Monday, May 30, 2011

Autism Daddy Can Be Hard To Please.... My 4 Hangups....











(originally written & published on May 30, 2011)



Sometimes theres just no pleasing an autism mom or dad.  I realized today that I am hard to please.  And I've got a few hangups...  4 of which I will share with you today...
 
1) When out with friends with no kids or typical kids i find that people ask me about autism / Kyle too much or not at all.  I don't know in my head what the perfect balance is, but there's some days when I just want to have a beer and not talk about it at all...and there's some days where I'm thinking how could we be chatting for 60 minutes and they never asked how Kyle was doing.  So there's really no pleasing me.    My wife has similar issues. When she goes out with the "autism mommies" they RARELY talk about autism, they're just happy to be out having adult conversation.  :-) But when she goes out w/ friends who have typical kids, people either ask really detailed questions about Kyle and autism will rule the conversation which is not what she wanted with her night out... OR...they won't ask at all and be talking about accomplishments that they're kids are making and autism will be the elephant in the room.
 
2) Another interesting issue that I have is when some work colleagues ask how my son is doing. I often wish I had some good news to tell them or some great progress to update them on cuz I don't think they really want the nitty gritty of how he's REALLY doing...  so I just say "he's doing fine, thanks for asking..". Again this is my hangup. They are just being nice and checking in...










 
3) Another thing that gets under my skin is when we are at a gathering with extended family or adult friends who don't see Kyle very often... we must hear "Wow, he's gotten so big" a dozen times from a dozen different people.  The reason it gets under my skin?  Cuz there's not much more they can say. On the surface Kyle is acting/ behaving the same way that he was the last time they saw him & the time before that & the time before that...  So all they see and can say is... "wow he's gotten so big...". Again, my problem/ hangup.
 
4)  When family/ friends (mostly older folks :-) see articles in the newspaper on autism and say "did you see that? I'm gonna clip it out and send it to you..." Trust me mom & dad there's nothing you're gonna read / see on tv about some treatment that we don't know about already and perhaps even tried already. And the inspirational story about the boy with auism making 6 baskets in the basketball game isn't gonna make us feel better... Again, they mean well... So this is my hangup.


That's all. 4 things that popped in my head today and wanted to share them...    :-)




-- 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!!






ALL ABOUT AUTISM DADDY'S WIFE, AUTISM MOMMY!









(originally written & published on may 30, 2011) 

I started this page because the wife didn't like me bitching about autism on Facebook. So, of course, people had alot of questions about my wife... why she didn't want me talking about autism on FB, how involved is she in Kyle's schedule, etc.

Let this be the note to dispel all the rumors. :-)

My wife is an Autism Mommy Rock Star! She is a stay at home mom because she's accepted the fact that Kyle's crazy schedule could never be handled PROPERLY if she were to work.

Because of this, unfortunately she lives & breathes autism 24/ 7 (where I get a 40 hour break each week at a glorious place called work).

She drives Kyle to and from school everyday. We could get busing but this is our (her) decision and the thinking is that we can't put a non-verbal kid on the bus. You hear too many stories about non-verbal kids accidentally being left on the bus all day or worse...

She manages his schedule and arranges all his after school activities... at home ABA on Mon & Wed, Aquatics OT on Tues & Thur, and Music Therapy on Friday.

The special needs music therapy session takes place at Kyle's school, after school and my wife single handedly made it happen. Found the program, informed the school, got some "scholarships" for some financially strapped parents, found the aides to stay after school for 30 minutes, etc, etc, etc.

So as I said, she lives and breathes autism 24/7. I feel that as a dad I help out & participate more than the average autism dad. There are SOME autism families that we hang with, go to bd parties, etc and I rarely see the dads. There's 2 families that we've known and seen at events for years and I've yet to meet the dad.


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So maybe I'm more involved than your average autism dad. During arguments I tell the wife that I'm better than most dads and tons better than most autism dads! I say that we are a true 50/50 team. It's probably more like 60 her / 40 me, but what she always tells me during theae argumenys is that based on hours of the day we might be a 50/50 team, but mentally the brunt of the responsibilities is on her. She is the one who has to be on standby from 840am-3pm. She is the one who will get the call from the school when Kyle has a meltdown or injures himself or almost faints from holding his breath. She is the one who handles all those emergency doctor appointments. She is the one who spends afternoons arguing with the school district.

So she is an AUTISM MOMMY! I'm just a dad who thankfully has an extremely flexible job. I work 10am-6pm most days. So I help them get ready for school in the morning and when I come home from work I kinda take over. Weekends we truly share the responsibility. And we give each other breaks. Small breaks like..."you go take a nap, I'll handle this" or "I'll take Kyle to gym & swim on Sun morn, you sleep in"...and BIG Breaks such as... I'm a marathon runner and 1-2x a year I'll sneak away for a weekend to run a race in another city.....The wife has gone on a few overnights with girlfriends and this year is contemplating going to Chicago for 4 days in August with a girlfriend to see Lollapalooza (she is currently obsessed with Dave Grohl from the Foo Fighters :-)

Then as I stated in another note (see my other FB Note entitled "A Note about Autism Daddy & the wife & how selfish we are & how we like to go out & party") we hire sitters often so that we can go out together...

Anyway LONG story short, we kinda manage Kyle 50/50 time wise (ok 60/40 :-) but she is right, mentally a signifiant higher percentage of the weight of the autism is on her.

So she sees Facebook as an escape. She'd gotten back in touch with friends from grade school & high school, even some ex-boyfriends! (i truly am fine with it :-) She's even had mini reunions with friends she hadn't seen in 20+ years. So as much as possible she wants to keep FB as a light and happy place. So that's why she would get annoyed when I would write a status update complaining or ranting about something autism related

So I created AUTISM DADDYand now I get to complain and rant to all 450 of you!

I just had to write this note because I didn't want people to think my wife wasn't involved with Kyle or was mean for not letting her hubby use FB as an autism learning tool.

So, i said it before and I'll say it again... MY WIFE IS AN AUTISM MOMMY ROCK STAR!!

That's all folks! :-)
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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!!





Friday, May 6, 2011

Autism Daddy & wifey are selfish & we like to go out & party :-)




(originally written & published on May 6, 2011)






My wife and I know each other since 1986 in High School. We were friends in HS and would see each other when we came home from college and we started dating after college  in 1993 when she asked me out.
 
And I can honestly say that we are exactly the same today as we were in the beginning. What I mean by that is that we still like the same exact things that we liked back then.
 
We love tv, we love movies, we love live music, we love going out and staying out late... And we try to do all of these things as often as humanly possible.
 
I find that most of my old friends with typical kids have grown up more and their tastes have changed, but the wife and I stay the same.  And we go out alot more than our friends with typical kids.  Yes thats because we have amazing family who we can ask or pay (niece) to watch Kyle, but it's also because we need more breaks than your typical parents and we take them...often.
 
We find that most parents of typical kids or kids on the spectrum are not selfish enough.  But we are selfish and get in our couple time and our alone time as necessary to make us better parents to Kyle.  I'm on my company bowling team & I'm in a marathon running group. Those are currently my two outlets. The wife has several different mommy groups that she hangs with and there must be a moms night out and a mommy lunch at least 3-4 x a month. Those are the things we do individually to recharge our batteries. Then together we go to concerts (Weezer, Bon Jovi), out to dinner, out to plays in NYC, out late late to have a few beers and see a great bar band in a local dive bar.
 

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We often ask other couples to join us and we always hear "oh i'd love to but I can't stay out that late anymore or I'll pay for it tomorrow" and we're like suck it up old timers!  You only live once, I'll take only 5 hours sleep and a crazy Kyle for a great night out.
 
Anyway I'm rambling but it just dawned on me why the wife and I are still very much the same.  Kyle is currently kinda staying the same.  While our friends with typical kids lives change as their kids mature,
we've been kinda raising a non-verbal 18month old for 7 years now. Our lives are kinda like the movie Groundhog Day, we're replaying the same day over and over.
 
So our ways of dealing with it is to still act like dorky 23 year olds. I mean the wife and i still curse like sailors. We are perfectly fine if Kyle's first words are MF-er. We still sometimes wait for Kyle to fall asleep and then we eat dinner on trays in front of the tv.  We are big kids are heart. And we are both 41 years old and I honestly don't see that ever changing.
 
I picture me & the wife at 60 years old at the diner at 2am after a great night out, negotiating with a sitter (watching a 27 year old Kyle) to stay for an extra hour so we can get another brownie ala mode.
 
Ok so I havent planned that far ahead.... That'll be an expensive sitter in 2030 watching a 27 year old man...   My plans for 2030 are for another more serious note...
 
Amyway that's all I got. Just wanted to tell you all how selfish the wife and I are and to implore all of you to get out and reward yourselves as often as you can!!

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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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