xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: This is what I hate about autism

Wednesday, March 2, 2011

This is what I hate about autism

Well, actually, there are a lot of things that I hate about autism, but many of them are things that I find unfair in the general sense and don't necessarily impact our lives (did you read yesterday's Dive Bar post? That's a good example) THIS is what I hate about autism and how it effects my child and our house.

I picked the boys up from school today and Child 1 wasn't talking. This isn't necessarily unusual, but I just had a feeling that something was up. I asked him, in the car, how he was and he just shook his head. Child 2, also, asked him how he was, but was much pushier about it than I was (that's what he does, you see).

"Bart, are you okay?"

silence

"How was your day today?"

silence

"Because you look sad."

silence

"Now you're making me sad..."

We got home, got ourselves situated, and I sat down in front of him and asked again, with eye contact this time. "Are you okay?" I said. He just shook his head again. "How was your day today?" I asked. He said "I guess my day was okay" and then he put his head down on his hands which were on the desk in front of him.

I waited, and then asked again. "Tell me what happened today."

"Can you please go away now?" he asked. This was my indicator that question time was over. At least I got "an okay day" out of him, rather than just the usual "good."

So, I have no idea. And I likely never will know. And it's not because he doesn't want to talk about it, or I'm being too pushy about it, or whatever other reason you could think of; it's because he can't tell me. He doesn't have the expressive language skills to take what's in his head and put it into words, and instead of trying, he just tells me to go away. And I don't push him because I don't want to, but also I know that it will be a futile effort.

So, he spent the rest of the day being incredibly frustrated and sad about things, and I never found out why. So, fuck you, autism.

And now, if you'll excuse me, I have a tangent to go off on.....

We had an IEP meeting yesterday. Three fucking hours. I'm always so amazed at how many people are involved in the education of this one little boy; there were seven of us in there. All women, of course; have you ever seen a man in any of these things? Unless his dad was there, maybe; although last year his teacher was a man. It sure would be nice to get more men in his life. But I digress..... I'm also always so amazed at how much fucking paperwork is involved in the education of this one little boy. Everybody has a report, and there are multiple copies of each one; paper everywhere! And I've been given so many fucking copies of those Parents Rights now it's just become annoying. I know it's a necessary formality, but still. Save your paper, man; give them to somebody who doesn't already know their rights.

Anyway, much of the meeting was spent in discussing his "academic weaknesses," of which there are many, but in particular, his terrible, horrible, no good, really bad reading comprehension. He can read every word perfectly! But ask him what he just read and he has no clue. I explained that this isn't because he didn't understand what he just read, it's because he's unable to pull the words out of his head and give them to you. It's the exact same thing that makes him unable to tell me what happened in his day that makes him sad. It's not that he doesn't know, it's that he can't say it.

These guys have it covered, though. I'm very impressed at our team this year, I've mentioned it here before. These guys are totally on top of this shit, they're motivated, they care, they're interested and best of all they all know him. They're not just guessing about how one might go about educating a child with autism, they actually know him and know him well and are able to "modify the curriculum," as they say, so that his Education Plan is actually Individualized. Have I mentioned how impressed I am? It's pretty rare to not only not have to kick and fight and scream for every minute of services, but to have a team that is so on top of things, and so good, and so caring, it's really, really awesome.

I had a lot more to say but it's been a long day and I've run out of steam.  Maybe I'll return tomorrow to finish this. Or, maybe I won't.

Thanks for stopping by! *wave*



Comments (53)

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I'm glad you have a team that is working with and for you...let's just say I'm a little brusied from my school interactions. We're going through the same thing here--he doesn't talk, now instead he barks, loudly. Great. I know he's hurting but he can't get it out, the words, the meanings--he's simply not there. I have to become sherlock fucking holmes to find out what happend and it could be something small as being cut off in the line at school...sigh.
1 reply · active less than 1 minute ago
Yeah, I hate that part too. My bird can't tell me shit. When I ask about her day, she tells me what age ate (although she knows I always ask that, too). But I never get much of a clue in the feelings arena. The worst is when she's in meltdown mode and can't tell me why. Saddest shit ever. For both of us. And this kid is verbal. Just not functionally verbal, I guess. Fuck. I'm pissed now. And sad. What to go, Jill, making me all pissed and shit!
1 reply · active 734 weeks ago
You are a great advocate for your child - so when you are thro being pissed at everyone - give yourself a big pat of the back ;)
1 reply · active 734 weeks ago
Hi! Long time reader, first time commenter here...

I am a special education teacher and you made me laugh a little at that stupid Parent's Rights booklet. We joke with parents at IEP meetings all the time that they could probably recite that back to us without even looking at it! I teach high school and majority of my students have had IEP's since elementary school, so you can imagine their annoyance with receiving the booklet... again!
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1 reply · active 734 weeks ago
Mama you're f'n awesome so despite all the shit and sludge of the process, you have gotten for your dear one the team, support, and education that he needs. That's you baby!
Now, I'm in awe (& a bit envious) of your educational support team and a three hour IEP meeting. We're only slotted for an hour and THAT pissed me off! My little guy seems to display the same issues with expressive language and is being reassesed as we speak. A pray they discover something that will enable him to get the services he desperately needs. His diagnosis in bipolar (of which I have no doubt) but there is so much more to that. I suspect SPD sensory processing disorder, and likely Asbergers. My brother (now age 28) has Aspergers, and there is an alphabet soup of mental health diag. in my family. I guess the cards were stacked. Sucks!
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1 reply · active 734 weeks ago
I hate when they can't tell you what's on their mind. Hope he has a better day. Also, it's awesome that you have a great team. I wish I could say the same!
1 reply · active 734 weeks ago
Hey, Jillsmo. I want to second Melody: You have gotten your son what he needs. You FUCKING ROCK!! I don't know how you did it, how you got them to see Bart as a PERSON, but you did it. God bless you.

You are an inspiration. No, seriously. Stop snorting. I am serious. No pressure, but not only are you making a difference for your kids, your school district and other kids who come after the Bart Man, you are making a difference to your readers, too.

Keep fighting the good fight, Mama!
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1 reply · active 734 weeks ago
Don't have an autistic child but I do have an IEP plan child. Two of them actually. Our middle school sucks at IEP meetings. They are ill informed, poor planners who's main concern is the politics of the IEP. Meaning paperwork deadlines. And yes, I have men in my meetings. You aren't missing much. they are no help ether.
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1 reply · active 734 weeks ago
Katie has a feelings chart that she fills out everyday, to let me know how she was during each time period. Although, they do it at the end of the day and like any kid remembers what happened in the morning...duh. Better than nothing, though, I guess, and at least I know what she did during the day to ask more pointed questions. I am glad you have a good team. I wish we could have a 3hr team meeting. We get close to that one hour mark and people leave, regardless of where we are. Some leave even sooner. Katie's ST this year is a guy. Not at all impressed. I am not sure men are cut out for this kind of work frankly.

And, WTF, I was just interrupted by the allergist calling saying Ben is allergic to LATEX. I am NOT raising no grandkids, Mr Allergic to Condoms. Sure, he's only 4 now, but I like to think ahead. Just had to add that in here at the end.
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1 reply · active 734 weeks ago
Hi! Another first-time commenter here.

You perfectly captured the frustration of not being able to understand what is going on in our child's head. Your funny posts brighten my day, but the poignant ones like these are the ones that get to me the most. Thanks!
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1 reply · active 734 weeks ago
The only man I've ever seen at an IEP has been the interpreter. And THREE HOURS?? I'd wanna fucking stab someone.

Suck that he can't say what's making him sad. Autism is a fucking jerk.
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1 reply · active 734 weeks ago
Virtual hugs to Child One and Child 2. (Bart and, crap, I forgot, what was Child 2's name again?) Because on days like this, being Child 2 can suck, too. Reading a story and not being able to tell anyone what it's about, being angry and unable to explain why, yeah, that's Goldilocks. I usually don't know why he's angry unless I happened to see the event that triggered his anger, and knowing doesn't generally help, anyway. Because talking about it just makes him angrier. His "calm down" button is broken. Hugs, bouncing on the trampoline, long walks, a small vanilla shake at Burger King--these are the things that restore his balance and get him functioning again.

We are preparing to transition from home school to the public high school in September. I look forward to IEP meetings with fear and trembling.
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1 reply · active 734 weeks ago
lady--yer awesome, and Autism can suck it.

i say we go down to the beach with a bottle and all those damn guides (i've got a handful myself) and start a bonfire.
1 reply · active 734 weeks ago
I'm glad to hear the IEP went well! That's very hard, having a child with poor expressive skills. It makes it really hard! Hugs!
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1 reply · active less than 1 minute ago
My daughter has the same problem with retrieval. It's hugely frustrating. But, as I read this post, I also think, "Man, you are some awesome Mom."
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1 reply · active 734 weeks ago
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AutismSupermom · 734 weeks ago

X surprisingly has 3 guys on his team this year! It's good to have a great team. I hate when I know my boy has had a bad day and can't tell me anything other than thumbs up or down on his day. I think he is trying but it breaks my heart i cant understand his rantings! Those are the Fuck You Autism kinda days.
1 reply · active less than 1 minute ago
This post really struck a chord with me. I know my little guy's a lot younger, but he only just started speaking a couple of months ago. There's not that much choice in our area for schools and stuff like that and he doesn't have an IEP team yet. (I came across the term for the first time last night on a different blog last night and I had to google it). The nursery he goes to doesn't really impress me, but it's meant to be the best in our area. Sometimes he comes home with marks on his body, (just little ones, but enough to make me wonder) and he also came home saying "sorry sir" (repeatedly) so I started freaking out about where he learned it. It def wasn't with us and there's meant to be only women at his nursery, I know for a fact there's not a single man employed there. So where did he learn it? I know it's probably stupid and uber paranoid of me (Hubs thinks so) but it really does make me wonder. And he can't tell me anything himself.

You are an incredible mom, and super talented as well (I fucking love your posts, man!) the whole way that you approach life and adversity is inspirational and your kids are learning from that every. single. day. They're really lucky to have you as a mom and I hope you know it. It's also really good you guys have such a solid team behind you. **yay Jillsmo & co**
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2 replies · active 734 weeks ago
Geez I wish I could come over with a bottle of something, give you hug and a good laugh. When someone with your spririt is so down in the dumps you know things are bad. Really friggin bad.
I was wondering if tour son draws at all? It might be a good way for him to vent feelings he cannot express verbally, and might give you some insight? There's plenty of books around on Art therapy for kids I reckon. Check Amazon on line if you think it might help.
x
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1 reply · active 734 weeks ago
I wish I could give Bart a big hug and make it all better!!! There was a great article in an autism magazine I read recently about the way we approach our kids to get them to talk about what happened during their day. What I got out of it was that it advocated not asking broad questions (like what did you do? or what happened today?) because it's too hard and we should ask questions with short one word or yes/no to draw it out. Maybe this can help?

But the good stuff is that you have a great IEP team that care. There are a couple men in my IEP (one is fantastic - the other is an idiot) and WTF about the Parent rights?! I have only had 2 IEPs and have received like 12 copies of that thing!
1 reply · active 734 weeks ago
As one of your resident autists, I want to second the suggestions you've gotten about Bart using some visual means with which to communicate how he's feeling and what's happened on any particular day. I seem to remember that he can draw, so that might be very helpful, so long as you are able to interpret the visuals back into words for yourself.

Verbal language, in general, is very difficult for me. All of my hearing is visual, so I have to go through a lot of translation on both the receiving and expressing ends. It's hard to explain it to someone for whom verbal communication is easy, but let's just say that it's pretty constant hard work.

So I wonder how much of Bart's difficulty is retrieval, and how much is the exhaustion of having been in a sound-rich, verbal environment all day. It may be that he's just verbal- and auditory-processed out by the time he gets home to you. Of course, the result is the same, which doesn't make anything any easier for either of you.

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2 replies · active 734 weeks ago
I am SO glad you have a good team. I hear from so many families who are fighting so hard to get what they can.

Do you have an SLP on his team for the language issues? I have to assume you do. But...even with work and practice there are still those times when the thoughts and the experiences bottleneck behind a language system that is still so so slender.

Love and good thoughts.

And chocolate. Cause that NEVER hurts. ;)
1 reply · active less than 1 minute ago
Oh I am so with you. My daughter comes home mad at the world but she can never tell me why. She can tell me what she had for lunch and that her eraser didn't work in 3rd hour and about her locker combination but nothing about what is actually make her fall completely apart when she walks in the door.
We have an amazing team too and I count my blessings that they know her so well and I am so comfortable having her in their care each day. You are a strong, tough Momma and your son has gotten to where he is because of you. I'm sorry that he can't give you a better look into his world. The one that we all, as their parents, deserve. Sorry.
Hugs to you and pthhhhhhhttt (is that how you spit in type?) to autism.
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One of my parents took all of the rights booklets she'd been given and made origami animals out of them and brought them to the last meeting of the year.

And here's to one day soon that Bart will be able to tell you what he can't say now.
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I HATE those parent rights booklets. I have two boys who have multiple IEP meetings each year, so I seriously have a gazillion of those. Last time I said, "Please don't give that to me...I'll sign that you did...but I have way too many." I'm so glad you have a good team, though. It makes such a difference, doesn't it?
I am autistic and if someone asks me at the end of the day how I am it is sometimes difficult to say anything meaningful because I am in sensory overload and overstimulated. And I can easily "lose it". So I try to get away from people so that I don't cause offence.
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