Wednesday, April 30, 2008
I beg you please teach your children compassion for kids on the spectrum and how 'bout some manners too
"We don't like her. She's always crying. She's a crybaby."
Riley had been blissfully swinging, but the color immediately drained from her face. She of course, began to cry.
What was I supposed to say?
How do I explain to these kids what the deal is with Riley when I barely understand it myself sometimes?
What can I possibly say? When her crying sometimes gets on my last nerve too? Fact is, this little guy spends more hours a day with her than I do. How is he supposed to process her outbursts?
"That wasn't a nice thing to say. She's doing her best. She has a hard time. You hurt her feelings."
It was all I could muster as I held my little girl in my arms and absorbed her cries.
"I'm not a crybaby." She whimpered.
"I know." I said, kissing her head.
"I know you're not."
Then, I was perusing Pat Wood's blog. She wrote the wonderful novel Lottery. Have you read it? It's fantastic. Anyway....there was a post about a little girl named Ella. To die for!
Two very different kids.
Each stunningly brave in their own way.
One lives in a world that is "too much" for him.
One climbs to the top of the wind.
May each inspire you today to do something brave.
Tuesday, April 29, 2008
* adorable photos in The Baby Bonding Book for Dads by Christopher Briscoe. Warning...they may make you want to reproduce.
Monday, April 28, 2008
Saturday, April 26, 2008
BTW, what's been your biggest blogging faux pas?
I'm dying to know. Be anonymous if you like.
And while you're over there, read this guy's post. And don't forget to wave.
It's this mom that pisses me off.
When Riley sees them coming from the opposite direction, her and Seth run to catch up. When these sweet little girls stop to wait for Riley, this woman gets visibly annoyed. She marches ahead of her charges, forcing her daughter keep step with her and the two of them keep walking ahead of the rest of us. The children jabber as we walk another block and a half to school, and this woman does not make eye contact with me. Has not yet introduced herself. Here I am...walking and talking with the two she is supposedly taking to school. Here I am, new resident only lived here a month and she can't be bothered to say hello? Here I am, with the cutest, sweetest little kids in the world, and she does not even acknowledge them? Second time in a week with this crap.
Who the hell does she think she is?
I suppose because she's off to her real job, she's more important than some stay at home mom in sweats?
I'm sure she's just soooooo busy.
Or maybe she has something against my special needs kid?
Or maybe she's just rude to everyone?
I walk along, silently fuming.
Looking up, the sky is beautiful and blue through the branches in the trees.
Looking down, Seth's thick little hand holds my left. Riley's delicate one holds my right.
Step. Step. Step.
Or maybe, just maybe.....the woman walking ahead of me with the poor social skills has Asperger's.
Wednesday, April 23, 2008
The family had no idea there were such things as chelation, methyl-b12, anti-virals, hyperbaric oxygen, etc. They didn't know about the GF/CF diet.
They used the guide and googled all the forbidden therapies.
The morning after this child's second MB12 shot, his mother woke him up for school and he rolled over and said,
"Good morning Mommy."
They were the first words he'd ever spoken, to anyone.
* Correction. I spoke to the grandfather again today to make sure I had my story straight. Did I hear that right? Actually, it was the morning after the child's first MB12 shot that he spoke, not his second one.
Tuesday, April 22, 2008
When you are in the presence of a mortician, (one of the participants at the writing workshop was one)the subject of death is going to come up. Which led to another participant mentioning this website.
It's a photo gallery of terminally ill people, who gave their permission to be professionally photographed before and after their deaths.
The contrast between the light in a person's eyes, and the look of death...is unmistakable. The life force, that thing that makes us human...is gone.
The body is still beautiful.
But very much not alive.
Poignant narratives accompany the portraits. One woman laments she's just bought a new freezer. Another is pissed she worked hard all her life to get to retirement, but would not be able to reap the rewards. Another said having a terminal illness felt like she was being "rejected by life itself."
How often do we take a moment, to sit with ourselves and feel our physical life?
It's right there in us,
as steady as it is undefinable,
in one moment,
Monday, April 21, 2008
Even if other people at writing workshops think their blogs are time suckers and energy drains, and even if they abandoned their own blogs....please know that it's different for us.
You are a joy to me and I have no intention of giving you up.
If there is one thing Jennifer does, it's cut to the chase. Within 24 hours this group of strangers were intimate friends and sources of mutual support. A space was made in our hearts for future projects. Two new ideas popped out of my own psyche, and another one I'd been kicking around became more clear.
One of the participants could understand English but she could not write in it. She read her work in Spanish and though most of us did not speak the language Jennifer requested we still give her feedback. Just two or three words based on what we felt as she read. Out of our heads, into our hearts. Listening to the music of this woman's voice, her gift to us...our feedback striking a deep chord within her...it was an experience I won't soon forget.
The weekend was beautiful. Jennifer is a teacher to her core. I wish everyone reading this a circle where they feel safe, expressing the truth within their heart.
Thank you Jennifer.
Thank you Writing.
Friday, April 18, 2008
-Also check out this beautiful "life is a train ride" parable.
-Have a great weekend y'all! Thanks for riding this train with me!
Thursday, April 17, 2008
He spent today vomiting.
Riley merely has a runny nose but she stayed home from school too. A drippy nose can rock her world as much as the flu rocks Seth's.
Despite her nose, she did help me today. Kept grabbing new towels every time he threw up.
She rubbed Seth's head.
She sang to the tune of Frère Jacques.
Did you throw up?
Did you throw up?
Sorry you don't feel good.
Sorry you don't feel good.
Okay, maybe that wasn't so helpful in the moment, but it's cute upon retrospect.
Both are fast asleep right now.
Tomorrow's another day.
May they be well.
Wednesday, April 16, 2008
If you are interested in learning about nutrition and how it relates to autism and other neurological conditions, you won't want to miss Vicki's radio show on Monday.
It astonishes me that even today in the midst of this epidemic, many medical doctors poo-poo dietary interventions but will heap on the prozac no questions asked. In fact, the only intervention mainstream medicine offered for Riley when she was three was to put her on psychotropic drugs. True, there were no studies on the success of dietary interventions, but there were no studies on the safety of prozac on the developing brain of the toddler either.
Shouldn't the least intervention possible be the first one tried?
Okay, I'm going to be firm here.
There is really no good excuse for not trying GF/CF if you have a kid on the spectrum. No good excuse for not eliminating the food dye. The preservatives, the junk. A big piece of this puzzle is these kids are not able to eliminate toxins efficiently. I could get into the methylation cycle and oxidative stress but I don't want to imagine all those eyes glazing over, all those red X's being clicked. Let's just say the last thing kids on the spectrum need,is to be dealing with more crap in their systems piled on by dear old mom and dad and well meaning relatives.
I'm not saying anyone has to do it forever, but why not try? If it has the potential to help your kid and it won't harm them? Try.
And don't even whine to me about the money. What does one trip to McDonalds for a family of four cost? I could feed our family for a week on GF/CF for that amount. Easily.
I'm not saying it isn't challenging to totally revamp your diet. (Though with all the resources available today it isn't that bad). I'm not saying you won't have to stand your ground with teachers and relatives who scoff at you. You will.
I'm just saying tough. Be a grown up.
I'm just saying try.
* Hear Julie Matthews a Certified Nutrition Consultant specializing in Autism Spectrum Disorder, and affiliated with DAN! live on Monday at 12:00 PST on KKNW am 1150 in San Fransisco. It can also be streamed live on the net via I-Tunes/Windows media player at http://126.96.36.199:7750/listen.pls.
They also load the podcast on http://www.conversationslive.net/ following the show so people can listen in anytime.
** We did the Specific Carb Diet for almost two years and are now living with no restrictions, though we try to keep it healthy. Most of the time.
Tuesday, April 15, 2008
It doesn't interest me what you do for a living
I want to know what you ache for
and if you dare to dream of meeting your heart's
It doesn't interest me how old you are
I want to know if you will risk looking like a fool
for your dreams
for the adventure of being alive.
It doesn't interest me what planets are squaring
I want to know if you have touched the center of your
if you have been opened by life's betrayals
or have become shrivelled and closed
from fear of further pain.
I want to know if you can sit with pain
mine or your own
without moving to hide it
or fade it
or fix it.
I want to know if you can be with joy
mine or your own
if you can dance with wildness
and let the ecstasy fill you to the tips of your
fingers and toes
without cautioning us to
to remember the limitations of being human.
It doesn't interest me if the story you are telling me
I want to know if you can
to be true to yourself.
If you can bear the accusation of betrayal
and not betray your own soul.
If you can be faithless
and therefore trustworthy.
I want to know if you can see
even when it is not pretty
And if you can source your own life
from its presence.
I want to know if you can live with failure
yours and mine
and still stand on the edge of the lake
and shout to the silver of the full moon,
It doesn't interest me
to know where you live or how much money you have.
I want to know if you can get up
after a night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.
It doesn't interest me who you know
or how you came to be here.
I want to know if you will stand
in the center of the fire
and not shrink back.
It doesn't interest me where or what or with whom
you have studied.
I want to know what sustains you
from the inside
when all else falls away.
I want to know if you can be alone
and if you truly like the company you keep
in the empty moments.
* Poem read at Janet's wedding by my sister Kelli.
Monday, April 14, 2008
My friend Janet got married over the weekend. In a castle. Renaissance style.
Below is the bride, my sister Kelli in the red shawl, and your struly. I was going to correct that last line, but I'm tired, and "your struly" has a bit of a ring to it, no?
My mom and her husband.
Me & Hot Toddy.
Below is my beautiful niece Lauren. She does not
A sweaty bride and groom after dancing up a storm.
Todd's parents took good care of the kiddos.
Riley and Seth got to see lots of cousins.
Here's Ms. Riley playing the drums in my brother's basement. (We will not be getting a set).
Sensitive ears, schmensitive ears.
Friday, April 11, 2008
Have a great weekend, y'all!
From Talk About Curing Autism (TACA)
Green Our Vaccines RallyWith Jenny McCarthy & Jim Carrey
Do you know that our vaccines contain toxins as well as animal and human by products?
Jenny & Jim Know.
They say "Green Our Vaccines!"
Do you know how many vaccines your child received?
Jenny and Jim Know.
Too Many Too Soon!
Jenny McCarthy and Jim Carrey invite you to join them for the most historic event of 2008, the Green Our Vaccines Rally, on Wednesday, June 4, in Washington, DC.
Jenny & Jim request that you send this invite to your friends and family members.
Please take the following actions right away:
Click here to confirm your attendance at the Rally.
We need thousands there – we need to be heard.
Please be a NEIGHBORHOOD LEADER and rally your community to come to this historic event. This is the day our voices will be heard. So let's join together and be Louder Than Words. For complete rally information, please visit http://rs6.net/tn.jsp?e=001ZyCNLau8-azukB1voftGzcwZkAMbjxplYnGEMzywuNLl7adUgt8i9dKQGAXNwA0vETHmtDASUtJUWpe1d7hy5IPXUTBxUX4dYoSGKXod4lg= or http://rs6.net/tn.jsp?e=001ZyCNLau8-axfHeWUdJWRiqa8ONmSAdlv9OGXld3Ybm_I2Pq1Lg4wVvolEuEOHDqWYr2mYFWr_jVybHgTINJp5ctNSMqU5fx9ZebkyI4MEwaJqJGlUtVfw6u4fQ92WW13.
Thursday, April 10, 2008
And she pokes.
And she pokes.
We're talking ten minutes for a morning pee. Start to finish. You know. All that wiping and hand washing and of course...peeing.
"C'mon Riley. Hurry up! I want to get in the shower."
This morning she looked up at me sweetly and without an ounce of sarcasm (she does not "get" sarcasm) asked,
"Do you want to take a shower to wash all the anger off you? Or is it just because you're dirty."
Wednesday, April 09, 2008
Tuesday, April 08, 2008
Sensory issues flared.
The mere thought of learning to tie overwhelmed her.
She wound up SCREAMING in the shoe store (our third one), and I was really firm with her. Grabbed her by the jaw, got eye to eye and told her she was not allowed to scream like that in public. She was embarrassing me and scaring other people.
She fell on the floor crying.
"Mommy, I'm sorry. You're right. I'm such a baby!" She sobbed.
I wound up sitting on the floor next to her, swallowing hard to hold back my own tears. A pile of shoes surrounded us. Pink ones. Nikes. Glittery sneakers. Sketchers. Blue Reeboks. Bratz. Barbie.
Her feet won't fit in her old sneakers another minute.
And she needs new ones for gym class.I don't want her to hate herself.
But she needs shoes.
Monday, April 07, 2008
Sunday, April 06, 2008
After having babies, but before I started writing in earnest, I found myself saying to my husband,
"I feel so disappeared."
Now, perhaps the grammar should have been a red flag, but the pull I felt was in one direction, and that was most definitely toward writing.
As my words filled the pages, I began to appear once again.
And this time I'm staying.
For any mothers out there who write, or who want to but have not figured out how to make it happen, I offer you this from from Melanie at MotherVerse Magazine:
MotherVerse Magazine, a semiannual literary magazine for mothers, is launching an exciting new addition; mother writer workshops. These virtual workshops are designed to help facilitate mother-writing by encouraging mothers to come together to learn and guide one another. The workshops will be led by experienced published mentors and are a great opportunity to start or expand a writing project or blog. MotherVerse is currently offering two workshops, "Writing Motherhood" and "Publishing a Blog" which will begin at the end of April and early May. If you are interested in joining please sign up as soon as possible as each workshop has a limited enrollment. Visit http://www.motherverse.com/workshops for more information and to register.
C'mon! Especially you lurkers. You know you want to do it.
And...speaking of writing workshops, author Jennifer Lauck's, Writing Life (not just for mothers, BTW) in Cleveland next weekend is full, but we may be able to sneak in one or two more writers if you drop her an e-mail and plead your case about how you really really want to be there.
Also...If you are here in Cleveland, Jennifer will be giving a reading at Barnes & Noble in Beechwood, Sunday the 20th at 7PM. They've been promoting it heavily so you might want to get there early to get a seat.
I'll be there too. Come say "Hi!"
Being visible is good.
Saturday, April 05, 2008
Friday, April 04, 2008
The doors opened and Riley came out with a little girl (who is in her class and lives on our new street). They ran up to me, asking if they could play after school. I told them to ask her mom and when she said yes, they hugged and jumped up and down screaming, "YAY!"
Did ya'll get that? Hugged and jumped up and down and screamed happily.
Little friend came over, they had a snack, did their homework together.
I heard the little girl say, "Riley you should be really proud because on Tuesday at school, you didn't get upset at all!"
They also complimented each other on how smart they both were, whizzing through homework like it was nothing.
After, they watched Hairspray.
Today another playdate with a different friend.
Riley is learning so much,
and she is holding her own.
I love this neighborhood.
I love this girl.