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Wednesday, January 7, 2015

"At least your kid talks."

I hear this a lot.  It's meant to check me into reality that the autism I am familiar with isn't every one's.  I get it but here's the thing.  (Hey, it's a blog. You knew the "but" was coming.)

There's a difference between talking and successfully communicating.  Yeah, my kiddo can now say lots of words.  Some are even the four letter variety that he learned from his dear old mom.  I kind of wish he didn't pick those ones up and that's my own fault for saying them around him.  I kind of also wish that he wouldn't just decide "Oh I'm just going to say this certain set of words all day. For everything."  It's like he has thousands of words in his head and only about twenty or so of them actually come out of his mouth on any given day.

Which makes trying to have a conversation with him really freaking hard! Sometimes I ache just to be able to have a conversation with my Kiddo that's not like pulling teeth.  The constant redirection.  The fishing for answers to the simplest of questions.  All the prompting.  It grinds a gal down.  I'm not asking for a two hour talk about the finer points of his day but to hear  "It was okay." about how school went would be nice.  Or even if it sucked. I would love to know that he was really pissed off that day.  "Like they served hot dogs when the lunch menu clearly stated it was pizza day."  A legit reason to rant and rave.  He can't do that.  He won't do that.  Sometimes I can only just sense he is mad and it's a great big old guessing game of what's wrong. When your kiddo screams "TATER TOTS!" again and again for an hour, you start to question why you are sending him to speech therapy to get him to talk in the first place.

There is the constant need for me to be his translator to every one we meet when we are out and about.  People will ask him a question like his age or where does he go to school and I can just hear his force field shields going up.  He's just staring at them in stunned silence or even better, totally not looking at them at all and suddenly singing "Feliz Navidad".  Then I get the look of either "What's up with this kid?" or "Oh my god! Your kid is so rude."   Nope, there's nothing wrong with him. He's just autistic, blah, blah, blah. and I have to prompt the kiddo to respond.  I'll admit it. I'm so tired of having to do this.  All the freaking time. Sometimes though, we get lucky and he'll quote some Pixar movie.  If we're hanging with another family from the autism tribe, they usually can quote right back.  That's always cool when it happens but those moments are usually few and far between.

I wish your kiddo could talk too. I really do.  I don't wish for anyone to have a non verbal child.  It's even harder than what I have on my plate.  I know you are thinking "What I wouldn't give for my kid to drop an "f"  bomb?".  I would love for that to happen too!  We could sit together and laugh and bitch and moan and be all "OH MY GOD!! Why did he have to say that in Target????".  I want you to have that problem too.  Just realize it's not the perfect problem.  It's just a different one.

I have to wonder how a kiddo can perfectly mimic the voices from a YouTube clip but can't order a side of fries for himself at the diner.  Or when he can say it, it's done at such a whisper that no one can hear it and they ask again what he wants.  He then gets so upset that they didn't hear him and he got it wrong that he doesn't say anything at all.  I have to wonder how in the world he will manage at all when I am not there to help.

Then there is the fun of telling him "No" to when he does make his needs known.  We badger the living daylights out of him to "use his words" and when he finally does, he doesn't get what he asked for.  This has confused him to no end.  I feel terrible when this happens because I know it was a struggle for him to get those words out.  There I go, telling him "NOPE".  I know this has to do a number on his head.

None of this is easy and no one has it better than you. That's what I have to try to remember.  Everyone has plenty on their plate and it's not always what they ordered.





21 comments:

  1. Everyone has plenty on their plate and it's not always what they ordered. I love that line! I'm feeling so overwhelmed these days and last night I finally allowed myself to break down and cry about it. I didn't order what is on my plate but it's mine and I'm going to deal with it somehow, just like everyone else.
    Sometimes when my son is stuttering trying to get a simple sentence out and he repeats one word 20 times it makes me want to scream. So I get it, yes we are lucky that our kids our verbal but that doesn't make it easy. Easier? Of course.

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  2. When my son finally started talking it was all scripted. My family would say, "yippe, he is finally talking." They had no idea the sentence he just said was from the last video he watched. It was a scary time. He could have easily got stuck there, so many kids do. I think I was worried more during that time then when he couldn't talk. It reminded me of when my mom was coming out of a coma. We didn't know where she would plateau. Each step in the process was equally scary, but different. Each step brought its own set of worries. We were lucky, my son can now communicate with us. I don't know if it was luck or all the therapies but something clicked with him and he let us know how he feels and what he needs. A whole new set of challenges :)

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  3. My kid has switched to Russian. I have no idea why. We are not Russians. He found some Russian cartoon on the interwebs and now it's Russian central in our house.

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    1. It is an interesting language.

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    2. My Girl scripts in Russian too... totally freaks out the neighbors! ��

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    3. Well, mine does Russian also.Now I'm starting to think there might be something about Russian that is very attractive for them...

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    4. We get Chinese or Spanish but it is still scripting.

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  4. I have the best and worst of both worlds! One who is completely non-verbal, and one who is an echolalic demon who loves to recite Zac Browser videos. Oh, and he also has picked up a few choice curse words. I have no idea where that came from! ;) And it's amazing that within the space of 10 minutes, I will think, "God, I wish you could talk! Say anything!" about one and "Why did I ever wish for him to talk?" about the other after I'd heard the same line for the 300th time that day. We just roll with it, baby!

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  5. You are singing my song. Here's a little post I wrote on the topic a while back: http://mysideoftypical.blogspot.com/2013/03/careful-what-you-wish-for.html

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  6. That's the story of our life. Kinda like "no I won't put my damn shoes on ". Umm... Good use of your words. So yeah I get.

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  7. So, so true. People often tell me that I am "lucky" that Ashlyn is so high functioning. Yes, because then people can call security on us when she has the language to say exactly what she shouldn't during an epic meltdown in public. There's no perfect form of autism that I know of.

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    1. There's also no perfect form of human existence that I know of.

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  8. I feel like the more they learn to blend in the more vulnerable they are because teachers and caregivers overestimate their abilities and underestimate the level of care they really need. And the harder it is to explain/describe to bystanders and casual friends when they aren't around long enough to see further than the surface scripted behavior.

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  9. So true! Verbal and communication are two very different things

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  10. I am autistic and able to use language to suit my intended purpose (usually), do not engage in violent behavior unless it's self defense (have never been in a self-defense situation), and haven't had a meltdown lately (huge achievement). There's always someone who says that I'm so lucky to be able to speak for myself, play a musical instrument (flute), take honors classes, etc. etc. However, you don't see the anxiety or self-consciousness from finishing last. You don't see the determination my parents have to enable me to do these things. You don't see how I perceive timed tests as a death sentence. You don't see how I internally compare myself to others doing the same thing because I have a debilitating fear of failure. High-functioning world is hard too and I hope more people understand.

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  11. When I'm blogging, or even just reflecting on the day-to-day, I sometimes feel guilty for struggling because I know there are families that have a harder time than I do. And there are also some that have an easier time. My son is only three, and is currently nonverbal. I'm learning that all of our experiences are valuable to share. I've reflected a lot reading this post, and I love your blog!

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  12. Autistic young adult here... generally very verbal, enough so that I sometimes fake people out and they don't believe (even when we tell them) they're missing so much of ME because the words I say are a mask that's realistic enough to make you think they're the real deal, the whole deal, all there is. They don't want to listen to my typed words, only my voice, but I hate it because the things I talk about most are honestly NOT things I spend hardly any time thinking about. They're just the topics I know I can navigate, the old faithfuls that I know I can rely on when talking real-time with another person. I'll often have the same conversation multiple times a day with different people because... well, it worked the first time, so... but it's boring.

    https://autisticspeaks.wordpress.com/2015/10/19/the-what-versus-the-who/

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  13. I think that when your child has any kind of disability or issue, this can be a really emotionally charged situation. Every child's situation is different and it can be hard for a parent to accept what is going on. I think the best thing we can do is make sure our own child is receiving the attention and help needed and only wish the best for others in similar situations.

    Brendon Hudgins @ Medcare Pediatric Group

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  14. I feel you mama! My Kiddo is younger, and there's still a lot to hope for and we do, but we do get the "at least he talks!" from a lot of the families at his center. What they don't know is that at 2.5 years old, his first speech therapist told us to be prepared for a non verbal child. At 3, I'd still not heard him call me mama, and at 3.5, we still couldn't get more than 3 words out at a time. Now at 4.5, he can order his own ham and cheese sandwich, sweet tea, and fries, but that road is long, we still have a ways to go, and it is just a different problem, not always better.

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  15. This hit so home. Our 6.5 year old son is so "high-functioning" that he even had his psychologist wondering if he had been misdiagnosed, then BAM! There it was.. excessive scripting and obsessive behavior over finishing a game or having to tell us about something on a cartoon. God forbid, you try to interrupt him. Or when he starts telling typical peers that he's smarter than them. He is, but you can't say that to your classmates. Being a mom of a verbal Aspie can be a blessing, I know. But the black and white world...he sees no gray and his communication skills show it. I'm afraid this this world he lives in is going to get him in big trouble one day.

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