Today autism won…that term can be looked at negatively but for me, it is the closest combination of words that I can come up with that reflect how I felt this morning. This morning was officially my worst morning with Gavin… ever. As I looked in the mirror I saw a defeated woman, the same woman I saw the day my Mom took her last breath. I saw a woman who could only think about finding a way to disappear… a woman who felt entirely hopeless. The word ‘disappear’ occurs to me often and although I’m not proud of it I am taking it as my cue to find a way to heal from this unknown world that I am trying to navigate with the help of David and our girls.
This morning Gavin was upset and was unable to verbalize anything besides anger. Lots, and lots of anger! This does not look pretty, it is ugly… it is screaming, it is hitting, kicking, (me, or whoever is closest to him) it is stimming and it is HARD! Most definitely harder on Gavin than myself but it is excruciating and so scary when your child is out of control and you are trying to remain IN control. The ones reading this that are closest to me know control is not one of my strong points. As I look back on the day I have noted that in order to live my Best Life with this beautiful boy I have no choice but to grow stronger from days like today and learn when it’s time to make sure he’s safe but also to walk away. It certainly didn’t help that I chose to stay up until 4 AM completing a project and also scrambling to send out a promised email for another Mom who feels the exact same way I do. It doesn’t help, with the added stress of Covid, David had to travel for work this week leaving Julia and I responsible to keep everything moving as smoothly as possible for Gavin. Consistency is key for Gavin. This week consistency has gone out the window. Gavin had his first Covid Vaccination on Saturday, David left to work go work in DC for the week, Gavin’s Kindergarten teacher (who he adores) is quarantined, many of his classmates are not in school due to Covid somehow touching their lives, and also Gavin’s amazing Respite provider (aka Nanny Lolo, our right arm… usually both of our left and right arms!) was diagnosed just today with Covid. We are all a bit hyper-sensitive to the fact that we must keep Gavin safe from this as best as we can. He is unmasked and not fully vaccinated. To some masking shouldn’t be something we have to do… I get it! If Gavin was a different child we may feel that way too. To some Covid is a scam, but to us, no matter how we feel we need to take it seriously as it could be so much more for Gavin. We must stay a step ahead. Having a non-verbal son that tests positive has the potential to put us on a scary ride one we aren’t willing to give into without a fight. Add to this the idea that we believe Gavin to have a high pain tolerance. This could mean that we are unaware of some, if not all, of his symptoms depending on how Covid presents in him.
Being a parent of a child with autism is not only the hardest thing I’ve ever done, it’s also the loneliest thing I’ve ever done. Recently I reflected on how I have changed over the past six years. I have never been good at remembering birthdays and finding ways to acknowledge friends and family on time. I used to get my shit together in the nick of time! I don’t believe most knew that as I always worked hard at making things as perfect as possible and usually felt confident the gift I chose would be perfect for them. I am typically a very poor communicator with friends and family. Picking up the phone to simply say “Hi” is another weakness of mine. I was always jealous of my Mom and a few friends that know who they are! The ones who don’t forget anything anyone they love has done in their lives. The ones who acknowledge all your accomplishments and your losses every year like clockwork! I am late for most things in life and for that, I apologize to anyone reading this! Before Gavin, I was able to recover quickly and in just enough time to avoid the uncomfortable feeling that I actually forgot someone’s special day. Not because I don’t care, not because I’m some selfish human being, just because… it’s who I am. 6 years ago I was able to provide an acknowledgment before a birthday passed or send Christmas cards that may or may not arrive on Christmas Eve. Now? Now I would say I feel like a failure in this department. When I tell you that I forgot your birthday or I show up empty-handed it’s not because I didn’t want to find that special gift or card for you, I absolutely intended to! When I saw the perfect gift 6 months ago but was running in 30 directions I chose to wait… I always think I should wait until “I have more time to give it the presentation it deserves ”Silly me… that time never ever comes! It doesn’t mean that you mean anything less than you did six years ago. It simply means that I have been unable to get out of my own way for the past six years. If you feel forgotten and you question if I really care or if my family and I really care I will simply tell you this: Autism wins almost every single day in our house.
I could have been reaching for the phone to call you to say “Hi” and at that moment a teacher called to cancel for today or Gavin started to scream in the next room. The sudden fears we all have at our house are these to name a few: Why is Gavin so quiet? Is he into something? Did he fall asleep too early? Is he fully clothed? Has he climbed out the window? Was the front door left unlocked? Did Gavin escape? If so did the cameras watch him wander off? If it’s dark outside will he keep walking? Will he walk in the road and will someone see him and keep him safe?
When I finally remember the task that was left unfinished it may be days or even weeks later. Before I actually forgot your Birthday, Wedding Anniversary, or the Anniversary of your Mom’s passing I was simply trying to get through the day. I’m trying to maintain a happy home, make certain I have someone to be with Gavin every second of every day while still holding the job I love supporting other people like Gavin. I’m mentally exhausted trying to ensure everyone that lives here in “Gavin’s home” is ok. Living this way can be pretty lonely at times. It can seem like David and I prefer not to see you, call you… or you may wonder if we even remember you. It’s absolutely not the case. It comes down to the fact that we are trying to get through each and every day to get to the next and be sure Gavin is thriving, remains safe, is happy, and is loved. Our daily goal is always to give Gavin consistency. In order to create any sense of peace for him, Gavin requires CONSISTENCY! That sounds simple enough, right? Well as we know now with the state of our current world there is no such word! What we are doing is also to give Julia the most normal Senior year we can. She has done so much for us and for her brother since she knew he existed. She has never wavered and for that, we are forever grateful. With all the current variables and being the last sibling to live in the house with Gavin, it has been a lot to manage. We have had Respite workers come and go, her sisters have been local then they have not. In the end, in order to keep our jobs, keep Gavin happy and some resemblance of normalcy she has been there to assist us with Gavin at every turn!
I started writing this to simply say “Autism won today” but what I really meant to say was all this and more. I have felt the need to find an outlet to somehow remind those in our lives how important you are to all of us. We are lucky to have you in our lives and I haven’t forgotten you! Sometimes all David and I wish for is to be reminded you are still there and remember that we know that we have many faults but sometimes we just don’t have the opportunity to take a breath. We simply need others to ask, to listen, and to attempt to understand what we are living through is not easy. Most days we are trying to remain calm with one another because we are all we have. Many relationships can go south with circumstances such as ours. When you hear that I have tagged along with David on a work trip, it is simply to try to bring just a bit of peace within my soul. Our house has a revolving door and a driveway that on most days looks like we are having a party. We need you to remember if you haven’t heard from us we most definitely need you in our lives! We needed you yesterday, we need you today and we need you always. We need you for us and we need you to know Gavin. We want him to know who you are and for him to come to trust you and love you. When we say that we would love for you to spend time with him that is because we do… we want you to learn what he’s like, what it’s like living this life with him and to come to understand the challenges he brings. Most importantly we want you to see and feel the joy he brings to us each and every day! Not only would we love for you to teach him something we promise that he will teach you something and more than you ever imagined! The biggest gift you can offer us is the gift of time! To see you with Gavin, engaging with him and loving on him is what makes our world go round! We want those we love to never give up on us and most definitely not give up on him. We want you to never stop coming to see him no matter how busy you hear us say we are. You may hear us say “busy” but what we are saying is we need you to participate in his busy life with us. Raising Gavin takes more than a village and we welcome you to join! If you can run and keep him safe the best thing for Gavin is a ride to a new place where he can have fresh air, run and just be a little boy! He loves the beach and nature and simply being outside! We’ve learned to embrace Gavin’s differences and we want you to understand them as well!
Please know this: We have not forgotten you! We need you! Most days we are just trying to get through it… through the morning or even the next 5 minutes. We hope that on our good days and most importantly our bad days we won’t be left standing alone. There are many times that David and I look at one another and feel sad that we feel that we are walking on this exciting journey with no one to truly share it with. We have a great team of people who love Gavin but it’s small and we want to include so many others in our lives. His big sisters provide the love and support he needs and often come to our rescue when things aren’t going the way we planned. Not only is Julia a huge help but Doria and Morgan are here to assist us and keep him in his routine when we just can’t do more. Morgan will often do little things which are huge to us… folding laundry, cleaning and organizing Gavin’s things, cleaning our bathrooms and everything in between! Emily has moved back home and she also helps us when we simply need a reprieve.
We also have been given the opportunity to learn and become part of a wonderful community with The Office Of People with Developmental Disabilities. Gavin has services through NY called Self Direction which allows us the opportunity to help to provide him with classes, memberships and so much more! The biggest gift we have been given is the opportunity to have been able to hire a caretaker of our choosing! We have an amazing young lady as part of our family. Lauren is his Respite provider and we feel blessed each and every day that she is with him 6 days a week! This blog wouldn’t be possible nor would it exist if we weren’t given the help Lauren provides by working with Gavin. She has been a huge blessing to our lives and we have now been given another young woman to share Gavin with. She provides him with even more love and care when we need an extra set of hands and more importantly eyes! She allows us much needed breaks and time away to recharge as we fully trust her with Gavin!
It’s often lonely over here on Autism Island… on a daily basis it’s suddenly 12 midnight and we have realized we have forgotten everything that happens outside of these 4 walls until just before we close our eyes and we wish we could turn back time only to fall asleep with exhaustion. Suddenly we are woken to our handsome boy banging on his door as though he’s going to break it down! And so our next day begins again… what does today hold for Gavin and each one of us? Will today be the same as yesterday? Ha! It never is! Every day is full of surprises and we simply hang on for Gavin’s ride! We just hope when life slows down we will not be left standing alone.
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