The Gym

I went to the gym yesterday afternoon with all three of my kids. Those of you who have babysat all three of my kids at the same time, know that it isn't nice of me to bring all three of them anywhere. Especially, to the small, over-crowded, windowless babysitting rooms at gyms, which try to contain lots and lots of noise. A place like this is called HELL for an autistic person.

Now, I KNOW I should mention my children's autism when I sign gym memberships. The problem with telling is that, when you mention any sort of special needs, people tend to immediately (and without gaining any additional information) say, "Sorry Ma'am, we simply don't have the resources to deal with special needs children." So, I often times, sort of on purpose, forget to mention it. Whoops.

My greatest fear is for us all to be held up in the house all the time, like a prisoners, with no ability to go anywhere. It's awfully easy for us to isolate, precisely because it's so painful to see what happens to my kids out in public. And we do isolate, with too much regularity. It isn't good. At some point, my kids are going to have to become part of the world, whether they like it or not (and whether the world likes it or not). So, I just don't tell.

I remember one time, when I had a membership at the local YMCA, I took a yoga class. Notice, I said ONE TIME. I was in the middle of yoga class, on my little mat, the soft music filling the room and my muscles with peace and quiet. Everyone was stretching, and peaceful, and serene, when all of a sudden, BLAAAM!! Someone cranked the loud door open, jarring everyone out of their meditative state. One of the daycare providers came through the door and said in a monotone, yet incredibly loud voice, "MRS. SPEARS. YOU'LL NEED TO COME GET YOUR CHILDREN FROM THE KIDS CLUB PLEASE." I had to noisily pack everything up in front of glaring eyes, and go get my kids and take them home. "Oh well!" I thought, "It was worth a shot."

The YMCA had a policy that if a child cried for ten minutes straight, they'd come and get you and you'd have to take the child and leave. My kids learned that fast, and for thirty days in a row (before I quit going there) they came and got me after ten minutes.

I've been through four different gyms now. My kids always have problems in the Kids Clubs at the gyms. They scream really loudly, cry, hold their hands over their ears, bump their heads on things, and generally speaking, freak people right out. And, of course, they can't be consoled because they don't like to be hugged (Cale especially). Therefore, they scream the whole time I'm gone. This upsets the day care providers as well as the other children. They usually don't harm anyone else, although Isabel did kick a gym daycare provider in the throat once. Still, with all the screaming, we usually end up getting kicked out.

They have a Kids Club at this new gym I've been experimenting with. I've been going in the mornings when it's quiet, and I just take Isabel (the boys are both at school in the mornings). She's been doing pretty well there during the calm morning time, so they haven't yet noticed that any thing's wrong with her. Yesterday, however, I didn't get a chance to go in the morning. So, I took them all there after school. It was risky. Isabel actually did pretty well. Cale, however....well, let's just put it this way. It's becoming increasingly difficult NOT to notice that something is wrong with him.

I worked out on one of the elliptical machine for about twenty minutes until one of the treadmills opened up. The pattern of movement felt really good and just as my muscles started to settle in to the calm of the repetition, I heard Cale start screaming. About then, one of the treadmills opened up. I got on it and started running. It was facing away from the kids club. I closed my eyes and imagined that I was running far away from the screaming. I recited, under my breath, "Run away, fast, far far far away." It did something terrific for my soul.

I ran two miles flat before my body started aching. When I opened my eyes and remembered where I was, Cale was still screaming. The whole gym could hear him. I shut down the machine and went to the Kids Club.

The lone day care provider was on the phone with the front desk when I walked in. She looked at me and said, "OHH! I was just going to have them page you!"

"Why? What's the problem?" I replied, playing stupid of course. Cale was on the floor, face up, in the center of the room. All of the normal children were running around him, carefully not stepping on him, and laughing and playing cheerfully with each other. He was bumping his head on the floor and screaming at the top of his lungs.

The day care girl was one of those 'perma-grin face' people. You know the ones? They look like they're smiling all the time, especially when they're upset. Those faces make me nervous.

She had tears in her eyes and a big wide smile on her face. Breathing deeply, she said, "He's just...screaming. And...he won't stop!"

I did manage to muster up an ounce of guilt. I really did. But, it didn't last long. I've felt so much guilt for so long. Any time I've had to take my kids anywhere I've felt guilty. Guilt, guilt, guilt. And, frankly, that's getting old.

I kind of wanted to say, "You know? I've been doing this for so long. You've only had to do it for fifteen minutes. Why is it so difficult to do it for fifteen minutes?" (I'd been there 40 minutes. But, he'd only been screaming for 15 of those minutes).

I didn't say anything, of course. I just kept my lips zipped, grabbed up the kids, thanked her, and left. It's not her fault. It's not any one's fault. They're my kids and my responsibility. But, I'm not going to stop trying to take them out of the house. They aren't wild animals. They are children. And they have just as much right to be in this world as anyone else.

Have you seen the movie Temple Grandin? It's an HBO on demand special. One of my favorite people pointed it out to me. It's a true story about a woman who was diagnosed with Autism in the 1950's. The doctor told Temple's mother that it was her fault Temple was autistic. They used to think that autism was caused by the mother withholding affection during a crucial moment of development. They, obviously, know now that's TOTAL bullshit.

The first time I watched the movie I just cried. It was way too close to home for me. She's so much like my kids that I just cried. The second time I watched it, I came away with a profound sense that my children are on this planet for a reason. A very special reason, that they won't have a chance at if they never learn how to deal with people.

One of the things Temple's mother did, was she made Temple be a part of the world. She didn't let her isolate from other people, even though other people made Temple incredibly uncomfortable. This forced Temple to learn some social skills and although she never got really comfortable with other people, she was still able to take her gifts out into the world (whether people liked it or not) and make a real contribution to society as a whole.

I only hope that I can be so strong as my children grow up and their autism becomes more obvious to strangers. We cannot hide in the house. They MUST be around others, even if it is painful. It's their only chance. I pray regularly for the strength to not hide them.

We didn't go to the gym today. Hopefully, the daycare lady will get healed up enough that she won't cringe then next time she sees us coming. Because, we'll be back again.

The Whole Picture

Disneyland was awesome. Thanks for asking!! I never thought I'd be a Disneyland lover. I'd so much rather be a sophisticated snob, preferring New York to L.A. I do like architecture, museums, and art. But Disneyland is just so fun!!

It's like walking straight into the 1950's with it's miniature main street and pastel color scheme. I don't think one thing has changed since the day the park opened. I love things that stay the same. Walt's vision is still alive and well everywhere you look. Everything is adorable and perfectly maintained. There's not one flower out of place in the mickey mouse shaped flower beds, not one leaf left untrimmed, not one spot of peeling paint, not one carelessly placed wire on any of the facades. It's absolutely perfect.

It's big, bright, loud, expensive, and American to it's core. Everything is fake. Even the lake is pretend. It's only six feet deep and the ship is pulled along with cables. I've actually reached out and touched plants along the water, only to realize that they too are plastic. The amount of work it must have taken to create this place is unreal to me.

We go there every year, WITHOUT our kids. We took our kids once and Isabel just walked around and cried all day with her hands over her ears. I thought she might lose her mind completely during the fireworks display. It was all WAY too much stimulation for her. So, we just don't take them anymore.

Shane and I have a great time when we go. We're like a couple of children at the hotel the night before we go to the park. We jump up and down on the bed like big dorks, singing the Pirates of the Caribbean song. The next day we get to the park, ride on all our favorite rides until we're about sick, walk until our feet feel swollen, and then sit down to a meal of powdered sugar fry bread and mint juleps. We listen to jazz music, bask in the L.A. county sunshine, and remember why we got married.

We know it's money we shouldn't spend. But, it's such a refreshing way to forget everything for a little while and just let ourselves be wowed and dazzled and entertained. It was fantastic, but we're back home now.

Isabel saw the neuro-psychologist on Monday of last week. She held up so well that they did all of the testing in one day. We haven't gone in to discuss the details of the final report yet. Our appointment for that is next week. She did call though, and give me an overview of Isabel's condition.

She is autistic (umm-duhh!). Isn't it great to pay thousands of dollars to get information you already know? It's okay though. This is a report we'll be able to use for years to come through Isabel's schooling. It really pin-points her weaknesses AND her strengths and will help us to know exactly how to help her.

Isabel's biggest problem is her language delays. She's severely delayed in both her receptive and her expressive language (in other words, she doesn't understand what you're saying to her AND she doesn't know how to communicate what she wants to say to you). This is severely affecting both her ability to learn AND her social skills. She needs speech therapy badly.

She also needs some occupational therapy to help her learn how to take care of herself physically (dress herself, wash her hands, brush her teeth, etc.). She's not yet able to care for herself the way a five year old should.

The neuro-psychologist is much more concerned about the acquisition of these skills (language and occupational skills) then she is about her autism. She even went so far as to say that if we put her back on the gluten-casein free diet AND get her speech and occupational therapies, that there's a good chance she'll be mainstreamed some day.

She said that even though her autism will never go away entirely, there's a good chance that with the proper help, a future professional may not notice her autism at all. I think those were, quite possibly, the most comforting words I'd ever heard in my entire life. "with proper help.....may not notice her autism at all."

So the next step, then, is to get her the help.

The Medicaid medical investigator came on Wednesday of last week. I cannot tell you what this did to my nerves. DDD requires you to apply for Medicaid for your autistic child regardless of your income. Even Jenny McCarthy had to apply for Medicaid for her autistic son. She, however, was able to pay the $4000. dollars a month out of pocket for the therapies until Medicaid kicked in. We aren't able to do that. So, we have to wait until Isabel qualifies for Medicaid before we can get her therapy.

In order to qualify for Medicaid, Isabel has to be in immediate danger of institutionalization. Otherwise, they won't help her. And our insurance company doesn't cover anything for autism or developmental delays, so they won't help her either. If our insurance company would pay (even in part) for Isabel's therapies, then we'd be able to get them for her NOW and we wouldn't have to bother the state at all. But, they won't. So, unless we can come up with $4000. dollars per month (per child, remember I have Cale too, so that would be $8000. per month) she won't get any help at all, UNLESS they determine she's in immediate danger of institutionalization.

Wow. Thank God I'm not the one to determine whether or not she's in danger of institutionalization because I'd, of course, NEVER put my daughter in an institution. To be perfectly honest, I'm really not sure HOW they go about determining this. I know the last time I applied for Medicaid for Isabel, she had huge check marks under each of the categories they listed. Still, they turned her down. And, I really don't know that it'll be any different this time.

In order to re-apply for Medicaid, I had to prove that something was medically different then last time I applied. The one thing that is different this time than last, is that she is slightly malnourished. This did catch the attention of the Medicaid medical investigator. Isabel has actually lost weight since last summer because she won't eat any protein. This is due to the sensory processing problems she has, due to her autism. Food, especially protein, tastes very strong to her, therefore, she won't eat it.

This is why the developmental pediatrician has just diagnosed her with a feeding disorder and has determined she needs feeding therapy (which the insurance company won't cover because it's due to her autism). Not only is this new, it puts her in danger of eventual hospitalization (I don't know if this counts as institutionalization or not, but it should count for something).

I followed the advice of our DDD case worker and gave Isabel gluten and casein for the few days prior to the interview so that the medical investigator could see what Isabel is really like on a regular diet. This was risky, because gluten tends to cause more malnourishment. But, after some serious soul searching, I did it anyways. Better to get her the long term help.

My case worker also prepped me on how to answer the investigator's questions. She said, "You need to describe Isabel's worst day, not her best one. You need to describe what it's like MOST of the time. You need to NOT tell them about the occasional successful moment. Understand?" These words repeated in my head over and over during the questioning. Isabel sat under the table and cried during the interview, which helped me to remember my purpose.

My DDD caseworker (my angel) warned me about his medical investigator. She said "This person will seem very nice, but, SHE IS NOT YOUR FRIEND." To make matters worse, I know that my perceptions of what Isabel can and cannot do are OFF. I see all the things she does right. I WANT to see what she does right. And, figuring out exactly what is normal and what isn't is too hard for me. So, I did what I was told and just described her worst day like it's that way every day. To me, it felt a little fuzzy in the honesty department. But, it's what the angel said to do. Also, it did give a fairly accurate whole picture of what Isabel is like most of the time.

The woman asked me questions like, "Does Isabel dress herself?" I wanted to counter with, "DOES she or CAN she?" because that really depends on what she's had for breakfast, how much sleep she's had, what type of clothing you're asking her to put on, and how focused she is that morning. She cannot work buttons or zippers. She CAN dress herself, in part, sometimes. But, most of the time, she won't. Instead of going into all that, I just said, "NO." I found out that they really do write down every single thing you say so they can use it against you. The less information you give them, the better.

Hopefully, Isabel will get the help through Medicaid and DDD. It'll take about five weeks for them to make a decision. If she doesn't qualify for Medicaid, then Shane and I will have to take a serious look at getting Isabel SOME of the therapy she needs, instead of making our house payment. If this happens then I really don't know what we'll do about Cale. I'm trying hard not to go there yet. Keep us in your thoughts and prayers.

Valentine's Day

What happens to the marriage of a family with autistic kids? It changes everything, I can tell you that. Disillusionment. A long hard look at what we thought would be versus what is actually taking place. Grief. We've actually needed, and been through, counseling for the first time for this one. The loss of a dream, and a coming to terms with a wildly different reality. Eventual acceptance I suppose. I keep hearing that. These things are simple in concept. But, it's a real live process in motion. An unfolding of the unknown.

In honor of Valentine's Day, my husband and I got into an argument over who should do the dishes. It made me wonder if God's sole purpose is to turn me into a person that can't be irritated by anything.

Shane and I have always lived with a fundamental difference between us. It's always been there and we've always both known about it. We both want drastically different things with equal intensity. He really wants to experience the whole world, meeting as many different kinds of people as possible. I really want to move to some small town, stay there for the rest of my life, and get to know the people of that town as well as the back of my own hand.

Shane likes to have lots of surface friendships, letting very few people in where it counts. I like to have a few close friendships, disregarding everyone else. In fact, I'd really like to lock my closest friends up in a little shoe box and keep them close to me at all times, rarely, if ever, letting them out of where it counts. Now stop it. You won't fit into a shoe box.

Happily for everyone, something sort of in between has happened. We live in a city of five million people. Not another country AND not a small town. You could say that neither of us are full-filling our dreams. That is true from one angle. It's a good thing God doesn't limit anything to one angle.

Things definitely aren't going the way Shane thought they would go. Obviously, the burdens of having special needs kids are partly to blame. When Shane went to Thunderbird, he had this dream of joining the foreign service and working over seas some day. However, the Autism resources in say...Nigeria, are quite possibly lacking these days. Phoenix is the number one city in the country to live in if you have autistic kids. The resources here are top notch. It looks like we may be in Phoenix for a very long time. And Phoenix was never anywhere near the top hundred places we wanted to visit someday, let alone live.

Shane's plan included international business, with emphasis on the word international. His intention was to use his languages and see (and better) the world. Instead, he works in a cubical with no windows, doing tedious detail work on the world's slowest projects.

His job goes something like this: Shane changes a detail, vice president reviews the change, corrects him, Shane changes the detail again, vice president reviews it again, corrects him again, etc. Once the detail is approved, it goes before a committee, who corrects it, then sends it back to Shane, who changes the detail again, vice president reviews the change, corrects him, Shane changes the detail again, etc. Once the detail is approved again, it goes before the committee again, who corrects it again, then sends it back to Shane, who changes the detail again, etc.

This job only requires one language. English. It has nothing to do with foreign countries, nor will it ever, and I'm quite certain that it is not what my husband had in mind when he wrote his letter of application for Thunderbird. Now, I should mention, that we are grateful for the job. It provides everything we need, and he loves the people he works with. So it wouldn't be right for me to say he's unhappy there. It just wasn't what he thought would happen.

I too, look around sometimes, and wonder what happened to my plan. I've never, ever had ANY interest, what-so-ever, in learning about Autism. Now, I'm having to not only learn about it, I'm having to create and implement make-shift, in-home therapies for two autistic kids, do research I'm not particularly interested in, keep them from harming themselves, plan special diets, find professionals (good ones), apply for state assistance, attend I.E.P.'s, find alternative therapies, fill out endless piles of paperwork, etc.

This is all on top of the other countless duties that come with being a regular stay-at-home mom. It's my full-time job, and it was only supposed to be that for a little while. Now, I'm facing the possibility of this being my full-time job forever. Not until they're eighteen. No. There's a good possibility that it will be forever.

Back when Shane and I had lots of time, extra money, trips to Paris, turn-of-the-century houses to restore, and lived in a place we loved, it was easy to be happy. We had five fun filled years of these things before we had kids. We had a lot of really good, happy distractions. We could do what we wanted, when we wanted, and we've always had a lot of things in common that we really enjoy. Come to find out, there was just one little piece of the puzzle missing. Others. It was all about us, and only us. It was a self-centered relationship.

It's easy to be happy when things are going our way. But, our true colors come out when things aren't going our way, don't they? When it's not easy, and it's not fun. This is the test of personal integrity, so I suppose it makes sense that it's also the test of the integrity of a relationship.

What's left when the dreams don't come true? When there are no more happy distractions, and nothing seems fun or easy? Do I still treat him like I love him? Can I still treat him well? Will I fight him, trying to get what I can out of him OR will I support him through this time, trying to help meet his needs? Can I be a real partner? Can I accept him for who and what he really is, and not what I think he should be? Can I really? And, of course, the BIG one: Do I want to be right OR do I want to be happy? I know I can't change him to fit what I think I need (nor would it be healthy if I could), so is it possible for me to change me (the only one I really have any power over) to fit the relationship?

The survival of our relationship doesn't necessarily depend on my being able to answer these questions in a particular way. It does, however, depend on my consistent asking them of myself. My personal answer to all of these questions, by the way is, "sometimes." Alas, I'm still a human being, trying to live up to spiritual ideals.

I can tell you that our current circumstances have brought out our true colors. Some of Shane's colors are prettier than mine. Some of mine are prettier than his. But, you know what? I don't think I'd change things. Not because it's so good. It's not. It's scary right now. But, if we weren't in the midst our current circumstances, we might still have a self-centered relationship. We wouldn't have our kids. We wouldn't have our newest friends. We probably wouldn't even have kept our old friends (distance has saved, nourished, and strengthened a couple of my oldest friendships). We wouldn't be who we are now, and we certainly wouldn't know each other like we do now.

I do admire Shane. I know it seems like I say that a lot, but I do. I just can't get over it. I mean, here's a man who has had every dream he's ever had (everything he's worked so hard for), shattered. The idea of International anything might just be over forever. He might be in that cubicle for the rest of his life so that his kids are taken care of. And you know what he's doing right now? He's laughing. He's on the phone, helping someone else. Isn't that amazing? There are others. And they're in where it counts. And somehow, this feels more valuable and more real than time, money, dreams, etc.

I've grown a little also. I can no longer ignore the many because there are too many to be able to ignore! And I can no longer possessively love only a few because there are more than a few that I want to love. So, my new plan is to try to possessively love everyone. And I love that!

What a deal. Through the darkness comes the light, in every area of my life.

Fundamental difference worked out? I kind of doubt it. Shane has a way of adapting his dream. Who knows. Maybe we'll pack up Cale, once he's all grown up, and all move to a small town Nigeria. God's pulled crazier things than that in our lives. If we do go, I'll take my little box of friends with me. Luckily, for you, that little box is my laptop.

Surrender

I hate to leave you with the un-loveliness of yesterday's post, so let me tell you what happened after I got done writing it. I was feeling miserable. Obviously. And when I am miserable, I tend to look for answers outside of myself. This is good and bad. It's bad because, sometimes, the answer is really inside of me and my actions and I just can't cut through the crap enough to see it. It's good because, when I cannot see through the garbage inside of myself, then the answers WILL come from an outside source until I'm ready, once again, to see the truth. It's all good. Inside or out. God places the answers wherever we can see them.

I met with a group of people last night. I didn't want to go. I wanted to stay home and feel sorry for myself about having to feed my daughter poison for the next five days. But, I went anyways, and one of the topics discussed was surrender. And I thought, "Yeah. Yeah. I get it. Surrender to the action of feeding my daughter food that will make her sick for the next few days. It's GOD'S WILL, and God wonders why he's constantly questioned...," the sarcasm just oozed out of every pore of my skin.

Then, it became my turn to talk, and I remembered something that I hadn't thought about in years. I talked about when I first quit drinking and the 'one day at a time' surrender that process required. I talked about a wedding that I didn't go to, which was held at a church camp I used to go to. Everyone was going to be there. Now, keep in mind, there's really no way for me to explain how I felt about these people, or how I still feel about them. They were more than important to me. However, this particular church was okay with alcohol, so I knew there would be drinking at this wedding even though it was at the camp. I had just stopped drinking and I just couldn't see how it would be possible to get through it sober. It just about killed me, but I had to surrender it. I didn't go.

I didn't go into much detail about it last night because, frankly, a lot of these people were strangers and I didn't feel comfortable. That's a very odd reaction for me because, generally speaking, my life is open book. I just don't care to hide much stuff anymore. So, it's usually all hanging out there for anyone to see and I don't mind. The only time I hide something is if something's WRONG with it.

On my way home, I got thinking about it. I began to question whether the decision to not go to the wedding was actually a surrender, OR if it was just plain, old-fashioned, self-centeredness. It just didn't sound right. I surrendered the wedding of a girl I grew up with, avoided friends that had been very important friends, and sacrificed being there for a moment in time that will never ever happen again. "Something's definitely wrong with that," I thought. That intrigued me, so I thought about it for a long time, and the answer dawned on me sometime around midnight. Missing the wedding was not the right decision.

You know what? As I go along, I don't know that I become less self-centered. I like to think I do, but I don't. All I do, is become more aware of the depth of my self-centeredness. This is why all this self-searching is so incredibly important right now. If I don't look at it, don't acknowledge it, then I'll never move past it.

It was selfish to not go. I thought I'd made a decision that saved me from drinking, but it was really a decision based on fear, based on myself, and that took no one else into consideration. I don't know that any of them actually noticed that I was gone, but that's not the point. I'll always know I was gone. Also, NO ONE would've held a gun to my head and poured beer down my throat. The 'not drinking' thing was my problem, not theirs. Furthermore, it set up a chain of events that allowed me to, systematically, cut these people out of my life one by one. Oh man...ugh. Self -searching sucks sometimes.

Life is not all about avoiding pain and discomfort. True surrender, sometimes, means doing something I don't want to do, just because it's the right thing to do. So, I'm feeding Isabel gluten today even though I really DON'T WANNA. It is painful and I don't know if it's the right decision or not. But, I do know that God knows what he's doing. He puts the answers where I can see them. Also, I'll always be able to say that I tried absolutely EVERYTHING to get Isabel help. And I know that's the right decision.

A Big Fat Lie

Why can't I see it happening WHILE it's happening? My tone of voice starts out light and cheery. Then, it changes and gets darker. I get hot and shaky, like someone's just cranked the thermostat, and I start repeating the information over and over again. Here's where I should do a spot check, but I don't. Pretty soon I'm talking a little louder, and then a little louder yet, until I'm practically yelling into the phone at some poor person who's just trying to do her job for the day. I want to cry and call her back and tell her I'm sorry and that it isn't her fault, that I'm just up against it again and can't get out. But I don't because I've forgotten her name in the midst of my tantrum, and I wouldn't know who to ask for. I'm also sure she wouldn't care about my fear. She deals with scared moms all day every day.

This must be practice. Practice for treating people well, even when my emotions are on high alert. I must need A LOT of practice in this area. I wonder, sometimes, why it has to be such a fight. I'm to cease fighting anything or anyone. But I feel like I just fade away into the endless piles of paperwork he must have on his desk, and I'm not responded to. "Persistence does not mean fighting," I keep telling myself.

There should be no darkness in my voice. Do I want to be a person with darkness in my voice? There should be no change in the temperature, and certainly no shaking and yelling. Am I a grown up or not? I certainly didn't sound like one a minute ago. A simple, "Can I call you right back after I collect myself?" would probably be appropriate. But then, of course, I'd get someone completely different the next time I called, and I'd have to explain the entire situation ALL over again. More practice. "Call him back every fifteen minutes, calmly and politely asking for the documentation, and he'll get it done for you," my husband's words are swollen in my head. It is so much easier said than done.

The developmental pediatrician that won't call me back regarding current documentation on Isabel's last evaluation, just had his receptionist call to check and see if I'd gotten her to a feeding therapist yet. I've been trying to get a hold of this man for three weeks! I told the receptionist, AGAIN, that I need documentation of WHY she needs to see a feeding therapist so I can give it to the Medicaid medical investigator when they come next week. Once she has the Medicaid (if she's approved), then I will be able to take her to ALL of the therapists she needs to see. But I cannot do this without medical documentation of her condition.

Feeding therapy. Yeah. Stick it on the freakin' list.

And why is it that the school district cannot seem to complete an entire school week? Between PTC days and Presidents' Day, Isabel and Cale will be home for the next five days in a row. Alden has a 10am release tomorrow and the next day, and then has Monday off. Why go to school for two hours? My kids have had at least one, sometimes two, days off a week for like the last three weeks straight. Do you suppose that's why Arizona is ranked 50th in the nation for education? Because, the kids never complete a full week of school? Okay, I'd better stop that. I'm just venting now.

Isabel will see the neuro-psychologist on Monday and Tuesday and then the Medicaid medical investigator comes on Wednesday morning. So, she has to eat gluten (wheat) and casein (dairy products) from now until next Wednesday so that the psychologist and the medical investigator can both see what Isabel is really like. This is where the real fear is coming from. This is my DDD case worker's advice, which I will reluctantly follow.

I wish I could explain what Isabel is like on gluten. The words "small demon" are really inadequate, but they're the only ones that spring to mind. It hurts her tummy. Bad. And they don't have school. So, for the next five days, they'll all be at home with me. Alden will be neglected and play his DS for hours on end, Cale will systematically trash everything in my house while I follow him around and try to keep him from hurting himself, and Isabel will cry and bang her head on the floor. I just can't wait. And that's not even the bad part.

When I told Isabel that she'd need to eat wheat for awhile, she looked me in the eyes and said, "No Mom. I don't eat wheat." She won't either. Not on purpose. She knows it makes her sick. She asks me, point blank, about any questionable food, "Does this have wheat?" and if I say, "Yes" then she won't touch it. Not even a cookie. I'm going to have to lie. I'm going to have to look into her sweet little face, those big trusting green eyes, and say, "No honey...eat up," knowing it'll make her sick. And she's going to get sick. And she's going to know that she can't trust her mom. Have you ever had to look your child in the eyes and lie? It sucks. It just absolutely sucks.

Update on the kids

So, enough about ME! This is what's going on with the kids.

Where we're at in the battle with the state for Isabel is that we've RE-applied for DDD services (we applied before and they turned her down because of the wording in the developmental pediatrician's report). DDD stands for Division of Developmental Disabilities. Through them, children can get speech therapy, physical therapy, occupational therapy, and some respite care for their Autism.

Upon applying for DDD one is required to apply for Federal Medicaid Long Term Care irregardless of income. If the child is in immediate danger of being institutionalized then they'll give you the Medicaid and DDD will find and begin appropriate therapies. If the child is too healthy (based on the doctor's report AND the evaluation done by the Medicaid medical investigator) and Medicaid says, "NO" then DDD won't provide any therapies or respite for the child (but they will tell you where to get therapy on your own). This is what has happened with Isabel.

The problem with this is that Shane's medical insurance through American Express (DON'T ever work there if you have a child with Autism) does not cover ANYthing for Autism or Developmental Delays. "How can this be? The state LAW is that insurance companies HAVE to cover therapies for Autism!" is the response I keep getting. Well, I've looked up the stupid law and HIGHLIGHTED the loophole. Self-funding it's insurance (and being a huge corporation) exempts them from the law AND they are taking full advantage of it. Shane begged them. They said, "No." And therapists won't see the child at all unless you have cash ($150. per session for ONE therapy session and she needs three different therapy sessions EVERY week. This adds up to about $1800. per month. And, I have TWO kids that need these so that's roughly $3600. per month that we'd need to come up with JUST for their therapies).

Obviously, Isabel has not been able to get any therapies or other help. The most immediate problem for her is that she has sensory processing problems due to the Autism. One of the ways this manifests is that most foods taste REALLY bad to her (you should see her reaction if I trick her into putting something new in her mouth). She won't eat ANY protein and has stopped growing as a result (I've resorted to putting raw eggs into fruit shakes, protein powders are full of weird diet stuff and are VERY expensive).

According to the doctor, she desperately needs these therapies so he said to RE-apply for DDD. For as concerned as he was during her last evaluation, he hasn't seemed bothered since. He has changed one word in his report. He also refuses to give me documentation of her current evaluation (the report is based on his first evaluation of her). Yes, I've called and called and called and asked and asked and begged. He won't. He's too busy. So I have to hope that the one word change in the report is sufficient enough for the Medicaid medical investigator to change his/her mind about Isabel's condition.

I've also JUST applied for DDD for Cale but I don't think he'll have problems qualifying. The medical investigator can just look at him and the state of my house and see that he IS in IMMEDIATE danger of being sold on E-bay.

The process of applying for DDD takes MONTHS. So, the one word in the doctor's report has cost Isabel about seven months worth of therapies and me my nerves. They say that you CAN reverse some of the effects of Autism through therapy if you do it early enough in the child's development. But NOTHING seems to be set up to provide kids with immediate care. It is taking ALL of my spiritual resources to KNOW that the help is out there (the possibility of REVERSING this) and I just can't get to it.

Children can get DDD services (if they qualify) with the report of a developmental pediatrician from ages 1-5 years old. By the age of 6, however, they need a report from a real clinical psychologist in order to get or keep their DDD services (the cost difference is huge). Isabel will be 6 years old in December. Because of the unresponsive nature of the developmental pediatrician, I'm taking her to see a neuro-psychologist now. She goes in next week for two full days of testing and observation. They will be able to tell me which parts of her brain aren't functioning and exactly what we need to do about it. This, hopefully, will be another mark on her side of the chalk board for the Medicaid medical investigator (if I can get the timing of all this to work out just right).

Incidentally, psychologists don't always bill insurance companies. They often times need ALL the money up front (about $3000.) and then will help try to get the insurance company to reimburse (we had to get the money from our family). If I can get this new report BEFORE the medical investigator comes (I haven't gotten a call from Medicaid to set up an appointment yet) then they shouldn't be able to argue with Isabel's condition.

The angel I spoke of earlier is my new DDD case worker. She is from Puerto Rico, and has such a thick accent that I have to be able to read her lips to understand her (if we're talking on the phone I'm screwed). She moved here to Phoenix because she has two autistic children herself and according to her, "This is the city to live in if you have a child with autism. The resources here are cutting edge, but you have to know how to work the system." She started to cry as she watched my children and then took a deep breath and went into a long, passionate, and very detailed, step by step plan of what to do. It's the FIRST time I've had ANY guidance on this stuff.

She said to take Isabel to this particular neuro-psychologist. We'd have to pay for it up front but that we could get reimbursement from our insurance company if it's labeled under Mental Health (instead of Autism). Apparently, no one with Medicaid will argue with this neuro-psychologist. She also told me to tell Medicaid to send this particular medical investigator to do Isabel's evaluation (she knows her). Medicaid fought me tooth and nail on this one but finally agreed because I have the right to choose who comes. "THEN," she said, "the day that the Medicaid medical investigator comes over, give Isabel a chocolate milkshake. This is poison for an autistic child and the person will see what Isabel is REALLY like." She told me that I live with Isabel in a pretend world. "You control her routine, you control her environment, and you control her diet (gluten (wheat) and casein (milk) free). In the REAL world, children eat wheat, they drink milk, and they don't necessarily live in a controlled environment. LET the Medicaid medical investigator SEE what she is REALLY like!"

So that's the plan. The the current scoop in the saga. DDD comes to see Cale Friday but it'll be another two months before the medical investigator comes. Nothing's fast. Isabel see the neuro-psychologist the 15th and 16th of this month. I'll write an update on Isabel's medical condition after that. Thanks for your support and prayers and thoughts and "good vibes." I love you guys.