Hi From HavocandShine!

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Come on in!


Havoc (our backyard)

 
Misaligned Motherhood. Madness and Miracles.  It’s scary not always pretty, but it’s always (mostly?sometimes? occasionally?)hopeful. It’s usually messy, but it’s always the truth.  You should know from the get-go that we get knocked out of the box a bit by autism and dementia, and this sometimes makes a Mommy very, very tired.  
 

                   But…

Shine (our bathroom window)

There’s a lot of really, really good stuff  outside that box.  Sparkly Stuff.  Sacred Stuff.

And you, regardless of who you are, who you think you are, or who you think you should be, you are always welcome here.  Oh, and you can absolutely  find me if you want–I’ve met me, and there are bound to be some questions…Or maybe you have some answers, either one works.

 There is Light.

I’ve seen the dark and I’ve seen the difference.

Come on, I’ll show you..

 And one more thing…

Please play nicely–the kids are watching.

What Can I Tell You?

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I swear, I sat here with my fingers poised on that middle row of keys for at least five minutes.  Frozen. Not sure how to begin, not sure if I should begin, and frankly, not sure if I could still type because I just now have my laptop back after much-delayed repairs.  And I’m typing now, but I’m not saying anything.  I don’t know how to begin.  Where to begin.

Geez.

Let’s see…

Last year (year? seriously?) I got really serious about LRHF’s school services because the closer I looked, the more of a complete nightmare those services were.  And I’m a teacher, so how did this happen?  God only knows.  Anyway, I swear to you that I did everydamnthing I was supposed to do to make sure the school system provided for my kid. I did.  You know I’m not one for going the distance, but it is LRHF, so what can I say?  Hell, I was escorted off school property at the beginning of the school year.  Because I wanted to meet my kid’s paraprofessional.  The one that they had not hired, as of 24 hours prior.  The one that whose name they could not give me.  So yeah, I wanted to meet this para, so I waited.  I also put away school supplies for the homeroom teacher because I am super helpful that way. Anyway, no para materialized. Long story short, the principal got itchy and asked me to leave. Utterly ridiculous.
alphaLast February, I got an attorney. Attorney got a settlement agreement. And that’s where it all fell apart, because the school system agreed to provide stuff that they had no intention of providing. Mostly because they don’t know how to provide it, and also, they do not care that they do not know. All of this matters not one bit.
Furthermore, as long as the system is “making an effort” or “moving toward” implementation of the settlement, well, there really is nothing more I can do. There simply isn’t.  I have called and written and contacted and bugged and bitched and there is no one left who can tell me how to fix this shit.

So I think it is just adorable when people say, “but if it’s in an IEP, they have to do it!” or, “Legally they have to send him to a place where he can get what he needs. That’s the law.” Adorable, all of you people.  Really, I mean that.

Because that’s not how it works. (In no way am I implying that the system works on any level, just so we’re clear. It doesn’t. At all.)

There is nothing more I can do for my kid in this school system. I have officially done it all and gotten nothing for him in return. It sucks. More than I can begin to tell you. Seriously, this whole experience has changed how I see everything. Because working hard and working smart and being diligent and all that shit? Exhausting and useless. Doesn’t matter one red hot iota.

depression1This thing, it has broken me more than a little bit, I won’t kid you. And if I had something, anything, to show for it for my son, well, I would pick up the ugly broken pieces that make up me and I would keep on trucking, I swear I would. That didn’t happen, though. It is just so bad. I can’t get my head around the utter and absolute badness of where we are right now. I sure as hell can’t write it all out yet.

Baby steps.

I don’t know what to do here. We don’t have options. We. Just. Don’t.  Even now, I’m looking at what I just typed and I’m thinking that surely I don’t mean that.  Except I do.

So far, all of everything that is supposed to work has meant exactly nothing and that hurts like you wouldn’t believe. He is so, so, so worth what he needs, my LRHF.

But you know that already, I know you do.faire

Look, there is so much hurt and anger and fear going on right now, right in these fingers, I hope (because I like you) that you can’t imagine.

And I still don’t feel like talking, writing, about it. I’ve worn ruts in the hard pan of my misfiring brain trying to work all of this out. My soul is tired and I’m afraid. My faith has turned cold.

And thank God I decided to share, am I right? Sigh.

I don’t know what kind of company I will be anymore. We have history, you and me. We’ve done cancer and dementia and job loss and death, death and more death and I wrote about all of it. But now? This?

I just don’t know.

It’s like that now.

Ten Years Ago

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I spent a Valentines Day slouched against an isolette in the NICU.

twinbabies See,  my very-brand-new and struggling-to-breathe Fuzzy had just been intubated and the NICU phoned us just after midnight to say that we should come. 

 Can you imagine?

 So we  went. Longest car ride of my life. 

We talked to the doctor and we prayed,  and in the midst of that nightmare, that confusion and fear,  it took every last shred of courage, but I managed to ask if my son should be baptized. I had to. 

Can you imagine?

Not the Actual Fuzzy

Not the Actual Fuzzy

The doctor said we should wait and see, so I just sat next to that isolette with Fuzzy’s tiny hand wrapped around my big useless finger,  and I will tell you that, yes,  I wept until I shook.

The nurses, they said, “Sing to him, Mama. He can hear you singing.”

Okay.

But do you know that for all the many, many songs I have sung for the many, many audiences, I couldn’t remember even one for my already-fuzzy-headed newborn son?

It’s true.

I couldn’t remember anything, not for the longest time. This was not good, because you see, singing was the only thing I could do for him and dammit, I came up with nothing. 

But I tried.  And of course, it wasn’t really singing, it was more just the sound of my breath against the isolette, but I sang the one song I could find, the only one that made it through the weepy fog of fear and exhaustion and worry.

Ten years later, it makes me smile to imagine what those poor nurses must have thought–were they sorry they told me to sing?

Maybe.

JOHNNY CASH 1After all, I was the only mother in the NICU singing “Ring of Fire. ” 

     ring

Goggle Time

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SAMSUNG DIGITAL CAMERA I did remember to take off my safety goggles before picking the twins up from school.

That said, I’m guessing that the only thing more disturbing than a mom who shows up at school in safety goggles (Don’t ask. Just. Don’t Ask.) is the mom who shows up having just removed her safety goggles. Yeah, those goggle-marks take a while to fade.

It makes people wonder what mommy does all day.safety-glasses_and_gloves Go figure.

*sigh*

Meh. I needed to make some soap. I needed to do it.

LyeBottleI don’t know that I should find the precise weighing and mixing of lye with oils to be so terribly relaxing, but I do, I really do.

Don’t give me that look–there’s a lot of super stress-y stuff going on around here. Humph. 

Some people do Sudoku to relax.  I am not one of those people. I make soap. Today I made soap with beer. Seriously, beer makes for some great soap.

We can’t underestimate the many blessings of beer.

And while I know will never be “easy” for me to sacrifice beer to a process that doesn’t involve the direct consumption, I am getting better about it.

I hardly ever even cry about it anymore. That’s some real progress, folks. 

And it helps when the soap turns out so well, which this batch totally did. Gorgeous stuff. 

See?  IMG-20140207-01099  

It was almost worth not drinking the beer.

Almost. 

Well, at least I didn’t cry, right? 

 

Stopping by the Woods on a Snowy Evening

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IMG-20140128-01073 Kind of.

More like “Carefully treading the two absurdly hilly blocks from our local elementary school after dropping off oatmeal muffins and glowsticks (I can’t explain that part. It just felt right) to the teachers who are stranded spending the night with children who are sleeping  at school because of the freaky Southern snow event that no one saw coming.” 

That would be a lousy poem title, don’t you think? IMG-20140128-01065 (2) I thought so, too. And my sincere apologies to Mr. Frost.

That said, the walk itself, with Fuzzy at my side, was divine.

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No More Mr. Nice Mom

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That’s right. That’s where I am.angry black bear (1)

I will not play nicely anymore, not while the school year slips away without LRHF getting what he needs.

I have no idea where to go next, but I am drawing on the sheer Badass-ery of how pissed off and tired of this crap I really and truly and rightfully am .retro-mom-angry-280x280

DSC00527 Because we are wasting my son’s time.

Do you want to know when I scheduled the meeting that closed down the media wing (Fuzzy gives me a hard time when this happens, as it apparently cuts into his Library Time, but hell, I’d meet in a lavatory stall if it got the job done, so yeah…) at which I wore real pantyhose and spoke relatively eloquently (and probably for a long time, too) about What My Son Deserves and What The Law Says and also How It Is All Perfectly Do-Able?images (1) Do you want to know when we had that meeting at which the Director of Special Education showed up everyone listened and smiled and agreed all over the damned place about every single damned thing on my LRHF List?

November 26th. Last November.

imagesThat meeting was months ago. Months ago.  Oh, the magnificent things to which we did agree! It was, in fact, a veritable love fest, as such meetings go. You should have seen it!  I was super-empowered (For the record, I think the pantyhose had a lot to do with that. Also, I wore grown up shoes, not my Birkenstocks, and I think that probably helped as well.) and super-focused, and I stayed on task and was not distracted by shiny things at all–after all, you know how I am about shiny stuff.  Seriously, I was amazed at how well it went, that little meeting of mine.  One hell of a meeting, as meetings go.

iep-goalsRight. As meetings go.

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LRHF Binder (LRHF not included)

I had a list, a LRHF List of The Stuff LRHF Needs, and it was all right there in my Big Green LRHF Binder (Did you know about binders, by the way? OMG.  They are amazing–Here’s how you do it–you put all your important stuff in the binder, and then, when you need that stuff again–Whammo! Important stuff right in the binder, exactly where you left it! Really cool stuff.  Of course, I can’t lay my hands on the Big Green LRHF binder right this minute, but I’ll keep looking. I’m sure it’s here, it has to be here somewhere…)

Oh, and I had all the really cool acronyms…the IEPs,  chats with ADAP, the AT assessments and recommendations speech112from the SLP, the FIP and FABIP (performed by a BCBA, of course) and then, all of the standard FAPE and LRE stuff, you know. Actually, if you don’t to know, then count your blessings about it. That’s a lot of letters and the more you say them, the more you feel like you’re reading from a Thai menu, believe me.

Still, at least I had the Big Green LRHF Binder, right?

Gosh, how do I back track through this mess? Back to last year’s mess? Back to assessments that are almost a year old? I guess I haven’t said much about it because it is awfully overwhelming to find out that your kid isn’t getting a decent education, a free and appropriate education in the least restrictive environment. You feel pretty overwhelmingly stupid about it.  It’s actually quite exhausting, keeping this kind of mess just at “overwhelming” and not let it seep into “paralyzing,” because it could so go there.

And that’s no good to anyone.  So yeah, I try to stay right on the bubble at “Overwhelming.” Yay, me.Women-Mental-Health2

But back to the meeting…lots of talking, lots of agreeing, people taking notes, plans made, options considered, that sort of thing. And we decided, no, we agreed that it was reprehensible that LRHF did not have the technology he ipad-mini-pressrequired to have access to the curriculum. This is a fancy way of saying that he needs an Ipad and some software so he can functionally communicate with his teachers and peers. So we can measure just how clever he is and address any deficits.  So he can tell his mother how his day went.

talking Little things like that.

Because until this technology is in my son’s hands, we are all just guessing, and that’s not good enough. I am his mother and I can only guess how his day went.

Let that last sentence sink in for a minute. I dare you.

He banged his head rounding a hallway corner awhile back and the nurse called me and she had to guess that he was okay. His teachers have to guess how smart he is and guess where he’s frustrated and freaking guess when he has to use the restroom, for God’s sake.  And let me tell you about the guessing thing–people will always guess that the non-verbal kids are kind of stupid.

Really. Apparently this is the default setting.Roundup-of-Dolls-with-Disabilities

I am not going with that.

autismThere are behavioral issues that need to be addressed.  How could there not be behavioral issues, since the kid can’t communicate even the simplest of requests? Honestly. But dammit, why are we trying to  “guess”  about behaviors? That’s like playing charades with someone who isn’t in on the game.  Or someone who doesn’t want to play the game. Why should LRHF have to play charades?danielprek[1]

So where does that leave us?

I would like to be able to tell you that we are following all the appropriate protocol and acquiring all the necessary documentation and speaking with all of the salient administrators, and that things are smoothing over quite nicely for my son because he has a functional means by which to tell his teacher he needs to use the bathroom. I would love to be able to do that. In fact, if we go by what happened at that magnificent and happy meeting way back in November of last year, I should be able to tell you that. After all, we agreed that I should be able to tell you that.

But I can’t tell you that.

Nothing has gotten better. Nothing. And I know that nothing has gotten better  because I have it all written down in my binder.  Can you imagine not being able to ask your child about his school day? It is beyond sucky, it’s scary. Sometimes I think I imagined the whole  “hey, let’s give the kid a way to communicate” thing, but I know I didn’t.

I have the notes.

There are big laws against this sort of thing, just so you know. In case you find yourself in a similar situation, you should know that yes, it is against the law to treat a child this way. And yet…

I'm_sc_893_lonelygirlDo you remember those Early Autism Days? Back when I couldn’t say the word or bear the thought? Well, this is harder than that. Why? Well, it’s funny, I guess, because everything has flipped around and now I can’t stop bearing the thought and I won’t stop saying the word.  Autism.DSCF0082[1]

Birmingham-20120715-00155Autism. IMG-20130204-00372Autism. Birmingham-20120403-00258 (2)Autism.

3710251-2-autistic-spectrumMy son is magnificently autistic and this is all wrong, where we are now.  And I’m just so angry–maybe I haven’t gotten that across here but I am really, really angry. Worse,  I don’t yet know how to make it right.  I’m mortified that my son has no voice, horrified, in fact.  Every day, every phone call, every conversation and correspondence is an exercise in staying on the “overwhelmed” bubble without slipping down.

This is hard. WorkingMom  But this isn’t about me and it isn’t optional, you know? This is what moms do.

danielsmile

My Magnificent Autistic Son. No Trade-sies.

Because it is one thing to have an autistic kid, and another to have a remarkable autistic kid. But the most difficult part so far is to have a remarkable autistic kid and not have what he needs.group photo

I am standing up for my son, speaking for him until he can do it for himself. Until that moment, I am screaming at the top of my lungs for him.ADHD-kids

Because I can.

So…What’s New?

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psychadelic_peace_sign_0515-0909-2902-1443_SMUWow. You look fabulous! And I’ve missed you, but then, I always do, don’t I? (Yes. I always do.)

Has it really been months? My gosh! How did you manage?

Quite well. Yes, I know. And that’s okay. Glad to hear it, in fact.2470276-illustration-of-childlike-drawing-of-a-brother-and-sister-friends

Me? Oh….you know…I’ve been up to, um, stuff. I can’t be left alone for a split–well, period several months, apparently.

But we knew that.

2014jackHolidays? Uh huh. They arrived right on schedule, didn’t they? But this year, I managed to make it to Christmas Eve services! I know, right? Especially since we, that is, me and my much-younger bunch of boy-children,  we were, um, escorted out of the sanctuary the last time I tried the Christmas Eve church business. Oh, Good Times!  Why, we hadn’t gotten out of the parking lot that night when one of the ushers piped up with how “that boy’s too big to be riding on your hip like that!” twinbabies 003Yes, because I’m sure when he was carrying twins, he was just a Ph. damned D at moving multiple waist-high and wiggly people in the same direction at the same time. *sigh*

And seriously? Did that Fine Southern Gentleman really want to see what would happen in that sanctuary if I put the kid down? That child who had never once budged on the whole no-more-lit-candles-on-the-pretty-altar issue?BurningCandle If I had a dime for every time I argued (usually with horrified pre-schoolers, and yes, they may well be my theological equals, but still….) that “just because my kid blows out the candles on the altar, it doesn’t mean that Jesus was gone or dead or anything, and also, yes, in fact, I do think that Jesus is still the Light of the World, so could we please cut the autistic kid some slack because that’s pretty much what Jesus would do?” Oh, if I had that kind of money LRHF would have gotten a whole lot more speech therapy.

Absolutely.

But that wasn’t the high point of that particular Christmas Eve. Mais non.  No, I think the high point of that experience was when Fuzzy stood up in the pew and yelled, “Mom, I can’t see God from here! WHERE IS GOD? I can’t find God!”  Now, I believe that this was not so much an existential moment for Fuzzy, as much as it was a matter of, well, of simply being Fuzzy, if you know what I mean. He has always been that kind of kid and part of me hopes that he always will be that kind of kid.  Still, it was just then that an usher (not that usher, a different one) caught my outnumbered-deer-in-the-headlights eye and quietly asked if perhaps we wouldn’t be more comfortable in the crying room?

Sigh.

No, we would not be ‘more comfortable’ in the crying room, thank you very much. Everybody knows you can’t sing in the crying room. Sheesh.  I drove home in tears, all the while babbling at my small sons that “All mommy wanted for Christmas was to go the church, and now look what you’ve done,” Yes. Because that will never come up in therapy later on, I know.

But all of that was so long ago that it now it just makes me laugh. That’s good, right? I mean, that says I don’t hold grudges, doesn’t it?

Don’t look at me like that.

choosing_wood_and_finish_for_church_doors_01 Anyway, I went to church on Christmas Eve. It is a good church. A good Methodist church, but what’s a Lutheran in Alabama to do? And we’ve cross-communed with Methodists for years, and also I don’t think Jesus really looks that closely at that stuff, so yeah, it was Methodist and it was good. I was by myself, but it wasn’t so bad. I guess partly because this is the church where we have our Farmer’s Markets and I like these folks and partly because I didn’t have to apply pressure to anyone’s collarbone so as to make them cease squirming and/or licking shut all the collection envelopes. So I like to think of it as a win-win.

Leave me with that thought, if you would. Thanks.

christmas-christmas-lights-city-light-lights-snow-Favim.com-41850Wow, it is almost February and here I am babbling about Christmas Eve. I guess I’ve gotten really bad about this writing thing, haven’t I?

As it turns out, I’ve sort of been busy with different kind of writing thing these past few months. And you know how every time I try to multi-task I end up needing more band-aids? Well, I’m trying to avoid that for now.

Trying to stay focused.snoopy_writing

feminist-housewifeBecause motherhood is a constantly changing kind of thing. Changing diapers and then changing homerooms, it moves really quickly  when you’re on the inside.OLYMPUS DIGITAL CAMERA Especially when you’re looking out for a LRHF, and you know I am always looking out for that boy.

IEP-MainRight now we are in the midst of being really angry with the school system. Productively angry, but angry just the same. It has become increasingly clear that my son is “at” school, but not “in” school.  His program is a mess. Worse, it is an unimplemented mess. Wait till I tell you about The Big Meeting in November at which I Made the SLP and OT Cry! Not in a mean way, just in a “very moved” way, I think .iephumor

I hope.*ahem*

The last few months have been about  working and reading and learning and, when it comes down to it, speaking for LRHF.   The last few months have also been about jumping through busy-work hoops and studying Wright’s Law, studying advocacy, and insisting on “mutually agreeable times” and “monitored cumulative file reviews.”

Yes. My Glamorous Life.

alpha

Yes. Every Single One. Just ask me.

And this is hard stuff. I’m scared. I wish a million times that my son had someone better qualified to do the job–anyone but me. He deserves someone who knows what she’s doing, someone who isn’t staying up late memorizing acronyms and their subsequently appropriate applications. You know he does.2014daniel1

And yet…I look to my left and I look to my right and there really is just me. I have amazing people helping me, but even still, this something that only a mother can do.

Im_the_mom_thats_why_sign So I’m doing it.

I’ll tell you all about it next time, okay?  Because you might need to know this stuff someday and I am all about sharing.  Also, as harsh and impossible as the actual process is, the work of it  kind of fits very nicely into my English-Teacher-and-Mother-of-Autistic-Kid brain.

I think I can do this, I really do.

faireBut at the end of the day it doesn’t matter what I think.  It matters what I do.

Somebody Needs to Catch Up

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And it isn’t me for a change.

I know, right?

If the link works (and we know that these things are, um, difficult for me…so please be patient) you’ll find yourself looking at an op ed piece written by  someone who has (I assume) met some real live autistic folks before, what with her being all up and in the business of  Autism Speaks and so forth. (“and so forth” is not part of the official name of the organization, just so you know.)

Then again, if we measure her knowledge of autistic people by the heavy, dark blanket with which she covers autism–and not in that cozy blanket-y way– I could very well be mistaken. In fact, I hope I am mistaken and that she has never met an autistic person in her whole life.

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Because she is just got it So Damned Wrong.

http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

Have mercy, I hope that link works, and that you will read her “call to action.”

silence-wallpaperDeep Cleansing Breath. And another…okay…

And Have More Mercy, because I am here to tell you that my son is

Not sure if the goggles were for the water slide or for the drumsticks. Not sure it matters.

incredibly,exponentially and most magnificently “not missing.”

Okay, fair disclosure–he is outside and it is after dark at this particular minute, but he’s in our backyard. I can totally hear him rustling in the leaves.

Really.

Now, assuming that the link worked and that you slogged through all that “woe is neuro-diversity” crap, I would ask you to please continue reading. Read the comments, if you would,  particularly those written by individuals on the autism spectrum.

So very many people speaking loudly and eloquently about how they are incredibly and fully present, “not missing,” and now mightily pissed off. So there.

AutismSnowflake2copyedit  How could she miss them? These people not one bit missing.

No, rather, it is that she is unable to “see”  autistic people as they are.  And really? That kind of disability must really make her job tough, you know?

Different. Not less.  Totally not typical.  autism_awareness_tattoo_design_by_noctiluca_angel-d3arheq  You get that, don’t you?

We’ve talked about it before, but I’m happy, thrilled even, to say, over and over again,  that autism cannot, will not be boxed in. And this is important because there are those who really are only interested in preventing the existence of people like my son, people who focus on the very why of my son’s place on this earth. I guess she’s just one of those people. Sad for her.Temper_Tantrums-3-small

Autism is not easy. I won’t ever tell you that it is. It kicks my ass often and with an impressive veracity.

But you want to know why my autistic son is here?

danielprek[1]

Oh, please.

My autistic son is here because I am blessed. DSC00527

I Must Have Blinked Again.

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1397275_599001650145616_2130689017_oBig Boy is thirteen years old today.

So. Much. Time.

And while he holds stubbornly onto much of what puts the “Boy” in Big Boy, I cannot deny the passing years.IMG00119-20100522-1325

Maybe I’ll write more later.

  babyjack 002I can’t help but think how his Grandmother and his Uncle would have loved to see him at this age.

This is a most bittersweet season of Mothering.

sigh.

Mornings and Monsters and Mom

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It amazes me that I still wake up some mornings and think about my mother, how I should probably give her a call.

Oh, it has been so many years, and still, I have these early morning thoughts. Silly.

marelie_entch6lfOf course, then I remember that she passed away almost two years ago, she was completely aphasic for the entire last year of her life, and that she couldn’t manage a phone conversation for the last five years of her life.

If I continue down this path of losses, the bits and pieces of my mother that fell away in20101013204847_mistypier final decade of her life, well, as I said, it is a path of losses.

Best not to tarry.

My mother would have been seventy-two years old today.  I cried this morning because mother-loss is always fresh. It doesn’t scab over and scar. It is an odd and constant losing.  Hard to explain.

That one person who kept The Monsters at bay.

Gone. white-lady-ghost

And Here There Be Monsters, you know? grief

Here There Always Freaking Be Freaking Monsters, Dammit.

I wish I could write more today. She deserves more. She earned more.

Mind you, I want to write more, but I’m afraid I won’t stop. There’s just so much.

So maybe I’ll try again–maybe even tomorrow.

bdaymom 002 (2)But I wanted to tell you that my mother was a remarkable, and dignified woman.

GA1960She was witty and gracious and strong.

My mother fought many, many Monsters on my behalf.

Who am I kidding? She’d still be at it.

Thanks, Mom.

Thanks, Mom.

I miss her.