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.