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 :)

me.

The positive side of autism?

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

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

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

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

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

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

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

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