Monthly Archives: November 2014

Sundays

The history of my super atypical family at church is long and storied, though not really in a good way. After ten years of extreme behavior problems, failed attempts at attending Primary, and multiple rejected special helpers, Jack currently doesn’t go to church.

While some likely wouldn’t be, we are at peace with this arrangement.

Here is what we know: Jack struggles at church. His parents struggle to handle him at church. Teachers and helpers have struggled with Jack at church. But (and this is the crux of it) Jack is unaccountable and really doesn’t need church like the rest of us. Frankly, we are hoping he will sneak us into heaven, since that is where he is going.

I still have hope that at some point, Jack’s development and behaviors will allow him to be at church in a positive way. Meanwhile, he has a sitter during sacrament meeting so we can attend as a family, and Dutch and I take turns staying with him during Sunday school and priesthood/relief society.

Some people might feel that we aren’t trying hard enough to help Jack succeed on Sundays like typical children. I used to wonder this myself, though I honestly didn’t know how we could possibly try any harder than we were.

The funny thing about special needs parenting is that even when you’ve exhausted yourself in every way as you attempt to help your child function more normally, you always wonder if you could do more.

Anyway, I’m glad that God knows our struggle and understands Jack and our family. I don’t have to explain it to Him.

If you want to read the most delightfully honest and lovely story of another family with another type of special needs child, check out my darling friend Lacey’s recent blog post. Here she writes of Sabbath heartbreak and disaster, but also sweetness and miracles.

Jack and Emme are children of God too, differences notwithstanding.

Just Enough

This week we did four doctor’s appointments, an ER visit, and a hospital stay. We did an adjustment on Jack’s anti-psychotic drug and Charlie’s anxiety med. Jack launched and then dismantled the fake Christmas tree, after trying to suck off the ornaments with the shop vac. So I cleaned it up and put it away, throwing away all the broken bits. I cried a little.

When I thought about impending Thanksgiving, I cried a lot. I pictured all the dysfunctional things that could and likely would happen on our family trip to the cabin. I thought wistfully about that magical time my whole family watched a whole movie together.

On our drive to the cabin Thanksgiving morning, I cranked up my seat heater, snuggled into my coat and pondered a few things:

1. The ER staff and the hospitalist and nurses who treated us so well and restored Charlie’s ability to breathe.

2. The ENT, who has helped us through our weird ten-year journey with Jack’s cursed ears. He is still helping us and still lending us his optimism.

3. The gastroenterologist. She knows about all the shiz and still smiles at us without pity.

4. The pediatrician, who is a genuine ally.

5. The psychiatrist, who is critical to our family’s ability to function. And she prescribes the meds that save our lives.

I feel that my family is a priority to all these people, that they really care about us. Maybe they make everyone feel this way, who knows.

I was grateful to God for giving us access to some really terrific people to help my children medically and psychologically. Even when things are frightfully hard, He has always given us what we need and who we need to help us keep going.

Abundance can mean having just enough for what’s necessary at any point in time.

IMG_9972.JPG

Lunch

On a day when I sharpened my elbows to shop with the masses for Thanksgiving groceries, held Jack down with the help of three nurses while the ENT poked around in his cursed left ear, and hauled the younger sibs along for the show, I gave myself permission to eat a doughnut for lunch.

It was completely restorative.

Lame Tree? Just Breathe.

It’s not even officially the Christmas season yet, and I’m jaded and burned out over Christmastime.

Tragic violin music plays in the background to this realization.

For Family Night last Monday I had this burst of energy which I channeled into ordering Dutch to get out the (pre-lit, artificial) tree and putting the boys to work at decking it out. One week later, the tree has half of it’s lights working and hodge podge ornaments clustered in the areas where Jack, Charlie, and Truman could reach.

Editor’s note: thirteen year olds are too old and similarly too cool to hang around for much of this sort of thing. I dig it.

Jack has removed the berry garlands in an attempt to suck them into the shop vac.

Our tree looks crappy, stripped and humiliated before it was ever pretty. And I want to take it down. Like, now.

I want it to go away because when I look at it, it sucks a bit of my soul away. That ugly, half-baked tree makes me feel like I’m failing Christmas.

It’s so dumb, it’s practically irrational. But I’ve seen many a post of people’s attractively decorated homes and trees. I see themed trees, trees with matchy/complimentary ornaments, creative handcrafted trees, and trees that change beautifully from year to year based on the whim of the lady of the house in charge of holiday tree planning and execution.

Meanwhile, I’m asking the boys to stop trying to stuff the random, mixed-up ornaments into the gas fireplace louvres and to please, please leave the tree lights alone. Plugged in. Lighted. Seriously guys. Stop touching the cords. Now. Stop touching them now.

This tree drama is not worth it. I can’t handle it.

We passed a lovely holiday tree, swathed in purple ribbons and balls for epilepsy awareness this weekend as Charlie was wheeled from the children’s hospital ER to his room on the fourth floor.

Watching my six-year-old’s chest cave in with every labored, croupy breath, I didn’t care about the lamest tree that ever was back at home. I just cared that thanks to epinephrine breathing treatments and steroids, Charlie can inhale again without wheezing, chest retractions, and his lips turning blue.

I still feel an overwhelming urge to place my dilapidated tree on the curb with a Free! sign on it. But our stay in room 431 convinced me that some of the pseudo-important things which consume my energy are ephemeral. Other things, like being with my sick, anxious little boy on the autism spectrum during his first hospital stay, mean infinitely more.

I’m ready to do away with the trimmings and trappings of the holidays. I want to keep the spirit of peace, giving, and love. Good will to all can stay. The fake tree needs to go.

IMG_9846-0.JPG

And someday, I want this tree instead:

IMG_9812.JPG

Christmas List

All I want for Christmas is peace, and the strength to handle my challenges.

And for Jack to stop trying to feed the Christmas garlands into the shop vac.

That’s it.

I’m Over It

I am officially over it.

Not everything, just some things. It’s good to know it and say it.

*First, purses and high heels.*

No thanks.

Currently I carry a backpack. This fact makes me want to toss my hair and laugh maniacally. HAHAHAHAHA! Take that, Kate Spade! I’m like a student again. An old mom student with my grey knapsack containing a wallet, phone, keys, hand sanitizer, Kleenex, spectacles, and lots and lots of gum to assuage the wildebeests when we have to wait in line for something.

Also, flats. You are my friend. I’m taller than most dudes when I wear heels, so why?

*Second, I’m over being embarrassed by my boys’ behavior.*

Today Jack freaked out when I tried to put a jacket on him as he walked out the door for school. To give me the what for, he picked up the last remaining pumpkin on the porch—the really bumpy, warty one—and threw it down the steps. The stem broke off, the pumpkin rolled through the dead marigolds in the front yard, and continued rolling into the street and down the hill. I’m not sure how far it traveled in the gutter. Jack’s bus driver and aide and all the kids on the bus watched this happen and I totally couldn’t care less.

Just another Tuesday morning at our house. Watch out for squash, my friends, they sometimes get launched.

*Third, I’m done with the social stigma of mental health issues.*

Mental illness is a real thing you guys, like diabetes and heart disease. It’s not a sign of weakness. It can’t always be treated with diet, exercise, essential oils, and a positive attitude. It usually takes prescription meds, therapy, and a whole lot of support from loved ones.

And even then, it doesn’t go away. This is not for lack of trying. It (hopefully) just gets to point where it can be managed, lived with, handled to some extent. I’m totally over any other approach than this to mental health problems.

It’s just life. And it’s a good adventure.

*And finally, I’ve bid adieu to holiday stress.*

Sorry, but no. I refuse to be stressed about the most wonderful time of the year.

The thing about Thanksgiving and Christmas with special needs children is this: you have to figure out what works for you and do that.

I did away with neighbor gifts and teacher gifts and the friend gifts and the grown-up sibling gifts years ago. Now we stick with Christmas cards. The end.

Life is better when you say sayonara to some things.

When Vacuums Fly

I’m having a hard time writing lately.

I sit down with my iPad, but everything I type feels really whiny or self-indulgent (it’s all about meeeeeeee!) and I just stop because seriously, how annoying.

I’m not sure where to draw the line between honest portrayals of my family and sounding like I’m harping on the hard things. How much is too much honesty? Do people really want to know, or do they want to hear a white bread, rom com type version of special needs parenting? On a related note, are blogs by nature super narcissistic?

It’s okay to talk about hard things if they’re funny. People are okay reading it if I’m laughing about it myself. Sometimes though, I don’t think cleaning up Jack’s daily constitutional off the laundry room floor is all that funny. It’s just irritating. The laundry room, by the way, is RIGHT NEXT TO THE BATHROOM. I mean, COME ON!

“Nobody wants to hear about Charlie’s extreme meltdowns every morning before school,” my inner Debbie Downer drones with a nasally voice.

I’m not sure if I should listen to her.

Also, as I write this, I’m realizing that this kind of sounds like a cry for validation. I don’t intend it to be this way. I’m just writing about the writer’s block. It’s kind of meta and possibly kind of boring.

The only other thing I can come up with right now, though, is a brief, fractured tale of a flying vacuum. Let’s stick with that. It’s more palatable than musing about why writing is currently hard. Here goes:

Our shop vac went missing. We searched the premises for days with no luck. Then, surprise! The neighbors found it in their yard and tossed it over the fence to us. Huzzah, Jack’s banished shop vac triumphantly returned.

We rejoiced and locked it up, out of Jack’s clutches.

Until today. While I spoke with Jack’s DSPD Support Coordinator, Jack buffaloed me into retrieving the shop vac. I acquiesced, because I needed him to leave me alone for ten minutes.

Shannon and I finished our meeting. She left, I started making dinner. I glanced outside to see Jack striding purposefully toward the fence, with the shop vac in his arms and a wicked smile on his face.

“Shizby!” I growled, before bolting out the back door. “Stop, Jack!” I called. He looked at me and moved toward the fence faster.

“No Jack! Stop! Come here right now!” I shouted. Jack smiled an evil smile and kept going.

“Ifyouthrowthatvacuumoverthefencesohelpmeyouwillbesorryyoulittlenaughtypickles!” was the basic gist of the vitriol that sprang from my contorted mouth as I raced down the deck stairs and ran across the lawn.

We may be the source of flying vacuums, but we do offer free entertainment for the neighbors.

As I ran, my mind snatched up a distant memory of something my sister Sarah noticed when she lived in San Francisco. Whenever she was on the street or rode any form of public transit, she played a game which she called Will They Make It?

When people would run to catch the BART or the MUNI or a cable car, Sarah coolly asked herself, “Will they make it?” Ideally, she would’ve recorded every WTMI moment and edited them into a tidy little YouTube video that people everywhere would share on Facebook. Sadly, she only recorded this mental montage in her brain.

“Nojacknojacknojack!” I screamed as I shot across the lawn. Jack reached the fence and abruptly stopped. He turned and handed me the vacuum. I made it. He listened. The prodigal shop vac remained.

According to Sarah, the poor schmucks of Will They Make It usually did NOT make it.

Maybe they should’ve screamed with righteous indignation as they ran. Apparently, it works.

November is the Coolest Month

T.S. Eliot said April is the cruelest month, but he’s wrong. January has that distinction. Let’s not think about that right now though. It’s reasonable to practice winter avoidance behaviors.

November is cool because it’s all tweedy browns and yellows with bare branches and 1970’s harvest gold leaf carpets on the lawns and sidewalks.

The Halloween frenzy is done. All moms everywhere have quietly rejoiced. *Yay*

The gluttony of December isn’t yet here. It’s a space between. Simple. Good.

Two of my children were born in November, along with two of my sisters, a nephew, my father-in-law, and my dad so it’s kind of a charmed month for me. Good things happen in a month like this.

Things like Honey Crisp apples. And the start of the holiday movie season. Pumpkin pie with whipped cream, too, and practicing Christmas songs on the piano.

Putting the children to bed a little earlier because it’s a lot darker makes November nice.

Where October is showy and spectacular, and December is heavily crusted with expectations, November is just here: brown, yellow, cool, overcast, and really okay with being sandwiched between a couple of demanding months.

We get along fine.

IMG_0789-0.JPG

My week in quotes…

1. Behavior therapist, to Charlie: “If your teacher is walking into the school with her arms full of boxes and she can’t open the door, what could you do?”

Charlie, with a look of complete sincerity and innocence: “Block her out?”

2. “I think there should be a rule that everyone in the world should get a standing ovation at least once in their lives.” –August Pullman in Wonder by RJ Palacio.

(I think there should be a rule that everyone in the world should read Wonder by RJ Palacio at least once in their lives. Make sure it’s an edition with the Julian chapter. You won’t be sorry.)

3. “The predicament, then, for women is increasingly not ugliness, but uniformity. And the problem should not be age, but erasure of character. It seems trite, or retro, to remind ourselves that beauty is warmth, conversation, intelligence, and a certain grace or magnetism, too, but it’s true.” –Julia Baird in the The New York Times.

This was in an article about Renee Zellweger’s face. It shouldn’t be old-fashioned to say that beauty comes from kindness, intellect, personality, and a giving heart, but apparently it is waaaay out of fashion, at least in some circles. The things we say and do make us beautiful. Our unique spirits are the beautiful glow. So there.

4. “The best way to make a change is to throw a grenade where you are standing and move forward.” –Robyn Davidson in Tracks.

Dutch and I saw this movie at ye olde Broadway Theatre downtown last weekend. This, in combination with finishing the book Wonder, opened up the top of head and poured a brimming pitcher of inspiration into my brain. There was so much inspiration, I couldn’t even contain it. It trickled out my ears and nose, and left a minty, zingy taste in the back of my throat. It ultimately settled in my lungs, refreshing me with every deep breath.

Seeing this movie was the beautiful draught of inspiration I needed.