A tremendous holiday week!

Christmas eve we decorated cookies for Santa with Emily and the kids, we made magical reindeer food to scatter on the front lawn, and everyone went to bed super pumped for the visit from the big guy in red.

Santa was very good to the girls this year and they were quite pleased.  Santa left gifts at both mom and dad's house so the girls had lots to open and we hit the park afterwards to play off some of the holiday hype.  The day after Christmas we hit Bravo Farms then friends Heather and Sarah came over to house sit and watch the girls because I went on a vacation to the coast.  

Girls spent the weekend with dad, going to see a movie on Friday night, and we ended Sunday with a fab dinner at a local Mexican seafood restaurant, mariachi band and all.  Some blips and mini meltdowns here and there, but all in all a really spectacular week and great lead up to kissing 2013 goodbye!  Check back in next week to see slide shows of the each girl's 2013 highlights and to read about our goals for 2014!

Sarah

When the high's are high, man, they go to the moon and back....and the low's, bottom of the rabbit hole.

The girls' Christmas dance recitals went AMAZING.  Nixi was extremely anxious backstage because it was "taking too long" before they went on, though we only got there 15 minutes early.  But once everyone was on stage they all did wonderfully.  They were totally into it and by the second night they were a little full of themselves and it shows because they made some silly mistakes just because they were feeling like superstars...and they were.  It didn't matter if everything was precise or on time, every single one of the Radiant Rubies absolutely hit it out of the park with their enthusiasm, joy, and pure sass.  Positively divine.



On the heels of three nights of dancing, with the dress rehearsal having been Sunday, the girls were bound to crash...and they did.  Safi, not too bad.  She was very emotional and just generally out of sorts.  Nixi was on the edge of the rabbit hole, here memory for all things big and small and time and space evaporating and the dementia like symptoms front and center.  Vague paranoia was setting in as early as Monday night on the way to the recital, lots of "Are you sure that's where we're going?" anytime we drove anywhere for the remainder of the week.  Thursday was her class's very small and mellow last day before winter break celebration.  All morning Nix was getting herself excited and worked up over it.  We went and got her teachers gifts, their favorite candies, made them cards, and by lunch time Nxi was able to recognize that she was "too ramped up."  She kept running into things, tripping, saying "I'm too ramped up, mom."  I picked her up after school and noticed that her face was blue from the frosting of a cupcake.  She was in a terrific mood and showed me the goody bag Teacher Candi had made for her, then she asked to eat one of the candy canes from it.  I told her she could save it for after dinner because she'd already had a cupcake and the fuse on the powder keg was lit.  By the time we got to the car she was absolutely raging at me.  I'm so mean, I never let her have anything, do anything, I'm the worst mommy ever....once in the car the tears and kicking of the back of my seat.  As we drove away, the threats "I'm going to cook you and your going to hurt so bad from the fire because the fire is going to burn you up!!!!.....I'm not going to live with you anymore.  I'm going to run away and never see you again.  I'm going to cut you up with a knife!"  By the time we rounded the bend towards the park I knew she wasn't going to be able to recover and go to the park, she started screaming "I just want to go home!"  I gathered up Safi and Twilight and we headed home.  She got it together later and the girls went to Mike's for a couple hours.  Friday morning she started in almost immediately, again after being given a boundary that I don't even remember because it was so insignificant and something that on a stable enough day wouldn't phase her.  She raged all the way taking Safi to school, Safi saying "You guys are going to ruin my Christmas party."...her class Christmas party that she had been looking forward to all week.  Got Safi off in an ok state of mind and spent the rest of the day emotionally bouncing here and there and everywhere with Nixi.  She cried, laughed, raged, and was peaceful...in minutes...rinse, lather, repeat for the remainder of the day.  At lunch time she wanted salami.  Gave it to her and micro'ed my lunch.  When she picked up her plate she asked me what I had microwaved.  A benign question any other day, but today I knew it was anything but and asked..."Do you think mommy wants to hurt you?"...Nixi: "Yes, you're doing something to my food."  I showed her my food, which was hot, and her food which was not...sufficed enough for her to eat a little.  As often happens when those with psychosis are in the grips of their illness, she is not eating very much and waking quite early. She then told me I was the best mommy ever and raved about how much she loved me....I asked "Do the people like mommy today?....Nixi: "Nope, they want to hurt you all the time."  Then she told me that they wanted to take me to their castle to be their Queen and a series of other bizarre thoughts and beliefs.  All this without skipping a beat then back to her TV show.  No more teetering on the rabbit hole edge, she was at the bottom.  The stress fractures from the week's excitement had taken their toll and she was no longer able to ignore or pay little mind to the "people" in her head who are there every single day of her life.  Think about that.  She hears these horrible things every day of her life....even when she's "stable enough".  Wow.  Of course she feels tremendous remorse after a rage episode, when she's older these will be the times when she'll be at highest risk of killing herself....apart from when she's so psychotic that she believes the "people" when they tell her that she is an angel and angels can fly.  What a life for this wee little one.  I've increased her meds back to the 1.50mg, and while she woke the next morning with dope circles under her eyes, she's slowly doing better and that's all that matters.

So, with that, I wish you all a very happy Holiday week and can't wait to let you know how our Christmas pans out.....I'm thinking its going to be amazing.  We shall see.

Sarah

Interesting week....not bad, interesting.  Both girls struggled with not seeing their dad over the weekend as he was on a trip.  So, they didn't see him for four days.  It was confusing for Nixi who has been becoming more disorganized again, perhaps due to the decrease in meds and perhaps due to the planetary alignment because at this point it seems that unpredictable and certain.  She talked about dad incessantly....."when are we going to dad's."..."are we sleeping over?"...."when did we go to dad's last time?"  While not mentioning it, the change in routine threw Safi as well because she was full of attitude all week.  While both girls have become exceptionally more flexible when it comes to routines and schedules, it still really puts them out of whack when a big change happens.

Nonetheless, Safi had a tremendous showing in her school Christmas pageant and Nixi was a tremendous audience member!  The headphones worked like a charm and she sang her little heart out.  They both did great and had a wonderful evening.  We paid for it the next day but it was totally worth it.

This weekend Mike took the girls to their dance class dress rehearsal.  It went great and despite the big stage and theater they were totally into it.  Hopefully when there's an audience on Monday night and Tuesday night it wont throw them.  Clearly, the change in schedule will, as they'll be going to bed later.  But, man.  My kids are doing a dance recital in a theater with an audience.  Take a moment to really take that in.  Such a small thing to many, but such a ridiculously huge accomplishment for us.  I'm unbelievably excited for show time.

I will be calling Davis this week to make an appointment for Nixi in January.  I'm going to ask that we do a med wash out...take her off of everything and see what that looks like.  I feel that, at this point, that's the only way will truly be able to make an informed decision about what the next move is.  She needs to be on meds, of that I have no doubt.  So, we need to see what the Risperdal was doing and the only way to do that is to take her off of it.  Perhaps its doing much more than I'm seeing.  But all I see is a kid who's meds keep getting increased because she's struggling...always trying to get her back to "stable enough" and then once she's there we lose it again.  Is it because of the illness, maturation and growth in both her brain and her body, stress levels, sleep or lack thereof?  I just can't tell at this point so I think its worth doing something radical to perhaps answer some of those questions.  We shall see.

This is the last week of school before the whopping three week winter break.  Its grueling, for parents of both typical and neurodiverse kiddos.  The first week is the honeymoon stage, everyone sleeps in, goofs off, good times.  Second week us parents throw a ton of activities at the kids to keep them engaged and somewhat structured.  The third week the kids are asking when they go back and the parents are counting down days, then hours.  Its a magical time of year, I tell you.  Make sure to come back next week to catch video of the girls' dance recital and to see how it did, or did not, effect our week!

Sarah

Another great week!  We're heading into the holidays on a really great note.  It's exciting and simultaneously disturbing.  Waiting for that other shoe to drop.

Nixi remains quite psychotic.  So, stay with me here, I decreased her Risperdal from 1.50mg to 1.25mg.  These aren't tic tacs and no one saw any change with the increase.  She said she felt better at 1.25mg, so 1.25mg she shall have.  She continues to hallucinate daily.  The "people" in her head are always there and this week I learned of the "creepy creatures".  They are different than the people, they sound different, and they are discretely mean and macabre.  Apparently they are not new on the scene, she just never mentioned them before this week.  Her and I were playing our balloon dance party game where we bat a balloon back and forth while dancing to music when she suddenly exclaimed, "Mom, I'm scared.  The creepy creatures in my brain said they're going to eat the world and all the houses."  We talked about it for a minute, "Well, Nix, they say a lot of things and they never happen, right"..."I guess so, mom", then continued our game.  I'm working with Nixi on doing her own reality testing.  When the people say something, or the creepy creatures, we talk about what they've said and whether what they say is likely to occur.  We also talk about her visual hallucinations and that, while scary, they have never been able to actually touch or harm any of us yet.  I say "yet" because she has had tactile hallucinations, or hallucinations that involve physical sensation, but they have yet to be harmful.  She's been doing pretty well with the reality testing so I told her this week that neither her sister nor I would be accompanying her into any rooms in the house, as she generally requires an escort.  We talked about the fact that her illness is lifelong and that she needs to learn to coexist with it so that she can be independent and do and be anything and everything she wants to be.  She is scared but either Safi or I remind her as she runs as fast as her little feet wil carry her down the hall that "nothing happens."  Mid week, the same day as the creepy creature incident, she was demanding that someone go with her into the guest bedroom to get some ponies.  When I reminded her that no one would be going with her and that nothing happens she cried, "Yes it does.  I'm going to explode.  You want to destroy me and fire me with fire!"  I hugged her and assured her that I did not.  She whimpered back, "You want to cook me and eat me."  I told her I did not, she wouldn't taste very good, and I'd miss her if she was gone.  She ran and got the ponies, proudly shrieking, "I got 'em myself, mom!"  And that's what needs to happen.  Nixi needs to experience these small victories over her brain in order to maintain clarity and insight into her illness, as well as just live a full and complete life.  So, we will continue to work on this.  I'm also working on encouraging her to tell other people when she is frightened.  She continues to tell only me, always after the fact, when something at school or dad's house scares her.  I tell her that I cannot help her after the fact and that she must trust the adults there in the moment to keep her safe and help her work through her fears, but it remains unchanged.  After the new year we will head up to Davis.  I have a radical option I'd like to discuss with her psychiatrist.  More on that at a later date.  But we DID manage to make S'mores over in the fireplace one day before school...

Safi had a wonderful week.  School was great, good times at the park, and she is extremely excited about the upcoming school Christmas show and the girls' holiday dance recital.  Last year she struggled during the school Christmas production because of the giant speakers they have blaring music for the kids to sing to.  So, this year she's been practicing in class with her friends with cute penguin ear muffs on.  For the actual show this Tuesday night I will transform our real sound canceling headphones into "ear muffs" so she can enjoy being in the show.  This weekend the girls have dress rehearsal for their dance class Christmas show.  They'll be performing in a real theater and Safi is very excited...Nixi, nervous.  Dad will be taking them to dress rehearsal so I'm hoping the novelty of that will distract from the nerves and add to the joy.

The girls had a blast helping Zoey celebrate her birthday early with a princess party this weekend.  This is the month of special birthdays.  The girls called and wished their Aunt Cory a happy birthday which all parties involved got a kick out of.  Tuesday is Emily's birthday...I've got some surprises up my sleeve for that one because she's just too damn special to not be celebrated like a queen.  And Nana Cummings has a birthday coming up on Friday.  All of these December babies in our life.  Our family...by blood and by heart.  Adds so much fun to an already festive season!

Looking forward to what is sure to be a winter whirlwind of routine breakers, engagements on school nights that kill our schedule, and hopefully a ton of fun and delight along with the given meltdowns and struggles.

Sarah
P.S.  Spell check on Blogger had some weird error so if u catch any typos, keep 'em to yourself!  :)

Christmakkuh Day 2.....

What a great week!

The girls had a really good time at dad's house Monday-Wednesday evening.  Heather, our behaviorist, went by Mike's house Wednesday morning and helped him put up a dry erase schedule like we have at our house and helped trouble shoot any issues they could think of.  But all in all, the girls had a great time and by the time I saw them Wednesday evening they were significantly more stable and in a better place than when they do one night over nights.  Nixi was frankly psychotic, hallucinating, tilting her head back and half closing her eyes to only focus on me and not the visual hallucinations of "bad guys going to eat her" while we chatted, but still "stable enough" and that's just our life.  Nonetheless, it was a relief that they were in a good space and that led us into a really peaceful and wonderful Thanksgiving!  My trip to the Sequoias was relaxing and rejuvenating.  We were all in a really great place for Turkey Day.

First thing in the morning Safi asked for the Thanksgiving poem they wrote in school and proudly recited it for me and sister.

During the day we made baby snow owls out of pine cones from my trip and hit the store because Nixi decided she'd like scrambled eggs for dinner.

Safi had a few mini meltdowns over some attitude issues but was able to get it together and apologize on her own for being a butt.  After quiet time the Safi wrote both her and Nixi's lists for Santa.  It was adorable, "So Nixi, what do you want from Santa?"..."Oh, that's a good one!  Anything else?"  Very sweet.  We all ate together at the table...Safi with her quesadilla, Nixi with her eggs, then quesadilla because she had to change her mind again, and me with my corned beef and veggies.  Afterwards we put up our tree, built a fire, and danced to Alvin and the Chipmunks music courtesy of DJ Safi and her tablet.  It was just all really lovely.  The next day we hit the dollar store and bought a ton of Christmas decorations and spent the day decorating the tree and anything that didn't move.

 Ok, maybe we also decorated some things that did move....

The girls spent the weekend with dad, staying over both Friday and Saturday nights.  So far so good.  They came back tonight excited about their first Christmakkuh gifts and seem to be in a good place.  Our Elf on the Shelf made his grand entrance at dad's, taking their Santa list back to the North Pole and leaving Safi Legos and Nixi a Minnie Mouse vacuum cleaner.  Update:  Just put them to bed and they were pretty wired.  I'm hoping that tomorrow isnt a crash and burn day as they'll both be in school.  We shall see.  But I still see an improvement over the one night a weekend at dad's so I'm optimistic that they'll have a great day tomorrow and a good week overall.

Hope you all had a wonderful Thanksgiving and kick off the holiday season!

Sarah

This is going to be brief post.  Both girls have been sick, first stomach bug and now upper respiratory.  I've not managed to avoid getting mild forms and its been a long week.

Safi had an outstanding week this week.  She was class helper, is excited about two new students in class, and she racked up a ton of points for her class on Friday's Advanced Reader Pajama day.  She lost her second front tooth, though not without drama....Emily's husband Josh whipped a $20 bill out of his wallet and had her look up and yanked it out, sort of.  She started to wince and he lost his grip so it was dangling by a thread.  She cried, then went to over by herself and pulled it out...then asked for the money.  I told Josh no way because she didn't keep her end of the deal and let him pull it.  She was ok with that and the tooth fairy made a visit to dad's house.

Nixi had an interesting week.  She was "stable enough", which includes periods of mania where she loves everything, everything is fascinating and amazing, and she literally dances through her day...but the psychosis never leaves and the slightest thing can tip the scales and send her to the "less than stable enough" side.  That's our "normal", of note this week was that she was exceptionally confused and disorganized about time, place, sequences of events, etc.  She asked that dad have a calendar and a schedule at his house.  This week I'll be going on a brief trip and Heather, our Behaviorist, will go to Mike's house and try to help him essentially recreate what we have at home.

Both girls continue to struggle with the transition from dad's to home.  Mike has been taking them to buy a toy every weekend so that they'll have toys at his house.  The problem with this is twofold.  First, they want to bring the toy back to my house.  Second, its exactly why we started Christmakkuh in the first place, the girls love to get new things but they can't handle the overstimulation of it so it has to be doled out in small bits.  Well, this weekend Safi finally cracked and had a meltdown with dad and sister at Target because she had already gotten a doll at Big Lots but then wanted another toy when they went to Target to get Nixi something.  Too many choices.  Big Lots is overwhelming enough and Safi ALWAYS has buyers remorse.  So by the time they got to Target it was doomed mission.  But Nixi got her toy and I assume it wasn't too bad because I wasn't told otherwise.  When the girls got home Nixi was really clearly visually hallucinating.  she kept tilting her head and half closing her eyes when she spoke to me.  I asked her what she was seeing, "Bad guys, they want to eat me."  So, in preparation for my upcoming trip Monday-Wednesday, the change in routine because those are extra days with dad, and the week being different because of no school...I increased her Risperdal again.  It was the right thing to do, to try to increase it to help her maintain "stable enough", but its disturbing how easy its becoming for me to do it.  I used to be in absolute agony over increases.  I'd do them in small increments, terrified of side effects.  Last night I increased by a full tablet again.  That's okay, its what I'm supposed to do by prescription.  But, man, it wasn't a hard call and that's scary.  At the same time, I think its part of acceptance.  Acceptance that this is what it is, this is what our life will be, we'll deal with any negative repercussions when/if they occur, and she just needs to be okay.  So, she is currently taking 1.50mg of Risperdal and I imagine I'll keep her at that dose for the remainder of the holiday season unless we need to increase again.  I will say this, "stable enough" was the goal and for the most part we have that.  This increase was more prophylactic than anything else, as is common practice when a potentially exciting or anxiety provoking event is going to occur for someone with psychosis.  So, maybe this is me living what I said in a previous blog...accepting and just rolling with it.  I hope so.  Because I've not checked out or gone on auto pilot, I'm still here...thinking, researching, reading...but I'm also just trying to live.  Its the only thing that's fair to the girls who know no different.  I can have pain, guilt, grief, but that shit is my own...they don't own that and I hope that I can keep myself together enough that they never will.

So, this Thanksgiving season I am thankful for many things.  I am thankful for friends, family...both blood and chosen, teachers who care about my kids and me, doctors who are not only infinitely wise and gifted but also caring and empathic, our many critters who love us onconditionally and keep us grounded, this blog that helps me find my center each and every week, anitpsychotics and antocholinergics, SSRI's, and corned beef.  Yep, you read that right.  Nixi and I don't care for turkey and Safi is on a quesadilla kick so this year we're giving the turkey the bird!  We're going to eat what we like....corned beef, new potatoes, carrots, and cabbage!  Nixi was beside herself with joy, Safi said "I don't eat corned beef, either", and Emily is going to give me her turkey carcass for my turkey soup.  Life is good.  May you all have a wonderful Thanksgiving filled with the food of your choice and much peace, love, and laughter.

Sarah

Ying and Yang...shadow cannot exist without light.

Parent/Teacher conferences were this week and Safi is doing spectacular.  She is above where she should be in most areas and her abstract thinking inspired awe in me and her teacher.  For a child her age her abstract thinking is quite good, a kid with autism it is tremendous.  Academically, she is doing wonderfully.  Socially she is a work in progress.  She continues to struggle with waiting her turn, not pointing out the faults in the logic of others (teacher, included), and coping with disappointment.  Those are long term skills to work on, so there were no shockers at the meeting.  On a whole, her light shines bright.  Unfortunately, due to having no school on Veteran's Day  and early release the rest of the week because of parent teacher conferences....the shadow hit us hard midweek.  

On Wednesdays Safi go to speech therapy at school.  She loves it.  She gets to hang out with kids in other classes and grades and loves her speech teacher.  That said, it pulls her out of class and she is bound to miss some cool things.  They have been creating shapes with gumdrops and toothpicks, they then tell you how many vertices there are, etc.  That day when Safi got back to class she wanted to take an Advanced Reader test.  She did, but then missed learning how to create a rectangle using 4 gumdrops and three toothpicks.  When I arrived to pick her up she was in class going through a bunch of papers she was supposed to put in her backpack.  When she finally had them assembled to her satisfaction and she came out of class with the gumdrops and toothpicks in hand I could tell she was going to lose it.  Teacher told her that mom would help her figure out the secret at home (breaking one toothpick in the middle to make the two shorter sides of the rectangle).  I could tell that Safi needed to complete this task literally at school so I got down on my knees and began to help her problem solve.  She was already extremely emotional and easily frustrated.  I had to move her on.  She was crying as we walked to the car and she snapped at Logan not to look at her.  Once we got in the car I asked her to assemble the rectangle, and she did.  Then I checked her lunch and she had eaten hardly anything.  When the kids eat at least half of their lunch they get a small candy on the way to the park.  Safi wasn't going to get a candy, and that was the last straw.  She started getting louder and louder and I told her that if she could not calm down she would not be going to the park.  We rolled up to the park and I had Logan get out of the car and meet Emily and the other kids.  Safi was still freaking out about not getting a candy and I told her she had one last chance to calm down or no park.  All she heard was no park and KABOOM!!!  She began throwing her body back and forth in her seat, a la 3 yr old Safi, and had completely lost it.  I locked the door and pulled out of the lot to go home.  She got up out of her seat and grabbed me.  I pulled over and had the genius idea to tell her something that I had read other parents telling their children from my parent support group, "If you're going to take a swing at me, go for it, and know that it will be the last swing you ever take at me."  Yep.  I said that to a concrete thinking, Classically Autistic kid.  Bets on what happen next?!  You guessed it, she balled up her first, reeled her arm back, and POW!!!  She clocked me in the face.  I was stunned then even more stunned that I was stunned at all given the fact that I had, for all intents and purposes, just given her a direct order to hit me.  She was stunned, too.  And she sat.  She sat for the rest of the ride home.  She walked herself to the bedroom and once the door was closed proceeded to scream at the top of her lungs for a solid 20 minutes or so.  She eventually got it together and I showed her a list of the reasons why she was not given a candy in the car and why she was not allowed to go to the park.  She was calm enough to appreciate the visual aid and a half an hour later when we went to pick up her sister from school she spontaneously said, "Mom, I'm sorry I hurt you and said mean things to you."  She is a remarkable kid.  No Applied Behavioral Analysis taught her to feel sorrow at the thought of hurting someone she cares about.  No Behavioral Interventionist gave her a candy for apologizing to people.  Safi apologizes from the heart because she feels regret, she feels shame, she feels sorrow.  Safi feels.  All people in the spectrum feel, Theory of Mind deficit or not, they feel.  We go to these great lengths in early intervention to create these scripted, rote responses to human emotions and situations when what we really should be focusing on is supporting our loved ones on the spectrum's inner world and experience.  If given the opportunity to frankly be told how and what hurts others without providing the solution, they'll figure it out.  It may be clumsy and untimely, but it will be real.  That's what really matters.

Nixi had an okay week.  She's "stable enough" and that's that.  Again, the transition back from dad's on the weekend ends with a Sunday horror fest.  But here's the beauty of it.  Nixi lost it completely at Emily's house where we try to do Sunday family dinners when we can.  After we left Em texted me that her son Logan had just said, "Having Nixi, Safi, and Sarah is really nice."  We're a family pieced together by love and shared experiences....experiences that we have gone through together.  We are lucky.  Luckier than most.  Psychotic as a hell or not, Nixi is a tremendously lucky kid.  We've got a crew that always has our backs and doesn't bat an eye because we're family and that's what family does.  We are all so used to each other and all of our idiosyncrasies that they just melt away and only the great stuff...the laughs and the love...are remembered at the end of the day.  Truly awesome.

Sarah