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.

I'm here, really I am!

In spite of my plans to be better about blogging, I obviously have not been doing as well as I'd like. It's not so much that there's nothing to blog about, because of course there is always plenty. It's more of a motivation issue. I'm going through a low point in my marriage and in life in general right now, and I haven't been motivated to do much of anything except ride my horse. School has been a mess, I have a TON of neglected work on my online class to finish this week or else I'll fail... Unfortunately that hasn't much motivated me either. Obviously I need not to fail, because it would hurt my Pell grants that pay for me to go to school, and also because I didn't make the effort to go to college only to fail because I'm going through a rough patch. So I'm in the process of making some hard decisions about my marriage, and kicking myself in the butt to stop moping and just do what needs to be done.

Only another 2 weeks left of the semester, thank goodness, and I decided to take the summer off in hopes that the break will help my friend brain recharge. I also realized that I am not in a huge hurry to get a degree, and that spending the summer enjoying Jaymes' time out of school means more to me right now.

Jaymes is doing really well at school. He's spending time in the regular ed kindergarten for morning circle time, music, and centers time and has actually started to participate in group. The teacher has really made an effort to involve Jaymes, rather than just tolerating his presence in the classroom so that is a huge step.

His school skills are really coming out. He can write quite a few letters of the alphabet, and he can write his own name, spelled correctly. He does write his "y" upside down for some reason, so we're working on that. His drawings are becoming more and more recognizable, and his favorite things to draw are houses, trains, and balloons. He also enjoys drawing holiday themed things, like eggs for Easter.

He still isn't "really" singing at all, but he does chant the words to songs along with me or with his class. He surprised me in the car a couple weeks ago by chanting "baa baa black sheep." I didn't know he knew that! He is also a huge Barney fan, which is kind of cool because I really loved Barney as a kid.

As well as he is doing, my plan is to beg and plead with the school principal to retain Jaymes so he can do kindergarten again. Now that he has the skills, I know he can handle being at least half-time in a regular kindergarten class. If he is retained, he'll get that whole school year to catch up on his skills, and will have a better chance at spending less time in the AU classrooms. If they do not agree to retain him, I don't know how he could ever hope to catch up. It would be really unfair to expect that he start next year the way he did this year- part time in the AU room and part time in Kindergarten, because he is still behind enough that he does not have the skills to spend any amount of time in a first grade setting. I guess this will be the moment of truth, we'll find out if the school actually cares about giving Jaymes the same chance to be part of the non-disabled community or if all that matters is shuffling these kids through the system until they can dump them into schools like Lowrance Middle and Carter Vocational Highschool. From discussions with parents of older autistic kids, plus my own observations, it seems like the school district wants these kids on the "vocational track" rather than an academic, diploma track. That may be appropriate for some kids, but I know Jaymes, and I know that he has the ability to learn and eventually be able to join his peers. I don't want him locked in "special" rooms all his life. I know I sound like a broken record, I say it so often... But really, the only way people with disabilities can become part of normal society is to make their own way. Of course Jaymes has his own little army behind him, with general mommy at the lead... I'm not giving up on him, and I certainly hope the school isn't either.

We have an IEP meeting the day after tomorrow, mostly to discuss extended school year (summer school), change around some goals, and talk about Jaymes' placement next year. Originally, when I talked to the principal, she told me that it was an IEP team decision whether Jaymes could be retained. However, I was informed by the school case manager that the decision to retain a student is 100% in the hands of the principal. I was told she would be at this meeting, so here's to hoping she'll hear me out and try to think outside of the box. It's so easy to get used to doing everything by the book, cookie cutter style. But that doesn't work for our kids. You need to think creatively, and to be willing to try unusual things to get results. I've heard lots of good things about this principal, but I also have had my run ins and I don't think she is particularly fond of me. To her credit, if I was working for the school and had to deal with someone like myself, I wouldn't be too keen either. There's nothing more difficult to deal with than a parent advocating for their child. But on the plus side, I don't yell, insult, or curse. I'm actually really spinelessly polite- so that's helpful I guess!

In other news, I've been riding my Rocket pony every weekend either on the trails or at the hunter paces. We're a great team, he is perfect for me. He's just the right size, and he's up for whatever I want to do. If I want a calm ride, that's what he delivers. If I want to go, we GO. He's a cool little guy, and I love him. I've been starting back into jumping a little on him, and he is very patient with my inadequacies. I'm losing some weight, because I've been out riding hard and that's always a good thing.

Sierra is doing very well, and talks and talks and talks. She's so smart. She loves to ride Rocket, and is also helping with our garden this year. The marigolds are her responsibility and she really enjoys watering them every day.

As for me, I'm still here. Just very depressed with life right now and in the process of picking myself up and getting the things that need done, done. Lots of hard decisions to make, and plans and all that unpleasant stuff. But I hope that in the end, we'll all be better off.

Anyway, that was one hell of a rambly blog post... Anyway, I'm adding blogging to my chore list in an effort to get myself to sit down and do it. It's not that I haven't wanted to, it's more of an issue making the time and actually getting myself to start writing. If I start, I can't stop. As evidence by this looooooooong post.

Anyway, happy spring everyone, and yes, I'll be blogging more frequently.

What does Easter mean to you?

I know that for many, many people, Easter is a very special religious holiday. Goodness knows I've seen about ten people on my Facebook friend list who have status updates that all say something to the effect of "Easter is about our lord and savior...etc... and not about eggs, bunnies, and candy." I can respect that, and for those people, I'll avoid making comments about how much the kids enjoyed their egg hunt today, or how Jaymes has probably eaten his own weight in chocolate today.

However, I'd like to share with all of you what Easter means to me. At our house, Easter is about a fun, relaxed day. We just hang out in the backyard and enjoy the warm weather and enjoy each other's company. We cram ourselves full of ham, potatoes, and candy. It's just a day to make the kids happy, and to bask in their happiness. Nothing makes me happier than seeing my kids light up while they're looking for eggs or dying their hands purple.

So, how did we spend our Easter this year? It was a really neat one. As always, nothing went exactly as planned... Which is ok at my house. The cool thing about Easter this year is that this is the first time Jaymes has expressed interest. He has actually spent the last week drawing eggs, talking about easter eggs and baskets, and just being excited in general.

Anyway, we woke up early to the sound of Jaymes screaming at the wall. Ignored the screaming at the wall, in an effort to go back to sleep, but eventually realized that I needed to get out of bed and at least attempt to get things ready before the kids both emerged from their beds. I wanted to set up their baskets, and put out the candy filled eggs all over the front and back yard for the egg hunt.

Stumbled out of bed, attempted to get a bra on so as not to blind my neighbors as I bent over dropping eggs into the grass, and wandered outside. I don't actually remember much of that, so I may have still been asleep. But I did have a bra on. Really. I try to be a good neighbor.

Got everything set up, and tried to get trick my children into eating breakfast... Which worked with Jaymes. Sierra woke up knowing it was Easter, and she had only one thing on her mind: Candy. This is one of the very few days in the year that I'll let her eat candy for breakfast, so she took full advantage. Unfortunately, I stupidly left the chocolate bunnies outside on the picnic table in direct sunlight. By the time I figured this out, Sierra's bunny had melted into a sad little pile. I felt very bad.

The kids LOVED their baskets, and they loved the egg hunt even more. Jaymes actually understood what he needed to do, and he was 100% into it. Sierra was a little faster, so I had to redirect her to areas without eggs to give Jaymes a chance. This worked very well. I got some very nice pictures, and if my camera will stop being difficult I'll be posting them up here soon.

The rest of the day was spent sitting out back, enjoying the beautiful weather. The kids swam in their new pool, colored with sidewalk chalk, and jumped on the trampoline. Jaymes really impressed me with his drawing and writing. He has come such a long way. Not only can he write his name (spelled correctly, and reasonably legible) but he can also draw beautiful squares, circles, triangles, trains, and people. He's very fond of making long lines of squares, and when asked what he drew, will walk down the line saying "a square and a square and a square and a square..." He also started writing some numbers, including a PERFECT number four. Oh course, he did this on the brand new picnic table... But since it was with chalk, it wiped off easily.

Jaymes did not end his awesomeness there... Nope. On the way to Walmart, to get bread, I heard Jaymes saying something, so I shut off the radio and asked him what he said. He started SINGING the Baa Baa Black Sheep song. Now, I have NEVER heard Jaymes sing. He never sings. Sometimes he chants rhymes, but he doesn't sing. This time he SANG. I didn't even know he knew that song, but he did the words perfectly, and the tune was pretty close.

So I guess the point of this post is to say that I think it's great if those of you who consider Easter a religious holiday spend the day reflecting on the miracle of Jesus being resurrected... I know that's a big thing for you folks. But I spent my day reflecting on how incredibly blessed we are. Jaymes may have autism, and he may not be like all the other 6 year old kids in the neighborhood, but he is so smart and he has come such a long way. The child that people said would never talk or be able to function in normal activities managed to have a great day. He egg hunted, he colored eggs, he wrote his name, and he sang.

Wear blue tomorrow!

Short post, I really will get back to proper blogging this summer, school is kicking my butt still. I'm taking the summer off, so only have to suffer until May 5th? 7th? Something like that.

Anyway, remember to wear blue tomorrow, for World Autism Awareness Day! People all over the globe will be wearing blue to show support for our loved ones with autism, and for everyone affected by autism. Even our pony will be wearing a blue summer sheet tomorrow, Rocket supports Jaymes!