Friday, September 30, 2011

Aspergers + Change =

The alarm sounds off...he crosses the room to turn it off and crawls back into bed.  I enter the room a few minutes later he is dead to the world...back into a deep slumber.  I tap him gently, "Good's the field trip.  Time to get up."
"I changed my mind.  I don't want to go." His eyes are still closed as he speaks in a drunken slur.
"Well...that's not really an option.  Come on wake up."  His eyes do not budge.
"Can I have a hug?" I ask.  His eyes flicker.  Hmm...I have his interest.  He still loves a hug from his mama.  This actually gets him to open his eyes slightly.
"I need help to get up," he says as he reaches towards me.
I take his hand.  There is no way that I can really help lift his enormous body.  He pulls himself up and gives me a hug.  I scratch his back and his scalp briefly, trying to give him sensory stimuli to help him wake up.  Finally...he is awake.

I've been in stress and panic mode for the past three weeks really.  Having him change campuses within the district was put on the table in our last ARD/IEP meeting.  The word change and Aspergers teen within the same sentence is a recipe for explosion and disaster.  The very thought of this possibility has had him on edge for the past 2 weeks.  This tension and being on edge looks better than it did last spring where he would have been screaming and I'll count my blessing for that.

We finally have the big ARD/IEP meeting yesterday.  He walks into the room full adults, administrators and teachers and immediately lets everyone there know he definitely does not want to go to that other school and all of the reasons why.  He punctuates his thoughts with, "That school is ghetto!"  Of course he has no idea what "ghetto" really is.  Because this suburban school is definitely not that.  It is his home campus...the school that his older brother graduated from.  Last night I ask him, "So does that mean your brother is ghetto...because he played football and graduated from there?"
" HE isn't.  But a lot of kids there are."

Of course this is his own quirky perception along with a few extremely negative comments coming from a friend.  Does this friend go said school? No.  Does he even go to high school? No.  So how does he know how "Ghetto" this school is?  He doesn't...but of course, he has Red convinced.

The meeting totally sucks!  The ARD/IEP Coordinator is rude and abrupt.  She starts off by letting us all know how little time we have to get this done (less than 45 minutes).  The special education teacher races through the FBA (functional behavior analysis) and testing results so fast I couldn't see straight. Of course, I interject with several questions that I'm not sure were ever answered to any level of satisfaction.  My husband is sitting there basically, Mr. Happy-go-lucky schmoozer that he is.  He does ask for them to step up and get Red some reading supports.  We are not happy with his academic progress at all.  At the end, the Coordinator abruptly tries to end the meeting while the Special Education Lead from his home campus is still trying to speak.  I want to reach across the table and slap her.

I leave the meeting not agreeing to anything.  I sign that I was in attendence but do not fully understand everything that was presented.  I have 5 school days to get back to them with any changes that I want. Boy do I want changes!  I am so done with this school...and last night after a pretty good sales job on my part with Red, I think he may be done as well.

Stay tuned...I don't want to say right now exactly what our game plan is because I don't want to jinx anything.  Let's suffice it to say...things are looking up and I am hopeful.

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Tuesday, September 27, 2011

Get Out of Your Own Way

I met my dear friend Elena via this blog.  Have we ever laid eyes on each other? No...not yet.  Yet, somehow we have become kindred spirits.  Her Facebook posts make me laugh out loud, inspire me and make my heart smile every time I read one.  She often shares on my 'Confessions' Facebook Community Page about her journey with 8 year old "G3" she calls him.  G3 has Aspergers and ADHD.  He is so full of joy, love, honesty and energy!  Elena's spirit is also full of love and peace .  She leaves a trail of this love behind wherever she goes.

I once asked her to send me a bit of sunshine when I was feeling otherwise cloudy.  She sent me this:

Elena also sends out these daily blessings via e-mail.  People read them and forward them.  Her intention is to bless as many people as she can.  This one really struck a cord with I thought I would share it with you all.  I hope you enjoy it as much as I did...

Hello from my heart to yours....

"Today’s Project: Learn how to stay out of your own way."   
                                                                    Rod McKuen, poet, composer & friend

I welcomed in the Fall at the beach... fortunately, in Florida, we can do that.... it was a lovely 4 days of reflection... soaking in all that nature has to offer to soothe my soul... the sun... and the sand... and the ocean... and the breeze.. and the afternoon rainshowers... and the seagrapes... and the seagulls... and the crabs crawling sideways and getting tangled in the seaweed.... what I liked best was floating on the ocean on my boogie board waiting for the big wave.. it was quiet out there and I could hear the thoughts in my heart... I was open to receive clarity and understanding for the so many thoughts that go through my mind...the thoughts that stand in my way of moving forward and making decisions and choices that need to be made so that I can continue on my journey to becoming the blessed person God intended me to be...  I let great waves go by just so that I could stay in that peaceful silence a little while longer each time... and I prayed....  

We all needs these kind of retreats from the world and from ourselves... where we just let go and let God speak to us through the wonders of nature... so vast and beautiful is the world that He has given us... we just need to find that "retreat" place where we can go to seek peace... sure I had the ocean this past weekend for this, but I am one with nature... I can find peace in my own yard... I talk to my rose tree and am able many times to see rainbow colors coming off of its leaves .. the energy it gives to the garden around it.. yeah, it may just be the reflection of the sun and the surrounding flowers, but it's like looking into a fairy world of sorts... and butterflies come to me and will let me take them off a leaf to rest on my finger... 

When I lived in North Florida, I found comfort in laying in a pile of dead raked leaves and looking up to the yellow and red and orange ones that had yet to fall to the ground... and when I lived in New York, I laid in the snow and looked up to the pale blue sky and felt like I could see heaven....

Believe it or not, these times with nature help me to "stay out of my own way" ... it's so easy to get caught up in the daily hum-drum of life... to just go with the flow and ride whatever wave comes along, even if it isn't a good one, just so that I can get closer  to the shore... but that doesn't get me closer to being the blessed person I am intended to be...

We all need times of reflection so that our soul's can regenerate.. we need to clear our minds so that our hearts can hear more clearly the messages that we need to catch that "great wave" towards an open shore of vast possibilities ... many of our prayers are answered when we get out of our own way... 

...and sometimes, in the silence of that waiting and oneness with nature, we may hear a voice yelling.. "here it comes, Mama, it's yours... take it.. take the wave... take it.. !!!"  and we do..and we end up all the way on the shore.. beached on a boogie board and basking in the glory of the sun.... and laughing... and laughing at the awesomeness of it...

May you all be able to get out of your own way through reflection... take a nature retreat.. even if only to your own backyard.. just 15 minutes... lay in the grass... open your eyes, your ears, and your heart to all the wonders around you.. be open to receive .. and you may be very surprised to find that you will receive all the peace you need to continue riding the waves of life....  because you are loved beyond measure and are a cherished blessing to the world...

With love,

Sunday, September 25, 2011

Not Doin' That

After a hanging out with a friend Red bribes me into stopping @ Fry's Electronics to buy some software.  He does not have his birthday money with him.  He wants to use my credit card and he will pay me back when we get home.  The software is $ comes to $32.46 with tax.

On the way home he says, "So...I owe you $30.00 right?"  
"No you owe me $32.46."
 "I'm not doing that.  I'll give you $30.00 even."
"  You will give me what you OWE me.  If you had taken your money to that can not tell them, "I'm not doing that.' I just want the software...not the tax.  Paying the tax is not an option.  How are you going to tell me after the fact, what you are doing with MY money?"
He repeats again, "Mom...I'm just going to give you $30 dollars that's nice and even."
Nice and even my ass!
"!  That's not going to work.  If you like, you can do a chore for the tax money."
"No...I"m not doin that."
Oh hell NO! Now you're giving me all of my money!
"Well then I guess you will just be giving me the $32.46.  If you want to make it can just give me $33.00."
"Why do you have to pay tax anyway.  That's not fair!"
I go into a brief explanation as to where the sales tax goes.  Of course, he could not care less.

When we get home he gives me $35.00 even...I give him his change.  "I'm not doin' that."  If life were only that simple that we could arbitrarily decide what we ARE and ARE NOT doing.  I'd have a nice long list of things that I don't want to do.  Boy is he in for a good dose of reality when he gets his first paycheck and he sees all the taxes that they TAKE out.

He's 16...he has so far to go to see how the really world works.  "I'm not doing that." HA!

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Friday, September 23, 2011

The Dirty Dozens

So yesterday's post makes it seem as if everything is peachy around here.  It is far from that...we have received a few wonderful small blessings in this camp...and for that I am eternally grateful.  That doesn't mean life is all "Cumbaya" around here.  The boys still fight and disagree about most things.  Blue is very opinionated and loves to share his opinions with his older brother, which really pisses Red off.  Probably because a lot of Blue's opinions make a lot of sense and he doesn't want his younger brother going around making more sense than he does!  So what is his standard answer when Blue drops a little wisdom on him?
"SHUT UP!!!"  Can you here that from wherever you are?  It's that loud when he screams it!

I tell him, "Saying Shut Up shows a lack of intelligence.  It's like...I can't think of anything else to say so I'm going to just tell you to shut up!  Come on! Get creative!" And so they do just that.

"You're not smarter than me Blue.  In fact, you're just dumb."
"And YOU'RE immature!"
"No....You're immature."
"You're so're like a pre-schooler."
"You're so immature it's like your a baby...coming right out of your mother's stomach!"
"'re ugly!"
"And you need a haircut!  Come here so I can give you a haircut!"
"Eat my shorts!"...ooh good one!
"You're not Bart Simpson.  You're not even funny."
"You need to shave your butt hair!" At this point I'm dying laughing.

I'm sorry...but I just love the creativity coming from these insults.  This from two boys who hardly laugh at anything.  You see crude humor is a part of our family starts with my dad who is truly offensive.  I mean that man can get more MF's into one conversation than anyone that I know.  I am actually offended when he's uses the language when talking to me.  I'm like...hello!  You're talking to a lady here...your daughter nonetheless.  Yet, I find myself saying some pretty incredulous things at times.  There's something about the shock value.  It doesn't always make other people laugh.  My husband HATES when I do this.  He says, "O.K. that's enough Hollywood!" (That's my dad's nickname...don't ask why.) I really crack myself up.

I hear that my brother does the same thing to his wife.  "He makes these stupid jokes and he's the only one who thinks they're funny," says his wife.

I joke around with my kids all the time.  They hate it!  They can be so heavy and so serious.  Sometimes I just want to lighten the mood.  The other day we are coming out of the Y after exercising. It's dark...there aren't many people around.  I have my IPOD still in my ears and I'm dancing my way to the car.  Red starts yelling, "Mom! STOP! Why are you being so silly?  These people are going to think you're crazy!"
"First of all, I don't see many people out here.  Second of all...I don't care what they think," and I go right back to my dancing.
"You don't even know how to dance. You're not dancing right!" says the boy who doesn't dance at ALL...unless he's rocking out in his room to Linkin Park.

So to stop the shenanigans last night...I finally say, "I'm going to record you two and put you on Facebook and my blog."
"NOOO!" they shout in unison.  And that was the end of that!

At least they never got around to, "You're mother's so fat..." Now THAT would not be funny!

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Monday, September 19, 2011

Sixteen is Sweet!

It's hard to believe that sixteen years ago...I gave birth to the most beautiful baby boy I have ever seen.  He was a perfect little blur as they whisked him away quickly because he wasn't breathing when they took him from my body.  It took them 5 minutes or so to work on him before we got an actual cry.  They only let me see him for a moment before they took his little 4 pound, 8 oz body into the ICU where he stayed for 5 days until they could see him actually gaining a little weight.  I couldn't wait to get him home, where the nurses could no longer tell me what to do with my own baby boy.  There was absolutely no fear in bringing him home to take care of him on my own.  I couldn't wait! 

What I didn't realize is that I should have been in no hurry.   I would have a lifetime of years ahead of me.  My life would never be the same.  I would no longer rest on my own schedule, but on his.  In fact, I would almost completely loose who I am, so that I could help develop who he will be in this world. I would be in for the roller coaster ride of my life.  I became a mother...who would give up her own life in order to make his life better.  As I held that perfect baby in my arms...I had no idea really what being his mother would actually mean.

We perseverated over the birthday ALL WEEK LONG leading up to the big day.  He actually sent out an e-mail announcement to the entire family, reminding them that his 16th birthday is Sunday (you know in case they forgot or weren't thinking about it).  He tried very hard to act like it wasn't all about the least he TRIED.  He also made an effort to graciously say thank you for what he did receive, even though it was mostly scripted.  (I know I'm supposed to say thank you and act all grateful...whatever that means, so that everyone won't be mad at me and they will give me more gifts in the future.)  I was glad to at least see him at least making the effort. 

On this 16th birthday, Red opts out of the boring Six Flags trip that he likes to take every single year...mostly because he doesn't really have anyone to go with.  He only has one friend who actually likes Six Flags and roller coasters as much as he does.  Instead, he asked for a dinner party with the Aspergers Meetup group along with a couple of his other good friends. 

So on Saturday night, we met at his 2nd favorite restaurant, Cheddars, because his first favorite (BJ's) is too expensive for a large group.  We had a great turn out and the boys all had a really good time.  It was so awesome to see Red smiling, genuinely happy because he was the center of attention.  This is a lifelong dream for him.

There were about 20 of us in total, parents all sitting on one end of the table while the boys sat conversing at the other end.  Most of the boys were all actually very social, which was good to see.  There were a lot of plain cheeseburgers ordered (no condiments of course).  Most them ordered double burgers and woofed them down in nothing flat. Hubby allowed them all to order whatever they wanted for dessert, which thrilled them all immensely.

The creme de la creme for Red was his big brother showing up for the celebration.  The prodigal son whom we have not seen in months, though he only lives 10 minutes away,  did his brotherly duty, showing up in his Alpha-phi-Alpha fraternity jacket, fresh off of crossing over into the brotherhood.  Red was so proud to introduce him to all of his friends.  Slim Shady, sat down on the boys end of the table and actually engaged in conversation with all of the them.  I think that alone was the single, best gift. 

On Sunday, his actual birthday, Mama slaved over a hot stove to prepare the traditional fried chicken, macaroni and cheese dinner.  This time it was accompanied by a spinach salad, which Red actually ate.  He is trying to be healthy so that he can loose a few pounds to be ready for the wrestling team that he hopes to join next month.  Mama topped off dinner with homemade white chocolate cookie bars with ice-cream.  We all sang happy birthday to him...even Harry our dog tried to get in on the celebration barking as we sang.  It was a very special day for a very special boy.  The difference is this time...he actually seemed grateful.

Blue picked out the most PERFECT card for his brother...
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Friday, September 16, 2011

Poetry Project

The following poems were written by Blue for a poetry project at school.  I am proud to publish them here today...

Party Time 

Come on let's have dinner
Because (Red) is a winner
If you're in the mood
We'll have some good food
The restaurant is the scene
Cause Red is turning to sixteen
Come on down
My Dog

I go to the park
But I don't bark
I am afraid
When I'm home I'm brave
I bark with rage
I am spoiled
I am a lover, (of the ladies of course)
I am a licker
I am a beggar
I am Harry

Plum Tree Haiku
A purple plum tree
Develops more leaves each day
A home for the birds

Dream Limerick
A dream is free 
You feel and see
When you dream 
It may seam
You are what you want to be


Fast, beautiful
Drives, drifts, turns
Mesmerizing, the adoring drivers
Moves, accelerates, decelerates
Sleek, creative

I give him an A+...of course I am a little bias. 

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Thursday, September 15, 2011

Dear Diary

Life has been a little better since I got to go see Sade and John Legend in concert.  She rocked my world or at least shook it up a bit.   Brought back a memory of me growing up in L.A., riding the RTD (city bus) down Adams to Crenshaw to go buy her first album on cassette tape...popping it into my Walkman,  then riding back home listening to her.  This was back in 1984.  I was 19 years car yet.  Each song she sang the night of the concert was a memory of something in my young adult life...old lovers, friends, adventures, those fun times when my biggest worry was what I would do to party on the weekend.

I'm so glad that my husband insisted that we go to this show.  He has taken me to see 2 icons this year...first Janet, and now Sade.  Music is one thing we have in common for sure...of course he is obsessed with his music collection.  He spends hours working on it, ripping it from CD's and organizing it in ITunes.  We really grooved together that night...totally forgetting our worries and how mad we've been at each other.  For a few good hours we were a couple...not parents, which seems like the dominating role we play these days.  Being there reminded me to disappear into music more often to sooth my weary, confused, discombobulated soul.

Other than that concert...we really have had no time or energy for connection lately.  I've been to stressed and obsessed with getting Red's meds and school situation straight.  The good news is...we may finally have the meds right.  His anger is definitely down to a minimum.  His outlook on life is better.  He is still who he is.  He's talking non-stop...rambling on and on from one subject to the next.  Asking for opinions and then telling you that you're wrong.  Asking questions that he already knows the answers to...hardly letting anyone else get a word in edgewise.  It's kind of weird, he's doesn't even get on the computer that much anymore.  He wants to be constantly talking to someone...and he wants your undivided attention for hours on end.  It's quite exasperating...but so much better than anger, rage and holes in the walls.

And then there's my Blue...he's a busy little guy with tons of homework and stress because of it.  Once he gets home...he's so done with focusing on work, and he gets overwhelmed because of the volume of it all.  Then he has his social obligations.  He really thinks he should be hanging out with friends almost daily and he's not exactly happy that he doesn't have the time for it during the week.  He is beginning to get the homework 'somewhat' under control.  He is staying after school for an hour to work on it, and he goes in early sometimes, so that he doesn't have to work much more than an hour at home. Still...that's a lot of freakin' homework.

I am still convinced that the volume of work that he has is because of the freakin' budget cuts in education.  They are shortening classes and adding content...pushing teachers to the limits, and not giving students enough 'practice time' in class the way they did before.  Maybe it's just me...but I think it's ridiculous.  That's all we need is a little extra stress in our lives...caused by these idiotic politicians who didn't plan properly for the most important expense in our state...EDUCATION!   I think they really want to keep the masses in America dumb, so that we won't know how to vote in our own best interests.

My life is full of so many little details...there is so much to remember when you are taking care of a family.  Medical appointments, medications, keeping the house supplied with food, helping everyone maintain a proper diet.  Then I have 2 adults in the house who expect me to do the same thing for them.  After having to do so much for Kendal...I loose my patience, and I don't want to have to take care of a grown man on top of it all.  I know I shouldn't feel that way.  After all, he works extremely hard to take care of all of us financially.  But sometimes I want to say, "Make your own damn plate!  No...I don't know what you're going to eat for lunch.  You're a grown up!  Figure it out! "

Mom...she helps out a lot, but she has her days of sitting and waiting for me to do things that she can do for herself.  I had to babysit her through a business call yesterday.  She had everything written down that she wanted to ask...still I had to get on the phone with her.  "I get nervous and I may forget something," she says.

Over the weekend, I left to go to Houston for my BFF's baby shower .  (Such a good excuse to leave! Thank you Ms. T.)  Before I leave on Saturday, Mom asks me what they are going to eat for dinner on Sunday?  "I have no idea...I won't be here."  And 2 grown-ass people will be!

I love them all dearly...but we all loose our patience sometimes.  I do spoil them all.  That's why they depend on me so much.  I'm sure they all have a long list of complaints about me.  I am not perfect by any means...but they have to write about it in their own blog.  This is MY release.  These are my 'Confessions.'

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Tuesday, September 13, 2011

Big Guns Blazing

I send and e-mail to my son's special education tracking teacher to let her know that basically, the programing in place at the high school IS NOT WORKING for him.  I do not feel he is getting the best education because of all of the distractions in the large environment that are weighing him down.  Red is so focused on the couples in the hallways making out, and the groups of friends hanging out, feeling lost and left out, that he is not focusing on learning.  He spends so much time being angry about not having any friends...or any real connections at school.  He ends up getting himself into trouble, acting out of his anger.  He makes it all bigger and bigger inside of his head and that doesn't leave much space for learning and actually getting the work done.

Granted...I don't think the combination of meds he's been taking over the past year have been exactly helpful either.  Getting it right is just a maddening process.  In the past week or so however, he seems like he's on the upswing of that.  He has not been as moody and depressed.  In fact, he has been GETTING UP ON HIS OWN, and ready ON TIME every single day!  He has been working hard on self-responsibility...even doing a little homework for God's sake!  (Although, he did make me sit there and baby-sit him the whole time he was doing it.) 

So we have this ARD (Admissions, Review, Dismissal it's called here in Texas) meeting as a result of my letting them know that we are ready to pull him out and send him to private school.  The strange thing is...once the meeting begins, they start it as if it was all their idea.  "We are having this meeting because of Red's behavior, which is not safe for him or other students..." yada, yada, yada.  Really???  So if I didn't send that e-mail saying that I am ready to pull him out would we be having this meeting???  

Oh and by the way...there are additional Special Education staff who have been brought into this meeting from Red's home school.  You see...Red is a transfer student, because supposedly his home school does not offer programming that will accommodate his needs.  Was I notified beforehand that additional staff would be there and that they are actually considering weather or not his needs can be met at his homeschool?  No...we just walked right into that, totally blindsided. 

Typically...a parent should be notified of the agenda of the ARD meeting ahead of time by one of the team members.  They expect to present you with all of this information that will effect your child's future and you are supposed to make a decision on the spot??  The committee asks parents to sign on the dotted line saying that you agree with what has transpired in the meeting...btw without actually seeing the written results of said meeting.  Don't sign unless you are totally comfortable with what has transpired.

In this case we did agree, because basically this was a meeting to call another meeting.  The district will be doing a VISIT meeting where we set out a roadmap for Red's future in education and in life.  They will also be doing a new Functional Behavior Assessment, where they will look at his current behaviors and come up with a new behavior plan based on his current needs.  They will also be doing some academic assessments to see where the gaps are in reading in math.  Oh and that additional Special Education staff that they brought in from the other school will be helping them with these them a different set of eyes and ears to look at Red with.  Why?  BECAUSE WHAT THEY HAVE BEEN DOING OVER THE PAST YEAR...HAS NOT BEEN WORKING.  WE ARE NOT GETTING ANY POSITIVE RESULTS.  HIS BEHAVIORS ARE NOT CHANGING, which is interfering with his education. 

I will admit that part of this sudden attention that Red is receiving is also because they have a new Special Education Lead at the high school.  She perused Red's files to see what the heck has been going on for the past year?  Why are they beating their heads against the wall and nothing is changing?  She looked at his last VISIT meeting that was done in 8th grade and saw that it wasn't very meaty and it certainly did not reflect who he is today.  Fresh blood can be a good thing.  Sometimes the status quo staff members get into the habit of doing the same thing over and over.  Well...we don't have a conventional fact, non of us do.  Each child is unique.  Status quo staff may not take into account new methods and training that someone fresh out of a Masters or Doctorate program may have in their arsenal.    

Wow! All of this...all of a sudden.  Whereas last year, they didn't want to do a new total assessment at his annual ARD because they didn't see where it would change any of his services, or programming  and they would be waisting so much time pulling him out of class.  YES...we were the uneducated dummies who went along with the OKIE DOKE!

Not only this...but heaven and earth were moved so that the top Transition Coordinator from the district could actually do his visit meeting before the week was out!  ARD meeting on Wednesday...VISIT meeting set up for Friday afternoon!  The VISIT meeting is a 3 hour plus meeting where we look at all aspects of his life and educational needs to get him to the point of relative independence.  We help him, set up a roadmap, setting goals and figuring out what HE needs to do to get to where he wants to be.  It's an awesome process.  We were so blessed to have the woman who is the best in the district to actually facilitate ours! 

We have another ARD meeting scheduled for the end of this month to go over all of the data that is being gathered and to look at their recommendations.  I'm not sure if we will come to an agreement or not,  but they definitely have our attention and apparently...we have theirs.  They have pulled out the Big Guns and that's not a bad thing. 

NOTE TO Special Needs PARENTS: Do not Agree to anything you are not totally comfortable with in an ARD meeting.  You do not have to sign anything without reading the full documentation. You may be surprised what is being left out of the documentation or what is changed, by human error or not.  Ask for a full copy of the documents and review them before you sign.  You can always call another meeting to sign, once you are comfortable with the plan you have in place.

We are often in an emotional state during these meetings.  Emotionality is not a valuable tool when you are making decisions that effect your child's future. are signing a legal document.  Don't sign anything you don't understand.  I always think of something after the meeting that I didn't address DURING the meeting, or think through completely.  Give your self some time to digest and discuss the the plan with your mate, or someone who has been through the process before. 

Also, it doesn't hurt to take an advocate with you to your ARD meeting to help you understand the decisions that you are making and to make sure that your rights are not being violated.  

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Monday, September 12, 2011

Guest Post Today!

Living on the Spectrum: The Connor Chronicles

Hey y'all!  I live in Texas if you don't know that already.  Today, I actually read a newsletter from one of my son's teachers that  had the word y'all in it...not proper English by any stretch,  but if you live in Texas long enough...

Anyhoo, (not proper English either) I am guest posting today over at The Connor Chronicles for Ms. Flannery who has a six-year old with Aspergers and severe ADHD.  Flannery is a hilarious writer.  I tried to be funny for her readers who expect that when they come to her blog...but I will never live up to her comedic talent.  

The post is titled Five Things I Wish I Had Known when my children were younger (that are now coming back to bite me in the ass!)  Something about posting on Flannery's blog left me feeling entitled to use a little Rated PG-13 language.  So if you don't like things a little spicy...oh well!

Please visit, read, laugh and enjoy!

For those of you just coming to visit...please come over and "LIKE" our interactive Facebook "Confessions" Asperger's Community where we come to whine, bitch and moan...I mean share information and experiences about this journey of raising our lovely Asperger's kids.

Sunday, September 11, 2011

Remembering 9/11

10 years ago today I had a 2 year-old toddler and a 5...nearly 6 year-old boy who had just started kindergarten.  On that fateful morning...I had been awakened in the middle of the night when little Blue crawled into my bed after having a bad dream.  We did the back and forth bed hopping for a while, so when the alarm went off to get Red to was hard to get up.  After I got him off to school,  I came back upstairs,  crawled back in to bed and passed out.  

I was in a deep sleep when I was abruptly awakened by the phone ringing.  It was my husband telling me to turn on the television. A plane had just hit the one of the towers of the World Trade Center.   I was dazed and confused, but I turned the television on.  I thought I had to be dreaming.  What happened?  How could a plane get that far off course and fly into the tower?  As I was trying to wake myself up enough to get clarity on what was going on.  The second tower was hit.  This was not a dream.  It was a nightmare. 

In the days that followed...there were lots of tears shed in this house and all over the country.  I mostly ached for all of the children who's parents went to work that morning just as they do everyday, or who got on one of those flights for a business trip, but they would not be coming home...ever.

Friday, September 9, 2011

Autism Sleeps

How I got roped in to having an autism sleep-over I do not know.  It's not his birthday, or any special occasion, but Blue is the most social Aspie I know.  He is constantly making plans with his friends, which I think is awesome.  He's smart enough and compassionate enough to be friends with others who have special needs, all of whom are very smart and have issues that are different.

So he and one of his friends decide they must have a sleep-over this weekend.  They have never done this before.  They hang out all the time but this will be a first.  I think the occasion is they both feel a little deprived of playtime since 7th grade started.  Blue has just been overwhelmed with the rigor and schedule of homework.  It is seriously infringing on his time to relax and "hang out" with his friends.

Since it is a holiday weekend, they schedule it for Sunday night.  Meanwhile on Saturday, Blue calls his friend Jay to ask him to come over.  Jay can't make it on Saturday, but would like to come on Sunday (the day that Twin1) is coming over.  They all know each other from elementary school.  So I say it's fine that Jay and Twin1 come over on the same evening. Jay does not plan on spending the night.  On Sunday, Twin2 decides he also wants to come over and spend the night.  Therefore, I end up with 3 boys instead of just the 1. Lucky me!!!

They all behave beautifully.  They play board games, and video games of course.  There is a little horsing around, but nothing too loud or rambunctious.  While on the computer, Blue is constantly monitoring weather.  Why? I do not know.  We haven't had rain in almost 3 months.  He finds that there is a fire warning in our city, due to the extreme heat and drought.  When they notice the fire warnings, they all come downstairs.

"There's a fire warning...we're all going to die."
"Are we going to burn up?"
"We have to search the area for fires!"
 I allow them to go out to search for fires.  I give them a flash light and tell them to stay within a 1 block radius in which I know there are no fires.
Minutes later they come back...there is no immediate danger they all report.  Blue tries really hard to get all nervous and anxious.  I respectfully ask him to just try to enjoy his friends instead of worrying.  He obliges.

Later, Jay has a close call where he almost has to leave the party early.  He is afraid to use our bathroom because our fans are too loud.  He has this "thing" with fans right now.  Note...actually running the fan in our bathrooms is optional.  You can just turn on the light.  That is not an option for him, however.  I try putting a pillow over one of the fans to mute the sound...not good enough.  As I am calling his mom to help me solve the problem...Blue solves it for me.  He goes into the bathroom with Jay to make sure everything is o.k.  while he is using it!  This is huge!  He won't let any of us near the bathroom when he's using it.  And he would never come into the bathroom with one of us.  Wow! What he won't do for his friends!

Oh...and that whole sleeping issue he has...where he has a fit if he has to sleep with anyone else in the room...out the window!  He totally forgot about that when he slept with all of the boys in his room.  He did wear his ear plugs --just in case someone snored, but that was it!  Remember our Bed-Hopping sleeping disaster on our family vacation.  Blue would rather sleep on the floor in the bathroom, than sleep next to his brother.

The next morning...the boys wake up.  I am in my room, in my bed, on my laptop when they ALL COME MARCHING INTO MY ROOM. "Good morning.  What's for breakfast?"  HELLO!!! Boundaries???  Why are there 12 year old boys in my bedroom?  How about Blue knocks on the door...waits for me to come and answer before they all come marching in???  It was just too funny.

I must say...I truly enjoyed having the boys in my home.  It was so good seeing them all enjoy such a typical, teenage-boy activity, with laughter and a sense of comfort.  No one was teased, taunted or made fun of.  They just had a pure good time and I received so much joy from watching them.

Wednesday, September 7, 2011

Dear God...Seriously???

This was my status on Facebook after leaving the high school for my 2nd meeting in less than a week with the School Resource Officer, Red and his Special Education Teacher this morning.  We spend the first 45 minutes of school clearing up Red's misconceptions, paranoia and misinterpretation of previous statements and events.  It's that famous spinning, looping thing that he does in his head, where he jumbles things all around, turning his own thoughts, feelings and fears into actual events and statements made by other people.  Thereby, taking up most of the capacity in his brain for learning and getting the actual education that he is attending school for in the first place.  Not only that, he internalizes and makes things bigger than they actually are. This eventually turns in to anger, outbursts and then finally, he settles into deeper depression and a good ol dose self-loathing.

I already spent a good portion of my day a few days prior with, said officer,  where he explained to me in great detail,  how he handles situations with special needs kids like Red.  He is there to assist when one of these gigantic boys is getting out of control and freaking out other students or teachers.  His role is to "serve and protect" serve --by talking to them, helping them to calm down.  To protect --by removing them from a situation where they could possibly hurt themselves or others).  He does not work for the school district and they do not tell him what to do.  He handles things based on the law and his deescalation training.

Red has it in his mind that the Officer is on campus to, "...throw me in jail and beat me like they do on Cops."  On the other side of the coin, he has had two different friends hand-cuffed at school in the past.  One of them was taken away.  I don't know where this child was taken or what actually happened to him.  I do know that in both of these cases the boys actually struck a teacher, whether accidentally or not.  Of course Red has NEVER done anything violent against another person in school  But in his mind, his friend was handcuffed and taken to jail...never to be seen or heard from again.   So the same thing could happen to him at any given moment. Keep in mind that he is not really adding up 2 plus to to make 4...he is not connecting all the dots.  Hmm so his friend disappeared.  Where did he go?  Is he in juvee? Another school?  He doesn't know.  Maybe that is why he's a little paranoid?  

So both of us leave the meeting this morning feeling a little better...not because of the school or the special education staff, but because of the officer himself.   He ran this little impromptu meeting...  assuring Red that he and the staff are there to help him.  They are there for him...not against him.  They want him to be successful, not to fail.

This is great...I mean totally Cumbaya!  However, I am still reeling at the thought that I actually have to have such a meeting.  I mean who ever thought I would spend so much time having to talk to school police for any reason???  Do I really want my son in a public school where this has to be one of his worries on top of all of the mental and social issues that he already has?  Where every time he pulls up to the school and looks through the school bus window...the first thing he notices is a police car?  And then he comes home and releases all of his pent up anger and frustration by throwing up on all of us?

Well...I have an ARD meeting tomorrow to talk about this among many other concerns that I have about my son's education.  Is there any wonder I feel a tad bit overwhelmed??? I mean come on...seriously?

Pleasant surprise coming soon...I will be guest posting over at Flannery Sullivan's The Connor Chronicles very soon!  I will let you know of soon as the post is up. 

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Friday, September 2, 2011

Roller Coaster of Moods

He comes home from school cursing,  "I had to talk to an F-ing officer today!  I don't have any money for an F-ing ticket! I am NOT a BAD Person! I come from a good family!  We don't have any money to pay any damn tickets!"

I kindly ask him to remove himself from my room until he can have a civilized, respectful conversation.  He is spinning things and what he is saying does not add up.  He is not making much sense.  It's crazy talk.  I can't figure out exactly what happened.  I ask him to leave my room until he calms down. He refuses. "But I NEED TO TALK to you!"
"I will be glad to talk to you once you have calmed down."  After much coaxing...and by coaxing I mean,  "If you don't leave my room now...I'm going to start swinging this belt!  If you happen to be in the way of it's landing...then so be it!"
This boy is twice my size...I can not physically remove him, but he has to go!  I can see that he is not completely out of control...just angry.

An hour later we have a more lucid conversation.  It's beginning to sound like it was a good conversation with the Campus Resource Officer.   The officer was just walking through the class saying hello to one of the teachers.  He is a very friendly guy.  Red walked in to the class, saw him, and they start talking.  It was kind of a mentoring session...and yes, they do talk about the incident with the friend in the hallway the week before.  He explains the law about following people, and making them feel "uncomfortable" and what the results of that can be.  They go on talking for over an hour about a variety of subjects.

However, by the time he gets home, he has it turned it all around in his mind.  His irrational fear of being arrested like they do on "Cops", pepper spray, beating the suspect, etc.  settles in to his mind.  What is coming out of his mouth does not have anything to do with what actually happened.

Lucky for me, I have leave to go leave to go to Open House at Blue's school. When I come into Red's room before bedtime we have this very lucid conversation where he tells me, that everyone at the high school is just trying to do their job.  "You don't understand mom.  They are all trying to help me.  I have to take responsibility for my actions.  I am a good person.  I have a good heart and I come from a good family.  There are no criminals in our family.  No one is in jail...and I won't be either."

He goes on to say, "Mrs. Blank (his special ed. teacher) helps me a lot!  I can't leave to go to a private school.  I really need her to help me.  No one else is going to help me like she does. I can't leave all of my friends there.  I'm starting to make friends there.  I'm not kidding Mom!  I am not going to that private school!"  He takes it a step further,  and has the same basic conversation with his dad the following morning before school.  NOTE: In his "responsible" state of mind he actually gets up ON TIME..on HIS OWN, and is ready BEFORE the bus comes.  So it is possible!

20 minutes later...he arrives at school.  Suddenly, the irrationality reappears.  He walks into the classroom where his loving, helpful, teacher is and starts, "Why the HECK DID YOU MAKE ME TALK TO THAT OFFICER YESTERDAY!?"  He goes on and on and on all day long...refusing to do any work.  Mind you...she had nothing to do with his talking to the officer.

By the time he gets home yesterday, "Mrs. Blank is a liar! She's the worst person I've ever met! I can't go to that freakin' school anymore! Mrs. Blank just wants me to go to jail!  That's all she ever talks about.  She lies to you!  She talks badly about you! And she lies to me!"

Whew!  And we're just in the second week of school.  There is no school for Red this morning.  Instead, we spend the morning in the Psychiatrist office getting his meds adjusted...again.  I think I may need to get mine adjusted.  I just want to zone out and not feel every one of these crazy emotions that he goes through.  If I feel this bad...I can only imagine what he is actually going through.

My Facebook status last night, "Forget the margarita...maybe I just just have a shot!" And trust me...I'm a lightweight.

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Thursday, September 1, 2011

School Failing?

The question that has been floating through my mind for the past few days is this: Is my son failing at school or is the school failing my son?

He's not your average -cookie cutter kid.  He is a puzzle with ever changing pieces...what fits one day may not fit the next.  Yet, he is in a school that is pretty much designed for cookies...plain sugar cookies with the round shape that all fit together nicely in the package.  The world will never revolve around him...he will have to adapt to the world.  The difference is...once he is an adult, HE can decide where he wants to make his place in the world.

If he is uncomfortable being around hundreds of people at one time, he can find a job in a small company. Or perhaps he can work for himself.  If he doesn't want to or is unable to go to a large university, he can choose a small technical school, or community college, or art school.  He can take classes online.  He does not have to choose to be in a large environment with multiple distractions that leave him in sensory overload.  Right now, that is what he is being forced to do.

So we're at the beginning of the school year and we are back to the same issues that we were having last year.  He has already been in trouble for yelling in the hallways at another student.  He is trying to befriend someone who does not want to be bothered.  He is being ignored...he gets angry.  He yells "You don't have to run away from me.  I'm not a monster." It is not in his thought process that he is making the student uncomfortable.  I just want to be a friend.  He has no concept that it's kind of creepy.  He does not naturally read or have a concept of other peoples feelings.   This is called mind-blindness, an Aspergers trait.

He acts impulsively without thought of the results of his actions.  Do you really think that yelling and bringing negative attention to yourself is going to bring you what you want...more friends?  Or will that make people have "weird thoughts" about you?  Will it bring you a reputation of an angry person that people should stay away from? You have to walk through this thought process with him after the damage has already been done.

The thing is...the school is aware of this behavior issue, he did this a couple of times last year.  Yet, they allow him in the hallways, unsupervised during the first week.  I guess they were giving him the benefit of the doubt.  Obviously, he didn't get the memo.  He didn't understand that he was being given an opportunity to make the right choices.  He acted on impulse, out of desperation and anger. He did not past the test.  He did not gain a friend.  What he got instead was an Administrative Directive...a black and white, concrete direction that says, "THIS IS NOT APPROPRIATE BEHAVIOR.  THIS IS NOT ALLOWED!  YOU CAN NOT BEHAVE IN THIS MANNER.  If YOU DO THERE WILL BE NEGATIVE CONSEQUENCES."  If you go out into the world and behave this will not fair well.  You can not yell at your peers.  You are intimidating them! THIS IS WRONG!

Of the same time what he does not realize is that the school has to COVER THEIR ASS!  For liability purposes,  they have to have a documented trail that says, they are doing something about this behavior.  Although, it was their decision to put him out there...hoping that he would swim and not sink.  You see, the school is designed for the masses, for the cookies that are all the same shape and size.  Who march in a row...doing what they are told...doing what is expected.  It is not really designed for those who don't fit the mold.  I can be upset about that...and intense desire to pull him out of the fire before he gets burned.  The thing is...the world is not designed that way either.

He is swimming upstream...against the tide.  Except, public school is not really a river or a's more like a vast ocean.  He is a big fish on the outside, but on the inside...he's a guppy.  He does not naturally have what it takes to make it.  He needs a great deal of guidance and supervision.   He should not be put out there to sink or swim without having some intense swimming lessons.  Even then, there are no guarantees when you are dealing with mental illness (bi-polar NOS) Aspergers and impulsive behavior, that he will be willing and able to do the right thing.

He does have an intensive support system at this public school.  He has a special education program and teacher who are working very hard to support him.  Do I always agree with the decisions they make?  No...I do not.  The thing is...he is nearly 16 years old, ultimately HE needs to make some good decisions and be responsible.  There will not always be someone there to coddle him and hold his hand.   His head is thick!  It takes a lot to get through to him and then he has all of these lovely road blocks and filters that cloud his judgement.  Ultimately, that's what we are all trying to teach him independence and self-responsibility.  It's a painful process.  It's going to take a lot of work from all, us and most importantly from him.

This is an ongoing saga that I can not complete in one writing session.  One thing I know for that there will be more episodes to follow in this mini-series called life with Aspergers.

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