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.