Coping & Conquering

We did it! We went to Disney World with our precious Nico and he was a CHAMP! All of the months of planning, and strategizing, and having a Plan A, B, C….Z for when he melted down paid off royally! To any Autism parent out there that is holding off or not even considering the thought of taking your child to Disney because of all of the what-ifs, I am here to tell you….it is POSSIBLE! It’s all about planning and having faith. I know Autism looks differently for all of our kids, but what I have learned on this journey is that we cannot have stringent expectations, we have to take it minute by minute, and we have to be flexible.

First off, you MUST work with a certified Disney Planner! It is a MUST! It’s a free service that Disney provides for travel agents and it made all the difference. The young lady I worked with took all of my needs and wants and created an incredible itinerary from it all. Disney is a beast to plan on your own. Nico has his own time limits for when he is done with something, so full day trips to any Disney park were out of the question. The half day plan was also going to be beneficial for the grandparents we were bringing with us and my little niece and nephew too. Believe it or not, the biggest alluring factor of the trip was the resort pool so forget Mickey…they needed to get back to the pool for some quality swim time. I mean, this plan was also going to be conducive for me since I am 6 months pregnant, but I guess I was living “Super Woman” syndrome or something and figured I could manage anything thrown my way…ha! Oh and FYI: Disney has special accommodations for those with Autism and special needs to make your experience even more enjoyable. Our travel agent shared all of that information with us as well. However, I am proud to say….Nico didn’t need those extra accommodations at all!

From the moment we arrived at the resort, which I highly recommend a Disney resort that has the monorail pull right into the hotel and drop you right off at the parks, Nico was enthralled. With so much change being thrown at him at once, I never know how he’ll do, but he was engrossed in every sight, sound, and smell. I planned each day with a half day park excursion—Fast Passes for rides/attractions are an absolute God send—(especially in 1000% humid Florida air), pool time back at the resort to cool off, and dinner after 8pm so that everyone could rest, relax, and shower before dinner. I didn’t know if it would all go to hell on any given day, but that’s where my multiple exit plans would come into place.

The heat, I think, actually made Nico much more mellow than he would’ve been if it wasn’t as hot as Hades so that was a surprising plus. He coped so incredibly well and I attribute that to the years of ABA Therapy he has had. Our kiddos truly need good coping mechanisms to support them when they start to get over sensitized which he did just ONE time. Ceiling fans are Nico’s enemy so the fact that they were the main source of cool air at our outdoor Luau dinner meant that dinner became more of a meltdown intervention for us. But, the silver lining was the fire thrower at the end of the dinner had Nico going hog wild with excitement!

We had a truly comical moment at one of our character dinners with the characters from Cinderella though. Nico struggles with sharing and so when the Wicked Stepmother came to our table and took one of Nico’s beloved books (that we must pack and take with us on every outing) Nico was none too pleased. He glared at the woman and was ready to pounce on her, but remembered that he is suppose to share so when I asked him to count to 10, he obliged (well sort of…he literally counted to 10 at the speed of lightning) then swiftly approached the woman and said (on his own) “excuse me, my turn please.” It was hysterical, and magical, and a bit terrifying all at once. I wasn’t sure if he was going to gently scold her with a quick swipe of his hand like he tends to do when he survives a sharing episode, but instead he just glared at her with a death stare. She was a good sport and stayed in character commenting, “the feeling’s mutual” as she strode away.

He also survived a long travel day home, flight delays, stuffy plane and all without one breakdown! All in all, Disney World truly was magical for us and we kept it as the “Happiest Place on Earth!” I even won a new fitness badge on my Fitbit for averaging around 18,000 steps a day. Not bad for a geriatric preggo! Nico was a conqueror of Disney World and my hero throughout our whole trip. My husband came in second for also being a true champ. Between the heat and fear of Nico breaking down, I was worried I would be using an exit plan for him too…ha. I know it’s because he saw how happy his kid was!

But with every conquering, comes struggles in other places for Nico…

And so as we come off the high of Disney World, we are now faced with the surmounting pressure of preparing him for Kindergarten. He has been struggling with focus when it comes to his “school time” programs at his therapeutic day school and I fear that this is just the beginning. He is such a kinesthetically-driven little boy so sitting still is not his strong suit. If he is not interested in something, he truly could care less. We’re seeing this to be the case with the world of academia, except when it comes to reading books. Add on the issues he is still having with lack of communication (most of his talk is through echolalia), sharing, and hitting when he doesn’t like what he is being told and you have a parent’s worst nightmare a-brewing.

I work so hard to live in the world of his triumphs and stay eternally hopeful, but I am now waking up in night sweats (it could be a leaky bladder too, but night sweats are more intriguing to write about) with this dreaded panic that no amount of coping mechanisms is going to prepare Nico for a classroom of 20+ other students with one teacher and an occasional Sp.Ed. teacher and weekly aid. Of course Nico was a champ at Disney; despite all of the meltdown triggers and changing environments, he had an army of people there to help him. People who know him, can predict almost every move of his, and are ready to take care of things for him. I know it won’t be easy in the beginning of the year, but I am beginning to fear that Nico isn’t as prepared as I like to fool myself into thinking.

I think I have become immune to Nico’s idiosyncrasies because they are part of who he is and we see them every day. We find them endearing and cute, but when he is with other children he sticks out like a sore thumb. And the stares and glares he gets, even from children who are around him more frequently, absolutely breaks my heart. That’s why I will continue to work to educate parents and children about the wonders of Autism and encourage the school parents I meet to have open dialogue at home with their kids. Empathy is key.

When we were at Disney, I was able to block out all the stares. Nico was flapping his hands like crazy at every turn because of how excited and happy he was and I could have cared less, but maybe that’s why they call it the “Magical” Kingdom…it magically changes your whole state of being. Now that we’re home, I am so overly sensitive to it all again. I’m learning that I, too, may need some coping mechanisms of my own.

Nico will continue to conquer so many challenges as he grows up, I know that. He will struggle and have to learn new coping strategies as well, but I think that for the first time, I am realizing that I will be coping and conquering right alongside him…and doing it with a new baby. It makes me wonder if I truly will have the continued strength and perseverance to keep it all together because honestly, I’m tired. I’m sure it’s because I have a human being sucking the life out of me currently, but still…I’m tired. I find it ironic that I felt less tired in Disney World than I do right now in my home as I write this.

So, I empathize 1000% for all the Autism and special needs parents out there who have children with even more severe needs than my kiddo. I applaud you because I know you’re out there crusading and fighting and persevering on a single drop of energy. To get up everyday knowing there is no foreseeable end in sight to the amount of struggles that await our kids and, yet, still go out and kill it. That’s BADASS!

My Mother had this quote that hung in our kitchen my whole childhood and she used to say it to herself when things got tough: Do what you can, where you are, with what you have.” I understand the power behind those words so much more now. I will not be able to control everything and I can’t change everything for the better. I also know that I will never know how strong I am until I have no other choice (another one of my faves that my Mother would preach to me growing up) which truly has become my mantra in life, but what I do know, right now at this moment, is that I survived Disney World so anything is possible!

2 thoughts on “Coping & Conquering

  1. I just read this beautiful passage AND then read it again. I keep thinking about how amazing you are, and how much you do for your family (and for your friends). Your mom must be smiling down SO SO SO proud of the incredible human you have become!!!

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s