Nixi's 4th birthday............

Thanks Aunt Becky for the cool hats!

Lowe's....

Here we are, the last days of April.  This is the last post I'll do related specifically to Autism but I have decided to continue writing the blog for the month of May, as it will be Mental Health Awareness Month.

So, first an update on Nixi.  Called the psychiatrist on Monday and if we were not able to make it up to see him by the following Monday he wanted us to consider taking her to the hospital for inpatient psychiatric care.  Nix and I hoofed it up there on Thursday for a Friday appointment.  By the time we left she was completely gone.  Totally euphoric, bizarre, delusional, and hallucinating.  Once we got to Sacramento and checked into our hotel she continued to get more and more bizarre and delusional.  It became apparent that she was hallucinating, likely a running commentary on what she was doing with the addition of negative feedback leading to her being concerned that Dr. Soulier (the psychiatrist) would be mad at her for putting things in the fridge, brushing her teeth, etc.  She was up until 4am, waking on Friday morning on 4 hours of sleep and major psychosis.  I found a local park for us to visit.  By the time we got there she was becoming more and more irritable, wanting to go home, etc.  At the park she was just bizarre, doing this very loud baby gibberish and running from thing to thing frantically, all the while laughing wildly.  She went under the play structure where another little boy was only to come out a moment later crying, upset, and paranoid that he was doing something to her but I was able to distract her fairly quickly.  As I stood back, taking in the whole scene and context of the day I was startled at just how bizarre and different she looked.  Mike and I don't always notice it because we live in a house of "non typical", and I rarely take moments to step outside of the situation to look at things through other's eyes.  Friday it was impossible not to do so.  Nixi was at a place in her illness that I had never been with her and on some level she was a stranger to me.  It was scary.  She has also begun obsessively scratching herself when she's nervous and Friday it peaked.  She scratched her knees raw, dug her fingers into her palms, and left welts all over her wrists and shoulders.  She was unable to nap due to motor agitation, constantly moving and doing this strange breathing pattern.

By the time we got to the doctor's office and we went back and I tried to show him the damage she had done with the scratching she went, for lack of a better descriptor, feral.  She completely lost it then crawled into my lap and  twiddled my hair until the end of the appointment when she found interest in an infant toy he had on the floor. We conference called Mike and collaboratively decided to skip the mood stabilizer and go straight to an anti psychotic.  Dr. Soulier explained that if her psychosis were a byproduct of her moods and the mood component was her primary issue he'd be in favor of trying a stabilizer.  However, he didn't see that as her primary issue and wanted to give her something that would target the real problem.  We agreed.  We told him that we were afraid that we would "lose" her because we've never really known another Nixi.  With that in mind we all decided that our goal would be to take the edge off of her symptoms and get them into the background but not to make them go away completely.  To do that she would need to be on high doses of medication and it is likely that her symptoms would still not completely disappear.  If that were our goal, we could be endlessly adjusting and adding more and more meds.  This is not what any of us want.  So he put her on the smallest dose of Risperidone possible to see therapeutic benefit (.25mg) and we will call him in two weeks to reassess.  In a month she'll have a blood draw to check blood sugar levels, liver functioning, etc.  We are at comfortable with our decision.  Nixi had her first dose Saturday night and we saw notable improvement...she was less scattered and disorganized, less irritable and moody.  Enough of a change to say we are optimistic.  This evening at 6pm we saw the gains fall away over a span of 15 minutes so we gave her the second dose an hour earlier than we had last night.  We'll see tomorrow if that hold her over for the duration of tomorrow.  The psychiatrist suggested adding a second dose of .25mg after the two week mark to the morning but saw my hesitation so just said we'd talk about it then.  We may have to do that to keep her from teetering in the edge and I'm ok with that.  It is a tremendous relief that she is responding to the medication and seeing the benefits slip away at 6PM just served as confirmation that it IS working.  A wonderful thing.  I had the fear that she wouldn't respond to the first anti psychotic tried.  When this occurs, prognosis is even worse.  Bittersweet as all things in our life seem to be, it is also a confirmation of the diagnosis we left with on Friday.  Nixi is no longer diagnosed with Psychotic Disorder, NOS.  She has been formally diagnosed with Childhood Onset Schizophrenia.  Dr. Soulier, again, encouraged us to get her into the National Institute of Health Early Onset Schizophrenia studies.  She is not eligible until 5 or 6 years of age and it is an inpatient experience lasting up to 9 weeks.  As he said, it is the gold standard of care for a population that has no gold standard due to its rarity.  We have 2 years to decide, and he was good with that.

Poor Safi woke up Saturday morning with a temp of 102, peaking today at 103.7.  She literally fought me today when I needed to give her some Ibuprofen, it was horrible.  All you want to do is make her feel better but due to the taste of the medicine she would rather be ill than take it.  She went to bed peacefully tonight and I'll keep her home from school tomorrow.  Her field trip to Lowe's was awesome!  She had a blast with her friends and kept hugging me and saying "mommy".  We got to build a Kung Fu Panda toy together and it was absolutely sublime.

Today was a good day, relatively peaceful (except for the Ibuprofen incident)...more so than its been in a long while.  I'm trying not to get too excited but its hard not to.  Just think of the possibilities if we can keep Nixi stable....for her AND for Safi.  Yes, things will change and Nixi will need adjustments here and there.  She'll do great until she doesn't and we'll have to take that as it comes.  But tonight I am just really optimistic.  I haven't been able to say that in a long time.  So, I'm going to live in that moment and relish the win.  I'll do my love letters to my daughters and their diagnoses in May....though I don't know that Schizophrenia is going to get much fluff.  Tonight I'm going to enjoy the small things.  I'll save the deep soul searching for another night.

Sarah

Trip to Davis....new hope and new beginnings.

Mustache Monday went swimmingly!

Jr. Firefighter Nixi!

Safi's school Open House...

The fun before the Storm at the Farm Equipment Show....

Zoey

Logan

Josh

Wow.  A week full of up's and the proverbial down's.

 Nixi took her dad on her firehouse field trip and they had a great time.  This was a great source of anxiety for Mike and I because she has been steadily spiraling further and further out of control.  Massive meltdown's after school, struggling to get through the days, hallucinating, crying, angry, confused, and scared.  After the park one day she looked troubled.  As I buckled her into her car seat she asked me, "Are we in a storybook?  Is this land real?  Are we real?"  Broke my heart, total reality disconnect and she was fully aware of it and scared.  Mike and I talked it over and it has become clear that we, alone, cannot keep her at a constant baseline.  I will call the psychiatrist up in Davis on Monday, we are going to start her on medication.  In hopes of delaying the toxic anti psychotics, we are going to request that Nixi be put on a neuroleptic (Lamictal) which is used "off label" as a mood stabilizer.  The side effect profile is livable, no weekly blood draws, and it is FDA approved for children as young as 4.  Perhaps if we can get her mood in check taht will buy us some time before inevitably having to add an anti psychotic.

Safi, poor Safi.  We talk about this all the time in this blog....autism and the need for routine, predictability, and consistency.  I can provide that, Mike can provide that, Nixi is a lose cannon.  Lately it seems like every time Safi is in a great mood and in a great state of mind, Nixi bulldozes over her with her unpredictable, inconsistent mood swings.  By the time Safi is totally upset, dysregulated, and all around jacked up Nixi comes back around and has absolutely no idea why everyone is upset.  It breaks my heart.  Her little sister, her best bud, is also a weight around her ankle pulling her down and drowning her.  I'm pretty sure I used this analogy in reference to the two last April.  Ok, I just ready through the final blog entry from April 2012 and yes, I did.  I also railed on Autism for taking my youngest child away.........perhaps this year I owe Autism an apology because this year I know that its not Autism stealing my child and warping her brain.  That beast's name is chronic mental illness and it makes Autism look like a furry little kitten.  I know, the April posts are supposed to be about Mike and my experience as parents of a child with autism. I can't help it folks, for once in our lives as these girls' parents, Autism just isn't the priority.  Supporting our daughter with Autism as she struggles to find her legs in a turbulent sea of her sister's mental illness?  YES!

Overall, Safi handles this in such stride and much better than the rest of us.  She imposes her own structure when our structure is disrupted.  She even lets some of her routine go when we need the flexibility.  She recovers exceptionally quickly from upsets and is even quicker to tell you she's ok and crack a joke to make you smile.  She is able to sort of melt  into the waves of Nixi's illness and ride them with her until they crash into our world.  She floats so easily in and out of Nixi's world.  With her there are no questions or assumptions, she knows that Nixi isn't with us and she knows how to meet Nixi wherever she is.  Its really beautiful and sad all at the same time.  Where we really see the stress taking its toll is on her attitude.  She is flippant, rude, and oppositional once her reserves are spent and I am the prime target.  In the midst of all of Nxi's chaos it can be hard to remember that Safi has so many other things to deal with besides her crazy family.  She has spelling tests, math time tests, social hurdles, and Autism.  Some days her reserve tank is fuller than others.  She is a really amazing little girl.  She deserves better.

Unfortunately, that's how it goes in a family with multiple special needs kids.  Someone always seems to get short changed and we are left hoping that whoever it is can remember that they, too, were once the"critical kid".  We long for the day when there is no "critical kid" consuming our every waking moment.  I literally cannot imagine what that would be like.

We capped off the week with a fun then absolutely horrific trip to the Antique Farm Equipment Show.  My best friend, Emily's sister was working the kiddie area and got us into the show for free.  Once we hooked up with Emily and the kids it was game on.  They all stormed the bounce house en mass and everyone was having a great time.  Until Nixi was not.  When Nixi started to implode in the bounce house she looked me straight in the eyes and screamed, "I'm doing the best I can...the BEST I CAN!!!"  And she was.  That's what made it so horribly sad, to see her reduced to a shaking, screaming, crying shell of the little girl taht once was.  She KNOWS that she's disappearing right before our eyes.  She KNOWS that she is losing touch...and she is scared.  I'm scared, too...and this she knows as well. And so it is and, for now, so it shall be.

Sarah

We had quite the week.  Amidst all of the prep for the girls' carnival birthday party I had to head to the ER due to kidney stones.  The pain was unbearable and started after Mike had already left for an interview over an hour away....and it was Safi's birthday.  We had prepared these neat little goodie bags for her classmates the night before and she was all jazzed about a "birthday girl" pin we bought for her back pack.  There was no way in hell that she was going to miss this day.

I struggled through our morning routine and told the girls I was sick.  I told Safi that when we got to school she would need to stand with one of her friend's mommies and I told Nixi that she was missing school and needed to go to the hospital with me.  We made it to school but the pain was increasing.  I handed my birthday girl off to another mom, along with the goodie bags, and managed to only look back once to see her standing there alone on my way back to the car.  Ran into her best friend and her mom just as I hit the car and, telling mom Amanda to look out for my girl.  It was awful.  As I started driving to the ER the pain intensified and a wave of nausea and tears took over.  I literally wasn't sure if the nausea was from whatever horror was going on inside my body or if it was from the horror that this blip, this  hiccup in the routine, this goddamn shitty ass body of mine, was going to ruin my daughter's birthday.  This may not seem like a terribly big deal to most.  But for my kid, this is a HUGE deal.  She's been watching other kids celebrate their birthdays in class with these damn cellophane goody bags all year.  She hasn't been invited to a single birthday party attached to these consolation prize bags, but at this point that doesn't seem to matter.  All that matters is that she is like everyone else.  Luckily, she had a great day.

Nixi was amazing.  I had to pull over on the way to the ER to get sick, she was scared but she told me that once we got to the hospital "they'll make you feel better."  She waited in the ER with for 2 hours.  I wasn't allowed to have any pain meds until I called someone who would drive us home.  I had to drag Emily and her baby out to the filthy, painfully slow Tulare District Hospital.  Eventually the girls' autism BIA, Heather, and her partner Sarah arrived and took Nixi home.  I told Emily to get the hell out of there and Sarah took me home.  Safi was obsessed with going to Olive Garden for her birthday dinner.  I was in pain and disturbingly nauseous.  Emily brought me her kids' Zofran and I was able to sit through dinner.  Had I not been able to make it to dinner, John had already told Mike he and his daughter (Safi's best bud) Sophia would go with them.

All in all, Safi had a great birthday.  The next two days were filled with me going to doctors and specialists, a scheduled surgery and then a cancelled surgery because the largest stone finally moved.  Emily, Heather, Sarah, and our friends Amanda and John are the reason we got through the week.  Hell, my friend Katie offered to pick me up that Tuesday and take me to a better ER after dropping her daughter off at school a town away.  Without our friends I have no idea what we would have done.

Nana and Grandpa Dan came up for the weekend to prep for the carnival and attend the party.  The girls had a wonderful time.  Mike and I were grateful for the distraction for the girls because we had a lot of catch up to do for the party.  One of the games just wasn't going to be able to happen, Amanda (Sophia's mom) hit the stores and began texting me alternatives and offering to pick them up for me.  Party went off without a hitch, again, because of our friends.  I had a couple of "helpers" bail and Emily and her husband were there to help pull it all off.  The girls' poor Auntie Shae got lost trying to find the party but pulled through in the end and was my emotional rock, as she's always been.  Amanda and John were there, she lending her "I'm down for anything" vibe and he providing his usual "human Valium" aura.  It was a wonderful party.  Our friend's the Shooks were first to arrive and dove right into the games which took the pressure off instantly.  The Olsens were soon to follow, dad Lex with his witty quips that always lighten the mood and make laugh and Katie and the kids lending a feeling of familiarity and comfort.  The key players in Safi's social world all showed and they had a blast.  Sadly none of Nixi's classmates showed, a fact lost on her despite Safi innocently pointing it out.  We ate pizza, cotton candy, and popcorn...played games, won prizes, collected balloon sculptures made by our makeup-less clown Lolli and her daughter, and the girls got their glittery number birthday candles courtesy of Emily and her sister Julie.  It was a good day.  A damn good day.

As I buckled Safi into the car after all of our friends had cleaned everything up for us and stacked all of our take home items neatly in one place I was struck with an intense moment of both joy and sadness.  I hugged Emily and said, "How can we leave?  How can we ever move?"  See, we need these people.  These are the only people in the world, or at least in our world, that understand how important the "little things" are to our girls.  And these people took the time to learn our girls' intricacies because they love our girls and they love us and know we're never truly happy unless the girls are happy.  They go out of their way to give us "normal" moments so easily taken for granted by most.  We always talk and plan for the day we get the hell out of here and move to a place where the girls can get what they need.  We research schools that literally make us cry because they are exactly where the girls should be to thrive.  We look at land, houses, communities where our daughters can live out the rest of their lives safely and happily long after we're gone.

People often ask us what we do for ourselves.  "How do you take care of you?"  We always laugh and answer that we don't have time to do anything for ourselves.  Are you crazy?!  Some days we don't even have time to shower and most days we don't have the energy to do anything other than raise the girls.  After this week, I finally have a better answer.  How do I take care of myself, what do I do for me?  I see, text, call, play date, commiserate, laugh, cry, and just "be" with my friends every chance I get.  Neither Mike nor I are very big on counting on other people.  We like to handle our business ourselves and that's that.  But the truth of the matter is, we need all of these people.  These people make our life complete and without any one of them our life would just not be the same.  These people are our family.  Ive never understood what the big deal was when someone talks about having to move away from their family.  I mean, you become a grown up and you live your life.  You can always visit and call home.  Its not like you're leaving your family, your just leaving a place.  Ok, I get it now.

When we got home and we were talking about the party Mike said "That'd be the bad part about moving", in reference to leaving our friends.  It hit him just as hard as it hit me buckling the girls into the car.  We certainly can't stay here forever and we can't take them with us...though I'm working on sharing our "vision" with them for a large scale board and care where each and every one of them could work!  Hint, hint, nod, nod, wink, wink.  I just don't know when we'll ever be ready to go out on our own again...Mike and I, that is.  Seriously, being a parent is awful.  For once I want to do something selfish.  I don't want to have to think about how what we do today may affect the girls 20 years from now.  I just want to be in the moment and live day to day.

Obviously that just can't be and that sucks.  It sucks bad.  For tonight I chose to live in the now and revel in the victory of the birthday party.  I chose to think only as far as the next park play date...tomorrow.  I chose to feel the warmth of my friends love and support all around me.  Tonight I will lay my head down and think of nothing....seriously, nothing...and actually go to sleep.  Tomorrow will come soon enough...insurance company to call to get a denial of coverage letter for Autism services, forcing Regional Center to continue to pay...Nixi, just Nixi....Mustache Monday for Safi...............

Goodnight, dear friends, goodnight.  Thank you for making your lives slightly (and sometimes extremely) abnormal so that I and my family can have moments of "normal".  It is divine, as are you.

Sarah

Well, here we are again.  Another April, another chance to raise autism awareness on a grand scale, and another year gone by in the blink of an eye.

I'm sure I've talked about this before but humor me, as it weighs heavy on my mind tonight.  I can't help but say to myself, "Another April...has it been a year...really?!?....What have I missed?"  Living the way Mike, myself, and the girls do...triage, from one fire to another...leaves so little time to sit still and enjoy our lives.  There have been a number of milestones over this past year, and I can rattle them all off to you in a second...Safi mainstreamed into a huge kindergarten class, Nixi is in preschool, we've gotten new pets, has visits from family, made amazing new friends, etc.  But I still feel as though, in some sense, I went through these experiences in zombie mode.  See, I'm never able to really let go an enjoy the moment because I am always worried that something will set off one of the girls and bring things to a screeching halt.  Always waiting for the other shoe to drop.

The best defense is a good offense.  Never let your brain rest, always think three steps ahead.  HAVE TO GIVE THE GIRLS A HAPPY LIFE.  So much pressure.  We're used to living like this, but this year its different.  This year, and for the rest of our lives, we really will be waiting for the other shoe to drop....on Nixi...squashing her like a bug on a windshield that never had a chance.  That poor bug was just flying along, feeling the wind in its wings, the sun on its face...SPLATTTTT!  Some fool will walk by and marvel that, while flatter than a pancake and guts squished out, that bug was really beautiful.  "Look at the wings, the body is iridescent!"

 This is pretty much what Nixi has to look forward to once the windshield catches up with her. "Awe, but she's so cute.  Her voice is so sweet.  She says the darnedest things!"...and then the guts, on display for everyone to see, psychosis.  I know that this is April and we hijack the blog to do autism awareness stuff...but this year we are in a whole other world.  You see, psychosis is progressive.  Here we are, solidly at the 7 month mark (9 if you count the two month paranoia prodromal stage) and Nixi remains psychotic.  We've passed the 6 month mark needed for Schizophrenia and she has psychotic symptoms in the absence of mood symptoms.  While a particular diagnosis doesn't really matter, as all chronic psychotic disorders are progressive and treatment is roughly the same, you can read between the lines.  I don't want a child with schizophrenia.  I don't want a child who has Bipolar I with severe psychotic features.  I want a freaking child with Autism!!!!  I can do that.

This is my daughter prior to September 5th....

This is my daughter in the grips of psychosis.....

Safi is doing really well.  Sure her social skills continue to be one of her greatest deficits, her anxiety level is often through the roof causing her to be a control freak, she only eats a handful of foods, has mega colon, when asked says that she prefers things to people, doesn't understand basic safety concepts, has crying jags several times a week for one reason or another.  But she's doing quite well, and its manageable and somewhat predictable for us at this stage in the game.  She will change, grow up, new challenges will arise...but we have been meticulously building the foundation that will help her with all of these transitions.  And I believe that she will get through them and come out the other end.

With Nixi, we just don't know what the end of her tunnel holds and its terrifying.  Like wake you up out of a dead sleep with heart palpitations kind of terrifying.  When will be the day she leaves us forever, only coming back to us as parts of the little girl we knew and even then only with the assistance of highly toxic medications?  This is not cynicism or unrealistic worry of concerned parents.  This is a 100% fact.  This day will come.  That is the course of psychosis.  Will it be tomorrow or will it be in 20 years.  The suspense is draining.  And she knows it, too.  I believe that with all of my soul.  Each time her stress level increases and her symptoms increase she seems more and more helpless to fight the things inside her head.  Her apathy grows, as if she is resigned to the fact that her worst moments may be her new norm.  When this all started she fought the thoughts, the hallucinations, the fear.  She talked to us about it, she wanted us to tell her that it wasn't real, she clung to us...to me for safety.  Now, she often denies obvious symptoms and get angry when you ask her how she's doing.  She cocoons herself and her thoughts, only exposing her manic and desperate attempts to create so much external stimuli that the internal stimuli lessens.  She becomes a whirling dervish...eyes wild, voice loud and screechy, moving a million miles a minute with this huge Cheshire grin. To most it looks like a kid having the time of her life, to us it is a signal that a part of her is gone.  If you try to slow her down you'll enrage her.  Must keep going, can't stop, can't take a break.  She hurts herself daily because she is going so fast.  She has begun mutilating her thumb...I put a bandage over it...she's moved on to other fingers.  During our visit with Grandpa Seifert and Aunt Becky she sliced her tongue open with a fork.  She listens to me retell an incident with a bully at the park and asks me "Did he kick me in the face like that?" and slaps herself in the face so hard you can hear her nose crunch.  Not a flinch or even a blink.  I've stopped blowing kisses to her because when we do the routine catching of the kiss and putting it on our cheek she slaps herself so hard it leaves a red mark.  While the other shoe has not dropped, the laces have surely untied.

I'm tired.  Mike spent last weekend and this weekend building the girls' birthday Chalet and swing set.  I helped a little but it was entertaining the girls by myself for the past two days straight that has me beat.  The IEP was an IEP.  We got everything we wanted, everything Nixi needs.  I got a better sense of where the teacher's head is at, and she mine.  It was the best IEP I've been to.  I felt like we really worked in this one.  But I have IEP PTSD.  A week of no sleep and stress culminating in a tense two hour meeting is mind numbing and draining.  So I'm off.  Next week I'll get back to the more Autism centered posts, but this is just where we are all at this week.  So, be thinking of Safi on her birthday this Tuesday and make sure to check back next week to see how the girls' carnival birthday party went!

Sarah

The Chalet....