Tired.Mike and I are both really tired.He, with his new job and then coming home to the chaos as of late.Me, with the decompensation of Nixi and the slight regressions of Safi.



Trying to keep things afloat can be absolutely draining.This week in the online support group there was a flurry of medication posts.....and they WERE NOT about our children.They were posts from all of the parents about the medications they are on for anxiety, depression, insomnia, etc.There was talk of "if I had someone to watch my kids I would check myself into the psych unit", "teetering on suicide", "holding on by a thread".This is the weight of living this life.And, while some of those statements may seem disturbing toyou, I am always struck by the devotion of these parents.


Even when in the absolute pit of despair, they stay put and muscle on because there's no one to watch their kids.Wrap you brain around that one for a minute.Sure, there's those passing moments of resentment we all have...because if our kids were doing well we wouldn't be in any emotional, spiritual, and sometimes financial pit.They say a parent is only as happy as they're least happy child....while cliche's annoy me, and they do...this one could not be more spot on.

With Nixi slipping away and Safi struggling here and there its been a draining past two weeks.This is the absolute worst time for this because its almost time for back to school.Back to school for most families means buying clothes, backpacks, and school supplies.For us it means setting up parent/teacher meetings prior to the first day, writing "cliff notes" on each girl to give to their teachers, taking pictures of everything from the route to school to the classroom door, classroom, bathroom, recess area, etc for a slide show to get them ready.It means a lot of work and being tired just isn't an option.

Yet, I can't shake this.I want to.I try to.But I'm struggling to.Tomorrow I take Safi to the psychiatrist that I am seeing for the first time to talk about getting her on a low dose antidepressant to help with overall anxiety so common with Autism.Our appointment is at 8am.Nixi has to go with us.Her current prominent, though not new, delusional system is that everyone dislikes her, is uninterested in her, thinks she's not special, etc.So, if someone compliments someone else, talks to someone else, etc. that means that they hate her, want to harm her, or something exceptionally negative.An example from summer school.Our little friend Zoey saw a girl she knew from somewhere else and said, "I know her."Nixi began crying hysterically, loudly, saying "She doesn't know me, she said I'm not her friend."Of course this never happened, but for Nixi it is her reality.Anytime I say anything off the cuff like "Was that [food] good?" to Safi, regardless of the good mood everyone is in Nixi will scream and cry hysterically, "You don't like my food.You don't like me."This is a morph of her earlier delusions that people were angry with her all the time.Nonetheless, it will be difficult to have her at the appointment tomorrow because the appointment will be about Safi.When she is reminded of this she will scream and become hysterical that the doctor doesn't like her, etc.I can already hear it now.But there is no choice.She must go with us.Just hoping we can get through it and get Safi squared away.

We went to Boingo's, and indoor bounce house place mid week.We lasted 30 minutes.Safi had a blast, within 5 minutes Nixi was in my lap in a fetal position bouncing between crying, rocking back and forth, and screaming that kids were being mean to her, didn't like her, sister woldn't play with her, etc.It was really sad but lately, its just the way life is for her.

Nixi is excited to see Dr. Soulier, her psychiatrist.She told her friend Logan today that he makes tries to make the monsters go away.Tries.But they never do.Tonight her and I were alone in the car and she told me that they were arguing today and she yelled at them to stop...they didn't.They never do.She also confessed this week that there are "monsters" and "normal" voices doing a running commentary about her life.

Mike was doing ICC's at work, a process by which inmates are classified/housing assigned/penalties imposed, etc.One of the inmates was schizophrenic, trying to do the right thing and take his meds, but schizophrenic to the core.It hit Mike really hard.I know I could never work in forensics again...EVER.Do a lot of inmates malinger, or fake it, yes...but you have no idea the numbers of truly mentally ill housed in our correctional institutions.NO IDEA.and no idea how hard it is for them to get their basic mental health care needs met...and I'm speaking as someone who tried and admit to failing miserably.Hat's off to Mike.I can't imagine what that ICC must have felt like in soul.

Thursdayand Friday are the last days of our grass roots summer school.Mike will be there for the graduation on Friday and I'm hoping that enhances the fun, as the change of him being there could just as easily throw off the delicate balance needed these days.Sunday we head up to Davis.We'll stop at a little zoo in Lodi on the way. Trying to tire the girls out so when we arrive at Davis and the hotel Safi actually sleeps. This will be her first night in a hotel and while she is super excited, she's super anxious about it, too.

On a more positive note.Nixi has been diaper free and using the bathroom for nearly a month now, something Mike and I doubted would ever happen.I've also moved her back into the room with Safi and I as the mornings with Mike getting up early for work was too disruptive for us all.So far its gone extremely well.That's huge.Safi also told me that she wants to wear her weighted vest to school on the first day.That's amazing and awesome that she knows she'll need it and requested it.Even more awesome, her one from last year still fits so we don't have to shell out another $75 for a new one just yet!And we went to a movie, Turbo, today with Emily and her crew...a bonafide, unaltered, regular movie!Neither girls needed headphones and they had a blast, of course Nixi went south mid way and thereafter.But in the first twenty minutes she looked at me and said "This is my best time EVER", grinning ear to ear.And Safi could be glimpsed getting funky in her seat during some of the music scenes.Three adults and 6 kids from 5 months to 7 years....some popcorn spills, flip flop lost and found, and a a giant bucket of popcorn refilled twice!A year ago I would have told you it would never happen....today it happened and it was rad.

Always some good with the tough, even if sometimes we're too damn tired to see it or remember it when it comes time to write the blog.

That's all I got in me tonight.Make sure to check back next week to see how everyone's psychiatry appointments went, our first hotel trip as a family, and the end of another summer school.

SarahP.S.Just wanted to get this out there.After I write these blogs I do not proofread them.I hit publish and don't generally read them for a few days...if not weeks.I spell check, but that's it.So, sorry for any confusing parts...if you get the gist, I'm good with that.

Kind of an old school video but really relevant as this woman seems to describe experiencing some of what Nixi does when she was a child.Also, slightly comforting for her to hear her say that she thinks maybe having schizophrenia since childhood was better than developing it later in life like most.

A little old, but good...this is a psychosis simulation produced by Janssen Pharmaceutical.Inicidentally, the maker of Nixi's Risperidal.I like that it covers the gamut of psychotic experiences...
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