Thursday, December 22, 2016

Universal-ly Autistic

Evan in front of The Knight Bus at Universal Studios.

So, we've just returned from a short trip to Orlando, Fl. We won't be going back anytime soon.

When my husband and I first started talking about this trip, we were hesitant to pull the trigger...we rarely go anywhere; in fact, we often don't even leave the house on weekends except to go to Evan's swim lessons and to shuttle the girls to wherever they might need to be. We've become hermits, and it's directly related to Evan; he spends so much time being unhappy, that we like to give him as much decompression time at home as we can. We realize that this approach is not the best and that we need to push him more to get him out of his comfort zone, but we get tired and he gets tired and it's easy to keep him where he is happy...

Ultimately, we decided that we should make the trip and do something different and fun, and we honestly thought all the kids would love it, especially our Harry Potter loving kids. We chose to only purchase 2 days of park tickets even though we had 4 full days in Fl; we knew that Evan probably wouldn't tolerate more than 2 days, and then we'd play it by ear with one of us going somewhere of the girls choice while the other stayed with Evan.

In hindsight, we should have done several things differently, but there is no Monday morning quarterback in real time life. Autism is such a funny, fickle thing, and I find myself frequently - almost daily - wondering if I've done the right thing with Evan. If only I had brushed his teeth 5 minutes earlier, for example, then he would not have melted down. If I had answered him in words instead of a 'hmm',  if I had offered him this food and not that food...
...I could have...
                        ...I should have...
                                                  ...I would have...
                                                                  time, I'll...

I'll spare you the list of could haves and should haves here, and sum it up by saying that our trip to the parks with Evan were terrible. We tried Universal first, and that day I was carrying him before we even made it into the park. Evan said it best with this quote: that was not a happy place for me.

Two days later, we tried Legoland, and that went even worse. It didn't help that our day began with a compliant from our downstairs neighbor about the noise Evan was making while playing his imagination (his way of regulating himself, which includes lots of physical movements); he got very mad about having to be less physical and/or moving his play to another room, which led to an hour long tantrum that caused me to miss my run (hence, add a grumpy Mama into the mix). Once in the car we were able to snap him out of his funk, but the car ride to Legoland was a tad too long and by the time we got there he decided he wasn't going in and wanted to go back to our condo. After telling him he would suffocate in the car if we left him there alone (really, I'd had enough and let's just all be honest about what happens to living things in a hot car), he allowed me to carry him in. Here is a little picture diary of that day's adventures:

 The last picture is of Evan and Jayme in the quiet room at Legoland; it was our last resort to stretch out his day so that the girls could do as many things as they wanted to do. Ultimately, Jayme had to take Evan to the car where they waited patiently for us. 

Though Evan enjoyed the pool, this trip was by far the worst trip we've ever had with him. We knew the parks would be busy and overwhelming, but we never expected them to be such an epic failure. We carried him the majority of both parks, and struggled to get him to eat or drink.

We aren't park people...none of us like noise or crowds; one of the Harry Potter rides had a 90 minute wait, and the girls said "no thank you, not worth it". However, with the exception of Evan, we were all able to work through it and have fun. Evan's reaction was so profoundly abnormal that it was very difficult to remain positive and not ruin the experience for the girls. I think we did a pretty good job; personally, I just powered through carrying him and focused my energy on the girls without giving too much control to Evan. Every time he complained, we acknowledged his feelings and I would say to him, "I'm here to help you, that is my job as your Mama, and you're doing a great job keeping it together". 

I learned more than a few things from this trip, but here are the important ones: (a) someone needs to mass market a backpack made to carry heavier children/lighter adults, and (b) always stay at a resort that has a bar at the pool.

Because this trip and it's painful nature is so fresh in my mind, I was struck by some words Evan wrote in a poem that I viewed at his school today:
Playful, funny, smart
Son of Jamie and Gretchin
Who loves Michael,
fish, science
Who feels good, happy,
Who finds happiness in
Science, snow, playing
Who needs food
Who gives presents
Who fears bees, underwater, volcanoes
Who would like to see 
Who enjoys friends
Who likes to wear clothes
resident of Boxford
Can you guess the line? Look for the word normal. Gosh, that made me pause. Good, happy, normal. Was he coached to use these words? I hope not. I really, really hope not. As much as we struggle, as much as I hauled him around for hours with my arms shaking from fatigue and sweating up a storm - if he can navigate through life and feel good, happy, and normal, will be o.k. 

But, let's just stay away from amusement parks for now ;)

Sunday, December 11, 2016

Evan Turns 8!

Today is Evan's birthday; it's hard to believe that he is 8. The house is quiet, as we have divided and conquered again with Dad and middle sister, Shayna, at big sister Lily's play. Evan hasn't left the house all weekend and has been in the same pajamas since Friday. He asked to cancel his swim lesson, which normally we would not do, but as it is his birthday we felt inclined to appease him.

SO, this means that he has done nothing all weekend. Nothing. Just the way he likes it. He didn't want a birthday party and he asked for his birthday dinner to be brought in (from our favorite Japanese restaurant). No cake (sugar cookies with sprinkles only), no singing of "Happy Birthday". In other words, it's the complete antithesis of how we celebrate his sister's birthdays.

 It's quiet.

It's nice, actually.

It's completely socially dysfunctional.

It's o.k.

Today, it's o.k....

                      ...Happy Birthday, Buddy.