No post last weekend because we had a full weekend of good old fun and with MLK holiday on Monday, we were just enjoying the long break.

Right down to it.  Nixi seemed to be improving with the med increase, slightly more linear thinking, eating wonderfully, and saying "My brain is bothering me, I'm just not listening to it."  That's precisely the goal, to turn the volume down on her brain enough so that she can somewhat ignore it.  She had stellar days at school, asking peers relevant questions and waiting for their answers and her teachers were delighted.  Delusional content remained but otherwise she was good.  Last weekend she started getting very moody and easily upset by small things.  She began itching her wrists which she hasn't done in a very long time.  But most notable to me is that she has lots of leg movement at night when she's sleeping.  In the past this has mean akathisia.  Not sure if it means that now, but we see Dr. Soulier at Davis Feb 3rd and we can figure it out then.

Safi, oh my Safi girl.  So, Safi has been struggling at school to one extent or another this whole year.  Before winter break she was super excited to be off and didn't want to go back.  Since being back she has cried in class and last Friday she did something generally only reserved for her sister and I....she put her arms rigid and straight at her side, balled up her fists, and bared her teeth at kids on the playground.  At the beginning of the week she had a homework assignment where she had to write a paragraph about her best friend.  She wrote about Nixi because she said she doesn't have any friends at school.  Sister, Twilight, and I have been walking her to class in the morning since going back after winter break and despite the work her and I have done on making eye contact before speaking (as she talks to the back of people's head a lot), when she says "hi" to kids in her class they outright ignore her or move around her to talk to another kid.  They don't like her.  She's a "rule police" during class time because she wants to get her work done and doesn't understand why the other kids goof off and she doesn't understand that they hold a grudge.  When she plays on the playground she always has to win or she get upset and throws a fit.  Nobody wants to play with her.  Her teacher has noticed that its been getting worse since coming back from break and that coincides with what I thought was depression over the divorce.  I'm sure that's part of it but it dawned on me the other night that school is playing a major part in how she feels about herself and its absolutely heartbreaking.  As the kids get older and more sophisticated socially its just going to get worse and she WILL become the problem autistic kid with "behaviors."  So, we need to find a school for her where she is with her peers...other kids with special needs...and has a well trained and knowledgeable staff that help guide her through this social maze that is life so that she can thrive.  Currently, she is surviving...not thriving.  So, at her IEP (Individualized Education Plan) meeting before her birthday in April the teachers, therapists, and I must write an IEP indicating that she would do better in a more restrictive environment.  I don't care anymore, I just want my kid...my kids...to be happy.  What ever that takes, whatever you call it, whatever it means and looks like.  She did, however, get Student of the Month and this Friday we will celebrate her AND Logan, who also got it this month, at a lovely continental breakfast in the school cafeteria.

On Safi's third birthday, the day that Early Intervention exits kids and you lose the emotional support of the sweet "teachers", OT's, Speech Therapists and are handed off to the schools, I took Safi and Nixi to Bravo Farms for the first time.  When we pulled up to the parking lot she was scared and started to whine and cry that she was scared.  It was a new place she had never been before and I hadn't either so I didn't know what to expect.  I turned and told her in a calm and absolutely genuinely said, "I'm scared, too.  This is new and different and we don't know what's going to happen but we're brave and we're all together and we're going to be okay.  Now lets go have fun, birthday girl."  I put Nixi, 1 then, in a sling and Safi climbed out of the car.  Hand in hand we opened the gate and found an absolute wonderland on the other side with livestock, ride on toys, a tree house, magic.  And it was a good...no, it was a GREAT day.  I've lost me.  I've become so overwhelmed and lost in the "what if's" and worst case scenarios in the past months that I've completely lost the "me" that bravely led my girls into new and novel situations, pioneered the grass roots summer school, and effectively advocated for my kids.  I've gotten tangled in all of the different strings that I pull to try to control the uncontrollable and I'm this huge knot...and I've been sinking.  Today I painfully realized that.  So, I'm cutting those strings and untangling myself so that I can breathe, so that I can float, so that I can be brave again.

Today is a good...no, a GREAT day.

Sarah

The hotel trip was a complete success.  Started off a little dicey with Nixi struggling during the two hour drive.  I was surprised because I consider her to travel really well....as night.  All of our Davis trips are at night and that apparently makes a difference.  She was very ansty, asking if it was going to take a long time over and over and when we were about 20 minutes out I texted Emily that Nixi was losing it.  Once we got to the hotel and got checked in everyone had a chance to regroup.  Our room was on the 5th floor.  I had told Nixi the day before we went that our room might necessitate the use of an elevator and that we were trying new things in 2014 so I thought she could handle it.  She agreed...and she did amazing!  Nothing more to say, she did absolutely outstanding.  Safi was just in live with it all...playing restaurant in the room and writing our orders on the hotel notepad, "calling" from one phone to the other phone in the room, she just thought it was all divine.  We went to a local park that was super fun and the girls enjoyed a lovely dinner in the hotel restaurant, with Safi ordering Marscapone Cheese Cake totally of her own accord for dessert.  They loved heading down to breakfast in the morning in their PJ's and getting lots of compliments from guests and staff.  They felt incredibly special and at one point Safi was marveling at the huge chandeliers and exclaimed, "Doubletree rules, other hotels drool!"  

My mom, the girls' Nana, came for a visit the day we returned from our mini trip and they had a blast.  They enjoyed alone time with Nana in the bedroom playing all kinds of absurd games and laughing hysterically.  They enjoyed their time with Nana and it was a great end of break treat for them.

Unfortunately, Nixi continues to struggle.  Specifically, she suffered from some command hallucinations this week that resulted in her biting her sister one day and pulling out some of her hair another.  Safi was irked but brushed it off because that's just Nixi, at least the Nixi Safi is used to.  Nixi was absolutely beside herself with remorse.  Tonight I increased her Risperdal again by .25mg, for a total of 2mg.  See, we head up to Davis on February 3rd and clearly the talk will be about changing meds.  She is approved to go up to 3mg of the Risperdal so I figure we increase if necessary all the way up to our visit because who knows, maybe at a higher dose Risperdal could still be appropriate for now.  I'm really good at coming up with all of these reasons for Nixi not doing well....the holidays, the trip, visits, etc.  Yes, these are stressors...good and exciting events but stressors nonetheless.  I am starting to realize that these events are also just life.  Life will always have events...a magic show at school, dance class, a kid's birthday at school....and if she's not coping with them she's not coping with life.  While I don't think I'll be looking to increase her meds every time a novel situation occurs, the reality is that she's not coping well on a good day when there's nothing novel.  I use the novel things as excuses for her struggling on regular days.  I can reason this a million ways but sometimes reasoning isn't the best approach.  Sometimes the best approach is to focus on the fact that she has a brain based medical disorder that must be treated if she is to have good quality of life.  So, that's where we end the week.  The girls had a great weekend visit with dad and I just gave Nixi her increase about an hour ago.  We'll see where the week takes us.  Tomorrow its back to school, of which Safi said she thought he had a fever and couldn't go.  She does not and she is going but more evidence that her academic life needs to be reevaluated.  Nixi said "I can't wait to tell my friends and my teachers that I went in an elevator and I was brave.  That's what I'm gonna tell 'em!"

Sarah

It was a bittersweet New Year....the girls and I had a blast throwing our own New Year's Eve party, and I had to increase Nixi's Risperdal again by .25mg, for a current total of 1.75mg.  She was having intense command hallucinations to cook me and drain my blood amd the "people" were telling her to "never eat again so I'll die", and New Year's Eve day she, indeed, did not eat.  I had been noticing her food and milk intake going down subtly for about a month but I had attributed it to paranoia and thought that I could reason her "out of it."  I hadn't consider command hallucinations.  But this is not unlike during summer when the voices were telling her to dunk her head under the water in our pool so she would drown...the only difference is that I can keep her out of a pool but I cannot force her to eat.  It was really scary and sobering, the realization that this symptom could be the one that lands her in a psychiatric inpatient unit.  I always say she'll never be hospitalized as long as I can physically control her, keep her and others safe, but I hadn't even considered a situation like starvation.  A reminder that nothing is off the table or the radar of this illness.

The great news is that the increase did a world of good.  Nix is eating better, saying the people aren't telling her not to eat, and she says she is doing better and that appears to be the case.

On New Years Eve the girls made a list of things they want to do in 2014:
Go to a hotel
Go on an airplane (Nixi...Safi not so down with that yet)
Go on a train (Safi...but Nixi is cool with it)
Go to the beach
Legoland
Have a slumber party/sleepover
Safi: Learn to do back flips
Nixi: Climb a tree to look for squirrels and birds if they're big enough
Hug more
Yell less
Try new foods like chips with hot sauce, hamburgers, and salad


New Years day was absolutely magical.  My brother and his wife had given the girls gift cards to Build A Bear Workshop for Christmas so we hit the mall.  This is the first time we've been to the mall in over 4 yrs.  We got there right after opening and it was a a ghost town...perfect.  The girls were beyond excited and the Build A Bear employees made sure it was a totally wonderful experience.  The girls happily bounced out of the store with their freshly made ponies.....and there it was...mere steps in front us in the food court...a train!
We bought our tickets and rode the mall train around the south end of the mall and the food court.  The girls were beside themselves, Nixi exclaiming, "I can't believe we're on a TRAIN!!!  Safi, your New Years wish came true!"  After disembarking we ate mall food for lunch and had an absolutely grand time.  It was really awesome.

Monday night we are taking a mini overnight vacation in a hotel, Safi is extremely excited.  My mom is coming up for a visit the middle of the week, and the girls get to spend all next weekend with their dad...they're preference over one night...so it looks like a fun and busy last week of winter break then back to the school grind.  I'll need to start touring class rooms in the district to start figuring out what school is going to look like for Nixi next year and I am also going to look into some alternative options for Safi as well...more on that later.  I have an appointment for Nixi up at Davis in the beginning of February as well as a psychiatrist appointment for Safi med February where I plan to discuss her depression regarding the divorce.

So, Happy New Year.  My hope for 2014 is that Safi and I can get back to the place our relationship was before she became aware of the divorce, that Nixi will have longer periods of "stable enough", and that we all will smile, laugh, dance, fall into a giggling heap together on the floor, and hug even more than we did in 2013.  My goal for 2014 is to find the appropriate adjunct therapies for both girls so that I don't have to be a clinician in my day to day dealing with them.....I just want to be their mom.  What are your hopes and goals for 2014?

Sarah

This blog is dedicated to my grandpa, Gerald "Gel" Cummings, who passed shortly after Christmas.  The smell of a pipe, the beauty of a hand carved bird, and the mumble/chuckle of a dashing and ever dapper man will live forever in my heart and my memories.

Safi's 2013:


Nixi's 2013: