The Kiddo is now ten. Trust me Honey, I have tried. Whatever you are suggesting, we have done and then some.
I know this is being said to me because you want to help. You see us struggling. You want to see him succeed. You love him. You love us. Or you think we are clueless and need direction. You're providing a public service. Aren't you a sweetheart?
Please realize though, there comes a point where as a family you have been there, done that and sent the postcard.
You see, sometimes despite doing all these things, it's not enough. You may have the mind set that doing these things will fix a problem and make the thing go away. It doesn't work like that though. Trust me. I've learned that by experience. When you try your umpteenth wonder fix and it doesn't work out the way you think it will, you just start realizing you have to pick your pony for each race. Sometimes you don't even want to race. Sometimes you just want to sit on the couch and watch a Netflix.
I know for myself it went from trying things to help make things go away to trying things to nip things in the bud to finally just trying things that just help him cope.
I also learned that he wasn't always the one that needed to be subject to the "Have you tried...". It's about me too.
Oh you're an autism parent too so you know? Nope, you don't. You know the autism you live with not the one residing at this house, thank you very much. I've been guilty of doing this too. I have to remind myself the same thing. The autism you live with tends to give you the worse view of tunnel vision on the topic. Honestly it took starting this blog for me to start realizing I needed open my mind a bit more. It's amazing what a few emails or blog comments that say "Nope!" can do to your outlook and your ego. Both good and bad.
The only trying I'm interested in trying right now is just getting through another day. I am going to try and get a few loads of laundry done. I'm going to try and figure out what to do with that pound of chopped beef I have defrosting in the fridge for dinner. I'm going to try to remember the new recycling pick up schedule for my town. I'm going to try to get the kiddo to practice his piano when he gets home from school. Mostly, I'm going to try to let autism not completely try my patience. (Although it often does.)
So if you wouldn't mind, hold back on the "Have you tried...". Unless it's something like "Have you tried this new restaurant? I insist you do. Here's a gift card to it and I will babysit your kid while you go." I'm never going to say no to that.
Wait a minute. Someone out there is taking offence to this post. They are really pissed. They are about to rattle off some story of a terrible parent they know and how ungrateful I must be. That's cool by me because yeah, we may be special needs parents but we're not freaking saints here. We can suck just as much as the next guy. Trust me, I am very well aware of my flaws. The nice part about being a blogger is that there is someone nearly every day online writing to point them out to me. How handy of them to provide a list! I bet someone is pressing "send" just now on an email they crafted about how worried they are about my kiddo's eating habits. "Have you tried..." and yadda,yadda, yadda. Nope, I didn't. Never heard of it. Why don't you come pick up my kiddo and show me how? Don't worry. I'm laughing with you, not at you. Promise. ;-)
When white privilege intersects with Autism. I work at a clinic in an impoverished, largely minority area. Not only have the parents not tried, they haven't HEARD OF most interventions. We don't have a lot of books on supplements, diets, or even Floortime available in Spanish. So, unlike you, I DON'T ASSUME.
ReplyDelete"You know the autism you live with not the one residing at this house, thank you very much. I've been guilty of doing this too. I have to remind myself the same thing. The autism you live with tends to give you the worse view of tunnel vision on the topic."
DeleteOh I didn't realize you wrote this over here too Tara. Well, thanks for proving my point in the above quote. Happy Holidays!
This is exactly why I left that autism social media thing, what's it called. Can't even remember. It's like Facebook but for autism parents. And I also disabled the comment section on my blog. Because of people writing stupid crap before they just THINK about it. That I do have a brain too and can also use the internet and Google to find the same information. And yes I have tried blending the hell out of everything. Yes, we have a bucket of dried beans. Yes, I have tried TELLING HER TO STOP. (That was the best one of all.) Then my rage subsided and I enabled the comments on my blog again. But thankfully no one really reads it so I don't have to worry too much.
ReplyDelete"Anonymous" above is an example of writing stupid crap without thinking it through first. A parent like you who writes a blog about their experience with autism likely is not the uninformed variety of parent lacking access to information. And for those you meet outside the blog world, I'm just guessing here, but I bet you don't come across as an impoverished ESL parent who needs help.
ReplyDeleteHave you considered asking the parents whose autistic kids don’t behave like shrieking, property-damaging, poopy-Picassos what they are doing RIGHT?
Have you considered that whatever YOU are doing isn’t working, your kid seems miserable as a result and that trying something else might actually WORK?
Something like 1 in 68 kids are diagnosed with autism and it is clearly possible to teach them to behave in a non-feral manner – they’re daughter’s classmates, my son’s fellow scouts, my nephew, a kid or two in any Sunday school class, etc. THESE autistic kids have parents who love them enough to get them [help, in whatever form works].
Wow. I am so glad God gave my son to me and not to you. You have no idea what you are talking about. Autism teaches me about compassion not conformity. Just remember someday you will be tested with something that is beyond your control. I sure hope when that does happen, people do not react to you in such an illeducated way. You have my pity.
Delete"They are about to rattle off some story of a terrible parent they know and how ungrateful I must be. That's cool by me because yeah, we may be special needs parents but we're not freaking saints here. We can suck just as much as the next guy. Trust me, I am very well aware of my flaws. The nice part about being a blogger is that there is someone nearly every day online writing to point them out to me. How handy of them to provide a list! I bet someone is pressing "send" just now on an email they crafted "
DeleteThanks, you just proved my point. :-) Appreciate it. Merry Christmas!
You see a shrieking kid out in public and think "their parents don't love them enough"?! How about looking at it like their parents love them so much they're willing to put up with passive aggressive and maybe sometimes aggressive aggressive shit from people like you just because they want their child exposed to as much of the chaos of "real" life as possible in the hope that their coping skills might minutely tick up the scale toward functional? Maybe they don't even care you're a bitch, because they can't spare a second worrying about it when they feel guilty leaving their feral child with friends or a sitter but goddammit someone has to go to the store to buy toothpaste some time, and the focus is to get in and out as quickly as possible so they only offend 5 insensitive jackasses instead of 20. Whether you think it's fair of them to interrupt your reverie in the shampoo aisle or whatever is a different matter--that just makes you a dick.
DeleteI'm new to this, (known my guy has been "different" for 9 months, official diagnosis two weeks ago) and so I'm still trying to find a balanced way of looking at all of it. Anger still bubbles up. I'm speaking only for myself, obviously. Because, you know, I'm not a "them". My child has his own unique set of quirks and so my situation is likely different from everyone else's. I don't have a shrieker, or property-damager or poopy picasso, by the way. Wouldn't want those behaviors added to my kid's list, but thinking about how absolutely desperate i've been to find ways to alleviate some of our relatively minor (on the "annoying that crabby ass stranger scale") issues I can't help but feel angsty when I see people assuming autistic behaviors persist because of a lack of effort and love.
Have YOU considered that you're an asshole?
DeleteI may well be an asshole... but I'm one that spends a lot of time with two autistic kids (nephew & close friend of my daughter) who became SO MUCH less unhappy once [adequate professional help & devoted parents] gave them a way to make their needs known. And will tell me (or you or teacher or dad) so if asked.
DeleteNephew now speaks, daughter's BFF has an iPad talker and, well, both quickly figured out telling a grownup "my shirt is so itchy it hurts" / "cauliflower smells like barf" (to choose but two examples from last weekend) works waaaay better than [SIB meltdown]. I can't even tell you what a HUGE difference removing a daily, hour-long sensory meltdown on weekdays has made to my sister's sanity. My loves that she can have sleepovers with BFF, because of the iPad talker.
I'm simply aghast that any parent of an autistic kid wouldn't want to IMPROVE the quality of their kid's life by teaching them to communicate! That a loving parent would prefer to watch their kid hurt themselves or siblings/friends than to get them HELP THAT EXISTS!.
You're still making a couple off-putting assumptions:
Delete1) Because kids you know have made great strides in functional communication it is possible for every child to follow a similar rapid trajectory.
2) If a child hasn't made great strides in functional communication it means their parents either don't love them, don't want them too communicate, or both.
Anonymous--What does race have to do with what this blogger is writing? If you work in a clinic, of course you are going to be expected to offer help/support/advice. There are people of every colour that may be impoverished and unaware of treatments due to socioeconomic situations. The blogger is referencing himself, and perhaps others like him who have access to research and are known to have tried various treatments.
ReplyDeleteHerself actually but yes, thank you. :-)
DeleteSuzanne, you are a terrible person. I have an autistic son who screams, a lot (and also has a lot of wonderful qualities just like every other child does) Does that make me a terrible mother who isn't doing it RIGHT? No, we have been in four kinds of therapy since he turned 1 and he is 4 now and we still deal with the behaviors. There is no FIX, we just learn to make the best of whatever he needs to do is cope. Kids with autism have behaviors, it doesn't matter what you do or try. You are the exact reason why I wish my child didn't have autism, people like YOU who are so quick to judge me as a parent and my innocent son for having autism. You are a deplorable human being. It is so sad that people like you judge an autistic kid with behaviors and assume it's the parents fault. Us parents with special needs children pour our hearts and souls into helping our children, but that isn't going to ever completely take their struggles away. You are welcome to come babysit my son, try to fix him! Be my guest ;)
ReplyDeleteYes there are many kids with autism that are blending in and are boy scouts, girl scouts, in church groups, and classmates. But you have no idea what therapies they have gone through to get to that point, let alone where the fall on the spectrum. Maybe they are lucky enough to fall on the high functioning end of the spectrum so it only took 6 years of therapy to conform to your idea of appropriate behavior. But do you have any idea how many children were just labeled as problem children or adhd until recently? And they were in boy scouts, and classrooms and so on and so forth.
ReplyDeleteHoly guacamole people! First of all Mama Fry is talking about other well meaning parents, grandparents ect. She is NOT talking about clinic workers or other professionals in whom she is seeking advice. Also to Suzanne. That is wonderful to know that you are children's gift from God. I am quite sure that every parent that I know is doing the best that they can with what has been given to them. If you attend church then you might want to ask your pastor about what pride does to your soul.
ReplyDeleteUM, Wow - okay - here goes with my opinion:
ReplyDeleteI too have gotten rather tired of hearing about all the 'new' treatments/diets/brocolli/airpollution or whatever the media is dishing up for the day that I am supposed to be doing or not doing with my child. I know that those people who continuously fill my inbox with the latest news article mean well, but really - I have a google alert set up for every article on the internet with the word autism in it - believe me I have not only seen the article, I have seen it repeated across the country as different news outlets pick up the story - so thanks, but I got it covered.
I totally get where you are coming from. I get that it is well-intentioned but at the end of the day, if it is good for my boy, I have probably heard about it and discussed it with professionals. I know my boy and these other well-meaning people don't, at least not the way that I do.
ReplyDeleteI think people are missing the point of this blog. It's not a happy fun time blog where everything is roses and sunshine, it's real. It's venting. It's therapy for the writer. The writer isn't thinking of everyone else' delicate sensibilities, they're writing this for themselves and for those who are in the same boat. I feel you. I've totally been there, and I've had the urge to punch well-meaning people in the face for the same things, I get it. The writer said at the beginning that they know these people are well-meaning, but that doesn't mean we're not sick of hearing it. We're not perfect. We're people. We love our kids, but when you're not sleeping and then you have to clean up smeared poop for the millionth time you start to lose your mind a bit or a lot sometimes. So when someone who has zero experience tries to tell you what you should do it's exhausting to just put a smile on your face and say "okay, thanks". Hence... the venting blog.
ReplyDelete...loved the post by the way.
thank you. :-)
DeleteLove your blog and especially your perspective. I agree with you wholeheartedly...not every method or theory works for every autistic child. Keep doing what you do
ReplyDeleteI'm curious to know why most of the haters post as anonymous where as the people with something constructive to say put their name. Just sayin'.
ReplyDeleteThanks for the post, I hear you. Another mum once told me "If you know one child with autism you know one child with autism". I've had people with two autistic children of their own misconstrue my boy's behaviour because his issues are different. Anyone with a one size fits all solution sure hasn't posted where I'm reading. Keep doing what you are doing and hold your head up high. Even parents of NT kids get it wrong sometimes.
Oh wow do I "get this." I have heard everything from "take him off milk 'cause autism is an allergy to milk" to "have you tried a chiropractor 'cause they cure autism all the time...." Oh, and then there is Disney therapy and broccoli now. UGH. Lisa from Quirks and Chaos
ReplyDeleteI get this too, my mum still says ( son is 27) have you tried telling him off!!!! Hahahahaa x
ReplyDeleteSome people just don't understand that not everyone is wired the same way. I am an autistic flutist in a high school band.
ReplyDelete