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Parent and Professional Blogs

Sunday Night Emails

I Used to be an Anti Vaxxer.

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 wh
Hands & Voices of MS- day 2 entry

Public Schools in MS

I realize that on a limited budget it is hard to cover it all. I don't get why our smaller public schools have inclusion teachers and SPED teachers who don't have any training for teaching D/HH children. Schools shouldn't let a child enroll while knowing noone there is trained to teach them. I also think that IEP discussions with the school should be less difficult to understand, especially in rural areas where parents may have less education. But, these are only my THOUGHTS... Until they are tu
Sunday Night Emails

The Beginning, Not the End, of IDEA’s Promise.

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
Sunday Night Emails

It's just a shitty thing to say.

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 vi
Sunday Night Emails

I'm really more of a Carla than Diane.

So...Norm from Cheers died. I know, I know—dating myself a bit. But I loved that show. Still do. Hulu thinks I need a rewatch and honestly? Some of the episodes have aged like milk. (Yikes.) There was one that stuck with me, though. Sam signs Diane up for a “barmaid beauty” contest. She’s horrified—because, duh, Diane. But she goes along with it, and by the end, she realizes that winning gives her a bigger platform to speak out about objectifying women. Anyway, it hit me: I’m in my own
Sunday Night Emails

Today was pretty scary.

Today was a really odd day. I mean--spent the day watching high school basketball which is pretty much what I do every weekend. But coming home, traffic was a hot mess. And, the whole FIFA thing was letting out in south Philly....and we got caught in this mele and traffic stop on 95 right by the airport. As we're sitting there stopped (yes, stopped on I-95 so the Juventus busses could have the right of way with a police escort), the guy behind me threw a can at the car next to him! (which w
Sunday Night Emails

Well, you hanging in there?

How's everyone doing? Whether this past week (and next) was vacation, time off, ESY or just business as usual, I hope you were able to find time for yourself. For those of you who have been around me for a while, maybe you remember back in the winter when it was first announced that the US Dept of Ed was being dismantled. First, it was shock. Then, within about 24 hours or so, I was on social media and email, saying "oh hell no, fucking bring it!" I still stand by those statements, bec
Sunday Night Emails

Yes, it matters.

Last week I was supposed to go to this "thing" out in Gettysburg, for two days. It was part conference/part work session, a statewide thing run by our state Bureau of Special Ed. Since PA had the PARC decree 3 years before IDEA existed, we had "IEPs" and special ed, and we have these parent-led groups called Local Task Forces. I've written about them on my site before, because they're a fantastic idea, but they have this clunky name that is unappealing. Anyway, I am chairing the one for my
Sunday Night Emails

Milestones.

Facebook reminded me that ten years ago this week, Kevin had his first seizure. With his genetic condition, we knew it was a strong possibility, but woke up grateful each day that it hadn't happened. Yet. It was summer, just like now. We were headed into what should’ve been a lazy, sunny week, but instead, our world cracked open and never quite sealed back the same way. I can tell you where I was standing. I can still hear the silence that follows a seizure—that eerie quiet where time
Sunday Night Emails

Competitors? Or colleagues?

For obvious reasons, I follow a lot of education, disability and special ed related stuff on social media. This one post still has me thinking about it, and I saw it like 2 weeks ago. I'm not personally criticizing anyone--we're all entitled to our opinions. And, our world view is our world view, based on what we've experienced. But clearly my advocacy journey has been quite different than hers. I offer advocate training. On Thursdays during the school year, we Zoom at 2:00. Sometimes I bring in
Sunday Night Emails

Caregiving

Kevin had an appointment in center city recently. Yes, pushing an adult in a wheelchair through Philly when my car said...(checks notes)...104 degrees. Whew! Many of his doctors teach and do research. And, he asked us to participate in a study they're doing about disaabled kids who have to transition from pediatric to adult providers. I said yes, of course. Because this? This is exactly where we are. And it’s hard. On the drive home (in traffic because the city was teeming with tourist
Sunday Night Emails

The shortcut that isn’t worth it.

Like a lot of people, yes—I’ve tested AI to see if it could lighten my workload. Every time, I’ve ended up disappointed. In the 15 years since I started, my work has shifted from “just a blog” to a full-scale online business that I mostly run alone. The pressure is real, and shortcuts are tempting. I tried using AI for blog posts... it gave wrong info, clunky phrasing, not my voice, and hours of editing. No time saved.   I tried it for emails and social posts, fine at first, unt
Sunday Night Emails

Stop. Notice. What a Woodpecker (and Some Torn Books) Taught Me

I have this neighbor who has become one of my closest friends. Years ago, we both decided we needed to walk more, so we carved out time...even with six kids between us, two IEPs, and busy work lives. Now we manage to get in 4–5 walks a week. It’s one of the best things I do for myself. This morning I got to our meeting spot first. While waiting, I heard an odd sound and, being the bird nerd that I am, looked up. There was a pileated woodpecker hammering away. If you’ve never seen one, they’
Special Needs Moms and Wine

Those unfortunate anniversaries.

Hi friends, I used to keep a section on my site about women and drinking. Especially special needs moms and drinking, because we are at exceptionally high risk of dependency. (high stress life, little to no support) Years ago, some SEO people told me to prune anything “irrelevant” to IEPs and disabilities, so I did. But I held onto those pieces. One of them feels right to reshare now. And, there is a "blog" section of the Village, where anyone can share whatever they want--like an onli
Sunday Night Emails

The girls weekend, that wasn't.

So I was supposed to go on a girls’ weekend this month with some college friends. You know — shopping, eating, flannel pajama pants in a rented house. And then someone in the group chat said, “Can we not talk about politics this weekend?” And the others chimed in with, “Yes, please!” And listen, I get it. I talk about politics a lot. It’s who I am. It’s literally my life’s work. Disability rights are politics. Public education is politics. Your kid’s IEP? Tied to federal law..... which
Sunday Night Emails

OSEP is gone. Here's what that means—and what you can do. But, not all hope is lost. Seriously.

Normally I send my Sunday email out later...and had it scheduled as such. But, that can wait until next week, I couldn't not send this out today. Remember when some folks said, "It’ll be so much better now"? Yeah. About that… In case you haven’t heard, OSEP (Office of Special Education Programs, the federal office that oversees special education) has basically been wiped off the map. It’s part of a much bigger plan to gut the Department of Education. All the employees were fired F
Sunday Night Emails

I almost didn't send this.

Hey. I almost didn’t write tonight’s email. I’m tired. You’re tired. And honestly, it’s been one of those weeks where everything feels just slightly off. The kind where you open your inbox, think “I should deal with that,” and then… don’t. But that’s exactly why I write these. Because if I’m feeling it, I know some of you are too. I was supposed to speak at an event in Chester County yesterday. They asked me Thursday, while I was elbow-deep in a cart at BJ’s, hunting for pull
Special Needs Moms and Wine

The Wine Mom Culture

I’m an alcoholic. Well, almost. I am immersed waist-deep in the suburban mom wine culture, that’s for sure. More on that in a bit. Actually, I’m not an alcoholic, but my mom was. So much so that she actually drank herself to death when I was 9 and she was 39. Nice, huh? So I have a lot, I mean a LOT of baggage when it comes to drinking, parenting, and self-examination. Not wanting history to repeat itself and all that. An alcoholic Mom. Despite my less than stellar childhood,

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