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.