Categories: Uncategorized

My Son w/ Severe Autism Is Happy. Isn't That The Most Important Thing?

(originally written & published on July 5, 2012)

You all know I’m not a big fan of autism. That’s been well established.

I already wrote about how I don’t think it’s a gift from god. (you can read that HERE)

I wrote about how, in my opinion, the autism parents who say they wouldn’t change their kid if they could / take away his autism are a bit delusional. (you can read that HERE and HERE)

And I go thru stretches where I have MAJOR “grass is greener on the other side” syndrome. I wrote about that HERE.

And part of me is going thru a stretch like that right now. Part of it I think is I’m reading the book by Carly Fleischmann’s dad.  (If you don’t know who Carly is you can learn more about her HERE)

And I’m reading it getting envious of (a) the resources and money that they had at their disposal and (b) that ABA worked for them and that even before her “typing” breakthrough she was making small steady progress and (c) of course I’m envious of how she can type and communicate her wants, needs, and desires.

As many of you know my 9 year old son Kyle has not made much forward progress (academically & developmentally) in years. I say on here quite often that he has the receptive and expressive language of an 18 month old and he’s been stuck their for years.

So I read about Carly and I read about some of your kids and some of the progress that they are making and yes I sometimes get jealous and envious.

And today I was driving to work and I drove past a school where they were unloading teenagers in wheelchairs off a van and into the school. And part of me felt
sorry for these kids but then part of me went to my “grass is always greener” place and I thought “yeah but I bet they can talk” and “maybe they’ll hold down a job and live independently”.

And then I stopped myself and thought “But I wonder if they are happy?” and then I thought “I wonder if they had to get alot of surgeries or what sorts of medical issues they have”

And for maybe the first time EVER I thought maybe Kyle’s got it better than some of them. And I even thought maybe some of their parents have alot more stress & challenges than we do. Heck, maybe some of those kids has life threatening illnesses.

My son Kyle is almost always EXTREMELY happy. He is happily content to just wander around the house munching on popcorn and watching Sesame & Dora all day long.

Outside of the summer of 2011 (“the summer of rage”) he’s always been pretty happy and pretty malleable and pretty go with the flow. Mr Mellow Yellow.

And the more I read about Carly the more I think that her & Kyle are completely different. Carly was/is prone to lots of violent meltdowns. Carly was extremely intelligent and was trapped inside her body and found that frustrating. Carly knew she was different and hated it.

Kyle? I think what you see is what you get. For better or for worse (and this is hard for a dad to say) I don’t think there’s an extremely intelligent kid in there. And I don’t think Kyle knows or cares that he’s different. He’s just Kyle.  He shows very little indication that there’s a brilliant mind in there.  We’re still working on “point to nose” at 9 years old. 

I’ve said a few times that sometimes I feel like our lives are like the movie “Groundhog Day” and we’ve been kinda reliving the same day (and raising a toddler) over and over for years.

But ya know what? Maybe that’s exactly what Kyle wants. And maybe that’s exactly what he is capable of.

And for the most part he’s been happy for most of his life. He’s had plenty of issues, don’t get me wrong. Painful stomach/ constipation issues, “the summer of rage”, a dermoid cyst removed from his eye, lots of cavaties cuz we cant brush his teeth, and now seizures to name a few…but for the most part he’s been happy & healthy for his 9+ years on this earth.

Now compare that to Carly or some of the even higher functioning kids I read about who know they are different and maybe Kyle doesn’t have it so bad.  As long as he stays his happy go lucky self for the rest of his life, who’s better than him?

And what about those kids in the wheelchairs I saw?  I’m sure some of them are happy and will lead happy productive lives and I’m sure some of them are miserable and have medical issues that would scare the bejesus out of any of us. So maybe Kyle, through his obliviousness to his situation, has it better than some of those wheelchair kids I saw.

So I think alot of it boils down to me as a parent.  He’s happy most of the time, but am I?  Am I happy with this situation?  Would I be happier with a typical kid?

I want him to progress.  I want him to be better.  I want him to be more typical.  I readily admit all of that.  But most of all I want him to be happy. 

Now I’m not naive enough to think that this good stretch we are in with Kyle will last forever.  At some point something’s gonna happen or the other shoe will drop and another crisis will fall into our laps. 

But thinking back it almost seems that most Kyle crisises are more of a crisis for me & the wife than they are for Kyle. 

Our school district f–ked up in September and didn’t have a placement for him.  And mom & dad were in crisis mode, but Kyle was fine with it.

He had to go under general anesthesia at a hospital for dental work last year and we me & the wife stressed for a week, but Mr Mello Yellow was oblivious to the whole thing in the days leading up to it and did pretty ok at the hospital day of.

Even his seizures last month were more stressful to me & the wife than they were to Kyle. I mean he hates the EEG test, getting all the leads taped to his head was absolute torture for him. But 3 days in the hospital was pretty fun for the king.

I guess if I could go into a time machine and see Kyle as an old man after we’re gone and see that he’s well taken care of, and that he’s happy I could rest a little easier at night.

When all is said and done maybe he’s the lucky one. Maybe we should all live an oblivious life. Sounds good to me. Sign me up! 😉

As usual. I’m rambling. This is all over the place. I’m gonna end it here…And the title of this is really stupid. If you can think of a better title please suggest it.

Thanks.

Over and out…

THE END

———————————-

(adsbygoogle = window.adsbygoogle || []).push({});

—————-
 

amzn_assoc_ad_type = “search_box”; amzn_assoc_tracking_id = “a050ef-20”; amzn_assoc_marketplace = “amazon”; amzn_assoc_region = “US”; amzn_assoc_width = “120”; amzn_assoc_height = “90”;

If you’re gonna shop Amazon anyway, can I ask that you enter Amazon by using the link above?  This way I can make a little money.  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!!

100714

Frank Campagna

I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).

View Comments

  • Today he's happy and yesterday he was happy most likely tomorrow he'll be happy. Happy is no small thing and is something to celebrate (hey we get the cheers for the smallest of things it helps sometimes)

    Jennifer

  • AD, I totally get what you are saying. I often feel so guilty because I want more for my two. I often feel jealous of how easy a lot seems for you and your family compared to ours. I have a 2 and 3 year old both very high functioning ASD. They seem typical to outsiders, but if things are not "just so" then we have major meltdown. I get all the lectures from what I hope are well meaning strangers about how to better parent my two. All I want at the time is for someone to hold the door open for me and maybe push my cart to the car. I know both of mine will know they are different and I don't know how they will feel about it or deal with it. Thankfully right now I can also say mine are happy most of the time. Enjoy it. Relax in the good times. We all know the bad times are stressful enough for all.

    • I know how you feel. I don't underestimate how hard it is for parents of lower functioning ASD'ers but sometimes I think it would be easier if my son was a bit lower functioning - that way the school parents wouldn't despise him for hitting out at their children, people wouldn't look at me and wonder why i'm not disciplining my child when he is running around like a madman at the shops. Cos "he just seems too normal to be autistic". It makes it hard sometimes. And at his age he's just started realising he is different to his peers, and has different rules at school to his peers, etc, and i'm finding this a bit difficult to deal with!

  • The title is perfect. It got me to read the article. Great article as usual. Thanks for sharing! And yes, I think that is the most important thing!

  • I am sorry but I am one of those parents that is okay with my son having autism. I love my son, but he does have his meltdowns, but school seems to be helping him get to his milestones. But we also have him on medicine to help him calm down and be able to focus too. The medicine we have him on also help him have peace within himself too. So my son is almost four 40 lbs and 3 foot 2 inches and he is on 1 1/2 tablets of Risperidone each tablet is 0.25 mg. which he takes in the morning and then one tablet of guanfacine which is 1 mg at bedtime. But with those two if we could get him fully talking you would never know he had autism. But that is okay because with our school they planned a classroom around my son to help him which if he knows you he says a lot of words.

    • I'm sorry I don't understand why you would prefer your son to have a more difficult and challenging life. I can understand you may not want to change your son's personality, I would want my son to keep his personality but I would want to remove all that stress that Autism causes him. I wish that he didn't have autism so his personality could shine even brighter and that he could do the things he loves that autism currently prevents him to do. I want him to reach his true potential that autism prevents.

  • I love the title...Sometimes-maybe all the time we have to let happy be enough. I have been having a few rough days and feel very alone and isolated. I have 3 kids with fragile x and yesterday was just not an easy day and I found myself saying "i just want normal" but this is my normal...Most of the time things are great but there are those times where its just not easy..

  • I <3 you. I love your honesty. I hope you continue blogging, it helps me come to terms with my son and how "the grass is always greener on the other side."

  • I love my grandson the way he is and he loves me the way I am. I Have 11 grand kids and Elijah is the only one with autism. He holds just as big of part in my heart as the others ( Maybe a little more ). It's like he knows what I'm thinking. If I need cheered up he always puts a smile on face and gives me hugs and kisses. He is 6 years old and has severe autism

  • Wow. Sounds like my son, Willie. Just turned 10. He's been stuck at about the same level developmentally since he was 2, but damn if he's not the happiest person I know. Even when he's smashing our stuff, well.. especially when he's smashing our stuff.

  • Just remember, ALL of us parents feel that way, that the grass is greener. Even with NT kids, the grass will always be greener. There will always be kids better than our kids in one way or another. But the flip side is always true too.

  • I also love your blogs and it makes me feel like I am not alone in all this..I have a 4 yr old non verbal autistic son who also was diagnosed with epilepsy when he was 2.. It's def been hard but I have learned to accept the cards I have been delt and I live my son with all my heart I just try my best to help him:)

Share
Published by
Frank Campagna

Recent Posts

The Finish Line: My Most Difficult Day as An Autism Dad — A Guest Post by Allan Schneider

Prologue by Autism Daddy: Howdy folks!  Long time no blog!  I hope y'all are well! …

5 years ago

More Autism Julia Content from Sesame Street!

Howdy folks!  As many of you know I work at Sesame Street, and was proud…

7 years ago

“I Want You To Find Someone” — Guest Post

  Intro: Jim lives in Pittsburgh where he works as a Project Manager by day…

8 years ago

Why Autism Awareness is No Longer Enough

GUEST POST   Almost 10 years ago, my then 2 -year old son, Devin, was…

8 years ago

Thinking About Career Day At My Son’s School

GUEST POST -Ellie Whetzel is a Wife, Mom, and blogger who writes about the ups,…

8 years ago

Sesame Place Is The First Autism Certified Theme Park!

I've taken my son to Sesame Place many times!  He's 14 years old, but he'll…

8 years ago