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Monday, January 31, 2011

Duck Duck Goose

It's an "early release" day in our school district. "A teacher's treasure is a parent's miserable afternoon."  This was what I tried to post on Facebook that morning. For some reason the post didn't go through.  I took it as a sign from God.

They arrive within minutes of each other around 1:30 p.m.  Blue comes in first and quickly reminds me of our tradition to go out to lunch on early release days.  I hadn't even realized they were getting out early until early that morning.  I hadn't planned on going out.  Red and I had hardly been getting along for days, and I really did not want to take him anywhere.

I call their dad and ask him if he can break away from work for an hour to meet us for lunch.  I really did not want to be out in public --alone, with both of them with all of the fighting and discontent that we have been dealing with lately. Thankfully, he agrees to meet us.  I let him choose the place because the boys were debating about it.  Everyone has their reasons for wanting this place and hating that place.

"I threw up the last time we went there!"
   
"That place has hot girls that wait on you!"

"That place doesn't have good cheeseburgers."

"I don't want to see a bunch of hot girls! That's embarrassing!" 

We have a nice lunch together.  Both of the boys are having a real love affair with their dad right now, which is more than alright with me.  Dad has been taking Red to school for the past week.  He gets up and gets ready for school with no argument -and of course, their is no stalling and arguing once they arrive. He and his dad have even had a "guys day out" one Saturday.  This is huge!

Blue has always been majorly impressed with his father.  He wants to be just like him in so many ways. He definitely doesn't want his dad to be upset with him.

Over lunch, they all enjoy talking "geek" together.  I'm sitting there trying my best not to zone out of the geek talk.  They all love computers and all things electronic.  The boys naturally gravitate towards the same things as their father  --science, history, cars and action movies.  Blue, however is a little more well rounded.  He not only has his father's science and math brain.   He also has my arts and writing brain.  Red -now I'm not sure whose brain he has!  He marches to his own beat.

The bottom line is --they are boys and I am so glad that they have their father as a positive male role model.  He is becoming even more important to them as they grow closer to becoming young men. And thank God for that! Hopefully,  this means I can run away from home more often! 

The restaurant where we meet for lunch is located near a park that the boys and I used to go to frequently.  The park is right behind a little shopping area called the Arboretum here in Austin.  We go there to have lunch or ice cream, hang out at the book store and the game store.  This is usually followed by a walk on the hiking trail down to the pond where we feed the ducks.  The last several times Blue and I have done this, Red has optioned out.  He complains and takes the joy out of it, so we usually let him stay home.

On this day however, he is already with us so when Blue asks, "Can we go down the trail and see the ducks?" Red strongly objects. "I don't want to go to that park! I want to go home!"

"Why are you in such a hurry to get home? What to you have to do?" I ask. 

"I don't know.  I just don't want to go to that park! I hate that park!" 

Well...these days he HATES EVERYTHING, especially anything that is not his idea! 

"We're here.  You wanted to come with us today, and WE are going to the park.  If you want to stay in the car, you are welcome to do that," I say matter-of-factly.

He continues to object.  I allow Blue to take the trail down and we meet him in the car at the bottom, near the pond so that Red can stay in the car if he so chooses.  That way he will be close enough for me to keep an eye on in case he changes his mind. 

It is a gorgeous spring-like, January day.  The sun is shining the temperature is hovering around 74 degrees.  How could we possibly pass up the chance to be out enjoying nature on a day like this?  Next week it could be freezing, raining or maybe even snowing!

Blue and I walk leisurely alongside the pond observing the ducks swimming in patterns.  We quack in attempt to get them to come closer to us, though we have nothing to feed them today.  I watch parents with their toddlers and reminisce on the days when my boys were young, sweet and innocent like the 3 year old boy who is running away from his mother.

"You see that. The little girl is sticking close to her mommy," I say aloud.

"What are you trying to say mom? Girls are better than boys?" asks Blue.

"No...I'm just saying boys are impulsive.  They don't think about the repercussions of running away from their mother near a pond." Something that he and his brother used to do all the time.

We notice these two loud mouth geese sitting over near a picnic table.  They are squawking ostentatiously as if they are trying to tell us something.  Perhaps, "Don't even think about coming to sit at this table!" Or maybe, "Don't you get near my babies!"

As we start to mosey on back towards the car, they appear to be following us.  We stop and turn to look at them from up on the grassy area.  At first we think they are going to get in the water.   Instead, they grab a quick drink to moisten their vocal cords so they can continue to squawk.  Then they turn and follow us up onto the grass.  They begin to walk faster and faster, talking to us the whole time. We keep walking.  Blue of course is getting a little nervous.

"Mom, maybe we should hurry.  They might bite us."

"I think they're trying to tell us something Blue.  Maybe they want to come home with us. Or maybe, they figure if Red won't come and see us...we will go see him!"

At this point we are pretty close to the street.  From the car, Red sees them following us and gets out of the car.


They thought his white shoe was a loaf of bread! 



This is the boy who absolutely, positively...
 did not want to go to the park! 


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Friday, January 28, 2011

Sayanara Mr. Nice Guy


I am sitting in the car waiting for Red to mosey on out to the car to get to school.  These days I have too much nervous energy.  I can't sit idol.  I have to be electronically stimulated in some form or fashion -either by my android phone, my kindle or my laptop.  Yes...I've become one of those people  This is a form of escape from my reality.  Sadly, it's also a social outlet for a woman who spends a lot of time with children, not adults.

So while I'm waiting for Red (it seems like I spend my life doing that)  I grab my phone and check my Facebook page, then I read an inspirational blog or two.  I love to read Diary of a Mom in the morning while I'm waiting.  Jess -the author of the blog is a fresh cup of inspiration in the morning.  Lord knows...I need inspiration!  She talks about her girls, one of them has autism.  I always wonder what my life would be like if I had girls.  This gives me a small taste of that world.  It's not necessarily better, but different.

Back to my reality...this boy gets into my car and tries unsuccessfully to grab my phone. "Stop looking at that phone mom! You're obsessed with that phone!"

"Have you lost your mind?" I retort.  "Who do you think you're talking too?" Aspergers or not -I will not be blatantly disrespected. He's not in the middle of a meltdown.  He's in the middle of being a disrespectful teenager!

"Well...why are you always looking at that stupid phone?"
"Why are you always late? Why do I have to sit here waiting for twenty-minutes every morning?  If I choose to spend my time reading something while I wait for you, that is my choice."

He goes on with a couple of other ugly, personal insults.  One of them I about why I eat "disgusting guacamole."  I refuse to engage him in this nonsensical conversation.  I just drive, trying desperately to ignore him.  When we arrive at school, we do the usual dance.  He refuses to get out of the car, but this time he actually starts cursing at the people behind us in the car line.  (They don't hear him of course, but I do.)  Oops...that's my cue.

I get out of the car and enter the building so that he no longer has an audience.  A few minutes later he gets out.  He comes in...I go out.  I return to my car...only this time he follows me. "Why are you embarrassing me mom?"

"You're embarrassing yourself. Go to class," I say calmly as I continue walking.  I get in the car and lock the door behind me.  I leave...burning rubber behind me.

At 4:30 the storm blows back in and continues basically right where he left off.  He unloads the frustration of his day -of his life, on me.  Everything is exaggerated.  Everything is somehow my fault or my problem that I need to fix.

The source of most of his fury -the main reason we said "sayanara to Mr. Nice guy," is the fact that he "broke up" with his best friend over the weekend.  His friend also has "issues" and when he is feeling down he has a tendency to be rather ugly to Red.  That's not to say that Red did not play a role in whatever they fell out about.  You put two kids together who lack appropriate social skills, and they both have disabilities -everything isn't going to be peachy all of the time.

I listen.  I offer advice.  I console.  It all falls on deaf ears.  He talks calmly.  He rages.  He yells. He rants from one subject to the next -really just having a conversation with himself, but I am supposed to listen attentively.  If I give a suggestion he talks right over it.  All of that is fine --for the first hour and a half!

I am so glad that I scheduled my day so that I can go to a 6:30 p.m. yoga class.  I want out!  I want a glass of wine!  But I can't have wine and then go to yoga -I'd fall asleep during savasana (meditation).  Around 5:30 I start calling my husband.  "Are you on your way? Where are you? How long before you can get here?"

My mom finally felt sorry for me and asked him to come into to her room and talk to her for a while.  She's been trying really hard to stay out the middle of our madness, but he was relentless.  Thank you Mom!

My husband walks in the door -I run out!  I almost drive right past the gym to my favorite margarita joint.  Determined to keep myself on the list, I pull into the gym.  I have not worked out this year!  It was good to be there.  I try my best to breathe and be present.

"Breathe out all of the stress of the day deep take deep, cleansing breaths," says the yoga instructor.

You have no idea! I think to myself.  

When I left the house, my husband said, "Take your time."  When I leave the gym I thought -hmm he said take my time.  Should I go to TJMaxx for shopping therapy?  Somehow my car drove itself to Z-Tejas where I had a deep cleansing margarita all by myself.  I felt a little weird walking in alone, but it's not like I haven't done it before.  So much so -the waitresses all know me by name and favorite drink.

I sat at the table nursing one drink,  playing scrabble on my Kindle.  I had a party all by myself -other than the occasional visit from my favorite waitress, Raquel -who has become a friend.

Yoga was good therapy...but margarita therapy was even better.

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Tuesday, January 25, 2011

5 Good Days

"Why does school have to start so early in the morning?" It should start at like noon! Who's idea was this anyway? Someone who just wants to torture kids and make our lives miserable?"
"If school didn't start until noon,  kids would be getting out of school in the dark," says the mother.
"No...we should still get out at the same time."
"How would you have enough time to learn everything you need to know?"
"Just cut out lunch and go straight through," says the 15 year-old boy.

(my Facebook Status one day last week)


I pick up Red from school early for a psychotherapy appointment.  When he approaches the car, he is not wearing his ordinary frown.  This is a good sign.


"How was day?" I ask.
"It was o.k."
"Did you have lunch with a PAL today?" (PALS are student mentors)
"No. The PALS weren't on campus today."
"So how was lunch?"
"I was lonely."

We stop at the Mc Donald's drive-thru.  We are waiting for them to get our order right.  Quarter Pounder with cheese -plain and dry, combo meal with Sprite for the drink (for Red).  A small order of fries and a Coke (for me).  They hand us a bag with both of the fry orders upside down so that both orders of fries fall into the bottom of the bag.  What is this rocket science?

While we wait:

"Mom, do you think I'm sad about not having friends 50 percent of the time or 100 percent of the time?" he asks.
"I would say you complain about it pretty close to 100 percent of the time."
"Well you know -actually I had a good day today.  I talked to a lot of people about the movie I made and people were interested.  I gave out a couple of copies of the DVD and people wanted to watch it when they go home."
"Wow! That's awsome!"
"You know, I really do have more friends than I say I do. I was just walking down the hall with Ms. S (let's call her) and people were speaking to me.  She reminded me that a lot of people say hello to me and that I really do have more friends than I tell you about."
"Well -why to you come home everyday complaining to me."
"I guess I just don't want you to know everything. I act different around you -at home than I do at school.  I'm usually pretty happy at school most of the time.  I mean -I get sad sometimes, like because I don't have a girlfriend and I really want one."

I'm sitting there just flabbergasted.

We go to his therapy appointment.  He is lucid, talkative, sitting up straight, using gestures and appropriate facial expressions, and even the occasional smile.  He talks about the movie he made with his  new camcorder.

"So how is school going?" asks doctor Stein (lets call him).
"Actually pretty good," Red replies.
"I talked to a lot of people today.  I actually have more friends than I thought I did."

They talk for a while.  The conversation is so positive it's hard to believe this is actually my son.

"Dr. Stein, I'm a little confused," I interject.  "Every morning for two weeks we have been fighting tooth and nail, I mean yelling, screaming, refusing to go to school.  He's only been on time once in the past two weeks. He comes home everyday frowning, telling me how horrible his life at school is.  He uses that as the reason that he doesn't want to get out of bed and go to school on time."

"How about that Red? Why are you giving your mom such a hard time?" the doctor asks.
"Well...I'm just tired in the morning."
"The funny thing about that is that he's the first one up on weekends and while on we were on Christmas break," I say.
"It sounds like this is about motivation...not about being tired if you have no trouble getting up on the weekends," he says to Red.  "
"Also...on weekends and during vacation their is less stress," he says while looking at me.

"Red -your mom also says that you come home and complain.  You're picking a fight every morning so that you can be late.  So what's up?"

Red looks around for a bunch of excuses.  None of them really add up.  He tries to blame me for "yelling and being mean."  The doctor broke down that explanation by asking him, "Is she yelling or just asking you to do something you don't want to do?"

Red admitted that to be true.

"I don't know why I treat my mom so bad.  She's not really mean.  I just act different with her because I've been with her my whole life." In other words...I am most comfortable with her.  "I really depend on my mom a lot. She does a lot of things for me."

"So why do you think you treat her the worse when you need her the most?" the doctor asked.

He promised to try to treat me better and for the next 5 days...he did.

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Monday, January 24, 2011

Autisms Voice / Hanging Out

Autism's Voice


It's Saturday morning and Blue has a meeting with his ex-social skills teacher from elementary school.  I am so proud that she has invited him to present again at the Teachers Continuous Improvement Conference in our school district.  He is becoming the voice of autism in the district, which makes me an exceptionally proud mama.  This is the second year he has presented at this conference.  Last year's presentation was "What You Can Do to Help a Student with Autism in the Classroom."  This year he will present on "ARD Meetings -Why It's Important for Students to Particpate".

Last year was standing room only in his presentation.  Can you imagine? An opportunity to tell teachers what they do to get on your nerves and then teach them how to fix it.  Only better -he is helping more than himself.  He is helping those with autism who can't speak for themselves -whose communication skills are not quite as good as Blue's.

I say he's becoming the voice of autism in the district because he is also doing an introductory video at his middle school for students in 5th grade who will need social skills support when they come to middle school next year.  On video -he will take them on a tour of the school so that they will become a little familiar with the campus prior to their first official visit.

He will also be doing another video for the school Psychologist (LSSP) at his middle school that will also be used at the Teachers Training conference this year.  This presentation will be about behavioral issues and choices.

The fact that he is being chosen to represent a positive image and voice for autism is a huge honor and says so much about his character.  He's come a long way baby!  His future is so bright -it burns my eyes.


Hanging Out

The prep meeting that Blue attended on Saturday included a friend that he has known since pre-school.  The two of them have grown and matured so much since the days of their Blues Clues and Toy Story obsessions.  After their meeting I took them out to lunch followed by a playdate at our house. I suppose since the two of them are now 12 years-old (Blue will be in 2 weeks) they would be mortified by my using the term playdate.  I suppose it's more like -hanging out when you're a pre-teen.

Anyway, they spent several hours watching funny You-tube videos, playing games on the Wii and playing outside.  While they were playing in Blue's room, the two of them hatched a plan to go see "Tron" at the movie theatre, even though Blue has already seen it twice. He had all of the movie times in the local area committed to memory by the time he shared his plan with me.  He was so excited and all spun up.  They had to go!  I mean -why not?

"Can we go? Can we go? Can you take us? Can Dad take us? Can you drop us off?"

I'm not quite sure I'm ready to drop him off at the movies. I didn't make any promises one way or the other.  I said I'd think about it and talk to his dad.  The two of them go over to his friends house where they play for a few more hours.  During which time, I am hoping he'll forget about the movies or be too tired to want to go anymore.  (A girl can dream...)

Around 6 p.m. he calls, "So Mom are we going? Can you take me? Can his mom take us? There's an 8 p.m. showing."

"I think you've already had a pretty full day.  Why don't we wait until tomorrow afternoon?" I say.
"Why would we do that? Why can't you take me? You aren't doing anything."

I had my reasons.  I didn't really feel like I needed to explain them all to him.  Sometimes the answer is just no.  You had a full-day with your friends.  Why can't that be enough?  I took you guys to lunch.  You spent 6 hours playing together.  Let's call it a day -and a good day at that.

I do remember scheming and plotting like this with my friends when I was a kid.  Enough -was never enough.  I never wanted the party to be over.  At the same time, I had to learn to accept the answer -no.  

He comes home from his friend's house and gives me the evil eye.  He comes into my room and takes   Harry -our dog.  "Come on Harry.  Let's get out of here."  I guess I don't deserve any company.  He is really mad at me.  That's o.k. I can take it.

He asks my mom to help him make his dinner.  I continue hiding out in my room -alone.

By bedtime he comes in, apologizes and gives me a hug good night.  All is forgiven at least for the night.

You bet your bottom dollar -he held me to my word.  He saw "Tron" for the 3rd time at the cost of $10.25 for a matinee showing because it's in 3D.  What a rip! The things we'll do for our children.  BTW- No I did not drop them off.  I hung out in and around the theater until the movie was over. They had a great time.  But of course, the party did not end there.

"Mom can he come over and hang out at our house for a while?"






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Wednesday, January 19, 2011

Spent



Friday morning was like every other school morning.  There was yelling and screaming involved and by the time we finally made it to the high-school campus, I was physically and emotionally spent.  I walk inside and ask to speak with the school Psychologist (Ms. W- lets call her).  I wanted to share with her what I had observed the day before in the cafeteria when I skulked around like a private detective, watching my son from across the room.

"I watched him pacing back and forth looking totally lost.  He spoke to some peers and apparently they blew him off.  He just looked -disconnected, lonely and out of place.  It broke my heart to watch."

As I sat in her office, I suddenly found myself in tears.  The tears were a combination of stress and exhaustion from the week with that I had been through him.  I try to stay pretty calm and centered,  but it weighs on me heavily.  At the same time, I was literally feeling the anguish that he is going through as if it were my own.

Ms. W-  empathized with the pain that he must be feeling and that I feel as his mother.  She assures me that he does have alternatives to going down to the cafeteria, but for whatever reason, he chooses not to go with those alternatives the majority of the time.  Apparently, there are a few students who regularly ask him to hang out at lunch and he blows them off in order to go to hang out with the "normal" kids.   He is fixated on a friend whom he has known for most of his life, even though she doesn't really want to be bothered.  He also has a mentor group that he can sit with at lunch.  He usually doesn't. 


Mrs. W also reminds me of how far he has come in a years time.  "He is going to all regular classes every day and once education starts -he is fully engaged," she says.  When he is in a regular ed. classroom, there is no frowning, no acting out.  He is doing his work and even participates in group activities.  She suggests that I peek in on him in one of his classes to observe that he is not as miserable as he says.

"The hallways, and lunchtime are difficult for him, but he is actively participating in his education in the classroom and doing well," she said.

I manage to dry my tears.  I remind myself that I can only do so much for him and the same goes for the professionals that work with him.  We can open doors and encourage him to walk through to the other side, but he has to do the leg work.  We can't pick him up and carry him through.  They can teach him social skills...but he has to decide weather or not to use them.

What's that saying -you can lead a horse to water...  No -I've got a better one -you can take a girl to a bar but she can still order a Coke and be a total party pooper!

He complains about his life, while refusing to do the work involved to change it.  A part of it is fear.  We can attribute some of it to delays in his thought process, his tendency to get stuck. So as the adults and professionals in his life we have just keep trying -keep repeating and hope that eventually he will learn some of what we are trying to teach.  After he learns it, we have to pray that he will actually use the skills.

I finally found a social skills high-school group (outside of school) that he will start attending in a couple of weeks.  I am hopeful that it will help him.  I will continue to monitor what is being done at school  (social skill-wise) and try to reinforce it at home.  I asked Ms. W -to continue to try to redirect him during his lunch period, to help him to find other things to do instead of putting himself through the agony of the cafeteria.

I did peek in on him in class before I left.  He was working.  There was no frown, no sadness -just a normal boy trying his best to be just that.


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Saturday, January 15, 2011

Given Up

Given Up -Linkin Park
(One of Red's favorite songs by his favorite band)

Stuck in my head again
Feels like I'll never leave this place
There's no escape
I'm my own worst enemy 
I've given up
I'm sick of feeling
Is there nothing you can say
Take this all away
I'm suffocating
Tell me what the f- is wrong with me!
I don't know what to take
Thought I was focused but I'm scared
I'm not prepared
I hyperventilate
Looking for help somehow somewhere
And no one cares
I'm my own worst enemy

On Thursday morning we had a therapy appointment with the Pediatric Psychiatrist.  We see her about once a month to evaluate medications, to see how they are working, or not working, to determine if we need to make tweaks or adjustments.

He doesn't particularly care for this doctor because she tells him the naked truth.  The truth can be painful.  She thinks that his behavior especially with me, borders on harassment and abuse.  She once told him if he didn't make some changes that she may have to take him out of this house for a while.  He definitely did not want to hear that.

He's sitting there in her office,  his head in his hands, looking down at the ground, frowning -like he's being tortured.  I tell her about the issues we've been having lately. The fighting every morning to get him out of bed and to school.  He tells her how miserable he is at school because he doesn't have any friends.  He says that he's so tired, that he's nearly falling asleep in classes.  He goes on to say that his fatigue is the reason he can't get up in the morning.

We call him on the fact that he got up easily during the break.  At the same time, she realizes that during school he is much more stressed.  The bottom line is that she increased his Focalin by 10 mg to help with his cognition during the school day.  I would say that the session was somewhat productive not fun, arduous -but worthwhile.

I gave him a little break after the appointment.  I drop him off at Best Buy -while I run into Nordstrom Rack to look at shoes for a few minutes.  Afterward, we grab a couple of burgers for lunch.  Finally, I take him to get a haircut.  The day before, he came in home from school angry -starring in the mirror.

"I'm ugly! Look at my eyes! Look at my hair!  I need a haircut.  That's why girls don't like me -that and the fact that all the girls at my school are white and I'm black.  They don't like me because I'm black!"

"Son -no one in our family is ugly.  You are very attractive.  Try smiling and see how your eyes light up and you look so much better," I say as he's staring in the mirror.

"I can't smile."

He does look ten times better with his haircut and his face shaved.  He grows these soft little baby hairs on his face.  When they are shaved it really does help light up his face.  When he stands up straight and tall and holds his head up.  He really is quite handsome.

I tell him, "Honey, you have to love yourself before you can expect anyone else to love you.  You have to believe that you're handsome for other people to feel that."  Again, I remind him that all of the men in our family are black, handsome and smart.  He is no different.  What's more -they are loved by women and his time will come.  "When you mature and start loving yourself...you will find the right girl."

I may as well be speaking French.  He doesn't get it.  He doesn't believe it.  The problem couldn't be something that he could fix.  It has to be everyone else's problem.

When we arrive at school it is his lunch time.  I encourage him to go up to his social skills classroom since he has already eaten lunch.  He opts to go to the cafeteria to "hang out" instead.   He did stand with his head erect and took the frown off of his face -no smile, but no frown.

I am worried about him wandering aimlessly through the cafeteria with no special education staff or student mentors on alert.  Instinctively, I decide to skulk around behind him to observe his behavior.  I want to see for myself if he is actually having a good time at school, while making me think that he is miserable.  I also wondered if he was acting "weird" and freaking people out.

From across the room I watch.  He paces back and forth -never sitting down.  He exchanges a few words with someone sitting at a table.  I couldn't see who.  He paces around some more -looking completely lost and out of place.  It broke my heart.


I am instantly taken back to a high school experience of my own.  After leaving middle school, where I had a wonderful circle of friends and knew just about everyone, I went into a high school where I hardly knew anyone.  I walked around feeling lost, lonely and out of place.  The few people I knew, I could never find them.  I just stood around, trying not to look conspicuous -praying that others didn't know how lost and pathetic I was feeling.  I came home everyday and cried and begged my mother to transfer me to another school.  A week later -I enrolled at another high school that my best friend attended.  I didn't know many people, but I at least I had one person in my corner.

The pain that Red has been feeling suddenly hit me like a ton of bricks.  He is just as lost as I was for that one week -only it keeps on going, and going, like the Energizer bunny.  Not only that -but he has no clue what to do about it.  He is trying desperately to cling to a friendship with a girl that he has known since kindergarten.  The problem is -she has a boyfriend and they don't want to be bothered with a third wheel, especially a third wheel who is socially clueless.

There are other boys in his social skills class who reach out to him, but for whatever reason he rejects that friendship.  The only person he really hangs with -is another boy, who also has special needs and is even more socially clueless than he is.  However -he knew this boy last year in middle school, so there is a sense of familiarity -a comfort zone.  He hangs out with him,  although deep inside he's feeling like this isn't good enough. Why can't I walk the hallways with a group of friends laughing? Why can't I have a special girl who likes me just the way I am?

Here enlies the anger that he comes home with everyday.  This is why he HATES going to school.  In the hallways he sees kids walking in clumps, talking and laughing -being silly while he walks alone.  In corners he sees couples hugging and sitting on each others laps, kissing and smiling at each other.  He wants it too.  He wants it desperately -but he has NO IDEA how to go about getting it.

He is trapped behind the glass doors of his own mind.  In some ways...he is his "own worst enemy".

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Thursday, January 13, 2011

Incentive


I knew the day would come where Red would absolutely refuse to go to school.  It's been taking an average of 45 minutes to get him out of bed each morning since we returned from winter break, but I allow time for that.  I still find the process excruciating.  I try everything -the nice mommy routine, gently prodding,  and talking softly.  Sometimes I get a warm towel to rub his face.  There are days when I want to get a super-soaker and give him a nice in-bed shower.  I haven't gone there -yet, but I have let a bottle of water dribble on his head.  That goes over really well.

Yesterday he gets out of bed -gets dressed, eats breakfast but then comes upstairs to his room and lays back down.  When I return home from taking Blue to school,  I sit in the car for a few minutes reading a blog on my phone, avoiding the fight.  Dad is awake today and is the one responsible for the post wake-up prodding along.  As I am sitting in the car my phone rings.

"Um Honey, Red is going to have to pack his stuff and move out.  He refuses to go to school and I'm not putting up with this anymore."

"I'll be right in."  I get out of my warm car and to out into the 32 degree cold air,  and back into the house where the dance begins.

"Why do I have to go to school?  I hate it! I don't have any friends.  I'm so tired! Why can't I just stay home today?  Why can't I just be home-schooled? I'm not going!"

I can not home-school him.  It would be impossible.  He does not listen to me.  He is not self-motivated enough to complete assignments on his own.  We would both be completely miserable.  Not to mention that he desperately needs the social component of being in school.   Life doesn't get any easier after high-school if you want to have a good future.  He says he wants to work in the film industry.  Those jobs don't come to your house, knock on the door and say, "Hello...are you ready to work now?"  You have to get your education first.

He often compares himself to his one and only friend these days who is home-schooled.  I explain again that everyone's circumstances are different.  If he wants a future in multi-media or film-making he needs to be in an environment that will nurture that.  Besides, his friend actually listens to his mother.  Right now he is going through the painful, doldrum of pre-requisite, freshman classes.  His electives being Art 1 and Social Skills.  This obviously does not motivate him enough to want to get to school on-time everyday.

Back to the dance -I ask him to go brush his teeth and put on his shoes so that we can go.  He refuses.  We tell him that privileges are being lost with each refusal.  Computer time -gone.  Phone -bye-bye.  Still he refuses.

Out of desperation I call his Special Ed tracking teacher -can't reach her.  I try the School Psychologist -no answer.  I call the Special Ed Counselor -no luck.  I finally call the Campus Resource Officer -he is not in his office, but he does he call me back right-away.  He talks to Red on the phone.  They have a nice little chat and within moments -he is brushing his teeth and putting his shoes on. The officer asks that we stop by his office once we arrive on campus for a moment.

We do. "You know son -your mom is legally responsible for you until you're 18.  That means she's the boss.  Legally -you need to come to school everyday without giving her a hard time."

"O.K. I understand.  I will. " he says like a docile little pup. He even put on a half smile.

The officer congratulates him for making it to school and sends him on to class.  I'm thinking -Wow, how very nice of him.  He is so pleasant.  Part of me wanted him to scare the hell out of him -but I  suppose he was taking the right approach.

I go to see the Counselor after Red heads to class.  The philosophy at the school seems to be to remain positive, to give him incentive to want to get there and get there on time.  Mr. K, the counselor-talks about possibly switching his classes around so that he goes to his BASE (Social Skills) class 1st period where he will have some sort of engaging activity that he will want to get there on time for.

I walk away feeling like wow -here I am wanting to put the wrath on this kid, wanting to take away every privilege imaginable, and they want to give him incentive to come to school.  "We want to give him something to work for, not work against," he said. Wow! On one hand I was impressed at their positive attitude on the other hand I'm thinking -I've tried the positive road with this boy -nothing works.

The bottom line is that school is a miserable place for him and he hates going.  I hope that their incentive works.  Meanwhile, there will be no cell phone for a while.  If he wants it back -the incentive will be to get up on time in the morning.


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Wednesday, January 12, 2011

Only Human



Yesterday after school Blue and I made a mad dash out to go to the store for my mother.  On the way, he says, "I'm really in the mood for tacos."  What the heck? I took the opportunity to have a little one on one time with him to hear about his day at school.  When we're at home, there's no telling what kind of interruptions we will have -so off to Chipolte we went.

I had a mini quesadilla (just so that he wouldn't have to eat alone...not).  He had two burrito like tacos with charbroiled chicken only.  No cheese, no veggies, nada!  We both had a coke and a smile.  It felt so good to be alone and connected to him.

I had just read an article earlier in the day about children being bullied at school on Thinking Persons Guide to Autism -Imagine  After reading it I thought, how could you not know as a parent that your child is being bullied? I talk to my kids everyday.  I ask them about specifics of their day, and if anything was unusual, somehow I think I would know.  I check on their facebook page and eavesdrop on conversations with friends and of course with each other.  (Sorry...there is no privacy in my house.) My kids are usually brutally honest and they don't miss an opportunity to complain to me about something.  If anyone was bothering them, it would show itself one way or another.  You just have to be paying attention.

Blue started telling me about a disagreement he had with a peer who also has autism.  This friend seems to get pretty stressed out easily. When he does, he goes through a miniature melt-down with crying, flailing his arms, hitting himself, pacing and sometimes hiding underneath a desk.

It's kind of ironic that Blue gets so exasperated by this behavior.  He was pretty explosive himself just a few short months ago.  He has been doing so much better with agitation and melt downs since we started him on a mild dosage of Abilify.  I reminded him of this fact and also the fact that he still gets pretty agitated by his brother at times.  He likes to be in control.  He damn near wants to parent his older brother.

I explained to Blue that everyone with autism is different.  His friend's autism causes him to have these outburst, mostly when he feels like something is happening that he can not control and he desperately wants to.  I cautioned Blue not to take it personally, not to try to fix it,  but to just be patient and realize that he isn't doing it on purpose.  A lot of his behavior probably can't be helped.  We also have to throw into the mix, another child that is in their group who has ADHD, is very impulsive and does a lot of name-calling.  I'm sure that sends the friend with autism over the edge.


"Do you remember how on edge you were in the beginning of school?" I asked.  He looked at me deep in thought and shook his head to the affirmative.  


He gave it a lot of thought.  He came home and made a story board of what happened that day so that he could process it and then explain it to their Social Skills Teacher, who was not happy about the situation. He told me that his teacher had said, that some of the things the boy was doing was "on purpose to get attention."  I can't imagine that to be true.  However, I don't know the boy and all of his situation personally.  She may have some knowledge about him that I am not privy to.  


I cautioned Blue that it's hard for us to judge weather someone with a disability is doing something on purpose unless we are actually inside his head, and walking in his shoes.  Maybe I'm being my usual Polly Anna-self about it, but I usually give people the benefit of the doubt.  

He asked me if I thought his teacher was doing a good job with his friend.  To which I replied, "I'm sure she is doing the very best she can with the resources she has. It takes a lot of patience to work with kids who have special needs.  That doesn't mean she's always right and that she won't loose it sometimes.  I try to be patient with you boys, but sometimes I loose it.  We're only human." 


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Monday, January 10, 2011

Terror at the Table

Blue my soon to be 12 year-old calls his brother Red a terrorist.  "He terrorizes this house, holding us all hostage!" He says.  There goes that brutal honesty.  "We can't even relax in our own home!" says Blue. I have to agree with him to a degree.  The simplest things can be turned into a circus act.  What really gets me is that it's the eldest of the two whose behavior is the worst.

Last night we had homemade fried rice for dinner.  My mother cooked, as she now lives with us. She uses green and red bell peppers, green onion, bean sprouts, ham (leftover from Christmas) and egg.  We also threw in some leftover peas. Her recipe is renowned in our family.  I also made steamed broccoli.  Now -I knew this wouldn't go over well because there are 'too many colors' in the fried rice. Typically the boys don't like their foods 'mixed together'.  They mostly like everything served and eaten separately.  So I actually prepared a less colorful version for them, with just the rice, egg and ham.  The broccoli was served on the side.

Red had company all day yesterday.  He and his friend made a movie called "Kung Fu Brothers".  He spent the day with his friend here at the house editing the movie and burning the DVD.  It was actually a quiet day here at home because he was preoccupied with this project.  Just before dinner, my husband took his friend home.  When Red walked through the door and saw what we were having for dinner -he instantly showed us all the other side of his personality.

"What?! I have to eat that?! There's no food in the house! There's no cookies! There's no cereal! Why didn't you go shopping Mom? Why can't I just have hot dogs or something?"

Mind you, this is the same kid who was caught on video eating wild rice and fish at my nephew's house a month ago.  He says he ate for my nephew because he was afraid of what might happen if he didn't.  My nephew is about 6 ft 3 with a very deep voice (intimidating) but of course he wouldn't hurt a fly.  (Unless the fly wouldn't eat his vegetables!) :-) Red isn't afraid or intimidated by us.  He doesn't care what we think about him.  We're just his parents.

"We're going to have dinner as a family and this is what we're having. I did prepare a simple version for you and your brother.  You like all of the things in that version (ham, rice and egg)  so you should have no problem eating it," I say.

"I don't want to eat that!" And so on and so on.

We say our prayers and sit down as a family.  I actually made sure everyone was served, but lost my appetite because of all of his antics.  I decided I would eat after everyone else finished.  He laid his head down on the table.  He pouted and shouted like a toddler.  I wanted him to at least try it before he just flat out decided that he didn't like it.  Of course I had my mother coaching from the sidelines (not helpful). "Back in my day blah, blah, blah!"

This is why I have avoided this issue with him in the past.  We have so many freakin' battles, I just don't have the energy to fight them all.  After I've spent time and energy preparing a meal, I want to sit down and enjoy it...not fight to get him to eat or listen to him tell me how disgusting it is.

Everyone at the table finished their meal while he was still pouting and slow poking around. Blue ate seconds of his rice and then tried the broccoli.  I told him how it is like a broom sweeping all of the toxins out of his body and giving him nutrients.  He asked for seconds!  Of course, this infuriated Red! "Stop it Blue! I hate that look on your little face!"

We pulled out the old, 'if you want any dessert, you need to finish your dinner' trick.  To which Red replied, "Why are you being so mean Mom!?"

He finally finished his meal and shortly thereafter turned back into his original personality.  "What's for dessert? I'm sorry Mom and Nana for how I was acting."  He says that, 'I'm sorry' line so many times during the day, till it looses it's value.  It's really like a script instead of a sincere apology.

I finally sat down and ate my dinner.  I didn't have ice cream for dessert like everyone else.  Instead I had a glass of wine.  Ice cream wasn't going to do it for me last night.  Now if I had chocolate chip cookies to go with it -that's another story.

Friday, January 7, 2011

Autism Speaks


Wow! Yesterday an entry from my blog My Prayer was published on the Autism Speaks  In Their Own Words official blog! I was so excited and thrilled by this honor.  This meant that thousands of people would read words that I had written.  Not only were they my words -but they were important words of prayer for my children.

These people who would read would have all felt the same frustrations, feelings and have the same hopes and dreams for their children who are on the autism spectrum.  Many of those people are joining me in prayer.  That means all of that positive energy is being focused on my boys.  What a blessing.  I thank each and every one of you for reading, praying, meditating and sending positive thoughts our way!

The wonderful world of blogging in the autism community has helped me immensely.  We all have those "woe is me" pity party days.  Then we read about something positive that someone has experienced with their child and it gives us hope.  Or we read about a new idea parenting idea that someone is using and we ad it to our arsenal.  We can find out about treatments and therapies that others have tried.  The resources are endless.

Just this morning I got advice from Tanya@TeenAutism (who btw I am beginning to idolize) regarding privileges and consequences.  She referred me to pixiemama who had just written a post about the very same subject, wherein she asked for advice from other bloggers and they all gave their two cents.  Then I picked up at least one of those cents  to figure out my own "currency of privileges" to implement in this house.  Pretty awesome huh?

There are days when I read about a single mom who is parenting a special needs kid or two on her own.  Then I think -what the heck am I complaining about?  This is hard -but there are those who have a much more challenging road than I do, and they are making it.  It gives me the strength and courage to keep going.

When I read about someone who is just as frustrated as I am -I feel less alone and less guilty! I know for sure that we all have those days where we feel that somehow "this is all my fault" or "what am I doing wrong?" Well -it's not any one's fault.  We are all doing the very best we can on any given day with the circumstances we have to work with on that day.  When we know better -we do better. When we don't know better...we have a glass of wine and call it a day!

We will all get there together! Thank you all so much for reading and sharing.

Wednesday, January 5, 2011

Baffled


My first born son is now 15 years old.  We have known that he has special needs since he was a toddler.  He was first diagnosed with a speech delay, later ADHD, then depression, and now Aspergers.

It took a while for me to accept the ADHD diagnosis, because at first I thought that the schools just toss that label around like it's a frisbee.  I had private testing done where the diagnosis was confirmed.  It did explain some of his behavior i.e. his tendency to be off in his "own world" and his impulsiveness.  It did not however totally describe him.  I knew there was something more.  He was a jigsaw puzzle and all of the pieces were not quite put together.

When we received the Aspergers diagnosis in his first year of middle school it was scary, but at the same time, it was a huge 'ah hah' moment.  It explained so much...the incessant talking about areas of interest, the obsessions, the difficulty with peer interactions, depression as a result of feeling different than others, lack of understanding humor, idioms and context clues,  difficulty with understanding fiction while he was an excellent reader of non-fiction.  It further explained his sensory issues and limited diet.

Here we are three years later and I still look at him sometimes and say, "WTHeck?" What is with this kid? Why doesn't he get it? I've said the same thing over and over again.  Does he think if he just keeps asking me the same questions, the answer will somehow change.  We usually have this problem whenever the answer is no.  No -we can't buy that.  No -you can not have company today.

Is he thinking let me just beat her down and wear her out -eventually she will give me what I want.  That is exactly what he's thinking. He has actually said it out loud, "Why don't you just give me what I want so we can avoid all of this."  It kind of sounds like a threat...or at least intimidation.

If you have been behaving atrociously, I am not going to turn around and reward you by allowing you to have company.  If you were not on time for school -I will not reward you by giving you a ride home.  You will take the bus.  If I take you to a restaurant and you are rude and ungrateful, why would you turn around and say, "Now can we go somewhere else?"  The answer would be NO!

O.K. so in my head, I know the answer to many of my own questions.  He has autism.  He is emotionally immature.  Sometimes, he just likes hearing the sound of his own voice and his own familiar dialog.  He makes statements and asks questions that comfort him somehow -even though they annoy the hell out of me.  Also -he is a teenager.  It his his job to test the limits.

It is my job to maintain the balance, keep the peace and to hold the line.  However, just because I know there is a reason for his behavior, doesn't make it any less painful to deal with.  That doesn't take away the headaches.  I often find myself wondering is this Aspergers or just a teenager trying to push my buttons? What's the difference? It's all exasperating.

Lately, it seems like things are going backward not forward. It almost seems like he's regressing in some ways.  I am looking towards the finish line (although I know it's not really a finish line).  I'm looking at him becoming an adult.  I want him to eventually become independent.  I want him to be successful.  I want him to be out of my house.  (I know that sounds bad...but hey, these are my confessions).  While he seems to be running in the opposite direction or at the very least, running on a treadmill that goes nowhere.

Why is it that I am watching his brother (who is 3 1/2 years younger and also has Aspergers) take off like a lightening bolt seemingly growing past his brother?  In this past year I have watched Blue become an independent, organized, self-starter, excellent student.  He gets up on his own every morning, takes care of all of his responsibilities for school and personal hygiene independently.  (Except the occasional reminder to put on deodorant.) While getting Red to do any of the above is like pulling wisdom teeth with no anesthesia or laughing gas. (Well..white wine is my laughing gas, or if things are really tough, a martini or a margarita.)

By the way, over Christmas vacation Red was up almost every morning before everyone else -usually around 8 a.m.  Sunday morning -he wanted to go to church with a friend.  He set his alarm and was up and dressed, on his own by 8:15 a.m.  Two days later, when school started we were back to "I'm just so tired!  I can't get up. I don't know what's wrong with me."  Yes -you know exactly what is wrong. "I just hate school because I have no friends." Exactly!

I realize that every child with or without Aspergers is different and I shouldn't compare him to his brother.  Still, it is baffling. I wish that he could be more introspective and tell me what he needs.  He can't seem to do that, so I have to help him figure it out.

I am the one person in the world that he knows will love him through anything.  Somehow that entitles me to bare the brunt of his negative behavior.  He doesn't have many friends,  that makes him sad, that makes him depressed.  Who does he take it out on? Me!  He's bored so he spends a lot of time fixating on the next thing he wants to buy and when he can't get it right away, who does he bug to death? You guessed it...me!

Where is his father in all of this...well thank God, he's still here.  Many fathers of special needs children can not deal with the pressure. They often have a hard time with the amount of time and attention that these children need.  Not to mention, disagreeing on treatment and parenting issues.

In our house, Dad's patience aren't nearly as long as mine.  Red knows this -so he will only approach Dad with certain nonsensical things and he will only push so far.  I play completely dumb when it comes to his computer, so he has no choice but to go to Dad with those issues.  Dad also has a knack for drowning things out much better than I do.  He also has the added benefit of escaping to the office or out of town on business on a regular basis.

The bottom line here -is that there has to be a better way.  Something has to give.  We need to do something different because I'm loosing it.

One of my New Year's resolutions is to find that better way -to get some answers and to help him move forward.  I have to keep him busier so that he won't be bored and bug the s#*t out of me. I have to find a social skills coach, a mentor, someone or something to help him to help himself.  He has a therapist and a Psychiatrist, but we can't keep doing the same things and expect different results.  This may mean having him re-evaluated and getting a second opinion from a Neurologist or Neuropsychologist to make sure that we are on the right track.

It's crunch time.  I have three years before this dude is 18.  I may be wishing on a star to hope that he will be on the road to independence by then.  I do know this for sure...he has loads of potential.  I intend to see to it that it does not go to waste.