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