Reflections (part 1 of 3)

“In the golden city of the heart dwells The Lord of Love, without parts, without stain.”

The Upanishads

I remember the first time it rained in our basement.  It was spring time.  I had been upstairs in my “office,” which is really a small breakfast nook behind our kitchen, happily tapping away on my computer keyboard into some blog post, when it suddenly occurred to me that the clothes in the washing machine needed to be put into the dryer.  And I had come downstairs to take care of this task to find it raining in the laundry room.

Now, our “laundry room” is really an unfinished part of our basement, complete with grey, cinder block walls (the actual foundation of the house), crumbling concrete floors, and a spectacular view of pipes, wires, furnace ducts, and toilet drain.  And the only thing that bothers me about this “laundry room” is that it also doubles as Shane’s home office, which he works out of, for his actual job, all day long, Mondays through Fridays.

I’ve tried to talk Shane, repeatedly, into moving his office upstairs into my breakfast nook instead, because he would at least have some light, and because I can put my little desk any old place and be just fine.  But he has consistently declined my pleading for one reason and one reason only.  Our kids are loud, especially when they’re all at home during summer vacation (Cale’s screaming, in particular, could be extremely detrimental to Shane’s business calls), and my breakfast nook doesn’t even have a wall between it and the kitchen, much less a door.

I’ve also brought up the idea of Shane using one of the kids’ bedrooms for an office.  However, since two of our children already share a bedroom (and putting all three of them into one bedroom would probably result in someone being seriously injured), this idea was quickly ruled out.  And he can’t work out of the middle of the living room because, again, it would be too noisy.  And our own bedroom is barely big enough to walk around our bed in.  His big desk doesn’t even come close to being able to fit anywhere in there.  In short, the breakfast nook and the “laundry room” are the only options, so Shane just stays in the “laundry room,” day after day, week after week, month after month after month. 

At first I couldn’t figure out what was going on.  I mean, it wasn’t an ordinary leak.  With an ordinary leak, you can see which pipe or drain the water is coming from.  But the water seemed to be coming from the entire ceiling, and it was pouring down in sheets onto everything in the room.

I looked at Shane, who was staring at me wide eyed.  He was on a business call, speaking Greek as usual, “Well, the M4230 needs to have SCR in order to be EMV compliant, and I checked with ESI Links, and we need to have GCAG and GFSG certification for the M4230 in order to take full advantage of its IP connectivity capability.”

People ask me what my husband does for a living, and I say, “He works for American Express.”

The next question is always inevitably, “Oh yeah?  What does he do for American Express?”

“I have no idea,” I reply, “But if you ever figure it out, could you let me know?”

I actually looked, for a moment, out the small basement window above the washing machine.  I expected to see it raining outside, and was trying to figure out how the entire roof could be leaking that badly (a blond moment – I was in a basement for crying out loud).  And that’s when I realized that the water had to be coming from the bathroom, which is directly above the “laundry room.”  I put two and two together and finally realized that Cale was flooding the bathroom.

I grabbed an arm load of towels and ran upstairs to the bathroom.  And, sure enough, the entire bathroom floor was covered in at least half an inch of water.  I looked at my son.  He was sitting in the bathtub with a giant shampoo bottle (which he had apparently emptied the shampoo out of somewhere).  He had clearly been using it to pour water onto the floor with, and he had just finished filling it with water again as I came into the room, so he looked up at me and smiled his gorgeous little smile while he emptied the entire bottle right onto the floor.

Cale has been obsessed with water this summer.  I mean, he’s always been obsessed with water, but he didn’t used to flood the bathroom.  Then, he only occasionally flooded the bathroom.  And now, he floods the bathroom every time he has a bath. 

The solution seems relatively simple, don’t you think?  Stop giving him baths.  The only problem with this idea is that all he wants to do is take baths.  He pulls me to the bathroom repeatedly (and he won’t stop) until I turn on the tub faucet.  And the only time, all summer long, that Cale has NOT been destroying the house, hurting himself, or hurting other people, has been when he’s been in the bathtub. 

He’s flooded the bathroom so many times now that the floorboards underneath of it will no longer dry out.  I’m actually afraid of them rotting to the point of the entire bathroom landing with a crash on top of Shane.  Therefore, I’ve been insisting the Cale play in water outside a lot these days.  He has a wading pool in the back yard, and a garden hose of his very own.  But the only problem with Cale playing in water outside is that he can’t be left outside un-supervised, even though I have two other children and dishes and laundry (and I’ve been wondering if I shouldn’t just kiss my writing “good-bye” entirely).

The last time Cale was left outside alone for a few minutes, he shattered the bowl of water that Alden had left outside for the dog.  It hadn’t occurred to us that Alden would use a giant glass bowl to give the dog water in, and we hadn’t noticed it.  So when I came outside to check on Cale, I found him sitting in the middle of a bunch of broken glass, naked, bleeding, and pulling shards of glass out of his own feet.

This happened just four days after Cale hurt his leg.  And the leg thing was so strange.  I had put Cale to bed at his usual bed time when, about an hour later, I heard him screaming, so I went in his room to check on him.  He was lying on the floor in the middle of the bedroom (which is nothing unusual actually), and I realized that he had a temperature.  I cuddled him for awhile, but I eventually went to bed myself because he’d stopped crying, and because I figured that he just had a flu bug or something. 

It took us another day and a half to figure out that Cale had hurt his leg.  Shane, who had had the same flu bug the week before, told me that his whole body hurt when he had that particular bug.  Alden and Isabel, who had both had it recently as well, told me the same thing.  So it didn’t surprise me that Cale cried anytime we tried to move him (to change his diaper or sit him up so that he could drink water).  And it wasn’t until his fever broke and we knew that he really should be feeling better, yet he still cried anytime we tried to move him, that something else was wrong. 

It was the doctor who confirmed which leg Cale was favoring (all I knew for sure was that Cale wouldn’t stand up, but I suspected that something was wrong with his right leg in particular because he seemed to cry extra loudly when I lifted it during diaper changes).   

The doctor x-rayed the leg from his hip to his ankle, but nothing was broken.  So he told me that it must just be a sprain or something, and to alternate Tylenol and Motrin.  I told the doctor that I wanted to know exactly what was sprained, but the doctor told me that since Cale is still non-verbal, there was really no way to know.

The only thing I can figure is that Cale, after I’d put him to bed that night, must’ve climbed up on top of Alden’s dresser and then either jumped or fell off of it.  You see, he had never done this before.  In fact, Alden keeps his toys on the shelf above his dresser so that Cale can’t get into them.  And some of these toys were on the floor when I went in to check on Cale that night, but I had just figured that Alden had gotten them down earlier.  It might’ve been Cale though.  It’s the only time that I can think of that he could’ve hurt his leg without me noticing. 

I can’t think at all about the fact that Cale spent that entire night alone with a fresh sprain and no painkillers, and that he had the flu on top of it for the next two days in a row, during which his mama picked him and moved him around and pushed his legs up to change his diaper, etc., all without knowing that his leg was hurt, because the very thought of it causes me instantaneous vomiting.  And just two days after the doctor’s visit, during which Cale was still limping heavily on that leg, we dug the shards of glass from the water bowl out of his feet.  And the leg thing had happened just two weeks after Cale had gotten out of the hospital.  It’s been one thing after another, it seems, all summer. 

Needless to say, Shane and I have become so exhausted from being on “red alert” every moment of every day (particularly since we still don’t have any respite care), that sometimes we actually just let Cale flood the bathroom.  We literally put him in the bath tub with a big cup (so that he doesn’t pour out the shampoo), turn on the water, and leave the room, because it’s the only time that he’s safe and occupied enough to not cause any real trouble.  And I just keep praying that the bathroom doesn’t fall on Shane.

My mother-in-law’s nephew, the one who has Autism and is still non-verbal even though he’s nineteen years old now, has just lost his mother.  She passed away a few weeks ago.

I asked my mother-in-law if this nephew had gone to his mom’s funeral, and my stomach sunk when she replied, “Oh, no.  He doesn’t know that she’s passed away, nor would he understand it if we told him.”

This makes sense I suppose.  Even if they did tell him, he wouldn’t understand the words coming out of their mouths, much less the concept of death.  So this sweet boy’s mom is just gone now.  And she’s going to be gone forever.  And he can’t even have an explanation.

My mother in law and I talked, for awhile, about the group home that this boy lives in.  And my mother-in-law finally said to me, “You do know that you guys will be facing this with Cale soon, don’t you?”

I just looked at her.  She seems to be bringing this up a lot these days.

“By the time my nephew was nine years old,” she continued, “he couldn’t be left alone with his mother at all without him injuring her.  That was when they gave up custody of him to the state so that the state could put him into a group home.  And, even though it was a very difficult thing for them to do at the time, it was the best decision that they could’ve made for him and for themselves.”

I touched the chip in my front tooth with my tongue, and recalled the day (which was about three weeks earlier) when Cale kicked me in the face as hard as he could with both feet as I was trying to get his seat belt on him in the car.  It hurt really bad, and I tried to imagine what Cale (who’s going to be six years old in a couple of weeks) would be like if he was the size of his nine year old brother.  I cringed.

It always bothers me when my mother-in-law talks this way, because, out of all of the people in our family with Autism, Cale is the only one that she ever compares with this nephew.  Of course, Cale’s also the only one, besides this nephew, who’s stayed non-verbal until the age of six, but it still bothers me.  And it took me a couple more weeks to realize that my mother-in-law, after everything that has happened over the summer, is probably done just talking about it. 

I think that my mother-law-in consulted her brother (the father of the nephew in the group home) at a family reunion we had a few weeks ago (during which I had to take Cale home because he was hitting the other children and banging his head onto ground), regarding how to go about getting Cale into a group home.  The reason I think this is because, right after the family reunion, Shane’s sister let us know that she was looking for group homes that could take Cale now.

Is Cale really that profoundly Autistic?  Or, maybe it’s not the Autism at all, but the “developmental disorder” that Cale has been diagnosed with in addition to the Autism.  You see, Autism presents a whole series of challenges in learning how to function in this world, but “Autism” alone doesn’t mean that the child will never learn how to function.  Many children with Autism learn how to function in spite of the challenges.  So, why doesn’t Cale seem to be able to?

The word “disorder” instead of “delay” implies that Cale’s problem is a fixed and permanent thing.  The only problem with this diagnosis, in my mind anyway, is that it followed a ten minute long evaluation, during which the doctor didn’t run any tests, but only stared at Cale before assigning him the forever condemning “developmental disorder” in addition to the Autism.  I do plan on getting him a proper diagnosis some day, once (or if ever) he’s able to actually participate in the required testing.   

Is Cale’s problem, whatever it is, really that bad? – is the real question.  I wonder this often.  And the answer is that I don’t know, but I do know that if he never gets therapy, the way that this nephew never got therapy, then the answer will always be a big, fat, irrevocable YES. 

Our state caseworker came to our house to makes some changes to Isabel’s therapy plan.  And I told her about all of the things that have happened with Cale this summer - about how Cale was hospitalized (which I wrote about in previous blog posts), and about how he hurt his leg, and about how I found him sitting naked in broken glass, and about how he’s pulled all of the pictures off of my walls and shattered the glass in them, and about how he’s repeatedly hit me and kicked me in the face, and about how the only peace and quiet we’ve had all summer long has been while he’s flooding the bathroom.  She reminded me that she had come over to talk about Isabel.

I told her that Cale had roughly ten words that he could communicate with at the time that we moved here to Montana last December, because he had gotten multiple hours of therapy every week (thanks to the state of Arizona) for nearly two years.  He had gotten to the point of being able to attempt an imitation of any word actually, but there were only about ten of them that he actually knew the meaning of.  He was also playing with toys, following a basic routine, and wearing clothes.  And he was toilet trained too (well, he would pee in the toilet, but we hadn’t figured out how to get him to poop in the toilet yet).

I figured that once all of his therapy stopped, that Cale’s progress would stop as well, but only until we could get services set up for him here in Montana.  I reminded the caseworker that we applied for a Medicaid waiver for Cale the moment we got here, but that we’ve been on the damn waiting list for nearly eight months now and there’s still no sign of him being selected. 

I also reminded her that our medical insurance doesn’t contribute one single penny to any Autism therapies (American Express self-funds its medical insurance, which means that they’re not technically a medical insurance company, which means that they’re exempt from the state laws that require medical insurance companies to cover Autism therapies), and that since the out of pocket cost of Cale’s therapies come in at around $4,000 per month, which we don’t come anywhere near being able to afford, we’re entirely dependent upon Cale receiving a Medicaid waiver in order for him to get the therapies that he needs.  She knew all of this already, of course.  She reminded me again that she had come over to talk about Isabel.

I explained to the caseworker that I knew Cale would cease to progress without therapy, but that I had never realized how much he would actually regress without therapy.  Not only is he no longer verbalizing at all (imitation or otherwise, all of the words are completely gone), but he’ll no longer play with toys, follow a basic routine, or wear clothes.

I told her about how I’ve tried to keep clothes on Cale this summer.  I put them on him, and he takes them right off.  So I put them back on him again, and he takes them right off.  So I put them back on him again, and he takes them right off.  So I try to hold the clothes on him, and he screams and hits me in the face, or, while I’m trying to wrestle pants onto him for the fifteenth times in ten minutes, he kicks me in the face as hard as he can with both feet.  So I go and check myself for more broken teeth while he takes his clothes off again.

And the toilet training?  Well, since he’s naked all the time now, he just pees right on the floor.  I cannot even begin to describe to you what the carpeting in his bedroom smells like.  I invited the caseworker downstairs to Cale’s bedroom for a sniff, but she reminded me again that she had come over to talk about Isabel.

“It’s like having a poorly trained dog.  No, it’s worse than that, actually, because dogs don’t pull the pictures off of your walls and shatter the glass in them.  It’s like having a monkey.  A BIG and very poorly trained monkey.  No, I’ll tell you what it’s like,” I said to her, “It’s like having a feral child, right in the middle of a loving family.  It’s the weirdest damn thing that you can imagine.  And now he seems to be injuring himself whenever nobody is looking, yet we do have two other children (one of whom has Autism also) who occasionally need tending to as well.  So how is it that the state can just sit back and completely ignore this?  I mean, I don’t want to sound like I think that we’re entitled to help or something, because I don’t think that.  But at what point do we, as parents, have a legal obligation to inform CPS of the things going on in our home?”

She stopped reminding me that she had come over to talk about Isabel.

“Our family is looking for group homes for Cale as we speak,” I continued, “And from what I understand, we would have to give up custody of Cale to the state in order to get him into a group home because it would be too expensive for us to pay for ourselves.  So if the state doesn’t kick it into gear soon, and if my family develops any say in the matter, then it’s quite possible that the state will soon be receiving custody of this mess.  And I know from all of Cale’s past experience with getting therapy that there’s absolutely NO NEED FOR HIM TO BE DETERIORATING LIKE THIS!”

I breathed.  And I calmed.  And I decided to stop talking to her as if this was her fault personally.

“I’d like the people up in Helena to know exactly, detail for detail, what they’re ignoring here,” I continued, “ And I’m going to start with daily informative phone calls.  Would it be better for you to harass them with these or should I?”

 She told me that we would both do it, God bless her.  She could see that I was in no fit state to discuss Isabel.