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.

Why I Chose this OBGYN

So my new OBGYN...here goes:

After finding out that I needed to get a scan by Nov 21st to remain at my current OBGYN's practice, I wasn't sure what to do. I eventually, one morning decided that I would just get the ultrasound and this way I could make sure that the baby was Ok and what sex it was too so we could prepare more easily and be able to get the kids excited about it. AJ is sure we are having a girl so it would be nice to be able to give her a solid answer she could get used to. I told DH this when I woke up in the mornign and he said he thought I was making the right decision and he was glad I was going to be able to stay with the midwives that I liked and not have to worry about this anymore.

But when I picked up the phone to make the phone call I couldn't do it. I sat there with the phone in my hand and thought about how I was being pressured into care that was not right for me because they were worried about liability, not because they thought I was wrong about not having the scan. It seemed to me that if they couldn't adjust their care plan for me, that I needed to go somewhere that could. I thought about the articles and the studies I had read. I couldn't get it out of my head that the book, "The Out Of Synch Child" was on the same shelf as "What to Expect When You Are Expecting" at Books a Million. And I couldn't get out of my head that email I got from babycenter.com saying that at 20 weeks is when the "sensory organs are all developing." I also couldn't get out of my head that I knew back when AJ was a baby that there was a question about getting her those flu shots with thimerasol in them. But I let the doctor talk me into thinking I was doing the right thing, and then I watched my baby regress so much so quickly that it was really scary.

So while holding the phone I called my younger sister instead of Northside. She said that either way she knew I would make the right decision. Hm... that didn't help. So I called my dad at his work and told him the story from beginning to end, and he advised me to go to the birth center.

There was one more place I could call. My friend, Suzanne had told me about it. She had birthed her first child there. But it was different now. When she was there there were 3 midwives and now there was only one. The hospital they were affiliated with was closing in a year, so it seemed like they were phasing things out. They used to have a place where a person could deliver at their practice rather than the hospital, but they don't do that anymore. I had tried calling them a week ago and left a message for the midwife to call me but she never called me back. So I decided to try again, just so I would know all of my options before making the final decision. I called and asked where they were located and then drove me and O there (since this was after his preschool got out)

When I got to the practice I was not impressed. It was in a grimy small strip mall next to a convenient store with bars on the window. It had a small old sign out front and I thought about just leaving but then decided to at least check it out so I would know all of my options before making a decision. O and I went inside and it was a bit grimy in the waiting room. I asked if I could speak to the midwife if she wasn't too busy and they brought me back to a type of conference room with a clock on the wall that was stopped, empty shelves, and old large desk and a musty smell in the air. When Lilly the midwife came in I told her about what was going on at Northside Hospital and she said that she thought I should just get the ultrasound. When I started to go into why I didn't want one she cut me off and said that she didn't care if I had the ultrasound or not, that she and the dr there would not require me to get it and that it wasn't an issue. She said that if I wanted her to care for me that it would be a pleasure to see someone who had planned to have the baby, who wanted to have the baby and who was interested in natural birth. I got the impression she was used to dealing with a whole different set of moms to be than who were going to Northside Midwives. She was really nice but I wasn't feeling like I wanted to be at a practice where the mom's weren't excited about having their babies and where it was not clean and warm and well, inviting at all.
So when I was walking out I asked about the hospital she was affiliated with. General Hospital was across the street from them and also quite close to my house. She said that if I wanted to have a look at the labor and delivery floor that someone would probably show me around.

So my next and final stop was labor and delivery at General Hospital. O and I went to the elevators that took so long to open that I almost left. I kept thinking that if I was in labor this would not be cool right now. But O loves elevators and he would have had a fit if we almost got to ride on one but then left. So we stuck it out and eventually made it to the 3rd floor. When the doors opened I couldn't believe how cute the lobby was. We walked out into a beautiful, clean, cute and inviting room. Then I looked through the door there and saw the nurse desk and hallways of labor and delivery. I looked for a way to be buzzed in and didn't see one, so I tried the door and was pretty much stunned that it opened and that it wasn't kept locked and under tight security like at Northside and where I had birthed O and AJ. I didn't like that at all. But when I walked in there the nurses looked up and smiled and when I looked around it was so sweet and warm and clean with cute pictures on the wall. The hallways were carpeted and not concrete. It just looked like a really really nice place to have a baby. It looked nicer, cleaner and more inviting than Northside.
One of the nurses showed me around and we went and looked at an open delivery room. It was in pristine condition and she picked up a wireless monitor and said that each room had one so I could walk around and move while I was laboring and not be confined to a bed.

So I decided that it would be nice to have the baby here because it was close to my house, so I could do most of the laboring at home, and because I wouldn't have to get an ultrasound...but I would be in a hospital if anything went wrong and they had a nic unit there also. I would be able to keep the baby in my room too. The only problem is that I would have to have round the clock family keeping an eye on my baby since I would be paranoid about the lack of security...not because it is in a bad area or anything, just because when I am a new mom I am intense about keeping the baby in family's hands and sight at all times. I guess I have a mistrust of society that kicks in hardcore for those first couple of days after my little one is born. It is kind of a shame really. It would be so much easier to be trusting and be able to sleep and send the baby to the nursery and such with no worries. But its not going to happen. It was going to be weird to have my prenatal care at a place that I wasn't too excited about, but I figured if the midwife is good (they raved about her at the hospital) that it would be OK.

So there is my long post about my experience with trying to find a place to have the baby. I am 25 weeks preg tomorrow. The little one is dong flips in my belly quite often. Exciting stuff...I'm so glad I made a decision and that I don't have to think about this anymore.

Let me end by saying that the main midwife at Northside told me that regarding my concern with the scans, that I was "probably way ahead of everyone on this one." If she is right, then perhaps this was all worth it.

me.

Major Bad Parent Mistake #1 (many more to come I'm sure)

I'll write about the new OBGYN tomorrow. Today I'm going to write about O. Yesterday we went to the mall and I asked O to pick out a present for his school friend, Elle's party that was today. He picked out a $10 gift of two matchbox cars from the movie, "Cars." He was so proud of his choice that I just bought them and thought that I liked cars as a little girl so it is OK to give them as a present to a little girl.
But today while he was at preschool and I was back at the mall (getting them winter jackets) I saw some cute little dolls at the Childrens' Place that were only $10 and looked a lot more fun to give to her at the party that afternon than two matchbox cars. So I bought one, wrapped it up and gave it to O to give to his friend. I didn't mention to him that it was not the cars, but a doll. I was a little embarrassed at that moment at the gender labels I was solidifying. I didn't think he would ever know or be affected by it though because these days no one ever opens their gifts at their party. I figured it would be no big deal. I was right. We left before she opened them.

Then when we got home after a long day, he walked in the front door and there were the match box cars by the front door. I forgot to put them away. He picked them up and showed them to me and shouted, "We forgot the present!!!!!"
Instead of just telling him that I got her a doll instead I said, "There were cars in there. I bought two of them so you could have one and she could have one."
He looked a bit confused. I said, 'You can have these at Christmas time. I will put them away for now.
He said, 'I don't want them at Christmas, I want them at fall!!"
He very rarely gets spontaneous gifts, and I felt so guilty for my dumb lie that I just said OK and gave him the cars, pulling them out of the packaging and giving them to him.
So then at bed time he was holding the cars and he started crying. I asked him what was wrong and he said that there was nothing in the box that we gave Elle today. I said that there was a present in the box and I wouldn't give her an empty box.
He said, "NO, I checked, there was nothing in there!!"
The box was sealed well, there was no way he could have checked, but he is such a smart kid that he probably wondered why the box was so light, as this was a stuffed doll, not the heavy little cars. I decided to level with him and said, "I bought her a doll and put it in the box."
Now he was utterly confused and I was in a pickle. He said that he wanted to put the cars back in the packaging we had just taken them out of and give them to Elle tomorrow. He kept saying that the present box we gave her was empty.

His sophistication of his indignant protests was stunning. My heart was breaking as he cried because of how my ballooning white lies and bad decisions were affecting him.

So tomorrow I will go to Sears and get another packet of cars, the same one and bring it to his preschool so that he can give it to Elle. I won't really be making up for lying to him. I won't be fixing the confusion of the stories changing and possibly loosing his trust in me. But it is one small thing I can do to try and make up for it. I might even keep him out of preschool and take him with me to Sears and he can help me wrap it. I don't know. I don't want to make too big of a deal out of it but I need to follow through with something solid that makes sense to him.

So that was my bad parent vent. I know I will make many more mistakes but I have learned that even though O is 3, he is a very very smart little person and that I must always be honest with him, even if it inconvenient. Because the alternative is unfair and just well, pretty much awful.
me.

It is 6:30am and I have been up since 4. AJ came in our room and got in bed with us then didn't get back to sleep for two hours. Now she is fast asleep. Not me. DH got up and went to sleep in her bed so we would have room and because she wiggles for hours so no one sleeps. Tomorrow, well, this morning I am going to talk to him about what we can do to get her back in her bed since when the baby comes I can't be up all night with both of them. At least O has been sleeping through the night these past few days. AJ seems to wake up in wee hours of the morning when we give her melatonin.

Today I am going to call her pediatrician and tell her about what I wrote in my previous blog. We shall see what she says.

So I am 24 weeks preg now. The baby is doing summersaults constantly. I love that feeling! I got one ultrasound at 10 weeks and he/she looked great. Then they scheduled me for a 3D ultrasound at 20 weeks and I remembered something weird that my sister told me about her 20 week ultrasound. She said it was funny because it looked like the baby was running away from the scanner thingy the whole time. I thought that was kind of weird. So I looked up ultra sounds and autism and just like everything else, there is someone who says there is a connection. So I looked some more to try and have my research be even and not just take the word of a youtuber. I found a study by Yale done in 1996 that shows that ultrasounds cause displaced brain cell placement in mice. They went on to say why this applied to human babies too. You can find the article on the Autism Speaks website if you search under ultrasound.

So I thought to myself, well, no biggie, since I already had an ultrasound and things looked good, I just wont' get the 20 week one so I won't have to worry or think about it anymore. Then I went in for my check up and when I told my midwife, Jane, that I cancelled my ultrasound and that I decided not to have one, she kind of freaked out. She said that the doctors who own the practice would not be OK with that. She said that for liability reasons I had to get the ultrasound done or they wouldn't see me anymore.
I left feeling kind of shocked. I thought that I should just get the scan and forget about it. But at the same time I was annoyed that they were choosing liability issues over the individual care of the patient. I totally understand why they would, but I didn't really want to be a part of it.

So...I went to the birth center in town and spoke with the midwives there. I loved it there and it is only minutes from my house. But they don't offer the option of an epidural which is a bit scary but I thought would be the right option for me. I decided to go to the birth center. Then that night, I woke up in a panick, remembering when I got an epidural with O and telling myself that if I was dumb enough to have a third, to not try and do it without an epidural. I remember burning that into my brain, that I never wanted to feel that strength of a 9cm contraction ever again in my whole life.

I talked to DH about it and he said he didn't want me at the birth center. He said he wanted me and the baby at a hospital so if anything went wrong we would have immediate care. So now that left me in this weird position of do I just get the scan and stay at Northside Hospital? Or do I suck it up and go to the birth center?

My friend suggested that I go and talk to the doctor in charge at Northside. So I made the appt and DH and I went in to see her. She said that she agreed with me, that all of my reasons and arguments and points were valid and true. BUT she still couldn't risk the liability because in the rare chance that there was something wrong with the baby, I could sue her and say that she didn't councel me properly on why I needed it done.

for 3 weeks , between 21 and 24 weeks preg I had no baby care practice to go to. That was kind of stressful to be that far along and out in limbo. Then a friend told me about another place. This other place is the one that I chose. I will blog about that tomorrow :)
me.

Is she having seizures?

So today we I piked A up from school and me, A and O went to the University Therapy building for A's usual Wednesday OT and Social Skills class. We have a break between OT and Social Skills and so the kids play in the waiting room with the other kids and it is like a mad house in there. I talk to the other moms and it is very interesting hearing how they deal with their children's disabilities and gifts. When the SLP came out and called A to come in for her class, as usual she was spaced out and it took calling her a name a few times to get her attention and then she went with her therapist to do her little class.
The weird part...the part I am leading up to is one of the moms I talk to came up to me and sat down and she looked pretty nervous. I really like this mom. She is an amazing person who homeschools her kids and her typical daughter is the sweetest little girl ever and is so kind to the children there who have disabilities and is never rude. Her brother goes there for therapy. He has CP and seizures. Well, this mom said to me, "I really hope I don't offend you but I think that I need to share this with you."
That kind of scared me because I tend to say some dumb things sometimes and wondered if she was going to call me out on something that I said that was controversial or odd. But I decided to keep an open mind and not get too worried.
I told her that it was OK and to let me know what was up.
She told me that when A was being called by her therapist to come with her and how A just was standing there staring out of the side of her eyes at nothing, then seemed startled out of it by the therapist calling her name, as if she were waking up out of something...she said that this was exactly what her son, Nathan did when he was having his absence seizures. She said that Nathan is on medication for it and is doing really amazingly well. She said that the seizures cause regression, and could have been the cause of A's sudden regression at age 2 and that they can be treated so that she stops spacing out all the time.
I told this mom that A had an EEG before and there were no seizures. she said that absence seizures can be once every 4 hours and that the half hour study could have simply missed them. She said that A needs a 24 hours study.
I asked for the name of her doctor and he is 3 hours from our town. But I am going to call our pediatrician tomorrow and talk to her about it and see what she says.
Wish me luck. I hope this is truly something treatable.
me.

pregnancy, grief, joy, confusion, resolution

I am 12-13 weeks now and reeling from how pregnant I feel, so early on in my pregnancy. My belly is like a round hard ball and I wake up at night from the discomfort, and this isn't supposed to be happening yet right?!! Oh well, whatev.
I am trying to balance discomfort, joy and grief all in one. When I wake up at night I have to try and figure out what I am waking up about. Is it because my belly is bloated and feels like a balloon? Or is it because I am fiercely grieving over my sister and her baby. Tonight I think it is about her baby as I think about mine.
DH's band played last night. We left the kids with my parents, they went to sleep at their house, and I got to go and hang out and see the band. John dedicated the last song to his partner and to me too and he said, "and baby makes 3, wait, no, 5."
It was nice to get out and see some bands play and sit in a booth outside with fans blowing so it felt good, not too warm. I could see into the little gift shop as they played, and all the hanging mobiles were glinting in the lights and moving around from the wind coming from all the fans. All the colors and the lights reflecting from the mirrored ones, were quite beautiful. I would listen to DH on the pedal steel and watch the mobiles and was surprised at how good I felt. There was no anxiety, no worries about the kids or baby. I kept a check on the grief and even thought of how when I see something beautiful now, that I wonder if she is there in the beauty somehow. Like a few months after she passed away I saw an amazing sunset behind some branches of trees and a breeze. It was pretty in the way that is surprising, like it it sitting there in the normal world but surpassing normality, and you think of the word magical, and now when that comes up I think of my sister being a part of that. If she is not part of the tangible world, she must be a part of the magical one, where things kind of have their own life beyond ours.
I don't know.
I'm supposed to go to sleep now on this uncomfortable bed. Wish me luck. It is 3:06am.
me.

I have bee a little worried about #3 also having autism. Since there is the genetic factor there is a large possibility. Before I thought that if I just don't vaccinate we won't trigger anything and then when the child's immune system is stronger, perhaps we can vaccinate, say by...age 4? Or we would think about it again by then.
But some kids are born with autism.

So this pregnancy is not filled with future plans and hopes and dreams. It is getting through the nausea and it is being calm and not taking medication and eating healthy organic foods when I can eat. It is not as fun to swear off McDonalds fish sandwiches and brownies like I scarfed down my first pregnancy. It is not as fun to be scared of having my bladder completely destroyed and not being able to sit because of hemeroids. I'm scared that I am not in good enough shape to get through labor and what if they have to do a C section or what if I don't make it. I know this sounds crazy and I don't really think that too much or anything. But I think with loosing my sister while she was pregnant and with the autism gene that we obviously could pass on...this is kind of a more solum pregnancy. I don't want a shower (not that I would get one with #3 anyway). But I do look at websites and blogs that have natural baby stuff like toys that are wooden and fabric and a bit different from the ones you buy at Target.

We closed on our new house on Friday. It is exciting but the changes are coming like paint balls.
me.

We went to OT today and I find myself being surprised that AJ has delays in motor planning, for example, she has a hard time drawing diagonal lines. I find myself thinking that it is just baffling that she would have a hard time with this. She is so smart and I see where she has problems when she is tired and makes funny squinting faces and stumbles around. You can tell she has autism then. She does use route phrases and speaks as though reciting lines from a movie. But these phrasees make sense and are in context and I am used to them. The way she speaks is "cute" and sometimes her memorized sentences sound very smart. So when I see a little handwriting test and see how far behind she is with some very seemingly obvious things, I am surprised and it makes me a bit worried. I think about her amazing drawings, yet, she is years behind in drawing a diagonal line. It doesn't make much sense since she draws houses with diagonal roofs on them. I don't know. So we are going to do, "handwriting without tears" and she started some worksheets today. She had a hard time doing the letters in the right order or things, such as, when she writes letters, usually it is like she is drawing them as a picture and she does the sequencing out of order and odly, but the letter ends up looking how it is supposed to, but more interesting in my opinion. So with this program she is learning the right sequencing and not just creating her own alphabet letters. That will help her in Kindergarten.
me.

Although this pregnancy was not planned or in the plans, there is still something wonderful about being pregnant again. And now that I know how to do it I am excited at the changes happening, and this time, I completely understand them...well, not completely. I am not sick yet and not horribly tired, which is weird because I was exhausted early on with the first two and already sick with A.J. by now. I am sure that by 8 weeks I will be puking. In fact, that is how I am viewing this pregnancy. It is going to be rough, like my other two. It is going to be hard and painful and tiresome. But I am going to tough it out. This time I will not be surprised, I hope. I am just going to take things as they come and work through them.

I have difficult babies too, and once again, I will take things as they come. I am totally fine with this...a little scared but I have to smile when I think of the little life in my belly. Although yesterday she wanted this baby to be a girl, today A.J. says it is a boy and his name is Adan. I say, what if it is a girl an she says, "No, it is a boy, it is Adan." So she may have just named our 6 week old embryo.

I am excited to have our brood in our new house.

 I have never owned a house and so I am very much looking forwards to nesting. I am going to do lots of gardening and I am planning all sorts of projects for the back yard. Our new house is so little that we will most likely be spending lots of time in the large front and back yards. I am looking forwards to being able to nurse this baby with only DH and the kids around. I will probably be shirtless for the first couple of weeks. We lived with my parents through the first two pregnancies and babies. That was wonderful for us and the help was huge, and so appreciated that it would take many posts to truly express it. But this time, I will enjoy the privacy and I will enjoy not having stairs to have to transport children and babies up and down through out the day. We will just have our tiny little space of 850 square feet to navigate around. It sounds small for a family of 5, but we are not very tall people and we don't have much stuff. We ordered some beautiful appliances for our small kitchen that has been completely redone. And today I just ordered a book: The Creative Family - How to Encourage Imagination and Nurture Family Connections

I also ordered some BPA-free homemade popsicle holders and some soy crayon rocks.

I need some ideas for the summer that don't take much money. Occasionally, "creative" also means low cost because you do a lot of the work yourself. So, we will see if this book, "The Creative Family" pays for itself. I need some creative storage ideas and I read a review that said this book has some.

So I need to get back to my editing that I have been avoiding although this wedding is pretty fun to edit overall. The first dance comes complete with one of those sudden transitions from slow sappy country (insert record scrape noise here) to grinding boodie rap. Many of us internet junkies have seen these types of dances on youtube, so many younger guests attending this wedding were not surprised. But the older guests were, and their  expressions in the background are priceless. 

So tonight I am happy that I have a little one growing in my belly. I have no expectations, no false hopes and I do understand that there are no guarantees. So I will take it as it comes and enjoy it and yes, I will be heartbroken if things go wrong. So, here goes the next 8 months




.

me.

#3 on the way

So I am 6 weeks pregnant. We used a condom with spermacide, but I guess you have to use it right from the beginning because we are living proof that if you wait a little first, you're gonna get pregnant! I've been a little stunned. The first two were not planned but they were in the plans and it was actually perfect timing. But we were done and I had my head wrapped around that. We were ready for the vacations to begin, maybe camping soon. We were ready for both kids to be in school so I could work during the day more and we could make some more money. But here I am with number 3 growing rapidly in there as I type. Of course I am happy. It is like nature makes you happy. What else are you going to be? Of course I am worried about autism and I am doing things differently this time. I am not going to eat a ton of chocolate for one...no tuna fish at all. I am eating organic healthy food but I will allow the occasional pizza binge. Today, to get myself excited or to drive home the reality, I bought two glass baby bottles online and a stainless steel sippy cup. And I think that I am somehow going to try and not have an epidural. I don't know. I won't commit to that because I got to 9 cm with Owen before I got the epidural and I can still feel the pain. But I think I am going to try.

Also a couple of weeks before my due date and after the baby is born I am not going to eat or consume anything with casein in it as I have read lots of articles that say it helps to calm colic, to cut out dairy. After having one child with autism and the other with first, dysphasia as an infant and asthma now. I am going to do my best to keep the environmental toxins as far away as I can. I also will not be doing any shots until this one is 4 years old. I hope it helps keep my new little one protected. It is so strange because you get the shots to protect your children, and it is so weird that I will not be getting the shots...to protect my children. I have learned that doctors don't know anything and the people who taught the doctors, don't know anything. What else is a doctor going to do though than tell you confidently that what they have learned is fact. How can you be a skeptical doctor? Well, I guess it is possible, in fact we have one for AJ.

So I am early on in the pregnancy but I am giving my little clump of multiplying cells lots of good energy and thoughts and early love. I have been lucky enough that my anxiety has not been popping up and I hope it stays that way. I am wondering if it going to be a boy or girl. AJ wants a sister and Owen wants a brother. I don't care, either way it will be amazing. I hope things work out. I hope I hope and I hope and I don't worry because worry doesn't help. But I am terrified in the most calm way possible. Hm,
me.

No Autism Today

Yesterday AJ had a tummy bug. She vomited about 10 times but then she recovered overnight and this morning was amazing. She played with Owen all morning, only coming up for air to tattle on him a few times, once for suggesting they play baseball in the house. It was such a remarkable morning that I called Cathy Z from CARD and asked her to come over and observe AJ. She came over with her video camera and said that she noticed right from walking in the door that AJ's "processing time" was immediate and we did not have the usual, "Look its Cathy, say hi to Cathy...can you say hi to Cathy, AJ?" Instead AJ ran up and waved and said, "Hi Cathy!" She answered questions and smiled and when I talked to her she gave me some sly little smiles like when she was a baby and gave me good eye contact. Her eye contact wasn't that great with Cathy but she was totally "with us" in a way that was really exciting. She was more alert in the morning before Cathy came over, but she was still doing well for Cathy. I think that Cathy got some good stuff on tape. It is weird how the heightened awareness and "normal" energy seems to kind of fade away as the bug goes away. AJ does very well now with the b12 shots, but she is always on a completely different, amazing level after a stomach bug. It is so great to know that she is in there. I think all our kids are "in there" and that if this were studied we would be so close to getting to meet them eye to eye.

Cathy and I talked for a while about why on earth a stomach bug and a fever could be so good for her brain. We talked about how maybe it was the heightened immune system was leaving alone attacking itself and was concentrating on attacking the bug. Whatever it is, it is highly under-studied, under-reported and if it was studied seriously and hugely... I think that it could open the doors to treatment in an incredible way. All AJ has had to drink all day is gatorade and she did not eat anything all day until this evening when she had two rice cakes. She is still doing well. I hear her out there watching a movie with her grandpa yelling about how there is ice in the video and how Owen is wrong that it is not a rock it is an iceberg.I have capitalized on lots of hugs and kisses today and lots of smiles. It fills up my heart, which is especially wonderful when this is such a difficult week as it is one year tomorrow since my sister and her baby were killed in a car accident. She would have been so proud of AJ. I wish I could be telling her all about this. Anyway, I feel like she is also somehow a part of AJ's progress. I know that sounds crazy but I just feel it in my heart.

me.

Back to Pacifier

After I took away the pacifier AJ started making some weird faces with her mouth and nose. It is pretty much a tick. So I gave her back her paci at night and the tick is gone. Does this mean she has torrets too? or is that an autism thing? I don't even feel like looking it up.
me.

Mother's Day Grief and a Stint in the ER

So I booked a wedding a while ago that we will film in Philadelphia. They are going to fly us out there and pay for a hotel for 2 nights. We are leaving in two weeks. I knew that we would be flying out the day after my sister's birthday but I didn't realize that the pain leading up to that day would be so shocking. How am I going to film a wedding two days after her birthday? They better not play Dancing Queen at the reception.

The sister I"m talking about is my older sister. The sister that is I don't know where she is now because she died in a car accident and I don't understand or have a fixed idea about where you go after you die, after she died, or her baby, because she was 7 months pregnant. Today is mothers day. We just acted like everything was normal today. But through it all, even though I didn't cry or see my mom cry, today was the most painful most awful most...wrong mothers day because it was supposed to be her first. And I could write about autism, I could write about being a mom to a little one with autism, but my sister didn't get to see what it was like to be a mom at all, none of the joy or the pain. She is just gone and I don't know where she is or perhaps there is a slim chance she is holding her baby somewhere in some kind of heaven. I don't know. Maybe it will make more sense someday but not right now.

So happy mothers day to me to my mom and to my sister wherever you are. I miss you.

I read her card from last mothers day and it was amazing and she thanked me for being an amazing mom and a wonderful sister. Her handwriting is so bubbly. I guess I will look at it every year as long as I am alive I suppose.

That is my autism blog. Sorry it is not more about autism. Perhaps I could end the blog like this. The sudden and unwanted understanding of the fragility of life, puts things into perspective. How lucky we are to be able to love and hold our children. And yes, I do only think it is luck, because how could there possibly be a reason that my loyal, intelligent and amazing sister who was so excited to be a mom...how could there be a reason for her life to be taken so violently? There isn't one. There isn't one.
me.


So right after I finished writing that last night I head O coughing a croupy cough and ended up having to call an ambulance because he couldn't breathe. It was really really scary.

Today though, everything is better. They took him in and fixed him up at the hospital and now my baby is just fine. I keep getting slammed from one emotional roller coaster to the next. But I sit here just fine too somehow. I guess this is just life.
me.

short one

We are done with the pacifier. When I read about plastic and BPA's and all of that fun stuff I took away the pacifier. She was fine for the first week but was asking for it a bit this weekend. I have just rubbed her legs at night to help her go to sleep since she doesn't have the pacifier to help her. It seems to be working fine and I hope to be able to phase it out after a while. I think this will be better for her teeth.
me.

update...joy....wheaties...b12 shots

I got an email from Autism Speaks...all excited about the new "puzzle piece pretzel" they are selling in stores now. What struck me immediately as odd, it that it is not gluten free. And you can make a pretzel gluten free. This is to raise money and awareness for autism. I think what it does is completely confuse the GFCF issue. Autism Speaks even has a 100 day kit, a kit that it designed to help parents the first 100 days after the diagnoses and it talks about the GFCF diet. But their new pretzel is not gluten free. WTF?

I get gluten free pretzels for A.J. at Mother Earth. They taste exactly like real pretzels. Anyway, I think it is just stupid to make a food that is supposed to benefit autism, but a kid with autism shouldn't eat it. Whoever thought that one up must have eaten their Wheaties for breakfast and probably shouldn't have...perhaps having a foggy day??

So I have talked to two new mom's this week. Just two. One I talked to at a bake sale for Owen's preschool and she told me that her daughter was diagnosed two days ago as being on the spectrum. Then today I popped in on my parents old next door neighbor and she told me their two year old is on the spectrum. Two moms...one week, both with autism stories directly relating to their immediate family. Does everyone's kids have autism now...or is it just that all the really smart kids, who also got their shots, have autism now? I need to set up a, "What I wish I would have done right after the diagnoses, post" because they both wanted more advice than I had time to give.


I just want to do a quick catch up with the methyl b12 shots. Much to my excitement, A.J. is definitely a responder. We have no fog these days. If I forget to give her the shot, she goes back in a fog. If I remember, (which now I always do) we have lots of words, conversation and happiness for A.J. and for me. The downer is she wakes up now when I give her the shots and she screams. Then she says it was only a little owie but she is pissed at me anyway. It is partly a control thing, and partly a, "I don't want to be stuck in the but with a needle, thing." I put numbing cream on her skin first and wait 20 minutes, but it doesn't seem to help much. It doesn't seem to numb my fingers at all.

So hopefully I guess she/we will just get used to the shots but it sucks that something that helps her, is also traumatic for her, and for me to do. But when she asked me if it was going to hurt I said, "yes, a little." So when I cut her fingernails later and she asked me if it was going to hurt and I said, "no." She trusted me to cut her fingernails.

She still gets lethargic in the afternoon sometimes and the taurine seems to help a bit with that, as do afternoon snacks and a short rest in her bed with a pacifier. Yes I did write pacifier, and if she wants one her whole life, that is fine with me. She only has it at home in bed and it helps her to self-regulate. She doesn't have tantrums, she calms her self by lying in bed for a few minutes, then gets up, puts her "paci" on her pillow and runs off to play. Her pacifier is no longer a baby calming device, it is a tool that helps my daughter to self-regulate. Everyone tries to give me advice on how to get rid of it, but I'm not going to. I don't care if society frowns upon it and no would have known anyway if I didn't write it in this post.

I am so excited about A.J.'s improvements and I need to share the the road to this improvement with the world. I wish I would have done all of this stuff when she was 2 and maybe she would not have regressed so much. Finally we are moving forwards instead of backwards and I see glimpses of a life for her that I imagined before the autism got bad and I suddenly was "redirected to Hollond" (see the poem.)

It is strange to be given something back that at times I was convicned, had been taken away from us. Now I think, yeah, she probably will get married and have kids and a job. Maybe, maybe. It doesn't seem impossible anymore, which is kind of weird. I am nervous to let myself get comfortable with that because I got comfortable with that when she was born and it was taken away from us. But here it is, creeping back in. "Normalcy."
I have never craved normalcy before. I always thought normal was boring. But if normal means freedom, self-sufficiency and happiness, than I want some of that for A.J.

Mabye this will all get taken away next week. But for now, I will watch her and let myself be filled with joy, just a little bit.

me.

Still Trying to Figure It out

Now I know why mom's are always terrified of the autism diagnosis at first. We don't want our kids to be labeled and/or judged. Here is a letter i wrote to Brentley:

Dear _______________,

I have decided to enroll Avery in Brentley and I want to explain why. First let me tell you that A.J. loves school and she loves learning. I have worked very hard as a stay at home mom, to ensure that she is always in a loving and nurturing environment. She is in an environment right now where she is adored by her classmates and her teachers. As she is moving into kindergarten next year I needed to make sure that she will once again be in a wonderful nurturing, learning environment.

Bob, when we first spoke and you took me around the classrooms I listened quietly and carefully to everything you had to say. I was impressed when you told me that you don’t label your kids…and that some of them have learning disabilities and that these same children have gifts…and that the individualized approach to learning helped them reach their potential.

A.J. has to work hard on her fine and gross motor skills. She is guarded about expressing herself until she is completely comfortable in a situation. But academically she is advanced and has a photographic memory. She has an above average IQ and socially she is very sweet, quietly thoughtful, intuitive and well liked. I want to make sure that she is not judged in any way, because she is coming in from an ESE program. In her ESE program were impressed by Ms. Scott and how she was able to connect with the children and install an excitement and respect for learning. It has been a great experience for A.J..

Now I want A.J. to start fresh, without the stigma of a label. Any classes or therapy she does is done in the private sector. In school, I want her to feel like she fits in and can and will do what her friends do. She is physically and mentally able to be just another little girl in kindergarten. This is what I want for her. We don’t need IEP’s, we need a great school, teachers who are passionate about their craft and a place where as a mom I can be active and volunteer and be a part of her school experience. We need to be comfortable that Avery is completely embraced, welcomed and appreciated.

I think that not only does A.J. have the ability to learn, she has the ability to teach. She has a remarkable aura to her that is calming and happy. I feel like she will bring a lot to the table. A good school and wonderful teachers will quickly understand what an asset she is and what a positive presence she brings to a learning environment.

Thank you,



So that is the letter. I don't know yet if I am going to send her there. Today when I visited the school again, Bob got all prickly and cold when he started saying that they have turned away other children who have needed a more clinical environment. I wanted to wring his neck, as if he were suggesting that A.J. may need to be put in a cold grey concrete room with a straight jacket. I can't stand that attitude.
If we send her there it is because it has a good reputation for teaching, because it won't matter if we move...she won't have to switch schools because of zoning, and because we could never afford to send her there if she couldn't get a scholarship for having a disability. Maybe if she goes there for 5 years, she will be completely "integrated" and shed the diagnoses???? Ahhh, dreams. Hopefully I won't have to spend much time with the director as I am disgusted with his attitude over ese kids. Am I setting myself up for a fall?
me.

Trying to find kinder"garden"

Two weeks ago, AJ was drawing on a notepad with flowers lightly printed on the paper. I said, "Oh! are you drawing a beautiful Garden?"

She said, "No, I'm drawing kinder"garden" because kinder"garden" is beautiful!

Wow, what pressure...to find her a beautiful kindergarten...here is the journey...


We want her to stay at the school she is in now...Oakwood, where she participates in the ese pre-K program. We have applied twice for first, a choice seat (denied) then a zoning exemption which is only for 1 year and you have to reapply each year (denied). Now I am appealing the denials but I realize I need to also explore my other options.I want her to stay at Oakwood because there is a multi-age class right next to her pre=K clasroom. The teacher is excellent and if A.J. were to be in that class she would have the same teacher for 3 years and be in the same environment. She does much better when she is not faced by change...which is pretty standard for kids on the spectrum. If we are denied again... the school we are zoned right down the street is an "A" school, but so is the crap elementary school I went to. I am afraid she will get lost in a large overcrowded classroom of overwhelming kids. I want A.J. to be in a calm environment where she can learn and not be sad. Thats all I want. I guess that is a lot.

Soooo.....in the interest of exploring options should we be denied Oakwood, rather than just accepting the school down the street (who won't give me a tour.) I went to visit Brently school today. Let me tell you about Brently. I have heard about it around town, it is one of the best little private schools. BUT last summer I talked to the parents of a child, Neil, who was in A.J.' class and who is on the spectrum, (now he is in kindergarten). They said that Brently turned Neil away because he wasn't "independent enough". I was furious that they would turn him away. He is remarkably gifted, sweet and such a wonderful little boy. It was nothing short of scary to me that Brently would deem him not good enough for their school. I had actually called Brently for a tour right before this conversation with Niel's parents. When Oakwood called me to set up the tour, I told them that I had just heard that they don't take kids on the spectrum so thanks but no thanks and hung up on him. That was last summer.

Now here I am...taking the tour this morning and there were flowers all over the window to the kindergarten classroom making it look like a kinder"garden".
I know that I should boycott their school. But....but...I can't bare for A.J. to end up in a regular kindergarten class where she will get lost in the shuffle. If she ends up at the school down the street, then she will need an aid, maybe. I do and don't want her to have an aid. I want her to have one so that she can be helped. I don't want her to have an aid because I don't want her to feel like she is different from the kids and that she can't take care of herself. I was hoping that Brently would be a good alternative.

Brently will accept take A.J. in their school as she is so much improved these days. I think that at Brently she would be OK without an aid because the classroom environment was so calm and positive. But then again, I don't know if I can bare to send her to the school that turned away a smart and sweet boy on the spectrum. Neil needs an aid and doesn't communicate verbally. But I strongly feel like there should be a way to provide him an aid at this Brently. I think that private schools should be legally bound to provide the same help to kids with disabilities, that the public schools are legally bound to provide. It should not be legal to discriminate "privately" Tuition here is $5450 a year. They can get an aid.

Oh, what to do.
I did look into a Montessouri school but they were full. I wrote an email pretty much pleading with them to take A.J. and they didn't answer it. I will post the email below.

me.

Dear Bridgett,
I am writing to you because I have heard wonderful things about your school and I want to introduce my child to you. A.J. is 5 and is currently in an ESE pre-K class at Oakwood Elementary. This is her second year of pre-K there and she will be going into kindergarten in the fall. Because she has been there for two years I applied for, first a choice seat then a zoning exemption for her to say there. I was interested in the multi age class that is offered, but now that we have been denied twice we are looking at other options.

Our options are not bad. We are zoned for DK Langly, which I'm told is an excellent school and is about a 2 minute walk for us, but I have decided to apply for a McKay scholarship for A.J., and let me tell you why...


When A.J. was born she was amazing. She liked to look at pictures on the wall at 3 days old and strangers would tell me that I had a "remarkable baby" People would say that "She just looks so intelligent, you can see it in her eyes." Avery went on to know her letters, letter sounds and numbers by 14 months and would say them for people who would look at her in shock. A.J. had a photographic memory and from doing a United States puzzle a few times, memorized all of the states and some of their capitals. At age 2, she started to go into her own little world, as you have probably guessed, the world of autism. But through intense early intervention, she is now 5 and most people can not even tell she is on the spectrum at all. She has friends and her classmates yell, "A.J.'s here!" and run up to her when she walks in the door.

She is in the ESE class but did not qualify for it. When she took the aptitude test she scored as average and above average for her age level and I was flat out told she did not qualify for special ed. Since she did not qualify for services, I needed the autism diagnoses to get her the services, and so she was granted them. The therapy helped to "bring her out of her world and into ours." She is a very very smart little girl. The autism is very mild, she is lucky in that sense. The only "problem" the autism presents now is that it makes it hard for her to express herself easily. She still talks a lot and holds conversations and even makes eye contact. She understands completely, others feelings and facial expressions. But she will not yell or argue. She is passive and sometimes it takes a few moments for her to "process" a request before she fulfills it. This processing time takes a while because she has so much going on in her head. Sometimes it is like trying to get the attention of someone who is typing an email. You just have to wait for a sec. She does not required extra attention and does not need extra help.

I want Avery to be in a school with a small classroom size. I want her around children who are intelligent and kind like she is, and I want her to be able to fit in with her eccentricities. She loves to sing and play her keyboard. She draws elaborate pictures for hours and tells me wonderful stories when I ask her about them. Today at the park she drew pictures in the sand and exclaimed, "Look Mom, Angels are hiding in the sand!" Kiwi fruit are called "fireworks" and clouds are many different wonderful creatures and animals.

I wanted to try the multi age class at Oakwood, but now that we have been denied twice, and I will have to change schools, I realize that I don't want her to get lost in a huge classroom where she will not be noticed. She is such a good and smart little girl that she could just float about a class all day without being spoken to by a teacher and she wouldn't have a problem with it. I don't want her to go unnoticed or unchallenged. I think that A.J. would be a wonderful fit for Sun Montessori. I am working on the McKay scholarship and would be such a happy and grateful parent if you as a school would be able to have A.J. as one of your own and embrace her for who she is. Avery loves to learn, but she has a lot to teach also.

Thank you for taking the time to read this email.
Shena Hays, mom to Avery Jane Hays.

today

A.J. got a bunch of age appropriate quiz cards for her birthday and when we sat down to go through them, she knew the answers all of them. All of them. I don't realize until she does these little tests, just how wide her knowledge base is and how incredible her memory is. She is a brilliant little girl who can't get her words into sentences easily. Her eye contact has been really good recently and I get greedy when she is like this. I want more. I love having that connection with her.
me.

Two Incredible Days

These past two days mark the two most incredible days with Avery since before her regression, they also mark me completely flying off the handle for the first time in my life, and giving a really fun birthday party.

Let me start with Friday night. It was 1:00 am when I was awakened by the first elated "woo" coming from the screened-in front porch of my next door neighbor's house. I was dismayed. They are frequent partiers (about 3 or 4 all night parties a month at least) and I didn't feel like dealing with it tonight. The next hour was filled with more woo's and then thudding music through open windows. A.J. came into our room at about 2:00am and snuggled up with us and somehow fell asleep again. I didn't. I have never called the police on them before, but at 3 something I finally called the police to complain, and at 3:30 I heard them next door. They were all having a good laugh with the officer. Whatever. I was relieved when the music stopped and the yelling and laughing on the front porch seemed to quiet down. I fell asleep then, but was awakened again 10 minutes later when the music started again. I probably could have fallen asleep with only the music with the help of my noise maker, rainforest music, but it was the laughing and yelling and screaming and just loud loud talking, outside, that made it impossible to sleep. All I could think of was how much I had to do in the morning for the kid's birthday party. They had been so excited about it all week. I wanted it to be perfect and I had a huge list of things I had to race through in the morning to get everything ready for 3:00. But on no sleep, it was not going to be easy. I was worried that A.J. would wake up again so I called the police again. This time I said that I didn't know why the party wasn't stopped the last time I called. I guess it was 4 something when the police came out again. I heard the loud guy voice say, "Thank you Officer" After the police left nothing changed. They stayed outside talking loudly and laughing. But then I heard people leaving as they walked to their cars, yelling the ends of their stories to their friends on the front porch as they opened their car doors half way down the street.

I have to admit that by this time I was furious. I was so furious that I had indigestion (I'm such an old lady) and had to walk the floor to keep it at bay. All I could think of was, what kind of people simply ignored the police telling them that they were disturbing the neighbors and that they needed to keep it down.

I thought of when the police were called on me as a college student. I practiced my drums for about 5 hours that day with the windows open. Friends came in out out of the house to play with me, but then the police showed up and told me they had 6 complaints from the neighbors. There was a family that lived next door to me at the time and I suddenly realized I was probably disturbing them, not entertaining them. I was so embarrassed and stopped my drum session immediately and never played with the windows open again and never played for more than 45 minutes at a time...never after 10:00pm at night. So if I as a college student understood this, why couldn't these post college students, or, never college students next door not understand? How could they, after the police coming twice, just ignore the message to stop?

At 5:00am I couldn't take it anymore. I put on my husbands shorts and held them around my waist, I must have looked like a scarecrow, and walked outside to the front yard.
I screamed at them, "It is 5:00 in the morning!"
They kept talking loudly and didn't even look at me.
I screamed, "Listen to me, listen to me" at the top of my voice. They stopped talking and laughing and looked over at me in surprise. I screamed, "It is 5:00 in the morning. You have kept me and my family awake all f..cking night. So shut the f...k up and GO INSIDE. My kids are having a birthday party tomorrow and you have woken them up."(This probably wasn't very compelling at the time but it is what came out) Then I screamed, "Have some f..cking consideration!!!!!" and turned and walked inside.
When I got iside my indigestion, or gaul bladder or whatever the semi-frequent pain in my right shoulder blade is...was gone.
DH said from his pillow, "Well I think you got your point across."

I have to say that I was, and still am a little stunned at my tirade. I have never spoken to anyone like that. In fact, I have never even cussed at anyone before because I always thought that there are more creative words to express expectations and anger. But this, as I said, is what came out. Even now, I am not sure what I think about it. Oh, I have to say that they ignored me and stayed up and talked and laughed for another 20 minutes. I can only think that they must be used to yelling and cussing and so perhaps that didn't even phase them. Also, I think they were stoned, which I'm sure helped cut the shock of the next door neighbor suddenly unleashing a fury upon them. I am sure they only went to bed because the sun was coming up. I am still angry with them but have not figured out what to do next, be it going over and trying to have a real conversation or writing a letter of complaint to the police department and their landlord...or doing nothing. I don't know.

Anyway, the next day DH let me sleep in until 10:00am which was nice, I got 4 and a half hours of sleep. Then he and my dad watched the kids while mom and I first decorated the house to look like a fairy tale castle on the inside, then we raced around town buying 40 helium balloons and food for the party. Back at the house we had one hour to get dressed and make the food so we had friends make the sandwiches, cut into stars and put the chips in bowls and such.
An hour before the party the kids were wild with excitement. A.J. put on a princess dress and some silly silver shoes that her cousin gave her, which had dobs of pink feathers on them with fake gems glued on top of the fluff. She held a fairy wand and clomped around the house trying not to fall off her shoes. She was delighted and it was really funny. Guests started showing up early which was kind of annoying since I had been hoping to take a lightning shower. But, then everyone poured in and I had to turn on my organizing voice and get he first game going. We played, pass the parcel, which is a game I played as a child in England. There were 3 other children with autism at the party so it was not your usual game of pass the parcel. A.J. and her friends just pretty much wanted to hold onto the present once it was passed to them, rather than keep it going round the circle to the music till the music stopped. We managed it though and then I got them all outside for the pinyatta (sp????).

It just all seemed to go well. No one got smacked in the head with the pinyatta stick, no one cried. A,J. and Owen both loved having happy birthday sung to them and blowing out their candles. A.J. didn't even cover her ears which was amazing. My friend made the cakes as their gifts. They were the kid's favorite planets, "Jupiter and Saturn" and so they were balls of chocolate cake with ice cream inside. A.J.'s was GFCF with soy ice cream and Owen's was just plain old cake and ice cream. The cakes were a hit, and in the end, the kid's didn't want to leave when the party was over.

I have to say that the best part was that A.J. and Owen had so much fun, and I had fun and didn't get stressed out. A.J. was so happy and engaged and made tons of eye contact. She did go and get into bed a couple of times, but got out of bed five minutes later and came back to join the party. She put on 3 different costumes and paraded around in them.

I have to go to bed now. I will write about today and why it was so good...tomorrow.
I will quickly add though that I have to not stop probiotics if I want the b12 to do any good. Also, no more peanut butter. I am doing this...and she is doing awesome.
me.

bdays

It is confusing as to what makes A.J. fine some days and loopy on others. I am starting to think that I need to make sure she has her probiotics every day, and I need to not give her peanut butter even though she loves it. She is doing really well again, after having some really bad days. I find it very confusing. It seems so random but I know that it isn't.

We have the kid's birthday party tomorrow. Hm. The invitations turned out really well but I don't know if the party will live up to the invitations. I am wondering how many people will turn up without rsvp...ing. Last year a few kids did which caused a scramble for putting together party favor bags and such. So this year I have some extra and they can put their name on their bag when they walk in this time.

A little girl from our More Than Words, Hannon Program class will be there. She is A.J.'s age and from the videos and what her parent's say about her, she sounds very similar to A.J. I am very curious to meet her.

more later..
me.

update

So tonight I am dealing with waves of stabbing pain in my right shoulder blade. I think it is my gaul bladder, and if so, it isn't that big of a deal. I just have to ride out the 4 hour storm.

A.J. has been stimming more and although she is much more verbal, she seems to be kind of freaking out about it. She is "acting like a freakazoid" is how I explain it to DH. She sometimes makes funny noises, she screams more and has been tantrumming harder. The verbal stuff is still poring out of her mouth, but she wants her "paci" all the time and has to take frequent brakes to go to her bed to suck on her paci and chill for a few minutes before she goes an plays again (she is only allowed her pacifier in bed.)

We didn't notice the stimming or sensory frustration being so bad last week. I do realize though that it might be a bit much for her, to have a new awareness so maybe that in itself is sensory overload. I don't know. But if that is the case, it should get better after she gets used to the new awareness. We will see. We have a 3 month supply and will use it all. She has been flinching though the past couple of times I gave her the shot. 4 days ago she moved as I was pushing in the b12 and it ended up squirting all over. It is a red color so I thought it was blood for a couple of minutes and then when I looked at the paper towel I realized her blood isn't hot pink, and that must be the b12. Then last night she flinched again. I came back in twice to try and give her time to fall into a deeper sleep. But now that I am putting alchahol on the skin first, it wakes her up a bit. I finally did it even though she flinched and she still didn't wake up all the way. I am pretty squeemish about the whole thing and am looking forwards to being practiced enough for it comes easily.

My stabbing pain seems to be stopping. It hasn't happened in 7 minutes so maybe It has stopped. I hope so!!!

The kids birthdays are coming up. The party is next weekend.

me.

Methyl B12 shots

If A.J. isn't just having an amazingly great 2 weeks, and if it isn't some remarkable coincidence, then these shots are the best thing that have happened to us.

The first shot at the Dr.s office didn't seem to make a positive difference. She seemed to mouth objects a lot, like the side effects say.

But after the second shot, the one I gave her, she started to do new things. I'll try and list a few:

Call my attention and after I answer, she will either ask or tell me something. (she does this all day long now, as if she has discovered a new magic power.)

Laugh at the dinner table at something funny (she did this tonight when Owen did something silly)

Ask Grandma questions, "What are you doing Grandma?" Or greet Grandma when she comes in the door

Say bye to people when they say bye to her.

Today at her social skills class, after class they told me that difference between last week's eye contact with a ball throwing and catching game...and this weeks eye contact, was a huge improvement. That was the first thing the SLP said when she came out to get us to watch the last few minutes of class and she was excited about it. After the class I told the SLP that we just started the shots and she said she wanted me to bring her some more information about them.

She had just been running around talking all the time, like something has been unlocked in her. She is kind of a pain in the butt now, like her brother is. She requires answering all day long, when she used to only have and hold conversations and stories with her disney figures and toys. It is wonderful.

I feel like today I got to see glimpses of what maybe she would be like if she didn't have autism. Whether that is from the shots, or these new juice plus vitamins. I don't know. Maybe it is a coincidence. But whatever it is, I am really happy about it. Her fine and gross motar skills don't seem to have improved, but her confidence has, which I hope motivates her to perhaps try and pump on the swings.

me.

a library, a shirt and best of all...a hug

This morning I took "O" to the downtown library story hour. When we were there I thought about how we used to often go out in the mornings and I wondered why I stopped. I tried to think of the last time I took him out to something on a morning he does not have preschool, and I realized it was before my sister passed away. I suddenly realized that this was a direct effect of what happened and the impact it had on me and it was very odd. It was odd to have sort of proof that life changed, and that I stopped leaving the house in the morning. I didn't even realize that, until today, when I went out again.

We had a nice morning. We left story time early because "O" got bored and wiggly, then eventually loud. But then we went to visit DH who works downtown, and we saw his new office with a window overlooking main street. He is pretty excited about that. "O" told all of DH's coworkers that his favorite ride at Disney World was the race cars! When someone asked him what he wanted for his birthday next week he said "A big car."

The three of us went out for lunch. I was wearing the big baggy T-shirt I slept in under the sweater I threw on to take A.J. to school this morning. We were rushing so I didn't get dressed, I just pulled on jeans and a zip-up fleece and ran out of the door. I somehow thought it would be OK to go to the library like that. But then in the story hour room, there was a young mom who was completely "done up" and I looked at her in awe. She had a new shirt on with matching violet beads. Her hair was long and blonde, her roots were kept up and her hair freshly blow-dried and the ends curled. She had makeup on. She was with her 1-yr-old and a new baby. Later on in the class she nursed her baby with a cover up shawl over her. I was distracted simply wondering, how on earth did she manage to get ready this morning with two little ones...one of them only a couple of months old. My hair was nicely blow dried from last night thank goodness and my roots are freshly blonde, but like I said, I had on the shirt I SLEPT IN covered up by a fleece and no makeup. So by the time we went to see DH I was feeling a little like, I need to get it together. We all went for a sandwich nearby his office and I enjoyed hanging with my boys for a little while. DH walked "O" and me back to the car and now "O" is napping while I write. I still have this shirt on but do plan to change before we go to pick up A.J.

So today was good. I got out in the morning which hopefully has re-started the morning activities becoming a normal routine.

Let me end on this note...last night A.J. hugged me for the first time since before she had autism. She often kind of bumps into me when she wants a hug. But last night she opened up her arms, walked towards me and said, "oh mommmm" and put her arms around me and squeezed. B12 shots? I don't know. If things keep going like this though, for the next two months, I will be extatic. For now, I don't want to get my hopes up as it is possible that her sudden improvement is a coincidence. Perhaps because I am finally getting it together and life is starting to move again after grief froze everything except time. That could be making her improve. I don't know yet. She sometimes has 2 amazing weeks in a row for no reason. So this upswing will have to last longer than two weeks to have cred. Right now, I am just going to hope.

I'm off to put on a fresh shirt.

me.

Disney World Day...wow!!

We had an amazing day at Disney. What a difference it made to have the pass that made our rented stroller act as a wheelchair...so we got wheelchair access to the rides. On most rides there was no wait with wheel chair access so we went on tons of them. The kids really just wanted to play in Pooh's Playground the whole time. They would have been perfectly happy if we would hav stayed there all day. But A.J.'s favorite ride was the little roller coaster in the Mickey's House Land...or whatever that part it called. I wouldn't go on the roller coaster. I hate roller coasters and this one looked fast enough to be a problem. "O" doesn't like fast stuff either so we happily waited for A.J and DH to go and come back. The kids were so well behaved and so happy. The snacks and sandwiches I packed (my mom's GFCF bread) and the drinks were the perfect amount. The sun shone all day but it didn't get hotter than 75 degrees. I would have loved to have gone back to a hotel and gone back the next day. But it was still good to stay later. We got the kids a balloon each on the way out, not realized after promising them one that they were $10 each!! Anyway, we had a brilliant day, and I even did OK with the drive, I guess. It was better on the way back for some reason, even though it was in the dark and there was more traffic. I think I was just excited about a great day so the drive was fine. I think the best part about the day was when the kids, especially A.J. got to meet Tigger, Pooh and Darby. They are huge Pooh fans and they got to have hugs and get autographs in the little book we got them. Then when we walked away A.J. turned around and looked right at Daby and said, "Bye Darby."
I looked back and Darby had seen and waved bye to A.J. I think that perfect little moment is burned in my brain forever.

I gave A.J. her second B12 shot tonight. She stirred a bit but didn't wake up.
Goodnight.
:)
me.