We Came, We Saw, We Conquered

Here we are right outside of Diagon Alley

As most of you know, we spent Spring Break in Florida. We've been planning this vacation for at least a year. We had wanted to go last year but decided to make some much-needed improvements to our house instead so we saved diligently in order to make it happen this year. The impetus for this trip was Ben & Caroline's love for Harry Potter: we wanted to capitalize on this unique time in their lives when they are both interested in the same thing at the same time. We went to Disney World over 5 years ago (I was 30+ weeks pregnant with Elias!) when Caroline was in full-tilt Disney Princess mode and we were so glad that we were able to do that with her at that time -- and really they were both into the Disney movies and Mickey Mouse at those ages.

Fast forward to now: our plan was to go to Florida and mainly do Universal Studios, no Disney this time. Elias has not shown any interest in Disney, Mickey Mouse or any of the Disney movies to this point so we weren't going to spend the hundreds of dollars to do Disney in addition to hundreds of dollars for Universal. So really, this particular vacation in large part was for my oldest two as well as me and Chris since we both are HP fans. Because of this fact, I was very anxious about it, mostly because I didn't know how Elias would react to any of it. The opportunities for things to go badly were endless in my mind especially because my brain automatically defaults to WORST CASE SCENARIO:

• He would have a meltdown in the TSA Security line and/or try to run to the front of the line
• Wouldn't want to get on the airplane
• Once on the airplane he'd scream the whole flight
• After the layover in Atlanta he wouldn't get on the second flight
• He wouldn't get in the car that we were renting for the week (he has shown a reluctance to get into other people's cars from time to time)
• He wouldn't go in the bathrooms at any of the places we were going to be
• He wouldn't sleep well in a new environment
• He'd hate Universal Studios: crowds, heat, lines, rides, you name it

Silly mama, why were you so worried?

Do you want to know how many of these WORST CASE SCENARIOS happened? None. Zero. I credit Elias and also his therapists who have been helping him. We did some prep work with him and took advantage of the built-in accommodations available to us. Here's what I think helped:

1. About a month before vacation, Caroline & I went to Denver to visit some very dear friends. Because of that trip, I realized what a sensory nightmare air travel is: lots of people, unfamiliar building, waiting in line, new smells, lots of noise. So I talked to his speech and OT who did some flight-related things with him during school and we watched several YouTube videos about the airport and flying. I found this one helpful, as well as this one. Then one of my friends clued me into the Daniel Tiger episode where they show a video of a girl going through airport security! Score. (Can I just give a shout out to YouTube too? I love that I can find a video of just about anything) 
2. We also adapted a social story from this site and customized it for our trip. He didn't seem too interested in it but we read it a few times to him.
3. TSA Cares: So, this seems like a bit of an oxymoron, right? I mean, they don't seem to care one whit when you've been standing in line for 45 minutes and about to miss your flight and they pull you over to wand you. But, they do have a special program for people with disabilities. I called them the day before we left and they assigned us a Passenger Support Specialist who met us at the Delta check-in counter and escorted us past the crazy long security at Midway airport (at 5:00 AM on Saturday morning!!!) and right to the front of the line!! 
4. We got an Attraction Assistance Pass at Universal Studios which basically functioned as their Express Pass where if the posted wait time is more than 30 minutes they wrote on our pass and we could come back at the time they listed so we didn't have to wait in line. We could use this even if Elias didn't want to ride on the ride. We also took advantage of their child swap program so that Chris could go on with the older two kids, I waited in the Child Swap room and when they got off I could get right on. The combination of both of these things eliminated a ton of waiting around and made things significantly easier for all of us.
5. We rented a stroller at Universal. Chris at first thought that Elias could just walk or that he could carry him. This unfortunately wasn't the case. It became apparent pretty quickly that Elias was going to want me to carry him through the park for much of the time. He's almost 50 pounds and that was not going to be an option. So we got him a mini kiddie car each day we were at the park and we were all much happier as a result. He had his own little space that kept him isolated from all of the crowds and I was significantly happier not having to carry him or hear him crying in Chris's arms.

So we did three days of Universal, but we also had many opportunities to do the activity he loves most in the world: swimming. We visited my dear aunt and uncle who live on the gulf side one day and have a pool in their backyard, and they live right on the beach! We were also at a resort that had 7 separate pools, so there is no need to feel sorry for this child getting dragged around Universal Studios, he had fun on vacation too :)

No suffering going on here

lessons learned

I am so thankful for this boy.

It's hard to believe, but we are just about one year out from diagnosis. I have been living and breathing this diagnosis, saturating my brain with as much information as I can possibly hold. It feels like it's been significantly longer than a year; so much has happened both in Elias's development as well as in our family and in me as a mother and a person.

1. God is faithful

Yes, I knew this before. But I knew it as an academic exercise. His faithfulness and provision for us has been kind of outrageous: at every turn I have seen evidence of Him opening doors and creating opportunities for us. We needed help and He provided it through Elias's school, through friends and family who have loved us and walked through this with us, through our church who accommodates and cares for Elias.

2. When I am weak, He is strong

So, this is a corollary to #1 and a verse (2 Corinthians 12:10) that I memorized shortly after becoming a Christian in college. Again, it was more or less something I knew in my head but hadn't really experienced. I have always had the resources to do what I needed: I have never had to depend on God for shelter, food, clothing, and other basic necessities. And now I find myself in a situation in which I am powerless. Yes, I can find therapists for him. Yes, we have resources to get him at least a minimal amount of support. But we cannot make him talk. We cannot make him learn. What he needs is significantly far beyond our means or ability. This has to be the work of the power of God in Elias's life.

3. Autism is a descriptive diagnosis, not a prescriptive one
In those difficult days after his diagnosis, I was so sad because I was remembering all of the things I had read and seen about autism up to that point. The only positive thing I could think of was that Einstein was supposedly autistic. The fear-mongering that the likes of Autism Speaks and Jenny McCarthy had spread was fully imbued in me to that point where autism was just a step up from your child being diagnosed with a terminal disease. I now see that autism DESCRIBES one part of who he is. Autism shades and nuances who he is but it also is not the only thing about him. Far from it. Similarly, autism is not a prescriptive diagnosis. It does not tell us what the future is going to be for him, it does not tell us what kind of abilities he will or will not have. It's not a condemnation. It helps us know how to better support and teach him. And very importantly it gets him the services that he needs through insurance.

4. Awareness of the disability communitiy
Similar to white privilege where white people never need to really think about or engage the needs of racial minorities, ableism is a form of hegemony where disabled people are pushed to the margins and are at best disregarded, ignored and only grudgingly accommodated. At worst they are bullied, scorned, and even killed, sometimes by their own parents. I fell into the ableist camp before his diagnosis. I didn't need to think about disability so I didn't. And now that we're knee-deep in disability, it's always on my mind and it's opened my eyes to how much has been done to disabled people in the past, how far we've come (thank you George H. W. Bush for signing into law the ADA / IDEA act!!). I am proud to be part of this community, even as a neophyte.

5. Recognizing differences in everyone
Since I was previously ignorant of disability and its various manifestations which, when non-disabling, are more commonly known as just differences, I began to see that my daughter has some sensory issues that I never understood before. Because of Elias's diagnosis, I am a lot more sympathetic to my other kids and have a better understanding of them. I do more assessing of the situation before I jump to conclusions about their behavior. I also see things in myself as well, like how I don't like large crowds or how cranky I get when things are too loud.

I feel optimistic one year post-diagnosis. We have a ways to go and we are obviously in the long-game but I absolutely know that Elias is in the best possible place for him at his preschool. He is making good gains in language, attention, and awareness. I am SO glad that we live in a time when autism and disability in general is starting to be more visible and less vilified. A time when I am not pressured to institutionalize my child or told that there wasn't anything that could be done to help him.

I am so proud to be Elias's mom. And I am so thankful that God has used him as a catalyst for change in me.