Holy crap. What does the Florida state attorney's office consider emotional child abuse???
Not only was Alex Barton emotionally abused, but so was his entire class.
There's alot of buzz about how this child may have autism, and that autism caused behavioral issues, and this incident stems from those issue and behaviors.
I don't give a flying flip if he was from Mars and spit on the grave of the teacher's grandmother. You don't use a classroom of children to publicly humiliate a child. If having every peer a child has stand in front of him and tell him that he is not liked for various specific reasons and then vote him out of the class isn't emotional child abuse, folks, what the hell is??? It isn't like he wasn't just in the principal's office, for pete's sake! Don't you think he was already appropriately reprimanded? Do you have rub his nose into the dirt, too?
We always know when there has been a problematic incident at school; Joey comes home very upset, often repeating phrases such as "You're going to Ms. T!" or "Do you need to see Ms. T?" or "Ms. T... room 44." Ms. T is our principal (whom he actually calls Ms. T- I'm not hiding her name for FERPA. That is Joey's name for her.) We had a pretty long stretch after Christmas when it was so bad, and he was so perseverative on this, that I called and asked if he had been sent to Ms. T for something. He hadn't.
But other students in the class had. Some of them go quite regularly, even when in self-contained situations. If the strategies for dealing with behavior run out, that is where a student must go, so everyone is safe and the situation can be addressed. However, it doesn't just impact the student in distress; it also distresses the classmates- including Joey.
All of those students were part of beating up on a classmate. How many of them now live in fear that they may be next?
So I don't even see this as one count of child abuse. This was an assault on an entire classroom of children, with Alex Barton as the focus. If our current information is correct, and the teacher confirmed that this incident occurred, I have no idea why she remains employed. Even if the police do not know abuse when they see it, surely the school administration can clearly see a case of intentional causing of emotional distress in a child? Surely immediate suspension for a investigation is warranted? And if our information is, in fact, correct, a speedy dismissal?
Why aren't all the parents- not just Alex Barton's- up at arms about this, calling for this teacher's immediate dismissal? If this was either of my kids, they would not be returned to that class for any reason. And if immediate action wasn't taken, I'd be thinking "lawsuit" too.
*****************
Since Google seems to have picked up on this post (thus channeling a good bit of new traffic to this post), allow me to direct folks to some other excellent posts on the subject. All of these blogs are worth reading. Sorry if the list is not inclusive of all the great blogs and posts which have addressed this, but you should make the rounds of most of them after checking these out and the posts and blogs the refer to:
Whitterer on Autism
Club 166
Mom- Not Otherwise Specified
Maternal Instincts
Perseveration.org
Big White Hat
A Room of Mama's Own
Saturday, May 24, 2008
Once upon a time, five minutes ago
He sits in the middle of the living room in a sea of paper, wielding the blue marker. He is writing large letters on the papers, blocky poster-style ones.
"I make a R for Ralphie," he announces. "I make A for Arnold." He turns to me. "What is your name?"
He isn't asking me for my name. He is asking which Magic School Bus character I want to pretend to be.
"I'm Liz," I reply semi-automatically.
"I'm Ms. Frizzle," he nods and draws another letter.
"I'm Dorothy Ann!" his brother lisps happily and dances around, making his dinosaurs fight.
He grabs his blue sand bucket and puts it on his head, with the handle under his chin. For some reason, this is part and parcel of being Ms. Frizzle. Some days he's the bus. Those are fun.
He makes a series of short and long lines- a road. He spends a moment driving on it, then turns back to me.
"I'm Arnold!" he announces. "I should have stayed home today!" This is Arnold's catchline.
"You are a perfect Arnold," I assure him.
"You're Arnold, too," he grins. "Are you coming to my house? Can we stick it?" He holds up a big A drawn on the paper. I pull off a little bit of tape, and he sticks it to his chest. "I am Arnold."
He carefully draws another A, considers it, removes the old one, and makes another demand for tape.
"This is the better A. Is this the better A?"
"It's lovely, dear. You are a very good writer." He beams. He sticks the other A to my chest.
"You are Arnold, too."
"Yes, my love."
"Can I be Phoebe?"
"Of course you can." He takes off the A, and gets to work to make a P. I prepare the tape. He proudly presents his P... and I stick it on him.
"At my old school, we came to my house." Phoebe's catchline: 'At my old school...'
"I'm Ms. Frizzle," he sighs and makes an F. "To the bus! Single file, please!"
He changes personalities every few moments. He labels himself with the appropriate letter. He recites the catchlines, with slight variations (such as the "we came to my house"). The afternoon wears on, shifting from character to character to character. His brother interjects now again with "I'm Dorothy Ann!" His dinosaurs fight on.
Ah, nice, quiet afternoons, full of chatter. Sometimes dreams do come true.
"I make a R for Ralphie," he announces. "I make A for Arnold." He turns to me. "What is your name?"
He isn't asking me for my name. He is asking which Magic School Bus character I want to pretend to be.
"I'm Liz," I reply semi-automatically.
"I'm Ms. Frizzle," he nods and draws another letter.
"I'm Dorothy Ann!" his brother lisps happily and dances around, making his dinosaurs fight.
He grabs his blue sand bucket and puts it on his head, with the handle under his chin. For some reason, this is part and parcel of being Ms. Frizzle. Some days he's the bus. Those are fun.
He makes a series of short and long lines- a road. He spends a moment driving on it, then turns back to me.
"I'm Arnold!" he announces. "I should have stayed home today!" This is Arnold's catchline.
"You are a perfect Arnold," I assure him.
"You're Arnold, too," he grins. "Are you coming to my house? Can we stick it?" He holds up a big A drawn on the paper. I pull off a little bit of tape, and he sticks it to his chest. "I am Arnold."
He carefully draws another A, considers it, removes the old one, and makes another demand for tape.
"This is the better A. Is this the better A?"
"It's lovely, dear. You are a very good writer." He beams. He sticks the other A to my chest.
"You are Arnold, too."
"Yes, my love."
"Can I be Phoebe?"
"Of course you can." He takes off the A, and gets to work to make a P. I prepare the tape. He proudly presents his P... and I stick it on him.
"At my old school, we came to my house." Phoebe's catchline: 'At my old school...'
"I'm Ms. Frizzle," he sighs and makes an F. "To the bus! Single file, please!"
He changes personalities every few moments. He labels himself with the appropriate letter. He recites the catchlines, with slight variations (such as the "we came to my house"). The afternoon wears on, shifting from character to character to character. His brother interjects now again with "I'm Dorothy Ann!" His dinosaurs fight on.
Ah, nice, quiet afternoons, full of chatter. Sometimes dreams do come true.
Friday, May 23, 2008
Busy busy busy
We've had quite a month. ALlan was away for two weeks, one being the first week of this month. We went to see him at the beach, and went to the zoo, and saw big boats, and fed fish. The boys went to the circus. They went to Williamsburg. They went to the aquarium. They went to the circus again. They went to the Rainforest Cafe yesterday. Andy had a birthday. They are right now camped out in their tent in the livingroom. Yes, it's been quite a month.
Additionally, my mom's cousin is in the hospital; she was on a respirator for a while, but is now improving. at one point, she had to be revived. This week, mom's Uncle Bob (the cousin's father, no less) suddenly died. We were at the funeral yesterday. (Hence all the drives to Baltimore).
Spring semester closed, finals had to be graded, and grades calculated and turned in. My summer semester started. We had a pre-IEP meeting. We had the IEP meeting.
The boys had their checkups. I went to the doctor with a funny spot on my leg that wouldn't go away. That turned out to be nothing, but the nurse detected PVCs when she took my pulse. One EKG later and I was having blood drawn. All normal there; so off to the cardiologist. In the wake of the costochondritis episode, no less. More tests on Wednesday.
Plus our regularly scheduled activities and fun.
Why am I tired? I don't understand.
Additionally, my mom's cousin is in the hospital; she was on a respirator for a while, but is now improving. at one point, she had to be revived. This week, mom's Uncle Bob (the cousin's father, no less) suddenly died. We were at the funeral yesterday. (Hence all the drives to Baltimore).
Spring semester closed, finals had to be graded, and grades calculated and turned in. My summer semester started. We had a pre-IEP meeting. We had the IEP meeting.
The boys had their checkups. I went to the doctor with a funny spot on my leg that wouldn't go away. That turned out to be nothing, but the nurse detected PVCs when she took my pulse. One EKG later and I was having blood drawn. All normal there; so off to the cardiologist. In the wake of the costochondritis episode, no less. More tests on Wednesday.
Plus our regularly scheduled activities and fun.
Why am I tired? I don't understand.
Fine lines
In our runs and reruns up and down the road between here and Baltimore (yes, I know Stimey, all those miles and I haven't stopped in to meet you. Bad Joeymom. Bad. No doughnut.) my mom and I have been getting in some good chat-time. We talk about Joey a lot. We talk about autism. We have slightly different views of autism, but I think both perspectives are good for helping Joey.
One thing we've been talking about is the fine distinctions in our experience of autism. Where is that line between social construct and "real" disability? At one point does one take stock of limitations and deal with them?
I know that there are people- including several of you all- who believe that all disability is social construct. I find that view interesting, and sometimes helpful. However, it isn't jiving with my experience. If Joey was perfectly happy and fulfilled not speaking, not being able to interact with his peers, not being able to self-regulate, well, maybe I would think differently. But I see the frustration. I see the struggle. I see the work he puts in, the enthusiasm, the desire; and the (very upsetting to him) fail. And the increasingly rarer Epic Fail.
For us, Joey is Joey. He's my son. I want to help him learn to be happy, help him succeed, help him be the person he wants to be. He's only six years old. Helping him become that person is part of my job as a Mom. Choosing who that person will be is Joey's job. If he wants to be a marine biologist and swim with dolphins, then by God, I am going to do everything I can to help him succeed in becoming a marine biologist and swim with dolphins. What will he need to succeed? How can I help?
I have navigated the world of academia. We can argue about how social skills should or shouldn't be necessary, but they are. Speaking shouldn't be a requirement, but effective communication is a must. Melting down because he can't have a blue folder is not going to be acceptable behavior when he reaches college or grad school. He is going to have to communicate to his professors that he understands what they are trying to teach him.
Enter occupational therapy and speech therapy. OT helps him self-regulate, helps him learn to interact with others, learn how to control his own body and perform important tasks for daily living, such as following instructions and coping with overload. Speech therapy should never be just about speaking- it is about communicating. For us, it is more about speaking because Joey now speaks, but I'm firmly in the camp of it being about communication first and foremost. A speech therapist who can't use AT isn't very helpful for an awful lot of kids who need it to communicate, or even springboard into speech.
When we start talking about the need to teach Joey to speak and interact, remember most kids learn these things by natural imitation and assimilation. Most kids do not have lessons in how to ask another child to play on the playground. They figure it out by walking up to other kids and testing some strategies they saw other kids or adults use. They figure out which ones work best for them, and go for it. Joey has lessons, practicing carefully with other children in staged and controlled situations. He never figured out how to do it on his own (though he tried hard- he just loves other kids!)
As Joey's communication skills and social skills increase, his ability to imitate and assimilate also increases- he can figure out more things on his own, because he gathers tools for figuring things out on his own. Just as he learned to speak initially by imitating Oobi- then shifting the words or inserting words to fit what he saw around him (making the scripting nearly transparent to those not familiar with Joey and Oobi)- Joey incorporates the rehearsed interactions and alters them to fit the situation at hand. Slowly, the rehearsing will become transparent, as it does for us all.
So where is the fine line? Is Joey disabled, or is here a social construct that results in his own frustration? Is apraxia a real disability, or just a label we slap on him to keep him in special ed? If it is just a social construct, should I be able to break down that construct and have him be happy- or is it instead a real disability, that needs to be addressed (usually by therapy) and supported (via accommodations and educational strategies)? If I tore down the construct, would Joey be happy? Or would he remain frustrated with his struggle to communicate?
Perhaps I should take up the issue of how many different ways we can view a single person, how many facets we can juggle, how we can use a variety of lenses and perspectives, and still be considering the same person. Joey is Joey. When I walk into an IEP meeting, what does that mean? When he crawls into my bed at night? When I take him to the zoo? When I take him to the store? When I visit him in school? When he sits down to eat his dinner? Yes, he remains the same Joey, but I have to consider different aspects, different needs, different roles.
After all, I'm a mom, a wife, a daughter, a blonde, a niece, a sister, a Virginian, a professor, a student, a woman, a rater, a score leader, a Caucasian, a chairperson, a PhD, a researcher, a genealogist, a citizen, an American, a patient, a customer, a client... what is real? what is a construct?
One thing we've been talking about is the fine distinctions in our experience of autism. Where is that line between social construct and "real" disability? At one point does one take stock of limitations and deal with them?
I know that there are people- including several of you all- who believe that all disability is social construct. I find that view interesting, and sometimes helpful. However, it isn't jiving with my experience. If Joey was perfectly happy and fulfilled not speaking, not being able to interact with his peers, not being able to self-regulate, well, maybe I would think differently. But I see the frustration. I see the struggle. I see the work he puts in, the enthusiasm, the desire; and the (very upsetting to him) fail. And the increasingly rarer Epic Fail.
For us, Joey is Joey. He's my son. I want to help him learn to be happy, help him succeed, help him be the person he wants to be. He's only six years old. Helping him become that person is part of my job as a Mom. Choosing who that person will be is Joey's job. If he wants to be a marine biologist and swim with dolphins, then by God, I am going to do everything I can to help him succeed in becoming a marine biologist and swim with dolphins. What will he need to succeed? How can I help?
I have navigated the world of academia. We can argue about how social skills should or shouldn't be necessary, but they are. Speaking shouldn't be a requirement, but effective communication is a must. Melting down because he can't have a blue folder is not going to be acceptable behavior when he reaches college or grad school. He is going to have to communicate to his professors that he understands what they are trying to teach him.
Enter occupational therapy and speech therapy. OT helps him self-regulate, helps him learn to interact with others, learn how to control his own body and perform important tasks for daily living, such as following instructions and coping with overload. Speech therapy should never be just about speaking- it is about communicating. For us, it is more about speaking because Joey now speaks, but I'm firmly in the camp of it being about communication first and foremost. A speech therapist who can't use AT isn't very helpful for an awful lot of kids who need it to communicate, or even springboard into speech.
When we start talking about the need to teach Joey to speak and interact, remember most kids learn these things by natural imitation and assimilation. Most kids do not have lessons in how to ask another child to play on the playground. They figure it out by walking up to other kids and testing some strategies they saw other kids or adults use. They figure out which ones work best for them, and go for it. Joey has lessons, practicing carefully with other children in staged and controlled situations. He never figured out how to do it on his own (though he tried hard- he just loves other kids!)
As Joey's communication skills and social skills increase, his ability to imitate and assimilate also increases- he can figure out more things on his own, because he gathers tools for figuring things out on his own. Just as he learned to speak initially by imitating Oobi- then shifting the words or inserting words to fit what he saw around him (making the scripting nearly transparent to those not familiar with Joey and Oobi)- Joey incorporates the rehearsed interactions and alters them to fit the situation at hand. Slowly, the rehearsing will become transparent, as it does for us all.
So where is the fine line? Is Joey disabled, or is here a social construct that results in his own frustration? Is apraxia a real disability, or just a label we slap on him to keep him in special ed? If it is just a social construct, should I be able to break down that construct and have him be happy- or is it instead a real disability, that needs to be addressed (usually by therapy) and supported (via accommodations and educational strategies)? If I tore down the construct, would Joey be happy? Or would he remain frustrated with his struggle to communicate?
Perhaps I should take up the issue of how many different ways we can view a single person, how many facets we can juggle, how we can use a variety of lenses and perspectives, and still be considering the same person. Joey is Joey. When I walk into an IEP meeting, what does that mean? When he crawls into my bed at night? When I take him to the zoo? When I take him to the store? When I visit him in school? When he sits down to eat his dinner? Yes, he remains the same Joey, but I have to consider different aspects, different needs, different roles.
After all, I'm a mom, a wife, a daughter, a blonde, a niece, a sister, a Virginian, a professor, a student, a woman, a rater, a score leader, a Caucasian, a chairperson, a PhD, a researcher, a genealogist, a citizen, an American, a patient, a customer, a client... what is real? what is a construct?
Wednesday, May 21, 2008
Tuesday, May 20, 2008
In case you were interested...
According to Joey, who can claim to be an expert as he has now seen her twice in the last week, the Tooth Fairy is actually a large blue bunny rabbit.
Just in case you wanted to know.
Monday, May 19, 2008
On the Edge
If you are stressed out, it's your own damn fault.
That's the message running around these days. Modern lifestyle is too hectic- if you'd just slow down and simplify, you wouldn't be stressed. If you'd just take a minute for yourself, you wouldn't be stressed. If you'd just take a nap, you wouldn't be so stressed. If you'd just accept life as it is, you wouldn't be stressed. What's your problem? Why are you so stupid? Get out of the rat race and you wouldn't be stressed!
Yes, and when these things drop from mouths and screens around me, I start wondering about how that would sound if I turned it around on someone else. Replaced a few choice words. But offending others isn't going to help my stress level. It isn't going to get me any more sleep. It's not going to do a thingy-dingy for my blood pressure, or my PVCs, or my asthma. Nor will it help Joey or Andy.
Yes, modern life asks me to do things differently than they did once. Not too long ago, a child with communication issues like my Joey would have been probably labeled mentally retarded, and ended up in a group home (at best), working menial jobs (at best), and probably not spoken about. Children not much more severe than my Joey would have been locked up in institutions and forgotten. Or perhaps a kid with Joey's communication issues could have been found a place on the farm, if he managed any form of communication enough to understand directions. If not- well, those farm kids probably ended up locked up, too- in institutions, in homes- like Boo Radley. Having enough receptive language to understand "muck out the stables," he might have gotten by and survived, scorned as the local idiot or weirdo. We have people walking around our town suffering this fate right this minute. Today. Is this the life I want for Joey?
I see plenty of parents who do little to support their disabled kids. They refuse special education services. They send them to school, and trust the school to provide all the necessary therapies. They assume the state will take care of their child, help their child reach their potential. That's not even what schools do for non-disabled kids! I look at these kids, and glimpse echoes of what might Joey be like if I did the same. If I just went about my "normal" life, instead of what I do. I haven't seen any current outcome that is positive. None.
So I drive him to speech therapy. I drive him to occupational therapies. I work four jobs, so I can pay for them, and for the little ABA he gets. I take him with me all over town. I take him to the store. I take him to the farm. I take him to Williamsburg. I take him to the zoo. I take him to the beach.
It was almost two years ago when we last took Joey to the Aquarium in Baltimore. We went again yesterday. What a difference a couple of years can make. You might remember the disaster we had last time. Basically, meltdowns at every scale level throughout the day, but mostly in the 8-10 range. Dark, crowded rooms are not Joey's thing.
This time, he had a blast. He loved the fish. He's very into fish right now. It can sometimes be hard to tell what Joey is really interested in, so I'm tickled to discover something he really likes, and isn't just saying he likes because other kids say they like it. He's very into the beach and sealife. Maybe he'll be a marine biologist! He looked into the tanks, and saw the fish, and pointed at them, and wanted Andy to see them, too. He laughed. He looked for Nemo and for Dory. We saw Dory-fish (blue tang). We saw sharks. We saw anemones.
Then we went to the dolphin show. It was far better than the show we saw before- and we sat in the splash zone. We got soaked. Andy freaked. Joey was ecstatic. He proudly proclaimed himself wet to anyone who would listen. He laughed and squealed with glee at the tricks, and wanted to get in the water and swim with the dolphins. He's been pretending to be a dolphin all afternoon today. How's that for success?
Yes, he's growing up. That makes a difference. But he's also doing a lot of hard work, because he wants to know about the world, he wants to communicate with us, he wants to be in on the action of life. Did he blend in, look like other kids, act like other kids? No. No need for specifics. He's Joey, and he was Joey at the aquarium. But he was happy.
That's worth a lot of stress on my part. Modern life is still life, and I still think it is important for him to enjoy it.
That's the message running around these days. Modern lifestyle is too hectic- if you'd just slow down and simplify, you wouldn't be stressed. If you'd just take a minute for yourself, you wouldn't be stressed. If you'd just take a nap, you wouldn't be so stressed. If you'd just accept life as it is, you wouldn't be stressed. What's your problem? Why are you so stupid? Get out of the rat race and you wouldn't be stressed!
Yes, and when these things drop from mouths and screens around me, I start wondering about how that would sound if I turned it around on someone else. Replaced a few choice words. But offending others isn't going to help my stress level. It isn't going to get me any more sleep. It's not going to do a thingy-dingy for my blood pressure, or my PVCs, or my asthma. Nor will it help Joey or Andy.
Yes, modern life asks me to do things differently than they did once. Not too long ago, a child with communication issues like my Joey would have been probably labeled mentally retarded, and ended up in a group home (at best), working menial jobs (at best), and probably not spoken about. Children not much more severe than my Joey would have been locked up in institutions and forgotten. Or perhaps a kid with Joey's communication issues could have been found a place on the farm, if he managed any form of communication enough to understand directions. If not- well, those farm kids probably ended up locked up, too- in institutions, in homes- like Boo Radley. Having enough receptive language to understand "muck out the stables," he might have gotten by and survived, scorned as the local idiot or weirdo. We have people walking around our town suffering this fate right this minute. Today. Is this the life I want for Joey? I see plenty of parents who do little to support their disabled kids. They refuse special education services. They send them to school, and trust the school to provide all the necessary therapies. They assume the state will take care of their child, help their child reach their potential. That's not even what schools do for non-disabled kids! I look at these kids, and glimpse echoes of what might Joey be like if I did the same. If I just went about my "normal" life, instead of what I do. I haven't seen any current outcome that is positive. None.
So I drive him to speech therapy. I drive him to occupational therapies. I work four jobs, so I can pay for them, and for the little ABA he gets. I take him with me all over town. I take him to the store. I take him to the farm. I take him to Williamsburg. I take him to the zoo. I take him to the beach.
It was almost two years ago when we last took Joey to the Aquarium in Baltimore. We went again yesterday. What a difference a couple of years can make. You might remember the disaster we had last time. Basically, meltdowns at every scale level throughout the day, but mostly in the 8-10 range. Dark, crowded rooms are not Joey's thing. This time, he had a blast. He loved the fish. He's very into fish right now. It can sometimes be hard to tell what Joey is really interested in, so I'm tickled to discover something he really likes, and isn't just saying he likes because other kids say they like it. He's very into the beach and sealife. Maybe he'll be a marine biologist! He looked into the tanks, and saw the fish, and pointed at them, and wanted Andy to see them, too. He laughed. He looked for Nemo and for Dory. We saw Dory-fish (blue tang). We saw sharks. We saw anemones.
Then we went to the dolphin show. It was far better than the show we saw before- and we sat in the splash zone. We got soaked. Andy freaked. Joey was ecstatic. He proudly proclaimed himself wet to anyone who would listen. He laughed and squealed with glee at the tricks, and wanted to get in the water and swim with the dolphins. He's been pretending to be a dolphin all afternoon today. How's that for success? Yes, he's growing up. That makes a difference. But he's also doing a lot of hard work, because he wants to know about the world, he wants to communicate with us, he wants to be in on the action of life. Did he blend in, look like other kids, act like other kids? No. No need for specifics. He's Joey, and he was Joey at the aquarium. But he was happy.
That's worth a lot of stress on my part. Modern life is still life, and I still think it is important for him to enjoy it.
Sunday, May 18, 2008
Friday, May 16, 2008
Strep
Step has come for a visit. Andy is snuggled on the couch, with his ice cream and juice and strawberries, watching some MSB and a bit of LB. I have a stack of games nearby, including his current favorites, Franklin and the Green Knight Game and Hi Ho Cherry-O.
If you ask him how he is, he sighs and says, "I'm sick."
Perhaps I'll get something cleaned this morning.
Or at least one boy good and squished.
If you ask him how he is, he sighs and says, "I'm sick."
Perhaps I'll get something cleaned this morning.
Or at least one boy good and squished.
Thursday, May 15, 2008
IEP success
Well, no one got strangled, the goals look pretty good, can't ask for much smoother than that.
Hey, we got to have some success around here, right?
Hey, we got to have some success around here, right?
Wednesday, May 14, 2008
IEP in the AM
We have our IEP tomorrow morning. The teacher has blocked out an hour for it. Ha. ha.
I did get the goals the teacher is going to propose. They look OK. Lots of social skills, expressive language, and attending, with some practical survival skills (such as knowing his address and what to do in an emergency) tossed in. Eleven goals. Hallelujah.
Just have to get through without thinking black thoughts about the school OT. If I can do that, this should be smooth as glass, complete with ESY.
Pray hard.
I did get the goals the teacher is going to propose. They look OK. Lots of social skills, expressive language, and attending, with some practical survival skills (such as knowing his address and what to do in an emergency) tossed in. Eleven goals. Hallelujah.
Just have to get through without thinking black thoughts about the school OT. If I can do that, this should be smooth as glass, complete with ESY.
Pray hard.
Continuing Discussion: Modern Fatigue
Abfh has responded to my earlier post about exhaustion, which was a response to another post of hers. Interested in the continuing discussion? Do check it out.
As usual, I don't absolutely agree with everything abfh says, but I think the points are excellent to ponder, and generally good basis for thinking about modern living with special needs. I don't think abfh discounts the realities of raising disabled kids- she does something far more constructive. She offers new ways to think about how we are thinking about our kids and about our neighbors.
I will probably be writing more on this, as I process new ideas and connect them with my own family and experience. Never fear.
As usual, I don't absolutely agree with everything abfh says, but I think the points are excellent to ponder, and generally good basis for thinking about modern living with special needs. I don't think abfh discounts the realities of raising disabled kids- she does something far more constructive. She offers new ways to think about how we are thinking about our kids and about our neighbors.
I will probably be writing more on this, as I process new ideas and connect them with my own family and experience. Never fear.
Stress is a funny thing
One thing about being a special needs parent is the constant attention it requires. I mentioned last time about not being able to just put the kids outside and fix dinner; in fact, not only an you not do that, but if you put the child outside, often you have to be out there engaging them. Children like Joey have few tools for entertaining himself. He cannot just think up something to do. Activities must be structured and organized for him to be able to participate. What will he do if I don't pay constant attention? Well, I found him in the middle of the street once. Screaming is popular. Tracking is a great favorite. That may be all fine and dandy, except that he gets frustrated with not being able to engage himself. Boredom is a terrible thing.
Another thing is the decided lack of sleep. I am not alone; most of the special needs parents I know suffer from the lack of sleep. I can't tell you the last time I slept four hours straight through. Children need covers adjusted. They need to crawl into bed with you. For other families, there are seizures to worry about, real sleep issues to deal with, medical procedures and medications to administer and all sorts of fun things in the night.
I've been seeing a lot of the doctor recently. Before Christmas, I had an episode of severe costochondritis, and it has persisted ever since. My asthma has returned with a vengeance. I have a bug bite that won't go away. I tried to lose some weight, and ended up gaining some instead (and I cannot afford to gain a single ounce!). Now I apparently have picked up PVCs. Think I have a little stress in my life?
So I now have some little pills. I am not fond of pills. No offense to other folks who take pills and find them a good thing, but I just feel like I've failed my little guys. I dropped the paper off at the pharmacy, I pick them up tonight. With all likelihood, I will stare at the bottle for a few days while my mom quizzes me twice a day about whether I've started them yet, I actually have an excuse to delay, because she also put me on allergy meds, and I have to make sure those won't have side effects before I can start the pills. Nothing I have done is enough. I have pills to get through my day.
Lovely.
Another thing is the decided lack of sleep. I am not alone; most of the special needs parents I know suffer from the lack of sleep. I can't tell you the last time I slept four hours straight through. Children need covers adjusted. They need to crawl into bed with you. For other families, there are seizures to worry about, real sleep issues to deal with, medical procedures and medications to administer and all sorts of fun things in the night.
I've been seeing a lot of the doctor recently. Before Christmas, I had an episode of severe costochondritis, and it has persisted ever since. My asthma has returned with a vengeance. I have a bug bite that won't go away. I tried to lose some weight, and ended up gaining some instead (and I cannot afford to gain a single ounce!). Now I apparently have picked up PVCs. Think I have a little stress in my life?
So I now have some little pills. I am not fond of pills. No offense to other folks who take pills and find them a good thing, but I just feel like I've failed my little guys. I dropped the paper off at the pharmacy, I pick them up tonight. With all likelihood, I will stare at the bottle for a few days while my mom quizzes me twice a day about whether I've started them yet, I actually have an excuse to delay, because she also put me on allergy meds, and I have to make sure those won't have side effects before I can start the pills. Nothing I have done is enough. I have pills to get through my day.
Lovely.
Monday, May 12, 2008
Special Needs Parents: Where is my bed?
I've been mulling a post from abfh, which is something I do a lot, because she has lots of interesting things to say and insights to share. This one, in case you didn't click on the link, is about autism parents. The study is about how parents of autistic kids have a higher rate of neurological conditions than other parents- including depression. The good news was that only 1.8% of the mothers of autistic kids were diagnosed with depression. As she so correctly put it: "Contrary to the widespread stereotype of the suicidal, emotionally devastated autism parent, these families with autistic children were enjoying their lives just like other families. The fathers were no more likely to be depressed than any other fathers, and more than 98% of the mothers did not suffer from depression."
Why have I been mulling this? Because I have a problem. Something is wrong here.
A great many of the parents I know- particularly the mothers- have special needs children. Not just autistic children, either: Down Syndrome, hydrocephalus, cerebral palsy, ADHD, ODD, and a peppering of other disabilities, defined or specialized or what have you. Perhaps the vast majority of us are not diagnosed with depression. I suppose that would be correct.
But we are all, to a [wo]man, very, very, tired.
Exhaustion lurks around every corner, haunts every house, lingers in the corners and hangs in the air; exhaustion on a level I do not see in homes without special needs children, exhaustion I never see etched on the faces of mothers with no disabled children. In other homes, in other parents, there is a laugh-it-off: jokes about having drinks are lighter-hearted, comments about bad days are less edged, giggles about sleep depravation are followed eventually by a nap or a day at the spa.
What is even more interesting is that we seem less permitted to be tired. We have to attend more meetings, talk with more teachers, run around to more therapies, and meet more needs. Many of us can't just tell the kids to go out an play while we fix dinner. Every moment is a teaching moment, every chore a lesson in life skills. Many parents doubtless think nothing of having their child dress in the morning, come down to breakfast, eat their food, put on their coat and backpack, and get on the bus. For many families I know, each step of that process must be carefully choreographed, supervised, assisted, broken into smaller steps and specifically taught. The process of choosing clothes alone is actually a multistep process involving visual discrimination, sensory processing, motor planning, dexterity and coordination... and several other skills most people take for granted. All of these things have to be broken down and taught to many of our kids. And I'm not talking preschoolers here. I know several families directly with teenagers dealing with these issues- and know of several more families in the system. We have no time to be tired. Our babies are counting on us not to be tired.
Exhaustion and stress are funny things. They are not depression, though they can lead to depression. You can be depressed without being diagnosed as such. I had a therapist I was seeing for "mood disorders" before I had Joey who, upon hearing his diagnosis, suggested changing my own diagnosis to depression (I stopped seeing that therapist). Having thoughts of suicide and driving off a bridge with your child would, I think, be seriously in the running for "depression." However, it's not the only outcome, and if I was having such thoughts, I would certainly be running- not walking- to the nearest psychiatric office for help.
Exhaustion leads to other problems. Sleep issues. Eating issues. Mood issues. Things that just get brushed aside as stress, as exhaustion, as "oh, you're a mom, that's the way it is! Hahaha!" Things that get laughed off as "put down the cheeseburger, lady, and go for a walk!" Things that get ignored as "boy, you should take a nap/go on vacation/hire a respite worker for a bit" as if you had time/money to do these things. As if an hour once a month did anything for the kind of exhaustion I am talking about. Or even once a week.
And it isn't just 1.8% of the special needs families I see with this exhaustion thing. It is 100%. I suppose there could be whole cities somewhere elsewhere with special needs families who are not exhausted. I'd like to meet some. I bet they'd have a lot of ideas to share with this little town- and we'd be all for them.
Why have I been mulling this? Because I have a problem. Something is wrong here.
A great many of the parents I know- particularly the mothers- have special needs children. Not just autistic children, either: Down Syndrome, hydrocephalus, cerebral palsy, ADHD, ODD, and a peppering of other disabilities, defined or specialized or what have you. Perhaps the vast majority of us are not diagnosed with depression. I suppose that would be correct.
But we are all, to a [wo]man, very, very, tired.
Exhaustion lurks around every corner, haunts every house, lingers in the corners and hangs in the air; exhaustion on a level I do not see in homes without special needs children, exhaustion I never see etched on the faces of mothers with no disabled children. In other homes, in other parents, there is a laugh-it-off: jokes about having drinks are lighter-hearted, comments about bad days are less edged, giggles about sleep depravation are followed eventually by a nap or a day at the spa.
What is even more interesting is that we seem less permitted to be tired. We have to attend more meetings, talk with more teachers, run around to more therapies, and meet more needs. Many of us can't just tell the kids to go out an play while we fix dinner. Every moment is a teaching moment, every chore a lesson in life skills. Many parents doubtless think nothing of having their child dress in the morning, come down to breakfast, eat their food, put on their coat and backpack, and get on the bus. For many families I know, each step of that process must be carefully choreographed, supervised, assisted, broken into smaller steps and specifically taught. The process of choosing clothes alone is actually a multistep process involving visual discrimination, sensory processing, motor planning, dexterity and coordination... and several other skills most people take for granted. All of these things have to be broken down and taught to many of our kids. And I'm not talking preschoolers here. I know several families directly with teenagers dealing with these issues- and know of several more families in the system. We have no time to be tired. Our babies are counting on us not to be tired.
Exhaustion and stress are funny things. They are not depression, though they can lead to depression. You can be depressed without being diagnosed as such. I had a therapist I was seeing for "mood disorders" before I had Joey who, upon hearing his diagnosis, suggested changing my own diagnosis to depression (I stopped seeing that therapist). Having thoughts of suicide and driving off a bridge with your child would, I think, be seriously in the running for "depression." However, it's not the only outcome, and if I was having such thoughts, I would certainly be running- not walking- to the nearest psychiatric office for help.
Exhaustion leads to other problems. Sleep issues. Eating issues. Mood issues. Things that just get brushed aside as stress, as exhaustion, as "oh, you're a mom, that's the way it is! Hahaha!" Things that get laughed off as "put down the cheeseburger, lady, and go for a walk!" Things that get ignored as "boy, you should take a nap/go on vacation/hire a respite worker for a bit" as if you had time/money to do these things. As if an hour once a month did anything for the kind of exhaustion I am talking about. Or even once a week.
And it isn't just 1.8% of the special needs families I see with this exhaustion thing. It is 100%. I suppose there could be whole cities somewhere elsewhere with special needs families who are not exhausted. I'd like to meet some. I bet they'd have a lot of ideas to share with this little town- and we'd be all for them.
Rain
We're being barraged here by rain. It's nice to have some, since we've had drought for the last several years running, and no real hurricanes up the coast to bring water. The run-off is far worse than before- al the new asphalt and house seed- but hopefully some of it will get to the aquafers. One can hope.
So a week after an exciting beach weekend, the boys spend Mom's Day Weekend stuck in the house. It's been chilly rain, so going out in it is a definite no. Besides, there are echoes of coughs haunting the night here. Just what we'd need is full-blown spring colds.
We are also entering IEP season here. Well, when it rains, it pours, right? I ran into school to have a quick "pre-IEP meeting" with Joey's teacher, so that she's be aware of things we are concerned about. I think she's learned quick that I do not like surprises at IEP meetings. It was an interesting chat, partly because we were trying to figure out what the school OT could possibly do given her limited skills set, and partly because I got another glimpse of the kinds of things he does at school that he doesn't do for me. Like get his shoes and socks on. Make choices. Voice favorites.
I am looking forward to Joey spending more time in an inclusion room, even for just the more focused activities like reading groups and math circles. We're going to start him in there with the reading group, and then add the math around Christmas. I think we're looking for lots of expressive speech goals, attending goals, social skills, and sensory self-regulation. Things to make him successful in school, and in getting on in the world.
In the meantime, a house has come available down the street that has a basement apartment and a mother-in-law house. Its a bit out of range for us right now, but I thought I might take a peek anyway. Just in case. One must think of possible futures, and with Joey's severe communication issues, we may need the space for him in the long term.
So a week after an exciting beach weekend, the boys spend Mom's Day Weekend stuck in the house. It's been chilly rain, so going out in it is a definite no. Besides, there are echoes of coughs haunting the night here. Just what we'd need is full-blown spring colds.
We are also entering IEP season here. Well, when it rains, it pours, right? I ran into school to have a quick "pre-IEP meeting" with Joey's teacher, so that she's be aware of things we are concerned about. I think she's learned quick that I do not like surprises at IEP meetings. It was an interesting chat, partly because we were trying to figure out what the school OT could possibly do given her limited skills set, and partly because I got another glimpse of the kinds of things he does at school that he doesn't do for me. Like get his shoes and socks on. Make choices. Voice favorites.
I am looking forward to Joey spending more time in an inclusion room, even for just the more focused activities like reading groups and math circles. We're going to start him in there with the reading group, and then add the math around Christmas. I think we're looking for lots of expressive speech goals, attending goals, social skills, and sensory self-regulation. Things to make him successful in school, and in getting on in the world.
In the meantime, a house has come available down the street that has a basement apartment and a mother-in-law house. Its a bit out of range for us right now, but I thought I might take a peek anyway. Just in case. One must think of possible futures, and with Joey's severe communication issues, we may need the space for him in the long term.
Thursday, May 08, 2008
Missed
In all the bumbling and fumbling these last two weeks, our special ed director decided to change the date of the next Parent Advisory Committee meeting. The problem was that he needed us to look over the upcoming budget before presenting it to the school board, and the board meeting was this coming Tuesday, and our next scheduled meeting was this coming Thursday. Apparently he emailed me a couple weeks ago about this, and I missed that message; then I emailed folks to ask when our meeting was scheduled, since I had forgotten to write it down, and was trying not to change the date on everybody. It finally got changed to today, 7pm.
Of course, today was a very bad day. That's why we didn't schedule it originally for today. Allan is out of town, so my attendance was a no-go. People had soccer games. Final exams. Doctor appointments. Child-care arrangements. There was a reason we didn't schedule it for today.
I live in the south. Not the deep south, but I am south of the Rappahannock, so it counts. For those of you unfamiliar with the ways of southern life and ladies, there is a tradition of being slightly vague in our language. Instead of saying "no," we say, "I'd rather not" or "wouldn't this be better?" Instead of saying "I am going to bring a tape recorder to this meeting," we say "Do mind if I bring a recorder to the meeting?" So "I probably can't come, honey" is the polite way of saying "Do not expect me to come." More directly, for you real northerners or literal-minded folks, the translation is, "I am not coming."
When I sent around messages about the meeting, I made sure to include my polite notice that I was unable to attend on such short notice. Now, I probably could have gotten my mom to watch the boys, that wasn't really the issue; my real issue was just coming off of grading and two weeks of no husband and a variety of other stressors, and I just couldn't deal with the stress of dealing with folks who haven't bothered to show up for meetings all year suddenly asking/demanding that one be rescheduled, knowing there would be complaints about short notice from parents and about lack of attendance from the people who hadn't been attending. But almost all of my messages included something to the effect of "I probably can't come."
At 7:15pm, I had two small boys in the bathtub reciting their new favorite chant (neeeee....kid.... BwuUTS!!!) covered in bubble beards and bubble "snow", while I tracked down appropriate sleep clothes and underwear. The phone rings. Without looking or answering, I just knew who it was. Yep. You guessed it.
"We're waiting for you to start the meeting!" came the pleading voice from the other end of the line. Waiting for someone who is probably not coming? Why? Even if taken literally, I would think such a phrase would deter you from awaiting a person who is probably not coming.
I now have an email from a parent who went to go to the meeting, and couldn't find it. Another parent who didn't go at all. Two of the other parents couldn't go from the get-go. And I was out of action. That leaves three regulars, and I have no idea if they went or not.
Looking into my crystal ball, I foresee more long, whiny diatribes about how parents don't participate enough.
Of course, today was a very bad day. That's why we didn't schedule it originally for today. Allan is out of town, so my attendance was a no-go. People had soccer games. Final exams. Doctor appointments. Child-care arrangements. There was a reason we didn't schedule it for today.
I live in the south. Not the deep south, but I am south of the Rappahannock, so it counts. For those of you unfamiliar with the ways of southern life and ladies, there is a tradition of being slightly vague in our language. Instead of saying "no," we say, "I'd rather not" or "wouldn't this be better?" Instead of saying "I am going to bring a tape recorder to this meeting," we say "Do mind if I bring a recorder to the meeting?" So "I probably can't come, honey" is the polite way of saying "Do not expect me to come." More directly, for you real northerners or literal-minded folks, the translation is, "I am not coming."
When I sent around messages about the meeting, I made sure to include my polite notice that I was unable to attend on such short notice. Now, I probably could have gotten my mom to watch the boys, that wasn't really the issue; my real issue was just coming off of grading and two weeks of no husband and a variety of other stressors, and I just couldn't deal with the stress of dealing with folks who haven't bothered to show up for meetings all year suddenly asking/demanding that one be rescheduled, knowing there would be complaints about short notice from parents and about lack of attendance from the people who hadn't been attending. But almost all of my messages included something to the effect of "I probably can't come."
At 7:15pm, I had two small boys in the bathtub reciting their new favorite chant (neeeee....kid.... BwuUTS!!!) covered in bubble beards and bubble "snow", while I tracked down appropriate sleep clothes and underwear. The phone rings. Without looking or answering, I just knew who it was. Yep. You guessed it.
"We're waiting for you to start the meeting!" came the pleading voice from the other end of the line. Waiting for someone who is probably not coming? Why? Even if taken literally, I would think such a phrase would deter you from awaiting a person who is probably not coming.
I now have an email from a parent who went to go to the meeting, and couldn't find it. Another parent who didn't go at all. Two of the other parents couldn't go from the get-go. And I was out of action. That leaves three regulars, and I have no idea if they went or not.
Looking into my crystal ball, I foresee more long, whiny diatribes about how parents don't participate enough.
Wednesday, May 07, 2008
Sunday, May 04, 2008
Back from the beach
We're back! I know lots of people just rave about Virginia Beach, but I have to admit myself... disappointed. I'm sure it's great if you can afford a nice room in one of those fancy new places on that boardwalk and already know which are the good dives, and your favorite thing is to bake to medium-well in the summer sun. However, for a nice little daytrip from somewhere else, I saw nothing to entice me back. Parking was horrible and expensive, with a long walk to the actual sand. All of the boardwalk places looked alike- no character, nothing special, all chains (or too sterile to make any nevermind), shops were packed with bikes to rent, to the point you couldn't see what was for sale (if you could park close enough to go into a shop at all.) Forget something when you're on the sand? There's hardly any shops or anything on the boardwalk itself- you have to walk another block, through tunnels through the fancy hotels, to get to anything. There was one shop on the board near our stretch of sand- and it was quite a hike. No others in sight, up or down the walk. You have to cross the bike road to get to the sand at all, and hope you don't get run over, all day long. I saw a few glimpses of character left- only one of the once-ubiquitous haunted houses, for example. But mostly its been knocked down and rebuilt into Anybeach, USA. Inconvenient Anybeach.
The beach itself was OK, but not great. The sand was full of straw for some reason, and hadn't been sifted at all, so there was a lot of trash debris. I know some folks want the sand to be white, but to me, sand is yellow, and Virginia Beach is yellow, so no biggie there. There was a good number of people, but it could have been worse. No shells, but then, OC doesn't have shells anymore, either. That was one thing I remember from California that was so wonderful- you could really collect seashells. Not just shell scraps and bits, but whole shells. Very cool. The boys did well in the surf, and had a grand time. We let them run about until they were tired enough to volunteer to leave. Joey immediately regretted his decision and spent the rest of the trip trying to convince us to return to the surf.
We were impressed by the Virginia Zoo. The main part of the zoo is open and the animals are more free-range, so they wander about and seem very happy. The lion area has windows right on the level with the cats, so they are walking right at you! Even with so much torn up, being remodeled, built,and rebuilt, there was plenty to see. 
My sunglasses turned out to be the big hit of the trip, though. Very fashionable.All in all, and my apologies to Va Beach fans, but we saw no reason to go back. Its fine if, like this trip, we're down there for other reasons and want something to do, but as a destination?
We'll take Ocean City, all the way.
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