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!!

Tuesday, November 22, 2016

Autism Parents: Things Are Gonna Get Easier











I wrote a post yesterday called "I Still Yearn For a Typical Life Sometimes".  In it I talked about even though I’ve been living on Autism Avenue for over 11 years now with my 13 year old son, I still can get in a funk and get depressed "big league" :-) but in that post I wrote …

But I swear I've been better these past few years... I rarely get in funks like this much any more. 
In fact at the beginning of this month I was going to write a post about how people always told me that things would get easier as my son got older, and I never believed them, but things do get easier... and living this special needs life does get easier the more years into it you are... 
So this is that post.

When I do my Autism Daddy speaking engagements around the country, inevitably during the Q&A session an autism mom will ask “my son is bouncing off the walls from the minute he gets up in the morning to the minute he goes to bed at night.  I don’t even have time for a shower most days…  How do you and wifey do it?  Does it get easier?”

And I usually ask “how old is your kid?”  Nine times out of 10 the answer will be between the ages of 5 – 10 years old.

And I’ll say “Yep those were the rough days in our house too.  Thing were a lot crazier when he was that age.  And people would tell me that it gets easier as our asd kids get older, and I didn’t believe them, but I’m here today to tell you that it is true.”

So I’m here today to explain that in further detail.  And when I talk about things being easier, I am selfishly looking at this from the parenting perspective, not the kid perspective.  So as you read this, please remember this is about being honest that being a parent of a kid with autism or any special needs can be difficult… but things do get easier…

 I started this blog when the king was 7 years old, and boy he was a handful!  And the blog post that best expresses what it was like living in our house back then is "50 Things Overheard at My Autism Household on a Typical Weekend"  

If you want to get a sense of what it’s like with a kid who is bouncing off the walls from the minute he wakes up to the minute he goes to sleep, I beg you to read that post.  Back then it was truly “all hands on deck” parenting.  If I got stuck in traffic on my way home from work I’d get a text from wifey saying “how far away are you?  I’m going batty over here pulling him off of the furniture!”

And if that wasn’t bad enough right after he turned 8, we entered what I call on the blog, “the summer of rage”.  The summer of 2011, the king was filled with rage.  Self-injurious behavior, hitting others… He was miserable for big stretches of every day and just seemed uncomfortable in his own skin.  If you go back and read the blog and FB page from around that time, it was all pretty dark.  I remember somebody commented “don’t you post any positive stuff?”

But that was just what our lives were like back then.  And people with older ASD kids would comment, “I know it’s hard, but it does get easier as they get older…”

That summer of rage, the summer of 2011, when my son was 8 was probably the worst stretch we ever had as special needs parents.












Well fast forward 5+ years to now, and I can honestly say that things did get easier.   We’ve got a pretty mellow 13 year old on our hands.

And these days, even when he’s not mellow and has some rage episodes, or zany behaviors, it’s not nearly as bad as it was years back.

What happened?  How exactly did things get easier for him and for us as parents?  I’m not entirely sure.

 It wasn’t like we flipped a switch after that summer of rage and things were significantly better.  Things got easier gradually.  In fact, if I didn’t have this blog to look back and remember how insane my household used to be I’m not sure I’d notice how much easier things have gotten around here.

And let me say straight away, things didn’t get easier around here because my son made significant progress in his cognitive development.  I know a few kids who were in my kid’s class when he was 6-7 years old, who have gone on to be somewhat mainstreamed or in integrated classrooms.  So I’m sure their parents would say that their lives got easier because their kid made significant progress.  So if you have a kid in that age range now, that hope is absolutely still out there for you… but that’s not what happened with our kid.

My son still has severe autism, is still nonverbal, and is still in the “low functioning” / some would say “most restrictive” school environment in an 8:1:1 classroom.  He also now has epilepsy in addition to his autism.  (he had his first seizure at age 9).

So again, what happened?  Why did things get easier?  Well there's 5 things that I think made the difference with our guy, and for our parenting sanity.  Not saying this will work for everyone, or will apply to every kid, but this is why I think our lives are easier now…













1) in the beginning of those crazy days the king wasn’t sleeping well and would be up and down all hours of the night.  Wifey and I would watch him in shifts and I would go to work some mornings on 3-4 hours of sleep.  Sleep is important for your kid, it’s important for your sanity, it’s important for your marriage.  So somewhere in there we discovered the magic of melatonin, and it has helped his sleep immensely…. And you could say that it restored our sanity…

2) During the summer of rage we bit the bullet and put the king on medications.  As I said he truly seemed uncomfortable in his own skin.  It was pathetic to watch.  So with the help of a pediatric psychopharmacologist we got him on low doses of two scary old school meds and they helped him immensely.  They got him out of the summer of rage, and back on the right track

3) Time, maturity, slowing down, and being more comfortable in his own skin.  I said earlier that the king maybe didn’t make much cognitive progress in the past few years… but the progress he did make has made parenting him a lot easier.  He has just slowed down quite a bit.  He has become quite a lazy teenager.  Back during those rough times when he was younger I would have given my left arm to have him sit on the couch and watch a 30 minute tv show… but he was too hyper and would bounce off the walls and would walk from room to room while the tv was on.  Now, we can’t get his lazy ass off the couch!  He can watch a full 2 hour movie, often times while also playing other videos on his iPad :-)  That’s the kind of progress we have in our house, but it does make parenting him a lot easier…

4) This 4th one is maybe the most important one.  I think wifey and I have learned to roll with the punches better.  To try and live each day as it comes.   And in a strange way, when the epilepsy and seizures entered the picture I think it made us not worry about the autism as much anymore.  Once we also had epilepsy to fight, I think we gave up on expecting miraculous progress and maybe we slightly lowered our expectations on what our kid is capable of.  All of that made the day to day stuff easier to deal with.  I think wifey and I have also gotten better about being more selfish and taking care of ourselves, and making ourselves happy.  I might write a separate blog post about this soon, but wifey is currently living out her dream of being a singer of a rock and roll cover band.  And I’m enjoying my weird Autism Daddy celebrity status and am loving doing public speaking.  All this to say that we are trying harder to make ourselves happier.  And I think us both being happy and fulfilled makes us better parents… and I think that our son can feel that.

5) I don’t know if wifey would agree with this one, but I think parenting our kid has gotten easier because for me because I am not comparing our situation to others as much.  We are not around typical kids the king’s age as much, so we are not coming face to face with what “normal” parenting is like that often.  We are just living in our little special needs bubble, and taking each day as it comes.  Every once in a while I will come butt up against how different our lives are, and how much we are missing out on.  And that still hurts a lot.  See yesterday’s blog post for proof… but years ago when I would get in a funk it could last weeks, now it only lasts days… That’s progress for me!  :-)

Anyway, that’s all I got.  I’ve been meaning to write this post for weeks, because things are pretty easy and mellow in our house these days, and it can be quite boring in our house lately.  In fact, sometimes 3 days will go by and I’lll realize that I haven’t posted anything on my Autism Daddy FB page and I’ll think to myself “that’s because I’ve got nothing to update them on, no bad news, no good news, nothing new at all.  It’s Thursday… He’s gone to school, come home, ate peanut butter for dinner, watched tv, went to sleep, got up and did the same for 3 days straight…”

And I guess you can say that being bored is progress for all of us… Years back during that all hands on deck summer of rage, it sure wasn’t boring! I would have loved to be bored back then!

Anyway, let me end this by reminding all the autism parents that

Ooh-oo child
Things are gonna get easier
Ooh-oo child
Things'll get brighter
Ooh-oo child
Things are gonna get easier
Ooh-oo child
Things'll get brighter
Some day, yeah
We'll get it together and we'll get it all done

(AUTISM DADDY DROPS THE MIKE)











-- 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!!



Monday, November 21, 2016

I Still Yearn for a More Typical Life Sometimes











I feel like I've gotten pretty good at this special needs parenting thing.  I don't focus on what is missing from our lives as much anymore.

Years back, in my mind I would constantly be comparing our lives with the lives of parents with typical kids around the king's age and I would get in a funk.

Or I would see neurotypical kids my son's age interacting somewhere, maybe in a park, and I'd get in a funk.

However, I've gotten much better about this over the years.  Maybe that is because I just roll with the punches better or maybe there's just less typical kids the king's age that we hang out with so the differences of our lives is not in our face as much anymore.

Every once in a while though I come face to face with just how much our lives are different, and I get hit over the head with the funk stick, and get myself in a funk.  This has happened three times over the past three weeks.

Before I get into the three events that got me in a funk, let me remind you that my wife and I have one child, a 13 year old son with severe, non-verbal autism and refractory epilepsy.

Also let me say straight away, that I know that these are my issues, not my son's issues.  He is happy.  These are just issues that I have with wishing that I had a more typical son and was leading a more typical fatherhood.  I'm not proud of having these feelings, but they are real, and I hurt sometimes, and I feel like writing about them in the hopes that it will make other parents feel less alone if they feel the same way.

Ok, here goes...

1) I had an Autism Daddy speaking gig in Plattsburgh, NY in early November.  Nothing unusual about that.  It was an event sponsored by the Autism Alliance of Northeastern New York and I was surrounded by autism parents and people who work with the ASD community.  So what got me in a funk?  Well Plattsburgh is where I went to college.  So I was in town for about 24 hours and when I wasn't at the conference I was visiting my old college SUNY Plattsburgh.  I was just aimlessly walking thru the student center, and peeking at the old dorm where I used to live.  I was a Mass Communications major and was heavily involved in the college TV station.  So while I was there I met up with an old professor and even spoke to the TV station students for a few minutes about my
work at Sesame Street.

 

It was a great day for me in Plattsburgh.  And on my ride home it hit me... HARD.

I'm never going to send my kid off to college.

Now I've known that for years and I've accepted that fact years ago...but being around all those 20 year olds (only 7 years older than my guy) and being around my old college town where I had so many great memories made the fact that my kid won't experience college life hit me like a ton of bricks.

But again, this is more about me...  My son seems happy.  He doesn't seem to know what he's missing out on by not going away to college.  So it's more that the wife and I are missing out on sending our kid off to college...

My wife and I both went away to college (to different schools) and both had the times of our lives while away at school.  And I think we both always envisioned our kid(s) going away to school and sharing all the stories about our experiences, and me maybe trying to influence their decision to choose dad's school.  But we will never experience that.  Plain and simple.  And it really kinda sucks...











2)  This past weekend, we dragged my son to a High School play.  Wifey's sister's nephew is a sophomore in HS and was in his school's production of Hairspray.  I wrote on my Autism Daddy Facebook page about how hard taking my son to school plays was in the past....



And I celebrated the fact that my son sat in his seat for almost the first 30 minutes...



So what got me in a funk?  It was the first High School play that I went to while my son is almost HS age.  He would be in 9th grade next year.

And guess where wifey and I first met?  In the Drama Club in our high school.  We were both heavily involved in the school plays.  And our experiences in the plays, choirs, talent shows back in the late 80's in HS shaped who we are today.  We still sing songs and recite lines from our productions from almost 30 years ago.  Many of our good friends today are people we performed with back in HS.

And my son will never experience that...and I accepted that fact years ago...but watching those kids only 2-3 older than my son singing and acting their asses off on Saturday hit me like a freight train.

Once again, this is my issue...not my son's... he is happy...

However, if we had typical kid(s) I always envisioned them being the artsy type...being musical, and artistic, and having a great sense of showmanship...  and I guess you could say that my son has a little bit of each of that... but it's safe to say that he'll never be in a HS play... Plain and simple... And it really kinda sucks...











3) This last one is kinda silly and small compared to the other two.  On Sunday morning, I woke up still in a funk from the HS musical the night before.  So I got up early... and volunteered to go to the supermarket to pick up some groceries.   First I got my bagel and coffee, then I was jamming my tunes while walking around the store.  I was slowly getting out of my funk when I saw this...




Mad Magazine at the check-out counter.  I haven't seen one of these in YEARS...  And when I was exactly the king's age I LOVED Mad Magazine!!  And if I had a typical kid and knew it still existed I'd probably be the dorky / embarrassing dad that would be trying to get his kid into Mad Magazine and all the dorky tv shows and movies that I loved when I was his age (Mel Brooks anyone?)...

Again, this is my issue, not my son's...  It's something that I need to come to grips with.  And of course, this Mad Magazine one didn't hit me as hard as the other two.  But plain and simple, it really kinda sucks that I can't share the passions I had when I was his age with my son.   I know what some of you are gonna say about this one... "buy him the Mad Magazine, read it to him, maybe he'll get something out of it, maybe you two will have a moment"  and all of that is true, but plain and simple wouldn't it be nice if I didn't have to wish for a single moment of acknowledgement, wouldn't it be nice if I could just share my bizarre sense of humor with my son without having to work at it...

----

That's all I got.  Those are three things that got me in a funk over the past few weeks.  But I swear I've been better these past few years... I rarely get in funks like this much any more.

In fact at the beginning of this month I was going to write a post about how people always told me that things would get easier as my son got older, and I never believed them, but things do get easier... and living this special needs life does get easier the more years into it you are...

...But the times of grief still come from time to time... there's no doubt about that... And there's still times when I wonder what parenting a typical child would be like...

...and I think these feelings are completely natural, and will never go away...

But things do get easier, I swear...  I am still gonna write that post soon... Look for it in the next week or so, because things do get easier when you reach a place of acceptance...

Weird ending, but that's all I got...

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!!



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