The Village that Holds Us

So I've been re-reading my posts from before I knew Elias lived within the spectrum of Autism.

His first few years, when he struggled with developmental delays but smiled and laughed endlessly. When I obsessively worried about his inability to walk but never once felt suffocated by behavior.

Behavior? What?

Not my happy little guy.

 

At times, late at night, when I'm reading these old posts, I find myself silently crying, alone, at the kitchen table. What happened to my easy-going kid?

Often exhausted after a full day of fourth grade, he sits, rubbing his eyes, scowling at his sister, saying anything that opposes her demands.

And boy does she have demands.

She turned four and turned on her ability to attempt to manipulate with tears and tantrums. She only wants Mommy and she freaks out when we decline her request for a treat after a barely touched dinner. She tortures Nick on the way to and from preschool every day. The star student in front of her teacher, the demon Evil-O the moment she enters the truck.

It is all we can do to survive till bedtime.

And more nights then not, I find myself crawling into my own bed, clothes and all, before nine, too spent to do anything more.

I spend my days as an elementary counselor responding to behavior and my mornings and evenings are like the parenthesis on either side of the barely contained chaos.

Last Friday night, Nick bought accessible ticket's to a UAA hockey game, thinking it would be a fun way for a family to end the first week back after winter break. We went to a game in December, and besides Elias falling on his face on the concrete and getting a fat lip, it seemed like he enjoyed the evening.

When Nick picked Elias up from Camp Fire on Friday, he told him about the game and Elias seemed interested. But as soon as they got home, his lower lip started to quiver and the tears promptly followed. "I don't want to go!"

Of course Olive wanted to go.

And no matter how we spun it, Elias returned to his anxiety cloak. "I really don't want to go to the game, Mom!" He repeated, in every way he could.

And he hugged me, in a way he rarely does, full arm squeeze with his head on my shoulder and I knew there was no way I was going to make my boy go to the Sullivan Arena with its lights, sirens, music, and cow bells.

So do we disappoint Olive to appease her brother? How many times will this happen? How may times already have I expected her to move on when I knew he couldn't?

We decided to split up, even though Nick and I longed to spend some time together; but of course both kids wanted Mommy to be with them.

We'll decide, we said.

And this is where the village comes in, and holds us up, keeping us from retreating into our own particular dens.

"I wonder if I could call Ms. Julia?" I asked Nick, out of earshot of the kids.

He shrugged. Maybe. And I just picked up the phone and called.

We all need to ask for help sometimes.

"Hi Julia, so um first, just know you can say no. We bought tickets for a  hockey game tonight and Elias is freaking out about it. And well, of course Olive really wants to go. We were going to split up but I was just wondering um if you happened to be free and Elias could come to your place for a bit?"

Not only did she say yes, after her fabulous husband Fred agreed to postpone their date night till Saturday, but she offered for Elias to spend the night since the game wouldn't end till after his (and her) bedtime.

When I returned to the kitchen, both kids stood waiting to hear whether I was staying home with Elias or going to the game with Olive. They looked up at me all serious and old.

When I announced the new plan, Elias's shouted, "Yes! Yes! I want to go to their house!" And then he cried, no sobbed, as he laughed joyous tears laced with relief.

Neither Nick or I had witnessed such a genuine expression of emotion from our son, besides anger, in, oh I don't know, months, years...

It's all in there. Every emotion. They just don't always come out as fluidly as my own. They get tangled in the cross-wires of his mind deceiving us to sometimes think he doesn't feel the more complex emotions beyond anger and excitement.

As I sat at the hockey game, I found myself surveying the scene as if I were my son. "Of course he would hate this," I said to Nick. The blaring music every time a whistle blows. He can't see the game but his senses are bombarded by noise and light and movement. The horrid siren and cowbells. The confusion of it all.

And it hit me, again, that as the mother of a typical girl and a boy with sensory, vision, mobility and communication issues, we will always have to make accommodations, even as we attempt to just live out our life as a united family.

And to do this, we need help. Lots of it.

And I just want to say thank you, to all of you, for being a part of my village. Whether I know you or not, your support of my writing, of my need to tell this story, so that I can learn how to be Elias and Olive's Mom, keeps me going, even when I find myself alone at the kitchen table, with tear-stained cheeks

Comments

[Kate]

Oh Christy you are never alone! Even if I don't always comment I am checking in here to see your update and sending all my positive thoughts and my admiration and some good chocolate/beer/downtime/ date nights your way. I hope you do collect your works into a longer piece and I will be lined up to order it. But I will miss the more frequent posts so was thrilled to find a new post today. In any case you have a devoted following here and in real life who are privileged to share your journey. Thanks for portraying it in all its complexity.
Kate

[s.e.]

You describe it so well. My dd isn't on the spectrum but she has developmental delays and huge sensory issues. She turned 17 in december and she has gotten so much better at verbally expressing when and what she can't handle rather than just freaking out. Even I was bothered by the guy stinking of pot on our bus a couple of weeks ago.
Loud, noisy crowded events, no way she says. Have you ever thought of letting him use the ipad and headphones if you have to take him to a situation he will find difficult. Being at school all day 5 days a week is often sensory overload for sensitive kids:(That doesn't leave them a lot of tolerance for situations in the rest of their life.

[Karyl Scrivener]

Dear Christy,
As the grandma of two Asbergers kids, my heart is with you. My granddaughter is 19 and much more severely affected than my grandson. I watch my son and daughter in law, and I am in awe of their patience, their determination to fight for every benefit for their kids, and I see that so clearly in you and Nick. Keep writing. Not only is it of benefit to us who read what you have to say, but it is a worthwhile outlet to you to express the frustration but also the love and hope you have for your Elias. Olive will watch and learn what it is to be a compassionate loving person from you and Nick, which is all to the good, even if right now she doesn't seem to undertand and it seems an "uphill" battle. All of us who have watched you and Nick with your family send you all of the positive energy we can to help you along the way.

[Julie A]

I too thank you for writing (and everything is always quite well written I must say). I teach an Early Childhood special education classroom and was counting this week that in the past few years I've had 5 students who were premies, 4 of which had g-tubes, 3 of which were visually impaired, 2 with physical impairments, all with sensory issues and some of whom ended up with an Autism certification but all of whom had ASD characteristics. You are doing a wonderful job with Elias and I was so happy to hear that he got a fun, stress free night and you all had some fun too.
In regards to Olive, I also wondered if you had ever heard of Dr. Gesell or read his child development books? They are old and sexist and awful in many ways due to the examples but if you can get past that and just read the information on the different developmental cycles kids go through they have been so helpful for my partner and I. It's basically about equilibrium and disequilibrium but what I appreciate most are the little tips about things and tricks to do to get kids out of their funks. The books are done by age and are pretty inexpensive. They have mostly helped me learn the mantra "this won't last forever, this won't last forever".
Julie

[Lee]

There is an excellent book, 'The Reason I Jump, written by Naoki Higashida. He is a non-verbal Autistic teenager who communicates thru typing and this memoir of his thoughts and feelings really gives an even greater understanding of our special boys.

[Greta]

That outward and inward question of whether parenthood ever will get easier dances with the years that pass, taunting us with affirmation that is comforting, yet tainted by age. People make it through. They do. I see them everywhere. Some brilliant, and others beaten down.

Then I remember that they, my children, are on their own journey. I am only a part of it. They will grow. I don't know what's in store for them. I can only give them love and then...let go.

Your supreme gifts are love and patience. In all that you write so honestly...all I witness is love and patience. Somehow they will make it, amidst all the chaos, and perhaps all the stronger for it, and they will flourish. And despite breaking us, we somehow become even more whole than we were before being split wide open to life's elements, all because of these children.

[Christy]

I have the most articulate, thoughtful, loving readers who always floor me with your comments. Even if I don't reply nearly as quickly as i should. I read every word. at least once if not two or three times.

Lee, I too recently read the Reason I Jump and now Nick is reading it. So much insight in that short book I am almost ready to read it again. I fond myself repeating parts of it to anyone who would listen and have recommended it to staff at Elias's school.

Julie, I do not know Dr. Gissel but thanks for the tip, I could us some regular development reminders and ideas on how to survive some of the more challenging stages.

s.e. we will remember to throw in headphones/ipad at our next sensory-filled outing. And yes, he is pretty much done at the end of a school day and especially a full week.

Kate, Karyl, Greta, love to you all, thanks!

[Stacey]

We can help sometimes too, just call, it never hurts to ask! I should offer more too!

[Christy]

Thanks Stacey, you know I will:)