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.



Shiny, Happy People

Yes, I have pulled the song up on YouTube in order to write this post. Look it up now if you haven’t heard it – Shiny, Happy People by R.E.M.

No one should live in ignorance of R.E.M.  But that’s just personal opinion. Ha!

Billy Graham died yesterday. I stopped scrolling Facebook. I couldn’t handle the onslaught of Shiny, Happy People cheerleading Billy Graham’s arrival in heaven. This sort of cheerleading annoys the shit out of me.

Billy Graham is in heaven! No pain, a new spiritual body! Praise the Lord!

Oh, just stop. *Insert exasperated sigh.*

  • A. Maybe some people are ACTUALLY grieving and aware of their emotions. Shut your happy mouths! Cue “Everybody Hurts” by R.E.M.  Seriously, YouTube just rolled over to it.
  • B. No one was cheering when Jesus died…so let’s take a step back.
  • C. IF there is a heaven, then you have no clue what it’s like. Stop saying they are looking down on us and watching over us. If I was in heaven, then I sure as hell wouldn’t look at earth!

All of this though, it’s funny (to me) and it’s total projection. The truth is this…

I was a Shiny, Happy person.

And it almost killed me. All of the smiling, do-gooding – it’s just a low grade fever ready to spike.

Everybody hurts. Everybody cries, sometimes. Sometimes, everything is wrong.

We shouldn’t pretend otherwise. Yes, heaven offers hope, but we aren’t in heaven, folks. This is earth and pain is a thing. All of the suppression of grief, sadness, pain? It’s oppression.


The Magnifying Glass

There are times in life when the ache is surreal. The mind can’t possibly fathom how life could be this way – one thing after another, no stopping or pausing for the heart. Sometimes, these moments seem amplified, because of the grief or the fear that is being carried.

When I became a parent, I never imagined that at nine-years-old my son would not talk or communicate his needs. When I dreamed of the future, there was no non-verbal child riding next to me. Then, slowly, I realized that his words, sentences, phrases, writing or even singing would never happen (though I still hold out desperate hope). Suddenly, every ache, every pain was held under a magnifying glass called autism.

It Happens to Everyone

Like many normal families, we always timed our Chick-fil-a dinner slightly before or after the dinner rush. It was worth it to have the playground to ourselves or just a few others. We had three small ones at that time, all under four-years-old. Having the playground to ourselves was of prime importance and worth every hangry child by which we were accompanied.

We sat in our booth next to the glass windows overlooking the playroom, waiting for our food. He shrieked and cried with the best of wailing. “Please, Lord, let the food come soon!” I prayed, knowing it was the only thing that could make him happy.

Except it didn’t.

He grew louder and more angry by the second, until he started knocking his head against the glass window. I rushed from across the table, blocking his head from hitting the fragile frame, but not before the glass panes bounced and resounded from the force. Everyone was looking at us. The “control-your-child” stares induced my shame.

Like my father and probably his father before him, my husband took him to the car. Once he was calm, he brought our son back into the restaurant, at which point the screaming and crying began again. This time though, he thrust his wrist into his mouth and bit down. The shrieks were louder now, his flailing body in pain. When I finally pulled his arm away it was bleeding profusely in the shape of his own teeth.

We exited the restaurant then.

As we sat in the car, I turned to my husband and said, “I think there is something going on with our son.” Putting the car in reverse and looking over his shoulder, he said, “Yes, I think so.”

Magnify [mag-nuh-fahy] v. to increase the apparent size; attribute too much importance; exaggerate

A simple trip with hangry children, every parent has been there. Everyone has been stared at for one reason or another. The shame and the pain are familiar. Yet, the real sadness of that story isn’t in the familiar tale. The real sadness comes from a lens held up to the scene. This particular magnifying lens helps me to scrutinize the scene like a detective – amplifying the evidence.

This is just one lens.

We all have lenses. Some of mine include depression, anxiety, grief, loneliness. A day off appears to be a colossal waste of time and existence under the lens of depression. A day off plays out as laziness under the lens of anxiety . A day off becomes a day of mourning under the lens of grief . A day off under the lens of loneliness? Solitary confinement.

In life, I want to be careful to step back from my lenses every now and then. At times, I need to be a bystander of my pain, reflecting on it without the distortion of magnification. Only then can I see the pain for what it is. In this way, a demon becomes a teacher, forever becomes a day, and tomorrow a ray of hope.

Let the Pain Move through You

I didn’t know adulthood would be this way.  I didn’t know there would be so much pain, so much less for which to live. Sure, there ARE so many beauties to behold, so many paths to walk, so many dreams to dream. Yet, there are just so many bills and crying children and lots of holding the space for people, for myself.

It’s a challenge – the holding of space. When I dreamed of homeschooling, I followed a lovely mother who had so much knowledge about “teach-moming”. She talked about holding the space like it was a sacred thing. Her idea appealed to me so much that I bought every printable, curriculum, book thingy she could possibly create.

The idea of “holding the space” was that sometimes the small people simply need people to be quiet. They need adults to be calm. They need others to pause. The instinct, when the shrill screaming of a small one rents the atmosphere, is to rush to them and say words, to instruct. I am instantly in their face and fixing/breaking things. I mean to fix things, but most of the time I break things instead. I break small spirits. I crush opportunities for growth and decimate plains of open feeling.

I found this principle, combined with assertiveness and observation, to be the most altering of any parenting technique. When I stopped and held the space, the small people could do all that they needed to do and so could I. The pause, the observance, the stillness allowed them to calm themselves. Sometimes they didn’t, but the holding of space also allowed me to calm myself. I always responded better when I was calm and still do today.

I found the idea of holding space to be similar to holding the note at the end of a song. In choir or band, we would look to the conductor and just hold the note, waiting for her to signal the stop. Similarly, in parenting a climax or crescendo might erupt from the small people and I would be the conductor to whom they were looking. If I cut the note short, then everyone was less satisfied. If I let it resonate, echo and dissipate, then the satisfaction of an ending could occur.

Pain is like a small child too. It needs me to hold the space – to pause, observe, resonate and diminish. It needs the process, the movement, the freedom to be the place where time and meaning great each other. The problem is that I didn’t have enough people holding the space for me while I was growing up. The eruption of pain was a geyser of uncontrollable proportions.


Like a geyser with hot steaming water shooting into the air, my pain shot into the atmosphere spreading its deluge of scalding energy. It makes me imagine the person who discovered geysers. Frantically, they must have sought cover, desperately trying to reshape a world where water poured endlessly from the ground. Water from the ground – mind boggling.

This is the way I viewed pain my whole life, because the space was so rarely held for me. I needed someone to pause and watch, noticing the diminishing of the onslaught of scalding water from the ground. To show me that the geyser would come and go. Pausing to watch the magnificent spectacle was all that I needed. Watching it rise higher and higher, then temper to a small spray easing itself into a trickle that I could touch without being harmed.

This is the process of pain.

I need only let it move through me. Maybe through deep breaths or tears, perhaps pounding pillows or squeezing them tight, stepping into the heat or the cold and closing my eyes, walking the path in a nearby park, standing or dancing in the rain, listening to the music or holding the pregnant pause – these are things pain needs from me. These are the things I need from myself

“Surrender to the grief, despair, fear, loneliness, or whatever form the suffering takes. Witness it without labeling it mentally. Allow it to be there. Embrace it. Then see how the miracle of surrender transmutes deep suffering into deep peace.” Eckhart Tolle