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Friday, November 13, 2015

Unusually Normal

In recent weeks since my son  moved out of the house , I’ve gone through a range of emotions…
from fear to relief,
happiness to emptiness,
anger to empathy.
Moments of feeling pissed off,
and invaded…
to moments of feeling unusually normal.
Is that even a thing? Unusually normal?
It must be, because I’ve felt it.

When the house is eerily quiet, I think to myself, Wow! This must be how normal people feel in their own homes …like all the time or at least, often. 
I can’t believe I lived in total chaos for so many years.
This quiet is weird, heavenly, but weird.

I’ve been able to watch some of my favorite television shows. I'm actually all caught up on "Scandal."
I even watched one of my favorite political talk shows and was actually able to follow along and keep up with what was being said, without thinking to myself, Yada, yada, yada. Who the f*#% cares? I got my own problems.

I spent a couple of Saturday afternoons watching back to back movies on HBO, without interruption. Well, Blue watched some of them with me so there was his occasional question, but not intentional disruption. (Don't tell him I told you, but he even watched "The Devil Wears Prada" with me. )At first he protested. "This is ridiculous! She's so mean." Probably reminded him of his Spanish teacher. But then, he would not leave the room until it was over. I loved every moment of him watching with me.

When Red was here, if the focus was not on him, he found a way to make it so. He would come into the room and say something like, “Why are you watching this crap?” Or he would just start talking about his subject of interest, without any consideration for what was happening in the room before he walked in.

A quiet, peaceful home, watching television, reading real books —these are simple pleasures that most people take for granted.
These simple things I have not been able to do for years, at least within the comfort of my own home, with any sense of regularity.

I shared some of these feelings in therapy today. Have I told you how much I love my therapist? 
She makes me think about myself for a change. We dive into my feelings and she redirects me from judging myself. Instead, she helps me to congratulate myself for both simple and extremely complex things that I have accomplished. She helps me to acknowledge the transition that I'm going through. How I'm trying to let go of control over his life after so many years of pulling all of the strings and being the fixer.

She encourages me to take care or myself —to reconnect with who I am, other than servant to others. She has confirmed what I already knew, I’m living with P.T.S.D (Post Traumatic Stress Disorder). I am recuperating from years of what was to a degree, an abusive relationship.

Today, she said something quite profound. “Instead of feeling guilty because you’re finally having some peace, doing things for yourself after all of these years, how about you look at it like, you’re finally showing yourself some compassion.

All of these years, I’ve talked about needing therapy for myself, while I was too busy making sure that everyone else got every kind of therapy available to man.
My oxygen mask was withered, frayed, all cracked up.
There was no steady flow of air.
I was gasping, while everyone else was breathing clearly.

Well, not anymore.

Tuesday, November 3, 2015

"I love you mom."

You must know how rare it is for a teenage boy to voluntarily say, “I love you mom." It is probably even more rare for a teenage boy with Aspergers to say it, unsolicited and actually mean it. Imagine my shock when it happened yesterday. 

I picked him up after a rough day at school. He had been working on a group assignment over the past couple of weeks for his Spanish 3 class. Group assignments have never been a picnic for Blue. I’m sure the same holds true for many people with Aspergers. There’s all of that social communication that has to take place, along with compromise and listening to other people’s ideas. This can prove to be quite difficult for a person who usually thinks that his ideas are best. However, collaborating with others is a skill that we all eventually have to use in life.

I must say, he’s come a long way working on group assignments. He took this project on like a champ. He was being a leader at the same time, willing to accept and actually solicit ideas from peers. Unfortunately, they were not all as accessible to do their parts of the project.

The blooper in the mix of this assignment was not arguing with peers, but dealing with a less than flexible teacher. A teacher who I may punch in the face, if we ever cross paths. Most of his assignment group are in the high school band.  They had an intense week of performances, competitions, travel and rehearsals. Blue having empathy for his overworked team mates, tried to take on the brunt of the work for the project. A task that was nearly impossible to do. 

They ran out of time and the project was not complete. The teacher supposedly said, she would give them extra time. She then later decided that their band obligations were “not her problem." So, she recanted her offer. At least this is the way that Blue describes the situation. Who knows what kind of miscommunication actually took place. 

He called me that morning fuming about this teacher! What I noticed was that even though he was very upset and probably wanted to call her every name in the book, he didn’t. He didn’t yell, scream or curse. I think he may have said something like, “I hope she gets run over by a truck.” Not really …I’m the one who thought that.  

A few years ago, he would have been screaming, “Come get me out of this hell hole! This teacher is a total bitch!”  

Instead we did some quick problem solving...

“Who can you speak with to help you communicate with this teacher?” I asked.
“I looked for my tracking teacher, but she’s not in her room.” 
“Do you think you could find Ms. B.?” (the Special Ed. Lead) I asked.
“Try to do that, I’m sure she can help you communicate,” I said.

This is progress for both of us. I wanted to call that teacher and give her a piece of my mind and a reminder about his I.E.P. and accommodations. Instead, I gave him the opportunity to advocate for himself, which is an important skill for our kids on the spectrum if they want to go to college. 

I read a great article about preparing our kids for college yesterday on titled, High School Sets Up Autistic Kids to Fail In College -How to Fix It. The article clearly states that our kids need to be a part of their I.E.P. process and they must learn self-advocacy. Colleges won't even allow parents to have a say. 

When I picked Blue up from school, he looked exhausted. Thanks a lot daylight savings time and the teacher who gave my kid a tough time. 
"How did everything go? Any solutions?"  I asked.
He explained that Ms. B. e-mailed the teacher to make sure that his I.E.P. would be followed. However, after school he had a “difficult conversation” with the Spanish teacher. “It was really draining to talk to her,” he said. 
Blue and Me in Malibu
Summer, 2015

OMG! I was so proud! He handled things calmly! 
As we drove to Starbucks so that he could work on homework he said, out of nowhere, “I love you mom.” 
What? *Tears  
“What made you say that?" I asked, calmly, trying to act like this was not a huge deal. 
“I just appreciate that you’re always on my side.” 
*More tears. 
“I always will be son.” 

Pow! Take that stupid Spanish teacher! Thanks to your inflexibility and trying to bully my kid. I got an unsolicited, “I love you!” Bam! 

*No teachers were injured or cursed out as a result of this story. In fact, I may not punch her in the face after all. I may just do the kind, Christian thing and say, "Thank you for being difficult. The result was fabulous dahling."  

Wednesday, October 28, 2015

Silver Hair -Don't Care.

A few weeks ago I looked in the mirror and winced. Yikes! Who in the hell is that? I wanted to cry over how old and tired I looked. The gray hair is in the process of doing a massive takeover. I have been vacillating back and forth over the past year whether or not to let it happen. When it was just one little patchy area, I thought it looked kind of cool, like a natural highlight.  However,  as the gray started spreading like a disease, I've had mixed emotions over it. 

According to my history of personal Facebook posts, I have been having this gray hair argument in my head for quite some time. That Facebook "On This Day" feature can be cool, but sometimes a little depressing when you see some pathetic post you made 2 years ago about the same subject that you're currently still whining about. 

I  digress...
I like to consider myself to be somewhat of a natural woman. I no longer put chemicals to straighten my hair. I don’t do the weave thing that a lot of black women do.  Looks great on some of you, but it's too damn hot here in Texas for extra hair. That's why I cut off my long dreads. I wear just enough makeup to accent my facial features and fade a few blemishes, but I don’t overdue it. 

I realize now, the reason I wanted to cry when I looked in the mirror makeup less, exhausted, with more gray hair than I realized, is because I wasn’t happy with myself.  Self confidence had flown out the window. The reflection told the truth of the life that was literally being sucked out of me from years of giving more of myself than I actually could spare. I was allowing myself to be abused and in a way, I was abusing myself. My kindness and love was being taken for weakness. I was giving myself away piece by piece, gray by gray, puffy eyes, disrupted sleep cycles and lost appetite.  It wasn’t a good look -as in not pretty.At.All. It certainly was not  the way I wanted to feel. 

There are people in this world who are takers.  It may not be any fault of their own. Sometimes as parents, we love our children so much that we spoil them and they get used to it especially, when we feel bad for the extreme challenges that they face. There is a saying, "Be careful what you do for your child with autism. They will expect you to do it over and over again." 

Some takers may have a psychological issue or problems with perspective. Some are just black holes that can never be filled up.  I know a few people like that. I'm sure you do too. When a taker knows that  a giver loves them unconditionally, they see no reason to stop asking for more. 
Beauty is a state of mind...
Sooner or later, givers have to learn to stand up for themselves and say, “Sorry dude, but we’re all sold out here. I got nothing for you,”  or better yet, “I love you, but I love myself more. If I don’t take care of myself, I will have nothing to give you or anyone else."

It took me a very long time to stand up and say that to the son whom I love ALMOST as much as I love myself. I have given you a good foundation. I have put a wealth of supports in place for you, but I have to take care of me. I think it will be better for both of us if I love you from a distance for now. 
In other words, it's not you's me.

Today I looked in the mirror and not only was the sparkle back in my eyes, but the gray no longer made me look old and tired, it had turned into sparkling silver highlights. And I was rocking it! 

Friday, October 23, 2015

A New Home

It was his senior year and we all were anxious to get him out of the high school environment. And by we, I mean his father, myself and his high school special education team. High school was crushing his spirit, making him so unhappy and angry.  

He finished all of his credits by December and by that January, he would be starting Transition classes.  We were invited to attend Open House for the Adult Transition program to get an idea of what his new adventure would look like. The Open House took place at the community college campus. This is where he would have class a couple of times per week. I remember being excited about that aspect. My son …on a college campus, before he even graduated from high school. 

As I sat through the presentation, observing the various students and listening to the information being presented, I wondered to myself, “Is this right for him? Is this what he really needs?” 
He’s so intelligent.  I wanted him to take an actual college class or two. 
Was he ready for college classes? Not really. He needed so much support in the high school setting. 
Was he living up to his potential? Hardly, but I didn’t think it was  because he didn’t have the ability to reach further. I thought his lack of achievement was because he had been bogged down in the social quagmire of high school. 

Maybe the thing holding him back was the medication that he was taking. It did not allow his brain to work the way it did when he was in elementary school and even middle school before he started taking it. I had a list of rationalizations for why he wasn’t doing as well as he could. I was making excuses in my mind of why he wasn't able to live up to my dreams for him.  It had to be some outside factor that was out of his control and mine. 

Up until the 8th grade, he had no need for extra help from special education.  Sure, he needed a few accommodations …but nothing like the level of help that was required to get him through high school. 

In hindsight and in reality, did he end up needing the Adult Transition program? Absolutely! 
Did the transition out of the the high school environment make everything better? Absolutely not. It was just the beginning of a whole new set of issues. 

I did not allow my apprehension, fear of change or my dreams of something better for him, stop me from getting what he really needed. We enrolled in the transition program and he made slow but sure progress, rising from the first level of the program to the 2nd level (which provided less support) within a year's time.  

Effective parenting is not always about the dreams we have for our children. We have to do what needs to be done in order to take them to the next level of growth.  This was no different then when he was in the first grade and the school attempted to give him an ADHD diagnosis.  They’re just trying to label my child …put him in a box (I thought).  So, I had my own private testing by a neuropsychologist. The results were pointedly clear. He did indeed have ADHD, and that was only the beginning of the diagnoses he would collect over the years. 

Cut to two (2) years later after he started the Transition program, we go to look at our first group home. I’m at my wits end with his behaviors at home. He is disruptive, extremely argumentative and just generally a real pain in the ass to live with. Just as any 20 year-old, still living with his parents would be ...except like on steroids!  

He was doing so well at work, having held down a job for well over a year. He was making good progress in his transition program. I thought maybe if he got some distance from me, he could start making more progress towards independence and we could all lead a more peaceful life.

As I looked around this group home, I thought to myself, Is this the right situation for him? Is this what he really needs? 
Moving into a group home certainly was not my dream for my first born son.  I had a lot of fears.

  • How he would adjust to the change and the structure of the group home. 
  • How would he be able to get along with roommates? 
  • I was afraid that he was so unstable emotionally,  that he may end up having a complete breakdown. 

There had to be a better choice. 

I didn’t let on to him how I felt about it. After the tour of the home, I put on the optimistic face. I wanted him to make his own decision. I didn't think I was strong enough to make it myself.  He said yes at first. He even said, "Maybe this is God's plan for me."A few days later he became anxious about all of the change he would have to make. He then adamantly said, "NO! I’m not doing it!" (His favorite initial answer to everything we ask.) 

We went on for several more months of bad to worse behavior at home, while I looked into other much more expensive options. His behavior was screaming "something has got to change!" It was almost as if he was subconsciously begging for us to get it over with already and make him move out. 

I was unraveling, unable to think straight half of the time,  unable to eat the other half of the time. I wasn't sleeping well.  I was on edge, filled with anxiety, always waiting for the next bomb to drop. My heart rate stayed high. I was afraid to even check my blood pressure. I was falling apart. 

My husband was starting to lose it too. He became more and more involved in the day to day care of Red's life.  He tried to give me a break and started taking on more.  He began to see exactly what I had been going through for the past few years.  His own blood pressure climbed. We were both just exhausted. Everyone in the house was miserable. 

Finally, something broke. Behaviors reached a peak. The emotional unrest was beginning to effect our family's health and safety. We were forced to make some tough decisions.  

We started off with some major medication changes.  We started it over the summer and thanks to the imprecise nature of the so called science of psychiatry, it seemed like everything that could go wrong, went wrong. We're talking from behavior that was horrific to the stuff nightmares are made of. 

You know that feeling you get as a mother, something is way off? Follow that instinct! And don’t stop pushing until you get some results.  I kept pushing until he was seen by the right set of eyes. By that I mean, I finally met a psychiatrist that I didn't hate.  I just wish there were more like him in the world. 

Our results ended in a big reduction in meds, along with a huge reduction in his weight. He has completely changed his diet and is now hyper focused on exercise. If you had told me a year ago that he would change to a healthy lifestyle, I would have told you were out of your ever loving mind! The change in him that finally began to take place was nothing short of miraculous. His attitude did a complete 180 degree turn and he began to feel much more optimistic than I have ever seen him. 

I'm talking like night and day changes in his ability and willingness to cooperate. So much so, that it seems to good to be true. It's sad to say that I keep waiting for the other shoe to drop, but I'd be lying if I didn't admit this. When you've been living in a war zone that suddenly turns into a resort, you can't help but wonder where the land mines are hiding.  For now, I'm just trying to ride the wave. 

This past week, we started a trial run at a group home. Am I in love with it or even the idea of him being there? No, I am not. I will admit, I am a bit of a snob. I want nothing but the best for my children. Hence they are so freakin spoiled! This is coming from a girl who was raised in government subsidized housing, but our house was spic and span, comfortable and cozy.  We never had a hungry day and we were often the best dressed kids in school. (That is at least until I started buying my own clothes. My mother would say that I dressed like a gypsy. But whatever... I digress.)  

My dream for my son was for him to move out into an apartment or a dormitory. At the very least, a Transitional Living program for adults on the spectrum. I don't know who it is that can afford these astronomically, expensive programs like the ones that I found, but good Lord, they must be very well off to be able to afford costs anywhere from forty to one hundred thousand dollars per year! 

A group home was not a part of the dream, but it is what he needs right now.  We had to do what was best for our family,  even if this isn't what we dreamed of being able to provide for him.  

We are hopeful that this is a springboard for further independence.  I am praying that he will stay motivated to finally get a place of his own or at least with less support someday in the near future. 

We still have a few kinks to work out with the agency that runs the home. I am not all that impressed with the staff so far, but I know my standards are high. I'm sure they aren't used to parents who are involved and knowledgable about what they are supposed to provide. I am not the one to try skimping on.

We have seen him a number of times this week, while we are working out these kinks of transportation and making sure that he has the things that he needs. Another positive, is that the place is very close to us, so we can see him and ensure that his needs are being met.

For now,  it's not the ideal situation but it is so much better than the life we were living just a few weeks ago. I am just trying to enjoy the peace in my home. I can close my door at night and not worry about anyone bursting through it with an immediate need. Blue is  more self-sufficient and he knows when it's time to leave mom alone. I am off duty at 9 p.m. Don't ask me for anything unless you're dying. 

The really good news is that Red is feeling better, physically and mentally. He is optimistic about his future for the first time in years.  It has only been a week so far, but when he comes home to visit, we can actually enjoy his company. 


Now that Red is out of the house ...I'm actually trying to read a real book! I'm reading Elizabeth Gilbert's, "Big Magic." So far I love it! Click here to check it out: 

Thursday, October 8, 2015

A Sustainable Life

Early morning,  before the crack of dawn...
I think I hear "Mom!" being screamed from another room.
Afterward, I lay in bed awake —perturbed that my sleep has been interrupted.
My mind starts rambling... 
How am I going to do this?
We can’t go on like this.
This is not a sustainable life. 

I am by definition a nurturer, a fixer, an easer of pain for those I love especially,  my children.  This is who I have become in the past 20 years and probably, some years before that with my siblings and even my parents. Even though they are all older, I have always been the one that they count on to help facilitate communication.
I keep the family together when they start to lose touch with one another.

With my immediate family, my husband, children and my mother, my role is the same —the facilitator, referee, coordinator and problem solver.

But no one can be everything to everyone. 
This is not a sustainable life.

When it comes to my children, intellectually, I know that I am operating out of fear, anxiety and quite frankly, intimidation. 
I know that what I’m doing, is trying to cushion Red's fall. 
I’m trying to silence the explosion.   
The bough is hanging by a thin thread. 
It’s about to break.
This is not a sustainable life.

My husband and I are stressed beyond recognition.
He walked into his doctor's office the other day. She said, "What the hell happened to you?"
We have the same doctor.
I've probably been subconsciously avoiding her for the past few months because I know she will say the same thing to me.  
All of this haunts me. 
This is not a sustainable life.

I've said this before. I know, I’m like the mother bird who wants to push my little fledgling out of the nest. 
“You can fly! I know you can do it!” 
But as soon as he starts plummeting towards the earth, I fly in to scoop him up, never giving him the chance to figure it out for himself.
This is not a sustainable life.

He’s an adult. 
He’s twice my size. 
I literally can not cushion his fall.
He will smash me! 
In an attempt to save him, I will kill myself!
I will disappear. 
As it is, there are only traces of my former self.  
I have allowed one of my children to absorb about sixty to seventy percent of my energy. 
That leaves about thirty to forty percent for everything and everyone else, including myself.  
This is not a sustainable life.

I can not breathe.  
I can not exhale. 
Most days I can feel the vibration of my heart beating, like a bass drum. 
I attempt deep breaths, trying to slow my heart rate. The fix is only momentary.
I’m living in PTSD mode. 
Always preparing for the next explosion.
This is not a sustainable life.

I would like to give photo credit
however, this was sent to me by a friend.
Arthur Unknown
I have to think about the rest of my family. 
I must think of our health and safety.
I keep things moving along mostly on automatic pilot. 
I try to keep my sense of humor.
I attempt to find some semblance of enjoyment in my life.
I color in one of my adult coloring books while feeling a mixture of guilt and self-loathing because I'm not writing.
The truth is most of the time, I can't string two thoughts together, much less a full story.
This is not a sustainable life.
Colored by me!
To Order Your own click the ad below

In quiet moments, the enormity of it all overwhelms me. 
It’s crushing me.
I’m drowning.
I remind myself that I've done everything I know how to do.
I have pulled out every big gun in my arsenal.
I’ve tried.
I’m not a doctor, a pharmacist or a therapist. 
I have played all of these roles in real life, for a long time.
This is not a sustainable life.

He fights everything and everyone who tries to help him.
I realize that his behaviors are mostly based in fear, anxiety and his autistic, different way of thinking. 
That doesn’t change what it’s doing to the rest of us, physically and emotionally.
This is not a sustainable life. 

In a phone call the other day I told him, “It's time for you to change your own life. I can not make it happen for you anymore than I could make you lose weight.
(Recently, he made that decision for himself and he’s lost a considerable amount.)   
I told him, “When you finally decided to do it, YOU made it happen. I have faith that you will be able to do that with the rest of your life.” 

Every experience in life changes who you are. 
I’m going to have to believe that in the end,  all of us will be changed for the better.
All of us will be stronger. 
In the end this will be a long, incredibly painful, success story, with a few cautionary tales weaved in between. 
It is not a story that I can contrive or create like the novelist I once wanted to be. 
This story has to play itself out, one long, excruciating chapter at a time. 
I have to let go and let God write this script.
All this time, I’ve been thinking God needed my help.
He doesn’t.
He’s in charge.
Until this story reaches it's climax, God will sustain me.

Click here to order your own adult coloring book. Here are two of my favorites:

Thursday, September 3, 2015


Over the past few weeks we have been dealing with some medication changes.  Emotions have been running high. Anger has been vast. We have experienced some ugly breakdowns  (parents) and witnessed meltdowns (19 year-old ). His body's chemistry has been going through some serious changes. I am so pissed off about that, I could choke a Psychiatrist or two right about now (but that's another post).  

So he may not be able to completely control his emotional and physical reactions to medications. The question that has been lingering in my mind is, What can he control? What behaviors are a result of his medication being out of whack? What is the result of autism, things that may never change? What is the result of just plain old assholism

What is assholism you may ask? I’m going to get that word patented, by the way. Assholism is the choice to act like an asshole. It can be an addiction of sorts…where you just gravitate towards those assholish behaviors without any forethought. The individual could be addicted to the pay off they receive by choosing such behaviors. As in -I know that will really piss that person off. I bet this will make this person scream or cry. That will be funny.

It could just be, I’m feeling bad …and it will make me feel better if someone else is feeling as miserable as I am.  Perhaps it’s just, I’m a hormonal teenager and I think I know everything! Let me show you that you don’t!

Some may draw the conclusion that I’m trying to compare autism to assholism. That is not my intention. Assholism can happen to anyone. For instance, my 86 year-old father can act like bit of an asshole especially, to people those who attempt to care for him.  It’s one thing to be a cranky old man. It’s another thing, to curse people out and call them insulting names that degrade or defile them.  That’s just uneccessary.  

Side story: This man, my father, (his friends call him Hollywood) recently escaped from his 3rd locked skilled nursing facility, where he was supposed to be getting therapy so that he can walk after taking a fall. Note: He can not walk unassisted! 

He didn’t like it there. He felt he wasn’t getting the care he deserved or wanted. He had cursed out several nurses and therapists, being a very uncooperative patient. Quite frankly, I believe that he just doesn’t want to die in one of those facilities.  He wants his freedom and wants to go out on his own terms. 

So, he had someone get him half-way dressed and help him get into a wheelchair. He parked the wheelchair by the front doors and pretended to be asleep until an ambulance showed up and the doors opened. He rolled himself out, down the street and around the corner and caught the train and then a bus, to make it back home to his apartment, where he still -can not walk!   I have to say this about him, he may act out.  At the same time, he’s kind of a bad-ass to make it out of a locked facility and all the way across town without being able to walk.

I'm thinking of making a movie short about his life on the run as a senior citizen in a wheelchair.  (Some people make think it's wrong to say your senior citizen, father with dementia is acting like an asshole. To those people -I'm sorry.) Actually, not really. 

We all know at least one person who acts like an asshole.  Some of our lives are full of them. Assholism can happen to anyone. It doesn’t discriminate.  It happens to most teenagers at some point during adolescence. It is heightened by puberty between the ages of 12-14.  Just because our kids are on the autism spectrum, does not mean they are immune to it. In fact, that may just mean that it is intensified times a thousand.

Last week, we witnessed what outwardly appeared to be a pretty horrible, autistic meltdown.  Our family room was pretty much turned upside down.  Our son was livid, primarily because he wanted something, and could not have it in the exact moment he wanted it. 

Granted, the fuse that lit his anger was no doubt shorter than usual due to his body chemistry being off.  But was it a meltdown or a horrible tantrum to get us to do what he wanted us to do? He seemed pretty out of control in the midst of it, screaming to the top of his lungs and throwing things.

However, in the aftermath -we noted that not one single item in his bedroom had been touched. Everything remained exactly where it was pre-meltdown.  It was only our things that had been displaced. We also noted how quickly he pulled it together so he could make it to work on time. 

That’s one of those things that makes you go, ...Hmmm. How much control does he actually have? 

I offer to cook you a meal and you give me attitude, "I don't want that!" When last week when I was out of town,  you ate the very same thing without complaint. -assholism. Make your own dinner. If you can control your attitude with your dad but not with me, that sounds like a choice. 

When you walk around like everyone owes you something and yet you don't treat them respect -assholism. It's a choice that will not win you any favors from me. 

The other day I posted this meme on Facebook. 

I made this one night as I sat in my room thinking, medication has nothing to do with assholism.  It's a bad habit.  You have to recognize it as such. Motivation to break a bad habit has to be internal. The individual has to be willing make a better choices.  Otherwise, you may find yourself up a creek without a paddle or a person to assist you down the creek.  

Feel free to share this post with the assholes in your life. Together, we can change 
the world.

Hello friends …

It’s been a while since I’ve been able to complete a blog post. When traumatic things are happening in my life my feelings are to raw to express without saying more than I probably should say publicly. I’ve always been a pretty open book on this blog, but as one of my boys is seriously staring some heavy issues in the face, I have mixed emotion about sharing his journey. Unfortunately, my journey is undeniably linked to his right now. As much as I would love for us to go our own separate ways. Well, that’s a whole other story. 

Anyways, I hope you enjoyed this bit of humor today.  Remember, if it's not offensive to someone, it probably not funny. 

Thanks for following! 

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.