tag:blogger.com,1999:blog-87763613602534395092024-03-19T05:50:01.291-04:00Autism Mom JourneyA look at biomed in my little girl with autism. I knew nothing about nutrition before I learned through talking with other parents, and by trial and error that nutrition really does figure into the treatment of autism. I have been amazed at how diet intervention (adding some foods and taking out others) does make a difference in AJ's focus, interaction levels, and simply her overall comfort levels.Unknownnoreply@blogger.comBlogger132125tag:blogger.com,1999:blog-8776361360253439509.post-90258731231788256782011-03-31T02:01:00.000-04:002011-03-31T02:01:47.466-04:00Hold Off On The Added Attention VitaminThey 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 world...so that is good.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8776361360253439509.post-11911233476638268382011-03-19T14:45:00.000-04:002011-03-19T14:45:03.050-04:00Hello AgainIt has been over a year since my last post. I wanted to update and say that AJ is doing really well right now <i>and</i> 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."<br />
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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.<br />
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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:<br />
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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.<br />
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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. <br />
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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. <br />
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So that is my update. Things are good.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8776361360253439509.post-29586089967355033932009-10-16T23:33:00.004-04:002010-01-01T21:27:53.087-05:00Facebook is kind of FunnyWhen 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."<br />
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.<br />
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. <br />
me.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8776361360253439509.post-298484129685528332009-09-29T20:55:00.007-04:002009-09-29T21:03:12.980-04:00Won't Do ClassworkAnother 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...<div>me</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8776361360253439509.post-54914540650447934492009-09-25T23:25:00.015-04:002009-09-29T21:02:11.637-04:00Bullying....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. <div><br /></div><div>Bullying the autistic kid:</div><div><br /></div><div>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. </div><div><br /></div><div>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. </div><div><br /></div><div>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!!". </div><div><br /></div><div>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. </div><div><br /></div><div>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."</div><div><br /></div><div>Her teacher said, "OK, so she can do double digit addition and subtraction in her head. Give me 2 more things."</div><div>"Well, she could read small words when she was only 2"</div><div>"OK, one more"</div><div>"She knew all of her states and capitals when she was 2."</div><div>"OK, perfect"</div><div>"But I don't think she knows them anymore though."</div><div>"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.</div><div><br /></div><div>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.</div><div><br /></div><div>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. </div><div><br /></div><div>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!!!"</div><div>I couldn't help myself. I said, "See, I told you I could fix it."</div><div>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. </div><div><br /></div><div>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. </div><div><br /></div><div>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. </div><div><br /></div><div>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.</div><div><br /></div><div>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...</div><div><br /></div><div>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 <a href="http://www.crazymeds.us/paxil.html">Paxil</a> 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 <a href="http://www.crazymeds.us/ativan.html">Ativan</a> 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. </div><div><br /></div><div>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....</div><div><br /></div><div>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. </div><div><br /></div><div>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. </div><div><br /></div><div> 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.</div><div><br /></div><div>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. </div><div><br /></div><div>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.</div><div><br /></div><div>If you stuck through this whole post, thank you :)</div><div>me.</div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8776361360253439509.post-13289285866578702342009-09-24T00:03:00.007-04:002009-09-28T01:01:53.883-04:001st grade stuff and some other stuffSo 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.<div><br /></div><div>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.")</div><div><br /></div><div>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."</div><div>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.</div><div><br /></div><div><br /></div><div>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.</div><div><br /></div><div>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. </div><div>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. </div><div><br /></div><div>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 up...my parents are closing on my childhood house next Wednesday. Holy crap, that is an emotional thing I will have to try and live around.</div><div><br /></div><div>me.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8776361360253439509.post-89983290716543896002009-09-17T23:22:00.004-04:002009-09-17T23:47:33.542-04:00First Grade and StuffI 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. <div><br /></div><div>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. <div><br /></div><div>I have these forms that the autism society sent out a link for. Here is the <a href="http://www.autism-society.org/site/News2?page=NewsArticle&id=14701">link</a>. 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.</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>I'm tired, I'm going to bed.</div><div>Goodnight,</div><div>me.</div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8776361360253439509.post-60825110831719456162009-09-16T01:32:00.002-04:002009-09-16T01:38:47.914-04:00Wow so much has been going onAJ 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. <div><br /></div><div>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. </div><div>me.</div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8776361360253439509.post-49659181357109520842009-08-07T22:15:00.005-04:002009-08-07T22:23:43.459-04:00Obsessive Doll ArrangingSo 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. <div><br /></div><div>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.<div><div>me</div></div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8776361360253439509.post-13344067926617059332009-08-06T22:09:00.008-04:002009-08-07T22:25:08.789-04:00this sucksI'm kind of freaking out right now. DH told me that he bought a midi keyboard for his band. This is at a time when we have no money and I have been busting my butt to get wedding video bookings and editing whenever I get a second between taking care of the 3 kids. The keyboard was $250. I feel like he is pissing away my hard work...on his band. He said he bought it because I got a booking and 2 more inquiries. I have been so stressed lately with trying to keep the business going so we can pay our mortgage, so stressed that it made me sick with this shingles..which you only get when your immune system is compromised and/or if you are suffering from severe stress.<div><br /></div><div>If I spend too much money it is because I went to Gymboree and went a bit nuts on the sale rack or something. It is always for the kids or our family. I am so disappointed that his splurge is for the band while our family is suffering severe money issues. There is so much we could do with $250 right now for the business. This recession is kicking my ass.</div><div><br /></div><div> His band is really good. They are getting ready to release a new album and go on tour. He loves it and I try hard to support him. But tonight...I hate it. Tomorrow I will gather myself up again and look on the bright side again. Now, I think I will make myself a cup of decaf tea to try and get rid of this migraine, and maybe find something mindless on TV.</div><div><br /></div><div>me.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8776361360253439509.post-38701704801924364702009-08-02T12:45:00.006-04:002009-08-02T13:11:35.615-04:00The happy panickerGood afternoon. This morning I slept and slept while DH made blueberry pancakes for the kids and did laundry and then cleaned the kitchen. Please call me the luckiest person in the world. <div><br /></div><div>Acutally he probably did it because I had really bad anxiety last night for the first time in a long time. I actually had gone to sleep at 10 then woke up at midnight in a panic. I called to DH who finished up his video game level then came in to see what I needed. I told him my skin hurt and I was panicking. I told him that I didn't want to look at these same f....ing walls. He said that the laptop was right there and so was my iphone. I said no, I need a book or photos or something. He left and came back with a big wad of photos from the photo drawer, many of which were from our wedding. That made me smile and we went through them together. Then when we got to the photo of my parent's old house at Christmas time I started to cry. They sold that house yesterday. It was on the market for over a year, almost 2 years I guess. It is a huge 5 bedroom 3 bath, two story red brick house with a huge front and back yard and our swing on the oak tree out back. They sold it for $175,000 which is digustingly low for that amazing house...my childhood house. But the people buying are really excited about it, which makes it better for some reason. <div>So I realized that is why I woke up panicking. I also was panicking for a very, very, weird reason. It was this video, this short 4 minute story that I watched right before bed and then seemingly for hours, played in my head like clockwork till I woke up freaking out. If you watch it and can figure out why I was panicking about it, I'd love to hear your theory because I have none. p.s. he didn't give them 50cents.</div><div>me.</div><div><br /></div><div><embed src="http://c.brightcove.com/services/viewer/federated_f8/271557392" bgcolor="#FFFFFF" flashvars="videoId=3651174001&playerId=271557392&viewerSecureGatewayURL=https://console.brightcove.com/services/amfgateway&servicesURL=http://services.brightcove.com/services&cdnURL=http://admin.brightcove.com&domain=embed&autoStart=false&" base="http://admin.brightcove.com" name="flashObj" width="486" height="412" seamlesstabbing="false" type="application/x-shockwave-flash" swliveconnect="true" pluginspage="http://www.macromedia.com/shockwave/download/index.cgi?P1_Prod_Version=ShockwaveFlash"></embed><br /></div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8776361360253439509.post-7237038165122516812009-08-01T21:59:00.004-04:002009-08-06T22:57:19.023-04:00a couple of thingsOK this Shingles stuff is a bit more uncomfortable now. It isn't so uncomfortable that it makes me panicky, and it isn't worse than a headache or stomach ache, in fact it is still better than either of those. But my skin is starting to hurt and my neck is sore too. The weird thing is that it looks like the rash is starting to clear up. This evening I told DH that I think I am getting sick because my neck aches an my skin hurts. He said "You are sick. You have shingles."<div>"Oh yea."</div><div><br /></div><div>But my skin hurts all over, not just near the rash, which is what happens when I am getting sick. </div><div><br /></div><div>Tonight something wonderful happened. I lay down with AJ for a while as she was going to sleep and we chatted a bit. She will chat with me to keep me there since she likes having company when she is fighting going to sleep. So I get to chat. When we were done I told her thank you for talking to me and that I love talking with her. She said, "Mom, you make my heart super happy."</div><div><br /></div><div>I just about cried right then and there. She is such a beautiful child. I just want to keep her safe and happy every second of her life. I think it is good enough now though that we love each other and hang out a whole bunch.</div><div>me.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8776361360253439509.post-31847172642540510132009-07-31T18:51:00.003-04:002009-07-31T18:53:14.001-04:00Breast feeding and AutismThis is sooooooo depressing<div><br /></div><div>http://www.ucsf.edu/science-cafe/conversations/merzenich/</div><div><br /></div><div><br /></div><div>It talks about a study saying that breast feeding causes autism (PCB's) and the source is credible. This sucks. I'm not stopping yet, but, big sigh.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8776361360253439509.post-39296419857484441802009-07-31T01:45:00.003-04:002009-08-06T22:58:32.860-04:00shingles and nursingIt 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.<div><br /></div><div>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. </div><div><br /></div><div>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.</div><div><br /></div><div>OK, goodnight for now.</div><div>me.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8776361360253439509.post-66371696083912534672009-07-29T13:06:00.005-04:002009-08-06T22:59:04.318-04:00shingles, autism, recessionI'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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />me.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8776361360253439509.post-25753976783078414992009-07-27T22:29:00.001-04:002009-07-27T22:31:00.227-04:00A helpful Yahoo Answer to my question about ShinglesMy Question:<br /><br />When do Shingles start to hurt? I am on day 1 and no pain but worried the rash will start to hurt?<br />I have covered the rash with bandages and see red lines down my back where I guess it is spreading to. I have no pain and mild itching. My dermatologist prescribed Valtrex but I see no need to take it if there is no pain, but I am worried the pain may suddenly start. Does anyone have any experience with this day by day?<br />Thank you for any help.<br /><br /><br /><br />Answer: (from a very smart 13 yr old!)<br /><br />Yikes. im sorry to hear that you have shingles. im 13 and i got them this year. yes, they will get very painful. but what helped me SO much, (my doctor didnt even recomend it, my mom told me:) is calamine. its a pink liquid. you apply it on the rash and leave it there. what it does is drys out the blister and then they will tend to fall off. i had to gob on the calamine. its very cold also and feels good when you put it on the rash. relief. i put it on with a cottonball. so i would start with that before the pain comes because trust me, it killls. but dont be scared. because you'll feel a whole lot better with calamine on(: aha. and also, when the calamine starts to work and dry the blisters out, DONT scratch at them or pick at them. it will leave scars:/ i have a collage of dots on my side and chest because of these nasty little thingss. and dont pop them either. this will spread the diease. <br /><br />P.S. sorry i dont have a day by day.. but the first couple of days i didnt feel anything. i thought it was acne or something. but when the blisters start to really pop out of your skin, you will feel it. just be strong.(: and good luck!<br />Source(s):<br />experience.. *sigh*Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8776361360253439509.post-24902221501966491572009-07-27T17:44:00.010-04:002009-09-16T01:44:56.260-04:00Oh 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. <div><br /></div><div>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.</div><div><br /></div><div>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.</div><div>The next doctor came in and looked at it and said it was shingles. </div><div>I said, 'I thought only old people get shingles."</div><div>She said, "Anyone who had chicken pox as a child can get it. Doe it hurt?"</div><div>"no."</div><div>"You are very lucky that it doesn't hurt because it can be very painful."</div><div>"No it just itches a bit."</div><div><br /></div><div>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:</div><div><br /></div><div>1. bandage the blisters well</div><div>2. put plastic stuff over the bandages (Tegaderm)</div><div>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.</div><div>4. feed her the milk that I pumped.</div><div><br /></div><div>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. </div><div><br /></div><div>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. </div><div><br /></div><div>They also took a mole off to send away for a biopsy. </div><div><br /></div><div>I'm off to bed now. I hope it isn't a bad idea not to take the Valtrex.</div><div>me.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8776361360253439509.post-81923961340506980422009-07-22T01:24:00.002-04:002009-07-22T01:31:01.567-04:00Gluten Free, Casein Free, Soy FreeI hear about people trying Gluten Free Casein Free and it not working but I wonder if they took out soy or not, or if they tried it for a good period of time. When we were off the diet, AJ lived in a fog. If I mess up the diet, she goes back into her fog. On the diet, she is aware of her surroundings. On the diet (very strictly) with methyl b12 shots added, she is awesome.<br /><br />I have to be so strict about keeping any trace of soy, gluten or casein out of her diet and it is such a pain. Soy is almost as bad as gluten too. I have a feeling that most people do not do the diet this strictly and I have a feeling that if they did, that the results would be different. This means also cutting out fast food and anything that is processed. It means keeping the salt and sugar intake low and simply getting rid of anything with a long list of ingredients on the label.<br /><br />I don't think that the diet is given a good enough chance. Maybe I'm wrong, but I have that feeling. I want to know if I am wrong so tell me if I am wrong.<br />me.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8776361360253439509.post-20225449166620125182009-07-21T00:15:00.002-04:002009-07-21T00:47:49.349-04:00Today was day 1 of the 5 weeks till school starts and it was a really nice day. I met friends at the park since it wasn't 100 degrees out this morning and realized that they both were doing the 5 week no camp thing too and so we will do play groups and such together. This is actually going to be fun. I slept in a bit too while the kids played educational computer games until I got up. I was nice and rested since I didn't have to get up and get everyone ready for camp. <div><br /></div><div>I talked to L's husband tonight. More on that later</div><div>me.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8776361360253439509.post-72347044082129062292009-07-20T00:36:00.002-04:002009-07-20T00:52:06.947-04:00Oh my godSo I am going to be home with the kids for 5 weeks before school starts. FIVE WEEKS. I can't afford more summer camp or babysitting. And I have a huge wedding video that needs to be done in 3 weeks that will take about 80 hours to edit. How do I do that with 3 kids at home with me during the day...one being a 4 month old? So I am up tonight working on it. This post is my break, along with some chips and hummus. <div><br /></div><div>So I have decided to change my game plan a bit. I am now going to offer less expensive videos and do less editing. I never wanted to do that before. I just wanted to do super fun challenging stuff, with lots of cool effects and music, and charge a good amount for it. But I am FREAKING out right now because I am getting no bookings. I guess no one wants to spend $3000 on a wedding video these days. For the big ones I was traveling, even out of state. But now I won't travel because of Emmy and no one in our little college town is snatching us up, or even knows about us really. I have been trying to shmooze the local wedding vendors this past month but with no bookings I don't even have $ to buy more business cards to give out. I am doing everything I can on all the social media sites short of completely spamming people, and we are having a photographer and his family over for dinner on Friday. I am going to do a bridal show in September that is breaking the bank for us now. I didn't think the economy would affect us since people don't stop getting married. But it has...and we are buying groceries on the credit card this week that we just paid off with our taxes a few months ago. </div><div><br /></div><div>This sucks.</div><div>me.</div><div><br /></div><div>me.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8776361360253439509.post-19741644313017127372009-07-17T00:04:00.006-04:002009-07-17T23:22:07.607-04:00The 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.<br /><br />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.<br /><br />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 <span style="font-style:italic;">I<span style="font-weight:bold;"></span></span> 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.<br /><br />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.<br />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.<br /><br />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.<br /><br />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. <div><br /></div><div>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.<br /><br />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.</div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8776361360253439509.post-86588459851481539382009-06-21T03:51:00.003-04:002009-06-21T04:24:00.894-04:00Hello AgainI haven't posted in ages for a few reasons<br />1. I am in baby world and loving it<br />2. I am working hard on building up my business in town so I don't have to travel to film the weddings<br />3. AJ is doing really well and I haven't had much to report<br />4. I started a blog for my business and have been spending time on that<br /><br />So, for an update. Emmy is all roly poly cherubby tubby little thing. But it is all from breast milk, not Cheetoes. She is happy and calm and sweet, not fussy. Although over the past couple of days she has started teething and being a bit grumpy. When I realized I had an easy baby on my hands and not much money, I decided to really get the business going and to get it going here in town so I don't have to be away from Emmy for long. So nursing is going well. After I took Diflucan for a couple of weeks everything got better and it was smooth sailing from the on (despite 2 mastitas bouts that I kicked without antibiotics).<br /><br />AJ is in summer camp now and has made a friend...another little girl who is on the spectrum. I saw her the other morning when I dropped AJ off and was a bit surprised that her hair wasn't brushed at all in a way that looked a bit neglectful and her outfit was like she had found it at the bottom of the dirty clothes hamper. But this camp is expensive so there isn't poverty involved. I almost said something to AJ's teacher but then decided that a kid could look that that sometimes over the summer and I perhaps next time I see her she will be a bit more groomed. But then I saw her again and it was even worse. I thought, well, maybe they take hippie to new levels? I don't know, but this is AJ's new great friend. She has a twin brother who is also in the summer camp with them. AJ wants me to invite her over and I will, but as usual this is very nerve wracking for me as I have no idea what the reaction will be from her family. I will post about it after I send the note/invite. <br /><br />We are going on a beach vacation next week. This is our first real vacation that will last for a whole week. DH's family is renting a beach house and we are going to drive up and meet them there. The kids are so friggin excited. I think it might be a bit of a challenge with a baby on the beach, but I am going to get one of those beach tents from OneStepAhead.com<br /><br />OK, I'm finally tired.<br />goodnight,<br />meUnknownnoreply@blogger.com0tag:blogger.com,1999:blog-8776361360253439509.post-62222864876668826082009-06-01T00:19:00.009-04:002009-06-04T22:59:20.966-04:00Late Sunday Night PostAJ's doing really well. Some days she is still a bit foggy, but I have noticed that lack of sleep seems to be a huge reason for fog. It is like everything just affects her more than typical kids. But she is talking up a storm and I LOVE getting to see what is inside of her head. It is pretty amazing. She is trying to make jokes these days and has about 90% misses because of saying inappropriate things then laughing, for example: "I'm going to eat Emmy!" so, slightly disturbing and not really funny. But sometimes she gets a winner, for example, she and I and Emmy are all not having dairy so AJ likes to say that the girls are allergic to dairy. Then she heard me say in the car that Owen is allergic to cats and DH chipped in and said he was allergic to cats. So AJ said, "The no-dairy's are not allergic to cats." <br /><br />Our summer break started last week and the kids have been making lots of artwork. They have been making books...drawing lots of pictures then dictating the story to me while i write type it on the computer and print it out so they can paste the words in their books and read them to me. It is great for getting them to learn to read new words because they love reading the books that they created. The artwork is wonderful too. <br /><br />I'm just really happy and satisfied with my life right now. Of course there could be improvements. I wish I were more caught up on my wedding video editing that is alarmingly behind. But AJ's aid, let's call her C, is going to start babysitting the kids this summer and so I will get some work done. I am going to pay her $100 a week but it will be worth it to catch up on my work. It feels good to have a plan to fix this problem. I have the house clean now, the laundry caught up and everyone is asleep (and not sick). So I feel pretty good right now. <br /><br />(Read the following only if you are not squeamish about death.)<br />It has been a strange time though in a way. I feel almost an urgancy to enjoy my life because I have been so alarmed by death. It was my sister's birthday last weekend. She would have been 39. Our family and my parents went out to her and the baby's grave (they were buried together) it says, "Eternally in our hearts, eternally in mommy's arms." I chose that wording actually. I chose the wording for my sisters side of the stone too. She would be glad about that I think. So even though her death it is getting to be a bit more normal, it is still more shocking than anything else. I don't think that will ever go away, which is OK. I didn't bring her flowers but my mom did. She brought her white lilly's which were in her wedding bouquet, and mine too. I stood there by myself and talked to her for a while. I was annoyed when anyone came up and interrupted me. I just wanted to talk to her privately then say goodbye and leave...which I did eventually. My shrink from a while back told me that there is more energy at graveyards than in other places and this is somehow scientifically documented. I think this is one of the reasons I want to go there, because of what he said. Otherwise I would think that it wouldn't matter because she is with me wherever I go anyway and I don't need to go there...when she is here right? I dunno.<br /><br />Then, my friend's mom died of cancer two weeks ago. I held her mom's hand and told her I would take care of her daughter, an hour before she passed. I only was in there for about 2 minutes and was shocked by what she looked like. only a few weeks before that she had looked great. Here her face had nothing between the skin and the skeleton it seemed. Her eyes seemed to be popping out. It was shocking and I thought that no one should have to ever be in that position. I thought about how labor and having a baby even by C-section, is so difficult and intense. It is like a right of passage and I think that the life that is born takes so much out of us, the pain is shocking and dreadful. BUT the light at the end of the tunnel is that we have a beautiful baby to hold in our arms. There is a miracle in the room afterwards. So when I looked at my friend's mom, at the shocking and dreadful time she was going through, I realized that I had previously thought that labor was the worst pain and right of passage I would have to go through in my life, besides the ocean of grief I have also had to wade through. But now, seeing her, I realized that there in more in store. I realized that dying is terrible and it scared me. But I can't help but wonder...we get such a miracle at the end of giving birth, that perhaps..just perhaps...there is a miracle waiting for us at the end of dying? Probably not. BUT, my other friend who works for hospice told me that people who are minutes from dying talk to people in the room that she can't see and it give her goose bumps. I liked that. She is a trustworthy person and doesn't make shit up. <br /><br />Finally, I think of a quote, "Life is the good part between tragedy." That is where I am at right now. I am so glad to be alive and I am working on keeping thoughts and feelings like this at bay and in perspective so that they are something I write about at night and not something that bothers me during my daily life routines and playing with my kids. Instead it gives me permission to be happy with what I have now, that it is enough..more than enough. And this makes the fact that I don't know when I am going to die, a little less relevant.<br />me.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8776361360253439509.post-41953282221596676132009-05-03T01:23:00.001-04:002009-05-03T01:25:04.538-04:00funny stuffYesterday AJ and Owen were being very quiet and when DH and I looked for them on the couch, Owen had some tape and was wrapping it all over AJ's head, all in her hair and across her forehead and they were both laughing. They had the Macbook on the couch with them and DH saw that they had been using the Macbook to take pictures of their escapade using the Photo Booth app. They also used one of the weird effects that they have in photo booth. We thought that was hilarious. Luckily it wasn't too hard for AJ to get all the tape out of her hair and off her skin. I liked that they did something together, even if it was a bit naughty. Check out some of the pics...<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPkEiApkwCIp4ddDSO2I_2zlJORL_83o_z0f4LDEE2CFYuhjYIIryzFb23auuim46bRyukyTiDratwU1d5cydTT4O2m07yo-WbKfLJAU82GA0IkG2va9aJfx-AKfOZxqH-WwSBaI_anUUq/s1600-h/Photo+211.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPkEiApkwCIp4ddDSO2I_2zlJORL_83o_z0f4LDEE2CFYuhjYIIryzFb23auuim46bRyukyTiDratwU1d5cydTT4O2m07yo-WbKfLJAU82GA0IkG2va9aJfx-AKfOZxqH-WwSBaI_anUUq/s320/Photo+211.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5331463571195879826" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDy3SWAPjEEhgYpDv9xTh7OlcGzalNdVbOX2P20noIPxy7CfApiIkNmBJC5zqaVHup8qy5EkLvkKVFxB9tFobWrlD5M6D2HXhIQVK36RvmEIdEbZgCrMLDgxkAnFpnSHeTY_nSVlYjAriD/s1600-h/Photo+210.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDy3SWAPjEEhgYpDv9xTh7OlcGzalNdVbOX2P20noIPxy7CfApiIkNmBJC5zqaVHup8qy5EkLvkKVFxB9tFobWrlD5M6D2HXhIQVK36RvmEIdEbZgCrMLDgxkAnFpnSHeTY_nSVlYjAriD/s320/Photo+210.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5331463477538308034" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQEjaF4V8new3-rgltaMSNrPqIS1bDUAMYbGj3M6rmdkGZAvL-qsn1u4ppP6peQKnHjJt4US5hlnHYnFoA68Mu7uTtaDgRlqU2-DJtu1msAD8-1Bd3d5nHyTSyka3h3nVmuhg0IKEKv6EL/s1600-h/Photo+209.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQEjaF4V8new3-rgltaMSNrPqIS1bDUAMYbGj3M6rmdkGZAvL-qsn1u4ppP6peQKnHjJt4US5hlnHYnFoA68Mu7uTtaDgRlqU2-DJtu1msAD8-1Bd3d5nHyTSyka3h3nVmuhg0IKEKv6EL/s320/Photo+209.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5331463372998772034" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8776361360253439509.post-7773374859686569602009-05-03T01:00:00.008-04:002009-05-03T01:26:16.869-04:00L thoughtsTonight I thought about after my older sister's accident, we will call her L, my younger sister, Claire was crying in her room at my mom's house. Let me clarify. This was only a few days after L's accident and Claire had flown from Israel with her husband...boyfriend at the time. I was there with DH and the kids were there and my parents. They have a big house (that they are still trying to sell now that they live up here.)<br /><br />So it was morning and I heard Claire crying so I opened her door and went inside. Her husband was on the bed too but I just went right over to her and held her while she cried. She said she had a dream and I made her tell me the dream. She said she dreamed we were at the baby shower, it was one that we had just been to a few days ago for our good friend. But in the dream, L was there and she had a bandage on her stomach and that she knew she was going to die in a few days. <br /><br />Then Claire told me that she woke up and the dream was true. That L was really gone and it wasn't just a dream. I told her that no that wasn't how it happened so her dream wasn't true. I said as I held her while she sobbed, that L didn't know she was going to die and that she was happy and that she didn't know at all and that one minute she was there and the next she was gone. I said that it was very different. I think I made her feel a tiny bit better but we were both kind of freaking out. It was terrible.<br /><br />I keep waiting for L to come back. I keep waiting for all of this to not be real. Even after almost 2 years it doesn't seem real. It doesn't seem possible that she would be gone and the rest of us, my parents, me and Clair, to still be here. That just isn't how it was supposed to be. I still can't wrap my head around it. It helps that Emmy's middle name is after L. It somehow softens it all a little which is a bit strange but I think it even helps my parents. And when people send gifts for her they include her middle name on the card. No one ever did that for AJ and Owen.<br /><br />Emmy is doing wonderfully well.Unknownnoreply@blogger.com2