End the Spectrum

In the world of autism, I’ve found there to be a myriad of parent types. There are the parents who just want their child to be accepted as they are. There are parents who want their child to be healed. There are parents who refuse to acknowledge their child’s problems. There are parents who are great at intervention and advocating.

I could keep going.

A little while ago, there was a video of a mom that went viral. In the video, she tearfully talks about the struggles she faces with her son who has autism. She also talks about her worries and her grief. It was very moving and I loved her authenticity.

Not everyone loved it though.

In one of the support groups, she was bashed for not accepting her child as he is. This broke my heart, because her grief was ignored.

I think the hardest part of having a child with autism is carrying the grief. Unfortunately, talking about this grief can be labeled taboo. Shouldn’t you love your child just as they are – no strings attached?

I do love my son just as he is.

The problem is that the way he is inhibits his life severely. Imagine never being able to talk. Imagine never hearing your child say “I love you”. Can you? Can you even imagine that? Can you imagine watching your child bite himself until he bleeds?

I recognize that Evan’s autism is more severe than others. For many, autism is a social awkwardness that just needs acceptance. For a few, autism is a nightmare. Calling it a spectrum does not  do the disparity justice. In fact, it destroys true advocacy for these children as a whole, because they all need something different.

Someone once said to me that if their child had autism that it wouldn’t change a thing. My response?

Smile. Nod.

Say bad words in my head.

Autism changed everything. It limits us in every area of our life – spiritually, physically, financially. I grieve for these things.

I do not love my son less.

Stop stifling my grief with judgements about my child’s acceptance. No one accepts him or sees his reality more than I do.

Candidly,

Ash

There is a Part of Me that Wants to Survive

We recently got a new car.

I should say a “new-to-us” car.

It’s a 1999 Honda CRV complete with peeling paint, slugglish A/C and in desperate need of rotors. It also intermittently doesn’t start.

But other than that…

We like it.

It’s been a long summer without a car. So even though its not my top choice of vehicles, its also not my last. I’m thankful. I mean, when you go without a car for seven months, then you sort of naturally become a recluse. It will be nice to, you know…. Go SOMEWHERE!

School starts Monday and with the end of the summer came a need for a babysitter. We really hired her because I thought I was losing my mind and felt I could NOT do one more day of summer.

My first act of freedom was to visit the dump (because this is what a person does as their first act of freedom?!?!). You see, our lovely acre of land is located so far from civilization that no trash pickup companies will service us. It’s {not} great. In my eagerness to be rid of the nastiness residing on our front porch, I forgot my cellphone.

Of course, I didn’t remember this until my car wouldn’t start at the dump.

Stranded. At the dump. Of all places.

It was smelly, hot and I didn’t have anything to do but wait the 1.5 hours it would take my husband to return his state vehicle and then drive to me.

So I waited and waited some more. And there was a great deal of time to think.

I remembered my therapist offering up the suggestion that when faced with bad circumstances, we can ask ourselves, “What can I learn from this?”

And so I closed my eyes in the sweltering heat and  prayed, “What can I learn from this, God?”

I’ll be honest. “Don’t buy sh*t cars!” was the first thing that came to mind.

I’m pretty sure that wasn’t God’s answer.

Opening my eyes again, I looked at the words scrawled on a bright red sign.

Take the time or pay the fine.

A cantankerous snort may have emerged from me at this point. I knew the sign was my answer, but I didn’t really like it.

You see, I didn’t take the time to grab my cellphone or leave the babysitter with Jesse’s number. I also didn’t take the time to fix a problem with the vehicle when I certainly should have.

Yes, I could go on and on about all of the procrastination that occurs in my daily life, but it felt like there was more to the message on the sign. Something deeper.

My car did eventually start – an hour later. As I drove, I was immeasurably thankful. I also felt, deep in my soul, that the car – faults and all – was the car we are meant to have right now. I felt peace.

And I felt something else that I ignored for the rest of the week.

Sad.

I had felt sad for a number of weeks – very, very bone wearily sad. The kind that comes from caring for a person that may never get better. The kind of sadness that comes from witnessing diminished capacity. The kind of sadness that mourns simultaneously for the life that a person could have and the life they actually have.

I barely made it to the end of the week and even once I did, the sadness was still there. Only it had now festered into anger turned inward.

I was crippled by what I thought was self-hatred today. Only to find myself digging underneath all of the anger to discover this deep, deep sadness –

A sadness I had not taken time to feel. Take the time or pay the fine.

And the fine?

Crippling self-hatred and thoughts of self-harm.

So I sat down today, knowing the page could be the canvas for my sadness and I started to write about my jank CRV and a bright red sign that I had thought I understood, but actually ignored.

And I’m here to tell you some things that aren’t pretty and are deeply discouraging. They suck the will from within me. These are those things:

I surpassed my ability to take care of Evan years ago. We are now living in a season of sacrifice. I’m so tired. My therapist says that my responses to Evan’s aggressive behaviors are similar to what can be seen in abusive relationships.

The problem is the abuser isn’t an abuser at all. He is a disabled child who is growing stronger in body and emotion. He has hurt me and meant it. He has hurt me and not been in control of himself. I love him. I can’t stop loving him. He is my child.

But when is enough going to happen that someone can save us from him? I’m not the only one bleeding out here. There are six people in this family. Five of them are held hostage to the whims and moods of another.

Each day, I must choose my response to those moods and whims. I’m very tired. I would rather just die than keep on like this.

But…

There is a part of me that wants to survive.

That part is the one here making confessional, feeling all of this pent up pain. She pays the fine when I don’t take the time to feel.

She hurts worse than words can express.

And I’d like to take this moment in time to honor her for her strength. I honor her for her honesty. I honor her for her sacrifice. And for what it’s worth….

I’m so, so sorry that it is this way.

Candidly,

Ash

 

Fairytale Endings

Lovers stare unending

Upon each other depending

Great quests defeated

Deep fears retreated

 

A bashful onlooker

Tear-streaked face

Sadness overtook her

Between the empty space

 

Oblivion

An insidious delirium

Ingratiating smile

Tastes of bile

 

Absently apathy

Draws out agony

Angry animosity

Harbors no reciprocity

 

Lovers apart

Waste their hearts

Drought dampens the dependent

Wet for ardor and atrocity

 

Come now, have remorse

I only wanted to be

Your curiosity

 

 

 

 

Help from My Friends

We moved here with so many expectations. As my husband and I did the rundown on our last six months, we were both completely dumbfounded at all that has happened. One of us said something about “expect the unexpected” followed by sardonic snorting. (I am an excellent “snorter”, by the way. Not of drugs or anything, just laughing snorts and sarcastic ones too.)

We are so jaded.

First, the whole idea of expecting the unexpected is a sham. If you expect the unexpected, then doesn’t that make it expected? I am not the first one to point this out, nor will I be the last.

Second, no matter how hard we try, humans make assumptions about the future. It’s healthy in so many ways – planning for the future, taking next steps. It’s also a sure fire way to anxiety. I literally have anxiety about my anxiety about the future. Why can’t I just let it lie? I mean, I can visualize the next thirty years of my life in the span of 30 seconds. If I tell myself to stop thinking about the future, then I just think about not thinking about the future – which is really just thinking about the future.

Oh yes, anxiety is a bitch. Sigh.

At points in my life, I have been so depressed that I had no dreams. In fact, I remember several seasons of my life in which I listened to Dar Williams’ “I Have Lost my Dreams” on repeat. Each time I hoped it would help me find a new dream, something to hope in. Sometimes, when the past and present are so bleak, we need a quality hope for the future.

I think the wide majority of my suicidal ideation is tied to a vicious combo of depression and anxiety. In those moments, when the thoughts of harm come to me, I usually don’t want to feel the pain of the past, present or future.

Growing up, I just turned music on and sang it out. I don’t know when that became socially inappropriate, but it did. I turned to fiction novels, specifically fantasy and sci-fi. Why? Because they have nothing to do with reality. I wanted to be as far from reality as possible.

Sometimes, I still do.

Honestly, I think a little bit of that is healthy. I need breaks from the onslaught of depression and anxiety. Taking breaks can be healthy, as long as that is all they are. You see, for a long time I took hiatuses (the exaggerated term for breaks) and I would return to the world, the onslaught, and the breakdown would be even worse.

I cycled like that for years and years. Shit happened. Sang myself out of reality. Shit is still happening. Read myself out of reality. Shit will happen. Try singing and reading myself out of reality. Fail. Maybe I should end it all? How can I end it all? When?

Stop.

I don’t do that anymore. I try not to at least. Now, I have this thing called a safety plan, in which I have to confess to my husband that I want to take my life. We’ve been at it for three years now and it is no easier than day one. Well, maybe it is actually. I mean, we’ve been doing the dance of communication for a lot longer now. He doesn’t ignore comments like, “I can’t handle this anymore.” And I desperately try to understand when it takes him an hour to get to me or he tells me that I need to call my sister or my best friend.

It’s been three years now. I have some dreams – things like maybe becoming a therapist or fostering kids. Yet, I know, deep down that the paragraph I just wrote likely disqualifies me from those things. How could I ever help someone else when sometimes I can’t even help myself? (Right now, I want to stop writing this shit and go eat 25 cookies.)

Yet, truth is an evolution and the truth that I am learning is that everyone needs someone. No one gets by without a little or even a lot of help every now and then. I don’t know what the future holds. I don’t know if my dreams will ever be made reality. I do know that if I expect the unexpected from people?

Then, successfully managed mental illness would stop being a disqualifier to helping others. Rather, it would be a qualifier for helping others. Because I know one thing, those that have known the deepest pain have been the best helpers in my life.

No, not just helpers.

Healers.

Candidly,

Ash

Unboxing a Deity

I’ve written in some of the posts about my faith in God. I try not to think about what people will *think* of my faith or lack of it, that is. It’s hard to separate our beliefs from the people around us, our relationships. How do I connect with someone who knew me as a Jesus-freak, cross wearing non-swearer?

I swear pretty damn good now. (Sometimes even in front of the children) I think I still love Jesus. He always appealed to me – loving and attending to the small, forgotten, less fortunate. The cross, however, makes me cringe, if I’m completely honest. Maybe I don’t care to know a god who uses his son’s blood to wipe away the ugliness of humanity. Maybe I want a god who doesn’t require me to be perfect in order to spend eternity with him or her. Maybe I’d like to know a god who loves me sin and all, no human sacrifice necessary.

It makes me wonder if all of the shame I feel for existing, doesn’t have a relationship with being raised to believe that I had sin nature – that in and of myself, I will do wrong. I mean, I hardly believe I’m perfect or that anyone is perfect. But born to sin? I think not. I’ve held too many perfect, innocent babies in my arms to believe that the *sin* quotient plays into things from the start.

If I were to sum up a lot of what has been happening in my heart spiritually, I would say it is a deep need to reconcile what I have believed with what I do believe now. It comes down to writing what I feel to be true in my soul. I think it is good to explore these thing, write them down, scribble them out, change…

I feel that God is real and benevolent and even God instead of god. I feel that Jesus is worth following and that others are probably worth following too. I’m partial to Jesus though. Maybe its because I was raised that way or because my heart simply remembers Him from the many moments in childhood – moments of pain, in which words from the Bible were the only comfort I found. Jesus knew I was depressed long before I did. I’m certain of that.

I also feel that God isn’t discriminatory. If He or She knows good and evil, then He/She knows how grey the lines between the two can be. I think maybe God is more okay with uncertainty than we think. Maybe God could care less about the holiness of our lives and more about whether we are searching for a spiritual path in the midst of the rubble. Maybe the journey is truly more important than the destination.

Destination – how I hate this part. Heaven. Hell. I remember people in church saying things like “The worst part of hell is that we would be separated from God.”

I’ve been to hell. Maybe not that metaphorical or literal place, but I have definitely been places without God. Many times of my own choosing and many times at no fault of my own.

People (and the Bible) say that God will never forsake us. I wonder what that word “forsake” meant in its original language, because I have felt forsaken and, I think, I have actually been forsaken. Then, that thought alone brings me in a circle. If God is benevolent then how have felt forsaken so very often. Then, another thought, we choose what we feel…and other bull shit. (Not really  bull shit, but sometimes I don’t want to analyze my thinking and choose the necessary thought and then feel the way the thought tells me to feel. Sometimes I just want to be good and angry!)

It felt like God was gone, whether he was or wasn’t. I perceived him as gone, absent. It fucking hurt. It still hurts.

I could do this circling all day long. I can reason and weave my way through a web of contradiction to an evolved truth.

But it may not be functional for tomorrow or a week from now. If walk the spiraling staircase of my belief and faith every single day, then I may not get anything else done. Maybe this, all of this back and forth about God or god and benevolence, maybe its simply a distraction.

I’m distracted from the present moment in which it felt good to say to a benevolent deity, “I know you see me. Please help me.” I think and say things like that all of the time. Perhaps they will never go away. Perhaps its hard-wired into me.

Perhaps it matters very little whether God or god exists or that he is good or wise. Perhaps all that matters is that the breath I take as I say those words centers me, reminds me that maybe, just maybe, all is not lost. Help can be found. I am seen. I am heard. I am not alone.

Perhaps it is what my best friend and I call “both/and”. I may be by myself AND I am not alone. I may not believe God is real and I still pray. BOTH can be true AND I can sit with the contradiction. Both/And.

I am not lost and I am not found. I am simply present.

Candidly,

Ash

And this is Love.

He wailed from inside his small bedroom, screaming kicking, biting no doubt. It had been going on for 45 minutes. When would the child stop to breathe? When would we get peace?

My husband paced back and forth, letting out a mammoth sigh.

“I’m sorry.” I said from my perch on the couch. Then, I realized that I had no idea why I was apologizing. I do that. I apologize for existing. It’s subconscious, but I’m working on it and starting to recognize it. So I re-phrased.

“I’m sorry that something made you sigh.” God, that sounded stupid, but I tried. I tried to come to the moment as an uninjured person.

“It’s just that I get so frustrated with him sometimes!”

Him. The nine-year-old boy wailing and screaming, hitting and biting. Oh yes, frustration made sense.

“I think that’s only natural. Normal.” I responded.

“Sometimes – and I don’t ever – but it comes to my mind to spank him.” Yes, yes, spouse, I fully understand. I have those moments too. I let silence reign though. I knew there was more, because I had felt more.

“He shoved his little brother today and it was all I could do to make him sit in the chair for timeout.” Wow, impressive, spouse! I would have sent him to his room, banishing him from my line of vision. Silence, again.

There is nothing to say in these times. There is no fixing this situation. We have no answers. I have no answers.

When I Have Nothing Left

All I can do is hold space. Hold space for myself, for my spouse, for our son. Fifteen minutes of our silence passed, as our son continued his assault in the next room. We moved on for the night after that. Started a show briefly, until I couldn’t take it anymore.

I went to the medicine cabinet and grabbed some Tylenol. Maybe this nine-year-old, our son, was in pain. Maybe that was why he had been screaming so long? We had tried everything else – food, water, milk, singing, hugging, shoulder massage, head squeezes, making him a burrito with a blanket. Nothing had worked so we had taken a break. Talked a bit. Held the space away from him – for ourselves, because we were at our limit.

Yes. Perhaps this is pain? An earache, headache, toothache of some sort. A simple problem made mammoth by the muteness of my son’s voice.

I opened his door, hoping this would work. I spent fifteen minutes trying to get him to chew the grape flavored Tylenol, as well as keep him in the room. I maneuvered in his way to prevent escape. I knew if he left the room, then he would get to the other side of the house and wake up his siblings.

It didn’t work. Nothing worked. Sometimes nothing works.

Most times, nothing works.

He slipped past me and out through the doors, a useless barrier to the living areas. My husband stopped him before he got too far. Trying to gently, but authoritatively guide him back to his room. I watched in awe as my son mostly complied.

Oh to be stronger than my nine-year-old, to have some command of the situation! I envied my husband.

I stayed in the living room then. Holding my space, attempting to ignore the wild screams of my son as my husband repeatedly redirected him to his bed. Finally, gathering my strength, I returned to the room.

My husband, as I had expected, continuously picking him up and taking him to his bed, murmured  softly, “It’s time to sleep, Evan.”

I crouched low beside the mattress on the floor. We removed hard objects from his room long ago – too dangerous. I shoved the thought aside – the though of what a nice room with decorations and toys would be like – what a typical boy’s room held. The sadness cauterizing my heart, I swallowed and breathed it in and out.

Trying Again

“Evan, it is time to sleep. You must stay in your bed to rest. What do you need to rest?” No response, just screaming and rushing for escape. My husband’s strong arms returning him to the bed.

“Evan, I see that you are upset. We hear you. You are upset.” A slight calming, a glance at me and then wailing again. This time he flopped to the mattress instead of trying to escape.

“Evan, I see that you are upset. I hear you.” Screaming and wailing, a glance in my direction. He laid down, crying still. His bottom lip turning out.

“I see that you are upset. What will help you rest?” Crying only, no more screaming. Avoiding my eyes, he signed ‘eat’.

“Okay, I will go to get you some food.” Wailing again. “Daddy, will stay here to help you be safe in bed.” He was up and screaming, trying to escape with me.

Walking into the kitchen, I hurried to pour milk in a glass. Thinking again, I dumped it into a plastic water bottle. Glass is not safe if he rejects this. Grabbing a granola bar, I walk back to the room, my breath a prayer. “God, this is NOT okay.”

I entered to see that my husband had kept him in the bed, but I knew I could not give him his food – what he wanted, until he was calm.

“Evan, you need to be calm before I can give you anything.” The cry began to dissipate. I dropped to my knees. “I can give you this food when you are calm.” He stopped crying then, his breath shuttering in and out as he tried to calm. I handed him the granola bar. He twirled it in his fingers and began to cry again.

“I hear you. Do you not want food? Drink?” He signed his version of “drink”.

“Okay, you need to sit up for a drink.” My husband gently raised his back to let him know it was okay. We handed him the milk, guiding his shaking hands and the water bottle to his mouth. He tried to drink, but didn’t tilt the bottle far enough to get anything and then began to cry, thrusting the water bottle at my husband.

“It’s okay, Evan. It’s milk. You like milk.” I said. We tried again. He drank this time, gulping.

“Good, buddy, good.” I soothed. He had better control of the water bottle now so I let go.

His breath was still shuttering in and out. I started stroking his leg, thinking of how hard it is. I noticed he was holding his breath again.

“Keep breathing, buddy.” I said and demonstrated a big breath in and blowing it out. “Breathe it all out.” Amazingly, he does. My husband glances at me the way I looked at him earlier – in awe.

We are two pieces of this puzzle.

Moments to Hold On

We sat in silence, the three of us, breathing. Evan twirling the granola bar, nibbling and sipping. Breathing. Calm.

Five more minutes passed. He was still calm.

“We love you, buddy. You are special to us. We want you to be safe and calm and happy – to have what you need.” I said, knowing we all needed to hear it. More silence. And then, he signed something I had not seen in over six months.

Hug.

My husband and I both desperately jumped at the chance, our eyes meeting on the other side of our son, as we clung together – the three of us.

Three pieces in this puzzle.

He wanted a hug – not a squeeze, not sensory pressure – a real hug.

Love.

He loves us. We love him.

We gently eased away the water bottle after giving him a last swig. We left the granola bar, even though I knew it would mean vacuuming and washing his bedding, yet again, in the morning.

As we returned to the kitchen and the house was silent. I looked at the clock.

11:35 pm.

We spent three hours putting our son to bed tonight.

And this is love.

Candidly,

Ash

A Bit of Drama

When I arrived in the group therapy program, I was a smiley person. I’m still a smiley person. Smiley is a default setting in my programing. In therapy, I discovered that I could say things like, “My heart is breaking” without  the dimming of my smile. I’m pretty sure that it is actually very creepy.

Growing up, people always commented on my smile. Literally, I remember chasing other kids around old people at church to the tune of “Just look at that smile”. My smile has served me well. It has been my personal rescue operation in front of the parental firing squad, as well as my political stance during confrontational “discussions”.

My smile also deceived me. I thought I was okay. I thought I had joy and an undaunted optimism. What I really had were 30 years of emotion stuffed inside a body, heart and mind that were bursting. All of it covered by the bandaid of a bright smile.

I’ll never forget the day that changed. I will never forget the day that I wept in front of people. People I had only known for two weeks.

Psychodrama

It started as a simple role-playing exercise that they called psychodrama . In this exercise, I played myself, while one of my therapists played the angry voice in my head. Meanwhile, another therapist sat next to me and helped me not run from the room wailing….errr…he helped me cope.

It started relatively simple. We sat in chairs facing each other – me facing the therapist who was to play my angry voice. I shared a time when I had some very angry thoughts toward myself. I described some of the thoughts I had so that the angry voice therapist could get an idea of what role she was playing.

Then, we began. The angry voice said something terrible, “You are awful and…” I sat there nodding my head. My helpful coping therapist nudged me. This is where I was supposed to respond apparently.

“Yeah, I do really suck.” I said.

I just accepted what the angry voice said! I didn’t try to argue with her. I didn’t try to negotiate. I didn’t even become emotional.

I smiled.

My helpful, coping therapist intervened. “Do you see how you just accepted and agreed that you are awful and terrible? Do you see that you are still smiling after that? THAT is a sign that you are shutting down your emotions.”

Oh yeah, that’s right! I turned the smile off, trying for appropriate severity. Helpful, coping therapist prompted me to say something back to the angry voice. Literally, I sat in front of my therapy group at a total loss for words. I had no idea what to say to the angry voice other than, “You’re right” with a glowing smile. I had no idea what to do!

They let me struggle for awhile, but then my therapist made a suggestion. Tell the angry voice how you felt about those angry words.

“Not good.” I said grinning, ear to ear, my vocabulary utterly absent.

“Maybe with more description, like is it scary or sad?”

“Ummm….sad?” I questioned

“Good,” Helpful, coping therapist said. “You could say, ‘I feel sad about those words.'”

And so I did. We did this sort of back and forth for several minutes, as I desperately tried to connect with some emotion – any emotion! Then, something strange happened as I said that I felt sad.

I actually felt sad.

For the first time in my life, I felt for myself. Not for the perfectionist version of myself, not for the angry version of myself, not even for the shameful version of myself. I felt for the child within myself. No matter how bad she messed up, she didn’t deserve to be belittled.

We continued on in this way, except my helpful, coping therapist didn’t have to help as much. I had found my own voice, my own words. Back and forth I went with the angry voice. I held it together for awhile – until I told the angry voice that I had given up, quit on all of my dreams, just so that I didn’t have to hear her belittle me anymore.

And then something broke open within me. I started to cry, but it was small crying. Crying for something small like a bad week, not crying for lost dreams and regret. It was monumental to me.

But not quite good enough for helpful, coping therapist. He said, “It’s okay to let it out. Look over at your new friends. Look them in the eye. Are they laughing? Are they criticizing? Are they angry?”

Through my tears, I looked at one face. His face and his eyes were the most kind things I had ever seen. His name was Chad. Even now, today, when I think of it, I am reminded of that iconic picture of Jesus with the kind eyes. Except this was real. This was real love, real concern. I dared to look at another person, Holly. She smiled at me. She nodded.

Yes, it was okay to let go.

After that I cried for a really long time. Helpful, coping therapist reminded me to breath. He patted me on the back. Angry voice therapist leaned forward and touched my knee.

“I think you get it now.” She said meaningfully, dropping her façade.

And I did.

I got it. I understood.

Afterwards, they turned on the lights and each of the people in my therapy group shared what they learned from my story or what was significant to them. It was really sacred to me – not what they said, but that they had actually heard. Someone had heard the real me.

And then it was time for lunch and we all walked out to the kitchenette. As I was serving myself a plate full of nasty hospital food, another therapist, who wasn’t in psychodrama, said he had heard about it. He asked me how I was doing.

And I smiled anew. Not because all of the sadness had passed. It didn’t and still hasn’t. I smiled because I knew. I understood.

People aren’t always looking for the truthful answer and that’s okay. I could give them a truthful answer in my own way.

“I am here.” I said, fully present to all that the day had brought – sadness, freedom, relief, grief and, yes, even the joy of being heard.