Letting Go…

Evan paces constantly, picking up items and throwing them down in random spots. He doesn’t play. He just moves from one spot to the next bringing items back and forth. Along the way, he’ll fidget with them, trying to feel the textures.

At least, that is what it looks like he is doing.

Anymore, I’ve stopped wondering if there is more too it. Anymore, I am just weary of the constant movement. Just. Sit. Still. Please.

It’s frustrating – to watch him do nothing but this pacing. It reminds me that he’s abnormal, different, other. I have tried in the past to be fascinated with his otherness, to see his differences with rose-colored glasses. Then, an awareness came to me – I’m looking for something that isn’t there.

Cognitive delay.

I have fought with people over this. I have insisted he knows everything we say, that he is smart. Then, I watch as my husband asks him to pick up a toy and he picks up a blanket. I watch as he paces and I wonder how long have I been clinging to something that isn’t there.

I think the difficulty of autism is the unknown. It truly is possible that Evan is smart. It truly is possible that he has cognitive delay. Depending on the definition of smart, he might have or be both.

Then, I realize as I watch him pace that I am doing the same thing as him. Re-walking the same threads of thought, a pacing of the mind.

But I don’t have to.

I am the consciousness that listens to my thoughts – and lets them go. I let go of the unknown. I let go of whether he is or isn’t smart, whether he knows what i am saying.

As I let go, I am set free.

If only he could be too.

Candidly,

Ash

When My Strength Fails

The phone rings. Again. It’s the doctor, the really kind doctor. The one who calls you instead of assigning the task to his nurse.

He wants to increase the medications. Again.

I ponder how much longer it will take to reach the maximum dose.

Because I know the medication isn’t enough.

I know that modern medicine has failed my son. I know our only hope lies in a specialized facility.

Because I know…

I am sad. I am tearful. I feel lost. I feel powerless.

Powerless. Such a small word for such a large feeling.

This is the part where I choose to believe in a higher power. Not because I’m certain God exists or that He will intervene. I choose to believe because its my only option. Some people say God is a crutch for the weak.

I’m here to say – I am weak.

I need there to be a God. I need that God to be loving. I need to believe that…

Just so I can go on.

Candidly,

Ash

P. S. “The Lord is good to those who wait on Him. It is good to wait  for the salvation of the Lord.” Lamentations 3:25-26

 

The Mountain Range I Travel

I’ve been thinking about autism a lot lately – how its talked about, it’s symbols. Specifically, the puzzle piece comes to mind.

I remember when the puzzle pieces seemed meaningful. I remember when I thought this disease was like a puzzle.

In a lot of ways, the analogy fits. Everything we have tried to help ease the effects of autism claimed to be the missing piece – the one piece that would make the puzzle whole.

I’ve come to learn that autism isn’t like a puzzle and there is no missing piece. Autism is most like a series of mountains. You climb up one side only to slide at light speed down the other side.

Into the valley.

People, guides, come into your life for one mountain, but not another. No technique, no skill seems to work twice. Every hurtle is a mountain. There is no runner’s form to prepare you for each coming uphill battle.

Perhaps the only way to survive is to adopt a posture of serenity and responsiveness. I imagine myself centering after each bump in the road, not engaging with the battle, but stepping outside of it.

The truth is that I have the ability to press pause while the battle rages. I can climb the hill and overlook the scene. I don’t engage in every fight like it is my life on the line or at least I try.

Maybe this is a good thing. Maybe not.

It’s the way I’ve found to cope – to carry this grief. There is no missing piece for which to quest. This isn’t a puzzle that can be solved.

This is the mountain range I travel.

Candidly,

Ash

Around the Spiral Stair

Someone wise says that life is like a spiral staircase. We just keep coming around to the same problems, but each time we are closer to the destination.

That feels very real to me today.

Rhese was referred for speech services today. They truly do not think it is autism like Evan. Yet, we are playing catch up once again.

I remember when Evan was referred for speech. He had no words and he was much younger than Rhese is now. If you told me then that he would never speak, I would not have believed it. I was optimistic and felt like the therapy would help.

I feel that way again.

Except.

I’m also feeling the foreboding that is natural with doing something a second time. I feel like I should be worried. Perhaps, deep down, I am underneath. Perhaps I was worried deep down, underneath with Evan. Perhaps all of the optimism is just a sham. A way of coping? No. A way of not feeling? Probably.

How do I crawl beneath my façade? How do I find what’s really inside?

Inside I worry that Rhese has ADHD so badly that he is missing things already. I worry that maybe he won’t start kindergarten like a normal boy. I worry that he will be categorized as the ‘rambunctious’ or ‘bad’ boy. I worry.

I am sad.

I am sad that I have to worry again at all. That, for just this once, I could have smooth sailing. I’ve done all the worrying a soul can do.

And so all I have is low-grade fever of sadness and the words of The Beatles song to comfort me….

Let it be.

Candidly,

Ash

Mysteries of Sadness

The sky is cloudy today and that is how my heart feels. Clouds of sadness come and go.

Why am I even sad?

I wonder if I am the only one who experiences mysterious sadness. I don’t even know where it comes from until I sit with it for like ten hours. Perhaps that is how badly I had boxed in my sadness. I used packing tape on all sides of that box.

I wonder if there will ever come a time when all of my past sadness stops bubbling to the surface.

As I sit with this sadness today, I know it is about being enough. I have seen other children grow so that their autism doesn’t affect things as dramatically as Evan. I have stood next to moms and hashed out the problems. I have done the things they have done.

But he isn’t cured. He isn’t healed.

And I can’t help wondering if it was me.

Maybe I didn’t push hard enough, try enough.

Maybe it’s me.

Maybe I don’t have to buy into those thoughts.

But what would that even look like?

I cannot say.

Candidly,

Ash

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