But then let me try…

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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)

Independence.

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.

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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.)

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