Jeanette Breznau's Story

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JB: My name is Jeanette Breaznau; I’m 56 years old. Today is April 16, 19 – I’m sorry – 2007. We’re in the middle of Kalamazoo, downtown in a beautiful park, and my relationship to Ben, who I’m going to talk about, and tell his story, is, he’s my oldest son. I have three sons and Ben is the oldest.

JK: My name is Jennifer Kaup. I’m 41 and today’s date is the 16th of April, 2007. I’m in Kalamazoo, Michigan, and my relationship to Jeanette is I’m a friend of hers and I work with her son.

PRB: I’m Patricia Ressler-Billion; I’m 58 years old. Today is April 16, 2007, and we are in Bronson Park, Kalamazoo, Mich., and I work in the agency, Residential Opportunities Inc., where Jeanette’s son is served.

Jeanette, you have been working really closely with your son and all the folks who serve Ben, and you have a pretty big story to tell, so maybe you could start with who Ben is, and who you are in relationship to him.

JB: Okay, thanks. Well, it’s hard to tell Ben’s story. Since Ben doesn’t talk, we don’t have his own comment. Everything I say is my own interpretation of him: ideas my mind shapes from his actions. I so wish that I could hear his thoughts.

Ben, our first child, was born on Mother’s Day, a balmy Sunday in May 1988. I was 37 years old at the time, and he was my first baby – the first baby I brought to term. His dad and I birthed Ben in a cozy, comfortable birthing center in Michigan. We had a fantastic experience. We brought Ben home that very same day, after the physician affirmed our own feeling, that everything was just perfect.

Our lives changed traumatically, though, four and a half months later, right at the same doctor’s office, immediately after Ben received his second set of immunizations, which was a DPT and oral polio. It was October 16, 1988, just before they stopped using the live vaccine, and before they started withdrawing the mercury. Before giving Ben the vaccines, the nurse had gone down the checklist. Ben rated really well. I was nursing him exclusively and he came in at the top of the growth charts already. Developmentally, he was at or above the norm. But Ben started screaming on the exam table, directly after the shot. When the doctor did the neurological exam on Ben, already, we got a completely different picture. No matter what the doctor used, Ben wouldn’t follow. His neurological signs, all of a sudden, were all off.

The doctor wrote a referral to a vision specialist. The ophthalmologist ordered an MRI with contrast. After his exam of Ben, his report said that the structure of Ben’s eyes was fine, but he was cortically blind, meaning that his brain wasn’t processing the messages from his eyes. The MRI came back within normal limits, but the scan showed Ben’s brain as a normal brain, and it showed us nothing.

From that immunization forward, Ben’s life has been so dramatically altered. He screamed for long periods most days. He rarely slept at night. His belly bloated out painfully, and his eyes bulged. Slowly, before our eyes, Ben’s life became tortured. His developmental process first slowed way down, then stopped completely. He stopped turning toward sounds. He lost muscle tone, and at 9 months, he weighed 22 pounds, but couldn’t hold up his own head. Crying and screaming were our constant companions now. Tickle games and peekaboo fell by the wayside.

Doctors ordered lots of tests. The neurologist told me that when Ben was 8 months old, that Ben’s IQ was below 50, that he would never walk, never talk, and that it was all due to CMV (cytomegalovirus), which, this neurologist told me, I had probably acquired from our cat while I was pregnant, even though he didn’t even do a blood test to check, and I had passed it on to Ben through the placenta, which went through the blood/brain barrier and caused Ben’s mental disability. Over these long 19 years, I’ve been given many diagnoses for Ben, but none has been more painful or more incorrect than this one. All this was my fault and could have been prevented?

Well, after years of research and evaluations at as many medical centers as we could, we found out that cats can’t pass CMV to humans, and as Ben grew, he showed no signs of CMV disorder. He simply shed this ubiquitous virus when he was young, as many youngsters and oldsters do.

Faulty and misunderstood diagnoses have plagued our family. Schools, home aides, hospital workers, social workers: many have excluded us and given us misguided information. When Ben was young, with two younger brothers, these things were devastating. Ben got glasses and a wheelchair when he was two years old. Even with a rolling chair, it was still difficult for him to spend the day anywhere besides home, because he was so often crying inconsolably, or screaming. We turned his room into a foam bed, lining the floors and partway up the walls with foam slats covered with fabric, to let him roll away his misery.

His GI system was irritated all the time. We’ve tried every diet we could find: nothing worked. We tried so many medications, mostly to help him sleep, especially since I suffered extreme exhaustion, but nothing worked and early on, he showed unusual and adverse reactions to most of those meds.

Then, just before Ben turned 4, things got even worse. Instead of screaming, yelling and rolling, Ben changed over to yelling real loud, and to digging, biting and rubbing his skin off. Since he’s double-jointed and extremely strong, he can do damage to himself that no one can even imagine doing. He rubbed all his skin off his chin and neck and elbows. He gouged his torso and legs. Then, in his seventh year, he started on his shoulders. No one understood why, and no one could stop the injury, no matter what kind of wrap or appliance or cushioning we applied, he’s so flexible and strong, it just became one more thing Ben could hurt himself on. All day, all night, yelling real loud as he rubbed himself, making huge, deep wounds that seemed like they’d never heal.

Then, after weeks of this kind of injury, he’d suddenly stop, and for a few days, a few weeks, or once in a while for a few months, Ben would stop rubbing. He would just be Ben. He would just stop doing all these things and his body would heal in front of our eyes. His skin has always healed amazingly fast. But just when the sores would start to look good, out of nowhere, it would all start all over again. All day, all night. Yelling, blood, crazy eyes. Sometimes Ben looked at me like he had no idea who I was and no idea what was happening. We lived in a perpetual state of crisis.

When Ben was three, our second son was born. It was when younger brother Zack started walking, that Ben started hurting himself. Zack’s young life was very difficult. Zack hated being with Ben and I, but he also never wanted to leave us either. It was very traumatic for Zack. Then, when Zack was 2, we had Matt. Zack used to take his frustration out on Matt. One time, he pulled huge chunks of hair out of Matt’s head and Matt tried to cover it up by wearing a hat all the time. He lied for Zack about it. I think he sensed how much pain Zack was in.

I’ll never live in that house again. Every single day was a nightmare. We would hire people to help us and all of the sudden, they just wouldn’t show up or they’d walk out. It was very hard to be around Ben and our family. Life was really tough.

My husband and I separated when Ben was almost 14, and the boys and I moved to another county where there was perhaps more chance of finding a good place for Ben to go and live, and Ben did move out of our home that year, just after his father moved to China with his job. But within one and a half years, he was taken to the emergency room, and I was told to meet them there, and the facility where Ben lived just left us there. They said they couldn’t care for him anymore. When Ben was so deeply injured, they told me in the emergency room that they thought they would have to cut out his shoulder bones due to infection. This didn’t happen.

Given no other good options, we decided to use medications as a chemical restraint to get his wounds healed. The meds worked. It took two years, but Ben’s wounds did heal. Now we’re in a very slow process of decreasing the medications. It’s so slow, but he’s tolerating it very well so far.

I believe that one reason he’s making such amazing progress is that he’s happy where he’s living now. He’s in a specialized residential group home in Kalamazoo, run by ROI, and Ben just loves the people and the attention there, and they love him. He always wins over everybody’s heart. You can’t help but get drawn in to his big, beautiful smile, and his infectious laugh. His care is consistent there in his home, and so Ben thrives.

PRB: Jeanette, we’ll go back to Ben, but you said something that really struck me before this. You said, I woke up, and I saw that it was a beautiful day. How did you get there, Jeanette?

JB: Well, Ben taught me how to see what is happening in the present now, and how to accept that moment, because that’s the only way to be with Ben, and so as soon as the screaming would stop, then we could see the sunshine and I still, I wake up and that’s the first thing that happens for me. Is it quiet? Is everybody okay? Are we going to be all right now?

PRB: That’s your check-off list.

JB: Yeah.

PRB: Well good for you. This has been going on – how old is Ben?

JB: Ben is going to turn 19.

PRB: Yeah. You moved, you talked about your family. Tell us what it took for you. I mean, you were there the whole time, and you used words like “torture” and “ongoing yelling.” What did that do to you? What did that do for you?

JB: Well, it’s been extraordinarily difficult for me, especially since I’m his mom and right from the start, I was told in many different ways that it was my fault. That either I handled cats wrong or I took him to too many greenhouses – I had a business when Ben was born – interior plant maintenance.

My idea was that he would travel with me when I would visit all my accounts, and also when I would go to greenhouses to buy plants, and he went to Florida with me to make purchases and stuff, and then when all these things started showing up, these negative things where his development stopped, I started to read about fertilizers and environmental problems causing developmental delays, and again, there was more blame that I felt in my heart. You know, that taking him to these places was maybe part of the problem for him.

And then, trying to protect my two younger sons from the traumatic atmosphere that always even preceded Ben’s bad episodes. We couldn’t really call them episodes, because they’d last all year. There was a year when there was hardly a day that Ben wasn’t in restraints. At least some part of that day. And it went on and on, and no people – none of the professionals could tell us why or what to do, or what not to do.

PRB: And Ben always lived at home with you?

JB: Until he was 14, yeah.

PRB: That must’ve been a huge decision for you.

JB: That was the hardest thing I’ve ever done in my life. And when I thought about coming here to tell Ben’s story that was the hardest part to tell. No one ever does it like a mother, and especially with Ben, where even a sound – he could be not hurting himself and someone would make a sound, or a car would make a sound near him, and he’d go off and start hurting himself. Or he could eat something, just grab something from somewhere and just go off. You never knew. So I had to protect him from everything.

And yet, I had two other sons who needed me tremendously. Their dad was usually out of town when they were growing up, and even when he was in town, we had 20 acres and he was on the back of the 20 acres on his tractor, working. And so, I was the constant in these three boys’ lives.

PRB: It sounds as if you still are.

JB: Yeah, I’m still there. It’s great right now, because Ben has lots of people around him that really love him and really do their best to take care of him, and better than I can. I’m only one person. My other two sons have me, and we live every day like maybe the next minute, everything’s going to crash down on us.

PRB: Always looking over your shoulder.

JB: Yeah.

PRB: Yeah. How did you know to get Ben somewhere else? You had looked for services for so long.

JB: It was just through the grace of God. There was a woman who ran the agency that managed the funding for Ben. When he was at home, he had a Children’s Waiver. And the agency that managed that waiver, there was a young woman who was at the top of that organization that got to know Ben and our family really well. Because everyone got to know Ben, because he hurt himself the worst that anyone had ever seen in our state. So his story preceded him, and things just went from bad to worse to worst.

She one day called me and told me to meet her at a restaurant, that she had something to tell me. I met her at the restaurant, and she whispered in my ear that there were other counties that did better by people like Ben, and that I should move to Kalamazoo, and I did. Within a month, I was gone.

PRB: What a brave thing to do.

JB: It was the right time, and it was obviously the right thing. It was hard on his younger brothers, but there’s lots of things that are hard on kids these days, I think, that you can’t protect them from and you can’t change.

PRB: And there might have been a little relief that you hoped for as well?

JB: Yeah. Ben moved out of our house within the first month or two that we were in Kalamazoo.

PRB: Wow. You talked about his smile, that he really pleases people. Talk about that, will you?

JB: Oh, Jenny can tell you. He’s got a smile that would melt your heart.

JK: Yeah, he does. Ben, when you first meet him, just looks you right in the eye, and his whole face lights up. It’s wonderful. And you know, we’ve talked about the past with Ben, but over the last two and a half years that I’ve known Ben, there have been a lot of changes.

JB: Oh, my, tremendous.

JK: We’ve come a long way. We found out that different diet worked for him better, and so he’s not hurting himself. We found out that ibuprofen, of all medications, happens to be the one that works for him when he’s in pain.

JB: It’s amazing.

JK: So now, all these outrageous meds and that’s the one that really works.

JB: Jenny and I have – it’s like serendipity steps in and grabs us.

JK: Right.

JB: At the doctor’s office, we ask a question and we get an answer that we never would have gotten separate, or in a different situation.

JK: We’ve done really well together.

JB: Yeah.

JK: Come a long way.

JB: A long way.

JK: And now, we’re in the process of lowering medications and the doctors over the last two and a half years have told us “You can’t, you can’t. It changes the brain.”

JB: Right. “You’ll hurt Ben.”

JK: Right, but we’ve been doing it and he’s doing really good.

JB: He’s doing really good. In fact, just before we came in, Jenny and I were talking that Ben is giving me a really hard time every time I visit him lately. One thing that we think for sure, is that if he didn’t have very many thoughts, he wouldn’t be giving me a hard time.

JK: Nope. [laughter] He sure wouldn’t.

JB: But as the meds go down, he’s giving me more and more of a hard time. That’s his words! How could he not be angry? How could he not just want to strike out and hurt someone? Teens hurt their parents. That’s what they do as they emerge into this world that’s hard to integrate and hard to understand. He’s a teen. He’s a teen that’s been through torture, and that’s what he’s doing, and we’re going to give those feelings words. He’s going to get them.

JK: And he has! He’s talked. He says “kitty,” and “hi.” When we’ve talked about the meds, the first time we had gone down recently, about two months ago, he was having a hard time. He was looking very confused and we sat down with him and told him, “Ben, this is going to make you feel better in the long run, but right now, it’s making you feel funny. And the eye contact. Remember when we talked about the eye contact? It was like, “Okay, all right, I get it.”

JB: He took it in.

JK: And so we know we’re on the right course.

JB: Oh, yeah.

JK: Even the school.

JB: Even the school, even they’re on board now. What did they say at the last meeting?

JK: They said that Ben’s understanding –

JB: His receptive skills are so high.

JK: Yeah, it’s amazing.

JB: Every school tells me that Ben can’t understand anything. They don’t even want to do simple things, like toilet him.

JK: Right.

JB: But this is a total different look.

JK: And doctors are looking at him differently too, than they used to when we first started.

JB: Absolutely.

JK: They’re seeing what we’re seeing now.

JB: Yeah.

JK: Which is amazing.

JB: Yeah. Well Ben’s at a total different level now in this world than I, even as recently as when he was 11 and 14 years old. Most of the time, when I looked at him, I couldn’t really tell if he knew who I was. And I was the main character in his life.

JK: And he does. He does. He knows who mama is.

JB: Yeah, because he gives me a hard time!

JK: He does! He even, as he’s getting off the meds more, he’s more playful now. He would always tease me. I’d always come in and say, “Ben, give me a hug!” And he’d always come running over to me and pretend he was going to give me a hug, and then veer off the other way. [laughter] But now, he’s just like, “Ha, I got you, Jenny.” [laughter]

JB: He’s such a character. And just how he’s grown – he weighed 88 pounds when you got him, two and a half years ago, and now, he weighs about 120. He’s taller than you, isn’t he?

JK: Yeah!

JB: He’s almost as tall as me.

JK: Isn’t that crazy?

JB: Yeah. And I’m almost 5’7” and a half!

JK: And he was so little.

JB: Yeah, he was so thin.

JK: When we brought him back, she said, “Now, Ben, I want you to grow. Just like your brothers. And I know you’re gonna! No more of this!”

Both: And he sure has.

JK: Surprised us all! I’ve been kind of telling him lately, “Now, knock it off. Now you’re getting too big!”

JB: Because he sits on the floor and won’t get up sometimes, playing games.

JK: He’s come a long way. And we’ve got a long way to go. But we’re getting there.

JB: It actually looks now, like he has a life ahead of him, rather than … his whole life, until he went to the emergency room that day, was in restraints. Total body restraints. Medications. I mean, there was no quality at all to his life. He was in such pain. His injuries were – there are huge scars. You’ve seen them.

JK: Yeah.

JB: His shoulders, his chin, his neck, hands … he’s so scarred, but he’s gonna have a life now. We can see it!

JK: Yep.

JB: He smiles, he runs –

JK: He laughs.

JB: He laughs! [laughter] And when he is upset, you know, he gets the ibruprofen, or he gets in his bath.

JK: That’s amazing.

JB: He tells you, too. He lets you know. He comes up to us – he’ll come up to me and he’ll shrug his shoulder a little bit and look me right in the eye, and you know, you’d better do something. They do, and he responds, and he never hurts himself anymore like he did. Never. How long? Have you ever, since that one time, when you had to put restraints on him when I was still in China – was that the only time?

JK: There was one other time, and that was a med reaction. Because his skin, as far as the shrugging of the shoulders, that was it.

JB: He’s done with that.

JK: And I’ll tell you, one time, seeing that the way it was, changed me forever. I’ve never – I don’t know how – it must’ve been so hard for you. Because it just took one time for me.

JB: Seeing someone tear their skin with their own body over and over is something that no one can ever get used to, I think.

JK: No. And it felt like there was nothing you could do to stop it. But now, now we do.

JB: It has stopped.

JK: It has.

JB: He’s got a big Jacuzzi tub at the house now. [laughter] The tub is it for Ben when he’s miserable.

JK: Yep. He loves it. It works out. We would have never known that either, if you hadn’t been so involved. You’re just always there. You’re a phone call away, and you’re just always willing to be right there, and at that time when I first saw it, I wanted to take him to the Emergency Room. I’ve never experienced anything like that –

JB: Yeah.

JK: And you said, “Jenny, let’s go and put him in the bathtub,” and I thought, “Oh my gosh. Put him in the bathtub? I’ve tried everything. Put him in the bathtub?”

JB: That’s always what worked.

JK: You always come up with what’s worked.

JB: Yeah, we took him to the Emergency Room so many times, and all it did was he hurt himself more through the process of getting him there and being there and getting him back home again. And there was never any resolution offered.

JK: No.

PRB: Speaking of that, especially the early doctors, Jeanette, what would you say to them now? What would you do?

JB: Oh. That’s a really difficult thing, because, to me, the whole way that healthcare is now in the United States, we’re on the wrong track. People have gotten used to depending on their doctor to manage their health, and when they do get a problem, a sickness, they depend on their doctor and their pills the doctor gives them. I see it totally different now, especially seeing someone like Ben, who had the best – he went to Johns Hopkins University Hospital, Kennedy Krieger, the neurobehavioral unit, for three months, and he was worse off when he came home than when he went there. That is supposed to be the premiere place for a person with disabilities, especially Ben’s particular kind, and his condition was actually worsened. They did things that worsened his condition without even asking me.

So, the way I view what’s happening, as far as our health goes in the United States, is beyond what I could say to those doctors. You know, of course, immunizations: I’m not against immunizations. I’m not. I have researched tremendously on this, and we need immunizations, but they should only start after the age of 2, when the baby’s immune system is able to deal with them. And they should be broken apart, not given in groups. They should be given individually, and of course, the mercury should be taken out of them.

PRB: Getting back to Ben in the last year or so, what have you seen that makes you smile? Because you’re smiling now.

JB: Like I said, he’s almost as tall as me. He looks pretty normal. He walks! Ben started walking when he was 11!

PRB: Wow.

JB: It was his major accomplishment so far, and that’s his favorite thing to do. And that’s what he does! That’s what he does at his house. They have big open spaces. He walks, he paces, he runs, he jumps. All things that – my big dream, all his life, until he was 11, was to walk next to me, take a few steps holding my hand. And then we got there.

PRB: Wow.

JB: Then, now we’ve gotten here. And I know that we’ll continue to take steps, even though they’re just – you can’t see the way, and no one gives you any hope that, you know, there’s some magic bullet or something that can help him. We know that just by putting in our care every day, that Ben will be better now.

PRB: That must be very gratifying for you.

JB: Oh, it is.

PRB: And very exciting.

JB: It’s a different world. It’s hard for me to step out of the world of crisis and trauma, and looking over my shoulder, as you said, because really this feels still, even though it’s been two and a half years and more than a year since he’s been in restraints, it still feels like, you know, is it going to happen again to myself and his brothers? I think that we live in two worlds. We live in the world of going to see Ben – I do, I go to see Ben and I try to help his life and I talk to people that see Ben every single day, almost, and I try to help him. But also, I live in another world, where I deal with my other two sons and try to help them through their life, where Ben is really not present. Because to have Ben present in our life has always meant tremendous pain.

PRB: So with all that joy and excitement, there’s some really lasting sadness, isn’t there.

JB: Oh, there’s tremendous sadness. As I started to tell you, I was getting ready to tell Ben’s story, this huge ball of pain just came into my body when I thought about talking about letting Ben move out of the house, and I was reduced to moaning and crying and yelling. I just had to let that pain work its way from my body out my mouth. And it took about 45 minutes or an hour, and I feel I’m at a different place. I think I can see a world that has both Matt and Zack, my younger boys, and Ben in it now more than I ever could.

PRB: Now that you know Ben is well taken care of, how do you take care of you?

JB: Well that’s what I’m trying to find out. You know, Ben has taught me so much. Things don’t mean anything to Ben. Clothes, anything. I mean he likes good music, he likes food, but getting things means nothing to Ben and he’s taught me that, and so my world now is really one of trying to become aware of the moment and what’s important in the moment. And letting go of all the other stuff.

PRB: It’s a big lesson for everybody, huh?

JB: Yeah. Yeah, it is. It’s hard to come to, but that’s what I practice now.

PRB: What do you teach your other boys?

JB: I try to be an example to my other boys. I try not to be an authoritarian figure to them. I try, rather, to be an example to them. I feel that teenagers today are just so missing people to look up to. Who do they have to look up to? And many of them don’t even have parents to look up to. It’s, I think, one of the worst situations in the United States today, and so I try to help them. I try to let them believe in their good parts. All the things that they can do. Because, right now, they’re teenagers and all they see are things they can’t do. And so, every day, I try to say to each of them, one little thing I saw that they did good, or know they can do, or something that I’ve see that’s positive. And I just try to be an example.

PRB: You’re a great example to other mothers, too, Jeanette.

JB: Well, thanks.

PRB: And that’s an incredible struggle.

JB: It has been, yeah.

PRB: It’s clear you know that it’s not done. It’s lifelong.

JB: Yeah.

PRB: I’m glad that you have some supports for you to do this.

JB: Oh, yeah, I’m blessed. Right now, I live on two acres of woods with a pond right in the middle of Ann Arbor, right by the river. The deer come every day. The raccoons – all kinds of animals. And it’s peaceful.

PRB: Good.

JB: And that’s such a gift.

PRB: It’s a long time in coming, isn’t it?

JB: Yeah. My two sons and I live there, and we gain the peacefulness that it offers, and bring it in to our lives that have been so torn and traumatic, and we’re healing our wounds.

PRB: Wow. And you’re claiming it. A lot of people are seeing it go by, but you’re claiming it.

JB: Yeah … yeah.

PRB: Thank you, Jeanette.

JB: Thank you very much. It’s been a pleasure.