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Lisa Lightner

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Blog Entries posted by Lisa Lightner

  1. Lisa Lightner
    When people look back on this past year, I don’t think they’ll see the end of special education as we know it. More likely, they’ll see a beginning-- the moment families, teachers, and advocates woke up and said, “No more.”
    Because it’s been a year of reckoning.
    The quiet dismantling of the Office of Special Education Programs (OSEP).
    The shifting of oversight and accountability to people who don’t understand (or don’t value) the protections that have held our system together for five decades.
    The slow erosion of transparency, enforcement, and trust.
    We’ve seen what happens when leadership treats IDEA as optional paperwork instead of a civil rights law. And in that loss, many of us have realized just how much we’ve been taking for granted.
    For years, we assumed the procedural safeguards would always be there....that progress reports, individualized goals, and FAPE were untouchable. Even if we were fighting to get FAPE for one kid....we thought “they can’t possibly take it all away.”
    And then they started to. Chipping away at protections, agencies, civil rights.
    But something else is happening too.
    Parents who never thought of themselves as advocates are showing up, reading the law, asking hard questions. Teachers who once felt silenced are finding their voices, demanding the training and tools they deserve. Communities are connecting....online, in meetings, in living rooms....because we all feel what’s at stake.
    This awakening isn’t about nostalgia for what IDEA was. It’s about recommitting to what it promised.
    Fifty years ago this month, Congress passed the Education for All Handicapped Children Act; what we now call IDEA. It was born out of struggle, lawsuits, and heartbreak. It guaranteed that children with disabilities would no longer be excluded, hidden, or ignored.
    That law wasn’t a gift. It was a fight. And it will take another fight to protect it.
    As we mark IDEA’s 50th anniversary, let’s remember: we are not at the end of anything. We are at the beginning of a new phase.....one that demands vigilance, collaboration, and courage from all of us.
    Every parent who documents, every teacher who questions, every advocate who refuses to give up, that’s what keeps IDEA alive. Because rights only matter if we insist on them.
    Fifty years later, the promise still stands. But it’s our turn to make sure it’s not just words on pape, it’s action in every classroom, every IEP, every child’s life.
    LL
    PS: I wouldn’t ask if it didn’t matter....but clicking the links in my emails really does help me keep doing this work. Thank you for supporting small, independent creators like me--AI is killing our sites right now. Almost to the point that it won't be sustainable.
  2. Lisa Lightner

    It's just a shitty thing to say.

    By Lisa Lightner,


    Sunday Night Emails
    {this is an older post that was deleted and now brought back}
    Can We Please Stop Doing This? At All Ages.
    This is one of those posts that’s been sitting in the back of my mind for years. It’s something that rubbed me the wrong way when my son was first diagnosed, but I never really said much about it publicly.
    Back to the Beginning
    If you’ve been on this journey for a while, you probably remember those early days after the diagnosis — meeting other parents, finding your footing, trying to build your little community.
    I remember it vividly. I met so many families, some who became trusted friends and others who just weren’t the right fit.
    And in one particular group, there was something that happened over and over — something that made me step back completely.
    It was the “Oh, just you wait…it’s going to get so much harder/worse!” speech.
    Have you heard it?
    I Just Wanted to Enjoy My Baby
    Back then, I didn’t want to live in fear of what might be coming. I wanted to enjoy my baby, celebrate milestones, and focus on Early Intervention, one day at a time.
    But instead of encouragement, I kept hearing doom and gloom.  People who were supposed to be my support system were telling me that things would inevitably get worse.
    That was not the moral support I was looking for — so I quietly walked away.
    Because honestly, babies are fun. Toddlers are fun. And yes, it’s exhausting and overwhelming at times, but when you tell a new parent “it only gets worse,” it doesn’t prepare them. It discourages them.
    So I stopped going to that group, stopped answering messages, and went back to focusing on my family and our small victories.
    Fast Forward Ten Years
    More than a decade later, I started reconnecting with some of those same parents, accepting friend requests, showing up at events, joining the same online spaces.
    And wouldn’t you know it? Within a few weeks, I heard it again.
    An older, “more experienced” mom said:
    Womp. Womp.
    Really? After all this time, we’re still doing this?
    I Get It. But…
    Yes, having an autistic one-year-old is different from having an autistic twelve-year-old. But different doesn’t automatically mean worse.
    Of course, there are new challenges as kids grow. It’s easy to pick up a two-year-old having a meltdown; not so easy when that child is twelve and taller than you. But there are also challenges that fade — sleepless nights, endless therapies, the uncertainty of those first evaluations.
    It evens out. It changes shape.
    When we warn newer parents that “it’s all downhill from here,” what purpose does that serve? Does it change their child’s outcome? Help them prepare? Or does it just rob them of the joy they could be feeling right now?
    Let People Enjoy Things
    We can acknowledge that this life is hard without taking away someone else’s hope.
    Telling parents “just you wait” doesn’t help them build resilience — it teaches them to expect suffering. And that’s not the message families need.
    The reality is that every stage brings its own mix of challenges and wins. Some seasons are heavier; others are lighter. But no one benefits when we act like difficulty is inevitable or universal.
    I’d argue that warning parents like that checks maybe one box out of five for being “true and important.” Because it’s not true for everyone, and it’s certainly not helpful all the time.
    So maybe the better thing to say is:
    Because that’s the truth, too.
    Let’s Do Better for Each Other
    Parenting a disabled or neurodivergent child already comes with enough unknowns. The last thing any of us need is more fear layered on top of that. What we do need is connection — people who can say, “Yeah, I’ve been there. It’s hard sometimes. But you’ll find your way, and there are still plenty of good moments ahead.”
    The best gift veteran parents can give newer ones isn’t a warning. It’s perspective. It’s reassurance that the love and joy you feel now won’t disappear just because your child gets older — it just changes shape.
    We can tell the truth without crushing hope. We can share our experiences without predicting someone else’s future. And we can build a community that encourages, not alarms.
    Because this journey is already hard enough. Let’s make sure we’re the soft place to land.
  3. Lisa Lightner

    I'm really more of a Carla than Diane.

    By Lisa Lightner,


    Sunday Night Emails
    So...Norm from Cheers died. I know, I know—dating myself a bit. But I loved that show. Still do. Hulu thinks I need a rewatch and honestly? Some of the episodes have aged like milk. (Yikes.)
    There was one that stuck with me, though. Sam signs Diane up for a “barmaid beauty” contest. She’s horrified—because, duh, Diane. But she goes along with it, and by the end, she realizes that winning gives her a bigger platform to speak out about objectifying women.
    Anyway, it hit me: I’m in my own Diane moment. Personality wise, I'm much more like Carla, I think. Good hearted--but tough, snarky exterior.
    My book is coming out in a few months. I’m proud of it, and I want people to read it—because it’s a steal at $25. But here’s the bigger thing: if this book does well, I get a louder megaphone. To talk about our kids. Our IEP mess. Our lack of funding, meaningful solutions, progress and accountability. You know, the stuff no one else wants to touch because "only 15% of kids have IEPs." 🙄
    So here’s the ask: Buy the book. Gift it if you don’t need it. Click the Amazon link even if you can’t buy it—because Amazon thinks clicks = quality and will show it to more people.
    Thanks for reading. Thanks for helping me be the loud, annoying Diane we need.
    LL
    P.S. Here’s the link to the book (because you know I don’t do vague). If you don't want to support Amazon, there are other options to purchase it. But please at least click the Amazon Link. 
  4. Lisa Lightner

    I almost didn't send this.

    By Lisa Lightner,


    Sunday Night Emails
    Hey.
    I almost didn’t write tonight’s email.
    I’m tired. You’re tired. And honestly, it’s been one of those weeks where everything feels just slightly off. The kind where you open your inbox, think “I should deal with that,” and then… don’t.
    But that’s exactly why I write these. Because if I’m feeling it, I know some of you are too.
    I was supposed to speak at an event in Chester County yesterday. They asked me Thursday, while I was elbow-deep in a cart at BJ’s, hunting for pullups. I said yes. Of course I said yes.
    Then Friday morning hit, and I realized: oops, scheduling conflict.
    In our house, someone always has to be with Kevin. Always. No exceptions. Finding paid caregivers is tricky on a good day, let alone with short notice. And especially with his size, medical stuff, and behaviors.
    I asked myself: Do I have it in me to scramble for a caregiver? Write a speech? Coordinate rides? Pack his things? Manage behaviors in a loud, crowded event space?
    As it turns out....no, no I did not.
    I even thought about just bringing him. He’s been to plenty of rallies and protests over the years. But that was back when things were more stable. When his seizures and behaviors were better managed.
    Could I train my cousin Sharon and my friend Brett (both willing but untrained) to care for him while I was up on stage? (that's who I was going with)
    Again… no, I didn’t have it in me. Not this week. Not with a client IEP meeting on Friday too.
    And here’s the life lesson in all this: Sometimes, the most powerful thing you can do is say no....even to the stuff that matters. Because when your cup is empty, it’s empty. You can’t pour from it, you can’t fake full, and you sure as hell can’t show up as your best self.
    We do so much juggling. And guilt-tripping ourselves into being everything, everywhere, all the time isn’t sustainable.
    So if you’re also tired, and a little off, and letting a few things slide....same.
    You’re not alone. And you don’t have to be everything this week. Sometimes, showing up for yourself is the most important advocacy you’ll ever do.
    And then, in other news (because why not?) two campaign signs were stolen from my front yard. One was for a local school board member. The other? My friend Susan, who’s running for mayor of our teeny-tiny town (pop. 1500).
    Yes, someone actually took them. Both. Losers.
    So this week? We’re letting it go. We’re not fighting the battles that can wait. We’re staying home instead of forcing ourselves to show up when we’re running on fumes.
    Here’s the thing: Sometimes the most powerful advocacy you can do is for yourself. Rest. Say no. Recharge. It’s not a failure, it’s the strategy that keeps you in the game.
    We’re not machines. We’re humans. Parents. Caregivers. And sometimes... just tired.
    Take care, LL
    PS: If you have a school board election coming up, and the candidates are having forums, here's a list of questions to ask: "I'd Go, But What Would I Ask?" School Board Candidates and Special Ed Questions
     
    *Please note: the posts here that are in the "Sunday Night Emails" category are just that--previous emails sent out on a Sunday night. The dates/times/content may not match up with present day events because it was sent out a while ago.
  5. Lisa Lightner
    Normally I send my Sunday email out later...and had it scheduled as such. But, that can wait until next week, I couldn't not send this out today.
    Remember when some folks said, "It’ll be so much better now"?
    Yeah. About that…
    In case you haven’t heard, OSEP (Office of Special Education Programs, the federal office that oversees special education) has basically been wiped off the map. It’s part of a much bigger plan to gut the Department of Education. All the employees were fired Friday.
    Scary? Yep. But here’s the thing.
    OSEP never came to your IEP meetings. They weren’t the ones reading your emails, reviewing your data, or helping you push back. You were. You are. The real work, and the real wins, have always been at the state and local level.
    And, the same goes for teachers. I mean, I actually did a webinar for them once--and like 60 teachers came. And that's out of alllll the teachers in the country. So sure, OSEP offered training and resources....but many of you are finding resources elsewhere (like on my site).
    And you’re not alone.
    I just published a full breakdown of what’s happening, what this means for our kids, and what you can do right now to protect your child’s rights.
    Read it here: https://adayinourshoes.com/osep/
    We’ve got work to do. But we’ve done hard things before.
    -Lisa
    P.S. The IEP Toolkit and Don’t IEP Alone were built for moments exactly like this. If you need a plan, they’ve got your back.
     
    *Please note: the posts here that are in the "Sunday Night Emails" category are just that--previous emails sent out on a Sunday night. The dates/times/content may not match up with present day events because it was sent out a while ago.
  6. Lisa Lightner

    The girls weekend, that wasn't.

    By Lisa Lightner,


    Sunday Night Emails
    So I was supposed to go on a girls’ weekend this month with some college friends. You know — shopping, eating, flannel pajama pants in a rented house.
    And then someone in the group chat said, “Can we not talk about politics this weekend?” And the others chimed in with, “Yes, please!”
    And listen, I get it. I talk about politics a lot. It’s who I am. It’s literally my life’s work. Disability rights are politics. Public education is politics. Your kid’s IEP? Tied to federal law..... which is... politics.
    But when I hear “Can we not talk about politics?” What I actually hear is:
    🧨 “I don’t agree with your politics.”
    😬 “Your values make me uncomfortable.”
    😬 “I’d rather not talk about hard things.”
    And you know what? That’s fine. But I’ve reached a point in life where I only have space for people who get it or at least try to. Who see me, and more importantly-Kevin, and this community.....as worth fighting for.
    I get accused of being ableist when I talk about how hard this life is....but our day to day life is very hard. I'm not complaining about my son--it's the lack of support and resources for people like him. Our current state of society is that parents are propping up the caregiver system for disabled adults. I have adult man in my home with limited communication skills, who is larger than me, who has to be watched 24/7 because of the unsafe decisions he makes.
    If I'm going to go to all the work to get away for 3 days, it's going to be surrounded by people who support me, otherwise....why go? If I can't share my concerns and fears about my family with this group of "friends" then what am I doing?
    So I won’t be going. It sucks. But it’s also clarifying. Now I know.
    Sometimes people leave your orbit. Sometimes you nudge them out with a gentle shove and a “no thanks.”
    Either way, protect your peace. I'm not going to shrink myself to make others comfortable. A page follower once left this comment, I drag it out when I need to read it.
    https://birdmail.s3.amazonaws.com/images/1628/20251005071759558393322_1250243270474770_6954851012484251517_n.jpg
     
    Talk soon,
    LL
    PS: If you're online ordering books, don't forget to order "Your IEP Playbook." Shipping no later than 8 days!
    PPS: I've had people reply to some of these emails and ask if there was a way to share them. Well, you can either go full 1998 like my dad....and forward it to your entire email address book. 😂 But, if you're patient, I will get them up in the blog section of the Village. It's also been brought to my attention that this online village of mine operate very similarly to Substack. I don't subscribe to any substacks, but for months, people have been suggesting "you should start a substack." Turns out I already have one, and it's free.
     
    *Please note: the posts here that are in the "Sunday Night Emails" category are just that--previous emails sent out on a Sunday night. The dates/times/content may not match up with present day events because it was sent out a while ago.
     
  7. Lisa Lightner
    I have this neighbor who has become one of my closest friends. Years ago, we both decided we needed to walk more, so we carved out time...even with six kids between us, two IEPs, and busy work lives. Now we manage to get in 4–5 walks a week. It’s one of the best things I do for myself.
    This morning I got to our meeting spot first. While waiting, I heard an odd sound and, being the bird nerd that I am, looked up. There was a pileated woodpecker hammering away. If you’ve never seen one, they’re rare to spot, huge, striking birds with a bright red plume. I stood there wishing for my phone to snap a photo…but then caught myself.
    Why? Because it reminded me of all those concert videos people post. They pay hundreds for tickets, yet spend the whole night behind their screens instead of just enjoying the music. I almost did the same thing...for a free, fleeting, beautiful moment. So I took a breath, stayed still, and let myself just watch.
    Later that day, I came home from basketball practice with B to find K’s room littered with shredded pages. My heart sank. Several vintage Sesame Street books, gone. But instead of reacting, I sat with him. And then I noticed: every scrap had the Count von Count on it. This wasn’t random destruction. It was intentional, tied to his deep interest.
     
    https://birdmail.s3.amazonaws.com/images/1628/20250921065457thumbnail.jpg
     
    Two very different moments in one day, but the same lesson: slow down and look closer. Not everything needs to be documented. Not every mess is just a mess. Sometimes what feels like an inconvenience or a loss is actually insight, or a gift, if we’re paying attention. Mindfulness doesn't always have to be scheduled, or a deliberate activity. (but if you need ideas, I got 'em)
    Mindfulness isn’t about perfect calm. It’s about choosing presence over autopilot. Whether it’s a rare woodpecker or torn-up books, the reminder is the same: notice the details, and they’ll often tell you more than the noise ever will.
    I wish you all the best of weeks....and I hope you are able to take a deep breath and notice what's around you.
    LL
     
    *Please note: the posts here that are in the "Sunday Night Emails" category are just that--previous emails sent out on a Sunday night. The dates/times/content may not match up with present day events because it was sent out a while ago.
  8. Lisa Lightner

    The shortcut that isn’t worth it.

    By Lisa Lightner,


    Sunday Night Emails
    Like a lot of people, yes—I’ve tested AI to see if it could lighten my workload.
    Every time, I’ve ended up disappointed. In the 15 years since I started, my work has shifted from “just a blog” to a full-scale online business that I mostly run alone. The pressure is real, and shortcuts are tempting.
    I tried using AI for blog posts... it gave wrong info, clunky phrasing, not my voice, and hours of editing. No time saved.
     
    I tried it for emails and social posts, fine at first, until you realize everything starts sounding the same. Same cadence, same buzzwords, same overused emojis. Once you notice it, you can’t unsee it.
     
     
    Still determined, I asked it to analyze my Facebook ads. It walked me through downloading reports, which I did, then spit out two paragraphs of “Some ads worked and some didn’t.” #NotHelpful.
     
    When I pushed for specifics, it gave me data that was just plain inaccurate. Finally, it listed four ads to kill or duplicate, complete with headlines. Except those ads didn’t even exist in my account. I wasted a Thursday night and still didn’t have answers.
    When I told my husband the story, his first response was: “Why would you even do that? You have no idea what personal data you just fed it.” Good point.
     
    Then there’s the bigger picture: AI runs on massive data centers that use staggering amounts of water and electricity. Every time a person does a "chatgpt session" it depletes our planet of 1-2 liters of drinkable water. The environmental reasons alone are why I've vowed not to use it until they get that part figured out.
    Here’s what all that taught me: there are no shortcuts. The only people insisting “AI is the future” are usually selling AI or AI-related products.
    And that brings me to IEPs.
    If AI can’t even summarize my ad report correctly, how could we possibly trust it with something as nuanced, high-stakes, and deeply human as an IEP? IEPs are about children, real kids with real struggles and real futures. They require judgment, empathy, and context. “Close enough” isn’t good enough. And beyond that, putting student info into AI is a privacy nightmare waiting to happen.
    Being a teacher right now is…hard. But even if I were looking to change jobs or nearing retirement, I wouldn’t train AI to do my work for me. That’s the fastest way to be replaced. What you do matters. Your instincts, your ability to connect with a child, your presence in the room....none of that can be replicated by an algorithm.
    That doesn’t mean you have to drown under the workload. Systems, not shortcuts, are what save time. Templates, trackers, and repeatable processes won’t replace you; they support you. They give you space back in your day without undermining your expertise or value.
    I was reminded of this myself last weekend. I bought a little $27 course called The Organized Blogger from a creator I trust. I spent a Saturday setting up the systems she taught and my workload already feels lighter. Embarrassing to admit, but I’ve been at this since 2008 without any real systems, just scattered notebooks and checklists and planners from Aldi.
    Sometimes, taking a step back to put a structure in place is what lets you move forward with less stress and more impact.
    Enjoy the rest of your evening,
    Lisa
     
    *Please note: the posts here that are in the "Sunday Night Emails" category are just that--previous emails sent out on a Sunday night. The dates/times/content may not match up with present day events because it was sent out a while ago.
  9. Lisa Lightner

    Milestones.

    By Lisa Lightner,


    Sunday Night Emails
    Facebook reminded me that ten years ago this week, Kevin had his first seizure. With his genetic condition, we knew it was a strong possibility, but woke up grateful each day that it hadn't happened. Yet.
    It was summer, just like now. We were headed into what should’ve been a lazy, sunny week, but instead, our world cracked open and never quite sealed back the same way.
    I can tell you where I was standing. I can still hear the silence that follows a seizure—that eerie quiet where time seems to suspend itself while your brain scrambles to catch up to what just happened.
    It was just the beginning. And I’ve spent the last ten years learning how to walk that path, even when it twists unexpectedly, even when the ground disappears under my feet.
    The milestones hit differently now. While many families celebrate first steps, first words, or first jobs—ours have included EEGs, med changes, and hard-won moments of calm. We’ve learned to measure progress in breaths taken, in school days completed without a call from the nurse. Retractable epilepsy and LGS means regression--unavoidable regression unless you control the seizures. And, unfortunately for Kevin, we're just waiting for the science to catch up to him.
    I won’t sugarcoat it—there’s grief. There’s grief for what could’ve been, for the version of childhood that wasn’t ours. But there’s also gratitude. For the nurses who know us by name. For the teachers who listen. For every quiet moment that didn’t end in rescue meds and canceled plans.
    And there’s strength. Kevin’s, mostly. But also mine. I didn’t know I had this in me. I didn’t know I could fight so hard, advocate so fiercely, or sit up night after night researching meds and school accommodations like it was my job—because, well, it became my job.
    Ten years ago, I didn’t know any of this. I was just a mom watching her child on the floor, unable to do anything but whisper “please, please, please” into the chaos.
    Today, I know better. I know what to ask for. I know what to push for. I know the loopholes, the workarounds.
    If you’re newer to this journey—if your child’s first seizure was last week or last year—I want you to know: you’re not alone. You will find your footing, even if it doesn’t feel like it now. The grief might always be there, but so will the community, the resources, and the resilience you didn’t know you had.
    We’re ten years in. And while I’d give anything to change that first moment, I wouldn’t trade the strength it’s uncovered in both of us.
    Side note--One of my few parenting regrets regarding epilepsy is this--For years, doctors would ask us "are you seeing any infantile spasms?" and I'd always say no. Truth is, I didn't know what an infantile spasm was. I heard the word spasm and just assumed he wasn't having them. Then one day, the Brain Recovery Project shared a video of infantile spasms. Oh. If your child is at risk for epilepsy, please educate yourself on allllll the different kinds of seizures, including infantile spasms. Turns out "that dark day" in July was not his first--we just didn't know what we were looking at. Read: ESES, Status Epilepticus, and Other Things I Wish I Knew about Epilepsy.
    Thanks for being here—for reading, for sharing, for walking this path with me.
    —Lisa
     
    *Please note: the posts here that are in the "Sunday Night Emails" category are just that--previous emails sent out on a Sunday night. The dates/times/content may not match up with present day events because it was sent out a while ago.
  10. Lisa Lightner

    Competitors? Or colleagues?

    By Lisa Lightner,


    Sunday Night Emails
    For obvious reasons, I follow a lot of education, disability and special ed related stuff on social media.
    This one post still has me thinking about it, and I saw it like 2 weeks ago. I'm not personally criticizing anyone--we're all entitled to our opinions. And, our world view is our world view, based on what we've experienced.
    But clearly my advocacy journey has been quite different than hers.
    I offer advocate training. On Thursdays during the school year, we Zoom at 2:00. Sometimes I bring in an attorney or expert to do some training. Other times it's just chatting--bouncing ideas around, troubleshooting issues and problems we're having with clients.
    I had no idea when I started this--but I've been told dozens of times it's the best part of the training and why a lot of advocates sign up. Most of us work from home, alone, and it is a lonely job at times. I *think* I'm the advocate in the group who has the most years of experience, but I'm not positive. But even doing this for 15 years, I still have questions and ideas I need to hash out with colleagues. That's right--I said colleagues.
    These advocates are all over the country--CT, CO, CA, FL, MI, DE, MD and many other states. I still consider these people my "colleagues."
    So anyway--back to that social media post. It was advertising a free PDF or webinar or something....to help advocates "discover who their competitors are." Something like that. The vibe was advocates competing with other advocates, for clients.
    There are something like 8 million kids with IEPs in this country. The largest caseload I've ever had at once was 18 kids. And by caseload--I mean their current situation was active with emails, evals, meetings and stuff. Not just on the back burner waiting for another meeting. Very active situations--and honestly--18 kids almost broke me. When you have 18 families and 18 schools to communicate with, 18 IEPs to do a record review and research options.... honestly, sometimes I'm surprised that I'm still an advocate after that time period.
    18 kids is 0.000225% of 8 million. And it was more than I could handle.
    There are enough kids to go around--there is enough need to go around, that we don't need to be thinking of each other as competitors. Any mental energy I'm using to think about how I can "beat" you in the business world, or compete against you....is mental energy I'm not using on your child's situation.
    There’s more than enough work to go around, and collaboration helps us all serve families better. Wasting energy on comparison or imaginary turf wars takes away from what really matters: empowering parents and improving outcomes for kids.
    I don’t compete against other advocates, and I don’t compete against schools either. Competition in advocacy is a failed strategy. That mindset might serve attorneys in due process hearings, but it has no place in everyday advocacy. The need is massive, and there are more families than there are trained advocates to help them. (which is why I started my training program in the first place)
    Wasting time viewing each other, or schools, as the enemy only drains energy from the real mission: supporting families, building/repairing relationships, and getting better outcomes for students. Collaboration, not competition, is how we make lasting change. When advocates support one another, everyone wins—especially the students we’re all here for.
    Rest, but don't quit.
    Lisa
    PS: I will have a lot more info on the training coming in August. If you read yesterday's email, you read that I am updating all my products--and the training is included. Info coming soon.
     
    *Please note: the posts here that are in the "Sunday Night Emails" category are just that--previous emails sent out on a Sunday night. The dates/times/content may not match up with present day events because it was sent out a while ago.
  11. Lisa Lightner

    Caregiving

    By Lisa Lightner,


    Sunday Night Emails
    Kevin had an appointment in center city recently. Yes, pushing an adult in a wheelchair through Philly when my car said...(checks notes)...104 degrees. Whew!
    Many of his doctors teach and do research. And, he asked us to participate in a study they're doing about disaabled kids who have to transition from pediatric to adult providers. I said yes, of course. Because this? This is exactly where we are. And it’s hard.
    On the drive home (in traffic because the city was teeming with tourists), I had time to think. And it hit me just how long I’ve been doing this. Kevin is my first. I don’t know parenting any other way. It’s always included a side order of caregiving, case management, and explaining his diagnoses to strangers who may or may not be helpful.
    Honestly? I can’t remember what it’s like to just parent.
    And maybe you can relate. Maybe you’re in that space, too, where caregiving has become so automatic, you forget there was ever a time before it.
    Here’s the thing I want to say to all of us: This work we do, this invisible, exhausting, often unrewarded work of managing someone else's complex needs, is not nothing. It’s not just “part of the job.” It’s an entire second job, one that no one trains you for.
    But here we are. Still showing up. Still advocating. Still sweating (literally and metaphorically).
    So maybe the lesson in all this traffic and sweat and research study participation is this: just because something has become your “normal,” doesn’t mean it’s not extraordinary. You are doing extraordinary things.
    Take a moment to notice that. And then, go pour yourself a cold drink. Preferably indoors.
    Related: The Extraordinary Burden of IEPs on Moms.
    Rest, but don't quit.
    LL
     
    *Please note: the posts here that are in the "Sunday Night Emails" category are just that--previous emails sent out on a Sunday night. The dates/times/content may not match up with present day events because it was sent out a while ago.
  12. Lisa Lightner

    Yes, it matters.

    By Lisa Lightner,


    Sunday Night Emails
    Last week I was supposed to go to this "thing" out in Gettysburg, for two days. It was part conference/part work session, a statewide thing run by our state Bureau of Special Ed. Since PA had the PARC decree 3 years before IDEA existed, we had "IEPs" and special ed, and we have these parent-led groups called Local Task Forces.
    I've written about them on my site before, because they're a fantastic idea, but they have this clunky name that is unappealing. Anyway, I am chairing the one for my county this coming school year, so all the people involved statewide were gathered to try and improve them going forward.
    But, when you have a child like mine, with complex medical needs, a sitter is not always so easy to find. Especially the first week of July. So, it didn't work out for me to go.
    Sometimes, though, the world works in mysterious ways. Right after Congress passed that horrible bill, Speaker Johnson sent everyone home. They were actually supposed to be in session but he canceled it. My Congresswoman was back home in our district (as I assume most were) and they reached out and asked if I'd like to meet with her. This was Tuesday night, asking about Wedesnday. Had I been in Gettysburg, that wouldn't have happened.
    Anyway, I called off Kevin's van and his nurses for Wednesday, and we went.
    https://birdmail.s3.amazonaws.com/images/1628/20250713024040518282230_10214286469511101_2192762172439067655_n.jpg
    Lisa Lightner, Kevin Lightner and Representative Chrissy Houlihan (D-PA)
     
    We got to chat for about half an hour. Kevin gave her an up close and personal glimpse into what it's like to go out with someone who is profoundly autistic. He took off his shoes shortly after we got there. He threw the few things that I had brought for him, that yes, were "highly preferred" items just hours before. He hit me once while I was talking. At one point, he bolted up out of his wheelchair, ran across the room and tried to climb a set of stacked chairs (I stopped him of course). Hooray for scattered skill sets???
    Despite all that, we had a meaningful conversation and she got a look at some of PA's neediest citizens, and why these Medicaid cuts will be devastating to those of us who rely on HCBS services, in particular.
    I didn't had hope for change--the votes are over, the bill has been signed. We chatted about upcoming elections, and my hope that is what will facilitate change.
    But here's an interesting tidbit: At one point, I said to her, "I just don't understand how some Reps, like Speaker Johnson, can vote yes for this bill, when over half of his district relies on Medicaid."
    She said she is surprised too. But here's the interesting part--she told me that she often asks her conservative counterparts, and they are telling her that they don't hear from their constituents.
    Are they being truthful when they tell her this? I think some of them are. I'm genuinely surprised at how many people are too intimidated to call their people (reminder: they work for US, not the other way around). I've posted many calls to action on my page, only to see comments like "oh, I live in so-and-so's district, waste of time" or "I live in a deep red district, it won't matter."
    I'm here to tell you: IT MATTERS. Studies show elected officials pay attention to calls and letters from their own district—even in “safe” seats. Your calls are logged, tracked, and lumped into a daily tally staffers relay to the member.
    They work for us, even if it doesn't always feel that way. Step out of your comfort zone. Make time. None of us is too busy for a 5 minute phone call. Even better: If you live near one of your rep's district offices, stop in. Tell them that you're either disappointed in their vote, or thank them for a recent vote.
    There's a lot more going on than this bill. There's the $7 billion he's witholding from states, that Congress already approved for education. There's the Department of Labor thing-- no longer required to hire disabled people.
    Stay tuned, I'll have more on these issues, as fast as my fingers can type.
    In the meantime, you can check here for the latest information. I have to redo and update a lot of previous posts, but will still be doing our "Take Action Tuesday" items.
    Rest, but don't quit.
    LL
     
    *Please note: the posts here that are in the "Sunday Night Emails" category are just that--previous emails sent out on a Sunday night. The dates/times/content may not match up with present day events because it was sent out a while ago.
     
  13. Lisa Lightner

    Well, you hanging in there?

    By Lisa Lightner,


    Sunday Night Emails
    How's everyone doing? Whether this past week (and next) was vacation, time off, ESY or just business as usual, I hope you were able to find time for yourself.
    For those of you who have been around me for a while, maybe you remember back in the winter when it was first announced that the US Dept of Ed was being dismantled. First, it was shock. Then, within about 24 hours or so, I was on social media and email, saying "oh hell no, fucking bring it!"
    I still stand by those statements, because I believe with 100% of my heart that going against special needs moms and teachers, as a unit, is one of the biggest mistakes anyone can make.
    Still, I'd be lying if I said I felt that same fire in my belly regarding the BBB that passed on Thursday.
    Regardless of what people want to believe, if implemented, disabled people will die. In droves. I guess that's why I don't feel the same energy--maybe because the stakes are higher now? I mean, if the ED dismantles, will people die? Probably not.
    If rural hospitals close, disabled people don't have food, care, support....will they die? Yes, they will. And our country let it happen in the 60s, 80s, 90s and the pandemic, so don't kid yourself "that'll never happen." Unfortunately the USA has a long history of letting marginalized people die (which is why they don't want our kids to learn the real history, but I digress).
    Anyway, my point is....as a special needs parent, mom, advocate and community leader in this space, how do we get out of this place of despair and fear?
    A mantra that I've said 1000 times: Focus on what we can control.
    I cannot control how Congress votes. I can (and do) call my legislators regularly, and I vote in every election, but ultimately how they vote is up to them.
    I can control how I show up for my kid. I can control how I advocate, how I support others, and how I use my voice. I can control what I teach my community and what tools I share with you.
    So that’s what I’m going to do. I’m going to double down on helping you become the strongest, savviest IEP parent or public school teacher you can be. Because while they’re out there playing games with our lives and our kids’ futures, we’re over here preparing, learning, and fighting smarter.
    This week, I’m going to share more free tools, updated guides, and some ways you can take action—at school, in your community, and yes, even in D.C. when the time is right.
    We are not powerless.
    And when special needs parents and educators get organized, focused, and loud? That’s when the real change happens. We’ve got work to do.
    Lastly, I put these thoughts, and one of my favorite photos of me and my boys, RIGHT HERE. Please share with anyone who needs a little direction these days, a virtual hug or motivation. We've overcome so much--as the saying goes, I didn't come this far only to come this far.
    Rest, but don't quit.
    LL
     
    *Please note: the posts here that are in the "Sunday Night Emails" category are just that--previous emails sent out on a Sunday night. The dates/times/content may not match up with present day events because it was sent out a while ago.
  14. Lisa Lightner

    Today was pretty scary.

    By Lisa Lightner,


    Sunday Night Emails
    Today was a really odd day. I mean--spent the day watching high school basketball which is pretty much what I do every weekend.
    But coming home, traffic was a hot mess. And, the whole FIFA thing was letting out in south Philly....and we got caught in this mele and traffic stop on 95 right by the airport. As we're sitting there stopped (yes, stopped on I-95 so the Juventus busses could have the right of way with a police escort), the guy behind me threw a can at the car next to him! (which was filled with young men hanging out the window celebrating)
    I got really nervous because it went downhill fast. Before we knew it, both cars had pulled up around mine (and all the others) and were chasing each other down 95! I saw a few near-miss accidents, then said to my son, "I'm going to slow down a bit and let them get way out ahead of us so I have plenty of stopping time if they kill each other."
    Anyway, the whole incident made me pensive driving home. People are passionate--whether it's sports or politics, people love their "thing." They literally were risking their lives over a soccer game.
    Passion is awesome. It keeps us fired up and in the game. But passion without perspective? That’s when we start missing the signs. There’s a fine line between dedication and delusion. Passion is great—but if you’re not careful, it’ll make you ignore the facts right in front of you, or defend things that probably don't deserve defending.
    And with everything heating up, this kind of self-check is going to be more important than ever. Passion’s great—until it starts to cloud your judgment, or worse, makes you defend the indefensible just because it’s “your side.†That philosophy applies to both sides. 
    We've all done it--seen something we really wish is true, so we believe it's true. Then we share it. Then we find out it's not true. Let's all take a deep breath before we react, and I'm pointing that first finger at myself. 
    Normally at the start of each week, I send out an action item--a legislative item for us to act upon. 
    Not this week. The USA bombing Iran will distract or derail any other conversations to be had. Of course, we can always call about the "big beautiful bill" that will remove health care for millions of Americans. I call or email about that weekly, and probably will again this week. But there's nothing new in the area of health care or education. Except maybe the US Department of Energy trying to abolish 504. 
    Our lobbying is so needed--our kids cannot advocate (much) politically for themselves. They're going to rely on us, and there's a lot of this in our future.
    Make it a part of your routine. I have a Thursday routine that I do for work, and now "calling Congress" is on that list. Every week.
    Take time for yourself. Tune out. Turn off. Watch a movie or read a book. Walk the dog. Stay informed, but at a healthy level. 
    This is a long game.
    All the information here is still current:
    Stepping Up for Disabled Kids: Guide to Changing Special Education Advocacy and Laws in 2025 Stepping Up for Disabled Kids: Legislative Information Rest, but don't quit.
     
    LL
    *Please note: the posts here that are in the "Sunday Night Emails" category are just that--previous emails sent out on a Sunday night. The dates/times/content may not match up with present day events because it was sent out a while ago.
  15. Lisa Lightner

    Those unfortunate anniversaries.

    By Lisa Lightner,


    Special Needs Moms and Wine
    Hi friends,
    I used to keep a section on my site about women and drinking. Especially special needs moms and drinking, because we are at exceptionally high risk of dependency. (high stress life, little to no support) Years ago, some SEO people told me to prune anything “irrelevant” to IEPs and disabilities, so I did. But I held onto those pieces. One of them feels right to reshare now.
    And, there is a "blog" section of the Village, where anyone can share whatever they want--like an online journal. Anonymous or not, up to you. But I'm glad I have a place to put these old posts, because they generated a ton of email from women looking for support.
    We all have anniversary dates in our lives that are not happy ones. One of mine was last week. September 26th is the anniversary of my mom’s death. She drank herself to death at 39—I was only 9. Every year around this time, I find myself thinking about her, my own choices, and the “wine mom” culture so many of us swim in.
    I first wrote the piece over 10 years ago. If I were writing it today, I’d probably tweak a few things. But it’s a snapshot in time, and I want to share it as I wrote it. Some parts may feel uncomfortable, that’s okay. Sit with that.
    READ IT
    In the essay, I talk about:
    Growing up with an alcoholic mom and how that shaped my parenting. Falling into suburban wine culture myself, because it’s everywhere. The anxiety/alcohol link that so many women quietly struggle with. Why I finally chose to step away from drinking. It’s personal, it’s messy, and it’s not about judgment. It’s about honesty. I’m not a counselor, and I don’t play one on the internet, but if you’re questioning your own relationship with alcohol, I encourage you to read women’s voices on the topic. Books like Almost Alcoholic, Quit Like a Woman, and This Naked Mind really resonated with me.
    It’s been years since I stopped, and I can say this much: my health is better, my patience is deeper, and my kids have the mom they deserve. I don’t really miss “my” mom, but I miss having a mom. That loss is what keeps me honest about all this.
    Cheering for you--
    Lisa
    PS: If you're online ordering books, don't forget to order "Your IEP Playbook." Ships in two weeks!
  16. Lisa Lightner

    The Wine Mom Culture

    By Lisa Lightner,


    Special Needs Moms and Wine
    I’m an alcoholic. Well, almost. I am immersed waist-deep in the suburban mom wine culture, that’s for sure. More on that in a bit.
    Actually, I’m not an alcoholic, but my mom was. So much so that she actually drank herself to death when I was 9 and she was 39. Nice, huh?
    So I have a lot, I mean a LOT of baggage when it comes to drinking, parenting, and self-examination. Not wanting history to repeat itself and all that.
    An alcoholic Mom.
    Despite my less than stellar childhood, for decades I gave her a pass on the drinking. She came from a genetic line of alcoholics and “It was the 1970s,” I’d think to myself, “No one was really talking about alcoholism.”
    I mean, after all, the Betty Ford center didn’t open until 1982 (my mom died in 1979). And no one, I mean, no one was talking about women and alcoholism. If my family and neighbors knew, they didn’t talk to each other about it. Or they did in whispers. I figured she was doing the best she could at the time.
    Becoming a Suburban Wine Mom.
    Then I had kids. And like most parents will tell you, having kids completely changes your emotions, your views on life, everything. When I look at my kids and feel that overwhelming love for them, and you just want everything and nothing all at the same time.
    Didn’t she feel that? Wasn’t I good enough? I mean, when I look at my kids, if nothing else, I am constantly reminding myself that I would never subject them to the childhood that I had. Why didn’t my mom want this for me?
    So this is why I supermom. Why I bake cookies and grow a garden and am constantly on the go showing my kids new things and volunteering and being PTO president. (I told you, I have a lot of baggage!) I am always doing whatever I can to not be my mom. Which was passed out drunk at 3:00 when I got home from school. And usually still passed out in the morning so I had to fend for myself a lot. My dad traveled frequently for business and she usually kept it under control when he was around.
    Moms who drink too much.
    But in the midst of all that I was doing, I was drinking. Frequently. Not ever driving or while pregnant or breastfeeding. Not falling down, passing out, vomiting drunk (yes, my mom did that too). But just a glass or two of wine in the evenings. My kids were always fed, clothed and bathed and nurtured. But wine was always a part of my evening routine.
    Am I overthinking it?
    And given my history, I think about it. Too often. I overthink it. I read books, articles, watch tv shows and documentaries. Any data that I can find to reassure me that I am not an alcoholic.
    Several years ago, Elizabeth Vargas came out openly as an alcoholic and has written a book about her struggles. I’ve always liked her so I read the book and watched her on 20/20. But hey, she was always trying to hide her wine. In bathroom cabinets, the classic mom alcoholic. I wasn’t doing that, so that must mean I’m not an alcoholic, right?
    I will add here, that the main takeaway from Vargas’ book and the story is the link between women with anxiety and alcoholism. I struggle with anxiety issues, as did my mom. I did not realize that about half, yes half, of all female alcoholics struggle with anxiety. That was a huge red flag to me, as during the past 2-3 years with Kevin’s seizures and the way this country is headed, my anxiety has gotten worse. And what can I say, wine relaxes me. That’s why people drink it.
    I mean, I never hide my drinking. For suburban moms, it’s a part of the mom culture. You know it is. We joke about it. All the social media memes about it. Funny t-shirts, funny wall plaques for your kitchen, kitschy wine glasses and coffee mugs with funny wine sayings on them, right? Wine jokes and memes are everywhere!
    Wine Moms.
    I mean, as my friend Lindsay pointed out today, as she stops drinking, she will probably be the only woman in her neighborhood who doesn't drink.
    My friend Lindsay, we chat almost daily. Mom stuff, kid stuff, blogging stuff, wine stuff. And during discussions about how we sleep better without wine and such…we decided that we want to stop. Over the years, we have stopped for weeks or months at a time.
    This time felt different. It started with Chrissy Teigen and her public decision to stop drinking. When I read a few of the articles and saw her on TV, her thoughts just really resonated with me. Elizabeth Vargas’ situation did not resonate with me, but Chrissy did. I could identify with her and thought, “Hmm, maybe I’m not an alcoholic, but that doesn’t mean I shouldn’t stop drinking.”
    Then Lindsay suggested I read the book “Almost Alcoholic” which she was reading. That book sealed the deal for me.
    Basically, the premise is this. Just because you’re not a full-blown, physically dependent on alcohol alcoholic, doesn’t mean that you don’t have a problem. How bad is my problem? I don’t know, I’m still self-examining. But the self-tests and questionnaires in the book are enough to give me some red flags.
    I have a strong family history of both anxiety and alcoholism. I remember my grandfather, who was an alcoholic–and his wife, my grandmother used to say, “Oh how I wish that just once he would wake up with a hangover, that might stop him from drinking.” Like him, I infrequently get headaches from wine, and it is socially acceptable for moms like me to drink wine, frequently and lots of it. That’s a dangerous combination for me.
    So I’m stopping. It’s scary. Fact is, I don’t really know how to “mom” without wine. It’s been a part of our household, our holidays, for as long as I can remember.
    But it’s expensive. I’ve gained weight as I am barreling towards age 50 and my metabolism slows down. I need a good sleep. I need to regain and retain patience, extra patience that is required when raising a medically complex child. I want to do better for my children. I want to accomplish more, because when I have wine in the evening, nothing gets done after dinner. What a waste of precious time!
    Mom Wine Marketing.
    Ladies, we are being marketed to! According to the Chicago Tribune, 60% of wine customers are women. And, the alcohol industry has sat up and taken notice of this. So many things are put in place to encourage us to drink more wine.
    Wine sellers advertising during the Super Bowl (50% of Super Bowl watchers are female) Wine becoming more accessible, easier to purchase because moms are busy and want convenience. In stores, you now often will see suggested pairings, so that buying wine at the grocery store will be as natural as buying food. All sorts of glasses, mugs, aprons, framed art, t-shirts, hats, key rings, note pads, refrigerator magnets and other tchotckes all that reinforce the message of, “hey, drinking wine is part of being a mom.” What’s worse, is that as marketing efforts have increased and women are drinking more, bad statistics followed. As reported by the CDC, women and drinking is a growing health concern. Is it a coincidence that these statistics happened when the wine industry started to actively target their campaigns toward women? No.
    This is why I want Moms to reevaluate their wine habits:
    Alcohol-related deaths are twice the amount as any and all other drugs, combined. One recent study found women are now drinking almost as much as men, closing a historically wide gap. Another study found rates of binge drinking increased by 17.5 percent among women between 2005 and 2012, but rose just 4.9 percent among men for that same period. The rate of alcohol-related visits to U.S. emergency rooms spiked by almost 50 percent between 2006 and 2014, especially among women, the government announced in January. From 2000 to 2015, death rates for chronic liver disease and cirrhosis — often associated with alcohol abuse — increased 57 percent for women 45 to 64 years old, and 18 percent for women ages 25-44, the Centers for Disease Control and Prevention reported. Our “giving up alcohol” stories.
    Lindsay is into week 3 of her 30-day sobriety challenge. For me, I think if I look back at the past 20-22 days, I’ve had two glasses of wine in that time. (author's note--this post is from 2016 or 17)
    My head feels clearer. I’m sleeping better. I’m not feeling overwhelmed with morning tasks because I am getting more stuff done in the evenings. I have more patience. I’m reading more, finishing books at a much quicker pace. My skin is clearer.
    It’s back to school time and I have a big social event on Saturday. I likely wouldn’t drink anyway because I’ll have to drive. But still, it’s on my mind as other friends are already talking about how much they plan on drinking.
    But as Lindsay has said, once it’s off the table as an option, it’s not that hard. Sure, some evenings I get the feeling of “I could really go for a glass of wine right now” but then I think of my kids, and all these thoughts in this blog post that are swirling in my head, and the money, and it’s a no-brainer. I kinda regret all the money that my household has spent on wine in the past few years.
    I wanted to get these thoughts out of my head, so here they are. If you are having doubts or concerns or wondering about your own situation, I strongly recommend that you check out the books I’ve recommended.
    Almost Alcoholic points out, just because you don’t meet the DSM 5 criteria for an alcoholic, does not mean that change isn’t needed.
    I needed change, and I’ve found it. I have another friend who also gave up drinking in the past couple of years, and to quote her, “No, I wasn’t an alcoholic, I just decided that I don’t want alcohol to be a part of my life anymore.”
    That pretty much sums it up for me too.
    Author’s Update: Now that I have been sober for the better part of two years, I can’t tell you how much better life is. My health is better. I’ve lost weight and I have more energy, more patience. And, the more I read about the poison that is alcohol, the more I am confident I will spend the rest of my time not drinking it. And, I’ve heard from so many of you who are also on this same journey and feel so much better for doing it. (that update was posted in 2018 or 19)
    To my family: If you are reading this and are disturbed or hurt that I am “airing dirty laundry,” well, too bad. We need to be able to talk about alcoholism. If we could talk about it and not hide it, she might still be alive today. Nothing that I’ve said is untrue, and many families are struggling with it. Doesn’t mean they/we are bad people…and we need to stop treating it that way.
    2025 Addendum: I'm not a mental health or alcoholism counselor and I don't play one on the internet.  But, if you find yourself struggling, please feel free to reach out. I also recommend the following books or podcasts: Quit Like  a Woman, This Naked Mind, Almost Alcoholic, Take a Break. If you are a mom/woman questioning this, re-evaluating and so on, I strongly recommend that you read and listen to things by women. The dynamics between men vs women and alcohol are very different.
    Honestly, it's been so long at this point, I don't really miss "my" mom, but I definitely miss having "a" mom. Because I never really did. I'm sure there were good times, but the traumatic times are what we remember. What an incredible life wasted--gone at 39, acute alcohol poisoning. 
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