Archive for the ‘advocate’ Category


WARNING: To teen or adult autistic individuals, I’d like to take care in warning you that this blog entry could be triggering to you.  I personally will not discuss ABA in detail because due to how our doctor referred us and who we were referred to, we chose not to pursue ABA therapies for our daughter.  That means I can’t speak to this from personal experience from a parenting standpoint nor on behalf of my daughter.  However, the link titled “ABA” will be discussing ABA therapies in some detail, so if you feel it will trigger trauma for you, please consider refraining from clicking the “ABA – Unstrange Mind link.

This link I’m about to share from Unstrange Mind by Sparrow Rose is probably one of the best and most comprehensive laymen’s explanations of why ABA therapy in its original intended form is, at best, misguided and at worst terribly abusive.  It also explains the difference between “different types of ABA” considering that in order to get an appropriately non-abusive therapy covered it must be classified as ABA for insurance purposes.

Most importantly, it explains to every loving, caring parent who takes their child to ABA and might fear that they’re being accused of abusing their child by allowing abuse through ABA what to look for in the therapist and the therapy their child is attending.  It talks about intent in bringing their children to ABA.

“ABA” | Unstrange Mind (click here).

This blog entry is a gift and ought to be read by every self-proclaimed Autism specialist, advocate, pediatrician, ABA therapist, teacher, special educator, parent, Autism advocacy agency, and anyone else whose lives might ever be touched by Autism or ABA.

This is so important.  When adult autistics speak, please listen.

 

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microwave dangerWe packed up the baby factory years ago.  My youngest is 9 years old going on 40.  I’m turning 40 next month.  Well… 30 with ten years experience.  Seeing babies and pregnant women often makes me want to have more of my own.  I miss the newborn and infant stages… all of the littleness stages.The practicality of it is obvious, I suppose, but the emotions of it aren’t gone so I need a new rundown of why it’s probably good that we’re done having babies.

  1. I’m not a spring chicken
  2. We can come and go from the house without having to pack up lots and lots of gear
  3. The children are mostly self-sufficient and independent
  4. I wouldn’t have to deal with morning sickness that lasts 24/7
  5. We don’t have to think up cutesy ways of telling people that “we” are pregnant
  6. We don’t have to decide if we want to wait or find out the sex of a baby and then answer endless questions about it
  7. I won’t have to hear old wives tales about how I’m carrying, eating, looking
  8. No more diaper changing or spit up unless I’m babysitting for someone else
  9. I won’t have to answer personal questions about pregnancy or jokes about how I got that way
  10. We don’t need to see people’s facial expressions when they hear name considerations that they dislike
  11. We don’t need to worry about agreeing on a name together for a brand new human
  12. We won’t have to rearrange bedrooms for a crib
  13. We won’t have to tip-toe around nap times or worry about getting a baby used to a noisy house
  14. We won’t have to answer questions on what style of parenting we’re going to use
  15. I won’t have to take 6 weeks maternity leave from work and then get so emotional that I have to quit my job to stay home because I just can’t leave my baby
  16. I can look at other pregnant women and feel a little jealous or envious, but the feeling passes
  17. I don’t have to argue for or against natural birth or epidurals or c-sections or hospital birth or home birth or magic wands
  18. I don’t have to share my opinion on “push presents”
  19. I can hold other babies and spend time with toddlers, but I get to go home with my own daughters
  20. I get to keep being the cool auntie to new babies
  21. I don’t have to worry about SIDS unless a newborn is sleeping over my house
  22. I baby-talk at the cats
  23. Toilet training is over
  24. We no longer watch Blue’s Clues and Dora the Explorer on endless loops
  25. I can no longer remember all of the names of each Wiggle
  26. I don’t have to worry about whether I have to defend breastfeeding or bottle feeding
  27. I don’t have to worry about whether I have to defend cloth diapering or disposable diapering
  28. Regarding 17, 18, 26 and 27… I don’t mind my brain to mouth filter quite as much as I used to in my old-ish age
  29. I really need the coffee and pregnancy would hinder that, and more children would increase my need for it
  30. I have a chronic pain disorder and let’s face it, pregnancy would exacerbate my Fibromyalgia
  31. Babies are expensive
  32. We would need all new baby gear and clothes
  33. We really need a new dishwasher
  34. And a new heater
  35. And a new hot water boiler
  36. We could also use some new windows
  37. Maybe some curtains too
  38. I’d also love a new living room set
  39. We also need to get the girls some new bedroom furniture
  40. And I really enjoy being able to get my hair done every few months
  41. We also enjoy buying groceries
  42. And affording coffee
  43. My memory is not what it used to be, and a new baby could end up on the middle school bus while my middle schooler is happily sleeping in a crib
  44. I need far more sleep than a newborn would give me
  45. Or a toddler for that matter
  46. I recently had a dream that I was still in high school and left my baby in the gymnasium because the bell rang and it was lunch time but when I went back the baby was gone
  47. My daughters are perfectly happy with our family dynamic
  48. My husband is perfectly happy with our family dynamic
  49. I’m pretty sure the cats are somewhat, sort of, maybe happy with our family dynamic
  50. My daughters are old enough to do chores and a new baby isn’t
  51. I threw away all of my old maternity clothes
  52. It would be really difficult pushing a stroller and using my cane at the same time
  53. Kitty litter is bad for pregnant women and babies
  54. The microwave oven at my work place… just saying
  55. I have already achieved perfection in the three daughters that I have

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My Sweet Girl doesn’t like talking on the phone.  Clarifying:  the boring land line which all you can do with is talk on it; the android, which you could speak into in order to have conversations except for the fact that she hates doing that.  She doesn’t like pleasantries, conversations of a fun or serious nature, and doesn’t “get” what’s so great about the entire vocalizing conversations thing.

She much prefers my android and the fun things the phone actually does.  Youtube, Kindle books, Angry Birds.  She looks forward to having her own one day so that she can have Youtube, Kindle books, and Angry Birds and text all of the friends and family that she doesn’t want to speak with.

During the second PPT of the school year I asked her team to build into the social therapies “telephone speaking skills.”  At 11 years old she doesn’t know, or care to know, how to make a phone call on the house phone or the android (or even her dad’s basic phone).  She doesn’t know, or care to know, how to answer any of the phones.  She does know how to view a text I’ve received.  She knows how to open any app that interests her.  She knows how to open up Chrome and do an internet search for My Little Ponies and Frozen and Angel Cat Sugar.  She knows how to do all of these things on my Kindle too.

I wasn’t sure how the social therapy regarding the phone skills was working because she’s still resistant to using the phone, and although I encourage her to take calls that come in for her, I don’t force her to do more than listen to the other person and be polite.  I also don’t force her to make a phone call, although I will have her listen to me make a phone call and watch what I do.  Her response every time is,

“I do not like the phone. I do not… know.”

I get it.  I do.  She has nonverbal learning disorder, and she has some anxiety regarding phone usage because, I’m guessing, telephone conversations generally don’t have an easily identifiable script.  There isn’t an expected beginning, middle, or end.  People say and ask unexpected things and since it’s not face to face, responding more quickly (as opposed to taking some time to respond) feels more urgent and anxiety inducing.

It’s ok.  But it’s still important that she knows how to do these things.  I want her to know how in case she NEEDS to make a call or respond to a call.  Emergencies could happen.  She needs to know emergency contact numbers too, but that’s been a very long difficult lesson that worries her.  We usually have a medical alert bracelet for her with ICE info on it, but the last one broke so it’s time to get a new one.  It helped her feel secure.

So you can imagine my surprise when my youngest princess called me today (as requested) with a grocery list I asked her to help me with.  I asked her if the Sweet Girl had helped make the list, offered suggestions, or anything.  She said no and then forced her sister on the phone.

I fully expected Sweet Girl to drop the phone and walk away.  She didn’t.  She didn’t because with forceful determination, my youngest daughter told her to speak up and tell Mom what she wanted for groceries.  I said “Hello” and asked her what she’d like when I went shopping after work.

Suddenly…

“Ummm… yes.  Tomato.”

“Ok. Tomato… sauce?”

“Yes.  But red soup.  Gramma calls it red soup.  It is red.”

“Great idea!”

“Mmm hmmm, yes.  Sauce.  Your sauce is better.  You need enough.”

“I need enough cans to make sauce AND soup?”

“Yes, you do.”

“Good idea.  What’s next?”

“I need hummus chips.  They are healthy.  I do not like hummus.  Hummus chips are good.”

“Uh, yeah.”

“I need black bean chips.  I do not like black beans.  I do not like texture.  Black bean hummus chips are good.”

“On the list.  Thanks, honey.”

“Chocolate pretzels… uhhh… Special K.  They have the chocolate pretzels I like.”

“Ok, thank you.  Anything else?”

“Yes. Apples.  Strawberries are good.  I do not like bananas.  Anna and Daddy like bananas, I do not like them.  You should buy them.”

“Great, I almost forgot those on the list.”

“Mmm hmmm, yes.  My pretzels, the ones I like.”

“Mustard?”

“Yes, mustard pretzels.”

“Well, should we get veggies? I think those would be healthy.”

“Yes, get veggies.”

I fully expected her to remind me that she doesn’t eat veggies or meat, only fruit and carbs and cheese, so this surprised me.  :-)

“Oh! Well what veggies would you like?”

“Rhubarb.  I miss rhu…rhubarb.  I like cauliflower.  You have to get cheesy, um, the giant one.”

“Sure! We did run out of the cauliflower.”

“We ran out of rhubarb.  Last summer.”

“That too, I hope I can find it.”

“Hmmm, yes.  You should get my fruit bars.  They are frozen.  I like strawberry.  I like lemon.  I want coconut.”

“But the coconut has milk in it.”

“Yes, you say that.  I like strawberry.”

“Do you miss yogurt?”

“I like yogurt.  Get one with chocolate.”

“You’re such a big help on this list honey.”

“Yes.  I need allergy medicine.  And nut clust… clusters.  I runned out of Lactaid.  I need chocolate Chex.”

“We ran out of a lot.  Are you hungry?”

“I don’t know.”

“Do you think the list is done?”

…..

…..

“Hi Mommy, Gracie just dropped the phone.”

 

Oh! My! Gosh! That girl kept me on the phone for 15 minutes! I complimented her when I got home from grocery shopping, and made sure she saw the healthy foods she added to the list.  She may not eat the majority of the food she PUT on that list, but she created a grocery list! Over the phone! For 15 minutes!

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

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

Here.

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“What about the difficult moments”

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

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

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

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

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

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

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

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

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

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

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

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

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

“Okay! Just checking!”

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

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

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

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

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

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

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

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

And there you go.

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Using All The Spoons

Using All The Spoons

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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