Well, I'm here, as you heard is the parent of a 20 year old son who suffers with BPD.
I am here with his permission. And he has specifically asked me to share anything about his situation or his story that would be in any way helpful to anyone else. Because, as he put it, if there's anything that he can do to alleviate someone else's suffering, to prevent them from having to go to the depth that he has gone, then he's happy to do that. So I am here with his permission, which I appreciate tremendously.
You know, the scary thing about all of this is, this is actually a date for me and my husband to be here today. So, you know, this is our life now. And, you know, it's such a varied audience, you know, there's clinicians, there's consumers, there's, you know, social workers, there's a little bit of everybody, there's parents family members.
But if you're wondering who the parents are, in the, in the audience in the group, it's very easy to tell, we're the ones that look like we've been hidden, but been run over by a truck. So it's very easy. I can't possibly convey my appreciation for the work of the NEA BPD in 10 minutes, but you will see that the impact, you will see the impact of that organization, on our families trajectory over the past five years. As I explain our story, I also don't want to scare anyone. You know, with our story, I can tell you that our story has a happy ending so far. So we can all breathe.
I also want to apologize in advance to anyone who may be offended or a bit put off, if I use a little bit of dark humor, I would not be able to stand before you today without it.
So when I started learning about BPD, I often heard parents or other people share the sentiment, you know, and we've heard that today, if only we knew well, in our case with our son, we knew.
We knew that he was emotionally tremendously sensitive from from the get go, that was abundantly clear that his emotional sensitivity level was very different from the other kids on the playground, the other kids in the class, the other kids on the little league team, little things that meant nothing to someone else were devastating to him.
I think of an example of when he was about four. And somebody, a little kid was they were doing a pretend game with ice cream sandwiches. They were pretending to have ice cream sandwiches. And the kid says to him, I'm gonna make a pile of ice cream sandwiches and our child says Oh, me too, and they make their piles. So then the kid reaches over and he says, He says, I just ate all of your ice cream sandwiches.
Now remember, these are imaginary ice cream sandwiches. Nobody has any. Our son was devastated. devastated.
One of our other children might have reacted by saying you're an idiot like what? What is your problem? Okay, I'm gonna make myself 20 million more.
But that just go is a very small example of that emotional sensitivity. You know, in elementary school, he did exceptionally well, very intelligent, never had to do much work. Teachers loved him, he always responded to the teachers because they were consistent in their, you know, in their reactions with him and whatnot. You know, in in middle school things really, that was the point when things really started to unravel for him. He couldn't, he couldn't manage to take the bus home from school, because picture a middle school school bus at 230 in the afternoon, you know, 6/7 and eighth graders, you know, the decibel level, the chaos level there I just that, you know, couldn't happen.
So that's when we started to see that his he was being prevented from doing things by his emotions. We thought he might do better in a very small nurturing private school. So we started high school at a small nurturing private school. And on the very first day, he came home from school and he said, Nobody cares that I'm there.
On Christmas day of his freshman year, I saw that he had made cut marks on his leg, like a little like a punch. Have cutting marks on his legs. I had never seen anything like that before. I had no frame of reference for what could possibly be going on. So I spoke to his school counselor, I got myself a book on cutting, we actually took him to a psychologist at that point, who advised that we provide him with less of a safety net and that he, you know, he's able to experience the consequences of his own actions more. We noticed at that time, a marked increase in impulsivity.
And in relationship instabilities, he had no stop instincts, he would climb anything, climb trees, climb electrical towers, climb to the top of Best Buy, I would show up at school and I run into another mother and she would say, Oh, I saw that most recent video of your son, he is such a daredevil. Really, would you say, you know, and you know, some crazy video that was on social media of him, you know, climbing somewhere or something.
So for the next couple of years, as he went through high school, he continued to excel academically. And he continued to have extremely volatile friendships, romantic entanglements. It was just he was a life of drama, and of crisis.
It was increasingly difficult for him because, you know, on the one hand, he's taking all these AP classes. He's the varsity of the he's the captain of the varsity cross country team, junior and senior years, he's got all this. And at the same time, he was experiencing emotions that he couldn't handle. He took make pain medication for conditioning had for the very first time.
And that became a problem. He started down a path of hiding the fact that he was seeking relief from his internal turmoil in any way he could.
Thankfully, he never had consistent access to any one substance. But his entire life became an absolutely impossible tightrope walk between this high achieving student, youth group member, etc. And this overwhelming turmoil. He was cutting, there was sexual recklessness, prescription drugs, alcohol, what else throwing up, choking himself, his self harm escalated, you know, I'd be driving him to school in the morning, and I'd look over and realize that he had a red ring around his neck and that he'd been trying to choke himself. You know, just all kinds of things.
It was, you know, each day what we were just what is going to happen to that, are we going to school, we're not going to school everyone. We together went to a psychiatrist who helped him to try to deal with the underlying, you know, anxieties that he experienced.
But regardless of you know, the general treatment that self harm impulsive behavior or sexual recklessness continued.
His first hospitalization occurred. his senior year, I found him in a bloody bathtub. He was released after 24 hours, he had a second hospitalization shortly thereafter, he was in a hospital for three or four days and then he was released. self harm and impulsivity continued escalated, and it became increasingly varied, creative, and lethal. Throughout his senior year of high school.
We went to another physician who initially thought he was bipolar. Ask him if you ever felt empty, no, never, never felt he felt empty. And about my life. His behaviors continued, there was no stopping the creative self harm. Until one day, the physician asked him in an appointment, and thankfully, the physician was very open to involving me in the treatment because I could give insight, you know, things that he couldn't see.
And he asked our son, have you ever felt lonely? Being in a meeting? That was the magic question. You talking about language, our son couldn't relate to the idea of feeling empty. But boy, could he relate to the idea of feeling lonely, and that was the magic.
That was the magic right there that led to the BPD diagnosis. You know, his response was every minute of every day, crushing loneliness. So of course, having a diagnosis doesn't really provide treatment, however, necessarily, but we still had an accurate diagnosis.
We waited a month or so for an appointment with a DBT therapist who was able to confirm the diagnosis, which was great. But they didn't have time. They didn't have room in their schedule to treat him.
So we were just seeking treatment. We waited for a couple of months to get a spot in the IEP and it was just a miscommunication for how that would all happen.
He arrived all excited the first day. You know, he graduated from high school on a Friday.
And he showed up at DBT at the i o p on Monday. And they said, Oh, no, you're just here to be on the waitlist for the DBT program. He was like, What? So it was just a, it was a miscommunication. He was eventually referred to a DBT therapist with whom he went through one cycle of a DBT class.
It's interesting, he felt that it wasn't a great fit with that particular individual. He said, he felt treated like a curiosity. And he actually said to me, said, Mom, what I need is skills, I don't need to be fascinating to someone, I don't need to be interesting to somebody, I need to know what to do. So that you know, that was very telling.
At that time, I remember the psychologist telling us that our son had a prefrontal cortex like Swiss cheese. Okay. Good to know, during this time, I'm, I was still buying oxy clean, to clean all the blood out of everything buy in bulk, I was you know, I would show up at the counter in target and I would have a cart full of bandages oxy clean. You know, I was, they must have thought it was a murder, I don't know, it was trying to you know. So, you know, these, these moments come to mind that stand out, he was standing at the pharmacy counter with all my bandages and my oxy clean and whatnot.
And, you know, it's it's sort of an odd experience. Perhaps, unlike other family traumas, throughout this experience, there weren't other moms who were helping with rides for my other kids, picking kids up at practice, provide meals, to the clinicians that are here, please understand how alone these family members can be feeling.
I mean, they're suffering so acutely. You know, the, we want the best for our loved ones, we may not be able to provide it without your help, we need your help. At one point, I, you know, went to a therapist myself and tried to get some help and, and trying so hard to help, she was so well intentioned. And so she when she told me in our in our second session, she said, I just want you to understand that your son will never be able to accomplish what he wants to do in his life.
Thankfully, I didn't believe her.
I went to an NEA BPD Family Connections class, and that changed the course of our family's experience.
We learned specific skills that enabled us to help our son, our selves, and our other children. Throughout this whole process, we had lost our confidence in our ability to have a rich and loving relationship with our son. The relationship mindfulness skills that we learned in the class enabled us to walk and work together with him through the terror and the fear and the uncertainty that he and our family experienced over the next several months.
Learning about validation skills change the tone of our conversations within our home. These were the skills that we had to learn and practice and as we did our relationship with our son improved dramatically, his other symptoms and continued, but it was truly a sea change because we were facing everything together as a family unit.
Because his symptoms continued unabated with self motivate self motivate mutilation, impulsivity and drug use. He ended up deferring college for his freshman year, culminating in an episode with him slicing himself open and in such a way that he hoped to effectively bleed out again he himself expressed ambivalence about that. He said, If I die, I die if I don't, I don't.
So he did end up in inpatient in acute care for about six weeks. We had to keep coming back to the skills that we had learned in the family connections class regarding radical acceptance of our lives and his so that we could calmly support him and his siblings and his siblings.
You know, you face such odd circumstances. Okay, so my, you know,
My son is in the hospital in an acute care unit that you know, he's only designed people to be there for a short period of time, and he's there for six weeks.
Meanwhile, I'm back at home and I've got a like, how do you get rid of a bloody mattress? I don't know. You don't take it to the dump? Like you can't take a blood soaked mattress to the dump ?
Can you know you can't because they will think you're hiding a body somewhere. Can you put it out by the curb for bulk pickup? No, no. Can I answer that one right away can't do that either. So you know these things that you your your patients families are going through that you just Can't like they're just absurd. They're absolutely absurd.
And they're not the kind of things you talk to your neighbors about, hey, listen, I've got this really bloody mattress. It looks off in the carpet, the carpet, you know, the carpet guys are gonna come in to replace the carpet in his room while he's in the hospital, but it is blood soaked.
And I'm just wondering, like, should I have them come take that out? Will that scare them? Or do we have to, you know, stay up all night, take out the carpet himself, and, you know, do something with it so that, you know that nobody thinks it was a crime. So all these odd things happen. In any event, a turning point, another turning point, I will say you don't you don't hear much about medication with BPD.
But with our son, there's so many things going on. At the same time, that finding the right medication truly was a turning point for him. And our psychiatrist who continue to help us while he was in the hospital, you know, would consult with a psychiatrist at the hospital would talk to us help facilitate communication really went out of his way he called me up, he said, you know, a study just came out in the American Journal of Psychiatry, you know, this you, I really I want to talk to the psychiatrist on staff to talk about trying this with your son, and everybody was on board.
And we tried it, and it made a difference.
Our son describes his experience with medication as follows. He said that he is like a boat on an ocean and the ocean, you know, these, these huge waves of emotion are coming and they're, they're just, you know, he's this little boat, and it's just, it's just at the mercy of these waves. And he said, with the medication, it doesn't take away for him. In his unique circumstance, it does not take away the waves, but it puts ballast in the boat. So that he is like this, instead of like that. And for him that helped him then enough to be able to benefit from therapy.
Then our next challenge was, where do you go from the acute care unit, not a single residential facility in the entire United States would accept him. Not manager, not Sheppard, Pratt, not Austin Riggs, it's particularly hard because he he's a male, he's a boy, there's more treatment out there for women, we could not find a single residential facility that would accept him, even though he was doing much, much better.
I was told to just leave him in the acute care unit for another probably three months or so until a spot opened up in the state hospital. And that that would probably be where he would be living, then from that point forward. And I was told specifically by the staff members at the hospital to stop looking for options for him. You know that I'm not a professional, let the let the discharge planners do their jobs, which they do very well. And I appreciate it tremendously. But I was told, please stop that. And so I talked to our doctor and he said, Don't stop, don't stop. In fact, I'll help you.
We were eventually able to find a program that would accept him. It was not an ideal program. However they would, it was something, you know, any port in a storm. So and while he was there, he was able to connect with a very gifted psychologist that could relate to him, they could accept him where he was, and help him to move forward.
He was there for a couple of months, he came home and continue to work with that same psychologist twice a week. It took about another six months for him to recover sufficiently to be enabled to enable him to enroll for his freshman year at Northeastern. He just completed his freshman year of college at Northeastern up in Boston.
Other parents prepare their kids for college by going to bed bath and beyond and whatnot.
We prepared him for college by teaching him how to check himself into the emergency room. You know, he still had a very difficult year was not the typical freshman experience, you know, how many other freshmen are going to rushing back to their rooms to have a Skype session with their psychologist twice a week, you know, that, you know, he goes to class at you know, 10 o'clock in the morning, he's a little bit late, because he just was checked out of the ER a little bit late.
So he was a little bit late to class, you know, I mean, these are not typical experiences, but they're his experience. And he got through it, and he got through it successfully. And he is doing what he wants to do. And he's using his emotional storms.
You know, in his work at school, he's in the School of Arts, Media and design and he is a film studies major.
And so he's using his experiences and he's telling stories with them, and I'm so excited for him and you know, life.
Life is not easy, but it is pretty exciting. And I feel like I just need to give one more plug for any appd Before I go, I feel like I should say this.
This talk was brought to you by the NEA BPD. Because truly attending that class made the difference that made the difference. So I thank you all.
