happy being trevy

Trevy had an appointment with his Talk Doctor (aka psychologist) today. We're working on identifying feelings and strategies for managing them. We were trying to create a list of calm down choices to reference when he's feeling really stressed. Talk Doctor: So, Trevy, what sort of things do you think you could do to help you calm down? Crickets Me, helpfully: Would going for a walk help? Or maybe playing a game? What sorts of things might we do to help you trap your sad thoughts so you can feel calm again? Trevy: How 'bout you, Mom? What things could you do to not be angry? Like you were today.  

Trevor was having a particularly rough morning. He'd logged two seizures already and was hyper focusing on how to get money to buy new Wii games. It was making him miserable and I had him lay down on the couch until he was ready to move on to lessons. He usually helps me with laundry as part of his daily routine, but he was in no position to be helpful this morning. Toby was needing a mental break from his studies and offered to sit with his brother while I ran to the basement to finish the load I was working on.  When I came back upstairs I found Tobin holding Trevor in his arms telling him how much he loves him. It wasn't just words. Evident from his tone of voice and his body language was the passion flowing form him. As if he were trying to make sure Trevor never forgets his words. As if he were trying to sink those words down into his brother's marrow. It was incredibly, movingly sweet.  This has been a year of soul growth for Tobin. The borders ...

Lesson I've learned while walking beside and loving my child with catastrophic epilepsy... It's okay... even more than okay... it's crucial... to acknowledge his limitations.  There are so many things that Trevor can do. So many things we never thought he'd be able to. But... there are also many things he can't do. Crowds and noise, for example. I thought we might have to leave his sister's ballet recital the other day because he was *this* close to losing his marbles. Once the marbles are lost, there is no calming him. Thankfully, I'd packed his noise canceling headphones. It was really an after-thought because they're not usually enough. He's always surprising us, though, and somehow he pulled himself together and even managed a forced smile for me.  This is only one example, but the face is we are face-to-face with various limitations and challenges he faces, both physical and intellectual, ...

Trevor has felt nauseous since December. He's complained every.single.day of feeling "tired sick" or "throw up sick" or "tummy sick". His appetite has decreased dramatically and he's lost 10 lbs since his symptoms cropped up. We are working with his specialists (and adding new ones to the team) to try and get to the bottom of what's going on. In the meantime, this is the very reason why, at last year's physical, when he was at the top of the BMI scale, I was secretly thrilled on the inside. It was the first time in a long time that he physically looked healthy, regardless of what the charts say. I despise standardized anything, not excluding those silly healthy weight charts. I knew that anything could crop up medically to change his health and weight. It did. And here we are.  He is unable to swallow pills, so I crush his pills and sprinkle them in food. We've used everything under the sun, but applesauce has worked best for a...

  The past two years have been a doozy.   September 2012 Trevor had his first dizzy-spell-chased-by-a-single-vomit episode.  When you have a child with catastrophic epilepsy it’s easy to blame seizures for everything.  There’s this doctor saying that goes – when you hear hooves look for horses not zebras.  I have the zebra child so this doesn’t ring quite as true for me.  I know this.  So I try really hard not to fall into that trap.  Which is why the first time it happened I decided to convince myself it was a tummy bug.  When he had another episode a couple weeks later I took him to the pediatrician.   “It’s that time of year,” they said.   By December I knew something was desperately wrong.  He continued to have these intermittent weird episodes which involved loss of balance, speech slurring, eyes bulging and finally a single vomit followed by intense drowsiness.  Beyond the dizzy spells he was having uncountab...

    Good-ish news about the dizzy spells that Trevor has been having.     He had a doozy of one at school this week.  Around 9am his CNA noticed his legs shaking during circle time.  The kids were standing and he was clearly having trouble holding himself up.  She decided they needed to visit the nurse’s office.  During the walk there Trevor stumbled into the wall twice and told her the room was shaking.  This prompted her to carry him the rest of the way.  Once in the nurse’s office he fell asleep.  Usually after he rests he’s back to baseline.  Not this time.  This time he remained wobbly the rest of the school day.  He was still off balance when he came home too.  In a matter of five minutes he tripped while running twice and lost his balance a handful more times.     I stood there storming in my heart about what the heck to do.     Even though he was falling all over the place…h...

    I used to be good at spilling the guts of life.     Like, really good.  I could make random strangers cry in a single post.  And heart connect.  To the point that they wanted to just jump right through the computer screen to wrap our family up in giant cyber hugs.  Because that wasn’t possibly, they would send me lovely comforting emails instead.     I think I lost my mo-jo.     Somewhere along the last three years, I stopped sharing the guts.  And started withdrawing.  Curling up inside myself.  Wrapping around the sad and difficult moments like a secret that I was desperate not to let escape. Rather than spilling my guts, I found myself sucking it up and gutting through the rough patches.  Clinging to my husband, my Faith and the deep belief that Providence has pre-planned all of this mess.  That I am not alone.  And it’s not all pointless. As naïve and simpleton as that might soun...

      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 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’ve been putting this post off because I want it to be perfect.  I want to capture all my thoughts and feelings in a glass jar for you to experience with me.    But I just don’t think it’s possible.    I’m not a skilled enough writer.  But more so because some things are just too precious to be fully expressed.  So instead, I’ll just share little snippets of special moments and keep the rest marinating in my sappy soul.   The Variety Club hosts a special day for special families twice a year at a very special place which Trevy likes to call “Elmo’s World” but you might know as Sesame Place. We’ve been invited to attend in the past but for one reason or another it just never worked out.  Until this year. And the best part is…   some really amazing and beautiful friends were coming to join us!   Sophie and her mommy Emma and her mommy and Ryan and his mommy   Four IS kiddos and their families toge...

    you hunt around online and find some random specialist…     decide that specialist might be a good fit for your child’s special need…     so you call the random office and nutshell your child’s special story to some random receptionist…     who relays said special report to the specialist…     who CALLS random you back the SAME day and spends 20 minutes listening to your ( literally , sob) story and promises to look into more options and call you back tomorrow.      All free of charge!      Okay…so not all special doctors are quite so generous.  But my God…I am thankful for those who are.  And you know what…shame on those who aren’t.        And I can’t help but think you know you’re a special needs mommy when random specialists spend large chunks of time helping guide decisions about your special little one!     …danielle

I’m not sure how else to put it other than to just go ahead and say… I hated it! Hated.  It.  Just wait until I tell you what I’m talking about before taking my side.  Because chances are…you might not agree with me.  And I’m totally comfortable with that.  See, I’m on this new mission to be totally completely honest.  All of the time.  Including now.  Especially now.  When I’m discussing something that I abhorred from the tips of my chipping multi-color (compliments of Bristel) polished toes to my splits ends! And the worst part of it is… I was really looking forward to it too.  What a let down.  We’ve been dvd watching fools.  Ever since we learned that Netflix would be joining the Capitalists R Us Club.  You did hear that new this month Netflix will now be charging a fee for each service?  No more dvds and live streaming together.  Oh no.  Now you have to pay for th...