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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Covid-19 and Autisim

Well... it happened... Gavin tested positive for Covid on Friday. No matter how hard we tried and all we did to keep him safe...


It. Happened.


What most don't understand about an Autistic person is that change or lack of structure can set them back and cause regression. The regression that happens is unable to be measured by even the brightest Doctors in the field. These past few years have hurt Gavin in ways that we can't even grasp. When we had to quarantine as a nation it was the beginning of a very dark time for him. Yes, it was a dark time for all of us as time stopped! Gavin regressed... most kids his age can maintain the knowledge previously learned and if they are lucky they have parents available to teach them new things that normally there wouldn't be time for. Gavin's growth stopped and he became very angry. Did his ability to learn stop? No... but his behaviors get in the way of allowing him to learn new things and show us how much he truly understands.


Gavin is a lover and he loves his teachers and anyone that is sharing time with him. When we had remote learning that made things even worse. My theory is this; Gavin grew angry with his teachers and therapists. Seeing them on a computer screen meant that he could not touch them, have them hug and squeeze him and he couldn't kiss them! Gavin is a lady's man as I often say. I always joke that he takes after his Papa as we always said that my Dad was a flirt. My Dad never had to do or say much with the ladies and they would always swoon over him. A smile and a glimpse of my Dad's biceps, back in the day, made the women flock to him. (Or so it seemed when I was growing up). Mom got used to it and I'm sure it bothered her but she handled it fairly well. So with that said; Gavin couldn't be with his ladies and I truly believe that Gavin was angry with his teachers as I believe he felt deserted. He didn't engage in "Zoom School" (as we called it) and he didn't move forward with his growth with his behaviors. Gavin is brilliant but it is hard to know what he knows as he doesn't speak. Gavin is such a busy boy keeping him in one place to find out what he understands is hard to quantify.


When going back to preschool I recall it took quite a few months for his teacher to reach out to us letting us know that he was back to where he was when the world stopped. That was heartbreaking to us. Remember when you have a kid like Gavin and you are proactive and get him services starting at 15 months of age you feel rather defeated when it all comes to a screeching halt.


When Gavin's classmates come in contact with someone with Covid and his classroom closes for 10-14 days our hearts break as yet again Gavin will regress. Sometimes we get lucky and he doesn't skip a beat it all depends on what supports we have at home for him and how engaged we are as well as his caregivers. Trying to get life in place when these things happen has fallen on my shoulders and that is so hard on me. Gavin continues to require eyes on him at all times. Gavin can not be left alone. This means I can't put on a TV show and go into a Zoom meeting. I can't take the garbage out to the curb without worrying that he is doing something that he shouldn't. David spends at least 1 week a month fixing or creating something to keep Gavin contained and safe.


With Gavin contracting Covid this past week it begins another heartbreaking process for us. He will be out of school for 10 days starting today which means that he will not go back to school until Friday, but more than likely the following Monday. David and I work full-time. We pray that his sisters or Caregivers are available to step in and help us to support him with his learning and more importantly keeping him safe.


Luckily Gavin had a fairly easy case of Covid and he is back to himself in just over 24 hours. He has a cough still and seems to be a little off but overall he is doing well. I pray that he stays safe and we don't have to go through this again. The scary part of a non-verbal little boy with Covid is that he can't communicate to us what hurts him. Even on a good day if he has an upset tummy he won't usually show us where it hurts he will just act out and we can only guess what is affecting him and his behaviors.


Gavin is 1 shot into his series and he has a few weeks before his 2nd vaccine. Again something we weren't excited about doing but David and I made this decision based on many discussions with some very important people we trust. I respect everyone's decision to do what they feel is the right choice for them and their families and we only ask that you respect our choices. At the end of the day, there is no one standing before us that can tell us with 100% certainty what the future holds, for now, we do what makes the best sense for us as a family and as primary caregivers for Gavin.


Stay safe out there everyone! Respect others and put yourself in their shoes. Ask questions of others and treat others as you would like to be treated.










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