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Monday, August 5, 2013

No Ordinary Weekend

From the outside, this past weekend may have seemed like most family's weekends. Aidan was supposed to go to a birthday party for a friend. Alex and Ben were supposed to go to karate. We decided to take the kids to see a movie. No biggie. Just a fun, normal, family Saturday.

If you look at it from my perspective, it was a weekend full of opportunities to practice life skills. 

I knew Aidan would be anxious about going to a party by himself. So I worded the morning very carefully, because if you say even one thing wrong it can set off my little guy's anxiety radar. The party was for a friend Aidan has known for 2 years, at the boy's house, in our neighborhood. All good things- nothing too new and scary. It was a "water" themed party- squirt guns, a baby pool for messing around in, a sprinkler. Sometimes water play and Aidan don't mix, so this was another hurdle I knew he would have to cross that could cause problems. I also knew Aidan would prefer Alex or me to stay with him at the party, but it just wasn't possible this time. 

We signed our card and off to the party we went. Aidan was beyond thrilled to see his buddies. He happily scampered off to play in the backyard, without even a goodbye. That's how you have to handle Aidan- you let him lead. If he wants to say goodbye and give you a hug, fabulous. If not, you have to be ok with that. I learned that in preschool when I wanted to give my tiny sweetie a hug goodbye. If I forced it when he was fine just running off into his day, it would cause an unecessary meltdown. So if he doesn't need a goodbye, I've learned I don't either.

Meanwhile, Ben had had a pretty rough night. Since his panic attacks started two weeks ago, there are nights that are filled with nightmares and anxiety for Ben. Some nights are just bad and none of us get very much sleep. I ended up, after hours of back and forth with Ben to his bed, just crashing on his floor with a pillow. I woke up two hours later with carpet imprint from head to toe on my whole left side. That hurt a bit. But at least Ben was able to sleep from that point on. 

Alex had to wake Ben up for karate in morning, but because he had been up for so much of the night, he just didn't have the energy to go. So he schmupped around in his pj's until after lunch. Poor guy. We finally have gotten his heart monitor fixed. It kept beeping, so the company that monitors the monitors called and said Ben had a faulty wire. We had a new wire shipped out. When that didn't fix the problem, the company said Ben had a faulty monitor. So he was without his monitor for almost a week. Which made him very happy, but made Mama a little worried. So now we have him all plugged in and working correctly. Whew. A few more weeks of that and we'll see what his cardiologist has to say about the results. The panic attacks keep coming, but fewer and more mild, so that's good.
Alex went to karate alone. I had the three non-party-going kids at home. There was a quiet moment, so I had the audacity to pick up the phone and call my parents. Ha. Child Phone Radar went off across the land, as usual. Ella started wailing about stubbing her toe. Jonah yelled from another room over and over with a question he impatiently needed answered NOW. Ben wondered quite loudly if we were actually going to see a movie today. And then, the icing: the mom from the party where Aidan was called to say that he wanted to come home. 

Aha, now I remember why I never attempt to make phone calls!

I talked to Aidan, who was near tears, on the phone and asked him what was wrong. He said he wanted to be done. I zipped over to get Aidan. After he knew I was coming to get him, he was able to relax and have a few more minutes of fun while he waited for me. I had figured he would have some anxiety about being at the party and want to leave early, so this didn't surprise me. I celebrated the fact that he had been able to stay at the party without me at all, and for a whole 54 minutes! This was a success! I apologized to the parents of the birthday boy, but they were fine with Aidan leaving early and understood. Later Alex asked Aidan why he had wanted to leave the party early. He responded that he didn't want to be wet today. There you go. I was happy that Aidan tried to go to the party alone, and was able to handle it for any length of time. 

I had a secret motive for wanting to see a movie with the kids today. Since Ben had a major panic attack at the movie theater a couple weeks ago that led to me taking him to the ER, he hasn't wanted to see a movie again. Ever, he said. I keep talking to him about how you can't let your anxiety rule your life, and you have to be brave and face life head on even if you're scared. Because most of the time that will lead you to incredible experiences and discoveries and joy. So I wasn't about to let Ben never go to a theater again. (Thank goodness I have a major in psychology and a Master's in social work! I was all set to go mental health on his fanny.) 

I wasn't sure how anxious Ben would be about going to the movies again. Every time I had brought it up in the past two weeks, he freaked out. But I calmly and matter-of-factly told him that Dad and I had decided we'd take the whole family to see a movie this afternoon, and I knew he'd be a little worried about having a panic attack again but since both Dad and I would be there, he could sit on my lap the whole time if he needed to and we'd make sure he was ok. He was a little nervous, I could tell, but decided that was ok.

We made it through the movie without rushing off to an ER. That was an improvement. Ben did come and sit on my lap at one point when I think he was feeling a little funky, but then went back to sit with his siblings in their "Kid Row." So we were able to work through some of Ben's anxiety and get him over the hurdle of the first time doing something that had caused a panic attack the last time he did it. Phew. Ben- 1. Panic Attack- 0.
On Sunday we drove to Milwaukee to see grandparents and go to the Wisconsin State Fair. Before we left I had to think through all our special needs requirements. Should I bring the epi pen? Did I have all the doses of meds for all the kids for all the time we'd be away from home? Did I need noise-blocking headphones? Did we have all electronics necessary to make it the one hour ride to Grandma's house without too many meltdowns? Did we have chargers for said electronics? Did we have extra clothes along for messes? Sunscreen? Sweatshirts in case kids got cold? (I know, some of these are not specifically special needs issues, but they're more intense than typical issues. For instance, if one of my SPD kids gets cold, it's like they're dying and it's an EMERGENCY and we must get them warm ASAP. And they will yell and scream and whine and fuss as if the world is ending until they are warm.) Did I have all the emergency supplies we might need- bandaids, itch cream, sanitizer, antibiotic cream, nail clippers (Some of the kids can't handle any kind of hang nail. It must be dealt with immediately.). Do we have snacks in case anyone feels a quiver in their empty tummies and needs something to eat when we are not anywhere where we can get food right away? Do we have drinks in case Ben gets dehydrated and that leads to another panic attack? These things don't sound special-needy, but the intensity with which my kids react to these unremarkable issues is quite special-needy. Any small problem in any of these areas can cause a meltdown the likes of which the Wisconsin Fair has probably never seen.

I am exhausted before we even hit the road!

We had a great time at the fair. But we should have known we were staying a bit too long. Jonah started to get overwhelmed by his tiredness, the noise level, and the people jostling about him, touching him. Aidan was pooped from walking and demanded Ella's stroller. Ella was a saint and decided to hold Daddy's hand and walk a bit so Aidan got to go for a ride. Ben was getting tired, hot, fiesty and snappy. 
The ride home from the fair was. not. fun. It's an hour, for crying out loud! You'd think some almost-11-year-olds could handle an hour-long ride! But no. It was a pretty miserable hour. Yelling, screaming, phsyical fighting, name it, we have it in the car on a regular basis. If you get into the special needs mindset, these behavior problems happen because the boys are bored, or hungry, or overly tired, or over-stimulated, or having a mood swing, or sick...but that doesn't make it any more enjoyable to deal with. 

So we made it home after a fun, long, tiring weekend, to all crash into bed and call it a day. From the outside, it may have looked like we were a big family having big fun all weekend. But on the inside, it was work to make it look like that. And on the inside, there were deeper reasons for everything we did than just having fun: A chance to conquer anxiety. Exposure to sensory input that doesn't normally happen. An opportunity to deal with changes in our schedule. It's a lot of work to have kids. It's a lot of work to have kids with special needs. But on a Sunday night, when everyone is in bed and I'm able to reflect on all the "normal" things we did this weekend, I'm happy that we can at least show up for life. We may be messy, anxious, worried, and irritated for some of it, but we show up! I try to remember it's awesome that my kids got to experience a birthday party, a movie, a drive, and a fair this weekend! They may not have stayed for all of everything, but they showed up. Maybe that's the most important thing.

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