Stretching my legs

I keep finding myself referring to the concept of “stretching my legs.”  Sometimes I’m talking about my social legs, sometimes it’s my conversational legs, sometimes it’s my sensory legs… but I keep coming back to this.

Every week for almost two years, I’ve gone to a Wednesday morning women’s program at my church.  It’s something like a hundred (maybe a little short of that) women.  It’s packed.  In the beginning, we sit around circular tables, talk, sing, pray, eat, all in one big room.  Only, that “big” room is quite crowded.  Then, we break off into four or five separate studies.  I’ve done…. let me think… Esther (a Beth Moore study), SHAPE (which was sort of about finding your place in the body of Christ), Ezekial, and now A Confident Heart (based on the book of the same title by Renee Swope).

Can you imagine all the ways in which my legs are verily nearly pulled right out of their sockets?

Here I am, sitting around a table with six or eight other women, and expected to carry on conversation.  Now, my staff is on my left and my good friend Heather is on my right, but truthfully, unless someone directs a question right at me, I kind of can’t hold up my piece of the conversation.  I’m so distracted by the loud, colorful, moving environment that it’s pretty hard to think about chit-chat.  Did I mention that it’s loud?  These are women who I don’t know all that well, making it even tougher.  Conversational legs.

I really like these people… just not all at once, please!

The sensory environment can be really overwhelming.  The sheer volume of 100ish women is, well, loud!  And there’s music.  And there’s food and smells and lots of motion and did I mention the volume? Cause, well, it’s loud.  Sensory legs.

Anyway, there are also social issues galore to ferret through.  Hugs comes to mind.  I’m not a hugger, unless it’s one of a very select few people.  Maybe I’ll hug you one day too, after I’ve known you for some years and been through heck and back with you, sure.  But most people don’t get hugs from me.  And yet, people try to hug… time and again.  I know you’re being nice, and I really do appreciate the gesture… but why must we hug so readily?  Amidst the loud, colorful, moving room… a hug is enough to send me over the edge.  Social legs.

So then we move to the studies, and my first issue is that I want to sit in the same seat every time.  I chose a seat, the RIGHT seat, the first day… and every week since then, it’s been taken!  I almost panicked.  I had to sit on the side of the square I didn’t want to sit on, and my friend wasn’t beside me, and… and… it was all wrong!  Rigidity legs.

Sitting in a room of, oh, 30 people?  Listening?  Sitting still?  Oi vey.  That’s enough to cause some serious anxiety.  There go those legs, too.

I love, love, love this group, and I’m not about to let a little leg stretching get in my way of fellowship and worship.  These women have accepted me, no questions asked, whatever I need to get through it.  From becoming one of my very best friends to offering to me and giving me my Lucy, I’ve been so immensely blessed.  Stretching is hard… but oh, is it worth it.

Torn between two worlds

I warn you now that I don’t know where this is going.

I was at a new friend’s house the other day after bible study.  She took one of the poems I wrote and worked it into a song, and she was playing and singing it for me, so we (staff and I) were at her house.  What a nice lady, and a beautiful, gifted musician she is.  She has such an infectious smile, infectious joy.  Anyhow, while we were there, she said something like, “Now, I know you have autism, but I certainly can’t tell!  How does it affect you?”  And in the past, that would have ruffled me, maybe quite a bit.  But this time, hearing the love in her voice, I just said, “Thank you,” and my staff mentioned that I hide a lot, which is true.  We talked a little about sensory issues, too.

I try to get my mind around this.

Why, when student teaching, was it repeatedly brought up that “she can’t connect with the kids”?

Why, last year, were there threats of a group home?

If I present so very mildly, why can’t I function without staff 4 days a week?

Why?  What’s the deal?

I tend to think that I have a kind of incredible ability to cover up.  I don’t let my sensory issues show.  Sometimes my own family can’t tell I’m overwhelmed until I completely shut down or lash out.  Heck, sometimes, I can’t either.  I think, if you knew what to look for… the body language and the far-off focus in my eyes… the frozen postures and darting glances… you might be able to tell.  Maybe it happens in such a way that no one on the outside can see it… but I wish they could, because I can feel it!

Of course, if pushed far enough for long enough, I will completely shut down, stop talking, unable to process language verbally.  Or I will lash out, screaming and crying and throwing things.  But you know, that’s no fun for any of us, so I really try not to do that.

My communication ability is improving.  I’m focused on two main things right now.  One is to label my emotions, especially when with my staff.  I tend to think, though, that if you know me well enough, and you type with me, I’m a pretty darn open book when it comes to what I’m feeling.  Ask, Leigh, and Heather, ask my sister… they get it all.  But fact is that I need to be able to express, to some degree, my emotions verbally, too, so I don’t get so frustrated.  I do still tend to growl or slam my hands on the desk when I’m frustrated (can you say “checkbook”?), but I’m trying to say that I’m frustrated.  I’d say we’re 50/50, right now.

The other thing I’m improving with is attending to topics of conversation which aren’t my preferred subjects.  I have a long way to go here, but I am, as I said, getting better at it.  My favorite thing is when my staff are talking together and I’m trying to keep up, and they stop dead and say, “Lydia, can you think of a question to ask us?”  It gives me time to process.  And you know, I usually can come up with something… it just takes me more time.  We’re going to do an activity where we put topics of conversation in a box and pull them out, so each person can list a couple of her favorites, and then we pull them out and talk about them one by one.  So, one time might be cats, but one time might be something I know or care little about.  This is part of functioning in the adult world, and I look forward to improving my skills.

I think, at this point, the deal is that when you meet me, you don’t first think “autistic.”  You might not think anything.  And if you talk to me for a bit, you probably think, “Hm, she seems kind of young for 24.”  But since the ladies at church and whatnot are older than me, ten years, twenty years, fifty years… I’m not sure they have a good hold on the fact that most 24 year olds are pretty adult.  Thus, me acting more like I’m a older teenager, maybe 16-18, doesn’t stand out to them.

But that’s just a theory.  The important thing is that people at church just love me and lift me up for who I am, labels or not.  I wish that for every person on the spectrum!  To be loved and encouraged for being who they are, beyond any labels.

New books!

Scarlet’s Voice, the retitled, print version of the Meet Scarlet story that was up for a time on my blog, is available for purchase now.

Also, my anthology of poetry, Hidden in my Fingers, is available on Lulu.

As always, any earnings will go toward my service dog.  The basic costs of her coming home are funded, but she will need food and vet care for many years.

Hope you enjoy the new writings as much as I enjoyed writing them!

Lucy update

Are you tired of kitty posts yet?  I’m not.  I’ll try to lay off the kitties after this post, for your sake, but please allow me one more post in which to introduce you formally to Lucy Belle.

The two words I’d use to describe Lucy are “sweet” and “assertive.”

We’ll start with sweet.  This cat loves to be pet.  She will head butt, and cuddle, and chirp.  She is the cutest, roundest little thing, and you just can’t help but to want to cuddle with her.  She lays on my bed and snuggles with me.

As for assertive, Lucy is a Master of the Swat.  If you pet her too long, she’ll swat.  If you don’t pet her long enough, she’ll swat.  If you try to touch that oh-so-cute belly when she roly polies… she’ll swat!  The swats aren’t mean, at all.  No claws.  No ears back.  No growling.  They’re just meant to get your attention, and they do the job!  As Lucy and I adjust to each other, I’m getting really good at reading her, so I only got swatted once, the first ten minutes she was here.  I have a bit of a system to petting her.  Pet 2-3 times, pull back.  If she head butts, she wants more.  If she roly polies, she’s done for now.  Then two seconds later she’ll head butt again and you’re petting her again.

Lucy is just the easiest cat.  Don’t get me wrong- I love Elsie more for having cared for her so much- but it was exhausting and stressful.  Elsie woke me up several or more times every night.  She had to eat every 2-3 hours.  She needed medicine.  She threw up several times a day.  She used the litter box constantly, and it smelled so bad I had to clean it all the time (2-3 times a day).  And then there’s Lucy Belle, who just… cares for herself!  She lets me sleep through the night.  She self-monitors her eating (I just scoop 1/4 cup of Purina One into the bowl twice a day, and she manages to spread it out).  The litter box doesn’t even stink, and it’s currently in the middle of the room (we’re working it over to the litter box closet, slowly).  Of course she comes over and pokes at me for pets sometimes, but that’s a joy to be had.  I had gotten to think that having a cat meant having an old, sick cat, and I can’t believe how easy a young cat is!  Although, I hope and pray that I have Lucy until she’s an old cat and get to care for her someday too.

My number one worry with Lucy was that she would scratch my brand new sofa.  I bought her a nice, big scratching post (over 2 feet tall) and rubbed it with catnip…. and good little girl scratches it right up! She knows just what it’s for.  She gets really into it, so it’s kind of funny.

Speaking of funny, she is just the funniest cat.  I don’t know how to explain it.  She never, ever stops moving (hence the lack of photos in this post- I can’t get any!).  She dives, and rolls, and chirps.  She is very round.  Her face, her tail, her body, her ears… all round.  Very broad and stout, as opposed to dainty little Elsie.  She’s constantly putting a smile on my face.

A dear friend told me something very smart.  She said that kitties are like babies.  You don’t have to love them right away.  You have to take care of them and be nice to them, and the love will come.

And it will.  I know it will.  For both Lucy and I.

As I said on Facebook, some little kitty is stealing my broken heart… and making it whole again.

The Loud Hands Project

Community.

In the early days of my autism diagnosis, while I was a college student, my autism community consisted of my best friend Leigh and only Leigh.  Now, this is not to say that Leigh doesn’t make for some pretty awesome camaraderie, but a pair of two does not community make.  I longed to meet people like me.  I didn’t know that approximately 1% of people my age had ASD.  I didn’t know about all the bloggers and authors and organizations.  All I knew was that I was different, and I felt left out.

I started blogging in June 2009 and from there, I found myself in a community of mostly parents of kids with ASD.  To this day, some of these moms remain my dearest friends, and I can talk to them about anything, from behaviors  to diagnoses to… things of which I’ll spare you, here.  Let’s just say, they are there for me, and they provide me with community in a big way.  But still, where were the people like me?   I still felt like an odd duck– a welcome, wanted duck, but an odd one, nonetheless.

As time  has gone on, I have, mostly through Facebook, met up with some amazing autistic advocates.  There is a very basic level of trust, or rather, of community, among us.  I’m different.  You’re different.  Let’s be different together, why don’t we?  I have made friends with autistic people of all sorts.  We don’t agree on everything, to be sure.  But we respect one another, and we support one another, and that… that is community.  These friends are there when my cat is sick.  They’re there when I’m having a hard time.  They’re there when I need help.  Let’s be different, together.

And this experience of mine has left me with a dream, that when any person is diagnosed with ASD, somehow, magically, they are enrobed with community.  They hear not “you’ll never be…” and “you can’t…” but rather will find themselves at the center of a community which works together to ameliorate our weaknesses while building each other up in our strengths.  I dream that no child will grow up in isolation, wondering who he is and why he is here.  That no child will be afraid to speak his mind– his beautiful, unique, autistic mind.

There is a way to make this dream one step closer to reality.

Taken from the creator of The Loud Hands Project:

 

The Loud Hands Project is a transmedia publishing and creative effort by the Autistic Self Advocacy Network, spearheaded by Julia Bascom. Currently, we are raising money towards the creation of our first and foundational anthology (Loud Hands: Autistic People, Speaking) and accompanying website.

The Loud Hands Project is thrilled to announce that after just nineteen days of fundraising, we not only met but surpassed out stated goal of $10,000. The anthology is officially a GO! Check out our submissions guidelines.

Our initial goal has been met, but indiegogo is still encouraging us to keep fundraising for the next 60 days. We made over $10,000 in just nineteen days. How much do you think we can accomplish with the two months we have left?

We’ve got some ideas.

Here’s the deal. We’ve set three incremental benchmarks. As we meet each benchmark, we’ll be able to fund additional components of The Loud Hands Project. After all, as you can see from our description above, the anthology has always been just the beginning. The Loud Hands Project is a lot more expansive than a single book, and we have an opportunity to start putting down roots much earlier than we’d hoped. Take a look at what we’re thinking of:

 

Benchmark 1: $15,000 “About us, without us”

“About us, without us” is a video about the Autistic community and our place in the conversation around eugenics and the prevention of autism. If we make the $15,000 benchmark, we’ll be able to pay for Julia to go on the road and collect interviews and footage, and cover production, editing, and initial distribution costs.

 

Benchmark 2: $20,000 “Welcome to the Autistic community”

-With these funds, we can rush website development and have the Loud Hands project website complete, fully accessible, and ready to launch on April 2, 2012—Autism Acceptance Day.

-Use the website to commence the development of materials tailored to all ages and abilities explaining autism and welcoming the autistic person to the community.

-Initially, this will take the form of a letter drive, blog carnival, and pamphlet-design competition, with ongoing further refinement and eventual publication of materials.

 

Benchmark 3: $25,000: Connecting to Community Together

To begin, we will produce a DVD incorporating video and written content from across the history of the Autistic community, establishing our historical context. Then, to explore the state of the movement today, we will use the funds raised to establish a Conference Scholarship fund for Autistic self-advocates to use to attend Autistic and disability rights related conferences and events connecting to the larger theme of disability culture. Scholarship recipients will participate in a second video documenting Autistic community and culture.

With an overarching commitment to undoing the cultural processes and ghettoization that make autistic people strangers to ourselves and spectators in our own stories. Put another way, The Loud Hands Project consists of multiple prongs organized around the theme of what the Autistic community refers to as “having loud hands”–autism acceptance, neurodiversity, Autistic pride, community, and culture, disability rights and resistance, and resilience.  We focus on cultivating resilience among autistic young people and empowering the Autistic community writ large in building communities and cultures of ability, resistance, and worth. To quote Laura Hershey: “you weren’t the one who made you ashamed, but you are the one who can make you proud.”

 

This project is the means by which a child will grow up, never without community.

While the Project has raised its goal of $10,000 extra funds are still welcome and needed so that they can do more good.  Good for me, good for you, good for our kids.  Please consider donating to the Loud Hands Project in any amount. You can donate here.

Let’s make the dream for community a reality for tomorrow’s kids.

Lucy B. comes home to me

Pitter-pat, pitter-pat
Home with me, my kitty cat.
Purr and chirp and mutters she,
Stripe-ed girl,  my Lucy B.

In my closet with not a meow,
Amongst the shoes of summer now,  
In the corner does she wait yet,
For me to come and sit and pet.

 

First photo I saw of Lucy, before she came here.

 

Lucy hiding behind the toilet.  She has since moved to the bedroom closet.

One step at a time

I’m mostly, hour to hour anyway, okay-ish, now… it’s just when things get really quiet, like when I try to sleep at night, that I fall apart.  And you know, I just let myself crumble.  I know I’ll fall asleep and I know I’ll feel better when I wake up, so I just let it happen.  I think it needs to.

This won’t be a long or eloquent post, but I wanted to come by to tell you that a new cat, Lucy, is coming to visit me tomorrow… and if she and I are a good match, she’ll be my cat.  She’s three or four years old, and a brown tabby, but without the white that Elsie P had.  I won’t put up a picture until she’s definitely my cat.  The one worry about Lucy (who I’ve taken to calling Lucy Belle, or Lucy B.) is that she is not declawed.  She needs to learn to scratch a post.  Mom and I will get her a post tomorrow and I’ll work like crazy with her to teach her to scratch it.

My feelings on Lucy B’s arrival?  Mostly good, with a twinge of sadness.  I miss Elsie and her little kitty quirks.  I know that I need Lucy to help me heal from Elsie’s passing on.  I hope I don’t try and compare her to Els, because that wouldn’t be right or fair.  I hope I’m so overcome with the joy of a kitty and her sweetness that it won’t occur to me to compare.

I am worrying that I won’t love Lucy right off the bat.  My love is a little sore, right now, as you might be able to imagine.  My good friend M gave me great advice: You don’t have to love her right away.  You have to keep her alive and be nice to her, and the love will come.  I thought that was smart thinking.

Anyway, if you could keep in your thoughts and prayers Lucy B and her potentially dangerous toes (for the record, she doesn’t ever scratch people!  We’re just worried about my brand new couch), I’d appreciate it.  Oh, and my heart, if you don’t mind.

Though not to dwell

There are good hours, in which I think of Elsie P and smile at her antics, and there are bad hours, in which I think of her and cry my eyes out.  I know my cat, and I know she would not be thrilled if I were sitting around, dwelling on her absence and crying.  She did not like it when I cried.  And so, if only for her, I’m trying to focus on the positive… while still thinking of her, and remembering the good things.

I just wanted to tell you about the amazing outpouring of love and support I’ve received throughout this whole thing.  I can honestly say I’ve never felt like Elsie P and I were so loved as now.  So, a few little scenarios for you…

First, yesterday, I skipped bible study.  I know this sounds like a bad idea, but let me explain that due to Elsie’s illness, I hadn’t slept more than a few hours in over a week.  And, as she was struggling to hold on, I continued not to sleep.  And so, when I finally dozed around 7 AM on Wednesday morning, and my alarm for study went off at 8, I decided to postpone staff’s arrival (gratefully, she was flexible) and sleep for a few hours.  When staff got here, I asked if we could go to the mall to walk, as my mom said that perhaps walking and getting a bit of exercise would help me to sleep better (note: it did).

As we were on our way to the mall, we went by church.  I noted the time, and saw that bible study would just be letting out.  I asked if we could stop to say hi to Heather, one of my closest friends.  Of course, said staff, and so we did.

First, I ran into one of my pastors, who gave me a hug (hugs were okay this day, don’t ask me why!) and chatted for a bit.  She said she’d be praying.  This pastor is the dearest of souls, but very busy, so often if you’re going to talk with her you have to walk with her!  It was a treat to get to stop and talk.  Then, as study let out, apparently my bible study leader (whom I communicate with via email) and Heather had told the class about Elsie, so all the women coming out of the room came up to me and hugged me and talked with me.  I probably got eight hugs!  As I said, Elsie P and I are loved!

Then, as we were talking to Heather, I mentioned that staff and I were going to walk at the mall and that she could join us.  She agreed, and an hour later (after a Chipotle lunch) we were at the mall with Heather and her youngest son (he’s 3).  Heather and I are the sort of friends who can do nothing at all and still have fun.  I’ve been at her house while she’s cleaning, or doing dishes or laundry, or what have you, and I never cease to leave feeling lifted up and loved.  So anyway, we walked around the mall and did nothing in particular, and I was thrilled.

When I came home, I had a message on my phone from my friend M.  Keep in mind that, despite my many friends from places far and wide, only a very small number of them could actually call me, as the vast majority of my friends are internet friends.  Anyway, M had called me to say how sorry she was and to give her a call back when I could and we’d chat.  I don’t know what it is, but the fact that she took the time to call me like that just means so much.

Not that the comments on my blog (thank you!) and Facebook messages (thank you again!) don’t mean so much as well.  I think my sister was a little startled at the sheer volume of support I’ve gotten.  I know it makes her feel good to know that I have this community.

It’s not as if this thing can be easy, but thank you for making it as supportive as it can be.  It really, really helps.  I know Elsie P appreciates the support, too, (as long as it’s not interrupting her dinner time…) so that I don’t cry as much.  That kitty hated for me to cry.  And so, I will focus on loving her for the cat she still is up in heaven, and not for the cat that I’m missing here on earth.

Love,

Surviving the worst days

I will inevitably bawl my eyes out as I type this post.  Yep, cue tears.  Have hardly even started writing, and there they go.

But I need to type this, because someday, don’t ask me how or when, because right now I can’t even imagine it, someday I’ll be glad I did.

I want to remember Elsie’s squeak. Myeh-eh? she says, every time she sees me.

I want to remember her shining green eyes.

I want to remember the way she feels when I’m laying alongside her, rubbing her belly, and she stretches out and her whole body shakes.

The way she paws at the shower curtain, trying to stick her head it but yet avoid getting wet.  Even the length of time it took for me to get a shower was too long, in her book, for her to be away from me.

The look on her face when my staff gave her scratches, and oh, how she loved it.

I want to remember the way she positively wedged herself into her basket-in-a-box-on-a-stack-of-drawers.  The way she cuddled with the stuffed kitty in there.

I want to remember her little white toes and how soft they were.

I want to remember the way she was so persistent in waking me up to eat in the middle of the night… bite, likc, paw, bite… until I got up and fed her.

I want to remember her boxes.  At last count, she had four.  And they must have tissue paper inside.

And her shiny balls that she chased around the house.  They’d collect under the couch, and if you threw six or seven at once, she’d go in all directions at the same time, and it was cute and hilarious.

I want to remember her spot on the back of the old couch, where she made a dent.

The way she sat like a gargoyle on the arm of the couch.  Cutest gargoyle ever.

Most of all, I want, no, I need to remember the way she made me feel.  She made me feel wanted, needed, loved in a way that no one and no thing ever had before.  No matter what I was going through, she was there.  If she was sick and I was having a meltdown in the shower, she’d climb right in the shower with me to help me.

I’m terrified to forget.  I’m terrified that she will become less real, just a memory.  I never want that to happen.  If that means missing her so bad it continues to hurt for the rest of my life, I’m okay with that. I think it will always hurt.  In a way, I hope it does, because that means she’s still real to me.

Elsie Penelope, I love you, baby tee.  No kitty will ever replace you, but you know me and you know that I need to have somebody here with me… she is not coming to replace you in any way, but to help me heal.  I’ll never stop longing for you.  Please don’t be scared, because Jesus is going to greet you with open arms.  He will take better care of you than I ever could.  I trust Him completely with you.  But hey, kitty girl?  Please don’t forget your mama.  I’ll see you someday soon.

Kisses forever,
Mama

Hope you’ll take this

I’m too… too… oh, I have no idea what I am.  I can’t post, I can’t write, heck, I can’t even see the screen through the tears to type for more than a minute.  Elsie P is not doing well.  She’s currently at my mom’s, because I was cracking under the stress of being up all night cleaning up throw up.  I swear I have cat-throw-up-sound PTSD.  I’m terrified of that sound.

As it stands, Mom’s trying to get her better (just as I was), and if she starts to perk up, then all is well (until next time when this happens in 6-8 months, then that will almost certainly be the end).  If she doesn’t, then we’re going to do… the humane thing.  She’s suffering.  I will not let my baby suffer like that.

Anyway, all I have is this song and these lyrics.  I’ll post the video with the lyrics below.

 

 

I have unanswered prayers
I have trouble I wish wasn’t there
And I have asked a thousand ways
That you would take my pain away
You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine

When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands
When you walked upon the earth
You healed the broken, lost and hurt
I know you hate to see me cry
One day you will set all things right
Yeah, one day you will set all things right

When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands

Your hands that shaped the world
Are holding me
They hold me still
Your hands that shaped the world
Are holding me
They hold me still

When my world is shaking, heaven stands
When my heart is breaking
I never leave you
When my world is shaking, heaven stands
When my heart is breaking
I never leave
I never leave your hands