All things beautiful

Well, never mind.

2006-09-28T08:05:00.000-04:00

OK, so we are doing the EEG. With all the therapies and evaluations, poor Jeremy is worried something is wrong with his brain. I've told him a hundred times there isn't, but he wants proof, I guess. Once he was assured that the EEG was not going to suck out his brain, he asked if he could go ahead with it. If it will put his mind at ease, I'll do it.

His PT eval was yesterday and went well. He has loose joints and hypotonia (which has been running through my head since yesterday, to the tune of the Ramones "Psychotherapy" and is a fancy way of saying low muscle tone), both things he won't outgrow. The joints are the way they are and he'll always be floppy. The muscle tone can be improved with strengthening exercises. He isn't severely delayed, and the PT thinks it will be a relatively short course of treatment, followed by some stuff we can continue at home. Jeremy really got along great with the PT, Jason, and I think they'll work well together.

So the EEG tomorrow, and then I think, maybe, we'll be done with tests and evaluations for that one. Finally.

Not gonna do it

2006-09-19T16:50:00.000-04:00

I am not going ahead with the EEG for Jeremy. I'm not ruling it out for the future but right now, no.

It's all in your head

2006-09-18T20:48:00.000-04:00

Jeremy has his EEG next Friday. I'm still unsure about this. I really don't think he has anything to worry about as far as seizures, but what if he does, and I don't find out? And if there is something going on, then what? And how will I get all that sticky goop out of his hair? Will the whole thing freak him out? I've explained it as much as I can, but who knows how he'll be when we get there. I think this is the right thing to do, but I'm nervous about it for some reason. OK from a clinical standpoint, it's probably the right thing. But from a Jeremy standpoint...I just don't know.

His PT eval is next Wednesday, with Jason, who I've heard great things about. At least that's some good news.

Please leave a message after the beep

2006-09-14T07:35:00.000-04:00

Sebastian had his CAPD eval yesterday. Wasn't much to it, just a hearing test and then a series of beeps he had to identify, words to repeat and sentences to decipher. The results should be in by the end of next week and the audiologist is sending me a copy to take to the developmental ped. when we go next month.

Not much to report other than that.

Like being low...

2006-09-08T14:35:00.000-04:00

Jeremy took his bike to his OT appointment this week...he did really well, but his therapist realized,as Jeremy was trying to pedal, that his muscle tone is really low. We knew it was low, but not to the extent that it is. His poor little legs get so worn out so easily. So now we have a call in to the pediatrician for a referral for a physical therapy eval. It will be at the same place he goes for OT, and we know the people there; this referral business is just a pain in the ass. If we didn't have to mess with that I could have set something up two days ago, but as it is now I have to wait for the doctor to do it. And they're good about doing things like that, it's just...I hate waiting.

Speaking of waiting, I wish I could somehow move Sebastian's appointment up to like, I dunno, half an hour from now would be good. I realized that while his tantrums and bad behavior have gotten worse over the past year or so, his overall development seems to have gotten stuck at about the level of a 3 or 4-year-old. Like he just never got beyond that age in some ways. I want somebody who knows this stuff to say:

This is what's going on with him.
This is how you can fix it.
Poof, it's done.

Yeah, I know. But it's different with him... see, Jeremy is a normal 8-year-old cognitively. Above average, really. He understands what you'd expect a kid that age to understand. Sebastian just doesn't get a lot of things...like why he has to change his clothes...why, if his feet are caked in mud, he needs a shower...a million other things...and that is horribly frustrating. I'm not going to lie and pretend to be this perfect person-this shit is hard. It makes me angry when my ten-year-old can't wash his hands as well as his five-year-old sister can. It makes me angry when I tell all the kids to wash up and get clean clothes on so we can go out, and when we get to the car, everyone is clean but him, and there he is in a torn and filthy shirt, and his face covered--yes, covered, this is not some pissed-off mama hyperbole here--in ketchup and crumbs. It makes me angry when I have to ask him at least a dozen times to take the trash out, and then it only gets done after he's thrown the trash can down, gotten trash all over the floor, screamed and ran out of the house at least once. It drives me crazy when I've just told him 'We leave on vacation in a month' and he squints his eyes up and goes 'Aren't we going on vacation in a month?' I know he heard me, why doesn't he get it?

Yes, I am a horrible mother. I want him fixed. He isn't quirky or a little weird, he is slow and ill-behaved and the slow thing I think is the worst for me. I'll just say it-I don't want my child to be like those dim-witted backward happy-to-be-mediocre relatives of his. I am supposed to be brilliant, in many ways-why can't I open up my head and accept this one as he is? I hate it for him-I hate it with every little rebel genius bone in my body. I love this child. I LOVE him in a fierce, posessive, primal way. This child is mine, why do I have to give him over to the genes he got from the other side, the genes that will make him be like them? I want a magic cure that suddenly pulls out my baby's crazy, supernerd Fox genes and thrusts those others into the background, quivering and hiding in the dark till they disappear. I don't want him to struggle. I don't want him to be struggling to do work that his brothers, two years younger, find easy.

I need that doctor to assess his development and tell me where he is and what's going on with him, so that I can go from there and find ways to make it easier for him to learn, and make sure that all his gifts are brought to the surface. He is beautiful and sweet and I'll be damned if I'll let that be squashed because he can't figure out how to get the bag out of the trash can.

I love this boy.

When is it too much?

2006-09-01T05:05:00.000-04:00

So I'm still really unsure about this genetics thing...I guess one of the things they want to test for is Fragile X, and many of the (widely varied) symptoms fit Sebastian, and to a lesser degree, Jeremy too...but then it also looks like a dozen different things, too. Fragile X can cause autism and a lot of things Sebastian has going on (crossed eyes, hand flapping when he's excited, several other things) and it's definitely a genetic thing, so I think it would be good to know if they do have it...but when do you say Enough is enough?

Jeremy had a lot of bloodwork done about a year ago, to rule out any physical cause for his symptoms, and I'm not sure if they tested for Fragile X or not. I should hear back from the doctor today about that. If they did, then I think I'm done with the genetics stuff for him. I need to have Sebastian evaluated, I know that, to find out why he acts the way he does. I know he isn't like a typical ten-year-old emotionally or intellectually, but I don't know how many of his behaviors are due to processing deficits or chemical imbalances, and how many are just him acting that way because he feels like it. I don't want him to be in trouble if he can't control the behavior, but I don't want to let it go if he can. So an evaluation is definitely needed and I do know that the developmental pediatrician is the right person to see for that. But beyond that, with the genetic stuff and all...I guess I just have to wait and see what the developmental ped. finds next month.

sigh

2006-08-29T07:40:00.000-04:00

Well, Sebastian was supposed to have his CAPD eval yesterday. I was a little nervous when they called to confirm the appointment and it was with a different doctor than they originally said, but I've seen scheduling conflicts come up, so I didn't think much about it. So yesterday, we drive 20 minutes to the doctors office, wait another 20 minutes, get back there and the nurse says 'OK, you're just here for a basic hearing test, right?'

'Noooo...it's a CAPD eval.'

'Oh! Really?' she says, 'Well, we had you down for a hearing test, so we don't have enough time to do the CAPD thing. We're just gonna have to go ahead and reschedule you, OK?'

Sure, fine, yeah, cause gas is cheap and I have all the time in the world. And it's fun to watch my kid get all freaked out over going to the doctor, really. Can we come back tomorrow too, and waste some more gas?

So what choice do we have? We go back and try and reschedule. The first thing they have is more than two weeks away. The audiologist comes back and says 'Oh yeah, you know they lost a bunch of appointments in the computer last week and I know they tried to restore some of them; I bet it just got messed up then.' Would it not make sense to call the patients and try and get the appointments put back in right, rather than just making a guess? I know it wasn't simply put into the computer wrong, as the nurse said, because I verified when I made the appointment that is was for a CAPD eval, and they told me what would happen at the appointment and how long it would take.

And then, they ask me if I have a co-pay on my insurance for this visit. Um...NO, not for driving all the way down here and spending nearly an hour doing something I could have just as easily done over the phone...you people should be paying me, you're the ones who screwed up.

Good grief.

They also wanted to know, since he's homeschooled, where he would get the services he would get if he was in school, since he's not in school.

WHAT? OK, now I think my hearing needs checked because that did not make sense.

Deep breath. I don't know where he would get those services, because he has never had services in school, which is what I just told you, and I don't know what services are offered in the schools, because he DOESN'T GO THERE AND WHEN HE DID HE NEVER HAD SERVICES THERE!

I'm not thrilled about taking Sebastian back to this place, but thanks to his insurance, we don't have much choice. And the insurance is a whole other thing I have to straighten out today...I lost his card but I had the one from last year, so when the receptionist called to verify thay he was covered, the insurance person said he was, but his current card expires at the end of the month. He is supposed to be covered from Jan 1 06-Jan 1 07, I have gotten nothing in the mail about coverage ending, I have all the other kids' cards that show that they're covered till the end of the year...

Meanwhile he's still seeing this therapist his ped. referred him to; he's a nice guy but I don't see what help it's doing. Sebastian isn't getting any better and I really think he has some developmental problems. Talk therapy isn't going to help that. So when I call the insurance company about his card and coverage, I need to check and make sure they'll cover him for any therapy he might need after the other evals he's having, or if I need to stop the thing he's doing now, because they only cover so many visits per year.

We leave on vacation in less than 6 weeks, and I am not going to think about doctors, or therapists, or bills or insurance or anything for an entire week. Can I just sleep till it's time to leave?

Get off this, and get on with it.

2006-08-26T06:10:00.000-04:00

I was talking to my mother about the whole thing with Jeremy the other day; we were discussing why I had wanted to find out what was going on with him, and the fact that I didn't think he needed to be 'fixed' or cured. She said something that made more sense than anything I'd heard in a long time.

'You want him to be happy, and to be as independent and able to care for himself as possible, right?'

'Yes, that's exactly what I want', I told her.

'Well, Sweetie, that's what we all want for our kids. That doesn't change because of a diagnosis.'

I love you, Mommy. What she said is so true. Our goals, our hopes for our children shouldn't change. If we say 'Oh, now he'll never be a doctor because he has autism', we aren't mourning the loss of his future-we're mourning the loss of what we think our children should be.

True, we may need to change the way we look at our goals for them. I had been quite worried about Jeremy's lack of friends and I realized, he isn't too worried about it. He likes to play with his best friend, Brody, but to Jeremy 'best friend' is defined as that kid he plays with when he's invited, or chases around at therapy. He doesn't pursue relationships, and that's OK. He's happy that way. My goal now isn't that he have friends-that's too narrow and constricting a wish. My goal is for him to be happy when he plays. If he comes to a point when he wants to pursue friendships, then I'll help him with that, but don't all kids need help? When Jeremy's twin wants to play with a friend, he doesn't just -poof!-magically have the kid appear. It involves me making call to the other kid's parents, setting up a good time for both of us, getting them to where they need to go...with Jeremy, it will just be a different way of helping; he'll need more coaching, to be taught how to interact a little better, but we teach our kids that anyway, don't we?

That little girl looks lonely, why don't you go see if she wants to swing?

Look, he has a sweater like yours. Why don't you go ask him to play tag.

Hi, this is Zac. He's a little shy, but he'd like to play trucks with you.

Who says that has to stop at a certain age? Why is it normal to teach kids math for 13 years in school, but if a kid needs taught social skills they aren't normal? Normal is vastly overrated, anyway. Think about this: when my kids took swimming lessons, a man asked why Jeremy always got in the water fully dressed, the implication of course being that there was something strange about that. The water was chilly, and this man's kid-like all the others, including three of mine-were shivering in their bathing suits. Jeremy's bopping around in the water, smiling like a maniac because his pants keep him warm. Now who made the most logical choice in that situation?

Yes, my kid is different. But he'd be different from yours anyway. And so what if he needs a little more help getting to where he's going? As parents, we're supposed to help our kids get there. If our daughters aren't popularity queens, if our sons don't wind up being CEOs of Fortune 500 companies before they're 30, we haven't failed. We've only failed if we haven't helped them be the very best versions of themselves that they can be.

If I lost my mind, would you help me find it?

2006-08-26T02:37:00.000-04:00

So here I sit in the middle of the night again. I was awake already when the dog started to bark, his chain tangled around and over and through his makeshift doghouse. I unclipped the chain from his collar, started unwinding the links, and the dog immediately went over the fence. Fifteen minutes later he was finished roaming the neighborhood and was parked in the next-door neighbor's front yard, barking his head off. Luckily, he came in when I opened the door...luckily for the neighbors, anyway. We still have the borrowed chihuahuas, and they started in as soon as Dexter came in. Sebastian was awake and watching the Disney Channel, anxious and alarmed as soon as the yapping and jumping started. No amount of reassurance will convince him that Dexter will not eat the smaller dogs, and so my options were as follows:

1: Go back to bed and try to sleep while the dogs go beserk and Sebastian cringes in terror and swats at the vicious chihuahuas

2: Chain the mutt back up so he doesn't escape again, and listen to him howl when he inevitably gets himself tangled again

3: Turn the mutt loose on the neighborhood and hope he either gets lost or shot (kidding, folks)

4: Stay up and keep the dogs under control, and make sure Dexter doesn't eat somebody's favorite toy

So. That explains why I'm up at 2:43 a.m., listening to Phil of the Future and compulsively searching online for books on Asperger's and websites with relevant info. I don't know why. I've read the books. I know what's up. I'm looking for something to explain the way Sebastian is, but what do you search for? 'Screams, hates himself and won't take out the trash'? How about 'Won't wash, flaps his hands like a maniac and is generally slow'? And then there's Dylan who needs to be checked out for so many reasons, not the least of which is because I'm tired of fighting with his dad over him. Something in my head clicked tonight, and all kinds of things suddenly made sense. From the time I found out Dylan was on the way, I knew he was going to be my responsibility. I hadn't counted on finding somebody who would actually want to be his father, and take care of him and love him not just when it's fun, but when it's awful too. Thirteen years later, I'm just now figuring out that that's exactly what I found? Talk about slow...and I know I've done this, so many times: taken it personally when Jackey had an issue with Dylan. If the other kids acted up I could say 'They get this from your side of the family', or think it anyway. With Dylan it was like, 'I made him this way, he must be like me, so you don't like me either.' Totally not a conscious thing, totally irrational, but hey, it's not like we choose how our heads are messed up. Another thing is, when he's acting like a 'normal' 14-year-old, I treat him like he is. He goes walking to his friend's house, rides all over the neighborhood on his skateboard, hangs out at the park behind the school. And then when he does something totally stupid or irresponsible or just plain disobedient (I must have dogs on the brain, still) then I think of all the ways he's different and try and explain the behavior away as Not His Fault. So if he can't be expected to remember to take out the trash, should I expect him to remember to wear his helmet when he's riding? If he has to be given very specific detailed instructions for what to do around the house, is it safe to send him off down the road, knowing there are all kinds of unexpected circumstances htat could come up between here and Tyler's house? Should I be letting this kid babysit? I've been really damn inconsistent with him, which hasn't helped anything. He's fine when it's just him and his dad, but throw me in there and it's war. I want Dylan evaluated so I'll know for sure how serious his 'issues' are (cause he has them, for sure) , and change how we-no, how I-treat him. Either he is a (mostly) typical teenager and should for sure get chewed out for walking right past the trash cans, knowing his job is to bring them back; or he has the problems I blame his misbehavior on, and needs a good bit more supervision and guidance than I give him. I suspect-looking through my newly opened eyes-that the problems are there, and we can teach him to remember the trash cans and to know how to behave in unexpected, unexplained situations.

And Sebastian...Sebastian has his auditory processing eval on Monday, which might tell us something. After that it's back to Dr. Sheppard in October. He is such a sweet boy with such a big heart, and I know that sometimes I should be easier on him. Honestly, sometimes when he's loud or just acting...well, dumb...I see so much of Jackey's family in him and I don't want him to be like them. What a horrible thing to say, and if the sun was out and I wasn't running on about 9 hours sleep over the past 3 days I may not have said it. But there it is. He whoops for no reason, and I see my father-in-law yelling drunk and unintelligible...he doesn't get something, and I think, I'm supposed to be a genius or something, how can my kid be like this? Sometimes he is so like that side of the family that I hardly feel he's mine, and that bothers me. Not that I love him any less, I just feel I don't know him as well as the other kids, sometimes. But he is beautiful and wonderful, and he is so smart in so many ways, and sensitive...he knows he is different (something Dyl and Jeremy seem to be largely unaware of) and tries so hard to be good sometimes, and just doesn't get it. He wants to help make dinner, so at 2 in the afternoon he assembles all the ingredients, all the cookware, everything, on the counter, leaving no room for anything else and cluttering the kitchen that was finally clean after who knows how many weeks of being simply passable. This afternoon at the grocery store, Zoey went toward the wrong door as we were leaving. Sebastian noticed immediately and screamed her name before the automatic doors even opened. She turned and laughed, realizing her mistake, and trotted over to us. There were maybe three feet between us and her, when he noticed her direction. It's a small store, no cars were driving in the lot, and Sebastian began to cry. He hugged her and told her he was glad she was safe. I had reached behind me for her hand just as he yelled at her, and I tried to explain to him that she wouldn't have made it to the door; I was watching her. Still, several hours later he came out of nowhere with a big hug and tears in his eyes, saying 'Mama, she could have gotten hurt or lost!' How sweet is it that he loves her so much? And sad, too, that he worries so. Dylan, on the other hand, had her with him once, getting her something from one of the vending machines while I took the groceries to the car. I didn't specifically tell him she was staying with him, but Zoey had asked me in front of him if she could stay with him. I said yes. They were talking to each other when I left the store. But, because I hadn't said 'Dylan, Zoey's with you. Hold her hand till you get to the car', he just let her leave the store ahead of him. His reasoning? 'I thought she was going with you.' That time, she could have gotten hurt. It was a busy store with a crazy parking lot, and lucikly I heard her little feet behind me. When I told Dylan she could have gotten run over, he acted like I was crazy: 'Oh, like the people driving can't see a little kid in the road, geez, she's not like an ant or something, it's not like they're driving big Sherman tanks and couldn't see her down there.' Right. OK.

I don't know what to do. Sleep would be nice, but I think that's out for yet another night. Research seems to be all I can do...looking for some explanation and from there, maybe answers.

Well, shit.

2006-08-24T03:44:00.000-04:00

I don't WANT to read 'A Parent's Guide to Asperger's Syndrome and High-functioning Autism'.

With the lights out, it's less dangerous...

2006-08-23T16:20:00.000-04:00

I'm babysitting three horny homosexual chihuahuas. My daughter's best friend is in love with both her and my son. One of my boys wears his hair in a mohawk and his underwear outside his pants. Two of my best friends are a couple of devout Christians.

When you put 'weird' in perspective, this autism thing is nothing.

If the sound of this, it frightens you, we could play it real cool, and act somewhat indifferent

2006-08-22T07:43:00.000-04:00

I had heard awful things about this doctor, and wonderful things about her. I feel bad for the people who had bad experiences, because she was good for us. She listened, paid attention to Jeremy, asked a lot of questions but never made it sound like there was something wrong with him.

Then she told me what I already knew, or suspected anyway.

She was asking me all about all these things and they weren't like Jeremy...no, he doesn't do that! Or that! No, he has a great imagination! Yes, he talks in a normal voice!

Maybe it isn't that. Maybe she's going to tell me-please, let her tell me-I worry too much. He's a little different but he doesn't have that.

But he does.

My son has autism. High-functioning autism, Asperger's Syndrome, PDD, pick your label, folks, they're all the same. Well, not really. Jeremy has Asperger's Syndrome which is...what? A less severe form of autism, I guess you'd say. He has no speech delay, in fact in that area he's always been above average. Same with his cognitive skills. The kid is brilliant. But he doesn't get the social thing. He's very literal. He will spin and spin and spin and not get dizzy.

He has autism.

I was prepared for this, had done research and felt that he probably had it. So why does it hurt so much to hear out loud what you already knew?

Because there is no going back now. There is no saying 'It might be...' or 'He kinda acts like...'

I was cool yesterday. I told the doctor I was glad to know; now when people look at my son funny, glare at him as he's lining up all the packs of gum in the checkout aisle or melting down because there's construction in the mall and the sound of hammering hurts him: 'Look, people, he has THIS. Here's what it is.' Yeah, if you can take the time to glare at my child, or to speak about his behavior because you don't know, I'll teach you. When you are done with me, you may be pissed, but you will know why this child acts this way. I was strong, in the doctor's office. I saw Jeremy's OT as we were leaving and I was less strong, then. She is a friend: 'What a nice surprise!' she said. I told her. She asked how I was. I told her I was going to go home, cry, throw up and then I'd be all right. She hugged me and I managed not to cry. She did too.

I didn't cry on the way home. Almost, but not quite. I didn't tell Jeremy's father. I ddn't tell the kids. I posted on the Yahoo group I'm part of, because I know my friends there will understand and I don't have to actually talk about it. And there, I didn't say much.

I made dinner. It was good. I folded laundry, gave Zac some cold medicine, called my brother. If talking to Bil didn't help, I need to keep quiet for a while. It didn't help.

So now it's morning, and I think it's OK. Sebastian goes to see this same doctor in October, and she wants to see Dylan too. We talked a little about the two older boys after I mentioned that Sebastian was going to be coming in, and she wants to send them to genetics since they all have something going on. I'm not sure about this. Will it involve needles? Dylan and Bash are terrified of them. Will I make them do it so that we can possibly learn how to help other kids? I don't know. I don't think so. If it turns out that the other boys have this same thing-and Dylan almost certainly does, and Sebastian has something going on-then I will be an invaluable resource to the children's center. They will educate me as much as possible and I will be a great addition to the Family Support Network, which I already joined. But I don't want this. Should we just disappear? Try Jeremy's OT at home? I don't want them to be Those Boys, us to be The Family With Three Autistic Boys. I just want them to be...not normal, but not different. Not different.

But they are, and they are wonderful and amazing, they are as perfect today as they were yesterday, Jeremy is still King Jeremy the Wicked with a wise and crazy sense of humor, and he's OK.

I will never be normal like you

2006-08-18T14:19:00.000-04:00

On Monday, Jeremy has an appointment with another developmental pediatrician. I went back and forth on this for months, this decision whether or not to take him to yet another doctor. Obviously, reason won out over the part of me that was going NO! LEAVE HIM ALONE!

I used to have a sticker on my car that said 'Normal People Scare Me'. It's true. I much prefer people who are a little off, a little wacky, not quite right in the head. So why am I taking my kid to yet another doctor? Because he has to wear long sleeves? Because the vacuum sends him into screaming fits? Because his handwriting looks like some kind of alien heiroglyphics? So what, right? He's different, he's quirky, he's awesome.

But. What if he has to go back to public school one day? If Jackey loses his job or gets hurt or whatever and I end up having to get a job, that will be our only option for the kids. With the useless diagnosis we got from the last guy, Jeremy would get no services in the school...he would be labeled Difficult and A Problem, would spend hours in the principal's office, and what if he was walking down the hall when the janitor came through with that huge scary vacuum?

So. In 72 hours we'll be in the familiar lobby of the local children's center, waiting to be called back so somebody else can ask questions about my son, so I can divulge all the things he does that are simply a part of him but aren't right, so he can be observed like a lab rat so that someone can decide what exactly is wrong with him. We will come away with this either with a diagnosis that is accurate but not what I want applied to my baby, or with more Nothing and the wait for the next step which will likely be TEACCH.

I do not want to do this.

Deep inside this fecund swamp, they call us in our tiny boats

2006-08-10T10:04:00.000-04:00

Where my son, Jeremy, receives occupational therapy, there is a library of books pertaining to all kinds of 'special needs'. I stopped in there yesterday and checked out four books. No big deal, this is all routine. I have talked to a woman with a PhD and personal experience with kids on the autism spectrum, and she is going to evaluate Jeremy, because I know that ADHD is not the right diagnosis for him. I just became a certified support parent, so that I can help other parents navigate and survive the road to diagnosis, therapies, and a halfway normal life. I take Jeremy to his weekly therapy and have made friends with the other Therapy Moms who share our time slot. We started an online support group and recently had our first ladies' night out. I just started taking Sebastian to a therapist for his behavior issues and am awaiting an appointment for him to be evaluated for auditory processing disorder. He and Jeremy are both starting music therapy soon. Dylan, despite his tourette's and ADHD, has an active social life and even manages to go to work with his dad on a construction site without me worrying that he'll wander off and drown in wet concrete. There is a bumper sticker on my car that reads 'Believe in my child with special needs'.

I have my shit together.

So why, when I am idly flipping through a book about sensory issues and Asperger's Syndrome, am I suddenly weak-kneed and thinking, 'what is this?'

Sometimes it hits me, hard. I love my kids the way they are. I could sure as hell live without Sebastian's belligerence and defiance but outside that, they are perfect. In my eyes, they are perfect.

But they aren't, are they? And even less perfect than they are is the world they live in.

This is our story, a chronicle of what we're going through on a daily basis. In case you don't know, here's a brief rundown of where we've been and where we are now: Jeremy was diagnosed 'Developmentally Delayed, Atypical' when he was in kindergarten. The 'atypical' refers to his supposed violent behavior, which doesn't exist. A developmental pediatrician diagnosed him with ADHD when he was 6, after being referred by his pediatrician for possible autism. Dr. S, the developmental ped., says Jeremy has definite social difficulties and symptoms of autism but not enough for an autism diagnosis. He sends him for an OT evaluation, and he is currently receiving weekly OT from the best therapist in the world. He will be seen soon by the woman with the PhD, because some of his symptoms have changed and new ones have emerged. Sebastian has had a psycho-ed eval, which found no learning disabilities but indicated that he is slow in processing things. He saw a therapist twice, who pushed meds for his ADHD and who didn't seem to see the real issues we were dealing with. He is with someone new now and I don't know how helpful that will be, but we'll see. I am waiting on a referral for an auditory processing evaluation for him now. Dylan was diagnosed with ADHD and Tourette's when he was about 6, by the same doctor who diagnosed Jeremy. He is doing very well, and probabaly won't be mentioned much here unless something really significant happens with him.

In case you're wondering about the title of this blog, there's a song by Cracker called 'I want everything', that's been one of my favorites for a long time. When I look at my kids I hear the line 'All things beautiful...I want everything...' They are all things beautiful, and I want everything for them. The opening line of the song pretty well sums up where we are now:

'I'm standing in your corridor...I wonder what I'm waiting for.'

This is where I'll tell the tale, chapter by chapter, of the waiting.