Monday, December 31, 2007
Sunday, December 30, 2007
We made an OT room in our basement and worked with Riley for two hours every morning, when she was first diagnosed with "sensory integration dysfunction" at three years old. Then, the act of tipping her head back far enough to drink from a sippy cup threw her into panic. Her OT explained, "to your daughter, that motion feels like a free fall."
Oh. We thought she was being a willful brat. Wanting me to hold the cup for her like a baby with a bottle. When I refused, (I mean after all she was almost three, what would people think?) she started throwing the cup across the room and would wail for 20 minutes.
I lost my temper with her so many times over stuff like this. So much miscommunication. So much hurt. I'd wind up picking her up and tossing her onto her bed in her room (not gently) and slamming the door behind me.
Back then, Riley was so sound sensitive, she would crumble to the floor shrieking if her father sneezed. Her OT likened it to the sensation of someone placing a metal can over her head and beating it with a spoon.
My sweet girl. I'm so sorry. We didn't know.
Bouncing, bouncing on a giant ball. Her on my lap. Baby Seth in the Exersaucer, taking it all in, being ignored. Such a sweet infant he was, the glimpses I remember. Todd and I secretly called him "Easy Baby."
Dragging her all over the floor on a parachute, varying my speed, I willed her to gain trunk strength & balance. Obstacle courses were constructed. She sat on a square scooter holding a jump rope, and I pulled her slowly, working on balance and grip. Two by fours for balance beams, even these were too hard, taking months to accomplish, but accomplish them she did.
Everyday, holding her supine on the ball, Riley screamed in panic.
"I promise baby. I will never drop you. Lean back, reach for the toy."
Stretch Riley, reach for the toy. She worked so hard. It took months but finally my brave girl could lean all the way backward, grabbing a succession of toys without screaming.
After our work I'd rock her slowly on her belly on the ball, singing softly.
"So much, so much. Mommy loves you so much."
Some days I would dread going downstairs to the "playroom." I was so damn tired. She was tired too, but a second session awaited her in the evening.
In the following video, a mother is doing Relational Development Intervention (RDI) exercises. The program is designed to use everyday situations and play to help kids overcome delays in social development.
In the second part of the video the mother is using eye gaze to direct her son as to which pile to toss the laundry into. He has to make eye contact to play the game.
This video touched me deeply, 'ya know, 'cause of the love.
Friday, December 28, 2007
Tonight, the kids were watching the same story on DVD. Todd and I had a nice anniversary dinner of Thai take-out, downstairs. They were upstairs. My plan was to go up for emotional support toward the end.
Walking into the TV room, there sat Riley and Seth. Riley, in the rocker, unphased. Seth, sat criss-cross in the comfy chair, his body trembling, gulping, trying to hold in the explosion of sadness going on inside him.
"What happened?" I asked. It couldn't be over yet, could it?
Riley said, "Oh...Charlotte died."
Seth looked up at me, his face blotchy. He gulped and squeaked out, "I'm okay."
Which broke my heart more? The fact that he had his first emotional experience around death and I wasn't there, in the moment? Or the fact that he was trying to stuff his feelings and be brave?
I scooped him up and sat right back down in the chair.
"Oh, buddy." I said, rubbing his heaving back.
"I'm okay," he squeaked again before losing himself completely, and sobbing into my neck.
Riley studied all this, perplexed.
"She'll probably just take another body Seth." She offered, trying to comfort him.
Shortly after, we put them to bed. Seth's little frame, still doing "triple sighs" even after he fell asleep.
So many thoughts swirl through my mind.
A tiny boy trying his damnedest not to cry.
A little girl some might feel sorry for, who seems to have a better handle on death than the rest of us.
A vision of my young self reading that timeless book.
A quote at the end, about how rare it is to have a good friend who is also a writer.
Stories and anniversaries, and children and love and loss and "humble" and "terrific" and "some pig."
And a vision of my son,
telling his own child,
he knows exactly how she feels.
Thursday, December 27, 2007
Wednesday, December 26, 2007
Yesterday I wound up hiding the Yadda Yaddas, after hours of "warped" fun.
"I'll tell you if you give me a kiss on the cheek and say I'm the best mom ever."
I kneel down for my smooch, and he says, "Best mom." It's the abbreviated version, but it will do.
How many hours can these batteries possibly last?
Tuesday, December 25, 2007
Monday, December 24, 2007
Merry Christmas Mia, Gianna, Bella, Liberty, Max, Adam, Q-man, Fluffy, Wil, Tayler, Miss M., Maddy's boys, and every other precious child on the spectrum, and their siblings.
I believe in you and all that you bring to the world.
Sunday, December 23, 2007
I liked Todd. We worked together. Something was brewing, maybe.
At some point during the movie, I looked at him out of the corner of my eye and thought,
"I want someone like that for my kids."
Now granted, I didn't have any kids. And I didn't mean him. No sir. It's was our first date. And it wasn't even a real date, but....someone like him. Someone kind, and dependable, and funny and smart. Someone with integrity. I thought he'd be a really good dad.
Today at Alvin and the Chipmonks, I looked at him out of the corner of my eye again. This time he shared his popcorn with a pretty little brunette. A blond haired boy sat between us, eating a pretzel.
And I was right.
Friday, December 21, 2007
Thursday, December 20, 2007
Hot Toddy says, "I thought you didn't like Justin Timberlake?"
It's true. I have long felt he was a no-talent Disney prop. That his entourage put on the whole razzle dazzle to cover up a lack of substance. Once, on Saturday Night Live, he performed at a keyboard, with a huge ensemble. He was playing the same few chords over and over, pretending to be Stevie Wonder...but not.
I shook my head in amazement.
Then Amber, sweet Amber....posted a link to Dick in a Box.
I'd been in a funk and it was the first thing to make me laugh in days. In it, Justin Timberlake is doing a parody of himself. All the hip-hop gestures. Dance steps. The whole formula. Hysterical.
To me it was his acknowledgement of how silly "what he does" is.
So when HT said, "I thought you didn't like Justin Timberlake."
My reply was, "I do now."
And, it has nothing to do with what I want for Christmas.
When Todd's Gramma's died, everyone was pouring over the family photo albums, deciding which pictures to put up on the display board at the funeral home.
In every shot that included an ex-girlfriend, Todd's mom referred to the girl as "Cupcake."
"Oh, there's Timmy and Cupcake."
"Oh...here's one of your father." She'd say.
"Who's that girl he's with?" someone asked.
"Oh, that's Cupcake."
We even found one of his young grampa all dressed up for a formal, with a Cupcake. The photo had to be around 70 years old.
Cupcake isn't being said condescendingly. It's sweet.
Like all cupcakes, they have their place.
I like the expression.
The O'Neils have a million of 'em.
Wednesday, December 19, 2007
Lisa Oz, (married to the show's host, Dr. Memhet Oz) got into a little debate with Dr. Oz's sidekick, Dr. Mike Roizen...about immunizations.
It was a beautiful thing.
Lisa was making a point that our bodies weren't designed to have diseases "injected" into us.
Dr. Roizen tried to poo-poo her, but she didn't back down.
He basically said it would be beneficial if everyone in the whole world got a flu shot. Lisa shot back that it would be very beneficial for Big Pharma. She also said they have not ruled out a link between autism and vaccines, and that it's all going to come out eventually.
Dr. Roizen did recommend asking for thimerisol (mercury) free flu shots, which is progress. A year or two ago, that whole notion was scoffed at (it's still in flu shots BTW).
Lisa Oz is married to one of the most influential doctors of our time.
And her mind is open.
I've long thought Dr. Oz had his head on straight and his heart intact.
Behind every great man, I tell ya.
Tuesday, December 18, 2007
Monday, December 17, 2007
Another mom comes huffing in from the ice. She goes over to the rental counter and gets some skates. She sits down at my table to put them on, and says,
"You get to sit here without a care in the world. I have to lace up and get out there because my daughter is crying."
This woman is a mom to two beautiful, typical little girls.
Oh no she didn't.
"Actually, I'm preparing for a presentation on autism that I have to give to my daughter's teachers. I have never, not once, in the last seven years been able to sit back without a care in the world."
"I guess I'll shut up now." She says, lacing up her skates.
I guess you will.
Sunday, December 16, 2007
"Yeah." she said. (She totally does).
"Well did you know her brain works a lot like yours?"
"Yeah. She's very smart. Really sweet. A wonderful child. And sometimes she has a hard time. Sometimes she even gets upset and rips up her papers at school."
Riley's eyes go big and she sucks in her breath.
"Does she sometimes even scream?"
"I bet she does." I say.
Riley smiles big and takes a chomp of her sliced apple with peanut butter and honey on top.
She ponders this information for a while and then says,
"I'm just so glad she has a brain that works like mine."
It's true. We have not met anyone else like Riley. Most of the kids we've known on the spectrum have been boys(1 in 86 boys is on the spectrum these days), and they are affected much differently. God love 'em but they're usually the worst match for Riley. Too wild. Too little impulse control. Too unpredictable for her to feel secure around.
I need to find more girls with brains like Riley's. I hadn't realized how lonely it must be for her sometimes.
We can't afford San Francisco, but Drama family....I'm telling ya, Cleveland is a nice place to live! Just don't look at the weather today.
Saturday, December 15, 2007
This is the first year since the kids were born that I did not get my Christmas cards out in the mail lickety-split the day after Thanksgiving. Gasp!
Here they sit in a little bag, unaddressed, not yet ready to go.
But let's talk about Riley.
She is having trouble in math. She is a perfectionist. If she does not already know the concept, she gets incredible anxiety and freaks and then gets further behind, creating a snowball effect. With great dramatic flair, she's been ripping up her papers and stomping over to the garbage can during class to dispose of her hard work.
I'm meeting with her teachers on Tuesday in an effort to figure out what is the trigger and what can we do about it. Her teachers thus far have been wonderful, but I do have some residual fear from a couple of past experiences. One where she was kicked out of preschool, and another in which we were told we were STUPID by a principle, (for requesting she be in a grade level appropriate for her academic ability, not a grade behind).
Autism is a "cutting edge" disabilty, blowing the people who normally deal with childhood "issues" out of the water. There are no experts.
I have born the brunt of the blame from people who haven't caught up with autism. I've been judged by family, doctors, educators, nurses, therapists, neighbors, people in line at the grocery store, etc. So when HT blew off my concerns about this upcoming meeting, it kinda sorta set me off. AT&T! I could not get to my google! I have a meeting next week I have to prepare for! It is important! I'm supposed to already know everything! No one is helping me! I'm ripping up my papers and stomping to the garbage in a panic!
If my Christmas cards are late, I hope you'll understand. I'm busy, teaching my "daughter" you don't have to be perfect.
Friday, December 14, 2007
Have you ever felt like stepping out of your life and into another?
People do it. I could just pack a bag, and walk. Happens all the time. "I'm going out for cigarettes." Or in this case, preservative free, sugar free, partially hydrogenated free bread.
We haven't talked in 24 hours. Besides the screaming.
Laying here in the dark, I hear him putting the kids to bed.
If he comes up to talk, we're okay. If he doesn't, we're done.
Such stupid, immature thinking. As if I'd throw away our whole marriage over his failure to guess the "right" action this one night. Come up? Leave her alone? How can he win?
Stupid, immature? Maybe, but it feels real tonight.
As soon as the babies were asleep,
he came up.
HT came up.
Thursday, December 13, 2007
Speaking of which, have you all read Age of Autism? It's a fantastic look into what the mainstream media (owned by Big Pharma and friends) ain't gonna tell you about the autism epidemic. Well written, well edited. Very smart and informative.
God bless us, everyone.
Wednesday, December 12, 2007
Riley waited in line, then turned and ran back toward me at the door.
"Uh-oh." I thought. She doesn't want to go in.
She ran up to me and kissed me on the cheek.
She'd merely forgotton to kiss me good-bye.
Remember when she first started doing that?
Tuesday, December 11, 2007
It escalated into a bunch of other resentments and was still simmering this morning when we got into it again. This time he was screaming back at me.
The thing is, we don't fight. Hardly ever, and not like this.
I don't know what to do with it. For me, fighting seems catastrophic. End of the world. In my mind, the whole thing comes to an abrupt end. Is it ridiculously weak to doubt the strength of a marriage? Or is this how it happens? One day fine, the next day, done. I've got nothing to go on.
But this is us. It can't be that big a deal.
I mean really, can it?
Monday, December 10, 2007
I know, I know, take the laptop into a Wi-Fi cafe yada yada, but that does not work. I've got stuff to do. I write in bits and pieces. All day. I can't cram it into two hours at the coffee shop. Who's going to do the laundry? Who's going to watch my stuff when I need to use the ladies room, repeatedly?
I've hardly been able to read any blogs lately and it is killing me. I miss you all. And soon, later this week, I intend on having full on blog gluttony.
See? My time is up already. Oh well, I've gotta run home to use the bathroom anyway.
Friday, December 07, 2007
The second time he calls, he asks, "How's everything going?"
The third time he calls, "Did you remember to mail your parking ticket?"
The fourth time he calls, I pick up, "Yeah stalker, what can I do for you?"
Not speaking." he says.
If I had a nickel.
Thursday, December 06, 2007
Think snarky realtor.
She's gonna tell us what goes on behind the scenes. Don't be afraid to ask her questions. She lives for stuff like this.
Remember sweet little Winnie, Kevin's girlfriend from The Wonder Years?
And then remember how she shocked everyone with this?
Well, recently she was interviewed by money lady Jean Chatsky on XM radio (Oprah and Friends). She is apparently a math genius and has written a book geared toward stopping young girls from coming down with the "math phobia" that plagues so many of us she people.
In the interview, Winnie, I mean, Danica, was incredibly poised, charming, and oh so smart! Riley is developing a bit of a math phobia, so I'm off to the book store to by me a copy of Math Doesn't Suck. Yeah, that's it, for Riley.
*BTW....AT & T has the most awful customer service. There was clicking and static on our phone line, took them over a week to get out to "fix" it. They were there when we left town for the funeral on Saturday, said they could "fix" it from outside. We returned from NY on Tuesday, and not only was the line not fixed, they screwed up our internet service and now they might come anywhere between two days ago, and the 11th. We look forward to changing providers when we move into the house we are buying next month. Anyhoo....publishing comments and posting will be touch and go til' they "fix" it. I'm at the library right now, nursing my addiction. HT wondered why no one commented on his little note. Darling....you didn't turn on the comments!
Wednesday, December 05, 2007
Monday, December 03, 2007
The following article really got me thinking. Autism is for sure a family issue, but more than that, it is a women's issue. I know some dads are highly involved and God love you, but for the most part moms are doing the research on treatment options and moms are taking care of the kids. My husband is falling on the floor tired on days he's home with the children. He works hard at his job everyday, but 8 hours at the hospital does not quite have the same exhaustive effect on him.
Since men still make more money than women (for the same work) it is mothers who have to give up their careers to care for these (expensive) kids, putting the family at an economic disadvantage now, and putting her in particular jeopardy down the road if the marriage breaks up, which something like 80 percent of marriages do, if autism is involved. People have no idea the pressure (financial and emotional) autism puts on a family.
And another thing, it is the mothers doctors are poo-pooing. I had one pediatrician give me a very hard time, using hostility and scare tactics when I told her I wanted Seth's MMR vaccine in three separate shots spread out over time. When we wound up back in her office two days later with a sick kid (probably something he picked up during his "well" visit) Todd was with me. She didn't utter a word about our immunization choices. Why didn't Todd get to experience the brunt of her battering? I think it has something to do with that which hangs between his legs.
The Age of Autism Article talks about how mothers have been blamed for autism. First, it was believed they caused the condition by being "too cold." Now they are dismissed for being too emotional. Anyhoo....here is a link to the article:
I think it was Clarissa Pinkola Estes's who advised, when someone tells you you're being too emotional, reply with:"Yes, I have well placed emotions. Where are yours?"
And to anyone who wants to treat women, especially autism moms, with anything less than respect, I say, "Up yours."