Guest Post by Flannery of The Connor Chronicles

I am thrilled to announce this Guest Post from Flannery @ Life on the Spectrum: The Connor Chronicles  Flannery is a hilarious, cut-the-crap, honest writer.  You can not read one of her posts without laughing, crying or both simultaneously.  Her son5 year-old son Connor has severe ADHD and mild Aspergers.  Please go CHECK OUT HER BLOG  if you have a need to smile.

The sun is shining brighter, the air smells delicious, and there’s a bounce in my step from walking on fluffy, cotton-candy clouds.  I’m as giddy as a tiny sprite, visiting the Magic Kingdom for the first time.

All this boundless love and cheer is sponsored by:  THE START OF A NEW SCHOOL YEAR!!!!

Yay for school!!  No more summer camp!  No more phone calls before noon, to pick up my unruly child!  No more walking in and seeing camp counselors holding ice packs to their swollen, red shins (true story).  No more living in fear that will lose my mediocre-at-best job!

The people at school know what they’re doing.  They have a handle on things, damn it.  I have acronyms that guarantee they have to work with my child; IEPs and BIPs and there’s even an IRI.  These people know what they’re doing and can handle shenanigans.

And as the first week of school draws to a close, the bliss is that much sweeter because it was a GOOD week.  What’s that you say?  A good week??  How long has it been since we’ve had one of those??

Well, since school ended, basically.

After the first day, which was all-day at extended care, there were no more incidents of hitting or biting.  And this makes me happier than a stoner at a Grateful Dead concert.  You know that super-annoying, repetitive, makes-you-feel-like-you-want-to-blow-your-brains-out smurf song??

“La, la, la-la-la-la, la, la, la, la-la!!”

Yep, that’s what’s in my head.

That’s not to say the week went off without a hitch.  That would just be crazy-talk.  There was this small incident, that happened two days in a row.  It seems my son is working very hard on the concept of humor, and thinks it’s hysterically funny, during extended care, to come out of the bathroom with his pants down.

“Hahahahaha, heeheehee, his pants are down, that is SOOOOOOOOOO funny!!!”  That is what’s going on in his head during this escapade.

Now of course we talked to him about this being inappropriate, and really not funny or okay.  But after all, he is a six-year-old boy, so it’s rather hard to convince him that having your pants around your ankles isn’t the funniest thing since Jim Carrey bent over and talked with his butt cheeks.   
Wait, that gives me an idea for behavior replacement...

Luckily he listened, and this has stopped, at least for now.   I can’t help but think he’s channeling his inner Steve Martin, and may have some kind of future in comedy.

But honestly, if I hear “Mommy, look at my butt” one more time, I’m sending for Chris Rock to come and “whoop his ass!”

Don't forget to go visit Flannery @ The Connor Chronicles

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Teens Meet

The teen Aspergers Meetup group got together for dinner last night at a local restaurant.  This group of teens has been together several times now.  They are getting to know each other better.  I am pleased to see them actually conversing together, socializing...appearing to be enjoying each other's company.

The parents have one table.  The teens have their own table.  The parents are chatting and exchanging stories of  our journey to raise these kids.  The kids are exchanging stories and information about their fixations.  There is another young lady in the group who is in love with aviation.  She and Red talked back and forth for a long time, which was great because the first time we met...I don't think this girl said two words the whole time.  In fact, her mother walks over to the table when she is ready to leave...her daughter was so busy talking to Red, she didn't even notice her mother standing there.  Mom sat back down allowing her daughter continue socializing.

This picture is from a Meetup over the summer

We are enjoying the last of our cocktails after dinner when we turn to check on the teens who are sitting behind us.  One teen is giving her mother the "I'm done" look.  Another boy is actually laying his head face down on the table.  I think he's asleep.  They are done...and so are we.

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Friday Funnies

If you've been reading you know this has been one helluva back to school week!  If you haven't been reading, you need to go back through and read this week's posts.  I am happy to report that after much pain and anguish, we had our first really smooth school morning today.

I've been so busy whining and complaining all week, that I have given any tribute to the son who has been doing the right thing all week long (for the most part).  Blue is in heaven during this back to school week. He thrives on the routine and schedule.  He likes all of his teachers so far.  He is more organized than I can ever hope to be.  He is maintaining his agenda...tells me in very certain terms what specific school supplies he needs and he rides me until I get them.  He makes sure I am on my job, just as he is.   I thank God for this blessing.  I don't know what I would do if I had 2 like Red.  I do know that I would be a much heavier drinker!

So here's a little light reading for the Friday Funnies:

My friend Elena posted this on our "Confessions" Facebook Community Page  (btw...if you haven't joined this community yet...you really should.  We have such fun there supporting each other, answering questions, whining and commiserating).  
This comes from Elena's 8 year old Aspie son:  

"Why are we going to this CVS?" ..."What's wrong with it?" asks mom.  ..."Well...it's not as stylish as the new one down the street."  "All CVS's are the same," says mom.  "What...are you blind?  You really need to work on your sense of style, mama, cuz this store is uuuuugly!"

A conversation between me and Red:

"I want to get up in my own time!  I hate school.  I do not want to go.  The work is too hard!  I just want to stay home and be on my computer all day!"
"Do you want to be poor when you grow up?"
"No!  What do you mean?"
"Well people who don't have a high school diploma...don't have a lot of options for good jobs.  So if you want me to assist you in being poor...we can start now so that you will know what it's like. People who are poor can't afford computers so we can go ahead and get rid of yours.  They don't have cell phones ...so we can get rid of that too.  They definitely don't go out to restaurants for lunch, so I will just take you right back to school after this appointment.  They are often hungry.  So when would you like to start?"
"I don't want to do that mom!"
"Oh...than I guess you better go to school and get that diploma."

Facebook Musings: 

My friend from high school posted this.  I don't know where it came from originally, but it was so funny...I have to share it!

OMG!!! I was in the public toilets and had just closed the door when a voice from the next cubicle said, "Hi!  How are you?" Embarrassed, I said, "I'm dong fine." The voice said "So what are you up to?" I said, "Just doing the same as you!"  From next door, "Can I come over?" Annoyed I said, "rather busy right now." The voice said, "Listen, I will have to call you back.  There's an idiot next door answering all my questions."

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Karen Plus 2 (Aspies)

No I don't have 8...but doesn't 2 Aspie teens = 8 atypical kids?  I really think I have the makings for a reality show.  People would find it entertaining that it takes 2 adults, sometimes 3,  to get two teenage boys out the door and to school on time.   The refereeing, the coaching, the nursing, dispensing therapy, cooking,  singing,  fighting...it's an action packed comedy show all before 9 a.m.

Luckily, someone with a spine lives in this house.  Dad did take the computer out of Red's room after yesterday's missing the bus fiasco.  Believe it or not, there is no major meltdown when he comes home from school.  God is with us...instead he comes home and passes out on the couch for a couple of hours.  He isn't happy,  there are plenty of digs and insults to his brother before he passes out, but he has nothing better to do so he catches up on some zzz's.  He wakes up, bitches some more about how unfair we are being, eats dinner and passes out again.  Obviously, the boy needs some rest, and the natural consequence allows him to get it.

When he awakens and starts the fuss, "This is so NOT FAIR!  I have NOTHING TO DO!  Can I have my computer back? Can I have my computer back? Can I have my computer back? "  I guess he thinks if he keeps asking the answer will suddenly change?!

"You get up and get out on time...so that the bus is not waiting for you, you get your computer back tomorrow.  You want to move your turn off time back to 9 o'clock, do it for 5 days in a row.  You want your new cellphone do it for 5 more days."  Sound fair???  This is outrageous as far as he is concerned.

So here is the reality scene this morning:

Red wakes up with his alarm clock...lays there for a few minutes.  I enter and tell him to get in the shower.  He lolly-gags a bit.  Finally gets in oh say...15 minutes later.  He starts singing at first, then moves on to repeating the dialog from a movie or t.v. show...LOUDLY!
Blue burst through the door out of his room..."He's singing!"
"Go back to your room.  Close your door...turn up your music and get dressed.  You won't here him." Blue looks at mom like she has a third eye.
Red gets louder...not singing but talking...dialog.
Blue busts out of his door and into the bathroom door! Screaming back and forth ensues.  I hate you's are tossed around like a frisbee.  Mom gets physically in-between them...sends them back into their corners.  (Referee).
Dad hears screaming.  He gets up out of bed groggily and goes into Blues room to help calm him (Therapist).  Mom pushes Red along to put clothes on.  He's still naked with a towel rapped around him.
Mom moves downstairs to start coffee and breakfast (Cook).  Dad sends down Blue.  Mom sends Dad into Red's room to prompt him to keep it moving and stop staring into space.  A few minutes pass...no Red.
Mom yells upstairs, "I really want you to get your computer back today.  Are you moving?"
"I'm coming mom!"
Mom gets Blue moving so that he can get up from the table before Red comes to the table.  She is trying to prevent The Color Purple (Blue + Red =Purple).  Red arrives...Mom sends Blue around the opposite way through Nana's room to head upstairs and finish getting ready.
Red eats breakfast...cereal, eggs, and toast.  Error...mom only makes one piece a toast.
"Are you kidding me?!  One piece???"
"Um...lets rephrase that son."
"Can you please make me another piece?"
"Sure."
Mom gives meds with water (Nurse).
"Can I have Silk milk?" says Red.
Are you freaking kidding me??? Just take the meds already! Thinks Mom, but she does not say.
Red finally takes meds after asking over and over again about Silk milk. "Why can't I take my meds with silk milk?"  X's five.  He asks this question 5 times over and over again in a row.  The answer does not change.
He is finally putting on shoes...bus shows up 7 minutes EARLY!
Mom reassures, "You're fine...just get your other shoe on."
He leaves!!! YAY! He earns his computer back for tonight.
Blue comes down from hiding, puts on his shoes, gathers his things.  He is picked up by carpool.

It's 8:15 a.m.  Mom is freaking exhausted!

48 Hours

Within 48 hours we go from, "Mom...you can go ahead and get a job.  I think I'll be fine at school this year. I don't think I'll have any meltdowns."...to "I'm NOT going to school!  I'm too tired!  I want to get up in my own time.  School starts way too early!"  Half the kids at that high school feel the same way.  School sucks!  It starts too early!  I'd rather be sleeping.  Well guess what?  Doesn't life just suck?  That's too bad!  There are plenty of things we don't feel like doing that we have to do anyway!

This is day 3 of 10th grade.  On day 2, Mom has to repeat herself about 25 times for each step of getting ready and out the door for the bus.  They still had to wait for him for almost 5 minutes.  Why?  He's just sitting there staring into space instead of putting his shoes on.  Meanwhile, I'm sweating bullets.  I feel so bad for the other children who are sitting on the bus waiting.  They got up early and didn't feel like, yet they may be late because of who?  My son! Why? "Because I'm tired!" Why? Because my body is getting back on track with this whole getting up early thing.  I just got back from the east coast a few days ago.  I'm used to sleeping my days away like I did all summer.  Oh...and lets not forget, I refused to turn off my computer until 10 o'clock.  Then I had to play with the dog for a while before I decided to go to sleep last night.  Therefore, I didn't get enough rest.

So guess what?  The natural consequence is that the computer will turn off, like magic at 8 p.m.  Poof! That's the magic of parental controls, since the boy apparently needs so much rest.  As his mother I am obliged to make that happen for him.
"I hate you!  That's not fair!  You're just trying to piss me off!" he yells to the top of his lungs, when I tell him how it's going to go down.
"No...I'm not trying to piss you off.  I'm trying to make sure you get the rest you need so that your body can readjust to getting up early, so that you can be on time and not have the bus waiting for you in the morning."

Of course I know that taking away computer time will piss him off.  But hey, he needs a wake-up call...literally!  Life does not conform to you...you have to conform to life.  You don't have to like it.  Hell, I don't LIKE getting up and dealing with your ass!  But, I have to do it!

He's posturing into meltdown mode with the yelling, and banging his fists on the table.  I remain calm.  I try to stay in control of the dialog...keeping it positive.  Giving him all the reasons why I am doing this to HELP him.  Giving him the work scenario, "You have to be on time if you have a job,"...blah, blah, blah.

He goes on telling me how he's not tired!  He doesn't need any extra rest.  While protesting, he starts nodding off in the chair in the living room just after 8 p.m. when the computer turned off.

This morning...he gets up relatively on time.  I only have to repeat myself 10 times instead of 25.  He has eaten, taken his meds, put on his clothes and shoes...everything by 8 a.m.  He then decides to sit staring off into space instead of finishing the final touch of brushing his teeth and washing his face.

I start off with...if you want to move your computer time back to 9 o'clock. you need to get up now.  He doesn't budge.  The bus arrives @ 8:15 a.m.  Teeth are still not brushed, face not washed.  He is refusing to move.  I tell him how unfair he is being to the kids who are waiting on the bus.  "I'm tired!" This is ridiculous!  At this point dad is downstairs getting into the mix.  A few minutes pass...I finally tell the bus to go on.  It's not fair to put everyone behind.

Yeah...sure!  I can go out and get a job, that I will be late for every other day depending on his mood.  This is bullshit!  And I'm tired!  Yesterday, I had my appointment with the private school.  I was so impressed with their program and approach, I was ready to sign on the dotted line.  Ready to pull money out of one of our accounts, borrow against life insurance, whatever...to put him into this school. The thing is...I would be responsible for his transportation everyday.  Do you think I'm about to PAY money for the aggravation of will he go?  Will he stay? everyday freaking day!?  I don't think so!

This boy needs to live in a boarding school...residential treatment or somewhere!  I can not deal with this everyday for the next 3 years.  He has got to get with the program!  Aspergers or no Aspergers!  You can not live here and do nothing!  I'm sorry...but despite his disability, he will be a productive citizen of the United States.  I am going to do everything within my power to make that happen.  I refuse to accept, "I can't do it.  It's too hard.  I'm too tired!"  I will give you all the support you need, but you will get an education, one way or another.

My confession today?  My name is Karen and I'm pissed!

So what do you think should happen when he comes home today?  Should the computer go off @ 8 p.m.?  Should the computer not even be in his room when he comes home?  Should it be @Goodwill? 

It's a Different World

I realize that people with Aspergers look at the world differently.  My nearly 16 year-old son definitely has his own outlook --unfortunately it's very doom and gloom.  After spending a great day with a friend here at the house,  we drop his friend off at home.  He shoots me with a barrage of negativity all the way home on the 25 minute ride.  I was so negged out by the time we pull into the driveway, I realize that I completely forgot to stop at the grocery store.  

I drop him off and continue to the store, which has become a chore that I loathe.  Suddenly, the grocery store was my best friend.  It's like 10 o'clock at night.  I think I was there for well over an hour.  I find myself alone, taking my time on each isle, relishing the reprieve from negative input into my psyche.  I try to turn around the negative conversation, but for each positive thought, he comes up with a negative.  How can you not absorb some of that negative energy when you are surrounded by it?

"I don't want to go to school.  The work is too hard for me.  You don't understand.  I have a learning disability."
"You don not have a learning disability."  (You have a lazy disability) "How does someone who has tested commended on TAKS have a learning disability?  You passed every single class last year."
"Well...it was hard and it's too much work."
"You have 2 resource classes and in your regular ed classes, your work is modified. You hardly have any homework and you have a lot of support."
"Well it's still too much work."
"I realize that it may not be fun, but you CAN do it. I wasn't in love with history or Algebra either, but I got through it."

I change the subject and start asking questions about airplanes, his trip...anything just not to have to hear the negative thoughts.  Somehow he changes it back.
"And those kids...they better not start any crap with me.  And so and so is still my enemy,"...and on and on. "
And those teachers...they are mean to me.  Mrs. So and So screams at me and she's always rushing me to do my work."
"She's not actually screaming at you...she is just trying to keep you on track." (Anyone who asks him to do anything that he does not want to do is screaming at him.)
"You're lucky to have someone to help you stay on track and not have you just floating out there trying to figure out what to do."

The conversation leaves me wondering...how much of this is just not WANTING to do the work?  Is there any substance to his complaints.  It's hard to say when that's all you get is complaints.  He is just so unmotivated...totally opposite of his little brother, who wants nothing more than to do his absolute best.  Oh Vey!  This boy is exhausting.

Well...cheers to the first day of school.   I am going to remain vigilant and hopeful.

My confession? I celebrated with Bailey's Coffee and a nap as soon they left!



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By Best Special Needs Blog

Friday Funnies

We registered for classes at the high school today.  I am hopeful for a good year.  Red seems at peace with the decision.  The stars appear to be in alignment.  First thing this morning I get a call from Special Transportation.  He doesn't have the same "drruunk driiiver" (that's what Red called him) that he had last year.  In fact, I know his driver personally.  She used to be the Library Assistant at our elementary school.  I worked with her frequently during the book fairs.  He also has a friend who will be on that bus.  The two of them can commiserate about how horrible school is on their way back and forth.

He is going to try the wrestling team, which will give him a small group to be a part of.  He will also take a web design class, and a vocation exploration class.  He has two teachers that he had and liked last year so there's a since of familiarity going in.  I also talked to the counselor about setting up a lunch retreat area for students like Red who just can't deal with the loud crazy cafeteria.  She is open to the idea but needs to work out the logistics.

I pray with the new meds in place and the B-12 supplement that he is taking, he will have a better year.  Continuous prayer and positive energy sent this way is sincerely appreciated.

On to the Friday Funnies...

The phone rings...it's Red's friend on the line.  He is upstairs, laying in his bed, having a nail biting festival.  I call him, "Red...telephone!"
"O.K." minutes pass, he doesn't pick up.
"Telephone!" I say again.  He still doesn't pick up.
"Someone is on the phone for you!  Are you going to pick up the phone or not?"
"No there isn't.  The phone is not ringing."
Wow!  Sometimes this kid is brilliant!  Other times...not so much.

I am going to a girls night out to listen to Spoken Word in downtown Austin.  The boys are going to meet their dad for dinner @ Chili's.  We pull into the lot.  I see Daddy's car.  "How do you know that's Dad's car?" they ask.
"I know because of the sticker on the back for our sub-division."
"Are you sure?"
"I'm sure."
They are not convinced.
I look for a close up space so I can run in...make sure they find him and run back out.  This is the space I find:

"Mom you can't park here!"
"Yes I can.  I will only be here 10 minutes."
"You can't!  You're not getting any food to go.  They're going to crush and melt your car!"
"Just come on.  We're going to find your dad.  It will be fine."
Red just sits there staring at the sign.  Blue runs into the restaurant.  "Bye Mom...we'll find dad.  Just go on.  Hurry!"
"No...I need to make sure.  Remember you didn't trust me when I told you that was Daddy's car."
Finally Red slow pokes on into the restaurant.
He's looking around suspiciously.
"I just saw a police car Mom.  You'd better go."
"Just relax. It will be fine."
"No it won't mom."
"They are not ACTUALLY going to crush and melt a car. They are just trying to discourage people from parking there."
"Well why would they say that?"
I kiss dad, take a sip of his soda and go on my merry way.

I shared the above picture with my friends on the Confessions Facebook Community Page  In response Sabrina posted this:

Do I dare share this one with the boys?



My Comments are acting weird...until I get it fixed feel free to leave comments Here on Facebook

He's Back

And already my heart is heavy with worry and doubt. 

He comes home with smiles, hugs and great stories about his trip.  It actually appears that he missed us.  He actually asked me to bring Harry (our dog) to the airport.  Of course, I didn't do that.  He couldn't wait to see him. 

His grandma took good care of him.  He had a fabulous time at Myrtle beach, swimming in the pool, the ocean and at the water park. Once they were back in Maryland, she indulged him with multiple trips to the airport so that he could spot planes. On his last day, he got lucky, the rain stopped and grandma took a day off from work to take him to Six Flags, Great America!  He is a roller coaster enthusiast and was able to ride all of the coasters multiple times.  

He spent time hanging out with his cousin.  They went to the beach together.  They stayed up late talking and playing games.  It can't get any better than that! 

 

The only negative on this trip was his relationship with his grandpa.  Grandma's husband is 81 years old and totally old-school.  There were no special needs concessions from him.  He talked to Red just like he talks to all of the grandkids.  "Boy...get over there and sit down!  Don't look at me like that! You better eat that food!"  He doesn't mean any harm...that's just the way he is and at his age, he is not going to change.  He didn't talk to Red any differently than he does to his cousin who just about lives there.  That was hard for Red to take.  "Why is grandpa so mean!?"  He wants everyone to be all warm and fuzzy --to repeat themselves 39 times without loosing any patience.  

Grandma is the soft touch...the mediator between them --that is when she wasn't working.  Grandma is a petite woman like me standing about 5 ft. tall.  She too is no nonsense, but she can make her point without raising her voice.  

Missing his flight in Chicago turned out to be a blessing in disguise for him.  It's one of the busiest airports in the country...a great place for plane spotting.  In the unaccompanied minor lounge, there were windows so that he could watch airplanes, up close and personal.  They also gave him a voucher so that he could buy a meal at Mc Donald's.  Poor dude!  Mommy's all worried and he is living it up! 

He is full of smiles and conversation once we get home until it gets late and he brings up the subject of school.  

"I really don't want to go back to that school.  People make fun of me.  I have too many enemies.  I don't know how to do the work.  It's too hard.   Those people don't understand me. I don't trust Ms. So and So.  That school is the source of all my stress.  I'm just really worried mom." 

I bring up all of the positives.

"You have a new friend there now.  He wants you to be on the wrestling team.  That will give you a chance to be a part of a group.  You will be taking a career class that will help you figure out what you will be good at.  They will help you figure out how to apply for jobs --how to write a resume.  You can start to work with the multi-media team, which will ultimately help you in your career."

The truth is as I am saying this, I worry that he will put too much stake in this friendship and that he may be disappointed when he starts to overwhelm this kid and maybe he backs off.  

The truth is I that I am ambivalent about his going back, but I want him to at least give it a try.  I'm not ready to give up on him making it in a regular high school environment.  I'm not ready to make his world smaller, and limited by a small school that doesn't have all of the resources of a larger school.  But is the smaller school what's best for him?  

He starts in with the crazy talk.

"I hate so and so.  I'm not going to get in trouble, but I'm going to make them so mad that they will hit me and then they will get in trouble.  Mrs. So and So is not to be trusted!  I'm going to give her one more chance...but that's it!" 

Oh Vey!  What am I doing? Am I pushing him back into a situation that is going to overwhelm him, cause stress and make all of our lives miserable?  Is this just his fear talking?  Will he really be o.k.?  Or is this my wishful thinking?  Why has my gut instinct been telling me to send him back to give it a chance?  Why am I now doubting my gut feelings? My head is starting to spin. 

I finally tell him to just go to bed.  I can't take it.  My heart is starting to physically hurt.  I am becoming overwhelmed by anxiety.  I'm afraid I will not be able to sleep.  

He's back...and so are all of my worries and doubts.

I love your comments and appreciate your votes...

Keeping Me Up @ Night

Today Red is traveling on a flight from Baltimore Maryland with a lay over in Chicago, where he will catch a flight into Austin.  He lost his cell phone on this trip, so we are relying on the staff of American Airlines to get him from point A to point B.   He is fascinated with airplanes and Chicago is a great airport for seeing all kinds of planes up close and personal out of their huge windows.  I didn't get much sleep last night, imagining him deciding to wonder off to film a plane, getting lost or missing his connection.  I am asking for prayers, positive thoughts, good energy whatever you can send his way, to make sure he gets home safely.

Besides staying awake last night worrying about his flight today, I am still contemplating the school dilemma.  Private...small scale school vs. public huge high school.  The good news is I found out today that the private school doesn't actually start until September 7th, so that gives me a little time to decide.  I will go ahead and enroll him at the regular high school and give myself some time to see how he does and then make a final decision.

Part of me feels like I need to give him the opportunity to see how things go with the new medications on board.  There are a lot of resources that a public school has to offer especially since he has such an interest in multi-media.

At least we have an option should things not go as we would like them to.  I have to continue to stand up for what he needs and insist on it.  My biggest worry is how he does in those unsupervised moments in the hallways and at lunch time.   He can get overwhelmed by the noise and the thoughts inside his head which can lead to impulsive actions.  If they can't give me what he needs to guide and protect him, even if it's from himself, we will take his education  elsewhere.

Prayers, comments, and positive thoughts are all welcome here.

p.s. just before I published this we received a call from the airline to say that he indeed missed his flight into Austin.  There was a gate change and the employee took him to the wrong gate.  By the time they got to the right gate, the plane was gone!  Just WONDERFUL!  The good news is, they are going to escort him to a private lounge and feed him until he can take the next flight.  I will not stop twisting my hair nervously until I see his face.  Needless to say...he will not be taking any layover flights...ALONE in the near future.

Discombobulated Thoughts

Back to school next week.  I am not ready.  Well...I'm ready for them to get out of my hair.  But I haven't done what it takes to make that happen.  Not a school supply has been bought...no new clothes or shoes.  I'm not even sure what school Red is going to.

I've been trying to just enjoy the quiet since he's off visiting his grandma.  He is not here to burst through my door at any given moment with a complaint, or to come in to bother the dog because he's bored.  Why do I have to repeat the same sentence 95 times a day to a 15 year-old boy?  "Leave the dog alone.  Put the dog down.  He does not want to be picked up.  He's resting."  None of that for 2 whole weeks.  I am so grateful for that.

Of course there is no such thing as total peace unless BOTH of them are gone or unless I leave...by myself.  Blue has cranked up his autism a couple of notches while his brother has been away.  He needs more time and attention.  He doesn't seem to want to be alone unless he's playing his driving game on his computer.  He bought this cool steering wheel/gas/break pedal thingy, so it really feels like he's driving.   This has also been a source of contention.  He gets really pissed when he crashes one of the cars in the game.  This is usually taken out on me...sometimes the dog.  Poor Harry...he becomes "that stupid dog" when Blue is in one of his moods.  Red's not here.  He has to be mad at somebody!  So he gives me a little extra dose of drama and attitude.  Only me...lucky me!  I'm the only one who gets to see this side of him.

Thank God for his friends!  He has been so blessed to get together with the twins, his friend Jake and another friend from school throughout the summer.  Last week he even went swimming with my friend and her daughter.  He just can not be in one place for too long.  He's always planning some kind of activity.  I think he gets that from me.  I get it from my Dad.  We are the go-go people.  Blue is the most social Aspie I know!

I got Blue's school schedule in the mail.  Nothing from Red's school -probably because I took him out of school the last few weeks because he was in the hospital.  I need to go jump through the bureaucratic hoops and officially re-enroll him, which I am not even sure if I want to.  I just got some information today on a private school nearby that works specifically with the high-functioning autism spectrum disorder population.  They go all the way through 12th grade.

So here we are a week away from school starting and I don't know which way I'm going to go.  Of course the private school costs. It's not crazy expensive, but it's not something that's in our budget either.  With the economy sucking eggs and all...things have been kind of tight around here.  Feel free to send me a donation.  Make all checks payable to the, "Keep Karen Sane Fund."

I am excited at just the shear possibility of having him in an environment where they "get him" and he can work to his potential and at his own pace...which would be the pace of an elderly tortoise.  The curriculum is web based, and he can move things around however he needs to.  In public school,  he uses up so much of his energy on the social components, stress and anxiety.  How can he possibly focus on learning? He was thoroughly fried by the end of school last year, hence the hospitalization.

He has done so much better over the summer as far as real-deal ugly meltdowns are concerned.  Of course, his stress level has been very low.  He hasn't had those huge social issues to worry about.  In fact, he has made a new friend that he connects very well with and he has made some other connections through our Aspergers Meetup Group.  He hasn't felt that total isolation that he felt most of the school year.  This is a prayer answered.

This private school would work with him on life skills and becoming independent.  It may just very well be worth the investment if we can move towards getting him out of our house eventually.  I want my freedom back! I may never get it completely, but I want him to be an independent young man, living at his maximum potential.

I hope we can figure out a way to pay for it.  Maybe I can see if they will do a two for one.  I could work there to get him a tuition discount!  You never know...

I've talked to Red on the phone the last two days.  He sounds so calm.  It's great to hear.  I pray that he comes home with that same degree of calmness.  Wouldn't that be great?  It will be a whirlwind of changing time zones and getting him reacclimated to going to bed and getting up early for school.  That should be fun.

Anyway...a zillion thoughts and things to do.  None of them add up to writing a blog post that has much rhyme or reason.  Instead, you get to see the discombobulated thoughts that are rambling through the mind of a neurotic mom.

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Funny Friday

After yesterday's sad look at my reality, I feel obliged to share some laughter and smiles with you today. 

My dear friend Elena from the Confessions Facebook Community  sent me this:

We're at a restaurant.  G3 (her 8 year old Aspie) holds up his glass and yells, "Refill!"  Mom says, "At least say please! I don't know what's happened to your manners?  You used to be so polite." 

He says very matter-of-factly, "Life has changed me...that's what happened." 

Of course, Elena doesn't think this is very funny.  If they only knew how much life will really change them.  I believe G3 is pretty insightful...he is a deep thinker, like my son Blue.  He is also very funny! 

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I take Blue and his friends to the YMCA this week so that they can swim and I can work out.  The boys (who also have autism) insist with their mother that they can not change at home.  They tell her, "You're not allowed to walk through the Y with your swimming trunks on.  You have to change there," and they are quite adamant about it.  I don't know where they got this idea, but whatever...no big deal.  Blue has his trunks on.  Twin number 1 has his stuff in his back pack.  Twin number 2, is carrying his few garments in his hands.  

They change...I walk them over to the pool area and make sure they understand the pool rules at this particular Y.  They go off to swim.  I go off to run with the Black Eyed Peas.  

After I catch my breath, I decide to go look for them. They are coming down the hallway also looking for me.  Twin 2 says, "I can't find my underwear!  I can't find my underwear! Please help me find my underwear!"  He is very loud.  Parents are sitting there watching their kids in gymnastics classes.  The other two boys, try to shush him.  They are mortified and snickering at the same time.  The parents are all looking at me like WTH?  I could care less.  I don't even bother to explain.  The truth is...I can't stop laughing...very quietly laughing. 

I encourage the boys to trace their steps.  They go back to the pool deck, where the underwear are laying on the ground.  "Here they are! Here's my underwear!"  He picks them up and twirls them around for all of the world to see.  Discretion? What's that? 

I send them packing to the mens changing room so that he can change out of his wet swimming trunks into his dry underwear.  I tell the other boys to stay with him to make sure he doesn't loose anything else. 

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My friend Sharon from Mama'sTurnNow sent me this one:

Her son Jay comes to her room and starts dancing.  "What are you doing Jay?" she asks.  "Flash Mob," he says.  And then runs out.  (get it...he dances quickly and is gone in a flash).  Later she tells him.  "A flash mob is a group of people dancing."   Later he comes back, with his stuff animals.  Guess he found himself a group. 

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Here's another one from Elena: 

G3 always refers to t.v. showtimes by saying 8...7 central.  He asks his mom to set the alarm for 8...7 central.  She says to him, "G3, we live in eastern time.  You don't have to say 8...7 central.  It's just 8."  He just looks at her and says, "O.K. mama...so did you set the alarm for 8...7 central?" Mama says...(Sometimes he is so brilliant...other times, well...). 

By the way....here in Texas (which is central time) they still refer to shows as 8...7 central.  Hopefully, you can figure out where you are so that you don't miss your show.

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Back to my boys.  I give Blue a few dollars at the pool to buy himself and the boys a snack.  He buys himself a hot dog and a power drink and Skittles.  He buys Twin 1 two hotdogs and a chocolate bar.  Twin two gets popcorn and a drink.  They have just finished their snacks.  I am rushing them home so that they can have dinner before their dad takes them to a baseball game.  Twin 1 turns to me and says, "So...how about dessert?"  

"Dessert?  Didn't you just have a chocolate bar?" 

"Oh...yeah." 

I love these boys.  We are so blessed by their presence in Blue's life and for the laughter that their pure honesty brings. 

Imagine

This is a previous post that I revised today.  I still feel a lot of this pain.  I continue to move through it. A mama's got to do what a mama's got to do...

Imagine hearing your child say "pull the car over on the highway so I can get out and a car can hit me."
Imagine your child having a nose bleed and saying, "Just let me bleed.  I want to die."
Imagine the pain of hearing your child  say, "My life is horrible!" almost every day.
Imagine the pain of  rarely seeing your child smile.
Imagine the pain of hearing your child say,  "I don't have any friends at school."
Imagine the pain of hearing your child say, "No one cares about me."
Imagine the pain of hearing your child say, "I just want to laugh like all the other kids...but I can't."
Imagine the pain of hearing your child say, "I don't think I'm going to have a good life when I grow up.  I think I'm going to end up in jail, or living on the streets.  I don't think I'll ever have a wife or a girlfriend."
Imagine running all over town taking your child to therapists, doctors, counselors, camps, social skills programs, reading everything you can get your hands on about autism and Aspergers --advocating for him at school --only to hear him say, "You just want me to be miserable don't you."
Imagine hearing yourself say, "You have to love yourself before you can expect others to love you" yet feeling deep inside that he may never learn to love himself.
Imagine the sting of the words, "Below grade level" in reference to your child whom you know is highly intelligent, but unable to work to his full potential because of stress, and depression.
Imagine the pain of deciding between stigma and getting the your child the help he really needs.
Imagine talking to a school administrator, or school psychologist -hearing them say, "He may NEVER get it completely."
Imagine the pain of getting the phone call, "The school officer had to be called for your son today."

Imagine hearing a school psychologist or teacher say, "We want him to get this now, when he's still in high school, so that he doesn't end up dealing with the police when he's an adult and they don't care that he has a disability." 

Imagine cringing every time the phone rings and you see your child's school on the caller I.D.  What did he do now?
Imagine the pain of watching your little fish swim in the big ocean called a public high-school, where you know that he isn't equipped to protect himself, even from himself,  afraid he'll be eaten by the sharks or swallowed up in the tide.
Imagine the pain of being in high-school and not having one person you can say is your true friend.
Imagine the pain of watching groups of kids hanging out together, laughing and joking, enjoying their school experience, while you wonder aimlessly alone -every excruciating day.
Imagine that there are thousands of unwritten rules that you are supposed to follow -but it's like your in a foreign land and you don't know the language.
Imagine trying medication after medication, with ambivalence because you don'y want to medicate your child in the first place.  
Imagine dealing with the side effects of psychotropic drugs, having them make matters worse instead of better.  Then trying another and another having it work for a while and then having to start that cycle over again.
Imagine the pain of wondering every single day, if you're doing the right thing.  Are you making the right choices for your child?
Imagine wondering if you will EVER see your child truly happy.
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"All those crazy nights when I cried myself to sleep

Now melodrama never makes me weep anymore

'Cause I haven't got time for the pain

I haven't got room for the pain

I haven't the need for the pain"

-Carly Simon/Jacob Brackman

Looking for a Target

"Autism is Anxiety Looking for a target." -Tony Atwood

Summer days, lounging about trying to stay out of the Texas heat, no schedules, sleeping in, no rushing to make it anywhere on time, no pressures of school, tests, homework, social nightmares. This all sounds so relaxing to the naked ear, but not to the child with autism who actually thrives on a schedule of events.  All of this freedom gives him more time to worry about everything.

There is a drought here in Texas. "Next we will have a famine.  Is it my fault that it's not raining?  Is it because I'm scared of thunderstorms?  Why is God letting this happen?  Is he mad at us?"

For two lovely weeks, there is no sibling to be annoyed by or to argue with.  Where will we put that negative energy?  It has to go somewhere.  The perfect solution?  I've got it.  I will argue and be angry with Mom.  She can be pretty annoying too.  She's always making these dumb jokes that SHE thinks are so funny.  She's always wants to hug and kiss me.  That is so embarrassing.  No -she doesn't do it in front of people, but it's still embarrassing!  She can't answer all of my questions.  Well...she can answer, but I don't LIKE any of her answers.   She's nothing like dad.  See Dad and I -we're so much alike.  We  understand each other better.  We like the same things.  We can talk about anything.  Thank God I have him to talk to.

Mom?  I need her too.  She sure can cook.  When I'm hungry...she's my girl!  She should just wear a sign on her forehead that says, "I am the food lady."

School will be starting in a few weeks.  Although I'm dying for school to start because I love the schedule.  I love being away from home for 8 hours a day.  I love the distance it gives me from my brother.  I love stimulating my mind and challenging teachers.  But I am really worried about having to take 7th grade science.  I have to study about the human body.  The human body absolutely freaks me out.  I don't want to learn about cells and what goes on inside my body.  It just really grosses me out.  "What am I going to do?  I can't get out of it?"

What?  You want me to take advanced math?  I mean I know I did great on my state testing last year.  I know that my teachers recommended me for this class.  Yes -I passed the assessment exam, which determines that I have the skills necessary to take this class, but what if I don't know everything I need to know.  What if  I can't work fast enough?  I have accommodations?  Yeah right?  What does that really mean?  I bet they won't really give them to me.

Yes...I have friends that live nearby.  I usually get to hang out with them a few times a week.  But today, I called so and so and he didn't answer.  He didn't text me back.  "Is he mad at me?"  No -I didn't do anything to make him mad ...but he could still be mad at me.  Why is everyone mad at me?

Is President Obama doing a good job?  Why is everyone so mad at him?

Why do I have to have autism?

"Why can't I just be normal?"

After walking across the park in the 100 degree heat, we finally reach the restaurant where we chose to have lunch.  Blue tried to plan every aspect of our trip to Sea World, including where we would eat.  We purposefully wait beyond the lunch hour in hopes to avoid the crowd.  It is 3 p.m. when we walk into find that we indeed had not missed the crowd.  "This place reminds me of the cafeteria at school," he says.  This is the first clue -not good.  "And it doesn't look anything like it did on the website!"

I stand in line while he and Dad stake out a table.  The one Dad  finds open is a part of long table in the middle of the room that we would have to share with other families -loud families! NOT GOING TO HAPPEN!

Blue steps through the crowded line crossing in front of people with a huge frown on his face, not saying excuse me to anyone.  "I don't want to eat here!  We have to go!" he commands.  I explain that the park is full today and anywhere we go is going to be crowded.  That's a part of being at an amusement park.  "But I don't like the table where dad is sitting.  It's dirty and there's too many people!"  I tell him to try to find another more private table while I wait in line.  I can see him getting more and more agitated and frustrated from across the room.  His dad doesn't seemed to be phased. 

Eventually, Dad does scope out a private table by the window where we end up eating our overpriced, less than mediocre food and drinks. Our plates are covered with napkins to keep the flies away in-between bites.  This is not a 'happy meal'.

As we walk away, with sadness in his eyes Blue says, "I thought this day was going to be perfect.  like it looked on the web site advertisements.) Why do I have to get so mad? Why can't I just be normal?" To which I reply, "Are you kidding? You're fantastic! You're are so smart and sensitive. You're a talented artist! Normal people don't change the world, but you...you are a genius.  You will grow up and change the world to make it a better place!" He looks at me and gives me a half smile. I hope he half believed me.

We spend a total of 11 hours at Sea World in 100 degree plus heat!  All I can say is that I love my son! I love my son!  I love my son!

By the end of the day, we are crippled, aching from head to toe and exhausted!  After the last "Shamoo @ Night" show...he finally looses it!  We have meltdown central right there in the midst of the crowd.

We left our older son at home on this trip so that Blue could be the center of attention and have things his way.  I'm sure it helped cut down on the bickering and disagreements.  However, I am still convinced that the term Family Vacation is definitely an oxymoron.

Days later we meet with his therapist who tells us we have to try to plan not to go to, loud, dirty, overcrowded, overstimulating restaurants. Maybe we should have packed a lunch, or even left the park to go somewhere to take a break.  This was actually what I wanted to do, but I couldn't convince Blue that we could leave the park and come back.  "That doesn't make any sense!" he said.

Each challenging experience is an opportunity to learn.  We have to continually remind ourselves and our son, that this is not a perfect world.  In fact, it's far from it. We are not the family in the advertisements smiling and having a great time. We are the family just trying to get through the day without killing each other.

The InFlexible Travler

I have a friend, a single mom, who just took a 45 day trip across the United States via train with her six-year-old daughter.  They departed from Texas heading for California, Arizona, Colorado, Chicago, Washington D.C., Georgia, South Carolina, and Florida.  I'm sure I'm leaving out a few stops in-between, but you get the general idea.  Of course I am immensely envious of her ability to travel light and see a good portion of our beautiful country.  Would I do the same thing if I could?  I don't know about the train...but taking my time traveling across the United States...definitely.

I love to travel...period.  I am however, a wanna-be first-class traveler.  I am very picky about where I lay my head.  I usually like to bring my own pillow and sometimes my own blanket.  My girlfriends laugh at me for bringing my own pillow to a brand new Westin hotel or on a short weekend trip.  They may have nice pillows, but they don't have MY pillow.  I'm a bit like Linus with his blanket.  I like a clean space and high thread-count, soft sheets.  I would prefer sleeping with a down comforter.  Yes...I am high maintenance, but I can adapt if I have to.

When you are traveling with children...you HAVE to be adaptable, especially when you're traveling with children like mine.  As I write this, I am suddenly aware of why my children are so high- maintenance.  The apple doesn't fall far...   The difference is, I wasn't like this as a child.  I was thrilled to go where ever my parents took me, which was usually to visit relatives, not fancy hotels.  We also did camping trips in a big R.V. that we rented along with 2 other families.  Talk about having to be flexible! I have just become a spoiled adult.  I am perfectly willing to stay with relatives and sleep where ever they can house me.  I may need a sleeping pill...but I can do it.  The other major difference between me and my children is...I do not have over the top anxiety and autism.

Blue likes to sleep alone in a very quiet, controlled environment.  He listens to soft music while he is sleeping, but he absolutely can not stand listening to someone snoring, or even breathing too heavy.  Forget about there being a chance of thunderstorms that could wake him up suddenly.

Once we traveled to his grandparents home in Georgia for Christmas.  His anxiety wasn't as high then as it is now.  But, he still wanted to sleep by himself if at all possible.  We had three families in a small 3 bedroom house mind you.  He ended up sleeping on the floor in the office/laundry room.  He was perfectly content.

When he travels with us...we have to get a suite or 2 rooms.  There must be a door that he can close to block out the sound of his father snoring.  If he is going to have to sleep in a room WITH someone, he must be well prepared ahead of time and then decide weather or not he actually wants to take the trip.  Two years ago we went to Florida where we rented a townhouse with 3 levels that we shared with his grandparents.  He and his brother would have their own room directly across from the bedroom his dad and I shared.  Blue chose to sleep alone on the couch on the middle level, rather than sleep in a full-size bed next to his brother.

On our most recent trip, he starts off unhappy because we are leaving in the evening instead of the morning.  "Why are we leaving so late?  This doesn't make any sense!"
 We were not scheduled to arrive at our final destination until 1 a.m.  Of course, the airline holds us hostage on the runway for awhile and then returns to the gate for mechanical issues, which delays us even further.   There is fighting from across the isles because his brother is biting his nails.  Wouldn't it be easy to simply turn your head and not look at him?  No.  We need to control him.  We need to give him nasty glances and stares.  And he must return the favor by biting his nails even more and looking at his brother while doing so.

Blue's anxiety is palpable.  It takes him a couple of days to get his bearings in our new location.  He gets angry with me for the smallest infraction (and by infraction I mean everything that isn't perfect is my fault).   He wants to unpack and set up his space as soon as possible.  He is angry that there is no fan in the bathroom. This means there is no aeration in-between visitors who use it.  He must be well rested.  Changes in schedule, staying out and up late make him terribly cranky and on edge.

We venture to Washington D.C.  to visit a couple of the Smithsonian Museums.  We drive into Carollton, Maryland where we catch a train into D.C. just for the experience of riding a subway train.  When we arrive on the Smithsonian grounds, we are given a map of all of the sights that you can visit.  All along my intention is to first go to the museum of Natural History.  Of course, there is much discussion about why we should go there first.

We go through the museum and see the amazing dinosaurs and such.  Feet are tired, thirst is never quite quenched the entire time we are in the humidity.  As we are winding down from our first museum, Blue becomes extremely frustrated with the map.  "There is no list!  I just want a simple list that tells you about each museum!" Well I'm so sorry that I can not completely redesign the way they made this map.  Frustration sets in.  He attempts to storm off into the crowd.  I stop him.  Sorry dude...I can't allow you to get lost or stolen.  I am sorry you're so frustrated.

I ask Dad to take him away from the crowd where he can cool down.  I can't do it.  Nothing I say is right, it just makes him more angry.  Dad takes him out into the entry way, where they find a proper book that describes each of the museums.  Mind you -this changes nothing.  The plan all along is that we will move on to the Air and Space museum, because Red has a fixation on airplanes, flight and aviation right now.  This is exactly what we do once Blue gets his head together and calms down.  In his mind...the fact that he now has a proper list, changes everything.  He can now move on.

This is an extremely long day of walking.  The most treacherous part is walking from one museum to the next in the heat and humidity.  We enjoy the air conditioned museums and the displays of our country's history, but it's exhausting.  I find myself constantly sneaking away, finding a seat, pulling out my phone to read Twitter updates (pathetic...I know.  My name is Karen and I am a social network addict).  I couldn't help but think, I'd rather be looking at art than airplanes, but that's a sacrifice you make for your male children who love technology and machinery.  If I want to do the art museums, I will have to go back another time either alone or with a more flexible entourage.

After the last museum closes at 7:30 p.m., we venture out to find something to eat.  We take an open air pedi-taxi over to 7th Avenue where there are a number of eateries.  The pedi-taxi takes us right past the capital building,  down Pennsylvania Avenue...the same route I recognize from President Obama's Inauguration Day.  I remember he and Michelle getting out and walking and me thinking, "Are you kidding me?  Get your butts back in that car before someone shoots you!"  Of course, the Secret Service was way ahead of me.

We exit the open air taxi's. Where are we going to eat? Both boys,  though they are not paying, want to choose.  Their grandmother is with us on this journey.  She is the senior member of the family.  It will be her choice.   When you are with a group, sometimes you have to go where the majority wants to go (or where your grandmother wants to go).  You have to be a little flexible. Well...what's that to a kid with Aspergers and anxiety?  Add together being, tired + hungry + off schedule...then throw in the variable of your mother saying, "Neither of you is choosing the restaurant."  The sum?  I am met with growls, grunts and storming off into a sea of people on a busy street.  When I catch up with Blue he says, "I am getting so tired of you!"  Wow!  I guess he told me.

We get into the restaurant, he pouts and isn't willing to look at the menu.  He says, "I need some time to be alone."  I gladly let him have it.  He returns, and orders a delectable meal that he fully enjoys, which includes a Cesar salad.  I am so excited that he now likes salad!

On our way back to the hotel that night, Blue mentions our friends who took the cross country trip on the train.  "They are so lucky," he says.
"Yes they are lucky and flexible.  It takes a lot of flexibility to sleep in various places, sit on a train for hours, and not always be on an exact schedule," I retort.

I am hopeful that with time and maturity, we will get there.  Meanwhile, the next trip I take will be by myself!  I feel the need for a spiritual journey to recuperate from our family vacation.

Please click below before you go! Thank you! 

Dear Diary

Today I am grateful...

We survived a week of family vacation to Maryland and Washington D.C.  to see my husband's family.  There are many good moments to be remembered.  Lots of family that we have not seen in several years.  Cousins we met, some for the first time, some --so long ago that the boys don't remember.  Time spent with grandparents, aunts and uncles.  Stories of my husband's childhood shared...some of which explain a lot of my kids behaviors.  Ahh...so he gets that from dad!  Confirmation that Blue and Dad are alike in MANY ways!

Meals were shared....bar-b-ques given in our honor.  Stories of family history --what great-grandparents were like...what grandparents were like when they were children.  What Hubby's parents were like during their marriage and during their teenage years.  Family history fills in the blanks, telling us about who we are today because of where we have come from.

Of course, there was the family drama de jour.  Who is not speaking to whom and why? At the same time, everyone comes together long enough to celebrate the marriage and the future of a new segment of the family, squashing grievances and differences --if only for the moment.

A family wedding...a first for the boys.  I busy myself explaining what it all means.  "Why are all of those people walking down the isle?  Are they getting married too?  Are they going to have any food that I like?  Why is the music so loud?  It's too loud in here! Why are all of these little kids running around? When is this going to be over?"

I am grateful for the love and acceptance that the boys get from their family --for the instant connection that they experience every time they see their cousins.  There is no judgement.  There is no, "Why's he acting weird?  Why does he ask so many questions?"  They just hang out, play and enjoy each other.  

I am particularly excited to meet the newest members of our family. Caleb and Aaron ages 1 and 2.  I got some wonderful hugs from Aaron.  I fell in love instantly.

I am especially grateful that Red spent the majority of the time with his grandmother while we were in Maryland.  I am grateful that she is able to see what a piece of work he is.  I am grateful that she is patient, kind and understanding, yet firm enough not to allow him to run over her.  I am the most grateful that he will spend the next two weeks with her!  She will take him and his 14 year-old cousin to Myrtle Beach, where they will swim and play.  They will also spend time at her home in Maryland.  He gets along well with his cousin.  They will have a great time together and I will have a much needed break!

Now of course this vacation also had it's not so great moments.  I will save that for another day.  Today I bask in grace...

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