Happy Autism Awareness Month!  Skipped last week and will be on hiatus until after Easter because I'm heading to Spain for a little over a week.

Nixi's IEP was lousy.  Frankly, I don't even feel like talking about it.  Childhood Onset Schizophrenia is such an unknown and so uncommon that I couldn't and didn't expect a lot from her IEP team.  Was disappointed to see a lot of gaps in reporting of symptoms, though, other than blatant ones Nixi doesn't share her symptoms with school staff.  That's a HUGE problem and should be one of her IEP goals.  I was so kind of out of it and on auto pilot that I dropped the ball in a lot of ways during the meeting so will need to add some addendums.

Safi's birthday party went really well.  She had a blast and was an absolute princess.  It was a killer end to a great week that started off with World Autism Awareness day.  We dressed in blue, as did our amazing friends and Safi was so excited she ran into school without her bookbag and lunch sack.  I love that that day is so special to her, literally on par with her birthday.  She felt so special and so proud to be a person living with Autism.  That's when it hit me.  She's gotta feel that way every day, not just one day a year and I have to find a way to make that happen.  Clearly, its do-able....I just gotta do it.

We hit the mountains Sunday with Emily and crew to take another stab at going to the snow.  WE MADE IT!  That's about the extent of the success.  Literally within two minutes Nixi flipped out because her feet were sinking into the inches of fluffy, untouched snow..panicking and screaming there on out every time her foot sunk in snow...so, when she walked.  Follow that with Safi thinking that sledding should be just like TV, you sit on a sled and it moves, and it was a gnarly hour.  Why an hour?  Because Safi literally screamed at the top of her lungs in anger, frustration, and general angst for at least 50 min of that hour.  Then, I had to physically place her in the car where she proceeded to threaten to punch me in the face and go live somewhere else.  The moment we pulled away, meltdown stopped.  It was exactly as it was when Safi was a toddler and would get overstimulated at her various therapies or on outings....she'd fight me into the car then the minute the engine started she'd calm and almost instantly regulate.  Now, I knew keeping it mellow the day after the party was a good idea.  It was a spur of the moment plan to go to the snow and it seemed somewhat mellow because we were going somewhere private and it would just be us and Em's crew.  In retrospect...bad idea.  But I think I want to keep trying because one of these days it may just not be a bad idea and I'll never know if I don't push things here and there.  Nonetheless, a miserable but simultaneously triumphant day...we made it all the way to real snow with no vomit, Safi slid on a sled and felt pride for about 30 seconds, and Nixi made a "tiny snowball."  Exhausted.

I will write my love letters to Safi and to Autism at the end of the month....I'm gonna put my kids to bed and take a bath tonight!

Sarah

Look what we got!!!!


So, as you can tell, St. Patrick's Day was absolutely magical!  The leprechaun left the girls jump ropes, facial hair, and necklaces.  They were delighted.

The rest of the week was an interesting one.  Safi had some rough patches as school.  Frustratingly, I had to find out about them from her after her teacher said she had a great day, no less.  I had to text her teacher and remind her that the deal made in the IEP was for unbiased data collection that every incident, success or upset, must be equally documented.  She agreed and then told me that Safi had actually cried twice that day, not just the one time that Safi shared with me!  I was stunned.  I mean, I had talked to the teacher in face to face and she had told me what a great day Safi had had.  So strange.  There were other days in the week where she had told me Safi struggled, but this particular day she said it was great.  Terrifies me to think that my child crying has become so commonplace that it doesn't constitute a rough day.  Nonetheless, she's enjoying her super cool jump rope and is practicing non stop...with all the bruises to show it, as this is no simple task for a kid who's motor dyspraxic.  But she's determined and she'll do it...because SHE knows she will.  Total rock star.

Nixi.  Rough week culminating in a massive meltdown Wednesday afternoon before school requiring me to put her in her bedroom for a half and hour purely for safety reasons.  She was absolutely out of control.  She got it together, we moved on and forward and she had a great day at school.  There was a substitute teacher, which always throws things off a bit.  Later, at dance class, she had a command hallucination and she kicked a boy in class.  Immediately after the act she ran to a corner of the dance room, faced a wall, and cried hysterically.  They had to bring me into the room to gather her.  On the ride home she lost it again, crying "Mama, I'm SO SORRY!!!".  The "people said he had to go."  Horribly sad and scary.  She has command hallucinations from what I can figure daily and very rarely acts out on them and never before with a peer.  That night I increased her Risperdal by .25mg for a total of 2.50mg.  The following day after bath she said "I will never drink Peanut".  Peanut is the new dog their dad got a week ago.  I said, "How would you drink Peanut?"....she dropped into a weeping ball on the floor, naked, "I WON'T!".  Friday she told she she'll never cook me.  Imagine what its like to be nearly 5 yrs old and having voices in your head talk to you about cooking people.  I still cannot imagine the horrors of what she was told in relation to drinking a dog.  I'm often asked by people if we watch scary movies or TV shows, etc.  How else on earth could a child of her age come up with things like cooking people, cutting me into little pieces, setting me on fire, etc.  While I have no proof that this is the case, I believe that these ideas are generated by what in any other circumstance would be normal, everyday parenting of a small child.  When children are little we focus on praise and safety.  "Don't touch the stove because its hot and it will burn you and hurt you very badly"..."We don't touch knives or scissors because they can cut you and you will bleed and it will hurt", etc.  When Nixi is angry and floridly psychotic and threatening me, she uses those phrases almost verbatim, "I'm going to fire you and its going to hurt you do bad....I'm going to cut you into little pieces and you're going to bleed", etc.  These practical warnings, and to an extent fears, that we present our children with in a very reasonable manner to keep them safe, in the mind of a mentally ill child can become interwoven into their illness.  This has to be it.  We don't watch scary movies or TV, we don't talk about macabre things.  But I have watched thousands of day to day things from our "real world" get weaved into the tapestry of her illness.  This makes sense to me in a situation that is absolutely devoid of sense and pure madness.  Its horribly sad.  She's a kid.  This has been her life since birth, as she says the "people" have always been there.  I had documented her responding to visual hallucinations as far back as 2012, though I didn't attribute it to mental illness.  And if we think back on it, this is clearly why one case worker who had run a baby development center had described as "the most terrified baby I've ever seen", way back when she was under a year old.  Nixi was born with some of the switches tripped already.  The wheels to her illness already there, our home and lifestyle, the stress from Safi's struggles at that time, genetic predisposition...a slight incline, with the wheels ever so slightly inching forward.  September 5th, 2013 was the day the the incline became a steep ravine and the wheels picked up speed.  Now she lives on the tracks of  a roller coaster full of dips, turns, and lots of peaks with chill inducing valleys...the wheels never stop rolling, they just slow at a peak then pick up speed again.  That's the best we can do for now, the best meds can do...the best I can do.

The girls had a tremendous weekend with dad.  I bought the three of them tickets to a Little Mermaid "Under the Sea" party at the local theater and boy did they ever have a great time.  They got fish toys signed by the main characters, learned how to dance with the characters and got their faces painted.  Get this, Safi was the only child who got her whole faces painted to look like Ursula, the octopus villain.  The woman explained to her that it was going to take a very long time and Safi sat through it like a champ.  Afterwards the woman was telling Mike how amazing it was that she was able to sit for the whole thing and then Mike told her that she had Autism...the woman gave him a huge high five.  Best. Day. EVER.

Sarah  

Its weird.  Life sometimes hits you like a tornado, tossing you about here and there, disorienting you, tearing you apart.  Then, like that, everything is eerily calm and your left wondering what the hell just happened.  That was this week.  A bit of a blur post IEP madness...going through the motions on auto pilot, literally trying to recover from trauma.

I totally get how dramatic that sounds but its candid and its honest.  It's like the first time you take your kid to Regional Center when they're little for "Baby Clinic."  A room full of people stare at your kid and ask you a million questions.  You're already terrified...you have to be...you're there.  You wouldn't be there if everything was "Jake" and moving along swimmingly.  You are at your absolute most vulnerable moment.  You're afraid for your kid, you're being grilled, and you're simultaneously instinctively "protecting" your kid.  I'm what clinicians call "an under reporter."  I tend to be biased in my answers about the girls because if I can find some hair of logic in what they are, or aren't, doing...I don't consider it pathological.  I don't feel like it should count against them on that checklists of developmental, social, or psychological deficits.  Hell, I'm often explaining why it makes them significantly brighter and more efficient than a neurotypical person.  Now, I totally get that these checklists aren't out to get anyone.  They are there to identify areas of need so that help and support can be rendered.  I'm a psychologist, for fuck's sake.  But I have to tell you, when its my own kids it sure doesn't feel helpful...especially when those holding the key to the help are indifferent, judgmental, or just clueless.  Fast forward past those early days to school days and the IEP.  Now you're in a situation where you are often forced to point out and drive home your kid's weaknesses and deficits just to get services.  That's horrible for any parent, torture for "an under reporter."  I want to tell you how great my kids are, I don't want to point out every heartbreaking difference or deficit...yet that's what they make you do.  They point out all of the minuscule areas in which your kid has made progress.  I say minuscule because they make the goals as such so that they can be measurable and attainable so it can look like they're doing something for your kid.  Sure they're progressing, they should be...just because they have a disability does not mean that they cease to grow up and mature.  And, yes, they progress slightly more than they may have otherwise in the areas where they are getting the support...but the progress is only as vast as the level of supports given.  But I digress, so they point out all of these wonderful things about your kids...then its your turn to point out everything that's "wrong" with your kids and to even argue with them about how "bad" your kids are doing...and they look at you like you're a huge asshole who doesn't love or appreciate your own children.  And that, my friends, is where the trauma comes in.  You end up in tears, begging for services for your jacked up kid and they look at you like you're the shittiest, most ill informed, ignorant parent on the face of the earth.  Ugly, very ugly.

So, this week has been one for regrouping and processing.

Tonight we set a leprachaun trap.  Last year we almost caught him.  He/she escaped, but not without losing a shoe.  We are very hopeful that it will return and we will bait the trap with the shoe.  This year we looked at the shoe to makes guesses about the size of this leprachaun based on its shoe size and we are confident that we have a better trap.  Nixi has offered up her Easter basket from last year and we're terribly excited to see what's in there come morning.  Happy St. Pat's day!

Sarah

IEP, take two, absolute horror.  District head was there, principle was there for no reason other than a show of force as he has no relevant contact with Safi, and the tone was ominous from the moment we all sat down.  There were raised voices, accusations flying, an abundance of snarky and quippy responses, and nothing changed...other that the bridge between us and the Tulare City School District has officially gone down in flames.  It was a significantly more intense and hostile battleground than I was prepared for.  I know it shocked the hell out of all of them and certainly shocked the hell out of me.  But you know what, that's okay.  It was an eye opener, liberating really.  From this point forth Safi and most likely Nixi's social, emotional, and scholastic educations and development are squarely in my hands and that's a safe, strong, warm place for them to be.  Works for me!

I signed the IEP, stating that "I agree with the IEP, with the exception of offer of placement and level of services and support."  While refusing to change the offer of placement to "More Restrictive", they have admitted that Safi needs more supports than she is currently getting and have proposed interventions such as training the recess aides in "collecting data" on the goings-on on the playground as well as how to intervene when Safi is struggling.  Her teacher has said that there are some things she wants to try in the classroom but was not specific and I requested that she type those up and they be added as addendum to the IEP.
Oh, and they mocked a note from her psychiatrist stating that Safi suffers from depression and anxiety and would benefit from a more restrictive environment for support....The District head, Joyce Nunez, saying "Well, that's not very specific.  I have no idea what that means."  I told her to contact him.  It was just a total breakdown of communication and the egos in the room made it difficult to not explode...completely.  As I wont sit here and type that I was calm, cool, and collected.  When the meeting started and it was even MORE rainbows and lollipops than the first, with each member essentially ignoring the social issues that they had willingly discussed in the first meeting I couldn't believe my ears.  The teacher saying that Safi has enhanced her student's growth, blah blah blah...no more 5-15 disruptions daily in class disrupting the educational flow.  My god, I thought I was going to burst into flames right there in front of them all.  Mike was over it within the first few minutes....yet this thing dragged on for nearly two hours.  It was miserable and felt every bit as degrading and dehumanizing as it always has.  The only good thing is that Safi didn't have to be a party to the chaos and madness.

I called the school in Los Angles and told them about the IEP and they said it was no problem that they wouldn't put more restrictive environment, that they would still consider her based on her speech levels alone (receptive speech, or understanding what others say: 5yr 2mos, expressive speech, expressing herself: 3 yr 2 mos.) as she will be 7 yrs old next month and that clearly indicates a serious need in her social and pragmatic speech, and they apologized for how poorly the meeting went.  Thank you Village Glen school, for apologizing for my kid not getting the quality and level of supports and services that she needs in her current district.  You've already won me over.

Nixi remains concerned with going into the hallway because she hears stomping noises, apparently one of the more common auditory hallucinations in kids like her (along with crashing noises, scraping, "bam", etc.), but on a whole she is "stable enough" and doing okay.  Her IEP is the end of this month.  Joy.

Girls were with Mike all weekend and attended the zoo dressed like princesses for a fabulous Saturday morning outing.  I mowed the lawn because we finally got rain and the damn grass grew!  All in all, it was a kind of gnarly and surreal week.  What more can you say.

Sarah

Pretty good week as things go.  Preparing myself for the frustration of the second IEP meeting on the 6th and keeping busy looking at all of our options for the 20142015 school year, move, etc.

Safi had some good days and some rough days.  Seems that's just the way she goes for now.  Really looking forward to getting her back to the place she was before this school year, before summer even.  I know we can get there, its just going to be a process of repairing damaged trust and increasing her self esteem.  Essentially, the same stuff we had to do when she was 3 yrs old and finally pulled her out of the intensive ABA (applied behavioral analysis) program that literally nearly destroyed her.  Its going to be a lot of work but its totally do-able and I can't wait to get my kid back, I really miss her.  But her and her friend Sophia dressed up as twins for twin day at school and that ended the school week on a fun and special note.

Nix.  Oh, sweet little ever psychotic Pixie Nixi.  Nixi has a baseline level of psychosis, her "stable enough" state that includes hearing voices and having strange thoughts, etc. but its manageable.  For some reason this week started with her above baseline.  She was afraid to go into rooms in the house by herself (usually an indication that she's having visual hallucinations), then while taking sister to school she told me she saw  sheep at the park.  She was absolutely amazed, as that would be stunning.  It was the large white boulders that line the pond at the park, but they were "moving"(not in our reality) and she was never truly convinced that they weren't sheep. Command hallucinations telling her to "E-e-eat your doggies", brain telling her that they are going to take me to be their queen....and the worst, the dreaded paranoia.  She thought her school aid was mocking her, that her teachers "love" the other girl student but not her (despite the fact that the aid bring her daughter's hair clips and does Nixi's hair "fancy" nearly every day), at dance class lots of head down, crying, misinterpreting other's intentions as nefarious.  I had to drive back from dance class with one hand on the wheel and the other wrenched behind my seat to hold her hand because she completely fell apart, sobbing the whole way.  Considered increasing her meds again but after giving it a few days, bam, back to baseline.  That's wonderful, my only concern is that I was never able to identify an antecedent.  Perhaps there was none, and this is the natural waxing and waning of the illness.  That sucks.  Its another reminder that none of us has any control over this at all and that just sucks.  But she came back this time, so that's a great thing.  Trying not to focus on anything but that....which those of you who know me know that's a huge amount of smoke blowing out of my ass.  I spent a good part of the week researching treatment options, theories, all of the bullshit that I've already read and re-read dozens of times in absolute panic that this would be the new norm and she wouldn't come back...because that has happened in the past.  BUT, it didn't happen this time and I'm working on staying in the present and being thankful for today.

We had a great weekend celebrating Logan's 8th birthday with a camping themed party.  The moment the girls got home Safi went around the house like an interior designer explaining to me how we would transform the house into a princess castle for her birthday party.  I put Emily on it immediately as I blame her fully for creating these amazing Pinterest filled parties for her kids.  It was fun.

Early release all week, parent/teacher conference, and the IEP "Summit"....damn, being a grown up blows.  Shall be an interesting week.

Sarah

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