Our Common Welfare

I have watched something bright in my son fade further and further away over the past two years. It feels like a traffic light in my rear view mirror during a soft rainstorm at night. The windshield wipers are making their frantic sounds, anxiously chasing the rain off the windshield. And through the noise the light is growing smaller and streakier and fuzzier and blurrier, the further I drive away. I'm afraid with all of my skin of the moment when all that's left is the tiniest hint of red, unsure of whether it's still a light or just a reflection of something else on the slick black street. And all that will be left is the noise.

Yet somehow I think that if he could talk it would take me in the other direction, letting the light grow bigger and redder and closer and brighter until I'm right up underneath it, commanded to stop by it's glowing, undeniable presence.

I finally got a call back from SARRC this morning about getting Cale evaluated so he can begin Specialized Habilitation (HabM/HabB). The woman asked me a series of questions including, "Cale has a few single words that he uses? Correct?"

"Yes. He did anyways, after your Jumpstart program," I answered.

"Oh good!" she said.

"He's lost most of those words again now though," I continued.

Silence.

"Oh it's okay," I responded automatically to the silence, "it was the first real hope we'd had for him in a long time!" Ooops. Here I was trying to sound encouraged, but I think I just ended up sounding pathetic!

The Jumpstart program has ended for us. While we were in the program, Cale made some real progress for the first time. He was saying some words, the disruptive behaviors lessened, and we knew when he started to slip up that we'd be back again the following Tuesday or Thursday for another round. But the program was only five weeks long.

Now I feel a bit like a baby bird that's been kicked out of the nest. You know what it's like to find a "nest" for an autism parent? It means so much more than anyone can ever say. But once again, like so many other good things throughout my life, it's over. Just like that.

"Goodbye and good luck," all of us parents said to each other on the last day, a mixture of desperation and sadness leaking out of our eyes just above plastic smiles. What is that look? The one in the eyes of autism parents? I know I've got it because my own face seems to draw it out in the eyes of others.

Shane and I recommended, in the evaluation of the program, that they put together a parent contact sheet for Jumpstart alumni. But I can't help but wonder if something even more organized than that isn't necessary for autism parents. There are support groups, but the ones I've been to seem to be all about the kids and "finding the next thing that will help the kids!" Am I just selfish to ask, "But what helps the parents?"

Anyways, this program called Jumpstart that's offered by SARRC (Southwest Autism Research and Resource Center) is fantastic and I highly recommend it to any autism parents. It was a five week long program during which Cale got five hours per week of ABA based therapy and Shane and I got five hours per week of parent training (all for $100. per week). Ridiculously cheap and must be subsidized in some way. It was single-handedly the best $500. I have ever spent in my entire life. It gave me an fantastic over view of autism, and provided some real live tools for how to begin our journey.

The two and half hour long classes (Tuesday and Thursday mornings) were divided into two parts. During the first one and a half hours, the parents would drink Starbucks and look at power point presentations (worth $500. in and of itself) while professionals worked with our children using the ABA based techniques that us parents were in the classroom learning about. During the last hour, us parents would get to practice the techniques with our own children utilizing one on one professional guidance.

The class covered ABA therapies (PRT, DTT, and PECS) as well as other issues regarding autism (disruptive behaviors, potty training, feeding and sleeping issues, quality of life issues, accessing state services, and utilizing the special education system).

Cale is still saying "pretzel" and "cereal" through a whisper, but I generally have to listen to fifteen minutes of screaming and breaking stuff before he'll say them.

I finally put a high chair in my office (that he can't knock over or break out of) and every time he starts screaming and breaking stuff I put him in there and shut the door so the rest of us can have some peace. I'm not supposed to punish him, but the rest of us shouldn't have to listen to screaming and cut our feet on broken glass (the constant sweeping can't keep up with my Cale any more). I really don't mean for the time out chair to punish him, I just need for the rest of us to be able to function. The fact that it punishes him is just sort of a satisfying by-product.

It's important to remember that Cale losing his words again is not a reflection of the Jumpstart program. If anything it's evidence that Cale might need ongoing professional behavior therapy. As good as the parent training was, obviously, Shane and I can't do all of this behavior therapy by ourselves. And, contrary to popular opinion, that doesn't mean that we're inconsistent and bad parents. It means we have five people to take care of in our family, and Cale is but ONE of them.

I'm sure it DOES mean we aren't consistent enough for Cale. Seeing as how ABA therapies require the consistency of a woodpecker's pecking and any slight variation means Cale loses anything he's learned immediately, and we do have two other children to care for, it is probably is our fault. But that is okay too. We're doing the best we can.

For the first year and a half of Cale's life, he was completely normal in every way. He was meeting all of his developmental milestones, he smiled, laughed, babbled, learned a few words, and sought us out for food and hugs. I found a beautiful photograph of him the other day sitting in a bright blue wading pool, water trickling out of his hair, and pretending to play a baby flute.

In the picture he's looking directly into the camera and he's using the flute correctly! He's got the tip of the instrument up to his lips and his fingers on the little holes. It's almost like he knows what it's for!

Now when he finds that same flute he throws it as hard as he can to hear the sound it makes as it's hitting the ground. And he doesn't have a clue how to use ANYTHING correctly. No really. It isn't that he's bored with how things are supposed to be used. He doesn't know. That information has been lost piece by piece down some invisible vortex.

He does still smile a lot, sometimes seemingly at tiny little ghosts that no one can see but him. He'll just stare into the corner and start laughing like an invisible little person has initiated a game of peek-a-boo. And his eye contact. Well, it has become fleeting at best.

I've watched him LOSE milestones, actually go BACKWARDS developmentally. It's happened slowly, not suddenly, and it has been agonizing to not be sure of what to do about it. Finding out what to do with autism is still such a crap shoot.

There are literally dozens of different therapies and supposed "cures" out there (and I haven't even touched bio-medics yet!) but there is still little to no medical research and support on what autism is and how we should treat it.  I've had a terrible time getting MEDICAL guidance on how to proceed. Speech therapy works for some kids. Occupational therapy works for some kids. Vitamin B12 shots work MIRACLES on some kids and do NOTHING for others. The doctor's say, "Well, you might try this or that, but there is no research that supports that this or that will actually make any difference." So, it's a total crap shoot. Everyone has their opinions, but no one has medical research to back it up with.

Western medicine isn't even sure what autism is. They cannot do an MRI and see where the neurological system has been damaged or in some way compromised (*later insert - they did a series of MRIs on adults with Autism in England this year and could physically SEE the Autism in their brains).  They have ideas, but they don't know for sure. Yeah. I thought we lived in the twenty first century too! And this brings a particular kind of pain to autism parents.

Right now I'm reading The Autism Mom's Survival Guide by Susan Senator. Read it. It's fabulous. In it she talks about what she calls "the Great Autism-Therapy Chase."

She tells us her experience and the experiences of other autism parents with regards to guessing about different therapies. One of the experiences is a story about a mother who has twins. One of the twins has CP (Cerebral Palsy) and the other is autistic. She says that with CP the doctors know exactly what to do. They had a plan for the child's ongoing medical care that they implemented immediately. No one ever claimed the CP would go away, but at least the doctors and the mother knew they were doing all that could be done. The mother knew she'd done (and continues to do) her part (and she knows exactly what that is) to help her child.

With her autistic child, however, she never knows if she's done everything she can do. There are countless things to "try" and there is no limit to them. And one is a "bad parent" if they "leave a stone unturned" right?

With no medical guidance, and Jenny McCarthy saying there's a "window" of opportunity (at a very early age) in which to pull your child OUT of autism, people panic. I know I did. I remember specifically reading her book and thinking "My kids didn't get early intervention. I guess the window is closed."

It is published everywhere (although medical research refuses to back it or anything else up) that "early intervention between the ages of 0-6 years old is crucial if the child is ever to make any real progress." And the states move at the pace of a wounded turtle to get an autistic child appropriate care (and they can get away with this because, again, there is not enough MEDICAL research to back it up).

So a lot of people believe they have a shockingly short period of time in which to help their kids. I remember feeling like I had JUST found out about my childrens' autism, but it was already too late to help them!

There are also a lot of people who would do anything to help their child at any age (and I'm one of them). But again, with no guidance from the medical community, there are countless stories of people taking drastic actions such as walking away from their homes, emptying their bank accounts, using all of their savings, racking up huge amounts of debt, ruining their marriages, damaging their relationships with their "typical" children, moving to other cities, driving very long distances, putting their kids through iffy treatments, and doing all but selling their souls to the devil, to get their kids the "needed help."

And the saddest part to all of this is that, statistically, most people don't see significant changes in their children. Can you imagine seriously damaging your life only to see little to no difference? It's really not like one can just do "this, this, and this" and know they've done all they can do. No. It's a bottomless pit that we have to decide how far we want to sink in to, always keeping in mind that it may or may not make any difference.

I use every bit of spiritual wisdom I can these days to make all these challenging and horrific decisions. One bit of this wisdom came to me the other day as I was staring at my bum in the mirror and wondering if I'm still cute enough to be a stripper (I'm not by the way, and probably never was to begin with but I really want to get Cale into SARRC's school program. It, however, costs $2600. per month).

After accepting a difficult truth about my thirty five year old mom bottom, I was reminded of a conversation I once had with a friend of mine regarding twelve step recovery programs.

Now, people are generally familiar with the idea of the "twelve steps" which are geared toward individual recovery, but did you know there are also twelve traditions which are geared toward group functioning and the twelve step program as a whole? One of the purposes of these traditions is to provide a group with a framework in which to make sometimes difficult decisions.

Tradition one is what came to me and it goes something like this: "Our common welfare should come first, personal recovery depends upon unity." Our family is a group and we all deserve to be happy and healthy. And Cale's recovery certainly depends on our family unity. Therefore, Shane and I have decided that we will never give up and we will always continue to try new things for both Isabel and Cale as we can afford them. But we will not hurt ourselves in the process and we will not let our happiness depend on the end results of these therapies. I'm practicing my ability to hope with all my hope without expecting particular results.

In addition to the therapies the state recommends (speech, OT, and PT), we are also always trying something new with Cale. And any time something brings positive results (even for awhile) we keep trying to do it. In addition to everything that brings positive results, we are also always trying ONE new thing at a time (as we can afford it). For us this is a practical and prudent way to proceed.

I know I have to make a place in my heart for the possibility of not seeing red any more. It's a kind of long, drawn out grief. Because my child is gone. But he isn't. But he is.

I really want to hold on to who I always thought he'd be. But he isn't that person. I watch typical three year olds run around on the sidewalk because they know the street is dangerous. They jump and color and play with toys (correctly) and they look at people and talk. They talk, and it makes me want Cale to talk to me. But Cale may never talk to me. There are many, many, many non-verbal autistic people in the world.

What a place to be. I can't give up or I'm giving in to despair, but I can't expect him to be someone he's not either. I wonder if I'll have to let my dreams for him go completely before I can really embrace the sweet little boy who throws the flute at the floor.

Motivation

I've been thinking about motivation this past week. Motivation to surrender that is. That storm that happens just before the calm, the one that throws it all into the air leaving permanent change for the calm to settle down on.

It's a topic that's come up several times like a child in need of attention. When I have a topic like this occur and reoccur over a fairly short period of time, it generally means that I need to stop and give it my attention. I need to pour it a glass of fresh chocolate milk, curl up with it in the rocking chair, and listen to it's message for awhile.

It started last Thursday when I was in PRT therapy with Cale. They begin each session by videotaping me playing with him for ten minutes. The goal is to get him to interact with me as much as possible during that ten minutes and then, when appropriate, set up language opportunities within that interaction.

For example, if he starts pushing the button on a music box, I'm supposed to cover that button with my hand and say, "push?" If he says "push" then I say, "YEAH!!! You said push!!" and let him push the button and hear the music (reinforcement). After the videotaped ten minutes, they give me feedback on how I'm doing and spend the next hour working with me and teaching me more ways to motivate him to talk.

We've been at this for the past three and a half weeks now. During the first three weeks this therapy managed to turn EVERY SINGLE communication attempt we had with Cale into a knock down, drag out, eardrum shattering screaming, head slamming, face scratching, no fun what-so-ever, fight. For him anyways. He finally said, "pretzel" but then stopped talking again. Pretzels are only mildly motivating apparently.

We were supposed to do this all day every day with him no matter how miserable it made our family. We were supposed to make him ASK for everything that he wanted and all he had to say was, "uh" to get it.

We did it (a lot anyways), and all he did was scream and scream and scream. It really hurt my feelings that talking to me could be THAT aversive for him. "Why is interacting with your Mama such a horrible thing?" I would ask Cale during his fits of total rage. Pretty soon I could feel my own resentment towards him swelling like a hot dog in the microwave.

After awhile the tantrums stopped, but he still wouldn't interact. Instead he'd avoid us entirely. If we'd cover the button, he'd just walk away. We'd follow and try to interact with the next toy and he'd walk away from that one too. And round and round we'd go. "Toys smoys," I imagined him saying to himself, "If it means I have to talk to YOU then I don't want it!" It would've broken my heart entirely if there were any pieces left that were big enough to break.

After three weeks of intense discouragement with no results (other then "pretzel"), I began to seriously question this therapy. It was quickly reaching "not worth it" status.

Then, of course, came the breakthrough.

During the initial ten minutes last Thursday, I did the usual and followed his lead (I went to the toy he lead me to) and attempted to play with him. And as usual, he just moved on to the next. He'd rather lose the toy than have to interact with me while playing with it.

Let me say that again. He'd rather lose the toy than have to interact with ME while playing with it. Can you see how the MIS-perception that autistic people "can't love" came into being? That description is still in the DSM-4. Yeah. We really need to join the 21st century regarding autism.

Around in circles we went for the whole ten minutes of videotaping after which I explained to the therapist that this was what it had become at home as well. I also explained that I have two other children, schools to visit, I.E.P.s to pick apart, teachers to find, therapists to find, doctors to see, appointments to keep, a state to fight a bloody battle with, laundry, etc., etc., etc. And I summed it all up with, "and I have very little time to waste." I'm so glad they're used to us parents.

She put her camera away and studied Cale for awhile. Then she gave me some suggestions regarding arranging the environment a little differently. Putting the toys up on a shelf, for example, where he can see them but has to ask for me to get them down. She said I could do the same with cereal, or anything else he likes for that matter. "So let's try it," she suggested.

We put all the toys behind a cupboard door and then I sat down in front of the cupboard, blocking the door. "Now wait," she suggested, "until he acts like he wants to get in there. Then say, "open?""

So I waited. I looked down at Cale who was laying on the floor crying softly. He was tired that morning and had been trying to get me to just hold him ever since we'd gotten into the therapy room. "Dang it Cale," I had thought during the first ten minutes, "we're supposed to be engaged with the toys here! Don't you realize Mama's being taped?" If you have any sort of need to look good to others and you have autistic kids, you're in luck. Autism will always take care of that problem for you.

He didn't care at all that the toys were in the cupboard. He didn't want the toys. Toys smoys. And that's when it suddenly, and for just a moment, became clear like a flash of blue sky between the rain clouds. What he wanted was me. And it had never before occurred to me to use myself as reinforcement.

He got up, came over to me, and sat on my lap. I started talking to him softly, "Hi sweetie. You look so tired." I snuggled him up. He put his thumb in his mouth, took my hand, and put it up to his arm (this is what he does when he wants me to tickle his arms real softly). So I asked, "tickle?"

He got up, screamed, and hit me in the face as hard as he could with both fists. My kids are so fast! They go from sweet baby to little demon in half a second flat. As a result, I have swollen or black eyes and scratches on my face all the time. I think there are people who sometimes wonder about my husband:)

"Ah haa!" I thought.

He kept screaming and hitting me in the face so I stood up and turned away. His cry changed from anger to anguish as he got in front of me sobbing, batting at my legs, and holding up his arms.

Now I've become a calloused, worn out, and crabby old mama but there is something about a crying child looking at me with his arms up that could move boulders inside of me. I prayed, "God please help," under my breath and it actually took an act of God to keep my arms at my sides.

Then I did something I wasn't sure wasn't the straw on the camel's back, the tip of the iceberg, the hole in the doughnut, oh hell...it just felt downright cruel. I looked down at him, almost shaking, and said, "up?"

He threw himself on the floor slamming his head into it repeatedly. "Sorry Cale," I thought, "that button's been disconnected by your sister." I knelt down and kept him from hurting his head without looking at him, which I've become a complete expert at. He kicked me in the face with both feet so I turned my face away, still keeping him from hitting his head. He kicked me in the chest and the neck a few times before I got him up against the wall in a position where he couldn't really move his head. Then I held him there and used my other hand to push his legs down.

He screamed and screamed and screamed during which the therapist said things like, "Good job," and "Great job," and "This is really good actually." My ears gobbled up and savored her praise because when I do this alone at home, I just feel like a terrible mother.

The tears tried hard to well up in my eyes, almost like someone was poking little holes in my eyeballs with a tiny needle. But nothing came out. I'm afraid I've done this so many times with Isabel that it's barely upsetting anymore. And now I have to do it with Cale. The tears couldn't come as I held my son down, and I started to wonder if the Arizona sun is turning my heart into leather.

Then the therapist said something I could hear with both ears and all of my experience, "I know it's hard," she said, "but the fact that he's so upset tells me that he's motivated. Now we just need to let him go through this painful process until he becomes willing to do it differently (ask for my affection in an appropriate way). And we'll just sit here and wait for him until he's done."

"Huh," I thought to myself, "I believe I've heard this somewhere before!" And that slid everything about Cale right into perspective for me. "Just wait until he's done." I don't have to feel bad. At all. And my chest lightened like someone pulled a truck off the top of me.

After Cale finally quieted completely, I held out my arms and said, "hug?" And he whispered, "hu." I picked him up and hugged him tight saying, "You said HUG, good job!!"

Cale started by asking for my affection for the rest of the day. He said, "tickle and hug" for the rest of the day! Since then this has expanded and he has said, "Isabel, Mama, let's go, go bye-bye, eat, candy, drum, blow, open, cereal, and drink" and a whole bunch of other things I can't recognize. He sounds like he's deaf when he talks but then again he hasn't had any speech therapy yet. And hell, if he'll just say, "eat" instead of wandering around screaming (leaving me wondering what in the heck he wants), it'll be a lot easier on my ear drums.

You know? I think I had to get motivated to surrender too. I had to surrender and accept that I have to raise autistic kids. Not unlike my son, I lived for awhile in the center of a giant internal tantrum of my own over this, which eventually became unbearably painful.

I didn't want to do it. I didn't WANT to raise children with autism. Just like Cale hasn't WANTED to talk. I denied it, I was slow to take necessary actions, I've been angry about it, I've bargained ("please tell me they're actually normal and that the doctors have made a mistake"). And around I've gone with these things. I still have it in my head sometimes that they're going to "pull out of this" some day. But in reality that's not generally how it works. So for awhile I raged in my tantrum, and I think God sat there waiting for me to get done.

I hate to say that I've surrendered now and that it'll all be okay because I say that one week and then the next fight surfaces (this week it's the state again as well as the school district) and I spin off again.

But one thing has become as clear to me as the air I breathe. I can't spend my life in a tantrum. I can't keep fighting the reality. I have to do it no matter how I feel about it. So I might as well surrender to it.

Through this process I've found out that my inner peace is the single most important thing in my entire life. Now that may sound silly, but if I have peace then my kids will feel that too and I'll be able to keep moving forward. Therefore, I need to do a bit of work to keep it in tact and I need to protect it carefully.

When I feel my skin peeling off because the state says, "You have to ask for that in a certain way to get it for your son," and "No I can't tell you how to ask for it," I need to do whatever it takes to keep my peace of mind. WHATEVER it takes.

I use prayer and meditation, inspirational writing, I try to view the situation from another angle, and I try to find people to relate too, maybe even someone who is having a harder time than I am who could use a little help. Parents with autistic kids ALWAYS need help and they're not that hard to find. When I do these things my skin stays on and my peace of mind comes back again like rain on a garden.

The gift of even a few words for Cale has meant a serious lessening in all of his stimming and other disruptive behaviors. He still likes to dip his arms in up to his elbows in pee filled toilets. But he's happier. So I know it has power for him of which he is not yet entirely aware, if he'll just keep surrendering HIS will and keep moving forward with it. I know somehow that this is true for me too.

It's a beginning for the both of us.

The Saguaro cacti are blooming by the way. Just today I noticed a tiny pink flower peeking out of the sharp green thorns.

A Baby Victory

Baby Cale finally said, "pretzel!" Actually what he said was, "Ah-eah!" Close enough. It got him the pretzel!

Cale has always made sounds. He even said some words at one point in time, but that was a long time ago. Then he lost those words down some neurological laundry shoot and they never came back. I know he can count to ten. Sometimes I hear him whispering to himself, "One, two, tree, fou, fi, sik..." But he has NEVER looked at another person and attempted communication before. It was the first time my son has EVER asked me for something.

I started to cry giant rolling tears I couldn't hold back and I slipped that pretzel into his mouth faster than the speed of light. He blinked his eyes and began to chew slowly while the realization of the new found power lit up his whole face. Then he said it again and got another pretzel, then again and another etc. He said it each time without crying, and he quickly realized that it was his sounds that where getting him the goods.

My baby! He asked me for a pretzel!

It happened in our one on one therapy session with the ABA therapist at SARRC. She smiled and clapped and said, "Good job Cale!" with the same amount of enthusiasm she has to show to each and every client all day long. God bless those therapists. Shane asked her on the way in if she had any kids and she said, "Uh NOOooo!!" and then quickly catching herself continued, "maybe some day."

Later on I found myself realizing that if I'd worked there before I had kids, I never would have had any. And I never would have known the pure and total elation of having my son ask me for a pretzel.