Life With A Side Of Autism


Thursday, April 19, 2018

A Partial List Of The Crap I Can Do One-Handed

Along with having to blog and also write my next book one-handed, I've had to pick up a whole new range of one-handed skill sets. I shower one-handed, fold laundry one-handed (badly, but I do) and a whole bunch of other stuff like:

Putting on socks one-handed. And don't tell me to use one of these things because my brother got me one and they're useless - because they expect you to get the sock on the contraption one-handed first. Its faster to just maneuver it on your foot with a few choice curse words.

Wrapping a towel in a turban after a shower. Yeah, I can do that one-handed, bitches. Fear me.

Wednesday, April 18, 2018

Mostly Wordless Wednesday: Back In The Saddle Again

Getting back to writing every day
Sometimes one-handed
Sometimes with voice recognition software
But always with an audience

Missed you, too, old girl

Tuesday, April 17, 2018

The Great Big Thank You Post

I've been meaning to do this for a while and I feel badly it took me so long to do it but I have a number of people to thank in regards to my rehabilitation.

First, my  neurologist at the University of Kansas Medical Center: Dr. Yunxia Wang, who held my hand and talked me through what was happening to my brain with compassion and calm intelligence as I layed there, scared and weeping.

KU Rehabilitation doctors Schuessler and Eickmeyer,stopped in to see me every morning, remaining positive and upbeat and and celebrating every single one of my successes. I will confess now that I nicknamed Dr. Schuessler “Dr. Dreamboat” and was secretly squealing when he asked for a copy of my book.

My speech therapist Lauren was only with me for a couple of sessions, mostly because as a theatre person I was already doing my vocal warm ups and exercising my mouth, lips, and jaw every chance I got. She still offered some practical instruction and a whole lot of positive support.

Monday, April 16, 2018

A Series Of Fortunate Unfortunate Events

I had a fortunate stroke. I know that seems like an oxymoron, but despite how completely awful it is to have had a stroke at my age, it could have been so much worse.

To begin with, my trip to Kansas City for a family wedding almost didn't happen. I was waiting on my tax refund, not really sure it would come through in time for me to purchase the airline tickets. Lucky for me it did, and we were in Kansas when I had my stroke. Otherwise, it would have been my children's weekend with their father. I would have been home all alone when I had my stroke. My children would have returned from their father's house that morning and found me. Instead, I had my stroke at my brother's home, in front of my sister-in-law, who happens to be an ICU nurse. To go one step further, if I'd had my stroke 8 hours later, or booked the earlier return flight, I would have had my stroke on the plane, sitting next to my kids.

My sister-in-law also happens to work for the University of Kansas Hospital which is where she took me that morning. The University of Kansas hospital has a stroke center -  not something found at every hospital.They also had an open bed in there inpatient rehabilitation facility, also a good piece of luck.

Friday, April 13, 2018

Seven People With Mad Skillz

Do you see this statue? This statue is 'Disillusion' (Il Disinganno) by Francesco Queirolo and dates to 1754. The net is sculpted, too. I cannot fathom that level of skill. Some people are just astoundingly good at stuff. Did you know I can pick up laundry with my toes? And press CTRL-ALT-DELETE with one hand? Being one-handed is pulling out all sorts of skills I never knew I had.

But I digress. You're here to be entertained, so here are five people with crazy levels of skill.

We'll start with this guy and his soccer ball:

Monday, April 9, 2018

Philadelphia's Wells Fargo Center Receives Sensory Inclusion Certification

Philadelphia's Wells Fargo Center is home to both the Philadelphia Flyers Hockey Team and the Philadelphia 76'ers basketball team - as well as thousands of screaming and cheering fans.

Being around that much noise, and movement, the smells from the food vendors, and the flashing scoreboards can make rooting for your favorite team a real challenge for people with sensory processing disorders such as autism.

To better promote inclusion for their fans, Wells Fargo is now offering special "Sensory Kits" for those with sensory challenges. Each kit contains noise-cancelling headphones, a fidget device, a weighted lap blanket, and verbal cue cards. They also have a sensory room where fans can watch the team in a more comfortable, somewhat muted environment.

These accommodations make Wells Fargo is the first arena in Pennsylvania to receive sensory inclusive certification. 

I'm thrilled when I see inclusion at any level, but this will mean the world to so many of those on the spectrum.

Tuesday, April 3, 2018

Life After A Stroke: A Confluence of Irritants

Recovering from a stroke is more than dealing with your useless hand or your shuffling leg or the fact that you can only smile with one side of your face right now. And I got off light! At least the gray matter is intact and believe me, I truly do realize how fortunate that is, especially after sharing the gym with several patients who weren't as fortunate as I was.

Aside from the frustration of bathing and dressing one-handed, and the exhaustion of trying to walk with a shaking and uncooperative leg, there are other factors I never anticipated.

I got hiccups Lots of them. I'm talking twelve to fifteen times a day. It was my brain trying to rewire its way to my partially-disabled diaphragm. A good sign, the doctors said. But soooo irritating.

Monday, April 2, 2018

"What Is Autism?" A Film Written By People On The Autism Spectrum

It's World Autism Awareness Day, and if you want to know what autism really means, you should go straight to the source.

Friday, March 30, 2018

The Frightening Food Gallery Of Horrifying Hospital Cuisine

Hospital Food. Two words that strike fear in the hearts of mere mortals, and for good reason. I've done some research on the subject, and while some places have truly lovely hospital food, this wasn't one of them. I've received excellent care in this place, but the food . . . oh God, the food . . .

This was one of my first breakfasts. I ordered wheat toast, peanut butter and banana, and I was kind of looking forward to it. What I got was a soggy, plastic-wrapped piece of previously toasted bread, peanut butter, and an unpeeled orange because they ran out of bananas. An unpeeled orange. For the girl with one working hand.

This is 7/8 of a mostly-burnt pizza. I don't know why it's shorn off. It is possible it was used as a weapon, perhaps against demons.

Thursday, March 29, 2018

Now Comes The Hard Part: Stroke Rehabilitation

That very next day, I met my team. I had two doctors - at least one of whom checked in with me every morning to check me over, update my status and listen to my concerns. I had a physical therapist with cats named after Harry Potter characters to help me walk, an occupational therapist with the world's smartest dog to help me regain use of my hand and arm and a sweetheart of a speech therapist to help me regain my diction and clarity.  I had a psychologist with the kindest soul, and a social worker who rode herd on paperwork for my insurance company and located outpatient therapy for me back home for when I returned. I had a nutritionist who talked diet and meal planning and a recreational therapist who invited me to group events. I had a nurse and an aide on every shift, and they were all terrific.

Anna and David were making do but it was a lot of stress on Anna. She couldn't hang at her father's house as much due to her part-time job (he lives over an hour away), and her course load of AP-level classes this semester is brutal. She was alone in the house a lot more than I would have liked, but there wasn't a lot of choice, really. David was managing okay once he got used to the new normal. That first week or so I limited our daily contact to texting only. When I said goodbye to the kids the day of the stroke, I wasn't doing too badly. I didn't want to frighten them with how much worse I'd gotten. But we talked and we joked as we texted, and my sister-in-law, neices and nephews all came by to lift my spirits.

Wednesday, March 28, 2018

Mostly Wordless Wednesday: My First Visitor

His name is Escobar
"Eskie" for short
And he's a sweetheart
I'm really tired, I say apologetically
But that's okay with Eskie
He climbed right up and cuddled right in
I even managed to shift my useless arm
and lay it against him
The first time it's moved in two days
Thanks, buddy
You're just what I needed

Tuesday, March 27, 2018

Riding The Strokercoaster

I woke Tuesday morning, and I couldn't coordinate my thumb to touch any of my fingers on my left hand. My leg felt heavy, clumsier, and my mouth was sluggish, like talking through marbles. But I could still walk, if wobbly, raise my arm and even clench my fist. Cognitively, I was still hitting all the marks, so while I'd moved up the stroke scale from a two to a five, the plan was to release me to outpatient therapy.

The hospital sent a social worker to discuss my discharge. Who is flying home with you? she asked. No one, I answered. And who will be staying with you to help you while you recuperate? No one. Can you call someone who will? No, not really. But you just had a stroke, she said. And I'm a single mom with no family around me for a thousand miles, I replied. It is what it is. She recommended that I get a wheelchair escort to and from the airport gate since fatigue would make walking that far problematic, and then they released me.

Monday, March 26, 2018

So . . . I Had A Stroke

Wish I had a catchier title.

Actually, I wish I had the most mundane, boring title out some everyday part of my life because that's all the news there is, but it didn't shake out like that. Three weeks ago today, I dodged a bullet - or rather, got grazed by one.

Tuesday, March 6, 2018

We Belong To The Light, We Belong To The Thunder - My Daughter & Me

[Special Note: This post originally ran in December of 2013]

God help my daughter when we're in the car and the radio station starts playing eighties music. She is not permitted to change the station under penalty of me singing a whole lot louder.

So the other night when she happened upon Pat Benatar as she was tuning the radio dial and I said (okay, screeched) Stop!

Monday, March 5, 2018

Meet Matthew And Matthew's Mom - Who'd Like To Talk About Autism Stereotypes

I've highlighted this wonderful YouTube channel before and I'm going to do it again. SBSK (Special Books by Special Kids) tells the story of people dealing with conditions and disabilities, giving all of us a chance to virtually "meet" some awesome people. Matthew is one of them, and very much like my own son, David, in that he's a super-friendly and outgoing kid - something that people with autism are often assumed not to be. Check out Matthew's story (and you might want to subscribe to SBSK while you're at it)!

Thursday, March 1, 2018

Temporary Hiatus

Hi everyone - stepping away from the blog through to next week because I'm hanging with my family for a big family wedding this weekend. Catch up with you next week!

Tuesday, February 27, 2018

5 Terrific Appetizer Recipe Gifs

Okay, I'll admit it - I'm totally hooked on recipe gifs. These quick how-to guides make it super simple to whip up whatever it is they're showing off (and they always show the link to the full recipe at the end). And of course, I'm sure mine will totally look exactly as nice as theirs, right? Right?

Oh well, it'll taste good at least. You have to be selective with some of the recipe gifs circulating out there. I swear more than half of the dinner recipe gifs have cream-of-whatever soup as their main ingredient after the protein. Makes me crazy. And half the dessert gifs have cream cheese (which I happen to like) but it does get tiresome to see so many of them.

That being said, I've got a bunch of these that I've actually tried and can give my stamp of approval to. Today, the appetizers! Check 'em out!

This one had my mouth watering: Garlic Parmesan Pretzels

Monday, February 26, 2018

These 5 Companies Offer Adaptive, Sensory-Friendly & Special-Needs Clothing

Having a child with sensory or medical issues can be a real challenge when you're looking for clothes that (a) fit, (b) look good and (c) don't make your kid squirm because they itch or pinch. Here are a few companies who are making it easier to dress your special-needs kid.

Did you know that has an entire shopping department for adaptive clothing and shoes? One of the companies featured is Independence Day Clothing, with elastic waist pants that are easily disguised, pants that can be worn front or back, and super-soft items for those with extreme sensory issues - and their sizes go all the way up to adult!

The Cat & Jack clothing line at Target is an inexpensive and fashionable way to clothe a child that struggles with buttons or zippers, or has things like a G-tube to work around or special sensory needs.

Friday, February 23, 2018

Time For Another Edition Of "What The Hell Did I Just See?"

It's another group of freaky pictures that I've collected! What the hell am I doing with my life, you wonder? Well, the truth is I'm a writer, and we're great on procrastination. And you get the joy of the fruits of my labors! So sit back and prepare to scratch your head or possibly recoil in horror at this latest group of "What the hell did I just see?"

When a Face-Swap goes wrong.

I'll take the elevator, thanks.

Thursday, February 22, 2018

The Power Of One Touch

[Special Note: This post originally ran in November of 2011.]

He was eight simple cells when I first saw him, through an electron microscope.

We went to the doctor’s office that day to have the embryos from our invitro fertilization implanted, and the microbiologist asked us if we’d like to look. Would we! I stepped into the back room and stared at the screen where the microbiologist brought up the eight perfect circles that would eventually, hopefully, become my baby. I reached out to touch the outline of those circles and I remember saying “Come on, baby. I’ve waited my whole life for you. Don’t make me wait anymore. Your sister wants to meet you.”

Five months later, I sat in another doctor’s office, my fingers touching and tracing a tiny printout of my baby. My baby boy, I now knew, and I couldn’t stop my fingers tracing the shape of his head, the way his hand reached up like he was already curious about the world around him. My finger lingered on his hand and I remember thinking I’d be holding it someday.

I lay in bed a few months later, unable to sleep. It was that last hellish three weeks before the due date, and sleep came in 20 minute snatches, interrupted by kicks and prods, heartburn and bathroom breaks. My hand reached down to touch my distended stomach, gently pushing, and I smiled in the dark as my little somebody pushed right back, against my questing fingers. “I love you,” I whispered. And I knew he loved me too. I knew it.

Wednesday, February 21, 2018

Mostly Wordless Wednesday: Fire Drill

She was late for the bus this morning and I had to drive her to school
I was grumpy about it, too
I barely spoke to her at first 
I was angry that she dawdled in bed too long 
Then she said quietly
We had a fire drill yesterday, in the morning
And then something went wrong
I made a non-committal noise in reply, and she went on
In the afternoon, the alarm went off again, for no reason
It was a glitch, but it scared us all so bad
We'd already had the fire drill, she explained
So nobody knew why the alarm would go off again
We thought maybe somebody had a gun
Teachers made us stay in the classroom while they checked  the hall
Some kids were holding each other and I was hyperventilating
Everyone was upset and wondering if this was it
 But it was just the alarm? I clarified.
Yeah, just the alarm. We were so scared. 

I am scared. And I wish I could have driven right by the school and kept on driving, with her in the car next to me. I wish we could spend the day together, because I'm suddenly wondering how many mothers have dropped off a kid at school and never heard them talk about their day again.

Tuesday, February 20, 2018

When You're Taking A Picture Of Cat Poo For Facebook, You Know You've Gone Too Far

[Special Note: This post originally ran in November of 2012]

Ah, the weekend. I can sleep somewhat later (why is it my kids can't wake up on weekdays, but the slightest touch of sunlight to their eyelids on a weekend, and they're ready to bounce off the walls?) and everything's a bit more relaxed. I headed downstairs this morning only to be greeted halfway down the stairwell by a tell-tale stench.

Monday, February 19, 2018

Not Doing The Brain Thing So Good Right Now

Guys, I am seriously brain-numb right now. I had an author event yesterday, I'm under a massive deadline for my next YA book, and I'm going away for a family wedding in two weeks so I'm scrambling to get this book rewritten before then. I feel like I've got a constant fog around my head and the idea of coming up with something new and entertaining right now is enough to make me want to mash my head into the keyboard.

So I'm calling for mercy from the blogger gods this week as they see me to my deadline and I leave you with some reruns. I know you understand me when  I say I can't brain this week. I just don't have it to spare.

Chat ya next week and wish me luck (and brilliance)!

Friday, February 16, 2018

All Signs Point To Friday - Check Out This Hilarious Collection!

Running a little behind this Friday, but better late than never, right? Anyhoo, here's a collection of signs that made me laugh. Hope it works for you, too.

We can't risk another frontal assault - that goose is dynamite!


Wednesday, February 14, 2018

I Wish This Wasn't So True


Monday, February 12, 2018

Autism In The Workplace Is Becoming More Easily Accommodated

Photo Credit: CBS

 A friend clued me in to this wonderful article featured on CBS: The Growing Acceptance of Autism in the Workplace follows various people on the spectrum and the companies that employ them, highlighting their specialized interview strategies and the shifting focus of their training programs.

All the companies went out of their way to make the interview process less "talking" and more action oriented (such as giving them the "marshmallow challenge" (pictured above) and taking them through real-world scenarios to demonstrate skills the candidate may have difficulty describing or talking about.

Employers are truly beginning to realize what an untapped market the autism community offers, and they're discovering an entirely new and vibrant talent pool - and it's about time!

If you're an employer and you'd like to know more about the hiring and managing of people on the autism spectrum, The Autism Research Institute has a tip sheet that may be of help, and offers a printable pdf guide for the successful employment of people on the autism spectrum.

People on the spectrum can bring so much to any organization, with just a little patience and creative management. I hope this trend continues, and we see companies reassessing their interview and management techniques for everyone.

Thursday, February 8, 2018

10 Great Things That Other Countries Do

I'm generally proud of the land I live in (current government leadership notwithstanding), but I'm also fascinated by the customs, laws and culture of other countries. I've collected some of my favorites and thought I'd share them with you today:

1. In Finland, every newborn baby is given a "baby box" by the state. It includes clothing, blankets, a snowsuit and mittens, diapers, bathing supplies, a picture book and a teething toy - along with nursing pads and condoms. The box also doubles as a sleeping crib!

2. In Barbados, everyone citizen who turns 100 gets to be on a postage stamp.

Tuesday, February 6, 2018

It's Okay If I'm Not The Memory Maker

Superbowl weekend was Dad's weekend with the kids - which translated to Dad's weekend with Anna because David had been invited to spend the weekend in the mountains with his best friend. My ex is a die-hard Eagles fan, being a life-long Philly area native, so this was one hell of a weekend to be at Dad's house.

I'm not much of a football person, but I did have the game on in the background while I was writing (mostly because I love Justin Timberlake and I wanted to see commercials). After the win, I was texting Anna and I asked her what the noise level was like over there. She replied that everyone was losing their minds, and she and her Dad and all her friends over there were chanting E-A-G-L-E-S and singing the fight song and it was amazing.
I love it. I love it so hard that she was in the middle of all of that. I texted back: MEMORIES with a big heart emoji. Oh, it was awesome.

And once again, I'm reminded of how far I've come.

Monday, February 5, 2018

"How To Dance In Ohio" Gives A Warm And Insightful View Of Teens On The Autism Spectrum

I was wandering around YouTube this weekend and I came across this outstanding short film. How To Dance In Ohio is about a group of teens with autism, preparing for their spring formal - a rite of passage for many teens, but for teens with autism, it can be a sensory bombardment and a social skills nightmare. The film addresses so many of the challenges they (and their teachers and therapists) face as they navigate this milestone with courage, compassion, and a touch of humor.

Check out the trailer:

And if you're interested in seeing the full film (it runs just over an hour), it's on YouTube in its entirety here.

Friday, February 2, 2018

Fun On A Friday: Time For Another Edition Of "Today In The News"

It's Superbowl Friday, guys, and my local team is in the playoffs. This is how I know it's Superbowl Friday, because I do not watch football but apparently everyone else within a hundred miles of Philadelphia does. So . . . Go Eagles!

There. I did my part. And now, on to the news.

So glad this was resolved without violence.

Tuesday, January 30, 2018

These People Have Mad Skillz - And In Great Variety

I know what you're thinking. You're thinking, "Ellie, it's a frog." Nope. That, my friends, is a carving of a frog - chiseled and shaped out of red agate, to be precise (click on the pic to see all the detail - it's amazing). The artist is Gerd Dreher, and you can see some of his other work here

I'm always astounded by anyone with that level of talent, and that doesn't just apply to art. Here's a smattering of people (and non-people) with some mad skills that I find particularly impressive.

This is a sand sculpture:

Monday, January 29, 2018

Many Museums - Including The Smithsonian - Offer Special Hours For Kids With Autism

In 2011, The Smithsonian complex of museums began opening its doors 90 minutes early for children on the autism spectrum and their families. Groups are kept small and structured (so that while the museum exhibits can change, the structure of the program remains the same - small group activities, demonstrations, etc.). Lights are slightly dimmed, and sound is turned off on many interactive exhibits that feature a noise component. With smaller groups, there are not bustling crowds to navigate and no uncomfortable waiting in lines. 

The program also provides a visual storyboard of the schedule, a tip sheet with parking, restroom maps and basic sensory information for parents. They also set up a break space on the concourse level filled with large mats, pillows and sensory toys like fidgets and stress balls.

Friday, January 26, 2018

"Presented Without Comment" - Pictures & Gifs That Leave You Scratching Your Head

Sometimes in my internet journeys, I come across a picture or a video that either defies explanation, or just plain doesn't need one but I'm transfixed by it anyway. I like to group these together and present them without comment - mainly because I'm a lazy blogger.


Thursday, January 25, 2018

With A Special-Needs Child, There's A Lot Of "If"

This morning, I started my day with my son's yearly IEP meeting. For those of you with not-special-needs kids, that stands for Individualized Education Plan. Once a year, David's father and I meet with his teachers and therapists to discuss his progress, his challenges, and the support services he will be receiving to help him succeed and meet defined progress goals.

We used to do this without David, but since he turned 13, he's now required to be a part of them, though it mostly seems to swirl around him in a jumble of words. He knows he's doing good, he knows he needs to work a little harder at some things. But this year, we added a new element: life after high school.

David starts high school this fall. Holy cow. David starts high school this fall.

Wednesday, January 24, 2018

Mostly Wordless Wednesday: The Fragility Of Mobility

When she was a baby, she didn't walk
She went straight into a run
No hesitation
Just pulled herself up, pushed our hands away, and zoom
She was the toddler at the beach
Who ran into the waves
Always ready to go, this one
Now she's met the milestone
And the license is in her hand
The world is out there
As she pulls out of the driveway
I try hard not to think
That it won't be long before she truly gone
Wind in her hair
Eyes firmly forward
As she goes
There ought to be a word
For a certain grieving joy

Tuesday, January 23, 2018

These Are My Favorite Addictions - What Are Yours?

Everybody has their things that they just can't get enough of. Sometimes it's harmless, and sometimes it's darker, but we all have our addictions. Today I want to talk about the (mostly) harmless ones. Here's a list of some of the things I can't stay away from:

Frosted Cherry Pop-Tarts. These are a staple in my house. Yes, they must be frosted. And they must be "Pop-Tarts" brand. Anything else is a waste of time.

Stargate: Atlantis. I like original Stargate as well, but Atlantis has more snark, more interesting villains and most importantly, Momoa. This is my go-to "I'll just put this on in the background while I do whatever important thing I won't end up doing because I'll be watching Jason Momoa kick a Wraith's ass."