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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. 

Monday, January 23, 2017

Dear Little Boy Blue,

Dear Little boy Blue,

I know you’re not little anymore.

How is it that you became a senior in high school anyway?

I mean really. Where did the time go?

You will turn eighteen in less than a month. I have real mixed emotions about this.  I know that you do to, even if you're not totally conscious of it.

You have no idea how much I miss your baby days. Not only were you sweet, and perfect, but that was also the part of motherhood that I was really good at.

I know you hate it when I talk about when you were a baby, but remembering that time is one of the greatest memories of my life. I've earned the right to talk about whatever I want. I carried you inside me for eight and a half months, until the doctor literally cut you out of my body.

I know. Gross! Right? I love grossing you out! Sorry. Not. Sorry. (I also know you HATE my sarcasm.) 

When you were a baby you were so sweet! You didn’t cry or complain much. If you did, all I had to do was take you out into the sunshine and let you roll around on a blanket. Sometimes, I would hold you in my arms and rock you gently as the sun warmed our skin, and lightened our worries. My worries then, were nothing like they are now.  I still had no idea what I was getting myself into with this whole motherhood gig.

As you began to toddle and climb, it was like an angel followed you around and protected you from the precarious situations you would put yourself in. You would climb on top of anything to get what you wanted.  Yep. You were independent even then. 

Somehow, you were always safe from harm. Despite how nervous you made me.

You still make me nervous. I worry about you all the time.

I have no doubt that you will conquer the world and any mountain you decide to climb.

It’s your emotions that I worry about most. You think and feel things so very deeply. So intensely, sometimes, that you can become overwhelmed with not only your problems, but you often carry the weight of the world on your shoulders.

You’re one of the most giving people I know. Yes. You get that from me. You are the friend to the friendless. You want to help everyone and save the world. And let’s face it, this world needs a lot of saving these days. 

You’re feeling the effects of this latest election.

You are taking on the problems of your friends.

I know you're worried about your high school career ending, and your adult life beginning.

You are swimming in a pretty deep ocean and I’m sure that it feels like you have an anchor tangled around your feet.

I want you to know that I see you.
I see your struggle.
I know that you are freaking out about so many changes coming down the pipeline of adulthood.

You have never been a fan of change.  It scares you.  Hell, it scares me!

Remember when you were leaving elementary school for middle school? That was scary, huh?

But boy, you came through that first year like a champ! You even started taking on advanced math by the end of 6th grade.

Those worries about dressing out for P.E. worked out fine. In fact, you became pretty close to one of your P.E. teachers. You even became an aid in his class in 8th grade, if I remember right.

Even eating in the cafeteria turned out okay, because that's when you finally decided to expand the list of foods you would eat.

Remember transitioning to that first year of high school? That was even worse than middle school!

You were bigger and angry, instead of just anxious. Your meltdowns spiked at an all-time high, That freaked me out, because I feel most things that you feel. It's like we're still attached by that unbilical cord.

You tried R.O.T.C. that year. You thought it would be a good fit for you. I hoped that it would be. But,  every Wednesday (which was Dress-Out day) was the worst day of the week. Your frustration would end up bleeding into the rest of your day until finally, we applied some pressure by having you drop the class after the first semester. That was a brave decision you made.

You survived that transition and by your sophomore year, you gained your footing. Remember?

You started making more friends. You became more self-aware than ever. You started your own club for other students like you, who were having a hard time finding their way, socially. We saw growth in your self-esteem.  It made you feel good to help others and to find your tribe.

You see, that’s the thing about you. You always come through. You always survive. As a matter of fact, you thrive.

In so many ways, you are light years ahead of your peers. I know that ultimately, you will be okay. But right now, watching you tread water is so hard for me. I want to help you, but I’m walking the fine line of trying to let you go and you really not wanting my help.

I know you don’t want to be dependent on me. You never have.

It’s like I’m standing behind tempered glass, watching you flail and flounder. I’m close enough to hear you scream, but unable to reach out and help you. It’s agony for a mother like me.

Transitions are tough. I’m going through one too. I mean, holy shit! I have two young adults now! 

I’m at this very strange point in motherhood where a big part of my job is over. The waking you up for school, making breakfast, packing lunches, supervising homework, breaking up fights.

You have been doing all of those things for yourself for a while now. (Well, the breaking up of fights between you and your brother, not so much.)  At least now, he doesn't live here and when you do argue, there is no bloodshed.

(Yes. I’m being dramatic. You know me. What can I say?)

I have moved past the consulting stage of motherhood where I resided for most of your adolescence. You remember, the days when you would ask for my help, and you actually, really wanted it!

Now, you come to me to talk. You ask, “What am I supposed to do? How do I fix this?”

When I give you an answer,  you spit it up, like you did when you were a baby after a feeding.  It’s like,  Anything I say, can and will be used against me in a court of law.  

So here we are. I’m stuck between this rock and a hard place and you're going through a rough spot. I’m trying to step back, allowing you to make your own decisions, but keeping my mouth shut has never been my strong suit.

You’ve seen Nana when she shouts out her two-cents from another room . She doesn't even have to be a part of the conversation! You ask me a question and she answers. Yeah. I get it from her and she gets it from my grandmother.

Like you, I’m self-aware and I’m working on my ability to shut the hell up, but it’s not easy.

I feel like I should put duct tape over my mouth, so I can’t offer advice that you don’t really want.

I have always been a fix-it kind of mom and you know that about me.

So now it’s like, “Help mom! Fix it!” and then, “NO! Don’t fix it like that! That is absolutely the wrong way to fix it! Why did I ask you in the first place!?”

You see Blue, I learned the hard way with your brother.  I can’t be the fixer during your transition to adulthood. It’s a fine tight-rope to walk and my balance ain’t so good.

So, I put supports in place for you to use, but even they can’t do the work for you. You’re the only person who walks in your shoes. You have to do the work.

We have never had to be the parents who had to take things away and ground you because you were not taking care of things at school.  You always handeled your business.

Now, when I see you burying your head in your phone because it makes you feel better temporarily, I want to scream, “Put the phone down!”

I want to take it away because I know that it’s inhibiting your progress.  It's slowing you down. It's part of the reason you can't get your homework done, or get to school on time. But, I can’t do that. You’re almost 18.  I can’t start micro-managing your life now. You have to be in control. I can’t ground a damn-near adult for infractions of self-sabotage.

So, I watch you cozy up to the end of the cliff. I’m standing here, praying that you don’t fall. knowing that you’re bigger than I am. I can’t catch you, even if I want to.

I wish I didn’t have to watch. Why can't I just cover my eyes? Or leave and come back this time next year? I actually think sometimes, if I wasn’t an audience for you, you would do better.

Your brother is doing so much better now that he has some distance from me. So there is a whole other set of guilt and blaming myself for your problems.

I know, in my head, I am not the source, but it sure feels like it sometimes.

You’ve even said to me, “It’s not about you Mom!”

Well, when you’re yelling at me because you’re frustrated, it sure does feel like it is about me.

I know for sure, we will find our way through this transition.

I will rally up the troops to support you in areas where I can’t,  and you won’t let me.

We will get through this.
It won’t be easy.
But we survive.
We face our challenges, and we move through them.

And in the end, I know you will thrive.

I love you,


Friday, January 20, 2017

Dear Obamas

Dear Obamas,

I couldn't sleep last night. I was thinking about you. I wondered how you're sleeping in The White House on your final night. You're probably ecstatic about your emancipation on this day.

As I tossed and turned in my bed, I wondered...

Have the girls tried out their new beds yet?
Where will you go on vacation?
How long will you be gone?
A month? 
A few weeks?

You deserve some rest and relaxation without the weight of the world on your shoulders.

Will Sacha get to go with you, or is she still in school?

She's a teenager now. She must love her friends and her school.  Your girls have become beautiful young women. They make me feel like their proud Auntie. I'm every girl's adopted Auntie since I only have boys.
Are you and Michelle as in love as it seems?  Your relationship looks like the real thing --authentic love, based on knowing and having mutual respect and admiration for one another. The love is palpable, like something you can pick up and spread around you like pixie dust.  I feel it when I see the way that you look at each other.

I realize it can't be all storybook and romance. Marriage is work. My husband and I have been doing it for nearly twenty-two years. It has been beautiful and inspiring for us to watch your partnership. May it continue to flourish for years to come. I have a feeling it will.

I can only imagine the mixed emotions you're all feeling today.  We are all feeling them too.

We are worried about the future, but even through that, we look to you and find solace in your reassurance that we will be alright.

This is a setback for a setup of progress. I pray that it is. I must admit, that I am really scared more than ever in my lifetime. I know, that this country has been through adversarial times before, and we have always survived as Americans.  I reassure my boys of this while trying to believe that this time, it actually will be okay.

I want to thank you from the bottom of my heart for all of your hard work, despite the challenges and opposition you faced at every turn. You were always a dignified example for us all, especially for our children.

Because of your example and all that is happening in the world, one of my sons who happens to have autism and a brilliant mind for science and math is now actually considering a career in politics or political activism. He may not run for office, but he definitely wants to do something that will have an impact on changing our society for the better.  There is obviously so much more work to do.

A funny little story...

He was in the third grade when you were running for office the first time. I remember one day I had to scold him while we were at our local swimming pool. "Stop talking about politics and go swim!" I wanted him to be worn out so he would sleep well that night.

We will continue to look to you and pray for your family. With sadness in my heart on this day. We will love you forever. You will always be my President and First Family.

Karen Wesley Weaver,
Writer, Mother, World Changer