written by Jessica Patay

If I could bottle up the joy on Ryan’s face and in his whole body in that moment, I’d be a billionaire.

When Ryan found out that we were taking him to Disneyland for his birthday and graduation, he felt it head to toe.

I felt it head to toe.

I received at least 5 hugs from Ryan in less than two minutes. Cassie even felt it through the computer. She was the Disney personnel on our “live chat for the disability pass.” That is how Ryan found out. I was trying to keep it a surprise. He was told we were doing this call with Disneyland in case we wanted to go this year. Well, sweet Cassie from D-Land said, “So I see you are going on June 27th?”

Me: Surprise Ryan! (Silently saying oh shit to myself.)
Ryan: We are?! (Cue his cute squeals.)
He hugs me immediately almost knocking me out of my chair.

All five if us Patays have not been to Disneyland TOGETHER in over 10 years.
All five of us Patays have not taken a family trip together in over 5 years.

Everyone was on board to give this a try. Despite knowing Ryan’s anxiety could kick up a tornado and dust storm. Kate and Luke were excited. I was actually excited, and I am not a “Disneyland person.”

I was so eager to TRY this. For Ryan. With Ryan. The five of us together. Doing a family outing together. Like what neurotypical families do. They just go and do and maybe kids fight and melt down but it doesn’t stop them from whole family outings and trips for years at a time. Imagine that.

Well… we tried.

We had the best intentions.
We were organized.
Tons of water and sunscreen.
Snacks.
Backpacks loaded.
Tips and tricks from my friends who are D-Land experts. We had the Disney APP on all of our phones.

We tried taking Ryan to the Happiest Place on Earth.

And yet, anxiety is an asshole that can even destroy iconic happy places.

It began the night before. Hours before bedtime. He could not settle himself. I could not settle him. I am at such a loss when he spins like this.
Overtired.
Overwired.
The unknowns, too many. Of how exactly the day would go. Which rides and when? Food—what and when?

Maybe my own anticipatory anxiety fed his anxiety.

We left the morning of a little later than I had wanted. Getting out the door for any family is a huge mountain to climb.

We arrived on site at 8:35 am and it took 90 minutes to actually park, ride the tram, and get into the heavenly gates of the park. And it was already 100 degrees. Or it felt like it.

Heat + fatigue + overstimulation = potential major meltdowns. We know this as parents. We know this as parents to Ryan. (Why didn’t we go in November? Oh yeah, his birthday is in June…)

And yet, we had the best intentions for a fun family day together.

Anxiety littered all over our day. Moments of joy on a ride followed by anxious questions about what is next. Using the “DAS pass,” essentially the fast pass for people with disabilities and their family, WAS a huge help. Not waiting in crowded lines, in the heat, is a game changer for kids like Ryan. But not being able to book all your rides in advance for the whole day was tough. There was no certainty for Ryan.

We are definitely newbies to the current ways of going to D-Land and using THE APP. Yes, we could have mapped it out better ahead of time. However, there are still things out of our control. For example, when rides suddenly shut down and then later re-open. This was very hard on Ryan. Therefore, we received the ripple effects.

By late afternoon, we were all melting—physically and mentally—and Ryan was insisting that we stay for the electrical parade at 8:45 pm. UGH.
How would we last?
How would we get out of the park?

At this point in the day we hopped over to California Adventure. I mobile-ordered our dinner and then we sat on the ground in the shade, glassy-eyed and sweaty. Our beloved friend/sitter, Cecilia and toddler son joined us. Another surprise for Ryan. It brought a spring to Ryan’s mood and coping. For a bit. She worked her magic at a “lightning lane” and got the kids onto Incredicoasters when my app mysteriously kicked out the reservation. Her peace and presence helped Ryan, and us, frankly, a lot.

And then the Anxiety Monster took over. That is how it feels. Sweet Ryan becomes so unruly and irrational. It is not him. It is the sad and uncertain and un-soothed Ryan that lashes out. And we felt the lashes. The heat and the NO NAP all day, plus overexcitement, took over his brain and body.

And can we pause and just give a shout out to Kate and Luke?

This is VERY HARD on the siblings. Ryan is 19, over 6 feet tall, having public meltdowns or publicly crying or publicly whining. It is not cute. It is not quiet. It is not easily quenched. It feels never-ending and inconsolable. Luke and Kate are caring EMPATHS. They feel this deeply.

We had to leave.

Our plan was to quietly walk towards the exit after the last ride “Soaring Around the World.” We would NOT announce we were leaving. Cecilia’s brilliant idea. Just keep walking. She kept Ryan engaged in conversation, distracting him from what was happening. I kept looking back fearing he would get triggered again. But it worked! All the way to the tram. We benignly mounted the tram and waited a sec. Cecilia told him her car was in another location and pointed towards us.

“We’re going home?” He asked as we waited there with bated breath. Or I did at least.
“Yes, we are exhausted. It’s time.”

The whole way home the manic irrational anxiety spewed out for us all to soak up. Or ignore. Or try to sleep through. How my husband Chris stays so calm, through it all, amazes me. Non-reactive. I don’t know how he does it.

I was spent.
I was done.
Frazzled. And if truly honest, deep down I was sad that this was so hard. Not a failure. I won’t say that.
Just so hard on Ryan.
So hard on Luke and Kate.
So hard on me.
It feels like anxiety beat us all up and we just need our comfy beds to swallow us up for days to recover. And a huge dose of self-compassion for all our emotions and amusement park hangovers.

Was it worth it?
Was it worth that initial joy that Ryan received when he found out?
Was it worth the experience of Newer Disneyland rides and attractions?
I really don’t know.
Nope, I am lying.
I DO KNOW.
It is NOT worth it. I don’t think it is worth the complete disappointment, depletion, and mental beatings we get from Ryan’s anxiety monster.
It is not worth watching him suffer in uncertainty.
It’s not.
The price is too high. Way too high for him.
For his sweet siblings.
For our family connection
For my heart.