Tag Archives: Autism Parenting

A Day In The Life…A Special Needs Breakdown

I remind myself that this too shall pass.

EVERY. SINGLE. DAY.

Missing Easter eggs–taken from fridge–still not found?

This too shall pass.

Two teardrop shaped containers of food coloring found in son’s bedroom. Two still unaccounted for. Mattress now looks like Jackson Pollock vomited there.

This too shall pass.

No clean clothes today…most of child’s pants cut up by scissors or missing. Must remember to check the heat ducts later…

This too shall pass.

Looks in fridge. *Stares blankly* Where’d the chicken go?

This too shall pass.

If you are a happy parent, please stop reading here. If you find fulfillment of life in nurturing and raising your beautiful, perfect little yous. Go away. This is not the blog you are looking for and I won’t be nice about it.

If, however, you have had dark thoughts on miserable, cold days. If you haven’t showered in forever and aren’t entirely sure whether it’s Tuesday or the apocalypse. Join me, comrade. And welcome.

*

While studying to get a degree in Russian Studies*, we were assigned the work One Day In The Life of Ivan Denisovich by Alexander Solzhenitsyn. Its simplistic, yet brutal reflection of the miseries of life for prisoners in a Russian gulag are played out in a single day for the title character Ivan Denisovich. What I did not know then, while reading about the struggles of someone trapped in a cold, cheerless existence, is that it could just as well be a metaphor for what it is like to parent a special needs child.

This too shall pass.

This has become my mantra. This reassurance every time my son finds a new and inventive way to make me regret the wonders of fertility treatments: the bad moments pass. It is a lifeline when you feel you are drowning and desperate options rear their suggestive, ugly heads.

This too shall pass.

Sometimes you find yourself sitting by the side of the road weighing bad to worse choices. Because bad are the only choices you can see.

This too shall pass.

I took my son to a birthday party Friday for the son of a longtime friend in the Autism Community. Little Man refused to enter the building. When finally forced to enter, threw a massive tantrum, beating himself and biting his arms, until he realized he wasn’t getting his way and we were going to stay. He sat rigid, refusing to join in—in a place where other children played jumping on trampolines and swinging from giant swaths of spandex dangling from the airplane-hangar-sized ceiling beams. He tolerated it until I would let him go home again.

This too shall pass.

We traveled to the delightfully grey and 40-degree weather in Traverse City, Michigan. I drove for three hours. Got fifteen minutes in the hot tub of the hotel before my son screeched his regrets and left the pool; I took him for his requested walk to the nearby lake where he promptly wanted to leave; returned to the Comfort Inn to sleep to dream of wifi only to be woken at 6:00 a.m. because someone next door took a shower. This was a good day. No major meltdowns.

This too shall pass.

Then yesterday happened.

I took my son to an event sponsored by the school celebrating a program that is intended to engage children like mine with the neurotypical kids. The ones who can play the games and take part in ordinary life. The children not like my son.**

I run into his teachers and classroom aides.

“Little Man had a really good day today.” One person tells me.

“Really, he was very happy.” Another stops to greet my son.

This too shall pass.

They don’t hear it. They don’t hear the bell ringing, the tolling, sonorous carillon signaling the shift from happy child to frantic, exhausted, terrorized hulk.

Neither do I.

This too shall pass.

We win the most patriot looking red-white-and-blue cupcakes at the cake walk—on only our sixth or seventh time around. *Thank goodness.*

I coax my son into a bizarre game where marshmallows—a food my son loves—are tossed back and forth to be caught in cups. None of the marshmallows are supposed to be eaten, however, because they keep hitting the floor. My son sneaks one anyway, confused that he couldn’t eat them in the first place. Has no one heard of cotton balls?

Cupcakes
Guess who snuck these into his room while mommy wasn’t watching?

 

This too shall pass.

I drag my reluctant child to a photo room where mustaches on sticks and leis are strewn to give families props to stage silly portraits. I manage a few with my unsmiling teen and he drags me out after thirty seconds.

This too shall pass.

He attempts to leave the building by several exits. We have only been there a half hour, but he wants out.

I ‘encourage’ my son to participate in a game in the library and he balks.

“One game. Candy Land…or Yahtzee. Then we can go.” I plead.

It is too much for him.

He is desperate and begins hitting himself violently.

Thwack. Thwack. Thwack.

It is the sound of someone testing a melon for ripeness. It is the distant sound of an axe biting into wood. It is my son’s fists cracking against his skull.

He is crying from angst or anger or frustration or stress or some combination of all of these emotions. Or none. Perhaps he is drained and all that is left is the hollow drum upon which he beats an empty tattoo.

This too shall pass.

I push him into a cozy nook for readers to sit by a pretend fire where a painted tree grows to spread its branches overhead. Or so my vague memory suggests. I was too busy dosing my child with a sedative so I could get him out of the building without scaring or hurting anyone.

This too shall pass.

As I am driving him home, I am blinded. Blinded by regrets that my son cannot take part in fun activities. That I don’t get to be the parent encouraging him to stretch his limits, but instead failing to recognize them in time to prevent catastrophe.

It is as if his emotions have spilled over from where he sits in the back seat tearing strips of paper to calm himself.*** He winds the paper around his fingers and I think, “At least he’s finally using all those summer workbooks I purchased.”

I am crying now for the pain he feels but cannot express. For the fact he can never, ever make any real friends because he has such devastating limitations.

That he is so broken and so am I.

This too shall pass.

I pull off the road because, really, I can’t see now. I can’t see the point in continuing.

I park in an empty florist’s lot. The strip of grass that divides my car from the busy traffic is a green wedge of nature slipped between asphalt boundaries and a Panera coffee shop.

I am tired. I am listening to the recording of my parenting failures skipping and repeating in my head. And before anyone thinks to tell me what I great mom I am. Stop. Just stop.

Because you don’t know the thoughts I had.

This too shall pass.

You don’t hear the insidious little fucking voices in your head telling you that there has got to be an easier way than this. That life shouldn’t be this hard. That life shouldn’t be this…

This too shall pass.

You all think there are programs to help families in need. You all think we are getting help to make it through the every-fucking-day struggle of making yourself get up when black thoughts drag you down.

Maybe there are. But you know what? I don’t qualify for them; barely anyone does. You apply through miles of red tape, applications, certifications, interviews, and, if you are lucky, you are put on a wait list to try and get one of the 450 some slots the entire fucking state has to help people with severely handicapped children who don’t qualify for Medicaid.

You heard me. 450 slots. For a state with a population approaching 10 million.

You all think that there must be someone out there helping families like mine make good choices and to step in when things get bleak or despairing. You would be dead wrong.

This too shall pass.

This is the problem with real life. Ugly thoughts are like rancid cheerleaders rooting for destruction. There are no angels to balance you out. Sometimes the monsters win.

But not today.

This too shall pass.

I watch the robins bobbing on the slender manicured lawn that is trapped on all sides by concrete barriers and the threat of chemical castration or decapitation by lawn mower for any daring weeds. The little red-breasted birds are rejoicing in the abundance of rain-forced worms.

This too shall pass.

I turn on the book on tape I’ve borrowed from the library.

The Magic Strings of Frankie Presto rolls out the welcome mat to sanity and invites me to listen. It takes some kind of talent to write a comedy set around a funeral.

Fifteen minutes later, I’m safe to go on.

If anyone knows Mitch Albom. Tell him, thanks.

This too shall pass.

In writing this, I was reminded that in college, I found One Day in the Life of Ivan Denisovich to be uplifting. Despite all of the misery, Ivan Denisovich finds moments of grace—not religious—but humanizing that help him to eek joy from the life he does have.

Ivan Denisovich got fish eyes in his soup.

I got robins bobbing for worms and the lyrical beginnings of a musician who might be a magician. Or vice versa. I’m not sure yet. The story has only begun.

I’ll have to listen for another day.

Asterisk Bedazzled Footnote:

*Because I’m all about collecting useless degrees. Ask me about my aborted career as a teacher. Go ahead, *cocks imaginary pistol* ASK.

**The normals (aka The Little Fuckers.)

***The real reason why I donated my son’s books to the school—because watching him destroy something I love and had hoped would connect us is too painful.

 

 

———————————final thoughts——————————————-

I am fine. It was just a bad moment. We all have them. Do not contact the authorities or  the Department of Human Services. I shared this to let the world know we have a problem with our resources and mental health care assistance to families in need and maybe to let other parents of special needs children know they are not alone. We just need support.

If you want to act, check out our local Autism Support of Kent County (A.S.K) agency http://www.autismsupportofkentcounty.org. They have helped my family as well as others in various outreach programs and financial aid for summer camps and therapies. Their Annual Walk for Autism is Sunday, May 7, 12:00 noon– at John Ball Zoo, 1300 Fulton W, Grand Rapids, MI 49504. If he’ll go, I’ll be the one leading my son around with a bag of marshmallows.