I’m standing in a long line at King Soopers. I’m so hungry I am feeling light headed and I am doing everything I can to stay in this line because my instinct is to abandon this cart and instead drive through Starbucks or order something from my husband who has pretty much been my caretaker in all things food for the last several years. I have gotten out of the habit of being the kind of mom I started out as. The kind of mom who shopped and cooked and baked and was truly on top of all the things. THAT kind of mom. I am desperately trying to get back to being THAT kind of mom. I do know why it’s so difficult and I’m not ashamed to name the reasons, but I don’t have time for that anymore. And it won’t help me with the fact that I’m hungry most of the time and I do need some help if I’m to be the kind of mom my kids need me to be.
It’s the getting the help that is the most difficult part. People don’t come out of the woodwork to run your errands or make meals or help you clean your house unless they are in it with you. Even friends need to be paid.
When I was in my thirties and my children were young I became very ill. I looked fine to most people, but I didn’t feel fine at all. I battled insomnia hard for about seven years. I was exhausted and severely fatigued. I ran on adrenaline most of the time. At the height of my illness I once went 23 days with only a few hours of rest each night, induced by Ambien. The pain was almost unbearable. My kids saved my life. Being here for them kept me going.
While chasing down my symptoms I ended up with several diagnoses. Fibromyalgia, Epstein Barr virus, and Chronic Fatigue Syndrome are the main ones that have stuck with me. Now I have learned that I am under the umbrella of conditions called dysautonomia. It took me a while, but I had enough doctors ask me about my level of stress and push prescriptions at me to understand that I just needed to biohack my body so that’s what I did. At some point I realized that my body had stopped sweating altogether. I found this to be more alarming than the extreme sweating I had been doing throughout my heart palpitating fitful nights for the few years before. Not sweating didn’t feel right at all. So I went back to the hot yoga my mom introduced me to when I was in college. It took me a few months of just going into the hot room and laying on my yoga mat three times a week before I finally broke a sweat again. I never really discussed it with anyone, but I knew that it was something important. Our bodies are made to hold and release water. I’ve realized through my biohacking that my body doesn’t always do that very easily on its own. I wonder why.
I’m the same way with crying. I just don’t do it very often. It is something I should probably start tracking because it can’t be good for me. I’m certain it’s as important for my health as being well hydrated or sleeping. I wonder if the sweating and the crying are part of my same wiring? What I know is that the sweating was something new that happened when I was sick and was never an issue before. But I’ve never been a crier. I’ve always been stoic. Sort of unflappable. I’ve become curious about the meaning of this part of my human design.
Don’t get me wrong. I’m not a robot. It’s not that I never cry or that I don’t feel things deeply. I absolutely do. I cry uncontrollably sometimes. Just not very often. During my sickness I experienced a kind of crying breakthrough. I remember being at a museum with my kids and our friends. It was winter break and we had a good time with our friends. I had nothing particular on my mind as I was driving us home and then out of nowhere the tears just came. There was no reason I could think of, but it became clear that my body just couldn’t hold whatever it was in any longer and the water was coming out in buckets. As it turned out, I did release a bunch of emotions that I had stuffed deep down. My thoughts about feelings I had over the years that I didn’t even recall at all came spewing out of my mouth in what felt like projectile verbal vomit all over my now ex-husband. It felt like a kind of out of body experience for me and an unwitting assault on him.
I think back on the few times I have cried hard like this because I wonder how the tears sometimes feel like they rush in with such intensity and without control and then other times not at all. I have experienced a lot of pain. Anyone who really knows me can see this. But the things is that I don’t feel like crying. Why? Recently I began wondering if there is a specific therapy that would release me from this human design feature that just feels wrong. Surely, I have enough pain stored up for a few weeks of uninterrupted bawling. But nothing until about a month ago when suddently every day for a few weeks I had tears running out of the corners of my eyes all day long. It was strange and annoying. Enough so that that I thought about chasing down the symptom. But then it stopped as suddenly as it had started. Fascinating. I interpreted this symptom as my body telling me that I better get more water out even if I wouldn’t cry. I haven’t found cry therapy, so back to hot yoga I go. It’s so good to sweat.
Today I sat with one of my teenagers as they wailed at the world that has been so cruel to them, especially the last few years. I listened and I loved my beautiful child struggling and I wept beside them. My heart ached as I listened to them wail about how humanity is lost. How they wish the world was just different. Given all we’ve been through over the last few years, I wish the same thing. What we have experienced and witnessed over and over again can make you lose faith in humanity. At least some of the time. I’ve been there. For me, I really just try to remain focused on the more immediate human problem rather than all of humanity.
What I see right now is that our school system is lacking humanity. So I pray for all of humanity that the adult human beings who are in charge of our schools will bring their focus back to the young human beings we are supposed to be educating. That’s all it really takes. Focus on the kids instead of the adults. In the meantime, I’m going to do everything I can to change it because there are just so many kids getting hurt. I know because I’ve got three of those kids myself.
I have faith that we can change the world if we can just focus on humanity.
I don’t actually recall if anyone has said it to my face, but I know that some people think that it’s my own fault that I have so many problems. It’s impossible not to see that I have a lot of problems if you’re paying attention. I have three teenagers. And who doesn’t have a lot of problems? I’ve found that life comes with an endless supply. Some are more difficult than others and there are always solutions.
A good friend of mine recently explained to me that I have five karmic corrections. I don’t exactly understand that, but it does give me some relielf. My friend is able to see in me what I already know. My life is hard. Now I know that it’s in the stars. Karmic corrections. It’s a tangible reason that explains why my life is hard. Otherwise, it looks like a choice or it looks like it is my fault. And I always knew that it is not. Even if others don’t see it that way.
Sometimes I know that people assume that I make my life harder than it needs to be. I guess that is theoretically true and maybe even actually true, based on my own abilities and inabilities. I am not perfect. But what people are really thinking is, do I really have to fight so hard? Yes, I do. It’s my life and I don’t see giving up as a choice. I’m pretty sure now that my soul might just end up with a sixth karmic correction if I don’t fight when I know that I can. The truth is that not fighting is not something I would ever consider. It’s my life. They’re my kids. It’s my responsibility. They are my family. I am also intentional about always trying to do what I think is right. It is my foundation. And I was born this way. A fighter. I feel fortunate to be this way. And I am very aware that not everyone is able to fight the school system for their kids like I am. Not everyone can afford to. They can’t make the time. They don’t have the money. They don’t have the skills. They don’t know the law. Not everyone knows their rights. Someone has to do it. It’s the only way that change is made for others. It’s why I am a civil rights lawyer.
The truth is that my life looks like a mess because I’m open about it. I’ve never really been afraid to talk about it, but I am aware that sometimes it makes other people feel scared so until recently I have tried to keep it close. Only those closest to me know what is going on in my life. This is still true. I have a lot of people in my life who really don’t know anything about me. They see as much as they want to see. It’s just not always comfortable. I certainly haven’t often written or spoken about my experience until now, but I wish I had. Maybe I wouldn’t be so isolated. Maybe the trauma my family has endured wouldn’t have been so intense if we had more people who understood what we have going on and what we have been through. The truth is that is the reason I started writing and speaking. People need to know.
Another good friend says that now I’m living out loud. I guess that’s true, but it doesn’t feel loud to me. I just wasn’t born to be loud. I’ve always been quiet and observant. Stoic. And I have learned a lot. That’s what living a hard life does for you. I am grateful for this wisdom. My life is a master class I am here to share. Now I can’t seem to get my story out far enough or fast enough or wide enough. Or loud enough.
Because I am a well-educated, middle class white woman living in a good neighborhood, I live in a circle of people who can often afford private services, private therapists, private evalutators, private schools, private whatever their kids need. I’m not criticizing this. I can afford some of those things. I am fortunate. These things have become necessities that many people cannot afford. That’s why they suffer. I also live in a circle of people who were raised in a privileged environment themselves. They were fortunate in that way, but that has not been my experience. I know what it’s like in the public school system and so do my kids. Sometimes I imagine how nice that protective bubble must feel. I don’t have time for envy. I have to keep moving and fighting. Sometimes it feels like I’m treading water or running in circles. And I am known to take others’ hands along the way because I know they need the support. It is a lot and it is a choice, but I know that’s what I’m here for and I believe that we are all in this together. Privilege is irrelevant to me.
Here are the facts. The education and health care system data reports show that problems like my family is experiencing (i.e., trauma, illness, truancy, dropout) affects only those who come from challenging circumstances like poverty, homelessness, and addiction. I’m here to tell you that this is not true and that these reports give people a false sense of security. It makes people think that they are not susceptible to such unfathomable things. It makes people think that these things are only challenging for people who have always struggled with these things. People who are not white or middle class. People who are not privileged.
I’m here to tell you that no one is immune to these problems. I know that this is just part of life at the moment because I am living it. I know this because I haven’t met a parent with a school age kid in quite a while, particularly those in our public school system, who doesn’t have problems similar to mine. Perhaps I’m not telling you anything you don’t know, but I want to make sure you do so I’m saying it out loud. Our systems are failing us and it’s because they have not been built to serve our needs and because they are only focused on money and not on people. Our public systems are not focused on you or me. This is the same world we are all living in together.
That’s all the time I have today. I need to get back to it. Be safe and take good care of yourselves.
Public Testimony – Colorado Behavioral Task Force/Colorado Commission for the Deaf and Hard of Hearing and Deaf Blind
My name is Lisa Weiss. I am a children’s and disabilities attorney and an education policy specialist. I am also the mother of a deaf teenager. Max is the reason I was asked to speak at this Town Hall meeting today and I want to thank you for giving the deaf community an opportunity to be heard.
My deepest wish is for people to understand that deaf people are just like everyone else. They are just people. I have found the systems in Colorado to be difficult because of this one thing. I know that the state agencies responsible for serving deaf people don’t understand. This is not for lack of people’s good intentions. I know the people who work at these agencies care. It’s because of lack of exposure. It’s because assumptions are made about what deaf people need by people who are not deaf. Over the last nine years I have witnessed the exclusion of deaf people in the meetings where their fate is being determined for them. To me, that’s the biggest problem. We need deaf people at every level of leadership and there are almost none.
I have the privilege of living with a deaf person and being a part of a deaf community. I oftentimes work in predominantly deaf groups. I understand the barriers that exist when the communication is inaccessible. I understand that inaccessibility is at the core of all of the struggles for our community. It is a barrier to everything. People are wired for communication. It is a basic human need. It is the reason communication is a civil right. Without the ability to communicate there is no opportunity for meaningful understanding or connection. For a meeting of our minds. What I wish people would understand is that this does not only affect the deaf person, this affects the whole group.
What I also wish people could see is that for a person in an inaccessible community, this one thing often is the reason for their behavioral health care need. Without access people can easily become isolated and withdrawn. We become depressed and anxious. I want you to try to imagine what it feels like to be fearful and to feel excluded everywhere because you can’t understand what is going on so you can’t connect. It’s not that difficult to imagine that at some point you really only feel safe in your own home. That is Max’s experience and that is our family’s experience.
OUR SCHOOL SYSTEM IS NOT FOCUSED ON PEOPLE AND IT IS HARMING OUR KIDS
I want you to know that I was raised in our public school system. I am a supporter. I moved back here when my kids were young because Colorado boasted of being a leader in deaf education and I wanted my kids to attend the same schools I did. I wanted my kids to go to the schools where I felt safe. But this isn’t the same school system. Our school system is no longer focused on its mission. Kids. From my perspective, our childrens’ social emotional needs are ignored unless their behavior becomes disruptive. Then they are restrained, suspended, or just pushed out and forgotten. There is little regard for our children, for our teachers, or for families.
Please understand that my experience is not just limited to Max. I have three kids and I can tell you that life has been extremely challenging for my family. All three of my kids have had adverse childhood experiences in the public school system and have been unable to attend school or have their needs met. As a mom who has kids who are gifted and who also have disabilities, I can tell you that it has gotten to the point where it is nearly impossible to get kids like mine safely through our school system. That’s because our school system has lost focus on the whole point of education.
As for our deaf kids, I know they are being harmed. Their accessibility needs are being neglected because the systems of support haven’t ever been set up. The services they need are too difficult and expensive for school districts so they just don’t provide them. I have heard often enough that parents are not complaining. This is not true. I know that our deaf kids are being neglected because of systemic failure and Max has been traumatized as a result. Our family has endured a lot. Let me be clear. I do understand that the accessibility needs are not just being neglected in the school system, but this is where I have been living until now and it is what I can personally verify.
MENTAL HEALTH CENTER OF DENVER FOCUSES ON PEOPLE AND THEY HAVE COMMITTED RESOURCES TO ACCESS FOR DEAF PEOPLE
All that said, in terms of behavioral health care outside of the school system, I think I can fairly say that Max has been fortunate. Especially relative to what I know about Max’s deaf peers. When Max needed it, I was able to find a private therapist who focuses on deaf adolescents and could work with Max. I didn’t have to worry about Max having access, which I know can take time to get set up.
Now Max is fortunate to be recovering from PTSD and the effects of social isolation at school. Max is benefitting from the programming at the Mental Health Center of Denver. There Max is able to participate in groups and activities with other teens. That’s because MHCD has been compassionate and patient and generous. That’s because MHCD is focused on their mission. That’s because MHCD sees deaf people as people.
What MHCD is also learning is that not all deaf people are alike. I have found this to be a real problem, especially in Colorado’s agencies. People need to understand that the deaf community is diverse. Deaf people speak. Deaf people use hearing technology. Deaf people use American Sign Language. Deaf people use something called Cued Speech. Deaf people use written language. There are many ways to communicate. The accessibility need varies depending on the person, the circumstances, and the setting.
THERE MUST BE A FOCUSED EFFORT ON THE DEAF COMMUNITY OR THEY WILL CONTINUE TO BE HARMED
Our deaf community looks to be relatively small. We are easily overlooked without focusing on us. The services we need are oftentimes costly for organizations to provide and most people do not even understand what we need.
I want to encourage this task force to make this community a priority. Organizations in Colorado must be supported to understand how to meet accessibility needs. Colorado needs to build an overall system of support. It requires education and it requires dedicated funding. Accessibility must be factored into every organization’s budget. And the system needs to call on a diverse group of the people in this effort who understand the accessibility need. The deaf people themselves are the leaders we need.
I have not been paying much attention to the impeachment hearings. I know to some people that probably makes me seem like I am out of touch and maybe I am, but I know myself well enough by now to realize that I don’t need the impeachment hearings running through my head every day. Besides, my husband is deeply into it and he is a human being who is designed pretty much like a megaphone crossed with a tuning fork. That means that I am really not missing out on much and it still stresses me out. It also stresses him out, but he’s not as protective of himself as I have learned to be. I just hope it’s all over soon.
I don’t blame my husband for his curiosity. Back in the day I myself was devoted to following the OJ Simpson trial and I got caught up in the news scrum after the 2016 election for a few months, so I definitely understand the entertainment value. For the most part I have never really watched the news. It’s just not for me. I prefer to read my news. I just don’t have that kind of bandwidth.
But I do have a lot of respect for the whistleblower and for the civil servants who have been testifying this last week. I’ve heard the term whistleblower a lot lately, but I don’t know if there is much attention being given to who a whistleblower really is. The legal definition of a whistleblower is “an employee who brings wrongdoing by an employer or other employees to the attention of a government or law enforcement agency and who is commonly vested by statute with rights and remedies for retaliation.” This is what I found when I looked it up just now in the the Merriam-Webster.com Legal Dictionary. Merriam-Webster Inc., https://www.merriam-Webster.com/legal/whistleblower. Accessed 23 November 2019.
What I think is that a whistleblower is simply someone who is willing to shine a light on something that they know to be wrong. Someone who is willing to put what they know on the record. What I know is that it takes an enormous amount of courage. I’ve heard enough of the impeachment hearings on NPR while I’m driving around town to know that these courageous people are being portrayed as hateful. I just don’t see them that way at all. From my perspective, these people have been called to action from a place of love, out of duty and honor.
There is also one thing about these impeachment hearings that is a constant reminder for me. It is something that has come up for me over the years whenever Rudy Guiliani is in the news cycle. You see, I was one of Guiliani’s lawyers.
This really isn’t a big deal. I defended the City of New York under Guiliani’s administration for a hot minute almost twenty years ago. I was just a baby lawyer trying to figure out how to practice law. Truth be told, my 29 year old self didn’t even think very much about my boss and I never even met the person. But over the years whenever it has come up that I was a lawyer under Mayor Guiliani’s administration it has felt awkward. There is something about revealing this truth that makes me brace myself for the person’s reaction. Just a smidge. It’s because I never know what kind of an assumption a person might make about me based on this professional association. Especially now that everyone is learning so much about him.
Oy. Guiliani really is a hot mess.
I realize now having worked under other administrations that my connection to Guiliani has always felt surreal to me only because he has such a high public profile and I am just the opposite. It is in my nature to fly under the radar. What I know is that everyone is connected a lot more closely than any of us usually stops to realize. I am one degree of separation from Donald Trump. If you know me, that means that you have only two degrees of separation. This is the kind of stuff that blows my mind.
The degrees of separation between human beings has long been fascinating to me. Pretty much ever since I saw the movie Six Degrees of Separation when I was still in high school. The theory of six degrees of separation is that any person on the planet can be connected to any other person on the planet through a chain of acquaintances that has no more than five intermediaries.
What I’ve come to understand about this is pretty simple. Our connections to people, no matter how distant they may seem, do mean something. The closeness of my connection to Guiliani and now Trump is a reminder to me that what I do does affect other people. It does matter. No matter how much you think it doesn’t, it does. We are all connected and we are all responsible for one another.
I just learned through a website about an organization called Transparency International and that June 23rd is World Whistleblower Day. Who knew?
I’m proud to be among the people who are called whistleblowers.
I’m on a plane ride home. I was visiting a college with one my 17 year old twins.
Honestly, the whole college visit thing is a little bit foreign to me. I really can’t even remember doing it myself at the same age. Unless I count the time I drove up to Boulder from Denver with my girlfriend and our two guy friends we had asked to our high school winter dance. I’m pretty sure getting stranded at a fraternity house after a party and sleeping on the floor of their older brother’s room shouldn’t be counted as a college visit though. It wasn’t my proudest moment.
The point is that I don’t actually remember looking at colleges the way I am for my deaf child. When I was a senior I knew I was expected to go to college. I followed the path set out for me. Gap years weren’t a thing yet. I applied to a couple of in-state schools because that’s what my parents were willing to pay for. I was accepted to both schools and decided to go to the one where I slept on the sticky floor with my friends that one unfortunate night. I chose CU-Boulder because I knew I was going to have my friend as my college roommate. It was a good choice.
From my perspective, it doesn’t really seem like all that much has changed in the college choice process since 1988. The thing that has changed is amount of pressure on kids. And on parents. I don’t remember my public school friends applying to a dozen colleges like my friends‘ kids do now. Maybe I was just oblivious. It wouldn’t be the first time.
To me it just seems to be an exorbitant amount of stress that has resulted in parents getting too involved. I understand that parents are just worried about whether their kids will be able to manage without them. I get that. I talk to those parents all the time. We all know this. My god, there are celebrity parents facing jail time because of their messed up college choice process
I’m not that kind of parent. I just am not interested in living that kind of hyped up, stressed out, competitive life. That’s part of the reason I moved back to Colorado from New York. I didn’t want anything to do with that pressure cooker. I didn’t want to raise my kids that way. I have never and would never encourage my kids to apply to a dozen colleges. I guess it’s because my own college choice process worked out just fine for me.
I think I am generally the same kind of parent to my three kids that my parents were to me and my brother. I assume that my parents trusted our capabilities or at least trusted that we would ask for their help when we needed it. They supported us when we really screwed up.
Choosing a school for my deaf child should actually be pretty simple. There are only a few schools to visit because there are only a few that they are interested in. They are the schools that have been recruiting my child for the last few years. You see, my child is deaf and wants to go to a deaf school. Or at least a deaf program. My child doesn’t have to go to a deaf school, but wants to. Not for the reasons that people might think. My child is able to get along pretty well in any school with effective access. Theoretically, my child could go to any college and get the communication access they need. But my child wants to be among their deaf tribe. I think maybe my child needs it. People may never be able to understand what it’s really like to be a parent to a child who is born deaf. I often find myself wishing that we were all deaf. The truth is that we are all becoming deaf.
The other day, the New York Times published an essay by a writer that we know. It was a cause for celebration in our world. Through her words she gave voice to so many of us who struggle with belonging in the deaf community. Like my child, the author is deaf with parents who are not.
One thing she wrote about was the fear some parents feel thinking that Deaf people will take their deaf children away from them. I do understand this fear. I have sensed it from some of the parents I meet and I have even heard it uttered by some of my friends. But I don’t share their fear and I never have. Here’s why. We are bonded. We are as close as any mother and child can be. Just like I am with my other children. That’s because we can communicate completely and naturally and without the need for hearing or learning any new languages. I can talk to my child at the same time I talk to anyone else and without changing my words or interpreting them into another language. That’s because we use Cued Speech.
Despite the bad rap that “hearing” parents get from some people in the Deaf community, I am actually the opposite of these fearful parents. I want my child to go to deaf schools. I love the pride deaf schools instill in their students. It’s important. I do my best to instill this sense of pride in our family. Deaf schools would have always been my preference for my child, but it just isn’t as simple as that. The deaf schools don’t understand or normally provide access for deaf kids who use Cued Speech. They insist that everyone conform to using American Sign Language. It is not a language that has been easy for us to learn.
Now as we take a good hard look at these few deaf programs, I am worried that the communication accessibility issue that should not be a factor at any school might actually be as complicated at a deaf school. These schools are recruiting my deaf kid yet deaf kids like mine face the same problems at these schools that Deaf kids face everywhere else in our “hearing” world. Why should any deaf person be required to learn a whole new language before they can get an education at a deaf school? How does this make sense?
So I am happy to be visiting these schools, but it is not exactly the experience that most of my hearing privileged parent peers are having. I am visiting these schools to make sure that these deaf schools will provide my deaf kid with the kind of access they will need.
My child is not a signer. My child is a talker and a Cuer. My child’s native language is spoken English, just like mine. Of all the schools in our country, these deaf schools must be able to understand and accommodate and accept deaf Cuers because when it comes right down to it they are all in the same boat. My child is deaf just like anyone else who is deaf. And believe it or not, my child is not the only deaf kid in this situation.
Anniversaries are a funny thing. Truthfully, I hadn’t even thought about the date today until a dear old friend posted a comment on my Facebook. Adam and I practiced law together in New York City and he is the one who reminded me of today’s anniversary. He is the one who reminded me to think about my own story from that day. Thank you, Adam.
Truth be told, I have not often told even my closest friends or family about my experience with 9/11. Some people don’t even know that I lived in New York City at that time. You see, there were other people in my life who had stories that seemed so much more important or interesting than my own. So on 9/11 I disregarded my own feelings and quickly, without a moment of thought, stuffed them down deep. That’s what I do. That’s what I’ve always done. I know it’s not healthy. That’s why I write now.
It took me a decade to finally begin valuing my own 9/11 experience. And it required therapy. My therapist did not even realize I had been impacted by 9/11 because I had so much regard for my ex-husband’s story that I disregarded my feelings about the experience completely. I had “not being there” guilt. She called it survivor guilt.
My ex-husband’s story really was powerful and it is also only his story to share. And at the time there were people who thought the world wanted to know about it. I can still recall the voices of Katie Couric and Oprah on our answering machine at the other end of the line. They both called our home phone in the hours and days after the tower was hit. Maybe that’s one of the reasons it has taken me a long time to realize that my own experience also has value.
Fortunately for me, when the plane hit the World Trade Center tower I was still lazing in bed in my brownstone apartment in Brooklyn. That’s one reason why I thought my story had no value. I wasn’t even there. I wasn’t one of the people running away from a burning building, running through ash and smoke and chaos like my boyfriend, my friends, and my colleagues. And I wasn’t one of the people trapped underneath the World Trade Center, which is where I most likely would have been if I had gone into the office that morning as I had planned to do. That was where I was pretty much every morning when I went to work in Manhattan. The subway underneath the World Trade Center was where I started and ended my commute to work.
I had been on a plane myself on September 10th. I had taken a sabbatical from the stress of my job as a defense attorney for the City of New York. I had rented an apartment in Paris by myself and spent a few weeks traveling with friends and then came back to the states where my boyfriend and I vacationed with my parents in Hawaii. He went to work that morning, but I did not have immediate work to get back to so I was taking my time getting up. All of my active cases had been reassigned before I left and I had planned to go back into my office that morning to talk to my department chief. So when the tower was hit, I was still blissfully unaware.
I was alerted to the tower being hit by my landlord, Alba, a sweet and kind hearted woman from Colombia who lived downstairs. She owned the brownstone with her late husband, Stanley. My boyfriend and I rented the apartment, which was the top two floors. A small closet in the hallway of our apartment provided the only access to the roof. I was finally roused by Alba pounding on my door so she could get up to the roof. She told me the tower had been hit and she wanted to see it with her own eyes. I did not.
Everything about that day is a little blurry and always has been. I turned on the tv as soon as Alba told me what had happened. What I could see immediately was that the tower was leaning and it looked like it was going to break apart and fall over. I was worried about my boyfriend who worked in the World Financial Center across the street from the tower. He called me twice shortly after and these quick phone calls reassured me that he was okay even though the tower had not come down yet. People had not started evacuating other buildings at that point. But I had heard his voice and in my mind that meant that he was alive. As much as that made no sense at all that’s how I felt and what I thought as I moved through that day. He was okay. Everything would be okay.
I remember talking to a few people on the phone. My boyfriend’s sister. My mother. Instinctively somehow I knew that I was never going back to my office. There was no reason for me to think this so it must have been from somewhere inside. I remember wandering around Brooklyn on foot. I remember going to an office store to buy a fax machine because I was going to be looking for a job. I remember lugging that fax machine home. I didn’t have a car. All I know now is that I felt sure that day that my life was going to be different. I had no idea then how much.
I did talk to my boyfriend again toward the end of the day, so I had been right that he was alive. He was trying to figure out how to get home. We talked about people he could contact. Places he could stay that night. I didn’t know then if he was coming home that night. Ultimately, he walked home and walked through the door looking as he always did after work, which surprised me. The only difference was that he had walked, that he was not wearing a tie, and that he had quite a story to share. And I just felt numb.
What I remember now about the days following was that it felt as if someone close to me had died, but there was no process for the death. No funeral. No sitting shivah. No mourning or grieving process that I could recognize. I knew a lot of people who were there that day. Of course, there were a lot of people who died, but I didn’t know any of them. All of my friends and colleagues survived.
Those first few days there were people calling trying to get in touch with my boyfriend. Important people wanted him to tell his story. He didn’t want to discuss it with anyone. He just wanted it all to go away. He began having nightmares. Neither of us was going in to work because our offices had been damaged so badly. And we really weren’t talking about it much at all. I think we probably just wanted everything to go back to normal. What was normal?
I wonder now if the death that I was feeling was a piece of me that died during that time. I couldn’t talk about my own feelings because I didn’t feel like I deserved to. My only story was his story. And he didn’t even want to talk about it with me. I wonder now if the death that I was feeling was also a part of us that died, him and myself together.
There were real, tangible ways that my life changed after 9/11. At least, in my mind they were direct results of my 9/11 experience. Most importantly, the conception of our twins and later, my youngest child. I have no doubt that they would not have been conceived but for 9/11. For this, I am eternally grateful for that day.
Hope has been on my mind a lot over the last week as I think about what it must feel like to be my 16 year old. Despite everything that has happened to her over the last few years at school, she has practiced forgiveness and patience and has continued to hold out hope that people will do what they promise and what is right. I have always been patient and I realize that I tend to be a hopeful person, too. I think I’ve always been that way and maybe that has rubbed off or maybe we were both just born that way. I don’t really know how that works. What I do know is that we are both people who can be patient and who look for hope. The way I see it, these are qualities that weigh heavily in our favor.
People are very curious about my daughter, but they don’t always seem interested in the ways she needs them to be. Right now they’re more interested in her gender identity. It’s the question I am most often asked. Even when I am in the middle of a conversation about what is most affecting her. Her deafness. I get it. Not everyone has a transgender person in the family and it must seem like the biggest deal in the world to a lot of people. I guess it is a big deal, but not to me. Not right now. She is almost 17 years old. I’ve known that she didn’t fit quite right into the gender role she was assigned at birth since she was as young as six years old and I found her in one of my formal dresses adoring herself in a full length mirror in my bathroom. I have a whole photo shoot of that moment. I need to find those images on my computer. She knew she was and she still is beautiful. Her labels are irrelevant to me. She is the same exact person she has always been. I’m not here to tell her who to be and I never would. People praise me for this attitude and tell me how lucky she is to have me as her mother. I appreciate that and I know that is true because I know that not everyone accepts their children for who they are. I just feel like her mother. Lucky to have her.
Don’t get me wrong. I’m glad that there are people who are curious who support her and accept her, but what I truly wish is that people would take an interest in the fact that she is deaf and she is being discriminated against. It’s a big deal. It makes her really expensive to educate because she needs an interpreter at school. She is entitled to it under the law, but we have to fight for it ourselves. The discrimination against her as a deaf person permeates every single crevice of our lives. She has been traumatized. It hurts every person in our family. It’s hard when hope falls out from under you and you feel hopeless. It wipes you out and makes you feel depressed. That’s just what hopelessness does. That’s why hope is so important to me.
She wrote something the other day about what it feels like to be discriminated against. I read it. Yesterday she asked me if I know what it feels like. I don’t. But I know what it feels like to be the mother of someone who has been discriminated against. It is hurting me deeply. I can only imagine what it feels like to be her. Now at a time when she is most vulnerable, she has been betrayed again by the same people who have been hurting her all along. She just hoped they would fix the problem. It stands to reason since that’s their job. So far hope and patience haven’t worked out in this situation at all. Not for either of us. She has been an educational refugee all year because she doesn’t have an interpreter. It is a struggle to find any benefit for her at all in our schools. And she’s certainly not alone. The people who have hurt her were supposed to teach her. It turns out she is doing the teaching. She speaks up for herself. She doesn’t hesitate to speak publicly about how she has been mistreated because she is deaf. She wants to call the police. She doesn’t understand how discrimination, especially against a child, isn’t a criminal offense. Why doesn’t the law work that way? She filed her own complaint about how she’s been discriminated against by the school system because it’s just plain wrong.
I was texting with her the other day and she said that she was glad that it was happening to her instead of someone else. I actually know that’s not exactly true. I’m certain that there are other Deaf kids who are suffering in the same way, but I didn’t say that to her. She feels like the only one right now. Instead I asked her why she was glad it was her. She said that it has to happen to someone for things to change and that she knows not everyone can handle it. She said she knows she can because she has become so used to it. It felt like an arrow was shot straight into my heart. I am raising a leader and only a few of us can see that. She knows it. That’s the only thing that really matters.
I am amazed at her resiliency and so thankful for her. I wish to god she didn’t have to be this strong. I thank god that she is. She hugged me and thanked me yesterday for always being her rock. I am thankful that I am strong and that she knows that, too. But it is the kids who are going to have to lead us out of this mess because the adults are just failing. We live in an adult world where we have to navigate through lawyers. I am in awe of her simplistic power.
And there it is again. There is always more hope when I look for it. I love that about hope.
I took this photo of myself voicelessly whistling. I cannot actually whistle. My family can attest to this fact. The letter below is what we wrote today to Carl Clark, the current CEO of Menntal Health Center of Denver as a follow up to a previous letter that I will also put here in my personal website where I get to write whatever I want.
Our children have not received good care at all at Mental Health Center of Denver. I want my friends to know. I want the whole world to know. That’s an understatement, but you know I’m trying to tone it down. That’s the directive I’ve gotten used to while working inside the public education system. It’s difficult for me to figure out exactly what tone I’m allowed to my experience now is that LinkedIn is now a more effective way to get the attention of business owners. In the mental health business this seems to be the only way. Engaging willingly and advocating vigorously for your healthcare gets you tossed out or retaliated against or neglected, so this is what I wrote. Have a 1m3s PEACE full weekend ✌🏼✌🏼
Dear MHCD CEO Carl Clark MD ,
I can’t believe we have to keep writing you publicly, but it is clear to us that what our family has uncovered about your mental health business practice is true. Your staff that has been responsible for caring for our child did not know how to request prior authorization for different levels of care outside of Mental Health Center of Denver until we advocated for it. Now at least these few people do.
What is also clear is that your staff does not respect or understand the mental health issues for which their patients are seeking treatment. We do not believe this is limited to Deaf and hard of hearing patients. This may be an MHCD policy and practice issue, but regardless it is a human services issue and a human rights issue. It’s wrong.
We hope to be able to work through your internal complaint process and obtain records more easily than obtaining the mental health services we still need. That was an impossibly long wait and a battle that we wouldn’t wish on any human being, especially a child! Our only regret is that we actually encouraged our children to give your mental health business another try. Lesson learned. Thankfully, not too late.
Answer this one question, please. What does “not really suicidal”mean? Is that a professional term?
Respectfully, Lisa A. Weiss, J.D. and Jason Rudofsky
This is a poem written a few years ago by our child when they were feeling tired of struggling. Our child was 16 at that time. They were asked to speak up about their experience in the behavioral healthcare system by the Colorado Commission for the Deaf, Hard of Hearing, and DeafBlind at a Town Hall meeting you requested. Now 19 they are too exhausted from fighting for themself and too sick to work or go to school. Our children are having to claw their way through the same old arbitrary and oftentimes capricious red tape in the Colorado systems that bar their access to all areas of a productive and happy life.
Our education, Colorado Access healthcare, and vocational rehabilitation systems are wearing down children and killing their life force. Our children are told by their schools, workforce counselors, and social workers that they are adults who must be able to take care of themselves at 18. They are told to be patient because our systems can’t serve them the way they are supposed to. They are told that is just the way it is here in Colorado. They are told it’s tough luck.
Do you think that five years of patience for adult issues is enough time for a child to suffer? We think it’s torture.
What is Early and Periodic Screening, Diagnostic and Treatment (EPSDT) for if not for the medically necessary healthcare for children? Nobody else seems to understand it.
When will children with disabilities in Colorado stop being neglected and abused by our public agencies whenever they step foot outside of their family homes? That’s the reality of life in our state.
These are things that we really want to know and questions you need to be able to respond to, especially before anymore average families like ours decide to move into our state. We can’t all afford to retain counsel and send our children out of state where they can be safe and secure while you work things out.
That’s the truth.
Lisa A. Weiss, J.D. and Jason Rudofsky Angry and Exhausted Colorado Parents who want some real answers from the Governor of the State of Colorado
This Rocky Mountain PBS video highlights two of our children who have so far survived unrelenting discrimination and retaliation against themselves by our Colorado human services agencies. I have a question for you. Do you really think that disabled children should be required to hire lawyers to sue their school district or access their rights to vocational rehabilitation or healthcare? Because that is the reality of their situation and any other child like them in our state right now. I wish that was not the standard advice you and your government officials are giving to parents of children with disabilities, but I do know that it actually is. That’s wrong.
These children shared their suicide stories last year. It’s been a really tough year since their story aired. They have spent this last year of their childhood fighting through the awful red tape of the Colorado Department of Labor and Employment, which was supposed to be assisting them with their vocational rehabilitation, and Colorado Access, which is supposed to be providing them with the healthcare they require to recover from the trauma they have endured in public schools. Instead, these systems have hassled them and dropped them out, just like our public schools.
It makes me feel ashamed to be a Colorado citizen and it makes me feel sick for all of our children. I hope that our State of Colorado officials will start to do their jobs with some compassion and operate our Colorado systems with some ethics and humanity because they are hurting children. I knew that already as a consulting expert for your Colorado Department of Education, but it is far worse than I understood. I don’t believe that disabled children should all have to hire legal counsel to be able to go to school or work. I don’t think that parents should have to quit working to personally educate, rehabilitate, and advocate for their children themselves. Do you?
I hope you will watch their stories. You are responsible for them as much as I am. I hope we can get them the support they are entitled to receive right now. They need all of it and much more. These systems are crushing their young spirits.
This little girl in the middle was born sensitive and strong and confident. She grew up in a good solid home with a family who loved her and cared for her well. She attended Denver Public Schools.
This little girl was known for being sweet, quiet and shy, but also curious and adventurous and tough, preferring to hang with the boys playing what they were playing. She was called a “tomboy”. She loved to read and write, roller skate, play tennis, soccer, and swim.
This little girl was known to be a gifted learner and an accelerated student and when she was in high school she became bored with school, preferring to focus on athletics and jobs where she felt confident, was actively engaged, and learned from her experiences. She was a dependable worker and a talented athlete. She had dreams of becoming a tennis star, a journalist, and a civil rights lawyer. She also struggled with a sleep disorder, gastrointestinal issues, and some sensitivities.
She left home at 18 to pursue an undergraduate degree in journalism from University of Colorado Boulder. She became insecure about her writing abilities and study abilities and switched her major to match her subject matter interests. She focused on studying history and eventually determined to also become a school teacher. She focused on tennis while working at Boulder Country Club throughout college and quietly still aspired to attend law school in order to work in civil rights, which she eventually did. She was a natural born peace maker.
She studied to become a paralegal first and earned a certificate at Denver Paralegal Institute. This gave her the confidence she needed to go to law school. She graduated from New York Law School in 1999 and shocked even herself when she passed the New York bar exam with high scores. She had never felt confident as a traditional student and still doesn’t. She went on to hold positions at prestigious places. She worked at the New York City Law Department where she argued in the court of Sonia Sotomayor, she worked at the the New York County District Attorney’s Office, and the United States Attorney’s Office for the Southern District of New York. She found that she enjoyed the law, but she wasn’t built to fight so she became a Mediator. She served as a policy specialist and senior consultant for the Colorado Department of Education.
She realized as an adult that she is neurodivergent, what it means to be gifted, that she can still play like a child, and that she is already a teacher and a writer.
Why am I sharing? Because research says that 70% of girls feel different about their futures after hearing from women role models. Thanks to Inspiring Girls International and Women’s Forum for the Economy & Society for asking us to inspire the next generation of girls by sharing our stories.
P.S. #thatlittleboy on the right is my brother Danny Weiss . #thatlittleboy on the left is my cousin David Booth . Weren’t we all adorable in 1973? ✌🏼💌
Below was a letter that I helped my husband write on April 4, 2020 when he was managing Zaidy’s, his family run restaurant. We were running around like chickens with our heads cut off delivering Passover seder meals very far and wide during the COVID pandemic. We had beautiful packages prepared by Top Shelf Baskets and amazing food prepared by our Top Chef friend and friends and family pitching in. Our goal was to bring both comfort and celebration to so many different people who were well outside of their comfort zone, including ourselves. It was incredibly stressful. Too stressful, to be perfectly honest, but we were proud that the family’s restaurant was able to spread some goodwill (and I was finally able to make truly good use of my great grandmother’s china plates.) Please don’t tell my mom I donated them for the cause. She’ll kill me.
I was really glad to be a part of this event and really proud of us all. That’s the truth.
“On behalf of the Zaidy’s family, I hope that you and those you love are doing well. We wish you dayenu. I think that the writer Melody Beattie explained dayenu so well when she wrote: “Gratitude unlocks the fullness of life. It turns what we have into enough, and more.” I like that a lot. It is my deepest wish that the food we have prepared for you will comfort you and fill you up with joy.
We at Zaidy’s feel fortunate to still be able to do what we have been doing for 35 years. Feeding our community is why we are here. Zaidy’s has been rooted in our family recipes and creations and in tradition. We have been blessed to be there for life’s important events. We know a lot of people have grown up with our food. Our food is love and that is our purpose. We intend to remain a center point for the community.
We know that this is a unique time for all of us and, of course, Zaidy’s is no exception. We feel fortunate that our Zaidy’s family continues to grow. During the last few weeks we have welcomed in many new friends. We couldn’t do what we are doing now without opening our arms to one another. Our Zaidy’s family is diverse. We are chefs and bakers, artists, actors, and lawyers, community organizers, teachers, and fellow small business owners. What we all have in common is that we are a bunch of mensches. Everyone has pitched in to help so that we are able to bring Zaidy’s to your home this year. We have poured all of our energy and love into making this Passover special. We are throwing all the goodies in and the kitchen sink. We hope you love it!
The circumstances that my little family have been in the last few years have been challenging, to say the least. At times I feel we have been misunderstood, disregarded, overlooked, attacked. I withdrew into a kind of small protective shell. That’s how I feel most comfortable because it’s scary out there right now.
I’m a truth teller. For me that means that when I speak or write I spit it straight out. Sometimes people describe that as being direct or blunt. I’ve found that people react to my truth in different ways. Sometimes people love it. They think I’m hilarious or inspiring or refreshing. And sometimes people just can’t tolerate it. I guess they think I’m rude or shocking or embarrassing. For whatever the reason, people don’t always appreciate me. What are you gonna do, right?
Sometimes I feel bad because I know that the way I am wired can be polarizing. I’ve experienced a lot of this last year. Life has been really hard. There hasn’t been a whole lot of joy. There has been a tremendous amount of pain. That means my truths are hard and they can expose a lot of difficult feelings. They are called hard truths because they are hard. It’s hard for me to express them and it’s hard for people to receive them. What I know, having gone through hard times before, is that my inner circle can become really small during these times. Not everyone can handle the hard things I’m dealing with. It just is what it is. I am sorry for the family and friends who have fallen away from my inner circle right now. My family and I do need support and I am grateful for those on whom we can depend.
One of the products of my truth telling personality is that when people ask me how I’m doing I have a hard time not just blurting out everything that’s on my mind. I’ve found that the best way for me to answer honestly and still within the social norms that people expect is to simply tell them that I’m okay. I’m okay has been my standard answer out in the world for the last year or so. I am okay. We are okay. Everything is okay.
This last year all three of my kids have been primarily unschooled. I’ve come to love this term unschooled. I’m not sure how my kids actually feel about it. They grieve not being able to go to school with their friends. My cousin’s partner introduced me to the term unschooling when she used it to describe her own teenage son. Despite anyone’s assumptions or judgments, my kids being unschooled is because I was left with no choice. They have been unable to attend school. All have been related to their health. I’ve met dozens and dozens of parents with kids who are being homeschooled for similar reasons. Our school system is unable to serve these kids. Despite working in the school system all these years, this is not something that I truly understood until now. It is something that I’ve now spent a lot of time coming to terms with firsthand.
I have had to stand up for my kids and for myself in our public school system. This has meant countless hours in exhausting meetings, nearly constant emails and phone calls, and complaints and lawsuits. I’ve had to handle a lot of health issues with my kids who are all working on getting back on track. I am also dealing with my own health issues, which have been triggered after being under control for the last 7 years. Now my health issues are back and I have to figure out how to take good care of myself all over again. Anxiety and depression are something that I am now understanding firsthand. It’s really hard.
So that’s where I’ve been. The details aren’t really that important to share here and I am happy to be moving into a new year of life. 48 was so hard, my friends. So hard.
We spent last weekend with my cousins. My brother doesn’t have kids, so they don’t have any first cousins on my side . . my cousins’ kids are their cousins. Trying to explain second cousins and once and twice removed? Huh? They’re just cousins. Can we end it at that? I’m confused. Seriously.
Photo I made of the kids and their Aikin cousins at the ice cream counter in Saratoga, Wyoming💌
I talked with a dear friend in New York recently who is going through a painful divorce. Just like I did when my children were young. She was there for me when I went through it. She is a good listener and a great support. She is a good friend. She is smart and wise.
She knows my divorce story and now I am the good friend as she is going through it herself. She will get through it. She is fierce in her love for her kids and in doing what she thinks is right for them. We are alike in that way. But I know how difficult it can still be on the kids. The choices we are faced with are unfair and unreasonable. The kids have no say in what is happening to their family and their life. Kids are so vulnerable. They really deserve to just be kids. Divorce puts a burden on them that is just unfair. It is what it is.
Like me, my friend has twins. That’s something else that binds us closely. At times, I have served as a kind of twins mentor to her. Hers, though, are still just little ones. They’re going into kindergarten this year. They’re five. Mine are now seventeen.
Incredibly, my friend’s divorce case actually went to trial because they cannot agree on money, basically. But it’s really about the kids. When you’re talking about taking responsibility for kids, you may end up talking about money, but it is always about the kids. Why can’t people just keep the kids in focus? I don’t understand. And I do understand. It’s maddening.
Put all your love into them. All of it. These kids are all that really matters. That’s the truth.
Most people who get involved with me know that my life is really like a roller coaster. I’ve always liked roller coasters. I’m not completely sure why. The truth is they actually scare the hell out of me. I’m one of those people who says yes immediately and then gets on and screams the whole time. I think some people think that’s crazy, but I really do like the feeling. It’s a rare bit of excitement and a great release.
A few months ago one of my kids told me that they felt like life is a roller coaster, too. I was momentarily stunned. I knew exactly what that feeling was like and I know it can be so scary sometimes. It seems like it’s either roller coaster or stuck.