Thursday, March 31, 2011

Hold Off On The Added Attention Vitamin

They are all exploding in the kitchen when I buy them. I called the company who told me that the batch with the 2013 expiration date has a mixture where the sugars ferment and make it explode when you open it. She said the "new formula" should be ready in 2 weeks. I asked her to call me when it is ready. In the meantime, AJ has been taking MRM Attention Gels. She hates taking them because she has to swallow them whole. Sometimes she chews them a bit and swallows them quickly with a drink because they taste disgusting when chewed...poor little thing. But they seem to be keeping her in our that is good.

Saturday, March 19, 2011

Hello Again

It has been over a  year since my last post. I wanted to update and say that AJ is doing really well right now and I know why. Her liquid vitamin, "ADDED Attention" by, Burried Treasure, is like a miracle for her. I don't know about other kids on the spectrum but this is what she needs for sure. When she doesn't take it she is in a complete fog (one time we ran out and I couldn't get more for a month). After we give it to her for 3 days she gets a bit better...then after 2 weeks she is a new person. Her teachers can tell the difference too. We also are very good about giving her (and her siblings) "Rhino Gummy Calci-Bears with vitamin D. They are by "Nutrition Now."

It is huge for me to know what keeps AJ's head clear. Before we would have major ups and downs...some weeks were great and some were awful. Now I know that it must have been that some weeks she was randomly getting the nutrition she needed, and others, she wasn't.  When I am good about giving her the vitamins she is able to talk to friends and keep friends. She still is horrible about getting her homework done...but less horrible than when she isn't on the vitamins. She is just happier and listens more. She is on "Earth" as we joke, when is taking the vitamins.

We have changed her diet a bit. I still am good about keeping her diet free of, gluten, soy, preservatives and artificial color, cows milk. But after we realized the vitamins had so much to do with her improvement, we do now successfully cheat with some food that was previously off limits because of the gfcf diet...and this is how we do it:

 We have discovered that she can have cheese sometimes without it affecting her. This is great because the local "natural" pizza place makes an amazing gluten free pizza. This is AJ's favorite food and we have it every couple of weeks. Also now at Publix they have Annie's Gluten Free Pizza. Now I can keep something in my freezer that I can give to her when running out of time.

I still keep her far from cows milk. She is very happy with rice milk in her natural sweet rice flakes for breakfast. In face all my kids drink rice milk becuase my middle son is like a different kid on cows milk. When he drinks cows milk he asks for it all day long and is emotional and angry. When I take it away and give him rice milk, he is a great kid. I don't know why...I'm not a doctor or a scientist. But it is as clear as a bell with him. I don't keep cheese away from him but he doesn't seem to crave cheese like he does cows milk and I try not to serve it every day. We do put a bit of cheese on our rice pasta which makes the kids like it more though. So I have learned to use some stuff (cheese) that used to be on the "no" list. I have to be really tuned in to their needs and emotions. I am so happy now though because I have found a food/nutrition balance that works for them. Now I have happy kids even though they are not "typical" kids.  Emmy (my 2-year-old) is completely typical and she is fine with cows milk. But...I give her rice milk anyway. She gets gummy supplements and breast milk still...not she is not missing out on any nutrition.

And...we got a microwave. Our friend was giving away her brand new one because she replaced it with a super fancy one for ther new kitchen. Our microwave mostly just sits there but every couple of weeks I heat up some frozen peas for my 2-year-old. I still don't use it to cook whole meals. If pregnant people are not supposed to be around microwaves...I don't think that kids with autism should really be either.

So that is my update. Things are good.

Friday, October 16, 2009

Facebook is kind of Funny

When I look at my profile facebook page it looks like I have this super-interesting, fun life with tons of amazing friends. It is kind of a reminder of how lucky I am. But what is funny is that the truth lying beneath it is not so rosy. Like, I wrote how we went to Miami yesterday to get passports for the kids since we are going to England next week to attend my Grandmother's memorial service. Anyway, this all looks very interesting, but I don't mention of course how the drive was really scary for me because of my anxiety disorder (and I was the passenger not the driver.) I feel like many of my posts have underlying things in there that I don't mention and I wonder if this is the same for other people. When I look at my high school friend's profile pages, sometimes it looks like everyone has this amazing life, but I have to remember that the profile pages are what people choose for their books "cover."
My friends all do Facebook and when we get together we take lots of pictures and post them all. It is like a big advertizement for how cool we are or something when the opposite is true. We are are struggling and have problems, some of us serious problems, amongst of course, joy also and a strong bond of friendship. But the photos show us all smiling and hanging out and having a great time with the girls. They don't show that we talked about autism or my friend's daughter who is regressing because of her seisures. All people see when they look at my page is the smiles, the friends, the summary of each story that has so much more to it than what is posted.
I feel like I have been posting a lot of deaths recently. My cat/1st baby died two weeks ago and everyone comforted me with their 2 sentence words of sympathy. Then my Grandma died and I posted something about that and got more sympathy. It is just knid of weird really. So why do I post? I don't know. I suppose I want my friend's to know this stuff. It is like letting everyone know without having to email them and if my friend's want to know what is gong on it is very easy for them to check in on my profile page. The very weird part though is the people who I am "friends" with who I am really just aquaintences with. I wonder if they get tired of my "feeds" about my life. I guess they can easily not see my feeds anymore. I wonder how many people have done that.

Tuesday, September 29, 2009

Won't Do Classwork

Another day of school work strike. She came home with 5 worksheets to complete that she didn't do at school. After speech, we sat at the table and did school work for an hour or more. At one point I took her hand and wrote her sentences for her. This is ridiculous. I don't know why she can't just do her work like she always did before 1st grade. And why is an aid getting paid to let her leave school without completing her work? If I can get her to do it in an hour, her aid should be able to get her to do it in the 6 hours of her school day. I don't know...

Friday, September 25, 2009

Bullying....anxiety......getting better....happiness.

So my friends and family do not read this blog. They know I have a "secret" blog and that is about it. Isn't that weird? I like that I can just pretty much say what I want, say the truth and exactly how I feel.. and get some feedback from other autism moms and such.

Bullying the autistic kid:

AJ came home from school yesterday saying that some kid, Thomas told her she was "really stupid," and "not pretty." She said he came over and pushed her in the playground and then when they were back inside the classroom he threw her name tag in the trash and that her teacher didn't have anymore tape...whatever that meant...but she was very upset about it. She said she didn't want to go to school anymore now. So I called her teacher right away.

Her teacher had given me her home phone at the beginning of the year and I decided this was the time to use it. I called and left a message about what AJ had told me. I couldn't help but think though that maybe this Thomas kid perhaps had a crush on AJ. The thing is, is that AJ is quite remarkably pretty and people often comment on her looks and I know the kids in her class do think she is pretty. So he was trying to get a rise out of her (probably because she was ignoring him). But even so, he mustn't be allowed to torment her. She said he had left his soccer match with the boys to come over to her to push her, then went back to his soccer match. That sounds like a 1st grade crush to me really. But even so, she was threatened by it and didn't want to go to school because of it, so it needed to be stopped.

Well her teacher did not call me back last night so I went in a little bit early this morning and her teacher saw me and said, "Ahh! I got your message. We need to talk!!".

We stepped outside the classroom and her teacher told me that she didn't call me back last night because she didn't get my message until 11pm, but then she was so troubled by it that she couldn't sleep afterwards. So she looked online and chatted with other teachers about what to do. She then told me that her plan was that she needed me to tell her 3 things that AJ does, that shows she is super smart, and that she will share these 3 things with the rest of the class.

So I said, "She often tells me, 'Mom, when you are 46 I will be 16' and she can figure out pretty much any age difference between herself and any member of the family at any time in our future."

Her teacher said, "OK, so she can do double digit addition and subtraction in her head. Give me 2 more things."
"Well, she could read small words when she was only 2"
"OK, one more"
"She knew all of her states and capitals when she was 2."
"OK, perfect"
"But I don't think she knows them anymore though."
"That's OK, I've got my 3. What I'm going to do is have her aid take her out of the class and I am going to tell her class just how smart AJ is! Now I have to go in and teach." She hurried back inside her classroom, leaving me standing outside, holding Emmy, feeling a bit dazed.

So I went and got in the car feeling a bit troubled. It didn't seem like a typical way to approach this. I thought that she would take Thomas aside and help him and AJ have a dialogue about what was wrong, and then tell Thomas that it is not OK for him to push or call her stupid etc. But instead her teacher would be taking her out of the classroom, singling her out again, and addressing the whole class about the issue, who are all fine with her. So I sat in the car nd thought about going into the office and asking them to have the teacher call me when she gets a second. But I also didn't want to make a huge deal out of it. You have to pick your battles and since this was in the works of being resolved, I decided to trust her teacher and see how this odd approach went.

So when I went to pick up AJ this afternoon she came out with a huge smile on her face. Her teacher, the assistant teacher, and her aid all told me that AJ had a great day and that their talk with the class worked really well. Her teacher then told me that the kids in her class are very smart, very competitive and judgmental. She said that explaining how smart AJ actually is, made them have more respect for AJ and that she thought it helped immensely. She said that she told the class that they have to treat everyone properly, not just AJ. That sounded pretty good to me.

Taking AJ out of the classroom didn't seem to have a negative affect as AJ was really happy and even a bit chatty which is highly unusual. When we got in the car I asked her how it was with Thomas today and she said brightly, "It was really good!!!"
I couldn't help myself. I said, "See, I told you I could fix it."
I know that sounds totally self-serving, especially since I didn't fix it, her teachers did. But I wanted her to know that if she does confide in me when she has a problem, that I might actually be able to help her. So maybe this connection will keep her communicating with me when she is upset about something so that I can always try and help her.

I used to help my little sister when she was bullied. In fact, the only fist fight I have ever been in in my life was over some girl being mean to my sister. The same day my sister told me this girl was tormenting her in school, I remember I saw the girl that night in a teeny bopper dance club that we all went to and she walked past me and bumped me with her arm so I pushed her. She walked up and stuck her face in mine so I punched her right in the face. She ran away, which is funny because I am only 5'3" and was pretty skinny at that time in my life...I was 18. Anyway, the bullying of my little sister stopped and the girl, Jen, even apologized to me a year later for all of the stupid drama.

I helped my little sister another time when some kid, Ben, was yelling, "jew" at her in the hallway. The dumbest thing about that is that we are not even jewish. Our maiden name is jewish because my grandfather on my dad's side was, but everyone else wasn't and so no one, especially jews, consider our family to be jewish. But it was odd that he was yelling it at her to be, I don't know, racist or something. It was pretty disturbing.

The thing about my little sister is that she was very very pretty and never spoke a word in high school...not one word. So I think this kid was trying to get a rise out of her. But she hated school and didn't want to go because of this odd, nasty, yelling at her in the hallway. So I fixed it because I was friends with one of Ben's best friend's...a best friend who was older than Ben and I figured was kind of a mentor. So I called him up and told him what was going on and asked him to make Ben stop...and he did, and my sister was happy once again.

There is one time in my life that I was not able to fend off a bully. I was the one being bullied and I have always fended off anyone who tried to mess with me. I worked with her. She was my boss. And the difference between her and say, the boss in The Devil Wears Prada, was that she was physically threatening. She had slapped someone in the office before, she was huge, and CRAZY. She even told a coworker once about how she was going to kill everyone in the office. She had it all planned out...what gun she was going to use and who she would shoot in the back of the head and who she would shoot facing them etc. So as you can see, she was not your normal bully. She was a complete nutcase. But I kept working there. It was this terrible toxic environment and when I finally left, on the second to last day of my two weeks notice, I had a nervous breakdown at home, in the middle of the night. I had no idea what was wrong with me. I thought I was having a stroke. My hands were ice cold, my heart was racing and pounding, I could barely breathe. My husband (boyfriend at the time) took me to the emergency room and they examined me and told me I was having an anxiety attack. I was like, WTF?? They gave me some ativan and 3 more to take home with me. Then after that the anxiety came back for no reason. There was like a shelf when I tried to breathe, my heart was constantly racing. I couldn't get a full breath in. So I tried to go jogging but after my run, my heart didn't slow down and my breathing didn't get easier. I skipped my last day of work. Those bastards. Anyway...

I saw my doctor and when I went in there she said, yes, these physical things could be anxiety. I said that I couldn't fathom that anxiety could do make me feel so physically ill. So she gave me some Paxil and told me to try that. I went home and took a Paxil, thinking it would calm me down right away. DH was out somewhere and my anxiety actually got worse. I didn't know what to do with myself. I suddenly realized why people kill themselves and thought about suicide for the first time in my life. I thought about calling 911 but was too worried about what would happen. That was the worst few hours in my whole life. Well, at that time...before my sister's accident. Anyway, I finally called a psychiatrist in town and told her everything. She said it was very serious, to take one of those Ativan I got at the hospital right away and scheduled an appt to see me right away. I have to say that she pretty much saved my sanity, if not my life. I took ativan twice a day for a month until the zoloft she was giving me, kicked in. I went all the way up to 200mg of zoloft. Then it finally started working and I didn't need the ativan anymore. But it did weird stuff to me and I thought the weird stuff was my anxiety but I know now that it was side effects from the medicine. I felt like I had to clench my jaw and yawn all the time. Anytime I did exercize to get my heart rate up I got the yawns. I would get songs playing loudly in my head and I stopped playing and making music because it would stick in my head and screw with me. Especially in the morning. It was like the fight or flight symptoms never stopped, unless I was surpressing them with ativan. I knew the ativan was addictive and after a month, a bad idea to continue to take. So I didn't take more than 2 a day, one in the morning and one in the afternoon.

My biggest problem was that I was furious with myself for being "beaten" for not being stronger blah blah. I was so angry and disappointed in myself for being "crazy" although my psychiatrist assured me I wasn't. hmmmm....

Then after a couple of months, everything evened out and got so much better. I was seeing the psychiatrist twice a week and my diagnosis changed from post traumatic stress, to general anxiety disorder (I told her about my anxiety as a kid in middle school.) But it was the crazy boss who triggered this severe, crippling anxiety and it took years to get under control without medication...I would say 6 years to stop cropping up every few months or even weeks.

After my breakdown, I was on the very high dose of 200 mg of zoloft for 6 months. That means I was still on 200 mg on my wedding day. I finally went down to 100 mg after that, then weaned myself down to 50 mg when I got pregnant with AJ. I tried to go cold turkey during my first trimester and it was a disaster. But I think that my anxiety during the "cold turkey phase" was probably worse for AJ than the zoloft.

I only took a teeny tiny bit of zoloft while I was pregnant with Owen, and I took none this time while pregnant with Emmy. I didn't need it. All the anxiety melted away by my second trimester. I had never felt better in my life. I can't help but wonder if the awful shock and grief I felt from my sister's death, kind of rebooted my system. I'm not saying the shock was good for me, I mean I aged terribly over the 6 months following her accident, my whole family did too. But I think that mentally it changed some things, set them on a different paths...moved some paths around.

Now, I still have a bit of anxiety, but nothing like I used to have. My anxiety keeps me from driving out of town by myself or with the kids, and I never never drive on the interstate. That is also because of my sister's accident. But I am afraid of driving where one little mistake could instantly kill you. I am afraid of death, but not like I was when I was having serious issues, now it is in a way that I think most autism mom's fear it. Now I just feel like I need to be here for my kids, so nothing better ever happen to me. I also know that my parents and younger sister couldn't mentally survive another huge loss in our family.

So that is the history after my anxiety disorder was triggered. It had always been lingering as a kid, but didn't blow up until it was triggered. And perhaps that is how autism happens, it is just triggered like that too. Perhaps AJ will get better but always be a bit autistic, just like I am better but will always have a slight anxiety disorder. Who knows, perhaps with all of this new epigenetic research, maybe both my anxiety disorder and her autism will be cured. Hey, if they can cure anxiety in rats, they should be able to give me a little of that medicine.

If you stuck through this whole post, thank you :)

Thursday, September 24, 2009

1st grade stuff and some other stuff

So AJ is on the upswing and has been for a few days. In fact, the day after she stayed up with me and ate peanut butter, she had a really good day. This means, I think, that we can add peanut butter back in her diet again and not just for a one-time treat. Her nervous cough is gone now and Her teachers and aid think that they have "figured her out" at school. I guess when she was going through her work strike they were just letting her wander off to the book nook, and sit on pillows and read while everyone else was doing spelling and math. When I found this out I told them simply that she should only be allowed to do this AFTER she completes her assignments. Now, she magically does her work and then gets to have free time. We are still struggling with handwriting getting in the way of her writing stuff freely, although today was the first day that she just wrote a story in her journal. The letters were all mixed up with caps and lowercase and many were turned the wrong way...BUT fewer were backwards than last month and fewer were capitalized. She just has a major problem with the letter a...she only wants to write, A. Oh, well, this seems so minor but once she learns something it gets stuck in her head and it is like we have to unlearn that it is OK to mix up caps and lower case. It is not like most kids where you just kind of change what you do....with AJ you have to teach her to unlearn this way of writing then help her relearn how to do it properly. Then the odd changing in how she is supposed to do it, upsets her. I don't know why they didn't teach the kids how to do it properly the first time around. When I was a kid, I was taught it properly and wasn't left to learn my own way of writing...mixing up all the letters and such.

When I pick her up from school I talk to her teachers and aid almost every day for a few minutes. So when DH and I went to AJ's open house tonight we didn't really learn anything new. I just completed the "parent assignment" which was to draw a picture in her journal and write about it. I drew a picture of our family, wrote our names over our heads then wrote it the book: Hi AJ, Your journal looks great. I love you so much. Love, Mommy (and DH wrote, "and Daddy.")

I noticed at open house when I looked in her journal that she only drew pictures with no writing until a couple of days ago and I thought it was kind of strange that she was left to struggle and just write stuff freely. When I was a kid I was given a book where I drew on one side then I brought the picture to the teacher who asked me what it was then wrote it down on the next page...for example: "This is a beautiful fairy. She has pink wings with blue on them."
Then I would copy the teachers writing undernieth each word. This way I got used to how it should look and such...until I was ready to start writing it on my own. I did this a bit with the kids over the summer but AJ really needs it more. So maybe I will start doing it at home again with the kids. As if I didn't have enough to do :) Target has these cool notebooks where it is blank on the top of the page then lined at the bottom. I'll get a couple of those.

After open house, DH and I went out to eat. My parents were watching the kids so we snuck in a bit more alone time and had a nice dinner. I even ordered a cosmopolitan and didn't get a headache!! I didn't drink the whole thing though since I knew I would be nursing Emmy in a couple of hours. It was nice to relax though. I felt so much better after a small drink and got all happy and chatty with DH. Our food was delicious and a tiny dragon fly landed in my water! DH saved it and we watched it sit and dry out its wings for a little while then fly off. I got a new water. As much as dragon flys are pretty, I still don't want to drink after them.

I did something kind of weird. I asked my sister's husband (the sister who passed away) if I could have her fake Christmas tree. I was thinking about how a few years ago she was obsessing about finding a hot pink Christmas tree, then she found it and paid like, $400 for it. I thought it was really funny that she wanted it, and wanted it so bad that she paid a lot of money for it which wasn't really like her. I thought about how it would be so cool to have since she was always with us for Christmas before and it would be like a representation of her and the kids would decorate it and she would be with us through Christmas. DH was a bit "ugh" about the prospect of a hot pink Christmas tree, especially since he really enjoys picking out real ones each year. But he said if it meant a lot to me that it was fine with him. So I emailed my sister's husband last week, asking him, and he hasn't emailed me back. Now I am starting to feel a bit weird about the whole thing. I'm also wondering if I really want it after all. I mean, maybe it will just be sad when I look at it and glaring in my my living room.
Hm, I have a feeling he will not want to give it up. Although I can't imagine him putting it up. This is the first thing I have asked for. He did bring me her bike, which I haven't ridden yet, and all of her sewing stuff, which I haven't used. It is weird to have that stuff. Hm. Maybe it will be weird to have her Christmas tree. Maybe it will just be sad.

Stuff coming up: DH is going on tour for a week with his band and they are going to play at CMJ in NY. He was all excited tonight because CMJ is giving the bands new shoes. Their new album is coming out next month. Also coming up...For my birthday we are traveling 3 hours south to my hometown where I am going to see all my friends . The fam is going to stay at my friend, Tina's house. I am going to attempt to have a girls night out with my friends there so that will be fun/interesting. DH and Tina's husband will watch the kids who are going to have a fun sleepover. Gosh I would love to go dancing. I think that is a bit too ambitious though. Also coming parents are closing on my childhood house next Wednesday. Holy crap, that is an emotional thing I will have to try and live around.


Thursday, September 17, 2009

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 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.