Getting Back To Our Lives & Living Our Dreams
January 13, 2017
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Now Reading: Getting Back To Our Lives & Living Our Dreams
January 13, 2017
This might be a weird post and I might take a lot of flack for it. However I just had to get it out because it’s something I’ve been thinking about for a long time.
The King is now 13 years old and we love the school he’s in. And he can be in that school conceivably for the next eight or nine years.
And, knock on wood, his seizures are on a somewhat predictable schedule that we can manage, and his behaviors have been in check.
So basically everything at our house with regards to the king has been pretty mellow for the past year or so. So, in a weird way this past few months has felt like wifey and I getting back to our lives and living out our dreams.
And unfortunately, the king isn’t much part of any of this.
What do I mean by all of this? What is getting back to our lives mean, and what does living out our dreams mean?
Well, let me talk about wifey first, and then I’ll talk about me.
Wifey, has been a stay at home mom since the king was born. I don’t think that was always going to be the plan. I think she would have gone back to work at some point had we had a “typical” child.
However, the king was diagnosed quite early and when he was in early intervention our house was a revolving door of therapists and teachers. There was one stretch where he had almost 40 hours a week of therapy. So working then wasn’t possible.
And as he got older he was quite a challenge behaviorally, and she would get frequent calls from his school to come in for this or pick him up because of that…so her working then didn’t seem realistic.
And then just as we seemed to feel like we understood the autism world, he entered the epilepsy world when he had his first seizure in 2012 at the age of 9…. and she had lots of new doctor appointments to manage for the epilepsy, with still some crazy autism behaviors to deal with… remember his breath holding?
All this to say that the idea of wifey having a job throughout all these years just didn’t seem feasible. I wrote more about this HERE.
However, fast forward to now, and things are going pretty well around here lately, and we NEVER get calls from the school anymore. So, it’s really been kinda boring for her during the day…
and of course boring is great, but still boring.
So for the past few months, for the first time in a long time, she’s been trying to figure out what she wants to do with her days while the king is in school.
She’s thinking about getting a part time job. She is thinking about getting back to her life.
What kind of job? How many hours? How many days? All of that is unknown. And there’s no timetable for this.
And we know full well that the king could have a set back next week with regards to epilepsy or autism or something else (god-forbid) and this concept of her having time / energy for a part time job could go completely out the window.
However, just the idea that right now things are settled enough in our lives for her to even entertain the idea of getting a job is HUGE! It might not seem huge to many of y’all, but it is HUGE for us.
So that’s how she’s thinking about getting back to her life…
Now, how is wifey living her dreams, you ask?
Well she has been rehearsing for the past year and now has three gigs under her belt as the lead singer of a rock ‘n’ roll cover band / bar band.
It’s something that she’s always wanted to do but never pulled it off. And it is been great for her mentally and spiritually.
She’s the lead singer and she’s accompanied by four middle-age dads. That’s right my wife leaves me once a week to go rehearse with four other men. Am I the best husband or what? 🙂
They’ve been rehearsing one weekend night per week, and now that they have 40+ songs under their belt they’ve been booking a few gigs at bars in our local area. And gigs at bars generally run from 10pm – 1am, just FYI… 🙂
All of this has been a great outlet for her and a great release for her. And because of it she’s exposed the king to a lot more different types of music because whenever she has a free moment she’s singing / rehearsing… in the car, in the kitchen, in the living room, etc.
So that’s wifey’s story…
And me? How am I getting back to my life?
Well, as many of you know I work for Sesame Street and in my blog post when I announced that I worked at Sesame (read HERE) I mentioned how I used to travel internationally before the king was diagnosed with autism.
I really enjoyed traveling and working on Sesame Street’s international co-productions around the world. However, due to his extreme needs I stopped traveling internationally in 2006. It just didn’t seem feasible to be half way around the world. If there was an emergency, what would I do?
However, at the end of January I will be making my first international trip for Sesame Street in 11 years! I will be traveling to Abu Dhabi in the United Arab Emirates to work with the local production team there as they begin production on the second season of Iftah Ya Simsim, our Arabic Sesame Street co-production.
This was not an easy decision for me. It’s the threat of seizures now that scares the sh-t out of me, but this opportunity presented itself, I was asked if I was interested in doing it, and wifey and I had a sit down to discuss it.
And she, with the help of a few co-workers, convinced me to put my toe back in those waters.
I can’t live in fear, I can’t always continue to wait for the other shoe to drop. Odds are, nothing will happen during my time away.
As one of my co-workers put it in an email to me.
“If you can swing being away that long in terms of your son, then Frank, you should do it. There won’t be an opportunity like this …kind of ever. In looking back, you won’t remember that week as any different from any other in your life. But you will if you are in Abu Dhabi.
That’s how I look at these kinds of risks when I am confronted by them: will the experience contribute to my, I don’t know, knowledge of the world; the richness of my life? If yes, then I do what I can to overcome the unknown and do it.”
So I said yes, and will be somewhat getting back to my life working on Sesame Street international co-productions. I will be leaving for Abu Dhabi on January 30th and returning on February 8th.
And I am extremely excited about the work, but I am also extremely freaked out about the flying, and the being away from home for 9 freaking days.
My saving grace? When I used to travel years back, there was no social media, there wasn’t really Facetime or Skype either. So, I like the fact that I can be reached on my iPhone at a moment’s notice… and I already told wifey that I want to have a video call with the king each morning at about 7:45am before he gets on the school bus. I picked that time because that is literally the only time during the week that we will both be awake at the same time (7:45am in NY = 4:45pm in UAE).
Anyway, I’m excited to be going, and excited to be taking all of you with me as well…excited to be writing blog posts, and posting pics & video on my AD FB page from Abu Dhabi!
So that’s how I I’m getting back to my life..but how am I living out my dreams?
This public speaking as Autism Daddy is me, in a weird way living out my dreams.
When I was High School I was in school plays. When I was in college I was a disc jockey on our radio station, and hosted several programs on our college tv station.
After I graduated, I almost took a stand-up comedy course, and had fleeting thoughts of pursuing that.
However, my career, first at MTV, then at Sesame Street has become a “behind the scenes” career.
The idea of writing this blog, and now especially me going around the country and speaking as Autism Daddy has scratched that itch that I used to have for performing on stage, or on screen.
Now, I never envisioned that I’d be talking about autism…but I’m just dealing with the hand that I was dealt and the comedic material I have in front of me.
I try to make my presentations really fun and funny, somewhat like a stand-up comic would… and I get that same excitement before I take the stage at an autism conference that I used to get before a play in High School…
So, in a weird way, you could say that thanks to my son having autism…I am living out my dreams! (But as you know I’d trade it all in a heartbeat. I’d love to be living a more typical life…)
Ok, so that’s the story for wifey and me…. So what about your son you ask?
Well, for better or worse, he’s just kinda going with the flow you could say. On paper, you could say that he’s pretty easy to parent these days. During a typical school week he is out of the house from 8am – 4pm. Wifey takes him to special needs activities after school on 3 of those weekdays. On Saturdays he’s got special needs swim & music. But besides all that, he’s just a tv / ipad junkie, and then he sleeps about 12 hours a night these days from about 7pm – 7am.
So, because of all of that sleep time, and because of the fact that he’s fairly mellow and goes with the flow these days, wifey and I have a lot of time on our hands… time to be in rock bands, time to write blog posts, time to travel, etc.
And sometimes, when wifey or I are off living our dreams (which normally we’re not doing together by the way) I think that maybe we’re being too selfish… that we should be engaging our son more… but he really does present as a lazy teenager who doesn’t want to do anything.
And if he’s gonna sleep 12 hours a day, and be ok with us living our dreams why shouldn’t we take advantage of the situation…?
…especially because we pretty much know this good stretch is not gonna last forever…
Sometimes I feel like we are racing against time…and time is not on our side. Maybe that’s a morbid way of thinking but I feel that as the king gets older it’s going to be more and more difficult for the wife and I to be selfish… I mean, in 9 years we’re going to be caring for a 6 foot tall adult who’s not in school anymore!
So, when the king needs more of our attention he knows that we will be there for him… but for know, while he’s giving this the opportunity, I feel that wifey and I should cram in as much life & dreams as possible.
She should rock out! I should travel! Maybe once in a while she & I can do some of this together! And maybe at some point his majesty will be at a place where he enjoys this stuff too, and can join us! I look forward to the day when I drag my 21 year old to a bar at 10pm at night to watch his mom sing (and I can buy him a beer)!
Anyway, I’m going to end it there. This post is all over the place. Hope it makes sense… and hope I don’t take too much heat… (actually I don’t care) 🙂
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” :-).
11 People Replies to “Getting Back To Our Lives & Living Our Dreams”
It was quite the breathe of fresh air when I started doing my own thing again. And even though my kid is still quite young and there is quite alot of need we manage to squeeze in any moment we can even though it might look a little different at times. Loved hearing about what your wife is up to BTW- that is awesome.
Getting on with life is a healthy & wise choice for both you & your wife. Autism is all consuming and getting caught-up in it is all too easy as the years fly by (my daughter with autism is now 26). BTW, I heard Abu-Dhabi has a big school for autism based on US model. Maybe you can offset any guilt by visiting 😉
Freakin' autism – makes you feel guilty even when things are going well! Have fun in UAE. Congrats to your wife. Live life. The important thing is, you know you will be there for your wife and/or son if they need you. Truly selfish people don't consider others' needs. I am seizing the day (as it were) too. My husband and I are thankful to have people who are healthy and able to watch our sons so we can get away together. Or separately (headed to Mexico tomorrow for a girls trip). In nine years when my boys are fully out of the school system, that will be a big change in our lives. But, who knows? Maybe there will be something great for them at that time in their lives – the autism world has changed tremendously in the 11 years we've been in it.
This is one of your best posts, AD… and I've been following you for years. Thrilled for you and your wife to hear how well things are going. Take advantage of the times – it will only make you a better parent 🙂
Good for you and your family. Personally, I think it is going to get better and better for you guys. My soon to be 18 year old son has become far more chilled the older he has got. Enjoy.
Go for it! Live your life and pursue your dream! You are still an attentive dad and a loving husband, but having time to focus on your needs is critical to stay positive (and mental). There is a period of stabilisation in almost any diagnosis when you learn how to cope (in fact you become a pro in it), when you realise that you can handle it and move on. Grab this opportunity and milk it until you have butter, dear Daddy!
I totally get this! As my daughter has grown I'm becoming more aware that her life is hers and I need to take care of my own. It's good for her if I do. I've started writing, self-publishing and I work (as well) from home which is flexible, so that helps.
Thank you for writing this blog. Going to share it with a couple of thousand parents on the CTFSN FB page now.
Happy for you both! Please think about using your platform to advocate that all kids have a school like your son. All kids deserve a good school that treats them well and understands them.Please do something to help others all over the USA. You are very lucky to have a great school. Please write a blog on how your sons meds have changed over the years. I know he was on a few for behaviors. Were you able to take him off all behavior meds when he started seizure med? Please please write a blog detailing his med journey. Is he now med free except for seizure med? Did you guys have to slowing wean him off his meds if he was taken off. I know you have touched on his meds before but I think they have changed and would love an update and I would love to know how things went when you took him off and how it was done…please update us…I have been reading you since my son and your son started having seizures around the same time..just wondering what the his med deal is and how you got there and how was the downsizing…how was his behavior etc….at that time?..thank you ps kiss the count for me lol
You two both NEED a life outside of autism and yes, the king! You both have needs that need to be met, goals to reach,dreams to dream. As parents we tend to put ourselves in the back seat. Glad you two are daring to step out of a place of comfort.
Every parent needs to do stuff for themself! All the more so for special needs parents. The King is having his needs met. May your wife rock on joyfully. Hope you enjoy your traveling, Autism Daddy gigs, and growing Sesame Street. More power to you!!!!
No heat from me… I hope we get that time too, together. We've got two sons with autism and yeah, there's probably going to be 2 tall boys looking down on Mommy, so when work sends me to travel, I'm grateful my other half sends me packing. Hopefully at some point we'll be able to do stuff like that together. That's my dream. I'd love to know my babes had dreams so if they do, I'll lead by example and follow mine too ❤ Enjoy Abu-Dhabi!! Jess