Posted in Atttitude, Autism, Disney, Disney Parks, Special Needs, Thoughts, Uncategorized, Walt Disney World Resort

“Leave Me Alone!”

If I may preface this Post with a brief word about judgement.

Judgement is a natural instinct, I don’t care who you are, we’re all guilty of it, and we’ve all passed some during the course of our lives. The challenge here is to try to stop yourself before you act, and do any more potential harm. You can’t get your words back. You can never repair the damage, because at the end of the day it’s about how you made that person feel.

Recently I took my son on vacation to Walt Disney World Resort, his favourite place on Earth, and ours too, because that is the place where we have seen the greatest developmental gains, both spontaneous, and gradual. We’ve seen his independence thrive, his sensory limitations expanded, his adaptive skills increased, and everything in between, so yes, we try our best to get him there as often as possible because the joy that radiates from him when there, is magnanimous. Just take a closer look at the photo of him on his way to Walt Disney World Resort.

It was there that he learned proper dining etiquette, and how to wait in lines (we’re up to 30 minutes now), and it was there that we are always made to feel at home by the caring, helpful Cast Members (that’s what Disney employees are called). But, it wasn’t always so easy, or straightforward.

I clearly remember the days when we had a card for a special accommodation to attractions, and we were judged by others in line because my son’s disability is not clearly visible until you begin to really observe him. I was the mom who had little cards printed up explaining his disability because I was truly interested in educating others, and this helped me save my voice from repetition, but most importantly, it saved my son’s dignity. He may not be verbal, but his comprehension is close to his age level.

So, yes, I was and still am his greatest advocate, and my antennae are on high alert for any unfair stares, and/or comments, but I always try to handle uninformed people with care, because it’s not their fault that they do not know about autism. So I can’t judge them, and I won’t. Life is not always about us after all, and not everyone is affected by disabilities.

But, last week, I learned something new about my son. He does have a voice other than through his art, and his music.

He spoke up.

We were lined up at a kiosk at Epcot to pay for something, and while he stays close to me, while I am paying, he tends to swagger from leg to leg, and do odd things with his hands, and he may babble a few words.

Until I heard a voice behind me from a woman who quite harshly asked him, “what are you doing?”

His response, “leave me alone!”

So, while this may not have been the best response to the woman, it gave me great hope, because he actually advocated for himself.

At that point, I turned, smiled, and briefly explained about my son, to which her reply was mockery through sneers at us.

We just walked away.

It was the best thing to do.

My job now? I have to teach my son the proper language in dealing with comments that ruffle him, because “leave me alone” is harsh, and inappropriate.

So please, while it’s easy to judge, try to derail from it, by thinking that we all have feelings, and that we may all do things differently from each other.

If you can’t say something nicedon’t say nothing at all.” – Thumper

Posted in Atttitude, Autism, Life, Special Needs

A Rough Day

In the wake of needing to fulfil a basic human need, my son was subjected to public degradation, not once, not twice, but three times in a span of 20-minutes.

My son is a young man, afflicted with autism. His cognition is that of a toddler. His skills are improving, his speech is improving, he is not reciprocal with his language, but he understands. He understands everything. He is sensitive to people’s feelings and to their expressions.

Last week, he was made to feel like a piece of trash.

“Get out, you don’t belong here, you’re a man.” This is what the public restroom attendant told us both, as I was waiting with my son for a Handicapped stall in the female restroom.

I described my son’s condition to the attendant in front of others and that he requires assistance with toileting, I explained that we tried to wait for the one and only Family Restroom for a reasonable amount of time, but when my son expressed behaviours of urgency I had no choice but to enter the female restroom. She was unyielding. She maintained that he “could have waited for the Family Restroom and that he had to leave.”

When I was assisting my son with hand-washing, the attendant was still there reprimanding me and telling us that he doesn’t belong in the female washroom because he is a man. When we left the female washroom, the attendant followed us out and continued her reprimands. At that point, I could feel my anxiety rising and I chose to leave because I didn’t want my son to become even more upset. Curiously enough, the Family Restroom was still occupied. Twenty or so minutes had elapsed from the time we tried to use that restroom. Did the restroom attendant seriously expect my son to wait that long? Is that reasonable? Is it up to her who uses the restrooms? Is that in her job description?

What if my son was neuro-typical and in the process of a gender change not yet entirely complete, and his physical appearance was still that of a male, but he identified himself as a female? What then?

How can this person act this way?

I have since contacted my local Human Rights Tribunal and I have opened a file against the property managing company that owns this mall. I contacted the property managing company and expressed our experience and I was promised that by the end of September 2019, more Family Restrooms and a Universal Restroom would be in place, to accommodate all people. I was also informed that sensitivity training had already commenced for this particular restroom attendant and all others contracted out by that third party.

Update:

The local mall is almost finished completing the installation of three “Universal Washrooms” and one more “Family Restroom” (in addition to the original Family Restroom).

Success! Andrew’s challenging experience paved the way for better experiences for many people.

 

Posted in Autism, Disney, Disney Cruise Line, Disney Parks, Uncategorized

Disney Cast Members

Recently, a poignant story came out about an autistic boy’s positive experience with a Disney Character at Walt Disney World Resort. I must admit, this is not a unique experience amongst guests with special needs at “The Place Where Dreams Come True”. It’s commonplace, as Disney continually strives to afford all guests as enjoyable, enriching, and as inclusive a vacation experience as possible — and to this very day, I can honestly say that every single Disney vacation holds a unique and special moment, and compassionate accommodations for our son that ensured he had a magical visit.

So, this is why…

  • to Winnie-the-Pooh who was easy-going about Andrew nuzzling against his snout…
  • to Buzz Lightyear who captured and maintained Andrew’s attention in mere seconds…
  • to Simo, our delightful server at ‘Ohana who knows exactly what to bring Andrew and when…
  • to Eeyore who lets Andrew pull off his tail and thanks him for noticing…
  • to the Guest Relations Cast Member who nods with understanding with no further explanation…
  • to Donald Duck for not losing his feathers when Andrew stepped on his big, yellow webbed feet…
  • to Cinderella for her feather-light embrace and the first girl that Andrew smiled at…
  • to Mickey Mouse for noticing Andrew’s shyness and for stepping out of the tent to tickle Andrew’s feet and make him giggle…
  • to the countless Cast Members for making us feel like a ‘normal’ family…
  • to the Cast Member who spotted us on the Monorail platform and who came over with Mickey Mouse stickers and a set of FastPasses…
  • to the place where Andrew told me he loved me and gave me a peck on the cheek for the first and only time in 2012…

Great customer service with The Walt Disney Company stems from their  “Four Keys”, which guarantee exceptional Guest experience – Safety, Courtesy, Show and Experience!

They’ve unlocked the magic when it comes to customer service.

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Posted in Attitude, Autism, Decluttering, Disney, Jackie's Adventures, Life

FREE At Last!

The biggest mistake I ever made was the ‘art of collecting’ and storing things in boxes when I first got married. I actually thought I was demonstrating organization. Everything was important, everything mattered and everything was tied to a special memory – even the tiniest piece of paper filled with doodles opened a flood of memories while learning about Louis Leakey in university.

I was the person, who as a kid, felt sorry for any kind of candy wrapper, or scrap of paper and who would stuff the wrapper in a box, between pages in a book, or a coat pocket. I felt sorry for a piece of paper and what would become of it, so imagine my anxiety when recycling programs came about and the great relief of the emergence of fancy storage boxes.

I saved everything. Even receipts from our meals at Disney. I’m not kidding. It was, after all, a great example of explaining how to keep track of Disney Dining Plan Meal Credits, which, at the time was really important.

But, at some point, after the move to our second home, after our kids began to get older, there was a shift, and all those boxes of ‘things’ began to cause me great grief. I would think of the closets, and the piles of books and papers and bags of memorabilia which I just HAD TO HAVE at the time, but would now send me into a panic. My closets were filled, organized, but filled and sadly, excessive.

But, there was a problem, I was physically exhausted from being up most of the night with my son and his nighttime behaviours for fifteen years. Fifteen years of walking around like a zombie during the day, trying to catch a wink here and there, fifteen years of struggling with my weight and mobility and yo yo diets which left me anemic and unhealthy. The struggle was real and the motivation at an all time low. I just had no energy, so all I did, was to focus on what I loved to do, something that fed my soul and boosted my moral. For me, that was anything related to Disney. And then came the internet and chat rooms and social media and cyber-friends and the distraction was massive and it took me away from my task at hand and made and continues to make me very happy.

Over the next few years, we would attempt to clear ‘the piles’, but stuff still had a way of creeping into the house- well I was the one who brought it all in, I’ll take the onus.

I would bag stuff, I would donate it, I would run things over to schools and shelters, but that wasn’t enough and those donations did not even make a dent in the clutter that lurked around my home and that kept coming in. This was all I began to talk about with family and friends, even more so than my chatter about Disney and this is when I knew this was a huge problem that had to be dealt with.

Something else had to happen. I wasn’t getting very far stuffing bag upon bag for donation. My biggest problem, was that there were items that couldn’t be stuffed into a bag, such as thick binders and books and papers and frames and you name it. So, I decided to rent a residential bin and to set a time limit. This, for me, was the only way to get anything done because I paid for the bin and didn’t want to send it back empty.

So there it sat for ten days and with each purge, I felt a release. With each toss, I felt a sense of freedom and more importantly control. As the house began to open up, I felt a growing momentum to let go of all those things which were burdens and as I did, I felt more free and strong. When they came to pick up the bin, I actually felt a pang of panic because of not having the luxury of being able to toss something out so easily.

This had a huge impact on me and I vow, that, because of the immeasurable anxiety the clutter and junk had on me, I vow, to never bring in another item on a whim. I vow to let go of something when I do bring in another item, no matter what. Otherwise, I’ll be in this same position before I know it, and I cannot and will not live like that!

I don’t need knick knacks, I don’t need new pots, or pans, or coffee makers, or irons, or things to stuff in bowls, or containers filled with sand or shells, or even testimonial mugs – I have many, many mugs. Years ago, I paid good money for a few cooking pots and small appliances and they’ll do their magic until their end. I won’t visit those home stores which will tempt me to buy this or that, I don’t need anything. What I have serves its purpose and I’ll never be able to make my house look like the pages of a magazine, or what have you. I’d rather save my money for what truly makes me happy, and that’s travel, experiences and making memories.

Now, I love my empty corners, tabletops and shelves because they give me a sense of peace and make me feel in control. Best of all, dusting is a breeze.

That’s what works for me.

The 20 yard residential bin rental was from “Bin There Dump That” which I thought was at a very reasonable cost, and I highly recommend this company. For me there was no other way.

I hope you remove the clutter from your life, because it’s very liberating and empowering.  And now, I can proudly state that my household ‘To Do List’ for 2018 is finished. For the FIRST time in forever, I don’t have that nagging feeling that I have to do this or that, and I can now focus on my daily and weekly tasks at hand.

I can’t express how great that feels.

Posted in Autism, Disney, Disney Cruise Line, Disney Parks, Disney Social Media Celebration On The Road, Disney Social Media Moms Celebration, Special Needs, Travel, Vacation Planning

Private Cabanas at Disney’s Paradise in the Bahamas

Did you know that when you sail with Disney Cruise Line, most itineraries make one or even two stops at Disney Castaway Cay? This Disney island is located in the Bahamas and offers many excursions (Port Adventures) for Guests of all ages. You’ll find a Family Beach, Adult-Only Beach called, Serenity Bay and a Teen Beach, where you’ll enjoy complimentary beach loungers, chairs and large umbrella. As if that’s not enough, you’ll be treated to a delicious and bountiful beach barbecue!

We love renting a private Cabana for our day at Disney Castaway Cay because it offers peace, shelter and a lot of privacy which is perfect for keeping our son comfortable, enabling him to enjoy a full day on the island. The private Cabana offers, a roomy interior with sofa, chairs, a stocked mini-fridge, face towels, magazines, sunscreens and lotions, a corner change area with curtain, an outer covered verandah with large, cushioned loungers, a hammock, outdoor shower – great for rinsing off the sand, beach loungers, chairs and umbrella, the use of beach floatations, snorkel equipment, bikes, beach toys and a buzzer near the entrance, which will beckon a Cast Member who can restock your mini-fridge with water bottles, juices, fruit and snacks…and yes, they’ll bring you a Konk Kooler, or libation for a cost.

My experience with booking private Cabanas is that you have to book within your booking window for Port Adventures and do so as soon as possible, because they’re popular. I have a few tips (not guaranteed but worth a try) if you can’t book one online. Keep checking back online because someone may cancel. As well, when you board the ship on the first day, check again and every day of your sailing with the Port Adventures Desk. The day you dock at Disney Castaway Cay, catch the Tram to Pelican Point and go to the Cabanas Check-In Booth and inquire again – this is how we scored our very first Cabana the year they became available. Now, as Platinum Castaway Cay Club members, we have an earlier booking window. As well, if you are sailing in Concierge Level, you too, will have an earlier booking window.

As a mom of an autistic teenage boy, I cannot say enough how helpful it is utilizing a private Cabana. My son, enjoys the beach, but will tire easily, so he has the option of resting on the covered verandah on a cushy lounger watching his favourite Disney movies, or swinging to his hearts content on a hammock all to himself and for my motion seeker, that’s the perfect solution!

Disney Cruise Line, where “There’s Something for Everyone.”

Cabana Sign Psarianos

Posted in Autism, Disney, Disney Cruise Line, Disney Parks Moms Panel, Disney Social Media Moms Celebration, Europe, Jackie's Adventures, Special Needs, Travel, Uncategorized

Andrew Soared Sailing with Disney Cruise Line

Who would have thought that we could take our son to Europe? We never, ever thought this would be possible, ever, and we consider ourselves hopeless optimists which has kept us going year after year after year through these chapters called, autism.

We were blown away during our recent sailing on the Disney Magic throughout the Mediterranean seeing our son acclimate so well and I’ll say this – it’s because of our past sailings with Disney Cruise Line. It’s because of the familiarity having sailed all four ships in the fleet (with more to come in the near future). You see, while each ship has its own distinctive features, there are many similarities with the others that create consistency and through that, foster an environment of security. Here’s how they do it:

  • the staterooms all have similar layouts, furniture design and fabrics
  • the basic colours both inside and out are similar
  • the basic layouts of the ships are basically similar
  • the rotational dining system in the three main dining rooms carries throughout the fleet
  • the youth clubs, while slightly varied, do evoke a sense of familiarity offering a welcoming and friendly vibe in all

Andrew can take you almost anywhere onboard. In fact, he quite often leads the way, usually ten paces ahead of us. Yes, it’s become that easy for us. He knows the routine well now. When we open our stateroom door, he knows exactly what to expect and where he will sleep and proceeds to ‘organize his space’ if I may, where he lays out all his comforts from home – his iPad, his tactile, sensory toys to name a few things. It’s all become systematic and seamless. You can see him doing this in the photo below – he’s organizing, as he calls it.

Then, let’s talk about the Port Adventures. We did all of them in Europe because of all the logistical planning and mostly the peace of mind. With Disney Cruise Line you get all of that and much more. On each and every Port Adventure, the guides did all they possibly could to ensure Andrew was comfortable, safe and happy, but most of all, they valued him for who he was and made him feel included. One example, is how Andrew was asked to lead the Port Adventures group straight to the Acropolis of Athens by carrying the group sign. I cannot tell you how his confidence soared right before our very eyes and what great hope that gave us, seeing him so proud and happy. He was all smiles for the entire cruise.

This is what keeps us coming back for more with the cruise line where “there’s something for everyone.”

 

Posted in Autism, Disney, Disney Cruise Line, Disney Parks, Disney Parks Moms Panel, Disney Social Media Moms Celebration, Europe, Uncategorized, Vacation Planning

Disney Cruise Line 2019 Summer Sailings

The blue and white villages of the Cyclades are fascinating mazes of winding streets, passages, and stairs, with weather conditions and sediments that change the sea to an opaque light blue popularly coined, “Mediterranean Blue”. Ah…Rhodes forever in my heart you will be.

DCL Rhodes

In just a few days Disney Cruise Line will be announcing their 2019 summer itineraries, visit disneycruise.disney.go.com to book – it’s REALLY easy to book online and after you do so, you’ll receive email prompts for next steps placing you in full control over your Disney vacation! Be sure to book your Port Adventures through Disney Cruise Line who will afford you the most enriching and immersing experiences ever!

Visit disneyparksmomspanel.com for great Disney Destinations planning tips and advice!
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Erechtheion 2016

My son’s smile is testament to his contentment and pure joy surrounded by history at the Athens Acropolis. The Disney Cruise Line Port Adventures guide made sure he was comfortable and included at all times.