Wednesday, May 26, 2010

Caution Beware: "Winging It" Can Ruin Your Vacation (or Not)

















Recently, I went to Sesame Place for the first time this season. I had gone last year but did not write about it in the blog. I think it was just too traumatic for me.

To make a long story short, last year, while visiting my brother in Philadelphia, we took the kids to the amusement park as a last minute decision. I let my brother lead the way and he suggested that I not bother with getting special "I'm-disabled-so-let-me-cut-the-line" wristbands because it wouldn't be crowded. I didn't have time to call Sesame Place to see what was required and so we just sort of winged it but when we got there, the lines were huge. There was even a line to park the car.

Note to self: Do not ever wing things - not with YOUR kids. Never Never Never, okay? And if you must, please make sure there is someone to catch you if you fall.

This was the problem with the last trip. There was no one to help me. Kai had Logan but Spencer was the extremely difficult one that day. He wouldn't go on any rides except the carousel. He wouldn't even play in the playground where there was no line and no kids! He cried and cried throughout the day. Also, it was disgustingly hot and humid and I abhor humidity 10 times more than the average person does. Additionally, I was with another family and we only came in one car so I couldn't even just leave. Big Mistake. Huge!

You'd think I'd be older and wiser now but no, not really. What I learned from my last trip out was that I must prepare the kids in advance for things to come. For us, vacations require extra prep work so that it won't turn out disastrous.

I thought that I should also get those wristbands too. I always felt like we didn't deserve them but throughout the past year, Spencer has given me so many little safety scares, a disability pass of any kind seems to put my mind more at ease. My friend Kim tells me that "easier is always better" and she is someone who works very very hard for and on her children to help them grow up happy and strong.

Fast forward to this Spring and I am preparing to go to Sesame Place again. Unfortunately, I have been very busy this month and so I barely prepared Spencer to go, thus not fulfilling my grandmaster plan of preventing the kind of anxiety I saw last year. All I did was show some YouTube videos of a couple of the rides right before we got into the car.

















We were lucky. It was a very cloudy day and the park was not crowded at all. We got our special wristbands and we parked in the handicapped parking spot and things were feeling easy. We saw the carousel and Spencer said that we didn't want to ride it but he didn't have much of a chance to complain because I just walked right in without waiting on line. We rode it three times in a row and he finally started to feel a bit at ease.

We moved onto other rides and I tried to do the same formula then. Ride the ride three times in a row and by the third time, he'll start to enjoy himself. However, at this ride, the line seemed longer and our cutting the line seemed quite noticeable. I felt uneasy about it but what could I do. This is the way that my son will enjoy this park. We must pick just a few rides and just ride them several times. We can not roam around the park and just pick what grabs our eye. Additionally based on each child's sensory needs, perhaps even 50 percent of the park's attraction would be useless to them. I think I can estimate that Spencer can only enjoy about 25% percent of that park.

Nevertheless, to the staff and other park-goers, we may have looked like we were abusing our privilege by camping out at a ride for three turns but that is the only way my child will come to enjoy this park. I have a feeling that some of these workers do not know this so I have decided to write to the park's customer service folks and let them know.

I tried very hard not to meet anyone's eyes when I made use of our magic wristbands. I imagined that no one knew why we were there. It is not as if Spencer is in a wheelchair. I think maybe next time, I will have him wear a shirt that sports the logo of a national autism organization. Perhaps that might give others an idea why I cut the line even though Spencer is not diagnosed with autism. I am sure that my cutting the line aroused at least a bit of ill will. I did hear someone telling their child that "you have to wait on line just like everyone else," and I wondered if that was directed towards me.

By Spencer's third ride, it was apparent that he thought riding was a good experience so I took him to a spinning teacup ride and I had him wait on line for the first time that day. It was then that I figured out the best reason for the wristbands. That is, the wristbands are for the caregiver as much as they are for the child. I had trouble keeping Spencer on the line and keeping his body safe as he waited. Sure, he waited on line just like everybody else but I was quickly losing my patience and began to understand why I hated my last experience there. Keeping him "in line" while waiting on line is so draining. I think I'm entitled to not have amusement parks kill me while I'm trying to show my kid a good time.

I would have tried to go on more rides but clouds in the sky did fulfill their threat to rain on our afternoon. I was sort of happy to leave. We had been in the park for almost three hours and ask any therapist of ours and they will tell you that our kids really can't handle much more than that anyway. Wristbands or not, amusement parks are an expensive proposition for us. We will never soak up the park like other families do. I think Sesame Place does give discounted single-day admission to children with special needs but not to their companions.

Everyone thinks that Sesame Place will be a dry run for us to go to Disney. Those words were ever more clear after our three hour visit to Sesame Place. To make our vacation reach our goals of having fun (all of us - not just the kids) I think we have to do the following things:

1. Pack food to avoid long cafeteria lines. Waiting is more stressful to the parent than it is for the child. However, I will not pack too much water. I will cough up the money for that because that is just too heavy and you never wait on line for water anyway. Same goes for treats. I am also going to look into sit-down restaurants as an alternative to packing lunch for some days. Cafeterias are very noisy and overstimulating.

2. Do YouTube prep as much as possible but save them all in a playlist in advance (more homework for me) so that they can do continuous watching of my hand-picked selection of videos that best represents what they will be doing. If you have a DisneyWorld YouTube video that could help us, please email me the link!!!! please, please!!!!

3. Print out pictures of rides and make a pictorial checklist/itinerary of where to go on each day. This must be completed before we leave and must reviewed consistently prior to leaving. Include Logan in making our itineraries.

4. Print out pictures of the rooms at the hotel. Print out pictures of the hotel. This could be part of the checklist/itinerary too so that we can signify an end to the day at the park.

5. Get a 7-day pass to Disney. The increase in price per day is so small after the third day at Disney. It is better to pay more and do less per day at each park then do a lot at a park for the whole day. I think this is the best way to make good memories for us.

6. Do as much research as possible. Avoid wandering. This will be extremely hard for my easily distracted brain but I will resist the temptation as much as possible. I will however, wander a place only if we've been there before and the kids feel at ease after seeing familiar sights.

7. For Spencer the scared one, I think riding rides once to three times will be good for him. If he tells me that he wants to go but is not wailing then I will try to stay on the rides for another round. If he is happy then that has to mean that I can go and try another ride. I really hope I can follow through on that.

I am lucky this year that Logan is going to a great school because one of his classmates is going to stay at the same hotel that I will stay in (around the same time). I am hoping that they will be able to play independently together and free me from playmate duty for a little bit.

Oh how I wish I could take my teen babysitter with me. Now that would be a real vacation. This is more of a family trip. I still have to cook and do laundry. We chose a place with a kitchen because of Spencer's allergies. I think we'll save money this way as well but this vacation has been hard to accept because we have been paying extra for everything to make this vacation work for us including non-stop flights, an extra bedroom, a kitchen, and even an extended stay so that they can have extra time to practice having a good time. Their "extra" needs spell "extra" expenses but hopefully I will get my act together and fulfill the above checklist. I can't believe how much work I am going to have to do but at this point, I know that if I don't, I will no doubt be adding extra alcohol to my long list of "extra" expenses.

Photo: Like I said before, I will never ever "wing it" again unless I have help. This past weekend, we made a decision to go to the Adventure Aquarium in Camden, New Jersey. This place was amazing. You could actually touch the starfish, stingrays, and jellyfish too (safely). The boys didn't really touch it that much but it was a thrill enough for them to watch us touch it. I told my brother (the pusher to new heights) that the boys weren't good "lookers" but he still kept pushing me to go.

He even bought tickets to a 4-D show which I was also hesitant to do - can you say "auditory overstimulation?" (Spencer is pictured here with his 4-D glasses that my brother pilfered). Logan covered his ears for the first quarter of the show but both of them ended up enjoying it. Hooray, I was so glad to be wrong! I guess the lesson learned is that winging things with special needs kids is okay but only if you have some cushion to catch them if they fall and oh, that cushion can not be you. Then who is going to catch you?

Picture 2: My beloved disability parking permit, valid only in the greatest city in the world. Sesame Place accepted it though. I really fought hard for this little placard. They first rejected Spencer's application but I appealed it. I questioned myself many times on whether or not we deserved one but I felt like I was Spencer's wheelchair even though he is not physically disabled. Without me or a trained grown-up, he can not go to many places safely. If your state or city offers this permit to children with disabilities, please consider getting it if you might need it. It could mean less anger and frustration in parking lots and sidewalks and most importantly, more safe travels and more travels at that!

3 comments:

Crystal said...

How funny -- we were at the Adventure Aquarium this weekend, too! It was our first visit, and we loved it, especially the tunnel of sharks. Truly amazing.

I knew my 4-yr old (PDD) wouldn't be able to handle the 4D movie experience at the aquarium, even though he loves the "Happy Feet" movie. BUT -- we did successfully take him to see Shrek 4 (just not in 3D) on our weekend away, which was his first time going to the theatre. Baby steps, baby steps!

Some theme parks are much more accomodating than others for kids with disabilities. I'm glad you had a decent experience at Sesame. In my experience, Rye Playland fits in the category of "HORRIBLE, HORRIBLE - NEVER AGAIN!" They were not AT ALL understanding, and made our visit just awful.

We've been to Disney World 2x in the past two years, and once you get through the awful experience of getting through the airport and (and your poor kid literally having hysterics and flipping out because he has to take off his shoes to get through security!!), the Disney folks are SO gentle and accomodating for kids with disabilities. We ended up not even needing to use our special pass at Disney, he actually handled everything *so* well.

My two nuggets of advice for navigating Disney: 1) take your kids' lead, even if it means only going on the same rides over and over, and 2) parents -- try to relax & have fun! :-)

Gemma said...

We have two kids on the spectrum, too. Disney rocks for kids with autism! We got the pass for the first time this year (our 4th visit all together). With this, you get to use the Fast Pass or alternate entrance for any ride that has one. This cuts your wait time considerably, but not entirely. My experience is that is cuts it to about 10 minutes, and sometimes much much less.

The Disney staff are HIGHLY trained to interact with kids with autism, too. They will never touch a child with autism, unless it's to stop them from harming themselves or others. My youngest (5, nonverbal) managed to get lost for about 10 minutes while we were checking into the hotel (Grandparents were watching the boys and they didn't communicate who was watching whom---that was an experience!) and I became "That Mom" in the lobby of the Polynesian Resort that morning--I remembering calling and calling his name and trying hard not to freak out and to give the pertinent information to everyone helping me.

The staff was awesome: they dropped everything, and everyone (and I do mean everyone-they came out of the woodwork) began searching high and low for the "five year old, autistic, nonverbal, red t-shirt, holding a stuffed Tinkerbell toy". It was only later (after my adrenaline surge passed) that I truly marveled at how fabulous they worked together as a team to locate my boy. The guy who found him--outside the front door, under the portico--had managed to get my little boy to sit down and was calmly asking him about his Tinkerbell toy. He wasn't touching him, but was gently, and calmly not going let him run away, either.

I think next year, I will let them wear Autism Awareness shirts just to help tip off the staff a little faster, but as I mentioned before, they really are trained for this.

Disney is a really magical place for Spectrum Kiddos. It's just such a visual feast for the eyes, and if you are highly visual, I can only imagine how awesome (and potentially overwhelming) it must seem. My older son LOVES Disney so very much, but you are so right in letting them watch the You Tube videos as much as possible. Kiki (my older son) wouldn't go near some the rides, but couldn't get enough of them the following week at home on You Tube. Maybe next time, he will want to ride them.

Also, some of the photographers are better than others at getting pictures with autistic kids. They just are more patient and seem to just sort of let the action unfold, ready to capture it.

Love your blog. Just found it. I will have to read more!!

Phillip said...

What a wonderful post. You really are a good mother to your child that you always think and find ways to make him happy. Just like you, customer service call centers are doing the same thing just to provide their clients the excellent customer service they truly deserve.

I hope that you truly enjoy every single day of being a loving mother to your son. Thanks for the post!