Again

Well, it's time to re-apply AGAIN for ALTC (Arizona Long Term Care - i.e. medicaid) for Isabel. We've managed to pay for a summer program that has included some group speech therapy along with guided social interaction. That and the feeding therapy are all of the therapies she's gotten so far.

She has yet to receive the therapies the doctors have screamed at me to get for her (one on one speech therapy, occupational therapy, and physical therapy). We haven't been able to afford them out of pocket. Shane got a second job at the community college, but he doesn't start teaching until August.

Everyone (Isabel's doctors, Cale's therapists, SARRC, the other autism moms at the support group) has exclaimed, "Isabel has been diagnosed with Autism 299 and has been TURNED DOWN by ALTC?!!"

"Twice," I say as I feel the shame rising into my eyes, "I must've done something wrong."

"Yeah. The questions they ask are geared toward developmental delay NOT autism. You gotta answer them in a particular way. You must have answered them wrong, that's the only way she could've been denied," they ALL say, trying not to directly accuse me of being naive.

One of our therapists explained it to me. She asked me this, "When you ask Isabel to go into the kitchen, does she do it?"

"No," I answered, "but she's physically able to."

"There's your problem," she said, "Don't tell them she's physically able to because then they write down that the answer is YES. With autism we are dealing with cognitive difficulties, the processing of information in a different way."

"We're not dealing with physical ability," she continued, "we're dealing with cognitive ability. But ALTC's questions haven't been updated to include autism yet. They're working on that, but they haven't completed the new set of questions yet. So you have to answer the questions they currently ask in relation to autism."

"But it kind of feels like lying," I finally confessed, the words stumbling out of my mouth unsure of exactly where they'd land. I began to cry as I explained, "I'm not someone who can afford to be dishonest."

"Okay," she said, "Let me put it this way. Let's say there was a fire inside your house and you had your hands full getting your other two children out, so you yelled at Isabel to go outside. Would she do it? Not CAN she, in this VERY life threatening situation, WOULD she?"

"No she wouldn't," I answered, the information clarifying like it had just been scrubbed with steel wool.

"How would you get her out of the house?" she asked.

"I'd have to physically remove her," I answered with tears forcing their way out of my eyes in spite of my best efforts to stop them.

"Then the answer to the kitchen question is NO," she finished.

Why do I struggle so much with this? I guess it's because it shouldn't be a freakin' guessing game to get my child help. Why the hell are they basing their decision on MY answers anyways when they can SEE RIGHT IN FRONT OF THEM exactly what the doctors and psychologists say? Why are MY answers the deciding factor? Shouldn't the the deciding factor depend on the PROFESSIONALS' ANSWERS?

I think it might just be easier for me to slam my head directly into a brick wall then to have to apply for ALTC again. "Why? Why? Why does it have to be so hard?!!" I want to ask. But I'll never be happy as long as I'm asking that question. The productive question to be asked here is, "How?" The past is done. How do I move forward from here? The question of "why" is really a hurdle to be poll vaulted over as fast as possible.

My DDD caseworker has asked me to get a psychological evaluation done by the school district's psychologist. The purpose is simply to add to Isabel's existing data, thereby giving her more of a chance of qualifying for ALTC. The more people who can point out all of my daughter's deficiencies, the better (God, save me from being angry).

The school district is fighting this. They don't want to do a psych. evaluation because Isabel just had one done by the neuro-psychologist and they don't feel they can add anything new. DDD wants one anyway. The school doesn't want to do it.

Just once I'd like to call someone up and ask for something and have them say, "Yes Mrs. Spears, we'd be happy to help." But honestly that doesn't happen very often. And being confrontational and persistent in an appropriate and polite manner isn't my strong suit. That is probably why God has given me so many spectacular opportunities in which to practice.

I'm growing more and more cozy with the feeling expressed by Shirley McClain in Terms of Endearment. "GIVE MY DAUGHTER THE PILL!!!!!" That type of attitude, however, doesn't work that well in the real world. Nor can my nerves tolerate living in that attitude every day (it's EVERY day with my kids).

It does fascinate and devastate me that we live in the twenty first century, that they know in a general way what will help children with autism, but that it's so incredibly difficult to get them that help. And it's amazing that every detail has to be a fight. I've never had to work so hard to see the good and the helpful in people.

The bottom line is that I don't get to fight. My peace of mind cannot withstand it. And the "good" and "helpful" that I see or don't see in other people is completely irrelevant. I've always heard that "peace of mind" has to move from my head (a concept that I understand logically) to my heart (something I know experientially). That sounds sort of sweet doesn't it? But it can actually be an incredibly grueling process.

In order to experience "peace of mind" I have to first know it's opposite right? Otherwise how would I recognize it as "peace of mind?" Well, I'm getting lots of it's opposite these days. Then I have to take actions based on keeping MY peace of mind. I have to feel good about my actions, no matter what. So I HAVE to take good actions, irregardless of the actions (or non-action) of others. Instead of blasting the school psychologist with a psychotic, "I have a right to a psych. evaluation and you'll give me one if it's the last thing you do!!" I get to ask for one politely over and over again, explaining why we need one over and over again if I need to. I don't have to go away, nor will I. I can keep my big fat smiling face right up in their business until they do what needs to be done.

There's nothing I can do to change another person. I can't MAKE them be helpful (or do anything I want them to do). All I can do is my part, which shifts constantly in relationship to the current situation, in a kind and loving but persistent manner. It may piss them off but that isn't my problem. If I've smiled and conducted myself in a kind and polite manner then I can go to sleep tonight knowing I did my part well. And that's all I can do.

Sometimes accepting a situation is about accepting that I do have to do something about it, even and especially if I don't want to do something about it. That "something" however, isn't always what I think it is. First I have to find out what I need to do. Then I need to do it lovingly.

I have not yet found a way to get help from the state. So I'll just keep reapplying over and over and over and over. I'll take up as much of the state's time as I possibly can and I'll never give up. But I'll be polite through the process every time (this is my ideal, which I fall short on a lot).

I have found several things that help in dealing with the school system though.

It's really important to know ALL of the information. I cannot make ANY serious decisions without ALL of the information. I have to know the education laws and what my rights are. Then, as much as possible, I have to become familiar with the usual tricks and games that the schools in my district play. This information only comes from experience and asking lots of questions.

I hate to actually say it's wise to not trust anyone in my school district because that's just not a healthy attitude to take on. So let me put it this way. Never underestimate a person's uncanny ability to avoid work. They're probably overworked. Or maybe they're disorganized. Or they might be busy thinking about their own lives, the health of their children, the next doctor's appointment, how they'll get kid #2 to the soccer game after school, etc., etc., etc. It isn't personal. They're human beings with their own agendas just like me. But keep this in mind and don't get hood-winked with, "Oh that's unnecessary" or "We can do that later."

An example of this happened when we put together Isabel's I.E.P. for kindergarten. We told the "team" repeatedly that we'd need a few days with the final document once it was complete before signing the "final draft" of the I.E.P. document. They said they were waiting for Isabel's previous school to send over her academic goals and that they'd put those in later. We assumed that since we hadn't signed the I.E.P. that we'd be finishing it up and signing it in the fall.

Well, they filed it as a complete and final document (academic goals and special services areas left blank). They informed me this morning when I went in to request the psych. eval. that when we signed the page that said we were at the I.E.P. meeting that THAT WAS SIGNING THE I.E.P. and that their intention was not to meet again. As far as they're concerned, it's complete.

So, now I have to wait until school starts and call another I.E.P. meeting. And do I want to walk into the meeting screaming like Shirley McClain? Yes I do. Will I? No I won't. I can call an I.E.P. meeting every single day if I need to, smiling and lovingly not going away until we have a complete I.E.P. Do I wish they'd advocate for me instead of weaseling out of things? Yes I do. But can I expect them to? Nope.

The one thing I can trust is that God loves my kids more than I do. I know! It doesn't seem possible! But he does. I always hear, "God will not do for us the things we CAN do for ourselves, but he WILL do for us the things we can't." If I'm doing everything I can do for my kids and I miss something crucial, God will take care of it. I know that from experience too.

I've been praying for guides. For therapists that actually know what they're doing with autism. I always end the prayer with, "if it be your will," so I know I'm not just forcing mine. And finally I found an occupational therapist that has years of experience with autistic kids. One of the kids he helped was eighteen years old and was confined to his bedroom because he couldn't stand to wear clothes. It took a lot desensitization (first we touch the sock with our hand, then we touch it with our foot, then we put it over the foot, and so on and so forth), but he finally got him into clothes and he is no longer confined.

He took one look at Cale and I swear the look on his face said, "You little shit."

"YESSSS!!!!" I thought. An attitude of "Oh we don't want to upset him" will never produce results in MY son. We're going to need to upset him. And I finally found someone that'll kick his little butt into gear!! My angels are always there in some form. I just have to spot them through all the human nature out there.

Perception

I have always been in love with art. It doesn't matter what kind it is. I love it all.

I remember signing up for my very first painting class when I began high school. The class was held in a second story, corner classroom of my old brick high-school. It was one of the original classrooms, had super tall ceilings with duct work hanging out of the plaster, and floor to ceiling windows along two walls. It was the sunniest, most magnificent room I'd ever been in and was the work place of an art teacher I admire to this day. He inspired my dream of becoming an art teacher myself and I have always dreamed of teaching in that particular classroom.

This teacher had collected a variety of art work from students over the years and these perfect pieces adorned the classroom walls with bright colors and an impressive sense of three-dimensional skill. I was slightly intimidated at the time and didn't think I'd ever be able to make art like that. This feeling, along with the encouragement of the teacher, drove me to give art making an honest try.

I immediately fell in love with the smell of canvas, paint thinner, and the ease with which painting came to me. Over the next couple years I proceeded to take every art class the school had to offer in a variety of classrooms not half as awesome as my original painting classroom. After I'd taken them all, I asked my school counselor if I could keep taking painting.

He told me I had to ask my original painting teacher for special permission to take advanced painting classes in his classroom. "Advanced" painting in high-school actually meant, "the same painting class over and over again." The only thing that actually "advanced" was my ability and that was a direct result of my teacher's ability to teach students with differing skill levels during the same hour. He let me in.

My goal in "advanced" painting was to paint photograph-like copies of various things. I'd worry about abstracting and creating "original" ideas through art later, but first I wanted to master realism.

I became obsessed with painting trees to look like trees, water to look like water, and faces to look exactly like the faces I was trying to replicate. I wanted a person to be able to look at my painting and say, "Oh! That's so and so!" I sucked at this by the way. It was never a natural gift and I had to learn how by working hard at it.

One day, as I was wrestling with painting an image of a tree I had a photograph of, my teacher came over to see what was wrong with me. "Why can't I get my tree to look like this tree?" I asked him, showing him the photograph and tearing up. It was right then that he told me a valuable secret. It's one I use to this very day.

"You're too busy looking at the details," he said, "See? You're perception of the whole tree is off as a result. Do you see how the whole tree is shaped like this in the photograph, but it's shaped slightly differently in your painting? As long as the shape of your tree is off then your details, no matter how accurate you get them, won't match the photograph. You have to look at something and see what's actually there instead of seeing what you think should be there."

I've just had a more recent lesson in this very same principle.

My Cale's newest favorite thing is the sound of shattering glass. I have been so threatened by this that it has seriously colored my perception of the situation. When you see a kid that shatters glass things, what do you think of? I don't know about you, but I see an incredibly disobedient and out of control child. I also see a bad mother who hasn't enough control to keep her child safe. The problem is that this mother is me.

Cale has always liked the sound of things crashing into the floor. He throws his plate of food on the floor with EVERY meal, not because he's not hungry, but because he cannot resist the sound it makes as it hits the floor. As a result he goes hungry a lot because at my house, once your plate of food hits the floor, you are done whether you're autistic or not. I don't care.

Lately it's become more of an obsession than usual. It's become more intense. It's no longer enough to throw his dinner on the floor. He actually wants to hear glass shattering. He waits until I'm busy with one of the other kids and then he quickly pushes a chair over to the counter top, climbs up onto it, grabs a glass or a dish, holds it up as high as he can and drops it onto the kitchen floor. If there isn't anything breakable on the counter top then he gets into the cupboard and gets out a plate or a glass.

He absolutely squeals in delight as it shatters against the floor and sends shards flying in every direction. Yes I know. He could fall. He loves to fall. In fact he jumps, arms flying into the air, off the counter tops. So far I've always been there to catch him. But, if I'm not one of these times then he could fall onto the floor. Into GLASS. He's broken almost all of my dishes.

We also have a balcony (loft, or whatever you want to call it) on our second floor that opens onto our living room. It's tall (we have tall ceilings) and is probably at least a one story drop (inside the house). We bought the house BEFORE we knew about Cale. He loves to hang things over the railing and drop them off the balcony into the living. Not stuffed animals. No. LAMPS. If someone ever walked in at the perfect moment...oh man.

I do have a time out chair that Cales hates that he's put into every time he does these things, but it doesn't seem to teach him to stop. I've always gotten this vague feeling that he genuinely cannot resist.

Any time I hear the distinct sound of a scooting chair, I run to the kitchen as fast as I can and catch him jumping off the counter. But there's not much I can do to predict the balcony thing. I've removed all the lamps but he's just found other heavy things to throw over. And the baby gate doesn't keep him from going upstairs anymore. He can just push through it (he is almost four years old). So I've told the other kids to just be very careful about walking under the balcony in the living room.

For Alden's birthday party on Sunday we rented a bouncer and someone landed right on top of Cale's head with all of their weight. He cried for a minute and then stopped, but kept grabbing at his head. I've always had a bit of a sense that he doesn't feel pain as intensely as he should, and that he can't tell me if or how bad he's hurt. So it's up to me to guess. Shane looked for an open Urgent-Care, but it was Sunday night and none were open. I seriously considered taking him to the emergency room.

I could just imagine CPS or an investigating police officer saying, "Someone landed on his head and he doesn't communicate or feel pain correctly? Why WOULDN'T you have that checked out?" Then I would try to explain what it's like to chase an autistic child around a gun shot filled emergency room for four hours late on a Sunday night. I can hear myself now, "Believe me officer, you'd risk some one's life to avoid that experience as well." I'd then be arrested and put away for life. Hmm. Oh never mind:)

I watched him for two hours for all the signs of concussion. I fed him a giant bowl of cereal and chocolate almond milk and he didn't puke. I also watched his pupils which seemed normal (but again with autism you never know if the body is reacting the way it should). I had nightmares all night about Cale not waking up the next morning. I cried and prayed, "Oh God, I can't do without my baby. Please, please don't let him be hurt."

The next morning I had an appointment with the developmental pediatrician. I told him about the incident and asked him to check Cale's head. As he ran his fingers over Cale's skull, he reminded me of the fact that Cale doesn't communicate and will not feel pain correctly. "Oh yes," he said, "he's got a heck of a bump back here but he's going to be fine." I asked him if I should've taken him to the emergency room the night before and he said, "Oh NO...it would be HORRIBLE to chase an autistic kid around an emergency room for four hours late on a Sunday night!"

The occupational therapist came last Friday to do an evaluation on Cale. He explained to me the difference between sensory SEEKING behaviors and sensory AVOIDING behaviors. And for some reason it wasn't until right then that it all became so clear.

"Oh my God," I thought as the therapist talked to me. Once again, it's a matter of seeing what's really going on instead of what I think is going on. Cale isn't trying to drive me insane. He's trying to get his needs met.

Isabel's autism is a bit different than Cale's. Isabel is sensory AVOIDING. Her senses are heightened. She feels things too intensely. She can't stand tags in her clothes. She feels movement too intensely and doesn't like to be twirled or do anything that might require balance. She also can't handle a lot of auditory stimulation for long periods of time. She can only stand a grocery store or a noisy daycare room for about an hour before she starts melting down. She also tastes and smells food too intensely which is why she won't eat much and is malnourished. She now sees a feeding therapist for this.

Isabel needs to avoid intense sensory experiences. She requires a lot of soothing sounds and quiet time. She loves to do quiet things like snuggling, reading stories, making art, and doing puzzles. She has recently discovered my piano which she plays quietly. Cale's screaming and chaotic behavior sends her over the edge. She plugs her ears and cries when he screams, which he does all the time.

Cale is sensory SEEKING which means he doesn't feel anything intensely enough. Therefore he seeks out intense sensory experiences. He screams just to hear himself scream.

The O.T. explained to me that Cale actually, physically NEEDS intense sensory experiences and will seek those out in any way he can. He told me he could give me some things to do with Cale for auditory stimulation. Then maybe he won't have to break my dishes and drop things over the balcony.

This explains why my baby doesn't respond to his name or any other words. He doesn't respond to most voices at all unless I yell at him. He actually loves it when I yell at him and will keep doing whatever it is I yelled at him about to get me to keep yelling. He actually WANTS the auditory experience. It's the exact opposite of how my other kids react to my yelling at them.

This also explains why he seeks out intense movement like falling, spinning, jumping, etc., and is why he loves to jump, with all of his might, off the counter top.

It also explains why he lays down and starts humping the floor when he's stressed. He did this right in front of an ABA therapist at SARRC one day and she explained to me that this is called "stimming" which is short for "self-stimulatory behavior."

"Yeah," I said giggling, "I've heard other technical terms for that one." I got embarrassed for Cale and picked him right up. He screamed, cried, hit me, and got so mad!!

"Geez," I said, "I didn't think interrupting him would be THAT big of a deal!"

Shane looked at me and said, "Sweetie, he's a boy. And he wasn't done yet." All three of us (including the therapist) laughed until we cried!

Thank God for the O.T. I really started to think Cale was just out to make me crazy. Maybe now that I can see what's really going on I'll be able to stop trying to punish him and try to teach him more appropriate ways of getting sensory input.

By the way, I did become an art teacher myself. I don't teach anymore. Now, I just take care of autistic kids. And I never did get to teach in that classroom (in fact my old teacher is still teaching in that same classroom), but during the year I taught I did get the opportunity to participate with him and a variety of other art teachers in putting together a district wide art curriculum. That was more than I ever could have asked for.

The other art teachers gave him a hard time for not remembering me. "How could you not remember a name like Womeldorf?" they laughed at him. I wish I'd told them all that I'd become a teacher because of him.

One of the evenings that we met to go over the new curriculum, we all met in his classroom. It was exactly the same. The same art work that intimidated me as a kid was still there adorning the classroom walls. It looked different to me though. Instead of an impressive sense of three-dimensional skill, I saw the shotty, rushed art work of stoned high school students. "Whoa," I thought to myself as I let what was really there sink in.

I really hope I can look back on the childhood of my children in the same way. Not so intimidated by the difficulty of it all, but as a seasoned autism mom with some experience to give away. I suppose I will if I can just keep remembering the secret of the teacher with the best classroom in the world.

Expectations

During one of our first dates, Shane told me he liked clean kitchen cupboards. You know? Actually wiped out underneath all of the cans and stuff. He was twenty seven when we got together. He'd been married once already and thought about things like kitchen cupboards. I was twenty two, still somewhat resembled a wild animal, and had never even once considered the state of a kitchen cupboard before this conversation.

"I agree completely!" I lied through my teeth, "I hate dirty cupboards."

Shane was the most gorgeous creature I had ever come into contact with and I really, really wanted him to like me. "I can keep cupboards clean," I thought to myself, "How hard could that be?"

I thought about that conversation this morning as, almost fourteen years later, I set the sugar jar down in the cupboard and listened to it crunch on the layer of crumbs underneath it. I was in the process of digging my way through the cupboard looking for birthday cake mix. We are celebrating Alden's seventh birthday this weekend and I have a hell of a party planned.

Alden has the same capacity for expectations as both of his parents do. Yeah, I know. This is going to make for a long life. So naturally, I'm a bit nervous about his party.

I've rented an inflatable bouncer for the back yard, bought Sponge Bob cupcake holders complete with toppers, balloons, streamers, little lollipops and blow horns as party favors, and invited about eight children and their parents over for an evening of bouncing and pizza in the shady back yard. However, most of the parents have R.S.V.P.ed and there are only about three children planning to attend the party so far. Oh, I hope this is good enough.

The first time Alden ever entered our house, he ran upstairs and thoroughly explored each bedroom. He found the master with it's garden tub, double sink bathroom and it's sliding doors that open onto a private patio, and he decided to claim it as his room. For the next several weeks as we closed on the house, he talked about having his own big bedroom with his own big bathroom in the new house. Unsure of what exactly he was talking about, I didn't tell him that the master would be Mommy and Daddy's room. So it got good and stuck in his head.

On moving day, as we began moving our bedroom furniture into the master, he told us in no uncertain terms that he had claimed the "big room" as his. Then he proceeded to inform me of exactly where we should place his bunk bed.

We couldn't help but giggle, of course, before telling him that the little yellow room would be his. The look on his face as the reality sunk in touched my stomach with a truly odd mixture of sadness and hilarity. I really had trouble believing it. My sweet, ballsy little son actually thought he'd get the master bedroom!

He cried about the loss for two days, periodically trying to get me to change my mind and give him our room. The poor little guy felt genuinely ripped off. I wonder sometimes if Shane ever feels like this about my housekeeping abilities.

Luckily, I know all about expectations. I have thousands of stories in which I've been deeply disappointed in things not going my way. I suppose keeping my expectations in check, ideally having none at all, is one of those supreme lessons in life that make for fabulous birthday parties, whether they are fabulous or not. Wish me luck.