Exhausted and Adrift...

It's been nearly a month since we last posted, which is far too long for an update on where we are.

So, where exactly are we?? We are exhausted... and adrift at times. We are struggling with balancing our jobs, Hudson's school work, his therapy sessions, and keeping Daredevil Finnley from seriously injuring himself every other minute. Oh, and then there was the pool liner that we had to replace, the truck breaking down, and the realization that eating Pop Tarts and ice cream everyday is taking its toll on our bodies. At this point I think "COVID-19" stands for more than just this terrible pandemic; it's also the approximate amount of weight one can expect to gain while spending 3 months under quarantine.

We aren't sleeping well most nights. Hudson is having night terrors almost daily, and comes running into our room several times each night. It was cute at first, but after the 4th night you realize how small a queen mattress is when you add two parents, two cats, and a giant four-year-old who thrashes and kicks in his sleep.

The world is a crazy place these days. We are forever grateful to live in a rural community that doesn't participate in the violent looting and protesting that is spreading everywhere. America is facing one sad pandemic after another it seems, and we're all just treading water... catching our breath when we can before we are hit again.

The hours, days, and weeks are all turbulent waves crashing around us. Some days we float better than others.

A Punch To The Gut

Once upon a time, I thought Hudson was so highly-functional that being on the Spectrum didn't seem real. One of the local special services coordinators even asked if we wanted to have him retested to perhaps obtain a different diagnosis. We knew better than that, though, and had decided that we were NOT going through the testing process all over again. Hudson is very verbal and extremely bright, and he can handle himself without a meltdown for a good chunk of time. I used to think that he might only just barely be on the Spectrum. I don’t think like that very much anymore, but when I did, he would always find a way to remind us. And that reminder felt like a "punch to the gut" every time. And it still does today.

The realization hits the hardest usually when I am (or was, thanks to COVID) surrounded by children who are all his age. I see the way they act and know that my son does not/cannot do some of the things that they can. The first time my eyes were really opened to it was when I took Hudson to a music program at the library. All the other kids were dancing, singing, and following directions. Hudson was, too, but I could tell it was harder for him than the other kids. While they were all singing the song that was being instructed, my child was jumping and singing an entirely different song that he knew (“Wheels on the Bus”) at the top of his lungs.

Birthday parties are also another big smack in the face for me. Truthfully, I have a "love/hate" relationship with them. I’m beyond happy when Hudson is invited because I worry that his “weirdness” will keep him from having friends. But I also shudder a little bit when we get an invite because I know watching other kids getting gifts, or waiting to do certain activities, can trigger a meltdown.

This past summer, Hudson was invited to a birthday party, the first one where it wasn’t a family member (or a friend who is like family). It was at a playground nearby so I knew I could take him home if things got bad. He only *almost* melted down just once, waiting in line to hit a pinata. The thing that bothered me the most, though, was watching him isolate himself on the playground while all the other kids ran around and played together. I also noticed another kid climbing the monkey bars. This little boy was just a few days younger than Hudson. It pained me to watch because there was no way Hudson could do that if he tried. A small fact that you may not know about Autism is that some people who are diagnosed have low muscle tone and it’s harder for them to do physical things, like climbing or jumping. My child has literally been learning how to simply jump for over a year now.

Since we’ve been quarantined (nearly two months now) our eyes have been opened a little bit more to Hudson’s Autism. He just recently started doing teletherapy, five times per week. Since we can’t be at school or see his therapists face-to-face, we have been using FaceTime and Zoom to interact with them.

While I’ve had a front row seat at his therapy sessions for years, I sometimes would think that maybe age played a part in the things he struggled with. For example, cutting and writing are quite hard for him, even though he’s been working on those things for almost a year. I can tell he tires easily and he struggles to find a way that is comfortable for him. I would have thought before that this was something all four-year old children struggled with. But I can now truly see that Hudson is a bit different. Another thing I never noticed are the physical things such as squatting, pedaling his tricycle, or even catching a ball.

What’s even harder is I am noticing Finn, who is just 18-months old, can do some of these things already. He squats down low like it’s nothing, but with Hudson I have to physically push him down into a squat. Hudson is also currently working on throwing things into a basket. He does OK, but it’s not perfect. Meanwhile tonight, I watched Finn throw a ball perfectly into a toy bin (he had been watching Hudson’s session). While it’s awesome that Finn is 18-months old and can do these things, it also stings a bit that he can do these things so easily while Hudson struggles with them - and they are three years apart.

Although Hudson’s biggest struggles are physical and social, he is very intelligent. I believe that those with Autism have amazing talents, almost as a way to make up for some of the other things they might struggle with. For example, Kodi Lee from America’s Got Talent, he’s blind and Autistic, but is an amazing musician. Hudson has this great memory where he hears something once and he just absorbs it. He knew his colors, alphabet and shapes right as he turned two. He knows more about dinosaurs than anyone I’ve ever met. Just recently he showed us he can read. I have had a sneaking suspicion that he could but the other day he actually sat down with me and he read the book. It was so awesome! I mentioned it to his speech therapist and she wasn’t surprised and confirmed that she could tell he could read.

I still believe Hudson is on the high end of the Spectrum, but maybe my eyes have been opened more lately. And although it stings, sometimes badly, I know he will catch up. There are so many things he couldn’t do, like jumping, but now he can. It’s just going to take him a little longer. He might be a little awkward as he learns, but that’s OK because it’s what makes him who he is, and I personally think he’s just the best thing ever. 😊

Failing... for Charity?

On Saturday, Kayla, Hudson, Finnley and I participated in the "Steps For Kindness with Autism Speaks" virtual Facebook event. Or at least we thought we did.

About a year ago, I became interested in the various Autism awareness events around the country. Kayla and I will readily admit that we know next to nothing about what Autism Speaks does for families impacted by the Spectrum, and we certainly don't have any first-hand knowledge about how incredible their events seem to be. Rochester has an annual Autism Speaks walk, but we missed the boat on participating this past year. So when we saw the Facebook post for this event, we were immediately interested!

The goal of the "Steps for Kindness with Autism Speaks" event was simple; log at least 5,400 steps from 1pm-2pm on Saturday, April 25th, individually or as a team. The 5,400 steps represent acceptance for the 1 in 54 children in the United States that have Autism. A Facebook page was created for participants to share their photos and proof that they completed the challenge (ours are below).

At 3:15am Saturday morning, Finnley woke us all up screaming. Kayla and I rushed in to find him burning up and shaking like crazy. He had a fever of 103 - 104, according to our expensive-yet-apparently-not-always-reliable forehead thermometer. He had been teething for the past several days, but we thought it best to talk to the on-call pediatrician to be safe. At their recommendation, we gave Finnley a dose of Motrin, and I took him to the Emergency Room to be seen. When we got there, his fever had dropped to 100.4 (THANKFULLY). After a couple hours of his fever staying down, and nothing else found to be wrong, we were sent home.

Finnley and I got home at 6:30am, and struggled to find sleep the remainder of the morning. Kayla had stayed home with Hudson and hadn't gotten much more sleep than I did. Hudson, meanwhile, woke up early and was running around the house like a crazy dinosaur that was hopped up on caffeine (NOTE: he insists that he doesn't drink our coffee, and doesn't nap, so we have NO idea where this energy comes from sometimes). He was running full-steam ahead, and needed a way to get some energy out. After struggling through breakfast and lunch, Kayla and I decided to give this event a go.

Now we know what you're thinking - "WHY ON EARTH WOULD YOU TAKE FINNLEY OUT TO WALK 5400 STEPS AFTER HAVING BEEN IN THE ER HOURS EARLIER?!" The weather all week had been terribly cold and wet, and Hudson had not had much time to run outside. The temperature on Saturday soared into the low 60s, and the sun made a rare appearance this Spring. Finnley LOVES his walks around the neighborhood with us. We closely monitored his temperature and condition all morning, and Finnley seemed fine. After having been isolated in our homes for 58-going-on-5,000 days, we decided that some fresh air would do us all some good.

Knowing that 5,400 steps was a lot to get in during an hour - especially when you're pushing a stroller - we decided to head to the high school track a few blocks from our house. The track surface is new and offers some shock absorption, making it an ideal place to try to walk and run. Hudson always pretends to be the Mello Yello race car (thanks to a Kyle Petty toy car that he has from when I was a kid) when we walk around the village, and tries to "race" Finnley in the stroller. Those races are short-lived, though, when we have to stop at several intersections, and every car that drives by scares Hudson. So we told him that this was a special race track where there were no cars in sight. He was STOKED.

We got to the track and Hudson was instantly amazed. Finnley was jamming out to some music playing through our Bluetooth speaker. After 20 attempts to get a photo of all of us together (which NEVER results in everyone looking at the camera at the same time), we started our event. Hudson took off running, and kept on running as long and hard as he could. Finnley loves watching us run, and we were all cracking up. Hudson kept pointing out imaginary dinosaurs and creatures that he saw during our laps around the track, stopping only long enough for a quick sip of water before running off again.

Watching Hudson run inspires Kayla and I immensely. It wasn't that long ago that we had gotten a referral for him to receive Physical Therapy services to help with his walking and jumping. Running was a rare thing for him to do, and we were always fearful of the times that he would tumble and fall. But here he was, running laps around the track, not knowing that he was doing so to raise awareness for people just like him. It was truly, truly amazing!

When we got home, I was proud to see that we had logged more steps as a family than what the event called for. I quickly posted our photos to the event Facebook page, and waited anxiously to see it shared with the other participants. I saw proud families posting their photos, but ours never made it to the page for some reason. And then it hit me... WE NEVER FULLY REGISTERED FOR THE EVENT.

The Facebook page had a link to an application that we needed to download and use to track and report our steps for the event. In the chaos of the day, we completely missed this and completely failed at having our steps count towards the event's goal. But none of that mattered to us in the end. Finnley was healthy, Hudson was RUNNING, and we had a beautiful afternoon outside together.