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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...

Friday, February 17, 2012

The Power of Words

Words.  


I have spent my life, since the age of two, buried in words. Whether it was a dictionary, an encyclopedia, a novel, a Dick and Jane book, the back of a cereal box, or making a list of words to memorize for school, I have been devoted to words since I was 2 years old.  


I was just bantering on facebook with a fellow Autism Mom who said that her son said that he wanted to watch a movie on Netflix.  He said "movie".  This is huge. Huger than huge. It's monstrously huge. He said the word, "movie".  I understood the enormity of this one single word. This seemingly simple act of speech.  To a parent of a neurotypical kid -- a "normal" kid --  big deal, right? So he said 'movie'? Big whoop! This is so, so big to her. To us.  And yes, "we" own the victory in our community because we love each other and we are family.  When one of us has a victory, we all share in it; if one of us has been injured we all feel the pain.  That's what perceived difference does to a group.  You bond closely and immediately together.  What's interesting though is once you are in the group, it's not about the difference, it's about what makes you similar to one another that bonds you and makes you strong as an allying force.  


Back to my Facebook friend.


Her son speaking the one word: movie.  Such a seemingly small thing in the "normal", everyday world. Not our world.  In our world when our child, or children with autism, is able to concisely tell us exactly what they want through speech, through words, it's a day of celebration.  It's a day of cupcakes, and parties, and banners and tears.  That's the side of autism that I love actually.  I never take those seemingly simple things for granted - ever.  


A few months back Rascal #2 was walking down the stairs.  He's always walked one at a time, stopping at each one with both feet and then taking another step, stopping again, then taking another step, and so on.  His footing is not fluid going up or down the stairs. It's always step, step, stop.  One day, I was behind him as we went downstairs and he just walked fluidly down the steps...one foot after the other... without any thought... right on target developmentally... large motor kicked in... coordination was perfect and he was confidently doing it.  I froze watching him in those 14 steps as tears ran down my face. As they are now as I type this.  As they did when I told his Daddy about it.  He was 6 years old when that happened.  


It hasn't happened since but that's okay because we were so blessed that it happened once. 


I just checked back to her thread about her son and now lots of posts are on there also celebrating her in son's communication.  I'm in tears again.  If you were to walk up to someone on the street and say "a child went to his mom and said 'movie' and a bunch of her friends were cyber high fiving her and wanting to throw a party for him" 99.9% of those people would think we were nuts.  I'm really happy I'm in the .1% that would know immediately why we were partying down.   Today was a hard day for me.  I was hating autism today as much as I was hating my brain tumor and that is saying a lot.  Thank you NeeNee for helping me see the beauty in ASD again.  Big love my friend.  Big hugs to your guy....



Tuesday, February 14, 2012

Smiles on the journey...


Rascal #2 says something to his Grandma. She cannot understand what he is saying and asks  him to repeat it.  Still not understanding what he said, he replies, "It's ok!  I know you don't hear well because you're old."

Rascal #2 asks his Dad for a glass of juice. His Dad tells him he'll get it for him. Rascals #2 replies, "well hop to it old man!"

Rascal #1 loves watching America's Funniest Home Videos.  He watches them daily and comments, "D'oh!!! That's GOTTA hurt!" after every football-to-the-groin he sees.

I ask both boys what they want for their birthday:
Rascal #1:  Pop the Pig
Rascal #2: World domination.

hmmm....


                                                                      VS.







Monday, February 13, 2012


Let me give you the run down on this man.  He was a Special Education Judge in Texas. He was the judge and jury on appeal decisions -- called Due Process -- given to parents who feel that the school district did not hold up their end of the deal with their special needs kid(s).  The family who recorded this judge sleeping during their appeal, had taken 7 years to get to this point.  Seven years.  They allege that the school district failed to acknowledge or address their son's autism who became suicidal as a result.  He had no friends and was bullied mercilessly.  He didn't have any special accomodations in place for him and this boy suffered horribly.

Imagine this scenario for a moment:  a neurotypical child in a regular ed classroom is 10 years old.  But, this child is placed in high school.  This child does not have the developmental capability to socially connect, they are considered "different" from others and an outcast.  They do not understand the work because they process it differently and even navigating the extensive hallways, to get from class to class, seems insurmountable.

Most of us would never allow this - even if the child were a savant -- because it's inappropriate and potentially developmentally damaging.  But as a society we allow this scenario to occur daily with our autistic kids: we put them in classrooms that are not appropriate, expect them to quickly "learn" social cues and teach them through behavioral training. My boys are worthy of an excellent education. My boys are worthy of friends, praise and help, regardless of what that looks like in the academic setting.  My boys deserve to have allies in the academic arena, not individuals like this Judge, who disrespects the family, the child, the child's pain and suffering by falling asleep on the job.  I wonder what he would think if his surgeon fell asleep on the job "just for a few moments" then excused it by saying it was the nurse's responsibility to wake him up during his quad bypass.  It seems ridiculous, right?  Outrageous?  This is what happened to this boy's family.

His Mom recorded this man sleeping.  She and her attorney have figured it was at least through a quarter of the entire hearing.  Did I mention this wasn't his only complaint of sleeping on the job? In 2006, this same Judge fell asleep during another family's Due Process hearing.  They lost which is usually what happens in the end.  This is after parents spend thousands of dollars in the process trying to be heard so that their child is afforded the same education as their neurotypical counterparts.  Many of these kids are already out of school by the time these process hearings are heard or so many years have passed that there has been continued damage being done.

I think about my boys.  I think about their education and their social experiences.  Will they have friends?  Will they be able to connect in a way to their peers that makes it clear and obvious to those other kids?  Are they being taught with dignity and respect?  Are teachers, therapists, parapros following through with their IEP so that they continue to thrive?  My boys have had amazing teachers and good teachers. The one constant that I have seen in their short academic life is that most teachers, even special education teachers, do not know what autism is or how it manifests in each individual child.  So then I fast forward to them being in middle school and their father and I having to fight tooth and nail to get them the services they need, knowing that Rascal #2 may fall through some cracks because he's higher functioning than his twin.

The resources for our families do not exist. The support for our families is minimal at best.  We lose financial stability, friends, family members and marriages because we have to fight so hard for our kids.  They are our focus and our lives and only other parents of autistic kids get that.

So of course, I put myself in this mother's shoes, having to record this Judge sleeping during a fight she has kept going for 7 long, excruciating years to fight for her son.  In the end, the Judge resigned only because he came under fire once the video was posted on youtube.com.  Initially, the school district denied any wrongdoing on his part and said that the allegations of him sleeping were simply not true.  This was after they saw the video. Even after they asked the other witnesses in the room if they saw him sleeping.  They denied any and all responsibility.  Just like they did to this child.

I continue to walk in similar shoes as his Mom: worrying, wondering, fighting, working, struggling to make sure that the boys will reach their highest potential and praying that their father and I aren't the only ones actively fighting for this.


Tuesday, February 7, 2012

Resistance is Futile

Lately, Jacob has been putting up a big fuss about leaving me.  There are lots of reasons for this and I'm normally the calm, understanding, compassionate Mama.

Today was the day from HELL.  Seriously -- blood pressure rising, nail biting, pulling my hair out by the roots, pacing the floor, and obsessively purging anything I could get my hands on -- hellish. Did anything earth shattering happen?  Were my children harmed?  Was someone lying in the hospital with only one arm hanging on by a little thready piece of skin after a badger tried to bite it off?

Did chocolate vanish from the planet forever?


Decidedly, no to all the questions above.  So how does a day get to be this stressful?  First let's begin with a few highlights, shall we?  Woke up incredibly fatigued from this damned tumor.  Fatigue is really bad on some days -- so much so it's very difficult to get out of bed.  The Rascal's father and I had worked out him taking over morning shift on his own (we sync morning routine and it's as smooth as can be) but that was not to be.  A permission slip, for a field trip to a local gym, needed to be filled out.  This is a gym where the Rascals already are members for gymnastics.  Everything is on file there. So in my highly fatigued, blurry eyed state, I sat down to fill out these monsters.  Don't forget with twins everything is times two...even though I've attempted to get away with just writing both of their names on top of different forms just to see if I can get it to fly past the radar.

Permission slips done.  Wait.  Didn't I already fill out permission slips at the beginning of the year to include all field trips?  I did, but perhaps I just signed a permission slip to receive more permission slips.  Everything filled out, signed, blood sample given, the deed to my house and an offer for them to keep my oldest twin all for the sake of some time at a gym they attend weekly.  Ahhhh....good times.

Later after some much needed rest, I bounced out of my oh-so-comfy bed (ok, ok, maybe I didn't bounce... maybe I limped out of my bed, heard my back crack, groaned that groan that only folks over the age of 40 have and muttered something to myself about coffee).  Looked at myself in the mirror and...


AHHHHHHHHHH!  Whoa, ok, grab the counter, shake my head a bit to get the cobwebs outta the 'ol noggin'. Good LAWD this girl needs a dye job and stat!

After coffee, food, and a lot of retracing my steps because I was so preoccupied with the 1453 tasks on my To Do list, I settled in.  I started making phone calls which I'm so not used to anymore.  I much prefer email/text/IM, hell, even yodeling over a mountain top, to calling someone.  After many of those blood pressure raising calls I was able to mark several things off the list.

That is a beautiful thing and I know you know what this Mama is talkin' about.

Then I move onto the side of the list that has in huge block letters, underlined in bold:

GOVERNMENT CRAP
Yes, I know.  Articulate isn't it?  

I continue with disability paperwork which only leads to more calls to the social security office.  I only waited about 6 minutes on hold and found that everything was waiting on someone to essentially look at it and make a decision.  This was after I attempted to get into my online account several times and received an error message that read "Call 1-800- because you need to do more stuff for us.  Well, dude on the phone had no idea why that error message was coming up so I quickly took his word for it that everything was A.Ok.  I'm sure that won't come back to haunt me.  

More online forms, more phone calls - phone is dead now -- recharging phone and I take a much needed break.  After I return from said break, I'm filling out more online forms which now are asking me for a confirmation code from previously said disability application. There's one problem. I don't have a confirmation code. Without  it, I cannot pass go, cannot collect $200 on this new government online form.  

*sigh*

I'm stuck.  Now, with my anxiety creeping up with my blood pressure, I spend the next 40 minutes scouring my house for another form from social security hoping beyond hope that I have a confirmation number on it. After looking through and purging paper after paper (and I swear after I went through this amount of paper I'm glad no one was here because they would've called Hoarders and signed me up) I find the form.  It was the last piece of paper I picked up.  

And.

It didn't have a confirmation number on it.  So now my blood pressure is through the roof, my anxiety is right there egging it on and I'm feeling pretty crazy by now.  The Rascals get home from school.  We have their routine and everyone is happy.  Awhile later their dad wants to take them out to give me some space and Rascals #1 refuses to leave me.  Since my brain tumor diagnosis his anxiety has been high as well.  Between genetic predisposition, Autism and recent health issues on my part, this kid doesn't stand a chance against it. It's the second day in a row that he refuses to leave me even to the point of balling up on the ground and trying to tuck his toes in his mouth so I can't get pants on him.  I'm in tears.  I give up and he stays home which again, am I allowing him to just process anxiety or am I caving in to how he's expressing his anxiety over my health issues?  I suppose it doesn't matter. Bottom line is the same.  So now the guilt starts and I'm in tears again. However, pretty quickly I realize that these tears are calming me down (even though I was a bawling, snotty nosed mess) I can literally feel my blood pressure going down..and my heart rate decreasing... and my body relaxing.  Thank the sweet baby Jesus for this moment!  After the nervous breakdown I felt loads better.  Rascal #1 and I hung out until the rest of the fam came home.  

I did notice that as soon as I started to move around  all my symptoms came back.  Unfriggin'believable. Here I was believing that a good cry was going to solve my problems.  

Kids fed, homework done, teeth brushed, stories read, songs sung and prayers prayed, I fall asleep quicker while snuggling them than I have in months.  

At 2:00pm I vowed to drink a margarita tonite  and I never made one. I think just knowing that refreshing, delicious and intoxicating escapism is awaiting me in my fridge is enough for now.  So now I'm on my bed, where it all began today and it's coming full circle.  Except in this moment, the house is quiet, the phone is charging, no one is contacting me and I'm drifting off slowly.  I wanted to slip into my jacuzzi tonite but that would require energy to get undressed, turn the faucets on and off and then dry off.  I'm tired just thinking about it.  

Tomorrow is a new day.  Perspective will be regained. Smiles will be back on my face and in my heart and hopefully I won't be on my deck, in 21 degrees, trying to calm myself down.  

Signing off for now.....

Searching...

Friday, February 3, 2012

Sleep....

I should be sleeping.  I'm sitting on top of my amazingly cushy bed.  My eyes are heavy lidded. They burn for sleep, to dream... my brain desperately needs to shut down for the day. Oh, but I know my brain -- there is no rest for the wicked!  My brain has been on overdrive alllllll day long and sleep will only delve into the flotsam and jetsam of my subconscious, extrapolating the least interesting and probably most bizarre of pieces and throw them together.

That sentence alone is proof of how badly I need to sleep.

Sleep.

Such a normal thing for our bodies to do.  We need to sleep. We want to sleep. We desire sleep. We crave sleep. We use sleep to avoid other things. We love to sleep as a means to cope.  So many reasons to want/love/need sleep.  In our household, sleep is a fleeting thing.  I tell people I haven't slept through a night in 7 years (since the rascals were born) and they laugh.  Thinking I'm joking.

I'm not.

Ok, I'm exaggerating. To be generous and fair, I have probably slept a total of 10 nights straight through and that does NOT count be anesthetized for surgery -- although I highly recommend that!! That, my friends, is the deep sleep of the Gods!!! Getting up in the middle of the night happens every night, several times a night.  Yet every night when I go to bed, I'm hopeful that "tonite" will be "the" night I'll sleep all night long.

*smiles*

It's anxiety provoking... the act of falling asleep.  I have gone through short periods in the past of avoiding going to sleep at night.  Isn't that crazy?  Well, that fits the bill, though, right?  I need sleep but I can't sleep, which makes me crazy - which makes me need sleep - but I can't sleep - which makes me crazy - which makes me need sleep... you get the picture...

Ok.  As a close friend of mine would say right about now?  "Jenn, you are wayyyy overthinking this."  And another close friend would add, "Now get your ass in bed."

Nite. Nite.

Wednesday, February 1, 2012

Vulnerability.

I was talking to a close friend tonight about how vulnerable it makes me feel to put my writing out for the world to see.  How I purposefully told people, "hey come check out my blog". How I made a concerted effort to write intimate details of my family's life and experience down for all eyes to see, for their spirits to consume and for their brains to process.

Then.

For their fingers to have ample opportunity to type if they felt compelled to do so.  Writing has always been a "go to" exercise for me since I was a young girl.  However, I have not shared it easily.  Sure, if it was some nerdy, abstract, academician -- and yes, I get triple word score for that! -- task, I easily share in that because it's all encompassing-above-the-neck-cerebral-showing-off-my-ever-stretching-far-reaching-love-to-keep-learning-I-feel-blessed-with-intellect.

Or.

If I were in the front of a course I was teaching at the university. Whether it be history of social work, methodology for graduate students, or ethics I would confidently speak on and on with ease, head held high, chest out, with no hesitation.

But.

This is so different.  However. Back to the conversation I had with my close friend.  We talked about how important it was for me to connect with other autism warrior parents.  For a parent to read  a blogpost and say "YES!" in agreement and be able to comment, to copy my link and send it to a friend or a group. I truly want to help other people, I do.

Ok.

So this is FAR enough of all this serious stuff.  Way too cerebral right now!

Earlier we are in the middle of bedtime routine.  Rascal says to his daddy, "Ewwww! You STINK!"

Gotta love honesty from a child! Rascal #2, their Dad and I just about died laughing. Everything in our house is about body functions and I hear that's normal for boys... I also hear that never, ever, ever changes.

Did I mention it never, ever, ever changes?   So, everyone is stinky, even out of the shower. We are all "funky", full of the funk, so stank, peeeeeyoooou stinky with exaggerated hand movements or complete with pretend but highly exaggerated and an extremely, dramatic fainting spell. If I'm lucky, I may get some self induced, pretend choking in there for effect.  But I've got to be pretty special that day to get that treat!  Rascal #2 gives us all that creativity about the body funk but it was Rascal #1 that pulled off the hilarity tonite.

Heh, heh, heh....

Signing off for now,

Still Searching...

Tuesday, January 31, 2012

Birthday Meltdown...


The oldest twin whom I will so lovingly refer to as "Rascal", had a major meltdown at the tail end of birthday celebration #4.  Ok, back the bus up.  The Rascals (my twins, both boys, age 7, both on the autistic spectrum, both amazing, wonderful, stinky little rascals) ended up having 4 celebrations this year for their birthday which was wonderful and fine by me and their father.  Although, admittedly, by celebration #3 we were wondering how in the heck we were going to transition them out of getting gifts on an almost daily basis, I still have no regrets... Wait, maybe that's the ativan talking. 


But I digress.


The meltdown. 


Any parent with an autistic child understands the meltdown and everything that comes with it. No definition needed. So I'm not going to define it here.  Unless someone asks of course but it's 1242am and frankly, this is my blog, right? ;-)  My poor son has already been pushed beyond, beyond,  and he's been stimming on his favorite white trampoline for the last hour+ is now on all fours, face down, into the dirty carpet, crying his eyes out, rocking back and forth... my heart is breaking for him.  I just need to get him out of there.  I soothe and coax him off the floor. A friend of the family, who doesn't have any experience with autism, but has a very soft and tender heart, is talking loudly and faster than Rascal needs, requesting all types of distracting activities thinking this is going to help: "Hey, I'm sad to that we have to leave. So let's not leave at all!" ....oh dear Lord, that's not an option!!!! "Why don't you and I do an obstacle course and play and play and PLAY!!" ...oh no,..no nonononnoNONO!  


Smiling, I say over my screaming, tortured child, "I've got this covered. Could you go to the other room now?"  Thankfully he is a very bright and loving friend. He quickly exits this scene while his wife whispers something to the effect that this scenario is not like their parenting experiences with their neurotypical 6-year old daughter and to let me parent my Rascal.  ...thank you sweet wife of said friend...   


The meltdown continued for another hour and I'm being conservative.  It was hardest on the drive home. Imagine the four of us: him, his father, myself, his twin brother all in the minivan, balloons and presents up the ying-yang, leftover party food, the sweet smell of sugary treats in the air, all tossed askew everywhere.  If a stranger would have peeked in they would thought a bakery and Toys-R-Us had just vomited on the inside of my Kia.  Of course this was in a crazy attempt to get everything and everyone in the car in the least amount of time to get home as quickly as possible because I knew that a bath would be the magic pill for my Rascal.  


Aspects of autism makes a parent crazy and that's just honest.  In the moment of knowing, that deep in the gut wrenching familiarity that the meltdown is imminent, that anxiety...my mind goes in 100 directions from what I'm feeling to what he's feeling to the 3rd, 4th, 5th step of problem solving redirection of it... to how do I handle all of these people around me... then back to my Rascal's needs right now and how can I get him to a totally quiet space in a space that doesn't have any of that for him... reassessing my stress level in this moment then in lightning speed back to what he needs once he's home... can I get him home safely...will he be safe in the car all the way home... and he's pleading with me to get him out of there and I'm trying baby, oh how mama is trying so, so hard I'm so sorry I can't whisk you out of here on a magic carpet and take all of this misery from you... and on...and on.. and on... as my mind continues to scream.


And no one is the wiser behind my smiles and thank you's as he's rocking and flapping and screaming, burying his face in me.  




Sensory deprivation.  He submerges himself almost completely except for his nose and mouth in the tub once we get home. That's the only things that remain above water level in the tub.  He goes from hysteria, which is where he remained the entire half hour drive home and into the house, to calming down in the water, then submerges himself as he always does...  


...sigh...


Something about water.  He must get that from me.  He hears the familiar sound of the water shooting through the pipes in the tub.  Within seconds that child is naked and running into that bathroom!  His father has to slow him down every single time he gets in.  He has severe ADHD with his autism.  Think hummingbird.  That's my Rascal.  Within minutes the crying ceases.  By 10 minutes his scripting is almost gone.  I feel the knots in my shoulders starting to ease up.  Within 20 minutes he is quiet and has slipped under the water slowly, finding his quiet, sensory deprived space and is in his bliss.  I listen and hear nothing. His twin is watching a TV show with the door shut and I revel in this one. singular. moment.  


...quiet for my child...thank you Lord...


Somehow, that moment made everything okay again.  He finished his bath and was back to himself again.  He washed all of that junk off and was able to neutralize himself which rarely happens but wow -- what a gift!  We played Pop the Pig -- one of his favorite toys right now, watched some AFV on youtube and then headed to bed, every one of us totally exhausted.  


As I lie in bed last night thinking about how the day unfolded, I think about neurotypical families.  Even typing that, I paused for minutes, staring blankly out into space.  As much as I really don't like comparing my community to that community because I'm not sure if it helps or hinders, I wonder about the ease of many decisions that are made on a day to day basis.  I also wonder about the reasonable expectation that whatever you plan has a fairly good chance that it's going to happen the way you intend.  That is so not my life... I'm not complaining, it is what it is.


The day ended with both boys smelling yummy even though Rascal #2 likes to call everyone stinky :-), in bed, books read, nighttime routine kept and the boys only woke up twice in the night.  Far better than I had anticipated and "normal" for us.


As they were drifting off, I lay snuggling them.  Rascal asked, "Birfday tomorrow?" I said, "no baby. Next year".   No reply. Silence, then soft snoring.  Maybe the transition won't be so bad after all.


I remain hopeful as always.