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. The kind of mom I was so good at before…..my paid job got in the way.
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 and family have their OWN lives and professionals need to make a living wage.
And then there’s the lawyers and consultants REQUIRED to help you fight for your child’s right to a Free Appropriate Public Education. Private schools are a privilege that a majority of US cannot afford. The whole thing is horrifying.
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, Insomnia, Sleep Apnea, 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.
1m3s = PEACE in the written code for my deaf language✌🏼
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.
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.
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. There were other people in my life who had stories that seemed so much more important or interesting than my own. My boyfriend turned husband now ex-husband was the 9/11 story that I was living and I am a person who reaches out to help rather than for help, so after 9/11 I quite naturally disregarded my own feelings and quickly, without a moment of thought, stuffed them down somewhere deep. That’s what I do. That’s what I’ve always done. I know it’s not healthy. That’s why I write.
The truth is it took me a decade to finally begin to think 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 his story that I disregarded my feelings about the experience completely. I had “not being there” guilt. My therapist called it survivor guilt.
His story really was powerful and it is also only his story to share. And at the time there were people in international media who thought the world wanted to know about his story. I can still recall hearing 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 Brooklyn in the hours and days after the 9/11 attack. Maybe that’s one of the reasons it has taken me a long time to process my own experience.
Fortunately for me, when the plane hit the World Trade Center tower I was still lazing in bed in our brownstone apartment in Brooklyn. That’s one reason why I thought my story was no story. I wasn’t actually even there at the scene. I wasn’t one of the people running away from a burning building, running through ash and smoke and chaos like he did, like my friends and my colleagues at the New York City Law Department did. 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 work 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 and 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 he 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 Georgia, 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, who is a sweet and kind hearted woman from Colombia who lived downstairs. She owned the brownstone with her late husband, Stanley. He 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 to me like it was going to break apart and fall over. I was worried because he 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 fine. It led me to the conclusion in my own mind that he was alive all day that day. 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. His sister. My mother. Instinctively somehow I knew that I was never going back to my law 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 somehow. I don’t remember how, but 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 him 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 if necessary. I didn’t know then if he was coming home that night. Ultimately, he walked home and walked right through the door looking as he always did after work. That surprised me. He didn’t look disheveled or dirty and he appeared calm. 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 those dead people. All of my friends and colleagues survived that day.
Those first few days after 9/11 there were people calling trying to get in touch with him. Important people wanted him to tell his story. He said 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. We weren’t talking about anything. 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 myself that died during that time. I couldn’t talk about my own feelings because I didn’t feel like my feelings mattered. 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 me 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 unexpected conception of our identical twins and later, our youngest child. I have no doubt that they would not have been here but for 9/11. For them, 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 over the last few years at school, they have practiced forgiveness and patience and have 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 child, but they don’t always seem interested in the ways we need them to be. Right now they’re more interested in my child’s 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 important in school. 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. My child is almost 17 years old. I’ve known that they didn’t fit quite right into the gender role that was assigned at birth since they were as young as six years old and I found them in one of my formal dresses adoring themself 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. They felt beautiful and they still are beautiful. The labels are irrelevant to me. They are the same exact person they have always been. I’m not here to tell them who to be and I never would. People praise me for this attitude and tell me how lucky they are to have me as a 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 their mother. I feel so lucky to have this child.
Don’t get me wrong. I’m glad that there are people who are curious who support them and accept them, but what I truly wish is that people would take an interest in the fact that they are Deaf and they are being discriminated against. It’s a big deal. It makes them really expensive to educate because they need an educational interpreter at school. They are entitled to it under the law, but we have to fight for it ourselves. The discrimination against my child as a Deaf person permeates every single crevice of our lives. We have 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.
They wrote something the other day about what it feels like to be discriminated against. I read it. Yesterday they 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 them. Now at a time when they are most vulnerable, they have been betrayed again by the same people who have been hurting them all along. We 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. My child has been an educational refugee all year because they don’t have an educational interpreter. It is a struggle to find any benefit for them at all in our schools. And I know that we are certainly not alone. The people who have hurt my child were supposed to teach them. It turns out the child is doing the teaching. They speak up for themself. My child doesn’t hesitate to speak publicly about how they have been mistreated because they are deaf. They want to call the police. My child cannot understand how discrimination, especially against a child, isn’t a criminal offense. Why doesn’t the law work that way? My child filed their own complaint about how they have been discriminated against by the school system because it’s just plain wrong. The complaint was ignored because they are a child.
I was texting with my child the other day and they said that they are glad that it was happening to them 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 them. They feel like the only one right now. Instead I asked them why they were glad it was them. They said that it has to happen to someone for things to change and that they know that not everyone can handle it. They said they knows they can because they have 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. My child knows it though. That’s the only thing that really matters.
I am amazed at their resiliency and so thankful for them. I wish to god they didn’t have to be this strong. I thank god that they are. They hugged me and thanked me yesterday for always being their rock. I am thankful that I am strong and that they know 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 my child’s simplistic power.
And there it is again. There is always more hope when I look for it. I love that about hope.
This is a writing in progress subject to additions, edits, and updates. I welcome comments.
School refusal is a term used to describe the signs of anxiety a school-aged child has and their refusal to attend school. Let’s cut to the chase. Children who refuse to go to school are unable to attend. They are protecting themselves from a hostile environment. The term school refusal is designed to direct the blame and the shame at the children and on the parents. It assumes ability. It is an ableist term, in Cole’s opinion and in my own. It is also called school avoidance or school phobia. School refusal can be seen in different types of situations, including a complete drop out of the traditional school system (i.e. homeschool, unschool, no school). To put it bluntly, kids are scared of school because it is not safe or good for their overall well-being. It’s the opposite. In the workforce world it would be akin to a hostile work environment and we would be able to file civil rights claims and sue our employer in court for this adverse action. But children don’t have the same rights as adults. That’s a problem.
This hostile school environment issue should be obvious to anyone who has school age children. If it’s not, please wake up now. And spend your lifetime fighting for children to be safe out in your world. And in my world.
The truth is that most children are highly mentally aware of the world that is all around them. Many are sick or in the process of becoming sick. Others may not be sick, but they are not well because their fundamental rights are being violated across the board. And then they are blamed for not being able to hang in there OR hanging in there and fighting with their oppressors. Then they go to jail, and on and on. It’s called a school to prison pipeline and it isn’t just THOSE people’s children. They’re your children. They’re mine. They’re all of our children. That’s the truth. That’s reality.
In my school expert opinion, it has reached epidemic levels. We can all see the crisis, but few are calling it what it really is. I think of it as an informal, unorganized, unrecognized, children’s school strike and it is high time that the adults in our world take responsibility for our school system failing to work for our children so that they can keep their executives and lawyers employed. It is high time that we stand up for our children. In Colorado where I live and have been a policy expert at our State Education Agency I know that the actual impact of school trauma is not only leaving our children inadequately educated, we are experiencing an alarming volume of children who SHOULD BE identified in the special education process with serious emotional disability (SED), but instead we are a beautiful, sunny and visibly family friendly state filled with fires and uncontrollable violence (including gun violence), homelessness, substance use, and ultimately premature death. To me it looks and feels like a genocide.
At the heart of the matter is the fact that our children are being shamed and blamed (pushed) into dropping out of school. The children themselves are being wronged for their perceived failure to fit into or be able to tolerate a system that is not serving their needs. And their parents are also being blamed and shamed. We all need to wake up. The failure is not the children. The failure is the adults. Specifically, the failure is the adults running the schools. In Cole’s case, it’s a team of administrators led by a lawyer who oppressed him while a bunch of well meaning teacher stood by and let it happen to him.
Shame on us all.
For myself and for my own children, we understand that it isn’t just us (even though it feels like it is). This is a straightforward systemic children’s rights issue. Something must be done to turn this train all the way around. Our own individual advocacy for our children is inadequate. Children’s advocacy is being completely disregarded. Kids are being beat down. We are all getting a beat down. And the truth of the matter is that in our state it is common practice for our school district lawyers to settle special education violation cases for lump sums of money (if your family is privileged enough to be able to retain counsel). This is perpetuating a system of human rights violations.
That’s all I’ve got for now. Back to mourning my beautiful, brilliant, and wise child’s tragic death.
These phrases have come up time and again over the last many years in conversations with my teenagers. The truth is that these phrases do not commonly come into my own mind. I wasn’t raised that way. They were never drilled into my own psyche. Thank god! And anyone who really knows me knows that’s really not my gig at all. I live authentically. Almost 💯 at this point in my life. At this point I my lifetime I am shameless and I wear my badge of shamelessness with pride.
Some people may not see me this way. That’s fine. I’m a person that some people might just call a hot mess. Yes. Others probably describe me as cold or sharp. Sometimes I am those things. And then there are some people who just call me authentic. It really depends on who is making the judgment call. I accept it all. I am who I am, as Popeye said. 💪🏼
The point is that our kids have plenty of influencers in their lives other than me and these well intended phrases got a little stuck in their psyche. They have received plenty of unsolicited advice over the years, as we all do. It’s difficult to filter it all, especially when we are young. And they know exactly who their mom is. They know I am tough as nails, kind of nuts, and am wholehearted. And I imagine that they may have thought all the things themselves about me. I guess I don’t really appear to be the norm in our circle. They know I don’t have my shit together all the time. But really…how can a person like me have all of my shit together? It’s not a simple life. Lots of moving parts. I think of it kind of like a freight train. The destination is always the key for me.
Destiny is all, as Uhtred says. I will keep praying and working hard to make peace. And I think you may be right, Cole. Peace may just be the devil’s aim. I’m coming to terms with the devils. Rest in All Your Power, sweet child. Now you are a real angel.
FEARS ARE EDUCATED INTO US, AND CAN, IF WE WISH, BE EDUCATED OUT.” KARL A. MENNINGER
Evidently some words are for sale. Or at least a few I recently learned. “Deaf” “Deaf Education” “ASL” and “dDeaf”. WTAF?!✌🏼
Last night I watched the movie CODA for the third time. The familial conflicts and the hurt and distrustful feelings expressed throughout cut close to the bone. Really close. Every time I watch a movie or a show like CODA I can relate and I find myself longing to step inside their world to expand my own dDeaf family’s world. This time when I watched CODA I tried to focus more closely on the brother’s character, the actual words, and the sibling rivalry and overall relationship.
CODA is getting a lot of attention. As it should. The actual lived experience of dDeaf families seem exotic and scary to most people. We are quite naturally misplaced into a “standard Deaf” cultural box. Believe me I know. I have lived experience now raising a child born deaf. I have a deaf heart. The truth is that the question I dread is the one I am asked most frequently. “How do you sign _____?” I actually have a trauma response to this question. Please God (7SF1s) make it stop for the love of OZShalom and peace in our own family.
The truth is that I myself have been saddled with the responsibility of being a resource for all things dDeaf related for almost two decades now. Much like Ruby who is the CODA character in the film, this is because I am a ModDYA in real life and it is quite apparently a commandment. I must do this job…or else. I suspect this label ModDYA that I’ve given myself will piss some people off. It’s unavoidable, so let’s see how that acronym flies out in the world. ModDYA = Mother of a dDeaf Young Adult. Please understand that I am trying really hard (as I have been for several years) ONLY to relate my OWN experience and perspective, especially when it comes to the BIG D. I am only human. So here’s my take.
When I became a mother to a dDeaf baby I was automatically thrust into a no win situation. Damned if I do ____. Damned if I don’t ____. It’s been a horror show, quite frankly. AND I SAY FUCK THIS. 🖕🏼✌🏼⚕️The politics in the Deaf circle are FEARSOME and FEARFUL and FIERCE. The truth of the matter is that I feel very confident that I made SOLID decisions based on our family’s circumstances and the support and information I had at the time. The ONLY decision I now regret is the cochlear implantation at such a young age. It wasn’t necessary and I sincerely wish I would have been counseled to take more time to consider the cochlear implantation when my dDeaf baby was not even three years old. We could have been supported to commit fully to learning how to communicate more effectively and inclusively as a FAMILY. I needed much more counseling and personal experience before making that decision and I do regret that I didn’t have enough of those BUT looking back the professional recommendations and a PERVASIVE AUDIST world that overvalues hearing privelege heavily weighed against me and my dDeaf baby on that one decision. I can say now that at the time it really seemed like a no brainer. Now I know much more through my OWN lived experience. I can also say that my child who is now a dDeaf young adult has assured me and even thanked me for giving them all of the opportunities I could, including the cochlear implants (which I’ve had to fight medicaid like a lLAWMOM for recently). All of that said, I wish now is that I would have waited on the implant. Waited until there was more information about my child’s development. I wish I would have trusted my own instinct to just stay the course and keep learning and using English and ASL and Cued Speech and written words and and and and. I’m a good mom. I am an inclusive person. These things I preach. In fact, I have been labeled EVANGELICAL about linguistic FREEDOM. I ACCEPT this. That feels true. Because I know that hearing is unnecessary. It’s the whole world’s FUCKED UP views that is the problem. That’s how I see things anyway.
Last night after watching CODA again I was recalling my own babies. One born dDeaf. Two were not. The twins were learning ASL before we even knew we were in a dDeaf world. My kids were being raised almost singlehandedly by me. I was their first and full time teacher. When we weren’t making our usual rounds to storytime at the library or bookstore, swimming, playing at the playground and gardens, reading and singing, doing puzzles and traveling around with friends and family, we were watching Sesame Street, Blue’s Clues, and SIGNING TIME videos. Truth. I have frequently credited SIGNING TIME videos created by another mom just like me with not only teaching us some ASL, but with also inspiring my children to learn to read. By the time we got the dDeaf identity the twins were both already fingerspelling and using and making up their own signs with each other. And neither were speaking. And then when I began cueing fluently the whole world opened up wider because now they could both understand what their own mother was saying. At the same exact time. Naturally. Only one without access to the actual sound of my voice. Cueing came easily to me (THANKS TO THE MAX OZSHALOM) and I still think it’s brilliant. It’s also ingrained in our family culture. It is the way in which we communicate whether our dDeaf family member is present or absent. I think and dream in CUED SPEECH. Truth be told, I have raised three Cuers. Two who are native Cuers. One dDeaf. One not. Many of the people we know who are dDeaf are Cuers and signers. It’s our community. https://stuckinmybra.com/2021/07/12/its-called-cued-speech/
I’m in Houston, Texas today sitting down outside the central library at a public reflecting pool resting and gathering my thoughts. My twins are now nearly twenty years old and are separated and both far away from home right now. The truth is I am grieving their rough childhood and our damaged family life. The truth is I am disappointed in the world. The truth is I am disappointed in myself because I couldn’t keep them safe from life and that is my primary objective. To keep my children safe. I wish I would have known how hostile it would really be when I had my babies. I’m also not sure that it matters how much I knew. It only matters that people are hostile. That’s the problem.
Much gratitude to a sweet and spiritual man named Larry who sensed my pain and stopped to pray for me right as I was photographing this tree. I loved that. A perfect stranger stopping to focus his prayers on me. Now I am off to daycation by myself before I head back home to my youngest and my husband who I love dearly. I have a beautiful fractured but loveable little family.
My one last thought is that I hope that my kids love and care about and will be able to support each other to grow and stay connected in love. That’s what I saw on that screen watching the movie. CODA portrayed a rough life for a good little protective and isolated family. And I hope that film will change the world for the better. Tangibly. Not fleetingly. We certainly need it.
Today Rudy turns 52 and this is his year in review. It’s a birthday gift for my fool because I am proud of him.
Last year around this time Rudy stepped up and supported our mixed family and friends to organize Solid Ground Denver, which started out of sheer necessity to support a small group of DEAF and Disabled students who are 15-21 in order to continue their formal education and develop employment skills. This meant becoming a vendor of the Colorado Department of Labor and Employment’s Division of a Vocational Rehabilitation. This proved to be a Herculean advocacy and paperwork effort in order to serve clients of this corrupt government agency. The learning curve was brutal BUT what has come out of it are solid community partnerships that have been valuable and are growing. (We are no longer doing business with DVR.)
Rudy invested our family into a membership with Volunteers for Outdoor Colorado. He jumped right into leadership training to become a project leader and he co-led his first project last August on land owned by Mountain Area Land Trust in Fairplay. We worked together with one of our twins rebuilding public trails. https://www.voc.org/
Rudy led our Solid Ground Denver family to learn farming by joining up with an organization called Grow Local Colorado last spring. Under his direction and never ending supply of personal manpower, we have now turned our little homestead in Park Hill into a Grow Local Community urban farm. He even built us a chicken run so that we can eat fresh eggs! http://www.growlocalcolorado.org/
Last spring Rudy decided to embrace life with more optimism and joined Optimist International. He was immediately tapped for the position of President in a new club called the Joint Venture Virtual Optimist Club focused on supporting the children of Firefly Autism. Here’s the club website that just went live! https://www.jvvoc.com/ PLEASE DONATE AND JOIN!
Rudy jumped in to help friend, Chef Cliff Trubowitz, to startup his new restaurant called Turnover Darling in downtown Denver. He made all of those yummy turnovers, including my favorite “French” turnover. Yum!
Rudy journeyed inward last spring under the guidance of Bud Wilson with Deep Nature Journey. He led me and our twins in a three day solo camp in the Canyonlands of New Mexico. Not easy or comfortable, but very worthwhile. We grew ourselves and learned a lot together. https://deepnaturejourneys.com/
Rudy joined on as a cast member with a theater troupe called Spackle The Crack which is producing a new live show at the People’s theater in Aurora, Colorado. Come watch them in live action on April 30 and again in May! Tickets and info here. https://www.denver.org/event/spackle-the-crack/88582/
Rudy also did the regular old family guy stuff that only our little family witnesses. He seems most proud of replacing yet another garbage disposal, but I appreciate his true life partnership in one of my most turbulent and trying years. I am grateful for this man and I love this peacefool with all of my hearts. That’s just the truth.
“My ability to focus as a father on making sure that my son is safe and not being so angry with the administration, principal and the superintendent because of their lack of empathy and concern for his well-being,” Kleckler told Steamboat Pilot & Today on Tuesday, Feb. 8. “I felt like I could no longer be effective as a school board member without wanting to strangle the administration.”
How does this sit with you? Do you think there is something wrong here? Because I do. It isn’t safe for children to go to school and career educators like these parents are being pushed to their limits.
How are we going to fix our schools without having to engage more lawyers and endanger more people’s lives? I know that’s been the way school business is done in Colorado and it’s WRONG. These are our children.
I’m still here ready to work for Colorado when you’re ready for me. I know we need the help.
Respectfully, Lisa A. Weiss Rudofsky J.D. Colorado Department of Education, 2014-2019
Please do check out this response from Children’s Hospital Colorado to the state of emergency for the children in our state of Colorado. Our mental health care system is killing children right now. Of course you know that already. I hope the new hospital mental health chief will be invited to pay some attention to the #facilityschools. Facility Schools are an important part of our public school system which is currently under reconstruction. We can fix this mess if you will wrestle it out of the hands of the mental health business executives. These school and medical businesses are vulnerable to corruption and being horribly neglected and underserved by the Colorado Department of Education. That is what I do know.
To be clear, the public schools are where most of our children should be found. It’s called #childfind and is a glaring issue systemically in Colorado under the IDEA and has been for many years. In fact, all of the children under 21 who have not yet graduated from high school who are flooding the healthcare system and flowing out onto the streets in danger and unsheltered and overmedicated could and should easily be identified in need of special education under the IDEA under the category of Serious Emotional Disability. Why aren’t they? Here’s some info from a KGNU Community Radio with Rev. Dr. Jose Silva that touches on #childfind again.
And where is the EPSDT protection? I haven’t found that yet, but that’s where I am now focusing. It is obvious to me that Colorado still has a lot of pieces of important children’s rights related regulations that need to be put together here. They are all laying around waiting to be used properly. What’s it going to take? Who do you have on all of these violations against our children?
Please be in touch soon. I am out here in the community still helping children find what they need to survive, access school, and go on to lead productive lives in Colorado. I have been privately auditing the health care, school, and vocational rehabilitation systems for the last couple of years, so this is just my pro bono policy advice.🌻
In service of children, community and ✌🏼1m3s (peace), Lisa A. Weiss Rudofsky, J.D. Solid Ground Denver ✌🏼 peace movement Vitalxchange 🌻 Colorado Department of Education, Senior Consultant, Dispute Resolution and Policy Specialist, 2014-2019
Dear Phil Weiser, Jared Polis and Colorado Access Board member Carl Clark MD and colleagues,
We would like to meet with you about how Colorado can devise a Corrective Action Plan to correct our failure to provide medically necessary services for children who are Medicaid members like we are.
Since August 2021 we have personally been researching the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) laws as we have been strenuously advocating for our own transition age children to receive a free appropriate public education, vocational rehabilitation, and access to medically necessary care in order to be able to survive and be able to attend school and work.
EPSDT is the child health component of Medicaid. Federal statutes and regulations state that children under age 21 who are enrolled in Medicaid are entitled to EPSDT benefits and that States must cover a broad array of preventive and treatment services. Unlike private insurance, EPSDT is designed to address problems early, ameliorate conditions, and intervene as early as possible.
We have discovered that Colorado Access does not have the processes in place to be able to comply with EPSDT and this must be rectified immediately. For Colorado children enrolled in Medicaid and entitled to EPSDT, the program is a vital source of coverage and a means to improve their health and well-being. Please be aware that where states have failed to implement EPSDT law, families have sometimes brought lawsuits in an effort to secure a remedy. We sincerely hope that we will not be forced to bring lawsuits for our own children due to Colorado’s non-compliance, but we are definitely being forced into that position right now by Colorado Access administrators’ actions and inactions.
Please be in touch at your earliest convenience. In the meantime, we will continue to pay out of pocket and use all of our family’s resources to ensure that our children’s medically necessary and education needs are met to the best of our ability. We are sincerely concerned about children and going broke protecting and advocating for our own. We have no choice. We have been unable to get your attention other than resorting to social media at this time. We hope you understand.
Respectfully and in service of our family, school, community, and 1m3s (Peace), Lisa A. Weiss Rudofsky J.D. and Jason Rudofsky
I took this photo of myself voicelessly whistling. Even though I am a whistleblower, 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 Mental 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 suicidal children have not received good care, if any at all, as private and medicaid insurance paid patients of Mental Health Center of Denver and I want my friends to know. I want the whole world to know. That’s an understatement, but the truth is I’m trying to tone it down. That’s the directive I’ve gotten used to while working inside Colorado’s state education agency. And it’s also really upsetting to have to bare my soul and air my dirty laundry just to raise awareness. It’s sickening and maddening to realize that LinkedIn is a more effective way to get the attention of human service business owners and most of them are just out for themselves anyway. 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. It also requires hiring lots of attorneys and wasting a lot of time, 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 children told us that they did not know how to request prior authorization from Colorado Access Medicaid for different levels of care outside of Mental Health Center of Denver until we advocated for it. Now at least these few people who work for you 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 or our children. 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/public relations 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 medical industry standard?
This little girl in the middle is law. law was born sensitive and strong and confident. law grew up in a good solid home with a family who loved her and cared for her well. law attended Denver Public Schools.
law 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. law was called a “tomboy”. law loved to read and write, roller skate, play tennis, soccer, swing, and swim.
Denver Public Schools labeled law as a gifted learner and an advanced placement student, but when law was in high school she became bored with academics, preferring to focus on athletics and part time employment where she felt confident, was actively engaged, and learned skills from her experiences. law didn’t like school very much anymore, but she still loved to learn. law was always a dependable worker and a talented athlete. law had dreams of becoming an international tennis star, a journalist, and a civil rights lawyer. law also struggled with a sleep disorder, gastrointestinal issues, and some hypersensitivities.
LAW left home at 18 to pursue an undergraduate degree in journalism from University of Colorado Boulder. LAW became insecure about her writing abilities and study abilities and switched her major to match her subject matter interests. LAW focused on studying history and eventually determined to also become a school teacher. LAW 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. LAW was really a natural born peace maker.
LAW studied to become a paralegal first and earned a certificate at Denver Paralegal Institute. This gave LAW the confidence LAW needed to apply herself to law school. LAW graduated from New York Law School in 1999 and shocked even herself when she passed the New York bar exam with high scores. LAW had never felt confident as a traditional student, but she still went on to hold positions at prestigious places. LAW worked at the New York City Law Department where she argued in the court of Sonia Sotomayor, LAW 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. LAW found that she enjoyed the law, but she wasn’t built to fight so LAW became a Mediator and focused on her writing. For six years LAW served as a school law policy specialist and senior consultant for the Colorado Department of Education.
LAW realized as an adult that she is actually autistic, what it means to be gifted, that LAW can still play like law, and that LAW is already a teacher and a writer and that she most loves being a Mother. LAW mothered three children.
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 by sharing our stories.
P.S. The boy on the right is my brother Danny L. Weiss . The boy on the left is my cousin David Wilson Booth. Weren’t we all adorable in 1973? ✌🏼💌