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

dragon pups

dragon pups

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...



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