Friday, January 13, 2017

Getting Back To Our Lives & Living Our Dreams







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) :-)

THE END









-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!



Sunday, January 1, 2017

Tales From a New SLP: A Guest Post from My Niece Francesca



Francesca at her undergrad graduation in 2014


Hey guys!  Happy New Year!

I am so excited to start the new year off with my first ever GUEST BLOG POST from my niece Francesca.

Francesca (or Cesca for short) went to graduate school to be a speech language pathologist and just started her career.   At Christmas dinner I overheard her talking to another family member about her experiences as a new SLP, dealing with little kids, and the expectations of their parents.  

And I was blown away!  

I mean I knew that she went to school for this, but I was really blown away by her knowledge and her insight.  I thought to myself "wow, she really knows her sh-t!".  

And then it hit me!  She should be writing guest posts on my blog!  She can have some wisdom to share with some of you because she's a new SLP, but also because she's coming from a unique place of having autism in her world for over half her life (thanks to the king).

Anyway, late on Christmas Day I asked her if she'd be interested in writing some guest blog posts in 2017 and she jumped at the chance.  

For her first assignment I asked her to write an introductory post to tell you all a little more about herself, and to show how having the king in her life influenced her choices.  So without further ado, please welcome my niece Francesca to the world of blogging and to the Autism Daddy family.

Take it away Cesca!






Hello Autism Daddy Family! 

My name is Francesca. Autism Daddy is my uncle and I am SO EXCITED to do some guest blog posts for you! 

For my first post I thought I’d tell you a bit more about me:
• I’m 24-years-old 
• I just graduated with my Master’s degree in Communication Sciences and Disorders in May 2016
• I’m a new speech-language pathologist  
• I’m currently an early intervention (birth-to-three) service provider 
  -- Working in early intervention means I am usually servicing children pre-diagnosis. As a rule of thumb, children under 3-years-old do not receive a developmental diagnosis because they are still in a period of huge growth.  
   -- My caseload currently includes 34 children (and counting!) who I see for individual therapy sessions. Some children are seen once a week while others three times a week. 
   --Half of my day is spent at a facility where I treat with other professionals, including occupational therapists, physical therapists, and other speech pathologists. The other half of my day is spent traveling and doing homecare. 
• I’ve also worked with preschool, elementary, and high school populations. 
• And most importantly (in my opinion!) I’m the king’s cousin
Oh my cousin.  The king! 

MANY of the decisions I have made in my life all stem from my cousin. His life has had a huge impact on my professional life and personal opinions. 

Let’s go back to the beginning shall we? 

I am extremely family oriented and have been since I was very young. So whenever I had a free moment, I spent it with loved ones. 

I think I was about 12 years old when I started “helping out” with the king (so I guess he was under 2 years old) although in reality I was just along for the fun I knew we’d all have. 

We’d watch  movies, eat lunch, get an Italian ice, go to the park… it was always an adventure. 

Usually though, a small part of the day was spent in a therapy session. Whether it was at-home speech, an occupational/physical therapy gym, ABA - you name it, the king has had it. 

 Back then it just looked like a visitor coming over to play. It wasn’t until I was a bit older that I began to understand the full situation. Between school, therapy, family events, therapeutic recreation, and other things that life throws at you, the king my aunt, and my uncle had a full schedule. 

It definitely wasn’t easy for them. It’s sometimes tough to watch as a family member on the outside. You help out as best as you can when you are around, but at the end of the day when you take a step back out of the bubble, you realize just how easy your daily routine is in comparison. 

This may sound negative, but it's not meant to be. I say this because I feel it is crucial in understanding and being empathetic to the lives of those with special needs and their loved ones. No one likes to shed light on the negative side of disabilities, but lets face it – IT SUCKS. 

Any disability! 

I was diagnosed with juvenile diabetes when I was six years old. I love my life, but if someone gave me a “pancreas jump-start pill” I wouldn’t reject it, that’s for sure. 


No one wants to struggle or to see people they care about struggle. Some days it is harder to cope with then others. So please remember this before you roll your eyes at the kid having a meltdown at the restaurant (or something like that )  

Fast forward to college, I was studying biology (HA!) and was looking for a job in the medical field when my aunt and uncle came to me with an opportunity for a job at a special needs recreation program for kids & adults with developmental disabilities in the area. The king was (and still is) part of this AMAZING rec program and my aunt loves it there. 

I’m sure there are many posts in this blog that include this place. I ended up working there all throughout college and WOW… It changed my life! 

I worked with hundreds of individuals, young and old. Swimming instruction, gymnastics, movie night, book clubs, summer camp, I even got to work some programs with my cousin, which was really cool. 

I was able to experience the good, the bad, and the ugly of physical, emotional, and developmental disabilities. 

However, if we’re being honest, I was basically getting paid to hang out! Because really that’s what it was. Yes, technically I was a “program aide,” but these men, women, and children provided so much more for me then I could have provided for them. 

It was the best thing that could have happened to me. After I began working there, I switched my major to communication sciences and started on the path to becoming a speech pathologist.  I got my bachelor's degree and moved on to get my masters.

While in graduate school, I became quite confident in my abilities when it came to speech therapy and I quickly learned that communication is one of the most important things we do as humans. 

I love talking to people, listening to their stories, sharing my own related stories, learning from their language/dialect, hearing the uniqueness of their accents.  Generally speaking, I love communication. 

We don’t really think about it, but imagine all the ways you need to communicate throughout the day. You text, you talk, you use gestures...it becomes second nature.

Imagine those who don’t have the dexterity to text.

Imagine those who know exactly what they want to say but they don’t have the ability to form sounds that make words and sentences.

Imagine those who need to use the bathroom, but are unable to speak, sign, or gesture this. 

I had a friend in grad school that was working on regaining speech with a 30-year-old man. This man was a son, a brother, an uncle. He had just graduated from college. One day he was walking, fell, and hit his head. He had such brain damage that he couldn’t move most of his body without tremors, let alone talk. 

As a medical professional, we are told “don’t bring your work home,” but being that my cousin is non-verbal, stories like this really hit home. Communicating your basic wants and needs is something we all take too much for granted. 

As a pediatric speech pathologist, this is the first thing I assess: can this child indicate that they want something, that they need something, that they like something, that they don’t like something. Usually, this ability is impaired in some way and I make it my priority to give them this ability before any other skill is learned.

Ok, so getting back to my cousin.  The king.  After reading all this you could say that the king’s life has changed mine in ways that I could have never expected. 

I truly believe that he exposed me to the world of holistic therapy and its benefits, but it is so much more then that. 

Because of him, I am able to see through so many different lenses. The individual with special needs, parents, the family, and friends – each group has a unique outlook, a unique need. 

He has shown me that:
-- everyone deserves happiness, in whatever way suits them. 
-- everyone deserves to be treated with respect. 
-- everyone deserves to have a voice. 

He has taught me to not feel sorry for individuals who live a “non-typical” life, but to embrace the quirks in it. 

Even more importantly, he has taught me empathy – for his own struggles, for the struggles of other individuals with special needs, and for the efforts of their parents, brothers, sisters, cousins, aunts, uncles, grandparents, etc. to insure that these basic privileges are not denied of them. 

He has taught me to walk a mile in someone’s shoes before judging their outlook. Through experiencing his life, I am more compassionate, more open minded, and more aware. 

These are all qualities that I hope to spread to others =)

With that being said, this was such a pleasure to write and I’m looking forward to being able to writing more! 

In the future I hope to write blog posts about my experiences, both as a family member and as a service provider. 

I’d like to tell some stories, answer questions, and give advice/tips to those who can find it useful. 

As a therapist, I definitely have information to provide, but I have also had all the same feelings as any family member who loves someone with special needs. I know the joy in the good news, the sadness in the bad new, and the fear of the unknown. This empathy gives me a unique perspective that I would love to share with all of you!

- Cesca
---------------------------------------------------------------------------------

Thanks Francesca!  Ok, this is Autism Daddy again.  She's great, isn't she!  I gotta say that I made wifey read Cesca's post last night and she was crying 4 sentences in.  I knew why, but I asked her why anyway.  And wifey said:


"My heart swells with pride... everything that I hoped to achieve by exposing Cesca to his various therapies came true!  I just wanted my niece to grow up to understand our son.  So the fact that she has chosen to do this for a living surpasses my wildest dreams."


She almost had me crying too.



Anyway, I'm gonna end it there.  But I hope Francesca will write a bunch of guest blog posts for me in 2017.  And if you have topic ideas for her, or specific questions you'd like her to answer please let us know in the comments.



Otherwise just like, comment, and share to welcome Francesca to the Autism Daddy family!


Thanks and Happy New Year!




-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!

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