Out of the mouths of babes ...

Most parents of autistic kids have a story to tell about how their child(ren) have said a swear word or two or ten -- sometimes daily.  I have been incredibly lucky about that because neither of my boyz have ever done that.

Joe goes out of his way to NOT say words that he thinks are bad or inappropriate.  I have him read to me daily (and have for years) and for a while whenever the word "God" would appear (not as a noun) he would change it to "gosh" and he would change "damn" to "darn" and he would do it without pausing or stumbling so for the longest time I didn't think any of the books he had chosen had any cuss words.  This worked fine in most stories but then he was reading the Percy Jackson series and the kids are at Hoover Dam and they start talking about the "dam snack bar" and how they want a "dam burrito" and he figured out that it was only funny if he actually said the word dam/damn.

For a 19 year old, he is so surprisingly innocent about some things.  When he was reading and came across the word "bitch" he would say it without pausing because to him that was a female dog and nothing else.  I remember having to teach him what it meant when someone flipped you off.  So he is certainly not going to let loose with the F-bomb in the middle of a store.  Thank you, Lord!

With Alan, he probably would use curse words if he heard them.  He parrots the most surprising things.  But even before we knew about their diagnoses, DH and I have worked very hard to not say curse words in front of the boyz.  Since DH works in an industrial environment, his "work language" is very different from his home language.  And while I might have cussed way more than was appropriate in college, I don't really use that kind of language anymore so the boyz just don't hear a lot of curse words.

I remember a co-worker of mine that had a baby about the same time as I had Joe.  We got together once when the boys were about 2 and he was (very proudly) telling a story about how his toddler had said "F&%$" after slamming his finger in the toy box.  He proceeded to tell me that his wife "who was a linguistics expert" thought this was great because he was using the word appropriately.  I'm sorry, but I don't think it is EVER appropriate for a toddler to say that word -- even if he HAD just slammed his finger in the toy box.

But back to Alan.  He is considered mostly non-verbal but always gabbles up a blue streak.  When he is eating, when he is climbing, even when he is watching videos and certainly when he is in the bathtub there is a steady stream of sound coming out of his mouth.  Most of it is just vocalizations or stims, but every once in a while a word or two is clear.

When he was a toddler he started saying the word "tugboat" in what was very clearly an "I'm angry" occasion and we joked that we would start swearing tug-BOAT (because the emphasis was always on the second syllable) whenever we were angry.  At his one school he had different "names" he would call each of his teachers when he was upset.  One was usually the tugboat, one got "I'm mad at you" which sounded a lot more like "you a Jew" and the other one got a stream of syllables that sounded just like "you high, you high, you a ho" which provided a lot of fodder for teasing among the gals (who luckily were all very understanding folks!!)

Then came "tattoo".  I have never figured out what it was supposed to be, but all of a sudden he started saying the word tattoo.  The teachers (and when it happened a second time recently, the bus drivers) asked me if someone if the family got a tattoo.  Um, no, I have no idea what he is saying or why.

So last night after bath, the dreaded f-bomb seemed to come out of his mouth in the midst of the gibberish.  All I could think was please don't let this be like "tattoo" or "tugboat" which we heard often and clearly.  Not only do I not want to explain where it came from to all the relatives and strangers that he will probably offend, but it will most likely send Joe into cardiac arrest.

Teaching finances to a HFA

Trying to teach Joe finances continues to be a challenge. Since he drives (and therefore has to put gas in his car) we set him up to have a debit card. I was NOT going to let any child loose with my credit card!

To give credit where it is due, Joe is fantastic about balancing his checkbook. He always records his gas purchases or bank withdrawals perfectly and the only time his checkbook didn't balance it was because he typed the numbers in the calculator wrong.

For car repairs, we usually split the cost. He does work a weekend or two a month and has some income so I don't think having him pay for oil changes or half the price of a new battery is outrageous for the free use of a car!

However, in a continuing effort to help him understand cash flow (as well as financial transactions) I frequently send him out to the store for little things.

We are getting low on Alan's lactose-free milk.
Mom: "Joe, can you run up to the grocery store and pick up some of Alan's milk?"
Joe: "Sure. That is what I'm here for." (I kid you not, that is what he says!)

Joe forgets to tell me we ran out of his favorite mouthwash.
Mom: "You can stop and pick up a few bottles after work tomorrow." (Work = his volunteer positions)
And it is done.

He is remarkably helpful that way.  Most of the time he pays in cash and I reimburse him. Sometimes this means I have to make a special trip to the bank to make sure I have enough cash on hand but DH and I figure that as more money travels through Joe's hands he will get a better understanding of how finances work.


This isn't always the most frugal option for us however. One time he bought a name brand where I would buy the generic and his answer was "but I could afford it!" Sigh. He didn't understand that even though he was giving the cashier money, ultimately we were paying for it.

Sometimes it is a pricier errand and he puts it on his debit card. He gives me the receipt and I transfer the money from our account to his. He really doesn't understand how or why this works but I feel better because I don't feel like I am trying to cheat him out of the money he has earned or been given.

Yesterday he went out to pick up a few things and the total came to about $25 so he decided to use his debit card. Fine. Then he figured that since he was low on money, he would get $40 cash back. I was trying to make him understand that either he needed to subtract $40 from his account and I would transfer $25 or he could subtract $65 and I would give him $25 in cash. Yikes. That got confusing even to me!

Then I had what I thought was a brilliant idea. I would explain fiances to him in terms of colored Legos. I told him my account was the red Legos and his was the blue. He gave 5 blue Legos to the store and I gave him 5 red Legos to pay him back and he was still even because the color of the money (Legos) didn't matter.

That actually seemed to make sense to him. But I couldn't figure out how to explain the $40 cash back. Sigh. Really it was easier teaching him the rules of the road for driving using Matchbox cars.

Separating Autism from Autistics

Many people believe that you cannot separate autism from autistic people.  They say it no different than gender or race.  Last time I checked, it was still possible to get a sex change operation and Michael Jackson sure tried to change his race.

To me autism and autistic people are very different things.  To me autism is no different than any other neurological disorder.  In many ways, I think autism is a lot like bipolar.  There are some real perks to bipolar for some.  A lot can be accomplished in a manic episode.  But there are some serious minuses as well.  People with bipolar are at a greater risk of suicide.

So I decided to go to the autism expert in my house and I had the following conversation with Joe last week.

Mom: "So, Joe, if someone would come up to you and say 'I really hate autism.' would you think this meant they hated you or some of the things that autism makes you do?"

Joe (AKA Mr. Literal):  "If they said they hated autism, I would think they didn't like some of the things about autism.  Like my friend, Harris -- sometimes he can really annoy me but I still like being friends with him.  And Alan is OK as a brother but it sure would be nice if he could talk like me."

That made a lot of sense to me.

I read a blog awhile back where the mother said that her child was autism and autism was her child.  All I could think was how sad and limiting that is. 

I think my boyz are so much more than their autism.  While some of their personality traits have probably developed in response to having grown up with autism, some are just there.  Alan can't begin to tell a joke, but he has the funniest sense of humor.  Joe genuinely wants to be helpful.  Alan cleans up all the time and has since he was a toddler.  Joe is wise beyond his years but so unbelievably naive.  They are some weird little conundrums!!

When someone says you cannot separate autism from autistics, I want to say that is like saying you cannot separate red from the rainbow.  You can.  Maybe it makes the rainbow less pretty, but then again, if you have too much red it can overwhelm the other colors and make them much harder to see. 

I just want a little better balance in my rainbows.

Joe-isms

Joe comes out with the funniest observations on life.  Mostly I've just shared them on my Facebook page and with family, but I decided to collect as many as I could remember and put them in a blog.

I was dressed all in purple one day and Joe told me that I "looked like a plum."  Since he likes plums, I think it was a compliment, but it is always fun to try to translate the autistic mind.

He told me earlier this year that he hoped if he had kids that they were more like him and not like Alan because "Alan is just work, work, work, work!"

Joe took one look at this house (across the street from Alan's camp) and said, "That is really unsafe.  Alan could NOT live there."  (In case you can't tell from the picture, there is a second floor door that opens to a porch roof and there are no handrails.)

Once Joe's homeroom teacher had been out sick for several days.  When she saw Joe on her first morning back she said, "I really missed you, Joe!"  His response?  "Well I managed to do just fine without you."  Luckily, she laughed and he amended it, "Well, I mean, it is good to have you back, too."

One night when we had Chinese for dinner and my fortune was something like "Your house will always have peace."  Needless to say, this gave DH and I quite a chuckle.  When we stopped laughing, Joe says, "That will never happen!" in a very matter of fact voice.  Another night there was no fortune in my fortune cookie and Joe decided that meant I was "unfortunate".

A few weeks ago, when I mentioned to Joe that I had a stomachache, he asked me if I thought "I might be getting pregnant."  (At that moment?!?!)

When I had a minor fender bender less than a year after totaling my previous car, Joe wanted to know if the new car survived.  (No query on me, I guess he figured I was walking and talking so I must be fine.)  When I told him that yes the car would be fine, it just needed a little repair, his response was, "Good.  Because I thought you were going through cars awfully fast."

Most parents try to prepare their child for the world.  I think I might have to prepare the world for my child!

Helicopter Parenting

We've all seen them and read about them -- the dreaded "helicopter parents" who cannot help but hover around their children.  They intervene in the smallest crisis and try to direct everything from their child's teachers, to their child's friends, to their child's activities. 

As a parent of a special needs child, I feel guilty of this even when I loathe this type of behavior.  I know I jump in too often when I am with Joe and someone is talking to him in a way that I know is too laden with generalities or idioms.  I tell myself I am merely being a translator and yet isn't the best way to learn a foreign language to go to a place where that is the only language spoken and be forced to communicate? Nonetheless, it is almost impossible for me to sit by when someone asks him a question that I know he just doesn't get and I feel like a simple rewording will make it all go smoother.

Jumping in to translate when it is family, a store clerk or even a doctor is one thing but one issue that I am forever stressing about is Joe's driving.  What happens if he has an accident or gets pulled over by a police officer and they don't communicate in a way that Joe understands?

Joe drives himself to and from school every day.  The first time he drove away from the house (to go to the grocery store) I sat next to the phone until he returned.  I still have not been able to jump into the shower or put myself completely out of reach of a phone when I know he will be driving.  Is that helicopter parenting or just being careful?

Joe is a good driver.  I know he will never text and drive -- heck, he won't even answer his cell phone when it rings in the car -- because that is the rule.  He doesn't take a drink from his soda unless he is at a stop light.  He doesn't speed.  In fact, if he has a failing while driving it is that he is too cautious.  It is a bit like riding in the car with a little old lady instead of a teenaged boy!

At the same time, he is a new driver.  This morning was the first time he drove alone under really snowy circumstances.  He has driven on snow with me in the car but as anyone who has driven in snow can attest, things can happen fast.  Joe's biggest failing is that he likes to plan.  You cannot always plan what will happen when you drive.  If you could there wouldn't be accidents!

So this morning I asked him to text me when he got to school to let me know he got there safely.  This is the first time that I have asked this of him. 

His response?  "I will if I remember."  Painful honesty from an autistic teenager!

Of course, this is actually completely typical as I have been reminded repeatedly by my mother that I did something similar to her.  When I was 17, I had a part time job at a local discount store and naturally had a shift when it was snowing.  My mother asked me to please call her when I got to work.  "Oh sure, Mom, no problem!"

Naturally, being a teenager, I got there fine (we are invincible when we are teenagers or so we believe) and forgot all about reassuring my mother.  So she called and talked to one of my co-workers and then chewed me out when I got home.

DH and I were exchanging e-mails this morning while Joe was driving and we were wondering if I had made the right call.  Helicopter parenting?  Perhaps.  Although a true helicopter would have insisted on riding in the car while her child drove or perhaps followed him.

After 35 minutes (when it normally takes me 15-20 minutes to drive to school), I finally got a text.  "I made it with some slipping." 

So this turned out to be a good learning experience for both of us.  I didn't hover and he had the opportunity to drive in slightly tricky circumstances without assistance from mom or dad.  Sometimes that balance is as tricky as a slippery road for a new driver ....

Raining Idioms and Literal Thinkers

Most people know that people with autism tend to be very literal.  Explaining idioms to kids on the spectrum can be fun, frustrating and frequent.  Even when you think they have most of them, it crops up at the funniest times. 

We got together to watch a football game this weekend and my brother-in-law made some comment about "hoping they could eat a little more time off the clock" and Joe got the funniest expression on his face and he said, "Eat ... what?!?!?!  Translation, please!"  There are so many idioms in the English language that there are always new ones to learn.  One SLP that Joe had in elementary school had an entire semester devoted to idioms which the kids thought was so much fun and the parents thought was so necessary.  But of course there are always more.

One child that I heard about used to go out to the driveway before they would leave and slap it because the parent would tell him that they needed to "hit the road!"  Joe loves to say "hang on to your hats" when someone makes a turn in a car because one of his carpool drivers used to say that.  Of course, it doesn't take much imagination to understand why "raining cats and dogs" can be funny to a literal thinker.

But trying to explain why his uncle's second wife is still his "aunt" when her children are said uncle's step children gets a little more confusing.  He wants to call her his "step-aunt".  When I try to explain that it sounds offensive he asks me why.  I give up.  Let's just call her by her first name and be done with it.

Joe is a very fluent reader, but his comprehension is far below grade level so we still have him read aloud to us every day.  Right now he is on a Harry Potter kick.  There was a line in the book this morning that said something about "I can see Uranus.  Get it?  I can see your anus." to which Joe says, "I don't get it."  Ah the fun conversations I get to have!

But the best conversation with Joe on literal thinking came while teaching him to drive.  One of the things covered on the permit test was "road rage".  One of the symptoms given was "excessive honking".  So the first time he hears me honk after learning that he wonders if I have road rage.  "No, I am just trying to make sure the driver in front of me is aware the light has changed."  I explain that not every driver that honks has road rage.  Usually it is more when you lean on the horn or honk repeatedly.  Suddenly it occurs to me ... "Joe, do you know what it means to flip someone off or give them the bird?"  "No."  Okay, let's explain this one.  I don't say what it literally means, but I explain that it means they are pretty angry with you.  And while someone might honk at you just to get your attention, if someone flips you off, you can be pretty sure you did something to make them angry.  

How many people get to explain to their high school student what an obscene gesture is???

Intro

I am honestly not sure who will read this, but I am using this blog also as therapy.  

For those who do not know me, I have two sons with different forms of autism.  

Joe is almost 18 and fairly high functioning.  He just got his driver's license and talks incessantly, but there are curious lapses in his comprehension and he is literal to the nth degree!  He is a senior in high school and he is mainstreamed for a couple of classes and in a special ed class for the remainder.  He is the darling of the special ed programs because he is so high functioning, but he is just a little shy of being able to even make real friends.  He sees almost no need for calling, texting, e-mailing or even getting together with people outside of school.

Alan is 14 and a much bigger challenge.  He is sweet and affectionate at times, violent at others and completely self absorbed at others.  He loves to climb.  He has a smattering of words (mostly nouns), some echolalia and a lot of vocalizations!!

My husband and I are both engineers by degree but I have been a stay-at-home mom since Joe was born.  At times I have really wanted to go back to work, but someone has to be available after school and since my husband's job is much more demanding, that someone has been me.

I have several hobbies and they have been my sanity saver of late.  I also like to read, but have done very little of that lately.  I will however mention it when I read a great book or see a good movie.

The reason for the title of the blog is that at a recent family gathering we were discussing trees and I mentioned that we had a Bradford Pear tree that didn't bloom for about 10 years.  At one point and time, my hubby and I used to like to joke that we had the special needs kids, the special needs cat and the special needs tree.

(Note:  The original title of the blog was "Specializing in Special Needs" but I changed it to "Life with the Spectrum")