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Our Lives Are NOT A Daily Struggle. We Can Take On More!

I’ve been meaning to write a post like this for a long time.  And I’m not sure where it’s gonna take me yet…  Hopefully it makes sense.

The reason I’m writing this post is …I think that because I have this blog and because I write about all the ups and downs in our special needs lives that many people get the impression that our lives are a constant struggle…  that every day we are living a high wire act of stress and emergencies… and nothing could be farther from the truth…

And when I say many people, I mean many people who read the blog and don’t know us… and some people who read the blog and kinda know us (like co-workers, old friends), and a few people who are close friends & family and should know that we aren’t really that stressed on a daily basis…  🙂

I have two examples to share…of people thinking they have a good idea of what we are going through…

1) A coworker was telling last week me how his wife went through quite a scary cancer scare a few weeks back.  Surgery, a stay in the hospital, some real scary stuff.  And as he was telling me the story he was looking at me like “you know what I’m talking about” and then he even said “i’m sure you could appreciate what that was like”

And I said “no, none of the stuff we ever deal with for my son has ever been life or death… that must have been really scary… i have no idea what that must have been like”

And it’s true… We’ve been thru some scary procedures & surgeries with my son… but none of them were life or death…  yes the seizures are scary, but most of the stress that comes with any hospital stay with the king is whether he is going to behave and be a good patient.

2) The second example is even harder and more in line with what I’m talking about and what this post is about.  My uncle passed away this April.  He had lots of medical issues.  He lived very close to me.  In fact, you could say that I was the relative that lived the closest to him.  And we were close  emotionally too.  We would see him every couple of months… he was in our lives.

In the year before he died, my mom would tell me stories about how he had to go to a doctor appointment or even a trip to the ER and needed a ride, but asked a distant relative to drive him.  And I would call him and say “Unc, I’m here.  I’m close.  I get home from work at 6:30pm.  You can always call me.  I’d be happy to drive you.”

And I would always hear from him, “but I didn’t want to bother you… especially you… you’ve already got so much on your plate…”

And I would think in my head?  Too much on my plate?  What does he think goes on in this house?  I get home from work at 6:30.  The king is usually asleep by 8:30, and I’m sitting on my couch picking my nose and watching “Survivor” and “The Goldbergs” til 11pm.

So those are my two examples…

So let me say loud & clear, every day raising our autistic and epileptic 13 year old is not filled with stress & emergencies.  Every day is not a high wire act.  It can be really quiet and boring around here.

And I think wifey would have plenty of her own examples.  There’s been times when she would say to people (relatives, close friends) “if you ever need a sitter for your kids, I’d be happy to do it…”
or even “if you’re ever in a bind and need someone to pick up your kids from school let me know…”  and they either yes her but never take her up on her offer… or they look at her like she has three heads, or they say something similar to what I hear, “thanks, but that’s ok… you’ve got enough on your plate…”

So let me say loud and clear that we both have free time…  We both have more room on our plates…

Our families know by know that when the really stressful times do come and when we do have too much on our plate we always let them know and ask for help.  We are not shy about that…  🙂

However, for the most part, yes my son, can be quite a handful, and can have lots of challenging behaviors…and his weekly seizures can be scary as sh-t…  but even at his worst we’ve got time on our hands to take on more, we’ve got room on our plates…

And since we started giving him melatonin back in 2009, he normally sleeps well at night, and now since seizure and seizure meds entered the party in 2012 he sometimes sleeps too much, so we really do have a lot of time on our hands.

And when he is sleeping for those 11-12 hours a night it’s not like we are up at all hours searching the Internet and stressing about autism and epilepsy.   We were never those kind of parents.   Ok, maybe we were a little more like that when we were younger parents, with a younger kid, and this autism world was more new to us.

However, now, for better or for worse, we are sitting home watching tv at night when the king is asleep… and besides writing this blog I really don’t think about autism and epilepsy that much.

So, basically, now we live each day as it comes…. and each day is not a hire wire act of stress and emergencies..

And our lives are not a constant struggle.

Yes, we have stress in our lives.  Yes, I’m on antidepressants…  but I’ve come to the realization recently that I’m quite positive that I’d be on antidepressants if we had typical kids… and perhaps I’d be equally stressed, but over typical parent stuff…. that’s just my internal make up.

I think that’s all I want to say… not sure what the point of this post is… I think that my first example above about my friend with the wife with the cancer scare just brought this post to the forefront of my brain.  The fact that he thought that because I had a a kid with special needs I would know what it’s like to have a spouse go thru a cancer scare just made me realize that maybe people don’t really know what our lives are like…  Maybe me having this blog makes people think that we live and breathe autism and epilepsy and special needs issues 24/7… and nothing could be farther from the truth….

And my 2nd example about my uncle… it just always kills me that some of our friends and relatives feel like they can’t lean on us / depend on us more. It kills me that they think they can’t call on us in case of an emergency because they think we’ve got too much on our plate…  To think that my uncle needed a ride to the hospital and didn’t think to call on me, and all I was doing was sitting home watching “Better Call Saul” is tragic.

So I will say again, for the last time.  Our lives are not a daily struggle.  We have room on our plates.

I’m sure as the wife and I age and in 10 years or so as our son grows into a 6 foot tall, 175 pound adult, and ages out of the school system our lives are going to be a lot more stressful and a lot more of a daily struggle / high wire act…  so lean on us now while you can!  Cuz we will definitely be leaning on you in 10 years when those crazy times come!

That’s all I’ve got…


Written by

Frank 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” :-).

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3 People Replies to “Our Lives Are NOT A Daily Struggle. We Can Take On More!”

  1. Anonymous

    Hay life is what it is with our son he is a trip he is 17 now and wow and yes we have had hard times and good times shit he just started to talk in the last year or so not real well but some god blessed us he is one of the best people i have every knowing. and at this time in our home we have ABA therapist in our home 4 days a week 20hrs per week . ABA is so cool my son is changing so much with him

  2. LBK

    I love this for the hope that someday I will be the parent that can take on more. Right now, we are still figuring it all out, and the littles just aged up to 3 and 4. I am behind the 8-ball all the time, so hearing that I will someday, maybe, possibly watch adult TV again is fairly inspiring! My Aspie husband whines about missing TV all the time, and he can't stay up with the kids, so I'll pass this on to him. Really appreciate your writing! I just discovered your blog.

  3. Anonymous

    I love this post! Our situation is exactly the opposite. We made the decision to adjust our lifestyle so that my wife can stay home and manage all of those activities including my son's therapies, diets, meltdowns, etc. It's a full time job that I do not envy but people are always trying to add more to it. Can we watch their kid afternoons? Can we watch their house while they are on vacation – we don't get vacations btw. Why don't we go an visit them (family)? Maybe we can help get their kid on the bus in the morning? It's as if they imagine wifey hanging around the house or something. Meanwhile, she's hyper busy managing schedules, clothing, food, medications, therapy sessions and the like. It doesn't mean that we can't be there for anyone but it does mean that we can't be there for everyone:)