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

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

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(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!!


Written by

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” :-).


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41 People Replies to “Autism Daddy & wifey are selfish & we like to go out & party :-)”

  1. Anonymous

    Let me add that when they do babysit the once a year, they are telling me to hurry up, don't take too long, etc etc the whole flippin' time. It's a miracle if the kids can sleep over but that's dropping them off 8pm and pick up 9am. Well, my son will even let me sleep til 9am. I can't last until 2am, so even this scenario really just translates into 3-4 hours of freedom.

  2. Anonymous

    I am divorced and barely get by, financially. Can't count on child support, and the jerk doesn't even see the kids. I have two that are typical, and one with severe autism. My family babysits on average, no joke here, 1-2 times a year. They refuse to even TRY to understand or sympathize. They had one child at a time, since my sister is ten years younger than me. They've seen me stay so stressed, I have cried, screamed, and cussed at work, at them, you name it. There's just no concern here. It doesn't matter what I say, think, or feel… They refuse to be supportive in any fashion. I've offered to pay them, and still get rejected. Nothing is good enough. They've never helped me along this journey, and my son is 13. Then they have the nerve to judge and try to dictate my life. I hear how they didn't get to go out. (Well I remember neighbors or a relative couple coming over for a night of dinner and drinking.. My sister and I are typical, it's not like we were in the way.) They had to pay my grandmother to watch my sister so my mom could work during the summer.. Umm, they won't even babysit so that I could work another job. Oh schools out, teacher work day or inclement weather? Spring or winter break? Oh well. I get to stay home with no way to make money on those days… Then they have the nerve to run their mouths when I'm broke a d struggling. Somehow they are convinced that I should have money, and be perfectly fine with a life that lacks something as simple as encouraging words… Never mind physical help or anything else.
    Screw those that think you don't deserve a break.

    -35 year old mom of autism

    1. I feel time "away" is necessary to recharge. Drop me a message on my Google+ if you would like to talk or need a shoulder. Even if it is over the phone or internet, it helps to have someone to talk to.

  3. You both are so lucky! I do not have family to help. My mom is raising my 30 year old sister who is quadriplegic and had CP. Her watching my 3 one being Autistic and another a toddler, on top of taking care of my sister would just be too much. She dies take the kids individually here and there, but I would never ask her to take all three. It would be way too much! I wish my husband and I could time together. It makes me sad, because I feel We have grown so far apart due to him working, me taking care of kids 24/7, the appointments, therapy etc. In the last 3 years we haven't even been able to go out to celebrate our anniversary. : (

  4. Anonymous

    Our son is now 22 years old and we try to get at least one Saturday a month as adult only time! I remember the days when we had absolutely no one because everyone was terrified of his seizures. We were lucky to get an hour to run errands. It's easier now that our other three kids are older and can help out. Its hard to find babysitters for a 22 yr old with seizures, autism, and still in briefs; but as long as he's dry before we leave our teenagers are alright with it. They are amazing little humans and know their brother well. They are even medical pros in a pinch. We don't burden them with it often but when we don't have any other respite options, they step up. They do it gladly when they know they will be getting paid for their efforts 🙂 I truly enjoy reading your blog.

  5. Anonymous

    I love the topic and the idea behind this blog. However, With a child Autism and medical conditions honestly we cant afford it. Therapy's, services, cp pays deductables…. how can you afford it?

  6. Anonymous

    Out of all your blogs this one made soooo happy!! I've always wondered about your "you" time or your "alone time" with the wifey because taking care of you and your marriage is OH SOOOO important! I absolutely loved everything about this post and so happy to hear that you have some down time and time to let loose. Thank goodness!! 🙂 It's Never selfish! Enjoy it every time I say : )
    -Abby B.

  7. Thank you for sharing. Is so true many parents don't take care of themselves and we need to be able to have some time to ourselves to be able to handle all life has to offer. When we take care of ourselves and have fun and relax we are then better able to deal with our daily responsibilities. I am a widowed single Parent with a special needs teen and I also try my best do take care of myself.

  8. We do it to have to have time for ourselves Whoooo

  9. And I throw in a high 5…good for you! now that we have a respite care provider…we are getting more selfish too!

  10. We don't get any family support, so I say GO and ENJOY!!!

  11. Hubby is out of town every other week which makes some days harder than others. However, it also came with a bonus, he accumulates free nights at some pretty nice hotels. So, once a month we take a night for ourselves. We don't usually do any wild partying, we just use the time to enjoy the quiet and each other's uninterrupted company. Our children are 23, 20, 19, and 4 so, it's nicer for the kids when we come home after our batteries have been recharged. And it's healthier for everyone to have parent's who clearly love each other and prioritize themselves and their marriage. Kudos to you both.

  12. Anonymous

    This is not selfish at all. As a single Mom without any family to help it is incredibly challenging to find babysitters-but I still manage to network and barter/pay for childcare about once or twice a month to get some "me" time-sometimes a date, sometimes just to sit in a library, café. pretty much anywhere and not be Supermom for even just an hour. If I can find the time anyone can. Don't you dare let anyone make you feel guilty for taking the time-enjoy it!!!

  13. Anonymous

    Thank you so much for putting this common situation into a new light for me. I'm a autism grandma and have recently thought his parents were acting selfishly for wanting "alone" time since I am the one left at home with him. Shame on me… We all get tired and stressed. I guess the old saying is particularly true in this case. 'It takes a village to raise a child.' Don't remember where or who it came from though.

  14. Anonymous

    My husband and I are like you guys! YAY! Tired of people making us feel bad for valuing each other and our alone time.

  15. Anonymous

    I think it is awesome and very necessary to take time for yourself and your marriage. That being said, I wish there was more help for parents like my husband and myself to receive respit care for our son with Autism. We have no family help (parents are elderly and can not help) and no one will work with our son or visit him enough so that we could leave him for short periods of time with out meltdowns (he has major stranger danger, even to people who have been in our lives since he was born). My husband and I are soooo tired and burned out (we are also in our early 40's) and I do not see any light at the end of the tunnel anytime soon. I could not even imagine things staying the same and us surviving until we are in our 60's. On that note, thanks for all your post as we love to read about your plight and see the comments on your blog. (We really do not have anyone/groups to discuss our Autism life with and this does really help) 🙂

  16. Anonymous

    Family !!! what's that ?? as he get older and bigger the less they or friends will have anything to do with him. No one want to deal with his meltdowns or change a 14yr old diaper. So home I stay !! if it wasn't for school I would never get a break,even ask staff @ school would they keep him I offer to pay they almost laugh in my face before saying no.

  17. Anonymous

    you guys amaze me…I changed with autism and not for the better…I hate leaving the house, I have very few friends left, they left when I was a single mom and couldn't leave because Braxton wouldn't eat for anyone else so I had to leave after I fed him and be back before he needed to eat again. I hate leaving the house, it's almost a phobia now.
    Keep doing what you do and keep posting…you give me hope for the future so thank you!…Beth S. Bollig

  18. Anonymous

    I just spent the last hour reading your blog. I love it. I really needed to hear this specific post tonight. My son was just diagnosed and the past 3 months I've barely taken a second to scarf down a meal with my husband, let alone go out to dinner with him or see a movie. Think I might just plan something for us this weekend. He'll be shocked. The second I wake up autism is on my brain and it's the last thing I think about before I go to sleep. Thank you for your wonderful blog. I'll be reading much more. You sound like an awesome man and father and your wife is lucky to have you. -LAUREN-

  19. Like others, I needed to hear this. I feel selfish asking for time away, and like we can't get away as a couple…But right now I vow to change that! Thank you, Autism Daddy!

  20. Anonymous

    Wow, you are incredibly fortunate to have such wonderful family that makes it possible for you to take the necessary time you both need! Never take that for granted 🙂 I'm envious because I don't ever get a break, I am with my 4 1/2 year old severely autistic and adhd daughter all day, every day and I'm responsible for everything around here. I'm a married single mother and it's hard, real hard. I have few friends (not in state) and my family lives in another state so I'm alone. No money to afford a baby sitter as we are incredibly poor, besides I'd have a hard time just having anyone watch my daughter…I don't think you or your wife are selfish, we all need re-charging, we all need breaks…most of us just don't get them!

  21. Anonymous

    Go out!!! what's that? my free time is when he's in school but most friends are @ work.As for child-care family refuse due to behaviors and diapers,babysitters charge so much ($10-$15 a hour)so can't afford that.I would love to have lunch or dinner dates w/the girls,go shopping w/out waiting on that phone call,my friends don't even call anymore to ask me out or over because I can't really visit like they do have to keep a eye on him every min make sure he don't hit anyone or damage anything.So my life is his life for the rest of my life and yes I fine myself jealous of my friends and their life,s.

    1. I'm exactly the same..I'm single parent with 3kids.no sitter EVER,family wont do it either..I have no friends at all as I moved to a new area for a fresh start..kids with 24/7..in my spare time I sleep at night lol or clean 🙁 I'm whining I no…I'm sorry

    2. Anonymous

      us too xxx

  22. I absolutely love this! Keep rocking, especially to weezer

  23. I am so glad that you take the time necessary to recharge yourself! It was one of the hardest lessons I had to learn after my son was diagnosed with Autism 5+years ago. We can't give if we don't have so go out and come back and live on!!

  24. I couldn't agree more. I wish we could get out more.. We don't have people who can watch our son.. Our families won't babysit because they don't feel they can handle him and professional respite is crazy expensive.

  25. Kristy

    You are not selfish at all and I say if you have family and friends who are willing to help you out with Kyle and give you and the wife down time to just be with one another the Hell yeah do it. My husband and I have 5 boys 1 he brought into the relationship and 2 I brought and then our twins together who will be 5 on Sunday and I tell ya we take as much time away from the house as we can because if we didnt we would probably kill each other..lol Our Twins were just diagnosed with some of the spectrum disorders and have been kicked out of 3 daycares because I didnt feel they were emotionally ready for pre k so Im home with them all day every day and my breaks are much needed and taken and I dont feel selfish at all !! I do have one question for you how does Kyle do in school?? Im so nervous about them starting Kindergarden with the way they behave some times and now adays some teachers are so ugly to kids it just makes me nervous!! Well hope your day is awesome and keep on enjoying your alone time with the wife mine and the hubbys next away time is in 3weeks to the Southern 500 Im a big time Nascar fan so we get 3 days away yay:o)

  26. Anonymous

    My hisband and I have had exactly one date since our son was diagnosed. Family is not really an option for childcare and we can't seem to find a babysitter. My husband gets out several times a year to see a concert with friends but somehow I can never manage it.

  27. I am glad you can go out. And envious. we have no family who will/can watch all three. Sometimes I am extremely resentful. We give each other breaks, but it is rarely (2 times per year?) together. Family gets old–relish what you have while you have it.

  28. Anonymous

    Hi A daddy. I have been following your blog for a short while. Sorry if you already answered this or if it's too personal – if so delete immiedatly. Do you guys have other children? If not was autism a deciding factor?

  29. We're lucky if we get out once a month here…

  30. Anonymous

    this made me cry. I am fun. My husband is fun. Since we had our son I feel like I've lost my best friend because we are both so stressed out. BUT HEY, things have to get better right? I think Im going to start interviewing babysitters. There has to be someone out there that I can trust. My family is all burnt out 🙁

    1. Brad Avrich

      I hear you! I have 3 year old twin boys. One has non verbal autism and the other is typical. My family is kind of useless. They don't see the kids much so my gf won't let them watch the kids. Her mother watches them every day while we work so we can't really ask her to watch them for dates on the weekend. We haven't had a date since July and that was a quick movie no dinner. We are burnt out too.

    2. Anonymous

      Know the feeling hun xxx

  31. Anonymous

    Good for you! My husband is still the same "kid" I married, but I am not. I have turned into an old fogey. I'm impressed you do what you do. I think I will make myself a New Year Resolution to do more fun stuff without our ASD kid. Thanks for the inspiration!

  32. Anonymous

    Sounds pretty much like my daughter's situation…and after spending a day with my grandson, Noah going from opening the fridge to turning on the hot water 100 + times in a row, I need a break too. My daughter also likes the "F" word and as much as I tell her to watch her mouth, hearing my grandson say it would be music to my ears. Keep up the good work!

  33. Anonymous

    So True….

  34. Joe Theisen

    All I have to say is AMEN BROTHER!

    1. sarah furness

      I think as parents of non typical kids we need to be selfish or we get lost in the shuffle or we explode from the pent up emotions. Do what you need to do, I am like your wife I find yoga and running very therapeutic!