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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.


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.


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.

 

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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.


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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