Autism and the ER–finally.

My mom took the photo just as I was about to fall asleep.

For me, in the ER, this is almost a miracle–two hours into the marathon of overload only an ER can create, and I was laying down, not full of anxiety or crying or arguing.

I have had many, many ER visits—we’ll go with a hundred. And I’ve had roughly 35 hospital stays, all since 2012. At this time, my home base hospital is a big city hospital where staff is used to doing whatever they can to move a little faster. They ask questions at the speed of light. They take your blood pressure on one side while drawing labs on the other. They barge in and dash out without ever telling you who they heck they were and what they were doing for you. Or maybe they just needed more paper towels and came to steal some. Sometimes you can’t tell, especially once it’s the 30th time that day.

I go to this hospital because their IR (interventional radiology) department manages my feeding tube as well as my central lines. With devices like that, only the hospital that placed the thing wants to manage any care related to it. I feel safe once I’m down in IR for whatever procedure I need. They know me so well. They know that stitches won’t stay, that I’m allergic to all adhesive, and they know that I need anesthesia sometimes, even if others don’t.

But that ER is the WORST. Loud, fast, chaotic… it turns into a situation where I’m not communicating well, they get angry because of it, I cry, and then I’m really not getting the care I need. In January, I went in with a high fever, and I KNEW I had a central line infection and was becoming septic. The ER doctor all but physically shoved me out their door, and she and another doctor were giving me radically different messages with some twisted pressure something stuff thrown in. Just as they were discharging, they took my temp a final time, “Just so we all feel safe!” according to the nurse. It was 103 again… maybe I should’ve had the long meltdown hours earlier and it’d have saved me all that upset! By the time I had a room, my cultures were already positive and I WAS septic.

Here’s what blows my mind. I have seen this hospital named in multiple articles about ERs and autism. Apparently they know how to care for patients who need things to be slower, quieter, and more predictable. Not the place that had me so panicked the last two times, I was in daily loop mode from the anxiety bout when I’d have to go back. (loop mode–“I don’t want to go back.” “What if I have to go back?” “What will we do when I need to go back?”)

One thing my lovely autism-and-mito life has changed is… me. I do not believe in “it won’t work” or “it isn’t possible.” If it’s not working and it needs to work, I better get it on it and find a way! So I went on a mission. I was going to find a way to get the medical care I need without completely terrorizing me.

In all those articles about the hospital’s understanding of autism, I always saw the same doctor quoted… I may have a word a little off in this, as in, right concept but not perfectly accurate, so I apologize but… as I understand it, he did autism training for the whole ER staff as part of a study. A few years back, I even wrote to the reporter and asked if I might be able to get in touch with him. I’m a great googler and my mom is a great phone caller, so we did find a way to get in touch–but he was out of the country. His assistant said he’d call my mom the next day when he got back. He did, while he was driving home.

He asked to learn more, so I emailed him the next day explaining that sensory overload and constant changes in the instructions or expectations are big issues. That I would do better with both if given time to communicate and a chance to work things out in typing first if needed. He forwarded to my mom the paper he did based on that work in the ER. It has a series of questions about the patient’s unique needs. Really, really good, respectful, this-guy-gets-it questions.

I did have to go back just last month. While I packed my bag, my mom emailed him to say we were coming in. He responded almost right away. He was again out of the country, but he let the Director of Nursing know we were coming.

It was different as soon as we got there. Smaller room, overhead lights turned off. Slower, quieter talking. Explanations. Doctors were taking my words literally and not making assumptions of what I “really” meant. One person at a time. Doctors who sat down and who didn’t block my mom out or only talk to her but not me. And one of my favorite ER nurses ever–as we went to our room, I saw him in the hallway. I said, “Mom! Remember the worst ER day ever? This is the guy who saved the day!” Nearly everything he says is sarcastic. I think. I can’t really tell. Normally that would upset me… but somehow I’m not the least bit threatened. He really truly is like a superhero nurse. He took over after the wretched I-really-was-septic stay, after a nurse who hadn’t been in my room in hours. He did all the things she should’ve done and fixed the errors she’d made in the last 8 hours. He’s never too busy… they pull him this way and that, yet he gets coffee for moms and takes patients to their rooms so they don’t have to wait even longer for transport. He’s a captain in the air force and moving to the VA soon–I’ll miss him when I pop in at AGH, but really, he gives the quality of care our veterans deserve.

And that’s about it. Labs, tests, talks. Medically, we were all confused. I went in because I had been spiking high fevers and had a lot more pain and rapid heart rate. But when I was in the hospital the week before for the same reasons, I got no fevers at all!  y blood sugars were running oddly and persistently high (300-400) and my white blood cell count was very very low (2.1).Over the weekend, palliative care did my labs again from home, and they did show possibly infection, so that’s why I went back in. I was still getting all those symptoms on and off. They thought the positive test was an error, yet, I was showing so many signs of infection but no one could find any other signs of where one could be.

Ultimately, the verdict is that my fevers and rapid heart rates are due to progression in my failing autonomic nervous system, which regulates all those things that just happen in your body–temp, heart rate, blood pressure, sweating, digestion… It seems the fevers hit when I’m active, as in, on my feet more than fifteen minutes. The body has to work harder to regulate when standing, and without the energy for cells and organs and systems and bodies to do that, mine fails. At the hospital I get no temp or racing heart, but I am always in bed, leaning back, feet up. It still doesn’t answer all the questions, but… this mito. There will always be tons of unanswered questions.

I am so thrilled that this hospital showed me what’s possible in terms of understanding the challenges that come with autism in the ER. It gives me more hope for everyone else who needs easy but important accommodations. Before, just knowing I’d have to go back was like a big tent of edginess over my days.

Thanks to a doctor who cares so much about the autistic patients no one else in this very medical city has helped yet, I had no tears, no frustrated growling (it’s hard to find a word for the sound I make!), no repetitive questions or panic when my mom had to leave for the night. It just took a darker room, quieter voices, and slowing down a little. I wish the whole medical field could take a step back and realize that treating patients as individuals can be that simple and make this much of a difference.


A little bit after the photo, I actually fell asleep.I guess I had run out of things to stay awake and worry about since the list was so very short  🙂

Thank you, thank you, thank you to Dr. V!
NOTE: At this time, the article with the questions I mentioned is only available by purchasing the full text version from an online academic journal, so I can’t share it with everyone. The pink document below is the best I can do for now, and it’s much better than nothing! This is one I did on my own. It’s half sheet when printed, so I have a copy in several places, like my wallet and the bag I take when I go to the hospital. I highly, highly recommend having something down on paper like this. You can copy my format or even whole statements from it if they fit your situation.

autism medical info pink sheet

Aunt Ee-ya finds her way

Having children is not in my future. Sometimes people say “you never know,” but yes, I do. Some of the reasons are personal, some are medical , and others come down to autism and the fact that I overload so easily.  I think the biggest reason is that I don’t stay engaged with what goes on around me. It wouldn’t be safe for me to be the only person caring for a young child especially when I am not yet caring for some of my own needs. But not having the option of having kids really isn’t a sad thing for me. I have a lot of limitations in my life, but I’ve learned and learned well that you can mourn that thing you don’t have, but that doesn’t mean what you do have isn’t really, really good, too.

My sister is six years older than me. Our mom has always said how we will always have each other and how there is no one like your sister. As we are getting older, I’m starting to see her not just as the big sister who can do so many cool things and who has all the answers (cause as every younger sister knows, even when she has no clue, an older sister always has all of the answers, right?). I see her leadership and insight and wisdom. I also see how hard she works at things that challenge her. Her challenges are very different than mine, but the fact that it’s hard to overcome your most ingrained weaknesses is universally difficult. She screws up (as do I), but she apologizes and means it–she must have learned from our mom. I’m twice as lucky–I get two really good role models!

The most powerful thing has been watching my sister become a mom. My nephew–I call him Mr. B–is 2.5 years old. My memory goes far back to right around my second birthday, and it’s not a few random flashes… I honestly think I remember more of my toddler years than my mom does, things like the songs of TV shows and the names of nurses and doctors I saw as well as things about our daily lives and growing up. Watching him and my sister do everyday things, I remember how loved and excited and everything else I felt when our mom did those same things when I was little. I won’t be a mom, but I am a very, very lucky aunt. I can’t imagine how an aunt could be more a part of a little one’s life. It simply doesn’t get better.

At this point at least, my nephew and I have two big things in common. First, our favorite movie is Cars. I love it because there are officially no parts that startle me and no bad guys being mean to good guys. Plus, it’s awesome. He thinks it’s awesome, too, and it fits right in with his total obsession over vehicles of any kind. I’ve been trying to convince the kid of this awesomeness since forever, because cars are his THING, and finally about six months ago, it clicked. B also adores kitties. In fact, if he sees me, first I get “Hi Eeya!” though he sometimes says “Aunt Ly-di-a” these days, which is a little bittersweet. The next thing he says to me is, inevitably, “Lu-cy?” In case you’re new around here, Lucy is my cat, and I LOVE cats. Love doesn’t cover it. They are the single most natural and perfect connection I have.  Mr. B’s first word was meow… and whether he ends up liking cats the best or not, one thing I know is that he gets the total joy I feel when I–we–see them. He’s always up for the tractor tipping scene in Cars, too, which I pull up on YouTube almost every time I see him. Everyone else is bored of it by now. Not B.


And then, just when I was sure that life couldn’t possibly get better… it did. on December 3rd in the wee hours of the morning, our family had a second wave of surreal joy. Meet E, my niece.

I never knew why people were so taken with babies. I still don’t understand, but I am totally taken! I may never be a mom, but I do understand things I didn’t before these two blessed our lives. I remember when my sister texted me that Mr. B had a high fever and they were in the ER–I’ve never had the blood-goes-cold feeling except that moment. I’ve never all-out cried with joy except when we found out E was a girl. I’ve never prayed for anyone or anything like I have been praying since the day we learned that Mr. B was expected. I like babies and adore kids, but honestly, I think every baby looks the same. Except these two. Something about THESE kids is altogether different, whether I can make sense of it or not.

I realized early on that a lot of the super-cool aunt jobs won’t be my role in their lives. I won’t be babysitting them alone anytime soon, as I disengage too easily and Mr. B is a climber and gets into everything. Because I am never without a 25-lb rolling backpack attached to me by a few feet of tubing or else in my wheelchair, I can’t hold the baby and walk anywhere at the same time. There won’t be sleepovers, I won’t drive them to do fun weekend things, I won’t be giving them cousins to play with. In some ways, their mom will probably always have a degree of oversight and support in my life. I’m not and won’t be married, and it’s just Lucy and I (with my support staff) at home.

As I said early on, it’s easy to feel see this situation as missing out both for me and for them. But if we only see the holes, we’re missing so much!


They’ll always have…

Someone who is ready to play with them, either in a way to help them grow and learn or in a way to make them feel like they’re doing something taboo while keeping them safe. It’s a talent of mine.

Someone who knows about all the best kid books and likely has a few of them on her bookshelf.

Someone to share Disney magic with them!

Someone with a ton of craft supplies to make cool stuff and send cool stuff to them in the mail.

Someone to make up games and activities so they can have fun when they come over. (I made the car track many months ago and have been glad to see how well it’s held up! I walk on it all the time.)


Someone who will always have a few toys at home (and if they leave a plain wooden truck around, they have someone who will make it a lot more fun with B and his Aunt Eeya on a road trip!)

They’ll have someone who knows the intricacies of child development.

Someone who can teach them that when kitties scrunch their eyes, that means they’re smiling.

Someone who is so helpless around blank wood and markers that she will make them a second, even neater car…


Someone who will be ready to start celebrating their birthdays at least two months in advance.

And who will be entirely on their side, lending my voice to their begging to open presents NOW! and cake right after. Or at the same time as presents. Or before, and then presents. But none of this sitting around and chatting stuff!

They have someone who knows what it’s like to try really hard and just not get it right… who will be the one to be proud of the effort and not upset at the lack of result.

They will have someone who is proud of everything new they try, excited to watch them grow up, and darn sure they are the cutest, most amazing kids in the world… just like every other aunt.

We may not be typical, but we’ll be fine–more than fine. We’ll be our own kind of awesome.

The What Versus the Who

I’m good at telling you what I know.

I know a fact. I know the ID number on the library card that expired in 2011. I know that there should not–no way, no how–be an apostrophe on that sign.

But do you know who I am?

Do you know I’m not totally self-centered? My last thought was that I’m thankful my mom got to get away. I’m so proud of myself and my family (all of whom are typical and very capable but have dealt with some very hard things in a very short time) for how we did for those few weeks. I can feel a bit of what must be her relief at seeing me make it through with no panicked phone calls and no real need for her to save the day. But I miss her. I miss her smell the most. I feel the weight my mom must carry from missing her own mom’s scent every day for more than four years now.

Do you know that in my mind, the world is a playground? My thought just before the mama blues (not deep, dark blues but something like blue-sky blues) was an infinitesimally brief wish that trash could Apparate (Harry Potter) to the dumpster, but I quickly realized that would first mean I’d have to be able to Apparate, and… yeah. Real world and all.

Do you know that I’m not always uncomfortable being silly? When I got back from the manual labor of taking the trash to the dumpster, I was texting with my nurse about what time she’ll be here tomorrow and what medical adventures my past few days have brought. She’s coming early–I reminded her that Lucy will be all over her.  Then, I said, “Is it me you love or just my sterile field!”  As soon as the sterile field is laid out (to change my dressing on my central line), Lucy has to be pet. A few weeks ago, when I was in the kitchen as the nurse set up the field, I heard, “No! No! Lucy, I can’t pet you. Oh my gosh.  Fine.  I’ll pet you with my nose.”  And she did. Keeping sterile things sterile and a happy cat are like priorities #1 and #2 around here.

I spent a lot of time last week wondering how many common binaries are common in all societies… is light always good, is dark always evil? Is happy always hi and sad always low? If not, what made us make those connections and what made them prevail all this time? And if so… why? Really, why?

Why do we assume something to be the only way, and why is it good enough to say it’s so because That’s The Way It Is.

Because you know what else has slid through society’s collective consciousness for eons?  That thinking and speaking are one and the same. That what a person thinks, feels, and believes will come through what she says. That her words are a good way to judge her understanding, ability, and connections.

We sure screwed up with that one.

Cats in the ER

Hospitals… it’s hard to imagine a worse environment for someone with communication, social, and sensory challenges.  Unfortunately, in addition to autism, I have extensive medical issues due to mitochondrial disease (mito). My body has trouble making energy, so I have a lot lines, tubes, pumps, and other extra hardware. When something breaks, it’s a dash for the ER.

This Rapunzel chick thinks she knows about being Tangled. If you see her, tell her to hand over the crown.

This Rapunzel chick thinks she knows about being Tangled. If you see her, tell her to hand over the crown.

The beeps and smells and hospital gowns are an instant sensory assault. The many people and their rapid questions quickly overwhelm my ability to communicate even when I know the answer. Sometimes, doctors make assumptions about my behavior, assuming that I’m not capable, that I’m happy to be there, or that I’m not showing respect.

It was one such unlucky night that my central line (a large, semi-permanent IV in my chest that goes to my heart) broke at 3 AM.  I went right to the hospital, and eventually, I made my way to Interventional Radiology (IR), the department where these lines are handled. I knew the stress of the procedure could make my chronic migraine into something truly ugly, so I asked for mild sedation to keep my body relaxed and avoid triggering my headache. They told me no. They don’t sedate for this. This is easy. This will be so quick, even painless! And anesthesia would take too long.

Do i LOOK convinced?

Do i LOOK convinced?

It wasn’t easy or quick, and it definitely wasn’t painless. Those 90 minutes were the worst medical procedure I’ve ever had. The whole time, the team complained that it was already past their quitting time and that they still had one more patient.  Anesthesia would take too long…

That night, back at home, the stress, the communication breakdown, the sensory onslaught, the surgery while I was wide awake… it triggered the worst migraine episode I’ve ever had.

The next time I had a line emergency, two months later, my favorite IR doctor was there. Dr. N had no problem with mild sedation. He surprised me when he asked if I had something I particularly liked–yes, cats!  His nephew is my age and on the spectrum, too, he said. He likes movie credits. I was sedated enough to be relaxed but still awake, and the doctor spent the entire procedure swapping cat stories with me.  It was the best surgery I’ve ever had… and I was awake!

The most recent time I had my line changed out, the IR doctor was one I didn’t know, but he was fine with sedating me. I was so proud of myself for advocating for my needs–“I’m a tough cookie, but I had a really bad experience earlier this year. When I’m stressed, my migraine surges.” It might not have been quite so pristine in delivery, but even so, those are not words I gather and share easily.

As I hung out in the holding area, Dr. N came over to ask what adventures I’d had since the last time he saw me.  “Well, I’ve been in the Wall Street Journal… And on Good Morning America!”  I don’t go around shouting it—really—but he did ask about adventures!

“No way–if I Google your name, it’ll come up?”

He did.  It did.  He left the story up on the computer screen beside my bed in the holding area and told every passing staff person to go look.

To the right of my bed...

To the right of my bed… The WSJ article.

When I went back to get ready for the procedure.  I asked for a pillow under my knees and something to block the light in my eyes.  Who is this person so calmly and effectively advocating for heself!  Where has she been all the other times!

From the next procedure room, I heard Dr. N’s voice. “But it’s my line… I placed it back in April!  My line is in the Wall Street Journal!  It’s famous!”

He had no way of knowing I could hear him. I knew he was being somewhat silly.  That made me laugh even more.

He came in and finished the prep… I don’t quite know when it changed hands or why, but he was doing my procedure. He said it would take longer to place a temporary line for sedation than it would to just do this thing without it. He said it would be no more than five minutes.  One stick for numbing medicine, the only thing I’d really feel.  “We can totally do this and get you out of here.”

I cautiously agreed, as long as he told me exactly what I would feel.

It turned out that he was right. One stick, no other pain. And it was more like two minutes till he had me all back in order. He told the nurses to wait a second before they sent me back to holding.  The whole thing was so quick, he wasn’t finished with his cat story yet, and for this rare doctor, that was more important than getting home three minutes sooner. I hope he knows how much this rare patient appreciates it.

But then let me try…


To Lydia with Love

Lydia comes in
Like a gust of March wind
And throws her things
helter & skelter.

She would let them
lay on the floor
For a week or more
If only we would let her.

Now she’s really neat,
when she’s on her feet
tap dancing or ballet
She can pirouette and twirl
She’s a very talented girl
If she would only learn to
Put her things away.

Love, Grams
(aka Nana, who passed away in 2002 at 89; this was written in about 1997, and it’s entirely true… but it’s both written and read with love and a smile)


Yep, I said the word. It’s a BIG thing in the world of autism.  It’s a constant worry.

21 marks adulthood.  11:59 you aren’t, 12:00 you are.  You are no longer learning, growing, developing. Parents of autistic kids are panicked by these deadlines.  It used to be even more rampant than it is now that five is the age cutoff for speech. Toddlers and their families exhaust themselves to beat the deadline–what if they don’t?  There are few things that hurt my heart more than to hear we tried, nothing worked, he just can’t do it.  All those weeks of full-time-hours over how many years from kids who still need naps…

What if we’re approaching it wrong?  And what if there is no one right way?  What if there is no one deadline?

These deadlines cause us to work in ways that don’t serve us… then we get to the deadlines, when we are really just hours older than we’d been when we could still believe it was possible…, but now, any remaining hope is chucked into the world of Forgetaboutit.

Autistic brains don’t follow a typical path.  No amount of therapy will un-make our brains and then re-make them like yours, just as therapy can’t make you experience the world–sensory, social, emotional, etc.–or respond to it like I do.  At least, not unless you’re essentially acting in a real-world play.  Do you want to live your life like that?  No, me neither.  Good thing is that I’m old enough to say you can’t make me, even if someone tried.  But kids can’t say that, and they’re made to try, and they’re made to believe that’s the only way they can be okay.  Do you want to live your life like that?

I was 22 when my doctor, an autism specialist, was discussing the F word (future) with my mom. She said I had reached my developmental peak and that supportive housing and services would be a good direction to start looking and…

And we went along with that assumption. I moved into an apartment with help from support staff and my mom.  My biggest challenge has always been sensory, which made and makes errands difficult. I had to learn and practicepracticepractice finances, cleaning, laundry… It was a constant struggle.  I needed the support to function, but I was socially overloaded by other people being there, so I’d fall apart when they left each day.

I ended up living in a nursing home for 15 months with an elderly roommate who thought I had it out for her.  I would have been in a group home. but they have nothing  appropriate in my state for autism or medical needs let alone both.  I was expected to be in that facility indefinitely.  In my 26th/27th years, I made more gains than I had in the last ten years… and it wasn’t that someone found magic… it was time, faith, love, and a peace that whatever happened, I was okay. I learned not to freak out all the time, to say… meh.  Okay, it wasn’t “meh” at first.  It was more of a process.  Medically, I have palliative care twice a week, and my nurse pays much attention to Lucy (granted, Lucy gives her no choice).  I see my PCP every two weeks for a long appointment–it ultimately saves her time and me anxiety, because it almost eliminates phone calls between appointments. I have supports for the daily living skills where I need them (not through the state; I had to drop out as my health was in the way). I have even gotten infinitely better at organizing! Yes, me, the very same gust of wind with a helter-skelter life!

So… what has worked?  Though it wasn’t the overarching plan, we’ve started to approach things more with the idea of how we can make it work.  And this has turned me into someone who never takes “it won’t work” for an answer–here, let me try–whether it’s fitting something in a box, problem solving a way to keep a heavy pump on an IV pole without a clamp, or finding a way to get me to wake up–it WILL work.  One big thing that has helped is probably counterintuitive to most… my apartment is TINY–280 square feet!  I love it and have no desire for more space.  Both physically and organizationally, it’s much easier to keep things straight, and a big key is that I can see everything.  If I can’t see it right now, it doesn’t exist.

A lot of my drawers are see-through. This set has shirts and hoodies below, and the top drawer is the medical stuff I use in that spot.  It’s stashed there so I don’t have to get it in the kitchen, which may only be ten steps away, but I can promise you it would never make the trip!

My kitchen has most of my supplies… I sure don’t need the space for food much!  These drawers are also see-through, which makes it easy for nursing or my mom to find stuff.  It also helps me to get a quick idea of how much I have left.

This is more of my stock, dated and then organized by date in a way that every item can be seen from the front… again, in case I need someone to find something.


One amazing change has been that most of my oral meds come in blister packs–you can see part of one strip in the first drawer here, the four in a row… the paper punches out and there are the meds for that day/time.  Every time of day has its own separate package, and they are in weekly cards with the date/day and list of meds in each little square.  Life. Saver.  This also eliminates a ton of confusion, because I have to fill my scripts in a certain order each month or some are refused–has to do with a prescription limit with Medicaid, and I previously had hand-drawn spreadsheets with dates and pill counts and pharmacy numbers… a nightmare and a ton of anxiety when oh, sorry, no meds for you! This pharmacy that does this is incredible about not only the meds they fill for me, but they also answer any questions and figure out how I get everything I need (there are four pharmacies involved).  Here you can see my method for keeping my IV Benadryl doses straight–I break them out of their sealed packages and make a labeled bag for each day that week.

It can be hard to keep track of doses–my whiteboard grid and a different colors let me note times, doses, etc.  No one else could follow my system here, because it’s just unreadable (to others) numbers, but I know what colors are what and what numbers are doses versus time.  The space on the side is there to jot notes as I remember things, because I tend to forget very quickly.

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This is a lifesaver!  My nighttime routine takes a couple of hours, and I can do it (podcasts help, if I only let myself listen when I’m getting ready for bed OR trying to wake up!).  But it’s really hard to keep straight what I’ve done already and what needs to be done.  It makes for much less anxiety if I can just glance at it and see!  They were made in rainbow order until I realized another way was better… but some nights I may need pain meds or Benadryl before I can even handle the rest, so I get out of order.  These have little Velcro bits on the back, so I can easily give myself a visual reminder that this step is done or not done.  I DO NOT change the color order.  That would break the world.

The master white board on the fridge!  It’s like a peel and stick–best $20 ever spent. Reminders, phone calls, refill dates, appointments, deliveries… all color coded!  And you can’t see it, but those magnets have Lucy on them!  You also can’t see just below this… a friend gave me a small notepad with a very lightweight clipboard, so I put magnets on the back of it and then on one side of a pen.  I have several white boards, so it’s easy to move around. I can add to grocery lists then grab the paper and bring it.

This is the last whiteboard–there are many for such a small space, but it lets me jot reminders where I will then remember I wrote them at all! I tend to have my left hand available to write on this one at night, so don’t expect anything resembling words… and sometimes I can’t decode them the next day, either.  But mostly, this is really helpful.

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I know, what in the world is this about?!  Well, it’s my “you get a balloon when you’re on TV” because I say I do!” balloon.  And it’s the mirror reflecting my wall and my Beads of Courage.  But all that chaos on the mirror is my work-in-progress to-do and have-done list.  Writing, editing, work, etc–It keeps track of loose ideas for writing, what i need to do, when I might tackle it, and what I’ve done, including my hours for work.  It’s much, much easier to read in real life than it looks here.  These are Crayola Window Crayons and they’re amazing.

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I adore technology for the ways it makes my life easier.  My wheelchair has a new technology option called Smart Drive, which means I still have an ultra lightweight manual chair (under 20 lbs), but I also have a battery and wheel that power me at whatever speed I push off to go, changing with me as I slow down or speed up like I would in any manual chair.  This is incredible stuff that saves me so much energy, and that’s the name of the game for keeping me in working order.  I also love technology for how it has really opened communication up to me.  And it’s even made many of my friendships possible.  I really, really do love the tech options available.

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But for me, anything like a reminder… calendar, to-do, remember this, check before you go… for a long time, I tried to use my iPad for those things, because–well, because I had it and the option is available, so why wouldn’t I?  I finally realized that I HAVE to be able to see those things to ever even remember I have a list!  I just never check the digital versions, because they don’t jump out and remind me they’re there.  Alarms are good in theory, but for one, I get really anxious when I know there will be a noise, and for two, I turn them off and then never go back!  Having it right there looking back at me reminds me all the time!

In my life, a lot of the strategies are for my medical stuff, but that’s because it was the major hangup on the way to success.  I do need other supports from other people, but we have that figured out.  What we couldn’t figure out was the overwhelming medical stuff and how I could manage that–I have to keep track of each item, the delivery dates (from four pharmacies and six suppliers), how much I have left, and dates/times of every med, IV med, tube feeds, IV fluids, insulin pump site change, ostomy change, central line dressing change… see why the little girl who “comes in like a gust of March wind and throws all her things helter-skelter” more than met her match in this beast of an organization project?!

But it was my match when we went at it with all the wrong approaches.  Telling me to “clean up” is like me telling you to write me a poem in Greek… it’s way too broad and too big with way too many steps.  Try telling me to pick up any paper, hang up clothes, fold laundry, vacuum… you’ll get a much better result.  So, the first thing was learning that being 18 or 21 or 25 was meaningless here.  The second part was learning that it wasn’t a “can’t”… it was a need for a different approach that build on my strengths.. if you have a marker or crayon, I will always be happy to use it even if it’s writing an appointment!  I do really well with color as organization.  I need less space, less stuff.  I need visual supports that are always staring back at me.  I need routine, and then I will stick to it with utmost precision and have a lovely time doing it.  We had to figure out HOW I would be able to do it..

And then I could…

And I did…

And I will…

Again and again… watch me!

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(My Beads of Courage again, representing about a year’s worth of hospital stays, surgery, procedures, ER visits, etc–with letter tiles that spell out “I can and I will–watch me.”   Since I took that photo, I started grad school, finished grad school with a 4.00, spent 15 months in a nursing home, left the nursing home and now it’s been a year on my own. I had been resigned to a life of movies and crafts, and now, I work more than I do anything else, doing what I love to do. When I laid out those tiles, I had been on an indefinite advocacy break, because I didn’t feel up to it… physically, I only wish I felt now how I did then, but I’m writing, editing, speaking, serving, and even appearing on TV… nationally.  I would rather spend my life fighting to do what can’t be done than sit back and wait for someone else to find me a way… I know I’ll find so many good things in the fight.  And besides, I haven’t found a can’t yet that didn’t end up as a could and then a did.  Say what you will–but then let me try.)

Ten Ways Autism Makes Me Different

1.  I remember conversations from when I was two and phone numbers I haven’t seen in two years.  But I need direct support in the grocery store and when crossing the street.  The first sounds impossible and the second ridiculous to most people, but it’s the only normal I know.

2. Just because I have the words to type it doesn’t mean I have the words to say it, and when I do say it, it’s rarely as I wish I could. Sometimes, I can explain my quirks; other times, I need a keyboard and some time.

3. I never like being too loud or interrupting or getting upset at a noise, especially in public. It takes a lot of effort to manage my interactions and reactions–and sometimes I still fail.

4.  If I ask a question or say I don’t get it, it means I’m confused. Please don’t make me feel worse.  I don’t laugh when others flop at recalling a date or the spelling of a word–things that are effortless for me.

5. What may be slightly bothersome to you, like the waistband on a pair of pants, can ruin my day.  A sensory issue occupies every bit of my brain and body until it’s remedied, and it isn’t always easy to say what’s bothering me.

6. I try to treat others as I want to be treated, but since my wants are often different, I look rude or careless when I’m doing my best to show the same kindness I like to receive.

7. I am extremely sensitive to sensory input.  The world is almost always too much, so I have to regulate my body as I react to every passing car, beeping machine, barking dog, siren, and so much more.  It’s very hard for me to remember that I can ask for a break.  Sometimes I walk away, pull out my phone to type or look over favorite cat pictures, or disappear to the bathroom (if there are no hand dryers!).  I’m not being rude—I’m doing what I need to do to be able to be there at all.

8. I’m not a child with a precocious vocabulary.  I’m not an adult who refuses to grow up. The boxes built for typical society won’t work on me.  I’ll break them every time. Save those judgments until you know me.

9. I’m not missing out on normal; I’m happy with uncommon. I’m more isolated with another person than my cat.  A keyboard brings me closer to a long-distance friend than a lunch date ever does.

10. I’m different, not broken.  Sometimes my needs make it look like I’m not capable… but I don’t know how most people function with such forgetful memories and lack of focus.  Everyone’s brain has strengths and weaknesses. I am blessed to be surrounded by people who give me the support I need to be successful.  But I have gifts, too… just the right ones to help families understand kids like the one I was so—hopefully—all their lives are fuller.

Heart Words–Voiced, not Spoken

I’m a talker.  A gibbering, gabbing, chatterbox kind of talker.  I’m by myself nearly all the time, so, when I see people I know very well and the environment allows (like in the car), I… get it all out of my system!  I’m much quieter in chaotic places or with new people.  But my family?  Give those folks some credit for surviving 27 years (and then some) of me and my mouth!  It’s hard to be quiet when life is so exciting and there are so many new discoveries just waiting to be researched.

So, it’s not like I’m whining all the time, but even sunshine can be a little much when it’s going full blast without a cloud (or a breath) to give you a break from it.  There was a block of, oh, six or seven years when I was nearly silent; I was on meds that turned off my talking button. I could still think to myself, I just didn’t say much of anything.  But other than that time, I’ve always talked a lot, and if your two-year-old asks for more information about the aphids from her Eric Carle book and if your six-year-old comes home on the first day of school and devours the entire year’s reading material that evening… you pretty much assume that she is saying what she wants to say.  You don’t worry about her being unable to tell you that she’s terrified, or in pain, or confused, or angry.  When she spends her Saturday memorizing English translations of 18th century German poetry… you do not worry about that kid’s language.

I remember a lot of my childhood, thousands of memories, but it’s easy to paint a broad-stroke picture of how I felt…

18 months

1987. I didn’t have the words to say “too loud” or “that’s itchy.”  But I still felt it.  I clung to the familiar for a sense of peace.  
I remember being at the Atlanta airport when I was about three, late at night, exhausted and completely done.  I didn’t watch where I was walking, though I was holding my mom’s hand, and I managed to walk into a giant concrete column and slam my forehead on it.  I lost it, total meltdown, and kept biting myself because I was so overstimulated and exhausted and past my ability to cope.  I had bite marks on my hands, and I remember people asking about them.  I didn’t answer.

1999.  I lock my arms, rigid aIMG_0885t my sides, a guard against the world coming too close.  I had ten more years before I would truly put words to my world.  I saw the only scary movie I’ve ever seen in sixth grade.  The fear contorted itself and then consumed my thoughts for years.  I was petrified of the dark, and I also feared threes–anything in threes.  I would check and recheck.  I’d have to peek around the shower curtain to scan the bathroom a certain way, sometimes dozens of times in one shower.  I slept with my lights on, and my mom would come in and turn them off once she thought I was asleep.  I could not sleep with lights on, so, for years, I hardly slept.  Once she turned them off, at least I was in my bed and not touching the treacherous floor.   I often slept on the downstairs couch–it was somehow safer. My mom got after me for years to go sleep in my bed. She never knew I had those fears or that they dominated my nights for almost ten years… until I told her a few weeks ago.  At the time, I said, “I like the couch!” Nothing more.

Me with Elsie... just after Christmas dinner and the chaos of cleaning up.  I was not sleeping; purring kitties are the best way to block sensory input!2008. After Christmas dinner and the chaos of cleaning up. I was not sleeping; purring kitties are the best way to recover.  Kitchen duty!  On holidays, we range from having eight to maybe fifteen people over, all family.  Mom always cooked, and now my sister helps.  When dinner is over, it’s sort of the routine for the women to clean up and the men to go watch TV again.  I’d have a comment about that except that the space won’t allow everyone to help, and it’s just our routine after all these years.  I typically stand frozen.  Everyone is moving, and being bumped is the end of the world–my world. I hate it.  If I’m overstimulated already, like at a holiday dinner, then being bumped means all bets are off and tears will follow.  “Lydia, you’re the only one standing there, come on, help us!”  It was maybe two years ago that I said, “If everyone would go out of here, I would do the whole thing myself, but it’s too much, don’t bump me!”  I wash the dishes and try to keep my eyes down so I can’t see the confusion around me.  I hate old food… and really, I hate a lot of brand new food, too.  I hate thinking of the germs.  Touching it, smelling it… but I’ll do that all evening if it gets me out of being bumped by someone else.   I’d still rather clean up on my own.  “It’s a family dinner, we all help out.”  But we’re cleaning!  We bonded over eating, or… you guys did.  Now, go finish bonding over TV and leave me alone to do this the right way and in peace!  But I didn’t say that.  Every single time, we go through this, and I’ve never said more than incoherent frustration and hand-flapping and ear-holding at nothing in particular, the whole noisy, clanking, bright-lights, crowded, food-stinking chaos.

My parents divorced when I was seven.  I remember when they told me, and I didn’t cry or even feel all that upset.  They got along very well, especially at that point.  They told me that they were very good friends but that there were different kinds of love, and that married people love each other differently than friends do.  Okay, got it.  My sister is almost six years older than me, and my dad was her stepdad (uh, yeah, my family is possibly the most complicated family tree ever, which is not in any way an exaggeration).  Sister was upset that I wasn’t upset… didn’t I get it?  Didn’t I get what a big deal this was?  That’s when I cried.  And I didn’t cry because I was upset with her but because I was afraid my mom and dad thought I didn’t care about them.  I was originally not all that upset because they were doing what they thought was best for everyone.  They were making that choice, and with my dad moving under a mile away, I’d see them both all the time.  I mean, Mom did my hair for school while I was at Dad’s.  I was okay, and I didn’t want to freak out and make them feel not okay when right then, they did.  My sister said I didn’t get it.  That was 20 years ago.  I remember it clearly, but even now, I would do the same thing… and maybe that was the wrong thing.  I often miss the social cues in those situations, but I really do feel the overtones.  Feeling back, I feel the same thing, my extremely matter-of-fact mom and dad explaining things to me like I was a real, whole person and not a baby.

Maybe I’d still be wrong with the reaction I had, and maybe I missed an obvious extreme sadness or anger underneath their words, but it isn’t like my parents to do that.  I’ve been called self-centered, rude, disrespectful, incapable of appropriate peer relationships, immature, disconnected, withdrawn, misunderstanding…

Family tree

I am cut from the fabric of my father
But the very threads that keep me
From falling apart altogether
Are reflections of mama in me.

They say I have my father’s broad back,
His hands for music
They say I’m blessed with a mind
That can tackle anything.

But I cannot survive on brains alone.
Without my mother’s eyes–
More than that, her heart—
I’d be forever lacking.

I’m told they couldn’t make it work
That some love is just friend-love.
But I, half him, half her,
Have made “them,”
My echoes of them,
Not just work, but sing
Not in two bodies–
but in half the space.

I’m here and I’m aware, fully, heart-wrenchingly, bursting joy and guttural fear aware of the world and the people, the hardship and the celebrations around me.  My body feels the world so intensely, and my brain is very busy trying to make sense of it all.  The explaining and reciting and scripting words come out easily.  They live in my brain, so it’s not a far journey to come out of my mouth.  But the feeling and relating and empathizing words detour to my heart.  They take time to form, because my brain has to connect to my heart.  My heart has to isolate those feelings, and then my brain has to filter out the static and the noise, the bright lights and itchy tights from the very same moments.  The hardest job is the one of figuring out which feelings are universal ones and which are the kind that are unique to me, and then I have to find universal words to be able to share them.  All of that takes time, plenty of still and quiet moments, and it takes a calmness that lets me tune in to the music and prayers and stories all around me that echo my own experiences and help me put words to it, words that other people understand.

My mouth is good at lists and rules and facts.  Mouths are good for things that only need to exist for a fleeting moment, voiced and then gone from right-now forever.  My hands are good for the things that simmer, long and slow, making their way to my fingers over weeks and months and years.  When my head and my heart convene and eventually find the words that make my head light up and my heart sing, they slide slowly into my fingers, the weight of them only really fit to be built of black letters so carefully crafted into word, one at a time, on a white screen.

I still get asked what grade I’m in, if I’m serious that I can drive, and no, really, you went to college?  Sometimes it annoys me, sometimes I want to get on my soapbox, but mostly, it doesn’t bother me very much.  Because unlike the sensory overload that makes people misunderstand, and unlike the words I speak that vanish the second I ay them, these words, the ones that are mine and are me, they aren’t about to go anywhere.  Good thing, because no one can say I don’t understand every joy and sorrow and how people love.  But really… I always did.

childrens museum word wall    love4lydia   imexcited