happy being trevy

      It’s that time of year again.     When invites to cook outs and beach days and pool parties start rolling in.  We know quite a few families (you know…for being home schoolers n’ all) in our community between youth sports and library programs and church.  It’s inevitable that we’ll get an invitation to a special something or other.     We rarely, if ever, go.     Not out of lack of desire.  Not because we secretly don’t like you .  Yes, I’m a mentalist on the side.  Wink.  We dread being asked.  And at the same time we love that we are.  It makes us feel special and liked and all warm n’ fuzzy inside.  And we’d totally love to say yes too.      But have you met Trevy ?      I hate to blame it on him.  And truth be told…we do have home body tendencies.  But there was a time when we actually said yes to cookouts and pool parties. ...

    Dr. Neuro was trying to hold off on increasing meds until after Trevy’s EEG at the end of the month.     I emailed her after the “ bathroom episode ” and she said if we saw anything else we’d increase Dilantin.      The Bathroom happened on Friday.  The following Sunday Trevor had a very nasty myocolonic jerk during worship.  It was one of the violent make him gasp and give you a goose egg if his forehead whacks yours full body crunches.  It was all of 2 or maybe 3 seconds of violence.  But immediately afterward he was calling my name.  Insecure and upset.  We have a “helper” on Sundays – I asked her if she would just take him home and baby him.  She’s been with us for several years now and loves Trevy.  And he loves her.  Otherwise I’d have taken him home myself. As it was I sat through the rest of the service thinking of nothing but getting home and holding him while emailing Dr. Neuro with ...

    I cannot take credit for the super cool picture schedules you’re about to be amazed by…     although I certainly inspired their creation during Trevy’s home based ABA intake.  The one where I might have confessed that I’m just this side of throwing in the potty training towel.  And mighta sorta griped about how difficult mornings have become.  Trevy used to love going to school.  Now it’s like fighting wild animals.  Yes, I meant the plural form there.  He just wants to stay home.  With mommy.  And his BFFs.  Toby and Bristel.  And he makes sure we know it!      And really, I can’t blame him.     But he needs to go to school ( for now ).  Miss. BCBA agreed.  And created these handy dandy visual schedules.          They both live on the wall in the bathroom.     The potty schedule is a solid laminated strip.  We use the ...

      your doggie rejects the denta-chew bones…     but your child doesn’t and happily gnaws away!     True story.     …danielle

    My life is too busy for tears.     There was a time when every little thing had me in a puddle.  I deeply believe this was healthy.  Even if others may have thought it was depression.  Maybe it was that too.  All I know is that grief is an intricate piece of the healing process.  When your life explodes.     And even though at times it feels like the sad phase will never pass.  It does.  And one day I catch myself thinking that it’s been awhile.  Since I was a puddle.  Sure there have been misty moments.  But the puddles have ceased and desisted without so much as a wave good bye.      A while turns into weeks.  Then months.  And so on.     I can feel the strength in my soul sometimes.  Sometimes it feels good.  To look over my shoulder and see what I can ( by Grace ) survive.  To look at today and know that I’m  not shattered and scatt...

    If you’ve read my blog for any length of time then you know how much I adore my iPad…         and how much I love finding free apps! Big fan of free apps, I am!       I have SO much fun sharing great finds with everyone I know too!     But to be honest, it’s a pain in the boot to post them on my blogs.   It’s much easier to post them to FaceBook.       Soooooo…     if you’d like to keep seeing my free app finds you’ll have to scootch over to my Raising Little Rhodies fan page and give me a “like”!     It’ll make me warm n’ fuzzy plus your FaceBook feed will be filled with freebies!     I also recommend subscribing to Digital Story Time’s daily digest.     Happy Saturday, everybody!     …danielle

    Play dough is all the rage these days!         in case you hadn’t noticed         I double dog dare ya to surf Pinterest and not stumble on a play dough pin!  But then, why would you want not to when play dough is the bestest?!         My (this is not a new idea and there are plenty of other similar ones out there but this was the first I’d seen) original inspiration for this project was Somewhat Simple’s Wacky Sacks .  It was one of those “holy what a great play dough idea, batman!” moments!  This project is SO easy that even the non-craftiest mommies out there (to which I am eternally bonded – we are sisters, kindred spirits, besties) can and should do it!         And just in time for Daddy’s Day too!           You’ll need…     Play dough .  I bought mine at the dollar store.  Next year maybe I’l...

Your Therapy Source (love them!) has a FREE clay feelings printable !  …danielle

    Kindergarten .     My stars…how did it fly by so quickly?     These past five years.     He’s FIVE!     When did he get so big?     My baby.  My sweet baby.  He has lived a lifetime already.  At times the days seem to creep by.  Drip drip dripping along.  Inch-stoning our way forward.  Then suddenly, I’m sitting in an IEP meeting and we’re planning for…     Kindergarten !     Nuts.     I don’t know about you…but I often hear negativity swirling around special ed services.  Therapists.  Teachers.  Aides.  Some of it very valid .  I carry a chip or two with specific names on my shoulders as well.  But the thing is…     each of these people have played a role in Trevy’s life these past two years.  Each of them has left a little mark in his life.  One or two has helped me grow into a better...

        Trevy running his little heart out at our Track & Field station…       And how much do you love Bristel running beside him?     Seriously.     You’re misty aren’t you?         Click to learn more about the Young Athletes branch of Special Olympics.     … danielle

    That CBS headline caught my attention this morning.     And how.     I started mentally tallying just how many scans Trevy has had in his five short years.     Jonathan’s reaction?     With a mad scientist laugh he rubbed Trevy’s head and said…     Ha Ha Ha!  We got them!  You only have half the risk !     I laughed.  We’re allowed to have morbid twisted humor.  It’s in the rules.     But still.  I’m not a fan of reports like that.  Even when they emphasize the risk is “low”.  You can’t tell the mom of the child of an exceedingly rare disorder that the risk is low.  Because she won’t find it comforting.     What I do find comforting though…     is knowing that Trevy’s Life was never theirs to predict anyway.     :: smile ::     …danielle

    A thunder storm was rolling in just as Trevy was waking from his nap.  He had this to say about it…     Mommy!     I responded with, mmmm hmmmm     He continued with,     Scary…ummmm ummmm     (he stutters ummmm ummmm often while his little brain tries to find the right words)     Thunder…ummmm ummmmm     BOOOOOOM!     I know I’m mommy n’ stuff.  But that was wicked cute!     …danielle

    One of Trevy's ABA lessons is names of family members. It's a little hilarious to hear his ABA therapist ask,   Trevor, what's your dad's name?   Followed by Trevy’s response of...   Oatmeal .   I could be wrong but I’m thinking daddy may have a new nickname?      …danielle

    The first Friday in June has been a favorite of our family’s since…     Well…     since we were first invited to Hasbro Children’s Hospital’s Dream Night at the (Roger Williams) Zoo.  Shortly after Trevy’s diagnosis.  Four years have gone by too fast!       You can read the history of Dream Night here .     For our family, it’s just such a beautiful treat.  An escape from the daily grind that is loving and caring for a child with catastrophic epilepsy.  While some stretches are less crisis filled than others…somehow it’s no less exhausting.     Or maybe I’m just a big baby?        Either way being invited to celebrate at the zoo with other families, exhausted (or big babies?) like us, is…     Well…     heart warming.     All three kids begged for face painting this year.  Evidently, Tobes has lived the past t...

      Ever the home educating supporter, Grams gave us a little strawberry plant to farm around this time a year ago.     Life was not kind to our little strawberry plant.  Not really being the farming type and all.      She was gnawed by the mutt dog.     Rarely remembered to be watered.     Never fertilized.     Tipped over by the hurricane.     Only to be sloppily slapped back into her container where she was then left out for the winter to freeze.  Her soil frozen all cockeyed in place.     She slept forgotten in the backyard.  Until the grass was long enough to mow.  Only remembered because her little home had to be moved out of the mower’s way.     I was somewhat impressed to find her alive and green, clearly refusing to give up, as I moved her to a different location.     And even more impressed when the next time she ...