Decisions, decisions… Autism vs Parkinson’s… What should I do with my Saturday afternoon?
March 31, 2012
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Now Reading: Decisions, decisions… Autism vs Parkinson’s… What should I do with my Saturday afternoon?
March 31, 2012
Being a grown up sucks! What should i do with my Saturday afternoon today?
The 2 choices i have in front of me today are not the kinds of things you dream about when your a kid or even a teenager and you think about all the cool things you’re gonna do with your weekends when you grow up.
And they are not the kinds of choices that you dream about when you think about having kids.
I am firmly part of the “sandwich generation” sandwiched in between taking care of my kids and taking care of my aging parents.
And if you’ve read my fb page and blog often you’ll know that I’m also sandwiched in between severe autism (my son) and advanced Parkinson’s (my dad)
So my choices for this afternoon? An autism birthday party at a bowling alley VS. going to see my dad in the nursing home who I haven’t seen since last Saturday.
Why haven’t I seen him in over a week? Because just like some with autism, routine is key with my dad. When he first when into the home I used to try to stop by for an after work visit… That would be after dinner for him and the fact that he had a visitor that late in the day really confused him. Lots of elderly people with Parkinson’s or Alzheimer’s or dementia have whats called the “sundowners syndrome” where they get confused and disoriented after the sun goes down…or at least more confused and disoriented than normal.
And I witnessed this BIG TIME when I would visit after work. So I realized early on that visiting him after work, while making me feel less guilty about not seeing my dad for _ days, was not helping him at all. In fact my late visits were confusing him. They were not quality visits. So I abandoned the after work visits.
So really the only chance I get to see him is on the weekends. So why can’t I do both? BD party & nursing home visit?
Because my mom & sister who see him alot more than I do (which adds to my guilt) have him on kinda a set schedule. They usually go in the middle of the afternoon after his lunch and stay with him til his dinner time at 4:30pm.
If I went today before the bowling bd party which starts at 3pm I’d have maybe time for a 60 minute visit, maybe 1:45-2:45 and that kinda throws him for a loop too and he’s always checking his watch and getting overly anxious about the time. And that’s not a quality visit either. So short early afternoon visits are out unless somebody else is already there visiting and I can duck in & out.
So doing both nursing home & bd party are out. So I need to choose between the two. Decisions, decisions.
I will readily admit that there’s sometimes when I choose to visit my dad on a Sat or Sun afternoon because I’m looking to escape for a few hours. Isn’t that scary? Considering visiting your dad in the nursing home as an escape… But sometimes when autism rears its ugly head in a BIG WAY I’ll choose visiting my dad in the nursing home and dealing with all that comes with that (more than you want to know) vs hanging out with my wife and son on a Sat or Sun afternoon.
Now that’s not what I thought of as an escape when I was in my 20s, that’s for sure. LOL
But as I’ve recently written, Kyle’s been in a really good place behaviorally lately. And while he might not love bowling or get anything out of it, the wife and I always look forward to any occasions to get all our crazy ASD friends’ kids together. So while the bowling alley will probably be very challenging and the wife and I will be playing goalie and/ or tag team parenting all afternoon, I’m actually looking forward to seeing all the autism moms and dads (and kids 🙂 for a few hours.
So I guess I’ve made my decision. Bowling bd party and I’ll go see my dad tomorrow and wish him a Happy Palm Sunday (and have an escape from palm sunday dinner at my in laws for a few hours 🙂
Just kidding! (if any of my in law’s are reading this…)
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).
3 People Replies to “Decisions, decisions… Autism vs Parkinson’s… What should I do with my Saturday afternoon?”
I just discovered your blog! This post is so funny for me. I was sandwiched between autism (my daughter) and Parkinson's (my mother in law) for several years. My mother in law was diagnosed about the same time as my daughter. Of course my husband and his dad thought it was a great idea to send my mother in law down to my house for week long visits once a month, right about the time my daughter was really struggling with autism, and being a toddler, and being non verbal, unable to walk, and a poop smear bandit. My husband would go to work all day and I would be stuck in the house with an autistic toddler and a mother in law with rapidly progressing Parkinson's / Lewey Body Dememtia. Fun times. UGH! And then of course I felt guilty because my husband was losing his mother. Eventually they caught on that maybe this arrangement was not too good for me and only sent her to visit when my husband could be home, too. SO – my point is, I can totally see the irony in visiting an aging parent in a home with Parkinson's as being an escape from autism. When I have hard autism related days, I cal it "Autism up my butt" and I can't deal. Anything would be an escape!
I can see the dilemma on that one for sure but am glad you found a way you could have both afterall 🙂 A chance to catch a fun event with your son and wife and a few friends and the next day still get to see your dad. 🙂
Hope that you had fun at the party. Hope your in-laws have a sense of humor:)
"The child psychologist who thought she had all the answers to parenting until she became one herself." http://www.themommypsychologist.com