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.

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.