When you have two children you always worry about sibling rivalry, equal distribution of time and energy, and meeting both of their needs at the same time.

Tonight, Safi was given a consequence and sent to her room.  When I went in to talk to her about what had happened and suggest we have a "do over", she cried and blurted out "Its just too hard to have her here, I don't want a little sister, its just too hard to have Nixi here!"  My heart literally felt as though it was crawling up through my throat and out of my mouth to encompass her, protect her, hold her.  I said, "Yes, I know, it is hard."  Nixi was blissfully unaware of all of this as she was in the living room on the couch watching a show at top volume.  I then said, "But we are family and family is forever, we love each other when we're mad, sad, glad, mean , sweet, happy, ugly, quiet, or screaming.  We are here for each other on the bad days and the good days and, while we can't choose when and which days we get...we can choose to love each other."  That was it.  That was all I had.  That is all I have.

Just as Safi's Autism took a heavy toll those first three to four years, Nixi's mental illness is currently taking its toll and we're bending under the pressure of it.  I remember feeling such tremendous guilt after Nixi was born for bringing her into a situation that was so scary, so unstable.  Safi was a prolific head banger at the time, so much so that we had to take her to a neurologist to make sure she wouldn't end up "punch drunk."  She was having these full body meltdowns that could last for hours where she needed to be held tightly in order to calm....deep pressure, therapeutic holds...but essentially to the untrained eye, full body restraint.  I remember wearing Nixi in a sling as I did these holds, sometimes nursing her at the same time as her sister wailed and wrenched her body in horrific positions until it felt "just right".  I remember looking at this sweet little baby and thinking, "My god, what have I done."  Outings were a nightmare because something in the environment would set Safi off due to her extreme sensory profile at the time.  I started wearing Nixi in a Chinese Mei Tai because it was easiest to jiggle her onto my back where she wouldn't be at risk of being hit, kicked, or headbutted by an out of control, fear and flight response Safi.  If felt so unfair, to all of us.  But it passed.  Literally as it was passing through the door, Nixi's illness was quietly sneaking in.

Insidious onset, characteristic of Childhood Onset Schizophrenia.  While I always felt something wasn't right with her Autism diagnosis, I certainly didn't see that one coming and most importantly...neither did her sister.  Once Safi began to hit her stride, Nixi's world came crashing down....on all of us...as it would appear in retrospect that she has never known any world that is different.  Now we had to leave outings because Nixi was afraid people were going to steal her shoes or "smash" her.  Now it was Nixi who writhed in mental anguish.  The only difference is that no amount of therapeutic holding, weighted vests, or social stories can make things right for her.  We just have to ride the waves with her as they crash repeatedly on our shore.

Tonight I had to increase her Risperdal by .25mg....we are now up to a total of 2.75mg.  Things have not been improving but instead are slowly getting worse.  The "people" keep telling her she is bad.  This prompts repeated accusations that we don't love her, like her, etc...we only like Safi, the dogs, the cats...as she is doing this both at my house and dad's.  Anytime Safi does anything she doesn't like, at all, even looking at her...."Safi's being mean to me!"  Its relentless and its not fair.  Its not fair to any of us.  Something new has started, her screaming she needs me even when I am sitting right next to her or in her line of vision.  Then when I tell her I'm right there she just continues to say that she needs me or that she misses me.  I have no idea what that is about.   I am no closer to the RV idea than I was last week so I am begging our families to please consider reaching out and talking with either Mike or I about this idea.  I am doing my very best to try to get the old RV on the side of the house up and running so that I can sell it but I'm not sure when I can make that happen and school for the girls ends this week for Nix, and next week for Safi.  When I am able to sell it I will be able to pay back any money lent.  I absolutely know the change of scenery helps buy us some time with Nixi and it also allows Safi the luxury of meeting new kids, practicing social skills, and it benefits her the most to have a tired and somewhat stable sister.

With that, I say goodnight.  For my birthday I was given the gift of the world....it was and is the best gift ever....and its the same gift I want to give to the girls.

Sarah

May 20th...scary, as I've not seen her facing a wall muttering to herself since mid 2012.  She had been jumping on the trampoline inside and we were talking about lunch, I opened the sliding glass door to let the dogs out and seconds later came back into the house to this.....


After school that same day. I tell her not to come at me because by the time I videoed this she had already come at me in frustration/agressively several times.

Took Mother's Day weekend off from the blog because we were busy having way too much fun in Santa Cruz and Scotts Valley!  It was a blast...and due to dad's diligent support and encouragement in his complex's pool, Safi "swam"(damn good dog paddle with floatie wings) as much as possible and cried when we had to leave.  Nix enjoyed warning people that they may sink and drown, blowing bubbles, and bravely venturing off of the pool steps and screaming, "Look!!!  I'm touching the bottom!!" before scurrying back to the steps.  It was a really wonderful time and none of us wanted to go home.

The Friday before Mother's Day, Safi ran in her first track and field event.  She did the standing long jump and the dash and did great!  She was bummed that she didn't get a ribbon but she wasn't in last place, either, so we were able to convince her that she kicked some butt.

So, last entry I said I would talk about a radical idea to help break Nixi's increasing symptoms without med increases.  Two words....Recreational Vehicle.  Stay with me, here.  When Nix is falling down the rabbit hole and her symptoms are amping up I've noticed that changes in scenery can distract her enough from her internal world that she never hit the bottom of that hole. It never lasts and I get that it a desperate and extreme form of distraction but I don't give a shit.  I need to keep this kid as well as possible by any means for as long as possible so we can delay the dreaded Clozaril as long as possible.  Clozaril is the antipsychotic that will more than likely prove the best for her degree of symptoms....its also the most terrifying.  None of the antipsychotics are approved for use in children for Schizophrenia, and when used in children side effects tend to be more common and more severe.  The scariest with Clozaril is agranulocytosis which causes a drop in white blood cells which our body needs to fight infection.  Because this can and has killed patients using the drug the manufacturer has created a program where the patient, doctor, and pharmacist must be registered in order for the med to be dispensed in order to ensure that weekly blood draws are happening because this can be life threatening.  Myocaditis(inflammation of the heart muscle) and cardiomyopathy (enlarged heart) are both concerns, as well as seizures, and orthostatic hypotention (significant drop in blood pressure).  What I've seen on the parent support group that I'm in is that kids taking Clozaril, none younger than age 10, seem to experience Clorazil toxicity often causing them to have to be taken off the med to reverse the white blood cell decrease.  They are then put back on it but at a lower dose and it becomes a vicious cycle of a stabilized kid needing to be taken off meds due to medical reasons, becoming extremely mentally unwell while their body tries to recover, then going back on it and never getting the same result as that first time because their body can't take it.  Don't get me wrong, even at the lower dosage these kids are forced to go to they still do really well on it....but the damage to the body is harsh.  Given that Nixi will likely be on medication for the rest of her life....I'd like it to be as long a life as possible.  So, out of the box thinking.  The RV.  I'd like to try taking the girls on several two night trips within a few hours distance each week this summer.  I think it will break up Nixi's psychosis so it can't get a foothold and as long as there's a pool and kids, Safi will be happy as can be.  So, I'm trying to sell the giant RV we have on the side of the house that's in pretty rough shape to buy a smaller RV in less rough shape.  If it will last us a summer and get us where we need to go, I'm all over it.  Any family out there who thinks this seems like a reasonable plan and wants to chip in, it would be much appreciated.  You can contact Mike or I and let us know.  He thinks this is a good idea, as well, and as horrid as it is to ask for financial help.....if its for my kids, I'll swallow my pride any day.  I'm not looking at anything over $5,000...so we're not looking for a palace.  It just needs to be safe and have a great generator in case we get stranded somewhere.

She's struggling.  She's as happy as she can be, but she's not "stable enough", she's not doing that great.  I don't want to increase her meds because we're only half a mg from having to change meds.  While we're not jumping to Clozaril, the next med in line has its own host of side effects that aren't pretty and because we already know that she experiences extrapyramidal side effects (EPS) on Risperdal, the chances of her experiencing EPS on other meds is pretty good.  So, the RV may seem like a desperate measure....and it kind of is...but some of the best ideas were born out of desperation so we're going to try to run with it.

I woke up sick today and I'm beat so that's all I got for now.

Sarah

May is here.  Mental Health Awareness month.  A little known fact, but Nixi was supposed to be a May Day baby.  She was scheduled for delivery via c-section on May 1st but had to come earlier due to my blood pressure.  I recall dryly joking on the day that she was formally diagnosed with Autism about the irony that she ended up being an April baby just like sister...Autism Awareness Month...had we only known then what we know now.  Not that any other this matters, its just something that sticks with me.

Anyhow, we began the week with me commenting to my friends that I felt we got the meds just right because Nixi was the most "stable enough" that's she's been in awhile.  Without fail, whenever I do this she goes to pot....and she did.  My Wednesday she was very "off" after school, lots of crying and misinterpreting kids at the water fountains.  Continued to escalate the rest of the evening so I finally asked, "What are the people doing today?"......"Saying, 'Let's cook Nixi' while I was at school!"  An hour later, as she continued to be very emotional and irritable I asked her what they were doing at that moment...."They're eating breakfast.  That's weird because its night."  Up until then, this is what Nixi says when the "People" (voices) are quiet.  But this night she then covered her ears and said, "And its so loud because they're eating with their mouths open."  I asked her what that sounded like and she made this horrid crunching noise.  Back down the rabbit hole our little Alice began to slip.  Thursday morning she asked me if I knew of "Dismis".  I thought it was something from a show they watch and told her no, asking what it was.  She then told me that its a land where there is a farm and lots of houses on it that her dad had told her about.  I, of course, texted Mike to see if he had mentioned anything of a farm, land, anything that she could be confusing to which he replied he had not.  A month or so ago when Nixi had said that she was going to live with me forever I had told her that I had a better idea.  That one day I would buy a farm with lots of land and build houses on it so she could live in a house right next to me and help me work with kids like her and her sister...and she could help raise and take care of the animals.  She said she would take responsibility for caring for a pink unicorn.  That was that.  Never spoken of again.  So, it was clear by the end of this week that she her thinking was disorganized and delusional...as when I told her that I texted her dad and he said he had not spoken to her about that she became irate and didn't believe me.  Par for the course with disorganized thinking.  I did remind her that her and I had talked about such a thing, though it was not a land named Dismis, which she flatly rejected.

They had a nice weekend with dad.  Nixi being the "lifeguard" at the pool in his complex which consists of her not leaving the stairs...and Safi dog paddled from one side of the pool to the other!!!!  HUGE accomplishment.

They rode their bikes and had a grand time.  Mike reported that Nix was "always fidgety and wanting to eat" the whole weekend and earlier this evening he could tell that she was having auditory hallucinations (hearing/listening to something) but when he asked her about it she denied it.  The ebb and flow, waxing and waning of schizophrenia.  Sometimes, no matter how perfect the med dosage or circumstances, she's just gonna crash a little.  Nature of the beast.

I'm tired tonight so I'll leave it at that.  Next week I'll share my new, radical, out of the box idea to help us break Nixi's increases from psychotic baseline without increasing or changing meds and also talk about her most important IEP goal that isn't even in her IEP yet....talking to someone other than me and a select few about her symptoms.  Until then, we gear up for a really exciting week of nice weather and Safi's first track meet!  She will be competing in the dash (sprint) and standing long jump!  Shall be interesting!!!!

Sarah

I've been to Spain,

Safi turned 7,

the girls went to the beach for the first time,

Nixi turned 5,

 the Easter Bunny paid a visit to dad's, and we've survived it all so far!  We killed April!

The report from Mike was that the girls adored the Monterey Bay Aquarium, Nixi freaked on the beach because she was getting stuck in the sand (essentially the same thing that freaked her about the snow, her feet sinking in) but he found some things for her to do like build a sandcastle, and Safi absolutely loves the ocean.  Mike said she was flapping/happy hands the whole time and she didn't even lose it when a wave knocked both her and him down.  Total raging success!

Nixi's Chuck E Cheese party was overstimulating and overwhelming but all of our dance class friends came to show their love and there were more squeals of delight from Nix then the few screams of terror.  Again, raging success.

We've been struggling to get back to our routine and decompress from all of the fun and changes.  Safi had a few rough days at school, Nixi having random meltdowns...but all in all, I'm absolutely stunned and proud of how far we've all come.  Never in a million years would I have thought I would be able to leave the country for over a week, let alone at their current ages.  Major props to Mike for doing a great job with them and bottomless thank you's to Emily, Heather, the glue that keeps this crew together and the grease that keeps the wheels turning.  Our world has just expanded and grown so much in the past nearly year that's its mindblowing.  Its not been without growing pains, and there are more to come I am certain.  But it is unequivocal proof that we can do ANYTHING.  We will survive and THRIVE.  We are one badass bunch.

That said, its time for my annual  love letter to Safi...and my letter to Autism.  If you've been with us and this blog over time you know that I usually do a love letter to both girls...Nixi's is coming next month, as May is Mental Health Awareness month.

Dearest Safi of mine.  I cannot begin to tell you how very proud I am of you.  You are the bravest spirit I've ever known.  Every day you wake up to the barrage of sensory assaults the world has to offer and almost always brush them off with a slight nose crinkle or a laugh.  Even though its still difficult for you to be hugged, you back up to me or snuggle into my arm on the couch and you love.  You bound of the car each morning with a smile on your face whether you cried at home because you were nervous about going 5 minutes earlier or not.  And when I tell you to have a great day you always yell back as you're scurrying off, "Have a great day, mama!" without so much as a glance back.  You are NAILS!  Your enthusiasm for learning is endless, so much so that it can create difficulties for you when you have to skip a part of class to be pulled out for speech therapy or some other therapy.  You are proud.  You are a proud young woman living with autism and you know that, you know what it means, and YOU, more than anyone else, know that you have every right to be proud because your life isnt easy but you refuse to lead a life that is anything less than extraordinary.  Your pride continues to be your single most difficult and simultaneously admirable quality.  You don't want extra help, you want to know how to do everything perfectly right now, and you are grappling with the fact that no one is perfect.  You, my love, my heart...you are perfectly imperfect and that's what makes you unique, special, wonderful, and breathtaking.  My wish for you today and my wish for you always is that you be kind to yourself and that you allow others in so that they can be kind to you, too.  Its true, there are people in the world who are mean and cruel.  Again, something you know better than anyone else, but it is my hope that you will learn that a laugh, a glance, or even a tear can all be signs of absolute joy, adoration, and love from those who are simply just better for being around you....and they know it.  You are loved.  You are wonderful.  You are beautiful inside and out.  You are my daughter...and I love you more than the stars and the moon.

Love,
Mom

 Dear Autism, you've packed some punches this year.  You've forced my daughter go on psychotropic medication just to get to school each day.  You've given her this tremendous gift for learning at a pace that matches the speed of light, then cut her off at the knees as she tries so hard to navigate the social structure that houses that knowledge.  Always giving with one hand, taking with the other.  But this year we got you pegged.  We get it, we get it.  Sensory issues are worse when she's stressed.  Minutiae and routines rule the day when she's excited or nervous.  Socially, she's just not as sophisticated as her "peers" which damages friendships.  But what YOU don't have pegged is US.  You have no idea that a half hour or so after social blow outs Safi, of her own initiation, apologizes to her "peers" and has managed to eek out a few real friendships.  You have no idea that it is Safi who comforts her sister and helps her be brave when she is anxious, despite her own internal state.  You have no idea that every night before bed Safi gently and lovingly tucks each of her dogs in a blanket and gives them soft kisses on their foreheads with wishes of sweet dreams.  We know a whole hell of a lot more about you than you know about Safi, about us as a family.  I lovingly accept you in my daughter's and my family's life and I place caring but firm boundaries around you to bind you from defining who my daughter is as a person and who we are as a family.  I celebrate you and all that you mean to my daughter and my family this month, I curse you during others...but this year, in general, I give you a warm hug.  You're okay.  Safi's okay.  We're okay.  And with that I say, take care, see you in the morning, and don't screw with me or my crew or we'll have to put you in your place.

Love,
Sarah

Big gift for the big birthday girls...real deal bikes


Chuck E Cheese ticket blaster...potential disaster, pure bliss!

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