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Wednesday, May 3, 2017

All of the thoughts...

So many thoughts in a given day.  So many feelings of complete overwhelm. I haven't written about my mother's troubles in great detail, but they feel huge and weighty. Perpetually occupying space in my already overcrowded head.

I can't see her without thinking all of the thoughts and feeling the sadness over this space that we're in. You know that when you're taking care of a parent, sooner or later you will be dealing with health issues, and ultimately you will have to face their mortality.  You hope that it will be short and painless, but that would be impossible. There is no such thing. You hope that you will be prepared for whatever comes. I was not prepared for this. 

She is not near death but her issues are not easily "fixed" if fixable at all. And yet, I constantly think about what I can do to help her. What will make things better? I just want to see her happy and enjoying this time in her life.

I was writing while sitting in the airport. When I got on the flight, I noticed that somehow I hit publish instead of hitting save and 71 of you have already read my incomplete thoughts so...I guess I should finish this post.

I can never make a reservation without hesitation.  Thoughts about all of the things and all of the people and details must be considered before I take off. Even this time as I head to Los Angeles for the memorial service of my brother who passed earlier this year, I have to consider my mother.

This time, it wasn't so much about my kids (who are not really kids anymore). It was more about my mom. I didn't want to leave her at home. I didn't want to take her with me. Maybe I'm lazy or maybe I'm just tired of constantly having to consider others before I go to the toilet, much less anywhere else. I didn't want to have to consider her every time I move from place to place in L.A.

Will she be okay? Will she comfortable? Will she be upset because I went here or there?

As it is at home every time I move, she is watching.  She's asking, "Where are you going? When are coming back? Why are you going upstairs?  You're going to bed now? Why can't you wait?"

I've never been a loner, but my God! My family has turned me into one.

I went ahead and purchased the ticket because of course, I should go support my other siblings as we lay my brother to rest. I'm just so peopled out right now. And as much as I want to see everyone, I also would really like some time to be completely alone and not worry about anything or anyone. 

It's weird to be going home not excited. I really don't feel like peopling.

Parenting and caregiving has turned me into someone I hardly know. I'm sure I'll get my groove when I get there.

Hopefully, I can spend some time with my feet in the ocean ...just being.

Tuesday, April 25, 2017

Girls, Girls, effing Girls!

Young love. Isn't it everything? I certainly thought it was when I was a teenager and a young adult. Now that I'm a mother, not so much. It's murder watching my kids go through heartbreak.  Which is why I would basically like to forbid both of them from ever looking at females until they are emotionally ready to handle all of the feelings that come along with them. 

Girls, girls, effing girls! These situations make me want to scream! 

When they ask for guidance about their relationships, I feel my veins tighten, my stress level elevating. I feel like it's all a big setup --a trap so that when it all goes wrong, it will be my all my fault! Because everything that ever goes wrong in their lives is my fault. 

I was a hopeless romantic as a teenager.
There was no instruction, other than romance movies which are so authentic, right?
I was totally Sandy from "Grease." Hopelessly Devoted. 
I had no idea what I was doing.
I only thought about how good it felt when I thought I was in love.
I didn't analyze the meaning of love or calculate the probability of heartbreak.
I only thought about how handsome, sweet and popular my fellow was.
I didn't completely fall apart every time a relationship ended to the point where I couldn't sleep or handle the rest of my life. 

Young, immature and lacking confidence in myself, having a boyfriend gave me a sense of validation. I didn't see myself as attractive. I lacked confidence from all of the teasing in middle school about my rather large nose. I didn't have long pretty hair. I had dark skin. I thought I was average at best.

Looking back now,  I was cute as a button with a slammin body! I would give back my children to have that body again.
Hawaiian Day, Circa 1983

Now, I'm a mom of three young men. Two of my sons have autism. They are twenty-one and eighteen.

Some people think that autism means they may not want a relationship. Maybe they're  loaners --socially reclusive. Maybe they don't want to be intimately social.  Nothing could be further from the truth. My boys crave social relationships.  The lack the ability to read people just makes them more difficult.

They want affection like every other hormonally charged teenage boy. Ultimately, they want what they've been fighting for their entire lives --to be accepted for who they are. They are just not clear about all of the interpersonal dynamics of relationships, especially with females. 

I get these dating questions...

"Exactly how many dates should I go on before I ask a girl to be my girlfriend?"

"Well, first of all, you don't ask every girl you think is pretty to be your girlfriend. It's not like middle school. You take the time to get to know her, become friends and then decide how you feel and if you have things in common.  Now that you're older, relationships become more intimate, so you really have to get to know one another first."

"So exactly how many dates is that? Two? Five? Ten?"  *Insert eye roll here. 

I have discussed this subject with other moms in one of my online support groups. We have to remind our young men on the spectrum that a girlfriend is not a prize. A girlfriend is not a status to achieve. Each individual comes with their own thoughts and feelings, and they may not be the same as yours. You have to listen to them and not just talk. You have to get to know their wants and needs and consider their feelings, not just your own.  These things just don't come to our boys naturally. 

Sometimes, I am asked blunt questions about sex...things that I would NEVER have considered asking my parents.

"The more attractive the girl,  the sex feels better, right?"
"I have to keep in shape and have a perfect body so I can have better sex."
OMG seriously dude?  

Me -"Umm...not really. There are a lot of factors that play into what makes sex feel good. How you look has very little to do with the actual feeling. Connection with the person you're with is a huge part of it."

He just looks at me like I have three eyeballs. I think he imagines that sex is just like it looks in Hollywood movies.  The girl is always totally hot! And the guy has six pack abs. 

No. My dear.  Even old, fat people like me and your dad still enjoy sex! 

My eighteen-year-old is an old soul. In the past year, one might say that he is intensely interested in love. He has studied it it's a science.  He reads articles about it. He researches the history of it. His thinking about it also seems to be very intellectual, black and white, and quite frankly, pretty idealistic.

So in real life, when gray happens, it totally knocks him out of the water.

There was a girl.  They had so many things in common. She seemed like she genuinely cared about him as a person. They were developing a lovely friendship. When he decided to express his true feelings, she practically disappeared off the face of the earth. The semester ended. Summer came, and he did not hear one single word from her.

He was left laying in the middle of the road after being hit by that truck. It seemed like it came out of nowhere.

That was last summer. And OMG! It was the most miserable summer of our lives! And we've had some pretty miserable summers. His misery was the shock and intense emotion of loneliness and heartbreak. Mine was taking the shrapnel from the bomb(s) that went off every time he melted down over anything and everything. 

I saw the signs before it happened. Of course, it wasn't my place to say anything. He would have chopped my head off if I did.

The signs were subtle. He was always the person reaching out, going out of his way to do things to make her happy. I never saw her reaching back. She was always "so busy."  Someone new to the game of teenage dating and having autism, he missed the signs.

Many with autism have difficulty reading the emotions and social cues from others. So the learning curve in their relationships will ultimately be higher.  Autism can be like wearing a mask which makes the signs that someone doesn't feel the same way you do, easy to miss.

What you see is what you get from most people with autism. My boys expect people to say what they actually mean because they mean what they say.  If a person with autism says he's your friend, he really is your friend. At least that's what I find to be true with both of my sons. They will be there for you for life if you'll let them. They are loyal and authentic. They don't play games. They don't really know how. So when other people are not honest, or they suddenly change their minds, it's extremely confusing.

Most people with autism feel emotions intensely. It's the way their brain works. In my boys, their emotions seem to make feelings appear bigger. Every hurt and disappointment can feel like the end of the world.  This is especially so with a feeling they've never felt before or when something happens that they were not expecting.

What are you supposed to do with all of those feelings when you thought you finally found the person you always wanted, and it turns out they just don't feel the way you expected they would? It can feel pretty overwhelming for the average person. Autism magnifies everything. 

Love is a rainbow. Love is fluid.  It's ever changing. It can be evasive.  It can be pervasive. It is so many got damned things, it will make your head spin. It makes it pretty difficult to handle for someone who thinks in formulas. If you add two and two you are supposed to get four, not negative four. 

For those of us who have experienced love in various degrees, we know that it can be the best thing ever. Then when it's over it can knock you out. I'm talking... laying on your back, up under the covers for days wondering if you will ever feel anything good again. Seriously like... will you be able to stand and take another step, or will you just lay there and die? 

Experience tells us that eventually, you do get back up. You do rise again. You walk and then you run. Ultimately, love finds you again. Sometimes it's even better than before.  Sometimes it's just an experience that makes up a part of who you are.

There is no "sure thing." So if you're a person who likes to know what to expect, when it comes to human relationships, there is no standard expectation. Let's face it, most teenagers are flakey. They don't know what they want. So when they find themselves in a situation with a person who has such intense emotion, it probably freaks them out a little.

Blue has told me, how hard the open-ended part of relationships is for him. His anxiety really would like some guarantees, some assurances that it will all work out. Love is a world in which there are no guarantees. 

The longer we live this life, we start to see that for every closed door, there is a new one that opens that could have a new wonderful prize behind it. I tell my boys, every relationship teaches us something about ourselves that we didn't know before, and that's okay.  In fact, it really is a good thing.

The person who acted like they cared and then stopped reaching out. The next time that happens....ding, ding, ding, ding!  Hopefully, an alert will go off. Something ain't right here.

So many nuances of life unfortunately only come with experience and usually with some degree of pain.  When you're young, and you have autism, these subtleties can slip right by you. You may not see them until it's too late. 

At twenty-one, Kendal still thinks, you see a girl, you think she's cute, you ask her to be your girlfriend. Then, you expect her to behave in the exact same way that your last girlfriend did.

What? You mean they're two different people? Aren't all girls basically the same? How exactly am I supposed to figure that out?

We find out these things from experience. When you have autism and you have a vision of the way things are going to go and then they don't... it can cause real fireworks. It can set off a shockwave of emotion and sometimes anger. Add together immaturity and autism, you simply do not have the tools to handle all of the intense feelings.

Okay, so I'm the mom. I am their person.
Got damn! How I wish sometimes, I wasn't their person.

Because they are transitioning into adulthood, I try to step back from being their person.
I try to run away from being their person, but sooner or later, they always find me. And when they do, they shoot me with bullets of emotion, and feelings, and questions about how all of this is relationship stuff is supposed to work.

I can run, but I can't hide.

What they really want is a sounding board. They want someone to process their feelings with. Yes. They both have therapists, but I'm the in-home, on-call, 24/7, therapist.  They both need something more like a therapy school, like 5 days a week,  several hours a day, at least. Come to think of it, I do too.

Sometimes they will talk to their dad. Kendal actually listens to his father better than he listens to me, but he will NEVER go to dad first. Dad's reality check is the last resort. Blue and his father are so much alike, they can barely have a conversation most of the time. They are both so rigid in their thinking. They end up setting each other off.  Apple meet tree. 

Occasionally they will use other resources, their relatives, mentors, and friends. Eventually, through enough experiences, they will learn. Lucky me. I get a front row seat to it all. It's an entertaining show, in a horror movie kind of way.

Hopefully, I won't die of stress before they meet the right girl. I pray that someday they will find someone to take them off of my hands. Oops. I mean, I'm praying that they will both find the right person who loves and accepts them for exactly who they are, unconditionally.

Seriously God. I've done my time.

Give a sistah a break will ya?

The good old days, before girl questions. 

Tuesday, March 28, 2017

Words Can Hurt

After all of these years, and hundreds of meltdowns, they still suck the life out of me. This latest one took days for me to recover.  PTSD is definitely a factor. So many years of these traumatic events give me flashbacks of shattered glass, broken doors, holes in walls and rips in my heart. 

Experience has made me better at keeping my cool. The “don’t do’s and to-do’s” are now ingrained in my head. 
  • Don’t raise your voice. 
  • Don’t argue. 
  • Don’t advise. 
  • Don’t talk, just listen. 
  • Know when to walk away. 
  • Do not invite more debate. 
  • Keep your answers short and to the point (if you talk at all).
  • Deescalate. Deescalate. Deescalate.  
  • Don’t lose your shit! (not always possible, but try) 
  • Don’t knock him in the head even though you feel like you have every right because he is being an ungrateful… (okay, I won’t go there) 

How I feel after a meltdown
photo -made with Bitmoji

You haven't had a full meltdown in several months. Thankfully, we've only seen short bouts of anger that have been quickly resolved. I'm proud of that progress. 

I know you’re feeling all of the pressure that comes along with your senior year and becoming an adult. The weight of it is excruciatingly heavy, I know. 

So the other day when you suddenly went all the way off into a complete rage, which ended in me be called a most egregious name, I was floored. It caught me totally off guard.  I was able to remain calm, but afterward, I felt like I had been punched in the gut --the wind knocked out of me. 

Of course, I've heard “I hate you,” (which isn’t fun, but it’s kind of expected at some point of parenting. You'll see when it's your turn.)  

I'll admit, I remember saying some pretty awful things to my mother when I was a teen. However, I don't think I EVERcalled her outside of her name. In fact, I don’t think I ever cursed in front of her until I was very much an adult. And my mother could be pretty darn irritating, as I’m sure I am to you. 

I have never been called such a name by anyone I love. You’re father, old boyfriends, not even a close friend family member has ever gone there with me. If I was ever called that, it was by someone who really had no regard for me, certainly not someone I know and love intimately.

So when it happened the other day it was shocking, to say the least, and hurtful. Especially because I know that I am your person —the person you call when you need help. The one who does everything within my power to make your quality of life better. It felt like a huge slap in the face. 

The next day, I went straight to thinking of your future…

Dude, you say that kind of thing to a girlfriend or a wife, you won’t walk away from it with a simple apology. In a future relationship, the woman will not be obligated to forgive you. 

A mother’s love is probably the most unconditional love you will ever experience in your life. You are part of me. We are forever connected, so I forgive you. I may not forget, but I always forgive. Eventually, I let go. But don't get too comfortable with that, because you will probably NEVER see anything like it again in your life. 

So the next day when you're over it. You were already back to…
“Mom, can I have some money?” 
“Can you give me a ride?” 
“Can you help me coordinate transportation for my friend’s birthday celebration?” 

Um…no! I wasn’t feelin all of that. 

You see in a future relationship, if you mess up like this, you better not only say you’re sorry, but you should be busting your butt to actually SHOW the person that you’re sorry. I’m talking bringing flowers. Doing something …extra. 

Now I know, I’m not your girlfriend. I don’t expect flowers, chocolates or diamonds (although they wouldn’t hurt).  

I’m just saying, I doubt seriously if you will ever find someone who will put up with all of the crap that I’ve put up with because I get you and your autism.

So far you have demonstrated nothing but the utmost respect and kindness in your relationships with females. Of course, a girlfriend or friend who is a girl when you’re a teenager looks nothing like a long-term relationship, where you have to put up with each other’s moods and idiosyncrasies because you spend so much time together. 

I tried to explain to you the gravity of what you said and how it made me feel. I could not assume, that you just “know better” (although you should). I realize that you may not be fully aware of what you’re saying when you’re in a rage. But then again, I think there is some level of consciousness because you’re hurting and I think you want to make me feel the pain that you’re feeling. 

I didn’t want to shame you or make you feel worse about what happened. But I had to let you know that it will take me some time to deal with my feelings and to let go. And even then, I will probably never forget. 

I was deeply hurt and I wasn’t ready to smile and pretend everything is okay the following day.

So …no, I would not be transporting you around town to hang out with your friends for the weekend. I really didn’t even want to look at you for a few days.  

I realize that things are said during a meltdown that you don’t really mean. However, the hurt is still hurt. It doesn’t just magically disappear just because YOU have moved on. 

Damage is done with words. 
Scars are engraved. 
I have the right to feel injured. 
I don’t have to smile and pretend that everything is okay. 
To do so would be a disservice to you in your future. 

In reality, you’re going to have work extra hard not to hurt those you love when you are seriously angry. I know that’s not fair. So much about autism and life is not fair. It’s going to require some conscious effort. I trust that it will get better as you continue to mature. I think there is still a sensitive boy inside you who would never want to hurt anyone with words or actions. 

There will be times when you lose control, we all do. But I have to let you know that sometimes the wounds created are deep. They don’t just disappear. They take time to heal. 

p.s. Before I wrote this I thought, "Oh! The thought of my mother writing publically about MY behavior when I was 18. What horror?! But then I realized, if I didn't want her to write anything bad, I should have behaved better.

Favorite Quote Ever -Ann Lamott
Photo Credit: Not Mine? 

Tuesday, March 21, 2017

How Did This Happen?

Wow! This is my kid! How did this happen?

I stopped by Gold's Gym where he works and exercises to drop him a little cash. He never carries money. He just swipes his card for every little purchase. I personally hate the idea of him never having cash in his pocket (not that it's really my business). 

I had not seen him in a week, so when he comes out in full work-out gear —his weight-lifting belt and gloves, showing off his small waist and broad, muscular arms. He had just finished lifting. The definition of his physique notably more pronounced, veins popping out of his arms. How much he has grown and developed his body was strikingly noticeable to me. Especially, because he's always complaining that he doesn't feel like he sees results! 

This boy who was overweight most of high-school, his body all puffed out as a result of horrid medication and an even more horrible diet.

 “There’s nothing better than a cheeseburger and a milkshake,” he would say.

Throughout most of his childhood, his diet had never been good. Anything green was a definite, "No!"  Everything he ate had to be plain and dry. There was no mixing together of foods. Everything had to be separate and distinct —no casseroles, no sauces, nothing wet or too soft in texture. Even french fries had to be skinny and crisp so that they didn’t taste too “potatoey.” 

Occasionally, I may have been able to coax him into a healthy meal, but Lord, the drama that came along with it. Ugh! It completely took away my joy of cooking. Days slaving in the kitchen, only to be met with, “Do I have to eat this?”

The expression on his face was as if the food I was feeding him came from the trash can. 
"The look"
He was oppositionally defiant from the moment he could walk …away from me in the opposite direction of wherever we needed to go. His defiance crossed over into him defiantly eating only what he wanted to eat and not what I wanted him to eat,  as soon as he learned to say no. There were so many fights day after day.  Most of the time, I was just plain out of energy. 

Cut to when he turned 18 years-old. He was working and buying his own food, which meant eating absolutely nothing healthy. One day we walk into his Psychiatrist's office and this time he tips the scale at 280 pounds. "That’s it!" She said. "You must change your diet …today! You can’t keep heading in this direction."

Hah! First of all, I laughed that she thought that was going to work. Secondly,  I felt like it was at least half her fault for all of the bullshit medicines that she tried over the years in order to tame his moods, depression, and anger. I had a real love-hate relationship with both his doctor and the medication. 

We had been working on tweaking and changing medication for years. I knew that what he was taking was partly responsible for the mega appetite and the propensity to gain weight, not to mention, his behavior was still horrible!
Milkshake and Cheeseburger Days`
To my surprise, that day when we left her office,  we got home and he decided to get rid of all unhealthy foods that he had bought. "Give this stuff away! We have to get it out of the house!" Suddenly, there was a light so bright! The Lord arrived and the angels sang, "Glory, glory hallelujah!" 

In the weeks to come, he started researching on YouTube about weight-loss and bodybuilding programs. We had previously insisted that he actually workout at the YMCA gym where he had been employed for two years, both to help with his mood and his weight. We would tell him "We are not picking you up from work until you swim at least ten laps in the pool." 

Two painful hospitalizations later,  we finally got him off of that horrible mood-stabilizer and onto the right combination of meds. It took an act of congress to get the doctors to listen to my instinct.  My goal was to get him on as few medications as possible and to take nothing that had a weight gain component. 

He then researched a high protein, low-carb diet. He became obsessed with it, along with his workout routines by different trainers online. One year later and 100 pounds lighter, he was a different person. 

One of the main ingredients in his transformation was the fact that it was ultimately his decision.  Self-motivation is key to a person with autism deciding to achieve a goal, especially someone as defiant as Kendal.  He is capable of doing anything that he sets his own mind to conquering.  No amount of coaxing from us could have ever made him completely change his life. 

We are entering into his second year of this new-look. As with everything in his life …his accomplishment is still not good enough for him.

“I want to be elite! I want to be the strongest guy in the gym! I’m still weak compared to other guys.” 
“I need the perfect formula to get stronger.”

He asks the opinion of any and everyone who will listen to him.

"What should I do to get stronger tighten my abs cut this remaining fat around my belly?"
"If I start to bulk up, won't that make me fat again? I never want to be fat again!”

He works in a gym! He is surrounded by trainers and like-minded people.  Yet, no one has given the magic answer.

The latest request?
 “Mom. I need to hire a coach to figure out exactly what to do. Will you help me hire a trainer? They cost about 100 dollars an hour.  Will you pay half?” 


“But Mom! I’m not as strong as so and so, or so and so. I want to look like the Rock," he says 900 million times, whenever I talk to him or see him, until I zone him out, walk out of the room or hang up the phone.  

He changes from cutting to bulking, from bulking to cutting every other week.

What he should do next about his body, his workout routine or his diet, is the only thing he posts about on Facebook ad nauseam.  God bless his friends who continue to comment and try to help him.

One of my Facebook friends from high school even gave him his phone number so they could talk about these things. This had to be a God thing. As in, God saving me from killing him because he won't shut up about it!
(Thank you, special friend. You know who you are.) 

Still, he wonders why women are not falling all over him because of the way that he looks. We try to explain that there is so much more to finding the right relationship.  Women want someone who will listen to them, and not just talk about themselves, constantly. This doesn’t compute for him.

He is currently taking an online course to become a certified Personal Trainer, with the help of his Transition teachers. So when he asks me about helping him pay for a trainer, I tell him to hire himself.

There are no magic answers. He's already way ahead of the game! Time and persistence will continue to give him results. 

I pray that when he begins to work with clients, he will be able to acknowledge them for their progress, however incremental. Currently, he can not see his own progress. Everyone who looks at him sees this incredible guy who has completely transformed his body. He still sees someone who is not good enough. 

I’m proud enough of him for the two of us. I just hope that someday he can be happy and satisfied with himself. He wants so desperately to find love and acceptance. I’m afraid that it won’t come until he learns to love and accept himself. 

Edit: After having Kendal read this post, he wanted to add this. He actually lost 120 lbs total and since then has added 20 pounds back of muscle. He approves of this message. 

Wednesday, March 15, 2017

My Own Hero

A week ago I was so angry with my husband. 
I felt like I was just done. 
I can’t do this anymore. 
I’m tired of this life. 
I’m tired of living with the choices that I made 25 years ago when was young and too dumb to know anything about who I am, or who I wanted to be. 

Turns out marriage isn't anything like what you see in the movies. In fact the other day, I was watching one where the heroin passed up a chance to travel around the world with a very rich, handsome, lover. She wanted to wait for real love --the one who she would marry, and live happily-ever-after. I wanted to scream at the television, "Girl! you better get on that jet! It ain't all it's cracked up to be!"

We got married when I was 28 years-old.  
What the hell did I know about life, motherhood and being a wife? 
I was a self-employed, entrepreneur who saw no limits in this world. 
I thought that I was tired of the party life. 
I was tired of the dating game. 
Apparently, I was tired of being independent with the freedom to travel wherever the hell, I wanted to, whenever I wanted to. *rolls eyes at my younger self 

Cut to today, and I am a completely.different.person. 
Next month I will be fifty-two years old.  
On June 4th of this year, we will celebrate 23 years of marriage. 

Together we have raised three sons. The eldest is 28, (my step-son). We also have a very high maintenance 21-year-old with autism and a cocktail of other diagnoses.  And finally, we have my 18- year-old know-it-all who also has high-functioning autism that comes along with a shit ton of anxiety which makes him really fun to live with. 

I have pretty much made these children the focal point of my life for the last …forever. 

And frankly, and I am just plain tired of them …all of them. 

I know you’re not supposed to say that out loud. You’re probably not supposed to think it either, but I do. 

I’m surrounded by all of these men and they are so …for lack of a better word, male.   Sometimes I look and them and wonder, who they are and how the hell did I end up here? 

So the nest is almost empty. I thought I was getting close to being done. Who am I kidding? In my head, I am done. This shit is over! O.V.E.R.  The whole marriage, and motherhood thing ...I am ready to check out! Sayanara! Arrivederci! I'm out! 

Not only am I burnt out, I am burnt to a crisp!

But then I wake up and I realize, this job is NEVER really over.  
Raising two boys with autism has been like raising six children.
I have the right to be tired. 

I thought raising teenagers was hard. Well, it is! 
The transition to adulthood is just a whole new mixed bag of nuts. The teenage, silly high-school problems are over. 
Now the real life decisions have to be made.  
Who are they going to be in this world?
Will he be able to finish college? 
Will he at least get some kind of a post-secondary education so that he can be independent? 
When will they conquer the skills of daily living? 
When will they ever be able to manage their everyday lives without help? 
They are both so different, with different strengths and weaknesses. 
When will the dust settle?
The ups are higher. The downs are lower and have heavier consequences. 
They are boys. It takes the average boy a little extra to grow up. Add anxiety, mood disorder and autism to the mix and you can multiply that extra by ten

And then, scratch the record! 

Now, I’m in the throes of taking care of my mother who at 77 years-of-age, is beginning to lose her shit a little more each day.  I have yet another puzzle to piece together. 
I am scared. 
I am overwhelmed and frankly, a little pissed off that most of this is on me. 
She lives in my house and my brother is thousands of miles away. It doesn’t even matter if she didn’t live here. 
I am her person.
I am everybody’s freakin' person!
I am the anchor that keeps them all from floating wildly across the ocean 
Only I’m drowning in the process. 

So for a week I only spoke to my husband when it was necessary.  I was angry even though he hadn’t done anything particularly egregious.  I mean he’s a man. He says stupid things when he’s stressed. We think differently —so very, very, differently.  He is practical to my artistic, go-with-the-flow. He is the no, to my every yes
I don’t know how we haven’t killed each other already. 

He takes my sarcasm and humor very personally, which subliminally makes me even more sarcastic. Our relationship is a real piece of work -or is it a work of art? 
I’m not sure. 

He gets on my very last nerve with his incessant talking and I get on his nerves with my jokes. But basically, he is good.  He loves me and wants nothing for the best for me. He wants me to be happy. He is loving and faithful. We have never had any major marital issues. 

I’m sure he’s frustrated when I am not happy.  He wants to be my hero. Only, in this case, he’s in over his head. He can’t do it. He can not be my hero because he is not responsible for my happiness. 
My happiness belongs to me. 
I have to be my own hero.

So yesterday, the sun came out. It had been cloudy and cold for a number of days and apparently, so was my heart. As the sun burned away the funky fog and clouds that had been hovering over me. Suddenly, I could see.
We had a conversation, where I thought I would tell him all of the things he had been doing wrong. But in the course of the conversation (or should I say, in the course of him talking and me listening) I realized that he hasn't been doing anything any differently than he has always done.
It is me that I have been unhappy with. 
I am unhappy with what I’ve allowed to happen to my life. I have allowed a big part of myself to completely disappear behind the cloud of my obligations and duties to this family. 

It is was through the darkness —depression and that week long funk, that I was able to find the necessity to look for the light —to figure out that I actually need to be my own light. No one can do it for me, and no one can take it away from me.

I can not tell you today exactly what I’m going to do to find the parts of me that have been erased, but at least I know now that a part of me is missing.

I have to do some exploring —some soul searching.  It’s up to me, and no one but me, to get out the road map to find the peace and the freedom that I need to make myself whole again despite my situation and my obligation to my family.

The biggest obligation I have is to myself. 

I think I'll keep him.

Friday, March 3, 2017

Not Alone, But Lonely

A couple of weeks ago I wrote a thank-you note to autism moms about all of the "Invisible Jobs" that we do each day. One of my readers sent me a thank-you note out of the blue. It touched me so deeply in a moment where I needed to be touched. It felt good to be seen and recognized for my work because it often feels thankless. I wanted to extend the thank-you to all of my readers --to recognize all of the little things that we do, as parents of a child with special needs.

If you’ve been reading my blog for a while, you know there are days when I feel incredibly blessed to have been able to be able to care for my children full-time. And now, I am caring for my mother. 

The boys are technically grown, but their lives still require care and management.  I am still their advocate. Autism doesn’t go away when the last one turns 18. There are always therapies, appointments, management of benefits, services and education. 

I am working diligently to strike a balance between letting go and getting Blue to make it across that stage to graduation. Hoping that senioritis doesn’t kill one of us first. His transition into adulthood and college is bound to be something less, than a day at the beach. Woo hoo! Can't wait for that! 

Details. Details.
My life is very full of boring, little, time-consuming details. 
I’m always busy, but not always stimulated by what I am doing. 
I am often mentally drained and prone to be depressed on any given day.
I am seldom alone, but I am often lonely. 

There are days when I am bored to tears of the everyday drudgery of it all --when I would love to pay someone else to be the caregiver to everyone while I go off and have a real life. Perhaps I could travel more, do speaking engagements, focus on my own career-related projects —maybe find myself again. 

The work I do is invaluable and yet, I don’t often feel valued.
Kids say thank-you and then ask for the next thing. 
Mom says, she doesn’t want to be a burden, while asking me to do more each day. 

She doesn’t like the "substitutes" for me. She will go to my brother in California, begrudgingly. She will make the sacrifice when I go away for the weekend while sending the mixed message that she doesn’t really appreciate someone else taking up my time and reminding me, that I have a "family to take care of."  I can’t be running off partying every weekend.

Lord knows I do way too much partying during the week! 

She will accept help from others if it’s absolutely necessary, but she makes it clear that "no one does things like I do." *Huge eye roll!  

She does “see” me more than most people do. She has more time on her hands to think because she’s retired. She shows deep appreciation when she’s in the right frame of mind. 

My mother definitely sees the flips I turn for these boys. She knows that I have more patience with them than she could have EVER had. Kendal for sure would be dead by now if she was his mother. She does tell me that I’m an incredible mother. (But I could do better in the wife department.) 

There are days when I feel that God is blessing my partnership with my husband as we both carry on this work, his in Corporate America, and mine at here at home. God continues to provide. In fact, as the boys become more independent, we have even been able to travel a bit. I am still reveling in our trip to "France" this summer. I hate that we had to come back to reality, and reality has really slapped us around since we came back home. 

My everyday getaways are me sitting in my car —bathing in the sun and the hypnotic quiet.  Sometimes, in those quiet moments, the mental exhaustion catches up with me. Tears began to stream silently down my face. 

My mother has not been herself lately. I’m  not quite sure what’s going on. She can’t sleep most nights. When she hasn’t slept, I come downstairs in the morning and she has a glazed over look of exhaustion. And I know. 

Lack of deep rim sleep can cause all sorts of things to happen to your mind. 
Watching her age by the a preview of my own mortality and aging process. 
Seeing her mind gradually unravel is like watching a bad movie, in slow motion. 
I have no control over the outcome.

I realize that someday I won’t have her in my life. 
I better enjoy each moment while I have them.
Only, some of the moments are exhausting. 
I  take care of her as she took care of me when I was a child.
That doesn’t mean that I enjoy every minute of it.

I wonder what will life look like between now and then?
How many years will I have her?
How will all of this play out? 

A part of me is ready to fly. 
I thought I got my wings when Kendal moved out. 
I could finally breathe again. 
Maybe I couldn’t soar, but I could flap my wings and float around a bit.

In the quiet moments, the weight of everything becomes heavier. 
I am tired. 
No one is as aware of my reality as I am. 

I am invaluable, and yet invisible. 
No one sees everything that I do. 
No one. 
People are too engrossed in their own life's details —with their own to-do lists to be thinking about mine. 

Every once in a while my husband will say something like, “Well, I’ve been paying the bills for all of these years,” and I want to slap him into NEXT year,
“Well, I’ve just been sitting on my ass watching you do it. I haven't been doing a damned thing! Just eating bonbons and sipping champagne," is what I want to say and sometimes I do. In fact, I say much more than that.

He'll say he's kidding, but he's not kidding. He usually says something like this when he’s stressed or when money is tighter than normal. I let it go, but it stings. Days later I find it simmering and I am steaming. Maybe it's insecurity, but it makes me feel less. Even though I know in my head, that I am more. I am so much more. 

My many jobs don’t come with a paycheck or bonuses when I’ve worked extra-hard. I don’t get paid, guaranteed, vacations. There are no trophies or plaques with my name engraved. In fact, there is hardly ever a, “Wow! You are really doing a phenomenal job!” from my employers.  

As much as he loves me and I love him, he doesn’t always say what I want him to say. Lord knows I am far from perfect.  (Well, closer than he is but...)  I don’t always say the right thing. He hates my sarcasm and humor, which I use even more in times of stress, which is like...always.

We can not always be each other’s haven in the storm when we are both elements of it.

(He will hate that I wrote this about him.) 
*Sorry. Honey, I love you and you’re wonderful, but this is my blog and my these are my feelings. I’m allowed to have them, speak them and write them. It’s better than holding it in. Trust me.
I spend Wednesday mornings with Kendal. We do his laundry, go shopping, get a haircut or whatever. Only to have him call or text me afterward with one of those zingers, “I’m struggling mom. Why don’t you care?” 
 “You just don’t get it! You never listen to me! You never agree with me!” 
Keeping the boundaries between us is yet another energy drain.

I am not alone, but I am often lonely.

I have recently added actively advocating for my mother to my list of jobs. I badger and spar with her doctors to get the source of her medical issues. None of them have the vested interest that I do. They try to blow me off, while I’m the one who is here watching her fall apart.
Wrong. Answer!
I am not the one.
And so I push. I push hard. I don’t take no or “we just don’t know” for an answer.  

I am not alone, but I am lonely.

My source of energy is when I get one on one, extended time alone with my husband. That's when we really connect. The world stops and we just pay attention to one another. I just wish it was available more often. When it comes to caring for humans, getting away is not always easy.

Most of my closest friends and family are far away, so I don’t get to see them as often as I like. When I’m feeling down, I want to be with the people who know me —all of me, including the ugly parts. And yet, sometimes I am buried so deep in the muck, I don’t have the energy to reach out.

I am not alone, and yet I am lonely. 

And so I go on, smiling through the tears and loneliness of my everyday. Looking for a reason to laugh whenever possible. My sense of humor is my saving grace.

Sometimes I dance alone in the bathroom mirror, or in my car as I wait impatiently for the next time I can get away from it all.

For your viewing pleasure...

Tuesday, February 7, 2017

Invisible Jobs

Dear Autism Moms,

In case no one has told you lately, I see you and all of the invisible jobs you do. The rest of the world, and maybe even to your immediate family, may not "see" all that you do. They are so used to you to doing all of "the things" they don’t even have to think about. I see you making their lives seamless. There are no ragged stitches, thread hanging down, disasters of “what happened here?” because you make all of the details happen. 

I see you trudging to the grocery store so that the refrigerator and cupboards are filled with everyone’s special, favorite foods, while you have forgotten what you even like anymore. Except, wine. You know for sure you that you still like wine.

In fact, as long as everyone else eats and you have wine, your family gets to live to see another day. (Okay, so maybe that’s just me.) 
*So not just me. 

I see you negotiating that Individual Education Plan, year after year, after year, without being paid a dime in attorney’s fees. (Although, you may end up spending attorney's fees at some point.) All while educators are telling you that you’re being overprotective, coddling and asking for too much. Hopefully, your husband is sitting next to you during these meetings as the "voice of reason" because they all think you're being emotional. Even if he's not with you, you get it done. 

You make sure that your child’s educational needs are met while fighting against a system that would prefer to keep them inside of a well-contained box. 

I see you calling and e-mailing and meeting with teachers and administrators, fighting to make sure your child is fully educated at the highest and most inclusive level possible. You see their potential to be the most functional, independent adult and you will kick anyone’s ass who gets in the way of that. 

I see you when you have to break it down for the doctor. Despite their degrees and training, you know your child better than they do. You know what’s working and what is not working.  I don't care what the label on the medication says. You are not intimidated by some bully doctor who tries to insist that they more than you do. You are the expert when it comes to your child. (Never knew you would have to know more than a doctor when you became a mom, did you?) 

I see you doing the research to find alternatives, therapies, vitamins, supplements, and diet changes that can possibly serve as a complement to traditional therapies. You work tirelessly to do anything that could make the road to a productive life for your child a little more clear. 

I see the anguish in the tough decisions you make to give them the pharmaceutical medication, even though mixed emotions doesn’t begin to describe how you feel about it. Oh! And the pain when a medication trial goes wrong! It kills you. But you have many lives and you are so much stronger than you ever believed you could be.  

You do everything within your power if there is a minuscule chance that it will improve the quality of your child’s life. You make tough medical choices for your child despite possible stigma and the judgment from extended family who have done zero research, and yet they have strong, unsolicited opinions. 

I see you behind closed doors, comforting your child who is making threats of self-harm because he or she is miserable, depressed and tired of feeling different. They are tired of feeling alone in a crowded school. You put on the brave face, assuring them that everything will get better, even though you have no idea whether or not it actually will be. 

I know your secrets --that pain you feel when days, weeks, sometimes months go by and you have not seen your child smile or laugh. The rest of the world has no idea that a child “not smiling or laughing” is even ‘a thing.'

You will give anything just for the possibility that their eyes will light up and they will feel that innocent joy, that all children deserve to experience. 

I know that at times, your job feels thankless. When your children blame you for everything that goes wrong. You are their safe person. Your unconditional love makes them feel free to take out their frustration with you. You hear all the yelling, the cursing, the blunt, unfiltered feelings and opinions they have about everything. 

I know you feel guilty when you want to cover your ears, roll your eyes, or yell, "Enough already!" Because you've heard the same question or statement nine hundred times in a day. Not to mention the one thousand times yesterday. Here's a hint: Don't! Don't feel guilty. You're doing the best you can do, and more than the average person could.

I see you trying your best to mold them into loving, caring, people. 
I see your frustration when despite your teaching and example, they refuse to listen. They are still uniquely their own person. You can not control their every thought. You certainly can’t control the words that come out of their mouths. 

Here's a little secret, between you and me. Don’t worry. They are fighting you every step of the way, but they do hear you.  Something is seeping into to their stubborn little brains and that will become a part of the fabric of who they are as adults. They just have to come to the point where they believe that everything you taught them, was originally their idea. 

Oh! And about the judgment passed that you are “not disciplining them enough." You are blamed for their behavior. (You even blame yourself at times.) Please realize that you may be the only person on earth who sees the pain behind the behavior. You know what they are trying to communicate through the behavior. You are their mother, and you would do anything to take some of that pain away. So screw the judgment! And don't let it become a recording in your head. 

There are days, when even though you know that their frustration, yelling, screaming and yes, maybe they have even hit you. (Gasp! I know. No one is supposed to know about that. It's okay, we're all sisters here. We don't have to pretend that this never happens.)

Remember, it's not about you. That doesn’t make it any less real. It still hurts. The painful words spoken in the heat of anger and frustration can be the worst daggers to your heart. 

When they become teenagers, it may even begin to feel like an abusive relationship. You are constantly fighting a battle between your head and your heart.

You’re exhausted from lack of sleep. The wee hours of the night find you worrying about every detail of their lives. Sleep deprivation becomes the norm for you. You can hardly think straight. Making simple day to day decisions has become a major chore. 

I see you. I know how hard this journey is on your marriage. If your marriage survives, I congratulate you! You have beaten the odds. This road is rough. You only have so much energy and your high-maintenance children can drain you. Sometimes it may feel like a tug-of-war between your relationship with your husband and meeting the needs of your child. We know who wins that war most of the time. 

Even though you are married to a wonderful man, there may still be moments when you feel completely alone on this journey. No one can see your life from your unique point of view, not even your partner. There isn’t enough time in the day to communicate the worries of details about your child’s life that run through your head on a daily basis.

I am willing to bet (and I'm sure I'll get slammed for this) most husbands/fathers have no idea of how much you do and how much mental energy it takes to do it. (Maybe you can have them read them this letter, to give them an idea.) 

If your spouse is no longer in the house, well hot damn! Congratulations! You are the bomb! You are climbing a very steep mountain, and you're doing it alone. 

There are advantages and disadvantages to single-parenting an autistic child. I pray that you have a support system to give you a break.

I will say this, single-parent autism mamas...

You are strong! You are resilient. I salute you! I thank you so hard! You deserve your place in heaven that is already laid out for you. Try not to get there, sooner but later. Please, take care of yourself with intention and purpose. You may consider this letter a prescription of sorts, to show your friends and family so they will give you a day off where you can do whatever you want, even if that is just SLEEP!

As a mother, you and your child were once connected by an "Umbilical Cord". For most of us, that unique connection never goes away. We literally feel every ounce of pain that they go through.

As the mother of a child with autism, you are a part of a unique club. 
I see you. 
I thank you. 
I am you. 


Autism Dads -I don’t mean to leave you out. Of course, you serve an important and equally unique role in your child's life. I can not write from your unique perspective. Perhaps I can get Aspergers Dad (my husband) to do that here someday. 

I warn you, however, whatever he says about me --lies. All lies.  

p.s.s. Moms, 
This letter and the list of all that you do could go on to infinity. But of course, you already know that.