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Friday, May 20, 2016

The Art of Conversation

Simple conversations can be agonizing in my house. In fact, I am becoming less and less of a fan of talking. I would rather write or just be -alone, in silence or listening to the birds sing, or the sound of the waves crashing on a beach, where I am alone. Did I say, alone?

Lately, trying to have a conversation with my 17-year-old feels like a trip to the gynecologist. You just don't want to go there.

Whoever said "third time is a charm" is a mother sucking liar. I am going through the age of seventeen for the third time raising my boys, and it is anything but -charming.  There are layers and layers of suckiness, emotions, and anxiety that comes from all of the stressors for Blue right now. The worst is how much he thinks he doesn't need his parents anymore. In fact, having us around is a major inconvenience. The only problem with this is IT's OUR HOUSE!

I realize that seventeen is not the only sucky age, especially for those on the autism spectrum. This is not my first time at the rodeo. I've been through all of the ages with my boys, including my atypical son who is now 27 or is he 28? I can't keep up.  He was not much easier as know-it-all teen.  He is just starting to get the fact that we are and always have been, one hundred percent in his corner.  He is becoming a much more responsible adult. In fact, I must congratulate him for finally earning his degree in Computer Science a few weeks ago.  I didn't believe it until I saw the degree in writing!

So I get it. It's only natural to go through this right of passage. Seventeen was when I told my mom that I would longer go along with her religion of choice for us. I would not answer to a congregation of people and the elders about how I was going to live my life.  It's almost like a teen's job to want to be nothing like their parents during this time in their lives. Of course they resent the control parents have over them.

By seventeen, you want to break away and be your own person -an individual, with thoughts and feelings, that are separate from your family. You don't want guidance or opinions from your parents. After all, we're completely clueless, right?

As much as they can't stand us (parents) being around, they can't completely breakaway because they still need a roof over their heads, and rides, and money. Subsequently, they resent our authority.
They want to be adults. They think they know more than we parents could ever know. After all, they didn't even teach us the kind of things that they're learning now in school, way back in the day -you know in ancient times.

There is an easy solution to not being around us.  GET OUT! And I left out the expletive. 

I get it; you're practically an adult, and yet there is fear all of the responsibility that comes along adulthood. There is a ton of social pressure from peers. It may be the first time you're experiencing love, and no one in the history of the world has felt the kind of love that you're feeling right now the 11th grade.

Do I dare even mention those sexual desires and all of the complications that are helluva confusing? Everyone is talking about sex at school, all.the.time. You think everyone has done it except you. ( Except you know most of them are lying, right?)

Today's kids have easy access to media and anything they ever wanted to know about anything via the internet. Only, they don't realize there are nuances to relationships and sex that media can NEVER teach.

Now, let's add Aspergers to the mix, which produces a whole other series of social deficits that are too intricate and complicated to wrap your head around. They have this unique way of seeing the world and sometimes it's hard to figure out why everyone else doesn't see things the exact way they do. People just don't get it and parents, the people who should get it, are the worst offenders.

There is a ton of pressure with school. Grades are beginning to get serious as they can affect what college you're accepted. They have to start thinking about college; possibly going away. There are AP exams, SAT's and college applications. The list of pressures is infinite.

As a parent of a seventeen-year-old, I have to face once again, that I am no longer the mom; the teacher of lessons; the preventer of falling over a cliff. I have now become The Consulting Parent. I wrote about this two years ago, so you think by now I would get it by now.

So now more than ever, when we try to help our son or teach him something, he takes it as a personal affront; like what we are telling him is that he is all wrong, and we are right.  Or as he puts it, "you're treating me like I'm stupid." We are just trying to help him. We would like to give him the benefit of our life experience. We are parenting. We would like to spare him some grief, maybe prevent him from making some of the mistakes that we made. Unfortunately, it feels like the teaching window of time for this kid has expired. Any guiding that we do for now is met with disdain and anger.

In recent weeks, I've been told in every which way but loose, that I have no idea what I'm doing anymore.  He is different than his brothers, and we're treating him like he doesn't know anything. He doesn't need our help.  And then in the next breath I am told,"You should know what I need by now! You should know what I'm thinking! Everyone understands me better than you!" He doesn't need our advice and our teaching moments! "I just need for you to listen to me! I need your understanding!"

I am eternally grateful for the adult mentors and friends in his life, who he believes do understand him. He can talk to them so much easier than me or his father. I am especially thankful for the special friend who he believes has given him a sense of humor and sarcasm. I mean, there's no way he got that from me. 

I ran into some old friends a few weeks ago. This family has a daughter Blue's age. She and Blue were friends in Elementary school. In fact, she would sometimes be the only girl at his birthday parties. I was kind of staring at them from across the room in the restaurant, mesmerized by how beautiful and poised this young lady is now. When they finished eating, her mom popped over to our table to say hello. She told me that her gorgeous daughter just told her that apparently, she "knows nothing about anything anymore." She said this with a forced smile on her face, which I read as she was about ready to strangle her lovely child.

In recent weeks, simple conversations turn into anger-filled rages so fast it gives me whiplash. Anxiety is a big part of it. However, I leave these conversations with hurt feelings and sometimes even tears. That brutal honesty that those with Aspergers have can sometimes leave you with bruises.

When a person with anxiety, stress, and anger is feeling out of control, they can sometimes project their emotions to whoever happens to be in the line of fire. Especially, a mother who they know loves them unconditionally. They can make us feel like we are the problem. I've been there done that with Red and I still feel the sting of PTSD from years of it. I feel myself tensing up, stomach turning in knots when I think that Blue is getting ready to get started.

When you're being attacked by words and barraged with yelling, sometimes you start to believe that you actually are indeed the one with the problem or at least a contributor. The truth is that I am usually just trying to survive with a little bit of sanity intact. As mothers, we are usually trying to help however we can, even when we can't.

I know that I'm not perfect and I often find myself engaging in an argument that I had no intention of being a part of, but I can easily get sucked in.   So, I did some research and even talked to some adults that I know with Aspergers to help me process what I have been experiencing with Blue and our conversations. I wanted to see what if anything, I could do differently.

As a result of my research and examining some of our recent conversations, I came up with  some guidelines and strategies to help me communicate with my Aspie:
  • Ask in the beginning of the conversation, "What would you like from me?  Do you want me to just listen or do you want my advice? More than likely they don't want your advice. Ask, do you even want a response from me? 
  • If what he wants to just have a monolog (to information dump, on a topic of interest, or he just wants me to listen) where he is the only one talking  -I will give a time limit in the beginning. The amount of time depends on how close I think I am to snapping.  
  • When monolog turns into a personal attack where he is blaming me, shaming or making me feel bad -I have the right to *walk away or ask him to go take a *walk until he can calm down and speak to me with basic human decency.
*Walking brings down cortisol levels almost instantly. You will feel better.
  • Criteria for ending the conversation 
-Do I feel bullied?
-How would I feel if this were a friend talking to me like this?
-Do I feel uncomfortable?
-Would I accept this coming from anyone else?
-Would one of his friends or colleagues accept his talking to them in this manner? -If the answer is no. I am not doing him any favors by allowing him to speak that way to me. Lord knows, I'm not doing myself any favors.
  • I realize that sometimes, I feel compelled to teach him something. Even though he's made it pointed clear that he does not want to be "taught" by us anymore. I often find myself caught up in this trap especially...
-when he starts making assertions that I know are not factual as if they are indeed fact. I
-when he starts using words or language that I consider offensive or unacceptable. I want to stop him right then and there and correct him.
-This never works when he is already on a roll but as his mother, I get caught up in the fact that he will go out into the world and people will think he was raised by a pack of wolves.
  • What may work better is if I could just wait and listen when he is talking. Perhaps, I can take notes while I continue listening and give him feedback later when he's in a more calm, accepting  mood. As if that ever happens. This will give me something to do with that nervous energy with which may otherwise lead me to whack him in the mouth or wring his neck.
  • I have to remind myself that I am probably more in control than he is; keyword -probably and I should try to be patient. I'm trying so hard, I hope it doesn't kill me. 
I will be attempting to implement these strategies in the coming weeks. Lord knows, summer is almost here, which means a lot more togetherness. I hope we will both make it out alive.

Monday, May 2, 2016

Dear Prince

Sitting alone in my room on that Thursday morning, April 21st, I read the news...
How can people be so cruel to perpetuate such a rumor? 
That's ridiculous! 
Nope. I don't believe it. Just No.
I am a hopeless optimist. 
I never want to believe the worst case scenario. 
I don't jump onto every bandwagon on social media, especially when it's something negative.  
I don't believe it until you prove it. 

Moments later on CNN there is confirmation:
The fatality at Paisley Park was indeed the artist who played the soundtrack of my youth. 
At the age of fifty-seven-
Just six years older than me-
Prince is gone.
I sit there on the couch in shock, 
trying to process what feels like bad dream.  
I can not move.
I can not carry on with my day. 
I am numb. 

It's not the first time that I've been alone in my room with Prince, but this time eerily different.
Photo lifted from ABC
That time when you were a teenage girl - sneaking around to do everything that your mother didn't want you to do. She didn't approve of much. As a single mother, she was trying to the best of her ability to keep you on the right path, close to God and all of that.

Your loving mother decided that your religion was Jehovah's Witness when you were in the second grade, not long after your father left, and before you were old enough to have any choice in the matter.  You think that part of her reason was that she needed the support system of the "Witnesses" being a newly single mother in L.A. without any family. You did meet friends who became like family.  They were the nicest people ever.

It was cool until you realized that you had to go to those freaking meetings three times a week and field service on Saturdays. You would miss all of your favorite t.v. shows on Tuesday and Thursday nights. There were no VCRs at the time.

On Saturday mornings, when you wanted to sleep in and watch cartoons, you had to get up to knock on people's doors to pass out "Watchtower" and "Awake" magazines for a ten cent donation.  Excuse me I'm knocking on your door, disturbing your peace to bring you the word of God for the bargain price of ten cents. It was torture! You hated it, but you were a good girl and did as you were told.

When you were hitting adolescence and started having those feelings about boys, like an average teenage girl; only you weren't allowed to date. It was against the rules. You were drilled with, dating leads to making out, heavy petting and pre-marital sex. You weren't allowed to do a lot of things; no birthday celebrations; no Halloween; no freakin Christmas.  However, your strong will would find a way to do whatever it was that you wanted to do.

Somehow you listened to all of that Prince music and learned the words by heart, even if you didn't completely understand what they meant. Who cares really? The music was a funky, hot combination of soul, punk, and rock, with a side order of naughtiness.

That time when the album, "Dirty Mind" came out. It was unlike anything you had ever heard before. It was R & B with a splash of New Wave. You were seriously into New Wave at the time; the Go-Go's, The Cars, Soft Cell, Devo, the B-52's.  It was your first year of high school. You finally had the first boyfriend that you were NOT allowed to have. The "Witnesses" were right. It did lead to a little bit of making out, but that's about as far as you allowed it to go.

All of the boys in high school were talking about that song, "Head." You thought the idea of "Head" was OMG gross! After all, you were only 15 and still a virgin. The fact that you were grossed out by the sexual act did not stop you from singing every single lyric and shaking your ass to every single beat. I mean could you not? From "When you were Mine" to "Party Up" there was no reprieve. You simply had to dance.

I don't know how you managed to listen to the entire album over and over again, especially in your mother's house, but there you were alone in your room, with Prince. 

You learned every song, in order of play and there was no other way to listen to it. You listened to the entire album over and over again, loving every song more than the last. You particularly loved the transition between "Head" and "Sister;" how it almost seemed like a continuation of the same song, but it was indeed, another song altogether. It would be years before you realized the meaning behind "Sister."

OMG and then there was that time when Purple Rain the movie came out! It was 1984. By that time, you were seventeen, almost eighteen. You pretty much told your mother you were done with the whole, judgmental, controlling, Jehovah's Witness religion. You were done with sneaking around to do all of the things you wanted to do. You were just being honest with her.  She was a bit shocked at first. She gave you that look like, I don't know who you think you are, but she ultimately accepted your truth.

You had friends who were boys and one that one boy who was more than a friend.  You were knee deep in rebellion and -I'm gonna do whatever the hell I want to do. So of course, you went to see "Purple Rain" the movie more than once. In time, you knew all of the lines and of course all of the songs. You wanted to be Vanity, the girl who got the sexy boy. Of course, you weren't even close to being the sexiness that oozed from every pore of Vanity's body, while Prince was drinking it up.

Then there was that time when you got to see your boy live at the "Purple Rain" concert!  You had a special friend; he was like a brother to you, only nicer.  He took you to that concert at the Long Beach Arena. It was like living a dream, getting to see Prince dance and sing live on stage. You were taken aback by how loud everything was. There was no adjusting the volume to Prince's screams. It was an experience you would never forget. That dude who was like your brother would remain a part of your life thirty-something years later even though you would come to live miles apart.

Let's not forget all of those times when you were hitting house parties and the clubs in L.A., dancing to songs like "Erotic City," "Housequake," "D.M.S.R."  "Sexy MF."  There were so many songs, so many parties, and so many clubs where you danced into the night.  Your favorite spots? The Red Onion on Wilshire Boulevared and the Bitten Apple, further west on Wilshire. There was always somebody there who knew your name, and if they didn't know your name when you got there, they would by the time you left.

There were many times and many people that each of those Prince songs would always remind you of, even all these years later.  Until this day, when you hear "Adore" and "The Most Beautiful Girl in the World," it brings back the kind of memories that a married woman is not supposed to talk about.

It's afternoon now. I've been dancing all day to all of the songs. When I'm dancing somehow, I'm not sad. I am celebrating his life. I am celebrating my life in all of its different stages. Each Prince song carries with it a memory of someone --of happy, carefree times before I grew up and had to start taking life seriously. On this day, when my sweet Prince said his final goodbye, I took a much-needed break from my reality.

Hours go by. I can't shake it off. I can not let it go.  I can't quite figure out why this is hitting me so hard. I'm like a love sick teenager, except I'm a 51 year-old-woman, a mother, a wife. 

My son comes home from school and into my room. He begins talking about his day; politics and everything that's wrong in the world. He jars me back to reality. Hey, wake up girl! You have a son with autism who loves to hear himself talk. It's his way of processing his thoughts. He has no idea that you are currently living in another space and time. 

After a few minutes, I stop him because he wants a response to the question, "Who will you vote for in the upcoming election? I mean, how can you trust Hillary?"

I start my automated response, "How can we trust anyone in politics? Obama is probably the last President I will ever trust, and he wasn't perfect. Close, but not perfect."

That was not good enough. He starts going on about the candidates on the other side. I could not give less of a flying f*#% at the moment.  Suddenly, I interrupt, "I'm sorry. I can't process anything that you're saying right now. You know who Prince is, right? Well, he died today, and I'm having kind of a hard time with it."

He apologizes, but then he keeps talking. I turn the music up and start cleaning out my closet. After all, I am not entitled to completely lose a day of productivity. I am an adult! 

My son says "Are you trying to tell me that you want me to leave your room?" I think to myself, Hallelujah! Great reading my social cues! Yes. Would you please leave me in my Prince world?

Days go by. I am still sad. It feels like I've lost a close, friend unexpectedly. I can't quite grasp why I'm so sad and lack of ability to just move on with life.

I listen to his music every chance I get. I'm furiously looking up lyrics and reading articles about him, trying to find the deeper meaning behind his body of work.

I'm stunned when I start reading an article and find out that "Sister" is actually about incest. How did I not know that when I was 15? Oh yeah.  I was pretty clueless. I thought it was just about his sister who was "loose" and liked to sleep around. Duh! 

I start mapping through his life -looking at every video I can find; reading everything I can about him. I read about him becoming a Jehovah's Witness, which I always thought was strange. As I examine his life, I find so much irony and paradox in this choice. How is it possible, that the man who was a key part of my rebellious youth, actually came to believe and follow the very controlling, extremely conservative religion that I rebelled from?

I wonder, How could they have accepted his travel around the world, hanging out with other celebrities and even becoming heavily involved in social causes? Maybe because he was Prince and probably giving them a crapload of money in donations, they let him do whatever he wanted to do.

"Prince often vanished from the congregation for long periods, apparently while he was traveling, and his fellow congregants didn't seem to begrudge him, acknowledging the effect his musical gifts had on the broader world. They also said he apparently visited other Kingdom Halls when he was on the road." Los Angeles Times,  April 24, 2016

My memory of Jehovah's witnesses was that they attempted to restrict who their members were allowed to associate with. It's one of the reasons I left. I had friends from all walks of life, and I no longer wanted to have to answer to The Elders about who my friends were and what I was or was not doing with them. There was a judgmental overtone about "people in the world -with their worldly ways" that I hated. Prince would have been one of them at the time.

In "The Truth" (which is what witnesses call their belief system) they only wanted you to associate with others who shared the same belief system.  I found it to be cultish. They wanted you all in. So much so, that I wanted nothing more than all out.

Perhaps the paradox of Prince's decision to become a Jehovah's witness is not for those of us outisde of his world to understand. His sprirituality, his relationship with God is really none of our business. 

Whatever the case may be, the world was better off because of Prince and his rebellious days making his special genre of music. He made us stop whatever we were doing and dance. He opened our eyes to acceptance and difference, of being whoever you choose to be, without asking the world for permission. 

I felt compelled to write this story. At first, it wasn't coming out right. I wasn't really making any sense. It wasn't cohesive. I went through all of the typical artist/writer feelings. Who cares what you think or feel. No one will read this. Your blog is not about music or celebrity. As I kept reading about Prince, how hard he worked and he NEVER gave up on his art. He created every single day, not thinking about the outcome or who would approve of his work. That was his final gift to me. 

Thank you, sweet Prince.  
You  live in my heart always. 
Thank you for the inspiration. 
Thank you for the music. 
I love you. 

Another Artist...

Wednesday, April 20, 2016

Adult Transition for Mom

The process of raising my boys feels like I’ve already done the work of a lifetime. Red is now twenty-years-old and Blue is seventeen.  I think maybe I should just retire now. I deserve it!  (I  fantasize about this ...a lot.) The reality is  the job of raising my children is changing, but it’s not over. It will NEVER be completely over, no matter how much I wish...

(Excuse me for a moment while I cry into my glass of wine.)

Okay,  I'm back. 

We are all at a point in our lives where we are going through a transition. 

Red is out of the house and though he has made tremendous progress, (in case you missed it, read about it here in the popular, "I Can Not Die" post) I am still his nervous habit. When he gets anxious (which is often) he calls me. This can mean way too many phone calls to count on any given day. Even deflecting, turning the cell on silent and not answering each and every call, is still an energy drain. He's like a robocaller,  dialing one number to the next between the house, my cell, his dad’s phone, his brother's phone just goes on and on and on.
I think he wants to make sure he is ALWAYS on my mind. Can we say -attention seeking? 

As he transitions into becoming a responsible adult, I try to be less of a presence in his life. I  try to work more behind the scenes. I don’t attend every meeting and appointment. It seems to help him speak up more when I am not there to be an extension of his own brain.  He may not be a full-time job for me anymore, but he is still a piece of work!

Blue will be a senior next year and totally opposite of Red, he is already working on becoming independent. He wants me as far into the background of his life as possible! I think I may actually talk to him less than his older brother, even though we live in the same house. He entertains himself.  More often lately, he calls his friends for his lengthy discussions about how the world should work, according to Blue. Score for me! 

He’s doing a lot of drawing lately as a calming/coping mechanism.  At the same time, he is slowing down on the video gaming, which usually makes him end up feeling more anxious. He keeps his own schedule, makes his own plans, and even sets up his own appointments. He is driving his life forward academically and socially, and even politically. (He just participated in his first political protest with some kids from his high school). He now belongs to two clubs that meet after school; one that he created, and now a Computer Science Club.  I am just the chauffeur and giver of money. 

So as the boys transition, I think it’s also time for me grow up too. There is a pull towards something more than making motherhood the center of my universe. I have the crazy mind of an artist. I feel a certain degree of gravity pulling me towards more creativity in my life. I have scratched this itch with writing this blog during those busiest years of raising my teenagers. I reaped the reward of expounding my creative energy while also having my own therapeutic outlet. Now, there are a few other creative projects that I would like to explore. 

The role of mother, wife, my mother’s daughter and caregiver, continue to command a great deal of my energy. However, with Red out of the house, things are a little more quiet for longer periods of time (in-between the phone calls, that is.)

The peace is allowing my inner voice to speak to me more than ever.  I'm starting to think of myself more as an individual with dreams, hopes, ambitions, likes, and dislikes. 

I am spending more time inside my head (which sometimes can be dangerous). I have to admit, I spend  a lot of this time beating myself up with negative self-talk about what I am not doing or achieving, instead of celebrating what I have accomplished. I realize there are still countless things-to-do, but I spend a lot of time juggling them all around in my mind until I feel overwhelmed.  Ultimately, I end up achieving a microscopic amount of my full potential.

Eventually, I find myself falling back into the habit of doing all of the things for all of the people;  running them around to their appointments instead of tackling the little projects I want to complete for myself. I’ve been doing that for so many years. It’s not easy to lose the habit.

I have caught myself a couple of times being asked to rearrange my appointments or plans, in order to take care of my family's appointments. Uh, uh. It's not happening! I'm learning to take care of myself. If I fall apart, they're all screwed. 

One of the thoughts I beat myself up with is how much time I waste in a day.  My therapist and my closest girlfriends remind me, that I deserve some downtime after being completely stressed for so long. However, the quiet self-reflection makes me I feel like I’m spending a little too much time standing around like a deer in the headlights. Um…which way should I go? Instead of just moving …forward. 

In quiet moments, I think about all of the parts of myself that I have let go of in the last few years while I was swimming in a pool of crazy with Red. His last two years in the house were hellacious -with one disruption and eruption after the next. If he wasn’t fighting with his brother, he was fighting with my mother. If he wasn’t fighting with my mother, I was diffusing things between him and his father. It was a constant expulsion of energy!

Recently, a post came up in my Facebook history that I wrote a year ago, "Excuse Me While I Go Left" .  The following day I wrote  "The Script."  After reading both of these I thought, how did I NOTcompletely lose my mind? How did he make it to the age of 20 without either one of us being arrested? 
As the dust has started to settle, and the fire after the war comes to a smolder, I reflect...

You made it through one of the most difficult battles of your life. Now, what do YOU want to do?

Better yet, you spent years erasing the essence of yourself. What are the things you DO NOT WANT to do anymore?  

I put together this list -the new philosophy for my life with the underlying mantra, “Take care of Me.” 

I will not say the automatic yes. 
I will give myself time to think about it, and say NO when that is the right answer. 
I do not want to consistently put anyone else’s needs and wants ahead of my own.
I will pay attention to my thoughts and follow my instincts.
I will make myself my priority.
I will listen to my body when it says, “I need rest, exercise or to see a doctor.” 
I will not waste time with people, just for the sake of being around people.
There must be an emotional, spiritual connection. If there is no connection, I need to move on. 
I don’t want to waste time …period. 
I want to live my life with intention and purpose. 
As a part of that intention, I will relax without guilt. 
I will enjoy the sound of the birds singing outside of my window.
I will sit and just enjoy the breeze and the feel of sun on my skin.
I will stop and take a selfie of my silver hair and share it whenever I want to! I earned every last one of them. 
I will smell the roses. 
I will just be …as often as I possibly can. 
I want to see the ocean -often. 
I want to create memorable experiences. 
I want to be in service to other parents who are walking with me and behind me on this journey of raising special children. 
I will take the opportunity to make life better for someone else, but not at the expense of my own life.
I want to live each day creatively. 
I will savor every quiet moment. 
I will make my home a sanctuary. 

This philosophy is a work in progress, as I am. I give myself credit for doing a better job of taking care of myself.
I now go to *yoga and therapy regularly.
*Lies. Haven't been to yoga in two weeks! I'm going back! I swear! 
I bought and am actively using a Passion Planner to keep myself focused on my personal/creative desires, as well as the work of taking care of my family.
I continue to work on showing myself the same kind of love and compassion that I have shown my children for all of these years.
I am making myself a promise to work hard at following my own advice. I hope that you will join me.

Wednesday, March 9, 2016

I Can Not Die

A couple of months ago, in a quiet moment between emergency phone calls (which are not really emergencies) from Red, my 20-year-old son, I thought to myself, "I definitely can not die."

How will these boys survive?

There are so many subtle nuances of life they will never be able to figure out on their own.
No one else will have the time or the patience o deal with them.

What happens when they have to deal with a government agency or a health provider who simply is not doing their job? Believe it or not, it happens. 

Will they be able to advocate for themselves?

I spend so much time thinking outside of the box about how to solve problems for these young men of mine.

I am in the background of their lives, flipping tables over to make sure that they get what they need.

Over the years,  I have spent a lot of energy just making sure that providers,  teachers, and administrators are doing their jobs. Even now that Red is an adult, I'm still working with the group home agency, the Department of Rehabilitative Services, Medicaid, Social Security, our local mental health authority, and even the school district Adult Transition program.

The thing is with these agencies and programs is, if you don't ask, you don't receive.  If you're not aware of what's available, you get the bare minimum. If you don't know your rights, you can get screwed.

In the care, feeding and raising of these children, there are times when things are going so horribly wrong, I wonder if they will ever go right.

There are still times when all I can do is laugh, cry or have a drink or three.

There are times when I doubt myself as a parent ...when I feel like I'm doing it all wrong.

I have put so much effort into raising them and advocating for them to get them the supports that they need to be successful, or to at least survive.
Maybe I've done too much.
Maybe I haven't done enough.
I'm too soft.
They are running over me.
They are draining the fricken life out of me!
I hate this job.
I quit.

The truth is, the success or failure of your children is not all about how hard you tried as a parent.
We are a part of their success.
We are not their success or failure in total.
Ultimately, motivation for what they will do with their lives must come from within.
A parent can only plant the seeds, water the plant and in my case, kick a few asses.

We can't walk in their shoes for them.
We can not be inside their heads for every choice that they make.
We can't always be there to whisper, or scream words of caution when they are about to make a stupid decision.
Sometimes, we have to sit by and watch them run in front of the moving train.
It's the hardest thing ever for a parent to do.
We have to let them fall and cheer them on as they get back up.

When mental illness and autism are a part of the picture of your child's life, there are even more facets that we have no control over.

Medication is one big toss up.  It will either help tremendously or send them further over the edge. I've seen both. Have I told you how much I hate psychotropic medications, especially during puberty when their bodies are growing and changing?  It's madness! But we are desperate to help them, by whatever means necessary.

Therapy often feels like a gigantic waste of time, energy, and money. Again, we're desperate. We will give anything and everything for the off chance that something will work. Some days, therapy feels like a big scam that we buy into to give ourselves hope that behavior and communication will get better.  (One day, I will finish my post about ABA therapy, and how many headaches it gave me. I wanted to strangle our therapist.)

With each new therapy, new teacher, counselor, and mentor, we pray that our children will put two and two together and make four.
It could happen.
What else can we do other than put our feet on the ground every day and keep moving forward, trying something, anything, everything, to help them make even incremental progress?

Well today my friends, I see progress.

Red has worked for the YMCA for the past two years after high school.
When he was in the vocational program in high school, he could not get hired to save his own life! There were days, where he was just too far off on the deep end of anger and depression. He spent a great deal of his time engaging in arguments and conflict with job coaches instead of allowing them to help him.

Because of medication and a horrible diet, he had become excessively overweight.  This summer, he was so out of sorts. I  determined that most of the medications could not possibly be helping him. Two of them were definitely a part of the weight gain issue. We made some changes which at first, made things worse.  We went back to the drawing board, this time with another doctor. It was a painful process, but it was well worth it in the end. We were able to get the number of medications down to just two that seem to be helping him.

After a prompt from his doctor and a combination of being on the right medications, he made some changes in his diet.  At first, we kind of forced him to start exercising.  Basically, it was like, we're not picking you up from the YMCA until you swim at least 10 laps.

When he saw himself starting to drop weight, he decided to completely change his diet and start working out five days a week. He found an online program to follow, which taught him about advance meal prep, and high-intensity work outs to help him get fit. He became obsessed with it. These changes  have led to over 100 pounds of weight loss!

Recently, when the YMCA was about to lay him off because they couldn't give him enough hours, with my prompt and his job coaches assistance, he found another job before the layoff could happen. He is now working at another major gym.

Several months ago, we had to have him move out of our home and into a group home. It was abundantly clear that neither of us could survive much longer living under the same roof. Aside from his behavior in our house, deep inside I knew that he needed a nudge, or rather a swift kick, to help him get the motivation to move forward into adulthood.  I hate to admit it, but the closer he was to his mommy, he saw absolutely no reason to grow up.

Now, the boy who in high school,  could almost NEVER get there on time, is now getting himself to work for a shift that begins at six a.m.! The night before, he arranges his taxi ride to pick him up at 5:15 a.m.

He prepares himself for work before bed.  He arranges his bag with his clothes for working out after work, showering and changing so that he can go on to his 2nd job! Yes. He is volunteering at a local middle school helping special needs kids with Science and Physical Education. This is the middle school where he was once in the self-contained behavior program.

Speaking of showers ...his transition teacher has been able to get him on a shower and laundry schedule so that he will always be fresh and smelling good when he walks into one of his jobs! I tried for years to do this! He would never listen to me.

When Red finished high school, he was sure that he could NEVER be successful in any college classes. "I hate academics!" he would say. In high school, he required a lot of one on one support to stay on track.  However, one of the things I had him do while in High school, was work with other special needs students who had more challenges than he does.  I figure the best way to stop thinking and worrying about yourself, is to engage yourself in helping others. The special needs students loved him, and it did wonders for his self-esteem.

This lead to him deciding that this is what he would like to do with his life. He wants to others with special needs. Recently,  he earned his Paraprofessional Certification from our local community college! He hopes to be hired full-time this coming year as an Instructional Assistant in our local school district! Hence, he is volunteering now, in hopes to gain exposure and more experience so that he can ultimately become a full-time employee.  (Yeah. Another one of mama's ideas.)

He still has a way to go towards independence. I still worry ...I still wonder if he will be able to make it on his own.  Living in that group home where things are less than ideal has certainly helped with his motivation to want his own apartment.  He will probably still need a certain level of support no matter what, at least for the next few years.

I pray that he will find an awesome roommate be able to get his own place soon. At least, that is his goal.

Maybe someday, he will find a wife who will compliment his strengths and weaknesses.  
Dear God, I hope so!

Meanwhile, I hope to graduate someday further into the background of his life, playing a much smaller role. I want to retire from motherhood. I daydream about this every single day. Yeah. I know we can't really retire. I would at least like to take a sabbatical!

I hope that I can die some day peace.

I still worry.

I still wonder...
Will he be able to make it on his own?
Will he ever drive?
Will he ever be able to navigate his life without my help?

There are still many "what ifs."

At the same time...
There is progress.
There is hope.

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Monday, February 15, 2016

Autism-isms -Snow Days by Jamie Cruit Knopik

Editorial Note: 
Today I am pleased to bring to you this guest post by fellow autism mama Jamie Cruit Knopik. 
When I read this post on a private support group, I knew I had to share it here on the blog. It has that loving autism-mom, quirky sarcasm, exhaustion and a side order of humor about this crazy autism life, that I  love. 

In the wonderful state of Minnesnowta, there are some hardcore, Eskimo-like, winter surviving people. We don't get too many snow days. If they shut down schools, it's Defcon 2. Well, we hit that on Tuesday and Wednesday this week.

I'm talking early release, stuck in the house, stir crazy, iPads are dead cuz you won't let them charge, destroy the house, acting a fool, kill yo brother, have 20 meltdowns, autizzle to the nizzle, freak out, shove handfuls of chocolate down your esophagus (ok that was me), go all The Shining up in here type of days.

Then we have Autism.
Lovely, lovely Autism.
Autism NEEDS school. Like every single day.
Autism needs structure, routine, and an Occupational therapist on hand.
Autism hates snow days.
Snow days, bad.
Snow days Bring out the crazy.
Winter gate causes Autism to go all nuclear and have an Autism meltdown. Nobody wants this. Cuz there ain't no meltdown, like an autism meltdown. Cuz an autism meltdown won't stop. (Thanks Master P for the inspiration).
My house looks like it was ransacked by looters looking for free TVs.
A good bit of Monday was spent cleaning it up from the weekend.
If it was summer, they'd be outside swinging and half naked trampolining. (Donovan).
But it's winter so they are inside naked, trampolining all over my couch.
Today they are back in school, and I am exhausted.
I need to clean my war zone, but I'm sooo wiped out and running dangerously low on chocolate.
Autism doesn't just affect the person who has it;
Autism also affects those who do not.
I have second hand Autism.
The moral of the story is that autism and snow days don't mix.
Autism is hard all the time, but on snow days, Autism is a punk ass bitch.
That is all.
Off I go to clean the trenches.
Carry on.

Jamie lives near the metro area of Minneapolis Minnesota. She has three children on the spectrum. Donovan will be 15 in April, Gracie will be 10 in May, and Alex will be eight in May. She also has a three-month-old baby boy named Davin.  Jamie is in the process of writing a book called Autism-isms: My life on Autism Avenue. I can't wait to read it! 

Monday, February 8, 2016

The Right to Pee

For so many years I didn't make the time for therapy. It was yet another one of those things that I put on the back burner while I was too busy raising my children, taking them to all kinds of therapy. 
Now, I feel like a kid in a candy store every time I pull up to my therapist's office. Me time! Woo hoo! I'm gonna get sane. (In my sing-song voice.)

Therapy is helping me to put self-care on the top of my list.  It helps me remember to keep the boundaries that were erased by years of raising two children who demanded that their needs be met immediately. 
The other day, I realized that I still find myself holding pee. I have been conditioned to believe that I just don't have time. I always had to be in a hurry to do something for someone, to pick someone up or drop someone off somewhere, to make sure that all of their basic needs were met before I met my own.  
I confess for years, while in the thick of raising my children, I didn't take showers as often as I should have. I always felt like I had to choose how to spend my free time. Should I write or take a shower? Should I take a nap or take a  long hot bath? Should I eat or take a shower? But mostly, should I get some more sleep? I was always behind on sleep. 

I stepped into my therapist's office a few months ago, a blithering mess from the stress of dealing with Red’s transition into adulthood and out of my house. It turns out that constantly being the diffuser of explosions in your home can fry your nerves and kill a few brain cells. 
Even when there wasn’t an explosion, I was always preparing for one. I could hear screams in my dreams. When it was quiet, I was wondering why and when the quiet would be jarringly interrupted. If I was behind my closed bedroom door, who would burst through it, or start banging on it at any given moment. I hear footsteps. Are they coming towards me? Shit!

Being a mother for me meant years of trying my best to keep everyone in my house happy or at least from being sad, depressed and angry which of course, was impossible, not to mention, not my job. Making others happy was often at the expense of the things I wanted to do that would make me happy. Are mothers entitled to be happy or is that something you give up in labor and delivery?

That people pleaser in me spilled over into other areas of my life. I'm like Joy from the movie "Inside Out."  I want to be happy. I want my friends to be happy. I want my siblings and my parents to be happy. I certainly do not like upsetting or disappointing them.  Confrontation must be avoided at all cost. I don’t enjoy arguing. I live with people who seem to live for it. I don’t like being mad at people, and I certainly don’t want people mad at me. When you live with constant bickering and fighting, you try to avoid conflict in other areas of life.  
The trouble with all of that is that I found myself constantly giving myself away, one little piece at a time until there was nothing left besides stress, anger and resentment. I found myself always doing things I didn’t want to do. I was slowly losing my mind and becoming an anxious wreck, always taking on everyone else's negative energy and problems.

I am taking some of that power back. I am learning to say, "No. I'm not doing that."

When my father passed away two weeks ago, my husband volunteered us to do the obituary for the memorial service. He also tried to get us involved in setting up some kind of scholarship fund. I was like, 'Hell no! I don't have the energy for that.' You go right ahead if you want to. I did the part of the obituary that I wanted to do. I did the research, and I wrote it. I wanted no parts of figuring out the layout. I didn’t worry about how he waited until the last minute to get it printed. It was his deal, not mine. I set a boundary for myself, and I stuck to it. 

When I got to L.A. for the memorial service, I didn’t try to do my usual running around here and there and everywhere to see my friends. I let them come to see me at the memorial service. (It was really like a party, at a jazz club and bar, but that's a whole other story.) It was so wonderful seeing everyone, but when they all requested special get-togethers after the fact, I knew there was no way in hell I was going to do it. Sorry, friends. Red ruined that for you. I can’t stretch myself too far anymore. I just don’t have it in me. Instead, I spent the time with my family. And I didn’t even let that stress me out. If I couldn’t see my siblings at every single possible moment, it was perfectly o.k. (Okay, I felt a little guilty the day I didn’t make it down to my dad’s apartment to finish cleaning it out.) I was a little pissed that my husband and son were moving too damned slow to make it happen. (But, I digress.) The point is, the world did not end because I did not stretch myself too far. 
Last night when Blue started having a meltdown because he was unable to register for accommodations for the S.A.T. Dad comes into the room and as usual, starts adding fuel to the fire. Ah ah ah! Pump the breaks. Boundaries. I did not allow myself to get sucked into their crap. The difficulty they have communicating right now is THEIR deal, not mine. I can’t fix it. I can’t always diffuse it. I certainly can not take it all on and allow it to drain my energy. They are going to have to work their shit out…or not. I can’t do it for them.  I will not do it for them. 
Stolen from my friend Elizabeth Gilbert's FB page.
I am learning, better late than never to step back, to let go, to not engage, diffuse and try to fix every problem. 
I have worked double overtime for years. For now, I don't have to spend every moment doing something on my never ending to-do list. I have the right to:

  • have compassion for myself.
  • set and keep my boundaries. 
  • take time for me and not feel the least bit guilty about it. 
  • allow myself time to grieve for my father in whatever way I need to. (Which may include wearing black around the house, so that people will remember to leave me the f8#% alone.) 
  • allow myself time to adjust to the transition of letting Red go. Allow him to grow into adulthood, without me holding his hand along every step of the way. 
  • I can just be. 
  • I can take a long, hot, showers and not get out until the hot water runs out. 
  • I can pee every time my bladder says I need to. 
  • I can be an individual, not just a mom, a wife, a friend, a sibling, daughter, and caregiver. 
Most of all, grown-ass folk who can do for themselves should.  My family is now full of grown-folk, including the soon to be 17-year-old, who never wants to be told what to do.

It's my hope that at least one person will read this, take just one step back and save yourself from extinction. 
Be well or at least, half-way sane. 

Sunday, January 24, 2016

Blue on Hollywood

Earlier this week, my father passed away. I've been trying to prepare myself for his death for the past couple of years. But are we ever really prepared? He was 86 years old, diabetic, stubborn and was also recently diagnosed with cancer.

I use the term stubborn because even though his health has not been the best, he refused to listen to doctors, health-care providers and his children.  He has been in and out of the hospital dozens of times, recently. Sometimes, he would refuse to stay in the hospital and would check himself out against doctor's orders. Other times, he would refuse to leave the hospital, when they said he was stable enough to go home or they recommended a skilled nursing environment.

He lived life on his own terms, despite the challenges that he faced.  I can't be mad at him. It was his life to live however he saw fit. If you follow me on Facebook, you may have read some of the crazy stories that I've written about him over the past few years.

His friends called him Hollywood. Even though he was born a poor boy in Arkansas, and raised in St. Louis, Missouri, his personality was larger than life in any of those towns.  He went on to make himself a success in the Hotel industry.

I am still in the midst of processing my feelings over his passing. I am trying my best to hold on to the good memories ...and there were many. I'm sure I will write more about him later.

Today, I thought I would share some thoughts from my son Blue about his feelings over his grandfather's passing.  He wrote this as a Facebook status a few days ago. He is allowing me to share it again here. Let's go inside the mind of a pretty special teenager with Aspergers...

"My grandfather has passed away as of Tuesday morning. (January 19, 2016).  For the past two days I've tried figuring out what I wanted to say and now I know what to say. I never formed a huge bond with him. I only saw him once every year. I could never feel as much pain as my mother or all of her siblings are feeling.

Blue & Grandfather, August, 2015
I last saw him this past summer and to be honest, it was probably one of the best times I had with him. I wish I could have talked to him one more time before he passed. 

Although this tragic event has transpired, I was already experiencing stress for the past few weeks, with me getting back to school, starting Drivers Education, a scandal with one of my teachers, and me not getting along with my father. I changed my medication this past November and I have slowly been changing. I am more self-aware, more agitated and more stressed out. The good news is, I am also not gaining weight anymore. 

With so many things transpiring one after another, I have fallen behind in my school work and I am less focused on my daily tasks. Now, my grandfather has passed. What am I gonna do? 

Right now, one thing is important to me. Life has been shouting it in my head, I need to be a better and stronger person. I need to be smarter. I need to be a better friend to everyone, a more loving person, a more moral person. I need to work harder. 
Blue & Grandfather, on a visit to his school for lunch. 

With everything going on I am becoming closer to everyone in my life, friends, family and even people at school. That's all I care about now, not thinking of myself as much but being there for everyone. I know that would make my grandfather proud.  I will eventually get past all of this stress because every situation is temporary. I just want  my family and friends to know that I love and care about all of you. You all mean a lot to me. For all of the bad things I have caused any single one of you, I am sorry for all of that.  I will make it better from now on. 

Thank every one of you for being in my life and I promise me being in y'alls life will definitely worth it."

This is dedicated to my father, Ward "Hollywood" Wesley.
April 22, 1929 - January 19, 2016

As my niece Erin G. Wesley said today, "Loving you eternally and hope you're causing pandemonium in the afterlife. Onward."