Wednesday, January 23, 2008
goodnight
It is 1:40 am I am up working on the computer. I just finished putting together some contracts. A.J.just woke up to go to the bathroom. I'm so happy that she can do that and doesn't have to wear pullups. Then when she went back to bed I gave her a 3rd of a melatonin right away so that she would got back to sleep and not be up for hours. She wanted me to sit with her and rub her feet while she went back to sleep. This is one of my favorite times because she will talk to me at night when falling back asleep. I ask her about school and she tells me interesting things. We had a conversation tonight about how she only has boyfriends and not girlfriends in school. I said that when I was 4 that I played with boys and not girls too. She said, "no mommy, you're not a friend." I don't know what that means.
I booked a wedding today that will take place on her birthday next year. I felt awful doing it, but it will ensure having money for a party for her next year on the sunday, the day after her birthday. That is how I justify it. Booking it will also ensure money for a party for her this year. Or Disney World. CARD is going to give us a letter asking for her to be accommodated at Disney because of her disability and we will be able to go to the front of lines...which will be very cool because I can't see being able to do it if we have to battle with keeping the two of them standing in line.
Bye for now,
me.
Thursday, January 24, 2008
Wednesday, January 16, 2008
This wonderfully Cold and Rainy Morning
Wednesday, January 16, 2008
This Wonderfully Cold and Rainy Morning
This cold winter morning, A.J. got out of her bed, ran into our room and crawled into bed with me and D.H. We all eventually got up at 6:30 am and after I got her dressed for school, she put her baby doll in the little stroller and ran back and forth through the house, "O" chasing her and they were both laughing and having a great time. Before we walked out of the door she went and got socks from her underwear and sock drawer (opening the drawer by herself) and put them on her hands as mittens. I offered her real mittens but she said, "No, I want the socks!" So we went to school with socks on her hands and her two doll's (Christmas presents) for show and tell...whom she named Friendly Girl and Dai Dai. I was a bit worried that kids at school might make fun of the name, Friendly Girl, (never mind Dai Dai...but one thing at a time) and imagined her saying to me someday, "Mom, how could you let me take a doll to preschool and tell all my friends I call it, Friendly Girl?"
So I offered up some suggestions in the car.
"Do you want to give Friendly Girl a different name? How about Alison?
"No, not Alison. Just Friendly Girl."
"Do you like the name Claire?"
"Yes!"
"Shall we call Friendly Girl, Claire?"
"OK...(pause).....No! just Friendly Girl."
"OK."
So we walked to her classroom, socks on hands, Friendly Girl and Dai Dai carried by me. A.J. was very happy when she got to class and ran to pet Lucas's head which I was glad to hear a teacher-aid tell her was not something we do....and tell her very nicely and gently. Lucas doesn't mind though. He adores her. She is pretty well-liked by her classmates which is very comforting for me.
I told her teacher, Brenda, that the sock-mittens were A.J.'s idea, so that she would know I didn't put socks on my childs hands to keep them warm (these teacher tend to gossip a bit I have noticed. You have to keep communication open.)
Brenda laughed about the socks. Then she stopped working on her moring paperwork and said to me, " A.J. has become very adamant about not sharing any of the little doll sets that the kids play with. A.J. wants all of the dolls, every one of them, and won't share with anyone."
I said that on the message board I write on talked about how our kids learn and process things in groups. That when one thing is missing from a group, that is very disturbing. Brenda said she knows that is a symptom of autism, but that yesterday, A.J. was really getting upset about it and she has never done that before.
I said, "A.J. is doing lots of things recently she has never done before. She is playing with Owen now, expressing herself....asking spontaneous questions and getting her pronouns right."
Brenda added that she is also laughing appropriately at funny things.
Through this conversation, I was trying to point out to Brenda that the good comes with the bad and that I am actually excited about the progress, even if it is a bit annoying sometimes. Maybe I should have simply said, "I'll talk to her about it and work with her on it." That way I would have validated what Brenda was saying to me, not just acting like it was actually only a good thing. Hm.
But honestly, I really want A.J. to assert herself because she has never done it before! As a two-year-old she never yelled "MINE!" she just let kids take her toys and she would move on. Now she is yelling "MINE" at "O" when he tries to take a toy she is playing with. She is sticking up for herself and actually learning how to do it.
I know that it is probably no fun for her teacher to have to deal with this type of behavior at school, especially since A.J. has never been a handful before. But this is a GOOD THING! The BEST way for her to learn is to work it out with her peers. I want A.J. to say "NO, it's mine" and not share, and see what happens. She needs to learn that it makes her peers frustrated or angry that they can't play or participate. Maybe I will talk to Brenda about explaining that aspect of it to A.J. I will talk to her about that part of it too. But I am not going to simply tell A.J. to share because she has to or the teacher will be angry. I want her to learn by social trial and error with her peers, just like other kids do, that you need to share...to make and keep friends. She is 2, almost 3 years late expressing and testing that type of social interaction. But I didn't know if she would ever figure it out. Ever. So this is exciting for me. Yeay getting in trouble! :)
It is cold and rainy outside. I've got some laundry going and the sound of the dryer is comforting. I am going to put my cell phone on my bedside table incase either preschool calls, I won't miss it...and take a glorious, comfy, warm morning nap, with the sound of the rain outside my window. I will completely enjoy that I am not at work in an office with brown carpet, getting ready to go to a meeting of some sort, worrying about some social mistake I had made with a coworker the day before.
Nap...here I come.
me.
This Wonderfully Cold and Rainy Morning
This cold winter morning, A.J. got out of her bed, ran into our room and crawled into bed with me and D.H. We all eventually got up at 6:30 am and after I got her dressed for school, she put her baby doll in the little stroller and ran back and forth through the house, "O" chasing her and they were both laughing and having a great time. Before we walked out of the door she went and got socks from her underwear and sock drawer (opening the drawer by herself) and put them on her hands as mittens. I offered her real mittens but she said, "No, I want the socks!" So we went to school with socks on her hands and her two doll's (Christmas presents) for show and tell...whom she named Friendly Girl and Dai Dai. I was a bit worried that kids at school might make fun of the name, Friendly Girl, (never mind Dai Dai...but one thing at a time) and imagined her saying to me someday, "Mom, how could you let me take a doll to preschool and tell all my friends I call it, Friendly Girl?"
So I offered up some suggestions in the car.
"Do you want to give Friendly Girl a different name? How about Alison?
"No, not Alison. Just Friendly Girl."
"Do you like the name Claire?"
"Yes!"
"Shall we call Friendly Girl, Claire?"
"OK...(pause).....No! just Friendly Girl."
"OK."
So we walked to her classroom, socks on hands, Friendly Girl and Dai Dai carried by me. A.J. was very happy when she got to class and ran to pet Lucas's head which I was glad to hear a teacher-aid tell her was not something we do....and tell her very nicely and gently. Lucas doesn't mind though. He adores her. She is pretty well-liked by her classmates which is very comforting for me.
I told her teacher, Brenda, that the sock-mittens were A.J.'s idea, so that she would know I didn't put socks on my childs hands to keep them warm (these teacher tend to gossip a bit I have noticed. You have to keep communication open.)
Brenda laughed about the socks. Then she stopped working on her moring paperwork and said to me, " A.J. has become very adamant about not sharing any of the little doll sets that the kids play with. A.J. wants all of the dolls, every one of them, and won't share with anyone."
I said that on the message board I write on talked about how our kids learn and process things in groups. That when one thing is missing from a group, that is very disturbing. Brenda said she knows that is a symptom of autism, but that yesterday, A.J. was really getting upset about it and she has never done that before.
I said, "A.J. is doing lots of things recently she has never done before. She is playing with Owen now, expressing herself....asking spontaneous questions and getting her pronouns right."
Brenda added that she is also laughing appropriately at funny things.
Through this conversation, I was trying to point out to Brenda that the good comes with the bad and that I am actually excited about the progress, even if it is a bit annoying sometimes. Maybe I should have simply said, "I'll talk to her about it and work with her on it." That way I would have validated what Brenda was saying to me, not just acting like it was actually only a good thing. Hm.
But honestly, I really want A.J. to assert herself because she has never done it before! As a two-year-old she never yelled "MINE!" she just let kids take her toys and she would move on. Now she is yelling "MINE" at "O" when he tries to take a toy she is playing with. She is sticking up for herself and actually learning how to do it.
I know that it is probably no fun for her teacher to have to deal with this type of behavior at school, especially since A.J. has never been a handful before. But this is a GOOD THING! The BEST way for her to learn is to work it out with her peers. I want A.J. to say "NO, it's mine" and not share, and see what happens. She needs to learn that it makes her peers frustrated or angry that they can't play or participate. Maybe I will talk to Brenda about explaining that aspect of it to A.J. I will talk to her about that part of it too. But I am not going to simply tell A.J. to share because she has to or the teacher will be angry. I want her to learn by social trial and error with her peers, just like other kids do, that you need to share...to make and keep friends. She is 2, almost 3 years late expressing and testing that type of social interaction. But I didn't know if she would ever figure it out. Ever. So this is exciting for me. Yeay getting in trouble! :)
It is cold and rainy outside. I've got some laundry going and the sound of the dryer is comforting. I am going to put my cell phone on my bedside table incase either preschool calls, I won't miss it...and take a glorious, comfy, warm morning nap, with the sound of the rain outside my window. I will completely enjoy that I am not at work in an office with brown carpet, getting ready to go to a meeting of some sort, worrying about some social mistake I had made with a coworker the day before.
Nap...here I come.
me.
How do you spell spinich?
Tuesday, January 15, 2008
how do you spell spinich?
Today the threelac came in the mail. It is the probiotic that Jennier McCarthy talks about in her book. She thought that it helped her little boy a lot. It is supposed to tackle candida (yeast) inside the body. Who knows. A.J. took her first dose this evening. It is a fine powder that I put in her diluted, organic apple juice. She was quite happy drinking it all up. She also had some flax seed oil today, but no vitimin.
This morning she was explosive, I don't know why, and it was almost impossible getting her out of the door for school. She just wanted to stand there and didn't want to walk out of the door and get in the car. DH had to carry her out there in his boxers and put her in her car seat. It was 29 degrees outside. (I was holding the back pack, extra clothes and her lunch) Then when we got to school and I was getting her out of the car she said. "Are my friends wearing long sleeves or short sleeves today?"
I said, "Definitely long sleeves."
That seemed to make her happy since she was wearing long sleeves too. I suddenly realized that the reason she often demands short sleeves, even on fairly cold days (she just asks for a sweater that she can take off at school) because she thinks her friends wear short sleeves. I can't believe that she cares about fitting in and what her friends are wearing. I know she likes to fit in but I didn't know she was that aware of it and I was both excited about it, and also a bit sad that she was starting that...I care about dumb stuff like wearing short sleeves on a cold day because I think my friends do it..kind of kid thing. But it is so "typical" of a 4, almost 5-year-old, that I should be very happy.
This evening she was very alert and talked more than she ever has. She was as alert as before her autism set in at age 2. She asked questions. She initiated conversation. She very much enjoyed her dinner too...rice pasta (with fresh organic spinich cooked with the pasta so the pasta would boil in the spinich water) with chicken cut up into tiny pieces, sauteed with ginger and garlic salt. I let her put some parmesan cheese on it too which I know I shouldn't but she loves it and it makes her eat her spinich.
me.
how do you spell spinich?
Today the threelac came in the mail. It is the probiotic that Jennier McCarthy talks about in her book. She thought that it helped her little boy a lot. It is supposed to tackle candida (yeast) inside the body. Who knows. A.J. took her first dose this evening. It is a fine powder that I put in her diluted, organic apple juice. She was quite happy drinking it all up. She also had some flax seed oil today, but no vitimin.
This morning she was explosive, I don't know why, and it was almost impossible getting her out of the door for school. She just wanted to stand there and didn't want to walk out of the door and get in the car. DH had to carry her out there in his boxers and put her in her car seat. It was 29 degrees outside. (I was holding the back pack, extra clothes and her lunch) Then when we got to school and I was getting her out of the car she said. "Are my friends wearing long sleeves or short sleeves today?"
I said, "Definitely long sleeves."
That seemed to make her happy since she was wearing long sleeves too. I suddenly realized that the reason she often demands short sleeves, even on fairly cold days (she just asks for a sweater that she can take off at school) because she thinks her friends wear short sleeves. I can't believe that she cares about fitting in and what her friends are wearing. I know she likes to fit in but I didn't know she was that aware of it and I was both excited about it, and also a bit sad that she was starting that...I care about dumb stuff like wearing short sleeves on a cold day because I think my friends do it..kind of kid thing. But it is so "typical" of a 4, almost 5-year-old, that I should be very happy.
This evening she was very alert and talked more than she ever has. She was as alert as before her autism set in at age 2. She asked questions. She initiated conversation. She very much enjoyed her dinner too...rice pasta (with fresh organic spinich cooked with the pasta so the pasta would boil in the spinich water) with chicken cut up into tiny pieces, sauteed with ginger and garlic salt. I let her put some parmesan cheese on it too which I know I shouldn't but she loves it and it makes her eat her spinich.
me.
Tuesday, January 15, 2008
Friendship Put To The Test
Tonight I talked to my best friend, Taylor (since 7th grade) who's daughter, Maddie, is A.J.'s exact age. We were pregnant together with our girls. Taylor talked about how Maddie is all into soccer now and scores goals and she is really good. It was hard to listen without a little resentment, even though I am happy for them at the same time. It is very difficult to feel like that. It is sometimes easier to avoid even talking to her, to avoid the pain of hearing what A.J. would be doing if she didn't have autism. But I don't settle for that and keep working on one of my most important friendships, if not thee most important.
A.J. won't go after a soccer ball, when she does have it, if anyone tries to take it away from her she lets them have it then wanders off the field. When A.J. was 18 months, she would kick the ball around with D.H. all the time and she was an amazing little soccer player. I know that if she didn't have autism she would be so good at it...just a little star. She has the build for it. She isn't a skinny little thing like I was as a small child. She is muscular and solid like D.H. I find myself hoping that maybe....maybe, if I keep working on researching her treatments and the right nutrition, that maybe there is still a chance that she will aquire the confidence and skill it would take for her to be the star soccer player she was meant to be, before this thing...this autism crap robbed her of her gross motor skills. It robbed her of her fine motor skills too...she can barely cut paper. She is aware now of these difficulties she has and so I am going to try to help her. I want her to be able to ride a bike with us, like Maddie does all the time. I want that.
I don't think that Taylor knows that it is not OK to me that A.J. can't play soccer. I haven't come to terms with it and I haven't let go of the dream that she will be able to get "it" all back...the old A.J. before the autism regression. I don't want to lump A.J. into the autism catagory that does not recover. I want her to be one of these kids that gets better, that is able to ride a bike and run after a ball. So when Taylor puts A.J. in the category of other children she knows with autism, although it makes sense, I don't want to hear that Taylor has settled with A.J. being not as skilled as Maddie at soccer. A.J. is obviously not as skilled...but like I said...that is not OK with me and talking about it pretty much breaks my heart. It also breaks my heart that such an important friendship is so often put to the test because of this. Taylor is there for me and understands me in a way that no one else does. So sometimes I just can't beleive how she has no understanding of this whatsoever. I have tried to talk to her about it, but it is like she keeps forgetting or something. But on the other hand, she needs to be able to talk to me about her daughter. I know that. How do I ask her to leave out the soccer...and the reading...and cutting paper and wrapping Christmas presents by herself and the amazing and wonderful stuff Maddie does? How, as a best friend can I ask her not to share the triumphs of her little girl with me...that A.J. is so far away from doing? I don't. I don't and I just listen and I am sad and freaked out at how different our worlds are, and then I get over it. But sometimes I don't feel like being sad so I find myself calling her less often. But I miss her. Maybe I'll tell her.
me.
A.J. won't go after a soccer ball, when she does have it, if anyone tries to take it away from her she lets them have it then wanders off the field. When A.J. was 18 months, she would kick the ball around with D.H. all the time and she was an amazing little soccer player. I know that if she didn't have autism she would be so good at it...just a little star. She has the build for it. She isn't a skinny little thing like I was as a small child. She is muscular and solid like D.H. I find myself hoping that maybe....maybe, if I keep working on researching her treatments and the right nutrition, that maybe there is still a chance that she will aquire the confidence and skill it would take for her to be the star soccer player she was meant to be, before this thing...this autism crap robbed her of her gross motor skills. It robbed her of her fine motor skills too...she can barely cut paper. She is aware now of these difficulties she has and so I am going to try to help her. I want her to be able to ride a bike with us, like Maddie does all the time. I want that.
I don't think that Taylor knows that it is not OK to me that A.J. can't play soccer. I haven't come to terms with it and I haven't let go of the dream that she will be able to get "it" all back...the old A.J. before the autism regression. I don't want to lump A.J. into the autism catagory that does not recover. I want her to be one of these kids that gets better, that is able to ride a bike and run after a ball. So when Taylor puts A.J. in the category of other children she knows with autism, although it makes sense, I don't want to hear that Taylor has settled with A.J. being not as skilled as Maddie at soccer. A.J. is obviously not as skilled...but like I said...that is not OK with me and talking about it pretty much breaks my heart. It also breaks my heart that such an important friendship is so often put to the test because of this. Taylor is there for me and understands me in a way that no one else does. So sometimes I just can't beleive how she has no understanding of this whatsoever. I have tried to talk to her about it, but it is like she keeps forgetting or something. But on the other hand, she needs to be able to talk to me about her daughter. I know that. How do I ask her to leave out the soccer...and the reading...and cutting paper and wrapping Christmas presents by herself and the amazing and wonderful stuff Maddie does? How, as a best friend can I ask her not to share the triumphs of her little girl with me...that A.J. is so far away from doing? I don't. I don't and I just listen and I am sad and freaked out at how different our worlds are, and then I get over it. But sometimes I don't feel like being sad so I find myself calling her less often. But I miss her. Maybe I'll tell her.
me.
High Functioning Autism vs. Aspergers
Monday, January 14, 2008
High Functioning Autism vs. Aspergers
I watched a special on PBS last night about an amazing guy with Aspergers. DH and I watched it together with fascination, horror and hope. It is interesting how Aspergers and autism are different. Aspergers is not just simply a higher form of autism. It is different. A.J. is higher functioning than the guy we watched on TV who had aspergers, and she simply has autism.
I'm going to break it down in what I have observed:
Aspergers.....no problem learning to talk (even if a bit delayed in starting to talk)
A.J...Started to talk early but problems with putting sentences together and also learning abstract concepts...such as pronouns and "wh" questions.
Aspergers...can not read social cues
A.J....can read social cues very well and has a hard time dealing with them (throws herself on the floor when "O" gets hurt)
Aspergers....talks all the time and doesn't know when to stop...all about "me"
A.J.....doesn't talk all the time and is socially aware that it is difficult for her to have conversations. (Although she was very outgoing as a toddler, she is now shy after loosing confidence as a result of the onset of suddenly losing gross and fine motor skills and language at age 2.) From age 2 to 4, she had difficulty with the concept of "self" and for a while there, I wondered if she even knew she existed and was not just an observer. She seemed to not realize that anything was specifically for her benefit. But now she does. She likes to look at herself in the mirror and admire her hair.
Aspergers.....tries to express themselves constantly and you can easily read a their emotions in their faces.
A.J.....rarely tries to express herself and it is very very very hard to read her emotions in her facial expressions and gestures. It is hard to know that she understands anything as she won't make eye contact and she either seems to ignore, walk away, or talks/mutters over you while you try and have a conversation with her.
So I try and gauge her level of understanding by thinking of how much my friend's "typical" daughter, who is 6 days younger than A.J., can understand stuff. Before I try and talk to A.J. about anything with importance I think to myself, "Would Maddie understand this?" If the answer is yes, I go ahead and attempt the conversation with A.J. and have been pleasantly surprised by the results. (See mom tip number one post for an example of a conversation I had with her that she understood...and I didn't know if she would.)
It is kind of weird that I don't even know how much A.J. understands as I am her mom...so how can I expect other people to ever truly understand that she is brilliant..when I can't even tell except for when I get blindsided by it? (I'll give you an example in a later post.) Also, it is so easy to talk as if she isn't in the room as she never glances over, even when you mention her name. But I know for sure that she soaks things in. Sometimes I will hear a sentence that I say to DH, be immediately repeated in the other room as a conversation between her dolls.
OK, back to the breakdown...
Aspergers.....hyper
A.J.......a bit lethargic.
Both have trouble with eye contact.
I am still learning and I could very well be wrong about the differences. I don't even know if A.J is simply classic autism. These kids are all over the "spectrum" and all have something different going on with them. That probably has something to do with the body's break down of proteins and food intolerances...we don't know.
Feedback is appreciated. I want to listen and learn...I'm thirsty for it!!!
me.
High Functioning Autism vs. Aspergers
I watched a special on PBS last night about an amazing guy with Aspergers. DH and I watched it together with fascination, horror and hope. It is interesting how Aspergers and autism are different. Aspergers is not just simply a higher form of autism. It is different. A.J. is higher functioning than the guy we watched on TV who had aspergers, and she simply has autism.
I'm going to break it down in what I have observed:
Aspergers.....no problem learning to talk (even if a bit delayed in starting to talk)
A.J...Started to talk early but problems with putting sentences together and also learning abstract concepts...such as pronouns and "wh" questions.
Aspergers...can not read social cues
A.J....can read social cues very well and has a hard time dealing with them (throws herself on the floor when "O" gets hurt)
Aspergers....talks all the time and doesn't know when to stop...all about "me"
A.J.....doesn't talk all the time and is socially aware that it is difficult for her to have conversations. (Although she was very outgoing as a toddler, she is now shy after loosing confidence as a result of the onset of suddenly losing gross and fine motor skills and language at age 2.) From age 2 to 4, she had difficulty with the concept of "self" and for a while there, I wondered if she even knew she existed and was not just an observer. She seemed to not realize that anything was specifically for her benefit. But now she does. She likes to look at herself in the mirror and admire her hair.
Aspergers.....tries to express themselves constantly and you can easily read a their emotions in their faces.
A.J.....rarely tries to express herself and it is very very very hard to read her emotions in her facial expressions and gestures. It is hard to know that she understands anything as she won't make eye contact and she either seems to ignore, walk away, or talks/mutters over you while you try and have a conversation with her.
So I try and gauge her level of understanding by thinking of how much my friend's "typical" daughter, who is 6 days younger than A.J., can understand stuff. Before I try and talk to A.J. about anything with importance I think to myself, "Would Maddie understand this?" If the answer is yes, I go ahead and attempt the conversation with A.J. and have been pleasantly surprised by the results. (See mom tip number one post for an example of a conversation I had with her that she understood...and I didn't know if she would.)
It is kind of weird that I don't even know how much A.J. understands as I am her mom...so how can I expect other people to ever truly understand that she is brilliant..when I can't even tell except for when I get blindsided by it? (I'll give you an example in a later post.) Also, it is so easy to talk as if she isn't in the room as she never glances over, even when you mention her name. But I know for sure that she soaks things in. Sometimes I will hear a sentence that I say to DH, be immediately repeated in the other room as a conversation between her dolls.
OK, back to the breakdown...
Aspergers.....hyper
A.J.......a bit lethargic.
Both have trouble with eye contact.
I am still learning and I could very well be wrong about the differences. I don't even know if A.J is simply classic autism. These kids are all over the "spectrum" and all have something different going on with them. That probably has something to do with the body's break down of proteins and food intolerances...we don't know.
Feedback is appreciated. I want to listen and learn...I'm thirsty for it!!!
me.
Monday, January 14, 2008
Amazed at other mom advice
So I wrote to another mom on myspace who has children who are "recovered" from autism. I emailed her some information about A.J. and this is what she wrote back:
(((((Sounds like you have alot of low tone issues meaning you are likely low in carnintine as well as fat and protien digestion.....doing enzymes specifically pancreatic ones will help, things like evening prime rose oil, CLO (do non soy based ones like kirkmans) and then taking carnintine (more likly acetyl-l-carnitine) with it for best transport, my daughter used to cry just going up and down the stairs with it, she put on 10 pounds LITERALLY in 2 weeks on this, my son couldn't ride a bike, in 4 days on it, drove it across the parking lot.....after MONTHS of working on it in OT. doing an EFA test can also prove helpful..... sounds like she has some food allergies and a long history of them. is she on a special diet? have you done IGG and or IGE testing? avoiding gluten casein and soy? your CLO has soy in it from nordic naturals would take that out. try an experiment, here is what results I would expect if I am right. try doing taurine 500 mgs for lunch at first and then supper after 4 days of it at lunch with the Carnintine and or biotin and I bet your stools turn brown supporting my not absorbing fats therory, good news is alot of what you are stuggleing can be undone, it has to do with metabolic imbalence.....)))))
I feel pretty amazed by her answer. I never realized that A.J.'s stool color could indicate a problem with her protein digestion. I am also amazed at this woman just telling me what she thinks and not beating around the bush. I think that autism mom's are so over doctors not giving us useful information, that we just give it to each other.
I have no idea what carnintine biotin or taurine is so my next job is to research that online. I don't know what IGG or IGE testing is so I will ask her that and also look it up. I didn't know the CLO nordic naturals (fish oil) has soy in it.
OK, so I am off to do some research.
Shena
(((((Sounds like you have alot of low tone issues meaning you are likely low in carnintine as well as fat and protien digestion.....doing enzymes specifically pancreatic ones will help, things like evening prime rose oil, CLO (do non soy based ones like kirkmans) and then taking carnintine (more likly acetyl-l-carnitine) with it for best transport, my daughter used to cry just going up and down the stairs with it, she put on 10 pounds LITERALLY in 2 weeks on this, my son couldn't ride a bike, in 4 days on it, drove it across the parking lot.....after MONTHS of working on it in OT. doing an EFA test can also prove helpful..... sounds like she has some food allergies and a long history of them. is she on a special diet? have you done IGG and or IGE testing? avoiding gluten casein and soy? your CLO has soy in it from nordic naturals would take that out. try an experiment, here is what results I would expect if I am right. try doing taurine 500 mgs for lunch at first and then supper after 4 days of it at lunch with the Carnintine and or biotin and I bet your stools turn brown supporting my not absorbing fats therory, good news is alot of what you are stuggleing can be undone, it has to do with metabolic imbalence.....)))))
I feel pretty amazed by her answer. I never realized that A.J.'s stool color could indicate a problem with her protein digestion. I am also amazed at this woman just telling me what she thinks and not beating around the bush. I think that autism mom's are so over doctors not giving us useful information, that we just give it to each other.
I have no idea what carnintine biotin or taurine is so my next job is to research that online. I don't know what IGG or IGE testing is so I will ask her that and also look it up. I didn't know the CLO nordic naturals (fish oil) has soy in it.
OK, so I am off to do some research.
Shena
Figuring out a little about Carnitine and Taurine
Monday, January 14, 2008
Figuring out a little about Carnitine and Taurine
(Read the post before this before reading this post)
CARNITINE
The highest concentrations of carnitine are found in red meat and dairy products. Other natural sources of carnitine include nuts and seeds (e.g. pumpkin, sunflower, sesame), legumes or pulses (beans, peas, lentils, peanuts), vegetables (artichokes, asparagus, beet greens, broccoli, brussels sprouts, collard greens, garlic, mustard greens, okra, parsley), fruits (apricots, bananas), cereals (buckwheat, corn, millet, oatmeal, rice bran, rye, whole wheat, wheat bran, wheat germ) and other 'health' foods (bee pollen, brewer's yeast, carob, and kale).
A.J. eats none of the food listed above, except occasionally, peas and broccoli, so it is very likely that she does need more carnitine. I will have to step up the red meat. Yuck. A different diet that promotes low yeast says not to eat nut butters. So I took them away a few days ago. She has actually been doing very well since I took them away and so I don't want to give them back. Maybe she has an intolerence to nuts. I will be able to get her to eat artichokes, broccoli and red meat...I think. I will have to give her vitimin C with these foods to help absorb the carnitine.
TAURINE
Recent studies have also shown that taurine can influence (and possibly reverse) defects in nerve blood flow, motor nerve conduction velocity, and nerve sensory thresholds in experimental diabetic neuropathic rats. Taurine levels were found to be significantly lower in vegans than in a control group on a standard American diet.
Taurine is an ingredient in many energy drinks and energy products.
(cats) Taurine is essential for cat health, as a cat cannot synthesize the compound. Taurine is now a requirement of the AAFCO and any dry or wet food product labeled approved by the AAFCO should have a minimum of 0.1% taurine.
According to some animal studies, taurine produced an anxiolytic-like effect in mice and may act as a modulator or anti-anxiety agent in the central nervous system
OK, so I need tuarine, my cat needs taurine and my duaghter needs it too. It looks like vitamin water Power C Dragon Fruit Flavor has some in it. That seems like the only "energy drink" without caffine in it too.
This is the final thing I read:
Despite its presence in many energy drinks, taurine has not been shown to be energy-giving. A study of mice hereditarily unable to transport taurine suggests that it is needed for proper maintenance and functioning of skeletal muscles.[25]
Figuring out a little about Carnitine and Taurine
(Read the post before this before reading this post)
CARNITINE
The highest concentrations of carnitine are found in red meat and dairy products. Other natural sources of carnitine include nuts and seeds (e.g. pumpkin, sunflower, sesame), legumes or pulses (beans, peas, lentils, peanuts), vegetables (artichokes, asparagus, beet greens, broccoli, brussels sprouts, collard greens, garlic, mustard greens, okra, parsley), fruits (apricots, bananas), cereals (buckwheat, corn, millet, oatmeal, rice bran, rye, whole wheat, wheat bran, wheat germ) and other 'health' foods (bee pollen, brewer's yeast, carob, and kale).
A.J. eats none of the food listed above, except occasionally, peas and broccoli, so it is very likely that she does need more carnitine. I will have to step up the red meat. Yuck. A different diet that promotes low yeast says not to eat nut butters. So I took them away a few days ago. She has actually been doing very well since I took them away and so I don't want to give them back. Maybe she has an intolerence to nuts. I will be able to get her to eat artichokes, broccoli and red meat...I think. I will have to give her vitimin C with these foods to help absorb the carnitine.
TAURINE
Recent studies have also shown that taurine can influence (and possibly reverse) defects in nerve blood flow, motor nerve conduction velocity, and nerve sensory thresholds in experimental diabetic neuropathic rats. Taurine levels were found to be significantly lower in vegans than in a control group on a standard American diet.
Taurine is an ingredient in many energy drinks and energy products.
(cats) Taurine is essential for cat health, as a cat cannot synthesize the compound. Taurine is now a requirement of the AAFCO and any dry or wet food product labeled approved by the AAFCO should have a minimum of 0.1% taurine.
According to some animal studies, taurine produced an anxiolytic-like effect in mice and may act as a modulator or anti-anxiety agent in the central nervous system
OK, so I need tuarine, my cat needs taurine and my duaghter needs it too. It looks like vitamin water Power C Dragon Fruit Flavor has some in it. That seems like the only "energy drink" without caffine in it too.
This is the final thing I read:
Despite its presence in many energy drinks, taurine has not been shown to be energy-giving. A study of mice hereditarily unable to transport taurine suggests that it is needed for proper maintenance and functioning of skeletal muscles.[25]
A good day
Today A.J. was very alert and pretty much amazing. She played with her new dolls, changing their plastic snap-on clothes, and talking away and having a great time. She did really well in speech this afternoon and added on her own comments and spontaneous sentences during turn-taking games that Diane played with her.
At dinner she looked right at "O" and said, "What is your favorite planet O?"
He said, "Jupiter. What is your favorite planet A.J.?)
She said, "Saturn!"
That was the first time she has ever looked right at him and spontaneously asked him a question that wasn't simply to get something she wanted. She and Diane worked on asking questions today in speech. Diane has opened up so many doors for A.J. We are paying for her house visits out of pocket. We did get funding for speech finally, from CMS, but it only covers SLP's that are with the University Speech Center. We couldn't stop having Diane come to the house, because of how far she has brought A.J.. So we cut back to once a week and go to the University SLP once a week. It is pretty interesting because Diane works on sentences and giving A.J. tools to make conversation. At the University speech center, they work hard on eye contact and approaching people. They do this with dolls. A.J. doesn't have the dolls look at each other, but in her therapy they work on having her dolls look at each other. This teaches her the concept and idea of it without her having to look into anyone's eyes which is very hard for her I think. Sometimes when I talk to her she puts her hand up to shield my eyes so she doesn't have to look at them while I am talking to her. I think I need to teach her to look at people's ears or hair. I will talk to her SLP about that.
Of course I wonder if it because I stopped giving her almond butter that she is doing so well. Perhaps she is allergic to nuts and that was clouding her a bit last week? Or maybe it is the flax seed oil I am putting in her juice over the past 3 days? Who knows. I don't know. D.H. told me today when I said that I didn't want "O" to drink milk until his night cough stops...in case it is allergies, that I don't know what I am talking about. I said, "You are right. I have no idea what I am talking about. But I'm trying."
He agreed.
When A.J. has days like today I feel like she is going to be OK, that she is going to be able to live on her own and have relationships and maybe even a family. I think that she is moving forwards and she has a chance at independent happiness. I think that when she is a teenager, maybe she will be like Heather on "Next Top Model."
When I watched Heather on that show I was like, "Oh my God, she is just like A.J." Heather talked to the camera about how she had Asperger's...but I could tell that she didn't have Aspergers. She didn't rattle off constant sentences and information or blatantly miss social cues which are traits of Aspergers. Instead, she seemed like she was pretty much able to read social cues. Her specific difficulty was that she couldn't give cues, or express her emotions in her face or actions, which resulted in her being misunderstood by the other girls. For example one of the girls said she was tired of Heather not trying. Heather's lack of facial expression and her distracted, aloof demeanor caused her to appear like she didn't care about stuff, and that she "wasn't trying." When she truly was trying so hard.
"Close the door Heather" One girl called to Heather as she was the last of them all walking out of the apartment building...and had absent mindedly left the door wide open. Heather hurried back to close the door behind them.
I so saw much of A.J. in her. She was distracted, like A.J. She forgot to close doors, she got lost, she was obviously socially awkward in a way that didn't make people feel sorry for her, and more like...what's her problem?
Heather had Autism, just like A.J. And Heather was a smart, beautiful amazing person and I hoped it was, perhaps, like looking at A.J. in the future, except there is no way A.J. will be that tall!
At some points during the show, Heather was made fun of, and teased by some of the girls because she was such a target. I just wanted to jump in the TV set and wring that mean girl's neck. There was one point in the show when all the girls went to China and went to their new hotel and everyone went to grab a bed. Heather was last to go and get a bed. There were all single beds and one double bed. The mean girl had the double bed and said she wasn't sharing...leaving Heather without a bed. It was just rude and she was playing on her social disability. Heather started to cry and the mean girl thought it was funny. It was like a power game and all I could see was how pathetic this girl was to try and feel powerful from preying on someone who needed help. It was pretty disgusting.
So watching this made me also feel like I was watching how A.J could be bullied as a teenager, or older. I don't know how I can protect her for her whole life. I feel like I will take it year by year, month by month...day by day. I grew up fiercely protecting my younger sister. She can fend for herself now. Now I will have to fiercely protect A.J. but I have a feeling it will be harder.
me.
p.s. I just read this to DH and he said he gave A.J.almond butter this morning at breakfast.
At dinner she looked right at "O" and said, "What is your favorite planet O?"
He said, "Jupiter. What is your favorite planet A.J.?)
She said, "Saturn!"
That was the first time she has ever looked right at him and spontaneously asked him a question that wasn't simply to get something she wanted. She and Diane worked on asking questions today in speech. Diane has opened up so many doors for A.J. We are paying for her house visits out of pocket. We did get funding for speech finally, from CMS, but it only covers SLP's that are with the University Speech Center. We couldn't stop having Diane come to the house, because of how far she has brought A.J.. So we cut back to once a week and go to the University SLP once a week. It is pretty interesting because Diane works on sentences and giving A.J. tools to make conversation. At the University speech center, they work hard on eye contact and approaching people. They do this with dolls. A.J. doesn't have the dolls look at each other, but in her therapy they work on having her dolls look at each other. This teaches her the concept and idea of it without her having to look into anyone's eyes which is very hard for her I think. Sometimes when I talk to her she puts her hand up to shield my eyes so she doesn't have to look at them while I am talking to her. I think I need to teach her to look at people's ears or hair. I will talk to her SLP about that.
Of course I wonder if it because I stopped giving her almond butter that she is doing so well. Perhaps she is allergic to nuts and that was clouding her a bit last week? Or maybe it is the flax seed oil I am putting in her juice over the past 3 days? Who knows. I don't know. D.H. told me today when I said that I didn't want "O" to drink milk until his night cough stops...in case it is allergies, that I don't know what I am talking about. I said, "You are right. I have no idea what I am talking about. But I'm trying."
He agreed.
When A.J. has days like today I feel like she is going to be OK, that she is going to be able to live on her own and have relationships and maybe even a family. I think that she is moving forwards and she has a chance at independent happiness. I think that when she is a teenager, maybe she will be like Heather on "Next Top Model."
When I watched Heather on that show I was like, "Oh my God, she is just like A.J." Heather talked to the camera about how she had Asperger's...but I could tell that she didn't have Aspergers. She didn't rattle off constant sentences and information or blatantly miss social cues which are traits of Aspergers. Instead, she seemed like she was pretty much able to read social cues. Her specific difficulty was that she couldn't give cues, or express her emotions in her face or actions, which resulted in her being misunderstood by the other girls. For example one of the girls said she was tired of Heather not trying. Heather's lack of facial expression and her distracted, aloof demeanor caused her to appear like she didn't care about stuff, and that she "wasn't trying." When she truly was trying so hard.
"Close the door Heather" One girl called to Heather as she was the last of them all walking out of the apartment building...and had absent mindedly left the door wide open. Heather hurried back to close the door behind them.
I so saw much of A.J. in her. She was distracted, like A.J. She forgot to close doors, she got lost, she was obviously socially awkward in a way that didn't make people feel sorry for her, and more like...what's her problem?
Heather had Autism, just like A.J. And Heather was a smart, beautiful amazing person and I hoped it was, perhaps, like looking at A.J. in the future, except there is no way A.J. will be that tall!
At some points during the show, Heather was made fun of, and teased by some of the girls because she was such a target. I just wanted to jump in the TV set and wring that mean girl's neck. There was one point in the show when all the girls went to China and went to their new hotel and everyone went to grab a bed. Heather was last to go and get a bed. There were all single beds and one double bed. The mean girl had the double bed and said she wasn't sharing...leaving Heather without a bed. It was just rude and she was playing on her social disability. Heather started to cry and the mean girl thought it was funny. It was like a power game and all I could see was how pathetic this girl was to try and feel powerful from preying on someone who needed help. It was pretty disgusting.
So watching this made me also feel like I was watching how A.J could be bullied as a teenager, or older. I don't know how I can protect her for her whole life. I feel like I will take it year by year, month by month...day by day. I grew up fiercely protecting my younger sister. She can fend for herself now. Now I will have to fiercely protect A.J. but I have a feeling it will be harder.
me.
p.s. I just read this to DH and he said he gave A.J.almond butter this morning at breakfast.
Friday, January 11, 2008
Mom tip #1
When your kid wakes up with a nightmare, or is afraid to fall asleep because of monsters in the closet, give her/him a teddy bear such as a lion and tell her to take this lion into her dreams. He is the strongest lion and he is her friend and he will protect her in her dreams and from anything that scares her. Just hold on tight and he will keep her safe. That helped A.J. when she woke up talking about bears that bite. I told her this and she held him tight and went back to sleep.
Wednesday, January 9, 2008
Fairies and Ringworm
Today I was sitting outside on a deck chair in the back yard. O was playing with his Go Diego Go figure and A.J. was sitting in a little wooden rocking chair, rocking back and forth. The way the wind blew and the temperature and the smell of firewood in the air took me back to when I played in my Grandma Hilda's back garden when I was A.J.'s age. My sisters and I played games of setting up fairy houses in the rocks that lay about Hilda's garden. We made little chairs and tables and gathered small berries for their food. I was sure that the fairies came and used the houses we created, after we left, when no one was around.
Today I looked at A.J. rocking back and forth and back and forth in the rocking chair and I thought of how I would have liked to have another child, a little girl, perhaps one who would want to play fairies in the back yard. Then A.J. got up and went inside for a little while. She came back to the screen door and pushed it to come out to the back garden and I noticed the toy she had brought from inside was her small Tinkerbell fairy doll. It was perfect and I was so happy, as if she had read my mind. I gathered her up and gave her some kisses and knew that I don't need another little girl. I just need A.J. and that she has all the imagination in the world. Right now I am still sitting on the deck chair. "O" is pushing a plastic wheelbarrow around the yard and A.J. is playing with Tinkerbell and Peter Pan figure dolls. The weather is still perfect. I can hear the traffic over on University Avenue, just a house and a university-jewish-center-building away. A.J. is letting O. play with her dolls from Christmas.
I have read some stuff about yeast/Candida and how it affects children with autism. Jennie McCarthy talks about it in her book, and there is plenty of literature about it online. I trust what parents say because when I do as parents recommend I see results. The mainstream medical community has no interest in trying anything that has not been handed down to them from mission control in a very long memo. What I mean by this is that, for example, I read the most recent medical journal put out by Pediatric Health Alliance to it's doctors, on the explosion in autism and what to do about it. Mostly it said to screen for it a lot more. But it does not recommend any treatments at all. A parent has to go online and ask other parents about that. Anyway, so I have not tried any anti fungals on A.J. yet. Parent's swear by this, but it was only 3 months ago that we got a stool sample done for Avery to see if there was yeast in it, and there wasn't any. So it seems reasonable to not use a yeast medication if there is no yeast in her poop right? But apparently not. Apparently it is more complicated than that. There are different strains of yeast (Candida) that do not show up on the lab tests they do on her stool.
The parents on the website I post on say that kids with autism are plagued by candida and it needs to be resolved. They say that there is a yeast "die off" period when the kid freaks out for a couple of weeks before getting much better. I have read that sugar feeds yeast. So my poor little one gets very minimal amounts of sugar. As a result, when she does get sugar she acts like a maniac. It is interesting though. If I give A.J. sugar she freaks out, if I give "O" sugar I see no change. It seems like what autism does is make everything she ingests, affect her whole body, and her actions and mood and comfort level. That is why you will see parents of children with autism, micromanage their child's diet. And parents who do not have to deal with it, don't understand or even believe it. The immune defficiency or, over sensitive to environmental toxins and even certain food theory is not "proven' just talked about.
So, this morning I took A.J. to the doctor for ringworm. She has had the fungus on her arm for a while and it appears to be spreading a bit. I asked her doctor for Diflucan and the doctor said you don't give Diflucan for ringworm. I can just hear her telling the story now, "I had a parent ask for Diflucan for ringworm ha ha ah!" I explained that I thought that the fungus issue was an ongoing problem. Also I just wanted a reason for her to prescribe it to Avery. I knew the Dr. wouldn't just because A.J. has autism. I don't think that is unreasonable, but if the dr. is not an autism specialist and is not educated on the new findings then she just won't know. Pediatrician's are simply bound by their text books, medical "alliances" and never venture out any further.
Dr Mom note:
I have discovered that grapefruit seed extract oil (more so than tea tree oil) is helping to get rid of the ringworm really well. I read about it online and I am switching from the Lotrimin and using this, since the ringworm builds up resistance after a while to each anti fungal.
Today I looked at A.J. rocking back and forth and back and forth in the rocking chair and I thought of how I would have liked to have another child, a little girl, perhaps one who would want to play fairies in the back yard. Then A.J. got up and went inside for a little while. She came back to the screen door and pushed it to come out to the back garden and I noticed the toy she had brought from inside was her small Tinkerbell fairy doll. It was perfect and I was so happy, as if she had read my mind. I gathered her up and gave her some kisses and knew that I don't need another little girl. I just need A.J. and that she has all the imagination in the world. Right now I am still sitting on the deck chair. "O" is pushing a plastic wheelbarrow around the yard and A.J. is playing with Tinkerbell and Peter Pan figure dolls. The weather is still perfect. I can hear the traffic over on University Avenue, just a house and a university-jewish-center-building away. A.J. is letting O. play with her dolls from Christmas.
I have read some stuff about yeast/Candida and how it affects children with autism. Jennie McCarthy talks about it in her book, and there is plenty of literature about it online. I trust what parents say because when I do as parents recommend I see results. The mainstream medical community has no interest in trying anything that has not been handed down to them from mission control in a very long memo. What I mean by this is that, for example, I read the most recent medical journal put out by Pediatric Health Alliance to it's doctors, on the explosion in autism and what to do about it. Mostly it said to screen for it a lot more. But it does not recommend any treatments at all. A parent has to go online and ask other parents about that. Anyway, so I have not tried any anti fungals on A.J. yet. Parent's swear by this, but it was only 3 months ago that we got a stool sample done for Avery to see if there was yeast in it, and there wasn't any. So it seems reasonable to not use a yeast medication if there is no yeast in her poop right? But apparently not. Apparently it is more complicated than that. There are different strains of yeast (Candida) that do not show up on the lab tests they do on her stool.
The parents on the website I post on say that kids with autism are plagued by candida and it needs to be resolved. They say that there is a yeast "die off" period when the kid freaks out for a couple of weeks before getting much better. I have read that sugar feeds yeast. So my poor little one gets very minimal amounts of sugar. As a result, when she does get sugar she acts like a maniac. It is interesting though. If I give A.J. sugar she freaks out, if I give "O" sugar I see no change. It seems like what autism does is make everything she ingests, affect her whole body, and her actions and mood and comfort level. That is why you will see parents of children with autism, micromanage their child's diet. And parents who do not have to deal with it, don't understand or even believe it. The immune defficiency or, over sensitive to environmental toxins and even certain food theory is not "proven' just talked about.
So, this morning I took A.J. to the doctor for ringworm. She has had the fungus on her arm for a while and it appears to be spreading a bit. I asked her doctor for Diflucan and the doctor said you don't give Diflucan for ringworm. I can just hear her telling the story now, "I had a parent ask for Diflucan for ringworm ha ha ah!" I explained that I thought that the fungus issue was an ongoing problem. Also I just wanted a reason for her to prescribe it to Avery. I knew the Dr. wouldn't just because A.J. has autism. I don't think that is unreasonable, but if the dr. is not an autism specialist and is not educated on the new findings then she just won't know. Pediatrician's are simply bound by their text books, medical "alliances" and never venture out any further.
Dr Mom note:
I have discovered that grapefruit seed extract oil (more so than tea tree oil) is helping to get rid of the ringworm really well. I read about it online and I am switching from the Lotrimin and using this, since the ringworm builds up resistance after a while to each anti fungal.
Subscribe to:
Posts (Atom)