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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