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Some of you may have caught my recent Facebook post where I implored local haunt-enthusiasts to please skip Pennhurst Asylum’s haunted attraction.

Pennhurst lacks no evidence of its otherworldly activity. The weight of sadness that patrons experience can be overwhelming. Countless “ghost hunts” have taken place on the historical premises, documenting thousands of events. And long before the facility closed its original operations, this heartbreaking documentary was filmed:

In this article by the Inquirer, you can see a detailed account of just a fraction of the institution’s horrifying history. Not that long ago in our history, persons who were deemed “less than” were stowed in facilities like this. They were considered an embarrassment, a burden, and not fit for society. Parents were encouraged to place disabled children in homes where they would be appropriately cared for. However, that was rarely the case. Facilities were dramatically overcrowded, understaffed and what staff was present was poorly equipped to care for anyone, let alone medically complicated patients. Doctors routinely performed experiments. Patients could be restrained constantly.


Some of the articles state that patrons of the haunted house attraction aren’t put off by it because the “atrocities didn’t happen in the areas they’re walking through.” That’s like saying its ok to be disrespectful in a courtyard of Auschwitz because the atrocities didn’t happen right in that area!

Pennhurst and other “schools” and “homes” for disabled, criminally insane, mentally unfit, and the like, speckle the history books with an embarrassing history of mistreatment. Mental health is a waning taboo in 2019, but is still a touchy topic that requires sensitivity. The real issue at hand is that there is someone capitalizing on this mistreatment. I won’t sit here and be some ridiculous mouthpiece for reparations or some other penance. A preserved, respectful memorial to those who were mistreated and lost their lives would be well more than enough.

Credit: Antiquity Echoes

In the discussion the other week, it was mentioned that, despite astronomical profits topping over a million dollars a year, none of it was donated to further services for the disabled. When facilities like Pennhurst began to close due to understaffing, overcrowding, and general misuse, the burden was again placed on the families, with little support offered. My own family has benefited from Early Intervention and Intermediate Unit services, but it doesn’t truly offset the heavy responsibility of caring for a child with any type of disability. Since I worked from home, I was not eligible for any type of respite care – one would think that a mother who is solely responsible for a child 24/7 would be the first to qualify for a break, no? Apparently not. Childcare services require you to be below the poverty line. Daycare’s require one-on-one aides that you have to conjure up (good luck with that; we are still waiting 5 months later). Leaving your child with someone requires an inordinate amount of trust in someone to understand your barely-verbal child. Friends who’s children have meltdowns and outbursts require caretakers who have mountains of patience and who are equipped to handle these incidents. Institutionalizing my son would have absolutely never been an option for me, but I can certainly understand the societal pressure to do so.

Now, all of that said, if the current owners of the Pennhurst grounds were to donate at least a large portion of their profits to improving services for the type of patients Pennhurst once housed, I could stomach the profiting off this tragic era much better. It still wouldn’t sit completely right with me, but I would feel better knowing that perhaps the entire state of Pennsylvania’s special needs care system would fare much better, as a tribute to its tragic history.

More reading on Pennhurst Asylum:

Pennhurst Memorial and Preservation Alliance

NPR: Haunted House Has Painful Past as Asylum

Philadelphia Inquirer: Thrills or exploitation? Pennhurst Asylum open for haunting season

Trigger warning on this article, but very well written piece by someone on the spectrum: PAranormal (and True) Crime

A&E To Premiere Record-Breaking Special On Pennhurst Asylum

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Some “Rules” are Meant to be Broken

Recently, I was made aware that a local school district is using the juvenile novel Rules as required reading for the third grade classes to raise awareness about autism. Of course, being the advocate and mom that I am, I needed to get a copy and find out why there was such an uproar. People were posting horrifying snippets from the book that are anything but tolerant, accepting or aware.

“I study the hair on the top of his head. How can his outside look so normal and his inside be so broken? Like an apple, perfect on the outside, but mushy brown at the first bite.”

Rules, by Cynthia Lord

This is the protagonist, Catherine, referring to her eight-year-old autistic brother. Her brother is not severely autistic, by any stretch. He speaks clearly, can tell time and do higher functioning math than I certainly can, functions fairly normally, but enjoys many of the quirky things that most kids on the spectrum enjoy – repetition, stimming, routine.

Rules by Cynthia Lord is an eloquently written book, with beautiful, flowing imagery. Its brought to life by a vibrant, talented twelve-year-old, Catherine. My impression within just a few pages was that she is very bitter young woman. She’s expected to take on a lot of responsibility with a younger sibling who requires a lot of attention and understanding. The responsibility of a child on the spectrum can be daunting for a grown adult, hence why we witnessed atrocities with “different” children being abandoned for so many decades prior.

Several passages through the book disturbed me, as a mom of a quirky little guy. However, I do give Lord credit for some passages that I related to, deeply. Moments where you see the unbridled beauty of the autistic mind; moments where you don’t think you could possibly ever understand how he’s thinking; moments where you just want to take it all away, and just have “normal.” There’s so much about my son that would still be him without the hinderance of developmental delays. If I took away his inability to understand others and express himself, he would still be Nicholas, he’d just struggle a lot less day to day. He’d still be my quirky goofball, sensitive, hilarious, adorable.

Through David’s occupational therapy (OT) sessions, Catherine happens to meet a young man named Jason (I’m making some assumptions on his age – she guesses he’s older than her, but its never stated), presumably with cerebral palsy. Its never clarified why he’s in a wheelchair or needs his communication book, but he’s clearly “different.” Catherine has a hard time embracing it. She’s definitely embarrassed to have befriended this delightful young man, and it arises several times during the book. She makes efforts to conceal how David and Jason “are,” as though they’re defective. I am pleased to say that by the end of the book, she seems to make peace with both David and Jason being different, but the end is barely the tip of that iceberg.

However, my biggest concern is that all but the last few pages are her utterly bitter, angry, pre-teen angst combined with overwhelming responsibility, and a major lack of awareness and understanding, coming from Catherine and the kids in the neighborhood. Instead of spending the majority of the book “normalizing” or heck, just accepting the not-normal, the book spent almost the entire length avoiding the topic. Instead of Catherine stepping up and making it “ok” to be different, she literally spends all but the last few pages being deeply embarrassed by both boys. A neighborhood boy is downright cruel to David and then proceeds to attempt to influence Catherine’s new neighbor to do the same. Fortunately, the new neighbor, Kristi, has her own issues with her parents being separated, and is bewildered by David enough to not form a clear opinion on the topic. She is the most flexible character in the book, knowing she’d like to make friends, but also clearly destined to be one of the popular girls, once school starts again in the fall, regardless. Kristi seems to be open minded but not given guidance on how to approach David or Jason.

This is an important part that Lord failed to capitalize on, in my opinion. So much of her story was focused on how the parents were truly failing both kids that she took no time developing the tolerance and acceptance lesson that could have been threaded through the entire book. There is no sequel that I am aware of – another major missed opportunity. By the end of the book, Catherine had developed an “it’s OK” attitude, but it took nearly 200 pages for her to arrive there. Her father finally stepped up to take care of her brother in the last few pages. She finally enjoyed her friendship with Jason without feeling embarrassed that he’s in a wheelchair or different. She was finally thinking positively about her brother. But these are all missed opportunities to teach and learn true acceptance.

Lord’s writing style is beautiful, to be perfectly honest. I would enjoy reading just about anything by her, even as an adult. It took me back to my childhood, when I consumed books voraciously, and lived vicariously through characters who had exciting, interesting lives. I’m disappointed in her overall message of the book, as I feel she could have done a more extensive job, but in general, not a horrible book. I am, however concerned that school districts are trying to use this book for any type of awareness or acceptance, because I feel it desperately misses the mark. This might be excellent for someone who is experiencing autism from Catherine’s perspective, but it will hardly be helpful for someone who is experiencing it from a distance and already doesn’t know how to relate!

Let me hear what you think! Have you read this book?

Much Love

~ Jess

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I Must be the Village Idiot

We’ve all heard the phrase “it takes a village to raise a child,” right? You’ve probably even heard me champion in favor of bringing back the village. Lets face it: “Judgement Culture” is the ~thing~ nowadays. Its soooo much more entertaining, fun, easy, and profitable for your social media algorithm to just film and post a kid freaking out. I’ll always say it: I’m INCREDIBLY lucky that Nicholas doesn’t melt down like most kids on the spectrum. Its still not easy by any stretch, to raise a kid who literally doesn’t understand. He’s got the attitude, size, energy, and issues that a regular five year old has, but lacks the understanding and awareness. Just yesterday, while I was messaging with a classmate about our upcoming test and we were sharing notes via text, he managed to roll his stroller into traffic while I was just out of sight. I know, any kid can get into major trouble in the two seconds a parent looks away – but not every kid will get the eye-rolling-why-doesn’t-she-spank-him judgement that comes along with his bloopers.

Lately, with school, and just general exhaustion with life, I’ve been feeling like the village idiot, though. We want this group of friends who can rely on each other but can’t find it! Most moms in my age group talk about wanting the village. But our schedules are jam-packed. We live too far apart. We’re terrified that we will get taken advantage of by “that mom” who always dumps her a-hole kids but never returns the favor. Our parents aren’t able or willing or local to help shoulder some burden, or “they already raised their kids” and aren’t interesting in contributing again. Our schedule is so crappy with work or school that we’d always be leaving our kids with someone and never able to return the favor. Or we don’t know anyone we trust. Or we are so burnt out, we threaten to leave our kid on the side of the road with a hitch hiker, and still, no one is capable or wants to handle our kids for a few hours. Or maybe the only people able to help, do, and you’re tired of feeling so guilty for even asking anymore.

Either way, this sucks, doesn’t it? And as a really single parent, I don’t get a weekend off. I’m not talking about the married women who manage kids “alone” but have their spouse’s income and occasional physical presence. And if that offends you, get divorced and continue that life without your ex supporting you in any way, and then lets talk again, mmmkay? Its. Not. The. Same. and I will not even entertain the discussion. I’m even jealous of moms who get every other weekend child-free, honestly. Embrace it and enjoy it. I’d kill to know I can regularly send my kid someplace safe, and I don’t have to feel guilty for asking!

He hated riding in a stroller, but pushing it around occupies him now.

Its been a wild few weeks – these short semesters are not for the faint-hearted! Six intense weeks, and my brilliant a$$ decides to take science classes that include labs! So during this short break between semesters, I wanted to take some time to address these topics that have been eating me alive, having returned to school for the first time in nearly a decade.

This time around, I’m not just a mother, but a single mother with limited help. That’s not to say my mom and friends haven’t pitched in when I’ve been desperate. But can we be real for a second here: through the KEYS program, based on my income, we are eligible for at least a portion of daycare (if not all of it) covered; as of 8 weeks into my search, I am still unable to find anywhere that has space or can “accommodate” him. Let me rephrase: thanks to the somewhat hard-to-qualify-for government program for people who are actively working towards a stable, welfare-free income, we are eligible for PAID childcare, but there isn’t anywhere I’m able to send him.

Guys, if this ain’t the “rub,” I don’t know what is. Life is always a series of roadblocks, isn’t it? This just particularly twisted my niblets though, because there’s such an intense disconnect between the need for an education and the ability to obtain it. Its just like the “you need experience to gain experience” dilemma. I need childcare to be successful in school, but there aren’t any aides available till the end of August. He starts full-day kindergarten the last week of August!! Any student will tell you, being interrupted every 3.2 minutes is not conducive to learning or retaining a darn thing. Now, on top of being interrupted more times than is humanly imaginable, pile on constant noise, movement, frustration, and the extreme desire to be somewhere else (me too kid, me too). Its absolute insanity. I get two, 4-hour blocks each week for my truly “child-free” time. I mean, its spent in a classroom and occasionally I’d swing by the grocery store if class let out a little early…. if we are really considering that to be a huge boon to my education.

I’m not bringing all this up to make anyone feel guilty (although, if the shoe fits, lace that bad boy up). We do an absolutely horrific job of supporting each other, particularly mothers and fathers who shoulder more than 50% of the parenting burden, and then rub each other’s nose in the fallout. Rally around each other. Contribute however you can when someone is struggling. We’ve been trained to be stingy when we feel desperate and in need; instead, I propose we start giving more. Find little ways to help someone out, even if its only making them feel a little better about themselves.

Something I read the other day that spoke to me: when we are not getting what we want or not getting it fast enough, we need to start contributing more. Sprinkle compliments like the rain that won’t stop falling. Write someone a thank you note. Leave a genuine compliment on someone’s facebook post or their selfie, because you know they took 50 and deleted 49.

Sometimes, all we need is the sensation that someone is looking out for us, and we are all capable of providing that without breaking a single promise.

Have a sparkly Independence day, friends! ~ Jess