Still Here

Things are really crappy right now. 25 days until Riley is out of that damn school. I burned my bridge with the counselor there, after his report card and some very scary words from Riley. She's useless anyway. She has done nothing but fight me on an IEP, and she hasn't helped him at all. I thanked her for that. :-) AND I work for the district!! I can't imagine what would happen if I wasn't a teacher!

There are just lots of things going on right now. Some I don't care to share. It's heartbreaking and rather stressful.

Results are almost ready (from the third professional we have seen), and now we have sought a psychiatrist. Anxiety is at an all-time high (school, grades, expectations) and Riley doesn't want to go anywhere. He just wants to be home all the time. He has the appt with the psychiatrist on May 25. We think he needs some meds to help with the anxiety. The not wanting to leave the house is getting old fast. Really very frustrating. I mean he doesn't want to go anywhere (except Disneyland).

I am contacting the high school for a meeting. It's IEP time and I am done fucking around with this district. Oh, will be contacting the head of Special Ed as well. It's time she knows what is going on. Keep that to yourself as I plan on "surprising" them. I have played their game, tried to do it their way, but it's not helped my kid. That is unacceptable. He has a right to an education, free from constant harassment from peers, in the "least restrictive environment." Done. Playing. Games. We've dicked around for 2 years now.


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This picture is from Riley's piano recital in January. He played two songs, Heigh Ho and It's a Small World. He did a great job!

There have been a few things going on around here...

Riley started a social group after the first of the year. It meets every sunday for a little over an hour. The woman who runs it, works for my school district. She does this as a side job. She is excellent. They are working on the exact things that concern me: being able to see things from another person's perspective, being less rigid, etc. He likes going, and I REALLY like the connection I have made with the other moms. They have the same frustrations. It's kind of comforting to know that I am not alone.

Riley has been melting down a lot more lately. About stupid things too: like not being able to find his scout scarf (when he was told to locate it two hours before, but didn't) at the last minute. It caused lots of crying and tears. I think his hormones are raging, but I swear I am waiting for his head to spin around. He never threw fits like that when he was little, so it's kind of new for us. He also had a major meltdown over attending a Superbowl party. He just didn't understand why he should go because he doesn't like football. In the end, he went, but he took a book. I let him since the hosting family has an Autistic child as well, and I knew they would totally understand. Our goal is to try and get Riley out to be social at least once over the weekends. He is happy to just stay home, not talking to anyone.

Our lovely neighbor is up to his old tricks. He and another boy threw a rock at Riley when he was walking home from school. He was behind them on the way home, but they stopped and made him go around them, so that they were behind. The neighbor threw the rock. The thing is though that Riley didn't know he threw a rock until the next day when the other boy told him. He sits next to Riley in Math and he said that our neighbor threw the rock to scare Riley. He admitted it. I sent an email to the VP-that whole strand was a joke. Basically they got a warning and that's it. They denied that they threw the rock. Kevin called and talked to the VP, who told him that parents were called, and next time there would be a consequence. I let the VP know how dissatisfied I was with the handling of the situation. It was intimidation and bullying, both are suspendable offenses according to Ed Code. Apparently not the first time though, and now there's a paper trail so if they bother him again, they will be suspended. I suppose they will have to kill Riley in order for something to be done. Next time though, we call the police. That jackass is old enough now to STOP his asshole behavior or risk the legal consequences. I really have no idea why he keeps bothering Riley. I really don't. Riley says nothing to him, doesn't even look at him, just ignores him completely and yet this kid keeps going after him. His parents are horrible. His sister is equally as horrible. Do you know how hard it is to watch your child constantly hurt? It sucks, and I wouldn't wish it on anyone-well, except the neighbor kid. THAT would be great! I would pay money to watch that! I saw him walking down the street the day after all of this came out. He looked right at me (I was driving), with this deer in the headlights look and I looked right back at him and mouthed the word "ASS" at him. I hate that kid. Next time I see him I am going to give him the watching eyes.

Today we met with a new psychologist. We are having Riley reassessed and this time they are completing the IQ portion of the test. I think that's important to know in terms of school and services. Riley goes for the first round of testing March 6, then two more sessions after that.

High School registration will be coming soon. We have already gotten calls from the HS about programs (the athletic department-LMAO, oh yeah, I am sure they want Riley). He was nominated to do some AVID program, but we are declining. It's a four year program to prepare kids for college. That would be his only elective. I feel confident that Kevin and I can get Riley ready for college. He needs to have his electives. He wants to do band, and we want him to have that experience and meet new friends (we like the old ones too, but he needs more friends). He actually went with the 8th grade band classes, to the HS to listen to their band teacher speak about band in HS. He can actually take 7 periods and can take concert band AND marching band, AND marching band counts for PE!!!!!! I will make an appointment with the HS, at the end of this school year. We need a smooth transition to HS.

And Here We Go Again??

So we spent 10 days in Florida, after Christmas. We went to Disney World. Riley is always up for a Disney trip. He's kind of a pain in the ass the first couple of days though. Particular about where we should eat, hard on his brother (who lacks the Disney knowledge that Riley has), basically he wants to do what he wants to do. The food thing is a real pain. He gets a "feeling" for a certain food, and if that's not an option on a menu, there are issues. Super annoying. I mean REALLY super annoying. We let him make the choices the first two days and after that, he was SOL (shit out of luck) if he didn't like what WE chose.

The meanness towards his brother drives me nuts. He can be nasty mean to Quinn. It's something we are hoping his therapist will work on, IF he can stop talking about Disney TO her. He doesn't talk WITH people, he talks TO them. He just started a social group on Sunday (which Kevin and I get to pay out of pocket for, since the school will not provide the service). We are hoping the group, and the awesome leader (she works for our district and boy does she know what she's doing!), will help with the meanness towards Quinn, in addition to the reciprocal communication. Oh, and the calling us and others by their NAMES. I have heard "mom" a little more often now, so hopefully there's progress.

Riley seems a lot more withdrawn lately. He just wants to disappear into his own world. He's not answering questions, the first time. He was doing that before, and I was always all over his case about it. He'd do it to other people though: grandparents, teachers, peers, us. It drove me nuts that someone would ask him something, and he just wouldn't respond. He got better about it, but lately, he's starting to do that again. I am insisting on responses. I won't let him disappear into his own little world. He has to be engaged.

School wears him out. I honestly will be surprised if he lasts through high school. He would never drop out, but eventually we may have to pull him out. Especially if we get nowhere with the school, like the junior high. The high school has A LOT of kids, and I've heard the halls are very crowded. He's not going to like that-the crowds or the noise. That may be one area where accommodations are made. There are 1,002 kids at his junior high, but the high school is even bigger. I have concerns. Nobody seems concerned about my concerns except me though. I have sought out advice from an advocate. We'll see what she says, and see if we'll need her services. Riley needs an IEP because he needs some services (social group, maybe even adapted PE). The school won't give him one, but they aren't following the 504 plan either. I'm finished playing with them.

We are also seeking another evaluation from a professional psychologist, since insurance will not pay for the Autism Center at Lucile Packard (Stanford). One of the doctors is from a place called Keystone Behavioral Pediatrics. My friend says they look good, so I will be calling over there tomorrow. I still have questions, and since Riley does not qualify for services from Regional Center, there's nobody to answer my questions!

To say that I am frustrated is an understatement. It's just never ending. If the school would step up and DO their job, it would be a lot better. I emailed the psychologist at the junior high last week, asking about the social group. Basically she dropped the ball. She told us at his 504 meeting, in October, that SHE was going to run a social group. She said she just needed to get permission from the parents of other kids who needed the service. Nothing has happened. I emailed her about it last week (I gave her quite a lot of time to get her shit together), and she said she is no longer able to do the group but that she was working with the head of special ed, to get one going. Yeah right. Perhaps an email to the head of special ed, from me, could speed things up? I'll try that tomorrow too. I am trying to work (district makes that hard for me to do as well), and I do have another child (what's his name again?), but I guess I will just have to plug on. I can't wait until Riley is out of that junior high, and I don't look forward to Quinn (oh yeah, that's his name) going at all. I am disillusioned with my district.

Hmmm

Riley had his first performance with the band, last week. His music teacher is amazing. All of the bands are just spectacular! Riley can actually play the clarinet! He was pretty pleased with himself.

So after break we are going to possibly look into an advocate. Riley's 504 plan is not being followed. There are at least 4 accommodations which are not being implemented. One of which, and my biggest concern, is a social group. The psyche was going to look into starting one, but needed to get permission from some other parents. We've heard nothing about it since. We met for the 504 in October. I am tired of playing with these people. My kid needs some accommodations as this disorder is starting to affect his academics. The junior high seems unable to do this, so now we must go forward. I have plans, oh I have plans, and I don't think I will be very popular, but who cares? I have pretty thick skin, and this is my kid and this crappy school district is wrecking him.

Riley is starting a social group in January. There's a woman who works for our district, who runs social groups on the side. We will have to pay out of pocket for this, but he needs these skills. Oh, and I did get a phone call from my private Cigna Kelly (when you bitch about Cigna on Twitter, you get results), saying that our insurance will cover a social group (it's in Mountain View though), so I believe we will explore that option as well, and try both groups for awhile. The local one will be good, because perhaps we can connect with some local families who know what we deal with daily, and can relate.

Just Checking In

Things are going well in Riley's world. He's working on finishing his walking stick, in Scouts. This weekend they have an all day workshop to finish it up. He's done a nice job sanding it.

We had a little crisis at dinner last night. Riley didn't chew his bite of taco very well, and got some shell stuck in his throat. He was freaking out, saying, "I don't want to have to go to the emergency room!" Clearly he was talking, and NOT choking, so that wasn't going to happen. He wouldn't drink any water at first, to try and wash it down, just was hysterical. It finally went down, and he continued to have another taco, telling us he would take smaller bites. Good thinking. It's things like this that just bug me. His reactions are so over the top, and not how a "normal" 13 year old would react. It's very frustrating to try and talk sense into him as he is very hard to persuade. We went to dinner tonight, at a restaurant, and while I was up getting my burger fixings, he had taken his food to his seat. He comes up and says, "Well I can't eat my dinner because I don't have a fork!" I had him turn around and see the "Silverware" sign above. Of course they were out, so I made him track down an employee and ask them to refill it. He just doesn't have the knowledge to figure this stuff out on his own! Again, frustrating, but we plug on. I now see very clearly what we have to work on with him, so that he can function as an adult.

Social skills group and Alpha-smart have yet to come to fruition at school. I am cutting them some slack because of the break last week, but I am only going to wait so long, and then I have to call to get things rolling.

Riley goes back to see the endocrinologist this month-the day before our Disney World trip. I think the medicine he is taking, is causing him to gain weight. I want to see what the doctor says, and then in January, we are ALL starting a new, healthy eating regime. Is it wrong to put a 13 year old on a diet? I just think he would be a lot more active if he were in better shape. He WILL NOT stop eating though!

504 Meeting

So we had Riley's 504 meeting today. 3 of 6 teachers were present, plus the psychologist and the VP. A little funny about while we were waiting. The secretary was calling the VP on the walkie, to let him know we were there, and because they had a new student and wanted to know when she could start. They couldn't get him and couldn't get him, and then someone said he was at McDonald's across the street. With that, the secretary looks at us (because we can hear what's going on) and say's, "He's not eating, he's there for supervision." We knew that. There's a McDonald's right across the street from the junior high, and it's packed with kids after school. He was over there, probably chasing kids away, making sure all was ok. It was funny though.

Anyway, Riley still has the 504. The psychologist doesn't think he needs an IEP, especially because they can give him some of the things we want, with a 504. We got everything we asked for: an Alphasmart for Riley to use to take notes (writing is just tedious for him, and his printing is super messy), prompting from teachers for homework/assignments (he doesn't just do what the other kids do-he does his thing), extra time if he should forget to turn in work, prompting to use eye contact, and most importantly, he gets to join a social group. Now that will only be a go if the psychologist can get permission from the parents of some other kids who need that service. If they say no, then we will continue to push for a social group for him. I know there's someone available to run a social group, and has offered to even just take him and coach him.

We were happy when we left the meeting, although I do not know why the Math teacher did not attend the meeting, as she was in the office when we were waiting. Riley's English teacher thought it was tomorrow (we saw him after the meeting), and was very apologetic that he missed it. We were not concerned with him as he had Riley last year and is aware of the situation. He's such a nice man. The music teacher plays with the Oakland Symphony, and was out today. That's another one that is fine. Riley is doing well in that class. There are no issues. We could have used the Math teacher being present though, but we'll go tomorrow night, to conferences, and talk to her. We'll also meet separately with the PE teacher tomorrow night. She really wants to help him, and will make accommodations-she already has by having him run one lap instead of two for his mile run. She doubles the time for the one lap. She's going to help us brainstorm ways Riley can earn at least a B. She did inform us that he's been telling her he can't breathe even before he runs. We nipped that in the bud tonight. He breathes just fine. It's the running that brings on the asthma. I think he has anxiety about running and is using that to get out of it.

They are really being very accommodating at the school. We even talked a little about high school, and I know who to contact there, at the end of this year, to ensure that Riley has a smooth transition into high school.

Oh, and we picked Riley's report card up yesterday: 4 As, a C in PE and a D+ in Math-he has not been completing assignments in there. We will meet with her tomorrow to discuss that.

Double OH, I have this awesome paper about PDD NOS, so I copied the important pages about the disorder, and another one I have about Aspergers, and gave a copy to each teacher. The PDD NOS one was very good! LOTS of good information.

Preparation Time

This picture has nothing to do with today's post. I just can't post a post without a picture.

We are gearing up for Riley's 504 meeting on Wednesday. My friend, who is a therapist/behavioralist and two of her colleagues came over on Friday, to spend some time observing and working with Riley. The three of them are forming their own business, helping parents of kids on the spectrum. All three of them were shocked that Riley does not have an IEP, and they laughed at his 504 (it IS pathetic). I let them look over the testing results from Regional Center, and there was agreement that the diagnosis could still be Aspergers, but really it doesn't matter, because PDD-NOS is an Autism Spectrum Disorder. I think it only matters to me, because the school does not know what to do with the PDD-NOS diagnosis, and Aspergers is easier to understand. Anyway, they really helped me figure out my focus for Wednesday's meeting. I just sure wish I knew if he was going to get an IEP or not-the psychologist never got back to me about the testing results. It should be interesting to see if she shared the results with the VP or counselor. So I have a clear idea of what I want. All of my goals for Riley are social goals. He has to be able to introduce himself to others, and learn to carry on a conversation, a two sided conversation, not just answering questions. He's not good at chit-chat. He can and will answer questions, but he won't reciprocate conversation. If I ask him how his day is at school, he would never then ask about my day, etc. Another goal is to get him to use names. He does not address anyone by name, except for Quinn, and he says that name more than he really should. He does not call Kevin and I "mom" or "dad," and he is certainly NOT using the names of his teachers. He's going to HAVE to use names when he has a job some day. He won't use his teacher's name if he has a question, he'll just start talking. The ladies that were here Friday prompted him to come into the living room and say, "Mom, I decided I want burritos for lunch" (they made him choose what he wanted for lunch, threatening sushi if he didn't choose). He came into the room, walked over to me and said, "I decided I want burritos for lunch." He was then redirected and he said he couldn't do it, that he wasn't good at that. She then prompted him to say her name and that he was not comfortable saying that, which he DID do. There's been a handful of times that Riley has said, "mom," and each time I haven't answered at first because I am not used to him saying it.

I will keep you posted about Wednesday's big event-oh I am also asking for an OT evaluation and a social skills group, and for him to be able to use an Alpha Smart for note taking. Ducks in a row, ready to throw down if it comes to it. I am over my district and their lack of helping kids-and not just my kid either. ALL kids.