23 October 2014

Open Letter to Stampylonghead From a Special Needs Mom

special needs, videos help, stampylonghead helps special needs kids
One of many fan memes I found - I'd add an apostrophe if I could.


Dear Stampylonghead,

I first thought you were a video game called Stampylonglegs but now that I've gotten to know you better through my son I get it (and your proper name). You are a person who talks about Minecraft while playing it on YouTube videos.

You're a rockstar in this house, though and I think you should know about the life you've touched with your videos.

Our son Tristan has special needs. He has SPD (sensory processing disorder) and is undiagnosed with possibly autism, anxiety or ____. We don't know yet but he is very much a puzzle piece. He can't communicate much or answer most questions.

Last August he found your YouTube Channel, and a new part of him opened up. He plays games on his Kindle but all of a sudden was wound up in videos of Minecraft (those have to be watched on the laptop). In September he started going to preschool at a special needs school. When he came my husband was there with me as he got off the bus. He told us "friends" "bus" "no push friends" and then ran for his Kindle. He held it up to Papa and said "STAMPY?"

You see, he'd been wanting Minecraft but he's only three and we didn't think he'd understand. I told him that maybe if he asked Papa he'd get it for him after his first day of school - and he remembered.

Papa got him the game that has never been called Minecraft here. Just Stampy...and he understands it! ...in his own way.

He runs through his worlds lost in deep thought. Other times he narrates what he's doing with 'stampy'. "Yes, Stampylonghead...[and then I can't understand], that's right".

Whatever it is about your videos, your voice, your inflection when you speak. you've reached him. I don't doubt that you've reached many children (with or without special needs). But the thing about it is...do you know how special that is? Do you know how much we appreciate you? I don't know what you look like or how to play Minecraft but he shows me sometimes. He asked for your firetruck video the other day and explained as best he could along with you.

Tristan wants to be a firefighter. He doesn't know that he was born prematurely (at 30 weeks) and lived in NICU for two months. Our house had burned down and my body couldn't hold up to the stress (my cats were lost along with everything we owned). Maybe some part of him knows, though, because during his rounds in a firefighter costume he told me "reshoo people an cats."

I think you also make a cake in that video which is his favorite food other than pizza.

My husband plays games with him. I've let that be their thing together. I'm more of a Limbo-girl anyway. I had seen Minecraft things at ComicCon in the past never thinking it would become such an intricate piece to unlocking my son's thoughts. How could I especially because I don't think it's the game alone - it's equal (if not more) the life you have given to it.

The voice.

I don't know anything else about you; what you look like, what got you into making videos, or what your favorite food is, but I do know you change lives. Maybe that's something you didn't know. You are loved by many that's for sure (hello meme/fanart!)...but this is deeper. You've reached a place in my son's brain that most things and people can't get to.

We thank you for that...with all of our hearts.

Tristan is at school right now but he'll be home in a bit, asking for Stampy and showing us how creepers and zombies walk. That's really funny to watch him mimic but you can't laugh because Stampylonghead is to be taken seriously.

Kindly,
Stephanie and Brandon


09 September 2014

Zombies Not Dead: The First Morning


I'm binge eating crackers and drinking diet cola in hopes of quelling the migraine spreading across the right side of my face. You've been in school for 53 minutes now and gone from me even longer. We sat on the front steps waiting for the bus to come at 12:03. It was a couple minutes late but we didn't mind.

You had your worst nightmare ever some time after I got up. I was having my coffee and figuring how long I should let you sleep when you came out hysterically crying telling me that "zombies are dead." I said, "that's true, they are." I'm still not sure if you realized they were living dead or if one had re-died...you couldn't tell me...but I got us both ready with one arm with your arms flung around my neck hysterical over the zombies.

Last night you ate a whole cheese pizza minus two slices. One for me, and one for you that I hid in your lunch box just in case you don't like the food they serve today, though I hope seeing other kids eat different things will encourage you to try as well. It was really hard hiding that slice. Papa and I didn't know how hungry you were after your busy day at OT at CHOP.

"Big big big bigger pizza!"

"I sad. Papa not feed me. Pizza bigger pizza!," you wailed until well after 2 a.m.

Honey, I promised we'd order a large next time. Who knew a little one could eat so much pizza - but it's just as likely that you won't want any next time.

You're tricky like that.

You have your dinosaur backpack from Grandma'bama. I hope I packed it well. You chose to wear a raptor shirt from Gramma--that will make her happy. Underneath it you wore your dog-in-a-tie shirt because that is your favorite.

Your shorts are new but that's one of the many special things about you - you find comfort in the familiar.

I took a few photos but they were just candid selfies. Real moments. When you're older most of the kids you know will have photos of themselves holding a chalkboard with a number. That's very trendy right now. I don't have a chalkboard but maybe on a day you're feeling better we can come up with something quirky.

The bus pulled up and we did it quick like a band-aid. When I was a teacher I always thought that was best to start out. It's harder when the shoe is on the other foot but I still wanted to give you over to your own independent routine.

This past week I have pondered nature versus nurture a lot...when you come home it will be the first time you've done something completely on your own with other children. What will you pick up? What will you share with others? There are so many new things entering your personal space now.

We'd planned to homeschool - and maybe that's still part of the future - but right now Papa and I are happy that you'll be in a school with other children similar to you, with teachers and therapists trained to work with special needs.

You're our brave boy - from the moment you fought to stay in me for another month after the fire until you came out fighting against my contractions. We know you'll keep surprising us - how? That's the mystery yet to unravel.

Love,
Mama

P.S. I have been bracing myself for you to start calling me Mommy and warned Papa he might become Daddy since that is what most children call their parents and the terms teachers use. It's a particularly hard thought since you just started saying our names consistently over the last few months...but I've treasured each time and tucked them away in my heart to save forever.

"I lub you, too, Mama."
I love you, too, Buggie.

31 August 2014

Friendship and Addiction



It's interesting where you can find answers to unspoken questions. Buffy and Oz both spoke to me last night. Not the characters, the shows: Buffy the Vampire Slayer and Oz, that prison show about Emerald City; Augustus spouting off in his spinning wheelchair. ...not Seth Green's Oz, though he has some great lines.

I lost a lot of online friends recently when I left Preemie Pen Pals, a group I've written about on here. I founded it exactly three years ago on 25 August, according to Google and open internet boards. That's probably why it's been on my mind even more over the last few days. Each year I'd post a Happy Anniversary and we'd all reminisce about how far our preemies have come - as well as us.

We talked about being friends forever and growing old together. I believed it. However behind the scenes I had a conflict and rather than calling this person/s out I decided to move on. Was that the right choice? That's the thing about life - there is no right choice. If you've ever seen the indie movie Sliding Doors, I often compare it to that. You have to make choices and live with the consequences and wonder what would have happened if you had moved a little faster that morning and caught the train instead of missing it?

It's like moving. Something I've done too much of. It was a method I picked up in my teens and carried on until settling down in Philadelphia six years ago. I don't know if this will be our forever home, but I know we won't be running away from something if we move - we'll be running to something. Reasons.

When I first moved it was in high school. I was 14 and had lived in the same house for as long as I could remember, watching the sunset behind the palm trees from the hilltop never considering it could change. I was happy in that world with the lemon tree out my window delivering enough lumpy fruit to leave me not wanting lemons. Violets under my feet. Hummingbirds in the trees.

I'd known the same faces since preschool even if we weren't friends anymore...we were still acquaintances. I drifted from group to group but in junior high found a core group of friends that I'm still in touch with today even if it's brief interactions and glances online.

Friends change...rearrange.

What keeps a friendship together and how do you know a real friendship from an acquaintance? Does it matter? ...how can you recognize the overlap between the two? I always found out who my real friends were by moving. They were the people that circumstances didn't dictate. But as humans we find comfort in relating to others if even in the moment...and that's what I've been pondering lately: why was I upset to lose friends who were merely acquaintances/time-period pals/circumstantial buddies? Why did it hurt so badly to make a choice that was truest to myself?

Then last night as I was working and listening to Buffy, just like every night, I picked up on a conversation between Willow and this wretched guy sweet Buffy hooks up with in college thinking it was something it wasn't (because all she'd known was sincerity and love in Angel). But, in part of his explanation to Willow, I thought, that's it! That is the answer!

Some relationships center on a deep emotional tie or…a loyal friendship or something.
(beat)  
But most are just two people passing through life, enriching or aggravating each other’s lives briefly.

So that explains that. I got a lot from them, they probably got something from me...and whatever, it's done. I shouldn't care about the girl who I first met in real life, the one who works in the same city. If I run into her I don't have to acknowledge her because I don't know her anymore. She became nothing. For a while she stayed at home with her son and we hung out and what I'm saying doesn't negate those fun times. She went back to work and it literally took her almost a year to respond to a text message. I'm not sure how that happened but it bugged me. Sometimes you'll miss something, but for a year? Why, then, was I so hurt when she decided not to listen to my side of the story? She found the time to send me a rude text and then radio silence.

Let's turn to prison for the answer to that one, readers. Because life, and life in prison, have more similarities than we might think. The group had become a prison. Be this and do that or step down or do more time...this clique that clique this person leaks information to another and this one likes to take screen shots and another will be nice to your face. Being a moderator is like being a warden. You know what's up and watch for signs that it's getting out of hand. I set up an island, an Alcatraz, a bomb shelter. I'm not one to conform so I knew shrapnel would fly and I'd need to swim.

If you were stranded on an island what would you bring? I've always said lip balm and I stand by that answer. I certainly wouldn't take people who seemed happy and content on the mainland. Prison isn't always bad and I don't mean to compare it to just that. We'd jokingly referred to it as a sorority with hazing, secrets, and bylaws. It's a club; a "group."

Building an island wasn't meant as malicious. I was actually at my most selfish and just wanted to keep my own head above water. Not cry over the internet in front of my husband and son or in privacy; I didn't want to cry anymore and have migraines. If you cry over the internet it's time to sit in the corner. Step away.

But let's not leave Augustus Hill swinging in his wheelchair any longer. Let's bring him into the room to join the mean-to-Buffy boy and expand on life's idiosyncrasies and figure out why ultimately I cared.

You take a drug, right. The chemicals, they rush through your body, rush through your brain. And the sensations, you want the sensations again and again and again. But let me tell you, you can also get addicted to grief, to guilt, to hate. Cause, when you feel dead inside, even bad sensations make you feel like you're alive.

Oh, Augustus. Your writer was so wise...it might not be drugs. It might be emotional codependency, the need to be right, selfishness, greed, pride, higher education or getting the last word. You don't have to be totally dead inside, I don't think that's what he means. We all have holes (personality flaws) that feed off of whatever that addiction is.

Often women become addicted to the need to share all their thoughts with others. We just want someone to listen and nod - sometimes even tell us we're right, even if we aren't. It's another dead hole that needs to be fed. The internet gives a false sense of comfort, like shouting into a canyon to hear an echo. You can't see who's out there but get a response saying exactly what you want to hear. ...a pong to your ping.

That doesn't mean that real, valid, deep forever friendships won't form, it's just easier to forget the ones you don't connect with and say much to. It's easier to depersonalize. Like when I called someone who was sending me PM's. "We don't talk on the phone," was her response to me. So let me get this straight - online, we share our entire life, we've met in real life, but if I pick up the phone to say what I think, that is crossing a line? That's fine. Poof. You were never real...but for the record you're addicted to always being right.

When someone tells you you're a certain way enough times - or you hear it from enough people chances are they're seeing something you aren't. Investigate that information.

Sometimes they're hiding in plain sight. You know how they say your biggest strengths are often your worst flaws? I'm kind, but I'm also selfish. I'm patient, but I can be cold and mean. I have hurt people I care about and I hate that most of all.

I have an addiction to guilt. I feel badly over both over things that were my fault or weren't at all...I'll feel wretched over it all. This goes for things I've done in the past, present, or have yet to do. This goes for stories I hear on the news about people I will never know. It goes for testing on animals and eating meat. I hate that I hurt good people by a choice I made or their own misunderstanding of my reasons.

Guilt is my biggest addiction...

and writing is my confession booth.

What's yours?

19 August 2014

"...tell these people something they don't know about me."

"I know everything [he's] got to say against me."


what kind of writer would i be
if i didn't touch on bad poetry?
yeah, it's been a while 
but that doesn't mean i won't...

here's what you think
you think i've got something to hide
but you're wrong
i wear my inside out

so back me in a corner
with threats
of blackmail and 
other classy acts

all because i got details of
how you killed your dogs wrong

so you tried to find a home
but you still put 'em down
and now they'll never get up

antifreeze...
not really...
to quote you
invoke you
why would i try to provoke you?

i don't like you
i don't care
and guess what?
i don't scare

not anymore

so go ahead and tell the world
what you think might break me
because really, there's nothing
i'll bare it all
share it all
wear it all on my sleeve 
tattooed and totally exposed

because secrets are power 
and you've got nothing on me

13 August 2014

SEPTA and CHOP: the weekly nightmare

Wouldn't it be nice if people made room for children with special needs on the public transit system? Do I really need to explain my son's issues when we're getting on at the children's hospital stop or shouldn't adults be more aware. Chances are if you ride that bus you know it goes past all the hospitals - children, injured, veterans, we don't wear signs: should we?

What if people were thoughtful instead? If there is a three year old having panic attacks because the bus or trolley is swaying, DON'T STARE. Just get up and offer your seat. I don't need one (but I will thank the elderly woman who offered me her seat as well last week when she saw my son was scared without me as close as possible).

Where have manners gone?

Why haven't the drivers been taught to acknowledge children getting on and off their routes? Why don't they speak up? Society is trying to raise awareness for special needs but is that confined to one day? One awareness month? a ribbon or puzzle piece?

Hello, I am a special needs mom.
It took me a long time to be able to say that. It hurts.

But on the flip side I'm teaching him compassion and awareness of others.

Eyes wide open, people. It's much easier than it sounds.

It's hard enough that I have to take my son to and from CHOP (Children's Hospital of Philadelphia) weekly...help special families out.

08 August 2014

Happy One Year and One Day, Cat.


I'm sure you're familiar with my published quotes on how to celebrate your dog's birthday but I haven't shared anything on how to celebrate your cat. First, you probably don't know when your kitten was born so pick a day, any day, they won't care. I chose the day we adopted Stormborn, but then it turned out it was the day after I thought. She didn't even notice! See? all good.

I hung some streamers for her to bat around. Success.


We baked a pink flower birthday cake and had a pizza party. My friend Lirpa brought her presents: treats and a robotic bug. Stormborn was into it. Then she fell asleep under furniture and we partied on.


Nighttime came and Tristan remembered we celebrate occasions by having a Unicorn Dance Party so we plugged in and left the cat at home while we danced in her honor. Bubbles, stuffed unicorns, light up hula hoop and all.

Cheers, Stormborn. You've come a long way since 8 oz one year ago. I used to mistake you for a cockroach, now I sometimes think you're an overgrown city rat.