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!!






37 comments:

  1. i hate the articles mailed to me by relatives- drives me crazy!!! Really- it may be vaccines??It may be environmental ?? no shit!!

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  2. Not an autism parent but very much enjoy reading your comments and posts. I can see how some of the things above might be bothersome but do you have any suggestion as to how you WOULD like to discuss autism? I am guilty of emailing an article or making physical observations to avoid the more difficult developmental markers. What is a good way to talk to an autism family?

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  3. You're not alone on this one Autism Daddy... I am here with you too on these. It's hard...

    I must admit though I appreciate it when the comments/talks are made based on honest caring or concern. That's sadly a rarity for my sons and me as we are usually recieving cruel and blunt attacks (sometimes even threats...) or are neglected and outcasted so it's nice to get a break from all that when someone is actually trying to be nice for a change. Even if the comments made still tend to sting or rub wrong at times.

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  4. Sorry. As a father with two daughters on the spectrum I don't share your hangups. But it's cool that you can vent.

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    1. I'm guessing thats because "As a father with two daughters on the spectrum" your experience is very different from "a father of a severely autistic non verbal boy" like AD or myself. I know what "on the spectrum" means :-)

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  5. My hang-up is when people with perfectly good intentions ask me, "So did you see the story on Today/60 Minutes/20-20/Nightline about autism?" The answer is NO, I was too busy taking care of an autistic kid to watch TV!

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    1. Right? Who has time for prim time TV? When the TV is on it is on for the kids.

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  6. The day of my son's IEP I saw the basketball story on FB. It pissed me off. I know it was meant to be a feel good story, but all I could think was WTF? Where was the dad all this time? How was the dad not acting as and advocate for his son? How could the coach not know the kid was that talented? Both my kids have autism, but it does not have them. They are going to do something with their lives whatever their talent is. And I don't want them on the local news as the "feel good story" that is just fucking insulting.

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  7. I can relate to these. I had an experience with a friend over the weekend that made me think if this friendship will last because I honestly don't think that people who don't live my life get it or will ever get it. kwim? I haven't learned how to turn off being a Autism Mom yet even in fun social settings.

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  8. I can relate. One hang up I have is that I have two children and I will only be asked how one or the other is doing.

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  9. Thanks for being human! No autism in my home (it's all at work), but when I had prolonged infertility I did the same stuff you are doing. I got sick of people giving me advice about how to get pregnant (adopt, relax, special diet); sick of people asking if I was pregnant or gotten my period; sick of people telling me they were pregnant or avoiding telling me they were pregnant. I felt like a victim, I admit it. ~Zennifer

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  10. i think it ok for you to have other things to talk about besides your son .my parents got that or realitved saty that to me for along time you goton so big since we saw you last maybe they didnt no what to say to me to .or they would or do ask qustion about me sometimes im in ear shot .my mom will say you can ask her she over there .things that drive me crzy as having autism that people do is say oh everyone like that or im same way .i want to say oh really you have meltdowns or feel like your going to have one if you dont leave the store .it like there denying the proublems i deal with unless im with this one family member an then iot hjer proublem cuse she getting embareeedd then she exp[lasing that i have autism grrrrrrrrrrrr or talking to me like im 4 or asking my parents if im like rainman cuse im an artist

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  11. I have a 13 year old son on spectrum and I can relate to everything you said! Why is it that people assumme that parents haven't already read-up on eveything and tried it too? recently at work a co-worker came to after the Newtown incident and asked if my son could do that. I looked at the woman in totally and complete wonder. "Hey my kids not the head of the football team or a cheerleader like yours (and yes I am tired of hearing about fantastic they are TYVM) but, we have taught our son right from wrong, just because that child was on spectrum and had issues doesn't mean mine does too." We live in a sick and twisted world where people have no idea how to behave to each other much less to something that they don't understand. Hang tough and stand tall.

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  12. Agreed AD as always you say what "most" of us are thinking and living. I dislike all the "well you should do this and you should do that" and the older geneneration (and I'm a mom in her 40's) so I'm talking about the grandparents who still cannot accept a diagnosis and still can't understand that sitting at dinner in front of a tv or watching a dvd player during dinner to have your child actually sit there and eat dinner (the little battles and if it works do it!) who cares, is he eating dinner - YES. There is not one person who understands unless they live with someone with Autism, end of story. And the worse comment ever "he is so special, God only gives you what you can handle" . . well guess what there are days that you can't handle it and you can sit on your bedroom floor and cry your eyes out because Autism - SUCKS!!!! No he isn't special, he was actually given a raw deal that I wish on no one . . . okay I feel better venting.

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  13. You may attributing the "Wow he's gotten so big" as an 'autism' thing when its not lol...I have older relatives that say that about my kids, (all NT) everytime they see them...

    My name is Patricia not Anonymous
    but if I forgtet to choose the appropiate comment as choice before typing it erases my post

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  14. I agree with you entirely, in fact just this morning I was feeling guilty with myself for not being happy enough - or trying harder - or pushing more. My 8 year old ASD son ("middle" functioning, verbal but not able to communicate, working on toileting skills still) has been in the same lull for about a year. Its a quiet time. I've taken a break from fighting with school over IEP issues, health insurance over uncovered therapy needs, and scrambling to find backup people to fill his social skills hours so he doesn't lose that program. Still waiting for HBTS services, about 16 months now. There has just been no development... This isn't a bad thing. Up until July we had severe aggression, lots of spacey episodes daily, and total chaos. Things have evened out... we still have meltdowns daily, but he isn't trying to attack anyone, and he has not been self injurious in several weeks. People have stopped asking for updates, and honestly there is no update... there's been no change.
    The only area I can honestly say i'm pleased with is how he now eats, and eats, and eats! He FINALLY hit 50lbs this month. He even had a growth spurt, I had to buy new shoes! (Buying new shoes for him, nearly impossible with his sensory issues). I believe our lull is from avoiding Gluten since August. I don't think it "helped" his Autism, but he had severe reflux and growth concerns, and that's where I see a change. Honestly, just about the only thing anyone could say from last year til now is "Wow, he's gotten bigger!" There's really nothing else to say.
    ~Melanie

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  15. Just like every kid with autism is different every parent with a kid with autism has different hang-ups. The one I hate most is people that give me the neuro-diversity statements and thinking they're going to help me. "I don't think of autism as an illness, it's just a different way of being."
    It's so tempting to answer with "Oh yeah? Then you are either horribly ignorant or a complete idiot." Of course, I don't say that.

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  16. I have things that annoy me too. I had someone refer to my 2 year old as "a bit slow" the other day. Really? He is able to count to 15 and can tell you the colour of anything you ask him about. Yup, slow as.

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  17. I once explained to a coworker about my son's autism and she said don't worry he will find a good wife one day.

    WTF?

    Are there really women out there just dying to marry a non-verbal autistic?

    I just laughed and walked away.

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  18. That makes me feel better, I was really startin to think I was just a bitch ! lol Has he gotten bigger ? NO he was 5'6 when I popped him out ! Sarcasm is a crutch. Got a new one though , a concerned family member who I haven't seen since I was like 5 , who I didn't even know knew I had a son w/ ASD said this. "Is he getting better ? with a real serious face, better than what ? Well you know that switch that you need not to flip cause bad things will happen, yeah . " Better at wiping his ass ? better at eating without wearing it? better at keeping his hands out of his pants? better at bathing without flooding the whole bathroom, better at spinning ? better at flapping ? better at yelling curse words ? (yeah that's new)better at putting his pull up on ? BETTER at what exactly ?? You know I know people would like to acknowledge it, or say they are there for you, or send you useless e-mails about how so an so cured her kid, whatever. but SERIOUSLY, someone needs to write a manual, what not to say, think or insinuate when you are in the proximity of an ASD parent! And if you haven't been there for me in the past 14yrs than don't make like you will be there now, I don't need you ! :)

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    1. Is he better now? That is my favorite question! Better than what? Some people are idiots and yes I feel like a bitch for the things I think but do not say out loud. I am afraid someday I might actually say what I am thinking.

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  19. My own personal pet peeve?

    When you meet someone and they learn you have a child with autism (or, in my case, 2) and they chime in with something like "Oh. My cousin's girlfriend's coworker's brother's stepson is autistic."

    a. Well, it's not a club, but if it were, that doesn't get you a membership.

    b. People are not autistic. People have autism, which is accompanied by autistic qualities. If you knew someone who had a tumor, would you say "Oh, him? He's cancerous."? No.

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  20. My MIL doesn't believe there is anything wrong with my son that "a good spanking won't take care of". I loathe that woman!

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    1. It sounds like she's the one who could do with a good spanking...

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  21. My family an some friends have told me they just don't know what to do or say to us that don't offend us,so they just avoid us that way they can't say the wrong thing. Plus they refuse to babysit him because he wear diapers @ age 9 they think I act like they owe me something because of my son issues. I read a comment where a lady said her family comment to her was your child,your problem deal with it and I do.

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  22. I can totally relate to this. My kid is progressing slowly and the above still bother me.

    How about this...the chit chat of stay at home moms who have typical children. It is like sticking needles in my eyeballs listening to the "problems" they have. I know it is not fair and they have not walked in my shoes, but I just can't stand it.

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  23. One time, a friend´s friend learned about my 3 yo kid´s autism, I think she googled AUTISM and emailed me the first link she got. People mean well but they can really be jerks. Also have countless stories of people sending me articles and inspirational stories about austistic people with super powers.

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  24. This put a perspective on myself that I didn't even know I needed. Thank you. My 18 year-old son is on the spectrum and my friend has a 12 year-old with full autism. When she was little the response she was always given was, "but she's so pretty!" To which her dad would reply, without missing a beat because it happened all the time, "yes, it was always our goal to have the prettiest girl in the mental health ward." People mean well, but like you said, sometimes there are no right words.

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  25. I totally see what you mean, any tips for us non parents to ask the right amount of questions? I would hate to ask too much but I also don't want to seem uncaring. . .

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  26. That is the EXACT same way with me!

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  27. That's why I don't say any thing but hello and bye. I read all the posts that say don't ask this, don't ask that or how offensive the questions are so the best thing to do is leave them alone. You're damn if you do, damn if you don't so why try.

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  28. Number 4 is my all time hang up. I'm glad Jenny McCarthy is out of the spot light with her son being cured of autism. That is all I heard about for two years. I have also received countless news paper clippings. If there is a cure four autism is going to be bigger than a news paper or magazine article.

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    1. That's why it's best to leave the families alone with their life. But yet some whine that people don't care or ask to help.

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  29. You say it like it is. I know. Thank you for being so open. It is encouraging to know I am not alone.

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  30. Wonderful! I completely agree especially with point one. There is just no pleasing me either, it seems. BTW, I have a son with severe autism and also two other kids so I can vouch for the fact that "Wow, he's gotten so big!" is said about all kids, at every stage. It's not a diss or a miss, just a default response to seeing a kid you haven't seen in a while. I think you probably feel it bad because you wish there could be some more stuff to exclaim and be happy about (that's how I feel too in regards to my own severe ASD son.)

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  31. OMG the articles we get sent! Yeah, thanks for your armchair QB'ing, we actually have to deal with this for realz and are not accepting homework assignments. I now tell them I don't read that stuff (of course I do) because I do not want to have in-depth conversations about how this new revelation (yawn) may impact our on the spectrum child rearing strategies.

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