I’m blogging over at The Mommy Spot Tampa Bay today! Here is the link to check out my post: A Day in the Life of an Autism Mom http://www.mommyspottampa.com/2017/04/a-day-in-the-life-of-an-autism-mom/ I hope you enjoy!!
Not every worthy charitable cause gets an entire month dedicated to raising awareness. ‘Worthy’ being a completely subjective word because realistically speaking if it doesn’t affect your daily life or someone you love dearly, you are fairly unlikely to deem something worthy. What is quite possibly one of the largest medical epidemics of our time, Autism however, is very likely to touch your life in some way over the course of your lifetime, which is only part of the reason you should care about Autism Awareness Month.
The statistic for an Autism diagnosis in the United States is 1 in 68. Think about how many people you went to high school with or how many people were on your soccer team or how many people were in your fraternity or how many people you see at work on a daily basis. Even just going to the airport and boarding a plane or going to the mall. How many people are you going to encounter on any given day? I will bet on average that it’s greater than 68, yet many people still don’t think it’s important to know how to be helpful in situations that involve people who have Autism.
There are many reasons I’m thankful for Autism Awareness Month…Here are are a few that also present the case for why you should care too!
- Different Not Less is more than a hashtag. Knowing what to say or sometimes more importantly what NOT to say could really be an investment in not looking like a complete A-Hole in future situations. So maybe you won’t directly interact with someone with Autism, but at 1 in 68, you’re likely to encounter someone who does. I remember when we went out to dinner with another couple and the gentlemen (I use that word for referential purposes, not because I think he actually was one) stated that he thought Autism was evolutions way of implementing some kind of ‘survival of the fittest’ and that the gene pool was trying to weed these individuals out. I am not kidding. He actually said that. He obviously didn’t know our son had Autism at the time, but could you imagine if I were say his boss or a proposed business client?! He would have most certainly lost out on some kind of opportunity. Thank goodness for him I was just a “friend”. (I don’t have to tell you that was the last dinner we had together.) I’m not saying people aren’t entitled to their (in that case – stupid) opinions, but knowing that individuals with Autism are just as important as the next life and can offer many immeasurable contributions to our society are great reasons for Autism Awareness Month. You should care because being a compassionate person who is respectful and embracing of others differences is an essential quality of being a decent human being and also makes you extremely attractive.
- The invisible disability. I have been asked if those stories that people read online, you know the “Open Letter to the guy giving me a dirty look in the Target line”, do those really happen? Well, just yesterday I was cashing out and my son was having a complete stage 10 clinger melt down because I asked to borrow MY phone (which he was playing a game on) to scan my coupon app. So the years of ABA training says to ignore said “junk” behavior and make him “earn” the use of the phone back. I was killing it, winning at mom 101, feeling pretty good about the fact that I wasn’t caving in during this epic melt down with 4 people in line behind me, but when I told him that he would have to “earn it back”, the cashier rolled her eyes, circled something on the receipt and said “well I don’t blame you there”. I tell you this story not to prove that these scenarios do in fact happen and with quite regularity, but because if the cashier had been educated just enough to know that maybe this isn’t just a temper tantrum from a bratty kid wanting what they can’t have and that it’s actually an Autism moment that combines cognitive impairment, sensory over stimulation, and a non-verbal child transitioning to relinquish something that is the only thing holding them together at the moment, maybe she could have been more helpful. Educating the public that this is an invisible disability is vital and that sometimes what you think is happening in front of you is really something entirely different that only merits minding your own business or to tell the parent they are doing a great job. Snarky remarks just make you look ugly plus they are completely unnecessary. The old adage ‘If you don’t have anything nice to say, don’t say anything at all’ would be good to employ here. Be smart, not judgy.
- You like your money and you probably want to keep it right? Maybe you think Autism Awareness Month is about raising a bunch of money for research. Why should you donate to a cause that you have nothing to do with and doesn’t affect you in any way? Guess what. It most certainly does affect you AND your pocket book. Let me tell you how. Let’s just say we don’t do any research or fund any project directed at helping individuals with Autism reach their highest level of independence. Fine. Now all of the 1 in 68 kids are grown up. None have the skills to live on their own so they are completely dependent on the government to pay for their housing, therapy, medication, assistance in every single day to day activity from going to the bathroom to feeding themselves. The government would go completely broke before you could blink. So they will have no choice other than to raise the taxes of every single American citizen to pay for these individuals to simply exist. You can probably say goodbye to Social Security while you’re at it. Obviously no one wants that. A lot of individuals with Autism have a really great shot at living an independent life if given the early intervention therapy and skills they need to do so. Their potential is so incredibly high, much higher than they are often given credit for. So if we give a little now, we save a ton in the future. I’m not very good at math, but the fundamentals say the more effort we give now, the better off everyones retirement is going to be and I’m looking forward to sitting on a far away beach someday.
- Siblings: My Brother’s Keeper & The Community. The harsh reality of families with an Autism diagnosis is that the siblings of the individuals with Autism will more than likely be their guardians after the parents pass away. We live in an era that has a lot less of a sense of community than we used to. Just a few decades ago everyone on the street would have pitched in to see that Sam was taken care of and checking in on him where as now it will probably isolate Sam’s siblings because of his disability. If the community we lived in had a better understanding of what Autism is and how to interact with not only individuals with Autism, but how to support the families of them, then everyone would feel more comfortable and everyone would be happier…leading directly to World Peace of course.
This month also means (to me) celebrating the teachers and therapists who work tirelessly for our children. Can you imagine having a career that you go to every single day, underpaid, working yourself thanklessly to the bone for no visible improvement in your product other than the hope that one day after countless repetition that some kind of progress is made? That’s maddening! Yet that’s what the teachers and therapists of special needs students do each and every day. So I like to take this month to celebrate the magical unicorns for which they are.
Speaking of magical unicorns, the friendships I’ve made along this journey are ones worth celebrating as well. Ask any number of people in the Autism community what Autism Awareness Month means to them and you’ll probably end up getting as many different answers as you would have if you had asked what did you eat for dinner last night? I asked some of my fellow Autism parents what this month means to them and here are some of their answers:
- It’s a bittersweet month. It’s nice to see the exposure, but Autism Awareness isn’t just a month for us, it’s permanent.
- Honestly, not much. There are more Facebook posts about it and people ask us to participate in walks and races…all the things we avoid because we have a child with Autism, but I hope it will make people think about it and help research in the long run.
- It’s one of those things that unless you are personally experiencing it you won’t want to or can’t understand it completely. It’s hard to bring true awareness to something with such a broad spectrum with so many unanswered questions. Especially how does it feels to those actually living with it since most of the individuals have a hard time expressing what it’s like in their world and even if they could express what it’s like, because each case is so different, so would be their experiences and the experiences of their care givers.
A very famous Army General (who will remain nameless) once said “One of our doctrines is: Live your values, and there are two arguments for living your values. One is you have the moral obligation to do it. It is the right thing to do. If you don’t buy that, you have a practical reason to do it, because every time you violate it, you pay for it.” Perfect examples for this post. So as we enter Autism Awareness Month this year, maybe we can come together not just for this month, but really try to be an active member of the community that we all are a part of. Thinking about how can we help each other and how we can be stronger and better together than we ever would be apart. Or because you want money to retire with someday, you want to be a contributing member of your community and you really do want world peace. All worthy reasons to support a worthy cause.
A lot of people will write about their birth story. The documentation of a life event that will never be recreated the exact same way again. There is power behind that sentiment. The bonus that comes along with those birth stories is that it gives others, who either won’t or haven’t yet gone through that, a chance to read about some of what it feels like or the possibilities ahead. This got me thinking. Just as no birth story is the same, no diagnosis story is the same. Maybe this story will make someone who is wondering if they should call a little more comfortable doing so. Maybe someone will find comfort in the fact that someones story is similar to theirs. Maybe it will give them the courage they need to start the journey. Maybe it just makes some feel a little less alone. All worthy reasons, in my opinion, to share our story.
My son, R, was born December 13, 2011, seven pounds and eleven ounces of pure deliciousness! I was ten days past my due date when the doctors induced me. My pregnancy had been pretty typical with only a fetal heart arrhythmia that corrected itself before I was even full term. My labor was just as typical except for the continuous vomiting throughout (sorry for the TMI). I was lucky and had no postpartum depression and an extremely involved husband. We went to all of the typical pediatrician appointments through the first few months and R was developing right on track.
It wasn’t until when he was around six months old that I felt like something wasn’t quite right. I was still getting the updates in my email from the baby center that tracked your baby’s growth every week from conception through toddlerhood and I started to notice he wasn’t hitting every single milestone. It’s not like he was behind, after all he was only six months old, but still something felt off. I asked the pediatrician about his development and he reassured me that there were only a few things he wasn’t doing yet and boys typically developed on the later side of things. (This would be a sentiment I would hear a lot from family and friends.) He was one of the leading experts on Autism and we just happened to like his other philosophies which is why we picked him for our pediatrician. Even though I knew if anyone was going to pick up on something it would be him, I continued to ask if there was any tests we could do or evaluations we could run. He would always say, “if he’s not doing at least one new thing by the next appointment we will talk about it.” Sure enough he would be doing just one more thing. As time went on the further behind he became.
I called my cousin to chat about some of my concerns. She is my go-to person for all things parenting because her boys are a couple years older than R and she always gives great advice. I had brought my worries up to her before, but very briefly and casually. I couldn’t tell if it was my old hypochondriac tendencies breaking through or if there was actually something to be worried about. This time she told me “I think deep down you will know”. The reality was that this did feel different. I did feel like I “knew”. She had a friend who had her kids evaluated by our county’s early intervention program and she said she would send me the phone number to call. “Don’t feel silly for calling, at the very least it will put your worries to rest if it’s nothing and it’s free so there’s no reason not to call!” she said and she was right.
When I got the phone call back from the early intervention department called Early Steps, they were slightly surprised that the call came from the parent as it is usually initiated by the pediatrician or the school. She scheduled our evaluation, to be conducted in our home, for a few weeks from now. This was only to determine if he qualified for the larger, more formal evaluation held at University of South Florida (USF). The anticipation wasn’t so bad because even if she agreed that he wasn’t meeting all of his milestones I figured there was a pretty clear game plan for catching him up which was all I was looking for.
The evaluation was pretty informal with her going back and forth with asking me a bunch of questions while giving R a series of instructions or toys and seeing how he would respond. It took around two hours. At the end she gave me his preliminary scores. Out of the five categories he only passed one. One. Right. I knew he was behind, I was the one who called after all, but even with that it was still a punch in the gut. She told me she would call within the month to schedule his formal evaluation at USF and to plan to be there for around three to four hours.
By the time his formal evaluation rolled around (they have 30 days to call to schedule and then they have 60 days to complete the evaluation) R was around 18 months old. We learned we were expecting another child at the beginning of next year so even more than before I wanted to know what we were up against. We walked into the large building on the campus with a giant waiting room. It wasn’t super busy so the room seemed even bigger and even more intimidating. They called us back to the evaluation room. Sterile like a doctors office but with a couch and a small play area on the floor. There were five people other than us in the room, all there to evaluate a different area. Like the last evaluation, they asked a series of questions, but this time they made it clear that they would try to get R to do things and ultimately even if I had told them he could do them, if he didn’t do them that day in front of them that they would have to say on their report that he could’t do that skill. Along the way most of the therapists would comment on the fact that R would pass a portion of the test category and not the other so they couldn’t give it to him as a correct response. They also mentioned at a later date we could test him for Autism. At the end of the evaluation they gave us their preliminary report. Global Developmental Delay or GDD. As with the last evaluation he would pass one out of the five areas of development. From here they set up our Individualized Family Support Plan or IFSP and told us to expect a call from our case manager to set up once a week, in home visits, from what would be our new (and first of many) therapists.
In the couple months after the big formal evaluation, while we were waiting to start in home therapy a lot had ensued. R had to have surgery to repair a hernia and he started preschool. I also brought our results from USF to our pediatrician. He was nothing short of shocked, but at the same time didn’t seem thoroughly convinced. I asked him who I could bring R to for an evaluation that he would respect the opinion of enough to feel certain of where we stood. He suggested Dr. Danielle Sutton, a leading psychologist in our community and published author on the subject of Autism. I made the appointment with her that day.
Dr. Sutton came to our home to conduct her evaluation in hopes to see R in his environment to get the most accurate picture. She was the perfect combination of beautiful, spunky and professional. During the evaluation she used the words “perplexing” and “interesting” a lot. I wasn’t sure if that was a good thing or a bad thing. Like the therapists from USF, she also said he tended to pass a portion of one test and not the rest. She remarked that she hadn’t quite seen anyone like R before. Again, was that a good thing or a bad thing? On the one hand it gave me some hope that maybe we weren’t dealing with Autism and maybe it was something less intimidating, but on the other, if there is going to be something wrong with your kid you want it to be the textbook case. In the end Dr. Sutton would give R the diagnosis of Autism Spectrum Disorder or ASD with the hopes that it would allow him to receive the services he needed to reach his fullest potential, but as she would put it, “He meets the criteria for the diagnosis, but I’m just not sure in my heart of hearts that’s what we are dealing with.”. I wasn’t quite sure what to tell myself. We decided to keep the diagnosis to ourselves and to his teachers. If he was so different than any of the other children she had seen maybe it would just take some therapy to catch him up and he wouldn’t need the Autism label after all. I wouldn’t want to tell everyone he had Autism and then have to go back later and explain that he didn’t.
Dr. Sutton suggested we have R evaluated for Sensory Processing Disorder as well as a full speech evaluation. A woman named Dana Johnson, an Occupational Therapist, is who she suggested to take him to for the Sensory Processing Evaluation. Dana came to our house to do the evaluation and explained SPD (Sensory Processing Disorder) to us. She was petite, but moved like a gymnast and had a soft, but firm and knowing tone to her voice. I had never heard of it before, but the way she explained it not only made a lot of sense, it sounded exactly like R. After her evaluation she also gave him a diagnosis of SPD. She suggested seeing him once every other week only because her office was 45 minutes away from us, but also getting him started with as much occupational therapy or OT as possible. Marci Cheeseman was Dr. Sutton’s suggestion for speech. Really it was clear by the lack of words R was saying that this was a no brainer, but we had to be formal about the evaluation. Marci was a firecracker. I had and still have never seen anyone work for a word as hard as she does. She truly feels, with great depth, the set backs and successes of her clients and that is something very special in a therapist. She had room in her schedule to start seeing R twice per week.
We took all of the evaluations to our pediatrician for his review. I definitely felt a shift. Finally I felt like he respected what I was saying and that my concerns were a valid thing to look further into. We started on supplements specifically designed for individuals with Autism. We were looking for any kind of cognitive improvements. He, along with everyone else, was still slightly baffled by R. While he made great eye contact and was very social in the sense that he seeks attention, the cognitive ability was clearly lacking. He was now well past two and still not talking at all. We had welcomed our second son, C, in the last month and still trying to get our footing in this new world of therapy. Our weeks were filled with home and office visits from therapists, going to school and caring for a newborn. When R’s school was less than thrilled to accommodate therapists coming there to see him, I knew I had to move him so we could maximize our time.
His new school was amazing. They welcomed any and all of our therapists to come and work with him either within his class or off on their own. They were extremely helpful and accommodating. R would have a therapist come to school every day and once a week we would make the 45 minute drive to see either Dr. Sutton or Dana. After school we had early steps and more therapists. I made it my full time job to see to it that he was getting everything that he could to reach his potential. Dr. Sutton at one point asked me how long I expected to keep up this pace. I didn’t know the answer to that, but at the time I almost felt like there was a deadline. I wanted to “mainstream” him by kindergarten so that was my goal. It was all going very well for a couple months until R’s behavior started going off the tracks. Every single time C would cry, R would loose it. When I say loose it I don’t mean your typical middle of the isle tantrum at Target. This was different. This was extreme and pretty soon he just started lunging at C. Now I was worried.
Life was starting to feel really hard and I wasn’t sure when, if ever, it was going to get better. If I wasn’t at home I was either driving in the car to a far away therapy appointment or researching something I could do to help R. When I was at home I had to have either a sitter or my husband with me because it got to the point that I couldn’t have my two kids in the same room or they would literally try to scratch each others eyes out and the screaming never, ever stopped. T, my husband, would sit in one room with one and I would sit in the other room with the other and we would switch. All day. Every day. For months. I remember calling a friend asking her “How long do you think a person can listed to screaming (either from the baby or from R being upset about something) before your brain chemistry or muscles start to die?”. I couldn’t go anywhere because I was busy with therapy and being at home frankly sucked. At one point a friend pointed out that I was like being around a live version of Flight of the Bumble Bee. The times I did get out I would end up way too intoxicated as a way of self medicating. This was going downhill fast. I was and had been seeing a therapist for a while about another situation and she was helping me deal with this too, but it was a lot to handle.
Our speech therapist Marci invited me to have dinner and drinks with a couple of her clients/friends. Of course I jumped at the chance to get out of the house. Like another mom whose children all have autism once said, “If Freddy Kreuger asked me over for a cup of coffee, I would have happily gone.”. I met two women that night that would completely change my life. On was Jamie, a spunky petite blond from Tennessee with an accent to match and that seemed to like saying the F word almost as much as I did. The other was Tina, a tall brunette whose perfect skin and lips you want to steal and a fellow foodie whose kids were almost the same age as mine. I couldn’t remember the last time I laughed that hard or felt that much of a normal human being. These women not only got me, I now knew what it meant when people referred to others as their tribe. Equally as important, Tina said her kids were acting the exact same as mine just two months ago and she tried ABA (Applied Behavioral Analysis) and it’s changed her life. I didn’t know what ABA was and I’m not sure I believed anyones situation could compare to the special kind of hell my house looked like behind closed doors, but she assured me it did and it worked. I would have tried anything at that point so I called to make an appointment the very next day.
ABA was like learning a new language immersion style. Think of everything you think you know about how to discipline a child and do the opposite. Ignore “junk” behavior, don’t tell them to stop their bad behavior, first then charts, acronyms like SEAT and data collecting. Lots of data collecting. They made it clear it would become worse before it got better. Are. You. Kidding. Me? What the *&^$ did I just sign up for? However, I was willing to try anything and you know what? Just like Tina had said, around two months in things started to change for the better.
Just as I felt like we were making headway with all the therapy, we made the decision to take R out of his private preschool and place him into our county’s full time early intervention program Child Find. This program starts at age three and goes until the child goes to kindergarten. They had a 66% success rate defined as children who enter the program then go on to be in a mainstream kindergarten class. We would still do therapy after school with our private therapists, but this would be a full time program that he would receive therapy all day as well (and not at our cost) and seemed like our best shot at getting him mainstreamed which was still my goal.
I think this is when my husband really started to begin his journey to go through his stages of grief. At the end of the day a diagnosis for your child of any kind is a loss of some sort. There had been so many people along the way tell us that R was unlike anyone they had seen and they were certain he would catch up. The fact that he is so social is what throws people off especially when you’re only around him for a few minutes, it can be hard to see. He was now in a class with all his peer having some kind of disability. Seeing your child walk with their class that really looks completely different than the rest of the classes is hard at first. It’s not what you had envisioned when your drop off and pick up your child. R would spend the spring session there and the following school year.
Spring of that second year I was really disappointed in the progress or lack thereof that he had made. I asked our pediatrician to run a genetic panel of tests to test for every single genetic abnormality there was to see if there was a chance this was more than Autism. The tests all came back negative. I finally felt like everyone agreed it was Autism (and nothing else) we were dealing with. I started looking to see what my other options were. I could apply for a different school with the same program or I could move him to a school specifically for Autism. It was a hard call, but I couldn’t in good faith leave him in the program another full year knowing he didn’t make much progress if any the previous year. I decided that if I had to move him every year to make progress then that’s what I would do. In my opinion, you’ve gotta make sure we are always moving in a forward direction.
So this is where we are now. R just turned five. He has Autism and goes to a school specifically for children with Autism. He gets along with his brother much better after almost two years of ABA therapy. We can all be in the same room now! Yay for miracles! We still do private therapy most days of the week after school. He has some great receptive language skills, we are still working on the expressive part. Most of our friends and family have been great, learning how to be supportive of our modern family. I’m not going to be one of those people that say Autism is a blessing. Autism is really hard and it’s not what we signed up for. It consumes your entire life. There are days (especially the ones that include the smearing of the poop-yes that happens) that I still don’t know how I’m going to do this forever, but those days are less frequent as the years go on. It does get better. I’m gonna say that again, IT DOES GET BETTER. It has brought me beautiful friendships and experiences I wouldn’t have otherwise had. It has taught me to keep the big things big and the small things small. It’s taught me that this journey is a marathon not a sprint and you have to take good care of yourself along the way. It has taught me to embrace change and uncertainty in ways I didn’t know I was capable of doing. Speaking of capable, it’s definitely made me realize I am capable of much more than I ever imagined.
After trying different routines, schedules, places and passes we are starting to figure out what works for our family on our weekends at Disney. Even thought there were lots of firsts on this trip, it was actually the most successful and seamless trips we have had!
We left early Saturday morning right after breakfast and drove straight to Magic Kingdom (minus one pit stop for C-does everyone else drive like a race car driver when their toddler has to pee?!). The weather was beautiful, mild temps and not a cloud in the sky. We got super lucky and parked fairly close to the handicap section so we were able to just walk to the fairy/monorail entrance. We decided to take the ferry thinking the kids might think of it like a ride. They were definitely interested and curious. That was their second time on a boat and I think they liked it fine enough. We had our MagicBands mailed to us so we were able to just go straight to the entrance line. From the time we parked to the time we got through the entrance it was about an hour. I didn’t realize it would take so long so we missed our first FastPass time, but I was able to reschedule it for later in the day.
When we walked into the park we stopped to take a photo in front of the castle and by the time we turned around a cast member told us if we just stopped where we were we would see the parade coming by with a prime view! C just about lost his mind when he saw all the characters up close and R didn’t do so bad either. We headed over to our next FastPass for Winnie the Pooh that was coming up quickly. C couldn’t contain his excitement, dancing his way through the FastPass line. Sitting in a giant honey pot, twisting and gliding through the Hundred Acre Woods with Pooh Bear and all his friends was a great way to introduce the type of rides we would be going on that day.
We stopped by It’s A Small World on our way to our lunch reservation to get a DASPass (Disability Access Pass). This is where I would change something for next time. I pre purchased a parade dining package that basically gives you premium seating for the big parade at 3pm with a dining reservation at Tony’s Restaurant (Lady and the Tramp themed). I made the dining reservation for when we usually eat lunch at home thinking that it would keep us on our normal schedule, but because I did that we ended up doing a lot of back and forth from the front of the park where the restaurant and parade are and the back of the park where the rides were. Next time I would make the dining reservation for just before the parade so we only had to make one trip up to the front of the park. There’s plenty of shopping and treats at the front of the park that even if we finished lunch early before the parade we would have things to do.
Lunch at Tony’s was great! They had an awesome gluten free menu as well as a full beer and wine list. The walls were adorned with Lady and the Tramp memorabilia, the food was great and the service was even better. We decided to do a sit down lunch this time and have room service for dinner when we got back at the hotel. The kids were great in the restaurant and I think it helped that they had food they really liked. Watching C slurp his spaghetti noodles was the highlight of my week! Cutie!
We went to Peter Pan’s Flight and It’s A Small World while we waited for the parade to start. On our way back to the parade we stopped by Little Mermaid to get another DASPass. Because there was only one time for the big parade that day it was pretty crowded. We got premium seating, but if you got there a full half an hour before the starting time (which is what our package requested), you could have pretty much had great seating wherever you wanted. I wouldn’t do the dining parade package again, but it was nice to try. We all loved the parade. I especially loved the part when a woman ran across the street between two of the floats and one of the fairy godmothers from Sleeping Beauty came over and without breaking character, voice or smile, told her “I saw what you did. That was very bad. Don’t ever do it again”. I died laughing. You tell her Merryweather! After the parade we went to Dumbo. Super cute and I’m so glad they have two sets now. We finished with Little Mermaid and decided to head back to the hotel. In the five and a half hours we were at the park, we got to ride five rides, sit down for lunch, watch two parades and we didn’t have to stand in any lines.
Once we pulled in to Animal Kingdom Lodge we went straight to the room. We had reserved one of the savannah view rooms so the kids could watch the animals. C loved watching them all graze and play. He must have sat out there for an hour just watching and finding new animals the longer he looked. R was jumping on the bed and watching his cartoons per usual. We ordered room service for dinner. This was perfect because we had entertainment with the tv and the animals while we waited for our food. The menu features some items you would expect to find like chicken and fries, but also has mostly African inspired fare. We got the Salmon and the Vegetable Curry and both were amazing. They have a few wines I really like as well. A lot of the food can be made gluten free so we ordered the kids a grilled cheese sandwich with fruit. I loved this little routine of sitting down for lunch at the park, snacking during the day on things we brought with us and then heading back to the hotel a little early and relaxing with a quiet dinner with some wine and the kids being entertained. After bath we went to bed. One of the things I immediately noticed was how quiet it was. A big difference from the last trip where our room was located next to the boat dock. While that was a beautiful view, you could hear the horn from the boat every ten minutes until well past midnight. Here there was nothing other than the random family walking down the hall to their room. I figure it has to do with whatever regulations they have in place for the animals that after sunset they keep the place pretty quiet. The PERFECT place for toddlers and babies in my opinion! (I definitely slept better too!)
The next morning we ordered the standard gluten free Mickey waffles, got dressed and headed to the playground. We let the kids climb and play for 20 minutes or so and headed out to Disney Springs. We were there that particular weekend celebrating C turning three. He is really into dinosaurs so we took him to the T-Rex place. (Tip-if you are driving there and only going to the side with the little kids stuff, park in the lime garage) The T-Rex place has a Build-A-Bear Workshop, but with dinosaurs instead of the traditional bears. They let them stuff them, add the heart and a voice box if they want. After we built his new dinosaur, that he appropriately named Roar, we went to the front of the shop where the dig site is located. You can pretend you are an archeologist digging in the dino bones or you can pan the “dirt” for gold. You can visit the dig site absolutely free. I highly recommend this if you have a dinosaur lover or sensory seeker in your life! We rode the little train and went to the candy shop on our way out. Both kids passed out for a bit on the ride home, but still managed to take a good nap when we got back home.
This trip was our biggest success yet. I would keep everything the same with the exception of pairing the parade time with lunch. We loved sitting down for lunch at the park and ordering room service for dinner. Animal Kingdom Lodge will probably be our go to hotel for a while, while the kids are still small. Setting up the FastPasses (up to 60 days in advance) really helped, because we didn’t have to wait in a single line. I hope you find some good tips in here that work for your family! If you have any tips for me, I would love to hear them!
Ahh the holidays. I love the holidays, but it’s become a completely bittersweet time of year for us now that we are a special needs family. When you have children, naturally you reminisce about your holiday experiences as a child and eagerly anticipate doing those very things with your own kids. Except what happens when the time comes to recreate those things and your child doesn’t respond in the way that you had hoped? What if it’s not even close? Are you supposed to scrap the holidays all together, ignore the hustle and bustle around you and burry your head in the sand from October through January? Cancel Christmas? Well, as much as I could use that kind of break, (can’t we all hibernate like bears in the winter?!) that’s just not realistic.
Take our situation for example. Any time we bring a gift to our son to open and try to demonstrate or hand-over-hand open the wrapping or pull the tissue paper out of the bag, he looses it. I mean full on Wedding Crashers stage 10 clinger melt down. The next step is taking said gift and trying to teach him how to use it. Repeat stage 10 clinger melt down. Then repeat the entire process with the 8 other toys or gifts that we got him. Sitting on the big guys lap or indulging in sweets- no thank you he says. My kid hates all things holiday. He’s essentially the Grinch. Pretty much the cutest, most loving, sweet, his-heart-grew-three-sizes kind of Grinch, but still a Grinch none the less and that’s okay.
There are plenty of things that I don’t like that others really enjoy, but I’m not made to like them just because it’s popular or because someone else wants me to like it. Why should he have to like the holidays and why should I be upset if he doesn’t enjoy the same things in the same way that I do? I totally understand wanting to share with him what I experienced as a child and there is a sense of loss in that. I honor that feeling completely and then it’s time to figure out what’s going to work for us.
My son actually really likes gifts if they are set up for him to succeed. No wrapping, no batteries needing to be put in, no teaching him the “correct” way to play with it. If I have it all ready to go and let him play with it the way he enjoys to, then he is the happiest little dude. The same goes for birthdays. When we sing to him he gets so overwhelmed that he cries. If we just say “Happy Birthday” in a sing-song kind of way, he giggles for days! He’s not a sweets guy, give him a piece of cake or a cookie and he’s disappointed. He likes fruit and crackers so that’s what he gets for dessert and he couldn’t be happier.
The more I take cues from him, the better the experience is for everyone. It’s always the times I try to project how the experience should go is when it ends in everyone crying. So this holiday season we will have all of his gifts ready to go for him, unwrapped with batteries in. We will have fruit and crackers instead of figgy pudding. We will have stories of Santa and his Elves instead of visiting them. It’s his holiday season too after all. I will still eat my cookies and drink my Hot Toddy’s because let’s face it, we could all use some of those to get through this journey and the season, merry or Grinchy as it may be! Here’s to making all different kinds of new memories!
Wishing all of the special needs tribe and all who love us a very happy holiday season! Hugs!
If there is such a thing as a “flexible planner” then that would be me. I like to have a general timeline laid out, but within that there is room for spontaneity. This worked perfectly for navigating a Walt Disney World theme park on a timeline with two toddlers! I am by no means implying that I have figured out all the tricks, far from it actually, but I did learn a lot during our first trip to the park as a family of four.
We decided to drive straight to the park versus going to the hotel first. I had booked us an early dinner at Rainforest Cafe at the front of the park next to the entrance so we could leave right after that around five in the evening. When we got out of the car to catch the tram the first thing we quickly realized was that our Citymini GT double stroller was not going to be practical if we were going to make going to theme parks a regular thing. It was huge and bulky on the tram and folding and unfolding was a hassle. Will invest in a double umbrella stroller first thing when we get home. I’m pretty certain C thought the tram was the first ride. He was beaming with excitement!
I had pre purchased our annual passes online and it said to pick them up at will call. There is no will call at Animal Kingdom Park, only the regular ticket line so you could just get them there if you need tickets (or from your hotel and link them to your MagicBands). We got our pass holder cards and entered the gates.
When I read the Guide for Guests with Cognitive Disabilities they talked about getting the Disability Access Pass for individuals with Autism and their families. When you enter the park all you have to do is go to Guest Services (locations for each park are listed on their website or the MyDisneyExperience App) which was directly inside the gate on the left. A Disney cast member (the name they use for their employees) was standing outside with an iPad and greeted us right away. I explained that my son had Autism and I was interested in getting the Disability Access Pass, or the “DAS Pass” as they call it, so we could limit the amount of time he would have to wait in line. She was more than happy to set it up for us. All she had to do was scan his card first and then all of ours and take his picture (while he remained in the stroller). She offered to set up our first DAS Pass for us so she could show us how it looked on our schedule in the MyDisneyExperience App. I highly recommend downloading this app for your trip. You can do just about anything from it from checking wait times for rides to setting up FastPasses and make dining reservations. The best feature for us was the walking gps. When you pick a ride you want to go to on the app you can just follow the app to get you there and it gives you how many minutes it will take you so no more trying to figure out when you need to leave by or getting there way to early or busting out the giant park map trying to figure out where everything is!
Things to know about the DAS Pass:
- Works like a FastPass and can be used in addition to any other FastPasses you have set up.
- The DAS Pass takes 10 minutes off the current wait time.
- You must go to the attraction to obtain the DAS Pass (she suggested picking rides that your little one can’t see what the actual ride is so they don’t get excited and not be able to go on it right then. Think ‘Its a Small World’ not ‘Dumbo’)
- Your entire party can use it so if you are going to the park with 10 people, all 10 can get in the same ride at the same time.
- When you want to obtain one just go to the attraction and tell a cast member you would like to set up a DAS Pass and hand the card, magic band or ticket of the individual who it’s attached to and then everyone else you want a pass for.
- Return anytime after your allotted time and go through the FastPass line!
- Unlike FastPass which is limited to three at a time on the app or one at a time in person at the park, you can get as many DAS Passes in a day as you would like, you just have to use one at a time and you have to go to the attraction as there isn’t a way to set it up on the app.
- You also have as long as you want to use the DAS Pass. You are not limited to the hour window like FastPass.
I had set up three FastPasses on the app and now we had a DAS Pass as well, so we were all set to go! We were starving by the time we got into the park itself so we stopped at the first quick service place we saw. Right after the big bridge with view of the Tree of Life just to the right was where we ended up. The first thing I noticed was there wasn’t too many gluten free options. We had packed a couple sandwiches for the kids so they would be fine. Disney allows you to bring in food and beverage (non-alcoholic) for individuals with dietary concerns. They never even ask us about it when we bring our hand held cooler in! We ended up splitting a veggie wrap that was pretty amazing! It had chickpeas, rice, vegetable curry and a yogurt sauce inside a pita like wrap. Bonus, Animal Kingdom has beer pretty much anywhere you go as well as sangria! Another side note, if you have a baby with you or one of the little ones need some quite time, the first aid/baby centers located throughout the parks are amazing. Air conditioned, quiet and clean! The air dryers bothered both my boys in the larger bathrooms, but they had no issues going into these little hidden gems!
The first two rides we went right through the FastPass line. My husband was very impressed with my organizational skills to make this happen. Our first stop was to see Mickey & Minnie and take pictures. C was so excited! He got to hug them both and give high fives. R still felt the same about the characters in person as last time, he wasn’t feeling it.
The Kilimanjaro Safaris was our second stop. They have a list of animals to look for. Our guide was really descriptive on where to look to see the animals so the kids both got to see many different kinds. The hippo even put on a little show playing in the water. I really think R was entertained during this even if he didn’t see all the animals! Going on the Jeep was probably his favorite part of the day.
We then went to go to a show I had booked a FastPass for. Shows are different as far as when you can show up when you are using a FastPass. You have to show up in the 15 minute window that they give you otherwise you will be waiting in the standard line. We missed the window, but were still able to get in and see the show. We got super lucky to get a seat though! Some of the people behind us were standing in the back for the entire 30 minutes! Troopers! The only line we ended up standing in only had a 20 minute wait. C saw it from a mile away and insisted on going! TriceraTop Spin is basically like Dumbo at Magic Kingdom with dinosaurs instead of elephants. Once the ride started they both had a blast!
We headed to Rainforest Cafe for dinner at 4pm. You wouldn’t think it would be slammed at 4pm, but it most certainly was. In hindsight this was not the best time to go considering neither kid had a nap. We ate pretty quickly and headed out. Side note, Rainforest Cafe even though incredibly loud and busy, R didn’t freak out at all and as long as you can eat meat there are plenty of gluten free options for you.
Pulling into Wilderness Lodge after a long day at the park was exactly what I needed. The picturesque scenery of a giant luxurious ski lodge amongst the towering pine trees and sounds of waterfalls and babbling brooks would make the perfect post card. I made sure to pick somewhere with room service and bell service per our last trip and this made a huge difference especially after a long day. We just pulled up and they took care of everything. The lobby is more than grand, it’s breathtaking. A floor to ceiling fireplace that could fit a family of 8 inside anchored the great room surrounded by glass windows overlooking the back of the property. Once inside the room we ordered room service for dinner. Plenty of gluten free options including sandwich bread! We had a tuna melt and chips and salsa….and wine….mmmmmm wine! We really should change up the schedule a bit next time we come. Maybe do a sit down lunch at the park for some better gluten free options and come back to the hotel for dinner. Will have to try that next time. It was so nice to have the kids relax by the tv before baths while T and I sat down for a nice dinner together.
I brought the portable blow up bed rails that I ordered after our last trip and they worked AWESOME! They are firm and stay put! The kids slept much better, but I’m not sure I did. Our room was located next to the dock on the water. The boat that goes from the resort to Magic Kingdom was running every 20 minutes and lays on the horn at every approach and deport from the dock. That lasted until 12:30am when the park closed and the boat stopped making trips. Then there was the electrical water parade at 9:30pm which plays super loud music to go along with the floats. If the kids were a bit older and stayed up this late, this would have been really cute to watch from the room, but not ideal for toddlers. If staying at a resort with water transportation and bringing toddlers, ask in advance for a room away from the dock. If your kids are older then do the opposite and ask for a room on the water so you can watch the parade from the comfort of your balcony!
Sunrise from the room was pretty breathtaking. We ended up ordering room service for breakfast so we would have no issues with getting gluten free options. The boys weren’t feeling super great so we opted to just head to the playground and head home. The playground at Wilderness Lodge was under construction so we went to Animal Kingdom Lodge instead. It was super cute with thatched roofs on top of the play sets. Seeing how great that playground was and how much C loved the animals on the safari the day before, I knew I had to book his birthday trip for January at Animal Kingdom Lodge.
Overall our first trip to the park using the FastPasses and the DAS Pass was a success and gave us lots of confidence to try it again. R seemed to really enjoy the rides and tolerate the waits and time in between the rides better than I expected. We brought the iPad for him to play on and I think this really helped. C’s excitement and happiness was palpable and made it so worth it! Can’t wait to try it again at the beginning of the year for his birthday!
Some things to remember for our next trip:
- Bring umbrella style stroller!
- If buying a day ticket, you can buy them at the hotel or the park.
- If you buy the annual pass, ask for discount wherever you go on Disney property. We even got 10% off at Rainforest Cafe!
- The Disability Access Pass was so easy to obtain. Remember to use it for rides that you can’t see what you’ll be doing.
- First Aid/ Baby Centers are great for a calmer environment for kids to use the bathroom or just take a break.
- If using FastPass or DAS Pass for shows make sure you show up in your 15 minute window!
- If staying at a hotel with water transportation, plan your reservations for your family (will your kids be up for the water shows or will they be sleeping)