Safi had her last day of kindergarten on Tuesday.  I got to go and be one of the mom helpers for their activity day and it was a blast.  They did bubbles, the local fire station put on a demo, parachute play, dancing, sponge relay, beach balls, lots of kindergarten fun!  Safi had a great time.  Unfortunately I had to leave after the activities to be with Nixi so Mike could go to work and Safi told me later that she missed me at her party.  Still, so happy that I got to be there for half of the day.  We are so unbelievably proud that of her.  She met all of the typically developing academic markers, even excelling in some areas.  They had all of the kids make a book about themselves and on the page where they say something that they "got good" in, she said she got good at playing with friends.  That beats the academic stuff any day, that SHE was proud of herself and felt she did a good job of making and playing with friends.  She's such an amazing person.

We spent the first day of summer vacation picking peaches and apricots at J&K Farley Farms with Emily and the kids.  It was gorgeous.  We snacked and played under the huge walnut trees and picked some great fruit.  The kids had a blast seeing where their fruit comes from and being active participants in its harvest...the cool swing set and petting zoo didn't hurt, either!  Great way to ring in summer.

Thursday we had a big send off dinner for Safi's best bud, Sophia, who is going up north for the summer.  It was a great time but we're going to miss her so much.  Bittersweet.  August can't come quick enough!

Friday was Dreamnight at the Zoo.  It was hot, like 104 degrees hot but we had an amazing time.  We got to see everything we wanted to see and do everything we wanted to do.  It seemed a little less crowded this year but I saw a number of children and adults there with developmental disabilities and that made me feel really good.  Often times those with "invisible" disabilities are left out of these types of functions but this year that was definitely not the case.  The girls have been on a Fairy kick lately and it was totally magical when they turned a corner and saw Tinkerbell and two of her fairy friends.  They took pictures with them and Nixi showed them her "mama's hair horse", much to their horror.  It was really great and both girls did really well.  By the end Nixi was starting to unravel but no major meltdowns from either.  Total success!

On Saturday evening Mike was giving Safi a bath and I was hanging out with Nixi on the couch.  I asked her, "How are you doing?" and this is what she said:

Nixi: My brain is misbehaving, letting monsters take me away.

I can't tell you, it's a secret.

It wants to get it out of my head, my brain. 

ME: Why?

Nixi: Because it wants to make me dead.

It says "Go get mommy"

ME: What does it want you to do with mommy.

Make her dead, and I say no.

ME: Does it tell you how to do that?

Nixi: Yeah, like take your mom to jail.
They want me to cook you.

ME: Sometimes or all the time?

Nixi: All the time.  (Then, as if we had just been talking about what she wanted for dinner..)Can you help me find my pearl?

So, it has become apparent that I am not as far ahead of this illness as I had believed I was a week ago when I was so excited about making a preemptive strike with the social story book.  I'm still making the book because I think it necessary regardless, but what a let down.  After our talk we began looking for her pearl and she said, "Are you crying?".  I said, "No...yes, yes I am.  It must be very scary for you to hear those things and I'm just very sorry that you have to."  She ran up and grabbed me around the waist and gave me a huge hug...then asked me to keep looking for her pearl.  And that was that.  I don't know what's more gut wrenching, the fact that she hears these horrible things or the fact that it rolls off of her because it is her norm.  I have a phone appointment with the psychiatrist next week and I'll tell him all of this and see what he wants to do.  Again we are faced with the possibility that Risperdal just isn't the right medication for her at this time.

I posted this conversation to the online support group that I'm in.  Within minutes I had my first response from a mother of a daughter with paranoid schizophrenia.  She, too, had command hallucinations to kill her mother and she started with Risperdal when she was 5.  Now, 20 medications cocktails later, she is almost 13 and plays team sports, has a few friends, and is doing very well in and ED (emotionally disturbed) classroom.  By morning I had more replies with people who have seen their children be where Nixi is and with the right med combo come out the other side of it with minimal collateral damage.  I say minimal because these same moms who wrote to give me hope and remind me that our journey has just begun and is not at the its finish also gave me a number of suggestions to keep myself and my family safe.  "If you haven't already, put all of the sharps away in a locked cabinet."  "You would be surprised what can be used as a weapon.....when X was 8 she ripped a toilet seat off of its hinges and attacked me with it."  "Put locks on your doors or get an alarm system, when my child was having command hallucinations they were also told to leave the house."...."Oh, yes, mine too.  Alarm systems are a must."  Another mother in the group posted today about her own children, having been recently stabbed by her 8 yr old who just had to 5150 (involuntary psychiatric hold).  Another mom posting today that her son had a huge meltdown this morning, the time when his meds are at their lowest potency, throwing chairs, phones, and ultimately beating his own hand bloody on a shed door.  Moments later a horrified, remorseful mess and than as quick as it came on he was back to "normal".....so, Nixi, so "Can you help me find my pearl?"  This mother said that she hesitated to post with something so "trivial" in light of what Nixi is currently going through.  She thought this was trivial, comparatively speaking.  Think about that.  If that incident is trivial, think of what her and her son's life is like on a day to day basis.  I responded to her immediately because we're all just treading water here.  Some days the waves are thrashing, some days the water is still, but it really makes no difference to the person doggy paddling in the middle of the ocean is rescue is nowhere in sight, does it?

Mike and I were left feeling extremely hopeful after reading the responses to my post.  Quality of life is what we're after.  These kids are still struggling but they DO have quality of life.  That is extremely important for us to read and I was so grateful that that's what we got.

So, that was our week.  This coming week we start our grass roots summer school, my mother comes for a visit, and we celebrate Father's Day.  I'm hoping the cooling of the weather and the additional structure of summer school helps the girls get into a routine and helps us all find a little more balance.

Sarah

Dinner with Sophia...


Dreamnight....


Nixi learns how to pump her legs!!