Well, never mind.

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

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

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

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...

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?

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*

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?