When I was a child, there were three things that made me feel frightened: photographs and film footage from the early 1970's (a whole story in itself), severe weather, and being around people that suffered from a mental illness. As I grew older, the first two "fears" dissipated, but the third one stuck with me, although with less severity than it had in my youth.
The first encounter I remember having with someone who had a mental illness was when I was in elementary school. I was in second grade and the school had a program for kids/young adults with different types of mental and physical disabilities. My first real memory was of a young man who was probably about fifteen or sixteen at the time. He had a severe mental disability. For whatever reason, he was always roaming the hallways by himself, and if another child was there without a teacher (going to restroom, office, etc.), he would chase them down the hall, screaming whatever it was he was trying to say. Inevitably, this led to many tears and fears on my part, to the point that I didn't want to leave the classroom alone. As the years went by, I overcame the fear, but still felt uncomfortable around people with mental illness.
Healthy and bright – what more could a mom want?When my oldest son was born, we were so excited. It was pure bliss… until we brought him home. I nursed because I thought that it would be the healthiest for him, but he had a voracious appetite and I couldn't keep up. I had to quit nursing when he was three months old. During his first six months, he had a terrible time settling down after a feeding. My husband would have to walk around with him for what seemed like hours. As a baby, he had problems entertaining himself, was very cranky, and just all around difficult. But we didn't realize it until our second son was born and caring for him was a piece of cake. Now you may be thinking our first son had a developmental disability, but that was not the case. He reached all his milestones, some one month early, and he could speak a little on a telephone at about fifteen months. So we thought that we had been blessed with a very bright child. Healthy and bright – what more could a mom want?
As he got older though, we started noticing behavior patterns. At first we thought he was just spoiled. Whenever he didn't get his way, he would have a complete fit. I remember when he was two and a half, he threw a dining room chair at me because we didn't have any Raisin Bran. Our pediatrician sent us to a child psychologist so we could try to learn how to deal with his behaviors, but it is extremely hard to diagnose a two-year-old.
The major problems started when he was four. Our son was enrolled in a boy's school that has about 800 students K-12. His teachers kept calling, telling us about all of the issues they were having with him in school. He was constantly hurting other kids, not listening, making inappropriate comments, etc., so we went to see another child psychologist. The doctor felt that it was a behavioral issue, and by being strict with our son and challenging him intellectually, he would straighten out. So for the next two years, we tried to go on with our daily lives. It wasn't easy but we somehow managed, and during that time he became the older brother to another two brothers, making him the oldest of four. And then, in March of three years ago, our whole world was turned around.
It started on Purim. He was aggressive, running away, and very explosive. My neighbor found him one day after school in the school parking lot down the street in the middle of carpool time. We just didn't know what to do anymore. We saw that these were not normal behaviors. We spoke to a relative of mine who works for a pediatric "health system" in our city. He referred us to a psychiatrist and we had an appointment the next day. We met with her and we talked about our son and his issues, and at first she thought it was ADHD. I was so happy. Finally, we knew, or at least we thought that we knew, what was wrong with our son. She prescribed the usual Ritalin, and for the first day, it was great. I felt like I had my son back. He told me he never felt that relaxed in his whole life. Well, that changed quickly over the next few days when he threatened to jump out of my bedroom window, then climbed out the living room window and tried to run away. We went back to the psychiatrist and she saw right away what it really was. My beautiful, brilliant, funny, compassionate son was literally climbing her bookcases, screaming like a wild animal. That was the day we got the diagnosis of Bipolar Disorder.
I couldn't eat, sleep, or get through the day without cryingA chemical imbalance in the brain that causes severe mood swings, combinations of mania with depression, thoughts of grandiosity, bipolar disorder is different in children than adults. When an adult with bipolar becomes manic, they will generally do things like go on shopping sprees and get themselves into loads of debt, or write hundreds of pages of manuscript that make no sense whatsoever. But in pediatric bipolar, the mania is different. The child tends to become extremely aggressive, violent, have feelings of being the king of the world.
For the next week or so, I was walking around like a zombie. I couldn't eat, sleep, or get through much of the day without crying. We were completely overrun. The whole family felt very guilty. We thought that our son could control his rages. He looked like he was turning them on and off. In reality, he couldn't. When I was pregnant with him, I would pray that he should be healthy. When we do that, we usually mean physical health, not mental. I became very angry and frustrated and didn't know how to deal with my feelings. As time went on, I realized that there were better ways to deal with my frustration. I joined an online support group and got a counselor to help me sort out all of my feelings.
During the first months after his diagnosis, our son went through a myriad of medications. Some worked and some didn't. Many had some pretty bad side effects. It wasn't until the summer that we found something that worked, or at least we thought it did. During the first week of July, our son spiraled very quickly. We made the decision to hospitalize him. It was a complete nightmare and it took an entire day of phone calls to two different hospitals and our insurance company before we were able to admit him.
My husband saw that I was falling apart over this, and forbade me to go with him to admit our son. I was completely racked with guilt, although the decision to admit him was for the best. Watching my son that day was like watching a wild animal. It was also very difficult because as much as we tried to explain it, he didn't understand what to expect when he finally got to the unit. My son was convinced he would be lying around all day watching television, like he has seen from visiting others in the hospital or a nursing home. When we first got to the unit, which is locked because it is a psych unit, we had our bags checked to make sure that we weren't bringing in any "contraband." He was not allowed to bring any glass with him, such as picture frames, and no sharp objects or belts.
He was aggressive, running away, and very explosive When we went to visit him the next day, he seemed to have figured it out. I remember sitting in the hallway crying and watching two staff members carry him into a "timeout room." It was just too much for any one person to handle. I just kept thinking, G‑d, please get us through this. Please help our son get healthy again. It took a lot of praying, and faith that everything would turn out okay (whatever that meant). He stayed inpatient for a week, but had to be readmitted four days later due to extremely violent behavior. This included trying to swing on the blade of a running ceiling fan, choking me and beating me. All this, seemingly, because I said "no" to his request.
We got through the rest of the summer as best we could. It was very stressful on our other sons, especially our second son who was five–years-old at the time. He had unfortunately become a human punching bag to his big brother. When we discussed with them what was going on with our oldest, our five-year-old was jumping for joy. That is how unsafe he felt in our home. It's a terrible feeling to know that you just can't keep your children safe, especially from a sibling. When school started that fall, our son went back to school. We explained to the rabbi and his teacher what was going on with him. Things seemed to be going well considering he spent two weeks in a psych unit, didn't go to any summer camp, and had to adjust to going back to school (which can be a trauma in itself).
But then we found out that there was an incident during the second or third week of school. Pretty serious in their minds, overreaction in ours. We had a meeting, which included the psychiatrist. The bottom line was that the school didn't want to deal with our son. The principal decided our son should be home for two days, and they wanted a dose of meds to be added and given during the school day. The school wanted guarantees we couldn't give. In the end, we didn't add any meds because we knew that wasn't the answer. We just shifted the doses to appease the school. All it did was make our son fall asleep in class. I was very angry. We pay a lot of tuition money for my children to learn, not to take naps.
It was actually a very nerve-racking time. My husband and I were afraid that the school was setting the stage for kicking our son out. We even went so far as to look at a Jewish special needs school in our community. The problem was that it didn't sound like they would want to accept him. Our son is very bright, and most of the kids in their school are not able to learn on their grade level. The school was afraid that our son would get bored and act out, which would not be a good situation. But after much discussion and prayer, especially prayer, things in school calmed down.
Unfortunately, his behaviors at home did not. When our son first went into the hospital last summer, my husband asked me what my biggest fear was. I told him it was that our son would try to kill himself. Maybe not today, tomorrow, or next month, but maybe five or ten years down the road. I really didn't think that it would happen when he was seven–years-old.
He told me that he was killing himself because he didn't want to live anymoreIt was Yom Kippur night. Of course, it was about five minutes after everybody left for services. I wasn't really paying attention to what my sons were doing. I mean, how much trouble could these boys make? They were all in the living room with me, getting into their pajamas, goofing around. I was feeding the baby, reading a book, ignoring my children. For whatever reason, I decided to look up. I saw my eldest son trying to strangle himself with his belt. At first it seemed like an impulse, but once I got it off him and we talked, I realized that this was something he really wanted to do. He told me that he was killing himself because he didn't want to live anymore. My heart almost stopped beating. How would a seven-year-old know about these things? He told me he always felt stupid, (this is a child who taught himself to play chess when he was four), that nobody loved him (we tell him that we love him everyday), that he has no friends (even after his incident in school someone invited him to sleep over for Shabbat). I saw from this conversation, through many tears of his and mine, that he really has a low self-esteem and is slightly delusional. We didn't put him into the hospital that night, although we should have. We knew that if we did, he would end up being there for all of Sukkot, and none of us wanted that.
For the next couple of weeks, we were walking on eggshells, trying to keep him somewhat sedated, until after Sukkot when he tried to strangle himself again. Then we put him back in the hospital. Sometimes I wonder if G‑d is playing a cruel trick on us. How could He do this? But, I realized, whether I like it or not, it is making us stronger. I have a friend whose daughter is autistic. She told me the worst thing people could say to you is the oft common saying, "G‑d only gives you what you can handle." It's not true. There are plenty of times we can't handle it. Times when we want to just walk away. But perhaps the reason G‑d gives us challenges like this is to make our belief and trust in Him that much stronger.
When we felt that we had hit rock bottom, when we couldn't possibly handle any more, we decided to finally be proactive with what we were dealing with, rather than solely reactive. It is at that point that we really started the process of getting help for ourselves. Through advocating for our son, and meeting other families, we saw that we weren't the only ones in our community dealing with these struggles. We decided to start our own support group. Our group really just started during the summer and we have a core group of about six or seven families. There are three main goals of the group: 1) providing basic support for the families 2) educating the community about mental illness to help take away some of the stigma, and 3) providing a social outlet for families. We meet about once a month, and hope to eventually open ourselves up to include any family in our community who has a child with a serious mental illness.
Until he stabilizes, we see that this is our lifeFor many years, we hoped that this problem would be solved. That it would just somehow go away. We have now accepted that taking care of our son is a daily struggle that could continue for the rest of his life. Our son's days, and our lives in general, are very unpredictable due to this horrific disease, but for now, this is what we have. We, including our other sons, have somewhat figured out what sets him off. Okay, we are generally walking on eggshells around him, but until he stabilizes, we see that this is our life. He is doing well in his school, which is a special school for emotionally disturbed children. His school is a level 5 school, meaning it is the most restrictive environment within the public school system. They work on a point system as a positive reinforcement. The school is a real ego stroker, if you know what I mean, and it has been really good for my son's self esteem. But it is also strict in what it does or does not allow. If you mess up, you are in the resource room, and if you get violent, you go to the isolation room. Most importantly, the school accepts him for who he is. And he attends a learning program once a week for special needs boys at one of our local yeshivot.
Connecting to others in similar situations also reinforced something we always knew in our minds but had to really feel in our hearts and souls. This challenge has shown us the importance and need for true faith and belief in our Creator. He is the one who is truly guiding us through our lives. There is no question that if He gave us our situation, He can also give us the means and strength to deal with it. And every day, we see more and more that there can be light at the end of what has been a very dark tunnel.
And with time, I can see the progress that we have all made. A few years back I would not have envisioned that I could be a source of strength and optimism to others. But I have been, and that has inspired me to believe that we will make it through this. And as hard as it can be to see at times, underneath the anger and illness is a beautiful child, a precious soul that we have been blessed to have as our son. There is no question that we have faced many challenges and, unfortunately, may have more to come. But we also believe that we will somehow have the strength to face them, and one day, overcome them as well.