Chapter 6: Progress is Progress

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My Bean is amazing!  I know I’m probably a bit biased, but seriously, to say that she’s made great progress would be a gross understatement.  Our measure of progress may differ from others, but progress is progress, no matter the speed, and we feel that it should always be acknowledged and celebrated.  It might sound funny, but in her short 10 years on this planet, she has been one of our greatest teachers, so I’ve decided to write a list of things that she has taught us on this journey:

  1. To celebrate differences.  Her mind, and the way she thinks and learns is so beautifully unique.  She will always figure out a solution, even if she takes a different route to get there.  Different doesn’t mean wrong.
  2. Don’t judge.  Before we became parents, we were unaware of things like autism and sensory processing disorder.  For example, if we were in a store and heard a kid having a massive tantrum, we probably would’ve just rolled our eyes and thought to ourselves, ‘what a brat.’  Whereas now, we understand that the child who is having a meltdown could very well be experiencing sensory overload, unable to process all of the sights/sounds/smells around them, and the meltdown is just their way of coping after being overstimulated.  My girl has taught me not to judge a book by its cover.  To understand that while the sounds of a child screaming may be bothersome for other shoppers to hear, what the child is going through in that moment is probably infinitely harder for them.
  3. To respect her choices.  My girl is still navigating around her speech delay, and kicking ass doing so.  Much of her conversation is still prompted, but she still has a voice.  We always want her to know that her opinion matters, and, as the great Temple Grandin said best, that although she is different, she is certainly not less.
  4. To remember it’s HER autism journey, not ours. She is the captain of this beautifully unique ship, and we are merely members of the crew, along for the adventure.  It’s up to her what she wants to share, and what she’d rather keep private.  We will never disrespect her by documenting a meltdown, or venting about “how hard” it is to be the parents of an autistic child, blah, blah, blah.  Guess what?  Being a parent is a challenge, period.  All kids have a**hole moments, and putting your child’s most vulnerable moments on display isn’t being respectful to them, and certainly isn’t helping anyone.
  5. To not care what anyone thinks.  If there is one person I could strive to be like, it would be my Bean.  I used to get so angry every time we went somewhere and people would stare at her while she was making her noises and stimming away.  Like, SUPER  I can’t tell you how much restraint I’ve exercised in the past seven years.  If restraint was a workout, I’d be ripped.  It wasn’t until a couple years ago, when we were at a birthday party, that I had an enlightening moment.  Bean was having a ball, filling up a red solo cup with water and spitting it out, like a fountain.  Another little girl (around 5 at the time) kept going up to her, getting in her face and asking what her name was, but Bean was too immersed in her solo cup water fountain to answer the question.  Later on, while the kids were playing in the pool, the little girl approached me andasked, “how old is she?” to which I replied, “six.”  The little girl then announced to the party, “that’s SO weird that she’s six and can’t talk, why can’t she talk?”  As much as the “mama bear” in me wanted to smack this little 5-year-old, I simply smiled and said, “she can talk, she’s just busy playing.”  When the party was over, and we were getting ready to leave, the little girl approached Bean again and asked, very loudly, “what’s your name?” to which, Bean stopped what she was doing, turned around, walked right up to the girl, leaned in very closely, and loudly exclaimed, “QUACK,” and walked away…like a boss!  If she had a microphone in hand, she would’ve dropped it.  It was perfect!  That was the moment I realized that if she isn’t bothered by other people’s ignorance, then why should it bother me?  What an awesome perspective!  If only everyone would just quack at every a**hole they come into contact with, the world would be a much better place!

 

-Brandy Pavia 

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!