Thursday, June 30, 2005
Done Migrating Old Posts
Time to banish the old blog to the neather regions of the internet. I moved what I thought was important for people to read. I am out for the day. Time to get the kids!
Diagnosis Day
April 12, 2005
Well, we finally got his official diagnosis last Wednesday. My son Jimmy suffers from Pervasive Development Disorder - Not Otherwise Specified, an Autism Spectrum Disorder. According to his doctor, his is mild and high functioning. You would think that it would hurt more than it does. Two things have helped - this has been so long in the offing - the referral was written back last August. The first neurology appointment was in December. I have had months to watch him progress, knowing that as well as he was doing, unless he start spewing out sentences, making eye contact, and becoming the social butterfly of Kindercare, this diagnosis was coming.
I guess the other thing that has kept me from falling apart is just how well he has done. Language is coming, not in fit and spurts like before, but constantly. I think the thing that frustrates me the most is his therapists and teachers see him use more language than I do. Having said that, when he does say something to me, it truly is the most beautiful sound in the world. No one says "elephant" or "cookie" as melodically as my boy.
I spent years in search of true love, running from boyfriend to boyfriend, looking for someone to settle down with, something to make me truly happy. I find it sort of disturbing that my greatest joy and the greatest love (okay, loves) are two tow headed boys, both of whom test my patience, faith in God, and my ability to go without sleep on a daily basis. Even with all the stress of raising kids, one with ASD, they are the one thing in life that if I could do over, I wouldn't change.
Well, we finally got his official diagnosis last Wednesday. My son Jimmy suffers from Pervasive Development Disorder - Not Otherwise Specified, an Autism Spectrum Disorder. According to his doctor, his is mild and high functioning. You would think that it would hurt more than it does. Two things have helped - this has been so long in the offing - the referral was written back last August. The first neurology appointment was in December. I have had months to watch him progress, knowing that as well as he was doing, unless he start spewing out sentences, making eye contact, and becoming the social butterfly of Kindercare, this diagnosis was coming.
I guess the other thing that has kept me from falling apart is just how well he has done. Language is coming, not in fit and spurts like before, but constantly. I think the thing that frustrates me the most is his therapists and teachers see him use more language than I do. Having said that, when he does say something to me, it truly is the most beautiful sound in the world. No one says "elephant" or "cookie" as melodically as my boy.
I spent years in search of true love, running from boyfriend to boyfriend, looking for someone to settle down with, something to make me truly happy. I find it sort of disturbing that my greatest joy and the greatest love (okay, loves) are two tow headed boys, both of whom test my patience, faith in God, and my ability to go without sleep on a daily basis. Even with all the stress of raising kids, one with ASD, they are the one thing in life that if I could do over, I wouldn't change.
Another post from the old blog
March 16, 2005
In Jimmy's backpack, there is a notebook that travels with him to and from school. It's a way for the teachers and I to keep in touch. Granted, the teachers use it more than I do, because I am a yakker and I just keep those poor folks on speed dial with all my angst and worry... On Monday, the teacher started a note that took up half a page. You could tell where she had stopped writing the first time. Then she went back and added something else that he has just done. Then she did it again. It just kept getting longer. Milestones from the note:
1. He acknowledge the presence of another child by calling him by name - Riley. Note: Riley is now at the top of the list for invites to Jimmy's next birthday party. Before this, he occasionally referred to me as "Mama" and call Buster, aka Miss Kitty, "Cat." To be honest, he is better about addressing the cat than me.
2. He picked up about three new words which escape me at the moment. It's somewhat refreshing to say that I'm almost blase about this because of all the new words his picks up.
3. He has mastered drinking from straw. At 3 and a half. I know to most parents that is no big deal, but it opens up a whole new world of juice boxes for us. Once you can master the straw, you don't have to remember the sippy cup.
It's thrilling, but yet I still have these moments where I am really sad. He functions so well on so many levels, but he doesn't have the social skills to make friends or the language to convey what he thinks, how he feels. I want everything to come now and it all happens so slowly. That straw thing represents almost four months of daily effort on the part of his pre-school teachers. She has been working on it since its inclusion on the IEP. Yesterday morning, I answered the phone. A woman was on the other line. "Hi, I'm Jimmy's new therapist. I am not feeling well and can't make it today." You know, since we began therapy on February 22nd, we should have had eight sessions and we have only had three!!! The therapist was overbooked or sick or it snowed. One wound up being an evaluation session rather than therapy, which was an hour of answer questions about Jimmy can and cannot do. It's always a personal hell for me, because I am just so damn apologetic about it. It seriously makes me feel so small, less like he is on the autism spectrum and more like he is on the spectrum because I have failed him in someway. Intellectually, I know that is not the case, but emotionally it kills me every time... But I digress. It's just, I am constantly dealing with the business end of this - managing doctor's appointments, therapy appointments, teachers, daycare. I deal, I deal, I deal and somehow any joy that I should be feeling gets sucked out of the equation. I am just left with the stress and frustration.
I know how fortunate I am to have a high functioning child. I know people who deal with a much more difficult end of the spectrum. Other parents deal with children suffering life threatening illnesses - the doctor who delivered my second child, for example, has a son with cancer. That she helped me through the end of a difficult pregnancy and put my baby in my arms for the very first time, that she does this for so many women, and then has to deal with something so awful in her life pains me - it's then I truly feel like an asshole for complaining one moment about my situation. At the same time, I am stressed, frustrated, and hurting too. I have one baby I bust my ass for to get and give him the help he needs, desperately trying to be a good mother too. I have another who I wonder if he is getting enough and being completely overlooked in all of this. I have a husband that isn't as helpful as I would like him to be, but I don't even know what to ask him to do or how he could help. Maybe I am not coping as well as I should, but why does it have to be this way?
There is so much in my life, so much in the world, that is so hard, I really wonder if God exists. How could he possibly make life this hard on people? It feels pointless to pray or even hope sometimes, because it just feels so random. Like there is no plan to any of it. You are lucky or you aren't. Your kids are perfect or they are flawed. Either way, you have to deal with it. God? Sorry, you get no help from him.
In Jimmy's backpack, there is a notebook that travels with him to and from school. It's a way for the teachers and I to keep in touch. Granted, the teachers use it more than I do, because I am a yakker and I just keep those poor folks on speed dial with all my angst and worry... On Monday, the teacher started a note that took up half a page. You could tell where she had stopped writing the first time. Then she went back and added something else that he has just done. Then she did it again. It just kept getting longer. Milestones from the note:
1. He acknowledge the presence of another child by calling him by name - Riley. Note: Riley is now at the top of the list for invites to Jimmy's next birthday party. Before this, he occasionally referred to me as "Mama" and call Buster, aka Miss Kitty, "Cat." To be honest, he is better about addressing the cat than me.
2. He picked up about three new words which escape me at the moment. It's somewhat refreshing to say that I'm almost blase about this because of all the new words his picks up.
3. He has mastered drinking from straw. At 3 and a half. I know to most parents that is no big deal, but it opens up a whole new world of juice boxes for us. Once you can master the straw, you don't have to remember the sippy cup.
It's thrilling, but yet I still have these moments where I am really sad. He functions so well on so many levels, but he doesn't have the social skills to make friends or the language to convey what he thinks, how he feels. I want everything to come now and it all happens so slowly. That straw thing represents almost four months of daily effort on the part of his pre-school teachers. She has been working on it since its inclusion on the IEP. Yesterday morning, I answered the phone. A woman was on the other line. "Hi, I'm Jimmy's new therapist. I am not feeling well and can't make it today." You know, since we began therapy on February 22nd, we should have had eight sessions and we have only had three!!! The therapist was overbooked or sick or it snowed. One wound up being an evaluation session rather than therapy, which was an hour of answer questions about Jimmy can and cannot do. It's always a personal hell for me, because I am just so damn apologetic about it. It seriously makes me feel so small, less like he is on the autism spectrum and more like he is on the spectrum because I have failed him in someway. Intellectually, I know that is not the case, but emotionally it kills me every time... But I digress. It's just, I am constantly dealing with the business end of this - managing doctor's appointments, therapy appointments, teachers, daycare. I deal, I deal, I deal and somehow any joy that I should be feeling gets sucked out of the equation. I am just left with the stress and frustration.
I know how fortunate I am to have a high functioning child. I know people who deal with a much more difficult end of the spectrum. Other parents deal with children suffering life threatening illnesses - the doctor who delivered my second child, for example, has a son with cancer. That she helped me through the end of a difficult pregnancy and put my baby in my arms for the very first time, that she does this for so many women, and then has to deal with something so awful in her life pains me - it's then I truly feel like an asshole for complaining one moment about my situation. At the same time, I am stressed, frustrated, and hurting too. I have one baby I bust my ass for to get and give him the help he needs, desperately trying to be a good mother too. I have another who I wonder if he is getting enough and being completely overlooked in all of this. I have a husband that isn't as helpful as I would like him to be, but I don't even know what to ask him to do or how he could help. Maybe I am not coping as well as I should, but why does it have to be this way?
There is so much in my life, so much in the world, that is so hard, I really wonder if God exists. How could he possibly make life this hard on people? It feels pointless to pray or even hope sometimes, because it just feels so random. Like there is no plan to any of it. You are lucky or you aren't. Your kids are perfect or they are flawed. Either way, you have to deal with it. God? Sorry, you get no help from him.
Don't Mess with Mama
Jan 10, 2005
I wish - I have all that passive-agressive girlie conditioning. But I am pretty pissed at one of my husband's friends. He doesn't really like kids in general, but moreover, he doesn't like Jimmy. He apparently has plenty of opinions on how we our raising our child without any sort of consideration of his lack of receptive or expressive language. A quote - "You can teach a dog no." Screw him. It's more than just the no issue - Jimmy likes him. He wants to crawl in his lap and hang out with him like every other visitor in the house welcomes him doing. Pretty much everyone else in our lives, everyone else who would visit our home, seems to understand what we are up against. I want him to be external, to make friends, to be affectionate and sweet - if he isn't doing that with kids yet, but is willing to be friendly with adults, it's a start. He actually yelled at my child in front of me. The only reason that I didn't start screaming at him right then and there was all of that b.s. hostess conditioning.
I am completely ashamed that I didn't stand up for my child right then and there. Told the husband that he is not welcome in my home. Fairly passive-agressive, I know, but it's better than doing nothing. God forbid if that man calls me husband and winds up getting me on the phone. If he has opinions on child rearing, he should have one. Oooh... I am ANGRY!!! After that dog crack, I would not piss on that man if he were on fire.
I wish - I have all that passive-agressive girlie conditioning. But I am pretty pissed at one of my husband's friends. He doesn't really like kids in general, but moreover, he doesn't like Jimmy. He apparently has plenty of opinions on how we our raising our child without any sort of consideration of his lack of receptive or expressive language. A quote - "You can teach a dog no." Screw him. It's more than just the no issue - Jimmy likes him. He wants to crawl in his lap and hang out with him like every other visitor in the house welcomes him doing. Pretty much everyone else in our lives, everyone else who would visit our home, seems to understand what we are up against. I want him to be external, to make friends, to be affectionate and sweet - if he isn't doing that with kids yet, but is willing to be friendly with adults, it's a start. He actually yelled at my child in front of me. The only reason that I didn't start screaming at him right then and there was all of that b.s. hostess conditioning.
I am completely ashamed that I didn't stand up for my child right then and there. Told the husband that he is not welcome in my home. Fairly passive-agressive, I know, but it's better than doing nothing. God forbid if that man calls me husband and winds up getting me on the phone. If he has opinions on child rearing, he should have one. Oooh... I am ANGRY!!! After that dog crack, I would not piss on that man if he were on fire.
Another old post
This one was from 12/22
I gave Jacob some Goldfish last night while I fininshing with his dinner and had Jimmy's in the oven. As I was putting the bag away, Jimmy hit me in the leg and said "pish." Since there weren't many left in the bag, I just handed him the whole bag. He sat down on the sofa and finished the rest of the Goldfish.
Of course this stroke of brillance had to be overshadowed by the fact that as I was cooking dinner for myself and the husband, I heard him grunting. I turned to find him standing on the bench in the dining room, sans pants or diaper, taking a dump. Rome wasn't built in a day. Maybe it's time to get that potty training book from the autism resource specialist at his school.
I gave Jacob some Goldfish last night while I fininshing with his dinner and had Jimmy's in the oven. As I was putting the bag away, Jimmy hit me in the leg and said "pish." Since there weren't many left in the bag, I just handed him the whole bag. He sat down on the sofa and finished the rest of the Goldfish.
Of course this stroke of brillance had to be overshadowed by the fact that as I was cooking dinner for myself and the husband, I heard him grunting. I turned to find him standing on the bench in the dining room, sans pants or diaper, taking a dump. Rome wasn't built in a day. Maybe it's time to get that potty training book from the autism resource specialist at his school.
A Post From My Other Blog
I am going to migrate some of my more relevant posts over from my older blog. Most of it will have to do with Jimmy and the whole autism thing. I decided that emotionally I couldn't revist the issue enough to make it worth blogging about, but there is some stuff that I wanted to preserve. This was posted in December of last year. It was when we had the tentative diagnosis, which was confirmed in April.
So I went to Target yesterday - pay the credit card, look for new Thomas stuff for boy senior, get diapers for boy junior. As I am standing there waiting, I look over at this boy. I am watching him - he's about five, but a large five, and he is impatiently waiting for his mother. I listen to some of the sounds he makes, the way he moves, and I realize he is autistic. Moreover, he is pretty severely autistic. As I am standing there, I immediately start the comparison. My son does that, he doesn't do this, he's made that sound before... before I know it, I am completely lost in thought until he bumps into me. His mother runs up and grabs him and kind of blurts, "I'm sorry - he's autistic." I explain that I understand, that my son has a mild spectrum diagnosis. Then she says "Yes, he used to be mild PDD." I felt my knees buckle.
For those who don't know, PDD is Pervasive Developmental Delay, one of the diagnoses being discussed for my son. It never occurred to me that there could be a deterioration or a reversal. In my mind, the worst thing is that he wouldn't talk until he was six or maybe talk very little but be brilliant, some sort of shy computer programming. The best case would be that we all worked hard, he would improve and everything would be normal and I could indulge my dream of soccer mom. What I saw in this boy at Target was a reality I had not considered. Until now. The more I read, the more I see, the more I really have no idea what I am up against, what the future holds for my child. That just kills me.
So I went to Target yesterday - pay the credit card, look for new Thomas stuff for boy senior, get diapers for boy junior. As I am standing there waiting, I look over at this boy. I am watching him - he's about five, but a large five, and he is impatiently waiting for his mother. I listen to some of the sounds he makes, the way he moves, and I realize he is autistic. Moreover, he is pretty severely autistic. As I am standing there, I immediately start the comparison. My son does that, he doesn't do this, he's made that sound before... before I know it, I am completely lost in thought until he bumps into me. His mother runs up and grabs him and kind of blurts, "I'm sorry - he's autistic." I explain that I understand, that my son has a mild spectrum diagnosis. Then she says "Yes, he used to be mild PDD." I felt my knees buckle.
For those who don't know, PDD is Pervasive Developmental Delay, one of the diagnoses being discussed for my son. It never occurred to me that there could be a deterioration or a reversal. In my mind, the worst thing is that he wouldn't talk until he was six or maybe talk very little but be brilliant, some sort of shy computer programming. The best case would be that we all worked hard, he would improve and everything would be normal and I could indulge my dream of soccer mom. What I saw in this boy at Target was a reality I had not considered. Until now. The more I read, the more I see, the more I really have no idea what I am up against, what the future holds for my child. That just kills me.
Dodged a bullet...
Okay, this is my third attempt at blogging. I have two other ones that just kind of died out. One was community related, which just got boring. The other one focusing on autism, but I kind of got sick of talking about it all the time. This time I am going to send this address of to friends - maybe actually knowing someone might actually read what I am writing will keep me honest about following through with it... I will probably share it with a pretty select group at first... and of course anyone that happens to stumble upon it.
Dodged a bullet... Last September my sitter called up and essentially quit on me. No notice whatsoever. I was panic stricken and immediately interviewed two placed. I went with Kindercare. This was the other place where I came very close to sending my boys. Thank God. Reading this just made my hair stand on end!
Dodged a bullet... Last September my sitter called up and essentially quit on me. No notice whatsoever. I was panic stricken and immediately interviewed two placed. I went with Kindercare. This was the other place where I came very close to sending my boys. Thank God. Reading this just made my hair stand on end!
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