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…

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…

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…

How To Write a Parent Concerns Letter for your IEP that Gets Noticed | Templates

How To Write a Parent Concerns Letter for your IEP that Gets Noticed | Templates

How to Write IEP Parent Concerns. I’m going to wag my finger at you–from this day forward, you do a Parent Concerns Letter for your IEP. Every.single.time. No more “Well I didn’t know…” or “I didn’t think I had to do one each time…” Now you know. Do one. This is one of the most…

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…

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…

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…

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…

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…

{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…

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,…

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…

{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…

{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…

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….

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…