The Trumpet of the Swan Song

Stephen is 16 today.

Instead of going to get his driver's license, he's getting a trip to Arby's.

I almost didn't write today; it's been so long since I've tried to put my thoughts down like this.  Maybe today's the last post, ever.  It feels like maybe it should be...but I reserve the right to come back if the spirit so moves.

In an effort to keep this at a manageable length (I'm at work and incredibly busy - no time for long, rambling posts anymore) I'll say that overall, life with Stephen has settled into a fairly consistent pattern.  Pattern is a key word here, because his OCD rituals and routines are abundant and unrelenting.  We still occasionally have some incidents of SIB, but nothing like it used to be.  For that we are incredibly thankful.

Still no progress on the toileting front.  Who knows if that will ever change?  I counted up recently, and conservatively speaking we've changed over 36,000 diapers over his lifetime.  It's become part of life, end of story.

Because of my philosopher-husband and the things he's read and shared, for some time now I've been trying to learn to accept what is.  Seeing as how there really isn't any choice, it's surprising how often we human beings fret and stew and worry over what is.  And with autism, there's sometimes a lot of WHAT IS going on.

It's not easy.  Never will be.  But it's manageable.  We've found ways to escape the isolation, at least occasionally.  We laugh.  We love our children.  We read.  We do our best, most every day, to accept what is, and to find joy where we can.

So, no.  No excitement over driving. No girlfriend. No real independence.  None of the things that most 16 year old boys have or want or enjoy.

In essence, no real voice.  Hence the reference in the title above.  To quote from a movie that I hear Stephen watching clips from pretty often:

Boyd: No fair! Louie didn't say "polo"!
Ella: Well, he can't talk.
Boyd: Can't talk? And he calls himself a Trumpeter Swan? I don't think so.
Billie: Louie can't help it. Father says he's, you know,
[whispering]
Billie: defective.
Boyd: Well, defect...if you can't talk, you can't play!

To the eyes of many, Stephen would be considered "defective."  To be fair, his brain doesn't work like it should.  Poor soul sometimes has a hard time making sense of the world around him, and he can't "play" like most kids his age.  

I've alluded to this before, but I think, thanks to David and to so many who love Stephen and feel fiercely protective of him, I've finally settled into the what is of his life: his innocence, his joy, his irresistible laughter, his precious face, the very lovableness of him...through these things, he finds his voice.  

Stephen, my sweet love, my baby, my son... I hear you.  

I love you.  Happy birthday, precious one.

April

*Update 4/2/15 at bottom*

Everyone is lighting it up blue and being aware of autism, so it must be April.

Disclaimer: the following is not uplifting.  It is not inspirational.  It is not full of grace or wisdom or patience learned over years of hardship.  It contains no acceptance.  No calm resignation of what is.

I think everyone is AWARE of autism by now, right?  I mean, sure, half the people I meet still think "Rainman" when I say autism, but surely very few people are unaware.

Here are facts of which I am aware, today, April 1, 2015:

• I hate autism.  Oh my god, how I hate it.  
• I am sick of living with the obsessive obsessive OBSESSIVE words and videos and sayings and phrases.  I'm sick of puffing out my cheeks and making certain faces a hundred times a day and it's still never enough.  
• I'm sick of Blue's Clues.  Dora.  Bob.  THOMAS THE TANK ENGINE.  I am sick of it all.
• I'm sick of changing diapers.  This is my fifteenth year of doing so, multiples times per day, every single day and I am TIRED of it.  I'm tired of carpet that smells like pee (or worse) if you sniff it too closely no matter how many times I've scrubbed it.
• I'm sick of medicines that seem to work...or do they?
• I'm sick of not being able to TALK to my son and ASK HIM WHAT IS WRONG when he's screaming.
• THE SCREAMING.  The self-injurious behaviors.  The martial arts helmet we had to buy to protect him FROM HIMSELF.  
• The unpredictability.  I come home from work and my clothes go here.  NO, they need to be hung up.  No, they need to be right HERE.  
• I'm tired of people offering "suggestions" and implying I don't try hard enough if I don't follow them.
• I always appreciate kindness, but the endless loop of "you and your husband must be very special, for God to have given you such a special child" is wearing paper thin.  We do not feel SPECIAL.  We feel cursed.  Let the parents of high functioning kids who are quirky and have narrow interests claim that God-given specialness.  Because let me tell you that there isn't anything special about a child imprisoned inside a malfunctioning brain, whose needs and care must always take the forefront, whose family suffers and is isolated and alone.
• "Have you thought of potty training him?"  SERIOUSLY?  I can't even go on here, but other parents of similar kids will get my incredulity.
• "Maybe it's time to find a group home for him..."  Again...no comprehension of what's involved in signing your helpless child's life away, trusting a non-verbal and beautiful child's safety and well-being to total strangers - NOT TO MENTION that it's not quite as simple as picking up the phone: "Oh, hello, loving and amazing autism caregivers!  I believe we are ready to check Stephen in to his lovely room where he'll be engaged, safe, and happy!  See you on Tuesday!"  Please.  GIVE ME A BREAK.
• Finally, on this, the first day of "autism awareness month," I am aware of the following:
• No matter how hard it is, no matter how piercing the screams, how repetitive the quotes from Thomas become, no matter how particularly we must select certain items and place certain items and eat certain items from certain bowls...I know in my soul of souls that Stephen is the innocent.  He was born the way he is, it just took a while for it to emerge, and I have no idea how life looks through his eyes.  I don't know what his favorite color is.  I don't know what he dreams.  I don't know how songs sound to him - if it sounds "off" or if his speech is just too affected to pronounce certain words.  I can't imagine what pain he feels when he screams, when tears course down his cheeks - especially when it happens out of the blue, like last week when I took him to IHOP.  And he had a meltdown, full-fledged...screams that would pierce your eardrums, in a packed-out restaurant full of post-churchgoers.  And they stared.  And the entire restaurant went silent.  I couldn't help my child.  I couldn't leave because that would make it worse.  I sat holding Stephen's hand and crying uncontrollably.  My thoughts went somewhere along the lines of: "Oh dear god, whyyyyyy?  Why here?  What is WRONG?  WHYYYYYYYYYY?"
• All that said, there is no blame to be placed on my man child's admittedly broad shoulders.  David, Kerry, my mother, Stephen's teachers and aides, and I all do our best, every day, to care for him lovingly.  I think most days we succeed, after any storms have passed and the screams are replaced by ecstatic giggles (as if a switch was flipped).  Then the exhaustion sets in.  Mental, emotional, physical.  All of me, every part of my awareness, cries quiet, hot tears as I huddle in the dark bathroom, face buried in a towel and really just letting it go.  I'm sure every one of us who care for Stephen have our moments of breakdown and dread.  
• People tell me that they admire us. They don't know how we do what we do.  That's the thing...we DON'T do very well in some ways.  We love each other, and we support Kerry's amazing musicianship but overall we are stuck in rigid patterns, afraid to venture out into our own neighborhood because what if Stephen...  Afraid to invite people over because what if Stephen...  Unable to take a quick drive to the store without sneaking and planning because...Stephen.
• Yet...there is a joy beyond comprehension when he's happy. It's otherworldly in its intensity at times, and while we obviously welcome smiles and cackling laughter after a bout of screaming, it's still...odd.  Cute, but odd.  The way he plays is the way a toddler plays.  No video games.  No bugging his big brother for rides.  Nothing is like I dreamed.  He'll never go on a date, or talk to a girl, or live independently.  EVER.

I truly don't know what the future holds.  There are waiting lists for adult care and services (such as they are).  If I was a millionaire, I could plan out his life and make sure he would always be okay.  But I'm not.  And I can't.  I fill out forms and do interviews and look and look and look for answers.  I try to solve insurmountable problems.  I try to work and keep life going at home, when most of the time I don't have more than a few minutes to myself, or time to spend with the husband who shares my life and the care of both of our sons.

I'll close with what I found myself sobbing into the hem of the bathrobe that hangs on a hook in my bathroom.  What began as incoherent blathering, tears dripping onto my knees as I sat there, shifted into equally incoherent phrases and whispered pleas (to whom?)...but the last thing my subconscious shouted in a loud whisper was, "I just want a little normal*.  And I'll never, ever have it."

Update, 4/2/15:

*I misused the word "normal" here.  While posting in a highly charged emotional state is a great way to get gut feelings out there, it's not exactly the ideal conditions for clear and accurate writing.  Therefore, I wanted to amend my post.  What I want, what any of us wants, is peace, warmth, love of family and friends, and to live life fully and well.  Today, after a night of sleep, and waking up a happy boy who also slept well, I can say unequivocally that I do, in fact, have many of those things, more often that I realize.  What I really should've said is that I just want a little...cure for autism.  I want a little life without autism.  And, while I doubt I'll ever, ever have it, I still have much to be grateful for.  I've learned a lot about myself and what it takes to try to live and "joyfully participate in the sorrows of the world," my thanks to David and Joseph Campbell for this concept.

A Growing Season

This morning I sat curled up in a corner of the couch, sipping coffee, writing in my journal, thinking over the past few days, and realized I was mentally chastising myself for not posting an entry on the 15th.

So I missed posting a birthday blog for Stephen.  This year we actually celebrated Kerry's 17th birthday (which was on the 11th) on the 15th, while Stephen was enjoying a visit with Mamaw and Papa.  It just worked out that way, especially since we stopped having a specific party or celebration for Stephen. It continues to be a relief and a mercy for all involved that we made that decision.  No cake, no presents, no hubbub that bewilders a boy who doesn't understand.  It's absolutely the right thing to do.  Or not do.

So, as I tried to let up on the self-criticism, I realized that certainly I could post on the 18th.  I'm way too picky and hard on myself about things that I shouldn't be...

And I want to be more conscious of writing about the good things that happen on the mountaintops of our lives, not just slogging tearfully through those dark valleys.  So, in honor of Stephen's 15th birthday I want to share some things about a day we spent together.

A little background: Stephen has (unlike many severely autistic kids) been to the dentist quite a few times over his young life.  The very early visits, when he wouldn't sit in the dentist's chair or really open his mouth, when young dental students crawled around on the floor trying to get a glimpse ("Umm...I don't SEE anything of concern...") were challenging and ultimately didn't really accomplish too much.  We moved on to visits at different offices that were all about the struggle to get him to take Versed (once or twice even having it put down his throat via his nose) and onto the papoose board made for a child half his size so he could get a rudimentary cleaning, or else I practically laid on him while his teeth were cleaned as well as possible.  Exhausting but definitely more purposeful.

But then we found a dentist who truly understood our struggles and our desire to take care of Stephen's teeth, whose patience (and that of his staff) is endless and abundant.  

He suggested at our last (papoosed) visit that we schedule a sedation visit to Children's Hospital, during which Stephen could comfortably rest while a really thorough cleaning was done, x-rays could be made (a first) and possibly have sealants put on his molars as a preventative measure.  After much planning and paperwork and a quick check up with our pediatrician, we arrived at the hospital last Friday (the 13th...) and were quickly put into a room.  Stephen was calm and happy and began asking for Chick-Fil-A 23 seconds after we got into the room.

Typically I would do my best to leave him dressed, just as you see here, to avoid upsetting him.  But...he has been doing better lately with change.  I'm practically crossing my fingers as I type that for fear of jinxing it.  But the fact remains that he IS handling certain things more calmly: being told "no" to things he picks up at the store, etc.  So, I decided to be brave and, after he got settled with his iPad, I told him we were going to put on some other clothes to see the doctor.

And he let me...

He also let me wrap a blanket around him because the room was cold.

He took his Versed by mouth without fighting.

He let multiple people come in to the room without telling them to "go 'way."

He let multiple people put strange paper things around his arm, and he DID NOT FIGHT.  Or scream.  Or hit himself.  Or even cry.  The wearing of these bracelets is unprecedented.

He giggled.  He gave me kisses.  I crawled up on the bed and rubbed his back and hummed songs and smelled of his hair and gave him a million high-fives for being such a sweet boy.

And then they came to roll him down to the OR.  I walked beside him all the way, and he clung to my hand.  He was groggy, yes, but he wasn't sure about this...and then they took him through the doors to the OR and I watched him as long as the doors took to close.

I went back to his room and waited, trying to develop my powers of telepathy or teleportation, wondering if he struggled with the mask as they put him to sleep, or if he cried or said Mama.  It was a long hour, watching various kids and parents come and go on the one-day surgery floor. Finally, the dentist came and talked to me, and everything went perfectly: no struggling, no fighting, no crying...no need for sealants after going 15 years with minimal oral hygiene and NO cavities, they got x-rays and did a really good cleaning...the dentist was amazed at the lack of plaque and build-up.  It's all that water he drinks, in my opinion.

And then, I heard a bed being pushed up to the room where I sat, and I saw one sock foot hanging off the end of the bed, and it was a foot I recognized.  He was back, sleeping peacefully and well.  

After the nurses parked his bed and left, I spent at least another hour with my chin propped on the side rail, just looking at him - this boy who should be pestering us to get his permit, following his big brother around, maybe playing football and discovering girls but is instead trapped in the world of autism...and I felt peace. Again, to revisit something David reminded me of that I mentioned in my last blog: sometimes, it's just the way things are.  Fighting against what IS brings suffering.  Yes, there is pain.  There is sorrow and sadness and disappointment.  But there is undeniable joy in this child's existence and we treasure that.  

I am so proud of how he handled the sights, smells, strangeness, and discomfort of this day. He was victorious, and THAT is worth celebrating.

This last photo is my favorite. It somehow encapsulates the emotion I feel when I look at Stephen, and realize what an accomplishment it was for him to not only make it through a difficult day but to smile and laugh at the same time.  My heart is broken and then mended by these soft, small hands.  He endured discomfort and change with a grace that is beyond his ability to understand.  He is and will always be my baby.

The way of things

This morning, like a thousand mornings before, I put my arms around a 200-pound boy's shoulders, as he started to lift himself up off his bed to get cleaned up, changed, dressed, and ready for another day.

As I helped him sit up, his chubby cheek pressed against mine, and for the briefest moment I could've sworn I was feeling the perfect, satiny cheek of a newborn baby...the faintest scent of the vanilla lavender lotion I still put on him after his bath wafted up, and in that moment I loved him more than any mother ever loved her son.

A few nights ago I walked into the warm kitchen, darkness peering in through the windows but making no dent on the coziness inside.  Stephen sat at his spot at the table, playing with the miracle otherwise known as "features iPad."  His head, sporting a fresh crew cut, was uplifted and tilted slightly to the left - it's his dreamy, faraway, enchanted look.  He gets that look when he's focusing on listening rather than looking, and those of us who live with him know that look well.  In an instant, I took all this in - just after his bath, sitting there dreaming, slightly swaying to the music from the iPad, his t-shirt neckline shifted a bit and one pudgy shoulder peeking out - and in that moment I felt fiercely protective of him, of his innocence and purity of spirit.  Had some villain burst in, intent on doing Stephen harm, I would no doubt have fought him bare-handed and won, so intense was this protective instinct bubbling up from my heart.

In the last few weeks, Stephen has had some of his absolutely priceless and joyous non-stop giggling fits...especially if his dad or I figure out something he's saying and are able to repeat it back to him, or if he watches a certain Thomas video clip over and over and finds it especially funny...and in those moments, his delight and happiness are engaging, hilarious, precious and fun.  He laughs that belly laugh, barely able to speak, and one finds it hard not to join in, and just love him to pieces.

And then.

The other day, David and I came home after a long day.  Stephen had had a FANTASTIC day at school (ZERO SIB's) and he had laughed and giggled with his Mamaw all afternoon.  Not five minutes after my mother left, the TRANSITION problems set it, and we had a meltdown. Not a thirty minute horror, but still, even thirty seconds is bad enough...  And he ended up in his room after slamming the door, screams and slaps plainly heard regardless.  I dragged myself into the kitchen, all the lightness gone from my spirit, and I complained to David, "WHY does he do this after being great ALL DAY?  Why do I always get the bad stuff?"  (which is not even true, everybody's had their share, and could I get some cheese with that whine?)  

David looked at me and said, "...Because that's just the way it is sometimes."

And so it goes.  It IS just the way it is sometimes.  Sometimes it's just plain awful. Sometimes I want to apparate the heck right outta there.

But then I would miss those baby cheeks, those soft little hands that pat my face, that little voice that tries so hard, that whispers "I love you!" to me, to his daddy, his brother, to restaurants he loves as he's leaving :)...his new habit of announcing things as they happen, and praising things for doing a good job: "Yoook [look]!  here comes grilled cheese!" and "Well done, socks!  Well done, shoes!"...the sweetness of him sleeping, looking more like five than nearly-fifteen...the laughter, the eyes that crinkle at the corners like his mama's...and the honor to be found in protecting him and loving him as best we can, for the rest of his life.

Sometimes, that's just the way it is.

Autism Awareness?

I wasn't sure I'd ever write here again.  I'm still not sure.  I'm typing hesitantly, feeling it out.  

But here goes: the other morning on my commute to work, I looked at the four cars immediately surrounding me as we zipped along the interstate, and each of the four had an "AUTISM AWARENESS" sticker or magnet or car tag.  And I thought to myself how UNaware so many people are about what's really true about autism.

So, I find myself wanting to talk about some things.  They are not happy things, or lovely stories, or charming anecdotes.  Not this time.  These are ugly and sad and unpleasant things.  If you are easily offended by profanity or have a weak stomach, then please stop reading now.  I'm not a "curser" by nature, unless the situation warrants it...

The 12 year battle against autism rages on.  RAGE being the optimal word.  Stephen had a fairly decent summer at a new school.  Certainly his behavior was much, much improved compared to last summer's hell.  There have been transition issues, of course, and having our school system change from a county system (with county-wide supports for special needs) to a city system that was rushed into existence with many "bugs" to work out (and I'm being very kind in this description) hasn't been an ideal situation for Stephen.  I can only hope things will keep improving.

As a family we are in a perpetual state of uneasy alert, afraid of tripping the hair-trigger of Stephen's fragile equanimity.  We still sneak and devise ways to avoid awakening the obsessive-compulsive beast.  It works, sometimes.  When it doesn't, it is a nightmare of screaming, hitting, and mental torture.  Watching this baby-faced boy in obvious torment tears at your soul, at the fabric of your spirit, and those wounds fester and resist healing.  It sucks and makes you want to run into the night until your legs won't carry you any further.  We followed our doctor's advice to try to increase medicine dosages to a "therapeutic" level to treat OCD.  The increase caused him to be erratic and the SIB increased.  So back down we go...

With puberty comes some other challenges.  Diapering challenges.  No, he's still not potty trained.  Not even close.  Doesn't seem to have a clue.  So, we spend thousands every year on supplies.  His bed sheets are stained though they are washed and washed and rinsed and rinsed.  His carpet has stains.  It is HARD to clean him up now that things have changed in his pubic area.  It SUCKS.

Because I have grown so very weary of all the AWARENESS that is being spread about autism, cancer, whatever...because I'm tired of people not getting how horrible this damned disorder is...because THIS is the reality for families like mine, I just have to tell you how it really is.

This is not pleasant.  I have not spared the gritty language.

A few mornings ago, I went in to get Stephen up for the day.  I'm used to stripping his bed.  I've got it down to a science.  Three waterproof pads to protect the clean layers underneath.  Switch out bedspreads.  Spot clean carpet, use Bissell spot-lifter occasionally.  Spray Febreze if needed...  But on this particular morning, Stephen had diarrhea.  My giant baby boy stood in the middle of his room, covered in his own shit, and I watched helplessly as it POURED out of his shorts, down his legs, and puddled - yes, PUDDLED - on the carpet.  (I've since started putting waterproof mats on the floor beside his bed at night).  After years of cleaning up messes, I gagged as I tried to figure out where to even start.

My child, his mind stolen, his awareness minimal, his behaviors so often uncontrollable, stood there, covered in this mess...smiling at me.  Looking at me trustingly.  My mind RAGED.  I'm so fucking angry that THIS is his life.  It's my life.  It's David's and Kerry's lives.  And it is just so incredibly hard and sad and messy and IMPOSSIBLE.

Stephen also overflows his pull-up when he pees - not every time, but almost every day.  I can be standing at the stove cooking and suddenly he's beside me, jabbering away as he does.  Then..."Sqqqqqueeeakkkkk," his foot slips across the floor, which has suddenly become Lake Pee-pee.  Gallons of liquid spreading across the floor.  So then you have to strip him, grab towels (kept handy these days) and clean the floor and him.  Sigh.  More laundry.

To the people blithely spreading AWARENESS; to the people sporting those dandy puzzle piece magnets on their cars; to the parents of kids with HFA or Aspergers: I know unequivocally that you have your own set of challenges.  I've said it before - I understand you don't necessarily want your child cured and that you're very happy "spreading" awareness and so forth.  But please do not lump my kid in with your wholehearted acceptance of the quirks and irritations that you deal with...  I wish Stephen would get better.  He's NOT better, he hasn't improved in over a decade in many ways...not really.  He is a helpless toddler in the body of a man.

Right now, today, things are back to a bit of an even keel.  The last few days, the med level seems to have stabilized at it's "old" point and we have our laughing, silly, hugging-and-kissing man-child back.  But the possibility of the middle of the night upset stomachs, the unavoidable changes that will result in hitting, the frustration of being in a world he can't possibly really comprehend - those things lurk under the surface.  Always.  It takes the rest of our family propping each other up to feel just sort of okay.  Having David and Kerry helps - we all share the trauma, but we do laugh a lot too.  Have to.  This life is not what anyone wanted and we would all trade it in if we could.  But we can't.  

Please, though, the next time some perfectly coiffed "news" anchor blathers on about a kid with autism going to college or nailing the Star-Spangled Banner at a hockey game, remember: they can CALL that autism, but THIS is what autism is really like.

Regrets

It's been so long.  Too long?

I routinely get emails telling me that there's a new blog comment waiting to be moderated.  Invariably these are spam comments hawking designer purses or something.  I always check, though, just in case.  And this past Saturday, there was a real comment from a reader named Karen, who remembered Stephen's birthday.  Her comment read:

"Happy 14th Birthday, Stephen!

I remembered this post from last year and have missed your posts as of late. Thank you for all that you have shared over the years ... it really helps us moms out here going through similar circumstances.

I hope all is well in your world :)"

Karen, if you're reading this, please know that I am so touched that you remembered Stephen's birthday, and that you posted this comment.

I didn't put up a blog post on Stephen's birthday this year.  In fact, other than the "draft" post I've been tinkering with since early December, I haven't posted since July 2013.  And I regret that. 

I mentioned this to David and he said, "Well, maybe you don't have anything to say," and at first I was inclined to agree.  But that's not totally true.  The problem is, I have the SAME things to say, over and over, and I feel like people get sick of reading as I pour out my sorrow and woes and so forth...  And I get tired of having those thoughts.  And I feel guilty for having them, and guilty that I'm not somehow making more of my life than I am.

Mostly I'm just tired.

We didn't celebrate Stephen's 14th birthday.  It passed like any other Saturday, and that's for the best - no sensory overstimulation, no confusion over gifts that appear for seemingly no reason, no party.  Stephen is much the same, just taller and bigger...still a baby or toddler in almost every way - same RAGING separation anxiety, still riddled with OCD and all that entails.

I recently ordered a laptop for myself and hope to get back to writing in some fashion, whether it's on here or elsewhere.  I do appreciate the people who have read this blog and reached out - it truly has meant so much to me.

And maybe I'll post again soon...

Accepting uncertainty

Many times over the last year I’ve decided that my blogging days are over.  In typical fashion, though, I have a hard time admitting that I can’t or won’t do something.

I spent a half hour recently going back to the beginning, to my first entries in 2007 and following.  What struck me most intensely was the anguish I so often poured out, the trials and tribulations, the discouragement and frustration…and, even though the last six months have been without a doubt the most challenging of Stephen’s life, seeing those old entries so full of pain reminded me that we’ve been through many valleys already.

One entry from the past was titled something like “The 4’11” Tyrant.”  Yet, the way Stephen acts now, in the grip of puberty and hormones and god knows what else, I feel ridiculous for referring to him as a tyrant all those years ago.  Talk about a perspective shift…  Of course, he’s no longer 4’11”.  He’s very nearly my height, 5’7”, and his weight has steadily climbed upward, thanks to the side effects of Risperdal.  We continue to rely on that drug to keep him calm – at least most of the time – and while we try our best to keep his servings small, he is a carb-fiend and good luck to anyone who thinks they can improve his diet.  We’ve tried.  He was stubborn and set in his ways years ago.  Now multiply it times 100 and you’re getting close to what we deal with now.

The sudden onset of fierce OCD right around his 13th birthday has shaken our already fragile world to the foundation.  We have been to 4 doctors, at last count, and are on our second try with meds to treat OCD.  Of course, the meds must be started slowly, be allowed to build up, slowly increased to “therapeutic” levels, and THEN, you hope they work.  If not, then you have to slowly decrease, try the next suggested medicine, and start all over again.  Meanwhile the tantrums continue.  The head-hitting continues.  Not every day, no.  Less frequently than February/March?  Maybe.  But the idea of them, the possibility of these horrible fits, lurks under the surface constantly.

We are practically levitating, we are so carefully walking on eggshells.  Sneaking in and out of the house whenever possible, to avoid the separation anxiety.  Sneaking Kerry downstairs to drum when Stephen isn’t looking, closing Kerry’s bedroom door and pretending he’s in there – even though the drums are clearly heard – somehow keeps Stephen from screaming and demanding “IS KERRY????!!!!????” and hitting himself.

And underneath and beside and entangled with it all are my inborn neuroses.  I was raised by a nervous mother and I learned my lessons well.  Even when there is peace, my heart races, trying to prepare for the next bout.  I worry all the time.  ALL. THE. TIME.  I worry about things that may not happen.  BUT WHAT IF THEY DO?  Surely my fixation on future possibilities will ease the shock when/if they happen!  It’s just smart planning to ruin your life and the lives of those around you with permanent nervousness and tension.

Lately I’ve been facing the reality of what I’m doing to myself and to my family with this…STUFF.  It is incredibly hard for me to even begin to contemplate letting go of my worry/anxiety combo.  I have such a twisted and bizarre sense of loyalty to it.  Somehow for years I’ve justified maintaining this mentality – pointing to the admittedly few times things have really gone badly as proof that I was right to worry all along.  Over the last few months I’ve started to see clearly how wrong that viewpoint is, and what a waste of precious resources it is to try to exist like this.

Yesterday, I was fretting and stewing about how best to get Kerry out of the house for his first marching band practice, doing my best to foresee every possible issue or problem, how I would handle it, what I would do if the first thing I tried didn’t work, carrying that thought all the way through to the conclusion I typically jump to in my mind, which is:

If he won’t calm down, I give him med A.  Failing that, med B.  Failing THAT, call the doctor.  If that doesn’t work, I have to take him to the hospital.  Oh god, how would I ever leave my helpless man-child in the care of strangers?  What if they won’t let him keep his iPad?  How many diapers do I take? Would they restrain him?  What about work tomorrow?  What if THEY can’t help him at the hospital????

As humiliating as it is to admit, THIS is the madness that shoots through my brain like an electric current in the space of mere seconds.  This lunacy saps my energy, takes away my appetite, shuts down my common sense, and robs me of the moments of happiness that still exist…not to mention the very obvious effects on those around me. 

It has to stop. 

Life is hard enough, taken at face value, without the addition of these mental meanderings…honestly, as I read it again it might well be something someone would babble in a fever delirium.

People like me think that worry is helpful.  That anxiety serves a purpose, that we can somehow foresee the future and prepare…it’s all nonsense.  While a certain amount of awareness of outcomes is smart and practical, it’s a far cry from the storm in my head. 

I’ve been this way as long as I can remember, and somehow have muddled through up to this point.  Maybe it’s my age, maybe it’s the sharp increase in the difficulties we are experiencing, maybe the clear impact it’s having on me, my health, my family - who knows why I’m forced to face the absolute futility in continuing this way of “life” now, but it’s happening.  I am using mental images of the color red, of stop signs, etc. to try to halt my damaging thoughts, to try to throw off the worries when they come creeping, or sometimes RACING in.  I’m working hard to stay in the moment, to be mindful of THIS moment…and this one, and the next, letting things unfold as gently as possible.  To allow myself to be aware of the future only in a general sense but refusing (often over and over and over) to start sending tendrils of thought snaking their way into the uncertain future.  Part of my task is to radically accept uncertainty – because the alternative is simply impossible.

I’ve always worried about the uncertainty of what is to come, always allowing my thoughts to slide into negativity, sure if I expected the worst then I’d be prepared, or at the least I’d be happy if A BAD, HORRIBLE, DEVASTATING THING didn’t happen.  Now, I must accept the pure, unvarnished nature of life’s uncertainties, and try to believe two things: 1) Things just might be okay in the future and 2) If they’re not, I’m not alone, and, along with the people I love, I will survive.

Growing pains

Since my last entry, we have been through hell.

Two months ago Stephen turned thirteen.  In the ensuing days it has become clear to all concerned that Stephen has begun going through puberty, and this “rite of passage” is a nightmare for our family.  The “temper tantrums” I mentioned two months ago have escalated into brutal meltdowns – crying, screaming, stomping, pulling hair…and most heartbreaking of all, hitting his own head with his hands until he cries in pain.  Unless you’ve been through this, or seen something similar, you may not understand.  I can’t find the words to express how devastating it is to know that your child in such emotional pain that he is compelled to cause himself physical pain.

It is awful and horrible and it shatters our heart and souls…on those evenings when the meltdowns go full bore, the walls begin to close in, the very air is hard to breathe, and peace and hope and joy seem impossible.  As I wrote in my journal recently: “Happiness is for other people; not for us.”  Twice I have nearly wrestled Stephen into the car, thinking wildly that I would drive him to a hospital and storm into the ER: “TAKE THIS CHILD AND FOR GOD’S SAKE SOMEONE DO SOMETHING.”  David’s calming hand on my shoulder has stopped me, and he has been able to get Stephen settled, and life goes on, after a fashion.  We walk on eggshells.  We consider EVERYTHING before we do it.  Will this bother him?  Are we ready to deal with that or this or the other thing?  It's no way to live.

I have continued my decade-long quest to find help – and we are finally meeting with some success: call backs, appointments set, in-home services coming soon – and I am thankful, of course.  In the end, though, there’s always the underlying pain, the knowledge that in some ways he’s never going to get better, he’ll always be a big, overgrown toddler..

Stephen also has developed severe OCD symptoms.  Every little change bothers him.  EVERY LITTLE CHANGE. 

My idea of what goes on in Stephen's poor head:

Daddy takes his glasses off to clean them but no NO NO. Daddy WEARS his glasses and I must stand here and fret and possibly cry until he puts them back on. 

Daddy is outside cutting grass?  I can SEE him but he is not HERE where I can keep track of him so NO NO NOOOOOO.  I will stand at the window and ask 'Is Daddy?' every ten seconds.

The paper towel is hanging down off the roll.  That is not how it goes.  I will stand across the room and point and grunt and squeal at Mama until she rolls it back up.

My pants are wet but they are the pants I have had on all day and I do not want to change.  Wet is bad but change is worse. Mama's pictures about dirty wet clothes make sense but change is BAD and I cannot change.  It hurts my head.  I will hit my head because the world hurts me and my body feels different and I don't like it.

Mama walked downstairs.  IS SHE GONE? I know 'be right back' but I don't like 'be right back.' I like everybody where they belong. 

And I could give a hundred more examples.  We've always known autism was bad.  We've always had struggles.  But nothing could have prepared us for this.

We have an appointment with a new doctor in a week.  We hope to talk about changes/additions in meds and possibly get Stephen some help as we live through this harrowing time.  In my head, I think of it as "The Dark Time."  The darkest yet.

Love you forever

Any mom reading this is familiar with the children's book Love You Forever.  The premise is a bit on the ludicrous side if you look at it from a certain perspective - how weird would be it be to climb up a ladder to your grown son's room after he's asleep so you can pick him up and rock him "back and forth, back and forth"?

However, as I look at my life at the present time, I'm starting to see that the story, in fact, may be pretty close to what the future holds for me and my "baby."

Today Stephen is thirteen years old.  He is only a couple of inches shorter than me, and outweighs me considerably.  And he still sits in my lap, and we rock back and forth.  As long as I'm living...my baby he'll be.  Literally.

My thirteen year old son still isn't potty-trained.  He gets tummy aches and cries like a colicky newborn.  He throws temper tantrums like a toddler.  His face is still babyish, his hands small and soft.

This picture was taken about a month ago.  He cuddled up to me and I was struck by how young he still looked.



Even though today is his birthday, we're not having a party, or even doing anything different.  This is the first year we've done this, but after thinking about it a lot, this is the best way.  We just got over Christmas and its barrage of sensory input and presents out of nowhere.  Stephen still gets a weekly "surprise" from the mailbox, so really, we celebrate 52 weeks a year.  He doesn't eat cake, and having parties just stresses everyone out.   So, we'll defy convention, and even though David and I whispered, "Happy Birthday" to our son, that will be the extent of the celebration this year.

I love you forever, my little man-child.  I will hold you and rock you back and forth, back and forth, as long as my arms have strength.



The Times Between

The little village looked as if it had grown up naturally, part of the surrounding forest.  The villagers loved their home, and nurtured it carefully and tenderly, aware of the treasure they possessed.  Babies were born, laughter rang through the quiet village streets, little events brought changes...and life moved on.  The children grew and changed.  The sun shone, rain fell, winds blew, heralding the arrival of each new season.

Then one dark, chilly morning, the villagers sensed an ominous presence in the air.  A great heavy mass of black clouds hung low, bizarre lightning flickered, and the winds howled.  Unfamiliar with anything but the gentle rains that came and brought life, the villagers huddled together, frightened.  They ran for shelter, terrifed beyond anything they had ever experienced.  The storm ripped and tore, moments felt like hours...every window shattered, every tree bent and bruised, torrents of angry water flowed through the streets.

Just as quickly as it had come, the storm dissipated.  Ribbons of blue sky appeared, mocking the darkness that had covered the sky so completely moments before.  The sun emerged, washed clean, and shone insolently over the wreckage of the village.

Dazed, the villagers began to appear, many shaking their heads in confusion.  Children raised their hands to the sunlight, recovering their smiles and giggles quickly - rebounding absurdly fast as children do.  Adults were slower to appreciate the warmth that belied the devastation that lay in front of them.

A meeting of the elders that night brought about plans to prepare for another storm such as the one that took the village so completely by surprise.  One man was appointed to watch the skies from a nearby hill, charged with alerting the village should those black clouds ever appear again on the horizon.  A group of women were put in charge of gathering up children and animals if the alarm sounded.  Every person was given a job, and each was determined to do that job, and protect themselves from future dangers.

In time, the alarm bell sounded.  Panic set in, but this time the village was prepared.  Shutters clamped shut, everyone found a safe place...the winds howled, the very foundations shook.  Trees were uprooted, stones hurled through the air as if thrown by a malevolent giant.  The village withstood the blows, but still some were injured.  Bodies were bruised and broken.  Homes destroyed. 

All the preparation...the plans, the safeguards... Nothing could stop the storms.  The damage was swift and sure.  The adults shook their heads in sorrow.  Their world was forever changed.  Even when the sun came out, as the sun always does, the elders eyed it distrustfully.  When the children danced and laughed in the golden rays slanting through the forest trees, their mothers worried just a little more than they did before.  What if the sky lowered blackly and the winds began to scream again?

Even when the sun hung brightly in an impossibly blue sky, the signs of the storms were ever present.  Foundations were weakened.  Trees lay dead on the forest floor.  Instead of windows letting in the light, there were heavy shutters, keeping the houses dark. 

In the Between Times - and there were many - the villagers tried their best to enjoy the peace and harmony.  But the memories of the Storms were intensely real and never quite left their consciousness.  And life, though pleasant at times, was never the same again.

Watch this space...

After a lengthy absence, I have plans in the works for updating my blog.  In part, I will be adding a section that highlights autism "tools" that I've found or created to help Stephen with certain situations over the years.

I'm still trying to cook good food, at least insofar as my budget allows, so there will probably be some foodie stuff sprinkled around too...

I'm posting this simply to try to spur myself on - both my husband and my very dear friend M have encouraged me to share some of my "inspirations" for trying to help my baby boy navigate a world that must so often seem foreign to him.  So, I will.  Maybe something I've done will help someone else who's struggling.

So...in short...stay tuned!

Mirage

After an especially trying weekend, I sought what I refer to in my head as my “haven” –  propping myself up against pillows on my bed, in the bedroom farthest from the TV, the living room, the kitchen, and the noise Stephen generates constantly.  But, he found me, flopping onto the bed cross-wise, one babyish hand finding my foot and patting it in that instinctively sweet way of his.

He’s stretched out, jabbering away, his t-shirt too short (as most of them are now), and I can see the jagged pink stretch marks on his belly…ugly reminders of his poor diet, his huge pharmaceutically-induced appetite, his inability to understand limits.  Autism, the wild beast that invaded our lives a decade ago, persists in trying to tear us apart, and it has left its mark on my son’s skin as it tries to claw its way out.  This evil, wrong presence – a million miles away from the happy, feel-good kind of autism that has parents lauding their child’s “differences” and appreciating their “uniqueness” – has terrorized my family, and there’s no weapon that can be used to defend us.

We have bound ourselves together to fight it, but inch by inch it creeps in.  We are trapped, isolated, a bizarre island in a sea of unhappiness, and it hurts.  It’s lonely.  It’s impossible to understand unless you live a similar life, and there just aren’t many people who do. 

At this very moment, as I type, Stephen is back on the bed, his round, soft cheek resting against my arm.  He giggles.  “Band-itch,” he says.  I am silent, thinking.  “Band-itch, peeze.”  I have no idea what he’s saying.  My heart breaks for a child who can walk and eat and sleep, and in most other ways is unable to conduct his life as a human being…trying to talk, staring earnestly into his mother’s eyes as he sweetly says, again, “Band-itch, peeze.”  As I shrug and say, “Baby, I don’t know…” he once again gives up, not able to communicate, and so he retreats back into his mind, jabbering about Thomas or Percy or whatever.  I got lucky this time.  So many times this kind of non-communication results in screaming fits.  What a wilderness of confusion his brain must be.  It shatters me to imagine his bewilderment with the world.  I’ve been a soggy, crying mess over the last 12 hours.  Two more tears trace paths down my face, and Stephen reaches out a finger to catch a drop off my chin, and he wonderingly looks at it, then wipes his hand on his shirt.

The future scares me.  Stephen’s puberty looms like another monster, an unknown enemy lying in wait.  Our older son starts high school in a week – how is he doing, really?  He told his dad last night that “this stuff” does get to him, but he doesn’t show it.  He just goes downstairs and pounds on his drums.  Have I failed him?  Is he destined to run far from this home that I’ve tried in vain to make tolerable or even happy at times, taking memories of chaos and noise and pain?  It is more than I can bear.

For years, I have worn a silver band engraved with “HOPE” on my right hand.  I bought it at the first autism conference David and I attended.  Those snake oil salesmen/vendors are nothing if not purveyors of hope, mainly of the false variety.  Regardless, I have always gained a miniscule particle of strength when I’d glance at the ring on my finger.

Today I took that ring off.  Right now it hurts more than it helps, because hope seems elusive, mocking me as it swoops in only to disappear when I reach for it.  Oh, there are times when my eternal, cockeyed optimistic soul believes that happiness is possible: the scent of newly mown grass that transports me to childhood, Stephen’s wild dancing and laughing moments, Kerry’s enthusiasm over music, David’s constant ability to make me laugh till I cry, a perfect sentence in a book I love…

But my well of hope has run dry, for now.  I’ll find a way to replenish it, but right now it’s empty.  I’m afraid, I’m discouraged, I’m out of ideas.

Years ago Kerry gave me a necklace that has a charm on it: “#1 Mom.”  He honored me by considering me a great mom, but I have a hard time convincing myself of it during dark periods, like now.  Today I put my hope ring on that chain, and hung them both back on a hook.  In sight, not packed away, but not to be worn…not while the beast snarls at the door.  I’ll keep what’s precious out of harm’s way, with the vestiges of stubborn endurance I have left.  We may be hanging on by a thread, but in my heart I believe the thread is made of something just strong enough to withstand the attack.

For Sissie

My sweet, loving, laughing aunt Joyce (“Sissie” to me and to many) died quite unexpectedly last night after a brief illness.  I was there, in the room, with a host of family members.  It was a heartrending yet precious thing to be there as Sissie quietly left this life.

I will miss her every day.

Even though I didn’t get to see her as often as I’d have liked, I did talk to her frequently, just to say hi.  She was always my consultant when I had a sticky cooking issue or question.  I’d call her up, tell her what was going on, and she always knew what to do, how to fix it.

She has been a constant fixture throughout my life.  She worked at the same university my mom did, so childhood summer days spent “working” with my mom always involved a trek across campus to visit Sissie.  I always felt so independent on those walks, and so comfortable visiting her office.  Sissie worked in the housing office of the university – she was famous amongst a certain group of “problem children” who were never happy with their dorm room assignments.  She ruled with an iron fist, and rightly so!  When David and I first began dating, he went with me to a cousin’s wedding.  It was his first time to meet many of my extended family.  He saw Sissie from a distance, stopped short and said…”Wait…she is your AUNT????”  Turns out he had met Sissie already, albeit in a very different context.  That always made Sissie smile when she would remember it in later years.  She knew David on sight, and immediately remembered who he had roomed with, in what dorm, and what trouble he and his roommates were. 

Above all, Sissie loved her family.  Her son, her daughter, her grandchildren, and great-grandchildren, her brothers and sisters, and all of us nieces and nephews. She loved unpretentiously and fully.  She adored my sons, always remembered their birthdays…Kerry and Stephen’s school pictures had a place of honor on her shelf, right alongside the photos of her grandkids and great-grandkids. 

She was generous with her resources in every possibly way. 

Sissie was the quintessential wonderful Southern cook.  Her turkey and dressing would’ve won any contest, and she made pans of it every Thanksgiving to share with anyone who just couldn’t get the knack she had of making that delicious dish (ahem).  Another specialty of hers was tiny, bite-sized lemon tarts – creamy filling inside homemade pastry tarts.  These always showed up at Christmas, and I have very fond memories of the HUNDREDS of tarts Sissie made for my wedding reception years ago.  I can picture her now in her kitchen: barefoot, hair a bit disheveled from the steaming pots on the stove, singing to herself…

Women across the centuries have been the lifeblood of the home, the caretaker, the nurse, the comforter, the provider of meals.  Today, and every day that I endeavor to become a more loving mother, daughter, cousin…every day that I look for the fun in life, that I try to laugh a little more…with every meal that I put together in my kitchen…I honor a most precious Southern lady who succeeded in these ways and countless others..

Mama and Dooley and all of your family miss you.  I love you always, Sis.

Earth Fare, Desserts, and the Magic Chicken

I discovered that an Earth Fare store was opening in our area by accident.  I was looking up retailers for the amazing, wonderful Alabama's Organic Milk (buy it if you can find it…you will never switch back) and saw “Earth Fare – Hoover…coming soon.”  I had just seen this store mentioned on the 100 Days of Real Food blog and had filed it under “stores that we don’t have around here,” like Trader Joe’s.  So you can imagine my happiness to find an Earth Fare that opened May 30 in Hoover.  I joined their buyer’s club (free) and was able to print a coupon for a free whole chicken and a pint of fresh blueberries, to use if I spent at least $15.  That wasn’t hard to do, and I walked out of the store having spent about $60 but with a lot of good deals on things I would’ve bought anyway – bulk demerara sugar, organic roma tomatoes, my beloved Alabama milk, some Earth Fare brand organic ketchup, and quite a few other staples - plus a fresh chicken and some berries.  Free!

I vaguely recall trying to cook a whole chicken once, in our tiny apartment kitchen, and feeling totally overwhelmed with the task at hand.  So I was a bit nervous but had already decided to make the most of the freebie and cook it in a way that went right along with my real food commitment.  I used my slow cooker to make The Best Whole Chicken in a Crockpot.  I got it all set up before going out to run errands last week, and when I got home, the house smelled wonderful.  The chicken turned out perfect, and we had the larger breast meat portions that I “carved” (it’s a learning process) for dinner that night, the pan juices spooned over each slice.  I also made some quinoa with zucchini and artichoke hearts to go alongside.  So, that’s meal #1 from my Earth Fare free chicken.

I chopped up the chicken that we didn’t eat that I had “carved” (ahem) from the bird, and put it in the freezer to use for chicken enchiladas later this week.  So, there’s meal #2.

That night, I took the remaining…pieces…of the chicken – the bones and such – and put them and the onions that had cooked with the chicken back into the Crockpot.  I added a couple more onions, about 3 organic carrots, the rest of a package of celery, including the leaves, that I had in the refrigerator, one sprig each of my basil and rosemary plants growing on the deck, and covered all of that with water.

I turned the Crockpot on low and let it cook all night – almost 8 hours.

The gorgeous, rich scent literally woke me up the next morning…

Homemade chicken stock!  Nearly effortless and so rich and golden you wouldn’t believe it.

I got this idea from the 100 Days blog – and I didn’t have an appreciation for how simple it would be, and how gratifying it was to make homemade stock.

I got 9 cups of stock, total – packed up in 1 or 2 cup portions and put in the freezer.  Tonight we had vegetable soup made with the broth, and chicken enchiladas made from the rest of the chicken.

After I strained out the stock and removed the bones, I was left with very tasty vegetables and little bits of chicken.  I couldn’t just throw that out.  So, I chopped the veggies up in the food processor, added some water to a pot, and let it simmer.  I cooked some barley in another pot and added that.  Bingo.  Chicken barley vegetable soup that has supplied 4 lunches.  Meal #3.

So due to one free chicken, I got 3 meals (at least) and 9 cups of chicken stock for future recipes.  Not bad.

In the last week I’ve also made a bread pudding with whiskey sauce that was simply glorious.  It came from my old standby Betty Crocker cookbook, but I used whole grain raisin bread, real butter, organic eggs and cream, pure cane sugar and organic butter with the Jack Daniels for the sauce…and let me tell you that a tiny little demitasse-type dish of this pudding with a healthy dollop of whiskey sauce was just gorgeous and such a rich experience.  Sooooo much better than most desserts I’ve thrown together.  Again, there was a ritualistic aspect to serving these little portions, full of rich flavor and so satisfying.

I also made David a birthday cake with whole wheat flour, used coconut oil in place of vegetable oil, and made real chocolate buttercream frosting.  It was a huge hit – no one would’ve guessed it had wheat flour.  While I don’t plan on providing sweet desserts like this all the time, it was a delicious birthday cake, and it had none of the bad crap you get from boxed mixes and those little cans of frosting.  The cake recipe is here:  Whole Wheat Chocolate Cake and the icing one is here: Ghiradelli Buttercream.

I have lots more to share but I’ll stop there for now.  Happy eating.

Chilton County Peaches

My Earth Fare post is forthcoming…in the meantime:

Yesterday afternoon I had to run an errand, and on my way home I passed a little produce market that I’ve seen a hundred times.  I noticed a sign that wouldn’t have caught my attention 2 months ago.  Unless you’re a local Alabamian, this won’t mean anything to you – but the sign said “Chilton County Peaches.”  My car turned in to the parking lot as if under a spell and I made my way to the peaches sitting in their little baskets, soaking up the heat of the afternoon…the scent hanging in the air was sublime and I spent a lovely 5 minutes choosing just the right peaches.  The lady at the register sorted through them and declared two of them “too soft” and went to the back to get two better ones.  I love buying from small businesses like this.  Imagine caring about your customers enough to make sure that they are getting the best you have to offer.

When I got home, I added the peaches to my now-overflowing wooden fruit bowl that sits on the corner of the kitchen counter…there are onions hanging in a net bag, garlic and tomatoes, apples, bananas…  I couldn’t resist trying a peach, even though it was nearly suppertime.  I stood at my sink, and took a bite of the best tasting piece of fruit I’ve had lately.  I unashamedly licked my fingers, not wanting to miss even a tiny taste.  I started thinking about writing about eating that peach…and just as quickly I thought, “Who wants to read about you standing over the sink eating a peach?”  But that’s the thing, isn’t it?  I write because I have to write.  I love writing about what I’m doing, what I’m discovering, about the fact that I haven’t had a single Double Stuf Oreo in a month…and I don’t miss them.  Really!  Most of all, though, I feel like I’m ME when I write.  I honor my passions, my interests…the things I value when I take the time to write them down.

So, this morning, dear reader, I had the most delectable breakfast.  I sliced up a peach, poured a couple of tablespoons of organic cream into another bowl and frothed it up a bit with a fork, then…THEN, I drizzled that slightly thickened cream over the peach slices, the cream mingling with the peach juice.  I took a bite and the taste, the scent, the texture was unlike anything I’ve ever had.  I’ve always heard the phrase “peaches and cream” but never thought about actually eating it.  The velvety cream wrapped around those bright saffron slices of peach…it was spectacularly good.

This is a perfect example of how learning to eat real food has changed my life.  A month or so ago, I would’ve grabbed a Toaster Strudel or Pop-Tart, gulped it down with a huge glass of milk, barely tasting any of it.  Now?  Picking out peaches, taking them home, choosing one from my bowl, slicing it, preparing the cream…the whole process felt like a ritual, an homage to the amazing foods that are out there that I overlooked for so long.

Already, the thought of one of those “breakfast pastries” makes my stomach churn.  I can’t fully explain to you what a difference this new philosophy is making, not to mention that while I’m not counting calories, I’m willing to bet that this decadent breakfast would win out health-wise over any of that junk I used to put in my body.  To date, I’ve lost a little over 14 pounds eating cream and whole milk and rich cheese and real butter and fresh local produce.  I feel like I’m getting away with murder!

I hope you can enjoy some lazy summer mornings, delicious meals, and for the lucky few that can get them, some Chilton County peaches.

Burgers, Veggie Lasagna, and A Change of Appetite…

Last week I found a one pound package of grass fed beef on sale.  It was frozen, so I popped it in my deep freezer to save it for whatever idea might come up.  Since I was off work Monday for Memorial Day, I thought I’d fulfill my duty as an American and cook burgers.  I’ve been trying to use grass fed beef for recipes for several years now – not always successfully, but more often than not.

However…

In the past, to make the burgers extra yummy and flavorful, I’d pull out a packet of that staple of the Deep South cook – good old Lipton Onion Soup Mix.  One packet, a quarter cup of water, and 2 pounds of ground beef, and you’ve got yourself a tasty burger.



“Five Classic Recipes…Right on the Box” !

And then, inside the box: Onions, salt, corn starch, sugar, corn syrup solids, caramel color, hydrolyzed soy protein, partially hydrogenated soybean oil, yeast extract, monosodium glutamate, natural flavors, disodium inosinate and disodium guanylate.

Lots of winners there, including partially hydrogenated oil and MSG.

My mission was to concoct a “real food” equivalent to the soup mix.  I studied recipes and found that most of the “make your own mix” recipes included beef bouillon granules – try finding healthy “granules” of anything. I did find one recipe that was merely a mixture of spices, all of which I already owned except for one, so I bought some celery seed and went that route.  I used this version: Homemade Onion Soup Mix.  It looked really nice in the bowl – seeing exactly what I was going to be putting into our food made me feel good about what I’m doing.

Starting at 12 o’clock and working counterclockwise:

• parsley
• onion powder
• celery seed
• pepper
• garlic powder
• all surrounding the onion flakes

Isn’t that kind of pretty?  I thought so.  This recipe makes enough mix for 2 lbs. of beef.  Since I was only using 1 lb. I measured out half the spices – roughly 2 tablespoons.  I put the other 2 T. into a snack sized ziplock and will pull it out the next time we want burgers.

I quickly defrosted the beef (not in the microwave, but by putting the unopened package in a ziplock and running cold water over it and letting it sit in a bowl in the sink…change the water every 30 minutes and soon the meat will defrost evenly) and put it in a bowl.  I added my homemade spice mixture, one tablespoon of bread crumbs, and to add a little moisture, I put in about 1/3 c. beef stock.  I found this organic one on sale for $2.99 at Publix and will use the rest to cook some quinoa this week.  (Emeril’s brand.  I know.  I had to resist yelling “Bam!” every time I poured in stock.)


Oh, and I used a Sharpie to give myself a deadline for using the stock.   I need all the help I can get remembering things.

I mixed everything gently with a fork, just till it all came together, then cooked the burgers on my griddle pan.  I’ve been shying away from using my George Foreman grill lately – with all of the liquids/fats draining away, the meat sometimes ended up really dry.

The occasional pan-fried burger made from high quality beef isn’t going to hurt us, I figure.  I cooked them carefully, tilted the pan toward the end of cooking to let excess liquids drain, and those burgers turned out tender, juicy, and really flavorful.  We didn’t miss the Lipton soup mix, that’s for sure.  I’m sure these burgers would turn out great on the grill, if you enjoy cooking out.

Another dish that got a bit of a makeover recently – lasagna.  I’ve always done a pretty traditional meat/cheese/sauce/pasta combination.  I wanted to experiment with a meatless version.  I searched and looked at a lot of veggie lasagna recipes, and finally settled on this one: Vegetarian Lasagna.  If you click, you’ll see it has a “surprise” ingredient.  If you’re not a tofu fan (now stop…I’m not becoming a total hippie granola bar) then….keep reading.  The only time I’ve ever eaten tofu was in sweet and sour soup – thin little strips, no big deal.  The thought of a big block of the stuff in my lasagna, though?  I was less than enthused.  But I persevered.  I love roasted red peppers, so that ingredient won me over, and of course, those add a lot of flavor to this dish – and the tofu is crumbled and kneaded into the ricotta cheese mixture.  It gives it some thickness and some richness, and you’d never even know it was there.  I made up the whole amount but split it into two pans, one of which I popped into the freezer for a busy weeknight meal.  The lasagna was dense but not dry, and full of flavor.  Both Kerry and David enjoyed it and didn’t miss the meat at all.  Definitely worth a try if you like Italian food.

So, over the last couple of weeks, I have successfully added more vegetables to our meals, while simultaneously reducing the amount of red meat we’ve been eating.  We’re eating more fish as well.  I have found that, for the most part, meat doesn’t even sound that good to me.  Today we celebrated my dad’s 82nd birthday at Cracker Barrel, and I scoured the menu for whatever sounded good.  With my new way of eating, I planned to have a real “special occasion” meal if I wanted to – fried chicken or chicken ‘n dumplings or whatever I wanted…but I didn’t want any of those things.  I finally settled on a vegetable plate and took my time with the fresh corn, the okra, and the pinto beans.  The others at the table were eating dessert and I was still finishing my food.  I was so full I couldn’t even touch my cornbread or hashbrown casserole.  I find myself craving cool, light foods these days, more often than not.  Lunch has become a lighter meal – maybe a few good crackers, some creamy havarti or brie, and some fruit.  I recently bought some artichoke hearts, for pete’s sake.  What’s more, I even ATE AND ENJOYED THEM instead of leaving them in the pantry for years.  Who am I?!??!!!

Finally, while losing weight was not and is not my primary objective here, I couldn’t help noticing the difference in my face when I look in the mirror, and the loose-fitting clothing that used to be tight.  So, I stepped on the scale a few days ago.  From my highest point since pregnancy, I have lost twelve and a half pounds so far.

Not bad.  And I am eating the most delicious foods I’ve had in my life!  This is absolutely a joy and an adventure, and I’m so grateful to have such wonderful foods to choose from…  So, stay tuned, and enjoy your food!

Next time, I’ll be posting about my inaugural trip to our new Earth Fare store, as well as a really simple but delicious and elegant dessert I made recently.  A true Southern classic!

Blogger Tags: hamburgers, onion soup mix, vegetarian, lasagna, weight loss, living a full life

Tested

I’ve done a considerable amount of thinking over the last few days.  As much enjoyment and excitement as I feel about my quest to eat real foods…I don’t think I’ll change the name of this blog.

On that long-ago October night, when I was sleep deprived and up (again) with a 7 year old Stephen, when I thought maybe I’d start a blog, the Pink Floyd song that lends its name to this site drifted into my head with its perfect, delicate mix of despair and hope. I’ve always hoped to use these pages to share my honest and oftentimes gut wrenching feelings…to share my inside thoughts with an outside world.

In today’s cultural climate we’re inundated with images, sounds, advertisements, subliminal messages.  We communicate via computer or text message.  We are, as MIT professor Sherry Turkle's book states, Alone Together.  I’m almost as guilty as my teenage son of using these media to “connect” with other human beings.  A case in point: one of Kerry’s friends “texted” him to invite him to a movie.  Kerry is notoriously bad at checking his phone, so he missed out on the fun.  When I said, “I wonder why he didn’t just call our home number?” Kerry told me later that his friend “didn’t even think of that.”  We are alone, together!  The very words streaming from my fingers are destined to be published on the web…a desperate, even pitiable attempt to throw a lifeline out, to see if anyone is out there in a world that seems farther and farther away from my isolated little family unit.  This blog has always been about crying out, about seeking validation, even approval.  Every time I click “publish,” I wait anxiously to see if anyone notices, or better yet, comments.  For a minute or two, I feel…important.  Valued.  I matter.  What I say matters.

I do not mean to imply that over the years of this blog, the thoughts torn loose from a heart sore and heavy with pain are somehow untrue, or embellished in any way…or God forbid a raw bid for pity.  No, like any card-carrying introvert, I simply find it much easier to express myself “on paper.”  But, would I find it nearly excruciating to sit across from any of my readers and express these thoughts?  Undoubtedly I would.  Would I fidget and stammer over my words?  Would I say the same things I say here?  Am I wearing the inside out?  Why is it so hard to look each other in the eye?  I can’t blame it all on my Myers-Briggs personality type. Why do we hide behind the very devices that purport to encourage a sense of community?

For years I’ve been a member of an online bulletin board dedicated to the band Rush.  At first it didn’t really occur to me that it might be important to avoid building an internet persona – a character that I could customize to be whomever I wanted her to be.  Isn’t the internet the perfect playground for branching out, being a little different, creating the person you wish you were?  It can be, and for many people, that’s almost all that it is.  But when I found myself carefully crafting sentences, trying to be extra clever, or meticulously searching for just the right picture of me or my kids (!) to really drive home what a supercool person I was…it hit me.  To borrow from Turkle again: I was experiencing what is called “presentation anxiety” over how best to demonstrate to the internet the image I was unconsciously creating.  It’s like a mask we wear…and as long as we never meet or connect in the outside world, the illusion stays intact, and we pretend to ourselves that we’re involved in each other’s lives.  Does this encourage true community? 

Luckily, early in my years of making “internet friends,” I was able to meet some of them in person – and I knew I wanted to be the same person online or in the flesh.  My point is that the temptation is there, to make yourself seem different in some way…because it’s safe when you pretend to interact but in reality hold others at arm’s length.  I hope the very dear friends to whom I’m referring would agree that we are truly friends in every sense of the word, and I’m grateful for that.  This isn’t just about long-distance friends you’re not likely to see very often, though.  Ever seen someone you know in the store and gone out of your way NOT to run into them?  Be honest…

I must come clean about a few things, while I’m being so transparent – these confessions are part of my self-induced therapy.  I can no longer moan and groan to myself in my journal about the extra weight…and then eat so many Double-Stuf Oreos I lose count.  I can’t complain about feeling friendless when I grab my phone to text someone (keeping that safe buffer zone in place) instead of calling and hearing their voice.  I can’t whine about being miserable at work when I know in my heart I haven’t given it my all each day.  I can’t look myself in the eye in the mirror, pitying myself as a poor dear who has SO much on her shoulders, and then do nothing to take care of myself in the way that I deserve.

I’ve come to the conclusion that being honest on the internet is a true test of one’s integrity and sense of self, regardless of whether you ever come face to face with your target audience, be it friends at a Rush concert, or the neighbor down the street that you’ve “friended” on Facebook but never walk down the street to, you know…talk to…

As I continue to strive toward a better life, I want to commit to myself that I will also make it a more honest life.  I will tell the truth about what I’m feeling.  I will tell the truth about what I’m eating, about how I’m caring for myself.  I will not craft an image.  Like other writers before me, I long to have you, the reader, know me.  I want to tell you on these pages the thoughts that my voice could never fully express.  But on the happy occasion that I do see one of you face to face…I don’t want you to wonder what happened to that person who wrote all that stuff on the internet about autism and real food and finding meaning in the life you lead.

So this blog will continue to be my venting spot, my recipe book, my dream repository – with a renewed sense of truth running throughout, a thread stringing together the beads of my days and my years.
I’m wearing the inside out.

Blogspot Tags: autism, honesty, integrity, living a full life