Chapter 3: Just Keep Swimming

by Brandy Pavia

It’s been seven years since we started out on our autism adventure.  When I think back to where my Bean started out, and look at where she is now, I am in awe of how far she has come, and reminded of just how important progress is, and how much I have learned throughout this journey. I wanted to share a few of those things with you…

I feel blessed because of autism.  I know that may sound weird, but autism has taught me never to take anything for granted.  Ever.  In our home, every “milestone” is celebrated, no matter how big or small, and regardless of when the milestone is reached.  When our girl said “Daddy” appropriately for the first time at almost five years old, we did everything but light off fireworks in celebration! We celebrated when she used the words “yes” and “no” in the right context, and freaked out the first time she put 3-4 words together to form a sentence at 7 years old. These things may seem odd to someone who doesn’t have a differently-abled kid, but for us, we know how hard she has worked to get there, and it makes those accomplishments that much sweeter. It’s so important to us to teach her and her brother that everyone does things in their own timing. That just because Bean may have started talking later than other kids her age, or learns differently than them, doesn’t make it wrong.

I feel thankful because of autism, because it has taught me NEVER to judge a book by its cover.  Picture this – you’re at an event, such as a wedding, and see a kid holding their ears or having an uncontrollable tantrum.  Your first reaction is probably, “what a brat,” or “thank God that’s not my kid.”  Autism has taught me to stop & think before passing judgment. Maybe that kid has sensory issues & doesn’t like loud noises, or maybe they’re overstimulated and can’t process everything that is happening in their environment.  True, there’s a chance that the kid may just be a brat, but maybe, that outburst is their only way of communicating exactly how they’re feeling.  Behavior is communication.

My very first experience with people staring at Bean was during our trip to Disney several years ago.  She had a meltdown in a restaurant in the Magic Kingdom…during the lunch rush.  As she got louder & louder, I felt more eyes looking, and then I felt the tears start to fill up in my eyes.  (In reality, when a kid is taking a fit to that degree, most people are going to look, but since I was in protective mama mode & my kid has autism, it hit a nerve.) As I’m trying to scoop her up off the floor of the restaurant, I looked around at everyone staring at us in our section and apologized for disrupting their meals, explaining that she’s autistic and is overstimulated.  I don’t even know why I said anything, but for some reason, I felt the need to explain.  It was in that instant that a random woman, a wonderful, caring random woman, stood up & said to me, “don’t you apologize for anything, she is perfect and you are doing an amazing job.”  As she held the door opened for me, I looked at her with tears in my eyes & just said “thank you,” and walked out with my beautiful little Bean, who by this point, was happy as could be since she was out of the restaurant!  That woman had no idea how much those words meant to me.  I will never, ever forget that day, or that sweet lady.

I am blessed by autism, because it (and Zoloft), has helped me to be a more patient person.  To take each day as it comes and not try to find a magic “cure,” or try to “fix” my Bean, but rather, to find new ways to help her learn, succeed, and be happy.  She is not broken, or defective.  She is a beautiful, smart, energetic, lovable, PERFECT little girl.  Autism is, and always will be a part of who she is…why not embrace it!  We never want her to feel ashamed or embarrassed of being different, because it has always been those people who are “different” who have changed the world.

Lastly, autism has taught me a profound sense of respect.  To understand and recognize that this journey isn’t mine, it’s Bean’s. It’s up to her what she does or doesn’t want to share, and I made a promise to her that I will never broadcast her meltdowns, or share things without her consent.

Bottom line is, autism has helped shape our family for the better by teaching us to focus on the positives. To find the silver lining in the darkest of clouds, and to never give up. It’s taught us to never stop advocating for acceptance and inclusion, and to always include her in the conversation. She has the most amazing mind, works so hard every day, and we’re so proud of how far she has come. There’s no limit to her potential if she just keeps swimming. ♥

 

Brandy Pavia is a working mom from New Jersey, with two amazing kids: an autistically awesome daughter, “Bean” & an adorably sweet son, “Bear.” Together with her husband, and their dog, Penny, (who is like one of their kids), she enjoys sharing her family’s adventures and encouraging others to embrace autism along the way!