Tuesday, January 30, 2007
Did I mention? We had a couple of hours to kill before arriving at the retreat, so we went to a hands-on children's museum in Asheville. Riley had a ball. She was very brave. Some exhibits initially scared her, but she tried every single thing.
Out of all the kids there, who do you suppose a photographer picked to photograph for a brochure? That's right. My girl stood there in a hard hat and an orange vest, posing for the camera like she'd done it all her life. (At three, she ran from cameras, shrieking because the flash was too bright).
This whole experience has reinforced how desperately Riley needs a school where social skills are taught as part of the curriculum. Social skills are as important for this child as math or science or English. Yesterday I was researching, and came across what looks like a great school....in NYC.
Speaking of irony?
Monday, January 29, 2007
They are playing.
I am laying low. Eating muffins. Drinking coffee.
Sunday, January 28, 2007
“We don’t like her.”
“What's wrong with that girl?”
“We don’t want to play with her.” Their faces said.
Two sets of bunk beds in our room. All the kids up and down like monkeys.
“Can I climb up on your bed?” she asked.
A girl looked down from the top.
“I don’t really want my bed messed up.” she said, even though the others are all over it.
Girls playing marbles. Riley tries to join the group. She leans down to take a marble and a girl says sternly,
Riley flees the room devastated.
The young man in charge of entertaining the children while the mothers meditate, is silly and delightful. Riley is mesmerized. He plays with puppets and she laughs, her head tipped back in glee. He says they will do a puppet show. He has the kids in stitches, and they keep interrupting him and he never quite gets around to the actual story. The bell rings for the next activity.
Riley screams and cries because her heart was set on an actual puppet show. An actual story. Again, she is devastated. All day long I am putting out fires. My shoulders and stomach in knots, at the Zen Temple.
Riley and Seth have their own little dynamic. At home, they play nicely together most of the time. He "gets" her.
I don’t see what happens at school.
I’ve never had the opportunity to observe her in a situation like this.
Wanting to play.
Not knowing how to fit into a group.
I close my eyes.
The day she got her first set of immunizations, I had what I now feel is a premonition. I was in a complete panic. I felt like an idiot, sobbing and shaking over a stupid set of shots. I didn't know anyone who didn't immunize? I thought "those people" were backward hippies. I was a nurse. I bought the hype. I trusted our government and our doctors. I chocked it up to post partum hormones, shoved my intuition aside, and held my baby down to make it easier for them.
She had an abnormal reaction.
I don't know if I will ever be able to shake the feeling that I did this to her?
A thick tear rolls down my cheek.
I hear it land on my cushion.
Friday, January 26, 2007
Seth will get some quality one on one with his Dad.
I have no idea what to expect but feel strangely calm. I’m going on an adventure with my girl and all is well.
“What’s wrong, buddy?”
His shoulders slump and he looks up at me with the saddest face. His dark eyes a striking contrast to his blond hair.
“I’m having a hard time.” He says. He looks down again and his shoulders droop even further.
“With what? What happened?” I ask, taking a seat on the bathroom stool.
“First,” he sighs big, “you said I was a bad sport.”
Oh God. Did I say he was a bad sport?
Just a couple of hours ago.
He’s at the age where he wants to compete in everything, but if he doesn’t win, he throws a fit. We were in the basement, riding bikes, and he wanted to race, but when I lapped him (here's your visual, me on Riley’s tiny bike, complete with training wheels) he got hysterical.
“Seth, you’re a bad sport.”
I really said it.
“Then my helmet fell off, and when I tried to get it, I tipped over.”
Yes, he did. It's all true.
“Anything else?” I ask.
He shrugs. Taps. Flushes. Washes his hands.
“Seth, you’re not a bad sport, okay? Mommy shouldn't have said that. You’re just little and you're still learning to be a good sport. That’s all. I’m so sorry."
He falls into my arms and we sit like that on the bathroom floor for a long time.
I can’t get the look in his eyes out of my head.
Thursday, January 25, 2007
Ziji is back.
She had some computer issues, but now she's back and the blogosphere is a more beautiful place for her return.
Isn't she beautiful? See, there...that's better.
Welcome back Blair. We missed you!
Wednesday, January 24, 2007
After my shower I came out to check on the boy and he was watching a new program called "Mr. Meaty" which came on after Blue.
I'd never heard of this show, and I must admit I didn't stick around to give it a fair chance, but C'MON! Mr. Meaty?
.....and Mr. Meaty that looks like this?
One word: hypospadias.
It's a medical term. Look it up here.
Tuesday, January 23, 2007
Riley has been in a creative frenzy. She can't get enough of the crayons, pens, pencils. The kids had a snow day yesterday and the monkey above was one of many masterpieces that resulted from all that free time.
I used to watch with sadness as other kids; 3, 4, 5 year olds happily colored away. Riley wouldn't touch the crayons. Her fine motor skills were so poor. At 3 1/2 her hands worked like an 18 month old (according to her occupational therapist). Her intelligence however, was above average. Imagine the frustration?
This time last year. She refused to even pick up a pencil to attempt to write. Today, she wrote the words above without asking for any help. She drew and colored the monkey all by herself.
Recovery from autistic spectrum disorders IS possible. I can't say she never has a meltdown but today they are few and far between. Today I thank her for every tantrum she ever had. Her outbursts are what motivated us to keep searching. It was terribly painful, but it led us in the direction we needed to go toward healing. Her vision doctor says something along the lines of "The behavior is your big clue. It is the child offering you information on how to help them."
My friend Kathy sent me a link for a conference that looks promising. It's on the "wrong" coast but those of you out west might want to check it out!
Monday, January 22, 2007
A Parable of Immortality
"I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength, and I stand and watch until at last she hangs like a speck of white cloud just where the sea and sky come down to mingle with each other. Then someone at my side says, 'There she goes!'
Gone where? Gone from my sight ... that is all.
She is just as large in mast and hull and spar as she was when she left my side and just as able to bear her load of living freight to the place of destination. Her diminished size is in me, not in her. And just at the moment when someone at my side says, 'There she goes!' there are other eyes watching her coming and their voices ready to take up the glad shouts 'Here she comes!'"
- Henry Van Dyke
Sunday, January 21, 2007
Today, I seared my finger on a hot frying pan. Feeling it start to blister, I immediately ran it under cold water and then applied the cream. An hour later I am happy to report no blister, no pain.
No need to thank me. Just knowing you're on-line, ordering a jar is enough.
(I really should be getting paid for this)!
Saturday, January 20, 2007
I envy bloggers that post their mugs everyday like it's no big thang. They make it look all artsy and whimsical. (You know who you are Darlene, Rob, etc.).
Anyway...discussing the pic, I tell Todd we need a new digital camera (ours sucks) and he says,
"They don't make miracle cameras."
My eyes pop at the insult and pointing to the computer across the room I make a strange "unnhhhh....." sound.
He knows instantly I'm threatening to tell the
blog-i-verse about his remark.
He glances in the direction of the computer and laughs.
"I mean they can't make a camera that can get inside your crazy head and convince you the picture looks good!"
"Yeah sure. That's what you meant. Good thinking on your feet, buddy."
I'm totally telling.
Friday, January 19, 2007
This today from Carter's mom Michelle. This little guy has been through so much in his short life. Remember, he was less than 2 pounds at birth. Please keep him in love and light.
"Carter’s surgery on Dec. 29th went well, however, recovery has been a different story. He still remains hospitalized and no word yet as to when they think he might come home. His digestive track is compromised as we know, but on top of that he contracted Rotavirus which really set him back. Last week it was decided that he was too far behind nutritionally, and he had to go back on TPN/Lipids for nutrition. Unfortunately, his veins are so damaged/scarred/blown they were unable to put in a PIC/PCVC line (or even a simple IV line for that matter) and he had to undergo anesthesia again to have a surgical line placed in his leg/artery.(surgery #6) He had lost 1.5 lbs in his 2 weeks after surgery, so there was no alternative to the TPN. The good news is that they feel he won’t need to be on TPN for long, just until he feels better and gains weight. He is already starting to look better and is gaining daily (instead of losing daily). Hopefully this course of TPN will only be needed for another week or so. We should have word by mid-next week if he can come home soon. He also had severe diaper rash which required special treatment, but that too is clearing up. (his poor little goo-loo had never pooped before, so it couldn’t handle the acid)."
Thursday, January 18, 2007
Today was the day.
Although she has numbing cream on, and although she readily admits it doesn’t hurt, the procedure causes her much anxiety.
Dr. Mumper’s office has it down. They have a pediatric IV specialist come in on Thursdays. She is an expert on getting small veins the first time. Even so, it took three of us to hold her still (not including the woman that actually does the procedure).
Riley screamed her head off.
Afterward, as we stepped out of the doctor’s office into the cold air, she smiled and said,
"That wasn’t so bad."
Maybe not for you dear.
Maybe not for you.
Wednesday, January 17, 2007
Tuesday, January 16, 2007
And a woman who held a babe against her bosom said, "Speak to us of Children." And he said:
Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you, yet they belong not to you.
You may give them your love but not your thoughts.
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.
You may strive to be like them, but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
You are the bows from which your children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite, and He bends you with His might that
His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as he loves the arrow that flies, so He loves also the bow that is stable.
Monday, January 15, 2007
“Mommy, I want to go in the Dr. Seuss room.” Seth whispers, pointing toward the grown-up section of the library.
He’s referring to the small sanctuary the library has dedicated to the memory of Dr. Martin Luther King Jr.
One time last year we happened to be on that end of the building and he asked about the room so I took him in. No talking is allowed in there. The room has glass walls, and lots of photos taken during the civil rights movement. A bust of King rests on a podium.
We were the only ones in the room and Seth sat quietly while we whispered about Dr. King. What do you tell a three year old? I did my best.
Seth picked up a flyer and took it with him, carrying it around for a few days before eventually losing it. He was so proud of that yellow flyer.
Today I correct him, “Dr. King, baby…not Dr. Seuss.”
We walk into the room and Seth sits quietly on a chair for a couple of minutes. Once again, we’re the only people in there.
“Mommy, why do they have a statue of Dr. King?” he asks in his quietest whisper.
“Because he was a very good man, and we want to remember all he taught us.” I whisper back.
Wondering what Seth remembers from our talk last year, I ask,
“Seth.....what did Dr. King teach?”
He thinks for a second. Cocks his head sideways and puts his hand to his chin. He looks up at me with a solemn expression on his face and says,
Saturday, January 13, 2007
If you have a child on the spectrum, I would suggest running, not walking, to the nearest book store (or on-line store) and ordering Dr. Melvin Kaplan’s Seeing Through New Eyes.
After reading his book I made an appointment and he evaluated both my kids on Thursday and Friday.
First of all. My children have 20/20 visual acuity. They can read a chart like nobody’s business. Any “typical” eye doctor would say they see just fine.
But imagine this scenario….
The doctor has a whiffle ball hanging on a string from the ceiling. He tells Riley they will play catch. He lets it go, and as it travels toward her, she flinches. It hits her in the face as she unsuccessfully tries to grab it. They try several times. She never does catch the ball.
He puts a pair of prism lenses on her and sends the ball in her direction. She reaches out and snatches it. No flinching.
Next he takes a rolling pin, and asks her to hold both ends. With the prism lenses still on he sails the ball her way and she bats it with the surface of the rolling pin. She nails it every time. The look on her face is precious. She’s stoked. Without being asked, she continues, counting to 100. She doesn‘t miss once. Until this moment I’ve never seen a determined look on her face when doing anything physical or athletic.
I could go on and on about the exam, but the gist is, her ambient vision is incredibly messed up (while her focal vision is fine). This doctor claims we can fix that, and he says when we do, her anxiety will go out the window. Well, ladies and gentlemen, anxiety is the major issue left here. Get rid of that and this girl is going to FLY!
Dr. Kaplan is an older gentleman with a calm relaxed demeanor. During Riley's evaluation he said offhandedly in his NY accent,
"This one is really bright. She's gonna be just fine." I reached out and snatched his sentiment like Riley snatched that ball and tucked it in close to my heart. I believe it.
She'll need to wear glasses for a about a year and it will require a commitment from us to do vision therapy using prism lenses at home, for twenty minutes, twice a day.
But wait! There’s more! Let’s talk about the boy.
Since we were there with the expert we had Seth evaluated too. Turns out, Seth’s eyes are not functioning in tandem. They are taking turns. Therefore, he can’t attend to anything for too long. Therefore, he is up and down from the dinner table, 100 times during a meal because he literally can’t sit still. Therefore he jumps on the couch constantly rather than just sitting to watch TV. This explains why he is constantly butting into us like a little ram. The doctor did a bunch of exercises with him that called for using both eyes together and after less than 20 minutes Seth was slumped in his chair, rubbing his eyes, exhausted from the effort.
Might we have just saved ourselves an ADHD diagnosis down the road?
Dr. Kaplan says kids like Seth often become class clowns to cover up the hard time they are having in school. (We already see this in him to some extent).
He says once the eyes are working properly, new permanent maps in the brain will be made. The kids won’t need glasses once those maps are locked in place.
So, by next week, both my babies will be wearing glasses and looking cuter than ever, (if that’s even possible)?
It’s gonna be a great year.
*There are a lot of doctors doing “vision therapy” but few are doing what this guy is doing. I would suggest reading the book if you are interested in prism lenses/vision therapy. Dr. Kaplan also works with adults. He's in Tarrytown NY.
Me: I don't recall ever learning in driver's ed, that if your car broke down to put a white bag or t-shirt in the window?
Todd: Nope. I don't think that was on the test?
Me: It means, "My car broke down. I didn't just leave it. Nothing to see here. No foul play," right?
Todd: That's what I take it as.
Me: So....if I were going to commit foul play, I'd put a white bag in the widow, to throw them off the chase.
Todd: You're always thinking.
Wednesday, January 10, 2007
Her current teacher in her small self contained class is wonderful. Riley has gained so much socially from her experience this year, but she is truly not being academically challenged. She needs to be mainstreamed into a regular classroom with an aide for support but school officials balk at the aide request. Without emotional/social support she will certainly be set up to fail. She's too academically advanced for special ed. Not emotionally or socially adept enough for mainstream. If my child had a visible disability like Down Syndrome, or Cerebral Palsy, they would not question.
Will there ever be a place for her? Can we endure this battle with the public schools every year?
Upset, I called Todd. Then, I got myself together and went to pick her up at school.
When I got there her teacher aproached me with a form. Would I please give the art teacher permission to submit one of Riley's drawings in a statewide contest? She showed me the picture.
It is Riley, with her hands on a little table. The colors are vibrant and bright. On the table is a cat. Underneath, she wrote in clear neat letters, "When I grow up, I'm going to be a veterinarian."
A year ago she couldn't write.
*An angel came into her life and taught her. There will be more angels.
If she wins she'll get a 36K scholarship for college.
Even if she doesn't win, this little transaction certainly helped change my perspective.
Monday, January 08, 2007
I don’t think I had an opinion one way or the other before becoming an OB nurse. If anyone had asked me would I circumcise one day? I most likely would have answered "yes."
As a brand new nurse in an obstetrical unit, part of my responsibility was to assist doctors during circumcisions. The first time I witnessed it, I was in shock. I never recovered.
The thing that really puzzled me was the lack of pain control measures that were taken. If a parent requested it, a doctor might agree to put a topical anesthetic on the infant. Many refused to do so. Even those who agreed, seemed to do it just to appease the parents and did not wait the allotted time for the numbing to take effect. You see, circs are five minute procedures. If a doctor gets a break in his day, he makes a quick stop in the nursery, performs a circ or two and off he goes. No time to hang around waiting.
Make no mistake, this procedure is brutal. At birth, the foreskin is adhered to the head of the penis. Prying it loose is akin to sticking a knife under a fingernail and pulling it off. The babies are strapped onto a board with velcro and cry so hard once the clamping and cutting starts, they often wind up vomiting and pooping on the table from the stress.
Some say it is less painful to do this to an infant than to an adult. I question the logic here? Babies feel pain. Period. At least an adult would have the benefit of being properly anesthetized and could take a lot of percocet afterward. The fact that they don’t remember doesn’t make sense to me either? Any body worker will tell you that trauma is indeed stored in the body. Seems like a rude welcome to the world to me?
I believe every parent considering this procedure should be required to see a video of it and to know exactly what will be happening to their child. Only then can they make informed decisions.
I’m not even going to get into the ethics/cosmetic surgery question in this post and I am not attempting to shame anyone who had their boy circumcised without knowing any of this. You simply don't know until you know. You trust your doctor. Believe me, we've been there.
I just hope after reading this, expectant parents will hold their doctors accountable and insist on proper pain medication if they choose circumcision for their infants.
The following video is not an exaggeration. It is the exact procedure I witnessed over and over again at two different hospitals. If you are brave enough to watch, you will see what happens all over the country every day to our newborn sons. I don’t believe this baby received any pain meds. The doctor skirts around the question and I don’t see him applying any anesthetic here as he says he is? As you will see, circs are a looong five minutes.
Would a vet operate on an animal in this country without some form of anesthesia? I believe we owe our boys at least this much.
Thank you Lindsay for being brave enough to bring up this emotionally charged topic. I admire you for being informed, whatever you decide.
Over the weekend we went to our nephew Bobby’s 5th birthday party. It was held at a gymnastics studio. There were at least 20 kids. The parents sat in a little loft above the action, chatting it up. I had to be down on the floor with Riley. The children were divided into three groups, and the groups rotated through separate activities. Seth was not in our group.
In order to do the rings, a child had to climb up onto a mat that came up to my waist. Then onto another. By the time a kid had the rings in their hands they were easily ten feet off the ground, being spotted very closely by the gymnastic professional.
Riley’s initial reaction (per usual) was to say “no.” She didn’t want to do it. I told her it was her choice. She didn’t have to. When almost everyone in our group had gone, she whispered, “I think I want to do it.”
“Okay then. You can do it.” I said.
It was her turn and as I lifted her onto the mat she started to cry.
“No! I don’t want to!”
But she did want to. I knew she did.
The gymnastics girl said I could get up there too. Both of us would keep our hands on her. I promised we wouldn’t let go. Riley cried but she grabbed hold of the rings and we pushed her gently back and forth about three times. As we let her down she was beaming.
Next we went to the pit full of foam blocks. Riley’s 8 year old cousin Callie took over, holding her hand and encouraging her to jump in. Callie is an absolute doll, always looking out for my girl.
I happened to scan the room, and saw Seth way over on the other side, attempting to scale the big mat for the rings. He looked like a little puppy trying to scramble onto a high couch. Someone finally gave him a push on his bottom to help him up.
Back to Riley. She’s swimming through the foam blocks. She's smiling.
When I look up again, Seth is grabbing the rings, taking his first swing. He’s high in the air, and he’s searching for me. Our eyes connect and his light up.
When he jumps off the big mat he looks for me again. I do a big clappy dance for him and he pulls his hands in fists to his shoulders, huge grin.
I remember being little.
Look at me! Look at me!
If mommy didn’t see, does it even count?
How many of his moments have I missed because I’ve had to be so focused on her?
What if I hadn’t looked up?
But I did look up.
I saw you buddy!
It was a great day.
Friday, January 05, 2007
Still, my first few years as a parent, I kept tight tabs on what and how much my children watched.
I’ve lightened up considerably. Six years into the game I’ve stopped trying to be the purfrect parent. PBS Kids and The Disney channel are frequent guests in our home. See? I even misspelled perfect.
The children are happy, I’m happy.
"But Mommy! We want to watch Nick Jr! We want Dora and Blues Clues!"
"You’ve got Dora and Blues Clues videos. Shall I put one in?" I smile sweetly.
"No! We want regular Dora....on TV!
You see. It's not even the TV that bothers me so much. It’s the commercials. I’m not a big shopper, but on rare occassion when I find myself in a mall, there are suddenly thousands of things I’d like to have. How is a little kid supposed to compete against a billion dollar industry that’s done extensive research on how to manipulate them?
Then again, mama really wants her break!
Time for a little chat.
The next day. Riley and Seth are in the living room, watching Nick Jr. (regular). A commercial comes on and Seth is there, scowling, pointing at the television.
"We don’t need that!" He says.
Riley adds indignantly, "They want to take my money!"
Smiling, I sip my coffee. One day I’m going to convince Hot Toddy to get rid of that noisy box. Until then, I’ll enjoy my break, and try not to worry so much.
- Richard Bach
Thursday, January 04, 2007
Hot Toddy trotted off to work today, six days after the appendectomy. Good that he went. He'll be safer. There, he won't be tempted to drag Christmas trees to the curb or run the vacuum. Yes folks, I caught him doing both those things yesterday. I guess he is feeling well.
Riley, walking down the hall this morning, said, "I'm having a hard time with my sock." She stopped, bent down and twisted it into the right position, all the while talking herself through. "It's okay, I can handle it." she said.
(Sound of choir singing...ah-AH)
I got my last mercury filling replaced this morning. No more metal in my mouth.
So many reasons to celebrate.
Wednesday, January 03, 2007
He's a good kid. Here he is with his girlfriend Faith.
Love & Light in his direction would be most appreciated.
* 2:45PM It looks like it's just the leg. No internal injuries. He will have surgery this evening. Please visualize him healthy and whole.
Tuesday, January 02, 2007
"Today is a special day for A-CHAMP and all children with autism because today the New York law becomes effective that bans discrimination in insurance coverage against those with autism and defines autism as a "neurobiological" condition."
Monday, January 01, 2007
I'm calling myself on this. I would never say such a mean thing to a friend. I would never say something like that in front of Riley, let alone to her. Why is it okay to say it to me?
This body has been so good to me even though I've abused it in so many ways at various times in my life. I've starved it, overfed it, run it into the ground. I've put unhealthy things into it, ignored it's signals, denied it rest, blatently neglected it.
It has taken me through 38 years with little complaint. It carried my babies, and fed them.
She deserves a little respect.
Over the last couple of years, as I've cleaned up our diet, as I've cleared out most of the chemicals in our home, as I've become more conscious of the thoughts I focus on, there have been times I swear I've actually felt this body reknitting itself.
I offer her gratitude.
That's it for me.
No more putting myself down.
Besides, there's nothing wrong with my ass.
*photo by Seth O'Neil