Lisa Lightner

I'm glad you brought this up, because as many districts across the country implement these bans, this is coming up often. Yes. And actually, NJ’s new bell-to-bell cell phone rules specifically account for situations like this. The NJDOE guidance says districts must allow exceptions when cellphone/device use is necessary to implement an IEP or 504 Plan or address documented health needs. It even gives examples that include managing anxiety through an app or communicating with a caregiver as part of a student’s plan. So I would not approach this as, “Can Mom please get an exception to the cellphone rule?” I would approach it as: “My child has a documented disability-related need. How are we going to address that need in the IEP?” And I would not write an accommodation that just says “student may use cellphone as needed.” That's too vague and leaves way too much room for interpretation. You know how I feel about vague IEP language. It rarely gets less vague once everyone leaves the meeting. I'd want the team to define the purpose, circumstances and access. Something along these lines: “Student will have access to her personal cellphone when experiencing increased anxiety, emotional dysregulation, or difficulty communicating her needs verbally. She may use the device to communicate with designated support persons, including parent/caregiver and identified school personnel, and/or to type or record thoughts when verbal communication is difficult. Access will be provided without disciplinary consequence when used for these disability-related purposes.” Obviously that needs to be individualized. I would also discuss where the phone will be kept, whether she can access it herself, whether she has to ask first, and what happens if she's too dysregulated to verbally ask for it. Because an accommodation she cannot access when she actually needs it isn't much of an accommodation. I'd put this in the accommodations/supplementary aids and services portion of the IEP. NJ specifically describes that section as the place for individualized supports a student needs. I'd also make sure her Present Levels describe the actual need: what happens when anxiety/OCD symptoms escalate, how they affect her at school, difficulty communicating verbally during those times, how she currently communicates, and what has been effective. The psychiatrist's letter should be provided to the team and considered as part of that discussion. I would also want a backup plan. What happens if the phone is dead? Lost? There's no service? Mom doesn't answer? The psychiatrist certainly isn't available on demand all day. The IEP should not accidentally turn the cellphone (or Mom) into the student's entire mental health support plan. The cellphone is an accommodation. It isn't necessarily the intervention. If this student regularly becomes so overwhelmed during the school day that she needs outside help to regulate or communicate, I would want the team looking at that need more broadly. Does she need counseling? A designated safe person? Breaks? A quiet location? Explicit instruction in self-advocacy or regulation strategies? A way to communicate “I need help” without speaking? As far as the BIP....I wouldn't automatically jump to “she needs a BIP because she needs her phone.” A BIP should be driven by identified behavioral needs and data, not used as a permission slip for an accommodation. And I definitely wouldn't avoid an FBA/BIP solely because we're worried about a “label.” If behavior is interfering with accessing education, then we look at the behavior, figure out its function and determine what supports are needed. But that's a separate discussion from whether she can have disability-related access to her phone. One other thing jumped out at me: you said she's in gen ed with RTI support, but you're asking how to put this in her IEP. If she actually has an IEP, fine. If she is only receiving RTI/NJTSS and does not have an IEP, that's different. RTI by itself is not an IEP. Depending on her needs and eligibility, the family may need to be discussing a 504 evaluation or special education evaluation rather than simply asking RTI staff to add an accommodation. But assuming she already has an IEP, I would absolutely bring the psychiatrist's documentation to the team, ask that the disability-related need be documented, and request specific cellphone access in the accommodations. NJ's own guidance recognizes IEP/504 and documented health exceptions to the bell-to-bell rule. So this isn't asking the school to ignore the new policy. It's asking them to implement the exceptions that are already built into it.

I’m reaching out on behalf of a friend and was hoping to get your guidance regarding an IEP accommodation for a high school student with autism, severe anxiety, and OCD. With New Jersey’s bell-to-bell cellphone restrictions, the parent is concerned about how to appropriately address her daughter’s need to access her cellphone during the school day. Over the past few years, her daughter has relied on her phone as a support when her anxiety becomes too difficult for her to manage independently. For example, she may text her parents, psychiatrist, or school counselor when she is feeling overwhelmed. At times, she also uses her phone to write down her thoughts when she is unable or uncomfortable expressing them verbally. She is currently in a gen ed setting with RTI support and does not have a one-to-one aide. Access to her phone has served as a way for her to communicate when she is struggling and needs additional support. Her psychiatrist has provided a letter documenting that access to her cellphone is a necessary accommodation related to her disability and mental health needs. I was wondering how you would recommend addressing this in her IEP. How would you word the accommodation, and which sections of the IEP would you recommend including it in? I don’t believe she currently has a BIP in place. Mom is hesitant to pursue one because she is concerned that it could cause others to view or label her daughter negatively. I don’t necessarily share that concern, but I also don’t want to overstep, as that is ultimately her decision. I would really appreciate your thoughts on how you would approach incorporating appropriate cellphone access into her IEP, particularly given the psychiatrist’s documentation, her current educational setting, and her established use of the phone to manage and communicate her disability related needs. Any suggested language or recommendations regarding where and how this should be documented in the IEP would be greatly appreciated. If you have addressed this topic previously, I apologize for the repeat question. I may have missed it and would be grateful for any guidance or resources you have already shared. Thank you so much for your time and guidance. I really appreciate it. Have a great weekend!

I often get asked why I am such an ardent advocate for vaccines. So here’s my answer….I am passionate about getting the truth out about vaccines because I was anti-vaxxer. Yes, you read that correctly. For almost a year, I stopped vaccinating my child. Our diagnosis day was right before a holiday weekend. We were given K’s chromosomal diagnosis…and we had no one to talk to. Offices were closed for the holiday. Just us and the internet…all weekend long. We searched the internet because that is what parents do now. With K’s condition, we had this beautiful infant in front of us, but what the internet told us was quite ugly. Among other things, we read that he could/would develop: seizures, mental retardation (because that is the term that was used then and trust me it smacks you in the face much harder than intellectual disability), and autism spectrum disorder and possibly a sudden unexplained death syndrome-sort of like SIDS, but for older kids with seizures. Too distraught to even talk much, we shared the news with close family via phone and email and sent them the link to the information page. Most were speechless. When you receive a diagnosis like this, I can’t even explain what it feels like. It is so many emotions and yet a complete emptiness all at once…I had this mania running through my head because I didn’t know where to turn or what to do first. You hug your family, your cry, you scream, you read and read some more. There is such a rawness and complete vulnerability that you can’t even explain or try to recreate or liken to something else. One thing the anti-vaccine people have going for them, is that there is more anti-vaccine information online than there is true vaccine information. Or it appears that way, when you’re distressed and searching at 2 am. There is a plethora of anti-vaccine information online and those folks are very good at SEO. SEO is the practice that when someone does a Google search, you want them to land on your page for certain topics so you can structure your website that way. If you do any one of numerous searches about vaccines, autism and other topics, you very likely will get many search results that contain false and inaccurate vaccine information. Yes, it is false and inaccurate. (Google has since tried to remedy this, but it still exists) However…I was in a very bad place. It was like I was walking around with no skin on. I felt like people could see into my head to see what I was thinking and doing, like they could see my soul. I am embarrassed for falling victim to this scheme and for what dangers I could have caused my family and others, but I cannot make apologies for how vulnerable I was. It’s just part of the process. When you get a diagnosis like this, you have to mourn the loss of your typical child and prepare for life with a child with special needs. One of the other steps in this process is to try to “fix” your child. And dammit, I was going to fix him. No way my kid was going to develop autism (silly me, looking back, signs of autism were present from the moment he popped out). No sir, I was going to be the mom who prevented her child from getting autism. And according to what I was reading online, one of the ways to do that was to avoid vaccines. So I did. Again, just to point out how frazzled I was at this point in life, he was 8 months old–so he already had vaccines at birth and regularly up to 8 months. But it made sense to me at the time, that’s all I can say now. I know I mentioned it to my husband but I’m not positive he fully understood what was going on–like most households, I take care of the “mom” stuff and he trusts me to do the right thing. That part hurts me–that I was trusted to just do what needed to be done and I failed. I failed my son and my husband. My husband also was dealing with the diagnosis himself and making sense of it all while trying to maintain a job and everything else. To give you a time frame, this was 2007. That’s important for several reasons. First, Jenny McCarthy’s book didn’t come out until 2008. I wasn’t listening to her. In fact, her book came out around the same time as Dr. Offit’s, and if anything, her book pushed me in the other direction. Andrew Wakefield was certainly not trusted by his {then} medical peers, but as far as the general public, he hadn’t been fully outed yet. His fraudulent study was not retracted until 2010, the same year he lost his license. British journalist Brian Deer published some of his material in 2004, but Wakefield still had a medical license and published study to fall back on. Facebook was around but still very much in it’s infancy and popular largely with just college kids and young adults. I wasn’t being presented information by my close friends, neighbors and peers. I was finding this information online, mostly just from searching and from some parenting chat boards which were popular at the time. Blogging was still also very much in it’s infancy, many people had never heard of a blog. If you saw an article online, you assumed it was from a credible source. Now that blogging and self-publishing are much more popular, we question the source more as readers. There are many blogs and anti-vaccine sites that go out of their way to design their site like a credible news site….when they are in fact, just blogs. Don’t get me wrong, I love blogs, obviously. But anyone can start one at anytime. My pediatrician. Thank goodness she was patient with me and didn’t kick me out of her practice. I still took him in for his regular checkups, and since we were still in the early phases of being diagnosed, he had many follow-up and specialist appointments. Each time, she’d ask me to vaccinate. There was lots of screaming (both of us) and tears (mine). I was belligerent, adamant and oh-so-much-more educated (ha, like most anti-vaxxers think) than the general public. I distinctly remember her saying, during many of our arguments, “Just you wait, there is information coming out….” She was aware of Dr. Offit’s book coming out, but it hadn’t been released yet. For a few months, I acted like nothing short of a giant horse’s ass. I spewed all the buzzwords-proteins, antigens, adjuvants, alternative schedule…I knew it all! This is the really embarrassing part of this journey, because when I hear or read some of what the anti-vaxxers say now, in my head I think, “I can’t believe I used to say stupid stuff like that.” They use big words. There’s a really funny and odd meme that makes the rounds of Facebook every once is a while, and it says “Vaccines don’t cause autism, they just cause demyelinating of the sheath which causes autism.” Sounds impressive, doesn’t it? TOO BAD autism is NOT a demyelinating disease! The most common demyelinating disease is MS, which is NOT autism. But this is the type of language that these folks use to sound and feel superior to you. When you are in a very vulnerable spot, it works. Once you are there, you are drawn to it. You feel like you making proactive choices for your child. You find a common bond in others who have made these choices. You seek reassurance online that these are good choices and there are plenty of people willing to reassure you. A few months went by and during another argument with my pediatrician, she pleaded with me to read Autism’s False Prophets by Dr. Offit which was just being released. And now my copy is signed…more on that later. So I did. I don’t know if it was fate, karma or me getting my feet back under me and coming to my senses….but I actually went home, ordered the book, waited a few days for it to arrive, and read it. And once I started, I couldn’t put it down. I felt ashamed, I felt scared (for what I had exposed K to), I felt stupid…I felt relieved. And then I became angry. Because here’s the thing….there is no case for not vaccinating your child. Vaccinating has risks, no one has ever claimed that it doesn’t. But the risks of NOT VACCINATING are GREATER than the risks of vaccinating. It’s really that simple. Both have risks, one has a greater risk of harm to children. So I’m angry for being lied to. Because it is all lies. As I got my feet under me, I began to embrace my child for who he is, instead of living in fear of who he may become. I felt a life calling to help children with disabilities, and in 20 years I have encountered hundreds of children with various disabilities–including some cancer patients and cancer survivors, children who are medically complex and medically fragile, and some who have other issues that cause them to be immuno-compromised. So then I get angry all over again. Because these anti-vaxxers are putting those helpless children at risk. A child who is going through chemo, and her parents…they have enough to worry about. They shouldn’t have to worry about some mom passing the flu or chicken pox onto their child because they believe false information. I get really angry when I read things like “I don’t care about herd immunity” because while you may not care, for some children, their lives depend on it. Those are the moms I want to throat-punch. (mostly kidding, I’m not violent at all, but that makes me seethe with anger) As parents of children with special needs, we are a very vulnerable population. For as much as I love my child and am able to celebrate him for who he is, we still sometimes wish there was a magic pill or potion that could make all of our struggles go away, right? There isn’t, it’s just a daydream. But, for the anti-vaxxers, they usually have an expensive and interesting array of products to go along with your not vaccinating. None of which is proven to work. If they talk you into not vaccinating, that doesn’t bring them any money. But, if they can sell you the promise of fixing your child with special diets (just buy our book for details!) or supplements (widely available on these sites) or anything else….well it’s quite a lucrative business. This one financial report for the NVIC, just one of many of these organizations, lists that they brought in a million dollars. Where did that money go? How many children did that money help? (answer: 0) Exactly zero lives were made better. They can rant all day long about ulterior motives of doctors, but the anti-vaxxers are making a very nice profit for themselves. I’m angry that I was lied to and encouraged to put my child at increased risk. He has significant special needs and is non-verbal, a headache or backache from meningitis would be impossible to recognize. He has hypotonia, which means he does not have the muscle tone or strength to produce as forceful of a cough as his peers–something like pertussis or an infection could quickly settle in his lungs and become dangerous. Plus, chromosomally, he is put together differently than you and I…at the most basic DNA level, we don’t even know if his body’s reaction to things like measles and chicken pox will be the same reaction that is seen in other kids. It could be much worse. I still get a feeling of panic and sadness when I think of what could have happened. That book changed my life. I was so impressed by Dr. Offit’s writings and his commitment to letting people know the science and what is real and true…I wanted to meet him. So one summer I arranged for a few bloggers to tour the Vaccine Education Center. I sometimes wonder, if it hadn’t been for that book, would I have come around? What would have been the catalyst for me to regain my common sense? I don’t know…but I am glad that it happened sooner rather than later. You know how when people who are former smokers…they become the most ardent supporters for people quitting smoking? It’s like that. I am determined to help my fellow special needs moms not fall victim to this nonsense. Nonsense that is actually becoming dangerous. We are seeing vaccination rates that rival some parts of developing countries in Africa. We are seeing epidemics of measles and whooping cough that we haven’t seen since the 1950s. All because fear sells. Now it’s time to fear the diseases again. Vaccine skepticism is a first world luxury. For now, anyway. So there it is, all out in the open. I think it was easier for me to come to my senses because I am a science person and skeptic anyway. I need to see evidence. I truly feel that there are probably some anti-vaxxers who are in it so deep that they can’t get out, even though in their gut they know that they have been lied to and are lying to others. It’s very hard to stand up and say “I was wrong” especially when you have put your family in danger, put other children in danger, and have encouraged other moms to do the same. But there is always time to do the right thing. You don’t have to go full force and join Shot at Life and become an advocate like I did. You can start with one big, meaningful step–take your child to get vaccinated. Get caught up on his/her vaccines, apologize that they have to do so many so late in life. Allow yourself to feel guilty for being misinformed and allow yourself to forgive yourself for that. You might also be interested in: Grieving Your Child’s Disability Diagnosis: A Controversial Conversation

Yes, I do, though maybe not in the way you're thinking. The present levels stuff I have is for teachers who contribute to IEPs. https://dontiepalone.com/iep-bundle-teachers/ I have lots of sample Present Levels statements, goals, accommodations, and other IEP examples in those IEP Toolkits (now sold as a bundle). I also have several articles on Present Levels. https://adayinourshoes.com/present-levels-iep/ One thing I would caution against is trying to make the Present Levels "strongly worded." Instead, make them specific, objective, and data-driven. A statement backed by data is much harder for a team to dismiss than one that's simply written with stronger language. For example, instead of saying your son has "major executive functioning challenges" or "severe work avoidance," I'd want the IEP to describe exactly what that looks like. How often does he initiate work independently? How many assignments are incomplete? How many prompts does he require? What happens when supports are removed? What is the educational impact? https://adayinourshoes.com/task-avoidance-task-initiation/ https://adayinourshoes.com/teaching-task-initiation/ For students who are cognitively strong, schools often spend a lot of time describing their strengths while minimizing how their disability affects their ability to access their education. "He's very bright" or "He's capable of grade-level work" doesn't tell the team why he's not making meaningful progress. The Present Levels should clearly explain how his executive functioning, emotional regulation, anxiety, or work-avoidant behaviors affect his ability to complete work, participate in class, make progress toward goals, and access the curriculum. That's the information that drives appropriate goals, accommodations, and services. Since you mentioned that his therapeutic school tends to downplay his needs, I'd also compare his progress reports to the actual data. Do the grades, missing assignments, behavior logs, teacher emails, or other documentation tell the same story? If not, that's something I would absolutely raise at the IEP meeting and ask the team to explain. And one last tip: whenever you see phrases like "needs occasional prompting," "sometimes struggles," or "making progress," ask for the data behind those statements. How much prompting? How often? What data shows he's making progress? Vague language is one of the biggest red flags I see in Present Levels. The more specific and measurable they are, the better the rest of the IEP will be.

Posting for a reader: Do you have templates or examples of specific and strongly worded Present Levels statements for highly cognitive teens who face social, emotional, and major executive functioning challenges? My son's therapeutic school tends to downplay his needs in his IEP and progress reports. While he has significant potential, his progress has been severely limited by massive work-avoidant behaviors. Any resources you could share to help ensure his IEP accurately reflects and addresses his challenges would be greatly appreciated.

First, I'm so sorry this happened to your son. No child should be afraid to get on the van just to get to school. And yes, I can tell you that the same thing happened to my son years ago. So yes, it absolutely can be done. In our particular case, it escalated quickly. The other boy decided that he just did not like my child (both have profound autism) and then it culminated in the other boy actually breaking Kevin's seizure helmet. I was seeing red, believe me. A few thoughts: The school district cannot simply shrug and say, "Well, the transportation company hasn't figured it out yet." The district is ultimately responsible for ensuring your child receives transportation safely if transportation is part of his educational program. Contracting with a private transportation company doesn't transfer that responsibility. If they promised you last year that your son would be on a different van, I would immediately put everything in writing (if you haven't already). I'd send an email to the special education director, transportation director, and your son's case manager. Include inyour email: The assault that occurred last year. The other dangerous behaviors you witnessed or were told about. The district's assurance that your son would be assigned to a different van this school year. That, as of today, they have not implemented that solution. That you are requesting written confirmation of the transportation plan before school begins. I would also state plainly that your son cannot safely ride with the student who assaulted him and that you are requesting transportation that allows him to access his education safely. Mention the possibilities of what could happen if this is not fixed (serious injury, school refusal). Keep everything in email/writing. (You know that's one of my favorite pieces of advice.) Would I hire an attorney today? Probably not as my very first step. I'd first create a solid paper trail showing that you've notified the district of the safety concern and given them an opportunity to fix it. If they refuse, ignore you, or insist he ride anyway despite the documented safety concerns, then it may be time to consult a special education attorney or advocate in your state. One other question: Is transportation listed as a related service on your son's IEP? If so, that strengthens your position because the district has an obligation to provide that service in a manner that is safe and appropriate. Don't let anyone minimize this by calling it "a transportation issue." Your son cannot benefit from his education if he's terrified to get on the van every day. I'd start with the paper trail. If they still refuse to act, then we can talk about the next escalation steps.

Posting for a reader: I have a question regarding the transportation for my son that his local public school provides. Last year at the end of the school year my son was attacked by another student on the same van. The student also pulled another child’s hair and also grabbed the van driver’s arm while driving. The other child goes to the same private school as my son but is a student in another school district, but the same county as we live in. The school is not in our county it is about 48 miles each way. The public schools have a contract with a local company to provide bus and van services. So they do not have the transportation hired directly. I was told that last year that by this coming school year they would put our son on a different van so that he would not need to be scared every time he got onto the van going to or from school. I am now being told that as of today they still have not resolved it van situation for this coming school year. I am not going to put my son in danger going to or from school anymore. I need some advice as to what my rights are. Should I contact a lawyer to get this problem resolved or what can I do.

One of our community members shared something that got me thinking. She's a Reading Interventionist and former Special Education teacher. A parent recently told her that another student sometimes makes comments that make her child feel "stupid" for getting reading help. Oof. First, that parent's response was exactly right. She had great advice for him, reminding him that we all have things we are good at and things we need more work on. That's true for kids and adults. But it got us wondering... What can we teach kids to say in these moments? Not every child is ready to ignore it and walk away. Some kids feel more confident when they have a few phrases prepared ahead of time. So let's crowdsource some ideas. If another student says something like: • Why do you leave for reading? • Are you in the dumb group? • Why do you need extra help? What are some responses a student could use? Examples: ✔ Everyone learns differently. ✔ I'm working on my reading skills. ✔ Lots of people get extra help with things. ✔ This is what helps me learn. Parents, teachers, and students, what would you add to the list? Let's build a resource together that helps kids respond with confidence instead of feeling ashamed for getting the support they need.

When a child’s anxiety is high and their emotions are all over the place, that’s usually a nervous system issue first and an academic issue second. If he’s feeling overwhelmed and lost, pushing forward academically often backfires. It can reinforce the “I can’t do this” feeling rather than build skills. Going back to easier basics is not the same as “holding him back.” It can be strategic. If he’s missing foundational pieces, filling those gaps can actually accelerate progress later. Confidence and competence build on each other. The bigger question isn’t whether he’s putting his “all” into it. It’s whether the work is at the right instructional level and whether he feels safe and capable while doing it. A regulated child can learn. A dysregulated child usually can’t access what they know. You might consider: – Identifying exactly where the breakdown happened (specific skills, not just grade level) – Temporarily reducing volume while increasing success – Adding predictable structure so he knows what to expect each day – Separating “he won’t try” from “this feels too hard” Advancement doesn’t always look like moving ahead in the curriculum. Sometimes it looks like rebuilding stamina, confidence, and skill depth.

A reader emailed me: My grandson was home schooled Part of last year and part of this year and started back to home school in January and doesn’t want to go back, his anxiety is high and emotions are all over. I feel it I because the program we used didn’t follow the school and he is feeling overwhelmed and lost. I plan on home schooling again. Should I go back to the easier basics so he is more comfortable but am worried he will not keep advancing if he doesn’t put his all in to it. Thoughts?

Recently, I declined to approve a post from a community member. It read: I'm helping out a friend who is trying to get help for her daughter, and I know this information, but I can't seem to find the specifics. What impact does it have on a school district based on the number of students they have receiving support? Is there some sort of benchmark they are trying to stay below or are they just denying it to show control? I declined the post and told her I don’t answer questions like that. Not to be mean. Not to call anyone out. But because that line of thinking sends parents down the wrong path. There’s a lot wrong with that advocacy strategy. Most importantly, it doesn’t work. It’s not child-focused. It says nothing about the child’s disability, their present levels, their skill deficits, or educational impact. And that’s not how 504 or IEP eligibility decisions are made. Let’s entertain it for a minute. Say I told her the district could only have 500 students receiving services and they were at 498. What are you going to do with that? Walk into the eligibility meeting and say, “A-ha! You’ve got two spots left, so this child gets one”? That’s not how this works. Or what if I told her the actual truth, that there is no cap under IDEA or Section 504 on how many students can receive services. Yes, federal auditors may look at over-reporting, but there is no set number a district has to stay under. Then what? Do you march into the meeting and accuse them of denying eligibility just to “show control”? How far do you think that gets you? I understand the frustration. I really do. When a school says no, the instinct is to look for the hidden reason. The budget. The politics. The control. But here’s what I’ve learned after years of doing this and training hundreds of parents: You win by staying relentlessly child-focused. The school likely denied services because they do not believe the child meets eligibility criteria. Yes, finances and district culture can influence decisions. I’m not naïve about that. But you don’t overturn denials by exposing motives. You overturn denials by building a case. You focus on: – Present levels – Educational impact – Data – Documentation – The legal criteria for eligibility That’s it. Even in difficult districts. Even when the answer starts as “no.” My clients — and parents inside the Don’t IEP Alone Academy — secure new services and eligibility decisions all the time. Not because I know a secret about district quotas. But because we focus on the right things. We keep the spotlight on the child. That’s what changes outcomes. If you’ve found yourself chasing theories about district motives instead of building your child’s case, that’s a sign you need strategy — not more frustration. That’s exactly what I teach inside the Don’t IEP Alone Academy. It’s not about being louder or catching the district in something. It’s about understanding how decisions are actually made — and positioning your child’s needs in a way that’s hard to dismiss. If you’re ready to stop spinning your wheels and start moving strategically--registration is open now, with 10% off. Join today: https://dontiepalone.com/academy/ and use the code RIGHTDIRECTION to get 10% off.

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.

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 just walked away and found other people. 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 twenty-year-old. 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 15 and taller than you. 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 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