Part One - "You Ain't Seen Nothin Yet"

We’re living in a house where there’s no heat in the littlest bedroom.  And since Cale has to have his own bedroom, while the rest of us have to share bedrooms, he’s the one who gets the littlest bedroom.  So every night, just before I go to bed, I unlock and open Cale’s bedroom door.  I peek in, making sure that he’s sound asleep.  Then I leave the door open so as to let some heat into his room. 

He hasn’t tried to escape from the house during the middle of the night yet, but he has escaped a few times during the day.  It’s incredible how good at it he is.  Once he puts his mind to it, it takes him roughly seven seconds (about half the amount of time it takes for me to pee) to find a way out of the house and get himself into the street.  And we live on a corner now, where people seem to drive by really fast.

We let most of the neighbors know about Cale’s Autism last summer (when we were here for six weeks) after the first time he got out (the time when one of the neighbors almost hit him with her car).  We let them know that he has the gross motor skills of any five year old, yet seems to still have the brains of an infant.  After that we put a lock up high on the front door, but he’s still managed to escape a few times after one of my other kids had forgotten to lock the high lock. 

Cale’s been studying the high lock on the front door lately.  It hasn’t occurred to him yet that all he has to do is push a chair over, but it will soon.  And he knows full well how to unlock the back door, it just hadn’t occurred to him to do so until about three days ago.  Now I find him in the back yard all the time, which is fenced now thanks to my husband.  But we’re still planning to put a high lock on the back door.

In a nut shell, I just don’t sleep very well knowing that Cale’s bedroom door is unlocked at night.  Instead, I wait.  And every night, sometime around 2am, I hear him.  It sets off my mommy emergency alarm every time.  I shoot into a sitting position.  It never ceases to amaze me how I can be floating peacefully around Flathead Lake one second, yet be in my bedroom, upright and listening with my entire body, the very next. 

He usually wanders around for a minute or two, checking each room in house for fairies (I wish!  Actually he just follows some kind of Cale created pattern).  Then he patters his sweet little feet into my bedroom and gets into bed with me to warm up.  

I quite love this actually, because the only time he ever holds still is when he’s asleep.  Well, that’s not entirely true.  He’ll sit in one particular chair in our living room and rock back and forth listening to music for hours, but I don’t get to snuggle him during that time (not without a lot of screaming anyway).  The only time I ever get in the really good snuggles is when he’s chilly and sleeping.

One night, he was wearing the fuzzy, pale blue pajamas that my aunt had gotten him for Christmas.  He’d had a bath earlier and still faintly smelled of lotion and toothpaste, so he was particularly snuggle-able.  Within just a few seconds he had completely taken over my pillow, but I didn’t mind because he was so damn cute I could hardly stand it.  Then he fell asleep. 

I was right in the middle of savoring a long, warm, snuggly snuggle, when it suddenly, and quite dramatically, occurred to me that I had never prayed for Cale.  That’s not entirely true actually, because I thank God for Cale all the time.  But I had never tried to illicit any kind of cure for his Autism before, and I got thinking hard about why that might be.

I’ll tell you why I think it is.  I’ve been taught that Autism isn’t a disease in the traditional sense - that it’s a disorder of sorts instead.  And a disorder, by definition, has no cure.  I’ve been told to accept that my son’s Autism may simply be “who he is.”  Therefore, praying for a cure seemed rather dangerous.  What if the only “cure” for “who he is” would be for him to get hit by a fast moving truck?  That’s why I hadn’t prayed for a cure.

I must admit that I’ve gone back and forth with the disease thing though, because I also cannot imagine that God would create a little person who seems miserable more often than not, and then simply call it “who the little person is.”  It must be a disease, even if only in the spiritual sense of the word (defined as “dis – ease”).  I also know that a person can have Autism and not be miserable all the time.  I’ve seen it in my daughter.  Sure she experiences problems, but she experiences a lot of joy as well.  My son, however, just seems so miserable so much of the time.

I decided to pray.            

My prayer went something like this:  “God - I pray for your will for Cale.  But I’d really like to see you cure anything that’s wrong with him that can be cured, if it be your will.  And I promise that I’ll always love him no matter what.”

The next day, I had a lovely day with my husband.  It was a fluke of splendid nature that my kids had to go back to school the Monday after Christmas break, even though it was a national holiday and my husband had the day off.  A day with my husband WITHOUT my kids!  I love Montana.  Nothing like that glorious day EVER happened in Arizona, EVER.

We spent the morning wandering around downtown.  We ate breakfast in a quiet restaurant, got a screaming deal on used refrigerator, and then went to Lowes to buy supplies for our big “finishing the basement” project (which will include running a heating duct up into Cale’s bedroom).  After we got our errands done, we went to Barnes and Noble to look at home magazines and drink coffee during our last hour of freedom.    

I really didn’t mean to walk by the Autism section because, like I said, it was my last hour of freedom. My intention was to use the bathroom as quickly as possible and then spend the rest of the hour sifting carelessly through home design magazines.  However, a book caught my eye.  It was The Natural Medicine Guide to Autism.  

I opened it up and read, “This book is here to tell parents of Autistic children that you don’t have to accept that there is nothing you can do for your children beyond remedial intervention to help them live more easily with their limitations.  You also don’t have to accept that pharmaceutical drugs are your only “treatment” options.”

That old knot sprung right up out of my stomach.  I wanted to put the book down in favor of a nice architectural history of the Craftsman Bungalow, but I didn’t.  I flipped to another page and read on, “if I interfered with what she was doing by picking her up, she would just stiffen and scream… At three years old Angela was still totally non-verbal.”  (Big deal – my son’s almost six and still totally non-verbal). 

“After hearing about allergies that affect the brain, Donna took Angela, who by then had been diagnosed with Autism, to a doctor who specialized in neurological allergies.  “Now, one year later, Angela is a different child, as if she was never that bad and all the heartache was a collective nightmare for our family.””

Yup.  And this, “Victoria wasn’t seeking help for her daughter’s autism, however – because she didn’t think help existed.  Nothing had worked and now her daughter was a picture of “failure to thrive.” 

“Victoria took her daughter, Hayley, to a clinical nutritionist (a Ph.D. level one by the way), and, after beginning an individualized nutrition program, “What was astonishing was that Hayley’s autistic symptoms began to disappear…. Her twin sister, who was not receiving treatment, remained the same as before.””

If you’re not an autism parent, you might now be thinking, “Sounds like great news!  Did you buy the book?”  But if you’re an Autism parent whose child, at almost six years old, is still communicating exclusively by screaming and hurting people instead of talking, one whose never gotten any REAL answers for your child, are you now feeling what I was feeling at that moment? 

Let me try to put into words how these kinds of stories tend to make me feel… imagine Shirley McClain emerging suddenly from the depths of my skin, leaking profusely out of every one of my pores, and screaming torturously at the top of her lungs, right there in the middle of Barnes and Noble, “GIVE MY DAUGHTER THE PIIIIIIILLLLLL!!!!!!!”  And this is putting how it makes me feel mildly.

I have taken my son to every kind of conventional medical professional that you can possibly imagine (pediatricians, developmental pediatricians - we were once on a waiting list for almost a year to get into, rumor had it, the best developmental pediatrician in Phoenix, but they called the week before our appointment and let me know they’d reorganized and that we wouldn’t be getting in – psychologists, psychiatrists, Autism institutes, cardiologists, allergy specialists, ear nose and throat doctors, G.I.’s, and nutritionists.   

They’ve all managed to diagnose the Autism, and nothing else.  Well, that’s not entirely true.  The allergy doctor informed me that Cale’s allergic to dogs.  But, seeing as how we don’t have a dog, I really don’t see how this is pertinent information.  And the psychiatrist watched Cale for ten whole minutes before putting him on a heavy duty anti-psychotic, which we’ve had to up and up and up to the point in which he has now almost reached an adult sized dose, yet that has, once again, stopped working.  

So my question is - if the kind of help this book describes can be given by doctors, then why haven’t any of our doctors given us, or at the very least directed us towards, such help?  Why have they been so content to not give a shit?  GIVE MY SON THE PIIIIIIIIILLLLLL!!!!   

I was in the middle of Barnes and Noble, with people all around me, walking back to Shane with this stupid book and that old disastrous rage all flared up in me again, holding my eyes wide open so as not to let the tears escape, when they managed to leak out anyway and roll down my face right in front of everybody.  “Oh look!  There’s a crazy lady crying in the middle of Barnes and Noble.”

I got to the table that Shane was sitting at and set the book down on it.  He looked at it for a second and then looked right back at the magazine he was reading, not because he doesn’t care but because he, too, has already seen a hundred varieties of the same damn thing.  It was our last hour of freedom, and he was smart enough not to bother wasting his time.

I bought the book anyway of course.  And, later that afternoon, found myself wandering through the health food store, scratching my head at all the stuff that’s available, and finally deciding to give Cale four times the vitamin B6 than is recommended by the FDA, along with a magnesium supplement, because my new book says this combination is the only way to see B6’s actual potential. 

The problem I encountered immediately upon returning home was this - how do you get that much vitamin B6 into a kid who can’t stand grainy textures or strong flavors, when they don’t have B6 in liquid form?  I mixed the powder in the capsules with a ton of sugar water to sweeten it, but Cale still vomited before getting it down.  And it all caught up to me, all at once – all the things that we’ve tried and the fact that Cale’s no better off as a result of any of it.  I began to cry.

Of course, life always has a funny way of easing my mind at the moment I need it to, if I let it.  Just then, Isabel handed me a book from her school library and insisted that I read it to her.  I stopped and read her the story.  It was called, A Bad Case of Stripes.

In the story, the main character is a little girl who is a people pleaser.  She gives up the one thing she loves the most (lima beans) so that everyone else will like her (because everyone else thinks lima beans are gross).  After this she catches a disease in which she literally becomes a physical manifestation of who others are or what they want to see. 

She starts out with stripes on her skin, but when the kids at school call out, “stars,” the stripes turn into stars, “spots,” they turn into spots, etc.  When the doctors try to help her with medication, she becomes a giant pill.  When the herbalists try to help her, she becomes a giant plant.  And when a new age hippy tells her to relax and become one with her room, she does.  Literally.  The pictures on the wall become her eyes, the bed her mouth, etc.  Finally, a little old lady comes to her house and gives her some lima beans.  She eats them, once again becoming okay with who she is in spite of what others might think, and is cured of her “dis-ease.”

I don’t know if it’s just that this particular story showed up at just the right moment, or what.  I’m mean, I’m an educated woman.  Should I really be getting profound insight from children’s stories?  But I had reached a level of desperation, once again, that left me open to anything.  I took it seriously.  As a result, that little story settled me right down.  And, when I think back on it, I think this might have been my very first step out of the box.  

Just for clarity’s sake, there are two pieces of insight that I got out of that story.  The first was that my son had become who other’s (including myself) had made him.  Autistic.  Non-verbal.  Problematic.  Etc.  And I realized that my son will always be, for me, whatever I see him as.  So I decided to quite thinking that I know what, or who, that is.    What’s important, first and foremost, is that he’s as healthy and happy as possible, so that who he really is (whoever that might be) can shine.    

This freed me from all sorts of fixed ideas about what I think my children with Autism need, and led me to this prayer, “God, help me to forget everything I think I know about my kids, so that I can have an open mind for a new experience.”  Yeah, I stole the basic tenants of this prayer from somewhere, but I can’t remember where so I can’t give proper credit at this time.

The second bit of insight I got out of that story made me giggle at myself.  Reading three pages out of some book and then rushing to the health food store in search one thing that’s a cure for Autism, sort of reminds me of that commercial in which the guy gets on the scale to weigh himself, gets off the scale and runs around the track one time, and then gets back on the scale and hits it (surely it’s broken!) because he hadn’t lost any weight by running around the track one time.  I love that commercial.

I realized that, in addition to setting aside what I think I know, it’s probably going to take some real time and some real research and some real effort to get new insight into my son.  I realized that I can’t do it alone, yet that everyone I turn to for help is going have different kinds of answers, none of which I can afford reject outright even if I get conflicting advice.

I can’t believe everything AND I can’t NOT believe everything.  None of it’s true and all of it’s true, if that makes any sense.  In fact, I’ve come to think that the whole concept of truth might be a bit of a limitation in and of itself.  I don’t have to worry about whether or not something is “true.”  All I have to know is that if I've prayed for God's will, and something is right there in front of me, it’s right there in front of me for some sort of reason.  It may be there to help me examine different possibilities, or it may simply be there to lead me to the next thing.  So I just keep praying for healing (if it be God's will), keep doing the footwork with as open a mind as possible, and keep trusting that God is putting the next right thing in front of me. 

The results have been truly fascinating so far, so much so that if nothing but the journey itself comes out of it, it will have been totally worth it.  I’ll have to tell you all about it in my next blogpost though, because today is Saturday and my kids are all looking at me like, “What are we doing together today mom?”  It’s time for me to go and put up a tent in the back yard and teach my kids how to pretend camp.  Maybe we’ll sleep in tent in the backyard tonight, even though it’s still pretty cold outside.  I bet I would get some really good snuggles in then!           

Enough

My dad called a couple of weeks ago and said, “So?  What’s going on with your blog?  Have you just… sort of… lost interest?  Or what?

It’s not that I’ve lost interest.  It feels like I’ve just been terribly busy.  And that’s an excuse that I, of all people, can get away with, don’t you think?  After all, I have three kids, two of whom have autism.  Anyone could believe that I’m just too busy - too busy to write, too busy to meet with friends, too busy to be a daughter, sister, wife, or mother to my only “non-autistic”child.  I could use the Autism to be “too busy” for all kinds of things.  But it’s not really that I’m too busy.  That’s always just an excuse for not doing the thing that I really ought to be doing.

The truth is that I’ve been rather scared.  And when I’m scared, things don’t appear to me to be going as well as they probably really are.  Not only have things appeared to me to not being going well, but I’ve also really wanted for them to go well.  I’ve really wanted to be able to write, “And then we moved back to Montana and lived happily ever after.”  And I think that I’ve just been, sort of, waiting for that to happen so that I could write it down.

One of the gifts that’s come for me out of living with Autism is the fact that I can see things more clearly, things that I wouldn’t have paid much attention to if I hadn’t had my kids in my life.  And the thing that I’ve been seeing over and over again lately is just how powerless I am of and by myself.  Fortunately, however, there are always people there to help.  I never have to walk through anything alone.

The move itself went quite a bit better than we thought it would.  We thought that it would be hard, especially considering that Cale can barely handle the repositioning of a piece of furniture, let alone the repositioning of ALL of our furniture into a completely different house.  He didn’t have to see it though, because a friend of mine offered to babysit on the day the moving truck arrived.  And she took my kids (Cale included!) over to her house to do so.  God bless her.

You know?  Sometimes someone does something for you that you know you’ll never forget.  And maybe it shouldn’t seem like that big of a deal, but there are times, I have to admit, when the desperation for a healthy scoop of stress relief has the power to turn an ordinary babysitting gig into a VERY big deal.

The rest of our friends came over to move our stuff into our house.  And when my mom showed up, she took one look at the fireman’s carry and whispered to me, “I was going to buy pizza for your friends for helping you move, but I’m afraid there are just too many of them dear!”

I looked around and seriously began to tear up.  It was a good turn-out, especially considering how long we’d been gone for.  After the twenty-fourth box of books came through the door, however, people started to groan.  I began hearing things like, “We really need to buy you guys a Kindle.”  We do have a ridiculous number of books – a fact that becomes just as clear as a ringing bell every time we move.  And I found myself saying things that I thought our Arizona friends might appreciate, “Be happy that you weren’t on the loading end.”

There were long waves of not so silent gratitude for not having had to have loaded the truck.  And our friends in Arizona, the ones who did load the truck, spontaneously sprouted halos upon reaching a much deserved level of saint-hood in the minds of their Montana friends :)  Thank you all so much, by the way.

What’s eerie to me is that I had gotten rid of half of our stuff before we even moved.  We’re doing a lease with an option to buy on a little house that my mom owns here.  We’ll buy it in two years, hopefully, after our credit has healed from its first and only significant wound (the short sale of our house in Arizona).  We’ve gone from a 2600 square foot house to a 1300 square foot house (it’ll probably be around 1500 square feet by the time we get the basement finished out). 

We said that we were overwhelmed by our life in Arizona, that we wanted things to shrink back down to a more manageable size.  And, by God, they most certainly have.  It has felt good to pare down so much.  And I can’t even tell you how lovely it is to be living in a house that it takes me two hours, tops, to clean.

Shane’s commute now consists of a ten second walk down the stairs into the basement.  There’s no forty five minute to an hour and a half long drive each way.  No constant dumping of our money into the gas tank.  He can work in his pajamas, and he can monitor the amount of time I spend writing every day.  Hmmm.

The only downfall for Shane is his home office space.  I’m afraid that there are only two bedrooms on the main floor of this house.  One is for Shane and me, and the other is for Cale.  Alden and Isabel are sharing the one finished room in the basement, and Shane is currently framing out another one.  Until it’s finished, however, the only space available for Shane to use as a home office is the laundry room.

It’s kind of funny actually – all these high tech computer gadgets on a walnut desk, surrounded by concrete walls and pipes hanging down from the ceiling.  He has a spectacular view of the toilet drain pipe.  I really kind of think he should throw a bandana over his head, hang up some tie-dyed sheets and maybe a Bob Marley poster, and take a picture.  You know?  Send his boss a little postcard?  His MBA has taken him to a whole new place in life – specifically, to the spot next to the washer and dryer:)

Okay, so here are the things that I’ve been scared about.  Brace yourself.  It’s probably going to bore you straight to sleep.  First of all, I’ve started taking Cale to a healer that has helped Isabel immensely over the past few years.  What she’s done for Isabel is quite an incredible story actually, but it’s one that I’ll have to tell another day because this post is going to be too long as it is.

During our first appointment, she told me that Cale has lot of physical pain (muscle tightness and soreness mainly – because his little body is so darn rigid all the time).  She’ll be doing reflexology treatments on him once a week to relax and loosen his muscles.  She said that other than that, however, there’s really nothing that we can do for him at this time other than to pray.

Pray?  I guess that I was hoping for something more along the lines of an Autism cure.  Wow.  My expectations can be quite incredible, can’t they? 

She’s got her church praying for Cale.  They’ll be praying for him for twenty four hours per day, seven days per week, for one month (and possibly beyond).  And so far (during the first few days of all of this magnificent prayer) the only difference I’ve seen is that he’s stopped pooping.  And the only thing I’ve learned is that he’s in pain.  It’s probably too soon to know what will become of this actually.  I do tend to lose hope before even beginning to give something new a chance, for fear of the havoc it will wreak on my heart when, yet again, nothing changes.  

The other thing that’s had me all tied up inside is all of this “Medicaid” business.  I’ve discovered that things work a bit differently in Montana than they did in Arizona.  First and foremost, Arizona is an entitlement state.  What that means (in part) is that if you live in Arizona and are “disabled enough” (and you first have to be deemed eligible of course), you can get medical coverage (including any prescribed therapies) through ALTCS (Arizona Long Term Care – which is a state and federally funded “Medicaid” type of program).

They base it on the income of the individual him/herself, not on the income of the family – so a child is kind of a shoo in if he/she doesn’t have any money in their name.  And because there is no limit to the number of people who can have ALTCS, there are no waiting lists.  If you’re deemed “disabled enough” then you get the coverage and you get it fast (sixty to ninety days if I remember correctly).  Isabel and Cale both had ALTCS.

Since the medical insurance we have through Shane’s employer (American Express – self funded insurance) won’t cover any Autism therapies, ALTCS was the only thing funding all of the therapy for Isabel and Cale.  However, ALTCS doesn’t transfer to other states.  So we lost coverage for both Isabel and Cale simply by moving.

Isabel and Cale were getting somewhere around $2000. per month worth of therapy (EACH) if we had been paying for it out of pocket.  Cale was getting more than that come to think of it.  And this doesn’t include habilitation or respite.  And unfortunately, even after the serious condensation of our lives, we still don’t come anywhere near being able to afford this.  So we’re applying for a CWS waiver here in Montana.

The way to apply for ALTCS in Arizona, by the way, is to simply call DDD (Division of Developmental Disabilities) and ask to.  DDD comes to your house (or you can go to their office, either way) and determines whether or not you eligible for DDD services.  Once deemed eligible for DDD, you can then apply for ALTCS (who will take you through a much more grueling eligibility determination process than DDD did).

Isabel went through the ALTCS process three times before they finally determined her eligible (or determined that her mama was going to be an incessant pain in their asses until they finally gave up and gave it to her – I’m not sure which).  Cale, however, qualified within two minutes of seeing the ALTCS lady.  He had everything that he needed set up and funded entirely within the month.  However, like I said, you only get to keep ALTCS for as long as you live in Arizona.  And, in order to be able to apply in any other state, you first have to close out entirely in Arizona.

Well, come to find out, Montana is not an entitlement state.  What that means is that there are only so many Medicaid (CWS waiver) slots available to begin with.  So, no matter how “disabled” you are or how detrimental going without help might be for you, you have to wait for an opening.  Not surprisingly, there are fairly long and inherently unpredictable waiting lists.  In fact, I was actually told during our first week here, “You’re timing is good actually.  Someone has just passed away.  I know, sad huh?  But it means that there’s a slot open!”

To which I replied, “Gee I… I… I guess that I just didn’t realize that we would be waiting for people to die.”

I’ve been told that we could be waiting for Medicaid (the CWS waiver) for our kids here in Montana for anywhere between three days and five years.

In the process of applying for the CWS waiver here in Montana, I had a conversation with a man who has almost thirty years of experience working with Autistic children and their families.  I told him about our insurance situation (the fact that it doesn’t cover autism therapies) and about the Medicaid situation.  I talked to him about how worried I am that my kids might be waiting five years for therapy, that I’m not as worried about it for my daughter because, even though she struggles with social skills, she’ll still turn out to be pretty functional in the world, but that I am terribly worried about it for Cale.  I told him that I foresee Cale, without therapy, turning into a wild animal.  Actually, Cale already kind of resembles a wild animal, but it’s not that big of a deal right now because he’s still so little.  It will turn into a bigger and bigger deal, however, as he gets bigger and bigger.

This guy told me that this actually isn’t an unrealistic concern.  He told me about some of his experiences with some of the children with Autism that he has worked with over the years (without giving away any identities of course).  One in particular became full grown, was locked in his bedroom all the time, naked, throwing food and poop around, etc.  And he actually used the phrase, “resembled a feral child.”

Have you ever seen footage of a feral child?  A documentary perhaps?

I asked him if the child’s parents were still in the picture.  And I think he assumed that I assumed that it was their lack of participation (or lack of something) that allowed their child’s behavior to get so bad.  But that wasn’t what I meant at all.  What I meant was that it’s an outright miracle that these parents had never dropped this child off at a police station somewhere and said, “Good luck!”

He told me that this child had wonderful, loving, and fully present parents, who had always adamantly tried to get their child everything he needed, but that it required an intense level of behavior therapy to bring the child around to semi-functional.  Well, behavior therapy isn’t all that easy to come by once a child gets past a certain age (until the state finds them full grown and locked in their bedroom, naked and throwing poop, in the homes of loving parents anyway).  I couldn’t even get Cale behavior therapy in Arizona.  I could get him everything else, but not that.  This guy told me that there are cases in which all the love in the world isn’t enough, and that’s it’s really that important to get children with Autism the therapies they need.

If you’re interested in behavior therapy, by the way, then I’ll tell you my dirty little secret.  A friend of mine from Texas, who trains dogs for shows for a living, gave me a book called “Don’t Shoot the Dog.”  

Don’t laugh.  Well, you can actually.  It is rather funny.  I realize that it’s a dog training book, and a fairly old one at that.  But if you think about it, this book is all about learning how to communicate with non-verbal creatures.  And it puts the principals of behavior theory (using positive reinforcement instead of negative reinforcement and/or punishment) into simple, every-day language, which has helped me more than just about anything else in figuring out how to work with Cale. 

I think this book could be quite the valuable little tool for anyone who works with non-verbal Autistic children, and heck, verbal ones as well.  I’ve even applied some of these principals in teaching Alden, Isabel, and my husband Shane new behaviors!  I just wouldn’t go around telling people that you’re using a dog training book to learn how to teach their kids :)

Where was I?  Oh yeah, the application process is different here in Montana too.  First of all, there’s a middle man.  You can’t go directly to the state (DDD) yourself here.  You have to have an agency do it for you.  There are multiple agencies to chose from that are all very good (and I’m a terrible decision maker when given options like this), but you do have to pick one.  You can use more than one agency for a variety of other things, but you can only apply for Medicaid (the CWS waiver) through one agency.

Once you’ve chosen an agency to go through, then you must apply for the ability to apply for Medicaid (the CWS waiver).  I guess this part isn’t entirely unlike first applying for DDD, and then applying for ALTCS.  Once deemed eligible to apply for the CWS waiver, you can then apply for the CWS waiver.

Well, I got confused.  And in my haste to get things rolling, coupled with my indecision about which agency to pick (I didn’t want to piss anyone off), I inadvertently applied to apply for the CSW waiver through two different agencies.  Well, you can’t do that.  The Quality Assurance Division got involved immediately. 

I guess that a fairly irritate person from the Quality Assurance Division called up one of the agencies that I had applied to apply through, and said, “Do you realize that this family is duplicating paperwork for the state?  Well, they’re not allowed to do that.”

Luckily, the person that they happened to get a hold just happened to be the same guy that I had had the “feral child” conversation with.  And he asked the person this, “Do you realize that this family has private medical insurance that is self-funded and doesn’t cover ANY Autism therapies?  Do you realize that this family is facing getting no therapy for their children what so ever until this CSW waiver comes though?”   

“Goodness no,” the person replied, “I didn’t know that.”

“Well, that’s something you should know.  The other thing you should know is that this family is the kind of family that one only dreams about working with (He actually said that!  Can you believe that?  I guess it pays to have your paperwork in order.  Other than that he obviously doesn’t know us very well :)  They’re new to the politics around here and, frankly, applying for these things shouldn’t be so much like trying to figure out a Rubics Cube.  I assure you that it isn’t the intention of this family to anger anybody.  They’re just trying to expedite the process of getting help for their children.”

Agency selected, I must say.  This guy was able to smooth things over with the Quality Assurance Division within a day’s time, get our kids determined eligible to apply for the CWS waiver within another day’s time, and, as of yesterday, we’ve officially gotten all the paperwork done and turned in to their office for applying for the CSW waivers for Isabel and Cale.  Whew!  Thank God all of that is over with.  Now we wait – for somewhere between three days and five years.

I guess that I’m not entirely sure what I thought – that we’d get to Montana and that somehow the magic solution to all of Cale’s problems would instantly and magically drop right out of the sky.  And I think it might be the combination of the words “in pain” and “feral child” and “it could take five years for the CSW waivers to come through” that has brought me back to reality.

I’m just so happy to be back here with my friends and family again.  I mean, for the first time ever my kids are all in schools where people that I know and trust are taking care of them.  But I suppose that we’ll go back to Arizona if we have to.  One of our friends from there actually called Shane the week after we moved and said, “We’ll move all the books again.  Okay?  We just want you to come back.”

And that’s the thing that I keep coming back to – the fact that we have people who love us no matter where we end up.  And this hasn’t come about by being “too busy” to have them in our lives.  It’s come about by the exact opposite.

I’ll tell you what I think of when I imagine somebody trying to walk through Autism alone.  I think of that poor mother who let her Autistic son drown in their pool in Phoenix two years ago.  When I heard about that at Autism parent support group, everyone was standing in judgment, “Can you believe that?!  Isn’t that the most horrible thing you’ve ever, EVER heard?!”

And I found myself saying, “You don’t get what that is?  Really?  That’s the extreme, desperate solution of a parent trying to do Autism without support.  That’s what that is.”

I probably could’ve tried to sugar coat it a bit more than that.  I do tend to have a rather big mouth.  But I’m not kidding when I say that people can, and sometimes do, die when they’re up against something as powerful as this all by themselves.  Shane and I can’t afford to do it alone.  That’s why we’re never too busy to let people into our hearts and our lives.  Love may not be enough for some children with Autism, but there are times, like right now, when love (and prayers from a church full of strangers) has to be enough for us.  And one doesn’t get this love by being too busy for others.  Did I say that again?

Thanks again for being in our lives, and don’t any of you ever hesitate to call me any time.  I’m never too busy.  You can always facebook message me and I’ll give you my number.

So there you are dad.  There’s the scoop :)  Love you.

   

In The Wheelbarrow

I’ve wanted to move back to Montana for some time now.  There isn’t a particular reason why, other than the fact that I belong there.  I really can’t explain to you why I belong there.  I just do.  And I always have.

This doesn’t mean that I don't adore Arizona.  We’ve lived in Arizona for five years now, and even though it’s never really become “the place where I belong,” it’s still a place that I've grown to love beyond any kind of reason.  I must confess, however, that I haven't always loved Arizona.  I used to think that this had something to do with the state itself, but I’ve come to realize that it had more to do with finding out about and coming to terms with the Autism in our family instead.

I’m afraid that this tainted Arizona for me for awhile.  I can only compare it to experiencing the stomach flu right after eating a hamburger – that even though the hamburger had nothing what-so-ever to do with the flu, a hamburger may not sound very appealing again for awhile.  And I realize that this may not make sense anywhere but in my own mind:) 

I had a friend tell me once, a long time ago, that I would never be able to move back to Montana until I first truly fell in love with Arizona.  She said that only after it would be a tragic loss to leave here, would I then be able to go home.  And I thought that this sounded crazy.  But, as it turns out, she was right.  I'm so sad to be leaving here that I can hardly stand it, yet so incredibly happy at the same time.  It's very odd.

I sometimes wonder if God knew all along that I would need to keep my home town in Montana untainted in my mind – that I would need to have a place to dream about, to romanticize a bit, and to keep special, so that I would always know that there’s somewhere I belong.  This has been extremely important through the discovery of just how different, just how sharp-edged, and just how square pegged of a family I have in this smooth, round holed world. 

I haven’t dealt with the discovery of the Autism well.  I’ve pained and pined and oozed grief.  That’s a rather nice way of putting it actually.  I don’t just ooze grief.  My grief more closely resembles a tornado than a jelly donut.  I’ve done some damage to people around me here, who, for some reason, have kept on loving me anyway.  And it’s almost as if God knew all along that if I had been in my home town, with my family, through this time in our lives, that I might've damaged every lifelong relationship I had ever created there.  Then I truly would’ve been left with nowhere that I belong.
 

So God put me in the middle of the Arizona desert instead, a true environmental representation of my own spirit at the time, to carry out my little tantrum in a place where tornadoes quickly wear themselves down into harmless little dust devils, and eventually dissipate entirely under the heat of the desert sun.  I’ve experienced so much growth and so much healing here, and I’m forever in debt to some of the people in this beautiful state.  But I'd like to go home now.

Shane and the kids want to go too.  We have no family here in Arizona for six months out of twelve every year.  And, during the time our family isn't here (May through October) it’s too hot for the kids to play outside.  This is particularly painful during summer vacation.  It’s never made any sense to me why they’d have a three month long vacation from school in the middle of summer here, during which it’s hot enough outside to fry an egg on the pavement.  Most people spend time at the pools I think.  But since my youngest son Cale’s behavior more closely resembles that of a wild animal than that of a young child, I can’t safely take all of my children into public by myself.   And Shane works all day every day.

We don’t go to the pool.  We don’t go to the library.  We don’t go to the grocery store.  We don’t go to birthday parties.  We don’t go to the movies.  We don’t go anywhere at all.  Instead, we all sit in the house all summer long and drive each other absolutely crazy.  And by the time my in-laws get back down here (just before Halloween generally), my children are pretty desperate for love, attention, and entertainment, because they’re mother has been paying attention to nobody but the wild animal for six straight months.  Then, during the winter while my in-laws are here, we all really enjoy being here.  But come May, we have to repeat the process.

We went to Montana for six weeks last summer.  And instead of spending ten lone hours per day inside of the house on their DSI’s, Alden and Isabel played outside with the neighbor kids.  And they went to the pool, to the library, to the grocery store, to birthday parties, and to the movies, with various family members and friends.  I was still stuck at home with Cale for the most part, but Alden and Isabel weren’t.  And, if we lived in Montana year round, the kids would be in school during the winter time, where they really should be while the weather outside is crappy.

Last summer (and especially after the kids cried all the back to Arizona), we began to seriously consider moving back home.  Things didn’t fall into place though, which was disappointing.  But we quickly recovered and grew happy with idea of staying here again.  Then, about three weeks ago, things suddenly fell into place.

I just saw a little sign on someone’s face book wall that said:  God either says “yes” and gives you something good, or he says “no” and gives you something better, or he says “wait” and gives you the best.  I guess that we just had to wait awhile.

You’d think, by this point, that I would trust that going home is what’s best for us, wouldn’t you?  And I do think it’s what’s best for Shane and me and Alden and Isabel.  But I’ve just been informed that in order to apply for state services for Cale there in Montana, I have to completely close out our DDD account here in Arizona.  I was originally told by my DDD caseworker that Arizona would cover Cale (his medication anyway, which is $700. per month if paid for out of pocket) until he receives Medicaid there in Montana.  But now she’s retracted that statement, and has told me that we’ll have to close out here entirely and then reapply there in Montana.  The problem with this is that there are waiting lists in Montana.  And long ones.

We’re willing to wait for therapies for Cale, but this medication is what keeps him from stimming all day every day.  It’s what makes him want to interact with me rather than spend all of his time away from me in his own little world.  Our insurance company doesn’t cover anything for Autism though, so, like I said, we’ll have to pay the $700. per month out of pocket for Cale’s medication while he’s on the waiting lists in Montana.  And I’m really not sure how we’re going to do that.

Do you remember that old movie Sophie’s Choice?  Where she had to choose which one of her children would live and which one would die?  At the risk of sounding ridiculously dramatic here, that’s kind of what I’ve been feeling like.  I can’t yet see the other side of the “applying for Medicaid in Montana” mountain.  I really don’t know what moving back is going to mean for Cale.  All I can see right now is that in order for the rest of my family to be happy, Cale has to lose everything he’s got here in Arizona.

Cale has become consistently violent (well… as violent as a five year old can get anyway).  It doesn’t hurt me that much when he hits me in the face (unless he happens to get my eye, which he does here and there and that hurts like hell).  However, when he hits and/or pushes my other two children, or other people’s children, it’s a different situation.

Cale is still non-verbal and is incredibly reinforced by negative attention.  To say, “NO, NO, NO CALE!!!  WE DON’T HIT OR PUSH PEOPLE!!!” is the same, if not better, than giving him a sucker for hitting or pushing someone.  No really.  Because he doesn’t comprehend much verbal or non-verbal language, and possibly because he doesn't experience the sensation of pain correctly, he doesn’t seem able to differentiate between an extreme positive emotional reaction and an extreme negative one.  Any extreme emotional reaction is a sucker to him.

At first I thought, “No big deal.  Some kid at school will eventually kick his little butt for hitting or pushing, and then he’ll knock it off.”  Well, he did push a kid at school, and that kid broke his nose for it (okay, fractured his nose – I’m so dramatic).  His violence didn’t stop.  In fact, it doubled.  And the next week, when he pushed a kid at school and got his lip split open for it, it tripled.

The solution, of course, is to intervene before Cale hits/pushes somebody, but the problem is that you can't always see it coming.  He isn't at all angry when he goes after another kid.  Instead he smiles and giggles and bounces around, like he's going to try to play with them.  Then, out of nowhere, he hits them in the face, or pushes them onto their butt.

The appropriate “behavioral approach” response to this, just in case you’re wondering, is to intervene before the other child retaliates, and to turn your back on Cale while giving the other child the extreme emotional reaction instead (OH MY GOD!!!  YOU POOR CHILD, YOU GOT HIT/PUSHED!!!  ARE YOU OKAY?!!!  OH MY GOODNESS!!!  ARE YOU ALRIGHT?!!!).  If necessary, remove the other child while still completely ignoring Cale.  It works (theoretically) when the function of the violent behavior is to get a reaction.  They just haven’t quite figured out how to implement this solution at his school yet (picture me rolling my eyes).

This is the solution I’ve been using with Cale around my other two children, and it's worked with them.  But we still can’t risk allowing Cale around children who aren’t ours because, quite literally, the first thing he does is try to hurt them.  He even hit my friend’s baby with Down Syndrome at my house the other day (I didn’t see it coming – I really didn’t think he’d try to hurt a little baby), right after knocking down her three year old.  At a time like this, teaching Cale a lesson becomes a secondary concern.  Keeping everyone safe becomes the primary one.  We locked him in his bedroom until my friend took her kids and went home.

This is how Cale is ON his medication – without the medication his behavior is much faster and much worse.  But what if we can’t afford $700. per month for a medication?  What if moving back to Montana isn’t what’s best for Cale?  What if he took out an eye?  Or pushed someone down the stairs? 

Worse yet, what if his brain NEVER catches up with his physical abilities?  What if the aggression keeps getting worse and worse and worse, and he keeps getting bigger and bigger and bigger? What if there comes a day when my son gets so big that I can no longer physically control him, yet the state and/or the insurance company still won't help me? What if, in the future, he really hurts somebody?  Would he be taken from me?  Would my other children be taken from me?  Would I go to jail?  I do sometimes have to wonder what would happen if I called up the state and said that I refuse to be responsible for my son's behavior for as long as they refuse to help me. 

Wow.  Do you see what I mean about my being a tornado?  

These are the kinds of questions that torture me when I’m sitting in a puddle of my own self-centered fear.  The “what if’s?!!” are always my clearest little indicators that I’m in that puddle.  I have a lot of self-centered fear sometimes, but the gorgeous thing is that I have a choice today as to how long I want to sit there for.  I don’t like being in that puddle.  It’s water makes my skin want to escape from off my body.

Of course, I always hear what I need to hear at the moment I need to hear it.  Last weekend, I talked to a man who talked about the difference between having faith in God and trusting God.  He used the analogy of God being a circus performer, and said something along the lines of this, “When I see a circus performer walking across a tight rope pushing a wheelbarrow, high up in the air, I believe that the circus performer has probably done this hundreds of times before, and I know that he knows what he’s doing.  I have faith that he’s going to make it across.  However, if I truly trusted the circus performer, I’d sit in the wheelbarrow.  That is conscious contact.  It’s more than faith.”

He was talking to me.  He was talking to me about going home.  And he was talking to me about everything else that may or may not ever happen in this silly little life of mine.  Unfortunately, and fortunately, I have the kind of life that requires conscious contact.

The thing that’s kind of funny is that here I sit, actually thinking that we could be making the wrong choice even after everything has fallen into place.  Here I sit, actually thinking that there could be a wrong choice.  And here I am, trying to foresee what moving might mean for Cale when, in reality, it's none of my business.  I mean, who do I think I am anyway?  Some kind of fortune teller?  Or God himself?  Do I really think that I control the outcome of everything?  I don't know what's going to happen, and I don't have to.  I'm not the one in control of the wheelbarrow.  All I have to do is make my decisions based on trusting God, not based on self-centered fear.  All I have to do is sit in it.  

If I really believe that God wants me to be happy, joyous, and free, then what that means it is that whatever happens next (no matter what it may look like to me at the time, and even though it may be painful on occasion - maybe there's a bigger picture that I just can't see yet, or maybe there's something that needs to be learned from it, I don't know) is what is best.  It's not just what's supposed to be happening, it’s actually what is best.  If Cale wasn't supposed to be moving to Montana, then things simply wouldn't have worked out for us to do so.  

Belonging somewhere is a choice I think, by the way, not some sort of gut feeling.  And if everything works out we should be home before Christmas (unless, of course, God has other plans:).  And I have a feeling that my romantic idea of the little white, Montana Christmas is actually going to look more along the lines of, “HOLY FUCK it’s FREEZING here!!  Do you remember it being this COLD here?!  ME NEITHER!!!”

We’ll see how spiritual I am then.  Who knows.  Maybe I'll belong in Arizona soon:)   Happy Thanksgiving by the way.  Travel safely.