Meanwhile, Craig’s older brother, Scott, was having significant behavior problems (related to ADHD and to his unique ways of perceiving the world). We began family therapy initially mostly because of Scott’s difficulties and also because the boys’ bickering was becoming more intense and less amenable to behavior management strategies. Within 2 months of initiating the therapy, it became clear that Craig’s difficulties were more serious than Scott’s.
Craig was in 2nd grade at that time. He functioned OK in school, but when he got home, he was out of sorts and often took out his school frustrations on us. His performance in school was uneven but always passing, usually average. He was evaluated by a psychologist and seen by a psychiatrist. A variety of medications were tried in an attempt to lessen Craig’s anxiety and to improve his behavior. He had a favorable response to new meds for 2 to 3 weeks; but then his low frustration tolerance and his angry outbursts and periods of rages would resume.
He became very destructive, and over the course of a year, we removed pieces of his furniture until his room was left with only a mattress. He knocked out windowpanes and put a 20” diameter hole in one wall. He broke a number of alarm clocks, portable tape players, and furniture glass. When he refused to stay in his room during his outbursts, we had to restrain him to prevent him from hurting himself or others, and from destroying property or running off in a rage (because we feared for his safety when he was in such states).
He was hospitalized for three weeks when he was 9 years old. That was the first time I saw Dave, my husband of 19 years, cry. We were told that Craig possibly had a dissociative disorder. Our family psychologist likened his behavior to post traumatic stress disorder. We were referred to another psychologist who hypnotized Craig. Craig related an incident when he was 3 when a bigger 3-year-old at daycare “made him bite his penis.” It was hard for us to believe this incident could be responsible for the incredible dysfunction Craig was experiencing, but we were told that even minor incidents can have far reaching effects. We were told that he probably had an inherited predisposition to brain biological problems.
Meanwhile, we explored other potential causes for his angry outbursts and violent rages. Our search took us to the Princeton BioCenter and to two different ecological allergists in Northern Virginia. We explored the role of food allergies and determined that when Craig ate sugar or tomatoes, he had negative changes in his mood and episodes of rage. We explored the possibility of a seizure disorder through EEGs (regular and 24 hour). He also had an MRI. He was seen by three pediatric neurologists (each aware of the others’ evaluations).
We worked with the traditional medicine professionals and with the alternative approaches (allergy shots, diet restrictions) coordinating his care and communicating to his physicians the treatments he was receiving. Craig saw 4 different psychiatrists in 8 years for outpatient treatment. We had to switch to a new doctor on two occasions when the psychiatrist currently treating Craig stopped practicing.
Craig was hospitalized 11 times. Some of those times were for only a day or weekend. One hospitalization was for 2 months and his last hospitalization was for 3 months.
Dave and I considered living apart, he with one son and me with the other. We were told that we might need to have Craig live away from home for a period of time if he became too difficult to manage. The boy’s bickering was intolerable. We had enjoyed a happy family relationship (with the usual occasional – though intense- bickering that often occurs with brothers who are close in age) until Craig started having difficulties. We went on weekend trips and vacations at the beach; spent weekends together; played games, watched the boys play sports at the YMCA, etc. Now, not only did we not do those fun things, but our whole life became very chaotic. We all walked around on eggshells; fearful that we would inadvertently set Craig off and he’d fly into one of his rages. We were unable to do the family activities we used to enjoy because Craig no longer agreed to participate.
I sought council from Samahria Kaufman of the Option Institute. She advised me that I could not control Craig’s behavior; Craig’s responses were within his control, not mine. She suggested that Craig might need to live away from home in a foster home for a period of time. Both of these comments helped me rebuild my self-confidence and also provided a pressure valve. (Samahria had spent 2-3 years one on one with her son, who carried a diagnosis of autism. Through her work and the work of the rest of the family, Raun emerged into a bright, normal (actually genius IQ) young man. I felt that if this woman who had devoted so much of her time to her child said that I could not expect to be able to control Craig’s behavior through my actions and that I may need to consider a period of foster care, then I didn’t need to be so hard on myself for our inability to control or "fix" our family situation).
We sought assistance though our county’s interagency team. We received help that allowed us to keep Craig at home with us. For one year, we received respite services 5 days a week for 3 hours plus transportation to and from school for Craig and Scott. Unfortunately, along with the assistance, we experienced being blamed by the owner of the respite service when he informed the team that his agency’s inability to manage Craig was a result of our not following through with behavior management instructions. Fortunately for us, our family psychologist attended that particular meeting and he told the team that not only could we teach and apply all of the behavior management principles and techniques, but Craig could also. The reality was that there were many times when the best behavior management strategies had absolutely no effect on Craig’s behavior.
It was difficult for us to come to grips with the reality that Craig presented himself to others as a sweet, well-behaved young man, yet he was hateful and destructive at home. Our psychologist suggested that he used every ounce of self-control he could muster when in public, and then exploded once in the safety of home with people who loved him no matter what. By 6th grade, however, Craig was unable to hold it together at school and was suspended when he kicked a guidance counselor. He was placed in an alternative school where he finished out that year and all of the next. He returned to public school in 8th grade to a special self-contained class. He was hospitalized at the end of his 8th grade.
In February of his sophomore year in school, he had a hard time with his moods and because outpatient treatment was not resolving his problems with mood swings and episodes of deep depression, he was hospitalized for 3 months followed by 3 months of residential treatment. During this time, he learned to manage his own behavior more effectively. He came home after those 6 months of treatment a more mature boy/man. He made good friends at school, went to the Homecoming Dance and the Prom, and participated in special activities with friends. He learned to drive. He got a job, which he took very seriously.
Craig was my friend, my companion. He called me at work each day. While I was bald from chemotherapy, he would call and ask, “Is there a beautiful bald woman there?” He came to my hospital room with his date prior to the prom so I could see them in their prom clothes and see them pin on their corsage and boutonničre. I took Craig for practice drives. We went shopping together. Each day when I would pull up in the driveway, Craig would rush up to my car door asking, “Can we go out tonight?” I miss his “what can you and me do together?’ There were times I felt smothered, as Craig demanded so much attention. However, those feelings pale in comparison to the loss I now feel.
Craig threatened suicide many times over the years, sometimes verbally; sometimes through notes he would give me. He cut on his wrists and arms a number of times, though never in a way that put him in any danger. We kept meds locked up; and when things seem especially bad, we locked up the knives and hid scissors. Craig also banged his head or hit himself (to feel better, he said). Craig put a belt around his neck about 2 months prior to his death. He immediately came to tell me what he had done and how badly it had scared him. We consulted with his psychologist and psychiatrist. Craig promised he would never do that again. I believed he wouldn’t because he had been so scared after his first try.
We worried that Craig might kill himself during the interval between school and when we got home from work. We consulted with his psychologist. How could we possibly keep Craig safe from all the different ways and opportunities for suicide without being with him every minute? It would be impossible. He did not believe Craig would intentionally kill himself, but said he perceived the danger to be in Craig’s impulsiveness. Craig might do something impulsively and not be able to stop. When he was about 12, he jumped out his 2nd story window. Thankfully, he was unhurt, just scared.
He ran away from the house a number of times – sometimes on foot and other times on his bike. I worried that he would be hit by a car. He ran away from us in a mall in New Jersey when we were there for a visit to the Princeton BioCenter. I had to pull the car around to one of the mall entrances and Dave had to grab Craig and carry him to the car. We worried that we would be reported for suspected child abduction, especially since we were driving in a vehicle with an out of state license plate.
On June 23, 1998, Dave called me at work to ask me if I had heard from Craig yet. Craig had called him (maybe more than once) asking to be taken to get a haircut that night. When I got home (late after a frustrating day at work), Craig asked me to take him out for the haircut - having not convinced Dave. Craig's hair was maybe 1/2 inch long. He was in one of his driven, irrational "got to have it - or got to do it" modes. From past experience, we knew that he was likely to continue in that mode even after a haircut. I told him that I would not take him out that night. He was very angry with both of us and accused us (and everyone) of not caring about him. I told him that I loved him very much and I was not going to take him to get a haircut that night. He went to his room and cranked up his music. Dave spoke to him through his locked door about a half-hour later. Craig did not answer. This behavior was not unusual for Craig. (He would usually come downstairs later and either continue where he left off or apologize for his behavior and/or express his despair at how he felt and how he sometimes treated us).
An hour or two later, Dave checked on Craig again, this time forcing the lock. Craig was dead.
We were..... we are devastated. Craig (the "real" Craig, not the Craig tortured mercilessly by his brain chemistry) was the sweetest, most considerate, loving child one could hope to know. And now he is gone from this world. And we miss him ever so much. Life is easier, much easier. But life is not better. Life is sad.
We struggle with guilt as well as with our profound sadness. Concerning the guilt, I remind myself that we did the best we could at the time; had we had any inkling that that night was any different from so many others, we would not have left Craig alone. Sometimes that helps. Sometimes it doesn’t. Craig filled our lives with laughter and joy. I miss his hugs, his jokes, his conversations, and his presence. I take comfort in my belief that he is in a truly better place where there is no mental illness - and in the thought that we will be together again when I leave this life.
I would like for people to know the following about Craig and our experience:
Craig was sweet, kind, talented, generous, loving, and caring; and he had an illness that devastated him and our whole family.
While our family was “dysfunctional” for many years, the dysfunction was a result of Craig’s illness not vice versa.
While counseling and behavior management are important, they don’t cure biochemical illnesses. To suggest otherwise is insulting and destructive to the family. Individuals and their families do need support, which may include counseling and behavior management suggestions, but these need to complement medical treatment.
Kids may behave very differently in different situations. Because one does not observe the reported behavior, it is not any less real or troublesome. In fact it is even more devastating because the parents ask themselves the very questions professionals ask; is it a problem with the home, with the family since the out of control behavior occurs only with the family.
Living with someone with a serious mental illness is absolutely exhausting and very demoralizing. It is hard not to feel like a failure when your child is not happy, is suicidal, in not functioning well.
First of all, I want Craig back on earth. I want him to be alive.
Barring that, I want regular visits from Craig.
If not regular visits, I want periodic visits.
I want at least one very real visit where Craig clearly lets me know he is happy.
I want to get to a place where I remember Craig happily; remembering all the happy times.
I want to get to a place where my attitude is one of gratitude for the years I had with Craig.
What a treasure he was!
Beth Tolley 9/14/00
Craig Stewart Tolley 7/11/82 - 6/23/98