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Sunday, July 19, 2015

Bed of Roses

Photo Credit:
“Life is not a bed of roses, but at least there is a bed.” -my personal Facebook status one of the nights Red was away. 

The peace in the house is a good thing. The fact that I’m not running around town like a chicken with her head cut-off is nice. The breathing and thinking space is a welcome change. However, it’s been replaced by worry about where he is. How is he feeling? What happens next? Why does my child have to struggle so much? Why can't he just be happy? 

He actually asked me that question during a phone call the other day, “Why does my life have to be so hard?” Of course, I have no answer. Why does MY life have to be so hard? Why are many other people’s lives much harder? Why can't I plan a vacation this summer because I'm here dealing with this heavy shit and I don't know when the nightmare will end? 

Yesterday was the darkest day I have experienced since, I can’t remember when. As a matter of fact, I have to say that this time period in Red’s life has been one of the most difficult periods …ever, in raising hm.  He’s like a bull in china shop. He’s very big, strong, stubborn, hateful even.  He is an adult by definition, but a child in maturity and decision making ability. There is no taming him into what I want him to be. He is fighting me every step of the way.  And of course, I’m not the most intimidating bullfighter that the world has ever seen. He knows my weak spots and he knows very well how to play the game of making me think that he can’t help certain behaviors when he is actually in complete control. He's been playing this game for so long, he knows how to use his autism as a weapon in his arsenal. 

We had a family therapy session a few days ago. My child walked in (yes I know he’s almost 20)  looking tired and wounded. He was visibly anxious, worried, his legs shaking back and forth, back and forth. During the session he went from beginning to take some responsibility for his behavior and actions, and then back tracking —blaming everything on us.  

It was the hardest thing ever to walk out the door and leave one of my limbs behind. As my husband said, “He’s not a baby. This is adult real life. We can’t protect him from everything. He needs to see the reality of life.” I did not want to hear his words of freakin’ wisdom.  I just wanted to cry from the depths of my soul without listening to reason. “Don’t try to fix it. Just don’t. You can’t,” I said. Just let me feel this pain.  You can’t take it away. You can’t make it better with your practicality and rational thought. I knew he was right, but for me, in that moment, none of it mattered.  All I could see is my child …a part of me, in pain. I saw desperation, confusion, discomfort, anxiety and I physically felt all of it.  And the worst part, is there was absolutely nothing I could do about it. Nothing. 

We checked him in to what appeared to be a lovely facility. The building was clean and relatively new, located on a quiet oak tree-lined campus on a few acres of property. The nurse who did our intake assessment was tuned in, helpful and professional.  You know how some people can give you the feeling that they are just doing a job and don’t give a shit about you.  They look through you instead of at you.  Well, I didn’t get that energy from her. It was like she saw me. She saw him and understood what our family has been dealing with. 

Only after my first visit to see him did I realize that even though the facility was lovely, the pain experienced inside those walls, was anything but. It was life. It was cruel, adult reality. There were other people there who were dealing with their own monsters and skeletons and it just wasn't pretty. 

When I finally made the decision to move forward with getting some much needed help for Red, I was exhausted by the behaviors we had been dealing with over the past few years really.  I always wondered what was really him and what behavior was exacerbated by the medications.  Did he even really need everything that he's taking? It was my dream to actually take him off of everything and start over.  I’m not a doctor, but sometimes I play one in real life. I read and research like a medical student and I feel like I know my boy better than any doctor ever will.  Sometimes, I think I know him better than he knows himself.  He’s not always in tuned with his body.  I’ve had to teach him to pay attention to how his body is feeling and reacting and that’s still a process. 

(By the way, I urge you -if you don't go for guardianship of your young adult on the spectrum, at least attempt to get Power of Attorney, especially Medical, so that you can be involved in helping them make the best decisions for themselves.  It's much cheaper and easier to attain than full guardianship.  Personally, I feel that it gives them more dignity than taking away all of their rights. Of course, there are cases where guardianship is the only choice.) 

I had talked myself out of it, and back into moving forward a million times. A huge part of me felt relieved to finally be addressing his medication issues in a controlled, safe environment. I hoped that some more intensive therapy would help him to see his life more clearly. He’s been incapacitated by fear and anxiety, which was showing up as anger, disruption and disdain for our family.  Knowing that I was probably (key word probably)  doing the right thing, didn’t make watching the process any easier. 

I am a creature of habit and comfort. I have been described in the past as being like a cat. I love to cuddle up all by myself, in my bed, on a comfy chair, in a hammock or wherever. I take my down pillow to most places that I spend the night. I even have a favorite travel blanket that goes with me when I’m away from home. My home is not luxurious by far, but it is quite comfortable.  As much as Red makes me crazy, he is by definition an extension of me.  It wasn’t easy to see him outside of his comfort zone, looking so tired, defeated and confused. However, it was the beginning of a process that we both needed to go through. Although the experience of having him away was extremely difficult and humbling for both of us, so far I will say that it was worth it. 

While he was away, he came to the realization that his life here at home is not as horrible as he has been perceiving it to be.  In fact, although he has challenges, he is really blessed beyond measure.  He met people who had much more serious, intense issues and problems than the ones that he faces. There were kids there who have suffered real abuse and have no loving family to return to. He saw other people’s scary looking, sometimes violent meltdowns. It opened his eyes to see how his anger can look to others.  He was approached by someone in distress who began yelling and cursing at him. He did not react. He walked away. He was able to demonstrate restraint under extreme circumstances. He was able to hold it together in the midst of chaos. Surely if he can do that with a stranger, he is capable of doing it here at home with his brother.

He had no outbursts of his own while he as there. The biggest issue was his anxiety and asking questions over and over again.  He was trying desperately to process the therapy and worries about his life and his future. He was social with the more kind hearted among the group. He  attended group therapy sessions and learned that lots of other people's lives suck way more than his does. He now seems to have a greater appreciation for what he has here at home …at least for now. I realize that we are probably in a honeymoon period., but I’ll take it and hope that it lasts.  

He's on contract with us.  He knows that certain behaviors will not be acceptable. He has proven that he can hold it together when he wants to, so he will be expected to do it here.  We're not buying the bullshit any longer.  In turn, as a family we have to all get better at showing him love and support —being forgiving of annoying behaviors that are attributed to autism.  

When we met with one of the doctors on staff before we brought him home,  we were cautioned about bringing up group homes or moving out for a while.  Red is is feeling very abandoned and unloved. Actually, traumatized by it. His behavior has been pretty damned unloveable, but the doc sees this as his attempt to get attention by any means necessary.  

We are looking into additional therapy and supports that will help him to grow into a more independent adult, but not discussing every detail with him until we have things in place. He needs to worry less about the big picture, so that he can focus on just taking one step forward at a time, not becoming overwhelmed in the process. As a family we are trying to make him feel supported and loved,, while being firm about our expectations. It's likely that we will need therapy as a family to maintain that balance. 

Then of course, I need my own personal therapy.  So basically, what I'm saying is we should just have a therapist move in with us. 

Thank you so much for so many of you, friends, family and readers who have reached out to let me know that I am supported and loved during the difficult times. Your phone calls, posts and private messages carried me through. 


In this post I tried to express what we went through, while avoiding some of the details.  I am writing with Red's permission. He hopes to make a movie about his life some day, so that people will know what it's like face the challenges that he has faced. 

I love your comments and feel free to share this if you think it may help someone. 

Friday, July 10, 2015

Life In Living Color

Recently, I had to make some tough decisions about Red. It was really hard for me as any decision is these days. My capacity for decision making has been severely handicapped in recent months, maybe even years.  Being in a constant state of panic can do that to a girl.  My anxiety has been through the roof!  I can think  something to death and back to life again, and still can’t decide whether or not to move forward. What if this happens? What if that goes wrong? What if I ruin the rest of his life? 

So Red is out of the house, temporarily in a therapeutic environment getting some much needed help. I can not and will not get into details of where he is in order to honor his privacy. I will say this, for the first time in a very long time. I know what it's  like to think for more than just a few minutes, in my own home without being interrupted. This is a peace that I forgot existed.  

There hasn’t been one raised voice. There has been no screaming …no ranting, no physical fighting. I slept the other night for the first time in weeks without having dreams of fighting someone. In my dreams, I’ve been fighting with everyone for weeks now. I could sleep 8 hours and wake up tired like someone had just kicked my ass. The first night he was out of the house, I woke myself up laughing out loud from a silly dream. No irony there! 

My emotions are mixed.  I am ambivalent, sad, scared, happy, relieved. My problems are not solved.  We are just taking a first step in the right direction. More decisions await me which I am not looking forward to dealing with but for now, I can only take one day at at time.
Red -Age 3 Hallween
I have moments when I wonder, did I to it all wrong when it came to raising Red? Did I come to the rescue too many times?  I know for sure that I spoiled him.  But the truth is, I didn’t raise him any differently than I did my other 2 sons.  Blue is very independent despite my indulgence.  My eldest stepson, who I raised from the time he was 5 years old is independent as well.  They all have their issues, but Red is just different. He has been from the day he was born. 

The truth of who Red is as a young adult is being shown to me more and more each day. My eyes are open and I am seeing things that I have never seen,  as I pull back on what I’m willing to do for him.  He fights back with all of his strength.  As it all plays out, a light shines on the truth of what needs to be done to cut this cord of co-dependence.   

There is guilt.  There is sadness, but at some point, you have to let go of situations that you cannot control. It's not easy when it comes to your child, even when your child is a young adult. My love for him cannot be described, maybe not even understood. He is a part of me. I feel his pain and anguish.  But I know that I have to let my bird fly.  I may have to push him out of the nest even though he thinks that he can’t. I know better. Not only that, but I have another bird here that deserves a mother who is present and always at the end of her rope. He deserves more than being mothered on auto-pilot because my light is being stamped out. 

I woke up the day after Red left, not knowing exactly what to feel.  The first thing that morning, I read these words written by a dear friend of mine and fellow Aspergers Mama, Johanna on her Facebook group, "Faith, Love and Inspirations"...

“We are called to be who we are and who we are becoming, but we are not called to be everything to everybody.
We are not even supposed to be the magic band aid that fixes everything for any other somebody.
We are supposed to be the one's who keep our own lives in order and in balance so no one else needs to come in and be our shining knight on the white stallion. 
Even Mother Theresa did not aspire to help everyone. From what I have read, she simplified her own life down to a few essentials and THEN devoted herself to helping the one in front of her. 
If we have a high needs dependent child, that would be our assignment, but only after taking care of ourselves. 
Mother Theresa did not live such a long life by denying her own physical, spiritual, emotional or medical needs. She simplified her wants to meeting her own needs so she could serve. 
As wives and mothers, we are NOT supposed to try to *keep everybody happy*. What a waste of a human life- trying to keep someone else from melting down-- NOT my assignment. 
I did, as my mother did before me, try for decades to keep my people happy, until I realized that all my accommodating others was erasing me. 
I decided I wanted to be me right out loud in living color again. I wanted to meet my own needs, exercise my right to be, to be heard, to have a say, to take care of me and nurture me-- because it wasn't anyone else's job to do that for me and-- having no infants or toddlers left among my children-- It was no longer my job to do that for anyone else. 
That is how I would describe learning to have Boundaries. The funny thing is, if I had NOT begun to exercise healthy Boundaries, I would never have stopped trying to keep everyone else happy-- and I would never have begun to recognize how dysfunctional all my people were always on the verge of a meltdown or withdrawing from basic life responsibilities and expectations. 
I would have NEVER seen that there was a pattern to all the craziness that had the diagnostic label of Asperger's Syndrome.
Boundaries in dealing with my family saved my life, but I still have to choose daily how to set my boundaries with other needy people. 
I have stopped helping everyone. It was never my assignment. I am my first assignment. 
When my basic needs are met, I am in a much better place to be of help to someone else IF they are my assignment.”

Johanna was speaking directly to me when she wrote these words and they touched my heart and made me think about the situation that I am facing. I have to take care of myself. As mother's we all need to be reminded of that. So, I thought it was important to share her words with you. 

When we have babies, we don't think about how hard the transition to adulthood will be.  Of course, we never imagine  having a child with special needs and all that that entails. Some things just can not be imagined.

Johanna also occasionally writes on her blog, "Faith, Love & Inspirations." Please check her out and consider joining her public Facebook group. 

Monday, July 6, 2015

A Fortunate Slip -Guest Post

By Leo, of Autism Blues 

A Fortunate Slip of the Lip

I could have sworn he was downstairs. Really. I wouldn’t have said what I did if I knew he was in his bedroom—well within earshot. As Katie and I were going up the stairs this afternoon, I was recounting how this kid (#4, nine years old) had taken such good care of his younger brother (#6, six years old) at the neighborhood pool. If I had known he was in his bedroom, at the top of the stairs, changing out of his bathing suit, I would not have said, out loud:

“And [this kid], our autistic son, did really well today. So much for the old myth about empathy!”

“Dad? What does ‘autistic’ mean?”

My heart sank. It was probably the first time he ever heard himself described as autistic

It’s not that I was hiding it from him. I had been wanting to tell him for some time now. I just didn’t know how to do it. And I didn’t want to manufacture some Hallmark moment where there would be this big reveal and a whole new understanding. I wanted it to be natural and, well, right. (Plus, I was also a little chicken.)

No Good Opportunity.

You see, he’s one of six, and they’re all autistic. His two older brothers and older sister already know about their diagnoses—and they found out more or less by accident as well. At least, it didn’t happen on my terms and in a way that I wanted it to. (Insert chicken squawks here.)

So autism is pretty much the lay of the land in our family, and that means he doesn’t really stick out at home enough to wonder why he’s different. All the kids present a pretty consistent profile of being on the higher-functioning end of the autism spectrum, so he’s got a built-in tribe of autistics to relate to. 

He also manages to blend in pretty well with his peers at school—at least so far. He’s only in fourth grade, too which means that his classmates are too busy running around on the play ground to pay much attention to his quirks or language glitches. Plus, he works hard to try to fit in. It’s not perfect, and it can lead him to come home tired, moody, and explosive. But it works. 

So there didn’t seem to be any need to explain autism to him. (Squawk!!)

Stumbling into The Talk.

Anyway, there I was, completely unprepared for the talk. But there was no getting around it; I had to answer his question. 

I brought him into our room along with Katie, and asked him, “What did you hear me say?”

“You said I was autistic and I have empathy.” 

“That’s right. Do you know what empathy means?” (I was stalling for time.)


“It means that you care about how other people feel. It means that you can feel their feelings, and you want to help people who feel bad. That’s a really good thing, and I’m so glad you are like that.”

“Okay. What about autistic?”

I hesitated, not sure exactly what to say. Then Katie stepped in and saved me. “It means you think outside of the box.”

O merciful intervention! I knew that this kid thinks too literally to grasp metaphors like that. But that was a good thing; it gave me something concrete to react to. I didn’t have to come up with a complete explanation out of nowhere. The talk was happening all by itself.

Autism Is. . .

So I told him that “outside of the box” means that God made his brain a little different than most other kids’ brains. I talked about the cool gifts this brain gives him, like his laser focus on math and cooking and singing. He’s got some real talents there. Then I talked about challenges like how he can have a hard time putting words together or how he sometimes struggles understanding when someone’s talking to him. I hit on a couple of others, like emotional regulation and his need to jump around and get giddy sometimes. Then came the Big Finish.

“So there’s something a little different about you. That doesn’t make you weird. Just different. Autism isn’t a disease or a sickness. It just makes you special. Got it?”


“Any questions?”

“No. Can I go type on the computer now?”

“Sure thing. Knock yourself out.”

No Drama.

And that was that. No fuss. No drama. No nothing. None of the baggage that the world gives to the word autism. None of the baggage that I can give it, either. Just another word to help him describe himself.

In a way, I’m glad that it happened like this. I didn’t have time to worry about developing the perfect speech. I didn’t have the luxury of turning it into a thing, which might risk emphasizing the difference more than I wanted. I didn’t have enough of a chance to screw it up, either.

I also liked the way it became just another thing that happened today. Mind you, I’m not sure how much of it he really grasped. But I didn’t want to push. It doesn’t really matter anyway. We began a conversation today that will unfold and deepen over time.

No Big Deal.

So there you have it. My son found out that he is autistic, and he’s doing just fine. An inopportune-but-opportune moment presented itself, and we did our best with it.

It may not sound like the best approach, but there’s something really appealing and “normal” about things like this happening within the natural flow of everyday life. It helps the kids see that it’s not a big deal. It’s one facet of who they are, and it has no bearing on how much we love them or how much dignity or value they have—in our eyes or in God’s eyes.

That’s four down, two to go. I think I’m getting the hang of this thing. So bring it on!


Leo is one of my favorite autism dads. You can find more stories about his family on his blog "Autism Blues" . He also runs a Autism Blues Facebook community 

Leo and his wife Katie live in Maryland with their six children, ages 6 to 15, all of whom are on the autism spectrum.  Yes you read that right! Six children on the spectrum.  I am truly inspired by their humor and grace as they parent their six children.

Wednesday, June 17, 2015

Top 10 Reasons You Can't Live Here for 5 Years

The other day you asked me why you can't live here at home for another 5 or 10 years. There are so many reasons, I don't know if I can count them all, but here is a good start.

First and most importantly...

  1. You may not live to see another 5 or ten years if you continue to live here. I know I'm much smaller than you, but I may end up killing you or at least hurting you seriously because of the way that you treat me. Okay I'm kidding. Sort of...exaggerating. Okay, the point is, I don't want to go to jail. 
  2. I may not live another 5 years if you live here.  You stress me out! My heart can not take another 5 or 10 years of you and your yelling, following me around and harassing me in my own home.  The only time I have peace is when you are not in this house. You and I seem to make each other miserable. I always love you, but honestly, I don't like you very much right now.  I will like you and love you so much more if there was more distance between us. Dad and I would be so much happier to help you if we see you taking steps towards taking care of yourself!  We still help your older brother to this day when he really needs it. That's what family does. Have you seen how much better he gets along with Dad now that he doesn't live here?
  3. You want to get married someday. If you never learn to take of yourself, you will never be able to take care of a family.  No one wants to marry a mama's boy. Walking around talking about, "Mommy! Mommy! Mommy!" A good woman wants to marry a man who takes care of his business.
    Photo Credit 
  4. I am to you,  like kryptonite is to Superman. When I am around, you feel weaker than you actually are. When I'm not around, you feel stronger, empowered to do more for yourself.  You don't want to spend your life, waiting for others to help you. You have to help yourself! You want the most full life possible.  This means being comfortable financially, being able to travel, take care of yourself and your family someday.  I can not continue to give you a crutch to hold onto, if I do, you will never walk freely on your own.  
  5. You are not disabled. You are differently abled! You can absolutely do anything you set your mind to. You can not let fear keep you from living a full life. You have the ability to do so much more than many of your peers that you're always comparing yourself to.  Have you ever noticed that you are one of the highest functioning people in most of the programs you're in? You have been blessed with more ability than many other people. Out of your close friends, how many have kept a job for over 1 year? How many have taught themselves a skill like video editing? How many have earned money from their own business? You are intelligent! You can do anything you WANT to do. You simply have to WANT to do it!
  6. Everything you try, you succeed.  Do you realize that your first answer to everything is NO? "No I don't want to do it! NO! I'm not doing that! No! I'm not eating that." That is all about fear! You have to try it to know if you like it. You have always been more likely to try things when you are away from me!  You try new things when you travel to see family. You wanted this film internship.  You were scared to apply for it. It would mean changing your schedule. You were sure it wasn't going to work out. It did! You were accepted! There is always fear in the beginning. Change is scary, but you always come through it! You wanted to learn videography, you taught yourself.  If you want to live more independently, you can do it! You just have to walk through fear. 
  7. Adults don't like being told what to do. You are and adult, but as long as you are here in our home, you have to follow your parents rules. We will always have a say in what you are doing. Living on your own, gives you freedom from your parents (who according to you, know absolutely nothing.)
  8. There are too many people in this house that you don't get along with. You fight with everyone! Me. Your brother. Nana, Harry (the dog) and Dad! If you haven't gotten along with us in almost 20 years, chances are, you won't start now. You do however get along with friends and peers. You will get along with a roommate or a group of peers better than you will EVER get along with your family! 
  9. You are not happy here. You are happiest when you are away from your family.  You are happy at work. You are happy at church and when you are with your church family. You are happy when you are around your friends, and people closer to your age.  You are happy when you spend time with Mr. Kevin. You are happy when you travel and spend time away from us. Why not have more of that?  Truthfully, freedom is happiness! Trust me. I'd give anything to be free and on my own! The time I lived on my own was the best time of my life! Such a silly girl to give that up for this.
  10. Life struggles make you stronger and help you learn. Life can't always be easy, or you will never learn anything. Challenges are opportunities to learn. An easy life teaches you absolutely nothing. Living on your own figuring out your bills and your life will be challenging, but it will definitely lead to you being a strong man and less of a little boy who is always walking around talking about, "Mommy! Mommy! Mommy!" 
I say this with all the love in my heart. Love that you will see a lot more of, once you move out of my house!

Like this. Share it! 

Friday, June 5, 2015

A Brilliant Mind -Part Deux

It must be a miserable thing when the world doesn't work according to the way you think it should as in, it should really revolve around you.  Work schedules should be convenient for your need for extra sleep or lazing about the house as you please. Yet, you should have all of the money necessary for whatever your pleasure.

People should be at your beck and call -waiting by the phone to find out what you need.  Since they have cell phones, they should be able to answer your call 24/7.  When they answer, they should tell you exactly what you want to hear. You don't want to hear what is truth for the rest of the world. That does not apply to you. The reality that the rest of the world lives by is far to inconvenient for you to deal with.
One of the thousands of text message conversations with Red

While we're at it, let's face it, other people really should not have needs or feelings if they disrupt your needs being met at every second of the day. Other people should never be tired or sick.  Why should they need any rest? Why can't they be available 24/7 to answer your every question and listen to your every thought for the 9 millionth time. Too tired to chauffeur you around? That's ridiculous! All you have to do is sit there and push the pedal. How hard could that be? It's not going to kill you. Of course, this begs the question, How would you know since YOU'VE NEVER DONE IT?!

Why on earth would parents need to go on a date or hang out with their friends? Why can't they just be there for you in case you need someone to yell at?

Know anyone who thinks this way?

Well in my last post, "A Brilliant Mind," Red found out that his hours at work had been reduced from 20 to 10 hours per week. I was not happy because that would give him too much time on his hands to sit around the house, idle, bored, inevitably bugging the crap out of me.

His brilliant mind told him that the solution was for us to reduce the amount of rent he pays. So NOT Happening Dude!

The rants and rages went on for days.

He spoke to his Adult Transition teacher about it. She suggested the same thing I did. That he open up his availability at work so they would give him more hours.  He had his availability pretty limited to what would be convenient for him because after all, he needs time to his self that he can be bored and bug the shit out of everyone in this house.

He was livid when he came home from the meeting with his teacher!
"She made me put down that I want to work on Saturdays! She made me do it! If I didn't do it, she was going to yell at me! I'm afraid of her, so I just did it!"
This went on all day long!

Later that evening, he spoke on the phone with another adult mentor who gave him the same story and advice that his teacher did. He listened but was not happy.

The following day he met with his Occupational Therapist.  She is a very soft spoken,  lovely woman who has lots of experience with teenagers and young adults with various abilities. She also has had personal experience with her own children who had special needs. (They are now adults and all out of her house.)  She wrote me an e-mail after their appointment:

"My commits to him regarding his work decision.
You are the one who must live with the decisions you make.
Less hours is less money.  You’ll need to adjust for that.
Life is not predictable, you need to learn to practice flexibility.  
Have faith in yourself to handle it.

He got upset with me a few times, face flushing, biting his lip, and tears in his eyes.  He held it together, took some deep breaths and calmed himself.  I was proud of the control he managed.  He was able to reflect, If my Mom had just said that to me, I’d probably be yelling about now.
He’s starting to show some insights and maturity. "

He held back with her, but continued to give me hell for several days.  He hates change! It brings about fear and anxiety.  It just really pisses him off that the world doesn't work perfectly, according to his plans.

Changes happen and you have to roll with them, but that feels impossible for him. He needs to work through all of that, mostly by yelling at me!

He did however, keep his additional hours of availability for work open. When he received his new schedule for next week, he was scheduled for additional hours, consistently, in the mornings.  No Saturdays ...yet!

He was sick with a pretty bad sore throat the day he got the new schedule. He seemed to take it all in stride, keeping a very calm demeanor. Either that or his throat was hurting so bad, he didn't want to scream. Either way I say,

Dear God,

Good lookin out!  You always come right on time.

Friday, May 29, 2015

A Brilliant Mind

"Boredom in teenage boys is a powerful motivation for chaos." -Wes Moore, The Other Wes Moore 

School is out next week. No more Transition to Adulthood classes. No more volunteering at the high school. Then last night, this...
"Mom...I got my hours from work and they've been cut to 10 hours a week." 
He's been averaging 20 hours. He could stand to do at least 30 during the summer. He needs to stay busy. Boredom for him means trouble ...chaos. 

He does have a 3 week summer film internship, which is awesome but he needs to fill the rest of his days with activity. And by activity, I mean things that don't include me! 

My immediate response was panic. Great! What in the hell is he going to do with all of that time on his hands?! 

"Why do you think they did that?" I say, trying to sound calm.  
"It's the summer. Some college students are back at work. We hired more people, so they cut everyone's hours." 

Thats's bullshit! That doesn't make any sense! 
"You've been there for over a year solid and they cut your hours to make room for someone new? Or someone who just came back? Does that sound right to you?" 
Either he needs to get this fixed this or he needs to work somewhere else. But how do I approach this with him delicately? 

"Well, what are you going to do for money? After you buy groceries, you won't have much left for entertainment, dates, movies, eating out." I ask casually, trying not to change my expression or the tone of my voice. 

He looks at me like I have 3 eyes. "I don't know! But I don't want to work Saturdays or Sundays. I need time to myself." 

"Time to yourself? To do what? You won't have any money." Still trying to sound calm. 
 He hisses at me, or maybe he growls, I don't remember. He definitely gives me that angry look. He's getting pissed! 

The conversation goes on. I excuse myself. I tell him it's because I don't appreciate his tone.  It's quite upsetting and it's the second time in one evening that he's used it towards me.

He finally decides to text his boss and tell him that he would like to have more consistent hours and that he would like to work at least 20 hours per week ...but hopefully during the week. (Because he doesn't want to work Saturdays.) 

WTF? You need to work whenever there are hours available! I think, but bite my tongue and do not say. 
What I do say is this, "Well, I will not be around on Saturday's and Sunday's to transport you anywhere. I plan on doing some traveling this summer. You won't have any money. So that "time to yourself may end up being here, alone with Nana." He really didn't want to here that! 

Cut to this morning before work...
"Is there anyway you can cut my rent down because they cut my hours?" 
Bahahahaha! You're kidding me right? Where's the hidden camera? 

"If you were in an apartment, do you think they would care that your hours got cut? Would they be like, Oh hey! that's cool. Just pay what you can.

"I know that're not teaching me anything by making life harder for me." 

"Actually, I'm teaching you how the real world works.  If I make it comfortable for you to work less hours, what incentive would you have to work more?"
"Well, I need Saturdays to myself." 
"To do what? On Saturday mornings you're knocking on our door when we are still sleeping. Or you're out here on the futon flipping the wooden arms up and down to make noise. By the middle of the day you're bored and when you're bored, you start to get into trouble, arguing and fighting with everyone. Do you like money? Why wouldn't you want to be busy and make more money?" 
"I need time to relax." 
"You know what son. I have to give it to you. You are really smart!" 
"What do you mean?" He asks with a half smile. 
"It takes a brilliant mind to come up with that solution. Cut your rent down? That's brilliant! It's not going to work, but it lets me know your'e really good at problem solving." 

Who do I look like? Boo boo the fool?  

Monday, May 25, 2015

The Questions

I have been plagued all day long with eight questions. Eight questions asked over and over again, in a loop. All.Day.Long.

It's Monday, Memorial Day. Here in central Texas it has been storming all night and all day. There have been flash flood warnings. There have been bogus tornado warnings in our direct area at least 3 times today.

Around noon Red asks me if his therapy appointment is on for today. I told him to call his therapist. His therapist calls back and says, "Yes. I'm working today."
Well, we have flash flood warnings and I'm not about to get into my car with Red to drive forty minutes to an appointment. I told him to let his therapist know we would not be coming due to the flooding in our area.  I  suggested that he ask him if they could just talk on the phone. That wasn't possible.

So then it began, the questions. The same questions that he has been asking for months. The same questions that I have answered backwards, forwards and upside down. The same questions that he has asked countless other resources and has received again, basically the same answers.

He followed me around all day long asking these questions.
I answered them once.
I hummed, "Kumbaya."
I wrote my own version of it:

Come on by Lord! 
Come on by. 
I'm about to 
start to cry.
Come on by Lord. 
Come on by. 
Oh Lord! 
Come on by.
Ain't got no secrets Lord.
Ain't got no lies
I'm about to 
start to cry. 
Give me peace Lord. 
Help me out.
I need you Lord 
Without a doubt! 
Come on by Lord! 
Come on by!
Oh Lord!
Come on by.

I sang.
I colored in my coloring book.
I ignored.
He continued for hours.

Finally, I made him write the questions down. I answered each of them in writing.

1) How can I buy equipment if I have to pay gas and car insurance if I had a car?
You can only buy equipment when you make extra money. Your job and disability can help pay for your life, including a car or transportation. 

2) Can I still save up to buy equipment if I had an apartment and a car?
If you have an apartment, you can only buy equipment if make extra money from video editing or working more hours. You can only buy things when you have extra money after all of your life expenses are paid. 

3) Do I have to pay insurance if I had a car when I’m living with you guys?
We will only help you with car insurance if you don’t have enough money to pay it yourself from your job. We will only help you when you have no other resources for money. We will not pay your bills so that you can keep buying equipment. 

4) What number can I call when I’m having problems at home?
I don’t have a number for you to call. You can ask your case manager if she has a number for you to call from home.

5) Do you like to push my buttons?
I use jokes and laughter when you are trying to push my buttons. I joke around when my nerves are shot to hell, instead of yelling at you. 

6) Do you hate me?
I do not hate you. I HATE YOUR BEHAVIOR!

7) Why do I have to have a hard life and not get along with my family?
You cannot continue to stress me out all of the time and live here. I am no longer obligated to have you in my house if my health and sanity are in danger.  

8) Do you want my life to be horrible and to ruin my life?
I want your life to be good. I want you to be independent. I want to live in peace. Your life being good does not depend on THINGS that you BUY such as equipment. THINGS do not make you happy. You are never happy even when you buy things for more than a few minutes. What makes you happy comes from your relationship with God and from helping others. You also seem happy when you are with friends and your girlfriend or anyone other than this family! You are NEVER happy when you are in this house unless your friends or girlfriend is here. I can not make you happy.  


Ten minutes later, he was back at my bedroom door.
I need to talk to you.
I need to see you.
He knocked, louder and louder.

I get it.
I can not help him anymore.
It feels like he is trying to drive me crazy and he's doing a bang up job.
It's 9 p.m.
I have heartburn.