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.
I so relate. My son seems to be great and I’m sure this will be the year he’ll lose the diagnosis and then kaboom. It’s so frustrating and difficult to know what causes the set backs. Back to basics cut out everything new. But how is a person suppose to live like that – not me, I’ll do it but how can I expect him to go into the world and limit himself when he has no real immediate reaction. Most people just have to worry about keeping their kids away from drugs. And, we’ve got the not wanting help thing too. And he’s not anti-social so I worry that he’ll be so lonely and anxious about pushing all these people away. And, then, at my last moment (or a few after) my own tears, he’ll do something amazing – hello spontaneous elaborate real imaginary play and I’ll renew my belief that there is a place in this world for my guy and everything is coming together.
Honestly, sometimes I stop reading this blog for a few days when my guy is having a bad spell because Riley sounds like she’s doing so well that I feel jealous. I think, what’s this woman worried about. Riley sounds like a genius. She’ll find her niche and her happiness. It seems so clear to me. But I know that dark hour is so dark but perhaps today will be amazing for her too. Warm thoughts for you today.
Gail C.
I feel you. Things are unsettled here too. With me, with the Roc, lots of questions, not many answers.
Hoping you had a nice cup of tea and then were able to get some sleep.
Hugs.
Could be the phenols but I’m betting it’s being compounded by the sugars. They are simpler and faster-acting than if she ate an apple and drank water with it (same effects on constipation, BTW). The sugars can actually back-fire in that too much causes the body to excrete the water in the urine instead of drawing it into the intestines to help with healthy stools.
Having spent, literally, years, trying to debug Nik’s GI stuff (and, hopefully, hitting on what works to keep him comfortable), I’d put my money on the juice. All things in moderation, right? Except the swearing. I do it liberally, too! 😉
Sending love, prayers, thoughts of health and equilibrium for Riley and for you. And an extra measure of being gentle with yourself, ok?
I love it when you swear.
I hate that you feel bad enough to swear.
Love you. Hope things turn around NOW.
xo
I feel your rage, your frustration, your desperation… so palpable.
Apples/Apple juice are the devil at my house. Yesterday I got Pip back and the other mother had put a red delicious in his lunch AND a lollipop (natural, organic, and loaded with phenols). The cheeks were the dead give away.
Have you tried Epsom Salt baths… they are genius when dealing with phenol overload.
to you and Riley.
I am thinking of you, thinking of Riley.
xoxo
ohhh I so get it….
I don’t give a fuck about swearing.
In fact, I find it quite cathartic.
Swear away.
For us, it’s the goddamn sugar.
Miss M regulates HERSELF and tells me what makes her feel funny, or anxious, or spacey.
This is what she swears:
1. Too much sugar, especially juice.
2. More water, more water.
3. Less simple carbs, more complex. She usually limits her bread, crackers, etc. and opts for Soy chips, fruit, and nuts. Carbs make her feel “fuzzy”
4. Keeps it mostly vegetarian, with some Salmon and free-range chicken.
5. Processed food makes her feel spacey.
Hope that helps. What does Riley think?
Hang in there!
P.S. My friend Gayle told me about this article re: the benefits of swearing:
http://www.time.com/time/health/article/0,8599,1910691,00.html
With everything that Riley is already dealing with, puberty may be raising it’s difficult head!
I have no doubt that you will figure it all out.
In the meantime, swearing offers the gift of adrenaline, and the release of anger.
Using the word~Fucking~ during an IEP for my son a few years ago, changed the course of his educational program for the better.
Swear away!
First, i think this is my first comment on your blog, but i’ve been reading ever since ya’ll got Jingle.
second, my little guy has been having a super hard time lately, too, with temper and behaviors off the charts. We’ve about tracked it down to seasonal allergies increasing his histamines.
could she be having allergy stuff?
Right now, I am holding a vision of you at peace and feeling ease.
In a minute, I will hold a vision of Riley, joyous and calm.
I am holding you both across the miles.
Love.
I was just reading something about phenols and kids with autism who were sensitive to them last night. That could be it. Have you ever read the book “Unraveling the Mystery of Autism” by Karyn Serrousi, it talks a lot about how foods like gluten, casein and for some kids, phenols, are responsible for a lot of behavior problems in autism. Also yeast, a lot of kids have been helped by Nystatin apparently.
Does she get therapy to help with her self esteem issues?
Best of luck.
Also is there any way to put herin a class with other disabled kids who need assistance so that she can see that she is not the only one and that stops being such an issue? In fact, if the other kids in her class were say substantially more disabled then her, and she took on the role of helping THEM, instead of always having to be helped herself, it might substantially increase her self esteem. Or it might backfire, but what do you think? Being able to help others is an amazing self esteem booster.
I’m so sorry Michelle. I love the swearing. Hate that you’re hurting. Trust this too will pass – hopefully with the apple juice. Love.
Who doesn’t lose it now and then?
Glad the next day was better.
Holding an image of a hug for you for future times…
Swearing works for me, too. (You are my human–to quote Carrie.)
I have been nipping in to catch your blog now and again. I, too, have a child on the spectrum. Phenols suck. We have had some luck with Houston Nutraceutical’s enzymes. We are all in this mess together and it seems when one thing ends, another begins! I have read your blog entries and nod and smile or sniffle in complete empathy. We know. We understand. And a whole shitload of us swear like sailors. Think of it as an auditory-oral sensory compensetory strategy. Yep. That’s it.
You are my human. I love you, Michelle. I love your swearing. I love your honesty. I love your openness. I love you and everything about you.
Period.
I have no advice, but swear away, cause sometimes, it helps me too. I have no idea what we will do next June, the end of school, the end of anything remotely social for Margs. I hate that she’s 20 and weighs more than anyone here, and if she is in a mood, well, you just can’t remove that body. I always have to remember that its her world, and its not fair to make her like us. I think there is too much normalizing in our society, and not enough celebrating. So what if she doesn’t go to clay for a while, you said it was her choice, I’d make darn sure its her choice. You are homeschooling, she’s smarter than heck, let her veg if she needs to. And you are smarter than heck, for thinking about the Apple Juice. If only I had that small amount of energy.
I hate this for you, but think about how much bigger and better of a person you are because of it. I would give you a big hug, a large glass of wine, and some long coversation, or just a funny movie.
You are loved.