommodate; his behavior issues were just too volatile. “Looking back, I understand that those schools were probably right, he was too much for them. But at the time, I was very hurt by their rejection of our son and felt very alone.”

Anne was extremely frustrated that no one could see through Jeremy’s behavior to recognize that he was very intelligent. She felt their judgment of her son was causing him to miss out on any chance at an appropriate education. To make matters worse, Liam was accepted at both schools. When John found out that Jeremy was rejected, while Liam was accepted, he began to focus all of his energy on Liam. Anne sighed, “It was like their father was saying, ‘this one is broken, let’s move on to the next one,’ which of course was devastating for all of us.”

Unable to find an educational alternative, Anne left Jeremy in public school. She describes the remainder of his elementary years as a blur of emotional upheaval and devastating failures. No matter how hard Anne tried to find a way to make the system work, Jeremy never really connected to his learning at school or felt any desire to comply. John had distanced himself to the point that Anne felt she was Jeremy’s only advocate. “At this point, it just felt like everything in his life was compromised. He wasn’t ever really happy or connected to anything meaningful. I think I was the only stable factor in his life during that time.”

But providing that stability for Jeremy was difficult for Anne. She believes her career was compromised, as she had to spend so much time dealing with Jeremy. She often had to leave work early to pick him up from school or work from home because he refused to go to school. “I have regrets about not having the career I dreamed of having; but I felt like my child’s life depended on him believing I was there for him. I think I was all he had, back then.”

When Jeremy was at home he was less anxious and angry. He was also more connected to learning, but in his own way. He spent his time reading and listening to podcasts or watching vlogs, Youtube, or Ted Talks. He still loved math and science topics and had utilized the Internet to teach himself in his areas of interest. Anne recalls that, during that period, the only times she ever saw Jeremy animated was when he was talking about some new concept he had learned about on the Internet.

As Jeremy entered middle school, Anne asked the school to allow Jeremy to take advanced math and science classes, as those were areas in which he excelled. Anne hoped that if Jeremy were intellectually challenged in these areas, he would want to learn and attend school once more.

However, due to his existing IEP and his poor school performance, it was decided that Jeremy should remain in a special day class. Anne felt that this was a recipe for disaster, since he had not fared well in his previous special education classes. She knew he had been extremely bored and frustrated, which inevitably made his behavior worse.

“I always thought that the education model in most special ed classrooms is a very strange model. It is like, ‘How can we best contain and control kids who can’t be contained and controlled easily?’ It is all about compliance. It seems like delivering some kind of education to them comes last. And when it comes to the special day class, all they are getting is more about doing worksheets and complying with the aides. You know, if you sit still and do a problem you will get some M&Ms. Nowhere are the kids inspired to learn or be excited about acquiring knowledge.”

Anne asked if the district would pay for Jeremy to attend a private school that could better handle his needs. The school administration refused and assured Anne that they could accommodate Jeremy with a one-on-one aide and differentiated curriculum. Meanwhile, Jeremy began to cut and burn himself. His therapist and psychiatrist told Anne that he might need to be admitted to the hospital. They continued trying to stabilize him so he could remain at home. Anne began to feel hopeless; she wondered if anything was going to be able to save her son.

stormOne evening, Jeremy had a psychotic break. He began to scream and thrash around, crashing into walls and trying to jump out of windows. Anne struggled to restrain him and try to talk him down, but he broke free, locked himself in his room and tried to hang himself. Anne broke down the door and screamed at Liam to call 911. The police arrived and Jeremy was restrained and taken to the hospital. He was admitted to a psychiatric hospital where he stayed for several days.

Anne choked up, “Liam was so traumatized. Not just by that one event, but always wondering if Jeremy would continue to find his life worth living.  I knew that Liam and I would have to find the strength to accept it if he couldn’t, but I knew it would be extremely hard.”

Anne believes that not nearly enough has been written about the challenges of being the sibling of someone with extreme needs. “Liam had his own complex needs, to be sure, and he is definitely a person of unusual capacity. Not many of us, however, grow up in a situation where we never know from one minute to the next whether our brother or sister will lose control in a blinding rage and hold a knife to their throat or jump off a BART platform. I couldn’t quite imagine what it would do to Liam’s life if Jeremy killed himself. I was doing everything I could, both to make sure that Jeremy survived, and to try to have a little enjoyment in our lives, so Jeremy’s illness didn’t make Liam’s life too grim.”

While hospitalized, Jeremy was diagnosed as having bipolar disorder. The psychiatrist at the hospital prescribed a change in medication and told Anne that SSRI medications have side effects that can increase self-harming behavior in children with bi-polar disorder. Anne felt an intense sense of relief that there might be some treatment that would help Jeremy.

Once Jeremy was out of the house, Anne realized how much Liam had been impacted, “It’s so intense living with a brother who has those extreme mood swings. It’s completely different than growing up in a family where your sibling is more normal. I think he must have post traumatic stress disorder from having to go through all this.”

Anne divulged that it had been exceptionally chaotic during this time period. The stress in the family was always high and the unpredictability of Jeremy’s behavior had severe impact on their daily lives. Eventually, the hospitalization and therapeutic interventions began to have a positive impact. Finally, there was a point when things seemed to smooth out.

“We were still just grappling with so many unknowns at that point. I don’t remember what it was, I think we had just started him on lithium, but things got a little better and John said, ‘Well, maybe we’re out of the woods now.’ I looked at him, and just snapped, ‘We live in the woods.’  I was just like, there’s no ‘out of the woods.’ You hope for a clearing. You hope for multiple paths. You don’t really know where you’re going, and you know you can’t stay in the same spot forever. But one thing’s for sure, you are never getting out of the woods.”

The change in Jeremy’s medication, which included mood-stabilizing medication, toned down his behavior in every way. While Anne admitted it was such a relief to smooth out the roller coaster ride of highs and lows, she was not prepared for the deadening of his personality and abilities. “No one told us that treating his bi-polar disorder would take away so much of what makes him unique. A lot of the real inspiration and creativity, and the unique way of seeing the world, is somewhat related to the illness. Nobody told us that treating his disorder would alter who he is. We would have medicated him anyway, because it was absolutely necessary, but it would have been nice to be forewarned about the tradeoffs.”

Even though Anne was sorry to see some of his brilliance dulled, she also knew it was necessary for the survival of their whole family. “Everybody always acts like the manic phase is so productive and creative. And I guess I used to as well. It was when Jeremy’s brilliance shone the brightest and I would be so proud. You know it is like in the cartoons when there’s a light bulb going off over their head and everyone is so excited; but now I know, when you have a kid with bipolar, you’re like, ‘Oh shit, he’s got an idea, turn it off, turn it off.’ We were just looking for the dimmer switch because when he got an idea, it was certain that you would be dragged into an exhausting marathon.”

There were other issues that arose as Jeremy stabilized. After he was on the mood stabilizing medication he went through a time when he was relatively non-suicidal. Anne said she was starting to let down her guard a little, and then one day, out of the blue, he asked, “What is the point of this? Why do people even want to exist in a world like this?”

Anne recounted, “Jeremy was deeply ruminating on the purpose, the point, the sort of nonsense of it all. Then he went on to talk about people who’ve had near-death experiences and how they describe death as being incredibly wonderful and how it was kind of painful to return to their body. He mused, ‘Why would anyone choose to return if that’s the case?  I don’t understand.’ I just looked at him and choked out, ‘Well, I guess maybe love.’ I desperately hoped he would think about how his actions might affect those people who love him.”

depressionAnne mused that the state of the world really affects Jeremy, “He doesn’t see that this is a beautiful place when we drive by homelessness and hear about depravity. He has always been thinking about it, even at three, he was thinking about it.” She was grateful that Jeremy’s therapist had some experience with 2e children and understood that they can have existential depression. Anne believes that understanding was critical to Jeremy’s connection to life, as tenuous as it was.

Even though Jeremy’s behavior had improved to some degree, his psychiatrist recommended that Jeremy not return to public school, but, instead, be admitted to a therapeutic school. At this point, the school district agreed to pay for the private therapeutic school. The private school began to make a difference right away. They had structures and routines that were designed for students in crisis, the school personnel were trained in best practices for these students, and academic rigor was not sacrificed for accommodation. Anne revealed that when Jeremy started at the therapeutic school, she was not even concerned about academics; she just wanted to make sure that nothing triggered or destabilized him.

As Jeremy began to integrate into his new school, Anne hoped that she might be able to help them see how gifted he was. “When the doctors and teachers look at your kid, they say, ‘Here is this kid with this disability and these behaviors, who should get this treatment or these accommodations.’ But they never see the kid through your lenses; you know the great, smart, funny, capable parts of your kid. I think the 2e term is important because it can help them to understand how those lenses can overlay each other. From a strategy perspective it is helpful to hand people an explanatory model of your kid, their challenges and abilities. That makes it hard for them to just say, ‘Well this is a kid who doesn’t want any help or doesn’t have that aptitude or ability.’ You can show them that this kid is very capable, he just needs the right support.”

Anne felt the school was also providing her and Jeremy with a community. The family group therapy sessions introduced her to other parents who were going through similar experiences with their children. Jeremy was beginning to form friendships with kids who were like him at this school. He felt like there were people who finally understood what he was going through, both with the disability and the ability issues.

It was a new experience for Anne, too, to be accepted as a capable parent and not judged for her son’s behavior or her perceived lack of parenting skills. “I wish people would show a little bit of grace about our kids. Maybe they need to spend more time with our kids so that they can realize how lucky they are to be able to have a kid that they don’t have to worry about all the time.”

One of the mothers Anne met in the group therapy session had a son who had committed suicide. She told Anne when her son first started talking about suicide, her other kids totally took a backseat. “She told me, ‘When your job is to see that the most desperate one is all right, it can be all consuming.’ Her son killed himself at 18. She had struggled for seven years, but as soon as he became an adult, he killed himself. She kept him alive by putting him in the center of the universe for those seven years, at the expense of her other children, and he did it anyway.”

Anne felt that story illustrated her deepest fears. Over the years, she has tried to work through this fear in many hours of therapy. She admitted, “I finally came to realize, that when your kid is suicidal, you are so scared, you could do everything, and he may still do something that you can’t control. All you can do is love him, and have his back, and get him all the help, but at some point it is his struggle.”

tunnelAnne recounted that when Jeremy’s depression was the most severe, he would say he was going to dig a tunnel under their house and just hibernate underground to get away from the world. Anne always felt that it was a metaphor for death. As Jeremy began to improve, he started to say that maybe he would live the rest of his life in the basement instead of underground.

Anne laughed about this, “You know most parents fear their kid will just want to live in their basement forever, but for me it was like he was beginning to want to live. I was like, ‘Oh my God, you are above ground. Congratulations.’

[1] Selective Serotonin Re-uptake Inhibitors, one of a family of anti-depressant medications.