From the article about the police report on teh Alex Barton incident:
"...Portillo and children in the class said Alex was pushing a table up with his feet while he was under the table. She got the school resource officer to remove Alex from the classroom. It was the second discipline referral for Alex that day, the report said.
Portillo told the officer after he left the classroom with Alex, she talked with the other children.
“Portillo said she explained to them that the students in class were all her priority and she would protect them like a ‘bear defending her cubs,’” the report said.
When Alex returned to the class, Portillo said she and the class were not ready for him to return.
Portillo told the officer she asked Alex to join her at the front of the class. ..."
This makes it so crystal clear to me, the whole crux of this situation. Wendy Portillo's class children were her priority, and she was willing to protect her kids like a mama bear... except Alex. He didn't count. He was an outsider, an invader, an interloper. Knowing full well that he was in the process of being placed into special education with a pervasive developmental disability, instead of protecting him, she threw him out. Instead of talking to her children about inclusiveness, tolerance, and support for a classmate who was clearly having a hard time, she had them tell him to his face what they thought of him, and threw him out.
The students in her class were not "all her priority." Only the ones she thought deserved to be. Those others, though assigned to her classroom, are aliens. Disturbances.
Other.
Many of us are working hard to get our kids included, and so this strikes a hot nerve. Will our kids be supported and accepted into the community, or forever ostracized as "other"? Will they count as one of the students, or be thrown own to fend for themselves? Incidents such as these point to an alarming, heart-wrenching answer. As long as these kinds of incidents continue- often more subtle than the case of Alex Barton- we fear for our kids, and know the road ahead is long.
Friday, May 30, 2008
The Megan Pledge
I invite you all to take the Megan Pledge and check out the STOP cyberbullying website.
➢ I agree to take a stand against cyberbullying, including sharing this pledge with others and asking them to take it, too.
➢ I agree not to use technology as a weapon to hurt others.
➢ I agree to “Think Before I Click.”
➢ I agree to think about the person on the other side.
➢ I agree to support others being cyberbullied and report cyberbullying whenever I find it.
➢ I agree not to join in cyberbullying tactics or be used by cyberbullies to hurt others.
➢ I agree to “Stop, Block, and Tell” when I am being targeted by a cyberbully and to “Take 5!” to help me calm down and walk away from the computer.
➢ I agree to be part of the solution, not part of the problem.
Oh, and here's the latest on Alex Barton: Wendy Portillo's side of the story. No surprise, she didn't see anything wrong with what she did, or in taking a vote of student to toss Alex from the class (even just for the day). I recommend reading the article, we need all sides of the story we can get!
Thursday, May 29, 2008
The Crazy Season
Yes, IEPs are upon us. Thank GOD ours is over, and went smooth as glass. We'll keep our eyes open and be our usual little IEP-Meeting-Calling owls all year, but for now, the Big One is done. For a lot of folks, it is about to begin.
And so I offer here my Helpful Guide to IEP Season. Please just add your own tips in the comments- what helped you?
1. Know your child. Most years, we have actually put together a Powerpoint presentation outlining who Joey is, our big picture long-term goals, strengths, weaknesses, and our suggestions for goals. We stud it with pictures and movie clips, so that Joey is not just a name on a piece of paper being shuffled around a table. He becomes a real person, and the focus remains on his needs and success. Yes, the staff will groan when you show up with your laptop and presentation. Show it. Do it first.
2. Read From Emotions to Advocacy. If you haven't done that, and you have an IEP coming, go do that now. Really. Step away from the computer and go read it.
3. Get your stuff together. Since you did your homework and read From Emotions to Advocacy, you know to go out an buy a big binder, and put everything in it. Get a few binders. You may need a new one each year. Lots of paper is pushed in special ed.
4. Know what you want. This is probably the hardest, because who comes into this an expert on their kid's disability? It is worth becoming one. Short on time? If you have an autistic child, I recommend looking into physical therapy, occupational therapy, and speech therapy. Know what these fields do, and how they might benefit your child. Next, look up teaching strategies, such as ABA, floortime, TEACCH, pivotal response training, etc. and consider how they might (and might not) help your child. Ask if the teachers are familiar with these strategies. Then, look up sensory integration and sensory perception, and ask about sensory integration, sensory diet, and sensory accommodations. Are the staff trained to deal with sensory issues? What accommodations can they recommend?
5. Take someone with you. I have found having private therapists at the meeting makes a big difference- you have folks there on your side, paid to look after the interests of your child, with professional expertise to make educated and appropriate suggestions. Other people like other parents, or even hire professional advocates. Stack the team in favor of your child. If you have any inklng of doubt that your school personnel are not going to be batting for your child, get the room full of people whose only concern is your child's success and wellbeing.
6. Bring a tape or digital recorder. Record the entire meeting. Most districts require written notice that you will be doing this. Dear Sir/Madam: I am writing to inform you that I will be audiorecording the meeting on (date) in order to have a full record of (child)'s educational planning process. Yours, (You).
7. Don't panic. You don't have to sign the IEP the day of the meeting- take it home, look it over, take it to your private team. No worries. Even if you sign it, you can call a new meeting and change it.
Thats my advice to our new and near-new parents. I'm not too far from newbie-dom myself, so as I said before, comments are open. Advice is greatly appreciated.
And so I offer here my Helpful Guide to IEP Season. Please just add your own tips in the comments- what helped you?
1. Know your child. Most years, we have actually put together a Powerpoint presentation outlining who Joey is, our big picture long-term goals, strengths, weaknesses, and our suggestions for goals. We stud it with pictures and movie clips, so that Joey is not just a name on a piece of paper being shuffled around a table. He becomes a real person, and the focus remains on his needs and success. Yes, the staff will groan when you show up with your laptop and presentation. Show it. Do it first.
2. Read From Emotions to Advocacy. If you haven't done that, and you have an IEP coming, go do that now. Really. Step away from the computer and go read it.
3. Get your stuff together. Since you did your homework and read From Emotions to Advocacy, you know to go out an buy a big binder, and put everything in it. Get a few binders. You may need a new one each year. Lots of paper is pushed in special ed.
4. Know what you want. This is probably the hardest, because who comes into this an expert on their kid's disability? It is worth becoming one. Short on time? If you have an autistic child, I recommend looking into physical therapy, occupational therapy, and speech therapy. Know what these fields do, and how they might benefit your child. Next, look up teaching strategies, such as ABA, floortime, TEACCH, pivotal response training, etc. and consider how they might (and might not) help your child. Ask if the teachers are familiar with these strategies. Then, look up sensory integration and sensory perception, and ask about sensory integration, sensory diet, and sensory accommodations. Are the staff trained to deal with sensory issues? What accommodations can they recommend?
5. Take someone with you. I have found having private therapists at the meeting makes a big difference- you have folks there on your side, paid to look after the interests of your child, with professional expertise to make educated and appropriate suggestions. Other people like other parents, or even hire professional advocates. Stack the team in favor of your child. If you have any inklng of doubt that your school personnel are not going to be batting for your child, get the room full of people whose only concern is your child's success and wellbeing.
6. Bring a tape or digital recorder. Record the entire meeting. Most districts require written notice that you will be doing this. Dear Sir/Madam: I am writing to inform you that I will be audiorecording the meeting on (date) in order to have a full record of (child)'s educational planning process. Yours, (You).
7. Don't panic. You don't have to sign the IEP the day of the meeting- take it home, look it over, take it to your private team. No worries. Even if you sign it, you can call a new meeting and change it.
Thats my advice to our new and near-new parents. I'm not too far from newbie-dom myself, so as I said before, comments are open. Advice is greatly appreciated.
Wednesday, May 28, 2008
Alex Barton update 2
Today's latest on Alex Barton.
And it is definitely worth going over and seeing what Mom-NOS has to say.
And it is definitely worth going over and seeing what Mom-NOS has to say.
A Day at the Doctor's
Some folks go to spas to get away from the kids. I hear cruises are nice breaks. Maybe an afternoon at the beach. Not me. I go to the cardiologist.
We checked out the PVCs today. An EEG and a nuke stress test. It was actually very nice, except for the IV (but the phlebotomist was fabulous, got in the first time!) and the running on the treadmill (they were having a hard time getting my rate to go up, because I've been going to the gym). We won't have official word on what the tests say until the 6th, but the initial outlook is...
Drum roll, please...
You know what's coming, right?
STRESS.
Yeah, you knew it, smarty. The nurse practitioner was a stitch. She's looking at the read outs as they are coming out of the machine and the monitors and stuff, and telling me its probably not a blockage (yay!), and then starts asking me if I drink coffee. Or tea. Or eat a lot of chocolate. Do I smoke? No. No. No. (I told her I've been drinking more Diet Coke lately, but she said you have to drink a LOT of diet coke to consume enough caffeine to cause this- though she did say "It wouldn't hurt to knock it off, anyway! It's not good for you.") So then she smiles knowingly, cocks her head, and says, "Soooooo.... tell me about the stress in your life." A quick rundown of a typical day at my house is quite enough. The fact that we haven't been having a lot of "typical" days, but a whole lot of other emergencies and incidents and events, and... well, stress is a funny thing.
We'll see what the doctor says next Friday.
We checked out the PVCs today. An EEG and a nuke stress test. It was actually very nice, except for the IV (but the phlebotomist was fabulous, got in the first time!) and the running on the treadmill (they were having a hard time getting my rate to go up, because I've been going to the gym). We won't have official word on what the tests say until the 6th, but the initial outlook is...
Drum roll, please...
You know what's coming, right?
STRESS.
Yeah, you knew it, smarty. The nurse practitioner was a stitch. She's looking at the read outs as they are coming out of the machine and the monitors and stuff, and telling me its probably not a blockage (yay!), and then starts asking me if I drink coffee. Or tea. Or eat a lot of chocolate. Do I smoke? No. No. No. (I told her I've been drinking more Diet Coke lately, but she said you have to drink a LOT of diet coke to consume enough caffeine to cause this- though she did say "It wouldn't hurt to knock it off, anyway! It's not good for you.") So then she smiles knowingly, cocks her head, and says, "Soooooo.... tell me about the stress in your life." A quick rundown of a typical day at my house is quite enough. The fact that we haven't been having a lot of "typical" days, but a whole lot of other emergencies and incidents and events, and... well, stress is a funny thing.
We'll see what the doctor says next Friday.
Tuesday, May 27, 2008
Alex Barton Update
Just the latest on Alex Barton- they "reassigned" his teacher. It will take two weeks for the district to "complete its investigation" by which I hope they mean "put together the paperwork we need to fire her butt." But we'll see.
Heroes
When I was young, my mom did lots of things to make sure my brother and I were raised, instead of just growing up. She got up and made us breakfast every day. She made dinners. Every day, the floors were vacuumed and mopped, the furniture dusted, and often the bathrooms scrubbed. I remember being sick from school, watching her work. On top of that, she did other jobs during the day, running errands, fixing things, needful projects. And she volunteered for school. As I got older, she volunteered elsewhere, too. She took us to the Smithsonian on weekends (when I was very little, we lived in PG County. When we got older, we kept going, just not as often.) She had watercolor paints, or playdough, or clay, or other projects for us to do. We spent a lot of time in the kitchen when I was the age of my boys. When we got older, we spent a lot of time out in the woods.
I wish I was more like my mom. My kids eat an awful lot of hot dogs and not enough pot roast (even with my crockpot, which my mom didn't have). My house? Disaster city. I have lots of materials for projects. They spend a lot of time in boxes or plastic bins. I have a "to do" of needful projects a mile long. My vacuum cleaner spends weeks in silence in the back hall (not even the closet where it belongs).
But I do my best. And one thing my mom taught me is that if you have the opportunity to try something new, try it. If an elephant presents itself, climb on its back. I think Joey is picking up on the lesson quite well- and trying new things is a great strength to have.
Thanks, Mom.
Sunday, May 25, 2008
Come into my garden!
I have set up a new blog for pictures of the garden. So if you'd like a view of my roses, feel free to check it out.
Saturday, May 24, 2008
Alex Barton
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
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
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.
Subscribe to:
Posts (Atom)
