happy being trevy

I wish I could say now that he’s older it’s easier. But then I’d be lying. Oh sure, he was all smiles when he got his “power ranger” wristband.  He was even smiley while we waited almost four hours for a room to open.  He smiled when he saw the nifty, new, touch interface tv in our EEG room too. But when the EEG girls arrived to get him wired up…everything went to pot.  By the way, these girls have been EEG-ing him since he was an itty bitty baby.  Miss. L was with us for that very first EEG.  When I fell to pieces after the neuro came and told us we needed to meet with him immediately.  I may not have known everything…being yet a special needs novice…but I knew enough to know that the chief of anything doesn’t make time for you unless it’s serious.  Miss. L tried to comfort me while my heart shattered in a millions little pieces around me.  I bet some fragments are still there.  Hiding in a corner, in that hole in the ...

    I’ve been up since 5:30.  Stress wakes me early and plots against my giving up one cuppa coffee a day plans.     I’ve been stewing at myself too.  I meant to create an EEG social story for Trevy.  Then I found one already created online and meant to read it with him.  I meant to use a doll and Wiki Stix to give him an interactive of what’s happening.  Because I doubt he remembers.  It’s been over a year ago since his last.  And I’m so mad at myself for letting the days slip by until here we are.     I’m also second guessing our decision to go in-patient rather than home with the EEG.  We’ve done the take home before though.  It was a horror.     He’s happily running around behind me blowing into Bristel’s recorder.  Which he’s forbidden to use when she’s here.     And I’m posting.  Wasting the last ten minutes before I take a big breath…to mark our voyage.  ...

    I'm trying to ignore that appointment in my day timer for next Monday.     The one for Trevy's 48 hour in-patient (boo) EEG.     Because it means we'll be imprisoned in a teensie weensie hospital room until our captors (I totally call them worse behind their backs) decide to release us.     Ugh.     I'm trying to ignore that it's less than a week away now but every time I open up my stinking planner – there it is.     Glaring at me.     I’ve been trying to distract myself.  Playdates and Pinterest only work for so long though.     I’ve been giving myself zero wiggle room for rescheduling.  Hence, his “peacock” this week.  I’m too much of a tight wad to pay for a haircut only to cancel the point of the haircut.     I’ve been telling myself that we’re lucky.  Count your blessings and stuff.  Lucky that Grams and PopPop can keep the big kids for ...

    “Ah, but we can’t do that – compare our pain.  It minimizes what happens to us, distorts it.  We need to say, yes, this is what happened to me, and this is what I’ll do with it.”   --- priest and Jewish sympathizer Adolf, while in hiding during WWII, Stones from the River

    With an EEG coming up way too soon…     it was time to get a summer do     so off to Stephanie over at Fantastic Sam’s we went     she’s SO patient with all his sensory wiggly ways     and when he looks up rather than down she just giggles with me     and when he asks for a peacock (read: mohawk)     she turns him into the most adorable peacock you ever did see!     …danielle

  Bristel : Mommy, when you get married do you spend all day and night kissing?   Me : Something like that, honey   Bristel : And then kids come along and ruin it?     **********   I was in the kitchen making "chicken nuggets"...     otherwise known as Trevy's crack     when he comes charging the kitchen gate shouting,     I homeworking! I homeworking!     I gotta admit I was afraid to see what exactly "I homeworking" could mean but I followed him anyway. He led me to the schoolroom  where a giant coloring book and crayons (which are supposed to be out of reach!) was open to a search and find and he's tracing (read: scribbling over) the letters!     I call that "homeworking" too!     **********   In order to find the humor, I need to set the stage a little. Bristel and a friend have started a "Care Club" the purpose of which is to do acts of kindness and teach li...

    Bristel has summer swim lessons 3 days a week at a cute little beach right around the corner.   (clearly this picture isn’t from the beach…but it still reflects her love of the water!)     She’s a fish and totally loves it.     Especially when it’s just the two of us girls.  Middle Child Syndrome.  Anything that involves alone time with mommy is a huge success.     But today Trevy (and an aide) joined us.     This is where I confess that I have a love-hate thing going on with “the help”.  I love that Trevy qualifies for special helper hours through the state.  I hate that sometimes it makes me feel dirty .  Mostly when the help is with us in public.  At home…it’s okay.  If they take him somewhere else…that’s okay too.  But together?  In public?  Where all of creation can watch me sunbath while someone else is sweating their booty off trying to keep him safe?...

    Trevy comes from his bath wrapped in a towel.   Pauses in the middle of the living room. Looks around. And with no warning throws the towel off and stands there in his "Roman Glory" with his fists in the air shouting...   Pow-ah Wange-ahs!   Trevy Speak for Power Rangers. :P     ***********   Trevy still has a crooked smile from his surgery. He probably always will. It's adorable and him. So he smiles at Toby who says to me...   His smile may be broken...   but his love for us isn't.   And his smile is one of the most special things about him.   Um. Yeah. I cried.     **********   I’d just washed Trevy’s hair and Toby offers to be his “hair stylist”.  In true big brother form he starts mussing up Trevy’s un-curls.   No no no no   Trevy protested   I PEACOCK!   We’re pretty sure he meant to say he wanted a MOHAWK since he was squeezing his hair down the middle of...

    I am NOT an expert.     I am NOT a therapist.     I am not even a “real” teacher per se.     I am just a mom .     Who happens to love sharing ways that I’m helping Trevy learn new things.  (if you’re curious about Trevy’s backstory click here )  I have a passion for encouraging moms (and dads) towards what I like to call “backyard therapy”.  You know, things we can do at home!  It makes me feel warm n’ fuzzy sharing and allows my heart to heal a little bit when another mommy tells me that she’s connecting with me.  So, you see, it’s purely selfish motives!     :: wink ::        Dressing himself has been a goal of mine for aaaaaages now.  Trevy is 5 and is still very mommy dependent with most things.  I need him to learn this life skill as much for himself as for me!  Because seriously…I hardly have time to dress my own self!    ...