WOW!  What a week!  Ill keep this entry short and sweet because its Easter Sunday and I want to play with my goodies!

We had a terrific visit with Grandpa Seifert and Aunt Becky.  Grandpa just thought we were the bee's knees and Aunt Becky was so fun, she got on the ground with us and played like she was one of us!  It was just wonderful!  We went out to dinner, hit Bravo Farms and the park, and even took Aunt Becky to the JBF sale with us!  It was just a really wonderful visit and we already miss them!

As is usually the case with visits, Nixi and I are currently recouping from the excitement and change.  We did pretty good with the no school, spring break deal because grandpa and Aunt Becky kept us busy but it still takes a toll.  Nixi is having a very difficult time going to sleep, seeing colors and feeling afraid to close her eyes.  She's has a great deal of vague paranoia and is on high alert and unable to go anywhere in the house alone or enjoy some of our regular TV shows due to fear that something is going to get her.  I'm pretty emotional and, while I'm coping better than Nix, it takes very little to send my into a crying jag.  Ending the week with Easter was extremely exciting and extremely overwhelming.

All in all, though, it was a great week and we both did much better than we thought we might.  So, we're pretty proud of each other and I know mom and dad couldn't be more pleased!

Back to school on Tuesday which also happens to be World Autism Awareness day!!  Tomorrow mom and dad will start preparing to "Light it Up Blue"....do you have your blue bulbs yet?!  If not, don't worry...you can light it up blue the whole month of April!  You can also print this image and display it in your window so everyone knows that you support Awareness and that you support us!

And remember to wear blue on Tuesday to show your support!!!

Hope you all had a great Easter!  Dad's birthday is also this week, on the 4th.  We want to wish him the bestest birthday ever.  We know its rarely ever easy, often times heart breaking and/or frustrating, draining (emotionally and physically), and we probably don't say it enough...but we love you the most and we're just awfully glad that you're our dad.  Happy Birthday!

Make sure to check back in next week when mom and dad hijack the blog for the month!  I'm sure mom will have some interesting news to report from my upcoming IEP.  Have a great week!

xoxo

Safi

Our visit!


Easter Extravaganza!

At the park we all worked together to make an ant playground!

Then Nixi found a ladybug and mom put it in our creation and we got to watch

it crawl up and down on the sticks and things!

My new snazzy bed from the consignment sale!

We had a pretty eventful week with school egg hunts, new stuff from the JBF consignment sale, we handed out our birthday invitations, and dad even got off work early twice and met us at the park!

Safi had a great week at school.  She got her third 100% on her spelling test even though it was a rough road studying for it.  This week it was 9 words instead of 4 and she got three wrong when she practiced with mom.  That upset her greatly and she struggled to come back from it for a good half hour.  But she practiced writing the words and come test day she aced it!  She had a great Easter egg hunt with all of the kindergarten classes.  Dad stayed home from work that day and was able to go early and be a parent helper hiding the eggs for the kids.  Safi had a blast and it was a wonderful day!

I've been having a funky week since Tuesday.  See, I don't like different and there's just a lot of "different going on.  I had my field trip last week, Safi had two early release days this week, there was my egg hunt at school and a substitute teacher, Grandpa and Aunt Becky are coming, Easter, all our birthdays, and the party.  Its just a lot of different.  So, I keep telling mom that I don't like different...even the small things like dad doing something different from mom.  Right now, even the little things are sending me into a tailspin.  Mom and I talk about different and that some things that are different are wonderful, like grandpa and Aunt Becky coming, but at the end of the day my head just tells me different is different and that's scary.  So, I've had a little paranoia at the park and I'm seeing some scary thing, too.  I'm quick to rage and quick to weep. Luckily, I've been able to snap out of it here and there so I'm not all the way down the rabbit hole....

Twilight is doing really good and we love her so much.  I learned how to walk her all on my own on Monday and she walked right beside me.  Winston, our other dog, is enjoying her company and the cats are pretty sure that they could eat her if they wanted so they're good.  Its kinda like she's always been here.

So, wish me luck for this week and make sure to check back to see pictures from the visit and to see ho wit went!

Peace
Nixi

Nixi and I got a new dog!!!!  We named her Twilight Sparkle (from My Little Pony), she's an Affenpinscher mix, and she's just dreamy.  We adopted her on Saturday from Central Valley Rescue Railroad.  Mom thinks she's funny looking but I say she's beautiful like a princess.  So far she likes all of our animals and all of them are ok with her.  Nixi and I take turns walking her and mom is going to sign her up for obedience training and I get to do the classes with her!  It makes me feel really proud of myself when I walk her and she follows my directions.  I can't wait to take her to my school to show her off to all of my friends!!!  There's the big news, no on to the weekly grind.

I had a great week at school ending it on Friday by asking my friends if I could play with them and asking them what they were playing.  Mom has been drilling me on that at the park for the past few weeks and its totally paying off!  My teacher was super proud and so was mom!

Nixi had a good week at school.  She had a field trip to the local college's farm school and got to pet an Arabian stallion and a baby sheep!  Mom also got to observe how she behaves with her classmates and was saddened to see that she was often times rough and no teachers corrected her behavior.  She was also very rude to the teachers on three separate occasions and they just let it slide.  Mom works really hard on these two things specifically because if Nixi doesn't curb these behaviors she will continue to do them indefinitely.  Its not something she's going to outgrow and mom doesn't want her to become a "management problem" at school.  Ironically, mom's observations where on the heels of an ambush of sorts by the school psychologist on Tuesday.  The school psychologist told mom that in Nixi's upcoming IEP they are going to terminate her speech therapy, stating that her pragmatic speech and social speech was close to age appropriate.  Mom asked her with how many people is being appropriate and the psych admitted its only with one other child in her class.  Then, the bombshell, the psych said they were going to suggest mainstream preschool for Nixi next year.  That's a classroom of 22-24 kids.  Uh, ok, she's in a classroom with 8 kids and only appropriately engages with one...and that's debatable.  Mom and dad had already decided that, after the two years of special services preschool, Nixi would not mainstream into a kindergarten class like mine.  Nixi is lively, fun, silly, fun to be around....and often times out of control, in her own world, and easily overwhelmed.  Not only do the chances of her having a massive psychotic break that she never comes back from increase in direct proportion to her stress levels, but it would be very easy for her to pegged as the difficult kid with behavior problems if she's put in a situation that she can't handle.  They seem to be basing this recommendation on her extremely limited social functioning but expansive verbal repertoire.  Bad mistake.  None the less, on April 5th mom has to go into another IEP ready for battle.  This time, its all out war.  These people think they've seen mom in warrior mode over me....they haven't seen anything yet.  Mom is protective of me, worries a lot, and is constantly afraid of my spirit getting squashed.  That said, she's game for trying new things even if its hard for her to even consider that I may fail and be hurt in the process.  This is a whole other ball of wax.  This time mom and dad are fighting for the rest of Nixi's life.  Many kids who experience psychosis, more commonly at the age of 7, end up going so far that they NEVER come back.  Meds help them keep one foot on the ground, but they are forever lost to severe mental illness.  Nixi is baseline right now.  She continues to hallucinate weekly, etc. but its manageable.  Push her over the edge and she very easily slips into an unmanageable place.  Mom is very conscious to not wave her degree around in IEP's.  She goes as a mom, first and foremost.  Autism is something we have all had to learn as we go..and we continue to do so every day.  Psychosis is what mom knows.  She created a training course for police and emergency responders on how to recognize active psychosis and work with it to keep both suspect and emergency personnel safe.  This is quite literally her area of expertise.  This is NOT an area of expertise, let alone competence, for anyone in the school district.  They just don't get it.  So, this IEP mom is vowing no tears, no uncertainty, no wiggle room...just warrior mom.  Her and dad will absolutely not risk losing Nixi, especially since Nixi has no desire to be in a mainstream class.  She is absolutely thrilled at the idea of getting to go to Teacher Mel's class next year just life Safi did.  She is a genius, the state says it is so.  That's wonderful....and many kids in special ed are geniuses, whether staff are skilled enough to recognize it or not. She is also extremely fragile.  Where I might be brittle, she is downright fragile.  A light wind on the wrong day can know her on her butt.  Challenge her....yes.  The challenge next year will be being in a less structured class (you all may remember Teacher Mel is pretty fly by the seat of her pants), and recess is with the mainstream classes so lots of kids for a short duration.  That's plenty challenge for a kid who went completely psychotic 8 months ago and remains to float in and out of our reality.  So, IEP team...I wish you luck.  You're going to need it!

We had a great St. Patrick's Day.  We set a Leprechaun trap the night before and in the morning the trap had gone off but was empty.  However, that Leprechaun lost his high top tennis shoe on his way out!!!  We also found his pot of gold!!!!  It was awesome!!!  Then, we got to do our bounce house clubhouse.  Emily, Daddy Josh, Logan, Zoey, Josh, and baby Addison came over too.  It was super fun!

So, great week!  We're having fun with the new addition to the family and can't wait for lots of exciting Easter activities at school!

xoxo
Safi

Leprechaun shoe....

Good grief!  First Safi has early release all week and my naps got screwed up, now we lose an hour of sleep?!?!  What the heck???  I'll start the blog by saying that the loss of sleep all week did not agree with me.  By last night I was struggling to fall asleep, afraid to close my eyes, and crying because I was seeing things.  This morning when it was time to comb my hair, and it was tangled as it is every morning, I just lost it.

Now, every morning is a struggle for me and Safi when it comes to combing our hair.  Safi hates the way the comb feels if it drags against her scalp and I just hate it all.  We both scream at mom EVERY morning, I hit as well.  This morning I was tired, and while my mood had been light and silly initially that all changed when mom started to comb my hair.  It ended in this.....


Safi was upset because I was screaming and because we weren't going to get to do our bounce house clubhouse because we had both been out of control and kind of mean.  She ended up pulling it together after 20 minutes or so and got to go outside to play...where she continued to weep and say that she missed me.  I continued my rampage for about an hour.  At one point mom had to lock me in the bedroom to calm down on my own because my screaming literally caused her ears to ache.  I then proceeded to kick the door with my feet and bang my knees so hard on it that it bowed and my knees are all black and blue.  Mom stayed calm and eventually I calmed down enough to go outside.  Once outside I continued to scream and cry until I got distracted by an ant hill and instantly flipped into happy Nix.  Safi told me she missed me and we played together while mom and dad regrouped.  Later we took baths and mom cut my hair.....

We played dress up with daddy and Winston and had a really good evening.

The week was rushed but ok.  We got to go to Safi's school Book Fair and that was awesome.  I bought a Jasmine princess book and Safi got some Barbie books.  We went to our favorite Mexican restaurant with Emily, Logan, Zoey, Josh, and Addison mid week and it was awesome!  We got to go to Burger King on Friday after school to play in the play structure with Logan, Zoey, Josh, and Sophia from Safi's school.  And on Saturday we got to meet up with Emily, Addison, and Josh at Del Taco for dinner and to play in the play structure.  So we had a pretty fun week with lots going on.

We've decided to throw a joint birthday party this year at the park.  Mom and dad are going to put on a carnival for us and our friends!  There's going to a lady that does balloon animals and bubbles, popcorn, games, prizes....we are beyond excited!!!!  So, the next weeks will be spent focusing on getting ready for that, for the JBF spring consignment sale, and for our upcoming visit from Grandpa Seifert and Aunt Becky! We have some really great things to come.  I'm sure there will be bumps along the way...but its always worth it when it end well!

Have a great week!

Peace
Nixi

We had a warm, fun week this week.  The weather has been perfect for lots of extended park days and playing outside.

Safi had a great week at school.  Her class celebrated Dr. Seuss and they're getting ready for a book fair at school this week.  Mom says she'll take us both and we can buy a few new books!  

I had a good couple of days at school.  I'm working with a new OT because my regular one is out with her new baby.  My new OT is nice and pretty fun, so I'm ok with that.  I've been doing this strange sort of half closing my eyes things this week.  I'm doing it a lot.  Mom asked me if I was having trouble seeing or if I had a headache or eye pain, and I said no.  Its not really squinting, its just half closing my eyes.  When mom asks me why I'm doing it I say, "I don't know", in a whiny, upset voice.  (Note from mom:  I tried doing this, myself, to see what it looks like and it makes everything fuzzy and less focused.  I posted this in my online parent support group of families with kids with psychosis.  I got a response from a woman who's daughter, Annabelle, is very similar to Nixi in many way...though Annabelle is a teenager now.  She said that Annabelle used to do this frequently before she was on meds to try to obscure or block out visual hallucinations.  So, we are assuming that this is the likely reason.  We will give her the Tumbling E eye exam at home and book her an appointment with the eye doc if she struggles with it...but it doesn't feel like a typical vision problem.  It looks like a way of coping with her symptoms.) 

We got to help our friend Logan celebrate his seventh birthday on Saturday!  It was really fun.  We picked out our gifts for him on our own and were sooo excited to see him open it.  The theme of his party was dinosaurs and a neighbor a few houses down brought his pet bearded dragon for us to pet!  It was so cool.  Safi really liked bouncing on their trampoline, it was her favorite part.  But later that night she told mom that the three boys (none of which were Logan) that were in there with her were hurting her.  They were throwing big balls at her and then wrestling them away from her when she grabbed the balls.  Sadly, she was enjoying herself so much with the jumping up and down...a self regulating activity we both use...that she didn't tell mom what was going on at the time because she was afraid mom would ask her to get off.  Mom felt really bad.  The trampoline was on the side of the house so, despite checking in on her, mom wasn't there the whole time to see what was happening.  Nonetheless, the trampoline and seeing Logan open her present were Safi's favorite part.  I liked digging for dinosaurs in a sandbox of beans and eating ice cream!

So, we had a good week.  We're decorating for Easter and spring and getting ready for some possible rain this week.  We sound awfully boring this week...that's a GREAT thing!  :)

Peace
Nixi

Check out the singing Win!