happy being trevy

It's Easter Sunday.  I've prepared a fun Easter trivia game for church. Like every Sunday, we arrive early to get things ready for our together worship. We have a few minutes to play memory while waiting for our church family to arrive. Trevor has a seizure. One minute he's playing Memory. Happy. Engaged. Triumphantly winning. The next minute he's staring into space while his lips smack together rhythmically.  20 seconds pass like this, then he's back. But not quite. There is always a fog after a seizure and he's acting foggy.  I ask him if he feels okay. I always ask. Even though he always says the same thing. I suppose I'm hoping that one day he'll be able to tell me. To help me understand the storm inside him. Like always he says, "I don't know." but wants to keep playing memory again. So we do.   A couple minutes pass before he starts crying that he feels sick. He's going to throw...

 So, confession. We don't do anything like a boss around here. We're not that cool. Also, I don’t typically write advice posts.  I suppose that’s because I consider myself more learner - less teacher.  Or maybe it’s just that know-it-all types drive me wonky?  At any rate, after surviving yet another inpatient EEG my hubby and I thought it’d be akin to sin not to share some things we’ve learned over the past eight years.  This is in no way an exhaustive list.  Nor do I claim to be an expert.  It’s just my list.  My credentials being that I happen to love a little guy living with severe epilepsy.  Believe me when I say, we've been around the inpatient EEG block. Be Prepared to Wait Unless you’re one of those people who should totally play the lotto because things just always fall your way…you can expect to wait.  On the front and back ends of your hospital admission.  We have had the joy of visiting fou...

    4 years ago today ...we'd already hugged and kissed him goodbye by now. I'd run my fingers through his curls one last time. God, I miss those curls. And kissed every inch of his sweet face. Inside my heart was screaming "NOOOOOOO!". There was an intense soul battle raging. One part of me desperate to snatch him off that stupid gurney and run away to the furthest reaches on the earth. The other part knowing we were here to rescue him. Knowing we HAD to be here. My love for him was the gravity force that held me down that day.     4 years ago today ...we survived the longest, the most emotionally draining 13 hours of our lives. No day before could compare and no day since has yet to. We spent that day in a waiting room at Detroit Childrens. Feeling so very alone. So far from home. We wanted to wrap our arms around Toby and Bristel but were thankful we had left them behind. Because this was too much for us. It would certainly be too much for them. We watched part...

A friend recently asked me to share Trevor's story (thus far) in a video. She's a professor of psychology and thought it could have an impact on her class. I did the best I could with the tools at my disposal. For once, I was kicking myself for not getting that MAC.  I was even tempted to use iMovie on my iPod rather than messing with Windows Video Maker.  Somehow it came together. I confess that it was harder than I thought going back in time like that. Difficult…but also healing.  It’s easy to get caught up in the sadness of the now and overlook the joy of how far you’ve come. If someone had asked me to write the wildest script I could imagine for our family six and half years ago...it would not have come close to the path that has unfolded. Even though this journey with Trevy is very heavy and extraordinarily exhausting, we are SO thankful for where he is today. How far he's come. For the people who have come beside us to advocate for him and support and believe...

    “I am a parent advocate. I have been my son’s advocate for the past twenty-two years, and an educational advocate assisting other parents for almost a decade. I know what it is to sit in an IEP team meeting as both the intimidated parent and as the educational advocate supporting other parents. I have seen parents overwhelmed in a meeting laden with the special education acronyms, rules, regulations, and negotiations that lead to the development of their child’s IEP. In my several decades of on-the-job-training, or “combat duty,” I have come to believe that reading an IEP is nothing short of having to learn and master a foreign language .  But it can, and must be done.”  -- Marcie Lipsitt, NCLD Parent Leader, excerpt from Why and How to Read Your Child’s IEP .     I have often wondered why God would allow us to go through the whole sha-bang of becoming career missionaries only to bring us home.  It’s not something you just “do”, ya know.  W...

re-posted from my guest appearance over at Team Aidan I should establish up front that I have tendency to take the scenic route.  If you’re interested in gutting it out with me you might want to pause here so you can grab a cuppa joe.  A box of Kleenex wouldn’t hurt either. :: wink ::   Also, one quick thing before we take the plunge.  Though I’ll keep slipping into the first person “I did this” or “I did that” – the truth is – I’m not on this journey alone. My mom is not able to contribute as much recently due to health issues, but during the most dire times she was available at the drop of hat to help me.  In fact, Toby and Bristel lived with my parents while we spent almost a month in Detroit. I’m also connected with other IS families who are my virtual safety net and sounding board. We have support from our local community too – friends gave hotel points, air miles, money, many a ride to & from various sports for the big kids wh...

I t his speech development chart by Wee Talk Speech & Language Services of Reading, PA . It’s simple format is perfect for me!  Too much info just makes my brain turn to mush.  Which is why as often as possible I avoid shopping at ginormous stores.  But this…this amazing chart…is just super!  LOVE it! In case you’re curious…Trevy is solidly in the 2 to 3 years bracket (he’ll be 5 in April!) .  And maybe…just maybe…beginning to emerge into the 3 to 4 years box.  Depending on the day.  …danielle

  I had to advocate hard (read: get an attorney involved) for Trevor to receive ABA therapy through school.  In our state, ABA therapy is primarily a Medicaid approved home-based program.  Which is great.  If you have Medicaid.  And also, if your child’s primary needs are self care or behavioral.  Which Trevor has as well because by God I want the boy to dress himself eventually!    However, I passionately believe that the ABA model is what he needs to receive and retain academics.  Almost more important (to me) than dressing himself.     With the help of RI Disability Law Center, the school agreed.     Trevor has been receiving 8 hours of ABA instruction as part of his Individualized Education Plan for a little over a year now.  He goes to school about an hour and a half before his friends.  And the remaining half an hour is in class to help with generalization (layman’s terms:  being able to use the...

  I caught Trevy rockin’ out with one of his fave Christmas gifts.  Please pardon my messy Therapy/School Room.  That’s what happens when it gets used.      :: smile ::        I love how he pats his chest when he sings “me”.   Also, how he turns his head away so he can keep chomping on the microphone.  Cheeky.  But smarty too.   I do think it’s super cool that Allison Cruz thinks he’s cute.  She doesn’t just have a smashing voice…but super good taste too.      …danielle

Our iPad is by far the best therapeutic (and everything in between) gift we ever purchased for Trevy!  And I love to share great apps as I stumbled on them.  I even have a tab way up at the top of my page where I've listed them.  But it needed some sprucing up.  I'm still working on it but in the meantime.  Here ya go!  Enjoy! Mommy's Tools Time Timer Seizure Tracker Moms with Apps Free App Tracker Digital Storytime - email subscription Trevy's Top Ten Youtube Netflix Pandora PBS kids Anything Sesame Street Talking Friends - all of them! Jumpstart Preschool Sonoflex (but we got it during the .99cent sale) My Underwear ABCs  Magnetic ABC AlphaBELCH My First Puzzles Alphabet Jumpstart ABC Book Elmo Loves ABCs RedFish Alphabet Andrew  123s RedFish Balloon iTouchiLearn Numbers Dots 4 Tots Infant Arcade Numbers Big Red Barn ABA Anything Kindergarten.com Adam's Game Model Me...