happy being trevy

    “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...

      After remembering that I forgot to and then calling to go ahead and…     schedule Trevy’s neuro appointment, I proceeded to whip off an email to The Hubs:     Hey Babe, Harini appointment schecduled.  Would love for you to join us.  Maybe we could head up early and grab lunch at IKEA?     **********     Yep, we get our quality time in during the hour (if we’re lucky…two or more if we’re not) commute back and forth from Children’s.     Because when he navigates downtown Boston for me I fall in love with him just a little bit more!     …danielle

    Trevor is in Kindergarten.      His class uses a program called Kid Writing .  The idea is that he thinks up a sentence on his own and writes about it.  The theory being children are to write phonetically – using only the letters and sounds they know.  Clearly, we have to modify this for Trevor.  Because it takes Trevor at least twice as much time and energy to learn as typically developing children… I insisted that his Kid Writing be errorless .  I still wanted him to think up his sentence – he’s very creative.  But I DID NOT want him to learn incorrect spelling.  Can you imagine how much time that would take to re-teach!!!  So Trevor’s Kid Writing works a little differently.  Different is more fun, you know!  He thinks up his sentence.  His teacher then writes his sentence for him.  Which allows him to trace over her words and write his sentence errorless-ly!     So this weekend ...

    I have an IS daddy friend from Nebraska who likes to tease all the East Coasties in his life.      This week was about us griping over the cold weather!             I couldn’t resist snapping a few pictures of my (crazy!) kid.  Shooting hoops in short sleeves, shorts and BARE feet!      You’d never know it’s almost cold enough to snow today!     And thankfully, Trevy would rather snuggle in his jammies all day when it’s cold outside!  In fact, this morning when he let the doggie out (one of his chores) he said, “Too cooooold!”     Indeed.     …danielle

      One of the beautiful things about being a special needs parent (because there are beautiful things on this journey) is the relationships I’ve made with other parents.  There is a special heart connection that flows beyond physical presence.  Most of my closest friends don’t live next door.  They don’t go to church with me.  We don’t sit shoulder to shoulder on the bleachers.  We’re connected by something deeper than our kids being in the same grade.  Some friends I’ve had the extraordinary blessing of seeing in person!  And for the doubters of virtual friendships…I’m happy to say…in person only deepened our friendship!     One friend ( Living & Homeschooling with a new Normal ) I’ve made this last year blessed me with a special bloggy award!      Which I’m passing on to…     Who’s Learning? Who’s Teaching? – I looooove this blog written by a mom who shares her homeschooling and...

  "No, I’m not over “it” and here’s why; “IT” is not over! My days revolve around “it”." -- Ain’t No Roller Coaster     About two months after Trevor's surgery we had someone sit in our living room and tell us that she and others felt we were failing them. That we weren't investing/doing enough for a particular project.  That we were in a leadership role and were failing miserably.  She shared how they were growing bitter with us because of our inability to effectively lead.  When we brought up the fact that our son had just had almost the entire left side of his brain removed, and this after he’d already lived over two years with hundreds of daily seizures…     Her response was, "but he's better now! I mean, it's been over two months!"     Quite frankly, it's a miracle I didn't cause her bodily harm that night. I was beyond hurt. Beyond angry. Those kind of words have a way of sticking around.  Messing with your mind....

    Trevy perseverates .      Which is just a fancy way of  saying he often does or says the same thing over and over and over and over and over and over and…you get the idea.     It’s a symptom of having a Traumatic Brain Injury .  And it’s something that he really can’t help.  His little mind gets stuck.  Like a scratched record.     This is why we try like crazy NOT to mention what may be happening tomorrow…or God forbid…in a couple weeks!     Even though I know he can’t entirely help asking the same question all the live long day.  I still go a little bonkers answering that same &$%# question over and over again!  Proof that I’m only human!      Most of his questions involve what he’s doing.  Or going to be doing.      Every morning he wakes up and asks, “Family Day today?”     Family Day to Trevy means NO school.  No work....

    I’m a sappy head.     Which is why I established a family tradition of praying in the New Year on the beach when we were just newly weds.  We’ve always lived (or been) close to the shore on New Years.  Delaware.  Rhode Island.  Tanzania.  And it just makes my sappy heart feel all warm and fuzzy to stand before the powerful vastness of the ocean and dedicate our lives anew to the One who created it all!      Also, it’s fun the heckle the crazies who brave hypothermia every New Year!!!  There were three of them on our little rinky dink beach this year.     Jonathan says, “Hey, who wants to take a dip with those crazy people?!”      The two big kids immediately shout “NO WAY!”      Trevy (true to form) shouts, “MEEEEE!”     Now for a little back story.     It also happens that there is snow on the ground this year.  And for the first t...