All Done

Here I am again. Up worrying in the middle of the night. Shane is asleep because he has more faith than I do. The children are asleep because they don't know there's anything to need faith about.

I haven't desired to not feel in a great while. But I desire it now. "Just grow up," my head is telling me. But I have a child in my chest and she has twisted in the midst of her blood curdling tantrum. I hope I'm the only one that can hear her.

I've gone over the check list several times. Prayed? Check. Eaten? Check. Meeting? Check. But she's still there. She isn't a child that can be soothed with a sippy cup full of warm chocolate milk and a snuggie in the rocking chair. Or by soft singing voices, puppies, or complete adoration. Nothing will soothe this child. She must be ignored with the fierceness of an old English nanny.

Autism is technically brain damage. Actually, if I'm understanding it correctly, it's the nerves that communicate between certain brain tissues that are either damaged or didn't hook up right in the first place. It's physical, is my point, yet our insurance doesn't cover it. We've been waiting, for nine months now, for Medicaid to decide whether or not they'll help my kids. And they've just put it off for another five weeks. My daughter continues to lose weight and have uncontrollable tantrums and anxiety. She's banging her head again. Cale seems like he has a concrete block on his tongue. And they've never gotten treatment for their Autism.

Most of the parents I met at the Autism conference last weekend, have children who have been getting a variety of therapies since they were between one and three years old. Both the parents and the professionals INSIST that early intervention (BEFORE the age of five) "is absolutely essential for any real improvement." I guess that means it's too late for Isabel, and it's quickly approaching too late for Cale.

I'm furious with myself for listening to the doctor that pronounced Isabel "normal" at eighteen months old. It was obvious something was wrong, but I wanted to believe that nothing was wrong. Denial is a great producer of procrastination. That doctor told me what I wanted to hear and I let her. I didn't push for anything further until she was almost four years old.

If I'd taken her to someone else, gotten proper treatment back then, and learned about Autism, she'd have had a lot of help by now. We also would've caught it much sooner in Cale because we would have learned what to look for. They could've gotten help eons ago. And here I am blaming Medicaid's slowness. MY own slowness is the real villain here.

This fury has sent my heart into regular, painful palpitations. I've had these, oddly enough, for nine months now during which I've blamed the state for MY mistake. Or maybe it's just all the coffee I drink. I keep thinking that it surely must be more dramatic than caffeine addiction. As I told the doctor about my chest pain and anxiousness, I was holding a venti-Americano with cream which he looked at and said, "Chest pain and anxiousness huh? Is that...coffee?" It's a good thing he was dark and beautiful or I might've had words.

And my left eye twitches non-stop. It's kind of funny actually. When I'm talking to friends, I have to be careful to not look at them too hard lest I freak them out with my twitchy eye! Okay. I'll switch to green tea. Maybe that will make everything okay.

Maddening is a good word, but it's still not intense enough. I am so close. Here I can SEE all the help that's out there for Autism, but I cannot access that help for my children. It's worse than maddening. In fact, it makes me want to pull the skin off of my arms in long, jagged strips. I cannot continue to sit back and watch my children deteriorate.

So, I've made a decision that may dump chunks of our world onto the cereal coated floor. I'm done waiting for the state of Arizona. I'm done waiting for anyone. I am going to wave cash at the therapists, coaxing them into my home to take care of my children. The cash will go home with them. The house payment won't get made. Nor will the car payment or the student loans or the credit cards. With as much as these therapies cost, it will only be a matter of one month before we'll be unable to catch back up, and three before we are completely ruined.

But finally, my kids will get treatment for their Autism. And they'll get it NOW. We'll rob Peter to pay Paul, because Paul may give my kids a future. Everything else be damned.

Maybe we'll rent a house with a pool. I've always wanted a pool. Maybe I'll find mountains in the stucco of the garden wall and maybe I'll plant tall green plants. I'll make it my mountain lake and I'll swim when I can't sleep. The cold has never bothered me. I like to become one with water. That's sounds silly huh? I know I've succeeded when I'm floating softly and my body is so still I can no longer feel the water moving over my skin. And for just a moment, before I become me again, I become the water.

Okay. The little darling seems to have knocked herself out. I've weathered another internal storm. It's interesting about spiritual exercise. One can't always think their way out of an episode of it. It just comes, like a bad cold with it's congestion and head pain. And no matter how sweetly your head tells you it's not happening, it doesn't actually stop until you take action to heal it. I'll call the therapists first thing in the morning. Who cares about the stuff. I want healthy kids.

A Part Of

I am constantly blown away by this experience. "See the truth," I keep saying to myself, "That God is here and is as concerned with our human affairs as we are." That doesn't mean that he can (or should) make things go the way I think they should go. Nope. It just means that I'm a small part of a very big picture that I can't see all of with my tiny little perspective on things.

ALTCs (Arizona Long Term Care=Medicaid) has LOST all of the information from Isabel's interview. You know? The interview we prepared for. The one we put Isabel back on gluten (and made her very sick) for so that "they could see what Isabel is REALLY like." The one we went through HELL to prepare for and then finally did, spending two and a half hours answering grueling questions about every single detail of Isabel's functioning (during which Isabel sat under the table and cried). Then we waited five long weeks for the results (whether or not she'd get therapy), only to find out that they LOST it all.

Whoops. "Sorry Mrs. Spears, the information from the last interview isn't available to me. The paperwork has been LOST. We'll have to do it all over again. When is a good time for another interview?" This is a brand new person. I have to convince a brand new person of Isabel needs. Are they conspiring against Isabel so they don't have to come up with the money to help her? Or are they really just stupid? It's difficult to tell.

AND the ABA class we registered for, mysteriously shrunk. Suddenly, they cannot accommodate Shane and I during the month of April-May. We can try to get into the class again May-June. The only problem with May-June is that I HAVE NO HELP WITH MY OTHER TWO KIDS IN MAY-JUNE for two mornings a week for five weeks. And, no, we cannot ALL attend.

So, there went THAT chance. I am looking into other options. I feel like the universe is saying, "Oh...did you want to actually help your kids? Oh, well, good luck slamming your head into THAT brick wall."

You know? My kids have a CHANCE at becoming productive and self-supporting future citizens, IF they receive the therapies they need to achieve that end. And the younger they are when they receive those therapies, the more of a chance they'll have. Neither of them are currently getting therapy.

I know it doesn't seem like it should be the state's responsibility to help Autistic kids. It should be the parents. I agree completely. However, the average cost of raising one child with Autism is three and a half million dollars. We have two of them (so that would be $7 million for us).

Shane's income is good, but it's not THAT good. If I could get an ordinary daycare to take my kids, I could go work. But two of my kids have "special needs" which translates to "I'll have to pay more than I could make for "special" child care."

The two BASIC therapies (the bare minimum) that Isabel needs right now (speech and occupational) will cost our family about $1200. per month out of our own pocket. Even if we walked away from our house, we couldn't afford that. And even if we could make that work somehow, what about Cale? Cale needs more than two basic therapies.

The therapies either need to be affordable for the families OR companies shouldn't be able to pass these things off onto the tax payers. Unfortunately, neither of those is necessarily the reality. So, the burden (of us anyways) currently remains on the state. And I believe the states have two choices here.

The bottom line is that one out of every one hundred children are being born Autistic. That's not a small percentage. The states are frightened, and for good reason. We have to decide who we want to be in relationship to this. Do we want to end up with self-supporting Autistic adults OR do we want to end up with Autistic adults WE (the state) have to support? Because that will depend ENTIRELY on the actions we choose to take NOW. Do we want to help them now or do we want to take care of them later? I'm afraid those are the choices.

There's another thing to look at here. A more immediate concern for my own personal family. We always hear, "It takes a village to raise a child." Well, it takes THE WHOLE village to raise a child with Autism. And we have no family here most of the year. My in laws pop in and out of town. They have a daughter with two Autistic children in Montana and they have a son (Shane) with two Autistic children in Arizona. So they go back and forth, and frankly, I'm surprised they aren't living in, like...Zimbabwe by now.

It's quickly reaching the point where I alone cannot take proper care of my Cale. He is continuing to get bigger, but since he's not receiving therapy, he isn't getting better. In fact, he has stopped developing altogether. We're in the middle of the six month process of applying for state help for him too. But, you can see how this goes. We've been at it for Isabel for a year now to no avail.

He's getting so big. What happens when it gets to the point that I'm not strong enough to physically force him to do things? I wouldn't be able to bath him, dress him, or contain him. And if he doesn't get therapy in time, he may never be able to do any of these things for himself. So if HE can't do it and I can't do it, then these things won't get done. Then I become a neglectful careful even though I've been begging for help for months. I'm learning what I can on my own with "all the desperation of a drowning man" at this point. But still, he needs professional help.

Sometimes I can't keep him safe. I try really hard to. As long as I can get him to his room then I can lock him in there. Yes, I have a lock on the outside of his door and I lock him in. This I have to do anytime I want to take a shower or pay attention to something. Why? Well, because he has brain of a baby and the body of a big three and a half year old. And he will escape from the house if I'm not paying attention.

We accidentally left the door unlocked a few weeks ago. So, he opened it and ran away! He has no separation anxiety or safety awareness, so he just ran away! And I didn't notice right away (I have ANOTHER Autistic child that requires a lot of attention).

One of my neighbors found him in her yard and brought him back home to me (THANK YOU GOD!!!!). And I found myself thinking, "How can I do the things I'm learning to do, when I have TWO of them who need me AT THE SAME TIME?" My Autistic kids are VERY different from each other and both need very different things. It's not like I can "play" with BOTH of them together. Each of them REQUIRES a lot of one on one attention. And poor Alden. He rarely gets my attention.

Cale's lucky he didn't get hit by a car. So, should I leave him locked in his room every time I need to pay attention to Isabel or make dinner? And at what point does this type of thing become inappropriate? The good mother vs. bad mother thing went out the window a very long time ago. Now it's a matter of are my kids safe? And I do the best I can.

So, once Cale gets so big that I can't physically take care of him anymore, and a decent income isn't enough to get help with, then what? At what point will I be arrested for neglect? Will it be the next time he escapes? Maybe if he does get hit by a car or drowns in some one's pool? And how will Shane manage to work and care for Cale while I'm in jail (sitting on my duff reading books...hmmmm. I think I could fit in just fine in jail). Where am I going to find a VILLAGE?

All of this thinking has brought me to my knees. It's so dark. And it needs to stop. I could drown in these thoughts.

If it's true that God doesn't give us more than we can handle, then obviously he thinks I can handle this. Even if I don't. And what has occurred to me, once again, is that there is a big picture here that I can't see and that I am not in charge of. God has a glorious plan.

I keep saying to myself, "Be a joyous, active, and loving little atom in the body of the whole, doing MY part so that the body has a chance of being a joyous, active, and loving whole. All I can and should do is recognize that I'm an atom, and be a fantastic atom. I have to do MY ABSOLUTE best to do my little part to take care of the body, and let the others do their part (even if they suck at it).

I'll use the story of The Actor as an example. We are ALL in this huge play (raising our kids). And everyone has their part in the big production. I'm the actor (and ONLY the actor) and it's my job to perform my part with all the passion I can muster. It is NOT my job (or my business), however, to direct the whole play. Directing the play is the director's (God's) job.

Now, being an actor ( a mother), I do need some awareness of what the director is trying to do. I need to follow his guidance like my very breathing depends on it. And I have to act on that guidance.

I also need to let the stage hand take care of the stage (the developmental pediatrician and/or the psychologist), let the light guy take care of the lights (DDD and Medicaid and/or insurance company), let the ballet people take care of the ballet (therapists), let the scenery people take care of the scenery (the schools), and for God's SAKE, let the director be the director (let God be God). He's the one who has to get all these things to come together the right way.

The play has a CHANCE of being a huge hit, IF I do my part and let everyone else to theirs. I cannot possibly know how it should all go. But I can do my part with the hope of all the blue in the sky! I can act my glorious part with every bit of my being, with all of my love, and with all of my undivided attention. It's a gift straight from heaven itself, to be given such an opportunity.

So, I need to do MY part and DO IT WELL. I have to be a present actor and do all the footwork. I need to find out what the stage is like so I know how to dance. I need to know when and how the lights are coming on so I'll be able to see what I'm doing. I need to coordinate with the ballet and the scenery people so I know how, when, and where to do my part.

And once the show begins, I have to let the others DO their part, whether they do it well or not. And my judgment on whether or not they do it well, doesn't actually count for much in light of the whole play. Why should it? I can't SEE the play because I'm IN it. Only the director can SEE the whole play. So, I'd better keep looking to him for guidance.

Okay. So what if the stage hand is an idiot and waxes the floor at the wrong time (the doctor misses the Autism the first time through), causing me (and my kid) to slip and fall? Does that mean he's evil? Nope. It just means he's a human being and made a mistake. I don't even get the satisfaction of believing he's evil.

And, what if the light guy is kind of lazy and slow by nature (the state and insurance companies are so damn slow)? What if he forgets to turn on the light during an important scene, sending me twirling aimlessly through the dark until I (and my kids) fall again?

And what if the ballet tramples me while I'm down (the therapists charge so much money that if the insurance or Medicaid isn't in place it will break us fast)? What if, after this, the scenery people had missed a few bolts and a heavy piece of scenery falls on top of me (the school neglects something really important)?

What if I break a leg? Worse than that, what if I feel betrayed and neglected and uncared for (How could you not LOVE my kids!?)? Where will the passion come from then? How can I keep doing my part? What about my hope? What about my being, my love, my attention? How is that I could give my all, only to be dropped on my head?

What if I get really, REALLY hurt? Is it their fault? Maybe. Again, they are human beings that sometimes do the best they can, and sometimes don't.

So, do I blame the director? It's tempting. In fact, it's really tempting to fire the director and try to take over the whole play at this point. Because, obviously, no one can do their jobs and I'm (me AND my kids are) getting hurt! The director should've made sure the others did their jobs correctly! He should've seen this coming! He should've warned me at least! He should've taken care of me!! After all I am really hurt here, and he should've been doing his job better!

Well...he WAS doing his job PERFECTLY. And if everyone else had been doing theirs (if everyone in the play had always chosen God in every moment of every day throughout all of time, and had taken his guidance), the play would've been very different. It still probably wouldn't have been done MY way, but it would've been different. But people don't always follow the director's guidance. And the important thing for me to remember is that the director NEVER promised me a perfect play.

So do I get to blame the stage hand? The light guy? The ballet and the scenery people? Do I get to scream and yell and cuss and beat them up? I'd really kind of like to. But, honestly, what would that do for the play?

I do have some choices here. I can try to anticipate what will happen during the next show and be careful. But, if I'm spending all of my time trying to anticipate everything about the play, how will I pay attention to my acting? How will I do MY part well?

I can quit and leave the play, throwing away my part altogether. This is the ultimate act of selfishness and self-centeredness. It would leave the play without an actor (my kids without a mom). Hmm. Not an option for me.

I can always just try to see the truth. Maybe the stage hand had a fight with his wife and couldn't concentrate. Maybe there are things going on in the lives of all these people that only the director knows about, that are affecting their ability to do their parts. And maybe not. Maybe they really are just idiots.

In reality, it is probably a combination of things. Sometimes I'll get a good stage hand to work with, and sometimes I won't. Sometimes the ballet will be fantastic, and sometimes it won't be. And maybe my damage has taught them some things about the play, or about themselves. And maybe is hasn't. Maybe my hurting is for a reason and maybe it's not. I don't get to know because I'm just an actor. I'm one small part of the whole play. Only the director can SEE IT ALL.

So what am I going to do? Well, if I care about the play (which I do), then I have no choice but to act my part with a broken leg. The only thing that the director ever promised me is that he'll give me enough strength that I can keep on acting, even when it hurts a lot. Pain avoidance is NOT what it's all about.

I also know that the hurt probably won't last forever. This hurt will heal and then there will be another hurt in the future. And it will heal, then hurt, then heal, etc. And all along, the director will personally give me his strength. I can use all of this to become bitter OR I can use it to become wise and love with a love that isn't conditional on how I'm treated or on how I think the play is going.

Maybe I can use some of this hurt to do my part better OR maybe I can use the experience later on to help another actor with their hurting. Maybe HUGE gifts will blossom from the middle of all this hurt.

Maybe, in the end, I'll realize that the play was actually perfect all along. Maybe the director knew exactly what he was doing. Maybe everyone actually did exactly what they were supposed to do and I just couldn't see it that way. And maybe my hurting was a part of the perfection of it. Maybe the play just gets bigger and better, little by little, decade by decade, etc. And I get to be a part of it! I get to experience every second of it. Maybe THAT is what it is all about.

"Normal" Kids

Okay. You KNOW I have to talk about the kids I just babysat. They were fantastic.

I made friends with the mother of these children through Isabel's teacher last year. The daughter was in Isabel's developmental pre-school class, and her and Isabel have become best friends. This little girl has since been mainstreamed into a regular pre-school. She had speech delays last year, but doesn't anymore. In fact, she's talking circles around Isabel now. She just turned four years old last weekend, and is about where Isabel is at developmentally (Isabel's five and a half years old). So, she and Isabel play together really well.

They're sooo cute together. She is a full head shorter than Isabel and has the longest, blondest hair I've ever seen. She doesn't mind that Isabel is ALWAYS in her face and trying to hug her. She's so cute, she just wants to hug her. I really can't blame her. We have a lot of talks about personal space. But, this little girl doesn't help much with that. She loves to hug Isabel back right back.

They snuggle and hug and try to walk with their arms around each other, the sides of their faces pressed up against each others. Isabel has to bend way over for this. It's so funny. Isabel says, over and over again "I love you. I looovvveee you..." And this little girl just says it back, "I love you too Isabel." And when Isabel screams suddenly and comes unglued over a toy not fitting into another one, or WHATEVER she decides to come unglued over, this little girl just looks at her funny and ignores the tantrum. After it's over, she goes back to playing with her like nothing ever happened. Bless, bless, bless her little heart.

Every time she talked to me today, it surprised me. She's so little, about the size of Cale, yet she talks in full sentences. "I'm hungry. Can I have some oatmeal?" she asked and I startled a little bit. She continued, "My mom said that the other kids can have some of my oatmeal too. My mom brought one, two, three, four, five oatmeals. It has apples. It's apples oatmeal. Yumm."

Isabel said, "Oooh yeah! Apples oatsmeals! Yumm!" Isabel HATES oatmeal.

When I babysit these two, the little brother is the one who really fascinates me. I think it's because he's a full year and a half younger than Cale and he's not REAL verbal yet, but communicates very well regardless. One time, when he had a dirty diaper, I watched him go over to his bag and pull out a diaper and some wipes. Then he brought them over, set them on my lap, and said, "Uhh. Uhh." "Holy crap!!" I said out loud. He was only 18 months old then.

Cale takes off his own diaper and spreads everything all over the walls, the carpeting, and all of his stuff, rather than let me know he needs changed. All the carpet cleaner in the world isn't going to bring his carpeting back. In "normal" children this means they're ready to be potty trained. In Autistic children, well unfortunately, they need SOME motivation to communicate before potty training can be effective. I know. I've tried to potty train him over and over and over and over again.

Now the little brother is two years old and when they got here today, he looked at Cale and smiled and said, "Hello." Cale didn't acknowledge him at all. Later on, I asked him if he'd like some water and he said, "Yeah. Wit ice an a traw." I almost fell over backwards! I'd pay BIG money just to get Cale to say, "Uhh. Uhh."

I watched this child eat an entire bowl of oatmeal (OATMEAL!!) and a small container of applesauce (APPLESAUCE!!), all without getting one drop on himself. My son does unholy things with oatmeal and applesauce. If fact, he's banned from anything that spreads like shampoo in his hair because that's where his food goes (over his head). Then he rubs it all around.

Cale gets DRY foods because I can sweep them off the floor instead of hanging a screaming three and a half year old over the kitchen sink, one more time, to wash his freakin' hair for the fifth time that day. It's getting to the point where I'm not strong enough, physically, to wrestle with Cale. It just breaks my back. I don't know what we'll do when he gets even bigger. I guess we'll either feed him nothing but dry cereal OR we'll let the oatmeal solidify in his hair.

Cale spent forty five minutes in the high chair today because he wouldn't say, "up." I know he can say it. He's said it several times this week, in context. But, today he wouldn't say it. So, he sat there. He might not realize this, but his mother is more strong willed than he is. Now that I know he can do it, the game is over. If I have to leave him in that damn chair for the rest of his life, I'll do it.

This child's GOING to learn to communicate if it kills me. ABA here we come! SARRC (Southwest Autism Research and Resource Center) says they can help me teach him to communicate and that will help the screaming and all the frustration a lot. I don't know about that. Isabel can communicate and she still screams and breaks things ALL the time. But, I've got to try it. I really have no doubt that if I made Cale say, "eat" before I fed him, he'd starve to death in that chair. We'll start the class on April 13th.

Sometimes, when I'm around "normal" children, it feels like someone is tapping on my heart with a hammer. Like it might be punctured at any moment. But, at the same time, I love it. Or, I should say, I love them. It's the oddest sensation. I can't take my eyes off of them. They are so fascinating to me that it hurts. They're so little, yet they talk.

I heard a story one time about a woman who, after the death of her child, described having, "gobbling mother eyes" when she saw children. This is kind of how I feel when I see "normal" children. I know it just ooozes with self-pity, but sometimes I feel like a spoiled little girl who says to God, "How come all my friends got them and I didn't?! It's NOT fair." And of course God says, "You're children are perfect Jessica."

"Normal" kids can communicate effectively. God I get jealous about that. They have real live little emotions that are sort of these uncontrolled, slightly less sophisticated versions of our own adult emotions. If they aren't hungry, angry, lonely, or tired (HALT - you know where I got that from), then only the tiniest bit of guidance is required to have a very happy child. It's absolutely fascinating. Alden was this way when he was real little, but I took it for granted then.

My secret wish is to have one more "normal" baby. One that would grow into a "normal" child and be able to look me in the eyes, talk to me, caress my hair, and sing old church camp songs to me. Alden did these things when he was real little. He still does them today sometimes. I don't take it for granted any more though. I savor it like cheesecake on a Sunday afternoon.

I'd love one more child. But, alas, I don't trust our genes. After having one Autistic child, it is TWENTY TIMES more likely that the next one will not only be Autistic as well, but will have more severe Autism than the previous child. Yeah. No shit. That's how people end up with six Autistic kids in a row. By the time they realize the first is, it's too late. I'd never survive another one. My tubes have been physically slashed, burned, clamped, and cauterized. They've also been mentally kicked, crushed, stomped on, and completely destroyed. And I'm seriously considering having Shane get a vasectomy too, just in case.

I found an old e-mail that I sent Shane when he was in China (years ago, when Alden was 18 months old and Isabel was 6 months old). In this e-mail I told him all the words Alden started saying while he was away. At 18 months old Alden was saying Grandma, Grandpa, daddy, pretty, help, diaper, swim, bug, breakus, munch, and dinno. He was saying muk (milk), water, drink, blankie, book, coffee, puppy, and medcin (medicine). He could count to ten, and could sign a bunch of words.

I also talked about how Alden was starting to really try to initiate communication. My exact words were, "I think the signing helps him to slow down and isolate concepts. Then he concentrates more on how to say it...He's becoming more interested in using communication rather than crying!!" I recently watched a home video of Alden (from when he was around 18 months old, Isabel had just been born). In the video he says, "Mama, I'n pooopy. Pooopy. Mama, pooopy."

Wow. Cale's words are "Maamamama," and "up." Yup. That's it. And Cale is TWO YEARS older than Alden was then. I don't mean to compare him to other children, but honestly, how can I help it? How will I ever keep track of where my children are at developmentally if I don't have normal children around to compare them to?

And how will THEY ever have a chance at learning what it means to be a child, if they're never around "normal" children? I know it hurts. I know it's painful to witness, especially when it's plain to see that they're SOOO far behind "normal" kids. And some "normal" children aren't as kind as these two little ones I watched today. But IT IS NECESSARY for Autistic kids to be around normal kids.

I'll tell you this. I can (with therapy) teach my kids to communicate (hopefully). I can read to them. I can teach them about pictures, colors, shapes, letters, and numbers. I can help them to learn all their academics. All the school work that can help them succeed in life. But I cannot teach them how to let go be a child. Not really. Because I'm an adult.

I can't teach them about the joy of running fast through sand, laughing hard, to get to the slide. Of digging holes with their bare hands. Of wiggling and giggling at nothing in particular. Or, the exhilaration of hiding under a bed, hoping to not get "seeked" right away. Of being goofy, laughing at poop jokes, impulsively stomping a puddle. I can't teach them to be as silly as only a child can be. I can try, but "normal" children will be much more effective at teaching them HOW to be CHILDREN.

I know it's tempting to hide them away. To keep them safe, at home, and try to keep the world out. To try to teach them "social skills" ourselves. To not let them be harmed by the possible cruelty of other kids (and adults), by the world not seeming friendly, and by their own differences. But, to hide them away because of my own discomfort at watching them struggle, my own jealousy, my own insecurities, and my own mother bear instincts, is just plain old fashioned selfishness.

Get Autistic kids to play with "normal" children AT ANY GIVEN OPPORTUNITY. I had someone say to me, recently, that there are NOT a lot of people who are willing to do the work to be a friend when you have special needs kids. I do find that to be true. There really aren't many, but there's always someone.

When I was growing up, my only sibling was Autistic. Of course, they really didn't know much about high-functioning Autism back then. He had severe delays in speech, cognition, and social skills. He had years of speech therapy and was always in special education classrooms. My parents sort of blamed the speech delays on me because I talked for him for the first five years of his life. I watch Alden do this with Isabel now. My brother still lacks social skills to some extent. He was never formally diagnosed, but after having my kids and learning all I've learned, I can see it clear as a bell.

When I first found out that Isabel was Autistic, I asked God why on Earth he would give ME and Autistic child. "I know NOTHING about what to do with Autism, God. Why me?" And I swear what I heard was, "Honey, you know exactly what to do with Autism. You've had Autism around you your whole life. You just didn't call it that." And my brother popped into my mind.

We were always pretty isolated socially. We had ONE family that we ever spent any real time with (they had five kids in this family) when we were growing up. When we had birthday parties, these kids were always the only ones there. Never was there friends from school. Nope. JUST this family. God BLESS them for this. But, I remember asking my mom once why we didn't have any other friends. And she told me that it was because these kids were the only kids that were nice to my brother.

The only other place my brother made real friends was at the church camp I always go on about. Can you blame me for going on? You see? God will always make sure there's someone.

When I do find children that will play with my kids, it doesn't matter if they're years younger, where they're at developmentally, or how painful it is for me. I let them play. They have A LOT to learn from "normal" children. Yes, they NEED a lot of guidance and help with this. And, yes, they will be hurt. They'll be tortured and laughed at and stared at and made fun of. But, they might make a friend. Yeah. And that's worth taking major risks for.

Addendum: My friend just sent me a copy of this poem. It's actually one I've heard about and have been looking for! It's pertinent to this post, so here it is. Thanks hon!! Love you!

WELCOME TO HOLLAND I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this… When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy. But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. Written by Emily Perl Kingsley

Strength

You know? God seems like a big jerk sometimes. Doesn't he? He's not real IN to instant gratification like I am. He is however, IN to us taking the lemon and doing something helpful with it. And not just making lemonade. Not just making the best of something that breaks me in half, but something better. Something that might actually help somebody else.

This is a quote from an e-mail I just received from a mother who lives in Georgia. She's talking about vaccinations right here, but gets side tracked by her feelings. This is what she says:

"....after having parented a child with autism, I'd rather have my child DIE OF POLIO, MUMPS, or MEASLES than have to parent another child with autism. IT IS THE WORST THING THAT CAN EVER HAPPEN TO A FAMILY. At least when your child is diagnosed with cancer, people line the block waiting to bring you casseroles...with autism, they run the other way. You are socially isolated. You can't be a normal parent and enjoy your child. It's like having someone stab you a thousand times a day EVERY DAY in the back."

Bless her heart. I can relate to the social isolation thing. I really can. It isn't even really explainable. I wish it was. I wish I could write about it, describing it in detail. This always turns a negative into a positive for me. But, the social isolation cannot ever really be explained in a way that does it justice. It cannot be turned into something positive. Now, I'm pretty lucky in this area. I have you guys. The beautiful women that read my blog, not because you necessarily have Autistic kids, but because you love me. Bless every one of you for your encouragement on this.

Anyways, back to the social isolation. How do I describe it? It is unbelievably lonely to have Autistic kids. You can't go to the park or to the store alone with them. You can't go camping, fishing, hiking, skiing, swimming, or out to eat. You can't go on a bike ride. You can't send them to normal summer camps. You can't go to the gym and work out. You can't even really go to someone else's house and be comfortable. If you do have people over to your house, you have to make sure that your children don't hurt their children. Other parents quickly sense this and sometimes won't return. Of course, I don't know if it's really that or the constant screaming at my house that keeps them from coming back. Hmm.

Anyways, you really cannot do any of the normal things a family should be able to do. Why not? It's hard to explain. The bottom line is, it's just too damn hard. Not only is it socially humiliating, but it can be life threatening for the kids.

For example, Cale runs right out into the street EVERY chance he gets. He bolts for ANY body of water he sees. He has no fear and no separation anxiety. He just runs away as fast as he can. And three year old kids can run fast. He also has no sense of safety awareness. He'd jump straight into water and drown in a flash (we just had that experience with a small lake at the park we took him to this morning). He's like a giant toddler that never grows up.  Now maybe if we just had him we could go do some things.  But we have Isabel too.

Isabel has no stranger danger. NONE. She'd instantly hop into the car of any creep who offered her a hug. She wouldn't even need candy to tempt her. A hug would work just fine. Hairy? Greasy? Child-molesting sleeze bag? No problem! She loves everyone.

These examples don't even really scratch the surface. The bottom line is that we just don't take them anywhere unless both Shane and I can go. And when the two of us do take them someplace, it is absolutely exhausting. It takes both of our constant attention just to manage Isabel and Cale. And, as a result, Alden is often neglected. We get stared at and glared at a lot. We get told our children are misbehaving. It doesn't matter where we are (we can be at the library), Isabel and Cale scream suddenly and for no apparent reason, and don't necessarily stop.

It's no fun. We don't get to visit, we get to chase. We don't get to play, we get to chase. We don't get to relax, we get to chase. We don't get to enjoy, we get to chase. And when the screaming begins there is no shutting it down so we have to be prepared to drop anything we might be doing and leave. And when we finally get everyone back home alive, we usually pass out from exhaustion. It's soooo much easier to just stay home in the first place.

Well, that was a small but fairy good description of some of the reasons for the social isolation. I think every parent has probably experienced all of this at some level. You really don't get to do any of these things if you have a toddler. But, toddlers grow up quickly.

We've lived like this for six and a half years now and there is no end in sight. I think the fact that IT NEVER ENDS is the excruciating part. It's kind of like the Arizona heat. In June, everyone is fairly good natured and optimistic about the summer. By the end of September, however, everyone is just pissed. You can tell what month it is by the behavior of the traffic. It's the fact that it's over 105 degrees (every minute of every day and night) for nearly four months straight, that drives people over the edge.

It's impossible to really understand it if you haven't experienced it. I always have people argue with me on this. "Please come camping for a weekend with us! We'll help with the kids." And we say, "We can't. We'd lose Cale in the woods, unless we wrestled with him every minute of the trip to get him to stay near us. It wouldn't be fun at all." People say they'll help but once we get there, they don't know how to make him stay any more than we do.  I suppose we could put him on a dog leash and listen to him scream all weekend. Hmmm. No. That probably wouldn't be right. Well? When you have to live with a wild animal, you start to consider things you wouldn't ordinarily.

A common one is, "Why don't you take them over to the public pool in the summer? There's a great play area with sprinklers and everything." And I say (one more time), "Because one would drown while I watched the other get sprinkled." And there is no doubt about that. Both Isabel and Cale bolt for the deep end of any pool, at any given opportunity. And neither of them respond at all to, "STOP!!!!" I only have two eyes and two arms and I can only run so fast (and then the first would drown as I ran away to save the other).  And the whole situation would leave Alden unattended completely.

Anyways, back to the e-mail. Upon hearing a bit of this woman's story, I've come to realize that Autism isn't just hard for us. It's hard for other families as well. And God gives me strength NOT by handing me a mountain lake (my will - what I think I need), but through my attempting to help others. And whether or not the "others" are actually helped, is none of my business. It's through the trying to help that I get my strength.

One of the ways I do this already, of course, is that I blog about my personal experiences with Autism. As you've probably noticed, I don't sugar coat it. This is very important for me. Instead, I talk a lot about my own experiences and feelings because it helps me to identify them and work through them.

I don't (at least not yet) write much about what my children are going through because, honestly, I don't know what they're going through. Cale, for example, doesn't communicate with me in any way at all. Someone asked me the other day if he likes his pre-school. "I don't know," I responded. And that's the truth. I know he's three and a half year old. He should be able to communicate in some way. But, he doesn't. I have no idea what he goes through at school.  He can't tell me.

My kindergartner can tell me about his day. Even Isabel, to some extent, can tell me about her day. Cale. Nope. I have no idea. As I figure out what they think and feel, I'll write about it. But, so far, I've been focusing on what the family goes through. I do this because it's what I needed when I started this whole process. And I find it very soothing to try to give away what I most need. The giving fills the hole that's created by the needing.

From now on, as I learn new information about what helps Autistic kids, I will attempt to put it all into words. Some of these concepts are hard to understand so I will try to put the information into everyday language for regular people. I will also probably always lace these blogs with how I feel about everything. It's just in my nature.

When I started this process, I went to look for books on the subject of Autism. I needed to know about the process a family with an Autistic child goes through. I didn't even know where to begin. There was so much information from the doctors, and no real order to any of it. I need a "do this and then do that" type of plan. I never did find one. And, I'm afraid, those don't really exist.

The reason that they don't exist is because every one's experience is so different. The first step for us was to get a diagnosis. One can do this through a developmental pediatrician (if the child is between 0-6 years old) and most insurance companies will cover this. With this diagnosis you can get state help for a 0-6 year old. If the child is six years old or older then you'll need a diagnosis from a licensed clinical psychologist in order to get state help (not cheap, but very thorough, insurance will usually cover if it is coded under MENTAL HEALTH). A little tip - check for and understand what type of psychologist you're seeing.

These doctor's (the developmental ped. and/or the psychologist) will tell you what specific therapies your child needs. The biggies are speech therapy, occupational therapy, and physical therapy. Most Autistic kids need all three. There's also music therapy, animal therapy, horse therapy, etc., etc., etc., and everyone and their dog seems to be trying to make money off of Autism. Get those therapies later if you want, but focus on getting the ones the child really needs first.  I don't mean to sound negative about any of these therapies, but a family really can break themselves financially trying to get their kid "this therapy" and "that therapy."  There's always some new trend so get the basics first based on what the doctor's say, and then get the others if you want to try new things and if you can afford them.  It took me a long time to realize that I'm not a bad parent because I can't try EVERY new thing that comes along.


Some insurance companies cover speech, occupational, and physical therapy, but some don't. Either way apply for state help.  It's always worth a try.  If the state deems that your child needs the help, then they'll cover therapies and medical care for the child (either working with your insurance company to cover any remaining balances, or covering ALL of it if your insurance company won't cover any of it).

Next was to apply for state help. Find the state's equivalent of Division of Developmental Disabilities (it will be called something slightly different in each state). Through them a family will apply for medicaid for their Autistic child (regardless of income). Some may think they don't need state help. Well, the cost of raising one child with Autism is about three and a half MILLION dollars. Yeah. Anyone with an Autistic child needs state help. Jenny McCarthy got state help for her Autistic son.

When a person applies, they need to make the child sound worse then he/she really is. Parents NEED to hear this part. The reason for this is because the child IS worse than the parents think he/she is.  Think about it this way - just take your Autistic child to the park and compare them to a normal child.  See?  That is along the lines of what the state will do.  These are not the people to try and make your child look good for.  A parent always tends to see the good. But, if the state thinks they can get away with not helping, then they will. If they think the child doesn't need the help then they won't give it. Here's the secret though. EVERY Autistic child NEEDS the help to have a chance at becoming a happy and self-supporting adult some day.

Finally, look to find the experiences of others. ALWAYS pray for guidance. Yeah. I said pray. Not to sound like a bully, but if a person has an Autistic child then they'd better make peace with God right now.

I've seen a ton of books titled something like: My Johny, A Very Special Boy. The problem with these stories is that they are mostly about Johny. Not Johny's mother. And I guarantee that what you want is Johny's MOTHER'S experience. Actually, what you want is the experiences of Johny's, Ted's, Nicole's, Buffy's, and Blow Joes's mothers. This is because there is no other person in the world like Johny. Just because Johny has seizures and my child doesn't, does not mean my child is not Autistic. The fact that my child doesn't seem A THING like Johny DOES NOT MEAN MY CHILD IS NOT AUTISTIC. You see, when I read about Johny it deepened my denial.

The behavior of Autistic kids varies so much. No two Autistic children are ever the same. Nor will any Autistic child have the same experiences as another Autistic child. There is however, a basic process that the family (including their Autistic child) has to go through to get help.  And unfortunately, even these experiences  will be different for everyone.  There's no cookie cutter answer.  What's needed badly are the personal experiences of the families. Especially, the mothers. They are who told me what to do. And that is what I'm trying to provide here.

Shane has just registered us to take a class through the Southwest Autism Resource and Research Center. It's a JUMP START class that we will both need to attend, two mornings a week for four weeks. Ouch. This is going to cut into the sick days big time (No. Of course the company won't help him with this).

This class will cost us another $500 that we don't have (will have to put it on a credit card). It's a class that will teach us about Autism and give us training in ABA (Applied Behavioral Analysis) and how to apply it within our home. Do you know what ABA is? In a nut shell, it is behavior modification. And it is not always pretty, but the research shows real, consistent results for Autistic children.

You see, my Cale won't talk. He won't even TRY to talk. And it's not because he's an idiot. Its because he's Autistic. The key word here is "WON'T" not "CAN'T." It's going to be very hard for Cale to learn to talk, so he doesn't want to. ABA encourages an Autistic person to talk (and helps with other things too, like potty training). It breaks communication tasks into small, manageable parts and uses cognitive dissonance. Do you know what cognitive dissonance is? It's creating just enough discomfort for a person to becoming willing to do something different than he/she has always done before.

An example of it in a kindergarten class would be - everyone else can read the word "is" and the teacher is going to be asking us to read it out loud in front of the class tomorrow.  I guess I'd better learn how to read the word "is."  In ABA it looks like - I won't get that piece of candy or toy or whatever it is I want, until I at least try to say it, nor will they let me avoid.  They'll take over anything I try to get my hands on until I try to ask for it back.

ABA is a behavioral approach, and some sort of behavior therapy is often necessary for an Autistic person who is non-verbal, if they are ever going to learn to communicate. Because it's not just verbal skills that are in jeopardy here. It's the fact that Cale won't learn how to communicate in ANY way unless he's forced to.  He's a stubborn little thing.  He may never learn verbal skills, but we do need to teach him to communicate somehow.

So, as they were describing what we'd be doing in this class, I couldn't stop crying. What I know so far is that Shane and I will be in one room. They'll take Cale into another room and implement the therapy with him while they teach us how to implement the therapy in the first room. (I'll have to explain behavior modification in my next blog. I'm too tired tonight). Then, after while, we'll watch them do the therapy with Cale through a T.V. set. I tear up instantly at the thought of this. Not only will I get to see him NOT be able to perform the most basic of tasks (which is ALWAYS so much bigger to me when other people can see it), but I'll have to watch them make him cry.  Maybe by telling you about it, I can keep some strength.

Differences

"Happiness does not come from the kind of table a family sits around but from the interaction that takes place at that table." - Jacqueline Kramer

I have had gender differences on my mind for the last couple of days. Why? Two reasons. One is that I've been angry with my husband this week. And two, I'm bored out of my freakin' mind. Not physically. Physically I have thousands of things to do. I haven't touched a load of laundry in a week so there are NO clean socks. The kitchen floor is COVERED in food because my three and a half year old son just sent his lunch on a miniature airplane ride through the kitchen air. And, we're having people over tomorrow night.

I'm actually bored mentally. If I have to even LOOK at a sock, I'm going to send my own lunch on a miniature airplane ride. So, I'm looking through books, finding interesting quotes (one of my FAVORITE pastimes) and I found this one.

Now, this is a beautiful quote. It's also incredibly interesting. It's lovely and we all get it, but I want you to notice just one little thing. It was written by a mother.

Shane and I had a heated "conversation" the other day. For some time now, I have been unable to figure out why he doesn't seem to take our children's Autism as personally as I do. Not that it doesn't affect him. It does. He just doesn't seem to take it personally. That's because he's a father. He does try, really hard sometimes, to make the interaction at the table a good one. But, the issue doesn't reach into the core of his being and take chunks out of the very heart of who and what he thinks he is. As a mother, it does mine.

What sits at the core of Shane's ego, regarding our family, is his ability to provide for us. And not JUST to provide, but to provide everything he thinks we want. He thinks it's his job to provide the kind of table his family wants to sit at. This, for a father, sits at the very heart of what it means to be a man. Really, ladies. It really does. If it weren't for women wanting in door plumbing and warm beds, men would probably still be living in caves.

Right now, my husband is having to come to terms the fact that he can't provide enough to get our kids the medical attention they need (and some other things for the kids too, spring break and summer camps for Autistic kids are REALLY expensive). He knows I want these things for the kids. And my wanting something and him not being able to provide it...well...this he takes personally.

He can't possibly provide it all. It's just too damn much. This isn't because of his ambitions, it's because we live in a country where therapy is ridiculously expensive and big companies get away with not helping their employees. And, it might be because I want too much.

His insurance doesn't cover ANYTHING (not even in part) for Autism or developmental delays, nor can we afford the $4,000. per month (per child) that it would cost to get our kids the therapy they need out of our own pocket. He's reacted to all this in a variety of little ways. He gets worried about money. And, for good reason. I guess they'll stay at home with me next week for spring break. Yippee.

Now, I should probably mention that Shane is really familiar with the concepts I'm talking about here. He knows that the whole of who he is, isn't REALLY about his ability to provide everything we want. But, knowing it and experiencing it are two different things. Right now, he's experiencing it. And, I have to admit, he's doing it with a lot of grace and dignity.

When a man thinks he's providing everything the family wants, then everything is okay. Everyone should be happy. Right? He thinks so.

However, when he has fear in this area...well...it's bad. Some men have fears of success (I'll just never be able to provide enough) and become a bit bum-ish. Some have fears of failure and drive themselves to the top of the financial heap. Some waver back and forth between their dreams and what they think is reality, afraid to move toward their dream lest something goes wrong and there's no dinner on the table tonight. The table matters. It matters a lot. It's the manifestation of a man's ego, his very being.

Now, I don't really "get" that. I understand it intellectually, but not by experience. Still, it really isn't something to be taken lightly. I know this sounds odd, but I think it might just be the crux of the medical problems most often experienced by men. It's a big deal.

The ability of a man to be able to provide what his family wants (the kind of table) should be treated as nothing less than the ability of a woman to make sure her kids are okay (that the interaction at the table is good). Not that they need to make a bunch of money (nor do we need to have kids). They don't. Remember I said it's his EGO. Sometimes a man has to lose everything to realize that his ability to provide what OTHERS want (or not) IS NOT who he really is. And sometimes a woman has to have sick kids in order to realize that her ability to make everything okay for them (or not) IS NOT who she really is.

When my children are not okay (and they may not be after I've been stuck in the house with them all of next week), it rips at the very fabric of who and what I think I am. MY ego. I take it personally. Very personally.

I am a mother. I should be able to make my children okay! I should be able to make SURE that the interaction at the table is good! Shouldn't I? With Autistic kids though, the interaction isn't always good. And, when I can't make it good it means I'm a bad mom. A BAD mom. And this cuts to the very core of my being. Then, self will takes over (I need to read more books, do more research, why haven't I gotten that speech therapy book yet? I gotta find out about ABA, and how to apply it! I really should be reading to them more, finding ways to feed them better, teaching Cale sign language! Why am I not more loving, more consistent, more present?!!!). And I suffer.

Then what happens is that I look at this man who wants to go over the budget one more time and I want to yell, "But the kids are not okay! How can I possibly give a shit about the budget? And how can you be more concerned about money than the kids?" And then he says, "But if the money isn't there, they won't eat, and YOU'LL be pissed." And what I've realized is that we are coming from two totally different places. From things that are based on our own fears. Our own egos. Who we think we are in relationship to our children and to our family.

He's talking about the table. I'm talking about the interaction at the table. Both of them matter. But, neither of them encompass everything.

You know? I've always thought that the "Women are from Venus, Men are from Mars" crap was a whole lot of hogwash. Really! "Just say it like you mean it," I'd say, "and there won't be communication problems. Just be a sensitive and loving human being and we'll be fine." The problem is that sensitive and loving, to me, looks like drama over the kids, like roses and endless "I love and appreciate you"s, like tons of "I know how you FEEL and I AGREE with you completely."

Well, he does say it like he means it (Jesus Christ does he ever!). It's just that he's coming from an entirely different angle, a whole different place then I am. He IS a sensitive and loving human being. He makes sure my tires are full, that the oil's been changed, that he goes to work, that the battery is changed on my computer mouse, and that there IS a budget. That's LOVE ladies. Just in case you didn't recognize it. He loves me. And that's all I really want to know anyways. Incidentally, I sometimes hear him crying in Cale's room at night. He does take it a little bit personally.

Okay. The socks look better to me now. Maybe I should take a loving action and fold them.

Acceptance

I saw a posting on the bulletin board at Starbucks a while back. It was an add for a 'mothers of Autistic kids' club. I grabbed it and read it once I got to my car.

The women on the cover had big smiling faces and, of course, there were no pictures of their children. It boasted a catchy phrase that went something like this, "The doctors recommend institutions, we're pushing for Harvard instead!!" These women, it went on to say, don't talk about Autism. They speak only of their children's strengths. Yeah. That's actually what it said. Like Autism is, somehow, a weakness. A "way of being" that needs to be hidden or entirely ignored.

I had to go to the office of the developmental pediatrician a few weeks ago to pick up some documentation regarding Isabel's "feeding disorder" which is happening as a result of her Autism. We had to wait in the waiting room for a few minutes while they got the paperwork ready. Waiting there, also, was this women and her daughter.

The daughter was about six years old (just a year older than Isabel) and it became clear to me, after just a few minutes, that her daughter was Autistic as well. She was sooo cute with her brown curly hair, little glasses, and little pink polo shirt. And she had that Autistic smile that says, "I don't know appropriate facial expressions, so I'm just going to smile this perfect smile showing exactly what I'm feeling!"

She couldn't sit still so she got up and began following an invisible line around in a circle. I couldn't help but smile, the familiarity of it just tickled me. Its kind of like seeing another new born right after you've had a baby, only more intense. I wanted to say to the mother, "We have something so special in common here!" but I didn't, because at the moment her daughter started to "become obvious" the mother immediately intervened, "Sit down sweetie."

It was then that I looked the mother in the eyes and saw that look. It's a very painful look to witness in another human being and I think it might only be visible to other mothers who have, at some point, had that look themselves. "The Look" has only one word to describe it. Unacceptance.

The daughter didn't sit, of course. She slowed down a little, but kept following the invisible line. Isabel saw the line too and smiled big. She joined the little girl, who seemed delighted that someone else could see the line.

Together, they walked around in a circle giggling, smiling at each other, flapping their hands, and following the non-existent line. I hoped that by seeing the girls together, the mother would spot the similarities and lighten up a bit. I almost said, "There's no need to pretend around us. We love Autistic kids in our family," but, I didn't want to offend her. I tend to get too personal too quickly. I did want to get their phone number though. It can be very lonely to have kids that no one "gets," so to encounter someone in a natural way like this seemed like a priceless opportunity.

I kept trying to start a conversation, asking the mother how many children she had, how old they are, and what part of town they live in. She answered my questions, one at a time, without taking her eyes off of her daughter. Occasionally she would try to distract the daughter into doing something else, "Look at the teddy bear, sweetie!" and "What color is that rug?" They, of course, WEREN'T going to be distracted. There was a line on the floor for Pete's sake. This was obviously her first Autistic child.

She was never able to acquire any curiosity about us and seemed intent on making sure her daughter didn't look too Autistic. After she finally lost her temper and got her daughter to sit down, we all played a forced and incredibly controlled game of I Spy. This was painful for me, but it eased her up. Everyone looked 'normal'. About then, the receptionist brought me my paperwork and they were called out of the waiting room. Isabel said, "good-bye" to her new friend and we left.

I thought about it all the way home. The ability to strike up conversations with strangers is NOT among my strengths. In fact, I really suck at it. I could hear my friend Gaaby's voice, "Why didn't you just say, "Look. We obviously both have autistic kids. Want to be friends?""

"Because," I said out loud, "she would've thought I was a freak!"

"So?" my imaginary Gaaby said, "If that's the worst thing that could've happened, then why didn't you?"

Then all the excuses started. I feel sorry for that little girl. What a beautiful little girl, and her mother doesn't accept her for who she is! Isn't that sad? I can't surround myself with people like that. Why can't she just let her be herself? Then it hit me. I know why. Ughh...I know exactly why. It isn't JUST about whether or not other people notice the Autism. Its also about the Autism being painful for ME to see. And coming to see it as a beautiful thing has taken me a long time. I still slip up sometimes.

When we were in Montana last December for Christmas, we went over to some friends' house for a day of talking and playing and catching up. Isabel fell in love with one of my friends and wouldn't leave him alone. She kept getting right up in his face, waving at him and talking to him. I kept saying, "Isabel, give him some space. Isabel! Space!" He finally looked me in the eyes. His eyes were saying, "Back off Jess," but what came out of his mouth was, "I don't mind."

I too, have to be reminded to let my kids be themselves and to love them for exactly who and what they are.

You know? I'm awfully worried about being judged by other mothers. And, I'm awfully worried about people judging my kids. And here I am judging another mother, not accepting her because SHE'S not accepting. I'm "a pot calling the kettle black."

I not only have to accept my kids for exactly who and what they are, but I'm also going to need to learn to accept and respect other mothers, for wherever they are at in the process. And not deny my child a possible friendship because of my closed heart.

Geez! There are so many lessons in this deal. What a gift. I still don't think I can join that mom's club though. Ewe.

No Matter What

Okay. Okay. Okay. I've said the word, "Okay," about six hundred times this morning. It's almost as though I've had to force myself to agree. I think that maybe if I say "Okay" enough times, it will somehow become okay. I feel like the boy that's "whistling in the dark" past the graveyard to keep his spirits up.

It's one thing to know, roughly, what's going on with my kid. It's another to have a seventeen page document detailing what's going on with my kid, plus ANOTHER eighteen page long document full of recommended interventions.

"Overwhelmed" understates, significantly, what I'm feeling right now.

There are two different types of diagnosis for Autism, which was confusing as hell to me when I began this whole process. Now, it seems very simple. I like to compare it to buying shoes.

First, there's the lumpy and uncomfortable Faded Glory (Wal-Mart) version. It costs around $325. and consists of taking the child to a developmental pediatrician. This person will watch the child for half hour, or so, and then say, "Yup. You've got an Autistic kid. I'll write that down on a sheet of paper for you. Good luck and have a nice day."

Then, there's the unmistakable Prada version. It costs thousands of dollars more than the Faded Glory version, and consists of taking the child to a licensed (it's important to check for the license) clinical psychologist. This person will run every test known to man-kind and then give you a document that tells you, in excruciating detail, more information than anyone should ever know about anyone. This, of course, is the one you need if you actually expect to be able to help your child.

We've just received the Prada version. And I have to admit, it doesn't FEEL nearly as good as a pair of Prada shoes would feel on my feet right now. It's going to take me a while to read and understand everything the report says. So, it's sort of hard for me to report the findings here. But, I'm going to try.

Basically, Isabel's two biggest problems are her language delays (both receptive and expressive) AND her "inhibitory control difficulties." These problems are seriously inhibiting her current development. She is performing below age level across all pre-academic subjects. Her over all I.Q. is slightly below normal range, however, her language delays are keeping her from being able to demonstrate her true capabilities.

Intensive speech therapy (if we can find a way to pay for it) will address her language delays. Speech therapy is a must and, apparently, the speech therapy she's receiving at school is NOT nearly intensive enough for her. We have to pray, hard, that she'll be able to get speech therapy through DDD.

The "inhibitory control difficulties" are mainly to do with the Autism. If I'm understanding it correctly, Isabel has some structural abnormalities in the frontal lobes of her brain. Because of this, she will always struggle with being able to control her emotions and her behavior. She will probably always be impulsive, have attention difficulties, have anxiety and other strong emotional reactivity, and struggle to learn and implement appropriate social behavior. She would benefit from psycho-therapy and (God forbid) may need medication to be able to get through school.

This is where I cried, right there in front of the neuro-psychologist. I wanted to say, "You means she's ALWAYS going to have this anxiety? You can't fix that?" But, I didn't because I think, deep down, I already knew that.

I just have to wonder if it's my fault. A mother always wonders if it's her fault. Structural differences in the brain? That means that something interfered with brain development, which happens in the womb.

There was that one time I got the flu when I was eight months pregnant with her. I took a spoonful of baking soda to calm my stomach and this dehydrated me so badly that I ended up in the hospital. Remember that? By the time I got to the hospital, the amniotic fluid around Isabel was almost completely gone and I almost went into labor. They pumped me full of water again and kept me over night. By the next day, everything was okay. Supposedly.

I've read that Autism might be caused by viruses contracted during pregnancy, by diet, by various toxins, by vaccines. There's all kinds of theories. But, I've also read that Autism is genetic and that it has to come from both sides (mother AND father). We both have Autism in our families. Shane has a lot of it on his side. And, I really think my brother has high-functioning Autism. Considering that I have two Autistic kids, the 'genetic' explanation makes the most sense to me so far.

I remember having an ultra-sound when I was first pregnant with Isabel. I was about twelve weeks along, so she was about the size of the end of my thumb. The ultra-sound took about twenty minutes and during the entire time she was on the monitor, she was jumping up and down. It was the same exact jump every time. Up and down. Up and down. Up and down...for the entire twenty minutes.

It was the most peculiar thing I'd ever seen and I asked the ultra-sound lady if it was normal for a fetus to jump up and down like that. She didn't really answer me. Isabel still, to this day, jumps up and down. When I'm getting her dressed, I have to be careful she doesn't hit me in the chin. She just jumps, suddenly, for no apparent reason! I've had a black and blue chin countless times from this. Do you suppose she could've been Autistic already at twelve weeks?

You know? A person could drown in these questions. It's like anything else. The more times you ask the question, the more different opinions you get. And the more opinions you get, the less the information seems to make sense. The bottom line is that they really don't have a freakin' clue why kids are Autistic. They just are.

We took Alden, Isabel, and Cale to the birthday party of one of Alden's friends at the park this afternoon. The moment we walked up, someone looked at Cale and said, "Hi!" so, he screamed this blood curdling, high pitched, long lasting scream. Everyone cringed. I kind of wanted to say, "Well, here we are! You know we've arrived when the screaming begins," but, I refrained. I want so badly for Alden to have a somewhat normal child hood. We won't be able to avoid birthday parties.

Shane took Cale and played at the play ground while the rest of us participated in the birthday party. Isabel cried and whined during each and every party game because she didn't understand how to play. She cried after every single game she didn't win. And, she cried every time she didn't get a prize. She didn't want to pop the balloons or hit the pinata, choosing instead to sit on my lap and cry. Then, she cried and whined because she didn't have presents to open, because she couldn't eat the cake, and because, well, it all just kind of sucked for her.

And, it looks like that's just what Isabel's life is going to be like.

This, for me, is powerlessness at it's highest level. I'll never be able to make the world okay for her. All I can do is sift through this report and try to understand everything. Then, try to pick a few of these recommended interventions and get them for her somehow. It's one foot in front of the other. One thing at a time. I have to trust that God loves Isabel as much as I do. All I can do is the footwork, leaving the final results up to him.

Maybe she'll be miserable for the rest of her life. Maybe, one day, I'll be able to teach her that she doesn't have to be miserable, EVER, no matter what's going on. What an absolute gift that would be, huh? And maybe, I'll get to tell her that it was HER that taught ME that. She's a beautiful child, my Isabel. And, it's gonna be okay.