PJs first trip to DisneyWorld!

One of the most amazing things we did in 2016 was take PJ to DisneyWorld for the first time! It was her third birthday gift from my parents and it was such a blessing to be able to take PJ to the happiest place on earth.

We decided the best time to go during our trip would be the week after Thanksgiving so we could enjoy the Christmas decorations since Carlos and I had never been during the holidays. I probably wouldn’t suggest going that Monday after Thanksgiving seeing as it was packed but our next two days weren’t so bad.

I was actually really disappointed at how PJ was when we first got through the gates. She was so unimpressed. She hated waiting in the long lines and hated getting in and out of the stroller. Most of the first day I legit thought my kid hated me. But after getting the autism diagnosis it makes sense, she was just on a sensory overload and didn’t know how to process everything.

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After PJs umpteenth tantrum, I remembered that Disney offers disability passes so that you don’t have to physically wait in line but come back later after the current wait time. This was seriously the BEST thing we could’ve done with PJ. Even though we spent much of the wait times walking her around in circles or browsing through the gift shops, PJ wasn’t confined to a slow moving line which limited her fussiness. My 28 week pregnant self also didn’t mind limiting the time on my feet either.

Once we managed to get our hands on that disability pass PJ truly enjoyed the rides. Her favorite being Under the Sea: Journey of the Little Mermaid. We rode that ride every day, two and three times because she was in awe every time. I knew my baby was a Little Mermaid fan but didn’t realize the extent of it until our time at Magic Kingdom.

PJ had already met a few of the characters but she would scream and run away in fear every time they tried to approach her (Seriously, sorry Mickey if I would’ve known I wouldn’t have made her come in…however it is kinda weird that you talk now). But I decided that I would try just ONE more character before forever swearing off making PJ meet them. When she walked into Ariel’s Grotto this kid lit up like a firework on the Fourth of July. Walked right up to her and hugged her and kept on saying “Wow…” and tried touching her hair and, awkward to say, clam shells. Ariel was a sport considering how touchy PJ was but it really made her whole experience.

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PJ hugging Ariel for the third time during her Meet and Greet.

The biggest disappointment was that Haunted Mansion was closed during our visit! PJ had just gone through a Halloween/ghost obsession and I knew she would absolutely love that ride but it was closed the three days of our visit.

I won’t bore you guys with a huge list of things to do and not to do considering there are hundreds of them all over the internet. However I will say for parents with kids with ASD: GET THE DISABILITY PASS. Even if you don’t end up using it because the lines are short or you’ve done well with FastPass+ it’ll be nice to have it handy. Also, get the MemoryMaker photo option. I know it’s pricey but we got some AWESOME shots of PJ and we were able to focus on being present in her experience rather than fidgeting with our camera. And it’s true what people say, the photographers take way more pictures with their cameras knowing that you’ve already paid for the service than when they use your camera.

*If you ever find yourself needing a place to stay in Orlando with your family, I HIGHLY recommend considering AirBnb with Barbara. For whatever reason I wasn’t able to leave her a review on AirBnb’s website but my goodness this was the best thing we could’ve ever decided to do. The place was huge and modern, we totally took advantage of the pool and onsite playground, and PJ loved taking a bath in the jacuzzi every night after our days at Disney. The hostess has put so much thought and effort into the property, honestly couldn’t ask for anything better. Assuming she’ll still be renting her property in a few years time, we will definitely be staying there again.

 

Our new adventure with Autism.

I’m not sure if I’ve mentioned it before but PJ has a speech delay. She’s always been hesitant to speak or communicate in ways other than grunting/screeching and pointing.

I started noticing the delay when she was about 18 months old and still hadn’t said,”Mama” on more than one occasion. Whenever I tried to share my concerns everyone brushed them off and said things like, “Kids develop at different speeds/So and so didn’t start talking until they were 5/You’re just being paranoid she’s fine.” But deep in the pit of my stomach I knew that things weren’t fine.

When PJ started school last year I always asked the teachers how she was doing and I was constantly being told that she didn’t really interact with the other kids or that she would immerse herself in her own activities and not participate. They thought she might have an ear problem so we started taking her to appointments. We had a few meetings with the school’s psychologist but she never suggested anything more than what we were already doing.

After months of appointments of hearing tests and figuring out that her hearing was in fact fine we were directed to see a pediatric neurologist. She prescribed an EEG which took us MONTHS to finally get because PJ kept getting sick whenever we had it scheduled–after 5 months we finally got it done and everything was normal. The neurologist also suggested we start seeing a speech therapist to see what we can do. And so, PJ started seeing a speech therapist twice a week for 50 minute sessions.

After only two months of therapy PJ was able to say more than one syllable words. She started asking us for things as opposed to grabbing us by the hand and taking us to whatever she wanted. She was able to put tiny phrases together like “Momma come!” or my favorite at the time “Shake, rattle, roll!”

Don’t get me wrong, PJ knew things. She knew her alphabet. She knew her numbers. She knew the difference between her vowels and her consonants. PJ knew her animals and what noises they made. Everyone, including the doctors and teachers, said PJ was brilliant and knew more than most two and a half year olds but she just didn’t know what to DO with that information.

When we took PJ to Miami, coincidentally right after she turned three, she had an intense mental growth spurt. She was able to answer “yes” or “no” to our questions and she was able to more or less communicate with her cousins. She would talk to us about things she saw or specifically ask us for things like “Mom, we go to cousin house?” I must’ve cried so much on our trip just seeing this new light in her eyes, the excitement of being able to communicate. But she still had her little quirks of isolating herself, not answering to her name whenever she was too immersed in something, or even organizing toys by size or color.

Fast forward to last week when we had a meeting with a new pediatric neurologist. This time we were (unknowingly) meeting with the head of the department at our hospital. She spent almost two hours with us interviewing us and observing PJ play in the corner of the office. For the first time someone asked us, “Have you ever thought that your daughter could be on the spectrum?” I wanted to break down crying because finally someone wasn’t ignoring it. I had spent months trying to get someone to acknowledge that it was a possibility but every therapist and doctor said we hadn’t crossed that bridge yet.

To sum up the meeting she recommended we start taking PJ to meet with an occupational therapist as well as her speech therapy. She was calm and patient, she explained that PJ obviously isn’t on the more extreme side of the spectrum (whatever that means) but that she just had things she needed help with. She assured us that PJ would lead a normal life; which kinda made me roll my eyes because obviously this isn’t a death sentence but I guess not every parent sees it that way.

However I will say that this couldn’t have come at a more stressful time. Trying to set up an appointment with a therapist in the middle of Uruguayan summer is next to impossible since everyone is on vacation. We still don’t know PJs school schedule for the upcoming year so we can’t really schedule a set therapy schedule until the end of February. And then of course we have the new baby coming. We’re going to do everything in our power to get PJ the help she needs but it’s not going to be, for lack of a better word, easy.

Right now I just ask for positive thoughts and prayers as we navigate through this new parenting journey. That God place us where he wants us, with therapists that will help her, with teachers that will be understanding, and as always continue to bless us with people that love and care for our family.