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

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

Then last night happened.  My youngest daughter said,

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

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

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

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

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

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

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

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

Fibromyalgia Awareness: Pain Flare Up

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

What’s right is:

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

 

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

After all, I have laundry to do.

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Photo from GabeZimmer.com

Tongue Tied

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

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

“What are you talking about, honey?”

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

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

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

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

“Oh no.”

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

::eye roll::

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

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Originally blogged on the blog:

love explosions

when the love for your child overwhelms you

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

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Image From Rainy Day Gal

Girl Scout Samoas Cookies

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

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

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

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

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

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

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

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

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

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

… but she didn’t say “no.”

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Gracie had a great night last night.  She was really internally motivated to do not only her reading homework, but the follow up writing.  Then she did some math on the Kindle Fire HD apps for an HOUR and mixed it up with the levels of difficulty and then she did the response.  She went between two different grade level apps (I’ll have to dig up the names of the apps to share them later).  Of course she started with the hard levels, then moved down and asked permission for each lower level but seriously? They’re all hard.  She was able to do many of the problems on each level.  She did a lot of the reading apps too and spent a lot of time putting words in alphabetical order and laughed at a lot of the words.  We talked about the words in the lists and she would tell me what they meant, and asked what the others meant.

 

 

 

She wanted to do it on the Kindle rather than try what was sent home to me first, and since she was so willing to do it for so long I was just so happy she was doing MATH! that I didn’t argue with her.  I want her to see math as fun and if this is how it progresses, then I want her to choose what works.  I’m just so happy right now that I’m tearing up.  I mean… Gracie willingly did math for an hour and ASKED TO DO IT and I had to stop her because she went past her bedtime.

 

 

 

If I ever questioned going back to work, just being able to afford buying that tablet made it completely worth it so that my girl could play with math and have fun.  With math.  MATH.  This is really huge for us.   This girl does everything possible to avoid math unless she’s counting out money at the store for a My Annoying Little Pony.  Or she’s counting her cookie.

 

 

 

Of course now she’s asking for an iPad of her very own.

 

 

 

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English: The location of the nine paired tende...

English: The location of the nine paired tender points that comprise the 1990 American College of Rheumatology criteria for fibromyalgia. (Photo credit: Wikipedia)

I had my first rheumatology appointment.  It was the intake, so it lasted about two hours.  I went in prepared with a printout of every symptom that I have frequently and my history over the years that may have contributed or could have been early signs of Fibromyalgia (or something else).  I went in with an open mind that I was wrong about the Fibromyalgia thing.  Even so, I started to feel panicky when she started to make comments that she didn’t seem to think that’s what I have because it took me so damned long to even get into a rheumatologist and if it’s not what I think it is then who’s going to treat me?

Then she tested the trigger points.  With everything I know about Fibromyalgia (including the damn trigger points) I didn’t even realize that’s what she was about to test.  I thought she was going to test my spine for MS first since we had just finished talking about.  Suddenly I felt like I was exploding from the inside, and everything was about to fall off of me.  I nearly jumped out of my skin and wished I could leave my body.  I admit it… I cried.  I couldn’t catch my breath from the pain.  I’m in tears right now recounting this to you.  It’s a little more than 12 hours later and the trigger points still hurt.  The doctor seemed surprised that when she just (apparently) gently pressed my trigger points I had such a strong reaction.  It was a similar automatic reaction as when you have your reflexes tested with that little rubber hammer when they hit your reflex point at your knee.  Except for the fact that it’s a combination of pain, intense shakiness from within and without, breathtaking, shocking to the entire system with each trigger point, a bruised feeling in a center point that radiates outward to everywhere, the most intense centralized nerve-like pain… I could go on but I honestly am not sure I can adequately describe what it’s like to someone who wouldn’t feel anything at all when their trigger points are pressed.  The intensity is just… there’s an emotional response to go with the physical.  It’s incredibly scary even once you realize what’s going on.  I’ve had it done once before to diagnose the Fibromyalgia and I knew nothing at all about the disease back then, knew nothing about trigger points or what the doctor was doing or why.  I only knew it left me limp and crying.

I was still limp and crying yesterday but at least this time I knew why.  I pray to God and all the Saints that my daughters never, ever have to go through this if only so that they never, ever have to have their trigger points tested even once.  Sorry, I got a little off track.  So the doctor was a little surprised because I think she had decided that I had something else.  She said,

“Oh! It appears you have ‘some Fibromyalgia!’ Do you know what that is? What that entails? You said there are family members with it but are you educated at all about it?”

LOL LOL LOL again.

She asked me this while I was still crying, and in the physical and emotional mess I was already in I just cried harder.  I couldn’t even nod my head.  She put her arm around me and had me lay back on the exam recliner (not a table because let’s face it, people with connective tissue disorders have a hard time laying down all the way on exam tables).  She gave me some time to catch my breath and calm down.

And then she proceeds to tell me what she thinks she knows about Fibromyalgia and how we’ll go about treatment.  Which is that she can diagnose it, but she doesn’t prescribe medications for it.  She can prescribe therapies and she did… hydro-therapy, so yay for that… and she can recommend to either my neurologist or psychiatrist medications that she thinks would help because,

“It’s a neurological disorder brought on by lack of sleep.”

O’rly? is what I think my exact response was.  Of course it must have been paired with an incredulous facial expression because she repeated what she said with a little bit of defensiveness in her voice and expanded a little bit like she was talking to a child.  Given all I know about Fibromyalgia, that was NOT what I was expecting to hear from a top-rated Rheumatologist.  It felt like the appointment came to a screeching halt.  I was so shocked that I had trouble forming a sentence to tell her what I knew.  I see in a month or so, which means I’ll be printing out a metric shit-ton of articles that I’ve shared here proving it’s not just neurological and not “brought on by lack of sleep” but that there’s actually an issue with the nerves.  That it’s biologically based.  That it can’t be remedied with sleep.  I’ve tried.  Chronic Fatigue Syndrome is part of the disorder.  It doesn’t mean I’m not getting enough sleep.  It means that no matter how much sleep I get my body doesn’t recognize it as “enough.”  There will never be enough recuperative sleep or rather… I will always go through phases where my body doesn’t recognize that I’m actually getting enough sleep.

But then this is part of why I’ve blogged about the fact that I don’t think a Rheumatologist is THE Doctor to treat Fibromyalgia.  We need a Fibromyalgist.  Not treatment between several different doctors… a doctor who specializes mainly/only in Fibromyalgia and related/similar disorders.  It’s my own fault for going into this with really high expectations and hopes.  Fibromyalgia may be one of the disorders that this office can diagnose and treat, and call it one of their specialties, but it just means that they’re qualified to diagnose it.  Anyway, there’s more.

She said that we do still need to figure out if there are any additional diagnoses on top of the Fibromyalgia, and she strongly suspects that there may be.  I have to get an X-Ray for something I forgot why because I haven’t had enough coffee this morning.  I have to get some comprehensive blood tests for vitamin levels and various diseases and disorders.  She’s very bothered by the fact that with all of the easily-broken bones and sprains I’ve had since childhood, not one single person or doctor thought to run tests or figure out WHY these things were happening.  She’s very bothered by the fact that no one ever picked up on all of the various infections and illnesses I’ve had being abnormal and WHY didn’t they encourage me to figure out why they were happening and insist on running tests.  I told her that I’ve actually asked the same questions, I’ve asked my doctors and even begged to the point of ordering my doctors to run certain tests that I hoped would give answers.  She’s bothered that not one single doctor except my now defunct gastroenterologist took some initiative in helping me figure things out and pointing me in the right direction.

This doctor is going to help figure out what diagnoses I may have in addition to Fibromyalgia and/or rule out everything else.  And she said that that’s basically all she can do.  She’s a diagnostician.

So I’m really left with a neurologist who doesn’t feel comfortable prescribing Fibro-related meds because it’s “not her specialty” and a reticent-to-believe-in-Fibro-as-biologically-based psychiatrist to take her recommendations and/or be willing to try various Fibro meds until we hit one that works.

Mixed bag right there.  I’m still a bit of a wreck physically and emotionally, so I’m not really sure how I’m going to feel about the appointment itself for a while.  I do know I was excited as soon as she prescribed the hydro-therapy with a real, um, what’s the word? Not just therapist… damn.  Word recall.  Help.  Eep, it’s past time to get ready for work, but I’ll be thinking on this and probably add a new post for anything I haven’t thought of right now.  Coffee may help with that process.  :-)

But blessed Baby Jesus… I pray that no one ever, ever, ever tests my trigger points ever, ever, ever again.  That sucked donkey balls more than I can ever express.

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This morning after CCD, it was easy for me to tell when my husband got home with the girls.  I was sipping my coffee in the living room and the front window was open.  I heard a car pull up, but wasn’t sure at first if it was a neighbor.  Then I heard screeching and shouting and unintelligible insults.  I heard The Mister grunt in pain.  One of the girls lashed out at him.

Princess Number One snuggled on the couch, put her earphones on, and escaped into some music.

Princesses Two and Three continued screeching and I could hear their echoes throughout the neighborhood.  They came pounding up the stairs into the house with The Mister ordering one of them to their room.  I think it was Number Three.  It was confusing.  I just know one of them kicked him.

It was determined that there was much brattiness from the time they got in the car to be picked up and the rest is history.   Gracie apparently wanted a pony.  My Little Pain In The Freaking Ass Pony, of course.  She wouldn’t accept that “not until your birthday” was the response.  I decided that the arguing over it was done, and explained to her that she got her answer and if she wasn’t happy with it that was all right but her behavior and language were not.  She became more disrespectful to The Mister and it was her turn to sit on the stairs for a time out since Number Three was already in their room.

Yeah, she locked herself in the bathroom.  We just waited her out.

She ended up in her room on her own, and I could hear the two of them plotting against me.  When their time out was over, I just let them stay there to bond since most of their fighting earlier was with each other.  When Gracie came downstairs repeatedly to insult me, I explained that her words were hurtful and that’s why she was put in time out in the first place.  After an hour, I told her that she had hurt my feelings and if she felt badly she needed to think about the words she had been using, think the words she planned to use before they came out of her mouth, and change her attitude.  I wouldn’t be letting her treat me badly or get rewarded for it.  She put herself back upstairs, grumbling the whole time about how mean I was to say such terrible things to her.

When it came lunch time, I kicked the three of the girls out of the house to get fresh air.  Gracie came back in after a while because the sun was too bright.  She kept finding things to talk to me about and inform me about.  I took that as reaching out, since earlier her communication was mainly shouting and screeching and insults.  I let her help me make dinner… pasta with homemade sauce.  I let her help me make dessert too… apple crisp.

And then something completely unexpected happened.  I was in the kitchen stirring the pasta in the pot, and I heard Gracie on the stairs calling to me.

“I am sorry.  I am sorry for the words I said.  I was unkind.  I said hurtful things.  I am sorry for hurting your feelings.  I love you.  Please forgive me.”

I didn’t script one word of that for her, and no one else did either.  She wouldn’t let me hug her, but she let me come to her and kiss her hand.

“Thank you, sweetheart, for the most beautiful apology I ever heard.  I am so very proud of you.  Will you come taste test the pasta?”

And so she did.  I let her have the first serving of pasta and later the first serving of apple crisp.

Aw, man… I’m crying again.   I’m crying because she gets it.

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If you know or you suspect that a child is in danger of being abused or worse, you have a duty to protect that child.  Abuse should never, never be considered a private family matter.  It should never be kept secret.  It is far better to report what you suspect and be wrong, than to be right and find out later that you should have made a report and didn’t but the child suffered for it.  If you feel that you may need the help for yourself and your own child, please know that THERE IS NO SHAME IN ASKING FOR HELP.  THERE IS HELP OUT THERE FOR YOU.  You just have to know where to find it.

One resource I’d like you to check out is the American Humane Association (click here).  Here is some information from them below on how to report suspected child abuse, and I have highlighted the 24/7 hotline in red:

How to Report Suspected Child Maltreatment

Anyone can report suspected child abuse or neglect. Reporting abuse or neglect can protect a child and get help for a family—it may even save a child’s life. In some States, any person who suspects child abuse or neglect is required to report. To see how your State addresses this issue, read the Information Gateway publication, Mandatory Reporters of Child Abuse and Neglect.

Child Welfare Information Gateway is not a hotline for reporting suspected child abuse or neglect, and it is not equipped to accept reports of this nature. Information Gateway is not equipped to offer crisis counseling. As a service of the Children’s Bureau in the U.S. Department of Health and Human Services, Information Gateway does not have the authority to intervene or advise in personal situations.

Childhelp® is a national organization that provides crisis assistance and other counseling and referral services. The Childhelp National Child Abuse Hotlineexternal link is staffed 24 hours a day, 7 days a week, with professional crisis counselors who have access to a database of 55,000 emergency, social service, and support resources. All calls are anonymous. Contact them at 1.800.4.A.CHILD (1.800.422.4453).

If you need help with personal or family situations, you may wish to visit our resources on Where to Find Help.

If you suspect a child is being abused or neglected, or if you are a child who is being maltreated, contact your local child protective services office or law enforcement agency so professionals can assess the situation. Many States have a toll-free number to call to report suspected child abuse or neglect. To find out where to call, consult the Information Gateway publication, State Child Abuse Reporting Numbers.

If you’re not sure if you’re a mandated reporter for abuse, here is the clarifying list:

  • Social workers
  • Teachers, principals, and other school personnel
  • Physicians, nurses, and other health-care workers
  • Counselors, therapists, and other mental health professionals
  • Child care providers
  • Medical examiners or coroners
  • Law enforcement officers
  • Some other professions frequently mandated across the States
    include commercial film or photograph processors (in 12 States,
    Guam, and Puerto Rico), substance abuse counselors (in 14
    States), and probation or parole officers (in 17 States).2
    Directors,
    employees, and volunteers at entities that provide organized
    activities for children, such as camps, day camps, youth centers,
    and recreation centers, are required to report in 11 States.3
    Seven States and the District of Columbia include domestic
    violence workers on the list of mandated reporters, while seven
    States and the District of Columbia include animal control
    or humane officers.4
    Court-appointed special advocates are mandatory reporters in 10 States.5Members of the clergy now
    are required to report in 27 States and Guam.6
    Four States now have designated as mandatory reporters
    faculty, administrators, athletics staff, and other employees and
    volunteers at institutions of higher learning, including public and
    private colleges and universities and vocational and technical
    schools.7In approximately 18 States and Puerto Rico, any person who
    suspects child abuse or neglect is required to report. Of
    these 18 States, 16 States and Puerto Rico specify certain
    professionals who must report but also require all persons to
    report suspected abuse or neglect, regardless of profession.8
    New Jersey and Wyoming require all persons to report without
    specifying any professions. In all other States, territories, and the
    District of Columbia, any person is permitted to report. These
    voluntary reporters of abuse are often referred to as “permissive
    reporters.”
  • To find statute information for a
    particular State, go to
    http://www.childwelfare.gov/
    systemwide/laws_policies/state/
    index.cfm 

SOURCE: https://www.childwelfare.gov/systemwide/laws_policies/statutes/manda.pdf#Page=2&view=Fit

Please click this link because it’s very informational.  It’s from childwelfare.gov:

Identification of Child Abuse & Neglect

Next, what do you actually “do” if you suspect abuse?

Children need us to be their voice.  We can’t be afraid to be wrong.  It’s all right to be wrong.  I would far rather call and be wrong and hurt the adult’s feelings than hold back and do nothing because “I don’t know what happened that day.”  And if you’re the one who needs help… if you’re afraid you might harm a child you love… please ask for help.  Beg for help until you get it.  Please.

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… Recovering in a manner that is nothing short of a miracle.  And SHE is the focus of this blog entry.  Issy is important.  Issy is special.  Issy is the one that needs support, along with her father.  Issy is the one that deserves prayers.

In a situation that could have already ended tragically, this sweet girl is showing strength and improvement day by day.  Her father, Matt Stapleton, posted on the Team Issy Facebook page on Sunday with this amazing, incredible update:

…On Friday, after three days in the ICU, she was still unresponsive and had confirmed brain damage. After not seeing any changes in her condition, it was decided Friday evening to remove Isabelle from the ventilator. She responded by breathing on her own for the rest of the evening. The following morning, she awoke from her four day “coma-like” state asking questions, making requests, and quite incredibly, showing signs of the amazing young woman she is. For three days, she was hooked up to machines and showed very little progress. Fast forward 24 hours and we are out of the critical unit, completely independent, and beginning discussions about the extent of her brain damage. She has smiled and is now walking and talking. It is nothing short of a miracle. While she still has several obstacles to overcome, we are extremely hopeful with this unbelievable turn of events. … [go to FB to see the full update]

If you’ve watched the news or are in the Autism Community then you’re likely aware of who Issy Stapleton and her father are.  Issy is a beautiful 14 year old autistic girl that was in a coma for several days when it was unclear if she would survive or come out of the coma.  The coma is due to carbon monoxide poisoning .  Issy has suffered brain damage due to the carbon monoxide poisoning which unfortunately was not an accident, but a murder-suicide attempt by her own mother.  Issy still has a long road ahead of her, but luckily she has a loving father and family who are there with her every step of the way.  A father who adores her.  Lissy is resilient.  She’s SMILING in spite of what she’s been through.  She’s responsive.  She has been able to make requests and show her personality when Friday, she was in an unresponsive coma.  She’s out of the critical care unit as of Monday, September 9th 2013.  This is joyous news and truly miraculous.

Lissy is alive and smiling.  She’s alive and her family is happy that she’s alive.

WARNING:  What I talk about next may be a trigger for some because it does involve discussing attempted child murder.

I also feel like I need to address the fact that the woman that gave birth to her recovered well enough from her own carbon monoxide poisoning to be in jail on charges of attempted murder, being held without bail.  It pains me to even admit that I occasionally used to read her blog.  I won’t share the link because I don’t believe she deserves any further attention, and there’s absolutely no excuse, explanation, understanding for what she did.  There’s no one to blame except for her.   Period, full stop, nothing anyone can say to get me to empathize with her.  This is one topic that I AM closed minded about.  If you believe differently, I honest to God don’t want to hear it.

There has been discussion around the internet about Safe Haven laws for situations such as Lissy’s except for the fact that only one of her parents to end both her daughter’s and her own life as a permanent solution to a temporary problem.  She did this on her own… Matt Stapleton by all reports was surprised at his wife’s actions, concerned by a message she had left him that prompted him to go search for them.  This is a woman whose husband is a school principal and knows the school system.  Do I even need to point out the implications of putting a special needs autistic child into the state foster system at 14 years old?

When you have two parents in the home and one is feeling “battle fatigued” and symptoms of post traumatic stress disorder (oh, have I been there) then communication with your spouse and others in your support network is imperative. SHE HAD THAT.  She didn’t call 911.  She didn’t call a suicide hotline.  She didn’t call her psychiatrist.  And rather than viewing this as the system failing her with a temporary setback, she stewed on the those issues for a couple of days and she deliberately chose her actions.  Actions which clearly stated,

“My way or no way at all.”

No, I can not identify with that at all.  I can not empathize with that at all.  Not when it comes to parenting, and not when it comes to parenting and advocating for an autistic child.

And so Issy deserves to be known for how amazing she is.  Not for the burden her mother had to carry in her advocacy.  Issy deserves to be known for her strength and her smiles and her love for her family.  She deserves to have it known that her father has been fighting for her since he found her, that he’s been by her side praying and asking for prayers from everyone he knows and those he doesn’t.  I wonder if he realizes just how many lives his daughter has touched.

I pray every day that she continues to improve and gain strength.  I pray that whatever brain damage she has, it’s minimal.  I pray that her community rallies around her and her father.  Amen.

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