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… 🙂
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Couldn't have said it better myself!
i hate the articles mailed to me by relatives- drives me crazy!!! Really- it may be vaccines??It may be environmental ?? no shit!!
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?
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.
Sorry. As a father with two daughters on the spectrum I don't share your hangups. But it's cool that you can vent.
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 :-)
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!
Right? Who has time for prim time TV? When the TV is on it is on for the kids.
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.
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.
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.
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