The Importance of Community

When families look for places to live, finding warm and welcoming communities plays a huge part in the decision making process. It’s often helpful when those communities contain family members and friends as they can help make one feel comfortable where they are.

Children don’t really have a say in the community that they live in. They’re resilient and can typically find their place pretty much anywhere...

… unless they have autism.

Like many people with autism, Hudson has a hard time being away from home. He hates going to school, the store, and pretty much anywhere else that he hasn’t picked. When birthday parties or any other social gathering invitation is received, we usually wait to respond until the last moment. We can’t know how Hudson will feel about going somewhere until the day of.

Home is his sanctuary, and it’s a place where we allow him more freedom in choosing what he does. There are punishments for bad behavior and rules that he must follow, but he works so hard during the school week that we want to give him the time he needs to decompress.

Staying home most weekends and holidays isolates us all from the outside world. For Hudson, he’s ok with that. Finn, Kayla, and I need more. We have to sacrifice our needs to help Hudson feel safe and to avoid major meltdowns.

The past few days have shown me how much Hudson doesn’t realize he needs “community” in his life.

Grandma Sandy

Grandma Sandy is Kayla’s Mom, and she lives 10 minutes away from us. There are only a few people with the availability to come here to see and watch the boys. She happens to be one of them.

She came over on Friday afternoon to watch the boys for a couple hours while I finished work. Kayla had to work her brewery shift after school, leaving minutes after getting home from her day job. Hudson normally prefers isolation from us after school, and Friday had been a triggering day for him. But with Grandma Sandy there, he forgot all about the struggles of the day.

He perked right up and was excited to show her every square inch of the world he’s made for himself at home. Dinosaur toys, video games, you name it. She immersed herself into his community while I recovered from a challenging phone call from the school about his day.

She was a nurse and will admit that she knows very little about autism. And yet she completely saved his day.

On Sunday, Finn had a soccer match. Hudson always protests going, but Kayla and I could not miss out on the game. Grandma Sandy went with us and stayed by Hudson’s side the entire time. And there was not a single meltdown.

The Gills

Alex and Kelsey are dear friends of ours. Kelsey is Hudson’s speech therapist at school. They have busy lives but make time to see the boys at least once or twice a year outside of school. Hudson and Finn adore them and always light up when they are around.

Today was a difficult day for Hudson, followed by another phone call from the school (our third in three days) that left us equally sad and frustrated. We both erupted into tears after hearing how much he struggled at times today. Hudson came off the bus dejected and fearful that I was going to be disappointed in him after today’s events. He disappeared under a blanket in the basement, only surfacing for a snack.

Alex came over tonight to practice songs with me for a gig we’re playing Saturday. He and Kelsey know how much Hudson loves Legos and wanted to get him a special gift. They also made sure that Finn had something equally as special. The moment Alex walked in the door, Hudson’s eyes beamed with happiness. He was grateful for the Lego set and ran upstairs as fast as he could to start working on it.

Our family has several people in our community that care for us. But they all have busy lives… lives without autism. They will read our blogs and comment on our posts, and some will call or text to check in. And we’re grateful for that. But at the same time, personally connecting with Hudson means being in his world, and in his home.

We wish that we could go to the parties and events that we’re invited to. Our lives have become incredibly isolated and controlled by autism. Hudson needed his community these past few days, and we greatly appreciate Grandma Sandy and the Gills for showing up.

Back-To-School Spiraling

Summer break came to and end today, and with it came final preparations for Hudson and Finn to start a new school year tomorrow. This school year is particularly challenging in that Hudson will be moving up to a new school building in the district, making this the first year that they have been in separate buildings since Finn started school three years ago.

Hudson has been dreading going back to school for days. It started subtly, with his sharing memes about how school was a "prison" and the absolute WORST place to be on Earth. We know that going to a new building has triggered some pretty deep anxiety in him, and we've tried our best to mitigate that through summer school (which occurred in the new building) and by meeting with his team a couple of times during summer break. His teacher has a great history with him, having worked with him directly in the past.

His temper has been pretty short these past few days, a sign that his tension levels were rising. Things came to a boiling point this afternoon, and the downward spiral began.

Today was haircut day for the boys and I. And while Hudson typically doesn't enjoy getting his haircut, he usually doesn't put up much of a fight. The plan was to reward the boys with trips to Spirit Halloween and Target if they allowed me to work through the morning and behaved through their haircuts. Hudson became increasingly agitated enroute to the salon, complaining:

"Haircuts and school days take SOOOOOO long. What a waste of my time!"

Spiraling.

He wore a scowl through his haircut and insisted that I not take his picture. His mood improved somewhat as we made the drive to Spirit Halloween. Or so we thought.

When we got to the mall, Spirit Halloween was nowhere to be found. Maps and websites said that the store was open, and we wandered through all corners of the mall to try and find it. When it became apparent that the websites were wrong, and that there was no Spirit Halloween store in town, Hudson erupted into deafening screams and insults towards me that echoed through the walls of the mall. People stared.

More spiraling.

I took a deep breath and tried to re-focus him towards our next stop in the mall, Target. On the way we passed a soft pretzel stand, and I thought that a savory treat could help calm his nerves. But as we approached the counter, we saw that the shelves were bare. The cashier informed us that they needed "15 minutes or so" to prepare a new batch of pretzels, which sent Hudson further into a tailspin.

The spiraling continues.

Mall walks can feel like miles when you've got one kid in meltdown mode and another hopped up on lollipops from the hair salon. We finally reached the toy aisle of Target, and I decided to let the boys pick out toys of equal value in the hopes of providing Hudson some level of comfort. Right away, Finn found something that he had longed for. Hudson needed more time, and I could tell that narrowing down the options between dinosaurs, cars, and Legos was starting to agitate him more. After several minutes, he begrudingly made his choice and we were on our way home.

As we left the parking lot, Hudson continued to spiral further into sadness and anger. He had not gotten the Spirit Halloween experience that he had wanted. He had not gotten his favorite mall snack that he wanted. And he had to choose a toy that fit within a price range that he was not happy with.

Through the tears and angry outbursts, Hudson said something that I was not prepared to hear.

"WHY EVEN EXIST WHEN YOU HAVE AUTISM??"

I'm still tearing up replaying those words in my head several hours later. We have grown accustomed to Hudson's spiraling leading to rants that can last for several minutes to a few hours. In those rants, he expresses sadness and anger about how animals are treated, about dinosaurs being extinct, and about how his autism makes life harder for him. But this was the first time that he's said something about himself that cut me so deeply... questioning why he should be alive. No 8 year old child should ever have those kinds of thoughts enter their minds.

We have tried so hard to speak positively and openly about what autism is and how it impacts his life; the great gifts that it gives him and the things that are a bit harder for him than peers without autism. And the sad part is, there's absolutely no consoling him when he's spiraling. It just takes time and enough redirections for it to pass.

He is always shown unconditional love through the meltdowns, tantrums, and especially during the times when he crosses a line. We are his biggest champions and cheer him on through his victories.

We know that the first day at school will be challenging for him. The first day of summer school was horrendous. Add to it a new school building and a separation from his brother and all he's known during school, and the challenges increase exponentially.

I wish that we could find the right words to say, or the right things to do, when his world spirals out of control. For now, we have to do our best to hide our tears... to hide our own spiraling... from him.

The Stresses of Break Scheduling

Memorial Day weekend is upon us and every year it reminds me that we’re nearing the end of the school year. The summer countdown begins. It’s always exciting to think about the warm weather and all the fun things that summer will hold.

But as I sit here and think of fun things to do this weekend, it reminds me that I become the family planner for all things summer. My children’s daily schedule depends on me until my husband gets off work. And even then, there’s the garden, the yard, or the pool that he tends to. Creating a summer’s worth of daily schedules  is a daunting task when you have a neurodivergent child.

You see, Hudson thrives on structure and a schedule. After a year of planning lessons, the last thing I want to do is plan everyday of my child’s summer, and if Hudson had his way he’d play the PlayStation and swim his summer away. Sounds fine and typical of most kids, sure, but for Hudson this isn’t an ideal structure.

With Finnley, our neurotypical child, it’s a little easier. He loves school so when I offer to enroll him in a summer program he’s all for it and excited (most days) to go. With Hudson it’s a lot harder. He doesn’t enjoy school, so getting him to agree to go is difficult within itself and I certainly don’t want to send him to a place where he’s going to be miserable. Hudson also was granted a 1:1 aide this year and it’s made all the difference. At a summer program he won’t get that, which I feel like it’s something he needs to help navigate social situations.

Last summer I attempted to send Hudson to a weeklong day camp. He was only enrolled for the morning session. He lasted 2.5 hours before I was called to come get him. The camp didn’t have the resources to help him and instead contained him in the nurse’s office until I could come get him. Needless to say, we didn’t return. So, instead I came up with a schedule. We had a daily schedule of working on a school workbook, reading and then we’d do some sort of physical activity, like walking a trail. Usually, in the afternoon we’d go swimming in our pool. I am fortunate to be able to do this with him since I have “summers off” (I say that delicately because as teacher, you know that’s not always the case). I was also fortunate that Finnley attended summer school for 6 weeks, allowing me to put my focus on Hudson. Admittedly, this didn’t last all summer as I found myself getting burnt out and we had some major house issues (which resulted in putting me into an even more burnt out state).

Each year I’ve tried something different to help keep our summers full. The summer after kindergarten I planned playdate after playdate. But I found that to be exhausting for both Hudson and myself. By the end of each playdate I’d find Hudson on the couch with a blanket over his head watching videos on his tablet (his way of decompressing). The summer after first grade I enrolled him in summer school. It wasn’t a disaster but it also wasn’t great, and his teacher recommended giving him a break from school. So, before the day camp disaster of last summer I obsessed over finding camps for him to go to, much to my husband’s hesitation. When the camp didn’t work out I cried the rest of the week.

This summer I’m not putting any crazy plans into motion. Would I love to find a summer camp for him? Absolutely, but close to home options for neurodivergent children, like Hudson, are nonexistent. We do have some plans in place, visiting his new school building for next year, PT skills that I’ve been asked to work on with him, an executive functioning workbook and hopefully a couple play dates thrown in there. And of course hearing 6,373 dinosaur facts everyday.

Not exactly the summer you think of for your child, but we don’t get to have a normal summer like others because nothing in our world is normal.