I Don’t Need You to Tell Me How to Feel about Parenting a Disabled Child.

I Don’t Need You to Tell Me How to Feel about Parenting a Disabled Child.

Parenting a Disabled Child This might be the biggest decision you’ll ever make as a parent. I’m talking about the decision to be happy. No, no, really, stick with me here. I know what you’re thinking. “All this deciding to be happy stuff is bullshit.” I used to think that too. But try it from…

Is “Special Needs” Offensive? The new term to say instead of Special Needs.

Is “Special Needs” Offensive? The new term to say instead of Special Needs.

Special Needs vs. Disability Several months ago, I did a blog post about People First Language, and why it shouldn’t be mandated. Certainly not by non-disabled people. At the end of that post, I said this: Up next: I’ll be tackling “special needs.” Because that vernacular is seeing a shift too. Stay tuned.  Because many people…

5 Strategies to Advocate for Persons with Mental Health Issues.

5 Strategies to Advocate for Persons with Mental Health Issues.

Mental Health Advocate Mental health, depression and suicide are all the chatter following Kate Spade’s death. In honor of that, I am updating a post from 2012 that talks about advocating for friends and loved ones with a mental illness. It doesn’t have to be complicated or time consuming. Just a few minutes out of…

Implied Consent | Why Parents Need to STFU about their Disabled Kids.

Implied Consent | Why Parents Need to STFU about their Disabled Kids.

Implied Consent Have you ever been tagged in a completely unflattering photo on Facebook? I mean the kind when you look at it, you groan and debate in your head if the person will notice if you untag yourself? It’s awful, right? Social media and smartphones have brought us a whole new set of societal…

Was Dr. Seuss a Racist? See the drawings and judge for yourself.

Was Dr. Seuss a Racist? See the drawings and judge for yourself.

Dr. Seuss was Racist Dr. Seuss is a prolific children’s book author and global icon. And Dr. Seuss has a history of racial baggage that educators should understand when introducing his writing to their students. From Tolerance dot org This knocked the wind out of my sails yesterday. Not sure how it didn’t hit my…

6 Reasons to STOP Assigning a Mental Age to Disabled Students

6 Reasons to STOP Assigning a Mental Age to Disabled Students

Mental Age I guess it’s a coping mechanism. Or a way of trying to parent and better understand our kids. But it’s also an antiquated practice that needs to go. I’m talking about assigning a mental age to our kids. In particular, this happens with students who are intellectually disabled or autistic, or both. You…

I’m Tired of Justifying My {Disabled} Son’s Existence.

I’m Tired of Justifying My {Disabled} Son’s Existence.

I decided today, I am done living life with a disclaimer. Here’s the thing. I’m tired of society making me justify my son’s existence. And I’m tired of constantly adding disclaimers to my conversations. Always adding a disclaimer. Here are some real-life conversations I have encountered within the past few weeks: Conversation 1: Me, complaining about…

The Extraordinary Burden of IEPs on Moms.

The Extraordinary Burden of IEPs on Moms.

The Extraordinary Burden of IEPs on Moms “Is it getting worse?” I sighed. Then nodded. “It is.” I was at lunch with a local administrator. We were brainstorming some ideas to make the overall climate of special education must less tense. Improve relations. Try to work together. I wonder if we can. Here we are,…

Ableism and Autism | When Autism Moms are the Worst Ableist Parents

Ableism and Autism | When Autism Moms are the Worst Ableist Parents

Ableism and Ableist Autism Moms I am just steamed this morning. Nothing like waking up to see 250k special needs moms being ableist and wallowing in ableism. Have you seen it? First, it started with a viral post about “The Last Time.” About how when you have a kid, you’re just cruising through life, raising…

Autism Age-Appropriate Interests | What Are Age-Appropriate Interests for a Developmentally Disabled Person

Autism Age-Appropriate Interests | What Are Age-Appropriate Interests for a Developmentally Disabled Person

Autism and Age-Appropriate Interests “Who gets to decide what is an age-appropriate interest for a disabled or autistic child?” This is an issue that has been on my mind a lot lately. My son will be 9 this summer, and as I’ve posted many times, he just loves all things Sesame Street. I’m starting to…

Anti-Racism Resources | Books | Activities | Lesson Plans | Primary Schools

Anti-Racism Resources | Books | Activities | Lesson Plans | Primary Schools

Talking about Race with Kids This past summer, I hosted a series of chats about Race. It’s an issue that is important to me and this post is long overdue. That chat series wasn’t without controversy, but I am committed to using my platform for positive change. With that, I had promised that we would…

45th Anniversary of IDEA 1975 | Advocating for Full Funding of IDEA

45th Anniversary of IDEA 1975 | Advocating for Full Funding of IDEA

On November 29, 1975, President Gerald Ford signed IDEA 1975 into law. Prior to IDEA 1975 taking effect, only 20% of children with disabilities were in the public school system. Most of the others were either institutionalized or being kept at home in a custodial care situation–parents taking care of them but they were not…

Interview: John Fetterman for US Senate

Interview: John Fetterman for US Senate

PA Lt. Governor John Fetterman for US Senate Today PA Lt. Governor began officially ‘exploring’ the idea of running for Senate in 2022. He ran in 2016, but lost in the primary to Katie McGinty. Much has changed since then–he’s now our Lt Governor. Back in 2015, when I interviewed him, he was Mayor of…

Why Every Parent Should Get Involved in Special Education Lobbying | IDEA Re-Authorization

Why Every Parent Should Get Involved in Special Education Lobbying | IDEA Re-Authorization

Citizen and Parent Advocacy I think we’re in this for the long haul. I wrote this right after the 2016 election, in hopes of inspiring parents to step it up and get more involved. And so many have! That’s fantastic. I am updating this post as we head into a new Congress at the beginning…

27 Ableist Tropes and Characters in American Movies | Examples

27 Ableist Tropes and Characters in American Movies | Examples

Ableist Movie Tropes and Characters I think most of us would agree that if a movie calls for a Black character, then a Black actor/actress should fill that role. Right? It would be incredibly offensive to have a white person dress up as Black and play the role. However, this happens to disabled people all…

25 Racist Microaggressions heard in IEP Meetings

25 Racist Microaggressions heard in IEP Meetings

Microaggressions Against Black IEP Students Most of you know I’m all in, as far as working harder to educate others, and my own personal biases as far as racism. And, I have a platform. I have been using that platform and will continue to do so. From the series of Race Listening Sessions this summer,…

39 Ableist Microaggressions You Might Encounter at an IEP Meeting | Think Before You Speak!

39 Ableist Microaggressions You Might Encounter at an IEP Meeting | Think Before You Speak!

Ableist Microaggressions Microaggressions have been getting a lot more attention recently, and with good cause. It’s very easy to spot someone who is openly hateful, racist or ableist. I mean, I think we can all agree that if you call someone the R word, that’s ableist. But ableism takes many different forms and shapes. And,…

It was never just about Trump. (Why I won’t remain neutral or quiet.)

It was never just about Trump. (Why I won’t remain neutral or quiet.)

It’s who I am. When I was in high school in the 1980s, during the summers my friends and I would drive around the mid-Atlantic states to see the Grateful Dead. I’ve also seen Jefferson Airplane, CSN, Pink Floyd and other groups in that genre. Long hippie skirts, tie-dyed shirts, jingly bell bracelets on our…

8 Ways the Special Education System Really is Stacked Against Parents.

8 Ways the Special Education System Really is Stacked Against Parents.

8 Ways the Special Education System Really is Stacked Against Parents. The special education system is stacked against parents. It’s not your imagination. It is not an even playing field. Lately, I’ve been feeling very deflated. I have written to several people I know in this field to reach out for help, reach out for…

When Autism Awareness Materials are Ableist | Why I loathe April.

When Autism Awareness Materials are Ableist | Why I loathe April.

When “Awareness” is Ableist. Last week, I did a post about a video that was going viral. I said then, and still think, that it’s ableist. Not to pat myself on the back (ok, maybe a little), the well-known activist Alice Wong agreed with me and shared my post. Her group even included trigger warnings…

Perfect Attendance Awards | 8 Reasons why they’re Garbage.

Perfect Attendance Awards | 8 Reasons why they’re Garbage.

Perfect Attendance Awards Perfect attendance awards are a terrible idea. I get it–I get why they were developed. To encourage kids with chronic absenteeism to attend school, and it was assumed that increased attendance would lead to increase performance. In fact, today, only 2% of educators and parents surveyed believe that perfect attendance awards are…

14 Tips for Writing an OCR Complaint that gets Noticed | IEP | 504

14 Tips for Writing an OCR Complaint that gets Noticed | IEP | 504

OCR Complaint I know, we complain too much. What can I say, it’s a complaints-based system. One of the remedies that parents have in special education is to file a complaint with your Office of Civil Rights. It’s easy, and it’s not. But, don’t be intimidated. One of the ways you can create change is…

The Special Education Funding Crisis explained in 5 graphics.

The Special Education Funding Crisis explained in 5 graphics.

Special Education Funding I honestly cannot believe that this blog is almost 10 years old, and it just occurred to me this week to write about Special Education Funding. I was participating in a webinar and it just hit me. So often, parents ask me, “Why? Why does it have to be like this? Why…

I’m tired of talking about my son’s health.

I’m tired of talking about my son’s health.

I know they mean well. People. They ask. But the holiday season just ended and I.am.exhausted. Mentally, not physically. Emotionally. My son has significant health issues. He’s medically complex. I talk about his issues often on the blog and in life. I posted our GoFundMe that we needed help with prior to his brain surgery….

What’s so bad about school choice? Lots, actually.

What’s so bad about school choice? Lots, actually.

Why School Choice is a Bad Idea. My heart sank. I screamed at my computer. I texted other advocate friends. We just couldn’t believe what we were reading. Seriously, a billionaire campaign donor with zero public education experience. That’s who he nominated? A woman whose family has dumped millions of dollars into school choice. This…

It’s OK to ask us about my son’s disabilities. No, really, it is.

It’s OK to ask us about my son’s disabilities. No, really, it is.

Questions about Disability A few weeks ago, my younger son (non-disabled) had a friend over to play. We’ve known this family for about 6 months. Both older kids have been in my home and have been exposed to my older son numerous times. Anyway, the older sibling came down to walk his sister home. While…

Politicians with Disabilities (and their families): But do they support the cause?

Politicians with Disabilities (and their families): But do they support the cause?

Politicians with Disabled Family Members Politicians-disability-community-family. You’d think that those words would go together, right? Do you remember it? It seems like a lifetime ago. But how the gossip was spreading in the disability community. “She has a son with Down Syndrome.” Wow, it was someone like us! Believe it or not, I was a…

Is People First Language dead? No, but demanding it is.

Is People First Language dead? No, but demanding it is.

Person First Language People first vs. identity first language, PFL vs IFL. When I was first introduced to the concept of people first language, I was all “Yes! He’s a person first!” I reworked blog posts and titles to accommodate the language. I corrected friends and family when they misspoke and gave diatribes about how…

F*ck Steve Harvey: Why no one should be watching him anymore. (are they even?)

F*ck Steve Harvey: Why no one should be watching him anymore. (are they even?)

Steve Harvey’s “Moral Barometer” is broken. Everyone deserves a second chance. And I gave one to Steve Harvey. He mocked people with disabilities in 2015. I was angry and I posted about it (below). Brian loves Little Big Shots and I let him continue to watch it. Steve Harvey partners with Ellen on a lot…

7 Things ALL Schools need to STOP doing, right now.

7 Things ALL Schools need to STOP doing, right now.

Public Education Reform I call myself a Public Education supporter. I advocate, I lobby, I educate myself on the issues. Public education benefits our society, well beyond our own kids. I truly want it to succeed. (This post used to say 5, but thanks to readers contacting me, I’m adding two.) I hear these same…

{Special Education Lobbying}  Testimony from Senate Education Committee

{Special Education Lobbying} Testimony from Senate Education Committee

Lobbying for Special and Public Education If you follow this blog, you know that my main passion is lobbying for changes to the very broken special education system. I learned early on that while it’s important work to be helping one child out of a situation, it’s necessary to be involved in systems change too….

7 Must-Read Facts about Poverty and Disability.

7 Must-Read Facts about Poverty and Disability.

Disability and Poverty This post is at the request of my readers, in particular those in my Facebook group. Many have repeatedly said that they want to do something and want to be involved and help. But, because of the dynamics in our Congress right now, there just are not a lot of actionable items…

Are you Upset about Special Education? Are there solutions to this mess?

Are you Upset about Special Education? Are there solutions to this mess?

Solutions for Special Education Bullying. Restraints. Seclusion rooms. Ostracizing our kids. Not being able to read. Refusing to go to school. Juvenile justice system. Zero tolerance. Is it any wonder that special needs moms are incredibly stressed out? Sometimes our kids encounter some of this stuff on a daily basis. And sometimes all of these…

13 Questions to Ask School Board Candidates | IEP | Special Education

13 Questions to Ask School Board Candidates | IEP | Special Education

Questions for School Board Candidates “I’d go, but what would I ask?” I always encourage IEP parents to attend candidate forums. But that is the response I get so often. You want to inquire about school board candidates and their opinions on special education, IEPs and inclusion. But it can be intimidating, because you can’t…

Parents, Before you go to the News Media with your IEP issues….

Parents, Before you go to the News Media with your IEP issues….

You should tell the media about this! It’s a really common piece of IEP advice. And, I get it. Our kids are treated horribly sometimes. They get bullied, sometimes even by school staff. Kids are denied much-needed academic interventions, often for reasons none other than a power trip. It’s natural to think, “If more people…

21 Celebrities who are Smashing Disability and Mental Illness Stereotypes.

21 Celebrities who are Smashing Disability and Mental Illness Stereotypes.

Celebrities with Disability and Mental Illness It matters. The more we see people with disabilities and mental illness, the more normal it becomes. It can also help children who are struggling envision a future for themselves. Here are celebrities who are helping us smash stigmas for disabilities and mental illness. Bebe Rexha: The singer and…

{Educational Surrogate Parents} What, Why and How to become one.

Become an IEP Educational Surrogate Have you heard of being an IEP educational surrogate parent? Many times parents ask me how they can give back to the special needs community. Particularly for those who have their own child’s situation settled and stable, and have the knowledge, but maybe not quite enough knowledge to be working…

Hey IEP Moms! You complain too much!

Hey IEP Moms! You complain too much!

Hey, Special Needs Moms-You complain too much! Really, you do. I mean, c’mon already. Aren’t you tired of all the complaining? I am. No, really, I am. Special needs moms, dads….anyone who is closely connected to the special needs community…we all complain too much. And it’s exhausting. Did you know that the laws that are…

Things I wish I’d said to the guy at Chipotle.

Things I wish I’d said to the guy at Chipotle.

Things I wish I’d said to the guy at Chipotle. Today I went to an Assistive Technology Expo. It’s a nice event, hosted by my state’s Dept of Education. At lunch, I shuffled down to the local Chipotle, because it’s something I don’t have near me, and when I am near one, my kids won’t…

One Mom’s IEP Battle, and What She Discovered.

One Mom’s IEP Battle, and What She Discovered.

The Special Education Battle. I woke up this morning and put my armor on. I am weary and broken, but there is still a war to fight. They have strength in numbers. I have strength in tactics. They have strength in resources. I have strength in strategy. They have strength in deception. I have strength…

Do we need to change the way we introduce our disabled children?

Do we need to change the way we introduce our disabled children?

How do you introduce your Disabled Child? Do you know what an elevator pitch is? I attend lots of workshops for bloggers and PR stuff, and it often comes up. It’s a succinct way of “selling yourself” in 2-3 sentences. It’s a term coined in the business world. Think of yourself in an elevator with…

{Ted Kennedy} List of Accomplishments with Disability Legislation

{Ted Kennedy} List of Accomplishments with Disability Legislation

Ted Kennedy: February 22, 1932- August 25, 2009 Here is the video tribute that was done for Ted Kennedy at the DNC convention. (this is an older post recently udpated) I’m a big fan of his and miss having him here to champion for our kids. Yes, he was a man who made some mistakes,…

Don’t teach what you’ll have to unteach (or unlearn!)

Don’t teach what you’ll have to unteach (or unlearn!)

I was chatting with my mother-in-law yesterday, and we were talking about my son when he was a baby. My son was (is) delayed in almost all areas, so standing and pulling to a stand were no different. During one of her visits, she taught him to pull himself to a stand and bounce. It…

Me too. {and more importantly, them too~learn about sexual abuse and disabled students)

Me too. {and more importantly, them too~learn about sexual abuse and disabled students)

Me too. You’ve seen this, right? The “me too” campaign going on right now in social media? If you’ve been sexually harassed, you’re to put “me too” as your status update or tweet to give people an idea of how widespread this problem is. I hate him, I really hate him. He’s gross and disgusting…

Does Live Nation price gouge disabled people?

Does Live Nation price gouge disabled people?

Does Live Nation price gouge disabled people? I don’t know. Sounds like there might be something to this, based on a story that was shared in an activism Facebook group that I am in. Read on (paragraph breaks are mine to make it easier to read): FYI to anyone who orders accessible tickets through TicketMaster…

Gee, we can have your crumbs? Thanks for nothing, Chuck E Cheese. {my rant about their sensory time offerings)

Gee, we can have your crumbs? Thanks for nothing, Chuck E Cheese. {my rant about their sensory time offerings)

Ah, Sunday mornings. I love them. I often try to feed my dogs later and let them out later than usual on Saturday evenings, so that will buy me some extra time on Sunday mornings. If it’s rainy and cold, I love staying snuggled in bed. I still get a Sunday paper. On warmer days,…

my travels to Harrisburg~Basic Education Funding Reform Commission Hearing

my travels to Harrisburg~Basic Education Funding Reform Commission Hearing

I have discovered that my real passion is systems advocacy. That is, trying to make the laws, programs, systems and funding better for our kids. I will say, that for right now, for me to be able to do this is a luxury. And what I mean by that is, my own personal situation is…

The PARC Decree and the most under utilized disabilities resource in PA.

The PARC Decree and the most under utilized disabilities resource in PA.

In a post I did yesterday, I highlighted a bit of history from the Disability Rights movement and how we got to where we are today. I didn’t go into much detail about Pennsylvania, Pennhurst and the role that Pennsylvania parents had on the movement. Families in Pennsylvania really played a strong and crucial role…

Senator Harkin says farewell~includes list of disabilities legislation accomplishments

Senator Harkin says farewell~includes list of disabilities legislation accomplishments

This is a day I have been dreading. I have been dreading it ever since he announced he was not going to run again in the November, 2014 elections. If you follow my blog, you know that I am a huge fan of Senator Harkin. He has long been a champion for people with disabilities…

{Thoughtful Thursday} Lessons learned from Best Friends Animal Society

{Thoughtful Thursday} Lessons learned from Best Friends Animal Society

I haven’t even begun to do all the posts from our summer travels, but I’m going to start. Earlier this summer, we traveled out west and visited the National Parks, some Navajo sites (like Monument Valley) and one of our day trips was Best Friends Animal Society. I thought that I would first write about…

Our day at the 77Kids fashion show at King of Prussia Mall

Author’s note: I was feeling very sentimental about this experience so I wanted to republish it for Thoughtful Thursday. Never doubt what our kids can do! This event took place in April of 2012. As a blogger, I network with dozens and dozens of other bloggers in all blogging genres. Yesterday, a mom who is a…

{Thoughtful Thursday} and someone gets to come in last place

{Thoughtful Thursday} and someone gets to come in last place

Like many parents, while my kids are young I am trying to introduce them to a variety of extra-curricular activities. It can be tough when your child has additional physical and mental challenges. K’s motor planning is pretty poor and his processing is slow. That pretty much means any sport or activity that involves a…

Well, November 14, you’re here again

Well, November 14, you’re here again

Author’s note: I republish this post every year. So the dates and activities listed may not be current. The sentiments are the same. It’s November 14, again. Comes every year, huh? November 14 is the anniversary of my niece’s death. It was 2008. I remember the month preceding it like it just happened. I remember…

my submitted testimony for the Special Education Funding Commission

Today I testified before our state’s Special Education Funding Commission. This group of individuals has been charged with the responsibility of evaluating the special ed process in Pennsylvania, how it works, how it’s funded, the funding itself and so on. They want to hear from parents and citizens about their experiences with Special Education in…

UN Disability Treaty Convention fails in the Senate~one mom’s reaction

UN Disability Treaty Convention fails in the Senate~one mom’s reaction

If you follow this blog, then you followed our adventure as I took my son to Harrisburg to lobby for special education funding reform. Our bill failed to pass. Why? Politics. Our elected legislators let politics get in the way. That bill had UNANIMOUS SUPPORT and it ended up failing. Yesterday we were all calling…

Our day in Harrisburg lobbying for SB 1115~Special Education Funding Reform

Our day in Harrisburg lobbying for SB 1115~Special Education Funding Reform

Yesterday was such an exciting day for me and Kevin. We were invited to join the Education Law Center and Arc of PA in Harrisburg for a day of special education lobbying. Specifically, we were there to help lobby for Senate Bill 1115. This will just be photos and a recap of our day’s activities….

{BlogHer 2012} Social Good, Swag, Celebrity Haters & my mid-life crisis confirmed

{BlogHer 2012} Social Good, Swag, Celebrity Haters & my mid-life crisis confirmed

Bear with me, I’m going to do a recap of my day at BlogHer, and I’ll try to be brief but want to put it all in one post. First, a bit of background. Earlier this summer, I turned 42. I think it triggered a mild mid-life crisis. Luckily, I haven’t purchased a sports car…

Have I reached acceptance, or am I settling?

Have I reached acceptance, or am I settling?

That is one of my favorite quotes ever, from Randy Pausch. If you haven’t watched his “Last Lecture” I highly recommend you set aside an hour in your life and do so. You won’t regret it. Tomorrow is the anniversary of our D-Day. Diagnosis day. I won’t bore you with a long diatribe about how ours came…