Reflections of and on a probably Asperger's parent parenting an Asperger's kid (or 2)!

dragon pups

dragon pups

Monday, December 31, 2012

clearing myself for 2012

So I am going to try to empty my head of fear so I can make room for the hope...

My husband's work is directly involved with the Fiscal Cliff, so there has been little upbeat conversation around our parts in weeks...

I know that the upcoming year will include testing for my youngest's hearing & speech - maybe even more fights (with insurance, but maybe school too if she can't read and pass the standardized tests - they'll MAKE her come back to school).  I have not documented as much about our struggles with/ for her.  She is "NT" - BUT she has some slight hearing loss - didn't pass her hearing test until she was 6 months old - they told me it was because her ear canals are so small and were full of vernix.  So at 3, when I was concerned about speech, we went an Audiologist - who told me she had Auditory Processing Disorder, but that it couldn't be officially diagnosed until age 6 (just like all the ASD labels).  She went to school for about a year to receive speech services, but we pulled her out just after we did my son (to homeschool) because of the big political fight we went through with/ for him.  The speech therapist at the school told me her problem was an over sensitive gag reflex, it kept her from making guttural sounds.  Sounded in line with all the sensory issues her brother has, so I didn't think twice about it.  She has consonant sounds now IF she concentrates and slows down, but not in conversation.  I continue to be VERY concerned about the vowel sounds - she clearly just does not hear them in isolation...  We had an medical speech eval just this month (about to turn 3) so that it would be "evidence" for the audiologist that something is "not right".  This therapist seems pretty outraged by the not clearing her ears earlier as well as by the idea that "gagging" is her problem.  But this speech therapist is also moving in 3 weeks, so I don't know how it will play out.  I did get to hear an audiologist speak to a local ASD parent group - and he was ADAMANT that only audiologists can diagnose Auditory Processing Disorder (APD), and that it CAN be done earlier than 6.  I read a LONG book about it from the library.  It was VERY detailed and I don't think I caught all of it.  Guess I should read it again...  I am just anxious about what could be more fighting with the insurance companies about what treatments are funded and so forth.  I am VERY VERY concerned about her reading - and I am fearful that she will NOT pass the standardized testing this spring and the schools will put me on "probation" for a year.  But worrying doesn't teach her...

I am thinking we need to look VERY hard into vision testing for my eldest's - we are seeing some clear patterns come up in his reluctance to read.  He has read above grade level up to thus point - WELL above grade level.  But I have always said that I think he is photographic memorizing all this/ these words. - like every word is a logo.  There is plenty of brain-based-learning research that show that we all learn to read that way (that letter passed around the internet with just the first and last letters in place & the rest jumbled...)  He was able to read 3rd grade level books (lines spaced out) out loud to me last year, but when we moved to the 4th & 5th grade level (lines close together) - he protested MIGHTILY.  So with nearly a year of trying to up his reading - he is now loudly protesting that he cannot read at all.  I have talked to him a couple times about it, but since I can't get him to an eye doc I haven't really pushed him about it.  I was not entirely sure that he could get his face in that binocular think that he'd need to look into.  He did say yes when I asked him if the letters "move around on the page" - I have heard that description in other ASD resources.  I know that I personally have the problem that my eyes are not "level" in my head and I see "ghost" images of letters when my eyes get tired.  Maybe we need to look into reading glasses or vision therapy?  I don't even know what vision therapy involves, but I am betting it is not covered by insurance...

That kid also had a speech eval recently.  The speech therapist was concerned that he was getting nodes on his vocal chords from the way he was screaming.  Her assessment is that I need to get him to an ENT to visually check his vocal chords, that the way he talks is "odd" and stresses his vocal chords, but speech therapy would be no use right now because the sensory stuff is so off he can't hear himself making the noises.  She agreed that maybe voice lessons (singing or acting) could help him when he gets older...

I am anxious about what all this means financially and emotionally, for all of us...  I am aware that part of the reason he struggled in school was because I was deeply entrenched in a political fight and that stress affected him.  I get nauseous just thinking about the potential arguing... and I NEED to not borrow trouble!

I am particularly worried about the continuing fallout of the bullying that happened at school.  Here is a post from Facebook yesterday:
Just to be sure I document this... we had a VERY sad exchange with JT this past week...

We were tickle "fighting" when his sister got frustrated at him and shoved him. I reminded her that words are the most powerful resource we have and she needs to communicate with her words, not her body. (she is supposedly NT)

JT immediately and loudly burst into tears and screamed, "that is not true!!! I asked them to stop and they didn't!!!" I asked him if he was referring to school, and he said yes. I tried to explain that I thought the adults at school were NOT good listeners and were NOT doing their job of helping children be nice to one another. he then cried that he was a bad person for saying mean things back to the kids that were mean to him (which we did tell him last year, and IS true - even if his behavior was understandable). He agreed to "write letters of apology" for me to take to the school since I am not sure they will let him visit...

I think that even when we KNOW, we underestimate how much bullying affects a child... It has been over 1 year since we removed him from school...

I feel like I should contact the school leadership and let them know  what they have wrought!  But I am also very afraid to ever go there again.  And I do not believe in my heart that it will make a difference for the children who are still there...  Sadly I think we will just be swept under the rug, again. I would LOVE to offer my son closure on this - to let him go back to school n person and offer those apologies, but I do NOT think they will let him.  Or they will try to use it to force him to come back...

This year should also see some changing politics at my work.  There is a large potential leadership change or shift coming in this year.  I just feel like there are lots of loose ends, lots of unattached powers, waiting to anchor themselves.  I am anxious about how the politics above me will affect me, but also about whether I will be able to navigate the political winds effectively...  I have a habit if struggling with that.  I am wondering If I will "grow" professionally, and if I should be growing professionally...  the whole stay-at-home-mother, home-schooling, can-i-get-enough-therapy guilt is undermining what my heart feels to be a "correct" direction for me to move in.  I think that being a better experiential educator will enable me to be a better mother and teacher for my kids too...

I am also a little disappointed in myself. I want to "grow"/ strengthen my intuitive gifts.  I feel like I received a... message? reprimand?... about faith and doubt.  I am trying to sort through my head Truths I had thought resolved when I was a teen.  I guess that it would be time to revisit them if it's been that long...  I am able to legitimate when my son seems to manifest a "psychic moment" but I am just not sure I can do it for myself.  I have to say the Dec 21st thing has thrown me a curve.  My ASD kiddo had a weeping lesion on his face for 10 days prior (the whole mall visit thing) - and it resolved itself on the 21st...  One psychic I follow said she felt an up-welling of good energy that day.  I didn't...  

But the whole point of the Mayan Calendar is that the world started over, that we have reached a New Age of.... something.  

I am hoping that the new year is a new phase, a new place to be awesome, a new way of being for us, a BETTER way of being.  Unfortunately I am not sure what that looks like.  I am not "building the vision" in my head... I am trying to just be open to what manifests.

So here's to a GREAT manifestation!!!! or seven... ;)

Sunday, December 30, 2012

Just on life at the moment...

I am sure you are VERY little interested, but I feel the need to summarize out loud so that I can get a grip on "things"...

I seem to have absolutely FRIED my Aspie 8 yo with a trip to the mall last week (week before?) - we have been over a week "recovering"... he did AWESOME at the mall (hard enough a BIG mall in full Christmas regalia for 4.5 hours, but also under the supervision of 2 other moms - I was busy with Girl Scouts), but DUDE!!!!! As soon as we got in the car he THRASHED for the 1.5 hour ride home, and then he was naked with in .00005 seconds of walking in the door, bounced on the trampoline 2 hours straight, and then took 2 showers that night.  The next day he had 4 showers before 10 am - so we went to the pool for 4.5 hours (and somehow managed to visit 12 places to learn the concept a "dozen" that day).  He had a sizable cold sore that morning - it wept for about 5 more days.  Today makes day 8 and it is starting to dry out/ up.  We'll see... he has had weeks of weeping lesions on his face in the past during the holiday season...  For 2 or 3 nights after that, consecutively, he stayed up ALL NIGHT  watching TV... and I didn't really see naps during the day...  I did hear the trampoline a couple times, but not for a long period.  Yesterday we made the trek into DC to visit daddy at the office and deliver some Christmas/ Holiday Cheer (200 chocolate covered marshmallows on sticks we made before the mall outing - the kids crushed graham crackers with a rolling pin to roll the "pops" in.  It was really kinda epic in it's own way...)  Today, we spent most of the day in the car or in the library (it is Girl Scout meeting day).  He seems to have done OK,  but has a good amount of energy - expressed by beating furniture with wrapping paper tubes or rulers.  

So one thing he did this past week-ish was a self-proposed/ directed science project: He discovered/ explored the ability of cardboard to hold water.  Specifically, I found an empty dog bone box in the shower SOAKING wet on the bottom with Angry Bird band aids all over the bottom of it.  Apparently he had tried to stop all the leaks with band aids.  Ingenious, BUT he apparently did not see that it was not effective... nearly the whole box of band aids was gone.  I quietly emptied what was left into the plain band aid box that is HIGH up on the cabinet and left the empty Angry Birds box on the counter.  He told one of my husband's co-workers yesterday that we were out of Angry Birds band aids ... so I am guessing he continued the experiment even though I had put his box in the trash.  (But HEY - at least he did it in the shower!! - the box has not yet begun to disintegrate, so the worst so far is the dog-biscuit-crumbs down the shower drain...)

My kids also argued with me about the validity of Sid the Science kid this week - about whether slime can be both a solid and a liquid (apparently on the show "the teacher said" that when you hold it in your hand it is solid and when it drips to the floor and spreads out it is a liquid...)  I tried to explain that "scientific thinking" says that other scientists have to agree with Teacher Suzy - and that I would want to hear that from other scientists before I agree...

We have talked about the shootings some this week. I am a little afraid because I have always been so open about his diagnosis, I don't want him (or me) to have to deal with unexpected/ ridiculous associations between the shooter's Asperger-ness and his.  Part of it is he heard about it on the radio news.  Part of it is that we have been in several public places that have so helpfully been showing CNN and the unending coverage (like Qdoba's at lunch today - and the doctor's office - get to that in a minute).  We saw them showing pictures of the children buried today, and my daughter blurts out, "That girl looks like me, sorta!" - which is true since all blonde 6 year-olds look like blonde 6 year-olds.  I quietly asked them why they thought those children's photos were on TV, and my son quietly responded, "because of the shooter".  We did not talk further about it.  My daughter's Girl Scout troop made trefoils (per request of the Connecticut Council) to send to the families of victims, so we had discussed that.  He did look at the cashier at the dollar store and ask her if she had heard about the "angry man" who had "gone to a school and killed children".  She just said yes.  We were buying toys for Toys for Tots.  There is a collection box at our therapy building.  And we all know that Santa is VERY busy and so we need to get extra toys for the elves to wrap & pack for him... (we actually went to see Rise of the Guardians at Thanksgiving, and we know that the poor Yeti had to repaint all those toys since they are the wrong color and got behind).

He has been DRAWING this week-ish!!!!! BIG DEAL for my fine motor reluctant kid!!!!  It is all stick figures holding light sabers and animals/ creatures.  The sabers are colored of course (the people are not) according to the requirements set forth by the Jedi Path book.  What is interesting is that while many of the figures have very specific head shapes (symmetrical bumps or "limbs" - aliens?) - NONE of then have faces...  not that any of his people figures ever have...  but there are also animals on these drawings, and they definitely have eyes and TEETH...  Should I be getting him tested for that disorder about "face-blindness"?  But he ALWAYS remembers people we have met, even briefly...  Lack of attention to detail?  Attention to a different detail (light sabers)?  I have to say they are a substantial improvement over previous attempts.  He has also VERY ACCURATELY (in comparison to himself) created renderings of Angry Birds.  There has been LOTS of story telling about the Star Wars Plants vs. Zombies version he "is going to make"... and LOTS of singing of the Plants vs. Zombies music, over and over and over...  He has apparently been playing my character since i mastered the game 2x and have access to more levels than he does...

He had a speech eval this (?) week... the speech therapist had heard him protesting to the OT and said she thought he needed to be checked.  Her findings are that he stresses his voice.  I should take him to an ENT to be sure that he is not disfiguring his vocal cords, but that even if he is, there is not much to do about it right now since his "sensory processing" is so off that he "speaks in a monotone" and cannot hear himself change pitch.  Hopefully as he ages he will be able to hear himself and we can address the same skills with voice or acting lessons instead of therapy... maybe he will feel less broken if we do it that way?

On another front, my daughter has been DISGUSTINGLY jealous.  I try to be sympathetic - she is younger, he gets all this time with therapy, I probably talk to him more because I am talking him through his day all the time, but I have also made a BIG effort to give her lots of "her only" activities in the past couple months. She had a speech eval this week.  It is VERY VERY likely that we are looking to get an Auditory Processing Disorder diagnosis... her understood speech is significantly higher than her spoken speech, but her articulation is "below average".  The therapist says that "she repeats directions back all most all the time - an indication of processing issues"... um... or else she sees that ALL THE TIME with her older sibling and doesn't know not to?  Or we have been unconsciously requiring the same behavior of her that we do of him? (Repeat the directions to me so I KNOW you get it...)  Either way - she is NO DUMMY... she plays social games ALL THE TIME, a manipulator (especially in comparison to him).  We have had LOTS of quiet and loud "talks" about sneaking (doing something after you've been told not to while no one is looking), and out right lying! (which is the FINAL STRAW for me - the uncrossable line!  I have a LOT of trouble respecting a person who outright lies, and in light of her being my DAUGHTER I think it is VERY VERY VERY important that I be able to trust her implicitly and that she be able to tell me ANYTHING!  As I have grown older and built more strong friendships, it is appalling how many women have been victims of molestation...  For her safety, I NEED her to be honest with me and I NEED to believe her!)  I feel like I have been VERY consistent with saying that every person is different and needs different things every time jealousy rears it's ugly head... reminding her that she is HER, not someone else, and why would I treat her like someone she is not?!  I have outright asked her if she interrupts me talking to her brother because she is afraid he is getting more time.  She says yes, but then does it again, even though we go through the list of all the things she does that he doesn't... what is "easy" for her that isn't for him... what her "talents" are and how they are different that any one else...  maybe by getting her speech therapy she will feel "even"... but the jealousy thing is REALLY pissing me off!  She even gets mad at him when he "makes" her the "little sister" in their make believe play!! DUDE - SHE IS THE LITTLE SISTER!!  Guess we will keep working on it...

This morning she shut her hand in a screen door.  It latched with her fingers in it - scared the snot outta me.  And she was HURT, but then she got panicked that she had "squished her bones"!!!  But she could move it, and it didn't swell instantly, so we iced it, had x-rays a couple hours later, saw the doc this evening and were told that it is probably just fine.  Within 30 minutes of the incident she was singing to herself in the back seat of the car, so either she has dangerously high pain tolerance or it is OK.  Considering how... distinct... individual members of this family are - I am NOT ruling out the pain tolerance thing - but she was writing and coloring with it today - even grabbed her brother's shirt and pulled it - so she is probably fine.  we have to watch it for a week (IF there is fracture it could involve a growth plate, "so we want to be SURE it's OK").  It's the visits to Radiology and Doc that brought us to CNN...

My mother-in-law is not doing fabulous.  She was heavily affected by some strokes this summer.  It is VERY frustrating for every one involved - the family who has "lost" their mom, who is wearing itself out to provide her care, and on her part that she just cannot find what she wants to say...  Apparently it degenerates into name calling and unpleasantness often.  She was hospitalized the entire week of Thanksgiving... apparently the arteries in her legs have hardened/ been blocked.  There are a HOST of complications, and my father-in-law admitted that she had been hiding some of her medical conditions from him for years...  So we wait.  We try not to "fill up the schedule" so that we can be ready at a moment's notice for the inevitable, and then try to get down to visit (4 hr drive) as often as we can without increasing the burden (the feeling that we need to be entertained/ cared for).  My husband's work is driven by national politics, and it has been HEATED this year - so he is not in a position to go visit as often as everyone would like... and I am afraid that I sense unspoken resentments building.  Maybe I am over-reading things... Aspies are known to do that...

But - I also don't want to forgo opportunities for the kids, since we are homeschooling and they need to get out and be in organizations.  There is the Cub Scouts - which he has been protesting heavily, but he goes.  I have explained several times that I am NOT going to let him out of this one - scouting is a way of life, a promise of how to be, and it creates SO many opportunities when they are older!! Now that it is Pinewood Derby time (and the pack leader is actually helping them all build their cars at meetings this year - actually explaining what is gonna happen & needs to be done!) he seems to be more into it.  Part of it is that he's been asking me more questions about why he "can't" go back to school - and we have been trying to explain that the way he was treated was TOTALLY UNACCEPTABLE, and the way he responded (hitting) was unacceptable... I finally told him I just don't think it is safe there; I don't trust the grown-ups to pay attention.  One kid in our pack has a torn meniscus this month (8 weeks crutches, even more therapy) - assaulted from behind during PE class... yea, they are clearly making progress in creating a "safe, no-bullying" school!  After the garbage floating around with the shooting, I don't think I could EVER send him back!  They had already allowed the bullying to reach the point that he reacted violently - they had already been sure to paint him the "bad guy" - IN 1ST GRADE!!!!  

UPDATE: About 3 days after that conversation, he broke down during a conversation about the power of words.  i said something to the effect that words are out most powerful tools we have, that words are stronger than fighting.  My son instantly burst into tears, sobs, and yelling - "THAT'S NOT TRUE".  I asked him what he meant, and he said, "I told them to stop, and they didn't!  WORDS are NOT powerful!"  

So now, I worry and guilt some more.  How do I rebuild his faith in humanity?  How do I help him ways to be powerfully him?  I think he was only subjected to verbal insults... I PRAY that he was only subjected to verbal insults!  And yet the damage is so profound... It is more than a full calendar year since he left public school and we are still dealing with the impacts, finding out the details.  To his credit he was also so upset that he had been mean to his friends - that he had told them he hated them.  We agreed that he could write them all apologies... I want to go chew out the school administrators, but I don't know that it would help anyone.  They are not going to protect any other children either.

I am trying to grow my "career" as a "camp professional" - a challenge course facilitator.  My mother has generously helped to fund my participation in 2 conferences this winter.  It means that my children will need to visit with her while I am at them...  There has been substantial politicking where I work - and I seem to be losing at the moment - or at least not gaining ground.  Apparently my too-loud, call-it-as-I-see-it, gregariousness is not helping.  I worked at a school once where the principal left me to fry because she did not have the gonadular fortitude to face a parent - and I will NOT fry for someone else's lack of ability again!  I do everything I can, more than I should, but I will not take responsibility for problems I did not create.  And I really don't wish to be party to new problems made for me...  In all honesty I have spent the whole year in fear - this is my 5th year there... and so far in every previous job, the 5th year has proven the breaking point between my self and previous employers....  I get to feeling like I have given them plenty of time to listen and respect my experience - to "get to know me" and my abilities (start having faith in me) and they seem to reach the limits of their ability to "give me room to work".  I still believe in my heart that God led me to this place to work for a reason, but I am also starting to think that my foray into this profession may lead me to expand locales...  I SINCERELY hope not, because my direct co-workers are an AWESOME AWESOME team, we support each other SO MUCH, personally and professionally!  It is too good to describe - but I fear I will flub the higher politics...  I just keep waiting it out and praying I have done right.  My supervisor (I am SO SO SO THANKFUL) created an opportunity for me to try to play politics at the staff Christmas party, but I am always so afraid I went about it wrong... I guess that is typical Aspie too...

And then there is the Holiday itself... Christmas.  I really have not enjoyed a Christmas since I left home/ got married.  It just seems like there is SO much pressure - and in typical Aspie fashion I spent may years mourning the traditions I was no longer able to uphold (it fricking SNOWS here in the East!  I am used to SUNSHINE on Christmas day!)  My husband thankfully worked with me for years to establish our "OWN" traditions - and I think now that we have kids, we are "getting there" - but life has also been turned UPSIDE DOWN with the whole "autism thing" and is not what one typically envisions for "holiday success".  Don't get me wrong. I appreciate where we are!  I have been through the mourning process and actively seek to meet  my kids where they are, to celebrate what we CAN do!  But I also have the reality of Seasonal Effective Disorder and the ridiculous and frustrating pain of winter arthritis... in general it just sucks.  Of course a key worry of the season is frugality and expense.  We need to travel, but I don't pull a paycheck these months.  THANKFULLY our families help us through these lean times, but I suddenly realized that the issues isn't even the gifts (my going-to-be 6 year old asked for an AMERICAN GIRL DOLL!!! Yeah, right! - my son wants ALL the Star wars legos, of course - Aspie obsession) - it's all the OTHER stuff!   The walk-through lights, the drive-through lights, the 500 chocolate dipped marshmallows, the metro fare for 3 people to and from the office, the meals in the car/ on the road, the dress-up clothes, the annual ornaments, the travel expenses to see people we see once a year...  All these things are "part of the season".  I think the True power in Christmas is how it makes us all reach out to each other - how I can talk to my kids about buying a gift to GIVE to Toys for Tots, about how we can make paper snowflakes to decorate the therapy office, about how we can SHOW them all the "dutch" aunts and uncles who will provide them emotional stability as they age...  I do SO MUCH less that I remember doing as a kid, but I do NOT want to rob my children of these ties.  The nice answer is that we just need to spread it all out.  The reality is that people just don't make time for that kind of thing at other times of the year...

I am hoping that by "cleaning my mind" with all these words I will be able to actually sleep tonight and not have nightmares...
I keep reminding myself that the days will start getting longer again after tomorrow... 
It will give me more time to do laundry...

Speaking of the solstice tomorrow.. I have to tell you what my 8 year-old has said on that!  He saw on CNN today that the Mayan calendar predicted the end of the world this week, and he repeats the report, 
"The world is going to end this week?" - not really alarmed, but looking for comprehension,  
so I reassured him that the Mayan calendar is just starting over, specifically I said, 
"The Mayan calendar says that time starts over this week".  
"Really?!", he says, "Will we see dinosaurs!?" 
"No, that's not exactly what I meant.  Remember that the whole world starts over every day, the sun comes up again and we have a new day to make good decisions."  
"oh, yea.  And that picture of the Oreo on Facebook says that it is all going to be OK"

... I thought it was pretty inspired, but hey - it's just one more day...

Sunday, December 16, 2012

Early on the CT shootings

I know that my voice is small, that there are so many other, louder voices shrilling right now...

As well there should be - the mourning of the families who lost loved ones needs to be held sacred, and we all need to be "helping" their recovery in a strictly emotional sense - reaching out to them with prayer/ feeling/ collective consciousness and helping them carry their sorrow until they are strong again...

What we do NOT need to do is "help" the "healing" by fighting, arguing.  It is VERY VERY clear that there will be some serious very long term repercussions from this incident - and not just that we have been robbed of some of our most valuable resources - children.  LOTS of fear from this incident is still stirring - widely.  I have read of Autistic adults that fear public retribution, I have read of parents legitimately afraid that violence will be so largely identified with autism that all autistic kids will be restrained "for public safety".  I have read other autism moms who see posts declaring Hitler's social cleansing correct and now needed.  While all these things are possible, my gut feeling is that we will not see that kind of behavior widely.

But I am no fool.  There are MANY people who invite hatred to rule their lives, who make all their decisions from a place of fear, and they share that fear with others.  I have been offered prejudice I did not think existed.  The specific target changes, but the acts of hatred still go on.

My concerns are that the ripples of this act will be VERY wide, through time and space.  And not just in a social sense, but in long-term legal, logistical issues.  One blogger posted that the schools called parents today to let them know that armed policemen will be at every school tomorrow.  What does a 7 year old build out of a reality where they are surrounded by armed guards at school, but "unprotected" at grocery stores and parks?  It sounds like the shooter was known to the staff (a family member of a staff person).  Will denying access to schools help?  What about those who fight for cameras in the classroom because their child is abused - parents are already fighting for their right to even observe in the classroom.  Will the schools be given total free-reign control within their walls?  Will I have to check my child in and out like a library book? Will they come "fine" me if I don't meet the "due date" or "use requirements"?

My concern is that the passionate desire to "fix" and prevent will lead to choices that have very unpleasant unintended consequences.  And do NOT preach to me about how these murders were consequence enough.  I was 3 blocks from the capitol on 9-11 - I KNOW terror and loss.  We keep being "blown away" figuratively and literally because we see people commit UNFATHOMABLE acts.

I think this whole points to a MUCH LARGER underlying issue/ concern/ dynamic: What is appropriate violence?

Here's a Facebook post I made earlier today:

The whole thing just BEGS more open conversations about violence and what is acceptable in children.  Are we looking at history saying "there were less psycho paths"? And if we believe that - then WHY?  What were they doing that we are not?  Butchering animals in their yards to eat? Burying their own dead on the farm? Seeing family members maimed in freak accidents with everyday farming implements? Doing the doctoring themselves?  ARE we trying too hard to protect children from even having knowledge of violence?  I am guilty of that too... I haven't even spoken to my children - we are homeschooling, they are not "threatened" (ha).  We know boys play war & fighting - should we be letting them?!  Would that help them see how much it really DOES hurt?  It's terrifying how every generation of Americans (and Western civilization) has had a global war in every generation... it's like clock work : Rev war (1770's), 1812, Civ War (1865), WWI (1914), WWII (1945), Vietnam (1970's), Iraq (1990's) - every 30 - 40 years.... genealogists consider 30 years a new generation...

It's a point I have made to every history class I have ever taught: How tragic that we have to teach ourselves what horror looks like again...

I will say what I have often said to people: that they do NOT understand what it means to physically hurt.  I CAN NOT watch scenes in movies where they torture or maim people, even replays on sporting events where they show the injury occurring.   I have taken LOTS of being made fun of for that.  But I CAN NOT because I know how it feels.  I have watched as my own knee cap moved to the back of my leg.  IT HURTS - A FUCKING LOT.  I saw my dog die when I was 9.  Most of my friends had never had an injury or been to a funeral before high school.  The only difference I could see was that I had experienced pain, they had not.

"It's all fun and games until someone loses an eye" - but people don't lose eyes anymore - those are just rhetoric.  A little bit of research into the past shows incredible injury.  Did you know that Robert E. Lee's daughter was blind in one eye?... because she feel on a knitting needle and poked her eye out.  Did you know that Juliette Gordon Low (founder of Girl Scouts) was deaf in one ear?... because a grain of rice at her wedding fell into it and in removing it her eardrum was punctured.  Did you know that my great grandfather had no thumb?... he lost it in a machine during the Great Depression and had to find a new means of work to support his family.   Did you know that my great great grandfather was paraplegic? ... he was hit by a train on his way to a house call - the only doctor in the entire county.  Taking a look at REAL people shows us how many of us live with injuries... but they still seem taboo/ hidden, unspeakable.  Is this what our returning wounded warriors are running into?

Maybe we are too busy padding playgrounds?  Maybe we are too busy moderating siblings?  I read an account of frontier life (late 1800's, New Mexico) that narrated a VERY interesting incident.  She talked about how the ONLY child she had to "play" with was her brother (though they mostly worked) - and that for MANY of the frontier families children might never encounter "age-group peers".  In one particular story she mentioned a family who were blessed with only 1 surviving child.  Another family came over (passed through), with a close in age child (I am remembering they were nearly 7 years old - she mentioned how novel it was to have 2 kids so close in age together in the same place at the same time).  She describes how the 2 boys circled in the yard for several minutes, and then ran at each other full speed and walloped the snot out of each other.  When they wore themselves out they became fast friends for the remainder of the visit.  She said that only one adult even suggested intervening, and was told to "let them work it out" - and the rest just observed.  An anomalous incident?  Maybe.  But it was clearly "common wisdom" to let them establish their pecking order physically. 

DO NOT MISS UNDERSTAND!!!! I am totally against bullying, against school yard violence.  I am no idiot and know that my child would end up with the brunt of it, as I did, as my brother did, because we are "awkward" and "annoying" and "invite" that kind of treatment by repeating words/ songs, using complicated vocabulary and erratic movements (stimming).  But I can also tell you that as a SUBSTITUTE teacher I have observed harassment on the playground that translates into classroom behavior, and noted it to teachers and administrators, but they refuse to look.  Instead of mediating, teaching acceptable alternatives, facilitating the underlying dynamic, regulating the expression - the answer is TOTAL DENIAL.  The violence is simply denied/ ignored.  It is not "tolerated" so it does not "exist" - 'cuz if it DID exist, then we'd have to punish it drastically to "nip it in the bud".

I don't know that I am offering an "answer" or a "solution" or a "course of action"... I am more talking through the associated material, seeking to find some kind of connection at the base, to keep us looking for the roots of the problems rather than putting on more ineffective band-aids.  I imagine that the answer lies somewhere in the middle, in moderation, in balance - just like everything else.

And it may not matter at all what I think...

Sunday, December 9, 2012

On Meditation

So, about a month ago I went to a seminar on meditation at the Smithsonian.  I Am not sure what I expected to happen, but I knew I was seeking some "thing" and needed to go to this event.

Before the event even started I had a rather interesting experience just getting off the metro and crossing the Mall.  I walked into an Autism Speaks walk.  I had seen some sorority girls on the train (a gaggle of them) and they exited with me - and I saw them go man a both of games.  As I walked closer to the center of the event, I was overwhelmed with emotion, to the point of tears sliding down my face.  I stood in the middle a moment, and then went to look at the booths.  I noticed organizations I didn't know about in my area - therapy places I would have latched on to 2 years ago.  The funny thing was, that I couldn't even name the strong emotion I was feeling.   I almost wanted to just thank people for caring so much to get together, but then I had this undertone of coming at it from the wrong angle, like there was passion to be heard, but that the forum (?) wasn't quite "right".  I noticed all the families/  teams in their colored T-shirts, identifying a child they supported, the one they wanted to heal.  I kept thinking about overwhelming numbers of people. (Know that I am a born performer and do NOT have crowd anxiety).  So, I just stood there in the middle of this event, crying, and .... nothing.  No one spoke to me, no one looked at me.... I almost felt invisible.  I have almost never had that feeling before - I am pretty flamboyant.

And so, I left and went to my class.  As soon as I turned the corner from the gathering - the intensity left me, the "pressure"/ "sensation"/ whatever-it-was just dissipated and I felt "normal".

I have a "gut feeling" theory about what happened, but I am not sure I want to put it in words- yet.

So The seminar was informative, and I enjoyed it.  I knew that I was seeking some kind of link with our journey with Autism and whatever meditation is/ does, but I did not know what I was looking for, what the connection would be.  I think I will need to do some more mediating and research to see it clearly.  This particular seminar had a great emphasis on brain mapping and brain function with meditation - which DOES have strong connections.  At the very end, the instructor talked about a study that looked at brain imaging while decision making, and his point was that meditators make wiser decisions (it was a money offer thing) - but an audience member brought up that the actions of the non-meditators were a natural part of the bartering process...a form of communication if you will...  In the context of how he explained the study, it was as if the meditators were able to choose to forgo the social bantering in light of the end result (getting a little money gift)... I am compelled to consider then how that works with the diagnostic criteria of "social awkwardness" - are we saying that it is ok to choose to not follow social conventions, but if you are unaware of them to begin with you have a problem?  

I think this is an extension of the communication argument   How do I know or believe that there is conscious thought when I cannot communicate with it, "touch" it?  We seek "signs" of communcation all the time - the person in a coma who can lift a finger when we speak, or the dog who goes to the door when we say "outside", or the object in the drawer that wasn't there before we prayed for it... how about the look from your husband showing he will get the diaper, or the hug from your mom that shows she really can't stop loving you, or the child who does something you've asked (over and over) for the first time.  That's ALL we are really looking for, is "proof" that "someone is in there" and we are connected to them.

So when Theory of Mind says Autistic people don't have any inkling of what others around them are thinking, that they even are thinking - are we saying that we can't make effective "contact"?  There are too many parents, too many families that KNOW that not to be true, that have WITNESSED the empathy and concern.  We ARE making contact.  But it's like we are in totally different worlds, bridging unbridgeable gaps...

I had some insights on the mechanics of mediation itself too...

Meditation is NOT about stilling your mind.  The whole "thing" about meditation is self-awareness, self-acceptance.  It is characterized by being able to live "in the moment" - not trying to hold on to a past or avoid a future. There were 2 things the instructor said that REALLY hit home with me:

Think of your mind as the sky- VAST.  Your thoughts are like the clouds, the weather.  They roll around inside the sky, but the sky is always bigger than the weather.  His instruction was to "see" the cloud, the thought, identify it, and let it just pass through.  Just let it "be" there without holding on to it...  Here's what I saw:

From the top of the mesa you can see the sky for ever, from the curvature of the Earth to the mountains reaching for the heavens.  Settlers walking across America could see landmarks for weeks (sometimes 4 to 6) before they were actually at them.  If you haven't driven across the deserts and seen the Big Sky - you need to follow in Lightening McQueen's footsteps and do it. Historic Latin American literature features the Bigger Than Life geography that is America.  From Skyline Drive, Virginia I can see at least 13 ridges of mountains to my west, stretching into West Virginia and Kentucky - places I cannot drive in one day, and each nook and cranny holds a story, several epic life histories.  The sky is VAST.  From the top of the mesa, I saw the clouds, casting great shadows across the Earth - you drive through them on the interstate, can see the lines on the ground of dark & light - but from the top of the mesa you can see the shadow footprint of entire clouds.  Then a Great Thunderhead Storm, rolls across the desert - you can see the cloud extending up beyond your sight into the atmosphere, and hear the thunder crash across the flat lands.  The Earth turns dark beneath it, from the shadow and from the deluge of water that is washing the ground below.  I have driven in one of those in Albuquerque.  On one side of the line the ground was sandy, and on the other mud, rain so thick wipers could NOT keep the windshield clear, and you saw it as you came into town, could see the ribbon of highway leading into the heart of the storm, and disappearing into the wall of water.  I have also seen those storms from the top of the mesa that stay away from the highway, that follow the alleys of the mountains and rivers, that seek nature's curves and convolutions - not man's straight highways.  You can see them for hours, and then never get "in" them.

And I had a sudden insight.  I suddenly understood what it meant to live "in the moment".  If I am standing atop the mesa or the mountain, I can observe and eventually predict with some accuracy the familiar path of travel the clouds will follow, but I cannot stand atop the height and call them to me!  There is no use in worrying about the cloud that will never reach me.  It will either come, or it will not.  And if and when it does, it shall pass - it cannot "stay".  I will have some consequences of the cloud's path to deal with, whether they are big or small, but I will again return to the sun and find glory in it's warmth and power.  If I spend all my time preparing for the Great Thunderhead, then I will not have time for the light mists, or the sunny days, or the rainbows.... and I may spend time being afraid of a Great Thunderhead that will NEVER cross my path! 

Then, I had a vision, of "falling"/ "flying" off the mesa into the cloud, of pulling the Great Thunderhead to me and pulling me to it - and I suddenly understood all the conversation about creating our reality, about finding what you seek, about how our expectations determine our outcomes!  By "choosing" to be as big as the sky and let the cloud follow its path, I free myself from it.  It will either come, or it will not.  I will have times when I am wet, and times when I am dry.  Peace is NOT in "stillness", it is in bobbing through the changes, rolling with the punches, dancing with time, not trying to hold it.

Love trumps everything.  Most cultures hold this Truth, but in meditation, the idea is that your self-love, self-acceptance is what creates your ability to be as "big as the sky".  If you are trying to form the clouds because you fear them, then you will be immersed in them, not larger than them, but if you you can find a place to value, to love everything you find, then you can accept it into the picture and allow it to "be".  The lesson of meditation is that love starts within yourself, and once you can accept you, even with your shortcomings, then you can accept others.  Once you have "loved" your own pain (looked at it, felt it, valued it, solved it) you can look to others with compassion because you know their pain too.  Empathy, compassion - the outward expressions of Love - have to begin with in the self to have genuine understanding.  And Love trumps EVERYTHING.

Love and JOY are NOT the same thing.  As an Autism Mom, I find Love even in things that do NOT bring me joy... like cleaning crap out of the carpet or finding an entire bottle of shampoo emptied in sink, or seeing my grandmother's arm chair collapsed from jumping.  These actions bring me sorrow, but I can choose to either Love them or Fear them.  If I am choosing Love, I see these sorrowful events as windows into my child's function, communications into his needs - whether they are sensory or emotional or intellectual.  With Love, I can use these as opportunities to connect with my child and then define new ways to relate (act towards one another).  Fear drives me to correct without providing alternatives, with out identifying the underlying drive (communication), and if I continue to operate fearfully, I will undermine whatever  loving actions could have been manifested, continue to warp our relations with fear.

I speak of this often to my children.  There are so many "things" they need to know about God and religion, but ultimately there is One Truth:

Make EVERY decision out if Love. COMMIT LOVING ACTS.

In discussions about social appropriateness (that was a rude thing to say), in discipline about treating resources wisely/ respectfully (not breaking toys, not leaving messes), in demonstrating treatment of animals (gentle hands on the dog), in helping them accept their differences (refereeing their jealousy, offering them labels to call themselves) - in ALL things, there is One Truth that could motivate ALL their actions - COMMIT LOVING ACTS.  I tell my kids all the time, that the only rule is to COMMIT LOVING ACTS.  If you Love someone, you will think about how your actions and words affect them  - you will try to think about if something you are doing will worry them (wander too far, eat unhealthy things, practice dangerous activities, etc.) and you will show you love them by helping them not worry (building TRUST).  Jesus said: Love others as you love yourself.  So DO that, be kind to yourself and others!  Forgive yourself and others! Take care of yourself and others! Be sure that every act you make is motivated from Love, and you will not mess up!

This discussion has been helpful to us in so may arenas.  I use it to talk about Star Wars (Anakin commits murder out of FEAR for Padme, for the vision of her death he sees.  He could have made the decision to LOVE her every minute he had her, but he did not - and his redemption comes when he chooses to LOVE Luke instead of FEARing the Emperor.)
We use it to talk about conservation (we can choose to LOVE the land and those who live on it, to honor their natural processes, to be a respectful part of that process because we LOVE it and share it, or we can act out of FEAR that people don't think like us and have to be kept away from nature, or FEAR that putting animals first will destroy what we already have or could have).  We use this to talk about our daily wranglings with family dynamics (your sister sees you get extra time with therapy, she is AFRAID that she gets less time because we don;t love her, how can we show her we LOVE her?  You grandmother's body is very tired, and soon it will no longer work for her.  She is AFRAID that we will forget her, how can we show her we LOVE her?  Your bother hears people talk about how different he is all the time.  Do you think that he is AFRAID he is not supposed to be different? How can we show him we LOVE his differences?). I use it to talk about sensory processing (We are doing something new, we don't know for sure what we will need to do, but should we avoid it because we FEAR the unknown or should we prepare ourselves and LOVE learning).

Ultimately, every decision by every person is driven by one thing: what you think of "people" - either you FEAR them, or you LOVE them - either you go through your life expecting to be lied to, cheated, hurt or you go through your life expecting the best of everyone - including yourself.  And it IS a choice.  And you, a parent, shape the direction your child will face first.

Back to the seminar: I expect to follow up with the instructor or another formal meditation community (because I learn better in community) and keep exploring, because for me, it is will probably be an effective window into action.

Monday, December 3, 2012

DSM change

SO, thoughts have been FLYING around about this business for some time.  I kinda thought I'd wait and see how this all played out...

So, it played out today.  The news is that Asperger's is NOT a condition/ diagnosis anymore.  As I understand it, my son will now have "High Functioning Autism".

There are MANY MANY blogs and posts discussing what this semantics means.  Will it be "easier" to get services now that he has "autism" in his diagnosis?  Will people assume that he functions higher than he does?  Or lower than he does? Does it make the spectrum wider or longer? or too wide and too inclusive?  Will it stop this debate amongst parents that we just don't understand each other 'cuz we do or do not have verbal kids, or poop smearing kids, or socially backwards kids?  harumph.... not likely.

What does it mean for the legions of adults and youth who have gained a sense of identity, of community by being Aspie or Asperger's?  You don't think there is a big group out there?  Check out Wrong Planet's website.  I follow 19 pages on Facebook with Asperger's or Aspie in their title... that doesn't include the dozens that use ... creative ... names to describe their unique brand of crazy. The word does NOT belong to the DSM.  There have been several posts about how the community will continue to use the words "asperger's" and "aspie" even though doctors and insurance companies will not.  

I guess now we will ALL become self-diagnosed, hmm? :)

And why not? Who is to say that there should NOT be a sense of community with this label, these attributes?  One post today likened the feeling to telling an African-American that they can no longer be African - just American   While that is a whole political hot pot that I do NOT want to get into - I think the point is VALID.  We all often find that the sub-group we adopt IS important to out sense of identity, of self-label.   Ethnic origin is only ONE means by which we sub-group ourselves.  Have you ever noticed that the FIRST question people ask you is "where are you from?"... 'cuz we also like to sub-group our selves by geography - people ALWAYS have.  And it is VALID - I am very much shaped by the fact that I grew up in Southern California, and that my family is from Appalachia... and that I live in Appalachia now.  Often we identify ourselves by occupation.  I can spot a cop or a soldier pretty readily in a crowd.  Teachers are EASY to see as soon as they open their mouths.  I can immediately recognize the people with oil under their nails and ground into the cracks of their hardworking hands, or the calluses of a guitar player.  Have you never identified your self by your religion?

We all lump people into categories all the time.  We are pretty much designed to do so.  Brain based learning shows we learn by "chunking" - a horde of information related to each other - that's lumping to me.  What ever the label, big or small, we look for it, we use it, to identify ourselves.  I chose the university I attended BECAUSE not only did I expect to meet a certain caliber of people, but I expected to be identified with that caliber of people, with a group that uses an honor code, lives it daily.  Living the Girl Scout promise is what makes me a Girl Scout, not the $12 registration fee. I am a card carrying SASS member (single action shooting society), not because I have a card, but because it shapes the way I look at the world.  

The other side of this argument is that a word is "just" a word.  OK - and we ALL know that we instinctively and immediately know those people in our lives who live by their word, or just use words for convenience.  So sure - it's just a word.  And how you use it is YOUR choice, and all the rest of us get to make OUR choices and we will make judgments (choices) based on how you use it.  Sure, we could use other words.  We could all be Geeks.  We could resort to all the degrading name calling labels that have been used for centuries for those who stand outside your realm of "normal", those who stand on the "fringe" of society, who are the Movers and the Shakers, those Idiots with Harebrained ideas like electricity, or those who don't have words but FORCE you to face your inner humanity, to care for someone different from yourself.  We could use other titles we made over the years, for ourselves - those titles that assume we are better than you because of our differences, those titles that demean you just as you demean us so we are all "even".  We could be your Alien Overlords, if that suits you better.

But part of being "different" is that you are "gifted" with the opportunity to see that different is NOT less, or more - it is ONLY DIFFERENT.  So we have found this word, that was once legitimated by the "medical profession" and grown it into a new thing, a new identity that gives us AND you permission to be different.  It has become a new thing, a label for a group of features, attributes that remind us of ALL human worth, in ALL of its diversity, a name that lets us give ourselves permission to be distinct and odd and good all at the same time.  We, the people who YOU once labeled, have taken ownership over this label, found it to Ring True in our Hearts as a Name for what we ARE, regardless of how others use it.

So, kiss my grits, DSM.  The world of doctors and insurance companies and "medical professionals" no longer owns the word Asperger's.  These labels (Asperger's and Aspie) are strictly the province of those "self-diagnosed" people who recognize a pieces (or pieces) of themselves in each other and we create a community of our common attributes, an identity that lends us respect for each other and ourselves. 

The fighting with insurance companies and schools for services will not change.  The use of specific labels in lawmaking and social rhetoric will not change, even if the specific label does.  The American Medical Association will re-write it's own Diagnostic Manual gain in 5-10 years, anyhow.  

The sense of identity gained by Aspies by calling themselves Aspies won't change either.

UN Disabilities Treaty

OK, So while I have DEFINITE political ideas, I shy away from joining the fray of debate because "issues" often lack long-term vision or impact.


While admittedly, I am not anyone's "legal counsel", and I could give up more of my time caring for my children learning more about the UN Disabilities Treaty, I CAN tell you that what I saw of the testimony before congress enrages me.  Mrs. Durbin testified that the IDEA legislation that "enables" our disabled children to get their needs met through public school needs to be extended through out the planet.

Really?  So the IDEA legislation is helping ALL disabled students?  Your statistics of improved school attendance indicates that these students are receiving "improved" care and education?  I CERTAINLY am an expert of what OUR experience has been, and it indicates otherwise...

There is a LARGE movement afoot to require cameras in ALL special education classrooms because the physical and emotional abuse of these students is so prevalent.  I know that pleas for this action come up on my Facebook news feed at least twice a week from the over 20 pages I follow in the Autism community.. and I am WELL AWARE that there are MANY more.  Heartbreaking, gut wrenching stories abound of families who have to become detectives to protect their children from the people who should be caring for them, of families trying to find ways to heal hurts NO child (OR ADULT) should face (physical assault, abandonment, etc.) of families DESPERATE to be partners with the educational system that continues to sideline them and deny services.  There is an entire industry of advocates, authors, support groups, service providers, educational facilities and ALL their educational staff marketed SPECIFICALLY to the beleaguered parents who are told from the day they get the [Autism] diagnosis to "man up", "get their big girl panties on" and become "warrior parents" prepared to "fight the system" tooth and nail, to sacrifice their financial stability because they need to provide therapies & treatments NOT covered by insurance or the educational system while they lose the income of one parent. 

While my experience is with Autism - I know a family with Deafness in which the fight to get appropriate services was years of argument.  The school system finally hired her as a driver to get her child to a school that COULD meet his needs (which of course is several counties away).  She struggles to maintain a job and care for her other children as well.  Where did IDEA "make" the school system meet that child's needs?!  The MOTHER is meeting that child's needs!

While I was active in the Special Education Advisory Committee (SEAC) for my county I met MANY other parents of sped kids.... and EVERY SINGLE ONE OF THEM told me to be prepared to fight, to be prepared to go to the administrators and teachers and hold them to providing the services they had already committed to on paper, the "rights" the IDEA granted their student.  I was warned over and over again that I had to FORCE the school to meet its "legal obligation" to my student.  School administrators talked in one breath about how there were many parents who did not complain about their services, and followed that immediately with complaints of parent non-participation.

To be QUITE frank - KISS MY ASS I.D.E.A. IS HELPING EVERYONE!  It has NOT helped many many people I know - both in my immediate geographic area and through the internet. And it sure as hell does NOT "guarantee" the rights of disabled children to education!

This UN treaty is supposed to hold our system up as an "ideal"!?!  This treaty is supposed to impel other countries to action?  Our "ideal" does not compel our own government to action! How can it compel others?

And it IS a threat to our sovereignty   Ratification of this treaty, they way it is currently written, would create that dreaded legal "precedence" of international law trumping national/ federal law.  The Constitution was not ratified until it specifically delineated what it was NOT allowed to take away from citizens and states - not just what it was allowed to do to everybody.  No UN treaty should take away my right to decide what MY child needs, ESPECIALLY since he is "special needs"!  

You wanna hear our story? Check out JT's Journey on Facebook - read the notes. I have NOTHING to hide.  We were done WRONG, but NOT illegal... we checked.  It is IMPERATIVE that I be respected as the "expert" on my child, as the "authority" on his needs.  I DID try it society's way - I gave my child to the school system, we went to lots of doctors, and I played just as I was supposed to - I went to the IEP meetings, I researched my options, I compromised on what the school would provide, I was an active parent, seeking to follow up at home with what they did at school, to be sure that I advocated and participated in as many fronts as I was legally allowed, and STILL we were violated, STILL we were victims of other people's bad personal politics, STILL we had a 5 year old who's body was killing itself with stress, in a VERY literal sense.  


And a funny thing about our choice to "opt out" of help from the schools.  Those people who are the home school legal experts, outright said to refuse all services from the public system if possible, because LEGALLY, if you receive any services, they cannot defend you.  Did you read all that stuff they sent home about your special education eligibility?  It says that if you agree to have your child found eligible, you MUST now abide by the decisions of the IEP team - period.  If the "IEP team" decides that you, the parents, are retarding your child's progress, or that you are inappropriately supporting your child's disability - they have the legal responsibility to override your participation on the IEP team and make decisions anyway....  I don;t know about everyone's situtaion, but we ALWAYS had more school employees at any IEP meeting than parents.  Yes, If I refuse to sign it, they can't "implement" their plan...

What? You don't think that the school can get social services involved and have your child taken?  That is EXACTLY what happened to my neighbor.  It only takes one accusation (grounded or not) of neglect (like your kid doesn't get enough baths) before social services is REQUIRED to investigate - because that is what we have set the school systems and teachers up to do (see my previous post about teachers).

Maybe you get help through the "waiver" that gets medicare to pay for services in home?  It is a waiver BECAUSE you are waiving your "right" to have your child institutionalized.  All but 3 families I have ever spoken with who get/ use the waiver have told me that had to tell social workers that, yes, their child requires institutionalization (even though advocates swore that was illegal).

LAWS do NOT protect people, PEOPLE making morally correct decisions protect people.  At this point, my family has withdrawn from the games, we refuse to allow ourselves to be victims of other people's personal politics and job ploys.  We have holed-up, and shut-up and tried to find our OWN healing... And THAT right is the one that needs to be protected.

Look, I want people with disabilities to be protected all over the world.  I do not want ANYONE EVER ANYWHERE to be persecuted or abused or neglected because God made their bodies or brains different from the "norm"... I fervently believe that God made every person different for a reason, and they have a divinely commissioned task - that's why they are here - and I want EVERY person to be enabled to complete that task, to grow and share the BEST of themselves...

But, all politics is LOCAL.
It never seems to matter - until it happens to YOU. And it happened to me, so I want to keep MY CHILD SAFE.

Friday, November 30, 2012

Good kids

some days, I am SOOOOOOOOOOOOOOOOOOOOOOOOOOOO frustrated....

and some days I remember to just watch and be AMAZED....

I have Good Kids!

Like yesterday:

We had brunch at Panera - we were commuting home from Maryland to Virginia and after getting stuck in city traffic we HAD to eat, so we went to Panera.  My kids polished off 5 meals with me...1 bowl of soup, 3 cups of soup, 2 sandwiches, 1 salad and 1 quiche.  This particular Panera was near a Big Mall and a County Government Center - they were the ONLY children in the restaurant (home schooling seems to be less prevelant in these uber urban areas - I guess they get the services they need/ want), and while there was some "contact sport" involved in the salad eating, sandwiches are supposed to have fingers, and the use of spoon was superior!  As I sat surrounded by urban professionals and uptown moms, I was very proud of my children comporting themselves approriately and decoriously.  You know, we ARE pretty cool...

Later that evening, after Girl Scout meeting, as we completed our "eternal hang out at the library" day, I momentarily misplaced my son, and found him in the bathroom, with poop all over his hands and the toilet.  He has developed some.... unorthodox.... methods for coping with constipation mechanically.  Naturally I found the librarian and asked for extra paper towels and sanitary wipes.  Thankfully it was near the end of the library's operating day and I did not have a big audience to deal with this just fabulous activity.  The library staff was nicely appreciative.  You know, we ARE pretty gross...

Once again, I am reminded that ALL lives are an amazing combination of Tradgedy and Triumph, of Greatness and Horrificness... the ups come with the downs and the downs come with the ups...

The lesson seems to be: Ride the waves, man...  Just BE where you are, 'cuz you're gonna be someplace else soon. 

It also is that everything takes 5 times longer than you think it should....suck it up.

Sometimes I am am so proud of all we are, as a family...

And sometimes I am SOOOOOOOOOOOOOOOOOOOOOOOOO frustrated...

Tuesday, November 27, 2012

Oh Christmas Tree...

So we do not put up a Christmas tree... and the stories to support that decision are... lengthy.

Oh, I tried!  When we were first married, I SOOOO wanted a tree, to feel like I was in my OWN house.  And I told my husband "we are NOT going to alternate years between parents! - we are building our OWN traditions!"  I was VERY afraid of being forced into the "every-other-year" thing after kids came - other holidays we travel, but NOT Christmas... kinda.

In reality, it's when we could get off work - so we didn't really have trees because we would be with one set of parents before the holiday and the other immediately afterwards - home for only 24 hours... traveling from one coast (California) to the other (Maryland)... it just wasn't practical or safe to have a tree (I grew up in CA - the fire dangers of a dry tree are WELL known to me!).

Then, kids came.  I was gonna do this thing AT HOME, no compromise.  One year I got a tree too big to get in the house - had to saw off most of the top.  One year, I never got it IN the house, just TO the house - put it in the dog's water bowl to keep wet - and it FROZE in there - had a BIG block of ice at the base I couldn't get in the tree stand, so we just embedded it in a snow bank outside.  The kids & I used spatulas to cover it in peanut butter and threw bird seed on it for the birds.  We cannot find our decorations anyhow.  They are HERE, somewhere, but too well stored to be accessible... and it is just TOO much work to rearrange all my crap for just one month anyhow.

And winter is a HARD time for us.  I personally have STRUGGLED with the seasonal affective disorder, BIG TIME - I grew up in Southern California!!!! we don't have this many dreary days back-to-back!  I struggle.  It was REALLY apparent in my son though...  the winter he turned 3, he lost the ability to speak... we went for 3 months with SEVERE stuttering and major head banging.  It was SCARY.  The next winter he developed weeping lesions on his face (has a scar) for months.  The next winter, we just took him out of school for the month of December - road tripped to Las Vegas - and he was AWESOME, but the that spring saw the HSP (auto-immune rash)...  The next winter was last year - the year we took him out to homeschool... the winter we found out how bad the bullying was, how he had been restrained without our knowledge, that he was having nightmares from his school experience... it was a time of difficult healing for us.  This winter has brought a much lowered frustration threshold - when the OT told us last month to "get that kid medicated" because he is reacting in such a way we cannot see any triggers, and he is getting violent...

I have always argued that the Holidays are VERY difficult for him. We go from SCARY Halloween black & orange, to Thanksgiving travelling (it is his grandfather's birthday) and immediately into new music on the radio and Red & green in ALL the stores.  The TV shows change, the radio changes, the stores look different, the classroom schedules are TOTALLY disrupted (not as big a problem for us now)... I can understand where he'd be NOT OK.  And the more I reached out to the Autism community, the more I saw that this was pretty common behavior.  

I do also think that with my son's "extra sensitivity" that the general emotional agitation of the season is a problem for him too.  Everyone you meet and interact with is emotionally charged, one way or the other, over upholding or creating traditions, or helping others be happy, or religious zeal... I can only IMAGINE how overwhelmed he must feel from all quarters, ALL the time!!!!  That was part of why we took off and road tripped - it would only be us, trapped in a car, driving across an empty dessert...

So I decided to strive to keep things "normal"/ "ordinary" at home, to just let this be the place it is - the place where we all just let it go and be our odd selves, where we find ways to live together as we grow.

BUT - my daughter's birthday is Christmas day...
So we really CAN'T ignore it!!!

So I hit upon this idea last year.  It sorta worked, so I am gonna try it again this year.  I find it takes a while for things to kinds gel into a workable tradition...

The year I froze the tree to the dog's bowl, I just cut a tree out of wrapping paper, and we tapped it up to the wall, and stickered the holy bejeezus out of it - so we could have a place for presents.  The whole big paper (and stickers) kept falling down - there is just not enough tape in the universe, people...

So last year we decided to put our tree up a little at a time... with paper hands.  We cut out a few hands (ours) every day, and taped them up in a BIG triangle, and prayed for each hand... either for someone whose name we wrote on it, or for something we needed help with (as I said, it was a healing time for us)...and when others gave us hands, we prayed for them too.  There were whales and dogs prayed for, and aunts and uncles, and sleep and safety...

Our "tree" never got big, but it was enough.  As a matter of fact, I have not taken it down.  Partly because I just didn't "get to it", but partly because, I really do NOT want to lose the memories and prayers we offered, the healing that we found, the kind of ritual and ceremony we built for ourselves that reminds us of the "reason for the season" and all the people that love us, through think and thin - the community that supported us when we were in a dark time...

We will ask our family and friends for hand prints again this year.  And we will make more ourselves, and we will offer prayers of thanksgiving and petition.  And I bet I will be too "lazy" to take it down again... That's gonna be a BITCH to scrap book in about 10 years (or less)...

Sunday, November 11, 2012

Thanksgiving 2012

So.. i thought I would compile all those Facebook posts about what I am thankful for htis year.  I have NOT done this practice previously, and clearly need to be better about acknowledging what is GREAT about my world :)

I TOO need to be more intentional with my gratefulness, so let me start listing:
1) the sun
2)my dog
3)my family
4) my friends
5)ideas/ thinking
6)peaceful transfer of power
I think too much to try to explain these things...

ok - I take it back - HERE is what I am GRATEFUL for today:
I do NOT have to listen to the news or radio or whatever else and be bombarded by FALSE news... I have the right and ability to let the voting ACTUALLY HAPPEN before the counting begins - to believe that NO amount of "exit poll" surveys or media hype drive this elective process - WE, the VOTING CITIZENS do - and the answers will JUST HAVE TO WAIT

Today's gratefullness is for....
And I don't just mean the kind lived daily by my father & other police and military personnel, but also that gonadular fortitude that empowers people to speak their personal truths, or to forge new paths for themselves and their families - the COURAGE to walk out of an abusive relationship, the COURAGE to go to the dreaded dr appt, the COURAGE to try new foods, the COURAGE to get back up on the horse, the COURAGE to cling to faith in the malestorm, the COURAGE to reach out for help, and the COURAGE to gift help to others..
Thank you, God, for COURAGE - mine and other's

I am blogging about my knees, and realized i have never had the chance to THANK those who stopped on Magnolia Ave in August 1994 when they saw me fall and not get up, who went door to door along Magnolia to find a house that would call 911 for me, who stayed and watched the dog and KIDS with me until my dad showed up... I am SO SO SO thankful they had the COURAGE to act and assist when the need was great, even a stranger at unknown risk to self (Rusty- dog- was a 200+ lb malamute!) I am humbled and shammed that I did not get to follow up with them. THANK YOU to everyone who has the COURAGE to step up in emergencies!
large plastic drink cups
I was gonna get all philosophical again, but realized how many of these i have and figured I needed to acknowledge. they are awesome bath toys, good for washing babies & dogs, just the right size for my kids to carry but hold enough to be useful in only one trip, excellent for getting water in the dog's bowl, essential for long road trips, act as a dog's water bowl in a car cup holder, and easily replaced (except for the beer/ rush cups we still have from college) We REALLY do have A LOT of them....

for today - thankful for HUMOR!!!!!!!!!!!!!!!!!!!!!! or all children would die suddenly...
Today's thanks: CONNECTIONS
my fortune cookie: Deep faith eliminates fear.
"decide that you want it more than you fear it"

just realized I am one "thankfulness" behind...
so I add: phones. I would be SOOOOOOOOOOOOOOOOOOOOOO lonely without them!


HILARIOUS pics on Facebook
While this may seem shallow - I cannot emphasize to you how INCREDIBLY important it is to know that not only am I NOT the only person who finds that funny, but even when I am picking literal shit out of the carpet or finding our most valuable possessions chewed and broken, or wanting to melt into the ground with embarrassment as my child licks windows at the library - there is SOMEONE out there SOMEWHERE who has a pic that can make me laugh until I have to pee.. and it WILL be OK again...
chocolate - it saves lives everyday...
I am behind on my gratitudes and spreading holiday cheer... because we have been with the in-laws all week watching my mother-in-law at the hospital. While it is rather unclear exactly what ails her or how to resolve it, what is clear is that she is in IMMENSE intolerable pain. At this exact point, while the family remains hopeful that she will come home, the conditions of that return are unclear. It has been a blessing to see us all come together and support one another, but please keep My mother-in-law and her immediate family in your prayers as we face a time of transition... I hope everyone had a BEAUTIFUL holiday, and shared the sacred love of family this holiday is about...

UPDATE:  My mother-in-law's body is getting very tired.  It is clear that more ails her than we previously thought, things she had "protected" us from for a long time.  She is home, right now, and the family is finding new ways to support her and each other.  She looked at my son and recognized him as her own (my husband).. which is as it should be.  She knows her own children and grandchildren, they trigger her memory the strongest, but she is very tired.  She is fighting to stay in her body, and we try to help in what ever ways we can... and pray for her peace.  I hope everyone had a splendid holiday sharing that sacred family time.