Posted in autism

Brussel Sprouts and Bubble Baths

Tonights bubble bath ended in tears and screaming, a dripping wet and sobbing kid with a little quivering chin begging to get out. Bathes are usually a go to for fun and calming down but tonight it was like torture for him. Cold, he kept saying as I dried him off. His face was all crumpled, his eyes all red and sad inside. Theres something about drying him off after a bath that is one of my favorite mom duties but tonight he just collapsed into my arms, all bundled up in his towel and he just hung there on my shoulder. I carried him into his room, his legs dangling past my knee caps and he just sat quietly on the bed as I got his pjs. After trying on three different shirts he looked at me in the eyes and said ” I want up please” so of course I scooped up my 60 pound 7 year old and just held him. I felt the weight of his body in my arms but in a way where he just melted into me, even without saying anything I just knew how he was feeling. Life is different as a non-verbal child, you have to express yourself and needs in different ways. Tonight I read all the cues and we just sat there and he draped his arms around me, tucked his head into my neck and we just quietly sat, I told him it was all going to be ok.

Navigating this sudden upheaval in life is difficult enough as a grown adult who can express my feelings, process whats happening and have my own independence however, I can’g even imagine the struggles Brody is feeling. While we have these outlets and support systems, Brody just has me at the moment. We work on homeschooling and therapy, avoiding regression and curbing self injurious behaviors. Things that he used to love upset him, he spits out chicken nuggets and chocolate milk, humpty dumpty can never be drawn just right and bubbles just arent working out like he wants. I can see the frustration and anger winding him up like a top and watching him you can just tell that he cant express himself. His OCD has been worse, standing up markers in a line, the bathroom fans always on and the foam roller in the corner of the room. He manically draws on a stack of four reams of paper until he gets his drawings just right, every time he makes a mistake he bites his finger and hits his leg, throws away the paper and starts again. Sometimes I just stand and watch him and just feel like I dont know how to help, how to ease this frustration bubbling up in him. I try to put myself in his shoes, unable to communicate and say how hes feeling, having to play cherades through nonverbal cues to get me to understand. While I see and hear people complaining about thier child talking non stop, I wish more than anything he could vocalize whats wrong. I prompt him all day, ” use your words” I say to him, “I…want, what do you want?” I repeat throughout the day. His eyes always dart around the room and he avoids eye contact, he mumbles and his words are all muddled together. Hes trying, he works so hard and Im working hard. We are just doing the best we can.

I bought the laminator and the glue, the construction paper and flashcards. I dove into Pinterest and google, books and YouTube, just trying to get a grasp on what we were walking into. Carrying the weight of all the adult things while parenting a special needs child is catching up to me. What has only been a few months feels like so much longer, nothing could have prepared me for the many things I have felt and dealt with during this quarantine. Routines are non existant and I wonder what Brody thinks is going on. Where are his friends and therapists? The fish at the petstore? Jumping at bounce and splashing at the beach? I can’t even put myself inside his mind to understand how confusing this must be for someone who thrives on structure. While we have struggled at times, there have been many great memories made and progression in unexpected areas. Brody has drawn new things, learned to roller skate and even tried eating brussel sprouts. Together endless puzzles were put together, pizza was made, so much dancing to Baby Shark and oreos for breakfast. While this can be overwhelming at times, I am thankful the health and safety at home and the time we have spent together. I learned that while words are important they are not always needed, these tough times have only made us closer. At the end of the day, after 10 minutes of just sitting quietly, a little tickling and kiss and that little smile was back. I pull the blankets up, tuck him in and kiss him goodnight. His sweet face is peeking out from the blankets as I turn out the light and he says “Goodnight, sleep well. See you in the morning”. Seeing him curled up and sleepy reminds me of how thankful I am that tomorrow we get to wake up and do it all over again.

So here I sit, typing this post and using it as an outlet for my emotions and stress, a bandaid for my achy heart. This was just a peek into our lives and while our situation may be completely different, there are so many feelings and emotions we all share when we lay our heads down at night. The bottom line is that things may be overwhelming, the news is difficult to watch and there are so many unknowns ahead, being compassionate is so important. I ask that you try and remember that you don’t know everyone’s story and understand we are all doing our best to navigate these times. We will get through this, one day at a time.