The Boy Who Found He Could Climb Mountains

Hudson has always struggled with his spatial awareness. He would often struggle to walk down a single step or two (and sometimes even on flat ground), or have issues with jumping from one place to the next. Some watching his movements might say "man, is that boy clumsy" or "he doesn't pay attention to where he's going!"

What they don't know is that Autism goes beyond mental, social, or emotional developmental delays. Children on the Spectrum often have delays in their physical development. Core strength and muscle development can be much weaker for Autistic children. This loss of muscle tone causes issues with gross and fine motor skills development. The simple abilities that we take for granted; holding something firmly in our hands, climbing over small obstacles, dressing ourselves, etc, don't come easily for those with Autism.

Once we had Hudson's official diagnosis, we realized that we had a lot to learn. The Autism Society website contains a great deal of information about the related conditions that someone on the Spectrum might experience. According to their website, 30% of children have low (or weakened) muscle tone.

https://www.autism-society.org/what-is/diagnosis/related-conditions/

Hudson certainly falls in the 30% that suffer from low muscle tone, and he struggles with his gross and fine motor skills. While he has learned how to put on his boots and zip up his coat, he hasn't mastered how to dress himself yet. Luckily for us, he's at a great school with amazing teachers and therapists that work with him on developing these skills.

In addition to his OT services, Hudson has also had PT as well, to help him build his muscle strength and to work on his balance. When COVID shut down the world, we transitioned to PT services via web conferencing. Boy... was THAT a task!

Kayla and I would arrange his PT sessions during Finn's nap, as it required both of us. I served as the "film crew" and "tech lead", mirroring the iPad to the TV and moving in a way that allowed his therapist to track his movements on her screen. Kayla would be on the ground with Hudson, setting up his series of exercises and helping to move him in certain ways while following the guidance of his therapist. It took awhile for us to get the routine down, but I have to say that we became pretty good at it... as long as Finnley was asleep (we won't talk about the struggles we had while Finn was awake, but trust me; those sessions weren't pretty!).

We have been amazed to see how much Hudson has developed since he was diagnosed. We hear stories about the ways he moves around the playground, and we have seen his strength and confidence grow here at home.

Winter/Spring isn't the most lenient for outside activities here in Upstate NY. A few days ago we were gifted with a warm spell that allowed us to take the boys to the playground. It didn't take long for Hudson to run over to the climbing equipment, which always makes me take a deep breath and say a silent prayer. We know that he isn't always aware of his surroundings, and want to protect him from harm. But we also want to let him live - and realize for himself the things he didn't know he could do.

Hudson quickly showed us how he climbs up the vertical steps to the slide, and how he climbs over "Dinosaur Mountain." Those obstacles are mere feet in height, but to us - they are mountains.

And Hudson is becoming pretty damn good at climbing mountains.

The Immeasurable Benefits of Early Intervention

I can't believe that our last blog post was in September. It seems like the pandemic really wore us down the last few months of the year, as I'm sure it did for all of you as well. We promised you all more content, and failed to deliver. Believe us when we say that there is sooooooo much more that we want to share. And we promise you an update soon on how we closed out 2020.

As we are early into 2021, it is a time for fresh starts, and for taking early action on making our lives better. It reminded us of how truly important Early Intervention was for Hudson... and for us. Despite how intelligent and amazing Hudson is, he would not have made the progress that he has made to-date without it. I was traveling 50-75% of the month for work when our journey with Early Intervention started, leaving Kayla to handle these uncharted waters on her own. Here is her experience, in her own words.

Kayla

I’ve never been shy about Hudson’s Early Intervention experience. In fact, many people have approached me and asked me how to go about getting services.

When Hudson was 18 months old we noticed that he only had a handful of words in his vocabulary. Some of those words that should’ve been clear were not ("Mama", "Dada", etc). I brought it up to his pediatrician and she assured me he was "right on track" and would probably explode with a new vocabulary within the next few months. But instead of exploding with vocabulary, it completely stopped two months later. That’s when we really started to worry.

I was out with my two best friends one night, and I brought up my concern. One of my friends is a speech pathologist and I wanted her opinion on what to do. She brought up contacting Early Intervention through Public Health at our county. I had heard of it but didn’t really know what it was. She explained to me to contact our pediatrician and to get a referral and that (after an evaluation) he could get speech therapy at home at no cost to us.

The next few days I went into research mode and searched public health and services and made phone calls to the doctor’s office. For anyone wondering - you DO NOT need a referral from the pediatrician (you can still get one, but it is not necessary). Once I reached out to public health they helped me set up an at-home evaluation.

I initially met with a public health official and we went over my concerns. A couple of weeks later, we did an evaluation with a psychologist and speech therapist. They spent about an hour and half interacting with Hudson. About one week later they reached out and told me he would be getting a speech therapist twice a week, if they could find one.

Fun fact: Early Intervention therapists are very hard to find, especially in a rural area.

I was very lucky in that one of my coworker’s son had a speech therapist that agreed to take on Hudson once a week; still not exactly what he needed, but better than nothing. They also told me they were going to find him a special instructor to see him twice a week. This person works on everything from OT skills, speech, and even some PT skills. Special instructors are also a bit like unicorns, but we were very fortunate to find one - even if it meant that she was driving 45+ minutes (one way) to see him.

I was honestly flabbergasted when they recommended a special instructor. I only wanted speech for my child; he did not need help anywhere else. However, I let them schedule it and thought that this special instructor would agree with me and say that "Hudson didn’t need it" and that she would cancel his services within the first month. Luckily for us, that never happened.

Hudson's special instructor began meeting with him primarily while at daycare. And, while fully admitting that she could not offer a diagnosis, she was the one who recommended that we have Hudson tested for Autism. I HATED her for saying this and would roll my eyes at the things she would say or write down in her notes. We thank God everyday that we didn't brush her off and followed through with her recommendations.

My husband and I decided to schedule the testing, even though we were unconvinced that Hudson was on the Spectrum. As time went on I worked more and more with this special instructor. She not only became a friend, but a support system as well. She was there after we got his diagnosis and sat with me as I cried... assuring me that he would do great things. When Hudson aged out of her services I cried as we had to say goodbye to her. We knew we would all miss her, and although Hudson has another wonderful special instructor, we still think about our first special instructor and how much she did for us. There's a sad irony in knowing that these special instructors are only part of a child's life for a short time, and yet their impacts can last a lifetime.

Between my best friend recommending Early Intervention and our fantastic special instructor helping us, I don’t know where Hudson would be now without Early Intervention. I owe both of them so much. I was naive at first, but I’m glad I listened to them and took their advice. If you are ever concerned about your child, reach out; there are so many resources out there that you might not even realize exist. Working in a school I see therapists coming and going nonstop... and I never really thought about what they did. Now I see them as superheroes.

Since his time in Early Intervention, Hudson has had four different therapists (OT, PT, Speech and Special Instruction). Hudson adores each of them, as do we. It’s people and services like this that can make all the difference.

Going Back to School

It's been six months since Hudson last went to school. Kayla did a phenomenal job handling his virtual learning at the end of the Spring semester, and his teacher (Mrs. Smith) provided him with some amazing materials for at-home work. It feels like forever since we last got him ready for a day of learning and fun with his teachers and classmates.

I remember the anxiety I had going into last year's Open House, where I watched my "is he REALLY this old already??" little buddy sit at his desk and take in his surroundings before his first official day of school. We didn't know if he would be excited, scared, overwhelmed, or any other adjective used to describe the feelings of a child who cannot easily communicate his thoughts and/or feelings. Who would cry first; Hudson, or his parents? Spoiler alert; Daddy got pretty misty-eyed during the Open House.

We struggled late this summer with trying to get Hudson excited to go back to school, knowing that doing so would be a challenge. With so much uncertainty about what school would look like in Fall 2020, it made it all the more difficult for us to find SOMETHING tangible that we could use to entice him to want to go back. The landscape has completely changed. No more sitting with desks together, no more close playing with classmates. When he's overwhelmed, sad, or having a panicked episode that he can't control, there won't be any hugs or "pressure points" to soothe him. Believe me - those made ALL the difference for him last year. Armed with next-to-nothing to excite him, all we could do was repeatedly ask "Hudson, are you ready to go back to school?" His answer? "Noooo! I don't want to go back to school!!"

I know what some of you might be thinking; "there was always the option to go remote - he doesn't have to go back." But it's not that simple... for us or for Hudson. His intelligence is practically off the charts. He's shown us that he can read (and does so quite often), and is academically in a place where another year outside of the classroom wouldn't hurt him in that regard. What he needs the most are the pieces that he cannot learn by being remote. He needs to socialize, and learn how to engage with people outside of his home. He needs to observe how his peers encounter emotional stimuli, and watch how they react. While we had some success with teletherapy over the summer, it became abundantly clear that remote sessions were not going to be a viable long-term solution. We debated the idea of trying to find a way to keep him remote, but knew that we simply could not do so and have it be in his best interests. Hudson had to go back to school.

Thanks to COVID, there was no Open House for this year. And honestly, I think we are lucky that our district is able to allow kids to return to school at all. I was able to meet Hudson's 4-Pre K teacher last Friday, though. Kayla has known her for quite some time, having worked at the school for the past several years. We took Hudson with us to get acclimated to his room, and to see how he would react. The room was warm and welcoming, and Hudson immediately became excited by all the things he saw! His demeanor changed instantly from weeks of emphatic "I DON'T WANT TO GO BACK" statements to "I CAN'T WAIT TO START SCHOOL IN MY NEW CLASSROOM!"

My relief at this moment was short-lived, though, having been replaced with this gut-wrenching feeling that I needed to be sure to find an opening in our conversations to bring up Hudson's Autism. I needed to explain his triggers... how he might struggle to communicate... how he talks about "a bully" being the reason why he's upset at something (when there really isn't a bully)... etc. These are the same feelings that creep up in me when Hudson meets new people, or finds himself in a new situation. I feel almost as if I have to be a flashing billboard that needs to display all of his challenges to someone, as a means to protect him from judgement, exclusion, or anything else that he needs to be guarded from. Any time we start to feel really great about where he is (and seemingly almost forget that he's Autistic at all), moments like this happen that remind us that he doesn't leave the Spectrum for awhile and go back to it; he's always going to be on that ride. And it breaks our hearts, over and over again.

When I switched to flashing billboard mode with his teacher, I realized that this would likely be a song that plays on repeat each new school year. I hope to one day be past my billboard stage, and trust that the world will embrace him entirely; challenges and all. For now, I'll settle for excited he is to go back to school, and how excited his teacher is to have him.