happy being trevy

Recently we started meeting with a Talk Doctor (aka psychologist) for Trevy. My heart nearly drowned in tears when she drew this chart and asked him to show her how much he worries about his seizures. The dot on the left represents how much I thought he worries. The dot on the right represents how much he actually worries. I had no idea. 💔 💜

Trevor has the sweetest, most insightful conversations while on the swing. I'm convinced all of his speech work should be done while swinging! When the sun is shining, he loves to head outside first thing in the morning. It's peaceful swinging and listening to the world wake. He craves feeling peaceful. We have a variety of songbirds in our neighborhood and their cheerful voices never fail to gladden our hearts.  This morning Trevor shared, his words far more adorable than my reinterpretation, that it's confusing to him how he's "a kid with words" but in the mornings he forgets them all until about 10 o'clock, at which time they return to him. He went on to express confusion about being able to remember some words, but not all. He shared that it's frustrating, though his grin and dismissive laugh revealed that he's handing his frustration really well. After pondering for a minute I thought to ask him if he knows the words he want...

With each passing day it becomes more clear that homeschooling is the right fit for Trevy. We're continuing to use and enjoy Before Five in a Row. This week he chose to "row" Blueberries for Sal. We read the story each day this week. Some days in his school room and some in his bed where he was resting because he felt "tired sick". It's hard to know if it's allergies, neurological, or even GI related. Just another layer of why homeschooling is right for him. We can snuggle in bed and read a lovely, living book together as part of his education program.  Speech To incorporate some oral motor muscle work we played a blueberry picking game with a straw and blue pom poms. I drew a "basket" on our chalkboard table and had him start by blowing the blueberries into the circle. When he mastered that I drew a second basket and had him suck and hold the blueberry to place it in the basket.  Life ...

The more we use Before Five in a Row , the more we love it! I am not an affiliate. There is no gain in sharing how we're using this program or how much we love it. The only perk I get is knowing that it might help another family making the decision to homeschool their special child. I have been homeschooling "lite" with Trevy for years and only recently brought him home full time. He's thriving and it's a beautiful thing to witness. I use the workbox system. One of the drawers is dedicated to our FIAR materials. I have the teacher's manual and a handful of books (some borrowed some bought) in the drawer. At the beginning of the week I let Trevy pick whichever book from the stack he'd like to focus on. This week he chose The Snowy Day. We read the book each day for a week and then complete enrichment activities to go along with it. Some of the activities are found in the teacher's manual but Pinterest and the FIAR forum are also...

  A week ago yesterday Trevor was wheeled into the OR for the first time since his hemispherectomy.   Talk about PTSD.    That’s whole ‘nother post.  Except to say that the nurse who patronizingly patted my shoulder and told me to “hold it together, mom” just about got an imprint of my wedding ring on her kisser. I was definitely slugging her in my head.   Trevor was NOT a fan of the whole idea. We’ve talked to him about his brain surgery because he’s seen pictures and we could tell he was curious. We have always been open with our children. Maybe we’re too open? Anyway…Trevor over heard that he was having surgery and needed comforting that it wasn’t on his brain again.  We assured him it wasn’t.   Still, he adamantly perseverated, “no surgery on my nipples !”  He meant tonsils.   Sometimes I *heart* Speech Delay-isms.   Dr. Neuro has mentioned a tonsil & adenoidectomy for years now.  She felt it could help w...

    Trevy is at camp this summer for a couple weeks. He attended this camp last year too. It's an inclusive camp so there are special kiddos and typical kiddos. Trevy attends with his aide and has a lot of fun.   One of the boys from last year remembers him and yesterday said,   Hey, Trevor, knock knock...   Trevy knows how to play this one and responded, Who's there?   The boy shouted, OH MY GOSH...HE'S TALKING!!!!   I've been giggling about that one since his camp aide shared it with me this morning!       … danielle

        Trevy never ceases to amaze me.  He is so smart and funny.  Hands down he has the best hip shakin’ you ever did see.  He has this amazing memory too!  It’s just been locked behind his speech delay.  But as his speech has blossomed so has his ability to share all those little thoughts that he has always had...but just hasn't been able to express.     Tonight for instance.     I kissed him goodnight on his forehead.  His eyes glowed bright.  And he stuttered and stumbled and took a minute or two and I could tell he was trying so very hard to spit it out and that it was really important to him.  I always encourage him to slow down and take his time.  It’s important to me that he know…deep in his bones…that I’m okay with waiting for him.  That I’ll wait as long as it takes when he has something to say.  He struggled.  And that’s exactly what it is.  It’s a gritty strug...

    Trevor loves…and when I say loves, I mean loves …the library.      So as a poopy on the potty prize we decided he could tag along on my weekly rendezvous.  It’s a homeschool mommy thing.      I may or may not be guilty of guilt tripping daddy into joining us.     What?!     I needed to do my homeschool mommy thing.  Browse the aisles.  Picking random interesting looking books.  Trying to look put together.  Like my kids are learning as much as all the other kids.  That kinda stuff.      Impossible to do with Trevy.     Trevy has a way of making look entirely NOT put together.  Because it’s hard to look put together when you’re sweating like a pig and frantically shoving books back on the shelves.  True story.     As much as Trevy loves the library…I think it’s fair to say he feels the exact opposite about the leaving part....

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

   

    Last Friday was our bi-annual schelp to Boston Children’s.     Dr. Neuro lives there.     And she’s kinda insistent we see her every now and then.     I’m such a big baby about it.  Seriously, though.  It’s a haul…and while I love Dr. Neuro and am thoroughly convinced she’s the right choice for us – it still stink stink stinks that we have to make that commute.  Even if it is only twice a year.      The thing I love most about Dr. Neuro (other than her involvement in helping us get Trevy’s surgery approved) is that she listens and trusts me.  If I tell her a little twitch is a seizure…she doesn’t second guess me.  And I’ve been second guessed by neuros before.  But she gives me the benefit (of having seen hundreds of thousands of seizures) of the doubt.      She did however look at me like I had two heads when I told her I’ve thought about just weaning him off of all ...

    My kids loooove movement cards and it’s a fun way to use word banks for different Seasons or Holidays too!   (click the image to download)   I whipped up these cute little movement cards tonight after Trevy’s school aide wished out loud for newbies (they’re still using Christmas movement cards).  Some things to keep in mind:     I have NO computer graphic programs or training.  This was done with good old fashioned Open Office, copy & paste and lots of Action Alert-able muttering. Even my “work” is interrupted so I couldn’t take the time to perfect positioning.  Most of the actions are self explanatory but when in doubt use your imagination.   Annnnd…all of the clip art came from free sites.  If I have accidentally borrowed your art please let me know so I can remove it.      Enjoy!     …danielle

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

    Sensory Bin We shout out to the month of looooove with all things red and pink.  In our bin, Trevy and Bristel will find magnetic (I already have gobs of these, I just had to sort out the red/pinks) and sticker (Target $1 bin) letters, music makers (pink harmonics in Target $1), whistle lips (Michaels) and little red or pink cars and other odds n’ ends we have around the house.    I don’t have any real focus with the sensory bin other than to expose Trevor to a variety of sensations.  He’s a sensory seeking guy.    Bristel loves our sensory bins the most, though.  She made super cute little necklaces out of yarn and the sticker letters for herself and a friend.  She is amazingly already…but playing in the sensory bin just gets her juices flowing even more!  Which can be dangerous for a not so crafty creative mommy!   T for Trevy Tray I’m still using our sand tray because it’s still a hit!  I found the most...