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.

Posted in autism

I spy, with my little eyes.

What do you see, Brody?

What do you see when you wake up early every day, getting yourself ready for therapy? While the other kids play and celebrate being free of a classroom, enjoying their time how they want while you work so hard daily to learn life skills that come so naturally to most. You may see an exhausted mom behind the wheel driving you but I hope you see the admiration I feel for you. I hope what you don’t see is the pain in my eyes leaving you every day, how I want to be home with you and able to have the energy to do all the things you want to. I hope you don’t see the worry and the heartbreak, the stress and the overflowing of emotions I feel on a daily basis. What I hope you do see is a mom trying her hardest to be strong, who sacrifices and gladly puts you at the forefront of her mind. What I do want you to see is the way my face lights up when I see you, my open arms and the happiness I feel as soon as I’m around you. I know you’re always watching and I am trying my best to be the mother and role model you need.

What do you think? What do you think when hour therapist tells me she counted over 160 whines in just one day from you. Over 160 thoughts and things you wanted to say but couldn’t express, trapped inside of of your amazing mind. You squint and daze off, you can actually see the wheels turning in your brain that it actually sounds loud to me. I try to get in your mind, I feel like I know what you think most of the time but I always find myself wondering if it’s right or just wishful thinking. I know you see sounds and hear colors, smell and feel things most couldn’t imagine and I find myself always longing to know what you were thinking. Is your brain as tired yet in overdrive like mine? I see your mind racing along with your body then suddenly you’re asleep and your body is so still. Let your mind and body rest, I hope you are thinking about nothing at all and your mind is slowly wandering free.

What do you hear? We walk out the door and your hands are immediately over your ears… those birds are singing again. Do you hear the truth in my voice when I hug you goodbye and tell you I’ll miss you? When I tell you I love you and I hope you have a great day, I’ve never meant anything more. I know you hear me say you’re a good boy because you tell anyone who will listen and no one argues it. You’re the best boy. You are the best, even when you’re at your worst. Do you hear your whines and cries, the sharp inhale from your mom when you hit your head and head butt your knee out of frustration. I know you are overwhelmed and I hope through the frustration and exhaustion I feel at times, you hear the patience I try to practice and the last ounce of energy I put into trying to be there for you. Sitting on your bed and brushing your bangs to the side while you sleep, I tell you how you’re just the most brave and amazing person I’ve ever known. I tell you how everything I do is for you and us, how I’ll be glad to have you to care for no matter your age and needs. Someday we will have the life we have always dreamed and how we will make it through the hard times, no matter how hard. Please let the things I say sink in and be daily thoughts for you. I hope you hear me.

Looking at you, your legs are gangly, you are missing two bottom teeth, have a stylish haircut and the words are flowing more freely from you. It’s like I hardly recognize you with the changes in the past year yet your personality and individuality has only grown stronger. I look forward to the day we can talk about what you see, think and feel, I want to see into your amazing autistic mind but for now I am content with these simple unspoken moments.

Posted in autism

Count momula

How many nights have I locked my doors, all three, making sure we are safe inside. One click, two click, thee. Picking up two plates and two cups, dumping milk and chicken nuggets…two more nuggets and some fries wasted. All I see is money down the drain. Three rows of 48 crayons are on my floor, nightly I transfer them back to their boxes like he likes. At least a dozen sheets of paper are scattered around with pigs, wolves and jars of tomato sauce precisely drawn. I find it hard to throw them away but I know there will be hundreds more to follow. The lights and fans go off, 9 switches. There was a rave in my house today, Brody’s fingerprints are all over the wall where he flips them on and off all day long. I go to his room and turn off the fish light he loves so much, put the book in his hand back for the 15th time. Finally the bedtime routine has caught on.

Two and half hours. That’s how long I’ve had of me time since he’s been asleep. You’d think me time would be relaxing but how can I relax when all I do is count in my head. I have two cartons of milk left, 3 days until my cell phone is due, four days until the weekend and countless nights of worry and stress. I do count my blessings, it isn’t all bad things. I have one mom, one Dad, two sisters and an uncle. I have a few people who have entered into my life and become family. I have a car, a condo and food to eat. I have more friends now then I ever have before. I have an incredible and special son who looks half like me. Life is hard and amazing at the same time.

I’m 1,2600 miles away from things that I love and where my heart broke. 1,359 miles away is my family I love and miss. 1,426 miles from the house that is my home, from the town that shaped me and started building me to be who I am now. It’s been 8 months since I moved and 13 months since I chose my own ending rather then going down the same wrong way Road. It’s been 7 years since I’ve been just me but it feels like forever. There’s no number for the meals I’ve made myself, the trips to the grocery store, diapers I’ve changed, loads of laundry done, times I’ve drank some wine just to help my heart go numb a little. How many times have I stared at this fan going around, struggling to close my eyes just to wake up and do this over again and resume the counting.

Silence is deafening was a saying that never rang true to me until I was alone. Tonight it’s so quiet it’s almost like there’s a ringing in my ears. I always think how many friends and family feel or have felt how I feel, how many people are laying in bed right now doing their own counting. When the counting gets too loud I try focus on keeping my eyes forward. To put one foot in front of the other and keep going, to not let it bog me down.

Yes I’m counting my balance in my bank account but I’m trying to remember that someday I’ll look back and not have to count. I’ll be able to remember how it was, how I made it work with some help and sacrifices. I’ll be understanding that others are fighting that battle and be compassionate and helpful when I can. I’m counting how many job postings and applications I’ve read over and the hours spent trying to find a job that fits. Someday I’ll have a career that makes me happy and helps support Brody and I. I’ll feel proud of where I’ve gotten and the steps I’ve taken to get there. I’m counting the hours spent inside, watching paw patrol, drawing bricks and a wolf, Blowing bubbles and cleaning up after a potty training boy. I’ll also count while I cherish the kisses, the words my nonverbal child spoke, the milestones hit and the bedtime stories and tuck-ins I give Brody, just like I remember from being a kid.

The loudest counting in my head is my age. I’m 29. 12 years ago I graduated high school, 8 years ago was college, almost five ago I added mom to my list. I still have so many years to add onto my age, so many not counted yet. I have no idea what those years hold but hopefully I can add on more children, a husband, more friends and family and many amazing adventures with Brody. This is what I dream about when I close my eyes, it’s what fuels me to open my eyes for the 10,340th time.

Posted in autism

As I am…

Life knew what it was doing when it sent Brody to me. It was teaching me a lesson I just couldn’t see.

Autism came in with one foul swoop, forcing me to dump all my cards and regroup.

This came in and turned our world on its axis, what I didn’t know was that this was my practice.

Patience and kindness, understanding and love, I hope we are making our family proud up above.

His story inspires others, he’s teaching lessons just by being, he’s got a team of cheerleaders who can’t believe what they are seeing.

The progress he’s made and the changes occurring, you can see in his eyes that his minds constantly stirring.

He’s fearless and different, unapologetically unique, the next thing he will conquer is learning to speak.

When his feet hit the sand and he swims like an otter, he finds peace in his mind when he’s in the saltwater.

As the sun sets, all I can see is his silhouette, I’m snapping mental pictures, thankful for the time we have left.

Different not less, is what they all say, Bonita beach is where Brodys autism washes away.

I have no idea what our future has in store, what I do know is I was meant to be his mother for sure.

He’s the non verbal one, yet he leaves me without words, growing each day is something we’re always working towards.

So thank you to life for sending me this blue eyes baby, I think in the end he’s the one who really saved me.

Posted in autism

I’m trying but I’m tired…

I’m laying next to you in my big bed. You have a cold and you’re sniffling, you’re watching paw patrol for the millionth time on your kindle and dozing off. We just wrestled while I had to hold you down to give you medicine, you cried and spit it all up and I feel like a mean mom. I hate seeing you upset but while you’re the non verbal one, I wish you could read my mind like I can read yours.

I wish you knew the daily thoughts I have about your future, that everything I say and do is for you. I always wonder if I’ll be a soccer mom one day, if you’ll be singing in a Christmas concert at school like my friends kids are. I think further down the road, if you’ll go on to go to college or have a career, if you’ll live on your own, if you’ll meet someone special someday and create a family. I wonder how being a single mom will influence you and how you grow up, I worry it will hurt you somehow. I try so hard to be both roles for you but I’m only one person. My minds tired, Brody.

I wish sometimes you can could see how much of my mind you consume but glad you don’t see the other part of my mind. This year has brought some internal battles for me, I’ve had to be out of my comfort zone a lot. I’ve had to fake being strong for you and force a smile, I’ve hidden when I cried. I’m trying to heal my heart while being there for you, trying to see not just your future but mine. No one teaches you how to parent when you’re feeling broken, I just wake up and try each morning and chip away at it. You’re not a burden but my biggest blessing, Brody. You’re my consistent when most other things aren’t.

My body’s tired Brody. I pick up millions of crayons a day, Reese’s wrappers are shredded all over the house. My hands are sore from filling out your paperwork, my eyes are strained from emailing and constant researching on my tiny phone. I swear my left eye is going to twitch until the day I die, the bags under my eyes are getting darker every day. My body runs on coffee and creamer, I get sleep thanks to melatonin now. You’re 42 lbs and can’t walk far, I’m always carrying you on my hip, having to use both arms to support you. My body aches and cracks like I’ve never heard before and I feel older then I am. Potty training is the bane of my existence, the laundry I’ve been doing is solely supporting the power company. I drive you to doctors appointments, soon school and therapy, swim lessons, the store for bubbles and crayons. My body doesn’t stop but when it does, it still feels like it’s moving. If it’s not moving a million miles a minute, my mind is. All of this but I still bring you to see Santa and goats at the farm. We go to the beach and watch sunsets, I take photos of you even though I’ll never forget those memories. We swing at the playground while kids say you’re too big for the “baby swings”, they don’t know you can’t support yourself on the big swings. You spin in circles in front of the playground while the other kids play around you. They try to ask your name and get upset and ask me why you don’t talk. I tell them you don’t know how yet, “We are learning” I tell them. This makes my heart hurt too.

My heart hurts because others don’t understand you, and it hurts more because I don’t either. I see you slip into Autism land, which may seem awful to some but you’d know what I meant if you saw what I did. A little boy in a pile of blankets and pillows he has stripped off the beds, all on top of him with his head poking out. His eyes are open but no ones home, it’s like Brody’s left and watching him is difficult because his disability kind of reaches out and slaps me. I’m then faced with the fact I don’t know so much about my son, even doctors and therapists don’t. Guilt doesn’t creep in often but when it does it’s consuming. I always wonder if I did something wrong, if it’s my fault you have autism. It’s times like that I can actually feel my heart hurting, the worst pain of all.

I am tired Brody, and I’m sure deep down you know. You are so smart it stops me in my tracks sometimes, you know and understand way more then any of us realize. If you see that I hope you know that it won’t always be like this. Some of the things will get harder, some will get easier, some are just a phase we will work through together. Christmas and holidays seem to be extra hard on me, I try hard not to compare our situation to others. You aren’t writing a list to Santa, you don’t know what Christmas is, I don’t have extra money to buy you gifts this year. But you know what? This year you sat on Santa’s lap and you said his name while looking him in the eyes. You know how to unwrap gifts this year from amazing friends and family who love and care about you, who are your biggest fans and our amazing support system. You’ll go to sleep in your own awesome new bed, in your brand new room in our own condo. You’ll wake up to our cute tree that you helped me decorate and see the cookies Santa ate that you helped me decorate. All of these things I couldn’t say last year but I can today. And that, that’s enough to get me through because although a day in our life is more work then some, it’s worth it in the end. So here’s to a year of progress and another day of trying our hardest to be better. Every days goal is moving forward from where we were yesterday, no matter how small the step. Moms tired Brody, but I look forward to every day with you.

Posted in Believing in Brody

But why?

Real talk time. I am someone who will research for days before making a purchase or making a decision. I want as much information as possible before making any moves. I will pour over reviews, blogs, websites and I will post asking for opinions and personal experiences. Autism has proven to be my most challenging topic in my life because there are no definitive answers. I have never had a question or asked why and not gotten an answer and every day this has gotten more challenging for me to accept. I just want to know why. 

Brody is nonverbal,  doesn’t sign and has yet to take to the pec system. I feel like my minds a hamster on a wheel all day, always trying to be in his mind, thinking ahead and attempting to guide and help Brody by using my instincts to figure out what he wants. I am so into expressing feelings and while Brody can’t verbally express his feelings, I still make sure to tell him mine. The great thing is that I feel more in tune with him and feel like we move in sync sometimes. While we do have times where he doesn’t listen, I feel so in tune with him and the connection we have really melts my heart. 

I think a challenge I face is that Brody and I deal with a lot behind the scenes that most people don’t see. Being so in tune with him can be exhausting,  even the slightest change in his demeanor can mean something significant. Today is what sparked this post because it’s a perfect example of what I mean. Brody had a great day, well behaved for him, being social and having lots of activity. I slowly noticed towards the end of the day he started spacing out and just not quite acting like himself 100% although barely noticable to those who aren’t always around him. When we got back to his room he laid right down in bed and was acting stuff and almost frozen in a fetal position. While this doesn’t happen on a regular basis, I know that he most likely had sensory overload from the day’s activities and needed some compression. He likes the hang around my neck like a koala, our foreheads touching, my hand around his legs so they are tucked in and my body weight slightly on him. I’ve tried blankets, sheets and several other things to solve this feeling but this seems to be the most effective way to help and I don’t mind. It’s actually flattering that I can be such a relief and a comfort to him and I can’t help but take in this cuddling time. He typically doesn’t like to be touched and cuddled so I try to enjoy moments like this. 

While I am aware that there are some answers and that there’s new information coming out all the time about autism and sensory processing disorders I’m always wanting to know more. I wish I knew why these things happen, what goes on in his mind, how it feels and what he wants. Most of the time I feel like I pretty much have it down how to help but I always wonder if there’s more I can do. I’m sure I’m not alone in this feeling, if your child has autism or not, you just want want to help your kid as much as possible. Parenting is such a learning process day to day, it has taught me a lot in ways I never had imagined. I’m constantly amazed that such a little human is teaching me so much unintentionally just by being himself. 

I hope that eventually we can get some difinitive answers about the causes of autism and that with it comes some ease for parents. I know there’s nothing I can do but take things day by day and I wish I could switch that thought off in my head but it’s just not that easy. Why seems to be a question always hanging in the air but every day I am just learning pieces of the answer just but observing and using process of elimination. I am so thankful to have an amazing child and my love for him just grows every day. Now is time for me to switch my brain off for a bit, although he is twitching more then usual he seems to be in a deep sleep. Goodnight all…