“I Really Shouldn’t Be Here.” (Who is Lisa Lightner?)

If you’ve stumbled upon this site, or if you follow me on social media or email, you might be asking yourself, “Who is Lisa Lightner?”

Well, I’m going to share my story here on the About page. Lots of websites and blogs have “About Us” pages, and most of them are a list of accomplishments. For over 10 years, that’s what mine was–a list of media accolades and awards, things I had done. (you can see mine in that link, if you really care)

But that’s what I’ve done, as an advocate. It’s not who I am, as an advocate. And who I am shapes my philosophy and my work much more than my accomplishments, so let’s dig in. After each section, I’ll list my life lesson, and how it has shaped my advocacy.

(this is really hard for me, I’m a pretty private person!)

“I really shouldn’t be here.”

Why did I make this the title of my story? Well, because my story isn’t very pretty. It’s filled with a lot of hardship and struggle. I don’t share my story often, because when you share hardship and struggle, you share vulnerability. And I hate that.

But, several years ago, my brother got stuck in an airport with an unexpected layover. He went to the closest bar, pulled up a chair, and ended up spending the next several hours sharing our story with an anthropologist of some kind.

And that person told my brother, “I chat with people like this from all over the world. Based on your childhood and upbringing, you really shouldn’t be here.”

Now, that’s not to say that we should be dead. But, despite what we’ve been through, we live pretty ordinary lives. Dead is certainly a common outcome for kids raised like us. Poor, without a home, jobless, in prison or in the throes of addiction are other likely outcomes.

So, here’s an overview.

A Trauma-Shaped Childhood

First, I am a classic Gen Xer. Born right in the middle of that generation, and living many of the shared experiences of that generation. Except for a few things.

I was raised by addicts, for starters. Both of my grandfathers were alcoholics. One died (at 56) before I was born. The other died when I was a toddler.

Back then, we didn’t know about the genetics of addiction, but it runs through my family.

Both of my parents were active drinkers my entire childhood. As far as my dad, I only remember him drinking in the evenings and social occasions. When I was an adult, I saw him drink sometimes as much as a case of beer in a day.

But my mom? Whew! Active alcoholic, keep-wine-in-the-linen-closet and passed out when I got home from school type of alcoholic. If I think about it, I can still smell and feel the vibe I would get upon coming home from school. The moment I touched that doorknob, I knew what I was going to find. And it was either–

• A mom who was sober. Well, not sober, but not drinking that particular day.
• A drunk mom, slurring her words. During these times, I’d be told her sob story of “what could have been” and that she basically hated staying home as a mom.
• A passed out mom.
• The house would be in various states, sometimes clean, sometimes filthy with flies and garbage on the counter.

During this time, my brother was not born yet as we are 9 years apart. My dad travelled a lot for work and usually wasn’t home Monday through Friday.

When I needed help, I asked for help from my Nana Mary (my paternal grandmother). I would call her and say that my mom was sick, and she knew exactly what I meant. She’d drive down to my house (a 90-minute ride) and care for me. She and my mom would fight.

Then, she’d tell my dad. So when he got home from his business trips, they’d fight. On several occasions, I remember waking up at night to them fighting, and there was a gun involved. “Just shoot me!” my mom would yell.

Afterward or the next day, my mom would yell at me for calling Nana Mary and asking her to come down. My dad would tell me to call him and not Nana Mary.

But….that’s not even the worst of it. My mom died in 1979. I was told she had an aneurysm. I would later learn that it was acute alcohol poisoning (I have her death certificate and it states this). My brother was 3 months old when this happened.

As far as I can recall, she did not drink during pregnancy. Or, if she did, my brother is lucky to have gone through it unscathed.

She probably had postpartum depression, but that wasn’t really a thing in 1979. Nor was anyone talking about women and alcoholism. The Betty Ford Clinic didn’t even open until 1982. In the 70s, alcoholics were homeless hobos on the street.

It’s important to note that much later in life, I would learn that she had anxiety disorder, pretty bad. Half of all women alcoholics have anxiety. I do have memories of her taking valium. I do not know if that contributed to her death or not.

After her death, we did a funeral, I took a week or two off from school…and that was it. We never talked about it again.

Not me, not my dad, not my Nana Mary. It was a taboo subject.

Life Lesson

This is why I have so much trouble asking for help. For the first 10 years of my life, I was scolded for doing so. That has certainly shaped who I am and my relationships. It also takes a toll on me because I think I have to do everything myself, which is exhausting.

I encourage all the adults reading this–if you have a child in your universe who is way ahead of their peers, “wise beyond their years” or “so mature for their age” I beg of you to take a second look.

I could cook a grilled cheese and scrambled eggs at 5. I was taking care of a newborn at 9. “Such a good helper” and “so independent” is how I described. Cooking a grilled cheese at 5 is survival. It’s how I ate. It’s because the milk was always sour, so I couldn’t eat cereal. But white bread and American cheese–most households have that.

It also has given me a tremendous appreciation for all the students who have gone through trauma. In particular, those who are gaslighted and blamed along the way. Or, those who are just told to ignore it.

I’m an overcommunicator with my son. He’ll tell me to stop asking so many questions. I remind him several times a month that he can talk to me about anything. I wasn’t allowed to talk about anything.

Lastly, it’s why I’m so passionate about informing people and pointing out how alcohol is marketed to women. Rates of female alcoholism are skyrocketing, and we’re normalizing drinking wine at school events or at the end of every day because “being a mom is hard.”

Being a mom is hard, but we need to promote healthy coping mechanisms. Big Alcohol just wants more customers, which is why they’ve turned to promoting it to more women. Doubles their customer base!

Trauma at School

Being raised by alcoholics is traumatic, for sure.

But, the trauma didn’t end when I left the house each day.

In 1977, I was “labeled” as gifted. I still have the letter from the East Penn School District to my parents, inviting me to participate in their gifted program.

I don’t remember if I was given the choice whether or not to participate, but I participated.

And I hated it, for several reasons.

First, only the bookworms or nerds did gifted. It really wasn’t the cool crowd, and I so desperately wanted to be cool.

Second, I was also in Adapted Phys Ed, because I was so terribly unathletic. If adapted PE and gifted isn’t the uncoolest of the uncool, I don’t know what is.

The last things that I really hated about gifted was that one, I had to miss art every week and I really liked art. I often wonder what might have been, if my interest in art had been cultivated rather than completely shut down for several years.

And two, I had to go from Lower Macungie School to Wescosville School for gifted, and take a different bus home on those days.

Wescosville had older kids, whereas Lower Macungie only went up to 3rd grade. The kids on the bus would bully me and refuse to let me sit with them. I would basically spend the entire bus ride going from seat to seat, being rejected and having the bus driver yell at me. It was a game for them to do this, every Thursday.

It was the 70s, and the school didn’t know what to do with this group of smart kids. The gifted program was not at all beneficial. We played boggle and did Olympics of the Mind…but not anything useful. Mostly we were bullied and made fun of for being so smart.

Again, it was the 70s and 80s, so I’d like to think that most kids today are bit more accepting of those who are different from them. The 70s was still very close to the idyllic 50s and stereotypical family. Which, mine was not.

I certainly gave the bullies lots of fodder. I didn’t have a mom, and yes, I was bullied for that. Divorce was still taboo. But death? That was something beyond the pale.

Nana Mary came to live with us, and nobody had their grandmother living with them. I had to share a bedroom with her which is not ideal for any tween or teen.

To recap: Unconventional family, alcoholic dad, and bullied at school.

I also participated in school avoidance or school refusal, though it wasn’t called that then. On adaptive phys ed days, I’d “forget” my gym shoes or I’d wear a dress. On gifted days, I’d be absent.

Life Lessons

My personal experience with bullying, gifted programs and trauma have shaped my advocacy and really rallying for kids.

If a gifted program isn’t meaningful, why are you doing it? Make it meaningful. And, even if it is meaningful, if the child hates it, why are you doing it? If challenging a child academically is the goal, is there another way to achieve this?

I also experienced school avoidance, so I am diligent about getting at the root causes of it for today’s kids.

And bullying? Don’t even get me started! Bullying is the hill I will die on, for kids. I was gaslighted. I was told to ignore it. Toughen up, don’t be so sensitive.

I was told everything except, “What’s happening to you at school is wrong, and we’ll make it stop.” And that is what kids need.

You know what else I learned? Heal the bullies.

Because as a teen and young adult, I was a bully. I’m not making excuses, but it was those early life experiences that made me a bully, seeking acceptance from other bullies, by joining in.

No pun intended, but I also struggle to accept my “gifts” or being gifted or smart, or my other talents. Because I was mocked relentlessly for it. I have a lot of trouble accepting compliments.

I find it difficult to praise my kids, but not to overload, if that makes sense. My teen will say, “You have the mom goggles on” when I compliment him sometimes. Kids need meaningful praise and constructive criticism–and help. It’s hard.

The Teen Years: More Verbal Abuse

My dad remarried in the early 80s. She was a divorcee with two kids. I was sooooo excited and eager for this to happen. I couldn’t wait to have a Mom again, and be able to stop explaining why I didn’t have one.

That ended quickly.

Her kids despised me from the get-go. First, the adults decided that we would all live in the Macungie house, so they had to switch schools. I’m not sure why I was the recipient of this resentment, but I was.

I would snoop in their things, and I found diaries and journals where my stepsister talked about how much she loathed me.

My stepmother showed incredible disdain for me. She was a teacher.

Our house was not big enough for 6 people. We had 3 bedrooms and one bathroom. One. Me and my stepsister were forced to create a makeshift bedroom in an unheated basement (in Pennsylvania, where it gets cold in the winter).

My dad and stepmom took one, my real brother took the other because he was a toddler. My stepbrother (older than me) took the third, because they didn’t think it was fair to make the boys share a room with their vast age difference.

Per my stepmother, I was not allowed to shower at home during junior high and high school. I was told to shower at school, save on hot water. I was told this was for two reasons–that our bathroom couldn’t handle 6 people needing to bathe, and we couldn’t afford all that hot water.

For a teen girl who wants to “do her hair” in the morning before school, this was a nightmare. Sometimes, I’d set my alarm for 5 am, so I could shower before everyone else. Nope! She would pound on the bathroom door and scream at me to get out, that I was not allowed to shower at home.

This is just one example of how completely unreasonable she was. There were other incidents like her throwing out my clothing.

She was all over the place. She never bought me anything–no clothes, no personal products or toiletries or school supplies, nothing. It was because she said I was “spoiled” and had too much and that Nana Mary spoiled me. So she never bought me anything, then she’d criticize me when I’d spend my own money on clothes. I don’t know what mental illness she has, and I’ve stopped guessing. But her actions are not normal.

In 1987, they built and moved to a new house. Even though I was still in high school, it was made clear to me that this was HER home, not mine. And that I was to leave at age 18.

As a child, I was never comfortable or welcome, in my own home. That takes a toll on you.

Life Lessons

I go a bit overboard, balance is hard for me…but I always want my kids to be comfortable and welcome and safe in their own home. Be able to let their hair down, be who they are, no matter what.

I’ve had some relatives give me the side eye and say that I spoil them. I don’t think I do. I also don’t think that just because I had to suffer as a kid, that they should have to suffer or have hardships in some way.

I have accomplished much in life and in my business. Imagine what I might have done if I’d had a different starting line.

Not everyone gets the same starting line, and we need to realize that about children. Alcoholism, abuse, poverty, incarceration, death….some kids are dealing with A LOT.

As an adult, I would learn I have GAD and ADHD. But, I did not know this as a child. Essentially, I was 2E before 2E existed.

And, all of my ‘shortcomings’ related to my mental health issues (and don’t forget the trauma!) were treated as character flaws. “Lisa doesn’t work to her full potential” and “Lisa is really smart, if only she’d try harder.” I felt like I was giving it all, I had nothing left to give.

It was never good enough. Not only was it not good enough, I was a bad person for not doing better. I was told I was making the choice to not do better. Spoiled, lazy, entitled…you name it, I was called it.

Since she was a teacher, she’d often yell, “I AM AN EDUCATOR” implying that she was the expert. She was a teacher with a master’s degree, so surely she knew, right? Well, my dad believed her.

Then again, he was a very lazy man. For him to discover more would require work, and my father didn’t like work.

I could list examples for days, but she was extremely passive-aggressive, bitter, resentful, mean and verbally abusive to me, my brother, Nana Mary and then my kids…for my entire life. When I’d go to my dad, who was an active alcoholic the entire time, he’d gaslight ME. “Don’t be like that” he’d say.

Despite only living 75 miles apart, my Dad and I saw each other maybe once a year in his later years. You insult my kids…as my stepmother and stepsister did, you don’t get access to us.

As an aside, both of my stepsiblings were in cults at some point. I don’t know if they still are. But that just added a whole other something to everything.

Life Lessons

If you’ve made it this far, thank you. All of this together–the trauma, GAD, ADHD, 2E, verbal abuse, bullying–all of this has shaped why I am such a passionate advocate for kids going through the same thing.

How you’re brought up really shapes who you are, and many of us have a lot of unlearning to do. It takes time. I still find myself having untrue or unhealthy thoughts, or sometimes dropping a gaslighting phrase to one of my kids.

Change is hard.

Adult Life and Becoming a Parent

I won’t bore you with my college years and adult life. Honestly, other than meeting my husband and a few lifelong friends in college, much of it is insignificant. I’ll try to keep this brief.

What matters is my kids and how that changed me and actually turned me into an advocate.

Timeline

So here is how I got into advocacy, this website and now the training. And my trials and tribulations along the way.

• 2000s Kevin is born and diagnosed with a chromosomal duplication. (I don’t want to give the actually year, for privacy)
• 2007: At my job, my supervisor has “the talk” with me about taking so much time off (I had to, to tend to K’s needs.). I leave that job and begin teaching at a CTE. I liked the job and it had family friendly hours.
• 2009-10: Lots happens. My second son is born. K is at an all special needs preschool. My husband is hospitalized with pulmonary embolisms. I have a newborn and a disabled toddler at home, and trying to work full time.
• 2009-10: Workplace drama. Right out of Mean Girls, two coworkers make up a bunch of stuff about me. My Asst Principal has a chat with me. Actually I have several chats with admins about my job performance.
• 2010: My job description ‘suddenly’ changes and I’m no longer qualified to hold my teaching job. To remain in the position, I’d have to go get an Associate’s Degree (I already have a B.S) and do on the job training. It is literally impossible for me to do what they are requiring me to do, and work there. I am terminated.
• Because we’re on the heels of the 2008 recession, I qualify for 99 weeks of unemployment payments. I had two babies in daycare, and was driving 33 miles one way. I am now making more on unemployment than I was teaching.
• I use that 99 weeks to retool. K’s preschool offers a 12-week program on special education advocacy. I take the training, then volunteer for them, then hired PT.
• 2010-2012: My budding advocacy career, and I LOVE it. I love helping these kids…and find that I have a real knack for it.
• 2012: I have a meaningful conversation with my mentor, which steers me down the path of lobbying and systems advocacy. Again, I find that I love it, and that I’m really good at it.
• 2012: But…my mouth gets me in trouble. I speak out against some state funding issues, and how special education is funded at charter schools and cyber charters. The Exec Dir of the agency where I’m working does not like this, and I am given an ultimatum–stop speaking out about this, or quit.
• 2012: I quit working for the agency and begin taking clients on my own. The agency was only paying me $20 an hour, so after taxes and child care, I was barely breaking even anyway.
• Worth noting–until 2013, I had a coupon blog and was an extreme couponer. I meet another advocate at the training who “wants to start a blog.” So, we start this blog in 2011 because I was already active in blogging. She leaves 6 months later, says she doesn’t really enjoy it.
• 2012-2015: I am just jamming! Personal advocacy, lobbying, blogging….it’s tons of fun and I love this new career. I love working for myself and having the freedom to help kids, and speak up when necessary.
• 2012-2017: I testified several times before State Senate Committees about school funding. I also met with the US Department of Justice about school discipline. I was really rockin’ the lobbying, and it’s still my favorite thing to do.
• 2015: Kevin has his first seizure. He goes from one seizure to daily unmanageable seizures in a matter of weeks. I am a great, albeit unreliable, advocate because I have to cancel often to tend to him.
• 2018: K’s seizures are completely unmanageable, and I pivot to doing mostly blogging and online advocacy.
• 2019: K has an experimental brain surgery to stop the seizures.
• Early 2020: K’s seizures are under control and now we “see” other issues because we can actually focus on something besides seizures. He gets a gtube in February.
• March 2020: Well, we all know what happened here!
• Spring/Summer 2020: The blog just completely explodes and takes off, as parents have so many questions about the pandemic and their IEP. Some months, I get over 1 million visitors.
• But….it’s the pandemic. So, advertisers are leery of spending, the economy…and so despite having 1 million visitors, I’m making peanuts. This trend carries through much of 2020.
• By fall of 2020, I’ve heard from so many parents who need help. I figure out a way to replicate what I’m doing, because there’s only one of me. And, I can only attend so many IEP meetings in a day. (3, that’s the max, I’ve found lol)
• 2021: Don’t IEP Alone is born!
• 2023: The Teacher IEP Toolkit is introduced.

And the rest…as they say…. is history.

Life Lessons

While my early years shaped who I am, it’s what I learn as a parent and business owner that I’m really proud of. Because it’s intentional learning and personal development. It’s not a bunch of crap thrown at me, like when I was kid, and just have to figure it out to survive.

So, as that anthropologist explained to my brother, not everyone makes it out. (My brother is fine too, btw). I do know of parents who have a child with extreme disabilities or medical conditions, and the parent walked away and said, “I can’t do this.” Or even, “I don’t want to do this.”

Husbands do leave wives that get breast cancer sometimes.

Not everyone sticks around.

Those who do stick around, it’s not always joyful. There may be an addiction. Spouse abuse. Depression and suicide. People are dealing with a lot, behind closed doors.

I’ve learned to not ask why people do things. It’s not a good use of my time. And, we don’t know if they’re even being honest, anyway.

The karma train is late sometimes…but it always comes for you. I don’t seek revenge. But, that doesn’t mean that I don’t smile when I hear of bad luck (usually fostered by the person’s own choices) affecting someone who has wronged me along the journey.

I may smile, and then get on with my life. Because creating positive change for our kids is what I intend to do. I’ve made it happen for kids–on both an individual and systems level.

Why am I so resilient? I don’t know. I wish I knew, because I would use my platform to help others who struggle to get up the next day, and put one foot in front of the other.

If you made it this far, thanks for reading. And I hope you stick around. I truly appreciate each and every one of you, and I truly believe that if we stick together, while it may not happen at the speed that we desire, that we can create real change for our kids. It’s going to take all of us–parents and teachers.

Or, at least, I’ll die tryin.