Friday, April 2, 2010
Breakfast
I woke up this morning irritated with God. Not a sudden and furious, punch holes in the walls kind of irritated. Instead it's an irritated that has grown slowly, almost un-noticed, like clutter on the counter top. One piece goes unnoticed. Two might spark a second of attention, then another look away. Three starts to feel uncomfortable but still isn't enough to do anything about. Then one day you wake up and you can't see the top of the counter and the magnitude of the chore ahead overwhelms.
I can't see the top of my counter.
I heard a fantastic speaker one time who talked about being angry with God. He said that if you have a friend that you can't be angry with sometimes, then it isn't a real relationship in the first place. He said he likes to think he has a real relationship with God and that means there's times when he gets angry with him.
The NEW Medicaid medical investigator came over yesterday to do Isabel's THIRD interview. She was really very kind and informative. She explained to me that there are two different assessment tools used by the state.
The first is based on the development of a 0-5 year old. It includes all the stupid questions we've been answering for the last nine months (this is our third time through the interview process), such as, "Can she roll over?" Yes. "Can she dress herself?" Sort of. "Can she bathe herself?" No. And so on and so on. It does NOT focus on lack of communication and head banging because these behaviors are fairly normal in toddlers.
These behaviors, however, are NOT normal for children over six years old. The second assessment tool is based on the development of a 6-9 year old. It focuses on lack of communication and self/other harming behaviors.
The medical investigator confessed that if they were to use the second assessment tool for Isabel, she'd be accepted into Medicaid with flying colors. But because she's only five and a half years old, they cannot use the second assessment tool. They must use the first. And since Isabel is actually doing quite well compared to a nine month old, she didn't think that Isabel would qualify at this time. She recommends we re-apply in December when Isabel turns six.
So the question remains, how do we come up with the $1200. per month (out of pocket) it will cost to get Isabel's most basic therapies (speech and occupation therapy) until December? The worst part is that Shane and I disagree on how to go about doing that. It's funny how un-manageability in one area of my life always shines onto every other area of my life, illuminating their deficiencies as well.
I was up until 11:00 last night preparing for Isabel's I.E.P. meeting, which was this morning. There are always so many things to do. I finally went to bed picking at God over the Medicaid deal regarding Isabel. Then I began cursing him for it all.
Isn't it enough that I moved to Hell? That alone should've been enough. It's not enough that I've moved away from the place I know and love? The place we'd have HELP from family and friends with our kids? Isn't it enough that we have to do this alone?
And isn't it enough that I've sacrificed my dreams so that Shane could try for his? And isn't it enough that you've given me two Autistic kids and that every attempt to help them is met with a brick wall? Now we have to come up with all this extra money we don't have? Now we have to look at possible financial devastation? OR taking on extra jobs (with time and energy we don't have) to make ends meet? When will it end? And where the hell are you anyways?
I climbed into bed, desperate for a moment of T.V. to shut my brain down before going to sleep. On the T.V. was a story about a village in southeast Asia who'd lost a years worth of rice crops to an infestation of black rats. "Oh man," I thought as I watched these people search their fields for any surviving kernels. For a second I felt grateful, then I caught myself and said to God, "Wait a minute. I know this trick. It isn't going to work this time. You still suck." And I went to bed irritated with God for forsaking us AND for destroying the rice.
After the I.E.P. meeting this morning, Shane and I went to breakfast to discuss things. Honestly, I should've known better.
We showed up at Cracker Barrel and sifted through the endless knick knacks. Clutter of this quantity feels to me like noise. There were bird house wind chimes with dangling tea cups and saucers that, I guess, clank into each other in the wind. There were clothes and quilts and blown glass trinkets of every kind that might topple, with one touch, into a giant broken heap. There were porcelain dish and tea pot sets with blue and purple and pink flowers lining their bubbled shapes. A little tin house shaped hanger that said, "Home Sweet Home" made me wonder if I'd ever be a grandmother.
There were heart shaped hearts on heart shaped things with heart shaped letters on them. Hearts, hearts, and more hearts. It made me wonder if they'd realized that Valentine's day is long dead. Never before have there been more hearts, flowers, and bird house shapes, compacted into one location.
Stuffed white Easter bunnies with brightly colored eggs sewn carefully onto them, hung over the edges of wooden shelves, tempting children to pick them up and squeeze their heads. Tiny T-shirts that said things like, "Being this cute is a full-time job." lined the isle along with endless piles of candy, lemon drops, Black Jack, and Clove gum.
I had to go into the bathroom to escape the knick knacks. It was quiet in there and it smelled like lilac scented lotion. The bathrooms at Cracker Barrel always smell good. As I was looking at my eyes in the mirror, I slowly became aware of the soft music playing on the overhead speakers. I recognized the song I used to sing to God under my breath at the coffee shop I worked at during college. It's called "I Still Believe in You." It was a tacky, country version of the song, and I really wasn't in the mood. But, it got the point across. "Okay," I said, "I hear you. But I'm still pissed."
My husband and I sat down and ordered pancakes, sausage, and hash brown casserole (yum). Then we talked about the money. All of a sudden, the chattering of the other people started to crawl up my back and the number of small items on the table seemed to double in number. And Shane's voice got loud in my head. Much louder than he was actually speaking.
He was getting irritated and was saying, "I'm just saying there are other options. The house will be the last thing to go. I'll deliver pizzas at night if I have to. And you could find a job with insurance that covers the kids."
"Like what?" I asked, a little stunned that he was serious.
"You could teach," he replied in an accusatory tone (my perception) with his face two inches from my nose, but not really. It just felt that way. He was actually sitting across the table. "I cannot imagine that what is best for our children would include losing the house," he continued.
And then I said, "I can't imagine that having a mom that's gone all day is what's best for them either. Maybe this fall when two of the three are in school."
The magnitude of EVERYTHING suddenly slammed into my brain all at once, and my head started to spin like some sort of giant washing machine. How can we do it all?
I'm reading books on diet, trying to make and find gluten/casein free foods. It takes me a full day to bake a week's worth of gluten free foods.
I'm reading books, and I have more to read. I'm learning about speech therapy which it looks like I'll have to do with Isabel myself. I've learned that speech therapy and O.T. go hand in hand because a person really needs both to build the proper muscles for speech. So I have to become an O.T. too.
I'm learning about Physical therapy, and feeding therapy. I'm learning about various behavioral therapies including DIR, ABA, PRT, VBA, Hanen program, and RDI and I am making a desperate, rookie attempt to apply some of them with Isabel and Cale. It takes implementing a behavioral approach on a constant basis for it to be effective with an autistic child.
I have a book on my top priority list which I'll read when I get to it, that can serve as a foundation for reading the more challenging books on bio-medics. I'm learning about DAN! doctors, different developmental pediatricians, psychologists, vitamin supplements including B12 shots and Vitamin D, herbs that detoxify the system, gut problems, immune system problems, chelation therapy, etc., etc., etc.
My task is to become an expert in a bunch of different professions, in a very short amount of time (my kids' well-being is at stake), professions people take YEARS to become experts in. And I'm just BEGINNING to learn how to work the school district.
How can I be a good mom to my autistic kids, with ALL that entails, and try to teach full time? It's not the teaching that bothers me. In fact, being an art teacher instead of an autism expert is incredibly appealing. But both?
It was hard to do it back when we lived in Montana, had ONE normal child, and had a lot of family and friends around to help. Now, with what our lives have become, I have no doubt it would rip our marriage apart like a pack of coyotes on a bunny. We barely get it all done as it is.
You see, Shane doesn't mind living life at 6 million miles per hour. He rather enjoys it and would be happy if I did too. I, however, CAN'T STAND it. I won't risk the well-being of my children to hang on to a tract house. And he won't risk their well-being by letting them lose the home they know. The situation truly looked impossible and I left the restaurant thinking, "God does TOO give us more than we can handle!"
We didn't speak throughout the rest of breakfast or on the way home, and I silently told God to shove his song where the sun doesn't shine.
Shane's been applying for evening teaching jobs at the community colleges for like, two years now. Like I said, he likes to live at 6 million miles an hour. He'd NEVER heard back from any of them before. But, when we got home from breakfast, he had an e-mail from one of them asking for his transcripts. I know they'll like them. Shane always made perfect grades. Maybe if he gets in, they'll look at mine too. Maybe they have art classes in the evenings.
It's a possibility that's never been a possibility before, so there is a spark of hope.
And I did find out, just today, that Medicaid will help Cale. In fact, he qualified in less than a week's time. He is "in immediate danger of being institutionalized." All the medical investigator had to do was look at him to see that. Not only were they right on qualifying him, but they want him to to get IMMEDIATE care. Finally. I'll get some help with my Cale.
So, who knows. Maybe the old adage is true that "God always shows up just in time, he just never shows up early." Jerk.
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There aren't words to express how much I adore you. The fact that you continue to share with us your struggles and truths in such an exposed, hilarious, delicious way about things so awful and heartbreaking and trying is beyond my comprehension. God did, indeed, choose you wisely. You ARE spinning it into gold!!!!!
ReplyDeleteIf the "Julie" from the recent Julie and Julia movie, bridged her writing (including a blog) to a book that the movie screenplay was based on....MAYBE you could provide your experience and walk with Autism --- as you said in an earlier post, there isn't much out there for the moms/caregivers....
ReplyDeleteJessica, I am so glad to hear that Cale will be getting services! I'm sure that by seeing how they work with him it will help you figure out how to work with Isabel. I know it is frustrating and challenging to say the least, but it sounds like you are heading in the right direction. Your children are lucky to have such a dedicated and determined mom.
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