I can't believe it's taken me more than a week to write about what happened at my son's school.
Well, it was been a doozy of a week. (Peaches turned four, Spring Break began, my mother flew in from the East Coast, I was sick, I took both kids to the dentist for the first time and found Peaches had two cavities, went to Disney Land, had an egg hunt, and some Schmockity ick hit the fan... )
Still, J and I giving a talk to Rooster's kindergarten class about autism felt monumental.
Just as we'd been following the uplifting and captivating story of MOM-NOS meeting with Bud's sweet and supportive class during lunch, we got word that Rooster had made some enemies among the kindergarteners and their parents. A few moms told their children not to play with our boy, and at least one wanted him out of the classroom.
Fortunately, Roo has a good teacher and an amazing inclusion specialist, both of whom are also lawyers. They made it clear that bullying and discrimination would not be tolerated in the classroom. I asked if perhaps I could come lead some parent education, and the kindergarten teacher through her hands up, telling me she considered it somewhat useless to try to reach the parents. "I gave up on teaching the parents," she said. "Every year one or two of them try to separate their child from others based on race or religion, so if they still do that in this day and age and in this city, I'm just going to focus on teaching the children. With the kids I still have hope. But none of this nonsense happens in the classroom. Rooster is a part of things just fine inside the classroom."
So, we have our work cut out for us.
We still plan to reach out to the parents.
But we started with the students.
It was the day before Spring Break - a Friday - first thing in the morning, and we met with an adorable group of five- and six-year-olds.
I want to tell you all about it, want to include the little speech we'd prepared, share with you some of the cute comments... but the truth is, I've started this post six times in as many days. It began with a sentence amazed it had been three days, then almost a week, then a week, then more than a week...
I think that the drama in kindergarten might have been the start of me unravelling once again. The talk went great, but prepping for it and giving it took a lot out of me, and there wasn't exactly enough of me to start with, if you know what I mean. It feels like it was years ago. Everything just keeps piling on and on and on, and I'm feeling defeated. In May Rooster will turn six. My current project is (supposed to be) planning an amazing birthday party to which I can lure his class. This is not very us-like; it feels like a SHOULD but it's not how we roll. And I'm not really ready to roll anyway. I'm more cranky, miserable, ungrateful, exhausted and blech than usual. So this is not much of post. It's more unravelling....
Wednesday, March 31, 2010
Tuesday, March 30, 2010
Guest Post: J Speaks Out for Good
Below is a guest post from J, my husband and mirror opposite. We have nothing but love and family in common (though I guess that is plenty). If you want a quick character sketch of J, I can sum him up as deliberate, artistic, reserved, patient, calm, unflappable, and at peace with the world. No, I do not know how he ended up with me, but somehow we work just right. We keep each other out of trouble most of the time. We both love words and love writing, though we write completely different things, about different kinds of things, and in different ways. Recently, we both felt compelled to speak up on the same topic, though. We've wandered around for several days, grieving, muttering, "Smockety, schmockity..." We both needed to say something, and wrestled with draft after draft, sometimes written all in our heads. We both felt like we'd witnessed the equivalent of gang violence in the blogosphere, and inaction was not an option, inaction equalled complicity. Well, maybe that last part is how I would describe it; I don't want to put words in J's mouth. Instead, I'll just give you his words in by way of this guest post -- an open letter to a blogger who unacceptably and unapologetically attacked a member of our community.
Connie,
When I decided to write an open letter to you I’ll admit that what I really wanted to do was to write a letter about you for people in the autism community to read. But I think you’ve endured enough vitriol. I know you’ve heard the message. In the end all I want is for you and others to appreciate what our kids go through and how heroically they’re fighting. I’d love to know that you feel a little compassion, that even though we can be a little disruptive, you know we deserve a place in our communities and a little dignity.
I’d like to offer you some measure of sympathy as well. We all make mistakes. We all come up short in our conduct. Hell, in my life I’ve uttered some things that I’m very thankful aren’t cached on Google’s servers. The fact is, your mistakes happened under the amplifying effects of the internet, and the scale of the response must feel pretty enormous.
Right now you’re not just Connie. People aren’t just mad at you for that post. You are the stand in in our minds for a million tsk-ing, intolerant, vicious attacks on us and our kids. You’ve just tapped into a bottomless pit of hurt and anger that’s been looking for some expression. While that’s a heavy load to bear, it also puts you in a position of great power, but you need to hurry.
Your story has gone viral in this community and the timing is ripe. Autism Awareness Month begins April 2nd and right or wrong, you’ve become a symbol of the need for awareness. One in every 106 kids are now being diagnosed with some form of Autism so this is big news. I’d wager that come Friday your story will be in the mainstream national press. Right now that headline is, “Woman Holds Bible, Mocks Autistic Girl.” And that whole “first recorded human flight” thing. That’s the kind of stuff that gets ratings and sells papers. I don’t think you want that.
You have a very short window to get ahead of this. Don’t clam up. Reach out. Make amends. There are plenty of great bloggers out there who would talk with you and answer any questions you have. Write what you’ve learned about what we go through. You have the floor. Speak out for us and turn this into something good. Make that headline, “Families of Autistic Children Find Ally in Unlikely Place.”
Signed,
J, Rooster's dad
Connie,
When I decided to write an open letter to you I’ll admit that what I really wanted to do was to write a letter about you for people in the autism community to read. But I think you’ve endured enough vitriol. I know you’ve heard the message. In the end all I want is for you and others to appreciate what our kids go through and how heroically they’re fighting. I’d love to know that you feel a little compassion, that even though we can be a little disruptive, you know we deserve a place in our communities and a little dignity.
I’d like to offer you some measure of sympathy as well. We all make mistakes. We all come up short in our conduct. Hell, in my life I’ve uttered some things that I’m very thankful aren’t cached on Google’s servers. The fact is, your mistakes happened under the amplifying effects of the internet, and the scale of the response must feel pretty enormous.
Right now you’re not just Connie. People aren’t just mad at you for that post. You are the stand in in our minds for a million tsk-ing, intolerant, vicious attacks on us and our kids. You’ve just tapped into a bottomless pit of hurt and anger that’s been looking for some expression. While that’s a heavy load to bear, it also puts you in a position of great power, but you need to hurry.
Your story has gone viral in this community and the timing is ripe. Autism Awareness Month begins April 2nd and right or wrong, you’ve become a symbol of the need for awareness. One in every 106 kids are now being diagnosed with some form of Autism so this is big news. I’d wager that come Friday your story will be in the mainstream national press. Right now that headline is, “Woman Holds Bible, Mocks Autistic Girl.” And that whole “first recorded human flight” thing. That’s the kind of stuff that gets ratings and sells papers. I don’t think you want that.
You have a very short window to get ahead of this. Don’t clam up. Reach out. Make amends. There are plenty of great bloggers out there who would talk with you and answer any questions you have. Write what you’ve learned about what we go through. You have the floor. Speak out for us and turn this into something good. Make that headline, “Families of Autistic Children Find Ally in Unlikely Place.”
Signed,
J, Rooster's dad
Monday, March 29, 2010
An Eye for an Eye
When I’m angry, I lose my voice; no, not in the sense that I go quiet, but I become completely inarticulate. In person, face-to-face, I stammer, stutter, turn the color of Kool-Aid. You can’t see that when I blog. Instead, I go AWOL.
I’ve spent several days trying to write in all kinds of different ways about the cruelty we’ve witnessed recently in the blogosphere. Really there are no words I can say, except perhaps to quote my son: "Aaaaaahhhhhhhh!" Yet I cannot sit silently by either. So the only thing I can think to do is to take a different voice that I hope comes across at least a little better than my own. In the spirit of point-of-view writing, like I used to do with my writing students, I am going to express my feelings through a grandmother in my imagination. I do not know the real grandmother nor do I know anything about her, and I can only hope she wouldn’t mind too much me using my imagination to express my feelings here about the horrible treatment she received at the hands of an ignorant blogger. Okay, me shutting up now, so that I can speak…
You can call me Grandma.
During a recent afternoon babysitting my granddaughter, I was reminded again how hard it is for my son and his wife to face bigotry, discrimination, and judgment every day. Although it was a very difficult day, and an emotional one for me, I remain grateful for what I learned, and even more grateful for all my precious children and grandchildren.
My granddaughter had to have yet another painful blood draw on the day I’m describing, and since both my son and daughter-in-law long ago used up their sick and vacation days and fear for their jobs if they continue to miss work, I volunteered to help out. Blood draws are never easy. I promised my granddaughter that after the lab work, she could choose something fun to do. Sweet girl that she is, she wanted email her brother, my grandson, now serving in the military, but her computer has some kind of virus. Could we go to the library to use computers, she asked? Well, I don’t know an email from Morse Code, and libraries can be tricky for our sweet girl, but grandma did say she could do whatever she chose, so that is how we found ourselves waiting to use public computers already in use, and how we came to be the objects of scorn and ridicule.
When my granddaughter and I got to the computers, some children were already playing video games. My granddaughter’s autism has a negative impact on her impulse control, and while 15 hours a week of ABA therapy for the last 18 months has given her a number of useful tools to deal with the stress of waiting her turn, it is still a struggle for her. I smile even now to picture how she tried her best to remember the coping mechanisms she’d learned while clearly feeling impatient and exhausted from her morning visit to the Children’s Hospital.
I could tell that the mother of the girls on the computer felt uncomfortable in the face of my granddaughter’s developmental challenges. Not that her challenges are anything to be ashamed of, but knowing that others feel uncomfortable around us makes it hard for me to make eye contact sometimes myself. I knew that to others, we looked awkward and loud and off-putting, but at the same time, my sweet grandchild had practiced and practiced and practiced being patient so much, I knew that she was doing her best to waiting to use the computer. She was perseverating on her own struggle with patience, repeating to the point of exhaustion, “I’m being very patient, grandma!” I know that helps her maintain her calm, pass the time, deal with the stimulation that is dysregulated through her nervous system, so I tried to support her as best I could by saying, “Yes, my love, you are being patient.”
I don’t know exactly how long the other girls had been playing video games when we arrived, but I admit my heart sank when I saw them there. Of course, they have every right to use the computers as much as anyone, but this is the thing: Everything is so hard for special needs children like my granddaughter, and sometimes you just wish something would go smoothly and easily. Sometimes you just wish for a break, a simple day. Sometimes after getting through the medical challenges our girl has and helping her navigate through the choppy seas of her day, you see healthy, typically developing young people who always have blue skies and calm waters, and you feel bone weary, a tad bit jealous, and a little frustrated. I put those other girls out of my mind – I had to – a focused on being the most supportive grandma I can be. I kept reassuring my girl that, yes, she was being very patient, and soon, it would be her turn, because experience has taught me that I could best help her that way.
Finally my granddaughter’s loose grip on control escaped her, and she approached one of the girls playing video games. “It’s my turn, it’s my turn!”
For a brief moment I imagined that perhaps I could hope for some compassion from the children, or perhaps their mother, who was, after all, reading the Bible. But do you ever get the feeling that some people choose their books just so that the title will be impressive to those around them? I hate to be judgmental, but I can’t say that The 90 Day Bible Speed Read or whatever it was really impressed me in the way that the woman seemed to hope it might, as she clearly pretended to read it to avoid dealing with the situation at the computers.
Again, I am a little ashamed of myself to make such a judgmental declaration, but moms who find a computer where they can plug their kids in to avoid having to teach or parent them themselves make we want to take a ball point pen and jab myself in the eye. Anyway, since I got no help from the mother and no compassion from her daughter, I simply did the best I could with what stamina I had left. Suffice it to say we managed, and my granddaughter eventually sent a beautiful, loving, supportive email t her brother in Iraq.
You’d think this would be the end of the story, except that today my daughter-in-law brought me this awful thing that had been written about us; the mother from the library said the most horrible, wrong things about my granddaughter and me.
For a moment, I wanted to hate that woman. No, to be honest, for a moment I did. I hated her. But then I remembered something important. I remembered that I once was the parent of three healthy, typical children, and I didn’t know about autism either. I didn’t know about neurologist appointments, IEPs, co-morbid conditions. I didn’t know about patience, and I didn’t know about my granddaughter. I was ignorant once, too. I had to learn too. And I didn’t want anyone to hate me for all that.
I tried to picture this bloggerwoman as someone’s daughter, someone’s granddaughter. When I do that, I can’t hate a person. I just can’t hate someone I can imagine playing in a sandbox.
So after I read what she wrote, I decided to just try to do for that blogger what I tried to do for my granddaughter at the library that day when she was struggling so hard to be patient: I tried to love her. Love isn’t easy. Autism isn’t easy. Patience isn’t easy. Life isn’t easy. But hatred is ugly. Hatred is what that woman wrote on her computer about my family. And hatred is unacceptable. I don’t want to be a part of hatred.
Besides, my mama used to say, “Kill ‘em with kindness.” So, mother from the library? Wherever you are? I want to tell you something. No matter how wrong, mean, and selfish you are, no matter what you write, my granddaughter and I forgive you. We hope you learn your lesson someday about autism, we hope eventually you and your insensitive friends learn how much people with special needs have to offer the world, but even if you are a very slow learner as you appear to be, we forgive you, because we’re patient like that. And, finally, thank you. Thank you for reminding me what amazing children I have raised, what a lucky mother-in-law I am, and how much I treasure all of my grandchildren.
I’ve spent several days trying to write in all kinds of different ways about the cruelty we’ve witnessed recently in the blogosphere. Really there are no words I can say, except perhaps to quote my son: "Aaaaaahhhhhhhh!" Yet I cannot sit silently by either. So the only thing I can think to do is to take a different voice that I hope comes across at least a little better than my own. In the spirit of point-of-view writing, like I used to do with my writing students, I am going to express my feelings through a grandmother in my imagination. I do not know the real grandmother nor do I know anything about her, and I can only hope she wouldn’t mind too much me using my imagination to express my feelings here about the horrible treatment she received at the hands of an ignorant blogger. Okay, me shutting up now, so that I can speak…
You can call me Grandma.
During a recent afternoon babysitting my granddaughter, I was reminded again how hard it is for my son and his wife to face bigotry, discrimination, and judgment every day. Although it was a very difficult day, and an emotional one for me, I remain grateful for what I learned, and even more grateful for all my precious children and grandchildren.
My granddaughter had to have yet another painful blood draw on the day I’m describing, and since both my son and daughter-in-law long ago used up their sick and vacation days and fear for their jobs if they continue to miss work, I volunteered to help out. Blood draws are never easy. I promised my granddaughter that after the lab work, she could choose something fun to do. Sweet girl that she is, she wanted email her brother, my grandson, now serving in the military, but her computer has some kind of virus. Could we go to the library to use computers, she asked? Well, I don’t know an email from Morse Code, and libraries can be tricky for our sweet girl, but grandma did say she could do whatever she chose, so that is how we found ourselves waiting to use public computers already in use, and how we came to be the objects of scorn and ridicule.
When my granddaughter and I got to the computers, some children were already playing video games. My granddaughter’s autism has a negative impact on her impulse control, and while 15 hours a week of ABA therapy for the last 18 months has given her a number of useful tools to deal with the stress of waiting her turn, it is still a struggle for her. I smile even now to picture how she tried her best to remember the coping mechanisms she’d learned while clearly feeling impatient and exhausted from her morning visit to the Children’s Hospital.
I could tell that the mother of the girls on the computer felt uncomfortable in the face of my granddaughter’s developmental challenges. Not that her challenges are anything to be ashamed of, but knowing that others feel uncomfortable around us makes it hard for me to make eye contact sometimes myself. I knew that to others, we looked awkward and loud and off-putting, but at the same time, my sweet grandchild had practiced and practiced and practiced being patient so much, I knew that she was doing her best to waiting to use the computer. She was perseverating on her own struggle with patience, repeating to the point of exhaustion, “I’m being very patient, grandma!” I know that helps her maintain her calm, pass the time, deal with the stimulation that is dysregulated through her nervous system, so I tried to support her as best I could by saying, “Yes, my love, you are being patient.”
I don’t know exactly how long the other girls had been playing video games when we arrived, but I admit my heart sank when I saw them there. Of course, they have every right to use the computers as much as anyone, but this is the thing: Everything is so hard for special needs children like my granddaughter, and sometimes you just wish something would go smoothly and easily. Sometimes you just wish for a break, a simple day. Sometimes after getting through the medical challenges our girl has and helping her navigate through the choppy seas of her day, you see healthy, typically developing young people who always have blue skies and calm waters, and you feel bone weary, a tad bit jealous, and a little frustrated. I put those other girls out of my mind – I had to – a focused on being the most supportive grandma I can be. I kept reassuring my girl that, yes, she was being very patient, and soon, it would be her turn, because experience has taught me that I could best help her that way.
Finally my granddaughter’s loose grip on control escaped her, and she approached one of the girls playing video games. “It’s my turn, it’s my turn!”
For a brief moment I imagined that perhaps I could hope for some compassion from the children, or perhaps their mother, who was, after all, reading the Bible. But do you ever get the feeling that some people choose their books just so that the title will be impressive to those around them? I hate to be judgmental, but I can’t say that The 90 Day Bible Speed Read or whatever it was really impressed me in the way that the woman seemed to hope it might, as she clearly pretended to read it to avoid dealing with the situation at the computers.
Again, I am a little ashamed of myself to make such a judgmental declaration, but moms who find a computer where they can plug their kids in to avoid having to teach or parent them themselves make we want to take a ball point pen and jab myself in the eye. Anyway, since I got no help from the mother and no compassion from her daughter, I simply did the best I could with what stamina I had left. Suffice it to say we managed, and my granddaughter eventually sent a beautiful, loving, supportive email t her brother in Iraq.
You’d think this would be the end of the story, except that today my daughter-in-law brought me this awful thing that had been written about us; the mother from the library said the most horrible, wrong things about my granddaughter and me.
For a moment, I wanted to hate that woman. No, to be honest, for a moment I did. I hated her. But then I remembered something important. I remembered that I once was the parent of three healthy, typical children, and I didn’t know about autism either. I didn’t know about neurologist appointments, IEPs, co-morbid conditions. I didn’t know about patience, and I didn’t know about my granddaughter. I was ignorant once, too. I had to learn too. And I didn’t want anyone to hate me for all that.
I tried to picture this bloggerwoman as someone’s daughter, someone’s granddaughter. When I do that, I can’t hate a person. I just can’t hate someone I can imagine playing in a sandbox.
So after I read what she wrote, I decided to just try to do for that blogger what I tried to do for my granddaughter at the library that day when she was struggling so hard to be patient: I tried to love her. Love isn’t easy. Autism isn’t easy. Patience isn’t easy. Life isn’t easy. But hatred is ugly. Hatred is what that woman wrote on her computer about my family. And hatred is unacceptable. I don’t want to be a part of hatred.
Besides, my mama used to say, “Kill ‘em with kindness.” So, mother from the library? Wherever you are? I want to tell you something. No matter how wrong, mean, and selfish you are, no matter what you write, my granddaughter and I forgive you. We hope you learn your lesson someday about autism, we hope eventually you and your insensitive friends learn how much people with special needs have to offer the world, but even if you are a very slow learner as you appear to be, we forgive you, because we’re patient like that. And, finally, thank you. Thank you for reminding me what amazing children I have raised, what a lucky mother-in-law I am, and how much I treasure all of my grandchildren.
Thursday, March 25, 2010
Total Recall
This week, in addition to the mountain of regular crap, I remembered to do some of the important extras.
I remembered to:
I remembered to:
- send 3 cans of kidney beans in to school with Peaches as required so she could make soup for the homeless;
- send in gfcf candy for the Rooster's school Easter bag (like any good Jewish Mama);
- order regular cupcakes for Peaches class birthday party and gfcf cake for the upcoming family celebration;
- fill out Roo's field trip slip and arrange all the related necessities;
- gather up evals requested by Roo's potential summer tutor;
- bring a gift in to school for a friend;
- pick up prescriptions and Pull-Ups;
- prep for my mother's upcoming arrival on Saturday;
- fill out the Census;
- attend Roo's parent conference;
- set the DVR so I can find out if Parenthood lives up to the hype;
- attend an ABA clinical meeting one night and a meeting with the ABA director and "president" on another...
This week, though, I forgot some stuff. I forgot my sense of humor. I forgot to breathe. As they say in the South where I'm from, I forgot my manners.
Still can't quite remember.
Sunday, March 21, 2010
Anticlimactic
We did a LOT of driving this weekend, heading out of town to visit with J's family. On the way home, we hit traffic, and the natives grew restless. We had heard all the cds too many times, and we had bellies full of snacks. It seemed as good a time as any, really.
"Honey, should we talk about autism?" I asked.
And so we did. Grownups up front, a kid in each of the back two rows, some of the eye contact made through mirrors, we talked about what autism is and what it means for our family. At first they seemed interested, though a little uncertain. Then, they seemed comfortable knowing that Rooster has autism, and that is why we have so many helpers all the time; that autism makes Rooster different from us in some ways, but that we are more alike than we are different.
And then they just wanted to know if I could find and play the song with the pirate girls in it just one more time, and if there were any cookies left.
Now that MOM-NOS inspired me, it might be time to take my show on the road: I might be ready to visit the kindergarteners and see if I can get them to understand what autism is and what it means for their class. I might need to go armed with music and some GFCF cookies, there, too.
"Honey, should we talk about autism?" I asked.
And so we did. Grownups up front, a kid in each of the back two rows, some of the eye contact made through mirrors, we talked about what autism is and what it means for our family. At first they seemed interested, though a little uncertain. Then, they seemed comfortable knowing that Rooster has autism, and that is why we have so many helpers all the time; that autism makes Rooster different from us in some ways, but that we are more alike than we are different.
And then they just wanted to know if I could find and play the song with the pirate girls in it just one more time, and if there were any cookies left.
Now that MOM-NOS inspired me, it might be time to take my show on the road: I might be ready to visit the kindergarteners and see if I can get them to understand what autism is and what it means for their class. I might need to go armed with music and some GFCF cookies, there, too.
Dreams
A few night ago, I heard a noise. Suddenly, it seemed Rooster was three years old again --- I scrambled out of bed and into his room knowing before I got there that he was having a night terror. In the 20 seconds it took me to get to him, I noted how strange it felt to realize I'd nearly forgotten the night terrors that once plagued our home, and how it felt like much more than three years had passed since they happened regularly.
I scooted in bed next to Rooster and out of pure muscle memory began comforting him by stroking his hair, rubbing his back, murmuring reassurance... "It's okay, it's okay, it's okay..." then I remember that none of that stuff had ever worked back in the day. I took a deep breath. Then, it clicked. The power of the deep breath.
I'd been in his room two minutes or so when the last three years of learning from, about, and with my son all clicked into place with the power of the deep breath. I could practically hear the answer spoken aloud. The rooster did not need me to come solve his night terror, to come fret and soothe and worry and smother and TALK. He needed me to breathe. I held him in my arms. I went quiet. As he yelled and cried and clawed at himself, I breathed, long, slow, deep breaths. Within another two minutes, he did the same. He stopped thrashing, he stilled, and he breathed.
For the first time in three years, he had a night terror. For the first time ever, I knew how to help him, by not helping him so much. When I could just relax and breathe, so could my Rooster.
No more night terrors since.
I scooted in bed next to Rooster and out of pure muscle memory began comforting him by stroking his hair, rubbing his back, murmuring reassurance... "It's okay, it's okay, it's okay..." then I remember that none of that stuff had ever worked back in the day. I took a deep breath. Then, it clicked. The power of the deep breath.
I'd been in his room two minutes or so when the last three years of learning from, about, and with my son all clicked into place with the power of the deep breath. I could practically hear the answer spoken aloud. The rooster did not need me to come solve his night terror, to come fret and soothe and worry and smother and TALK. He needed me to breathe. I held him in my arms. I went quiet. As he yelled and cried and clawed at himself, I breathed, long, slow, deep breaths. Within another two minutes, he did the same. He stopped thrashing, he stilled, and he breathed.
For the first time in three years, he had a night terror. For the first time ever, I knew how to help him, by not helping him so much. When I could just relax and breathe, so could my Rooster.
No more night terrors since.
Thursday, March 18, 2010
Notable and Quotable: A Whole Bowl of Peaches
Because my little Peach is about to turn four next week, I feel compelled to give her a post wholly unto herself; that, and she says the most notable and quotable things.
I am brushing Peaches' teeth...
Me: Peaches, your teeth are so little and cute.
Peaches: And yours are so big, and NOT cute!
Peaches is playing dress up...
Peaches: Mama, when I grow up, do you think I should be Belle?
Me: I think you should grow up and be Peaches, Peaches. I don't think you need to be anybody else.
Peaches: Well, Mama, Belle isn't REAL. Nobody is really Belle. So I can be her. It's not like I want to be a REAL PERSON.
I've just picked her up from school, and covered her in hugs and kisses...
Me: Peaches, do you know three people who really love you?
Peaches: YES! Ava, Liam, and Nina! (Classmates)
Me: Oh. Well, yes they do... but...
Peaches: Oh, but Nina called me mean today so she doesn't really love me.
Me: Well, I know one more person who does love you a whole lot...
Peaches: OH! YEAH! My friend LILY loves me! Yeah, Ava, Liam and Lily...
Rooster is diving in mid-stream to a retelling of a movie, as he does, before he even says hello to our visitors...
Peaches (in a stage whisper): Rooster? Rooster? Give them the CONTEXT Rooster, or they won't know what you're talking about.
We love you, Peaches. Even more than Ava and Liam and Lily do.
I am brushing Peaches' teeth...
Me: Peaches, your teeth are so little and cute.
Peaches: And yours are so big, and NOT cute!
Peaches is playing dress up...
Peaches: Mama, when I grow up, do you think I should be Belle?
Me: I think you should grow up and be Peaches, Peaches. I don't think you need to be anybody else.
Peaches: Well, Mama, Belle isn't REAL. Nobody is really Belle. So I can be her. It's not like I want to be a REAL PERSON.
I've just picked her up from school, and covered her in hugs and kisses...
Me: Peaches, do you know three people who really love you?
Peaches: YES! Ava, Liam, and Nina! (Classmates)
Me: Oh. Well, yes they do... but...
Peaches: Oh, but Nina called me mean today so she doesn't really love me.
Me: Well, I know one more person who does love you a whole lot...
Peaches: OH! YEAH! My friend LILY loves me! Yeah, Ava, Liam and Lily...
Rooster is diving in mid-stream to a retelling of a movie, as he does, before he even says hello to our visitors...
Peaches (in a stage whisper): Rooster? Rooster? Give them the CONTEXT Rooster, or they won't know what you're talking about.
We love you, Peaches. Even more than Ava and Liam and Lily do.
Saturday, March 13, 2010
Notable and Quotable 15
We've been approaching math from every possible angle, no pun intended, yet after a trillion games, songs, stories, activities (chocolate chip math!), even a great They Might Be Giants math cd, I can still say, "Roo, what is 2 plus 2? Two and two are..." and he will stare vacantly at me while his 3-year-old sister puts up her fingers, counts them, shows him, and says, "FOUR! LOOK! FOUR!" So my first notable and quotable from today comes from trying to do math homework with with my boy. I sat down next to him and picked up his pencil, to which Roo said, "Mommy! Mommy? I work alone!"
Peaches wanted to dress like a ballerina today. Well, her outfit didn't say ballerina to me as much as it said maybe West Side Story Halloween costume attempt, but okay. Then, she kept asking me over and over how to do a "Pee Lay." I tried not to snicker the first time I corrected her, but she adamantly insisted, "No, I want to Pee Lay! PEE LAY, Mama. Peeeeeeeeee Laaaaaaaaaayy," like I was an idiot. And then she would bow, or curtsy, or something that said Pee Lay to her. Wish I put it on YouTube.
I took the kids for haircuts today, and it actually went rather well, by our standards. They looked fantastic, I thought. Grown up and impish and cute. We got home and Roo said, "Mommy, can you put my curls back on me now? I need them."
My Peach isn't always terribly diplomatic or prone to forgiveness. Tonight, though, when her brother threw a temper tantrum because it was time to turn off the TV, she just looked me in the eye for a beat and said, "Everybody can do the best they can. He'll do better tomorrow."
I hope so, Peach. I look forward to it.
Peaches wanted to dress like a ballerina today. Well, her outfit didn't say ballerina to me as much as it said maybe West Side Story Halloween costume attempt, but okay. Then, she kept asking me over and over how to do a "Pee Lay." I tried not to snicker the first time I corrected her, but she adamantly insisted, "No, I want to Pee Lay! PEE LAY, Mama. Peeeeeeeeee Laaaaaaaaaayy," like I was an idiot. And then she would bow, or curtsy, or something that said Pee Lay to her. Wish I put it on YouTube.
I took the kids for haircuts today, and it actually went rather well, by our standards. They looked fantastic, I thought. Grown up and impish and cute. We got home and Roo said, "Mommy, can you put my curls back on me now? I need them."
My Peach isn't always terribly diplomatic or prone to forgiveness. Tonight, though, when her brother threw a temper tantrum because it was time to turn off the TV, she just looked me in the eye for a beat and said, "Everybody can do the best they can. He'll do better tomorrow."
I hope so, Peach. I look forward to it.
Friday, March 12, 2010
Spit it Out
If you have a solution to stopping my boy from spitting when he gets furious, PLEASE share it.
I know there is a solution, but I don't know what it is. I have ideas, but some could backfire. I wish there were an immediate answer; when is there ever?
Ideas I've considered:
social stories (take forever, and don't have one for this)
carrots (if you don't spit, you can earn... but he can't delay gratification)
threats (bad idea! i know! i know! i know! but OY!)
crying a lot (nope, not enough energy on reserve)
Spitting is not okay; I'm perseverating on that thought right now, in a tailspin.
All behavior is communication, and I know he's frustrated. He spit because he didn't earn a reward in class, he spit because someone had a toy he wanted, he spit for several reasons, but he needs a different behavior to show he's frustrated. His inclusion teacher offered several...
Do you have one that would work? You are wise parents... gimme the magic trick for this one, please?
Please?
I will owe you Big.
I know there is a solution, but I don't know what it is. I have ideas, but some could backfire. I wish there were an immediate answer; when is there ever?
Ideas I've considered:
social stories (take forever, and don't have one for this)
carrots (if you don't spit, you can earn... but he can't delay gratification)
threats (bad idea! i know! i know! i know! but OY!)
crying a lot (nope, not enough energy on reserve)
Spitting is not okay; I'm perseverating on that thought right now, in a tailspin.
All behavior is communication, and I know he's frustrated. He spit because he didn't earn a reward in class, he spit because someone had a toy he wanted, he spit for several reasons, but he needs a different behavior to show he's frustrated. His inclusion teacher offered several...
Do you have one that would work? You are wise parents... gimme the magic trick for this one, please?
Please?
I will owe you Big.
Thursday, March 11, 2010
Snippets
I carry a crazy rag bag of memory snippets around in my own head, and since my own head is the only one I can see from the inside, I'm never sure if it looks like anyone else's, but I must sort of assume it does or question my own sanity. I prefer not to question my own sanity, thank you. So I find myself lately thinking about the snippets of the past in my mental rag bag, and wondering about what bags my children will carry with them.
In my own bag, I have some particularly odd school-related scraps that seem to resurface frequently when I rifle through. There's a glimpse of myself in the fifth grade dressed as a cardboard hamburger for a play about nutrition, an even shorter piece in which I'm walking from one class to another trying to remember the spelling and definition of "bucolic" for a vocabulary test, a large swath of frustration from having to make the letter P into a picture that looked like a PIG in first grade, when already I could have spelled BOVINE but could not begin to draw so much as a recognizable stick figure. Then there are the bits of pieces of exceedingly random memories I carry around of my mom, apropos of nothing I can figure -- the bee that swam into her soda can at the pool, the time she made me go wallpaper shopping with her when I was 8 and I couldn't stay awake because it was so boring, how she took me to the mall with her once so she could buy a bathing suit for a trip to Florida even though when we got there it actually snowed while we were at Disney World.
Some of my memory snippets embarrass me; I mean, they are memories of me being embarrassed (like the time I forgot to lock the bathroom door when I was at work in college), and yet when I think of them, I relive the embarrassment as if for the first time.
I have an impulse to protect my children from the negative snippets, but I don't think that is possible.
When I catch myself saying something stupid or insensitive to them, I try to stop myself with this reminder: Do I want it to make into their high rotation snippets?
And sometimes, control freak that I guess I am, wishing I could take a moment we just had and foist in into their snippet library.
I guess now that they are getting to be ages that I can recall being myself, it occurs to me that we are truly laying a foundation for their memories now. It strikes me as a daunting thought, like the realization that, as they are about to turn 4 and 6, no babies live at my house any more.
One thing must be true: my children cannot possibly remember a time BEFORE we had ABA in our lives. My children cannot possibly remember life before autism, though they don't yet grasp what that means.
Also, there is no way they can remember me before I had grooves etched in my face. In their memory, I've always had "old feet," too.
Today as I drove to school, Peaches wanted to know all about my Grandpa. She kept getting confused between who her grandpa is and who mine was, but she kept saying, "Can you tell me more?" I told her the big stuff first, and then I had to rely on the snippets. When I close my eyes and picture my grandpa, I briefly see him putting his keys in the pocket of his plaid golf pants, then next dancing a little jig around the breakfast table, then taking bananas to his 92-year-old mother, then handing me a stick of Big Red gum. Sadly, I have no way to pass those snippets to my kids, or make them very meaningful or coherent for them, so I keep those to myself, cherishing the way they keep my grandparents alive for me if not for my children. Surely these memories make me wonder what will first will come to my children's minds about me one day. Just the thought is enough to inspire me to my best behavior for at least a little while.
When I think about school, and particularly my son's experience with it, I get very anxious about the memories he's making there, and the impression that they leave with him.
Does anyone else feel this way, too?
In my own bag, I have some particularly odd school-related scraps that seem to resurface frequently when I rifle through. There's a glimpse of myself in the fifth grade dressed as a cardboard hamburger for a play about nutrition, an even shorter piece in which I'm walking from one class to another trying to remember the spelling and definition of "bucolic" for a vocabulary test, a large swath of frustration from having to make the letter P into a picture that looked like a PIG in first grade, when already I could have spelled BOVINE but could not begin to draw so much as a recognizable stick figure. Then there are the bits of pieces of exceedingly random memories I carry around of my mom, apropos of nothing I can figure -- the bee that swam into her soda can at the pool, the time she made me go wallpaper shopping with her when I was 8 and I couldn't stay awake because it was so boring, how she took me to the mall with her once so she could buy a bathing suit for a trip to Florida even though when we got there it actually snowed while we were at Disney World.
Some of my memory snippets embarrass me; I mean, they are memories of me being embarrassed (like the time I forgot to lock the bathroom door when I was at work in college), and yet when I think of them, I relive the embarrassment as if for the first time.
I have an impulse to protect my children from the negative snippets, but I don't think that is possible.
When I catch myself saying something stupid or insensitive to them, I try to stop myself with this reminder: Do I want it to make into their high rotation snippets?
And sometimes, control freak that I guess I am, wishing I could take a moment we just had and foist in into their snippet library.
I guess now that they are getting to be ages that I can recall being myself, it occurs to me that we are truly laying a foundation for their memories now. It strikes me as a daunting thought, like the realization that, as they are about to turn 4 and 6, no babies live at my house any more.
One thing must be true: my children cannot possibly remember a time BEFORE we had ABA in our lives. My children cannot possibly remember life before autism, though they don't yet grasp what that means.
Also, there is no way they can remember me before I had grooves etched in my face. In their memory, I've always had "old feet," too.
Today as I drove to school, Peaches wanted to know all about my Grandpa. She kept getting confused between who her grandpa is and who mine was, but she kept saying, "Can you tell me more?" I told her the big stuff first, and then I had to rely on the snippets. When I close my eyes and picture my grandpa, I briefly see him putting his keys in the pocket of his plaid golf pants, then next dancing a little jig around the breakfast table, then taking bananas to his 92-year-old mother, then handing me a stick of Big Red gum. Sadly, I have no way to pass those snippets to my kids, or make them very meaningful or coherent for them, so I keep those to myself, cherishing the way they keep my grandparents alive for me if not for my children. Surely these memories make me wonder what will first will come to my children's minds about me one day. Just the thought is enough to inspire me to my best behavior for at least a little while.
When I think about school, and particularly my son's experience with it, I get very anxious about the memories he's making there, and the impression that they leave with him.
Does anyone else feel this way, too?
Friday, March 5, 2010
Sisters Everywhere
In my last post, I talked about how we are all related. I was thinking about my friend Elsa, whose niece suffered one tragic lost after another in Chile. I was glad I could lend a hand to Graciela, her niece, who I never would have heard of had I not met Elsa in an OT waiting room and she reached out to me, one mom to another.
Today I am thinking about how related we are once again. We are one big family, and there are all kinds of needs in our family. Autism is a part of our family, for better or worse.
I am writing from a professional development workshop. I came here full of excitement --- totally professionally pumped. I had to apply to get into this workshop, I had to work hard to make my application, and I looked at this trip as a bit of a graduation... me embarking on opportunities to think about something other than autism, to stretch my brain, to stretch my wings, to take on challenges. And I am loving it here at this workshop, and I am loving learning, and I'm loving connecting professionally. But are you ready for this? One of the best parts so far has been NOT "leaving autism behind." I mean, don't get me wrong, I had fun "flying solo" and relaxing in the airport with a magazine, but one of the best parts is realizing how, as much as I wish autism NEVER existed, it is a part of me, part of us all, and it can help us learn and connect. If you read here, you know I'm no cheerleader, and I rail against autism. But I can celebrate our community, and I can celebrate our children, our children who have autism, and our hope, our possibilities, our potential. It is EVERYWHERE.
See, when I got into this workshop, I had trouble getting a hotel room, so I took a chance and asked a woman who works at a sister school who also got in if we could be roommates. Last night when we were introducing ourselves to one another at the Marriott, she said to me, "My five year old son has autism."
Can you believe that I am OUT OF TOWN and still STAYED UP TOO LATE and didn't get enough sleep in a bed with all that thread count and delicious pillows? If you could see the BAGS under my eyes... OY.
My roommate and I have some serious stuff in common. Piles and loads and heaps and mounds of stuff in common. And we are very different. We talked about doctors and ABA and schools and meds and theories and guilt and denial and special talents and boys and potty training and husbands and working and IEPs and inclusion and special ed and movies and .... it helped.
And as we were talking I realized I'd been holding my breath when I arrived at the conference. I loved NOT talking about autism, on the one hand, but I also felt I was holding something back. Everyone was talking about their kids, and I felt I had something I wasn't saying. I do not love autism. I love a boy who has autism, and many families who love someone with autism. I can't "leave it behind." I can't leave being Jewish behind. I can't leave being married or short or neurotic behind.
Autism comes with me, and that isn't so bad. My family is ALWAYS with me. Wherever I go.
We're all a family. We have a lot of sisters.
Oh, I am learning A LOT at this conference. And I love it.
Today I am thinking about how related we are once again. We are one big family, and there are all kinds of needs in our family. Autism is a part of our family, for better or worse.
I am writing from a professional development workshop. I came here full of excitement --- totally professionally pumped. I had to apply to get into this workshop, I had to work hard to make my application, and I looked at this trip as a bit of a graduation... me embarking on opportunities to think about something other than autism, to stretch my brain, to stretch my wings, to take on challenges. And I am loving it here at this workshop, and I am loving learning, and I'm loving connecting professionally. But are you ready for this? One of the best parts so far has been NOT "leaving autism behind." I mean, don't get me wrong, I had fun "flying solo" and relaxing in the airport with a magazine, but one of the best parts is realizing how, as much as I wish autism NEVER existed, it is a part of me, part of us all, and it can help us learn and connect. If you read here, you know I'm no cheerleader, and I rail against autism. But I can celebrate our community, and I can celebrate our children, our children who have autism, and our hope, our possibilities, our potential. It is EVERYWHERE.
See, when I got into this workshop, I had trouble getting a hotel room, so I took a chance and asked a woman who works at a sister school who also got in if we could be roommates. Last night when we were introducing ourselves to one another at the Marriott, she said to me, "My five year old son has autism."
Can you believe that I am OUT OF TOWN and still STAYED UP TOO LATE and didn't get enough sleep in a bed with all that thread count and delicious pillows? If you could see the BAGS under my eyes... OY.
My roommate and I have some serious stuff in common. Piles and loads and heaps and mounds of stuff in common. And we are very different. We talked about doctors and ABA and schools and meds and theories and guilt and denial and special talents and boys and potty training and husbands and working and IEPs and inclusion and special ed and movies and .... it helped.
And as we were talking I realized I'd been holding my breath when I arrived at the conference. I loved NOT talking about autism, on the one hand, but I also felt I was holding something back. Everyone was talking about their kids, and I felt I had something I wasn't saying. I do not love autism. I love a boy who has autism, and many families who love someone with autism. I can't "leave it behind." I can't leave being Jewish behind. I can't leave being married or short or neurotic behind.
Autism comes with me, and that isn't so bad. My family is ALWAYS with me. Wherever I go.
We're all a family. We have a lot of sisters.
Oh, I am learning A LOT at this conference. And I love it.
Monday, March 1, 2010
When Tragedy Hits Home
We are all related.
I have a friend. I've told you about her before on this blog. We met in a waiting room, waiting for our boys, sometimes amusing our girls while we waited together outside the OT room. One day my son had an emergency, and thank goodness we finally broke the waiting room silence; she lent me a hand in a way that forged instant affection. Elsa. For women who would appear to have so little in common, we share so much.
Elsa is a friend, a fellow blogger, an artist, a wonderful mother, a beautiful person. I wrote a post once wanting people who read here to see her blog and find out about her art. Today, I need you to read her blog for another reason. Elsa has a story about Chile, where there has been such tragedy with the recent 8.8 earthquake. Elsa has a story to tell about her niece, who has struggled through more than any mother should have to in recent weeks and yet remains strong and hopeful. Maybe you can help, or maybe you cannot. But I deeply want to share the story with you. There are so many brave people in the world - you never know who is sitting next to you in a waiting room unless someone speaks first.
Please go visit my friend Elsa Mora's blog. Because we all are related. We are all vulnerable. We all need a helping hand sometime. We are all in waiting rooms eventually. Earthquakes can strike anywhere; tsunamis reach far and wide. We all need hope. We are all family.
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