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!!



10 comments:

  1. Isn't it something how we can be just minding our business and that funk bus just hits up out of no where. Still have those days too and I guess I have to accept that I always will.

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  2. I have many funk moments also. I have a 7 yr old non typical son and an 11 yr old typical daughter. So I guess in a way I'm lucky. Unfortunately my 11 yr old gets it in the neck all the time because I freak out over what my son isn't getting/enjoying etc. This has shown me that I need to step back, stop comparing and realise that my son is happy.

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  3. I had a meltdown myself a few years back when I realized our daughter would most likely never have kids. I would never be able to experience being a grandma. Just like you, that is my issue, not hers, but it got me seriously depressed. But you know what? She's exuberant and doesn't care a bit what others think of her flashy and non color coordinated fashion sense, lol...and that is admirable in its own right. I feel for ya, AD. Thanks for driving it home once again.

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  4. I'm just happy to be here and able to care for my son....that makes any funk go away...My son loves the christmas classics...and so did I....I still do!So we have that along with Clifford ....Sesame...etc.....Lol

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  5. I felt the same way about my son for a couple years, but i had two daughters back to back in 2015 and this year, and now I can enjoy both worlds, neurotypical, and my autistic 7 yr old. Why not consider adding another child to your family? so you can alos enjoy both worlds as i do? :D just an idea

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  6. Thank you for writing this:
    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...
    YES! So often we get advice about celebrating every little tiny thing and sometimes I just don't have the energy for that. Sometimes it just sucks that every little thing takes extraordinary effort!

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  7. I got funk punched in the face the other day. My brother and I snowboarded together all our lives and talked about teaching our kids to snowboard. My son is 8 now, autism, non verbal, epilepsy, and I've never got him on the slopes. Well last week my brother started teaching my 18 month old niece to snowboard. BAM! Super funk. I don't even want to describe my funk because it's embarrassing. I love my brother and neice, but they are beginning something I always thought I would have with my son. It actually hurt. Up to now, I have met autism with postitvity and a "I can do this attitude", but man I felt like something pulled my spirit out of my body, ran it through a shredder, and stuffed back in. Autism racks up another win. I look forward to your "it gets easier post". I too think it gets easier, but those funk punches are starting to wear me down. Not sure how many more rounds I've got left in me.

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  8. My daughter is extremely extremely high functioning- she wants to get a PhD in genetics. She's 21 and a senior in college. But she's very typically autistic in her social skills and her lack of understanding of the world around her, never won academic awards, never has close friends, not interested in relationships or having children. I am her interpreter for the world, facial expressions, social niceties, interactions with strangers in every arena. have constantly adjusted my life expectations as we have gone along - I have struggled with not imposing my experiences, like typical high school or college life on her. This really resonated with me!

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  9. I always think of myself, and my son, as having a foot in both worlds- he floats between the NT and Aspergers world. He has NT friends but will also go off an do his own thing. Sometimes I think I see it more than others do, but it took YEARS for the word Aspergers to come into play for us. But there were signs that knowing what I know now were there when he was younger. But you can't look back, right? We finally have found our stride- the right resource room "classroom replacement" pull-out situation for him, the right teachers, the right inroom support, etc. Things are "clicking" - which I never thought they would. So in that regard, I agree with your 'things will get easier' post above. But I also had to adapt- we tried little leage and soccer, but it was painful to all of us. There are kids out there who are playing like Beckham at 2 years old and thats not my son (or my NT son for that matter) So, yes, you need to pick your child's strengths. For us its been Cub Scouts (LOVE Cub scouts, great group of kids and parents IMO), piano, and YOGA!! Yoga- I couldn't believe it, I'm the most conservative, buttoned up person around and it took a while for me to realize- this is my kid, he likes this. So we've come to love it. I've already started researching the special ed program at our local county college, etc. and I'd like to get him involved in groups and clubs that interest him- like cars, maps, travel and yoga! I think we all, no matter what level our kids are at realize that in the end they will be OK.

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