Houston, we have diagnosis. (REALLY long)

Well first things I guess. I have an unnatural attachment to my current campaign character (D&D), and realized last night that the reason I prefer fantasy based RPG over, say, World of Darkness like Dave (WoD is present-time, vampires, werewolves and the like) is for the same reason I prefer reading those type of books I guess. I adore the role-playing side of it because I’m creating the same type of story I like to read. Yes, I’m a huge dork so at some point you may very well see an entry detailing this chick and how she ties into our/Dave’s world. lol Freakin’ cross-classed barbarian/paladin. WTF right? (Oh and DM’S ruling was that in his world, you don’t lose your rage ability LOL It makes the story more interesting anyhow).
Oh. And we’re still in 3.5 for anyone who cares/knows. Looked over 4.0 and my impression of it is that it’s built for power gamers. JMO of course. Dave would take us back to 2.0 if he could find the books…

Saw my RE in October, was supposed to have gone in November to let them do the Day 3 bloodwork (I guess she wants to test the normal plus a few – since my GYN had just redone that bw not long before). But my van died and Dave was in Tullahoma for inservice so I had to reschedule…and that meant I had to wait until day 40 to start the provera to kick my non-existent af into gear who JUST today showed up. Yea. So I have to call the office today and tell them I’m coming in Wednesday. Fun stuff. She also wanted me to try and lose ANOTHER 30 pounds…which I NEED to do anyway but it’s slow in coming…been fighting that for years. Even so, she understands that it’s harder when you have PCOS, esp with the insulin resistance. She’d just like to see me try because all it will do is help all around. She DID tell me if I made the effort and it seemed that it took too long or I just became impatient, I could tell her “Just give me my baby!” (Literally. In those words. LOL) But she’s pretty convinced just by what she can see that my symptoms have gotten worse as I’ve gained, and that by losing it could help a HUGE deal. And not just by losing but that it may (or shouldn’t be) impossible for me to get pregnant again at all.

I have a hard time believing that, it’s been 4 years of trying and 5 years of using NOTHING so obviously I’m skeptical. But I have a bad feeling if I started Clomid without losing some more it just wouldn’t work anyway :/ But I’ve had more on my plate recently so we’re not stressing on it (too much) right now.

She also wanted me to quit smoking, which I DID back in November. It lasted a little over a month. Yes I’m smoking again.

I have been EXTREMELY stressed and didn’t continue with the Chantix like I should have.

Cut to the point, my 9 year old just got out of Lakeside (a behavioral/mental health hospital) 2 weeks ago…and was inpatient there for 2 weeks.

For 4 years it’s been suggested but lacked finding the right doctor to diagnose it. So I had to look at this as a good thing, but they did finally diagnose Joe with Asperger Syndrome. Well, as his psychiatrist there (and who he will continue to see) put it, “mood disorder AS.” There’s no specific mood disorder listed, AT this time.

My concerns were between generalized anxiety disorder and juvenile bipolar…anxiety disorder runs pretty strong in my side of the family (I was diagnosed with gen. anxiety when I was his age, medicated and all, and other members of my dad’s side have some form of anxiety disorder as well I found out) . My sister (the oldest younger one lol) was diagnosed with gen. anxiety in the last few years, but they had looked into bipolar with her and even she admits it’s very well possible that it may just have been missed/misdiagnosed.

And from the reading I’ve done, the symptoms of bipolar in children can present differently, in an extreme way. It actually shares symptoms of both ADHD as well as AS, and he’s been diagnosed with both. They took him off his Adderall while he was there, backed up the dianosis before they put him back on it.

But the meltdowns were the main reason he ended up there. We had parent/teacher conferences at the end of October and I asked (like I always do, since even though we lacked a diagnosis, I’ve always made sure his teachers knew that it was being looked into as a possibility) how he was doing as far as his behavior. It’s been pretty odd/extreme in the past.

Well his teacher said he was doing great, and his Excel teacher (for the gifted class) was the only one who mentioned he was fidget-y (is that a word?) and restless in the mornings, and I just attributed that to him taking his medicine for the ADHD about 30 minutes before he got to school, so we started trying to give it to him when he woke up instead of right before he left.

Well two weeks later I got the first phone call asking me to come pick him up. He apparently had a meltdown in the cafeteria, because they didn’t have the type of ice cream he wanted to buy.

I guess he started crying and then refused to move. He’d never done this so no one really knew what to do, they have another little boy in the school who has AS and at conferences his teacher mentioned “if he has Asperger’s, it’s definitely not as severe as the other child we have here.” But nothing was ever mentioned as to whether that child has ever had a meltdown at school or if anyone knew what to do…obviously not with the individual but in general.

Well hell, he hasn’t ever done that at home so I didn’t know what to tell them.

He was ok by the time I got there but they were having an assembly and they didn’t want to chance the crowd and noise setting him off (we’ve all known that a lot of activity around him kind of makes him go haywire…but it’s always been mainly attributed to the ADHD).

The next week (a few days later) I got the next call. His fascination right now is folding paper…into ANYTHING. Planes, spinners, poppers, fortune tellers, origami…you name it, if he can figure it out, he’s folding it.

Well a teacher had let him borrow a book on different paper airplanes and he had it out in class.

Now let me just say, that even though nothing had been diagnosed, this school has been great with him…they’ve actually gone above and beyond what they were required to do, all (at that point) based on the suspicion that he had it. His teacher has a clock on her desk FOR HIM, so that he knows when it is this time, we do this, when it is done here, he has free time until whenever and so on.

He was folding planes and it was time for work…but he didn’t want to put the book/paper away. Honestly I don’t know if it was instantaneous or if she kept pushing him to put it away, but not forcefully enough or what but he had a moment, was under the desk, had to be carried out of the classroom etc.

There is a counselor who works with some of these kids with the school (an outside therapist) and he was there that day, so he, the vice principal, his teacher, the school counselors, etc and I sat down and obviously the first thing they asked was “What’s going on at home? Has anything changed?”

Well. Sorry Charlie, it hadn’t and I told them. I had no idea what was going on…and as far as suggestions on what works at home I told them I didn’t know, he’d never done this at home, and what I DO at home, they can’t – he goes to his room to calm down.

In the meantime, the behavioral therapist (the school’s) had him in her office and brought him back, and she had given him back the offending book and more paper…and allowed him to fold planes.

I saw this and mentioned it to the counselor that just maybe he was doing this to get his way at school…bc they had just told me 10 minutes before that the day BEFORE the first meltdown, he’d been upset, crying (but apparently not badly) that he’d forgot his ice cream money at home. So a teacher gave him some.

I made the mistake of talking about this in front of Joe, and how he didn’t do it with us. I told him it was time to go, he needed to put the paper away, but he wanted to finish. I told him he would finish in the car and IMMEDIATELY a look came to his face…and he crossed his arms and sat back and wouldn’t move.

You know. Hindsight, 20/20 and all…*sigh* I’ll get back to this point in a minute…

I picked up the paper and told him I would carry it, he could have it in the van and he wouldn’t move. So I walked out of the inner office, and he stood up and started what would have otherwise been seen as a temper tantrum.

I don’t know how long we were there with me trying to get him to walk to the car but I eventually told him I was going to throw the planes away if he didn’t…well, he didn’t and I threw them away.

And he hit the floor, screaming. The vice principal (bless his heart, I’m actually thankful he was one of my husband’s teachers at one point) carried him to the car for me…and on the ride home, he went through any manner of “You give me back my stuff…” with me telling him I was going to take his things at home too and him telling me I would have to pay him for everything I took…

Yes my 9 year old.

How fucked up was it that even though I was HOT…I was tickled to death that he was talking back like a normal 9 year old.

First, you have to understand that while I knew some about Asperger’s at that time, I wasn’t familiar with meltdowns, as far as I knew he’d never really had one.

I was still convinced he was just trying to get away with something.

I’m STILL convinced that at LEAST that one day, part of it was meltdown, and part WAS him intentionally being a butt to get his way. But that was the only day.

Hitting the floor when I threw the papers away…that’s something I won’t do again. Not that I won’t take something away but I don’t believe he’d even had time to process that it was going to happen before I did it, and even if he had, it probably wouldn’t have stopped it.

And before anyone not familiar thinks “Well that just sounds like a normal kid, you should have smacked him.”

How many 9 year old do you think will lay in the floor and act that way over PAPER in FRONT of their peers? I don’t know many.

We ended up at another meeting with the school, or rather, I did…Dave still really wasn’t convinced on the AS and because of that, honestly, I was afraid to let him or ask him to pick Joe up during one of these. Even though I didn’t know much about meltdowns, I knew it wouldn’t have been handled by him…I went and read after that one all that I could.

I took him to his pediatrition, the school wanted to know if it might be his meds for ADHD…I wasn’t convinced, I figured if it was just him acting out because of that, it would happen at HOME after they wore off, not the morning at school. But I talked to him, and told him I didn’t WANT to increase his medication but that I did want to find a pediatric psychiatrist because we had been concerned/suspecting asperger’s for a while. He agreed to help set one up but told me “I wouldn’t worry about that, it seems like everyone’s getting diagnosed with it lately.” Well. They said that about ADHD 15 years ago too but he was just fine with that diagnosis. But I left it alone.

Well don’t you know, the wait list for all the damn psychs out here was at least a month, up to 4 months for pediatric.

I had a few more calls, witnessed him in all states that I never saw at home (hyperventilating…or rather, forcing himself to breathe that way, locking up, etc).

It finally came down one day…I got another call to come get him. I had been asleep (third shift you know) and told them I would be there but it would be a minute. We live less than 10 minutes from the school but I still needed to wake up and get dressed. I figured he would have calmed down by the time I got there as usual…20 minutes later I was walking out the door and got a call from the principal asking if I was on my way and that they needed someone there in the next 5 minutes or they were going to have to call someone to come help.

I knew something was wrong, and I called David at work to come home, because by this point my nerves are shot. This all took place in a month’s time, I had no idea what to do, what was going on, and I’d been crying randomly everytime I got a call.

I got to the school, walked in the office and EVERYONE involved is standing by the nurse’s door (right inside the office)…they had a sheriff’s deputy (the one assigned to the schools) sitting with him and he’s yelling at the top of his lungs in a weird, deep, rhythmic tone, standing in the corner staring off into space…and I lost it.

The counselor just HAPPENED to be there that day (not a normal day for him to be in) and he and the principal asked me if I could talk to them and I just lost it. I was crying my eyes out, I told them I didn’t know what to do, he doesn’t do this at home, I’ve tried to get him an appt and it was going to be months before he could be seen, everything.

The principal told me something had to be done and at that point he wouldn’t be allowed back into the school system until he’d received treatment and they had documentation of it…and I told her again it was the end of April before he could be seen…his grades had already gone from HIGH As (meaning he kept a 99.8 GPA) to Fs because he wouldn’t do his work during all of this…

The counselor was the one suggesting (and looking back I think they’d all talked about it before I got there) that maybe we needed to look into some inpatient help. All I could do was nod…by then I didn’t know what else to do, how to help.

So he called Lakeside for me…I tried to talk to Joe, but in those moments talking to him, touching him…it just makes it worse. The sheriff’s deputy is telling me that “it’s better that he’s going there, the only other option we have is to take him to juvenile” and the principal is saying that the meltdowns were getting worse and worse and he’s fighting them, throwing furniture…they were afraid he was going to hurt himself (he’d fought when they carried him out of the hall/class, I don’t remember and almost fallen on his head) or someone else.

They walked him to another area of the office, away from everyone (all of these kids area seeing this). I called David again, had to track him down because he wasn’t in his office…I lucked out and called Central, I was going to have them call him over the radio but he was up there.

I spoke with the Lakeside lady and asked her, if they kept him what he need, etc…and found that they wanted me toleave straight from the school…did I think I could drive him safely, they didn’t want me going alone just in case he did this in the car…if I couldn’t they would have to call another juvenile behavior center to transport him…

I left him at the school to get him some clothes, called a friend to pick up the girls off the bus.

When I got back, they had left him alone with the school counselor, and she had calmed him down. Or rather, he calmed down once everyone left him alone.

I found out after that, that the therapist had talked to one of the psychiatrists who worked with the kids there (he knows him) and they actually approved him for inpatient BEFORE assessing his needs. That’s not how it usually works.

Skipping forward…I had to call work and call the deputy warden’s office, I was scheduled to leave for inservice the next week and there was no way I was going to be 4 hours away with this going on…

We had a bit of an issue with the insurance not wanting to approve inpatient as well. They apparently said his needs were “not acute enough to warrent this level of care.” Which set me off…asking was it not enough that they had a deputy there? That he can’t go back to school because they feel he may be a danger to himself or others? That I had a sheriff’s deputy telling my 9 year old that if he didn’t settle down he was going to cuff him? wtf????? btw after he said that I managed to get my head about me and pulled my phone out to video tape some of this…it’s been a huge reason why we couldn’t get a diagnosis because everytime he sees someone, it’s for an hour every visit and he’s fine

So I pulled the videos out to show her…they had given me the names of some local outpatient and the one I knew, I told her flat out, I wasn’t taking him there, they are KNOWN in our small town for prescribing medication before diagnosing (meaning, in the first visit) and as far as the other one, it didn’t exist. Well she called the insurance back and told them, they found out OOPS they were wrong and I was right, the other place is a figment of their systems imagination and even the wait list to the shitty place was a month.

So they approved the stay ONLY because he couldn’t immediately get outpatient. @@

He was actually fine with staying. I had told him he was going to the doctor, but I didn’t tell him he was staying until we were on our way because I was afraid he wouldn’t take it well or worse.

But he wanted to stay…he asked me at one point during the insurance issue if he was going to be able to…and I asked if he WANTED to stay. He said yes. I remember asking why, and he told me he just wanted to see what it was like to stay somewhere else.

But when we went to visit the next night, Dave and my mom were with me. As soon as they let us in and we turned to go into the visitation room, I heard him. Throughout the building. And I told them, “That’s him.”

David didn’t believe me. I told him it was the same deep, rhythmic yelling I’d heard the day before. Sure enough, apparently they had been doing arts and crafts and told him it was time to move on, he could finish it later.

I was told later that they put him in the “quiet room” (a room with nothing in it where they can be monitored, door open unless they’re being violent and attempting to leave, but still left alone to calm down) where he rolled into a fetal position with his hands on his head and yelled for about 35 minutes.

All I could say to the nurse was I was sad to not see him…but honestly I was glad it happened. I was so afraid that they’d keep him the 72 hours and he’d be fine and it would be back to the same thing.

2 weeks. I tried to pick him up after 9 days, but he had it in his head that he wanted to go to my mother’s house and had a “meltdown” in the waiting room as I was signing the papers.

According to the doctor, he has an issue right now with not being able to handle frustration, being told ‘no’, and serious issues with transitions.

No one knew what triggered it so suddenly but as I said, hindsight. Looking back at everything, I think the school unintentionally did. When the teacher gave him money because he was upset.

Normal children figure out and test early on getting what they want by acting out. Joe never did. I think what may have happened is that it started out as a normal, getting what I want issue, and progressed into something he couldn’t control.

Now that may just be the tip of the iceburg, because I realize that little things can cause these. But the “meltdown” he had the day I came to get him wasn’t typical. He directed it AT me. He was upset AT me. During his typical meltdowns, he isn’t focused on ANYONE.

Granted, he is also on Risperdal now, but he also didn’t think they were going to keep him…until they had to carry him back to the quiet room. I could tell in his voice that he was surprised. Amazing the things you realize you “know” about your kids like that.

I also realized that it wasn’t necessarily the he DIDN’T have these at home, but that I was somehow unconciously recognizing it before it reached the point of no return, and had always been able to deflect OR, as in most cases, isolate him to his room to calm down on his own.

I don’t know what’s going to happen at school. Because at this point, it’s extremely touch and go. Every little thing is still HIGHLY upsetting him…but I did notice that after that first meltdown at the center he never did again with them.

Where the mood disorder comes in…they deal with a lot of autism/asperger there, and most of their meltdowns (I was told by his therapist there) last maybe 15-20 minutes and they’re done. Joe’s last an hour, and can last longer. Which is also a sign of bipolar Among other things. That was a big one.

I was able to keep him with this psychiatrist, I had to convince the therapist (they handle the discharge) that I don’t MIND driving an hour to Memphis – first, if it means a better doctor, and second, I’ve been doing it for 15 years. We live in the middle of nowhere. I don’t want to see someone locally who doesn’t handle this all of the time. I want him to see someone who handles spectrum children on a daily basis. His wait list was 4 months but she managed to find an opening the beginning of next month…and I need to call the therapist I released his information to now that the holidays are over…they were supposed to fax his info to them.

Now I just have to deal with everyone who I have him around and have spent all this time explaining that this was what was going on even without the diagnosis…I have to deal with getting them to actually SEE that yes, I was right, no, you can’t deal with it by spanking him or grounding. It doesn’t work. I’ve tried all of that.

I have to deal with my mother in law who works with mentally handicapped adults every day and has for 20 years…who has rarely dealt with autistic adults, never children, and the only AS adult she “knows” is one of her former boss’s son. Who doesn’t receive formal, updated training on these issues, only on handling their medications that are prescribed by OUTSIDE doctors. I have her “friendly advice.” Which is at least 95% uninformed and wrong.

There’s still a lot we haven’t worked out, one thing good is that he’s finally talking about how he feels. Or at least mentioning. I had no idea he believed he had nightmares when he slept with his head by a window :/ I knew he had them often, and HAS had them since he was a baby. But not what they were about (shadows grabbing him, the tree outside of his window coming in, turning into a man and getting him – those were nightmares he remembers having at three years old).

He was given a book at the hospital on the earth and nature. He’s intensely upset over living on a fault line, because he read that a large earthquake can make the ground act like quicksand.

He’s upset that in 2.5 billion years, the sun will die and everything else will die too.

He told me today that “Today I’m stressed because of our natural resources…a lot of them aren’t renewable…like metals and water…” He has a panicked look when he talks about these things, but his tone of voice is still a mumbling monotone.
(Except for the other day when he was worried about dying with the sun, even though he KNOWS he won’t be alive then. I was afraid he was going to freak out about it.)

I’ve been reading and crying a lot, especially when I read the lists of symptoms/signs of AS. Not that I haven’t read them a million times, but if someone writes it a different way or – I’ve ordered some books for the kids, just to understand – when I read passages from these books.

I cry. But not because I’m upset that he has this, it’s more of a relief. I knew before but didn’t, and some of the things I wouldn’t have considered as a sign before, I see now.

But it leaves me wondering about Ireland too. I’ve wondered for a while if she doesn’t have ADD/ADHD but I haven’t wanted to bring it up because I don’t want it to seem like I’m searching for things “wrong” with my kids. And I know that does them a disservice but it’s involuntary. ADD/ADHD runs in at least my side of the family as does the anxiety. But then, she walks on her toes, and holds her hands in a little “t-rex” pose when she walks/runs and I start to wonder about her, but then I feel like I’m just taking what I know of one and putting it on another.

And I’ve done that for years with her. Just because I KNEW there was something there with Joe. Never mind people telling me I may want to mention a neuro check with her over that, it’s a bump I have in my head. I don’t want a doctor telling me “No you’re just seeing that because your son has it.” I don’t see the same things in her, but there are things I wonder about.

Bah. I’ll eventually get over that…I do want to make sure with her, the last thing I want is people looking at me thinking “All/Most of her kids have a ‘diagnosis’ but I think that’s crap.” I also realize there’s a prevalance of families who have more than one child on the spectrum. But I’m not convinced it’s that far with her, but then again, Joe is textbook, down the line on the symptoms. You don’t have to have them all to have it.

See what I do to myself? I’m going to need counselling too I think :/ Not just for this, but I found out that my anxiety was apparently a lot worse than I thought, I was having delusions, self-mutilating (I would see bugs biting me, fire ants, and SWORE I was just itching the bites until they scabbed and picking those…apparently as far as my step mother says, I was picking healthy skin into sores) etc. But I was under stress. It all stopped when I moved in with my mom (ironic, no? for those who’ve read me a while) at 10 yrs old.

I do worry that if I end up under the right kind of stress…will I have those issues again? I have at least one that I believe is related…when I get emotional, and I mean happy, sad, pissed…anything. I start shaking. Shivering. Violently, like you would in the cold. Fucked up eh? I can be just a TOUCH emotional, not to an extreme and it happens.

I mean, during our game last night, we (dave as DM and myself as my character) role-played out a scene between these two characters, and the npc said something IN CHARACTER to mine, and (as I mentioned lol) seeing as how I’m apparently all vested in this character lol it made me shake. FUCKED UP!

Anywho. I started with that and I’ll end with it. My character limit is almost up. Kudos if you read all of that 😉

That and Joe has just informed me that it was “57 minutes past lunch time” and that was about 10 minutes ago…hell I don’t know. He can tell me better how long ago :p

On a related note, it’s a good thing at home, if we break schedule, he doesn’t freak about it. He’s just very good at stating the facts. “It’s 23 minutes past shower time” or “It’s 3 minutes past bedtime.”

Yep. And we don’t even HAVE a written out schedule. He just knows what time we normally do things. Hell I don’t even pay attention to what time we do things.

It’s just one of those AS things 🙂