It’s not about the weight

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That’s me.  It’s an old photo, but I assure you that I haven’t changed much at all.  My weight has been very, very stable for a year now– within 2-3 lbs.  Keeping with my I-don’t-do-anything-the-way-everyone-else-does-things way, I’m going to come out and tell you that I weigh 200 lbs on the dot.  I’m 5’5.5″.   My BMI is just over 30 (31? 32?), making me clinically obese, by a hair.  Knowing that I don’t chow down on bacon double cheeseburgers and that I try to get as much activity as a nursing home lifestyle allows, I’m quite content with my body.

Yesterday, I had a much-anticipated appointment at the UPMC Transplant Center.  I have had type I diabetes for 22 years now, and basically, I’m experiencing severe complications… in my case, my GI tract is pretty much not functioning.  All those contractions that move things through it (peristalsis) have stopped due to nerve damage.  Doctors have started to do pancreas transplants in type I patients who have a profile similar to my own, specifically in those who have hypoglycemia (low blood sugar) unawareness.  I love to go take walks, but it’s dangerous, because I’ll pause to test my blood sugar and it will be, oh, 39.  And I’m on the curb, hanging out, sometimes waiting for an hour or more for it to come up.

The appointment started at 7:30 AM, so I was up at 5 and met my mom there bright and early.  They took my vitals… they measured me an inch short, and I was 207 on the scale (with several layers and shoes on).  I mentioned it to the nurse and she said to tell the doctor, that it would be fine.  The whole morning went very well.  We did a class as a bit of an intro to transplants, then my mom and I met with the pharmacist, two kidney docs (nephrologists), the social worker, the behavioral health specialist, and finally, the surgeon came in.

He said that he was going to cut to the chase.  My weight was a huge issue.  My BMI was 34 (again… measured short and weighed with shoes and such), and it had to be 30 or lower to do the surgery.  I said, well, I only get about 1000 calories a day, and I do exercise, so can you give me some guidance on what I could do to lose weight?  He said no, he couldn’t, that I would meet with nutrition though, and they’d basically magically figure something out.  Except, I’ve met with dozens of dietitians in my lifetime and no one has ever figured out the weight issue.  I’m solid, I’ve always been solid.  Despite my high BMI, I actually wear a size large or 14… I’m muscular and dense, and I always have been.  I told the doctor that my prealbumin (the best blood marker for nutrition levels) is only 11-12, and he said, “That’s actually quite good.”  Except, it’s not.  At all.  A normal prealbumin (ask any doctor) is above 18 and preferably above 20.  “Severe malnutrition” is below 9 or 10.  Mine is 11 or 12.  I am not well nourished.  He insinuated then that, if I were malnourished, I would be thin.  Of course.

My mom said, okay, okay.  So say it’s a perfect world and she loses the weight.  Then we can proceed?  Well, he went on, these surgeries do not make life better.  She will have to take medications forever, her immune system will be suppressed.  Yes, but right now, I live in a constant state of hyper-awareness because my blood sugars are SO brittle.  I was 534 last night and 41 and losing consciousness two days beforehand.  It’s never-ending.  He said that something in my story just didn’t add up– that he’s never heard of a diabetic who has unawareness of low blood sugars as well as very high blood sugars (seriously– any type one EVER.  Not even kidding!).  He asked why I live in a nursing home, saying that it doesn’t make any sense for a young girl to live there.  My mom asked, “Have you ever lived with diabetes and all her other issues?”  Basically, my parents were the go-to’s.  They were on call, 24/7, for assistance and ER rides… broken tubes, and pain, and GI issues, and bleeding, and DKA, and… they need to have a life too, and I needed round-the-clock-care.  He answered my mom (and this is when I started to get upset), “Ma’am, no I don’t, but frankly, neither do you.”  I told him that my mom took minute-to-minute care of me for ten years and that I did not appreciate that remark.  At all.

He moved on.  “These pancreas transplants only last ten years at best.”  My mom asked, “Oh, so you only do them on the elderly?”  “No, that is not what I’m saying.  Don’t put words in my mouth.”  Then what are you saying?  He was saying that they do pancreas transplants with kidney transplants.  Which is not at all true– they have a whole program for pancreas transplants alone!  Well, those are only for a very small subset of the population.  WHO?!  People who have hypoglycemia unawareness (HELLO?!) and… and what, doctor?  Whose BMIs are lower than yours.

So, we’re back to that.  Full circle.

The nurse, to say the least, was livid.  She has specifically cleared my height/weight with the doctor and he said to bring me in.  Funny thing… he had my chart all day, but he waited until the very last minute to decline me… only thing we can figure is that, this way, the center could bill for the whole day’s assessment.

We figure one of two thing: First, it’s a fact that UPMC is a non-profit who is anything but.  They had 20 executives who make over a million per year.  Their president made $6.6 million.  I don’t want to give information from the people within the company who have heard things directly, because I don’t want to “out” them… but believe me, it’s about the money.  I am a Medicaid patient, and when I receive care, Medicaid has a contract with the care providers and pays a certain amount, which is less than the actual charge.  A lot less.  Basically?  I don’t pay well.  What’s the point in caring for me?

The other possibility is that the surgeon may have read stuff in my chart.  One of my previous UPMC docs came out and said he thinks I”m feigning my illness.  Also, I have butted heads with two others within the UPMC system… one was really on their end in terms of responsibility, and the other kind of came down to social issues on my end.  You know how Aspies struggle with things like boundaries and either communicating too much or not enough?  No one had ever told me how much is too much to bug the doctor.  Now I know, and now I don’t do it.  I am very, very well-read about my health stuff.  Very.  And, if a doctor offers an idea that is either harmful (i.e., they want to give me WAY too much or WAY not enough insulin, or they want to double my pain medication doses when my pain doctor has explicitly said not to), then yes, I refuse.  If they offer an idea that I have already tried and has already not worked, I speak up.  The problem is that I do it in my super-direct Asperger’s way, and as I said, I butt heads.  All of this has lead to more accusations of mental health instability… when it’s truly a combo of Aspie communication style, Aspie social differences, and Aspie intensity of interests about a subject.

THIS is why awareness and acceptance matters.  I may have to find a way to speak to some medical students or health professionals or something in order to combat this whole issue, because it’s really unacceptable.  It’s a pancreas transplant for me, which would add years to my life (or at least add healthy years)… but it could be a life-saving heart transplant for someone else.  I’ve seen instances where people are denied transplants due to things like autism and intellectual disabilities.  In my case, it wasn’t a direct result of my autism but rather an indirect result.  

The plan, on my mind, is that we will wait for my genetics results over the coming months/year or so.  If I have mitochondrial disease, then we cannot transplant (it would kill me).  But, if I am cleared by genetics, then my mom thinks we should go to Cleveland Clinic (recommended to us by a UPMC employee who knows their stuff).

Oh.  As I left the Transplant Center, the nurse stopped me.  “By the way, honey, I weighed 207 on the scale this morning, and if I look like you, I’m doing just fine!”  I told her “right back at you!”  Bodies are beautiful, functional, and can be HEALTHY in every shape and size.  

Pocket Full of Therapy

On my Facebook page, I recently posted several times about my quest for just the right fidget.  I pick at my skin, especially my fingers, almost ceaselessly.  They bleed and they really hurt.  I’ve even gotten infections after picking the same scab… by infection, I mean MRSA, which really isn’t something to mess around with… and, six years later, the darn scabby place is still there.  Yeah.  It just has to stop.

It’s not intended at all to be self-injurious, and I don’t even know that it’s anxiety.  I think it started as anxiety but now, it’s just habit.  My hands need something else to do.

That’s where fidgets come in!  They give my hands something else to do.  I connected with Pocket Full of Therapy, which is a small business started by two pediatric OTs in 1989.  In other words, they’ve been at this since I was 2!

One of the OTs and I connected, and it’s been nothing but pleasure, interacting with her.  The ladies at PFOT choose the therapy items they offer (which go far beyond fidgets!) from their expertise in the field.  Their site is loaded with options but not at all cluttered or hard to navigate.  

They offer several options of my all-time-favorite fidget, Tangles!  This one, called a Therapy Tangle, is my favorite.  It’s just squishy enough between my fingers to be fun.  I keep it by my computer, always within arm’s reach, so that I can grab if I start to pick.Image

They also offer a Tangle Jr., which is perfect to throw in a bag or a purse.  It’s small enough that it’s not obvious; it disappears in your hands if you don’t want everyone to see you playing with a toy.

PFOT offers squishy mice and cheese… these guys are really stretchy and squishy.  They were the favorite of my fluffy cat, Tia, who thought the mice were for chasing… although, Tia is a real oddball and not the sharpest tack, so, she thinks everything is for chasing (even invisible things!).  

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With these items, my fidget needs have been satisfied!  PFOT offers items in many other categories, including computer games, writing tools, seat cushions, and more.

The ladies at PFOT have offered me a link, so that if anyone purchases a therapy item from this link, part of the proceeds go to me.  Hey– a dirt-poor grad student has to fund her Diet Mountain Dew habit, somehow!  But, really, I would set any funds aside for next year’s trip to the Autism Society conference in Indianapolis.

The ladies behind this small business are working hard to provide the best items for OTs, schools, and clients, and I’m happy to be able to work with them in a way that, hopefully, will be good on both ends!

 

 

 

I script with the best of them!

A friend of mine, who has a kiddo with Asperger’s, was posting about the oh-my-goodness-no-she-didn’t-oh-yes-she-did vaccine controversy.  One mom commented that she thought “any of those diseases” would be better than “what her son has to deal with.”  For me, there’s not a far jump from that kind of thinking to “better dead than autistic” (which I have actually heard people say, erm, write).  “Those diseases” were deadly… they killed millions.  But, oh, that would be better than autism.  When I made known my feeling offended, she said that, oh, but I don’t mean YOUR autism.  You’re oooobviously sohighfunctioning and my son he is basically, you know, not human, or something, right?  I mean, he’s ten and not potty-trained and he’s nonverbal, but I can see it in his eyes that he hates his life so obviously he would die to be normal.

Seriously this time… oh, NO.  She didn’t.

First, I pointed her to the writings of people who are intensely affected by autism… who are, like her son, nonverbal and may have struggled with activities of daily living.  Most importantly, I showed her that there are such people who are very content with who they are.  I didn’t say it, though I wish I would have… that maybe what her son hates is the way she treats him like he’s a nonthinking vegetable, when, in fact, he’s a very capable little boy.  Maybe she baby-talks to him when he’s writing poems or designing who knows what.  Maybe he wants to be a super-hero.  Maybe his favorite color is purple and she makes him wear blue.  I have no idea.  But… neither does she.  I am convinced that every person has within himself the ability to communicate.  Speak, maybe not, but there are so very may ways to communicate that don’t involve mouths and voices.  We have to find what works for that person.  Think you’ve tried everything?  I can be pretty creative, so try me.  No promises, other than to do my best for you.

Autism is often about deceiving abilities.  My friend attends a program designed to help develop motor skills.  The young woman working with her told her to pick a story book and write a sentence about it.  My friend is 20 and has autism and, well, she looks young, and socially, she acts younger than her age.  But, see… the girl is on grade level, academically.  She’s read Shakespeare.  She writes and edits, as in, to earn money.  Yeah, jobs.   

See Spot Run… 

“My words fly up, my thoughts remain below: Words without thoughts never to heaven go….”

Thankfully, she is good-natured and she and her mom noted the incongruity as something to be addressed before she starts next year.  Simple fix.  I would have been insulted, visibly so.  I would have felt patronized, and, well, you already know how I feel about that. I get that it’s hard to accommodate people like my friend and I… because we’re really not our chronological ages in every way, and yet, we don’t like to be all-out patronized.  It’s a tough balance to strike.  

Here’s a secret, though… actually, two of them.  First: it’s totally possible.  There are many people in my life who do a great job of accommodating my needs but honoring my intelligence.  Second: effort is obvious.  If you are trying and goof, hey, plenty of grace and absolutely no hard feelings.  If you’re simply too lazy, or even too uppity to think people like us matter enough to try… that doesn’t sit as well.  Some people might give you a piece of their minds; me, I’ll avoid you like the plague and grit my teeth through every interaction.  So, really, no harm done, right?

Oh, wrong.  First, that robs us of what could be a really neat connection between the two of us.  You miss out on getting to know a girl who will upside your ideas about more than a thing or two, and I will miss out on learning from what you know and do best as well as growing socially by new interactions.  Many might find that a paltry loss, but it makes me sad.  I’d rather the two of us put our heads together and work out what we need to do to respect one another.  We’ll both be better for it.

So, that situation set aside (although, we can never really set it aside because it’s so insanely important and deserves whole books on the subject)…. the other issue I took with the mom’s comment was with respect to the fact that, just by my posting, I was obviously super-duper-high-functioning and thus could not identify with anything her son goes through.

Bold, underline, italicize… Functioning labels suck.

I developed the idea, as a little kid, that everything in this world has a job to do.  People have many jobs, and complex ones at that, so we ought to be forgiving toward people who fumble and foible a bit, since they’re trying to juggle so very many different jobs.  But, hangers?  They have one job, which is to hold clothes.  So, when a hanger drops the same shirt sixteen times in the five minutes I’m putting away laundry, I’m liable to say, “Hanger, you suck at your job.”

As do functioning labels.  Their only job is to tell you something about a person in a nugget. 

Here is another nugget intended for the same job: “Lydia is a young adult with autism who excels verbally, struggles with changes in routine, and likes cats.”  Great job, nugget!  You just gave everyone a really clear idea of my areas of strength, those of weakness, and my interests.  A+ for you.

Here is another nugget: “Lydia is high-functioning.”  Sorry, nugget, but you don’t cut it on several levels.  First, that statement isn’t even true all of the time.  The first nugget is always true; this nugget appears true, usually, until, you know, we change plans and then it’s, uh, not-so-true.  Second, this nugget really isn’t very informative.  I’ll give him a generous C on validity and a D on breadth.  You really don’t learn anything at all about me from that little tidbit.  It’s just a label, like autism is a label.  If you hear that I have autism, how much do you really learn about me?  Squat, is how much, because every person with autism is totally unique.  A label, like HFA or LFA, really isn’t any more helpful.  But a super-quick overview of strengths, weaknesses, and interests?  That’s great info for anyone to have about a kid!

Now, even if high-functioning were a good way to describe me, all of the time (it isn’t), and even if it gave us helpful info (it doesn’t), there is a major logical fallacy in the mom’s argument.  The fact that I post on Facebook says absolutely zilch about my ability to do, well, basically anything else, at all!

There are autistics who are nonverbal who post on Facebook.

There are autistics who have cognitive disabilities who post on Facebook.

There are autistics who use wheelchairs who post on Facebook.

There are autistics who have purple hair, who hate cats, who have seven of them, and who want to grow up to be astronauts… all of whom post on Facebook!

And here I am, composing a blog post (which, by the way, any and all of the above-described autistics can do and have done, as well).  I’m in grad school.  I can drive.  You can make an argument.  I get it.  You can list all my strengths and then say, “You’re nothing like my kid.”

I give you yet another nugget… a conversation with my mom from today (and yesterday, and the day before that, and the day before the day before that…):

Me: Hi, Mom.
Mom: Good morning!
Me: Hows-a bees-a baby tees?
Mom: They’re good!
Me: Where did Goose sleep?
Mom: I don’t know where she slept, because I was already asleep.  I’m guessing she slept in her spot under my bed.
Me: Where did Tia sleep? At your feet?
Mom: Yes, she did.
Me: Did they wake you up for breakfast?

This goes on, during which process I inquire about the past day’s sleeping and eating habits and positions of each of my cats.  Every question must be answered.  There is much interspersing said questions with “she’s the Luciest Goose and the Goosiest Luce!” “Tia Marie Rose, my fluffy one!” “a white kitty and a black kitty!” “I have TWOOOO!” “Do you know how much I love kitties?!”

Every day.  Sometimes totaling a good ninety minutes. Yes, my mom engages this almost without question.  She gets it.  Some people feel loved by diamonds and roses.  Others feel loved by great acts of service.

I feel loved when someone kitty scripts with me.  There are not many people who love me and get me such that this is even possible.  It is pure joy and comfort and all-things-warm-and-fuzzy.

So, as a close to my final argument in the case against said mom’s claim, I say this: I have strengths, and my strengths allow me to do great things.  But, if you use those strengths to try to tell me that clearly, I am nothing like your child… I will say this:

Your child has strengths.  His strengths allow him to do great things.  It is your job, as his parent (as well as his teachers’, counselors’, therapists’, and so forth) to build on those strengths so that he can shine all his au-someneness just all the heck over the place.

Because he really can do great things.

Bites of Reality

My cousin, E, got married yesterday.  She’s 10 months older than me and we grew up together.  Her dad and my mom’s brother, my Uncle Bill, is one of the kindest, sweetest human beings I’ve ever known.  I mean, I love all of my family, and many of them are special to me in their own ways too, but Uncle Bill has this place in my heart that I really can’t explain.  So, seeing him give his daughter away and dance with her was just so emotional for me, as well as for the rest of my family.

In autism terms, I noticed a few things about yesterday.

First, out of the five of us cousins, I’m the last one to be paired off.  My older sister and older cousin, E (yes, I actually call her E and have since we were little) are now married.  The little cousins are 22 and both in fairly serious relationships.  And then there’s me, doing my own thing.  I often say that I don’t do anything the expected way.  Relationships are no different.  I don’t want to get married.  I do want to “be somebody’s person,” though.  If my health allows in the future, I foresee myself living with an autistic friend, someone with whom I can just sort of do life.  I can see being in a relationship with someone that I can help, and that person can help me, too.  We could have a life together.  Man?  Woman?  That doesn’t really enter into it.  I don’t want that kind of relationship.  I want true, long-term companionship.  I realize that the biggest issue will be finding someone who also wants that kind of life.  That’s okay.  I am willing to wait, and if it never comes my way, then I can honestly say that I feel quite fulfilled as things are.  I have several close friends, an amazing family, and not one but TWO kitties.  Life is truly good.

So, another autism moment was when I ran into someone from high school with her boyfriend (who also went to my HS) and I went up and made conversation with them.  The poor girl actually said at one point, “I’m sorry… I have no idea what to even say to that!”  Leave it to me!  I realized I was being awkward.  I felt the awkwardness.  But, despite my efforts to curb it, it just got more and more awkward.  Oops.  I got into the car and said, “Mom… I’m sorry, because I know you don’t think my autism is immediately obvious, but I just tried to talk to people and ohhhh my gosh.”  These two are fairly unique individuals themselves, so it wasn’t like I was trying to talk to your everyday 20-something.  Still… yikes.

The wedding was very small… I’d say 30 at the ceremony and 50 at the reception.  That made it do-able for me.  About 90 minutes into the reception, I looked at my mom and said that I was getting to be pretty done about now.  My health issues make it hard for me to sit upright in a regular chair for a long period of time, and even just being awake all day is almost impossible.  Plus, let’s be honest… I was watching a table full of people inhale large plates of prime rib while I had 4 mini-bites of chicken and a couple spoonfuls of mashed potatoes.  I could eat the cake, though!  It was delicious.  Anyhow, my mom told me that I’d done very well and we would leave soon.  I got to thinking, who, at 25, has their mom tell them they’ve done well at a wedding?  

My sister and I sort of got into it recently because I didn’t have a gift for the wedding.  I have only been to one wedding in my lifetime (that was four years ago), other than my sister’s, so I wasn’t aware that I needed a gift.  Not to mention… I have $0 in my checking account and $2.15 in my savings.  Gift?  I would have made something, had I known (I’m fairly crafty and artistic)… but I didn’t know, so I wasn’t prepared.  My sister said that, at my age, I am an adult and have to take care of this stuff myself.  She frequently tells me that I don’t have to ask my mom’s permission for things or even her opinion, to just do it.  Well… I hear her, but I’m not really 25… my brain isn’t.  Intellectually, for sure; I was 25 when I was about 12, in that sense.  But developmentally, I’m probably… oh, 18-19.  That’s a far cry from several years ago when, following a regression, I was trapped in childhood.  But I’m still not ready to fly solo.  I am making progress, but I’m not there yet.  It’s not something that I can just choose to suddenly grow up.  You cannot choose and it cannot be rushed or even faked.  

We were getting ready to go yesterday.  I had woken up in sensory overload (go figure that one out).  Everything was itchy, scratchy, bright, loud, and on my nerves.  I was dropping everything.  I was sweaty from the hair dryer and sticky from my makeup.  My bra didn’t feel right.  I was hungry but couldn’t have my feeds on because they’re cumbersome.  Then my mom and my sister got on me about my purse… it was a day purse, not a wedding-approved purse.  I said that I needed “stuff.”  What stuff?  Well, my medical crap, but also space for my iPad.  My sister said that I do not need an iPad for a wedding.  “Mom said I could read!”  “LYDIA!  YOU CANNOT READ AT A WEDDING!”  But Mom said!  What will do I do if I can’t read!  Then it was back, Mom does not decide for you…

The issue was changing the plans at the last minute, more than anything.  As it turned out, I left my iPad in the car and didn’t even read at the reception because it wasn’t loud or super crowded.  

I love being around my family because they never treat me like I’m less of a person for being who I am.  They knew me for 21 years before my diagnoses, and the label didn’t change anything for them.  They say, “I always knew something was different….” but they’re really supportive!

No patronization, just accommodation!

There can be a fine line between accommodating someone’s needs and patronizing them.

But it’s not a line like the one on the right side of the road that you can only-sort-of pay mind to as you cruise along; it’s much more like the double solid center line–you cross it, you run the risk of serious trouble.  Unlike the bright yellow against the blacktop, though, it’s more like a dark gray… it can be very difficult for the a person to tell whether his words or actions toward another are patronizing or just accommodating.  For the one on the receiving end, though, the difference is obvious.

I live in a nursing home.  I am decades younger than the next youngest patient.  As far as I know, there is only one other patient on my floor of 56 beds who may, sometimes, know what day or even what year it is.  My roommate is in her 80s and is one of maybe three people who carry on any sort of conversation; she has some dementia and repeats herself and loses words a lot, but she is pleasant and kind and we get along very well.  Many of the people here seem like bodies from which the mind has long since fled.  

There are a couple of nurses who treat all the patients like children.  One of them always comes in with a very sing-song voice.  “Honey, it’s time for your meds, o-kaaaaay?!”  Every shift, to every patient.  I hear her go up and down the hall.  Another nurse was being trained and came into my half-a-room this morning, saying things like, “Oh, my!  Somebody sure does like shoes!” and “Well, don’t we like pink!” and “I heard you get to go out today!  Isn’t that special!” I had just woken up and had to leave in a limited amount of time, so I was working hard to get through my wake up routine (don’t you dare mess with my wake up routine!).  I said, “I’m sorry but I’m not awake and really don’t feel like talking.”  

Which was totally a way of getting out of the situation, because the truth is that I just don’t know how to deal with people who patronize me.

It was obvious.  She was trying to make conversation, which is fine, but dude, unless you’re a Diet Mountain Dew or my Lucy-Goosey-Gander, I don’t want to converse with you until I’ve been up for an hour.  Even my superhero of a day nurse who usually wakes me up knows not to get too chatty, too soon, or I just tune out.  But the tone of her voice as well as her choice of words made it really obvious that she was treating me like I was about five years old.

Now, here’s the thing: I’m 25 but I’m not… really… exactly an adult.  I was in the car with my sister this morning and she asked what I’d gotten a family member for her wedding.  Huh?  I need to bring a gift?  She was flabbergasted and could not stop repeating, “How do you not know this?  You have to know you bring a gift to a wedding, Lydia.”  Well, I’ve only been to one, and that was four years ago… so, no, sorry.  I wasn’t aware.  I told her later that, yes, chronologically, I am an adult… and mentally, I am getting there and making progress, but I’m just not there yet.  Any attempts at rushing me will. not. work.  I am not able to will my brain to develop faster than it is going to develop.

Thus, sometimes, I need accommodations.  

Accommodations look different for different people and even for the same person in different situations.  In school, a student might need extended test-taking time.  He might need the test to be read aloud.  He might need to use a colored overlay to help his brain process the visual input.  He might need to sit in a specific location in the classroom.  He might need sensory breaks.  Maybe he types instead of writing my hand.

In conversation, a person with autism might need you to speak more slowly or make your point with fewer words.  It helps if a conversation partner speaks in such a way that doesn’t beat around the bush, especially if the information is important.  If it’s important, spell it out, and it might help if you double check for understanding before we part ways.  

Accommodations at work could mean anything from no fluorescent lights to a different kind of chair to extra time to get up and walk around.  It could mean employing alternate forms of communication (email instead of phone calls, for example), asking for advance notice of schedule changes, or working with a job coach.  

There is absolutely no way to enforce accommodations in friendships… and I will only speak for myself on this, but if a friendship with me is going to work, the only way is if there is a lot of grace on both sides.  My NT friends do things that make absolutely no sense to me and sometimes seem pretty rude… and guess what?  I DO THE SAME TO THEM!  The most important accommodation is that we both give one another the benefit of the doubt and trust that whatever we perceived to be wacky from the other was, in truth, meant well.

Note: Absolutely none of the above-listed accommodations involve talking down to someone or limiting his potential to exercise agency, make reasonable choices, or show his ability.  That is called patronizing.

The way I write about it, it sounds like there is a really obvious difference between the two, but there isn’t always.  What do you do when you’re not sure how much a person understands of what you’re saying to him?  Do you use simpler vocabulary?  Is that accommodating or patronizing?  The answer is yes and no.  Personally, I would speak to every person with autism– EVERY person– as if he understood every word I say.  How many times have we heard stories of families who talk about their nonverbal children in front of them and, when the children grow up, they communicate (through alternative methods) that they understood every word?  Don’t make that mistake.  Assume they understand everything you say, and talk like they understand it.  Expose them to the fully glory of language.  When you’re finished saying whatever it is, offer a brief summary at the end.  Thus, you expose the person to language but you also communicate in as simple a way as possible… avoiding patronizing but accommodating for the person’s needs.  

Adults are not children.  Young adults with autism who have complex medical issues and live in nursing homes, who love pink and Disney and kitties, are not children.  I am an adult who needs certain accommodations but who will write circles around most anybody and give any nurse a run for her money on medical knowledge (don’t worry, I don’t go around making nurses angry with me all the time!).  My point is that it is not always necessary to “slow down, and don’t use any big words!”  The elderly people in my nursing home deserve dignity and respect.  They deserve privacy, they deserve input in their care when possible, and they deserve individuality.  These people have lived long and successful lives, and they deserve respect.  I refuse to let anyone strip me of those rights, and it upsets me to watch the other residents lose theirs.  It also upsets me to watch others with autism be treated like they are unintelligent, when they are intelligent and capable.

I feel like I should have a slogan–no patronization, just accommodation!

Beware the Special Interest!

 

I love medical stuff.  Always have.  From a very early age, I wanted to be a surgeon.  In middle and high school, I volunteered at the hospital… and sometimes, they’d let me scrub in and watch surgeries here and there.  When I was 16, I attended the National Youth Leadership Forum on Medicine in DC and spent 10 days doing all medical stuff, all the time.  I watched Discovery Health, exclusively, for several years.  Suffice to say, medicine is one of my lifelong special interests.

I was diagnosed, rather traumatically, with type I diabetes at the age of 3.  My blood sugar was almost 1000.  I was delirious.  They held me down and tried to get an IV line started for I don’t know how long, but it was a long time, and I spent a week in the hospital.  The thing is… I never cried, never fussed, never really complained.  That’s not normal for a three-year-old who just went through something like that, but because of the ASD, I wasn’t able to express myself.  Obviously, my life changed radically from that point.  I was able to test my own blood sugar from the start, administer my own shots by first grade, and accurately count carbohydrates in just about any food by the time I was ten or so.  I got my insulin pump when I was 12, and I was totally independent.  

My blood sugars have always been really brittle.  Up, down, left and right, so hard to get any sort of hold on them.  But, life plugged along, and I dealt from day to day.  It didn’t really bother me, because it was hard for me to remember any different.

As we rung in 2012, I started puking every morning.  Over the next few months, I would wake up and throw up every so often until about 5 PM.  I started gagging on almost everything I ate, even favorite foods.  It was a battle to get anything down and keep it there.  I was so nauseous that if I thought about taking a shower, I would throw up… because the shower is in the same room as the toilet, and the toilet always triggered vomiting.  So did cleaning the cat litter, or doing the dishes… you get the idea.  

Then, the pain set in.  Holy freaking I don’t know what, it was awful.  I mean, it is, because it never really left.  Long story short, turns out my stomach is paralyzed, so food basically sits in there until I throw it up.  Also, I have nerve damage to my stomach, hence the fire.  And spasms.  Thank God for my feeding tube.  It’s a life saver, quite literally.  The condition is called gastroparesis, and it’s a bucket of fun.

Things kind of continued down hill.  Some of my symptoms make a lot of sense.  Like, I have hypermobile joints and incredibly fragile skin… that’s due to Ehlers-Danlos Syndrome, which means that my body lacks collagen, or the “glue” that should hold me together.  Causes joint pain and sometimes ruptures, of which I’ve had a couple.  I also have issues with my autonomic nervous system, so my heart rate, blood pressure, and temperature can be wacky.  My heart goes into a nasty arrhythmia, which is supposedly unrelated to everything else.  I get migraines.  The list goes on.

At this point, things will go one of two ways, depending on the results of genetic tests that will take roughly a year, if not longer, to come back.  If I am genetically okey-dokey, then I’m planning to pursue a pancreas transplant… which would mean no diabetes.  Yes, all the other stuff would stick around, but it would take the level of scariness out of it and I could probably get away from the nursing home.  Option number two is that, if I do have something genetic or mitochondrial, then this is kind of… well, I’ll be sticking around here.  Which is okay, because I’m still going to school and will someday work from my hospital bed, if that’s what it comes to.  I’m not going to let this stuff limit me.

Medical stuff is fascinating to me.  Like any other special interest is for an Aspie, it consumes me.  The problem, when you’re consumed with your medical stuff, is… well, there are many.  One is that your doctors begin to think you’re a nut case.  I do not invent illness (which I’ve been accused of doing many times).  I do not lie about my symptoms, either.  Am I utterly fascinated by them?  You bet.  Rightfully so, too; I’m a really unique case.  Am I utterly fascinated by almost anything I can get my mind around?  Yeah, I tend to get a bit absorbed, to say the least.  But when you talk endlessly about health stuff, people get really, really weird.  And you get diagnoses like Munchhausen’s… and then, there is really nothing you can say or do to prove anything to anybody, because they can’t feel your pain and nausea and whatnot.  Test results, which show just why you’re feeling sick, don’t really seem to matter anymore, because you’re accused of skewing them.  So, you’re kind of up the creek by that point.

Thankfully, the people at the nursing home believe me.  I have a day nurse, C, who seriously has to be Superwoman in disguise.  She’s incredible.  She knows me very well; she comes in every morning with my myriad of meds just the right way, cold Diet Mountain Dew in hand, and we talk about her mama cat having babies and my sweet nephew and everything, everything in between.  She trusts me.  I appreciate that.  But, when she called my GI doctor to tell him how serious my motility issues had gotten, he told her that I was feigning my illness, that it was impossible for one person to have so many wacky things happen.  My body apparently doesn’t read the text books.  It doesn’t do anything the way it “should.”  Way to be sick wrong.

I have appointments with two different GI docs in a few weeks, and a new primary care doc this week.  I am desperate for someone to help.  The most important hurdle will be whether they believe the opinions of my other doctors expressed in my records.  

Even my family isn’t quite sure what to think.  My mom was the first to say that I have Munchhausen’s.  There was a time that she wasn’t even sure that my pain was real.  It’s terrifying to have that kind of pain and have no one believe you.  Terrifying.  

I guess this message is in hopes of a couple of things.  One is to warn my fellow Aspies… watch out for how your interests come off to other people.  Check in with someone you trust before anyone says anything.  Don’t let it be too late.  The second is just kind of wondering if anyone has any ideas or thoughts about how to approach the new doctors so that they believe me.  I still don’t understand why so many test results don’t prove things to be the way they are.  Sigh.

And, by the way, I sincerely tried to represent any and everyone’s thoughts, words, and opinions as they meant to convey them as I wrote this.  I have no hard feelings toward anyone (except maybe the GI doctor!), and I wrote it with an understanding that they can read it.  I hope that, if they do, they feel that I have represented them accurately.  

Dear Supermom

I wrote the following to my mom, but I hope all the other moms who read it can do so and hear their children’s voices.  We may not be open about our feelings and appreciation, but I promise that our silence is not because we don’t care.  On behalf of children everywhere, thank you for all you.

 

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Dear Mom,

Your secret is out.  I found the cape in your closet.  The mask too.  And now, the whole world knows the secret behind your indomitable strength, patience, and grace.

I should have figured it out years ago.  Otherwise, it would just be impossible, the way you fight battle after battle, listen to script after script, and clean up oops after uh-oh, all without blinking an eye.

You never stopped trying to connect with a child who wasn’t easily reachable.

You are The One who can stop a meltdown in its tracks.

You know all the routines, inside and out, and you know better than to play with them, because then, they lose their power.

I’m sorry for all the times I took for granted everything you do.  I didn’t know just how special you are.  (I’m not sorry for all the times I asked you to stop dancing in the grocery store, though; that was for the sake of your own reputation!)

I hope you know that when I introduce myself to people who know you already, I could not be prouder than to start by saying that I’m your daughter.  I want everybody to know that I am your child, because I consider it an honor.

For all the times you drive out of the way for something I wanted when you really just wanted to get home and rest, for all the packed lunchboxes and early mornings, for all the stains you get out and the school conferences you’ve attended, I thank you.

I thank you for believing me, never giving up on my ability to overcome whatever is in my path.

But more than that, I thank you for giving me a role model.  You’re true to yourself and you’re selfless, and that is the best example for a child to follow.  I hope that, year by year, I become increasingly like you.

Except, I hope I didn’t get the gene that codes for dancing in the grocery store.

Love,

Superkids everywhere