happy being trevy

    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...

    So Trevy was eating a bowl of cheerios for breakfast. He lifted the spoon (trust me...not gracefully, as evidenced by the milk slosh-age!) and said, "Mickey Mouse!"     I took a peek and sure enough there were three little circles in the shape of everybody's fave mouse!     I said, "don't eat it! TREVOR…don't eat it!" as I ran to get the camera...because if this wasn't a Kodak moment, I don't know what is!     I came running back - camera poised for a quick snap.       And sure enough...Mickey had been happily chomped!     Oh well. It's still a cute story.     …danielle

another IEP meeting... to work together to figure out what Trevy's summer should and will look like. He's sporting his Detroit Tigers jersey... a hemi gift from friends. I'm sporting my purple necklace... cause I *heart* someone with epilepsy. It's our Hope rally gear of the day!

I found out who his ot is and he had pt today. Trevor is enjoying story time while eating his snack Sent from Miss. CNA's i-phone I just heart her!

I had to run errands yesterday. With the kiddos. And Grams. Buying in bulk just makes sense when you're feeding a family of five. So we were at BJs. With a cart full of cheese and green beans and the like. Toby and Grams were in a different lane checking out. While I had Bristel and Trevy perched in the double seated cart. I love the double seated carts! Keeps two of the kiddos contained while still allowing maximum cart fillage. Which means less trips to the store. Have I mentioned that I'm not a big fan of food shopping? The check out clerk was obviously lonely. And MUCH too talkative. Me? My life is pretty full these days...so making BFFs in the check out lane isn't really on my to-do list. I was totally kicking myself for not opting to use the self check out lane. ::smile:: Besides. There's the Trevor factor. If our contact remains in the 10 minutes or less visual observation only zone...the less likely questions are asked. Or curious body langua...

He's such a boy!

Trevy had a FABULOUS first day at school! All decked out in his birthday backpack & duds. He was SO ready for a day filled with fun, friends & learning! And his teachers had nothing but praises to share over him. I even heard he's already crushing on one of them! Which I'm okay with... so long as he still comes running to snuggle me like he did today at pick up! It was such a precious moment... that I changed my mind about the bus thing. I was going to have him ride both ways...since we're so close n' all. But seeing his face light up when he saw me waiting... Well... it made me a flake. And I called to change my mind! He'll take the bus in the am. Mommy'll be waiting for the running snuggles in the afternoon! I may catch some cyber judgment here...but I'll still chance admitting.... That I kinda enjoyed a handful of hours Trevy (the cutest menace) free. I didn't work out like I'd promised myself I would. But Toby & Bristel had a wonde...

Trevy will be attending an integrated half day school program. Four days a week. Integrated means approximately half of the class will be IEP kids. Half will be peer models. Not every IEP child will be as delayed or involved as Trevy. In fact...I took Trevy to sample the class this past Tuesday. We were there about 2 hours. So I was able to soak in quite a bit. And looking around the class...chatting with his peers...doing crafts and snack time beside them...I'm guessing that Trevy may have the furthest development to make up. That is just my guess. It is a co-taught class. Meaning there are two Special Educators. Plus one teacher's aide. To manage up to 15 children. Judging by all the name tags on the cubbies...it's a full class! Trevy will receive... PT once weekly for 30 minutes. OT once weekly for 30 minutes. And ST daily for 30 minutes. I have been looked in the eye and promised that as the Professionals spend time getting to know Trevy. If they discover he ...

It's not that he's strong willed, really... It's just that he's persistent! Summarizes me. Drenched in sweat and stressed out mommy. After having placed him promptly in time out at least a dozen times in a row. For the same thing. Whereupon once seated firmly on the cheeky pillow he proceeds to make the door stopper thingie ~ booooing ~ repeatedly. Without missing a beat then reaches for the the desk drawer pulls. Because they make a fun sound when they flap like that. And they're within arms reach. My time out rule is... butt on pillow . Hands...may move freely about the area. Which is probably how he ended up sockless. And lifting a leg. So that the foot was just so. Perfect for bringing the big toe into sucking position. Because evidently...that's how cheeky boys like to spend their time outs. Sucking their toes and making boing-y things boing. I think he could do this all day. Easy. Where'd I put those IEP papers? I'll sign them!!! ...

...is tomorrow! Think of me... Pray for me... If you're not comfy with praying...send me happy be strong vibes... I've promised myself that I will not sign anything tomorrow. Not because I disagree. Cause maybe I will. But simply because I need a couple days to let the information saturate first. But like I told another mommy today. It's easy to talk all brave. And advocate-ish. But sitting there. In the conference room. With all those expectant eyes staring. Well...it's just easy to lose steam. I'll let you know which way it went... ...once I'm on the other side!

R hode I sland P arent I nformation N etwork presents the following workshops *********** Date: 03/02/10 Title: Individualized Education Program (IEP): A Blueprint for Student Success (transition) Location: Cranston Presenter: D. Kriner Date: 03/04/10 Title: Transition from Early Intervention Location: Providence Presenter: V. Palmisano Date: 03/11/10 Title: Basic Rights in Special Education Location: Providence Presenter: K. Kuiper ********** Click here for a full listing of all the workshops offered by RIPIN. All workshops are free of charge to attend but registration is required two weeks in advance. To register or to schedule future workshops, contact Suzanne Tobin at 401.270.0101 x123 or Tobin@ripin.org. RIPIN reserves the right to cancel workshops due to low registrations. Ummm...and if you plan to attend any of these events make sure you email me! Cause that just may motivate me to find a sitter!

He's eligible. ::smile:: I him dressed cute (in mad sale Children's Place finds). And brought him with for the meeting. I feel deeply that it's important to see him. In real life...as Bristel would say. Because he's such a different kid in person than he is on paper. And he didn't disappoint! I couldn't have been more proud! I'm such a sap. My eyes misted more than once watching him motor around the room. Every day I'm more convinced that I'll never get over it. What he's lived through and survive- ing . He is a miracle. And sitting in the (toy storage?) room watching him play and flirt and ooze Trevy-ness...my heart was overwhelmed. He is my miracle. I was SO thankful to have everyone from Trevy's EI team there. In support. And because they love him! Each of these beautiful, amazing women have been Placed in our lives. Of that I am sure. And over the course of these past 2 1/2 years I have grown very connected with them. ...

Tomorrow is Trevor's eligibility meeting. I have a feeling he just might be. Eligible. ::smile::

I've been asking advice from friends I've made along this crazy journey. Friends whom I've grown to trust over time. I found an email this morning from one such friend . Her words (I'll be pasting and italicizing along the way) hit me upside the head. Which...ironically...happens to be the best way for truths to sink in. For me. ::smile:: I had emailed her asking for advice. And venting a bit. That it feels like the heaviest decision is my own. The neurologists (even those I adore) commit to nothing. There is no guidance on placement from them. Integrated vs. Inclusive. They will not say. When asked what Trevy's future will be. They squirm and sidestep with finesse. After your most uncommon surgical journey (one reason the surgeons won’t predict much) you are now on a very common and well-beaten path of EI to special education. Many will try to hold your hand – as I have. You will decide who you trust, instinctively or with the careful thought process you used for...

A seizure mommy friend (whom I consider kindred. And extraordinarily funny!) is also heading down Transition Lane. For some comic relief (is my stress-ness that obvious?) she forwarded me her (witty-licious) responses to the questionnaire she was given to help guide her daughter's placement. Any/all names have been changed (if you don't like them...blame Bristel!). ********* Ask her to point to nose, ears, hair, feet"... Does she point correctly to at least seven parts? NO Does your child make sentences that are three or four words long? NO When you ask "what is your name" does your child say both first and last name? NO Does your child kick a ball by swinging his leg forward? NO SHE IS TOO BUSY TRYING TO EAT IT Does your child jump with both feet leaving the floor? NO Does your child stand on one foot for a second without holding on to anything? NO SHE STANDS ON MY FOOT FOR A SECOND WHILE DECIDING WHAT TO BITE Draw a line from top to bottom. Ask your chi...

I thought it went okay. Then again I woke WAY to early. And couldn't toss n' turn back to sleep. Because all this mess was preventing me. So maybe I'm wrong? I was asked if I'm ready for this? Trevy going off to school. I was getting there. Until full days were mentioned. Seems the kids with more intensive therapy needs get the full-day treatment plan. I am not ready for full days. Aside from all the other reasons...my home-school mommy guilt would eat me alive. I've wrestled that one now for months. How can I home educate the big kids. And not the baby. The reality is...I enjoy the priveledge of homeschooling Toby and Bristel because I can. I have the ability. And energy. And in a way...it helps me deal with the guilt associated with how much I have to invest in Trevy's care. I suppose in a way I hope it fills that hole in their little hearts. And that someday. When they're all grown up. With munchkins of their own (because it's n...

It's so wild. To wake up on the right side of the bed! For a change. I'm talking Toby. Silly! I've been in a funk so long now I think it's here for the winter. But Toby...he slept in late. Which seems to agree with him. As he's been quite charming and eager to help so far today. It's also wild how warm freezing can feel. After a week of ungodly below zero degrees! And snow. Way too much snow. Callie obediently pooped in the white. Again. That makes at least 4 since yesterday! Although sadly...it would seem we're now trading poos outside for pees in. But I'm still claiming victory. And as I stood outside. Coat unzipped. Cause frostbite is now hours away rather than minutes. Squinting in the sunny snow glare. Cheering wildly on the inside as the puppy squatted. Listening to the birdies (who have yet to find our Christmas bird feeder! Which makes sense. The smart ones already migrated to Disney, right?) chirping like Spring is in the a...

Monday. It begins. The preparation for Trevy to transition. It's our first official meet n' greet. The time has come to move on. Get the boot. Out of Early Intervention. Into the school system. Because...it would seem...three years have whizzed by. And on April 3rd...my baby boy will no longer be classified (officially. Unofficially, he's my last. Thus making it a very real possibility that he'll always be my baby!) as a toddler. He'll be a pre-schooler. Yikes. And for whatever reason...it's all very stressful for me. Although... (shared in a hushed furtive tone) ...a piece of me is looking forward to moving past this crazy therapy juggling chaos...into what I hope to be a more manageable routine. Which includes a couple hours daily of "me time"! Maybe I'll finally lose this baby weight?! Cause seriously. Finding all those old skinny pics of me in the basement (why...oh why...did I choose to fight my cabin fever by sifting the junk ...