I’ll be honest, when I titled this blog I was trying to think of some sweet, cliche, autism quote that would be fitting. Instead, I chose to just be honest and raw with y’all. Over the last year and especially the last six months, autism in our home has been harder than I had pictured it would be in my head. One of the main reasons I started this blog was to help raise awareness for autism and to soften the hearts of others towards the special needs community because hey, we out here! We are everywhere! 👋🏻 … BUT it is so extremely difficult for me to form words from my emotions and thoughts on our experience with autism thus far.
Our little Haidyn was diagnosed with sensory processing disorder (SPD) and what was considered, “level 2,” (moderate to severe) on the autism spectrum at the age of 3. She is now 4.5 years old and let me just tell you…. I knew absolutely nothing almost a year ago when she was diagnosed. Guess what, though? I still know nothing. I honestly think I feel more lost now, in this whole world of autism, than I did when I had zero education on it. See? Confusing, I know.
We had her tested by a psychologist that involved a series of appointments, testing one on one with her, with us as parents, questions, questionnaires and then finally, a follow up with a diagnosis. Her psychologist was AMAZING, thorough, patient and super informative. If you’d like her info, I’d be happy to share! When her pediatrician initially mentioned autism at a developmental assessment we had prior to her diagnosis, we assumed that IF Haidyn was diagnosed, she would be VERY mild. She was verbal, she understood what we were saying, she played with her friends and she was just a little nervous about a few things. When they say that every autistic child is unique, they are being real. The spectrum is so broad and the quirks, so wide. We just didn’t know… but we are learning with each new day.
Y’all, I laugh at myself now. I laugh and I cry. I laugh because I thought it was so simple and I cry because how did I not see it? It was all there. Almost a year later and I feel like the autism flows equally with the blood in her veins…. but the hard part is helping others see it. Yes, she is verbal and she can talk but does she truly understand you? Sometimes but more often than not, no. Haidyn speaks and communicates everything she knows from repetition. The lullabies she sings are from watching the same YouTube kids channels over and over again. Does she play with toys? Yes… but she is OBSESSED with baby dolls. Normal for a girl, right? No. You don’t understand when I say OBSESSED. I mean it. Does she play with other kids? Yes, absolutely yes. She loves other children. The fine line is when it comes to pretend play. If all of the kids are running in a circle, Haidyn will be right there with them, but if they are playing something that involves pretending, she just can’t grasp that concept and prefers to play in her own world. Her attention span is also about 0.000999 seconds long and she probably wouldn’t run in a full circle before getting distracted.
I didn’t realize that autism would affect every aspect of our lives. That it did, it was and it will continue to do so. She is autistic and there is no changing that. Instead of teaching my daughter about the world (which I am still doing), I am also having to teach the world about my daughter. I love advocating for autism and I find true passion in it but sometimes it is mentally and physically exhausting. Others just do not truly understand the needs of autistics and all other special needs humans on this earth unless they deal with it on a personal level. I don’t say that to judge, I say that because I was that person too. I didn’t know that our days would be filled with meltdowns, poop (A LOT OF POOP), so many broken household items and toys, stimming, hitting, clapping, escaping, fears and the never ending hunger. I didn’t know that I wouldn’t know how to fix it all.
Nothing is simple, or fast, or on time, or a quick fix around here. Life isn’t dull but it dang sure isn’t all sunshine and rainbows either. Life with Haidyn is a lot of work and even though it isn’t all easy, it’s all worth it. She has humbled me in ways I never knew possible. I find myself on my knees almost daily, praying to God, to show me grace and mercy, to allow me patience and tenderness, understanding and opened arms, and that Haidyn will live the best life meant for her. I’m not sure why he thought I was meant to be an autism mama because I’m pretty sure I fail, daily.
I hope Haidyn never sees that she’s different and IF she must, she sees it in the most positive of lights. She is my light and she is my hero. To see her fight so hard to understand the world going crazy around her…. ugh, I wish I could see inside her little brain. I wish so deeply that I knew what she was thinking, feeling, fearing and loving… but I do know she loves me and her daddy. She thinks sissy is the funniest person ever and she loves her puppies every day. I wish others could see her how we do.
So, if you’re that person in Walmart that smiles at me. Thank you. I appreciate it more than you will ever know. What you don’t know, is how I mentally prepare myself every single time before we leave the house. Is Haidyn’s bag packed with all necessities? Speaking of necessities, pull-ups, because no, we aren’t potty trained and public restrooms SUCK. Hello world, let’s make it a sanitary place for the special needs community too!!! I am constantly preparing for what can go wrong. Are we going to have a meltdown? Are we going to pitch a fit because mama said, “no” but then get so mad that said tantrum flows into a meltdown and all control is lost? Will we survive Walmart?! Somewhere new? That could be bad. Am I prepared for all of the awkward stares and attention when my child is hollering, slapping me and losing her mind? Am I ready for one more lady to look at me like I sexually assault my child as she yells, “don’t hurt me” while I change her in a public restroom because her senses are on overload? Am I ready for the odd stares when someone asks me how old she is, I tell them 4 and then they seem confused based on her speech and actions? Am I ready to constantly remind her to keep her hands to herself, not wreck the store, sit down, quit licking the buggy and to not slap mommy one more time because IT FREAKING HURTS?
It is mentally exhausting to always be so hyper alert to everything that can happen, will happen and that will never go as planned. Life is a mystery with Haidyn Grace. I originally thought her autism was getting “worse” but as I learn, I think that she is just growing but has no idea on why or how this world keeps changing and her little body is overwhelmed.
So, thank you to her therapists who always show me how much progress she is making. Thank you to all of my mama friends at therapy, that do autism too, and have taught me so much. Y’all, you just get me. Thank you to the lady that hugged me in McDonald’s when I wanted to cry after a huge meltdown. Thank you to the lady at the nail salon that interacted with my baby after she smacked your butt multiple times (dang sensory seeking), and thank you to everyone that just smiles. Just accepts. Just loves.
I feel as if I’m mostly complaining but I promise you I am not. I am learning. I am grieving about what I THOUGHT life would be and quickly learning that autism will change that. I am adjusting and so is our entire family. There is so much more I could say, and so many more topics related to autism, but we will cover those with time. Just know, special needs mamas, I feel you and I see you! I am proud of you!
& if you’re that person that just smiles, i freaking love your face. 🖤