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...

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....

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.

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.

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...

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.

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...