It was our decision to move 1000 miles away from “home” 10 years ago. If we knew then what we knew now, would we have still moved this far?? Probably not. But that’s neither here nor there, well yeah actually it is; but I digress.
Pretty much without fail every time we take a trip it’s back home. See this is where both our families still live. My parents, his parents, aunts, uncles, cousins, and first cousins once, twice, and thrice removed. You get the gist, right?
My kiddos see their grandparents in person maybe 2 times a year. Do I have major mom guilt about this? You betcha. So whenever feasible we all pile into our Toyota Highlander and head out, usually by 5 am at the latest. By “all” I mean, me, the hubs, both our growing sons and our 2 large dogs. The last thing we always say before leaving our property is, “And We’re off like a herd of turtles!” We’ve learned it’s a TON easier and less expensive than trying to book flights, arrange a dog sitter (more on this later), rent a car, pack all our stuff, and still be at the mercy of the airlines.
When you have a child who is very rigid in their thinking, and plans don’t go as expected, or flights are delayed or canceled, they can become a ticking time bomb. Things need to go mostly as planned and expected otherwise we may just be the next airplane video to go viral. Can you say meltdown?
Now, folks who subscribe to the school of hard knocks, don’t believe science is real and are otherwise uneducated on the subject will easily say, “Just let him deal with it” or “He needs to learn to cope”, and so on (insert eye roll here).
My response to this, Karen, is that you will have a whole different tune when your “girls trip” in-flight pre-party is interrupted by my tween sons screaming. Sigh. Yep. We have taken flights, but it is always a risk.
Ok, where was I?? Oh yeah, I was saying, car ride, Highlander,5am.. So we all load in the car, all our clothes are vacuum sealed in Space Bags and stored in the roof cargo box.
All electronics are charged the night before, cords are accessible, snacks are packed, water bottles filled, and a picnic lunch is prepared with salads and sandwich fixings we don’t want to spoil in our fridge. I cannot forget the medications and vitamins we have to coordinate for all 6 of us! Inevitably, it always happens that one of my son’s meds needs refilling when we are away. What a debacle that is, especially for the controlled one.
Back to the dogs. We have two rescues. One is a super-friendly lick monster and the other has major anxiety. She is scared of her own shadow. The rescue team suggested that maybe she was abused. She is on doggy Prozac. When it’s just us, she is great! She is very loved in my home and has a great life. (I should do a separate blog on them later). Anyway, due to her severe anxiety, it is very very hard to secure a dog a sitter. Kennels won’t take her because she’ll have to be dragged in there, and would not play with the other dogs. Not to mention she never easily takes her meds. Usually, we have to open her mouth and shove the meds down her throat. Sometimes she’ll spit it out and we have to go back in with all the nasty mouth goobers of a partially consumed medication. We eventually get there, but it’s not a ton of fun for anyone who doesn’t love this girl to pieces. She never bites though, and sitters have been successful but those lifesavers are few far and between. We have used the pill pockets with some success, but mostly she is on to us and eats around them and spits out the important part. My other dog is very successful with the Greeny Pill Pockets! We stick his vitamin into the pocket, toss it high into the air, and down the hatch it goes. To each their own.
Pitt Stop
So yeah, we bring them along. They do pretty well, we just fold down the second-row seat, buckle them up and they let us know when they need a break. Today we were alerted by what smelt like an anal gland release. This smells like fish oil for those of you who have never had the pleasure. It’s NASTY!
So we stop for gas a few times, grab some coffee, and use the facilities (well the hubs and I do at least), and let the dogs do their business. My kids hold it most of the 15-hour ride if not all of it! Honestly, this is not super surprising, my autistic son refuses to use the bathroom at school, or most anywhere else. This makes for short day trips or the need to abruptly leave a gathering etc. We are hoping to have an OT work with him on this.
Along the way we find that not all of our stops have a 5-star bathroom rating; and I’m a terrible squatter, so when the bodily function doesn’t require a sit, I have the absolute best gadget in my bag of tricks! For those of you without the dangly appendage, this has been a lifesaver. It’s a pee funnel that allows you to stand and pee! You can even buy disposable ones. I got mine on Amazon. Just look up “women urination funnel”. Game changer. 🙌
Almost hourly our youngest asks, “How much longer” or “What’s our eta”? We arrive relatively unscathed, maybe a little tired, and a lottle in need of some personal space, but we arrive on time as expected because we always take the same way, the same way.
Is that fish I smell?
Made It!
🐢🐢 A brief mention about turtles. Whenever I’m driving if we see a turtle about to risk it’s life crossing the road, I HAVE TO STOP to help it cross. It’s a thing. I’ve witnessed too many squashed turtles. Poor things.🐢🐢
Whenever we are presented with a new concept, we shift from unawareness to conscious unawareness to awareness. It is human nature to learn and make connections from the moment we are born, and when Autism entered our consciousness, this was no exception.
When autism entered our collective awareness, a lot was unknown. The scientific and medical community quickly sought to learn as much as possible, and they wanted a greater understanding in hopes of finding a “solution” or a “cure” for Autism. Autism was approached in much the same way as Flu, Measles, Cancer, ALS, Dementia, polio, etc., via research.
Research and development can be expensive, and a few well-intentioned organizations were first on the scene to raise money to aid in these efforts to find a “cure” for this new unknown.
Scientific Method
As a youth, we learned about the seven steps of the scientific process: observation➡️question ➡️ hypothesize ➡️ predict / test ➡️ analyze results / draw conclusions ➡️ communicate results.
Over the years, many theories have surfaced, some helpful and some not-so-much (vaccine theory). These theories continued to go through rigorous scrutiny in hopes of better understanding. Eventually, the prevailing wisdom is that autism cannot be cured but is a disorder in neurodevelopmental processes. I like to think of disorders this way: disruption in the “typical” order of things. IE: Autism is a neurodevelopmental disorder (disorder in brain development and processing). Since our brains have the capacity for unfathomable amounts of control over emotions, memory, senses, thought, breathing, temperature, hunger, and every process that regulates our bodies, you can see how VAST the presentation of Autism can be from person to person. Hence, “if you met one person with autism, you’ve met one person with autism.” This spectrum is large, complex, and overlapping. It can exist in solitude or alongside other “conditions” (didn't love that word). All is still unknown about Autism; we are still learning, studying, testing, and developing theories. But the scientific and medical communities have come a long way. Not a big fan that it is referenced as a disorder, because that has a negative connotation in my opinion, BUT ‘ordered differently than’ may be too wordy for the textbooks 🤷🏻♀️
While our understanding of autism has increased, there also exists old, untested, outdated misunderstandings and disinformation about autism. Some folks hold on to previously held beliefs and have not evolved with the scientific community's findings. For example, some still think vaccines or silver fillings “cause” autism. These theories have been disproven time and again. But, as an ND woman who hates grey areas, I get it; I do. We want answers and reasons because that is way more tangible. It's a place to work from and move forward. However, I’ve learned and accepted that I need to be more flexible in my thinking. I now actively seek answers and solutions. I like to challenge my previously held beliefs on many things. I’m willing to flex; I embrace critical thinking. But I digress.
Over time, efforts in research and development shift as more is known. The funding to support this learning is often through generous donor contributions. Therefore, it only makes sense that a charitable foundation will flex their focus and evolve right along with it as well.
Therapies for autism moved from treatment to “cure” its presentations to more of a way to support those with Autism to live the whole, most meaningful life possible within a “typical” world. Assistance in navigating the day-to-day while honoring their authentic self. To be clear, I am not saying the hard work is over. While we have a greater comprehension, increased awareness, improved quality of life, and more robust disability legislation, there still is a long way to go.
By now, however, most people have heard of Autism - their degree of understanding dramatically varies depending on their place in the awareness process. So now what? Our next logical progression is to move into acceptance.
To me, acceptance is not only acceptance by others (which is super important), but I also see a need for greater acceptance within our own ND community. I've witnessed people within the autism community harshly judge therapies and those who utilize them; for example, this is the case with ABA.
Applied Behavioral Analysis has been highly scrutinized over the years. Rightfully so, for some, this therapy had been traumatic. Early in our information-seeking, Autism was speculated to be something curable, and ABA was initially utilized to treat or fix its manifestations. Consumers of this early ABA therapy share a sense of feeling they were terrible for doing/having certain behaviors and were punished for doing them. For example, a child may have been penalized for vocal stimming profanities in their general education class. Now, we know that stimming may be helpful and therapeutic for some. Current ABA modalities may include redirecting to other types of words, helping to delay yet not eliminate the stimming, or helping them find another way to stim.
As our understanding of Autism has evolved, so have its therapies, as is the case for ABA. It has stood the scientific tests for its usefulness in helping Autistics thrive in this world designed for those who are not. The ABA of today is precedent/antecedent based and individually designed for learning and skill practice. The therapies are based on the client's personal goals and utilize a lot of positive and no negative reinforcement. My son hates how he feels after a meltdown. Together we came up with plans to help identify and manage triggers. To aid in reducing these emotionally exhausting moments. As an alternative to eloping from stressful situations, an ABA therapist may work with the student, school, and/or parents to identify and work through these stressful situations more safely. There are infinite therapies for endless possible needs.
ABA therapy has evolved to more ethical and practical standards alongside our journey of understanding Autism. Look, I hate the idea of punishment; I think it’s ineffective and very damaging to a person. My heart aches for those negatively impacted by this older ABA modality. But I do know that it also has been beneficial for many people, especially as of late. Please be aware of how the negative bashing of this therapy can inherently be damaging and ostracizing. Acceptance.
Identity
Throughout this piece, I’ve used different ways to identify an autistic person. Over the years, I’ve learned how one identifies with autism is very personal. Some prefer to be considered “a person with autism” or an “Autistic person.” A person first vs. identity first. Both ways are correct! Some choose to be defined by their autism, and others don’t want to be defined by it. There are strong opinions on why their choice is the right way, but just as we honor pronouns, or MS vs. Mrs, skinny vs. thin, old vs. mature, or senior, we should honor how one chooses to be identified. If I was speaking of my son and was asked to describe him, I would say he is a funny, intelligent middle schooler who has Autism. He likes this. He has told me he does not want to be referred to as “being on the autism spectrum” or “autistic,” So I honor that. By the way, he loves and embraces that he has autism! He says it adds to his uniqueness and creativity. The only exception is that he dislikes and WANTS to learn how to prevent meltdowns before they start. That part of HIS autism is anxiety-ridden for him. As for me, I tell people frequently that “I have ADHD.” I’m not ADHD; I’m a person with it. My opinion. Again, Acceptance. You do you, boo. If we ever meet, I’ll try to learn and accept your individual preferences and do my best to honor them.
Many symbols are associated with Autism awareness efforts: butterflies, lightbulbs, the color blue, puzzle pieces, infinity symbols (gold and rainbow), and ribbons. Autism symbols are a very personal preference, and some boycott them altogether. Some folks with autism dislike the puzzle piece; they say it associates autism as being a puzzle or a mystery to be solved or put back together. Others feel it represents honoring individuality and is essential to the greater whole. Some prefer the rainbow infinity symbol over the rainbow ribbon. For some, the colored ribbon represents the spectrum of Autism and diversity within. Proponents say the infinity symbol represents “diversity with infinite variations and infinite possibilities” and is the better choice because ribbons are associated with finding a cure. Still, others say the ribbon is a symbol of awareness. Regardless of your preference, ALL of these symbols are doing something positive! Raising awareness and educating!! That’s a great thing!! Acceptance.
Critical Thinking
As mentioned earlier, I embrace critical thinking. Many opinions in the universe and on social media are based on outdated, dis or misinformation, bias, rumors, rigidity, personal experience, money, and more.
An excellent example of this is the rhetoric around Autism Speaks. The dislike for that organization is palpable. Yowzers! They were one of the first organizations to raise funds for research and development around autism. However, they flexed and changed alongside the scientific community as new theories developed. They are associated with the “finding a cure” Vaccine Theory, ABA. They are accused of not employing folks with autism in their organization or decision-making process and keeping too much of the donations. This is an excellent opportunity for critical thinking. Read about who they are NOW. What financial interest / personal gain do those who share this rhetoric have in spreading this information? Are they competing for dollars? Make it a habit to Look at credible sources for info on ANY organization. Did you hear something negative? Research to learn if this is factual or not. Read the ABOUT sections on websites. Go to the BBB or government resources to get accurate information. Regarding Autism Speaks - I encourage you to visit their q&a section and read it in its entirety. https://www.autismspeaks.org/autism-speaks-questions-answers-facts . I am not advocating for or against any specific organization. Boo, do you.
Acceptance Within
As an ND community, we cannot expect awareness, understanding, and acceptance from others without embracing and honoring the differences between ourselves and each other. The evolution from unawareness to awareness of Autism has been incredible! While fraught with misunderstandings, trial, and error, it has evolved nonetheless. It’s part of our history and our story. We cannot grow as a people without making errors along the way. When we don’t evolve, shift our thinking, and learn from our mistakes, the most significant problems live.
This month and every month, keep honoring your story but appreciate the differences in others. Your experiences are your own. Spread awareness and acceptance by example. Use whatever symbols, if any, in these efforts. Encourage others to donate to ongoing research and development. Seek whatever therapies you feel are right for you. Lastly, honor the choices of others in their Autism journey. Embrace your own decisions in life, and advocate for yourself. Learn from your own trial and error. Accept who you are, challenge and grow to recognize the differences in others but remember we are better together. Accept.
You will see me using all symbols as they all make me smile. They are founded on creating a loving, accepting, and supportive world for my son. I'll continue to be open to new ideas and flex as needed to help assist my son in his journey. I'll continue to think critically and appreciate the fact that I can. Finally, I vow to understand, respect, and accept the journey of others.
Note: I sat down at 7:30 am to jot my thoughts down about upcoming Autism Awareness Month, possibly include it on a local FB page I manage, and after 9 hours of perseveration and hyper-focused ADHD later, I ended up writing an overdue blog post. I know I had many other things I should have been doing, but as it was, my ADHD presentations were full-throttle that day.
I welcome your thoughts, but as my child reads and contributes to this blog, any unhelpful comments may be removed. I honor and accept your right to an opinion; I may not allow it to take space in this place. We are all on a journey; let’s be supportive; we are better together than we are alone.
Best. -McMomma
4/16/23
I stumbled on this infographic by Autism LevelUp. It’s pretty helpful!
As an ND person and mom of an autistic son I would reiterate that preferences are just that, a preference. Personal preferences can very from person to person. IE; Identity first vs person first or a blue puzzle piece vs a multicolored infinity symbol . Acceptance.
For us to take a family vacation to any big park like Disney or Universal was never on our radar as even a possibility. So when my 11-year-old autistic son expressed an interest in going to Universal Studios, we took it very seriously. He knew from conversations with others that it would be hot, crowded, loud, and filled with roller coasters and lines. All of which could set him into a meltdown faster than you can say Hogwarts! Nonetheless, we discussed it as a family and began to plan.
Our travel agent told us about the Attraction Assistance Pass which would allow all of us to utilize the express pass line at set times. This is huge because Dex and waiting don’t mix.
We planned to stay on the property at Lowes Sapphire Falls so that it would be easy to hop on a water taxi and come back and forth if we needed to take a break from the park. We also decided to do the 2 parks 3-day pass with 2 free days so that we can visit in short increments without feeling rushed or compelled to “get our money’s worth”.
Additionally, I went to Pinterest to find other bloggers who gave tips on navigating the park(s), the best places to eat, and ways to save money. What I could not find initially was first-hand information on navigating the park with an autistic child. *Since my first publishing I have discovered Autism at the Parks – it’s worth checking out!
So here I want to share some of my experiences with you and lessons learned. I must acknowledge that I know Autism presents differently in every person. My Dex is a bright, Minecraft and Lego-loving, sociable, empathetic kiddo. His “big feelings” presents from happy and calm to presenting to being chased by a Jurassic park dinosaur in an instant. It’s not always easy to catch but there usually are warning signs. His meltdowns can include mind-numbing screams, elopement, crying, gritting teeth, throwing objects, hiding, or just blatant defiance. These daily swings have led to his older brother, our pets, and sadly other school mates, to walk on egg shells. Additionally, my husband and I have developed a bit of hyper-vigilance. I thank god he is such loving kiddo so that most others can see the amazing in him and move past his scary meltdowns.
Tips
Tip #1 Obtain Known Traveler Number
If possible register in advance for a Known Traveler Number. This will allow you and your kiddos to coast through security with a TSA Precheck status to avoid long lines and the removal of shoes, belts, and coats (usually). It’s worth it and lasts for several years.
Tip #2 Flight
LET THEM SLEEP IN – take a late morning or early afternoon flight. Ask the airline gate attendant for pre-boarding to avoid the line and crowds getting on the plane. If flying Southwest this will also ensure you can sit together on the plane. Bring ear plugs, water, a light blanket, a book, IPad, or other activity to keep you child busy.
Tip #3 Arrive at 4:00 pm
Plan to arrive at the hotel around 4:00 pm. Most resorts don’t allow you to check in before 4:00. We were unaware of this fact and had to sit around waiting for our room to be ready. This was stressful and was a Tick in the ole’ meltdown countdown.
Tip #5 Just Relax on Arrival Day
Use arrival day as a day to unpack, get to know the resort, and maybe use the pool. Use Instacart to order some groceries and snacks to keep on hand. Use this time to PLAN your first day at the park. I cannot stress enough how important this part is. Dex was so excited the day we arrived and wanted to see Harry Potter so badly that we decided to go to the park and just wing it a bit. This was a terrible idea. We were NOT prepared to deal with anything the 2 hours there threw at us. It was a disaster.
Tip #6 Pick Up Tickets at Your Resort
If staying at a Universal Resort chances are you can collect or buy tickets there. This will alleviate another line to stand in at Will-Call. While you are at it, get a couple of lanyards to hold them in. I recommend bringing 2 in case you split up! Depending where you stay you may have early entry for certain attractions like Harry Potters Wizarding World.
Tip #7 Get an Attraction Assistance Pass
After you have collected your park tickets stroll over to guest services and ask for an Attraction Assistance Pass. Unlike Disney this pass can only be obtained on site. This pass allows you to make a “reservation” in person with a return time. When it is time to return you hop into the express lane. There is no fee for this accommodation. Obtaining this pass was a fairly easy process. I explained that Dex had Autism and we heard from our travel agent that we can have a line accommodation. They asked what would happen if he had to stand in line and I simply said “meltdown”. This is the truth, and this pass has been a lifesaver. I recommend carrying a pen on you because the “reservations” need to be made at the attraction entrance by an employee. When you return they need to sign off on your pass as well.
Attraction Assistance Pass
Tip #8 Use your Concierge
Ask your concierge for the water taxi and shuttle bus contact information. On our first day after walking for miles in the heat without a plan, we decided to head back to the water taxi. It wasn’t until we got to the dock that we learned that the taxis were temporarily shut down due to lightning risk. We then had to walk another 15 minutes up a hill and many stairs to grab a shuttle. This area was confusing as well. The shuttle to our hotel was MIA so another hotel took pity and absorbed several of us into their route. In inclement weather call the concierge to see if the water taxi is running before trekking over to the dock. This most definitely was a few more ticks on the meltdown countdown. Make a plan on what you will do in case this happens so the unexpected change isn’t so destructive. Also, I was told by the water taxi folks that in inclement weather you can ask any security guards in the park if a “10-13 White” has been issued.
Tip #9 Confirm Early Entry Location
Before you head out of your hotel inquire about which park (Universal or Islands of Adventure) will be hosting the early park ENTRY if you are trying to take advantage of this resort perk. Believe it or not, it’s a bit of a walk from the entry to Universal Orlando to the entry gates to Island of Adventure and the whole point is to be there early, not waste time walking in the wrong direction. Tick…
Tip #10 Split Up
If visiting with multiple kids, it may be advantageous to split up at times. Our oldest son gets very frustrated when his brother melts down in public because it impacts his day too. A respite from meltdowns is good for the soul. My husband and I agreed to split up and each takes a kiddo on multiple occasions. In this way when Dex wanted to head back to the hotel and his older brother didn’t, or vice versa it wasn’t an issue, they each got what they wanted. On many occasions, we’ve left events, parties, or visits early for Dex, and we’ve seen the impact it does have on Liam emotionally. I recall a hiking trip we took and at every new climb, Dex screamed and cried. His brother just hiked ahead and didn’t talk most of the day. It wasn’t fun for him. Liam is at the stage where he’s mad and resentful for these “disruptions”; he doesn’t fully grasp Dex’s Autism yet. He will eventually 💙.
Tip #11 Make a Plan
Planning which rides and/or attractions on particular days and times, even the route you will take to get there (with some built-in flexibility) will set expectations for the day. By the third day I started using Google maps to plan my routes within the park. Step by step directions; yes please!
Walking aimlessly without a plan on that first day to the park was a disaster! We essentially ended up doing nothing but walking and getting frustrated. Dex does best when he knows what to expect. For example: In the AM one day we took advantage of early entry to The Wizarding World of Harry Potter, we knew that Harry Potter and the Forbidden Journey 4D ride was popular so we planned to beeline over to it and ride it first, second we planned Butterbeer, and then another ride while in Hogsmeade. All of that was a success! We then were planning on taking the train over to Diagon Alley to ride Harry Potter and the Escape From Gringotts. But My oldest son spotted the menu at the Three Broomsticks and since this wasn’t in our original plan Dex had a meltdown in line, screaming at the table, and an argument between Dex and his brother, resulting in him and I abandoning the remainder of the morning schedule. We should have seen that coming, we knew better. In retrospect, Dex and I should have split from my husband and Liam to continue with the plan. Lesson learned. By the way, the breakfast itself was super yummy. We had the traditional English breakfast and the pancake breakfast. Portions were big and were shareable.
Water Taxi! Dex asked to ride the Incredible Hulk Coaster!I was so proud of him. I got nauseas, he loved it but wanted to go back to our hotel afterwards. He needed to process, I respect that. Me too Dex, me too. In line at the Three Broomsticks. Dex was showing signs of elevation in this photo. Liam is grinning from ear to ear in anticipation of the yummy goodness he was about to consume!
TIP #12 Download the Universal Orlando Resort App
For us, we found the Universal Orlando Resort App to be helpful for current attraction wait times, closures, and descriptions; dining options, menus, and contact information for reservations. It has features for scanning in tickets and passes but we found this to be clunky and glitchy. Additionally, the App needs to be updated because Universal no longer has dining plan options and this is still included in the app. I would have LOVED for it to have a more robust step-by-step direction feature like google maps built-in, for my family, this would have been extremely helpful.
Tip #13 Consider a Personal Tracker
Elopement, wandering off, abduction, or separation by large crowds is always a concern in my mind. We were trying to get my son’s Verizon GizmoWatch reconnected but the model we had was too old for the updated software and we could not get a new one in time. Booooo! I love this basic smartwatch because it has a GPS app built in that you can track on an app; automatic call answering if they don’t pick up; texting and phone calling to a limited number of pre-approved persons. In case of separation, it could lead you right to them. The plus for me is the relatively low cost. Additionally, here is another review by Safewise on the Verizon GizmoWatch❤️ We also looked at the AngelSense Tracker. This can be put into one of their watch bands, armbands, or clipped into clothing. It is very cool and worth checking out! In the end, we didn’t need a tracker because Dex was always wanting to stay close and hold our hands. This was a nice treat for the hubs and me, so we soaked it up! 💙❤️
Tip #14 Don’t Forget to Appreciate the Little Things
Sometimes it’s the unplanned family moments that bring the most joy. Pool time was where we had some of the best smiles and family time.
Hallway while in line for the Amazing Adventures In Spider-Man 4D Ride. It’s loud in this building, I should have grabbed the ear plugs.Hubs and Liam in line for the Amazing Adventures in Spider-Man . We were thankful for the air conditioning and fun distractions while waiting to experience this cool ride. Success!
At this time we are not being paid for our opinions or recommendations.
Adventures in Autism 