Ok, mom got her keyboard courtesy of Nana's par amour, Dan.Thank you, Dan!  Let the blog continue!

Sorry Nixi left with a cliff hanger last week about the EEG.  So here's the deal, Nixi has always had some memory issues and loose or tangential speech.  That's always concerned mom but an EEG is a real pain in the head so we've been putting it off.  Well, starting September 5th and lasting a week and a half Nixi was hallucinating.  She began having visual hallucinations of colors, grey falling stars, and eventually shadows that were speaking to her.  It was terrifying for all of us and culminated in her crying and screaming that she wanted to live alone with the pets because she was afraid of mom, dad, and me.  She just lost all touch with reality and was absolutely terrified.  It took mom a couple of hours to get her "back".  That was a few days after mom had taken her to the pediatrician for a referral for an EEG.  These issues could be caused by epilepsy, more specifically occipital epilepsy.  So, she's scheduled for an EEG on October 10th but unless there is an emergency we wont get the results until October 29th as that was the first appointment neurology had.  Mom will call every day hoping for a cancellation because that's a long time to wait to figure this all out.  Nixi is back to her normal goofy self, although she continues to report hallucinations and now is experiencing what are called illusions.  Illusions are when your perception of real objects are skewed, like misinterpreting a shadow as a person or a light bulb as a terrestrial light.  So, the poor kid isn't sure what's real and what's not so its hard for mom and dad to tell what is a hallucination and what is an illusion.  Hopefully we get this all figured out soon.  She's in pretty good spirits and we're trying to keep her stress down so fingers crossed that we don't lose her again.

I'm doing pretty good with school.  Mom met with my principle and the school psychologist about what happened the other week when I was put in the front office crying and alone.  The meeting was strange.  It started out with my principle taking the offensive approach because it was clear that he felt bad about the way things had happened and was defensive.  The best defense is a good offense so he sort of went at home accusing her of giving mixed messages to the school and asking her if she always did everything perfect.  Mom did a great job of not tearing into him, though she wanted to.  Instead, she let him rail on for 20 minutes and then refocused him back the issue at hand.  Once she was able to chink his armor the truth came out which was that the school doesn't know what they're doing and they know they made some mistakes and felt badly about it.  Mom assured him that it was ok to make mistakes and that she doesn't expect them to be perfect, but she does expect them to ask questions about things they don't know and  that she is still concerned that the supports she's providing the school aren't trickling down to me.  They came up with several plans to help me stay at school and so far its going great.  I'm still have my struggles but I have yet to need to go home and that makes me feel great.  It feels so miserable to feel like a failure and that's exactly how it feel when I have to leave my friends and my class.

Friday at school was one of the days I struggled.  We had a visit from a D.A.R.E. police officer then a student of the month assembly.  I had a rough morning and the principle came to my class to see if I wanted to take a break in his office.  I didn't and I was able to get it together and stay with my friends for all of the excitement.  It was a weird, kinda fun, sometimes scary day but I made it through to the end!  Very proud of myself.  After school mom, dad, and Nixi picked me up and we went to the park and did the fountains.  Dad had the day off...very cool.  Mom and dad even went into the fountains with us in their clothes!  It was so awesome.

Saturday Nix and I both struggled.  I was coming off of the big school day on Friday and Nix was coming down from the excitement of dad being home Friday.  We really wanted to go to McDonalds but it was a no go and we were really disappointed.  We did a great job of pulling it together on Sunday and we got to go.  So it was a great day!

There you have it.  We're super excited for October and get to decorate the house on Monday.  October means decorations, costumes, the pumpkin patch, and special shows...so great!  Hope you all welcome October this week with some spooky decorations and good fun and Nixi will catch you next week!

xoxo
Safi

Here's some pictures from last week of mr playing with my friend, Sophia, from school....

And a really cool big kid who organized a game for all of us to play.....

So, mom has ordered a keyboard for her tablet online but it wont come till the middle of the week so we'll leave you with some video and pictures....ok, no pictures.  Mom's been trying to help me post them and after an hour of trying on the phone and tablet, we're done!  Make sure to check back next week to hear how mom's meeting with Safi's school went last week and to hear why I'm having an EEG done October 10th.
Peace
Nixi

Front yard safari!
http://www.youtube.com/watch?v=3AWEnAx6RXs&sns=em

Man, another rough week.

Nixi had her first field trip and it was marginal.  It was to the country fair like I used to go to when I was in preschool.  She was excited and nervous from he moment she woke up.  Excited about the fair but not really loving the whole idea that the fair would be taking place of the routine school day.  She road the bus like a champ, with mom sitting the seat behind her. Once she got there she was super overstimulated and very anxious, repeatedly asking to follow the visual schedule that they had made in class the week before.  Unfortunately, the guide for the tour was unaware of any schedule AND he kept getting lost so it was a recipe for disaster.  And disaster it was.  She got to pet a sheep and watch a pig take a shower, but those were fleeting moments of joy.  She was on edge and by the time they got to the building showcasing their artwork, it was over.  She noticed that her name tag had fallen off and BOOM, she exploded into a screaming, crying, confused, scared little whirlwind.  Mom got her out of the building, but when she realized that they were to eat their snack at the fair she just started screaming "snacks at school" and it was a good 15 minute meltdown.  She pulled it back together at the end and made it back on the bus with no problems.  Poor kid.  Wish she'd enjoyed it more but proud of her for making it through to the end!

Speaking of making it through to the end...I had a rough end to my week.  Friday was library day at school.  I was anxious about it from the following week but trying really hard to keep it together, too hard it would appear.  My teacher had no clue that I was still anxious so I wasn't given any added visual supports before we went.  We got there and I was totally overwhelmed.  There were soooo many books and it was the first day that we were actually going to check one out.  I was so excited and I was having a hard time deciding on a book.  I picked one and checked it out but when it was time to go I lost it.  I decided I wanted another book, but some kid already had it.  That was really all I needed to tip me over the edge of the cliff on which I was already standing and I fell...hard.  It was my biggest meltdown at school thus far.  Mrs. Paggi couldn't get me to leave the library so she called the principle to come and get me.  I've seen him but I don't know him so I stopped screaming but refused to go the office with him because I didn't feel safe.  They let me pick a friend to go with me and I went.  Mom came to get me and saw me standing alone, crying and shaking, while the principle just stood there looking at me.  The teacher said that they didn't know how to comfort me....so they just did nothing.  It was horrible and really scary.  The ride home was worst than last week and so was my recovery time.  Mom's calling a meeting with the school for next week because the intensity of my meltdowns is increasing and so is the frequency.  Someone's dropping the ball.  Like mom's friend Emily said, " there's a way to defuse a potential bomb, they're just cutting the wrong wires."  Mom and dad are pretty upset but at the end of the day they know i love school so they're more motivated to stop the problem than to kick some butt.....for now.

There's so much more going on but I'm tired and I'm typing this on mom's tablet because the computer died so its slow going to type.  We'll fill you in on the rest next week.

Xoxo
Safi

Make sure to turn up your volume and look hard for speed racer, Safi!!


Beans, baby!!



Boy what a week!  Since mom's really tired and I have to have her help using the computer I'll keep this brief.

Safi stopped wearing diapers and is in big girl undies full time, the theme at school didn't change like it used to every month in her preschool class, there was no school Monday, and she was coming down with a cold so she imploded.  Monday she did ok at school but afterwards she had a total meltdown at the park.  Mom wasn't able o get her buckled in to her car seat because she's stronger and bigger than she used to be.  Mom had to drive home with Safi pulling her hair, hitting her, and hitting her her own head into the car window.  It was horrible.  Tuesday she got off to school fine but by 10am mom got a call from the school saying she was in a complete meltdown and they needed mom to come get her.  Luckily the other kids were at recess because it was pretty bad, lots of screaming, crying.  When mom had to take her to the car she went ballistic and totally lost it.  Again, no luck getting her into the car seat as she would get a death grip on mom's hair and knee her in the face every time mom made some headway.  It was really scary and I didn't really understand what was going on so I kept screaming at mom not to hurt my sister.  Pretty miserable couple of days.

Mom kept Safi home Wednesday because she had a slight fever and the break did her good and she had a great rest of the week at school and at home.

I had a good couple of days at school but by Thursday I was coming down with a cold.  When I get sick I get energized....and mean.  So, I've been kind of a butt to be around.  As of today I'm feeling a lot better and am starting to come back down.

Mom consigned a bunch of our old clothes and got us some new clothes, some toys, and a bunch of board games so we had a really fun weekend.

Now mom is burnt out and wants to go to bed so that's it for me.  Signing off!

Peace
Nixi

A dramatic week and an even more dramatic weekend.

It started on Monday when Mrs. Paggi asked to talk to mom after school.  During writing I was getting upset about something and screeching "wait friends" and it was scaring some of the other kids.  Ironically, my writing was better than most of the other kids but I kept erasing over and over again.  Mrs. Paggi chalked it up to my Obsessive Compulsive perfectionism...mom wasn't so sure.  Mrs. Paggi wanted mom to give her permission to talk to the class about me being different.  Mom was taken aback because this was the first she was hearing of this and she thought she had made it clear that she needed to know whenever I was struggling so she could try to figure out why.  Mom was pretty upset because she know how important it is for me to be just like my friends.  She thought about it for the rest of the afternoon until a light bulb went off.  She remembered that I had trouble during writing last year and called my old teacher.  Without telling teacher Mel her theory she asked what I had trouble with during writing last year and Mel said it was the inability to completely erase letters from the slate when it was time to do another letter.  The image lingering would throw me off.  I mean, if you write an "m" with chalk and erase it then write a "t"...its NOT a "t" if there's still "m" humps in the background.  So, mom went out and bought several dry erase boards that could be completely wiped clean and also made a form for Mrs. Paggi to fill out daily so she could see if there were any patterns of when I may be struggling.  Well,  the dry erase board worked like a charm and I had the best day in school that I've had since I started.  Writing is one of the first activities we do so it had been throwing off my whole day for three weeks making me have little upsets later in the day that I wouldn't have had otherwise.  Indeed, the rest of the week was awesome and I had absolutely terrific days with no upsets during writing or the rest of the day and only one upset on Friday because we went to the library for the first time and it threw me a little.  I'm making tons of friends and they all go out of their way to say bye to me after school.  It's so cool.
 
It was also a really good reminder that if I'm struggling there is ALWAYS a reason, and Autism or Obsessive Compulsive Disorder isn't it.  Those things may be why I struggle with things others might not, but its NEVER good enough to chalk things up to a diagnosis and just accept that that's the way its gonna be without trying to find a cause in my environment.  Mom had talked about that with Mrs. Paggi before but this was a tangible example of the concept and mom is hoping it made an impact.

Nixi had great days at school.  She got to ride a bus down the street and back to get used to it in prep for her fair field trip this month.  She was scared but did it and realized it wasn't scary and is super pumped to ride it again.  She's made a friend and she loves painting.  Thursday was "Happy Potato Day" in her class and she got to paint with a potato, hear a book read about a potato, and even got to take a potato home!  She promptly asked mom if she could sleep with it and take it to the park...and she did.  Great week.

We went to Farley Farms again on Saturday and picked peaches and grapes.  We had a blast scratching the piglet and playing with the Farley kids.  Jonathan showed me his one legged grass hopper and even asked me to watch it for him while he helped his sister with something.  It was awesome!

The dramatic part of the weekend...our rats are sick.  Really sick.  They might die and we're hoping they wont.  Mom and dad are doing everything they can and the emergency veterinarians in our area are no help because they don't work with rats.  Hopefully they can hang in there until mom can get them to the vet on Tuesday.  Send them some good thoughts.

And that's that....happy labor day!

xoxo
Safi