An EK Adventure with Autism

7 Feb

We had tickets to Enchanted Kingdom as early as December. They were part of our gifts to Alphonse’s nannies. They’ve never been to a theme park before, having come straight from their quaint town in the province to Manila. But Alphonse got dengue and the holidays forced us to reconsider our plans. We planned for January and that didn’t work out too when we all got sick one after another. Moreover, Alphonse’s deteriorating behaviour was a major concern. How could we risk a public meltdown? We could see the disappointment in the nannies’ faces when we postponed one date after the other. They have all been so patient with Alphonse that we felt they needed to relax and have fun too. So the Sunday before last, we decided to put everything on hold and take the day trip to Laguna.

Things, however, never go smoothly for this family. Halfway through the trip, Alphonse removed his seatbelt, stripped naked, and refused to wear a stitch of clothing. Nothing we said or did could make him listen. We turned back, the sad, long ride back home filled with silence.

This time, we knew we had to work harder on preparing him for the next Sunday. We scheduled a full week of activities for him. Each day, we worked with him from early morning till dusk, making sure he was happy and tired before bedtime. I made a book for him for the week to prepare him for the days leading to the trip itself. While he refused to sit and listen many times, we pushed this activity as often as we could. The nannies carried this seven-paged laminated book at all times, as well as his PECS board for communication.

Pages from his book

On the day itself, Alphonse woke up bright and early, cooperative and compliant. He took a bath without complaints and dressed in house clothes. We brought his change of clothing in the car, reminding him he needed to change again before we went inside the theme park. Armed with a bag of clothes, a bottle of bubbles, PEC cards, his meds, and the book, we crossed our fingers and set off early.

Helping hands when we needed them most

But remember how I said nothing ever goes smoothly for our family? Once again, halfway through the trip, we had to stop- this time, for a flat tire. Yikes! We were on the SLEX when we felt the sudden gentle swerving of the car. A passing motorist in a white SUV motioned for us to look at our left rear tire. We exited the highway hurriedly and looked for a gasoline station but could not find any nearby. When we pulled over and inspected the damage, the tire had gone completely flat. It seems like we picked up a humongous nail somewhere at the SLEX, puncturing our tire.

We often dismiss the Filipino bayanihan spirit as motivated by the promise of reward but yesterday, we felt this spirit embrace us as kindly tricycle drivers who were waiting for passengers hurriedly came to our rescue. As wary as we were of strangers, it was not difficult to smile as this rowdy, jolly group took turns in helping us. When we offered them a bit of money for their help, their initial reaction was to wave it away. But A, extremely grateful for the help, insisted and they finally accepted.

An hour late from our original schedule, we finally reached Enchanted Kingdom. Alphonse put on his clothes, posed a bit for some pictures, and settled into his rented wheelchair without fuss. The nannies took off for the rides, pausing now and then to check on us.

I know that Alphonse must have felt the urge to take of his clothes, and he did take off his shirt twice. I noticed a plain clothes park security officer hovering near us, perhaps waiting to see what my son would do next. But when reminded of his promise to keep his clothes on, Alphonse readily complied. I was so proud of him then. I would see him touch the hem of his shirt, wanting desperately to strip, but he stopped himself from doing so each time. I didn’t even need to remind him often.

Despite our best efforts at preparing him, he still had two meltdowns. One was at lunch. Some of our food came just as he was finishing his. He must have thought he was going to be forced to eat some more so he threw mine away. I didn’t get to eat lunch as we rushed him outside, away from the clatter and sounds of a noisy lunch room.

Nannies on seat 19

The second meltdown was mid-afternoon. We were sitting under the shade, waiting for the nannies to finish a ride. Alphonse was very drowsy then. Suddenly noticing a small discreet doorway, he made a run for it. A followed him. I dropped everything I was carrying and also dashed after him. Oldies that we were, we were not quite up to par with his speed. He made it past the doorway (which turned out to be the staff’s entrance to the park) where he was met by EK staff and held back by his arms by his dad and four other people. Alphonse reacted the only way he knew how- he started lashing out. By the time I arrived, he was flailing one free arm, forcing them away. He didn’t even see me come near as one of his arms landed a blow to my chest. I shouted for everyone to let him go. I told them he was afraid and angry. When they released him, I talked to him quietly, asking him if he wanted to go home. He nodded yes. I told him that was not the exit and that if he wanted to go home, all he needed to do was hold our hands and follow us. Understanding dawned on his face as he quieted down immediately. He followed us meekly and sat on his wheelchair, and we wheeled him out of the park as fast as we could.

On hindsight, we could have handled lunch differently. We should not have insisted on eating inside the noisy lunch room (there was a children’s party inside, on one corner of the huge dining area). We should have waited while all the food was served. We should have eaten all at the same time, save for one or two people who would assist him for lunch, to take away the pressure and anxiety he feels at seeing uneaten food. And when he was done, he should have been brought elsewhere to wait for the rest to finish.

Alas, naked for the ride home!

Also, I think the park should get more training on how to handle persons with autism. There was a commotion as park employees- strangers to my son- held Alphonse back by the arms. There was a woman shrieking loudly for spotters and security. There was the noise of a walkie-talkie buzzing with loud chatter, as they frantically called for help. Truth to tell, there was nothing in that area that would have been off limits for my son. I do appreciate their intent to help as I also completely understand the difficulties of communicating with a person with autism, but agitating an already agitated individual is never a recommended approach under the circumstances. This was Alphonse’s fourth visit to the park over the years and I think park employees still find him a strange sight. I could sense that they were a bit afraid and overwhelmed by his stims and weird mannerisms.

Despite these two episodes, Alphonse kept his promise to sit in his wheelchair and behave (within limits). He kept his clothes on. And he lasted four hours in the park under the sweltering heat of the noonday, allowing his nannies to enjoy a few hours of carefree fun.

Always literal of mind, Alphonse did keep his word to the last. On the ride home, he stripped off all his clothes again, sleeping buck naked in the cold of the airconditioning. My bad. I forgot to make a page to remind him to keep his clothes on on the way home. Ah, well, with autism, there are always new lessons to be learned.


One Response to “An EK Adventure with Autism”

  1. Lissa Poblete February 8, 2011 at 7:32 pm #

    hi ate pinky! i thank God for your four great nannies! that’s why we sometimes call them “angels”. they are God-sent. true helpers! yay for Alphonse who kept his word to the last! i thank God too for the kind tricycle drivers who helped you! that flat tire could’ve been dangerous. the Lord truly watches over us! and, a big, warm hug for you, who is the super-mom of Alphonse and his brother! you are an inspiration! you are loved and appreciated!!

    but, a big “boo” to EK for not handling Alphonse’s behavior correctly! hmph! maybe you could write them to tell them to train their employees on autism awareness, just like SM did.

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