Countering...

Three Ways to Sunday: A Major Rant

2012-02-15T07:17:00.001-06:00

I want a do-over. Some weeks, there's just no winning. Those hassles pile up and weigh a body down, sink the person into a seriously growly mood. Except I'm working on my second case of laryngitis since the semester began. At the rate it's going, I'll have no voice by the end of the day, so instead of saying all this, I'll rant via keyboard because these things need to be said.

Frak me three ways to Sunday. What is with this crap, anyway? I am still not well, after weeks of being sick, and a new study just came out, as I sit here considering whether to go back to the clinic, showing that antibiotics are ineffective with sinus infections. Given that the last batch of antibiotics didn't knock this stuff out, and that I have a mono diagnosis, I guess I just have to wait this out. I'm getting tired of this crap, tired of sleeping every single chance I get, tired of being in bed before eight at night, tired of being tired. It's keeping me from things I want to do, need to do, and it makes it challenging to do things that I do manage to get done.

Ah well. Maybe my body knows something my mind doesn't want to admit--that I'm in need of a break, in need of restoration. Makes you wonder is it my spirit that needs restoration, more so than my body, and if, in the process of taking care of my own mental well-being, the body will follow? I hope so. Both are feeling worn thin, given the feeling I have of battles on all sides of me demanding to be fought; there are things that make me beyond frustrated.

The girls's schools seem to have lost their collective heads--Lily's coach making the kids play a game called prison ball that's as bad as it sounds, and Rosie's thinking that having the kids beat the crap out of each other's legs with swim noodles is good fun--math testing gone to ridiculous lengths--what 10 year old kid needs two months of four hours of math testing a week in order to prepare for the new state test? Hours of stupid math homework a week that leave Lily, Rick, and me ready to drop kick the math homework and the backpack it comes home in out to the dumpster.

Every afternoon and evening has become a battleground to get the homework with the girls and the studying for various tests done. No wonder I'm in bed at eight. I've spent the time from the bus dropping them off sometimes right up to bedtime helping them get their work done, fighting them to get it done.

It's building up, my dissatisfaction with the school system, with its stupid stuff an animal workshop (don't forget your money!) and items for sale in the office, with a testing system that has ruined third grade on--we're making kids HATE school and hate learning, and parents hate it as well. We're breeding a culture of anti-intellectuals because they associate learning with ridiculous circling and bubbling and writing paragraph numbers down.

I don't get how or why we as parents put up with this bullshit, unless there are those of us who think it's appropriate to bring commercialism into the school system and inept, incompetent state testing demands that force the curriculum to be cut to teaching to the test.

Consider this my war cry.

My kids aren't buying shit at school, especially a stuff-your-bulldog thing.

We aren't selling fundraising crap, either. You want money from me for school supplies, ask.

And unless you, as a coach, want me hitting you in the legs with a swim noodle, my daughter better not be getting hit with a frakking noodle. Don't even get me started with prison ball.

And the homework crap is on notice. Five afternoons and evenings a week, we're held captive to some of the dumbest homework I've seen that DOES nothing to build skills but everything to kill any enjoyment or appreciation of an incredible subject that should light my daughters up with joy. I loved math, loved the manipulation of numbers, loved the underlying patterns that numbers have and of finding those patterns. I hate the math my kids come home with. And so do THEY.

Honestly, some days it's enough to make a person want to go back to bed!

F*%king Mondays: Always Out For You

2012-02-13T19:10:00.002-06:00

What did I expect? I had to wear a tee with this saying:

Setting myself up, right?

Our oven died this weekend--bottom heating element managed to have a half-inch portion just disintegrate. $80 for a new heating element for a nine-year-old stove or $320 for a new one.

Migraine at midday, but at least the meds worked.

Paperwork snafu leading to trip in to the business to fill it out again.

Frustrating principle question and having to do something I disagreed with...grrrrrr.

Lost part of a filling--flooding me with immediate anxiety over the tooth and the dentist trip in my future.

Toilet overflowed all over the floor...sigh

Frak.

I'm going to bed. Somedays we just have to make Mondays go away fast.

That nice day happened someplace else after all.

Looking Back Never Hurts

2012-02-12T16:04:00.000-06:00

Lily found our wedding dvd the other day, and we sat down and watched the fading, crackling dvd capture of the vhs tape. By the time we converted the video to dvd, the tape was over 15 years old and showing its age, but it's still fun to see Rick and me so young, and we laughed along with the giggle fit I had during the vows. We're working now to get it onto the computer and converted and trimmed, but we're not having the best of luck.

We pulled out our wedding photos, too, to show the girls, who didn't remember seeing them before. It was odd to realize that Bobby is two years older than I am in the photos below, that I am now older than my mother was when I got married, that Rick is the same age as Dad was. We'll celebrate 24 years this year, and it's comforting to look back at us as we began and see that while we certainly wear our years, we're still laughing and full of life and joy. And occasionally still shoving cake in each other's faces, too, of course.

Dec 24, 1988

Early 1990; I can see Bobby in my face.

The continuity is comforting.

Rick and Bobby.

2004

Awwww.

Looking back never hurts, especially to see just how far we've come and what we've brought with us.

Mono-a-mano

2012-02-08T17:52:00.001-06:00

It's been a rough two weeks--tears galore, bright spots, strep, then mono, and days passed in bed, sleeping hour after hour, as if in a week, I managed to make up for 22 years of child-created sleep debt. I'm pretty sure there's still some sleep debt remaining, as I remain wiped out, with a shower and getting dressed this afternoon taking all the energy I had and depleting it.

Two weeks ago we had to put Frankie, our giant orange tabby, to sleep. Although he had been ill since before Christmas, we weren't expecting to make that decision as suddenly as we had to, and there's a part of me that remains mystified that he's really gone, so great was his presence. The fact that I can replay the scene where we pet him, crooning to him, as he fell asleep and died seems to have no real impact on that desire to wish it weren't so. If I feel this, after all the deaths I've dealt with, it's no wonder that Rosie can be reduced to inconsolable tears at being told we'd brought Frankie's ashes home today.

It's been a weird two weeks--being sick and spending a lot of it separated from everyone else, in bed and asleep has made it doubly so--I feel disconnected, disjointed, out of it. Bobby and Lily deal with death differently--they bounced back resiliently, and neither had made any mention of Frankie in the last two weeks. After the other losses this past year, I understand that they hurt, they care, they haven't really forgotten, but that it's easier for them to not think of it and not dwell there. I hadn't raised it because it seems incredibly tacky to bring something up just to check and see if they are feeling something--to impose sadness for one's own reassurance is cruel. Besides, Rick hasn't talked about it, either, and I would never presume he isn't in pain over it simply because he doesn't talk about it.

In our culture, we don't tend to talk about death, bring up our feelings about it, share in any great detail with others that we are hurting. Grief is something we are taught to wall off, distance ourselves from, and mourning, something our culture once took seriously, is not something we tend to engage in if we can avoid it. We gloss over it all, wanting to return to the normal rhythm--to experience grief-that peculiar pang of the heart that leaves us gasping for breath and certain our heart has shattered--this is too hard an emotion, and we have taught ourselves to find some way to distract ourselves, numb ourselves from the loss we feel.

So we replace pets--which is not a bad thing--we brought Daniel and Jack home four days after losing Frankie--so that we will not be alone, will have a distraction. Why should we be surprised at when people enter into new relationships soon after losing a mate? Replace, distract, move on as fast as possible. That's not all bad, but it's certainly not all good if we do it to numb ourselves.

Jack and Daniel--wonderful distractions

Kubler-Ross has us as a culture certain that we have but to move through the stages as fast as possible and we'll be good as new (not her fault, of course, that people took her stages too literally). We wonder at people who seem to linger in their loss, their pain always visible, and we grow impatient, but the reality is that although we may be sure our job is to move on with our lives, our dead left behind, we are far better off if we find a way to remain in relationship with our dead, to carry them with us, our love for them remaining in the present.

Death may separate us, make it harder, cause tremendous pain, but it does not mean we must go on without our loved ones. We just have to find a way to carry them on with us. A favorite perfume, a watch, a piece of jewelry, a favorite meal, a sweater: so many ways we can carry our loved ones along with us, honor them and their continuing impact and influence in our lives.

Frankie's gone, and I miss that giant orange cat. Bringing his ashes home today hurt, caused the tears to flow, but there's still humor to be found. His ashes were lovingly placed in a gift bag with a poem and tissue paper. I pulled his box out, and saw in gold-plate "Fannie" and busted out laughing. To think of my Frankie, that giant of a cat with a soul as wide as the world, as a Fannie was just the thing I needed. The vet will get us a new plate with the right spelling and in the meantime, Frankie's on top of the fridge waiting, but instead of crying when I see the bag, I will smile and think of him as a Fannie.

Nothing "Fannie" about him.

Marching On

2012-02-01T09:06:00.001-06:00

It's been a week since we let Frankie go. I find it comforting to look at his pictures, to reach out and touch the screen. When we lost Ibit and Cookie last summer, I found it painful to see pictures of them, but this time, I find it a relief to be able to see Frankie, looking so immediate and touchable, as if he's not really gone, just slightly out of my reach. Perhaps it's a comfort because it is so painful to be without him, my constant companion.

While it's hurt to have him gone, it's not been a week without joys. Saturday, Mom took Rosie and me out to the shelter to find a new cat, and we came home with two! They are charming nine month old brothers who remind me of Frankie and ease the sadness. Rosie named them Jack O'Neill and Daniel Jackson, and the names have stuck with no changes (unusual for us).

The other cats, perhaps sensing Frankie's absence and my sorrow, have stepped in for him, too. Lucy has taken to sleeping on my chest at night and spending more time in my lap. Mabel continues her pattern of nearness to me without quite being intrusive. Her golden eyes watch me, keep pace with my movements as she sits regally, silent and unmoving, only her eyes shifting. Aphrodite has made sure to give my feet an extra bite, to let me know she cares. She butts her head against mine and climbs all over me. I am entwined with cats who show their care. Either that or they're hungry. One can never be certain. Perhaps it is only that they want dibs on Frankie's portion?

Aphrodite showing her love.

Daniel.

Daniel showing his contentment.

Daniel and Dude.

A lapful of love.

Jack.

Lucy keeping watch.

Daniel meeting Mabel.

What I Didn't Want

2012-01-26T19:13:00.002-06:00

We've worked hard since last month to try to save Frankie--three rounds of antibiotics, two stays at the vet for caths and shots and more, but yesterday morning, I knew that the fight was over. Although he'd been doing better, Monday night he became incontinent and ended up wetting the comforter and me when he jumped up on the bed to be with me.

He didn't seem to be in pain, so we moved him to the utility room, and it looked like he was doing okay, only using the litter box, and we were able to love on him and hold him Tuesday night, although we didn't risk him sleeping with us.

Wednesday morning, though, when I went to let him out, give him his meds and love on him some before I started my day, I knew. He was in pain and when he went to pee, he screamed--not a low mewl of discomfort, but a loud, shocked noise. I moved him to my bathroom where he would have more room and Mabel could be with him, and made the phone call to Rick and to the vet. The vet said there was nothing more to do-it was an inflammatory disease. We scheduled the appointment for four, so that I could get the kids after school and they could say goodbye.

Reluctantly, I left Frankie to go to an appointment, and when I returned a couple hours later, he was bleeding, leaving a trail of blood across the bathroom floor as he looked for any place that would give him comfort. There was none. He convulsed at times, and it was heartbreaking to see him suffer. I made another round of calls, and my mom set about getting the kids from their schools and Meals on Wheels. I got the appointment moved up an hour, as I couldn't bear to sit beside my Frankie and watch him suffer.

He curled next to me for awhile, his back feet resting against my hand, and when the pain racked through him, he would push against my hand, his body stretching in outrage.

Pain making him curl in on himself.

The kids home, I broke the news to them, and they gathered near him, talking to him.

Bobby was able to hold him briefly.

Rosie and I hugging him before putting him

down and sitting by him while we waited.

Rick, Bobby, and I were with Frankie, petting him and loving on him, as the vet injected him. Frankie went to sleep, his body loosening in relief, and he passed peacefully.

From a couple weeks ago,

when we thought things were going to be okay.

Frankie was as fine a cat as there has ever been. He was my baby, and my heart aches to be without him, but I know what we did for him was the right thing. It would have been worse to sit there helpless and watch him suffer until he died on his own.

If there's a heaven, the girls and I picture him with Ibit and Cookie and Scooter, the three other pets we said goodbye to in the last seven months. In the middle of tears today, we pretended they were playing poker together, then pictured them playing twister and other games.

We are not fine. Not even okay. But we are learning, each of us in our own way, what it means to say goodbye time after time to loved ones. And I will go to sleep tonight, in my mind's eye picturing Frankie lying on my chest, one of his paws resting on my cheek, and I will find comfort in knowing he is not hurting anymore. We will be okay. Maybe not today or tomorrow, but we will.

Once upon a time--Ibit and Frankie.

Frankie breaking into the house.

Seriously wanting to be our cat.

Telling the chicken, "No."

Frank making himself at home in 2006.

It's going to take mighty big shoes to fill the role Frankie played in our lives.

Goodbye, Frankie.

Bears are Good For Everything

2012-01-20T20:24:00.000-06:00

Ways to Deal with Important Appointments

2012-01-17T11:10:00.002-06:00

Given the recent attention regarding Chrissy and Joe Rivera and their daughter Amelia, I thought it'd be good to look at ways we can protect our children and make sure we don't have to rely on memory alone when it comes to important appointments we have to attend in regards to our children.

Certainly, those of us who've attended IEP meetings know that it's recommended we record the meeting so that we have documentation of anything that was said in the meeting. And yet, I bet we don't all do that. I know I don't, even though I know my emotions will color my remembrance of the meeting.

We're fortunate with the girls that they are extremely healthy, but with Bobby we've been through some scary moments medically. One thing we as parents can do to make sure we understand and heard correctly what was said in a meeting or appointment is to record it to listen to later. We could also take notes.

Here's the thing: how many times have you been to the doctor and forgotten all the big words said almost immediately? If we don't know the terms, we don't speak the lingo, we can get lost quickly. This is one of the reasons it's so important to become as knowledgeable about our health conditions as possible, including the medications and tests involved with managing that condition.

As a diabetic, I need to know what the A1C is. I need to understand what the numbers mean on my glucometer and when I need to worry. I need to be familiar with any meds for the conditions, and what the possible side effects are. I need to know what can happen if I don't keep my blood sugar at normal levels.

As the mother to a child with Factor V Leiden, I need to know what that means, what to look out for, how to handle injuries, when to get him to the doctor, what complaints to pay special attention to. When he had his stroke at nine, he complained of a headache that we did not initially take seriously. You can bet we take his headaches seriously each and every time, that we keep an eye on cuts, bruises, that we look out for signs of a clot in his legs. You can bet that I take notes when we have to discuss his condition with a doctor, that I'm current on the research literature, that I have a clear idea of the potential risks of medications that can be used to prevent overclotting.

I'm not saying I started out getting all of this. I'm saying I learned it because of not getting it, not understanding the big words, the scary forecasts, the medical tests. And each time a new issue presents itself, I'm still back in that emotional jungle trying to make sense of the words I've just heard a doctor say.

We need to learn to back up, stop, breathe, ask again. We need to learn to record important meetings so that we can replay it over and over until we are sure we understand correctly, that we armed with the best information so that we can make the most informed decisions. In this way, we give ourselves the tools we need to navigate the uncharted territories we find ourselves in. We reduce our fear of the unknown and we spare ourselves potential misunderstandings. We give ourselves a measure of control over the situation. Information is power--and it's important that our information be accurate so that we don't use that power to make foolish, dangerous decisions.

The Decisions of Life and Death

2012-01-16T10:27:00.001-06:00

I wonder...the doctor who told Amelia's parents he wouldn't recommend a transplant for their daughter based on her cognitive disability--does he love an animal? Would he do everything he could for a beloved pet, spare no expense?

Amelia's story has been in my thoughts all weekend, as it has for so many in the community: the heartache, the fear, the outrage that her parents and family must be feeling. The very real frustration that CHOP can't talk about this case, can't do anything but offer platitudes and reassurances that they're committed to offering the best care, has to be something that many of us are feeling. Yes, privacy laws are important, but sometimes it feels like companies and organizations are more concerned about covering their asses legally than in being honest.

All of this swirls through my head, makes me sick to my stomach, but so does the fact that once again, our Frankie has the UTI issues again. Will we have to put him down? How many vet bills the size of car payments do we make before we acknowledge that we can't do this anymore?

Here I struggle with the weight of the decision of life and death for my pet, and I wonder what Amelia's doctor felt when he met with her parents and said:

“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays”

Did his stomach drop? Did he feel regret? Did he imagine what it would be like to hear those words? Did he look at the sleeping child across from him and feel anything? Did he?

Will he, given the outpouring from the community, change his recommendation when the ethics committee meets? Will he see Amelia as a child worth saving? Will he learn not to equate cognitive disability with a lack of quality of life? How do you write off a two year old?

The reality is we won't know those answers. We'll be left wondering. Hopefully, Amelia's parents will get some kind of answer soon, and we'll get updated, but like most stories in our community, we'll never know the full story.

Our society has never valued the infirm, the mentally disabled, the different. Never. We have a horrendous history full of the inhumane treatment of the most vulnerable members of our society. Abuse, restraint, horrible acts occur each and every day. In state hospitals and institutions, the mentally handicapped are denied appropriate medical care based on a doctor's position that their quality of life makes the care not worth it. People are allowed to die who could otherwise be saved, and it happens every single day.

And yet, we love our pets, spend 41 billion dollars a year on them. Even now, my stomach is twisted in knots because we don't seem to be able to permanently knock out the urinary tract infection in our Frankie. As long as he's on the antibiotics, he does okay, but within days of stopping them, it reoccurs. We didn't rush him to the vet today, though, because we can't afford another car payment of a vet bill. Instead we called and asked for more antibiotics, which Rick is out getting. And I am sitting here with thoughts of life and death and dollar signs swirling in my mind while I think of a little girl whose value and worth is priceless, incalculable, and whose parents must be going through hell right now.

Value.
Worth.
Quality of life.

We need to value our most vulnerable. We need to feel that we are held in a sacred trust to offer the best of care, the most tender of feelings to those who cannot care for themselves, who need help. We need to imbue in our care for them our highest ideals.

Matthew 25:33-40

33 He will put the sheep on his right and the goats on his left.

34 “Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. 35 For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, 36 I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’

37 “Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? 38 When did we see you a stranger and invite you in, or needing clothes and clothe you? 39 When did we see you sick or in prison and go to visit you?’

40 “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’

When the Disability Community Works

2012-01-15T09:23:00.001-06:00

We're used to outrage in this community, of hearing or reading a story and running with it. Sometimes, it's to attack and condemn other parents or individuals, but sometimes, when the disability community works well, it's to gather together to bring about change, to fight for a family.

This time, it's to protest a doctor at CHOP who told a family he would not recommend a transplant for their young daughter because of her cognitive disability.

The mother, Chrissy, writes of this horrifying conversation at wolfhirshhorn.org in a post titled "Brick Walls." We can all imagine ourselves in this situation, but even this imagining cannot come close to the sheer terror, rage, and grief that Chrissy and her husband must have felt.

In a voice that mimics hers, I snort, “Well, what happens if you die tomorrow? Who will take care of your children? Your responsibilities at work?” She breathes in and her eyes widens. “Right!” I throw at her. “Neither of us can predict the future and we shouldn’t try. But if Amelia does not have this transplant she has no future!”
The doctor interrupts. He puts his hands up and tries to take a stern voice with me. “These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.”
“DO OTHER CHIILDREN WHO HAVE A TRANSPLANT TAKE THIS MEDICATION?”
“Yes, but it is different for her. She is already brain damaged and mentally retarded.”
He pauses as if he is choosing his words carefully. “I have been warned about you. About how involved you and your famliy are with Amelia.”

The community has rallied around this family, inundating CHOP's facebook wall with comments decrying this doctor's actions and demanding action. A petition has been set up at Change.org. People have been using their blogs to spread the word and advocate action. It is our community at its best. Let us hope that it will help this family quickly have a positive resolution. I encourage everyone to offer support to this family and to sign the petition. Like her page at facebook and show you care.

What follows are a list of the blogs dealing with this topic, which I will keep updated as I come across new blogs.

ABC News

A Blog About a Bloke--Living With WHS

About.com Pediatrics

Accepting Abundance

Age of Autism

A Little Something For Me 1

A Little Something For Me 2

Amy Julia Becker

Another Suburban Mom

Art Caplan

Associated Press

A Tall Drink of Sweet Tea

Autism Wonderland

Autistic Hoya

A Walking Contradiction

Backwoods Housewife

Barriers, Bridges, and Books

Be Well Philly

Big Blueberry Eyes

Bird on the Street

BLOOM - Parenting Kids With Disabilities

Bringing the Sunshine

Busy At Home

Catholic Philly

CNN (video at top of post)

Compatible with Joy/ Trisomy 18

Countering...

Courier Post Online

Creating my Own Little Nirvana

Discovering Downs

Dom Giordano Show

Dominick Evans

Fairfield Patch

Donna Thompson

Fighting Monsters With Rubber Swords

Fox News

GMA.com

Happily Eccentric

Healing, Empowering and Thriving

House of Sloth

I Can Has Autism

I Like it Frantic

James's Project

Jewish Journal

Journeys with Autism

Kidneys and Eyes

Kristina Chew at Care2

Life & Oh La De Dah

Life With Joey 1

Life With Joey 2

Life With my Special K's

Lisa Belkin (against Amelia being placed on a transplant list)

Little Bit Quirky

Love That Max (links to contact info at CHOP)

Loving My Little Ladies

Mom Blog

Moonlit Lily

NJ.com

Not Dead Yet

Our Transplant Journey

Parenting Isn't Pretty

Patti's Blog/ Advocate for Elders, People with Disabilities and Their Families

People I Want To Punch In The Throat

Penny's Peeps

Pipecleaner Dreams

Praying for Parker

Raising Asperger's Kids

Really What Were We Thinking

ReunifyGally

SFGate.com

Simeon's Trail

Social Security Disability and You

Special Children at About.com

Special Education Advisor

Special Olympics Blog

Strollerderby

Support for Special Needs

Susan's Blog

Susan Senator at Huffington Post

Teaching the Boy

The Loaded Diaper

The 3rd 21st

The Anchoress

ThAutcast

The A Word

The Crescat

The Domestic Goddess

The Flight of Our Hummingbird

The Guardian

The Mentalist Mom

Three Puzzle Pieces

Through A Looking Glass

TIME

Trentonian.com

Uncommon Sense

Transplant Headquarters

Wade Today

WBAL.com

Who Says 8 Is Enough?

Who We Are (please note that CHOP has not denied the transplant--the ethics committee hasn't met to discuss Amelia's case)

Why I am Catholic

you-leave-me-breadless

Please let me know if there are blogs I've missed.

From CHOP, new comment on their facebook page:

Children's Hospital of Philadelphia
To our Facebook community:

We hear you.

We feel and understand your frustration, but we are unable to comment publicly on individual cases.
Each child is unique, and our goal is always to provide the best possible medical care for each individual patient.
Please know that CHOP strives to partner with families and make appropriate decisions based on input from many sources, none more important than the patient’s family.
Anything less would be completely inconsistent with the values we work to uphold every day.
We are also taking action to review all existing policies to make sure that they reflect the core values we live by, including our deep commitment to not discriminate in any way.
The Children’s Hospital of Philadelphia is an institution. But more important, we are a team of men and women whose life’s work and greatest passion are the care of all sick children and the support of their families. To be entrusted with the care of these children is a privilege, one we take with the utmost seriousness.

Let's hope that this will lead the ethics committee to careful deliberation and this doctor to reconsider his beliefs about those with cognitive disabilities.

Supposedly, according to Lisa Belkin, Amelia can receive a live-donor transplant at CHOP. (updated as of 1/16/2012, 2:40pm central time). According to other stories, the Riveras have been asked to come in for a meeting.

http://philadelphia.cbslocal.com/2012/01/16/childrens-hospital-denies-withholding-kidney-transplant-for-disabled-girl/

"Rivera, a bit surprised by the huge response, has declined to comment further, saying she likes CHOP and is still hoping for a happy ending in her daughter’s case. And late this afternoon she told KYW Newsradio that the hospital had contacted her to arrange a meeting to discuss her daughter’s case further."

Contrary to Belkin's assertion that CHOP agreed to the live-donor transplant, by the way. http://www.huffingtonpost.com/lisa-belkin/denying-transplant_b_1207630.html

http://yourlife.usatoday.com/parenting-family/special-needs/story/2012-01-16/Team-Amelia-backs-transplant-for-special-needs-child/52603482/1

Chrissy Rivera, a 36-year-old high school English teacher, says she hopes Amelia will continue to receive care at CHOP, where she's been a patient since infancy. "We've had many positive experiences at CHOP," she says. "This was one doctor and one social worker."
But she says she and her husband, a real estate agent, understand Amelia could die in six months to a year if she does not get a transplant. Right now, Amelia, who also goes by "Mia," does not talk or walk, but does smile, play, roll around on the floor, interact with people and "love her two brothers to pieces," Chrissy Rivera says. "She's a magnet when people meet her."

http://www.nbcphiladelphia.com/news/health/Mom-Claims-CHOP-Refuses-to-Give-Mentally-Disabled-Child-Transplant-Surgery-137437788.html

The doctor told them that he would not recommend a kidney transplant for their young daughter because she is mentally disabled, Chrissy Rivera said.
"And I said to the doctor, 'is this what you want us to let happen -- do you want us to let her die?' And he said 'yes,'" Rivera told NBC10 Monday.
Three-year-old Amelia Rivera of Stratford, N.J. needs the transplant because of complications from Wolf-Hirschhorn syndrome, described by WebMD as "an extremely rare chromosomal disorder caused by a partial deletion (monosomy) of the short arm of chromosome 4."

View more videos at: http://nbcphiladelphia.com.

Update from Wolfhirshhorn.org:

http://us4.campaign-archive1.com/?u=e5c154ae84117c31d09f67720&id=b4fa994a94:

Hello wolfhirschhorn.org followers:
Over the course of the last week, there have been new updates on the situation with Mia and the Rivera's status with CHOP. Over the weekend, a meeting took place between a number of the key leaders of CHOP, the Rivera's and wolfhirschhorn.org. The purpose of the meeting was to get an understanding of the chain of events that led to the "Brick Walls" posting. The meeting lasted a little over 90 minutes and the Rivera's had an opportunity to tell their side of the story and the related concerns about Mia's needs and how CHOP handled the situation. CHOP agreed that the system is broken and that they are taking steps to fix the process. In addition to addressing Mia and the next steps with her transplant discussions, a few suggestions were made to CHOP about their involvement in a more macro view of awareness around transplant rights for the disabled, and public and medical community education around the "mentally retarded" phrase. CHOP agreed to follow up and communicate their action items by the end of this week.
Mia and the Rivera's are planning a visit to CHOP in the near future to determine CHOP's role in her transplant and her on-going medical care. Once that meeting takes place, we will issue a statement on the status of Mia, her care, and CHOP's involvement moving forward.
To keep up to date on details of this story, LIKE us on Facebook (https://www.facebook.com/wolfhirschhornawareness) and follow us on Twitter (@wolf_hirschhorn).
Thanks!

Jingle Jangled

2012-01-14T09:33:00.000-06:00

It's weird, really, how people can make an observation about you that you feel misses the mark completely, doesn't represent your internal reality at all. It leaves you wondering about whether you wear the mask so well it fools people or if the person simply saw what he/she wanted to.

So I can be feeling jingle jangled, internally stirred up, and not show it? Well, I guess that's good, right? Or perhaps feeling that way gave me a healthy pinkness to my cheeks, so that I garnered the comment that I looked good. Who knows?

What never ceases to amaze me is how little of our internal lives really registers in the outer world. We live our lives keeping most of ourselves hidden even from our closest friends and family. It's not necessarily intentional, either. It's just that there's no way to share all the internal dialogue going on in our brains: our hopes, our fears, our worries. Even when we try to express the most pressing of these, we may fail to really communicate just how serious something is to us. And if we do feel we've communicated it, it doesn't mean the other people will hear us, that our communication won't be filtered through their preconceptions and be garbled.

It's a wonder, honestly, that anything ever gets conveyed accurately. Sometimes what we display and share is intentional, but other times, we're simply so wrapped up in trying to survive the moment or the day that we have no idea what it is we're sharing with others.

I've long ago decided that we are walking wounded, even when we don't acknowledge it. So much of what we are is below the level of our consciousness that even we don't know ourselves or why we act the way we do.

We may be feeling jingle jangled and not know why, not understand what initiated that physiological response. We'll look for an answer, rationalize the emotion, but we are likely to be wrong in that rationalization. Knowing that, why bother trying to figure it out? I'd rather not know why I feel jingle jangled than guess incorrectly.

It's impossible, of course, to keep in mind that all of us act unconsciously then rationalize the behavior. Instead, we react first, thinking we're in control and so is the other guy. And the dance, the improbable, incredibly complicated dance we do with ourselves and others, continues, sometimes energizing us and other times simply wringing us dry and leaving us mystified at our actions and the actions of others.

We collapse in bed, desiring sleep, rest, a break, only to be caught up in that damned dance in our sleep, with incredible, active, convoluted dreams that leave us exhausted upon wakening, and for a moment we can understand Michael Jackson's use of propofol to simply turn himself off.

To just be: to be still, to be quiet, to be at peace. I don't think I've ever really experienced that. Meditation leaves me antsy. Yoga makes me laugh: some positions really help both ends breathe, you know?

Ah, who am I kidding? Me and a still mind? Nah. Although, if you can explain to me why I absolutely had to have these, you'll understand me better than I understand myself. They are fricking awesome, by the way, and huge!

Ibit Redone, or Looking at What We Carry With Us

2012-01-13T08:51:00.000-06:00

Little Dude as a kitten, just a month after losing Ibit.

Tiny, little thing.

Ibit in the spring.

Ibit.

Little Dude grown and Ibit's doppelganger.

Having a pet who's a look-alike to a beloved but lost pet is bittersweet. Pain and love flood through you at the same time. The bigger Little Dude gets the more he reminds me of Little Bit (Ibit). Obviously, he's made himself at home, and to see him next to Mabel, who has space issues, shows you just how much he's insinuated himself into not only our hearts but with the other cats as well.

People often have the same reaction--they remind us of others we have loved, and we gravitate towards people who will potentiate those same neural pathways. Bobby has always intermingled in my mind with my baby brother, Kyle, who is just younger enough that he brought out my maternal instincts some of the time when we were children.

Sometimes I wonder if we deal with the loss of a loved one better when we find people similar to them who will trip that same cascade of neurotransmitters. I think it's why we find ourselves drawn to things, too, that remind us of the one we love who has died.

Each day I invoke my grandmothers in different ways. One grandmother's perfume triggers in me a reminder of her grace and dignity and those days I need an extra dose of grace, I wear her perfume. The other grandmother collected cheap cat, owl, and other figurines, showcasing them in an expensive curio cabinet. So you know I have a small curio cabinet in my bathroom, with one shelf devoted to her figurines and another devoted to my rubber duck collection. Each time I enter my bathroom, grace and kitschy humor are immediately there for me. It's a nice combination.

We should all be so lucky to end our days and begin them with reminders of grace and humor and the liberation of being true to our individuality. Both my grandmothers were strong women in their own way. They were unique and handled their challenges in different ways. I have both of them in me, the good and the slightly dysfunctional, and it's a wonderful blend.

May you carry your loved ones with you each and everyday so that you are never alone.

Bitch, Rant, and Moan (and writing with a migraine)

2012-01-12T07:01:00.001-06:00

In this first week back to work (I taught online the entire break, so it wasn't a complete break), I have had to adjust to getting back out into the world at what I will always consider an ungodly hour. I have had to adjust to waking to a mother-fricking alarm again as I was finally able to sleep later after all those years of being conditioned as an Army wife (and mom of school-aged kids) to getting up at 5:30 without any need for an alarm. I hate alarms with a passion now. Loud, annoying sons-of-bitches. Hey, at least I didn't awaken this morning like Rick did to a voice repeating over and over: "Get dressed. Feed the cats. Get ready for work." Apparently, it was rather startling; Bobby had programmed his phone (which he left out in the living room) to use his recorded voice as his alarm clock. Ingenious, really, and impressive. Yay, Bobby! On the other hand, dude, how's it going to work for you if you don't take the phone to your room?

Onto more ranting.

I've had to adjust to make-up again and setting aside my beloved snarky tees for more appropriate clothing (yes, my snark lives on in often inappropriate teeshirts). I like my tees. I don't care if they make me look like a short, squat linebacker, either. The purple hair is distracting from my solidity, right? Now, here's what's weird. I've grudgingly worn makeup for years, but rarely lipstick because I had never mastered getting it on correctly. I can, now, though. Yay, skill-building in my forties. That's kinda weird, but not what I was meaning: now I feel naked and incomplete when I put makeup on and DON'T put lipstick on, too. What the frak?

Okay, so it's Thursday of my first week back. I'm handling it, hee, as gracefully as I can, which pretty much means I spend some time growling low in my throat as my body protests everything, every extra movement (especially the chasing of Frankie around the house to give him meds twice a day). I still have a freaking cold. Yeah, that's right. I ended the fall semester sick, and I'm starting the spring semester sick. Stupid, freaking bacteria and viruses.

I couldn't even really explain why I'm so out of sorts. I want to go back to work. I miss being in the classroom, where I have energy and am happy. So maybe part of it is that I'm ready but still have to wait until next Wednesday to see students. Come on, Wednesday!

*Mood no doubt influenced by migraine.

Monday Monday

2012-01-09T14:59:00.000-06:00

The weekend's picture posts showed you our Tardis door project and the giant buddha head taking up residence. Here are some other things that have been going on.

Lily and Rosie continue their growth spurts unabated.

Lily is about three inches shorter than me now, and Rosie is catching up!

I dyed my hair a purple/black blend...

Frankie's taken to watching us closely for fear of being medicated.

Mabel continues to show her haughty disdain for all the shenanigans.

The collection of possible war movies to show the comp 2 classes continues to increase.

My fascination with taking pictures of the moon remains unabated.

Giant Buddha Head

2012-01-08T11:51:00.004-06:00

Being the Change We Want (or a good dose of humility never hurts)

2012-01-08T00:00:00.000-06:00

This piece was posted yesterday at Thinking Person's Guide to Autism. In order to keep the conversation in one place, I've closed the comments here.

I’ll have been involved in the online autism community forthree years this March. I’d say the community has changed, but I’m thinking it’smore that I changed over the years. People still bicker about the same kinds ofthings (some of the people are the same ones who’ve been at it for years), andthe divides seem to be more entrenched than ever before, if you go looking inthose places. I try to avoid that, now.

Sometimes, when I make the round of blogs, of bloggersposting their deepest feelings, only to be roundly attacked by others, I wantto respond, to get into the middle of things. Most of the time, though, now, Idon’t. I shrug and move on. I ask myself first what possible good could comeout of my investment.

It isn’t that my positions about autism have changed much. Istill don’t think vaccines are implicated in autism. I still have a strongaversion to the use of untested and potentially dangerous treatments. I hate tosee people throw away precious resources on woo when their efforts, time, andmoney could be better used. I’m still adamantly opposed to those charlatans whotake advantage of parents who will do anything to help their children achievetheir potential.

What has changed, though, is how I believe individuals shouldbe approached, how situations should be addressed. Where I once found myselfoutraged, angered, frustrated and hell-bent on calling out the things I foundhorrible and the people doing those horrible things, I tread more lightly. Itry to avoid being reactionary. Is it really horrible? Are they acting out ofmalice? Is there a better way to deal with the situation? Where possible, Ithink avoiding directly rebutting another person’s words and instead presentingthe evidence against a treatment is better than directly addressing anotherperson. It took some hard knocks to come to that realization, but it’s one I’mworking on doing.

I don’t want what I do to be a reaction to other people. Iwant it to be proactive and compassionate. I’ve written over the last yearabout how I regret the way I first approached the vaccine wars. Almost withoutreservation, I am disappointed in myself over what can be perceived as attackingpeople personally.

Over this last year, my time as a hospice volunteer hastaught me how to just be there for families undergoing the worst times in theirlives; I’ve learned how to accept without judgment the way individuals facetheir challenges. Being in a position where that’s my primary role--nonjudgmentalsupport—has made me more reflective of my actions and beliefs. We all do thebest we can with what we’ve got. Some of us face the challenges moreadaptively. Some of us don’t. Some of us are great at putting on a mask andhiding our agony. All of us deserve respect and compassion as we go through ourlives.

And it’s those experiences, coupled with Kathleen’s and mywork at the Autism Blog Directory, that have changed how I feel about people onother sides of the “divide.” It’s a divide if we let it be, if we think there’sonly one right path, only one right way. I’m tired of the divides, of theus-versus-them approach.

One of the best things I did was get involved in my localcommunity. It meant wading into the local Autism Speaks to do it, and while I knowintimately the objections many in the online world have towards theorganization, working on the walk, meeting families who believe a whole host ofthings differently from me, forced me to let go of anger at people who choosewhat I consider, based on the evidence, to be pseudoscience. I backed up andshut up. In most situations, people don’t need to be directly confronted ontheir choices; it won’t make them change in the direction the other personwants them to. It simply entrenches them and deprives both parties of a chancefor support, for genuine friendship, for growth.

I still write evidence-based pieces, but I refuse to be reactionarytowards others in the community. Attacking others just makes their lives allthe more difficult, and I really don’t like the idea that I’ve made someone’sday harder, that I’ve hurt someone who was already struggling. Really, thethought that my words could have pushed people further to the edge, deeper intowoo, made them more bitter, angrier people makes me ashamed to have writtenthose words, and for those I harmed, I’m sorry.

That doesn’tmean I’ve gone all soft and mushy with no clear positions. There are somethings I am certain are wrong. There are people in our online community who I believedo tremendous damage to others and who, I think, do so intentionally with thesole purpose of getting ahead. I think those people are in the minority,though, and most people are doing the best they can. I think there’s arespectful, appropriate way to counter the woo and those who peddle it, and Iwork harder now to find that way.

Countering, my blog, has absolutely changed in the last 34months. I think it’s a change for the better, and I know that how I approachthings, how I handle adversity will continue to evolve. Do I miss the chancesat snark? A little bit, but it’s just not worth it if that snark hurts someoneelse. My kids are watching me, reading me, looking over my shoulder. They’reout there, interacting with the world, and if I want others to show them empathy,compassion, patience and acceptance, then I must pave the way by being that kindof person. We must, I think, ultimately be the change we want to see.

Tardis Door!

2012-01-07T17:47:00.000-06:00

The Fear of the Future

2012-01-06T07:27:00.001-06:00

One thing that seems to be consistent among parents with children on the spectrum (heck, with all parents!) is fear for what the future will hold. While we battle school systems, the medical system, and bureaucracies to get what our children need, we also must project into the future and try to equip our children with the tools they need to succeed or to set in place the environments that will protect them and allow them to have a good life.

Unfortunately, sometimes the real-time struggles are so time-demanding that parents don't have the opportunity to work towards that day when their disabled children are adults, and even when they do, and they work to move heaven and earth, it doesn't always work out as planned.

I can understand the fear for the future, although there are some things that I cannot relate to. I've read parents who fear when their child ages out of the educational system and what they will do, and that's not something I dealt with, as we homeschooled Bobby from the age of nine. And it's not something I'm going to worry about with the girls, because even though they are on the spectrum, they won't be in the educational system till 21. I anticipate and plan that they'll be out of the school system before they enter high school. It'll be for different reasons than it was for Bobby; the girls are well-equipped and should be able to start college part-time in their earlier teen years.

The future is unknown, and even when we construct elaborate, detailed plans and do our best to make them happen, the truth is that the future is out of our control. All we can do is plan, plan some more, make contingency plans, be flexible, revise our plans, and work hard NOW to arm our children with the tools they'll need to be as autonomous as possible.

We should also be prepared to yield our authority and our control over to our adult children and allow them to make their own decisions as much as possible. We should work together. Bobby is now 22 and he's increased his time in the kitchen at Meals on Wheels to five days a week, and starting next week, he'll get there earlier so that he is volunteering 40 hours a week. It's something we've discussed and worked towards together. We've done it with no governmental interference or assistance, with no job coach. We've done it together, on our own. We've been lucky that the kitchen staff are kind and care for Bobby and welcomed him there. It's Bobby's hope and ours that someday these years of volunteering and learning how to interact in the real-world job setting will lead to a paid position in a kitchen, either there or elsewhere. It may not happen; that is beyond our control; it's still worth working hard for.

What is not beyond our control is the effort we make to ready him for independence (or semi-independence). What is not beyond our control is slowly loosening our hold and allowing him to make these decisions with our support and blessing.

Bobby still struggles. He has a hard time remembering names. He has a hard time communicating clearly the chain of events or what other people said or did. His sense of time is still really, really different. We keep working on it. He keeps working on it. And that, in the end, is what's really important: that we continue together to work on attaining new skills, to improving our abilities to relate to each other and to navigating this scary world where anything can happen.

Home Again, or Chasing Frankie around trying to give him meds

2012-01-05T07:01:00.000-06:00

Frankie boy is home again and he and I are much happier now that we're together again. He slept on my chest last night and when I moved to the couch because of my back, he followed and curled up in my arms. Boy, how I missed that in the two days he was at the vet. It messed with my sleep to have him gone.

Twice a day I get to chase him with a syringe of antibiotics to somehow squirt in his mouth and then get him to swallow it. It's a heck of a dance, one we had just finished shortly before the infection put him back at the vet. It's one I'm fixing to do this morning, terrified at the thought of the infection occurring again. His vet bills in December and this month have totaled two car payments, and without my dad's ability to loan me the money for this last vet bill, I shudder to think of what we would have had to do. So here's hoping this time's the charm. We replaced his litter box, dumped and scrubbed the other boxes. He's got his prescription food, and I'll be watching him like a hawk and encouraging lots of water drinking.

Trust me, I've been there with the UTIs way too many times, enough times that I'm on maintenance antibiotics and have been for a year now. I'll do whatever it takes to help Frankie avoid that misery again.

Winter Garden

2012-01-04T15:03:00.000-06:00

Resolutions...Huh?

2012-01-03T09:16:00.000-06:00

We were treated to fireworks for hours on New Year's Eve and again last night, right outside our front door, courtesy our neighbors, ringing in the new year in a splurge of loud bangs and whistles and booms. We didn't watch them; we sat in our living room and watched our shows with the kids, who NEVER once wondered what all the racket outside was.

I know that lots of people think the new year is a big deal, get excited about having a new number to remember to write, come up with big resolutions and plans, but I've never quite gotten that. See, for me the new year begins in the last weeks of August. I don't think of a year as going from January to December, but from August to May (with a nice three month break); it's the result of having been involved in education most my life and planning my calendar around my teaching schedules and the kids' school schedule. And I don't celebrate or come up with resolutions, but I'm not much of a celebrating kind of person. It takes my mother and her love of seasons and holidays to bring me out of that rut.

I like the rhythms, the cycles of time. I like order. I like repetition. And so I like the turning of the calendar year, the new months, time ticking by. I like my lists of things to do and checking them off. I take a deep, abiding pleasure in this, but I don't feel a need to celebrate, to deviate from the routines of our lives.

Routines and predictability are comforting. I'd make a resolution to be more impulsive, spontaneous, but I don't really want to, and it would defy the purpose of spontaneity. Besides, I have my various obsessions that come out of nowhere, whirl me around, and then die out as quickly as they blared in, leaving me looking around, wondering what the hell the three pairs of red boots are all about. Oh yeah. This month it's red. I need red things. A red coat. A red sweater. Red flip-flops. Red tennis shoes. Red mules. Red tops. Almost ordered red high heels yesterday before I reminded myself I don't wear heels. Ordered red pants before I could stop myself. Where the hell did the red obsession come from? See, that's spontaneity. Well, it would be if it weren't likely that next month will see me thinking I don't have enough green things...or some other thing that takes me completely by surprise. After all, I still have no idea why I love roosters and chickens, but I do. And sock monkeys. And cats. And skeletons. And all things sci fi. I'm a hopeless case.

I'd make a resolution to not obsess on things, but fat lot of good that would do. :)

Round Two: Here We Go

2012-01-02T10:12:00.002-06:00

Frankie's back at the vet again, as he's having difficulty urinating again. He's got a heck of a communication system developed to show me. Yesterday it was climbing into the tub and trying to go in front of me and this morning it was jumping up on the new couch, turning his backside to me, looking over his shoulder at me as he hunkered down, nothing happening. On the one hand, thank gods nothing happened. It's a freaking NEW couch. On the other hand, he couldn't go!

It hasn't even been three weeks since his last stay at the vet and the car-payment sized vet bill. There's only so many of those we can afford before we'll be forced to make a decision that will break my heart.

This giant, orange linebacker of a cat means the world to me. I hate the fear that leaps in my throat and lodges, the sick twisting in my stomach that is the fear of being forced to make decisions I don't want to have to make.

For now, though, he's at the vet--had a shot of muscle relaxant and antibiotic and is being observed. We'll know more this afternoon, and I'll just have to choke back the fear and wait.

He's worth the fear, the wait, the worry.

Oh, How They Grow

2011-12-31T09:20:00.001-06:00

I look at them, together, and am amazed. Bobby is 22 but looks 16 at the most. He's a few inches taller than me and a few inches shorter than his dad. Lil, at 10, is growing taller and curvier by the day. Already her feet and hands are longer than mine (of course mine are short and wide, so not hard to do), and she's only three inches shorter than me. Rosie is still so little next to them, but at 8 is beginning to grow out of sitting in my lap.

They are happy kids, still entwined in each other, loving to get together with their Nintendo DS and battle their pokemons with each other. The girls run to Bobby and ask for his help, constantly distracting him, but the sounds of their loud, animated conversations and infectious laughter is sweet to hear, even when it's frustrating because it's a school morning and we're trying to get them all out the door on time.

I don't know how they're going to change over the years, how far they'll go, what they'll do, but I'm enjoying the journey, even though it's filled with worry and anxiety. I want the best for them. I want them to be happy and of service. I have to stop to remind myself that they are. They're already there. Whatever else they do, wherever else they go, they are sweet people who care about others and want to be of help.

Bobby's expanded Meals on Wheels to five days a week, and he's thrilled. We're building him up to being there volunteering 40 hours a week. We've switched the SPCA to Saturday, but have to work out the timing so he gets there when he can be let in. Last Saturday worked out, but this morning he knocked for over five minutes without getting in. No big deal; he and Rick are off running errands instead. I know he wanted to be with the cats, but he adjusts pretty well now to glitches.

He loves to paint and draw, so he got a new art set for Christmas. It's hard to tell, but I think he liked it best, although he was really thrilled with a huge skull wreath that lights up, too. He's a funny young man, and I love watching his interests change and expand. Get him paints or anything with a skull, and he's happy. Or Pokemon or Yu-gi-oh. He's generous, too, and spends his money on things for others. I'm proud to say I'm his mother.

If I had to describe my Lil in one word it would be exuberant. She does nothing halfway. From meltdowns to elation, she is fully into the moment. She cracks me up. She's smart and stubborn and yet has some gaps in what she understands so that you can't help but giggle, like the time she melted down because she had a math problem that wanted her to draw a rectangle 10 miles by 20 miles on a sheet of paper and she couldn't do it because it wouldn't fit. It's going to be such an interesting journey with her. She's spent the entire school year wearing Spongebob tees to school everyday, but hasn't worn Spongebob on break at all. She's saving them, she says. I'm just glad to see other clothes being worn.

Dreamy. That's Rosie. And a little secretive. She's got this little smile that lets you know she's holding back, keeping things to herself and she knows it. If she doesn't want to answer a question, you get that smile and no words. She still puts her shoes on the wrong feet and does it on purpose just to mess with people, namely me and her grandma. She carries a half dozen toys with her throughout the house, whatever is her favorite batch at the time. She's the baby of the house and knows it, revels in it.

They grow, even when it seems that progress is slow, like with the boy; they grow. The journey is not easy, but it's not meant to be. Learning that lesson, that sometimes things are hard, that's the lesson we have to learn: even when it's hard, even when it hurts, we have to keep going. We have to keep moving forward, and when we find ourselves treasuring all those moments, even those that hurt, we know we are on the right path: we are embracing our entire journey, and we, too, grow.

Abuse, Restraint, and the Uphill Battle

2011-12-30T10:32:00.000-06:00

Many in the autism community have already heard of the horrifying story of the young autistic boy being confined in a bag (the mother calls it a gym bag in this video). Lydia Brown, of Autistic Hoya, immediately acted, setting up a petition on Change.org that has nearly 150,000 signatures, a facebook page, and speaking to the media about this case. We send our children to school in the hopes that they will be well-cared for, respected, and not abused, but too many of our children are abused, are bullied, are mistreated.

And yet, in covering previous restraint issues like a Florida school using a full-body restraint system on children, what's amazing are the people, including parents, who support the use of such things. You would think outrage over this would be universal (at the very least from the parental perspective), but the reality is that such abuse occurs because there are parents and professionals (and people in general) who wholeheartedly approve the use of restraints. The Judge Rotenberg Center continues to exist because parents went to bat before the state legislature praising the use of shocks on their children. Parents even use the shock systems when they take their children home for visits.

How could anyone do this? Part of it is the dehumanization of individuals with disabilities--the tendency to place anyone different in our outgroup. It is the removal of empathy. No one feeling empathy towards an individual could place a nine-year-old boy in a bag and tie it up and sit calmly by the bag. No one feeling empathy could place a child in a full-body restraint face-down and think that act is acceptable. Yet, it happens all too often.

Restraints, chemical and otherwise, are unlikely to go away any time soon. They are prevalent in institutions and prisons and are (supposed to be) used against individuals who are violent and out of control (when no other method will work). Regulations and oversight exist to try to avoid abuse of restraints, but that oversight is inadequate, and the people who are employed to care for these populations are often poorly trained, poorly paid, overworked and understaffed. The environments are ripe for abuse to occur. Add in dehumanization, lack of empathy, and the frustrations that come from being poorly trained, paid, and overworked, and it's inevitable.

The use of restraints are easier and faster than teaching an individual an appropriate way to respond to a person who is behaving disruptively or dangerously. In a culture in which spanking and smacking kids is still seen as an appropriate response, why is anyone surprised that restraint and abuse occur? After all, when nearly 1800 children in 2009 are believed to have been killed due to maltreatment and neglect in the US, and CPS reports in 2009 show nearly 700,000 unique children with substantiated abuse or neglect, why are we surprised when a teacher or a caregiver engages in abusive behavior? What should be really scary is that this is the tip of the iceberg--think how many cases of abuse and neglect are never reported.

In order to eliminate the abuse and mistreatment of our most vulnerable populations, we as a society must first change how we view violence in general and the use of physical force as a disciplinary tool. It is an uphill battle, especially given how the internet has allowed us to be anonymous and spew hatred without consequence. However, we are not without hope. Nearly 150,000 people cared enough to sign the petition at Change.org. Now, we need to act. As Lydia points out, ordinary people can make a difference. Stand up and speak out. Contact your legislatures and demand that legislation be passed calling for the equal rights of the disabled and disadvantaged to a safe environment where physical restraints are not allowed and that educators or caregivers who abuse and detain or restrain individuals are legally liable for their actions. If the act would be considered assault against a non-disabled individual, then it is for a disabled, as well, and all the more heinous an act because of the vulnerability of the individual.

It may be an uphill battle, but it is not a losing battle.

Busy is Better

2011-12-27T21:46:00.002-06:00

One of the perks of teaching college is the breaks. Between the fall and spring, I get a month off. Sure, I always teach a minimester online so I still have students to help, and the girls are home with me for two weeks. Still, that leaves lots of free time. Lots and lots of free time. I don't know what to do with free time. I don't like free time.

So what to do, what to do? We've been cleaning, sorting, getting rid of some accumulated extra stuff. I've been reading Evanovich's Stephanie Plum series, but I've only got three books left. Well, there's always all those cat calendars I've been holding onto.

Yeah, I can do something with over 100 cat pictures. Sure...

Bathroom door. Check.

Bedroom door. Check.

Hmmmm. Wonder what tomorrow will bring?

Slink (A Hymn)

2011-12-26T16:49:00.001-06:00

Upload MP3s using free MP3 hosting from Tindeck.

When Little Girls Sing

2011-12-22T10:41:00.000-06:00

The other day, the kids and I were on the way home from picking Bobby up at Meals On Wheels, and we were listening to music on the ipod that Rick has set up in my car with his and the girls' favorite songs. Now, I don't know where they find all of this music; I don't listen to the radio, don't keep up with contemporary music. Occasionally, I'll really listen to one of their favorite songs and take it apart, like the song Boston.

Most of the music they like is almost melancholy, and I believe it's the music, the melody, rather than the lyrics, that appeals to them, but every now and then I am floored when I really listen and try to pick out the actual words. Most of the time, I'm only playing it to drown out the ringing in my ears. The girls were singing along to this song called "Come on, Get Higher." Oh dear God in heaven, is there anything less appropriate for an eight year old and a ten year old to sing than this? And they were doing a beautiful job, too.

I miss the sound of your voice

And I miss the rush of your skin

And I miss the still of the silence

As you breathe out and I breathe in

If I could walk on water, If I could tell you what’s next

Make you believe, make you forget

So come on, get higher, loosen my lips

Faith and desire in the swing of your hips

Just throw me down hard

And drown me in love

So come on, get higher, loosen my lips

Faith and desire in the swing of your hips

Just throw me down hard

And drown me in love

I miss the sound of your voice

The loudest thing in my head

And I ache to remember

All the violent, sweet,

perfect words that you said

If I could walk on water, if i could tell you what’s next,

make you believe, make you forget

So come on, get higher, loosen my lips

Faith and desire in the swing of your hips

Just to throw me down hard

And drown me in love

So come on, get higher, loosen my lips

Faith and desire in the swing of your hips

Just to throw me down hard

And drown me in love

I miss the pull of your heart

I can taste the sparks on your tongue

I see angels and devils

And God

when you come on

Hold on, hold on, hold on, hold on - HOLD

Singing shalala la

Singing shalala lala

Ooooooo

Oooooooooooooooo

Come on, get higher, loosen my lips

Faith and desire in the swing of your hips

Just to throw me down hard

And drown me in love

So come on, get higher, loosen my lips

Faith and desire in the swing of your hips

Just to throw me down hard

And drown me, drown me in love

(come on get higher, loosen my lips)It's all wrong

(faith and desire at the swing of your hips)It's all wrong

(just to throw me down hard and drown me in love)It's all right

So, come on, get higher

Come on, get higher

'Cause everything works love

Everything works in your arms

Is it a gorgeous song? Absolutely. I love it, even more after really hearing the words. Is it appropriate for Lil and Rosie? No way. I'd have never willingly picked this as a song for my daughters to listen to. And if Rick had really heard the words? No way.

"The swing of your hips" from these babes?

If there's any doubt about the intent of the song, listen to the songwriter explain (not appropriate for children):

"I always wanted to write a song that people could have sex to."

He did, absolutely. Not okay for kids, though. Rick will redo the ipod and make a kid friendly version without this song because I seriously don't ever again want to hear my sweet girls singing these words, no matter how prettily they sing it:

Come on, get higher, loosen my lips

Faith and desire in the swing of your hips

Just to throw me down hard

And drown me in love.

If I Were to Write A Christmas Letter

2011-12-21T07:32:00.001-06:00

Well, I'd have to send Christmas cards, and I've only sent two...can't bring myself to do anymore...but, here is what I'd write if I wrote Christmas letters.

It was a long year here, and yet it raced by. Big changes here, some good, some difficult, some sad. I suspect most of you feel the same about your year.

It's hard to look back and remember all the high notes and low spots of the year, but I'll note that we lost friends, we lost pets, and we dealt with health issues (and crises), but we're still here, still grateful for what we have. We also made new friends, added new pets into the family, and were blessed to see my youngest brother get married in October to a lovely woman and add to our family more grandchildren for my parents. I'd say that for every low, there was a high, and that we gained.

The boy turned 22 last week. I like that number, its symmetry. He's now older than I was when he was born. Wow. He's been volunteering with Meals on Wheels in the kitchen for six months now and is a valued member of the kitchen team; they took the time and effort to ask him to change one of his days to the day they did their Christmas party so he wouldn't miss it.

He's attached closely to Little Dude, the cat he picked out after we lost Ibit. And just as importantly, Bobby is Dude's person. It's beautiful to watch them together.

Bobby's happy, he's healthy, and he's doing well. He makes an awesome spinach alfredo lasagna, too. He's working his way through the science fiction and fantasy books that I read and loved when I was a teen and in my twenties. It's a lovely connection and gives us things to talk about.

Lil's in fourth grade. So hard to believe. She's affectionate, lively, and totally absorbed in Spongebob. She's worn Spongebob to school EVERY single day this year. Impressive, to say the least. She remains hyper literal, which leads to funny exchanges where she has a conniption because one of her math questions wanted her to draw a rectangle 20 miles by 10 miles on her paper. It took awhile to explain scale, but once she got it, she was her cheerful self again. She's doing well; it's taking some extra effort at home to help her navigate the trickier aspects of fourth grade work like making emotional inferences from the text, but we're confident that we can help her get it figured out.

Rosie's in second grade and reads when you need her to be doing something else and won't read when she needs to. Go figure. She's an obstinate one. She's finally making her e's correctly, but decided to compensate by being extremely sloppy on the rest of her letters. Did I say she was obstinate? Last week she had to move her behavior clip down because she shoved unfinished work into her desk because as far as she was concerned, she was done. I can see her point; they're doing 100 addition problems per page and timing it.

As for the older generations here, well, we creak a little more, but our sense of humor is keeping right up with the creakage.

Some of us have a lot of gray.

Well, we would if we didn't keep it so short.

Some of us are hiding it under unnatural colors.

Of course, this shade's more discreet than October's color:

That's what my Christmas letter would say, if I were to write one. It would end, though, with these thoughts:

We learn each day to hold the people we care for a little tighter, to cut them a little more slack, to show our love and appreciation more. Our losses have taught us that. So have our gains. We've been blessed to have added to our lives some incredible people who have enriched our lives and made us feel lucky beyond belief.

It's been an interesting year, and we've worked to make sure our laughter has outweighed our tears. Sometimes, it's been a real close call and we've had to dig deeper to do that, but we have.

I hope that your Christmas holiday (or whatever holiday you celebrate this time of year) is blessed with laughter and hugs, with family and friends, and good food.

Friends in High Places: The Gift of Grace

2011-12-19T09:35:00.001-06:00

Little Dude, who is no longer quite so little, has made a habit of getting to the highest places he can. We've had to Dude-proof these spots, removing Rick's model cars from across the beam Dude loves to run across and my tea cups and other breakables. We've never had a cat quite so active as Dude. He runs from one end of the house to the other across the beams and tops of bookcases, having a blast, and likes to plop down up there to watch us all.

Such energy and grace; I'd love to have both. I managed to fall up our front porch stairs Saturday. How's that for grace? As for energy, I had to wait until Rick helped me to get up. I didn't break anything, but I'm sore and it's just not been a good couple months for my feet and ankles. Ah well.

Grace. We all could use more grace in our lives, and not just the physical kind.

Grace. When we give it, we get it back in abundance.

This week, as we go into the Christmas holidays, I send out to the cosmos and the creator, the hope for grace for the families who are coping with loss, for whom the absence of their loved ones rings loudly in their lives. I hope for grace for those who are consumed with anger and bitterness. I hope for grace for each of us, as we can always use a little more grace.

Of Cats and Community

2011-12-18T10:55:00.001-06:00

Cats are solitary creatures, content to sleep alone in a sunny spot or tucked into a dark corner of the closet. Not all cats are like that, of course, but there's no way to tell whether a cat will be a friendly sort who wants to sleep on one's head or an aloof one who pretends people don't exist except at dinner time. And there are those who alternate between friendliness and sudden batshit-crazy moments where they lash out and strike their person upside the head with claws drawn for no good reason other than the head was there.

Sometimes, people are a lot like that last category: friendly before going on a frenzy. The autism community is often like that: friendly and supportive only if we're on the same side. Heaven forbid someone be independent and want to make up his own mind about things rather than adhere to one side or another. As the bright boy says, drama--too much drama, as he sighs and wanders off to play with yu-gi-oh where there are clear lines--attack points, strengths, weaknesses all there on the card--clear boundaries and no extraneous drama.

Sometimes the real world drama and the online drama combine to be too much...and it's all been too much of late. Something's got to give. Guess what that is--all that extra drama that can disappear simply by closing a browser.

Feline Fine.

This week, my buddy Frankie got sick with a urinary tract infection. I rushed him to the vet in a panic, my heart in my throat. Frankie spent the night and the entire next day at the vet while I fretted and pestered the clinic about his condition. They cathed him and gave him antibiotics, and he is good as new now. I have to give him antibiotics twice a day for a couple weeks and he's now on the prescription urinary tract food instead of the store bought food. He's back to sleeping on my chest and all feels right in my world. Amazing how one animal can do that. I'm so glad to have him back that I'm holding him a little tighter and calling for him when he disappears for a secluded cat nap.

Escaping into books.

There's a part of me that's just shut down right now, that says enough's enough--the online dramas in the autism world just aren't worth wading into, at least not directly, so I'm trying to read for fun...trying to stay away from autism books, autism blogs, taking a break from all of that, except for those blogs where I know I will be uplifted and be able to share support.

It feels like too many people out there are interacting for the lone purpose of tearing others down or, just as bad, to top-dog or manipulate others. I don't get how people can demand acceptance and the freedom to say whatever they want without consequence and behave however they want and then beat up on others for expressing their own feelings. Does that make a bit of sense? And the unwillingness on the part of some to ever give another person the benefit of the doubt or the chance to grow, learn, and change--it's bullshit, and since I don't tolerate that well, the only way to responsibly deal with it is to distance myself and not engage.

Here's the thing -- I know I've written things that tore people down, caused them grief, and almost without exception, I regret that. How was that helpful or compassionate? It wasn't. I think ideas and misinformation can and should be tackled, but that there should be ways to do that without tearing PEOPLE down.

Sure, there are people I think are off the deep end, but it's probably not helpful to me or to those individuals to point that out directly. And some battles aren't worth directly engaging in. Instead of pointing out the specific individual and targeting him or her for a massive attack by the community, there ought to be a way to provide accurate information without the personal attack, to show compassion rather than a desire to tar and feather others.

Perhaps we could consider whether we're engaging in behavior to avoid our own personal drama and whether others out there are doing the same. I can't help but think of a certain Huffpost blogger who I've held up to ridicule over his outlandish ideas about the universe and how death doesn't exist because there are multiverses. He lost his sister, and in trying to make sense of that loss, he went astray. As fun as it is to poke holes, once you consider his very real pain, how can you not turn away and let it be? One thing is certain, we will all lose loved ones, and there's no way to know if we will cope adaptively or not.

It takes so little to just pause and reflect before acting. It's a wonder we don't do it more often. Of course, there's the difference between the immediate satisfaction of going off on someone versus the reality that considering another person's plight might invoke feelings of sadness and heart-hurt. We like cheap thrills--they're so much easier to live with than those heavier, deeper feelings of compassion that linger and cause us pain.

It's that willingness to feel compassion, to carry another's pain, to pause and reflect, though, that lead to true community--where everyone involved knows unconditional support and that those awful feelings, the despair we sometimes carry, can be expressed without the worry that we will be unmercifully attacked.

Sick Kitty

2011-12-14T09:07:00.001-06:00

It never ceases to amaze me at how fiercely and completely we can love our pets. Nor the depth of fear that chokes us when one of them is sick and we are faced with potential decisions of life and death. 26 years ago I lost my cat Lincoln to a bad urinary tract infection. Lincoln looked almost identical to Frankie, and I loved him terribly. I was devastated when I lost Lincoln my senior year in high school, enough to check out from school, writing death in the family as the reason. Eight years ago, we lost Shadow for similar reasons.

We caught it early with Frankie. He's at the vet, getting cathed and they'll figure out how bad it is, what they can do. And I will try not to hyperventilate over the next 24 hours.

I love all my cats, but there's a special place in my heart for Frankie. He sleeps on my chest; he reminds me of both Lincoln and Shadow, and after all the losses this year of three other beloved animals, I'm not ready, so he better be okay. It better be fixable.

Damnit.

Oh, and on a side note, taking a cat to the vet is actually more panic inducing in me than getting on a plane. Good to know.

You Looking at me?

2011-12-13T08:02:00.002-06:00

me..

Got my attitude for sure.

Mom's got five goldfish; they're named after us.

And three algae eaters..who don't have names. Hmmm.

Squeeze and Release

2011-12-12T08:36:00.001-06:00

The pressure that's squeezed me for months has loosened. It had gotten progressively stronger, more forceful, wringing me exhausted even before the morning started. It's loosened, but it's not gone, and I know that it won't ever fully leave. I will get periodic reprieves, opportunities to rest, and I must make the most of those moments so that I am girded and ready when the pressure tightens again.

I am not unique, not even extraordinary. I am a mother, a wife, a daughter, a sister, an aunt, a teacher, a friend, and so I am pressured. Each and every day, as I expand my heart and let more people into it, I am pressured. I am squeezed with worries and concerns and fears.

I am also, though, stretched, expanded, and just as often filled with a deep, kniving joy; who knew that joy could hurt? Who knew that caring about others could make one's heart expand past breaking, so that each moment of bliss was also filled with loss?

I am less pressured this morning, but it is only a reprieve, and it's only because I have put a semester to bed, tidied it up, input grades and called four months of a journey with over 150 lovely, unique and valued students over, done, destination arrived. There is joy in seeing how many made it to the end, learned, grew, got it. There is joy in seeing how many I got to know well, got to care deeply about, got to see master new skills. There is joy in looking ahead at the next semester's rosters and seeing so many of them choosing to continue that journey with me.

There is sadness, though, at seeing the names of those who did not complete the journey with me, who traveled only part of the way and left. There is sadness in seeing the names of those whom I was not able to help. There is disappointment when I see the names of those with whom I did not connect.

The pressure, though, is relieved. The semester is over. The grades are uploaded; the gradebooks will be dropped off today. This section of the journey is over, and I can breathe easier. Now, I get to look forward to the next part of the journey, to tweak and adjust and plan how I will plot the course (literally), how I will impart the wisdom that will let the goals and outcomes be met. I like this part, this anticipation of new journeys, that new faces will be mixed in with the precious, dear faces of students who have expanded and contracted my heart. I fall asleep each night with thoughts of what I will teach, what I will share, how I will get there, to May, and wonder how many will be able to stay on the road with me.

I know that I will feel the pressure again, the tight squeeze, and that just like each moment, each breath, each beat of my heart, that the pressure will ease before it squeezes again. The steady rhythm, the predictability, comfort me. I am never on this journey alone, and each year, more join me, and my heart expands past breaking point.

A Failure to See

2011-12-09T23:04:00.001-06:00

We set up divides, barriers, eager to seek the boundaries that create commonalities so that we know where we stand at all times with one another. We each have our own deal breakers, things which cross our boundaries and for which we simply cannot allow our companions to partake in, believe in.

Our boundaries constantly shift, though, depending on what particular thing holds the utmost importance to us at a given time. We often fail to see people in their totality, to value them for who they are, regardless of who they are to us.

In the online autism community, we face these divides constantly, and we push those boundaries, watching them snap back at us, till we find ourselves suddenly on the other side, looking in instead of looking out. It's an odd thing, especially given the unique qualities that we, as parents and individuals on the spectrum, bring to the table. Even the most neurotypical of parents and siblings tend to display certain characteristics; some of us more so than others.

We're quirky, eccentric, interesting individuals, all of us, with our own baggage, and we often find ourselves in the middle of miscommunications that leave us befuddled and upset. Too much drama, too many spoons used trying to sort it all out, too much period.

I don't think there's a fix to the many divides, the shifting boundaries, the rotating allegiances, other than to stop and focus on the big picture, which can be hard to do when we're hyperfocused on the details.

We're so ready to cast stones, to see the other as the enemy that we often fail to notice the things we share. Sometimes it's important to stop, to see, to acknowledge.

Julie Obradovic writes,

"Your children are in there. They see you. They feel you. And they need you, especially you, to see and feel them. Be responsible for the energy you bring to them. Make sure they know you feel more for them than just the pain and anxiety you feel deep in your heart. Make new memories. Good ones. Ones that have absolutely nothing to do with Autism. Treat them like a child as much as possible, not just a medical case. It's easy for them to get lost yet again in all of this. Don't let that happen.Whether your child ever recovers from Autism or not...and I pray with all my might for you that they do...they will only be this little once. They are children. Stop. Sit with them. Play with them. Enjoy them as they are, as hard as that may be for some of you. You must choose to make new memories.
There's so much more to our children than the Autism. And that's at least one thing I agree we need to celebrate."

Enjoy them as they are. Those are words of wisdom, and failing to see that, to honor people, to acknowledge them, well, that's just another way of cutting ourselves off from our fellow man.

Joseph Campbell wisely notes,

"People are afraid to move into the free fall of a totally new way of looking at others. So the new mythology to come must be a global mythology, and it's got to solve the problem of the in-group by showing that there's no out-group. We're all members of a society of the planet, not of one particular place, and the fact that the three main religions of the Western world-Judaism, Christianity, and Islam-can't live together in Beruit is a refutation of all three in terms of their value for the contemporary world. They're monstrous! We must begin to realize that each is saying in his own language what the other is trying to say in his. There must be brotherhood and cooperation. Because unless that comes, we're going to blow ourselves to smithereens.
Every single one of the old horizon-bound mythologies reserved love for the in-group, and aggression and denigration were reserved for the out-group. Now, something's got to break that. And when we see that picture of our planet taken from the moon, the question arises: What are we going to do with our aggression? How is it going to be absorbed into love and transmuted from gross matter to gold? I think teaching "I-thou" relationships, rather than the "I-it" relationships, which [theologian Martin] Buber spoke about, is the first step. The teaching of humanity rather than the teaching of in-group appreciations is what's important.”

Take the time. Make the effort. See the other, and in his or her eyes, see yourself reflected back, see our common humanity and reach out. Connect. Share.

Mom's Flowers

2011-12-08T09:34:00.001-06:00

Nothing is blooming here in my yard, but Mom always makes sure to have pansies at her house.

Blame Game

2011-12-07T21:15:00.001-06:00

More than a year ago, after yet another horrifying story about a parent killing her autistic child, I wrote a post on how scientific research shows that filicide is almost always accompanied by mental illness.

Parents kill, not a lot of them, but when they do, it makes national headlines. Friedman and Resnick note that "the US has the highest rates of child homicide (8.0/100,000 for infants, 2.5/100,000 for preschool-age children, and 1.5/100,000 for school-age children), [but] the problem of child homicide transcends national boundaries (6). These rates of child murder are probably underestimates, due to inaccurate coroner rulings and some bodies never being discovered (,,)." They continue, asserting that most maternal filicides involve some type of mental health issue.

In Colorado, the woman who confessed to smothering her six month old because she believed him to be autistic was found to be mentally ill and the prosecuting attorney chose not to pursue a trial. Instead, she will be evaluated and likely committed to a psychiatric institution. Both the prosecution and the defense will argue to the judge that this should be the course of action. Although she will not face prison time, it is unlikely this woman will be on the streets.

It's tempting when these horrifying stories about parents killing their children come out to play the blame game. Indeed, it's something we often can't resist. It's Age of Autism's fault because they present autism as so awful. It's Autism Speaks' fault because of that stupid sentence saying autism is more prevalent than three dreaded diseases. It's everybody who has ever complained about autism. It's everybody's fault but the woman who chose to kill her child. If only there wasn't negative things written about parenting a child with autism that woman wouldn't have done that. She was mentally ill. She chose, whether she was in her right mind or not, to take her child's life. That is not the fault of anyone on the internet, although it is comforting to think so.

What we should do as a society is to work harder to recognize and treat postpartum depression, to provide adequate assistance and education to new parents, to provide respite for parents dealing with disabled children, to make sure that families don't fall through the cracks.

As parents, we love our children, we take pride in their accomplishments, and we celebrate them in all their wonder. We also worry for them, fear for their future, and work to make the world a safer place for them. That means making the world a safer place for ALL children, making sure that no parents are without safety nets, that seeking treatment for mental health issues is not seen as personal failure but heroic and brave.

Childhood Obesity and Parental Responsibility: Not as Easy as Some Would Have It

2011-12-07T12:35:00.001-06:00

Huffington Post has a piece up on whether parents of obese children are in denial. Of course, the comments are typical for Huff; there are the usual close-minded asses who assume that all obesity is a result of fat parents "sharing the misery" (as one commentator wrote).

Like most things in life, childhood obesity exists for multiple reasons, and judging these parents to be unloving or abusive misses the complex factors that combine to create obesity in individuals.

I'm the first person to admit I'm obese. I'm not thrilled with that, but I'm absolutely not in denial about it. Unlike some people who judge overweight people to be people with poor self-control and lazy, I know that obesity has nothing to do with a person's value. I don't feel sorry for the person because if he or she just tried harder, the weight would disappear. There's no pity; there's no shame. I'm not going to feel embarrassed about my weight or that I should have to apologize for it. People can deal with it or not; it's not my problem how others feel about the fact that I carry more weight than is healthy.

But what about my responsibility as a parent to my children? Bobby's struggled with his weight since he was nine and placed on risperadol for six months. He went from fifty pounds to over one hundred pounds in that time, and it took us years to get that extra weight off of him. When he reached adulthood and had more control over what he ate and when, it no longer became something I could control--he's gained weight, but he seesaws back and forth within a fifteen pound range. I'm not about to make him feel guilty. We work to have healthy food in the house without depriving ourselves of treats.

I'm trying to teach my children that moderation and movement are key while also promoting the belief that a person's value lies not with his or her looks or weight but instead with who a person is, the character of the person and how he or she treats others.

It would be nice to reduce the obesity problem in children down to parental abuse, but that is not the case. Obesity arises from complex factors, and just because parents are obese doesn't mean they are lazy. Poverty and the reality that the cheapest foods are often the least healthy foods play a role in obesity. The convenience and relative cheapness of fast food also plays a role. Snack foods, candy bars, sodas: the availability of calorie-laden foods is a problem, as is our fast-paced society which places no value on recess or PE for kids in school, that enforces a couch-potato mentality after school, and that makes it difficult for disadvantaged children to partake in private sports teams.

The next time you see an overweight child, rather than be disgusted with the parent, consider the complex factors that may be at play. Don't pity them, don't feel sorry for them, don't judge them. Instead, consider that you might not have all the facts, don't know their situation, and move on, realizing that our society has created this problem and it won't be fixed with dirty looks, nasty comments and removing children from their parents' care.

When Dreams Haunt: Loss

2011-12-06T08:38:00.001-06:00

It's a wonder I haven't had these sorts of dreams sooner, when one thinks about it. I started volunteering with hospice in July, and I've had three patients that I volunteered with die in that time. I also call about a dozen different grieving families every week to check on them. I've been to more visitations and funerals in the last six months than I have in the last decade. I will, as a volunteer for hospice, deal with death regularly. And yet I know that I will still be insulated; the full-time staff of nurses, aides, chaplains, and social workers deal with it constantly. It is their livelihood to help people have a dignified and comfortable last few months (or even days).

Despite this increasing familiarity with loss, my dreams have been free of this. Despite the reality that my mother deals with Addison's and is at risk, despite Rick and Bobby's blood clotting disorder, somehow dreams of loss have not darkened many of my nights.

Last night, though, I was not so lucky, and the remnants of the keening sense of loss still wash over me. Objectively I know that it was just a dream, but emotionally, I still feel it, still relive in my mind the gut-wrenching pain of loss that had me on my knees in the dream, screaming out, reeling from the loss. In the dream, I wondered how people could lose someone and not be reduced to that all-out wailing, that incoherent, blubbering mess.

I know that hospice care, terminal illness, often affords families the chance to prepare for loss, to find the end of a horrible illness a blessing and a relief (although not all do). I also know that people often put on a stiff-upper lip, compartmentalize, and additionally may medicate themselves so as to avoid the messy embarrassment of losing emotional control. I know that I do not witness those most private moments of grief.

In my dream, I felt the totality of the loss, the reality of the absence of my loved one. I knew it viscerally and I was undone. I woke up from the dream with an ache in chest, a knot in my gut, and the fear of loss without the chance for goodbyes, for a last hug, kiss, eye contact.

There's nothing we can do about the reality that life is short, that bad things happen without warning, that we can lose everyone we love, lose it all in a moment.

When that happens, when the loss occurs, as it inevitably will, I don't know if I will be so undone as I was in my dream last night, if I will hide that overwhelming loss and pain from others, if I will wear a mask and continue about my daily life with no pause. I don't. None of us do. None of us knows how we will react, how it will impact us, whether our belief systems will offer us comfort and peace or the stark reminder of the permanence of loss.

None of us knows, but it pays, I believe, to make sure that our foundations are sturdy, that we do the soul work ahead of time, that we take the time to show our love to those we care about, that we make our time with our loved ones well-used time. It pays to not leave things unsaid or undone.

Being there for families who are both in the midst of going through loss and for families who have suffered loss is a blessing. Being allowed to share some of that journey, to offer care, concern, acceptance brings a measure of grace not just to those families hopefully, but to me as well. We are all on the same journey; we're just taking different routes to get there. Remembering that truth is important. Learning it, truly getting that, makes it impossible not to feel compassion for others, no matter what road they take.

My dream resonates with me; its message is not lost on me. Today, my loved ones are still with me, still here, and for as long as they are, I will try to not waste a moment. I will lose. We all will. But if we build a network of support and open our lives to others, we do not need to face the loss alone.

Happy Kids

2011-12-05T21:14:00.001-06:00

Taking stock, reflecting on all the things that are going well, that's important, especially when there are things that are going bumpy. Life is rarely a smooth ride, and I suspect that if everything were perfect, we'd be almost paranoid, waiting for the sky to fall.

We've got issues, no doubt about it, but a great deal of the time, we're pretty darn happy here, and as long as the smiles and laughter outweigh the tears, we're gonna call it a win here.

How can you look at these kids and not light up?

When the Weekend Drags...

2011-12-04T13:18:00.001-06:00

It's by no means been a bad weekend, but it nonetheless feels like we're stuck in a time dilation field, with no exit in sight. That seems grossly unfair to the kids and Rick, but gods, I can't wait for tomorrow. It might have something to do with Rosie being home with a bum ankle since the 23rd. It might have something to do with the month-long sinus infection I've been putting up with.

It could also be that there are only three more finals to give in order to put this semester to rest, and I'm ready for the grading to be done, but I swear by all that is red-inked and error-laden that I am so ready to be done grading that I wish finals weren't obligatory. I'd skip them with delight.

All I really want to do is curl up in bed with a Stephanie Plum adventure and veg, in sweet silence with a cat at my side and another on my chest. Alternately, running down the road helter skelter also appeals. I am skin jumpy again, and that seems to set off the time dilation field, so that hours pass by so slowly it seems as if one is riding on a slow-moving molasses wave.

The kids don't seem to notice or care, though. Rosie's walking normally again despite the lingering bruise and slight swelling. She and Lily are wrapped up tightly in each other's company, playing intricate games they create together. Bobby disappears into the field, so that I wonder if he constantly lives there, in a time dilation field of his own. He seems happy, though, so who am I to complain? If he's ever suffered from skin-jumpiness, I've never seen it, nor has he ever indicated that he ever feels stretched past capacity and in need of movement to shake the little prickly tingling sensations that crawl on the back of one's neck. There are times, especially days like this, that I wonder if any of my children or Rick have ever felt like they could jump out of their skins or needed to.

I am certain, though, that Little Dude, our kitten, gets it, understands that feeling, as he jumps onto the top of the fridge, and onto the ledge that runs the width of the house and divides the living room from the kitchen and runs across the tops of bookcases as if the devil were chasing him. I can't help but watch him enviously. I'd like to do that...of course, then I'd no doubt be back in the walking boot and really dealing with a serious case of skin-jumpy.

Give a Cat a New Rug...

2011-12-03T11:54:00.001-06:00

And she'll immediately pounce on it.

She'll give a whirl.

She'll pause for a good scratch...

And then the next cat will come by...

And look underneath...

Stop to examine the pattern.

And lie down for a good naw on the edges.

All while the other cat looks on disapprovingly.

Stubborn Can Be Stupid

2011-12-02T06:55:00.001-06:00

In this case, it's definitely my own stubborn, mule-headedness. I've been sick now for four weeks. It's obviously a sinus infection based on the pain in my cheeks and forehead, the copious amounts of mucus, lack of a sore throat or cough, and this week has been particularly bad, with a sinus infection induced headache/migraine (also have all the other things like nausea) that will not go away despite maximum meds. I've got to go to the doctor, but I've been busy or had Rosie to tend to.

Well, Rosie's limping independently now and will spend this morning with her grandma while I give a final exam. There's no excuse for me not to drive directly to the walk-in clinic as soon as the final is over, except my own stubborn-headedness.

I plan to go; I just don't want to. Sigh.

Monkeys.....

2011-11-30T16:43:00.001-06:00

Boiling, Swirling Frustrations

2011-11-28T18:33:00.001-06:00

There's nothing like being in the very last week of the semester (minus finals), feeling the crush of papers needing to be graded, gradebooks updated, assessments submitted, final exams printed off, all while being sick, tired, and bowed down under the demands of a child who uses you as crutches, another child who whines about her homework at eight o'clock at night and who has been working at said homework for several hours.

Boiling, swirling frustrations. Yup. I have them.

I am sure, though, that many of my students feel the same kind of pressure. Final papers and projects to be completed, final exams to be studied for, and a thousand other things weighing them down.

I think we forget these things, that teachers and students often have very full, very stressful lives outside the classrooms where we meet each other. We fail to see the other as a whole person with stresses and problems. I've been fortunate to know many of my students pretty well, to be invited into their personal lives, and many students have had the chance to know me outside the bounds of the classroom. I believe it adds a layer of intimacy and makes the classes better, the learning environment more open.

Not all students choose to fit into that atmosphere, though. Some students I barely get to know. Not all students make it through my courses or like my teaching style. Sometimes their personal lives and their school lives collide in ways that mean they don't successfully complete a course or choose to drop it or drop out of school.

Sometimes, situations, students, and I just don't mesh, and I'm not able to help them. That sucks. It really sucks when it gets to the last week and I realize how many weren't able to be helped, won't succeed this time around.

Yup. Boiling, swirling frustrations.

I'm bored, got no one to play with and nothing to do

2011-11-27T14:33:00.001-06:00

"Grrrrrrr. Boring. And I forgot what page I'm on."

"It's a boring book. All it's got is words and words and words."

"Chapter books are not very fun."

"Ohhhh, I got nothing and nothing and nothing to do."

--some of Rosie's kvetching today

Day 6 of Rosie's sprained ankle. Maybe letting her set up camp on the couch was not the best idea for maintaining my sanity. She's still reliant on us to help her get to the bathroom and back, so keeping her out in the living room is easiest on us, even if it's tiring, as well (and loud). Rick has slept in the same room with her since this happened so that he can get her to the bathroom, so he's definitely on my happy list.

It's been a long six days for many reasons, not just Rosie's forced bedrest. Mom was in the hospital from Thursday to Saturday (but is home and doing fine). Rick and I are sick. Lil's complaining of an ear ache. Plus, she's whiny. Bobby's in a "let's see how many dishes he can break or melt to the stove" mood.

We have four more days of the ten days Rosie's to stay off her left foot, so this week is going to be logistically interesting for Rick and me. So far, keeping her entertained hasn't been too bad.

She's reading Junie B. Jones and started editing the first book.

Hey, wait a minute! Sentences can't start with and!

Errors must be edited!

Didn't the writer know better?

I figure, nothing else, we've got another two dozen of these chapter books. She can sit and fix them. Maybe I'll pass some of my students' papers her way and see what she can do with them. :)

Boots, Boo-Boos and Bye-Byes

2011-11-23T14:55:00.001-06:00

Bye-bye, boot.

Feet and ankles are not safe in this house. I'm constantly hurting mine. For the last three weeks I've been answering, with a wry grin, the question of what I did to get put in the boot. I've had to fess up that I saw an elderly woman fall at the Rehab, where the hospice I volunteer for is located, and that I ran to help her and her husband, that I ran into the building to get help, then ran back to the woman and her husband. That's it. I ran. No, I didn't twist my ankle. No, I didn't trip. Nope, I didn't fall. I didn't even know there was a problem. See, it's a bum ankle. It always hurts. It took looking down and seeing the swelling to realize I had a new problem.

I'll see the orthopedist Wednesday and find out what's going on with my bones (two surgeries on the tibia and fibula to place a plate, screws, and a pin and to later remove them); apparently there are post surgery changes to the bones that are atypical and soft tissue damage. I'll find out if surgery is recommended or not. I've behaved and worn the boot for three weeks but I put my foot down yesterday that I wasn't putting the bastard back on. Period.

See, it's not bad enough that I hurt that ankle worse than usual--I had to go and dump an older CPU (think the heavy sum-bitches) across my feet last Thursday. So now the ankle hurts, but so do both feet. I've toyed with getting more x-rays...but let's be real. I can't wear two boots. Nope. And there's nothing really to be done but to wait for the feet to heal. I've been keeping off them as much as possible and hoping for the best.

Here's the thing. I've got this internal quota for how many times I can tolerate seeing a doctor and I'm at capacity. I'll wait it out, especially since I'm on the pain meds I can be on; I've got muscle relaxers. Really, what are they gonna do for me that I haven't already done.

So yesterday when I resolved to take the damn boot off my foot and be done with it, it was a blessing in disguise, as Rosie fell at her my mom's and sprained her ankle and is now on crutches...no way to help the child get around with the boot on my foot.

Rick and I spent the evening in the ER with Rosie while she got X-rays, her ankle wrapped, and her first pair of crutches. You know, you never forget your first pair of crutches. It's a special moment in a klutzy person's life. I remember mine...I had a motorcycle wreck in 8th grade...I've been on crutches more times than I can remember. Got my own personal wooden pair--old school. Hey, and next time, my right ankle screws up, I've got my own walking boot.

Rosie, after crying in the car that life was so hard and finding that a chocolate milkshake fixes a lot, decided she was going to be okay. She's getting round better with the crutches than I can. It's a good thing, too, if I've passed the klutzy gene to her.

Doesn't hurt that her big sister literally has her back just in case she wobbles.

And now for something different.

2011-11-21T17:20:00.001-06:00

Nuffy (Mom's dog) and Rosie.

Chillin

2011-11-20T11:19:00.001-06:00

Piles and Piles to go Before I Sleep

2011-11-18T22:24:00.001-06:00

Such is the life of an English teacher--not miles and miles to go before I sleep, but piles and piles to go. Each day I tackle the magically reappearing stacks, find stray essays tucked into bags, find the bags themselves multiplying.

I have bins and bins of papers from previous years that also seem to magically multiply. Extra copies of worksheets and readings are crammed into bookcases and on the floor in piles. Old syllabi linger, showing the evolution of courses taught year after year, and psychology tests are stuffed in desk drawers as I tinker with the tests, working to make them better each time, but ready to be pulled out and put back to use at a moment's notice.

I've been immersed this semester in my classes, my students, their work, and trying to find just the right balance of assignments to help them master critical skills while still leaving me with time to sleep and breathe. When I haven't been invested in the classes, I've been fundraising with students for free mammograms for women in need, for the American Cancer Society, for the local food bank, for Autism Speaks. I've spent hours each week visiting hospice patients or making bereavement calls. I've spent the rest of my time with my kids, trying to help them navigate an increasingly complex world that makes ever greater demands on them that often highlight their weak areas rather than their areas of strength. And somehow, I've even found time to read the first four Stephanie Plum novels by Janet Evanovich, too. Even paid attention to my husband, had lunch with friends. It's been a productive (and painful, klutzy) semester.

All of this has meant that my time for reading blogs and news stories relating to autism have been severely limited, as has been my writing time. I think this is a good thing, all in all, given the rancor and divides that exist within the online autism community. As Bobby says, too much drama.

Too much drama.

Our real lives are surely full of enough drama. I decided awhile back that the Age of Autism and vitriolic anti-vaccine contingent was interested in distracting themselves from their real-life drama with online drama. And maybe I was, too. Dealing with online drama lets you distance yourself from the real world drama taking place.

Some people play solitaire or mahjong or Sims. Some play even more aggressive games, like shooters. Some people read trashy novels. Some watch reality tv. We all do what we can to distract ourselves, transport ourselves outside of our lives, whether they be good lives, or difficult lives. We all need a break, a chance to see something outside our lives.

It's easy to vent anger into the internet and take it out on strangers. Easy to sit in front of a computer screen and feel smug self-righteousness as our fingers pound the keyboard. So easy and it has the cheap thrill of a whirlwind shopping trip at a dollar store--you get a lot of crap for your money (time), but it's still crap.

Too much drama.

I don't miss it. And I hope my children choose to fill their lives with meaningful activities in the real world that give them what they need for self-validation. Dipping their toes in, reaching out to connect in positive ways to create a mutually supportive online community, that's all good. The drama, not so much. I will teach them to avoid unnecessary drama and cheap thrills.

Although...I wonder, would virtual drama distract me from all those piles that keep growing?

I'd rather...

2011-11-17T06:49:00.001-06:00

I've got a serious case of the I'd rathers. I suspect most of my students feel the same way about now in the semester. This morning, as I sit in my recliner in the just-now emptied house, I'd really rather climb back into bed and go back to sleep. I'd rather snuggle in the covers and wish away the last remnants of this cold away. I'd rather not put on the walking boot, too, so that might have something to do with it.

I've got a lot of I'd rather nots. I know my students do, too. We're tired. We've worked hard for thirteen weeks, and we're ready for the end of the semester. Maybe not the end of our time together, though. I was blessed with great classes this semester, students whom I've come to know well and care for, and we have a great deal of fun being in each other's company. No way I want that to end, but I'd rather the endless stack of papers end for a time.

We've got two regular weeks left (and next week is just two days). We're mentally done, calling it quits, and yet we're not at the finish line, and we've work to do. So even though I'd rather cancel the day and go back to bed, I won't, because in the end, I'd rather be with them to see what silliness we can bring to the day, what new thing we can learn together, and because...I've got another stack of papers to take up (although I'd rather skip that part).

Cat Touch This

2011-11-16T06:29:00.001-06:00

Companionable Silence

2011-11-14T15:00:00.001-06:00

Silence is often something I hunger for; it's rarely quiet at our house, and with the tinnitus I deal with, there's an added element of noise I'm always putting up with. Sometimes, the auditory stimulation is more than I can deal with and an intense migraine follows.

So my car is a quiet place, no noise other than the air conditioner at full blast and the sound of the engine. Sometimes drives with Bobby, though, are loud and busy because there are issues we need to deal with or things we need to try to straighten out. Bobby reads books while he waits to be picked up, and sometimes we end up discussing the books and trying to realign what he's taken in with what the book really said. Those conversations on the drive home can be frustrating for both of us.

Other days, we ride along in companionable silence, at ease with each other and just happy to be together, no words beyond the initial greeting necessary. I crave these moments and treasure them when they happen. They are centering experiences where it's just enough to be together and know acceptance.

Our lives are often messy, loud, and chaotic in the middle of trying to create structured, ordered, functional day-to-day routines for our children so that they will have guideposts to anchor them. Sometimes we forget we need the guideposts, too.

The other day, in the midst of cleaning house, I stopped and laid down across my bed and looked at the ceiling. I lay there, looking up at the dark purple, the bed curtains, the flowers hanging, and I stared for awhile before I hollered for the boy to come in the bedroom with my camera. I made him lie beside me and stare up. "Why?" he wanted to know. I told him to just be for a moment and look at that space, that dark purple empty silent space. It was nice. Clean. Quiet. Peaceful.

My house is cluttered, filled to capacity and then some with books, bookcases, and our various collections. It is BUSY. But I realized this weekend that there's peace, there's space, and there's quiet here, too, if you know where to look.

Later I ended up on the bedroom floor looking up and saw that there's really this massive space that's empty. The boy walked in on his way to the bathroom and asked me what I was doing now, and I told him I'd found more space. He shook his head and muttered and went on, but seriously, I've got two thousand square feet of space I'd been missing. I think I'll spend more time lying on the floor looking up. Cats like to come over and see what you're doing and lie with you. They get it. They stay with you in companionable silence, and the peace that comes from knowing that silence, that space, is priceless. Maybe I'll even talk the boy and the girlies in spending some time staring at the ceiling. Quietly, of course.

No one does disdain like a cat

2011-11-11T07:11:00.001-06:00

Lucy (the daughter)

Mabel (the mom)

Like mother, like daughter.

A Pokemon Conversation

2011-11-09T20:02:00.000-06:00

Lil and Bob are behind me in the kitchen having an animated conversation about their Pokemon Nintendo DS games. They're talking rapidly, wrapped in each other's words, following the other's speech with no problem. It's a wonder to hear; they understand each other completely and are completely absorbed in their conversation. And they can go on for hours. And hours and hours. And hours. Seriously.

One of the things I'm grateful for is that Bobby has sisters who are ready to enter his world, share his interests and spare me the need to remember Pokemon names and battle strengths and weaknesses and attack points. Now if I could just make them have the conversations where I didn't have to hear them?

Who would have thought Pokemon would go on for more than a decade?

Things I Notice...

2011-11-08T17:56:00.003-06:00

Snapping photos of the girls playing this afternoon at my feet, it didn't escape my notice that the string of items behind Rosie in this shot are permanent displays, not because they're playing. I may have more toys than them. And the weird juxtaposition of stuffed bunny, Madonna, rooster, brain, dinos, and star trek, along with the eclectic book choices around them...that's me, in a nutshell. Weird and geeky.

Setting it all up.

What's Star Trek without reptiles?

Spongebob invades Star Trek.

Getting Star Wars out to add into the playing mix.

Are Your Ducks in a Row?

2011-11-07T09:56:00.001-06:00

It occurs to me if I were lining them up,

I'd do it so they were battling each other.

Unicorns and cupcake ducks against

the cop and military ducks.

Viking ducks waiting to swoop in.

So are your ducks in a row?

Mine, not so much...

Bum ankle.

Bad cold.

Flushing from the steroids.

All equals

varying levels of miserable at the moment.

If only it were in pink.

That would be awesome.

Strides Forward and Steps Backward: It's All Uncharted Waters

2011-11-05T11:33:00.000-05:00

I've been sharing the good, the difficult, the worrisome about Bobby's journey to manhood for nearly three years now. He's made huge strides forward in independence, in moving out into the world by volunteering 28 hours a week in the kitchen at Meals on Wheels and a couple hours on Fridays at the local SPCA. He's happy with what he's doing and by all accounts helpful.

He cooks many of our meals, at home as well, and other than occasional missteps, he does very well. He never walks away from the stove and stays focused on what he's doing. Sure, he occasionally tries to spice it up so much that my tongue falls out, but overall, he is highly competent in the kitchen.

So it flabbergasts me that a week ago, while he was home for a couple hours alone, he chose to microwave his lunch, input numbers into the microwave that were far greater than needed, walked away from it, and came dangerously close to starting a fire--the dish melted in the microwave, the house filled with smoke, and even now, more than a week later, the smell of that burned/melted/utterly destroyed meal lingers in my house. We've got to replace the microwave, and I find myself questioning leaving him unattended at home at all if he can so easily get lost that he doesn't notice the problem until it's nearly too late.

It feels both like we've taken a huge step backwards and that we've been incredibly lucky nothing like this has happened before.

And yet, this morning, he donned a chef's jacket Kathleen had sent him and decided to make omelets, a dish he and his grandma had discussed. It was a wonderful meal (although more scrambled than omelet) and he was incredibly proud of himself.

The reality is that we are, each and every day, in uncharted waters. Somedays, he is incredibly focused and does very well. Other days, the fog he must navigate through is almost visible to us. Throughout all of it, I believe he tries to do the best he can and that acceptance of the variability of his ability to function is key to making the best possible life for him and us. We must be reasonable in our expectations while working to help him exceed those expectations in a way that keeps his psyche intact and whole.

I think that we stumble through each day together, all of us trying our best to do right by each other, and that when we slip, we work hard to make it right, but our life is far from perfect and some days are hard. Not just for me or Rick, or my parents, in our interactions with Bobby and trying to assess whether it's a good day or not for him, or whether we're asking too much, but also for Bobby, who tries to make sense of the world around him and the kaleidoscope of people and voices and demands for his attention.

It cannot be easy for him, and I cannot allow my hopes, wishes, or fears to in any way make it harder for him. So we're pulling back on time spent alone and insisting he stay with his grandparents those afternoons I can't be home, which he seems to be more than okay with. We're requiring him to pay for a new microwave, as well, but we're not yelling, we're not punishing. We're hopefully not overreacting. We're just navigating those uncharted waters together the best we can and hoping we'll reach the other side intact (and not smelling of smoke).

Honoring Loss

2011-11-04T06:50:00.002-05:00

Last night was the annual Candlelight Memorial service the hospice I volunteer for provides for the families we assist. There's nothing like coming together for the common cause of remembering those we've lost to foster a sense of the sacred and profound, to realize that loss is a common feature we all share, and that we all too often keep locked up and hidden away.

Rick and the kids went with me to the service, where pictures of those who have died were shown, whose names were read, and for whom candles were lit in remembrance. Hospice's whole purpose is to serve those individuals who are dying and their families, so it's not surprising how many candles were lit. Sad, heartbreaking but not surprising.

We hide death and the very real effects that loss has on us; even as television glorifies killing, it denies any lasting effect on the characters who both kill the enemy and lose their comrades to battle. It causes a schism, a disconnect, and it's no wonder we wander around in our society with no clear way through the dark days of loss. We expect things to go on as if nothing had changed. But it does not and should not.

Remembering those we've loved and who've gone on before us is important. Taking comfort in remembrance and honoring of our loved ones provides meaning and connection. On days where I need grace, I wear my maternal grandmother's perfume. Each year, I buy a new bottle of it, and the truth is I wear it most days, as I'm always in need of some extra grace. My other grandmother's cheap little cat figurines are in a curio cabinet in my bathroom, so that I am reminded of her several times each day in a positive way. Monday, I wore a twin set that my paternal grandmother would have worn and a sweater my maternal grandmother would have worn, and I felt wrapped in them all day. Not a bad way to go through a day.

Loss is inevitable and terrifying. Its inevitability should help remind us to make the most of each day, the most of our time with the people we care about. And when we are in the midst of that loss, hopefully we will remember that others are out there going through similar situations and we will reach out and connect with each other.

I Don't Wanna

2011-11-03T06:33:00.000-05:00

I don't wanna...

wear this damn boot...

I don't wanna...

feel old and hobbled.

I don't wanna...

clomp around, slowed down...

I don't wanna...

get dressed and go to work...

not because I don't want to teach,

but because of the walk in and through the building.

I don't wanna...

do a whole heap of things.

But I'm gonna

Do it all anyway.

I'm gonna do it...

all hopped up on chocolate.

If you have to do something

You don't wanna,

You should have chocolate.

Bad Kitty

2011-11-02T08:02:00.001-05:00

I kept thinking the kids weren't shutting the chip bags.

I'd come home and find them open.

Nope. Lil Dude is the troublemaker.

Regrouping for a moment.

Once he pulled the chips out of the bag, I moved

the bag so you could see how greedy he is.

He grabbed one and took off to the living room.

Yummmmmm.

He left no crumbs, either.

So, if you see an open bag of chips on my counter,

you might want to think about eating any.

Tuesday Dreams

2011-11-01T06:29:00.001-05:00

I dream...

that everyone's day is filled with beauty

that everyone knows love today

that everyone finds something to be joyful for

that those who are bitter will know peace.

Using Spongebob As Incentive and More

2011-10-31T09:37:00.002-05:00

Lily had to present a story she'd written in front of the class, so I promised to buy the last spongebob tee in town, super spongebob with a cape from Spencers. She managed to whisper it to the teacher, which was close enough, so off I went Friday to get the tee.

They were on sale! Woot! So to mess with her I got an extra large and a small. I put the extra large on and waited for her to get home.

Yeah, it's me. Not.

After the initial "hey no fair" reaction, we showed

her she had her own.

Yay!

And then it came out she'd teased her sister on the bus.
So Rosie got Lily's tee instead.

Lily had to wait two days to get the one I was wearing.

Yesterday they wore Spongebob with capes all day.

Today, with Lily's tee freshly laundered and sans cape, she went off to school with her brand new tee.

Autistics Speaking Day

2011-10-31T09:27:00.000-05:00

Last year, a well-intentioned but misguided group tried to get people to abstain from all online social networking so they could get a feel for what it means to be autistic. Corina Becker and Kathryn Bjornstad started Autistic Speaking Day to counter this. Last year's contributors can be found in a listing on their blog for the event.

Last year, I wrote in support of autistics speaking. I suggested:

Instead I say, go to the blogs by individuals on the spectrum and say hi. Read some entries. Learn what their lives are like. Our children will one day be autistic adults. We want to make sure our children have a good support system, well, let's be a good support system to the autistic adults who are in our midst now.

Sometimes it's hard to be a good support system when miscommunications occur, and it is unfortunate when friendships unravel over disagreements, but speaking out as an ally and knowing when to hush as an ally and allow those who we support to advocate and speak for themselves are important.

So, tomorrow, on Autistic Speaking Day, I'm still suggesting you take time to read their words. You don't have to agree with them at the individual level, you don't have to like them personally, but you should honor their right to speak and that they choose to, that they fight for the right to express themselves, and that they accomplish that.

Someday our kids may get to do the same thing, and we want a receptive, accepting audience for them to feel safe to express themselves, that they will not be personally attacked for that. They must learn that they may encounter criticism, but where that criticism is offered with evidence, they are not being dismissed, but instead treated as equals in the discourse and worthy of debate.

I hope that tomorrow will be a productive and instructive day for those who participate as writers and readers and that dialogues will occur on the blogs and community built.

Partying for Good Causes!

2011-10-30T10:26:00.001-05:00

The kids had been waiting since August for last night's event at Mr. Gatti's. They were so excited they wanted to get dressed for it when they woke up and it didn't start till 10:00 pm! Well, Bob wasn't in a rush, but he was a pretty good sport and let me paint his nails, spray his hair, and put makeup on him.

Day 29 of pink for me. Just saying.

I switched to all black for the party.

Of course, Lil was SpongeBob.

What happens when Goths age and have kids?

Getting rid of my makeup job.

Telling me he looked better with this look.

Rosie's a monarch butterfly minus her wings.

We had a fantastic time, raised $260 for our local food bank and $260 for Autism Speaks. Not bad for an evening of fun.

Thank you to my wonderful friends and students who came out and made me laugh until I ached and my throat hurt. And thanks, once again, to James and Stormy, who made the night possible by putting up the $500 deposit to make the event happen.

My life grows increasingly richer with wonderful people who make me incredibly grateful for their presence in my life. Makes even rough days easier to smile through, you know?

Bored on a Saturday Morning? Why Not Troll? Anti-Vaccine Community Offers A Bad Guy To Fight

2011-10-29T10:45:00.001-05:00

It's always a little surreal to see a new comment in the email on an old article. The older the article is, the stranger it is, especially when the comment itself is bizarre.

Back in May, I wrote the last major piece on anti-vaccine rhetoric; nothing much more to say, really, as the rhetoric hasn't changed. The article itself was rather innocuous, but the comments got heated. This morning, a person who has commented on that same piece, I believe (same IP), but under another screen name, wrote this in response to a comment left by Ken Reibel back in June:

Well now, Mr. Reibel, the answer to that is really quite simple. Because you have proven yourself to not be trustworthy in these matters in the past many times over is precisely why you were asked to leave. It's not rocket science. Just as much of what we debate about pertaining to autism is not. I am surprised anyone really had to spell that out for you. You are unaware of your own reputation within the community? I have my doubts. I think playing the victim simply suits you and furthers your cause.

She then continued in general:

Frankly, I have a really hard time imagining "grown-ups" with nothing better to do than continue to whine and "debate" over this issue five months later. You do yourselves no favors here.

It seems more than a bit odd that the thread has been dormant since the beginning of June and she accuses us of whining. I pointed out that the thread had been quiet until she came back and started it. Rather than responding again under the same screen name she switched from "An ASD mom and first time AO attendee" to "Wah, wah, wah....." and wrote:

The title alone says it all. What was Ms. Wombles and her posse thinking? It's not completely one-sided and intended to bait others? Seriously? Please. And you expect to be treated with dignity and fair play in return. Because that is what you do? ICK! Make me sick. Take a long hard look at your own whining selves, please. Any semblance of fairness is lost in the title, so why bother with any of you. Good grief.....

Considering that the title of the piece is "The Reinforcements That Community Brings: Anti-Vaccine Narratives Provide More Drama," it makes you wonder what exactly the person means. The article itself is fairly sedate and points out that the anti-vaccine community provides feedback and support in a way that the evidence-based community cannot do. It provides a continuous narrative that makes sense of the insensible and is therefore going to be more appealing. Nowhere in the piece is there whining. I stand by my piece from five months ago, enough to repost it below and let readers form their own conclusions about whether the evidence-based section in the autism community is "whining" and "one-sided."

The Reinforcements That Community Brings:

Anti-Vaccine Narratives Provide More Drama

from May 31, 2011

Most of us seek out like-minded individuals who will reinforce our worldview. As I remind my students, we hold no beliefs we think are incorrect. After all, if we thought we were wrong, we wouldn't believe it. There's a reason that it can be hard for us to agree to disagree or live and let live, too. If I am certain I am right, and you disagree with me, then you must be wrong.

You can see the problems here, right? I'm not willingly going to go to a place where everyone believes the opposite of me. Neither are you. We wouldn't feel comfortable and we'd feel judged. Now, if we get a buzz out of entering the fray, swaggering into the others' territory to clash, if we cast ourselves as warriors, we'll waltz in day after day, but it isn't like going in as a wolf in sheep's clothing; nope, it's about going into the situation in full-wolf mode, no trying to fit in or create community.

So we've got a fundamental problem here; if the differences in belief systems are too great, there's no way to ignore those differences, and building community becomes difficult if not impossible because there is no sense that we're part of the same in-group. Indeed, the differences are great enough that we cast the other automatically as the out-group, and often, as the enemy. All the better to create a dynamic that provides ready drama and instant hero-status for the in-group members.

This is abundantly clear in the vaccine wars within the autism community. Friday Ken Reibel and Jamie Bernstein were kicked out of AutismOne (lots of coverage on this; links available atLiz's). All that was necessary for the expulsion was Ken being recognized; he's the enemy, and no enemy is allowed inside the sacred walls. And this event allows both sides to reinforce the in-group cohesion and solidarity; both sides push against each other to define their own boundaries.

I'd like to say that the science-based side is the more reasonable side, and I believe it is (it's my in-group and self-justifying along with confirmation biases means I'm going to see it that way), but I don't think we should be at all surprised they expelled Ken. They did it in 2008, too, after all. I think this played out exactly as everyone expected it would and provided the opportunity for each side to reinforce its own narrative and draw its own members closer. It's what people do.

The real question here is how do we combat effectively the growth of paranoia that the Canary Party (Age of Autism and like-minded individuals' latest venture) promises?

How do we effectively rebut people like Alison MacNeil, whose educational background ought to have been sufficient for her not to fall for the fallacious appeals to popularity and belief so that she can matter-of-factly write, "I went to the Green the Vaccines Rally. In the cab back to the airport after the Rally I called my husband. I said 'Honey this really happened. I just stood with 8,000 parents with the same story. We’re not crazy.'”

I don't think we can; she's found a more compelling, more dramatic narrative than the one that evidence-based individuals can offer her. She perceives any criticism as that of the enemy and is consequently inoculated against it. She has no reason to reevaluate her premises. She's got a ready-made community of folks who are the underdogs, fighting the man, ready to accept her and build her up. All we've got are scientific studies and often-pitying head-shakes for her as she tells her tale. Not hardly compelling enough. We shouldn't be surprised when she chooses people who will validate her beliefs.

Of course, those of us who've been in the vaccine-injury trenches already knew we weren't going to reach those who are already in the bosom of that enclave. To them, regardless of how genuine our offers of support are, or how similar our experiences as parents may be, we are the enemy. So we're not going to reach them and trying is a waste of our time.

What most of us are trying to do, then, are the twin goals of holding up ridiculous beliefs to the ridicule they deserve (for a completely different subject, Harold Camping anyone?) while providing accurate scientifically-backed evidence, even when it means acknowledging what we don't know.

After all, it's important to point out that there's more than a bit of "uh-uh, no she didn't" factor to MacNeil when she writes that "The other side has reverted to discrediting the speaker," only to follow up in the next paragraph with this attempted discrediting: "And it’s not like I embezzled millions of dollars from the CDC or was a heroin addict." That's not really support for her claims, is it? Besides, although MacNeil continued that science-based people were trying to claim Wakefield is a "nut" and Jenny McCarthy is a "slut," I don't know of any evidence-based individuals who have alleged that Wakefield is a nut. Dishonest. Unethical. Fraudulent. Greedy. But not a nut. And we really shouldn't care if McCarthy is a slut (not a phrase I've seen used against her unsubstantiated claims, by the way). If her claims are backed by evidence, whether she gets around or not is irrelevant. I think the argument has been that she's a Playboy bunny who doesn't know what she's talking about (and since she thinks antifreeze is in vaccines, it's fair to say she doesn't), but that's not the same as claiming she's a slut and should be ignored.

But again, all this goes to make a more compelling narrative. If you believe that the icons in your group are being attacked by the enemy, it's much more interesting to focus on one's strawman versions of those justified rebuttals of Wakefield and McCarthy while pointing out that on the enemy side, one researcher has been indicted for the theft of 2 million dollars and that one science-based writer is an admitted recovered drug addict. The first is relevant and it's fair to ask what role he played in the studies themselves; the second is an actual attempt at an unjustified discrediting.

How do you reach parents to show support and get there before those with more compelling, dramatic explanations convince parents that there are answers for why their kids have autism and that they can be healed if you just try the right mining chelator or other quack treatment? How do we create a vibrant, supportive community that lets parents feel comfortable in the absence of certainty while having the courage to withstand the temptation of promises of instant cures? How do we make our narrative more compelling than the vaccine-injury's?

I'm not sure that we can, really. If we're not willing to make stuff up, if we're not willing to engage in hyperbole and flights of paranoia, if we're insistent on being as scrupulously honest about the limitations of what we do know, what we can know, and most importantly, what we can do about the limits of our knowledge, then we are at a disadvantage.

Others have compared the anti-vaccine or vaccine-injury movement to religion. And it is; their beliefs are held with the fervor and conviction of true believers so invested in the ideology that they will sell their worldly possessions and hand out pamphlets in New York City, looking mystified and forlorn when the appointed time for rapture passes.

....

It's been five months. Has the Canary Party done anything? Well, their facebook page has 4,020 likes, so it's grown in facebook following. Their website now has a store attached to it. And it looks like they'll be attending (and have been) various autism-related conventions. The Canary Party continues to offer what I said it did five months ago: a narrative coupled with a way to feel active in getting that narrative out.

Contrast that to those who don't think vaccines are implicated in autism, and you'll see that we don't offer people coming to grips with the reality of autism a clean, neat answer. We don't offer them assurances that their child can be healed or that there's anyone to blame. What we have are maybes and don't-knows and those will never successfully compete with guaranteed answers and the promise of easy fixes.

The reality of parenting a child with autism is that it is an often terrifying job; we don't know how to best help our children navigate the world and we are often second guessing ourselves. We are inundated with so many treatments, pills, books, etc., promising a fix to particular problems, and it's a minefield to navigate. The anti-vaccine segment of the community offers a solidarity and a united front against "the man." It's a lure that's hard to resist.

Caturday

2011-10-29T09:34:00.001-05:00

Pinkkkkkkkkkkkk: Tiaras, Monkeys, and Pizza!

2011-10-28T07:24:00.001-05:00

Day 28 into my journey into pinkkkkkkkk. It needs that many Ks. It does. I don't know how Lil does endless SpongeBob; week ten of nothing but SpongeBob (except an occasional Star Trek tee on the weekend). That's a level of dedication I'm not going to achieve. It's not that I don't admire it; I do, but I'm beginning to long for my regular routine of tops! Ah, issues.

Yesterday culminated our breast cancer fundraising efforts at the college. We had a Pink-it-Out Contest at the college, where students had to be pinker than me to win free sock monkeys. We gave out four monkeys! Ah, and I didn't get one. Guess it's good I already have two (even if the girls took them). The Abilene campus focused on the Hope Fund and helped with the main campus's efforts to raise money for the American Cancer Society. We had speakers from both organizations on Tuesday and fed everyone pizza while they listened to what these organizations are trying to accomplish. Pretty cool.

I decided, Wednesday night, in order to be as pink as possible for the contest that I needed to touch my hair up again (those semi-permanent dyes fade quickly) and that a tiara was a must!

So were temporary tatoos. My students (and even my dad) insisted the dusty rose I chose for the day was really lavender, so mid morning I bought a hot pink tee the firefighters were selling.

Dad showed his support, too, and wore pink and helped judge our contest. He even covered the table two mornings!

Marlisa Goldsmith, from KRBC, showed up to cover our contest and our efforts to raise money for the Hope Fund for free mammograms to women in need and for the American Cancer Society.

Students gathered to compete against me.

We had some phenomenally pinked-out folks!

But these two win hands down.

We lose too many loved ones to breast cancer, too many friends. How many of us are really untouched by cancer? Honoring them, their fights, their lives, is such an important thing to do.

A little effort, four days of sitting, visiting, and selling, and we raised $756 for the Hope Fund for Hendrick Hospital. And I got to wear a tiara and have raspberry pink hair while doing it.

Wherever you live, whatever your situation, there is something you can do to help others. The American Cancer Society is in need of volunteers to help get cancer patients to their chemo and radiation appointments. If you can't drive, maybe you can do something else, like my students did this week, like cutting out breast cancer ribbons to be sold for a dollar at Taco Bueno. We can help bring about big changes by doing our small part. We can change the world, one little step at a time, and we can make some of the best friends of our lives, all by making a little effort.

This weekend, my students and friends and my family will gather at our local Mr. Gatti's, where we will have a blast, eat pizza, play games and socialize. And in the doing, we will raise $5 per person for the local food bank and $5 per person for Autism Speaks. Even something like choosing to spend your Saturday evening having a good time at a pizza joint on a specific night can make a difference in the lives of many people.

How awesomely cool is that? And I get to do that in costume. Even better.

*To Stormy and James, who were there everyday all day and integral to pulling this off, thank you for working tirelessly on this and all our other fundraising efforts. To Casey, for being there for every event, love you, sweetie. And to my most magnificent, awesome students, you are wonderful people with a lot to offer the world!

Thursday Sunrise

2011-10-27T06:07:00.005-05:00

Awe and majesty.

Wednesday: In Which I Notice a Trend

2011-10-26T06:43:00.001-05:00

Oh how quickly the arrogant, cocky, self-sure fall. There I was last week proclaiming how SMOOTH the mornings were, other than the boy, and now yet another morning in a row, those three are proving to be obstinate, frustrating, loud, obnoxious, and incapable of choosing.

I fixed part of it. At least the choosing. I'm so sick of the words "I'm thinking!" Now, they have one minute to choose. If they don't, they're eating whatever they had the day before.

We prize choice in our society, but Barry Schwartz's Paradox of Choice shows us why too many choices is actually detrimental to our happiness levels. Now, if you know me, my personal thought is no choice is necessary--get it all!--but my kids are often incapable of choosing. It would be easier to never make them choose, but then how will they ever do it?

The reality is that I don't have all day to let them choose their breakfast. Giving them an appropriate amount of time and then making the choice for them (what they chose the day before) solves the problem and will hopefully help them make the choice the next day. It doesn't mean they won't still drive me batty, though.

Why can't they be more like me and just eat the same thing every morning? Sometimes no choice is the best choice of all.

Tuesday Interlude: In Which I Pretend

2011-10-25T06:18:00.001-05:00

I'm going to pretend that there aren't grumpy children behind me in the dining room.

I'm going to pretend that Rosie's decided what she wants for breakfast.

I'm going to pretend that Lily didn't just argue with me about her wearing socks with MY boots to school today.

I'm going to pretend that I can breathe through my nose, that my throat doesn't hurt, and that I don't have a headache.

Hah, and while I'm at it, I will pretend that I am slim, glamorous and wealthy. :) And that pigs fly.

The Beginning of a Very Pink Week

2011-10-24T07:53:00.000-05:00

This week, we're running a breast cancer awareness week at my college--spearheaded by my students, friends, and me--to benefit the Hope Fund at Hendrick Hospital, to provide free mammograms to women in need. Another professor and friend, Terra, with Jacky and Alicia Andreatta, is spearheading the main campus efforts, which benefit the American Cancer Society. Today, we'll both be at the Abilene campus together.

We've got lots of fun planned. We have informational tables, fundraising tables, a speaker lined up for tomorrow and free pizza, and a Pink-it-Out contest Thursday, where students will have to work hard to out-pink me. After all, it is day 24 of wearing pink for me!

In preparation, I tried once again to get my hair pink. :-) This time, a good friend came out to the house and helped make my pink dream a reality.

In the process!

Rosie's looking on.

The back.

The side.

The students will have to work

awfully hard to out-pink me!

Breast cancer is a serious issue. According to BreastCancer.Org:

About 1 in 8 U.S. women (just under 12%) will develop invasive breast cancer over the course of her lifetime.
In 2011, an estimated 230,480 new cases of invasive breast cancer were expected to be diagnosed in women in the U.S., along with 57,650 new cases of non-invasive (in situ) breast cancer.
About 2,140 new cases of invasive breast cancer were expected to be diagnosed in men in 2011. A man’s lifetime risk of breast cancer is about 1 in 1,000.
From 1999 to 2005, breast cancer incidence rates in the U.S. decreased by about 2% per year. The decrease was seen only in women aged 50 and older. One theory is that this decrease was partially due to the reduced use of hormone replacement therapy (HRT) by women after the results of a large study called the Women’s Health Initiative were published in 2002. These results suggested a connection between HRT and increased breast cancer risk.
About 39,520 women in the U.S. were expected to die in 2011 from breast cancer, though death rates have been decreasing since 1990 — especially in women under 50. These decreases are thought to be the result of treatment advances, earlier detection through screening, and increased awareness.
For women in the U.S., breast cancer death rates are higher than those for any other cancer, besides lung cancer.
Besides skin cancer, breast cancer is the most commonly diagnosed cancer among American women. Just under 30% of cancers in women are breast cancers.

White women are slightly more likely to develop breast cancer than African-American women. However, in women under 45, breast cancer is more common in African-American women than white women. Overall, African-American women are more llkely to die of breast cancer. Asian, Hispanic, and Native-American women have a lower risk of developing and dying from breast cancer.
In 2011, there were more than 2.6 million breast cancer survivors in the US.
A woman’s risk of breast cancer approximately doubles if she has a first-degree relative (mother, sister, daughter) who has been diagnosed with breast cancer. About 15% of women who get breast cancer have a family member diagnosed with it.
About 5-10% of breast cancers can be linked to gene mutations (abnormal changes) inherited from one’s mother or father. Mutations of the BRCA1 and BRCA2 genes are the most common. Women with these mutations have up to an 80% risk of developing breast cancer during their lifetime, and they are more likely to be diagnosed at a younger age (before menopause). An increased ovarian cancer risk is also associated with these genetic mutations.
In men, about 1 in 10 breast cancers are believed to be due to BRCA2 mutations, and even fewer cases to BRCA1 mutations.
About 85% of breast cancers occur in women who have no family history of breast cancer. These occur due to genetic mutations that happen as a result of the aging process and life in general, rather than inherited mutations.
The most significant risk factors for breast cancer are gender (being a woman) and age (growing older).

Make a difference and give to the cause. Whether it's your time or your money, your help matters.

Roses

2011-10-23T19:53:00.003-05:00

Dirt: A Review

2011-10-23T12:15:00.001-05:00

When Susan Senator asked her facebook friends if any would be interested in reading her new novel, I jumped at the chance. She had me with the title. I love gardening, and it has been my solace, my comfort, my breathing room over the last two decades of parents children with special needs.

It's Susan's first novel, and one she's worked on for several years. She gets it all right. The characters breathe, they are all likable, believable people struggling to do the best they can under enormous pressures.

It's an interior novel with snippets of action, but its power lies in the opportunity to spend time in the minds of the characters as they try to make sense of themselves and their relationship with the others in the family. Gardening frames the narrative beautifully, and makes the movement in the novel flow and have external meaning.

Although the novel ends with no clear resolution, it ends on an up-note, a sense that Emmy and Eric, the parents, have moved through the darkness, the winter of their discontent, and will be able to work together with more compassion for each other and for their children, to do what's best for each child in the family.

Their lives have revolved around Nick, their autistic son, to the detriment of their marriage, their other two sons, and themselves, and perhaps to Nick's detriment, as well. They are disconnected and their reactions to each other in moments of stress are entirely believable. They find support in Tom, the just-right speech therapist who helps the family to reach a moment of resolution to reach out to each other, to seek help, to weather the storms that inevitably face them.

I devoured this book this weekend, reading it as a word document, and found myself lost in it, scrolling through it as if I were sprinting for the finish line, eager to see what the next page would bring.

It's a realistic novel; things don't magically get better, problems don't disappear, but what does crystallize is the parents' intention to see each family member as the unique individual he is, and to honor that individuality and the specific needs and issues rather than focusing on how those individuals revolve around Nick and his needs.

It's an excellent novel, one of the better books I've read that incorporate autism into its narrative and one I can wholeheartedly recommend.