April is worldwide autism awareness month and specifically the 2nd, being the day to show support. I plan to light it up blue with some cool led balloons, encourage all my family and friends to wear blue, and bake a cool gluten less cake for us to enjoy. Then I will probably cry..Again! I'm 18 months into this new way of life and really it's HARD. Of course, we adore our son and he is spoiled by his siblings with endless love and concern. His team puts in hours to teach and guide both him and us. But it's hard! I also know that hard things teach us good things.
But for right now this is my personal account of how aware I am:
I'm so aware of autism now that it hurts. And when I say hurts I mean it in every way. Here's what it is like for ME, as a stay at home mommy of 4. My older kiddos are 16, 11,&10 (2 are home schooled) Jojo is 3. He was DXd at 24mo right before he turned 2. So after 3 yrs this is my account of being fully aware of autism.
Emotionally I'm a mom that has been advocating since the day after he was diagnosed for every service and support he can get. It doesn't come easy and takes a toll on ya. At first, I felt so on top of the game because I was able to get myself very well versed on the "system" and the interviews came and went, mostly in my favor. After so many evaluations though, you start to avoid them like the plague. Who wants to hear that progress has stalled out or that for the last 18 months your child's cognitive status is that of a 15 mo old or maybe I might hear 18 mo, if the evaluator feels bad for me. It's hard to hear. So you take the positive and run with it....you share with the few (and it's just a few, for real) the moments that seem so huge now. He made it through a drive thru without banging his head!! Or we went to a birthday party and lasted almost an hour! He did a great job on a therapy day! Made it through a whole week without breaking down! I really only have a few people I can talk to and be real about the triumphs and the knock down days. Those good days leave me with a sense peace and hope for a good future for my lil guy. The hard days leave me feeling lost. Defeated. Depressed. And plain sad.
Then there is the guilt. I am constantly in a state of guilt for my older kids. They are going through this process with us. They can see and hear and feel it all. They have been great with telling me when it's too much. I make time for them one on one, but I feel like I miss them terribly. I am planning on transitioning my 2 into Public school next year. Only because I feel they need an outlet. That's so hard for me because I love home school. Can you just imagine this emotional roller coaster?
physically I am just exhausted. Sleep deprivation never goes away. My hubby and I trade off on night duty. We both need a good week of sleep. Jojo has never slept thru the night. Not even after being sedated for surgery, as soon as he decides it's time to get up he just goes. This is taking a toll. Heck I need my beauty sleep AND a great concealer because I'm looking like I could cast for walking dead. I am fully part of his therapy, I love seeing him complete a task or try so hard. I often wear battle marks form his session's. He doesn't want to do things the way we expect, he has his own prewired planning going on. So I get the jist of his aggression and my body is bruised and the scratches turn to scars. Somebody asked me if I had some disease that cause the spots on my hands. .nope just a three year old with non verbal autism. I have torn shoulder ligaments. Back spasms and old issues have came back with vengeance. Anxiety and insomnia are my battle. They are evil because the end result is usually increased pain. But I just can't help myself, I am so used to fixing everything for everyone so at night when the house is quiet I research what may be the cause of a new behavior or stim. When I do fall asleep it's cut short by my lil guy waking up to just see what's up, so I'm always running on empty.
This the WORST part of having a child with an invisible disability. He looks completely normal, well actually he is an absolutely handsome lil guy! He stims a lot. He is loud. He moves differently. He walks on his toes. He flaps his hands so fast when he is happy or excited. He squawks like a pissed off bird at least 80 times a day. I see the looks and feel the sting of comments. I can ignore most but some cut me to the core. I want to tell Em...He isn't a brat he is flipping out because the lights just flickered and I turned my cart left and not right! ! He has Autism and sensory processing disorder and chromosome 6 deletion all of which causes global developmental delays, and he can't speak so he screams. My baby is 3 and a half and he can't speak, sure he will mimic a prompted sound here and there and he will sign EAT and MORE. All of which this mama is extremely thankful for but, it doesn't pacify the need/want to hear those precious words: I love you mama.
I long to hear you voice, I dream of just walking hand in hand with you around the block talking about the beauty around us. I imagine the feel of you gently giving me a hug. I am aware that Autism is here to stay, yup it stays. No gluten free hyperbaric oxygen therapy with a side of the latest supplement is taking this away. My son's brain is wired differently. His neurons fire too rapidly sending all sorts of mixed signals. He is amazingly different and someday the spinning may slow and communication may start and when that day comes I will be the one flapping and screaming! !
#TeamJoJo forever,ever ♥
here he is sitting in a discovery bin.best way to play (: