All in a Day's Quirks

I’m not an avid tv watcher, I’ve never really been into daily/weekly programs.  A friend recommended the show “Parenthood”, saying it had an Asperger’s kid on it.  I started watching in the fall, and now I’m addicted.  The series does a pretty decent job of portraying some of the quirks, realities and needs of spectrum kids, and has done wonders for Autism Awareness.   Max’s character has Asperger’s, the mildest and highest functioning end of the autism spectrum.  The issues and scenes with Max are the brightest snapshot of life on the autism spectrum…the majority of autistic kids are not this verbal, physically capable, or socially interactive.  Of course “mild” makes sense for television, and nonetheless the autism community is grateful for this breakthrough in a mainstream venue to educate and raise public awareness and (hopefully) tolerance and understanding. 

This week’s show was a masterpiece though – totally nailed autism  on several levels.  If you missed it, here’s the episode, spoiler editorial comments after…

Spoiler alert!

Nailed it, right?  Aspie Max has a meltdown when his aide changes his routine.  He ramps up to his meltdown: as I watch, I feel the same knot in my stomach, feel my shoulders tense as if I’m watching the interaction with my G and someone in the family.  I want to say, “Hey, it’s not worth a meltdown!  Give him the silly stickers!”,  or rush in to try to diffuse the situation with Max while still keeping the rules in place. 

Autism parenting is a balancing act, minute-by-minute coping decisions: holding fast to a new lesson or breaking down to save the remainder of the day.  So many factors enter into each decision:  my brain processes with the super sonic speed of a trauma unit worker, assessing the plans for the day and how they may be affected by one simple, often mundane decision which could upset the house of cards…and everyone’s whole day.  As a caretaker to 3 kids, a husband, home, work, homework, sports, laundry, learning, advocacy, etc., these choices – and how they’ll affect everyone’s needs, moods and schedules -are a daily dilemma.   There’s nothing worse than feeling everyone’s disappointment or displeasure because you HAD TO prove your point over a silly, seemingly inconsequential matter.  But, as our experience has shown us, those matters ARE the big things for our spectrum kiddos.  I compare it to parenting a 2 year old: sometimes it’s easier to roll with it than to cause a public scene, hold up the rest of the family, or deal with another drama.  Yet if I give in, will he expect me to cave next time?  Am I teaching him that if he protests too much he can get his way?  It’s hard to know with autistic kids.  How much is in their control vs. out of control.  I don’t think G “works me” like a typical child, or 2 year old.  When he has a meltdown, he legitimately can’t get past it if I don’t diffuse the situation in time.  He spirals out of control and it becomes fight-or-flight for him.

Some experts direct us to hold our spectrum kids to the same high standards as our typical kids. We try.  Still others believe that our kids don’t do these things on purpose, they have no control over their exploding reactions and  confusing emotions - it’s their sensory system working overtime.  The inward struggle goes like this: I can’t let him walk away without putting his game away.  I usually try my whole bag of tricks, rewards, bribery before it reaches meltdown stage.  But sometimes he flies into a full blown rage/tantrum right away for no reason.  Sometimes I’m tired or running late and though I know it won’t help long term, I simply have to let it go.  If I have willing family members, we tag team, and relieve each other when the other team member gets worn out.  I’ve learned to push G to a certain point, take a break and revisit it when he’s chilled a bit.  If time permits, if the situation allows.  Obviously if there’s imminent danger or consequences, it has to happen whether he takes action or I have to.

In this episode, Max flies into a shouting, fight-or-flight rage, sweeping books, toys, and throwing items helter-skelter in his path.  His outburst takes his aide by complete surprise, his abrupt change of demeanor, and she cries in frustration and shock.  As a parent in this situation, you feel an even deeper sense of failure, worry, helplessness, anger, sadness.  We take their disruptive behaviors on as a reflection of ourselves and our parenting ability.  This is true particularly with high functioning kiddo, because they may appear typical in some areas, spoiled or naughty when they erupt.  We live with this child always; at times we feel we’re ultimately responsible for his every mood, every behavior, every impulse.  Whilst the aide closes the door on our child after 30 minutes, 50 minutes, 2 hours (if you’re lucky enough to have an aide or therapist, etc.); we’re left surveying the wreckage and trying to figure out how the rest of our day’s plans will proceed with a freaked out, angry, sour family.  Because also like a 2 year old, the harder we try not to let it bother us, ignore or move away from the situation - the harder G instinctively pushes to keep it in our face.  G increases his volume, pitch, throwing, hitting, screaming, planting himself in one spot and rubber-legging it or stiff bodied if we try to physically pick up/move him.  It takes a conscious, sometimes grueling effort to remember that this is not personal, this is the autism we’re battling with, not the child.  The team approach works best for us, relieving each other when one of us gets too frustrated.  And humor, lots and lots of humor + hugs. 

via http://headovmetal.posterous.com/tantrum-yoga-positions-elephant-journal

Also notable is the episode’s portrayal of an adult Asperger’s man…bravo for opening this can of worry that autism parents fret over!   I knew the man was on the spectrum right from the first moment (as I’m sure writers wanted us to), but Adam and Kristina took awhile to discover that the birthday party entertainer they interviewed was Aspie like Max, thinking the man simply moody or strange for his odd  behaviors (such as taking a shower when he went t use the restroom – love it!).  They struggle with the morality of hiring/not hiring the man who has a lengthy list of rigid rules and compliance issues for his bug performance.  They worry about their own son getting turned down for a job someday because of his Asperger’s – making the decision weighty and personal.  Ultimately Max decides for them, his love for bugs win out over doubt.

http://www.nbc.cm/parenthood/photos/amazing-andy-and-his-wonderful-world-of-bugs

The best scene was when Adam gives the check to Amazing Andy the Bug Man after Max’s party (after last commercial break on video).  Adam looks around at the bugs, gear, studies the Aspie, then awkwardly asks, “Are you happy with your job, your life, what you do?”  After getting no response, continues, “Are you happy?”

“Yes, sometimes,” Amazing Andy shrugs, then turns it around on Adam, “Are you happy?”

Adam pauses, smirks as he realizes the irony of the question, the meaning, “Yes.  Sometimes.” 

That’s all we can hope for.  We strive to make our spectrum kids lives full and perfect; but as multi-faceted, stressed, beat down, worn out adults, we’re all happy (just) “sometimes”.  It’s universal.

Thank you “Parenthood” for raising Autism Awareness: for opening a window for others to view our reality, for shining a mirror to parents of kiddos on the spectrum, for showing us in our isolation that we are not alone, for helping us to come to grips with our challenges, for allowing us see humor, hope and enlightenment in our struggles.  “Parenthood” – the tv series and the privilege – is Ausome! 

 

OCD.  UGH!  G was never too bad with the routine aspect of autism. He was always too busy to focus.  Recently I’ve taken control of his ADHD: diagnosis, research, doctors, advice, and finally experimenting with meds until we’re at a happy maintenance level.  Strangely, his autistic behaviors are even more pronounced now.  Maybe we’re just able to notice more easily because he isn’t running at 100 MPH all day.  Maybe he’s able to focus better and is stimming on different things like routine instead of motion.  As always, he keeps us guessing and keeps us on our toes.

Last week we were late to catch the school bus one day.  The bus driver explained that someone had cancelled so she was early.  G was frantic and unfortunately, so was I.  I ran after him with his snack that I’d retrieved – always something getting lost in the out-the-door bustle.  The next day we had sub-zero wind chills, so I waited just a few minutes longer than I usually would to avoid freezing.  We’re always out early, and the bus is always late (according to the posted times).   Again, it was there 5 minutes early, so we had to run, over ice, jacket unzipped, me in  shirtsleeves carrying G’s backpack.  I got smart the next day and was there early – in the car - it was 10 minutes late.  Next day, 8 minutes early, we weren’t even watching for it yet.  Yikes!  This rollercoaster had me flummoxed, I can’t imagine how he got through his school days.

G looked out the window all weekend, watching for his big yellow bus.  I kept telling him it was the weekend, and not to worry.  He’d gather his backpack, put on his gear and cry if he couldn’t find gloves or boots, panicked.  I showed him the calendar.  Gave him lots of hugs.  My heart just broke. 

This morning he woke up and got dressed for school immediately, this boy of mine who loves to hang out in his jammies or shirtless all morning.  Every 15 minutes he announced, “I’m going to check for the bus.”  We had 4.5 hours to wait.  It was a reeeeaaaally long morning.  We played games and lots of distracting activities.   So finally we got ready very early and went outside to wait.  It was windy and not so comfortable to wait, but I dared not go in to get the car – we might miss the bus pulling up and send G into a panic state.  So, the bus showed up about 1 minute late…with a DIFFERENT DRIVER!  Eek - another change!  I suppose the only way to control these things is to drive him myself.  I think I’ll have him wear a watch, we’ll use his calendar.  I’ll give him the times on a card to look at showing a 15 minute range of when the bus might come.  Maybe I’ll find a timer app so that he can stim by checking it as often as he likes instead of running to the window and gathering his gear.  I’m thankful for the melting snow and promise of spring when we can play outside comfortably and distractingly until the bus arrives. 

And so we enter a new phase of this journey.  No roadmap, no GPS, no pre-plan.  We can do it, we must.  G’s attention and behavior is so markedly changed that he’s making huge strides in all areas.  Good thing, because he’s needed those huge strides to run to catch the bus lately…  

Yes.  Yes I am.   So is the best Super Bowl spot of the year.
Did you catch this Super Bowl 2011 commercial from Chrysler?

Loooooonnnnnnnnnnnnnnnnnng 2-minute spot during Super Bowl: first ever.  I’d love to see the price tag on that.  I’m sure it’ll be in the ad rags soon enough. 
The question is: will it do the job? 
Do non-Detroiters like it?  Are viewers motivated to buy a car?  Viewers feel pride/status about Chrysler products?  Want to book a visit to Detroit?  To listen to Eminem?  Hopefully it did it all.  I know that my Facebook feed is lit up with fellow Detroiters and advertising professionals loving it up.   
Outstanding.  Thanks, Chrysler. Detroit is desperate for positive PR and a morale boost.  Bravo!  Sell cars.\ 
Now lose yourself in images from the D...



Feeling the love?  Go get ‘em Detroit!
And sure, I’m not as cool as Eminem, but I’m rocking my Chrysler mama-van something fierce. 

 

As an adoptive parent, I spend a copious amount of time worrying and wondering about how to approach my children with the fragile subject of their adoptions.   Adoption’s not a topic that surfaces much, but I like to worry and prepare.  When they were tots, I researched and bought the best preschool books on the topic and began reading and talking to them, hoping that if the words were familiar, the emotional impact would be easier to bear.  Naturally kids reach a point in their lives where they’ll  feel confused, realize that they are not like other kids, and question why their birth parents “gave them away”.   Oh, how I hate that phrase that people like to use.

My children never asked much about the subject, even when I’d read or talk about it with them .  When they “got it” was a heartbreaking moment.  My husband and I tried many years of fertility therapies and methods to no avail, and finally I was told one too many times that I’d never have a baby.  We wanted children and the decision to adopt was easy to make.  So we went about the involved process.  Enter adorable N…we were so happy with our first adoption experience that we drained the entire retirement fund for our daughter, sweet gorgeous M. 

As the saying goes,

“We’ll take 2, they’re small”. 

Finally - we were a  complete package, 1 boy, 1 girl – a happy family.  5 years later, the impossible occurred: I became pregnant.  During my pregnancy, as all prospective moms do, I’d feel a little kick and tell about it.  One day this happened and N looked up at me and asked, “Wow Mom, did I do that when I was in your tummy?” 

Yikes.  My tummy came up to my throat as I fought back tears to explain that he was in another mom’s tummy, his Birth Mom.  I pulled M into the room and explained the adoption process, told them their birth stories, answered any questions and followed up for a couple of days.  Near the end of my pregnancy once again, N asked me if he kicked my ribs like the baby was doing.  I hesitated (quite possibly with a sharp intake of breath), and he corrected himself, “Oh that’s right, I was in another mom’s tummy, not yours, right?”  And once again we had “the adoption talk”.

Every so often over the years the subject comes up, and I respond with frank honest answers, trying to shield as much life reality as I can, and boost their confidence with the sentiment that we are so very lucky to have them in our family.  I stay with a consistent explanation, but I’ve always known that sooner or later it wouldn’t be enough, that I’d have to dig deeper, go into areas beyond my and their comfort zone.  Little did I know today was the day.

Photo Credit: http://www.cafepress.com/+we_support_adoption_thermos_bottle_12_o,481332076

TGIF, such a crazy busy week that I stopped for McDonald’s for the kids after Tae Kwon Do.  My husband was picking up a nice spicy dinner that the kids wouldn’t like, so I waited for him and checked my Facebook while the kids ate their McHappy Meals.  I was in the midst of chatting simultaneously with a friend and my cousin when something perked up my ears and made me pause.  I quickly signed off.  G said to big brother N, “Did you like to eat cheeseburgers when you were in Mom’s tummy?”  I’m amazed that G remembered: a few days ago G randomly told me he liked fruit, so I told him that when he was in my tummy he made me want to eat lots of it too. 

N replied, “No G, I wasn’t in Mom’s tummy.  I was in another mom’s tummy.  I’m from __ and I was adopted.”  This, their discussion over cheeseburgers and shakes, while I Fb-ed.  What?  I casually said, “What are you guys talking about?” closing my laptop. 

“Just that me and M are adopted, and didn’t grow inside your tummy like he did.  Do you know their names?”, N asked.  “Whose names?”  I asked, startled by this new in-depth curiosity.  “Our parents.”  Ouch.

M asked, “Do I have any stepbrothers?” 

Super yikes, the dreaded question.  I said, “Hold on, hold on, come and sit and let’s talk.”  I was never so grateful for a Happy Meal toy as I was for the next 10 minutes as G played while I struggled through this emotional discussion with my precious, vulnerable little souls.  I frankly told them that I didn’t know their birthparent’s names and that I didn’t have much information besides medical information about the birth parents and their births.  I explained that they could try to locate their biological parents when they turn 18, and I completely understand and support that curiosity. 

Next I asked M why she asked if she had stepbrothers.  She shrugged, “I don’t know, I just wondered.  But probably not, because if they got rid of me, they probably don’t want any other kids.”  She said it offhand, but I could see the emotion in her expression. 

These questions and their instantaneous popping up told me that N and M had been thinking about these things, possibly talking them over with each other - wondering, worrying, feeling pain.  My brain was swirling, this was a moment I’d feared.

Red Alert! 

Emergency Mom Power Skills needed!

Don’t fail me now!

I’ve tried to avoid exposing my kids to certain world/life realities.  But now I decided to share a very horrid practice/concept with them so that they could get the full impact of how wonderful Adoption is, how sacred life is.   

I explained Abortion.  In basic terms.   

I started with my standard talk about “the why” of adoption placement – the talk they’ve heard countless times).   I told them that sometimes girls/women get pregnant and can’t keep their babies because they’re poor, too young, or unable to take care of them for some reason, etc.

“But……..sometimes women pay to have their tiny babies killed inside them.”  Their eyes got wide with the horror.  Harsh. 

So I continued quickly,

“Your birth mothers were very strong.  They could have taken a different path and had an abortion and been finished with it.  But instead, they thought about what was best for you, their babies. 

Your birthmother(s):

didn’t ‘get rid of you’, she ‘gave you life’.

She gave you the greatest GIFT: of LIFE. 

She gave us the greatest GIFT: of YOU. 

Your birth mothers felt you inside of them, took care of their growing baby, worried and made the hard decision to give you a better life than they could give you.  They probably cried over the decision, and maybe they still do when they think about their child/you.  But, they wanted you to have a good, happy life.   Daddy and I hope that we’re giving you that happy life.  They gave us a special job of doing that for you, their birth babies.  But from the moment we met you, you were our babies.  We fell in love with you and we’ll love you forever.  We are so blessed to have you in our family.”   

Photo Credit: http://www.cafepress.com/+gift_of_life_journal,46996763

OMG.  I must say I felt pretty relieved and proud of the way I handled a spontaneous panic mama-on-the-spot situation.  I hope that I can continue to proactively meet their questions honestly; to offer enough comfort to meet their growing insecurities, curiosities and difficulties with this complex, emotional issue.  I hope that I’ll catch these little comments and stop their hurt from spinning out of control. I hope that I can continue to keep an objective eye, to understand the natural tendency to “want to know”.  Who wouldn’t?  I wish I knew their birth parent’s stories, for my own knowledge.   God has granted me love and the greatest gifts of these incredible children.  Thanks dear God for showing me the wisdom tonight to comfort my children.

Maybe it’s time to research more books on the subject so I can prepare for the next round.

Photo Credit: http://www.cafepress.com/+not_of_my_flesh_keepsake_box,43033066

Photo Credit: http://www.zazzle.com/adoption_rocks_tshirt-235054498717742952

http://www.rollingstone.com/music/photos/the-white-stripes-under-great-white-northern-lights-20100519/seeing-red-72217731

I was sad but not surprised to hear disappointing news from Detroit this week.  Our famed music city lost another band, the gritty-rocking-punk- bluesy White Stripes.  The band of 2 officially broke up with a sweet parting letter to their fans (see 1st freep link below).  I gave the band their due mourning: I enjoyed reading heartfelt articles, viewing stunning photos and watching loud and sharp-twang tunes.  This talented man has earned many kudos for bringing a new style to rock.  Armed with a meager budget plus youthful mettle and pluck, he made a name for himself – lauded as one of the top guitar players in the world.  Ever! 

In recent years, Jack White’s moved on to other projects, diverse bands, up-tempo locales.  He’s far from finished showing us his stripes.  Rock on, show us your spunk, Detroit Man.

Read this retrospective:

http://www.freep.com/article/20110202/ENT04/110202042/White-Stripes-go-out-top

Live this author’s lively DIA concert experience:

http://www.freep.com/article/20110202/ENT04/110202060

If you haven’t watched the rock-u-mentary “This Might Get Loud”, do.  It’s a fascinating view into the influences of 3 legendary guitarists of our time: Jimmy Page from the 70’s, The Edge from the 80’s, Jack White from the 90’s.  They’re all still kicking it out, and teaching each other their styles. 

Even if you don’t like Jack White’s style, after watching “It Might Get Loud'” you’ll understand his fame and unique mark on rock/guitar culture.  My husband isn’t a punk-garage music fan and he “got it”.   He was most impressed by the fervor which Jack attacked his guitar during a concert - so hard his fingers bleed, and he kept jamming.  That my friends, is dedication to a craft. 

Loving the swanky look.    Photo credit: Autumn de Wilde

Photo features from Detroit: http://www.freep.com/apps/pbcs.dll/gallery?Avis=C4&Dato=20110202&Kategori=ENT&Lopenr=102020804&Ref=PH

Rolling Stone Photo photo-spective:

http://www.rollingstone.com/music/photos/the-white-stripes-under-great-white-northern-lights-20100519/suiting-up-59843237

And another, highlighting his varied “guises”:

http://www.rollingstone.com/music/photos/12-shades-of-white-the-many-guises-of-jack-white-20090313/2010-0779586

Good wiki-views of Jack’s colorful background, music and accolades:

http://en.wikipedia.org/wiki/Jack_White_(musician)

http://en.wikipedia.org/wiki/The_White_Stripes

Stop!  Do you have an iPad or iTouch?

Download and activate the "Find my iTouch/iPad" app. This smart app finds idevices on a map, sounds alarm, displays a customizable message even when screen is locked, and can wipe personal info should it be lost for good. This nifty app can be activated on older iTouch models if you have a newer device activated.

Too late for me – we lost G's.     Maybe not too late for you!

Find my iTouch:
http://www.apple.com/ipodtouch/features/find-my-ipodtouch.html
Find my iTouch older models (pre- 4G)
http://www.lifehacker.com.au/2010/11/how-to-use-find-my-iphone-for-free-on-iphone-3gs-older-devices/
Find my iPad:
http://www.apple.com/ipad/features/find-my-ipad.html
Easy Setup Instructions
http://www.apple.com/ipodtouch/find-my-ipodtouch-setup/
http://www.apple.com/ipad/find-my-ipad-setup/

My family has searched the house and cars at least 50 times for G’s iTouch (was mine once upon a time ).  I never lose big item$!  We always stored it in the same spot, we charged it when not in use.   I had over 100 apps for G on it which I’ll have to re-purchase if/when I get another one.  I read about all these cool new apps and I’m just sick about losing ours.  I attended an autism friendly app presentation tonight and now I’m really itching for G to try them.  I love to watch him discover features and see the delight on his face.  My daughter got a new 4G iTouch for Christmas, so if I’d known about this app, I could have enabled it on his 2G iTouch.  A day late (several) and $1 short ($225)...lol.  I’ll be activating it on hers first thing in the morning.
 
I hope we can find it, I’m not giving up!  Send good karma, send prayers, send the patron saint of lost items (is there one?), an angel, good vibes, psychic insights, or just plain old luck.   

Download it! 
  
Do it, NOW!



*Note: After 3+ weeks,
we found G's lost itouch.
S$$$ooooo relieved!
I'm buying a neon bright case and activating Find My iTouch!

A couple of nights ago, my little G came downstairs a full hour after I put him to bed.  He sat on the couch for a couple of minutes, then came to my chair to climb into my lap. I felt his head and discovered he was a bit warm, he said he had a headache and didn't feel good.  Unfortunately, Motrin makes him hyped up, and Tylenol doesn't work at all for him.  I lightly massaged his little noggin, hoping to take away his headache and relax him into sleep.  Like a doggie, if I stopped G would grab my hand and direct it to his forehead.  If I moved my hand to his hair or neck, he'd re-direct it back to his aching forehead.  So adorable.  There he stayed for about an hour, and may have stayed longer, but I needed to go to the restroom.  Instead of bed, he wanted to sleep on the couch and wanted me to sleep on the other couch and stay close to him. 

What was unusual about this scenario is that G doesn't usually seek out cuddles, physical affection or sitting on our laps. Occasionally when I read a book to him he'll lean his arm on my leg. He lets me and the rest of our family hug him, but pulls away if it lasts too long or if we try to talk and hug simultaneously (too much sensory input is my best guess). When he gets hurt, if he feels it (the big IF), he will come to me for comfort, but only briefly.  His headache must have been really horrible for him to a) feel it  b) seek comfort  c) continue to want the closeness.   

He fell asleep while I watched a movie and re-awoke when I was making up the neighboring couch to sleep in.  I massaged his forehead again for a few minutes.  A memory came flooding back: I stopped showering affection on G a couple of years ago because he used to order me, "Go away now Mom," in a direct tone.  Ouch!   That hurt was difficult to bear.  Quick hot tears and a lumpy throat befell me each time.  I finally quit bestowing affection lasting longer than 5-10 seconds or so, and take care to talk quietly, no laughing.  Just a quick quiet hug before he twists out of it.  It just came with the autism package - nothing personal, I told myself.  I wonder what parent wouldn't take it personal.  I need those parent-child bonding moments too.

Later when I was nearly asleep G vomited and cried, I comforted him.  Well, that explained his seeking comfort and feeling needy.  He didn't get sick again and felt fine the next morning.

It's strange to realize that I'm missing out on a basic loving practice with G.  I take affection for granted with my older 2 children, a parent-child bonding which I still enjoy with my M, who loves to sit on my lap to cuddle.  My older son will surprise me with a random great big bear hug.  Naturally, he's growing away from affection like other tween boys.  I never really think about G's lack of cuddling any more, until he seeks it out for some odd reason - usually sickness or extreme tiredness.  I steal my kisses and hugs when I can as he zooms by. 

But lo and behold, little G came to me and curled up in my lap again...2 nights later.  I asked him if he felt sick, alarmed.  Nope!  After a moment he got up and I figured that was it, the typical 10 seconds, then back up and moving around.  Instead he lifted my throw blanket to climb under with me, sitting in my lap.  Granted - he talked a blue streak, completely driving my daughter crazy as we were trying to catch some family tv time before bed. 

But I was overjoyed!  

I'm not holding my breath that he'll suddenly become a snuggle bug, but I sure cherished every second while he did.




Betsey Johnson Izzy http://www.zappos.com/ product/7754877/color/12398

 
New Year's Resolution?
The best exercise
for the heart
is bending down
to help someone up. ♥


 ..then 30+ mins.

cardio-dancing

with joy!


Love these!  (unfortunately, my back wouldn't!) Velvet Angels Falcon http://www.zappos.com/ velvet-angels-falcon-purple- napa-suede-tortoise

Before you begin any new exercise program, be sure to consult your
dancing shoes...


Reminiscent of my beautiful Bridesmaids shoes. My all-time favorite electric Periwinkle hue on my all-time favorite ladies! http://www.zappos.com/ /pour-la-victoire- bridal-and-evening- stella-purple-satin

   
 

Elegant! RSVP Ivana http://www.zappos.com/ rsvp-ivana-purple-satin

 

Sofft Reyna http://www.zappos.com/ sofft-reyna-violet-patent

  



Naughty Monkey Turn Out http://www.zappos.com/naughty-monkey-turn-out-purple

  


Dr. Martens http://www.zappos.com/dr-martens-1460-purple-techtuff-express

 

Dansko Professional http://www.zappos.com/product/7664646/color/245194

Ugg Cayha http://www.zappos.com/ugg-cayha-deep-cobalt-cotton

Sadly, this are the type of footwear I wear most often these days...
all the better to shuffle with!

SmartDogs http://www.zappos.com/smartdogs-harmony-lavender-deersuede

 




U2: success... The Sweetest Thing

My husband and I were discussing upcoming plans at the dinner table. 
I mentioned my plans for a Ladie's Night with some high school friends in a few weeks. 

I said excitedly,
"We're going out for dinner and then dancing - to an 80's band!  Doesn't that sound fun?" 

My 11 year old son burst the bubble of my schoolgirl excitement with,
"Wow, really?  They're still alive?"

I gotta say...not only are these bands still jamming out some primo tunes, but they're looking better than ever...or maybe my eyes and tastes are adjusting as I mature...lol.



David Byrne: Still Burning Down the House



Sting: still Mad About You



REM: Pop Song 89...80's defined





Aerosmith: Sa-weeeeeet Emoooootion!

  Santana 1969, I was 5!

Santana Soul Sacrafice 2010 Note Screen Image is Woodstock Concert


Bon Jovi Detroit 2010


Elvis Costello White House 2010


Peter Gabriel

The Spirit of Faith http://www.art.com/products/p12382500

My heart is warmed by a few miraculous events in the last year, acts of grace which surprised and touched my family.  One day last fall, I found a card in the stack of mail.  It had no return address, which made me curious - such a rarity.  I opened it, inside was a funny inspirational card about coping.  The type of card that I used to send when I had time to be a better friend.  That was enough to get my tears rolling.  But, also enclosed were two gift cards!  No signature, no clues.  I called my husband crying (he's so used to that, emotional mama that I am).  He had no idea who sent it either and was as incredulous as I.  I put out a message on my Facebook, asking who my anonymous angel was...nothing.  I called a few likely suspects, still no answers.  I compared handwriting from other cards and mail, even Christmas cards when they came.  Now more than 3 months later, I still don't know who my secret angel is or if they saw, heard about or felt my huge thank you.  I'd love to hug them and express my gratitude.  They may never know how meaningful their action was to me, my family.  They "had me" (bursting with tears and gratitude) at the beautiful card.  The gift cards were unnecessary, as gifts always are.  But of course they were certainly appreciated and used wisely, shopper (Sale-er) extraordinaire that I am.  :)

When I was preparing for G's Independent Education Plan (IEP), I was surrounded by friends who stepped up to the plate to help me gain strength and confidence.  My sweet cousin Coco, a special needs teacher, called me to brainstorm, and she provided answers, research and very welcome hugs.  Trusted friend/G-care sitter Chris and long-time family friends Karen and Chris L. listened to tormented calls and offered comfort and stability.  I located an advocate, a friend from a local mom's group that I was in, and my friend Ellen took my reports and notes, reviewed it all and gave me tasks to be certain that I was prepared.  Armed with a file cabinet full of organized binders and Ellen, we advocated for G.  She evened up my side of the table, gave me confidence and security to fight for my son.  G got services, he prospered.  I'm grateful and impressed by our school professionals too.  As always, my BFF's Linda and Laura were available for counsel 24/7.

When I went public via Facebook about G, a delightful college classmate Susan reached out to me to guide me through the initial shock of autism's diagnosis and confusing maze. She brought me down to earth and let me know that I could do this. There IS life beyond diagnosis. I thank her for her many links, resources, phone calls, notes, kindnesses and a great book. Go Warrior Moms!

I was awestruck again when family friends called to invite my kids on a family adventure 3 days before Christmas.  I said yes immediately, but my heart and brain started racing at the thought of all I had left to do to prepare for the big holiday.  I was completely taken off guard next when the friend next suggested that his family take my 3 kids, including G, so that I could have time to get some things done (had he read my mind?).  :)  I was stunned into silence.  I stammered and told him, "I never get that offer, do you know what you're getting into?"  He said that he and his wife had discussed it and decided that as a family, and with my 2 older kids they felt sure they could handle G.  I told him I had absolute confidence in that, I'd strongly consider it, thanked him about 30 times and hung up, dialing my husband immediately.  Of course we both felt completely secure that this couple could handle G.  They have a beautiful family of polite, smart and kind children who take after their active and fun parents.  Their son is one of  N's best friends, and a rare friend who can "deal" with G effortlessly.   Steve is a baseball coach (my son N was lucky to have him as coach for years) and ski patrol during the winter months.  Julie's a lunch monitor at school and volunteer extraordinaire.  Both are very active in the community, family and friends.  I'll never forget one of my first impressions of this awesome family: for each of their children, they host a pool party after school lets out for the summer after their kindergarten year.  Wow, can you imagine hosting 25-30 five year olds and their parents?  That's beyond brave!  So, their offer was really hard to beat. 



Judging from everyone's demeanor, G's tantrum had been going on for awhile.

Why I said no to a perfectly wonderful opportunity which NEVER comes up...aka: Am I stark-raving mad?  Really, it's only been necessary for G-care a few times.   My husband and I decided years ago to simply skip going out together - we take turns or don't go.  We have great neighborhood babysitters that we trust, but why take a chance that G will do something outrageous?  We don't want to burden a teenager, that's way too much responsibility.   Most often he'll go to his buddy's house to stay with strong, capable Miss Chris, who sometimes gives him bonus Sensory PT.  :)   For a couple of family emergencies the kids have stayed with Aunt Chris, Uncle Greg and their fun crew. :)  We love and trust them and so does G.  I'm pretty sure we've scared off everyone else with our wild child G, which is totally understandable, lol.  :)  We don't expect help and try to save our favors for desperate situations.  I can't offer to help friends much any more, but of course would if needed.  Okay, so you get the picture that we never ask for help, which is why this offer felt like a bonafide miracle.

Sensory Freakout: over-stimulation. G's panicked, in fight or flight mode.

Back to why I said no...It's hard to comprehend unless you live with special needs, but I feel tremendous guilt for the amount of stress that's put upon my 2 older children.  I try hard to shield them from the reality of G's issues: the pain and sadness, extra work, stress and downright ugliness.  But try as we may, they live here.  They experience difficulties kids shouldn't be burdened with, note my frantic calls and research, take up slack if I just can't multi-task enough to cover watching him.  They see me breakdown, have my own meltdowns, get crabby and frustrated.  They chase him when he impulsively runs...everywhere.  They weather his unruly tantrums.  They must rise above the embarrassment that G often causes in public, with their schoolmates, teammates, friends.  They're true team players in our family: they help, they hug, they comfort, they give, they love.  Our family dynamic is entirely G-centric, dependent on the moods and behavior spikes which we don't understand, can't predict, can't control.  I understand that our family dynamic will help them to be more sensitive and accepting.  I see the good traits that this inspires.  But: they deserve THEIR OWN FUN, their own friends, their own time to be away, to relax. 



Another Not-so-Kodak Moment G's not cooperating. Check out N and M's  uncomfortable body language

To that end, My husband and I strive to single out our kids for one on one time with us, so that we get a chance to bond, to connect, to enjoy our own time.  We've been doing this since the kids were tots: when we began to feel the sibling rivalry reach its peak, we'd head out for an afternoon of fun, each of us toting one child with our own plans.  My husband and I value these special times and hope they do too.  I'm thankful this year for the opportunity to connect daily with my 11 year old son since he arrives home an hour before his siblings.  This single hour has been fantastic, even if we just sit across from one another while he does homework and I cook or do the dishes.  He knows I'm here and he can talk to me casually, without fear of distraction or interruptions.  I'm approachable for this sacred hour.




Progression of Meltdown Take 1:  G objects to random annoyance The kids see it coming, disaster's on the horizon. Mom tries to pull it off anyway...



Progression of Meltdown Take 2: Change of scenery G still objects to random annoyance I still try to make everyone laugh, we can do this!




Progression of Meltdown Take 3:  Resistance is futile! Oh well, I'll just crop him out. Poor N had to go sing happy songs at his choir concert.


If G were to join the kids on the outdoor adventure with their friends, the whole day would be completely different, even if G was perfectly well-behaved.  They'd be on constant alert that he'd make an impulsive move and run for it.  They'd be embarrassed if he was clumsy or said the wrong thing.  They're too young to have this stressful nervous undercurrent.  Let them be free for an afternoon!  That, my dear friends Steve and Julie, is more than enough gift for us!  So N and M went on a fun adventure, and I was afforded an afternoon with G to bond during a chaotic week with no schedule and lots of social activities.  Win/Win.  It turns out I made the correct decision.  The next morning my daughter said to me, "Mom, G would have run into the street if he would've come yesterday.  We were by a road and had to do lots of climbing and walking through the snow.  It would've been really hard with him."  This from my patient, easy-going child.  She thought about G and his difficulties even though he wasn't there.  She is tuned into his needs, so much that it follows her around...as it does for me.  That's just too much, it breaks my heart and I wish I could make it easier for the kids.  The afternoon outing was a great gift of freedom to laugh and play with their friends.  Still, my husband and I are floored by this kind, generous offer, we can't stop smiling and feeling great about our friends Steve and Julie.  That's the true meaning of Christmas: an act of giving that's completely unsolicited and selfless, expecting nothing in return.  Bless you, friends!

Passing the candy bowl at the end of each meeting. N tells his favorite part of the meeting, and shares ideas for future meetings. G (in stripes) wanders around checking out costumes and candy.

A few months ago, we were blessed to find a sibling support group for autism families.  After voicing my concerns about the toll G was taking on my fam, I was referred by a friend to SibShops.  http://siblingsupport.org/  I emailed, called and found the leader of our local chapter to be positive, fun, energetic and open.  Going into the first meeting, the kids were nervous and unsure, and I hung out for several minutes when I dropped them off, worried that I'd thrown them into something they weren't ready for, or wouldn't like.  When I came back to pick them up, they lingered and stalled.  They chattered enthusiastically on our way out to the car and the entire way home.  My daughter exclaimed, "Mom, I was having so much fun I didn't want to leave!"  Epic win!!!!  The group opens up the floor to voice concerns, frustrations and challenges that sibs face.  The sibling workshops use team-building and confidence building to make the children more aware, tolerant, more open about autism.  The biggest boon for us: they found out they aren't alone.  My amazed son told me on the ride home, "They asked who got embarrassed with their sibling in public, and EVERYONE raised their hand!  I couldn't believe it!  I guess we aren't alone."  Then he expanded to talk about some of the examples the kids talked about.  Each example was an issue we face and find frustrating, isolating.  This from my "I don't know," child who clams up when I try to talk to him about his troubles.  Double epic win!!!!



Holiday parties: After their brief meeting, SibShop kids make gifts and set up activity stations for their autistic siblings and oversee the fun.

The SibShops program gets N and M thinking and talking.  After each meeting, they raise issues and topics at odd times.  I note how much they think about, how much they're affected by G's challenges.  I'm glad that they have an impartial forum for support to work through these troubles.  No matter how hard my husband and I try to remain impartial, the kids know we have G's needs in mind too and still may feel injustice or bias.  The kids both look forward to their monthly meetings, and during the holidays, ASD sibs were invited to join in the festivities for a portion of the meetings.  This gives my kids more exposure to other ASD kids, their diverse challenges and family dynamics.  G is high functioning, many of the other sibs are not: nonverbal, non-social, in wheelchairs, walkers, unable to care for themselves, etc.  This gives the kids perspectives that are truly priceless.


Lastly notable is my GLORIOUS find of a winner Autism center and SUPPORT Group!  Hallelujah!  I reconnected with an old friend who moved away to another school district (that's how awful ours is rated for obtaining special services) when she learned that her son was autistic a few years ago.  I'd been searching for her, but was disappointed.  The night before G's big "School Diagnosis and Recommendations IEP" last February, a former classmate Julie sent me a recommendation via Facebook to an ASD center I hadn't heard of.  I was surprised to learn that my middle school classmate is an ASD mom too.  I thank Julie so much for her timely referral - a moment in the middle of the night which I truly felt shaken, unsure, lost and ALONE.  I needed hope and a miracle badly.  I opened their website - just before logging off, I noticed my lost friend's name!  Talk about divine intervention!  I emailed my old friend, she sent info, and by the next week I was chatting with her about the center's services.  What a find!

Temple Grandin: Funny, gifted, inspiring, autistic. http://www.templegrandin.com/

I attended an ASD conference last spring and my friend toured me around, introduced me to helpful resources, and invited me to sit with her at the Autism Collaborative Center's http://www.emich.edu/acc/ table with professionals, therapists and key development professionals.  As it turned out, we were seated just one table away from keynote speaker Temple Grandin.  I was able to note her quirky ASD behaviors up close and personal.  What a great opportunity.  The center offers incredible programs and services.  My kids love it when they come along for family events. 
When I started in a support group at ACC in the fall after trying a couple others closer to home, I immediately clicked with the staff, met wonderful parents, and felt open to express myself.  I took advantage of a respite care afternoon together with 2 other ASD moms from my support group.  We went to a crowded art show/sale teeming with people bumping and pushing.  We lingered over a long, conversation-filled lunch.  Either activity would be impossible with our ASD kids, what a delightful treat.  3 hours of worry-free peace - a highlight of my year.  How comforting it was to speak the same language, compare notes and discuss our concerns and triumphs.  I love this wonderful center and the new-found support I've found at long last.  Bonus: I get to see my strong beautiful friend whom I missed when she moved away.  It turns out this can-do woman helped to start ACC from grassroots.  This amazing mom is caring for 3 children on her own.  She manages to find and provide therapies for her challenging autistic son, encourage them all in their education and activities.  She's a bright spot at the center, wears a comforting warm smile and appears relaxed.  Wow - I want her secret!  She's a wealth of knowledge and incredible inspiration.

I've learned that God sends help in rare forms when you truly need it.  The referrals and opportunities appeared when I was desperately in need of a beacon of hope.  The selfless acts renewed my spirit and faith in human kindness.  Someone understands how difficult my family has it right now.  Someone thought about us and took action to help out in some way.  How cool is that?

Thanks to each of you who has touched us and lighted our path...Gratefully paying it forward in any way that I find possible, always do.