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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.


Source:  Goista.com

Turks and Caicos Islands, Mommy’s Vacation

It’s official; I have a high school student, a brand new middle schooler, and a fourth grader.  Wow.  I’m so proud of all of them.  Today is the first day of their summer vacation, and as it happens it’s the first day of summer.  Cool.

I’m having my first real weekend day of having nothing to do or worry about.  My Darling Girl is playing on my cell phone, trying to find as many promo clips as possible for “How To Train Your Dragon 2.”  The Princess is upstairs relaxing, playing Mario something or other on her DS.  Sweet Girl is at a birthday party for a good friend at school, her first one since kindergarten.

It’s quiet, as it should be on this beautifully sunny and not-too-hot day.

I might even get a nap later.

HA HA HA HA HA!

No, really, I’m aiming for a nap.  In spite of the current seeming calm, I was rudely awakened too early this morning.  Sweet Girl was upset about something her Daddy said about her skirt and washing it.  Chocolate chip pancakes fixed all that, along with a suggestion to, you know, wear a clean skirt.

A nap will help me process just how old my girls are getting.  Yeah, that’s it.

So the girls’ vacation starts today, but mine doesn’t start until August.  I can barely stand it.  I need that beach.  If I fall asleep on it, see… my children won’t wake me up while I’m on it.  I’m going on a Momcation with a few friends in a month and a half.  It’s our 40th Birthday Year celebration.  More on that later.  I’m hoping if I get a nap later, my Momcation will be in my dreams.

Of course I’d love to take the girls somewhere this summer too.  The Husband wants to go to the Cape.  I want somewhere less… boring for the girls.  This may take some research, especially since we have to keep the drive manageable.  It may end up being near the holidays, though, to give us more time to save some money.  I’d love to bring the girls back to New Hampshire after it snows and Christmas lights are up everywhere.  Maybe it’s not too late to find a place to go camping for the weekend and we can get a decent tent with a decent air mattress.  Or rent a cabin, ha ha.  That would be awesome for “camping.”  They could use a tent, and I’ll use a cabin that has electricity.

Eh, or we do the Cape.  They’ve got beaches and hotel rooms there.


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.


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.


I figured it out! Why my shoulder/shoulder-blade/myofascial pain has been so agonizing since I got up yesterday.  I blamed my PCP from my Monday physical.  I think she’s only partly to blame.  Well, not her directly but those terrible examination beds.

I think the real cause was getting kicked and punched all up and down my entire right side from my thigh up to my shoulder from a particular child who really, really, really didn’t want to get out of bed and then didn’t want to get off the couch to continue getting ready to go to school.  I think she hit a Fibro trigger point and some nerves.

It’s only slightly better this morning.  I can function better, since I was able to keep up with the pain management, and getting some coffee into myself this morning = happier Jessica so far.  By the time I got back from, well, all appointments yesterday I was nearing “vicious” and I hope to avoid that today.   My mood certainly didn’t improve by getting stuck in traffic for two HOURS yesterday coming back from another annual appointment that women love during which my mood had lifted somewhat when I saw that their weight scale weighed me seven pounds lighter than my PCP’s scale.

A drive that usually takes 15-20 minutes.  Two hours.  No.  I almost got smushed and shoved off the road by a pair of semi-trucks when trying to merge into the insanity from other insanity because they were at the point where, you know, I had no choice but to merge and they just wouldn’t allow ANYONE to merge.  So I ended up having to take an exit and I got lost in Hartford and ended up over the river in East Hartford but got home far faster than if I had stayed in the traffic anyway.  So thank you, asshole semis.  You saved me even though you almost killed me.  It almost made the earlier 1 hour and 45 minutes worthwhile.  I should really thank my GPS for this one.  You know, since I got lost.

I need to remind myself to stay off of Facebook on the worst of the worst days.  I usually do, but not yesterday.  :-(

Ok, so can I grow flowers if my husband let grass grow in my plant bed and we just rototill? Or do we have to lay down topsoil before planting? I have a fairy garden to put out and it wouldn’t have been a problem two summers ago.  ;-)


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.


I’ve had this post in my brain and in draft, adding to it and changing it around for well over a month.  Ever since seeing Facebook posts and other online discussions in comments under Autism articles where mothers stated that that they hate their childrens Autism and aren’t ashamed to say it, and not a single one was in a mood to be told that she needed to be accepting because she’s not… that if a cure was found she would grab it with both hands because she feels that Autism takes her son away from her during his worst times.  Oh, and don’t tell any of them how terrible AutismSpeaks is either because they they’re great.  Other moms of course piped in to sympathize, others empathized, one or two using the word tragedy to describe Autism … and here I was extremely uncomfortable and seething a bit inside over the initial statuses and the following conversations.  When I did participate in these conversations, I probably wasn’t always the nicest I could be about it.  I was angry because I was heartbroken for those children.

The words used to describe their children throughout those discussions upset me greatly because those “feelings” of hating Autism were putting it into a box separate from their children.  Without the ASD, they felt they’d have a whole child instead of the supposedly broken one they saw before them when their child displayed difficult or upsetting behaviors or violent behaviors, or behaviors they deemed inappropriate like the all-embarrassing stimming or the ever-frustrating inability to develop at the same rate at their peers and, you know, not know better the way their neurotypical counterparts are assumed to do.

So ok… We’re allowed to feel emotions that don’t quite match what we’re “supposed’ to feel because hey… emotions.  I said this on another Autism blogger’s thread.

“Our emotions don’t always match up exactly with our beliefs, and that’s because they’re emotions. We’ve been having this revolution of owning our emotions and letting people know with a refreshed honesty what our emotions are in a society that stuffs down its emotions and doesn’t know how to be true and that’s been damaging. But those of us who express the conflict inside that doesn’t match up with what we’re “supposed” to feel even while we continue to do what we believe and know is right will be criticized. Those momentary feelings are normal. It’s what we do with them that’s important… and if those feelings become permanent that’s important.” 

I have always believed that from start to finish and I always will.  What I write about next, some I have always felt but some I have evolved to believe.  I used to think of Sweet Girl’s Autism as something she had, as in “it could be apart from her…” You know, in that whole overdone and inaccurate “SHE HAS AUTISM BUT IT DOESN’T… HAVE… HER!!!” kind of way.  I had the cognitive dissonance that let me believe I wasn’t really being hurtful to my daughter and the people she shares a neurology with.  Those words never really matched up with the belief I’ve always held that I never wanted a cure for her.  It’s not a disease or an illness, and I’ve always known that… it’s something she was born with and so why would I want a cure? Why would she?

But if you’ve followed my blog since the beginning or at least the beginning of realizing our journey with ASD, you’ve probably noticed changes in my beliefs about how to relate to Autism and the language I use regarding it, and how I advocate regarding it.  All I can say is Evolution… and a huge part of that is because I have made it a point to follow blogs and Facebook pages galore written by autistic adult advocates.  At the bottom of this entry I’ll share a few of the links to them for you if you’re interested, and I’d love for people to share their own in comments.  I’ll add them to the post.

So anyway, please forgive me and try not to use my words from six years ago (or whenever) against me if they seem to clash with what I’m saying now.  Now is what matters.  I was open to learning then, I’m open to learning now.  I’m not and never will be perfect.

I believe that using the phrases, “I hate autism” and “I wish my child/parent/sibling didn’t have autism”should never be spoken out loud in public, shouldn’t be written down or uttered out loud under any circumstances.

Let me be clear.  I recognize that these are emotional thoughts and we are allowed to have any feelings at all.  We are human.  But emotions are fleeting.  And emotions don’t have to become belief systems.  We choose what we do with those emotions.

I see Autism-hate from parents all the time on “advocate” blogs and articles and on Facebook and it makes me cringe and kills me a little inside every time.  And if it makes ME feel that way as a mom to an autistic daughter, I can only imagine how it makes an autistic individual feel.  I can only imagine how the children of those parents will feel when they catch on that their parents feel that way.

Using those phrases out loud makes them real, gives them substance, and suddenly they’re not fleeting, momentary emotions. They’re out there permanently for eternity and they have weight.  WRITING THEM DOWN for the world to see and then defending those words of hate are there for the child to find without context.  Without compassion.  And then when someone such as a teen or adult Autist calls them on it, telling them how hurtful it is, that parent advocate digs their heels in about their right to feel what they feel and think what they think about their own child’s autism and they become even more invested in the emotion and their right to have it and their insistence that they and their children are suffering and a cure is the only way; that the individual speaking with them must be unusual or have had exceptional supports in place and that THEIR child is SO AUTISTIC (sorry, has autism so badly) that they couldn’t possibly understand.  Then they insist that their child doesn’t have any clue how they feel, and they don’t love their child any less than they would if that child weren’t neurodiverse.  They’re disbelieving EVEN WHEN the Autist they’re speaking with tells them that their own parents felt the same way and tried to hide it and they knew it the entire time as children and it was so hurtful that they felt suicidal.  They’re even told that since they’re communicating well online they must not really be disabled or have ASD nearly as bad as their own child does.

Yes. This happens.

We already have to choose our words very carefully.  When we choose to publicize our experiences and thoughts and emotions, we’re taking a big risk and opening ourselves up to additional criticism.  It doesn’t matter if it’s in a blog entry, an article, a comment on that article, a status or comment on Facebook, or in some parenting community.  We need to be mindful of our audience and the fact that one day our children might read what we’ve written and we need to stop underestimating our children.  Autists are not, after all, Intellectually Disabled.

In real life, when we have a discussion with someone and the other person suddenly says,

“So OMG, Someone did Some Such Thing and I think they have a valid point because insulting reason here.”

“Well that was hurtful and rude”

“No it wasn’t.”

“Yes it was.  I’m telling you it was because you hurt my feelings.”

“No, it wasn’t because I wasn’t trying to hurt your feelings.  I was trying to explain why Someone did Some Such and I think that they have a valid point. “

“Ok, but while you were explaining you said something hurtful, and we’re supposed to be honest with each other.  You hurt my feelings.”

“That’s so stupid.  You should know that I wasn’t trying to hurt your feelings.  I can’t believe you.  I don’t think I can talk to you any more.  You hurt my feelings.”

“What?”

“Insult insult insult”

“Oh yeah? Well, if you just listen I can explain how what you said was hurtful.  It’s because reasons the insulting reason you gave hurt my feelings here.”

“I already told you, I wasn’t trying to hurt your feelings.  You should know better.  Insult insult insult.”

“Whatever, F$#@! you.”

Can anyone in the class tell me how that conversation could have gone better?

And yet it’s a double edged sword because each and every one of us is entitled to have emotions.  We can’t control them.  They’re messy.  They happen.  They happen to all of us.  Many people, including parents of autistic children, believe that Autists are incapable of emotion because they show emotions in a different way than others do.  We don’t realize how hurtful is it to autists when we try to tell them what/when/how is absolutely appropriate to feel and emote.  How hurtful is it when we try to tell them what it looks like to comply but they just can’t… not won’t.

That double edged sword makes it difficult to explain that even though we’re the parents and we try our damnedest to imagine what our autistic children are going through, we can’t when we’re non-autistic.  We need to learn more patience to allow our children to work things through naturally with guidance rather than force… and hopefully the Autism Community will realize that non-autists need the same thing.  Immediacy regarding emotions and changing a way of thinking isn’t possible for most people. I’m the biggest banner waver for Autism, and while I’ve always been an advocate for my daughter even before I knew she has autism, it took me a few years to feel good and completely accepting about it and to not make at least part of it about me.  It didn’t happen right away.

When my daughter has impossible moments, I’m the most understanding I can possibly be and I love her more than I can ever say, that doesn’t mean I’m enjoying it. Do we feel as stress free, happy go lucky, blissful, nonstop advocates for our neurotypical children? Or are we to feel guilty for not loving the entire minutiae of who they are every single instant of the day? Of course not.  Because we love our children, neurodiverse or neurotypical, that doesn’t mean we always like them as people.  ;-)  We don’t always love the behaviors.  This is where understanding comes in, and figuring out if those impossible moments are typical of the age or are part of the neurodiversity.

Is it all right for me to say that there are times I really wish my non-autistic eldest or youngest daughters had little “adjustments” in their personalities or should I beat myself up because people will assume I can’t possibly love who they are? Well… I’m the biggest banner waver for my middle daughter and for autism as anyone. But there are times, just as with my non-autistic children, that are impossibly difficult and I just don’t know how to get through them.  I wish that I did.  I wish that she could help.  I wish that a couple of weeks ago when she was sick it wasn’t as impossible as it was, with her inability to handle puking and oh… the aftermath that we were dealing with and coming back from having to take her to the ER for fluids.

I’m allowed to feel sorrow and helplessness when I’m sitting in the ER watching my daughter get an IV she didn’t want and hates due to the aftermath of an illness that she’s having trouble coping with even though that illness is done… she regressed with eating, drinking, toileting full of fear and anxiety.  She’s 11 and two weeks later she was still relearning how to EAT.  Relearning how to DRINK.  Relearning the signals that tell her when to use the toilet.  Should I be thankful and joyous for that regression?  Of course not.  Doesn’t mean I was hating Autism.  And yet… no, I wasn’t happy for her autism sitting in the ER while she had a butterfly IV in her arm.  I wasn’t happy at the thought of a catheter because she was convinced she not only couldn’t pee but had no pee in spite of the ultrasound.  I was her advocate all the way with a resident at the childrens hospital who just did not get sensory issues or autism and treated her like she had severe intellectual disabilities and wasn’t worth his time.  That aspect of autism kills me.

When she’s sick, and then while she recovers, I’m her punching bag.  I don’t get to recover, and I have to keep on smiling and say, Yay Autism.  Well… We are parents. We take what we get.  This is what we signed on for.  When we chose to get pregnant, follow through with pregnancy, and keep our babies, we signed on for whatever came our way.  No matter what that meant.  We don’t get to say, “I didn’t sign on for this” or “I’m not cut out for this.”  Yes you did and yes you are.  I hate to break it to you but you don’t exactly have a choice in the matter.

We are flawed. We love our children unconditionally and we are our childrens first and best advocates before they self-advocate. The best way we can advocate and teach our children to be self-advocate is to be sincere in loving the WHOLE child… and that includes the Autism in spite of the difficulties.  As difficult as those impossible moments are for us as parents, how difficult must they be for our children?

While Autism Advocacy may dictate our actions even while our children are the midst of the most unloveable and difficult behaviors (which of course are even more difficult for them), we are still allowed to have our own feelings. Most of us don’t share them because even when we have children that are non-autistic (and I do) we’re not ever supposed to complain or be anything other than grateful that we were given the gift of children. We’re not supposed to admit to being weary, or that we’ve got any feelings at all besides love and joy and gratitude over our children and their neurodiversity. Anything less means we couldn’t love them enough or be the best advocates to society.

Well… I recognize that it’s not All Or Nothing. Here’s the secret.  We can control our actions and how we respond to our emotions.  We can also teach ourselves how to redirect our emotions and use them for good.  We’re allowed to have emotions in reaction to the things that occur in our lives but what matters is what we do with them and how we hold on to them. It can be easy to forget but we have many more roles and additional depth in our lives to Autism Advocate Mom. We’re allowed to let those other roles in. When it comes to the emotions dictating the thoughts that Autism should be cured, that Autism is a tragedy, that Autism is impossible… we can CHOOSE to let those emotions remain momentary and not become a belief system.  We can choose to accept all of the positives, and remember that the positives of Autism outweigt every single negative.

No matter our momentary, occasionally negative emotions this does not ever, ever mean that we don’t accept our autistic children.  We (the majority of us parents) accept them 100%. I accept everything about my daughter. I accept the Autism and everything that comes with it.  I’m not always Sunshine Gal and rainbows about it, especially not when I’m dealing with trying to cope with the effects of my own disability.  I know her Autism isn’t about  me, but my emotions are about me and I don’t need someone else to validate my emotions any longer.  And maybe that’s it.  We welcomed this beautiful girl into our lives from the moment we knew she existed in my belly… that meant we welcomed all that would come with her.  That meant acceptance of all of who she is, and still does even when emotions don’t match up to what the most ardent, militant advocates want you to express. And that’s really ok. I promise.  You just really have to remember that words are powerful.  The words you use to describe Autism are powerful.  And you really can’t separate Autism from your child.  They are one and the same.

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