Saturday, June 25, 2011

SNSS: Special to the Fourth Power

Today's very special SNSS guest is a mom with a very special family. She is the stark. raving. mad. mommy (SRMM). She writes at her eponymous blog, whose tag line is: Losing my mind, one child at a time.

The SRMM has four children, and... they ALL have special needs. But, just to keep her on her toes, they are all different from each other. 

There are her twin daughters, oldest at 10, one with ADHD, one with severe anxiety. Then there is her brilliant but anxious seven year old daughter, and finally, her five year old son who is on the spectrum with Aspergers.

The SRMM herself? Has ADD, which she has recently begun to address, much to the improvement of her life.

And the most amazing thing is that this is a very, very funny blog. The SRMM sometimes rants about the injustices that any special needs parent experiences, but she also rants about everything else that freaks her out or pisses her off in a most entertaining way. 

She also enjoys and celebrates her children, revels in the wonderfulness of their specialness, even as she recognizes the challenges of their lives.

For her SNSS post, The SRMM has done a unique and brilliant thing: interviewed her four very bright children about their own situation, asked them to think about and share their thoughts on their siblings. Read this amazing post now, here:


Special to the Fourth Power - by stark. raving. mad. mommy.

I have four kids, each with their own special needs.

Little Dude, who is five, was diagnosed with Asperger Syndrome about a year ago. 

The Peanut Butter Kid is seven. She has some anxiety issues, but her biggest special need is that she's crazy smart. We just put in a Gifted IEP for her. 

My twin daughters are ten. Cookie has severe anxiety. Besides weekly therapy, she's on three different prescription psychiatric medications. She had a 504 for her anxiety, but now those accommodations have been folded into a Gifted IEP. 

Her twin, the Pork Lo Maniac, has ADHD and some language processing issues. She also gets weekly therapy, and is on medication for both ADHD and anxiety. She currently has a 504 for her ADHD, but we're working toward an IEP to help her with the language processing.

Yeah ... I've got my hands full. But you know what? My kids do, too.

My husband and I do our darndest to give each of our kids as much individual attention as we can. But still, all these issues obviously impact each of our kids in different ways.

For my contribution to Special Needs Sibling Saturdays, I decided to interview each of my kids about how they see their siblings, and how they affect each other.

Little Dude, age 5.  Has: Asperger Syndrome, Sensory Processing Disorder.

What's hard about having a sister with ADHD?  She doesn't let me do much stuff.  It's stressful, and also sometimes I get really upset with her because she wrestles with me and her moves are too hard and I can't win.  What about when she's having a meltdown?  Yeah, that.  But that's all the problems.

What about Cookie's anxiety?  Is it hard for you when she's sad or stressed out?  I usually kind of tickle her.  Or do a silly face.

Can you tell me something great about each of your sisters?  Something great about Cookie is that she makes me happy.  The Pork Lo Maniac, a great thing about her is that she's Dad's padawan.  That way I have more people to wrestle with.  Something great about the Peanut Butter Kid is that she is great about doing crazy stuff.  Like laughing really hard and laughing into a pillow because it's so loud.  It doesn't even hurt my ears when I'm right next to her and she laughs.

What do you think it's like for your sisters when you get really stressed and have a meltdown?  I think they get upset, because they can't fix the problem.

The Peanut Butter Kid, age 7.  Has: anxiety, Gifted IEP.

What's hard about having a sister with ADHD (and language processing issues)?  When she doesn't get what I'm saying, when I'm being sarcastic.  It's hard to get her to understand me, about each thing I say.  If she's too busy and she can't hear me, somtimes I start to freak out a little, because it's really hard to get her to focus on what I'm saying.

What's fun or awesome about having a sister with ADHD?  It's awesome that she has ADHD, because if she didn't, she wouldn't be as much fun.  She makes up funny jokes, and sometimes they don't even make any sense, but they're funny.  She talks about weird stuff with me, like talking about poop, and then we laugh so hard that Cookie calls us "broken."

What's hard about having a sister with anxiety?  When she's stressed with me because I did something wrong, I try to make her feel better, because then I feel guilty and it turns into this whole thing.  If it's just about homework, when she's done I try to leave her alone, or cheer her up.

What's great about her anxiety?  She understands me, because she gets stressed like me.  She's not perfect, and I like that, because she's my sister, and I don't want to feel so different.

What's hard about having a little brother on the spectrum?  When he melts down and freaks out, it's hard to get him to understand, and sometimes he doesn't pay attention because he's so focused on something else.

What's great about his Asperger? He loves Star Wars and he loves me very much.  He's so fun.

What do you think it's like for your siblings when you're feeling anxious?  I think it's hard for them to understand me, and to feel the way I do.  It think it's hard for them.  Sometimes they try to leave me alone.  I guess it's stressful for them.

What about when you're working on school stuff that your older sisters are working on, like multiplication?  Sometimes when I accidentally say stuff out loud, about me working on multiplication or something, that can hurt someone's feelings. It can be a little offensive.  I try not to talk about that.  I can talk about it with you and Daddy instead.

The Pork Lo Maniac, age 10.  Has: ADHD, anxiety, language processing issues.

What's hard about having a little brother with Asperger Syndrome?  It's hard to ask him a question like, "can you please lower your voice?" or "can you please stop that?" without him getting upset.  When he has a meltdown, he might scream at me, and sometimes it'll be because of one little thing.  When I want him to stop doing something, I know that he'll get upset if I ask him, so then I have to just listen to his really loud voice.

What's awesome about his Asperger Syndrome?  Sometimes, how he needs to express his feelings at the end of the day is wrestling, which I love to do.  Sometimes I just need to wrestle.  It's perfect when we can just both wrestle together.

Both of your sisters have anxiety issues. What's hard about their anxiety for you?   Sometimes when we're having a conversation, and I don't understand what one of them is saying, or I don't really know what they're talking about, or I take it literally, then they do this (shows shaking arms), and I can't really help it that I don't understand.

Also, since Cookie has anxiety, she needs that medicine Clonidine, so at night it makes her think it's later than it really is.  She gets more tired, and keeps asking me if we can turn off the lights, and it's really not that late.  I just want to keep reading.  

You have some anxiety too. What's different about your anxiety than theirs?  I get anxious about mostly about getting stuff done.  They start worrying that it's late, or we're going to be late, and I'll probably never worry as much as they do.  I guess sometimes when I can't hear somebody or I don't know what they're saying, and they keep having to repeat it over and over again, and I still can't understand them, it's just too hard, and I don't know what to do.

I don't think they have that anxiety.  But they might.  When I keep asking them a question, and they don't know what I'm saying, because I've already had the conversation in my head and I just use pronouns and they don't know, that might make them feel anxious.  I see them flapping their hands because they're frustrated.  And then that makes me feel bad because I can't help that.

Do you think them having anxiety makes it easier for them to understand what you're going through?  No.  They just can't understand.

Is there anything great about the way they are, or their anxiety?  I guess it is good that even when it isn't that late, and Cookie says she thinks it's late and we should turn off the lights, but I just started reading a minute ago, then that reminds me that at some point I need to turn off the light.

Is it hard when the Peanut Butter Kid is doing really advanced schoolwork?  Yeah, sometimes that bothers me.  I know I'm smart, but I'm the only one who hasn't been in the gifted program.  Sometimes it upsets me when everyone else is so smart, and I'm smart, but I'm the one who struggles with the most stuff in school.  And they're so smart, I can't understand what their stuff even is in school.  It seems easier for them.

I'm the one who probably won't be in the gifted program.  Sometimes I feel like people aren't as proud of me.  In the spelling bee, I was the fourth one out.  Everyone was so proud of [our friend who won].  At the spelling bee, they couldn't see how good of a speller I really am.  I think you and Daddy are proud of me, but at school, I don't feel like they're proud of me, of how hard I work.

Tell me something great about your sisters.  Cookie's really crafty, and she has really good ideas that are so good it's hard not to steal that idea.  It's fun playing with The Peanut Butter Kid, just her and me.  I think she's really good at understanding me when we play one-on-one.

What do you think is hard for your siblings about your ADHD, or your language processing issues?  It's probably hard when I have a conversation in my head, and then I just say "it" or something like that, and they have no idea what I'm saying.  I guess it's stressful for them when I get really frustrated.

It's probably hard for anybody when they're asking me a question, and I can't understand them, or when they can't understand me.  I know that my ADHD is fun sometimes, because the PBK said one time that she's glad I have ADHD, because if I didn't, it wouldn't be as fun for her, but I don't really understand that.
Cookie, age 10.  Has: severe anxiety, Gifted IEP.

Did you know something was different about Little Dude before we told you?  Yeah. A little before that, there was something a little off. Something just didn't seem like normal. He was different from other kids his age. When we would go to friends' houses, he didn't play with other kids as much as he played with Legos and stuff.

What's hard about having a little brother with Asperger Syndrome?  Sometimes he's very stubborn.  And he gets so obsessed with one thing, it's hard for me to want to play with him. Sometimes I want a break, and he doesn't really seem to understand that. At the dinner table, things can get a little weird, and I kind of get tired of him talking about butt cheeks at the table. It's not very pleasant.

What's awesome about having a little brother with Asperger Syndrome? Sometimes he can kind of help us with his homework. When he was obsessed with multiplication, he would sing, "six times eight is forty-eight." Sometimes it's fun playing with him, because he has awesome ideas about what to pretend. When we're playing Lego Star Wars or Lego Indiana Jones, he knows exactly what to do and where everything is.  On Batman, he can even remember the bad guys' actual names.

What's hard about having a twin sister with ADHD and language processing issues?  Sometimes, she doesn't really understand, somehow. She takes so many things literally. Sometimes it's hard to talk to her at the end of the day, because by the end of the day, she's mumbling, and she gets mad. She'll say, "I said, ..." Every little thing seems to be so big to her.

Do you know why she's different at the end of the day? Probably because she had a tough day dealing with her ADHD. And I know her Adderall wears off by then.

Is there anything awesome or fun about her ADHD? Despite how she doesn't get sarcasm, she has a really good sense of humor. She's funny sometimes, but sometimes she doesn't get how she's being funny. Other times, she does get it. But sometimes when she's humming little tunes and doesn't hear us talking, it's kind of funny. Also, she can find pretty much anything in the house, because of her memory.

If she's being really ADHD-ish, how does it affect you? It really depends on how I'm feeling, and what she's doing. Sometimes it's stressful. Sometimes it's hilarious.

Do you feel like you get left out, like Daddy and I spend more time or energy on Little Dude or the Pork Lo Maniac? Sometimes. Because sometimes I'm trying to talk, and somebody has a freak-out in the middle of the conversation. It's not very fair to me. And the Pork Lo Maniac always needs things repeated, so it's like I've had the whole conversation over and over.

How do you think it's hard for your siblings to have a sister with anxiety? I never really thought about their side, of what they deal with too much, in terms of me. At the end of the day, if I've forgot my homework or something, I guess it must be hard for them, to hear me getting so upset. Kind of like how it's hard for me to hear them get so upset.

I know it's especially hard for the Pork Lo Maniac. One time, the PBK offered to give me her slinky because mine was all bent and I didn't like it any more, and the Pork Lo Maniac was like, "how come you always get what you want?" It made me feel bad.

I know Little Dude doesn't like waiting for an hour when I'm in therapy. But I'm pretty sure my sisters are fine because they have toys in the waiting room. But I don't know, because I'm not there. I'm in therapy.

I'm grateful to Varda for asking me to contribute to the Special Needs Sibling Saturdays series.  Interviewing the kids, and then reading the responses as a family, really gave us the opportunity to focus on how we function as a unit. 

Clearly, the kids hadn't previously given much thought to how their quirks affect other people.  Self-awareness is a long, hard road, and I'm glad we could start them on that path in a gentle, supportive way.


I love how articulate and thoughtful all of her children have been. It was a brilliant idea to interview them, and that SRM family used it as a source of connection and communication, to help set the kids on a path of self-awareness? Beautiful.

The fact that, in spite of their very differing needs, it is clear that this family still functions as a unit is a testament to what an amazing parent the SRM Mommy is. Even if she has written a post confessing that she sucks? Don't believe it.

We all get overwhelmed, no special needs parent (let alone one x 4) can do it all. She is way wonderful, trust me. Any mom who LOVES summer break? Wonderful. And that she faces all these challenges with her kids yet clearly has kept her sense of humor? Amazing.

So now that you have read this lovely post here? You will surely want to go read more at stark. raving. mad. mommy. Her absolute honesty, discussing her own issues, openly talking about medication and her kids, has been inspiring and helpful to so many.

Besides all the wonderful posts I've linked to in the introduction and above? Don't miss this fabulous one, about how to make special needs "cool" (by changing an acronym to "Jedi"), or this funny one about the trials of doing math homework with her twin daughters, or try this sweet and funny one, about the advantages/disadvantages of autism.

Or, for something completely different (the funny stuff that has nothing to do with special needs) read the post that put SRMM "on the map" for a lot of people: a hysterical treatise on those highly annoying childrens cartoons: Dear Dora, We Need To Talk.

Finally? You should follow her on Twitter, and go "like" her on her Facebook page, where she is just as outspoken and delightfully irreverent as she is on her blog.

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