Jake's Journey with Apraxia

And the Friends We Met Along the Way

This past week my family and I took a trip to Disney World. We had a great time and enjoyed spending time with the kids. As the action-packed days continued on, I found myself savoring the unforeseen moments that arise when you are traveling with a child who lives life a little differently than the majority of kiddos out there.

While there are certainly more challenges that come up, there’s also plenty of rewards that accompany them. It’s the little things that happen out of the blue that make my heart melt and those moments inspired me to write the following Top 10 list:

10. Jake’s attention to detail astounds me. In the course of eight days, we were in two different hotels. Within 24 hours of being in a new place, he could run down a hallway with hundreds of rooms and go directly to ours without hesitation.

9. If the itinerary was up to my boy, we would have spent our days riding the bus back and forth. (We rode a bus to the parks and to the parking garage). He especially loved the speed bumps, which made him giggle hysterically.

8. While we were waiting for Donald Duck to finish his two minute “quacker” snack break, the attendant noticed that Jake had on a pro baseball hat. She asked him,“Who’s your favorite player?” He turned his head to the side, confusion written all over his face. I quickly came to his rescue by saying, “He doesn’t have a favorite player yet, but my other son right here does. L, why don’t you tell the lady who your favorite player is.” I pray that one day my Lil’ Man will be able to answer an impromptu question from a stranger.

7. Once we arrived in Orlando, Jake started putting an exaggerated /s/ sound at the end of most of his words. Although I tried to correct him as much as possible, it was still cute to hear him call Daddy “Dads” for a few days.

6. Jake had a few favorite rides at Magic Kingdom and would leave each one saying enthusiastically, “I like that. Fun!” My baby is communicating and showing emotion now.

5. While we were sitting on a crowded bus on the way to Animal Kingdom, a Japanese girl who was about five was standing about a foot in front of us. She and Jake stared silently at each other. My husband’s mother is Japanese and his father is from the United States. According to the pediatrician, the crease under Jake’s almond-shaped eyes is a result of his Asian ancestry. My husband’s eyes are not shaped this way and his mother’s family lives in Japan, so I’ve never seen any of their children. The eyes of this quiet little girl were a replica of Jake’s.

To make friends, Jake started counting on his fingers in his apraxia voice and she smiled. She followed his lead and stretched her fingers out, also counting in her own way. She and Jake communicated without having to say a word. Priceless.

4. I loved watching my husband teach Jake how to golf, bowl, and shoot hoops at our hotel’s arcade.

3. Finally!!! A place on Earth that treats food allergies seriously. God bless you Disney.

2. A challenge arose that answered a prayer that’s been weighing heavily on me for a few months now. Sometimes I doubt myself and wonder if all the precautions I take with Jake’s nutrition and sleep schedule really make a difference. Halfway into our vacation, Jake had an allergic reaction to something he ate. He broke out in hives, his speech was limited, and his behavior was completely irrational. He did things during this time that he has never done before: kicking, biting, and doing cartwheels down the center of the hotel hall.

Could it have been the red dye in the Pop-Tart? Did peanut particles get snuck into it? Was it the Minute Maid Apple Juice that has concentrate from the USA, Argentina, Austria, Chile, China, Germany and Turkey? Was it the small empty container of nuts we left out from the night before? This experience made me long for the safe haven of my home and showed me that Jake’s problems could very easily be amplified in the right environment.

1. Jake placed his first order at a restaurant! When the waitress came by our table at breakfast one morning and asked Lil‘ Man what he wanted, he replied clearly and confidently, “Icky (Mickey) Waffles!” Thank goodness he’s outgrown his egg allergy and could experience this magical food.

 

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2 thoughts on “Top 10 Disney Moments

  1. Kristy A says:

    Great post! 🙂 I could literally write a book in response to this; but I will spare you and your readers! But first let me say, I’m so grateful for the week you had with your family! What a blessing! And what a blessing the “small things” are to us Mom’s of Apraxic children!!! I love that Jake ordered all by himself! That would probably have made me cry! In fact I know I would have!
    But what I wanted to make sure to say is we have had the same issues with food reactions here this last week. And it is still going on. So I feel your pain, struggle and reassurance that this is NOT in our heads!! I’m grateful Bison is ‘intolerant’ to some foods and not ‘allergic’; simply meaning no hives for B-man when he eats gluten, dairy, soy or yeast; just terrible tummy and behavioral reactions. I say “just” but it is no walk in the park. I do not know my son right now. The tantrums, kicking, punching, fighting, scratching, screaming…then that pitiful look in his eyes when he knows he is in the middle of a tantrum but can’t stop it. He has even kissed me in the middle just because he knows he isn’t acting right but he can’t stop it. Breaks my heart into a million pieces and it is all due to trying a new “safe” food. OIY! But we add it to the list, deal with the here and now, and look forward to tomorrow.
    Hugs, love and prayers to you! Lets catch up soon and especially after the DAN-doctor appt.
    ~ Kristy

    1. tstarmom says:

      Hey Kristy, Thanks for checking in and also for updating me on Bison. I’m always wondering how things are going with you guys. 🙂 Jake’s doctor’s appointment is a week from tomorrow and this week I am gathering all of the necessary information. The nurse called yesterday and said she was emailing me the paperwork and to send as much detailed information as possible in regards to his past medical records, speech assessments, etc. She doesn’t know who she’s talking to! I’m really wondering how many pages my final “report” will be. Probably more than anyone would want to weed through I’m sure.

      If you guys ever go to Disney, you must stay in a Disney Resort. The Disney parks & their resorts are truly amazing for food allergies. I felt so safe there. (Our problems arose when we transferred to Marriott on Tuesday b/c my hubby was working there). It also taught me even if you order something like a hot dog, you should still tell a chef what your child’s food allergies are. One chef said he couldn’t order a hot dog b/c they use the same grill to cook their fish on. We rarely eat out when we are at home, but I definitely learned to ask a lot of questions in the future.

      I will touch base with you next week and let you know what we find out. I hope Bison feels better. Jake woke up from his nap yesterday hive free and back to his old self. I couldn’t wait to hit Earth Fare first thing yesterday morning. Have you been there yet? I’ve decided I’m just going to start doing all my grocery shopping there. I’d rather feed my family less, but give them better quality food. Let me know if you’d ever like to go with me. It can be a little overwhelming the first couple of times. Take care!

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