Monday, December 31, 2012

What Aspergers Is

2012 has been quite a year of ups and downs.  Our country has suffered through some really difficult times especially most recently with the mass shooting at the elementary school in Newtown, Connecticut.  That was something that hurt all of us to the core.  What some may not know is we actually lost innocent children who were on the autism spectrum with their whole lives ahead of them.

At the same time, the Aspergers community came under attack because the killer had an Aspergers diagnosis.  That however, had nothing to do with his this psychopathic decision to commit such a violent act.  Aspergers does not equate planned violence.

There are so many faces of autism that are human, positive and struggling to survive in this world that is sometimes completely alien to them.   A world where they often feel alone and totally misunderstood. They are more likely to be the victims of violence rather than the perpetrators.

I have two of those boys.

This is what Aspergers is:

Red is a self-taught Videographer
And Editor with his own business
He loves to help others with more severe disabilties at his High School
He gets up every Sunday and goes to church on his own
In his words:
"My goal in live is to follow the example of Christ
Help others as much as I can
and not be a douchebag."

Blue is an Honor Student
He spent his summer volunteering at a camp for kids with disabilities.
At his middle-school he is recognized regularly for showing compassion
And helping his peers in need
He loves exotic cars
He wants to be a Mechanical Engineer so that
He can design them.
He is an advocate for himself and others on the spectrum.
He speaks publicly at school and at teachers conferences.

Happy 2013 Everyone!

To see more of the beautiful faces of autism check out Autism Shines on Facebook and on Twitter. 

Wishing you a Peaceful and Happy 2013! 

Monday, December 17, 2012

What I Know & What I Don't

I am dizzy with grief and my head is spinning with information and opinions about what took place this past Friday in Newton, Connecticut where 20 beautiful children and 8 heroic educators lost their lives.

This morning I sent my boys off to school with faith that they will return home to me and sound. That's all I can do is have faith ...have faith and get involved at their schools to make sure that the culture of bullying and isolating children who are different really changes and not just accept lip service.  
I can advocate for a child who Red has taken under his wing, although he is only a step away from being shunned himself.   I know this friend of his is a target at their high-school.  His parents don't really seem to get it, because their way of disciplining him is to further isolate him from the few friends that he does have whenever he makes a mistake.  I can not change their parenting decisions, but I can work around them, advocate for him and help this child as much as I possibly can.  

There has been some link to the fact that the person who committed these monstrous acts ...was somewhere on the autism spectrum.  It has been said that he possibly had Aspergers.  The thing is ...we have no idea what co-morbid diagnosis this person had.  I hate to comment on what is an ongoing investigation.  We don't have an entire picture painted at this point.  We have pieces of information.  I believe that speculation based on only pieces can be extremely dangerous to those in the mental health and autism community.

I do know this ...autism or more specifically Aspergers within itself, does not equal violence.  To quote my friend Jill Smo of Yeah Good Times  "There is no connection between planned, violent behavior and an autism spectrum diagnosis of any kind."

I strongly urge you to read her short and sweet post on the subject.  You can find it HERE.

I will write about this more later.  I have so much information to digest and to share.  I need time to process this tragedy before I jump into dissecting it.  We can't ignore what happened, but what we can do is turn off the 24-hour news cycle that is sensationalizing and bringing attention to the person who committed these acts.  Instead spend time loving and nurturing our children.

  • We must pay attention and seek help for them  when we see a behavior pattern that is extreme or unusual, no matter how difficult that may be. 
  • Talk to them and encourage an open dialogue about what they are feeling and going through. 
  •  If we see another child who is in pain or hurting them.  
  • Do whatever we can to embrace those with differences and teach our children to do the same.
  • Don't turn your back or wait until we see another tragedy unfold. 

These answers may seem simplistic and I know there are larger issues at hand like

  • The state of mental health in America and equal access to it.
  • Gun control or lack thereof. 
  • Violence in American culture games, and movies, etc.

As I say on my header -I am not the expert mom with all of the answers.  I am just the mom who won't stop looking for them

#Love, #EmbraceDifference #Mentor, #Advocate

Thursday, December 13, 2012

Tis the Season & it Ain't Jolly

The layers of drama that come along with this time of the year are almost too much to bare.  I feel like I'm in a deranged game of ping pong, being banged with two paddles back and forth between two extremes of madness.

Seriously, it's one and then the other when you have two teenage boys on the spectrum and they are both going through their own individual issues.  I am there in the middle soaking it all in, being deluged by their emotions, anger, arguing, fighting, yelling, screaming and yes...sometimes cursing.  It's too much for them to handle.  It's too much for ME to handle, but what choice do I have really?  I am their person.

In high school their is always drama, but when you don't have the social nuances down, when you say things that you think are funny, but they are extremely inappropriate ...the typical high school drama is taken to a whole other level.

So Red has been on a bit of a high lately.  I mean so happy that he's found his tribe...his peeps ...his relationship with the Lord, that he feels like he can do no wrong.  He has been happy, confident, self-assured even.  He thrives on being a blessing to other people...helping those who are less fortunate than himself.  In fact, he is mentoring a young man who stands in the shoes that he walked in just a short time ago.

We had the awesome privilege of meeting with this young man and his mother on Saturday.  The young man has Aspergers and is in a really negative space right now.   The two of them were connected by a Special Education Administrator in the school who works with both of them.  We met at a hamburger/ice cream joint for lunch ...and it could not have gone better.  They both opened up to each other and had great dialog.  Red encouraged this young man and told him that it does indeed get better.  Oh My God ...I was such a proud mommy to see him in this role!  You could not wipe the smile off my face or take away the elation in my heart.  They will continue to work together in the future, which is a huge blessing and honor.

And then it all goes to crap ...he goes to school this week and says something socially inappropriate to one girl, about another girl and it all comes back to bite him in the ass.  He ends up meeting with a Vice Principal and has to sign an agreement to stay away from this girl.  I also have the Principal have the girl sign an agreement to do the same.

You see...this has happened before.  They become friends everything is hunky dory, until it's not.  She goes and "tells on him" for saying or doing something that makes her feel uncomfortable.  He stops talking to her.  A few months go by, and the girl befriends Red again.  They add each other on Facebook.  Time goes by...Red says or does something else to make her feel uncomfortable.  The next thing you know, she's back in the Vice Principals office complaining...again.  She's yanking his chain and confusing the hell out of this already social confused, inept boy.

Of course this whole thing upsets him.  He fixates, perseverates and ruminates over it until the point that he gets angry.  The next thing you know, he's yelling and cursing in a classroom with a friend over said issue.  This of course, causes another problem for himself. Today, he sits in PAD which is kind of like in-school-suspension, but it's for kids in a behavior program.

This means he will come home even more angry than he was in the first place.  And who will be the lucky winner in that situation? Yep...that's right.  Me, and probably his brother who he will pick a fight with.

His brother, Blue ...who is already dealing with his own set of issues, depression anxiety and anger because ...well, Tis the Season.  Blue has been upset and sharing the love with me mostly about school in recent weeks.  He wants his grades to be nothing less than perfect.  He spends so much energy on this and is wound up so tight you could bounce right off of him.  He has all of this homework and sometimes, he's just too freaking exhausted to get it all done.  Heaven forbid there be something extra thrown into the game plan, like a therapy appointment, him going to youth night at church, or me reminding him to take a shower!  Then we have WW3.

There is also the issue of Christmas and that list that he keeps doing and re-doing, researching, changing, adding, subtracting until the point of absolute madness.  Fixating on really expensive gifts that we can not afford to and will not be getting him this year.

Oh yeah ...lets add another layer to this madness.  My mother...who lives with us gets so highly offended when they loose it with me.  When they are here in their home, their safe place and they absolutely loose it.  There is of course, yelling, screaming, fighting and sometimes cursing.  She wants to call them out on it, usually in the middle of it, because she can't stay out of anything.  Or better yet, she wants to put them on the naughty list and let them know that they won't be getting any gifts from her, or their gifts will be modified because she doesn't appreciate the way they treat her daughter.  I mean it's great that you love me mom and want to protect me...but I find myself trying harder to manage them so that they won't upset you, which makes my life what? HARDER!  This is our home...this is our life.  This is our bullshit drama!  I don't need anything to add to it!

These are mental, neurological issues.  Telling them what they are not getting for Christmas does not make their issues go away!  It does what? It increases their anxiety!!! And MINE!

Guess what if I'm honest...I don't really care that they curse here.  I mean sounds bad.  But I would rather them do it hear than at school!  And I know how to deal with it.  I know how to calm them down.  I also know how to walk away when I can't handle it anymore.

They have issues with anger...I would like to teach them skills to better handle their anger, and Lord knows I am doing everything I possibly can to help them with it, from medication to therapy, teaching them anger management skills  ...but I can not teach them anything in the middle of their anger!!! The teaching part comes in when they are calm.

Me getting angry (and I'm not saying I don't) or Grandma and Dad getting angry when the boys are already angry just makes for bigger anger.  When will anyone in this house ever freakin' get that???

I swear...we just need a therapist to move in with us.  Anybody know one?  Not that we could afford it. That's another thing ...the therapy bills are killing me.

And that is my rant for today ...thanks for listening.

Feel free to comment below... and if you are a therapist willing to move in with us or adopt my children... please leave your contact information. 

Friday, December 7, 2012

In His Own Words

This week has been full of interesting insight and hilarious statements from Red.  In one moment it seems like he took a maturity pill and has suddenly grown up.  And then...I dunno...maybe it was a placebo and he goes back to being...well...Red.

Actually Ready Early for School On Monday 
I'm going to keep this simple and just share the week via his infamous quotes, Facebook statuses and text messages to me...his biggest fan, confidant and mom...

On our way to therapy on Monday...quote:

"I am trying to be less selfish, help as many people as I can...and not be a douchebag." 

"Sometimes, when I try to help (insert name here)...I feel really frustrated because she acts like she doesn't want my help.  She won't she knows everything, but she doesn't.  I think this will be what it's like to be a father." 

Later, the subject changes.  He is looking up something on google and apparently, something shall we say, unexpected pops up.  I had to share this quote...

"You know mom.  I can be on google images...put in darn near anything...and porn pops up.  I mean...I can put in DragonBall Z under google images and there's porn! Who ever created porn is a prick!" 

As a mother I know I should not be laughing, especially with the language and all...but I thought this was hilarious.  I love that Aspie honesty.

Later that night before bed he says,

"You know mom...I really had a good time with you and Blue today.  It may not always seem like it but...I really love you." 

Just wow....

Tuesday afternoon Facebook status:

"Had a really awesome day!!! :) I job trained two students with special needs today. I'm very proud of doing that. My job coaches are working on getting me a job at a hotel. God has blessed me a lot this school year!! Thank you God for everything!!! :)

His job coach told him he was doing a really good job.  She also made the mistake of telling him there was a 90% chance that he would get a job at this hotel.  He went to the site on Wednesday, opened mouth and inserted foot.

While vacuuming in front of the prospective employer he says and I quote:

"When it comes to certain things...I move kind of slow." 

On the way back to school he and job coach get into it.  She tells him he made the wrong impression.  You never tell an employer you work slowly.  He becomes angry.  She tells him he may have blown it.  So basically, he has gone from an extreme high to this low... and of course he blames the Job-Coach.  When they get back to campus he starts yelling, door slamming, fist banging, etc.

I have to say...he did show some restraint.  At least he waited until they got back to the classroom to show his anger.  However,  as a consequence...he gets an office referral and ends up getting lunch detention the following day.  Personally, I think the job coach should have gotten detention too!  She should never have opened her mouth to tell him that the job was 90% in the bag in the first place.

He comes home from school...quote:

"I don't need those freaking job coaches!  I don't need special education!  And I'm not going to any freakin' detention!" 

I told him not to worry, if for some reason this door closes it just means that a better one will open.  Perhaps this is not the job for him.  He watched a little Sponge Bob to lighten his mood.  Later he says, to me...

"I just want to be normal.  I don't understand why I have to get so angry.  Other people aren't like this.  I'm tired of being this way and I don't know what else to do when I'm angry."

I remind him of how far he has come in a year's time.  That his anger does not take as long to get through.  He recovers quickly.  He apologizes.  He is not actually cursing teachers out.  That's progress... and he will continue to progress as he matures.  He will have to remember his cool off strategies.

After our conversation  he writes this Facebook quote...

"I had a really rough day but I'm going to youth tonight and having fun with my church friends :)" 

The following morning however we were back to....

"I'm not going to any freaking detention today!"

Around 11 a.m. he starts a text conversation with me.  He is basically processing his feelings...which is great self-advocacy...

"Mom don't be surprised if you get a call from Mr. B. today. I don't care what Mr. T. says, I'm not going to D-hall." 
"Don't make it worse for yourself son.  If you don't go to D-hall the consequences will only get bigger. Remember your goal.  You want a job. People are looking at your actions to determine if you are ready for that." 
"I hate Mr. B and Mr. T.  I want to get out of this program.  I just want to be normal."
"I'm sorry that you're upset.   Talk to God...don't make things worse for yourself."
"Why can't I be normal like S.?" (his friend who is also on the spectrum)
"S - told you last night he gets angry too. Everyone gets angry at some point." 
"Not like me."
"Son ...this is an opportunity to be mature and make the right choice." 

He did.  He went to D-hall and shortly thereafter posted this on Facebook...

"The most sucessful people are the ones that have failed the most. We all make mistakes because we're all human. God didn't make us perfect. Only Jesus was perfect. Learn from your mistakes and try to do better in life. Don't give up!!"!

In his own words....or maybe someone else's... probably Mr. B., whom he "hates!" But at least these words resonated with him enough to share with his friends on Facebook.

In My own words....

Today, I had a book review published by Little Pickle Press.  The book is about a day in the life of an elementary school aged boy on the spectrum.  Check it out here:

  "Spaghetti is NOT a Finger Food and Other Life Lessons"