Carefully Controlled Chaos

092What is it like going to Disneyland when your husband has ADD, one of your sons has Asperger’s, the other has ADHD, and you are chronically ill? I have three words for you… carefully controlled chaos. Oh make no mistake, we had a great time, but it was certainly an exercise in my personal abilities to summon large amounts of patience. For our family Disneyland is a mixture of nervous anxiety and pure joy. I’m sure most families experience these moments on any family vacation but when the majority of you have challenges that make being in crowded, noisy, over-stimulating places, those experiences are heightened and magnified.

I’ll start by saying that we love Disneyland. That is probably from my influence. I had the good fortune of going many times with my family. Disneyland and Disney World hold some of the most precious memories I have with my family growing up. We had such a, dare I say it, magical time there that I have very fond recollections of our vacations there. This has stayed with me through adulthood. I am every Disney cliché you’ve ever encountered wrapped up in one sappy, sentimental package. I have passed this on to my own family and they’ve embraced it whole-heartedly. When we think of Disney we imagine happy, care-free days full of fun times and smiles and you know what? For the most part that is exactly what it is. There is always the “other part” of family vacations. The bickering… the stressed out and tired parents who are dragging themselves all over the park… and let’s not forget the frustration that comes when even Disneyland shows its dark underbelly. Ok, so Disney’s “dark underbelly” is still all sparkles and smiles but, trust me, it is there.

028We started out our vacation with a visit to the beach. We had a great time. Both boys have been to the beach before but were too small to remember. It was so fun to watch them react to the water and play in the sand. Alex was a little nervous about the ocean at first. Sean took to it like a fish, a fish that made both of his parents very anxious as he’d beg to be taken deeper and deeper where the waves seemed larger and larger. As the day progressed both boys experienced a vast increase in courage while in the water, both a good and bad thing I guess. I’ve always loved the ocean and this is one of my favorite parts of being a parent, seeing the reactions of my children as I share something that I love with them.

The next five days (yes FIVE days) were spent traversing through both Disneyland and Disneyland California. It is peak season so of course we expected it to be crowded but were surprised to find that it wasn’t nearly as crowded as we had thought. A typical day for a family such as ours begins by procuring several maps. Sean is in love with maps, I think it is an Asperger’s thing because he likes to memorize them. He can tell you each ride and the corresponding number on the map without looking at the map for reference. If that weren’t impressive enough for an eight year old he can also tell you the park’s official description of each ride. This he has memorized from the free Disney vacation DVD that I requested to help prepare him for our first visit last November. Disney brings out the best and worst of all of us. We start to see a myriad of stim behaviors. I’ve provided a link to a good explanation of what stimming is.

To make a long story short, these behaviors come out when Sean is anxious, excited, happy, or just plain (you guessed it) over-stimulated. The stims of choice on this trip were repetitive hand flapping and jumping up and down. Now I know what you’re thinking, most kids at that age will jump up and down in excitement. This is different, I’m not quite sure how to explain it but it goes on and on and on… My favorite are the stares we get from people when he combines these two behaviors and looks like a baby bird trying to flap his way out of a nest. The best part? Alex starts to mimic these behaviors and then we are really in for it. There are times when they are both stimming and the adults in the near vicinity are gaping like they’ve reverted back to their own childhoods. I think to myself, “Well, if you can’t beat ‘em, join ‘em.” Then, just for giggles, I start doing it as well. Take that you ogling fools!

267So now we’ve got two stimming children with an audience and then you add the challenges of ADHD to the mix and oh boy does our vacation take on a new tone. Poor Alex can’t remember that he’s eaten breakfast not 10 minutes ago, nor can he remember where we are and what we’re doing. The nice part is that this makes him easy to please. He’ll request one ride and be effortlessly swayed to another because he’s so easily distracted by all that is going on around him. Then you add Greg’s ADD to the mix and, well you can imagine what my days are like. Or maybe you can’t, better yet, don’t even try. It can be stressful, but Disney is one place that it all doesn’t really matter. Who cares that my children are flapping and jumping all over the place like fish out of water? Why bother keeping Alex on track and attentive? What does it matter that Greg is also having a hard time staying focused? That’s right, only the poor individuals dressed up as characters that we’re trying to get pictures with are likely to mind. They stand there so patiently waiting for us to pull it together, good thing they almost always have a mask on right? That way they can roll their eyes all they want and all we see is their pasted on smiles.

At one point I began to realize that Disney herds us around like Holstein cattle and that it doesn’t even bother us! In fact, you’re having so much fun that it doesn’t matter that the employees are dressed in bright colors wielding light wands directing traffic like you were a plane coming in for a landing not a patron waiting for a parade to start. I imagine them saying, “Over here, to your left, now to your right… you are now cleared for landing please plant your bum right here for the best view!”

Oh we love Disney. The sad part? On our fifth day as we walked off of Splash Mountain for the last time this trip we looked at each other and said, “We’re ready for home.” We really thought we’d gotten it out of our system. NOPE! It has only been about 2 ½ weeks and we are already pining over what seems a distant memory. Who knew that I’d be missing the stims? But those stims represent the excitement my boys feel. Their behavior may look strange to an onlooker but to me it looks like too much joy contained in a little body so it spills out in whatever way it can. I miss the days where it didn’t matter that Alex and Greg couldn’t really focus. I miss the fact that Alex was distracted enough to stop asking me whether or not he’d eaten breakfast or lunch every 5 minutes. I miss the fact that I felt really good while we were there. I still had my aches and pains, my gut still gave me crap (pun intended), and my energy levels were low but it was worth every minute! Each night I would go to bed and think, “There is no way I’m going to be able to get up and do that all again tomorrow.” Miraculously I did and enjoyed it to boot!

My only regret is that it is already over. Children are only small for so long. I will miss these days when they are innocent enough to believe the magic of Disney. Pretty soon I’ll have a couple of teenage boys who constantly complain about having to spend time with their sad old mom. Until then I want to enjoy and embrace every moment. Chronic illness be damned. I’m sick of having it steal the best moments of my life away. So I’m not going to let it. I have a beautiful family and I can’t afford to let one moment slip by without appreciating them for who they are and the love and laughter they bring into my life. I don’t really need Disney to do that for me but I must admit that enjoying the sparkle it brings to their eyes sure does a lot to soothe my aching soul.

300My next post will be all full of doom and gloom as I attempt the latest health update. It may take me a while to crank that one out. I’m still processing the recent changes and updates. I keep thinking that I need to get everyone up to date on the latest and greatest but I’m just not in the mood! I started a new medication today as well, the Humira wasn’t working so we needed to try a different biologic. I’ll let you all know how that is going as well. In the mean time I’m going to go flap like a birdie with Sean and explain to Alex that, yes, he has in fact eaten lunch AND a snack for the millionth time. 🙂

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6 thoughts on “Carefully Controlled Chaos

  1. Welcome home, I’ve been waiting to hear all about your trip! The photos sure put a smile on my face!

  2. I am so glad you had a good time! I seen a Humaria commercial this week. with its beautiful promises and smiling faces I wondered how it was working for you.

    • Thanks Christine! I wish that the Humira had worked. I started Cimzia injections yesterday. It is the same type of drug but one that I had not heard of before. Keep your fingers crossed for me. 🙂

  3. I am so happy you all had such a good time and lots of fun. Good memories. It is admirable that you are able to give so much despite your many illnesses! I love the fact that you stimmed along with your sons and gave onlookers really something to look at!

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