Never a dull moment here!

Things have been just as insane as always, maybe even a bit more than usual thanks to school being out for the summer. Jaymes has been having a lot of trouble with his anger, on and off. Not sure what is causing it though. The strange pupil dilation issue continues, it happens nearly every day and sometimes more than once a day. His EEG came back normal, despite his eyes dilating during the test, so apparently it is not seizure activity that is causing the problem.

In addition to the pupil dilation and outbursts of uncontrollable rage, there is a new symptom that's added itself to the list in the last couple of weeks: nosebleeds. Now, Jaymes has never had nosebleeds; even when he hits his face or picks his nose and does draw blood, it's only a couple drops and that's it. Last week he had the first, which really was only noticed as a little smudge of blood on his right nostril. His eyes were dilated at the time, and he had just finished attacking me in the back yard. a few days later, it happened again, although I was not entirely sure that it was new- I figured it could be what was left of the first bleed just coming out. Either way, it was very minor. I called Dr. Klinepeter's office, and they said we'd let him get away with the two nosebleeds, but if he had another we were to take him right to the ER.

My mother in law and her boyfriend came last Friday to visit. As usual, it was sort of an awkward, uncomfortable thing. Lots of nasty remarks about my driving, my cooking, how much time I spent outdoors on my pony, how Sierra should be 100% potty trained because all kids can be potty trained by two, how if we hadn't moved from Florida to North Carolina, the school there would have had Jaymes potty trained years ago (and no, Florida schools where we lived were pathetic- they have nothing on NC. The Florida schools Jaymes went to couldn't even accomplish making IEP goals that were achievable for him!) So yes, not a whole lot of fun. I got poked at a lot more than in the past. On the plus side, it's a good reminder for me of why I said I will never go back to Florida again for holidays like we did last Christmas.

Anyway, we'd had a pretty typical day. Going out a little, hanging around the house. At around four, I went in and took a shower to get ready for Jaymes to go to Occupational Therapy at 5:30. Had finished my shower and gotten dressed, and was brushing my hair when Jason yelled at me to open the door right now. I was puzzled, but ok, opened the door. There was Jaymes, screaming for a bandaid, and literally spewing blood out of his nose. He was soaked, Jason was soaked, and there was a long, nasty trail of blood that led from my living room to the bathroom door.

Apparently, Jaymes had been playing Lincoln Logs at the table with everyone in there. He did not hit his face, and was not picking at his nose. Jason noticed a drop of blood on his hand, looked at Jaymes, and it really got started at that point. Totally random. His eyes were dilated, and he was jerking his head back and forth slightly while crying hysterically and coughing on the blood, which was flowing hard enough that it was filling up his little mouth.

I picked him up, grabbed half a roll of paper towel, and gave it to him. Put him in the car and drove about 90 MPH to the ER, thanking every deity I could think of for not letting me get pulled over for speeding. Kept checking back in the rearview mirror, and saw poor Jaymes scrubbing his nose furiously trying to stop the bleeding. It bled very heavily for the whole 20 mins it took to get to the ER. Jaymes face, hands, clothes, and carseat were covered in blood. The huge wad of paper towels was totally saturated in blood. Thankfully at this point, the bleeding had stopped.

At this point, I can't help but feel very irritated. the doctors kept us in the ER for hours, but did not do a single test. They refused to do a blood pressure on him, because he was autistic and would scream. He's on blood pressure meds, might be a good idea. But you know, I'm just a stupid uneducated stay-at-home-mom who couldn't possibly know her child as well as this random doctor.

They told me that the nosebleeds and the eyes dilating are unrelated. I don't buy that- he's never had nosebleeds until recently. And all three occurred after the eyes dilated, he had a meltdown, and then he calmed down. That's not a coincidence in my opinion.

They also told me that the bleed was probably just the result of allergies. I explained that Jaymes was very thoroughly tested for allergies by that hospital's allergy specialists. The only test that had not been done was the skin test, simply because Jaymes could not be still long enough to have it done. He was blood tested for everything under the sun, including the pet rats we had a couple years back. They swore to me he was not allergic to anything. So, if this was caused by his non-existent allergies, someone's got some 'splainin to do.

And as usual, the "plan of action" was... No action. Take him home, hope it doesn't happen again. Stick some vaseline up his nose. Wonderful.

I spent the day today on the phone with every doctor he has seen in the last year. Talked to the primary care pediatrician's office, they said that there would be no point in seeing him, but that the doctor might order a CT scan and they would get back to me. The allergy doctor called me back, but my phone didn't ring and it went straight to voicemail- and I'll never get ahold of her again, so hopefully if I leave a message tomorrow, she'll try and call again. Left one message and talked to the patient scheduling person at the psychiatrist office (Dr. K, who is the only doc who has shown any real concern about all this), but did not get a call back today. Apparently Dr. K is out of the office for awhile, so even if I do get a call, it'll be someone who doesn't know us or have any of the background on things. Talked to Duke Neurology, they were kind enough to move his appointment up by a week, so he will be seen on Friday. The pediatrician would not move the brain MRI up, that is a week from today. I also spoke to the Ear/Nose/Throat specialist, and they will see him Friday afternoon, to look at his ear infection and also to see if they can find a physical reason for the nosebleed from hell in his little nose.

So while I still feel like I'm not doing enough to deal with this, at least things are moving forward. I just wish the docs would take this seriously. I'm sorry, but anyone who tells me not to worry about a child who comes in with unequal pupils, loss of balance, serious change in speaking ability, bleeding profusely from the nose after the pupils dilated... That's bullshit. Plain and simple.

I will get someone to take it seriously, and I will get to the bottom of this if it means going through every doctor in the state of NC. I will not be told that this is all because of the autism. That is a stupid copout.

Still here, but waving the white flag of surrender...

This has not been my month. Not a good one for Jaymes, either. I have never been so insanely busy, exhausted, and overwhelmed as I am at the moment.

The unequal pupils thing continues to happen, though it's been seen by a whole bunch of medical folks, which is good. He did it during the EEG (and no, I still have no results from that), during a hearing test, at the pediatricians, at the ER... It totally freaks out my one friend. The doctors have needed poking and prodding to do ANYTHING, which is incredibly frustrating for me. The only docs showing any real concern are Dr. K, who prescribes his meds and who got the call the first time the pupil thing happened, and Dr. A, the pediatrician.

Anyway, Jaymes has appointments for the brain MRI on the 7th of July, and for the neurologist at Duke on the 9th. In August he will see genetics at Duke, on the advice of a friend with a medical background. We really need to find out why he's been like this, and whether there is something bad going on in his sweet little head. Very scary.

I spent a ridiculously long day trying to get meds for my anxiety at the psych place up in Winston. Got there at around 9am, was not seen till almost 1:30. Sierra was with me, she was such a good girl. And thank god for Ipod Touch and Ipod Touch apps- My Little Suitcase saved me a lot of cranky bored 3 year old. Sierra played it over and over and over and over. Totally worth whatever I paid for it- $3.99 maybe? Or it might have been $1.99. I can't remember. Again, totally worth it. Anyway, after an entire day wasted on waiting, still no meds. I do have an appointment though, for the end of July. I was given the option of coming back the next day and waiting for a psych cancellation, but opted not to waste another entire day. That, and the place is kind of scary. Lots of realllllllllly scary looking people in varying levels of insanity. One very tough looking lady kept telling everyone in the room "if they don't see me soon, Ima come through that window."

Yikes. I think I'll wait for my appointment. I'm not as insane as I could be, anyway.

Anyway, school is over, summer vacation is here. Went to Jaymes school picnic thing yesterday, it was really nice. Was great to see how many teachers and staff care about Jaymes. He's a popular little booger.

I found out that Jaymes principal did decide to let him stay back in Kindergarten next year. I cannot describe how happy and relieved I am about that. I admit that for awhile I really did feel like it was a constant battle with the school folks, like they were kind of trying to keep services from Jaymes... But I have come to realize that while sometimes they underestimate Jaymes abilities, for the most part they really are wonderful people who do want the best for him.

His teacher, Mrs. Colditz, turned out to be the best teacher Jaymes has had. She really understood my reasoning for the things I asked the school to provide, and went so far out of her way to do as much as she could to help Jaymes succeed in school. I hope he has her again next year, she really is fantastic. The classroom aids were fantastic too- his favorite, "Miss Tasha" is going to another school, which is sad because we really liked her.

It turns out I totally misjudged the "new" principal, Mrs. Cannon. At the beginning of the year, I really felt like she didn't understand where I was coming from (particularly regarding the school bus stop issue that kept Jaymes out of school for the first couple weeks), but so many people I'd talked to told me that she was wonderful- and they were right. I feel bad for being such a witch all school year about things, it's hard to advocate for your child when you feel horrendously guilty for advocating for your child... I know, pathetic!

Anyway, I sense that my sleepy pills are kicking in, as this is getting more and more rambling and less and less coherent... So to sum things up: Jaymes had/has a great group of people looking out for him- at home, at school, at therapy, and everywhere else. Next school year will be a lot easier than this one, now that I and the school staff know one another a bit better. I was wrong about quite a few of the school people- Cash is a fantastic school with a principal who DOES understand that in some cases (JAYMES) you really do have to think outside the box.

So to any school folks lurking around the blog- thank you.

Well, it can't get much worse, so it'll get better soon- right?

Jaymes' eyes are still doing strange things, and his behavior and attitude are not doing so great either. He has his EEG last Friday, and his one pupil was dilated during the test, then went back to normal about halfway through, so if there's anything seizure-like, hopefully we will see it.

It has been an exhausting couple of weeks, and with the way Jaymes has been lately, I'm about his only fan right now... And I'm getting close to hitting my limit. Hoping the weather will hold up tomorrow for a trail ride with friends so my near-to-exploding head can hopefully release the pent up "ARRRGGGHHHH" in there and I can go back to being the patient mommy I usually am. Let's just say today's spitting on the cart and floor at Target pushed me to the limit. I need my horsie time to regain some sanity!

Why Grandmother, what big eyes you have...

I'm a day late on this topic, mostly because I have been totally exhausted, but I figure a day late is better than a month late, right?

We have a lovely trip to the ER the other night with Jaymes, yet another one of those "sit for 6 hours and learn NOTHING" visits. Long story short, we had been at therapy. Jaymes had finished PT and was wreaking havoc in the waiting room waiting for his OT session. I asked him to not move the table, he ignored me, so I went and picked him up and made him sit with me. He went into one of his rage modes (in keeping with the weird behavior for the last few weeks) and bit me once, then punched me until I held his hands so he couldn't do it anymore. He screamed a few times, then curled up and went to sleep in my lap. He woke up a little bit later, when his therapist came out to get him. She noticed (his back was to me, so I didn't see it) that his eyes looked funny- one pupil was tiny and the other was huge. We kind of watched him during the session, and she didn't do any of the usual high energy stuff like the trampoline or ball pit. He was a lot calmer than usual, and he wrote some very nice "m's" A the end of his session, his eyes were still like that, so she suggested I call the doctor and see what they thought. Called Dr. Klinepeter's after hours answering service because Jaymes had had an appointment that morning with his physician's assistant (and his eyes had been normal then). He told me to take him to the ER to be seen, because his eyes changing like that for no apparent reason, coupled with his strange behavior lately, was cause for concern.

So we sat for about six hours while doctor after doctor came in and said (and I quote) "I'm stumped." Each doctor told us the same thing, that they would send in someone else. Finally they said that because he would have to be sedated, diagnostics like an MRI/scan of any kind would be out at that time of night, and that there was nothing anyone could do.

Jaymes was very much not himself until about an hour before he was discharged from the ER. He sat with me, was absolutely panicked if anyone looked at him, and refused to eat or drink. I know that stuff is kind of minor, but he really wasn't himself. The doctors had to examine him while he shrieked in panic. Not fun.

Anyway, they did an EKG, and his heart is fine (thank god!) and they'll schedule him for an EEG to see if there is any seizure activity. But at this point, nobody knows why his eyes changed, and there isn't really much interest (doctor-wise) in pursuing it.

This is the 2nd time Jaymes' pupils have done this, the first time was in 2008, when he passed out during a walk. When he woke up, his pupils were different. Nobody knew what caused that, either. I am SO frustrated that these doctors can't figure out what's going on with him, and that they don't even seem concerned. I'm sorry, but his pupils doing that plus the total change in personality in the last few weeks REALLY bothers me. That cannot be normal.

Anyway, we're watching him now, hopefully nothing happens and he'll go back to normal for good. His eyes are normal again at least.

A turn for the worse...

Well, I don't know what is going on with Jaymes lately. He is becoming more and more violent, and more and more angry. I don't know if it's the new (not new anymore) meds, or what. Anyone ever heard of kids with autism getting really aggressive on Abilify?

After reading a post on Squid's blog about her son's bout with Abilify, I really think it must be the meds. But whatever it is, it is out of control and it needs to stop.

Every day Jaymes is angrier and more aggressive. Yesterday I wouldn't let him knock over the slide, and instead of losing interest like he would have done in the past, he stood them and bit me. He also slapped, kicked, and scratched hard enough to draw blood. I don't really know how to respond to this, my thought was to stand there and ignore it and let him wear himself out. Problem was, he was really hurting me and I couldn't just ignore it because it was too painful to pretend it wasn't happening.

This is not Jaymes. He has never been aggressive, especially towards myself. He's been known to bite in the midst of a very very bad meltdown, but has never pursued someone around the yard attacking them.

Every time he gets angry, everything in sight gets hurled. He smashes things against trees, he breaks things, he throws toys at his sister, he beats the dogs. He screams so long and loud he turns purple. It's terrifying. If he were a teen, we would be in danger of him hurting himself or us. Thank god he's tiny still. We have got to get him under control though, before he is big enough to really hurt someone.

The plan is to call the psychiatrist Monday, and get him in ASAP to be seen and get this medication stuff figured out. I know that originally, when I'd called to say that Jaymes had been more hyperactive and more irritable, the psych had said she'd never heard of a reaction like that with Abilify... However that post on Squid's blog could be copied and pasted here, with changes to the names and places involved and it would describe what we're going through with Jaymes. I can't imagine that's just a coincidence.

Anyway, here's to hoping everyone survives the weekend with as few injuries as possible. Send happy thoughts out to Jaymes- he needs them.

So what about Sierra?

Jaymes has been having a very hard time of things lately (at least at home) and I have noticed that Sierra has some definite opinions about some of the situations we find ourselves in when we're out of the house.

I don't know whether it is his "new" (meaning not really new anymore, but still...) meds making him like this, or a stage, or the phase of the moon or whatever... But it sure isn't fun. I've never seen the little guy so angry. Everything sets him off. I told him to take a time out the other day because he sprayed Sierra with the hose, and the result of my time out was an all out meltdown from Jaymes. He threw everything within reach as hard as he could, he screamed at the top of his lungs. He kicked the dog, and tried to punch her too. He then ran around the yard throwing everything he could find. He turned purple with rage. It's insane. It's so not my Jaymes.

At Walmart, he sat in the shopping cart squealing loudly, then just randomly got angry and started slamming his stuffed bunny's face against the side of the cart. Then he went back to repeating "yo yo yo yo yo" loudly. A few seconds later he was angry again, and grabbed a lemon from the basket we were walking past and hurled it at an old lady. The old lady was not amused, by the way.

We are reaching a point of not being sure if we can get him out of the house much more. He is so angry, and he is so active and loud. I worry that he will hurt himself or someone else when he is like this. The odd thing is that he doesn't do this at school. At school he is the happy-go-lucky little guy I know and love. Then he gets home and starts attacking my husband (mostly Jason, more than myself or Si-Si) by kicking him, pinching him, slapping, or punching. He will actually pursue Jason around the house attacking him. He'll scratch/slap/bite/kick me if I directly interfere with something he is doing (like taking the hose from him to go turn it off), but he does not pursue me the way he does Jason.

The worst thing right now is the meltdowns like I described earlier in this post. The ones where he races around the back yard or house throwing and breaking and hitting everything within reach. Sierra knows to stay away from Jaymes when he is acting this way, but it really saddens me that she does know this. How horrible is it to be afraid that your brother will hurt you?

Sierra has started to voice her opinions about Jaymes, and this makes me feel even worse. She asks for Jaymes not to go out with us because "Jaymes is gonna yell and frow fings. (throw things)"

She actually becomes visibly embarrassed when we're out, and that makes me fear for the future. I have a friend who told me once about when she was a kid and had a developmentally disabled (Downs I think) sister. Her biggest feeling about that part of her childhood was the humiliation she suffered because of her sister's behavior. I hate to think about how Sierra will feel later on down the road. I don't want her to hate her brother or feel like she can't enjoy family time out in public because of his behaviors.

I guess the only thing we can do right now is to continue trying to work Jaymes through these issues, stabilize his meds, and help him grow to his potential. In the meantime, I make sure to spend lots of special Sierra-Only time with her, so she realizes that it is not JUST about Jaymes and his autism. Yesterday Jason was off so we took Si-Si to the childrens museum while Jaymes was at school. She loved it.

We'll keep pluggin' along like always, and hopefully things will improve soon!

Wow- a good IEP meeting.

We had the IEP meeting yesterday, and I do believe we broke the current time record- 5 hours. Ouch. We also probably broke the number of people in the meeting record with 15 people. Crazy. Anyway, it went pretty well. Not tense and nasty like usual, which I think was partially because someone had forgotten to let the "higher-up" school district-whatever-lady that the time had been changed from 1pm to 10am because of my school schedule. This was a fantastic stroke of luck, in my opinion, because (while I'm sure she doesn't do it on purpose) she gets so stuck on technicalities and wording and everything else that she derails and slows down the meeting's progress entirely.

Jaymes will be getting summer school (ESY). Nobody felt the need to really argue against it other than Jaymes' teacher, but I think that after the reasoning was explained (and the school OT spoke up as to how much it helped Jaymes last summer) she sort of got it I think. And if not, it's not the end of the world because the rest of the IEP team agreed that Jaymes needed ESY because of the incredible number of emerging skills he's popping out with right now. So good news. Thank god.

One thing I was extremely impressed with was the Audiologist/HI teachers. They are incredibly good at what they do, and unlike many of the school evaluation stuff, this was done relatively quickly, and with Jaymes in mind- not the school's budget. They did decide to add on Hearing Impaired as a secondary area of eligibility (I think that's the correct term, might not be though.) which means he gets HI services. Good news. The biggest thing they decided on doing was to set him up with an FM system that hooks to his hearing aids. I had planned to argue for that, and here it was already suggested and written into the draft IEP! For those of you who don't know what that means, it's sort of like a little attachment that hooks to the hearing aids. The teacher has a mic of some kind and can talk directly into the hearing aids- so Jaymes may find it a lot easier to focus on what the teacher is asking of him, and probably will be able to be redirected a lot more easily. I think this is fantastic, and if he does well with that at school we might look into getting the same set up for at home in certain situations.

According to the reg. ed teacher, Jaymes is doing very well in her class, and enjoys his time in circle, centers, and music. He is participating some now, rather than just sitting there, and he is bringing home things he learns. He comes home every day and tells me about the calendar and weather. "March all done, April. It's cloudy. It's sunny. I like McGee (Mrs. McGee)." This is such a HUGE improvement, I am so proud of Jaymes.

Jaymes EC teacher and I were not exactly in agreement on the subject of Jaymes writing. She told me he can only trace or do hand-over-hand, but if you look around my back yard, you'll find evidence to the contrary- on every surface. On the side of the house, written in pink chalk "jaymes." On the trampoline, letters a-z, minus a couple that he just couldn't make. On the picnic table, a line of M's and N's. On the driveway, "mommy" and "daddy" which I helped him spell. Not to say everything is perfect- not by a longshot. His S's are all over the place. His Y's are upside down. Some of his letters are quite messy. BUT, they are, for the most part, easily recognizable as the letters they're intended to be. If he doesn't do that in school, there's something going wrong. I think he probably is, but it's not noticed. Who knows. In general I'm very happy with both of Jaymes' teachers, so it's not a huge deal. We're not going to agree on everything all the time. My only real complaint as far as teachers go, is the fact that outside an IEP meeting, anytime I ask how Jaymes is doing, I get a whole bunch of positive, happy, encouraging info on how well he's doing. Then we get to these meetings and it's a complete 180, mostly negative. That has never made sense to me, but oh well.

So anyway, all in all the meeting went very well. It helped that I had both Jaymes case manager, Julie and Doreen from the ECAC with me. I love those two ladies, they are wonderful.

It's still undecided as to what will happen next year for Jaymes. I did speak to the principal, but I think she misunderstood why I wanted him retained. I think she thought I meant I wanted him to repeat Kindergarten so he could start as a regular ed student next year, which is NOT what I was trying to explain. I meant that I wanted him to repeat so he could gain more kindergarten skills, and maybe eventually be in a resource setting rather than mostly EC. She asked me to email her what my thoughts were, so I'll be doing that when my brain has a chance to slow down and think for a few minutes.