Sunday, September 11, 2022

Conversation with God

 Dear God, Creator of the Universe, 


I appreciate you. 

You see my family out here in the struggle to make it through. 


The signs are all around us. 

We are blessed by your favor. 

Your angels appear out of nowhere. 

They watch out for us. 

They nurture and take care of us in the most unexpected ways. 


A few months ago, you brought a special angel into my son’s life. 

I know this was your doing.

There’s no other way to explain it. 


I hate the situations he has lived through for the past two years. 

Where he lives now is especially unsavory. 

It’s a stressful environment. 

It has such a negative impact on his mental health.   


One day out of nowhere, he decided to move from the house he was living in near USC into a sober living house in North Hollywood. 

I was totally surprised. 

He never told me that he applied for this place. And he tells me everything…so much more than I want him to. Even when he lies, and he does that a lot lately, he ends up telling the truth on himself days later. 

Sober house? 

He is and always has been sober.

Yes. He is in the throes of some mental health challenges. 

One might even call it a crisis.


I can only guess that he wanted a place that felt safer than the boarding house where he was living at the time. 

We now know that house near USC was heaven compared to where he lives now in Koreatown.

Of course, if you can’t get along with people, you will have trouble living anywhere where other humans dwell.

For him, the fewer humans, the better. The fewer people to fight with. 


One Sunday, a few months ago while he was living in the sober house, he left the property to attend his church in Hollywood. 

When he came back to the train station in North Hollywood near the sober house, there was one of your angels waiting for him at the train station. 

She was with a friend, a male. 

The two of them were there “evangelizing.” 

They saw Kendal with his bible getting off the train and started talking to him. 


Lord, you know that I have issues with extreme religion because of my lived experience growing up. 

The religion Mom got us involved with was extremely invasive faith. 

I know she had her reasons. She was looking for a support system after my father left. 

There were good things about it that helped mold me into the person that I am today. 

I definitely learned the bible.

We damn near had to recite it and then go door to door preaching it. I hated that! 

I realize now that men did some serious interpreting on their own while they were writing scripture. 

A lot of what they wrote is in their patriarchal favor. 

When the word was written, men made sure that women would serve and give, putting their own needs behind the needs of others.

I guess that was a sign of the times.

Well, thank you god…times have changed.


Remember when I was seventeen, and I told mom I couldn’t do the whole intense religion anymore? 

Of course, you remember.

You were there.

I ran away from that religion like I had a get-out-of-jail-free card!

I began the journey of finding my own relationship with you.  


The tenets of the faith that I was forced into felt judgmental. 

The judgment didn't feel like it came from you. 

There was a lot of “answering to the elders” and “brothers and sisters” in the congregation. 

I just couldn’t get with that. I knew that you could see my every step, even the bad ones.

You read my heart.

You gave me grace.

I didn't think you needed little minions down here on earth to help you.


I still have my faith in you and your son Jesus Christ.  

It’s the Christians who have their hidden agenda who aren’t my vibe.


Here we are more than 40 years later, and my son is being pulled into a similar kind of religion like the one I hated growing up!

He is vulnerable to the interpretation of and hidden agenda of men who may not have his best interest in mind.

He can not see when he is being told something that is not the truth.

Just like all of the children who were hurt by the priest who was supposed to be serving you.

Instead, they were serving themselves.


That angel you sent him —I had a conversation with her.

She is mature and has lived enough life to hesitate, to not become fully entrenched in this church. 

She takes issue with how man-centered the church is. 

It's not exactly her vibe. 

She seems to think it may be okay for Kendal because he is a young man.

I don't subscribe to that logic, but I know it's not up to me.

You will put him where you need him to be in his journey. 

It will not be the same as mine.

Maybe he needs the structure of it.

He told me that he wants to submit to the elders, to which I replied, "That's surprising! You have never wanted to submit to anyone in your entire life!"


Maybe everything that is happening in his life that makes me uncomfortable is all a part of your plan. 


I am imperfect and human. 

I want to understand everything, but I don't. 

I trust that you are all-knowing. 

I want to trust even more, but a part of my imperfection is trying to always be in control. 

I know that control is your job, but sometimes I be trying to help you.

I hear you whispering, “Sit down girl! I got this!”


Kendal was at that train station at the exact moment where he otherwise would never have been.

He arrived at the train station on that one Sunday and his new friend, your angel was there. 


France has been nothing but a kind, gracious, loving friend to Kendal. 

She talks to him with love and patience almost every day since they met. 

And you know, this is no easy feat. 

Im’ma be honest, it’s not easy to love or communicate with this kid.  

He talks, and talks, and talks, mostly about himself.

The interesting thing is that with France, he also talks about your word in between talking about himself. 


I asked you years ago to please send someone who would help take care of him, who he would listen to. 

I was worn out! 

You were listening. 

I know, I was in such a hurry for it to happen. 

That’s a flaw of which I am aware.

I'm working on it.


Kendal listens to France. 

He takes her advice. 

She is a mentor to him. 

The funniest thing about it is that Kendal does not typically listen to women.

Thanks to YouTube, he has this whole “toxic masculinity” vibe going on right now. 

Lord please enlighten him on that nonsense!  


Last month France showed up on his doorstep with 3 weeks’ worth of groceries. 

She and her daughter personally delivered them to him.

He was out of money. 

He had pushed the family he has in Los Angeles to their limits. 

He was cussing folks out, pounding them with his politics and rants.

And yet, by your grace, he was fed.


When would send money, he spent it on his wants.

Then he would turn around and try to play me.

Talkin’ bout, I don’t have any food.

I had to hold boundaries 

I had to say no when he asked for money. 

It was painful.


Kendal is one of the most argumentative people I’ve ever met, besides his father. 

Sometimes, I seriously wonder what you were thinking when you put me together with these dudes. 

I am a giver. 

My husband is a giver.

My son is one of the neediest, taking-all-of-the-energy people I’ve ever met in my life! 

Do you really think I have this kind of strength?! 

I’m cracking, Lord!


He was such a lonely, unhappy child.

I over-compensated, trying to single-handedly give him all of the love and happiness that he was craving. 

It was never enough.

It was never my job.


Sometimes I find it hard to understand your plan.

As his parents, we worked hard pouring into him. 

We stayed together hoping that having both parents at home would give him a better chance at happiness and success.

We fought to give him every opportunity -film camps, Christian Summer camps, swimming lessons, a supportive education.  

Yet, he continues to struggle.  


I never thought he would live in a crappy house away from home. 

He is surrounded by family, and yet, he is still alone because he shuts them out.  


Lord, I’m tired. 

This is hard to watch. 

Holding boundaries and not swooping in to save him feels impossible --and yet, I’m doing it. 

This has to be your grace.


He has all kinds of angels. 

Last month a doctor from a free clinic called to let me know what to expect from the medicine he prescribed. 

Kendal told him how worried I was and gave his consent to let the doctor talk to me. 

A doctor calling a worried mother, long distance.

That like…NEVER happens!

Overworked Social Workers and therapists have called to keep me informed beyond the call of duty. 

More miracles.  


I worked for almost a year to help him get into the California Regional Center. 

I was told it would be impossible.

It was a long, painful process. 

He was approved last month. 

He's waiting for a Case Manager. 

That's you. 

It's me too...but I probably would have given up if it weren't for your strength.

The Regional Center can give him the kind of support that he needs as an autistic adult. 

Before all of this adversity, he may not have agreed to accept the help.

He was going through the phase of thinking that he doesn't need autism support.

He's pretty close to rock bottom. 

Prayerfully soon, he will get the kind of support that he would never get here in Texas.

It would be nice if you could put a little fire under the Regional Center tho.  


Thank you for watching over him. 

And please help me to let it play out.

No swooping in, wrapping him in bubble wrap to make things more comfortable for him. 


It is through adversity that character is created. 

Through all of these challenges, this boy has shown resilience beyond my wildest dreams.  

I thank you for that.


Love always, Karen  

Monday, August 8, 2022

Dear Reader

 

I miss writing in this space. 

I love the total freedom of it. 

I’m sure your life was on hold, chomping at the bit, waiting for my next post. (insert eye roll here)

When I write here, I’m not trying to impress anyone. 

I’m not trying to build a big audience and earn money from my writing. 

Lies. I always love to earn from my writing. 

You may send all donations for all of the therapy I need to my Pay Pal

Have I told you how much money I spend on therapy just to exist in this family? 

When I started this blog, writing was therapy. 

I was just trying to survive raising two boys on the autism spectrum and one who is not.

Life continues to be challenging even though all three of them are adults (23, 26, and 34). 

Autism parenting does not have a designated empty nest date or a finish line.

My 3 Sons

So...what's new with me? 

Nothing is new. Everything is very old and tired. 

I'm constantly in search of something new. So far, I haven't had much luck.

I haven’t been writing lately (other than journaling). 

I’ve been stressing and depressing instead. It's hard to be creative when your mind is not functioning at 100 percent.

Having my 26-year-old autistic son who thinks he knows much more than he does, living away in Los Angeles has been a blessing and a curse —mostly a curse

He makes sure that he remains in the forefront of my mind, whether he’s with me or miles away. 

His life has been a roller coaster, and the ride is making me sick. I know. I shouldn't even be on the ride. I should extricate myself from his ups and downs. I am a work in progress. 

He goes from having great jobs to quitting good jobs.

From being mentally healthy to sabotaging his mental health.  

Up…down. Rinse and repeat. 

It all affects me more than it should. 

Like it or not, the yanking up and down of his life plays a part in my own mental health. 

Summer depression has been an issue with me from the time we moved to Texas. 

I hate the heat, and this year has been brutal, with temperatures over 100 degrees for months. It’s really pissing me off! 

I am working on radical acceptance of this sucky situation. 

Fighting with it is not changing it. Complaining about it is pitiful. I don't want to be pitiful. When I realize how long I’ve been complaining, I beat myself up for not doing something to change it. That’s an additional drain on my energy. 

Tolerating a distressing situation is a part of life as an adult. 

I remind myself that I have an air-conditioned home. I can choose not to leave my home during the heat of the day. 

I work outside the house in the evening or when there’s cloud cover. 

In caregiving for my mother, I end up running two households and five lives.

Dragging groceries and supplies in and out of my mother's apartment during the heat of the day is a dumb idea. 

I stopped doing it.  

Grocery shopping apps are my friend. (Except,  half the time, they say items are not available that I know damn well are available. When this happens, I send my young, vibrant son to the store instead. He can take the heat.) 

I have book dreams. I have dozens upon dozens of chapters and stories written. 

The feeling that a goal is unreachable can make me shut down. 

Being depressed and beating myself up about not writing makes me more depressed. 

Editing my own writing is a nightmare. It always has been.  It’s hard to find my own mistakes. 

Add ADHD, anxiety, and one family crisis after another makes focusing on writing pretty damn difficult. 

Building a writing career adds the pressure to be perfect. 

Perfection can make me shut down. 

He’s Married Now

I never wrote much here about our eldest son Adrian. He is not on the spectrum. 

He is a college graduate and served in the United States Army Reserve. 

I didn’t carry him in my uterus, but I raised him. He was just about 5 years old when I met his father. 

Now, he is a  grown-ass man with a son, a wife, and a mortgage. 

It’s so nice to pull up to his house and see his success. (Even if his home is larger than ours and has the floor plan of my dreams).

No shade. I’m not hatin’. 

We want our children to be more successful than we are, right?  

Granma status: 

Adrian and his wife, Jasmine, made me a grandmother!!! 

It is one of the most prestigious, pure joy-inducing jobs ever! 

Cayden is two-years-old. 

I am completely in love. 

He is my sun.  He's so pure and full of joy. 

When Adrian and Jasmine had their wedding recently, the best part was taking care of my grandson while they were on their honeymoon! 

23 and Me: 

My twenty-three-year-old son is still living with us. 

He is finding his way in the world. 

He has been having what he called an “existential crisis.” 

He’s such a deep thinker. 

When the world slowed down, he found time to focus on the anxiety beneath the surface (kinda like the rest of us).  

We all had time to think and examine the meaning and purpose of our lives in the last two years. 

Leave it to my kid to teach me new things. 

When I was twenty-three, I had no idea what an existential crisis was.  

I was just swimming upstream, doing all of the things life expected of me.  

I didn’t question everything the way he does. 

Side note -When I was 23, I was madly in love with love. I was caught up in romance. There was no time or interest in reflecting on the meaning of life.

These days both of us treat our mental health like it’s a full-time gig. Therapy, writing, reading, podcasts, and more therapy.  

Therapy is one of our biggest household expenses. 

He volunteers at a mental health support community called the Austin Club House.

During his time there, he has developed even more empathy for those with mental health struggles, including the homeless.  

In fact, he is leaning toward becoming a Peer Mental Health Advocate. 

Recently, he answered the call for submissions to a mental health writing contest sponsored by the Hogg Foundation He won a monetary prize and is being published! 

Maybe, I will follow in his footsteps. 

I’m in a hurry for everything to happen for him. 

He’s in a hurry for nothing. 

His steps are measured and well thought out.   

Note to self, 

Life is not a race Karen. This is his journey, not yours. It’s not your job to hurry things along. You have no control here. 

It’s still like watching paint dry for a person like me who wants everything now! Patience used to be my strong suit. I don't know what happened. 

The pain in my headache

If you’re wondering what oppositional defiance and autism look like in adulthood, it is a picture of my twenty-six-year-old son in the DSM-5.  

He moved to Los Angeles in 2020 to pursue his dreams and escape us. He didn’t want our help financially (except he totally does, only on his terms). Accepting help from us would mean we might have something to say about his decisions. 

He moved to live with my niece and her son. 

However, he burned that bridge pretty quickly.  

My siblings and family also live in L.A. 

He has burned bridges with most of them. 

My family is loving and supportive in the same ways that I am. 

Turns out cussing people out and hanging up the phone on them is not acceptable.

Coming into someone’s home, not speaking, and then storming out because you don’t want to wear a mask around an older, immune-compromised adult is also unacceptable. 

The blessing is California (a blue state) has more services and support.  

He has the best Social Worker in the world (me…for free).  

He does not appreciate or take full advantage of what I’ve tried to put in place to support him. 

When an adult acts like he doesn’t want help, these agencies will not beat your door down to give it to you.  

It kills his brother and me to watch him blow off support when so many here in Texas are desperately seeking help and can't find it. We know so many young adults who have no one to help them navigate an impossible mental health system. And yet, he has my support and more and could not care less. 

Whatever I am for, he is against. 

I’m not Christian enough. So why should he listen to anything I say? 

He continues to be the person in my life who commands the most energy.

And yet, it’s uncanny that so far, he turns out to be the opposite of me. 

I am love and peace. 

He is fight or flight. 

I avoid conflict.  

He lives for it. 

I tell him I don’t want to control his life. I just want to see him happy. 

He tells me, “Life isn’t about being happy.” 

It’s like he tries to make life as hard as can be. 

Ask me for money. No. Problem. 

Take advantage of the support that would help him not waste money. No. Thank you. 

Recently he started attending an extremely conservative church.

When I asked him, “Why the change from the church in Hollywood that you enjoyed?”  

He said, “That was one of those feel-good churches where they don’t preach the hard truth!” (Fire and damnation)

He is antagonizing and frustrating.  

He is the main ingredient of my anxiety, worry, and heart palpitations.

I love him deeply —probably too deep for my own good. 

Sometimes, I don’t know how I pull the love out of thin air for him, but I do. 

Honestly, I don’t want to feel him deeply anymore.  I’m so tired of carrying the extra weight.

I can tell you how hard it is to love him with no shame because more than one thing can be true at the same time. 

There are so many moms in the world who are feeling horrible about how they can have feelings of animosity toward their adult child who causes them so much stress. It’s okay to feel whatever you feel. Love and hostility can co-exist. Love ideally wins.  

As my friend and fellow writer Carrie Cariello often says, “Autism is heartbreak by a thousand papercuts.”  

I continue to work through burnout, which affects my energy reserves. 

It affects my level of patience and ability to be a pleasant human.

Sometimes, I just have nothing left to give. 

I want time just to be focused on myself after years of neglect. 

Menopause only adds to my moodiness and emotionality. 

My marriage is on life-support. 

However, we finally found a black therapist who is culturally sensitive. 

When we told her our story, her jaw dropped a few times. 

But hopefully, she’s a miracle worker. 


Thank you, Dear Reader!

You can read my son's published poem here The Hogg Foundation  

You can also find my stories here on KarenWesleyWrites.medium.com

 

 


Tuesday, April 12, 2022

I Have a New Home, Come on Over

Dear Loyal Reader, 

Have you missed me here on this blog? Some of you have messaged me."What the heck, Karen? Did you stop writing on Confessions?" 

I'm still here. I'm just trying to change my focus.

Recently, I have been writing on KarenWesleyWrites.medium.com  Medium is a digital reading platform where writers like myself have the opportunity to connect with readers from around the globe. It's also a writing platform where writers earn money for their work. 

I hope that you will join me there. You can create an account by signing in with your social media account or email address. It's free to read a certain amount of stories per month. I also post a free "friend link" on my Instagram, Facebook Page, and TwitterOf course, you already follow me on social media, right? 

On "Medium," you have the opportunity to engage and build a relationship with writers like me, who you love, by "clapping" on our articles, writing thoughtful responses, and highlighting your favorite passages. If you comment or ask a question, I will reply. You can also sign up to have my posts come directly to your email address. 

If you enjoy reading great stories from writers from all over the world and want to support the art of writing, please consider signing up for a Medium membership. When you use my membership link, most of your monthly membership ($5.00) will directly support my writing. 

Membership fees allow Medium to pay writers. You have unlimited access to all of the good stuff from other writers in your subjects of interest. I mean, Barack Obama writes there. Yep! Me and Barack. 

Thousands of writers have been writing in this digital format and earning a living (or at least a cup of coffee) with their work for years. 

I started writing on "Medium" because want to change the focus of my writing since the boys are now adults. They have their own stories to tell. I want to diversify and write about mental health, wellness, self-care, and perhaps a few opinion humor and pieces.

I also hoped to change the focus of my life. They say what you focus on grows. I don't know who "they" is, but... I thought maybe if I stopped writing so much about parenting autism, the issues associated with it would disappate in my life. Imagine my disappointment when that didn't happen.  

The transition to adulthood is the hardest part of parenting autism. At least, that has been my experience. My boys are 23 and 26. I am exhausted. I have zero control over anything. I'm just a passenger with a first-class seat to watch them move their lives sideways, backward, and occasionally forward. I can not control their action or inaction, even if it impacts my stress level. 

Autism continues to impact my life no matter what I write about. I will continue to be a voice for autism parents who walk this path. I have been writing this blog for nearly 12 years. I started writing to create autism awareness. I wanted to paint a picture of day-to-day life raising two teenage boys on the autism spectrum. They also happen to be black, growing up in a primarily white suburb of Austin, Texas. 

From the start of this blog, my intention was not one of financial gain. I have earned pennies from my writing in this format. I was too stressed out, raising my sons and keeping them alive. There was no energy to consider monetizing my writing. I couldn't imagine adding the stress of writing deadlines, editors, and publishers' demands to my chaotic life. Although, my close friends and husband strongly encouraged me to do so. 

People who are not writers think you're not a "real writer" unless you publish a book. I am published all over the internet. (Google Karen Wesley Weaver) I am one of the Top Ten Autism Blogs in 2020 by Everyday Health.com My essays have been published in two books. I haven't made my first million dollars, so that doesn't count, right? 

Other people can not measure my payoff, success as a writer, a mother, or anything else I chose to do with my life. 

At the beginning of this blog, the boys and I agreed that if our story helped one person feel less alone in this world, or allowed one person to be inspired to keep going, then it is worth it to share our story. 

I write for my life and sanity. I come here when I have nowhere else to turn. This blog was a source of therapy when I didn't have a therapist. The writing is raw, with no sugarcoating or making it perfect and pretty. I'm trying to do that now on Medium, and let me tell you, my brain doesn't work so good anymore. Prolonged stress has changed my brain. Still, I try. 

I just celebrated my 57th birthday. I'm in menopause. Hormonal imbalance finds me crying at the drop of a hat. I'm tired. My mental health is in the toilet. It's hard to know what is caused by what and what to do to make things better. 

My biggest job in autism parenting has become holding boundaries while trying to move my sons towards independence. Of course, I have zero control over this outcome. The only person I can control is me. That has always been true. It just slaps me in the face now. 

All we can do is build ourselves up with self-compassion, self-love, and self-care. I will be writing about it along the way. Maybe someday, I can pay for all of the therapy we need with my writing earnings. Ha! 

I appreciate you for always supporting my work. 

Love, 

Karen 

You can also find all of my links, including one for a direct donation to support my work on My Linktree



Friday, June 11, 2021

Unhappy Anniversary

I can’t do it. I can’t pretend that our 27th Wedding Anniversary was actually happy. I have a "thing" with people who post the “fabulous life” on social media as if life is all roses. This phenomena that has taken over our lives can lead to some of us feeling more depressed than ever. The reality of most of our lives has plenty of thorns, weeds and dirt.  


Yes. I posted this pic on social media of the two of us having our moment --dinner at our favorite restaurant. 

Yes. We were both smiling pleasantly. (I was acting, mostly. I haven't felt like smiling in weeks). 

*Get it together Karen! You're at our favorite place. This is fine dining. The food will be delicious! We can even afford this...sorta. We made it! Married 27 freakin years! Smile. Dammit! Be happy. 

My husband, Alan always has that dazzling smile. He’s so good-looking and such a charmer. His public persona is impeccable. Everyone says, “He’s the nicest guy they’ve ever met." He has a loving, giving, open heart. I love that about him.

Of course, there are two sides to every story and every Gemini. 

I know all truths are that are hidden beyond my husband's smile.  He struggles through this life like any black man does. He is always proving to the world that he isn’t your average black man. He's none of the stereotypes. He’s not your average man.period.  

How many men do you know who actually stay in a marriage for 27-years with the stress of providing for and raising three boys, two on the autism spectrum? My husband is human, flawed, with moods, inner struggles and insecurities just like the rest of us, despite his charm and dazzling smile. 

He’s a better actor than I am though. I am beyond the whole “acting happy” stage of life. I have very few fake smiles or f*@%s to give these days. 

We had a happy “moment” for our anniversary. I’m thankful for that. The food at Eddy V’s was beyond delicious. We shared a perfect crabcake, a Ceasar salad (which always brings back a memory of my dad. He always made the real deal Caesar with anchovies, from scratch.) Halibut topped with avocado, crab and Panko bread crumbs. 

My French 77 cocktail/s (with vodka instead of gin) helped me  smile and enjoy the moment. His perfect Old-Fashion cocktails helped him relax.  

When we got home and tried to wind down, the anniversary was not genuinely happy. The truth is, we have mental health issues in our home. Mental health or lack thereof,  can steal the glory of the actual “happy” like a shameless thief. It can ruin the party in the blink of an eye.

After this year of CoVid, pandemic, quarantine, social isolation, work-at-home, college-at-home, unemployment, and racial tension, my mental health is in the toilet, swimming in shit. Such a pretty metaphor, isn't it? 

I will not speak in detail of my adult children, but their mental health, or lack there of, impacts my mental health. It has been a shit-show of a year. I am holding on to life by my fingernails. 

The other day I wrote a journal entry that would scare most people if you read it, depending on how you interpret it. I cursed everybody out! I called out all of complete bullshit that has been effecting my life for years now. I have been living the stress for 4 other adults, problem solving, feeling their emotions, (empath) listening like a therapist who lives with her clients. It feels like they continue to ask me for more, and even if they don't ask, I give it. My letter was saying goodbye to that b.s. 

I don't want to end my life.  What I want is to actually start living it fully...in peace.  I’m mature enough to realize that life has really awful moments,  but you get up the next day and try to make it better than yesterday. You grow. You stretch. You say goodbye to what no longer serves you. You work to create the life you want, even though you’re exhausted. You don’t give up. 

You keep working through the pain and along the way, you encourage others to keep going; to take care of ourselves; to forgive ourselves for the places where we fall short. 

Back in high-school, I remember my English teacher called me "Florence Nightingale." He told me to sit down and stop helping everybody. “No one asked you to do that,” he said. 

You didn’t need to ask for my help, for me to give it to you. This kind of thinking can lead to a woman’s undoing. *Burnout and cumulative stress can end in physical and mental illness. Stress can lodge itself in your body as heart disease, high blood pressure and cancer. 

As a caregiver, mother to adults on the autism spectrum, and wife of 27-years, I work continuously  to create and keep boundaries; to find mercy for myself. I practice self-love, self-compassion and self-care.  We keep practicing until we get it right.    

Some people will take your last breath if you’re willing to give it to them. My adult children will probably stand over my grave and yell, “but Mom I need…” 

I work hard everyday to say yes to myself. It’s not easy. 

Will you come on the journey with me? 

*"Burnout -The Secret to Unlocking the Stress Cycle"  (Emily Nagoski, Ph.D. Amelia Nagoski, AMA,  2020) 

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Saturday, March 27, 2021

Aspie From Maine

My friends on social media are real.  Recently, I lost one of  them. I met Kate Goldfield through this blog. Kate was a fellow blogger, the author of "Aspie from Maine". She wrote about life in her twenties, living with Aspergers.   She was one of my earliest readers when I started writing 12 years-ago. 

The boys were teens at the time. I was mostly at my wits end and would write like this was a diary of confessions. As my dad would say,  I would tell "the natural truth." Unedited. Especially, in the beginning. I had no idea what I was doing really.

Kate would comment and help me with insight into what the boys may have been feeling and experiencing from the perspective of someone living with Aspergers. We became Facebook friends. We were also in several autism support groups together. Support groups on Facebook can be a lifeline for the autism community. It can be one of the only ways we connect with people who really understand the journey we are living. 

Kate was always supportive of my blog which made me think,  maybe I'm doing something right. In fact, if you visit Kate's blog , I am first on the list of blogs that she likes. (Yes. That makes me feel like I was seen.) 

Kate was very active in the online Autism Community both with parents and other adults on the spectrum.  I think she would be delighted to know how many of us were touched by her life and devastated by her death.

Last weekend, she was having difficulty breathing due to asthma. We all knew because like me, she posted about everything! She was wrestling with the decision to go to the E.R. or not. Many of her online friends were encouraging her to go.  But she had a lot of anxiety about the medical system. It had failed her so many times. Over the years, there were countless doctors who did not believe her.  They would dismiss her symptoms and send her away with no answers. Which of course, made her feel worse. There were so many medications prescribed that did not address her needs, or didn’t agree with her chemical sensitivities. It was a major source of frustration. 

The family made a statement on her Facebook page on Monday, March 22nd, 2021.  

“Kate finally went to the ER today and while she was there she went into cardiac arrest and died. The doctors don’t know what caused her to crash so quickly and are going to recommend that the medical examiner does an autopsy.” 

Wait what! WTF? --my initial reaction. 

Personally, I believe there were many contributing factors to her cause of death. One was was a medical and mental health system that failed her. Case Workers who said she wasn’t bad off enough to receive help. A government that doesn’t prioritize marginalized communities and adults with disabilities. A local support system that wasn't enough for her many challenges. 

*Disclaimer (This is the picture Kate painted of her life through her posts and private messages. It is not my intention to blame any one party.)

The family’s statement made reference to her "looking so peaceful." As if that might comfort those of us reading it. In anger I thought, Hell yeah she looked peaceful! She was finally resting after an exhaustive struggle!  

I was sad, hurt, a little angry and afraid. Her early death made me think of my sons who are high-functioning, young adults on the spectrum. High functioning can be such a illusory term. Meaning well-spoken; often highly intelligent. Society often doesn’t see, or can disregard how much their skills of daily living can be affected, and how many challenges they face.

A young adult who is “high-functioning” may be able to get the highest of S.A.T. scores, and yet have tremendous difficulty managing day to day life as a college student. All of the deadlines, and projects must be time-managed in order to be completed on time. For the first time they may also be managing their daily lives without the support of their family. 

Another "high-functioning" young adult may function well in a work environment where there is a distinct routine or work that requires hyper-focus. And yet, they may find it impossible to navigate things like, living on their own, budgeting, and paying bills on time. Because of limited social communication, they can be highly vulnerable and easily taken advantage of.

(I personally know several “highly functioning” adults who have been scammed out of large amounts of money.)

We have a family friend (lets call him Michael). He is 21 years-old. He just completed an Associates degree program. He is struggling, caught between a rock and hard place, desperately wanting independence as most young-adults do. Anxiety makes him hesitant to move into the career he studied for. So he remains in an entry-level position on a job that he doesn't like. He doesn’t have all of the skills for independent living. He’s impacted by depression,  fighting hardest against the people who love him most.  He feels a lifetime worth of anger, disappointment, restricted freedom (from his perspective) and a lot of social rejection. It can take a long time for someone on the spectrum to get over the nightmare of high school. Sometimes,  his perception can make his life feel even more difficult.  It is nevertheless, his reality. 

My own 25-year-old son on the autism spectrum can be “a lot” to deal with. He talks and asks questions incessantly. He used to blow up my phone every-time he was angry or upset about something. He complains about so many things. I think constantly thinking of something to be angry about has got to be exhausting. He has a flair for drama, which I have come to understand and can read. But, I worry. 

"Will he be believed by others in his life when something is terribly wrong?" 

He is the epitome of the boy who cried wolf. 

As he matures, his quest for constant attention has gotten better. Still he wants to be seen and heard. He doesn't seem to care whether it's positive or negative attention. Attention is like oxygen to him. As his mother, I try to give him the benefit of the doubt. I try to listen, but even with that, it is a real journey of setting and keeping boundaries for the sake of  my own mental health.  And I think, I am one of the most patient people on earth! (At least I used to be before they fried my nerves.) 

What will happen to him if I’m no longer here? Will the rest of the world have the time and patience to deal with his difficult personality?  A question many autism parents ask. 

I watched my very real, Facebook friend struggle this past year. She would write posts daily, practically screaming to be heard. The isolation of quarantine in 2020 was difficult for many of us. Those of us with mental health issues were heavily impacted by the level of isolation. 

Kate messaged me a month ago.  She asked, "Will it be okay if I PM and we could have a convo cus I feel like I could learn a lot from you? But if not that is okay you probably have your hands full."  

I had to level with her, ”I’m not always in a good place myself and I don't have all of the answers. But I will listen and respond when I have the capacity to give you a thoughtful reply.” 

At the very least I wanted let her know that she was both seen and heard, despite her extensive list of troubles.   

I told my 22 year-old son on the day that she passed, that people like Kate have been a large part of my purpose in this life.  Through writing our story, I met Kate and many young-adults on the spectrum who were struggling through the teen years and young adulthood. Some of them had parents who from their perspective, were not supportive. They write to me when they are facing a challenge, or just want to be heard.  It's one of the things I'm most proud of in this life. 

I hope and pray that someone reading this will reach out to a person who is struggling, no matter how difficult their personalities may be. You can have boundaries and still support someone with autism or mental health issues. See them. Hear them. 

I see you Kate. I will never forget you. 💔😢