Being the 'King of the World' on the Autism Nature Trail

We took a day trip last month to Letchworth State Park to experience the newly-opened Autism Nature Trail (or 'ANT', as it's called within the park - https://autismnaturetrail.com/ ). This trail is the first of it's kind in the country and is a true spectacle to take in.

"I'm the King of the World!"

The entrance to the trail has a beautiful pavilion with friendly staff there to greet you and help you prepare for the journey. It was a beautiful day weather-wise, with the first hints of Fall color invading the trees around us.

The ANT is about a mile long and has several stations along the way, with many focusing on specific sensory activities. The stations are clearly-marked and branch off slightly from the main walking trail. Each station contains signage about its purpose.

The first stop (Sensory Station) was all about touch, with large shelves containing various tactile items - everything from tree branches to antlers and bones. It didn't take long for Hudson and Finn to gravitate towards the bones, pretending that they were 'blasters' to use in battle with one another.

Sunshine Slope was our next stop where the boys climbed inside suspended canvas pods to relax and laugh together. Music Circle contains wood and metal instruments where people are free to create their own musical masterpieces. A little further up the trail is Reflection Knoll, containing a circle of large rocks to climb, stand, or sit on and enjoy the serenity of the woods around you. It was here where Hudson climbed up on the tallest rock that he could, raising his arms to the sky while exclaiming "I AM THE KING OF THE WORLD!"

Meadow Run is in a beautifully landscaped clearing that takes you up and down a small hill. Hudson was elated to see a small snake slither across the trail here, saying...

"Mom ... Dad! I saw a non-venomous snake! I know it wasn't poisonous because it's head wasn't shaped like a 'V'!!"

Meadow Run also contains a large spider web station and several balance beams of varying heights. The boys had a blast pretending to be Spiderman on the webs while talking to the children next to them on the balance beams.

We probably spent the most time at the last two stations; Design Zone and Playful Path. Design Zone encourages structural building and design, where a countless supply of bamboo poles are available for use to build whatever structures come to mind. Given Hudson's lack of spatial awareness, this station gave Kayla and I the most anxiety; we either had to dodge a swinging pole or apologize to a parent next to us for their having been in Hudson and Finn's path.

Playful Path has a couple of uneven trails that swing off and across the main trail. These pathways are built with logs and rocks of varying heights meant to test one's balance. Hudson handled these like a champ, pretending that we were on an epic adventure where the ground underneath was treacherous lava.

The trail ends back at the same pavilion where you started and contains a chalkboard to share about your journey as you leave. Hudson was quick to grab the chalk and write his name before drawing a dinosaur (or Godzilla, it's hard to keep those apart sometimes).

Our journey on the ANT was a special one. We met several nice families with children of all ages along the way. When Hudson is around other kids at school, it's often easy to see how different he is from his neurotypical peers. This experience was the first time where we got to see him among countless others on the Spectrum; kids that are more like him than he realizes.

For Hudson, this was just a family day where we went someplace cool. But for Kayla and I, it was truly extraordinary.

Thank you to NY, Letchworth State Park, and the numerous donors who made the Autism Nature Trail a reality. It truly is a special place with something for everyone! We can't wait to plan another day at the ANT next year.

"Be happy for this moment, for this moment is your life."

Getting Lost in Labels and Hollywood

Who remembers watching a movie or TV show and feeling that a particular scene, character, or episode fits you to a tee?

I'll admit that I have seen very little programming where Autism and the Spectrum are key components of the story line. But the ones that I have seen? They hit me dead center and as hard as can be. I can clearly identify with the characters and see the similarities in Hudson, Kayla, and/or myself.

Kayla and I binged the series 'Parenthood' not long after we received Hudson's diagnosis. One of the main story lines of the show follows Max (a kid with Asperger's Syndrome) and his family as they experience life on the Spectrum. Each episode gave me more insight into what life might be like for our family as Hudson got older. Max's triumphs are celebrated greatly by his family, and his more challenging encounters (at school, in public places, at home) are met with heartache, tears, and sometimes... anger. I found myself really relating to the Braverman family (minus their large incomes and beautiful lives in CA, of course). Finishing the series had me feeling a bit empty and longing for the next "escape" to lose myself in for a few hours a week.

A couple of weeks ago we started watching 'Atypical' on Netflix, a series that follows Sam as an Autistic kid (sorry, 'kid with Autism' - more on that later) and his family. We're only a few episodes into the first season, but it covers some things that 'Parenthood' did not - counseling sessions for Sam, an Autism support group for the parents, and a younger sister (not on the Spectrum) who deals with life in the shadows of her brother's Autism. The show tries to bring some humor to Sam's diagnosis, but it really is more drama than comedy.

We watched two episodes last night that really got me thinking, specifically about these key plot lines:

Plot Line 1 - Public Triggers

Sam's therapist (Julia) is trying to help him navigate dating, and suggests that he start picking out his own clothes - things that made him feel good - instead of relying on his Mom to dress him everyday. Sam's Mom initially protests, reminding him how being out in large crowds tends to not go well for him. When they get to the store, Sam's Mom immediately becomes frantic/slightly neurotic about the packed dressing rooms and the loud noises, and is so focused on these potential triggers that she doesn't hear him when he says "I'm fine, Mom. Everything is fine." His Mom presses the store manager to make things more accommodating for her son (who continues to insist that he's fine) and eventually ends up thrown out of the store. As a parent, I know the anxiety all too well that comes from trying to have a contingency plan for every possible trigger that Hudson might encounter when leaving the house.

Plot Line 2 - Labels

Sam's parents go to an Autism support session. His Mom typically goes to these alone, but his Dad decides to attend this one as he wants to learn more about how to better handle things after Sam becomes injured in public after a "episode". The session leader thanks Sam's Dad for coming and asks him if wants to share anything. He leads with describing Sam as "my Autistic kid", and the session leader immediately corrects him...

"People first language - Person before diagnosis."

I had never even heard of PFL - People First Language - before this episode. In one of our earlier posts about meeting Hudson's 4-PreK teacher last year, I always feel the need to carry some flashing sign or banner that tells people about Hudson's diagnosis. I rationalize it in my mind as a means to alert them before they have a chance to cast judgment on his behavior and/or on our responses.

In an episode of 'Parenthood', Max's Dad (Adam) is at a grocery store with him and Max points out that a customer ahead of them in line has too many items for the express check out. Adam tries to diffuse the situation but clearly becomes agitated when the customer ahead of them passes judgement and uses derogatory language about Max.

I get that this is Hollywood, and the scene is meant to illicit an emotional-yet-not-entirely-realistic-response (and boy did it ever with me). The reality is that we live in a world where judgment is passed freely, and often without mercy. People can watch a 30 second encounter with Hudson and think that they know everything about him and us as his parents. When he melts down while waiting in line for something (see https://www.lettersfromthespectrum.com/post/taking-the-stares-by-kayla), my gut reaction is to immediately tell everyone within range...

"He has Autism" or "We have an Autistic son, so..."

Just typing these words I realize that I am failing him with this language more than I am protecting him. Autism will always be a huge part of who is, and people won't always understand or accept that. And I won't always know when it's appropriate to use/not use the label.

But Autism won't be all that defines him; it shouldn't be his true "label" in life.

Maybe one day someone in Hollywood will write an episode or story line about looking past Autism labels... it sure seems like a great place to get lost in, at least for an hour or so.

A Spectrum Dad's Father's Day Guilt

On a day designed to celebrate Dads/Step-Dads/Stand-ins (and I most certainly was celebrated, thanks to my wonderful family), I couldn't help but feel... guilty.

We have always been honest in our blog posts, and I'm about to be brutally honest with you all now.

The truth is, I haven't been the best Dad or husband that I could have been this past year.

I realize that there isn't a rubric to measure how well we did (or did not do) as a Dad over the course of a year, but I can't help but feel that I SHOULD have done better. Trying to keep Hudson grounded, calm, and stimulated can sometimes be a full time job. It takes a lot of energy to surround him with the best world imaginable at home. I often feel like I am in constant surveillance mode, wanting to identify and prepare for any potential triggering mechanisms that might appear in his way. Birthday parties are a great example; Hudson struggles with gift-giving, always wanting to be the one to open gifts up. He doesn't care if they are meant for him or not - and if he can't open them, he sometimes spirals out of control. Kayla and I have to be prepared for that, and always have an exit strategy or some back up plan to bring him back to center.

With so much focus on Hudson's needs, it's easy to overlook that there are others in this family that have needs, too. Finn is an energetic, fun, spunky, daredevil who has his fingers on every single button Kayla and I have. We thought that we got lucky when we dodged the "Terrible Twos" with Hudson, but believe me when I say that Finn is MORE than making up for that now! His outbursts are frequent (and often accompany Hudson's, albeit for different reasons) and he often ignores what Kayla and/or I say. I'm certain that this kid has a series of award-winning books in the works; "Defiance", "Watch How Far I Can Throw My Food" and "How to Get Away with Murder in a Diaper".

Kayla has worked so hard this past year. She transitioned out of the library and into the classroom to teach First Grade, doing so with only a couple of weeks to prepare. She's days away from surviving it all, and she has done great! But it wasn't easy on her. This wasn't a school year that was easy on anyone... let alone a first year teacher. There have also been other things in our lives this past year that have caused tremendous stress and heartache, and pushed us to our breaking points.

I'd like to say that I always give Finn and Kayla the same grace and patience that I give Hudson, but I don't think that would be true. There are just some days where I don't have enough fuel in the tank for them all. Days when the boys will ask me to play in the toy room, but I delay because I'm sipping my coffee or skimming through a quasi-interesting article online. Days when I'm behind on a project at work and have to work late. Days when there's a project at home that needs my attention and I thrust all of the other household/parenting duties onto Kayla. There were fights I started unnecessarily, or fights that I let carry on for longer than I should have. Worst of all, there have been days where Kayla just needed a hug, but I didn't pick up on the hints that she was giving me.

For all of that, I am... guilty.

Raising a family and keeping a marriage strong takes a lot of work and effort. The great Dads/Step-Dads/Stand-Ins out there get this already (and I know I could learn from them all), but our families deserve the absolute best that we can give them - each and every single day. Having a child with special needs adds several layers of thought, care, and complexity, but that shouldn't take away from what you have to give to the rest of your family.

Play with your kids when they ask you to - that internet article will still be there when you're done. Listen to your spouse when they vent to you - REALLY LISTEN - and be ready to pull out that hug.

I'm going to try to remember all of this between now and next Father's Day. I've been pretty good, but I will be better. Believe me when I say this isn't meant to be a grab for attention; it's an honest confession.

Hudson has opened my eyes to so many simultaneously challenging and wonderful things, and he, Finn, and Kayla have given me more joy than I ever could have imagined. Years ago I used to wonder what being a husband and Father would be like. Father's Day is a day that I look forward to every year - and it's a day that I wouldn't get to celebrate without them. I so grateful for my family, and for their love.