Until you Use Me UP

This morning I woke up at 9 a.m. on a Saturday to take Red to go volunteer at the YMCA, Healthy Kids day.  This was one of the solutions that we (his transition teacher, Red and I) came up with to help fill some of his free time, so that he wouldn't be getting into trouble here at home.  Boredom is not his friend. When he's bored, he wants me to entertain him, he fights with his brother  or argues with my Mom for entertainment. 

There was no cereal or protein powder for a smoothie for breakfast, so on the way there, we stopped to pick up breakfast sandwiches. 

A few hours later, he called me to bring his work out clothes so that he could swim before he came home.  In between all of this, I ran other errands i.e. the grocery store, and picking up breakfast tacos for the rest of the family. 

When I go back to pick him up from the Y, he wanted me to go across town to pick up his friend. This is what I told him. 

"I am not feeling very well. I need to rest. It's not my problem that your friend's dad is an asshole." 

"But you have picked him up before." 

"Yes.  I have, but my doctor told me I have to stop saying yes to everything. It seems that the nicer I am, the more you ask of me.  You don't ask your dad most of the time, because you know the answer will be no. In life, the more you give some people, they will just sit back and let you do all of the work.  If I don't say no sometimes, I will end up with high blood pressure or end up having a heart attack. I am not going to do everything just so that your friend doesn't have to listen to his dad or his grandparents complain." 

He went on and on for over an hour.  I stopped talking. I came home, closed my door and took a nap.  

I won.  His grandparents brought his friend over. 

*Moral of the story.  People will use you up if you let them. I have to draw the line. 

I am a work in progress. 

Dear Diary, It's Easter

Easter Sunday in my house is really not a big holiday.  We never were the family who dyed eggs.  That was a tradition I missed out on as a child raised as a Jehovah's Witness.  With my boys being the handful that they were when they were little, I just never went there.  Instead, I would buy the plastic eggs, fill them with candy, coins, and money and hide them all over the backyard, or inside the house, depending on the weather.

It's not a holiday that we often spend with extended family, because it falls in April.  If we see family, it's for Christmas or during the summer. Although, I did spend one with my brother a few years ago because it was near the time of my birthday, which I often spend in Los Angeles without the boys.  Ordinarily, it's just us, here in Texas.

Back in the day when we used to have local friends who were almost like family, we would combine our family dinners, which was fun.  Since then, for reasons that don't really make sense or add up, we have been dismissed from the close friend status.  Personally, I think to know me is to love me.  How could anyone not want to be my friend and want to have me around as often as possible.  I'm pretty freakin awesome ...I think.  Crazy yes.  But also awesome.

We have other friends here, that I could have made the effort to invite over yesterday, but I didn't.  Why? Because entertaining has become an overwhelming task for me.  I already don't want to cook for the unappreciative heathens, who are my children.  You know, I slave all day, then they come downstairs and tell me everything that they don't like, and what looks disgusting.  I never know how they are going to be behaving, fighting or how much stress I will be under.

Sometimes, the more people around, the worse the behavior when it comes to my boys, my husband too for that matter. One might believe that they love an audience to perform for, but perhaps it's just their Aspergery ways.

I woke up regretting that I had decided to cook.  I felt pressured by my mother who was thinking about what we were going to eat for Easter dinner over a week ago.  The idea of going out sounds nice, but it's usually disastrous when we take the whole family.  As I looked on Facebook at all of the fun family gatherings, or some people doing less traditional things like hanging out at the zoo, I secretly wished I was anywhere but here, doing anything but cooking.

We spent this Easter Sunday alone ...just our immediate family.  I cooked a very basic meal, which everyone enjoyed except for me.  It's hard to enjoy a meal after I've slaved over it for hours. I made a gorgeous ham, macaroni and cheese, sweet potatoes, asparagus, and yeast rolls.

My ham was so purrty

I spent most of the day wondering if my father was alive or not.  His caregiver had called on Saturday  and left a message to say that he wasn't sounding like himself. When I tried to call back, I got no answer for hours on end including most of the day on Sunday.

I ended up sending the local police to his apartment.  He didn't answer the door.  A neighbor told the officer, he had just left to go to church with his daughter.  First of all, he doesn't go to church ...ever! Second of all, I am in Texas, he's in California.  My sister who is in California has not been able to catch up with him for days.

I finally got a call around 5 p.m. from the caregiver.  He is indeed alive, but not doing well. He did indeed go to church with her.  That within itself tells me for sure, he is NOT IN HIS RIGHT MIND!  I felt awful that he was spending Easter alone, without any family.  None of us have a key to his apartment, because that's the way he wants it.  He has isolated himself, and is mad at most of his children.  He refuses the kind of help that my siblings and I have tried to give him.  The whole family situation in L.A. is just a disaster.  I am sad and disillusioned with the whole thing.  This is just not who I ever imagined our family to be...ever. I hate that I'm not there to piece everything back together.  But the truth is, I can't change grown ass, stubborn people, no matter how much I would like to.  I have my own set of problems right here that I can't seem to fix.

Me and Hubby Chillaxin on the couch after dinner

Why can't everyone just be like me?  When it comes to people that I love, I just can not hold on to anger and pettiness.  I let it go.  I move on.  I try to accept people for who they are, no matter how crazy that may be.  Yes, we will have disagreements, we may get pissed at one another, but after a while, I just let it go. That is, unless I never really loved you all that much in the first place.  Holding on to anger just doesn't feel good.

So it was a quiet, rather lonely, disillusioned with people, kind of Easter Sunday.  Even though it was boring, because we didn't have any company or family here, at least the boys were not fighting.  They did enjoy the meal.  We enjoyed church service right here in our living room via the internet.  The service touched my husband's heart enough that he managed to let go of some of his anger with Red.  They actually had some pleasant conversation.  No one complained hardly all day.  And the very best part is ...my dad is still alive and I never put on a bra the entire day. 

The Twilight Zone

The last few days have been hell around here.  At first I blamed it on the full moon.  When that came and went, I didn't know what to blame it on.  Am I living in Twilight Zone or what?

The Hubby was out of town most of the week, and it seemed like Red was taking full advantage over that fact.  Every night he started ranting and raving over one thing or another.  He's been stuck on what a family of sinners we all are. We all curse like sailors!  None of us are Christian enough. He wishes he had been born into a "real Christian family," with a father who is a Pastor. He's been in and out of being almost manic.  He certainly isn't grounded in reality.

We don't curse any more than he did a year ago, before he went and became perfect. If he hears a curse word come out of my mouth it's out of shear frustration with his behavior. Everything is extreme with him, black or white, all or nothing.  No one can live up to his level of perfection, including himself.  But of course, he never looks at himself.  It's much easier to blame and criticize the world all around him.

He seems to be angry for no apparent reason.  He is depressed.  He has feelings of aggression towards me and his father that he has not acted on, but they are there, boiling under the surface.  It amazes me how he goes out into the world and puts on this happy-go-lucky facade.  Well, maybe not happy, but at least not angry or manic.  When he comes home ...my Lord! He changes into Mr. Hyde.

Then we have Blue, who can be aggressive.  The one person in the world who pisses him off just enough, and he feels safe to hit is of course, his brother.  Blue has been back on a bit of a anxious, agitated, anger roll lately.  He's fine at school.  He's great when it's just the two of us alone.  In fact, we've been having some great times together and some awesome conversations.  However, when you put him into the mix here at home, with Red and we have a great mix for explosions.  Blue wants to control the world.  He really wants to control his brother.  He feels like his brother is clueless, because he doesn't think the same way that he does and he really wants to straighten him out, by yelling at him and trying to control his every move.  Yeah! That's really going to work.

My Facebook status from 2 days ago...

"I love each and every member of my family...individually. It's just when they're together ...I don't like any of them.

#Iknowhorribleright?

#loveisbetterthanlike"

Hubby comes home from the business trip.  When I tell him of the antics that have been going on while he's been gone, he is pissed to put it mildly.  He has so had it with the disruption to our lives caused by Red.  He would really like him out of the house yesterday.  Of course it's just not that simple.

It's really hard to remain calm when your teenager is being, belligerent, loud and extremely disrespectful.  I'm sure it's even worse if you are a man who works hard and believes he deserves a certain amount of respect.  Unfortunately, Red just doesn't have any respect to give, not to anyone in this family.  Especially, if you challenge him and become aggressive when he is already feeling aggressive.

He only respects authority when he feels that they have something of extreme value to take away from him. He respects his job, because he doesn't want to lose it. He wants the money.  And he actually likes his job very much.  He rushes to show up on time, like I have never seen him rush in his life! He's a model citizen while he is there.

He respects police because he knows that they can take away his freedom.  So he never crosses a line with them or when he thinks they may become involved.  I think here, at home, he really and truly feels like he has nothing to lose.  He can not seem to grasp the fact, that he could very well lose the privilege of living here. We have proven that this can happen.  Our oldest son lost the privilege of living here when he no longer wanted to respect our home, or our rules.  He had to get to steppin'! Get his own apartment. Yes. He had struggle harder than he would have if he was able to continue living here.

The ranting and raving got so bad the other day, I actually texted his pastor and asked him, if he knew anyone in the church who would let Red come and stay for a while.  He said he would look into it, but it's doubtful.

Anyways, it's just been a circus around here.  We've been going from one rant to another.  If it's not Red ...it's Blue.  Blue takes out his frustrations on his brother and vice versa.  Much of this is typical sibling crap, it's just on steroids because of their levels of anger.

Then of course, we have my mom here who just can not manage to keep her 2 cents out of anything.  She gets upset, and hold's a grudge whenever Red opens his mouth and pours out a bunch of nonsense.  She takes everything they say and do personally.  She has no life outside of this house, so it's almost like she thrives over the constant conflict ...spewing out personal insults to make matters worse. It's like managing a freakin' kindergarten around here.

Anyways, that's my rant.  I had to get this out of my system so that I can go back to playing the role of Mother Theresa, instead of the raving lunatic that really am.

I will leave you all with this ...this morning as the boys are arguing over everything and nothing at all, I said this to Blue,

"Arguing with Red is like arguing with a big, thick rock with no cracks in it.  You are never going to get through to him.  You are never going to change his mind, so why waste your energy?"

*This actually holds true for a lot of people. Keep this in mind when you're arguing with someone, who just doesn't get it.

Living with the Aspergers Christian

I love my boys with every fiber of my being, but some days they are so hard to like.  I know how difficult life must seem to Red right now as he faces the realities of adulthood.  Change is hard for the average human, for a teenager with Aspergers, change can be excruciating and therefore, very painful for those who love them the most.

At 18, most kids are excited about the possibilities of independence. Who wants a parent around always telling you what to do, when to come and go when you no longer feel like a child?  Red wants the best of all worlds. He wants to remain at home.  He's afraid of leaving.  Yet he feels, that it's us, his parents who need to do all of the changing in order for us to get along.

I have written before about him being the Annoying Aspergers Christian.

His latest sermon is about how we should "never curse" because cursing is a sin.  Well, so is disrespecting your parents but you do that every.single.day.

"But you guys shouldn't try to get revenge just because I'm not respectful."
Um. What? We don't have the time or energy to put into revenge.

The reality is that actions have consequences.  If you run around yelling, demanding, and causing problems, we will not be going out of our way to do anything for you, besides provide the basic necessities of life.  That means no extra rides, here and there.  No stopping to pick up fast food for you. No money for movies and entertainment.

If you are relentless in your preaching and judgement, don't expect that we will not get exasperated at some point.

Can you imagine having your Pastor living in your house, for free and having him judge every single move make?  Oh and by the way, this Pastor is a bit of a fraud.  He has not fully studied the word of God.  Most of his knowledge comes from what others have told him, of course with their own spin on it.  He picks and chooses scriptures that he wants to enforce, without knowing the complete context of said scriptures, all while not walking the walk himself.  You are an adult who has studied the word of God completely and you have enough life experience to know how to apply your faith to your life. Does it sound like fun? This is what I'm living.

What I try to get him to see is his own behavior.  He is continuously yelling and screaming about what we need to stop doing.  Yet, he will not stop and remove himself peacefully, when we have told him in a calm voice, that we no longer want to discuss the subject.  When I have had enough and have asked him repeatedly to stop, but he won't, then he just may end up being cursed out! Now if he wants to avoid the wrath of my anger, simply leave the room! Walk away! You can not keep poking at the beehive and expect not to get stung at some point.

I am human.  I have feelings and emotions.  I can only stay calm and in control for so long.  And believe me, I am the most patient mother he could have EVER been given.

Part of the issue is that he wants what he wants exactly when he wants it.   This of course, is not always practical.  The other part is that he craves attention.  The other, other part is that he often does not know what to do with his free time.  So he comes into a room and expects to be entertained.  If he does not get the reaction that he is looking for than he gets louder and louder, or annoys the dog until he's yelping.  Better yet, he starts in on a subject that he knows we do not want to talk about, repeating himself over and over again, revving himself up, until he gets some kind of commotion going.

He has never been particularly aggressive, but there are moments where he towers over me with clinched fists, aggressively, and loudly, blocking my way so that I can not leave a room or he will not leave a room.

Something has got to give here.  I don't know how much longer I can not continue like this and my husband's fuse is even shorter than mine.

The good news is, that he continues to do well in all other settings including his Adult Transition Program.  He is now working 10 hours a week.  He goes off to events with his church, consistently.
I'm sure all while telling everyone who will listen what a horrible, sinful, cursing like sailors, family he has to live with.

Wandering

Photo Credit -Virtual Day of Remembrance Facebook Event
They want to share this far and wide. 

The first time Red wandered away from me was when he was about three and a half years-old. 

I  am bathing his newborn brother, Blue.  Red is in the bathroom with us at first, but then he wanders down the hall for a few minutes.  I think that he's in his room playing.  I’m at home alone with the boys.  My husband traveled quite a bit for work.  At the time, he was working as a contractor for the Air Force and would travel all over the world ensuring the safety of their computer networks.  While I was home ensuring the safety and care of our children.  At least I was supposed to be. 

Suddenly, the doorbell rings.  I wasn't expecting anyone this time of night, un-announced.  I grab Blue out of the bath, wrap him in a towel and trepidatiously open the front door.  It's my neighbor from two doors down, with baby Red in a t-shirt and diaper.  

Mortified! What kind of moron does she think I am? How in the hell did he get out the door?  It turns out, he went through the kitchen, through the laundry room door, and underneath a crack in the garage door. Beyond being mortified, I was grateful that she was so sweet about it.  So many other scenarios could have played out.  And for so many, they have.  The very worst has happened for so many children on the autism spectrum.  

Of course, I knew nothing of autism at this time.  All I knew is that my child did not communicate with me the way that I expected him to as a toddler.  He talked in garbled language that I did not understand.  He had been diagnosed with a speech delay at the time, but that was it.  No talk of autism. In fact, I don’t think I even knew what autism was or how big of a spectrum it actually is.  This was 1999. 

I knew nothing of this wandering scenario that I would eventually face again as the years went by. 

For so many families, the child isn’t found within a five or 10 minute period.  For many, they are never found alive.  This very well, could have been our family.  

Today, April 1, 2014, in a virtual candlelight vigil, we remember the many children with autism who have lost their lives after wandering. 

From the Facebook Candlelight Vigil April 1, 2014 Event Page...

The Kennedy Krieger Institute reported in a 2011 study that up to 48% of all children with autism will engage in wandering behavior or "elopement," which is defined as the tendency to leave a non life threatening space and enter into a potentially dangerous one, and is a rate 4 times higher than their neurotypical siblings.

The Krieger Institute also reported "35% of families with children who elope report their children are “never” or “rarely" able to communicate their name, address, or phone number by any means."

In 2012, the National Autism Association reported that "accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement."

This vigil is being organized to spread awareness of the very real issue of wandering behavior in autistic children and the unspeakable tragedies that can, and have occurred as a result. 

Please join us in respectful remembrance of the children who have died.

For more information on keeping our children safe visit autismsafety.org