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Wednesday, January 30, 2013

High School Freak Show

"I thought everything was going great until I got dragged back into this Freak Show!"  ~The Avengers

This is the line Red said to me this morning when I woke him up for school.  He is still angry, sad and disappointed that his friend ...someone who he considers to be one of his best friends, un-friended him on Facebook last night.

The thing is ...the kid has Aspergers.  Red looks up to him and thinks he has this perfect life.  Red sees him as being popular.  Why? Because a lot of people speak to him every day.  The reality is that he has grown up as the son of a Pastor in this community.  Therefore, a lot of people know him.  What does that mean really? A lot of people reach out to him...some of it real...some of it superficial. A lot of people have high expectations for his behavior and he is often being watched, or has responsibilities simply because of who his parents are. Could that overwhelm him at times?  He's also taking all regular education classes, and maybe even some advanced classes.  What does that mean really? Perhaps, he is stressed out by the level of expectation or self-imposed need for perfection.  He has a girlfriend, which in Red's eyes is the key to happiness.  What does it mean really?  That's another relationship...another set of expectations...another layer of drama, perhaps. We don't know because we're not inside of his head.

We do know that he has Aspergers.  That he sees the world differently.  Things may seem bigger than they really are to him.  His view of things could be skewed.  He could have a great deal of anxiety.  Who knows?  Everyone is different!  Right down to the two brothers who live here in our house.  They are very, very different.  In fact, Blue's personality may be somewhat like Red's friend.

Blue is ridden with anxiety and misinterpretation of social cues.  A teacher busts him surfing on the internet when he is supposed to be reading a novel.  In his mind, she now thinks that he is the most horrible person ever! She hates him and wants to have him killed.  A bit extreme you think?  Yeah...but that's what he said to me just yesterday.

The truth is Red can be high drama.  Because of his social inequities, he gets into lots of situations with peers. He has lots of high and low emotions.  His friend probably feels a need to rescue him ...a lot.  That may be too stressful for him.  I don't know.  I can only guess.  I know that he is basically a good kid and I don't think he would do anything to hurt Red purposefully.  He is probably just drowning and trying to save himself.  Nevertheless, for Red ...this sucks.  Which means for me ...it also sucks.  As his mother of course, I feel his pain even though I put up the good front and try to paint the sunny side picture for him.

I had just talked Red down off of the bridge of self-hatred and anger about other situations at school.  I think I almost convinced him that my plan to have him engaged in positive scenarios and situations is to help him, not to treat him like a baby.

I tell him how he has been swimming in a big pool everyday,  when he walks through that high school trying to get people to notice him, hoping to find acceptance into a group of people who could care less about him.  How he is using every muscle in his body to swim in that pool and yet, he is not getting the results that he wants from his actions.  He is frustrated, and becoming angry because what he is doing IS NOT  WORKING!  It's like banging your head up against the wall.  I am trying to get him to change his focus so that he will not feel so frustrated.

I try to convince him that what he is looking for ...is not in that big pool.  Skulking around through hallways is not going to find you that good friend or special relationship.  That is going to be found in a smaller group, perhaps in a class or maybe the workplace.  Maybe he will find it at church.  He certainly isn't going to find it walking around through hallways, putting on a facade ...a fake personality, just so that he will be socially accepted.

"If you do find a girl and you're not being yourself...after a while...the truth of who you are will come to light.  And then what do you have? Nothing ...except the drama of breaking up with that girl. Be yourself and when you relax into yourself and love exactly who you are...the right relationships will come."

He softens his stance a bit as if he gets it --for the moment.  Until late that night, when he is supposed to be in bed.  I hear footsteps above me.  Why is he still awake? Well,  he's on Facebook and he finds out that he has been unfriended.  I'm really hating that he's even on Facebook at this point.

This morning as I drop him off ...I ask him, "How do you think you should handle this situation today?"
"Maybe I should wait until church tonight and talk about it there."
"That's a brilliant idea son.  That's exactly what you should do."

I encourage him to realize that whatever his friend is going through, please remember ...it's not all about him.  "Try to be supportive.  You can let him know that your feelings are hurt without cursing him out. That would only damage your relationship more."

I can only pray that he will keep all of this in mind throughout his school day.

The social world of high school feels like a gigantic cesspool that he is swimming in.  It is like this for so many kids ...or as he calls it  --a real Freak Show.

I can't wait to get him out of there...

Monday, January 28, 2013

Last Night's Prayer


This weekend was 10 times better than last.  Red spent the night with a friend.  Blue hung out with a friend.  Daddy (or as I call him these days Rico Suave) and I went on a date.  I call him Rico Suave because he has recently lost over 30 pounds and he thinks he's hot! And he is.  To top it all off...I took a day for myself and spent Sunday afternoon at a reasonably priced day spa, with my phone turned off.

When I turn it back on... of course, there is a message from Red:
"I had a really good time with hanging out with my friend last night and I really am looking forward to the field trip tomorrow.  So yeah...this was a pretty good weekend.  I hope you're having a good time wherever you are." Nice!

When I sneak in the house...all is quiet.  Unbelievably, the two boys are behind closed doors in Red's room, hanging out together.  There is no fighting.  I said unbelievable right!? This lasts until right before bed time.  I stay hidden in my room because who am I to disturb the peace? 

Blue comes in and tells me how "mean and old-school dad was today."
Red comes in and gives me every detail of his time with his friend.

One of the things he tells me ...I really did not want to hear --some foolish young boy's mischief they got into.  Honesty is not always the best policy.  Some details, a mother should be spared. I spared my mother a ton of details in my teen years.  I tell him that the behavior was on the immature side and that I hope he will make better choices in the future.  Well...what did I do that for? This completely changes his mood.  He goes over to the dark side.  He's feeling bad about his choice, but also a little defiant at the same time.

When I go to tuck him into bed (yes he is 17 and I still tuck him in...we call it My Time.  And most nights he will not go to bed without it.)  He is going off on a dark negative path of thoughts, which he has to verbalize.  I want to run screaming out of the room.  He begs me not to leave.  He wants to talk...he wants me to engage all of this negativity.
I tell him, "I will stay if you want to pray. Other than that...I'm leaving."
Prayer is a language that Red understands and respects ...much more than anything that I can ever say to him directly. 

He chooses to pray...

Dear Lord,  

We thank you so much for the blessings of this weekend. 
I am especially grateful for the time I got to spend by myself to help me relieve so much stress that has been building over these past few weeks.  
We are also thankful for the time that Red got to spend with his friend, and for all of the true friends that you have blessed him with over this past couple of years.  
There was a time not that long ago, when he didn't have as many real friends in his life that truly care for him and accept him for exactly who he is. 
 (I then list every friend) 
Thank you for all of the adults in his life who love and support him 
For the teachers (I name them all) 
and especially Mr. M -who came to our house this weekend, just to bring Red the field trip forms 
He told Red that he can call him anytime he needs to talk.  
What a blessing he is. 
We thank you for the field trip that he will go on tomorrow, where he will be in a role of leadership ...helping others with disabilities.  
There are many kids who don't have the support or positive direction that Red does.  
They are out there floating aimlessly, being teased and harassed.  
Some of them end up wanting to hurt themselves because they feel so helpless.   
Help Red to see how blessed he is by his support system, and not to see it as some sort of restriction. 
This support helps keep his mind engaged with positivity. 
He is busy helping others who look up to him, and who really care about him instead of spending time focusing on those who don't care about him at all.  
Please keep him focused on the positives in his life...for you have given him so many."

With this prayer he turns to me, smiles and asks for a hug.
The negative vibe is gone...at least for the moment. 

Thursday, January 24, 2013

Wrangled Those F*#%ers!


In these days of bullying, school shootings and negative images of Aspergers in the media ...schools are looking at security and their liability, before they look at what is best for the child with the disability.  In fact, even before this era...often times they do what is best for them or what is easiest, instead of what is best for the child on the autism spectrum.  School administration is worried about budgets and staffing issues, test scores, school funding and not always at what is really the best thing for the child who is different, who causes them more work. If you are not paying attention, you can best believe that your disabled child will fall through the cracks.

Unfortunately, Red does not have the full capacity to advocate for himself.  He is 17...but doesn't have the mentality of a 17 year old.  He doesn't know what's best for him.  He spends so much of his time fixating on non-essential matters that he doesn't have a whole lot of mental energy left over for anything else.  He can and will speak up ...however I have to be his advocate.  I have to be the voice of reason that he doesn't have the ability to be right now.

Red is a 17 year-old, black male with Aspergers.  He stands about 5ft. 10 or 11 and weighs at least 200 pounds.  He attends a school where he is definitely a minority.  He has a behavior pattern  --when some one treats him nicely,  he sees them as a good friend...he gets fixated on them or their group of friends because he wants to be a part of the in-crowd.  He wants to be loved and accepted.  His intensity makes them feel uncomfortable and then they reject him. Then the fixation grows deeper.

He may start to behave in ways that make peers feel even more uncomfortable.  He may be looking at them from across the room ...glaring.  He may approach a crowd and then not say much...which to them looks weird.  There may even be days when he slams his hands on a table, against a locker or a slam a door because he is feeling angry and rejected.  Then he posts these feelings of anger and rejection on Facebook.  F-life!  Everyone hates me!  I'm so F -ing angry.  Nobody understands me etc.

Has he ever been directly aggressive? No.  Has he ever put his hands on another peer inappropriately? No. Are these behaviors a direct result of his disability? Yes.  Absolutely.  Does this behavior need to be addressed and modified? Most Definitely.

We have tried many things to curb this behavior --social stories, social skills classes and groups, individual therapy, prayer, talking with his pastor, talking with his real friends, and male family members.  Is he connecting the dots?  So far ...the answer would be a resounding no.

The school is becoming exasperated with the behavior an the fixation because it involves other students.  One of which is a young princess who cries every he looks in her direction or she sees him in the lunch room or the hallway.  He has said and done some things to make her uncomfortable in the past.  When he was told to stay away from her completely ...he did.  A few months later she comes up to him and says, "You don't have to totally not speak to me.  I mean we can still be nice to each other." They become friends again ...then he does something to weird her out.  And it's on again...she is back in the AP's office crying about the big, bad, black, angry looking wolf!

What should the school be doing?  Trying to create a more inclusive environment...educating students about tolerance and inclusion.  When they see a student who is depressed, lonely and different create ways to make them feel better about themselves instead of vilifying them ...creating some one who is increasingly angry and misunderstood.

I am sick of them calling me about this.  I am sick of him giving him  consequences  because of this particular peer freaking out.  Does his focus need to change?  Absolutely!  Is the way to do that by isolating him and continually giving him consequences that he sees as negative? No!  Is any of that changing the fixation? Absolutely not.

When we meet yesterday ...it is their idea to put him in a more isolated area so that he doesn't cross paths with this group of peers at all?  Nah!  Sorry y'all!  That's not going to work for me.  He has a right to be in the hallways and lunch room as much as anyone else.  I'm sorry if his mere presence from across a room makes you uncomfortable.

What we are going to do is create a situation to get him involved in a positive activity so that he can break this pattern of fixation.  For the next two weeks...he is going to be placed into a role of leadership socializing in the mornings before school with the kids with more severe disabilities who he already helps during a class period.  They know him ...they love him...they look up to him.  He can other wise to hang out in his first period class where there are also some good friends that he interacts with well.

I sell this to Red as this is a way to start off your day feeling good about yourself, instead of walking around aimlessly, focusing on peers who don't really give a crap about you.  This will change your focus and make you feel good about yourself.  I asked him to trust me.  "I am on your side.  This is just like the social skills group you didn't want to go to because you were scared.  It was different.  You didn't think you would like it. But you thrived and made some real connections with people that you maintain to this day."

He will continue to go to lunch and have time to socialize with peers during that time.  I asked him to focus on the peers that he knows well and who reach out to him.  "You are not to go up to that group of peers who never approaches you...at all!"  He agreed and seemed to understand.  

I also told the staff if he tries to engage about this particular student, your response should be to redirect him. The script will be "We are not going to talk about that.  Who can you hang out with  or what can you do to make yourself feel better?"  There will be no back and forth dialog about this particular peer and what he thinks she is doing to make his life miserable.  The dialog will be about what can YOU do to make your life better.

I put together a plan and a solution without even really giving them a whole lot of input.  I wrote it all down in black and white.  And this is how we are going to roll for the next two weeks.  We will see how it goes.

And guess what?  I'm not done yet.  

Tuesday, January 22, 2013

Venus & Mars Parenting on Earth

When God created mothers and fathers...mars and venus raising a child here on planet earth ...I suppose the hope was that the two totally opposite beings would somehow balance each other out, the result being a well balanced child who grows up to be a successful adult.

The truth is in the trenches ...it's hard as hell.  I know this isn't my original thought, I'm sure I read or heard it somewhere, but I can't remember where. Anyways, I wrote it as a facebook status a few days ago...
"Raising children is about the most unromantic thing a couple can do together."
Some disagree with me and that's o.k.  Apparently, they don't have my kids.  Don't get me wrong...I think having a baby is romantic.  Hell...babies are romantic.  They smell good.  They smiles are so pure.  They don't talk.  But eventually, they grow in to teen-agers and there is NOTHING romantic about raising teenagers.  I would venture to say ....raising teens on the spectrum makes it difficult to the 10th power.

Say you get married in your twenties.  I was 28.  I had absolutely no idea who I was as a person.  I don't know ...maybe my husband knew who he was.  He had been married and had a five-year-old son,  so he had some idea of what it meant to be a parent.  Neither of us knew what it would be to parent children with special needs.

I had a real romanticized view of what marriage and motherhood would be.  I raised my step-son for a while and before I knew it, my first-born turned into a terrible 2 toddler, whose language we did not understand and the next thing I knew it I was pregnant again.  As we moved into my second pregnancy, we were starting to realize that my first born (Red) ...was not quite developing as he should be.  I had never imagined the possibility of raising a child with special needs.  It wasn't a blip on my radar.

Cut to now...my stepson is out of the house at age 24 (but he still has not grown up).  We have two teen-age sons at home who are on the autism spectrum.  They are stubborn as hell.  Who knew??? Right? Dealing with their anxiety, depression, hormones, defiance, rebellion, autism thought processes and generally pain-in-the-ass adolescence...is a bit much.  Raising them is stressful.  Disciplining them is hellacious.  All of this is intensified when parents are not on the same page.

It's really hard for me to share the duties of parenting with a partner who doesn't do everything the way I would...who in fact, doesn't do anything the way I would.  (insert sarcasm here) I am their mother...of course I know best right? I read all the books, go to all of the therapy sessions, go to all of the school meetings, sit down with all of the counselors, do all the research, read all the books.  I like to use what I've learned to raise them with discipline, yet at the same time, I would like to create an hora of peace in our home.  I can not stand the constant arguing, yelling and screaming.  The boys are often out of control because of their fits of anger and meltdowns.  It is important for the parents ...the adults, who are supposedly not on the spectrum to try to remain calm and in control.  So of course my way is the right way? Right???  (Hubby would emphatically beg to differ.)

Remaining calm isn't always possible.  We are human.  When someone is hammering you with negativity all day you are going to loose your shit every once in a while.  But when you discipline out of anger and frustration ...you are more likely to say things that you don't mean ...things that can be hurtful and damaging to the child whose self-esteem is already in the crapper.  If at all possible, we should take a step back, catch our breath and come back and deal with a situation with calmness.  This is the ideal.  Of course, this will not happen all the time.

Hubby is straight from the old-school.  He has been to some therapy sessions, school meetings, etc.  Has he read very much about autism, discipline and meltdowns?  I don't think so.  He may say otherwise.  But there is always 3 sides to every story.  Maybe one day he will share his with you.  In my opinion ...he wants to parent the boys the way he was parented.  (As if that worked so well.)  Of course, he is a male and is naturally more aggressive and doesn't sugar coat anything.  It's just unnatural for him to use a calm tone of voice when the kid is bucking up with anger, and disrespect.  There is a lot of alpha-male crap going on as well.  Let me show you loud and clear who is boss around here.  At the same time, the boys are becoming young men, who have their own very strong thoughts and feelings although they don't always make sense to us.  And because of their Aspergers, they sound very blunt and don't filter things especially when they are upset, which can feel like blatant disrespect.

My mother screamed at me all the time.  If I parented the way she did...I would be in the nut house.  My husband was parented in the old-school...I'm the parent...you're the kid...do what I say or you will be spanked method.  He parents with a certain level of in-your-face, I'm-the-boss kind of strategy,   which usually leads to even bigger fireworks in our house.  I can't stand it! And he can't stand my Mrs. Softy coddling the boys (as I'm sure he sees it) way of doing things.

What we really need is an outside source ...a therapist to help guide us.  To help us to meet somewhere in the middle of parenting and discipline that is creative, thoughtful and effective.  He doesn't want to listen to me...and I sure as hell don't want to listen to him.  This causes thick as a brick wall tension between us where there would otherwise be love.

Who thinks of all of this crap before you actually have children? This crap is hard!

As a couple we are awesome together...we compliment each other's strengths and weaknesses.  He is loving and sweet, and he loves to spoil me whenever he can.  He is a good provider.  We have such a good time when we are alone together.  We both love to go to concerts, dine in fine restaurants ...we especially love to travel together.  We are also opposites in many ways.  All in all...I think I chose a wonderful mate.  I know that he loves his children.  He has stuck around although, I'm sure there are times when he wants to run screaming...as do I.   If we could only take the stressful parenting aspect out of our relationship ...things would be so much more simple...not reality, but simple.

People think I'm crazy when I say ...sometimes I wish he could just be my boyfriend and baby daddy. You know ...I'll send the kids to you every other weekend and a month in the summer. That way you can parent them your way and I don't have to watch and vice versa.   We could get together once a week for dates and take vacations together.   That may be a little dysfunctional ...but hey!  You never know...it could work. 

Thursday, January 17, 2013

Carpool Conversations


I could use this post to tell you the depressing story of how me and Red went through 3 therapy sessions in one day, one with the School Psychologist, another with the Psychiatrist and one with the Behavior Therapist.  How Red did a great job of processing through and accepting responsibility for his behavior with all of these professionals ...only to totally dump on me all the way home in the car back at square one.  Square one ...where he goes back off the deep end like he doesn't get it at all and he starts blaming everyone and their mother for why he got into trouble at school.

I could tell you how I completely lost it in the car as I listened to his bullshit, thinking about all of the time, money and effort I am putting in to helping him only to have him dump on me as if I've done nothing. (I know this isn't really about me ...but still.  I can only take so much.) I could tell you how I laid into him in the car --pulled up to the house and told him to get out so that I could leave because I couldn't take another minute of his negativity.  How he walked into the house and slammed the door so hard that one of my pictures fell off the wall and broke.

I could tell you how his father barreled down the stairs and took over where I left off laying into him about his behavior to the point where my mom thought he might have a heart attack.  Then Red goes up stairs and puts one of those F*#% this and that statuses on Facebook.  How it was so bad that relatives started calling us to find out what the hell was going on.

I could tell you how my brother called from California and talked Red down ...back to reality.  He tells him how much his entire family loves and supports him and how he should be grateful for all of his blessings.  How Red then takes the F*#% the world status down from Facebook and apologizes to all of us.  And how so many people came out to support him on Facebook and via phone calls to let him know that they have his back.

But all of that would be so boring.  It would be so --the norm for us...and you've heard it all before.  So instead, I will tell you how life is looking up again and how funny this conversation was on the way to school today with Blue and his middle school friends, who are also on the spectrum.

One of the twins has been down in the dumps lately about a girl who is not responding to him the way that he would like for her to.  All teens have these girl issues.  I've been through this before with my typical son. The difference here is  the fixation aspect, and the lack of communication skills to actually get try to convey how they are actually feeling about the girl.  Their is this tendency to want to skip from A to Z without all of the steps in between.  If the girl smiles at them, and is cordial they think this is a cue that she wants to be his girlfriend.  He is sad, because he really would like this girl to be his best friend and/or girlfriend like yesterday and that does not seem to be happening.  He is also really sad about the fact that she is also friendly with so many other boys and takes it very personally.

When we are carpooling, I try to keep the chatter light and cheerful, hopefully taking his mind off of his worries during our travels.  This doesn't always work.

Blue -Are you guys going to spirit night at the high school tonight?
Twin 1 -Yeah...I kind of forgot about it.  But I guess so.
Twin 2 -What electives are you going to take?
Twin 1 -I don't know...maybe football.
Me -Football? What about band? (The twins are both in band now.)
Twin 1 -I don't know.  Maybe I should play football so...you know...I can get some bigger muscles.
Blue -You don't need to do that.  Why are you doing that?  To get girls?  You don't want the kind of girls that want you only for your muscles.  That's not the way to get girls.
Me -Well...it is one way.
Blue -Mom!!! I'm talking to my friend.
Me -I'm just saying.
Blue -If you play football you have to act stupid and all cool and not be yourself and that will not get you the right girl.  Trust me...I know what I'm talking about.
Me -Not all football players are stupid.  I had many friends who were football players in high school and they weren't stupid.
Blue -Mom ...we're not talking about 50 years ago when you went to high school!
Wow! I'm not at all insulted by that.
Twin 1 -Remember what we talked about last night? Keeping the peace with your mom.
Blue -Yeah...but she makes it hard.
Last night Blue ran away to the twins house because he says there's too much fighting in our house.  Now of course -the fact that he can't mind his own business and always has to have the last word has nothing to do with that right?  I mean ...it's all our fault....everyone except for him. 
*I hope you all get my extreme sarcasm here. 
Twin 1 -I think it will be good if I get more muscles.
Blue -You're not going to get the right kind of girl doing that.
Me -What about band?  You're really good at playing your instrument.  There may be lots of cute girls in the band.
Twin 1 -I doubt it.  Not the right ones.
Blue -Mom! I'm trying to talk to my friend here. Believe me I know what I'm talking about.  Because afterall...he has all of the girls right?  I mean he has so much experience.  Me? I was just born yesterday ...I mean 65 years ago because I went to high school 50 years ago...according to my son. 
Me -Oh.  Sorry.  I forgot ...I don't know anything.  I'll stay out of it.

Luckily for them, it is now time to get out of the car.  We're at school --where Blue ...Mr. Know Everything can now hold class without me interrupting. 

Tuesday, January 15, 2013

2 Steps Forward -Punch in the Gut


Ugh...punch in the gut. You know that feeling when you get those butterflies...that nervous, anxious sensation.
Great...he's done something again.
Something that has gotten him in trouble.
Something that I will have to get him through.
Something he will have some consequences for and I will have to deal with the fall out.
Something that he will feel bad about after the fact and thus his self-esteem and self-loathing will take another hit.

I arrive at the high school to pick Red up for his regular Monday, therapy appointment. I pull up to the portables where he should be waiting for me.  He's not there.  His regular special education teacher is not there either.  A beautiful, female teacher comes to the door and says hello ...as if she knows who I am.  I don't ever remember seeing her before.
"Hi I'm looking for Red."
"Oh...he's in the A.P.'s office with Mr. H. He had a bit of a melt and Mr. H. called me to come over and cover his class."

Great! This was the punch. Ugh! You see...I had been floating through the day thinking all was relatively well and now...this.

The boys have been going at each other a little more than usual lately...if that is at all possible.  Red has been more impulsive.  Blue -a little more anxious because it's the first week back to school.  Neither one of them seem to have the capacity to mind their own business.  And they both seem to feel safe taking out their feelings about the rest of the world on each other.  Silly me, I scheduled therapy for both of them back to back.  Blue is scheduled to be picked up 10 minutes later for his appointment.  In fact, I have already called the office at the middle-school to have him come down and meet me.

I have to go to the Assistant Principles office to retrieve Red.  I can hear his voice from outside the door.  He is agitated.  I go inside and listen to much of what is non-sense spewing from him.  The A.P. gives me the run down of what took place according to statements.  Blah blah blah, blah blah is what I hear.  I've heard it all before.  It's the same kind of crap that I have been dealing with since middle school.  Perhaps even 5th grade.  When will he ever get it!?  This is what I am spending hundreds of dollars in therapy for and he still doesn't get it!

Sure things are better.  He is a little more in control than he used to be of his anger.  At least now he's not yelling and cursing at people (well not often) ...but his behavior and social skills are still behind the curb.  He is so angry that on the way out of the building he slams the door open.  I am coming out of the other door.  If it weren't for my quick reflexes the damned door could have knocked my glasses into my face or broken my freaking teeth!

At this point I call the middle school and tell Blue to go back to class.  "I'm sorry but your brother is having a near meltdown over here and I don't want the two of you in the car together."
"O.K. I understand."
I have to cancel his therapy appointment.

I won't get into the details of what exactly happened with Red. Let's suffice it to say it has to do with
-being impulsive
-misinterpreting social cues
-wanting to feel included in a group and feeling left out
-wanting to feel loved an accepted but going about it in the wrong way
-not connecting the dots as to how some of his behaviors can make other people feel
And at this point I am weary that he may NEVER be able to connect those dots.

High school can be torturous for a lot of kids.  You don't know who you are.  You're just trying to fit in.  For him ...torture is putting it mildly.  High school for my Aspie is like an alien world where he has no idea how to relate to it's citizens, who by the way, speak another language.  He tries to speak the language but somehow they still don't understand him.  They know he's from another planet and most of them do not accept this foreigner into their culture.

He has taken so many steps forward in the past year.  His conversation skills have improved probably by 90%.  He is taking Theatre Arts and I think he has learned to play the role of having socially acceptable and socially "expected" conversations.

He has become very close friends with another young man who is on the spectrum, who seems to do very well socially.  Through this friend, Red has started going to a new church where there are many peers from his high-school and surrounding area high-schools.  He has gotten pretty good at "playing the role" of a "hard core" Christian.  I am sure that his faith has been strengthened and he really believes in trying to follow the example of Christ.  At the same time, I think that he sees this role as a way to make friends and influence people.

You see before, he didn't know what to do or say...what to talk about.  Now he follows the Christian script.  That's what he does...he follows scripts --using words from movies, t.v. shows or from other people that he is impressed by.  It used to be his older brother.  In fact...he still hangs on to some of his lines.  He thinks his brother is so cool and after all ...he knows how to get girls.  They may be the wrong girls...but they are girls nevertheless.  Sometimes he uses the lines of his father, especially when he is trying to correct his younger brother.  Lately, he sounds very much like his new Christian friends.

Yep he's playing a role because his own personality has not gotten him very far socially.  How hard must it be to not be able to be yourself all day long?  How much energy that must require.  Not only that...he is looking for a rather instant payoff.  By smiling and being socially appropriate ...he is looking for girls to come up to him and like him, hug him...maybe even want to be his girlfriend.  I mean why not?  He is good looking, dresses nicely ...he is playing the part of a totally cool kid.

He wants people to totally forget about the negative, angry, intense person that he used to be, not all that long ago.  That person whose ugly head still comes from underneath the surface occasionally.  Forget about the barrage of negative, angry messages he put out as his Facebook statuses, when he is angry ...talking about how his life sucks and F*#% this and F*#% that!

Now I'm a nice guy! Can't you all see that?!!! Like me damn it! I want to be popular.  Oh yes...he's actually reading articles on the internet about how to become popular ...as if there is really some magical formula that gives you charm and charisma, that makes you funny and endearing.  I mean maybe there is even a magic pill for it!

There has been a lot of positive feedback from his new attitude.  There are a lot of people who smile at him and say hello, they exchange cordialities.   The kids that he helps with more severe disabilities absolutely LOVE him.  He does have more friends than he has ever had in his life.  And I'm talking about good friends ...the ones who know the real him and reach out to him and hang out with him on a regular basis.

Unfortunately ....he seems to have his eyes set on this particular core group of kids who look like they have it all.  They look like they are having the most fun.  They are certainly the prettiest girls and he actually knows some of these girls from his past and they are nice to him.  But they are not skipping from A to Z to go out with him or be his best friend.  He seems to have no idea what's supposed to actually happen between A and Z in order to build a relationship with someone of that nature.  Despite the social skills classes and therapy.

When he is putting on this super nice guy performance and he doesn't get that instant gratification ...that pay off that he's looking for...that desire turns in to anger and self-loathing --exacerbated feelings if .. they don't think I'm good enough...I must not be good enough.  I will never be good enough! 

Then we have the impulse control issue....going up and saying something inappropriate or doing things that may others feel uncomfortable...that component of unexpected behavior.  Then the next day or the next week ...he is surprised somehow that everyone is not going to turn around and be his best friend as a result of his own behavior.

We also have the lack of perspective and self-responsibility.  When they don't show him that expected pay off of best friendship or he gets into trouble because of some unexpected behavior...it's all their fault.   If  they just tried better to understand him, or if they just knew, what he goes through and how sorry he is.  All he wants is to fit in.  That's all he is trying to do.  Why is he then in trouble for just trying to make that happen?

It's ironic is that one of his favorite scripts that he says to his brother at least 3 times a day is, "You need to learn how to take responsibility for your actions!" Yet ...he seems unable to do that himself.

Now ...he is a perfectly nice kid...in fact,  just the day before this punch in the gut  --a teacher is crossing a parking lot to say to me...
"I just wanted to tell you that I have been at this school for 15 years ...and I have never seen such a breath of fresh air as your son.  He is so kind and he has made just so much improvement in the past year.  He's just incredible!  I would have to sit down with you and just make a list of all of the wonderful things I see him doing."

This was less than 24 hours before I picked him up to find out he was in the Assistant Principles office.  Yes ...it felt like a punch in the gut.  It took the wind right out of me and left me feeling completely deflated wondering will he ever get it?  Will he ever connect the dots?  Will he ever be able to make it in the real world because despite his gifts and abilities his social inequities can end up just blowing him out of the water.

I try my best to remain positive ...but when you get punched,  it takes you a few minutes to just feel the pain, maybe even cry so that eventually, you can catch your breath. 

Friday, January 11, 2013

Another Aspergers Mom


Editorial Note: This post is written by an Aspergers Mom I met through my Confessions Facebook Community.  She has been experiencing some really difficult times with her son.  He is now 18 years old ...an adult, so he is even more difficult to manage.  She can't be sure if he is taking medication or not.  He is big, and strong and can not be made to do anything.   Everyone's journey is different.  Her experience is different from mine but I'm sure not all that different than many other parents.  

I keep an open mind and never discount the feelings of other parents raising kids on the spectrum.  I do not judge their thoughts or feelings ...because I don't march in their shoes.  If you line up a group of Aspergers kids ...each and every one of them will be different.  That is why it's called a spectrum.  I see that in my own life with two children with the same diagnosis, who could not be more different.  

Today I share her thoughts with you.  It's raw and it is the reality of this Aspergers mom and many others... 

Aspergers Awareness Moment

I love and adore my son unconditionally but autism has cruely robbed us of who my child used to be and what he could become.


I remember him as a giving, loving, intelligent, affectionate and happy child. and then I started noticing things that were not normal, things that were against his nature....so I took him to countless of doctors.  They all told me different things, none of which I accepted...until I read about Aspergers. 


Aspergers is cruel and mind boggling, it is never ending and there is no cure. 


Everyday that we have to walk on eggshells to prevent meltdowns in which he can break windows, mirrors and china cabinets with his bare hands and even worse, harm himself because he gets so angry at himself for losing control.

You see he has no choice in the matter...once he loses it...Aspergers takes over and he becomes an obsessive, selfish, impulsively violent man-child and honestly...it is scary to watch.

Everyday I dread the phone ringing in case there is bad news about my son

Everyday I worry is today the day he goes over the edge?

I try to see his soul.  I think back to when he was a baby when he was all those loveable things.  I hold on to those memories for dear life.


I need to...in order to cope...to give him encouragement...to praise him everyday and to love him.


Everyday I hold on to those memories in order to stay strong for him.  I wonder if those things are deep within him buried deep down inside and no one can reach them...not even him. 


It's difficult to watch him beat himself up over the times he loses it. He knows what he does is wrong and hateful and he feels so bad afterwards.


He struggles to reach in deep to find himself as he used to be...to remember how he used to be. But he cant find himself.  He is lost to Aspergers.


So you see autism can be cruel.


I try to look at his soul and the way I do that is to remember him as a baby everyday to get through another rollercoaster day of uncertainty and fear. 


So now you know why I hate aspergers with all my might. 


I want my baby back. I want to be affectionate with him, to praise him to show him love...yet he doesnt feel these things, they are lost to aspergers. 


I want him to hug me back, to give me a sunshine smile like he used to.


I want to hear him say I love you mom without being prompted. 


I want him to feel emotion, to be happy with himself, to achieve new goals. 

I want him to live without fear and embarrasment because he knows he's different.  He longs and tries to be like everyone else and it hurts to watch him not succeed.  


It hurts to watch other kids make fun of his efforts to fit in. 

It's hard to watch adults stare at him without compassion, wondering what the hell is wrong with him. 

I wonder what will become of his future.


I can guide him and teach him but I never know when Aspergers will come to rob us again of
another step forward. 


This is why I HATE autism and Aspergers. It has taken my son away from me and those who love him. 


I love him without question...unconditionally, but I have to remember who he really is...that sweet innocent baby that I held in my arms not so long ago. 


So no...I do not feel blessed to have been cruelly robbed of my son. 


I have learned so many things...but I have also experienced such deep heartache that its difficult to breathe sometimes.

I feel hatred  towards Autism and Aspergers.


~Another Aspergers Mom

Thursday, January 10, 2013

Blog Book Tour

I was fortunate enough to be asked to review the book the children's book "Spaghetti is not a Finger Food and other Life Lessons" by Author Jodi Carmichael last month for Little Pickle Press.  Today, I am pleased to have the privilege to interview the arthur as a part of the Blog Book Tour.

In Spaghetti the author uses humor and vivid imagery to take the reader through an elementary school day in the life of Connor (the main character)  who appears to have Aspergers.

As a mother of two boys on the spectrum, reading the story reminded me of many of the stories I would here  from my own children each day about the challenges they faced during their elementary school days.

Jodi tell me something most people don't know about you? 

I have ADHD, with a side order of anxiety. I was only recently “officially” diagnosed, but I’ve had my suspicions for quite some time. A friend of mine, about 5 years ago, gave me some ADHD pamphlets and suggested I would find them interesting. When I read them, I said, “Oh my gosh – this is me!” All she said was, “I know.” 

I guess there’s truth to the saying, “It takes one to know one.”

Have you always had a love for writing? 

Yes, I have. When I was in 7th grade I wrote this long, dramatic novel for my classmates. Every few days I’d read the girls another chapter. It was called, “Too Young to Die.” It was about a boy dying of cancer. They loved it. 

I remember the teacher rolling her eyes and being highly critical. It was crushing and I pushed my writing dream aside. After the encouragement of my mom, who enrolled and paid for my first online writing course I started writing again. That was eight years ago, and from the moment I started, I’ve been hooked.

What inspired the idea for this book? 

The main character Connor woke me up, just before midnight on Boxing Day, 2007, telling me all about his day at school - in detail. I zipped downstairs to my computer where I madly typed all he had to say. It was the coolest thing that has happened to me as a writer. I later turned, what I call “Connor’s Rant,” into a chapter book. 

I have ADHD, so some of his personality is a bit of me, but I also did a lot of research to make sure his characteristics were a true reflection of a child with Asperger’s. And then to make doubly sure I was correct, I had two child psychologists review my manuscript. 

What did you hope to achieve by writing it? 

I hope it will bring understanding, compassion, acceptance, and inclusion for people with Asperger’s. I hope it will give kids on the Autism Spectrum a thrill to see someone they can relate to, triumph, and become the king of the school. 

As well, I have absolute zero tolerance for bullying. Often kids that display “different” behaviour at school quickly become targets. My hope is that if kids understand why their classmates are acting differently or unusually (and if we get to these kids at a young enough age), we can nip the teasing and bullying in the bud.

Is Connor a fictionalized version of someone in your life? 

Yes and no. He really is his own person – in my imagination and now in eBook form. However, I seem to be a magnate for kids that are different or are having trouble fitting in. I’ve done a lot of classroom volunteering and have recently taken a position as a school secretary and we are just drawn to each other. Having ADHD, I think helps. I just “get” those kids.

Did you ever actually follow a child on the spectrum through a school day or did you come up with these scenarios based on stories your own child told you?

No, Connor told me his day and then I imagined the details, using his “voice.”

In your research for the book did you find such a supportive staff in an elementary school like Connor had in the book i.e. the principal and Ms. Rossetti? 

I think most schools strive to be the best they can be – with strong staff and leaders working together to provide every possible support they can for each student. My experience with my own kids has been outstanding. As well, the school I work at is phenomenal and I feel privileged to work there. The teachers, the resource team, the administrators are all caring, loving, and supportive.

With Spaghetti, I wanted to showcase the best of all teachers, because that is what we all want for our kids and what every child deserves.

You seemed to really get inside of Connor's head to let us see how he processes thought.  How he jumps from one idea to the next.  How were you able to do that? 

Every writer has their strengths and weaknesses. I am very good at “voice” – telling the story from a character’s point of view. I struggle more with plot. I think a bit like Connor as well; I have a lot of thoughts bouncing around my head. All. The. Time. That’s what makes writing a great outlet for me.

What will your next writing project be like?

I have a few on the go! One is a YA Romantic Comedy, called Who Needs Romeo – A Tale of a Modern Day Juliet and I was recently accepted into the Manitoba Writer's Guild's Sheldon Obermen Mentorship Program as an apprentice.  With my mentor, Carolyn Gray, I get to work on Who Needs Romeo intensely for the next 5 months.  We will focus on my arch nemesis - plot. 

My other project is a middle grade book and I’m in the research stage. It’s based on my Grandfather, who was a fascinating man. He was a genius, but didn’t speak until age 7; a Rhodes Scholar; Studied Law at Oxford; and a pilot in the RAF out of London. When asked what he did in the war, he only replied, “I ran rum for the Queen.” His war records keep getting sealed. The war ended nearly 70 years ago, which makes me ridiculously curious. 



What happened? Why can’t we know? What if three kids discovered the secret? 

I can hardly wait to get started…

Where can we find more of your writing?

You can follow me on my blog Writing And Other Life Lessons

Jodi Carmichael, Author

You can get your own Kindle downloadable version of Spaghetti is Not a Finger Food  by clicking Here

To get more information about this and other books available from Little Pickle Press click HERE

Monday, January 7, 2013

Mommy Meltdown

Editorial Note: This is a post was previously published about 2 years ago.  It is basically What to do during a meltdown and also what NOT to do.  I received a comment on this post today from a Mom who said this helped her get through a tough morning with her son.  I hope it helps you as well...

~Karen

A few months ago I attended a parent training on how to deescalate a meltdown in a child with autism and other special needs behavior issues.  Well this morning all that training went straight out the window.  I did everything I wasn't supposed to do as Red was building himself up into meltdown mode.  The result was spontaneous combustion.  It was like adding flame to the fire in order to put it out.  Somehow,  that never works.

I've just been so sick of his disrespectful attitude and part of me believes he should know better by now.  I mean no matter how many times you yell, scream and become obnoxious, it is not going to get you what you want.  If what you're doing is not working for you...don't you think you should try something else? Well that would be logical and Red in his animated, fixated, meltdown state is anything but logical.

This morning he started in on me about having a friend come over for the day.  He immediately sabotages his chances by telling me that I'm mean and unfair...loudly, more than once.  I was done.  I swiftly told him that it was not happening, no friend would be coming over today, and if he kept going he would loose another privilege.

He felt like he'd already lost the battle of getting what he wanted, so why should he stop?  He kept going and going until chairs were on the floor and a closet door was being run into and pounded with his fist. Privileges?  Lost, hasta la vista, sayanara, adios!

In this middle of his antics, he informs me that he has seen meltdowns worse than this at school.  I don't give a flying u-know what, what he's seen others do at school.  This is not acceptable in my house.

I lost it!  I started to hear Bill Cosby in my head, "I brought you into this world...I can take you out!"  I remembered once hearing an African-American mother say, I believe it was on Oprah, "You always have to make your kids believe that you're a little bit crazy!"

I felt in this instance, I had to let him know that I wasn't taking any crap from him just because dad wasn't home.  I don't usually go there...but I went there. Wrong answer mom.  This kid has autism.  In the moment, I completely lost sight of that.

What started off as manipulation, and his regular bitching and moaning, was turning into a meltdown. Now there are many things I could have done at this point to keep this situation from escalating.  Once around this point, I just gave him a big hug, which completely threw him off, and stopped him right in his tracks.  I didn't do this this time.  I was too pissed off --too emotional.

If dad was here, by his stature and the mere sound of his voice, he would be able to move Red into the safety of his room where he could destroy his own crap.  Unfortunately, Dad is not home and Red is in my living room where there are many breakable items.  What do I do?  I grab a belt, not really having intention of having to actually use it, but to make him think that I would in order to get him into his room.  Again -wrong answer mama.  When he wouldn't move, I had to make good on my threat.

Now -I know that I can't really hurt this boy who is twice my size.  So what I was really doing was making him feel like he was under attack  -that his back was up against the wall...literally.

That is exactly what I was instructed during my training NOT TO DO!!!

Here is what you're supposed to do during an Aspergers meltdown as the educated adult:

1)  Remain in control, when they are loosing control, in hopes they will respond to your calmness.

2)  Empathize with them, let them know you understand how they must be feeling.  (Even if you don't agree with it.)
For example:  "Are you feeling _____? What are you _____ about?  So you're feeling _____?

3)  Keep your voice soft they will be more inclined to listen to you if you're speaking softly.  Don't be antagonistic.  i.e. telling him you don't give a flying -you know what.  (I didn't actually say that, but I did say a barrage of other things and used a few curse words to highlight and put an exclamation on my point.) WRONG!

4)  Give them the opportunity to think about what they are trying to accomplish.  This should slow them down.  For example:  What have you tried? How well has that worked? What are you willing to do? This puts the creative problem solving into their court.

I did none of the above.  I did the opposite of everything above.  This took the meltdown to a whole new level.

Afterward, he calms down and says to me, "When you grabbed the belt...I felt like you were attacking me?  Can you please not do that next time?"

He also said, "I know I was wrong, but I'm not going to say I'm sorry because you're probably not ready to accept it."  He's learning!

"You're right, I should loose my privilege to talk on the phone today.  Maybe talking to (this particular friend) does get me too wound up.  Maybe I shouldn't talk to him as much." Ya think???

It's amazing how logical he is when he is lucid.

Guess I  could say the same for myself.

These are my "Confessions."  It takes a lot of humility to be able to tell this truth here.  I do it in hopes that I can help some of you when you go through a meltdown with a teenager with autism.  Hopefully, you will do better than I did in this instance.
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This training was given by a special education trainer in our school district.  Sama Training is Satori Alternatives to Managing aggression. It is designed to 

  • assist in preventing physical agression
  • contain a person when he is in danger to himself or others
  • handle special situations like retrieving objects
  • protect oneself and other from agressive acts.

Satori comes from a Japanese word which means clear understanding. 
You can click HERE for more information or contact your local school district's special education department to see if they provide this parent training. 

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