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Wednesday, February 29, 2012

The Aspergers Excuse -Revised

Editorial Note: I am republishing this post because of a very ignorant comment that was left on the previous version.  Now....I could have just let this ignorance go...but then, I wouldn't be doing my job as an advocate for my children and other's with autism. 
The update and response to the comment, is at the bottom of this post.  Please read all the way through: 


Has anyone ever said to you, "Having Asperger's is not an excuse for..." in reference to a certain behavior? Well the first time someone said it to me, I just about blew a gasket!  I wanted to knock this woman into last week!  She was Blue's 5th grade teacher for a hot second until I pulled him out of her class.  She told me that Blue was mean and, "Having Aspergers is not an excuse for being mean!"  Well -it may not be an excuse, but it certainly is an explanation.


How about this?  Having Aspergers means that you can be brutally honest  --that you don't have the filters to bullshit around.  You say exactly what's on your mind.  Now I realize that doesn't always look politically correct, especially when it comes out of the mouth of a child.  However, a child with Aspergers doesn't have a clue about being politically correct.


How about --having Aspergers means you don't have the natural ability to think about how what you're saying or doing makes another person feel, nor does it give you the natural ability to care about how the other person is feeling.  Hence, Aspergers (autism) is a disability! 


These things are something that a person with Aspergers has to be taught.  Because of their rigid brains, they may have to be taught over and over again.  They may get better at it ...they may not.  They may get it...but they may never totally get it (or so I've been told).


This past week or so -I've been in a bit of a snit with my son's high-school administration.  Red has been in a pretty dark place every since Valentines Day.  Why?  Of course because he wants a girlfriend.   He has no idea what that entails or what that really means.  Furthermore -he doesn't have a clue as to how to go about making that happen.   He wonders through the high-school corridors everyday seeing couples, hugging, and kissing, looking as he says, "happy".  He wants that.  He wants to be a part of something.  He wants to feel special.  He wants connection to is peers. They have our kids in these "inclusion" programs, and yet, they are not really included in much of anything besides classes. 


So -let's just say that he has been behaving in a way that is totally counteractive to achieving his goal of getting a girlfriend, and maybe even sabotaging making any kind of friends.   I've said before that he is his own worst enemy.  He is displaying some behaviors that make his peers "uncomfortable" at best.  He has had conversations with me that let me know for sure that he "doesn't get it" and that are tell-tale that his thought process is completely skewed, negative,  depressed and not based in reality.


I go to the school and to inform them of his negative thought process  --that he is extremely depressed and somewhat irrational.  I am afraid that in his state of mind that he may say or do something that is inappropriate.  I ask work with him intensely on these thoughts, feelings through social skills and sessions with the school Psychologist.  I ask that for the short term, he not be unsupervised in any unstructured environments such as the cafeteria during lunch based on his current state of mind.
Three days later the phone rings...


"There's been an incident in the cafeteria."
How could that be?  Didn't I just tell you that he shouldn't be without supervision in the cafeteria? 
I was told, "An Administrative Directive has been issued stating that he can no longer talk to certain students."
Well...good luck with that!  What the hell does an Administrative Directive mean to a boy with Autism?



I was also told that he was spoken to by the campus officer  --that "he handled it really well."  Red told him that he didn't mean what he said  --that he was just angry.  He was told that having Aspergers is not  an excuse for his behavior.  Once again I say,  Aspergers is not an excuse....but it certainly is an explanation.


Again --most people with Aspergers  are completely unaware of how their actions or words make other people feel. That part of their brain may not be wired correctly.  Combine that with, depression, immaturity and lack of social skills.


Yes...he seriously needs to learn about the consequences of his actions and words.  Having to speak to with the officer scared the bejesus out of him.  So...yes he probably learned that he can't go around saying whatever the heck he wants to whomever he wants.  And yes --it's good that he is learning some lessons behind the safety of the walls of his high-school, but could this incident have been avoided? Certainly.


Perhaps we should be spending time intensely teaching him the skills he needs to make friends and maybe connecting him with a group of peers who share similar issues who can support one another, so that they feel less isolated --less alone and therefore not act out inappropriately.  In fact, because I am so concerned about his social skills and his lack of ability to make friends, I took the step of having him in a private social skills group and individual counseling to support his needs. 


The funny thing is, (o.k. so maybe not so funny) --a couple of days after this incident, I call the school Psychologist, completely distraught because we had just gone through the weekend from hell because Red was so disturbed by the events and by having to speak with an officer.  I told her, "I've spoken to him over and over about this and he doesn't get it!"  She said to me, "And he may never get it totally." This took the wind right out of my sail.

What I wasn't told by anyone including the Administrator who issued this "Directive," was that they had him sign the document which basically admits to wrong doing and threatens him with further disciplinary action should this behavior happen again.  I didn't find this out until I went through his backpack days later after a phone call I placed to the school asking where it was. 



You had my 15 year old son with Aspergers who doesn't get it, sign an Administrative document that will likely go in his permanent school record, with out my consent, consultation, or presence.  I have a serious problem with that.  In fact, I've been told that an attorney would have a field day with this.  

Let's just say...currently I am weighing my options.  And you haven't heard the last of this story. 

UPDATE: 
Blue's 5th Grade teacher made the original comment to me, has since been further educated about Aspergers.  I did pull him from her class because I knew that she didn't "get it". I refused to let my child be tortured everyday, for the entire school year in a classroom with a teacher who was obviously so uneducated about his disability...a teacher who's mind seemed to be closed. 

She made the comment because my son had asked her child (who is also was also a student in the 5th grade) "Is your mom this mean at home?" I don't know seems like a legitimate question to me.

Well, guess who ended up educating her? My son!  He gave a presentation at our Annual Teachers conference in the school district about  "How Teachers Can Help Aspergers Students in the Classroom."

By the end of that school year, they became friends.  And my "mean" child gave her one of his original oil paintings to remember him by.  He also e-mailed her over the summer to see how she and her son were doing.

The uneducated comment that was left on my blog was as follows: 

"What about the rights of the other students? Because your son has aspergers, it was ok for him to verbally abuse other 5th graders? Apparantly so because when the teacher pointed it out you had him removed from her classroom. My daughter was in a classroom with a child with aspergers. A great portion of the teacher's time was spent dealing with his misbehaviors, thus neglecting her teaching and the needs of other students. 
I fear that her she will not meet her potential because the school system is so bogged down accomodating the asinine expectations of people with children with disorders like aspergers. I believe that every child should have the opportunity for an education, but not to the extent that it interferes with the education of others."

I asked my lovely peeps, mothers of those with autism on my "Confessions" Facebook Community Page  how they would respond to this obviously,  uneducated woman.  I got some great responses.  Here are a few examples:

Michelle says, "would she feel the same way about a student with a more 'obvious disability' (ie in a wheelchair). Would she complain about the teacher helping this child in and out of his desk, etc. because it means less attention for her child. This is why we need teachers who are better educated which would lead to students who are better educated which would lead to parents who are better educated in Aspergers/ Autism. Ignorance is the enemy here."

Hope says, "I don't feel comfortable with the idea that having Aspergers is equated with misbehavior because that's incorrect. My son is a stickler for rules so misbehavior is just that...misbehavior. If it's not children with special needs it would be another group she blames for the teacher's divided attention (ex. ESL, physically disabled, etc. etc.) Won't she ask her legislators why classrooms are overcrowded, teachers have eroding job stability and insufficient support, and tolerance isn't taught in schools. This would be more productive than being a blog bully who spews ignorance." 

Lisa says, "because my son has difficulties being socially appropriate in times of stress, children like your daughter have the chance to learn tolerance and compassion instead of growing up to be an intolerant, ignorant bitch like their mothers. My son does not choose to have a disability that causes these kind of outbursts, you however chose to sit down and type a rude and ignorant comment on my blog instead of taking that time to educate yourself about Asperger's so that you can be a kinder more understanding human being and be a wonderful example to your daughter. Shame on you!"

I really love Lisa's comment.  It is the most reflective of my feelings after first reading the comment.


The grand consensus is that we all should be working with our school boards, teachers, school administration and legislators to improve our education system for "all students".  Teachers do need support within the classroom so that all children can get the best possible education.  Aspergers, autism and other disabilities are not going to simply go-away, because they are an inconvenience to those who don't walk in our shoes.  They are not disabilities or behaviors that are chosen by our children.  We need to be supporting them, and teaching them with compassion instead of blaming them, or their parents. 

This woman may or may not read these responses.  However, someone will be further educated by reading this post.  My son has already converted at least one closed-minded teacher.  I am here to carry the torch. 

And there you have it in a nutshell.

Saturday, February 25, 2012

As His World Turns

A little fun-


Red is telling me about a teacher who used to "yell" at him.  Anyone who corrects him and has expectations from him in his eyes, they are "yelling".  This teacher who he is referring to is one who is not known for being the yelling kind.
  
I say to him, "Honey, you would make Jesus Christ himself yell.  Help me father! I don't know what to do with this boy!  He just will not listen!"
"That's not funny Mom!" he says. 


Actually, it's very funny...and probably true.  I can picture Jesus throwing his hands up to his heavenly father, looking all confused.  I wish I could draw a little cartoon.
______________________________________________
We have a very busy day planned.  First we have his neurology results appointment.  As it turns out, Red is doing so much better.  His blood work looks better, platelets are up.  His EEG was normal.  The medication seems to be working.  The depression is markedly better and so is his attitude...especially, at school.  He is not complaining at school, is compliant and much more social.  He is not as fatigued.  He is getting up in the morning with relative ease and getting ready for the bus everyday, on-time! (MAJOR).  


Unfortunately, the cognitive testing is disappointing.  His percentiles are low, but mostly due to slow processing.  The tests were all timed.  What he completed, he scored 98% on average.  The problem is he would only complete 50 to 60% of the questions due to slow processing.  Even though this is disappointing...it's good information to have, to understand where he is, how he learns and what we need to do to make things better.  He will need the academic accommodation of 1 1/2 times to complete work and tests.  


The Neurologist recommends that he improve his diet, by eating more protein and vegetables and less carbs.  (No surprise here...shouldn't we all do that?)   He also recommends that he get involved in sports activity to help rapid action in his brain.  More movement will stimulate his brain to get used to moving and reacting faster.   I am going to have the school do an OT (occupational therapy) evaluation to see if we can implement some of this rapid action into his school day.  We also will be signing him up again for swimming.  


When we are finally done with our appointment, we are both starved.  I only had time for coffee and we spent more time than anticipated in the doctors office.  We go to his favorite restaurant for lunch after the appointment.  Red would be satisfied with a fast food hamburger, but I want a healthier choice.  I've got terriyaki salmon on the brain.  We sit down to order and he is wearing the frowning face, which I'm sure he isn't even aware of.  I remind him that we are in his favorite restaurant.  
"Would you sit up and take that scowl off of your face?" (Don't I sound like a mom? Geez...who is this woman?) 
"What are you thinking about?" I ask...kind of afraid of the answer.  


He goes into his latest dialog about developing his business and making money.  He asks me the same questions, that I don't have answers to over and over again.  


He tells me he doesn't want to go back to school after lunch.  We have a meeting.  We are definitely going.  At least he won't be in class.  We order dessert...his favorite, Pizookie (white chocolate macadamia) warm cookie with vanilla ice cream on top.  He is actually willing to share with me as long as I promise not to eat more than him, which would virtually be impossible.  This is also an improvement.  A few months ago we almost came to blows over dessert that he didn't want to share.


The meeting is the follow up 2nd half of his VISIT (transition planning) meeting.  I don't know how we got so lucky to have the head Transition Coordinator in our school district to not only do our transition meeting, but she also does Person Centered Planning meetings with Red once monthly to help him work on personal goal setting and achievement.  Hallelujah! Thank you Jesus! 


The meeting is highly productive, very visual and motivating.  We talk about where he is now, where he wants to go throughout his high school years, and what supports that we anticipate him needing after high school.  The district will provide support services for him through age 22 as needed to help him transition into work and independent living! (Hallelujah one more time!) His vocational teacher, the School Psychologist, Special Ed. Lead and Special Ed. tracking teacher are all in attendance.  


Red has apparently made great improvements since he's been at the new high school and even in his vocational classes there is improvement.  We put together data in black and white among other colors, to paint a picture of where he is, and what he needs in order to get to where he wants to be.  Mrs. Wonderful, the Transition Coordinator, is encouraging him to start to take control of his own life and to stop leaning on me so much.  (Yeah, he's getting pretty heavy.)  We put together direct goals of social-emotional, and self-care that he should be doing for himself, including chores and planning his own free-time.  He was open and participated very well, once he warmed up. He always enters the room like he's going into a torture chamber.


He comes home after our meeting, and watches a DVD that Mrs. W- loaned him entitled, "The Next Step -Failure is Not an Option." The video was actually put together by a young man with the same goal as Red --video editing.  Red was really encouraged by all of the stories of these individuals with various disabilities who did not allow that to stop them from becoming successful in life and completing their education.


He has a tendency to play the, "Woe is me! I have Aspergers, so I can't do it.  It's too hard," card.

I think the whole idea of transitioning into adulthood scares the crap out of him.  He has so much work to do to get there.  He's afraid that it will be too hard.  That he he won't have any support.  The truth of the matter is that he will.  He will have the support of our school district and many other state and federal programs for people with disabilities.  He will always have our love and support.  Someday, I want him to be a man --to stand on his own two feet and use his gifts and abilities to take care of himself.  This will take a lot of work, time and patience.  And we will be there for him all the way. 


This is one of the best days I have spent with Red, in recent history.  We were together from sun up to sun down and he didn't drive me totally bananas!  I pray that there are many more days like this to come.  They are golden. 

Wednesday, February 22, 2012

Boredom is For the Boring

I want what I want and you people are not giving me what I want.  The world revolves around me haven't you heard?

The entire weekend is all about BOREDOM according to the 16-year-old boy we call Red.

"My computer sucks!  I need a new video card."
Dad just gave him 2 video cards from his machine.  Dad got a new mega video card and passed his two perfectly good video cards down to Red.  Of course, non-job-having Red would prefer the new video card.  You know...the one Dad got.  That is Dad...the one who works hard, pays the bills and makes his entire life possible.

Dad's response...zero.  He's very good at ignoring.  Which sends him directly to me. (Thanks a lot Dad!) You know, Mom, who knows nothing about computers, but is supposed to somehow be able to control Dad.  My response? "Children in Africa play with sticks and empty plastic bottles and they're happy.  Being happy with what you have is a choice."  What he has works...it's simply not good enough for him.

"When you don't have a job...you have to be satisfied with what you are given.  This is no different than it is was for me when I was 16.  When my parents couldn't give me what I wanted...I had to get a job. It was the same for your older brother when he was 16.  The only thing we owe you is food, clothing, shelter and education.  Everything else is gravy...you know, icing on the cake."  What does that mean to him?  Not much.  He doesn't want to hear it although, he's heard it many times before.

"But I don't have a job!  You guys are being so unfair!"
"Exactly...you don't have a job, so you don't have a choice, but to accept what we give you and you SHOULD do so graciously."  I may as well be talking to a brick wall.

He is trying to create his own video editing business, which I commend him for.  He has a nice video camera,  editing software, which he taught himself how to use and he has done several jobs, mostly for friends and family members. The latest thing however is, "I need more equipment and if you wanted to help me with my business...you would buy it for me."

My response, "I will be glad to invest in your business when you have some jobs lined up so that I can see a return on my investment."
"What do you mean a return?"
"An investment...means someone gives you money for your business and you pay them back, plus a small profit when you begin to make money."
"Why would I give someone my money?  They didn't do the job!"
"But if it weren't for THEIR money, you wouldn't be able to do the job."

I try to explain to him that he has to work with what he has until he can make more money or get more jobs lined up.  Then he can buy better or more equipment.  I'm not just handing out money for equipment that he will sit in the closet when no business drops into his lap.  I'm glad that he is at least thinking about making his own money, but again somehow, it falls back on us to spend more money...just because we're his parents.  This has to be repeated over and over and over again...before he will hopefully, get it.  

So we get the, "I'm so bored! I can't play my game on my computer!  You guys are so unfair!" all weekend long.  Any redirection such as, "Play the Playstation.  Watch a movie or call a friend," is met with considerable objection.  Essentially, he is creating his own boredom.

I read this timely article, Of Presidents Teens & Dreams.  Ronae Jull, the author, hits the nail on the head for so many of our teens today.  It's like she's living in my house.  One of the things she says that effects our teens dreams is this sense of entitlement.


"This entitlement attitude has at its base a great self-centered focus:
 What can you do / give to ME? I deserve it just because I’m alive.”

The article gives parents advice on how to help our teens grow up and get a reality check. I paraphrase what she says here:


  1. "Stop giving your teen everything. STARTinvolving them in open conversations about budgeting and economic changes affecting the family.
  2. Stop putting up with your teen’s selfishness.  Selfishness is a normal part of development that needs parental help to grow out of. START with clearly defined and communicated expectations for behavior and attitudes."
Read the entire article to see exactly what she says.

I assign a few chores, which he does extremely well because he wants to be paid.  He thoroughly cleans his own disgusting bathroom.  Toilet, floor, counter, sink, mirror, bath and shower.  He even steam mops the tile for the first time.  Why should I pay $5.00 for him to clean his own pissy bathroom?  To shut him up for an hour!  Desperate times....

So he creates this world of negativity for himself and attempts to suck us all into it.  He rants, he screams, he hates everyone and everything all weekend long.  All of this is our fault and our problem...not his.

Monday morning, he is suddenly so sorry for his behavior.  "But you guys really do make me mad.  We need to have a family meeting to help us figure out how to get along."  I am working on setting up this meeting.  However, no family meeting will change the fact that if you choose to not be satisfied with all of your blessings...you will NEVER be happy.

Tuesday afternoon he comes home from school, having had a conversation with the school Psychologist, with a whole new attitude.  Suddenly, he decides to call all of his friends to check in and have pleasant conversations.  He is kind to his brother.  He goes out with me for a walk.  He's a whole new kid, which confirms that the antics over the weekend were totally of his own volition and creation.

Of course the pleasantries come along with an underlying goal.  He says in the car on our way to the park "I really need to work on my behavior if I want to go to Six Flags during Spring Break."

Amazing!  

Monday, February 20, 2012

13 is Sweet!

The celebration of Blue's 13th birthday started on Friday morning.  I have tradition of waking them up with my off key version of "Happy Birthday."

Happy birthday to you
It's 7:32
You're 13 to-day
And I love you too!

He barely opens his eyes...says, "good-morning mom," but doesn't get up.   A few minutes later I come back.

It's 7:38
You're going to be late
It's time to wake up
And eat your pancakes

Breakfast is served with a candle in your pancakes or waffles and I sing again.  I don't have many traditions, so I hope this is one they will remember and perhaps pass on to their children.  Scars from my own childhood of not celebrating birthdays because of my mother's choice of religion, make me want to over-do it a bit with my children.  That doesn't necessarily mean buying them expensive gifts, or having huge parties, but making each birthday special and memorable in some way.

After school on Friday, there is a school dance.  He and his friends have been talking about Valentines Day and this dance for the past 2 weeks during the carpool to school.  It seems as if the interest in girls is starting to blossom.  The interest is mostly in it's very early, unrequited crush stage.
"I'm really scared to say hi."
"What if she doesn't like me."
"Do you think she likes someone else."
"What if she frowns at me and doesn't say anything?"

It's just so funny to listen to them talk, while trying desperately not to get in their business.  Any and everything I say embarrasses Blue to pieces. .

The night of the dance I tease Blue..."Isn't it nice they're having a school dance just for YOUR birthday."

Saturday is an all day "Destination Imagination" tournament.  D.I. is all about teamwork, creative thinking and problem solving.  All of his buddies from his social skills class @ school are on his team, which makes for a really interesting dynamic.  I elected Dad to manage the team.  It's great for him to get a taste of what life is like on the spectrum from these boys.  It helps him realize that it's not just "our" boys who have these behaviors.  This is autism!  As it turns out, Aspergers Dad  is great with these boys.  If only he could apply an ounce of that patience to Red.  But as my mother says, "Red would make Jesus Christ want to scream."

Dad and Blue are gone all day for the tournament, which would have been nice if Red were not complaining all-freakin-day-long!  I was ready to jump out of my skin by Saturday night.  I finally locked my door and went off duty.

We have the real birthday celebration on Sunday afternoon.  I take Blue and his best friends, who are also on the spectrum,  to a place filled with trampolines for 2 hours of jumping.   On to Fudruckers for lunch afterwards, an IceCream cake back here at the house and hanging out for video games.  Blue's friends are so funny and honest, yet quirky and blunt.  6 hours with 4 13-year old boys on the spectrum and it was a pleasure.

In stark contrast, a couple of hours at home with 16 year-old Red...and I'm freakin exhausted.  He is doing better on his new meds.  For the first week...it was like magic, his mood was so great.  He is no longer tired all the time and he doesn't appear to be depressed.  Yet, he is still a handful and then some.  He claims boredom all weekend long, which in my opinion is mostly by choice.  He does nothing to make any plans with any of his friends, which he is more than capable of doing.

He complains about some program on his computer.  He complains about his graphics card, which has just been upgraded by the way. (Not good enough).  He complains about every weekend being the same and how BORED he is.  When prompted to call a friend and make plans to do something, he is so stuck in complaint mode, that he never moves forward to do anything positive to make his weekend better.  He rants so long and hard that he works himself up to the stage of screaming by the time his dad comes home.  I suppose he expects that after being gone for nearly 8 hours, working with a team of boys on the spectrum, that his dad would come home and be happy to dive right in to start alleviating his list of complaints.

I don't really consider this to be a meltdown.  I consider this to be a behavior issue.  In other words, I'm bored and unsatisfied and YOU PEOPLE are not doing anything to make it better, so I am going to make you all as miserable as I am.  WRONG Answer buddy.  That is not how life works.  Your yelling and screaming trying to get us to bend to your will is going to get you the opposite of what you want.

He would calm down and apologize for his actions then a few hours later, he would get right back to complaining.  I think a big part of his issue was that Blue was having such an awesome weekend.  He had to do something to take away from that.  It's been that way since the beginning of time.  He HATES other people's birthdays.

Needless to say...I was so glad to put his ass on the school bus this morning  --I wanted to shout hallelujah and do the happy dance.  If only I had the energy.

Thursday, February 16, 2012

In the Village

He ran away again.  This time he is pretty serious --running out the door with nothing but socks on his feet, daring me to follow him.  I usually just let him run.  Isn't that sad to say, "usually" in reference to your child running away from home.  Usually, he runs around the block --sometimes to the corner store to buy some sugar to soothe his nerves.  By sugar I mean, soda, candy, cookies, ice-cream ...you know teen-age comfort food.

This time he just runs.  Cell phone in pocket ...he calls his best friend's mom and asks her can he come to her house, which is a few blocks away.  He requests that she please not tell me.  She tells him that he is welcome to come, but she has to let me know where he is.  He agrees.

I'm glad that he has somewhere to go when he needs to get away from us.  I'm happy that he has friends that he can trust and feels comfortable enough with to share the not so pretty side of himself and our crazy life.

She calls me, and I explain the reason that he is so upset.  It's anxiety over his birthday.  He set up this unrealistic expectation for what he wants as a gift.  When I told him that wasn't going to happen...he was shocked  --appalled even.
"But that's the ONLY thing that I want!  There is nothing else!  You just ruined by birthday!  My birthday is going to be terrible!"
This is typical black and white thought.  It seems to be developing into a trend that we must break.  This making of lists of these exorbitant gifts that he wants for a given occasion.  We have to squash it.  How? Is the question.  Very carefully is the answer.

In past years on his birthday, I've been lost as to what to get him since it's so close behind Christmas.  There was never a  list.  He is usually grateful just to go out or have friends over for his birthday.  It  all about the celebration of him...not the gifts.  Now he gets all amped up about what he thinks he has to have!

I ask his best friend's mom to please talk to him about this unrealistic expectation.  He loves her.  He thinks that she is a walking angel.  He will listen to her much easier than he will ever listen to me.  After all...I am the oppressor!

They have a nice chat.  I give him an hour to cool down. I think about packing his suitcase so he can go ahead and move-in over there, since this is such a horrible place.  Instead, I just bring him a pair of shoes to put on.  When I walk through the door, he is very apologetic. "I'm sorry Mom.  I just had a bad reaction.  I didn't know better.  I know I'm going to have a good birthday no matter what."  He hugs me with sincerity.  

When we get back home, he is actually afraid to apologize to his dad...afraid that he may not forgive him.  He actually starts tearing up again.  When his dad enters the room, he leaves the room.  He comes to me and says, "I'm scared."  I assure him that it will be o.k.

Sometimes, dad is still shocked by their autistic behaviors.  He expects a typical reaction from them.  He has that old-school mentality.  "These kids are so un-grateful!"  He says angrily.

The kids are frustrating and often their reactions are inappropriate, blunt, and appear disrespectful.  It's our job to guide and reshape their thinking.  They may have that initially shocking behavior.  They may over-react to something that happens that they did not expect or that they do not like.  The way we have to handle it is by addressing it when they are calm and rational.  Yelling at them or even talking to them sternly when they are upset makes them react with"fight or flight." They definitely will not absorb the lesson when they are in that stage of irrational thought.

Blue especially, is always receptive of learning the lesson once he has calmed down.  He always feels so bad after the fact. "I'm such a bad person," he will say.  Sometimes,  dad tends to forget that.  He reacts like, "How dare him!  Or Are you kidding me!?"  He wants to correct them on the spot, when they are spinning up, which makes them spin up more or ...run away.  And there I am in the middle, playing referee.

It's frustrating to me that all these years later, I am still explaining Aspergers to their father.  He gets it intellectually however, caught up in the moment of their behavior, he wants to react with logic.  You can't always be logical, in an illogical situation or rational, when the child is caught up in irrational thought.

Parenting these children takes extremely creative thought and a great deal of patience.  I think that  a lot of men just want to fix it!  And fix it quickly!  And mostly in the same ways that they were "fixed" when they were children.
"My mother would have knocked me into next week, if I did or said that!"
Oh really?  Did you have autism? And how well did that work for you?"

Parenting these kids requires education, thought and effort.  It takes no effort or thought to just knock a kid into next week.  When your kids are different...you have to parent them differently.  The point is for them to actually learn the lesson, not for us to simply assert our authority.   As he tells me all the time, "I'm a man!  I'm not going to react or sound like a woman!"

I am immersed in autism.  I am constantly reading books, blogs, and articles ...looking for answers and insight, trying to figure out the puzzle.  I read other parenting stories, so I know that these behaviors are not just my kids, trying to get over.  Some behaviors are typical, things that all kids try to say or do.  However, their reactions and thought process is almost ALWAYS different.  And sometimes, solving even typical parenting issues has to be approached differently  --so that they actually understand the lesson.   And it may have to be repeated over and over until they get it.  This can be frustrating.

Then we have my mother living here who is trying to understand these kids, but she doesn't completely.  Of course, she has that old-school mentality.  I can ignore her judgement.  I know my kids and their diagnosis better than she does, so I can't let her thought process interfere with what I feel is right.  My husband will deny this, but I think he plays into her thought process because it backs his up.  My feeling is, when you are both as educated about autism as I am, when you go to all of the therapy appointments, take the daily phone calls from school, advocate for their IEP's, sit in every planning meeting for them, do the research on medications and everything else that I do...then I'll believe that you know more than I do.

That's not to say that my husband isn't a great dad.  The boys do connect with him in ways that they can never connect with me.  They believe that he is all knowing when it comes to certain things, that they feel I have no clue about.  They love him immensely and want his approval more than anything in the world.  Definitely, more than they want or need mine.  He is my loving partner and he is the only one who can teach them, by example how to be a responsible man, husband and father.  He still frustrates the hell out of me and I do the same for him.  

I think that I am one of the most patient mothers on earth ...and even I lose it sometimes.  I have my meltdowns --moments where I just want to scream or cry.   In these moments...I am thankful for the village that I have to help me raise these boys.  I appreciate all of the mothers of  Blue's friends who help guide him.  I am thankful for our friends who come and pick Red up and take him hiking or talk to him about girls and self-esteem.  For my brother and niece -who mentor Red with his video business

There is an African proverb that says, "It Takes a Village to Raise a Child."  In this case...it takes a freakin army! 

Tuesday, February 14, 2012

Romantic Girl --Unromantic Life

"It's a cold, wintery weekend here in Austin.  Absolutely perfect weather for napping, snuggling, eating comfort food, watching movies and reading.  If only I had a family who actually enjoys spending time together."
This was my FB status on Sunday.  I know...funny right?  Funny, sad and true.

I am this romantic person lost inside of this unromantic life, with these unromantic boys that I live with.  And for this weekend's purposes...I"m going to lump my husband into the unromantic category.  Lucky for him, he has his romantic moments and is generally a wonderful guy. But we all know that no marriage is perfect and we all have an ugly side.  I am the lucky person who gets to see his, and he gets to see mine...more often than not lately.  When you live in a stressful environment, sometimes it's hard to be all lovey-dovey and nice.

Saturday is peaceful for the most part.  I spend most of the day in my pajamas.  Aspergers Dad takes the boys out to dinner and to Best Buy to look around.  Blue wants to window shop for his birthday, which is coming up this week.   I literally scream hallelujah as I lock the door behind them.

In the quiet, I get online to play Words With Friends on Facebook.  Unfortunately, I read the news about the death of Whitney Houston.  My heart is heavy because of this loss.  Another great artist who pays the price of high art with her life.  What is it about the greatest singers in the world that makes them succumb to a life of drugs?  It's so sad.

I think of all of the songs of hers that I loved at different times in my life.  I remember that first video I saw on MTV of her in the blond wig.  I have the fleeting thought of the  the boyfriend I was with at the time.  I think of how sexy I thought she was with Kevin Costner in the Body Guard.  And "I will always love you" was just --epic.  I think of her during that sad time around 2005, when she did the reality show with her husband, "Being Bobby Brown."  "Bobby!" she would call him in her very street, round-the-way-girl voice.  We got to see how much she and Bobby really were alike despite the image we had previously been sold.

Nevertheless, her voice was undeniable!  Her talent, larger than life.  I was pulling for her in her last "come back" album.  Thrilled to see her in her last interview with Oprah.  I was hopeful for her...and now saddened by her death.

Sunday morning we have a wintery mix of rain, sleet and a few snow flurries.  I am so thankful that there is food in the house and I don't have to leave.  My mom has plans to cook dinner for us. Awesome!  I plan to do laundry and relax.  (Yeah...right.  These people I live trampled all over every last inch of my nerves all day long.)  

Blue has become this angry teenager, who disagrees with every word I say.  He hates to be "bossed around" as he says by me.  Well...excuse the hell out of me for being your mother!  Red is doing better but he's talking pretty much non-stop.  You can't shut him up.  I'm trying to relax downstairs watching my trashy t.v. and suddenly everyone is hungry.

"What's for lunch?"
"There's nothing to eat here!  Well...there's nothing I want."
I offer a myriad of choices.  None of it is good enough.  Blue tries to make lunch so complicated that I just want to scream.  It's like he tries to see how far he can push me.  I don't think he's manipulative.  He just wants things HIS way and hates to be told no.

When I do make Blue and Asperger Dad lunch...they come downstairs and start complaining about what I'm watching on t.v.  Blue tells me how inappropriate everything is and his father is giving me "the look."  I call it the Big Pappa look of disapproval.  (I have a father baby, and you are not him!) 

I turn the television off.   I'm pissed! Wasn't I here first?  I just made lunch for you two and now you're complaining about what I'm watching on t.v.  You're welcome very much!

I go upstairs to my room.  Red is in my room watching some loud irritating show.  He got rid of the t.v. in his own room in one of his minimalist purges.  His t.v. wasn't good enough because it wasn't an HD 1080p, flatscreen.  This is just great!

There is no escape!  To make it worse...I have no wine in the house!

Later in the evening, I have to have to help Blue get through a novel for school.  He loathes this novel and it's violent themes.  "The Hunger Games" is assigned reading for his language arts class.  I find extreme irony in the fact that our school district gives parents and "opt out" to watch the President of the United States addressing children, to encourage them to work hard in school.  Yet, they assign reading to 7th graders with violent themes.  Where's the "opt out" for that?

Of course, I am the lucky recipient of his loathing of this assignment.  Although I am trying to help him, he is talking to me as if I assigned the novel myself.   Everything is my fault.  To top it all off, my mother chimes in taking issue with the way that he is talking to me.  She lets him know, in no uncertain terms, that he is being disrespectful to her daughter.  This sends him over the edge.  I have to corral him up to his room and calm him down.  Thanks Mom! I really appreciate your help.

It's a sad state of affairs when you start to get used to hearing your children saying things like, "I just want to end my life, because this homework is really stressing me out.  I'm such a bad person because I take it all out on you."

We talk through it.  I assure him, that I love him.  At the end of the day, no matter what has happened we end with, "I love you."  That's all that matters.  He agrees.  We get through the assignment and hug it out as I tuck him for bed.  (This is actually the best part of my day.)

By the time they all go to bed I self-medicate with a brownie and 2 ounces of milk.   I'm not speaking to my husband or my mother.  I've had run-ins with both of them.

Oh yeah...It's a Wonderful Life!

Happy Love Day! As my friend Elena says, "You are a cherished blessing to the world and to me." Thank you for reading and sharing this journey with me.

Truly,

Romantic Girl



Friday, February 10, 2012

Playing Hookie

Editorial Note:  If you haven't played hookie lately...you really should.  Find a beautiful place and get lost.



I grew up with the strictest single-mother on earth.  According to her, there was no dating...even in high-school.  I had a midnight curfew, despite the fact that all my friends could stay out till 1 a.m.   I could not see rated R movies.  There would be no teen night-clubs.  Sex was for married people, so there was no sense in us having a talk about it.  Other than, "Kissing and petting leads to pre-marital sex.  So you should not be kissing and petting."  

That worked out really well.  I had my first boyfriend in 10th grade.  I would sneak out to see him...giving her all kinds of lame stories.  There was plenty of kissing...luckily, I was too afraid to have sex.   I would even play hookie to hang out with him and our group of friends.   I did everything that I could possibly get away with...all without my mother's knowledge.  Including seeing my first rated R movie, "Saturday Night Fever" with a group of friends from my neighborhood.  

I promised myself to never be THAT mother.  I want my kids to be able to talk to me and ask me about anything.  Well...little did I know that I would have to Aspergers kids who do actually talk to me about EVERYTHING.  In fact, my 16-year old son informed me the other day about his research on porn.  "I looked it up on Wikepedia," he says very matter-of-fact. Great!  That's just great.  

I actually allowed him to watch a rated R movie "Snakes on a Plane" the other day here at home with his friend.  I could have made him go through the trouble of sneaking and watching it at his friend's house.  But why go there?  Apparently, the rating is for language, one scene sexual in nature,  intense terror and violence. 

When I turned 18, I finally told my mother, "You know, I would rather just tell you what I'm doing rather than sneak around all over town telling you I'm at point A when I'm really at point Z.  I'm going to find a way to do what I want to do, so I may as well be honest with you."  Her bottom lip dropped down to the floor.  She couldn't believe my audacity, but things changed after that conversation.

I guess there is still apart of that little girl within me who wants to do what I want to do, without having to answer to anyone.  I spend so much of my life doing for other people, being the responsible mother, wife, daughter and friend.  Sometimes, I just want to sneak away and do my own thing. 

Playing hookie is still something I do every now and then.  Lately, things have been so crazy, I haven't had the opportunity to do it.  Unfortunately, I'm not doing anything too exciting like sneaking off to make out with a boyfriend.  Although, wouldn't that be fun???  I sneak out for lunch, happy hour, shopping or to the movies.  (Ssh! Don't tell anybody.)   I use cash for all payments so that my steps can not be traced.  When anyone asks questions or calls me and says, "Where are you?"  I simply answer, "I'm not at liberty to say."  

The boys have been out of school for the first 3 days of this week thanks to teachers in-service training. Essentially, we had a 5 day weekend.  Yes...that's right...TORTURE!  Thursday morning, I get them off to school.  I decide...this is it.  This is my day to escape.  Friday I already have an appointment scheduled for my mom, I have to take the dog to the groomer and I have an appointment for myself Friday afternoon.  I have not been to the movies...alone, in I can't remember when.  I am going today!  

Red calls at 11:55 a.m.  "Mom...you forgot to give me lunch." 
Great!  I have to run over there to bring his lunch.  I throw on a pair of sweats and tell my mom, "I have to take Red lunch and then I have some errands." 

Off to the movie theatre I go.  No makeup, no shower...wearing sweat pants...but I made it!  In case you're wondering I saw "Extremely Loud and Incredibly Close", which of course makes me think about my husband and my children.  I cry...but at least, I escaped.  

Later that evening, I am doing my normal mommy duties, taking Blue to the library, running to the grocery store, running home to make sure Red eats and takes his meds, running back to the library to pick up Blue.  Making dinner for my husband.  Suddenly, my mom stops me in my tracks and says, "Are you hiding something from me?"

"What do you mean?  Like what? You mean my rendezvous with my boyfriend this afternoon?" HA HA! 

I never did answer her question.  The last time I checked...I was 46 years old.  Do I have to disclose my whereabouts to my mother, my husband and my children at all times?  I don't think so!

Wednesday, February 8, 2012

Adventures with the Shoe-Licker

I have been rather preoccupied with the child who has always commanded a great deal of attention lately. That doesn't mean that behind the scene...I haven't also been dealing with my "Easy" child's issues.

After school one day, the phone rings.   It's Blue on the caller I.D.
"Mom! Whatever you do...DO NOT PICK UP PHONE IF THE SCHOOL CALLS!"  He is crying and very upset.  "They are just going to lie to you!"

I try to get out of him what is going on, but when he's this upset, there is no getting through to the actual facts of the matter.  There is just pure emotion, vivid anger and exaggeration.  His anger appears to be directed at his Special Ed tracking teacher.  "She's MEAN!  And she's always getting in my business!  I don't need her help!"  Of course he needs her help.  He would not survive without it.

Shortly after we hang up the phone, Mrs. E. calls.  Apparently, we are still having adventures with the Shoe-Licker.  I have written about this before HERE and Part 2 HERE. The two of them  have supposedly been separated in the classrooms.  However, in the hallways apparently, they find their way towards each other.  This time the Shoe-Licker apparently pushed Blue and slammed his locker shut.  Subsequently, Blue sees him after-school and runs towards him...probably ready to knock the crap out of him, when his teacher screams to stop him.  She quickly redirects him to get straight into the car with my carpool partner...saving him from getting himself into real trouble.

When he gets home, he barrels out of the car running towards me...crying frantically.  He is angry.. yelling.  He is actually cursing!  Yes...this is my so-called 'easy' child.  He has been pushed to the edge.  Mostly he is afraid and angry because he fears that HE has done something wrong.  He is 'Student Of the Week'.  He is worried that has all somehow been ruined and of course it's all the Shoe-Lickers fault!

As the night goes on and he calms down...I start to get more accurate pieces of the puzzle --the story of what actually happened.  Allegedly, the kid taunted and threatened Blue and he did not back down.  He was threatening that he was going to shut Blue's locker.  Blue got in his face, tapped him and told the kid to get away from him.

The shoe-licker says, "Tap me one more time and see what happens!"
Blue taps him one more time.  After-all he TOLD him to do it.
The kid then shoves him down to the ground and slams Blue's locker shut.

So it turns out...Blue is very fearful about the part that he played in the matter.  Of course, I have no problem with it.  He didn't back down.  The Vice-Principle may see things differently.

We have a meeting with the Vice Principle and the Special Ed. Teacher the following day.  Blue tells the whole story, which of course is much easier to do when he's not in emotional havoc.  There is an investigation.  Blue is not in trouble.  The boys apologize to one another.  Finally...there is a schedule change.  Blue is no longer in almost every class with this boy.  I am hopeful that the adventures with the Shoe-Licker have come to an end.

The first day of his new schedule without the shoe-licker I ask, "So how do you like your new schedule?"
He says, "It's fine but...there's this kid who called my friend the R-word."

God help me.  Now he has to be the R-word police.  Let us pray. 

Monday, February 6, 2012

Extremely Loud and Very Close...

"Don't Push me cuz I'm close to the edge.  I'm trying not to lose my head."  --GrandMaster Flash

GrandMaster Flash
When I'm the midst of hell...it's difficult for me to write about what's going on.  Emotions run high...perspective is off kilter, my insides ...tide up in knots.

I have to keep moving...keep living, continue to take care of my family without losing it completely.  I am still the center --the brains that make all of the parts move through the universe, whether I feel up to it, physically and mentally or not.   This may mean that small details are forgotten.  Everything may not get done, but the important stuff  that absolutely has to happen gets taken care of.  Children will be fed, medicines dispensed, doctor and therapy appointments maintained.  Homework will be assisted, carpools will be driven.  Fights will be refereed.  I have to make it all happen.

I am forced to write things down sometimes in multiple places.  I set reminders on wall calendars, cell-phone alarms and to-do lists.  Otherwise...forget about it.  We'd all be lost.

I really think my pay grade should go up for all of the work that I find myself doing.  I should be paid as a doctor, a nurse, a pharmacist and medical research assistant.  In the past week I have researched more about medicine than I care to remember.  I have come to learn that you can not just trust the professionals.  That is sad and kind of scary.  What did parents do before the age of the internet?  Their kids probably ended up in mental hospitals because they couldn't figure out what the f*#@ is going on.  Sometimes the problem is the medication that's being subscribed.  Instead of helping, it is making matters worse.

So we're going through the god-awful medication changes again with Red.  Behaviors have been erratic.  Anger, depression and mood swings have been challenging and nerve racking.  It's really not a pretty scene when your child has grown into the size of a grown man, but still has the mind of a little boy.  He is 16 and going through all of the hormonal changes of puberty.  He is longing for the things that a typical 16 year-old longs for...yet, he has no idea how to get there.  Not to mention, he has the maturity of about a 12 year-old.

After the cursing out teachers and making verbal threats episode at school, I decide to take him out of school for a few days, until we can see the doctor again and get him to a little more balanced place.  He is home with me for 3 days of pure fun.

We see the Neurologist.  He puts him on a new med that I actually agree with --Invega   It is a new form of risperidal that is in an extended release formula and is known for less side effects.  It should help Red with his moods.  As usual...I am hopeful.  Of course, I am also...desperate.

Hubby and I meet with the school staff.  I find out that there have been some behaviors that are making another student, shall we say 'uncomfortable'.  Great! I'm freaking out about this.  This is a reoccurring issue that we have been dealing with since middle school.  I'm thinking if he doesn't get this behavior under raps...sooner or later we will end up with legal bills on top of everything else.  Of course there are a number of behaviors that we have to change if he will ever be able to live out in the real-world as an adult, without his mommy to protect and advocate for him.  I can't even explain how much this makes me sick to my stomach with worry.  He is 16!  I will not always be able to protect him from the world...or even from himself!

This most recent behavior means we are going to have to take the cell phone away so that he is not barraging people with phone calls and text messages.  We are going to have to take Facebook away from him for a while...as he is continually putting these inappropriate messages out there...sharing way too much information.  Laying this serious guilt-trip on his friends at school.   Basically, he is attempting to put the state of his mental-health in their hands.  'If people would be better friends to me...then I wouldn't feel so depressed,' is the gist of what he is saying.

He says he doesn't want them to feel sorry for him.  But obviously, what he wants is attention...however he can get it.  What he doesn't understand is how this is making other people feel and what thoughts they are having about him.   There goes that Asperger's mind-blindness.  He is laying this guilt trip out there which makes people who are trying to be a friend to him feel like, 'If I don't call, message and be there for him 110%, then he may hurt himself.'  What teenager can handle that responsibility?  And furthermore...why should they have to?

During this meeting with the school special education staff, we come up with a game plan that will keep Red safe and out of trouble, without totally confining him to home or one area of school all-day.  They will be keeping a very watchful eye on him until things settle down with these med changes.

In the midst of this sh*# storm, I do get a small blessing.  I don't know if it was God, the medicine or both.  When I have the conversation about the cell phone and Facebook with Red, he agrees ...on his own, to disable his Facebook account for a while.  He also agrees to delete certain phone numbers from his phone so that he will not be tempted to text message.  What's more...he doesn't even seem to get depressed about it.  I thought this was going to be a major fight.  It was so civil and mature, I was totally caught off guard...in a good way.

So despite all of the knots in my stomach, headaches, and sleepless nights, we made it through the week from hell.  The only thing I actually forgot to do during the week was to take Blue to his Art lesson.

Oh...and I never made it to my 'play hookie day'.  I haven't been to the movies in an absolutely sinful amount of time.  Having grown up in Los Angeles,  I am usually an avid movie goer.  Hopefully, I will see a few of the Oscar picks before the actual Oscar ceremony.  The movie I really want to see is "Extremely Loud and Incredibly Close" but then again...I can see that live and in living color, right here in my own home.