Friday, February 24, 2012

Cr@p People Say to Parents of Autistic Kids

I'm sure you've heard of the recent "Sh#t People Say" video meme.  I've only seen a couple, but one popped up on my FB feed a couple days ago that is dead on.  This video is by Stim Nation, posted on YouTube, and shared with me by the ever-amazing, totally-gets-it stark.raving.mad.mommy.  This is SO funny, in a "sad that it has to be pointed out" kind of way:

I shared this on my FB page, and immediately came up with more things I could add to this list of inappropriate comments. Only, many of my ideas would fall under the heading of "Cr@p Ignorant People Say To Parents of Autistic Kids." Here are some of the lulus I've heard, or friends of mine have heard:

Regarding behavior and maturity:

"He just needs to grow up." 
       (Um, no - the delay in maturity is PART of his autism spectrum disorder.
       You can't force maturity.)
"Maybe if you disciplined him more he wouldn't act that way."
       (And you'd whip him into shape in a week, right?  You wouldn't last two
       days, my dear.)
"Just spank him, and he'll stop." 
       (Actually, no, it didn't stop his behavior.  It made it worse, so we stopped
       trying it a long time ago.)
"You know, that kind of behavior could land him in jail when he grows up." 
       (Thank you for combining in one comment every responsible parent's worst
       fear, a general condemnation of our parenting skills to date, and a put-down
       of our intelligence and understanding of the possible future consequences
       of his choices.)
"Does anyone else in your family act that way?" 
       (Are you related?  No?  Then you shouldn't even ask that question.  I
       certainly won't answer you, or ask you if others in your family also
       ask obnoxious personal questions to casual acquaintances.)
"He acts just like his (father/grandfather/cousin/grandmother/aunt/
mother/distant relative) who had "problems."
       (You may know us, but THAT was uncalled for.  And maybe they had
       undiagnosed issues that no one ever knew about to help them with.
       Diagnosis or not, how understanding were YOU about them?)

Then there are the fun and games of sensory issues, especially dietary ones,
that most people feel free to comment about at some point:

"Just make him eat it."
       (Yes, I tried that.  Projectile vomiting at the dinner table got real old,
       real fast.)
"If he won't eat what you put in front of him, let him go hungry." 
       (That didn't work either.  You severely underestimate the determination
       and stamina of a kid with sensory issues and autism, and the choice
       hell of low blood sugar on top of that.)
"Someday he'll grow up and eat like a normal person."
       (And would a "normal" diet be exactly what you eat?  Are you a dietician?
       "Normal" for which culture or philosophy?  Gimme a break - if he eats a
       healthy assortment of food throughout the day and week, and is polite
       about what he cannot/will not eat, we're good.)

And gross generalizations:

"You do know that Aspergers is way over-diagnosed, right?" 
       (Why no, we just wanted to add a nifty label to our son for the rest of his
       life, visit various doctors and specialists just for the heck of wasting our
       time and money, go through the process of testing and diagnosis so we
       could have reams of paper proving that our son is different and needs
       extra services in school, and assume a burden of worry and stress
       about him well beyond normal human endurance.)
"He's not autistic, he's just selfish and immature." 
       (So are you for saying that.)
"Wow, he must be really good at math."
       (Been watching "Rain Man" or "Numb3rs" recently, have you?  If you're
       nice, I might volunteer the information that he has a math learning
       disability, but is doing very well anyhow, thank you.)
"I bet he'll be a scientist someday."
       ("Big Bang Theory," anyone?  Although we've had fun discussing which
       past and present inventors, scientists and innovators we think probably had
       Aspergers, like Thomas Edison, and Bill Gates.  And Safety Guy would
       probably make a great safety engineer, so you might be right.)
"Have you tried horseback riding therapy for him?" 
       (No, but thanks for the suggestion - it's a good one, but he's not into 
       unpredictable large animals, although that therapy has helped many people
       with autism and other disabilities.)
"He needs a dog." 
       (We considered that, but it just wasn't right for us.  Thanks, though - 
       that's another good one that really has helped many kids with autism.)
"Does he take things apart and reassemble them?" 
       (No, although he's interested in how things work.  Just ask him about fire 
       alarms.  Go ahead, I dare you.) 

And, since we home schooled him for 6 years to address his sensory and 
social issues: 

"If he'd been in public school, he might be better by now."
         (The snarky answer:  You must live near the best school for kids with 
         autism on the planet  - why don't all of us with kids on the spectrum 
         move to your district?  What's the housing market like there?  Can we
         arrange a play date with your kids?
         The short answer:  There is no cure for autism, there is only gradual 
         progress over time - sometimes a LOT of time.  
         The long answer:  If we'd been convinced that public school 
         was the best place, we wouldn't have pulled him out.  But the fact that he 
         could hear everything for three classrooms around, was confused and 
         scared by large noisy crowds, was overwhelmed by the social 
         expectations in large groups, and was flat-out terrified by the 
         unpredictable fire alarms swayed us to seek a calmer, more controlled 
         environment for his education.  The teachers were great - it was the 
         physical environment that was the biggest barrier to his education.
"If he'd been in public school, you'd be better off by now." 
         (The snarky answer:  You can't know that for sure.  And if you could 
         see the future all those years ago, why didn't you TELL me then?  Pfft.
         The short answer:  This decision wasn't about me.  
         The long answer:  If you mean we'd be better off financially, that's true.  
         But this wasn't a financial decision.  If you mean emotionally, there's a 
         grain of truth to that as well.  Raising a child with an autism spectrum 
         disorder is exhausting in body, mind, and soul, and frankly it's wicked 
         hard on a marriage.  Home schooling compounded that issue.  But I 
         repeat:  this wasn't about just me.  It was about what was best for 
        our son and for our family as a 
"It's because he's been sheltered." 
         (Yeah, he was sheltered by socializing with people of all ages across 
         multiple situations and learning with lessons tailored to his skills and 
         interests using multiple learning styles and group classes and 
         extracurricular activities and field trips. . . .)   

       (Random thought:  someone needs to make a 
       Mythbusters episode spoof about home schooling.)

Please don't get me wrong - I'm glad to talk with people about our son's
Aspergers. And people who really care about our family get a "pass" for
the occasional abrasive statement. Anyone can blurt out something
inappropriate then regret it, and learn how to better ask the questions they
have. And I'll admit it - sometimes we're a bit hypersensitive about people
asking questions, after some of the lulus we've fielded. I'm okay with advice
from people who know our son, too. It's all in the delivery and the
assumptions behind the comments. If the premise is, "Maybe they don't
know this new research or therapy, and maybe they'd be interested in
hearing about it," I'm okay with that. Just don't assume that you know
better about my child than my husband and I do. Don't assume he's
somehow less intelligent or somehow defective because of his quirks
and issues. If you don't know, don't comment. Don't assume if you're
not sure, just ask us (or ask our son - he really can speak for himself).

Trust me, my husband and I would be happy to talk to you about how
autism and Aspergers really affects our son and our lives.  The cure for
ignorance is education.  (I also promise to suppress the urge to smack
repeat offenders up 'side the head.)

Wednesday, February 22, 2012

Meltdowns and Self-Awareness

Three steps forward, two steps back.  One step forward, three steps back.  Four steps forward, one step back.  The only certainty about autism spectrum disorders is the uncertainty of any progress for the person who has it.  Just when we though we were doing pretty good and Safety Guy was hitting a new high, a nice, big meltdown came along to bite us in the butt.

And it's not like it was a long high time - just a week or so of thinking, "Maybe we're making an impression.  Maybe being grounded has really gotten his attention and he's making a habit of better choices.  Maybe this will go on for a while longer."

Sadly, no.  Safety Guy earned his coveted electronics privileges back this morning, after two whole weeks of doing without.  Just after 4 PM, he lost them through the weekend.

It's times like this that make me seriously worried about his future independence, and the effects his choices will have on his life.  While I'm not a fan of the term "high-functioning autism," it is a reasonably good description of his place on the spectrum.  He's mostly socially acceptable and polite - except when he's not.  He's mostly responsible - except when he thinks he shouldn't have to be.  He's mostly friendly and kind - except when he's short-tempered and mean.  He's mostly gentle and sweet - except when he loses his temper.  And while everyone is like that to some extent (we're only human), because of his Aspergers it worries me more.

Am I holding him to a higher standard because of his autism?  Am I afraid that he'll be punished more harshly by society when he steps out of bounds because of his Aspergers?  Am I worried that I haven't done enough for him?  Am I afraid that I'm being judged by everyone who sees my son's behavior?  Am I afraid that his choices influenced by his Aspergers will bring him heartache and trouble throughout his life?

Yes.  Yes to all of it at one time or another.

And I guess it would be like that for me as a parent even if he did not have Aspergers, worrying about his choices and his life once he leaves our home, our supervision and our guidance.  I feel somewhat like that about his neurotypical sister.  Goodness knows she'll make her own better and poorer choices as well.

It has not been a good afternoon for the "Mom guilt" or the "what ifs."  His meltdown gave me an almost instantaneous headache as well as a sharp heartache.

But there's hope.  When we got home (we were out in the car when the manure hit the windmill), he went right up to his room.  Instead of having another meltdown, instead of hitting the door or yelling or otherwise venting, he was quiet.  Very quiet.  I left him alone for a little while, then went to check on him.  He was sitting on his bed.  He said, "I'm so angry with myself for the way I acted," calmly but sadly, and without blaming anyone else.  My heart broke for him, but I was so glad to see that he was owning his actions.  THAT was a victory, right there.  No excuses, no drama, just a simple acknowledgment that he'd messed up, and he owned it.

One step back, two steps forward.

Sunday, February 19, 2012

For Lauren Belius - Enough, NY!

I am reposting this from my friend Blondee's blog.  A little 6 year old girl named Lauren Belius was murdered last summer, in a small town just down the road from here.  This past week her self-confessed murderer (who had requested and received a trial by judge instead of by jury) pleaded not guilty by reason of insanity, and was found not guilty for that reason by the judge.  He was sentenced to spend time in a state psychiatric center, to be reevaluated in 12 months.  There is no guarantee that he won't be released in the future without having served the time his crime truly deserves.  It's a travesty of justice.  Please read, and share.

Child Killer and Enough

 There is no relationship that lasts longer in this world than the relationship of siblings. God's gift of best friends to us in life. Meet Lauren Belius and her twin sister Erica. Beautiful baby girls, aren't they?
 The girls were inseparable, Lauren being the brave 'older' sister, and Erica being the shy little sister.
Older brother Nolan didn't just have to share the spotlight with one cute little sister, but two! These three joined our Taekwondo studio last spring. Busy little kids that we all got a kick out of watching as they learned their counters, kicks and kata's.
 Lauren and Erica- blessings beyond words, beautiful memories made of first birthdays, milestones, holiday mornings and their sweet personalities.
 Until one horrific morning in July of 2011.
 David Trebilcock stabbed Lauren to death in her own bed as her twin sat inches from her in the very same bed, horrified and screaming for help. David had been plotting her murder, going as far as to lock the family dog in the garage and barricade the bedroom door with a dresser before approaching these amazing girls, naked- to fulfill his plan of killing a child.
 By God's grace, Lauren and Erica's mom was able to break into the room and attacked David, incapacitating him so she could get her girls out of his evil clutches. Lauren succumbed to her injuries, tragically the little girl with the big grin left her family that day and went to Heaven where she would feel no pain, have no fear, and never be harmed again.
 Now a little sister who was shy and dependent on her older, brave sister would be left to navigate the world alone. Her twin, her other half, torn from her right in front of her, torn from us all.
David Trebilcock admitted to murdering Lauren Belius. He did not take the stand in his own defense, instead pleaded not guilty by defense of insanity. He then requested a bench trial instead of a jury of his peers and last week was found NOT GUILTY of killing Lauren.
Our community has been devastated by the murder of this sweet girl, a family broken forever, and a mom has been left to look over her shoulder the rest of her life for a man who made statements that make us all concerned that her other children may be in grave danger when he is released. This man had the foresight to lock a family dog away from the girls it would have fought to protect. He shoved a dresser in front of a door that would have allowed these girls to escape. This man is not an insane man, he's a cold, calculating murderer who just worked our system and has been freed of all charges by Judge Dwyer of Oneida County.
Our laws need to be changed!
There should be NO plea of insanity if you murder a child, and there certainly should be no bench trial demanded by the murderer!
David Trebilcock can be out in the world amongst you and me in 12 months!! A man who admitted he had intercourse with a 12 year old child. A man who admitted to having drug problems in the past. A man who hid his past from others and left other states when he knew he was in trouble. The very same man who murdered Lauren in cold blood.
Allison, Lauren's Mom is asking for help in spreading the word of this injustice. PLEASE, I am asking all of my readers to help me spread the word! Repost this on your own blog. Make every community aware of what our laws really do. Help us gain national exposure to get the ball rolling and make it so David Trebilcock and other child killers can not get away with this!
Please do not just link to this blog...too many readers ignore links. 
Please cut and paste! Right click to copy the photos. 
I thank you for your help.
Lauren's Mommy thanks you for your help!
The original blog post is from Blondee's Diary.

Saturday, February 18, 2012

Boot Camp

About a month ago I started a fitness class.  It's a "boot camp" class that meets at the same time that Princess Yakyak has her acrobatics class.  It's a little class, just three ladies and an instructor.  Nobody dressed to impress, nobody flaunting impossibly sculpted abs, no mirrors (thank you, Lord!).  Just us three average moms, sweating under the kind but persistent eye of our instructor.

Much to my surprise, I'm really enjoying this exercise class.  I even miss it if I can't get there, which amazes me.  (It happened just once, but I was totally flabbergasted that I missed exercising.)  It's not an easy class for me, focusing as it does on core strength (which I lack), balance (nada), and flexibility (Bwahahaha!).  But I'm pleased with myself for persisting, and I can see some improvement in my fitness and flexibility already.  Not much weight loss, but I think I've finally tipped the balance, putting on a few pounds of muscle, and now starting to lose weight.  It will take a while, but so be it.

The down side:  I've strained my Achilles tendons.  Owooch.  Working on concrete at school hasn't helped at all.  Time to start a gentle stretch/heat/ice/heat routine, and one of the fitness center owners (it's a husband/wife team) has given me a rundown of what to do to help my sore heels heal.  It's also time for new sneakers, and new insoles for my work shoes.  Hopefully in a couple weeks I'll be walking like I'm, well, 43, instead of like I'm 93. . . .

Friday, February 17, 2012

Shipwrecks and Meltdowns

And suddenly, a whole week has gone by and I haven't posted a single blog entry.  Sometimes I have so much on my mind that nothing gets written down, because I'm sorting through all the impressions and emotions.  It wasn't a bad week, really, but it was busy, and had some very frustrating lows.

Safety Guy had some more difficulty on Monday and Tuesday - attitude problems, obstinate  behavior, meltdowns, the whole Asperger's/teen boy thrill ride.  When he was younger, he used to bang his head on the door when he got frustrated.  Now he hits walls and slams doors.  We avoid physical confrontation with him, because that escalates things to the point that he might push or take a swing at someone - and with him at 6'1" and 225 lbs, that could get really ugly really quickly.  We send him to his room, knowing that he might make some noise, but he won't be tempted to hit out at anyone.

Anyhow, during his meltdown he hit and cracked the frame of his door away from the wall.  Once he calmed down, he was appalled.  I think he's actually a little bit afraid of his own strength.  I think he's just realizing that he's BIG and STRONG, and learning how to control his impulses has become an even bigger priority than ever.   As if we've ever not worked on that, oh Lord how we've worked on that over the years, but it's right at the forefront of my mind now.  (BTW, he'll help us repair the door next week.)

Safety Guy has been handling his grounding from last week's events at school with varying grace.  I know he misses his computer and video games, and the "comfort zone" they supply.  But he's been listening to lots of music, and reading.  Reading, and reading, and reading.  He's probably read more in the past week than he has in the past three months together.  He's revisiting old favorite books, and renewing his interest in old favorite topics.  (Shipwrecks and the Titanic, anyone?)

He had a good day today, and even though he's still grounded until next Wednesday, I decided to see if he could handle a little break from the grounding with a good attitude.  (Frankly, he was following me around the house, wanting to talk about what he'd been reading, and I needed a break without hurting his feelings.)  I told him he could use the computer for 15 minutes if he'd look up a historical topic for me and tell me about it.  It's using the computer, but on my terms.  He said, "I knew there'd be some strings attached," but he went along with it.  I had him look up Revolutionary War forts (which is related to what he's been studying in social studies for the past few weeks).  In short order he had pulled up information about Fort Stanwix, Fort Pitt, and Fort Ticonderoga, and we talked about what he'd found, comparing the forts and when they were built.  Then he was off the computer again, and happy with his "knowledge fix" for the afternoon.

After dinner, he came downstairs and was brimming with information he'd been reading about the Titanic.  He went on and on, at length and in detail, sometimes obviously quoting verbatim from books he has read.  He asked if I would look up the hymn "Nearer My God To Thee," supposedly played by members of the orchestra on the doomed ship as it went down, for the comfort of the passengers as they waited to try to get into lifeboats.  We found a wonderful instrumental version of that song, and we enjoyed listening to it together.

But wait, there's more!  Safety Guy wasn't done talking to me, not by a long shot.  He bent my ear about the life boats, and acts of heroism and cowardice among the passengers.  (We both love the story of the Unsinkable Molly Brown.)  Then he was going on about Bob Ballard visiting the wreck and noting changes to it, and noticing that many items were missing, salvaged by other legal and illegal expeditions.  Time for another computer "fix":  I had him look up images using the search term "Titanic hull plate," to see some of the larger pieces that have been raised from the wreck, and items salvaged during the rescue operation in 1912.  More pictures, more discussion.  Hull plates led to deck doors, a china plate, perfume vials, rivets, a teacup, champagne bottles, a bowler hat, paper money. . . .

It's an ill wind that blows nobody good, as they say.  He may be grounded, but he's making good use of his time overall.  And I'm learning a lot about the Titanic.

Sunday, February 12, 2012

Roller Coaster Week

I'm sorry I haven't been a consistent blogger lately.  I was hit by a wave of depression last week, not a major "down" but a persistent "bleh" mood.  It was a real struggle to keep doing positive things and keep any kind of good attitude.

Many good things happened as I slogged through my days.  I had three days of subbing (8th grade social studies with some of my students from last fall, a day and a half of home economics for jr/sr high, and a half day of Spanish in the high school).  I finished a handful of teddy bears and listed them in my Etsy shop.  I started some more bears, and worked on a drawing.  Meals got made, laundry got tackled, pets got taken care of, and we got to visit friends a couple nights ago.  I even made it to both nights of my fitness class.  Not a bad track record, really.

But it was also a very down week on the Aspergers/13 year old boy front.  Safety Guy had some issues at school (academic and behavioral) that really got to me as I dealt with them.   He had provoked another student verbally, yelled at his teacher, used foul language, and earned a detention for his behavior.  Also, he had been lying to us about getting his homework done, and those chickens came home to roost the same day he had the meltdown.

Crash.  Burn.  Consequences.  More melting down.  Bargaining - no bargain.  Further pyrotechnics.  Resignation.  Turnaround.  Acceptance.   Moving on.

Safety Guy has lost his electronics (except for the MP3 player) for two whole weeks - an eternity in his world.  He protested (loudly).  We told him the time he was grounded needed to be long enough for him to prove to us that he was really changing his behavior and attitude for the better, and consistently doing the homework and turning it in.   He grumped and stewed for a couple days before deciding we were really going to stick to what we had said.  Since then he's been much better.  The past few days he's been very mellow.  He's been reading a lot, and listening to music.  He's even helped with a good attitude when asked to take a hand with household chores.

It was really hard for me to process his choices and behavior this week.   I didn't sleep well for several nights.  We seem to be on an upward trend for now, but I've gotten back in touch with the psychiatrist who reevaluated SG's Aspergers two summers ago.  I'd like a new eval, and a recommendation for a counselor for SG to see regularly.  SG actually requested to see someone besides the school counselors, to get help with his anger issues.  I'm really proud of Safety Guy for recognizing that he NEEDS help, and being able to verbalize exactly what he needs help with.  That's HUGE, and beyond amazing for someone with Aspergers.  Hopefully the doctor will be able to help us.  Stay tuned.

Tuesday, February 7, 2012

Still Not Much Of A Winter - Yet

 My "bird" feeder.  Notice the large number of 
fluffy gray "birds" who are visiting.
And all of the snow on the dead brown - wait, what month is it?

Well, it's still been a very mild winter up here in Central New York.  Mind you, I'm not complaining - I'm enjoying the lack of sub-zero temps, and not having to shovel the driveway.  But it's not something I'm used to at all.  Normally by now we've had well over 60" of snow, and I think we've had less than 12" so far (but lots of rain).  Normally temperatures here would be in the  single digits and teens to twenties, not the high 30s to low 50s.  Right now it feels like mid to late March, not the first week of February.  That may start to change this weekend, but for now it's still unseasonably warm.

A neighbor of ours saw robins in their yard last week.  I've got new columbine foliage growing in the garden.  Yesterday I saw one of the high school sports teams out running, in shorts and t-shirts, and some of them were not wearing shirts at all.  HERE IN CNY, ON FEBRUARY 6TH.  Un-stinkin'-believable.

 "Winter" sowing, 2012 - notice all the snow on the ground. . . .

But, I decided I'd better get busy winter sowing or some seeds wouldn't have time to stratify (go through enough cycles of freeze/thaw to prompt germination) before spring really arrives.  I'm glad I didn't do it earlier, because I'm sure many things would have sprouted and then been crisped by low temps, which are sure to arrive at some point soon.  I hauled out my potting soil, seeds, and various recycled containers last week and got busy.  Poppies, day lilies, phlox, pak choi, amaranth, sunflowers, cosmos, rudbeckia - all sorts of annual and perennial lovelies got planted.  I'll do the tender annuals (tomatoes, peppers, zinnias, etc.) in a few weeks.  I need to save up more containers - I used up my stash.

 Princess Yakyak's teddy bear, from a pattern she found online 
and modified herself.

I've been teaching Princess Yakyak some sewing skills lately, by hand and using the sewing machine.  She's made some small items, like a simple teddy bear and little 4-patch pillows, and a drawstring bag, with a little help.  Today she's at a friend's house a few houses down, and they've spent the whole afternoon sewing.  (It was a half day of school for the K-6 students.)  I just talked to her friend's mother, and they've been quiet and occupied for over 4 hours now - amazing.  I'll be interested to see what she brings home.  I'm glad they're having fun.

Thursday, February 2, 2012

Life in the Slow Lane

This week has been slow on the subbing front - just one day, and a half day on the schedule for tomorrow.  It will mean an itty bitty paycheck, but I'm enjoying the time to catch up on stuff around the house, and the time to relax a little.  Time to think, and time to work on some art.  Time to sit with a cat on my lap.  Time to pray.  Thank you, Lord, for the blessing of time to spend and invest.

I've got a handful of things to list in my Etsy shop - 4 ACEOs, and a painting.  Hopefully I can get those photos edited and the listings uploaded later today.  I tried to work on some drawings and bears earlier this week, and I had very little focus, so I set it aside.  Sometimes creating art means knowing when to STOP.  Some days I have "it" (the focus and inspiration and time all come together and something good happens), and some days I just don't.  I can always tell when I don't have what it takes to work well, within minutes of picking up a pen or needle, and I've learned it's best then to just set the project aside for later.

 Red Sky At Night, acrylic on art board, 11" x 14", 2011-12

I might bake some bread today.  (I mentioned that idea to Princess Yakyak this morning, much to her delight and enthusiasm.)  I might also throw in a batch of biscotti.  There's nothing on my "to do" list today except to get Safety Guy to wrestling practice tonight, so I hope to get some things done in a leisurely fashion.  Maybe today can be the antidote to all the hormone drama from earlier this week.