Safi's IEP was a horrific flop.  Despite having texted and emailed members back and forth with the specific school I am interested in AND discussing that this IEP should be tailor made to include all of the features it has to offer because every single one of them is a service that Safi needs....crash and burn.

Within the first 5 minutes of being in the room I repeated what I had been saying for the past three weeks, "So, today we go for 'more restrictive envicornment'".  The school psychologist said, "Yeah, when we get to the last page we'll talk about the wording because it gets funny."  An hour and a half of my life later that I'll never get back we turned to the last page....which recommended "least restrictive environment" and essentially to maintain status quo. Not. Funny.

As you're probably already assuming, I went ballistic.  I was professional and appropriate but exceptionally enraged.  What had been the point of the prep work?  What had been the point of getting in touch with the members ahead of time to make sure we were all on the same page?  What was not understood that if this IEP were not done appropriately, Safi's schooling would not be paid for by the district that we move to?  And there, my friends, lay the problem.  You see, whatever the school district recommends they have to provide.  And, as the school psychologist put it, "We can't recommend services that we don't have and we don't have these services."  Uh, yeah, that's one of the reasons why we're moving.  But if we were to not move for some reason the IEP is a legally binding document and they don't want to be on the hook for providing the services that Safi and other kids need but they don't have.  So, I reminded the school psych that, legally, if Safi needs a service and qualifies for it, they HAVE TO recommend it and they HAVE TO either find a way to provide or pay another district or entity to do so.  She tried to do some damage control, tried to change what she had just said....and then assured me that they were all mother's in the room and that they understood that I wanted the "Cadillac of services, but the law states that we only need to provide the minimum of services."  I told her I wasn't signing it, to get the District head on the phone, and to get ready to litigate if need be.  I left them by telling them that if they were a barrier to Safi getting what she needs, what they ALL agree she needs, there would be hell to pay.

Now I'm tired, and that's all for today.  We have a meeting scheduled for March 6th and battle, which is so insanely pointless, will continue.  So very disappointing.  Such a cheap, cowardly school district Tulare City School District is.  This is their job....this is MY kid's future.  Shameful.

Sarah

Its been a couple of weeks, with the Davis Trip and then a trip for me to Palm Springs, its been all about recuperating, refocusing, and regrouping.

Let's get right down to it.  The girls were not without their up's and down's on the Davis trip.  Three nights away from home at three different locations.  But all things considered, they did wonderfully.  Towards the end of the trip Safi was really starting to struggle.....turned out she was coming down with a stomach bug that had her throwing up when we got back home.  But they enjoyed meeting new people, staying in new places, and playing at new parks.  The actual appointment went very well.  Nixi briefly spoke to Dr. Soulier as she had promised she would, doing her coy half curtsey at one point.  He said that we can keep her on the Risperdal as long as we're seeing good things from it, all the way up to 6mg though if we stop seeing benefit from it at 3mg-4mg we should consider a change.  He listened to my concerns about her constant lip licking and increased the Cogentin to try to combat what could be extrapyramidl side effects (EPS).  If it continues or worsens we can try switching to Seroquel which is chemically similar to Risperdal but with a lover side effect profile.  At the end of the day he said again that Clozaril is what's waiting for us at the end of our tunnel.  This is true, but my goal is to try to get her to at least age 10 before we go that route.  He suggested I apply for SSI for her and said that he would provide any documentation necessary to try to get her approved.  He then said that he felt some kind of augmentive therapy would be good and that she would benefit from a school environment that is small and supportive so that she can reach her full potential.  He agreed that special day classes in mainstream school would likely just be a form of babysitting and he said that we need to go to an area that has services for her...and we need to do it now, before she hit kindergarten next year.  Essentially, he said everything I've been tossing around for awhile now.  Confirmation that some big changes need to happen very soon.  Her Risperdal was increased another .25mg for a total of 2.25mg to try to affect the morbid quality of her voices in an effort to give her some relief from the guilt that she feels about what her brain says about all of us.  She's doing ok and she's "stable enough" and I'll take that.

Safi continues to struggle in school.  The Friday before we left for Davis she had an incident on the playground where we she became verbally unresponsive to her peers and threatening, putting her arms at her sides, rigid, hands balled into fists, and baring her teeth.  This is a behavior reserved for me when she is absolutely at her wits end, very rarely for sister, never for peers.  Things are escalating.  And, of course, the other students assured the teacher that they were doing everything possible to include her in their game, and teacher said she thought that was true.  Teacher also was shocked when I told her that the kids actively ignore her in the mornings before she gets there and everyone puts on their "smile and play nice for the teacher" face.  Nonetheless, I've been noticing her more and more defensive and on edge with Logan when I pick them up from school.  She takes everything he says as a criticism, though sometimes it is as big brothers and little sister can be, but its just not like her and their relationship.  So, I asked her if she's being teased at school.  "Yes, Mario says my hair is ugly.  Addison says she's smarter than me.", and it goes on and on.  Then, Wednesday, the dagger to the heart.  She said the kids are all staring at her.  I asked her what was going on when they stare, "I'm talking".  So, two things at play here.  One, she is extremely defensive because kids are truly being unkind and nasty to her. Second, she has autism and eye contact can be extremely uncomfortable for those on the spectrum.  For Safi, she's always said it "hurts."  So, understand that when she says this she means that it physically hurts her.  Now, when she was very little speech therapists wanted to teach her to look at a different part of a person's face when talking by placing a sticker on, say, their chin or nose or forehead.  I was opposed to it because she was so social and I didn't want her being stereotyped, as not ALL people on the spectrum struggle with this to the degree that they are incapable of overcoming it.  I wanted Safi to overcome this discomfort because I thought she would when the desire for social interaction outweighed the discomfort.  EPIC FAIL on my part and I feel like a complete asshole.  That was MY issue, my difficulty accepting my child for who she is and what she is and isn't ok with and now, 3+ yrs later she is telling me its simply not ok.  Man, total miss on my part.  Beating myself up aside, more reason why she needs to be in a school for kids like her where she can be taught these tricks so that she CAN socialize comfortably and "pass" out in the world.

So, game plan is to search out schools. get the girls' IEP's to reflect their need for a smaller, more therapeutic school environment, and then to move.  I wont be able to sell my house so I'll need to get it ready to rent.  Just a whole lot of shit to do in a seriously short span of time.  Safi's IEP is this Tuesday, Nixi's at the end of February.  Its time to get crackin and kick some major ass, and I'm feeling up to the task.  Game. On.

Sarah

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:

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