Sometimes life just really sucks and this is one of those times

Today kinda sucks because we are going to be missing out on my Grandfather’s birthday party.  I had every intention of going but so much in our lives is unpredictable. 

The party is about an hours drive away, which isn’t a huge deal but it’s also not right around the corner.  Gavin’s in the midst of a psychotic break and I’m not comfortable putting him in a situation, where be it through excitement or stress, he gets worse. 

For kids with Autism, bi-polar or Schizoaffective Disorder, it doesn’t really matter what form the stimulation comes in, it’s going to have the same stressful impact.  I know that might not make sense but it’s just the way it is and with Gavin already struggling, I can’t in good conscience, put him in a situation that would possibly make things worse for him and subsequently us.

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Frankly, that’s really a moot point anyway because three of the five of us are running fevers and seem to be coming down with something. 

I’m writing this at about 2am and both Elliott and Emmett are still awake.  That makes three nights in a row that Emmett’s not been able to fall asleep. 

I know Emmett’s not feeling well and I do think that his fever is caused by illness this time and not a fever flare because both he and Lizze have the same symptoms.

This is one of those situations where I know we’re doing the right thing but at the same time, I feel so bad that we’re missing this get together.  I know the boys would have had fun and it would’ve been really nice to see everyone. 

I know that we tend to shy away from things like this because of the fallout afterwards but this would have been an exception. 

The circumstances being what they are, I’m trying to limit Gavin’s excitement and we have him on the equivalent of a sensory diet, with the exception of his tablet.  We’re hoping that by limiting his stress levels, we can help him find his way out the other side of this psychotic tunnel. 

It’s what we’ve always been told to do by his doctors but it’s just really shitty timing. 

Normally, I feel good about doing the right thing, regardless of what it looks like to everyone else but this is a rough one for me personally.  🙁

Everyone says they understand but sometimes I wonder if they really do or if they’re just being nice…. 😔

12 Comments

  1. Braden

    There are only so many times you have left with your grandparents; I would consider trying divide and conquer more with family events, especially ones involving them. Because, while they might understand the situation, it still stinks when for them when you don’t show up…and it’s hard not to eventually take it personal. Just like you would if they stop extending the invite because you rarely (if ever) show up.

      1. Braden

        I don’t know what I posted that could be considered ‘black or white’ but it’s my two cents. With a family of five you will sometimes need to divide and conquer. That is a logistical fact.

        I have difficulty seeing family too. Sometimes you need to do what you need to do…and sometimes going is what you need to do.

        1. Black and white meaning it’s not that simple. Dividing and conquering is often times easier said than done for families like mine.

          That being said, you’re absolutely right about the importance to seeing family.

          The truth is that this is a major issue for many Autism families. It’s such a difficult thing to navigate at times.

          In this instance, the fact that people are actually sick sorta takes the choice away.

          Again, your comments are well received and thank you for taking the time to share them…

          1. Jimmy Rock

            The fallout from these visits that you referenced shouldn’t be underestimated. I’ve been there. However, that doesn’t mean that it’s an “all or nothing” proposition. In addition to the suggestions of dividing and conquering, another thing to consider is to simply limit the time of the visit. A shorter visit means less stimulation and less fallout. Perhaps you can arrange with your host for a “quiet room” in the house to be available to you. Or scope out a nearby park to your host that you can go to for a break. Your kids should be learning about their challenges, and learning to manage them. The overstimulation that comes with these visits is one of these challenges. Explain why your visit is going to be shortened, or why you’re taking breaks, etc. And when the are going through the ensuing fallout, remind them where this is coming from and explain that you will be making accommodations during the next visit so that the fallout is less. If you choose to avoid these situations completely, you not only deprive your children time with their family, but you also lose an opportunity to teach them how to manage and own their challenges. Sure, it’s easier on you to avoid the situations completely, but I’m not sure that’s always the best solution.

            And as far as what everyone else thinks, f- ’em. Do what’s best for your family, whatever you decide that might be.

            1. I wish I could give your comment a million thumbs up but instead I’ll pin it to the top. You are absolutely right. It’s tough when family lives out of town because the kids don’t do well in love car rides but that doesn’t mean we can’t focus on hitting as many local things as we can.

              What I appreciate the most from your comment is acknowledgement of just how bad the fallout can be. People tend to assume that if the kid does well while they’re at the event, then we’re in the clear and that’s not the case. Sometimes it is but that more of the exception to the rule.

              We’ve gone to a few family things, just since Lizze has been home.

              You’re right about just limiting the time and maybe the frequency of these events but it’s really important to get out whenever possible, even for a short visit.

              We almost always attend things at my parents house and will do the same for Lizze’s parents as well. It’s just the ones that are an hour or so away that tend to be the hardest to pull off.

              Thanks Jimmy and I’m glad to see you back… ☺

    1. Lizze is sick as well and can handle the kids on her own for a little while but she still has some limitations. If it wasn’t an hour away, that could have been possible but it’s too far away.

      It’s just this particular situation. When they are closer to home, that might work out pretty well… Thanks Sophie…

  2. Something else also occurred to me as I’m reading the comments here. There are also many times where we plan on going but something happens at the last minute that prevents us from going. That’s more frustrating for me than just not being able to go…

    People sometimes take it personally when we have to cancel at the last minute and understandably so. It’s just one of the reasons I hate making plans. Our lives can be so unpredictable that it feels like something good always comes up…

  3. In this particular case, Lizze isn’t feeling well and while she can handle the kids for a short time in her own, she still has physical limitations and I’d be too far away to return home quickly if needed.

    Again, it’s just things like this that are out of town that tend to be really hard to pull off.

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