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Friday, May 4, 2018

Reclaiming My Time

Going on vacation is a wonderful thing. Anytime you have the privilege of getting away from day to day life to see something different in the world should be a cause for celebration and hopefully, an opportunity for relaxation.

In my life, however there are a lot of ironies. Things that other people celebrate and enjoy can be complicated for me. In fact, many things that average families would normally celebrate, can be an additional source of stress and anxiety for an autism family. If you are a parent of a child with any kind of special needs, you know exactly what I’m talking about. 

Over the years of raising these children, travel has been a dual between fun and overwhelming. There are so many details to put into place before I can think about going anywhere with or without my children. I also have to add my mom to the mix since she has lived with us for the past eight years.

Before I can travel, I have to make sure that everyone will be taken care of while I’m away. This means arranging for most of the things that I do for them, to be done by someone else. All bases must be covered. Oh yes! Let's not forget about Harry, our dog. I don't like to put him in a kennel. He is used to having someone to sit next to. He's a lap dog. And, Yes. I am a spoiler of all of my children.

I have anxiety from years in this autism life. My anxiety is real and at this point and time, requires medication to keep me functioning without taking someone's head off. The thing about authentic anxiety is that it doesn't have to make any sense to anyone else. It's real inside my head and in my physical reaction to stress. I have worried about every single trip that I have planned since my children were born. 

Will the plane crash? 
I can’t die. They need me! 
If I am leaving them at home... did I take care of every last detail before I left?
Did I write all of the operating instructions for whoever is taking over? 
Did I remember the special foods, the wine for my mom, the projects for school that need to be turned in on time? 
Did I fill prescriptions? 
Did I pack meds? 
Does anyone know what to do if I die?
Yes. I have a will. But still…the details of everyday life. The things that only I know. Most of the time, their father didn't even know the name of their teachers, or their doctors. 

Is there any wonder when my husband or my friends say, “hey let’s take a trip,” I hesitate?

I hesitated when my husband said let’s go to Italy in 2007. I was dying to go to Italy, but what would we do with the kids for ten days? I had never been away from them for that long. How would I get along with my husband for ten days? Would we kill each other? Would we still be married when we came back home?

When we planned our trip to France in the summer of 2016, I freaked out. There was a terrorist attack right before we left in Nice. We were going to Nice! Again, what if I die?

I finally settled on, I'm going. I may die on this trip, but at least I will die having seen France.  I have just about gotten these boys through to adulthood. I’ve already done a lifetime of work. If it's my time, so be it. 

A couple of weeks ago my husband planned a trip to Las Vegas with my best friend and her husband for my birthday. Spectacular, right? Vegas is one big adult playground. He planned everything perfectly. He bought tickets to the best shows, “Michael Jackson One.” He even bought awesome seats to see Justin Timberlake in concert! We had gorgeous adult dinners at gourmet restaurants and stayed in lovely accommodations. 

It's a good thing he planned it because I never would have done it. I would find every excuse not to go. Why? Because of anxiety —that’s why. Like I said, there’s nothing about anxiety that has to make any sense. In my case, it sort of does, because over the years so many things have hit the fan when we traveled. 

Hubby works for a global IT Corporation so he goes to Las Vegas every year for his sales conference. Sometimes, he goes twice a year if there is a Regional Meeting there. The first time I joined him in Vegas for one of his business trips, Blue was in the 6th grade. He was still freaked out by thunderstorms back then.

I left on a Friday morning. The sun was shining brightly I felt so happy and free to be getting on an airplane alone. I made arrangements for Blue to spend part of the weekend with one of his best friends. I can't remember where Kendal was, but he wasn't home. My mom was at the house with Blue. When his friend's mom came to pick him up that Friday afternoon, he would not leave the house because of his anxiety. In fact, he ended up spending the entire weekend hiding out in the bathroom because there was a threat of storms. 

How free and easy breezy can one feel knowing that your child is hunkered down, camping in the bathroom with pillows, blankets, music and a fan to drown out the sound possible storms?

This is just one example of the things that play on a highlight reel in my head every time someone talks to me about traveling. My body  goes into fight or flight tension from all of the years when things have gone wrong in my absence

I usually work through the anxiety. I go on the trip despite the anxiety, but no one can tell me not to freak out. It’s just like when you tell someone who’s having a meltdown to just “calm down.” Yeah. That goes over perfectly. I am working on getting over some of this with my therapist. Hoever, it takes time. I have a lot of crap to work through. 

Our most recent trip was to Washington D.C. We took the entire family (my mom, Blue, me and Alan). Kendal just moved to San Antonio to live with his older brother. Preparing for his move was a whole other source of stress that went in conjunction with the planning of this trip. I won’t even go into the details of that.   

Our family trip was a total of five days. We rented a lovely AirBnB, two-bedroom apartment so that my mother would have accessible accommodations. An apartment, as opposed to hotel rooms, would mean a lot of family togetherness. There would be no quick and easy escapes.

We were also meeting my siblings in D.C. to go to the Smithsonian African American History Museum. No pressure, right?
My peeps

There are extra details to traveling with my mother. Her arthritic knees keep her from being as mobile as she used to be. Wheelchairs were arranged at the airports to get her on, and between, flights. Sitting all together in a row on the plane where I was smushed in-between my mother and my husband was lots of fun for a woman in peri-menopause.

I reserved a scooter with a medical equipment company in D.C. because of the extensive walking that would be required at the museum. The night before we left, she informs me that she refuses to even try the scooter. It was too late for cancellations, so I ended up paying full-price for the motor-scooter rental, while we got an old crappy wheelchair that was hard as hell to push her around in. 

Overall, it was a great trip. The museum was powerful and I'm so glad we were all able to see it. 

Per my therapist's suggestion, I decided to take one day to get some time to myself. Self-care is pertinent when you need to have extra patience. Years ago, I would never have considered gifting time to myself. I would be too worried about what others would think. I didn’t want to disappoint anyone. Ever. I would just do all of the things whether I wanted to or not.

My mother and my husband were not happy when I told them that I would not accompany them to church and to visit with some of his family. I told them that it wasn’t up for discussion. I know what I need. No one will speak up for me, except me. 

I am “reclaiming my time!” Like Auntie Maxine Waters! The people who were used to me not having boundaries will find themselves disappointed at times. However, they will benefit from the happier person I am after refilling my cup. 

I was ecstatic as soon as they all walked out the door. 

Here’s the video of my favorite moment of our adventure. I highly recommend taking time for yourself whenever possible.


May self-care and self-love carry you through your stressful situations.

Love,

Karen

Tuesday, April 10, 2018

Self-Love 101


Today was therapy day for me, also known as “Me Day.” Therapy is usually followed by lunch by myself, reflection and writing. This one of the self-care tools that I have tried to implement consistently over the past few years. It is one of few things I look forward to every week. That is unless someone somehow plans an appointment during my time. Nothing upsets me more than missing my Me-Day. 

Therapy is a full-time job for me.
I go to therapy.
I  drive other people to therapy.
I wait outside of therapist's offices, doctor’s offices, possible employers offices, colleges, beauty salons, you name it. I drive to it.
I’m am the designated personal driver for all of the grown-ass people in my family. 
I actually go to therapy to help me cope with driving people to therapy for no pay, and no tips, while I put my own dreams and personal goals on hold. The worst thing? Half the time my passengers don’t smell so good. At least soccer moms have a good excuse for their passengers not smelling so good. 

Oh! Yes. Also pestering young-adults about the art of showering is also a big part of my job. Who wouldn’t need therapy with a job like this? The reward is ...um. I don't think there is a reward.  

Recently, I have been attempting to as Auntie and Senator Maxine Waters says, “Reclaiming my time!” -in an effort of self-preservation and self-care. I am working hard at maintaining the boundaries surrounding the time that I need to take care of me …to do the things that make my heart smile and feed my soul. This means there are more times when I have to say, “No. I can’t do that today. I have a prior engagement.” Even if that prior engagement is just me sitting at a coffee house or who am I kidding?  A bar --working on a writing project. 

Not consistently taking care of myself made me become this angry, cranky, resentful person. I was feeling like a non-entity ...like I have no right to my own wants and needs. People will try to make you feel like you're being selfish when you start putting yourself first. As if doing things for your personal enjoyment is wrong because after all, you owe them your life. And by people, I mean family. Everyone wants what they want -now. Yet, not one of them pays me one red cent.

My friend Becca of lovebecca.com  wrote a 30-day Self-Love challenge on her website. She also posted it on her Facebook and Instagram every day during the Month of March. 

When I opened Facebook and read an entry I felt like she was speaking directly to me. She wrote about simple things that we as women should be doing to take care of ourselves. Some of the things she mentioned, I have been ignoring for months. 

One day Becca wrote about making your regular doctor appointments. I was like …Wow! Hello. I’m overdue by several months for my annual exam. How does she know this?
She wrote about getting a regular form of exercise and drinking enough water (not including the ice cubes in my vodka cocktail.) I know she had me in mind when she wrote that one.
She wrote about having regular dates with yourself, doing something simple that you love.
She reminded me to spend more time doing something fun and creative.
In other words, we need to find our own personal joy. That doesn't have to mean spending a lot of money. It really just means spending time on the things that make us feel lighter, even if that's just taking a nap!  

I did not complete the 30-day challenge in full. However, I am pleased to report that I have become more conscientious about improving in the self-care department. As a result, I am happier than I have been in a very long time. My anxiety is down. I’m less angry and resentful. I don’t want to run away and change my identity —well, most days I don’t. It’s work-in-progress. 

Of course, when I started pushing back saying no and making plans for myself, this limited my availability to do for others. My bosses don't like it so much. They have come to believe that they are the priority in my life. This includes my two young-adult sons (who do not drive) and my 78-year-old-mother, who lives with me. She thinks since the boys are grown now, it’s HER turn. Nope! Sorry, Mom. It’s MY turn. 

I’ve been working hard to keep boundaries for my time. I leave the house to write more regularly so that my thoughts are not interrupted. During those times I don’t answer my phone. I also don’t answer my phone if I’m out at a social event. If I’m having dinner with friends, I put my phone away, out of sight so that I am engaged and present with my friends whom I see so seldom. This doesn't mean I don't have dozens of missed calls when I finally do check.  Last week I came out of a spa treatment and had 13 missed calls from the 22-year-old. Talk about a way to kill a buzz.   

I have become like the panic-button or the easy-button for my kids. I am not amused. I want them to get to the point, where they stop, think and try to solve their own problems before they resort to calling me. Sometimes, they just want someone to scream at because they’re frustrated. All of that is putting me on anxiety overload. I cringe when I see their names on my caller ID. It's not the school calling anymore. It's them. Did I mention, I keep my phone on silent most of the time?  The ring makes my heart-rate go up. 

Now, I tell them ahead of time, I will not be available between this time and that time. DO NOT CALL ME! My phone will not be accessible. Because -boundaries. Hello. If they call anyway, I don’t answer. I give it time so that hopefully they can figure things out on their own. 

I started painting again. Sundays have become my painting day. I told my mom, “The only thing cooking in my kitchen on Sundays is acrylic paint!”

A friend of mine turned me on to this website www.acrylicpouring.com. I downloaded their “Getting Started” manual and have been watching “how to” videos on You-Tube. So far, I’m not that great at it, but I’m having fun playing with color on canvas. I plan to keep at it until I get better.

One of my First Pours 
I haven’t reached all of my self-care goals, but I’m definitely headed in a better direction. I just hit my 53rd birthday. And the day before I was feeling so tired, I felt like I knew what it's like to be dead.

As my youngest child crosses over into adulthood, he seems to want to walk backward trying to escape it.  Meanwhile, I am running in the opposite direction towards reclaiming myself and my time. The two scenarios make life complicated.

The 22-year-old son is working on relocating to another city not too far away, but just far enough that it may help him grow to the next level. Meanwhile, the transition process is extra work and extra stress for both of us, which makes my need for self-care and proper rest even more important.  

I'm not saying any of this is easy or that it changes your life overnight. My life is always a work-in-progress.

I did finally make it to my new doctor. She didn't seem to be nearly as concerned about my imminent death as I am. But she did do some bloodwork. So we will see. These traditional medical doctors never seem to believe it's an issue when I ask them about a hormonal imbalance,  which means my next step is to find a naturopathic doctor.

I hope you will join me on the path towards self-love and self-care. Don't be like me and wait until everyone else is taken care of because guess what? They will NEVER be!

What are you doing just for you lately?
Remember, you are the most person to love.

Check out my friend Love Becca’s 30-day Self-Love challenge for some ideas.

BTW -do you follow me on Instagram and Twitter? I am kwesleywrites on both. I'm always afraid that someday Facebook will die especially after recent activity. 

Tuesday, March 6, 2018

Autism is Real


Autism is real. It ebbs and flows. It may evolve, but it doesn’t go away no matter the age or level of maturity. Thankfully, we continue to make progress. But then one-day autism shows up and slaps you in the face as if to say,  I'm still here bitches!

Kendal was home Friday morning for a few hours before work.  Autism was on and poppin’ —like, Hello! Don't forget about me!  He was home because his phone was broken and of course, he wanted it fixed or replaced like, NOW! Dad and I are apparently, the fixers of all things.

His anxiety is also high because there are some big changes coming his way. His transition program is ending soon and there is a huge possibility that he will be moving out of the group home. I am hesitant to talk about this (in detail) until it actually happens. There are countless loose ends to be tied up before it becomes a reality. I am excited, nervous and apprehensive, all at once.

His fixation right now is his future. He’s thinking big picture. Where will I end up in five to ten years? Of course, the possibilities are endless.  His brain is working overtime thinking about each and every possible “what if?”

Now as fixations go, this is a pretty good one to have. At least it’s not girls or obsessing about making his body even more perfect than it is.

However, by the time he left my house on Friday afternoon, I couldn’t drive him to work. The constant talking, the repeating, the demands ...my nerves were shot. I literally could not think straight. I was willing to pay for an Uber rather than listen to the same dialog within the confines of my car.

Since his phone is on its last leg and it's difficult to use, when he got off work that evening, he called to ask me to either pick him up or help him coordinate an Uber ride. He wanted to go to a social event with his church. I had had enough of him for the day so again, I opt for Uber.

He calls me from the business phone at work to say he’s ready. I call the Uber.  The Uber is waiting for him when he gets off. But somehow, he doesn't get outside in time and the driver cancels the ride. After a couple of minutes, they think you’re a no-show, so they charge you a five-dollar cancellation fee and they leave.

I'm watching this whole transaction happen on my phone, but I can't get in touch with him because again, dead phone.

He gets outside of work and can’t find the Uber. Instead of going back inside of work to call me again, he wanders down the parking lot and ends up at Arby's.  Not really knowing what to do finally, he asks a stranger can he please call me from her phone. She calls me for him. “Mam, I have your son Kendal here and he’s lost.” This is nearly 30 minutes later. I’m thinking, lost? How did he get lost?" The boy usually Uberss all over town. The difference here is that he doesn't have a working phone.

The whole time I’m sitting here knowing that the Uber has taken off. I’m wondering what happened to him? I’m thinking, maybe he caught a ride with someone from work, but he can’t call me because the phone is dead. NO. That was not the case. He was wandering around for thirty minutes trying to figure out what to do. Autism.

Long story short, I end up having to stop what I’m doing (eating dinner and about to pull out my paints and canvas) to go pick him up because he’s pretty much panicking. By the time I get there, he is livid! It’s all my fault, of course! He’s actually just totally frustrated with the situation and anxious to get to his event, but there must be someone to blame. As always, I get that prize. I'm thinking, I should be the one who is yelling. I should be at home drinking wine! 

I get him to calm down. I tell him my car will not move if there is yelling inside of it --a lesson I've learned over the years. So he gives me the address to the event.  Off we go. I'm driving blindly. Well, I have the navigation, but I really have no idea where I'm going, which makes me nervous.

Once we make the turn off the main road, I can barely see.  It’s a dark, winding canyon,  and I mean pitch black. The navigation lady is talking.  Kendal is talking. I’m like, “Dude! do you want me to find this place or not? Shut up!” I’m highly frustrated at this point. Remember, I should be at home drinking wine and painting. Instead, I’m trying to hear the navigation lady and watch out for wild deer who are probably roaming the hills.

We finally arrive at the gated community and he says, “There’s a code. Do you have the code?”
“How in the hell would I have the code!? I don’t know these people. Don’t you have the code?”
“No," he says and stares at me blankly, like --now what are we going to do?

I’m thinking,  it’s a really good thing that he’s not in an Uber. Imagine, he gets the driver all the way up into this community and he has no access to the gate. He would be angry and disappointed. They would probably have to drive away and he would not make it to the event. The Uber driver would probably think he's nuts.

So there we sit at the gate. Hmm. What to do? A car pulls behind me. I make a quick u-turn to move out of the way. When I see the driver going in, I floor the gas and follow them before the gate closes.  I may or may not have burned rubber.

Kendal’s in the back seat. “What are you doing Mom? Are we going to get arrested? You just broke into this neighborhood,” he keeps asking over and over as I continue to try to listen to the navigation lady.

“No! We’re not going to get arrested! Now be quiet so I can find this damn place!” At least I hope we're not going to get arrested. I start looking around and realize this neighborhood is exclusive, fancy, obviously designed for the very wealthy. The houses are huge, all stucco, with Spanish tile roofs. The streets have these little turnabouts like they have in France. There are even cobblestones in some parts of the street. They have their own special street lights, which are so dim that I can hardly see where I'm going. We are a bit out of place. I just burned rubber and snuck in here. He has an address but I doubt he knows the name of the homeowner. All he knows for sure is that “someone from church” is hosting the event.

If my nerves had not been so fried, this would have been hilarious. Me driving in the dark, trying to find a house that I’ve never been to. The neighborhood is not well lit, at all. I can barely see the names of the streets. I can’t make out any addresses. It’s not your normal, every day, Austin subdivision.

In fact, I’m thinking —I had no idea this kind of affluence existed here in Austin. This sub-division is so exclusive, I bet there are no black people that live in here. Black people probably don’t even know this place exists. Hell! I didn’t know until tonight. They've been hiding an entire neighborhood up in these hills and poor people know nothing about. Are we going to get arrested? Did I damage any property when I burned rubber on that U-turn? 

Finally, we find the house, and not because the address was obvious, but because Kendal kind of recognized the house. Turns out he had been here once before. Wow! Really? Thanks for telling me. You’ve been here before, but you didn’t think to write down the code to get into the gate? Yeah. Autism. 

He gets out of the car. I am praying that this is actually the house and that he’s not walking into a total stranger’s home. I could see the headline, “Black man, carrying a large gym-bag is shot entering white folks home in exclusive neighborhood in Austin.” 

Once he gets inside, I take a deep breath and exhale. Then I notice that he left their front gate open because of course, and there is a little dog roaming the front yard. I get out of my car and closed the gate. Yeah. Autism.

As I’m driving home, I’m thinking to myself, how did I survive years of this and his behavior was even worse? In his teen years, there would have been no cooling down of the yelling when I was trying to drive. I would have had to pull-over and threaten to take him home.

He has matured a lot since then. However, autism and ADHD and are still real and I am a brain-fried survivor.
Me at the beach in California
-my sacred place 


Sunday, February 25, 2018

The Whispers

I confess. I’ve been holding back on my writing here in this medium. The worst thing you can do as a writer is caring what the perception will be if you write your truth. Okay, maybe not the worst. The worst is not writing at all, but it’s certainly not good to worry about the outcome or what goes on inside someone else's head when they are reading your words.

When writing you have to stay true to your purpose. Keep writing (every day the experts say). I write as often as I  can. I write first and foremost for my sanity. I try to keep in mind exactly who I am writing for. I don’t mean the lurkers who are making their own assessments of what they think they are reading in-between the lines. The people I want to touch by my writing, my true audience, are mostly women like me. Women who are tired, who are struggling, who sometimes feel alone in a crowded room, or in a home full of responsibility, children, a husband and perhaps even parent they are caring for. 

Some of us can't write our truth, we don't have the time or the energy. Many of us get enough judgment from our extended family, as it is because of our children's behavior and our family's ignorance about autism. Some of us may not see our reality reflected in society. There are a lot of women out there who project as if they have it all together, especially on social media. Look at my perfect life! Chile, please! I know you got lots of dirt hidden behind that smile.

The women I write for may not be able to express their feelings aloud but they are feeling all of the feelings, wanting to scream, curse, cry or laugh at themselves. Maybe you are doing all of these things but you still somehow feel alone. Perhaps you secretly feel like your feelings are wrong. Well, fuck that! You have a right to feel your truth. I'm just the silly girl, that actually writes mine on the internet. 

Most of my writing has been about the boys. They are a major focal point and a big part of my purpose in life. However, I feel like I’m about to burst from all of the feelings that have been swimming around in my head and throughout my body over the past few weeks about myself. What about me? I have my own thoughts, feelings, yearnings. With Kendal gone and the house quieter, I have more time to think about myself. What do I want? How do I feel? I am tired of being the beck and call girl for these boys. They think I'm just sitting idle, waiting to do the next thing for them.

Kendal, my 22-year-old had the nerve to say one day while sitting on the couch in my bedroom, "Why are you writing and not paying attention to me? Your writing is just a hobby. It's not like you're getting paid or anything." Mother f*#%er what I decide to do with my time is MY choice and MY business! They think I owe them my undivided attention whenever they want it. Um! No. You're a grown-ass-man. That ship has sailed. 

I can only tell my therapist so much in the less than one hour we have together each week. I feel like I should live with her part-time. I don’t see my friends often and somehow I stopped having telephone conversations after so many years of never having enough peace or quiet to talk on the phone. And if I did have time, I was usually all talked out from the incessant talking, arguing and debating from my children.

The family that I see more often than I would like does not understand my innermost thoughts and feelings, nor do they care to. They are all too busy with their own agenda. And more importantly, they are too busy with what they want and need from me.

My husband is a source of refuge for me. He is my rock. But of course, he is highly focused on his job, and he's a dude. We are very different in our thinking and mindset. He gets me more than most people, but he doesn't totally get me. He thinks I'm cooky. I am cooky but...whatever. 

I am going through some kind of change-of-life, midlife, soon to be empty nest, but not-soon-enough-thing. I’m probably going through some kind of peri-menopausal, hormonal mumbo-jumbo as well. I am somewhere in the mix of letting go of my supposed-to-be young-adult children. Yet, because of their autism, they still want me to do much more for them than I want to do. 

I read a quote the other day that said, “I never fit inside a box; no matter how big it is.” I was like damn, that’s it. I am inside of a box that I don’t fit in anymore, that is if I ever did. I allowed myself to be put into this box. I’ve been in it a long time. Parts of this box are cozy, comfortable and familiar. Why leave? But another part of me is dying to get out. Only, a couple of problems… 
  1. I don’t know where exactly to begin. 
  2. I still have obligations inside the box, and those shackles hold me back from my next destination. 
What is that syndrome called when you start getting comfortable with being held captive? Stockholm Syndrome —It usually happens when your capturer has agreed to let you live instead of killing you. You start to appreciate and sympathize with them. You don't even try to escape anymore. Well, my capturers have not threatened to kill me, not intentionally anyway, but they nearly have.  

My current situation of being everyone’s everything, having little left over for my own personal happiness and fulfillment, as much as I may hate it, it is familiar. It’s what I know. It's who I've been. It’s what I’ve done for a long time. I am used to being the on-call therapist, fire- extinguisher, problem solver.

Leaving this uncomfortable comfort-zone and moving forward into the next phase of life is scary. What if I'm not good at anything else? What if most of my brain cells have already died? For a person with anxiety, it can feel overwhelming —insurmountable. 

Being a wife, mother, caregiver, and autism advocate is a part of my destiny. However life has been whispering for a while now, there is something more for me to do. Part of that is really living for myself and enjoying life, doing things that I want to do on a more regular basis. The longer I sit inside of this box, this house, my life in Texas, putting MY life behind everyone else's, the more stir crazy I will be.

I will have no one else to blame except for myself.

Who holds the biggest stake in my life? I do. Change is therefore up to me.

I went through a pretty huge summer depression. Now I’m going through a too many cloudy, cold, gray days, winter sadness. I take medication for anxiety and depression, but medication only does so much. There is still enough sadness that lingers, which tells me there is more I need to do improve my own mental health.

There are changes that I need to make. The underlying issues of being unfulfilled, wanting more, wanting an escape from this box will keep nudging me until I do something different. It’s hideous to believe that life will improve if I keep doing the same thing. 

One of those things is as simple as regular self-care: 
  • Make myself leave the house even on those cloudy, gray days to go for a walk or to yoga. I need regular exercise 
  • Make my OWN doctor's appointments. Right now I am overdue for my annual exam. My excuse? My doctor moved to California over a year ago. I should have gone with her. 
  • Indulge in things that I enjoy more regularly -like painting, visiting with friends, being more social and traveling.  
  • Figure out my true purpose. Who do I want to help in the next phase of my life?  
I know I’m supposed to put myself on the list first. I’ll do it for a while and then shit will hit the fan with one of the boys and I get off track. I am so used to life coming at me hard from different directions. I have forgotten how to take care of myself.

A few years ago I went to hear Oprah speak at a women’s empowerment event. I remember her saying "When there is something that you need to change in your life, the whispers come at you first. Listen to the whispers. If you don’t do anything about it, they get louder like a little thump on the head or a pebble. If you still don’t listen, it gets even louder until it’s like a brick upside your head, which is a crisis. If you still are not listening, the brick becomes a disaster."

I haven’t been paying attention. I’ve been ignoring the whispers. Sometimes I listen and try to find a way to pacify them for a while. It’s like putting on a band-aid when I need stitches. 

I have loved taking care of my children. Technically, one of them is still somewhat of a child. He is eighteen, but in many ways, he is actually a few years younger. He has always been the most independent one. So for him to suddenly start walking backward has caught me off guard. I was not expecting this. Part of me may even be feeling a little resentful that he still needs me so much. He yanks my chain. He manipulates me and I let him. He pulls me into areas of his life, where I have no business. He pulls me in and then rejects me in the next moment. I know, I have to draw the line in permanent marker so that he can’t come back and erase it. I had to do the same with his brother and as a result, we have progress. 

The whispers have turned into pebbles, thumps upside the head. The next thing will be the bricks and I really don’t like pain. So I better start listening. 

I hope that you, my tribe, will learn to make self-care a priority. Pay attention to the whispers that are telling you it’s time for you to do something different. No one cares about your happiness and fulfillment as much as you do. 

Tuesday, February 13, 2018

What A Difference Adult Transition Makes

Here I sit in this dreary conference room in the Special Education office at our high school. This is still considered Kendal’s home campus, although he hasn't attended classes here in four years. He meets his Adult Transition team at various places in the community. However, all official meetings are still held here. 

This is his final annual goal planning meeting for the Adult Transition program. We are planning his exit and graduation.  I’m somewhere between here and existing in a state of disbelief.

Who is this young man sitting across from me sporting a beard --all calm, cool and collected? 

Every once in a while he flashes that million-dollar-smile. I don’t think he knows it’s worth a million. If he did, surely he would use it more often.  

I can't believe this is my son. My babies are all grown-ass-men. Kendal is almost an entirely different person from the teenager who attended high school here. 

In his high school days, he was a bundle of depression, anxiety, and defiance. I was seriously worried about his future. Self-motivation was non-existent. Getting him to school each day was like pulling teeth. I reached the point where I didn't bother with trying to get him to do homework at home. It took so much energy just for him to make it through the entire school day. 

When he roamed the hallways of this high school, he wore what seemed like a permanent scowl on his face to go along with matching clinched fists.  He was a big, angry-looking black dude, in a sea of mostly white and Hispanic students. Yet, he wondered why everyone wasn’t lining up to be his friend. 

How is this kid going to survive in the world as a black man with so much anger? The world isn’t going to care about his diagnosis. When he's out in the world, officers won’t stop to understand his autism before they shoot.

He had absolutely zero respect for authority. One day fed up with his high school existence, he walked into the Vice Principal’s office and proceeded to curse him out. Who does that? Let me tell you, that was a fun phone call to receive. I can still feel my heart fluttering, head throbbing and my stomach turning, just thinking about it.

What a difference a few years and an Adult Transition program makes? He’s a different person now —one hundred pounds lighter, employed and more confident than I ever could have imagined. 

I’m so glad I didn’t snub this program like I wanted to at first. When Kendal was in elementary school, he had been an A student. I believed that all of that intelligence was buried underneath his negative attitude.  I thought that his depression and hyper-focus on how much he didn't fit in, was mostly what was holding him back. I thought he just needed to get out of the high school environment. I rationalized. He would be fine once he got out into the real world. It turns out that it wasn't that simple.

I never turned down any services offered to him because of my pride or because I didn’t want him to have a specific label. It was an internal battle for sure, but I always wanted him to have all of the help possible. I wanted him operating with every advantage, more than I wanted the dream of him being the perfect child that had always imagined having.  

So many kids sit in classrooms with no diagnosis, with parents who don’t know or care to get them the help that they need. They can’t figure out why they can’t focus. They are wondering why they can't the get the work done like the rest of their peers? Why are they always in trouble? 

There are also so many parents who are trying to get special education services, and they are being denied —being told they’re their child is not disabled enough for an I.E.P.

We were lucky. My boys were never in danger of not getting what they needed. I was THAT mom with the big mouth, who just wouldn’t go away. It was my job to make sure that they were understood. I made sure that both their gifts and their deficits were clearly visible and attended to. 

It all paid off in the end. Every phone call from teachers and staff. Every meeting and conference. Every time I sat down with an administrator who tried to discipline them for things that were a direct result of their disability. Every headache and every accelerated heart-rate when the school’s name was on my caller I.D.  It felt like a lifetime of work, and I'm still exhausted from it, but here we are today. 

This is it. The finally.  It doesn’t seem that long ago that we were meeting to get services for pre-school.  Kendal was 3-years-old —a toddler with a speech delay. He talked plenty —most people just didn’t think it was English that he was speaking. Instinctively, I always knew what he meant and what he wanted. We are still connected by that umbilical cord. Words were not necessary for our communication.  

During his high-school-years, we sat right here in this room in countless meetings where he was utterly oppositional and combative.  One time he told us his biggest goal was to sit in the cafeteria during lunch so that he could to go talk to the cheerleaders and popular girls. Another time his goal was to be popular. The popular kids wanted nothing to do with him. Who cares if he made them uncomfortable? That was their hang up, as far as he was concerned. 
Here in this dingy room with supposed-to-be-white walls, and no artwork, I came up with the creative solutions to help him feel less isolated and alone in those tortuous, high-school days. Everyone in the room, Special Education staff, teachers and administrators supposedly had his best interest at heart. However, no one in that room represented him and his feelings one-hundred percent the way I did as his mother and advocate. I literally felt every inch of his pain and frustration. His pain was my headache and my heartache. 
The administration and some of the staff seemed more concerned with protecting the regular students who roamed the halls freely. My son, made those students feel uncomfortable.  He looked angry because he felt left out. No one except for Kendal and me was thinking about exactly how all of the pain, isolation, and rejection of his high school experience was affecting him and his self-worth. 

I look back on my high-school years with fondness. It was one of the best times of my life. I had friends, first loves, dances and football games. It hurt me that for my son high- school was mostly a traumatic experience. There were no dances or football games. Even the Friday afternoon pep rallies were an exercise in sensory overstimulation that caused meltdowns and negative behaviors. 

I remember watching him swim upstream when everyone else was heading down. He looked so lost and alone in those corridors. I would come in for a meeting, but before leaving I would stalk him from a distance. I wanted to see for myself what was going on with him and sometimes it was painful to watch. 

I sat here in this conference room when I decided to have him volunteer in the class for those more severely affected by autism and other disabilities.  He could be helpful to them. That would be good for his self-esteem. Those kids loved to see him coming. It was an opportunity for him to feel valued in an environment where he otherwise felt like he wasn’t good enough.

The others in the room said, “We want to keep Kendal safe.” Safe from acting out with other students. Safe from making threats of self-harm would make people feel uncomfortable. At the same time, they were isolating him and taking away his rights to walk the hallways like every other student. We implemented my idea, and it helped him tremendously.

Here we are today setting up the final plans for him to exit Adult-Transition (otherwise known as Eighteen Plus Services) and move forward to the next phase of his life. The program has helped him stay employed for the past 4 years. He went from working 10-15 hours per week to now working 35 hours on two different jobs. He is never late for work and seldom misses a day.

He has worked on budgeting, shopping, cooking, creating his own social and recreational routines. Some of the things he has accomplished I don’t think I would have EVER been able to get him to do on my own. If the idea came from me, it was probably not a good one. 

He was willing to listen to the team of professionals that he worked with. He may have argued with them, but he eventually heard what they were saying and moved forward.  Whenever anyone introduces any new idea to Kendal, he has to vehemently disagree with it first. That good old oppositional defiance disorder is always at work. 

For these professionals, I know it wasn’t always fun to work with him. I am forever thankful for the strength and tenacity of the team that he worked with. Ms. G. his Transition teacher for these past two years has the heart of an angel. She always treated him with dignity and respect, which is why he knew she was on his side, even when he was acting like a complete jerk. He would not be nearly as far down the road to independence without her. 

Another vital piece of the puzzle for him was Person Centered Planning. The process was excruciating for years. The Transition Coordinator for our district (another Mrs. G.) facilitated his meetings for almost 8 years altogether. The best piece of this process was putting tons of celebrations down on paper with things he accomplished each month. It also helped him focus on creating and achieving goals. 

People who deal with depression have a hard time seeing their own progress, but it was always there in black and white. There was no denying his forward movement no matter how incremental. 

There were countless others in the village that led him to success, such as Ms. Carol, his Occupational Therapist. His Pastor was once a part of his team, Mr. Mc D. the teacher he volunteered for in high school. There were so many angels on his PCP and Transition team over the years. All had faith that he could do good things, even when I was not so sure. 

I have a special friend that we made through this blog. Paul has Aspergers himself. He once wrote an incredible guest post here. Paul always told me that the boys were going to do great things someday. I was so immersed in the muck, I didn’t understand why he thought that other than the fact that he used to be such a handful to his parents. Now he is a successful husband, father and business owner. I thought of Paul as we sat in this final meeting. Paul -I get it now.

The picture I had painted of Kendal's future was bleak. I wasn’t sure of anything.  What I did know was that I wasn’t giving up and I wouldn’t allow him to give up either. 

On May 16, 2018,  he will officially graduate from the Adult Transition Program and finally receive his very hard-earned high school diploma. 

At the end of the meeting, Kendal asked if he could go visit a few of his favorite teachers before we left the building. They were all happy to see him. They are amazed by his transformation, both the weight loss and his smooth, relaxed demeanor. He gave them a glimpse of his million-dollar-smile —something that they seldom got to see when he was a student here. 

He also wanted to pay a visit to his favorite Vice-Principal (you know…the one he cursed out years ago). They shook hands, hugged and smiled as men. Kendal looked so proud of himself. He knows he has come a long way. 

He still calls me every day with questions and concerns about the next steps of his life. The anxiety abides within him, but it doesn’t keep him from moving forward. 

More big changes are coming. I’m afraid to put them down on paper until things actually happen.
I won’t bore you with all of my worries about his next chapter.  What I know for sure, is that he will continue to grow despite my fears. 

Kendal and the professionals on his team who made it all happen...

Thursday, February 1, 2018

Leave me Alone, but Not Like That

My dear son, 

Our relationship is pretty excruciating these days. You hate to see me coming. I might nag you to do something that’s not on your agenda of nothingness. You're chillin. I know. 

I can’t do enough for you and yet you say, “All you want is to be left alone.”  

Well, all I want is to leave you alone. I’m ready get my life back, if I even know what that looks like anymore. Maybe I would like to have a career that grants me some kind of validation that I am more than just a good mom. I’m constantly fighting the voices in this world, including the one inside my head that says, “Raising children is not a career. You’re not an independent woman you don’t bring home a paycheck.” 

Most of those voices have no idea how much work and energy is involved in raising special needs children, taking care of a parent with a husband who travels and is buried in work all the time. We live in a state where we have no family. Just maintaining our mental health is a piece of work within itself. I know the voices are wrong, but they're still there and I fight them all-of-the-time. 

I have given you and your brothers 24 years of my life. For as long as you have been alive, I have put you first. 

(By the way, I told your brother and now I’m telling you, don’t think for one minute that whoever you decide to marry, will do half of the things I’ve done for you or your children. Most women will not give up so much to be everything to their kids.) I was crazy to do it! 

I set the standard pretty high, which is why you all still expect so much from me. You and Kendal still think I’m your beck and call girl --at your service 24 hours a day. Well ...I quit that gig a few years ago but apparently, y'all didn't get the memo. 

You want to be left alone, but when I leave you alone, you call and text me and the texts are not pleasant.  A few weeks ago, I’m sitting in a cafe having a glass of wine, writing. The wine was especially delicious probably because it was paired with freedom from doing things for other people. I was alone and in heaven until my blood pressure shot up after the unpleasantries of your messages. 

You have said things like you don’t appreciate me “being selfish” and leaving. What? So I have no right to do anything for myself? 

You are a legal adult. You love to be independent and disappear by yourself to go write, draw and do homework in coffee-houses all over town --to go hang out with your friends. Well, guess what? I’m human. I need to do things for myself too. I need my writing time. I need the occasional night out or a weekend with my girlfriends. I need to travel —to go see my friends and family. Most of them don’t live here. You’re not the only one who gets lonely. I have feelings too. 

I need to maintain my marriage and date my husband. Have you noticed that many marriages don’t last as long as ours has? We have had some strenuous times while raising you boys, but we stayed together. Mostly because we were too busy with one crisis to another, to get a divorce. 

It is time for me to leave you more often. Just because I leave you for a few days or a few hours does not mean that I am abandoning you. Ultimately, I will always be here for you, just not every second of every day.  

I understand you’re going through a lot of transitions right now. You’re adjusting to adulthood and community college. You’re sad. You miss your friends. 

Traditionally, this is where parents and children part ways. The young adult goes away to college, to the military, a gap year in Europe or wherever the hell you can go to escape the bondage of having parents. Most soon to be 19 year-olds are out in the world, bungling their way through life and making mistakes without the careful observation of their parents. 

Unfortunately, that typical scenario is not where we find ourselves. Thanks to the wonderful challenges that autism brings, we are a little behind the curve. You’re not ready to move away from us completely.  There are still some skills of independent life that you need to acquire.

Being the advanced student that you are, unfortunately means that we were not focused as heavily on independent living skills while you were in high school. Sure, we worked on cooking, chores, laundry and basic self-care. But we didn’t so much work on budgeting and time management. Frankly, I don’t think the high school fully prepared you with the executive functioning skills that you would need for college. 

I get it. You don’t want to be told what to do. My mom lives with me. I don’t want her telling me what to do. As much as you don’t want to be told, I don’t want to be the one telling you. I want you to handle your business on your own. I want you to be out in the world making your own decisions. I want you to be able to decide when you need to get up for class and when you should start planning and executing that paper for your English class. 

I want you to plan your meals and when decide when you want to eat out. I want you to manage your money. It would be nice if you had your own money. It would be nice if you had a schedule for your laundry and for the rest of your life. I want NOTHING to do with any of that. Yet, I am consistently pulled into the intricacies of your life when you are not handling everything. Like when you wait until the last minute to work on a paper for school.  When the shit hits the fan, and you're panicking, I become fully enthralled in the fallout as if everything is my fault.  

School is 100% your responsibility, as it always has been. When you go to work, you can't call me to solve your issues there. You will have to find other resources. College is practice for that. You have to collaborate with professors, counselors and other students to come up with solutions.  

We live cooperatively as a family. You still need me in a lot of ways (mostly for money and rides). We have to consider each other when our lives are still intertwined. This in a nutshell is our conflict. It’s big. It’s messy and there are no quick and easy answers. We are stumbling all over each other with our righteous resentment for the roles we find ourselves in. 

What you may not realize is that I’m going through a transition too. I’m in a period of  letting go of the job I’ve been doing for your entire life.  

Taking care of you, being your second voice, your advocate, your cook, your maid and your life manager has been my job. We are transitioning away from that, with you taking on more responsibility for yourself.

The thing is, I know you can do this! You’ve always been an independent, conscientious student. Now we just need to meld that together with some adult-living skills --blending the responsibilities of your daily life with school. For some reason the thought of that seems to be freaking you out. But I know you can do this!  

In order for you to grow into the man that I know you will be, I have to let go of some things that have been a part of me for a very long time. I have to let go of control. I can’t walk in your shoes. I can’t cocoon you from the ugly, adult world. You are half-way in while your other foot is still in the door of the home you share your parents. 

I’m straddling the line between treating you like an adult when in some ways you are still a like a child. You still have needs to be met. You are struggling wanting independence not being quite ready to let go of your childhood.  I have been your lifelong caretaker. 

You have actually said, “I hate this dynamic.” I can totally understand that. I’m not in love with it either. I don’t want to be micromanaging your life any more than you want to be micromanaged. We’re in a transition. We are both learning and we are both letting go. 

This transition stage is a mixed bag of nuts (heavy on the nuts) for both of us.  

We will get through this. I hope that we can try to be compassionate and patient for what each of us is going through. We have to work together to treat each other with dignity and respect. Otherwise, someone is going to get hurt …and it ain’t me! 

When we get it all figured out, you will be an awesome, adult, human being who will conquer the world. The mountain feels insurmountable now, but the only way to climb it is one step at a time. I’m with you. I'm behind you …just from a little more of a distance. 

I would be doing you a disservice if I didn’t push you to leave the safety of this nest. I love you too much to treat you like a baby. I have to treat you like the man that you want to be.  A man who is out contributing to the world —changing things for the better. I can’t wait to see you soar. 

Love, 


Mom 

This is Us
Me always joking around and you so serious.

Wednesday, January 17, 2018

Finding A Girlfriend

“Why aren’t girls attracted to me?”

“Why can’t I find a girlfriend?”

There isn’t a week, probably a day, that goes by when one or both of the boys don't ask me these questions.

What I hear when they ask is...

What’s wrong with me? 
Why don't people accept me?
I just want love and affection like everybody else. 
I’m a nice guy. 
Why does it look so easy for everyone else?
I'm lonely.
Am I ever going to be happy? 

The truth is finding love isn’t easy for everyone else. It only looks easy from the outside looking in.  Especially, on social media where the boys are constantly looking in one form or another.

Kendal, my 22-year-old son was smart enough to shut down his Facebook recently. I don’t know if it will last, but I’m happy and proud that he made that decision for himself. Every day being overwhelmed by images of the things you feel like you don't have in your life, is a trigger for depression.

Blue also shut down his Facebook, but he's still on Twitter and Instagram.

For Blue, it's not just about the girls. It's about friends. It's transition from high school to community college. It's friends who have disappeared. Support systems lost. Teachers he talked to every day. There were so many teachers who supported him. He talked with them before, during and after school. Teachers always understood him more than most peers. He is beyond his age in maturity and the things in the world that he thinks and wants to talk about. He thrives on being social.

In reality, relationships are so fucking complicated.  Love can be the best thing ever.  It can also be awful when it falls apart. It can make you feel high and then turn around and make you completely crazy, unravel you, make you more nuts than you already are. (I'm totally not talking about myself here.)  If you don’t have the maturity to handle the emotions, love can unglue you.

My dear sons, I know you think you want love, but maybe you don’t. You have enough issues figuring out your transition into adult life. Women will make you lose focus. You will feel good for a while and then you could end up feeling god-awful. Like underneath the table, hiding from the world, awful.  Like going into the mental-hospital-awful. Or possibly sending your mother-to-the-mental-health-hospital-awful.

You really can’t afford to completely fall apart. I don't think I have the strength to watch you fall apart, again. So maybe it’s better you find love when you’re ready to handle it. You don’t want to hear that. No one wants to hear that. It's like saying to a diabetic, "No candy, cookies or cake for you!

Kendal has had a couple of mostly benign relationships. He gets upset when things don’t work out, but he has definitely learned from each experience. He has actually been the one to break it off when he realizes that he isn't getting what he wants out of the relationship anymore. He doesn’t fall apart completely, only slightly.  Of course, that could be attributed to the fact that he hasn’t really been deeply in love. He's has had deep, infatuation with... Oh-my-God! I actually have a girlfriend! I am finally validated in this world! 

At this point, he is confused because he has worked so hard on losing weight (100 pounds plus) and has only had one brief relationship since then. He doesn’t realize that a good body and a nice smile do not “entitle” you to a relationship. The world owes him nothing in the love department. Plenty of people are alone for years and maybe, they’re better off.

He has worked so hard on sculpting his body. He has a killer smile (when he uses it). I'm sure he wonders, why aren’t the girls just flocking to me?

If I must say so myself, Kendal is good looking and he knows it.
Blue is also quite handsome, but he has no idea.
Kendal is aware that most men in our family typically have no problem finding women (i.e. his older brother --quite the ladies man).
He's just as handsome, so why is he alone?
It a valid thought. There is no answer though. That doesn't keep him from looking for the magic formula.
Why can't someone tell him?
More specifically, why can't I tell him?
I'm supposed to have all of the answers to life's questions.

I don't think either of them realizes that there are many complexities to human relationships. I don’t think I have even touched the surface of teaching them these things. Is that even my job? I don't really know.

I don’t know if it’s even possible for me to teach either of them anything anymore. Most of their lessons will be learned through real-life experience. Mommy doesn’t have the magic touch anymore. In fact, I probably have the antithesis of magic —more like the jinx, the trigger, the person-who-makes- everything-worse (according to them). Yet they won't leave me alone.

Why can't I find a girlfriend? Here are some of my stock answers...

  • Stop looking. Love will find you when the time is right. They HATE this one, but it doesn't stop them from asking me over and over again. 
  • There's nothing wrong with you. There is something wrong with the wrong girls you have approached. 
  • You will find the right girl and when you do, you won’t have to turn flips or do tricks. You won't have to pretend to be someone else to get her. 
  • You won’t have to play games. She will love and appreciate the unique human-being that you are.
  • Work on yourself! Fill up your life. Move forward. Make progress. Make friends --just friends. They may introduce you to someone. 
  • Serve others in some capacity. Volunteer! You never know who you'll meet.
  • Get involved in groups of people who share mutual interests. Have you been to Meetup.com? Is that still a thing?   
  • Dating advice on You-Tube and social media is complete bullshit. Don’t believe the hype. They don't even hear me when I say this. 
  • What applies to “most people” doesn’t apply to you. You are different --good different. You are authentic. You say what you mean. You are looking for genuine love. You probably hope for sex, but you will be totally upfront about that. And please wear a condom. In fact, wear two! 
  • Always smell good. Always be prepared to meet the love of your life. They think this one is absolutely ridiculous. 
I just hope whoever you eventually find, she will take care of your heart. I know you better take care of hers or you’ll have to answer to me.

I pray that if there is fallout, it won’t be so god-awful that you can't handle it (or I can't handle it).

In the meantime, go to college.  Keep working. Build a career. Figure out who you are. Fill up your life with friends and people who give you mutual respect.

I promise you, the rest of the world is not as shitty as high school.  It’s a tough place, but just keep swimming. You will find your tribe.

Your mother is just like Oprah. All of this I know for sure.
(Actually, that's complete bullshit, but I hope so anyway.)