Lisa Lightner

You’re not off base at all. In fact, your instincts here are exactly what any evaluator, advocate, or data-driven teacher would say: if the grades aren’t accurate, the data can’t be used to make instructional decisions. A few points you can include in your reply to the teacher or in the IEP meeting: 1. It’s not about “passing vs failing”it’s about skill acquisition. A 65% and an 8% may both be technically failing, but they tell very different stories about your daughter’s decoding, comprehension, writing, task completion, and general access to the curriculum. Inflated grades erase the picture you need in order to support her. 2. This practice undermines IEP progress monitoring. IEP teams rely on accurate performance data to determine present levels, goal mastery, and whether accommodations and services are effective. If the numbers aren’t real, the team loses the ability to make informed decisions—and your outside evaluation won’t match the school data. 3. You can acknowledge the teacher’s intent while still correcting the issue. Most teachers who do this are trying to prevent a student from being crushed by a failing grade or are following a building-level practice they’ve been told is “helpful.” A script you can use: “I appreciate that you’re trying to support her emotionally and academically. My concern is that for IEP purposes esp with new evaluation results coming, we need accurate data so we can pinpoint where she’s struggling. Even if the grade is low, it helps us understand what level of support is actually needed.” 4. You can request a team discussion without making it personal. This is a data-collection and IEP-implementation issue, not a teacher-blaming issue. You can say: “Could we clarify as a team how grades should reflect actual performance? I want to make sure we’re collecting authentic data so we can align her services to her needs.” 5. What the teacher is doing isn’t best practice. Grade inflation for students with disabilities is incredibly common, but it’s also one of the top reasons students look “fine on paper” while falling further behind. If her real performance is an 8%, it’s a sign that the current IEP isn't addressing the gap, not a sign that her grades need softening. 6. The timing is actually ideal. You have an outside assessment ready to go. This discrepancy between “reported grades” and “actual ability” is exactly the kind of evidence that strengthens your case for stronger supports, services, and maybe even modified curriculum or more direct instruction. I have a ton more information about this-- https://adayinourshoes.com/goals-grades-iep-special-education/ https://adayinourshoes.com/adverse-educational-impact/ https://adayinourshoes.com/child-does-not-qualify-for-an-iep/

Reader question: My 6th grader has an established IEP that I'm not satisfied with. We've actually had an outside educational assessment completed and I meet for that feedback appointment this Friday. I've just realized that her ELA teacher is making a note of my daughter's actual grade (which is sometimes an 8%..) but the teacher is loading 65% as her grade. When I asked her about it, she shared, "The speech bubble is the actual grade she made on the assignments. I went back on Monday and changed her 60's and put them in as a 65 instead, because a 65 and 44 are both failing, but the 65 is easier to bring up. I don't mind doing this to help her since she is completing 6th grade level work, while her reading level is below grade level." I'm really uncomfortable with this because it is not accurate data collection. An 8% is very far away from a 65% in terms of us thinking about her understanding and level of support needed. Am I off base here? I want to maintain a good relationship with this teacher, who has attended my daughter's IEP meetings in the past. But I feel like putting in inaccurate scores is data collection 101..

The bills you’re describing in Wisconsin aren’t happening in a vacuum. What you’re seeing—vague “disruptive behavior” language, broadened removal authority, mandatory parental notifications, and zero disability protections—is part of a coordinated national movement. And yes, it’s absolutely tied to the larger “law and order,” anti-public-schools, anti-inclusion policy wave we’ve been watching for years. Here’s what’s behind it, and what’s driving the similarity of these bills across states. These bills match the pattern of ALEC-style model legislation While ALEC hasn’t released one single widely publicized discipline “model bill,” the structure of AB613/AB614 follows the playbook: Broad definitions of “disruption” Increased teacher authority to remove students A required re-entry condition (often disguised as a “BIP requirement”) Mandatory reporting requirements framed as “parental rights” Exemptions for private/voucher schools Zero mention of IDEA protections That combination is too consistent to be random. In multiple states, lawmakers have referred to “model discipline legislation” they are “adapting,” which is usually legislative shorthand for ALEC, the Heritage Foundation, or a state-level conservative policy shop providing the template. Heritage’s Project 2025 absolutely includes a discipline agenda Project 2025 has an explicit goal of: Increasing “school safety authority” Weakening federal civil rights oversight Removing “barriers” to discipline Reducing “overreach” of IDEA, Section 504, and OCR Shifting control from federal protections to state-level discretion That “re-entry requirement” you noticed? It’s completely aligned with the Heritage position that districts should be able to exclude students who require behavior supports without worrying about IDEA compliance. So yes this is connected. AEI’s Conservative Education Reform Network (CERN) is part of this ecosystem Daniel Buck is not random.CERN regularly pushes: Zero-tolerance discipline “Order and culture” frameworks Reduced “behavioral accommodation expectations” for teachers Opposition to restorative practices Narratives about inclusion harming “classroom learning” CERN content is often directly cited in state-level hearings in TX, FL, AL, and now WI. AEI isn’t the originator, but it is the megaphone. Voucher and privatization lobbies are heavily involved One major red flag you already noted: These bills never apply to voucher or private schools.!!!!!!! That’s intentional. The architecture is: Make public schools seem chaotic and unsafe Strip public schools of tools and funding Increase public frustration Expand vouchers as the “solution” Funnel tax dollars into private schools not bound by civil rights law Reduce overall public investment in IDEA enforcement The discipline bills are part of the destabilization strategy. Disability and civil rights organizations are waving massive red flags DRCs, COPAA, NDRN, and state disability councils have all flagged identical concerns across multiple states: Increased removals of disabled students Disproportionate removal of Black and brown students Clear FERPA violations disguised as “parental rights” IDEA re-entry restrictions that directly violate federal law Lack of funding for mandated interventions Backdoor pathways to removing students who require support Every state sees the same pattern because the bills are drawing from the same origin sources. What’s different about Wisconsin’s versions? From what you described, WI’s bills have two particularly extreme elements: Same-day classroom-wide notification for any removal or emergency drill This absolutely chills inclusion. Peers and parents will deduce exactly who was removed. Requiring a BIP for re-entry Schools are not legally permitted to condition access to FAPE on completion of a Behavior Intervention Plan. That’s why you felt in your gut that this is an IDEA violation—it is. The broader context: gutting OSEP and federal oversight The timing is coordinated: Federal moves to weaken OSEP State bills weakening discipline protections Simultaneous voucher expansion Increased attacks on inclusion More rhetoric about “dangerous” or “disruptive” students All of these pieces fit together into the long-term strategy of: Shift control to states → strip oversight → reframe disability supports as burdens → expand privatization. You’re not imagining the pattern. The one piece of good news in WI Your Democratic governor’s veto is a meaningful barrier right now. But the presence of these bills indicates where the agenda is headed long-term. Your response (writing legislators, pushing for funding, naming the FERPA and IDEA violations, and coordinating with WI BPDD) is exactly what stops these bills from passing quietly under the radar. And your instincts are correct: this is bigger than Wisconsin. This is part of a national movement to rewrite discipline and inclusion norms in public education.

Posting with permission from email: Good afternoon Lisa! I've been a longtime follower in your FB A Day In Our Shoes group and really appreciate your posts and perspectives. I'm also quite active in state disability advocacy. I live in WI, am very active with our Board for People w/Developmental Disabilities (WI BPDD) and completed their Partners In Policy-making training about 10 years ago. The reason I'm reaching out today is because WI Republicans have introduced a couple of very alarming education related bills re discipline and parental rights/notification this week. I sat thru a livestream of most of the discussion and public testimony at an education committee public hearing yesterday. I'll give you a few WI specific details, but I did a quick search and see that TX passed a similar bill and FL and AL are also discussing similar sounding bills - most call it a "Teachers Bill of Rights" and the conservatives are stressing the need to bring "Law and Order" back into schools, to "control" student behavior better, to stop "disruptive" students from interfering with the learning for other students. Are you aware of any bill mills or conservative groups that are churning out these types of school discipline bills? I'm wondering if ALEC or voucher lobby or Project 2025 is pushing this. Seems like some similar language and similar harshly punitive measures are included regardless of state. WI may have worse reporting/notification requirements than other states. One of the most ardent supporters, and disturbing testimonies, was from a young man named Daniel Buck who works at AEI in the Conservative Education Reform Network (CERN). I know AEI is a right-wing, partisan org but I'm not familiar w/CERN. In WI the bills (AB613 and AB614) use vague language and subjective judgment to expand the definition of "disruptive" behavior that would qualify for a teacher removing a student from the class. Includes the student being too "boisterous," too loud, "interrupting" instructional time, not complying with classroom rules, along with safety concerns or actual violence. Then would require a BIP be in place before the student could return to the same classroom (conservatives called it the "re-entry requirement" which frankly sounds like an IDEA violation.) Additionally, any time a student is removed from a classroom for any reason (disruptive student or even emergency drills) the principal is mandated to send an email notification to every parent in the classroom before 5 pm on the *same day* as the incident. The bill authors claim that since the disruptive student won't be specifically named, that these notifications do not breech student privacy rights. (Of course all advocates, and indeed the WI Disability Rights office, are calling out this blatant FERPA violation.) On top of that, none of the state's voucher schools or private schools are included in mandates of these bills. And students with disabilities are not exempted or protected in any way in this bill. And of course this is an unfunded mandate. It was immediately clear from reading thru the first time that this makes it easier for teachers to exclude students with disabilities and will jeopardize all gains re inclusive public schools. The likely ostracizing of students w/disabilities, students of color and their families is very concerning. And on top of the federal govt gutting OSEP feels very discouraging. I'm not freaking out because we have a Democratic Governor who supports public education and even if the bills pass, he will veto them. And I'm writing to my state representatives to advocate for increased funding, smaller class size, additional resources and prof devt, more staffing, more support services, etc. I'm also contacting my Federal legislators to protect IDEA/Dept of Ed. Just wondering what you are seeing/hearing about "safety" or "teacher rights" bills in different states. Part 2: You are welcome to use the info I shared as a lead for your own article/post and fine to leave in references to WI. Wisconsinites didn't get very much lead time, but it was a publicly noticed hearing for our state Assembly Committee on Education and a recording is available by the non-profit media organization called WisEye. (If you'd like a link to the recording, just let me know. But I also understand you may be more interested in broad strokes rather than a deep dive into a specific state's proposals.) I've put a pin in CERN to go back and get more info later. I'm interested in getting a bit more background on Daniel Buck, the AEI and CERN guy. He seems quite young but claims to have been a classroom teacher (English at middle school level), an Administrator (maybe Asst Principal at an elite or private charter) and now an "expert" on discipline in k-12 public schools - which seems like a rather fast career arc and reminds me of Michelle Rhee (who was also very connected/funded by voucher special interests.) I also thought it odd that when I was doing a quick search re other states, Daniel Buck's name kept coming up. He not only had an op-ed specific to these WI discipline bills in our local Milw Journal-Sentinel newspaper, but he had published the same post in a bunch of private college student newspapers (USC, Duke, Texas A&M and Clemson were high up in search results, there may have been others.) And he also published the same post in a handful of professional sports teams "news" sites for fans (NOLA's Saints, Baltimore Ravens, etc. all under a USA Today banner.) Why would a student in NC or a football fan in LA care about a state bill in WI? His highlighted subhead was "I hope partisan politics doesn’t prevent legislators from scoring these obvious wins for WI schools." But he's the one supporting partisan politics and clearly a paid private lobbyist. And these bills are a tremendous loss for students with disabilities and students of color. Also, FWIW, there is another WI player that is huge in attacking public schools. That would be WI Inst for Law and Liberty (WILL). They've been at it for over a decade but have grown their staff and are wickedly well funded. They frequently threaten or do sue local school districts, push the toxic "parent rights" bills, and partnered with some WI chapters of Moms for Liberty. WILL seems to be a mush of private voucher lobbyists, libertarians and tea-party conservatives. Primary donor is the Bradley Fndn, but similar to Koch network, they are enmeshed with many other far-right groups. Anyway, I appreciate your interest and look forward to reading your article.

You are doing the work of three systems—parent, advocate, and tutor—because the school system keeps failing both of your girls. And you’re right: time really is the most critical factor for dyslexia intervention. Everything you’ve described (gaslighting, “she’s smart so she doesn’t need help,” Response-to-Intervention purgatory, private interventions doing the heavy lifting) is extremely common in dyslexia cases. Let’s break down your actual questions, because they’re the part you can take action on right now. What happens to an IEP when a child is homeschooled? An IEP only applies to public school enrollment. If you withdraw to homeschool: The IEP becomes inactive, not “closed” or “deleted.” The district still has Child Find obligations, meaning they must evaluate a homeschooled child if you request it. You do not receive special education services automatically while homeschooling. Some states allow limited services through “equitable services” plans—look at your state's regs to find what is available to you So: If you homeschool, the IEP stops being implemented. You become the service provider. You essentially are waiving your right to FAPE. That doesn’t mean you’re shut out of supports forever—you can always re-enroll later and the district must evaluate again. Can your eldest still participate in "this" Club and orchestra while homeschooling? This part varies by state and by district policy. In Missouri: The state does not require districts to allow homeschooled students to participate in extracurriculars. Many districts do allow partial participation (especially band/orchestra), but it’s local policy, not a right. You would need to check your district’s board policy under “homeschool participation” or “nonpublic student activities.” If the district says no, you’d look at: Community orchestras Youth music programs at local colleges Church or community clubs Online or homeschool academic competitions 4-H, Scouts, or STEAM clubs Dyslexia-friendly book clubs or enrichment groups Middle-school extracurriculars can be rebuilt, but you’ll want clarity before you make any decisions. Why your youngest “doesn’t qualify” — even with an outside dyslexia diagnosis This is another common pattern: Schools over-rely on: High IQ Good grades Processing speed “She’s not failing” “She’s doing well enough” But IDEA does not require a child to fail to qualify. It requires: A disability AND an educational impact The IEE showing dyslexia is educational impact. Poor oral reading fluency is educational impact. Needing 2–3 hours of private tutoring weekly is educational impact. Schools simply don’t want to open IEPs for kids who appear “bright,” because they mistakenly assume dyslexia can be outsmarted. You are not imagining the gaslighting. You are not imagining the delays. And you are not imagining the difference private tutoring makes—because fidelity and intensity matter, and that’s exactly what schools often avoid providing. If you homeschool now, can you return later with an IEP? Yes. If you re-enroll: You immediately request evaluations The district must respond within legal timelines Your previous IEP and IEEs still matter as data They cannot require you to “try RTI again” before evaluating You are not locked out for life. Is homeschooling the only way to get them what they need? Not necessarily, but many dyslexia families choose it because: They’re already doing the tutoring They’re already providing the curriculum They’re already filling all the gaps They’re exhausted from fighting for basic literacy Your youngest is getting more structured literacy at home and with private tutors than most districts ever provide. Your eldest is thriving academically because of what you arranged outside of school—not because the school delivered structured intervention consistently. Homeschooling may reduce the daily battles, but you’d be trading those battles for the responsibility of designing their academic roadmap. Big picture: what you’re experiencing is a systemic failure, not a parenting failure This is the dyslexia cycle many families fall into: School delays evaluation School minimizes results Child falls years behind Parents privately tutor School uses the private progress to deny services Child internalizes “I’m not smart enough” Parents become the only consistent intervention provider Eventually the whole system feels unsustainable You’re not wrong to consider homeschooling. You’re also not wrong to keep pushing the district. Either path is valid; the right choice is the one that protects your girls’ mental health, self-esteem, and access to structured literacy.

I have two daughters, ages 11 (dyslexia and ADHD) and 7 (mild dyslexia; attention issues but not considered ADHD). My eldest has an IEP (obtained in late 3rd- Spring 2023/early 4th grade Fall 2023; private diagnosis of dyslexia and ADHD was done outside of school by Oct 2023-Jan 2024 to have a specific name for her struggles). When I switched from the choice school she was attending at the time of her initial IEP (who seemed to have a good reputation on paper), back to our district school, she was reading approximately 3-4 grades below level. I switched b/c the school team was dragging their feet about helping her (Just read to her/Response to Intervention purgatory for a couple years before finally evaluating her etc., then , using weak IEP goals and interventions, while simultaneously telling me how talented and skilled they were, and 'that she was being educated by the best...she's smart, maybe she'll catch up someday...etc.' I also noticed that my youngest (who was in kindergarten at the original school) was starting to struggle a bit with reading as well, and didn't want to face a similar process with her at the choice school. I enlisted the help of a mom who was getting training in Orton Gillingham the summer of the school switch (2024), then placed her in an online private tutoring program, Dyslexia On Demand-CALT tutors; Take Flight Program, by Fall 2024. The private interventions made the most difference. I started seeing progress with her reading improving by the Fall of 2024, even with just the mom helping her in the summer. She's also done really well with the Dyslexia on Demand tutors, and has improved by several grade levels in a year with them (reading at around a 4th grade level; up from K-1st or so when we left the previous school). The original school district (transfer school area), has been slightly more helpful for my eldest ( took temporary services from pro-bono lawyer and advocate), but got her IEP goals straightened out somewhat). I still wrestle with the schools a bit with appropriate programs, intensity, fidelity, etc. but it's a little better than the previous school. Eldest is currently in middle school in Jr Beta Club and orchestra etc., along with her core classes. I have struggled a bit more, however with advocating for my youngest. She is currently in the 2nd grade and I can't get an IEP for her. I had an advocate last year at transfer school (advocate no longer available this year, and I'm back to being gaslight more again this year). In May 2024 before we transferred, I had a CALT do a dyslexia screening which indicated struggle. School evaluated her, and explained away signs of struggle on her testing, and said no IEP needed (Fall/Winter 2024). Had an IEE via the district, which also found struggle, and she received a diagnosis of mild dyslexia and attention issues (Spring of 2025; school didn't meet with me before end of year to discuss it). Fall 2025: School data and evaluations indicate poor oral reading fluency, as well, but the school team said, that because her IQ was above average, high processing speed and grades were good so far, no IEP needed (despite IEE results as well as standardized testing indicating reading struggle). I feel that time is of the essence. I'll do what I can to keep trying to get her an IEP, but I'm also looking into homeschooling. I am getting weary of wrestling to meet my girls' basic needs, being gaslit, delayed, denied, and wasting more precious time for them. I also want to customize their learning experience a bit more, improve their self esteem etc. (They often make comments about not being smart enough, and my eldest also sees a psychologist weekly for support after her experiences at the previous school). Question: What happens to the IEP when one goes the homeschool route? Can my eldest still access the school (name) Club and orchestra if in homeschool? Or would we need to seek community resources for this? I look forward to your thoughts.

This is incredibly frustrating, and what you’re seeing is a combination of federal rules and local interpretation, not a sign that students suddenly stopped needing support. If anything, I've always argued that when a child moves, and loses their "community" and friends etc., ,it should be expected that needs have increased, not decreased. Moving is stressful. Here’s what’s going on: 1. Federal law (IDEA) requires schools to honor an incoming IEP. When a military family transfers mid-year, the new district must provide services comparable to the previous IEP until it conducts its own evaluations and writes a new one. That’s not optional. 2. However, (your state) uses a very tight interpretation of eligibility categories. Some states are more flexible with diagnosing learning disabilities, autism, speech/language needs, or OHI (ADHD/anxiety). A child who qualifies in Colorado or Virginia may not meet Missouri’s criteria. This leads to: Parents arriving with a valid IEP The district “reviewing” it And then determining....sometimes very quickly....that the student “doesn’t qualify” under Missouri’s rules It feels like rejecting the IEP, but technically they are saying the student doesn’t meet state criteria once reevaluated. Know that I have seen this allllll over the place, in both military and non-military families who moved. Military families feel this more intensely because they move so often. Transitions mean repeated reevaluations, and Missouri’s stricter criteria create a pattern where incoming students repeatedly lose eligibility. Teachers often feel helpless watching it happen. You’re not imagining it, and you’re not the only one saying it. This has been raised at state and federal levels because it causes academic and emotional whiplash for kids. What families can do: Bring all outside evaluations with them Request Prior Written Notice when eligibility is denied Request an Independent Educational Evaluation (IEE) if they disagree Document educational impact, not just test scores Connect with the installation EFMP office, this is exactly what they’re there for (there are other military resources too) Request stay-put protections when appropriate (during mid-year moves) And no, wanting services doesn’t equal “over-qualifying” students. These children had legally valid IEPs in their previous state. Missouri’s process simply creates a higher barrier. What you’re witnessing is exactly why parent advocates are needed.

Posting from email: Do you know why it is so hard to qualify for an IEP in (redacted)? I have many military parents who transfer to the school I work at, (redacted), with their child who just qualified for an out-of-state IEP. As soon as they transfer into our district, their IEP is rejected. It is the hardest thing for a special education teacher to watch and not be able to do anything.

Schools are required to allow service animals under the ADA, but emotional support animals (ESAs) are different. ESAs are not automatically permitted in K–12 settings, even with a doctor’s note. For a dog to be approved, the key question becomes: Is this the only effective support for the child’s anxiety at school? If other evidence-based supports work, the dog becomes harder to justify. That said, there are pathways families sometimes use when an animal is truly part of a child’s disability-related support. Here’s how to think about it through the IEP/504 lens: The school must first identify the disability-related need.If anxiety is impacting attendance, participation, or ability to access learning, that condition itself should be documented within an IEP or 504 plan. ESAs are generally not recognized as an accommodation under the ADA. That’s why districts often say no, they’re not obligated to allow emotional support animals the way they must allow trained service dogs. BUT you can request an evaluation or 504 meeting and propose this as an accommodation. The team must consider whether: The dog is necessary for the student to access school, and Whether there are other accommodations that would meet the need with fewer logistical barriers. Some districts do approve a dog with strict guidelines (handlers, toileting schedule, training expectations, allergy planning, etc.). Others say no but will offer alternatives like: Dedicated calm-down space Sensory supports Breaks with a staff member Access to a mental-health professional Use of weighted items, fidgets, or regulation tools You do not “certify” an ESA for school. Instead, the school makes a placement/accommodation decision based on disability impact. Outside “certificates” or online ESA letters do not create school obligations. Your state may vary, so you want to double check that to be certain. Because you’re a teacher in the district, it can add an emotional layer. Stick to the process: request a meeting, document the disability-related need, and ask the team to consider the dog as one possible accommodation.

Posting from email: How do we qualify our son's one-year-old dog to become his emotional support dog at school? He has severe anxiety, and when he holds his dog, the anxiety melts away. His pediatrician said she does not know but would support whatever we need to do. We are in (redacted), he attends (redacted) and I teach in the same district.

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.

{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: “Oh, I see all these parents with young kids and I just think, ‘You have no idea what’s in store for you. It gets so much worse.’” 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: “You’ll figure it out. You’ll grow with your child. And it’s not all bad — there’s still joy to be found.” 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.

It’s heartbreaking (and unf not uncommon) for parents to end up in this situation. When a child with an IEP refuses to attend school, the district’s response should never begin and end with truancy. Under IDEA, if a disability is impacting attendance, that’s a special education issue, not simply a discipline or compliance one. Here’s what should be happening instead of fines and warrants: 1. The team should address the “why.” School refusal is almost always rooted in anxiety, mental health, sensory overload, or a lack of appropriate supports. The IEP team needs to determine why your child can’t attend, through evaluations, data, and input from mental health professionals. 2. Attendance concerns should trigger an IEP meeting, not truancy court. When a disability is preventing a student from accessing school, that’s a denial of FAPE. The district has an obligation to consider additional supports, placement changes, or even home/hospital instruction if necessary, not punitive action. 3. Document everything. Keep a written record of your requests for help, your communications about your child’s difficulties, and any documentation showing the disability connection to the attendance issue. This becomes crucial if you need to escalate your concerns. 4. Request an IEP meeting specifically to address “school refusal.” Ask for updated evaluations (including a functional behavioral assessment or mental health evaluation) and for the team to develop a return-to-school plan that includes gradual reintegration, counseling, and accommodations that make attendance more possible. 5. You’re not alone in this. Many parents have faced similar situations where districts turn a complex disability issue into a legal one. The key is reframing the problem: attendance isn’t defiance, it’s a symptom. And IDEA requires schools to address symptoms that interfere with learning.

Posting for a reader: I just want my kid to go to school. We have a school refusal issue. She has an IEP and from my viewpoint. They’re not addressing the IEP because they’re not addressing the school attendance issue just finding me I asked them to go to truancy court and they find me $500. I currently have a warrant out because I refuse to pay it. I asked for their help all they did is add to the difficult situation. I’m already in

Many parents walk out of IEP meetings feeling like they just got hit by a truck, even after spending hours preparing. It’s incredibly frustrating when goals aren’t carried over, or when your child’s AAC isn’t being used consistently or correctly. Those two issues—continuity of supports and AAC implementation—are both critical for meaningful progress. Here are a few action steps you can take: Request written documentation. Ask the team (in writing) to explain why previous goals were changed or not continued. They are required to provide a rationale for any major shift in programming or goals. Request data and training logs. Ask for data showing how the team implemented AAC over the past year: who used it, when, and in what settings. You can also request documentation of staff training on the device. If the team hasn’t been trained, that’s a valid area for corrective action. Call an additional IEP meeting. You have the right to request a meeting at any time, especially if you believe your child isn’t receiving FAPE (a Free Appropriate Public Education). In your request, specify that you’d like to discuss AAC implementation fidelity and consistency with previous goals. Bring evidence. Print examples of what worked in the past. videos, old progress reports, teacher notes, etc. Concrete examples often cut through the “he said/she said” that happens in meetings. Ask for an AAC specialist. If your district has one (or can access one through the IU or assistive tech team), request that they attend the meeting. Consistency in AAC use hinges on staff confidence and training. Consider writing a parent concerns letter. Before the next meeting, write a short statement summarizing your concerns, your child’s current skills, and what you’ve observed at home. Ask that it be attached to the IEP. This ensures your perspective is part of the official record. It’s discouraging to feel like your voice isn’t being heard, but documenting and following up in writing often shifts things from “they said they’d fix it” to actual accountability. I have many resources on adayinourshoes.com to browse and read-- everything from AT and AAC information, goals, ideas to try, as well as a bunch ways to communicate with your team.