The Exhale

The house is quiet and the sun is setting after the first stirrings began fourteen hours ago. It was a full day with much of it spent outside. I love the warmer temperatures and front garden bed full of weeds. Signs that spring is here, and with it comes the trading of bikes by the three and under crowd and the trading of Pokemon cards on the grass by the older crowd. Throw in snacks and random bursts of tears and you've got happy cul-de-sac mamas sneaking in conversation and living life together in those hours after school but before dinner.

Today is also Autism Awareness Day.  In between getting snacks and giving cuddles, checking out new stacks of books and then reading said books, I was going back and forth about what to say, if anything at all. I tend to wonder where I fit in in many areas of life, and this place is no exception.

Autism is confusing because it is a spectrum and can't be put into a box. I think that's what can also make it uncomfortable. It's satisfying to put things in boxes just so. 

Tetris, anyone? 

I remember waiting for weeks for our assessment and daily telling B that my fear was that they would wonder why we were even there. Our normal was so normal to me. I remember sitting across from a doctor as she handed us a huge packet of papers and told us our boy had Autism Spectrum Disorder, briefly talked through the assessment and then asked if we had any questions. I felt confused about the diagnosis and didn't fully trust it. I remember eating at Penn Station with our boy before taking him back to school that day, knowing he was the same boy as he was before we got the big packet of papers, but also knowing how we moved forward was up to us.

It's been a year and I can now say that I think we are slowly finding our footing.  

There's a phrase about not realizing you are holding your breath until you exhale, and we experienced that exhale a few months ago as we were looking into a center that was specifically for kids on the spectrum. As we were waiting, our boy was doing his usual scope of a new place, touching things, not sitting still, randomly wandering with a goofy grin that lets us know he has no idea what to think, and all of the other subtle things we stand on guard for on the daily. There was another mom and her son waiting for their turn, the son loudly saying hello and asking us who we were. B and I smiled and told him our names. We didn't feel like we quite belonged, and we felt like we totally belonged. And though we chose to explore a different avenue, that feeling will always stick with me.

The exhale. 

It felt so good being in a place where we could let our guard down without the need to explain ourselves or our boy. That is the feeling I long to pass on to other people, and the feeling I desire to create by sharing our story. 

So whether you are lighting it up blue, celebrating neurodiversity, waiting for a diagnosis, or just feeling plain lost after asking for help over and over only to be told you just don't make the mark, know you are not alone. 

I will see you. I will walk your journey with you. 

And I will do my best to give you the gift of the exhale. 

   

Quiet Time Realities

The worst thing for my middle buddy is to be sent to his room for quiet time. He doesn't like to be alone.

He comes by it honestly. I may or may not just go stand in B's work-from-home office at random times throughout the day.

Yesterday he sat with me creating while I did some reading. What originally started as a paper sword was folded and glued before he asked me to draw a heart. He cleverly drew the two "M"s and told me I could use it as a bookmark.

Into my Bible the bookmark went and he went on to craft something else while I finished up. He's coming a long way with his independent play...as long as he's not made to truly be alone.

Today my middle buddy chose to play in the basement...still very much in view of me so he can make sure I'm genuinely doing work instead of wasting precious time we could be playing together. He still doesn't quite get that the point of quiet time is for ME everyone to get some time alone. I opened my Bible and took the handmade bookmark out. I reached for my trusty yellow crayon and decided to snap a picture as I smiled and laughed to myself. Not because I'm a trendy Instagram photographer, but because I am NOT.

Oh, I day dream about being a person who fills up my journaling Bible with paint and pretty tape, with creative hand lettering and fun textures, but right now my reality is Crayola twistables -that are actually perfect for coloring over words while still being able to read them- and playing roulette with the colored pencils left over from Kale's kindergarten year. There may be a certain color you're hoping for, but there's a 50/50 chance whether it will be usable. 

I write this only to say that there is so much freedom in embracing your actual self instead of waiting for your fantasy self to appear. That's not to say you can't grow or change, but I really believe that growth and change can only happen if you allow yourself to be where you truly are in this current moment. 

My current moment looks like sharing art supplies with my boys as we both create and grow in our own ways. And it's exactly where I want to be. 

When Routines Change

It's the first afternoon of our four day weekend. The first grader and the preschooler both have Friday and Monday off meaning lazy days and lots of time together. The morning flew by with our daily game of Ticket to Ride then hours of free play. I'm learning to enjoy sitting on the floor and watching the different ways our boys play.

Our littlest has such an imagination and can make anything into a toy. He knows how to entertain himself for long periods of time, though he is recently realizing that mom playing is an option and prefers that.

Our middle guy jumps from thing to thing making up trick shots and climbing on things. He is a magnet to me and usually manages to find a way to play while cuddling. It's a skill he proudly owns.

Our oldest is usually found making his loop around the couch throwing his football, lost in an intense game. If he's taking a break from that it's to reenact levels from a video game, and any sibling involvement is tightly managed to fulfill whatever idea he has in his mind.

It's such a gift that I can look back on the day so far and see that it has been good! That electronics weren't asked for until the agreed upon Smash Bros at 1:30 and our trip to the library didn't happen because boys didn't want to leave the house. That free play carried on in various forms all morning and I was able to step in and help it along and then step back and watch it take its own shape.  

I am learning to embrace the truth that even the good is exhausting! That is a difficult concept to grasp or even explain to someone else. I know that most people can understand it to a certain degree, but for us there is a need to be always on. To enjoy a moment while at the same time mentally preparing for the unseen trigger that will begin a meltdown. That was a mindset I fully embraced when we first started out with babies and had two toddlers, but I knew it wouldn't be like that forever. I knew that kids slowly grow out of needing constant supervision. 

Unless they don't.

What happens when your already structured and scheduled family needs the schedule even more structured and scheduled in order for one of the members to thrive? 

The excited thoughts of no school began to fade when the reality of a day at home that wasn't the weekend sunk in. We're not having pancakes because it's not Saturday. It feels like a Saturday but dad is working. Those were not spoken, but I can imagine they were muddling up a confused brain that needed to make sense of what this day would be.

A list was enthusiastically made (because I make a list for him every day after school), and I saw him breathe a little easier.

His bucket of things only for him along with his things that don't go in the bucket were brought downstairs to mark his space. "This is my bench and no one can touch any of these things in my spot!"

Rules and boundaries made by himself. Breathing even easier.

Watching big brother bring his things down from his room led middle brother to follow suit. I could only stand back and think, "No! You don't need to do this like your brother does!" But I said nothing and let it happen. Because middle brother does need to do it. He is figuring out his world, too, and that means copying behaviors and coping strategies until he realizes on his own that he doesn't need them the way his brother does.

I sent these words to my sister...

Autism is in high gear over here today. How can he be in his own world while simultaneously taking over ours?

She told me that sounded like a post. Maybe this is the post. Or maybe I still have words to unpack from that question. Either way we are navigating the muddy waters of the spectrum and realizing how wide of a spectrum it is and that the quote really is true...

 When you meet a child with autism. You have met one child with autism.

I am also smiling and taking in the sounds of a napping little and laughing bigs as they enjoy their screen time together.

It has been a great start to this four day weekend. 

2018

It's the last day of 2018. The rain outside has given us the perfect reason to stay tucked inside and the traveling we did over Christmas means our house feels extra comforting.

I'm anticipating my sister's word for the year which has me reflecting on our year and what word I would choose for the upcoming year.

This past year was a year of firsts, and I'm only now realizing what a shock it was to my system. Definitely not all in a negative way! I just greatly underestimated how much change can affect a person until I was in a puddle of tears on the anniversary of our move missing the floor of my friends houses in Boston.

It was the first full year in our new state/house/neighborhood/community. 

It was our first experience with public school. 

It was our first experience with preschool.

It was our first time in a neighborhood where kids can freely ride bikes, explore, and live at the pool in the summer. 

It was our first year actively seeking help and it was a year of letting the words autism spectrum disorder soak in.

It was our first year living with family a walk away.

It was our first time with a two year old and no baby.

It was our first time away from our kids for more than one night.

It was our first Christmas Day in a hotel.

This past year was a year of slowly loosening my tight grip on so many things. It was a year of slowly finding my words again, with the help of my sister who always chooses a word. It was a year of letting go of how I thought things should look so I can embrace how they actually do. It was a year of double date nights and laughter and lots of TV shows with our nephew. It was a year of Saturday pancakes and Sunday dinners. It was a year of wearing dents into the pavement on the walk to and from school and lots of quick heart to hearts with new mom friends.

This year was so necessary and sweet, but I am looking to next year excitement and anticipation for what it will bring!

Oh Santa

When you spend your childhood proclaiming you won't be going to the mall anymore as soon as the Thanksgiving meal has come to an end, and when the grownups who find themselves with you at the mall some time after that are skilled in scoping out each store and planning their moves based on where the big red suit won't be, it's pretty safe to say Santa will be a no go in your house.

Santa was so unnatural for me that I wouldn't even know where to begin with "doing Santa". But that phrase comes up so much around this time of year!

"Do you guys do Santa?"

"Does your family do Santa?"

"What did your kids ask Santa for this year?"

You can feel the wet blanket being thrown over the fire as soon as you say, "I was terrified of Santa growing up, and I'm still not sure how I feel about him!"

I remember leaving cookies and milk out a few times on Christmas Eve, knowing my dad would be the one to partake. I was very quick to tell people that "Santa doesn't bring me presents, my daddy does!" And I remember getting a Where is Waldo book from Santa one year with my mom's signature curly haired smile beside the name.

My main Christmas memories include the log my dad drilled holes into for our advent candles, wanting to be the one who got to snuff those candles out, singing songs, and putting the felt ornament on our tree, making sure the stump stayed clear for the manger. I also know that our presents were opened with family on Christmas Eve and I went to bed with an empty stocking and woke up with it full on Christmas day!

It may have been different for the ones who came before me but, from my memory, Santa was neither talked about nor hidden away.

Fast forward to a marriage and three kids later!

Christmas presents slowly changed to Christmas morning, and stockings are still empty the night before to be seen full in the morning. Our felt tree is on display all season long with the ornaments on and off in various combinations. Advent chocolate calendars to follow our Advent reading are a favorite, and I still have hopes for candles to join this tradition....maybe next year!

Enter Santa.

This year has been the first year Santa talk has been continuing to come up, and last night we had a full twenty minute conversation about him in the car.

To set the scene we had just left a drive through Christmas light display. Our magical middle child in the very back, our logical oldest child in front of him along with our passionate third child angrily telling me "that wasn't a surprise" then forgetting he was angry and asking for cookies.

T - Mom, I just saw Santa! He was sitting in a chair.
K - Is Santa real? Kids in my class always say he's real. I keep telling them he isn't.
T - I wish I could see Santa.
K - Is Santa dead? 

I tried to explain about how there was a person named Saint Nick and that's where Santa came from but that nobody actually comes through the chimney to bring presents. I affirmed Thomas' desire to see Santa and let him know we might see him somewhere else. (I left out the part that we could have gone inside at the Christmas lights and seen Santa. That would have involved getting shoes on and dealing with three kids and Santa without Dada.) I let Kale know it wasn't his job to make sure other kids knew the facts about Santa, that some parents like to play that game with their kids and they can share the facts about Santa when they are ready, and to please not go around telling people Santa is dead.

K - So Mom, someone could just sleep by the fireplace on Christmas Eve and if they don't hear anything then they would know Santa is not real.

"Yes, Kale, that could be one way. But also we know it's just a pretend thing and that no one comes down the chimney." I then told them about how I left cookies out a few times when I was younger just for fun, but I knew they were for my dad.

T - Oh, I want to do that! I want to leave cookies and milk out! Let's do that tonight!

K - So Mom, someone could just leave cookies out and then if they are still there in the morning they would know Santa is not real. Also, why does Santa like rotten milk? You should never leave milk out all night because it would be rotten.

So here I am in the car with one child who loves all things sparkly, magical, and outside any rules of confinement, another child who fixates on topics and needs to make sense of everything in his world, and another child who just wants a cookie.

Where am I going with all of this? Well, I think it's safe to say that conversations like these are what make my brain feel exhausted by the end of the day! Our kids know the reason we celebrate Christmas is because God gave us the perfect gift by sending his only son to earth as a baby. I think where I'm going with this is that kids are so different! And that while I desire blanket answers to cover all three of them when their minds start spinning and asking questions, it just doesn't work that way.

Our oldest needs all of the facts and to know how everything is going to work before he can relax and have fun. Our middle guy wants us to dream and imagine and think way outside the box with him. And our youngest just wants a cookie.









 

Three Words

high functioning, low functioning 

Everything seems to need a category.
But what help are those categories, really, when reality is more fluid and complex? 

 "He doesn't act that way at school/for me/when you aren't around."
A sweet boy who works so hard to hold it all together when he needs to most.

Hands over ears with hot tears rolling down cheeks. The feeling of hunger is too much when the looks and smells being presented to you are too much.

The sweetest postcard with good intentions arrives in the mail reminding us that this week Awana has a theme and it is Light up the World Glow Night. That's different. Nothing is spoken until it's almost time to leave the house.  

Hands over ears and loud screams eventually settle as safe arms cradle him on the kitchen floor speaking words that identify feelings he doesn't have words for...like scared or nervous. We don't have a manual on how to do this. We get shoes on and make it to the car.

He waits in the hall as I walk through the maze of kids in the gym to find his leader. Her confusion as to why he is reluctant to join the group this week along with my seemingly random questioning about what the schedule would be for the evening leads me to utter three words I keep close to my heart.

"He has autism so he doesn't handle the feeling that something is going to be different."

My words are received with a sweet smile and understanding. I exit the gym and find two chairs to sit with my boy, letting him know I won't make him go in and I won't leave. 

Time. It just takes some extra time. He sees me fidgeting with his vest that just came in that day. He asks if he can wear it in a language that comes out when he's feeling small and the world is feeling big. "My wear vest?" 

He motions to me then points upward towards the gym, signaling to me that he wants me to walk him to his class. We make our way to his room and he gives me a hug and walks in with a smile. Then gives me a wave that says he's OK if I leave.

When I go back to pick him up the report is glowing, as always. "He did such a great job!"

He tells me that it was super ultra mega fun and we get in the car with our other little friend and go on a Christmas light hunt on the way home. He proudly shows his dad his vest and new badge and is just beaming with happiness. (Though he is not going back in two weeks when it's store night. What even is store night?) His dad and I smile at each other through tired eyes with a smile that says we're in this together. Because we are. And it is hard.
And it is beautiful. 

 

Forever Scrambling on Halloween

When I think about my childhood I can think about a handful of holiday traditions...

• Family meals were always at 4pm.
• Kenny Rogers "The Gift" would be playing the day after Thanksgiving as Christmas decorations were put up. 
• Real eggs were hidden to find on Easter morning... or maybe that was one specific time that sticks out to me.  When I came into the room to find my brother's basket heaping with eggs because he found them ALL.  I think my parents made him hide some for me to find.  And I remember one egg was on top of a wooden CD rack and when I went to grab it it plunked its way to the bottom and was all cracked.  That was the chosen first egg for the many sliced egg on toasts.
• Advent candles, felt tree, Bible reading, and songs would happen every evening.
• Christmas presents were opened on Christmas Eve and stockings were emptied Christmas morning. Which worked well while B and I were dating because we could spend Christmas with both families.  It didn't work so well for the "how are we going to compromise" conversations leading up to marriage.  Through some digging I found out that the "Christmas on Christmas Eve" tradition began when my older sibs started having their own families.  I now open presents on Christmas morning.

When it came to Halloween, or even decorating Easter eggs, it was child led.  My brother would carve pumpkins with me, and my parents would get candy to pass out.  We would sometimes go to my Grammy's house.  We never went out shopping for a costume... I don't even think we talked about costumes.  My memories are of getting invited to go trick-or-treating with friends and raiding my mom's closet for things to use as a costume.  One year I went as a clown in one of her flowing skirts and a floppy hat.  We did have face paint so I feel like there must have been some preparation.  One year I was a teacher, again in a flowing skirt with a clip board in hand.  One year I was a gingerbread person in a musical so I stayed home to pass out candy in my gingerbread outfit my mom sewed... Mom, did you sew it or did we just decorate it?  That brings to memory the time I was Mary for our school nativity and I needed to decorate my traced body.  It was the night before and my parents were helping me tear up and glue an old bed sheet to my person.  

I digress.

This explains why I'm forever not planning anything for myself for Halloween and then find myself cutting cardboard for an eye patch and sewing leftover Superman cape scraps together for a red sash.  It's why B just smiles as he walks in the door to hear, "I'm a pirate!"  Because he's used to it.  One year he came home to me pinning socks to my clothes and tying a dryer ball in my hair.  

Because I don't really care about certain holidays themselves.  It's the spirit of fun and togetherness, and the act of creating something together, like with my mom when I was younger or with my helpers now, that finds me scrambling on Halloween, and I wouldn't have it any other way.