We have a new, wonderful game here- Playing Cars. Joey gets out the little road/runway thing that came with a Fisher Price airport, finds some of his cars, and then gives one to Mommy saying, "Come play cars, Mommy!"
Intiiating social interaction. Appropriate language, appropriate play. And he's figured out that if he does this, the world stops and Mommy gets onto the floor and plays cars, even if she was cooking or working or doing some other thing Joey prefers I didn't do. Andy grabs a car, and there are the three of us, crashing cars together, or racing them, or just driving them around and getting our arms all tangled.
Sometimes the cars even talk to each other. Joey stops his car in front of my car and says, " Hello car, I'm Joey!" and Joey the Car makes a new friend.
Now that, my friends, is a miracle.
Sunday, June 03, 2007
When to speak- what to say
I have two very important opportunities to advocate generally for autistics. I am the chair of the Parent Advisory Committee for our local special ed system, and I am also on the committee that is supposed to be training school personnel about autism. No one who is actually autistic is on either of these committees, yet both have a good deal of power over the lives of autistic children, and even some autistic adults (special ed can rule your life until you turn 23).
I have a friend who was appointed the chair of his department. He took it as the huge honor, that everyone must think so much of him. Itried my best to tell him that being chair of a department is not an honor- it often rotates like a hot potato among faculty members- it is an opportunity. You have your chance to do things your own way, to get your own ideas heard, to get things you think are important on the agenda.
Being chair of the advisory committee and being on this autism training committee are similarly opportunities. I can stand in front of the school board, the superintendant, the director of student services, the principals, the teachers, and say anything I want. Here is an opportunity- and a rsponsibility, What do I say? When do I say it?
So far, my message has been "disabled people are, first and foremost, people." When asked about curing autism and what stance the school should take regarding autism, this has been my answer: Autistic people are people. Treat them with the same respect you expect to receive. They have the same right to be educated that any non-autistic child has. They need the same opportunity to be independent and socially responsible that any non-disabled child has. If a normal child had trouble in reading, you'd provide tutoring, right? So what's the problem with providing the support a disabled child needs to succeed?
This message seemed to be supported by autistic people I knew in person, and was certainly supported by the other parents I know in the system (though admittedly, both are not extensive groups of people, and may not be respresentative.) This is the best I could do... until now.
And now I ask you... now that I have readers who are autistic, raising autistic children, been through the special ed system, and have a wide variety of persepctives of the message to send- if you have the ear of of all the powers-that-be of the school system, what would you say? (Politely, that is?)
I have a friend who was appointed the chair of his department. He took it as the huge honor, that everyone must think so much of him. Itried my best to tell him that being chair of a department is not an honor- it often rotates like a hot potato among faculty members- it is an opportunity. You have your chance to do things your own way, to get your own ideas heard, to get things you think are important on the agenda.
Being chair of the advisory committee and being on this autism training committee are similarly opportunities. I can stand in front of the school board, the superintendant, the director of student services, the principals, the teachers, and say anything I want. Here is an opportunity- and a rsponsibility, What do I say? When do I say it?
So far, my message has been "disabled people are, first and foremost, people." When asked about curing autism and what stance the school should take regarding autism, this has been my answer: Autistic people are people. Treat them with the same respect you expect to receive. They have the same right to be educated that any non-autistic child has. They need the same opportunity to be independent and socially responsible that any non-disabled child has. If a normal child had trouble in reading, you'd provide tutoring, right? So what's the problem with providing the support a disabled child needs to succeed?
This message seemed to be supported by autistic people I knew in person, and was certainly supported by the other parents I know in the system (though admittedly, both are not extensive groups of people, and may not be respresentative.) This is the best I could do... until now.
And now I ask you... now that I have readers who are autistic, raising autistic children, been through the special ed system, and have a wide variety of persepctives of the message to send- if you have the ear of of all the powers-that-be of the school system, what would you say? (Politely, that is?)
Another Article to Check Out
Have multiple autistic kids? There's no volume discount for therapy.
I still joke at the office where we get speech and OT for Joey that they need to get me a recliner- or better, a cot. And I only have one...
I still joke at the office where we get speech and OT for Joey that they need to get me a recliner- or better, a cot. And I only have one...
Saturday, June 02, 2007
Depression
This is one of my favorite pictures of my Joey.
The image is one that I draw up when things get especially hard. When we've had a screamy day and the school people are blowing me off and ETS isn't giving me enough work to pay the bills and friends are in troubled waters and the world seems to be spinning a little faster than usual. I've mentioned this picture elsewhere, on occasional comments on other blogs, it seems to be getting mentioned a lot lately. So here it is. The Image.
The large, round one is me. That's me, writing my dissertation. And that's my baby boy, fast asleep on me. He loved to sleep on me. He still likes a good snuggle.
When I was writing that dissertation, my world was very different. I knew where I was going and how I was going to get there, more or less. I had trained hard to be an academic. I would spend lovely jaunts in India looking at wonderful sites and objects, gain an understanding of how people lived, communicated, understood the world around them and expressed that understanding to each other. I would bring back presents that would make my little guy laugh and wonder about people who were different from him, who saw the world differently, who valued diferent things and dreamed different dreams. I would teach my little boy that there was more than one way to think about a problem, a pleasure, an experience; that there was more than one solution, more than one explanation, and these different ways of thinking, feeling, understanding could be tools for making his own sense of the cosmos. I would write wonderful books about people and the objects they made, the survivals of time and weather and cultural storm. I would stand in classrooms and share these visions and ideas with other young minds, and see where they could take thee ideas, what new thoughts could arise just by thinking in a new way, or from a new point of view. Yes, I was going somewhere. I was young. I'm still young for a PhD. I was ready. I had my dream in my pocket, and needed only for time to open out and unfold the events, so they could be savored, shared, and then committed to fond memory.
Academia is a funny place, especially if you're fool enough to take up an obscure field. The whole publish or perish thing is just one facet of the trouble. Children are a big no-no in most departments. Having a family is something reserved for folks in areas more popular with students (and therefore the faculty are in higher demand, and more allowances are made). Teaching experience can actually count against you; it only counts for you if you are also a prolific publisher. What prestige and funds will you bring to the college? That is the question. How many butts will you put into seats? How many donors are at your beck and call? Good teaching be damned, its all about the research. You don't have to be a good writer, you just have to be a published one. Quantity is far more important than quality.
I have a friend who is faculty over at the college while raising an Asperger's child. She's got the full-time gig. Her husband is also a prof. They both do an elaborate juggling act to be sure the children are supervised while they do their research, write their articles, teach their classes. It helps to be in subjects where travel is not a big deal. You can study English quite well without ever setting foot in England. Being full-time gives you more control over the schedule. I often stop to admire how well that family works together as a team to be sure things happen. The flexibility of the schedule is key- there is no way to maneuver through schedules of buses and therapists and hold a full-time, regular-hour job here. Respite and childcare that can handle an ASD child (or even WILL handle one) is practically non-existant without a medicaid waiver. I admire her greatly. She finds time to do her job, expand her work, and advocate for her son. That's a true wonder.
I hadn't secured a full-time gig before I had my guys. I'm an adjunct, when the local schools have money. I grade standardized tests, too, which is the best-paying gig I've got. There's been no time for much research, with running the guys to their appointments. I'm lucky if I get to shower. Trips to India? That's a laugh.
Back to the photo. A dissertation to nowhere. Such is the world I lost when I decided to be an advocate for my son. Not all parents make the choice I made. In fact, I find it disconcerting how few take up the challenge to support and advocate, and instead toss their kid at the school and say "fix it" then disappear. The ones that take up the challenge are always people of strength, fortitude, and often, attitude. Fighting everyone around you all the time is not for the faint-of-heart or weak-of-stomach. All the parents I know who are actually in there pitching are absolutely amazing people. I do my best to be like them. Such is the world I gained.
So this is also an image of what I gained in my life. I have a beautiful son. I hug him close whenever I get the chance. Boys tend to reach a point when they don't want hugs and kisses from Mommy anymore, so I get them in now while I can. Here is an image of the joys of being alive, the comforts of having my baby with me, my little buddy through thick and thin. Even on screamy days, he's my baby.
If I hold really still and think of this image, I can still feel the warm weight of him on my chest and belly, the little hand pulling on my shirt as it clutches at a button, the curve of a diapered bottom in my palm, the soft fuzz of hair, the even breathing sweet with milk. I could tip my head and kiss the top of his, lay my cheek against that little forehead and be instantly in heaven. One little nuzzle and the thoughts would untangle, the words arrange themselves according to thoughts, and sometimes the hand could keep up.
Did I give up my life? I admit there are some moments I wonder if I did. I certainly turned away from the world that was, and entered a whole differnt way of existing, and began to evolve a whole new way of thinking about the world, the cosmos, and my own place in it. Perhaps that is why Welcome to Holland speaks so well to me. I still have moments when I wonder what could-have-been. That old Two Roads in the Wood thing. Don't you ever wonder what was down that well-traveled lane? Even while you appreciate the wonders of the road you have actually taken?
The image is one that I draw up when things get especially hard. When we've had a screamy day and the school people are blowing me off and ETS isn't giving me enough work to pay the bills and friends are in troubled waters and the world seems to be spinning a little faster than usual. I've mentioned this picture elsewhere, on occasional comments on other blogs, it seems to be getting mentioned a lot lately. So here it is. The Image. The large, round one is me. That's me, writing my dissertation. And that's my baby boy, fast asleep on me. He loved to sleep on me. He still likes a good snuggle.
When I was writing that dissertation, my world was very different. I knew where I was going and how I was going to get there, more or less. I had trained hard to be an academic. I would spend lovely jaunts in India looking at wonderful sites and objects, gain an understanding of how people lived, communicated, understood the world around them and expressed that understanding to each other. I would bring back presents that would make my little guy laugh and wonder about people who were different from him, who saw the world differently, who valued diferent things and dreamed different dreams. I would teach my little boy that there was more than one way to think about a problem, a pleasure, an experience; that there was more than one solution, more than one explanation, and these different ways of thinking, feeling, understanding could be tools for making his own sense of the cosmos. I would write wonderful books about people and the objects they made, the survivals of time and weather and cultural storm. I would stand in classrooms and share these visions and ideas with other young minds, and see where they could take thee ideas, what new thoughts could arise just by thinking in a new way, or from a new point of view. Yes, I was going somewhere. I was young. I'm still young for a PhD. I was ready. I had my dream in my pocket, and needed only for time to open out and unfold the events, so they could be savored, shared, and then committed to fond memory.
Academia is a funny place, especially if you're fool enough to take up an obscure field. The whole publish or perish thing is just one facet of the trouble. Children are a big no-no in most departments. Having a family is something reserved for folks in areas more popular with students (and therefore the faculty are in higher demand, and more allowances are made). Teaching experience can actually count against you; it only counts for you if you are also a prolific publisher. What prestige and funds will you bring to the college? That is the question. How many butts will you put into seats? How many donors are at your beck and call? Good teaching be damned, its all about the research. You don't have to be a good writer, you just have to be a published one. Quantity is far more important than quality.
I have a friend who is faculty over at the college while raising an Asperger's child. She's got the full-time gig. Her husband is also a prof. They both do an elaborate juggling act to be sure the children are supervised while they do their research, write their articles, teach their classes. It helps to be in subjects where travel is not a big deal. You can study English quite well without ever setting foot in England. Being full-time gives you more control over the schedule. I often stop to admire how well that family works together as a team to be sure things happen. The flexibility of the schedule is key- there is no way to maneuver through schedules of buses and therapists and hold a full-time, regular-hour job here. Respite and childcare that can handle an ASD child (or even WILL handle one) is practically non-existant without a medicaid waiver. I admire her greatly. She finds time to do her job, expand her work, and advocate for her son. That's a true wonder.
I hadn't secured a full-time gig before I had my guys. I'm an adjunct, when the local schools have money. I grade standardized tests, too, which is the best-paying gig I've got. There's been no time for much research, with running the guys to their appointments. I'm lucky if I get to shower. Trips to India? That's a laugh.
Back to the photo. A dissertation to nowhere. Such is the world I lost when I decided to be an advocate for my son. Not all parents make the choice I made. In fact, I find it disconcerting how few take up the challenge to support and advocate, and instead toss their kid at the school and say "fix it" then disappear. The ones that take up the challenge are always people of strength, fortitude, and often, attitude. Fighting everyone around you all the time is not for the faint-of-heart or weak-of-stomach. All the parents I know who are actually in there pitching are absolutely amazing people. I do my best to be like them. Such is the world I gained.
So this is also an image of what I gained in my life. I have a beautiful son. I hug him close whenever I get the chance. Boys tend to reach a point when they don't want hugs and kisses from Mommy anymore, so I get them in now while I can. Here is an image of the joys of being alive, the comforts of having my baby with me, my little buddy through thick and thin. Even on screamy days, he's my baby.
If I hold really still and think of this image, I can still feel the warm weight of him on my chest and belly, the little hand pulling on my shirt as it clutches at a button, the curve of a diapered bottom in my palm, the soft fuzz of hair, the even breathing sweet with milk. I could tip my head and kiss the top of his, lay my cheek against that little forehead and be instantly in heaven. One little nuzzle and the thoughts would untangle, the words arrange themselves according to thoughts, and sometimes the hand could keep up.
Did I give up my life? I admit there are some moments I wonder if I did. I certainly turned away from the world that was, and entered a whole differnt way of existing, and began to evolve a whole new way of thinking about the world, the cosmos, and my own place in it. Perhaps that is why Welcome to Holland speaks so well to me. I still have moments when I wonder what could-have-been. That old Two Roads in the Wood thing. Don't you ever wonder what was down that well-traveled lane? Even while you appreciate the wonders of the road you have actually taken?
Or, in more direct words...
I always kind of thought that my role in the Hub is not as a leader of a movement, but as a parent. I am learning how to teach my own autistic child- still very, very young- to be able to function and advocate for himself. I can't do that unless I start discussing autism with actual autistic people, so I get a sense of what issues Joey will face, and start thinking about how he might cope with the special needs he has. It is also easier if I have other parents to speak with who understand the concept of acceptance, so that I can prepare for possible problems I will have in teaching Joey, in raising him to be an independent, socially responsible adult.
To what I am doing, it seems I have to fight everyone around me. Now, apparently, that includes autistic adults. That is highly discouraging- even depressing. I was already fighting the ones who clamor for a cure, but also the ones who say they are fighting for rights- including the right to be autistic?
Perhaps it should be considered that the Hub has lots of parents because we are also on that front line of advocating, and we want to get a better idea of what to advocate for. Once Joey turns 23, my rights to help him are greatly curtailed- especially if I am successful in teaching him.
I've got enough people trying to fight me and fight my child. I really didn't need more.
To what I am doing, it seems I have to fight everyone around me. Now, apparently, that includes autistic adults. That is highly discouraging- even depressing. I was already fighting the ones who clamor for a cure, but also the ones who say they are fighting for rights- including the right to be autistic?
Perhaps it should be considered that the Hub has lots of parents because we are also on that front line of advocating, and we want to get a better idea of what to advocate for. Once Joey turns 23, my rights to help him are greatly curtailed- especially if I am successful in teaching him.
I've got enough people trying to fight me and fight my child. I really didn't need more.
Friday, June 01, 2007
Another Day, Another Can of Worms: To the Autism Hub
I write today thinking about the increasingly... spirited?... discussion on other Autism Hub blogs about neurodiversity as a movement. United we stand. Divided... not so much fun.
I was not invited to join the Hub- I tracked down who owned it and asked to join. I am glad to be here, though I doubt I'll be nominated anytime soon for any "thinking awards" or that anyone will track me down to ask me to write a book. Well, not about Autism, at any rate, nor anything based on this blog. I'm not the best writer on the planet. Call me a selfish little piggie if you like, but I joined for me- because the blogs I liked to read all had that noble mark of the Autism Hub. Because I wanted to be part of the community that seems to be centered here.
Perhaps because I "grew up" playing MUDs and connecting through text on a screen, the whole online thing come to me as a sense of spaces, cozy little wizard domains where we set up shop according to our own gifts and use our workroom-blogs to try to share a little of our favorite talents and thoughts with those we have invited in- in this case, everyone. I like visiting you all. I sometimes wish I had some of the wonderful talents you all seem to have. It feels like meandering over to different people's houses to hang out with a cup of something yummy on a very comfy couch, and seeing what everyone is up to today. It's like going down to the Hay when I was college, getting some strawberries with z-cream (or fresh carrot cake! Yum!), finding the best couch by the window (since I was the only one who didn't smoke, I needed a window), maybe flipping through the nearest shelf of used books to see if there wa anything new and interesting, and seeing who showed up today. There was a basic core crowd that usually showed up, and then the drifters who sometimes showed up, and the fringes who you remembered when they did show up, but they usually had other lives that kept them too busy to come much. I was always glad to see everyone. They all had such interesting stories and lives and thoughts and dramas. I still wonder what happened to those people. They don't let people smoke at the Hay anymore. It has a grill now, new premises, a juice bar thing; I don't think they sell books anymore. Gone are the comfy couches that drew us together and gave us a livingroom- or was it a family room? away from home.
Being the mom just starting the adventure of supporting an autistic son, I spend most of my Hub time following the blogs and lives of others with autistic children. There is a comfort in reading the speech patterns of Whitterer's kids, who seem so very verbal to me, and seem so close to Joey's. There is hope for more communication from my own baby when I read about these guys. Besides, who else knows that "goldfish" is a food group? There is also comfort at Club166, who has been there, done that with the IEP nightmare. Kristina is always offering great information and solid advice. Big White Hat provides an air of southern charm and gentility to the whole thing. I could go on. You probably get the picture.
That's right: I am one of those "parents." Ignored and even actively disenfranchised by the school system that is supposed to be helping my child, taunted by many of the parents around me because I don't declare thimerosal to be the Work of the Beast and chelation to be the Salvation of Us All, and bounced between therapists and specialists who can't seem to agree on what exactly Joey may or may not need, the Hub is a place where I can pull myself together on a Screamy Day and remember I'm not the only person doing this. That I'm not crazy thinking my kid is, first and foremost, a kid, and should be treated with respect and dignity- the same treatment other children seem to get from people as a matter of course. Here is a place to access what others are thinking and feeling, especially adults who face the challenges of autism directly, and with courage, strength, and even pride, so that they can enjoy their talents- like everyone else. Here are people, autistic or otherwise, whom I hope my children (both of them) can and will look up to and try to emulate, learn from, and remember all of their lives.
Yep. Plenty of comfy couches here. There's food in the fridge. You know where the drinks are. Make yourself at home.
I was not invited to join the Hub- I tracked down who owned it and asked to join. I am glad to be here, though I doubt I'll be nominated anytime soon for any "thinking awards" or that anyone will track me down to ask me to write a book. Well, not about Autism, at any rate, nor anything based on this blog. I'm not the best writer on the planet. Call me a selfish little piggie if you like, but I joined for me- because the blogs I liked to read all had that noble mark of the Autism Hub. Because I wanted to be part of the community that seems to be centered here.
Perhaps because I "grew up" playing MUDs and connecting through text on a screen, the whole online thing come to me as a sense of spaces, cozy little wizard domains where we set up shop according to our own gifts and use our workroom-blogs to try to share a little of our favorite talents and thoughts with those we have invited in- in this case, everyone. I like visiting you all. I sometimes wish I had some of the wonderful talents you all seem to have. It feels like meandering over to different people's houses to hang out with a cup of something yummy on a very comfy couch, and seeing what everyone is up to today. It's like going down to the Hay when I was college, getting some strawberries with z-cream (or fresh carrot cake! Yum!), finding the best couch by the window (since I was the only one who didn't smoke, I needed a window), maybe flipping through the nearest shelf of used books to see if there wa anything new and interesting, and seeing who showed up today. There was a basic core crowd that usually showed up, and then the drifters who sometimes showed up, and the fringes who you remembered when they did show up, but they usually had other lives that kept them too busy to come much. I was always glad to see everyone. They all had such interesting stories and lives and thoughts and dramas. I still wonder what happened to those people. They don't let people smoke at the Hay anymore. It has a grill now, new premises, a juice bar thing; I don't think they sell books anymore. Gone are the comfy couches that drew us together and gave us a livingroom- or was it a family room? away from home.
Being the mom just starting the adventure of supporting an autistic son, I spend most of my Hub time following the blogs and lives of others with autistic children. There is a comfort in reading the speech patterns of Whitterer's kids, who seem so very verbal to me, and seem so close to Joey's. There is hope for more communication from my own baby when I read about these guys. Besides, who else knows that "goldfish" is a food group? There is also comfort at Club166, who has been there, done that with the IEP nightmare. Kristina is always offering great information and solid advice. Big White Hat provides an air of southern charm and gentility to the whole thing. I could go on. You probably get the picture.
That's right: I am one of those "parents." Ignored and even actively disenfranchised by the school system that is supposed to be helping my child, taunted by many of the parents around me because I don't declare thimerosal to be the Work of the Beast and chelation to be the Salvation of Us All, and bounced between therapists and specialists who can't seem to agree on what exactly Joey may or may not need, the Hub is a place where I can pull myself together on a Screamy Day and remember I'm not the only person doing this. That I'm not crazy thinking my kid is, first and foremost, a kid, and should be treated with respect and dignity- the same treatment other children seem to get from people as a matter of course. Here is a place to access what others are thinking and feeling, especially adults who face the challenges of autism directly, and with courage, strength, and even pride, so that they can enjoy their talents- like everyone else. Here are people, autistic or otherwise, whom I hope my children (both of them) can and will look up to and try to emulate, learn from, and remember all of their lives.
Yep. Plenty of comfy couches here. There's food in the fridge. You know where the drinks are. Make yourself at home.
Thursday, May 31, 2007
Kindergarden Readiness
Next week we do another turn on the IEP dance floor. This is a biggie. We change fromt eh world of preschool to that looming unknown of kindergarden. Real school. SOLs. Full day education.
This was the fall I was supposed to put my little boy on a big yellow school bus for the first time. Instead, it will be our fourth year- old hat. It will just happen earlier in the morning. I actually remember the first time I got on a school bus. The morning was cool and dewy, and I had on a jumper and red checked shirt that I dearly loved, it was really comfortable, and shoes that weren't so much. I can still smell it, the metallic damp of the bus and the plastic seats that were too hard to really get comfortable on. Joey loves riding the bus. It will be a comfort as we send him off into a new world.
It won't be completely new, though. We're probably going to go ahead and put him in the summer program the schol cooked up on the fly; it will give him a chance to get used to the new building, and provide him a very regular schedule or most of the summer. The point is to not have him freak out for months and waste more time at school than absolutely necessary. Maximize the learning, that sort of thing.
We decide the setting Joey will be in. Will we put him in the self-contained classroom, with the spectacular teacher, lower student: faculty ratio, but not as much exposure to non-disabled peers? Or do we try to press for LRE, despite the teacher being lukewarm and no aide available? The school personnel find his "behaviors" disruptive, so they want him in self-contained; but how much of it discrimination against his way of expressing himself, and how much is really of concern? So what if he tracks instead of giggling with his classmates when he's bored? Shouldn't it be the BOREDOM that is addressed, not my son's way of expressing it? Its not like he's hurting anyone.
My private OT is coming to the meeting. She's as unhappy as I am with the OT situation at school. The OT is the only person that holds over from the preschool; she's the only OT in the system. With all the kids they now know need OT services, you'd think that they'd start hiring OTs, just like they now have several SLPs. But no- we're stuck. So I'll bring an actual professional to help us determine goals.
I also have located a few online resources for determining "kindergarden readiness." Why these weren't pulled out when I was asking about what skills he needed for kindergarden back in September, I have no idea- they are right off the VDOE website- but that's all water under the bridge now. I have these tools now, to take with me and ask about. "He can't sit and listen to a story for ten minutes. He can't tell you his first and last name. He can't button his own clothes. These are skills VDOE says are signs of kindergarden readiness. How will you be addressing these issues?"
As usual, they will probably try to fluster everything and say they are being addressed in goals that sound vaguely connected to these skills, while missing the point. Then they'll tell me they know best, since they are professionals, and have been working with him for three years now. And it will all be so that they only provide what they absolutely must, and at their own convenience.
It's going to be a long week.
This was the fall I was supposed to put my little boy on a big yellow school bus for the first time. Instead, it will be our fourth year- old hat. It will just happen earlier in the morning. I actually remember the first time I got on a school bus. The morning was cool and dewy, and I had on a jumper and red checked shirt that I dearly loved, it was really comfortable, and shoes that weren't so much. I can still smell it, the metallic damp of the bus and the plastic seats that were too hard to really get comfortable on. Joey loves riding the bus. It will be a comfort as we send him off into a new world.
It won't be completely new, though. We're probably going to go ahead and put him in the summer program the schol cooked up on the fly; it will give him a chance to get used to the new building, and provide him a very regular schedule or most of the summer. The point is to not have him freak out for months and waste more time at school than absolutely necessary. Maximize the learning, that sort of thing.
We decide the setting Joey will be in. Will we put him in the self-contained classroom, with the spectacular teacher, lower student: faculty ratio, but not as much exposure to non-disabled peers? Or do we try to press for LRE, despite the teacher being lukewarm and no aide available? The school personnel find his "behaviors" disruptive, so they want him in self-contained; but how much of it discrimination against his way of expressing himself, and how much is really of concern? So what if he tracks instead of giggling with his classmates when he's bored? Shouldn't it be the BOREDOM that is addressed, not my son's way of expressing it? Its not like he's hurting anyone.
My private OT is coming to the meeting. She's as unhappy as I am with the OT situation at school. The OT is the only person that holds over from the preschool; she's the only OT in the system. With all the kids they now know need OT services, you'd think that they'd start hiring OTs, just like they now have several SLPs. But no- we're stuck. So I'll bring an actual professional to help us determine goals.
I also have located a few online resources for determining "kindergarden readiness." Why these weren't pulled out when I was asking about what skills he needed for kindergarden back in September, I have no idea- they are right off the VDOE website- but that's all water under the bridge now. I have these tools now, to take with me and ask about. "He can't sit and listen to a story for ten minutes. He can't tell you his first and last name. He can't button his own clothes. These are skills VDOE says are signs of kindergarden readiness. How will you be addressing these issues?"
As usual, they will probably try to fluster everything and say they are being addressed in goals that sound vaguely connected to these skills, while missing the point. Then they'll tell me they know best, since they are professionals, and have been working with him for three years now. And it will all be so that they only provide what they absolutely must, and at their own convenience.
It's going to be a long week.
Wednesday, May 30, 2007
Allergist
For those following along, the allergist says Joey isn't allergic to anything. The improvements we saw with the prednisone are not connected with allergic anything. The rash he's had since the day he was born is "follicular"- it seems to be following his hair follicles- and isn't itchy, so that's not an allergy. According to the allergist. He says to give the kid eggs, and if the rash comes back, pop an anthisthamine into his mouth, and if he gets better in 2-3 hours, then call the doc back; but otherwise, just tell our docs.
I did tell our docs. They told me to make an appointment with the allergist.
And so it goes.
I did tell our docs. They told me to make an appointment with the allergist.
And so it goes.
Tuesday, May 29, 2007
Lockdown
Well, the day came we were hoping wouldn't.
Over the weekend, Joey and I went for a walk. We were sort of heading for the Memorial Day Illumination, but instead we met some of teh kids across the street and had some impromptu social interaction. Joey really enjoyed himself, and the trucks, and the bikes, and the kids, and can't wait until we "go for a walk" again. I also had fun, because I actually got to talk to other moms and dads, some of which have been int eh neighborhood a while, and I've never spoken to. Crossing the street is a big deal with two small kids, and we don't do it very much.
Today, he kept talking about a blue truck. He has lots of trucks and cars, and every time we found one that was blue, it was offered, and turned down. After speech, I took the baby upstairs for a nap, and mom took Joey outside for a ride on the tricycle, where I joined them, and yet another round of "want blue truck." He opened the back door and went into the house. "Are you getting your truck?" I asked casually. "Yes," he replied, and into the house he went.
Mom and I chatted abotu some local news, friends not doing so well, the allergist appointment tomorrow. The doorbell rang.
Not expecting anyone, I looked up. I can se right through the house from where I was sitting, back door to front- it is one of the reasons I habitually sit there. The door was open. A woman was coming into the house, following Joey. It was an odd sight, and about fifteen things raced through my mind- how did Joey get the door open? Who is this? Did we have therapy today and I forgot? No, its Tuesday. And why did they come to the door? Is Joey letting a stranger into the house? Does she need help?
I was to the door when my brain turned on and recognized my across-the-street neighbor, and the words emerging from her mouth. You guessed it, didn't you?
"He was in the middle of the street..."
Heading across the street, to get the blue truck he had played with days ago, which actually belonged to the little boy whose mother was telling me that she asked Joey where his mommy was, and he had said, "outside" but she didn't see me, so she brought him back across the street...
He was in the middle of the street.
My street is not a hustle-bustle big city disaster, but it is a bit of an artery across town, often taken slightly too fast by us townies. He could have very easily have been hit.
We lock our doors out of habit mostly, from living in places liek Charlottesville, where people were known to walk into homes while people were home and steal stuff or attack them. With Joey's new and unpredictable fondness for wandering off, we have taken this habit to heart. Usually we keep the key to the front door on a high hook. He can work keys, but since he can't reach the key, this has been our current compromise of keeping him locked down, while not being a major fire hazard. However, my mom had left her keys in the lock while she watched Andy (while Joey and I went to therapy). Those keys remained in the lock when I came home. Joey wanted to go across the street to get the truck, so he just turned the key and was gone.
The main problem now is that the back door does not have the double-key bolt, and he can work all the locks and latches I added to it now. Worse, he has actual motivation to leave the house, and determination to do so= we'll hear about this truck for days, maybe weeks. He has a reason to go across the street, and no concept of improper hour of night, danger of the street, and despite our best efforts and lectures, no concept of the reasons he can't just go across the street, walk into someone's house, and get what he thinks is his.
The locksmith comes on Friday. Until then, we have barricaded the back door. We're also seriously looking into alarms. At least we'd know if he opened a door.
Over the weekend, Joey and I went for a walk. We were sort of heading for the Memorial Day Illumination, but instead we met some of teh kids across the street and had some impromptu social interaction. Joey really enjoyed himself, and the trucks, and the bikes, and the kids, and can't wait until we "go for a walk" again. I also had fun, because I actually got to talk to other moms and dads, some of which have been int eh neighborhood a while, and I've never spoken to. Crossing the street is a big deal with two small kids, and we don't do it very much.
Today, he kept talking about a blue truck. He has lots of trucks and cars, and every time we found one that was blue, it was offered, and turned down. After speech, I took the baby upstairs for a nap, and mom took Joey outside for a ride on the tricycle, where I joined them, and yet another round of "want blue truck." He opened the back door and went into the house. "Are you getting your truck?" I asked casually. "Yes," he replied, and into the house he went.
Mom and I chatted abotu some local news, friends not doing so well, the allergist appointment tomorrow. The doorbell rang.
Not expecting anyone, I looked up. I can se right through the house from where I was sitting, back door to front- it is one of the reasons I habitually sit there. The door was open. A woman was coming into the house, following Joey. It was an odd sight, and about fifteen things raced through my mind- how did Joey get the door open? Who is this? Did we have therapy today and I forgot? No, its Tuesday. And why did they come to the door? Is Joey letting a stranger into the house? Does she need help?
I was to the door when my brain turned on and recognized my across-the-street neighbor, and the words emerging from her mouth. You guessed it, didn't you?
"He was in the middle of the street..."
Heading across the street, to get the blue truck he had played with days ago, which actually belonged to the little boy whose mother was telling me that she asked Joey where his mommy was, and he had said, "outside" but she didn't see me, so she brought him back across the street...
He was in the middle of the street.
My street is not a hustle-bustle big city disaster, but it is a bit of an artery across town, often taken slightly too fast by us townies. He could have very easily have been hit.
We lock our doors out of habit mostly, from living in places liek Charlottesville, where people were known to walk into homes while people were home and steal stuff or attack them. With Joey's new and unpredictable fondness for wandering off, we have taken this habit to heart. Usually we keep the key to the front door on a high hook. He can work keys, but since he can't reach the key, this has been our current compromise of keeping him locked down, while not being a major fire hazard. However, my mom had left her keys in the lock while she watched Andy (while Joey and I went to therapy). Those keys remained in the lock when I came home. Joey wanted to go across the street to get the truck, so he just turned the key and was gone.
The main problem now is that the back door does not have the double-key bolt, and he can work all the locks and latches I added to it now. Worse, he has actual motivation to leave the house, and determination to do so= we'll hear about this truck for days, maybe weeks. He has a reason to go across the street, and no concept of improper hour of night, danger of the street, and despite our best efforts and lectures, no concept of the reasons he can't just go across the street, walk into someone's house, and get what he thinks is his.
The locksmith comes on Friday. Until then, we have barricaded the back door. We're also seriously looking into alarms. At least we'd know if he opened a door.
Monday, May 28, 2007
Everybody into the pool!
'Tis the season for getting the water out, watching Joey splash about with glee, then simply pick up his feet so his bottom hits the water, sending half the pool to the grass. It is also the season for Andy to jump in, sit in the water, get out, and complain that he's wet.
Saturday, May 26, 2007
IEP Analogy collection: A Plea
As we enter the thick of the IEP season, especially if your kid is transitioning to a new school (why do they put those off to LATER?), I thought it would be fun to have an "IEP Analogy" collection. Let me know the link to your favorite "An IEP meeting is like..." or "An IEP is like..." (or your local equivalent) blog, article, whatever, and we can all have a good laugh. It will keep us all from screaming.
Thursday, May 24, 2007
Views of my garden
Welcome to my garden. We hope you enjoy the scent of spring roses!
When we moved into this house, there was no garden. The people before us had two large dogs, and when you have two large dogs in a fenced yard, there's usually not much left. The garden actually blooms in waves. It starts with crocus and early daffodils, then opens out with forsythia, later daffodils, and tulips that fade into lilacs. The roses are next, with my Sarah Bernhardt peony and the mockorange. The yard is filled with wafting perfumes. I chose most of the roses because they have a mass effect now, but also continue throughout most of the summer with "pops"- that is, a few flowers all the time. The lilacs become a green backdrop to highlight the rose blooms. I have some iris that come out just before now (to fill the gap betwen lilac and rose), but I need more. I lost several across the back of the yard when my fence was damaged in Isabel. I've also put some poppies in, but they don't last long. I used to have blackberries to line the side, but last year I lost them- I think the folks next door used weedkiller (the blackberries are thornless, but the raspberries are not, and they probably got a few vines on their side of the fence.) Next will be a spirea, and the raspberries will be blooming- not as well as usual, because of the strange and suspicious "blight" from last summer, but the raspberries are at least tryign to come up. Considering the price of raspberries, you'd think free ones would be welcome, but... no accounting for tastes. Anyhoo, the bee balm will be out about then, too. then the daylillies should start, and the finally the dahlias and morning glory. Fall should have another round of mass effect from some of the roses, too. For winter, I have the hollies and winterberries. 
The garden is also designed for other scents, textures. I keep thyme and mint throughout, so it will smell good as the boys run about. I have some other shurbs not famous for bloom, but for foliage; my purpe dragon plant, a verigata, sedum. the poppies have added an interesting texture, I wish they bloomed longer.
Lately I haven't been able to get things done in the garden like I would like. I have a lot of mulching to do. More weeding than I could ever do. The virginia creeper is taking over the fence. At least the boys like dandelions and clover!
I used to like to pictures of Joey in the garden. I still like to take pics of the boys in the garden, but when Joey was little, he seemed like a little flower fairy. His little fingers would pluck at the roses and the grasses. He sat up by himself and squealed himself silly while his daddy made faces and funny noises. He loved to crawl through the grass, exploring this new little world full of life and springtime. He never liked to look up. The sky is a big thing- the world is a huge space.
Andy was afraid of the garden itself. He didn't want Mom and Dad to leave him in the grass, The world, even in the garden, was too big. But he soon discovered that outside was someplace full of wonders- especially birds. He looked up at them and pointed to them like Joey never did. He discovered bee-chasing. He discovered ants. The world around him was full of living things!
It always strikes me that they were noth attracted to the life around them, even if different ways and forms.
Once Upon A Time
Ten years ago, on this day, I was getting married to the most wonderful, huggable, laugh-and-enjoy-life guy in the world. Our ceremony took 11 minutes. We wrote it ourselves. The party lasted about five hours before moving to the motel, where it lasted another four hours. My grandfather walked me down the isle. My other grandfather actually had some cake for the occasion. Both are now gone. It was the last time I ever danced with my brother. For our "first dance" as husband and wife, we chose "Touch Me" by the Doors. The shot of us dancing is still my favorite picture of us.
Nine years ago, on this day, I was opening boxes and trying to get the kitchen settled in our new house. This house. Two years later, we could not have been able to buy it. The torn-up mess of a yard is now landscaped and full of roses, and usually happy boys. The kitchen cabinets and counter desperately need replacing. Kitties still twine furry bodies around the spindles in the dining room.
Five years ago today, I was nursing my firstborn, my Joey, often while watching Ground Force or Changing Rooms on BBC America, sitting in my grandfather's chair. My grandfathers never met Joey. Neither has my brother.
Four years ago today, I was at Ocean City with my husband, eating Thrasher's French Fries, Fisher's Popcorn, and Dolle's taffy, while playing so much at Marty's Playland that I actually won a big prize: a Christmas Goose. It was teh only time we have been together overnight, just Allan and I, since Joey was born. He stayed with Mom, and they had a lot of fun having a weekend slumber party.
Three years ago today, I came home from the hospital with my Andy. I was a new PhD, only a week and a half before. Again, we were nursing, but this time with less TV- I had Joey to keep my eyes on. I managed to do a lot of needlepoint.
Two years ago today, Joey had 25 words. Andy had been walking for two days.
One year ago today, Joey was singing "Waltzing Mathilda" (if you could make out the words at all), spelling his name, and dreaming of the Beach. Andy started speaking in sentences.
And they lived happily ever after.
Nine years ago, on this day, I was opening boxes and trying to get the kitchen settled in our new house. This house. Two years later, we could not have been able to buy it. The torn-up mess of a yard is now landscaped and full of roses, and usually happy boys. The kitchen cabinets and counter desperately need replacing. Kitties still twine furry bodies around the spindles in the dining room.
Five years ago today, I was nursing my firstborn, my Joey, often while watching Ground Force or Changing Rooms on BBC America, sitting in my grandfather's chair. My grandfathers never met Joey. Neither has my brother.
Four years ago today, I was at Ocean City with my husband, eating Thrasher's French Fries, Fisher's Popcorn, and Dolle's taffy, while playing so much at Marty's Playland that I actually won a big prize: a Christmas Goose. It was teh only time we have been together overnight, just Allan and I, since Joey was born. He stayed with Mom, and they had a lot of fun having a weekend slumber party.
Three years ago today, I came home from the hospital with my Andy. I was a new PhD, only a week and a half before. Again, we were nursing, but this time with less TV- I had Joey to keep my eyes on. I managed to do a lot of needlepoint.
Two years ago today, Joey had 25 words. Andy had been walking for two days.
One year ago today, Joey was singing "Waltzing Mathilda" (if you could make out the words at all), spelling his name, and dreaming of the Beach. Andy started speaking in sentences.
And they lived happily ever after.
Wednesday, May 23, 2007
Why God Made Joey Autistic
Because I just love abfh, and we seem to be having a conversation going... but I've been reminded of this question a lot lately. Note that I said "reminded of", not "thinking about."
But why go traight to the point? That wouldn't be any fun.
We were back at Kluge today- not for Joey, but for Andy. Andy has been doing some things that are very unusual and worrisome- like sudden meltdowns and violent temper bursts, echoing, and toe-walking. He's having trouble with articulation and sensory integration. I have him signed up for speech therapy and he's in therapeutic listening and some OT each week. We wanted to be sure this was all he needed.
The conclusion is that the articulation, motor planning, and sensory problems are all resulting in frustration. He's interacting well and has solid language, if you can understand him. IN other words, he's neurotypical. I just suck as a parent.
On the way home, there is a store that I frequent- when I was living in Charlottesville, I was there WAY too much, and got to know some of the salespeople very well, including my friend Mary. We stopped on our way home to say hi, and I told her about the trip.
Mary is very dear to me. She is a breast cancer survivor, and even in the worst of it, had time to listen about my dissertation, then my kids. She's a very sweet, caring person, and I love her to peices. However, she did say something- and says it most times I see her- that always makes me blink: "I'm sure God has a special place for you in Heaven!"
My first thought is always, "Why?"
My second thought is the reminding of that immortal question, "Why did God make Joey autistic?" It is a question that hung in the air when I was tracking down a Sunday School for Joey, and bounces about when I talk to religious friends. I have no answer for it. I have no idea. I haven't been reading God's mind lately, sorry. He's been sending some hints, but nothing simple seems to be in store. That's a good thing. I would like to think part of the reason he is autistic is what abfh says she is here for: "to kick our society's prejudiced ass." As important as this is, I certainly hope he is here for so very much more. What I have learned from Joey seems to be just a bonus along the way; I am honored to have been blessed with Joey and Andy, and may I be blessed with more.
Perhaps more interesting to me is the question, "Why did God make Andy NOT autistic?" I have no more answer for this than I have for the former question, and for the same reason. I talk to God a lot, but He doesn't tell me everything, and nothing straight out in words. Words are, after all, a very human invention, and convention. A wonderful, useful invention; but human all the same, with human limitations. Trying to use words to talk about God with a literal-minded person is often futile, because they can't understand language used on the slant. Personally, I hope Andy is also here to kick prejudice in the shorts. But that's just me.
God made Joey autistic. That is the way he is. God made Andy neurotypical. That is the way he is.
Thank God.
But why go traight to the point? That wouldn't be any fun.
We were back at Kluge today- not for Joey, but for Andy. Andy has been doing some things that are very unusual and worrisome- like sudden meltdowns and violent temper bursts, echoing, and toe-walking. He's having trouble with articulation and sensory integration. I have him signed up for speech therapy and he's in therapeutic listening and some OT each week. We wanted to be sure this was all he needed.
The conclusion is that the articulation, motor planning, and sensory problems are all resulting in frustration. He's interacting well and has solid language, if you can understand him. IN other words, he's neurotypical. I just suck as a parent.
On the way home, there is a store that I frequent- when I was living in Charlottesville, I was there WAY too much, and got to know some of the salespeople very well, including my friend Mary. We stopped on our way home to say hi, and I told her about the trip.
Mary is very dear to me. She is a breast cancer survivor, and even in the worst of it, had time to listen about my dissertation, then my kids. She's a very sweet, caring person, and I love her to peices. However, she did say something- and says it most times I see her- that always makes me blink: "I'm sure God has a special place for you in Heaven!"
My first thought is always, "Why?"
My second thought is the reminding of that immortal question, "Why did God make Joey autistic?" It is a question that hung in the air when I was tracking down a Sunday School for Joey, and bounces about when I talk to religious friends. I have no answer for it. I have no idea. I haven't been reading God's mind lately, sorry. He's been sending some hints, but nothing simple seems to be in store. That's a good thing. I would like to think part of the reason he is autistic is what abfh says she is here for: "to kick our society's prejudiced ass." As important as this is, I certainly hope he is here for so very much more. What I have learned from Joey seems to be just a bonus along the way; I am honored to have been blessed with Joey and Andy, and may I be blessed with more.
Perhaps more interesting to me is the question, "Why did God make Andy NOT autistic?" I have no more answer for this than I have for the former question, and for the same reason. I talk to God a lot, but He doesn't tell me everything, and nothing straight out in words. Words are, after all, a very human invention, and convention. A wonderful, useful invention; but human all the same, with human limitations. Trying to use words to talk about God with a literal-minded person is often futile, because they can't understand language used on the slant. Personally, I hope Andy is also here to kick prejudice in the shorts. But that's just me.
God made Joey autistic. That is the way he is. God made Andy neurotypical. That is the way he is.
Thank God.
Tuesday, May 22, 2007
Giggle Break
So, this man was driving down the road behind a truck full of pigs. The truck hit a bump, and a pig fell out of the truck. The man pulls over, puts the pig in his car, then races off after the truck at top speed.
Needless to say, he is soon pulled over for speeding. AS the cop is writing the ticket, he notices the pig.
"Sir," the policeman frowns at the man, "Why do you have a pig in your car?"
So the man explains the truck full of pigs and all. "So you see, officer," he concludes, "I was tryingto catch up with the truck, so I could give the farmer his pig."
"That truck is long gone," the policeman shook his head. "Why don't you take the pig to the zoo?" The driver agrees, takes his ticket, and drives off into the sunset.
The next day, the same police officer is patroling, when he spots the car from the day before. There are surf boards and umbrellas strapped to the top, a large icnic basket in the back seat... and the pig. The policeman pulls the guy over.
"Sir, I thought I told you to take that pig to the zoo!"
"Yes, thank you, Officer- we had so much fun at the zoo, we're going to the beach today!"
Needless to say, he is soon pulled over for speeding. AS the cop is writing the ticket, he notices the pig.
"Sir," the policeman frowns at the man, "Why do you have a pig in your car?"
So the man explains the truck full of pigs and all. "So you see, officer," he concludes, "I was tryingto catch up with the truck, so I could give the farmer his pig."
"That truck is long gone," the policeman shook his head. "Why don't you take the pig to the zoo?" The driver agrees, takes his ticket, and drives off into the sunset.
The next day, the same police officer is patroling, when he spots the car from the day before. There are surf boards and umbrellas strapped to the top, a large icnic basket in the back seat... and the pig. The policeman pulls the guy over.
"Sir, I thought I told you to take that pig to the zoo!"
"Yes, thank you, Officer- we had so much fun at the zoo, we're going to the beach today!"
The Human Thing
Our special ed director has a daughter with MS. It has turned aggressive, and she is currently in intensive care. Please keep our director and his family in your prayers.
Being social
When I was little, we lived in Prince Georges' County, and I went to an elementary school there called Tanglewood. I have some very strange memories of Tanglewood, and being little. The school sat slightly off the road to allow for buses to come up in a half-circle drop off. If you went in the front doors, the cafeteria/auditorium/cafeteria was right in front of you, across a hall. The rest of the school lay to the right. The principal's office was right in that front hall; turning right to go down it, the office was on the right. Straight ahead at teh end of the hall was my kindergarten room on the left. My first grade room was down that same hall, to the right; I remember it as directly across from teh kindergarten room, but it may have been closer to the front door. There were also at least two second-grade rooms in that hall. Before reaching it, there was a hall that split off to the left. I remember the school as this sort of L, but there may have been more halls. If we turned down the left hall (instead of going on the the kindergarden and first grade rooms), my second grade room was on the left. The special ed room was on the right along that hall, but it was not the first room. My brother's fourth grade room was also on this hall to the left, further down. The school went through fifth grade, so there must have been more rooms down that hall; I never ventured there. If we return to the gym/auditorium/cafeteria, entering form teh front door, you could walk straight through to an asphalted area that may have once been a parking lot, but no cars were ever there. Beyond that, enclosed to the right by that left-hand hall, was the playground. The swings, a set of monkey bars, and a tether-ball lay straight ahead, bounded beyond by trees. Slight to left beyond the swings was a large playing field for games like soccer, also bounded by trees, like a wood. directly to teh left of the asphalt was another monkey-bars, some trees, a balance beam, and I think there was some other equipment there that I didn't use. Going through this little area to the wood, there was a little path through the wood and down some steps to a lower playground. This included a merry-go-round, swings, and more monkey bars, and a teer-totter, but there was a lot more trees here. It was a special treat to be permitted to go to the lower playground.
When I was little, and going to school, my favorite thing to do- much to the annoyance of the school personnel- was to wander around the edge of the far soccer field, by myself, and pick quaker ladies and little orangy flower that I don't know the name of, and sometimes there were daisies towards the end of the year. By the end of second grade, this occupation was banned (I assume now because I was too far away for them to feel safe, since the other children were all on the equipment). I have some odd, disconnected memories of two little girls- Staphanie and Terry- who were best friends, and decided I was OK to play with, too. I think about those little girls a lot. I never felt actually connected to them- they were a little pair, and I was the permited third wheel- but I never felt they were purposely leaving me out, like almost everyone else did. Stephanie had light hair she kept in double pony-tails, long ones, and sometimes in two braids. Terry was dark, with curly hair she was emmensely proud of. They were both tall like me, which may have been the original attraction. They liked to play house and walk on the balance beam. I liked the beam, too. I could pretend to be graceful, dipping a toe as I walked like the gym teacher was always telling us to do- and I could do it by myself.
I've been thinking about these things a lot lately, especially while observing Joey's play and social skills, and Andy's. Andy has been making friends on the playground. I can do what he does now- just jump in and assume everyone will play or talk- but when I was his age, I wasn't so hot at it. Other children were just that- Other. The disconnection lingers. I watch Joey trying to connect. He doesn't know what to say to other kids. I can't answer them when they speak to him. Given the chance to simply act, he's right in there, but if there is speaking involved- his difference becomes immediately apparent, and he is locked out. My problem was that I simply didn't relate to what other children found interesting. Joey's gets locked out because he can't bring words into play to express that interest.
When I was little, and going to school, my favorite thing to do- much to the annoyance of the school personnel- was to wander around the edge of the far soccer field, by myself, and pick quaker ladies and little orangy flower that I don't know the name of, and sometimes there were daisies towards the end of the year. By the end of second grade, this occupation was banned (I assume now because I was too far away for them to feel safe, since the other children were all on the equipment). I have some odd, disconnected memories of two little girls- Staphanie and Terry- who were best friends, and decided I was OK to play with, too. I think about those little girls a lot. I never felt actually connected to them- they were a little pair, and I was the permited third wheel- but I never felt they were purposely leaving me out, like almost everyone else did. Stephanie had light hair she kept in double pony-tails, long ones, and sometimes in two braids. Terry was dark, with curly hair she was emmensely proud of. They were both tall like me, which may have been the original attraction. They liked to play house and walk on the balance beam. I liked the beam, too. I could pretend to be graceful, dipping a toe as I walked like the gym teacher was always telling us to do- and I could do it by myself.
I've been thinking about these things a lot lately, especially while observing Joey's play and social skills, and Andy's. Andy has been making friends on the playground. I can do what he does now- just jump in and assume everyone will play or talk- but when I was his age, I wasn't so hot at it. Other children were just that- Other. The disconnection lingers. I watch Joey trying to connect. He doesn't know what to say to other kids. I can't answer them when they speak to him. Given the chance to simply act, he's right in there, but if there is speaking involved- his difference becomes immediately apparent, and he is locked out. My problem was that I simply didn't relate to what other children found interesting. Joey's gets locked out because he can't bring words into play to express that interest.
Monday, May 21, 2007
Parent Role at IEP, addendum
Last month, I discussed the airplane analogy and the role of the parent at an IEP meeting. I now have an addendum.
You consult with several liscensed, experienced pilots, and finally at least get detailed instructions on how to set the controls to land in you desired destination, or close enough. Let's say, just for fun, that the destination is Varanasi, India, because it is really a lovely place and I like it a lot, and I get to sigh as I type ("Ahhh... to be on the terrace roof of the Ganges View, sipping a Mirinda...") OK, so we're set. It isn't an easy flight, you have to completely skirt Iraq because of the war, but you have it on best authority how to do this.
However, the flight crew still refuses you entry to the cockpit to set the controls. They might glance at teh instructions you have, but I doubt it, but at least they will now set some controls- to land in Pocatello, Idaho. If you're lucky, they might want to fly you to London, England. Both of these are perfectly nice places. However, you will note that neither of them are remotely near or like Varanasi, India. They tell you all the wonders of these destinations, and how they are only required to land the plane safely at a destination that is adequate. They tell you how easy it will be to get to Varanasi, India from these places. And if you get shirty and refuse to go to Pocatello, Idaho or London, England, they just shrug and lock the cockpit door again. They might even try to call an air marshall.
Stay tuned for what happens when you bring that trained pilot with you on the flight...
You consult with several liscensed, experienced pilots, and finally at least get detailed instructions on how to set the controls to land in you desired destination, or close enough. Let's say, just for fun, that the destination is Varanasi, India, because it is really a lovely place and I like it a lot, and I get to sigh as I type ("Ahhh... to be on the terrace roof of the Ganges View, sipping a Mirinda...") OK, so we're set. It isn't an easy flight, you have to completely skirt Iraq because of the war, but you have it on best authority how to do this.
However, the flight crew still refuses you entry to the cockpit to set the controls. They might glance at teh instructions you have, but I doubt it, but at least they will now set some controls- to land in Pocatello, Idaho. If you're lucky, they might want to fly you to London, England. Both of these are perfectly nice places. However, you will note that neither of them are remotely near or like Varanasi, India. They tell you all the wonders of these destinations, and how they are only required to land the plane safely at a destination that is adequate. They tell you how easy it will be to get to Varanasi, India from these places. And if you get shirty and refuse to go to Pocatello, Idaho or London, England, they just shrug and lock the cockpit door again. They might even try to call an air marshall.
Stay tuned for what happens when you bring that trained pilot with you on the flight...
Saturday, May 19, 2007
Dinosaurs!!!
I didn't have to work today- a rare Saturday treat that marks the beginning of summer, when fewer people take standardized tests, and thus there is less work to be had. So I packed up my boys, hijacking Grandma, and off we went to the Great Big City and the Museum of Really Old Stuff. Specifically, we were off to see the dinosaurs!
Andy is currently a dinosaur FREAK. Everything is dinosaurs. If you want to reinforce behavior, use dinosaurs. Want to reward him? Cajol him? Comfort him? Try a dinosaur. We got a coupon from the Toys-R-Us Birthday Club. What did he pick out? More dinosaurs.
Joey never really gets into anything in particular for any length of time. We've gone through a Cars phase, and he still likes to go to bed with the Mr. Guinea Pig I made for him. He likes a little Pooh Bear that he pretends is Little Bear, and of course there is Octopus. But no real interest has taken hold of him the way Andy loves dinosaurs. Joey's interests are more kinetic than topical.
Anyway, we headed off into the sunrise to go see Dinosaurs. We made some plans on the way up to deal with meltdowns, tracking, lost children, lost Grandma. We figured we'd need to eat in the cafeteria, and discussed the needs for a quiet corner table. I had packed extra pull-ups for Andy, and extra clothes for everybody. We were off on our road trip, prepared for a day with an autistic child in a crowded, new place! The Smithsonian on a Saturday! (Anybody cringing yet?)
I was exceedingly proud of both of my guys. We had no meltdowns. No... wait.. let me repeat that for you! We had no meltdowns. None. Zero. Zip.
We managed to get a parking spot practically in front of the museum on the street- a feat unheard of in the modern world. We were obviously meant to be there today. So we park, feed the meter, and head inside. We head straight for the dinosaurs- which requires a ride up an escalator, This is an excellent start, because Joey loves escalators. Up we go, and since we have no camera (I rarely have a camera if I don't have a third set of hands to carry one), Grandma runs ahead of us (literally- I was shocked. Bad knees and all, off she sprinted!) so she can see Andy's face as he comes around the corner and sees his very first, real, live, in-person Dinosaur. I wish I had been able to see that face straight-on, too; but the squeal of delight ("T-RECTH!") will have to do for a mom. Joey was happy about it, too. After all, its big, and in a room full of nice handrails to track. He managed to get through the droves of tourists by tracking, without us losing sight of him before reigning him in on occasion. He even looked at some of the dinosaurs. But Andy... here was a child in Heaven. Had I left him there to live his life in that room, he would have exploded with joy. T-Rex, triceratops, allosaurus, stegasaurus, pteradons, even hadrosaurs. Mommy had to be taken by the hand and shown each wonder, then Grandma found for the same tour.
We tried to have lunch in the Fossil Cafe, but there was no room, so we finally gave up and went to the big cafeteria. They were only taking cash, so I had to locate an ATM, but all was well. We found a fairly out-of-the-way table where I could contain children, and they ate like champs. Both had two chicken strips, some fruit, and fries, and Andy even had a bite of my chicken curry sandwich, and declared it delicious.
We then decided to go up to see the mammals. I was disappointed. The old exhibit were diaramas, so you got a sense of the animals in their habitat. Besides, my great-uncle Watson made those diaramas. Now, they have the animals stuck in cases, most very high over your head, with no context at all. They already have a zoo, so I didn't see the point. Joey wanted to track the handrails, and ran ahead, and into someone. Not good.
Fortunately, the Discovery Room is not as popular as it was when I was little, no tickets needed, we just walked right in. It's very nicely set up, at least for us. There were some risers up to some windows and books, and then shelves with the hands-on stuff in them. Mom and I sat at the shelves, and when the boys wanted to engage, they came over to see what we had; when they wanted a break, they went over to teh window away from everything. They got to hold seasheels and starfish, play a drum, looks at things through a microscope, and even touch a crocodile's head! Fabulous stuff.
While the remodeling is on, the back corner by the Discovery Room is more dimly lit, and has a bench, but no people, since there's nothing there to see right now. Afte the excitement, we sat for a few minutes. All the other rooms were brightly lit, which helped Joey immensely; now the oasis of quiet let everyone regroup before being packed back up and heading home. Mom decided to stop and buy t-shirts, so we chased pigeons for a few minutes, then made it back, with our new shirts on, to the car just as the meter ran out. Perfecto.
It's a bit of work to take these guys out like this, but man, what a success. Can't beat that.
Andy is currently a dinosaur FREAK. Everything is dinosaurs. If you want to reinforce behavior, use dinosaurs. Want to reward him? Cajol him? Comfort him? Try a dinosaur. We got a coupon from the Toys-R-Us Birthday Club. What did he pick out? More dinosaurs.
Joey never really gets into anything in particular for any length of time. We've gone through a Cars phase, and he still likes to go to bed with the Mr. Guinea Pig I made for him. He likes a little Pooh Bear that he pretends is Little Bear, and of course there is Octopus. But no real interest has taken hold of him the way Andy loves dinosaurs. Joey's interests are more kinetic than topical.
Anyway, we headed off into the sunrise to go see Dinosaurs. We made some plans on the way up to deal with meltdowns, tracking, lost children, lost Grandma. We figured we'd need to eat in the cafeteria, and discussed the needs for a quiet corner table. I had packed extra pull-ups for Andy, and extra clothes for everybody. We were off on our road trip, prepared for a day with an autistic child in a crowded, new place! The Smithsonian on a Saturday! (Anybody cringing yet?)
I was exceedingly proud of both of my guys. We had no meltdowns. No... wait.. let me repeat that for you! We had no meltdowns. None. Zero. Zip.
We managed to get a parking spot practically in front of the museum on the street- a feat unheard of in the modern world. We were obviously meant to be there today. So we park, feed the meter, and head inside. We head straight for the dinosaurs- which requires a ride up an escalator, This is an excellent start, because Joey loves escalators. Up we go, and since we have no camera (I rarely have a camera if I don't have a third set of hands to carry one), Grandma runs ahead of us (literally- I was shocked. Bad knees and all, off she sprinted!) so she can see Andy's face as he comes around the corner and sees his very first, real, live, in-person Dinosaur. I wish I had been able to see that face straight-on, too; but the squeal of delight ("T-RECTH!") will have to do for a mom. Joey was happy about it, too. After all, its big, and in a room full of nice handrails to track. He managed to get through the droves of tourists by tracking, without us losing sight of him before reigning him in on occasion. He even looked at some of the dinosaurs. But Andy... here was a child in Heaven. Had I left him there to live his life in that room, he would have exploded with joy. T-Rex, triceratops, allosaurus, stegasaurus, pteradons, even hadrosaurs. Mommy had to be taken by the hand and shown each wonder, then Grandma found for the same tour.
We tried to have lunch in the Fossil Cafe, but there was no room, so we finally gave up and went to the big cafeteria. They were only taking cash, so I had to locate an ATM, but all was well. We found a fairly out-of-the-way table where I could contain children, and they ate like champs. Both had two chicken strips, some fruit, and fries, and Andy even had a bite of my chicken curry sandwich, and declared it delicious.
We then decided to go up to see the mammals. I was disappointed. The old exhibit were diaramas, so you got a sense of the animals in their habitat. Besides, my great-uncle Watson made those diaramas. Now, they have the animals stuck in cases, most very high over your head, with no context at all. They already have a zoo, so I didn't see the point. Joey wanted to track the handrails, and ran ahead, and into someone. Not good.
Fortunately, the Discovery Room is not as popular as it was when I was little, no tickets needed, we just walked right in. It's very nicely set up, at least for us. There were some risers up to some windows and books, and then shelves with the hands-on stuff in them. Mom and I sat at the shelves, and when the boys wanted to engage, they came over to see what we had; when they wanted a break, they went over to teh window away from everything. They got to hold seasheels and starfish, play a drum, looks at things through a microscope, and even touch a crocodile's head! Fabulous stuff.
While the remodeling is on, the back corner by the Discovery Room is more dimly lit, and has a bench, but no people, since there's nothing there to see right now. Afte the excitement, we sat for a few minutes. All the other rooms were brightly lit, which helped Joey immensely; now the oasis of quiet let everyone regroup before being packed back up and heading home. Mom decided to stop and buy t-shirts, so we chased pigeons for a few minutes, then made it back, with our new shirts on, to the car just as the meter ran out. Perfecto.
It's a bit of work to take these guys out like this, but man, what a success. Can't beat that.
amBush
When I was in intermediate (middle) school, I was terribly, terribly bored. In an attempt to revitalize my interest in school, I was given a project to landscape a small strip of land between the road and the bus pull-off in front of the school. iI was told the budget and sent off. I measured and made diagrams of the area ot be done. I interviewed landscapers until I found one that would work with me and within my budget. Instead of just planning to stick some trees in a line and stick in some annuals aroudn them, we planned the landscaping to be low-maintenance, able to withstand heavy traffic in case of fire drills and the like. We considered the view both from the school and the street, and came up with textures and line that worked from both directions. We wrote up the contract, and I took it all in to the principal.
Two weeks later, I got off teh bus to see a few trees stuck out in the space in a little line, with annual s stuck in around them. The annuals were promptly trampled three days later, when we had a fire drill. "Well, we decided to just go ahead and get something in," I was told when I asked about my project. Somehow, I never regained much interest in school.
I have yet to come out of an IEP meeting without being reminded of this experience.
Two weeks later, I got off teh bus to see a few trees stuck out in the space in a little line, with annual s stuck in around them. The annuals were promptly trampled three days later, when we had a fire drill. "Well, we decided to just go ahead and get something in," I was told when I asked about my project. Somehow, I never regained much interest in school.
I have yet to come out of an IEP meeting without being reminded of this experience.
Friday, May 18, 2007
Arg
So they put me off for three weeks so they could put together their own littl in-house program. I walked out just on principle. I told theym I had already signed JOey up for summer programming- programming that they had said was acceptable. Now, its their way or the highway.
The program doesn't sound too bad, with a special ed teacher, an aide, visits from the speech pathologist, and the ABA specialist we're already using coming in for consultation. They'd be working on social skills. But what about the sensory issues that I already have to fight tooth and nail to get addressed?
Now what do I do?
The program doesn't sound too bad, with a special ed teacher, an aide, visits from the speech pathologist, and the ABA specialist we're already using coming in for consultation. They'd be working on social skills. But what about the sensory issues that I already have to fight tooth and nail to get addressed?
Now what do I do?
ESY IEP: Round 2
We have another meeting to straighten out the ESY this morning. I've already signed him up for OT and speech camps, so I am hoping this will take all of 15 minutes.
Wish me luck. I'll keep you all posted!
Wish me luck. I'll keep you all posted!
Thursday, May 17, 2007
Did I open a can of worms, or what?
What does a proper ABA program do?
Part of the goal of this blog is to share what I have learned about autism and services. One of the lines of investigation I have been drowned in is ABA.
First and foremost, I am not an ABA fanatic. I think it is very useful for very specific types of skills, and needed for certain kinds of children. Not all of those children are autistic. The goal of most ABA providers is to change behavior. The question becomes, which behavior, when, and why?
For us, the point of ABA is to teach Joey to learn, and to provide him with skills he will need to cope with living. ABA is very good for teaching Joey skills he can imitate, repeat, and incorporate. For example, he has learned to respond to questions using discrete trial training. He is currently learning to sit and focus while another person reads a story. He learned to use the potty this way. We reinforce positive accomplishments, and he gets the idea of what he is doing right, as opposed to what he is doing wrong.
Joey needs about five hours a week of this one-on-one engagement that is emphasizing learning and imitation to gain skills. He actually only gets about three hours a week, because as is mentioned elsewhere, it is very, very expensive to have ABA done by a real ABA specialist, as opposed to some college kid who has the same weekend workshop training that I do.
ABA done wrong is dangerous. We had a program in here a couple years ago. They insisted on a very set program of skills, most of which Joey had already acquired, so he was going to be very, very bored. Asking a kid who can count to 100 to count to 5 over and over again is not helpful. You are not teaching that child anything, nor are you reinforcing anything but basic obedience. Joey is not a trained seal. Such a program was not helpful; it was harmful, as it provided no rewards for learning- including learning itself.
Yes, Joey needs to learn that while in a classroom, he needs to be able to sit and focus on a task. However, there is no need to completely eliminate his “autistic” behaviors. This is something our Sunday school teachers are learning. I observed him in class last week, because they are saying he is still having a lot of trouble with group singing and storytime. What I discovered is he’s doing just fine. About half the class lost interest in this loosely structured activity set. However, instead of whispering and giggling to other children, finding toys, or crawling off to sit in another part of the room and ignore the teacher, Joey chose to track. He was displaying the same boredom as the other students, just in his own way. The movement was perceived by his non-autistic teachers as more disruptive (than giggling, mind you). So I told them basically to suck it up and either provide more interest, or leave him alone (only politer, because they have been very helpful and have been very glad to learn to accept and accommodate Joey, and to help his classmates to do so).
Perhaps a point I will always have differences with some others is whether or not the word “intervention” is appropriate. The word does indeed imply crisis. Autism itself is not a crisis, and I am concerned that it is being perceived as a crisis. Autism is not a crisis- the lack of preparation and available support and service is definitely a crisis. But are families who need early services in need of intervention? Are they, in short, having an emergency?
I cannot speak for other families. I can only speak for my own, and specifically in our situation with Joey: we had an emergency. When we began this adventure, we were at the brink of a severe problem. We didn’t just need service- we needed intervention, and we needed it yesterday. We had a child that had been happy and healthy turning into a child who was frustrated and angry. I am not sure how to explain this, standing in my position as a parent, knowing that I am trying to explain this to people who were experiencing developmental first-hand. Perhaps I need to point out the basic difference in the two roles. Children grow up whether you parent them or not.
It is a parent’s role to teach and guide the child how to cope with living, and basic skills such as healthy diet, healthy habits, and functional living. It is the child’s role to learn these skills, practice them in a safe environment provided by parents, and incorporate these skills into a hopefully healthy life. What they do with life from there is up to them (unless you have parents who dictate what you are going to be when you grow up). We end up with many conversations like I had with Andy today:
“Andy, what would like for lunch? Would you like peanut butter and jelly, or grilled cheese sandwich?”
“I-keem.”
“We can have ice cream after we eat lunch. Would you like peanut butter and jelly, or a grilled cheese sandwich?”
“I-keem.”
“You need to pick a sandwich first. Would you like peanut buter and jelly, or grilled cheese?”
“Sees.”
“Great, we’ll have grilled cheese, with carrots. Do you want apples or pears with your cheese sandwich?”
“I-keem.”
“We can have ice cream for dessert. Would you also like apples, or pears?”
“Ber.”
“Good choosing! We can have grilled cheese with carrots, and pears, then we’ll have ice cream. Does that sound like a good lunch?”
“Yeth!”
So when I have a child who is frustrated, screaming, and knocking their head on the floor from the frustration, then it is my job to step in- to intervene- an help this child learn skills to cope. What skills are needed? For Joey, he needed to learn to communicate his needs, and skills for venting frustrating that were not harmful to himself or to others. ABA is one method for teaching such skills. In fact, many methods use the basic framework of discrete trials. Speech therapy allows for communication. Occupational therapy helps him learn to regulate his own body and sensory input. ABA teaches him how to learn. Being in school helps him learn to negotiate social situations, group situations, focus, and specific academic tasks. Most “normal” kids do not have speech therapy, occupational therapy, ABA, or preschool at the age of 2 (or don’t need school at the age of 2, though the parents may want it.)
Compare this even to my other child- he will be getting speech therapy because he has some motor planning issues that result in articulation problems. He has some OT to help him cope with sensory issues and motor planning. I’ll start him in school two days a week in the fall- not because he needs it, but because I want him to have some exposure to other children and other adults, so it won’t be completely new when he goes to kindergarden. We do not have an emergency, we’re just shoring up some perceived deficits to make his life easier.
As a parent, watching Joey spiral into frustration, anger, and depression at the tender age of 2 is not only heartbreaking, it is my job to act, and to intervene. This wasn’t just about him drifting off into a world of his own- this was about a child who was becoming increasingly unhappy and aggressive out of aggravation with his inability to communicate and control his own body.
Part of the goal of this blog is to share what I have learned about autism and services. One of the lines of investigation I have been drowned in is ABA.
First and foremost, I am not an ABA fanatic. I think it is very useful for very specific types of skills, and needed for certain kinds of children. Not all of those children are autistic. The goal of most ABA providers is to change behavior. The question becomes, which behavior, when, and why?
For us, the point of ABA is to teach Joey to learn, and to provide him with skills he will need to cope with living. ABA is very good for teaching Joey skills he can imitate, repeat, and incorporate. For example, he has learned to respond to questions using discrete trial training. He is currently learning to sit and focus while another person reads a story. He learned to use the potty this way. We reinforce positive accomplishments, and he gets the idea of what he is doing right, as opposed to what he is doing wrong.
Joey needs about five hours a week of this one-on-one engagement that is emphasizing learning and imitation to gain skills. He actually only gets about three hours a week, because as is mentioned elsewhere, it is very, very expensive to have ABA done by a real ABA specialist, as opposed to some college kid who has the same weekend workshop training that I do.
ABA done wrong is dangerous. We had a program in here a couple years ago. They insisted on a very set program of skills, most of which Joey had already acquired, so he was going to be very, very bored. Asking a kid who can count to 100 to count to 5 over and over again is not helpful. You are not teaching that child anything, nor are you reinforcing anything but basic obedience. Joey is not a trained seal. Such a program was not helpful; it was harmful, as it provided no rewards for learning- including learning itself.
Yes, Joey needs to learn that while in a classroom, he needs to be able to sit and focus on a task. However, there is no need to completely eliminate his “autistic” behaviors. This is something our Sunday school teachers are learning. I observed him in class last week, because they are saying he is still having a lot of trouble with group singing and storytime. What I discovered is he’s doing just fine. About half the class lost interest in this loosely structured activity set. However, instead of whispering and giggling to other children, finding toys, or crawling off to sit in another part of the room and ignore the teacher, Joey chose to track. He was displaying the same boredom as the other students, just in his own way. The movement was perceived by his non-autistic teachers as more disruptive (than giggling, mind you). So I told them basically to suck it up and either provide more interest, or leave him alone (only politer, because they have been very helpful and have been very glad to learn to accept and accommodate Joey, and to help his classmates to do so).
Perhaps a point I will always have differences with some others is whether or not the word “intervention” is appropriate. The word does indeed imply crisis. Autism itself is not a crisis, and I am concerned that it is being perceived as a crisis. Autism is not a crisis- the lack of preparation and available support and service is definitely a crisis. But are families who need early services in need of intervention? Are they, in short, having an emergency?
I cannot speak for other families. I can only speak for my own, and specifically in our situation with Joey: we had an emergency. When we began this adventure, we were at the brink of a severe problem. We didn’t just need service- we needed intervention, and we needed it yesterday. We had a child that had been happy and healthy turning into a child who was frustrated and angry. I am not sure how to explain this, standing in my position as a parent, knowing that I am trying to explain this to people who were experiencing developmental first-hand. Perhaps I need to point out the basic difference in the two roles. Children grow up whether you parent them or not.
It is a parent’s role to teach and guide the child how to cope with living, and basic skills such as healthy diet, healthy habits, and functional living. It is the child’s role to learn these skills, practice them in a safe environment provided by parents, and incorporate these skills into a hopefully healthy life. What they do with life from there is up to them (unless you have parents who dictate what you are going to be when you grow up). We end up with many conversations like I had with Andy today:
“Andy, what would like for lunch? Would you like peanut butter and jelly, or grilled cheese sandwich?”
“I-keem.”
“We can have ice cream after we eat lunch. Would you like peanut butter and jelly, or a grilled cheese sandwich?”
“I-keem.”
“You need to pick a sandwich first. Would you like peanut buter and jelly, or grilled cheese?”
“Sees.”
“Great, we’ll have grilled cheese, with carrots. Do you want apples or pears with your cheese sandwich?”
“I-keem.”
“We can have ice cream for dessert. Would you also like apples, or pears?”
“Ber.”
“Good choosing! We can have grilled cheese with carrots, and pears, then we’ll have ice cream. Does that sound like a good lunch?”
“Yeth!”
So when I have a child who is frustrated, screaming, and knocking their head on the floor from the frustration, then it is my job to step in- to intervene- an help this child learn skills to cope. What skills are needed? For Joey, he needed to learn to communicate his needs, and skills for venting frustrating that were not harmful to himself or to others. ABA is one method for teaching such skills. In fact, many methods use the basic framework of discrete trials. Speech therapy allows for communication. Occupational therapy helps him learn to regulate his own body and sensory input. ABA teaches him how to learn. Being in school helps him learn to negotiate social situations, group situations, focus, and specific academic tasks. Most “normal” kids do not have speech therapy, occupational therapy, ABA, or preschool at the age of 2 (or don’t need school at the age of 2, though the parents may want it.)
Compare this even to my other child- he will be getting speech therapy because he has some motor planning issues that result in articulation problems. He has some OT to help him cope with sensory issues and motor planning. I’ll start him in school two days a week in the fall- not because he needs it, but because I want him to have some exposure to other children and other adults, so it won’t be completely new when he goes to kindergarden. We do not have an emergency, we’re just shoring up some perceived deficits to make his life easier.
As a parent, watching Joey spiral into frustration, anger, and depression at the tender age of 2 is not only heartbreaking, it is my job to act, and to intervene. This wasn’t just about him drifting off into a world of his own- this was about a child who was becoming increasingly unhappy and aggressive out of aggravation with his inability to communicate and control his own body.
Wednesday, May 16, 2007
Rain
It was a gorgeous day today. Andy and Joey got to play outside. Andy even got a trip to the park. Next week, Andy will be three, and have good look-over by our developmental pediatrician. I mentioned this to one of our ABA therapists today, because the Wednesday session is cancelled next wek for the event. I was a little taken aback when she replied, "yeah, you'll want him checked for Asperger's. He got enough oddities, I thought you'd get him checked sooner or later." t was a bit of a bite-the-lip moment. Most folsk when I say I'm havig Andy checked for something, they laugh. After all, he does so much better than Joey did at this age. But there are still the random meltdowns. The echoing when he gets upset. The toe-walking. The sensory oddities. The motor-planning and articulation issues.
Joey had OT today, and I sat with some of the other parents in teh waiting room, watching the rain roll in. The sky gets so black, and then it flashed, and came down in sheets. It wasn't as good as a monsoon rain, though. We were in Calcutta, and the rain was so heavy you couldn't see your hand a foot in front of your face, just from water. Or waking up in Allahabad, to find you can't leave the hotel because the courtyard is flooded, and the river was a twenty minute rickshaw drive away yesterday. They brought our breakfast to the verandah. The rude tourists who were with us, they let them wade through the flood to their bus. But not us. We weren't allowed to touch the flood water, too dirty, stay inside today, tomorrow it will be better, Auntie. WE bring the food to you, no problem, we are used to it.
The rain poured all the same, and we had to go home. Mom and Andy were waiting. We waited for the worst to pass through, took a deep breath, and ran. Joey like getting his feet in teh water as it flowed like a river over the parking lot and under the car. He loves water. He would have stood there all evening if I had let him. But into teh car we go, and home through the storm. JOey chats a little about the weather. "It's RAINing. Look at the water. Water, mommy. Rain... sun... rainbow! It's RAINing." I try to think of rain songs, and I hit one he knows from Little Bear (It's raining, it's pouring, the man in the moon is snoring, he went to bed with a cold in his head, and he won't get up 'til morning...) We sing it a few times. HE goes back to the perseveration. It's practically over when we get home.
But there has been a fatal error. Joey's toy shopping cart, that he has been using for the last couple of weeks to track through the house, has been left accidentally outside (where he was tracking on the deck). It's wet, and can't come in teh house like that. Disaster. Now its twenty minutes of "Cart! I want cart! I want cart NOW!" and screaming, as he can se the cart outside, through teh window, but is not permitted to fetch the beloved possession. When the rain stops, I run out and fetch it in, and dry it (and its contents) carefully. But disaster has struck already, and we are off-kilter for the rest of the night.
We'll see what tomorrow looks like, when we rise in the morning.
Joey had OT today, and I sat with some of the other parents in teh waiting room, watching the rain roll in. The sky gets so black, and then it flashed, and came down in sheets. It wasn't as good as a monsoon rain, though. We were in Calcutta, and the rain was so heavy you couldn't see your hand a foot in front of your face, just from water. Or waking up in Allahabad, to find you can't leave the hotel because the courtyard is flooded, and the river was a twenty minute rickshaw drive away yesterday. They brought our breakfast to the verandah. The rude tourists who were with us, they let them wade through the flood to their bus. But not us. We weren't allowed to touch the flood water, too dirty, stay inside today, tomorrow it will be better, Auntie. WE bring the food to you, no problem, we are used to it.
The rain poured all the same, and we had to go home. Mom and Andy were waiting. We waited for the worst to pass through, took a deep breath, and ran. Joey like getting his feet in teh water as it flowed like a river over the parking lot and under the car. He loves water. He would have stood there all evening if I had let him. But into teh car we go, and home through the storm. JOey chats a little about the weather. "It's RAINing. Look at the water. Water, mommy. Rain... sun... rainbow! It's RAINing." I try to think of rain songs, and I hit one he knows from Little Bear (It's raining, it's pouring, the man in the moon is snoring, he went to bed with a cold in his head, and he won't get up 'til morning...) We sing it a few times. HE goes back to the perseveration. It's practically over when we get home.
But there has been a fatal error. Joey's toy shopping cart, that he has been using for the last couple of weeks to track through the house, has been left accidentally outside (where he was tracking on the deck). It's wet, and can't come in teh house like that. Disaster. Now its twenty minutes of "Cart! I want cart! I want cart NOW!" and screaming, as he can se the cart outside, through teh window, but is not permitted to fetch the beloved possession. When the rain stops, I run out and fetch it in, and dry it (and its contents) carefully. But disaster has struck already, and we are off-kilter for the rest of the night.
We'll see what tomorrow looks like, when we rise in the morning.
Tuesday, May 15, 2007
Objections to Early Intervention
The latest on my craw's radar: people who (appear to?) object to early intervention. Remember that my son is five. He is a product of early intervention. I believe in making sure that ALL people get the services and supports they need- that is, early intervention is not about telling other people it is "too late" or an alternative to providing service to older children or adults. Early intervention is identifying children who need services and support as early as possible and providing he service and support they need. It is about trying hard to get kids learning the skills other "normal" kids pick up on their own, and helping them learn to function, to play, to learn about their world and communicate with their fellow human beings.
Although this attitude may not be shared by all folks who believe in early intervention, I can only speak to the attitudes I know. Maybe there are folsk who believe they are curing their kid. I have no such allusions. I am teaching my autistic child to live in a world designed for people who are not autistic.
But the objections to early intervention seem to be something I can't put my finger on. I sometimes have this trouble between when my critical thinking alarm goes off ("there's something wrong with this argument...") and when I actuallyhave time to process what the other person is arguing to be able to pinpoint the problem ("Oh! I see. You think the sky is yellow. Well, that doesn't work.") At this stage in my processing, I can only say that when people scream very loudly and get very upset and start attacking other people because of their parenting choices and semantics of their goal, there is usually something wrong i the argument- especially when they suddenly seem to be in my face.
Sometimes there is something wrong with my own thinking. I'm learning all this too, after all. I am not a perfect savant about autism or even about Joey. I'm no mindreader, and I have to learn what he's thinking and feeling the same way other people do- I'm just better at understanding him than most other people. I understand that I don't know everything. But usually by the time I have ideas that get out here, they've been pretty thought through, so that they are at least reasonable, even if not always right. There is no need for shouting, or getting surly. Present me with new information.
But usually when I have someone surly and sharp telling me what an idiot I am, there is something wrong with that side of things. The assumption of stupidity is a huge red flag. The assumption of lack of research is another red flag. It makes me start to look very carefully at what is being said- and what is being implied.
Back to the case in point: early intervention. So far, there seems to be an anti-early-intervention segment, and they are very, very angry. So far, the objections to early intervention seem to be:
1. You shouldn't medicalize child development.
2. It is impossible to diagnose autism before age 2.
3. Children before age 2 often seem to be autistic.
4. Early intervention is intended to "cure" autistic children.
5. Early intervention services deny services to older children and adults (apparently because the services are intended to "cure" autism.)
Child development is already medicalized. That's why we go to a pediatrician for well-baby appointments every 6 months.
If we had been knowledgeable about autism, we could hav diagnosed Joey before the age of 2- closer to 18 months. He was showing signs while we were still in the hospital, but diagnosing based on sensory problems would probably be very tricky.
My non-autistic child is VERY different from Joey- even with the sensory problems my other child has. With them side-by-side, there is no mistaking that Joey was autistic from birth. I have not met a normal child who "seemed" autistic the way autistic children do before age 2. I have met children with other disabilities who present very similarly to autism. And for the record, Joey did have things like eye contact, smiles, and interest in people as a baby. No one sign is going to give you a diagnosis of anything, much less autism.
Early intervention helps children learn valuable skills and gain functional skills and education that other children "pick up" through imitation and normal processing. It helps autistic children learn how to learn. It does not cure autism.
Early intervention does not eliminate the need for future service, and does nothing at all for people who currently require support and service. It lessens the needs for specific types of service for children who are able to benefit from early intervention.
In Joey's case, the smiles were disappearing. The ability to communicate was not developing. He was becoming increasingly frustrated and upset. WE WERE LOSING HIM. That may be hard for some people to understand. It seems particularly difficult for some autistic adults I have met. From this point of view, I was watching a happy, healthy, loving child turn into a sullen, frustrated, angry child. As a parent, that means something must be done. Now. If I had not moved my butt and gotten him into some kind of intervention, what would have happened to him? I can tell you this: he would not be speaking. He would have remained rustrated and angry. He would have had less and less access to the world around him. I understand that some people think that this is what I should have done- allowed him to "be autistic" and do nothing. I can't please everyone.
Although this attitude may not be shared by all folks who believe in early intervention, I can only speak to the attitudes I know. Maybe there are folsk who believe they are curing their kid. I have no such allusions. I am teaching my autistic child to live in a world designed for people who are not autistic.
But the objections to early intervention seem to be something I can't put my finger on. I sometimes have this trouble between when my critical thinking alarm goes off ("there's something wrong with this argument...") and when I actuallyhave time to process what the other person is arguing to be able to pinpoint the problem ("Oh! I see. You think the sky is yellow. Well, that doesn't work.") At this stage in my processing, I can only say that when people scream very loudly and get very upset and start attacking other people because of their parenting choices and semantics of their goal, there is usually something wrong i the argument- especially when they suddenly seem to be in my face.
Sometimes there is something wrong with my own thinking. I'm learning all this too, after all. I am not a perfect savant about autism or even about Joey. I'm no mindreader, and I have to learn what he's thinking and feeling the same way other people do- I'm just better at understanding him than most other people. I understand that I don't know everything. But usually by the time I have ideas that get out here, they've been pretty thought through, so that they are at least reasonable, even if not always right. There is no need for shouting, or getting surly. Present me with new information.
But usually when I have someone surly and sharp telling me what an idiot I am, there is something wrong with that side of things. The assumption of stupidity is a huge red flag. The assumption of lack of research is another red flag. It makes me start to look very carefully at what is being said- and what is being implied.
Back to the case in point: early intervention. So far, there seems to be an anti-early-intervention segment, and they are very, very angry. So far, the objections to early intervention seem to be:
1. You shouldn't medicalize child development.
2. It is impossible to diagnose autism before age 2.
3. Children before age 2 often seem to be autistic.
4. Early intervention is intended to "cure" autistic children.
5. Early intervention services deny services to older children and adults (apparently because the services are intended to "cure" autism.)
Child development is already medicalized. That's why we go to a pediatrician for well-baby appointments every 6 months.
If we had been knowledgeable about autism, we could hav diagnosed Joey before the age of 2- closer to 18 months. He was showing signs while we were still in the hospital, but diagnosing based on sensory problems would probably be very tricky.
My non-autistic child is VERY different from Joey- even with the sensory problems my other child has. With them side-by-side, there is no mistaking that Joey was autistic from birth. I have not met a normal child who "seemed" autistic the way autistic children do before age 2. I have met children with other disabilities who present very similarly to autism. And for the record, Joey did have things like eye contact, smiles, and interest in people as a baby. No one sign is going to give you a diagnosis of anything, much less autism.
Early intervention helps children learn valuable skills and gain functional skills and education that other children "pick up" through imitation and normal processing. It helps autistic children learn how to learn. It does not cure autism.
Early intervention does not eliminate the need for future service, and does nothing at all for people who currently require support and service. It lessens the needs for specific types of service for children who are able to benefit from early intervention.
In Joey's case, the smiles were disappearing. The ability to communicate was not developing. He was becoming increasingly frustrated and upset. WE WERE LOSING HIM. That may be hard for some people to understand. It seems particularly difficult for some autistic adults I have met. From this point of view, I was watching a happy, healthy, loving child turn into a sullen, frustrated, angry child. As a parent, that means something must be done. Now. If I had not moved my butt and gotten him into some kind of intervention, what would have happened to him? I can tell you this: he would not be speaking. He would have remained rustrated and angry. He would have had less and less access to the world around him. I understand that some people think that this is what I should have done- allowed him to "be autistic" and do nothing. I can't please everyone.
Monday, May 14, 2007
House Hunting
I had a few minutes with my friend Christine this morning. We haven't seen a lot of each other lately. She's the one with the three hydrocephallic boys, and I have my two little guys, so the two of us are definitely hopping. She needed to go to the grocery store this morning. Andy and I were not doing anything at all, so we picked her up for the ride. I have a rental, because my car is in the shop from being rear-ended, and we thought it might be nice to ride around in a new car for a few minutes after we got out of the store.
We drove lazily around town looking at the houses for sale. There are quite a few, because the recent assessments on everyone's property just doubled, and people are being taxed out of town. The problem is, if you sell, where do you go? You have to leave the area. The assessments are obscene, by the way. I have a nice little house. We were very, very lucky to get it, and just a couple years before things started going crazy. It is right in town, and I have made a nice little garden and everything. But it is not worth what this assessment is saying it is worth. Maybe about half. But we're in town, on the east coast, in teh DC metro area. Apparently large numbers of people want to pay way too much money to live here.
Or do they? Several of these houses have been on the market a while.
Anyway, its not like we're planning to move, but it can be fun to wander around and look at other people's houses and gardens. Some need some work. Others are gorgeous. Oh, look at the gingerbread on THAT one! In the midst of this chatter, plans for summer, goals for the boys for summer, what we are going to do with ourselves in teh fall when Andy- the last of our boys- is actually in school two days a week. Dreams of getting housework done, yardwork done, porches repairs, ramps built, couches recovered. Dreams of time.
Generally, my house looks like a bomb went off in it right before the tornado hit. I am not a housekeeper. I keep my life in mounds and piles. If I have no time, those mounds just keep getting bigger, instead of occasionally disappearing. It is also over-run by toys. this partly because of a lack of time, partly because Joey needs almost constantly supervision. Toys invaded our living and dining rooms because of this, when I kept him occupied while I got things done. And then I stopped being able to do things. Both boys get very, very upset if I do stuff. Its very, very strange. And then keeping them engaged is very important, so I spend a lot of time- poor me- playing with them. ;) Having them be able to spend some time outside by themselves has been lif-changing. I can cook dinner- real dinner- every once in a while. Its nice to have some real food.
We're having tacos tonight. I can divide everything on teh plate, so Joey will eat it- even the meat. Yay for dinner!
Once Christina's boys come home, it is a constant schedule of feeding, changing, and trying to get her housework done. The housework usually ends up not happening, but her house always looks neat as a pin. I have no idea how this is done. :P
We drove lazily around town looking at the houses for sale. There are quite a few, because the recent assessments on everyone's property just doubled, and people are being taxed out of town. The problem is, if you sell, where do you go? You have to leave the area. The assessments are obscene, by the way. I have a nice little house. We were very, very lucky to get it, and just a couple years before things started going crazy. It is right in town, and I have made a nice little garden and everything. But it is not worth what this assessment is saying it is worth. Maybe about half. But we're in town, on the east coast, in teh DC metro area. Apparently large numbers of people want to pay way too much money to live here.
Or do they? Several of these houses have been on the market a while.
Anyway, its not like we're planning to move, but it can be fun to wander around and look at other people's houses and gardens. Some need some work. Others are gorgeous. Oh, look at the gingerbread on THAT one! In the midst of this chatter, plans for summer, goals for the boys for summer, what we are going to do with ourselves in teh fall when Andy- the last of our boys- is actually in school two days a week. Dreams of getting housework done, yardwork done, porches repairs, ramps built, couches recovered. Dreams of time.
Generally, my house looks like a bomb went off in it right before the tornado hit. I am not a housekeeper. I keep my life in mounds and piles. If I have no time, those mounds just keep getting bigger, instead of occasionally disappearing. It is also over-run by toys. this partly because of a lack of time, partly because Joey needs almost constantly supervision. Toys invaded our living and dining rooms because of this, when I kept him occupied while I got things done. And then I stopped being able to do things. Both boys get very, very upset if I do stuff. Its very, very strange. And then keeping them engaged is very important, so I spend a lot of time- poor me- playing with them. ;) Having them be able to spend some time outside by themselves has been lif-changing. I can cook dinner- real dinner- every once in a while. Its nice to have some real food.
We're having tacos tonight. I can divide everything on teh plate, so Joey will eat it- even the meat. Yay for dinner!
Once Christina's boys come home, it is a constant schedule of feeding, changing, and trying to get her housework done. The housework usually ends up not happening, but her house always looks neat as a pin. I have no idea how this is done. :P
Sunday, May 13, 2007
Mother's Day
It is a Mother's Day tradition now that my mom and I got to a local, family-run nursery and buy flowers for the yard. These are then ceremonious taken home, and left to dry out in their little plastic pots. Sometimes I get them in the ground and revived. But it sure is fun picking them out.
This year I had the boys pulling the wagon for me. Its one of those moments that hits me oddly. When joey was Andy's age, he did not pull the wagon. He did not try to pull the wagon. I spent most of the time chasing him among the flower-tables, but he never even saw the flowers. He had been in school most of a year, and had about 25 words. If I bothered to move about two feet, I could pick up his baby book and tell you what the 25 words were. "Flower" was not one of them.
This year, Andy was all about the flowers, the wagon, and the brothers wanted Mommy to pull, then Andy wanted to pull Brother (Mom had to help), then Joey wanted to pull, then they both wanted to pull the flowers for me, and they both wanted Grandma to watch. Andy did a lot of hard pulling. We could discuss it as a sensory issue., all the heavy work, but what fun is that? Andy wanted a plant, he got his own grape tomato plant, he LOVES grape tomatoes. I hope we get a chance to plant it together tomorrow. Joey wanted a blue flower. I found some purple verbena, and that seems to do. I also got some geraniums for the front, and some dahlias, and some thyme to spread on the little paths- they'll smell good as boy feet crush them. I may try to track down some more to edge the yard. I have a lot of mint already growing. They didn't have any lemon thyme or pineapple sage, so I'll have to go elsewhere. Before I had boys, we'd get herbs at the Cathedral, but I doubt I'll get up there- again. I'd also like some lamb's ear, because it would be soft and be another good edging, another texture, another smell, and the silvery leaves add another color.
I know- just what SID kids need- a sensory-overload garden.
This year I had the boys pulling the wagon for me. Its one of those moments that hits me oddly. When joey was Andy's age, he did not pull the wagon. He did not try to pull the wagon. I spent most of the time chasing him among the flower-tables, but he never even saw the flowers. He had been in school most of a year, and had about 25 words. If I bothered to move about two feet, I could pick up his baby book and tell you what the 25 words were. "Flower" was not one of them.
This year, Andy was all about the flowers, the wagon, and the brothers wanted Mommy to pull, then Andy wanted to pull Brother (Mom had to help), then Joey wanted to pull, then they both wanted to pull the flowers for me, and they both wanted Grandma to watch. Andy did a lot of hard pulling. We could discuss it as a sensory issue., all the heavy work, but what fun is that? Andy wanted a plant, he got his own grape tomato plant, he LOVES grape tomatoes. I hope we get a chance to plant it together tomorrow. Joey wanted a blue flower. I found some purple verbena, and that seems to do. I also got some geraniums for the front, and some dahlias, and some thyme to spread on the little paths- they'll smell good as boy feet crush them. I may try to track down some more to edge the yard. I have a lot of mint already growing. They didn't have any lemon thyme or pineapple sage, so I'll have to go elsewhere. Before I had boys, we'd get herbs at the Cathedral, but I doubt I'll get up there- again. I'd also like some lamb's ear, because it would be soft and be another good edging, another texture, another smell, and the silvery leaves add another color.
I know- just what SID kids need- a sensory-overload garden.
Saturday, May 12, 2007
For Living Memory
Katie McCarron is about the same age as my Joey. They might have gone to school together. They would have been in the same playgroups, the same classes, gone to the same parties; as they grew, they would have shared the same friends, perhaps met each other in college. My son and I have missed the opportunity to have this beautiful young woman in our lives.
Katie McCarron loved grass. So does Joey. They could have pretended to be lambs together.
HUg your children tight. Love them as they are. God bless Katie McCarron.
Thursday, May 10, 2007
Summertime Nears
I've been having some interesting conversations with some other friends who either have very young children, or very typical children. The complaint of the day appears to be Summer. School is out. What to do with the bairns? Ah, the stress of having to spend time with your little ones, while the days are warm and the sun is up early and to bed late.
From what I have gathered, the typical summer day for "normal" kids goes kind of like this:
Rise: Somewhere in the region of 9 am. If the kids are early risers, then they get up earlier, or know to play quietly until Mom gets out of bed. The 6:30-7 am rise for a school day is clearly relaxed. For preschoolers, the 8 am rise is relaxed to 9.
Breakfast. Most of the mom I know actually cook breakfast, or at least do more than tell their kids to get their own cereal. However, I understand that this may actually be unusual. At any rate, breakfast is served.
Hanging out. Perhaps they will go to the park today. Maybe a ride somewhere. Perhaps there's a special event in town. A trip to Grandma's is always good for an outing. If all else fails, that's what the TV and DVD player are for, or that video game console. '
Lunch. This apparenly can happen anywhere from 11 am to 1 pm, depending on when your bairns rise in the first place. Buy stock in peanut butter, jelly, and chips. Apple orchards are a good bet, too.
Hanging out. Going to the pool is a popular afternoon activity, as Mom gets a chance to chat with other moms while the little ones get cool and wet. Rainy afternoons- well, that's what that TV and DVD player or video game console are for.
Snack. Sometime during the afternoon, the hanging out is disturbed for consumption of sugary and/or salty comestibles, washed down by juice. (Yes, I know many of my readers will be offering actual healthy snacks to their kids. Most of my friends with normal kids don't read this blog.)
More hanging out. If one cannot remain at the pool until dinner, another activity is usually offered, involving the TV and DVD player, or the game console. (I think some of these people need to get that "no electronics until after 5" rule and get some creativity going for engaging these kids.)
Dinner. Mac and cheese, hotdogs, maybe something from the grill. Buy stock in Oscar Meyer. It's going to be BIG. Dinner being consumed somewhere between 6 and 8 pm, with no regularity to when exactly- eat when the mood hits you and the grill is warm enough.
More hanging out. TV and DVD or game console again. No surprise there.
Bedtime. This begins sometime when the kids feel sleepy, anywhere from 9 to 11 pm. Bath, stories, songs, tucked in, and off to dreamland, until tomorrow...
OR:
6 am: drop child at daycare.
6pm: pick up child from daycare.
Take, for contrast, what my summer is going to look like:
Rise: Between 7 and 8 am. No later than 8 am, but I would like to sleep in that long. Dressing ritual commences.
Breakfast: Eaten by 8:30 am.
9 am: OT camp for Joey. This will bein town, so about 10 minutes in the car. Take activities to entertain Andy while waiting for Joey.
10 am- consult with the OT.
10:30-11:30- playground. If it is raining, basement activities: blocks, trains, coloring, painting, something of that sort.
11:45- make lunch. Lunch must be ready by 12 noon. Lunch must be consumed by 12:30, because we have to be in the car promptly at 12:30.
12:30- drive to Speech camp.
1-2:15 Speech Camp for Joey. Activities packed for Andy.
2:15- consult with the speech therapist.
Tuesdays: More speech, 2:45-3:30pm.
Wednesdays: OT 4-5 pm.
Thursdays: OT 3-4 pm. Drum lesson, 5-5:30 pm.
Yet to be Scheduled: OT for Andy and Speech for Andy, once per week each. OT might be 11 am on Mondays, eliminating morning playground on Mondays.
1/2 drive back home.
Also yet to be scheduled: ABA sessions, probably 3 hours per week, to teach safety and communication.
Any spare time in the afternoon will be spent in the back yard or the basement, depending on weather and scheduling of presently unscheduled activities.
Dinner: Promptly at 6 pm.
6pm-7pm: Wind down. Yes, I will probably get out the TV and DVD player, or have them play games from Noggin and Sesame Street.
7 pm- bedtime. Bath, story, song together. story and song each seperate. Lights out. Joey will play in his window until the light fades. Andy will play until he passes out.
On weekends, each and every Saturday I am not working (I don't get a lot of work in the summer) will be taken up by a "field trip." Sundays will have Sunday school and a ride to a closer destination or visit to Grandma.
There will be no room for variation, unless someone gets physically ill.
When the conversation turns to "summer woes," I realy have nothing to say. What they are talking about sounds like a wonderful, relaxing life to me. If I mention what my days look like, they glaze over and start talking about the pool. I can't take my kids to the pool by myself.
My friends and I share one thing: we both are holding on for Fall, when kids go back to school. In their view, they will get their lives "back". In my view, I will get two hours twice per week to clean, vacuum, do laundry, cut the lawn, try to get caught up on repairs, and at Christmas, clean and decorate and bake cookies (mmmm... cookies...) At least I will get lots of time to play with Andy. I am already putting together a otebook of ideas for portable projects and activities that can be done in waiting rooms and office playrooms. :)
From what I have gathered, the typical summer day for "normal" kids goes kind of like this:
Rise: Somewhere in the region of 9 am. If the kids are early risers, then they get up earlier, or know to play quietly until Mom gets out of bed. The 6:30-7 am rise for a school day is clearly relaxed. For preschoolers, the 8 am rise is relaxed to 9.
Breakfast. Most of the mom I know actually cook breakfast, or at least do more than tell their kids to get their own cereal. However, I understand that this may actually be unusual. At any rate, breakfast is served.
Hanging out. Perhaps they will go to the park today. Maybe a ride somewhere. Perhaps there's a special event in town. A trip to Grandma's is always good for an outing. If all else fails, that's what the TV and DVD player are for, or that video game console. '
Lunch. This apparenly can happen anywhere from 11 am to 1 pm, depending on when your bairns rise in the first place. Buy stock in peanut butter, jelly, and chips. Apple orchards are a good bet, too.
Hanging out. Going to the pool is a popular afternoon activity, as Mom gets a chance to chat with other moms while the little ones get cool and wet. Rainy afternoons- well, that's what that TV and DVD player or video game console are for.
Snack. Sometime during the afternoon, the hanging out is disturbed for consumption of sugary and/or salty comestibles, washed down by juice. (Yes, I know many of my readers will be offering actual healthy snacks to their kids. Most of my friends with normal kids don't read this blog.)
More hanging out. If one cannot remain at the pool until dinner, another activity is usually offered, involving the TV and DVD player, or the game console. (I think some of these people need to get that "no electronics until after 5" rule and get some creativity going for engaging these kids.)
Dinner. Mac and cheese, hotdogs, maybe something from the grill. Buy stock in Oscar Meyer. It's going to be BIG. Dinner being consumed somewhere between 6 and 8 pm, with no regularity to when exactly- eat when the mood hits you and the grill is warm enough.
More hanging out. TV and DVD or game console again. No surprise there.
Bedtime. This begins sometime when the kids feel sleepy, anywhere from 9 to 11 pm. Bath, stories, songs, tucked in, and off to dreamland, until tomorrow...
OR:
6 am: drop child at daycare.
6pm: pick up child from daycare.
Take, for contrast, what my summer is going to look like:
Rise: Between 7 and 8 am. No later than 8 am, but I would like to sleep in that long. Dressing ritual commences.
Breakfast: Eaten by 8:30 am.
9 am: OT camp for Joey. This will bein town, so about 10 minutes in the car. Take activities to entertain Andy while waiting for Joey.
10 am- consult with the OT.
10:30-11:30- playground. If it is raining, basement activities: blocks, trains, coloring, painting, something of that sort.
11:45- make lunch. Lunch must be ready by 12 noon. Lunch must be consumed by 12:30, because we have to be in the car promptly at 12:30.
12:30- drive to Speech camp.
1-2:15 Speech Camp for Joey. Activities packed for Andy.
2:15- consult with the speech therapist.
Tuesdays: More speech, 2:45-3:30pm.
Wednesdays: OT 4-5 pm.
Thursdays: OT 3-4 pm. Drum lesson, 5-5:30 pm.
Yet to be Scheduled: OT for Andy and Speech for Andy, once per week each. OT might be 11 am on Mondays, eliminating morning playground on Mondays.
1/2 drive back home.
Also yet to be scheduled: ABA sessions, probably 3 hours per week, to teach safety and communication.
Any spare time in the afternoon will be spent in the back yard or the basement, depending on weather and scheduling of presently unscheduled activities.
Dinner: Promptly at 6 pm.
6pm-7pm: Wind down. Yes, I will probably get out the TV and DVD player, or have them play games from Noggin and Sesame Street.
7 pm- bedtime. Bath, story, song together. story and song each seperate. Lights out. Joey will play in his window until the light fades. Andy will play until he passes out.
On weekends, each and every Saturday I am not working (I don't get a lot of work in the summer) will be taken up by a "field trip." Sundays will have Sunday school and a ride to a closer destination or visit to Grandma.
There will be no room for variation, unless someone gets physically ill.
When the conversation turns to "summer woes," I realy have nothing to say. What they are talking about sounds like a wonderful, relaxing life to me. If I mention what my days look like, they glaze over and start talking about the pool. I can't take my kids to the pool by myself.
My friends and I share one thing: we both are holding on for Fall, when kids go back to school. In their view, they will get their lives "back". In my view, I will get two hours twice per week to clean, vacuum, do laundry, cut the lawn, try to get caught up on repairs, and at Christmas, clean and decorate and bake cookies (mmmm... cookies...) At least I will get lots of time to play with Andy. I am already putting together a otebook of ideas for portable projects and activities that can be done in waiting rooms and office playrooms. :)
Between the Rock and the Hard Place
Well, the jury is in... Andy's articulation problems, according to the insurance, are an educational problem tha should be addressed by the school. According to the school, he isnt actually developmentally delayed by the problem, so it ain't their problem. I can't send him to regular school when no one can understand a word he says. Where have we done this dance before?
So please, everybody buy t-shirts. :P Anybody want to have a bake sale?
So please, everybody buy t-shirts. :P Anybody want to have a bake sale?
Wednesday, May 09, 2007
Just some thoughts about gratitude
I've been reading a lot of blogs lately, and especially Musings of a Highly Trained Monkey (did that work? I'm new to this linking thing). Its a blog about working in the ER, and it has a lot of insights about different kinds of people who present themselves to the ER. Around here, ER bashing is a spectator sport. The local hospital is infamous for poor service, overpriced doctors, and sending people home with inappropriate medications. In fact, there's a lot of bashing of other people and complaining and whining that seems to go on here and there in places I've kind given up visiting because now that I have Autism Hub blogs to read, and there is a LOT less negativity there. But anyway, on to the random thoughts...
I will never forget the people who came to take care of my Joey when he had the croup and was turning blue. Those were incredible, amazing people. I hope they aren't too surprised when I call and ask if Joey can come see the ambulance station this summer, and thank them personally. They hopped right in, made him feel comfortable, let him know everything was going to be just fine, so that for Joey, it was just a fun adventure by the time we got to the ER. The ER nurse was hilarious. He knew a freaking-out-parent when he saw one. Even the nurse who was changing sheets stopped to talk to Joey and try to find cartoons for him on the TV. These people took a situation that was potentially terrifying for my child, and made it into something that included laughter, smiles, and new friends. They made a situation that was terribly stressful on us and made it a walk in the park. I have no idea if they thought I was some stupid person calling 911 over croup. They seemed to be more interested in the fact that they had a child in their care, and to make that child comfortable. We are forever grateful.
On that note, I'd also like to thank the lady in the grocery store the other day who was trying very hard to get Joey to talk with her. He wasn't feeling that great, so he was echoing the questions instead of answering them, yet she remained pleasant and undeterred. She didn't ask, she didn't frown, and she didn't treat him like an idiot or a spoiled brat. She took him as he was, and when his own words failed him, she provided some, without being annoying.
I'd like to thank the bongo drummer at our church who this last Saturday let Joey get up and actually play the drum with the band while they were performing. You could see that Joey thought this was the coolest moment ever. This person has started bringing kazoos to Saturday servicce for the kids. Joey now has two. He plays them all the time (and so does Andy, when he gets hold of one.)
I'd also like to thank the lady who works for Enterprise at our local body shop, who called to get an appropriate vehicle for us and made sure it was waiting for us when we arrived on Tuesday, knowing I had two sick little guys I had to bring with me. I just transferred the carseats and we were on our way. In that vein, I'd like to thank the police officer and the lady that rearended us for being so polite and making a bit of fuss over my boys in making sure they were OK, and telling me how handsome they are. I know how hard it can be to stay nice when you're having a hard day.
And I'd like to thank all the folks who have been leaving me comments here. Sometimes it is just nice to know you're not alone out here.
I will never forget the people who came to take care of my Joey when he had the croup and was turning blue. Those were incredible, amazing people. I hope they aren't too surprised when I call and ask if Joey can come see the ambulance station this summer, and thank them personally. They hopped right in, made him feel comfortable, let him know everything was going to be just fine, so that for Joey, it was just a fun adventure by the time we got to the ER. The ER nurse was hilarious. He knew a freaking-out-parent when he saw one. Even the nurse who was changing sheets stopped to talk to Joey and try to find cartoons for him on the TV. These people took a situation that was potentially terrifying for my child, and made it into something that included laughter, smiles, and new friends. They made a situation that was terribly stressful on us and made it a walk in the park. I have no idea if they thought I was some stupid person calling 911 over croup. They seemed to be more interested in the fact that they had a child in their care, and to make that child comfortable. We are forever grateful.
On that note, I'd also like to thank the lady in the grocery store the other day who was trying very hard to get Joey to talk with her. He wasn't feeling that great, so he was echoing the questions instead of answering them, yet she remained pleasant and undeterred. She didn't ask, she didn't frown, and she didn't treat him like an idiot or a spoiled brat. She took him as he was, and when his own words failed him, she provided some, without being annoying.
I'd like to thank the bongo drummer at our church who this last Saturday let Joey get up and actually play the drum with the band while they were performing. You could see that Joey thought this was the coolest moment ever. This person has started bringing kazoos to Saturday servicce for the kids. Joey now has two. He plays them all the time (and so does Andy, when he gets hold of one.)
I'd also like to thank the lady who works for Enterprise at our local body shop, who called to get an appropriate vehicle for us and made sure it was waiting for us when we arrived on Tuesday, knowing I had two sick little guys I had to bring with me. I just transferred the carseats and we were on our way. In that vein, I'd like to thank the police officer and the lady that rearended us for being so polite and making a bit of fuss over my boys in making sure they were OK, and telling me how handsome they are. I know how hard it can be to stay nice when you're having a hard day.
And I'd like to thank all the folks who have been leaving me comments here. Sometimes it is just nice to know you're not alone out here.
Recovery from Waxing
So Joey sems finally on the mend. We even withstood our ABA therapy for the day, and ate solid food.
Now, remember Joey has not eaten anything in two days. He is drinking juice for me, but I've beenhaving a hard time reintroducing solids, so I haven't pushed it. I provided some crackers and some goldfish, but no go. This afternoon, however, Andy was hungry and let me know it; and JOey joined in the chorus. What do they want?
Cookies.
I was making some for Allan's work (they are having a party or something), so it was known that chocolate-chip delights were in the house. However, since they both have been down-in-the-mouth, I wasn't too worried about it. Silly me.
Now, remember Joey has not eaten anything in two days. He is drinking juice for me, but I've beenhaving a hard time reintroducing solids, so I haven't pushed it. I provided some crackers and some goldfish, but no go. This afternoon, however, Andy was hungry and let me know it; and JOey joined in the chorus. What do they want?
Cookies.
I was making some for Allan's work (they are having a party or something), so it was known that chocolate-chip delights were in the house. However, since they both have been down-in-the-mouth, I wasn't too worried about it. Silly me.
Tuesday, May 08, 2007
Jargon
"What do you need, Andy?"
"awatirnsursrecth."
"Take your thumb out of your mouth, and speak to me sweetie."
"AAAAAAAAA!AWATIRNSURSRECTH!"
"You want something?" "AAAAAAAA!" "What do you want, honey?"
"AWATIRNSURSRECTH!!!!"
"You want a tyrannosaurus rex?"
"Yeth! T-REX!"
"It's in your hand, sweetheart."
"NOOOOOOOOO! T-rex. T-RECTH!"
"You want to watch your T-rex show?"
"YeeeeeeEEEEEEEEEEEEEETH!"
"Sure, we can watch that."
Andy is feeling better. Joey is not, but he's not waxing. I'm feeling like crap, but not waxing yet. Trying to keep a little guy who is feeling as well as he's felt in a week occupied, while you and the other child feel like you've been repeatedly run ver by a Mack truck (or was it a Peterbilt?) can be quite the adventure. I hate to have him watch TV and play with puzzles and whatever all day, when it is gorgoues and he could use the sunshine, but I have to have two eyes on Joey, eve while he's sleeping. Yesterday, he was running both ends, even in his sleep. It might hav been accomplished better if I was feelign OK, and could hang out half-in and half-out of the house, but the less I move, the better. Even typing is exhausting.
The little sample above is actually pretty clear speech for my little Andy. I also know he's a dinosaur freak, and his favorite show, so deciphering the wails wasn't too too difficult. He also has a lot of practice saying these words. Sometimes it brings me to tears trying to figure out what he wants or needs, sifting through the sounds like Sherlock Holmes untangling a code. I'll be glad when we come through the summer and he's had a few onths of speech therapy under his belt. It has to be frustrating for him, poor little boy.
"awatirnsursrecth."
"Take your thumb out of your mouth, and speak to me sweetie."
"AAAAAAAAA!AWATIRNSURSRECTH!"
"You want something?" "AAAAAAAA!" "What do you want, honey?"
"AWATIRNSURSRECTH!!!!"
"You want a tyrannosaurus rex?"
"Yeth! T-REX!"
"It's in your hand, sweetheart."
"NOOOOOOOOO! T-rex. T-RECTH!"
"You want to watch your T-rex show?"
"YeeeeeeEEEEEEEEEEEEEETH!"
"Sure, we can watch that."
Andy is feeling better. Joey is not, but he's not waxing. I'm feeling like crap, but not waxing yet. Trying to keep a little guy who is feeling as well as he's felt in a week occupied, while you and the other child feel like you've been repeatedly run ver by a Mack truck (or was it a Peterbilt?) can be quite the adventure. I hate to have him watch TV and play with puzzles and whatever all day, when it is gorgoues and he could use the sunshine, but I have to have two eyes on Joey, eve while he's sleeping. Yesterday, he was running both ends, even in his sleep. It might hav been accomplished better if I was feelign OK, and could hang out half-in and half-out of the house, but the less I move, the better. Even typing is exhausting.
The little sample above is actually pretty clear speech for my little Andy. I also know he's a dinosaur freak, and his favorite show, so deciphering the wails wasn't too too difficult. He also has a lot of practice saying these words. Sometimes it brings me to tears trying to figure out what he wants or needs, sifting through the sounds like Sherlock Holmes untangling a code. I'll be glad when we come through the summer and he's had a few onths of speech therapy under his belt. It has to be frustrating for him, poor little boy.
Sunday, May 06, 2007
More Waxing
Oh joy. Now they are both waxing. Lovely.
If I don't write for a bit... wish me luck. :P
If I don't write for a bit... wish me luck. :P
Saturday, May 05, 2007
Waxing
I now have our first hint at original, non-scripted, totally spontaneous speech. Whenever someone spits (or spits up), or in fact when anything comes out of someone's mouth, Joey calls it "waxing." We have no clue why.
Andy is still throwing up. We had an unfortunate performance at dinner, and Joey immediately got upset, since he doesn't like messes: "Andy is WAXING!"
So when everyone started calming down, and all that was left was Joey's perservertation ("Andy is waxing.... waxing, Mommy... Andy's waxing!") we asked: why waxing? What does "waxing" mean?
"Joey," Allan asked calmly, "does 'waxing' mean you're sick?"
"Yes," Joey replied. He usually replies "yes" to a "yes/no" question. "Andy is waxing on the floor."
"Why is it 'waxing'?" we asked. Unfortunately, the response to this was so completely incoherent, I couldn't tell you exactly what he said... but it obviously made sense to him.
So "waxing" it is.
Andy is still throwing up. We had an unfortunate performance at dinner, and Joey immediately got upset, since he doesn't like messes: "Andy is WAXING!"
So when everyone started calming down, and all that was left was Joey's perservertation ("Andy is waxing.... waxing, Mommy... Andy's waxing!") we asked: why waxing? What does "waxing" mean?
"Joey," Allan asked calmly, "does 'waxing' mean you're sick?"
"Yes," Joey replied. He usually replies "yes" to a "yes/no" question. "Andy is waxing on the floor."
"Why is it 'waxing'?" we asked. Unfortunately, the response to this was so completely incoherent, I couldn't tell you exactly what he said... but it obviously made sense to him.
So "waxing" it is.
Special Ed Games, Part 354
Joey went over to the elementary school this week with a couple other kids who are going over next year, to check it out (andbe checked out). I got the word the day before. Not much time to prepare a little guy for a big event. They slapped a sticker on his back to identify him, and off they went.
He had a pretty good day, but when he got back to his own school, he walked into a pole, then got upset that his sticker got torn. then he was upset about sing the bathroom (not his favorite thing to do in the first place), and ended up not eating much lunch, but was apparently able to join the class at the table for milk.
I replied to this narration of events with a bit of surprise that they were surprised. They turned his schedule upside down, with practically no notice. Fortunately, it was ABA and OT day, and I got him mostly reigned in, but I know he was upset because he wouldn't talk about it at all, not even with yes/no questions. The therapies headed off the brunt of the repercussions by immiedately providing familiar structure and specialized sensory input. He's had a pretty good week, just still not talking about his "adventure" and a little persnickety, nothing I would consider major.
The teacher's response was that it coudn't have been the change in schedule, because he was so happy during the day in the new school: "So in my view the trip and change in schedule were not the causes for the breakdown because he seemed happy and flexible the entire time we were on the bus and at Hugh Mercer."
Doesn't this person realize that when she makes these changes, it impacts us here at home? That he can hold it together in the moment and even at school, but that overload results in breakdown at home? What is the deal here? If this trip ha been on Tuesday, when all we have is speech, instead of Wednesday, it may have been days before Joey was back on track and not hair-trigger for meltdown.
Meanwhile, Andy was doing better yesterday, but today is back down. I've called the clinic. We'll see if we get new meds.
He had a pretty good day, but when he got back to his own school, he walked into a pole, then got upset that his sticker got torn. then he was upset about sing the bathroom (not his favorite thing to do in the first place), and ended up not eating much lunch, but was apparently able to join the class at the table for milk.
I replied to this narration of events with a bit of surprise that they were surprised. They turned his schedule upside down, with practically no notice. Fortunately, it was ABA and OT day, and I got him mostly reigned in, but I know he was upset because he wouldn't talk about it at all, not even with yes/no questions. The therapies headed off the brunt of the repercussions by immiedately providing familiar structure and specialized sensory input. He's had a pretty good week, just still not talking about his "adventure" and a little persnickety, nothing I would consider major.
The teacher's response was that it coudn't have been the change in schedule, because he was so happy during the day in the new school: "So in my view the trip and change in schedule were not the causes for the breakdown because he seemed happy and flexible the entire time we were on the bus and at Hugh Mercer."
Doesn't this person realize that when she makes these changes, it impacts us here at home? That he can hold it together in the moment and even at school, but that overload results in breakdown at home? What is the deal here? If this trip ha been on Tuesday, when all we have is speech, instead of Wednesday, it may have been days before Joey was back on track and not hair-trigger for meltdown.
Meanwhile, Andy was doing better yesterday, but today is back down. I've called the clinic. We'll see if we get new meds.
Thursday, May 03, 2007
The Good With the Bad
Joey had an excellent extra-primo day today. This was a bit of a surprise, since his schedule was all screwed up yesterday by a field trip to the elementary school, but I'll take it. :) His ABA therapist said he worked really hard for her, and then his OT was really happy with him- they are making a special project that requires cutting, and apparently he's doing it all by himself- and then our music lesson was brilliant. In the past, Joey hasn't wanted to watch and focus on the teacher, he's just wanted to bang on the drums. Today, he paid attention pretty well and followed the lesson along, and played the rhythms (or at least tried to). I am so proud of him! He even alternated the sticking! What a star!
Andy, however, was terribly sick all day. He threw up until about 4 this morning. He kept down some juice and toast for me during the day, but I came home from therapies to a report of a baby throwing up. He slept a lot. He just looked awful. I took him over to the doctor. We have a set of clinics in this area that take walk-ins, and we use them a lot for when the boys are actually sick, because trying to get in to see a doctor around here is always a couple days' wait. I don't know about you, but I certainly wouldn't want a pounding headache-ear infection for two days before I could even get in to a doctor; why would I make a 2-year-old wait two days? I'm probably the kind of parent most docs hate anyway- since my boys can't really tell me what's going on, if they act in certain, unusual ways, I take them in. Tell me its a virus if that's what it is, but please check them, just in case. I think I've been "wrong" once- and two days later, we were back with an ear infection. :P
So I take my bundle of dead weight over to our usual clinic. The problem with walk0in clinics is you never know who the doctor is going to be, and they have a rather high rate of turnover and musical-chairs. However, I've never been outright refused service before. They've hired someone who won't see children. What's up with THAT? At a walk-in clinic that a good many folks use as primary care? You're joking, right? But no- I was told to call my pediatrician (why would I be standing in a walk-in clinic if my pediatrician would see me at 7 o'clock on a Thursday night?) or go to the emergency room (um... the kid isn't in mortal danger. He just needs you to look in his ears). Fortunately, there's also a location in the next town over, so we called ahead (in case I ran into traffic and got there after closing) and off we went. Those people saw us just fine. Double ear infection. Start a new round of Zithromax and see what happens. Woo-hoo!
So far, his fever seems o be down, and he's sleeping, and hasn't tossed the medicine back up. Knock on wood, I think he might get some real rest tonight!
Andy, however, was terribly sick all day. He threw up until about 4 this morning. He kept down some juice and toast for me during the day, but I came home from therapies to a report of a baby throwing up. He slept a lot. He just looked awful. I took him over to the doctor. We have a set of clinics in this area that take walk-ins, and we use them a lot for when the boys are actually sick, because trying to get in to see a doctor around here is always a couple days' wait. I don't know about you, but I certainly wouldn't want a pounding headache-ear infection for two days before I could even get in to a doctor; why would I make a 2-year-old wait two days? I'm probably the kind of parent most docs hate anyway- since my boys can't really tell me what's going on, if they act in certain, unusual ways, I take them in. Tell me its a virus if that's what it is, but please check them, just in case. I think I've been "wrong" once- and two days later, we were back with an ear infection. :P
So I take my bundle of dead weight over to our usual clinic. The problem with walk0in clinics is you never know who the doctor is going to be, and they have a rather high rate of turnover and musical-chairs. However, I've never been outright refused service before. They've hired someone who won't see children. What's up with THAT? At a walk-in clinic that a good many folks use as primary care? You're joking, right? But no- I was told to call my pediatrician (why would I be standing in a walk-in clinic if my pediatrician would see me at 7 o'clock on a Thursday night?) or go to the emergency room (um... the kid isn't in mortal danger. He just needs you to look in his ears). Fortunately, there's also a location in the next town over, so we called ahead (in case I ran into traffic and got there after closing) and off we went. Those people saw us just fine. Double ear infection. Start a new round of Zithromax and see what happens. Woo-hoo!
So far, his fever seems o be down, and he's sleeping, and hasn't tossed the medicine back up. Knock on wood, I think he might get some real rest tonight!
Going to be a Long Night
We had a Special Education Parent Advisory meeting this evening. This is a meeting where parents of kids with special needs are supposed to meet and advise the school personnel about what the school needs to be doing to help these kids. What it actually entails is the school personnel running their mouths as long as possible until the meeting is adjourned and the same five parents can go drinking together and complain about school personnel. I am the Fearless Leader (Chair) of this glorious event. hree years ago when I took on this mission, I thought I could do some good. Oh, the naiveté.
Only one other parent was game for drinking tonight, so we hung out and chattered about what summer was shaping up to for us, and then I went home... to find that I have a child that has been upchucking since bedtime. So about every half-hour, there is this funny cough throught he bay monitor, and I'm off to clean the room again. I have no idea how such a little child can hold so much fluid. But it just keeps coming.
So I'm goign to read some blogs and wait it out- at least until Blankie comes out of the dryer.
Only one other parent was game for drinking tonight, so we hung out and chattered about what summer was shaping up to for us, and then I went home... to find that I have a child that has been upchucking since bedtime. So about every half-hour, there is this funny cough throught he bay monitor, and I'm off to clean the room again. I have no idea how such a little child can hold so much fluid. But it just keeps coming.
So I'm goign to read some blogs and wait it out- at least until Blankie comes out of the dryer.
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