Deja vu

Do you hear that? It is peace and tranquility. We are home. Yes! Home in our own house! We actually slept in our own beds last night!!!! We got home yesterday from a 5 day visit with the extended family. It was a busy time. We had a 4th of July celebration at a lake, a birthday party for a friend's 2 year old twins, and a wedding!

Each event was an experience. I could write for hours analyzing the ups and the downs. But I think I can sum it up with a summary of our day at the lake.

This was a bittersweet experience. I remember 3 years ago attending my uncle's 4th of July bash. This was pre-diagnosis. Three years ago JP FREAKED out at the fireworks. We knew this couldn't be "normal". There was clearly some severe anxiety wrapped up in this little guy. Little JP planted himself inside the house and screamed if anyone opened the door. Three years ago, this was a very hard day for us. This year it was a very hard day again.

Three years ago he shrieked and was inconsolable. This year he initially hung around outside and even showed interest in the lake. Still he was very nervous and cautious. Then the cousins brought out the fireworks. He froze like a deer in the headlights. He watched as they prepared for the first boom. It was as though he knew what they were doing but couldn't believe it. I had tried to prepare him for fireworks. I got down on the patio with him and tried to talk him through that first explosion. We cuddled together as we expectantly waited for the boom.

BOOM!

He shrieked. His hands flew to his ears and insisted that they (the fireworks) go away. "Fireworks are for night time" he said over and over again as he ran inside the house. His hands squeezed over his ears whenever anyone opened the patio doors. And if anyone made the mistake of only closing the screen door (and not the glass door) he quickly ran to to the door to remedy the situation.

Yes, I know we have made progress. Last year he drove around with me in the van and watched the fireworks in the sky. We parked and watched from a distance while we ate popcorn. We have checked out books from the library about fireworks and he can practically tell you how they are made. But these experiences are about the light up the sky glorious fireworks. Not the nuisance boom-boom-bang firecrackers. He absolutely does not get the day time firecrackers. They scare him. He can't identify when the boom is coming. I have to agree with him though--what is the point? Atleast the night time sky fireworks are pretty to look at.

It was a hard day. Once the fireworks started JP was out of sorts. I felt bad because my uncle told the cousins that they couldn't do the fireworks. But that didn't feel right. They were at Grandma and Grandpa's house (my aunt and uncle) for the 4th of July. They should have fireworks. Besides everyone around us was letting off fireworks. It didn't really matter to JP if his cousins joined in. He was a prisoner to the house either way.

Ultimately, we took our boys for a ride in the van around the lake while the cousins did their day time fireworks. We came back for the barbecue. We ate inside. Most of the family took a few minutes here and there to hang out with us inside. But this was a barbecue. This was a barbecue at the lake. This celebration was designed to be outside. We attended the event and they did their best to include us but we really didn't belong there. We left well before dark.

Again, I know that JP has made huge progress. I am thankful that he was now able to explain his feelings. I am just sad that these fears exist. Every other child there was drawn to the booms and bangs. His cousins kept peeking in a back bedroom where Grandpa had the entire bed covered with fireworks. They were eagerly anticipating Grandpa's fireworks display that night. When JP saw the room he freaked out and we had to shut the door in order to calm him down.

On one hand I look at my wonderful boy and I see how far he has come. He is doing amazing. Still it was painful to see that in some ways we are exactly where we were three years ago. As much as I wanted to be there and be part of the family, I couldn't help but feel like an outsider. I couldn't help but feel like we were limiting their celebration. Don't get me wrong. They didn't make me feel like we were not welcome. Quite the opposite. Still I just felt bad curtailing their fun when JP wasn't really enjoying himself either.

So I can't help but dwell on the concept of inclusion. Is inclusion really what it is all about? We were included at this event but no one really got to enjoy themselves. JP was uncomfortable. The rest of the family was restrained. I just couldn't help but think that they would be having more fun if they didn't have to accommodate us. And before you think that I am elbow deep in a pity party I need to say that a huge part of my concern was also that JP would have been much happier having not been put in that situation. He really shouldn't have to be somewhere that he is clearly that uncomfortable. But this was our family and this was a family event. Shouldn't we be there?

So my question is this...where do we draw the line at trying to be included and when do we say no thanks?