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

Doing Doesn’t Complete Me

I don’t know what to say. Drudgery and monotony have me laid flat. It’s open space for sadness to play. Perhaps that is really how I am today.

Sometimes life feels really meaningless. I think Thursday is a day that I often feel this way. Most of the week has passed and I usually find myself asking, “What did I do this week that even mattered?”

It’s easy to feel that I don’t matter when my week, my actions don’t seem to amount to much.

I suppose my small actions do matter and that I matter. My brain says that those are probably true things.

I just can’t help feeling empty, dissatisfied. I wonder what I could even do to feel complete.

Perhaps nothing is the answer. Doing doesn’t complete a person.

But what does complete a person? Why do people matter?

Today feels like entropy – a gradual decline into disorder.

I don’t really feel okay with this state. I want to reject it, imagine it’s not there. But the void is there.

Candidly,

AshI must learn its shape.

Humanity is Hard

Butterflies are in my stomach frequently these days. It’s a new feeling, because my mind is aware of all that is happening around me…and it’s freaking out.

This could be called anxiety, but I’ve sat with it some and realized it’s simply my brain trying to cope with new information.

It started about a week ago when we increased the dose on a medication that has been working well for me.

The first thing that happened is that I started to find the games on my phone boring, which I admitted was probably a good thing. Then, I noticed that I couldn’t nap on command, my body was too aware and awake to zone out.

This is when I realized, “Holy crap! I’ve been zoning out A LOT!”

But now that I’m not zoning out, I’m also aware of things like boredom. My brain has a tendency to think boredom is actually bore-DOOM. It knows that if I’m bored then there is space for something to happen. Emotions can happen!

So I began busying myself, even when I didn’t want to be busy, because bore-doom needed to be avoided. Unfortunately, this, like my phone and napping, no longer kept those emotions nicely suppressed.

So now, I have this medicine that is helping me feel like a human being again…and the truth is, I’m not sure I want to be human being. It’s hard! I prefer zombie mode.

But I’m sitting with it, sticking with it, not running. Gently pressing into this wealth of feeling and trying not to be overcome. I wait for the shoe to drop with the next wave of unfamiliar emotions, the nerves in my stomach tightening with the sensation of butterflies.

The butterflies will pass. The pain/fear/anger/sadness or whatever emotion will come.

Then, it will pass. The feelings will pass. I will still be here.

Yes, I can handle this. I think…

Candidly,

Ash

Tam Vanam?

By: Ashley Kaylor

for Evan, my ray of heaven

 

it feels like a desperate black hole

a pit of apathetic hunger

Unassuaged by the sustenance of Life

 

How deep the need, the

Disparaging Ruin

a race Unwon , a life Unhewn

 

burning hot tears scald cheeks grown cold

Mists and steam rise from the pain

an Ice-like Vise around my chest

the droplets fall Uncaressed

 

where have you gone?

what have I lost

bright horizon, dissipating fog

all tied to one ray of Heaven now sacrificed

 

the garish abyss of lessened demand

‘Tis a Principle to withstand

 

 

 

 

 

 

Sadness Moves On

I’m not overly enthused about writing here today. I’d much prefer to sit at some fiction and dream. I also know that this type of writing – the kind that causes me to delve deeper, it is probably the most important writing I do. I grow from it. Sometimes things which make us grow are not fun or exciting, but rather fairly difficult.

In our house, the theme of late is that sadness moves on. From the toddler to the nearing-forty daddy, everyone in our little house has been dealing with sadness. And so, as we talk to each other, we remind one another that feelings pass and shift and move. The eclipsing pain is not going to stay for every moment of the rest of our lives. It is temporary.

For the toddler, this looks like us singing a Daniel Tiger song (Thank you, Mr. Rodgers!). “It’s okay to feel sad sometimes. Little by little you’ll feel better.” For a little while, he would get upset about anything and just haul off and hit one of us. First, we would move away from him and say no, but this didn’t seem to be working after several months. Instead, I got closer to him and patted his back while using words to describe that he was sad and why he was sad. This started working immediately and we’ve had much less hitting. Of course, then he might cry and cry and cry and cry. So we added the Daniel Tiger song in. I think he’s mostly distracted by us singing and that’s what helps, but I’m hoping someday that he’ll actually get the full message.

Then, there is the 8 year old. She likes to do this sort of the rage-screaming thing when something upsets her. Again, I’ve been using the tactic of drawing close and comforting, acknowledging the feeling. It’s amazing how much closer we are becoming, because of this.

Evan’s been having a hard time at school. He’s having hours long behavioral episodes in which he bites himself, hits his head and attacks others. He does NOT do this at home. So I’ve been coaching his teachers on acknowledging his emotions and comforting him. Frankly, I don’t think they believe me that this works! We are going to schedule a day where I could come in and demonstrate. Although, I’m fairly certain that he’ll be so happy I am there that I may not get the opportunity!

I just want to acknowledge that his teachers are awesome and caring, loving people. As a teacher, it is so hard to watch out for the interests of ALL children in your classroom. Additionally, an authoritative voice is recommended to them in training. **Side note: Authoritarian is the volatile, commanding voice. Authoritative is the respectful, no-nonsense voice.**

Evan doesn’t respond well to either Authoritarian or Authoritative communication. He is at a three year old developmental level. Three year olds need soothing, calming presences in their lives. People often describe the terrible twos and threes. What is really happening in those situations (in my opinion) is that these children aren’t able to communicate the things they think and feel. We must teach them to do this in a caring way by acknowledging their thoughts and feelings verbally. Often this requires removing our agenda and even calming our own emotions. For instance, with Rhese we sing “It’s okay to feel sad….” Whereas, the alternate model would be to say, “You are okay. Go pick up the blocks now.” Or even more horribly…”What is your problem? Go pick up those blocks NOW!”

I can’t tell you how much changing our approach to the feelings of small people has helped!

Alright, back to our family. I was on a tangent…

The oldest is doing a stellar job at the sadness thing. She can identify that she is sad and communicate it. Our new thing is teaching her to communicate what she needs and wants in those moments. She will say, “Mom, I feel sad about not having my old friends nearby.” Then, I will respond, “Okay, what can I do to help?” or “What do you need?” Just this weekend she walked up to me and said, “Mom, I’m sad. Can I have a hug?” Really, she’s magnificent. I’m not sure I’m even able to do that most of the time. (more on that in a bit)

Hubby is dealing with a job that is atrociously stressful and does not compensate for overtime or education and experience. In other words, his job stresses him out and lack of money stress him out. Not to mention, this has been par for the course going on ten years. There is an ongoing drudgery in his day-to-day.

I’ve been wanting to rescue him. Take a job and fix this financial situation. I’ve offered. We’ve even bought and then returned interview clothes for me. Yet, my truth is that I’m doing what I’m supposed to be doing – writing, teaching the kids how to deal with sadness and dealing with my own sadness. Its about all I can handle. I wouldn’t return to work for anything – except to alleviate my husband’s pain. It is so tempting to give up what I need to help others. I’ve done it in the past so, so, so many times.

The truth? It is his responsibility to create a life he doesn’t want to hide from. Just as it is my responsibility to create a life I don’t want to hide from. We have to do that individually before we can achieve a collective relationship or family we don’t want to hide from.

Life is hard. It’s hard to get what we need. It’s painful to not have what we need. It’s discouraging to not get what we want. Its difficult to communicate to others our sadness and pain. It’s even difficult to acknowledge sadness and pain to ourselves, let alone others.

I came here to write with not much to say. I thought I would describe how, lately, our family lesson is “Sadness moves on.” I didn’t want to write here. I didn’t want to say much about me. What is my sadness? Yes, I want to help my husband, but I can’t. That is sad, but its not the low-grade fever that is consuming me.

My low-grade fever pain is not being able to heal Evan, not being able to fix things for him. Though I will NEVER give up on Evan, sometimes it feels like I’m so close to it. This song speaks to my heart so deeply. I’m so in over my head with this little boy. Sometimes, I just wish God would just give him one sentence to tell us something, anything. My son is lost to me in ways that were never meant to be. I just wish he and I could…I wish we weren’t broken. I truly love him the way he is, just as he loves me the way I am. Yet for us, because of autism, something is missing.

And this life feels hollow.

Candidly,

Ash

Talking to Myself Makes Me Less Crazy

We like to ratchet up the stress here. You know, as soon as one problem is solved then another appears. I’m using a tongue and cheek tone, because I honestly don’t want to connect with the way I feel about our latest turn of events.  Alas, the cathartic writing forces me to the keyboard and screen to bleed. y

Today, Evan is home from school because he was suspended for biting the teacher’s assistant. So far he has pulled out three of the floor vents, destroyed 5-6 crayons, climbed on top of the entertainment center (yes, by the TV!), destroyed our soap wand for the kitchen sink by tearing off the sponge pad and then pouring all of the soap all over the counter and opened the oven numerous times to play with the glass on the inside. Yay, an oven obsession! Because that’s not dangerous or anything.

It’s 10:00 AM.

So far I have moved a load of laundry, cleaned our shower, signed up for a fitness challenge with friends and now I’m sitting down to write. The truth is that a day with him, though he is delightful, is exhausting. Add in that he is suspended and that after 10 suspensions he can be expelled? Well, I’m surprised I’ve managed to do much of anything.

Very rarely am I at a lose for words to type, but on this issue I have so much apathy. I’ve shutdown so magnificently. Sometimes, I think that is a good thing, because things still get done and I’m not overwhelmed by my emotions. And yet, I know there will be a fall out.

Repressed emotions = Negative Self-talk

I used to think my inner critic was evil, a virtual gestapo in my head. I mean, if she wanted, that critical voice could convince me I don’t know how to read. She’s that potent.

Then, my therapist suggested that the negative self-talk was really just a giant clue – a clue to what was bothering me. This morning I woke up and went about getting breakfast to the tune of “I hate myself.” Literally, the thought was on repeat. It’s not a new thought and one that I am (unfortunately) accustomed to.

I didn’t really acknowledge it and went about my business. Then, the task “write” popped up on my phone and suddenly I just feel a blank void. I didn’t  have anything to write about. How strange (I always have things to write about)!

What is going on with me?

Oh, that’s right! I hate myself has been the background music for this day. I sit with a  blank stare, looking at the shattered screen of my laptop. I know its time to delve. I begin asking myself a serious of questions.

“Why do I hate myself today?”

The reply comes.

“You are terrible at entertaining Evan and keeping him out of things. You suck as a mother.”

“Geez, don’t hold back or anything.” I say to the negative committee in my head.

“Well, you asked! I answered.” The mean voice in my head says, folding her arms across her chest.

“Great job, self! Way to inner dialogue.” I say sarcastically to her.

I pause. I’m supposed to consider what feelings those thoughts bring up instead of having a sarcasm war with myself. Let’s see…

“When the mean voice in my head says mean things about my mothering abilities, it hurts.” I say.

“Yeah, no shit! I’m trying to get you to do better. The kid can’t even talk, doesn’t know how to play, dress himself, read… Geez, we’re lucky he shits in the pot most of the time!” The angry voice says to me.

“It’s just that…even if I do better, work harder…he might not learn. He probably won’t learn. I’ve tried before. It didn’t work.” I say in defeat.

“Yeah, precisely. We need to get this show on the road, muscle up! Let’s go lazy ass!” Angry voice counters.

“No, I don’t think you are hearing me. Look at all I’ve done this morning, while also cleaning up all his messes and managing not to be angry or cruel to him.” I defend. “I can’t do better than this.”

“Really?” She says skeptically. “Because if you can’t do better, then this really sucks. It really sucks that THIS is life.”

“Yeah, I know. It sucks. This life sucks.” I say softly.

“I was just trying to get you motivated, to make it better for you.” The angry voice softens and turns into a good friend.

“I know.” I say.

“He’s really not going to get better, huh?” She says.

“No – I don’t know. Maybe.” I say resignedly. “At least, there is nothing I can do to make him better. We’ve tried all of the *things* that *they* suggest. Seven years of ABA therapy and he still can’t attend school without the threat of expulsion. He still can’t talk. He has no more skills today than he did at three years old, except the potty training, of course.” I shrug.

“Well, there’s that.” She says knowingly.

“Yeah, he shits in the pot. Go us!” I say half-heartedly.

“You know, I’m proud of you for trying to do stuff today – to be productive. For cleaning up the messes and not losing your shit with him.” My new friend says.

“Yeah? You don’t hate me.” I say to myself in surprise.

“No, I don’t hate you.” Former gestapo girl shakes her head. “I was just out-of-tune with . what was really going on. So we’re just going to be sad today?”

“Yeah,” I reply. “Sometimes it passes – the sadness.”

“You don’t say! Huh,” She shakes her head. “I thought it was forever.”

“I know. Me too.”

And so I go about my day, not thinking I hate myself anymore, but feeling really, really sad. Luckily, it passes when I accidently put the hot dogs in the filing cabinet while making lunch. Evan’s sensory toy ended up in the refrigerator.

Life as a mom – sad, happy, tiring and, as always, hilarious.

Candidly,

Ash

 

Oh, How I Run from Myself!

It is Monday afternoon and, truthfully, most Mondays I am eager for the day. I’m ready to get back into my to-do list, accomplish things. See here, where I disclose being a total productivity fiend. Monday is the one day that always seems to be productive for me. Maybe it’s because I’m fresh, unjaded by the previous week’s letdowns.

This Monday, however, is very different. Today, I didn’t want to pick up this laptop with a  cracked screen. I knew what was waiting for me. I say it often, that writing is like bleeding for me. Sometimes its extremely cathartic, like how people say acupuncture is great. I’ll never know about acupuncture though, because…needles.

There it is – needles, perceived pain.

I can’t get past the idea of needles, many of them in my face. A good friend of mine once told me that the needles are so very small that you don’t even notice they are being placed. Maybe she doesn’t notice. I, however, would be writhing in the anticipation of the pain and no needle would ever graze me.

Because that is what I do. I run from the pain.

This morning, I wanted to run from the pain. I didn’t want to sit here and bleed, cathartic or not. I wonder how thirty-three years of my life have passed and I am still afraid of that benevolent teacher known as pain.

Why do I not befriend her? Call to her and say, “Come, I will hear you out.” How long will it take for me to set the welcome mat out permanently.

I do not know.

I do, however, know that I will keep trying. Today, I will sit down at these keys and not run from myself. I will listen and honor the voice within.

She is saying….

I feel dead inside. Not like the autumn leaves returning to the ground, but like the decomposition of a slaughtered animal. Left too long in the sun, unburied and festering, I feel dead inside. How does a soul emerge from such noxious smells and grotesque twists of flesh? In nature, the decomposition is slow and lengthy, the byproducts nourishing.

Maybe that is what I need to expect from this sadness and angst that I feel – a slow and lengthy process that nourishes the world around me.

I wonder who is nourishing me, though. Ah, that is right, dead things don’t eat. They don’t need sustenance. They simply rot away, no one giving a thought to their sacrifice in the life cycle. Who will remember them?

I chuckle to myself, remembering my dear gardening friend, Lori. She loved her compost like it was a living thing and not quite the opposite. She marveled at the worms flocking to the pile of the dead and rotten. Their slimy, writhing bodies inching so slowly, purposefully in the direction of the deceased, the unwanted. I never knew anyone could love worms until I met Lori. I never knew compost could be an interest and passion.

Perhaps all that is dead inside of me, simply needs a farmer or gardener to see its worth. Perhaps I can be my own farmer, tending myself through a slow and lengthy process. I am reminded of how Lori explained all of the different ways to compost, the different tools. Maybe, if I don’t run from the dead things inside me, I can find the right process to enrich the earth.

That is, after all, what I most desire from my pain and the death I feel – that it live on in the things which grow.

Candidly,

Ash