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

Let me tell you

My eyelids are heavy and my eye is twitching from exhaustion. I am coming down with a cold that I am sure is a result of stress and lack of sleep. Vacation is such an exciting and special thing, I am so thankful that I am able to take one at all considering many aren’t able to. The things we have been doing and the amazing friends and family we have seen during this trip already has made my heart so happy. I love talking to people about our visit and catching up, so many people I have been missing. I have received so much positivity on not only Brody and his journey but my health/fitness progression as well which is so appreciated. It is so flattering to know that people are truly paying attention and care about the daily things going on in your life, especially living 8 hours away and seeing them once a year if I’m lucky. The outpouring of support I have gotten for Brody and just the love I hear in everyones voices while talking about him just leaves me baffled. He is so lucky to have such a cheerleading team behind him, only wanting the best and success in his life. I just wanted to take a minute to say thank you, even little comments and conversations mean more then you will ever know. Your positivity and encouragement give me strength on some days where I am struggling and feeling low.

So now for some real talk. So many people follow up our conversations with something along the lines of “enjoy your vacation, you’re lucky to get time off” or something like that. The thing I’ve learned and come to understand about vacations and time off is that while my day to day activities are different and a lot more fun, there is no vacation from autism. Brody has been great and truly have never seen him as happy as he has been. The thing is with the highest highs comes some low lows. His temper tantrums have been so out of control, his anger and hitting/ kicking is to the point where it is leaving a bruise and his attention span is nonexistent. I love my child through it all of course but as I’m typing this I am a zombie of exhaustion mentally and physically. In between typing this I have probably peeled about 12 crayons and have been redirecting to coloring to avoid a meltdown. None of the things that normally make Brody happy or calm is working today and I am left confused on how to even handle him. I am not sure if he is on sensory overload and just coping with the change of scenery since I am at my moms house now for a while but it is strange to watch his behavior. Donuts are always a go to for a happy kid but instead he sat at the table with ten munchkins in front of him, staring into space with glazed eyes for ten minutes. He didn’t touch a single one and my mom and I watched him, trying to figure out what was going on. I know I have heard and read about kids having seizers where they stop everything and look up and stare off into “space”. I will tell you, one of the hardest things to swallow as Brodys mom is knowing something is off with him, asking whats wrong and trying to figure it out with no response. Times like this I would love to point out to those who tell me I’m lucky he doesn’t talk because “once he starts talking, he won’t stop”. In moments like this I can actually feel my heart ache from not getting a response, I would do anything to hear whats going on in his mind and help him with whatever he is sorting out.

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Now that I have gotten through the autism and sensory specific things I am going to voice something that has irritated me since Brodys diagnosis. I find that I often see “autism parents” saying things like we aren’t just parents, we are “autism parents” or other things indicating we have it so much harder. Ive already blogged about my feelings on the reference of “autism parent”. I could go on about some of the hypocritical posts I’ve seen about wanting to be included but then putting themselves in a category above “typical parents ” but that could be its own blog post for a later day. I am here to say that a parent is a parent and you all have my respect so long as you are actually parenting your child. I also want to say that the same associated with looking on the outside as you do on the inside needs to fall away. Parenting is hard you guys, give yourself some credit. I say this as I am in leggings, a baggy hoodie with a ponytail in and makeup from yesterday looking like a mess. The bags under my eyes are huge and heavy but this morning I threw on some shades and headed out the door to the park. The thing is that I knew Brody typically likes to play on the playground and I was desperate to make him happy because of the off mood he was in. Once we got to the playground he started to stare into space again like at breakfast and had no care for the jungle gym in front of him. My mom and I took a video because of the off behavior and watched him closely. He still didn’t care about it so instead it took off his shoes and brought him to his favorite field. As I’ve already stated several times I am exhausted but Brody can not pass up a chance to run freely and chase me around. I took off, “ready, set” followed off by the smallest and cutest “go!” you’ve ever heard. I ran around and around, he was smiling and enjoying himself and that made it worth it to me. Even if he was only happy for a minute, knowing that I did what i could to make him happy is worth it to me to see that crooked grin.

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Basically I am just trying to get across that a parent is never truly on vacation but I admire those that still bend over backwards and go to any length to make your child happy. Personally, I feel pride in myself that i know I am the parent I’ve hoped to be and am not ashamed to sound like i am boasting about it because its an accomplishment that is far from easy. I am glad I am getting to the point where I am realizing that its ok to not always look your best (my fashion merchandising background had brain washed me into this though process) as long as you are comfortable and happy. There is no shame in these dark circles under my eyes because I got them through long and exhausting hours caring for Brody. I am coming around to self acceptance in a different way then I have ever known in my 27 years on earth. I hope someone took something away from this post, although I had a lot of thoughts on my mind as I wrote this. Hope you were able to follow along somewhat. I just want  you, you exhausted parent, to take your hand and pat yourself on the back because you’re awesome and sometimes we don’t hear it enough verbally.

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I’ll end this post saying that my sweet baby put himself to sleep on the couch as I typed this ten minutes ago and is looking so sweet. I am glad his mind is at rest and am hoping he wakes up feeling less anxiety and stress. I am going to join him now so I can stop being a mom zombie and function since I am surrounded by my amazing family right now.

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Posted in autism

It’s ok to not be ok. 

I know many of you can relate to this topic and it’s one that can be completely consuming, overwhelming and keeps you up at night. I’m an overthinker. I never knew how far my mind could wander, not only to the future but past events too. It’s honestly exhausting. Why do I do this to myself? I honestly have no clue. How can I be fully aware of what I’m doing to myself but can’t stop it? I find comfort knowing that I’m not crazy for what I’m going through but at the same time I feel pressure to act and appear ok. 

I’m not very young anymore, although 27 isn’t that old. It’s old enough where I feel like I should have everything together, however. Parenting is on the forefront of my mind, So many things hang in my head no matter what I’m doing throughout the day. I funnel so much energy and time into parenting that I can feel myself slipping in my personal life. At the end of the day, as I’m staring at the ceiling, wide eyed and unable to sleep I feel my day, year and past washing over me. Sometimes life catches up to you and you’re going through the motions and things get away from you. 

When Brody is tuned out, flapping and bouncing around in his own world and moving his items from place to place I find my mind wandering off. I’ve read enough on the Internet to know that these are normal thoughts for parent and parents of kids with disabilities. I feel an ache in my heart not being able to know what’s going on in his mind, if he feels taken care of, safe, understood. Brody and I have a solid bond and I truly feel in sync with him and he recognizes that which brings me some relief. It is defeating, however, that he hasn’t made much progress in his speech and seems to be platueing in his behaviors. He seems to be navigating his life fairly well, overall happy and enjoying his precious life which makes me happy. The thoughts I think about at night are more of guilt, Brody was a surprise when I got pregnant and I hadn’t planned much ahead although I’ve wanted to be a mother my whole life. I never thought I may have a child with disabilities, all the rest came back negative or physical and mental disabilities. I counted his fingers and toes, delighted when he had ten of each. He was a big baby, chubby cheeks, blue eyes and blonde hair. He was and still is the most amazing child, truly the best gift to my life. Looking back I wish I would have planned better and thought of what I was getting into so maybe I could have been in a better place in my own personal development. Maybe if I had, I wouldn’t be feeling this way. 

I know, I’m being hard on myself. I know, everyone is so kind and telling me I do a good job and many other sweet things. Being hard on myself is ok though, I have a lot to sort through and a lot I need to accomplish to get to a place where these things aren’t as loud in my head. Now here’s where I’ll wrap it up and tie it all back in. The beautiful thing about having a child is the lessons they teach you without even knowing it. I see myself in Brody both with his personality and looks and it’s just the most surreal feeling. When I was young and even now, I don’t fit in. I’m different and my parents raised me to be ok with it and showed me that’s what makes life interesting and beautiful. Brody and I share this in different ways and I’m glad we have this in common. 

Brody gets overwhelmed with his anxiety, will have a group of objects he takes from place to place and lines up or arranges the same way every time. Most recently his objects are a medicine ball, a rocking horse, crayons, a few pirate ship toys, blues clues stuffed animals and a broom. They go from his teepee tent, to the dining room table, to outside by his pool, to my gazebo then inside to the coffee table several times a day. He does this, lines up his chicken nuggets in one line, fries in a separate line and places the jug of milk directly behind his soppy cup. He does it to have control over it because he feels so out of control of other things. He can completely have control over these specific things and it brings him comfort when he stands back and sees them all together and lined up. This is what struck me and I should be applying to my life. I need to take small portions of my life I do have control over and feel comfortable with these accomplishments. Whether it’s cleaning, parenting,  physical/ mental health or the relationships I have with others I need to step back and take comfort in where I’m at in those areas. 

Break things down, one chunk at a time. Make a check list, see how far you’ve come and use that as motivation to keep going. Make sure you focus and keep it real with yourself, where you need work and also where you’ve come from compared to where you are now. At the end of the day it’s ok to not be ok. I feel like that’s not said enough. As long as you keep pushing through and work on your self betterment then that’s enough. This is what I need to remind myself , I’ll be using this post for myself when it’s needed and I hope it relates and helps one of my readers.