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 ...to tighten my abs ...to 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?” 

Umm ...no! 

“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 day.is 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.

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