So... they say it takes a Village.

More like a whole county!

Every parent knows what it takes to get by day to day with a 5-year-old boy.    It’s high energy, loud and always interesting for sure...   They’re dirty, they’re strong enough to break lots of stuff and smart enough to get into plenty of trouble, right?     Well, add ASD into the mix and it’s like turning the volume up to 11!   Thankfully, we have some great people around us to help with all this fun!


Thought I’d try to take you through a little piece of the undertaking that is team G.    We will be the first to tell you that since the day we received the diagnosis of Gavin being autistic our team has been nothing short of incredible.    We’ve had a couple of bumps or members that just didn’t click with G but it was not anything to get too twisted about.   Well, there is one situation where the “Varecka” came out of dad but I’ll tell that story another day or anytime you’d like to join me for a bourbon.  So in short, we’re a very lucky bunch!


Ok, so below is the roster of positions on Gavin’s team right now and some quick descriptions.   These are the people who are with him to teach, ensure his safety, provide some good stuff and just love on him.     

  • Mom and Dad – Yup, I’ll put us here because, well we kinda started this whole thing.

  • Gavin’s Sisters (4) – They all fill various roles but most important is that they have been at his side from day one and always will be the best teammates he can have.  They truly care about everything G is involved in.    

  • Gavin’s respite provider – Our 5th daughter and an honorary member of the clan.    She loves his boy as if he was her own.    We’ve had a few people fill this role and not until she did we have the right one!     Lucked out here, too!

  • School – Gavin’s team at Hilton Village Elementary and the district are above amazing.   The administration for the special needs program is top-notch and I’ve never felt we didn’t get exactly what Gavin needs.  We’d heard horror stories and ours sure isn’t one.    We are so lucky to live here.

    • Gavin’s Special Ed Teacher – Ring leader at school and someone we trust to always shoot straight with us about his progression and keep us on point of her expectations for the US.   Communication is so important and they rock it!     I have to also say, Gavin’s experience with the BOCES Pre-K was outstanding too.     Leaving there was hard for all of us and they truly love G.    Making it all happen during COVID was impressive.  

    • Other teachers at school for G.     Physical Therapy, Occupational Therapy, PE, Music, and Speech.    He has individual and group activities during the week with all these teams.   Here again, their ability to communicate to us exactly what’s going on is priceless.

  • Applied behavioral analysis (ABA) – This is a behavioral therapy in our home.    There is controversy around ABA as some feel it does nothing but teach habits or try to force those with ASD to comply with “commonly accepted” behavior.    We’ve not experienced this at all and Gavin has done very well with the day-to-day skills they help with.   He is engaged and our experiences have, for the most part, been awesome.     One experience with a potential provider company was horrible, but, we dealt with that quickly and we love the team he’s on now.    Gavin has these services up to 5 days a week!     He has 2 providers as well as a supervising provider too.     All bring something different but all come together for his plan.    The truly amazing thing for us is that they are now pushing into school!    This is big, very very big.    To have the providers that work at home with him allowed to be in the classroom isn’t a regular occurrence.    Our school and ABA team worked hard to make it happen and everyone is on board and we’re already seeing returns we may never have before.

    By having ABA push into school we, as a team, have a better chance to ensure his lessons support one another at every session.   Using common terms and methods makes it so much easier to ensure consistency which is a big deal to our kiddos.    As a matter of fact, we’re working on a meeting now for just that very thing.    We feel we may be able to push G harder at home than we are.    We have a feeling his ability is beyond some of the stuff we do here and we want to be sure we continue to challenge him.   

    ABA is a self-pay thing and I’m so thankful for my employer and the very strong benefits they provide for our family.    Without that, we’d have to make some hard choices.

  • Medicaid services – We all look at our deductions on a paycheck and you can’t help feeling upset at the money taken out of our checks.    Well, I can tell you my feelings on this have changed, even on my property taxes.    Being reliant on some government programs now makes me thankful for where we are.    While there is plenty in NY I’m not fond of, I can say it’s the best place to be for Gavin right now.   

    • Self Direction – GAME CHANGER!     Yep, I said that.    This program allows us a lot of help when it comes to G and some direct costs for things to improve his life.    While it’s a huge list of services available some of the biggest for us is Respite, Memberships for places like the Strong Museum and the Zoo, assistance that allows us to take Gavin’s respite provider along on our vacations.    Gavin also gets some help with classes like his current swim lessons!  We’re even offered the opportunity to purchase equipment for our home to help his development and get assistance in the costs.    We were so amazed by this that G’s momma has made a career out of being a Broker for this program.    Now she helps other families just like ours too!

    • So for people under this program, Gavin has his Broker and a Fiscal Intermediary to keep an eye on the money….   

  • State Services – His Care Coordinator helps us with everything we do with the  New York State’s Office for People With Developmental Disabilities.   This is a huge bag of stuff but, she’s kind of like the QB for Gavin’s overall program.    She’s even helping us with some modifications at our home to ensure Gavin’s safety.     In the past, they helped us get a fence for our back yard too.    Gavin is an elopement risk and keeping him home is obviously important.    This allowed us a little extra help in ensuring his safety.

  • The Assistive Technology Team at Monroe BOCES 2 – WOW!     We say Gavin’s voice but this team is truly responsible for his voice.   Starting with the study to
    see if Gavin was a candidate for an augmentative and alternative communication (AAC) device through the process with insurance approval, delivery, deployment and repair they have been outstanding.  For those of you who don’t know much about them that is what Gavin is using at the beginning of this post!


So, as you can see it’s a pretty big village for G.   We can’t thank these amazing people enough.    I’m sure I missed a couple along the way and if so, I’m sorry!   In our effort to share our world I thought it would be interesting to see what a machine it is for families like ours.  These are not easy jobs or easy money for the providers.     They do it out of love and concern for everyone they work with.    What’s really cool is that even as Gavin moves on, as he gets older we can call all of our past providers when we need a little help.   We were struggling with some behaviors during COVID and reached out to one of our very favorite providers from the earliest days of Gavin’s early intervention program.    She offered to come by the house just to see what’s up in G’s world and point us back down the path.    Can’t put a price on that!


For our family members, it amazes me the love and willingness to help they all show us.    Always ready to help and listen when the days are hard.    It makes things so much better.   As a side note, Gavin’s sister Julia has decided to study Occupational Therapy when she heads to college in the fall.    Inspired by the people who have helped her baby brother, she wants to do the same for others.    She may have the biggest heart I’ve ever seen…


Thanks for coming along for a small part of the ride and stay tuned!


Love,

David

 
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Sometimes you get exactly what you deserve!

Gavin has been surrounded by teachers at home as well as at multiple learning facilities since he was diagnosed with ASD at the age of 2. We can honestly say that we’ve been beyond lucky that all our experiences, with the facilities we’ve chosen, have been positive and the worst I can say is that there were just a couple times that G didn’t “click” with someone. That’s not always the case and we know G has a couple guardian angels looking over him when it comes to all this. But there have been a few that just stand out above it all. The connect, they understand and reach G and get so much out of him. This is a story of one of the very best!!!


COVID changed our world, right? Truly changed forever. Everyday life from home and school to how business functions and then the horrible divides in our world over how we deal with this disease and what were the right moves as it progressed. It was just too much for us all. Keeping our home in order would be a handful no matter what but, adding COVID on top of ASD and well, that’s just a recipe for trouble. Now, can you imagine trying to make it work for about a half dozen special needs kids? CRAZY! That’s where this begins.


Gavin began the year at a brand-new school in a K-1 classroom. He did very well even with the restrictions and quickly settled into his new surroundings. Everything was very good for him and for us as his caregivers, we were comfortable and knew we were on to something great. It wasn’t perfect but, the course corrections made a ton of difference! The year progressed very well with Gavin showing excellent progress and growth in his new home. Early in May we received an email from an administrator at his school, Village Elementary in Hilton NY. The note would inform us that G’s teacher, Katie Caprino, was nominated for Teacher of the year! In our district as with most, this is a very big deal. Mrs Caprino was not aware she was nominated until today, the day before school begins at a kickoff gathering for the district. As part of the nomination, we were asked if we’d consider writing a letter about Gavin’s year with her. Of course, we’d love to do so! Also asked were school staff members and I believe other parents too.


So, I began with brainstorming about the year that was nearly finished, the relationship we all had with Mrs Caprino and thinking about specific examples I could provide the administration that oversaw choosing the winner. When you sit down and force yourself to take inventory about most anything you’d be amazed with what you find. As special needs parents we’re always ready for the next challenge in our path but to put this together it became evident that any challenge we had regarding G and school were addressed by Mrs Caprino and her team as if Gavin was their own flesh and blood. I could write it all again, but thought I’d share exactly what was sent to the district for their review. Hopefully Mrs Caprino is ok with that as we really want the world to read how we feel sending G on that bus every morning.






May 10, 2022


Hilton Central Schools

Teacher of the Year Committee


Dear Esteemed Members:


We truly appreciate you taking the time to review our letter of support and heartfelt nomination for a very special member of the Hilton Community. With no hesitation or second thought we would ask you to consider Mrs. Katie Carpino as the 2022 Teacher of the Year! We know that while there are many amazing team members to consider that you need look no further than Katie and the team she has assembled.


Our son Gavin is in his first year with Katie at Village Elementary. He was diagnosed as autistic at 2 years old and is a non-verbal member of Katie’s classroom. Obviously, any change for Gavin is difficult and probably even harder on us but this year has been nothing less than amazing for his first year in the school! When you consider COVID, staffing and all the usual challenges that she endures as a special education teacher you’d give her a pass if things were off, I’m sure. But Katie and the whole staff truly are world class and the impact they have on our boy is hard to articulate. It’s easy to start out a year excited and driven and easy to taper off as the year goes on but Katie has kept her foot on the gas pedal all year long! I’d love to give you some examples of how Katie has made a difference for Gavin this entire year for your consumption and consideration.


A trigger word in our modern world is communication, I think we can all agree on this. We hear it daily from our elected officials to parents to employers and even from our family members as to how critical effective communication is. Well, from day 1 Katie has ensured we always know what’s up with Gavin and everything that touches him from the time his feet hit the bus at 7:45am until 3:30pm when they come back down on our driveway. She’s made it her business and purpose to ensure his day is positive on every move. Her use of his diary never misses a day or a detail. Her use of the Remind app for all parents, ensuring we feel part of a community wasn’t lost and was never forgotten. We all look forward to getting our weekly recap and photos of all the kids in Gavin’s class. When we asked if a couple members of Gavin’s circle could be included, Katie made sure it happened and has welcomed them with open arms! When we’ve asked her to interact with Gavin’s doctors and his team of home instructors it’s done without hesitation or question. These critical moments aren’t lost, and I believe that as part of Gavin’s team, she’s helped us make amazing strides this year by communicating with anyone we as his parents feel important.


The ball is always bouncing in Gavin’s life and sometimes we must be very creative to get it to stop for a few moments and get some focus. Well, Katie has been very creative on many levels. Starting with the bus…. Gavin really struggled on the bus at times this year. With her involvement, input, and assistance we’ve found ways to help him enjoy his ride while being safe and happy. Katie without asking, assembled materials including books, toys, and other items to help make his ride as perfect as possible. When Gavin who is an elopement risk was getting lose on the bus, she was right there with suggestions and phone calls between all parties making sure he was safe and able to continue to ride with his friends. Gavin has at home services in the form of Advanced Behavioral Assessment (ABA) teachers. These lessons are geared to help Gavin with numerous life skills from eating and toilet training to being more aware in public. When the discussion came up about how we can work together with Gavin’s classroom team Katie encouraged the collaboration and in the end was more than willing to allow Gavin’s ABA instructors to push into the classroom during some down time in his day! This, this is something few have heard of, and she made this rare opportunity happen! I can’t tell you how amazing it is to have this unheard-of collaboration and level of creativity on Gavin’s team!


Dedication for Katie isn’t to her job, I’m sorry to say. Katie is dedicated to her families, ALL of us. We know all teachers are dedicated to their craft and the kiddos, so please, don’t misunderstand what we’re saying but, she is always there for us. Even when she doesn’t need to be. Little victories are big and sometimes too long between for Gavin and many of his classmates. It’s a hard truth we’ve come to deal with but, every day we get up and we believe. We believe it’s the day to move a mountain. Well, when that mountain moves a bit, we want to shout it from the rooftops. Katie as mentioned before always keeps lines of communication open and we do from time to time send her great news or a story that “Katie will love to hear” …. We know it’s selfish of us, especially on a Sunday or 9:00 at night, but Katie is always on that chain of announcements for the recent guess what Gavin just did story. In return, Katie always, and we mean every single time responds with love and genuine care for being included in Gavin’s world no matter where in the world she is at that moment. No one can ask for this, you as administrators can’t expect it, you can’t teach it and as parents, we could never put a value high enough on it. Her dedication, actually, her genuine love for our kiddos is nothing less than breath taking. We can assure you of this fact without any doubt!


We can go on and on about the difference Katie makes in the lives of these special children. I’m sure the other families have even more creative and one-of-a-kind solutions to help their kids make the most of their time at Village Elementary but I’m not really sure you need even more of our bragging about Katie. She is truly a treasure for everyone involved.


We would like to again thank all of you for this wonderful program. How you’ll ever choose one candidate for this high honor, we really don’t know. But, when you think about this we hope you’ll put Gavin in your mind and more importantly, your heart. A child that can’t yet speak like most kiddos but has this wonderful team of people that bring out his voice through their guidance and love on a daily basis is inspiring and breathtaking The common thread that ties all of them together for the these special people is Katie! We’re so happy that Gavin will have another year in her classroom and sincerely hope when we begin the next school year her door will read “2022 Teacher of the Year, Katie Caprino – Special Education Muse”


Thank you for your consideration and time. We wish you all the very best. And thank you for your service to our community.


Warmest Regards,

David and Joreen Varecka.



So, our story here has been a long one and school starts in just a few hours. We’re all very excited about the start of the year and can’t wait to see what it brings for Gavin and his classmates. As they all walk into that room, they will be lucky enough to walk into the room of the Hilton Schools Teacher of the Year!!!!!! Thank you Mrs Caprino! You got exactly what you deserved and we’re all so happy to be here with you to see it happen.



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