Emotional roller coaster week for Riley. She’s still not quite back to her baseline. So much screaming.
It feels like the family is holding on by a thread. Actually, Seth is seeming quite okay, but he’s gone a lot at school. He’s begging to be homeschooled next year too, but man little buddy, you might just need the break.
Riley’s cello teacher finally came out and said it; she doesn’t feel qualified to teach her. She thinks a different instrument would be better. Like piano. She’s taught cello for decades, and decades, but she can’t teach my girl. I feel like laughing one of those crazy laughs, one that might turn into a cry, but just hangs on maniacally instead.
So many people think we are making a big deal out of nothing with this kid. Let her be! She’s FINE! She’ll be FINE! You hover! I just don’t seeee it?
It’s the teachers who get it though. The teachers understand what we are dealing with. The slightest bit of constructive criticism is cause for self flagellation. This week at cello she had three meltdowns (in a half hour) and crawled under a piano to hide. All because the teacher was making minor adjustments regarding her bow grip and finger placement. In a kind voice.
At clay class today, Todd (he had the pleasure, since he was off work) had to take her out in the hall three different times. The last time, as he was trying to talk her off the cliff, out of the corner of his eye, he noted Jingle starting to squat. She proceeded to have diarrhea right there in the hall.
Insert Todd’s maniacal laugh.
The good news is, it jolted Riley out of her meltdown. The bad news is, there wasn’t a paper towel on the premises, so Todd had to make several trips down a long hallway to a bathroom and sop it up with toilet paper.
Three cheers for Todd.
Earlier in the week, at a local park, Riley was trying to climb and it was not a good climbing day. She was on the play structure screaming, and we were trying to give her space to let her work it through (but that never quite happened). It was unseasonably cold. I was shivering and Todd said…, wait for it…
“I’m freezing my yippee off.”
A new term. Folks, this is what happens when you suppress your God given drive to swear. Let this be a warning.
And another HT anecdote, just to cheer me up from the cello bomb, is this: At the end of church service the congregation joins hands in a circle and sings Let There Be Peace On Earth (and let it begin with me…). Well,Todd is really only used to holding hands with me or the kids, and he absentmindedly, inadvertently locked fingers with the grown man next to him. It took a couple of beats, but this suddenly felt very uncomfortable, and he had to rather awkwardly extract his digits and switch to the regular fingers/palm hand holding position. He told me about the whole fiasco later.
I don’t know why I find this so funny, but I do. There is a hand holding etiquette, no? I wouldn’t be locking fingers with just anyone, that’s for sure.
“You’re not writing about yippee, are you?” he asks as he sees me chuckling and tap tap tapping on the keyboard. I’ve been threatening to out yippee all week.
“Not only that,” I say.
He pauses at the bottom of the steps, sighs, and says,
“Write whatever you want if it gets you smiling again.”
Then, he turns and walks up the steps toward bed.
I recently joined a Yahoo group for Moms of Asperger Girls. One of the mothers who posts is a blogger named Misty and I just saw this video on her website. I don’t know when it came out? Somehow it slipped past my radar.
Of course I looked it up to view the whole episode, and I am sitting here teary, in a heap of tissues. I don’t know. It just really touches me someone cared enough to research, and write this episode and others cared enough to put it together. It is sometimes easy to believe the world at large doesn’t give a damn about our kids. Disrespectful pediatricians, insurance companies that won’t cover anything, school districts that don’t get it, the list goes on and on.
For people to go out of their way to teach other children about kids with Asperger’s and what they go through. Well, it’s just…hand me another tissue please.
I am filled with appreciation.
To see the full episode click here.
Thank you Misty.
Thank you PBS.
Yesterday at Girls on the Run the lesson was about being assertive. We practiced using language to get our message across if someone is bothering us. Careful language, no blaming. No “you always…!” Or “you never!” No yelling. No ignoring ’til you lose your cool and explode. This is the template:
I would like for you to…
Every girl had several chances to practice out loud in the group, situations they deal with in real life, using the assertive lingo.
The following is one of Riley’s. I found it especially funny because she never qualified who she was referring to in the exercise.
I feel annoyed
When you pretend I’m a horse
Because it’s painful
I would like for you to get off me
Later at home, she repeated the exercise with Seth, who duly noted her assertions.
I got rid of my ad.
You see, in order to have it, I had to squish and distort my header picture, because the ads had to be right up at the top. Every time I looked at it,every time,it irritated me. The enforced Blogher blog roll bugged me too. It was takin’ up too much space, man. For me, the itty-bitty amount of cha-ching wasn’t worth it. To each her own, but I feel like I just took off a too tight pair of jeans. No figurative camel toes on Full Soul Ahead. All I’m sayin.’
We have not seen her this excited since the Rolie Polie Olie obsession of 2002.
It’s weird, because she saw “The Squeakquel” movie in January, but the *love* only started over the last few weeks, after I bought the CD for the kids to enjoy while I was away.
Personally, I think it’s the boy/girl thing happening with the Chipettes that has her heart a flutter. She’s lookin’ at Alvin, the way I looked at Fonzie and Richie, when they were dating Laverne & Shirley.
It’s actually kind of sweet.
As far as crushes go, this one seems pretty benign.
Can she stay almost ten forever?
No phenols in 24 hours and an extra long soak in epsom salts and Riley is a new person today.
Happy. Playing. So engaged, dancing to Alvin & the Chipmonks in her room.
Not one tear. Not one scream today.
Trying not to beat myself up for dropping the ball with the phenols. Trying not to cringe imagining certain people reading my last profanity laden post. Not taking it down though because seriously, that’s what it’s like sometimes. I try to stay positive, but I’m only ever posting a mere fraction of our lives. Sometimes it is just a lot to deal with.
I finally went to bed at 5:30 AM and slept ’til 10:00AM. When I woke, Todd came up to greet me, hugged me. He’d read it,
“You got the poison out, huh?”
Yes. That’s exactly it.
Spent the afternoon with Seth planning a mother/son overnight for next weekend. He is so excited. We really need some one on one. We’re going to an indoor water park. I wanted camping, but he got to pick. He promises me, “We’ll camp next time.”
Thanks so much for your kind comments and loving thoughts. Have a good weekend everyone.
1:48 AM and I’m up because I need a fucking cup of tea. It’s a crutch in times of stress. Not the tea, the swearing.
Wiped out, I went to bed at 10:00PM and tried to sleep. It didn’t take, because my baby girl is having a really hard go of it and I’m losing faith. My heart aches.
Todd worked late, came in to bed I don’t know around 12:30? 1:00?
He’s the only one who truly understands and I want to turn to him but I equally don’t want to, a million reasons why. A few sobs on his chest and I push him away.
“I’m so sorry,” he says.
“If we really create our own reality, there is something seriously wrong with me,” I say.
He can’t help but laugh. I don’t.
I tell him my darkest thoughts and he does not judge.
Visions of her future that do not look good at all. Twisted wishes of her dying before us, because the idea of my precious girl winding up living in a psychiatric ward or on the streets is unbearable to me.
We go over the last couple of weeks. What’s different? Why is she so out of her mind?
Another horrid day at clay class. They are making Dr. Seuss houses and she had poured over her books all week, planning it in her head. She wanted to be there. She wanted to do it. No one is forcing Riley to go to fucking clay class. She flipped out attempting to roll out her first slab. She isn’t coordinated enough to do it easily on her own, but she refuses help. She didn’t want to look like a baby. Then she had a meltdown. Same story, different day.
It’s a small homeschool class, just five other kids, sweet, sweet kids, who are kind and understanding but the blood curdling screaming was starting to upset them. They were cringing. It wouldn’t stop. I took her in the hall, and she couldn’t stop. I tried to take her down the hall, away from the class and she fought me.
When she was tiny you could pick her up and remove her. Now, she is up to my chin. I resorted to dragging her by the arm, kicking and screaming down the hall, and Jingle did not like it. She BARKED furiously at me. She thought I was hurting Riley.
In a brilliant grasp of sarcasm mid-meltdown Riley screamed,
“WHY DON’T YOU JUST PUT A DIAPER ON ME! PUT ME IN MY CRIB! I’M NOTHING BUT A BIG BABY! I’M THE ONLY ONE WHO NEEDS HELP!”
I am so sick of having to be the room parent. The coach. The chaperon. Always there. Talking her off the ledge. She doesn’t want to need me and frankly, I could fucking do without it too Riley.
Could it be the phenols? Every couple of years we get kicked in the ass with phenols. How is it I forget?
Phenols are those wonderfully healthy anti-oxidant good for your heart things found in lots of fruits, tomato sauce, red wine, etc. She does not tolerate them well if taken in high doses over time.
She’s been chugging apple juice.
The giant two gallon jug of apple juice from Whole Foods we bought a couple of weeks ago was so good we bought another the next week. To help keep her hydrated, you know, after the recent severe ’bout of constipation.
Could it be, like Dr. Seuss’s The Cat in the Hat Comes Back, we’ve one giant mess creating another, bigger one?
I wait ’til his first snores, then slink off downstairs for my tea.
While it steeps, I pour the fucking apple juice down the drain.
Angelo Zuccolo was born into a family of actors, poets, sculptors, painters and singers. Within this context, the enchantment and romance of a world filled with sensory, sensuous and sensual poetry were present from sunrise to sunset. His insights into the flavor and spice of the human heart simmer with the delicate aroma of love both found and often lost. Join him for a very special and romantic event.
Friday, April 23, at 7pm, at RiverRead Books on Court Street in Binghamton, Angelo Zuccolo will be reading/performing from his books of poetry.
If you are in the Binghamton area, do not miss this wonderful (and free) event.
This event was scheduled in February, but got postponed due to a snow storm.
We went to a new age expo over the weekend. The kids saw a little picture taking/aura reading booth and wanted to have theirs read. I post these not because I take great stock in aura reading, (especially from a picture booth). I post because Seth’s picture has brought me so much joy, and if I put up his picture, I have to post Riley’s too.
I promise we did not get our children stoned before the event.
The print outs which came with the pictures basically said Riley is very creative and Seth is extremely “connected.”
So there you have it.
Now you know as much as I do.
Seth has the munchies.
Just because someone doesn’t do something I would like them to do, does not make them wrong.
Just because I feel sad, does not make them wrong.
When I make them wrong I merely feel worse, because I get kicked out of alignment.
That’s all pain is.
Feeling separate from who we really are.
If we knew how loved and adored we are. How supported we are by All That Is. How perfect we are in our messy, imperfect expansion. If we knew our value, our uncomfortable emotions could not last long. They would be springboards, causing us to move toward improved situations.
Uncomfortable emotions are not the enemy.
What if we talked to them?
“Thank you sadness, I know you are attempting to tell me something important. I’m willing to sit with you a moment, and listen to what you are saying.”
No one need be wrong, for me to be okay.
Even my sadness isn’t wrong. She’s a wise friend, who maybe tells me what I don’t want to hear, but what I need to know.
Everything is unfolding as it should be.
All is well.
One of the best books on dealing with challenging kids I’ve ever read was Dr. Ross Green’s The Explosive Child. It changed so much for us. Dr. Green has a radio talk show on Tuesdays and takes questions on how to help your easily frustrated child do well. The shows are archived so you can take it in at your convenience.
If you are moved to do so, give it a listen.
If your child has flexibility issues, I highly recommend reading the book. And remember, as Dr. Green says, (paraphrased) when you are dealing with an inflexible person, it is asking for disaster to match their inflexibility with your own.
One evening on the Caribbean cruise, I met Richard. He’s a singer.
It was just before the karaoke show, (which I never would have participated in but enjoyed watching) and we discussed my public singing phobia. He used to have it too, and overcame it. He said you have to really want it. I said, I didn’t think I really wanted it. I said I didn’t have confidence what I had to offer, was really a gift to those who might be listening.
He said many times, if you just do it, the talent will come later. He said, he thought it was interesting I was in two choirs but afraid to sing.
I said, never mind.
He said, The Beatles weren’t initially all that talented, but became genius.
Goaded by Diana Leigh(another singing sensation) Richard brought his guitar and entertained us as we waited to get into the Abraham seminar one morning. The two of them got everyone singing. It was fun. Diana says it is a shame we have so many hang-ups about singing. She says in other cultures, people don’t worry about it. They just sing. It isn’t judged. Of course that’s easy for her to say because she is an amazing singer.
The moral of the story is, just singing is enough. It doesn’t have to be perfect. I’ll keep telling myself that.
Here are some videos of Richard singing. He’s got his own channel on You Tube.
His music is so much fun! Enjoy!
Check out Richard’s website here!
He’s recently kicked me, and punched me in the head.
The other night, he got in late, and I was already blissfully asleep. I roused a little when I felt him get into bed, and began to scoot backward toward him to cuddle up. At the exact moment I scooted, he swung his knee forward, delivering a solid blow to my left flank, delivering a wicked charlie horse…this when I was still half asleep.
When I howled in pain, he proceeded to laugh. But not just any laugh. You see, his mouth was taped. So the laugh was all “pltghwwwt-hem-hem-hemplugfttt.”
My butt hurt for two days.
He has yet to apologize.
In fact, in a classic case of blaming the victim, he accuses me of “scooting too forcefully.”
A few nights later, we were lying in bed, talking before turning out the light. He was lying on his back, right forearm resting on his forehead. He turned to the left, in response to something I said, and brought the arm with him, misjudging how close I actually was (or so he says) and clocked me in the side of the head with his fist.
Again with the laughter, although this time no tape.
Bed should be a safe place, don’t you think?
Is that too much to ask?
Last week was the first day in a new session of clay class after spring break. Riley had a hard time again. The start of anything new is a trigger for her. The clay was wet, and it stuck to her rolling pin. She didn’t want help, because she didn’t want to be treated “like a baby.” She ran from the room, screaming.
Jingle was with us. Riley would pet her and start to calm down, only to escalate again over fear of “falling behind” due to being out in the hall, dealing with her strong feelings.
It went around and around.
Today at Girls on the Run (yes we’re in week eight of a new session) Riley had a hard time. In a lesson about body image, the girls drew outlines of each other on the blacktop with chalk, but her chalk didn’t show up because it was too dark. And she was uncomfortable because it was too hot, and the sun was too bright, and then she knelt in a wad of gum, and imagine the germs! She ran away from the group screaming several times. Then she became upset because she hadn’t done as many laps as everyone else, and you know the drill.
Around and around.
Both times, last week and today, when she was melting, I sat with my daughter, not close enough to hover, and let her be. I didn’t try to persuade her to go back.
She was baffled by my silence. In between her fretting and sobs she asked,
“Mom are you mad at me?”
“No Dolly, I’m not,” I assured her.
Both times, last week and today, as she was going around and around with herself, a song was going around and around in my head like a mantra.
It’s a Rickie Byars song we sing at church, led by our music director, Kathleen.
Ricky Byars Beckwith, is the musician leading the Great Lakes Unity Music Conference next month here in Cleveland(see my blog roll to the right for info on that).
Oh let me love in a wholly holy way.
Oh let me learn, from all the ways I fail.
Oh let me walk, each day a little kinder.
Oh let me walk, each day a little wiser.
Oh let me live in a wholly holy way.
Oh let me love in a wholly holy way.
Fill in the verb.
Walk, listen, love, live, soothe, speak,write,sing.
Let me do it in a wholly holy way.
Oh let me mother in a wholly holy way.
And I did.
I’m happy to report both times, last week and today,
Parents of kids with special needs get this line all the time. I personally don’t think God is some wise old dude in the sky, doling out disabilities based on parental strength. Often it seems people use this quote because they don’t know what to say or do, and they feel helpless. Or worse, it is a way of washing their hands of the situation. God did it. Who can argue?
If you are ever thinking about letting that tired old line roll off your tongue, here is an alternative to try, which I guarantee will go over better…
“How ’bout I baby-sit for a couple of hours?”
Even if the parents can’t let go of their white knuckle grip and let you, they’ll remember your kindness.
Anyhoo. Windsong, Cleveland’s feminist chorus, is lucky enough to have a very talented composer in our midst, and our director Karen Weaver commissioned her to write a song specifically for the 30th anniversary of the group. It is a gorgeous ballad called I Have Learned(Not all roses are red).
These are some of the lyrics, in blue, written by Jan C. Snow:
“I have learned, in my years, sometimes we are given more than we can bear.
The trick is in knowing what to set down.
-it’s as much about balance as strength.”
And that’s just it, isn’t it? There are some things we just have to set down. I’ve had to set down any idea of a career for a while. My child has needed me home. I’ve set down worrying about what some relatives think of me. The burden was too heavy to carry. I’ve set down my old ideas about parenting, education, health care & medicine, forgiveness, friendship, marriage.
“The over and under and over and under of loss and love.”
So many times I’ve struggled against what is, wishing for things to be different. But while I’ve been home, I’ve had the most wonderful opportunity to delve into matters of the soul. While I must be available, I’m not needed every minute. This has given me time to read and write and look deep within myself at areas which needed to be healed, and are still healing. What once felt like a loss has actually been a gain.
“And I know a wish on a star, might not make it so, but it raises our gaze to the sky.”
Life is different than I ever expected it would be,and it continues to change all the time.
“I have learned, not all roses are red. Not all violets are blue. “
It is rich, and it is blessed. And some days it does feel like more than I can bear. Especially if I look out too far ahead.
And everyone has something. There is a dear sweet woman in the chorus whose husband recently became paralyzed in an accident. Maybe you are caring for aging parents. Perhaps you are going through a divorce. Perhaps you have health issues, or financial trouble, or abuse in your past. Maybe addiction weaves its way into your life. Maybe you are lonely. Our hearts are tender things.
“I have learned, not all roses are red. Not all violets are blue.”
“And yet, you see we bloom,
Sometimes it seems like more than we can handle.
It’s okay to set some things down.
Be gentle with yourself.
Recently, I spent an evening in Peurto Rico with two love birds.
Betsy is mom to three children, one of whom is a teenage boy with autism. Her husband John is a physician who uses holistic biomedical therapies to help kids on the spectrum obtain optimum health. They live in Wisconsin. We were celebrating Betsy’s birthday, the day the picture above was taken.
Dr. John spends time early in the morning visualizing each patient he will be seeing, in their full perfection. Betsy oversees the day-to-day operations of their practice, Elementals Living and organizes national conferences and retreats on wellness-related issues. She’s also just finished a book on solutions for picky eating, and has a resume a mile long with one impressive accomplishment after the other! I’ll be writing more about her picky eating book here soon.
It is wonderful to meet another autism mom, who understands and seriously applies Law of Attraction principles to her life. I have so enjoyed getting to know her better over the last several months and to finally meet her in person on the cruise.
If you are looking for a bio-med doc in the Wisconsin area, John might be your guy.
They also run a store out of their practice where you can buy all kinds of supplements, holistic remedies, books, special foods for special diets, etc.
Do check it out!
P.S. I’ve put the store on my blog roll for future reference.