Autism. It’s a word we read about, hear about and might even see if we happen to have a family member, or friend who has a child on the autism spectrum. While I’ve read about it, seen it and listened about it from the perspective of families who have an autistic child, I’ve never read anything from the perspective of a friend. So, when my Esposa Janeli asked me to write about my perspective I felt like it was an opportunity to share what’s in my heart.
Yep – it’s one of those blog posts…
I’ve been privileged to have a few friends with the most incredible children, who were born autism, a beautiful genetic disposition. I’ve learned, listened and observed, the one things I can say is – these mothers and fathers are some of the most amazing, honest, loving human beings I’ve ever met. I’m not trying to be mushy here, it’s real. If you have a best friend or family member who has a child on the autism spectrum you know exactly what I’m talking about.
In this particular post I want to talk about my experience with my Esposa Janeli and my beloved Maximus. I met Janeli and Jake when they were first dating and watched them grow their love and family over the past few years – AND WHEN I MEAN GROW THEIR FAMILY – I MEAN LIKE REALLY GROW THEIR FAMILY! These two took the term “honeymooning” to another level with all that love going on *wink *wink! And like I’ve always said, “Get it gurl!”
In all seriousness, I need to take a moment to describe this family, maybe not how others might see them, but how I see them. Stay with me here. If I don’t describe them to you, you might not understand the whole point of what I’m trying to convey. Keep reading.
The Castrejana family, who honestly seems more like a colorful, wild tribe. A family of six! That’s a lot of people! Janeli is a mermaid-haired mama who calls it like she sees it – in English, Spanish, or slang depending on who she’s talking to, takes shit from no one, loves as a hard as her addiction to coffee and makeup, manages to be an entrepreneur, mom and overall badass with her punk rock-like, star trek obsessed, humanitarian, incredibly loving and dedicated husband in tow. Both with open hearts and snarky wit. They would do anything for the people they love – no matter how crazy their lives might be – they make the time. They’re those people. The outgoing, loud, crazy, kind of weirdo type people who I have a deep soul connection with (well mainly Janeli – love you Jake, but your love of Star Trek takes points off – Star Wars all the way bro).
They’ve managed to create some of the most wondrous children. The eldest, Amelia, a ten-year-old beautiful fairy-like creature with a heart of gold, four-year-old Ocho – who by all accounts is an old soul with a flair for music and the ladies, three-year-old Max who has a smile worth millions in gold and will be NASA’s next famous engineer and finally the baby beauty Ezri, over one year of age and slaying it in her unicorn pants and pigtails!
Max is at high risk of being on the autism spectrum. He awaiting formal diagnosis from a developmental pediatrician, but his speech therapists, occupational therapists, family, and friends, like me. know he’s somewhere on the spectrum. I remember, when he was barely walking, Janeli said, “I think Max might be on the spectrum.” It struck me. I didn’t know what to say, or how to respond. I just listened and honestly I felt like she might be jumping the gun. He was just a baby – how could she possibly know that? I was baffled.
Lesson #1 – Never underestimate the power of a mother’s intuition and do your best not to judge her with judgy mom thoughts. She’s not crazy, she just knows.
She was right. The more Max grew, the more apparent it became that he saw and processed the world around him differently than other toddlers. And so I listened – without judgement. There were times when I listened to my vibrant friend as she cried because no one was hearing her, how family didn’t believe what she was saying, how the resources for her child at his age were so limited. I saw her anger build as more and more family and friends looked at her like she was insane for saying Max was on the spectrum – she’s not a doctor, so how would she know? Oye esta – she’s just crazy.
But she did know. SHE KNEW ALL ALONG.
I watched her at birthday parties when Max reacted to the chaos of a toddler birthday party with tons of people running around, colors flashing, annoying toddler music blaring, kids singing, laughing, and others screaming with fun. I mean now that I think about it – I left there exhausted, irritated and needing an adult beverage. Max reacted with fits of yelling, crying, screaming and biting – she and Jake had the look of sheer frustration and possibly a moment of embarrassment as other parents looked at them while they handled the stress of the moment, not to mention managing their other little ones. I observed her as she never once apologized for the incident, but rather took that moment to educate us that Max was on the spectrum.
I observed her remove herself and Max from the big groups during parties to play with him in other quieter areas to make him feel more comfortable. I was there when he pushed other kids away because he was simply uncomfortable and she had to apologize and explain to their parents why it happened. I saw the angst on her face and her actions every single time.
I watched the others around us, no one knew what to do. They would either ignore the situation, or say nothing. Sometimes teacher friends would step in and give her awesome encouragement, but majority of the time silence was the visitor in the room. Which didn’t make anything better, instead it made it awkward.
Despite the uncomfortable moments, embarrassment, and frustration JANELI HAS NEVER STOPPED.
She never stopped bringing Max to the birthday parties, she never stopped integrating him into social situations, she never ever, ever, and to this day, will never give up.
Janeli might tell you she’s a hot mess on so many levels, (we all are) but there’s one thing you can never say – you can never say she isn’t consistent in her tenacity and persistence in ensuring Max is given the same love and opportunities as other kids.
Lesson #2: Saying and doing nothing is BS. Get over your fear.
I’ve learned that saying/doing nothing makes things worse. I believe we don’t do anything out of fear of getting involved, or saying/doing the wrong thing. Well trust me when I say parents of children with Autism, or any disability for that matter, have heard it all! They would rather have your help and encouragement than none at all. Your social norms aren’t their social norms, if you think you feel awkward, how the hell do you think they feel?
Not just as parents, but as women we must stick together. Put your fear aside, get off your ass and make the effort to help your friend in distress. Whether it be grabbing their other kids and taking them to do something, jumping in to help however you can (in a calm and positive way), getting them a drink for a post-tantrum toast to them winning at this thing called “parenting,” be a listening ear, shoulder to cry on, cheer them on, encourage them, hug your friend, sing to them, make them laugh and most of all love their child as much as you love your friend.
It works. You just have to stop yourself from being weird about it.
Lesson #3: Go with the Flow
Whenever I’m with Max I go with the flow. I feel out his mood and roll with it. I’ve known Max all of his life, there are days when he loves me and others where I really don’t exist, but I love him just as he is. I approach him with one open hand and a smile.
I let him come to me. If he decides to hug me, I hug him hard. Soft touches or gently patting his shoulders are triggers and make him uncomfortable. I get it – I hate when someone pats me – it’s annoying. Plus, big hugs make for really good hugs!
If there’s water or dirt around – we’re all about it! Sensory is huge! Swimming is where we really have a good time. He’s all smiles and lets me hold him and twirl him in the water. Feeling out the moment has been our jam and I’ve learned so much about him because I’m not worried, or nervous and he can sense that.
Watching a cartoon on our phone or iPad is awesome too. STOP YOURSELF FROM JUDGY THOUGHTS WHEN YOU SEE LITTLE ONES WATCHING ELECTRONIC DEVICES. Sometimes this is a saving grace – autism spectrum, or not. Hell – we can’t even take credit for our own child’s education – she learned her ABCs and 1,2,3s from Leap Frog videos! Thanks Leap Frog!
But I digress.
Lesson #4: Dance it Out!
Earlier this year Janeli called me in tears scared to death that Max would stop speaking all together. Her research found that some children on the spectrum lost their speech at age 3, as if they had never said a single word before. She cried so hard because Max was starting to regress. I heard her anger at the “system” for not having legitimate diagnosing processes and therapies for children under the age of four years. She would be dammed if she lost this battle – she was NOT GOING TO LET IT HAPPEN! I felt her heartache, I listened and I cried with her. Then I prayed.
From that moment the goal was to not lose Max to his autism. And they didn’t lose.
A few months later Janeli called me in tears again, not because Max stopped talking, but because HE SAID NEW WORDS!!!! And from different ends of the phone – we danced! We screamed a moment in joy and danced! Not just because Max said a new word, but for every single moment it took for that to happen.
So here we are a few months later, still so many emotions every day. Good days, bad days, days where she wants to punch the wall, pull out her hair and scream, but there are more exciting days than rough ones. In fact – today Max said a huge word, a word that not only describes him, but his mother’s love.
Morale to this story of my perspective – try hard not to judge because let’s get real at some point we all do it, but TRY not to, stop being scared, open your mind to different possibilities, roll with the moment, and love your friends
much love ,
Maximus The Great