First Grade and Stuff

I let AJ stay up with me tonight until 10:30 while DH was off feeding my parent's dog while they are in England....then Israel. I also let her eat peanut butter which I thought made her foggy in the past but she asked for it and looked at my eyes and said, "please mommy." I couldn't say no so we put some on a rice cake with a bit of honey. I guess I let her have it because, well, she was hungry and we didn't have anything else in the house, and she has been foggy lately anyway, even though we are following the diet strictly.

Her teacher switched AJ's desk again...to the front of the classroom this time, right next to her teacher's desk. I thought it was a good place for AJ to be but I winced at the fact that she was moved again. I know the kids notice when a "problem" child is moved around the classroom a few times in an effort to make things work a bit better. As I hung up AJ's backpack this morning as AJ put her lunch in her cubby, the girl who used to sit next to AJ told me with with glee that AJ had been moved away from her and sat up front now. That annoyed and worried me. Whatever. I don't know.

I have these forms that the autism society sent out a link for. Here is the link. So I printed them out to show to her teacher and see if she likes any of them. AJ has this tic. She coughs and when she is stressed she coughs about every 10 seconds. This drives people nuts. It doesn't bother me though since I feel very sorry for her. But her teacher this morning asked if there were any tricks to distract AJ from coughing as it disturbed the library visit a few days ago and they were going to that classroom again today. I said that no, there was nothing and that it would probably go away in a few days. AJ told me tonight that she has a bad cough and maybe she shouldn't go back to school until it goes away. sigh.

So we are reading the Wizard of Oz. AJ's teacher is reading it to her class so I downloaded it on my iPhone and have been reading it to the kids while the lights are off and they are in their beds. I wanted to do the same book so that AJ would be able to answer questions better if she was getting a double dose of it. Also I am going to order them some Wizard of Oz Halloween costumes tomorrow. I already have a lion costume that I borrowed for Emmy.

Emmy, by the way is doing amazingly well. She just brings joy like a ray of sunshine that doesn't stop glowing all around the house. She was 6-months-old on Sunday and she is already starting to sit up and rock forward, she even managed to do a tiny tiny bit of crawling forwards today. I was so excited. She is super cute and sweet and smiley. We haven't done any vaccines yet but I might follow the Dr. Sears vaccine schedule and take her in next week for the first one. I'm not doing HepB though since I just read today that it is linked to Autism. I knew one of these vaccines would be eventually and it kind of makes sense that it is the one they give the babies at 3 days old. I knew that seemed crazy when I was a brand new mom with her, but I decided to trust the experts, HA! Turns out that the only expert on your kid is yourself. You know, I write that but, you know, taking Owen to the hospital when he couldn't breathe was super-important, and my doctor did save my life when I had appendicitis. So it is hard to criticize when modern medicine saved my life and perhaps even Owen's. But if I blindly trust, well, look what happens.

I'm tired, I'm going to bed.

Goodnight,

me.

Wow so much has been going on

AJ started 1st grade and I was once again reminded that I have a little girl with autism. I guess over the summer I was able to kind of forget. At summer camp she happily played, made friends and had a nice time. She did the little work books that I made for them and things were pretty chill. We just all kind of hung out and gave Emmy lots of attention.

Now...she is going on a "work strike." Her new teacher is sending home pages and pages of homework which are worksheets that she didn't do in class. We spent 2.5 hours yesterday (with breaks) doing homework like writing spelling words and doing math problems that she can do in her sleep. So it has been a tough transition and she started her little cough/tic again. Her little cough comes back when she is stressed out. At speech today her speech teacher was worried about her being so stressed and said she wanted to figure out a way to "help us." I have a feeling that means a psychologist or something. I told her I will take any help I can get to keep my little one comfortable and happy.

me.

Obsessive Doll Arranging

So I decided there are worse things than a husband buying a keyboard for his beloved band. I decided I didn't feeling being mad so I just let it go.

AJ has been obsessing over her dolls. When we are out of the house she wants to get home because she "has work to do." She arranges them into piles and decides who are the brothers and sister and arranges them in to classes and grades. She didn't want to go to sleep tonight because she had "lots of work to do." I think I am going to do what I did before and allow her 6 or 10 dolls at a time because she seems to have about 50 little dolls again. Then she can switch them out each day for different ones. But she gets overwhelmed and obsessive over having so many. I think she will be happier without so much work to do. We will play it by ear, I don't want to take away what she loves, but I have a feeling there will be some relief involved if we cut it way down.

me

shingles and nursing

It is day 4 of this shingles business. My rash is looking pretty awful but I don't have open wounds. In fact I wonder if it is clearing up without getting revolting. I hope so. I don't know if that is possible though. The Tegaderm plastic cover things are working really well. Emmy is nursing on that side now (no more pumping except to get milk for AJ and Owen) and when Emmy nurses it actually stops the itch, which is really nice. The main bad thing is that if I forget and scratch it, it feels like someone is holding a match to my skin. So I have only forgotten twice. My right eye feels kind of funny. I hope that nothing weird goes wrong with that. It is itchy and kind of sore.

I'm writing this down because I didn't see any day by day accounts when I looked up shingles on the internet, so I wanted to document it a little bit incase anyone else had a mild case of it like me and wanted to see what it is like each day. The very best thing I am doing is resting. DH is coming home for lunch so I can sleep and that makes me feel so much better.

So since Owen hasn't had any dairy, his stuttering has stopped. One of my friends told me that there must be a major genetic allergy to dairy in my family. I told her I think it is totally weird that the allergy is neurological. The she said, "Hasn't your anxiety been much better?" She is right. It has. I am happier now than I have been in many many years. Maybe that is because I have my third baby and we have our own house. But I don't know. Maybe it is because my brain doesn't do well with dairy also? Hm, that seems like a stretch and I miss my pizza for sure.

OK, goodnight for now.

me.

shingles, autism, recession

I'm on day 3 of this shingles rash and I think I must be one of the lucky few that isn't that bothered by it. It is itchy but if I just leave it alone it is OK. If I forget and touch it, then it hurts. But I am being super careful to just ignore the itch. I don't have pain on the nerve where the rash runs so I guess I am very lucky not to have that. I am just really really really tired. I also have swollen glands and a sore throat but not too badly or anything.

So I have been using the plastic stuff, Tagederm, over the rash which helps because I can see where it is. I have started nursing Emmy on that side again since her mouth doesn't go near the rash, where as the pump piece got a bit too close to it and aggravated it a bit.

I have been pumping and giving the milk to AJ and Owen, disguised with chocolate rice milk so they are not totally grossed out. I am hoping the antibodies will help Owen not get it and might help Avery's autism?? Who knows. I was also thinking that I stopped nursing AJ around 14 or 16 months and if autism has anything to do with immune defficiency that breast milk can only help with that. I know she is 6 but its not like I'm putting her on my boob or anything. She doesn't even know she is getting it (she would be grossed out if I told her.) Both AJ and Owen are doing well today. Owen's stuttering seems to be much better too since I stopped giving him dairy a week or so ago. DH noticed that too. Of course, it could be a coincidence, but I don't think so.

So DH is at a meeting but is going to come home from work early so that I can sleep. He came home for a long lunch and I slept for an hour and a half. I might go lie down right now while the kids are watch a movie and Emmy is asleep.

Oh, I finally got a wedding video booking, which means we now have August and September's mortgage covered (if everyone sends their checks in). Maybe that is why I got shingles. I was so stressed about paying the mortgage because we weren't getting any bookings that it made me sick? I don't know.

me.

Oh Crap I've Got Shingles (I thought you had to be old)

So last night I was getting these weird hot flashes and I was having a bizarre waking dream that I was in the show, Merlin. (I love that show). I didn't realize I was sick, I just thought I was hot because Camelot was hot. But then I got up and turned the AC down, get this...so the kids wouldn't be too hot in Camelot (I was out of it). About a half hour later I felt fine, but not sleepy. At that point (about 1am by now) I felt something itchy on my breast and it felt like a bug bite or something but then I realized it was bigger than a bug bite. I got out of bed and went into the bathroom to check it out in the mirror. I was dismayed to see I had an awful rash on there...itchy red bumps. So for the rest of the nights feeding with Emmy I made sure the rash was covered with my T-shirt so her lips didn't touch the affected area.

This morning I felt fine but the rash looked so soft and lumpy and disturbing that I called my dermatologist and made an appointment for tomorrow morning at 8am. Then this afternoon I noticed that the rash had spread in a line all around my breast and I got very nervous about nursing Emmy so I called back my dermatolgist and begged them to see me today. They said they weren't a walk in clinic but when I told them I was worried about my 4 month old nursing near the rash, they fit me in this afternoon.

So when the doctor came in and I showed her the rash she backed away and hurried out of the room saying she was going to get another doctor. I thought that was kind of nerve wracking. Then she stuck her head in the room and said the other doctor was coming. She said that she was pregnant and if I had what she thought I had, that was very contageous and horrible for a pregnant woman. Then she left again and my heart was pounding out of my chest.

The next doctor came in and looked at it and said it was shingles.

I said, 'I thought only old people get shingles."

She said, "Anyone who had chicken pox as a child can get it. Doe it hurt?"

"no."

"You are very lucky that it doesn't hurt because it can be very painful."

"No it just itches a bit."

She prescribed me Valtrex and said it would be fine for nursing. I asked if Emmy could get the virus from my breast milk and get chicken pox. She said she would call my pediatrician and find out for sure. A half hour later they told me that the milk was not affected and this is what I needed to do:

1. bandage the blisters well

2. put plastic stuff over the bandages (Tegaderm)

3. pump on the affected breast making sure that no part of the rash touches the plastic of the pump. Pump while she is nursing on the other side.

4. feed her the milk that I pumped.

Now I am home and showered and bandaged up. My boob is wrapped in enough plastic to pack it in a box and ship it off somewhere. I did pump and Emmy finally took a bottle after I tried 2 different kinds. She likes the Born Free bottles and nipples and would only take it sitting on my lap and facing away from me, go figure.

I'm really tired and about to go to bed now. I decided not to take the Valtrex since I am nursing. I gave some of the breast milk that Emmy didn't drink and mixed it with AJ's favorite, chocolate rice milk and gave her a cup. I think that if autism has anything to do with viruses from shots still living in her system, maybe my antibodies fighting the shingles will help her. I'm going to give Owen some too although he isn't vaccinated for chicken pox and I might take him to get vaccinated tomorrow.

They also took a mole off to send away for a biopsy.

I'm off to bed now. I hope it isn't a bad idea not to take the Valtrex.

me.

The positive side of autism?

Today was our babysitter's last day. She was AJ's aid during the school year and she has been coming over in the afternoons, picking the kids up from summer camp and watching them 3 days a week while I edit my wedding videos on the computer. She is getting her special ed certification and she is a lovely 22 year old, brilliant teacher/friend. She is already married and building a house at age 22 which I find baffling but don't harp on.

Anyway...today, her last day, she told me that she read a book recently about the positive side of autism. Of course I have already forgotten the name of the book and the author (memory lapse due to either nursing or past large doses of Zoloft before my anxiety disorder magically disappeared by itself with my most recent pregnancy). Sorry, I digress. So she told me that in this book the author visited different autism families and asked them what was positive about autism and at first they were shocked or confused by the question. Then they answered with things like, now they look at the small achievements instead of expecting large ones.

I didn't think that seemed like such a positive thing although I have a feeling that there are probably some amazing positive stories in this book and I probably need to get it. So at that point of the conversation with our babysitter I was thinking about what I think about autism. I don't really think it is positive really but it is hard to sit on that conclusion since my little girl is so completely amazing and happens to have autism. I used to think that the autism made her amazing. Now I think that her being amazing has nothing to do with the autism and that the autism actually makes it difficult for her to express herself properly. I have another way of explaining this that goes a little below the service. Here is the disclaimer...if you are squeamish about grief, stop here.

Let me start with the phrase, "All Souls Are Equal." I first heard this phrase when I was doing a photo montage honoring an amazing psychiatrist who ran the Center For Autism and Related Disabilities, and had passed away. For the montage, his former employees and his freinds sent in little notes and blurbs and recordings of what they found special about him.
I had no idea what his friend was talking about when she made this whole recording about how she loved that he taught that all souls are equal. I had no idea what on earth she was talking about and I didn't really care because I just needed to get the photo montage done and looking good and it wasn't my job at that point to try and digest the meaning of peoples sentiments.

And I didn't think of it again until a couple of months after my sister's funeral. My sister had an open casket funeral and I remember when I went to look at her I was shocked that she wasn't in there. Her body was there looking alarmingly strange, but after my first glimpse I found myself looking frantically around the room and in the air around her for her soul. I have never understood what a soul was before but now I knew exactly what it was and I suddenly knew that her body there in the casket was a house for her soul. Now her body couldn't house her soul and her soul did not have a way to express itself and I wondered where it was now. Perhaps her soul is in heaven, whatever that may be. What I know more than ever is that in this lifetime I will never know where her soul is...although I have a feeling that it isn't that far away. In fact I remember feeling an odd pang of relief when I saw that she wasn't in there because she wasn't going to be buried. Her body was, but her soul, the part that I loved, was somewhere else and was not going into the ground.

So how does this relate to autism? Since I now realized that our bodies are simply a house for our soul, I also realized that our bodies fail us sometimes and make it more difficult for our souls to express themselves. When our bodies are no longer able to express our souls, our souls have to leave our bodies. So yes, all souls are equal even though not all bodies are equal. It was a life-changing moment the evening a month or so after my sister's funeral that I remembered that phrase and realized exactly what they were talking about.

I think that autism makes it a bit harder for AJ's soul to express herself. BUT there is something positive in this because she is able to express herself in many different ways that she would not have done without the autism. Maybe I am reaching here, and we do "reach" for the sake of love and happiness. But she is able to live in an amazing world that seems to me, from the outside, to be a beautiful one. I have learned a new level of patience that I didn't know existed in me. I remember reading that Madonna said that very same thing, now that she was a parent, yes, Madonna the singer. And I remember that weird tidbit of information because when I read it i was like, yes, me too, wow. I digress again. Sorry. So the positive side of autism. In conclusion, I don't think that autism is who my little girl is. I think it is a complicated maze that mixes up how she expresses herself. Sometimes it is wonderful and amazing, sometimes it is heartbreaking and down right frustrating for everyone. Do I think she would be even more amazing if her autism wasn't in the way? Well, yes I do. I think that autism "got" her because she is such a sensitive brilliant little girl. She was one of these babies who spoke at 10 months and was singing full songs at 12 months. She was a genius child, then autism struck and it was like the book, "Flowers For Algernon." Her skills just started to back track on themselves. At first, at 14 months she could work the CD player like a teenager, finding her favorite song, memorizing the number of it and then dancing to it. Then at age 2 she suddenly couldn't do it anymore and I remember both she and I were shocked and scared. That is when I called the pediatrician and the autism journey really began.

So did I answer this question OK? Is there a positive side to autism? I think my final answer is, yes. But I do reach for it, and I do hold on to it...cling on to it. What I DO know is that I have an incredible child who happens to have autism. That, my friends, I am certain about.

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.

#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.

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.

Disney World Tomorrow!!!

I have been trying to decide if the b12 seems to be helping so far. It seems like maybe it has. A.J. talked a lot today. She asked lots of questions and did many new things that she hasn't done before. She drew a picture and wanted to show it to me. She also tried to write the name of her doll on the paper and I have never seen her do that all by herself before.


Then later on at the table she said, "Mom" to get my attention, and she looked right at my face.
"Yes" I looked back at her.
She continued to look me square in the eye, "Can I have more strawberries please"
"Sure!"
I giggled because she has never done that, like that, before and I felt a bit giddy. That tiny exchange was so "normal."

This is our usual conversation:
She blurts out, weather I'm standing there or not, without looking at me,
"I want more strawberries"
"What's the magic word?"
"please"
"OK."

She has been stealing "O's" toys which is a bit annoying and today for the first time I told her to give the toy back to "O". When she wouldn't I had to say, "Do you want to sit in time out?"
I say that all the time to "O" but never to A.J. She turned around and threw the teddy bear down at his feet.
I said,"Now tell him you're sorry"
She said, "Sorry "O"."
She seemed pleased to be doing the same thing/ritual that her brother and I go through daily. Now she is in on the communication spiral galaxy. she made a lot of eye contact today. But she is still lethargic a bit and I want that to get better.

We are going to Disney World tomorrow for the first time (for the kids). I'm pretty nervous, more nervous about the 2 hr drive on the interstate than the park itself. (I am a little damaged from my sisters accident and working through it.) I packed up lunches and snacks and drinks.

We got that letter from CARD (Center for Autism and Related Disabilities) to take to guest services. The letter says that A.J. has autism and anything they can do to make our stay more comfortable would be appreciated. This is supposed to help us get passes so we don't have to wait in lines. DH said he felt a bit guilty about that and I told him that we, and the kids have to deal with the negative affects that autism has on our lives, all the time. We do not have to feel guilty about one positive thing being awarded to us. He agreed. I felt pretty emotional about it for some reason.

We are going to get up at 5:30 am and leave at 6:00 am and drive there. I keep thinking that I am forgetting something. I made a list and put it by the backpack. We are going to rent a stroller when we get there. My sister that passed away went to Disney World a couple of years ago with her husband and their friends with kids. There is a photograph of her sitting in the rented double stroller all crunched up, but she fit in it! This makes me think it is probably big enough for the kids to sleep in. I hope so. I can't get the picture out of my head though, and her big smile. It is a funny picture. I think I put it in the photo montage I made for her funeral. I wish I could be talking to her about our trip tomorrow.

I am hoping that this trip to Disney is going to be one big distraction. I wan to have fun and gain joy through the children's joy. I hope it isn't sensory overload. I hope they have an amazing time. We are going to skip "small world" since I remember wishing as a kid that song would just stop. We are going first to get hats with their names stitched on them...if they still do that. I haven't been in 20 years. Then I'm thinking we will start with the carousel and maybe Dumbo the flying elephants. We will have to work up to Peter Pan but I know they will love it if they are not scared.

It is late, I need to get some sleep...I'm too excited to sleep!
me.

first b12 shot

I was pretty nervous so I watched a couple of youtube videos about giving the shots. It looked pretty easy. I took the syringe out of the fridge 15 minutes before I gave it so that it wasn't cold going in. Then when I felt like I was ready and went and got my mom out of her room and asked if she wanted to come and watch. DH was asleep so it was me and mom. I held the syringe like I was shown on the video, like a dart, getting my index finger ready to push the b12 stuff in. A.J. had been asleep for about 45 minutes so I hoped she wouldn't wake up. I read to use the upper outer potion of the buttocks. So I just gave the shot and it was very easy. She didn't even stir.

I marked it on the calendar so I remember when to do the next one. I'm glad that mom watched and saw that it wasn't a big deal so she could do it if she needed to. My Dad came up this evening. He has a job interview tomorrow. If he gets the job he will be able to move here so that he and mom can be together and get a house. I am looking forward to them starting a life here in town, and having their own house.

I hope these shots help A.J. I hope they are the "magic bullet" but I have a feeling they probably aren't. She is such a great "responder" to the other treatments that parents have told me about so I hope hope hope hope that she is to this also. I want her to be happy.

me.

Friendship Put To The Test

Tonight I talked to my best friend, Taylor (since 7th grade) who's daughter, Maddie, is A.J.'s exact age. We were pregnant together with our girls. Taylor talked about how Maddie is all into soccer now and scores goals and she is really good. It was hard to listen without a little resentment, even though I am happy for them at the same time. It is very difficult to feel like that. It is sometimes easier to avoid even talking to her, to avoid the pain of hearing what A.J. would be doing if she didn't have autism. But I don't settle for that and keep working on one of my most important friendships, if not thee most important.

A.J. won't go after a soccer ball, when she does have it, if anyone tries to take it away from her she lets them have it then wanders off the field. When A.J. was 18 months, she would kick the ball around with D.H. all the time and she was an amazing little soccer player. I know that if she didn't have autism she would be so good at it...just a little star. She has the build for it. She isn't a skinny little thing like I was as a small child. She is muscular and solid like D.H. I find myself hoping that maybe....maybe, if I keep working on researching her treatments and the right nutrition, that maybe there is still a chance that she will aquire the confidence and skill it would take for her to be the star soccer player she was meant to be, before this thing...this autism crap robbed her of her gross motor skills. It robbed her of her fine motor skills too...she can barely cut paper. She is aware now of these difficulties she has and so I am going to try to help her. I want her to be able to ride a bike with us, like Maddie does all the time. I want that.

I don't think that Taylor knows that it is not OK to me that A.J. can't play soccer. I haven't come to terms with it and I haven't let go of the dream that she will be able to get "it" all back...the old A.J. before the autism regression. I don't want to lump A.J. into the autism catagory that does not recover. I want her to be one of these kids that gets better, that is able to ride a bike and run after a ball. So when Taylor puts A.J. in the category of other children she knows with autism, although it makes sense, I don't want to hear that Taylor has settled with A.J. being not as skilled as Maddie at soccer. A.J. is obviously not as skilled...but like I said...that is not OK with me and talking about it pretty much breaks my heart. It also breaks my heart that such an important friendship is so often put to the test because of this. Taylor is there for me and understands me in a way that no one else does. So sometimes I just can't beleive how she has no understanding of this whatsoever. I have tried to talk to her about it, but it is like she keeps forgetting or something. But on the other hand, she needs to be able to talk to me about her daughter. I know that. How do I ask her to leave out the soccer...and the reading...and cutting paper and wrapping Christmas presents by herself and the amazing and wonderful stuff Maddie does? How, as a best friend can I ask her not to share the triumphs of her little girl with me...that A.J. is so far away from doing? I don't. I don't and I just listen and I am sad and freaked out at how different our worlds are, and then I get over it. But sometimes I don't feel like being sad so I find myself calling her less often. But I miss her. Maybe I'll tell her.

me.