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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.

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.

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.

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.

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.

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.

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.

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.

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!

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.

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.

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.

The school, as his in loco parentis, has the obligation to change his diaper. They are not considered "strangers" in this situation. But I would contact your state department of education to see what type of certification and/or training is required for this and make sure the staff member(s) have that. Not changing the diaper of a child who needs his diaper changed would be considered neglect on the part of the school district. Parents cannot be and should not be responsible for this. Because you have expressed concerns over touching his private parts, I think the scenario JSD was perhaps referring to was one in which the changing of the diaper revealed soiled private parts which if not cared for could be considered neglect; i.e., in that case, they can probably touch his private parts without your permission, as the school is the acting parent in this scenario. This isn't meant to be rude - just telling you what the school protocol might in that situation. It isn't a black-and-white answer - it could depend on the circumstances. Again, I would suggest consulting with an attorney, as this site does not provide legal advice. If you have concerns about how this medical need is handled, you should absolutely request an IEP meeting and ask your questions of the team and staff in charge of this. If more specifics need to be written into the IEP or a health plan, ask for those. I think your questions have been addressed to the best of our ability and qualifications. Can the school change his diaper? Yes. Can they touch his private parts? Not unless medical necessity comes into play. If you have further questions, let us know.

I'm in PA & my son ended up with a Spanish teacher who wasn't certified. I'm pretty sure this is OK. They need to be working toward getting certified to do this. Not sure if this is the case with the ELA teacher. If you are finding that a teacher isn't following the IEP, filing a state complaint is an option. What I'd do before I went that route and became "that parent" is to have an IEP meeting. Before the meeting, write out your parent concerns. If teacher X isn't providing extra time and teacher Y isn't reading directions aloud and this is in the IEP, write it out. Send this to the IEP team a week before the meeting. At the IEP meeting, you can request teacher training in how to provide the accommodations in the IEP. (I'm assuming that SDI is being provided by a special ed teacher and that's going OK.) I wouldn't want to meet one on one with a teacher to tell them they need to follow the IEP. That could be done with an email. I'd email the teachers who aren't following the IEP and copy the case manager and principal so they are aware of the situation. Not sure what's going to be the best route to take to get the IEP followed. Sending your parent concerns to the team and the gen ed teachers who aren't with the program might be a strategy. Adding a self-advocacy goal might help your child be able to get the teachers to follow the IEP as well. Lots of options.

That still doesn’t answer my question. If you don’t know the answer that’s fine. But making up scenarios that aren’t relevant, or implying neglect which is absurd and just rude, isn’t helpful.

I know that Wilson Reading is a popular intervention in my area. There's a 'tutor center' near me where their person does Wilson Reading when the issue is dyslexia. Wilson Reading is one of the many O-G based programs that are out there. My thought is: progress. If the teacher is certified in basket weaving and the child is catching up to classmates, whatever they are doing is working and that's the whole purpose of the SDIs in the IEP - PROGRESS! I'm also on the side of the school with intervention timing. When I had looked at the Wilson Reading protocol (this has to be pre-COVID), I remember daily and 40-60 minutes. (I'm thinking the protocol might have changed.) With a 3rd grader, I'm thinking that 90 minutes of SDI seems long. With outside tutoring, I'm pretty sure the sessions aren't this long. With any program, they tend to follow the script so they can say they are doing this with fidelity. If he doesn't need that lesson, I'd be fearful that he'll shutdown during the parts he needs to learn. With monitoring progress in reading, I believe they look at WCM - words correct per minute (per hundred?). So long as they are using the same method to measure progress, you'll see progress if it's there. I do like the idea of data more often. Any program will tend to work for ~80% of students. If this isn't the right program, finding that out and changing your approach should happen sooner & you'll see that with more frequent data collection. With a good Structured Literacy, Tier 1 program, there will still be ~20% of the population who has dyslexia per the Connecticut Longitudinal Study. These are the students who need an IEP (or Tiers 2 or 3 with milder issues). They need more intensive instruction than Tier 1 provides.

I'm pretty sure they can change his diaper if that is needed. No one in the school should be touching his private parts unless it's part of providing care that, if not done, could be looked at as neglect.

I am working with a 3rd grade student at a private school whose Neuropsych showed diagnosed learning disabilities in reading, written expression and mathematics. Despite strong science of reading phonics instructions, we had communicated concern since 1st grade, but the district testing showed no qualifying needs. The family paid for a neuropscyh out of pocket and then the district re-tested this spring. While we have an OG practitioner working 1:1 with 3 of our students through the public district, the practitioner was put in place through the former CSE chair. The new chair/committee is recommending using an elementary SpEd teacher who is certified in the Wilson Reading System. Their initial recommendation was 30 min/5 days/week. We replied that for WRS to be delivered with fidelity, there needed to be a minimum of 2 days of 90 minute sessions (per the Wilson website). They have now offered 45-60 minutes/day to work on all 3 learning disabilities with regular progress monitoring and a program review in 5-8 weeks. While we are grateful for this increase in services, we're concerned about the more generic curriculum vs individualized OG pacing/instruction because this students' deficits are patchy. What type of data would we need to show that progress (improvement or the rate of improvement) with the WRS is insufficient ? Has anyone had a positive experience with the WRS with students with dyslexia?

So you still haven’t answered my question. I just need to know if they can touch his private parts without my permission. I get that you’re all for it, and that’s great. I’m just trying to get my question answered.

Thanks for your reply. Lots of good info there! I did ask the principal that if my son has down syndrome or severe autism, would he have received the same treatment and he said No. The school definitely did not implement the BIP - and yes, it is part of his IEP. I am currently consulting with a sped attorney. The DA was well aware of my son’s multiple disabilities but wasn’t interested in seeing the nine page threat assessment outlining he was (and is not) a threat. He also refused to look at the MDH. We accepted the consent decree bc the other option would not have been positive for him. I have a long list of things I want to do the the IEP and BIP - to include times when he’s “interrogated”. I’ve asked in the past bc I was afraid something like this would happen. My concerns were brushed off - twice. I have not ruled out a state complaint. I’m waiting to see what happens next. Thank you again!

Thank you for your response. I understand schools need to take threats seriously but think better judgement should have been used and the BIP should have been followed. I have consulted with an attorney who exclusively represents special education families and am awaiting a response to an email I recently sent.

This reminds me of a situation that happened a few years ago to someone I know. Her child has Downs Syndrome and didn't want to do a worksheet - this was kindergarten. The child shaped their hand 'inappropriately' and while pointing a finger at the teacher said 'I sh**t you'. This was viewed as a terroristic threat so the school followed district policy. Well, the police got called with how the policy said things had to be done. Their policy was that if there was an incident like this, they needed to have a police officer on the team. And if the police are involved, they make a record of it. The parents were livid that this caused their child to have a record with their local police at age 5. (Your situation is this one times 50.) The school's assessment (MDR) showed that what played out was a manifestation of your child's disability - that's what you wrote. And they want to punish him for this? (I want to see the research/evidenced based study that was done showing this works. What they do in schools should be research/evidenced based. I've looked and I'm not aware you can punish the disability out of anyone.) They didn't follow the BIP, things escalated, and he ended up in handcuffs and detained overnight. Have you filed a complaint with your state dept of ed that the school didn't follow the BIP (which I assume is part of his IEP) and this is how it played out? I'm hoping that the administrators attending the administrative meeting with immediate supervisors have more sense and knowledge of special ed and child pedagogy that they put the SRO & AP in their place. If it doesn't play out like that, you're going to need an attorney. Not sure if you need a criminal lawyer or a special ed lawyer - I'm thinking you need someone with experience in both these areas. Diversion is a great option. With other cases involving diversion, I've seen kids need to stay out of trouble until age 18 or 21 so 6 months seems fair (not sure they took your child's disability into account when they decided this because it sounds like he doesn't have the capacity to understand what he did was wrong). What I feel is needed are changes to the IEP where if he does make an unfounded threat, they don't get the SRO and court involved (because it sounds like he doesn't have the capacity to regulate what he says when escalated). I could see SDI put into his IEP to teach him to say something else when he's escalated and his BIP isn't being followed - but, on the other hand, they really need to follow the BIP/IEP since it should work to prevent this happening again. The state complaint should be something you can do on your own - you shouldn't need a lawyer to help you. If you do need help, every state has a parent group that can assist you with things like this. Not sure where you're located or I'd post the link. They are also someone to reach out to with this situation.

Strangers shouldn't be touching his privates - I agree with you on that. When a student isn't able to be independent with toileting, it's on the school to care for that student as in loco parentis. Your child is under the care and supervision of the school during school hours. They are not obligated to allow anyone other than school personnel into their buildings. At school, his in loco parentis should be changing him. If he loses a tooth, they should be helping with that. If he needs his shoe tied, they should deal with it. I remember one of the school nurses telling me about a girl who needed to be catheterized in order to pee. It was the school nurse who did this - not a stranger. This was at a middle school and they had a male nurse - one nurse for the whole school. There are times when schools are put into lockdown and no one is allowed to enter. What happens if he needs a change then? To not change him would be neglect. They are going to handle changes the same way you would and it would be appropriate because they are in loco parentis - they aren't strangers. If they are not handing this in a dignified manner, call them out - they should be.

I would call the Pennsylvania Department of Education and ask if this is ok. Many requirements for teachers have been modified to address the staffing shortage. But regardless if this is ok or not, the IEP MUST be followed. There is no excuse for not doing this. I would first go over all the accommodations with your son to see which ones are being followed (and if not being followed, does he still need them?). Then I would gather information as to how this failure to follow the IEP is affecting your son in the educational environment - is he getting low grades? is he struggling to turn in assignments, keep up with homework, etc.? is he frustrated or does he "hate" school? are his standardized test scores going down? Then request an IEP meeting (ask that every teacher attend, but you probably won't get that) and ask how accommodations are being implemented and outline the struggles he is having based on not following the IEP. For teachers who are not at the meeting, ask them in an email or phone call or informal meeting (during the latter two taking meticulous notes and following up with an email as to what was said). If you continue to have issues with implementation of the IEP, contact the director of special education. Next step would be filing a state complaint.