Living With Autism
My amazing daughter Kayla is our oldest, she and her husband Jeremy have three boys diagnosed with Autism. Recker is the oldest 8 and 1/2, Ezra is 5 and Theo just turned 2. We love these boys so much, our entire family is in love with them, but even being the ‘grandmother’ (Bonbon) I don’t see the day-to-day struggle, the melt downs and the emotional rollercoaster Autism creates in a home. Kayla does such a great job creating awareness on social media and within the walls of our home, still I can’t imagine the 24 hour care she gives them individually. Each one of these special spirits come with their own needs, Recker is amazingly sweet and kind but is non-verbal, still wears a diaper, has to be constantly watched and shows his frustration by taking it out on mom or dad with a fist once in a while. Recker also loves to be outside, swims like a fish, is intrigued with fire and loves Disney movies.
Ezra, boy oh boy, this guy is talking up a storm but deals with emotional break downs daily, he can be irrational and moody it’s a constant wining problem. Ezra loves to be around family, plays well with other’s and wants to be an ‘ar thist’ (artist) he’s also scared to death of creepy crawly things, spiders, bugs etc. He is probably the most literal child I have ever met, if I said to him “You are cute” his response most likely would be “No, I am Ezra” This sounds like typical behavior and yes, it could be however you’d have to see how he reacts to understand the emotions behind his fears. When he leaves our home he always comes up to me and say’s “I sad” I already know what his response is but always say “Why are you sad?” He comes back with “I going to miss you, I not want to go home” but if his parents were to leave without him there would be a total meltdown. So we hug, say “I love you” and off he goes.
Theodore, Theo, Teddy….those are his names. No matter what we call him he comes running. Theo is on the spectrum, at what level we don’t know. Kayla say’s he shows signs just like Recker and Ezra did, so right now while he seems typical we enjoy every minute of his cuteness because we never know when or if regression will start. This little guy is pretty content, he points and shows us things he wants, takes our hand to lead us to rooms to play and is just starting to say a few words. Sunday night he took all the Disney magnets off my freezer one at a time and brought them to me saying “who that?” and as a typical child would do at age 2 he is constantly asking “what that?” while he points to something he wants us to explain. If I ask him “Do you want a popsicle?” (or just about anything I ask if he wants) his answer is “uh huh” while shaking his head “yes” He also loves the outdoors, but does not like to swim in the pool like Recker and Ezra do.
Kayla and Jeremy are absolutely involved in these boys lives, caring and loving for them no matter the circumstances. I know they have their moments when they need space to cry, I also know they sometimes just laugh because what else can they do? Even as Kayla’s mother I will never understand the constant emotions they endure. I’m not sure I could do what they have and will continue to do, but I am eternally grateful for Kayla’s openness and honesty when teaching me about ASD. She is the mom who constantly researches and studies, wanting to know everything she can to help her boys process and deal with their diagnosis.
This is something she recently posted, it broke my heart but it is the reality of any parent who has children with Autism, oh and let me interject here one of the things Kayla kindly taught me–people with Autism are diagnosed it is not ‘who they are’ saying a child or person is Autistic is defining them.
and my personal favorite post, I don’t live in ‘judgement’ so this does not offend me, if it does offend you I’m sorry but it is the real life of so many families dealing with Autism. I’d like to also insert at this moment children with or people who are diagnosed with Autism are not defined by the disease, it is something they ‘have’ not ‘who they are’ Autistic defines them, being labeled as a person who is Autistic is hurtful and not politite
This was her post and her comment was “We are literally getting our asses kicked over here.”
XOXO Monya Bonbon