For me, hell always began the moment Noah stepped off the school bus. We had moved him from public school to Summit, a private school specializing in bright children with social delay, where there were only eight children (and three teachers) in a classroom. At the time, I thought maybe the fact that he had a long bus ride home on the school’s minibus, which pulled up right outside our home every morning and afternoon, set him off. He would literally rage and rage from the time he walked through the door until he fell asleep at night; sometimes he would fall asleep midrage. My younger daughter, Rosie, coped with the madness by escaping to her room to play with her dolls. It wasn’t as easy for me: I handled each day the best I could—planning quiet activities for Noah like card games or playing with Play-Doh, trying to reward good behavior and continually tweaking his medication with his doctor to try to take the edge off his irritability.
If something unpredictable or frustrating happened during playtime—if he couldn’t form a particular shape with his Play-Doh or if I won a round of cards (usually by accident)—he would scream and cry and run back and forth through the hallways of our apartment. I would try to reassure him by quickly reshaping the dough or offering to play again, but he would not be calmed. He’d work himself into hysterics and would just repeat the wrongdoing over and over again: “I lost! I lost! I lost! I don’t want to play again! I will lose again! I will lose again! I always lose! Why did you make me play that stupid game? WHY DID YOU MAKE ME PLAY IT, MOMMY?”
If Rosie should happen in on this episode, he would scream, “MIND YOUR OWN BUSINESS, ROSIE! Stay away from me! Get away! Mommy, make her get away from me!” Poor Rosie would either just stand there, dumbstruck, or she would start to cry.
When Noah would finally stop running through the house, I would try to hold each of his shoulders in one of my hands, trying to reach him and quiet his out-of-control body and voice. Sometimes, upon feeling my touch, he would throw himself down, screaming, “You pushed me! You hurt me!” I would then run around the apartment, closing all the windows. I was terrified someone was going to call the police.
Stressful? Maddening? Unfair? It was all of those things, but when my husband and I considered hospitalizing Noah, I couldn’t do it. The idea terrified me: I couldn’t imagine a place that would be good enough for my boy.
And, despite all the white-knuckle days, I did not want to be separated from my son. He was only six. So, unproductive as it was, we just kept on doing what we were doing and bearing it. I was perpetually exhausted. When my husband, Michael, came home from work, I could barely speak. He would walk into our bedroom, and I would be sitting in the dark watching television. The kids would be asleep, and I’d be catatonic.
At about the same time, I started to uncontrollably shake during Noah’s tantrums. When I told our therapist, Dr. Evans, about this, she concluded that the prolonged stress was affecting my nervous system. She suggested I go on antianxiety medication, and I did. The shaking soon stopped.
Then one day she called to check on me, and she could hear Noah raging in the background. She said she thought that, although he had been diagnosed earlier as bipolar, his tantrums sounded autistic. She suggested we have him rediagnosed.
Four weeks later, Noah was admitted to a pediatric psychiatric ward at Stony Brook University Hospital, in Stony Brook, New York, two hours away from our home. He spent a total of six weeks on the ward, where they took him off all of his medications. I stayed in Stony Brook during this time while my husband and daughter remained in Brooklyn, so Rosie could go to school and Michael could work. The diagnosis he was given by the Stony Brook team was pervasive developmental delay (PDD), which meant he had delays across the board—fine and gross motor, social, emotional, and learning. Yet, his tests also confirmed that Noah was an extremely bright child.
We brought him home full of hope—now we could get down to the business of helping him get better. Or so we thought. Even with a revised diagnosis, new medication, and a mother’s helper, having Noah at home was mind-blowingly tough. It took everything I had left to get through each day.
The drama was taking its toll on my husband and daughter. Noah was destroying Rosie’s self-esteem and sense of well-being. A day did not go by in which, despite our best efforts to restrain him, he did not get up in her face and berate her. Noah was obsessive-compulsive about lining up his toys in rows. If Rosie wandered into his room, picked up a Pokémon character, and put it back in the “wrong” place, he went ballistic, screaming, “You idiot! You idiot! Don’t you know that is not where it goes!! MOM, GET HER OUT OF HERE! GET OUT ROSIE! G-E-T O-U-T!!!!!!” I could see her eyes flicker with remorse and fear. Her sense of herself was eroding before my eyes, and it broke my heart. And yet, I had a sick child, and that broke my heart even more.
Then came a Saturday in December of 2003, when Noah was still six—the day that changed our lives forever. It was unusual for us to have a Saturday appointment with Dr. Evans, but we did—because Noah was having a very tough weekend. She asked us to come in as a family. Just minutes after the appointment got under way, Noah started to explode. Dr. Evans peered over her bright red glasses and said she wanted to talk to my husband and me “in private.” The expression on her face was stone-cold serious. She said, “We have been working together for a year now, and we are nowhere close to where we need to be. It is time to discuss another option. I am afraid if Noah stays in the household, the damage to Rosie will be irreparable. The two of you look like you are falling apart at the seams. Believe me when I say that being this out of control is not good for Noah.”
I had to know what this “other option” was—immediately—so I could get started doing it. Noah had tried every medicine in the book. I had installed a sensory integration gym in my house, tried herbal remedies, as well as short-term diagnostic hospitalization for him. I even brushed Noah with a special plastic brush the occupational therapist had given me, every night, to help organize his nervous system and make him less sensitive to touch and hopefully less irritable. What, I wanted to know, was this “other option”? I felt like I was in search of the Holy Grail, only moments away from finally touching it.
“Residential placement,” Dr. Evans said. “In other words, a therapeutic school and living environment where trained specialists can address his needs on a deeper, more intensive level. This will allow you and your family some time to heal and regroup as well, without Noah in the house.”
I was stunned. Send my baby, my firstborn child, somewhere to live other than with me? I still couldn’t stomach the idea. I felt like a failure as a mother: I couldn’t make him better.
And yet, at that point, I also realized that his problems were bigger than me, and so I faced the fact that we needed expert help—not from a hospital, but from a school and living situation with a highly trained staff who were always there to instruct Noah as to how to communicate appropriately with others, without the distraction of having to do laundry or cook dinner or care for a younger sibling.
My husband and I were adamant about not sending him to a school we could not drive to, so we chose the Andrus Children’s Center in Yonkers, New York, which is forty-five minutes from our home.
On a sunny January day, my husband, Noah, and I visited the school, toured the beautiful grounds, and saw the boys’ cottage. When the head of admissions extended her hand for Noah to shake and he punched it, I thought we were doomed. She told Noah in no uncertain terms, “That behavior is not allowed here. Do you need to take a walk with your mother and calm down, and then come back to speak with me?”
“Yes, that’s a good idea,” I replied. Noah just frowned ferociously. He knew this was a boarding school, and he did not like the idea of it one bit. After walking the grounds for a few minutes, we found ourselves under the shade of an apple tree. “Okay, here’s the deal,” I said. “You can go in there and be yourself and speak with her, and when we leave, pick out a new toy dinosaur at the toy store—or you can continue to act inappropriately and sit in your room until bedtime once we get home.” As it was only eleven in the morning, he chose to go in and speak with the head of admissions.
During their chat, he got frustrated and angry at times, but did manage to share that he liked drawing (he is a talented artist) and playing with Pokémon characters. He revealed that he had an enormous Pokémon collection, and she told him that she knew some of the names of various Pokémon, like Pikachu and Ash. She would say a name, and he would recite the attacks that the character had committed in battle; they conversed like this for a while, Noah enthusiastically educating her. Overall, we were impressed with the ways in which the people at Andrus acted toward Noah: kind and encouraging, but firm. Thankfully, he was accepted. I hugged him when we found out and told him that he was not alone, that there were other children at Andrus just like him who needed help, and that the people who worked there wanted to help him.
At Andrus, he lives in a cottage with sixteen other boys. They are basically smart, delightful kids who no one can live with for various reasons. To look upon these children, you would just see sweet kids. Then something happens, and they’re not just sweet kids anymore. Noah receives reinforcement for his behavior twenty-four hours a day, seven days a week. At Summit, he could not incorporate what he learned at school into his behavior at home. He experienced himself as “two Noahs”: a good Noah at school and an out-of-control Noah at home. It was this “splitting” that convinced the board of education to pay for Noah’s stay at Andrus—the cost runs in the neighborhood of one hundred thousand dollars per year.
When Noah becomes explosive, his teachers, the staff in the cottage, and his social worker, Jon Kleinman, work closely with him to help him soothe himself. What has become clear during the last eighteen months is that Noah does have some very serious communication (language processing) issues. However, my husband, as it turns out, is very good at understanding and communicating with Noah. I never would have known this if Noah did not go to Andrus: When Noah lived at home, my husband was never home. He just couldn’t take it.
Noah comes home every other weekend and spends long holiday breaks with us, too. If his behavior is out of control, he gets a warning from us. If, after the third warning, he has not pulled it together, we take him back to Andrus. They are always available. And because, more than anything, Noah wants to live at home, the stakes are very high for him.
Noah likes Andrus. He has friends and he fits in. When he sees another child out of control, he says, “I used to be like that, and I don’t want to be like that anymore.” Seeing other children act out of control is a real learning tool for him. Once he said, “Mom, if there were others kids in our house that were my own age, I would hold it together.” The group dynamic, not wanting to lose credibility with his peers, serves as a constant incentive for him to hold it together. Noah is one of the highest-functioning kids is his cottage.
I went through a period of real mourning when Noah went to Andrus. Then I realized there was calm in my house again, and I hugged my husband and I hugged my daughter and, over time, we reconnected with one another. Noah is learning how to be a member of our family instead of the main focus of our family. Once we saw the progress he was making, we knew we had made the right decision. Most children stay at Andrus for two years. Noah has been there a year and a half, and I hardly recognize him.
His main goal is to manage his emotions. My husband and I see Jon Kleinman every other week, and, lately, Noah has been coming to our sessions. He can now take responsibility for the ways in which he used to act at home. He is learning how to change. His psychiatrist says he was simply born with a very rigid, inflexible temperament. She has not changed his meds. My family has a normal life during the week, and on the weekends we give Noah his lab work, so to speak—his hands-on practice of functioning within his family.
Rosie is thriving. She can have friends over at our home now, which she never could before, for fear of Noah getting out of control. She has her issues with growing up this way, of course, and sees a therapist. And she has some residual anger toward how Noah treated her in the past, which we are trying to get her to work through in therapy. Now that she is older, she can better express herself verbally and better understand what her brother’s limitations are.
As Noah enters puberty, we will keep a close eye on him. We hope he comes home to live with us soon but do not want to push him too hard. When his teachers, the cottage staff, his social worker, and my husband, daughter, and I all think he is ready, he will move back and attend Andrus as a day student. Our family and his teachers and therapists at Andrus are a team. I see the light at the end of a very dark, very long tunnel. Noah is going to be well.
This essay originally appeared as “The Team Approach” by Dawn Mazzeo from THE ELEPHANT IN THE PLAYROOM edited by Denise Brodey. Copyright Dawn Mazzeo, 2007, Used by arrangement with Hudson Street Press, a member of Penguin Group (USA) Inc.