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Archive for the ‘advocate’ Category


geneThose of you who follow my blog and those of you who know me know that my Sweet Girl, my middle daughter, is Autistic.  You know that the sun rises and sets around her as it does with my other daughters.  I am not just her advocate, I am also her ally. I’ve written about raising her up to be proud of every part of herself. I’ve written about teaching her to be a self-advocate. I’ve written about experiences in public, and how various individuals have responded to her various behaviors and comments we’ve received. I’ve written about and shared news articles about Autistic teens and young adults who have had interactions with law enforcement that had no training or care about being in the presence of disabled individuals and the abuse and deaths that have occurred as a result. I’ve written about the high rates of abuse and bullying that occur among Autistic individuals and other individuals with disabilities, how it’s much higher among neuro-diverse individuals than among non-disabled and non-autistic peers. I’ve written about my disdain for Autism Speaks.

Now, I’m writing about Google and its collaboration with the project Aut10K created by Autism Speaks.  What is it, you ask?

Here.

Nature World News: Introducing The World’s Largest Autism Genome Database (click)

 

Autism Speaks announced a collaboration with data supergiant Google Cloud Platforms to make the world’s largest database of genomic sequence information on individuals with autism spectrum disorder (ASD), creating an invaluable autism research tool that can be used anywhere in the world.

Book Wright, the co-founder of Autism Speaks, announced Tuesday that the organization would be collaborating with Google to launch the Autism Speaks Ten Thousand Genomes Program (AUT10K) – a project that intends to make the world’s largest private collection of DNA samples open to the public.

We already know through reputable research for the past couple of decades that Autism Spectrum Disorders are genetically based.  Yes, it’s suspected that in some instances environmental factors can trigger or exacerbate symptoms but there’s really very little doubt among legitimate scientists that ASD is genetic, is typically hereditary, blah blah blah.  Why this seems to be news to the world, I don’t know.  Why it’s news to Autism Speaks, I really don’t know.  Except instead of Autism Speaks embracing this news in order to embrace the community and start including Autistic individuals in making decisions about themselves, in making proclamations about themselves, AUT10K is happening.

Autism Speaks is still trying to portray themselves as Autism Advocates, as allies, but this project is going to do far more harm than good.  It’s because the goal of Autism Speaks is to continue to portray autism as a tragedy, something separate from the individual, something to be cured, and as an illness.  They continue to portray the belief that autism should be cured, eliminated, reduced because autistic individuals are too “expensive” in their medical care costs and education costs.  Michael Rosanoff, associate director of public health for Autism Speaks has been quoted as saying about a cost study,

“This study shows us what we’ve all known but never had the data to support — that autism is alarmingly expensive.”

They also have an info-graphic about it.I didn’t doctor this, I just took it directly from their site (I think it was Facebook).  It’s used to illustrate the idea that Autistic individuals are a burden on society, a COST to society.  Do we understand the implications of that language?  Let’s reduce the cost, is the implication.  How do we reduce the cost? Cure, eradicate, eliminate.  Sounds an awful lot like encouraging society to endorse eugenics.  COST TO SOCIETY via Autism SpeaksEugenics is scary, people.  It’s something many have applied to their belief systems in order to explain their despicable attitudes towards individuals that have various disabilities.  Click on this link to see:  Bad Cripple: A Reply to “What Should We Do About Severely Impaired Babies”.  People really believe this stuff.

Autism Speaks launched the AUT10K project in collaboration with the Hospital for Sick Children’s Centre for Applied Genomics in Toronto.  This is a fact.  They view Autistic children, teens, and adults as sick individuals that need to be cured.  This is a repeated theme in their info-graphics and on their web site.

So, you want to know how this project will be harmful?  Check out these reliable links.  They’re not propaganda sites, they’re Autism Advocacy pages.  They’re pages run by Autistic individuals.  THEY are the people that you want to listen to.

Autism Women’s Advocacy: Dear Google, Do No Harm.

Autistic Self Advocacy Network: Community Concerns Regarding the Google-Autism Speaks Ten Thousand Genomes Program (AUT10K)

Google – Stop supporting Autism Speaks and AUT10K (with petition at Change.org)

As always, I could go on but today I’m not really feeling well.  I’m home sick and having trouble concentrating.

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Veruca SaltWhen I got home from work I had to go have a talk with one of my neighbors because of a situation with another neighbor’s out-of-control daughter.  The girl is in 2nd grade, a year behind my daughter and in the same grade as my friend’s daughter. Veruca moved into the rental house across the street from us at the beginning of the school year, and while she was a bit abrasive in the beginning, I thought that maybe she just needed to settle into getting to know the girls on the street and in her school.  She needed a chance.

I don’t typically blame children, especially young children like this in second grade, for inappropriate behaviors when I suspect that there are parenting issues and/or surrounding family issues at home.  By inappropriate behaviors, I mean going beyond being coarse and abrasive and an overly strong personality.  I’m the mom who teaches ALL of my daughters to try to determine if someone just has a strong personality and maybe social differences as opposed to outright being a bully.  I’m the mom who listens to her daughters while gently coaching them to remain sensitive souls, but to try not to take harsh personalities and attitudes personally.  I NEVER use the words “toughen up” or “develop a thicker skin” with them because that implies something is wrong with my girls.  I don’t want them to lose their own sense of worth and I think that their sensitivity is important.  It makes them sensitive to when other children are bullied and they step in and stand up for those children.  They stand up for their own sisters.

So we gave this girl a chance, the entire time letting my youngest know that playing with this girl was entirely her choice and I would never force her.  I told her that if she chose not to play with her at any time she would be allowed to tell the girl why.  Giving Veruca the benefit of the doubt hasn’t worked, I’m sad to say.  She has gotten worse instead of better.

I’ve learned that Veruca comes from a split family, and she’s often upset that her father lives several states away seeing her rarely.  I’ve learned that Veruca dislikes her stepfather, especially now that she has a 3 year old little brother and a nearly 1 year old baby brother (both of whom she adores).  She’s jealous of the obvious love and positive attention that they get, and the lack of attention she and her older brother get.  She and her older brother are very close, and he’s protective of her, and they’re disciplined more harshly and unfairly than their younger siblings.  They are not, however, parented.  We live on a busy street and the one and three year olds are allowed outside alone.  It takes at least half an hour before she notices the three year old is gone.  Veruca’s mom relies on the hope that other families are outside and watching out for her children.  Her little ones tend to run straight for the road unless they think my friend’s children are in their pool and then they’re sent over in their bathing suits and floaties without waiting for an invitation.  These are things I’ve witnessed firsthand or things that Verucal has told me.  I’ve caught her in several lies too and called her on them.  Whenever I call her out, I’m firm but gentle… I’m parental.  :-)  I don’t play games.  And I’m teaching my daughters not to play games because I want them to be mindful of how their actions and words affect other people.  I want them to be kind, but also to know how to defend themselves and each other.

Veruca is, simply put, not nice to any of my daughters.  She says some outright mean things, things I don’t care to repeat, but they’re clearly intended to be hurtful and she knows they’re hurtful… she waits until adults aren’t around.  She waits until the adults that she knows will chastize her because she’s bullying those children.  When my eldest is outside with her sisters keeping an eye on them, Veruca sasses her and is fresh.  Again making sure that no adult is present when it happens and tries to act innocent and as if she was misunderstood when she gets caught and overheard by an adult.  She offers to let Sweet Girl ride her scooter and then shoves her off of it.  She pushes Sweet Girl off of my other daughter’s bike.  She insinuates that she thinks Sweet Girl is dumb and stupid.  She has asked me what’s wrong with Sweet Girl, why is she behaving “wrong.”  She’ll ask my youngest to come out to play or come over when she sees her, and then when my friend’s daughter comes outside she’ll just run off and leave or say, “I don’t really want to play with you.  G is outside now.”

Luckily my other daughters stick up for Sweet Girl and tell Veruca she’s out of line and it needs to stop.  If my daughters get fed up enough to tell her straight out, “You’re being mean and I don’t feel like playing with you.  If you don’t leave I’m going in the house,” or “you haven’t been treating me nicely when we play, and you’re not nice to my sister, so I’m not going to play with you,” or when she knocks on the door tell her, “No, I’m not coming outside with you.  I don’t feel like playing with you any more,” she runs home to tell her mother how mean my girls are.

AND YET not once has her mother come to my door to find out why this happens, why my daughters tell her they don’t want to play with her, or anything.  She never comes banging on my door to tell me how mean my girls are for, well, anything.  Why not? Your daughter is upset with mine, don’t you care? You wave to me every day and expect me to watch your child at the bus stop when I help my friend and watch her child at the bus stop, but you won’t come to my house to find out why your daughter is upset?

So the situation with my friend.  Since I’ve been responsible for helping her get her daughter on the bus before my own girls’ bus comes, I’ve been able to witness up close some inappropriate behavior.  I’ve witnessed her outright say rude and mean things to my friend’s daughter… just vicious things… and saw that sweet little girl’s face crumble at hearing someone who was supposed to be her friend say vile things.  Namecalling.  Commenting on her appearance and her hair.  Calling her ugly.  Commenting on whatever she thinks will land a torpedo.  I called her out immediately telling her how inappropriate and mean it was, and how hurtful she was being to my friend’s daughter.  Instead of apologizing she first said that she had NOT said anything, that I heard wrong.  I corrected that business right away.  She then said that I misunderstood and she was joking, and as an adult I should have realized she was joking.  I told her that you never say cruel things like that even as a joke.  This happened three times on separate occasions and I finally told her that if it didn’t stop I’d be telling my friend.

From then on, she has made sure not to do it in my presence but she does do it.  Yesterday all of the girls were in my friend’s pool.  When my friend briefly went in the house, Veruca told my friend’s daughter to look under the water with her goggles and then full fledged mooned her.  She also flashed her privates.  Ok, kids may be kids but my friend’s daughter was upset and told my daughter, knowing my daughter would tell me.  She’s afraid of retaliation.  I found out last night and since you don’t really text this sort of thing, I told my friend face to face after work.  I introduced it as “this is my experience” and “my daughters had the choice to play with her but a situation at your house yesterday has escalated it to my daughters no longer being allowed to be around her and here’s why.”  I told her about how just minutes earlier when I was waiting for her to come out of the house, Veruca invited my daughters into the pool to play with them, and I said no to her.  Three times.  At the same time we said, “Obviously my/your girls don’t need an invitation because it’s open invitation even when we/you aren’t home but…” the fact was that this girl made the invitation when she had no idea if it was ok and it wasn’t her pool to begin with.

I then found out that she and her husband are aware of the inappropriate behavior and they’ve witnessed a lot too.  They’ve been debating cutting off play time with their daughter but they didn’t know about the bus stop incidents I mentioned.  We compared notes and some of the things I heard… curls my toes.  Most of what we compared matched.

We witnessed some gutsy behavior right then and there.  Some of what we already discussed about both Veruca and one of her little brothers.  Later when I walked home, their mother was only just coming outside wondering where her son was not even knowing Veruca had gone to get him and put floaties on him and tried to sneak him into the pool.  We had mutual concerns as to why we let things go on so long… we each didn’t know the full extent of the ridiculousness.  I know I’m being vague, but trust me, there are some issues.

I found out bullies other kids on the bus and in school and is in constant trouble for it.  My daughters were feeling like they were being targeting specifically, not knowing that they weren’t really “special” and Veruca essentially behaves this way all the time.  In fact, she’s worse when she’s not around my girls and my friend’s daughter.  Veruca doesn’t have many, if any, friends at school because she’s known as a bully and the children are either afraid of her or don’t like her.  My friend’s daughter and until yesterday, my daughters, have been her only playmates… her longest running playmates… because our daughters and we moms felt bad for her.  We also feel bad that there aren’t more young girls on our street for them to play with.  Not any more.  My friend stated that she’s going to tell her husband, and he’s going to say it’s the last straw and they’re going to do what he wanted to do since the first month the girl’s family moved in: not allowed to play with Veruca.  I’ll be honest now… I felt within the first two meetings that this is how it would turn out and debated pulling the plug right away.  I wanted to give her a chance and teach my daughters the value of giving someone the chance, of second chances, and prayed that Veruca would take those chances.  I hoped that if she was told directly enough times, and if when she was nice the reward was being played with, she would change her behavior and attitude.

I’m really sad that didn’t happen.  I’m proud of my girls.  I’m sad that they put up with it so long, but I think we all felt trapped having her live across the street and banging on our door constantly.  And we really are the type to give everyone a chance or six and the benefit of the doubt.  Until my girls get hurt.  Until my friends’ children get hurt.  Then I feel guilty that I let it go on so long.

I love my friend and her family, and I love her daughter.  My daughters and my husband love their family and especially their daughter.  It had to be done, and I know if it were my daughters, I would need to know so I could make an informed decision.  I feel bad for Veruca because I think that there’s a lapse in parenting and discipline that tells her that her parents care. My daughters have viewed this all along as a teaching moment, thankfully, and knew that I was open to them saying they never wanted to play with Veruca ever again.  I took the burden away.  They were relieved to finally have the fallback of, “We’re not allowed to hang out with you/spend time with you/play with you.  It’s time for you to leave.”  They have scripts in place for whatever her responses may be.  I’ve told them that first time or two she comes banging on the door, I’ll handle it if they feel too nervous to handle it because after all, I’m the mom.

I think they’ve all handled themselves really well so far.  I’m raising some great little self-advocates.  And I’m sad that Veruca turns out to be Sweet Girl’s first bully and whenever it happens I’m not there.  Never again.

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Today’s post is inspired by this blog entry on another blog I follow:  i like being autistic | a diary of a mom.  I had this in my head for a while, but as usual Jessie over at Diary of a Mom seems to read my mind, heh heh.

A couple of weeks ago, we were out at a barbeque.  It was a gorgeous day; sunny with a few clouds and a breeze; hot but not unbearable in the sun; completely perfect in the shade.  All of my daughters were enjoying their day playing with their friends and having fun.  Sweet Girl was having a great day interacting and self-advocating and even finding foods to eat. I sat for a while talking with someoneat the party and we got to talking about Autism as frequently happens. She asked me some questions eager to learn about ASD in general and some questions specific to Sweet Girl, and she became thoughtful.

Then the Big Question that I dread more than any other, and am inevitably asked.

“Do you ever wish she didn’t have Autism?”

I tried to explain that I love her, that her ASD makes her unique, and I wouldn’t change her.  The questions came about along the lines of,

“What about the difficult moments”

because obviously, I white wash those moments for people when she’s having a great day… because I want her and our family and friends to enjoy those days.  When they see her, she’s on her best behavior most of the time.  She’s “on.”  She’s at an age now where she’s self-conscious about melt-downs, and it’s not something that I ingrained into her.  She’s never much liked anyone even seeing her cry.

I give them glimpses into her behaviors and the rough moments and hours and days if it seems they really want to know… most people who know her, though, have seen it firsthaStillnd.

Still, it’s exhausting to talk about.  I also realize that it contributes to the negative down-talk about Autism.  It perpetuates the belief that Autism is more negative than positive.  It perpetuates the belief that as a parent, I must want my “real child” rather than the autistic one.  I’ve blogged about her, and still do, about the bad days.  It’s partly what the blog is for.  It is, after all, my blog and yes, as a parent, I need support but I need it as a parent to three children.

“I would not change her, even for the most difficult moments.  I won’t lie, it’s hard.  But she’s wonderful.  I couldn’t change her.  I couldn’t take away such an important part of her.”

I tried to explain all of the positive up-talk that we’ve spent years doing, how she’s not the only one working hard to cope with a world not made for her… we’re working hard to live in that world WITH her.  We’re working hard to understand her.  We’re working hard to make sure that she knows that our efforts are never to change her, but to help her learn new things and use her knowledge to be more independent.

We’re working hard to try to allow her to become the best self-advocate she can become, and prepare her for future relationships and jobs and life and we maintain a negative outlook and view her ASD as a negative thing… it does no good. If we view the ASD as our obstacle, then we’re bound to struggle harder and grow to resent it.  Instead, the obstacles are better viewed as things that we and she need to educate ourselves on and learn to cope with.  Her personal obstacles and difficulties are things we help her with every step of the way.

Some days are great, some are bad.  Some of the concepts she gets eventually, and some are much harder. I always have to go into something with her assuming that she understands what I’m teaching and encourage her to ask questions.  I assume intellect and willingness to learn.  I want her to always assume that I love her in spite of her most difficult traits, the same as her sisters and her daddy and other family and friends.  She’s no different that way. But suddenly I could tell I was losing this person I was talking to.

I was “teaching” too much.  Sometimes I lecture without meaning it to come out that way.

I decided to try a different tack. I did something that I usually only do in private, a game that we play that has helped reinforce just how valuable her entire self is.  I knew I was taking a risk in asking her at all, at having her response be to tell me,

“SHUT UP! MAY YOU NOT SAY THAT TO ME?!!??”

I called Sweet Girl over to us and got her engaged.  I asked her the question I’ve asked before:

“Hi Honey.  I was wondering, would you like me to hold onto your Autism for a while? Maybe put it in my pocket and keep it safe?” (other variations have been asking if I might borrow her Autism)

“NO! You may not have my Autism! It is MINE! I need it!”

“Okay! Just checking!”

We had a smile over her response, I gave her a hug, and she skipped away.  I counted myself lucky that she didn’t scream at me for asking a clearly stupid question.  She would have been justified.  I felt Sweet Girl had made the point herself very firmly and more succinctly than I ever could.  My dear 11 year old self-advocate.

I’ve been catching her on my Kindle recently going through the photo album, which is directly connected to my Facebook photos.  She’ll pore through those photos for hours.  Sometimes she’s looking at the cats’ pictures; sometimes her little cousin; sometimes when she and her sisters were little.  But sometimes… sometimes she’s looking at the Autism Info-Graphics and inspirational quotes and images.  She touches them and caresses them, smiling.  Sometimes she asks me why I found them and shared them on Facebook so that she can hear me say,

“I saved them and shared them because you’re special to me, and that means your Autism is special to me too.  It’s part of you and I love every single bit of you.”

::nodding:: waiting for more:: “Yes, that is good.”

“I’m happy you think so, honey.  I love you just the way you are, just as much as I love your sisters, always, and the things that make them special too.”

::nodding:: wanting more::  “Yes, mmm hmmm.”

“I want to teach people that don’t know about Autism that Autism might be hard for you sometimes, but it has lots of great things about it too.”

“Yes, I have my Autism.  Do not take my Autism.  No one can have it, no one can take it away.” ::frowns:: “No one should take it away.” (this was after a discussion when she asked about an info-graphic that talked about ‘cures’ and the thought of curing her ASD made her angry) “These are MY pictures, Mommy.  You saved these for ME.”  ::soft smile::

And there you go.

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Using All The Spoons

Using All The Spoons

I think I’ve said that flare-ups suck donkey balls.  I’m fairly certain that I’ve said it, but if not, I’ll say it now.

Pain flare-ups from Fibro suck donkey balls.  Especially when said flare-ups last more than just a few days or a week.  I’m going on a little over a month.  Feels like it’s getting worse instead of better.  I can understand why some who have Fibro turn to narcotics or to medicinal Mary Jane.

I’ve been in such a bad pain flare-up that I just can’t seem to get out of it, and I’m having trouble now caring about how I handle it.  Not caring about avoiding trigger foods; it’s an effort to ignore the danger foods at picnics and as a guest at someone’s house.  Not caring about how much pain I’m actually in as long as I can rest and not think about much.  Reading helps.  I doze if I watch TV.  The chronic fatigue hits badly during this flare.

I can’t even muster up enough energy to feel discouraged.  My body is tired, my brain is tired, and I’ve been feeling Mom Guilt over not being available for all of the girls’ school things the way I should be.  The way I promised I would be, and I promised wouldn’t change when I went back to work.  I never imagined my weekends would be for recovery and I would dread going out anywhere most times on a weekend, especially on a Friday after work.  I dread going anywhere on a day after work.  I’m off today, though, to attend a PPT and for another appointment.

Since starting work again, my social life has definitely tanked.  I’m just too tired.  Friendships have suffered.  My wallet enjoys the paycheck for sure.  So do our groceries and bills.  But I’m nearly too tired for anything else.  Gracie frequently asks me when my boss is going to fire me.  My youngest, 9, recently informed me that she also hates it when she’s home and I’m not there to greet her off the bus.  The girls are all three of them upset that the “new” routine of 19 MONTHS now means I’m not home as much as they’d like.    They’re upset that I’m in more pain more often, and it seems to them I’m more tired all the time.  I probably am.  So, you know, Mom Guilt.  Especially when I have to send The Husband in my place.  The sad thing? The girls are getting used to it and don’t complain much any more when I’m in so much pain or feeling so sick from the pain that I can’t go with them all.

Weekends are usually used, when possible, to recover from the week.  I try to take it easy and do what needs to be done at a leisurely pace.  Of course that isn’t always possible.  The flare is not going away, and I wonder if my inability to have any sort of recovery time is to blame.

The past two or three weekends were unheard of.  Just on Memorial Day weekend: two birthday parties and a barbeque, one party for each day of the long Memorial Day weekend.  This weekend we had my beautiful niece “Kay” sleep over and she’s just a joy to have around no matter what.  Thinking about her is making me grin while I write this.  Then Sunday after bringing her home, we celebrated three more birthdays and stayed out all day long.  I overdid it both weekend.

I did wake up with a new pain in my right shoulder which could be due to being manipulated and maneuvered by my PCP yesterday at my physical.  I could have slept wrong last night, but in any case it’s there.  Sharp.  Worsens when I walk or move my left arm (what???) or turn my head or try to flip pancakes.  I’m going with “happened during the physical because of how she made me position myself.”  OH!!! I’m so special that she likes to see me for an annual physical every six months now.  ::sigh::  But here’s why I love her: she has clearly done a lot of homework regarding Fibromyalgia.  She wasn’t quite as knowledgeable the last couple of times I saw her.  She was ok with the knowledge but a lot of it had been somewhat outdated.  This time she was on the ball and up-to-date and far more compassionate.  She’s always been compassionate but she was able to connect so many issues I’ve had for years and asked me a lot of questions and said,

“Oh, don’t blame yourself on this.  It’s the Fibromyalgia.  You try.  You work hard.  But you still have the Fibromyalgia and that makes it harder.  I’m not worried about your weight.  Maybe you now pay attention and eat more calories and get more fat… your body is making too much sugar and you don’t get enough calories.  But you eat right, you are active and you work and spend time with your family.”

I do love this doctor.  She’s really good, with a great bedside manner.

I was so anxious about going to that appointment.  I always have anxiety going to my physicals.  When I walked in yesterday it was an increasingly high pain day, and she noticed.  I think everyone noticed.  I think I’ve fooled myself into believing that when I’m having breakthrough pain, pain that my Gabapentin can’t reduce my daily pain to “still hurts but is tolerable and can be ignored,” I can still hide the face that I’m having severe pain.  Pain that, if I weren’t taking the Gabapentin I would be writhing on the floor crying.  Anyway, she noticed and was very gentle and I could see the compassion on her face.  I didn’t see that compassion on my rheumatologist’s face.  I’m still certain that my rheumatologist thought I was drug-seeking.  Luckily my PCP knows me and has since I was 25.

We actually talked about that yesterday: pain management and being fearful of looking like a drug-seeking addict.  She turned to me and said,

“Don’t ever say that.  You need to manage the pain.  Pain is not good for the rest of your health.  If you’re in pain, you can’t be healthy or do anything.  Besides, you went far too long to even ask for help managing your pain. ::scoff::”

And then I remembered how she has tracked my pain, and how when I asked her how to go about diagnosing and getting a rheumatologist, etc, she chastised me for waiting so long to ask for help managing the pain (gently and like a mother).

I know, pain is a bummer of a topic but hey, it’s sort of in my face right now.  It’s not really a bootstrap moment.  But that’s another blog entry.

I know I have a lot to be grateful for.  I’ll even do a gratitude journal, which I haven’t done in a long time.  It’s not about not being grateful.  It’s not about not counting blessings.  It’s about, well, the nature of depression, anxiety, and the pain that came and triggered it.  The pain is just so much to deal with that I think when it gets this bad for so long, my brain breaks a little bit.  My word recall and memory are sucking wind.

Hell, just do a search in my search bar for “fibro fog” and Fibro and you’ll find a mess of stuff about why I feel this way in my brain.  My brain is so foggy right now I don’t think I can go through the whole fact thing again and repeat it in this entry.  It’s already taken me five or six stops and starts and several revisions on this entry.  :-)

I know I’ll shake it off eventually.  For now I think I need to feel this.  I need to go through it and cycle it.  I make great efforts to remain positive as long as possible every day, but I admit that it’s much more difficult when the pain is so high and I lose hair in handfuls from the flare up, sometimes three times in a week.  Maintaining the positivity and the hope for extended periods of time… well… that can feel fake and make the anxiety and depression feel worse.  But then I don’t want to bring anyone else down.  That feels stressful and… I snap.  And I know I’m not as nice as I should be.  I find it harder to censor my brain-to-mouth stuff, and people look at me funny.  Well, half the time it’s probably because it came out with words in the wrong order or I stated the definition of a word instead of the word itself.  But with my nice-filter off… oh, I’m not nice.

I can be vicious.  I don’t like being vicious.  It’s worse if I feel as if someone has personally attacked my character and motives.  It’s much, much worse if I don’t get my morning coffee.

Pain, pain, go away, come again, like, never.

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Tone It Down, Don't Feed the Fear

Please Do Not Feed The Fears

I’ve been meaning to post this one for a while, but you know how life gets in the way of that “publish” button.  So here it is… pushing “publish.”

We’ve come a long way, Baby.  A long, long way.  Supposedly, in 1975 only 1 in 5,000 children had Autism Spectrum Disorder.  By 1985 that number had doubled to 1 in 2,500.  No one noticed.  No one really knew what Autism Spectrum Disorder was quite yet, unless you count Rain Man (1988?) with Dustin Hoffman’s character, who the movie claimed was an autistic savant.  Oh, Rain Man.  That movie is really a bane to ASD since the Rain Man‘s character was based on Kim Peek who had Megasavant Syndrome, Macrochephaly, and FG Syndrome but did NOT have Autism Spectrum Disorder.  The movie tried to put a positive view on ASD and bring attention to the disorder, trying to help dispel the stigma of ASD and that part is good… but it also gave the impression that savantism is typical for autists and it’s just… well… not.  Dustin Hoffman’s portrayal of autism was simply inaccurate, especially when taking into account that the character was based on a real man.  Then when people who know very little about autism except what they think they’ve learned from the movie Rain Man find out that my Sweet Girl is autistic they’re surprised because she’s “not like Rain Man.”  I can’t tell you how much restraint it takes to keep from growling and snarling,

“BUT THE REAL RAIN MAN WASN’T AUTISTIC! GOOGLE KIM PEEK!”

Ahem.  Sorry, I do that sometimes.  I didn’t mean to wander.

When my Sweet Girl was first diagnosed, the Autism Numbers were “1 in 166 children are on the Autism Spectrum.”  That was 2004-ish.  In 2007 the numbers appeared to shrink to 1/150 and people started to feel uneasy.  In 2009 the numbers appeared to shrink again to 1/110 and panic was clearly settling in and vaccine denialism started to become a real epidemic.  Then in 2012 the CDC released new numbers… 1/88 and people lost their fucking minds.  Jenny McCarthy became someone to revere and even though the completely-discredited-by-multiple-actual-real-unaffiliated-with-pharma-scientists-who-also-proved-during-investigations-that-he-hoaxed-results-and-original-faked-study-and-article-in-The-Lancet-was-retracted Andrew Wakefield lost his license as a doctor and is not allowed to practice medicine, he’s still be touted as a reliable source regarding vaccinations and Autism Spectrum Disorder.

The CDC recently put out new numbers that one in 68 children are estimated to be on the Autism Spectrum.  Every time this number changes, people panic.  People want to find the CAUSE, the BLAME, the REASON for this TRAGIC EPIDEMIC!!!!!!!!  Because of course we have to figure this out and PUT A STOP TO IT so that NO ONE ELSE HAS TO SUFFER!!!!  We have to SAVE THE CHILDREN!!!!  WE NEED A CURE!!!!! WE NEED TO FIGHT! AUTISM!

Right? I mean… think about this.

Can you tell me what’s going on that paragraph? What do those words imply? Can you figure out what’s wrong with the language in there that I see every single day from people who are suckered into vaccination denialism and Autism Speaks Rhetoric Disorder?  The fatalistic language.  Can you imagine being a child of a parent that’s using that language? There are many adults that have or had parents that used all of that fatalistic and negative language that make it sound as if Autism is a disease that needs to be stamped out, that Autism is damage and therefore YOU are damaged?  Can you imagine growing up knowing that’s how your parents feel? It’s common language coming from the parental community.  Who is suffering? The autistic children? The autistic adults? Who asked the autists if they were suffering? Oh wait… maybe it’s the parents who are suffering and shouldn’t be because they didn’t ask to be parents of autistic children.  Why does there have to be someone to blame? What’s the tragedy? What needs to be cured when Autism isn’t a disease? Why are we “fighting” Autism? This isn’t a war and we aren’t fighting a thing… we would be fighting PEOPLE.  Autism isn’t separate from our children or teens or adults.  They ARE Autistic.  Autism isn’t a label.  It actually is a state of being, a state of the brain, a state of functioning that can’t be turned off.

All of that language is affirming only to parents who want to continue feeling victimized… but don’t realize that Autism hasn’t victimized them nor has it victimized their children.  Autism Speaks did that to them.

We have to take a hard look at the Autism Speak induced language that is used.  Even their very own informationals are anxiety-inducing. This is THEIR image… I didn’t futz around with this:

COST TO SOCIETY via Autism Speaks

“The Cost Of Autism.”  Every letter in that image is capitalized.  They really want to get their point across in this Autism Speaks informational image that every single autistic individual is a costly endeavor not only for their poor, undeserving-of-being-afflicted-with-an-autistic-child parents, a monetary burden, but they’re costly and a burden to society.  The COST OF AUTISM IS A COST TO SOCIETY!  Cost = Burden.  Hell they even put a dollar value on how much a burden our autistic children are.  It can’t be much more obvious than that.  It’s obvious with every single informational that Autism Speaks puts out.  It’s obvious with what they do with their money and who they allow on their boards and who they allow to make their decisions about what “should” happen to autists.  They are burdens that need to be lifted, and to do that we need to “research” to find out what caused the reason for them being a burden so that we can cure the reason.  Except there isn’t a cure.  It’s not a disease.

I have an image that clearly depicts some facts about Autism Speaks that are disconcerting, and I apologize for the size but any smaller and you won’t be able to read it.

 

Please Do Not Donate To Autism Speaks

Know The Facts About Autism Speaks: Please Don’t Donate

 

Something else started to happen over the past few years since the “OMG! EPIDEMIC” numbers came out.  Backlash from adult autists.  Because you know, Autism not being an ILLNESS or a SICKNESS can’t be an epidemic.  That’s elementary.  Autistic adults have been lifting their voices in different ways (thank you internet!).  Autistic adults are writing books, articles, blogs, starting Facebook pages, doing research, contributing to society in a more public way than before.  Sharing FACTS about what it’s like to be autistic.  What it’s like to have the language that attempts to separate the ASD from the individual when in fact, trying to do that is dehumanizing.  Advice for parents of autistic children.  The best advice I ever heard in how to raise my daughter has been to read blogs and articles and books written by autists.

Do you know that I’ve seen online discussions between parents of autists, and adult autists who have told them straight out that the language they’re using, Autism Speaks induced language, makes them feel dehumanized and minimized and that it offends them and that it hurt them as children when they couldn’t express it, that those parents tell them “That’s not true because my child knows I love him/her.  You are not my child.  You’re wrong about the language.  The language I’m using is correct and I’ll keep using it until my child is able to tell me which language he/she prefers.”  They insist that Autism Speaks is wonderfully supportive and brings positive attention and awareness to Autism.

Except it doesn’t.  The attention it brings is negative, and none of the information is from the autistic viewpoint.  It fosters the initial stressful, anxious, mourning reaction that we parents feel when we hear the diagnosis that our child has ASD and related diagnoses.  Those are instinctive feelings when we feel guilt and worry because we know that not only are we as parents in for a rocky road that we weren’t prepared for as parents, but our children aren’t in for as smooth of a path as we imagined before they were born or conceived.  We mourn the loss of the life we imagined, the perfect life that wasn’t going to be perfect anyway, but instead of adjusting the same way other parents that have children with neurological and/or physical disorders and/or genetic disorders we get stuck in an emotional quagmire because when we look for support groups and resources just like every other disorder out there, we see Autism Speaks in our search results first.  They’re highly rated and hey, TV networks promote them.  Trusted magazines and specialists, doctors, local stores, national stores, national and worldwide companies promote them and donate to them.  They even offer special products during Autism month so that a portion of those sales go specifically to Autism Speaks! As a parent just starting out trying to figure out the new normal, it can take a while to figure out that they’re really not legit.  They’re really a parental support group, promoting the sorry-for-yourself parental support by endorsing the Autism Is A Tragedy That We Need To Cure And Prevent mode of thinking.

They don’t promote acceptance.  Acceptance is what is needed, desperately.  It’s needed for the sake of holding families together and for the sake of the parents’ sanity and for the sake of the autistic individual most of all.  We don’t want any more generations of autists growing up thinking that they’re Less Than.  As Temple Grandin wrote, Different Not Less.  That means EQUAL.  It doesn’t mean that ASD isn’t still a disorder.  Someone that has Down’s Syndrome or Bipolar Disorder or Diabetes I or Dementia or Fibromyalgia or is Deaf is Different Not Less, they are EQUAL, while still maintaining that their diagnoses are very real and shouldn’t be minimized.  Acceptance is key.  And Autism Speaks is not accepting of Autism at all… because the implication of their rhetoric means that the research they’re supposedly doing and funding would be to eradicate Autism.  Detect Autism before babies are born is one goal.  Can you imagine the implications of that?

No one can live in that constant state of anxiety and fear.  I’m not talking about we parents.

I don’t have a great segue into this next bit, so here we go.

What does this new number released from the CDC actually mean? What does 1/68 mean?  This is a great blog that explains it but the main thing I want you to get out of this blog entry at the Thinking Person’s Guide to Autism is “Don’t panic… Tone it down.”    So click on this here:

Thinking Person’s Guide to Autism: Keep Calm and Think Critically: The CDC’s 1 in 68 Autism Numbers.

 

There’s another problem.  The CDC sucks donkey balls not only at obtaining accurate ASD numbers across the country (honestly the sampling referred to in the article is ridiculous) for children, but it’s nearly non-existent for adult autists.  That means that it appears as if with the currents statistics that there’s an increase in ASD rates and that there are far more children with ASD right now in the U.S. than there are adults with ASD.  The reason this is important is that if they did that, they would likely see that the rates of ASD have been stable and are equal between children and adults.

Want to see something really cool? I mean really, really cool.  The UK did exactly that.  When they say 700,000 people ie. 1/100 of the population they mean children and adults.  This is a really Big Deal.

 

How many people in the UK have autism? Click here

Around 700,000 people may have autism, or more than 1 in 100 in the population.

There is no register or exact count kept. Any information about the possible number of people with autism in the community must be based on epidemiological surveys (ie studies of distinct and identifiable populations).

The latest prevalence studies of autism indicate that 1.1% of the population in the UK may have autism. This means that over 695,000 people in the UK may have autism, an estimate derived from the 1.1% prevalence rate applied to the 2011 UK census figures.

The prevalence rate is based on two relatively recent studies, one of children and the other of adults. The prevalence study of children, (Baird G. et al., 2006) looked at a population in the South Thames area. The study of adults was published in two parts, Brugha et al (2009), and The NHS Information Centre, Community and Mental Health Team, Brugha et al (2012). This is the only known prevalence study to have been done of an adult population.

(click on the link in the subject line of the article to see much more from the article)

 

I’m trying to bring all of these thoughts into one cohesive “Ah Ha” for anyone reading this.  I know I’m not reading as being very linear today.  Blame the Fibro Fog.  All right.  Here’s what all of this means to me in my heart:

My Sweet Girl is 9 1/2 years old now.  Since she was diagnosed so many years ago in preschool, she has come a long way in so many areas and I’m so very proud of her.  Early on I became uncomfortable with Autism Speaks and couldn’t put my finger on it.  I prayed on it.  I think  I blogged about it. It was a huge turning point for me because that’s when it stopped being about me and more about her.  I started to ignore Autism Speaks and their language, and I sought out blogs and support groups run by autists where I learned about their dislike of Autism Speaks and certain other groups.  I continued my education about Autism and the related issues that my Sweet Girl has, and let her know that I don’t want her to change.  I want to help her learn to cope and get an education so that she can learn how to get around in a world that wasn’t made with people like her in mind.  We use positive language regarding ASD, and we don’t keep it a secret from her.  She has a great IEP team at school, and she attends the meetings now.  If she chooses not to attend, I bring a list with her concerns and wishes on them and her team takes it all seriously.  They’ve actually made positive changes due to what she wants and it’s helped her.

Since making these wide sweeping changes in how I think, it’s changed how I advocate and treat her.  She’s better able to self-advocate.  She’s proud of her ASD and values it.  This isn’t to say that there aren’t incredibly difficult, downright miserable days. moments, hours, but the positive have been outweighing the negative.  We’ve both matured.  Her sisters are her advocates.  Her CLASSMATES are her advocates and while they know there’s something a little different about her, they don’t really know.  Her teacher told me recently that all of the girls and most of the boys (this is the first year boys are involved, eek!) are very protective of her and they all adore her.  They ALL notice if she’s not participating in social activities so they ALL encourage her and include her in everything.  If her feelings get hurt they all do their best to explain situations to her, and if she hurts someone’s feelings they explain to her why their feelings were hurt.  I’ve never seen that in 5th grade classrooms.  Her teacher has never seen this.  The children in this class are so genuine with her, I’ve seen it and it fills my heart.

The social stuff is still hard.  That’s ok.  The need for perfectionism is hard.  That’s ok.  The intense passion over certain subjects can be difficult.  That’s ok.  The meltdowns, the sensory processing issues, the eating issues, it’s all ok.  We’re working with it.  We’re teaching her and disciplining her, just in a slightly different (not less, but equal) way than other children.  I’m learning different approaches and language that might be useful when disciplining her and even how to approach her during the escalation of a meltdown (not a tantrum) and teaching her how to identify when she’s about to have one.  We’re teaching her that it’s ok to “not speak” or “not make eye contact.”  We’ve taught all of our girls that they have the right to refrain from giving permission to having anyone touch them… whether it’s a kiss on the forehead or a gentle hug or a touch on the cheek… with thanks to sensory processing disorder.  Who knew?  We’ve been able to find alternatives to an immediate hello, an immediate welcome hug or kiss, with a finger wiggle that says ‘Hello.’  Because you know, Autism or not, you still should be polite when it’s possible.  Reminders of manners still occur, but when she’s unable to say hello or be courteous to society standards or family standards I happily stand up for her without apology.  I know that she’ll come back later to say hello on her own terms in her own way.  Because I gave her that permission while still trying to teach her Society’s Way.

Since making these changes in how I think, my own stress about her ASD has reduced dramatically.  Do I still feel anxiety occasionally? Yes.  The biggest difference is that I don’t wish things were different for her or for me or our family.  I ACCEPT her Autism completely, even in the midst of the worst of her meltdowns.  As hard as those meltdowns are for me to get through with her; as scary as the meltdowns can be for her sisters; as disconcerting a they can be if they occur in public with people staring; I know that the meltdowns and the challenges and the difficulties are hardest for her to get through.  Sweet Girl is the one experiencing the sensory explosions, the emotional upsets, the takeover of her brain and body.  I see the panic that occurs when she realizes she can’t control it but wants to… and that’s the moment she accepts my help.  I let her experience what she needs to experience before that.  I let the fire burn what needs to burn before I enter that building.  I pick my moment.  I speak low, gently, and offer sensory input of her choice.  I offer a different location that’s quiet and unoccupied and safe.  I let her stim to her heart’s desire in her safe place if she needs it.  This isn’t easy.  I’m not always patient.  I’m not always good at this.  What gets me through enough to help is knowing that she’s not doing it on purpose, she’s not enjoying it, and those moments are the rare cost of the rest of her amazingness.  I don’t use the word amazing very often.  I don’t want it to lose meaning.

Since my own anxiety has reduced, so has hers.  She’s been more independent and is more willing to try doing new things.  I speak to her with respect and assume that she understands what I’m saying until she makes it clear that she doesn’t.  I ask her if she understands or needs me to “say it a different way.”  I respect her boundaries, although sometimes I forget.  She has a lot of rules, you know.  ;-)  She knows I try.  Instead of smothering her with hugs and kisses when I feel the urge, I tell her that I want to hug her and kiss her but won’t because I’m respecting her… and she smiles.  Sometimes she’ll tilt her head toward me so I can kiss the top of her hair where she won’t feel the kiss.  Sometimes she offers a spontaneous hug.  Sometimes… rarely… if I say to her, “I love you, sweet girl,” she says, “I love you” back.

Sometimes she can go from being Miss Grumpyface who’s ready to move out and find a new family after a meltdown to sitting with me for a snuggle and asking me to help her create a recipe for a new idea she has.

Positivity.  Positive advocacy.  Allowing her to self-advocate.  Being the parent she needs and wants.  ACCEPTING and loving who she is.  There’s no mourning over Autism in this house.

 

*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

There are several places I love to visit for support:

The Thinking Person’s Guide to Autism
Diary of a Mom
Autism Women’s Network
ThAutcast

I know I’m missing some, but those will get you started.

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It’s no secret that this is not a household that supports or will support Autism Speaks, monetarily nor in action.  I won’t get into why here but will save that for another post.  One of the “things” that belongs to Autism Speaks is Lighting It Up Blue.  Before I knew or checked out that it originated with Autism Speaks, we happily did it and encouraged it.  I even turned my Facebook images blue for not just a day but all of April.

I was bound and determined that I wouldn’t wear blue in order to Light It Up Blue today, which is of course World Autism Awareness and Acceptance Day.  Swore up and down it wasn’t going to happen.  I’ve been discussing it and explaining why on my Facebook.

Then last night happened.  My youngest daughter said,

“MOM! MOM! I heard you say tomorrow is World Autism Day! The school is doing this thing!”

Then my middle daughter, my sweet autist, immediately followed up by gushing with,

“Mommy you have to wear blue tomorrow! Everyone is wearing blue for ME!”

“Yes they are, honey.  Yes, they are.”

The two of them together were quite a pair, talking about how the school made announcements and the teachers were talking to their classrooms about Autism Spectrum Disorders and what a special day April 2nd is, and how special all of April is for people touched by Autism Disorders and autistic individuals.  As a WHOLE! SCHOOL! they were going to SHOW! SUPPORT! with the WHOLE! REST! OF! THE! WORLD! and it’s just really the biggest spirit day ever for my daughters.  After all, my daughter believes that this whole worldwide day and month is set aside just for her… and the school dressed all in blue today just for her.

When she asked me to wear blue to show my support for her special autism, how could I say no? How could I bum them out with the rhetoric of “why we don’t support Autism Speaks and their stuff?”  How could I say no when my girl thinks that blue was chosen specially because it’s her favorite color?

It’s simple.  I didn’t.  I wore blue after all.

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Source: https://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&docid=NuIqSZjxBauA8M&tbnid=S6HgtM3YkTX2-M:&ved=0CAQQjhw&url=http%3A%2F%2Fhittingthewall.paulglover.net%2F20130509-fibromyalgia-awarness-day-2013-show-someone-in-pain-you-love-them%2F&ei=QSgwU-n5OcK0yAGF8oGwCA&bvm=bv.62922401,d.b2I&psig=AFQjCNEOFLYng877JZKQ1bt8jREYuBaWug&ust=1395751334502767

Fibromyalgia Awareness: Pain Flare Up

I’ve been working my way through what feels like an endless flare and as each day goes by, it seems harder and harder to get through.  Of course I still get up each day and as each individual day goes by, the day is harder to get through.  It’s par for the course, really, but this has been a really long flare that’s been going on for well over a month.  I’ve had mini-flares within the flare.  Weekends let me know just how badly I’m really taking care of myself during the week by slamming me with the CFS.  I wish I could give in to it, but 3/4 of the time I really can’t.  When I do, it’s sweet heaven and drifting into sleep, pained as it is, gives me the only relief I can get sometimes.  I’m still on a half dose of my Fibro med and have about seven days left on it before I can titrate up.

But now? During this past week specifically? The CFS is starting to kick in during the week.  I’m having worse trouble in the mornings not just getting up out of bed (that’s always a given) but waking and shaking off the grogginess.  I’m afraid it won’t be long before I can’t hear the blaring alarm that’s next to my head nor feel the vibrating phone alarm under my pillow.  I’m feeling the CFS at work now.  I’ve been successful in shaking it off at work, but I’m worrying about reaching a point where I can’t shake it off so that I might not be able to drive home. I already keep my cane close by and use it frequently.  During my flares I use it nearly constantly.  My balance is much worse; I can fall over out of nowhere for no reason; my sciatica gives me bursts of searing pain and completely goes out on me; I get other back pain and myofascial pain and other random pain that requires the support of the cane so that it helps ease things.

I was out at the store a week or so ago to run an errand and a lady came up to me to tell me that she used to use the same cane.  It’s purple with colorful flowers all over it.  I thought she was coming over to be nice.  Then she said,

“I was at a therapy session one day and my physical therapist saw my cane and asked me why I used it.  I told him why and his response to me was to throw it away and just stop using it.  And do you know he was right? It was the best thing I ever did.  You should do the same thing! It will be the best thing you ever do! You’re too young to use a cane!”

The smile that I’d had on my face must have faded instantly and I must have had daggers suddenly shooting out of my eyes, because the smile she had been showering me with faltered.

“That’s so nice for you.  I don’t suppose you have Fibromyalgia like I do.  I wish I could just throw away my cane.  I’ve done physical therapy but it not only didn’t work, it made my chronic pain disorder worse.  The cane helps me relieve some of the pain, but without the cane I wouldn’t be able to rely on my balance and I would fall more often.” 

Then I saw a light bulb.  I had been afraid I would see a slack jaw.

“Ah, I have a friend that has Fibromyalgia.  My mom, God bless her, had it too.  I understand.  Bless you.”

Then her smile returned and I felt at ease again enough to return her smile.  As I continued shopping I started to feel a different kind of unease and my frustration returned because I kept turning that incident over and over in my mind.  As I’ve gone over the past week (or more) I’ve continued to think about it.  I’ve been trying to figure out why it continues to nag at me.  It’s more than the immediately apparent unsolicited advice.  It’s more than the rampant incorrect assumptions being dumped all over me in that exchange that lasted all of 3-5 minutes.  It’s more than how quickly a seemingly positive random interaction soured.

Then throughout the past week or so, I found that I was paying more attention to how people respond when they realize I’m using a cane or I’m in visible pain.  When they can “see” my invisible disability by proof of the cane they’re very polite and smile and will give way.  People sometimes will offer to give me their place in line if they see I have fewer items in my cart/basket.  People are even more compassionate if I have my girls with me and they’re on their best behavior with me.  If I’m feeling tired and I’m sure it’s on my face, again, people are even more compassionate.  If I’m moving slowly, carefully, and purposefully, people are kinder and gentle.

But only if I’m smiling.  Only if I don’t let the pain visibly show too much in my face and posture.  Only if I can manage to control vocalizing unexpected bursts of severe pain that take my breath away.  Because if I’m not smiling… if I look like I’m ready to cry… if people can see just how much pain I’m in and maybe even hear it then the discomfort is palpable.

As it turns out, my pain and discomfort and feelings of sickness due to the pain aren’t really about me.  Of course not, why would my disability be about me? The things I go through are about everyone else.  I’ve always known this on some level, but I didn’t realize until recently just how much.

I can’t just deal with my pain and try to get through it.  I have to help others through my pain as I’m trying to cope with it myself.  I have to reassure them and explain it to them.  Until I thought about it, and thought about specific recent incidents in a new way, I didn’t realize just how much effort it takes to put up the appearance that my pain isn’t nearly as bad as it is even when it’s so bad that I can’t hide it and it breaks through and takes my breath away and I shriek.   I realized that I could not only see the discomfort others feel over my pain but that I was actively pushing against it trying to care-take others’ feelings and worries about my obvious pain… even strangers.

I reassure people that I am, in fact, all right (fine, even) and “this is normal for me.”  Because somehow, if “it’s normal for me” then I must be used to it and I must have a high pain tolerance.  I do have a high pain tolerance, but come on.  Pain is pain.  Severe pain is severe pain.

People will ask with fear, “Are you all right?” and I can tell that they’re hoping I’m going to minimize the situation, brush it off for them.  It’s rare that I tell the truth about how bad it is.  It’s par for the course.  It’s my normal, yes, and I have to get used it.  I have to endure it. Even when my baseline pain increases, I just have to get used to it.

I have to say I’m fine because it’s expected.  No one wants to hear the details of pain or what Fibromyalgia is like or what it means for my life and my family.  No one wants to know what struggle it is for you to even be standing up right in that moment.  You suddenly feel like you’re that elderly relative that’s asked how they’re doing and they give you the laundry list of every single ache, pain, illness, bowel movement, skin tag removal, kidney stone, colonoscopy, and family gossip because you see That Look come over the other person that lets you know they just don’t want to hear it.

Except I’m not really all right. I just can’t let anyone know how “not all right” I am because pain like this? Nonstop, constant, chronic pain that has severe flare ups? It’s taboo.  I’m not really supposed to say, “No, I’m not all right.”  If I say that then that implies, apparently, that I have expectations of other people to actually physically or verbally or emotionally help me and I shouldn’t impose that on people when it’s not their business and they don’t know what to do.

Maybe that’s what’s most uncomfortable for other people.  It’s uncomfortable because they don’t know how to make it better (they don’t have to make it better), they don’t know what to say or do, they don’t know what’s appropriate because there’s no rule book.  If someone else’s pain can’t be easily soothed because it’s more than surface pain (or what I call Less-Than-Labor-Pain Pain or for men to relate, Less-Than-Kidney-Stones-Stuck-In-Your-Urethra-Pain Pain that never, ever stops) this “look” comes over someone’s face.  This look that says my pain is not only uncomfortable emotionally for them but it’s an inconvenience.  I’ve put them into a position where they have no choice but to think about and deal with something that they haven’t ever had to think about before.  I’ve put them into a position where they can’t actually help.  I’ve put them into a position where they have to witness someone else’s pain and discomfort and yes, agony, and they don’t know the right thing to do.

 

What’s right is:

  • Please, try not to make someone else’s disability be about you
  • Please remember that those of us who have chronic pain are not lazy or making it up
  • Please don’t judge us as drug seekers… we are trying to relieve pain that causes many people to commit suicide; and if we are on pain relieving medications, don’t assume that we’re addicts.  If the medications work in some manner then they’re doing their job
  • Please remember that we are not intentionally inconveniencing you no matter how frustrated and annoyed you may feel over our pain
  • Please understand that we are not choosing this and if we had the choice we would make it stop forever and ever, Amen
  • Please know that without a doubt, we have tried every natural non-narcotic remedy that we can think of because we are desperately afraid of the mere whiff of appearing to be a drug seeking narcotics addict even if the pain relief medication/s we take are not narcotics nor addictive
  • Please remember that as uncomfortable as you are about someone else’s chronic severe pain, that other person is far more uncomfortable than you are 24/7
  • Please treat people with respect… not just people that have disabilities, but all people and that way when you see someone that has a disability you don’t have to wonder how you’re supposed to treat them
  • Please don’t apologize
  • Please don’t assume that you’re required to help unless we ask you, but we always appreciate heartfelt offers of help
  • Please be compassionate

 

Do I sound bitter? My apologies.  This flare up over the past nearly-two full months is having an effect on me that’s not pretty.  I’ve had ever-increasingly worse CFS due to the pain.  I think I said that already.  Fibro Fog is sort of chucking me on the chin here.  It’s easy to tire because the pain comes on so badly that all my body wants to do is attempt to sleep in order to escape.  Soon I’ll be allowed to titrate up from the lowest dose of the medication I’m on, which should help, so I pray that my insurance won’t take the stance that I’m a drug-seeking addict even though my prescription isn’t for a narcotic.  You know, because they’re idiots.

After all, I have laundry to do.

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Photo from GabeZimmer.com

Tongue Tied

My eldest is watching some show about a boy band, and there was a song with a catchy tune.  Gracie was half-listening while watching her little sister play a video game.  All of a sudden she comes into the living room paying more attention to the song with a horrified look on her face.

“It would not be good to be tongue tied!”

“What are you talking about, honey?”

“Having your tongue tied would hurt! It would be BAD!”

I realized that she had a mental image of someone’s tongue being tied in knots or something similar.  Maybe it was tied like a bow on a shoe.  Still, I had trouble hiding the slight smile on my face because she had misinterpreted the phrase but mainly because I was imagining what I knew she was imagining.  Then suddenly we were both giggling.  After a few minutes she was puttering in the kitchen making a snack and I could hear her giggling.

When she came back into the living room I explained what being tongue tied meant according to the song.

“So honey, when someone says they’re ‘tongue tied’ it’s a saying.”

“Oh no.”

“Yes.  It means that they’re having trouble saying what they really want to say.  Like in the song the boy wanted to tell the girl that he really likes her a lot and maybe loves her but she makes him nervous so when the words come out of this mouth they come out jumbled and garbled.  Tongue tied.”

::eye roll::

When I showed her the photo I’m using for this entry she smirked.

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Originally blogged on the blog:

love explosions

when the love for your child overwhelms you

Tone it down. Please click those words, the ones that say Tone it down.  I really can’t add anything useful to that blog post because it was stated all so perfectly.  Read about why a person’s tone of voice doesn’t make their side of the argument invalid.

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Image From Rainy Day Gal

Girl Scout Samoas Cookies

We got back from Gracie’s Girl Scout meeting a little while ago. We have the meetings in one of the historical houses in the historical district, and the girls have their meetings in one room while waiting moms like me usually wait in the kitchen and listen at the doors or play on our cell phones or help with the meeting when asked (well actually, I’m there on hand in case The Girl needs me for some reason although she’s at a point recently where she would probably do better if I weren’t there).

It was a difficult meeting for her today because her SPD was in high gear. At first she came to me begging to leave, telling me,

“It is Too Loud. I need to leave now.”

I was proud of her for the fact that she self-advocated and told me very clearly what she wanted and why.  That said, I asked her to try to find a way to make it through the meeting in case Miss Girl Scout Leader had something fun planned.

She took some “emergency gum” from my purse and chose to sit at the kitchen table, listening to the meeting that took place in the next room.  When it came time to participate she would go in briefly but she still couldn’t handle the noise for long.  At times it got so loud that she would close the kitchen door leading to the meeting room to almost-shut.  When that happened,

“They are too loud.  I need to close the door so that I do not hear them.”

Again, she self-advocated for herself in action and explained her actions.  She was polite about it, but firm.  She didn’t announce it to anyone except to me.

She got to do her crafts at the kitchen table and was so happy about that.  Thank you, Miss Troop Leader, that made her day.  The girls made little cookie trays with tiny felt cookies that were turned into a pin.  The felt cookies were supposed to be chocolate chip, but since Gracie’s favorite cookie is the Samoa she turned hers into a tiny batch of Samoas.  She’s the only that did.  There was another cookie pin that was supposed to be a cute Thin Mint with a bite out of it and a phrase on it that said, “Hey who took a bite out of my Thin Mint cookie?!?” She was appalled at the thought of anyone taking a bite out of her Thin Mint and then pinning it to herself or her vest, so we didn’t cut out a bite of cookie.  Instead we pinned the little tag with a Samoa sticker on one side and her cookie sale goal on the other (100 minimum).

She kept pretending during all of this that the tiny cookie tray she made was burning hot just-from-the-oven, giggling as she did so.  On the way home, Gracie couldn’t speak but she processed the meeting.  Every now and then she giggled while holding the “hot hot hot tray.”

By the time we got home the slight rainy drizzle had turned to pellets of … frozen something … but she liked the sound so we sat in the parked car for a few minutes to listen to the quiet sound of the almost-snow pelting the car.  She sighed, gathered herself, and when I asked her if she was happy that I had “made” her stay at the meeting instead of leaving when she asked, she didn’t respond …

… but she didn’t say “no.”

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