Saint in a Wheelchair

Sometimes I think our lives consist of one misconception after another.  This is mostly true with things people don’t have personal experience with.  For example, I have the misconception that all politicians are crooked liars who would knock their own mothers off a chair if they thought she was sitting on a dollar.  Of course, this misconception happens to be true, but still.

Nowhere is the misconception problem more prevalent than in the world of special needs.  I am always fascinated by how people view individuals with special needs.  As both a mother and a sister to people with severe disabilities, I feel I can speak with a reasonable amount of knowledge on this subject.  (Disclaimer: I have no doubt that there will be someone who will tell me that every single point I am getting ready to make is wrong, and that their experience is the exact opposite of what I am saying, and that the person they care for is an angel.  Allow me to say, in advance, good for you.  Get your own blog.)

Usually I talk about my daughter, but this post is about someone else: my sister Mindy.

That’s her, several years ago.  She has spastic Cerebral Palsy.  She was born extremely premature–today they are called “super-preemies,” but when she was born there was no such term.  She had a twin sister who lived for almost eight months in the hospital.

Everywhere we go, I run into someone who knows Mindy (and a thousand curses to all of those who ask if I am her mother.)  She also attends church, and has for most of her life, so that adds another demographic to the “people who know Mindy” population.  Everyone person who knows her loves her, and they think she is God’s angel right here on Earth, a blessing and an example of how to live a humble, accepting life.  They pet her and use words like “poor little thing.” Worse, they talk about how wonderful I am for taking care of her, how patient I am, and someone even told me there would be a jewel in my crown.

Crown?  I think I must have misplaced it.  Probably it fell off when I was banging my head against the wall.

Mindy can be a truly remarkable person.  For most of her life, she was a very calm, mild-mannered, unassuming person who smiled most of the time.  But things have changed as the years have gone by.  She’s having trouble with depression.  She takes medication for mood stabilization and to help her sleep.  She has poor impulse control and some OCD stuff.

In other words, she’s just a human being.

To assume that she has super abilities to be patient and accepting is to dehumanize her.  No one can be perfectly patient and perfectly accepting all the time.  Add into it that she has more reason than most people I know to be depressed or angry, and you see the problem.

Mindy’s body is her enemy.  Her mind is actually quite good.  I won’t say that she has the same cognitive ability as a so-called normal person, but certainly she has more than, say, members of Congress.  Anyway, her mind is pretty much okay, but her body is her prison.  It won’t move like she wants it to.  She can’t do anything for herself.  Anything that requires muscles (including eyes) is compromised.  But I’m not telling you this to get you to feel sorry for her.  There are some things I think everyone should consider, not just about Mindy, but about any special needs person you may know.

  • Mindy wanted all the same things we all did–a job, marriage, kids–just an independent life.  She is 32 years old now, and she has to cope with the fact that she can’t have those things.
  • It’s not her job to be a  blessing or set an example for you.  If she does, fine, but if she doesn’t, that’s fine too.
  • She is just like everyone else.  She has mood swings and tantrums.  She has good days and not-so-good days.  Again, I think that just means she’s human.
  • The relationship I have with Mindy is a lot less special than you probably think it is.  We are sisters.  If you have a sister, I doubt if you need any explanation.  We argue about something every single day.  She calls me some not-so-nice names very frequently.  I, having only slightly more self-control, don’t call her names, although they certainly cross my mind.  Once, when we were teenagers, we were arguing over a television program.  She turned in her power wheelchair and charged me.  She rammed my rocking chair with the force of a rampaging bull.  Shouting and tears followed.
  • She doesn’t like it when people talk to her like she is two years old, which is often.  They pet her head and get right in her face to talk.  Would you like it if I did that to you? It would be ridiculous if I did to you, wouldn’t it?  You’d think I had lost my mind.  Yet it’s okay for someone to talk to my sister that way.  Remember, she is 32-year-old woman.
  • She understands everything you are saying.   It might take her a long time to respond because it’s hard for her to get her mouth working the right way.  People will ask her a question and then keep going without waiting for the answer.  They assume she can’t talk.  In short, they overlook her.  She’s almost an inanimate object to them.
  • Lay off her wheelchair.  That chair is a part of her body.  She is in it all day, every day.  When you touch it or lean on it, it’s the same as if you were touching her person.  It’s a part of her personal space.  Yes, I lean on it and hang my purse from it, but I’m allowed.  (Maybe that’s why she calls me the bad names.  Hmmm…..)
  • Just because she is sitting down doesn’t mean she is less than you.  She’s in this world the same as the rest of us.  She deserves the same rights and considerations as all of you ambulatory folks.

I think what it boils down to is respect.  Respect her, and others, as people.  They are not saints, or angels.  Some of them might be super-sweet people who never have a bad word to say, but some of them might be short-tempered and irritable (like me.)  In short, they are varied,  because they are people, and no two people are just alike.  They want what you want–to be treated with respect and understanding.

And to watch their program on TV.  If not, they might just knock you out of your chair.

 

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Included


I was talking to a friend of mine this morning who is a teacher, and the conversation turned to the topic of “inclusion.”

Now, for those of you who have not been baptized into the world of special education, allow me to submerge you.  Inclusion is when you take special education children and put them in regular education classrooms.  That, of course, is a an extreme oversimplification, but hopefully you get the idea.

My sister, who turned 32 back in September, started off her public school education in a so-called “special” school.  It was a school made just for special needs kids.  Let me say something very clearly—I am not talking about kids who need extra help in math or reading and go out for a couple of classes a day for special education.  To me, that’s a whole other issue, although I could give you a good argument about why inclusion for those kids is misguided, too.  For now, the kids I’m talking about are kids like my sister, and like my daughter.

Where was I?  Right–Mindy.  She went to a special school.  This school was full of kids with varying levels of disability, but all of them were considered pretty severe.  Lots of kids in wheelchairs, kids who couldn’t talk, kids who were very challenged.  In this school, there were whole classrooms stuffed with physical therapy equipment.  There were therapists on staff all day who stayed at that school.  All day.  The teachers were qualified special education teachers.  The aides were special ed aides.  They knew first aid.  They knew how to deal with seizures, and how to administer Diastat.  Don’t know what that is?  Tough.  I’m not telling.  They worked on skills which hopefully made the kids more functional, and as independent as possible.  For all of our efforts at home, it was an aid at this special school who finally potty trained my sister.  She fit in there.  She wasn’t an object of pity–she was a member of a group.  Those were her peers.

Then one day some bleeding heart politically correct politician decided that these kids were segregated.  It was wrong to keep them separated from the regular ed kids.  So they mainstreamed them.  They put them in regular school.

Okay.  We can deal with that.  Right?

Wrong.

Things started to slip through the cracks.  The funding of special ed programs became much more ambiguous because they were now all mixed in with everything else.  Consider the following: the board of education in our county requests permission to bill WV Medicaid for services provided to my special ed daughter.  In due course they receive reimbursement from WV Medicaid, and they then put that money back into special education.

Hahahahahahahaha!   Whew! That was funny, wasn’t it?  Of course they don’t put the money back into special education.  They put it into the general fund, where it can then be spent on football uniforms for the local high schools. (Or whatever.)  I called the state department of education to see if this was legal, and after one thousand transfers and a bunch of hem hawing, I finally received the most unsurprising answer in the history of the universe: there is no policy dictating what the school boards do with the money they receive back from Medicaid.  So I withdrew my permission for the board to bill my daughters card, and I review all of her charges each year to make sure they don’t.  Because there is a policy which requires my written permission for them to bill Medicaid.  I happily deny that permission each year.

I’m getting off topic a little here (as usual).  My point was inclusion.  I don’t understand it.  Who are we trying to make feel better?  Kids like my daughter get absolutely nothing from a regular ed classroom.  A regular ed teacher is not qualified to teach her.  Instead of learning to be functional, suddenly now it’s important for her to know the days of the week.

Don’t get me wrong.  Knowing the days of the week comes in handy, especially on Friday.  But she’s not there yet.  She may never be there.  And I need her to have a teacher who understands that.  What I don’t need for her is a babysitter.

Because that’s what it boils down to.  That’s what happens to severely challenged kids in the regular ed environment.  They are just there.  People say it helps the other kids be more accepting.  Great.  Guess what?  It’s not my daughter’s responsibility to teach other kids to be accepting.  That’s their parent’s job.  Everyone always loved my sister, and she got a standing ovation on her graduation day, but so what?  Everyone liked her, sure, but she was still left out of everything.  Why?  Because she had no peers there.  There was one other kid with her, and thank goodness he was there, or she would have been completely alone.  We all need to feel like we belong, like there are others who are like us and understand a little what it’s like to be us.  Why should we take that away from special ed kids just to make everyone else feel good about themselves?

As far as parents who support inclusion, I don’t know what to think about them.  My best opinion is that they think maybe their special ed kid will be able to learn more in that environment.  My worst opinion is that they are trying to convince themselves that their kid is like everyone else.  Here’s the bad news: your kid is NOT like everyone else.  They don’t fit in.  Those regular ed kids are NOT their peers, and that will never change, even if they sit in that regular ed classroom forever.

My daughter is special, and she requires special education–all day, every day.  She has to have her diaper changed.  Is the regular teacher going to take a break from her teaching to do that?  The county doesn’t like having a designated aid for a special ed student, so what other option is there?

Let her go to music class or gym with everyone else if it makes everyone happy, but she has no business in a regular ed classroom.  Period.  I’m her mother.  I’m not worried about being politically correct–I’m worried about what’s best for her.

***Note:  my daughter happens to be in a very good educational situation right now.  However, I’m not going to go into it.  I have my reasons.  Trust me.  I’m just using her as an example.  That’s the price of being my kid, I guess.

Mourning in Never-land

Recently, the mother of a special needs child wrote a post that went viral on the Internet.  This post wasn’t triggered by the blog, but rather a follow-up comment by the author.  She remarked that someone had told her she should mourn her daughter and get over it (that’s my paraphrase.)

Now, her daughter didn’t die–she was born with special needs, so to some, the word “mourn” may seem like an odd one.  But when you have a child with special needs, you do mourn.

You do.

To some it may seem like self-pity.  I don’t know–maybe it is.  Some people might be tempted to judge me for saying what I’m going to say, but I’m only telling the truth.  When, as a woman (because it’s much more difficult for a man,) you decide to have a baby, plans start to form in your head.  It’s silly, but you start thinking about what they might do or be, and what they might look like.  Then, you find out it’s a girl.  You start to think about weddings, and grandchildren.

Then at some point, all of that is over.  Forever.

Never, ever think that I compare this to the actual grief of losing a child.  It’s different.  But it’s bad.  It hurts.  And what’s more, the mourning happens over and over as the years go by.

So-called experts talk about the grief process.  They name the steps: denial (Maybe she’s just a little behind.); anger (Why, God? What did we ever do to you? What did this helpless little baby every do?);  bargaining (Whatever you want, God, okay? Kill me, whatever. Okay? OKAY?);  depression (What now? How do I face this? Do I even want to try?);  and acceptance (I’ll get back to you on this one.)  But here’s the thing–the grief process can’t be listed neatly into five little steps.  This also implies that there is an end to grieving, and I don’t think there is.  I don’t think the pain ever really goes away.  It just changes, and hides, and then pops up unexpectedly over the years to hit you again.  And again.  And again.

Almost eleven years ago, there was a little girl who was supposed to be born.  That little girl was going to blaze a trail.  Super smart, independent, and ready for anything.  She would get married some day and give her mommy a brood of grandchildren to fuss over.

That little girl was never born.

Instead, Evelyn was born.  She’s blazing a trail in her own way, and I can’t imagine my life without her.  But there are some things I had to let go of–some things I had to mourn, and that I’m mourning still.

I’ve been through every one of those stages, and more than once.  Even denial, which I’ve always thought I was immune to, has appeared over the years, usually in my obsessive quest for a diagnosis.

Most of my grief is tied in to the things I feel like she’ll miss out on.  All of the nevers.  She’ll never get married.  Never have kids.  Never go to college.  Never have a boyfriend break her heart.  Never, never, never.  I’ve had to let each of those things go, one by one.

Sometimes, that little girl who I thought was going to be born all those years ago haunts me.  She skips up and down the toy aisle at Christmas time.  She’s out running with her brother on the soccer field.  She talks incessantly to me like her brother does.  She gets into shouting matches with him, and sings along to songs on the radio.  She’s worrying about clothes, and starting to talk about boys.  I catch glimpses of her sometimes, but when I turn to look at her, she’s already gone.  I have to let her go again.

So you mourn.  I think as the years go by, I will learn to get over all of that.  Certainly I can “accept” it more now than before.  But I’m a firm believer in what I said–that pain never really goes away.  You learn to live with it, and yes, even accept it.  I think that’s what acceptance really means.  Not that you’re okay with the way things are, but that you realize you can’t change it, and you learn to live with it.

Living with Evelyn is the easy part.  She’s the joy of my life.  She brings something to us that I can’t even explain.  She doesn’t know or care about the things she’s “missing out” on (according to me.)  She gives me a good example of how to live–live for the moment, forget about yesterday, and don’t worry about tomorrow.  Mostly, forget about the things you can’t change.

I’m still working on that one.

 

 

The (not so) Perfect Comeback

Don’t you hate when you can’t think of a comeback to some jerk until long after a confrontation?

Most people who know me would probably imagine that I don’t have any trouble snapping back at someone who snaps at me.  They would be right.  Most of the time, I don’t.  I have my share of flaws, but I’m usually pretty quick-witted.  I can give a snappy answer when it’s called for–and sometimes when it’s not!

But I’ve had my weak moments.

I don’t know why I started thinking about this story all of a sudden, but it’s been on my mind all day.  I guess I’ve just been admiring all the things my daughter can do now, and how far she’s come, and it made me remember a man who told me none of it would ever happen.

Our medical journey with my daughter has been a long one.  I won’t go in to all of that.  The abridged version is that we made several trips to the Mayo Clinic in Minnesota, and during the last one, we had our first appointment with a developmental pediatrician.  We had never seen one of those before.  I asked the neurologist out there why we had to see him, and she said, “Well, he specializes in development, so maybe he can give you some idea of Evelyn’s level of development and what you might be able to expect in the future.”  I should have been immediately skeptical, but let me give you some insight into my mental and emotional state at that point in time.

I was a wreck.

That was our fifth trip to Minnesota.  My daughter couldn’t walk or talk.  She was around three years old, but she had the cognitive ability of a little baby.  I was running out of options to find out what was wrong.  She had been tested for everything.  No answers.  No diagnosis.  Worst of all, no hope.  I didn’t realize it then, but I guess some tiny part of me was thinking that if someone could name what was wrong with her, maybe there was something that could be done to fix her.  All of that was coming to an end.  In addition to the Mayo trips, I had also spent a total of 31 days in Bethesda, Maryland, at a special therapy center that worked with non-verbal kids to try to train their brains to learn speech.  It was a wonderful thing for lots of people, but, naturally, it didn’t work out for Evelyn.  In short, there really wasn’t anything left for us to do.

So we went to the appointment with the developmental pediatrician.  I’m not going to name him, because in a minute I’m going to call him an asshole, and I don’t want anyone who might know him to find out he’s an asshole–you know, in case they didn’t already know.

I have no idea what the man’s face looked like.  I couldn’t pick him out of a lineup.  I don’t think he ever looked me in the eye.  But I will never forget that room, or his stupid gray suit or his stupid maroon tie, or the stupid red leather couch in the office. He went through her chart and asked me a bunch of questions that had been answered eight million times already.  He asked me about the therapy in Bethesda.  Then he did some standard developmental pediatrician tests on my daughter.

He showed her shapes and colors and tried to get her to match them.  She couldn’t.  He gave her a pencil and asked her to write.  She couldn’t.  He watched her crawl, but not walk.  The best test, though, was when he showed her a block and then put it behind a little plastic wall on a table.  The idea was that she would reach around the little wall for the block–this is the concept of object permanence.  Evelyn tried to move the wall to get the block.  He had his hand on it, and wouldn’t move it.  Evelyn looked at me with that little look she has, like she was saying, “Can you believe this asshole?”

No, seriously, she just grinned at me then quit trying for the block.  She didn’t really give a crap about that block, so she stopped trying to get it.  He made another note on his little clipboard and went back to his desk.  He wrote for a few minutes, then gave me his expert opinion.

To paraphrase, he informed me first and foremost that therapies like the one in Bethesda were a waste of money and basically a scam for gullible people.  He also told me that Evelyn was profoundly retarded, and that she probably always would be.  She also would surely never walk.  My one and only contribution to this monologue was to squeak out, “But she’s pulling up to things now,” to which he replied, “Well, she may walk with assistance, but never on her own.”

And that was it.

Now, there are lots of things I should have said.  I should have told him to take a long walk off a short dock; to stick it where the sun doesn’t shine; to screw himself; to take a flying….well, nevermind.  I also should have told him that I didn’t realize developmental pediatricians could predict the future with such startling accuracy.  How could he sit there after fifteen minutes and tell me all of these things about my little girl?  There were lots of things she couldn’t do, but she had come so far, and there were tons of thing she could do.  Against all odds, she had learned to roll over, then sit up, then crawl, and she was pulling up to things.  Yes, it took her much longer than it took most kids, but that didn’t mean she would never do it!  Then I should have stood up, picked up my baby, tossed my head, and marched from the office.

I didn’t.

I didn’t march from that office.  I slouched out.  I skulked, like a beaten dog.  I felt like that.  He had just given voice to all of the worst fears in the deepest, darkest part of my heart.  He had crushed me–crushed the heart and soul right out of me.  I trailed all the way back to the hotel room, got Evelyn a snack, and sat on the bed.  It was a low place.  I was alone–Evelyn and I had flown out by ourselves, and she was already asleep.  I couldn’t tell you if it was raining, snowing, thunder, a tornado, anything.  I wanted to cry, but I couldn’t even do that.

I pulled myself together after a while, and talked to The Grandmother and Matt on the phone.  I told them the gist of what the DP had said, and we took turns abusing him verbally.  It didn’t really help, but it was nice to call him a bunch of dirty names.

I’ve heard the word “vulnerable,” but in all honesty, it’s not really a word that applies to me very often.  Looking back, I can see that it was appropriate then.  He was literally kicking me while I was down.  Once we got home, life went on, and I was able to start moving past all of the things he said.  Oddly enough, it was Evelyn’s regular neurologist that made me feel better.  Lots of people aren’t crazy about him, because he has a tendency to be very frank, but that’s the very reason I like him.  I admitted to him what the DP had said.  He snorted.  Literally.  He said, “How does he know what Evelyn will be doing in a year from now?  I regret you had to see him–developmental pediatricians are like tits on a boar.”

I swear, he really said that.  It made my day.  As time went on, I wished more than ever that I had told him off, and I even wrote a very strongly worded letter.  I never mailed it.  In a way, I didn’t want to admit to him how badly he’d hurt me.  But I think he did me a favor.  He gave a face to the enemy.  He gave us something to fight against, and, more importantly, something to fight for.

So, Dr. Barberisi? You can kiss my ass.  Oh, and Evelyn can walk now, so it should be pretty easy for you to kiss hers, too.

 

Mother Lion

Bullying sucks.

Sooner or later, just about every child has to face a bully.  It’s a sad fact of life, and as a parent, it’s a tough situation.  You want to jump in and defend your child, but you also want them to grow and be able to deal with bad people on their own, because you won’t always be there.

But what if…….

What if your child can’t take up for herself, and probably will never be able to?  Imagine your child can’t talk, has poor balance, doesn’t understand things very well, and is just generally pretty weak.  Then imagine someone hurting her.  On purpose.  Then imagine how you would feel about that person, his parent, and the people who were supposed to be monitoring the situation.

Right.

But then imagine something else.  Imagine that the bully in question is a lot like your daughter.  He doesn’t understand things very well.  Oh, and he’s in a wheelchair.

That’s how my day went yesterday.

There’s a boy in my daughter’s class who is a repeat offender.  Nearly everyone who has contact with him has suffered scratches (at least) at some point or another.  This is the second time he’s got my daughter–this time right down her left eye and cheek, and when she put her head down in response to the attack, he got her again on the back of the neck.  She cried–the girl who seldom cries.  She was scared, upset, hurt, and confused.

Know what happens when you bother a mother lion’s cubs?  Yeah, she kills you.  Then she feeds you to the cubs.  Then she lays and watches while the jackels and vultures clean up the scraps.  I was there yesterday.  It was as mad as I have been in a while, maybe ever.

I don’t know why it hit me so hard yesterday.  Maybe it was a combination of the weather (gloomy), the time of year (gloomier) and my general bitchiness.  All I know is something broke loose yesterday.  The camel’s back broke–use whatever cliche seems most appriopriate.  Ever since Evelyn started school, I’ve dealt with fear on a daily basis.  It’s been the source of a lot of teasing and little jabs from the people who know me–jokes about Mother Hen and all of that.  But here’s a secret–I don’t trust anyone with my daughter.  I don’t trust my own family, and even to a smaller degree my own husband!  And yet for some reason it’s supposed to be okay for me to ship my daughter off to be kept by strangers for half of the year.  It doesn’t necessarily have anything to do anyone’s ability to take care of her (although I secretly believe no one can care for her like me), it’s more my own fears.  True, but from my perspective, irrelevant.

Then something like this happens and I spend the evening saying things like, “See! This is why I don’t trust people to take care of her!”

But for all of that, a much larger issue spread through my mind like poison all evening (and night, I’m sorry to say).  What do you do when the bully can’t really be punished?  Suspension is pointless.  Behavior modification is a joke.  Then there’s the real problem:  his mother is worthless.

Now, that’s a harsh statement, but those who know me know I don’t care.  I’ve met her.  Remember my post, Trained Idiot?  I mentioned some people I observed that day, but I left one out.  It was her.  Ironic, isn’t it?  Although she would fit pretty well in the martyr category, that’s not completely accurate.  I didn’t mention her, because something went beyond mere annoyance–I didn’t like her.  Her attitude, her comments, everything about her, from her long curly blonde hair to her pointy-toed high-heeled boots, pissed me off.  I couldn’t pinpoint it at the time, but my instincts just said, “Get away from this woman.”

Now that all of this has come to pass, I see my instincts were pretty good, as usual.  Her son has attacked numerous people, and she is on the receiving end more than anyone.  You know what her philosophy is?  He’s punished every day of his life because he’s in that wheelchair, so it’s not fair to punish him for his bad behavior.

I’ve encountered this special-needs parenting philosophy before.  It’s a lot more common than you might think.  I personally think lots of people are guilty of this, not just with special-needs kids, but with any kid who has had a rough time in some way.  You feel guilty for giving them a consequence, because you think, “Haven’t they suffered enough?”  It’s easy to see how a person could feel that way.  Hell, it’s hard not to.

But here’s what I’d like to say to Goldilocks and all those who subscribe to that particular bit of sentimental parenting: You are crippling that child in a way that the wheelchair never could.  You are making him a social outcast, and you are guaranteeing yourself and him a miserable life.  Special needs kids need structure and discipline just as much as any kid, and truthfully, more so.  I know it’s hard–believe me, I do.  It’s taken me almost two years to get Evelyn to stop hitting when she’s mad.  A thousand times she had to hit and I had to correct her.  It sucked.  But guess what?  I’m a parent–specifically her parent, and that’s my job.  That’s what I agreed to when I got pregnant.  Here’s the thing about ingnoring bad behavior–it isn’t just your kid’s problem.  The minute he puts his hands on someone else, your crappy parenting is effecting others.  The rest of us don’t have to tolerate it because you’re ruining your son with pity instead of raising him with love.  I have pity for your son, but not because of his condition.  I have pity on him because of the life he’s missing out on because of you.

I had a really tough time yesterday keeping myself in check.  I have this Jeckell/Hyde thing sometimes when it comes to my temper, only I like to think of that “other side” as Redneck Mommy.  She has a bad attitude, a foul mouth, and big, man-like arms from all of the heavy lifting.  She longed to kick somebody’s ass yesterday.  Let me tell you, even though I knew what had happened, when my daughter came down that hall yesterday and I got my first look at her, it was a struggle.  I’ve always heard the saying “I saw red,” but until yesterday, I’m not sure I actually realized that this is literally what happens.  If the bully’s mom had been there…..well, I don’t know what would have happened, but it couldn’t have been anything good.  But I kept it together (well, mostly) and left with my dignity in tact.  I went through the proper channels to get the situation handled and to make sure it never happens again.  I’m actually kind of proud of myself.

But if it does happen again?  Well, let’s put it this way–Goldilocks, Redneck Mommy is kickin’ your ass.

 

(not so) Normal

I slipped out of the house undetected (after a complete report on where I was going and when I’d be back) a couple of days ago to have lunch with my husband.  Before I came home, I called to see if anyone wanted anything while I was out.  No.  Then I asked if everyone was ok.  Here’s the conversation:

The Grandmother: “Everything’s normal.”

Me:  “Normal?”

The Grandmother: “Well, everything is like it usually is, anyway.”

Me: “Right.”

 Now, I have this thing where, no matter what anyone says, I can usually apply some sort of movie quote or song lyric to it.  I wrote about it here.  So I started thinking about what it really means to be “normal.”  First of all, my brain spewed out a quote from the movie “Tombstone.” At the very end, Doc Holiday is dying, and he asks Wyatt Earp what he wants, and Wyatt says, “Just a normal life,” to which Doc responds, “There is no normal life, Wyatt, there’s just life.”  Then, naturally, my mind jumped to Spongebob, and the episode where Spongebob becomes “normal.”

 

If you haven’t seen the episode, obviously you have more of a life than I do, but the gist is, normal turns out to be kind of boring, and just generally not as much fun as abnormal.  Who decides what normal is, anyway?

My life definitely does not qualify as normal–at least, not to the public in general.  With a sister and daughter with severe and yet very different types of disability, my days are probably not a lot like yours.  And yet, they might not be as different as you think.  I still have to get everyone up, get them fed, get them headed in their various directions for the day, meals are planned, bodies are washed, teeth are brushed, books read, work done, house cleaned……you get the picture.  The same things have to be done, they are just done a little differently.

My life is normal, to me at least.  I think maybe normal is a very subjective word, like most things, if you stop and think about it.  We all just sort of do what we do, you know?

I am always amused when someone says, “I have no idea how you do what you do.  I couldn’t.”  I always bite my tongue and I never say what crosses my mind (note to doubters: believe it or not, despite rumors to the contrary, I do NOT say everything that pops into my mind) which is simply “Sure you could, if that’s what you had to do.”

For what it’s worth, all of you who think I do so much more than anyone else, let me give you some examples of the lives of people I know, and guess what?  I wouldn’t trade places with them for anything.

  • My dear friend is a stay-at-home mom like me, and she has a son who just turned two.  He demands her attention all of the time. I mean this in a very literal sense.  He won’t sleep without her, eat without her, nothing.  Ever. Can I make this any clearer?  On top of that, her middle child feels compelled to compete for her attention.  I am about ten years past my baby-tending prime, and I swear, I have no idea why she isn’t in a mental ward somewhere.  She is either the most patient person on earth, or she has some really good drugs.  Maybe a little both.
  • Another of my friends is a teacher plus has two kids at home plus has a daughter in college plus has temporary custody of a boy whose mother passed away not to long ago plus she’s in the middle of getting a divorce from the world’s neediest man.  Holy hell–need I say more?
  • My own mother is with her husband all of the time.  I am not making this up.  They work in the same place and they have the same schedules.  They take the same vacations.  They are together all of the time.  Did I mention they are never apart?  I have the type of personality that completely supports the theory that you can’t really appreciate someone until you spend some time apart from them.
  • I know another woman who isn’t a close friend, although I do see her pretty regularly.  She is one of those, whaddayacallem, obedient wives, and she asks her husband’s permission before she makes decisions about the kids, the money, the house, whatever.  Um, I didn’t get married because I needed support for my poor decision-making abilities.  That fellow and me would last in a marriage less than twenty-four hours, I promise.  I’m not bragging–he’d despise me probably more than I would despise him.

So you see, normal really doesn’t exist, at least outside of our own walls.  Everyone has their own thing going on, and it always appears kind of weird to people on the outside looking in.  Before you look at my life and think, “I couldn’t do that!” remember: you might be surprised what you could do.  I guess we all just do whatever we have to.  Except the obeying the husband thing.  I’m pretty sure that  is way out of my reach.

 

Trained Idiot

If any of you out there in readerland have a close friend or family member with special needs, then maybe you are familiar with the avalanche of paperwork that comes with being involved with any sort of government program.

If you have your child (or sister, as the case may be) enrolled in any of these programs, such as the I/DD Waiver program, then paperwork becomes downright frightening.  Apparently some government official somewhere decided that six thousand pounds of paperwork a month wasn’t enough, so now they have decided that anyone who works with the special needs “consumer” (that’s their new term for the disabled individual) has to have lots of specialized training.  Since I am one of my sister’s “providers,” I am required to have this training.  I technically don’t have to do the training, but then we won’t qualify for the services provided by Waiver, and that would be a major bummer.  There are TONS of qualifications that have to be met, and this whole day of training is one of them.

The purpose of this all day training session is to educate people like myself on how to care for people like my sister.  That’s just in case I haven’t figured it out in the past twenty years or so.  The largest part of the training is called “Crisis Intervention.”  What that means is the government has too much time, too much money, and not enough sense.  No, sorry, what that means is when a special needs person has a “crisis,” we are trained how to handle it.  Now, a crisis is different for each person–some people scream, some people hurt others, and some people hurt themselves.  The point is, there are certain ways they think you should handle the situation.

I’m not going to get into what the actual training consisted of.  By far the most fascinating (and infuriating!) part of the training was studying the people who were there, myself included.  For example, I realized there is a good chance that I have that adult attention thing.  I literally cannot sit still for more than twenty seconds or so.  Also, one of the fluorescent lights kept blinking, and it nearly drove me batshit!  I doodled on the papers, squirmed, shifted, and glared at the blinking light for approximately seven hours.  Good times.

I guess the only thing that kept me from either dropping dead of a heart attack or jumping up and running screaming from the room was being able to watch the others trapped in paradise with me.  I was, as I always am, fascinated by the different personality types represented in the room.  Here were my favorites:

The Stupid Question People:  You know who they are, and you know what they do.  In any group of people, there are at least of couple of these wonderful folks.  Example:  the instructor said, “Right now we are going to talk about how to get out of a one-handed grab. We will talk about two-handed grabs in just a minute.” One of the SQP’s responded immediately by saying, and I quote, “What if they grab you with two hands?”

The Smug Guy:  Oh yes, he was there.  The guy who knew it all and knew it best.  Not only that, but he was incredibly convinced of his own wit.  One of the first things we talked about was identifying changes or escalation in behavior, and he said, “Let’s just take a step back here.  How exactly are you all defining ‘behavior’?”  He even did the air quotes thing.  He knew exactly what she meant–we all did.  We all have special needs people in our lives.  He just had to be cute.  He had some narcissistic need to show everyone how smart he was.  I can observe most of these people with disdainful detachment, but I’ll be honest, this guy got to me.  I think some of my neighbors were equally disgruntled.  I was afraid it would escalate to the point where all of us, driven by irritation and lack of food, would rush upon the Smug Guy en masse and whack him repeatedly over the head with our Crisis Intervention handouts.  Given the heft of these papers, he would have, at the very least, been put into a coma.

The Late People: Isn’t it wonderful to be somewhere on time, and then have to sit and wait for people who apparently can’t tell time?  We were supposed to start at 8:30 sharp, and we were pre-registered, so the instructors knew there were some people missing, and they kept saying things like, “Just a few more minutes,” and “We’ll just give them another minute or two to get here.” Finally the stragglers wandered in, but two people go there at 9:00, after the class had started.  Not only that, but the exact same people could not grasp the concept of a fifteen minute break.  The could not make it back on time, even though we never even left the building for the breaks!

The Random Thoughts Guy: Guess who was sitting beside this guy?  I’ll give you a hint: it was me.  He would sit quietly for a while, then just make some random statement.  From time to time he would morph into a Stupid Question Person, but really he was in a league of his own.  At one point, after watching a video about infection prevention, he said (I swear) “Did you hear about that athlete that had AIDS? And then they took all his blood out and cleaned it or something? And then he didn’t have AIDS anymore? I don’t know, they must have did it in some other country or something.  Seems like a shame they can’t do that in this country, you know?”  It was a long, long day.

The Martyr:  Oh boy.  Boy oh boy.  This was a young woman who has a son with autism.  I couldn’t say for sure what issues he has, because no matter what anyone said, this woman had to pipe up and tell about her son did or had the same thing.  And she couldn’t stop talking during the whole session.  Once, a comment was made about how the weather affects some people in a negative way, and she said, “Oh, the weather definitely has an effect on my son.”  When someone mentioned hitting, she said, “Oh, my son is definitely a hitter.”  Then she would nod her head sagely after each comment.  I could go on and on and on and on and on and on and on and on and on…….but you get the picture.  My first instinct was to be annoyed with this woman, like maybe she was looking for pity.  Hell, I don’t know, maybe she was.  All I could think was that she just wanted to be a part of the conversation, of the group even, if you can dig it.  Sometimes, having a special needs child can seem very isolating, and here was a whole room full of people who knew exactly what it was like to go through the daily struggles that we go through.  I get it.  She was a nice woman, you know, other than the fact I wanted to stick my ink pen up her nose.

In short, it really wasn’t the way I would have chosen to spend my day, but what can you do?  I did actually learn a few things, I guess, and I met some nice people.  A few of us are going to get together soon, and when you read an article in the paper about a man found dead under a mountain of paperwork, I have no idea what happened.

 

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