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Gaining Hope through Disclosure

Network, Winter 2004

At 17 years of age while sitting in a classroom at school, Craig Wentzell underwent what he thought was a heart attack but which was actually a psychotic episode. How the school counsellor initially handled that, and how family, friends and school staff all worked together to help Craig ultimately achieve his goal of finishing high school and receiving his diploma, is a shining testament to the barriers that can be overcome when everyone is aware of the needs that have to be addressed. Craig’s accomplishments could not have taken place without a loving family, caring friends, and school staff members who were prepared to make the necessary accommodations. Without Craig’s willingness to disclose his illness, however, these accommodations could not have been made. Today Craig is working parttime from home for a mainstream business. Craig’s mother, Brenda Wentzell, describes the road that Craig and his family have travelled so far.

Brenda, take us through the events that led up to Craig’s psychotic break.

BRENDA WENTZELL: Craig was born with four defects of the heart as well as a hearing impairment, so from day one we were always thinking in terms of physical illnesses as far as he was concerned. He had two open heart surgeries. He had blockages behind the ears removed when he was five, so he has been used to being very forthright with us and with doctors about how he feels physically. About six months prior to his break he had been complaining of severe gut pain and vicious headaches. Our family physician scheduled a series of tests, but nobody thought to say, ‘Craig, what is your thinking like?’ To me he seemed to be going through the normal stages that teenage boys do. He was spending more time alone in his room, and his school work was starting to drop off. Of course his concentration was beginning to decline but we thought he just needed to put some more effort in. He has told me since that he began to feel quite paranoid before he had his break, but thought that was what it was like to become an adult — you were going to have these external fears encroaching on your thinking. During the summer of 1997 he became even more withdrawn, and then in September when he went back to school everything came to a climax.

What happened and what was the reaction at school?

BRENDA WENTZELL: Craig thought he had had a heart attack, that’s how he described it. He said he was sitting in class and he felt everything in his mind freeze. He couldn’t think, couldn’t see, couldn’t hear, and he thought that nobody else seemed to notice that he’d just had a heart attack. So he put his hand up and told the teacher he didn’t feel well and he needed to be excused and then he made his way down two flights of stairs to the guidance council office. When he got there he told the guidance counsellor that he’d just had a heart attack and that he needed to get home, that his name would be in the paper tomorrow and everyone would be talking about him. His guidance counsellor then immediately called me at home and said, ‘Brenda I want to tell you what is going on. Craig is talking out of his head, he’s really not himself, could he have taken anything?’ I was blown away because any call I have had from the school has always been about Craig’s physical health, that’s what we’ve always had to deal with and be aware of. When he was brought home about an hour later he looked at me and said, ‘Mom, I’m fine, I think I just snapped,’ and he went upstairs to his room. His guidance counsellor, who had brought him home, sat down with me and said, ‘Brenda, there’s more to this. You need to look at this program they have in the city.’ Craig’s counsellor had been one of the teachers that had attended an in-service presentation at the school by the Prevention and Early Intervention Program for Psychoses (PEPP), and he recognized in Craig the signs of firstepisode psychosis.

So was that your next step, to contact PEPP?

BRENDA WENTZELL: No, and I realize now that was a mistake. We first contacted our family physician and it ended up being three months before we actually contacted PEPP, but once we did they got him in right away. They told us this is what it is, this is how we are going to treat it, this is what we are going to do for you and your family. It’s going to be a journey but we will be there for you. It gave us new hope. And that was such a huge relief.

At what point did Craig feel that he was ready to return to school?

BRENDA WENTZELL: In late November he began treatment with PEPP and was put on a low dose of an anti-psychotic medication. He returned to school but his academic functioning declined significantly. He couldn’t focus, he couldn’t remember things and he was easily distracted. In the new year [1998] he dropped a course and by Easter he was down to two courses, in a semestered system where he should have been carrying four courses. On the Easter weekend he had friends over with him watching TV. He was determined to still be part of the group and not alienate himself. I was out shopping and I called home for something and Craig said, ‘Mom, you better come home. Something is happening to my brain.’ We ended up at the hospital, where he stayed for four months. They had a difficult time finding a medication that would work for him without elevating his blood pressure, and because of his cardiac history they had to be very careful.

It was August of 1998 by the time he got out of the hospital, just three weeks before school started. He was determined to go back and finish his Grade 12 and graduate. Against everyone’s advice he registered for a full load, but after the first week of school he came home and said he couldn’t do it, and it was all we could do to console him. He was taking the meds, fighting through the fatigue, getting up to go to school, but the expectations were too overwhelming. The deadlines, the term papers, the tests, the bright lights of the classroom, even the movement of other kids in the class. Everything seemed to be closing in on him. He said, ‘Is this it? Is this what my life is all about, what this illness is doing to me?’ And we said no, we’re going to go back and talk to your PEPP psychiatrist.

Craig then got involved in some of the rehab programs at PEPP, we started talking about fitness and interests and hobbies and we took a year to allow Craig to get some rest. As we got closer to the beginning of the next school year Craig said he wanted to try again. He wasn’t happy with the fact that he had never graduated. He’d already tried to go back twice and our concern was that there be every accommodation this time to pave the road for success.

So we all sat down with the PEPP team and said what do we have to do? And we determined that first of all we had to communicate with the school. It was important for them to understand what Craig was up against because mental illness is still an invisible disability. If Craig had a visual impairment or an auditory impairment or a mobility impairment they would have accommodations in place, because those kinds of disabilities are obvious and it’s on the record. But we were talking about a mental illness and we weren’t sure whether the staff knew what he had gone through, how he was coping and what kind of things he was experiencing.

Fortunately the school where he had been taken ill had had an inservice with PEPP, so many of the staff remembered what first-episode psychosis was about. But there were some staff who were worried because this was new for them. Not many kids were going back to school with this at that time. We had heard stories about people trying and failing and just opting out for a different way of getting their diploma — maybe taking a correspondence course or adult education classes in the evening, but Craig was determined to go back to high school.

So disclosing his illness to staff and schoolmates was something he was willing to do?

BRENDA WENTZELL: Yes, in fact when we talked with the PEPP team and he was asked what accommodations he would need, he said first of all he wanted the staff to know what he had. He was very open about that. He was not in any way self-conscious about disclosure. We asked him why he felt like that, because for some people that is very stigmatizing. He said he’d always been honest about his physical illness so why would he not be honest about this mental illness? He believed that if staff and students understood what he was going through he wouldn’t have to explain it over and over.

The second thing he wanted to do was take on a full course load, and we said that’s probably a recipe for disaster. The case manager at PEPP who is a nurse and who really had Craig’s trust and respect suggested that she come with Craig and myself to the school a week before it opened and talk to the vice principal and at least one subject teacher. So we set this up and when we got there we put our cards on the table. The subject teacher happened to be the math teacher and she said she was not familiar with his illness but she admired him for his determination to do this and she wanted to know how she could help. She suggested that Craig visit the classroom with her before school opened and pre-select the best place for him to sit. She told him that if he felt things closing in around him during a class, he was to just get up, walk around, or go into the hall and not worry about asking permission. She gave him his textbook a week ahead so he had time to look through it and also work from home if he had a day where he didn’t feel well enough to come in. She set up a schedule whereby we all collaborated on the telephone once a week to troubleshoot and ensure that things were going well. We talked about anxiety about tests and she helped him overcome that by saying that she would give him an extra day or two when it came to term test time. She really thought ahead.

The other course Craig took was sociology. They were dealing with mental illness that term so he wrote a term paper on psychosis and even took in the pamphlets from the PEPP program and distributed them to all his classmates and said this is what I have and if you have something like this, or you know someone with these symptoms, get help.

The second term he also took two courses, and again he talked to the teachers involved. It took him two years to get eight credits and in June of 2001 he got his high school diploma. It was a long journey and there was one teacher who was quite apprehensive about having him in the classroom, and he ended up transferring to another teacher, but everyone else cooperated 150%. I attribute a lot of the successful outcome to the school — they were very accommodating. I also give credit to the PEPP program. They encouraged him to go back to school when he was well enough. They wanted him to get help, get treated and then get on with his life and not be a permanently disabled person. Craig bought into that.

How did Craig’s friends deal with it when he had his breakdown?

BRENDA WENTZELL: Craig had an amazing group of friends. They sent him cards and gifts when he was in hospital. They would drop in when he had a day pass from the hospital and take him to a baseball game with them and leave early if he showed signs of needing to come home. They were tolerant. They were willing to put up with the restraints his illness put on their activities because he was their friend and they wanted him back. They were so thoughtful in so many ways.

Now that Craig is 23 a lot of those friends have moved on. Some of them have permanent relationships, others have jobs or they are in university, so it’s not the same kind of camaraderie that they had in high school, but they still check up on him and he has two close friends that he maintains contact with and tries to do sporting events with.

The friendships that Craig had were probably what gave him a lot of the drive to get better, because they proved that they weren’t going to desert him even though they had moved on. Craig’s willingness to disclose what was happening in his life meant that all of us — family, friends, school staff — were able to openly discuss his needs and concerns with him and find ways to best accommodate them while allowing Craig to move on with his life. Right from the beginning, PEPP told us that we were all partners in Craig’s recovery. That responsibility challenged and empowered us. We can’t see the end of the road, there will be some bumpy patches for sure, but Craig knows we are all here for him.

The Prevention and Early Intervention Program for Psychoses(PEPP) is a community focused mental health program which provides prompt assessment and comprehensive, phase-specific medical and psychosocial treatment for individuals experiencing their first episode of psychosis. The program is structured around a modified assertive case management model. The intensity of the treatment is guided by the patient’s needs, the family’s needs and the stage of the illness. Located in London, Ontario, PEPP is based at London Health Sciences Centre and affiliated with the University of Western Ontario. The program serves the city of London and Middlesex County, a predominantly urban catchment area of approximately 390,000.

Trudy Gratto, a PEPP Youth Project Worker, has made presentations to almost every secondary school in the Thames Valley District School Board area including Catholic and private schools. She believes that the more education one has on a specific topic or disability or disorder the more appropriately responsive you can be. Teachers in general are taking on a heavier role. They are frequently the gatekeepers with the responsibility of recognizing the signs of mental illness, physical and emotional abuse, and eating disorders. When armed with the right information, teachers can respond positively both in recognizing the signs of distress, and then in working with the student, parents and/or medical personnel to put in place a plan that will help them achieve their education goals. That happens most successfully when student and parents are willing to make full disclosure to the school.

Ms. Gratto describes her work with PEPP as not only having been enthusiastically received by both students and teachers, but also having an impact on students, many of whom have followed up her presentation by telephoning the PEPP office to talk about their concerns.

For more information on PEPP and early recognition of psychosis,

» Return to Network, Winter 2004 – Contents