Winter came back today and beat up spring. More snow on the mountains. Spring is supposed to make an amazing comeback and pants winter. In the meantime, my window is cold.
I'm really, really tired.
I've got 40 papers to correct, a CD to create, a form to create, a paper to write a draft of, and my allergies and asthma are kicking my ass.
On the plus side, today, I made headway on the CD, three loads of laundry, and dinner got cooked last night, so it's just reheatable tonight.
I was supposed to do an observation today, but LaDawn was sick, so I left her alone. I should have done it anyway, but I don't want her disease. Mike said he was queasy and I refused to smooch him. I have a root canal on Tuesday. I can't afford to be sick.
Amped and tired. I'm sooo weird.
Friday, March 26, 2004
Wednesday, March 24, 2004
I fell apart tonight in my families' class. She was lecturing about how self-esteem for families of special needs kids is an issue and she read us quotes from a friend of hers she'd interviewed that said that it was particularly validating when a professional recognized what a good mom she was. It hit me how little validation of that nature I've had.
I think the double punch was the further commentary about how this parent never felt like their day was done -- how she'd stayed up half the night with her sick child and hadn't gotten to writing letters to politicians voting on issues critical to the services the government might provide her son and how she felt like it was her responsibility to know IDEA inside and out and to be the ultimate advocate for her child.
That did it.
I had to leave for a half hour and bawl my eyes out. I sat and talked with the department secretary who knows a lot of the stuff I've been going through and she gave me hankies and we just talked. Afterwards, I went downstairs and stopped at the afterschool program where my reading tutee from last semester was and said,"Hi!" I then had 4 little girls 8-9 years old perform the school song because we're in the NCAA sweet 16. They did it to show me what they'd done to get on the local news channel. Then they wrote me a note telling me how it was at 525 on Channel 2. I hugged R. and went back to class.
Through class, I held onto that note and just remembered all the good I can do.
Somewhere in class, the professor talked about that having a kid with a disability is NOT a grieving process. A grieving process means that it ends and raising a child with a disability does not end. It's an ongoing process. She drew a picture of a spring. She said parents will spiral upwards and something will be said or done and they'll go back to the bottom of that spring again.
I thought about waiting for the professor and apologizing, but I decided I'd end up in tears again and I had to drive home, so I wrote her this email.
Sorry for having to leave for a bit.
I hit the bottom of that spring again tonight from
listening to the Tracy quotes. I am struck by how
little affirmation I have ever gotten from
professionals and in fact, how much deriding,
insulting, and implied crap I have gotten from not
only the schools, but my in-laws, while I have been
working my fool head off trying to figure out how to
help my son be the math professor or engineer that he
dreams about being.
Before medication, my son would have thermo-nuclear
meltdowns in public. When he was 3, I could pick him
up, put him in the car and drive away from prying
eyes. When he was 9, I had to pick up my 65 lb child
from the middle of the road, where he had thrown
himself in a tantrum. I asked him to sit on the car
bumper and I was physically, just getting him off the
road and pulling him to the bumper. Because he was
angry, he chose to stiffen his body and he ended up
splayed on the hood instead, screaming blood murder
that I'd picked him up off the road. People were
walking by looking at me as though I must be beating
my child, when I was just trying to get him safe and
calm. I finally got him to sit on the bumper and
after a 15 minute time out, he finally came clean and
informed me that he had lied and NOT taken his
medication. I had to ground him for a week because
that's the punishment for lying in our family, so he
screamed and cried more. I told him, he needed to
stop or I could not drive him home to get his
medication, which he obviously needed. He snuffled
all the way home and the entire way, all I could think
about was what a rotten parent I was. I couldn't get
the vision of him splayed on the hood out of my head
and how absolutely awful I felt and how awful he must
feel to be so out of control. I know in my head I am
not a bad parent, but I *felt* like a bad parent. And
how those pedestrians walking by looked at us will
stay with me forever.
Also, I often feel completely ineffective in my
advocacy for my son. I know I am getting better and
learning more all the time, but this is my son. My
beautiful brown-eyed angel boy being called "lazy"
and "unmotivated" just makes me sad. That means that
the school isn't recognizing the good things in him
and is not recognizing his condition, and
particularly, they are not noticing how bonebreakingly
hard he is working all the time, nor how hard we are
working with him, so he can live his dreams.
While the diagnosis of cerebral palsy will help some
of that, I am not always ready to deal with the pity I
see in people when I tell them he has cerebral palsy
and ADHD, any more than I was prepared to deal with
the school's complete ignorance about his ADHD before
his cerebral palsy diagnosis.
I would have stayed to talk, but after examining my
fragility level I realized I'd end up in tears again
and it took me a while to get calm the first time, so
I decided I'd write.
The neurology appointment for our first opinion is on
Monday. My root canal is Tuesday. In some ways, I
think the root canal will be a lot easier.
I think the double punch was the further commentary about how this parent never felt like their day was done -- how she'd stayed up half the night with her sick child and hadn't gotten to writing letters to politicians voting on issues critical to the services the government might provide her son and how she felt like it was her responsibility to know IDEA inside and out and to be the ultimate advocate for her child.
That did it.
I had to leave for a half hour and bawl my eyes out. I sat and talked with the department secretary who knows a lot of the stuff I've been going through and she gave me hankies and we just talked. Afterwards, I went downstairs and stopped at the afterschool program where my reading tutee from last semester was and said,"Hi!" I then had 4 little girls 8-9 years old perform the school song because we're in the NCAA sweet 16. They did it to show me what they'd done to get on the local news channel. Then they wrote me a note telling me how it was at 525 on Channel 2. I hugged R. and went back to class.
Through class, I held onto that note and just remembered all the good I can do.
Somewhere in class, the professor talked about that having a kid with a disability is NOT a grieving process. A grieving process means that it ends and raising a child with a disability does not end. It's an ongoing process. She drew a picture of a spring. She said parents will spiral upwards and something will be said or done and they'll go back to the bottom of that spring again.
I thought about waiting for the professor and apologizing, but I decided I'd end up in tears again and I had to drive home, so I wrote her this email.
Sorry for having to leave for a bit.
I hit the bottom of that spring again tonight from
listening to the Tracy quotes. I am struck by how
little affirmation I have ever gotten from
professionals and in fact, how much deriding,
insulting, and implied crap I have gotten from not
only the schools, but my in-laws, while I have been
working my fool head off trying to figure out how to
help my son be the math professor or engineer that he
dreams about being.
Before medication, my son would have thermo-nuclear
meltdowns in public. When he was 3, I could pick him
up, put him in the car and drive away from prying
eyes. When he was 9, I had to pick up my 65 lb child
from the middle of the road, where he had thrown
himself in a tantrum. I asked him to sit on the car
bumper and I was physically, just getting him off the
road and pulling him to the bumper. Because he was
angry, he chose to stiffen his body and he ended up
splayed on the hood instead, screaming blood murder
that I'd picked him up off the road. People were
walking by looking at me as though I must be beating
my child, when I was just trying to get him safe and
calm. I finally got him to sit on the bumper and
after a 15 minute time out, he finally came clean and
informed me that he had lied and NOT taken his
medication. I had to ground him for a week because
that's the punishment for lying in our family, so he
screamed and cried more. I told him, he needed to
stop or I could not drive him home to get his
medication, which he obviously needed. He snuffled
all the way home and the entire way, all I could think
about was what a rotten parent I was. I couldn't get
the vision of him splayed on the hood out of my head
and how absolutely awful I felt and how awful he must
feel to be so out of control. I know in my head I am
not a bad parent, but I *felt* like a bad parent. And
how those pedestrians walking by looked at us will
stay with me forever.
Also, I often feel completely ineffective in my
advocacy for my son. I know I am getting better and
learning more all the time, but this is my son. My
beautiful brown-eyed angel boy being called "lazy"
and "unmotivated" just makes me sad. That means that
the school isn't recognizing the good things in him
and is not recognizing his condition, and
particularly, they are not noticing how bonebreakingly
hard he is working all the time, nor how hard we are
working with him, so he can live his dreams.
While the diagnosis of cerebral palsy will help some
of that, I am not always ready to deal with the pity I
see in people when I tell them he has cerebral palsy
and ADHD, any more than I was prepared to deal with
the school's complete ignorance about his ADHD before
his cerebral palsy diagnosis.
I would have stayed to talk, but after examining my
fragility level I realized I'd end up in tears again
and it took me a while to get calm the first time, so
I decided I'd write.
The neurology appointment for our first opinion is on
Monday. My root canal is Tuesday. In some ways, I
think the root canal will be a lot easier.
Monday, March 22, 2004
I am getting really annoyed.
My MIL is really pushing. She keeps sending these syrupy emails to me that are inferences to demonstrate that she thinks I'm a great mom. They're those stupid email forward things that blather poetic that I think if they came from anyone else, I would tolerate them, skim them, and hit delete. However, being that they are from the woman who has made it clear in no uncertain terms that she thinks I suck, I'm made a little nauseous by them.
I guess I'm not won over easily by platitudes in light of behavior that has truly demonstrated that she doesn't actually hold me in any light other than the cold plastic glow of contempt. At this point, the feeling is mutual.
And email that reeks of hypocrisy is nothing short of insulting.
I know she's been trying to see if she can come "visit" sooner, however, I am done. In my fantasy, I am not here because I am certain that I'll have determined that I have other stuff to do in a different state that must be done the week she comes because the thought of having to deal with her in my home around my children makes me ill. The drag is that logisitically that is not possible without fucking up Mike because he'll be in the middle of his annual massive overtime gig, which means I'll be single parenting 16 hours a day, and even if he isn't, it'll be sticking him in the role of singleparenting which is not bad, but is hard and stressful on him. However, the thought of entertaining my mother-in-law, while being under her constant scrutiny with the security that she'll make commentary about how with her kids she did everything differently and the constant inference being what a rotten mother I am is truly an anti-thrill -- under the category of chewing glass, undergoing a root canal, and giving birth, simultaneously. The thought of doing that without Mike's support is unthinkable.
Yeah, come to my house, put my parenting under a microscope and tell me how you'd do things differently. Yup, we all saw how your parenting worked out. I guess one drug addict out of 4 isn't a bad average. Yeesh!
Mike is already writing the email that delineates what dates in the next several months will work and what dates won't work around his schedule. Of course, if he mentions that I'm considering leaving the state, he's getting a purple nurple.
I just don't want to deal with her shit. What cool about this time, is that my husband will stand up for me and we can always send her out of the house. He's also making it clear that she'll be staying in a hotel and has even offered to pay for it -- I told Mike,"Just say you'd be happy to pay for a hotel." Mike said,"I'd be 'happy' to pay for it?" I asked,"Okay, do you want your mom to stay here?" He basically did the "hell-no!" headshake and hurriedly typed how happy he would be to pay for her room.
I love my husband. I'm glad he loves me.
My MIL is really pushing. She keeps sending these syrupy emails to me that are inferences to demonstrate that she thinks I'm a great mom. They're those stupid email forward things that blather poetic that I think if they came from anyone else, I would tolerate them, skim them, and hit delete. However, being that they are from the woman who has made it clear in no uncertain terms that she thinks I suck, I'm made a little nauseous by them.
I guess I'm not won over easily by platitudes in light of behavior that has truly demonstrated that she doesn't actually hold me in any light other than the cold plastic glow of contempt. At this point, the feeling is mutual.
And email that reeks of hypocrisy is nothing short of insulting.
I know she's been trying to see if she can come "visit" sooner, however, I am done. In my fantasy, I am not here because I am certain that I'll have determined that I have other stuff to do in a different state that must be done the week she comes because the thought of having to deal with her in my home around my children makes me ill. The drag is that logisitically that is not possible without fucking up Mike because he'll be in the middle of his annual massive overtime gig, which means I'll be single parenting 16 hours a day, and even if he isn't, it'll be sticking him in the role of singleparenting which is not bad, but is hard and stressful on him. However, the thought of entertaining my mother-in-law, while being under her constant scrutiny with the security that she'll make commentary about how with her kids she did everything differently and the constant inference being what a rotten mother I am is truly an anti-thrill -- under the category of chewing glass, undergoing a root canal, and giving birth, simultaneously. The thought of doing that without Mike's support is unthinkable.
Yeah, come to my house, put my parenting under a microscope and tell me how you'd do things differently. Yup, we all saw how your parenting worked out. I guess one drug addict out of 4 isn't a bad average. Yeesh!
Mike is already writing the email that delineates what dates in the next several months will work and what dates won't work around his schedule. Of course, if he mentions that I'm considering leaving the state, he's getting a purple nurple.
I just don't want to deal with her shit. What cool about this time, is that my husband will stand up for me and we can always send her out of the house. He's also making it clear that she'll be staying in a hotel and has even offered to pay for it -- I told Mike,"Just say you'd be happy to pay for a hotel." Mike said,"I'd be 'happy' to pay for it?" I asked,"Okay, do you want your mom to stay here?" He basically did the "hell-no!" headshake and hurriedly typed how happy he would be to pay for her room.
I love my husband. I'm glad he loves me.
Saturday, March 20, 2004
So, I know the oven repair guy is coming today and we got told yesterday to expect him late because despite the fact that we had a "morning" appointment, we were number eight on a list of 18. So I'm thinking about dinner time, you know?
He called at 11 and said within about 45 minutes.
I've been a raving lunatic because I expected I had all leisurely danged day to clean the house, so he didn't report us to the health department and well, we don't.
Mike showered and then finished the mopping. I had Russell vacuum twice (poor kid!) and kept sending Genny outside to play so she wouldn't muck anything up.
Oh, and I'm sitting here half dressed (try not to imagine -- you'll make yourself ill) typing this, wondering if the noises I'm hearing in the kitchen are the guy or Mike finishing the floors.
(PLEASEOHPLEASELETITBEMIKE)
And dude -- I'm finding fleece for $2-4 a yard on sale at various places and making quick blankets for Genny's preschool. I've got to get to the other ones, but I think I'm going to end up waiting til May, as I'm up to my butt in papers this month and work and stuff like that.
Must. Flee. This. Place.
He called at 11 and said within about 45 minutes.
I've been a raving lunatic because I expected I had all leisurely danged day to clean the house, so he didn't report us to the health department and well, we don't.
Mike showered and then finished the mopping. I had Russell vacuum twice (poor kid!) and kept sending Genny outside to play so she wouldn't muck anything up.
Oh, and I'm sitting here half dressed (try not to imagine -- you'll make yourself ill) typing this, wondering if the noises I'm hearing in the kitchen are the guy or Mike finishing the floors.
(PLEASEOHPLEASELETITBEMIKE)
And dude -- I'm finding fleece for $2-4 a yard on sale at various places and making quick blankets for Genny's preschool. I've got to get to the other ones, but I think I'm going to end up waiting til May, as I'm up to my butt in papers this month and work and stuff like that.
Must. Flee. This. Place.
Friday, March 19, 2004
The Friday Five
If you ....
1. ...owned a restaurant, what kind of food would you serve?
I would probably serve homestyle meals for families. I would also probably have a pretty extensive selection of vegetarian selections because I'm a really good vegetarian cook. Though my family will eat such things, my husband would rather have his meat and potatoes. The only exception he makes to that is my vegetarian lasagna which is famous with friends in several states. I haven't had the time to do tofu balls, but I think I could win him on that, too.
I make really good meals. I have a good sense of smell, so I know rather intuitively the kinds of things to make each meal amazing. I swear I am not bragging. I have friends who come to my house to eat on a regular basis and rave on and on about the food.
My desserts, on the other hand, are pretty limited. I make a really yummy chocolate chip cookie and delish brownies. Beyond that I am the undisputed queen of the lemon cake and any kind of fresh fruit betty, torte, or pie. I think for desserts I would have my friend Mel and her sister come bake for me and we'd run the place together. Those two are amazing dessert chefs. *drool*
I would also, due to my deep and abiding love of the chile pepper have to have an extensive salsa bar.
2. ...owned a small store, what kind of merchandise would you sell?
I would run a thrift shop that helped the poor in my community. I would see people's throw away stuff and I'd probably even go so far as to sell stuff that would help someone refinish furniture pieces and I would specialize in retaining kids' clothes for all sizes. I might even run furniture refinishing classes to help folks do a good job of it.
3. ...wrote a book, what genre would it be?
I still want to write a book on the families of children with disabilities.
4. ...ran a school, what would you teach?
I would teach hands on science, and would find ways of including everything else in the same gasp. By teaching science that kids can touch, you can include literacy, math, and a lot of other stuff. You could teach chemical reactions by having kids bake! You could show the life cycle by having them grow a garden and figure out ways to keep the bunnies out.
5. ...recorded an album, what kind of music would be on it?
Irish folk music.
If you ....
1. ...owned a restaurant, what kind of food would you serve?
I would probably serve homestyle meals for families. I would also probably have a pretty extensive selection of vegetarian selections because I'm a really good vegetarian cook. Though my family will eat such things, my husband would rather have his meat and potatoes. The only exception he makes to that is my vegetarian lasagna which is famous with friends in several states. I haven't had the time to do tofu balls, but I think I could win him on that, too.
I make really good meals. I have a good sense of smell, so I know rather intuitively the kinds of things to make each meal amazing. I swear I am not bragging. I have friends who come to my house to eat on a regular basis and rave on and on about the food.
My desserts, on the other hand, are pretty limited. I make a really yummy chocolate chip cookie and delish brownies. Beyond that I am the undisputed queen of the lemon cake and any kind of fresh fruit betty, torte, or pie. I think for desserts I would have my friend Mel and her sister come bake for me and we'd run the place together. Those two are amazing dessert chefs. *drool*
I would also, due to my deep and abiding love of the chile pepper have to have an extensive salsa bar.
2. ...owned a small store, what kind of merchandise would you sell?
I would run a thrift shop that helped the poor in my community. I would see people's throw away stuff and I'd probably even go so far as to sell stuff that would help someone refinish furniture pieces and I would specialize in retaining kids' clothes for all sizes. I might even run furniture refinishing classes to help folks do a good job of it.
3. ...wrote a book, what genre would it be?
I still want to write a book on the families of children with disabilities.
4. ...ran a school, what would you teach?
I would teach hands on science, and would find ways of including everything else in the same gasp. By teaching science that kids can touch, you can include literacy, math, and a lot of other stuff. You could teach chemical reactions by having kids bake! You could show the life cycle by having them grow a garden and figure out ways to keep the bunnies out.
5. ...recorded an album, what kind of music would be on it?
Irish folk music.
Thursday, March 18, 2004
Russell had his MRI yesterday. I stayed in the room with him, holding onto his leg while he tried to remain very very still. They'd given him a sedative, so the techs were able to get really clear and perfect shots of him. I was really surprised at just how still he could be.
The magnet stuff creeped me out entirely. I wanted to flee the room because I could feel it all around me and it was a force of will to remain in the room. It was pretty icky.
However, I think something's going on with Bear's meds. Yesterday and today, he's had a lot of tics. I think we may have to reduce how much medication he takes, but I'm waiting on the neurologist to do so. I was concerned last night because he was really bad after the sedative and S. was here and we were both freaking out about him. About the time I had finally decided I might have to take him to the emergency room, he got a lot more normal. He was still absent-minded as hell, but at least not moving his head from side to side, blinking, and wiggling his arms all over the place, while he was ostensibly trying to just leave them by his side.
God, this stuff is scarier than hell.
I made Genny the dress. I ended up in 1230AM forgoing the whole pinafore over the top of shamrock fabric and just making a sash. I'll make the pinafore for the easter outfit. I was lazy and just put a hem of lace on because I didn't want to slip stitch anything at 1AM, oddly enough. Apparently, her daycare folks made a big stink and she was still twirling around the house when she came home. Next year, I'm just buying her the shirt.
I made the meatballs right. Two times running Mike has made them and they've been icky. The first time, he used ground turkey and there's something way revolting about turkey and spaghetti sauce. The second time, they just weren't right. I don't know what he did, but they were just off.
Tonight, I made them. They smell right and delicious and everything right.
The magnet stuff creeped me out entirely. I wanted to flee the room because I could feel it all around me and it was a force of will to remain in the room. It was pretty icky.
However, I think something's going on with Bear's meds. Yesterday and today, he's had a lot of tics. I think we may have to reduce how much medication he takes, but I'm waiting on the neurologist to do so. I was concerned last night because he was really bad after the sedative and S. was here and we were both freaking out about him. About the time I had finally decided I might have to take him to the emergency room, he got a lot more normal. He was still absent-minded as hell, but at least not moving his head from side to side, blinking, and wiggling his arms all over the place, while he was ostensibly trying to just leave them by his side.
God, this stuff is scarier than hell.
I made Genny the dress. I ended up in 1230AM forgoing the whole pinafore over the top of shamrock fabric and just making a sash. I'll make the pinafore for the easter outfit. I was lazy and just put a hem of lace on because I didn't want to slip stitch anything at 1AM, oddly enough. Apparently, her daycare folks made a big stink and she was still twirling around the house when she came home. Next year, I'm just buying her the shirt.
I made the meatballs right. Two times running Mike has made them and they've been icky. The first time, he used ground turkey and there's something way revolting about turkey and spaghetti sauce. The second time, they just weren't right. I don't know what he did, but they were just off.
Tonight, I made them. They smell right and delicious and everything right.
Tuesday, March 16, 2004
Well, you gotta watch for those toxic chemicals these days, I tell ya.
I'm writing my paper about my pretend child -- she's a 17 year old mentally retarded girl who is non-verbal, violent, and so far has not figured the social graces necessary to work well with others. The thing is -- I think if I had had a retarded child first, I wouldn't have the other two. I think that Russell takes a lot of work and effort and he's a smart capable kid in a lot of ways. I cannot imagine having to cope with a child with severe mental retardation and have to consider the possibility of a long-term care facility for my child.
In fact, I think it takes pure guts to have a second child after having a retarded child. I know I wouldn't have done it. And it's not that I'm being selfish, I just know that I wouldn't have a whole lot left over after dealing with a retarded child when I was a single mom. I barely had much left over after dealing with my constantly sick Bear boy as it was and is and I often feel guilty for the bare minimum attention Genny gets after I've done all the crap I have to do for Russell. I often find myself making up for it somehow.
My latest guilt trip involves making her a green dress for St. Patrick's Day. I'm making the middle dress with a green gingham under dress and a shamrock pinafore. The pinafore will be switched out to a matching butterfly and flowers in blue for Easter. Two bangs for my buck, baby!
The bunnies are frisky, the quail are nesting as cute as can be in little holes under branches of sage brush, and the new rooster has his phermone thing going on. This is of course the same rooster that attacked my ass on Saturday. I bent over and was collecting eggs and suddenly felt something weird and painful on my butt. Thinking it was my husband trying to playfully smack me with the rake or something I whirled to see this F**KING rooster start to fluff up his feathers and go to make another pass at me. I got the rake and chased his stupid fowl ass out of the hen house. I came out and looked at my husband and in utter disbelief uttered the phrase,"That stupid cock attacked my ass."
My husband, stupid man that he is, could not contain his smirk. He said,"I know how he feels." I glared at him and dusted off my butt and stomped inside, swearing to wreak all kinds of fowl havoc upon the rooster and inflict celibacy infinitum upon the husband.
Instead, I just made Mike collect the eggs because the rooster doesn't attack his ass and I attacked Mike, which worked well for all involved.
I'm writing my paper about my pretend child -- she's a 17 year old mentally retarded girl who is non-verbal, violent, and so far has not figured the social graces necessary to work well with others. The thing is -- I think if I had had a retarded child first, I wouldn't have the other two. I think that Russell takes a lot of work and effort and he's a smart capable kid in a lot of ways. I cannot imagine having to cope with a child with severe mental retardation and have to consider the possibility of a long-term care facility for my child.
In fact, I think it takes pure guts to have a second child after having a retarded child. I know I wouldn't have done it. And it's not that I'm being selfish, I just know that I wouldn't have a whole lot left over after dealing with a retarded child when I was a single mom. I barely had much left over after dealing with my constantly sick Bear boy as it was and is and I often feel guilty for the bare minimum attention Genny gets after I've done all the crap I have to do for Russell. I often find myself making up for it somehow.
My latest guilt trip involves making her a green dress for St. Patrick's Day. I'm making the middle dress with a green gingham under dress and a shamrock pinafore. The pinafore will be switched out to a matching butterfly and flowers in blue for Easter. Two bangs for my buck, baby!
The bunnies are frisky, the quail are nesting as cute as can be in little holes under branches of sage brush, and the new rooster has his phermone thing going on. This is of course the same rooster that attacked my ass on Saturday. I bent over and was collecting eggs and suddenly felt something weird and painful on my butt. Thinking it was my husband trying to playfully smack me with the rake or something I whirled to see this F**KING rooster start to fluff up his feathers and go to make another pass at me. I got the rake and chased his stupid fowl ass out of the hen house. I came out and looked at my husband and in utter disbelief uttered the phrase,"That stupid cock attacked my ass."
My husband, stupid man that he is, could not contain his smirk. He said,"I know how he feels." I glared at him and dusted off my butt and stomped inside, swearing to wreak all kinds of fowl havoc upon the rooster and inflict celibacy infinitum upon the husband.
Instead, I just made Mike collect the eggs because the rooster doesn't attack his ass and I attacked Mike, which worked well for all involved.
Friday, March 12, 2004
It must be spring.
I had this odd thought -- wow, there's grass in my flower bed and I don't want it there. Then I bent over and pulled some of it out. Then, I thought,"hey, I should go get a damned shovel and dig the big rooted in alfalfa out" -- hay seeded I'm sure, but then I had this other idea...I should buy bags of steer manure, turn the soil and buy seeds of pretty flowers to put in all the bare treated soil. Way sick. Way wrong. I've got papers to write, manuals to edit, and tons of calls to make. But the smell of freshly turned soil turns me into the addict I am -- a gardening fool.
Spring always does these weird things to me. Because then I was looking out back at the apple tree, the pear tree, and the two peach trees and I was thinking how I need to get fruit tree fertilizer and the pruners and get cracking. Then I had chainsaw dreams for the ugly locust trees in the front yard, one of which when fully leaved partially blocks my awesome view of valley below and the Sierras. Then I was looking at my front yard and thinking about what a blank slate it is. I imagined the tiered raised beds with a little lavendar and sedum, with poppies and echinacea popping out all over. Then I think I had one.
I had a xeriscape orgasm.
Damn, I need a life.
I had this odd thought -- wow, there's grass in my flower bed and I don't want it there. Then I bent over and pulled some of it out. Then, I thought,"hey, I should go get a damned shovel and dig the big rooted in alfalfa out" -- hay seeded I'm sure, but then I had this other idea...I should buy bags of steer manure, turn the soil and buy seeds of pretty flowers to put in all the bare treated soil. Way sick. Way wrong. I've got papers to write, manuals to edit, and tons of calls to make. But the smell of freshly turned soil turns me into the addict I am -- a gardening fool.
Spring always does these weird things to me. Because then I was looking out back at the apple tree, the pear tree, and the two peach trees and I was thinking how I need to get fruit tree fertilizer and the pruners and get cracking. Then I had chainsaw dreams for the ugly locust trees in the front yard, one of which when fully leaved partially blocks my awesome view of valley below and the Sierras. Then I was looking at my front yard and thinking about what a blank slate it is. I imagined the tiered raised beds with a little lavendar and sedum, with poppies and echinacea popping out all over. Then I think I had one.
I had a xeriscape orgasm.
Damn, I need a life.
Wednesday, March 10, 2004
I had a mid-term today and well, you know me. I studied my fool head off, but most particularly, I found a website of the publisher of the book that had a bunch of multiple choice, short-answer, and true-false questions for each chapter. Apparently, the professor found the same site because 75% of the questions on the test were from that website -- word for word.
Score!
And I hadn't read all the text.
BAD graduate student! BADDDDD!
Hee! Nonetheless, my 4-7 class was done by 450! You still needed to scrape the char off me and call me toast, however. I'm still doing that insane insomnia thing. Ambien, schmambien.
If I were someone else watching me, I'd say I needed to get laid. And I'd be right. Too much stress is bad. Too much sex is rarely bad, not to mention badly rare.
Where did I leave that hubbins?
Score!
And I hadn't read all the text.
BAD graduate student! BADDDDD!
Hee! Nonetheless, my 4-7 class was done by 450! You still needed to scrape the char off me and call me toast, however. I'm still doing that insane insomnia thing. Ambien, schmambien.
If I were someone else watching me, I'd say I needed to get laid. And I'd be right. Too much stress is bad. Too much sex is rarely bad, not to mention badly rare.
Where did I leave that hubbins?
Tuesday, March 09, 2004
Just call me the undisputed queen of the very long day.
I did an observation today of a child who has all the earmarks of a very ADHD child at my babygirl's old daycare. It made me sad. He absolutely was not able to stop fidgeting. All the other kids were attentive during reading time, but he was alternately playing with his tongue and then his fingers & tongue so much that he ended up drooling on himself and having to wipe his chin. Which while damned funny, also represents a problem in terms of how school will work out for him later.
During schoolwork time, he absolutely could not stay on task for any reason. While he did a much better job of coloring than the other kid, the other kid was done with all his schoolwork and playing in about 20 minutes. This kid was still at it after 45.
He seemed behaviorally okay, other than the obvious attention issues, while I was there. However, the caregiver informed me that he got into a knockdown drag out brawl with another kid after I left, which is precisely the reason I wanted to observe him, but I will just keep visiting and then come up with a plan with his caregiver. So far, whenever I've been there, he's been good as gold, so maybe we need to get past the "Hey, cool new person spending time here" phase and get right down to the "I'm comfortable with you around, so I'm going to knock the socks off another kid" phase.
I think he is a kid that would really benefit from a positive reward system. I've got to get my damned book from Am@zon, though, to start to discuss it with his caregiver.
His parents are very touchy about the whole thing
I did an observation today of a child who has all the earmarks of a very ADHD child at my babygirl's old daycare. It made me sad. He absolutely was not able to stop fidgeting. All the other kids were attentive during reading time, but he was alternately playing with his tongue and then his fingers & tongue so much that he ended up drooling on himself and having to wipe his chin. Which while damned funny, also represents a problem in terms of how school will work out for him later.
During schoolwork time, he absolutely could not stay on task for any reason. While he did a much better job of coloring than the other kid, the other kid was done with all his schoolwork and playing in about 20 minutes. This kid was still at it after 45.
He seemed behaviorally okay, other than the obvious attention issues, while I was there. However, the caregiver informed me that he got into a knockdown drag out brawl with another kid after I left, which is precisely the reason I wanted to observe him, but I will just keep visiting and then come up with a plan with his caregiver. So far, whenever I've been there, he's been good as gold, so maybe we need to get past the "Hey, cool new person spending time here" phase and get right down to the "I'm comfortable with you around, so I'm going to knock the socks off another kid" phase.
I think he is a kid that would really benefit from a positive reward system. I've got to get my damned book from Am@zon, though, to start to discuss it with his caregiver.
His parents are very touchy about the whole thing
Monday, March 08, 2004
Yesterday, was a really good day. I got a lot done and that kept me busy. I cooked a big dinner for the guys, so Russ would sleep well for his sleep study.
And then today arrived, and I just was feeling like a bad mommy again. And no, it doesn't make sense. I'm not a bad mommy and I know that, but sometimes, I just feel like a bad mommy and I just have to ride it out. I am struck by how I am experiencing this as a grieving process. Some days, I cry and some days I don't. Today, was a cry day.
I'm in the process of getting records from the hospital and from the special education preschool. I talked to the legal advocacy people and they're probably going to come to the IEP meeting, so I get the IEP written well. I was surprised as we talked about this stuff on the phone, just how clear I am about exactly what I think needs to happen for him. Then, I began to think about how little I've been listened to and the Bad Mommy feeling came back.
I told my class about it tonight and I thought I would cry, and while I came dangerously close, I took strength when they laughed when I said,"Hey, on the good news front, I will never have to fight for his IEP eligibility again." After the IEP has been put together, I will go to the regional center and will apply for Medicaid and SSI as protectionary measures -- just in case. He may be able to draw SSI into an account that he can access when he is 18, which will supplement the money we are saving for his college fund. I figure, if something happens and he needs that money, then it is all set up for him in advance. I told LaDawn, so she does the same thing for her kid.
The class tonight is the class for the instructor whose parents were in the car wreck. She brought matchbox cars and showed us what happened. I wish she hadn't. I was fighting the tears listening to how her elderly parents got out of the car after the first car sideswiped them. The second car that hit 10 minutes later is the one that hurt her dad, who has been in a coma since that moment. Her mother is a diabetic in a wheelchair, who relied on her husband for her care. Overall, it's very sad. The instructor's going to be going down there all the time, but I asked, "If you mother is dependent on your father for her care, are you going to see about a home healthcare aide while he's in the hospital?" She had already talked about if her father passed that her mother would come live with her, so I wasn't being totally tactless, though afterwards, I wish I'd just shut up about it. But I love this woman like she's family, so I'm worried. She's iconic in the amount of respect she has and she doesn't even have the title of professor to bandy about, as she's in the doctoral program, but people know her better than the chair. I just wish I could do more to be helpful.
On my own health front, my diabetes is not hideous, but it's not great either. I'm not testing sugars much at all, and I should be. I'm not exercising and I should be. I am losing weight because generally, I'm just not eating what I should be. I need to be doing all of my shoulds, however, because swollen ankles are pretty common for me and that's a bad thing. It's beautiful spring weather, so tomorrow after lunch, I'm going to walk. I figure something every so often is better than nothing ever and with the weather being so lovely, I need to do my part to increase my spring freckle population. Tomorrow, I promised Russell I'd get up with him and cook him breakfast, so we could hang together a little while. So I'll cook myself a little something, too.
One. Day. At. A. Time.
And then today arrived, and I just was feeling like a bad mommy again. And no, it doesn't make sense. I'm not a bad mommy and I know that, but sometimes, I just feel like a bad mommy and I just have to ride it out. I am struck by how I am experiencing this as a grieving process. Some days, I cry and some days I don't. Today, was a cry day.
I'm in the process of getting records from the hospital and from the special education preschool. I talked to the legal advocacy people and they're probably going to come to the IEP meeting, so I get the IEP written well. I was surprised as we talked about this stuff on the phone, just how clear I am about exactly what I think needs to happen for him. Then, I began to think about how little I've been listened to and the Bad Mommy feeling came back.
I told my class about it tonight and I thought I would cry, and while I came dangerously close, I took strength when they laughed when I said,"Hey, on the good news front, I will never have to fight for his IEP eligibility again." After the IEP has been put together, I will go to the regional center and will apply for Medicaid and SSI as protectionary measures -- just in case. He may be able to draw SSI into an account that he can access when he is 18, which will supplement the money we are saving for his college fund. I figure, if something happens and he needs that money, then it is all set up for him in advance. I told LaDawn, so she does the same thing for her kid.
The class tonight is the class for the instructor whose parents were in the car wreck. She brought matchbox cars and showed us what happened. I wish she hadn't. I was fighting the tears listening to how her elderly parents got out of the car after the first car sideswiped them. The second car that hit 10 minutes later is the one that hurt her dad, who has been in a coma since that moment. Her mother is a diabetic in a wheelchair, who relied on her husband for her care. Overall, it's very sad. The instructor's going to be going down there all the time, but I asked, "If you mother is dependent on your father for her care, are you going to see about a home healthcare aide while he's in the hospital?" She had already talked about if her father passed that her mother would come live with her, so I wasn't being totally tactless, though afterwards, I wish I'd just shut up about it. But I love this woman like she's family, so I'm worried. She's iconic in the amount of respect she has and she doesn't even have the title of professor to bandy about, as she's in the doctoral program, but people know her better than the chair. I just wish I could do more to be helpful.
On my own health front, my diabetes is not hideous, but it's not great either. I'm not testing sugars much at all, and I should be. I'm not exercising and I should be. I am losing weight because generally, I'm just not eating what I should be. I need to be doing all of my shoulds, however, because swollen ankles are pretty common for me and that's a bad thing. It's beautiful spring weather, so tomorrow after lunch, I'm going to walk. I figure something every so often is better than nothing ever and with the weather being so lovely, I need to do my part to increase my spring freckle population. Tomorrow, I promised Russell I'd get up with him and cook him breakfast, so we could hang together a little while. So I'll cook myself a little something, too.
One. Day. At. A. Time.
Friday, March 05, 2004
Friday Five
What was...
1. ...your first grade teacher's name?
Mrs. Fuller -- an honest to God battleaxe. She used to smack Georgy Porgy Puddin' and Pie's finger and Skipper McGoldrick, too. But if you'd known, Skipper, you'd have smacked him just for fun.
2. ...your favorite Saturday morning cartoon?
Gumby. Just shut up. I like Gumby. He was the bomb.
3. ...the name of your very first best friend?
Bill -- my brother. In elementary school, with 50% of the population suffering from some level of emotional or behavioral disorder, I didn't have many friends. I had four different schools from grade 6-9, so really I didn't have a best friend until high school and her name was An Ho. We invented our own language so we could talk about people without them knowing what we were saying. The only remaining word from that now lost language is "egnarts." Strange spelled backwards. Mentioning this word within a 10 block radius of either myself or An will result in an eruption of school girl laughter, I am under no obligation to explain.
4. ...your favorite breakfast cereal?
Grapenuts, loaded with sugar and milk and allowed to sit til slightly soft.
5. ...your favorite thing to do after school?
I am a book worm. What do you think? I read. When I finished reading, I read some more. I also climbed trees, hiked in the woods, skated, and cross-country skiied.
Still working on the Bear stuff. Didn't sleep much last night.
What'd the neurologist do to figure out cerebral palsy?
In order to reach his determination, the neurologist had him do some things. He had him close his eyes, put out his tongue and hold his arms in front of him with his fingers splayed. Most of us do that and our fingers stay relatively still. Russell's fingers were wiggling -- Pachtels/Bechtels I think they're called. He also said that his heel cords are really tight, something the PT said also, and asked if he walks on his toes, which he does. When he asked him to let his arms or legs go, there was a lot of tension in them and the doctor had a name for that also. His super thin body and lack of musculature and strength was another concern. Also, I think his history -- he had/has a hard time eating, he has always fallen a lot, he's always been uncoordinated, he has tremendous difficulty with fine motor tasks (I still help him button his dress shirts), and his odd gait were all also factors in this.
The PT wrote that she's worried about him in junior high because he's really easy to topple and all that jostling from class to class might make it easy to drop him. I worry about that one step further -- kids aren't nice and they might intentionally drop him.
I've been bawling all night. I should be counting my blessings -- he's not in a wheel chair, he doesn't have MR from this -- all in all it's pretty mild. I can't help reviewing every aspect of my pregnancy, his birth, etc., and wondering what I did to make this happen. That probably makes no sense at all, but it's where I am. I had some tactless boob send me the following:
I looked on the UCP website, and it said that perhaps 70% of CP cases aren't due to birth trauma, but start even before that...so it may not necessarily have anything to do with what happened at the hospital.
I emailed a friend through tears the following response:
This really sent me over the edge. Rational or not, in my hidden heart, it's all my fault, whether it is or not. I was trying to comfort myself with the fact that it was a really rough delivery and maybe trying too hard to put a brave face to how I was feeling because this hurts so deeply and profoundly. Every time I look at him, I want to throw myself at his feet and ask him to forgive me.
I've spent hours bawling over this. 70%? It really was my fault and I can never take back whatever stupid thing I did when I was pregnant that hurt him. I keep thinking maybe it was the bronchitis or some other thing I did that I just can't remember. I wanted to hope it was that nurse on top of me in surgery. I keep thinking about how I should have known to push his pediatrician or to just know that he wasn't like the other kids and it wasn't just ear infections. I had no basis of comparison or just didn't see it when I did.
I am so stupid and inept and he deserves so much more than this.
My bear did get a good night's sleep last night. His eye shadows weren't so deep this morning -- it's been a long time since I've seen that much light skin under his eyes. He has the sleep study on Sunday, so we'll probably go swimming to wear the kids out, so he sleeps well at the clinic.
They will call to schedule the MRI and the EEG is a week from Monday. I think those are more for his ADHD and to rule out other possibilities. It may also be possible to determine what part of his brain is affected.
What was...
1. ...your first grade teacher's name?
Mrs. Fuller -- an honest to God battleaxe. She used to smack Georgy Porgy Puddin' and Pie's finger and Skipper McGoldrick, too. But if you'd known, Skipper, you'd have smacked him just for fun.
2. ...your favorite Saturday morning cartoon?
Gumby. Just shut up. I like Gumby. He was the bomb.
3. ...the name of your very first best friend?
Bill -- my brother. In elementary school, with 50% of the population suffering from some level of emotional or behavioral disorder, I didn't have many friends. I had four different schools from grade 6-9, so really I didn't have a best friend until high school and her name was An Ho. We invented our own language so we could talk about people without them knowing what we were saying. The only remaining word from that now lost language is "egnarts." Strange spelled backwards. Mentioning this word within a 10 block radius of either myself or An will result in an eruption of school girl laughter, I am under no obligation to explain.
4. ...your favorite breakfast cereal?
Grapenuts, loaded with sugar and milk and allowed to sit til slightly soft.
5. ...your favorite thing to do after school?
I am a book worm. What do you think? I read. When I finished reading, I read some more. I also climbed trees, hiked in the woods, skated, and cross-country skiied.
Still working on the Bear stuff. Didn't sleep much last night.
What'd the neurologist do to figure out cerebral palsy?
In order to reach his determination, the neurologist had him do some things. He had him close his eyes, put out his tongue and hold his arms in front of him with his fingers splayed. Most of us do that and our fingers stay relatively still. Russell's fingers were wiggling -- Pachtels/Bechtels I think they're called. He also said that his heel cords are really tight, something the PT said also, and asked if he walks on his toes, which he does. When he asked him to let his arms or legs go, there was a lot of tension in them and the doctor had a name for that also. His super thin body and lack of musculature and strength was another concern. Also, I think his history -- he had/has a hard time eating, he has always fallen a lot, he's always been uncoordinated, he has tremendous difficulty with fine motor tasks (I still help him button his dress shirts), and his odd gait were all also factors in this.
The PT wrote that she's worried about him in junior high because he's really easy to topple and all that jostling from class to class might make it easy to drop him. I worry about that one step further -- kids aren't nice and they might intentionally drop him.
I've been bawling all night. I should be counting my blessings -- he's not in a wheel chair, he doesn't have MR from this -- all in all it's pretty mild. I can't help reviewing every aspect of my pregnancy, his birth, etc., and wondering what I did to make this happen. That probably makes no sense at all, but it's where I am. I had some tactless boob send me the following:
I looked on the UCP website, and it said that perhaps 70% of CP cases aren't due to birth trauma, but start even before that...so it may not necessarily have anything to do with what happened at the hospital.
I emailed a friend through tears the following response:
This really sent me over the edge. Rational or not, in my hidden heart, it's all my fault, whether it is or not. I was trying to comfort myself with the fact that it was a really rough delivery and maybe trying too hard to put a brave face to how I was feeling because this hurts so deeply and profoundly. Every time I look at him, I want to throw myself at his feet and ask him to forgive me.
I've spent hours bawling over this. 70%? It really was my fault and I can never take back whatever stupid thing I did when I was pregnant that hurt him. I keep thinking maybe it was the bronchitis or some other thing I did that I just can't remember. I wanted to hope it was that nurse on top of me in surgery. I keep thinking about how I should have known to push his pediatrician or to just know that he wasn't like the other kids and it wasn't just ear infections. I had no basis of comparison or just didn't see it when I did.
I am so stupid and inept and he deserves so much more than this.
My bear did get a good night's sleep last night. His eye shadows weren't so deep this morning -- it's been a long time since I've seen that much light skin under his eyes. He has the sleep study on Sunday, so we'll probably go swimming to wear the kids out, so he sleeps well at the clinic.
They will call to schedule the MRI and the EEG is a week from Monday. I think those are more for his ADHD and to rule out other possibilities. It may also be possible to determine what part of his brain is affected.
Thursday, March 04, 2004
Russell had his first neurology appointment today. I hadn't seriously considered cerebral palsy until Tuesday night when the physical therapist from the school called and said that she thought he might have a mild form of cerebral palsy. The neurologist confirmed that Russell has mild cerebral palsy. I called my friend, Robin, who attended his birth and as we talked about things, I am positive it was a birth trauma and that the hospital may have done things to cover it up. I am remembering more about the birth and I remember seeing the nurse/midwife get on the table and she was pushing on him so hard that I could feel it through the spinal block. She had to have been pushing on his shoulders and head because he was wedged up into my organs and he was breech. Then he spent 1-2 hours on a warming tray because he was blue. I don't know if I can realistically pursue anything after so much time has passed. I am not even sure that the RN in the birthing room with me (as my birthing parnter) is still alive to confirm this, but remembering it, is comforting, as I needed to know that I didn't do something that might have done this to him for my own peace of mind.
All that matters now is that I don't have to fight with the schools any more. He qualifies for special education automatically with CP, as it is considered brain trauma. We can get him physical therapy and help him. I am also sure I can request a lot more OT than he's currently getting.
Additionally, we are getting a sleep study done because there is a strong correlation between ADHD severity and sleep deprivation, which we definitely think is a contributing factor in Russell's case -- he wakes up a lot, has a hard time dropping off, he snores, and he's a mouth breather with a BIG overbite. We are also getting an MRI and and EEG done. At the end of the month, my hope is that he will be on less medication and getting more sleep.
Ultimately, the cerebral palsy diagnosis changes little other than I won't have to fight with the school to make him eligible for services any more. I let the school know already that we will be changing his eligibility to brain trauma. The special ed teacher smiled when I told him that I'll never have problems with eligibility again. Now, it's just a matter of negotiating necessary services for him. What the school can't and won't provide, we will do through insurance. I think because of his disability, I may be able to qualify him for help from the government, too, so that we don't have to tax our insurance overly.
I'm very sad and angry about the time that has elapsed. I'm angry about the pediatrician who blew me off when I asked about CP when Russell was 2.5. I am sad about the lost time, which could have made a huge difference in his life because with a lot of physical therapy, he could be a different boy physically. However, it does make a lot of things in the past clearer.
As always, however, I love him fiercely. Both Mike and I were sure after doing a lot of online reading yesterday, that he has cerebral palsy, so the doctor's diagnosis wasn't a complete shock, though I was trying hard not to cry in front of Russell. I just didn't want him to think something was wrong -- I'm just relieved.
I'm going to go have a good cry, I think. And a nap.
All that matters now is that I don't have to fight with the schools any more. He qualifies for special education automatically with CP, as it is considered brain trauma. We can get him physical therapy and help him. I am also sure I can request a lot more OT than he's currently getting.
Additionally, we are getting a sleep study done because there is a strong correlation between ADHD severity and sleep deprivation, which we definitely think is a contributing factor in Russell's case -- he wakes up a lot, has a hard time dropping off, he snores, and he's a mouth breather with a BIG overbite. We are also getting an MRI and and EEG done. At the end of the month, my hope is that he will be on less medication and getting more sleep.
Ultimately, the cerebral palsy diagnosis changes little other than I won't have to fight with the school to make him eligible for services any more. I let the school know already that we will be changing his eligibility to brain trauma. The special ed teacher smiled when I told him that I'll never have problems with eligibility again. Now, it's just a matter of negotiating necessary services for him. What the school can't and won't provide, we will do through insurance. I think because of his disability, I may be able to qualify him for help from the government, too, so that we don't have to tax our insurance overly.
I'm very sad and angry about the time that has elapsed. I'm angry about the pediatrician who blew me off when I asked about CP when Russell was 2.5. I am sad about the lost time, which could have made a huge difference in his life because with a lot of physical therapy, he could be a different boy physically. However, it does make a lot of things in the past clearer.
As always, however, I love him fiercely. Both Mike and I were sure after doing a lot of online reading yesterday, that he has cerebral palsy, so the doctor's diagnosis wasn't a complete shock, though I was trying hard not to cry in front of Russell. I just didn't want him to think something was wrong -- I'm just relieved.
I'm going to go have a good cry, I think. And a nap.
Wednesday, March 03, 2004
Russell has always had an odd gait, trouble with fine motor control, speech problems, and coordination issues. He's also always had low muscle tone.
When he was 2.5, his special education preschool program suggested he might have Cerebral Palsy. I took him to the pediatrician; the pediatrician dismissed this. Of course, a few years later, when the school suggested that he might have ADHD, the pediatrician dismissed that, too. Because I was on an HMO, and I needed the pediatrician's referral, I couldn't just go to a neurologist, I had to have his referral. Because his office was the most reputable pediatrician's office around, I couldn't just change to another doctor in the practice because there was a good chance they'd turn me down. Not to mention, that because I was always out of sick and vacation time caring for a constantly ill child, I didn't have that much time to pursue this and I was usually just trying to contend with the latest ear infection or illness, while holding a full-time job and single momming.
When the psychiatrist suggested we should take him to a neurologist because of his gait and some tics, she had mentioned Tourette's Syndrome and Cerebral Palsy. Then several other people mentioned things about his gait.
Last night, a physical therapist from Russell's school had conducted an evaluation. When asked her opinion, she said that she thought he has mild cerebral palsy. She also said that her testing put him at about a 5 or 6 year old level of balance/coordination. I was stunned. I guess I shouldn't have been, but I was.
I started looking up everything I could find on cerebral palsy on the net. Mike did, too. At lunch, we quietly compared notes. We both think he has it, too, and always has. He has the things I mentioned above, he also had a hell of time and still does sometimes with eating and often choked or couldn't eat normally.
Tomorrow, he sees the neurologist. It doesn't change how sad and worried we both are about him and the urgency with which we want testing to commence. It doesn't change the years he could have been getting the therapy which would make him nearly normal and the IEP he would have been guaranteed.
But it could change his future, and that's what I am hanging onto tenaciously.
When he was 2.5, his special education preschool program suggested he might have Cerebral Palsy. I took him to the pediatrician; the pediatrician dismissed this. Of course, a few years later, when the school suggested that he might have ADHD, the pediatrician dismissed that, too. Because I was on an HMO, and I needed the pediatrician's referral, I couldn't just go to a neurologist, I had to have his referral. Because his office was the most reputable pediatrician's office around, I couldn't just change to another doctor in the practice because there was a good chance they'd turn me down. Not to mention, that because I was always out of sick and vacation time caring for a constantly ill child, I didn't have that much time to pursue this and I was usually just trying to contend with the latest ear infection or illness, while holding a full-time job and single momming.
When the psychiatrist suggested we should take him to a neurologist because of his gait and some tics, she had mentioned Tourette's Syndrome and Cerebral Palsy. Then several other people mentioned things about his gait.
Last night, a physical therapist from Russell's school had conducted an evaluation. When asked her opinion, she said that she thought he has mild cerebral palsy. She also said that her testing put him at about a 5 or 6 year old level of balance/coordination. I was stunned. I guess I shouldn't have been, but I was.
I started looking up everything I could find on cerebral palsy on the net. Mike did, too. At lunch, we quietly compared notes. We both think he has it, too, and always has. He has the things I mentioned above, he also had a hell of time and still does sometimes with eating and often choked or couldn't eat normally.
Tomorrow, he sees the neurologist. It doesn't change how sad and worried we both are about him and the urgency with which we want testing to commence. It doesn't change the years he could have been getting the therapy which would make him nearly normal and the IEP he would have been guaranteed.
But it could change his future, and that's what I am hanging onto tenaciously.
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