TBT - Driving Julie Crazy

Happy Throwback Thursday - Blog Style!  Since I am once more in the middle of driving Alan to camp every day, it seemed appropriate to re-run this post from last year.  Although I no longer have a "new" car, everything else is still appropriate!

Driving Julie Crazy

Someone once gave me a small plaque that said "Whoever said you only go around once in life, never had carpool duty."
 

The funny thing is, I didn't really mind carpool duty most of the time.  When Joe was in grade school we found another family with whom we meshed perfectly.  I didn't mind driving in the morning, but really did not like waiting in the after school carpool line.  The other mom didn't like getting up in the morning but didn't mind the after school drive.  It was a good fit.  We continued to carpool through two kids each and two schools and it always worked out well.

Unfortunately not all carpooling is so pleasant.  And when you throw special needs into the equation, things can get VERY interesting!

I had the kid that wanted to listen to his choice of music in the morning.  Sorry, kid, you want a happy driver and I get very edgy when I don't have my tunes.

I had the time that Alan was going to school a half hour away from home (and then I had to drop Joe off) before I could go home.  Naturally, as soon as I pulled into the school parking lot, Alan sprayed his breakfast all over the back seat.  Yuck!!

I had the little girl who would only listen to certain songs (and I had a limited number of them on my CDs).  I got to hear Lady Gaga's Just Dance song four times one morning because that was how long it took to get to school.  Thank goodness that was a close school!

I had the child wearing so much scented body lotion, I felt like I was attempting to walk through the department store perfume department.  Have I mentioned that I'm very olfactory sensitive??
  
I had the time that a police officer pulled me over and I was so happy that I had FOUR children with varying degrees of autism that were all sitting quietly and correctly wearing their seat belts that in never occurred to me that I might get a ticket.  He did give me one for "improper lane usage" (I got in the turn lane a little before it technically started) and it was all I could do not to ask him who pissed in his Cheerios that morning.

I had the child that used to insult Alan (although never when I was driving).  

I had the kid that unbuckled himself and leaned over the back of my seat to try to turn off my radio because he was going through a "silence" phase.

I had the time Alan's OCD required him to jump in and out of the open car door at least five times before he would get in or out to stay.  Naturally the other ASD boy we were driving decided he would do the same thing.

Then there was the time Alan sat ON another kid.  Luckily he had a sister who was at a similar functioning level and he just calmly said, "Alan, you need to get up."  He repeated himself several times but didn't get angry or upset.

Of course when Alan tried that with another boy, he shoved Alan out the door.

Nowadays I do a lot less driving of Joe so it is just Alan.  Camp started this week so I have been dealing with the afternoon parking lot crazies.  It is probably worse for me this year because I have a new car.  I am so worried I will end up like this!

Between buses that do not slow down when going through VERY narrow openings to the nutty parents and the pokey kids, it is enough to make me wonder if a medicine increase for the summer is in order.  That would be mine, not Alan's.

The next step

Joe graduated from high school over a year ago.  I never thought it would be this hard to get him a job!  Although I know he interviews poorly (when asked if he would like doing something he usually answers truthfully "well I guess it would be okay if you paid me enough") he is a hard worker and really wants to be useful.

So after our college option disappeared for this fall, my interest in getting him busier peaked.  We reapplied to Vocational Rehab (which we had abandoned last fall because of a personality conflict with his employment specialist) and while we were waiting for the speedy government, his job coach at the coffee shop (Kim) heard about a local hospital who wanted to hire special needs folks.  He had an interview last week with a few folks from the hospital and several people from Kim's company.  He reluctantly let us dress him up in a suit.

Turns out he was the star of the interviews.  One other boy dressed up but Kim said it looked like his polo had been over with her truck and one girl had "hygiene issues".  Well that is one way to get Joe to stand out in a favorable way! He has his second interview with the hospital tomorrow.

Practicing dish washing ("Mom, not THAT kind of dish washing!")

Then yesterday Kim told me about a dishwasher position at a local restaurant.  This morning Joe told me that this week was very stressful and he was looking forward to no more interviews for awhile!

But he did go over to the restaurant with Kim today.  Although this isn't even Kim's job, she is trying so hard to get Joe a real job and I am truly touched.  Joe came home positively bubbly (for him) and told me that the restaurant wanted to hire him.  "And they even are going to pay me!"

He is still going to the hospital interview tomorrow but he told me he was pretty sure he wanted the dishwasher job.  Of course, I am torn.  Part of me says "go for the hospital" there is more long term benefits to working there.  The other part of me says "go for the restaurant" and work there until next fall and then reapply to college.  The hospital would probably pay more but it is also a 25 minute drive from home on a busy interstate.  Pros and cons to both.

But whatever route he chooses, my 6' 2" little boy will be working somewhere very soon -- and they are even going to pay him!

Guerrilla warfare or why I appreciate teachers

As a mom to special needs kiddos, I guarantee you that I appreciate teachers more than your average parent -- even more than a parent who happens to teach.  I love my boyz but some days (especially Sundays), I tend to count the hours until Alan returns to school.  It is just emotionally draining at times.  I am unbelievably cut off from family and friends.

Even though I have teenagers, I can't leave them alone in the house for even the half hour it would take to run to the grocery store.  I have been known to put a video on for Luke and run up to the grocery store to pick up milk or prescriptions and I am wracked with guilt the entire time.  What if he climbs somewhere he is not supposed to climb?  What if he falls and hurts himself?  What if he opens a window and climbs out on the roof?  The first two have happened repeatedly and although the last one hasn't happened (yet) it is certainly within the realm of possibility.

Now that Joe is driving, I can at least send him to the store, but there are certain things he is not capable of doing.  He won't use our medical flexible spending card.  He certainly will not look for the best deal when it comes to picking out soup, crackers, eggs, apples, etc.  He won't buy any sort of produce unless it is something he will eat.  Even though I have tried to show him how to pick out assorted veggies and meats, he is not comfortable buying them.  Luckily I have some pretty fantastic neighbors who have been known to share an egg or an onion occasionally.

As always, DH helps immeasurably.   But one of us always has to be on "Alan duty".  24/7/365  So when DH has to work on the weekends (it happens when you work for a utility!), or wants an afternoon off to work out, play a game with friends or even go see a movie by himself, that means I am on duty.  Don't get me wrong, I do NOT begrudge him that time, just like he does not begrudge me the time I spend on miniatures during the school days.  We both need that time "away".  But for the person responsible for Alan, it is "duty".

In many ways dealing with Alan is like guerrilla warfare.  According to Wikipedia, "Guerrilla warfare is a form of irregular warfare in which a small group of combatants such as armed civilians or irregulars use military tactics including ambushes, sabotage, raids, petty warfare, hit-and-run tactics, and mobility to fight a larger and less-mobile traditional military."

That pretty much sums it up.  Alan ambushes, sabotages, fights petty battles and is infinitely more mobile.  DH and I are still larger (albeit not for much longer), less-mobile and traditional.

Most of our "battles" are small.  But they are frustrating.  Sunday morning Alan was whiny.  I didn't know if the lack of structure was starting to get to him or what.  Finally in desperation I gave him an ibuprofen early in the afternoon.  Guess what?  He calmed down and was a doll the rest of the day.  Poor kid.  Something was hurting on him, but he couldn't tell me what.  All I had to go on was a whiny kid.  Very frustrating!

But all these little things only highlight why I appreciate teachers.  Teaching is truly a vocation.  At the start of summer vacation, I am sitting here appreciating his teachers every moment.

Not my day

Have you ever seen those t-shirts that say "Today is not your day.  Tomorrow is not looking good either."  Yep, that is me.

After having read a bunch of different people's blog posts, I am almost thinking that there is something in the air.  I thought springtime was supposed to make people hopeful.  That has never been the case around here.  There are too many allergies and spring is followed by summer (my least favorite season) so I am generally a bit of grump in the spring, but in the past, it always seemed I was in the minority in that.

Today the biggest source of my angst is Joe.  The poor kid has almost no friends.  He keeps inviting one of his former classmates to go places (dinner, movies, etc.) but as last weekend was prom and she went with someone else, I am pretty sure it is a "friends only" relationship.  I am fine with that.  Except he doesn't really have ANY other friends.  And if she actually has a boyfriend, I suspect their platonic dates will continue to decline.  He has two other kids with whom he occasionally exchanges texts but there is no one else with whom he can "hang".

This is breaking his mom's heart.

He is such a neat kid, but he is so socially backward and I just want him to have some friends.  He never saw the need while he was in high school and now he doesn't have anyone.  I was thinking if he got a regular job and was around the same kids day in and day out that this might change, but alas, the kid does not have a regular job.

He frequently goes out after work (to play miniature golf, to eat lunch, to shop) but it always by himself.  I love this independence, but it would be so much better with friends.

Since we found out for sure that he won't be going to college this fall, this has gotten more urgent for me.  I don't think any of us will be happy to live another year like the last.  He doesn't even do much on the computer -- which I will admit is most of my social interaction these days!

So how can I generate social interactions?

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.

Ouch

This week was my second foot surgery.  I had my right foot done in August, then Alan broke his arm and we had so many things planned (including a wedding) that my left foot surgery got put off until this week.

Both DH and I thought this surgery would be easier than the first in so many ways.  Most importantly, it is not my driving foot so I will not have to rely on Joe to drive me around for six weeks.  But also, we've been through it and know what worked and what didn't.  We are also hoping pretty hard that Alan will not break any bones this time around!

In the hospital waiting for Alan's arm to be set

Unfortunately, recovery hasn't been as smooth as we hoped.  I got up last night to go to the bathroom, got lightheaded and passed out.  It was a less than graceful swoon and I ended up lying in the bathtub with my legs hanging out and the backs of my knees resting on the track for the shower sliding door.  I have some wicked bruises on my back, my left thigh and the backs of both knees.  Ouch.

The "Guard Kitty" didn't do anything to notify DH either!

DH had been sleeping on the couch in the living room so that he could hopefully hear both Alan and myself.  Unfortunately it took him a few minutes to figure out who was pounding on the wall for attention and he naturally assumed it was Alan and went up to talk to him first.

All my craft projects will have to wait

As Joe would say, "On the bright side, we didn't have to call 911 and I was only lying there for about 10 minutes." 

But the bruises are a big ouch at the moment -- almost worse than the surgery site!

Thank goodness for boyz ... except today!

I love my boyz beyond belief -- their autism, not so much -- but just the fact that they are male is awesome!  Most days.

 Most people have an idea before they have children of what boyz or girls are "like" and I am no exception.  I clearly remembering wanting no more than one boy.  I had one brother growing up and several of my cousins and friends had similar family arrangements and they worked pretty smoothly, I thought.

I knew I did not want multiple boyz.  My husband only has a brother and my brother-in-law has two brothers and no sisters and a family we were close to growing up had three boyz and one girl and the stories and memories terrified me.

DH loves to tell the story of his brother giving pointers to the neighborhood boy on the best way to beat up DH.  Then there are the stories of the summer that DH finally caught up in size to his older brother.  World War III is usually used as the analogy and all I can think of is my poor, sainted mother-in-law -- but that is another whole blog post!  I remember going over to the house with the three boyz while I was growing up and it totally morphed my brother.  He was sweet and funny most of the time but we'd go over to their house and he would get into fart contests with the other boyz and all that gross "boy" stuff.  No way.  I had decided that was NOT for me.

But when we started thinking about a family, all I could think about was having a boy.  I had four nieces and no nephews and my brother had died shortly before my wedding and all I could think about was a baby boy.  I wanted a boy!  Everyone always says "you will love the baby no matter what the gender" but I knew I really wanted that boy.  Boyz (plural) still scared me and if I knew my second child was going to be a boy, I probably would have preferred that my first be a girl, but since nothing in life is certain, I just wanted that boy.

Lo and behold, Joe was born and there was much rejoicing.  Both sets of grandparents and mom and dad were all thrilled.

Joe was absolutely the most beautiful baby EVER (and I had numerous strangers come up to me in public to reinforce that belief) but he wasn't always the easiest baby.  It took me a long time to decide to have a second baby.  DH wanted them closer together, but I was thinking 10 years apart was about right!  The thought of two boyz no longer scared me.  I just wanted a "typical" child.  Ha!  Does karma have a heck of a sense of humor, or what?!?!?   At least Alan was a much easier baby!!

So back to why I am thankful for two boyz ...

1.  Boyz are tough.  I have a dear friend that has a daughter Joe's age.  They both got their braces at similar times.  Sweet girl would be in the nurse's office several times a week for Tylenol.  Joe never asked for pain killers.  In two and half years.  Tough kid.  Alan cut his head open and I found out when I found the bloody washcloth he used to try to clean himself up.  Even tougher kid.  Thank goodness for boyz.

2.  Boyz consider shopping to be a chore which is also how I look at it.  I never have to take them shopping to cheer them up!  Thank goodness for boyz.

3.  Boyz' toys are much better than those specifically "for girls".  I hate the color pink and find changing a Barbie's clothes or matching her accessories to be boring.  But building a railroad track?  That is fun!!  Thank goodness for boyz.

4.  Boyz' books are better.  I'd much rather read Percy Jackson or even How to Train your Dragon than The Twilight books any day!!  Thank goodness for boyz.

5.  Boyz are usually lower upkeep.  They will never want their hair highlighted, a pedicure or the latest handbag.  A suit for prom is a lot easier than finding the "right" dress -- although it might cost as much.  In general their clothes cover more surface area, too!!  Car insurance is more for boyz, but a wedding is a lot more.  Thank goodness for boyz.

6.  Drama is definitely lower with boyz.

In case you missed all the clues, I'll spell it out.  I am not a "girlie" girl.  Despite my obsession with miniatures, I don't care for most things "feminine".  I am an engineer by degree.  I love jeans and t-shirts and my boyz.  So why is today different?

Today is the day I cleaned the bathrooms.  Let's face it -- boyz miss.  A lot.  An awful lot.  Yuck.

Not even a small pebble ...

They say people in glass houses shouldn't throw stones, but right now so many of them are still chucking boulders around it isn't funny.

Just a few short days ago, a fellow Autism parent snapped.  Was it right?  Hell no.  Could it happen again?  Most likely.  To me?  God, I hope not.  To someone else I know?  Maybe.

There are so many questions and so many possibilities to our lives and those of our children and yet so many people (especially special needs parents) are still so trapped.  When Alex's mother stabbed him repeatedly earlier this year, so many people were so quick to condemn her.  How can any mother kill her child?  Others tried to be understanding.  She was just dealing with so much.  In turn, these people were vilified by the autism community.  There is no excuse for killing your child. 

No excuse perhaps, but sometimes people snap.

The statement has been made over and over again, "God never gives you more than you can handle."  I happen to disagree with this immensely.  Mental illness throws everything out the window.

If a typical teenaged star athlete commits suicide, does everyone instantly label the parent as bad?  Maybe.  But most likely there was some mental illness that caused the child to lose hope and lose the will to live.  If a mother (or father) of a typical child kills him/her there is instant horror and outrage.  How could he/she be so selfish?  But when a parent arranges a murder-suicide the first assumption is usually (I would hope) "what brought them to this point?"  After all when you try to take your own life as well it isn't so much selfishness as despair.

So many people have never dealt with the intense violence that was a part of Kelli and Issy's life.  Many have never dealt with the crushing choices facing them.  How about living 2.5 hours away from your home and the rest of your family in order to have your child go to the best school?  I am willing to bet not many people could take that one on the chin and keep going as though nothing happened.


Autistic people will say that if you try to justify a crime like this you diminish an adult autistic's life.  I think it is safe to say that Issy's life (and Alex's) were already diminished.  Does that make it right?  Hell no.  Does that make it sad?  Immeasurably.

So before all the haters out there jump on me for excusing or justifying this crime, let me be clear.  I AM NOT!  I am trying to understand.  I just want to keep this from ever happening again.  I wish I had answers.

Maybe this hit me especially hard because both these children were 14 and my Alan just turned 15. 

All I know is I'm not throwing any stones at Kelli ... not even a small pebble.

Driving Julie Crazy

Someone once gave me a small plaque that said "Whoever said you only go around once in life, never had carpool duty."  

The funny thing is, I didn't really mind carpool duty most of the time.  When Joe was in grade school we found another family with whom we meshed perfectly.  I didn't mind driving in the morning, but really did not like waiting in the after school carpool line.  The other mom didn't like getting up in the morning but didn't mind the after school drive.  It was a good fit.  We continued to carpool through two kids each and two schools and it always worked out well.

Unfortunately not all carpooling is so pleasant.  And when you throw special needs into the equation, things can get VERY interesting!

I had the kid that wanted to listen to his choice of music in the morning.  Sorry, kid, you want a happy driver and I get very edgy when I don't have my tunes.

I had the time that Alan was going to school a half hour away from home (and then I had to drop Joe off) before I could go home.  Naturally, as soon as I pulled into the school parking lot, Alan sprayed his breakfast all over the back seat.  Yuck!!

I had the little girl who would only listen to certain songs (and I had a limited number of them on my CDs).  I got to hear Lady Gaga's Just Dance song four times one morning because that was how long it took to get to school.  Thank goodness that was a close school!

I had the child wearing so much scented body lotion, I felt like I was attempting to walk through the department store perfume department.  Have I mentioned that I'm very olfactory sensitive??
  
I had the time that a police officer pulled me over and I was so happy that I had FOUR children with varying degrees of autism that were all sitting quietly and correctly wearing their seat belts that in never occurred to me that I might get a ticket.  He did give me one for "improper lane usage" (I got in the turn lane a little before it technically started) and it was all I could do not to ask him who pissed in his Cheerios that morning.

I had the child that used to insult Alan (although never when I was driving).  

I had the kid that unbuckled himself and leaned over the back of my seat to try to turn off my radio because he was going through a "silence" phase.

I had the time Alan's OCD required him to jump in and out of the open car door at least five times before he would get in or out to stay.  Naturally the other ASD boy we were driving decided he would do the same thing.

Then there was the time Alan sat ON another kid.  Luckily he had a sister who was at a similar functioning level and he just calmly said, "Alan, you need to get up."  He repeated himself several times but didn't get angry or upset.

Of course when Alan tried that with another boy, he shoved Alan out the door.

Nowadays I do a lot less driving of Joe so it is just Alan.  Camp started this week so I have been dealing with the afternoon parking lot crazies.  It is probably worse for me this year because I have a new car.  I am so worried I will end up like this!

Between buses that do not slow down when going through VERY narrow openings to the nutty parents and the pokey kids, it is enough to make me wonder if a medicine increase for the summer is in order.  That would be mine, not Alan's.

Trying to look on the bright side

Today is Joe's last day of high school.  When I was younger and so much more naive I used to dream about this day.  "If only I can get him to graduate then _________" (fill in the blank).  Now that I am older and wiser, I realize this is just another twist in the road.

A few months back, Joe was accepted into the VR program at his school.  This is a program that aims to get special needs graduates employed after high school.  They take them on several job assessments and the goal (as I understood it) was to find a company where Joe wanted to work and could be successful as well as a company that wanted Joe.

So why, did the assessor take him to places that he didn't want to work?  Why did she spend so much time telling me why the employer wouldn't want Joe?  If the employer is that difficult to work for, why is she bringing potential special needs employees there?

Most of her complaints against Joe were rather minor.  She tells him to put some cans on a shelf.  He says "Are you sure that is where they go?" and she thinks he is undermining her authority.  Really?  Has she ever talked to an autistic person in her life??  Joe questions everything.  That is just the way he is.

She claimed he was too negative.  This is a legitimate claim against many on the spectrum.  But not Joe.

This is the child that when my sister's cat ran away, he tried to console my sister that she still has another cat.  When I'm running late and am wearing my workout clothes, he tells me that "at least you had a chance to take a shower" when actually I didn't.  When my car was totaled it was "at least we still have two other cars."  This young man could be the poster child for looking on the bright side.

To the age old question of "Is the glass half full or half empty?" Joe would probably respond "The important thing is that you have a glass!"

So now I am facing graduation with an unemployed 18 year old.  I am terrified.  I am sure he will eventually work somewhere although hell will freeze over before I let it be the sheltered workshop she thinks he needs.  The kid drives for crying out loud.  Okay, deep breath mama bear.

At least I have Joe.

The legal system makes me want to break laws

We had the fun experience this week of Joe's guardianship hearing.  We were only seeking a limited guardianship instead of a full guardianship.  We really just wanted control of his medical decisions and to be informed of his financial information.

You would think getting limited control would be easier than full control, but apparently that is not the case.  The first struggle came when the judge read the doctor's affidavit.  His wording was "too restrictive" because it did not spell out that Joe could drive.  Huh?  The kid could legally drive before he was 18 but if we tried to get a guardianship he couldn't drive anymore unless the doctor specifically gave his consent.  Could someone please explain that one to me??

When I called up the doctor to explain the confusion he confessed he had never done a limited guardianship.  Seriously?  Shouldn't those be more common?

When all was said and done, I felt like breaking a few laws myself.  I wonder how guardianship works if the guardian is in prison?  Best not find out.  Deep breath, Julie.

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 ....

Joe is Destined for "Hoarders"

I have to confess I do not watch TV especially reality TV but I do not live in a bubble so I am at least aware of the show Hoarders.  Of course, I also know what a hoarder is since I live with one.

For background, I keep some things but I also pitch, donate or sell a LOT!  I really do not see a need to save baby toys or every craft the kids ever made.  I also try to get rid of books I know I will never read again or DVDs we will never watch again.  I will confess that pictures are a huge weakness of mine but I have even been known to throw away pictures.

So keeping this in mind, why am I so convinced that Joe is destined for Hoarders?

When Joe was in elementary school he was very into what he called "crafts".  Of course sometimes his craft was nothing more than writing a word or a phrase on a piece of scrap paper and cutting it out to show to people.  He would then pile the little scraps of paper on the dresser in his room.  About every two weeks I would go up there when he was in school and throw away two thirds of the crafts off the top of his dresser.  The first time I did this I thought he would get angry with me, but he didn't even notice.  He also labeled lots of things.  We used to buy tape by the case at Sams and DH would bring home scrap paper from work by the box.  He built some amazing things out of paper, string and tape!

This was also a time when he would tell stories over and over and over and over again making very slight changes.  For example, he might tell the story of the gingerbread man, but change it to a gingerbread snowman and then wonder why DH and I did not want to listen.  He would do this so often, DH and I got very adept at pretending to listen.  We both felt bad and yet it was so exhausting to have his chattering at us for hours on end saying nothing really new. 

During this time we were carpooling to private school and the other student we carpooled with was Tina, an adorable little gal with ADHD.  We used to say they were perfectly suited for each other because while Joe would tell the same story 15 times in a row, Tina would appear to be listening attentively because she couldn't remember the last 14 times because of her ADHD.  We later discovered that Abilify made Joe very OCD in this way and after we took him off that medication he improved remarkably.

One year shortly after Joe went off the Abilify, Alan started back to school before Joe after winter break so I told Joe we were going to clean up his room.  I figured now that he no longer needed to make and keep the goofy little crafts he would be a bit more willing to clean up his space.  And while he was willing, the experience was quite an eye opener!!

I found:

• hair toys that were not mine (he had picked them up from parking lots and playgrounds) 
• used sucker sticks (eww!)
• about a half dozen flashlights, rulers, old batteries, and tape measures
• the wrappers from bandaids
• toys that Alan played with but Joe decided to keep in his room so that Alan could NOT access
• a set of little toys like you buy for party favors that we had never purchased for him (shoplifted?)
• one of DH's old pay stubs
• a key to our safe deposit box

Yikes!  It has now been four years since the massive room clean up and while all the  boxes are still there with their cute little labels and contents intact, he is still a hoarder.  He saves every card, letter and ticket he can.  Here is what his room looks like now.

So while this picture doesn't look too bad, I do have to share the story that brought about this particular blog entry.

Joe loves running errands for us.  He is so sweet that way.  He will tell me "that's what I'm here for!"  So one day last week I sent him to the supermarket with some cash and the request that he buy milk and animal crackers.  He comes home and asks if I want the receipt.  It was cash so I tell him "no" and then he says he is going to go put it upstairs in his card box.  Huh?  I can see wanting to save ticket stubs and cards, but why in the world would he EVER want to look at a cash receipt from the time he went to the store for mom and got milk and animal crackers?!?!

Hoarders here we come!

My Pet Gorilla

When I gripe about Alan being home all I hear is "Enjoy it!  They grow up so fast!"  Well, I have some news for you parents of "typical" kids -- he doesn't!  Having Alan home is a lot like having a pet gorilla.  He is somewhat trainable, communicates basic wants and needs but weighs over 150 lbs and is hard to take in public.  

Don't get me wrong, I love my sons very much ... but they are EXHAUSTING!  My favorite day of the year is the first day of school.  When I think about the fact that Alan may never leave home, I want to cry!  When a baby is born you have so many hopes and dreams for him or her.  Those don't just vanish when you get a diagnosis!  

I would love to have family movie nights, but there are no movies that all four of us will watch.

I would love to be able to go to a restaurant and sit down with both my boys and relax and enjoy someone waiting on me.  Any idea what a restaurant is like with a pet gorilla?  We have to be ready to order as soon as the waiter first comes to the table because Alan can only wait so long.  We have to eat relatively quickly because frequently one of us has to take him out to the car while the other one stays behind with Joe and pays.

I would love for family vacations at the beach to be the way they were pre-kids -- lie in the sun, read a book, maybe take a nap, play in the waves.  Any ideas what vacation is like with my pet gorilla?  Last vacation he tried to climb off our third floor balcony on to the one below.  He gets in the ocean and just starts swimming for the horizon.  Yes, I am thrilled he is a good swimmer, but that doesn't mean I trust him to know when he is getting tired and come back so one of us has to swim out with him and convince him to come back in to the shallow water.  That fun task usually falls to DH because he is taller than me.  Forget flying with a pet gorilla -- what if he freaks out on the plane?  That means any trip must be within reasonable driving distance.

I already described what holidays are like with a pet gorilla.  But what about just getting together with friends?  We have some very good friends that do not have any children but do have dogs.  We usually cannot talk Joe into going over there because of the dogs.  On the other hand we almost never are invited to anyone else's house.  Nobody wants a pet gorilla to visit!

Many couples I know go away for weekends and have grandma and grandpa come and stay.  Uh, no.  Not too many 70-80 year olds can handle a pet gorilla!

What about going to church together?  Nope.  The last time all four of us went was Christmas of 1999.  That is a lot of separate services.

For Joe's graduation, for my niece's wedding, for an aunt's funeral ... you name it, we need a babysitter because my pet gorilla can not attend.  Heck, we have to get a babysitter for our monthly date nights.  We have two teenagers!  We should be able to just go out for our anniversary (or whatever) and leave the boys at home, but we can't.  So don't tell me that I should enjoy this time.  I love my boys but caring for a pet gorilla is very tiring and I am truly looking forward to the day he goes back to school!

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???

Growing pains

What an utterly weird and strange day.  Yesterday was Christmas and I must admit that it was a good one.  Alan wouldn't open presents under the tree, but after we brought them to him where he lay on our bed watching his iPad, he opened them willingly enough.  He only had three time outs because we couldn't/wouldn't go out to lunch like we do most other days.  Sigh.  Still visiting with family was wonderful.

So today DH and I decided to do something we do frequently -- see the same movie separately.  We went to see Jack Reacher.  It was very good although probably a bit more violent than I would have liked.  After I got home I asked Joe if he would rather stay with Alan or go to the store for me and he opted to go to the store.  Then he called me as he was leaving the store -- "I am going to go by Barnes and Noble before going home."  O-KAY.  This might take some getting used to!!!  I know most parents struggle with their children's budding independence but as DH put it the first time he was home when Joe left to drive to school, "Is it just me or is it really weird that we just let our autistic 17 year old drive up the street in the dark?"  Nope, not just you babe!

Today was also Joe's last check up at the pediatrician.  Weird.  He has grown so much lately!!!  He is now the same height as my DH.  He has grown 6.5" over the last two years!  When he was 16 he was in the 25th percentile and now he is in the 90th.  They do grow up eventually.  And that is what I keep telling myself about Alan.  He may be a total pain the keister sometimes, but he will eventually grow up and be a young man.  Hopefully he is as at least half as nice as his brother.

Long Nights, Impossible Days ...

It has been several days since I had anything to talk about so the blog has been silent.  I never planned to write regularly on the weekends (emergency venting only) but I also missed yesterday.  Mainly this was because I spent the day car shopping.  I took Joe to school and then drove from car dealer to car dealer test driving new and used cars.  Fun, fun, fun!

Last night Joe walks into the room and asked me, "Mom are you going to need my car tomorrow?"  It is hard not to laugh when he says things like that.  I feel like I have to ask permission to use the car that is still in DH and my name, paid for with our money and insured with our money.  Still we have told him it is "his" car so it isn't like I can get mad at him for calling it that!

But really it was Alan that was jumping up and down on my last nerve last night (I asked DH when he got home from work if he could hear the twanging outside or not).  Alan walks in the door from school and instantly starts saying "medicine, medicine, medicine" until I give him his medicine.  We don't want to give it to him right away because he gets tired earlier in the evening if he has it too early so we try to wait until closer to 5 which is about 45 minutes after he gets home from school.  Last night for grins (and to keep me from going positively postal) I decided to count how many times he said it in a minute.  

The first minute he said it over 25 (I lost count), the next three minutes were 2-3 times per minute (he got distracted by a hangnail), the next was 8, the next 3, then 5, then 9, then 16 and then Mom snapped and put him in time out.  Of course this whole exercise in waiting is rather pointless because he always wins in the end.  The best way to extinguish an undesirable behavior is to ignore it but ultimately he will always get the medicine and I just do not know how to get around this.

Later after he had his medicine I was doing something at the kitchen counter and could not get him his "dinner" and once again, he just stood in my way and kept repeating his desired foods over and over.

Long night ....

The Silver Lining

While an accident is never a good thing, it can really affect a special needs family.  Yesterday, I was t-boned and my car was totaled.  I am, for the most part, fine -- just really sore.  So often it is hard to see the silver lining for the cloud.  This was a pretty big cloud after all!!

But while talking things over last night with the DH, I really got to thinking about how important each little cog is to the family machine.  While I do not consider myself to be a little cog (I am actually referring to the car) it is just amazing when you consider how every part of your life impacts every other part.  One of DH's co-workers was in a very serious accident less than two weeks ago and has multiple broken vertebrae and other bones as well.  He has feelings in all his extremities and his prognosis is actually relatively decent but he is still in the hospital and might be for months.

DH did say he wasn't sure how he would handle everything without me.  I thought that was pretty sweet as so many times I feel like my part of the household is so much smaller than his.  I know I do a lot, but I also have a lot of free time during the day to do what I like.  I spend a lot of time on the computer, doing my hobbies, reading and having lunch with friends.  But as he pointed out, if I were in the hospital like his coworker, or if I had lost an arm or a leg or something equally extreme, him trying to deal with that as well as the boys on a daily basis and keeping a fairly demanding full time job would become next to impossible.

Many, many people have pointed out to me that cars can be replaced and that the important thing is that I am (mostly) OK.  I need to focus on that and quit being so hard on myself.  The timing might stink, but really, when is a good time to have an accident??  My fabulous husband is the silver lining in this particular cloud.

Grateful for a Diagnosis

I never thought I would say this (let alone think it!) but I am so grateful today for my sons' diagnoses.  

Joe is taking a class on Sex Ed from a local company that specializes in special needs kiddos.  Most of their clients seem to have MR or something similar, but they are working to branch out into autism.  Joe has taken a couple of art classes there and liked them well enough but he was always the highest functioning kid there by far.  When they came out with the info on this class DH and I were all over it.  Special needs kids are much more likely to be sexually abused than their typical counterparts and Joe is so naive about things (and uninterested in talking about them) that we figured this was perfect.  As well, there is a young lady at his school with whom he is quite smitten and we figured before we let him actually "date" he should have a clue about was and wasn't appropriate.

The first two classes were relatively uneventful and didn't prompt him to want to discuss things at all.  Sigh.

Then last night a new student walked in and lo and behold it was Tina, a girl with whom Joe had gone to grade school and upon whom he used to have an enormous crush!  They had e-mailed a bit earlier in the calendar year and upon snooping through the e-mails I became even more convinced that this kid needed some boundaries.  She "broke up" with him in April and at first he was quite upset but then he seemed to get over it.  This fall he became smitten with Helen and we were thrilled.  Helen is a sweet girl and seems just Joe's speed and we always thought Tina was waaaaaaaaaaay over Joe's level.  

So Tina's mom called me last night to talk about the fact that both kids were in the same class and she told me a little bit about why she had enrolled Tina in the first place.  Yikes!  Tina was meeting guys at a local park after telling her parents she was going to church youth group and so her driving solo has been cut.  She was sexting and meeting guys in online chat rooms and several other dangerous behaviors.  But ... since she doesn't have a formal diagnosis (other than ADHD) she doesn't qualify for a lot of the services that they are now trying to get.  

The whole conversation made me so thrilled with some of the choices we had made for Joe over the years.  We opted to send him to a rather large public school with a lot of support instead of a small private school like Tina attended.  He has done the work program through school and has been accepted into the vocational job placement program upon graduation.  He has participated in a volunteer program for the last few summers and was told by one of the volunteer sites that they were likely interested in hiring him after next summer if he worked that hard again.  We hope to enroll him in the community college in the fall and have him take a couple of classes to hopefully improve his future employ-ability.   In general, his outlook looks good.  Maybe he doesn't have a scholarship like some of his typical peers and maybe he isn't even going to attend a four year college, but he is happy, mostly trustworthy and generally a good kid who will most likely be gainfully employed within a few months of graduation.   

Overall, his future looks so much brighter than Tina's mainly because of his diagnosis and the choices that we made that got him the support he needed when he needed it.  There but for the grace of God go I ...

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")