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Saturday, June 23, 2012

Airport Etiquette

I haven't been here in awhile due to some health issues but during a brief stint in Florida, I wrote this on a layover.  I hope you enjoy.


Airport Etiquette

What is it about airports that make people think they are almost as anonymous as being their online, invisible selves?  Sitting here at the ever prestigious, Chili’s Too in the Detroit Airport, eating what resembles real huevos rancheros – although they have the rubbery consistency of what I would imagine powdered eggs would be if I’d ever had them – I look up and see four men sitting in a booth, two down from mine.  One man is about 30 years old. "Thirty" has dead fish eyes that don’t blink.  


He unabashedly stares at me. 

I’m attempting to delicately eat these cold, previously melted, cheesed atop Army rationed eggs with cold liquid oozing out of the bottom, soggifying the tortilla underneath.  








I look up.


                                   Thirty’s dead eye stare is piercing my luscious egg experience. 




I give him a not-so-subtle annoyed, yet questioning, look and go back to attempting to figure out how to shovel this in. I’m hungry, my blood sugar is dropping and I need protein.  In the words of a friend, I will eat the crap they give me right now for the sake of sparing my sweet waitress from having to scrape my sorry ass off the floor after fainting and hearing my last pre-conscious words, “pleeeeease….powdered…..eggggggssss…..bllllleeeeeeaaaaahhhhhhh….”

I’m writing, I’m soaking in the Chili’s ambience, I’m forgetting there is a straw in my water. Every time I sip out of my glass I poke myself in the face with it.  I feel the hairs on the back of my neck stand on end.

Yep.

Dead fish eye Thirty is staring at me.  He doesn’t even attempt to look away.  I look behind me because I think to myself, “You are so arrogant.  Thirty is looking out the window behind you. (I’m sitting against a wall)…Maybe there’s a wonderful Monet or Renoir that’s capturing his attention! (It’s hotel art. No one but a sociopath likes hotel art.)  Okay..okay…yes, I want to feel arrogance for a dead eyed, thirty-something, potential, wanna-be/accomplished serial killer…”  If he looked anything like Dexter, 


I’d let him stare at me all day long.  

Dead eyes and all.



Over an hour in the booth, I’m calling folks, writing, facebooking (which I hear is a verb so no grammar police on me and yes, you know. Who. You. Are.), wondering if said ‘food’ will stay in my digestive track,  people watching (yes but not in a creepy way, more like people glancing) and I look over at Thirty.

Really?  I mean, really?  Should I start shoveling in everything on my plate, chew it at sugar rush speed and open my mouth like a 3-year old showing off their pride and joy of how well they can mash it all up?  Hmmm…perhaps stick out my tongue? Nonono, he could take that as flirting… how about some obscene finger gesture?  No, definitely not me. Too obvious.  Oh I know!  Lick my lips suggestively, wink and grab my breasts!! Subtle, gets the point across that he’s the obvious one…yeah, I like it. 
Wait! He’s exiting the booth with his comrades.  Dammit!  No chance to degrade myself today.  Oh well. I have a 4 hour layover. It’s Detroit.  I’m sure there will be plenty more opportunities.

Wednesday, April 4, 2012

World Autism Day

World Autism Day passed us by two days ago.  I felt a myriad of emotions and consciously chose not to write on that day.  I was surprised by how many individual facebook posts I received on my wall by caring friends who reached out to me personally, saying they were wearing blue in honor of the day, in honor of the rascals.  I felt proud that our family had touched the lives of others for the better.

The boys are on spring break and I took them to a park. There were several kids there and they were having a great time playing.  A little boy engaged them to go rolling down a hill with him.  I started talking to this boy's grandmother who was just so incredibly smart, compassionate and sweet.  Come to find out her daughter has twins, almost the same age and with the same names as my rascals ---- BOTH have autism.  How strange is that??  Just like my Rascal #1, her older twin grandson is a savant in language as well.  It was mind boggling the similarities!




As the boys continued to roll down the hill, mesmerizing this wonderful lady and myself with their ability to spin for minutes on end and not vomit ~~ she began to ask me the usual set of questions: what do you think causes autism? why do you think there is such a sharp rise all of a sudden (referring to the new CDC statistics of 1 in 88 kids and 1 in 54 boys since 2006)? What do you attribute autism to? Vaccines? Environmental reasons? Genetics? I was impressed by her knowledge, by her desire to deconstruct this extremely complicated matter and quite frankly, not to be ageist here, but I have met a few senior citizens that was willing to jump into the whole Autism discussion mess.  I have usually attributed it to a generational problem: I do believe, personally, that autism has been around for ages but I also believe due to many reasons, it's risen sharply over the past two decades making it my generation's issue more so than my grandparents issue.

Trust me when I say this:  I AM NOT HERE TO DISCUSS THE CAUSE OF AUTISM. Ok, that is SO out of my system.  I deeply respect and have nothing but love for all y'all who have dedicated their time, energy, money, ideas, etc., to that cause but baby that ain't me.  We all have our place in this journey and that ain't my place.

I know this sounds so hippie drippy and all of that, but I wish I could get all the parents of kids on the spectrum who are struggling in one city for a night... just to connect to one another.


Whether it's for a laugh or a drink, or a good cry... or a hug. Whatever.  The internet has helped so much but it's still not human connection however, I do recognize how it's helped facilitate it.  And without it, our community would be even MORE isolated.

I love our community. I love our kids. I love our parents.  I love our committment, our dedication, our humor, our ability to achieve in the face of adversity time after time after time and especially that of our kids.   I love that we do not take any steps of development for granted. I love that we appreciate the seemingly insignificant as the significance that it truly is.  I love that hearing/experiencing the communication of a single word from our child is forever life changing for the both of us.  I love that we have not settled for our children who are not neurotypical but that we celebrate them for exactly who they are in their equality with their typical peers and siblings.

I love my rascals for their intelligence, their humor, their courage, their bravery, their emotional attachment, their ability to dig deep into their heart and feel deeply, their willingness and/or ability to express in whatever way they can in that moment, what they are thinking and feeling, their ability to be so in tune with their world and that they invite me into it.  Of course there is so much more.... and you'll all hear about it.

Still searching....





Friday, March 23, 2012

Underneath the layers of understanding

The other day I took the rascals to a park.  I had a wonderful window of time where I wasn't in pain and I wanted to take full advantage of that break.  We went to this park down the way from our lake house. The boys love it. There are usually a bunch of kids with their parents. Some cookout; most are playing and there is a varied age range of kids.  I usually find a mom or two to chat with while I'm there.  I have missed taking the boys to the park and this was a treat for all of us.

As soon as we got there, Rascal #1 went to the swings as always and Rascal #2 found a group of kids and threw himself into the middle of them to play.  That, my friends, still astonishes me.  He had his first panic attack at 12 months old in an elevator.  He then very quickly developed severe social anxiety and could not be around more than 2 or 3 people at a time.  By the time he was 4 years old, when we'd go to parks together, if there was a child or more playing, we'd have to find another park that was empty because he'd start to panic.  It was just mortifying for him socially.  Yes, he's been in a school setting since he was 18 months old and it's been great and it's been horrible for him as you can imagine.  The good with the bad.  The one thing about my #2 is that he has always, always, thrown himself at the one thing that scares him half to death.  That child has determination on a level that I don't think I've ever experienced first hand before.  His fortitude, partnered with intervention, therapy, encouragement and the right medication have helped him become this ... social kid..

So back to the park.  One is on the swings, singing his little heart out. The other is with a group of kids.

I go over to my oldest who is swinging and I am talking with him.  There is a Mom with her 2yo daughter next to him.  The little girl is adorable and oblivious to my son.  I look at her and smile. I say to her Mom, "she is so stinkin' cute!!" Her Mom takes one step away from my son and stares straight ahead, not saying a word to me. Immediately I get that feeling in the pit of my stomach that is becoming more and more familiar to me lately.  I give her the benefit of the doubt and I spray paint the painful smile on my face, looking at her typical child.  She is now (the little one) smiling at me.  It's easy to smile back.  "How old are you?" I ask.  She mumbles something and I giggle.  I try to strike up a conversation with her Mom to be polite.  Her Mom blatantly looks at my son up and down as he sings his song backwards and wrenches his head up to the sky; with a very disgusted look on her face.  She rolls her eyes then crosses her arms over her chest and tells her daughter they are done swinging.

I am in tears, I am so angry.  And yes, I am so hurt for him.  Will it be the next time that a child or an adult do this directly to him?  When will that layer of understanding be brought to the surface and my rascal understand fully, what just transpired?  When will that one disgusted look, that comment, that one horrible name bounce off his heart and change him... and I'm not there ....

My younger rascal, in the midst of playing with his group of friends attached himself to the biggest kid of the bunch.  He wasn't the oldest but looked to have grown quicker than the rest. Much like himself.  The one thing about my younger son (ha! I love writing that because he's younger by 2 minutes!!) is that he's very good at presenting like a typical kid at first glance.  He is learning to mimic very well.  He's with neurotypical kids most of the day.  His sense of humor is really quite amazing.  He is profoundly sensitive and in tune.  He's thoughtful and able to act on those emotions appropriately.  When compared to his brother, he "looks" much higher functioning.  To professionals he is obviously autistic but to others not so much, at least at first.  However, he can only mimic so much and for so long.  I was standing near him for awhile, observing his interactions.  He stays quiet around other kids and doesn't talk. He watches.  He runs around and chases them.  He plays tag, that sort of thing.  He's very proud of his interaction --- and he should be!

This bigger kid got everyone together to figure out who was going to be "it" and then they were going to hide and the game would continue.  My youngest followed him and became his shadow.  While observing this process, my son had no idea what was going on.  Then my oldest wanted to play and he ran up and threw himself in the middle of it all.  Two girls were very sweet to him and were trying to explain what was going on, which was just too much for him.  The boys ignored him.  My oldest kept repeating "I want to play".  I tried rallying him to sit so he could play but he gave up and ran back to the swings by himself.  Which made me sad.

Someone was "it" and as everyone fled, knowing the next step, my youngest looked panicked.  He had no idea what to do next.  All the rules had been laid out but because of his processing disorders he couldn't grasp any of them.  So, he shadowed the bigger kid.  He was smiling as he chased him.  :-)  I heard the boy say, "Kid, why are you following me?" My youngest just laughed!  And the kid just shrugged and that was that.  He let my son tag a long.  I thanked God profusely in my words, my heart and with the tears in my eyes.

That innocence won't continue, though.  That layer of understanding for me was torn away that day.  My youngest and I have these soulful talks and have for a couple of years actually.  At least once a day he engages me and will say, "Mama can we talk?" We talk about everything serious to ridiculous and we both love it.  When he was about 4 yo he asked me why his older twin wouldn't play with him or look him in the eye. I told him that their brains were made a little different and that God didn't make mistakes.  So, how his brother's brain was made -- to not like tags like him, to only like foods that were cold like him, and to not look him in the eye like it was hard for him to do, is how God made the both of them and God did that on purpose because they were made perfectly, just how God wanted with all kinds of special gifts.  We problem solved that day on how to get his brother's attention when he didn't respond to questions.  It helped.  We all do that together.  We all need it.

He is aware of the difference he and his brother have.  He tells me when kids are mean to him and his brother.  When he plays "guys" (action figures) with his Daddy, he's always the bad guy beating up others. In reality he is Mr. Follow the Rules.  It's a safe way for him to break out of that and to get that aggression out in a socially acceptable way where he won't get into trouble.  He sees  how other kids are treated who are "different" and it makes him very angry.  We don't use the word "difference" in our house usually.  We say that God makes us all different from one another and how cool that is because who wants the same --- BORING!!

I try not to spend much time in my "future" thoughts of what I know will happen, what is inevitable.  I need to stay in the present with them but when the present includes a Mother who is wretched to my child and she is teaching her child intolerance and hate, those "future" fears become an instant reality.

I was talking to a friend about this and was reminded of something: although there will be many of those mothers, plenty of kids who will be like those mothers on the playground in my rascal's future, there will also be many of those little girls who reached out to my oldest when he wanted to play.  Those little girls immediately stopped being involved in their part of the game to include him. They immediately started engaging him and including him.  My friend pointed this out and I have spent the better part of last night and this morning thinking about that.  So today, my heart is in a much better place.

As always, still searching...


Monday, March 12, 2012

Perseveration

What does a parent do when their baby cannot get something out of their head?  I mean, it's beyond obsession, it's beyond a needle getting stuck in the record (and yes, I just totally aged myself there).  It's a constant, repetitive, never-ending, quest of a question that goes on, and on, and on, and on...without hesitation...with a level of resilience that is quite amazing yet so completely exhausting and overwhelming to the caregiver -- in this instance, his brother, myself and father --- that we are spent.  We walk around on eggshells. We fear saying that one. Simple. Word. That will definitely set off the wave off meltdown once again.  Lately it's been his latest toy obsession: marble run.  He has one and his AI classroom has one.  They are wonderful toys for autistic kids.  Before the marble run it was "Don't Wake Daddy".  Then it was "Pop the Pig".  Any parent of a child with autism knows this double edged sword of OCD - obsessive compulsive disorder.  How do you let them scratch the itch without feeding the beast?

Walking Around On Eggshells....



This is my life. Plain and simple. 


My soul sister and I go to "family breakfast" every Sunday with our families.  She is learning what she can and cannot say around the rascals but of course, this changes week to week, day to day, based on the aforementioned obsession de jour.  Her sweet boyfriend of 11 years asked them about a hockey game they went to with their special ed class and she shot him a look that he could have felt from across the city. "NO! Don't ask about that!" She whispered to him quietly. "I can't even ask about that?" he quietly whispered back, quickly staring at his laptop.  The boys didn't hear or suspect anything and I felt really guilty.  How was he to know that a very sweet, well intentioned question may very well trigger a meltdown in them? (as an aside: They went to this hockey game and it was a terrible sensory experience for them... think of them being in the absolutely loudest, most obnoxious place on the planet with sound coming at them at the highest decibel possible at 100mph for 4 hours straight. And multiply that times 50.  Then you'll get the picture)  

I interjected and asked the boys about the hockey game having a pretty firm grasp on the fact that I didn't think that this particular subject would be the one to push them over the edge... (yeah, ok, it worked out this time but I'll be the first to admit that sentence was totally arrogant and totally hilarious.. "having a pretty firm grasp".... c'mon!!! that's just funny right there!)  I never want to discourage anyone from asking the boys questions, especially people I consider my family, but I also understand there is an ever evolving, ever changing learning curve -- even for me.  

Today the word de jour of meltdown is "marble run" or "mouse trap game".  Who knows what tomorrow could bring and I do not want to find out.  Please God I look forward to the day when there isn't a word, or an object, or an item.... but if that day never comes... we will persevere in the midst of it all. Like always.  

Still Searching....



Thursday, March 8, 2012

Short and Sweet...or not so sweet...haven't decided yet - LOL

I want today to be a grand day...I do..honestly...really...I do...yep... okay, okay. I'm totally talking myself into this spectacularly-wonderful-awesomely-gorgeous-dancing-around-the-effin'-room-glorious-type-of day, right?

*sigh*

They say, it's all in the mind.

They say, it's all in how you look at things.

They say, it's all in your attitude.

I say, it's all about Friday, as in, Tomorrow, with a capital "T".. going out, getting Dressed, make up on, nails done, hair did, feeling like a Woman.

And if that doesn't work?  There is always Irish Whiskey.

Here's to Katy Perry....




Saturday, March 3, 2012

Too full....

So, how does one find the "right" clinical trial?  Seriously, I'm the patient here, right, and yet I'm the one researching all this stuff out trying to navigate myself around a public health system that is absolutely mind boggling.  I feel extraordinarily blessed that I have a clinical background with social work. I don't know how else I'd be faring otherwise.

Maybe I'm in denial.  Yeah. Probably am. I'm probably borrowing some level of imagined confidence to shoot out these emails to places like the NIH --- which, by the way, I imagine as these creepy, varied shades of grey institutionalized buildings from the 1950s where they perform all kinds of terrible experiments on people.  I'm sure it's nothing like that, right?  I'm sure there are at least pictures of daisies or a sad clown or two on the walls by now.

*shudders...*  So...very...creeeepy...


As I sit here and sip my Chai Latte with real whipped creme, thank you very much, I'm attempting to ignore the past week.  Really, the past 3 days to be exact. And I really don't like that. I like treasuring and cherishing every day God has blessed me with.  Honestly?  The last three days have been beyond, beyond... I find myself heavy sighing a lot.  I feel my heart pounding in my chest occasionally.  I'm really on edge tonite (and I'm sure the caffeine will help that tremendously! lol).  Rascal #1 is having severe meltdowns that I haven't seen before and they are completely out of the blue.  I had to take him to the ER today because of the 3 he had today alone, his last one took over 2+ hours with full on escalation, self injury... I called his pediatrician after hours to find out what in the hell I could do and also wanted to reassure that nagging voice in the back of my head that I wasn't overlooking a medical problem that could be triggering all of this mess.  The nurse agreed with me and so off we went.  I was really proud of how calm I stayed. Not that I get worked up like you'd think -- I'm not a yeller, or a panicker, I worry.  That's my niche.  But where I stayed was in his head and thought how tormented he must be in that place and how alone and scared he must feel. There was NO WAY I was leaving him there regardless of  how emotionally drained I felt.  It was nothing compared to his pain and agony.  His poor twin was triggered all over the place, reacting, hiding out, trying to escape it in every facet imaginable.

Today 100% of me hated autism.  I rarely ---rarely -- feel like that.  And it really hurt my heart.

He is asleep, peaceful at last, prayed for intensely, and watched often.  His brother, curled up around him, protectively, both, so very loved.  Their mother.... hmmm....

tonite, I'm not so sure.

Still searching.

Tuesday, February 28, 2012

Grief

The grief that comes with autism is multifaceted.  I just spent an hour and a half in between anger and sadness and frustration and loss.  The rascals are seven now and at times I'm amazed that pieces of this journey get better; they get easier.  And then I'm amazed they they are just as hard and as gut wrenching as they were when they were infants and life was totally unpredictable.

I spoke with their AI teacher today and found out that she "barely sees them all day".  She reported she sees them for maybe 45 minutes in the morning and maybe 30-45 minutes in the afternoon.  I was shocked!  Especially since their IEP states something very different, ohhhh, like they are supposed to be in the AI classroom 75% of the time!  They go to the gen ed class, next door, pretty  much all day.  The last time I had a conversation about them spending more time over there was last spring.

I was diagnosed with a brain tumor in November 2011.  I have named it 'Lil Bastard. I laugh every time I write that no matter the mood I'm in which is a good thing.  On one of the tumor boards I frequent, I decided to bring some levity to it one evening, which it desperately needed. I mean, c'mon, it's a tumor board, it's not exactly Comedy Central.  So I jokingly said I was tired of having the damn thing in my head so I was ready to take it out myself.  And I asked who was willing to join me?  Well, it inspired a hilarious thread invoking the spirit of creative uses for whiskey, pliers and all of our made up names for our tumors.  It may sound dark to those of you who aren't "in the know" - lol - but trust me, it made my night.  

Humor is found is places where sadness and grief is created if you allow it.  In the midst of a double diagnosis in our twins, humor is rampant in our household.  You always hear that people on the spectrum "don't get humor" which is a load!  My youngest twin, Rascal #2 not only "gets" humor, he is phenomenal with humor.

Rascal 2: Dad, can I have some juice?
Dad: Sure, I'll get you some.
Rascal 2: Well then step on it old man!

We are incredibly sarcastic which is really hard to grasp in general for a neurotypical person and most of the time he knows how to deliver it but he does it with apology usually. He's so sensitive to hurting people's feelings.  He's such a love.  And he's only 7 which is totally developmentally appropriate!  Yay!

Grief.  I'm feeling it sharply tonite.  I called for an emergency IEP meeting for the boys.  Because of the tumor I have been taking on every nuance of change that I have seen in them since I've gotten sick.  Which makes perfect sense in my book.  They have been complaining about school, going from loving school to saying they hate going to school.  My red flags went up but they weren't able to communicate anything clearly or specific as to 'why'.  Now I may know a potential reason or at least a contributing factor.  There is nothing worse than trusting people with your kids ---  who have problems communicating (and trust me when I say how grateful I am that my kids CAN communicate what they can) -- and these trusted people do not tell you important pieces of information.  And they break rules/laws in the process.  These are not bad people. I know them. They adore the boys. The care for them.  They are good people. But at the end of the day, they are not raising my boys.  Their dad and I are raising the boys.  

It's a dance.  Allying and asserting and advocating.  I shot off quite an email to the teachers.  It wasn't for show or to ruffle feathers.  I was simply asserting how upset I was over this.  None of them have special needs kids and you can work with them allllllll day long.  You still give them back to someone else at 2:55pm Monday - Friday and they do not call you Mama.  It doesn't minimize your importance but let's keep it in perspective.

Enough for tonite.

Still searching...