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What's the score?

So, I must admit, I always need something to rate performance on. I guess as humans most of us do, right? I mean I understand the idea of not keeping score at a kids’ soccer game to a point, but I’ve always joked that you have 80 more years of disappointment ahead, get used to dealing with it now. I’m aware that it’s a cynical look at things and it really is a joke, but performance does matter, sorry folks, but how we rate and track performance, that’s where the real wins are.


I’ve played sports much of my life at varying levels of personal skill and of course, once the wins and losses are counted it’s interesting to investigate the individual statistics. Goals, assists, hits, turnovers time on the ice, penalty minutes, faceoff winning % and so many more stats in my favorite sport, hockey are tracked now. I can’t believe some of the stuff they can watch and analyze. Some will argue that the stats don’t matter but, those details, they tell a huge story. I have a friend locally that has coached at all levels of ice hockey including my team when I played in high school and even if he doesn’t realize it, I learned so much more about the fine details from him than anyone else and these skills still apply in my professional life too. Goals and assists to a hockey player are easy ones, but when you get down into the finite details of a player’s game, that’s where a real coach can make that average kid a star and the one riding the bench a key contributor if they are both willing to really work at it. This is where improvements will happen not with just physical skill increasing but by gaining a better knowledge of the game and the details that make the difference. So, VJ, Thank you, Coach!


What does this have to do with Gavin? So, lets look at kiddos like Gavin and for now, we can take the 5 others in his class and look at the stats, any stats. Right now, like many sports teams at that age (5-7) the skill levels are varied greatly, each has strengths and weaknesses based on their own story. Easy enough, right? Well, it’s not always been like that for us. Here’s the deal that is so hard for parents, at first, to get. We can’t compare the score and performance of any of these kids the exact same way. I’d make the argument this goes for all kids but for today, we’re speaking about a classroom of special kiddos. I’m working on another piece about the phases of things we’ve gone through in Gavin’s lifetime so I’m jumping ahead a bit here, but this is part of the phase of mourning I’ll speak of in great depth soon. This is where the work begins for team G!


Yes, team G! Last week I was having a conversation about meds for G with one of the medical professionals on his team and she seemed truly blown away at the details I had about Gavin. It seemed every question she had for me was answered in detail so she could make a well-informed decision on how we’d proceed. I must admit, it was fun a couple of times to say no, that’s not the way to go because of “x”. I’m far from a master at all this stuff so while I was feeling some pride personally, it was all about the people that G is surrounded by. They are the ones that fed me the information so I could advocate for G. I know everything I write includes them but, there is a reason for that. They are the rockstars in our world. Joreen and I act more as the General Manager for Team G and let our coaching staff do what they do. The “x” factor for the visit with his medical team were the statistics! Just like an athlete the stats are taken, researched and coaching starts. What’s cool, is the fact that Gavin’s school teachers, his home teachers and his family teachers are all in communication all the time as one group! Sharing the statistics, they each keep. Now for G it’s not all about how he performed. Right now, what’s just as important is how the team got him to perform at his current level. They’re laying groundwork for his educational future.


Let’s go back to that coach in hockey. Every one of us needed something different for effective coaching to get through to us. Let’s see, there is the player that just needs to do it 1,000 times and then they have it. There is the player that needs the assistant coach with the soft voice to pull them aside, explain it in a nurturing way and offer some kind support. Then there is the player that doesn’t mind Jimmy Duggan (Tom Hank’s character in League of Their Own) telling you to start using that lump 3 feet above your ass! That was me by the way and I truly hated the coach that wouldn’t say a word and knew it all and assumed we did as well. My point here is that we all needed something different and many of us could use a little of it all from time to time but finding the right stuff took patience and a big team of experienced coaches.


Back to G. As parents we’re surrounded by milestones for our kids, right? Well, as the dad of a special needs kid it was a hard lesson time after time when G was missing them. This kid, I swear he’s brilliant but, he needs a specific plan for his way of learning. G is like most kids in that they will take as much easy time as you give him and I’m probably the worst as far as being too easy. I love to just hang with G, let him play on the tablet a bit too much and honestly, just watch him enjoy his life but that’s not at all what’s best. G needs structure. He needs his visual schedule that tells him before he gets his tablet, he has 5 other tasks to complete. Now G is also slick and a little bit of a scammer in that he will try to move the scheduled events around to his benefit but deals with the reality well. He may even turn on the lovin’ to try shape things as he’s like but as a coaching staff, we need to maintain our discipline and keep him on task sometimes. Everyone on Team G knows how he best learns and when we make a new discovery it’s shared quickly. Just like sports there are periods of time where it feels like Gavin is on a hot streak. He’s locked in and learning a new skill, combining something already learned or showing us something we didn’t even knew he was able to accomplish which is awesome and just shows, the coaching staff is on their game too. There are also slumps, happens to the best, but those are the times we all dig in and together look for a slump breake. So, these are the times we review the stats and create a coaching plan to help get him on his next hot streak.


Guys, this stuff isn’t easy. It’s especially hard when G can’t speak or help lead us like we would normally have from a 6-year-old. But, as a member of this team, it’s our job to make sure we see and understand the stats daily. G makes bigger gains than we realize sometimes. This past week we received the video below from his school team and it was waterworks for dad. I had no idea G was working on his addition using touch points and this was the first time they were taken away as a tool and the little man smoked it! He shoots, he scores! I haven’t asked but, I bet the other 5 kiddos all have a different game plan for the same goal. That’s where these teams, like the one we have all worked hard to assemble, win even when the data isn’t perfect.





As an aside, that phase of mourning I mentioned earlier, here’s a bit about that. This is the portion of the program that is therapeutic for me and part of the reason why we’ve created Gavin’s Voice. This life post diagnosis has at times been so hard on us all as a family. The list of things that are challenging with Gavin can feel so long at times but then that kid is near you and well, it’s time to get over it because he is very much alive and happy and perfect. I must admit something though, it’s the first time I have said it, well, wrote it publicly, but I struggled within my family for a while when things started to look like G was on the Spectrum. Gavin has a cousin who’s about 6 months older than him. When the two of them were very little I dreamed of them in the same school as we share the district we live in and playing sports together, but we’ve had to change that a bit. It was easy to try and compare Gavin with his cousin, but it wasn’t fair to either of them. We were always looking for that sign that G was just a bit behind, waiting for that next visit where G would talk as much as him, but it wasn’t coming, and it hurt. It wasn’t jealousy at all but sadness that this perfect relationship wasn’t going to happen, at least not now and that G had an uphill battle. This was part of that mourning phase, at least for me, that I speak of. Now, Gavin’s cousin, Weston, is a kind, smart and gifted kiddo who I just love. I love that he gets G as he is and who knows what the future holds for them together. It may be a little different but, they are both superstars and I just hope the future holds amazing things together for them along with all of Gavin’s family.


The opportunity is in the details (statistics) and Gavin continues to grow, learn, and love because so many people care about those details. We will work hard to maintain the best coaches and stadiums for this kiddo to play in and that along with a ton of love from all around us will prove we’re not alone and show the world that he truly is a special child. Gavin will continue to define the diagnosis, not be defined by it.


Thank you all! Much love

DV

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Happy belated Thanksgiving everyone! The 2022 Thanksgiving at the Varecka home will certainly never be forgotten! Let me tell you why! As I’ve said before, with Gavin, it’s just easier to host maj

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