First I want to write that the morning after the high fever of the previous evening (see below blog), AJ had a very mild one, it was 99 under her arm, and she was acting, well, incredible. I have blogged a few times before that when she has a fever that it is like she doesn't even have autism and the next morning, December 15th, it happened again. I wish I could bottle that fever. There is something there. It is something huge that is the key to unlocking, at least her autism and finding a way to help her. Her processing time was immediate. We had the best conversation and I knew the whole time I should get up and get my video camera but I couldn't bare to leave her as I knew that as the fever wore off, that so would the incredible immediate processing time. So I used all that time to talk to her and soaked it all in and enjoyed it.

On to other things. Right now my little one in my belly is wiggling around like crazy. I am almost 31 weeks along. My face is starting to get puffy, my hands were swollen this morning for the first time in a long time (I have been very careful about salt so I seem to be spared the major swelling so far.) It is starting to be hard to walk around since I am short which makes my belly stick way out. But I still am pain-free. I am trying not to eat like a piggy which I did not bother with my first two pregnancies. Although tonight I did eat a quarter of an apple pie, but I swear that isn't usual!!!

So Claire's wedding was last weekend. What a drama week. I won't bore you with the details but I will tell you that yesterday she lost her wedding band and today her engagement ring broke, and when my mom took it to the jewelry store to get it fixed, the little broken off flower got lost somehow. The worst part about that is that there were 3 flowers, 3 sisters, and now there are only 2 flowers. The irony, symbolism and whatever else is so cruel and exhausting and miserable. The rings are supposed to represent so much so it is kind of shocking to loose them and to loose broken, significant parts of them. Then she had to fly out this afternoon. Claire was sick for the last half of her visit and she is very much the baby when she is sick. Now she and her hubby are on on the plane on the way back to war torn Israel and once again, I am just trying not to freak out or stress as I read the news about the attacks on Gaza Strip and I can't believe she is going back there to live. My parent's cried at the airport. I didn't. I can't wait for her to come back, to move to Brooklyn again and get her life together and gain some weight and stand up straight. My whole family is still so terribly torn by my older sister's passing that I find it alarming to see the mess it has created, still. And I know it messes with me all the time, some times more than others. It gets tiresome trying to constantly cope, rather than just live. But I am also having a blast in a way...just living. In fact, as of midnight (It is just after midnight) it is my wedding anniversary. It has been 7 years!! The best part about it is that I am so happy with my husband. I love him more than ever, he has been amazing through all of this wedding stuff. It is so hard to feel so lucky though because you have so much to loose when you love someone this much. I don't think I could take much more tragedy honestly. I would probably end up in a mental institution. I think about that sometimes, what I would do if something so horrible happened that I couldn't deal with it... and I thought that maybe I would join the peace corps or something.

Anyway, this blog is getting off track and starting to sound a bit weird. This has just been an emotional week. I do want to add though that on Claire's wedding day, I had an amazing time with AJ getting her ready and dressed up as a flower girl. She let me wash her hair and blow dry it and curl it and put it in little clips with baby's breath flowers. She had one of those long white dresses on and looked like an angel. She was so excited about it.

I will write tomorrow about the toy brains exploding on her dress quite soon before it was time for her to walk out there.

OK, bye for now.
me.

up late

Well first I have to say that the soy experiment continues. My little one has been clear as a bell ever since I got very strict about not having even a tiny bit of it in her diet. Now of course I am kicking myself for not doing it sooner. She probably has always had this major allergy to it and I never figured it out until now.
Anyway, I am up late because she has a high fever and I can't sleep when she is sick like this. Last night she was throwing up all night and DH took care of that since I was very wary of catching a stomach bug while pregnant. She was OK today but said she had a sore throat, and tonight her fever spiked to 102.6 under her arm. So I gave her ibuprofin and just now when I checked on her it was still over 101. She has pulled the covers up over her so I pulled them off and I think she is cooling down. I don't mind a fever, just not one that seems to be too high. She has her school Christmas concert tomorrow and I bought her the cutest outfit for it. I was so excited about going and she was about singing in it. I guess we will see how she is though. I am keeping her out of school and I will have to call to see if there is anything I need to know that she would have brought home from school. sigh.

She always has done remarkably well when she had a fever, but it is less obvious now that I have her off soy and she isn't in a cloud at all recently.

I have been putting away the baby's clothes, the one that I had given to my older sister and that she had in a chest of drawers all ready for her baby. Now it is weird to be putting them in the closet for my little one, knowing they were never worn by her baby. It feels wrong. But what am I supposed to do? I don't know.

me.

Salt and Swelling.........Diet and Ireland (yes, Ireland)..........and Yahoo's cancer article (I swear they do all relate in an eclectic sort of way

Salt and Swelling.........Diet and Ireland (yes, Ireland)..........and Yahoo's cancer article (I swear they do all relate in an eclectic sort of way :)

So one of the autism theories I have read about is the swelling of the brain as a baby/toddler. I think that swelling is an issue with some immunity difficiancy disorders too (I'll check my source on this one before I elaborate.) AJ's head size was way off the charts as a toddler. Now that I am pregnant I keep reading about how eating salty stuff will make you swell. I have been staying away from chips and salt in general, and also I have been trying to keep AJ"s salt intake to a minimum and I think that helps her too.

I think what it boils down to is that we just have to simply give our autism kids healthy, natural food that is low in sugar, salt and is preservative-free (as well as the GFCFSF.) It is kind of like we have to go back to the stone age and give them anything that we ate as hunter/gatherers!!..before we knew how to grind wheat into flower, farm cows or create soy products. Did you know that so many people in Ireland are gluten intolerant that they offer a choice of gluten free crackers for communion in the Catholic Churches there. The theory is the very fast diet switch from mostly potatoes to mostly bread, didn't sit well with much of the population.


I just read an interesting article on Yahoo about how to prevent cancer and it basically said to eat your fresh fruit and veggies. We are all just saying the same things over and over, but not connecting them, and certainly not doing them...me personally included, but I'm going to try.

Claire's Wedding

My younger sister, Claire, is my best friend on the planet and is pretty much the person I have been closest to my whole life. After our older sister passed, I realize all the time now that when I talk about my past that Claire is in everything I have ever done...ever...and that I really would have to erase my mind of the past if anything happened to her too if I were to keep going. Anyway, enough of that. I actually wanted to write about her wedding that is coming up on December 20th.

She is living in Israel with her man. They met in NY and dated for a year. Then she moved to Israel with him and then they got engaged. They weren't allowed to marry there because she wasn't "jewish enough" and they eloped to Cyprus a couple of months ago. My parents went to the elopement, and so did his parents. I felt awful that I didn't go but I had been dealing with some mild but clinical anxiety (which is completely gone now) and didn't want to deal with a huge trip away from the kids and flying when I was trying to do this pregnancy medication-free.

Soo...I was pretty sad that I was missing her wedding. It didn't seem right, in fact it felt completely wrong. So we are putting together a wedding for them here in town and it is going to be so cool.

Right now I am looking for a dress and I am hoping to find an empire waist dress that is not maternity but won't ride up too much in the front. I have to look fast because I only have a week and a half, but I need to wait until Friday, DH's payday...don't ask.
AJ is excited about her dress. She sees me editing wedding videos all the time and has been asking for months to be a flower girl and wear a "princess dress." So I have been looking on ebay and found a very fruffy one that she is very excited about. When I asked if she wanted this one she said, "Yes, and I now I need something to put in my hair"
So we will have to make her a crown of flowers.

I hope it isn't freezing cold. I hope it is like today, 80 degrees!! And I hope it doesn't rain.
I will write more tomorrow.
me.

What causes regressive autism, and my response to the St. Pete Times article about vaccines and atusim

Subject: My response to the St. Pete Times' front page article about vaccines, and how this relates (or not) to autism ...



Begin forwarded message:


Date: November 24, 2008 10:26:54 PM EST
To: greene@sptimes.com
Subject: In response to your article about vaccines...from an autism mom.

Hi Lisa,
I enjoyed your thorough and fair article about vaccines and as an autism mom I wanted to offer up an explanation of how vaccines truly figure into autism.

The most current view is that vaccines do not cause autism. I believe, after researching for the past 4 years, that autism is triggered by numerous environmental factors, in children who are genetically predisposed. Vaccines are a part of the trigger, not a single cause.

One example of how to explain how vaccines factor into austims is the, "Princess Diana Tragedy Example." It states that you can say, "If only she was wearing her seat belt, if only she weren't being chased by the media, if only the driver had not been drinking"....if only one of these factors had been different, her fate may have been different.

With autism I could say, "If only I had not eaten a can of tuna fish a week during my pregnancy, if only I had not let her have 5 vaccines in one day, if only I had declined the flu vaccine with thimerasol in it, if only I had not microwaved her formula in plastic bottles, then maybe the genetic predisposition would not have been triggered and she would not have had lost skills at age 2, then regressed more and more with every vaccine."

This theory is based on the fact that our kids who are genetically predisposed to autism are more sensitive to environmental progress/toxins. They can't rid the body of toxins like most of us can and it ends up building up in their system and turning off switches in their brain (that hopefully can be turned on again some day as research continues.)

You can say a similar thing for many diseases and disorders. For example, breast cancer is believed to be triggered by carcinogens in those genetically predisposed. I think that environmental toxins are out of hand and we just turn a blind eye to them because it is so terribly inconvenient to do otherwise. We like eating fast food packed with preservatives and we like microwaving our food in inexpensive plastic. We can't bother with being worried about BPA's or MSG or bothering with whatever the new "scare tactic" is. Not only is it inconvenient to change our lifestyle habits, but how do we decipher which "scare tactic" has merit and which is a passing media trend that has simply received over-exposure.

A part of being an autism mom is trying to decipher just this. We have to pull out what we learned in statistics class in college and from biology about studies and credibility. Suddenly instead of just mom's we have to be scientists, researchers, nurses, doctors for our kids and it is overwhelming. Then we deal with "professionals" not listening to what we have discovered and what we are saying because we don't have the medical degree to back it up. We are a new generation of Lorenzo's Oil parents, which I have to say, sucks.

But...my little girl with autism has improved so much that after a diagnosis of severe autism only two years ago, she is now in a typical kindergarten at a highly regarded private school, where she is one of the best students in her class. My studies and theories put into practice have worked on my child. Now I watch as it unfolds and hope that small treatments such as diet modifications; feeding her fresh organic veggies, fruit and meat, and also taking gluten, casein and soy out of her diet, eventually become recommended by pediatricians. We give my daughter vitamins, probiotics, baths in epsom salts and B12 shots. None of this stuff is proven or standard, but it has worked for her, especially the B12.

So to get back to vaccines...when my daughter's pediatrician told me that it is rare to have severe side effects from vaccines, that they don't cause autism, that there is not enough thimerasol in the flu vaccine to be of concern, I trusted him. I know that he was not knowingly giving me wrong information. But my child was showing some mild signs of autism at that point and I should have been advised to wait on the vaccines until her immune system was stronger and to stay away from thimerasol and any environmental toxins...from food preservatives to bug spray.


A Short Rant:
Unfortunately today it still is not standard for pediatricians to advise the treatment of keeping preservatives and toxins out of autism children's systems while working on detoxifying and strengthening their immune systems. This theory is often dismissed as "not proven." For example, many pediatricians and even specialists will not say to concerned parents, 'I don't know if it the GFCF diet works or not because I am not a parent or doctor who has tried it." Instead the doctor will say, "These treatments are not proven," which implies some sort of knowledge on their part, where there actually is none. Parents end up getting cheated out of precious early intervention treatment time until they finally look it up and find the information themselves on the internet or through networking with other autism parents.

As an autism mom, like many others out there, I do not believe that vaccines simply cause autism. I do believe that if a child is genetically predisposed to it, that vaccines contribute greatly to triggering or worsening autism symptoms in overloaded, under-protected little systems.

The Soy Experiment Continues

We are still soy-free and she is still clear of fog. It hasn't helped her tantrums or explosions, she still gets those. But she has not stumbled around in a daze since that last day after I gave her the gfcf waffles with soy in them and she was a zombie. I don't use margerine anymore because it doesn't exist without soy in it. I use organic vegetable shortening on her toast. We have bee using a lot more olive oil too because she really likes it and it is good for her. She seems to not have had any awful sensory issues recently, just normal levels, no awful sudden spikes for no reason I can figure out.

I have been slacking on her b12 shots. She was going through this awful back lash to it, screaming while we held her down to give her the shot. So it has been about a week since her last one and I'm feeling a bit guilty about it. I'm wondering if that will help her language and maybe her ability to not freak out over transitioning if I get the shots going again.

She has done a few different ticks over the past few weeks but seems to have settled on a cough that comes mostly at night. Someone suggested that it is a calming tool for herself. I hope that is right and it is not that she is uncomfortable and kept up by her cough.

I really hope that being strict about her soy is the key to keeping the fog clear. I love that she hasn't been stumbling around recently. She has been having little conversations with O over the past few days. In the car home from her school today she asked him about 3 questions about his day and his class at school.

I have been printing out worksheets so that she can work on her handwriting. She writes her Y's backwards in her name all the time and they don't seem to be working on correcting that at school. So we have been practicing at home and I have some gfcfsf chocolate chips that she gets after completing her worksheets. I hang them up on the wall too and switch them out each day. After she finally gets her name right and neat and tidy then we will start working on her last name with includes a backwards S. She writes lots of her numbers backwards too so that is behind her S's.

I have been getting O to do the worksheets too. He is very advanced in everything except handwriting, which I mean, he is only 3 so it doesn't matter. But it will be nice to practice so that he can start to write all of his good ideas down. I know he has the brain for it, I'm just not sure about the hand coordination since he is so young.

2 weeks until my younger sister's wedding. I have so much to do. AJ is doing her strange cough over and over and over.
me.

Happy Christmas Memory Made Today

AJ was so excited and such a big help decorating the Christmas tree this evening. She hung ornaments carefully all over the tree. This is the first year that I didn't have to convince her to hang at least one or two ornaments. She dug into the boxes and found the ones she like and hung them very happily. She was so into it, like with her online games, it was really fun to see. O was really into it too and it was fun to all three be decorating the tree. I put on some Raffi Christmas music and that kind of completed it. DH was at band practice so he missed out, but we had all gone earlier to pick out the tree together which was really fun too...no major melt downs and it wasn't freezing cold.

AJ was a bit explosive this afternoon and I had to put her in time out for hitting me with O's jacket because I interfered with her online video she was watching on Noggin.com, sigh, but one thing that I have been noticing lately, is that since I taught her to make fake crying noises when she does something that she should cry about...such as fall and hurt herself or if she gets in trouble, I have noticed real tears starting to form. It is so weird to have to teach your little girl to cry. Most people are saying "don't cry" and I say, "you are doing such a good job crying." I have to be careful not to say, "don't cry, don't be sad" because she thinks I am really telling her to stop and doesn't realize I am just showing emotion.

Tonight at bedtime O fell asleep by himself no problem and I rubbed AJ's feet until she fell asleep, since DH is worried about giving her melatonin every night.

me.

Let me start by saying that removing soy completely from AJ's diet has worked wonders. We used to give her food with just a little bit of soy in it, like margerine and some GFCF waffles. But I have since discovered then when she has no soy at all, she is "with us" but when she does have soy, like in the GFCF waffles, she is in lala land. I hope that we have found the secret to keeping her vocal and attentive. I will post again and see if this is consistent for more than two weeks.

So I am 27 weeks pregnant today. That is about how far along my older sister was when she came to visit me a few weeks before she passed at 32 weeks preg.

I have been dealing with something really hard core. Her husband told me a couple of days ago that they tried to save the baby. That he was taken from the scene, to the hospital, but he didn't make it. I had always thought that he died with her, in her belly, but hearing this threw me back into terrible grief again. After kind of figuring out how to separate her from the accident, I suddenly had to learn how to separate the baby from the accident and I am still dealing with it, still reeling from how horrible it is.

People say that they believe in angels. Where was my sister's angel? and why wasn't she her baby's angel? I have to figure out how to love the world anyway and the weird thing is, is that I do. I love that she had time with us, more than I hate what happened to her. I know that horrible things happen to people all the time but we always hope that we are exempt and that this stuff happens to other people...that we are the star of the story and they are all the characters that we read about.

But now I know that I could be gone tomorrow, that my kids could loose me or vice versa and I have to learn to not worry about it or I simply have no life. So I have kind of figured out how to go on and be happy anyway. Right now the baby in my belly is kicking away. It brings me so much joy but I am also shell shocked knowing exactly what my sister felt the last few weeks of her life. I also feel like there is this little life inside of me. There is this little personality and I when I feel my belly I can make out a head or a butt or a little foot. With the first two pregnancies it seemed like I had aliens moving around in my belly. This time it feels different. I know that there is a real little baby in there, my little one just growing and chilling out and getting bigger. He/she can even breath on his/her own if born right now. And these thoughts slam me back to my sister's baby. I don't know how long he was alive, if he even made it to the hospital. I think about how someone held him in their arms and it is a stunning thought. I kind of want to know who it was and what color the baby's eyes and hair were. But at the same time I want to leave it be and not ripple the waters more than they are, because no matter how much I find out, the outcome will be the same. I don't know how much more I want in my brain to make stories out of. I don't need any more answers that create more questions than before the answer was given...if that makes any sense.

DH said that he doesn't want me to grieve. He wants me to send "happy hormones" to the baby. And then I feel how unfair it is that I get this chance at being pregnant and having another baby while she was robbed of life and motherhood. I feel like I am stumbling through this in a way, thinking that at any second it could be taken away from me like it was her. Since she was older, i always followed in her footsteps...but not this, not this.

DH plays video games while I tell him about what I have been thinking and how I have been grieving and I cry and he plays video games until I tell him to turn it off and give me a hug. And he does, when I tell him to. I think that I have developed this kind of tolerance of him having no idea how to deal with this, because AJ needs to be told basic social things and I guess she got it from her daddy. So I don't get mad at him for playing video games while I cry about my sister. I just tell him what he can do to help me and when he willingly does it I am amazed at how he is so like AJ. His eye contact with strangers is terrible too. In fact, I can never ask him to get our waiter or waitress in restaurants because he won't look at their faces ever so he can't recognize them to ask them for something.

So a few other things that have slammed me back into grief mode is that I saw a fatal accident yesterday. I just went home and went to bed for 4 hours and made DH come home and watch the kids while I just waited for the shock to go away. Also my sister's husband brought me her sewing stuff. She has these amazing sewing machines, a Surger (which I never knew what one was until he brought it today...even though she had told me all about it before.) And another fancy machine I have no idea how to use. He brought tubs of remarkably organized thread and tubs of fabrics she had collected...some from little stores in her town and some from England when she went there with her husband last year. So now it is all piled in our living room until I figure out where to put it. I was thinking about putting it under my bed but I don't want to have weird dreams. Her husband also brought me her amazing mountain bike that she got when she was in college. The thing is, she would never have let me touch this stuff and now here it is in my shed and living room. My younger sister and my mom are both wonderful at sewing and neither of them want the machines. They can't deal with it. I feel closer to her when I look at her stuff and look at the fabrics and see the little sketches she drew of purses and a dress that she was going to make. I think that maybe I will try to make it in honor of her. My younger sister said she couldn't deal with that and that I can and that I have dealt with it head on right from the beginning. She said she could never had made a photo montage for the funeral like I did. I told her that making that video photo montage of her life was the hardest thing I have ever done in my life and I did it because mom asked me to and I obviously would have done anything for mom at that point...anything. DH helped me with it too when I would break down. My younger sister said that she just doesn't let any of it seep up. I don't really know what that means.

Speaking of my younger sister, she is having her wedding here in three weeks. I will write more about that next time .
me.