They're Baaaack

Cold weather, short, gray days.  People with mood disorders don't fare well in these circumstances, and Cassie is no exception.  We're battling about school again.  She's scared, having problems with friends, eating nonstop, just wanting to curl up and block the world out.  I can see it in her demeanor, her hygiene, her eyes.  It's not very bad yet, but getting there.  She's angry, cussing, focused on 'getting stuff', and never satisfied.  The swimming she was so excited about (and I paid $200 for her to participate in) has lost its luster.  She's still going, but I can see it getting harder every day.  The change in trimesters freaked her out, even though she only changed one class. 

I know it's the voices, but she's been so urged to articulate voices in other ways (I'm stressed, I feel bad), that she doesn't talk about them constantly like she used to.  I have mixed feelings about that.  There's a part of me that feels it's unhealthy to suppress and realign your reality to conform to what you're told.  Yet, I understand that she needs to realize that 'voices' are not separate entities, but her brain reacting to stress.  Because of her cognitive impairment, most of the professionals who have seen her have questioned whether it was truly psychosis at all.  All I know is that it is real to her and she is terrified when they are screaming at her.  Make of that what you will.  I personally can't imagine my own mind being at war against me.

The difference this winter is that we have adjusted our lives to coexist with this illness.  We don't accept all bad behavior just because she's sick, and have learned to set boundaries.  I feel so much compassion toward her, but am wary of coddling, as this really only exacerbates the problem.  We try to keep busy because downtime is time to ruminate and that's bad.  Flexibility is essential in most cases.  Yet, we have to be firm and consistent when it comes to situations like school and church.  Last year she wasn't able to regularly attend either, so we have come a long way.

I try not to muse too much about her future.  Because like the girl with the curl in the nursery rhyme, when she is good, she is very, very good.  But when she is bad she is horrid.  Her goals include job and marriage and family. If she realizes these goals, what would she do when she got like this and had to deal with it herself?  I know I'll always be a part of her life, but there will come a point where my control will have to loosen and what then?  Like I said, it's not good to dwell on these 'what ifs'.  However, I know I need to be prepared in some sense...how does one do that, exactly?

The Eye of the Storm

We were reminded yesterday of the fact that just because Cassie is doing well at the moment, that could all turn on a dime.  Gary and Missy are home, with their intendeds (is that a word?) and the house is chaotic to say the least.  Yesterday Cassie expected them all to pick her up from school and watch her swim for a bit.  However, Missy accepted a dinner invitation which prevented them from doing so.  While that would be a disappointment for any kid, it was devastating for Cassie.  She howled most of the way home, threatened to kill herself and others, swore, spit and transformed into something just shy of a fiend from hell.  The episode extended into the evening and everyone in the house, both family and visitors, got a taste of life with Cassie. 

What was I thinking, allowing that to happen?  My only defense is that when things are good, I quickly forget how bad they can get.  It's akin to what happens after giving birth.  The pain of childbirth is unbelievable.    The only way I could've done that three times is because a veil of forgetfulness falls over you when you see that baby.  Just so, I've been lulled into complacency by the blessed mundane-ness of life lately.  I'd forgotten that, lurking beneath the surface of this normalcy is a beast waiting to be unleashed. 

Last Thanksgiving Cassie ate her dinner in the hospital.  It was a sad and lonely day.  I know I can't always protect her from disappointment and the results of such, but I can be more diligent in recalling what life is like in the eye of the storm and doing what I can to protect us from it.  I can be thankful for today, while remembering the past so I don't have to repeat it.  Today dawned a new day.  Cassie went off to school as usual, but let that be a lesson to me!

Weird Families

*2013:  I found this in drafts and decided to go ahead and publish it.

Have you ever tried to describe your family to someone who doesn't know you?  That's what I tried to do the first time I spoke with Missy's future in-laws.  I was trying so hard not to be weird and then for some reason I felt compelled to say, "you have to meet us to believe us."

I've been around enough families to know that EVERY ONE of them has their idiosyncrasies and plenty are WAY weirder than us, trust me on that.  I like to think we're a GOOD weird, a funny weird, a 'gosh-they're-great-but-aren't-you-glad-you're-not-one-of-them' weird.  Of course, that's probably what every family would like to think...yeah. If there's an inappropriate thing to be said, we'll probably be the ones to say it.  If somebody farted, it's probably one of us. 

For instance, maybe about three years ago we brought Cassie to a sit-down dinner wedding reception.  Now I knew her name wasn't on the invitation, but I didn't have anyone to watch her and I figured, what's one more (major social faux pas, I KNOW!).  Then, I thought it would be cute if she participated in the catching of the bouquet.  Problem was, she caught it.  She, of course, was thrilled.  I'm actually surprised that family still speaks to me. 

Over a decade ago, while picking out my dad's casket I tried to joke with my sister about the fact that given the way he'd pickled himself with alcohol, he'd probably preserve pretty well.  She was not amused.  We inherited his car and we called it the DMC (Dead Man Car).  Gary's dad passed away the same year, so we had all kinds of DMS (Dead Man Stuff).  I guess you'd call us...irreverent?  Certainly not insensitive!

One time I thought it would be really cute for Mother's Day to make a special gift basket for my mom.  My thought was that I wanted her to be selfish for a day.  So I bought a "Self" magazine and added "ish" to the title and included things like bath gel and nail polish.  Although she was gracious, the confused look spoke volumes.  I sent my sister a note outlining all the ways we are different.  Not sure how that was received, since she never mentioned it.

I'm sure if I wracked my brain, I could come up with countless stories, but you get the picture.  Hey, we're on the road to perfection, I didn't say we'd arrived.

School Part 1

Historically, school has been an institution of torture for Cassie.  Her formal education began at age 4 when she was enrolled in a pre-primary impaired (PPI) classroom in a nearby town.  Thus began her days of coming home 'mad as a hornet'.  We figured she held it in the best she could all day, but when she hit that door, all bets were off and she unleashed the fury, or rather, frustration she felt at being placed in a world she didn't understand. 

I never received phone calls from school about her behavior, she was 'fine' and early on, teachers may have sensed immaturity, but nothing majorly concerning.  (She always had an IEP, so special ed was a constant.)  By the time she was finishing the 3rd grade, the teacher explained she would be 'placed' in the 4th grade.  Further explanation revealed that 'placement' meant she hadn't met the criteria necessary for passing the 3rd grade, but would be moved up regardless.  The current thinking is that 'holding back' kids is not beneficial from a emotional and social standpoint, which I tend to agree with. Everyone is familiar with a cartoon image of an overgrown kid sitting at a too small desk amidst little kids who are invariably laughing at him.  No one wants their child to be that laughingstock, least of all me.  But the fact that your child isn't passing grades is a hard pill to swallow, nonetheless.

Not sure where her education was really going, if she was learning, or how to help her, school rolled on.  5th grade was even what I'd call successful as she had a bright young teacher who engaged her and I believe she made some advances that year.  Middle school followed, which proved disastrous.  The IEP (Individualized Education Program) which seemed inadequate up to that point, fell apart when budget cuts led to special ed teachers integrating in the regular classroom in what is called 'push in' support(get it, opposite of 'pull out?').  Hesitant about how this was working, I spent a day at school with Cassie.  What I saw was a kid who had no clue as to what was going on around her, who quietly sat where she was told to sit and moved from class to class and took absolutely nothing away from the classroom but the further conviction that she was not a part of it.  Because she wasn't the squeaky wheel, she was being left to sit in her own world, which was crumbling, day after day. 

Don't read me wrong...I DON'T blame the school.  Public schools are so overburdened with too few resources and ever increasing needs of students.  It is a parent's job to seek out, to the best of their ability, the necessary support for their child.  It's my job to research, read, reach out, counsel with professionals, do whatever is needed to help her, myself and others who are trying to help her.  But none of us, I least of all, knew what to do, where to turn, in which direction to go.  I'd tried for years without satisfaction to find someone who could define the problems at hand because without that, how do you begin to help? 

Along the way, we had the pleasure of working with some remarkable individuals.  A Special Ed teacher in elementary school really clicked with Cassie and got through to her.  The school Social Worker in middle school was our main source of support during that difficult time.  She was amazing and went so far above and beyond the parameters of her job that I can't express my full appreciation for her.  To run across an angel like her from time to time gives one HOPE, something that can seem in short supply when you have a special needs kid. 

Middle school started the really bad cycle of refusal to go to school.  The really, really bad days I'll leave for another day, another post.

This morning, Cassie could hardly wait to get to school.  She was so excited about her new Hello Kitty hair ribbons and the fact that she'd lost 3 pounds (weight gain, I'll have to write about that) and seeing her friends (she has friends!) that she waited for the bus on the front porch by herself and left when the bus arrived without a backward glance.  I never thought it would be so easy and I've rarely been more grateful for anything else.  Her IEP team reconvenes this month and Gary and I will don our battle armor once again to fight the good fight so that Cassie can keep having good days.

Wedding Jealousy

Cassie is pretty much livid at Missy for getting married.  This isn't a new feeling for her; she's ranted over every event that moved the spotlight one iota off of her since she was old enough to comprehend emotion. It typically, but not exclusively, involves Missy. When she was  very small, we had to wrap up one of her toys to give her on the other kids' birthdays.  We have video of Cassie at Missy's 12th birthday party,  red-faced and teary one minute, and charging through (and breaking) the limbo set the next.  At Missy's 16th birthday party, Cassie, who had been sent to bed, opened the bathroom window which overlooks the backyard pool deck, and spit on the head of one of the guests.  She SPIT on him...I am not kidding. 

If it were just jealous fits we had to deal with, it might not have been so difficult.  Any simple request from us or a denial of her demands would result in an explosive reaction.  The threat of these emotional explosions loomed large over every interaction with her.  I imagine about now you're thinking, "the only challenge this kid faces is irrevocable spoiling!"  I know you think that, because I struggled a LOT with this thought myself.  How could this tiny tyrant so control our home, our lives?  I blamed myself and, it seemed that my family blamed me, too.  I felt alone in my conviction that something was amiss, that this wasn't ordinary behavior, but I didn't know how to alleviate the situation, so I quelled it the best I could.  Gary and Missy felt overlooked, underappreciated.  My husband was certain a good whack on the butt would cure her of her misdeeds. It affected all of us in different ways.   

Right before the 6th grade meltdown, I'd gotten ahold of a book called The Explosive Child   by Ross W. Greene.  After reading this book, I FINALLY allowed myself to let go of HER emotions.  I read about other inflexible, explosive kids and realized we were not alone.  The book taught me to prioritize and limit my expectations and rules for her according to what was really necessary for her well being and that of the family.  This new level of understanding helped Gary and I tremendously and put us in a proper frame of mind for what was to come.  If we had held on to our preconceptions of how children 'should' act and hadn't learned to let the little things go, I firmly believe we would not be where we are today.  You can't imagine how liberating it is to discover you aren't the bad parent of a bad child.

Back to the wedding issue.  Cassie got herself a wedding ring set at Claire's with her allowance.  That cured ring jealousy.  She wanted a beautiful white wedding dress to wear to her sister's wedding, but that was non-negotiable.  So she's settled for a tea-length tulle and pink satin 'bridesmaid' dress, although all the other bridesmaids will be wearing a different dress.  She actually spoke to Missy on the phone for 5 minutes the other day, which was the first time since she got engaged. I realize the concessions we make go beyond what most parents would deem reasonable or even acceptable.  Having a kid like Cassie teaches me to look beyond 'normal', 'reasonable' and 'acceptable' because those are standards set by people who aren't Cassie's parents.  At the end of the day, it's about our accountability to ourselves and God, and other opinions just don't count.  We can't predict exactly how she'll handle all the upcoming festivities that revolve around Missy, but I expect to have some blog fodder before it's all finished.

Obsessions

Part of what makes Cassie special is her single-mindedness when it comes to likes and dislikes.  I don't think she knows how it feels to be ambivalent, on the fence, or undecided about things that are important to her.  You'll NEVER have to guess, for instance, about her feelings toward Hannah Montana, a.k.a. Miley Cyrus. HATES HER, absolutely, unequivocally, abhors every atom of her being.  There was a time, not long ago, when she truly wanted to KILL her.  Now, that, of course, is the illness talking and she has no actual means of killing Miley Cyrus, but that's how strongly she detests a celebrity, someone she's never met.  When we first started down the road of hospital-worthy psychosis, Cassie had a list of 'enemies'; mostly popular girls she hated, and their voices would get inside her head sometimes.  She did have a go around with a few girls at school who had singled her out to some extent, so her feelings weren't completely unfounded, but the depth of her hatred toward certain people and things  can be very extreme.

On the other side of that coin, however, is intense love and joy derived from her latest obsession, which usually varies from year to year.  When she was younger, there was never any doubt about what to get her for Christmas, whether it be My Little Pony huge behemoth plastic playsets complete with tinny music and flashing lights, or more Barbie crap or Littlest Pet Shop, or Webkins #4,968.

Later, she moved on to video games and music.  We LOVE American Idol and a few years ago David Archuleta became the center of Cassie's existence.  Now, my husband will argue with me on this, but I swear she literally thought she was going to marry this kid.  She was 12 and he was 16 or 17.  He, like us, is a Mormon, he seemed super nice, and he sang like an angel...what else did she need to know?  Little by little, the shine wore off as she discovered that he didn't plan on going on a mission and the final blow came when I told her it was actually ILLEGAL for him to marry her.  So, last year she moved on to Adam Lambert.  Yes, he's gay, but that doesn't deter her one bit and now she intends to marry him; she'll simply 'change him'.  The fact that he's 28 and she's 14 doesn't bother her, either. 

I try to point out the unlikelihood of these goals coming to fruition, but it doesn't do one bit of good to argue with her and eventually the illogic of her plans dawn on her and she moves on to the next thing.  Plus she gets REALLY mad when anyone tries to get between her and 'her dreams'. So we do what we always do when Cassie is dreaming the impossible dream...glaze over and noncommittally nod our heads.

The main focus right now is anime.  If you don't know, anime is Japanese cartoons.  When I was growing up, we just thought these cartoons were cheesy and cheap (Speed Racer?!), now they're all the rage, at least in my house.  For Halloween, after angsting over her choice for months,  she dressed up as some anime character that looks like a samuri, but is really a 'soul reaper'.  It's called 'shinagame' or something like that.  Everyone was supposed to know this.

Oh, and DOGS.  Dogs have been an obsession for about 3 years now, which is somewhat of a record.  This summer she got another dog to add to the one we already have.  So there's Luna, the mutt, a 12 pound terrier and WYD (who's your daddy) mix, she's the new one, a rescue from an Amish puppy mill (?!)  Then, there's 8 year old Broc, a Kerry Blue Terrier...he's very regal, a former show dog; grand champion and all that.  The whole show dog thing was NOT my idea and let me tell you, purebred show dogs eat and poop the same way mutts do. She LOVES them, they are her BABIES.  And she insists I am their grandma (gag).

But the cool thing about Cassie's obsessions is that they become part of her identity, which sounds normal, and is to a degree.  Her screen names change from doglover to animelover to ilovedavidarchuleta according to her focus.  When nothing, it seemed, could give her joy, we could, with great effort, draw her out with something she had formerly loved.  Gary, my husband, would bring his laptop to the hospital and we'd go on youtube and watch puppies doing silly things like 'saying' i love you or jumping rope or some other improbable undoglike thing.  Now that she's doing better, it's so much easier to relate to her by tuning in to the activities she likes.  Her formerly narrow interests have broadened to include singing in choir and swimming and cooking.  She amazes me with potential I didn't know she had.  And when Cassie is happy and doing something she loves, she hugs herself and joy just seeps out of her and onto you.  More than anything, though, she loves me with every fiber of her being, and I love her back in my inferior way.

Gohonkas

Do your kids make up words?  Or do they hear things differently than they are and end up saying silly things?  Cassie was, and sometimes still is,  the queen of 'unwords' or 'lexical innovations', which have become the delight of our family. Pocohantas was Gohonkas, parade was hurrade (combination of hurray! and parade?), paparazzi morphed into pepperanzi (sounds like a specialty pizza).  These are just a few of dozens and I wish I could remember more.

Names were another source of silliness, as Kate became Cake (she actually adopted Cake as a nickname) and Scott was called Sock (he didn't care much for that one). Sister Missy was just See (an abbreviation of an already abbreviated name), but brother Gary became The Boy which made sense because he was the only boy child, but a rather generic label, one has to admit.  Cassie wasn't the only one.  I think it was Gary who dubbed Ann Arbor 'Man Arbor'.  Missy just wanted to be a flying pony.  Really, she wanted to BE one.  Maybe she still does, but at 21 that's just not cool.

To be honest, sometimes I corrected the nonsense words and sometimes I didn't.  I'm sure child development experts would be all over me about that one, especially in light of the issues she deals with.  But it was so cute (I mean, come on, GOHONKAS?!  We'd start chanting, "go honkas, go honkas, go go go honkas"), and she seemed so certain of the things she said (and gets so angry when corrected!) I often let it slide, all while struggling to keep a straight face.  Nowadays, we don't let her flub words as much, as what was cute at 5 is frowned upon at 14.  But Cassie's lack of sophistication will always make me chuckle and endear her to me, whether she's 14 or 40.

My First Post, an Introduction

As I watch the news this morning, I realize there are worse situations to be in (shootings at Fort Hood).  Isn't that always the truth?  I'm talking about Cassie, my youngest daughter.  Cassie has an older brother and sister.  She's 14, sister is 21 and brother is 23.  Sister AND brother are getting married within the next 6 months.  I found all this out mere weeks ago.  At first I was freaked out, as you might imagine, especially since I've never met either of the people they intend to marry and I have to pull off Thanksgiving dinner for 16, help with a bridal shower, travel to another state to participate in my daughter's wedding, all before Christmas.  After Christmas I'll have a houseful of guests and I get to pull off (and pay for) a reception here on January 2.  Post initial freak out, I put things in perspective...after what we've been through with Cassie, this really pales in comparison.  And these are happy life events, not devastating life blows.

Cassie had developmental challenges from about age 2, when her speech noticeably lagged.  This discovery started the merry-go-round of evaluations, special programs, failed friendships, IEPS, etc.  School happened to Cassie and she hung in there with moderate success through 5th grade.  Middle school hit and with it puberty, a bad teacher, social stress, and full blown psychosis.  A voice telling her to kill herself played a continuous loop in her head all day, every day.  It varied from a "devil" voice, to that of her "enemies'" to her own voice.  She became violent, hitting, kicking, pinching all within reach.  I learned a strait jacket hold.  She became someone we didn't know, someone we didn't want to know.  It was terrifying.  Thus began the revolving hospital admissions, 5 in all, between April 2007 and January 2009.  During that time, she went through several medication changes, and the combination of varying side effects and symptoms caused her behavior to range from raving madness to drooling zombie and everything in between.  Cassie suffers from schizoaffective disorder and cognitive impairment. 

At present, Cassie is the best she's been in 3 years.  We understand so much more and her symptoms no longer frighten us.  After many attempts, we have found excellent outpatient care for her.  She has begun to take responsibility for herself and her actions and, while she recognizes the fact that she has limitations, she has dreams and goals for the future.  We know the good times may be but  a reprieve, but we accept that and thank God for the lulls.  Life, which had become a whirling vortex with Cassie at the center, has attained a new normal.  The new normal is OK, even very good at times.  Joy has returned, we laugh, we enjoy one another's company.  The last two days, my girl got off the bus and reported she'd had a GOOD day at school!!  Can't remember the last time that happened.

This is only a thumbnail sketch, obviously, and perhaps I'll go into more detail in the future.  I prefer to exist in the present, and I intend to regale you with our extraordinary life challenges.  As for now, I've got weddings to plan!  Stay tuned!  And BE THANKFUL FOR WHAT YOU HAVE...