I Love You

After a full day yesterday of stressing out because I have lost my child care person who has been there for us since he was an infant, I was back in da Mama despair at the inevitable losses it will make in my life.  If I have no child care, those last few things I was able to do for work will vaporize, and then it's just me, and hours of nothing but him.  The tiny tyrant.  The monarch of misery.  HRH da Creature.

Then, this morning, on his way to the back door to go to school, a rare moment, a glimpse into the mind of the inexplicable child...

....he paused, reached up and touched the dangling glass no-no gently, softly, almost tenderly and quietly said "I love you."

Words fail me.  The compassionate, ever-faithful love of God himself stops the world for just a moment, and I am reminded that it doesn't matter if I never direct a choir again.  I have a job.   His name is da Creature, and he matters to God.

Mass is a Nightmare

Mass is a Nightmare.

I'm Catholic, and the thought of missing a Sunday Mass for any reason sends shivers of fear down my spine.  The confessions always sound like a laundry list of reasons that OTHER people would prefer I not take da Creature to Mass.  It was always bad, because I'd get reports from the nursery, even very early on, of the child who never quit screaming, who had bad chronic diarrhea, who would throw things at other children, and then, even before he had a chance to AGE out, there were murmurs of kicking him out because he was big and couldn't play nice with the other children.  Once people identify your child as a "problem" it's all they see.  Behaviors that go unnoticed, untended, and uncorrected in other children become the sole focus of the adult on YOUR CHILD and there's a snowball effect.  Especially if he doesn't feel good.  You're never gonna know he doesn't feel good, by the way.  NEVER.  He won't tell you.  I don't think he even knows himself.

Once they effectually got rid of him from nursery, I was faced with this deep-seated parental NEED to teach him about Mass.  I love the Church.  I LOVE Eucharist, and I have a deep devotion to the sacrament.  I want desperately to just go back to singing in the choir and being a congregation member.

All that has been stripped from me.  Every week, all Masses, we tried it all.  I tried daily Mass for a while in the summer in the hopes of banishing the "new" the "different" but to no avail.   He gets very overstimulated, becomes loud and all his ticks come out...clicking, popping, thumping, making random repetitive noises, and then when I TRY (God bless me, I've TRIED---stop giving me that LOOK Lady, I know he's doing it, you SEE me trying to make him stop, I'm NOT A BAD PARENT YOU JUDGMENTAL JERK...*sigh*) to make him stop he gets defiant and beligerent, and then the REALLY distracting behaviors make their appearance.

Meanwhile, I've completely been consumed by da Creature's behavioral crud and no longer have any spiritual focus or awareness other than him, the beauty and majesty of Christ's sacrifice lost in a sea of frustration, humiliation, embarassment, and fear that someone will suggest we just not come back to my face.  I cried a lot at first.  I went to confession a lot at first.  Then my priest (outside of confession) told me that da Creature was sick, and therefore, I wasn't under the obligation that others were....I'm sure he meant well.   It made me feel like such a complete failure. 

In the piece below, the nice lady recognizes the pain on the adults' faces.  I wonder some times if anyone here ever sees it on mine?  I've lost SO much to take care of this child.  I'm SO incredibly isolated and lonely and stuck in an impossible situation and I can't even go to Mass anymore in a way that makes sense.  Oh, I can hire someone to take care of him during Mass, but even the lady I hired doesn't want to be with him anymore and I'm out of humans.

Normally, I'm the amazing solution-girl.  Now, I'm the sad failure-girl.  Somehow, some way, there have to be some compromises.  I'd like to band together with the other isolated parents who can't bring their children to Mass because they can't be in there, and they can't be sent to "Children's Church" and they are too old for the nursery, and pool our resources to hire someone for a "disabled child" care person during Masses so we at least can go to Church.  However, the sad truth of that is all of us are so scattered and alone dealing with these children that we rarely come up for air, and organizing us would be a difficult task indeed.  Not to mention the problem that the Church would have with liability for a grouping of developmentally altered destructo's all grouped together....

Anyway, please read the article below.  We really do NEED more people like her in our lives.  The Nightmare gets better when the people around you are not all wrapped up in THE LOOK.

To read the entire article "Profound Lessons From Asperger’s Syndrome" By Samantha Keller by clicking on the link because we definitely    Need MORE People Like THIS! :):

The boy’s father came back to the table with an enormous piece of carrot cake for him.  He gently placed it in front of him with a plastic knife and fork and smiled at him.  In one fell swoop, the boy inhaled half the cake. The fathers smile quickly disappeared.  “Slow down bud!  Use your fork and knife!”

But the boy did not like to be reprimanded and he grabbed the knife like a dagger and stubbornly resisted his father. In a battle of wills, the boy reluctantly cut the remaining piece in two and shoved them both in his mouth in rapid succession.  Trying not to tremble, the knife only inches from my face, I dared not move an inch.  In lightning speed his father grabbed the knife, cleaned up the frosting smeared all over his face and sent him off to explore the church. His mom trotted after him, glancing back with an apologetic look.  The father collapsed into the chair and rested his head in between his hands, exhausted and embarrassed.

“You know you are doing a great job, don’t you?” I said.

His eyes filled with tears and he whispered, “I don’t know.  He’s better at home. He feels safe there.”

 Our eyes met, acknowledging a difficult situation at best, recognizing that sometimes there are no words.  I could see his fierce and unconditional love for their first-born son mixed with sadness, disappointment and struggle. His wife came back to the table and the little boys ran off to play and care for their brother, another reminder of how their whole family was affected by Apsberger's.

“Does he ever get lost?” I asked, noticing how he would become entranced by an object and take off at full speed only to have his attention caught elsewhere a moment later.

“Not usually," they said in unison.

I can relate.  So much, on every front.  I long for those moments when I brave eye contact with another adult and THE LOOK isn't there.  I'm not a big fan of pity, but compassion works.  Understanding.  Reading the implicit post-it note on his forehead and having a forgiving and compassionate heart about whatever offensive thing my creature just did.

Pancakes

 "Why can't I do that?"
"Because you're short.  So you can't reach it yet."
"You have long arms...
"Did you know your wingspan equals your height?"
"I already know that.  It's weird..."
"...but true?  You really like those books, don't you?"

Da sister and da baby brother boo clean up after pancakes every Saturday (or holiday, like today).  Da creature asks a thousand questions, and she patiently answers each of them, while insisting that he help with the dishes...she's "teaching" him how to do the dishes.  This is her method.  She stays cheerful and doesn't give up HER agenda while he, the Great Distracto, attempts to derail everything with a stubborn determination that has yet to equal hers, but rivals that of a mongoose facing off with a cobra.  They are deliberate about the combat, and she has always won.

It was that way in Top Soccer, too.  She could work with any kid, any disability, because she'd assess what he/she could and could not reasonably do, and then make workarounds that meant they'd stay focused on soccer and fun while avoiding the sentimental pitfalls of the WHINE.

In my house, pancakes seem to banish the WHINE.  Da Creature knows that if he just does what I ask him to do...measure this, read this, get me the eggs, smash yolks, cut butter, "stir", "sift" (in quotes because his version of these activities is not what you'd normally expect from those verbs), and generally put up with not getting what he wants RIGHT THIS INSTANT, the pay off is bacon and pancakes.

He can get a bad case of the WHINE, though, about most everything else.  The WHINE is a phenomenon that adults/teachers create in their disabled kids/students.  It is the way of the "give up".   The way the child has of communicating that the activity at hand is distasteful or difficult and that he or she is so afraid that he or she will fail, or disappoint that they just make this whine sound and try to change your mind about whatever it is you want them to do.  Da sis's workarounds are brilliant.  They never ever once acknowledge the whine, but address it with action and a smile.  We'll do this.  We'll do it this way.  No, you can't do that instead...we're gonna do THIS.  She never "validates" the WHINE, she never allows them to feel bad, and she ALWAYS gets her way. 

Sometimes, I have to admit, I do give in to the WHINE.  I let him give up.  I give up.  Everybody needs a cheerful non-giver-upper in their lives, no matter how obnoxious that person can be when you REALLY don't want to do something.  Without her...he'd never even try to put the flour away on the top shelf of the pantry.  (I'm so glad he's still too short...it won't be long before there's no where left for me to put things and I'll have to engage him on every object I care about, which is a very daunting thought.  But for now...it's all good).

The Dog

Here's a fun convo to have with your spouse (bear in mind, he's an engineer ASPIE spouse, too):

"Honey, I want to get da Creature a dog"

"What kind of dog?"

"A helper dog."

"What kind of dog helps autistic kids?"

"A $15,000 one."

See, you have to be direct.  You have to state your case with as little hooplah and emotion as possible.  You have to be, well, sort of blunt.  They prefer that, actually, to big persuasive argumentation with evidenciary support and what not.  They like "this is this is this" rather than "you should want what I want because you LOVE me" B.S.  They're just not gonna respond to that.

It didn't take even a second...he knew I'd handle it, and whatever it takes, I'll do it, and so long as he doesn't have to talk to anyone on the phone, meet anyone at the house, discuss this with anyone at work, ask anyone for anything or train a dog, he's cool with whatever I decide.  So, his response?

"Okey dokey."

All that having been said, I'm now on a journey I cannot fail:  I WILL find, finance, and acquire a helper dog for my creature.  What that dog will do for him is beyond measure, beyond imagination.  It could save his life, a thousand times over, but what I know is that this will be a HASSLE for me.  That's okay, my creature loves me enough to trust me.  That's all the motivation I need.

So...da Creature's Mama is gonna go after the big enchilada.  We want the helper dog.  We want him in the Mississippi Public School system WITH his creature.  These things will be a test of patience and possibly the legal system if that's what it comes to.  But hopefully, we can make it happen.

I desperately need advice on how to make this a reality.  I need other Aspie moms who've paved the way for this to send me links to their blogs.  Google and I are not having the best of time and my searches are getting me a little help.  I'm going to put every link on this topic I find in a link list on the sidebar as I go.  I'm going to chronicle every stage of this...from getting a formal diagnosis from a reputable, well-informed physician (probably out of state, given the situation here in the country's WORST state in things like education, health care, obesity, etc.), to applying for and acquiring the dog, to how the presence of love unconditional in the eyes of a golden retriever reflects in the heart of da Creature.

Please let anyone who knows anything about this process know about this site.  I'm not gonna use it for fund-raising, as I'm budgeting to do this on our own family's budget, Dave Ramsay-style, and I'm probably not gonna put ads on this thing because I ***HATE*** ads.  So all there will ever be is content.

I know from past experience that it is hard to get a blog with only content really going, but that's okay.  da Creature is a force of nature...he has his own gravitational pull.  So pull up some stamp pads, grab some ink and lovingly smush your hands on a loved one's face....have a laugh, a cry, and share our story.

A GREAT Day!

Good days are hard to come by with da Creature, but a great one?!?  Those are practically unheard of and he had one today.  I got a bright pink sealed envelope from his P.E. teacher (he gets to be with the fourth grade boys for P.E. because he can't sit in Library or Music because they don't happen every single day and are therefore always brand new and aspies HATE "new" and "different" like you and I hate dental work) and the following note:

 

Life's good sometimes.  GO CREATURE!!! This is really good news.

Cherub Choir and the Governor's Niece

I take da Creature to a "Cherub" choir every week.  It's for kids ages 4-1st grade.  They are angelic, adorable little things, mostly with flowing blonde curls and ballet shoes, often dressed as princesses and they sing and dance to the little songs and it's SO SO SO cute...

Wait...those are OTHER people's children.  I must be channeling some alternate reality because in amongst those lovely children who remind me so much of my first born, neuro-typical, cooperative, calm child there are these other things:  BOYS.  Well, one to be sure:  da Creature.

While they croon in soft quiet voices "skinnamarinkydinkydink, skinnamararinky doo" and expertly perform the hand motions...a wave of a hand resting on the other arm not unlike Native American stereotypes of "How!" da Creature is waving the bottom hand while the top one limply neither waves nor wiggles while he SCREAMS..."skinnmyrinkydink do, skinmyrinkydink" then descends into what cannot be called adorable gibberish and finally lays down on his mat with his plumber's butt in the air.  *sigh*

He also spins like an airplane and he has quite a wingspan, my darling.  He'll take out three kids in one spin and not bat an eye.  So, it was unfortunate that day when the music teacher decided to put HER next to HIM.

To be clear, she's a perfect angel.  She has perfect clothes, curly long blonde hair, weighs about 3 pounds when dressed in perfect matching wool felted coats and hats, and is shy, scared, and barely four.  She's also the Governor's niece.  No foolin'.  THE Governor of OUR state.

da Creature thought she was cute too, apparently.  I remember sitting in the hall, watching this mess unfold, thinking...maybe I should have warned the music teacher not to seat such a small frail and clearly shy child next to da Creature?  Maybe I should intervene?  Who is that darling little girl?  Then, I heard her mother talking in the hall.  Simultaneously, I heard the music teacher calling roll, and heard the unmistakable LAST NAME of the little angel who was unwittingly seated next to da Creature, and realized as he stood up, spread his giant arms, and launched his GIANT creatureness (he now weighs about 75 pounds) at her in his best imitation of a mud slide WHO SHE REALLY WAS.

As the kerfuffle ensued, I decided it was best not to allow myself to be identified so I let the music teacher handle things and slinked (is that a word...slunk, slanked, slinkened?) off to the bathroom.

It's good to get these things out of the way early on, I suppose.

I notice they aren't seated next to each other anymore and she eyes him with THE LOOK, and her mother eyes me with THE LOOK, having correctly identified me through the ensuing rehearsals, and all I can do is wish he came with a little neon sign on his forehead:  "It's okay, I'm autistic and people are teaching me how to be a good citizen, but you're gonna hafta be PATIENT, 'cause I can only get one thing right at a time right now and really my mom thought pooping in toilets was more important today than whatever you're upset about right now."

That would solve it, right?

The Hat

Why did you do THAT?

Why would ANYONE do THAT? 

It's MY hat, mama.  Sister took my hat.  It's MY hat. 

Do you like the hat?  NO.  Will you wear the hat?  NO. 

Why did you pull the dangling pretty things out of the hat?  I WANTED A NORMAL HAT.

But your sister liked the hat and needs it for school and you tore it up.  That's not nice.  

I'm sorry.  I won't ever tear up the hat again.

True, but the hat's all torn up now, so that's not really an I'm sorry, is it?  *sigh*  da Mama is frustrated because da Mama went !boom! right around the time the sister whined that her hat had been torn apart by frustration boy.  He was mad because she liked it and had worn it to school after he abandoned it because he didn't like it and wouldn't wear it.  I wanted to eat sushi.  Instead, I'm using the chopsticks wrapper as a makeshift crochet hook, pulling the dangly things back through the tiny holes in THE HAT and re-twisting the dangling things so the hat could be returned to a state of normal for her but abnormal for him while I tried to demonstrate by threatening to "tear up your teriyaki" how having the nice thing you just got brand new all torn up because someone is mad is a painful thing and there he goes.... waterworks, remorse, begging me not to tear up his teriyaki...(thinking to myself, how would one do that in the first place, why DO you let your mouth run away with you *headdesk* *headdesk* *headdesk* so this is another of those stellar moments in parenting and WHY would they make the holes on this stupid hat so small, oh, the sushi is here, I want to eat in peace...where did PEACE go?  Oh yeah, it vanished about three hours after he was born six and half years ago NEVER to return) and then a quiet "I'm sorry sister, I won't tear my hat up again if you promise not to tear up my teriyaki...mama you should say your sorry and take it back".

I'm sorry.  I take it back.  WAIT just a darn minute...oh well, another hour passes with da creature and no one was seriously injured.  The sushi was fantastic and the teriyaki is still slowly digesting in his tummy and all is right with the universe again.  She has custody of the hat and hopefully he'll not tear it up again.  Such is life in our crazy world these days.  Never a friggin' dull moment. 

I'd pay good money for some dull.