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Wednesday, October 30, 2013

My Knight

I laid my head down on the table in the middle of the sandwich joint.  I just couldn't hold it up any more.  I couldn't hold myself together one moment longer.
My heart heavy, my chest tightening -I just needed to take a moment.
When I lifted my head, a guy comes over to my table...
"Can I take that for you mam?" he said, looking at the sandwich basket on the table.
"Sure...go ahead. Thank you," I reply.

Then I saw him.  My tall, handsome husband appeared out of nowhere wearing his new sexy, tinted glasses (yes I find glasses sexy) and just enough of a smile on his face to tell me his thought ~I know I am what you need right now.  He appeared in this moment, just as I was about to fall apart.

He called me just as I was leaving my last errand.  He wanted to check on me as he was driving back into town.  I told him I was going to grab a bite and where.  He had stops to make and was tired from his drive from Houston.  I didn't expect him to come, but I was so glad that he did.
He never looked so good to me, as he did in that moment.
Well maybe he has.  He seems to get more handsome with maturity.  Whatever the case may be ...it sure felt like my perfectly, handsome knight had arrived to rescue me.

He sat down in the booth right next to me and said, "Something told me to come to you."
With that the tears that had been fighting, began to fall.  They poured from my eyes.  I was able to let it all go. His presence was just what I needed to allow me to let it all out.

I let it happen again.  I have buried myself underneath the avalanche of my children's needs.
I'm feeling like I can't breathe.
I'm gasping for air.
I'm trying to hold it together for them.
I am aching for them.
I'm turning front flips and back flips to keep Blue's level of stress down, and no matter how much I do ...it's.never.enough.

I know deep down that I'm doing way too much.  Again, I have cut off my entire life, seldom seeing friends, minimal exercise, and very little writing. Not much of a life -at all.
We have had the occasional quickie date night whenever we can sneak one in between drop offs and pick ups.  Even the date nights are often cut short to run home to some minor catastrophe.

As a mother, it's so hard to see my child so miserable, feeling so bad about himself, feeling so unaccepted in the world, feeling so out of control.
Blue says things like...
I want this pain to stop.
Why does my life have to be like this?
Why doesn't anyone like me?

They both need me to listen to them.
They need to vent.
They need to process their feelings every.day.all.the.time.
I am on overload!

If I say nothing they get angry. 
If I say too much...they disagree.   
I try to help ...I'm helping the wrong way. 
I just can not fucking win!

When I balk or say,
"I can't take anymore!"
Blue ends up with hurt feelings.
He starts crying and says, "I don't mean to hurt you mom.  I'm such a terrible person."
This makes me want to suck it up and let him dump on me more, but...
I'm human.
I have limits.
He has to know that.

So on this day, in this moment, in the arms of my knight, in the middle of a freakin' sandwich shop ...I was able to have a good, cathartic cry.
I was assured that I am loved.
I am enough.
In fact, I'm more than enough.

This is love.


Thursday, October 24, 2013

JROTC the Death of Me

Confession:  I am seriously contemplating how I can possibly take a vacation away from my kids.  I'd love to have a month ...but I'd take an overnight.

In my delusional mind, I always thought once the boys became teenagers, it would be a breeze to get away to do grown up things.  Once my mom moved in with us ...I thought it would be even easier.  Built in kid-sitting right? Only NOT!

When your teenagers are high maintenance and volatile with the tendency to explode and fight, you can't always walk out the door, drive away knowing that it will be just fine. It may actually turn into holy hell within a matter of seconds.

Sunday was the most peaceful day I've had in quite a while.  The days the kids are at school, are not that peaceful.  The phone always rings with some crap or another.  There is driving, running around from place to place, putting out fires, taking them to appointments, to work, to church, maintaining a household, etc.

On this Sunday however, Red spent the night with a friend and would not be returning until the evening.  Blue went to a youth festival at a friend's church.  The sun was shining, the air was crisp.  I sat on my chase lounge, near the window of my bedroom, sunbathing, writing and browsing facebook.   I took a long, hot, delectable bubble bath, before going out to meet a fellow blogger/autism mama friend,  Author of Balanced Imperfection for dinner.  She was in town for one night only.

I left with the confidence that all ducks were in a row.  The kids would be at home minimal time, before having to go to bed.  Vitamins,  meds and dinner for everyone was all lined up. Easy breezy, right? Dad and Nana can handle it right? Right?  I mean for God's sake...I deserve a freakin break! Me time is becoming more and more infrequent every.single.day.  This is ridiculous!  My kids are 14 and 18.  We have 3 adults in the house?  Why should I have to be so tied down that I can't even go out to dinner with a girlfriend?

In fact, this was my status on FB just before I left.

In the peace and tranquility of this Sunday afternoon, I sit I think, I write. There are no children in my house at the moment. I will be leaving before they get home to have dinner with a blogger, mama, friend of mine.

I have an ah hah moment ...
I need to leave them more often.
They need to figure out how to live without my presence, and deal with each other, and their father more.
When I'm gone, I need to really be gone.
Unavailable for complaint.
No access.
It's not as if they are any happier when I'm present.
In fact, I present them with constant opportunity to lay all of their burdens on me.
It's not that they will appreciate me more when I return.
It's that I will appreciate me more when I return.


While I was smiling for this picture... holy hell broke lose!

Me and Monica 
While academics come pretty easily for Blue, anything physical is extremely difficult.  He has always hated P.E. because of the noise, the crowds and the competition.  Sports and physical activity is just not his thing.  He made it through middle school P.E. by the grace of God.  He had the most phenomenal coach ever as his teacher.  He didn't tolerate any bullying or putting other students down.  He and Blue became fast friends.  In fact, Blue even became his Teacher's Assistant during his 8th grade year.

So for high school he chose JROTC as his physical credit, because of the recommendation of a friend.  Thus far, it has been a real love/hate relationship.  It has been the source of much anxiety, and several meltdowns. Most meltdowns have been a result of the uniform and inspection days.  Other's have been related to feeling like crap because he is the slowest runner in the entire squad ...by a lot!  This wreaks havoc on his self-esteem.

There was an incident last week in which they were playing a football game on Fun Friday.  Ironic huh?  His team was losing badly. He felt like he sucked and it was all his fault.  This conjured up all kinds of self-doubting emotions, which he decided to link to a teacher from middle school.  He felt so overwhelmed that he shutdown and ran away from the game and started crying.  Yep...crying where peers could see him, which made him even more mortified when he realized what he was doing.

Over the next few days, this anger built up in his mind and somehow it also got tied into his father.  They've been butting heads a lot lately too.  I think in some ways he blames his father for some his problems and feelings, because they are so much alike.  He needs someone to blame for his lack of self-esteem.  All of these worries, problems and imperfection, couldn't possibly be his fault.

So when I left Sunday night for dinner...the shit hit the fan big time.  One thing led to another and there was a major meltdown, which included some aggression and very nasty words towards dad.  When I arrived home after dinner, Blue was exhausted and had fallen asleep. The following morning, the first words out of his mouth were, "You left! And this is all your fault!"
He was still exhausted, mentally and physically.  He ended up not going to school. That morning, you could cut the tension with a knife between him and dad.  It was bad.  So bad that it frightened me.

I need my teammate to help me through these teen years with the boys.  The problem is they are at such odds, it makes it more difficult for dad to parent.  It ends up leaving everything on me, and I end up feeling resentful towards all of them.  Dad ends up with pretty negative feelings.  It's a horrible, downward spiral for the entire family.

We end up in a 2 hour family therapy session where we worked out some of these thoughts and feelings.  It was not fun, but it had to be done.  The therapist told me and dad that sometimes we have to let the boys vent their frustrations, without judgement, without trying to teach a lesson,  or trying to fix the problem.  No lessons are learned when an Aspergers child is angry.  There are no fixes to the issue that will come from an outside source during a fit of anger.  In the midst of anger, everything we say to the angered person, can feel hurtful to them.  Can you believe that?

One of my friends on the spectrum told me this about anger,

"As an aspie myself, I totally understand the frustrations of being misunderstood. Trying to relate or cope when no one understands life from your point of view. Many NTs try very hard to understand, but it's difficult to understand unless you know the mindset. When we hear your words, even the empathy from you hurts during those times, because we do not feel understood and don't think anyone can understand what we are feeling, so it is at those times where everything hurts...even the loving kindness that you are showing. Please don't take it personal. It is just our way of dealing with everything. We love our family so much and feel so safe that you become our punching bag in a way because we know in all things that we do you will not hurt us... I'm so sorry that you feel pain. Keep trying calming methods, they will eventually work for you."
~Jackie Pilgrim

This is not to say that we can not teach them lessons or help give them the answers that they desperately need.  It's all about timing.  Many lessons will come to them by the example of the way that we live our lives.  Others can be taught when the mood is right, when their minds are ready to receive.  A lecture or debate when the child is already upset and confused is only going to exasperate them, and make them more angry.  Fight or flight will kick in and they will end up lashing out in one way or another.

The therapist also encouraged the boys to accept our answer of no, with the explanation of why, and not to continue to carry on all of these extended debates.

I thought we made it through the family crisis, when on Tuesday morning Blue had another major meltdown over the ROTC uniform.  This was the first time he was to wear his dress jacket for inspection.  He had no idea how to put everything together properly.  It took him over 45 minutes to get dressed.  When he finally came downstairs, he had on the jacket, with no shirt, with the tie around his naked neck! When I told him he is supposed to put the shirt on underneath the jacket, he flipped! It sounds funny and it was.  But It was also very ugly.

Keep in mind, this is a kid who likes to wear jogging pants and t-shirts most of the time.  He is being asked to wear this very uncomfortable, although quite distinguishing, uniform and then be inspected for perfection!  That's a lot of pressure.

He ripped off the uniform and threw it to the ground! We both nearly decided that ROTC was not worth the many meltdowns that he's having as a result.  I was actually, the main culprit telling him to just forget about it!  (Bad parenting moment ...I know). In the heat of the moment we were both extremely frustrated.

After taking a deep breath, I realize,  the thing about parenting when your children become teenagers, is many things are no longer your decision.  You are merely a consultant in their lives.  They really do have to make their own decisions when it comes to interests, activities, classes to take, what to major in,  and so on.  I even extend that to their spiritual beliefs.  It's not about what I believe anymore.  I really do want them to make their own choices and be comfortable in doing so.

We ended up in the School Psychologist's office for yet, another therapy session.  She was brilliant!  She got to the root cause of his thoughts and feelings and helped him figure out what he needed to do about it.  She got him to figure out what supports and resources he could connect with to help him through his ROTC issues.

His Commanding Officer is really an awesome guy, and a wonderful resource.  They decided that Blue will now take his uniform to school and get dressed there in the ROTC building, where he will get whatever help that he needs.

As far as his physical/exercise and drill issues, he will put in the extra work and effort to improve slowly.  It will have to come from inward motivation to do better.  The unit is really a supportive place full of students who want to help each other.  It really isn't a typical judgmental, competitive environment.  It's all about teamwork.  He is a part of something good and everyone there wants him to succeed.

With the Psychologist, he determined that he has just has to stop dragging around the negative weight and baggage from the past, and the negative voices inside of his head.  He will use his energy to move forward and continue to improve.

He ended up wearing his uniform instead the next day -successfully.  In fact, he ended up making rank and -received his first promotion.  He got two pins to put on his dress jacket.
I think he felt proud of his uniform.  He didn't really want to take it off once he got home.

Here's another FB Status I wrote as a reminder to myself last week...

Dear Aspergers Mom,
Just listen.
Do not try to fix it.


Sometimes, we all need reminders.







Monday, October 14, 2013

Confessions Vlog

Recently, I decided to try something new -video blogging.  At first is was just a coffee chat giving an update on the latest with the boys.

Then I decided to do more of an informative style to address certain subjects that were coming up a lot in some of my support groups on Facebook.

The first one I'm going to link here is about Aspergers & Agression 



The next one is Aspergers & Homework



They videos haven't received as much love as I hoped.  I suppose the video audience is much different than those of you who like to read the blog.

Please check them out!  If you like them, please leave a comment, and subscribe to my Youtube Channel

Love and Patience,

~Karen 

Friday, October 11, 2013

Love In The Time Of Autism -Guest Post by Jordan of Find My Eyes


One of my favorite bloggers asked me to write a guest post for her and I was happy to oblige. I asked her if she wanted something specific and groaned under my breath as she answered. “Can you write something about making your marriage work? You and Julie do such an amazing job with each other”…

Thanks. Can’t you get a chick to write that?
Who on Earth would want my opinion on that?

But, she was right. I read these alarming statistics about divorce and autism. I’m friends with several single moms (and dads, yes they do exist) raising at least one child with special needs. I’m friends with several married moms and dads that, sadly, have very little to do with each other, or with their child’s diagnosis.

In our house, we’ve flipped the script. We decided to cross cast the roles that were available for the show. After our daughter was born (2010) and our son (2006) was starting his therapy journey, it became evident that one of us would need to be at home. Julie had the much better job (and future within), so it was going to be me. 

Thing is, I kind of suck at this. In addition to attending almost 3 years of daily therapies and schools and play dates and birthday parties and the such, I now had the responsibilities of the classic “housewife”… namely cooking and cleaning. Cooking? Meh? But cleaning? Next please.

Suddenly, life became unfair (from my point of view). She got to go out and work this fun, rewarding, and stimulating job, making a name for herself. And my success was now deeply coinciding with how well my children were doing… and one of them is autistic! 

If I were the one out working ridiculously long hours, society would see me as a hero! Look at how well that dad provides for his family! He must really love his wife to work so hard! 

Worse yet, the comments she gets… “It must kill you to be away from your kids so much”, “How can you leave your kids with a man who still thinks farts are funny”.

***
We spend a lot of time teaching “perspective-taking” with our son. We constantly drill him with questions like “how does he feel” and “what does she think” and “what do you think he should do” and “how does that make you feel”. 

Perhaps we should all drill ourselves.

*** 
None of those things bother me. I painted a picture of an absent, workaholic mother, and a bitter, stay-at-home loser father.

The truth is that both of us are pretty happy in our roles. We’re both pretty good at telling each other when we are either envious or, more importantly, NOT envious of these duties. 

“I have to file an MSJ, so I’ll be working late tonight”
“Sucks to be you. I’m cleaning up the bathroom, again, because someone can’t learn to shit in the potty”
“Sucks to be you”

Where I really score a double-win is with our special needs child. I think we’ve done a wonderful job splitting duties… almost diabolically so.

Yes, I do almost all the therapies and the schoolwork and the such, but my wife does all the organizing. She sets the appointments. She writes the emails. She fights with the  regional center. The really important stuff, we do together. What we’ve established is a great “good cop/bad cop” scenario. I go to the meetings and raise my voice to the point that they want to talk to the mother, the reasonable one. Little do they know, that reasonable one is so much smarter than the other, so much more of an advocate, and very involved and versed in what we need for our son. 

And I go to her first when we need it. Very few decisions are made without lengthy (God are they lengthy) discussions about what we both think. We make an unspoken pact to make a decision, and don’t allow ourselves to second guess it once that decision has been reached mutually, because that can lead to a lot of doubt and/or blame… which ain’t healthy for anyone.

*** 
This was supposed to be about making a healthy marriage last in the time of autism, so I guess I should give some advice? I feel like the oldest couple at a wedding being asked what makes marriage work. So, my advice…

I have no effin’ clue. I can tell you why I have a good marriage. I can tell you why either Julie or I don’t leave in the face of adversity, but I don’t know if it applies. When people ask me “how do you do it?” I always have the same answer. You just do. Julie and I know no differently. Our family is just that… OURS. Does having a son with autism make our lives harder than yours? Does having a stay-at-home-dad make our life more challenging than yours? Does having mom at work for hours and hours make our life more lonely than yours?

Of course not. It’s just what it is.

Perspective.

***
Here are the things we do well in our marriage:

Advice for men:

Remember, your wife loves and hates her “role” as much as you do yours. Respect that!
Women think differently than you do. They react emotionally. They come home to a dirty house disappointed in you. They grow further disappointed that you couldn’t figure out that’s why they were disappointed on your own. So instead of getting pissy back (cause we ain’t ever gonna’ understand them), simply ask “what would you like?” and do it. Cuts the second half of that argument out completely.
Women like to be complimented… especially when they don’t have to fish for them. You should wake up every morning and say “You look beautiful” or “Your MSJ was brilliant” or “I really like the living room furniture you picked out last Christmas”. It will make their day.

Advice for women:

We are immature. We all think farts are funny, like beer, and a good off-color joke. Accept that. It ain’t gonna’ change.
Before you get disappointed because we couldn’t figure out how you were feeling on our own, tell us. Really saves a lot of time. Before you leave for work say “I would like you to take all that crap to the Goodwill today” instead of being disappointed that we didn’t figure that out on our own when you get home and there’s still a pile of crap in the front closet.
We really like you telling us what you like in bed. I can guarantee it will not disappoint us (unless it involves George Clooney… feel free to keep that to yourself)

***
Lives change. Roles change. Circumstances change.

I want you to remember, every day, what made the younger version of yourself want to be with  your spouse for the rest of your life. 

Chances are, despite whatever dynamics have occurred, it’s still there.

***
I started dating my wife in 1997. 

In 2005 I married her. 

I married the nicest and most empathetic human being I had ever known. I truly felt lucky to be with her.

When Jack was a baby (2006) he came home from the hospital with a pretty bad case of jaundice. My wife and I took him to the pediatrician as brand-new first time parents and were told to put him on home phototherapy. 

Those were the two longest days of my life. We stayed up worrying for him. It was the first time I ever truly had to put the needs of another in front of mine.

But my wife had been doing that since she married me…

And I finally understood the beauty of true empathy.

Jordan and Family
Aren't they gorgeous?!

Editorial Note: 

I have been married to the father of my children for nearly 20 years.  Although in many ways we have an excellent partnership, lately I've been feeling very alone in the details of raising our 2 teen boys on the spectrum.  It seems that these teen years have them butting heads with their father more often than not.  It has been very strenuous on our entire family.  

I was looking for answers and quite frankly, and Jordan came to mind.  He and his wife Julie have younger children, and haven't been married as long as we have.  However, they seem to have an excellent partnership.  I wanted to see what he could share with those of us who are struggling through this journey of marriage and raising kids with special needs.  

He did a brilliant job!  

I hope that you will read this and share it with your partner in life. 

You can find more of Jordan's writing about his family at Find My Eyes.  He also gives awesome updates on facebook/FindMyEyes

Tuesday, October 8, 2013

Still on Earth

I got one of those phone calls from the school.  If you're an autism parent you know exactly what I'm talking about.

Actually, the first call was from Red.  Seeing his name on the caller i.d. is almost as bad as seeing the high school's number during the day.  The last thing I want is a call from either of them.

"Mom.  I need you to come get me.  I'm really pissed off.  I just left the AP's office..."
The strange thing is -his tone was not belligerent.  His language was very lucid.  Everything he was saying made perfectly good sense.  He wasn't happy about the situation but he wasn't over the top either.  Less than a year ago, this very same phone call would have had me running over to the school because he was threatening to harm himself.  Any encounter with a police officer, if not self-initiated sends him over the moon.  And this was a substitute campus officer -not the one he knows and is actually pretty fond of.

 Today, he was still on earth -not happy, but not totally losing it either.

I however, was pissed!  I had to play the roll of cool, calm, and collected, so that he would remain in control.  But I could have kicked that Assistant Principal right in the ass if I had been close enough. He called Red in and had the campus police officer there to "explain" how certain things work out in the "real world."
The A.P. is also a little wimp and was probably afraid of the big bad, black teenager with autism.  Red might lose it, so he better have the officer there to intimidate him.  Red has lost it before.  Violence? No. That is not in his character.

A student filed a complaint that Red was making him feel uncomfortable, because he kept going up to him saying, "You need to stay away from my friends." Said student wants Red to "stay away from him."

Does this student have that right? Absolutely.
Does Red fully comprehend that?  I can't tell you that for sure.
Can Red control how he feels, this jealousy and envy for this other student? No.  He can not.
Can Red control his impulse to go up and talk to this boy every time he sees him?  So far...the answer is  No.
This behavior has been an ongoing problem, stemming from Red's insecurity, low self-esteem, unhappiness, and feelings of being disliked and unaccepted in the high school culture.   These are  common feelings for students in high school with Aspergers. Blue has only been there a few weeks and he already feels like an outcast.

As the mom ...I have to teach Red the ways of the world.  Although, he would like the world to operate according to his rules -that is not going to happen.
I tell him, that although he can not control his feelings, he has to control his actions.  People who can not control their actions, end up losing some of their freedoms.

In the adult world, Aspergers is not an excuse.  It may be a defense, but not an excuse.  In other words, in the real world you can be arrested, and have a trial for your actions.  Your attorney can argue, that your compulsive behavior is a result of your autism -that autism and A.D.H.D. makes you have difficulty with impulse control.  Will that excuse your behavior? Probably not.  There will be some consequence.  After all, he is black ...and this is America.  He already has a strike against him.  Autism just compounds the problem.
There is already the consequence of an arrest and paying for an attorney for your defense.  So, do we really want to go there? Absolutely not!

I pray that he is learning these lessons in the relatively safe environment of the high school.  And I do mean relatively.  Who knows how much mental damage this freaking school is causing him everyday.  It is safe in that what happens there, unless completely illegal, does not land you with such consequences.

Now...why was I pissed?  Because the asshole A.P. called me after the fact, of calling Red into his office and having a police officer there to intimidate him.  He knows damn well, he should have called me beforehand.  We've been through this before.  I've laid him out before.

When he called me and asked me, "How are you doing today?" How do you think I'm doing? I'm pissed! Red has already called me and said, he wants to drop out of school ...you asswipe! 

Granted -Red is 18 years-old now.  He is supposed to be legally responsible for himself.  Is he mature enough to know what that means?  Not really.
No -I did not file for guardianship.  I want to give him the opportunity to take care of his own life. We did however have him sign a Power of Attorney, so that I can help him with legal, medical and financial matters, if he is unable to do so himself.  This includes, if he doesn't fully understand what is being asked of him.

We just signed the Power of Attorney last week and it is not on file with the school yet.  You can bet your ass -it will be put on file today!  Yes ...I let the AP know that I would be getting a copy of it electronically from my attorney, so that I can put it on file today.  And yes, if you know what's best for you, you will call me before you call my son into your office the next time.  Otherwise, you may be getting a visit directly from my attorney!

Meanwhile, I had to make my 3rd trip over to the high school for that day, to bring Blue some medicine for the nebulizer.  I decided to have a chat with the campus officer, to find out exactly what kind of chat he had with my son.  He explained, that the definition, of harassment/bullying has recently been expanded to include, annoying another student.  HA!!  Annoying is the very definition of Aspergers!  You expect a child with Aspergers not to annoy another student.  That's rich!

He basically told Red, that these kind of issues can lead to real problems in a public location other than the school.  In other words, this is a behavior that we need to break, before it causes him any real problems. I get that.  I'm totally with that.  In fact, in a sad way, I am glad these kinds of issues are being addressed now, so that we hopefully never encounter them after we walk out of the doors of that freakin' high school.

The really exceptional news is that Red processed through all of this extremely well with his therapist yesterday afternoon.  He actually accepted responsibility for his actions.  He was calm, cool, and very mature about the whole thing.  This.is.a.miracle.  Maybe he really is growing up.  Maybe he is starting to get it.

The real kicker was later that day,  we picked his friend up.  When he got in the car Red told him, "Man let's not talk about so and so anymore.  It's a real trigger for me.  If I bring him up again, I want you to slap me!" he said as he laughed.  "And if you bring him up, I'll slap you!"

Editorial Note:

This is something I had to write about instead of talk about on my YouTube Vlog .  Have you checked it out by the way?  You really should! 

Friday, October 4, 2013

Confessions Day 3 -How to Not Write A Book



Hi Loves!
Hope you aren't tired of seeing my face yet.
Please go to You tube and give me a thumbs up if you like the video.

Wednesday, October 2, 2013

First Confessions Vlog!



Hey Loves!
So nice to talk to you all! Please actually go to YouTube and 'thumbs up' my video.
Subscribe and feel free to share it!
~Karen