1/26/2012

What I Didn't Want

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. 

1/17/2012

Ways to Deal with Important Appointments

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.

1/16/2012

The Decisions of Life and Death



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.’

1/15/2012

When the Disability Community Works



 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


A Tall Drink of Sweet Tea

Autism Wonderland



Discovering Downs


Dom Giordano Show

Dominick Evans

Fairfield Patch


I Can Has Autism

I Like it Frantic

James's Project



Life With my Special K's

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

Little Bit Quirky





The Domestic Goddess

The Flight of Our Hummingbird

The Guardian



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:

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!

1/14/2012

Jingle Jangled

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!




1/13/2012

Ibit Redone, or Looking at What We Carry With Us

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.

1/12/2012

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

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.

1/09/2012

Monday Monday

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.

1/08/2012

Giant Buddha Head







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

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 for three years this March. I’d say the community has changed, but I’m thinking it’s more that I changed over the years. People still bicker about the same kinds of things (some of the people are the same ones who’ve been at it for years), and the divides seem to be more entrenched than ever before, if you go looking in those places. I try to avoid that, now.

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

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

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

I don’t want what I do to be a reaction to other people. I want it to be proactive and compassionate. I’ve written over the last year about how I regret the way I first approached the vaccine wars. Almost without reservation, I am disappointed in myself over what can be perceived as attacking people personally.

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

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

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

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

That doesn’t mean I’ve gone all soft and mushy with no clear positions. There are some things I am certain are wrong. There are people in our online community who I believe do tremendous damage to others and who, I think, do so intentionally with the sole 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 a respectful, appropriate way to counter the woo and those who peddle it, and I work harder now to find that way.

Countering, my blog, has absolutely changed in the last 34 months. I think it’s a change for the better, and I know that how I approach things, how I handle adversity will continue to evolve. Do I miss the chances at snark? A little bit, but it’s just not worth it if that snark hurts someone else. My kids are watching me, reading me, looking over my shoulder. They’re out 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 kind of person. We must, I think, ultimately be the change we want to see.

1/06/2012

The Fear of the Future


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.

1/05/2012

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


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.